Methyl Block to Glutathione Usage (deliarose's progress)

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Mar 1, 2007.

  1. Slayadragon

    Slayadragon New Member

    Following is an article from the co-cure website. It is a protocol written by one of the presenters (a Ph.D. researcher) at the recent CFS conference in Florida.

    deliarose says that she has been using the simplified protocol for a couple of weeks and believes she is getting really significant improvements. I'd thus like to hear if anyone else has any thoughts.

    delia elaborates on her progress on a thread called something like "deliarose (questions on your recent progress)" started by me a day or two ago.

    She said a couple of days ago that she felt like "CFS was fading in a rearview mirror" and thinks this protocol may be at least partially responsible. I thus want to explore at least a little bit.

    Thanks for reading and giving thoughts if you have time.

    Best, Lisa

    **

    Posted by Rich (67.169.7.147) on January 25, 2007 at 19:55:14:

    January 25, 2007

    Suggestions for Treatment of Chronic Fatigue Syndrome (CFS) based on the Glutathione Depletion—Methylation Cycle Block Hypothesis for the Pathogenesis of CFS

    Richard A. Van Konynenburg, Ph.D.


    I presented the Glutathione Depletion—Methylation Cycle Block Hypothesis for the pathogenesis of CFS in a poster paper at the 8th international conference of the International Association for Chronic Fatigue Syndrome in Ft. Lauderdale, Florida, on January 10-14, 2007. This poster paper is available on the internet at the following url:

    http://phoenix-cfs.org/GSH%20Methylation%20Van%20Konynenburg.htm

    Since then I have received requests from some clinicians for a description of a treatment approach based on this hypothesis.

    I am a researcher, not a clinician, and I am well aware that it is one thing to believe that one understands the pathogenesis of a disorder, but quite another to know how to treat patients who suffer from this disorder. Nevertheless, I will respond to these requests to the degree I am able. What I can say in this regard will be based on what I perceive are the most successful treatment approaches currently used in autism, which I believe shares the same basic pathogenetic mechanism with CFS, and also on limited experience in communicating by internet with the small number of CFS patients so far who have elected to try these approaches. Of course, I am counting on clinicians to apply their judgment to what I write here, based on their expertise and clinical experience, since responsibility for treatment falls to them.

    I suspect that clinicians would like for me to supply a simple, straightforward approach that would be uniformly applicable to all CFS patients and thus readily useable in a typical busy practice in today’s medical climate, in which it is practicable to devote only a relatively short time to each individual patient. Believe me, I understand this, and I would very much like to be able to give such a response.

    Now comes the “however.” At this point it appears that it will actually be necessary in most cases to devote considerable time to each patient, and to tailor the treatment program to the individual patient. In my opinion, the reasons for this do not appear now to be lack of understanding of the pathogenesis, but to be inherent in the genetic individuality of the patients as well as in the variety of their concomitant medical issues and, for many, in their general state of debility. I now see this need for individual treatment and significant time investment in each patient as the most significant problem in the practicable delivery of treatment to these patients. Hopefully this will become clearer as I explain further, and hopefully also, this problem can be ameliorated to some degree in the future as more experience is gained.

    If you have read my pathogenesis paper, you know that I now believe that the fundamental biochemical issue in at least a large subset of the CFS patients is that the methylation cycle is blocked. Therefore, I think that the main goal of treatment must be to remove this block and to get the methylation cycle back into normal operation. I believe that it is also true that glutathione depletion is present in these patients and is directly responsible for many of the features of CFS, as I described in my recent poster paper, but I have found in interacting with clinicians as well as with many patients on the CFS internet lists, that it is usually not possible to normalize the glutathione levels on a permanent basis by direct approaches of glutathione augmentation. Instead, it appears that the methylation cycle block must be corrected first, to break the vicious circle that is holding down the glutathione levels. In addition to this, some patients, because of particular genetic polymorphisms, cannot tolerate supplementation with glutathione or other substances intended to help them directly to build glutathione. One clinician estimated to me that this group amounts to about one-third of the patients.

    Based on what is being done in autism by the Defeat Autism Now! (DAN!) researchers and clinicians and independently by Dr. Amy Yasko, N.D., Ph.D., I am going to suggest two treatment approaches for CFS. The first is a simplified approach which may be applicable to patients who have not been ill for an extended period, and who are not very debilitated. Use of this simplified approach would be based on the hope that the patient does not have certain genetic polymorphisms, which would not be known in this simplified approach. If the patient does in fact have these polymorphisms, the simplified approach will not be successful, and then you will have to move on to the more complex treatment. This simpler treatment approach is based partly on the treatment that was used by Dr. S. Jill James, Ph.D., et al. in the study that found the connection between the methylation cycle block and glutathione depletion in autism (This was Ref. 2 in my pathogenesis paper), but it makes use of supplements that are part of Dr. Amy Yasko’s treatment program. The second treatment approach is much more involved and is based on Dr. Yasko’s complete autism treatment. I currently believe that the second approach is the type of treatment that will be necessary also for most CFS patients, and certainly those of longer standing or greater debility, as well as those having certain genetic polymorphisms. However, I am including the simpler approach in an effort to match the practical demands of current medical practice, to the degree I understand them.

    In the simplified treatment approach, potentially applicable to patients who have not been ill for an extended period, who are not very debilitated, and who will initially be assumed not to have certain genetic polymorphisms, one would proceed directly toward the goal of restarting the methylation cycle, together with some general nutritional support. If this treatment is tolerated and is efficacious in a particular case, I think it could actually be relatively straightforward. I think it should be borne in mind, though, that if the simplified approach is not effective for a particular patient, there is the risk that trying it could discourage the patient before she or he reaches the second option. So I think it would be proper and wise to discuss this issue with the patient up front, and to apply considerable clinical judgment as to whether the simplified approach should be tried on a particular patient.

    The simplified approach would involve giving the following oral supplements daily, all of which are available from Dr. Yasko’s supplement website at holisticheal:

    ¼ 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).

    ¼ tablet Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, aka 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)

    (up to) 2 tablets (It’s best to start with ¼ tablet and work up as tolerated) Complete vitamin and ultra-antioxidant 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.)

    1 softgel capsule Phosphatidyl Serine Complex (This includes the phospholipids and some fatty acids)

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

    1 capsule SAMe (200 mg S-adenosylmethionine)

    1/3 dropper, 2X/day Methylation Support Nutriswitch Formula (This is an RNA mixture designed to help the methylation cycle. It is not essential, but is reported to be helpful.)

    Note that I have specified hydroxocobalamin rather than methylcobalamin as the main supplemental form of vitamin B12. I’ve done this to accommodate patients who may have downregulating polymorphisms in their COMT (catechol-O-methyltransferase) enzyme, which many CFS patients seem to have. If they do not have these polymorphisms, methylcobalamin would be more effective, but in this simplified treatment, the patient’s polymorphisms will not be known. I am also including a small amount of SAMe, which is also a compromise, since the amount needed will again depend on COMT polymorphisms, which will not be known for this simplified treatment. The amount of B12 specified is also a compromise, since those with certain polymorphisms will benefit from a higher dosage than will those without them.

    After this treatment is begun, you can expect the patient to feel worse initially, and I think it would be proper and wise to make the patient aware of this before the treatment is begun. It is necessary to determine whether this feeling is occurring because the treatment is working and the patient’s body is beginning to detox and kill viruses, or whether it is occurring because the patient does in fact have upregulation polymorphisms in their CBS (cystathionine beta synthase) enzyme, in which case you will have to move on to the more complicated complete treatment regimen. Which of these is the case can be determined by taking spot urine samples for a urine toxic metals test and a urine amino acids test from Doctor’s Data Laboratories. These can be ordered through Dr. Yasko (at testing4health) if you would like to receive her interpretation of the results, or they can be ordered directly from Doctor’s Data Laboratories (doctorsdata). If the toxic metals are elevated on the urine toxic metals test, this will indicate that the patient has begun to detox, which is desirable. If taurine and ammonia are elevated on the urine amino acids test, this will suggest that the patient does have CBS upregulation polymorphisms, in which case you will have to stop this treatment and move to the more complicated approach described below. It would be best to do this treatment for a week or two before doing the urine tests, so that meaningful results can be obtained on these tests, unless the patient cannot tolerate it. If the latter is the case, then you will have to go on to the more complicated treatment approach described below.

    As I have emphasized, the simplified treatment approach may or may not be tolerated by a particular patient, and I will explain why it might not be tolerated later in this discussion.

    Now I will move on to the more complicated treatment approach that I currently believe will be necessary for most of the patients. I will not supply all the details of this treatment approach in this letter, but will try to give you an overall picture of the sequence of steps involved. I recommend reading Dr. Yasko’s book “The Puzzle of Autism,” and consulting her other materials as well. These are available from amazon by searching on “Amy Yasko.”

    Before getting into this treatment approach, I first want to discuss some important issues, and then I will discuss the treatment, step by step:

    1. It is necessary to minimize the use of pharmaceuticals in treating CFS patients. There are at least two reasons for this. As you know, the use of pharmaceuticals is based on their being eliminated at certain rates by the body’s detox system, found primarily in the liver, kidneys and intestines. However, many CFS patients have polymorphisms in their detox enzymes, including CYP450 enzymes and Phase II detox enzymes. (If desired, these can be characterized by the Detoxigenomic panel offered by genovations). Because of these polymorphisms, many patients are genetically unable to detox pharmaceuticals at normal rates, and cannot tolerate them. In addition to this, all patients who have the glutathione depletion and methylation cycle block suffer from biochemical inhibition of their detox systems, whether they have these polymorphisms or not. Because of these two factors, CFS patients suffer from the toxic effects of pharmaceuticals. Treatment using nutritional supplements is necessary, and some herbals can be tolerated as well.

    2. Because of the broad nature of the current case definition for CFS, the population defined by it is very heterogeneous. It is likely that the pathogenesis model I have presented for CFS will not fit all patients. For this reason, I recommend a relatively inexpensive glutathione measurement initially, such as the red blood cell total glutathione test offered by immuno-sci-lab (phone them for details) or by Mayo Laboratories. Perhaps a better test is the serum reduced glutathione test offered as part of the Comprehensive Detox Panel at gdx. If a below-normal value is found in either of these tests, I think that there is a good chance that this pathogenesis model fits the patient.

    3. Different patients have different genetic polymorphisms in the enzymes and other proteins that impact the methylation cycle and the associated biochemical cycles and pathways. Some of these polymorphisms will have important impacts on the choice of specific parts of the treatment program. In using the more complicated treatment approach, it will be necessary to characterize the polymorphisms before it will be possible to make some of the decisions about selection of particular treatment aspects. The most comprehensive panel for this is Dr. Yasko’s Comprehensive Basic SNP (single nucleotide polymorphism) Panel I, available from testing4health. Dr. Yasko has selected the polymorphisms on this panel by correlating their presence with severity of autism symptoms and with the results of biochemical testing (mainly spot urine tests for organic acids, amino acids, and essential and toxic metals). This is a somewhat unorthodox method that jumps over the usual intermediate steps involved in studying polymorphisms, and there is not universal agreement about her results in the research community, but I think Dr. Yasko’s treatment outcomes are speaking for themselves, as can be seen from the voluntary testimonials of parents of autistic children on the parents discussion group at autismanswer. As a researcher, of course, I look forward to the day when these polymorphisms will be thoroughly researched and characterized, and have encouraged those involved in such work to forge ahead. The results from this genetic panel require interpretation. One can either study Dr. Yasko’s materials to gain her insights on interpreting the results in general, or order her interpretation of the particular results, which is called a Genetic Analysis Report or GAR. The GAR is a computer-generated report with some general material that applies to all the cases, and specific sections that are chosen in response to the particular genetic polymorphisms found in the individual patient. As such, the continuity of the discussion in the GAR is not what would be found in a report written from scratch for each particular patient, and it may have to be read more than once to make all the connections in one’s mind, but the material contained is specific to the particular genetic panel results, and Dr. Yasko updates the material used in generating the GARs as more is learned.

    4. As I have discussed in my paper, people who have been ill for an extended period of time (many months to many years) will have accumulated significant infections and significant body burdens of toxins, because both their cell-mediated immune response and their detox system will have been dysfunctional during this time. When the methylation cycle is then restarted, both the immune system and the detox system will begin to function better. When they do, pathogens and infected cells will begin to die off at higher rates, and toxins will be mobilized. The resulting detoxification will be unpleasant, and may even be intolerable. If the patient has not been prepared in certain ways, discussed below, she or he may not be willing to continue this and may drop out of the treatment program.

    5. One of the most important preparatory activities is to make sure the gastrointestinal system is operating well enough to be able to absorb nutrients, including both food and the oral supplements used in the treatment, and also well enough to be able to dispose of toxins into the stools on a regular basis. If this is not done, it is likely that the treatment will not be successful. Treatments for the G.I. system, as well as for other aspects described below, are discussed in Dr. Amy Yasko’s book. Some CFS patients have reported benefit from Xifaxan to treat deleterious bacteria in the gut. This antibiotic is not absorbed from the G.I. tract, so it does not present problems for the detox system.

    6. Another very important aspect of the preparation is to deal with the overstimulation or overexcitation of the nervous system that is present in CFS. This probably results from several causes, including depletion of magnesium and in some cases depletion of taurine, low blood flow to the brain because of low cardiac output, glutathione depletion in the brain producing mitochondrial dysfunction, and dietary and other factors causing elevation of excitatory neurotransmitters and depletion of inhibitory neurotransmitters. It is important that this be dealt with because if it is not, the patient will be less able to tolerate the detox inherent in the treatment.

    7. Another important step is to ensure that the patient’s nutritional status is supported. Many CFS patients are in a rather debilitated state, partly because of deficiencies of essential nutrients. They are also in a state of oxidative stress. Appropriate nutritional supplements can correct these problems at least to some degree and get the overall metabolism of the patient into a better state, so that they can better tolerate the detox part of the treatment.

    8. Particular organs or systems may not be functioning well and may need extra nutritional or herbal support. Which ones will vary from one patient to another, so this part of the treatment must be tailored to the individual patient.

    9. Chronic bacterial infections should be addressed. According to Dr. Yasko, females in particular appear to be prone to streptococcal infections. She also finds that aluminum appears to be associated with the bacteria, so that when the bacteria die off, aluminum is excreted. While antibiotics can be used, there are downsides to this, both in terms of difficulty in detoxing some of the antibiotics and in terms of killing beneficial intestinal flora and encouraging deleterious ones, such as Clostridia dificile. In addition, some CFS patients have experienced tendon problems from the fluoroquinolone antibiotics. Dr. Yasko prefers natural antimicrobial treatments.

    10. When the methylation cycle is restored, the normal detox system is able to deal with more of the toxins. Dr. Yasko also uses low doses of oral EDTA, but not the sulfur-containing chelators (DMSA and DMPS), to help remove aluminum as well as other metals, including mercury. DMSA and DMPS are not used because they can also bind glutathione, so that if a patient who is low in glutathione receives these chelators, their glutathione status can be worsened. Also, DMSA and DMPS are rich in sulfur, and CFS patients with certain polymorphisms cannot tolerate them. She also uses some natural RNA formulas for detoxing, as well as for a number of other purposes during the treatment. These are somewhat costly, and are not required as part of the treatment, but are reported to be helpful.

    11. As mentioned in item 3 above, it is important to characterize relevant polymorphisms prior to bringing up the methylation cycle operation. One of the most important aspects of this is to evaluate polymorphisms in the CBS (cystathionine beta synthase) enzyme, which is located at the entrance to the transsulfuration pathway and converts homocysteine to cystathionine. Although this is somewhat controversial within the research community, Dr. Yasko finds that certain polymorphisms cause an increase in the activity of this enzyme. The result is that there is too large a flow down the transsulfuration pathway, and somewhat counterintuitively this results in lowered production of glutathione, as well as elevated production of taurine, ammonia, sulfite and hydrogen sulfide. The last three of these substances are toxins. If a patient has CBS polymorphisms, it is necessary to deal with this aspect before restarting the methylation cycle. If this is not done, efforts to start this cycle will result in increased production of these toxins. This may explain why some patients cannot tolerate direct efforts to build glutathione using sulfur-containing substances, while others derive some benefit from this. Dealing with this CBS upregulation situation can take a month or longer.

    12. Only after all these issues have been addressed is the patient ready to start supplementing with larger amounts of the folates and cobalamins to begin major restoration of operation of the methylation cycle.

    13. As you can see from the diagram in my pathogenesis paper, there are two possible pathways from homocysteine to methionine. One involves the enzyme methionine synthase, which requires methylcobalamin and is linked to the folate cycle as well, and the other involves the enzyme betaine homocysteine methionine transferase (BHMT), and requires trimethylglycine or one of the phospholipids (phosphatidyl-serine, -choline, or -ethanolamine). Ultimately, it is important to get the methionine synthase pathway back into operation, but in Dr. Yasko’s practice it has been found that it is easier to start up the BHMT pathway first. I think the reason is that S-adenosylmethionine (SAMe) interacts with methionine synthase, and by first starting up the BHMT pathway, one ensures that there is enough SAMe to start up the methionine synthase pathway.

    14. As these steps are taken, the immune system and the detox system will start to function at higher levels, and die-off and detox will begin. These processes are monitored using periodic spot urine testing, and decisions about when to proceed to the next step in the treatment program are based on this urine testing.

    15. Viral infections are dealt with naturally as the immune system recovers, though Valtrex is used in some cases. As the viruses die off, it is observed that heavy metal excretion increases. Heavy metal excretion is tracked using periodic spot urine tests and is plotted as a function of time to determine the progress.

    16. When appropriate indications are seen in the urine testing, the BHMT pathway is slowed using dimethylglycine, which is a product of the BHMT reaction, and thus exerts product inhibition on it. This shunts the flow through the parallel methionine synthase pathway. This has the effect of bringing up the folate cycle, which is linked to it, and also bringing up the biopterin cycle, which is linked to the folate cycle. The folate cycle is needed to make new RNA and DNA to proliferate new cells, such as T cells in cell-mediated immunity. The biopterin cycle is necessary for the synthesis of serotonin and dopamine as well as for the operation of the nitric oxide synthases. Some patients benefit from direct supplementation of tetrahydrobiopterin, often in very small amounts.

    17. The treatments up to this point should resolve most of the symptoms of CFS. The last step is to support remyelination, which has been dysfunctional during the time when the methylation cycle was blocked, because methylation is necessary to synthesize myelin basic protein. This should improve the operation of the nervous system.

    That is a rough outline of the treatment process, and again, I refer you to Dr. Yasko’s materials for the details.

    I’m sorry that this treatment approach is not simple, quick, easy and inexpensive, but unfortunately, I think this rather complex process is what is required, for the reasons I’ve given. I hope this is helpful, and I would very much appreciate it if you decide to try this treatment approach, that you will keep me informed of how it works out for your patients. If I can answer questions that come up, please let me know.

    Rich Van Konynenburg

    [This Message was Edited on 03/10/2007]
  2. Gosia

    Gosia New Member

    Lisa

    I read the whole thing. Very interesting. I'm taking supplements of gluthatione, but I didn't have a clue how impotrant was to my body. Great atricule. Thank you for sharing.

    Gosia
  3. Elisa

    Elisa Member

    This is great...I just e-mailed Rich a few days ago to ask him questions about this very subject.

    I think you're on to something Lisa!

    Elisabeth
  4. Forebearance

    Forebearance Member

    Yikes, this is hard to understand. I don't even know what the methylation cycle is.

    But it does sound vaguely like what Dr. Cheney was talking about. Hmmm. I should go watch his DVD again.

    Listening to CFS researchers is like listening to blind men describing an elephant by touching it. (that old joke)

    Each one describes something that is happening in the body of a person with CFS, but no one is putting the whole picture together. Or at least, not too many people are.

    I'm excited for deliarose, to hear that she is feeling better! I hope I can get a grasp of this treatment approach.

    Thanks for posting this, Lisa.
    Forebearance
  5. Slayadragon

    Slayadragon New Member

    Thanks to all for comments thus far.

    I don't understand this new approach very well at all, and so I think the more input we can get, the better.

    Best, Lisa
  6. Slayadragon

    Slayadragon New Member

    If there's one thing I've learned from reading this board, it's that there is _nothing_ that helps everybody with CFS, and that most treatments that help some people have deleterious effects on others.

    I think that's one reason that this board is so useful: to share as many ideas (including ones that haven't been scientifically proven) as possible, since each of us may then manage to find at least a few that help them individually.

    If there's ever one cure that helps everyone on this board (or even those who seem to have CFS), I'll be really amazed.

    Best, Lisa


  7. Slayadragon

    Slayadragon New Member

    If you get comments back from Rich, would you please share them with us?

    Thanks!

    Best, Lisa

  8. maxwedge

    maxwedge New Member

    You said, "I just remember that the doctor from Belgium said that if there were a cure for CFS it would be published everywhere." That statement could not be more wrong.

    Best wishes,
    Max
  9. Slayadragon

    Slayadragon New Member

    These supplements are all quite inexpensive, except for the Methylation Support (cited as optional).

    The first two on the list would be about $10 a month total.

    SAM-e and phosphadityl serine complex are not cheap, but only small amounts are being used.

    Any brand of B12 is fine.

    The multivitamins are reasonably priced from that site. I don't know if regular multivitamins might work just as well.

    The Methylation Support is kind of expensive (something like $150 per bottle), but that's cited as optional.

    Unless you're referring to the tests?

    Best, Lisa

  10. maxwedge

    maxwedge New Member

    Sorry for attributing the quote to you when it was the doctor's. The reason I have a problem with the doctor's quote is that cures can lanquish for a decade or more before your run of the mill doctor even hears about it. Look to research for answers, not doctors.

    Best wishes,
    Max
  11. cct

    cct Member

    If this DD is nothing else, at least it is always interesting!

    Thanks for sharing the information, Lisa.

  12. Slayadragon

    Slayadragon New Member

    Oh, I don't understand that article either! I just copied it from another place and was hoping that other people could give suggestions.

    I think there are people on the board who understand this particular topic far better than I do.

    Best, Lisa

  13. munch1958

    munch1958 Member

    I've been nebulizing compounded glutathione since Halloween 2006 for MCS. It's a protocol from the Detroit FFC. I use 1 ml. of Bronco Saline and 2.5 ml of 100 ml. glutiathione 2X per week so I'm getting 500 ml.

    There's no barnyard smell here....The solution smells and tastes a little bit like sulfur from a match. It takes about 15 minutes and the taste goes away. Other than the noise from the nebulizer compressor this is a painless way to get glut.

    My insurance covers glutatione (Express Scripts). I pay a $25 copay for a month's supply plus an overnite shipping charge because it needs to be kept cold. I already had the nebulizer but that costs about $80.

    All of my EBV titers have gone down and my MCS seems to be in remission! My overly acute sense of smell has completely changed and my vision is much sharper. I'm much more able to tolerate cigarette smoke, perfume, chlorine bleach and petrochemicals like kerosine and gasoline. On the days that I nebulize I sleep like I'm in a coma.

    I've been trying to understand the mechanics of glutathione. Here is a link to a webpage by Martin Pall, Professor of Biochemisty @ Washington State University, "A Novel Disease Paradigm Produces Explanations for a Whole Group of Illnesses." The illnesses are MCS, CFS, FM & PTSD.

    http://molecular.biosciences.wsu.edu/Faculty/pall/pall_main.htm

    The author compares Cheney & Teitelbam protocols and lists different agents and their effects on down regulating
    the NO/ONOO- cycle. Dr. Ziem's protocol looks interesting. I'd like to get the FFC to add hydroxocobalamin.
  14. Forebearance

    Forebearance Member

    Hi, Denise,

    My heart goes out to you. It's not easy to have this disease. I think that the stress of having CFS exposes whatever weaknesses or susceptibilites your body naturally has.

    So I think that's why different things work for different people. For someone like me, who has hypothyrodism in my family, having CFS brought it out earlier than I otherwise might have developed it. So Armour thyroid has helped me a lot. And tiny amounts of estrogen, progesterone, DHEA, and for a while, hydrocortisone, have helped me.

    Osteoporosis runs in my family, too. So I have found that calcium helps me a lot. And then I discovered that all minerals seem to help me a lot. I take every mineral I can find, in the most easily absorbable form. The most easily absorbable form seems to be chelated minerals.

    I also have been helped by milk thistle extract, essential fatty acids, kelp, L-glutamine, caprylic acid, Candidase and Virastop (anti-viral (protein-digesting) enzymes),.

    Then I've recently been doing elements of the heart supporting protocols suggested by Dr. Myhill and Dr. Cheney. The Corvalen is part of that. It's a nutritional sugar that helps muscles make energy. I'm also taking L-Carnitine, Co Q-10, and a few B-12s. I feel like B-12 doesn't do much for me or agree with me that well, so I'm thinking of trying the folate products suggested in the Methyl pathway thread.

    The Corvalen is expensive, but it seems to give me more energy if I take three scoops a day of it. It seems to help my muscles get stronger again, so I can exercise more. I can walk about 10 blocks now. It had a more noticeable effect at first. Now, I don't feel much from it, but I feel worse if I don't take it. That happens to me with a lot of supplements.

    And I'm about to try Nexavir, or/and increase my dose of Virastop. It's hard, because you can only try or add one new thing at a time. It takes a while to try all the things I want to try.

    I don't know if any of my experiments would be helpful to you, but hey, we're all guinea pigs here. All I can do is wish you the best in your healing journey. And please don't give up. It takes a ton of patience.

    Oh yeah. I don't work with a CFS specialist. There are none in my town. I work with a regular doctor who is open-minded and listens to me and believes me. She lets me try things if I give her some research that supports them. Or some articles by famous CFS doctors that are using them. She and I kind of work as a team. I do the research, and she tells me if something is going to kill me or not. lol

    Love,
    Forebearance

    (Sorry for getting off topic in this thread.)

    P.S. I forgot about hawthorn. It helps the heart. It is inexpensive, and powerful, so you get a lot of bang for the buck. There were some threads on it earlier.
    [This Message was Edited on 03/04/2007]
  15. pocahontas606

    pocahontas606 New Member

    The link between adrenal fatigue and DNA methylation
    Townsend Letter for Doctors and Patients, May, 2005 by Susan Solomon


    Editor:

    Adrenal function is vital to life: without cortisol we die. This fact has been known since the 1930s when it was described by Banting and Best. Glucocorticoids are essential for maintaining carbohydrate, protein and fat metabolism. They also have a permissive effect which allows for glucagon and catecholamines to work. Important glucocorticoid effects include the normal functioning of the nervous system, water metabolism, vascular reactivity, regulation of circulating lymphocytes and the immune system and "resistance to stress." Complete lack of adrenal function is a disease state known as Addison's Disease. Conventional medicine only recognizes two states: you either make cortisol or you don't. Allopathic physicians are unaware of the decline in adrenal function as illness becomes chronic.

    The etiology of adrenal fatigue begins with a "stressor," or in functional medicine terms, a "trigger." Triggers fall into several categories: psychosocial stress, environmental toxins (radon, mercury, mold), infectious organisms (fungal, bacterial, parasitic), food allergies (wheat, corn, sugar, milk), and other toxins (alcohol, drugs, prescription medications) to name a few. In addition, stressful events such as surgery or car accidents place a huge (usually unrecognized) load on the adrenal glands. The initial response to each of the above events is to elevate cortisol levels to help cope with the stress. However, over time, the adrenals become weakened and lose their circadian rhythm. This is due in large part to poor nutrition. All stressful events require increased amounts of several nutrients: vitamin C, pantothenic acid, B6 (pyridoxine), B12 (methylcobalamin), and folate. Interestingly, if the adrenal glands are catheterized and a "stressor" is introduced, the first chemical to leave the adrenals is not cortisol as one would suspect, but large amounts of vitamin C. These nutrients are severely lacking in the typical American diet or are not found in high enough amounts. More often than not "orthomolecular" dosing is necessary to correct the deficits.

    The initial response to any stress is the hypersecretion of cortisol, but over time (approximately one year) there develops a negative feedback and a genuine "fatigue" causing reduced levels of DHEA-S and cortisol. The end result is an organism with reduced immunity, increased likelihood of autoimmune disease, heart attacks, elevated cholesterol and triglycerides, skin disorders, carbohydrate cravings, protein wasting, fatigue and depression (to name but a few). Physicians normally view these as separate events in a given organ and do not see that the symptoms represent a disease process (inflammation) that may occur in one or more organs simultaneously. Therefore everyone with any chronic disease, not just cardiovascular disease, should be screened using DHEA-S and a homocysteine level. As DHEA-S decreases, the level of homocysteine rises, with a concomitant decrease in most B-vitamins, but especially folate and B12. The currently accepted norms for these parameters are too permissive, reminiscent of glucose control in years past. All of our organs are linked and nothing that happens is random. We are all the result of our genetic interaction with our environment.

    With the establishment of "disease" another pivotal biochemical event happens: abnormal methyl metabolism. Multiple reports in the recent literature link abnormal DNA methylation with the onset of cancer in laboratory animals. Undoubtedly this occurs in humans as well.

    It is my clinical experience that as soon as a patient's DHEA-S falls to below 160 the ability to make methyl groups nosedives as well. These patients may then present with symptoms of depression (inability to synthesize S-adenosylmethionine), joint pain (inability to make methylsulfonylmethionine), and gastric acid reflux disease (inability to make betaine or trimethylglycine), to name a few. Not only does the ability to make methyl groups decrease, but the ability to convert to a methylated product is also compromised. For example, in chronically ill individuals the use of B12--as either the cyanocobalamin or the hydroxocobalamin form seems to do little to improve fatigue or mental functioning. The ideal compound to replenish B12 is methylcobalamin--the only active form. In each case, oral supplementation with the missing methyl-containing substrate ameliorates the symptoms. In each of the scenarios listed, the severity of the illness correlates with the level of the reduced or deficient DHEA-S and the concomitant elevated homocysteine level. The elevated homocysteine level is not only a marker for inflammation, but it is a marker for deficient B vitamins as well. The stage is now set for abnormal DNA methylation and the induction of cancer.

    Efforts to repair adrenal fatigue include nutrients (in their most active form), glandular preparations, DHEA (and in severe cases cortisol itself), and lifestyle modifications with removal of triggers. Even with these measures, expect adrenal recovery to take 3 to 5 years.



  16. Forebearance

    Forebearance Member

    Hey, everyone,

    Have you read this article?

    It is also by Rich Van K. In it, he explains his theory about CFS. I found it to be easier to understand. I highly recommend it.
    http://phoenix-cfs.org/GSH%20Methylation%20Van%20Konynenburg.htm

    Love,
    Forebearance
    P.S. Yes, Denise, I am pretty weak, but I'm getting stronger.
  17. Slayadragon

    Slayadragon New Member

    Thanks for the link, Forebearance.

    I found a bunch of articles by Rich on the same site. I will read them soon.

    here is the link for his papers and other research:

    http://phoenix-cfs.org/The%20SITE/CFSResearchIntro.htm

    Best, Lisa

  18. roge

    roge Member

    Lisa,

    interesting theroy and I had heard of it before but not fully explored due to limited energy. sorry i cant really contribute much here. First step for me will be to try the undenatured whey first as a way to increase glutathione and see how I react. should be getting it anyday. hopefuly it and my other supplememts I recently ordered from Prohealth wont sit at customs for weeks....

    My new doctor in Ottawa is at least is aware of this theory and actually seems fairly up to speed and knowledage with respect to this and the whole metabolic theory that may cause or be a contributing factor in our illnesses.

    peace
  19. woofmom

    woofmom New Member

    In the last two months, I started drinking a lot more orange juice (NOT FROM CONCENTRATE-I don't need varnish remover or formaldehyde). The supplements I take helped. But, more Vitamin C seems to be a big help. And today I added selenium to my supplements. I read what other doctors have to say. But, Dr. Blaylock is the one whose advice I continue to follow. He has helped me a ton. When it comes to my health, he's a Saint.
  20. pw7575

    pw7575 New Member

    I couldn't read it all right now. I had blood taken today and am not up to par. I will read it later though.

    What I did read of it sounds very interesting. I really would like to see how people fare with this.

    Thanks again for posting this for us all! If it helps one person it is worth it.

    Take Care,
    Pam