Nitwits & Why Physicians Lose Credibility

[IdaBriggs]

We have a lot of folks on DU who are "experts" on a lot of stuff, but one of the favorite topics is "woo." "Woo" is generally anything that has not gone through rigorous scientific testing and stringent peer reviewed studies.

Today the good folks at the "Annals of Internal Medicine" jumped in to the fray, and have published an editorial that has me personally pissed off six ways to Sunday because they just don't know what they are talking about when it comes to nutrition.

Yeah, I said it, and I stand by it.

Enough Is Enough: Stop Wasting Money on Vitamin and Mineral Supplements

...Despite sobering evidence of no benefit or possible harm...

(snip)

The large body of accumulated evidence has important and public health and clinical implications. Evidence is sufficient to advise against routine supplementation, and we should translate null and negative findings into action. The message is simple: Most supplements do not prevent chronic disease or death, their use is not justified, and they should be avoided…The evidence also has implications for research. Anti-oxidants, folic acid, and B vitamins are harmful or ineffective for chronic disease prevention, and further large prevention trials are no longer justified…With respect to multivitamins, the studies published in this issue and previous trials indicate no substantial health benefit.

http://annals.org/article.aspx?articleid=1789253

Well, there you have it - pregnant women everywhere, stop taking your prenatal vitamins and folic acid because all of the research that showed good things was just a joke. Oh, and the Vitamin K shot stuff that has been doing what for babies? Ha! A "well nourished" baby needs no such thing! And all of you crazy veterinarians who have been dealing with "what does it take to grow healthy livestock" - you must be imagining THIRTY PLUS YEARS OF RESULTS because the hallowed authorities have spoken and the fact they don't know what they are talking about is completely beside the point!!!



Did I mention I am PISSED?

Many of you know my story. For those who don't, let me share. My husband and I went through eight years of infertility treatments that included three miscarriages. If the doctors said jump, we asked how high. If they said needles would help (drugs or acupuncture), into my body they went. You name it - pineapple juice, standing on my head, quacking like a duck - I was there. I also saw a guy with a PhD in CLINICAL NUTRITION, and followed his instructions for my prenatal supplements: a good quality easily digestible multivitamin, folic acid, zinc, and liquid trace minerals. And blessed be - I got pregnant with twins.

I am an anal retentive geek; I get "garbage in/garbage out" and I read the "what to eat for a healthy baby" books, especially the one about "how to eat if you are pregnant with multiples." And I tried - except I had hyperemisis the whole pregnancy, which meant "non-stop, put you in the hospital vomiting" and instead of gaining weight, I lost it, which was Very Bad. Then I ended up with pre-eclampsia, we all almost died, and my babies came two months early.

My daughter was born at 3 lbs 15.6 ounces, and my son was born at 4 lbs 3.5 ounces. Those are good weights for that gestational age, especially for twins, and a little surprising for the medical problems I was facing. We did the NICU trauma - 13 days for my son, and 19 for my daughter, who came home on oxygen and a heart monitor - and since I couldn't get them to latch, I pumped every three hours for two months.

And then I couldn't physically do it anymore, and had to switch to formula.

"Studies show breast milk is best for babies" and I knew that. My twins were at increased risk of neuromuscular issues due to their prematurity, and anything I could do to decrease those odds (since we had been living on the bad side of the odds for a very long time at this point) was important to me. But I honest to God could not physically do it because of absolute and utter exhaustion at a level I can barely describe. And I had a small breakdown in the middle of my kitchen, crying and praying because these children were the most important thing in my life, and I was failing them - first I couldn't eat right while I was pregnant, then I couldn't keep them safe inside of me, and now I couldn't "not sleep" so I could feed them. And for reasons unknown, as I was mixing their bottles with the polyvisol and liquid iron (baby vitamins and the iron was for anemia issues), I saw the liquid trace minerals I had been continuing to take while nursing, remembered a lecture about chickens getting 25% bigger than other chickens, and went, "well, it couldn't hurt" AND THEN I ADDED 3ml once a day to their bottles.

Two months later I had "normal" 14 pound four month old babies. By six months old, they were top of the growth charts for full term babies, and then they started meeting or beating their milestones as if they were full term babies.

Those of you who know anything about preemies are probably either surprised or skeptical. I have pictures and doctor reports. Honestly, it was somewhere between eight months and a year before I started getting how unusual this was - I had been told "preemies usually catch up" but didn't know it wasn't supposed to happen until they were one to two years old. And I suspected the trace minerals had helped and shared that information with my doctors; no one was interested.

The twins turned two, and I decided to push for an investigation. I contacted over FIFTY different organizations, physicians, research facilities, the NIH, formula manufacturers - anyone I could think of, I called. I put together a PowerPoint presentation, and over and over again I asked, "please investigate this - I think it is important!" People were happy we had such good results, especially because so many preemies don't, and everyone agreed "someone should investigate that."

We were formally diagnosed as "lucky."

In 2009 I complained about it here on DU, and the explanation was found in the "Textbook of Pediatric Gastroenterology and Nutrition" on page 631 - “[preemies] are at increased risk for developing trace mineral deficiencies... because accretion of trace minerals takes place during the last trimester of pregnancy." In addition to explaining what happened with my children, it also explained why preemies get "caught up" between one and two years of age, because that is when they start eating "real food" which has the missing micronutrients in it.

I went back to every single scientist, physician, organization, etc. showed them the textbook, AND NOTHING HAPPENED. Apparently I had given birth to miraculous mutants.

It got worse. We started the "Preemie Growth Project", provided the trace minerals to 17 more preemie babies (crappy documentation because honestly expected other people to take over), and they ALSO "caught up" in 2-4 months.

Yawn.

Ah, then Jordan's baby happened - 9 months old, weighing 12 pounds, diagnosed as a "floppy baby", she was told he would receive his formal cerebral palsy diagnosis when he was two, but she needed to begin preparing herself for him to spend the rest of his life in a wheelchair. She gave him 15 mls a day, and two months later he weighed 22 pounds, took his first steps, and currently has no cerebral palsy symptoms - woo hoo! THAT is a big deal, right?

My fifty folks didn't even blink. "Misdiagnosed."

The twins were 5 when "the Neighbor Girl" incident occurred. She was 9 years old, born a micro preemie, confined to a wheelchair, unable to use her hands to take care of herself, "failure to thrive" at 44 pounds, and unable to remember the alphabet. Her brother was five - my twins were five, and the family didn't do wine, so I gave them a bottle of the trace minerals.

June 8, 2012 - six weeks later - she was standing up, bending her fingers, could remember the alphabet, and weighed 50 pounds. I freaked out.

This time I documented. We put it on the web. We gave it away for free, and ended up with 271 children in 38 states and six countries. We ended up with "good data" on 162. 121 saw "dramatic measurable improvement" in at least three of the eight categories we tracked. They started eating. They became demonstrably stronger. Three reported CVI children responding to visual stimulation. Small skulls began to get bigger. Babies responded in as little as 72 hours. 74% of the chronic "failure to thrive" kids were no longer in that category within 90 days. Teeth grinding stopped. Chronic constipation went away. Sensory issues were "gone" by week 16. "Impossible" things kept happening - clonus went away for one child! - and every excited parent assured me their doctor was going to be very excited because this was a MIRACLE!

Not one phone call. Not ONE.

These are busy people. Nutritional supplements are a waste of time and money. Just because the vets use them doesn't mean humans need them, right?

ARGH!!!

I don't sell this stuff. There are multiple brands on the market, and while I have my favorite, they all seem to work.

Apparently, you NEED the trace minerals TO GROW BRAINS. Also muscles, and a few other things, too. Children with deficiencies have neuromuscular issues. Correct the deficiencies, and the kids get better.

Oh, and it has to be done ORALLY (which is why TPN in the NICU isn't doing it), and liquid on an empty stomach seems to get the best results.

For babies, you just add it to their bottles. For children, mix it with juice. It tastes nasty. We've documented the pattern of improvement pretty clearly, and people know within two months if they are going to get a magical "lucky" diagnosis.

There is more - so much more! - and I have a list of unanswered questions, including why it only seems to help four out of five kids.

Apparently, I am "peddling woo." According to the experts, all of this is imaginary, and could be attributed to the placebo effect. Babies *always* respond to the placebo effect - and children, too!



At the end if the day, I have to make my best decisions for the benefit of myself and my family. I need to decide if the good folks at the "Annals of Internal Medicine" know what they are talking about. I have to decide if they understand the importance of a DIGESTIBLE multi-vitamin, or the differences in efficacy that can be found with a liquid form when there are issues with lower intestinal absorption. I have to figure out if they get that deficiencies can cascade, because zinc deficiencies can impact the appetite, which means you don't eat, which means you don't get what you need, which makes things even worse. Do they understand the role of biotin in Vitamin
B absorption? How about the estrogen/copper connection for young boys? Or the disastrous role of miralax and how it affects people with chronic neuromuscular issues?

I am guessing not. I find them to be "not credible."

And maybe I did indeed "get lucky" when the "scientific community" opted to ignore my story.

It isn't like they really seem to know their heads from a hole in the ground anyway.

Yep. I believe in "woo".

[Spider Jerusalem]

1. Please note that prenatal folic acid and vitamin K injections aren't the same thing as supplements.

The article is specifically addressing multivitamin/mineral supplements taken daily. The article cites large-scale studies that show no benefit on mortality or outcomes for people taking vitamin supplements. This is not the same thing as specific acute conditions that can be treated with specific vitamins and minerals; the article is not talking about those, though. Your outrage is sadly misplaced.

[SidDithers]

3. +1...nt

Sid

[longship]

7. ^^THIS^^

R&K for this response alone. (And others saying basically the same thing.)

[IdaBriggs]

20. Folic acid and Vitamin K *ARE* both supplements.

Folic acid is "Vitamin B9". What part of "Vitamin B9" and "Vitamin K" being vitamin supplements is not clear to you? They are part of the "multi-million dollar supplement industry", and oddly enough women who take them even after they are no longer pregnant keep reporting (gasp!) benefits!

Imaginary ones, I'm sure.

[Spider Jerusalem]

22. I'm sorry that you don't understand what you're talking about.

The article specifically addresses the use of dietary supplements by people who are neither pregnant nor infants. There is sound medical evidence showing that folic acid supplements in pregnancy and neonatal administration of vitamin K are both very helpful in reducing specific birth defects (in the case of folic acid) and in preventing haemorrhage due to vitamin K deficiency in newborns. In neither case are these "supplements" in the sense of the word the article uses. They are specific prophylactics.

[IdaBriggs]

25. Unfortunately, I do know what I'm talking about.

Apparently, so do the retailers, because they put all the nutritional supplements - including folic acid and pre-natal vitamins - in the same aisle as the ones these folks are dissing, and the article specifically mentions folic acid (vitamin b9) as useless.

But if it helps you to pretend only pregnant women and babies suffer from deficiency issues, go for it. But you might want to expand on the thought - what does vitamin b9 do that reduces birth defects? If it helps build and maintain new cells in infants and pregnant women, how can it benefit other people? And since there are blood tests that can determine if someone has these deficiencies, maybe that test should have been run to determine study participants first, to determine if a water soluble vitamin deficiency was present in the group being studied to determine if correcting a deficiency that may or may not have been present had any efficacy?

Please - ignore my silly common sense. I'm not a doctor - just better informed than they are. Then again, I actually read their dratted textbooks and journals trying to figure this stuff out, so yeah, me!

[SidDithers]

27. "I'm not a doctor - just better informed than they are. "...

Sid

[Dr. Strange]

37. Dr. Dre, specifically.

[SidDithers]

71. Heeh...

Sid

[IdaBriggs]

41. Yep. I said it. And I stand by it.

Especially when it comes to my little field of expertise. Apparently I know "a secret" that has escaped the experts for 50 years - that certain types of cerebral palsy and neuromuscular issues are caused by correctable micronutrient deficiencies in pre-pubescent children. Apparently micronutrients are important for growing BRAINS and MUSCLES!!!

(swoon)

Want to see my data, Sid? Come on - you know you want to. Detailed medical histories and statuses of 162 neurmuscular patients, all willing to talk to anyone willing to listen. 121 easily repeatable little miracle stories. We even have video! Want to see "the Neighbor Girl"? Her hyperspastic hands become completely normal in about sixteen weeks with no other intervention. Want to see the quadriplegic peddling a bicycle? How about the kid who couldn't walk up a flight of stairs after two years of physical therapy climbing on the monkey bars after six weeks? Ooh, how about the little girl who couldn't do math, who suddenly had increased cognitive function by week six and "magically" did it right before the IEP that was going to deal with the fact she couldn't? Or the non-verbal children who start talking? Those are fun! Want the name of the doctor who flipped out because clonus disappeared and he couldn't figure out why? He keeps having to change his plan of treatment for that child, because she keeps getting better instead of worse!

I've got a ton of them. And you can even talk to the ones who saw ZERO improvement.

They'll make you feel better, those 17%. Personally, they make me feel like crap.

[CreekDog]

45. i hate when she makes me agree with Sid

[NealK]

116. I'm kind of shocked too.

[Lydia Leftcoast]

77. My brother IS a doctor with an MD from a well-known medical school, and

he has told me that
1) MDs get 1/2 day of training in nutrition, and it's mostly about what deficiency diseases they present
2) Many if not most doctors are very closed-minded about anything that they didn't learn in medical school and get most of their "updated" knowledge from drug companies

He says he has learned a lot from nutritionists, physical therapists, and even chiropractors and has the cured patients to prove it, people who were referred for back surgery and came to him for a second opinion. He tests their posture, muscle balance, and blood nutrient levels and asks them about their jobs and daily routines. Sometimes they don't need surgery at all, just physical therapy or nutritional supplementation, or a variation in their job routine or shoe inserts or something equally non-invasive.

He criticizes his fellow physicians for thinking only of medication or surgery when a patient shows up with an ailment, and if medication or surgery doesn't work, then they tend to assume that "it's all in the patient's head." He also got out of medical practice groups that required him to schedule patients every 15 minutes so as to maximize profits. He actually got kicked out of one group for not referring enough patients for surgery.

Three years ago, I fell on the ice and broke my elbow. When it happened, I was on my way to volunteer at a meal program for street youth, where a medical team of a medical school professor and some students were also volunteering to consult with the street youth on health issues. They weren't busy, so I went to ask them about my injury. The professor used me as an object lesson of how to diagnose possible fractures, and he diagnosed me (correctly as it turned out). I asked what I should do, and he said to go in to Urgent Care and get fitted for a removable cast, since I would mostly need to keep the elbow immobilized but should move it a bit each day to prevent it from freezing up.

The next day, I went to Urgent Care, where the doctor on duty took X-rays, confirmed the diagnosis, and gave me a removable cast. However, he also sent the X-rays to India to be read again and made an appointment for me with the orthopedists in his group.

The orthopedist did nothing but confirm that the X-rays showed exactly what the previous two doctors had said. He didn't even examine my arm, but decided that I needed a lighter-weight cast.

The bill for Urgent Care was $250. The bill for the orthopedist was $800. (This began to give me some insight as to why America spends so much money on medical care.)

[Spider Jerusalem]

35. No, you clearly don't.

The article says that folic acid and other antioxidants have no effect in reducing mortality and morbidity in major chronic diseases. This has nothing to do with the well-supported use of folic acid as a prophylactic against foetal neural tube defects.

[IdaBriggs]

47. Sigh. We're going in circles. Yes, folic acid (vitamin b9) is important.

So are the rest of the major and micro nutrients. And DUH! that these help reduce infant mortality and morbidity - that is kind of my point in the sarcasm.

Despite this, it still took YEARS before their use became common place / recommended for the population. There were articles written directly contradicting the early findings (google is your friend).

And if I am right (which obviously I believe I am), in a few years the findings I am putting out will HOPEFULLY become common practice too, which could lower the infant morality/morbidity rates by 60% within two years of implementation for at-risk populations.

Or not. Right now "trace mineral deficiency" takes you to quackwatch, which says "well, there aren't any studies proving efficacy" BECAUSE THERE AREN'T ANY STUDIES.

[Spider Jerusalem]

54. Did you actually bother to read the article you're criticising?

"no effect on mortality and morbidity in major chronic diseases".

[eqfan592]

101. Maybe that's the source of the problem here.

Perhaps the OP thinks of pregnancy as a major chronic disease? I can't otherwise fathom how else they could be so wrong on this.

[tavalon]

142. That's right

There is no money in supplements. Follow the money.

[CreekDog]

44. Spider is referencing double-blind studies of efficacy, while you are...

saying sciency words that are designed to make us think they are the equivalent.

no.

[IdaBriggs]

51. Dude, there *ARE* no double-blind studies about what I am talking about.

Why the heck do you think I am so flipping flaming mad? We had to jump through all of these hoops to prove I didn't give birth to "magical mutants" so we can GET to the double-blind studies because apparently we *imagined* what happened.

My twins are six. Want to count the number of people who could have been helped if the Powers That Be had gotten off their royal hind ends and taken this over five years ago?

Sigh.

[CreekDog]

88. Maybe there aren't any because there is no causal link between the treatment and the disease?

[IdaBriggs]

95. Sigh. If that is true, then it should be easy to prove, right?

Except if they actually investigate, they will find the EXACT OPPOSITE.

And when they are *shown* the exact opposite of your statement, they ignore it.

Hence me saying they are ignoring evidence that does not agree with their conclusions.

Want to know why cerebral palsy doesn't get formally diagnosed until age two? Because sometimes it miraculously CLEARS UP before then, and they don't know why.

I am *suggesting* that maybe the food the baby eats may have something to do with that. You know, like what you eat impacts your blood sugar level if you have diabetes?

Do you know the last "big breakthrough" with cerebral palsy prevention had to do with magnesium supplementation prior to birth?

It is one of those "minerals" I am talking about.

Like I said, "crazy woo talk."

[CreekDog]

97. if you don't have a causal link, how are you going to prove one?

jeez.

[IdaBriggs]

98. We can turn the sensory processing issues on and off like a water faucet.

We can prove that 4 out of 5 kids following the protocol see the same types of significant changes.

When my little "miracle" happened, I did something completely unheard of: I identified what I did differently, then we repeated it with other children and got the same results.

Preemies don't catch up until they are between one and two years of age unless they have their trace mineral deficiencies (as identified in the textbook) *corrected* at which point the little runts "catch up" to their full term peers in two to four months.

What else do you think it is? Fairy dust and wishful thinking?

[CreekDog]

99. well at least you weren't testing on animals

[tavalon]

145. If the medical establishment were doing their job correctly,

those studies would have been done and we wouldn't have had to use our kids and pray, pray, pray, we weren't hurting them. And you're really trying to say that Ida is the problem, not the medical establishment. Lucky you, you must have children who aren't dealing with life altering situations being ignored by doctors.

[Justina For Justice]

125. No Studies Because Drug Companies/Government Doesn't Fund Them.

I was diagnosed with colon cancer and began searching for possible treatment modes. Cannabinoids, from marijuana, have been reported in "in vitro" and laboratory rat studies to kill cancer cells without harming normal cells. Wow, that could be very significant, except there are virtually no clinical trials involving human patients. Why? Because of our government's absurd marijuana laws.

I also learned that a substance in Turkey Tail mushrooms (PSK) reduces cancer tumors, but again, there have been few clinical trials in the U.S. Why? Likely because the drug companies don't see a future profit in it, so they don't fund studies. It would be hard for them to patient a common mushroom. Japan, on the other hand, has done a lot of work on turkey Tails/PSK and it is commonly used in cancer treatment there. (See www.fungi.com)

Much of the western medical profession chooses its treatments based on large clinical trials, if no money is to made, no such trials take place. They write off "success" stories for such substances as anecdotal and ignore them. The same situation likely pertains to the micro-nutrients discussed in this post. There is no money to made from studying things which are non-patentable, thus no studies of their efficacy.

It is all about the drive for corporate profits. My chemo drug costs $2200 a month for 56 pills, there are high profits in that, thus they have been the subject of clinical trials. As usual, follow the money.

[tavalon]

144. As long as you don't look, there never will be

I'm a veteran. I'm amazed at how well the medical establishment is able to not look at things they don't want to see with regards to autism. I see no reason why it wouldn't be the same here.

[CreekDog]

174. so we're supposed to spend millions studying her idea without a causal link?

while most scientists have to justify such a study by hypothesizing or explaining the causal link that makes such a study worthwhile?

do you even science?

no. don't answer that. it was rhetorical. enjoy Natural News.

[IdaBriggs]

186. How about spending $1K?

Tell you what - we'll donate the product, AND I will pay up to $5k for the time to evaluate the data from your own custom picked group of patients. We can even provide data about those who seem to get the best results, too.

Part of the problem is that this *isn't* a multi million dollar investigation with big pay-offs. It is a correctable nutrient deficiency that has been misdiagnosed for fifty years, to the point where it is, at some level, a multi-million dollar industry in support of its victims.

Sorry - my cynicism is showing. People get busy. These things happen. This is not malicious; it is ... ignorance and too much information that "everyone knows" to the point where they miss the obvious.

[CreekDog]

187. why should we spend any money on your idea?

you don't even know what a causal link is and why it matters that you don't have one for your "idea".

we're supposed to fund your idea when many ideas which have thought out the scientific basis connecting cause and effect go unfunded?



maybe you can get your veterinarian to fund it.

[IdaBriggs]

189. Dude, I just offered to pay for it, and I have identified

the five different causes for these problems multiple times in this thread, along with expected outcomes.

Not a dime out of your pocket. Now, if you can actually *do* a study, I will *GROVEL AT YOUR FEET* to get it done.

If you are just being snarky, I will thank you for the kick, and move on.

Put up or shut up -- got a resource, or are you just wasting my time?

[Gormy Cuss]

190. Butting in here to say that 5K wouldn't even buy a feasibility study.

To conduct the research properly with a view to proving a link would take hundreds of thousands of dollars or more. To conduct basic research to demonstrate even a weak correlation would be at least 50-100K.

There's just no way to do bonafide medical research on the cheap. For one thing, it's human subject research and there are many precautions necessary to do that ethically. For another, a well defined, well controlled sampling procedure would be necessary to reduce selection bias. With human subjects that often means identifying a comparison group rather than conducting a randomized trial but either way, it's an expensive proposition. Then there's the collection of sufficient, standardized medical data and monitoring predicted outcomes against subject experiences. Then there's the statistical analysis and reporting with the opportunity for peer review.

If the outcomes are as strong as you claim, one well constructed study would be all that was needed to implement trace mineral supplementation. If however the the outcomes are not as clear, one study alone would not be enough to influence recommendations.

IIRC you have a self-selected study sample and the reports of improvements are some combination of physician and parent input. Self-selection is problematic because there are many factors that may make your sample unrepresentative. Reporting by persons with a vested interest in positive outcomes (in this case, parents) is also problematic because there is an incentive to ascribe outcomes to a favored treatment even when other interventions are happening concurrently and may be responsible for the change. Those are just two reasons off the top of my head why a researcher wouldn't try to fund a study based on your data.

[IdaBriggs]

193. I have been told that $5k could probably get us a study design.

But you are right - everything else has to happen, too. And we have to take into account the self selection criteria issue you raised - these are "google warrior" parents or else they wouldn't have found us; I had over one hundred parents who didn't respond to required follow up or possibly changed their mind, and with the limited resources, they just fell off the grid.



I believe it is going to end up being two separate studies - one by the neonatologists with the preemie/low birth weight babies, and one for the "diagnosed" neuro kids. Since CP isn't "formal" really until age 4, that cohort may even end up being divided by age/diagnosis. (There may even need to be a third concentrating strictly on the sensory for the autism population.)

I am not sure how I will find the funds to help cover the studies, but because I am a firm believer in "clean hands" I think (if the two researchers I have hopefully been intriguing) do get involved (at two separate institutions), I think I will just appeal for directed donations to them.

If I am right, the numbers I am running could result in a 60% decrease in infant mortality rates, with corresponding drops in reported morbidity as well in my preemie population, with most benefits possibly being seen in the micro-preemie community. But those numbers assume compliance with the protocol, and I am not sure how to account for "non-compliance" especially in my at risk low income population.

One of the potential researchers (who specializes in neonatology) was intrigued about running it simultaneously with another study they are doing, but had concerns about that. Also, POLITICS - the cerebral palsy researchers are a small group, and I totally torqued one of them off when I said I would recommend this intervention prior to surgery. He also didn't believe the miralax issues, despite the FDA documentation.

Another issue is dosing - the initial two who saw benefit (mine) I just doubled up the prescribed liquid iron. We have since done a great deal of analysis of correction amounts for known deficiency issues - calcium, iron, vitamin d, etc - and consulted with multiple pharmacists. Some of the parents varied dosing and took breaks to get those "shocking changes", and there seems to be some kind of "pause in improvements" every six-to-eight weeks.

If you are interested, I will send you links to the Neighbor Girl videos. We have a short composite one where the spasticity in her hands goes away in about sixteen weeks, but the longer "interview" ones are extremely interesting. For example, at sixteen weeks she almost started crying because there were no more changes (eye roll) but was reporting being able to go up and down stairs under her own power, feeding herself, rolling over in bed at night, and had gained eight pounds/grown several inches in height. (Keep in mind she had been confined to a wheel chair, couldn't use her hands, couldn't remember the alphabet, had been chronic failure-to-thrive her entire life, and had no "core"strength when she started.). Fortunately I was able to show her family the first video, and they were surprised at how many changes in their lives had just become the "new normal."

Appreciate the courtesy, Gormy. Happy to share anything with anyone who will listen - we are not making this up, but it does need stringent investigation, and I am not a member of that community. I have only gotten this far because of pure persistence - plus, I have yelled at a couple of people. One of the folks from a very prestigious institution got totally yelled at - eight years of infertility, three miscarriages, non-stop vomiting the entire pregnancy, pre-eclampsia, two months premature, NICU drama, oxygen and a heart monitor, and suddenly, we get LUCKY?!?!

Uh, no. Not buying it.

He listened. He also agrees someone should investigate this.

SOMEONE.

[IdaBriggs]

196. Oh, and I would be happy to provide some free product to any physician

willing to do a case study write up on any patient of their choosing and what happens - that shouldn't take much money. Seriously. Have meeting; detail status; give botte; follow-up in two months; validate any changes. If changes have occurred, follow-up in two more months, then write case study report.

[CreekDog]

191. are you fundraising here for human, medical experimentation?

i realize that you will at least get a qualified veterinarian to oversee the whole shindig...

despite that assurance, i have concerns.

[IdaBriggs]

192. I am NOT fundraising here, thank you very much.

I was hoping you actually had some connections. Appreciate the snark.

Thank you, anyway. Sigh. (Yes, it was a long shot, but desperate times and all.)

[tavalon]

143. I see no references.

Ida, with her limited ability and study group, has some references. She needs more. She likely won't get it unless Smith Kline can get the supplements pulled from the shelf and make them prescription. Then we'll get multicenter double blind studies. Until then, we get Ida. I'm so used to this and it makes me as mad as the day I lost my religion. Yeah, medicine isn't a science, it's a religion and there are tight reins on it's acolytes.

[zazen]

55. please don't dis citizen/patient advocates

As one example, Lyme Disease wasn't taken seriously until a bunch of pissed off mothers figured out what was happening and demanded physicians pay more attention. Treatment is still held back by an ignorant cabal of physicians in IDSA against whom at least one state attorney general is bringing a lawsuit and against whom an international group of physicians, researchers and patients are advocating, year after year after year.

Patients and their advocates can become highly informed and gather enough anecdotal data to warrant more systematic study, and by the way, physicians and researchers can be really blind to anything outside of the dominant paradigm. It's much more complex than you're making out.

This woman sounds like she's onto something. Perhaps what she's onto is the "prophylactic" use of these supplements for a greater range of conditions. Perhaps you are largely agreed--that in the absence of any medical condition, supplements are not useful, but for a greater range of conditions than currently documented, any number of supplements or their combinations (the identification of which is in its infancy and requires a lot more study) are helpful.

Magnesium is catching hold among a few doctors as useful in a range of conditions, but there's a lot less clinical research to back it up than we'd like. Should we not take it because NIH or big Pharma haven't decided to do a widespread study yet? I can tell you it's worked for me. I'm not waiting seven years (or never, given the awful federal funding levels) for a study to tell me that.

There's a big gray area here and you're insulting hardworking citizen advocates who are busting their asses to read peer-reviewed research and contribute to widespread good. This is clearly not a "woo" person. Do y'all need to be reminded of all of the "woo" drugs and treatments that doctors have insisted patients endure (while dismissing patients' concerns as non-compliance) that turned out to be grossly harmful?

Let's agree on this: if we had single payer, limited profits of big pharma and invested more heavily in clinical trials for supplements and other inexpensive interventions that won't make a lot of money for someone (other than saving billions in medical expenditures), we'd have a lot more useful information and could help a lot more people.

[IdaBriggs]

57. I think I'm in love with you.

Thank you.

[tavalon]

146. I've found it's really hard to post things like this here

For such an open minded group of folks, there are certain areas where the minds are firmly shut.

[Kurovski]

195. We have overseers on the internet, so-to-speak.

and some folks just like to be contrary.

Then there are the folks who just plain disagree.

But beware of (or think twice about) what we call the "passionate anti-advocates". Many fronts needs must be protected for profit's sake! D:

[IdaBriggs]

197. I don't think it has to do with money for many of the "anti-woo" folk.

I think they really believe people are being taken advantage of, and want to stop it. It is the "only tool is a hammer" thing, and even we "woo" people have to watch for it. Researchers and physicians go through intensive training to be able to regurgitate existing data points, and coming up with "new theories" really isn't something that has a pay-off. And honestly, since most of the pharmacy stuff doesn't actually "cure disease" but instead addresses symptoms, and the human population comes with a wide variety of medical/social history, at the end of the day I think they do their best to identify known problems, and solve them based on proven research.

Who wants to be experimented on by an uninformed medical student? Right now the worst time to go in the hospital is when the latest crop of residents hit the floors, and don't even get me started on the 90-hour work week training period, which is INSANE.

But if proper nutrition can *prevent* chronic disease (which is kind of a big deal, and mostly accepted, if not applied), then that changes the game, doesn't it?

[Spider Jerusalem]

70. I'm not insulting anyone.

I'm pointing out that the article that brought on this spate of ill-directed ire doesn't actually say anything relevant to anything that the person I'm responding to said. What it says specifically is that multivitamin supplements and antioxidants have not been shown to have any positive benefit or effect on outcomes in mortality and morbidity in the cited studies. Since the frequently-claimed benefits of vitamin supplements and antioxidants include cardiovascular health (which is a specific subject area of one of the cited studies) and cancer (another specific subject area of a cited study) this seems rather relevant and the authors' conclusions (that vitamin supplements are not of any benefit) are supported by the available data.

[tavalon]

141. Dr. Jerusalem

Ms. Briggs does know what she's talking about.

[Voice for Peace]

127. It comes down to trusting your own personal experience with stuff.

As a preteen I had severe vitamin deficiency.
Whatever we were eating, didn't have enough nutrients.

I have no problem with the woo of nutritional supplements,
I swear by it. They've probably kept me alive.

My experience with doctors has been much like what
you describe. They can't deal with information or
possibilities outside of their box. Not true of all
doctors, of course.. but most I've seen.

"Physician, heal thy self" is good advice.

[COLGATE4]

21. THIS ^^^^^

[eqfan592]

40. Well said. It's unfortunate that the woosayers will completely ignore this.

Alternative medicine run the range of being a waste of resources to being outright dangerous, especially when used in lieu of science based medicine.

Misinterpretations of published articles by people who are not qualified in the first place to offer an education interpretation of said article seems to do a great deal of harm.

[Drahthaardogs]

137. Yes

Deficiency is not comparable

[PADemD]

2. K&R

[IdaBriggs]

26. Thank you.

I realized I am only replying to the detractors, which is rude.

I appreciate the kick and rec.

Thank you.

[Voice for Peace]

128. it's also probably a waste of time..

there is a contingency of unyielding posters here
who love to jump on anything they deem woo, or
otherwise contrary to their understanding of science.

Knowledge is endless, and human science will
never catch up with it.

[tavalon]

147. Especially if they are refusing to look at it

And when most of the medical studies are being sponsored by drug companies, it's easy to see why the "natural" fixes are ignored and even demonized. Follow the money. How many times do we say that on DU?

[Voice for Peace]

183. I can never comprehend their virulence in opposition.

If stuff works for somebody, I don't feel a need to prove
them wrong.

The only reason there is anything like conventional
medicine is because people (as in the OP) made
sensible observations and connections, and started
doing research.

We trust the so called experts -- but not the
expert within our own selves. Luckily there have been
people who followed their instincts and found cures,
causes, bugs, and whatnot.

I'm sure pharmaceuticals started out with a lot
of good people doing breaking research. As soon
as it became so profitable, everybody was making
up stuff. I imagine the same is true with the
"alternative industry" -- but I just shop at my coop
and buy what suits my bones.

[SidDithers]

4. Science based medicine smacking down the multi-billion dollar supplement industry...

those 3 articles are the opposite of woo.

Edit: the three articles are:

Oral High-Dose Multivitamins and Minerals After Myocardial Infarction: A Randomized Trial

Long-Term Multivitamin Supplementation and Cognitive Function in Men: A Randomized Trial

Vitamin and Mineral Supplements in the Primary Prevention of Cardiovascular Disease and Cancer: An Updated Systematic Evidence Review for the U.S. Preventive Services Task Force


Nowhere do the articles say that pregnant women shouldn't take folic acid. Your advice to do so is irresponsible and is a prime example of woo - taking specific science-based research and extrapolating it to where it doesn't apply.

Sid

[IdaBriggs]

14. My "advice" on ignoring the benefits of folic acid was pure sarcasm.

And I believe I was pretty clear on that, so thank you for demonstrating the "cherry picking of reality" these publications are putting out.

My point is that the only way some of these "studies" hold water is if one ignores the fact they IGNORE DATA that does not agree with their conclusions.

"Nutritional supplements are a waste of time and money - see, we investigated it totally randomly without understanding the role of nutrition or the way the body uses it. Trust us - we're doctors. And any evidence to the contrary is strictly anecdotal/should be ignored."

My background is computers, which is one of the most reality based professions out there. If you do something, then *this* should happen. If it doesn't, figure out why. I've got five different sources for micronutrient deficiency identified -- prematurity, maternal deficiency, malnutrition, absorption issues and exposure to teratregens -- and for four out of five children with *symptoms* (failure to thrive, neuromuscular issues including hyperspasticity/hypotonia, sensory processing) all of a sudden they start seeing "magical improvements brought by the fairy god mother of stop-imagining-that-and-get-back-in-your-wheelchair!"

We can turn some of the symptoms on and off like a water faucet. We can compare children who use the protocol we are advocating against similar populations that *don't* follow the protocol, and guess what? There are life-altering differences.

But only 83% of the time - and I don't know WHY!!!!



I welcome rigorous investigation, but not by people who don't know what they are talking about. There are way too many people out there with "unexplained miracle stories" (including my own family) when they used simple "outside the pharmacy" thinking, and since I believe in "repeatable miracles" = science, I am calling "crap job of investigating" on these guys.

Food matters. Shocking only the idiots, teenagers who do not eat healthy foods while pregnant have less positive outcomes than people who follow basic healthy pregnancy eating guidelines. Turns out "spinach salad" has more vitamins and minerals than a bag of doritos and a diet coke, even though one has more calories -- gee, which one is better for a pregnant woman to eat?

And get this - the vets have been using this stuff for DECADES, and the better understanding of the nutritional needs of our livestock/pets has resulted in increased life expectancy, in some cases nearly doubling it. By every measurable, nutrition matters.

But people aren't like other mammals, right? Slap a label on it, and call them all the same - that's science for you!

[phil89]

129. well

If you don't know why and you're making assumptions, it's just an argument from ignorance. I don't get how a person with a background in computer science should be given more credence than medical professionals. It seems irresponsible.

[tavalon]

148. 83% is huge

Likely, this is a multifactorial problem. You've stumbled upon a huge part, but probably not the whole part. For instance, something medical science is looking at is intraventricular hemorrhage among preemies. It's possible supplements could help and yet not completely with children who already have IVH. Or not. That part is at least being studied as we speak.

[geckosfeet]

5. Oh dear. I missed the part where the Annals of Internal Medicine paper

used the term "woo".

I am sure it was an oversight/editorial decision on their part.

[IdaBriggs]

15. Apparently you missed the DU discussions about "woo".

Please use your search feature. They are educational to say the least.

If you can't find them, I can link you to them. I certainly want to make sure you are clear that the inference is that the good folks at the Annals of Internal Medicine are firmly on the side of the anti-woo angels.

Ignore any evidence to the contrary, please. It is the only way to let editorials like this one stand.

[geckosfeet]

68. Not at all. Just did not see it (the word "woo") in the article you referenced.

BTW - I am in the market for liquid supplements as I do have some issues with digestion.

[frustrated_lefty]

6. On credibility

This was recently published in Science: http://www.sciencemag.org/content/342/6154/60.full

"On 4 July, good news arrived in the inbox of Ocorrafoo Cobange, a biologist at the Wassee Institute of Medicine in Asmara. It was the official letter of acceptance for a paper he had submitted 2 months earlier to the Journal of Natural Pharmaceuticals, describing the anticancer properties of a chemical that Cobange had extracted from a lichen.

In fact, it should have been promptly rejected. Any reviewer with more than a high-school knowledge of chemistry and the ability to understand a basic data plot should have spotted the paper's short-comings immediately. Its experiments are so hopelessly flawed that the results are meaningless.

I know because I wrote the paper. Ocorrafoo Cobange does not exist, nor does the Wassee Institute of Medicine. Over the past 10 months, I have submitted 304 versions of the wonder drug paper to open-access journals. More than half of the journals accepted the paper, failing to notice its fatal flaws. Beyond that headline result, the data from this sting operation reveal the contours of an emerging Wild West in academic publishing.

....

Acceptance was the norm, not the exception. The paper was accepted by journals hosted by industry titans Sage and Elsevier. The paper was accepted by journals published by prestigious academic institutions such as Kobe University in Japan. It was accepted by scholarly society journals. It was even accepted by journals for which the paper's topic was utterly inappropriate, such as the Journal of Experimental & Clinical Assisted Reproduction. "

It's an interesting read, and a healthy reminder of the need for both skepticism and independent confirmation.

[jsr]

11. Great article.

[SidDithers]

12. Good article...

Predatory, open access journals are a topic I've raised a few times at DU:

http://www.democraticunderground.com/10023827981
http://www.democraticunderground.com/10022644059


That's not the case with the journal in the OP. The journal, and articles, appear good, but the conclusions drawn from those articles by the original poster are suspect.

Sid

[IdaBriggs]

28. Everyone in the industry needs to get published.

At one level, it is like a third grade science fair. I am not in the industry nor do I sell anything. I do however, keep insisting this should be investigated.

I am starting to change my mind.

[tavalon]

149. Why?

Because people are fighting you here? They always do. I stopped posting about autism long ago on this venue. You will open no minds and no minds from here will start reading the journals that you and I eat for breakfast. I have not found this venue to be open minded on these sort of issues.

If I didn't have a dog actively dying, an 18 year old in the other room who still poops in his room and a full time job taking care of the babies you speak of, I would be on this like a fly on shit. I'm bookmarking it for when life leaves a small opening.

[intaglio]

8. Have you never heard of the term "hypervitaminosis"?

Hypervitaminosis A - Teratogenic, raised intracranial pressure, double vision, papillodema, eczema, hair loss, inflamation of the mucus membranes, enlargement of liver and spleen, liver failure, increased calcium in the blood leading to heart arhythmias and loss of bone density, and the formation of renal stones. In elderly people the bone loss can lead to increased osteoporosis so vitamin A supplements should not be taken if they have a good diet.

Hypervitaminosis B6 - nerve damage, phantom pains and pins and needles, staggering, reduced sensation to touch as well as heat and cold.

Hypervitaminosis D - polydipsia and polyuria, calcinosis of joints and kidneys, renal failure, constipation, hypertension, tetany, and seizures.

Hypervitaminosis E - Bruising and extended bleeding, tissue death of the bowel premature infants.

But of course vitamins are good for you ...

[loudsue]

16. Well, it kills the assumption that they don't DO anything.

Anything is going to hurt you if you do too much of it....even water. Your argument is stupid.

[laundry_queen]

29. LOL you said what I was thinking. nt

[IdaBriggs]

17. Yes, vitamins are good for you. So are minerals.

So are essentially fatty acids, and essential amino acids. If you don't get all of them in appropriate amounts, you *will* die.

These issues are extremely well documented for the "major vitamins and minerals" -- look here: http://fnic.nal.usda.gov/food-composition/individual-macronutrients-phytonutrients-vitamins-minerals/vitamins-minerals if you trust those crazy government folks. You might have even heard of stuff like "scurvy" (vitamin c deficiency related) or "anemia" (iron deficiency).

The *trace* mineral symptoms are not as well known - teeth grinding from manganese deficiency is always a fun one to watch go away - and while anyone who has read their cereal box in the morning knows "vitamins and minerals are good for you" not everyone understands you need *all* of them to have a healthy body, and if you are short in one, odds are better than good you are short in the ones you aren't measuring.

If you are able to absorb them from a healthy food supply, AWESOME! Reality is that we have a high percentage of people who can't -- and things go downhill pretty quickly.

Yes, you need to not be an idiot and don't overdose, and yes, you need to be aware of the interactions.

But "don't take them" is the dumbest thing I've read in a long time. Take them APPROPRIATELY.

And I would have had more respect for this publication if they had documented / validated absorption rates (wait-a-minute - that matters? gasp!) instead of just making the "nope, doesn't work - move on!" editorial.

Oh, did you mistakenly think they did?

Trust them - they are doctors!

[intaglio]

49. The vast majority of people get their trace nutrients from their food

A very, very few have a physiological deficit or a poor enough diet to warrant minimal supplements and the important word is minimal. Do you actually know how much or how little of your RDA your diet provides? Because if you do not then taking of "supplements is, at best, a waste of money and at worse actively deleterious.

Vitamins A, D and E are fat soluble and hence, taken in small excess is stored in your body rather than being directly metabolised. Thus you will only slowly begin to suffer the ill effects by which time the permanent damage will have been done.

Iron is very necessary but in excess causes ulceration of the stomach, nausea leading to metabolic acidosis - which will shut down the brain and liver.

Zinc is a very useful micronutrient essential to the proper functioning of the immune system but in even low excess causes nausea, diarrhea, reduced white cell count, probably increases fatty deposits in the blood vessels, reduced iron and copper function and a reduction in the size of the red blood cells.

Copper assists the body store iron and is efficiently handled by the body. But excess causes vomiting, vomiting of blood as well as damage to liver and kidneys if chronic overdose is the cause.

Manganese in excess leads to having an illness similar to Parkinsonism.

Of course if you wish to you can ignore physiology and biochemistry and I wish you a happy life - what you have of it.

[IdaBriggs]

50. Yes, the vast majority do get adequate trace minerals from their food.

Last edited Tue Dec 17, 2013, 04:22 PM - Edit history (1)

And then there are the ones who don't. As I said in another post, five DOCUMENTED causes of deficiency --

1) prematurity
2) maternal deficiency (prematurity or absorption issue like Crohns)
3) malnutrition
4) absorption issue during periods of high growth/"leaky gut" issues
5) exposure to teratregens (ON EDIT - somehow got changed to estrogen!)

Symptoms include failure to thrive, developmental delays, "floppy baby" syndrome, neuromuscular issues (hyperspasticity/hypotonia), sensory processing issues, chronic constipation, lack of appetite, CVI and microcephely.

For four out of five children with these symptoms, correcting the deficiency (at safe levels - duh) results in improvement in the symptoms. The younger the child, the faster the results (infants have reported improvement in as little as 72 hours), and other factors include GMAC mobility level, and personality (with "risk taker" personalities reporting faster responses, which is extremely confusing, and I'm still confused by it.) Unfortunately, that means one out of five see no improvement.

And only an IDIOT would think I am advocating for people to overdose; however, the good folks at NIH have well documented numbers for the MAJOR micro nutrients, while the TRACE ones have *NOT* been investigated except by the folks involved with animal husbandry issues, which is crazy!

AND THIS NEEDS FURTHER INVESTIGATION, which is like pulling teeth, especially when editorials like the one I am ranting about get posted saying "no need for further investigation!" because they are ignoring what is happening as "anecdotal" instead of documenting it themselves.

[intaglio]

64. And all of those are diagnosed - by doctors.

By doctors using correct biochemical assays. By doctors who know their symptomology. By doctors who are scientifically trained.

As opposed to diagnosis by rank amateurs hawking overpriced sugar pills with trace elements that can poison the recipients ... nice job.

[IdaBriggs]

67. Get it right - LIQUID TRACE MINERALS.

If you are going to throw stupid stones, get it right.

[intaglio]

91. Sugar water then

they're still quacks and con men.

[tavalon]

152. By doctors who have been taught at the knee of other doctors who.....

Evidence Based Medicine is the new buzz phrase, backed by some actual evidence, but not nearly as much as you might think.

Intaglio, if the doctors were actually doing their jobs and not just what the pharmaceutical companies tell them, there would be no necessity for parents to become de facto doctors. It's fucked up and the fact that you don't see it as fucked up says you are either ignorant (I doubt that) or willfully ignorant (?) or a doctor. Doctors do get their feathers ruffled so easily.

[intaglio]

160. Tell you what

You prove to me that these alternative practitioners are not coining money from their fake nostrums, scare stories and damaging practices and I will accept your criticism. Sugar pills and sugar water with minimal additives are not effective cures for anything.

[tavalon]

164. That is not my goal

As a matter of fact, on DU, it is never my goal to try to open minds to medical cures that are being ignored by the mainstream medical establishment. I've found it is merely a process meant to infuriate me and open no minds.

I only climbed into this one because I admire Ida and knew she had offered herself up as chum to the close minded. What she's done intrigues me because I work with the population she has worked with. I wish it would be funded so that large, multicenter, double blind studies can be done. I doubt they ever will.

[tavalon]

151. You have some knowledge

Build on it. There is work to be done.

[intaglio]

162. Non-sequitur of the month

I have enough knowledge to know what is dangerous and to check the claims of snake oil salesmen.

[tavalon]

165. How about reading the journals?

You seem adequately interested to try to quash Ida's theory. Go forth and read and read and read. Read the crap and read the possible and read the stodgy and sometimes poorly done journal studies. Once you've spent, say 2 to 5 years of all of your free time doing that, come back and I bet, we can have a very interesting conversation.

[antiquie]

178. What do you recommend for pernicious anemia? ~ nt

[intaglio]

179. A visit to the Doctor n/t

[antiquie]

181. Doc says vitamins, obviously a quake.

[intaglio]

182. Good, so you are taking "vitamins" under medical supervision

not due to the sales pitch of a quack. Anyway that is B12 ...

[Lydia Leftcoast]

80. I don't take A or E supplements, but I've never

taken enough of either B or D supplements to suffer any of the side effects.

As my brother noted, 2000IU of Vitamin D is what you get from 10 minutes of exposure to outdoor summer sunlight, so I don't take any Vitamin D supplements in the summer.

[tavalon]

150. Well, at least you picked fat solubles

That gives some credence. That said, do you know what the unofficial RDA for vitamin D is in the great northwest? I promise you it isn't 400 iu daily. Guess what hypovitaminosis D causes? Cancer for one. Depression, calcium loss, hair loss, rickets in extreme cases.

[intaglio]

158. B6 is water soluble

and yes overdosing it is a thing, usually amongst the fools who inject B6/B12 mix "for a boost of energy". Medics know Hypervitaminosis A is pretty usual amongst health food faddists and if you bothered checking the sub thread you will see I pointed that out hypervitaminosis is more common amongst the fat soluble vitamins because they are stored.

I also included some information about the deleterious effects of mineral supplements.

I do not care if you are against evidence based medicine, in fact I would be happy for you to buy a fleam or a scarificator although you might have trouble getting Ward's Pills.

[tavalon]

163. I'm not against evidenced based medicine

I long for us to actually move into that venue. We are dipping our toes into the water and I guess I have to be satisfied with that. Progress is so slow.

[another_liberal]

9. Big Pharma wants us to buy prescription drugs, nothing over-the-counter.

They want us to get our supplements only with a doctor's prescription. Then they can charge eight times what over-the-counter vitamins now cost.

[IdaBriggs]

30. I worry about this -- there are a lot of manufacturers out there

and I personally want to see them *all* applying appropriate manufacturing processes to both creating, testing and marketing their products. Blank checks one way or the other do not make me happy, and since I can't visit their facilities, I don't mind inspectors making sure things are kept clean, etc.

My opinion.

[tavalon]

153. Kirkman labs

does a great deal of testing on their products. I suspect, though, that you already knew that.

[eqfan592]

38. And here comes the march of the woo's. nt

[another_liberal]

73. Why the snake flag?

Do you think people who resent the power and political influence of major Pharmaceutical companies are equal to Tea Party Wingnuts? Are you defending the marketing practices of the Pharmaceutical industry?

Your reply to my post is rather vague. Please clarify what it is that you mean.

[eqfan592]

76. The flag is part of my signature.

Read the text under it.

As far as what I mean by my post, the "big pharma conspiracy" argument is usually one of the first ones rolled out when people are advocating a position founded on pseudo-science.

[another_liberal]

79. Well, at least that's cleared up.

You feel that anyone who criticizes the huge, enormously profitable Pharmaceutical industry or it's predatory marketing practices is guilty of promoting "pseudo-science?"

Have I go that right?

[eqfan592]

85. Nope, never said that.

However, somebody implying that the only reason why pseudo-science is labeled as such is because "big pharma is suppressing it!" IS promoting pseudo-science.

[another_liberal]

87. I hope whoever is doing that has the good sense to stop at once.

On the other hand, calling major Pharmaceutical companies unprincipled, avaricious and cruelly manipulative in how they market their wares is not promoting pseudo-science. I personally value the real scientific research and development those companies do. It is not their scientists who choose to jack up prices of life-saving drugs to levels as high as the market will bear, and more.

[eqfan592]

89. We agree then.

And sadly, plenty of folks even right here do that. Sorry if I jumped on you so quickly. Nine times out of ten in these debates it seems the "big pharma" card ONLY gets rolled out to promote pseudo-science. Or at least it feels that way.

[another_liberal]

92. It was not my intent to offer folk cures or anything of that sort.

I trust modern antibiotics far more than I do any of old granny's poultices.

[polichick]

72. Yes - and whenever they see an herb working, they work to change it...

just enough to get a patent and then try to get the natural form off the market.

FUCK BIG PHARMA and the Congressional whores who service them.

[another_liberal]

74. Hear! Hear!

Well said.

[Savannahmann]

10. Not really related except by the closed mindedness of medical profession.

In 1996 I got a mutt puppy. She was a true Heinz 57. I took her home, got the usual shots, and had a good dog that loved me from day one. She ended up being a little destructive, as evidenced when we came home and found she had stayed in the finished garage and not only torn up the linoleum while we were at work, but chewed and chipped away at the edge of the concrete step.

Decision made, she needed to go outside and live there except in extreme weather. Then we noticed a problem, her hair was getting splotchy. We took her to the vet and she had Mange which is really parasitic mites. We started the treatment which consisted of rather caustic chemicals mixed into her bathwater. She hated it, and would whine as I bathed her. I did not get her down to get fixed while this was going on, I knew I was supposed to, but I was rather busy at work and a lot of things were going on. A neighbors dog jumped into the yard, and then she was very pregnant. I know, I'm a terrible human partner for not getting her fixed.

I stopped the treatments, terrified that the caustic chemicals would harm the puppies on the advice of the vet. Her hair cleared up, and I mean no sign of the mange. OK, puppies born, she's nursing and a great mommy to them. Patient, and loving towards her babies. I work with a local rescue group and find homes for all the little darlings. I make plans to get her fixed, when I notice the mange coming back. It's not as bad as it was, far less widespread, but it is back. As I start the treatment, the neighbors dog jumps the fence again, and again I have a pregnant girl. Once again the mange is completely gone. I mention to the vet that it appears that the PH of the animal is affected by pregnancy, and the mange is just not there anymore. She does some scraping and finds no sign of the mites.

Then she chews my ass telling me how insensitive I am even considering keeping my dog pregnant to fight the mange. That wasn't my point at all I protest, I am more fascinated with the effects of the pregnancy and the changes her body is going through and it's affect on the mites. I'm thinking that if we can isolate what chemical is driving the mites away, that we can come up with a less painful treatment for them.

After being told I don't know what I'm talking about, and that what I am suggesting is absolutely impossible, and I must get my dog fixed as soon as possible after this next litter I leave wondering if I am the one who is crazy.

But I know what I saw, and I lived with that dog for nearly six years until fate took her from me. After that second litter, she never did get mange again. She was fixed, and loved as long as I had her. But to this day I wonder if some change in her body chemistry during the pregnancies was enough to make her distasteful to the mites. For more than four years I kept watching for it, and for that time it never showed up again. The ailment was cured, despite being incurable.

[svpadgham]

13. Oh I'm going to catch hell...

Maybe being a crazy pregnant bitch had something to do with it.

[IdaBriggs]

82. By the way...

I thought this was funny. Thank you!

[IdaBriggs]

31. Thank you for sharing the story.

In hindsight, when my husband and I were doing rescue, we had a litter that had suffered from malnutrition, and looking back, it looked a lot like some of the cerebral palsy symptoms. The vet recommended a "high quality puppy chow" and the problem corrected itself in a few weeks. Now I kick myself, because the information was there the whole time, but to me looks like it just isn't being applied - and realistically, I am the first person I know of who gave two month old preemie babies liquid trace minerals along with their (physician prescribed) polyvisol and liquid iron. Since then I have learned that when babies "spontaneously recover" their pediatricians have a tendency to throw up their hands and call it a miracle.

Well, I am a woman of faith, but this looks like one of those crazy "repeatable miracles" that mean "science" is involved.

It is frustrating.

[Lydia Leftcoast]

84. When I was growing up, we had an old dog who really perked up

with vitamin supplementation.

He contracted distemper on one of his frequent runaway adventures and nearly died. After the vet pronounced him fully recovered, we noticed that he seemed to have aged a lot in those couple of weeks, formerly lively and enthusiastic, he was just dragging around.

The vet gave us some liquid vitamins to mix into his food (which, of course, is supposed to be nutritionally balanced). The effect was startling. Within two or three days, he was back to his normal self.

[loudsue]

18. Ida, there are a bunch of us who know what nutrition and natural remedies do to help people.

You just have to ignore the "woo" sayers, because they don't know how stupid they are. They love to stand on their "science", but it fails, too, and when it does, it can also be fatal.

Every person is different, which is why their science fails. Many people cannot take a great many pharmaceuticals (like myself), and for me, the alternative remedies work great up to a point. I think, as do all the physicians in my doctor's office, that it takes both allopathy and naturopathy to bring people to their optimum health.

Those who dis naturopathy have an agenda, and they don't see it. It is actually very republican in its ignorance and closed-mindedness....you can't teach them, and you can't argue with them, because they don't get it and they never will. All the evidence in the world won't convince them.

Probably the majority of people on DU agree with you and me about naturopathy and holistic medicine working hand in hand with allopathy. Most countries in the world believe as you and I do. But, as I say, there are some people here, and they travel in packs, that are so full of hate and ignorance that they will never benefit from nature's finest gifts.

It's their loss. We can't teach them anything because they can't hear, and because of their fears. Just leave them be. They'll never get it.

[IdaBriggs]

34. Bottom line for me: whatever works.

There are definitely times when I am grateful for my local hospital - my daughter swallowed a penny, my son needed stitches after an accident with a slide - but the guy with the PhD in clinical nutrition is my "go-to" for preventative care unless all else fails.

When my mother was diagnosed with cancer a few years back, we took her to the nutrition guy to load her up with supplements to support her during her treatments. I also suggested she attend religious services at multiple locations to cover all of her bases! Lol! She recovered very nicely, and her white hair started turning black like a reverse skunk. It was very punky, for a 70-something year old woman.



Whatever works. I've said it before: "If your only tool is a hammer, everything looks like a nail." And realistically, that can apply to nutritional issues, too. Not everything can be solved with a healthy diet, and some basic vitamin-and-mineral supplements, but a shockingly large amount of problems can be mitigated with reasonable judicious application.

It seems so obvious - how can they miss it?

[eqfan592]

42. Whatever works?

Except if you can't provide evidence (and no, anecdotal stories are NOT evidence) that it works, then exactly HOW can you say you go with "whatever works?"

That's ALL evidence based medicine is about. Provide per reviewed studies that have been replicated that can demonstrate the effectiveness of a treatment, and you will gain the support of the science based medical community. Refusal to do so relegates you to the dustbin of pseudo-science.

[Marr]

53. +1

Woo is never more than one good study away from being accepted by the scientific community. If it works, why not prove it?

[SidDithers]

58. Well said...

Sid

[IdaBriggs]

65. WHAT A BLOODY BRILLIANT IDEA!!!!

WHY DIDN'T I THINK OF THAT? HOW STUPID CAN I POSSIBLY BE?



Honest to heavens, do you think I haven't been TRYING to get that done FOR FIVE-AND-A-HALF YEARS? First they said, "oh, you just got lucky." Then they said, "oh, those other people got lucky, too." Then they said, "well, obviously that child was misdiagnosed." Most of them think it is *really* interesting. I've learned the difference between clinicians (who see the patients, and don't do research) and the researchers (who rarely see patients, and area *really* busy with their own already funded projects).

They *see* the kids, they can't explain the changes, the parents give them the information, and they IGNORE IT BECAUSE THEY ARE BUSY and doing studies is A LOT OF WORK.

In the meantime, until those FREAKING NIT-WITS ACTUALLY INVESTIGATE they don't believe it.

"Nyah, nyah - we're not looking! You're making it up!"

The NICU is my own personal passion, especially because it looks like we can PREVENT neuromuscular issues (including those caused by level three and four bilateral brain bleeds). I posted this http://www.democraticunderground.com/11429532 on DU back in August. (Not in the Project - just one of the random parents who followed our protocol.)

Sorry for the shouting - if it was that easy, I wouldn't be throwing conniption fits. And if you have a phone number of someone willing to investigate, I'll find the funds to pay for it.

I've got a list of people who haven't stepped up yet, and the organizations you would *think* would be jumping all over this - well, the politics are INSANE.

Plus, I'm not a doctor, so I am "full of woo." Ask the folks on this thread - half of them just kick it to snark at me.

[tavalon]

155. Yeah, well, I'm guessing she might have tried to get that funding

My suspicion is the funding just won't be there. No money to be made.

[Marr]

180. Guessing and big assumptions are the problem.

I've seen no suggestion that she's tried to get funding for a study-- only that she's insisted that the scientific establishment spend its time and money pursuing what amounts to a hunch on her part.

Unless she can argue some scientific, causal connection between the treatment she's suggesting and the problem (and offering a few anecdotal tales is not evidence), scientists are not going to be interested, and rightly so. It's not their job to prove or disprove every wild claim that comes out of the woods-- and those claims are not exactly in short supply.

[IdaBriggs]

184. You are mistaken on multiple points in your post.

1) We have 121 *heavily documented case studies* which has moved us beyond anecdotal. We also have 41 other *heavily documented case studies* where it didn't do any good at all. (One child turned out to have been misdiagnosed; I keep flipping back and forth about whether to include him.)

2) We have offered to raise funds to pay for studies, and been told we were in the pipeline. That was a year ago.

3) One physician told me four years ago we weren't going to get this formally studied no matter what we did, and jokingly offered half a million to the first place that would investigate. His money was completely safe - and that was a shocker to me. (Keep in mind this was when we thought it only helped babies / didn't realize it seems to prevent neuromuscular issues, possibly including cerebral palsy.)

4) I have been told that there will be no funding provided to a small non-profit from organizations like March of Dimes or UCP. Both organizations have expressed interest in funding such things if we can get a "real" doctor to do it. I am still working on those things; I need to write this damn report, and summarizing this is HARD.

5) Hospital politics has been very interesting. If I had picked "just one" maybe I could have gotten it investigated (so they could be the "discoverers&quot , but I didn't understand that five years ago when I started this crusade.

6) NIH told me to write an article for a journal. NIH also wants this investigated. NIH cannot help me get this investigated, and this type of discovery does not have a category in the medical journals.

7) I have attended conferences on infant mortality related issues and cerebral palsy; this "personal intervention" may be getting me someplace.

8) Public health officials have varying responses depending on their place in the world. The nurses (bless them!) get excited, but can't "prescribe" (but can make sure doctor recommended things, including vitamins and such are taken). Administrators are more worried about the legal liabilities, which is apparently the role of administrators in the world.

9) At one point I was very excited because the Director of Science for March of Dimes was excited; totally non-related, he was laid off that same week due to budget cuts. Afterwords they suggest we apply for one of their grants, but made it clear we wouldn't qualify/would be rejected.

10) I also reached out to the autism community because of the sensory issues; it doesn't seem to do much for the rest of their issues, but if it can stop sensory induced meltdowns, I hope that can positively impact quality of life issues for that population. Hopefully someone will investigate.

Want to know the most frustrating thing? Babies can be treated with a three month supply of this stuff for $24, while children over ten pounds can get a two month supply for $65 -- this stuff is NOT expensive.

If you think this is how I *want* to spend my time, you are mistaken. I have been blessed with two healthy children, an enjoyable day job, and a loving spouse, while this "hobby" is frustrating, annoying, impossible, and outright infuriating.

But you know something? I am not going to give up, because the families / children we are helping are worth it. With all of the blessings I've been given, me whining "this is HARD!" is embarrassing. My kids are HEALTHY. Most of them would sell their souls for that gift. Should I keep silent while they suffer, just because I hate getting ridiculed by people who it is, at some level, apparently my job to educate?

Not my first pick of a passion, but whenever I start feeling too sorry for myself, I remember the lady in the NICU who didn't get to bring one of her twins home, and my friend who lost one of hers at eleven months. Then I take a deep breath, and try to come up with the next step on this impossible journey....blind, with no road map, but still stumbling along.

[IdaBriggs]

56. Evidence based medicine is currently ignoring the evidence.

If I didn't think this could be replicated, I wouldn't be fighting for it so hard. We've managed to replicate it a documented 121 times out of 162 children.

Part 1: Find something that works, that no one has seen before. (check)

Part 2: Ask someone to investigate. (check)

Part 3: Provide evidence from the evidence based medical world explaining why it works. (check)

Part 4: Provide evidence from the veterinary world explaining why it works. (check)

Part 5: Demonstrate there is efficacy outside of a small sample size of two. (check)

Part 6: Demonstrate there is efficacy outside of a small sample size of ten. (check)

Part 7: Demonstrate there is efficacy outside of a small sample size of fifty. (check)

Part 8: Demonstrate there is efficacy outside of a small sample size of one hundred. (check)

Part 9: Demostrate there is efficacy outside of a small sample size of one hundred and fifty. (check)

Part 10: Get told that since there are no peer reviewed medical studies, you imagined the whole thing. (check)

Part 11: Jump up and down screaming about it because if you aren't a member of the "science based medical community" or have a relationship with someone who is, not much is going to happen. (check)

Part 12: Lather, rinse, repeat.

Do you think we can get it investigated "properly" if the sample size is a thousand? All I am saying is that everything they know about something for fifty years is wrong - that always go over big, right? Why, they'll beat down my door to validate my findings!

[eqfan592]

60. provide an example and we can talk.

Otherwise it's just so much bull.

[Orrex]

61. What is the specific claim that you're making?

Your 12-part list is vague and could apply to any of a zillion pseudoscientific concepts rightly rejected as bullshit, and since you've provided no specific information, we have no way to assess your experience with this issue.

Further, I'm profoundly skeptical that Part 10 unfolded as you have described, and I'm not entirely sure why you would consult a veterinarian to support your claims about an (apparently?) pediatric treatment. Further, when you say "demonstrate there is efficacy," what do you mean exactly? Did you "demonstrate" this efficacy in a formal study? In a YouTube video? On a KickStarter campaign? You need to be specific and unambiguous.

You seem to have identified yourself as an oppressed victim of widespread scientific conspiracy, but that's not necessarily the case. It is not unreasonable to require you to present your findings in an established format in order to facilitate peer review and replication of your findings.

All I am saying is that everything they know about something for fifty years is wrong - that always go over big, right?

If you're really asserting that you've overturned 50 years of testing and experience, then you're describing a momentous change, and it's up to you to demonstrate this. It will almost certainly require a sample size of more than 162 participants, and the scientific community is under no obligation to validate your findings for you.


It's clear that you find this inconvenient, but it's not a campaign to suppress your revolutionary findings. The structure of review/replication is iintended to prevent cranks and wackos from claiming that their crackpot theories have been proven.

[cthulu2016]

66. Beautiful Post ^ ^ ^

[IdaBriggs]

78. Let me spell it out for you. I think I've made it clear elsewhere,

so pardon the repetition.

Certain forms of neuromuscular issues (including certain forms of cerebral palsy, sensory processing, developmental delays, etc.) appear to be caused by correctable micronutrient deficiencies. Those deficiencies can be caused by one or more of five separate reasons, including but not limited to prematurity, maternal deficiency, malnutrition, absorption, or exposure to teratregens. Symptoms include failure to thrive, etc. (see other post). Correction dosage is based on age/weight with easily available over-the-counter supplements available under a variety of name brands in a liquid format. For four out of five children, there can be significant improvement in symptoms within sixteen weeks, with younger children seeing faster responses. Parents can usually identify if there children are going to see improvement within eight weeks, with a pattern of improvement that includes a change in bowels within ten days, increase in appetite between fourteen and twenty-one days, and then increases in weight/height, and decreases in symptoms detailed in other post. Speed of improvement varies based on age when correction begins and amount of deficiency (micro-preemies!), with some tools (like the GMAC) showing promise for identifying correction rates.

If I could present the findings in an established format, I would. Unfortunately, because I am *not* an MD, that means standard publication / "peer review" is out, and convention attendance requires me to put out thousands of dollars as a Vendor *despite the fact I have nothing to sell.* There *needs* to be rigorous investigation, because I still don't know why one out of five see no benefit/it doesn't work for every child, and better controls need to be put in place.

I am *not* the victim of a scientific conspiracy - I am stymied by an insulated world where I do not have the cachet to explain what is going on, and any documentation I provide, including the health history of my own children, is dismissed as "anecdotal". Well, we documented 162 children within an inch of their lives for nearly a year, with results that are rightly called "miracles" by many, and *nothing is happening*.

Yes, the scientific community *should* be validating or disproving what I am reporting; if I am wrong, then they should be warning everyone about the dangers of this version of "woo" and if I am right, then they should be shouting it from the roof tops.

But I don't have an "in" to that community, other than talking / brainstorming with folks who don't want to be credited unless it is proven. I am a computer geek - not a medical researcher - and yes, I can explain it because it is already in the textbooks, but is not being applied in the NICU or by the pediatric neurologists, who should be falling all over themselves to take this task over, but are *really* busy with their own pet projects.

I reference the veterinary studies because there is already significant animal research on this topic, and it has been proven to be beneficial in the animal husbandry professions.

And it is darn inconvenient, but you know what would be *more* inconvenient? Living with myself if I wasn't doing everything I could to get this investigated, including ranting about the fact that nit-wits who don't know their heads from a hole in the ground dismiss the "miracle stories".

Until it is proven, it is "woo" -- and because it is "woo", it can't be investigated.

Lather, rinse, repeat.

[Orrex]

107. Thank you for summarizing your experience.

I don't doubt that your intentions are good, but at this point you lack the training and authority to make a claim that would invalidate 50 years of established science. That doesn't mean that your claim is therefore false; it means that you simply aren't qualified to assess it scientifically. But in spite of your lack of training and your lack of cachet, you still confidently declare that you're right and they're wrong? On what objective basis?

Your claim also doesn't pass the smell test, to be honest. Even if you yourself can't present a formal report to document your findings, I think that a great many researchers would jump at the chance to be immortalized for upseting half a century of error while simultaneously saving thousands of children. I don't believe that they're all too busy with other projects or that they can't at the very least refer you to others who might take up the torch. Isn't it curious that no one appears ready to endorse your claims? Is everyone part of the dogmatic establishment?

you know what would be *more* inconvenient? Living with myself if I wasn't doing everything I could to get this investigated, including ranting about the fact that nit-wits who don't know their heads from a hole in the ground dismiss the "miracle stories".

This is why you sound like a would-be victim of a conspiracy of suppression, because those who don't accept your amazing (and as yet unverified) theory are "nit-wits who don't know their heads from a hole in the ground." In other words, your idea is correct, but the ignorance of dumb professional scientists is keeping you down.

Do you accept the possibility that your findings might be incorrect? Or are you so certain that you're right that anyone who disagrees must be stupid? Do you see how this is problematic?

Yes, the scientific community *should* be validating or disproving what I am reporting; if I am wrong, then they should be warning everyone about the dangers of this version of "woo" and if I am right, then they should be shouting it from the roof tops.

No, you have it exactly backward. I could as readily demand that the scientific community disprove my perpetual motion machine and every other perpetual motion machine in turn. The revolutionary claim must be supported by the claimant; it need not be refuted by the establishment. That's really the end of it.

[IdaBriggs]

112. Orrex, you make valid points.

I must reasonably accept the reality that *I may be wrong.* Now, if I thought I was wrong, I would *not* be wasting my time; when we started asking parents to report for the project, we had to come up with *objective* standards of measure, and since neuromuscular issues run a gamut, that was quite a challenge. And keep in mind that prior to the experience of the neighbor girl, my knowledge of the subject matter for neuro issues was best summarized as "non-existent."

I came into that portion of the discussion with absolutely no pre-conceived notions because I didn't understand why what happened was significant, and while we had reasonable certainty that what was happening with the babies under one year of age was unheard of, the first child to "spontaneously recovery / be formally misdiagnosed" could have been a complete coincidence.

And the parents were skeptical. I made life more difficult for myself by refusing to take any money from them, because parents of special needs children are already pushed to the breaking point (in my opinion) and since I couldn't promise *anything* except "look, this happened for this child when we did this, so let's try it again and see what happens, and please document any changes if you see any" it was crazy.

No one expected it to actually work. One could hope, but seriously, the first half dozen we lucked out and we had a range of children with different issues, but lucked into early 100% success. (That was cool, but the numbers dropped the larger the sample size got, and have stayed consistent at 83% or 4 out of 5.)

We measured "easy" things: change in appetite, weight/height, bowels, tone/strength, then added cognitive (!), speech/communication, sensory and energy. Quantifying "cognitive" was especially challenging, and I have 117 pages of detail on the speech/communication section alone.

I have *nothing* to gain from this endeavor. I receive no financial compensation of any sort, and all of my efforts are "volunteer". I am *not* interested in becoming a doctor, and I have kept "clean hands" from the manufacturers. All data - good and bad - is shared. Some of it breaks my heart; since my background is computers, I struggle with the 83% number because if it works like I *think* it works, then shouldn't it help everyone? But it doesn't, so that means there are still pieces of this puzzle missing.

My data is available to anyone who wants to look at it. I *welcome* inquiry. There is so much about this we just don't understand.

But I remain adamantly convinced that anyone who investigates is going to see what we have seen; if I didn't think it was important, I would move on with my life, because I am *busy* myself.

You can contact me, and I will share information / the sources for the conclusions. With over one hundred children seeing the same results, *somebody* should be looking to find out if what I am saying makes sense.

Bluntly, food matters. Really, at the end of the day, that is all I am saying. FOOD MATTERS.

Sigh.

[Orrex]

122. "Food Matters" is a highly robust assertion, in part because no one has ever disputed it

As I mentioned elsewhere, I'm not qualified to analyze your data, but I think I'm equipped to ask a few questions about methodology (some of which you may already have answered in previous posts that I missed):

1. What were the age ranges of the children studied? Were they the same (i.e., all studied from age 6 months to 4 years, etc.), or were they all different ages?

2. How long were the children studied?

3. How did you control for diet during this time? How closely did you monitor food/nutrient intake?

4. How many children were in the control group?

5. How did you control for non-obvious physical causes that might produce neurological effects similar to those posited to be diet-related?

6. Of the children studied, how many demonstrated "improvements" that might have been normal in longitudinal observation? That is, are the improvements within the normal arc of development? How do these compare with the control group?

7. In cases where children showed rapid, dramatic improvement, did the improvement diminish when the nutritional supplement was removed?



I'm not actually asking you to answer these questions, but rather to consider some of the reasonable concerns that might be raised about the methodology used to generate your data, methodology that would have to be reproduced in order to validate your findings via repeated experimentation.

[IdaBriggs]

172. Yeah! Someone who CARES enough to ask!!!

Let me share some of what we've gathered, keeping in mind that we really didn't know what to expect because everything was on the table.

The youngest child to join this phase was five months, and we accepted children through age twelve (although I suspect at least one parent had a 14 year old and just fudged to get in - who am I to judge?). The diagnosis were varied, but included multiple forms of cerebral palsy, developmental delay, various combinations of hyper spastic and hypotonic symptoms, brain bleeds, sensory processing, microcephalic, CVI, seizures, and chromosomal abnormalities. (This list is off the top of my head - everything is in a database format - computer geek, remember?) Although we initially believed the deficiency issues were going to be mainly caused by prematurity, we did accept children with traumatic birth issue related diagnosis, because why not?

After the sensory processing thing happened, we ended up with an autism subset. They saw the same 4 out 5 relief of sensory issues, but no other benefit was reported by them.

We recorded birth data where available (most had it, but we also had some adopted children where the data was not available - one of the microcephalic children who saw an increase in skull size was FET), including gestational age, birth weight, some basic data from the mother (preemie herself/absorption issues like Crohns), GMAC level, medications being taken, and other supplements being taken. Once they started the protocol we recorded starting weight/height, and quantities of micronutrients taken.

Every two weeks parents reported changes (or lack of) in eight categories: bowels (this was generally one of the first signs of a positive response to the protocol, and usually occurred within ten days - also, this population is known for its chronic constipation issues), appetite (most didn't like to eat, but between days 14-21 began eating as if they were teenage boys), weight/height, strength/tone, cognitive, speech/communication, sensory and energy. We tracked everyone for a minimum of six months to a year.

Keep in mind we didn't know what to expect. One of the "traumatic birth" babies gained weight and started crawling. Another had no change. We couldn't control for diet, and there was no control group - bluntly, the control group is all of the other people who weren't trying this.

The dramatic changes were completely outside the realm of expected. Core strength does NOT improve in two months, with children who had never been able to hold up their own heads doing so - except we had kids who did exactly that. Clonus doesn't ever go away - except it did. Microcephalic children do not see an increase in skull size at age 8 - except they did. And GMAC level does not generally change after age four - except it did A LOT. (One kid told his mom he didn't want to use his walker when going across a snowy parking lot, so the mom said okay, at which point the kid Picked It Up and RAN across the parking lot!) Chronic failure to thrive in 74% of my kids was gone within 90 days, and jokes were made about how the Project didn't cover new clothing or the increase in your grocery bills.

The changes were not normal development based on the diagnosis. Even more surprising, the children continued to see improvement even during these periods of high growth.

Some of it made no sense - the "worse side" seemed to get better first in several children; one girl had a headache and slept for three days, then started using the left side of her body normally. (Her brain hemorrhage was on the right side of her brain.) Measuring in a quantifiable way changes in speech/communication has been giving ME a headache (I have 117 pages of raw data reports on that topic alone!), and cognitive was one we were very skeptical about reporting. (Multiple children were diagnosed ADD/ADHD and were reported as "calmer, better able to focus" which made me wonder if they were really undiagnosed sensory kids.) But the parents were the judges, and since they could back everything up with data from their medical and therapeutic support teams, we recorded it.

When children went off the supplement, some saw regression in strength/tone, and sensory came back within 48 hours. As soon as they went back on, the benefits returned. Several parents began scheduling "breaks" because there seemed to be a "dramatic visible change" when they restarted.

There also seemed to be a personality component - children with siblings or who were "risk takers" reported improvements in a dramatic fashion (see parking lot story). Another child got out of a wheelchair and walked up a flight of stairs at a playground to go down a slide. One of my "risk averse" children crawled across the living room on her own, while one mother called me in shock to explain her son had gotten out of bed and was beating on the television. He was five, and had been carried out of bed his entire life; his mother had to child proof because he was officially mobile after six weeks!

Not every child saw these types of changes. We recorded data about those children, too, because this puzzle is one that has a lot of pieces to it. Pediasure and Ensure do not have the trace minerals necessary for health - were some of the changes because their bodies were finally getting what they needed? Zinc deficiency is associated with a lack of appetite - correcting for that meant they started eating, which meant they started getting more of what they needed in their food supply. Is it "brain repair" or simply building muscles? I don't have all of the answers, and my list of questions just gets longer.

The goal was to generate enough data to see if there was justification for further investigation. I am convinced we did that. If we can't get the formal studies done, I will put it all on the web, and let parents decide for themselves.

In the meantime, I have a bunch of data, and really no one interested in looking at it. I am an anal retentive geek, and these parents were/are awesome.

If you want to see it, I will be happy to share. Parent summary reports through February 2012 are on the web page at the link in my sig line.

[tavalon]

157. Actually, people like Ida and myself actually know about our medical subjects of interest

than 99% of working doctors and probably over 50% of research physicians. Does that mean I'm calling us doctors? No, but if she has done as much research in her area as I have in mine, she is an expert in that area. No degree needed, just motivation and an understanding of statistics, which in my case, was required for me to get my BSN. Lies, damned lies and statistics. I can't remember who spoke that truism but it is, in my experience, heartbreakingly true.

[Orrex]

177. Then present the data. You can't have it both ways.

Last edited Wed Dec 18, 2013, 01:25 PM - Edit history (2)

people like Ida and myself actually know about our medical subjects of interest than 99% of working doctors and probably over 50% of research physicians.

What is your basis for that daring claim? Has your expertise been evaluated in some formal manner? A nearly unmatched expert in one's field should easily be able to back it up in a verifiable way. I'm not being snarky about this, either; if someone claimed to have unparalleled knowledge in a particular field, then I'd expect her to be able to demonstrate it.

Think of Marisa Tomei in My Cousin Vinny. She had encyclopedic expertise of cars, but before her testimony could be accepted as credible, she was required to demonstrate her expertise. To do otherwise, to accept her claim on faith, would be grossly irresponsible.

Copious informal research does not guarantee expertise, by the way. Jenny McCarthy has done extensive research on why nutrition and vaccinations have caused her son's autism-like symptoms, but she is nearly 100% incorrect in her conclusions. That doesn't mean that she's stupid or malicious; it means that her "expertise" hasn't been subjected to rigorous formal testing and turns out to be fundamentally flawed.

When a truly monumental claim is made ("my research invalidates 50 years of scientific understanding&quot , then the claim absolutely must be supported by more than an assertion of one's own expertise and a reference to mountains of ill-formatted data. This may seem like an inconvenient or burdonsome requirement, but that's too bad. If one is seeking the endorsement or recognition of the existing medical establishment, the it is up to the applicant to follow the existing protocols. You simply can't demand, for example, that the establishment expend the resources to research and prove/disprove every proposal that comes across the wire. The initial responsibility is the claimant's.

Lies, damned lies and statistics. I can't remember who spoke that truism but it is, in my experience, heartbreakingly true.

Incidentally, I thought that the quote came from Mark Twain, but apparently its history is a subject of some dispute. More information.

[tavalon]

156. As I said earlier, I gave up trying to open minds here

I jumped in because I knew you had just offered yourself as chum and I'm just damn sick of it. You know you aren't going to get funding and you know why and you know as I am getting an inkling, that a lot of babies are going to spend their lives with neuromuscular problems and it might not have been necessary.

I'm really, really sorry.

[loudsue]

104. Provide per reviewed studies that have been replicated that can ...."

Not any "per" reviewed studies ever done on vitamins, herbs? Ignorant. Just plain ignorant. I would show you links to hundreds, if I thought you would be capable of believing them. You are NOT capable of that, because your agenda is too dogmatic. It would be a waste of anyone's time to try to convince you. And I really don't CARE if you believe it or not. It's your loss, not mine.

[eqfan592]

105. Oh yes, hundreds of them. Ok then.

And they all had their results replicated, right? But I just won't listen, so you won't bother sharing your wealth of knowledge.

[840high]

136. Excellent way to look at

it. I like to combine traditional medicine with alternative. My doc supports me in this. I'll continue taking my Vit D, COQ10 and B complex.

[tavalon]

154. By willfully not looking

I have a personal grudge against a certain doctor/researcher who doctored his numbers when they didn't say what the pharmaceutical company wanted them to say. They rapidly placed him on the payroll at $660,000 a year. I'm fond of saying that's the price of a soul these days.

[eqfan592]

39. Of course we love to stand by science.

If it can't be proven empirically to be effective, then exactly what is the point?

Your ignorance of reality, along with your wholesale investment into an industry that can and does do a great deal of harm to many people by encouraging them to try "alternative" medicines that are ineffective instead of seeking the real treatment they need, is very telling.

[Vashta Nerada]

48. At least I haven't wasted $45/bottle of vitamin supplements that come out in my pee.

Who's the stupid one now?

[phil89]

130. Well

if these remedies worked, they wouldn't be alternative.

[MattBaggins]

138. You said allopathy

there is no such thing. You entire argument can be dismissed.

[DeSwiss]

19. ''Magic is what we call any science we do not understand.'' ~Arthur C. Clarke

/ig

[IdaBriggs]

23. The science of food and its supply is terrifying.

We know from the vets that "nutritional deficiencies during pregnancy impact two generations down" and unfortunately, we have a large population of children who were born during periods of war and/or famine; we also have the first generation of preemie women surviving to adulthood, and they are giving birth (NOT ALL OF THEM!) to children with undiagnosed deficiency issues. Toss in the people with issues like Crohns, add in the overuse of antibiotics in two year olds with ear infections (which kill off good micro-organisms as well as bad ones), and we are screwed.

Do we even need to discuss why fresh fruits and vegetables are better for you than processed?

Crave salty things? Have some chips - empty calories (no nutritional value) that will make you feel like you are getting the minerals your body is missing from its food supply. Then open another bag, because after eating over a thousand calories from the chip bag and sucking down the over-sized daily "special soda drink", half an hour later, you are starved.

It is your body telling you its missing something.

Sigh.

We are so screwed - our food supply is heavy on calories / low on nutrients.

Magic.

If this doesn't get understood better, we're never going to make it to the stars.

[reformist2]

83. Yep. Which is why I never dismiss out of hand, ideas the scientists would instantly reject as 'woo.'

[DeSwiss]

106. I'd appreciate it if they'd just clean up their own shit first......

...before they starting pointing fingers. The very practices now called ''woo'' used to be called medicine until they figured a way to keep people alive without having to cure them. More money to be made like that.

- And it's the 'ol America Way.....

100,000 Americans Die Each Year from Prescription Drugs (taken as directed), While Pharma Companies Get Rich

Why do we let them continue to poison us, and then go right back to the same people for the cure? For example, what about this ubiquitous product that's everywhere:

Triclosan

Triclosan is an antibacterial and antifungal agent. It is a polychloro phenoxy phenol. Though many consumer products contain triclosan, according to the Food and Drug Administration (FDA) at the present time, there is no evidence that triclosan in personal care products provides an extra benefit to health beyond its anti-gingivitis effect in toothpaste. MORE

Triclosan Uses

Triclosan has been used since 1972, and it is present in soaps (0.10-1.00%), shampoos, deodorants, toothpastes, mouth washes, and cleaning supplies, and is incorporated into an increasing number of consumer products, such as kitchen utensils, toys, bedding, socks, and trash bags. It is also found in health care settings in surgical scrubs and personnel hand washes. Triclosan has been shown to be effective in reducing and controlling bacterial contamination on the hands and on treated products. More recently, showering or bathing with 2% triclosan has become a recommended regimen in surgical units for the decolonization of patients whose skin is carrying methicillin-resistant Staphylococcus aureus (MRSA) following the successful control of MRSA outbreaks in several clinical settings. Use in surgical units is effective with a minimum contact time of approximately 2 minutes. MORE

Polychloro phenoxy phenol (from which Triclosan is derived)



Polychloro phenoxy phenols (polychlorinated phenoxy phenols, PCPPs) are a group of organic polyhalogenated compounds. Among them include triclosan and predioxin which can degrade to produce certains types of dioxins and furans. Notably, however, the particular dioxin formed by degradation of triclosan, 2,8-DCDD, was found to be non-toxic. MORE

Antibacterial soaps' dirty secrets?

Triclosan is a potent inhibitor of estradiol and estrone sulfonation in sheep placenta.
https://www.ncbi.nlm.nih.gov/pubmed/19299018

Abstract

The personal care product Triclosan, 5-chloro-2(2,4-dichlorophenoxy)-phenol, is widely used in consumer products as an antibacterial agent and is increasingly found in the environment as a contaminant of sewage sludge and wastewater. This compound has been identified in plasma and urine of people in the United States, Sweden and Australia. Triclosan is known to inhibit sulfonation of phenolic xenobiotics and is structurally related to inhibitors of estrogen sulfotransferase, such as polychlorobiphenylols. In pregnancy, the placenta is an important source of estrogen, which is needed for normal fetal development and successful parturition, and estrogen sulfotransferase is thought to play an important role in regulation of estrogen availability.


Triclosan in Cosmetics, Personal Care Products Increases Allergy Risk
Triclosan - an antibacterial chemical found in toothpaste and other products - can contribute to an increased risk of allergy development in children. This comes from the Norwegian Environment and Childhood Asthma Study, in which the Norwegian Institute of Public Health is involved. Similar results are reported in the USA. MORE


Soap Ingredient Triclosan Linked to Muscle Weakness
Aug. 14, 2012
By SHARI BARNETT, M.D., and LIZ NEPORENT, ABC News Medical Unit


Soap may hold a dirty little secret in the form of a chemical called triclosan. Used in antiseptic hand soaps, shaving gel, toothpaste, deodorant and other hygiene products, a new study has found the chemical can weaken muscle contraction.

When researchers at the University of California at Davis exposed the individual muscle fibers of fish and mice to triclosan, they found it impaired the normal contraction mechanism. Both skeletal muscle and cardiac muscle no longer operated normally, and this was true when the mice and fish were tested themselves, or their muscle fibers were examined individually in a test tube.

Mice showed up to a 25 percent reduction in heart function measured within 20 minutes of exposure to the chemical, as well as an 18 percent reduction in grip strength -- yes, mice have grip strength -- for up to 60 minutes after exposure. Fish that swam in triclosan-tainted water for seven days performed worse on swimming tests than those that did not.

While the evidence for toxicity is largely based on animal studies, some experts have said that it might affect humans too. MORE

[font size=8]So which one are you more afraid of harming your health -- a tablet of Vitamin C, or this shit?[/font]

[CreekDog]

132. the purveyors of woo aren't the ones that warned you about dangerous or unneeded supplements.

quite the opposite. they'll sell them to you without any scientific proof that they help and don't harm.

and scientists, not woo purveyors have been the ones sounding the alarm about overuse of antibiotics and anti bacterials. the woo purveyors have not --many of them would simply have you not take an antibiotic at all.

[tavalon]

159. We are finally taking a look at antibacterial soaps

Thank goodness.

[hedgehog]

24. The medical establishment and pellegra:

Joseph Goldberger's theory on pellagra contradicted commonly-held medical opinions. The work of Italian investigators as well as Goldberger's own observations in mental hospitals, orphanages, and cotton mill towns, convinced him that germs did not cause the disease. In such institutions, inmates contracted the disease, but staff never did. Goldberger knew from his years of experience working on infectious diseases that germs did not distinguish between inmates and employees. Lombroso had speculated that spoiled maize caused pellagra.

Goldberger found no evidence for that hypothesis, but diet certainly seemed the crucial factor. Shipments of food which Goldberger had requested from Washington were provided to children in two Mississippi orphanages and to inmates at the Georgia State Asylum. Results were dramatic; those fed a diet of fresh meat, milk and vegetables instead of a com-based diet recovered from pellagra. Those without the disease who ate the new diet did not contract pellagra.

Goldberger's Filth Parties

Angry and frustrated, Goldberger would not give up trying to persuade his critics that pellagra was a dietary disorder, not an infectious disease. He hoped that one final dramatic experiment would convince his critics. On April 26, 1916 he injected five cubic centimeters of a pellagrin's blood into the arm of his assistant, Dr. George Wheeler. Wheeler shot six centimeters of such blood into Goldberger. Then they swabbed out the secretions of a pellagrin's nose and throat and rubbed them into their own noses and throats. They swallowed capsules containing scabs of pellagrins' rashes. Others joined what Goldberger called his "filth parties," including Mary Goldberger. None of the volunteers got pellagra. Despite Goldberger's heroic efforts, a few physicians remained staunch opponents of the dietary theory of pellagra.



http://history.nih.gov/exhibits/goldberger/docs/pellegra_5.htm

[IdaBriggs]

32. Thank you for sharing this.

I did not know about this story. I know about the ulcer guy - he's one of the my heros - but wow!

Wow.

[madokie]

33. Every doctor I've ever asked has said the same thing to me, NO

I do not and should not be taking vitamin or mineral supplements. Blood work tells the whole story.

[IdaBriggs]

36. Then don't. Each person is different, and if you don't have deficiency issues,

then don't correct for them.

But that doesn't mean the person sitting next to you has the same medical condition. They should *also* be making decisions based on their own personal health issues.

And if you do have symptoms that your doctor can't explain, investigate. My favorite story involves myself - I ended up in an iodine deficiency situation because I switched the family from table salt (which had iodine added to it) to sea salt, which did not. My kitchen table was killing me; the symptom was absolute and utter exhaustion, and the solution was both easily testable (pick up tincture of iodine from local pharmacy, draw one-inch dark circle with the bright orange liquid, and wait for 24 hours - if still present, no deficiency; if gone before then, it was because my body was sucking it up due to deficiency; mine was gone in half an hour - doh!), and fixed easily with an over-the-counter supplement for less than $15, and the table salt being back on the table.

[tavalon]

161. No doctor could tell me why I was infertile, had anemia, food intolerances

and joints that hurt so much I cried. So I did the research on my own. And then I demanded a full work up for Celiac Sprue. I came back positive. Now, 13 years later, I'm menopausal so we can't test the infertility, no anemia, no joint pain unless I have a gluten accident and of course, I have food intolerances. I can't eat anything with gluten. And I haven't, purposely, in 13 years.

Blood work doesn't tell the whole story. It never did. My doctor likes to treat my labs. She gives me thyroid supplements based on my numbers. My numbers may feel better but I feel better when I double my dose. Alas, then she sees my much lower number and thinks she doesn't have to increase my thyroid medicine By the way, the loss of my thyroid function was also from the undiagnosed Celiac.

[eqfan592]

43. Ya know, the amusing thing is that even tho you grossly misinterpreted the posted article...

...your title still holds true. Such misinterpretations ARE why physicians lose credibility with those unable to interpret the data presented correctly, and unwilling to admit to such when the error is pointed out to them, repeatedly.

[Vashta Nerada]

46. Be pissed all you want, but that editorial is right.

Vitamin supplements are nothing more than expensive pee.

But I'm sure you know more than doctors now.



And nowhere in this article do they mention anything about prenatal vitamins, vitamin k, and folic acid. I'm not sure what your rant is about, or whether or not you understood the editorial.

[FSogol]

52. Ask a sanitary engineer sometime how many pills, vitamins, & supplements pass completely untouched

thru the human digestive system and end up clogging sewage grinders and other equipment. I'm amazed that no one has thought of washing/sterilizing them and reselling them to the vitamin and supplement gobblers.

[IdaBriggs]

59. Sigh. Yes. Digestible nutritional supplements are a big deal.

If you can't digest it, it does no good. Hence one of my *many* issues with the editorial, in that they did no research to determine what the blood levels of the different nutrients they are dissing actually *were*.

For the children with sensory processing issues, we have several who are not able to absorb micronutrients from their food supply (because that happens in the lower intestine) but are able to do it when they are provided in a *liquid* form, which is absorbed into the blood stream directly through the stomach lining (if I understand it correctly). This can be caused by the infamous "leaky gut" syndrome so many families are seeing, or even pyrrhole disorder (which has to do with excess amounts of copper, which causes problems with calcium/magnesium absorption, which causes a domino list of other problems - and oh-by-the-way, estrogen in boys is treated like copper, and isn't *that* interesting when we have four times as many boys as girls with autism symptoms, hmm), or by something we haven't identified yet.

[cthulu2016]

62. So that article said pregnant women shouldn't take folic acid? Or did you imagine that?

[Holly_Hobby]

63. Amazing, and I believe every word

because of my story.

Magnesium is my wonder-supplement. 11 years of tests and many thousands of dollars and 22 doctors couldn't determine the cause of my muscle weakness and spasms and inability to sleep more than 4 hours a night.

To make a long story short, I read where most of us are magnesium deficient because the soil is depleted. I also learned that at the center of every plant molecule is magnesium.

I started taking magnesium citrate mixed with a bit of diet soda, after the first dose, I slept 9 hours straight through, and continue to sleep 7-8 hours/night. My muscle weakness and spasms went away after about a week...yes, one friggin' week!

If you have those annoying little eye twitches all the time, try some magnesium. They're the first symptom of magnesium deficiency.

Sometimes doctors just don't know WTF they're talking about.

[IdaBriggs]

81. Kids with these trace mineral deficiencies can't get magnesium

or some of the other micronutrients from their normal food supply, which is why (we think) the liquid supplementation seems to work. And we've been finding if you are deficient in one area, you are most likely deficient elsewhere in the "untested" issues, so we follow the recommended veterinary practice of "feed them a healthy amount of everything" and so far it seems to be working 83% of the time.

The children with dystonic cerebral palsy usually end up adding extra magnesium (helps with the constipation/slows their twitches); what we see is if you don't correct the "other deficiencies" first - like for at least two months - the magnesium doesn't seem to help. I'm not sure why that happens - we need blood panel analysis, and don't have those resources at this point in the process.

Thank you for sharing your story. I am so glad you found out your problem!

[Puzzledtraveller]

69. Need a break?

[IdaBriggs]

86. Yes, thank you.

I really need a break.

Every time I want to quit this STUPID project - my kids don't have problems, so why should I care? <== my evil thoughts - I keep getting reminded of this woman in the NICU who lost one of her babies before our twins were born (and we tried to pretend we didn't know, because we could have lost one of our babies), and then I see the picture one of the moms I am friends with has of her eleven month old twins - they were micro-preemies, and she lost one of them at eleven months old because he had no "core strength" and got a cold that turned into pneumonia and killed him while she went to fetch his brother to the hospital.

One of the first things the children start getting is "core strength" - oh, God! This is HARD!!! But you know what would be harder?

Having to bury your child. I don't know what hard is.

But I'm still tired, especially of having to explain this to people who think "well, wouldn't they be beating a path to your door if this was true?"

Uh, no. This crap doesn't work that way, and if you aren't a member of the private club of physicians, you aren't supposed to be smart enough to figure out what they've been missing for so long: nutrition matters. Seriously. Not just the vitamins and the major minerals, but the trace minerals, and the amino acids, and the essential fatty acids.

We need it *all* for healthy functioning.

And efficacy is impacted by delivery method. Don't even get me started on the challenges of having pharmacists help me figure that one out! "We give TPN in the NICU - " It has to be ORAL and you aren't doing *all* of the *trace* minerals, and we need *all* of them!!!!



Sigh.

I think I need to walk away from my computer for a bit. I actually yelled at someone in "all caps" because they made what they thought was a common sense suggestion, which got me sucked into this mess five and a half years ago. "Well, that seems obvious - surely they will take over and get right on investigating that, right?"



Sigh.

[nadinbrzezinski]

75. Idda the article driving this rant does not say

Pregnant women should not take prenatal vitamins and folic acid.

After that, you might be onto something, but please don't tell us the editorial says what it does not.

[IdaBriggs]

90. Nadine, this is what the article says:

Evidence is sufficient to advise against routine supplementation, and we should translate null and negative findings into action. The message is simple: Most supplements do not prevent chronic disease or death, their use is not justified, and they should be avoided…The evidence also has implications for research. Anti-oxidants, folic acid, and B vitamins are harmful or ineffective for chronic disease prevention, and further large prevention trials are no longer justified…With respect to multivitamins, the studies published in this issue and previous trials indicate no substantial health benefit.

So, neuromuscular issues are not chronic disease or death (except they are). "Further large prevention trials are no longer justified" (despite the GLARING issues with these studies). And "multivitamins have no substantial health benefits" because this article, from a prestigious journal says so.

I took the article, and pointed out the ridiculous nature of the claims by comparing them to the well documented benefits seen by the other populations. Do you really believe that there are no benefits for pregnant women and babies? And what makes them so special that they see benefit, but this other population does not?

How about the words "seriously flawed study with erroneous conclusions"?

Why don't I just write them a quick editorial explaining what they've missed?

Oh, that is right! I am not a physician, therefore I don't know what I'm talking about. All I can do is rant about it here on DU.

Heaven help me, these people would have killed me not that long ago; the idea they actually had to WASH THEIR HANDS when moving from an autopsy to the birthing chamber was just as *crazy* for them as the idea that some of these problems are caused by long term nutritional deficiency issues.

Sigh.

[nadinbrzezinski]

94. Pregnancy is NOT a chronic condition

Diabetes is a chronic condition. Both had folic acid recommended for decades. Which one do you think they mean? My understanding of the English language says diabetes, not pregnancy. But hey, your mileage might vary on this.

Your research is onto something, which mind you, is not chronic.

Yes, I read a couple other stories on this by the way already. And this is the last I will have to say on this thread. Onto the trash bin it goes.

[pnwmom]

167. True. But many of the babies/toddlers who have been helped

with trace minerals DO have chronic conditions, such as cerebral palsy. They're people, too.

[Ms. Toad]

135. You are extrapolating far beyond what the editorial says.

If you want to advance your case, and the case - more generally - for CAM, that isn't helpful.

The editorial is not the study itself - it draws general conclusions from the articles in the issue (and others). To draw more than very broad general conclusions you would need to read the underlying articles.

Generally, what the article says is that routine supplementation (i.e. supplementation on general principle when there is "no clear evidence of micronutrient deficiencies who represent most supplement users in the United States and other countries" does not prevent chronic disease or death.

The article is not talking about not aking folic acid during pregnancy. It is not talking about avoiding vitamin K supplements at birth. It is not talking about rejecting treatment with supplements where there is evidence of deficiencies (like Vitamin D in much of the U.S.). It is not talking about not using supplements to treat specific conditions caused by nutrient deficiencies (like using vitamin C to treat scurvy). It is not even talking about not using supplements to prevent acute conditions in circumstances where a diet is unlikely to contain the necessary nutrients.

You may well be on to something but when you flame an editorial (not even a study), by alleging it says things it doesn't say, it is far less likely that anyone will take you seriously.

[CreekDog]

93. I consider you an expert on losing credibility

[IdaBriggs]

96. Thank you, CreekDog.

You weren't any help before this post, and you aren't any help after this post, so I'll give the comment all the worry it is worth.

[tammywammy]

102. lol

[Th1onein]

103. Oh, Ida! Let me diagnose this as "woo," because it's "anecdotal."

People are sometimes absolute idiots about science. Everytime I hear someone poo-pooing anecdotal evidence, I want to pull my hair out. Don't they see the "evidence" part of anecdotal. YES, it's anecdotal, but it's STILL evidence.

[Matariki]

117. The problem is often that folks who think they are 'scientific' are anything but

I know lots of folks who work in the sciences and one trait they seem to share is innate curiosity. Not a blind belief, but the curiosity to look into things, which requires open mindedness. They don't make automatic knee-jerk dismissals of things they haven't looked in to. Which is what I'm seeing mostly in these so-called 'anti woo' threads. It makes me laugh that these folks delude themselves into thinking they're 'pro science'.

[Th1onein]

124. There are a group of people on here who are so pro-GMO.....

that anything anti-GMO is called "woo." I'm so tired of it. Our science has been usurped by big corporations, too. They are the ones who have the money to fund the studies into whether GMOs are harmful or not. What do you THINK these studies are going to come out with? Of COURSE they are going to provide "evidence" of the safety of GMOs! People just don't realize that science is not only the discussion section of the article, but that you have to look at the methodology, too. You can set up an experiment to "prove" any damn thing you want to prove and that's exactly what these big corporations do, banking on the public's ignorance that they'll buy into it, hook, line and sinker.

[Rex]

120. Well you have to think about the audience here on DU that reads this stuff.

Half of them pretend to be in lab coats when they reply. Yet, the underlying information about multi-vitamins is easy enough for a 3th grader to understand - we don't get all the nutrients we need daily, because in America we eat shitty fast food and have a tendency to avoid all greenery if we can.

Easy as pie, some here though are Dexter and know everything about everything as they talk down anecdotal evidence. Funny, they usually turn out to be the binary thinkers as well.

[Vox Moi]

108. Medicine is a big business and like a big business it tends to ossify

Recent, amazing discoveries in world of medical science:

- Babies feel pain
- A check-list in the OR, including the positive identification of the patient and the part to be operated on, helps avoid mistakes.
- Patients can self-administer anesthetic reliably (morphine pumps)
- Doctors need to wash their hands more often when moving from patient to patient.

Medicine is part art, part science and part myth. Medical training is demanding and you don't get good grades by taking time to question the material.

[renate]

109. I am oh so angry that you helped 121 babies with nutrition

I honestly do not understand the ugly virulence of the attacks you have received here. What you did was WONDERFUL and unselfish, and you did your best to get researchers interested in what could be an absolutely life-saving and life-altering treatment for thousands of babies every single year. Their inertia does not make your findings invalid.

Thank you.

[Orrex]

110. Nor does her passion validate her findings

She has made the claim that her findings will overturn fifty years of accepted scientific understanding, and several here have responded by asking for a more robust defense of those findings than she is able to provide. That's a reasonable and responsible attitude that hardly amounts to "ugly virulence."

Two dozen posts lamenting the recalcitrance of the establishment do not boost her credibility, nor does her lack of rigorous methodology.

Absolutely no one is arguing against helping babies, but it is not clear that her efforts, rather than some other factor, have helped them in the way that she describes. In fact, her experience amounts to anecdote and, while it may call for further investigation, it's far too early to make the definitive, world-changing claims that about her revolutionary course of treatment.

She may be correct, but at this point she has neither the formal training nor the objective experimental data to declare that she is correct.

[IdaBriggs]

114. Tell you what - how about I share my data with you?

I can give you raw data, and you can then evaluate it. I can also provide contact information for the families who participated who have *all* shared their commitment to getting this situation evaluated, and we can then get more objective data from their pediatricians, neurologists and therapists (which is where much of the data comes from, by the way).

I am *totally* willing to have an expert look at my data detail. WARNING: THERE IS A LOT OF IT.

To say "put up or shut up" would be rude, but why not take a look at it before dismissing it as fantasy?

At the end of the day, if we can get "further investigation" from this thread, I'll call it victory, and shut up.

Oh, and did I mention I've already shared it with some folks who do this type of investigation for a living? They keep being shocked at how much data we've collected....

Putting it together in a way that makes sense is the absolute challenge. I am really hating this part.

[Orrex]

119. You are welcome to send it, though I claim no expertise in assessing it.

Last edited Wed Dec 18, 2013, 12:25 AM - Edit history (1)

That's why I haven't asked that you submit it for my review, but rather that it be submitted for formal peer review. In short, even if I look at it and it seems reasonable to me, that doesn't amount to anything more significant than "Orrex sez it seems ok."

As I said, I don't doubt your good intentions, and I also don't suspect you of any hidden agenda. For that matter, my statement in a previous post that you lack sufficient training and expertise was not intended as an insult but rather as a statement of fact (as far as I can tell) that equally appliles to me.

[IdaBriggs]

113. Thank you. I can't ever forget the 41 it didn't help.

There is a reason I am not a doctor.

But I very much appreciate your support -

[phil89]

131. So

you felt comfortable playing with peoples' lives based on assumptions?

[Vashta Nerada]

111. Lookee here, NPR came out with an article about the dangers of vitamin supplements today:

http://www.npr.org/blogs/health/2013/12/17/251955878/the-case-against-multivitamins-grows-stronger

Evidence continues to mount that vitamin supplements don't help most people, and can actually cause diseases that people are taking them to prevent, like cancer.

Three studies published Monday add to multivitamins' bad rap. One review found no benefit in preventing early death, heart disease or cancer. Another found that taking multivitamins did nothing to stave off cognitive decline with aging. A third found that high-dose multivitamins didn't help people who had had one heart attack avoid another.

"Enough is enough," declares an editorial accompanying the studies in Annals of Internal Medicine. "Stop wasting money on vitamin and mineral supplements."

But enough is not enough for the American public. We spend $28 billion a year on vitamin supplements and are projected to spend more. About 40 percent of Americans take multivitamins, the editorial says.

[IdaBriggs]

115. Its a reference to the article I'm ranting about.

Thank you for sharing. Sigh.

[CreekDog]

118. Why are you consulting with veterinarians about child nutrition? Nobody here told you to do that.

Maybe you misunderstood folks here.

When you complained previously that doctors weren't listening to you and they said, "you don't need a doctor, you need a quack", that wasn't meant literally.

[CreekDog]

121. .

[NealK]

123. You do know that it's illegal to practice Medicine without a license, don't you?

Fields where practicing without a license may carry civil or criminal penalties include lawyer, physician, physician assistant, surgeon, coroner, medical examiner, paramedic, funeral director, osteopath, chiropractor, dentist, pharmacist etc
https://en.wikipedia.org/wiki/Practicing_without_a_license#Types

-Medicine:
States have differing definitions of what it means to practice medicine. Regardless, all states require medical professionals to obtain some kind of license before they can engage in their occupation. This includes doctors, dentists, nurses, veterinarians, and other healthcare workers. States typically define practicing medicine as any activity that is intended to cure disease or preserve health. However, this broad definition does not include activities such as selling vitamins, providing books on nutrition or healing, providing general advice, selling home remedies, or related activities. However, if someone diagnoses people, prescribes medication, or performs physical examinations, this is all activity covered by the unauthorized practice of medicine. Engaging in the practice of medicine without a license is often a felony offense.

http://www.criminaldefenselawyer.com/crime-penalties/federal/Practicing-without-license.htm

[CreekDog]

126. She's not. This is being overseen by an excellent Horse GP for the kid CP.

[Squinch]

133. I work with premature infants and disabled infants. This is amazing. Thank you for sharing it..

The condescending responses you are receiving are ridiculous. When a parent is in a situation like the ones you describe, anything that can't hurt and might help is worth trying.

[IdaBriggs]

139. Thank you, Squinch.

The NICU nurses helped keep me sane; bless them! Thank you for the work you do daily.

One of the things that worries people is that it is "too easy" - "once a day, I give them this?"

Yes. The babies can sometimes see results in as little as 72 hours (although not all, of course). One mom actually started yelling at me because it worked so fast! That was...interesting.

[blue neen]

134. Here's some interesting reading:

http://circ.ahajournals.org/content/111/19/e289.full

http://ghr.nlm.nih.gov/gene/MTHFR

I have one of these genetic conditions and am required to take a prescription vitamin with a special form
of folate along with B-6 and B-12 to help with absorption. Modern medicine is just on the cutting edge of genetic testing and many times insurance won't even pay to get the MTHFR testing done because it's "experimental". The prescription vitamin also is not covered by insurance because vitamins are available over the counter; however, this particular one is not.

You may be onto something with what has worked for your family, Ida. I don't really think it would be the right course for everyone; some people can be harmed by taking too many vitamins (there are also a number of genetic abnormalities concerning metabolism----google CYP2C9, CYP2C6, etc.).

IMHO, the genetic testing behind some of the inherited vitamin deficiencies should be covered. Why should we be relying on guesswork when there now IS science behind it?

It's all in the money. When Big Pharma figures out a way to make money off of it, Big Insurance will start to cover it. At that point, doctors can actually order the tests that ultimately will make treatment options better for their patients.

[tavalon]

140. Wow, as a NICU nurse who has an 18 year old with autism

I am both surprised and not at all surprised. I'm saddened that the medical establishment fights with every breath in their collective bodies that which didn't come from the pharmaceutical companies. I expect that 20 years from now, this will just be "common wisdom". So much for evidence based medicine, eh?.

As the parent of a kiddo with autism, I've seen how parents, myself included, had to do the research, and have made many amazing strides, including the power of mega supplements, and been told it's BS.

I'm surprised no one accused you of putting your children in danger. I'm really glad they didn't. And I'm sad for the thousands who could benefit from this discovery except for the fact that it was you and not SmithKline Beecham who came up with it. And they are too busy paying mega salaries to doctors who doctor studies to show exactly what they want to be shown.

My kiddo takes very small subq doses of B12 (which the medical community denies helps, but since he is more verbal while on them, I choose to ignore the medical community). My son has a hyperactive immune system and has sky high titers for the last vaccines he got when he left us, at 18 months of age. I'm called an anti-vaxxer, even though I know and tell anyone who will listen, that as long as a reasonable (not profit based) schedule is followed, most children can handle vaccines and vaccines have saved countless lives. But I'm an anti vaxxer, because my child is not up to date and never will be and because I have the temerity to say that vaccines didn't cause, but did contribute to locking my child in his mind for the rest of his life. Whoops, I've gone off the medical reservation.

I recommend the flu vaccine, but only if it doesn't contain thimerosal. Off the medical reservation again.

I hear you, Ida. It is so damn frustrating that the medical establishment is so seemingly willfully blind to so much.

Just like you, I study, and I make up my own damn mind. If I had waited on the medical establishment, my son would be far worse than he is.

[pnwmom]

166. Thanks, Ida! Do you still have a website about this? n/t

[IdaBriggs]

173. Yes, but it hasn't been updated for a while.

It is on my "list of things to do" right after I finish writing up the summary that no one will ever read about what happened when we do this project. Sigh. Yup, I am cynical!

www,preemiegrowthproject.com is where we put all of the information, and there is a "parent group" on Facebook that has some of the most amazing people on the planet participating. Some of them completely rock in the google warrior department, which is where the information about the dangers of miralax came from - the FDA says adults shouldn't use it for more than seven days because after that it "interferes with the lower intestines ability to absorb micronutrients" but it is regularly prescribed for this population (children!) FOR YEARS!



I get frustrated.

[pnwmom]

168. Here is a simple example of a chronic condition that many adults have

that can be fixed with a mineral: constipation.

Taking a magnesium supplement can make all the difference. Also, it is helpful, in conjunction with calcium, in preventing a certain type of kidney stone.

[DeSwiss]

185. Or they could stop eating those Big Macs©, eat more vegetables and save their hearts to boot.

The reason we have to take supplements in the form of magnesium (an explosive metal) and other vitamins and minerals, is because of our so-called ''advanced farming methods.'' We've substituted practices designed to naturally control pests and increase yields the result of which provided us with a full compliment of the basic human nutrients required to sustain life, in favor of methods focused almost exclusively upon production and profits. Profits made off of us.

So today, rather than to allow fields to remain fallow for a season, it's plowed under year after year. We've lost almost all our top soil as a result. Rather than switching crops so that you maintain a natural imbalance of forage vs. prey, which encourages the predators of your crop's pests to come to your aid to control the little boogers, we've add more metal-based and other volatile organic-based poisons to the mix, in the form of pesticides.

The result of these practices over the past five decades in particular, has been a use and concentration of fertilizers NPP: N = Nitrogen P = Phosphorous K = Potassium (potash). Those are the big three nutrients that are needed by all plant life to grow, and that's all they get from our current methods of farming.

The pesticides which are basically weakened versions of nerve gas, have been introduced into our diets with virtually no research as to negative impacts upon human health beyond those with a monetary incentive to minimize liability. The FDA being basically a useless appendage, stands mute openly allowing US citizens to be put into harm's way, every single day.

All those other trace minerals we used to have in our foods, have been lost overtime. Sent, with the flow of all things back to the sea, eventually down the Mississippi River to be deposited into the Gulf of Mexico where it creates a Dead Zone, where life cannot exist.

- This is the ''progress'' that we've accepted into our lives. And our health and longevity is the price we've paid for it......


[center][/center]

[IdaBriggs]

188. ^=== CHEERING!

Brilliantly stated! The babies are the canaries in our coal mine. Don't even get me started on the fact that the highest concentrations of infant mortality that we see happens in areas where we have "food desserts" - but everyone tries to pretend the problems aren't all related.

Thank you for this post!

[alarimer]

169. Try thinking critically for once.

This is peer-reviewed science, much more credible, than "It worked for me so it must be true."

There is simply no credible evidence that a daily vitamin does any good whatsoever. MOST people do not benefit from it. It is a waste of money at least.

[LWolf]

170. It was with trepidation that

I waded in, after reading your OP, to read responses.

I'm going to rec your OP. You are making a very important point, and you are somehow able to express your strong position without, like some, being an ass.

And then I'm just going to add that I am so, so tired of people pumping up their chests and condescending to others, as if some anonymous person on the internet is some kind of authority on ANYTHING. So I'll end with a generic response to some on the thread:

"Try being civil for once."

[IdaBriggs]

171. (blush)

This is one of the nicest compliments I have ever received on DU - NOT being an ass about my position.

Thank you. I am honored by both your kind words, and the rec. I will try to continue to be worthy of both.

[Le Taz Hot]

175. Every time I feel like I'm getting sick

with a cold or flu, I start "the regimen." Three echinecea tablets, 2 Vitamin C tablets and a couple Tylenol every 4 hours. It's not that you don't come down with the illness as it's already in your system (it's why you start not feeling good), but the duration and severity is cut down significantly. As long as I keep taking the Echinacea and Vitamin C, even after I start feeling better as, chances are, the thing that is making me sick is still there, it's just weakened. I can't tell you how many times that co-workers and I started coming down with the same thing at the same time. I started the regimen and would maybe miss one day. Other who just let it run it's course were often out for several days if not the whole week.

Dismiss anecdotal evidence all you want. People know what works best for them.

[OwnedByCats]

176. I can't believe some of the responses

They act like you recommended putting arsenic in baby formula or something!

There are a lot of things out there that the medical community ignores, this is just the tip of the iceberg.

I really hope you can get something off the ground to have this seriously looked at and studied by medical and science professionals.

I wish you luck!

[IdaBriggs]

198. Thank you.

I appreciate the kind words and support.

[Kurovski]

194. Great post, Ida. I'm happy to K&R.

Thinking for ourselves, doing our own research, and trusting our own experiences and our own bodies is as important as regular check-ups.



Thank you for this great counter-argument to all the...what shall we call it? "corporate woo"?