Does your doctor sell you supplements?

[Learner1]

Good in theory, and might be practical for simple issues (a clearly defined problem in a well-understood system) but I don't think it's practical for ME, where we don't understand what's going on and what all the interconnections are. For every success story, I expect there would be a large number of stories where the person does lots of testing, comes up with theories of how to fix the abnormalities...and doesn't get any improvement, because there are so many interactions that aren't covered by the theories. It's a matter of personal judgement as to how much effort is worthwhile to put into testing and theorizing. I've had more success with just trying various things, more or less at random, and paying attention to changes in my symptoms.

"ME" isn't some scary black box that can't be helped. Though I admit it's complex, I have gained a lot of function by testing genetics, metabolomics and other markers, and piecing together complex biochemistry, encouraging more favorable gene expression and improving metabolomics, using much of the research leading ME/CFS researchers have published.

Simplistic analysis and just trying stuff is like throwing darts and a dartboard turned around backwards and blindfolded.

What I saw was education on spotting misleading techniques for health claims.

What I notice missing from the list are commercial pharmaceuticals that lack proper clinical evidence for what they claim to do, and which techniques they use to mislead consumers. I'm sure that would cost them any funding from Big Pharma. I wonder if there's a site that provides that sort of education.

This is true. If Barrett and Quackwatch were done fabulous, why not go after pharmaceuticals that kill people or damage people and don't provide the benefits advertised or "sold" to the FDA to get them approved? Or surgical techniques that are unnecessary but profitable in the fee for service US medical system!

I also note that Quackwatch doesn't list supplements that also lack scientific evidence (omega-3 oils for heart health come to mind).

From the Journal if the American Heart Association:
https://www.ahajournals.org/doi/full/10.1161/circulationaha.114.015176

If Big Pharma was really controlling Quackwatch and using it to convince people to use prescription drugs instead, surely they'd convince (force) the site to list those supplements as 'questionable' if not 'outright quackery'. Supplements and herbal remedies should be costing Big Pharma a significant amount of potential income. No, if Quackwatch was a site of pure evil, I think it would look a lot different.

It's not just competition for dollars. It is turning doctors, medical systems, insurance companies, the FDA, etc. against treatments that are effective, cheaper in many cases, and are alternatives to what Big Pharma and conventional medicine offers.

These factors make patients have to pay out of pocket for many treatments that are effective, or worse, against the law, like dichloroacetate, for example, making them tragically out of reach for many.

 

[YippeeKi YOW !!]

This is true. If Barrett and Quackwatch were done fabulous, why not go after pharmaceuticals that kill people or damage people and don't provide the benefits advertised or "sold" to the FDA to get them approved?

I agree.

Here's just a very few examples of things that could have appeared in QuackWatch, fierce public protectors that they are, but of course, didn't:

• Vioxx, which killed thousands upon thousands of patients and injured unknown numbers of others before the FDA was finally literally forced almost at gun point (read thousands of wrongful death lawsuits) to remove it frm the market. I was one of the “lucky ones”, suffering only from extended severe and debilitating pain, but still here to tell the tale. In my case, and many others, it was prescribed as a chemo and post-chemo treatment for severe bone and joint pain.
  • Not even a squeak of outrage out of QuackWatch.
• CNN did a lengthy report a couple of years back on the number of drugs approved by the FDA, and later pulled from the market due to serious, and often deadly, ‘unexpected’ side effects, up to and including death. About a third of the drugs the FDA approved between 2001 and 2010 were involved in some kind of safety event after reaching the market.
  • But QuackWatch was busy hissing angrily at acupuncture and homeopathy.
• Darvocet/Darvon, which caused increased risk of stroke and heart attacks; Dexfenfluramine which was found to be Cardio-toxic; Cyclofenil, which was discovered to be hepatotoxic after it killed quite a few patients. All this, after full FDA ‘certified safe’ approval.
  • Crickets from QuackWatch ....
• Then there’s Baycol (Cerivastatin), by Bayer, recalled in 2001 and reportedly responsible for more than 100,000 deaths following full approval, and later slow, foot-dragging, reluctant removal, by the FDA. Litigation related damages topped the one-trillion dollar mark.
  • Nary a murmur from QuackWatch. Impressive.
• Bextra, similar to Vioxx and just as deadly, despite ‘careful vetting’ by the FDA. The concerns were similar: increased risk of heart attack and stroke, with the added bonus of a deadly, and often fatal, skin disease. One billion-plus in legal awards against Pfizer, and a fine of over a billion against UpJohn and another company.
  • Not a peep out of Quack ….
• Rezulin, removed only after the FDA attempted to delay the process in acceding to Warner-Lambert’s complaints about the removal, irrespective of how many diabetic patients suffered severe consequences from the drug-induced hepatitis it also conveyed as an added and unnoted benefit, and who also demanded, and got, the removal of the FDA doctor who first voiced concern over the drug.
  • Polite silence out of those bas.....tions of health protection, Quackwatch. Nice.
• Meridia, made by Abbott Laboratories and available from 1997-2010, a large-scale trial linked Meridia to non-fatal strokes and heart attacks, and Abbott agreed to take the medication off the American marketplace ....
  • QuackWatch must have been .... elsewhere. You know, with the saint from the TV series ....
• Phen-Fen was linked to both heart valve deformities and also primary pulmonary hypertension, according to research around 1997.
  • Lawsuits followed, but no mention in QuackWatch ….
• Pondimin left the market as well — though phentermine, the “phen” of Phen-Fen, has remained available. American Home Products in 1999 agreed to pay $3.75 billion to settle about 6,500 lawsuits affecting more than 11,000 people, according to a New York Times report.
  • Hmmmmmm … how many people have died of Vit C treatments?
• Losartan potassium/hydrochlorothiazide combination tablets manufactured by Macleods Pharmaceuticals Limited. These blood pressure meds are being recalled for several reasons, one of them being contamination with a carcinogenic, among possible others.
  • No danger flags raised in QuackWatch.
• And , of course, the opioid addiction scandals, unarguably caused by dishonest marketing and heavy pressure in the form of numerous rewards programs to prescribing physicians by the manufacturers, also supposed to be overseen by the FDA, who, like Lady Liberty, appears to be perpetually blindfolded.
  • Ditto QuackWatch ....
• Propulsid caused irregular heartbeats, sometimes fatal, particularly in children being treated for spitting up. In 2000, Janssen Labs announced they would stop advertising Propulsid and make it available only through a limited program for adults, children and infants who could show that they couldn’t tolerate other medications.
  • Not even a whimper out of QuackWatch
• Zelnorm was marketed to women with constipation and irritable bowel syndrome. Research suggested a possible link for Zelnorm users — some 500,000 Americans alone — with a “statistically significant” risk of developing strokes, heart attacks, or other heart issues, according to a CNN report. Today, the company still provides the medication for people who are otherwise facing life-threatening health issues without it.
  • Apparently on the theory that we're all gonna die of something, why not this? Not surprizingly, Quackwatch's silence on the issue suggests that they agree.

I could go on and on, but what's the point. I've learned not to keep beating on a brick wall hoping it'll turn into a door.

 

[Wayne]

I could go on and on, but what's the point. I've learned not to keep beating at a brick wall hoping it'll turn into a door.

@YippeeKi YOW !! -- I'll see if I can take the baton for a stretch...

How about the tens of thousands of HPV vaccinated kids (possibly more) who've been severely injured (many with ME/CFS symptoms) or killed (about 150 at last count) by the vaccine? The data is in: Japan "no longer recommends" it; Denmark and other countries have issued "advisories"; and yet it still continues to be slickly marketed to young girls (and parents) who they're able to actually get excited about getting "the latest" vaccine. So many families now in mourning, thinking, "if only I'd known".

How about the tens of thousands (possibly more) of people who've been severely injured (floxed) by a senseless class of antibiotics known as fluoroquinolones, which have also caused many ME/CFS type illnesses? And so many other devastating physical deterioration(s) as well.

How about the many, many drugs that are known to be ototoxic? They often cause hearing loss, and/or severe tinnitus, and/or extreme hyperacusis, and often render a person's life to one of almost perpetual torture, but are seldom told about that potential before they're prescribed. Sometimes "ringing of the ears" (interpret brain damage) is listed under "minor" side effects.

And not to leave out the tens of millions senselessly over-prescribed anti-anxiety and depression medications that have not been shown to be any more effective than placebo. It's only now after a few decades since they began to flood "the market" in the 1980's that's it's becoming increasingly clear how devastating these drugs are to normal brain and neurological function. When the point arrives where people can no longer tolerate these drugs, they often go through extended periods of tortorous withdrawal (years) to try to wean themselves off of these addictive substances.

I don't think it can be stressed enough that it's not unusual for drug companies to push for the approval of drugs that are "addictive", or very dangerous, even when their benefits are often minimal to nil. In all my peeks onto the Quackwatch website, I've never seen even a brief mention of any of these major, major problems that beset conventional (so-called scientific) medicine. -- "I could go on and on, but what's the point. I've learned not to keep beating at a brick wall hoping it'll turn into a door." -- Or wait a minute, have I really???

Oh BTW, I've never seen Stephen Barrett or Quackwatch compare the very high severe injury and death rates of conventional drugs and therapies to that of therapies and modalities used by all those "quack" alternative doctors, where severe injury or death are extremely rare. I guess it would be defeating their own purpose to practice that kind of transparency.

 

[YippeeKi YOW !!]

a senseless class of antibiotics known as fluoroquinolones, which have also caused many ME/CFS type illnesses?

DAMN !!! How could I have forgotten the flouroquinolones, cipros et al !!!! Damn .....

Or the HPV vaccines. I remember when they started promoting them in "news" pieces, mentioning that they were in trials, then that they were available. I got that old familiar " ..... no good can come of this ...." feeling.

And I've crabbed and bitched so often in these threads about the dangerous, mind altering, over-prescription of antianxiety meds and SSRIs and their various evil cousins that, for reasons beyond me, I didn't even think to include them here. Ifiot!!! Uh, Idiot. Maybe Ifiot too. Who knows anymore.....

I guess it would be defeating their own purpose to practice that kind of transparency.

... or any other ....

 

[JES]

Because they are working in pathways which are part of a complex system. One needs all of the co-factors to make a pathway work. If one all of a sudden adds a cofactor that's been missing, things may work well how awhile, up until one runs out of one of more cofactors in the same pathway and then the pathway will stop working. Then, even if that pathway works fine, it may feed one or more other pathways, which also have their co-factors. So, one must thoughtfully get the entire system with multiple pathways working.

I don't think missing cofactors is the most likely explanation in my case. I have experimented with countless supplements (and several drugs) that have very much unrelated modes of action. They all stop working in a too predictable fashion for it to really be about cofactors. My hypothesis regarding the supplements that work is that they serve as a jolt that temporarily toggles something in the dysregulated (or hypometabolic, whatever you want to call it) state that maintains ME/CFS. Cold and sleep deprivation work similarly, but much better as a temporary cure. Same story with going in and out of ketosis, works temporarily. If I lack certain metabolic cofactors, why is it that no supplement can produce the same relief in my symptoms as catching a cold? I'm happy to hear you improved, but that's all we can tell, it worked for you, for me and most others it didn't. Now what?

There is also a risk that you could get worse. If supplements were really effective at tweaking these pathways, what if you hit a wrong pathway with a supplement? Knowing how little "headroom" some ME/CFS patients have with any stressor making them sometimes permanently worse, a supplement that majorly tweaked a metabolic pathway could end up doing more damage. Thankfully this isn't my experience with supplements, all I ever got was mild transient effects as I previously described. I did have a bad reaction to certain drugs like valtrex, so in that sense I agree, supplements are probably safer, but I think part of the reason is because most supplements aren't very effective to begin with, so the risk of getting worse is also smaller.

 

[YippeeKi YOW !!]

supplements are probably safer, but I think part of the reason is because most supplements aren't very effective to begin with, so the risk of getting worse is also smaller.

I agree with much of what you said. Particularly the lower potential damage profile of supplements vs Rx meds.

I think part of that is that supplements (and I use the term loosely to cover a wide range of non-Rx healers and interveners) generally work much more slowly, not being custom-distilled little medical grenades, constructed for the biggest, fastest, bang for the buck.

So if a supplement disagrees with you or your particular expression of ME, that generally expresses in a milder form than, say, an atomic bomb like Valtrex, and in plenty of time to reverse out of it before the damage gets deeper and worse.

On the other hand, Valtrex is an absolute miracle at fighting what it was created to defeat, and I cant think of a single supp could do that as effectively, or as speedily, tho supps could probably work to clear up the debris after Valtrx has done its job.

I also think that supps, whether herbs, vitamins, or amino acids, work in more varied and subtle pathways and in more varied systems than lab-constructed-for-a-specific-purpose Rx's do.

And I've had some pretty spectacular and miserable responses to some of them. Theanine knocked me to my knees and deeper into the symptoms that I was trying to alleviate. Tyrosine did the same. So did 3 or 4 other things I tried, and a lot of things just did .....nothing. I almost stopped experimenting, but I was so desperate for improvement, ANY improvement, that I slogged on, and finally found something that got me probably a third or maybe even half-way (it depends on the day, some are better than others) to the finish line.

As far as not risking anything at all, most of us have been left to spin in the wind, and if we dont use ourselves as our own lab rats, there's no hope. I find hope a remarkable tonic. Maybe not a curative, but it keeps me going til I find one.

I hope that you find what works for you, @JES , I know you've been battling this slimy little sand-worm of an illness for a long time, as have I, and I know the price that exacts. I marvel at the members here who've been pushing thru for 15, 20, 30 years. What a testament to the stubborn durability of the human spirit !!!

Onward and upward, or sideways or whatever, just any which way but down

 

[pamojja]

I also note that Quackwatch doesn't list supplements that also lack scientific evidence (omega-3 oils for heart health come to mind). If Big Pharma was really controlling Quackwatch and using it to convince people to use prescription drugs instead, surely they'd convince (force) the site to list those supplements as 'questionable' if not 'outright quackery'.

Excuse me, but that particular argument about omega-3 oils is really funny. After all, pharma sells high dose prescription omega-3 fish oil: https://www.vascepa.com/ - why they should shoot in their own knee?


PS: Needless to say, beside being completely overpriced, this fish-oil is in a unhealthy form one should indeed warn from.

 

[YippeeKi YOW !!]

PS: Needless to say, beside being completely overpriced, this fish-oil is in a unhealthy form one should indeed warn from.

Most reasonably natural things are once they've been distilled down to what The Received Wisdom at BigPharm believes is their most active factor or factors .... they're in the business of making money. Health is beside the point, tho they don;t object if that is a side-effect.

 

[pamojja]

Most reasonably natural things are once they've been distilled down to what The Received Wisdom at BigPharm believes is their most active factor or factors .... they're in the business of making money. Health is beside the point, tho they don;t object if that is a side-effect.

It's rather they have to add something synthetic to a natural molecule, for being able to patent it and making it more profitable. Thereby opening the door to side-effects not heard of from natural forms.

 

[YippeeKi YOW !!]

It's rather they have to add something synthetic to a natural molecule, for being able to patent it and making it more profitable. Thereby opening the door to side-effects not heard of from natural forms.

You're probably right. I was witlessly thinking that all they had to do was slightly alter the chemical structure in order to be able to patent it as a new substance, but, yes, the easiest, cheapest, way to do that is to sandwich in something possibly entirely inappropriate and potentially damaging (I'm being kind here), so that's the road they'll take.

They did the same thing with tryptophan in converting it into an ENORMOUSLY expensive migraine treatment. Which of course was infinitely inferior to the action of the tryptophan itself, which two of my friends who suffered from really nasty migraines used to good, if not perfect effect. ANd they couldn;t go back to using tryprophan, because it had been pulled from the shelves of every-effing-where, on the thin excuse the several dozen people got ill, and I think 3 or 4 died due a a contaminat4d batch from a producer in Asia, who hadnt properly cleaned and prepped their equipment after repairs had been done that used caustic and other unfriendly-to-human-life substances.

The fact that that episode was a one-off meant nothing. The drug company knew that they needed time to put the finishing touches on their drug, then more time to buy its way thru the FDA, and even more time to deploy their army of short-skirtd attractive sales personnel, and hand out the requisite party favors to launch it onto an unsuspecting public.

Tryptophan stayed gone for some 20-plus years, I think. It may still be.

Odd. QuackWatch had nothing to say about that fiasco, either. Shocked, like, totally.

 

[pamojja]

It may still be.

It is finally available again. For example https://www.lifeextension.com/vitamins-supplements/item01722/l-tryptophan

 

[Learner1]

However, taking l-tryptophan or 6-HTP can trigger the IDO2 trap Dr..Phair found.

@JES I heard nothing about testing or any kind of data driven process in your choice of supplements.

Supplements can have subtle effects, especially when used on processes dependent upon other processes or with s number of cofactors, but they can have pretty direct or fairly immediate impact. Some that I've felt a positive effect within 5-20 minutes of taking are:

• NAD+ or NMN, taken to promote ATP
• Curcumin, taken for inflammation
• Boswellia, taken for brain inflammation
• 5-MTHF
• Tyrosine, taken to promote dopamine

And as @pamojja says, sometimes effective supplements are patented and made into pharmaceuticals, like fish oil, potassium citrate, Deplin, Aminosyn, or Kuvan, which used to be a cheap supplement, but now had been made into an orphan drug for children with PKU, even though many other patients could benefit.

 

[Wishful]

My hypothesis regarding the supplements that work is that they serve as a jolt that temporarily toggles something in the dysregulated (or hypometabolic, whatever you want to call it) state that maintains ME/CFS.

Some supplements and herbal remedies do seem to work that way, as do some drugs. Several things gave me temporary full remission, just like flipping a switch. T2 seemed to 'reset' something: one dose pushed the chemical reset button, and then the timer would tick over for 21 days, and then my symptoms would get worse again. I assume that the T2 boost created a bunch of something via RNA transcription, which then had a lifetime of 21 days. It seemed dose-independent.

Other supplements and other treatments work differently. For a while, I needed extra carnitine with meals with high fat content. If someone has problems absorbing a certain nutrient, a supplement might help. In other cases, boosting the blood level of a chemical might influence some other cellular function as a cofactor. There are many ways that supplements and other treatments can affect ME.

 

[Wishful]

If Barrett and Quackwatch were done fabulous, why not go after pharmaceuticals that kill people or damage people and don't provide the benefits advertised or "sold" to the FDA to get them approved?

From their mission statement: "Their primary focus is on quackery-related information that is difficult or impossible to get elsewhere." Is information on pharmaceuticals, particularly actual effectiveness and chance of side-effects, difficult or impossible to get elsewhere? Pharmaceuticals (and some other conventional treatments) should be part of their mission statement:

• Investigating questionable claims
• Improving the quality of health information on the Internet
• Attacking misleading advertising on the Internet

I can understand why they don't. Aside from the loss of funding, the legal bills would probably be enormous, and the site would probably be continually fighting legal shutdown orders (shut down while it drags through courts as slowly as possible). I admit I would like to see something on the site explaining that many conventional treatments should be considered dangerous quackery, but that they've chosen to limit their site to unconventional medicine for certain reasons. It's not dishonest to limit one's targets if you're open about those limits.

 

[Wayne]

DAMN !!! How could I have forgotten the flouroquinolones, cipros et al !!!! Damn ..... Or the HPV vaccines.,,

Don't be too hard on yourself @YippeeKi YOW !!, there's just too danged much to keep track of!

It's not dishonest to limit one's targets if you're open about those limits.

But it is disingenuous to try to warp people's perspectives on potential health care choices as they go about trying to find the best health care available to them. -- It reminds me of the first time I bought automobile insurance. I went to an agency that my parents had used, and thought they'd treat me right. When I saw the premium they quoted me, I about dropped out of my chair. I then asked, something like, "Now, you're an agency, and don't you represent more than one insurance company?" He nodded his head yes (without moving).

So I ask him if he could give me some quotes from some of those other companies. He moves. And lo and behold, he was able to come up with quotes that were less than half of his original quote; and none were as expensive as his original quote. Now, you don't suppose he was just trying to make himself a little more commission by showing me that ultra expensive product first, do you?

It's the same with conventional health care. As I see it, they assume--that you're going to assume--that what they have to offer is the safest, most effective, and economical route to go. But that isn't part of their business model. Instead, they usually offer you choices that are the most profitable for them. Even when the country is facing an economic and health care crisis, they relentlessly try to shut down any notion that relatively simple and inexpensive therapies could in any way be effective against the coronavirus, no matter how much evidence to the contrary.

 

[Learner1]

Don't be too hard on yourself @YippeeKi YOW !!, there's just too danged much to keep track of!




But it is disingenuous to try to warp people's perspectives on potential health care choices as they go about trying to find the best health care available to them. -- It reminds me of the first time I bought automobile insurance. I went to an agency that my parents had used, and thought they'd treat me right. When I saw the premium they quoted me, I about dropped out of my chair. I then asked, something like, "Now, you're an agency, and don't you represent more than one insurance company?" He nodded his head yes (without moving).

So I ask him if he could give me some quotes from some of those other companies. He moves. And lo and behold, he was able to come up with quotes that were less than half of his original quote; and none were as expensive as his original quote. Now, you don't suppose he was just trying to make himself a little more commission by showing me that ultra expensive product first, do you?

It's the same with conventional health care. As I see it, they assume--that you're going to assume--that what they have to offer is the safest, most effective, and economical route to go. But that isn't part of their business model. Instead, they usually offer you choices that are the most profitable for them. Even when the country is facing an economic and health care crisis, they relentlessly try to shut down any notion that relatively simple and inexpensive therapies could in any way be effective against the coronavirus, no matter how much evidence to the contrary.

Well said, @Wayne !

Guess I'm wondering if you're still sick @Wishful Sounds like there are a lot of useful treatments you've been talked out of that have helped some of your fellow patients. Hope you reconsider.

 

[YippeeKi YOW !!]

@Learner1 , @Wayne
Totally, completely, absolutely agree .... it's beyond disingenuous to attack 'alternative' medicine while leaving the impression, by its exclusion, that conventional allopathic medicine is pristine, unassailable, and without risks, dangers, and disingenuous , misleading, and often dangerous-to-your-health marketing practices.

 

[Wishful]

Sounds like there are a lot of useful treatments you've been talked out of that have helped some of your fellow patients.

I had been thinking about a list of drugs someone else posted yesterday. Some were hard to get prescriptions for; many had dangerous side-effects; and none of them convinced me that they had much chance of helping. It occurred to me that on a list of things to try, they'd be well below a bag of mixed gourmet jellybeans in terms of likelihood of helping and expense/hassle/danger of trying.

As for a lot of other alternative treatments, it's not that I've been talked out of trying them, it's that nothing has talked me into them, meaning that the basis for them doesn't convince me that they're worth bothering to try. The leaves and berries I tried had about the same chance of effectiveness (approaching zero), but at least all it cost me was bending down to pick some.

 

[Davsey27]

Yes. I believe that some of the new age doctors that promote holistic medicine are scamming people.One med student who was shadowing the doctor asked me what if you just push through the malaise? Multivitamins were
recommended at the front counter.Not saying multivitamins are not helpful but it just seemed like they were interested in selling stuff that could be purchased elsewhere cheaper. In the age of Doctors interested in Twitter and running thyroid and CBC panels to test for fatigue i don't believe alot of them are credible for this type of condition. I think a good doctor would apply western medicine when necessary and alternative medicine when necessary instead of it being either or.

 

[YippeeKi YOW !!]

I think a good doctor would apply western medicine when necessary and alternative medicine when necessary instead of it being either or.

Totally agree. That would be ideal, and makes much better sense than the sort of " ...my way or the highway ..." approach that so much of Western medicine prefers to take.

But we rarely get 'ideal' in this best of all possible worlds, which is why I'm so grateful for google and NIH research .... and these threads, some so laden with science-y knowledge that you can practically earn a research degree just reading them ....