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Where are we on understanding and treating ME/CFS today?

Discussion in 'General ME/CFS News' started by richvank, Apr 4, 2012.

  1. WillowJ

    WillowJ Senior Member

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    hi Rich,

    thanks for all the info.

    I am also concerned about permanent/semi-permanent nerve damage. Can you discuss this?
  2. richvank

    richvank Senior Member

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    Hi, WillowJ.

    Peripheral nerves have quite a bit of capability to regenerate, so if the pathophysiology is fixed, I'm hopeful that they can come back alright. I think the central nervous system is of more concern, because I think only the hippocampus has been found to be able to produce new neurons, and excitotoxicity can destroy neurons. I recall that Dr. Cheney used to justify his use of Klonopin (even though it can be habit-forming and can be difficult to get off of) by saying that he wanted to preserve the brain so that his patients would still have one when they recovered from CFS. I'm looking forward to finding out whether the new "Calm Down" spray that Amy Yasko is coming out with will effectively control excitotoxicity, because this is something that is really needed, in my opinion.

    Best regards,

    Rich
    WillowJ and justy like this.
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Nerves can heal if you give them what they need. I am doing great. I learned all I could about how to do it and everything nerves need. Microcirculation has to be restored. Nutrients, the best nutrition, low carbs, very,very low sugar and exercise to bring blood to the nerves, to the tiniest places. They have to have oxygen, no toxins and the supplements that heal like l carnitine, b vitamins, alpha Lipoic acid and Benfotiamine.
    Allyson, place and WillowJ like this.
  4. xchocoholic

    xchocoholic Senior Member

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    I'm not up on dr yasko's calm spray but theanine is considered the natural alternative for klonopin and it works the same for me. I use it to stop my myoclonus which to my knowledge is always triggered by gluten which is a high glutamate food / excitotoxin but also can cause a reaction on it's own due to it's protein.

    In addition to theanine, I need melatonin and 5htp for the insomnia it causes. I tried gaba a couple of times but I didn't respond well.

    The reason I'm concerned about permanent damage is that while I eliminated most of the gluten from my diet in 2005, I'm still reacting to it with myoclonus and insomnia. I obviously had some today or else I'd be asleep by now.

    And my ataxia that went away after one year on this diet returned when I had to take klonopin for a few weeks after having a two hour seizure and when I took benadryl. I failed the rhomberg. This indicates damage to the cerebellum.

    So after all these years, 6 now, my brain hasn't unlearned reacting to gluten. My stool tests show that i over produce gluten antibodies to minute amounts to gluten. My understanding is that antibodies can block nerve fibers making them faulty.

    Fwiw, I've been on a healthy diet, paleo, mostly low carb from 2008 until recently and it didn't help anymore than the gfcfsf + chemical free diet had already.

    I'm still experimenting with supplements but nothing has helped heal my body yet. I suspect my gut is damaged, probably permanently, from eating gluten and too many toxins for 50 years.

    I hope I don't sound like a downer. I'm just trying to be realistic. I consider myself as doing well until I look at how easily my body returns to the state it was before I started healing.

    My sleep supplements are working now. So good night all .. .. X
    WillowJ likes this.
  5. Rrrr

    Rrrr Senior Member

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    i look forward to reading this thread, rich.

    as always, you are a huge asset to our community. i am so grateful that you continue to be interested in our wretched illness.

    best,
    rrrr
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  6. undcvr

    undcvr Senior Member

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    "Again, based on experience up to now, I would say that the fundamental pathophysiology is the same in nearly all cases of ME/CFS, and it involves a chronic vicious circle mechanism that includes depletion of glutathione, a functional deficiency of vitamin B12, a partial block of methionine synthase (which links the methylation cycle with the folate metabolism), and loss of folates from the cells. Essentially everything else in ME/CFS (other than direct effects of pathogens or initial toxins) stems from this vicious circle. This is elaborated in the Swedish seminar here: http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D"

    At this moment and my own personal experience I don't agree with any of this. I have been on

    5mg of MB12 Jarrow's
    7.5-15mg Deplin or Leucovorin
    3-4gm of NAC
    200mg of S-acetyl-gluthatione

    daily for over a year. All this plus Valcyte and Famvir/Valtrex, I did not feel that it got to the main cause of my CFS. It was when I took detox specific supplements (bile, diuretic, fiber) that I really felt better and that I had recovered, sometimes from the very first dosage.

    I do however completely agree that ME/CFS is due to a broken down detox system that has completely stalled and really needs to be seen to constantly to get it going. Everything other facet of ME/CFS symptoms start from this.
  7. nanonug

    nanonug Senior Member

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    Well, the detox system is profoundly dependent on the methylation cycle. I would therefore posit that you are in complete agreement with richvank! :)

    By the way, with so much NAC, you probably increase the amount of oxidative stress in your body.
  8. justy

    justy Senior Member

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    Thanks Rich for your thorough and informative responses to my questions. I am one of the 700 who has watched your semionar in full, some while ago and i had forgotten most of what you said in relation to my questions (the brains not what it used to be!)

    I am interested to know how many people feel they have either completely or significantly recovered from M.E/CFS by using the SMP? if it is the methylation cycle mechanism that needs fixing, plus some antiviral and anti bacterial and antifungal support, why arent more people recovered?
    BTW i do feel this theiory has a lot of validity - im asking the questions in a spirit of discussion to help us understand better.

    Another question i have is how the do you think:
    Treatments such as antivirals and Ampligen are working, even if the person is not also working to lift the MCB?
    B cell depleting chemotherapy drugs are working - ie how do these scenarios fit with the MCBH?
    All the best, Justy.

    P.S one last question - what about those like me who have in the past had long remmissions? in my case not by following any particular medical treatment beyond alternative therapies and rest, but who have then become much sicker later on in life?
    xx
    Allyson likes this.
  9. richvank

    richvank Senior Member

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    Hi, xchoc.

    Thanks for sharing your experience. I'm glad that you have found things that help with sleep. That's big.

    Sounds like you have major challenges with your gut and your nervous system.
    I don't know if endoscopy would be feasible for you, but if so, it might tell you what the condition of the early part of your small intestine is, i.e. whether the villi are intact or not. If the villi have been damaged, it may be possible to build them back. Folate is necessary to make new cells, and B12 is necessary to keep the folate inside the cells so that it can do its jobs.
    I wonder if you can tolerate glutamine, or does that convert to glutamate and provoke the myoclonus? Glutamine is the main substrate for the enterocytes.

    I hope things will improve for you.

    Thanks again.

    Rich
  10. richvank

    richvank Senior Member

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    Hi, Rrrr.

    It's good to hear from you! Yes, I'm still plugging away at this, and would really like to see it cracked!

    Best regards,

    Rich
  11. richvank

    richvank Senior Member

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    Hi, undcvr.

    Thanks for the response.

    I'm sorry that your body did not respond to the methylation-type treatment, but glad that the detox supplements did the job for you. I agree that toxins can be the thing blocking recovery.
    I don't know if you read my whole blurb, but I suggested toxins as one of the possible causes of lack of response to methylation treatment, so maybe we are not so far apart in our thinking. Perhaps you were able to build up your B12 and folate with your hefty dosages, so that when you removed the toxins that were blocking enzyme function, your methylation cycle and sulfur metabolism were ready to take off. You certainly did hit your sulfur metabolism with big hammers! As you recover, you may want to consider lowering these dosages.
    That really is a lot of NAC! And I suspect that the combination of high methyl B12 and high methylfolate is seriously overdriving your methylation cycle. Maybe now that you have dealt with the toxins successfully, you can let your methylation cycle and sulfur metabolism get into more normal operation.

    Thanks again.


    Best regards,

    Rich
  12. Ian

    Ian Senior Member

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    I'd say dental problems are the cause of most peoples CFS. Most people have all kinds of serious infections in their mouths, most silent and painless. Not to mention metal toxicity and sensitivity to metals used in dentistry, or the cocktail of other poisons used in root canals etc. It's never ending.
  13. richvank

    richvank Senior Member

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    ***Hi, justy.

    Thanks Rich for your thorough and informative responses to my questions. I am one of the 700 who has watched your semionar in full, some while ago and i had forgotten most of what you said in relation to my questions (the brains not what it used to be!)

    ***You're welcome. Thanks for doing me the honor of watching the whole thing!

    I am interested to know how many people feel they have either completely or significantly recovered from M.E/CFS by using the SMP?

    ***I'm very interested in that, too! Unfortunately, I only know of a handful, maybe 6. Of course, I hope there are more whom I don't know about, but I think they would have let us know if they really were completely recovered. There are a couple that I hear from once a year or so, like at Christmas. Of course, I hope there are no relapses, but with ME/CFS, I think that there will always be the genetic predisposition, so if the stress load becomes too high again, and the antioxidant system drops too low, I'm afraid that a relapse is possible.

    ***With regard to "significantly recovered," I guess that is a matter of individual judgment. Quite a few people report that they have benefited, and in our clinical study, the statistical analysis of the responses on the visual analog scales for symptoms indicated statistically significant improvement in about two-thirds of the patients.

    If it is the methylation cycle mechanism that needs fixing, plus some antiviral and anti bacterial and antifungal support, why arent more people recovered?

    ***That's exactly the question I am trying to address now. I think we still have some distance to go in identifying and treating these pathogens.

    BTW i do feel this theiory has a lot of validity - im asking the questions in a spirit of discussion to help us understand better.

    ***I understand. I am on the same page with you in asking these questions. They are the right questions to ask!

    Another question i have is how the do you think:
    Treatments such as antivirals and Ampligen are working, even if the person is not also working to lift the MCB?

    ***Another excellent question! If the pathogens are truly knocked out, will the vicious circle mechanism be corrected without directly treating it? I don't know. If people are getting completely well from these treatments, it would seem so. Do you know of people who have completely recovered from ME/CFS after treatment with Ampligen or antivirals? I know of quite a few who report that antivirals did not bring them recovery. Some people seem to have to stay on Ampligen to continue feeling better. On the other hand, of the people who have seemed to completely recover after methylation treatment, most seem to have done other treatments, such as antivirals, before, but were still ill, and the methylation treatment seemed to be the last thing they needed. Maybe this is an individual thing, and different people respond differently.

    B cell depleting chemotherapy drugs are working - ie how do these scenarios fit with the MCBH?

    ***Again, a wonderful question! I don't believe, based on the evidence I've seen, that ME/CFS is an autoimmune disorder. I realize that not everyone agrees with this. But if it's true, then the B-cell depleting drugs must be working in a different way in ME/CFS than eliminating an autoimmune response. My guess is that they are lowering inflammation, and this is enabling glutathione to come back up. For those who recover completely, this would again suggest that if the things that are placing demands on glutathione can be removed, the vicious circle mechanism can recover on its own, without methylation treatment. Well there are a lot of "if's" there, and I think we are going to have to wait to see what's going on with these treatments.

    All the best, Justy.

    P.S one last question - what about those like me who have in the past had long remmissions? in my case not by following any particular medical treatment beyond alternative therapies and rest, but who have then become much sicker later on in life?

    ***My guess is that glutathione became somewhat depleted, and you (and others "like you") were able to come back out of the vicious circle, but then later, for whatever reasons, glutathione became depleted more seriously, and you went deeper into the vicious circle mechanism, so that it is now more difficult to climb back out of it.
    xx

    ***Thanks for the challenging questions. These are the things we need to be pondering. I would say that your brain is operating pretty well at the moment! :)-)

    ***Best regards,

    ***Rich
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  14. richvank

    richvank Senior Member

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    Hi, Ian.

    Over the past 15 years, I have encountered a few cases in which dental issues certainly were key. Some involved constantly sore or swollen lymph nodes, which were corrected after the infection was cleared out of the gums. And mercury in amalgams definitely is a source of mercury buildup in the body, after onset if not before. There could well be "stealth" dental problems going on in other cases.

    Best regards,

    Rich
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Rich,

    I also watched your full video and was very proud of you and even more appreciative of all you do for us.

    Like others, I'll also add a few thought from personal experience.

    As you know I was one of those who responded partially to the Simplified Methylation protocol--but hit a block something like a year and a half into it. I did a lot of detox work with a practitioner who used Dr. Cowden's laser energetic detox--mostly environmental toxins and heavy metals. My practitioner also worked herbally with some infections. After this I was able to tolerate the methylation supplements again. So it seems that toxins and heavy metals can be somewhat of a barrier to full success with the Simplified Protocol

    I later went to a doctor who did a great deal of testing of the immune system, the gut, neurotoxins etc. Again, there was a lot that was very abnormal. I had a huge anaerobic gut infection, dysbiosis, and very high readings on elastase expression, perforin mRNA expression, and moderately high C4a and soluble CD14 (to name a few!).

    I was given antibiotics for the gut infection (mainly xifaxin), other very strong digestive supports, GcMAF, Nexavir, and injected Hydrox B12. Very slowly symptoms began to improve which suggests both problems with the rampant gut infections and viruses (I had always tested high on reactivated EBV) and I am sure I have some others too.

    After nearly a year on this protocol, many of my tests are back in the normal range--C4A, Soluble CD14, perforin and elastase expression and EBV is just slightly out of range. Nagalase (which seems to be given off by several "bad guys,") was close to being in range and by now probably is.

    Re: killing off B cells as a strategy, it is quite possible that B cells are not the only thing that is infected with "whatever" is infecting us. Infections may be hiding in areas that are harder to reach and perhaps that is why some in the retuximab trial had to take further courses--they were reinfecting themselves.

    Given some people's success with different antivirals (or substances like GcMAF which promote the immune system to deal with pathogens) and antibiotics, it seems like this is an area that most people have to address in one way or another. I think the protocol I am on also supports the methylation cycle and some of the benefits I am seeing are probably coming from improved methylation.

    As we all know, this is a very complex syndrome with a lot of individual variations, so thanks for starting a thread like this where we can share some of our thoughts and experiences in one place and add to the cumulative experience.

    Best wishes,
    Sushi
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  16. richvank

    richvank Senior Member

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    Hi, Sushi.

    Thanks for sharing your odyssey! I'm learning a lot from you!

    Best regards,

    Rich
  17. Ian

    Ian Senior Member

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    The majority of dental infections are completely invisible to x-ray. The reason is, because the infection/necrosis in in the marrow space in the bone. Not to mention the fact in order for an infection to show up it's well known that at least 50% of the bone must be destroyed before anything is visible.

    Pictures say a thousand words. This is how I got better.

    http://i126.photobucket.com/albums/p95/dukeeeey/dental stuff/Untitled-1.jpg

    Better pic of the MRI if you are interested
    http://i126.photobucket.com/albums/p95/dukeeeey/dental stuff/mri-1.jpg
  18. WillowJ

    WillowJ Senior Member

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    thanks Rich, and also Sally and xchocoholic

    Calm spray sounds interesting, though I don't know anything about it.

    Regarding CNS, particularly in light of Jason's model, I think anticonvulsant medications (such as those used as primary therapy for migraines) might be appropriate and protective, and there might be possibly safer/less sedating options than Klonopin on the lists? that's a cardi/respiratory depressant, yes?

    (and I think the Lights found that gabapentin reduced PEM; but many PWME and PWFibro find that difficult to tolerate, even if it helps... it is contraindicated in absence seizures and therefore possibly not a great idea for PWME, anecdotally some of us seem to lose time and thus might be having these)

    Looking at the mechanisms for anticonvulsants in general, are there some that seem more useful for PWME, theoretically? I'm not able to put all the ion channel pieces together atm.
  19. hixxy

    hixxy Woof woof

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    With that amount of NAC your glutathione synthesis is likely limited by some other factor (glycine, limitations on the enzyme converting cysteine to glutathione)? What's not being used to synthesize glutathione is likely not doing you much good.
  20. richvank

    richvank Senior Member

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    Hi, WillowJ.

    Sorry, I don't know much about the drugs. I'm pretty focused on the orthomolecular approach.

    Best regards,

    Rich
    WillowJ likes this.

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