Does anyone else think too that methylation does not work?

Discussion in 'Fibromyalgia Main Forum' started by Sceptical, Dec 31, 2009.

  1. Sceptical

    Sceptical New Member

    I think methylation is just another ripoff. If you are not overstimulated you might perceive stimulation as improvement tough. It is so funy to see how overstimulation, anxiety and other nice side effects are interpreted as "detox syptoms".

    I know many CFS patients and all of them are overstimulated to some degree. I do not think that stimulating medications or dietary supplement could do anything good.

    The worst thing is that people experiment on us but no one has a clue what to do when side effects come up. My heavy metal provocation test for instance considerably improved but I have never been so anxious. It was not worth. I do not see any symptomatic imrovement. Heavy metals did not bother me at all.
  2. mbofov

    mbofov Active Member

    Sceptical - I presume you're referring to the methylation protocol recommended by Richvank. It does not stimulate me, actually quite the opposite. I have been doing it off and on for 2-1/2 years and believe it is responsible for shortening the duration of my crashes and also making them less intense.

    I started getting sick in 1985, although the worst symptom, post-exertional malaise (crashing after minimal exertion), did not start until 1998. As you can see, I've been battling illness for a very long time and for a very long time had no improvement, except for getting help with digestive issues and weak adrenals via muscle testing.

    I have detoxed a lot on the methylation protocol, and my detox symptoms generally are loss of appetite, extra fatigue, feeling fluish, and intestinal upset, none of which are stimulationg. If the symptoms were really bad, I'd take activated charcoal to mop up toxins. I did a liver detox several years ago and felt quite sick and tired so I'm familiar with detoxing. My liver did improve a lot after the detox, so it was worth it. detoxing is getting toxins out of your body and it generally makes you feel like you've been poisoned a bit, because toxins are circulating through your body.

    I learned to take the protocol very slowly to minimize detox symptoms. Anyways, the proof is in the pudding and I have made progress, and before I started protocol, I had made no progress re the PEM since it began.

    I agree with you in that I don't think overstimulation and anxiety are detox symptoms. I have heard of people getting overstimulated by B vitamins but that's not detoxing.

    I don't know what you mean by stimulating medications - do you mean a form of speed? Obviously that would not be good.

    But I do believe many dietary supplements can be beneficial. I think our bodies are made for health, not for drugs, and hope that proper nutrition through food and supplements can help restore health. But it is a long slow road. I'm lucky in that I have a doctor who is extremely knowledgable about nutrition and supplements - e.g., a few years ago he got me taking d-ribose. I also do B12 shots and a host of other stuff. I wouldn't write it all off.

    I'm going to be starting low-dose naltrexone tonight and will see how I do on that.

    I don't know what your heavy metal provocation test was or what made you anxious. Did you start the methylation protocol and get anxious?

    Did you ever do the Vitamin Diagnostics test that Rich recommends? This test will show if you have trouble with methylation and thus whether you're a good candidate for the protocol. And if it indicates you are a good candidate for the protocol, perhaps taking smaller doses would help.

    I for one am very grateful to Rich. I'm willing to be a guinea pig because I want my life back and the regular docs are useless with this illness. So I either try something and it helps or doesn't, or do nothing. I'd rather keep trying.

    Muscle testing has helped me a lot during all of this by indicating what is good for me and what isn't, and it has consistently indicated that the methylation supplements are good for me. I know many people think that MT is a load of c**p, but it's helped me when nothing else has.

  3. Sceptical

    Sceptical New Member

    Glad it has helped you.

    I was helped by prof. DeMeirleir. Before his treatment, I was unable to walk, read and was a wreck. After two years on Nexavir 2cc, b12IM 10mg, liposomal glutathione 1 ts, vsl3, etc I gained some 65% (up from 10). I work out in the gym three times. Of course I am still sick and do not continue to improve but I do not beleive in
    'alternative therapies". They are also very expensive. Methylation panel cost almost 1000 dollars.

    I got sick from folinic acid, more b12, p.serine complex and have to spend months to get to the same level. The web page what Rick also endorses sells so called nucleotids for anxiety, cca 85 dollars for 10 days. No one has ever commented on those stuffs. If you add the costs for a month plus meth. panel, etc you reach the costs of a conventional treatments. I am so sick that everyone experiments with my health using my money.

    According to the majority of researchers, CFS develops from a chronic viral infection. Simplified approaches (only b12, folinic acid, mega IV VitC, Omega 3) all have failed.

  4. mbofov

    mbofov Active Member

    The methylation panel from Vitamin Diagnostics costs $300, not $1,000. I had it done a couple of months ago. And the methylation supplements, because I take such small doses and have stopped and started so many times, have lasted me for 2 years. The initial cost was around $60 to $80, I forget exactly how much. So actually, except for the Vitamin Diagnostics test, it's been very cheap for me to do. I don't buy any nucleotides for anxiety. I do use l-theanine, a cheap amino acid which helps the brain produce GABA.

    Rich has a study published which shows that the methylation protocol did help many people with CFS. I don't know what the majority of researchers you refer to are, but many people on this board have been helped by the methylation protocol.

    I am glad you were helped by Prof. DeMeirleir and am sorry you reacted so badly to the methylation supplements. I reacted very badly to some prescription anti-depressants so I never took them more than once. We're all different.

    We do all seem to have so many different symptoms, and then many in common, I seriously doubt we all have the same malady, so it makes sense that something that helps one person will not help another. I do great on B vitamins. Other people don't.

    I agree that it appears that CFS is related to a chronic viral infection, quite likely the XMRV retrovirus but I don't agree that the simplified methylation protocol has totally failed. I don't expect it to kill the virus (nothing can do that), but it has helped me and many other people. It didn't help you, which is unfortunate. But again, we're all different.

  5. richvank

    richvank New Member

    Hi, Adam.

    I'm sorry to hear that the methylation treatment was not helpful for you.

    You mentioned becoming overstimulated and experiencing anxiety while on this treatment. Quite a few people have reported this. It seems to be associated with excitotoxicity in the neurons that have NMDA receptors. This same issue has shown up in treatment of the methylation cycle block in autism. Various supplements have been suggested by Dr. Amy Yasko to counter the excitotoxicity, including magnesium, GABA, theanine, taurine, Valerian root, pycnogenol, grape seed extract, and others. Some of these are fairly inexpensive. She also recommends some of her RNA formulations, which are more expensive, as you noted.

    As has been mentioned, the Vitamin Diagnostics methylation pathways panel costs $300. I recommend running that panel to see if there is indeed a partial block in the methylation cycle and/or depletion of glutathione. Nearly all PWCs who have been tested do have a partial methylation cycle block, and most also have glutathione depletion, but some do not. This panel provides a basis for deciding, together with a physician, whether the methylation cycle is something that needs help in a given case.

    This panel should be available again about the end of January. The lab has been moving to a different building, and it will take time to get all the equipment set up and recalibrated, and to pass the necessary inspections to get back into operation.

    I hope 2010 is a better year for you.

    Best regards,

  6. Sceptical

    Sceptical New Member

    When I say anxiety I mean severe insomnia, fear, loss of appetite, muscle cramps, etc. I donated my supplements to someone in the family who developed the same symptoms. I followed your and Amy`s protocoll, tried out l-theanine (exacerbates anxiety), taurine (same problem), Mg (ineffective even at high dosage) and all of them failed to inhibit excitotoxicity. In addition, I might have high taurine levels (as some cfs patients) and cannot tolarate sulphur containing stuffs since the onset of this disease (dmsa, dmps, glutathione, etc.). How can I test my taurine level (are such test reliable)?

    What pycnogenol and grape seed is concerned, patients should be warned that they are contraindicated with almost any medication by effecting our detox system. We all take medications for sleep, etc and this is a valid concern. What dosage should I take and how long? Do you have experience in this field (the field of side effects)?

    What do you think?

    My experience is that you cannot recover or significantly improve without immunomodulating/antiviral agents. This is a neuro-immune disease. I also profited a lot from them. Those who are not overstimulated might benefit from stimulating treatment of course.

    What I see Rich is that researchers have specific and conflicting ideas about what is wrong in CFS. Everyone favors a theory which has nothing to do with the etiology of this disease but simply targets some patological aspect of it. I do not rule out that it can be helpful for some though. My question is as follows: If you think you know what`s going on in this disease you should also know why this theory is not working for others. If we have an underlying viral infection, the etiology is highly likely the same.

    Excuse me for the tenor of my email but your theory has shifted my medical condition in the wrong direction and I am not alone. If so, it does not seem to be a common denominator in cfs. Finally, it is easy to overstimulate but extremely difficult to calm nerves down. I do not wanna take Pregabalin or some NMDA agonists and "enjoy" excessive daytime sedation from them.

  7. AuntTammie

    AuntTammie New Member

    I have not actually tried the methylation protocol yet, although I have read a lot about it and I do actually really want to try it. There are several reason why I have not done so yet - very long story so I won't get into all that- but none of my reasons have to do with having any doubts about the science behind it.

    As far as I can see, it fits better with all aspects of CFS that have been discovered thus far than any of the other theories out there.....and it does not seem to be discounted at all by the discovery of XMRV either. That does not mean that trying it will automatically be without issues, side effects, etc, or that it will work for everyone. We all seem to react differently to so many things.

    That said, I mainly wanted to write to comment on your statement that it seems to be another rip off. Rich is not making a profit off of this. The initial test (at 300) is not cheap, but it can be very helpful, and he does not make anything off of it, not does he make a profit off the recommended supplements. I understand that many people do seem to be out there just to gain money from desperate people, and I can see why you would want to be cautious of that. I also understand that you did not have a good response to trying it and are probably frustrated by that and feeling like you wasted your money. I'm sorry that happened to you, but I do really believe that Rich is not one of the people out to get us. He has been very helpful, has written lengthy, solid explanations on here, free of charge, and has otherwise just been doing his best to help us. And his protocol has helped quite a few people.
  8. Sceptical

    Sceptical New Member

    First methylation panel was 625,- (holisticheal) and is now somewhat discounted:495,-. Even if I could buy somewhere a test which costs ONLY 300 dollars this is not insignificant by far. We all have to pay for many other meds like immunomodulating agents, probiotics, antioxidants, sleeping aids, tranquillizers, lab tests (650 for XMRV), doctor`s fee, etc. Of course the sleeping aid Nancy Klimas advocates (Xyrem) and which costs at least 1500,- dollars a month is more burdensome. When I say ripoff I refer to the research driven health care industry as a whole.

    I do not think and never meant that Rich`s purpose has been to take our money. What I was gonna say was that there must be a common denominator in CFS which is obviously not glutathione depletion/mcb. Otherwise patients would recover. Of course researchers who are not themselve sick are optimistic. They focus on some well known attribute of this disease and extrapolate it on the whole disease. The resulting treatment will thus necessarily fall short of a significant improvement or recovery. The same was true with respect to the oxidative stress, gut dysbiosis, hydrogen sulfid dysregulation, acidosis, etc.

    Rich was refering in short to some dietary supplement as a remedy for overexcited neurons (so called NMDA antagonist) I however have never seen reliable accounts of patients who were in comparable situation, were put on herbal remedies and responded to this treatment. Medical science does not know about it. Of course, If you get memantine or pregabalin (approved meds) they will certainly free you from anxiety you have. The downside is that you also get in the package daytime sedation, lack of energy, etc.

    The upshot is that I spent money again for something which has a lasting, negative impact on my health. Although Rich extensively detailed the simplified approach, spent only a cursory remark on how to "treat" the side effects (overstimulation must be dealt with or something like that). Of course I tried L-theanine (stimulating again in my case), Mg (no effect whatsoever), GABA (nothing) and they all failed to yield any result. I am not alone with that. What should we now do???? I am not happy that there are some NMDA receptor agonists available which are linked with significant side effects.

  9. mbofov

    mbofov Active Member

    The Vitamin Diagnostics methylation panel does cost $300 - (you said "if" there is such a test - there is)
    Vitamin Diagnostics, Inc. Rt. 35 & Industrial Drive Cliffwood Beach, NJ 07735 USA Phone: +1 (732) 583-7773 Fax: +1 (732) 583-7774)

    Rich did say they are moving so this address may not be good, but hopefully the phone number is.

    Yes, it was a lot of money for me, but it was worth it as it confirmed that I was on the right path doing the methylation protocol.

    Have you ever had your cortisol levels tested? Mine were quite high several years ago. I found this out through the Adrenal Stress Index Test, where four saliva samples are taken throughout the day. I was given Seriphos (phosphorylated serine) and it helped immediately in calming me down but not sedating. I had to take it for quite awhile to get my levels normalized.

    The medical establishment has let us all down so badly. Read Osler's Web if you haven't. The CDC and NIH have ignored and denied the reality of this illness since the mid-1980's. Research money was not properly spent. I am just really grateful to Rich that he's even working on this despite hostility and skepticism. And he's not making money off of it. I think the ones deserving of our anger are the CDC et al, who had the money and resources and squandered it and even worse, denied that we were really ill. There is so much catching up left to do now.

    No, Rich doesn't have all the answers. But at least he's trying, which is more than can be said for the mainstream medical establishment.

    FWIW, I was helped tremendously by muscle testing. I was forced to try this because I was not getting any help from mainstream medicine. People scream quackery but what do you do if there is no one to help you? Anyways, muscle testing done by a competetnt chiropractor helped me with many issues. No, it was not the answer to everything, but it has helped me a lot with many issues. Something else you might want to look into.

  10. AuntTammie

    AuntTammie New Member

    First off, I want you to know that I am not by any means unsympathetic to the results that you have had from trying the methylation protocol. I have spent money and tried various things after doing a lot of research on them and have wound up feeling worse and not being able to improve back to my previous level of functioning. So I do understand why you are upset. I have also tried things that have only helped minimally and cost more than I could really afford.

    At this point I do not expect that anything will bring complete improvement, or necessarily even a large amt of improvement. If XMRV is the cause or a cause, then it is permanent and nothing is going to change that. However, I am still willing to keep trying things that make sense scientifically, bc even if the improvement is small, finding enough things that provide even small amts of improvement, when put together can make a fairly decent impact. Also, even if the cause is permanent, the various ways in which it affects our bodies may be able to be mitigated. If XMRV turns out to be the main cause, the methylation protocol could still make a lot of sense for many people.....and could still not help others at all, or even make them feel worse.

    Like I said before, unfortunately we all seem to respond differently to a lot of things. I think that is probably bc the underlying cause can interact with so many other issues, and we may all have the same cause (or we may not), but we probably have a variety of different other issues. I am not sure if I am making sense here, but basically I think that we are at least somewhat on the same page in our thinking about this. I do think that Rich's protocol makes sense for people who fit the criteria for trying it; however, if XMRV is the cause, then Rich's protocol won't necessarily bring about a cure. It could help SOME people to improve a lot, though. That does not mean that it won't cause problems for others. He has always been upfront about the risks, which is more than can be said about many of the other proposed treatments.

    I am glad to read that you don't think that Rich is in this to get our money. That is not how your first post sounded, and that is the main reason why I initially responded. Everything that I have read by him (and that's quite a bit), indicates to me that he is truly trying to help and I did not like reading what appeared to be an attack on his motivation. (I also do not like finding out that someone has spent money and been made worse - like I said I do truly feel for you and your situation, too.)

    And, getting to the cost, I am not sure where you had the initial testing done, but I do know that the place that Rich recommends charges $300 for the test. I never said or even implied that $300 is inexpensive. In fact, my exact words were, "The initial test (at 300) is not cheap". Yet, you came back and said, "Even if I could buy somewhere a test which costs ONLY 300 dollars this is not insignificant by far." Guess what? A big part of the reason that I have not had this test done is that I cannot afford it. After I pay rent, I have $200 left for ALL the rest of my living expenses, and I am living in the cheapest apt I can find. Actually, this apt is probably making me sicker, but I cannot afford to move. There are quite a few tests and treatments that are out of the question becasue I am disabled due to being sick and living on a poverty income. So, I think that maybe, just maybe, I do understand what it is like to be very poor, and that the test is not cheap, nor affordable for many of us. I only brought up the amt at all to say that compared to the amt you had mentioned that you paid, it was significantly less.
  11. richvank

    richvank New Member

    ***Hi, Adam.

    ***My responses are at the asterisks below:

    When I say anxiety I mean severe insomnia, fear, loss of appetite, muscle cramps, etc.

    ***I get it. Definitely not fun. Some others have also reported at least the combination of anxiety and insomnia, and these have been big barriers to doing the treatment for them.

    I donated my supplements to someone in the family who developed the same symptoms.

    ***I'm sorry that this happened to that person, too. I think it's possible that there is some genetic inheritance involved in this, but I don't understand it in detail. This doesn't seem to affect the majority of people who try the treatment, but it is a definite problem for quite a few.

    I followed your and Amy`s protocoll, tried out l-theanine (exacerbates anxiety), taurine (same problem), Mg (ineffective even at high dosage) and all of them failed to inhibit excitotoxicity.

    ***I'm sorry that these didn't work for you. I think that a possibility to explain this might be low vitamin B6 (or its active form. P5P, which required vitamin B2 for its synthesis). The enzyme glutamate decarboxylase, which converts glutamate to GABA, requires this vitamin as a coenzyme. In studying the MAP and UAA panel results from quite a few PWCs, I have found that many have markers indicating low functional B6 levels. I suspect that this occurs because PWCs utilize amino acids for fuel in the Krebs cycle more than normal, and B6 is probably lost at a higher rate because it is called upon to help convert one amino acid to another in the required transamination reactions for feeding the Krebs cycle. B6 acts catalytically, and thus isn't used up as a reactant, but I think some is lost during the cycling back and forth that is involved.

    In addition, I might have high taurine levels (as some cfs patients) and cannot tolarate sulphur containing stuffs since the onset of this disease (dmsa, dmps, glutathione, etc.). How can I test my taurine level (are such test reliable)?

    ***I would suggest a plasma amino acids test. Conventional medical labs offer this test, as do the specialty labs, such as Doctor's Data Lab. As far as I know, these tests are reliable. Amy Yasko uses a urine amino acids test, but in the case of taurine, I think that in CFS the urine taurine level can be high while the plasma taurine level might be low. The reason is that beta alanine is often high in CFS (perhaps because of dysbiosis in the gut), and beta alanine competes with taurine for the same reabsorption transporters in the kidneys, so that high beta alanine can cause wasting of taurine in the urine.

    ***The sulfur intolerance could be caused by inability of the sulfite oxidase enzyme to handle the extra load of sulfite, and sometimes molybdenum will help with that, because it forms a cofactor for this enzyme.

    ***Another possibility is that there is a big population of sulfate-reducing bacteria in the gut, which make hydrogen sulfide. The extra sulfur may be causing these bacteria to make more H2S. The new H2S urine test appears to indicate that these bacteria are a problem in at least part of the CFS population. In this case, fixing the gut issues might help.

    What pycnogenol and grape seed is concerned, patients should be warned that they are contraindicated with almost any medication by effecting our detox system. We all take medications for sleep, etc and this is a valid concern. What dosage should I take and how long? Do you have experience in this field (the field of side effects)?

    What do you think?

    ***Thanks for raising this issue. Interactions between supplements and drugs should always be considered when a person is considering adding a new drug or supplement to their regimen. It's always a good idea to consult with your doctor and your pharmacist about possible interactions. No, I don't have experience in this field. I do have copies of the PDR for Nutritional Supplements and the book Herb, Nutrient and Drug Interactions. Neither of these mention proven interactions between grape seed extract and drugs, but I see that there are sites on the web that state that there "may" be certain interactions. I don't know if these statements are based on theoretical considerations or evidence, but it's always good to be cautious about possible interactions.

    My experience is that you cannot recover or significantly improve without immunomodulating/antiviral agents. This is a neuro-immune disease. I also profited a lot from them. Those who are not overstimulated might benefit from stimulating treatment of course.

    ***I certainly agree that both the nervous system and the immune system are affected in CFS. Immune modulating supplements and antivirals have been helpful to some PWCs. Others have not responded to them very well. I'm glad that they have helped you. I wish we were better able to predict what would help in a given case and what would not. Lab testing can be helpful in this regard, but I realize that this is not financially feasible for everyone.

    What I see Rich is that researchers have specific and conflicting ideas about what is wrong in CFS.

    ***That's true. I have ongoing discussions with several of them. I would say that the biggest cause for this ongoing deadlock is lack of sufficient funding to test hypotheses.

    Everyone favors a theory which has nothing to do with the etiology of this disease but simply targets some patological aspect of it.

    ***Some of the hypotheses do start with etiology, but it may be that there are a number of etiologies that can lead into the same pathogenesis and pathophysiology. For example, the hypothesis I've proposed (the GD-MCB hypothesis) suggests that a wide range of physical, chemical, biological and psychological/emotional stressors can contribute to depleting glutathione and can thus lead into a partial methylation cycle block if the person has the appropriate genetic predisposition. This may seem like a fuzzy proposed etiology, but I think it agrees with both the known biochemistyr and with the wide variety of pre-onset health histories that I have received from PWCs. We have yet to get enough information about the XMRV retrovirus to know what its relationship is to the etiology of CFS. What we have so far suggests that it may be necessary but not sufficient to produce CFS, but this could change if the virus is not found in nearly all PWCs in further testing. Time will tell about that.

    I do not rule out that it can be helpful for some though. My question is as follows: If you think you know what`s going on in this disease you should also know why this theory is not working for others.

    ***I think I do know some of what's going on, based on bringing together biochemical theory, evidence from lab testing and patient history and symptoms, but certainly not all of it. I also want to point out that understanding the etiology, pathogenesis and pathophysiology is one thing, but developing the optimum treatment based on all of this is another. Knowing the first can certainly help with the second, but it doesn't immediately get you there. I think that more studies are definitely needed to improve treatment. It isn't easy to get funding for treatment studies that don't involve patented drugs, though.

    If we have an underlying viral infection, the etiology is highly likely the same.

    ***I think all of us are looking forward to learning more about this, as the studies progress.

    Excuse me for the tenor of my email but your theory has shifted my medical condition in the wrong direction and I am not alone.

    ***I understand, and I'm sorry about this. I wish we were at the stage of having completed the research and having a proven treatment that will work for all PWCs. In the meantime, the choices are to do nothing, or to work with what we have in terms of theory and lab testing and make our best guesses. I do think that running the Vitamin Diagnostics methylation pathways panel before treating is a good idea, because it will reveal whether or not there is a partial block in the methylation cycle and/or glutathione depletion, and that will at least tell a person whether that is something they might benefit from correcting.

    If so, it does not seem to be a common denominator in cfs.

    ***So far, the evidence from the testing is that nearly all PWCs have a partial methylation cycle block. However, the evidence from use of the Simplified Treatment Approach is that only about two-thirds of the PWCs who try it experience benefits. So I think that tells us that the hypothesis may not be too bad, but that the treatment based on it needs to be improved.

    ***So some people have the methylation block issue, but the simplified treatment hasn't helped them. Why not? This is what I've been working to understand over the past few months. I think I have part of the answer, and it seems to vary for different cases. Some people seem to be low in the cofactor vitamins and minerals (such as B2, B6, zinc, magnesium or selenium) needed by the methylation cycle and associated pathways. Some people are depleted in the amino acids needed to feed this part of the metabolism (such as methionine, serine, glutamine, cysteine or glycine). Some have ongoing toxic mold exposure. Some have Lyme disease or other tickborne infections. If Dr. Klinghardt is right, kryptopyrroluria could be a factor in some cases. It requires testing to pin down what the issues are in the various cases. I don't know another way to do it.

    Finally, it is easy to overstimulate but extremely difficult to calm nerves down. I do not wanna take Pregabalin or some NMDA agonists and "enjoy" excessive daytime sedation from them.

    ***I understand. Thanks for taking the time to relate your experience. I intend to continue trying to figure these issues out.

    ***Best regards,

  12. AuntTammie

    AuntTammie New Member

    just a couple of suggestions, in case you are interested.....

    You may have already read about these, but there are a couple of supplements that have helped me when taken in a low dose when I'm feeling anxious and they don't seem to have the side effects that many others do (& I usually experience every side effect possible, it seems)....Tryptophan is one - can be used for sleep, too, but does not make me sleepy - just mellow .....Kava Kava is another (this one should not be used on a daily basis bc of potential problems with the liver, but such problems have only arisen in people that have used high amounts on a daily basis for a very long term.....generally the advice I have read with this is to use it a few times a week, just taking the dose on the bottle, and if possible to take periodic breaks from it for a problems have been reported with such use)....this one also makes me feel mellow and relaxed

    Of course, as with anything else, it is important to make sure either of these won't be a problem with anythign else (med or supp) that you may be taking
  13. richvank

    richvank New Member

    Hi, all.

    I thought I saw a request on this thread yesterday for me to provide evidence that the methylation cycle block treatment is effective, but I don't see it today. Nevertheless, in case anyone is interested, here is the URL of the poster paper Dr. Nathan and I presented at the IACFS/ME conference last March in Reno. It reports on a clinical study of this treatment. The actual study lasted for nine months, but the paper reported on only the first six months of the study. There was additional improvement during the remaining three months. There was also followup of some of the people in the study after that, and details are posted in the files section of the Yahoo cfs_yasko group's website.

    This study included both lab testing, including repeated use of the Vitamin Diagnostics methylation pathways panel, and also self-evaluation of symptoms by the patients who were treated. Significant improvements were observed in both types of measures. The limitations of this study are also described in the paper.

    Best regards,

  14. Sceptical

    Sceptical New Member

    Thank you very much for everyone's contribution to the issue I raised. I would like to clarify something. Rich's theory was definitely not helpful to say the least but I have not experienced anything else than heightened anxiety. This is bad enough in itself but not the end of the world. This is not his fault.

    Why I posted my comment was to give voice to my frustration about the whole mess called "medical research". I did not mean CDC only. I readily include everyone.

    I am gonna try out b6 and ph.serine but I am sceptical. Serine might also have a stimulating effect.

    Rich has a theory the validity of which I disprove in my case. He is referring to hydrogen sulphid metabolism problem and many-many possible factors. What H2O is concerned my prof. Kenny DeMeirleir had put me on antibiotics for 13 months for exactly the same reason followed by probiotics (VSL3 and Mutaflor). The only result was heightened and lasting anxiety. My stool tests show exactly the same bacteria and almost no sign of probiotics supplementation. What follows from that (if anything)? It is easy to construct theories but without breaking the underlying pathological process it is impossible to gain lasting, practical results.

    What antioxidants are concerned let me refer to numerous researches showing how they nullify the effect of chemo in cancer patients. Many pharmaceutical companies warn patients in Europe not to take antioxidants in general. Either chemo or antioxidants. They all interfere with phase I or II detox. No one will be able to tell you how this occurs in practice because meds use several metabolic pathways in general. Q10 might be the safest.

    The upshot is that I am happy if Rich's protocol seems to work for some. I sincerely wish good luck to his further research. I am not mad it was just really the final strow. I just realized that scientific knowledge on this field is scant at best. AT this time it is purely matter of good luck what is gonna happen to a patient. I have had a different picture on my mind about "science".

    Best wishes,
    [This Message was Edited on 01/05/2010]
  15. richvank

    richvank New Member

    Hi, sceptical.

    I understand your reason for being frustrated. I hope you can somehow get relief from your illness. It sounds as though you have a complex case, and that detailed testing may be necessary to develop a better understanding of how to treat it. I hope the B6 and/or phosphatidyl serine will help you.

    I'm sorry to hear that Dr. de Meirleir's treatment did not help your gut problems. I don't know if you have heard about the treatments involving breaking down biofilms in the gut, which are being used to treat children with autism now. I don't think there has been much experience in CFS with this yet, but it might be a possibility for you to look into. The idea is that the bacteria form films on the inner surface of the gut wall, and they are protected from antibiotics by being inside these films. Different species of bacteria support each other in the films in a symbiotic way. In order to knock out these unhelpful bacteria, the film must be broken down. The strategy suggested by Dr. Usman for doing this is to avoid intake of things that stabilize the film, such as calcium, magnesium and iron, and to take proteolytic enzymes, such as nattokinase and serapeptidase. Natural antimicrobials or antibiotics will then have better access to the bacteria, and are taken as well.

    With regard to the issue of whether antioxidants interfere with chemotherapy treatment in cancer, that has been a very controversial topic, as has the use of supplementary antioxidants in general. I think it's important to note that there are very strong economic interests involved in this controversy, and economic interest can influence the advice that is given. And unfortunately, much of the published antioxidant research has involved use of only a single antioxidant, not taking into account that antioxidants work together, passing electrons from one to another. This is an important example of the failure of the reductionist approach to give the whole picture in biochemistry. A systems approach must be used in this case.

    Below is a recent review that reaches a different conclusion about combining antioxidants and chemotherapy for cancer. I might add (and I realize that this represents only one case) that when I had rectal cancer several years ago, I combined strong antioxidant support with surgery, radiation therapy, chemotherapy, and a great deal of prayer. This combination worked for me. I asked both my radiation oncologist and my chemotherapy oncologist what they thought about using antioxidants before I did it, and they both approved.

    With regard to Phase I detox, the cytochrome P450 enzymes are known to produce superoxide free radicals during their activity, and antioxidants are needed to quench these free radicals. When oxidative stress is present, the detoxication system does not function well, for this reason.

    Altern Ther Health Med. 2007 Mar-Apr;13(2):40-7.
    Antioxidants and other nutrients do not interfere with chemotherapy or radiation therapy and can increase kill and increase survival, Part 2.

    Simone CB 2nd, Simone NL, Simone V, Simone CB.

    Simone Protective Cancer Institute in Lawrenceville, NJ, USA.

    Comment in:

    * Altern Ther Health Med. 2007 Sep-Oct;13(5):13.

    PURPOSE: Some in the oncology community contend that patients undergoing chemotherapy and/or radiation therapy should not use food supplement antioxidants and other nutrients. Oncologists at an influential oncology institution contended that antioxidants interfere with radiation and some chemotherapies because those modalities kill by generating free radicals that are neutralized by antioxidants, and that folic acid interferes with methotrexate. This is despite the common use of amifostine and dexrazoxane, 2 prescription antioxidants, during chemotherapy and/or radiation therapy. DESIGN: To assess all evidence concerning antioxidant and other nutrients used concomitantly with chemotherapy and/or radiation therapy. The MEDLINE and CANCERLIT databases were searched from 1965 to November 2003 using the words vitamins, antioxidants, chemotherapy, and radiation therapy. Bibliographies of articles were searched. All studies reporting concomitant nutrient use with chemotherapy and/or radiation therapy (280 peer-reviewed articles including 62 in vitro and 218 in vivo) were indiscriminately included. RESULTS: Fifty human clinical randomized or observational trials have been conducted, involving 8,521 patients using beta-carotene; vitamins A, C, and E; selenium; cysteine; B vitamins; vitamin D3; vitamin K3; and glutathione as single agents or in combination. CONCLUSIONS: Since the 1970s, 280 peer-reviewed in vitro and in vivo studies, including 50 human studies involving 8,521 patients, 5,081 of whom were given nutrients, have consistently shown that do not interfere with therapeutic modalities for cancer. Furthermore, non-prescription antioxidants and other nutrients enhance the killing of therapeutic modalities for cancer, decrease their side effects, and protect normal tissue. In 15 human studies, 3,738 patients who took non-prescription antioxidants and other nutrients actually had increased survival.

    PMID: 17405678 [PubMed - indexed for MEDLINE]

    Best regards,

  16. Sceptical

    Sceptical New Member

    I have taken MagneB6 for years. What Ph.Serine is concerned, I have had problems with choline and I fear I can expect the same side effects from serine (insomnia is a listed side effect). Moreover, PS has an impact on acethylcholine, thus a vicious cycle is established (or I just do not get it). Overstimulation showed up at the onset of cfs in my case. I have never read that it would be useful in this medical condition. Do you have a contrary experience? Does it relieve anxiety (I mean is there a chance, do you have first hand knowledge)?

    Do you have hands-on experience with RNA products (again first hand knowledge)?

    I do not consider myself a complicated patient. I work out in the gym several times a week, my medical condition has considerably improved but I am still sick (tired, anxious, sleep a lot, etc.) This is the upper level of medical science now. That is bad news because time goes on. I still have a perpetuating factor but we could at least interfere somewhat with the causation. That's it.

    What your suggestion with biofilm is concerned, I do not think it is feasable at this time in Central Europe. The same applies to plasma amino acid tests which might be routinely offered by conventional labs in the USA but not here. REDLABS is the only research driven lab here but if you check out its web page you will see that they do not offer too much... Sending samples to the USA is not an option because FEDEX does not offer the same technical conditions from here and I do not have the resources (ice, centrifuge, etc.). Any idea?

    I am sorry to hear that your medical condition was so bad years ago. At the same time it is always good to see someone recovered. That is rare in cfs. If I were you I would have never taken antioxidants in addition to chemo. If you look at research findings they are conflicting at best. One cannot be sure that the stuff one takes can make it to one's target organs. Antioxidants undergo extensive metabolism in the human body. You are lucky if you can raise your antioxidant status for two hours. Consequently, how much of them is necessary??

    Cancer is a specialty for various reasons. Cancer cells utilize the same "essential nutrient" and vitamins. If my source is reliable Vit. C concentration is the highest in the tumor itself. This might explain the success of Gerson Therapy (Swedish researcher) who advocated special diet (organic food, basically vegetables, resulting in considerable weight loss) and thereby withdrawal of nutrient which are necessary for tumor development in the first place.

    According to the studies I know antioxidant supplementation has deleterious effect for several reason (in cancer):

    It is misleading for your body because oxidative stress is part of the body's signaling process. This is especially true if antioxidants are taken by healthy individuals. In the latter case (good health), I do not know any research showing any benefit whatsoever. Second, antioxidants (like quercetine, milk thissle, etc) however beneficial they might be in general, might interfere with the absorbtion or elimination of almost every drug. If you take account of the fact that individuals with impaired medical condition already has detox problems, you can see how this position (usefulness) is questionable at best.

    For preventive purposes, I would drink Dd water (water with decreased deuterium content, "heavy water"). This is a Hungarian product which survived several clinical trials with very good result. The basic idea originates from Albert Szentgyörgyi (you know Vit.C, Szentgyorgyi-Krebs cycle) Deuterium is essential cofactor for tumor growth. Decreasing deuterium from water and feeding patients exclusively with Dd water practically kills tumor or at least causes it to shrink. This treatment results in a three to fourfold survival rate in patients having even distant metastasis. Especially effective in breast cancer but also very good in lung, kidney, colorectal and prostate cancer cases. It is said not to be harmful for human health (although it changes considerably its composition).

    Do you really suggest me taking grape seed extracts or pycnogenol? I mean have you seen patient with similar complaints who benefited from them? If you do not have hands-on experience, it is just hearsay. Otherwise, I would give it a try.

    I am gonna try Molybdenum. It cannot hurt.

    Please do not think I am trying to discredit you or your findings. I am just sceptical seeing the limits of medical science which are much closer than I originally thought. WHen I was very young, hale and healty, I read Maria Treben, a famous Austrian naturopath (she was cca 70 when she died) who recommended herbs for everything. I was so amaized how her "patients" had recovered from various types of cancer from nettle tea, marigold tea, milfoil tea, etc. I thought that our compendium was just an inventory of poisonous stuffs. As I grew up and developed tonsillitis which was not diagnozed early enough and resulted in CFS things have changed. Garlic was of course an unfortunate choice to replace antibiotics and surgery should not have been delayed. It was my fault including all the supplement I took to increase the effectiveness of my workout. I realized that medical science with its clear principles which you can apply (and schools) properly distinuishes itself from areas lacking scientific foundation but claiming the same status. I do not use the word junk science on purpose because its demeaning and sometimes medical science isn't a big help either. (I know how pharmaceutical companies have to sweat to show a 10% plus as compared to placebo to get antidepressants approved. It is so desperate.)

    Anyway, good luck to your research.


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    [This Message was Edited on 01/06/2010]
  17. gapsych

    gapsych New Member

    Is the "Gerson Therapy" the same Gerson who has a clinic in Mexico? If they are, I believe his therapy has been discredited. I will see if I can find more info. on this.

    Good point about using unproven alternative treatments which may delay effective treatment for disorders.

    A huge problem with studies using supplements for treatment, is translating the results into treatments used in the real world. Supplements are not regulated and while ingredients/composition of supplements can be controlled in a study the same can not be said for supplements that are bought OTC.

    I have never heard of the antioxidents during chemotherapy. I will have to ask my BIL as he is an oncologist/hematologist.

    While I certainly wish the best to Rich, I am not convinced that supplements are going to be the "magic bullet" to help CFS. I guess time will tell.

    This is a very interesting discussion from all points of view.


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    [This Message was Edited on 01/06/2010]
  18. Sceptical

    Sceptical New Member

    Hi Gapsych,

    I am not sure if we are talking about the same Gerson but something is clear. I do not know any reliable double blind, placebo controlled research which would have shown any benefit of antioxidant therapy in cancer cases. On the other hand, there are innumerous studies showing that antioxidant therapies are not able to slow progression of the disease. Few researches even resulted in accelerated decline of the patent's medical condition (beta carotene and lung cancer in smoking patients). What we can say is that antioxidants have no effect whatsoever at least in cancer cases at best. Many researcher even point out that the only proven benefit of an antioxidant therapy is its interference with drugs which is almost certain. It is healthy to eat fish, apples etc. But if you take 3x 500 mg quercetine as I do, it equals eating 8 pounds of onion or something like that. One caps of green tea extract equals 10-16 cups of green tea. In some sense they are no more dietary supplements to say the least.

    The problem with cancer is that tumors utilizes the same substance as normal cells. Moreover they basically compete for these substances. This is why taking dietary supplements like vitamins cannot offer any real help to patients. If I know correctly, vitamin concentration is the highest in cancer cells.

    Gerson created a special diet for cancer patients only. This is basically a vegetarian diet relying on organic foods. Of course this is a very simplified explanation. It's basic idea is that we have to preserve our immune system in a functional state which is often not possible after chemo. There are no miracles. There are also good chemos which are less dangerous. But this therapy can offer a reasonable alternative to chemo in a lot of cases. I know a Gerson foundation in my home country established by two doctors. Both were cancer patients. One of them had melanoma (stage 3 or 4 I do not remember). They both recovered. Not everyone was so lucky. However, they observed what chemo did to patients in general and did not wish to have such a life. Anyone can say anything, skiny (but properly fed) people have a much greater chance to survive. Well-fed individuals who do not move too much because they are sick, take dietary supplements and are cautious not to work too much always end up badly.

    Does anyone know any human trial (no mouse model like forced swimming test) which showed any benefit of antioxidants in CFS? Of course with replicated results. The same applies to other diseases as well because oxidative stress is not CFS specific.

  19. gapsych

    gapsych New Member


    "Forced Mouse Swimming"? Is that a new video game? :O

  20. gapsych

    gapsych New Member

    I have not had a chance to look at antioxidant therapies, however, I did find the following on the Gerson Diet at:

    Here is an excerpt from the article.

    "In a recent review of the medical literature, researchers from the University of Texas MD Anderson Cancer Center identified 7 human studies of Gerson therapy that have been published or presented at medical conferences. None of them were randomized controlled studies. One study was a retrospective review conducted by the Gerson Research Organization. They reported that survival rates were higher than would normally be expected for patients with melanoma, colorectal cancer and ovarian cancer who were treated with surgery and Gerson therapy, but they did not provide statistics to support the results. Other studies have been small, had inconclusive results, or have been plagued by other problems (such as a large percentage of patients not completing the study), making it impossible to draw firm conclusions about the effectiveness of treatment."

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