Creatine is amazing

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Jun 18, 2008.

  1. klutzo

    klutzo New Member

    How many of you have tried taking the amino acid Creatine? It is made into ATP - the gas that powers our cells.

    My annual lab tests have been showing a lower than normal level of it, and I have started to have some muscle wasting, so I finally decided to try it. The results have been amazing.

    For 15 years, I've tried to lift weights and never been able to do it for more than 3 minutes. The highest number of reps I could do was 16 bicep curls, and that was only with four lb. weights. The lactic acid pain and spasming was so bad I would double over crying.

    After only 3 weeks on only 2 grams of creatine each morning, taken with a protein shake in apple juice, I can easily do 50 bicep curls with no after effects. I can exert myself all day long and keep going all day long. I have almost no pain.....just a little in the top of my shoulders, which was always my worst pain area.

    My FMS is due to Lyme Disease, and I still have all of the symptoms from the damage it has caused to my heart, spinal and knee joints, brain, and pancreas, but, I do not seem to have any FMS symptoms since I have been on creatine.

    Creatine should not be taken every day, so I am tapering down now and hope to take it just three days per week, when I exercise. It can cause weight gain, though it should be muscle and I have gained on it, which I did not need. Still, I am doing so much more that it seems worth it.

    For those who want to try it, it must be taken with a non-acidic fruit juice to absorb it properly, and taking it with protein is also good. I make a whey protein shake with apple juice and antioxidant powder each morning and put it in that. Exercisers usually take it right after exercising.

    I wonder if any of you have had low creatine on your lab tests like I did, and if any of you have tried it yet. I think mine may be low since I eat very little meat. Body builders take much higher doses than I am taking, so it does not take much to make a difference.

    Has anyone else gotten these results?

  2. richvank

    richvank New Member

    Hi, klutzo.

    I'm happy to hear that you have gotten such good results from supplementing with creatine.

    You may be interested in the following:

    Creatine, as you mentioned, does come partially from the diet, particularly from meat. However, it is also normally synthesized in the human body, and the synthesis of creatine is one of the top two requirements for methylation, the other being the conversion of ethanolamine to choline. The fact that you were low in creatine suggests that your methylation capacity may be below normal.

    I don't know if you've read about the Glutathione Depletion--Methylation Cycle Block Hypothesis for CFS. If you are interested in the details, there are references in my bio to my papers, available on the internet.

    I suspect that this hypothesis may apply also to at least some cases of chronic Lyme disease and post-Lyme syndrome. I have suggested a treatment based on this hypothesis, described in my post of July 18, 2007. If you search content under "methylation," you will find lots of posts from people trying this treatment. It seems to be helping about two-thirds of the people who try it. No prescriptions, less than $3.00 per day, supplements available from suppliers on the internet.

  3. Waynesrhythm

    Waynesrhythm Member

    Hi Rich,

    I've tried to find this July 18, 2007 thread you mentioned (which I did read last year) but have not been able to find it using the search feature. I searched glutathione depletion, methylation cycle, and then just methylation, and can't seem to locate it. I was going to create a link to it for others to easily access it.

    If you could let me know the name of the post, I could follow through on this. I suspect others may have tried to find it as well, but couldn't. --- I'm continuing to do well with my MMS experiment; will be posting on my MMS thread in the next few days or so.

    Regards, Wayne

    Klutzo -- I've used creatine on and off for a number of years. Lucklily it's just a fraction of the cost it was several years ago. My results have been good, not nearly so dramatic as yours. Congratulations on your good results!
    [This Message was Edited on 06/18/2008]
  4. richvank

    richvank New Member

    Hi, Wayne.

    It's posted below. Since then, reports from physicians using the treatment are that it is producing a positive response in about two-thirds of their patients.


    Updated description of MCB treatment WITH ADVERSE EFFECTS 07/18/07 04:06 PM

    July 18, 2007

    Simplified Treatment Approach Based on the Glutathione Depletion-Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome (CFS)

    Rich Van Konynenburg, Ph.D.

    I first want to note that I am a researcher, not a clinician, and that what I have to say here should not be interpreted as medical advice.

    In January, 2007, in an effort to shed light on the validity of the Glutathione Depletion-Methylation Cycle Block (GD-MCB) Pathogenesis Hypothesis for Chronic Fatigue Syndrome (CFS), and to help clinicians to develop a practical treatment based on this Hypothesis, I suggested a simplified treatment approach. This approach is designed to lift the hypothesized methylation cycle block and to restore glutathione levels to normal. It was derived from a complete treatment program developed by Dr. Amy Yasko, N.D., Ph.D., for autism and other disorders that are also thought to involve methylation cycle block and glutathione depletion.

    A fairly large number of people with chronic fatigue syndrome (PWCs) have since voluntarily chosen to try this treatment approach, many with the help of their physicians. It now appears to be working well for many of these PWCs, but some serious adverse effects have also been reported in a few cases. Controlled testing of this treatment approach has not yet been done, but early results from these volunteers suggest that this would not only be worthwhile in view of indications of the efficacy of this approach, but also necessary to ensure its safe application.

    I would like to describe the history of the Glutathione Depletion-Methylation Cycle Block (GD-MCB) Hypothesis and the simplified treatment approach that is based upon it, and point out what I think the early treatment results mean with regard to this Hypothesis. But before I do so, I want to emphasize the following cautionary statements:

    While in the past I have stated that PWCs should cooperate with their physicians in trying the simplified treatment approach, as a result of experiences with this treatment approach that have been reported to me recently, I have concluded that it must be entered upon only under the supervision of a licensed physician, to make sure that if there are individual issues that arise, they can be taken care of immediately. The treatment approach itself consists only of nonprescription nutritional supplements that are normally found naturally in the body and are necessary for normal biochemistry to take place. It would thus appear to be fairly benign on its surface. However, it is now clear to me that restarting the methylation cycle after it has been blocked for extended periods, particularly in those PWCs whose general health has become quite debilitated, or those who have certain respiratory, cardiac, endocrine or autoimmune conditions, can present some serious challenges and hazards. I suspect that there is still much more to be learned about possible adverse effects of applying this treatment approach among the very heterogeneous CFS population, and this work properly lies in the province of clinicians. I believe that I have now carried this work as far as a nonclinical researcher can appropriately carry it. I am hopeful that clinicians will apply and test this treatment approach in order to learn how it may be safely, effectively, and practically utilized to treat PWCs, and it appears that this is now beginning to occur.

    As some readers will probably be aware, I presented a poster paper describing the above-mentioned Hypothesis at the most recent IACFS conference in Florida last January. It can be found on the internet on Cort Johnson’s website:

    This Hypothesis has not yet been published in the peer-reviewed literature. My emphasis up to now has instead been upon addressing questions that remained to be answered before this Hypothesis could be considered for clinical testing and application in the form of a practical treatment approach.

    The history of the development of this Hypothesis is as follows:

    In 1999, I first learned from two public talks presented by Dr. Paul Cheney that many PWCs are depleted in glutathione, and that taking steps to build glutathione can be helpful to many. Dr. Derek Enlander has since reported to me that he began injecting glutathione as part of a complex into CFS patients as early as 1991. I also found that Dr. Patricia Salvato had reported in early 1998 on her use of intramuscular injection of glutathione in 276 patients. Over the years, quite a few CFS doctors have incorporated means of building glutathione into their protocols, either by administration of glutathione itself by various routes, or by oral supplementation with glutathione precursors, such as whey protein products.

    What is glutathione, and what does it do?

    Glutathione is technically a tripeptide, which can be thought of as being like a very small protein, as it is made up of only three amino acids (while proteins are made up of many more). It is present naturally in every cell of the body, as well as in the blood, the bile and the fluid lining the lungs. The liver is normally the main producer of glutathione in the body. Glutathione plays many important roles in the body. Probably the best known are its protection against oxidative stress produced by oxidizing free radicals and other reactive oxygen species, its support for the immune system, and its role in removing a variety of toxic substances from the body.

    When glutathione becomes somewhat depleted, as it does in many cases of CFS, its normal functions are simply not performed well. Many of the symptoms of CFS as well as observed abnormal results on specialized lab tests can be traced directly to glutathione depletion, as I described in an earlier AACFS poster paper in 2004. It can be found on Cort Johnson’s website:

    As I noted in that paper, while direct efforts to build glutathione are helpful to many PWCs, for most they provide only temporary improvement and do not result in permanent restoration of glutathione levels or a cure for CFS. I suspected that a vicious circle mechanism must be involved in holding down the glutathione levels in CFS.

    Then, later in 2004, an important paper was published involving research into autism by S. Jill James and her coworkers: “Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism”
    (Am J Clin Nutr. 2004 Dec;80(6):1611-7). The study they reported showed that glutathione is depleted also in autism, and that this depletion is associated with a block in what is known as the methylation cycle (or methionine cycle).

    Before discussing this further, I want to address the question “What is the methylation cycle, and what does it do?”

    The methylation cycle is part of the basic biochemistry of the body, and is believed to operate in every cell. This cycle includes the amino acid methionine as well as S-adenosylmethionine (SAMe, used as a supplement by some PWCs), S-adenosylhomocysteine, and homocysteine. Some homocysteine is converted back to methionine, thus completing the cycle. There are two parallel pathways from homocysteine to methionine. They are the methionine synthase pathway and the BHMT (betaine homocysteine methionine transferase) pathway. The methylation cycle is directly linked to the folate metabolism and to the transsulfuration pathway.

    The methylation cycle performs many vital roles in the body. First, by means of SAMe, it supplies methyl (CH3) groups to many different biochemical reactions. Some of them produce substances such as coenzyme Q-10 and carnitine, which have been found to be depleted in many PWCs. Methylation also plays an important role in “silencing” certain DNA to prevent its expression, and in producing myelin for the brain and nervous system.

    The methylation cycle also controls the body’s response to oxidative stress, by governing how much homocysteine is diverted into the transsulfuration pathway, which contributes to determining the rate of synthesis of glutathione.

    A third important role of the methylation cycle is to control the overall sulfur metabolism of the body. In this role, besides controlling glutathione synthesis, it exerts control over synthesis of several other important substances, including cysteine, taurine and sulfate.

    When the methylation cycle is blocked at the enzyme methionine synthase, these important roles are not carried out properly. In addition, a methylation cycle block necessarily causes a block in the folate metabolism, to which it is intimately linked, and this interferes with synthesis of new DNA and RNA, among other important effects.

    Two of the most significant effects of a methylation cycle block are that neither the immune system nor the detox system can operate properly. If the methylation cycle remains blocked for an extended period of time, infections and toxins can be expected to build up in the body.

    After I read the paper by S. Jill James and her coworkers (referred to above), I began to suspect that the genetic factors and biochemical mechanism they had found in autism are the same or similar to those important in CFS. A block earlier than glutathione in the sulfur metabolism, at the methylation cycle, could explain the persistent glutathione depletion in CFS. It began to dawn on me that other aspects of CFS that did not appear to be explained by glutathione depletion per se could be explained by a methylation cycle block.

    It was difficult for me initially to believe that there was a connection between autism and CFS, given the profoundly different symptoms and different affected population groups (primarily boys in autism, compared to primarily adult women in CFS). However, I knew of others who had publicly suggested such a connection in the past (Dr. Michael Goldberg in the U.S. and Prof. Malcolm Hooper in the UK), and this new study seemed to provide more detailed evidence of this connection at the genetic and biochemical levels.

    I began to look into autism in more detail, and I attended the Long Beach conference of the Defeat Autism Now! (DAN!) project in October of 2005. The more I learned about autism, the more I became convinced that are dealing in CFS with many of the same issues at the genetic and biochemical levels. The book by Drs. Jon Pangborn and Sidney Baker entitled “Autism: Effective Biomedical Treatments” (Autism Research Institute, September, 2005) provides excellent explanations of the biochemistry of autism, and the parallels with CFS can be seen there.

    I want to emphasize that I did not develop the Glutathione Depletion--Methylation Cycle Block Hypothesis out of thin air. The autism researchers had already provided a convincing basis for this model in that disorder. S. Jill James and coworkers did much of the clinical work that underlies it. Richard Deth and his coworkers had worked out much of the theory of the methylation cycle block and had applied it to autism. Professors James and Deth had been presenting talks on their work at autism conferences. The physicians in the DAN! project (as well as Dr. Amy Yasko, though I had not yet learned of her work when I began to understand the importance of the methylation cycle block) had already been treating autism cases by measures intended to lift the methylation cycle block. What I did was to apply the results of their work to CFS, and to present a detailed biochemical and symptomological case to support the proposition that this model also applies to CFS.

    What is the essence of the Glutathione Depletion-Methylation Cycle Block Hypothesis for the Pathogenesis of CFS?

    This hypothesis proposes first that in order to develop CFS, a person must have inherited genetic variations (also called SNPs or single-nucleotide polymorphisms) in a combination of certain genes that code for enzymes and other proteins associated with the methylation cycle and related pathways.

    The hypothesis further proposes that the person must also be subjected to some combination of a variety of long-term physical, chemical, biological or psychological/emotional stressors that lowers glutathione levels to the point that a block occurs in the enzyme methionine synthase in the methylation cycle, in response to the oxidative stress that is inherent in glutathione depletion. The formation of this block is aided by the presence of the inherited genetic polymorphisms. This lowering of glutathione levels also simultaneously removes the normal protection that glutathione provides to vitamin B12 and allows the accumulation in the body of toxins that can interfere with the utilization of vitamin B12, mercury perhaps being the dominant one.

    This hypothesis further proposes that the result of the above is that the level of methylcobalamin is held too low to support the methionine synthase reaction, and it therefore becomes chronically blocked. This produces a vicious circle mechanism that causes CFS to become a chronic condition.

    Finally, this hypothesis proposes that all the features of CFS can be shown to originate from this root cause. While I have not yet demonstrated this for every feature of CFS, the first paper cited in this article explains a large number of them in detail on this basis. Previous treatments for CFS have dealt with downstream issues in the pathogenesis, but they have not completely addressed this root cause, and, in my opinion, that is we have not seen many completely cured CFS cases up to now. Note that when I refer to cured cases, I do not mean that the genetic predisposition has been removed, but that that the PWCs are healthy from the symptomatic point of view.

    As I became more convinced of the parallels between autism and CFS, I began to point out this connection to some clinicians directly and to others via the internet, as well as to PWCs in internet groups, and I began encouraging them to consider the treatments that were being used by the Defeat Autism Now! project to treat autism, focusing on unblocking the methylation cycle. A small number of PWCs tried this approach, and while some initial benefits were observed from this, it did not seem to be an effective approach over the long term, at least in the way I was suggesting that it be applied.
    I then learned of the work of Dr. Amy Yasko, N.D., Ph.D. in autism. I studied her materials, including the book written by her and Dr. Garry Gordon entitled “The Puzzle of Autism,” joined her discussion forum at
    and eventually attended her teaching seminar in Boston in October of 2006. After considering all of this, I concluded that it was likely that her treatment approach could help many PWCs, so I decided to emphasize it. An important feature of her work is her effort to tie the genetics of individuals to the biochemistry and to do tailored treatment based on genetics, again directed toward correcting the methylation cycle block, but also incorporating support for a variety of body systems and organs. I also learned that Dr. Yasko had had some experience in using her approach in cases of CFS as well as a variety of adult neurological disorders, but that she was currently focusing primarily on autism.

    I wrote a short article pointing out the connection I was seeing between autism and CFS and pointing to these treatments, and it was published in the October 2006 issue of the Townsend Letter. This can be found at the following url:

    Quite a few PWCs acted on my suggestion to try Dr. Yasko’s full treatment approach, and they are currently continuing with it. Many of them participate in the Yahoo cfs_yasko internet group, a group that was specifically formed for them, which can be found at

    Most of them are currently in the first step of this treatment approach, and they are generally reporting that this treatment is producing considerable detoxification of their bodies, as monitored by urine testing. The full Yasko treatment approach involves detailed genetic and biochemical testing, and is rather expensive and complex. While some PWCs are in a position to pursue this treatment and appear to be doing so successfully, it seemed to me that there are many others for whom this approach is beyond reach, either for economic or cognitive reasons or both. Practicing physicians have generally also found this treatment to be somewhat cumbersome to incorporate into their practices because of the complexity and the considerable time and expense required to tailor the treatment to each individual patient.

    In response to these issues and to requests from clinicians for a written description of practical CFS treatment based on this hypothesis, I wrote an article that outlined the full Yasko treatment approach, but also described a simplified treatment approach that incorporated nutritional supplements that form the core of Dr. Yasko's so-called "step 2." This is the step in her treatment program that involves actually lifting the block in the methylation cycle. This article can be found on Cort Johnson’s website:

    When I proposed this approach, I did not know what fraction of the PWC population would be able to tolerate the resulting die-off of pathogens and mobilization of toxins that would result from the consequent ramp-up of the immune system and the detox system after they had been dysfunctional for such long times during the long illness duration of many PWCs. As can be seen in the above-cited article, I was not very optimistic. However, I still thought it was worth a try, since the existing full Yasko approach did not seem to have the characteristics necessary for wide use in the CFS community, and it appeared that lifting the methylation cycle block was the key to recovery for many PWCs. With the help of a woman (name omitted to protect her privacy) who is currently receiving the full Yasko treatment herself, I selected a basic set of seven supplements from Dr. Yasko's step 2, as discussed in the above-mentioned article.

    After this article was presented on the internet, another woman (name omitted to protect privacy) decided to try this simplified treatment approach. As a result of benefits that occurred almost immediately, she reported her experience on the CFS discussion board. In response to her reports, others began to try this approach. This began in February of 2007, and the number of people on this treatment has continued to grow, the longest duration of treatment now being somewhat more than four months, ranging down to some as short as a few days.

    As experience has been gained, I have shortened the initial list of seven supplements in the suggested simplified treatment approach to five, as described below. The cost of the basic five supplements is somewhat more that two dollars per day.

    After suggesting this treatment approach, I initially attempted to maintain a list of those who were trying it, based on reports I received from physicians and individual PWCs. However, when the number of people I was aware of grew past 60, I no longer felt that I could maintain a complete count. Many have been reporting their progress periodically to the ImmuneSupport board, and a new Yahoo group also has been established recently for PWCs trying this approach, at the following url:

    I will now describe the current version of the simplified treatment approach based on the Glutathione Depletion--Methylation Cycle Block Hypothesis.

    All the supplements used in this approach can be obtained from the site, or all but the Complete Vitamin and Neurological Health Formula can be obtained elsewhere. Please note that I have no financial interest in any of the supplements that I have suggested in the simplified treatment approach.

    As I mentioned above, these supplements and dosages have been selected by Dr. Amy Yasko as part of her complete treatment approach, as described in her book "The Puzzle of Autism." Substitutions or changes in dosages may not have the same effect as the combination of supplements and dosages suggested, although it is wise to start with smaller dosages than those given below, and it is also wise to start with one supplement at a time and work up to the total of five supplements, to test carefully for adverse effects. It will take somewhat longer to reach the suggested combination and dosages by this route, but early experience has shown that this is prudent.

    As I also mentioned above, this treatment approach should be attempted only under the supervision of a licensed physician, so that any individual issues that arise can be properly dealt with. It's important to "listen to one’s body" when doing this treatment. If the detox becomes too intense to tolerate, or if significant adverse effects appear, as described below, the supplements should be discontinued, and the situation should be evaluated immediately by a licensed physician. This treatment will produce die-off and detox symptoms as the immune system and detox system come back to normal operation and begin ridding the body of accumulated infections and toxins. This appears to be inevitable, if health is to be restored. It may require considerable judgment and clinical experience on the part of the physician to distinguish between inevitable die-off and detox symptoms and possible adverse effects.

    While die-off and detox symptoms are occurring, there will also likely be improvement in CFS symptoms over time. The intensity of the expected die-off and detox symptoms can be decreased by lowering the dosages of the supplements. These symptoms probably result from the body’s limited rates of excretion of toxins. If toxins are mobilized more rapidly than they can be excreted, their levels will rise in the blood, and it is likely that this will produce more severe die-off and detox symptoms. By lowering the dosages, and thus slowing the rate of mobilization of toxins, their levels in the blood can be lowered, thus ameliorating the symptoms.

    The temptation to try to get better faster by increasing the dosages suggested by Dr. Yasko must be resisted. In particular, the suggested dosages for the FolaPro and the Intrinsi/B12/folate supplements should not be exceeded. Some who have done this have experienced very unpleasant levels of detox symptoms that had momentum and did not decrease rapidly when the supplements were stopped.

    As improvements in energy level and cognition occur, it is tempting for PWCs to overdo activities, which, early in the treatment, can still result in “crashing.” It is wise to resist this temptation as well, because complete recovery will not occur overnight with this treatment approach.

    I am not aware of negative interactions between the five basic supplements and prescription medications used by physicians in treating CFS. However, this treatment approach should not be attempted without considering together with a licensed physician possible interactions between the supplements included in it and any prescription medications that are being taken. This is particularly important if addition of SAMe to the basic five supplements is contemplated.

    When this treatment approach is used together with prescription medications, a licensed physician must be consulted before discontinuing any prescription medications. Some of them can cause very serious withdrawal symptoms if stopped too abruptly.

    If this treatment approach is begun by a PWC who is taking a thyroid hormone supplement for a hypothyroid condition, the PWC and the supervising physician should be alert to the possibility that HYPERthyroid symptoms, such as palpitations and sweats, can occur, even very soon after starting this treatment. The physician should be consulted about possibly adjusting or eliminating the thyroid hormone supplementation if this occurs.

    Here are the five supplements, as found in Dr. Yasko’s book “The Puzzle of Autism,” (p. 49) and as described in detail on her website :

    1. One-quarter tablet (200 micrograms) Folapro (Folapro is 5-methyl tetrahydrofolate, an active form of folate, which is sold by Metagenics with a license from Merck, which holds the patent on synthesis).

    2. One-quarter tablet Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, also known as folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor)

    3. Up to two tablets (It’s best to start with one-quarter tablet and work up as tolerated) Complete Vitamin and Ultra-Antioxidant Neurological Health Formula from Holistic Health Consultants (This is a multivitamin, multimineral supplement with some additional ingredients. It does not contain iron or copper, and it has a high ratio of magnesium to calcium. It contains antioxidants, some trimethylglycine, some nucleotides, and several supplements to support the sulfur metabolism.)

    4. One softgel capsule Phosphatidyl Serine Complex (This includes the phospholipids and some fatty acids)

    5. One sublingual lozenge Perque B12 (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract)

    The first two supplement tablets are difficult to break into quarters. One of the PWCs who is following the simplified treatment approach has suggested that an alternative approach is to crush them into powders, mix the powders together, and divide the powders into quarters using a knife or single-edged razor blade and a flat surface. The powders can be taken orally with water, with or without food, and do not taste bad.

    Some people have asked what time of the day to take the supplements. A few have reported that the supplements make them sleepy, so they take them at bedtime. If this is not an issue, they can be taken at any time of the day, with or without food.

    Since some questions have been asked about which components of this treatment approach are essential, and since some PWCs appear to be taking augmented versions of the simplified GD-MCB treatment approach that I wrote about in my January treatment paper (cited above), I want to offer some comments to help PWCs and their physicians to evaluate which supplements to include in treatment.

    FolaPro--This is included because many PWCs have a genetic polymorphism in their MTHFR (methylene tetrahydrofolate reductase) enzyme that affects the production of 5-methyltetrahydrofolate (which is identical to the product FolaPro). This form of folate is the one used by the methionine synthase enzyme, which is the enzyme that appears to be blocked in many cases of CFS. If PWCs were to have their genetics characterized, as in the full Yasko approach, they would know for sure whether they needed this supplement, but in the simplified approach I suggest simply giving it to everyone. This should not present problems, because the total folate dose, including the FolaPro and the folates in the Intrinsi/B12/folate supplement, amounts to 400 micrograms per day, which is within the upper limit for folate supplementation for adults and for children four years of age and older, as recommended by the Institute for Medicine of the U.S. National Academy of Sciences.

    Intrinsi/B12/folate--This supplement contains three forms of folate--FolaPro, folinic acid (identical to the drug leucovorin) and folic acid (the most common commercial folate supplement). It also has some cyanocobalamin (the most common commercial vitamin B12 supplement) and some intrinsic factor (identical to that normally secreted by the stomach to enable vitamin B12 absorption by the gut) as well as some other things. The folinic acid is helpful because some people can't use ordinary folic acid well, as a result of genetic issues. Also, this helps to supply forms of folate that will make up for the low tetrahydrofolate resulting from the block in methionine synthase, until this is corrected. This enzyme normally converts 5-methytetrahydrofolate to tetrahydrofolate, which is needed in other reactions. This supplement also has some intrinsic factor and some cyano-B12 to help those who have a type of pernicious anemia that results from low production of intrinsic factor in the stomach and which prevents them from absorbing B12 in the gut. Vitamin B12 is needed by the enzyme methionine synthase, in the form of methylcobalamin, but this supplement has cyanocobalamin, which must be converted in the body by glutathione and SAMe to form methylcobalamin. As glutathione and SAMe come up, this should become more effective.

    Complete Vitamin and Ultra-Antioxidant Neurological Health Formula--This is Dr. Amy Yasko's basic high-potency general nutritional supplement. This is a general foundation for the biochemistry of the body. I suspect that this supplement is better for PWCs trying the simplified treatment approach than other high-potency general nutritional supplements, because it has particular things needed for dealing with a methylation cycle block, including some TMG and sulfur metabolism supplements as well as nucleotides. It is also high in magnesium and low in calcium, and has no iron or copper. As far as I know, there are no other supplements with all these characteristics. I therefore believe that this supplement is important for use in the treatment approach. The TMG helps to stimulate the BHMT pathway in the methylation cycle, and that helps to build SAMe, which is needed by the parallel methionine synthase pathway. The nucleotides will help to supply RNA and DNA for making new cells until the folate cycle is operating normally again.

    Phosphatidylserine complex—This contains various phosphatidyls and fatty acids, which will help to repair damaged membranes, including those in cells of the brain and nervous system. It should help with the cortisol response. It also has some choline, which can be converted to TMG (betaine) in the body, to help stimulate the BHMT pathway.

    Perque B12--This is sublingual hydroxocobalamin. The dosage is fairly large, in order to overcome the blocking of B12 by toxins such as mercury in CFS. As I mentioned above, B12 is needed to stimulate the activity of methionine synthase. Methylcobalamin is actually the form needed, but some people cannot tolerate supplementing it for genetic reasons, and I'm also concerned that people with high body burdens of mercuric mercury could move mercury into the brain if they take too much methylcobalamin. Methylcobalamin is the only substance in biological systems that is known to be able to methylate mercury. (Note that methylcobalamin is the substance used by bacteria to perform methylation on environmental mercury, and the resulting methylmercury is concentrated in the food chain up to the large predatory fish and enters the human diet.) Methylmercury can readily cross the blood-brain barrier. Methylation of mercury by methylcobalamin has been reported in the literature to occur within the bodies of guinea pigs in laboratory experiments. Perque B12 is sublingual to compensate for poor B12 absorption in the gut of many people.

    There are also two other supplements that were included in the earlier version of the simplified approach:

    SAMe--This is normally part of the methylation cycle. Depending on genetic variations (SNPs or polymorphisms) some PWCs can't tolerate much of this, and some need more. If PWCs can't tolerate this, they should leave it out, because stimulating the BHMT pathway, using TMG and choline in the other supplements, will probably make enough SAMe for them naturally. For people who can tolerate SAMe, a dosage of 400 mg per day is suggested.

    Methylation Support RNA Formula--This is a mixture of RNAs that is designed to help the methylation cycle. It is somewhat expensive, and is not essential, but is helpful if people can afford it. Dr. Amy Yasko has since advised me that if a PWC desires to take only one of her RNA Products, she would suggest choosing either the Health Foundation RNA Formula or the Stress Foundation RNA Formula, rather than the Methylation Support RNA Formula, as being most helpful to take the edge off the detox.

    The above suggested list of supplements may not be optimum, and future clinical studies may produce an improved protocol. I think that the forms of folate and B12 are probably essential, because they target what I believe is the root issue in the abnormal biochemistry of CFS. I think the Complete supplement is important to support the general biochemistry and to correct deficiencies that might be present in essential nutrients, as well as to support the methylation cycle and the rest of the sulfur metabolism. I think that some way of stimulating the BHMT pathway is important, also, to bring up SAMe, and the phosphatidyl serine complex provides this, as does the TMG included in the Complete supplement.

    With regard to possible interactions between the supplements in the simplified treatment approach and other supplements that PWCs may be taking, I am aware of two: (1) I would not recommend taking additional folate beyond what is suggested above, since the various forms of folate compete with each other for absorption, and it is important to get enough of the active forms into the body. Also, it is important not to take too much folate, as mentioned above, because this can cause the detox to develop a momentum, so that it will take some time to slow it down if you want to do that. (2) I would also not recommend taking additional trimethylglycine (TMG, also called betaine) or additional forms of choline, such as phosphatidylcholine or lecithin, since that may stimulate the BHMT pathway too much at the expense of the methionine synthase pathway. The betaine-HCl used to augment stomach acid is something that may have to be omitted while doing this treatment, too, since it will contribute to this stimulation.

    Adding glutathione support will help some people, as will adding molybdenum.
    As more things are added, though, one is moving toward the full Yasko approach, which is more complicated and expensive. If this is done, I recommend that it be done with the guidance of Dr. Yasko and under the supervision of a personal physician. The simplified treatment approach appears to work well by itself for many PWCs, but others may find that the die-off and detox (or even adverse effects) from this approach used by itself are too severe. In those cases, the PWCs could consult “The Puzzle of Autism,” sold on, to consider together with their doctors what else discussed there might help them. If the simplified approach seems to help to some degree, and it captures one’s attention for that reason, but it still either does not accomplish all that is desired, or it is not tolerated, then perhaps the next step would be to consider the full Yasko treatment. At least then there would be stronger motivation to look into it. Otherwise, it can appear very daunting to many PWCs.

    The reported responses to this treatment approach have mainly involved a combination of two categories of effects: (1) improvements in some of the common CFS symptoms (some of them quite rapid and profound), and (2) intensification or initial appearance of a variety of symptoms that appear to result from increased detoxification and immune system attack on infections. The former are most welcome, and they are what continue to motivate the people on this treatment, in the face of the detox and die-off symptoms, which are unpleasant but appear to be inevitable, given the large body burdens of toxins and infections that many PWCs have accumulated during their illness, lacking adequate detox capability and cell-mediated immune response during that time.

    In addition to these main responses, a few PWCs have reported adverse effects, some of them quite serious. These are discussed below. A few of those who have started the treatment have stopped it for various reasons, including adverse effects. Some have taken breaks from the treatment and have then returned to it or are planning to do so.

    While this informal testing of the simplified treatment approach currently is not being carried out in a controlled fashion, and while not all the PWCs trying it are using the complete suggested complement of supplements, it is nevertheless possible to state that the treatment appears to be working for quite a few PWCs, though not all.

    The following symptoms of CFS have been reported to have been corrected by various PWCs on this treatment. Note that these are gathered from reports from many PWCs, so that not all have been reported by a single person.

    1. Improvement in sleep (though a few have reported increased difficulty in sleeping initially).
    2. Ending of the need for and intolerance of continued thyroid hormone supplementation.
    3. Termination of excessive urination and night-time urination.
    4. Restoration of normal body temperature from lower values.
    5. Restoration of normal blood pressure from lower values.
    6. Initiation of attack by immune system on longstanding infections.
    7. Increased energy and ability to carry on higher levels of activity without post-exertional fatigue or malaise. Termination of “crashing.”
    8. Lifting of brain fog, increase in cognitive ability, return of memory.
    9. Relief from hypoglycemia symptoms
    10. Improvement in alcohol tolerance
    11. Decrease in pain (though some have experienced increases in pain temporarily, as well as increased headaches, presumably as a result of detoxing).
    12. Notice of and remarking by friends and therapists on improvements in the PWC's condition.
    13. Necessity to adjust relationship with spouse, because not as much caregiving is needed. Need to work out more balanced responsibilities in relationship in view of improved health and improved desire and ability to be assertive.
    14. Return of ability to read and retain what has been read.
    15. Return of ability to take a shower standing up.
    16. Return of ability to sit up for long times.
    17. Return of ability to drive for long distances.
    18. Improved tolerance for heat.
    18. Feeling unusually calm.
    19. Feeling "more normal and part of the world."
    20. Ability to stop steroid hormone support without experiencing problems from doing it.
    21. Lowered sensation of being under stress.
    22. Loss of excess weight.

    The following reported symptoms, also gathered from various PWCs trying this simplified treatment approach, are those that I suspect result from die-off and detox:

    1. Headaches, “heavy head,” “heavy-feeling headaches”
    2. Alternated periods of mental “fuzziness” and greater mental clarity
    3. Feeling “muggy-headed” or “blah” or sick in the morning
    4. Transient malaise, flu-like symptoms
    5. Transiently increased fatigue, waxing and waning fatigue, feeling more tired and sluggish, weakness
    6. Dizziness
    7. Irritability
    8. Sensation of “brain firing: bing, bong, bing, bong,” “brain moving very fast”
    9. Depression, feeling overwhelmed, strong emotions
    10. Greater need for “healing naps.”
    11. Swollen or painful lymph nodes
    12. Mild fevers
    13. Runny nose, low grade “sniffles,” sneezing, coughing
    14. Sore throat
    15. Rashes
    16. Itching
    17. Increased perspiration, unusual smelling perspiration
    18. “Metallic” taste in mouth
    19. Transient nausea, “sick to stomach”
    20. Abdominal cramping/pain
    21. Increased bowel movements
    22. Diarrhea, loose stools, urgency
    23. Unusual color of stools, e.g. green
    24. Temporarily increased urination
    25. Transiently increased thirst
    26. Clear urine
    27. Unusual smelling urine
    28. Transient increased muscle pain

    Finally, the responses reported below are more serious, and I would classify them as adverse effects of the treatment. This list includes all the adverse effects of which I am aware at the time of writing this article, but I suspect that as more PWCs try this treatment with the assistance of their physicians, this list will grow. I am describing these as they have been reported on the ImmuneSupport CFS discussion board by the PWCs who experienced them. Though this information may be incomplete, and cause—effect relationships are difficult to determine exactly from the available information, I’m hopeful that it will be helpful to clinicians and other PWCs:

    1. One person had had a history of severe pesticide exposure and also autonomous multi-nodular goiter, which she described as follows: “Gradually the right lobe grew to over 4 cm x 4cm, and had to have right lobe out. . . This same surgeon made the decision to leave the left lobe in, as I had always had trouble with thyroid med back then too. So, they restarted my Synthroid and I stayed on that for [a] few more years. I ALWAYS had shortness of breath and became VERY tachycardic upon ANY activity. . .” This person started the simplified treatment approach on March 21, 2007 (actually using higher dosages than suggested for FolaPro and Intrinsi/B12/folate). On May 19, she went to an emergency room with tachycardia, chest pain, trouble breathing, trouble sleeping, elevated blood pressure and fever of 100.7 F. She was admitted to the hospital and released the next day. No evidence was found for heart attack. This person later reported the following: “I followed up with my PCP and had CT scan of neck and chest and my goiter is causing tracheal compression, again, and breathing is VERY hard. . . My area hospitals can't do this surgery because my goiter grows substernal, deep in my chest.” This person has expressed a desire to continue the simplified treatment approach, but is currently exploring the possibility of first having additional surgery on the multinodular goiter.

    2. A second person had a history of lung problems due to both carbon monoxide exposure and exposure to molds, as well as heart-related symptoms. She started part of the simplified treatment approach on May 27, 2007. After having been nearly homebound for ten years, she was able to begin riding a bicycle. However, in early July, 2007, she went to an emergency room twice with severe breathing problems (shortness of breath), a fever of 99.8 to 100.1 F. that eventually lasted for sixteen days, and severe chest and left arm pain. No evidence was found for heart attack. She was diagnosed with an enlarged left atrium and diastolic dysfunction. She has currently discontinued the simplified treatment approach and is under the care of cardiologists.

    3. A third person had a history of autoimmune disease, including Sjogren’s syndrome. After her fourth dosage of combined FolaPro and Intrinsi/B12/folate, she experienced “a moderately severe autoimmune flare, with numerous joint and soft tissue issues, fatigue, pain, etc.” She also experienced a severe flare of Sjogren’s syndrome, with “very dry mouth, dry eyes, and severe eye pain.” Six days after discontinuing the supplements, she had a thorough ophthalmology workup and was diagnosed with autoimmune scleritis. She has been given topical steroids and has reported that her eyes are greatly improved.

    4. At least two persons experienced a temporary termination of peristalsis of the gut and consequent constipation after beginning the simplified treatment approach. In these two cases, induction of diarrhea cleared material from the gut, but did not restore the peristalsis. In both cases, peristalsis restarted twelve days after terminating the folate-containing supplements. One of these persons had a history of treatment with psychotropic drugs, including Klonopin. About 18 hours after starting to get relief from the constipation, she became very sick, with “vomiting, vise-like headache, and shaking.” She had many bowel movements over a ten-hour period, and then began to feel better. The other had a history of autoimmune diseases, including Sjogren’s syndrome and Autoimmune Ovaritis, as well as diastolic dysfunction.

    There are many questions remaining to be answered about this treatment approach, including the following:

    1. For which PWCs would this be an appropriate treatment approach?
    2. For what fraction of the entire PWC population will this treatment approach be beneficial?
    3. How can PWCs who are likely to experience adverse effects from this treatment approach be identified beforehand, so that these effects can be avoided?
    4. Are there PWCs who are too debilitated to be able to tolerate the detoxing and die-off processes that result from this treatment approach, and if so, will the full Yasko treatment approach be suitable for them?
    5. Will the simplified treatment approach actually lead to continuing improvements over longer times for those who find it beneficial, all the way to cured cases?
    6. Will the simplified treatment approach be effective in cases of "pure fibromyalgia" as it appears to be in many cases of CFS?
    7. How can this treatment approach be further improved?

    And many more.

    However, the results to date seem encouraging. I suspect that many PWCs can be helped by this treatment approach or something similar to it. I also believe that the appearance of improvement in such a wide range of CFS symptoms when this treatment approach is used provides evidence that a block in the methylation cycle does in fact lie at the root of the biochemical and physiological derangements found in many PWCs, or very near to it. The wide range of symptoms that appear to be associated with die-off and detox appear to give evidence that this treatment is in fact stimulating more normal operation of the immune and detox systems.

    I want to reiterate what I wrote near the beginning of this article: This treatment approach must be entered upon only under the supervision of a licensed physician, to make sure that if there are individual issues that arise, they can be taken care of immediately. The treatment approach itself consists only of nonprescription supplements that are normally found naturally in the body and are necessary for normal biochemistry to take place. It would thus appear to be fairly benign on its surface. However, it must be pointed out that restarting the methylation cycle after it has been blocked for extended periods, particularly in those PWCs whose general health has become quite debilitated, or those who have certain respiratory, cardiac, endocrine or autoimmune conditions, can present some serious challenges. I believe that there is still much more to be learned about the possible hazards of applying this treatment approach to the very heterogeneous CFS population, and this work properly lies in the province of clinicians. I am not a licensed physician, but a researcher. I believe that I have carried this work as far as a researcher can appropriately carry it. I am hopeful that clinicians will further test this treatment approach in order to learn how it may be safely, effectively, and practically utilized to treat PWCs, and it appears that this is now beginning to occur.

    I also hope that physicians or their patients who decide to try this treatment approach will let me know how it works for them, though I may not be able to answer all the emails I receive, as their volume is growing.

    Rich Van Konynenburg, Ph.D.
    Independent Researcher and Consultant

  5. klutzo

    klutzo New Member

    Yes, I have read much on methylation, including Rich's papers, and am watching to see how two friends of mine do on the Yasko Protocol before considering trying it.

    Meanwhile, I am an old pro at using various things, and studied to be a Naturopath for over two years. I have over 22 years of untreated Lyme, due to ABX allergies, so I have developed some serious problems.

    Here is my situation re: methylation supps. and glutathione:

    1. I take 2,500 mgs. L-glutamine daily on an empty stomach in the am. This is to hopefully correct a precancerous growth in my stomach. Stomach CA killed my dad and granddad. L-Glutamine also increases growth hormone and it raises Glutathione. I am careful to keep the dose below where it started making me worse, ie. converting to Glutamic acid.

    2. Both my folate and B12 levels continually test above the normal range, and I've been warned to cut back on supps., as the very high folate esp. may be too hard on my kidneys.

    3. Long trials of Phos. serine, SAMe and RNA did nothing for me except empty my wallet.

    Because of that, I was very confused as to whether I had over or under methylation, and was hoping the L-Glutamine alone would raise my glutathione. I think one major reason many of us are so depleted in glutathione is because we take pain killing products containing acetaminophen.

    I take nothing for pain, ever since I entered stage III of Lyme Disease. It is now attacking my brain ,and the brain has no nerve endings. This enabled me to quit taking narcotics about 10 years ago.

    I am not dismissing this protocol at all....I am merely waiting to see how others do, rather than spend money I do not have. I also have a terminal dx now; chronic pancreatic insufficiency, most likely caused by Lyme, since I do not drink alcohol, so in my case, I doubt that anything I try to fix this methylation problem is going to change the outcome as to how long I live.

    I only tried creatine to see if I could function better, since I must do some driving and run a corporation for my DH, no matter how ill I am.

    Thanks again for the info, and Wayne, I am glad the creatine also helped you.
  6. marti_zavala

    marti_zavala Member

    I also have a terminal dx now; chronic pancreatic insufficiency, most likely caused by Lyme, since I do not drink alcohol, so in my case, I doubt that anything I try to fix this methylation problem is going to change the outcome as to how long I live.

    is chronic pancreatic insufficiency a terminal disease? I have it also and no one has spoken about life expectancy with me.

    i do not drink alcohol and never did really (little in college). It seems to be familial but it triggered when i had a relapse in 2003.

    Please share any information with me as i would rather know than not know.

  7. klutzo

    klutzo New Member

    Hi Marti,
    I am not surprised. Doctors don't tell us much these days,and don't seem to care much either. Their waiting rooms are packed, and one patient less is no sweat off their backs. I am no fan of docs after all these years of misdiagnosis, mistreatment and disrespect. If they had caught my pancreatitis early this would not be happening, but they ignored what I told them for over a decade. I worked very hard to stay alive with Lyme, only to have this happen, and I am very bitter.

    You can look it up yourself on Google and read medical articles like I did. Most of the info I found was about dogs, so you will have to sift through that to find the stuff on humans. Here are the basics of what I learned:

    It will cut your life span by 1/5, and is considered "serious, incurable, and irreversible". It gives you a 60% chance of developing brittle, injected insulin dependent diabetes, and a higher chance of pancreatic cancer and cancer of the areas around the pancreas. The ten yr. survival rate is 45%.

    Not being a drinker lowers the chances of diabetes. If you are "lucky" enough to have tons of serious allergies like I do, that dramatically reduces your risk of pancreatic cancer, though they do not know why yet...I suspect an overative immunity at work.

    As you have probably discovered by now, the prescription enzymes don't work very well, even at maximum doses, and a low fat diet is mandatory, but what docs don't tell you is that it is not healthy to eat almost no fat. Your brain is 60% fat for example, and you need fat to make hormones. But, every time you eat fat, you are helping to destroy the small amt. of your pancreas that is left, since it is having to work much too hard.

    If, like me, you also need to take a PPI drug (I take Prilosec) to make the enzymes work properly, then you are in the end stages of the disease, as this is considered a last ditch attempt to boost the effect of the enzymes at aiding fat absorption. Taking PPI's for just one year increases your risk of a fractured bone by 44%, since it makes it much harder to absorb calcium. I assume you've had fecal fat tests to make sure your enzymes are working.

    By the time you start having symptoms, over 90% of your pancreas has already been destroyed. The second most common cause of this, after alcoholism, is gallstones blocking the ducts, causing enzymes to back up in to the pancreas and consume it.

    I had normal gallbladder tests for years, and doctors would not listen when I told them I had horrible chills with my stomach pain attacks, because I was not running a fever. That is why nobody ever considered pancreatitis. They looked for elevated enzymes, typical with gallbladder problems. Instead, my lipase was on the borderline of beng too low, which should have clued them in.

    Eventually, they took out my gallbladder anyway and found tons of stones in it, despite all those normal ultrasound and HIDA tests. Lyme Disease patients run below normal temps, and a normal temp IS a fever in Lyme, but docs would not listen to me, since I was just a stupid patient.

    My mom died of malabsorption at age 60, and I am 57. The genetic form of this disease appears between ages 10-20, so that is not the reason. My mom was an alcoholic, which no doubt caused her problem, but the result was the same, so I have seen how this thing ends up. She weighed 65 lbs. when she died, and was bedridden for the entire last two years of her life.

    My doctor tells me we have much better drugs now, so that I may last far longer than that, and may end up dying from some other aspect of my damage from Lyme, and I sure hope so, because I don't want to go slowly like my mom did.

    There may be new and encouraging research that I did not find, and if so, please post it! I am only reporting what I found when I searched. I would love to hear some better news.

  8. marti_zavala

    marti_zavala Member

    i started doing research since i posted and have found some interesting information. not conclusive yet, still looking.

    first, do you feel that pancreatice insufficiency is the same thing as chronic pancreatitis?

    the research i have found suggests that they are the same thing so i wondered your thoughts.

    this is the most useful website so far. most discussion is on alcoholic panc. insuff.

    "What is the life expectancy for someone with chronic pancreatitis?

    The life expectancy is not changed just because of chronic pancreatitis. "

    life expectancy that i have seen discussed was related to alcohol PI and cystic fibrosis.

    i have had severe chronic pancreatitis for 4 years now. Not had much doctors help with it at all. heading in to see gastroenterologist in july for checkup.

    i ended up having an epidural root block for some unrelated back issues and the root block actually worked on the nerve heading to the pancreas which completely eliminated my pain. i thought my pancreatitis was resolved but as the root block is wearing off, i realize that it has not resolved and that i have been doing damage by eating a more normal diet. sigh....

    so the next time I have a root block, i will ask if they will not do that nerve (which unfortunately is where I have most of my nerve pain.)

    Sorry to hear about your mom. My dad was an alcoholic and he also died with very low weight. His issues were colon cancer.

    I will keep looking and post more info when I find something useful.
  9. spacee

    spacee Member

    I am very happy for your progress. I too am considering Rich's protocol...if the time comes. I am too "well" for the family to be willing for me to detox for a while.

    High V D levels reduces the incidence of digestive cancers. I just learned that this week. I have high levels. But I don't take Vit D but I had been taking some fish oil.

    I read this researching high Vit D levels. In other aspects it isn't good to have high Vit D since it can do the same as low Vit D.

    Just wanted to let you know...

  10. klutzo

    klutzo New Member

    Yes, I was confused too, but it seems that chronic pancreatitis and chronic pancreatic insufficiency are the same thing. My pain was never that bad, so I was surprised to hear that, having heard that pancreatitis is very painful.

    That info you found saying life expenctancy is normal is great. it does not fit all the stuff I read, but I will definitely check it out. I am seeing my GI doc this week and will ask him too. We are making some major life decisions right now, and that will figure into it.

    If it turns out not to be so dangerous to malabsorb, I may ask my GI doc if I can cut my drugs, since I have gained so much weight since I started taking them. I was already too heavy and maybe a little malabsorption would help me re-lose the weight I lost before they took out my gallbladder.

    I am sorry to hear about your dad. My dad was also an alcoholic. Because my parents were both alcoholics is one reason why I do not and never have been a drinker. Kind of ironic that I got this illness that is mostly considered to be a drinker's disease.


  11. klutzo

    klutzo New Member

    Hi Spacee,
    I take 2,000 units of vitamin D daily and a am a big believer in taking it, and not just for cancer protection. I used to get plenty of sun and did not need supps., but I've become so allergic to stinging insects that being outside is risking my life (8 stings in 3 years, and 3 of them life-threatening....Florida is full of bugs!).

    Also, I've read a lot to suggest that the so-called normal ranges for vitamin D were decided using already deficient populations, so some docs believe they should be higher. See for more info on this. The indigenous populations of the world, like aborigines for example, have double the amt. of vitamin D we have, and usually live very healhty lives until they get whatever it is that kills them off, very much like animals. I think we are meant to live this way too, and maybe more vit. D can help us do that.

    My last 25D test was 41, at the bottom of the
    "good" range, but optimal may be 50-60, and some say 80 or higher! I get my 125D tested also, to make sure I'm not making too much inflammation. The ratio of one to the other should be between 1.0 and 1.25. For example, my 125D is 47, which is a ratio of 1.1.

    It sounds like you've read up on it, so you already know it takes a HUGE amt. of vit. D over a very long period to get toxicity, and vit. D is dirt cheap, so I think it's a great supplement for most of us. Anyone who lives up north, and/or has dark skin, of slathers sunscreen on themselves is probably deficient.

  12. klutzo

    klutzo New Member

    Pancreatic insufficiency can cause some awful gas, so I never guessed creatine might do the same, until a friend told me today that her daughter had been a competitive athlete and had complained that some others were using creatine to build muscle, which caused smelly gas. Just thought I'd warn you, if anyone decides to try it. It is worth it to me, since it's increased my stamina so much.

    Since I am tapering off it now, trying to get to where I take it on exercise days only, which is 3 X weekly, I will report back if I can determine there is a difference. Meanwhile, I continue to contribute more than my share to global warming!

  13. spacee

    spacee Member

  14. serg1942

    serg1942 New Member

    Dear Rich,

    I am very interested in knowing your view about supplementing creatine in CFS (in general terms). I have lost a lot of weight while on the methylation treatment, think due to excessive detox causing excessive ATP demand, and producing high muscle catabolism (seen by very high 3-methylhistidine). Well, of course I have cut down the B12 dose and hope not to lose more weight, but I wonder how creatine could fit with the typical mitochondrial failure seen in CFS. My main doubt is why is not a typical supplement recommended for CFS…I know it supplies ATP while exercising anaerobically, but not sure if this is a good option for people with CFS who do not exercise anything….What do you think?

    Regards,and thanks
  15. klutzo

    klutzo New Member

    Hi Sergio,
    While I have none of Rich's research expertise, and I will be very interested to see his reply to you, it seems obvious to me that you could get some idea if creatine would help you just by looking at a copy of your last lab tests.

    Creatine is part of most "annual physical" labs, in the "chemistry" section of the report, right after "BUN", and you can see if yours was out of range like mine is. I always make sure I get a copy, since doctors often say labs are "normal" when they are really not.

    I do exercise, and always have, no matter how much it hurt, and I can tell you that in less than one month on creatine my deltoid muscles, for example, were back to where they should be after years of working out for so long.

    My deltoids had completely disappeared prior to that, despite exercising them 3 X week. I still have some muscle wasting in my right thigh, but the leg is much stronger now. I have also gained about 9 lbs., in my case unwanted, but it might be just what you need.

    Good luck to you,
  16. richvank

    richvank New Member

    Hi, Sergio.

    Even though Klutzo experienced great benefit from supplementing creatine, I don't think that supplementing creatine will help most PWCs in a fundamental way in terms of long-term energy availability, because in most cases the limited rate of mitochondrial production of ATP seems to be the primary problem in ATP availability, rather than a lack of ability to store phosphate groups to regenerate ADP to ATP using creatine. Supplementing creatine might produce benefit in supplying energy for short-term muscle use, though. It might also give more bulk to the skeletal muscles, as is observed by bodybuilders.

    Here's some background:

    Some creatine comes in from the diet, and some is also produced in the kidneys, liver, and pancreas. It is synthesized from glycine and arginine, which form guanidinoacetate, followed by methylation by SAMe. The synthesis of creatine is one of the two main demands for methylation in the body, the other being the conversion of ethanolamine to choline. If there is a partial methylation cycle block, one would expect that the synthesis of creatine would be below normal.

    Creatine is carried via the blood to the organs where it is needed, primarily the skeletal muscles, the heart muscle, and the brain. In these organs, it serves as a storage molecule for high energy phosphate groups, forming creatine phosphate. When there is a big, sudden demand for ATP, to operate the muscles in vigorous exercise, for example, the rate of production of ATP by the mitochondria is not high enough to meet the demand. In that case, the creatine phosphate supplies phosphate groups to ADP to regenerate ATP, forming creatine again. ATP produced by the mitochondria eventually recharges the creatine to creatine phosphate, forming ADP. So the creatine acts as an energy buffer for the organs in which it is abundant.

    Creatine phosphate spontaneously (without the help of an enzyme) degrades to form creatinine and a phosphate group. This occurs at the rate of about 1 to 2% of the total creatine phosphate per day. The creatinine is carried by the blood to the kidneys and is excreted into the urine. The ratio of creatinine in the blood to that in the urine is used as a measure of kidney function. The amount of creatinine produced per unit time is approximately proportional to the amount of skeletal muscle in the body, i.e. the lean body mass. In urine analysis, it is common to divide the concentrations of various species by the concentration of creatinine in order to normalize them and correct for varying amounts of dilution by water in the urine. The assumption behind this practice is that the rate of production of creatinine is not affected by health problems. This does not appear to be true in CFS and autism, because of the partial methylation cycle block.

    It is also common practice when doing magnetic resonance spectroscopy studies on the brain to take ratios of the peak heights for the other substances observed to the peak height for creatine, again based on the assumption that the creatine level should be more or less constant. This is done because it is much easier to take ratios than to measure accurate values for absolute amounts of these substances using MRS. Again, this constancy is probably not true in CFS, because of the partial methylation cycle block. We do not have absolute measurements of brain creatine in CFS, but MRS studies in CFS have found abnormal values of the ratio of choline to creatine. Since the syntheses of both choline and creatine require methylation, I think a partial methylation cycle block is the explanation for these observations.

    I suspect that supplementing creatine would give some benefit in many people with CFS in terms of storing energy for relatively short-term high demands. However, I think that in a short time, the creatine phosphate will be converted to creatine, and then the problem will be that the mitochondria are not able to regenerate ADP to ATP fast enough, and the person will "run out of energy" to operate their muscles.

    As you know, there are many things that block the proper operation of the mitochondria in CFS, including depleted magnesium, toxins, and infections. In my view, these problems begin with glutathione depletion. Glutathione depletion also allows the rise of oxidizing free radicals in the mitochondria, and these block the Krebs cycle and probably also the respiratory chain. In addition, in CFS there are shortages of Coenzyme Q-10, carnitine, and creatine (the latter is not actually in the mitochondria). These require methylation for their synthesis, so I think their shortages can be traced back to the partial methylation cycle block. So, ultimately, the partial methylation cycle block and glutathione depletion can be shown to be responsible for the mitochondrial dysfunction and the shortage of ATP in CFS.

    One more thing, just for completeness, though it isn't directly related to the issue we are discussing: The enzyme that catalyzes the reaction between creatine and phosphate is called creatine phosphokinase or just creatine kinase. This enzyme is normally found inside the types of cells where creatine is abundant. As these cells break down, this enzyme is released to the blood stream. There are different types of creatine kinase found in the skeletal muscles, the heart muscle and the brain. These types of creatine kinase are used as a diagnostic to determine whether these various types of cells are dying at a higher than normal rate in these different organs.


    [This Message was Edited on 06/21/2008]
  17. chubby

    chubby New Member

    I just wanted to tell you that you can cure Lyme disease without antibiotics. I can't tolerate antibiotics either.

    I'm in much the same situation as you. I've had Lyme for 18 years. I knew what it was when I got it, because I had the bullseye rash and felt terrible. Unfortunately I let the stupid doctors I went to talk me out of it.

    The worst complication I've had from it is Ulcerative Colitis, a whole world of torture by itself, even without the other Lyme symptoms.

    For the last 14 months I've been using a device called a Doug coil machine, named after the fellow who invented it to cure himself and his wife of Lyme in the late '80s. I'm not completely well yet, but the UC is gone, so I know it's working. I happened to meet Doug, or I'd still be going downhill. It gives me a big herx reaction every time I use it, so I still have some Lyme bacteria in there. It's supposed to take about 2 years for a complete cure.

    It generates a powerful alternating magnetic field which easily penetrates every part of the body, including the brain. The "Lyme and Rife" board on Yahoo has a lot of posts about it.

    I think I may have a food allergy problem which is causing some of my symptoms. I have MCS really bad too, so I'm very limited in what I can eat or medications I can take.

    Look into the Doug coil machine, I'm pretty sure it will help you a lot.

    I'm going to try a little Creatine and see if it helps me.

    Good Luck

  18. klutzo

    klutzo New Member

    Hi Chubby,
    Thanks for the advice, and I am very glad the Doug Coil machine is helping you so much. I have an aquaintence who is using a RIFE machine now, and am waiting to see how she does, since funds are very limited here.

    Meanwhile, I am getting some good results from Atlas Orthospinology, probably because I had a severe head/neck injury prior to my diagnosis with fibromyalgia. The typical Atlas bone misalignment is 1-3 degrees, but mine is 17 degrees out of whack, almost unheard of. I get some TCM treatments free because my husband, who is a contractor, barters work with the practitioners. That is the only way I can afford it. If I could find someone with a Rife machine who would barter the price, that would help a lot.

    I also got plenty of results from the Cowden Protocol, esp. Samento. The herxing was unbearable, but I put up with it for three years. Unfortunately, I have a lot of Lyme in my brain, and my husband could not tolerate the Lyme rages, so I had to drop down to maintenance dosage to save my marriage.

    I empathize with your MCS and I have the worst case of anyone I know. From my understanding, it is due to dysregulation of immunity from Lyme, with the TH2 or acquired immunity, being upregulated so it behaves like an autoimmune disease and over reacts to everything.

    I had to sleep on the porch for 77 days when we bought a new mattress! We have ruined floors in our house because I can't find any flooring materials, even so-called green ones, that I can tolerate. I hope this resolves for you. Even a new shower curtain has to be hung outside for 3 days before I can stand having it in the house.

    BTW, I was finally able to sleep in the new bed by having an NAET treatment,something I had considered to be quackery until I got so desperate that I tried it. It worked in only one treatment, so you might want to try it.

  19. serg1942

    serg1942 New Member

    Dear Rich,

    Thank you so much for your detailed explanation and background regarding the creatine kninase patwhay and its function on energy storing. I remember that you explained this alteration in the ratios between choline and creatine on CFS at the past IACFS 2007, like an evidence of the methylation cycle block. ¿Can I post this message on the Yasko-CFS group?

    Rich, I don’t know if you read a message I posted on the Yasko_CFS group. Just in case you didn’t, let me paste it again following. They are only a few observations I have made on methylation panels from a few persons, that I though could be interesting to you (I do not want a response, only let you know a few observations that seem to me very intesresting!):

    - First tell you that, after 8 months on the semi-complete methylation treatment, my methylmalonic acid improved greatly, but FIGLU got much worse, while pyroglutamic dropped a lot from the normal range to the low one. I guess that the need for glutathione on the kidneys rises
    because of detox, and that the need of THF is masked until you have the enough B12 in place.

    - Also want to tell you that at ELN laboratory in Europe, they measure the SAMe levels, both in RBC and in WBC (not WC that know it is on whole blood), that think is on white blood cells. I tell you that because I have seen a man with CFS whom methylation panel showed normal RBC and plasma SAMe, but low WBC SAMe, being RBC and plasma SAH and adenosine all high. So think the same issues for determining the glutathione levels on different organs may also be extrapolable to SAMe in some exent...

    - Finally I want to share with you the case of a woman who have not CFS, but rather has high mercury levels on blood without having amalgams, dysbiosis and hyperadrenalism, among other initial problems that many of us had before falling with disabling fatigue. Her methylation panel is very interesting with high SAMe and SAH, but low
    5-methylTHF and THF and in the lower normal limit methylcobalamine (it seem that they also can measure this marker!). So I have thought that she may be in the previous process of oxidative stress that can be depleting glutathione, and the body is sacrificing the AND/ARN
    synthesis by the folate cycle to maintain the methylation reaction. I read this possibility in a study and have thought this may be the case with this girl, and that maybe this is the previous process that precedes to the final methylation block….

    Thanks a lot for your excellent work,

    Best wishes,
  20. klutzo

    klutzo New Member

    Sergio and Rich,
    I don't know how you can think so intricately with brains that have CFS. My IQ is 140, but my Lyme brain will no longer compute all that you are talking about. I cannot do simple math without making mistakes now.

    So let me just ask you a couple of simple dumb questions, and please can you put the answers in plain English....

    1. How can I have a methylation block when my B12 is at the very upper end of normal, and both my folate and red cell Mg are way above the top of the normal range?

    2. How can I tell if I am over or under methylating?

    Thanks for humoring an idiot,


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