Being Goldilocks - too much, too little, and "just right"

[Mary]

Right, many issues here are about choices and priorities. Do you want to be a body-builder? Then you need to activate mTOR. You want longevity? Inhibit mTOR.

Choline seems great for memory, but terrible for mood. Inositol and glycine helps me get good sleep, but also gives me terrible brain fog and grogginess. Coffee gives me energy and focus, but also jitteriness, aso, aso.

You can't have your cake and eat it, too.

Adreno - I think it's quite possible that the inositol and glycine are causing a detox reaction, hence the brain fog and grogginess. I say this because they did that to me. Glycine is very useful for sleep but the first time I took a tablespoon of gelatin at night (it has a high glycine content), I was in lala land the next day. I got lost going to my sister's house, I felt drugged, etc. And then read up on gelatin and glycine and found detoxing - bingo! Inositol did the same thing to me - helped with sleep but horrible woozy hangover feeling, and I believe it's mercury detoxing which causes that. Inositol again causes detoxing.

Muscle testing shows that mercury is a big issue for me and I have a horrible time trying to detox it. I'm currently working with my chiropractor who has given me a homeopathc mercury detox remedy which I am trying in a very low dose. I've also started taking Cholacol II by Standard Process to help mop up toxins. Mercury detoxing is a work in progress for me. I tried Andy Cutler's protocol for a few months, made little progress but a lot of work. So now am trying this. I also read recently that leucine can help bind to mercury to get it out so have ordered some BCAAs, which a doctor told me 4 or 5 years ago that I needed.

Anyways, I highly recommend chiropractors who do muscle testing - they have helped me so much when the doctors have been essentially useless. You can check the yellow pages and call them, or look at the Standard Process website which has a search feature for practitioners who use their products. Good luck!

Mary

 

[Revel]

I do find the title of this thread a little 'over the top' - eyecatching in a newspaper headline kind of way.

As has already been said, too much or too little of many things can have grave consequences, including water!

I never take anything without researching it thoroughly. You must become your own health advocate and do your 'due diligence', whether it be supplements, herbs or prescribed medication.

The supplement and herb market is a lucrative business and learning to sift fact from the sales pitch is an acquired skill. The longer I've been ill, the easier it's become.

Last month I refused a licensed drug suggested by my POTS specialist. He huffed and puffed for a few minutes, but because I was pre-armed with knowledge he did not expect, he accepted my reasoning and we took another route.

Be safe and do your homework.

 

[Dr. Frost]

There is a very good chance that this forum saved my life.

When I found PR, my CNS symtoms were terrible. It was very dangerous for me to be living alone (I kept setting fire to the kitchen, leaving doors unlocked, etc.) but I was far to sick to make arrangements to not live alone. I couldn't even brush my teeth and floss on the same day -- i had to alternate days.

You could have taken the words out of my own mouth. This is exactly what I experienced too - in every detail, from setting fire to the kitchen, to being unable to floss AND brush. I, too, had an amazing recovery from the brink of death...and it was not due to conventional medicine that I discovered where to look for the answer.

In fact, I believe it may have been on this very forum (or something similar to this) where I finally had the "flash" that sent me scurrying back to the textbooks and PubMed articles.

So it isn't really a debate about "conventional medicine", in my opinion. In fact, for methylation issues, it is quite clear that conventional medicine is on your side - there are an absolutely enormous amount of studies and literature out there supporting it. All of the various effects of vitamin B deficiency, and genetic polymorphisms which cause it, are well-established in medical literature. We know that these polymorphisms exist, and we know that they can cause a dizzying array of problems. This is not in doubt.

The problem until recently has been that there's been very few ways to detect non-critical malfunctions in the general population. Genome sequencing has simply not been available to the general public before around 2010. Medicine has been able to detect the critical issues - such as pyridoxine-related childhood epilepsy, pellagra or spina bifida - because the effects are pretty obvious. It's easy to infer a deficiency when someone's seizing in front of you. However when the effects are more subtle, doctors tend to miss the mark.

Even I had missed it. I knew that many of my symptoms were often caused by B-vitamin deficiency. But I'm a 30-something male in otherwise-good health, with a varied, nutritious diet. I had taken a multivitamin and a B-vitamin complex since I was a teenager. There was no epilepsy in my family (mind you, in retrospect there WAS everything else). So why should I infer my condition was caused by a B-deficiency, something we only tend to notice in the aged? There was no clear pointer.

And this is what your average doctor would think, too. Remember that doctors have to work under the laws of statistical probability. Sadly, it's been my experience that doctors tend to be only any good if you "fit the bell curve". If you have a set of symptoms that are in line with what many people suffer for a known illness, you're likely to be diagnosed. If you have a rare genetic condition, rare reaction, and so on; prepare to be misdiagnosed. In these cases doctors will tend to treat the symptoms (e.g. depression, asthma, cardiovascular issues) and not recognize the actual root cause.

And so: my pneumologist diagnosed asthma and gave me a puffer. My dermatologist saw eczema and vitiligo and gave me a cream. My endocrinologist saw anemia and shrugged. My neurologist saw neuralgia and said tennis elbow. My GP saw joint problems and carpal tunnel, and gave me a physiotherapist. My other GP saw sinusitis and gave me antibiotics. My psychologist saw lack of energy and depression and diagnosed burnout. My psychiatrist diagnosed PTSD and gave mer TMS and and SSRIs. And so on. And yet all of these had a common cause; and all of the different doctors missed it. And... all of the problems mentioned here improved or even resolved once the root cause had been addressed. How could they have missed it? Well, they were too focused on the details. None of them communicated with each other; all of them, like me, wouldn't have even thought to send me for a genome sequencing. Thank god for my own curiosity, and for 23andMe...

It's not their fault; we see this in alternative medicine too. "Detox" diets that may work for some simply because they're restricting thiols or folate. "Anti-vaccinators" who believe vaccines caused their illness - when in fact it might really be due to a weak body that could not produce the proper immune reaction without "breaking". People who take slippery elm for their IBS, which kind of works because the reduced inflammation (or another unrelated pathway) reduces inflammation just that tiny bit needed to let them absorb a BIT more B12, or downregulate CBS due to less oxidative stress, causing them to restabilize...

In other words, it's not just the doctors that have been swinging wild. It's the naturopaths as well.

The MTHFR issue is exciting because it's one of the first times I know of where a piece of hard science can explain a huge number of "whys"... from disease variability, to why some therapies appeared to work in some people and not others. It's incredibly exciting science, and until a few years ago the technology was not available to the public. We stand on the crest of a revolution.

However, like the beginning of many things... there's a lot of education to be done. And there's a lot of dogma to shake off.

The problem is not naturopaths; nor is it medicine. It's a lack of education, and a propensity to go off half-cocked. I agree that forums such as this are amazing, in that they "crowd-source" both theory and experimental results. Many of us are basically acting as lab rats here. This is helping us and accelerating the evolution of this science. But if we're not careful to encourage people to dig deeply and treat cautiously, a lot of snake oil is going to make its way into this, and a lot of people are going to get hurt in the process of refining the cure. Prudence is needed.

 

[Dr. Frost]

FYI, I've changed the title as some people have found it inflammatory. I apologise if that was the case. The title was meant to pique interest, not to enrage.

It should be news to nobody that too much of a vitamin or a supplement can be toxic, and so it never occurred to me that this common-sense principle could cause annoyance. But then I guess it was my first post and it could have been seen as someone stomping in and setting up a soapbox. I apologise again for any offense it may have inadvertently caused; I hope the new title is more satisfactory.

I hope to make my "intro" post shortly; I've been tied up today reading the many great comments in this thread and the board. I feel honoured to be a part of such a vibrant community, and I hope to reassure you all that I'm here to collaborate - not to cause chaos.

 

[adreno]

Adreno - I think it's quite possible that the inositol and glycine are causing a detox reaction, hence the brain fog and grogginess. I say this because they did that to me. Glycine is very useful for sleep but the first time I took a tablespoon of gelatin at night (it has a high glycine content), I was in lala land the next day. I got lost going to my sister's house, I felt drugged, etc. And then read up on gelatin and glycine and found detoxing - bingo! Inositol did the same thing to me - helped with sleep but horrible woozy hangover feeling, and I believe it's mercury detoxing which causes that. Inositol again causes detoxing.

Muscle testing shows that mercury is a big issue for me and I have a horrible time trying to detox it. I'm currently working with my chiropractor who has given me a homeopathc mercury detox remedy which I am trying in a very low dose. I've also started taking Cholacol II by Standard Process to help mop up toxins. Mercury detoxing is a work in progress for me. I tried Andy Cutler's protocol for a few months, made little progress but a lot of work. So now am trying this. I also read recently that leucine can help bind to mercury to get it out so have ordered some BCAAs, which a doctor told me 4 or 5 years ago that I needed.

Anyways, I highly recommend chiropractors who do muscle testing - they have helped me so much when the doctors have been essentially useless. You can check the yellow pages and call them, or look at the Standard Process website which has a search feature for practitioners who use their products. Good luck!

Mary

Er...no and no. Sorry. Glycine is an inhibitory neurotransmitter in the CNS. And there is no such thing as "muscle testing". That is just pure fantasy.

 

[Dr. Frost]

One thing I do take issue with is the word "homeopathic". To me, this is a prime example of how snake-oil has slipped into science-based treatment.

Homeopathic remedies are not useless. They are sometimes a little better than useless. They are often worse than useless, because people turn to them instead of something which actually works.

You do know what homeopathy is about, right? It was dreamed up before we knew about bacteria and viruses. People thought that water had a "memory" effect. Homeopathy is simply the practise of putting some of the poison in water (in your case, mercury) and then distilling it out over and over again until not one atom of that poison is left. In other words; they're selling you nothing.

The idea is that water's "memory" magically tells your body how to fight the poison. Why water would be so specific is not explained... why would it be teaching me to resist mercury, and not resist (say) clouds, or glass beakers, or the squirrel's kidney it was previously in? Homeopathy is mute on that obvious flaw in the logic.

By the standards of homeopathy, drinking a cup of water from an average lake should confer me immunity to pretty much everything in nature. And yet, it doesn't.

The whole thing is made even more laughable when you see the array of homeopathic pills on sale. That's right: not only did they have distilled water, they're now selling you a dry pill with all the water evaporated from it. Since homeopathy itself is based around the "memory" theory of water, how could a dry pill possibly be of any benefit? It defies even its own weird logic.

The effect of homeopathy is therefore the effect of placebo. And indeed, many many large-scale studies have found its impacts to be precisely on par with placebo.

While placebo might be helpful for some ailments, there is no way that placebo is going to help you excrete mercury. You are literally wasting your money there. And the person who is prescribing it to you, by definition, has absolutely no idea of either medicine or science. You should not be trusting anyone who peddles homeopathy with your health.

The only reason that homeopathic remedies are even permitted to be sold, is because of a dirty deal that was done over a century ago - when medical regulations were being brought in, and where the "bacterial theory of disease" was still in competition with quack cures like radiation therapy and electrical shock cures.

I am all for new therapies, but it must be science-based. There must be solid evidence of effect, backed by a plausible mechanism that fits current, proven science. Homeopathy has neither of these things.

And here we have the exact problem of my original post: that manu people are choosing treatment options based not on research and proof, but on a recommendation or website or the fact that the physician is hunky and has a nice speaking voice. These factors have nothing to do with evidence, and everything to do with ignorance. Education is the key, and where education is lacking, prudence should reign.

The fact that homeopathy is still peddled as any kind of cure is a travesty; it is fraud and nothing but fraud. If I sold you water as medicine under any other name, I'd be arrested.

References:

1. http://www.iflscience.com/health-and-medicine/meta-study-confirms-homeopathy-doesnt-work
2. http://rationalwiki.org/wiki/Evidence_for_the_effectiveness_of_homeopathy
3. http://en.wikipedia.org/wiki/Homeopathy
4. http://news.discovery.com/human/health/uk-government-study-homeopathy-worthless.htm
5. http://www.csicop.org/si/show/homeopathy_a_critique_of_current_clinical_research/

 

[Gingergrrl]

@Dr. Frost I know you haven't had a chance to post your intro thread but I was curious what type of doctor you are? It helps me to know the context of who I am talking to if you are comfortable sharing.

 

[Ema]

One thing I do take issue with is the word "homeopathic". To me, this is a prime example of how snake-oil has slipped into science-based treatment.

Homeopathic remedies are not useless. They are sometimes a little better than useless. They are often worse than useless, because people turn to them instead of something which actually works.


The effect of homeopathy is therefore the effect of placebo. And indeed, many many large-scale studies have found its impacts to be precisely on par with placebo.


The only reason that homeopathic remedies are even permitted to be sold, is because of a dirty deal that was done

I am all for new therapies, but it must be science-based. There must be solid evidence of effect, backed by a plausible mechanism that fits current, proven science. Homeopathy has neither of these things.

The fact that homeopathy is still peddled as any kind of cure is a travesty; it is fraud and nothing but fraud. If I sold you water as medicine under any other name, I'd be arrested.

The statements above also could be applied to antidepressants...one of the pharmaceutical industry's biggest moneymakers. These drugs have also caused immeasurable harm to me and to many others.

http://www.scientificamerican.com/article/antidepressants-do-they-work-or-dont-they/

This is something that homeopathy has never done because the worst thing that happens is it doesn't do anything and you have wasted a few dollars.

Evidence/science based medicine would be one thing if it was actually working...instead we are sicker than ever and insurance companies use these so-called standards to deny any sort of "experimental" care. It's an unworkable system that is beyond defense yet the proponents are the first in line to scream about quackery.

Science allows for exploration and not knowing. As it should do. It's part of the process.

WHY EVIDENCE-BASED MEDICINE ONLY SEEMS SIMPLE:
The evidence isn’t always stellar // Guidelines don’t account for patient differences // Experts often disagree about the facts.

http://protomag.ticsnetwork.com/statics/MGH_SP10_Evidence_F5.pdf

 

[Dr. Frost]

The statements above also could be applied to antidepressants...one of the pharmaceutical industry's biggest moneymakers. These drugs have also caused immeasurable harm to me and to many others. .

I kind of agree about antidepressants, and kind of disagree.

It is true that SSRIs are not effective in up to 40% of cases, and are not a "cure" in many others. But science is very clear that they shouldn't be. Depression doesn't have a single etiology, so how can you expect it to have a single cure?

And indeed, why SSRIs worked even in the 60% of responders, was a bit of a mystery. One thing any neurobiologist knows is that 5HT receptors will downregulate in response to increased seratonin levels. This is partly behind the "down" after MDMA usage, for example, but also of great relevance in things like MAO-A downregulation (the "warrior gene") behaviours.

One thing that was discovered years after the fact, was that in fact SSRIs often work by an indirect mechanism: neurogenesis. They stimulate NGF and BDNF, two growth factors responsible for neural repair. So the theory goes that one of the many etiologies of depression is, in fact, neural damage.

This fits with other mechanisms which have been shown to help depression. NMDA inhibitors, such as memantine and (famously) ketamine, have been shown to impact depression in cases where SSRIs have been of no benefit. Memantine prevents calcium-channel excitotoxicity, and ketamine also stimulates BNDF. So do more esoteric things such as ibogaine. The NMDA mechanism is also behind the retrieval and storage of memories, which is why these NMDA-inhibiting drugs tend to have strong effect on addictive behaviours and drug addiction as well as things like PTSD. Other drugs which have little NMDA activity but are neurogenic, such as low-dose psilocybin, are also heavily implicated in fear-extinction in trauma and treatment of PTSD (as, in fact, is MDMA).

The reason why methylation issues - and B6 and B12 deficiencies - are well-known to cause depression is a function of neural health, as well. Not only is there epigenetic regulation involved; these vitamins (and cofactor minerals such as magnesium) are directly responsible for both preventing excitotoxicity and in cell wall permeability and creation of myelin sheathing.

Many endocrine dysfunction and neurological decay issues (such as homocystenuria, or Alzheimer's) have depression as a primary symptom. Again, this ties back into neural health, which again ties back into BDNF expression and modulation of excitotoxicity.

And interestingly, depression and memory loss are a recurring, standard set of symptoms you see across the board for any kind of neural damage: vitamin deficiency (eg. pellagra), Alzheimer's, Parkinsonism, traumatic brain injury, drug-induced injury, genetic or epigenetic abnormality, and PTSD. This is something I originally learned last year, when I was participating in research with the McGill University neurology department.

Electroshock therapy (and its great grandchild, rTMS) has been known for many years to positively impact treatment-resistant depression. It is also known to be temporary, requiring re-treatment. Why? Well, again, this ties back into neural health. The stimulation of flagging neural pathways may revive them, but if there is an underlying degenerative factor you will expect to see reoccurence in those patients that have one. And indeed, this is exactly what you DO see.

And the causes of the neural stress? Well, it can be anything - from drug addiction, to chronic environmental stress, or genetics, or pollutants, or disease, or deficiency of vitamins. Hence the spectacular spectrum of depressional causes... all of which seem to improve once neural health is assisted.

So in fact there are very plausible, established reason why SSRIs work for some people and not others. These reasons are experimentally backed by many studies which are not just in pharmaceuticals, but range from studies into trauma right down to established neurobiology and endrocrinology.

This has nothing to do with "Big Pharma". In fact, almost all the treatments I've listed above are not pharmaceutical cures; nor supported by Pharma. In fact, rTMS is opposed strongly by pharmaceutical giants; as is ibogaine; and several of the other items are illicit drugs.

Homeopathy on the other hand has neither a supportable theory, or multiple streams of disparate evidence pointing to a common cause. All it has are people in white coats with nice speaking voices assuring you that this bottle of water (which they're making profit from) is "going to work". I find it intensely ironic that the same people who accuse Big Pharma of profiteering, happily pay money to people who are every bit as profit-centric as the pharmaceutical companies they hate.

And while it causes you to "waste a few dollars", it also prevents those dollars going to support things that could be more useful - your own healthcare, or a treatment or test that could reveal a root cause. Worse, it could result in people delaying or stopping seeking tests or treatment for things such as vitamin deficiencies or genetic polymorphisms, under the impression that they are being "treated" by a homeopathic medicine.

References:

1. http://www.psychiatrictimes.com/articles/ketamine-and-nmda-receptor-antagonists-depression
2. http://www.ncbi.nlm.nih.gov/pubmed/17430148
3. http://news.yale.edu/2012/10/04/yal...w-ketamine-vanquishes-depression-within-hours
4. http://www.ncbi.nlm.nih.gov/pubmed/9668680
5. http://psychcentral.com/news/2013/0...rove-cognition-in-bipolar-disorder/56388.html
6. http://www.ncbi.nlm.nih.gov/pubmed/12071509
7. http://www.ncbi.nlm.nih.gov/pubmed/24655651
8. http://www.ncbi.nlm.nih.gov/pubmed/23727882
9. http://neurospeculation.blogspot.ca/2008/08/different-mechanisms-behind.html
10. http://www.scientificamerican.com/article/unraveling-the-mystery-of-ssris-depression/
11. http://scienceline.org/2013/01/shiny-happy-neurons/
12. http://www.nhs.uk/news/2014/08August/Pages/Depression-common-in-early-Parkinsons.aspx
13. https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?emotions-depression
14. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3137939/
15. http://onlinelibrary.wiley.com/doi/10.1111/j.1432-1033.1969.tb19645.x/pdf
16. http://www.ncbi.nlm.nih.gov/pubmed/19388520
17. http://brainblogger.com/2014/07/30/vitamin-b12-deficiency-and-its-neurological-consequences/
18. http://www.hindawi.com/journals/omcl/2013/230797
19. http://www.ncbi.nlm.nih.gov/pubmed/23201587

 

[Misfit Toy]

I have to agree with Heapsreal. I have also tried many medicines that have been just as intolerable. I was put on a med to get me off of a med. They put me on Zyprexa, an antipsychotic for sleep because Elavil had put me into a state of mania. I am not bipolar. Anyway, coming of of Elavil, I stopped sleeping. Zyprexa put me into a coma and when I tried going off of it, I went into withdraw and had to go live with someone because I couldn't be alone.

No doc acknowledged that this could happen even though it's all over the internet how dangerous this neuroleptic is. Neuroleptics mess me up but good.

IT took me a solid year for my brain to work right after coming off of that because the drug stopped either dopamine or serotonin. I was whacky (in my mind) and became a hermit....because I felt such fear until a year later when it leveled out.

I also gained 13 pounds on it in 4 months and I was on it for 7 months. Drugs are just as harmful.

What I don't like on here and on many sites is people saying you should push through with a med. I've seen it with the antivirals on here. Just because it worked for you doesn't mean it will work for others and it's almost like you aren't liked anymore because it didn't work for you. I have seen this play out on here with a few different people that are stuck like a broken record on what worked for them. They seriously think that it will work for everyone, but everyone's makeup is different and what may be magic for one, can be toxic for another.

I also don't understand the unnecessary passion that people have about things...if it worked for you, and it didn't work for me...what does that say about me as a person, that I suck?? What a way to measure another human being.

If it didn't work for you, or you didn't feel like pushing through with it, I could care less. I hope you are okay, but I am going to go back to my life now and I am still going to like you as a fellow human being.

I am extremely sensitive to meds. Some can take everything. I can't. I've had private emails, not recently, but in the past come my way telling me that I need to continue with an awful side effect because it will subside. When I continued and got sicker and discontinued, I stopped hearing from someone. It was as if I gave up to this person and this person had no desire to deal with me anymore. That is extremely hurtful. All over a medicine, which my doctor ordered me off of. I was told that my fear of the medicine was causing me to make it not work, by a fellow CFS patient.

Unless you've met me, talked to me on the phone, know me, seen my ways and movements and how I work, don't ever make such an assumption. Ever.

 

[Dr. Frost]

I have to agree with Heapsreal. I have also tried many medicines that have been just as intolerable. I was put on a med to get me off of a med. They put me on Zyprexa, an antipsychotic for sleep because Elavil had put me into a state of mania. I am not bipolar. Anyway, coming of of Elavil, I stopped sleeping. Zyprexa put me into a coma and when I tried going off of it, I went into withdraw and had to go live with someone because I couldn't be alone..

OK, so I see you trying a bunch of medications. That's all well and good - but what I see, is you trying to address a bunch of symptoms. I don't see a root cause either theorized or treated in your list.

So: you know what didn't work. You know (I assume) what works for you. Now, here's the 64 million dollar question - why? Can you find a root cause that explains all of the observed evidence?

I'm assuming that the reason you were on these medications was mood disturbance. I'm familiar with Zyprexa myself, and I agree, it's a terrible thing to be on - especially if you don't have to be. But here's the problem: if you don't know what you're treating, how can a drug possibly treat it except by random chance?

Remember that at this point, you'll tend to fall victim to the law of averages. A doctor will know that for people with this set of symptoms, Zyprexa often works. But that may be because most people don't have your particular illness/metabolic disturbance/genetic mutation. If you're not like "normal people", don't expect a cure that works on "normal people" to work for you.

So: you should try and dig deeper.

Depression can be caused by many factors, as I noted above. Neural stress (and its many causes) are one. Catecholamine disturbances are another. There's a huge list of possibilities, but it's relatively straightforward to move down the list. Every failed result will, at least, tell you what it's not, and narrow the possibilities. This is how I achieved my own turnaround, and came to fully understand not only what had ailed me all my life, but what killed both my grandparents,drove my brother insane - and is killing my parents. The discovery was worth it. But it does require you try and come to grips with the mechanisms that make you tick.

 

[Misfit Toy]

Dr. Frost, can you stop a snow storm? Can you make lightning stop from hitting? Why do we think as human beings that the world has to make sense or that we are going to know everything?

I am not antagonizing you or patronizing you...I am being factual. I was thinking this earlier. Why does everyone always wonder why there isn't a cure? IS there a cure for many diseases??? Cancer still doesn't have one.

What I notice is that everyone thinks that there is control over things. Is there? Why do hurricane's occur? Why can't we stop them?

Who knows. I have Sjogrens, CFS, CVID, hashimoto's, Endo, IC, Celiac, Fibro,.....and it goes on and on. But....no doctor can unravel this mystery. After 25 years, no one has gotten to the bottom of it and neither have I. AND, I have gotten to the point where I would rather watch a good television show than spend one more hour in a book reading about DISEASE. I did that for years. It got me nowhere and I could have enjoyed my life...even if it's a painful one. Watching "The Voice" is a good time for me and I would rather escape.

Who the hell knows why no one knows, or what is causing it, or what the root cause is. I would need to go to a geneticist, and perhaps GOD to get that answer.

Because we are people and as people we haven't been able to stop Hurricane Sandy from hitting so I guess there's the answer. Some things will take until after my lifetime for an answer, if that answer ever comes.

Then there is the question...is it the chicken, or the egg? Some people think it's all in the stomach. Some think it's all in the brain. Do you really think it's one thing? I don't. Nope. But people like simplicity. It makes sense to them, but what people need to realize is...the universe isn't here to make sense to you. It's just here.

 

[barbc56]

I'm not up for writing a lot so will be citing/quoting some sourcess. Please keep in mind these are my personal opinions and people can take what they want from them. Freedom of choice is important when it comes to these issues.

I would respectively disagree with the statement that pharmaceutical drugs kill more people than supplements.

I wrote about the “Death by Medicine” meme here. Critics gleefully cite statistics for drug reactions, medical errors, and iatrogenic deaths; but it is irrational to look at those numbers in isolation. Harms must be weighed against benefits. Medicine saves far more people than it kills. Many of those who develop treatment complications would have died even sooner without treatment. All effective treatments have side effects. We look at the risk/benefit ratios and reject treatments where the risk is greater than the potential benefit. The risk/benefit ratio of CAM should be compared to that of conventional medicine; if there is no proven benefit, no degree of risk can be justified

. Bold is mine.
http://www.sciencebasedmedicine.org/answering-our-critics-part-1-of-2/

To add to this, supplements are not regulated in the states.

A team of researchers tested 44 herbal products sold by 12 companies and discovered that nearly 60 percent of the herbal products contained plant species not listed on their labels. The researchers detected product substitution in nearly one-third (32 percent) of the samples while slightly more than one-fifth of the products included fillers, such as rice, soybeans, and wheat, not listed on the label. Although such unlabeled fillers present no problems for most people, some individuals, including those with allergies and those seeking gluten-free products, might be very concerned to find unlisted wheat, soybeans, and rice in a product.

"Contamination and substitution in herbal products present considerable health risks for consumers," Newmaster stated in a press release. And it’s not just fillers that present difficulties for those who are allergic. “We found contamination in several products with plants that have known toxicity, side effects and/or negatively interact with other herbs, supplements and medications," Newmaster added

Bold mine.

http://www.biomedcentral.com/1741-7015/11/222/abstract

This is with supplements bought in the USA and Canada. I shutter about what pills from other countries might contain as they have fewer even fewer restrictions.

Big Supplement is a 25 bIllion industry.
http://edzardernst.com/2012/12/dietary-supplements-are-they-taking-us-for-a-ride/

Big Supplement like Big Pharma is not immune to using lobbyists to further their agenda.

Today, Citizens for Responsibility and Ethics in Washington (CREW) released research demonstrating that the dietary supplement industry spent millions of dollars on well-connected lobbyists and made numerous campaign contributions to successfully thwart increased regulatory oversight of supplements. Read CREW’s report here.

“This is yet again another disturbing example of pay-to-play in Washington, D.C.,” said CREW Executive Director Melanie Sloan. “The old Schoolhouse Rock cartoon about how a bill becomes a law is sadly outdated – in today’s world, legislative results are bought and paid for

http://www.citizensforethics.org/pr...bombards-congress-with-cash-then-gets-its-way

Then there is Orin Hatch who has a lot to gain financially from deregulating vitamins and was instrumental in getting the DSHEA passed.
http://www.politicususa.com/2013/11/10/safe-congress-senator-orrin-hatch-politics-vitamins.html

Barb



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[Dr. Frost]

Dr. Frost, can you stop a snow storm? Can you make lightning stop from hitting? Why do we think as human beings that the world has to make sense or that we are going to know everything?

Because things have a cause. This isn't lightning hitting. This is biology. Biology is chemistry - it's not unpredictable. There is a cause, and if you determine this, you will determine the solution. This isn't black magic.

Maybe the problem is how you're looking at it. A cure for "cancer"? Well, no, there isn't a cure for cancer, because there isn't a single cause of cancer. But there are indeed known causes of cancer, and several do indeed have cures. Childhood leukemia is one. Other causes are known, but harder to fix - DNA hypo or hypermethylation is a known cause of many cancers, as are certain genes - but we're just not there yet. Viral infection is known to be another cancer cause, and indeed we have vaccines for some of these (e.g. HPV) - and know how to treat others which cannot be vaccinated (HIV being a notable example). Carcinogens are another, and for this the best tool is often avoidance. Oxidative damage is another, and for this we take antioxidants and try to eat a diet rich in foods that provide them. Metabolic disturbance is another, and here the treatment can be varied - exercise, or lifestyle changes, or surgery, or hormones, or drugs, or vitamins, or even gene therapy, depending on the etiology.

We are used to thinking "it's just one of those things" or "it's in your genes" because for most of history, we have not understood the mechanisms that underlie these conditions. That has changed, and it has changed fairly recently. Twenty years ago, for example, neuroreceptors were barely known. Ten years ago, epigenetics was in its infancy. A lot of the most profound discovery - and the linking of previous science to new discovery - has been achieved in very recent times. Genome sequencing has been a huge part of this; as has computerised analysis, computer modeling, and devices such as fMRI scanning.

Once you know the problem, there are usually things you can do to work around it, help recovery, or even cure the issue entirely. For example: DNA hypomethylation cancers are often a function of an impaired methionine and folate cycle. This is pretty solidly established. Detect and treat them, and you can offset the issue by working around the problem.

I can already tell you that a number of the things you mentioned in your list have known roots in genetics. Celiac, fibromyalgia, CFS, thyroid disturbances, and mood issues... these things absolutely do have commonality. I'm not going to mention a "cure" to you, because you'll think I'm preaching - but I will encourage you to get a genome screening, because I'm fairly certain you might find something there. And when you do, the treatment will suggest itself.

 

[Misfit Toy]

@Dr. Frost -I have considered seeing a genetecist. I will after my upcoming surgery. My problem is...I am exhausted and I see 2 docs a week. And, even if they do find a root cause, the answer as what to do is not always easy, as I can't tolerate many meds or supplements.

I was unsure what you were asking me since I am not a doctor, do not have the energy or the capability anymore to research or learn biochemistry. IT is too hard for me to figure out my problem.

The best of doctor's (in my area which is known for having some of the best physicians,) don't know what the hell is happening. I think it would take hours to figure out and since no insurance company wants to cover hours, doctor's don't have that ability either. Or they do, but they want money...understandably.

I was recently diagnosed with EDS. That's a huge part of this.

But again, even an answer I am finding....doesn't always bring comfort because it takes being able to tolerate some pretty hardcore meds, or even supplements that my body usually rejects.

 

[Dr. Frost]

Hi - I really do sympathise with you. Just six months ago, I thought I was going mad. I had gone from being an athlete, a multitasker in a high-performance job... to being so exhausted I could only manage the one-block walk to the supermarket once per week. My memory had degraded to the point that I was a danger to myself; blanking out in the middle of cooking dinner and finding myself 10 minutes later in another room, while dinner burned on the stove. And the depression and mood swings were just crippling. I was on medical leave for a year and I was not expecting to survive until Christmas.

I know Zyprexa, and the other drugs you mention, because I've been prescribed them myself. They didn't help me, either.

That is now gone. I am still recovering but I am at 95% and accelerating. I have left all my prescriptions in the dust; I don't need them any more. My friends cannot believe the transformation. All this was achieved not by random chance - it was achieved by me doing what I mentioned above; going down a list and checking off "possibles" until I came upon the thing that was wrong. And boy, does it seem obvious in hindsight - but doesn't it always?

All my symptoms were indeed caused by a single set of issues. And in fact; not just mine - my mother's, my brother's, my family's ailments in general can all be neatly checked off on a list of symptoms which can be expected to be caused by my condition. It was a revelation, I can tell you! I'd always been annoyed that all these things were happening to me - me, who'd always tried to be healthier than anyone! I couldn't believe I had asthma AND vitiligo AND depression AND all the other things. It was ridiculous that lightning could strike me THAT many times. There had to be a cause. I looked for it, and by the grace of god, I found it just in time.

Well... "it". Some of the most serious issues I could fix, yes. And these helped, in turn, the other issues. There are some things I'm still working on puzzling out a "fix" for. I've had some good results already - the final few I'm still chewing on, because they're to do with immunoresponse and leukocytes, and that's a tougher nut to crack. But I know what's wrong, and what I need to achieve, and in the meantime I'm 95%+ better. Not bad for a few months work!

There's always a reason. If your body rejects certain supplements: that's a clue. If you don't react well to certain drugs: that's a clue, too. If you understand the pharmacodynamics ... that is, what these drugs do in the body... you'll likely start to see patterns emerging.

I know that's an awful lot to think about - and it's hard to think when you're sick. I fortunately already knew enough about chemistry, psychology, neurobiology and biology (long story there) that I was able to make connections. Even so, I credit the final "push" to a brain in survival mode, frantically raiding all my memory for a way to keep living. It was definitely a close call.

Which is why I like forums such as this. The experiences and knowledge shared by others was a huge help in finding the cause of my problem. This is where we all come together to share and to learn... and, maybe, to find an answer that cures. Or at least, helps,.

I don't necessarily say that your problem will be the same as mine. But an awful lot of what you mention is ringing bells in my head; I came across endless references to your combination of symptoms and I'm pretty sure the answer to your issue will be revealed in a gene scan. I know the answers may be hard to tease out of that scan, but heck - that's one reason why I'm here. If all those countless hours I spent reading can be put to good use helping others, well.. I'm a happy man.

Good luck - and hold on - there may be hope yet!

 

[brenda]

@Dr. Frost

Can you explain to me please why homeopathic remedies are used successfully by veterinary practitioners, some in fact using it as their sole treatment mode? If you say that most conditions resolve on their own then that must apply for humans as well.

 

[Snowdrop]

A couple of points that come from the discussion above.

"I am all for new therapies, but it must be science-based. There must be solid evidence of effect, backed by a plausible mechanism that fits current, proven science. Homeopathy has neither of these things."

Not everything that would seem to have sound solid scientific evidence in fact soundly and solidly scientific.
Graded exercise therapy and Cognitive Behavioural therapy for treating ME are a case in point. Science is not performed in a vacuum. There are huge financial interests that make some evidence based medicine suspect. Not all scientists can be trusted to provide unbiased data. There has been harm done in the past in science research especially when researchers team up with the military.

From reading your posts it sounds like you are suggesting that you have something to offer us. Please don't keep us wondering. We are all very sick people looking for what will make us well and return us to functioning like normal.

 

[Dr. Frost]

Hi Snowdrop,

I totally agree. One of the fundamental problems with any research is that of bias. It can be either commercial bias, or the bias of pride - or even unconscious "selection bias" or errors in methodology.

The pharma industry is no great friend of mine, and an exampe of that is their opposition to rTMS.

rTMS (repetetive Transcranial Magnetic Stimulation) is a therapy which can be amazingly effective. I've had it, I've seen it in others, and it can be nothing short of miraculous. It's also an amazing research tool. rTMS harnesses simple principles of electromagnetic induction - it uses enormously strong magnetic fields to stimulate very tiny currents in tissue. These currents are calibrated to be the same current your neurons normally fire at. In other words, when focused on an area of the brain, it forces neurons to fire.

This is a profound discovery. Instead of using drugs to cause chemical changes (which in turn, cause neurons to fire differently), you can stimulate them directly. Because you're using magnetic fields, there's no need to implant electrodes in the brain. And best of all, you can pinpoint precisely which part of the brain you wish to stimulate. This is demonstrated in the calibration of the TMS device during a session - they place the field's focus over the area of your brain that moves your fingers, and give it a pulse. Your fingers will twitch in time with the pulse, when the calibration is right. This is not black magic or pseudoscience; merely a really nifty tool to "poke" the brain without actually having to poke it.

I participated in rTMS with McGill University Neuroscience department. The working model of rTMS in depression is that there's a kind of "feedback loop" between the brain's primal alert center (the amygdala) and the prefrontal cortex. Normally, your amygdala sounds the alarm all the time - when you cross the road and see cars nearby, for example. You can see this happen when little kids freak out at crossing the road, or going onto an escalator. But the job of the prefrontal cortex is to moderate this - to shut the amygdala up. This is why you don't continue to freak out at cars and escalators when you're an adult.

However it appears that this feedback circuit is prone to "going offline". One of the first symptoms of almost any neurological problem (Alzheimer's, or drug-induced brain damage, or traumatic brain injury such as concussion) is depression and anxiety issues. The link is disrupted - and once it is, nothing stops the amygdala from sounding the alarm. Worse, it's a vicious circle: the more the amygdala sounds the alarm, the stronger it gets, and the more stress you perceive... which weakens the feedback circuit even more. The result: depression.

rTMS treatment for depression works on the finding, many years ago, that electroshock therapy was amazingly effective at treating stubborn depression. In fact, it's still used today for that purpose in severe intractable cases. However, electroshock came with a host of other issues - memory problems for example - due to the crude nature of the therapy. It's shocking the entire brain, and with huge amounts of electrical current. rTMS is the "finesse" method; stimulating very precise brain areas with very precise, small amounts of current. The theory was that by stimulating the prefrontal cortex, one can "jumpstart" a broken feedback loop and obtain the benefits of electroshock without the problems.

And so it does- at least in about a third of cases. The other two thirds will tend to see improvement, but it will drop off a month or two after treatment. The working theory as to why that happens, is that these people are still under neural stress - that is, the root cause of the neural attack has not been dealt with. rTMS will jolt a stressed system back into life, but it'll inevitably fail if the underlying issues aren't fixed. Nonetheless, rTMS remains a very powerful tool, and is increasingly being used in hospitals.

So what has this to do with pharma? Well - it's the ultimate threat. Pharmaceutical companies make more money from antidepressant medications than from any other single suite of drugs. rTMS was threatening to cure 1/3 of people, and help the other 2/3... without using a single pill.

Health Canada approved rTMS in 2001. However, the FDA in the USA took nearly a decade more to do the same. One of the department's members was on the team that sat on the FDA's advisory panel for rTMS, and he told me (unofficially of course) that the reason for the decade-long delay in the USA was entirely due to resistance by the pharmaceutical companies. The pharma companies have more sway in the USA than in Canada; hence the proportionately longer delay.

So no, I don't trust pharma companies. Equally, I take naturopaths (or anyone else in the business of selling cures) with a grain of salt. And so should everyone.

But that doesn't always mean they're wrong. It simply means that you need to gather evidence and studies from a wide range of sources. A single study doesn't mean much. A hundred studies means more. A few thousand mean more, especially if they're large and if they're performed by a range of independant scientists all over the world.

Einstein famously said: "No number of experiments can ever prove me right. But it only takes one to prove me wrong". It's true, and it's a philosophy I apply here. As soon as I see a study which says something might work, I look at the logic of it... then go and look for other studies that may disprove it. I can publish a thousand studies saying the sky is green; it takes one photo to show that I'm wrong.

After looking at the evidence for and the evidence against, I find myself in a position to make a decision... and not before. If I'm searching the Web, for example; I might Google for "Vitamin B12 benefits"... but then I will always Google "Vitamin B12 toxicity". And I will read and read, and look at study size and methodology and above all how the theory matches with what we already know... and then it tends to be fairly clear if I can start to trust it. Until then, it just remains an interesting tidbit to file in the "possible leads" section of my brain.

Often, the search for adverse effects... "disproof" of my theory... will reveal interesting stuff. An example would be the leucine/beta-alanine toxicity I mentioned in my original post. If you go to bodybuilding sites, or Google "leucine benefits", you'll see nothing but good stuff. If you then Google "leucine toxicity", you'll start to see the oncology and ageing information that shows you the other side of the coin. And at the same time, you learn about the connection between the two.. the pathway... and that can be an "aha" moment for many other things.

I learned to be this rigorous in early age - I had scientific parents. I also studied statistics at University; I have an interest in psychology of bias and I'm kind of anal about details. All these things helped me. However I understand that many people don't do this. It's a deep human instinct to believe in something we want to believe, and this can often lead us astray. The only way to stop your own instinct from getting in the way of truth, is to play devil's advocate with yourself.

 

[GracieJ]

The only way to stop your own instinct from getting in the way of truth, is to play devil's advocate with yourself.

Before I comment on the bit I just quoted, I would like to say thank you to Dr. Frost, first for changing the thread title, and second for coming back and sharing more of his thoughts. The thread is turning into a good discussion and not the polarized battle it could have been. (I edited my first post re: the original thread title.)

I very much agree with the idea of playing devil's advocate, no matter the method being implemented.

I also believe that science has not caught up with common sense in many ways.

Rather than going into a long discussion of "proofs" or quotes for any point of view or remedy, I will say this: The key always has to fit the lock. Whether you go with conventional medicine or alternative medicine or anything in between, the remedy needs to match the symptom and be effective in life-changing and life-supporting ways.

These days, I use only alternative medicine. It came from years of falling through the cracks, sometimes being given prescriptions that made me extremely ill, or having my symptoms ignored. If I were in a situation where I needed allopathic medicine, I would be praying for a doctor who would hear me out and exercise common sense in prescribing, given my long history of adverse reactions.

With the push on to produce pharmaceuticals that may or may not work, it is only logical that we as consumers study and learn as much as possible before accepting a prescription.

The same holds with alternative remedies. I have studied enough to this point to know that health food stores are more like the grocery stores these days in that maybe only 10% of the product in the store is any good. Whether or not a product even starts to be bio available, or what dose will do any good at all, or how long it is needed is not an easy thing to determine.

I am in the minority here on PR, functioning at 75% and using natural remedies only. There have been many who have asked me what I am taking. I have shared that with caution, as every person is different. It has taken years to figure this out. No cures, just balanced management. It has been extremely frustrating at times, wanting to share more of my experience but feeling shut down because I am not singing the company line with prescriptions in hand. I nearly left PR a couple of times over the issue, but would always decide to stay on and post. I never know when something I say will be someone else's missing piece.

It has been my experience to see some very bizarre "out-there" things work that are not supposed to work. The earth is not flat. One of those things is homeopathy, and I think the science behind it actually has been explained well already. Whether or not it is accepted may take another century or two, but that is how it goes. The same can be said of several alternative methods.

At the same time it is wise to question every piece that comes along, playing devil's advocate and rigorously questioning all of your OWN assumptions on anything, it is also wise to shut up and listen to your neighbor's point of view, rather like the wise old owl who became wiser the longer he sat and listened.

It is nice to see the participants in these forums coming together more and more in healthy discussions from entirely different viewpoints without destructive elements sneaking in.