methylation/glutathione protocol thread3

Discussion in 'Fibromyalgia Main Forum' started by deliarose, Mar 30, 2007.

  1. deliarose

    deliarose New Member

    hi all
    thought i would start a new thread. Last one was getting unwieldy.

    I think i'm in my 6th week and I'm doing great. Off the sleep meds 6 weeks now (after 7 YEARS) brain feels clearer and clearer.

    But I've been doing some freelance work and that really shows me I've got a ways to go yet. Concentration is terrible, and thinking is still somewhat spotty.

    Have been struggling with daytime sleepiness, but that doesn't seem so bad last couple of days.

    I'm just obsessing a bit about all the damage I've done in 10 years, esp. the cognitive stuff. But not much i can do about that.

    Otherwise, I'm really thrilled to be doing so well. I wonder if there comes a time when you can increase the dosage to speed up the detox, once you're not feeling any adverse effects from the regime?

    Rich? Any thoughts?
    Delia


    [This Message was Edited on 03/31/2007]
  2. richvank

    richvank New Member

    Hi, deliarose.

    Glad to hear that things are still going in the right direction for you.

    It may take some time to get your brain back in shape. I think the reason for that is that methylation is needed to make myelin basic protein (MBP). MBP is one of the main constituents of myelin, which serves as the electrical insulation around nerve fibers. One of its main effects is to allow nerve impulses to travel more rapidly than they could without this insulation. I think that's why one of the most reproducible brain deficits in CFS is that neural processing is slowed down. The methylation cycle is partially blocked in CFS, and as a result the methylation capacity is reduced, and the normal repair and maintenance of the myelin sheaths does not take place.

    In Amy Yasko's full treatment approach for autism, her step 3 (discussed in The Puzzle of Autism book) is designed to promote remyelinization of the brain. She has suggested that PWCs may not need as much of this as autistic kids, because their brain was fully developed at onset of CFS, while the kids did not have completely developed brains when they got autism before age 3.

    Yes, I think that after you get through the detox phase, you will be able to take larger dosages, and that may help. You could also take a look at Amy's step 3, to try to help your myelin get back up to normal.

    Rich
  3. Slayadragon

    Slayadragon New Member

    I tried the nebulized glutathione today. The only change that I observed afterwards was the development of a mild headache.

    Of course, the headache could be from something else. (Notably, I've been increasing my Famvir dosage.) However, I'm wondering if it could be a detox reaction.

    Not that there's anything wrong with that, necessarily. My doctor wants me to focus my energy on viral killing now (and detox later), but I seem to be tolerating the antiviral well enough now that maybe a little detox wouldn't hurt.

    Anyway:

    * Do you think the headache might be related to the nebulized glutathione?

    * If so, is there anything that you would suggest that I might modify in light of it?

    * And if it is related to the glutathione, do you think this reaction will continue at this level over time, or maybe fade (or get worse)?

    Thanks much for the info about different sorts of B12. It sounds like it would be best if I stay with the hydroxy for the time being, and then (after I start to pursue detox again) see how I'm doing and maybe explore changing if I don't get the results that I would like (or that other folks successful on the program are getting).

    Best, Lisa
  4. deliarose

    deliarose New Member

    Do you have any sense of how much of the damage is reversible? Have you been able to speak to any clinicians to discuss what they are seeing in recovering long-time CFS patients?

    I was mulling this last night, and I was thinking there's just no data. ....and then it occurred to me that that's because there are so few recovering PWCs.

    I had an MRI some time back, and it didn't show any lesions, so I guess that's something.

    Dosage: any advice on how far I can go?
    delia
  5. Slayadragon

    Slayadragon New Member

    Hi Rich,

    As seems to be the case with Delia, my main frustration with this illness has been my cognitive functioning. I can live (if necessary) with limited energy, but getting my brain back so that I can do academic-type work is something that I seem to be willing to move heaven and earth (and go to the depths of hell) for.

    I realized recently that although I seem to be able to think and write, my ability to process external information seems really limited. I have a hard time reading papers and books that I used to breeze through. And editing/organizing my own work (once it's out of my brain and on paper) is exceedingly difficult too.

    Comprehension of oral materials is even worse. I seem categorically unable to bring myself to watch those Cheney DVD's because they're way too exhausting, for instance. (If they were in written form, it would be more challenging than before I got sick but at least doable.)

    It's sort of like my brain is in a very dark room with just a nightlight. I can still think and write, but trying to "read" (e.g. get info from outside into my head) is really hard.

    The only thing in my entire illness that has helped was Provigil. The one time I took that, it was like all the lights came back at full force and my brain was exactly the way it was before I got sick.

    (Unfortunately, my exhaustion following the Provigil was so intense that I can't use it, at least at this time.)

    So question: do you think that the Provigil would be capable of cutting through the negative effects of a glutathione usage deficit?

    Or do you think it's more likely to have addressed the lasting effects of a concussion I had shortly prior to getting CFS?

    (Or maybe, as was suggested to me the other day, it's a combination---that viruses etc. tend to settle in weaker parts of the body, which in my case could be certain areas of my brain.)

    In the end, I guess it doesn't really matter. If my cognitive dysfunction is due to the brain injury, I still want to cure the CFS, since that will (assumedly) allow me to use Provigil on a regular basis and thus maybe keep the lights on. I don't really like the idea of prescription medicines in general, but a girl's gotta do what she's gotta do.

    I just thought it would be interesting to see if you had any thoughts.

    My best regards,

    Lisa
  6. richvank

    richvank New Member

    Hi, delia and lisa.

    Here's what I have to work with: theory, which I base on what I think makes consistent sense from known biochemisty and physiology, lab tests on PWCs, published research, and what clinicians and PWCs tell me, and then whatever experience there is with the treatment that comes out of the theory. I have lots of theory, but not much treatment experience to look at yet. The autism people are way ahead of us, so there is experience there, and some of it is very good. I've seen kids interviewed on stage at autism conferences who were just as sharp as can be, real comedians even, who had been, sad to say, basket cases before, as documented in videos, which were shown. Bear in mind that these kids got sick before their brains had completely developed. You guys clearly had wonderful brains at the time you got sick. If they can improve that much, I think you should be able to, too. So I'm very optimistic about your getting your brains back in good shape.

    You're right Delia. Curing CFS has not really been done in the past, at least not on much of a scale. It really blows my mind now to hear people here talking about the adjustment problems they are having to deal with in their relationships now that they are getting well! That's a new problem for me! I think maybe the person to deal with that is Pat Fennell in Chicago. She's the one who talks about the stages of illness people go through and how to cope with them. Maybe she could turn her system around backward and show people how to deal with getting better! Maybe I'll send her an email.

    Rich

  7. richvank

    richvank New Member

    Hi, lisa.

    I'm not too big on using Provigil in CFS. I don't think it's known how Provigil works. It apparently stimulates certain parts of the brain. Since my understanding is that the neurons are already more excited than normal in CFS, I'm not sure that this is a good way to go.

    Rich
  8. richvank

    richvank New Member

    Hi, lisa.

    I'm not too big on using Provigil in CFS. I don't think it's known how Provigil works. It apparently stimulates certain parts of the brain. Since my understanding is that the neurons are already more excited than normal in CFS, I'm not sure that this is a good way to go.

    Rich
  9. Slayadragon

    Slayadragon New Member

    That's a good point about the autism. Thanks for cheering me up.

    For some reason the cognitive stuff has seemed to be particularly hard to get back,even though I've chipped away at a lot of the other manifestations of my illness over the years.

    On the other hand, maybe it's just that my standards in that area are particularly high.

    Perhaps if my focus pre-illness had been physical rather than intellectual, I'd be annoyed if I never could go for a half-hour run or something similar. But for me, being able to go for a leisurely mile-long walk on occasion would be perfectly fine....if I were to get my brain back.

    That reminds me, btw, that my desire and ability to get that kind of exercise was quite high for the first several weeks that I was on the methylation cycle block supplements. More so than at any point since I started the Famvir, actually.

    So upon reflection, maybe it was _only_ the bad SAMe/doxepin reaction that had any negative/stressful effect on me at all. I keep thinking the methyl supplements were hard on my system in combination with the AV, but perhaps that's totally wrong.

    Well, I'm being cautious and thus am going to try to adjust to this new dose of Famvir (which I seem to be doing fine with thus far).

    After that though, perhaps I'll cautiously go back to small amounts of the folate supplements (if not the SAMe). It seems worth a try anyway, and sooner than before I squeeze all the juice out of the AV's.

    And perhaps Kelly (empty2void) shouldn't be too dissuaded by my experience either. Caution is always a watchword when combining treatments, but that doesn't mean we shouldn't ever do it.

    Thanks for bringing this info to the board.

    Best, Lisa
  10. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    I will be interested to hear Rich's responses to your comments.

    How are you doing on the antibiotic? When did you add it? Do you think it's helping?

    Was it Montoya who prescribed it, or someone else?

    Have your bone marrow counts remained stable since you've added it?

    Also, do you happen to know anything about ProHealth's mycoplasma transfer factor (which isn't listed but apparently sold if you call and ask)? I've had totally debilitating yeast problems (severe vertigo from resistant yeast growing into my inner ear) in the past, and so alternatives to antibiotics interest me a lot.

    I've tested positive for both mycoplasms and chlamydia pneumoniae at various points in my illness, and so it's interesting to hear how they're being treated by various doctors.

    This is relevant to this particular thread because how well you're doing on the antibiotic as well as the Valcyte would affect your potential experiences with regard to the methyl cycle block supplements, I would think.

    Best, Lisa

    [This Message was Edited on 03/30/2007]
  11. richvank

    richvank New Member

    Hi, Kelly.

    Yes, people are finding that if they back off on the supplements in the methylation block treatment, the detox will slow down. Some people take a little holiday every so often, and that seems to help them a lot. For one thing, they get a break from the detox symptoms, and for another, they can usually note improvements in their condition since the previous "holiday." That can be really encouraging.

    Rich
  12. Slayadragon

    Slayadragon New Member

    I most certainly would not recommend this to anyone with CFS either. My experience suggests that it is very destructive.

    Dr. Cheney talks about Prozac etc. "frying" the brain, and this seemed to me that the Provigil had this effect many times greater than any of the antidepressants I tried (early in my illness).

    It was interesting to be reminded what "normal" felt like though, on that one day. Feeling good with brain intact was a very faint memory before that. I doubt I'd have ever embarked on this quest to get well if I hadn't had that experience.

    Best, Lisa
  13. getwellgirl

    getwellgirl New Member

    I must be quite lucky because for the most part my brain works very well and I think my memory has improved since being on the methylation supplements.

    However I do take a tiny amount of low dose Prednisolone which gives me extra cortisol and I am sure that also affects my brain in a beneficial way.

    I notice that when I overdo the physical stuff though it affects my brain immediately and I will feel very depressed and unwell and literally cannot think straight. However now that I am back on the 1.2mg Pred I seem to recover pretty quickly provided I rest for a while. It just didn't happen that way when I was off it for a couple of months.

    I think the role of cortisol is really important in this illness and I am positive it affects the neurotransmitters.

    Pam
  14. richvank

    richvank New Member

    Hi, Kelly.

    I think nebulized glutathione would support your immune system and would work together with antibiotics and antivirals. It may increase the rate of die-off of pathogens, so it might be wise to start with a small dosage to see how it goes. I don't know if Dr. Montoya has any restrictions in his Valcyte study on adding other treatments, but that would be something else to check before starting glutathione while doing the Valcyte.

    Rich
  15. cherylsue

    cherylsue Member

    For what it's worth...

    I tried Provigil briefly a few years ago when I was in my 2nd bout of CFS. It give me a very wired, but tired feeling. I soon stopped it because I needed rest, not that type of stimulation where you would still feel sick but couldn't go to sleep.

    In my research then, I picked up some notes from the IACFS conference in 2004. I believe it was suggested that Provigil was not recommended for CFS patients who developed CFS from a viral illness. The reason was not explained, but I never went back to the stuff, although some people on this board like it. Again, we all differ.

    CherylSue
  16. deliarose

    deliarose New Member

    just one woman's experience.. but I notice that if I skip my glutathione at night ( i nebulise a bunch.. just fill up the nebulising cup) I feel worse in the morning.

    Some malaise and a lot more sluggishness.

    I usually nebulise some glut at night .. and take soem form of glut in the a.m. .. Am slowing ramping up the amount of ImmunoPro Rx I take during the day.

    Delia
  17. deliarose

    deliarose New Member

    So Pam were your cognitive abilities in reasonably good shape before u started on the methyl program?

    how wld u rate the improvement in the last 6 months on the program?

    I've only been on this 6 weeks, seen significant improvement, but still a long way to go. Oddly, find old memories coming back that I hadn't thought of in a while.

    I do have a past!
    Delia
  18. deliarose

    deliarose New Member

    Sorry. don't have Amy's book yet, so have to keep pestering you for answers.

    Any idea if raising glutathione would help combat mycoplasma infections? Is there any connection?

    Thanks and thanks for those words of encouragement earlier on.

    (BTW, I would be interested to know wot, if anything, u are doing to get your /Amy's protocol to a wider audience .. say in the UK, Australia, S. AFrica etcc...

    I know u work with Dr Myhill in the UK. And is anyone in the GWS community working with this?)

    Delia
  19. deliarose

    deliarose New Member

    got an email, or affiliation?
    I would post any info I got.

    Also, sorry for all the questions.. grtful for any that get answered.. realise you're busy... so no pressure.

    Best and THANKS!!

    It's really encouraging about those autistic kids. Did I ever mention my nephew is autistic?

    Delia
  20. Forebearance

    Forebearance Member

    Hey, Delia, that's happening to me, too! I find myself thinking of memories that I haven't thought of in years. It feels good. Sort of like a brain waking up.

    Forebearance