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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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CBS success!

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Star-Anise, May 17, 2013.

  1. Star-Anise

    Star-Anise Senior Member

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    I just wanted to share some good news. I am blown away at the success that I have had by following Dr. Yasko's CBS protocol. I have been limiting high sulphur foods & supplements, as well as supplementing with Molybdenum & Manganese. I also did several bouts of activated charcoal/magnesium flushes. WOW! I now have been able to wean myself off all of my tyrosine & phenylalanine supplements, and feel amazing!
    I found her recommendation for Yucca to be too hard for my adrenals (contains natural saponin steroids), but the charcoal/magnesium worked great to get the ammonia down!
    I haven't purchased any urine strips, so I can't comment on any quantitative changes in that regard, but WOW, the changes in symptoms are encouraging. I am now going to experiment with weaning some of my serotonin support as well, but my understanding is that this might be more tricky as Tryptophan can be really impaired by gut function, which is where I am challenged.

    Star :)
     
  2. golden

    golden Senior Member

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    Clear Light
    :) Great News!
     
    Star-Anise likes this.
  3. Plum

    Plum Senior Member

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    That's awesome news :)
     
  4. RosieBee

    RosieBee

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    Star that's great news! I also have felt benefits from limiting sulphur foods and animal proteins; I am including molybdenum and charcoal flushes. I haven't used manganese yet. I find the yucca sprinkled on animal protein is ok - urine strips show I now get down to >400 sulphates regularly. I use the strips to monitor the effects of sulphur-rich foods, as the lists of foods on line often contradict or confuse. I find small changes have big effects on me, so I am taking it all very slowly, but I consistently have more stamina in a day. I am quietly hopeful that this is the answer to why treatments that work for others have either not worked for me or have made me more ill. Great to hear that you are having such remarkable results! :)
     
    Wayne, taniaaust1 and Star-Anise like this.
  5. Philla

    Philla

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    happy for your progress ! :)

    Just wonder if you would care to elaborate on the amounts of manganese and molybdenum you have been taking?
    Currently considering sulfate strips as a "poor mans" way of measuring Molybdenum needs.
     
  6. Hip

    Hip Senior Member

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    Star-Anise: Great to hear that. May I ask a few questions:

    How many days or weeks did it take for the benefits to appear once you started the CBS protocol?

    To what extent did you avoid high sulphur foods? Was it mainly just the cruciferous vegetables, diary products and meat that you avoided or reduced?

    How often did you do charcoal/magnesium flushes?

    Did have you have your genotype determined by 23andme.com, and if so, do you know which CBS mutation(s) you have? Myself, I am +/- for the CBS A360A mutation, so it's possible I may have sulfur problems.
     
  7. Jorlev

    Jorlev

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    Yes, I'd like to know more about your experience with charcoal flushes.
    Yasko seems to say take one or two capsules of charcoal once a week.

    It's true I do tend to over do things a bit with new protocols but one or two once a week doesn't sound like
    it's often enough to take care of ammonia. I know charcoal may bind other important nutrients so one wouldn't want
    to go nuts with it, but is anyone up on the safety of upping dosage / frequency?
     
  8. Star-Anise

    Star-Anise Senior Member

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    Hi everyone, here is what I took re: supp wise:
    a) Once I read Yasko's info re: ammonia buildup I immediately planned on doing charcoal detox. I happened to have some bulk activated charcoal on hand, so I just put about 1/8 teaspoon in a gelatin capsule and took it. Within a few hours it was amazing. My cognition started to clear, and I had emotions (increased creativity, happiness, peacefulness) start to arise that I haven't experienced since I got sick 7 years ago! It sounds fairy-tale-ish, I know, but it was rather remarkable. I repeated this once per day for several days, and my cognition continued to get more clear, and I had more and more of these balanced emotional experiences. I did do for say 3 days in a row, and have done this I would say a total of 3 times.
    b) I started taking magnesium citrate 300 mg, on the evenings of the days that I was taking the charcoal before bed. This helped me have a good movement the next am to help keep the charcoal moving through, as charcoal from what I experienced, and researched can be constipating.
    c) Within a few days of starting the charcoal procedure I started Molybdenum 150 mcg (I used the Rice Chelated product from New Roots). I started with one tablet, felt even better that day, and then went up to 3 tablets/day for about a week, and concentrated my doses when I ate protein foods. I now am taking one tablet (150mcg) per day, and have seemed to stabilize at that dose.
    d) With respect to diet, I was very strict for the first week & avoided all sulphur foods. I basically followed the list on this website with a few additions: http://www.livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/
    It became very easy to see what foods needed to be added to list for me, because I would feel AMAZING, and then AWFUL, ha, ha after eating the foods. The only addition I can think of right now would be mustard, which I don't see on this list.
    e) With respect to meat, I *did restrict* it for about 2 weeks, but *did not eliminate* it. I ate what I could to tolerance. With my adrenal fatigue/reactive hypglycemia, no-protein is simply just not an option. I felt that I compensated by taking the Molybdenum in conjuction with the meat when I did eat it.
    f) These diet changes were not that hard for me, because I basically have been living with dietary restrictions forever, and have been eating Paleo for years.
    g) After about one week of doing this, I added in Manganese, and felt that the positive changes were solidified even more (decreased fatigue, less post-extertional fatigue). I used 5 mg Manganese Bisglycinate (Trophic). I'm taking one per day.
    h) During this round of food elimination I noticed that I was still having some odd reactions to food. Sometimes fatigue related, sometimes agitation/racing thoughts. I connected it to high copper foods. Once I eliminated these as well, the results were astonishing.

    What is happening now:

    a) Amazingly I have been able to total eliminate all my Tyrosine and Phenylalanine supplements, which I have been taking for about 2 years, without any relapse. In fact, I have considerably more energy then I ever had when I was on them.
    b) I don't need to avoid meat entirely. During the strict period I noticed that the high thiol foods were the worst anyhow. I seem to have less problems with lentils as well. I'm sure if I ate them everyday then they would be problematic again.
    c) What I am eating: unfortunately as a lot of vegetables that were part of my normal diet are on high sulphur list, I have found myself relying more on fruit, which concerns me a bit because I have had candida problems in the past. So for now, I'm just going to watch it. I have noticed that my reactions to some high sulphur foods have decreased considerably like to onions (++agitation, emotionality, and foggy-head), because there was a little onion in something I ate yesterday and the reaction was far more muted than before. I am having smaller portions of meat, but will have some days when I'm eating quite a bit. I have found that the best meat has been beef, and I just tried Bison, and that went over well too. Chicken is more tricky I find. I don't have this all worked out but I believe in terms of copper balancing red meat is best, because it contains the highest amount of zinc to oppose the copper that is naturally present in all meats (from my rather rudimentary understanding). I have been eating squashes; they seem to work fine. I have also been strictly avoiding all non-organic fruit that I cannot peel. I had a real bad reaction to sulphites recently, and noticed that when I eat non-organic berries that they heavy fatigued feeling comes back with the brain fog.
    d)**I do notice that if I take the manganese and the molybdenum together that it does push me into overmethylation. I take the manganese in the morning, and I take the molybdenum when I have a larger portion of protein later in day at lunch or early afternoon. I have experimented with taking a 3rd dose of molybdenum if I have a larger protein supper as well with mixed results. I don't think I need it.
    e) Well I am still experiencing some energy blocks, and have now decided to go ahead with getting test through 23andme as I am quite sure that I have MTHFR mutations as well because I'm getting mixed results with Mb12, and other forms, as well as various forms of folate. I think the 23andme will allow me to just see the facts, and then work from there, instead of engaging in informed guesswork, which is what I have been doing up until this point. It worked for the CBS issue, and I will share my actual mutations once I get my results for everyone's learning, but now it is getting too complicated trying to figure out what MTHFR or other mutations I "may" have, and how to work with them.
    f) While I have had much success with re-activating my own dopamine pathways and no longer need supplementation, I haven't had as much success with the serotonin pathway. I tried to decrease it just a tad, and had quite an increase in fatigue. My hunch that some other mutation is playing a role here, or it might still be related to compromised gut function. In Yasko's book she talks about how deteriorated gut function can lead to Tryptophan being used up too quickly.

    I definitely feel encouraged! With these recent results I would say I'm back to 75% of my pre-sick best on a good day. Now to work on those days when my energy is still off... :)

    All the best,

    Star:)
     
    Wayne, taniaaust1, Sidereal and 9 others like this.
  9. Star-Anise

    Star-Anise Senior Member

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    Hi Jorlev:
    Yes, I'd like to know more about your experience with charcoal flushes.
    Yasko seems to say take one or two capsules of charcoal once a week.

    It's true I do tend to over do things a bit with new protocols but one or two once a week doesn't sound like
    it's often enough to take care of ammonia. When I first started I did once per day, 3 days in a row, for about 2-3 weeks. I then did it maybe another time for only 2 days. I know charcoal may bind other important nutrients so one wouldn't want
    to go nuts with it, but is anyone up on the safety of upping dosage / frequency?I was quite careful to take it at a time away from my other supplements as she suggested. I would start at the recommended dosage/frequency & combine with strict diet (as much as is possible). I would be worried that it could lead to a crash if you are too aggressive, which would be counterproductive. I did find that I had quite a bit of minor detox symptoms (sweating, hot flashes) & I wouldn't have wanted these to be overwhelming for me, and plus it can be quite constipating. Do you have CBS mutations that you know of?

    Star :)
     
  10. Jorlev

    Jorlev

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    I'm CBS C699T HTZ. Wondering if there's any what to quantify the difference between HTZ and HMZ with C99T.
    Is HTZ half as bad as HTZ? 1/4? 3/4? Anyway, Haven't tested ammonia but my Quantofix Sulate Strips test at about
    1200. Using Yucca with each meal and want to use charcoal more but don't want to strip out nutrients.

    Been off all supplements for a month cause I will be testing shortly and want to see what my body is doing in it's natural state.
     
  11. Star-Anise

    Star-Anise Senior Member

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    Hi Jorlev: I will share my results and then maybe we can compare. I won't have results for awhile cuz I'm ordering kit this wknd. I do, however, still maintain that I think my success is based on a foundation of gut health. I have been working for some time to restore gut health. It started a few years ago with my metametrix test that indicated I had parasites (picked up in India), and really out of wack yeast, and bacteria. I did a series of yeast cleanses that also targeted the bacteria using a product called ADP from Biotics Research instead of the more traditional caprylic acid, oregano oil, or grapefruit seed extract that people usually use. The results at that time were quite remarkable, but I think that because my mechanisms to clear out ammonia buildup are likely forever impaired, my overall recovery has always been impacted despite more balanced gut. Yasko speaks about role of gut health in her book, as many bacteria and yeast are ammonia producing organisms. So despite whatever we do with diet, or flushes, we are fighting a losing battle if our gut is full of yeast & bacteria. I have a hunch that this may be why some people do not notice as great of results with the CBS protocol, as well as the obvious answer that there is just something else entirely going on that is not related to sulphur and ammonia. I think your approach of slowly using charcoal is a good one.
     
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  12. Jorlev

    Jorlev

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    I, too was in India. It was back in '97 and I did have a weird episode of feeling foggy and dizzy when I got back.
    Wonder if parasites were involved and if they could still be lingering this long after?
     
  13. Star-Anise

    Star-Anise Senior Member

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    Jorlev: I would be highly suspicious of any opportunistic bacteria, yeast, or parasites that may have accumulated as a result of your India trip, and perhaps just on their own. Yasko speaks at length in her book in regards to the potential role of bacteria:

    "Both the literature and my personal clinical experience indicate that bacteria can harbor aluminum, which inhibits BH4 synthesis—which is already compromised with MTHFR A1298C mutations. As you progress through the program,
    if you have this mutation it’s vital to address systemic aluminum, thereby removing a significant impediment to BH4 recycling. While keeping the ammonia levels under control is of paramount importance for everyone, with an MTHFR
    A1298C mutation it’s particularly important, since excess ammonia drains BH4 levels, already compromised by the conversion problems caused by this mutation. In addition, the early portion of the Krebs cycle may be blocked due to aluminum toxicity. Since aluminum retention is related to chronic bacterial loads, the MTHFR A1298C mutations can limit the body’s ability to address bacterial infection, making it important to focus on the gut program, run regular CSA tests (which indicate bacteria loads), and supplement with supports for chronic bacteria."

    My own experience with my recovery (in process to this day) is that my gut health has played an essential role. The MTHFR A1298C mutation is definitely flagged on my list to determine my status for when I get my results back from genetic testing.

    Some important tips that I can pass on from my own experience/research:

    a) I believe that I have always had gut problems, even pre-India, while I don't have this mechanism entirely figured out, I do believe I struggle more than the average healthy person with avoiding yeast build-up and clearing out my gut in general. I have to avoid all refined sugars, and highly processed goods with the "white's" (white flour...). I eat gluten free, not because I have been diagnosed as a celiac, but I recognize the potential toxic nature of gluten to the gut, and I know that I need to be as kind and gentle on mine. I think that I have a baseline lactose problem, which is essentially milk sugar. At times when I have consumed dairy, I think that I have put my gut at higher risk of developing yeast problems due to my inability to deal with the sugar. I do believe that this might be a common mechanism for some people with CFS issues.
    b) Before India, I did do a "yeast-buster" cleanse or two, and experienced some good results. I went through a phase when I was following a hard core gut detoxification program as outlined in the blood type protocols utilizing harsh (in my opinion) things like wormwood, and cloves to kill whatever may be there. I had mixed results with this.
    c) Since India, I have come to appreciate the importance of using the right products to kill the specific gut pathogen that I have had. When I did my metametrix test my yeast were found to be immune to caprylic acid, which I had used various times previously. I could have used this again, and again, which is the most commonly prescribed yeast-killer that healthfood stores sell, and it wouldn't have done anything other than caused my body more and more distress.
    d) With some people that I'm informally mentoring I often suggest that we need to work like snipers, and zero in with the right target. I believe that the gut-testing really allows one to cut to the chase and do just that.
    e) from what my naturopath shared with me, he would never use any other test than metametrix. It's costly, but they use DNA technology that cannot be rivaled apparently. They have had mixed results from other companies.
    f) My test showed extremely high levels of Morganella, which is an opportunistic bacteria, and I had a parasite: Blastocystic Hominis. Very common parasite that traveller's pick up, but my current naturopath has a sister that contracted it from a horrible experience of almost drowning and consuming large amounts of lake water in Canada.
    g) I just recently completed the triple-antibiotic therapy, which is the leading treatment through the Centre for Digestive Diseases in Australia. This has really sealed the deal in regards to my energy levels. Wow. I am planning on doing another test through Metametrix to ensure that I got rid of the Blasto parasite. What I am sure of is that I knocked it's numbers down, as my carbohydrate tolerance has increased dramatically.
    h) And I did all of these cleanses/treatments before I did the CBS protocol, which I feel has been the icing on the cake for me.

    My questions for you:
    a) Did you notice any acute exacerbations of symptoms following your trip to INdia?
    b) With most parasite/yeast/bacteria gut problems, one would experience some symptoms like bloating, gas, especially to sugar & carbs, or IBS like symptoms. Not all the time, but usually.

    I know that the last thing that I feel like is shelling out $ for another test as I have already spent 10s of thousands of dollars on various alternative treatments in my journey. I could share the yeast cleanse that my naturopath gave me. I have a friend that recently did it without the gut test, and found that her energy increased quite a bit and some of the gut problems she was having were eliminated. I am a firm believer that anyone eating the Standard American Diet that consists of highly refined carbohydrates often laden with sugars would benefit from a yeast cleanse every so often just to help balance the gut. It is quite possible that you would experience some gains, if you haven't done a cleanse of this sort before especially.

    The important question however would be whether your system is currently strong enough to support any cleansing activity.

    In health,
    Star :)
     
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  14. Jorlev

    Jorlev

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    As I mentioned, it was in '97 so I can't really recall specific symptoms other than a strange pressure in my head and ataxia. Oddly, a year and a half ago I had a bad stomach virus and had the recurring sensation in my head and ataxia once more. I don't have CFS. I have a pins and needles from small fiber neuropathy that started in my feet 6 years ago and has progressed all over my body. I'm MTHFR A1298C HMZ, VDR Taq HMZ, CYP1B1 HMZ, and CBS C699T HTZ. I have 2 MTRR HTZs and other HTZs that no one has really delved into yet.

    I know there are supplements that help with the processing of sulfur like molybdenum, but was wondering if there are any things to take that might actually absorb excess sulfur like Yucca does for ammonia?
     
  15. Star-Anise

    Star-Anise Senior Member

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    @ Jorlev: I am certainly no expert @ this. MTHFR A1298C HMZ - does that mean a mutated expression? I found this by Dr. Ben... seems useful, you may have seen it: http://mthfr.net/mthfr-a1298c-mutation-some-information-on-a1298c-mthfr-mutations/2011/11/30/
    re: question about sulfur - unsure of anything other than what Dr. Yasko recommends in her book. You can download it for free - do you have it? Star :)
    Just google Yasko book free download and it should pop up as a PDF :)
     
  16. Hip

    Hip Senior Member

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    I believe that being heterozygous (+/-) in any SNP (such as CBS) means that the mutated gene may express itself, but might not. In other words, heterozygous mutations may or may affect you. Whereas if you are homozygous (+/+) in any SNP, you are 100% certain that this mutated gene is expressing itself, and so is definitely affecting you.

    Incidentally CBS C699T is I understand quite a potent mutation, being 40 times worse than the CBS A360A mutation.
     
  17. Jorlev

    Jorlev

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    So what you're saying is homozygous and heterozygous are only levels of potentiality of having the gene expression.
    Homo is 100% expression and Hetro is 50/50 or if not that percentage, maybe / maybe not. Does that mean that if
    hetero and the gene mutation is expressed that it's just as bad and full homozygous? I'd have to verify this. I thought it was two different levels of mutation or impairment, not different probabilities that the light switch was on or off. Interesting.
     
  18. Jorlev

    Jorlev

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    Got this description from a genetic site:


    What is the difference between homozygous and heterozygous?


    Humans contain two copies of each gene, one from the father and one from the mother, which sometimes are referred to as the alleles of a gene. If a mutation occurs in just one copy of the gene then that individual is considered heterozygous. On the other hand if both copies of a gene are mutated then that individual is homozygous genotype.

    Majority of hereditary disorders are harmful if both copies or alleles of a gene are affected, which means protein products from both genes may fail to operate properly. In such cases immediate medical attention is needed so the function of a defected protein can be restored through medication. In heterozygous genotypes one copy of the gene is healthy and can produce fine proteins thus these individuals are usually not affected and are considered just carriers. However in a few hereditary disorders heterozygous individuals may suffer from a milder version of the disease.
    -------------------------------------------------
    seems hetero can leave you unaffected or with milder versions of full homo.
     
  19. Hip

    Hip Senior Member

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    Yes, and it seems that the expression of a SNP depends on whether the gene is dominant or recessive.

    If a gene is dominant, then even if you have just one copy of the SNP mutation (heterozygous), it will be expressed.

    But if the gene is recessive, then one copy of the SNP mutation will not lead to expression. In the recessive case, you need two copies of the SNP mutation (homozygous) before expression occurs.

    However, from what I have read, it seems that these dominant/recessive models of gene expression are somewhat of a simplification, and as I understand it, genes do not always precisely fall into these neat dominant/recessive categories. I think there is also an additive category, in which the level of expression is proportional to the number of SNP copies you have.

    I would like to see a list indicating which of the various methylation-related SNPs are dominant, recessive or additive.


    In any case, given the above confusion, we can fall back to a general rule of thumb, which is that two copies of a SNP mutation will affect you; one copy of the SNP mutation may affect you.
     
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  20. Jorlev

    Jorlev

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    How do you determine if your gene is dominant or recessive?
     

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