Ammonia Program for CBS Upregulation

Discussion in 'Fibromyalgia Main Forum' started by Sceptical, Feb 5, 2010.

  1. Sceptical

    Sceptical New Member

    Does anyone know details (I mean protocol) of this Yasko type program for those who cannot tolerate sulphur containing stuffs? "CBS upregulation must be dealt with first" as Rich quotes Amy Yasko but no protocol is available anywhere. Without this "ammonia support" our body generates H2S and ammonia from sulphur containing substances. Whitout such an accurate protocol one cannot fill this theory with any meaningful contents. Taking randomly yucca, activated charcoal would obviously be not advisable.

    Any idea? Personal experience?

    Adam
  2. mrlondon

    mrlondon Member

    Feel free to read my web page on this topic:

    http://web.mit.edu/london/www/cbs.html

    - Mark
  3. Sceptical

    Sceptical New Member

    The web page you were referring to was interesting. It does not, however, resolve my (and many CFS patients`) problem which is that we do not tolerate sulphur containing substances anymore. For some reason sulphur containing nutrients do not increase our cystein or methionine reserves but cause excessive overstimulation instead. Sulphur containing substances must not cause overstimulation. In addition, we all test positive on heavy metal provocation tests and the fact that detox (which is heavily sulphur dependent) is severely compromised in CFS is well documented. Something must occur in metabolism (derailment) which accounts for this anomaly. Finally both ammonia and H2S levels (mostly the latter) correlate with cfs symptoms. Accordingly, Amy Yasko must have sensed something. I am a living exaple. What follows from that (if anything) I do not know. I would like to resolve.

    Adam
  4. simonedb

    simonedb Member

    I cant tolerate sulfur sufates sulfides
    why can't we take charcoal?
    sometimes i take pepto bismal but wish it didnt have dye
  5. richvank

    richvank New Member

    Hi, Adam.

    Amy Yasko bases her detailed protocol advice for her "Ammonia program," including dosages, on the results of her nutrigenomic panel, which characterizes a number of genetic polymorphisms, including two of them in the gene for the CBS enzyme. A person can have either one or two copies of each of these polymorphisms, or none at all. So there are four combinations of having one or two of each of these polymorphisms. Basically, she increases the number and dosages of the various supplements as the number of polymorphisms increases.

    But I must emphasize that she does not usually give exact protocols. She suggests things that she thinks would help for each issue, and then leaves it up to the person to try things and see what works for them. She acknowledges that each person is unique and that different people respond somewhat differently to the same treatment.

    If you want to find out the experiences of others who have done this, you could join her discussion forum at www.ch3nutrigenomics.com. This group has about 10,000 people on it now, mostly parents of autistic children. However, there is a section devoted to parents and other adults, and quite a few people with CFS participate there. There is also another group at http://health.groups.yahoo.com/group/CFS_Yasko/ that you could join. This group is devoted to people with CFS who are trying either the full Yasko treatment or the simplified treatment based on it that I have suggested. There are about 1,000 people in this group now. You could either search the archives of these groups, or you could ask questions there, and others will respond.

    I hope this helps. I'm sorry that I cannot give you a straightforward answer to your question.

    Best regards,

    Rich
    [This Message was Edited on 02/06/2010]
  6. Sceptical

    Sceptical New Member

    Thank you Rich for your answer. When it is about health and medicine as a science with applied principles it is just really weird to rely on hearsay. It is rather disappointing and honestly questions the weight of this theory. I thought you might have some knowledge bc some of these patients necessarily popp up in your "group" since you rely on Amy Yasko`s theory. You yourself said in one of your statements that such problems must be dealth with first. I have never suspected that this mean in science making surveys among patients. One supposes that there are at least some basic guidelines even if patients differ.

    In sum I think that in order to be considered a researcher in the scientific world, you must publicize your idea in scientific journals. It would subject your theory (say Amy Yasko) to peer review to screen out junk science. It is not fair to support a theory by referring to patients testimony on how they feel.

    adam
    [This Message was Edited on 02/06/2010]
  7. simonedb

    simonedb Member

    hey I am still curious what you meant in your reference to charcoal? why is that contraindicated?
  8. Sceptical

    Sceptical New Member

    Charcoal is not contraindictaed in general. That however binds minerlas, vitamins and other substances (like meds) of vital importance. Thus a routine administration of that would be undoubtedly insane. This is why it would be crutial to see a protocol. You would take that for a certain time for a certain purpose. Anecdotal evidence is not reliable avidence at all and not trustworthy.
    adam
  9. simonedb

    simonedb Member

    oh right, I agree, I try to take it awhile after supps when do.
    I take pepto sometimes after de merlier came out with his theory on hs2 or whatver the acronym is last summer
    but I dont know if thats wise but sometimes helps feel a little better

    do you think there is a way to deal with it that just hasnt been evidenced based yet?
  10. TigerLilea

    TigerLilea Active Member

    Hi Adam - Anyone doing a heavy metal provocation test would test "high". For most people, without the provocation, their test results would come back as "normal". When a person truly has a heavy metal problem, there is no need to do provocation testing.
  11. richvank

    richvank New Member

    Hi, Adam.

    Sorry about your disappointment. All of us, including me, wish that the research in this area were at a more mature stage of development. However, we are where we are, and that's where we have to start. I realize that as a person with one of these disorders, you are faced with the decision of going ahead and trying something that has not been through the whole research process, or waiting until this is done, without knowing how long that will take, and risking progression of your illness with time. Please understand that I did not engineer this situation, and that I am working to change it. But right now, this is the reality that we must face.

    Research costs money, and publication in journals does as well. We were able to get some funding from an anonymous donor that enabled us to do a small clinical study, but it was an open-label study without a placebo control group, blinding, randomization, etc. We all agree that those are good things to do, but they all cost money, and since the treatment we are working with does not include patentable drugs, the main sources of funding for clinical trials, i.e. the drug companies, are not interested. As a result of its limitations, our clinical study does not have all the characteristics that would make it readily publishable in a journal. We did present it at the most recent IACFS/ME conference, and we have gotten considerable peer review. Believe me, I would love to get something published in a journal about this, and I hope that someone who is better positioned to be able to obtain a grant and do human clinical studies will become interested and will pursue this further, so that more controlled studies can be done and papers about them published in peer-reviewed journals. I think that it's important to understand that these things do not just magically happen because we would like them to happen.

    In addition, please understand that I am a researcher, not a licensed physician, and I cannot legally give you individual treatment advice unless a physician is involved to review my suggestions. I have given you contact information for the forum that is conducted by Dr. Yasko, who is a naturopathic doctor as well as a research scientist, and as far as I know, she is the most knowledgeable about the problem you raised concerning sulfur sensitivity, and production of excess NH3 and H2S. There are a few other physicians in the U.S. as well as in the UK who treat methylation as part of their CFS protocols, but I don't know of any where you live. If I did, I would tell you about them.

    As I see it, the choice is yours. You can continue to be disappointed and decide to wait for an indeterminate time, hoping the studies and journal publications about this type of treatment will take place, or you can do what you can to evaluate the available evidence and experience of others, and if it seems promising enough considering its cost, as well as safe enough, you can make your own decision to try it. It's up to you.

    Best regards,

    Rich
    [This Message was Edited on 02/06/2010]
  12. Sceptical

    Sceptical New Member

    Not true. Detox is not working properly in us. This is well documented. I however never said that heavy metal accumlation was the core problem in cfs.

    adam
  13. Sceptical

    Sceptical New Member

    You got me wrong. You have a theory. I completely understand that your results are preliminary only and have lots of loopholes at this stage. What I have completely missed was your analysis or knowledge with respect to the subgroup to which I belong (this subgroup or problem is not unheard of). It is also kind of misleading in your statements and publications to interpret overstimulation only as detox bc as in my case it is not (pure, lasting side effect). It might well cover a genetic polymorphism which makes some patients not suitable for your proposed treatment. At least not as proposed. This was just a remark. Your suggestions might be perfect for others.

    From your response I know that there is a lack of knowledge in this field. Fine. Your theory (your ideas) is relatively well documented (not in scientific journals though) as specified to a subgroup of patients. However, Amy Yasko's Ammonia and H2S theory is not documented at all. This latter failure qualifies the researcher bc it does not make it possible to verify data and have a meaningful discussion about it (peer review). Discussion between patients as a way of confirming a theory is a joke. In this respect your reference to lack of money is also clearly not on point. I am not a researcher but if I claimed to have found something out I had numerous resources to publish it online. This is the 21st century. Moreover, it does not mean anything where I live, I can contact anyone and can read research papers published in any journals. Thus, if you know anyone, anywhere, etc, just let me know. I am also glad to hear about yucca, molybdenum, charcoal, etc. Do not take them of course but keep an eye on further research.

    Many physicians point out exactly to the same fact that Amy Yasko does not set forth anywhere a logical theory supported by tangible, scientific evidence which would be verifiable. Her book also uses general terms and references to charcoal and yucca (in addition to an analysis of various genetic profiles), etc and that every patients differ. Her web page contains no references to any studies done in this field, and there is no comment on the supplements she offers for sale. Advising patients to take yucca or activated charcoal without describing how to implement it (dosage, duration, ect) does not even resemble a science.

    Nothwithstanding the above, I wish you and Amy Yasko good luck bc patients would deserve it.

    I think that a healthy way of thinking is demanding reliable evidence or explanation. As a patient who is in search of further health improvement and tries to screen out junk science, I pose questions. This is not necessarily disstrust although where medical science ends, quacks necessarily show up (no reference to you).

    Good luck,
    Adam
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    [This Message was Edited on 02/10/2010]