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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Can methylation deficit effect on myelin tie together ME/CFS, autism,FM, MS, and EMH?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by richvank, Jun 7, 2011.

  1. Adster

    Adster Senior Member

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    No it was a different doc, but is a common approach as I understand. I suspect I won't get far without addressing heavy metals as I am doing now. It seems like it will take many years though.
     
  2. fla

    fla Senior Member

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    Could parkinson's also be related? Just wondering.
     
  3. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    As one whose brain function is deteriorating steadily, this discussion is way beyond my comprehension. But...having CFS/ME, multiple chemical sensitivity, and electro-magnetic sensitivity, I am fascinated by the bits and pieces I can comprehend and am so very grateful to those of you who are pursuing these links. Thank you for your hard work in trying to put all the puzzle pieces together!
     
  4. richvank

    richvank Senior Member

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    Hi, fla.

    Yes, Parkinson's does seem to be related. Dr. David Perlmutter has reported success with boosting glutathione in this disorder, and Dr. AmyYasko has reported some success using methylation treatment for Parkinson's. My impression is that the methylation problem may be more localized to certain parts of the brain (such as the basal ganglia) in Parkinson's.

    Rich
     
  5. Wally

    Wally Senior Member

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    Rich,

    After the May 26th S.F. Chronicle article about ME/CFS, I have been contacted by several individuals. One of those individuals was Martin Graham (former Dept. Head at UC Berkeley Dept. of Electrical Engineering). He has provided me with his contact information should anyone be interested in talking to him regarding his theories on electric pollution and how he believes it may have an effect on ME/CFS and other neuro immune illnesses. Please let me know if you might be interested in talking to him.

    Wally
     
  6. richvank

    richvank Senior Member

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    Hi, Wally.

    Yes, I would be interested in communicating with Prof. Graham. I'm aware of his development of the power line filter for lowering the em radiation from home wiring.

    Best regards,

    Rich
     
  7. Wally

    Wally Senior Member

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    May I send you a private message thru your AOL address?
     
  8. leela

    leela Slow But Hopeful

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    If the professor wanted to post or allow someone to post some of his findings here, I would be most interested to know them.
     
  9. Wally

    Wally Senior Member

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    Leela,

    I believe that Rich is going to make contact with Dr. Graham, so perhaps Rich will be able to provide his thoughts on his theory after having an opportunity to talk to him. One of the sites that Dr. Graham gave me to look at was electricalpollution.com and he also said to look at the site for Magda Hava.com. I have not had an opportunity to look at this information myself other than to quickly scan it, so I have no opinion on this one way or another. If anyone else is interested in contacting Dr. Graham, please PM me and I will provide you with his contact information.
     
  10. Sallysblooms

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

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    I am so glad that my Liposomal Glutathione is so good for so many things, like Parkinson's as you said above. What a great supplement that has been as well at the ATP and other things I take.

    Thank you so much Rich for all of your help!
     
  11. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Hi Rich,

    This is really good work. I especially like the connection to EMF's.

    Conceivably you may be right about there being a myelin connection to fibro, but I think that particular disorder/disease is more a result of the fascia being messed up.

    My hypothesis is that this is related to the substitution of gliotoxin (made by candida and aspergillus) for glutathione in the extracellular matrix. This seems to cause a "hardening" that makes it difficult for materials (such as toxins) to flow through the lymph and be removed.

    (Thanks to Kerry Lane, M.D., for the nugget re gliotoxin.)

    With low glutathione, mold exposure and raging candida infections in ME/CFS, this seems like an accident waiting to happen.

    Thoughts?

    Thanks, Lisa
     
  12. Dufresne

    Dufresne almost there...

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    Hi Rich,

    It's my experience that electrical hypersensitivity is related to oxidative stress, and it can be turned off and on. I don't think the most common EHS symptoms of burning skin and eyes upon exposure to EMF are compatible with your theory. Also, I've some peripheral demyelination and I have absolutely no fibromyalgia. Of course I don't expect everyone's theories to conform to my illness, I'm just supplying a little feedback.
     
  13. taniaaust1

    taniaaust1 Senior Member

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    I have some EMF issues at times (fluro lighting tends to give me more headaches) ..

    my daughter (the one who doesnt have Asperger's nor has she ME) she has had a couple of incidents with her skin actually red and blistering (the exposed skin to computer), looking like severe sunburn after using computers. For some reason, its only happened to her a couple of times when using them (I kept her away from computers for a long while, shes okay now thou that she's older) ..

    . It appears as if the body sensitivity to EMFs varies at times and the fact my daughter has had that issue.. makes me think there must be some kind of genetic thing going on with EMF sensitivity thou we manifest it in different ways.
    .........

    Rich is there any proper scientific studies going on anywhere currently on the subject of the methylation stuff and ME??
     
  14. jeffrez

    jeffrez Senior Member

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    It's interesting - interesting to me at least - that a significantly higher number of males than females have autism, while with ME/CFS the numbers are almost completely reversed. Any speculation about that? A genetic component is at play, obviously, but it seems interesting that if a methylation defect is at the core of both that it would manifest differently in different genders.

    Or maybe the issue is even more upstream than that, with slightly different biochemical profiles in each case, i.e., two distinct genetic variances causing (or leading to) the two distinct disorders rather than a single genetic defect (or core set of defects) manifesting in different disorders perhaps as the result of other differences further down the line.

    thanks for all the info, regards.
     
  15. topaz

    topaz Senior Member

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    It takes a long time to get the gut flora balance restored. Diet is critical as is avoidance of antibiotics. Gut flora is critical for B vitamin synthesis and for removing toxins, including heavy metals. I cannot comment on KDM approach as I have barely delved into this, and intend to do so very soon as it is very credible work. There is a lot of debate about either getting the gut sorted first or attacking from both ends (methylation and addressing gut issues). I think both need to be addressed but the methylation protocol gets the methylation cycle working while the gut is being restored, having said this the gut cannot be ignored and I believe is crucial to long term recovery and maintenance.

    Ofcourse some people may have either GI systems incapable of adequate vitamin conversion or permanently damaged guts (GI surgery, celiacs, genetic etc). There is a lot of work going on in this area and like the human genome project there is one now studying the bacteria colonies in the human body. Bacteria out number body cells 10:1.

    this is why on the methylation protocol the bio-avail forms of B12/folate are used as many peoples bodies cannot convert for various reasons (genetic, GI damage or gut flora imbalance). The gut is often called the "second brain" and there is a lot of work being done on the "Gut-brain Axis". Either Scientific American or Science recently published an article on this so its certainly becoming more "main stream".

    This is a great video: http://vimeo.com/10507542
     
  16. Freddd

    Freddd Senior Member

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    Hi Rich,

    I have seen a few people try the active b12 protocol with MS. The effect has been as dramatic as with FMS/CFS, including up out of a wheelchair as quickly as if they had Subacute Combined Degeneration (bilateral demyelination in brain and cord). The effect of adb12 and l-carnitine fumarate is quite dramatic as is the mb12 and methylfolate. There is nothing in their response that indicates that is is different in any way EXCEPT that MS has single sided demyelination effects whereas adb12/mb12/mfolate demyelination effects are generally bilateral. To come to a diagnosis of MS b12 deficiency has to be "eliminated" and that is done with tests that have zero validity for eliminating b12 as effective such as serum level, uMMA and Hcy. So basically they are drawing your distinction that for it to be MS requires "functional" deficiency as opposed to "test" deficiency. Of course this is a distictiion made before it was discovered that MS patients have low CSF cobalamin levels with elevated CSF Hcy. Still, I hear the same meaningless distinctions made on the basis of serum level being >170. Sheer nonsense. I have seen major MS remission in 24 hours from the active b12 protocol. As I have lost touch with the people I have no idea if they continued. However, if I stopped the high dose mb12 I would be in a wheel chair within months to a year. So you might say I am in indefinite remision as long as I keep doing what I am doing without glutathione and/or folic/folinic acid.
     
  17. Freddd

    Freddd Senior Member

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    Hi taniaaust1,

    I quit using an electric blanket when I found I could feel the EMF. It feels just like chakra energies.

    When I was at my sickest I had a problem with the flicker/fusion rate. Movement on a regular TV looked like digital special effects with each tiny movement being seen as separate stop-action picture. I could also see the very obvious flicker of the fluorescent lights which was very annoying. I have always been able to feel high voltage power lines and "hear" them "singing". I used to have photo-allergic sneezing but that is 100% gone with mb12.
     
  18. Freddd

    Freddd Senior Member

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    Hi Rich,

    And relatively recent research indicates that Parkinson's patients have low CSF cobalamin levels and increased CSF MMA, the hypothesis being that the neurons are damaged over 20+ years by malfunctioning mitochondria. Low cobalamin plus elevated MMA with malfunctioning mitochondria sounds like low adb12 in the neuronal mitochondria to me.
     
  19. voner

    voner Senior Member

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    glial cells info??

    Rich Vank, Fredd

    I have great respect for the time and effort you put in on investigating the subject of methylation & me/cfs. My one wish is that -- somehow all of both the your musings could be boiled down into a simple paragraph or in some form that I (and many others) could easily understand. But maybe that is for the future and this is still the hashing out stage.

    since I'm one of those and me/CFS/FMS people with some nasty neurological symptoms allodynia, hyperalgesia, etc (a hypersensitive pain system -- including touching (ie, typing) anything causes lots of pain), I don't post a lot to this forum, but I was prompted to post, because I am bothered by one aspect of this discussion.

    Both the you keep referring to myelin, as if it was a simple substance. It isn't. In fact, it's an area that is receiving an immense amount of academic research. In fact, last week I saw publication in which the researchers demonstrated that a type of glial cell in the brain, astrocytes, was intimately involved in the formation of long-term memory (in rats)..

    For anyone wondering, here's the Wikipedia entries -- that's just the start:

    http://en.wikipedia.org/wiki/Glial_cell

    http://en.wikipedia.org/wiki/Myelin

    anyway, I think that if you're going to delve deep into the complexities of the methylation cycle and the involvement of vit b12, then you need to delve deep into the complex cities of glial cells also. And then hook your together relationships of vitamin B12 and glial cells

    by the way -- FYI, I have signed up for a trial subscription from a website called F1000 and I have found it quite useful for popping up "important" research papers. It's a website for academics and one of the things it does is other academics do reviews of published papers and then there's a ranking system for each paper that arises from their reviews

    of course -- not many of us could afford a real subscription, but if you're close to an academic institute or associated with an academic institute -- you may have access to this site for me -- I will do some research for the three-week trial period.

    And also -- FYI, I have recently found this site -- http://gutmicrobiology.com...

    I've set it up in my reader and it is just spewing out an amazing amount of papers that are published on got microbiology. It certainly is an area of intense research now also. And an area of which we know little -- but evidently the Europeans are far ahead of the United States researchers in this area.

    Respectfully,


    Voner
     
  20. richvank

    richvank Senior Member

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    Hi, Voner.

    Thanks for the advice. I'm sorry about the chronic pain you experience, and appreciate your willingness to increase your suffering by typing this post.

    I hope that we will eventualy be able to put it all together and boil it down to something simple, also. Unfortunately I think we are still in the "groping in the dark" stage, and it's messy.

    Yes, there's a lot of interesting and relevant research coming out. Having the time, energy and brain power to put it all together is the challenge.

    Thanks again.

    Rich
     

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