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Alpha Lipoic Acid

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by slayadragon, Mar 27, 2010.

  1. slayadragon

    slayadragon Senior Member

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    Hi All,

    Does anyone have experience with ALA? Has Rich van K written anything about this?

    This is one of those supplements that never had any discernible effect on me when i was still getting toxic mold exposure.

    I started taking it this week and am getting what I identify to be a huge amount of toxic "dump." Hangover type feelings, fascia pain/tightness (relieved with neural therapy injections), stiffness.

    This all is worst in the early mornings and goes away by midday, which also is consistent with my other detox experiences.

    It feels like I'm just going really fast with this (and have indeed been taking a large dose), so likely I'll just back off a bit. I'm doing really well in general, so no need to kill myself.

    Still, does anyone have any thoughts?

    Best, Lisa
     
  2. dannybex

    dannybex Senior Member

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    Hello -- there's one PhD -- Andrew Cutler -- who has very strict advice and warnings about ALA, as it is able to chelate heavy metals. Here's a thread from about six months ago. Also, you can google "Andrew Cutler" and "Lipoic Acid" and you'll turn up a lot of information. I found that it helped me, but only if I took it according to his directions. (And haven't taken it for months now...kind of forgot about it...!)

    Here's the link to the forum discussion:

    http://www.forums.aboutmecfs.org/showthread.php?328

    Hope this helps.

    Dan

    p.s. Some people have to start out at a small dose...12.5 milligrams.
     
  3. Jenny

    Jenny Senior Member

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    As dannybex says, Cutler says frequent small doses of ALA chelate metals, including mercury. So he recommends it to chelate after amalgam removal. He also argues that it is very dangerous to take it with amalgams in. It's not at all clear what evidence he has for that.

    In contrast, lots of docs treating ME recommend high doses of ALA. You'd think that you'd find lots of reports of people getting much worse on it if Cutler was right. People with other chronic illnesses take it too in high doses - many of them must have amalgam fillings, and you don't hear anything about them getting worse on it.

    Incidentally, can anyone think of a supplement or treatment that every doc agrees on is beneficial for ME? I can't think of any at all.

    Jenny
     
  4. klutzo

    klutzo Senior Member

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    This is only my experience, but I took 550 mgs. of ALA daily for several years and saw no negative change in my brain function, despite having 4 amalgams, one inlay, and 3 crowns. There is no way I can afford amalgam removal. I also took NAC for years to help my liver detox, having no idea it could send mercury into my brain.

    I can no longer afford the fancy multivitamin and mineral supp. that had all that ALA in it, so I am no longer taking any, and haven't for a year now.

    It may have nothing to do with the supplement or the lack of taking it, but my brain has noticeably deteriorated during this last year. I am taking B12 lozenges, curcumin, and a more absorbable form of COQ10 (ubiquinol) to try to help, though I can't afford the high dose of COQ10 recommended for this purpose.

    klutzo
     
  5. alice1

    alice1 Senior Member

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    Andrew Cutler..metal detox

    This guy is a chemist and I think it's worth taking a look at his protocal.
    It's inexspensive,very doable and the die-off can be nil to little.
    His protocal is about pulse dosing and the main ingredient is over the counter .Lipoic Acid.
     
  6. slayadragon

    slayadragon Senior Member

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    Interesting to hear that this is supposed to specifically detox mercury. That sounds plausible based on my history, since I believe that my major toxic sources have been mycotoxins, Lyme toxins and mercury. After having taken a whole lot of cholestyramine over the past two years, the detox reaction I'm getting from that has gone down, so maybe the Lyme and mold is coming under control. The things that are supposed to be chelating mercury (brown seaweed and the ALA) have been giving me a reaction, so maybe I have a ways to go with that.

    I'll have to say that I'm not convinced that PWC's should bother worrying so much about the moving mercury into the brain. For those of us who have had mold issues (which may well be all of us), our BBB's are going to be shot since satratoxin (even the mild stuff that's been studied in labs) is extremely good at causing perforations (holes) so all kinds of stuff can get in. Just assuming that anything bad that we put into our bodies (e.g. air freshener) will go right into the brain - and thus focusing on doing whatever we can to move stuff OUT of the body as a whole - thus seems like possibly a reasonable strategy for us.

    Nothing else in the PWC's body works as it's supposed to. Why should this be any different?

    I did get my amalgams out (safely) many years ago. And the 1200 mg per day of ALA that I took for several days in a row admittedly was a lot! I'm going to take a little break and then cut down on the dose. I got such a big reaction that it feels like it has to be a good thing, but certainly there is no reason to push it that hard.

    Thanks for the comments...


    Lisa
     
  7. Wayne

    Wayne Senior Member

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    Hi Lisa,

    Those were some interesting comments about the blood brain barrier (BBB). I've long felt that a compromised BBB was responsible for a significant amount of the symptoms PWCs experience. I had never suspected that mold might be a major contributor however (I've been more focused on Lyme). Thanks for the tip in that regard. Are you aware of anything else in particular that is known or suspected to be responsible for compromising the BBB? Thanks.

    BTW, I've heard that high levels of anti-oxidants is one of the best ways to restore and/or strengthen the BBB. Are you aware of any other things that would be helpful?. I suppose avoiding mold and then getting it out of our bodies would be a good start, eh? :Retro smile:

    Wayne

    ETA Are you aware of how Forbearance from PH is doing with her mold issues? Does she still post on PH? -- Thanks.
     
  8. slayadragon

    slayadragon Senior Member

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    Hi Wayne,

    Since coming across the work that shows that satratoxins (Stachybotrys poison) perforates the BBB, I've asked a number of people (including professional toxicologists) if there are other chemicals that have been shown to do this or are suspected of doing this.

    Certainly there are lots of chemicals (e.g. formaldehyde) that can get through the BBB themselves, and apparently others go right through the olfactory nerve into the brain (not hitting the BBB at all). I've not found any other chemicals that are known or suspected to create holes in the BBB to let other stuff in though.

    Recently I read that almost 20% of the population of California self-reports chemical sensitivities that are problematic to require specific measures to address. Considering the amount of the "really bad outdoor mold" (which seems to be a particularly damaging strain of Stachy that is really good at causing severe MCS in CFS patients who get a lot of exposure to it--as was the case with Erik before he started avoiding it), that makes sense to me.

    I've not heard any reports that Lyme can affect the BBB. I think that what may be happening is that the Lyme toxin can get into the brain through the perforations, thus causing cognitive and emotional symptoms. Apparently Lyme did not used to be a neurological illness until maybe 20 years ago, which would be consistent with the time frame that people started to be affected more by Stachy in general and by this "super Stachy" or "super mold" in particular.

    The idea that mercury gets into the brain more as a result of the perforations is consistent with the idea that it seems to be more damaging now than in the past, and that it seems more damaging to people with more mold issues. I've not gone out of my way to visit the homes of autistic children yet, but from what others have told me, mold is an under-the-radar factor in that illness too.

    My own MCS dissipated with extreme mold avoidance, as did Erik's and certain other people's. I'm not convinced that the BBB repaired itself or even that the BBB CAN repair itself. If Erik or I get a lot of mold exposure (and, in particular, exposure to the "super mold"), the MCS immediately comes back at full force (e.g. as bad as it ever was).

    So I think that the holes are still there and that some other mechanism is keeping the chemicals from being problematic most of the time.

    It may be that with less inflammation (the super mold is REALLY good at causing inflammation but other mold does it too), chemicals of all sorts (and especially Lyme chemical) hurt less.

    I also showed Rich van K some studies that suggest that satratoxins decrease the amount of reduced glutathione in the system. That would interfere with the detoxification of various chemicals as well as have other effects, he agreed. So maybe the avoidance is allowing the reduced glutathione levels to go back up, thereby allowing my system to "process" the chemicals fast enough that they don't get into the brain through whatever holes are still there.

    This illness is the very devil, isn't it?

    Forebearance still has a thread on ProHealth. She seems to be doing okay but is still finding it challenging to avoid mold and chemicals at a high enough level to feel really well.

    Best, Lisa
     
  9. jbond

    jbond Guest

    The most likely explanation: Post-hoc ergo propter hoc
     
  10. slayadragon

    slayadragon Senior Member

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    Would you care to elaborate?
     
  11. Wayne

    Wayne Senior Member

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    Leaky Brain Syndrome -- Ammonia Buildup

    Hi Lisa,

    I started a thread over at PH about a year ago entitled, "Leaky Brain Syndrome -- Ammonia Buildup". Here's a direct link to that thread. I'll paste my initial post below. The article I link to in this post has some pretty fascinating references to autism.

    I find it very interesting that some of the severe neurological illness now associated with Lyme is likely a result of the additional presence of Stachy. So much I have to learn about mold yet. I do sense that my 3x/week far infrared saunas are helping my Lyme, and likely any mold issues as well. -- Thanks for all your good information.

    Uh huh! :Retro smile:
    ...............................................

    (Originally posted on the PH Board on 3/3/09)

    Hi All,

    I just ran into an article that may be of interest to some on this board. In it Dr. David Jernigan mentions how a buildup of ammonia in the body can cause many of the symptoms we with CFIDS experience. This buildup can be caused by Lyme infections, but also by other means.

    I believe Dr. Jernigan is a chiropractor, and uses various types of alternative testing and treatment modalities in his practice. I know many here would have no interest in this type of approach, so you may not want to explore what he has to say. Wanted you to know right up front so you don't waste your time if this is not your orientation.

    I am just now getting started on trying to figure out how to start treating myself since testing positive for Lyme last fall. I'm hoping some method other than antibiotics will end up working for me.

    Best, Wayne
    ........................................................

    Lyme Leaky Brain Syndrome, by Dr. David Jernigan, D.C.

    Although many people have heard of Leaky Bowel Syndrome (LBS), few have heard of (Lyme) Leaky Brain Syndrome (LLBS). I coined this term when I became aware of the damaging effects on the blood-brain barrier (BBB) from the accumulation of Lyme-induced ammonia in the brain. Ammonia in the brain is a primary cause of neurological and psychological hypersensitivity. Ammonia alters the permeability of the BBB, enabling larger molecules, such as common amino acids, to cross.

    When these random molecules touch the brain tissues, they set up hypersensitivities, otherwise known as cerebral allergies. The symptoms of these cerebral allergies are unique and depend on what part of the brain is being affected. Ammonia-induced Leaky Brain Syndrome is one of the primary causes of multiple chemical sensitivities, cognitive dysfunction, chronic fatigue syndrome, and a myriad of other chronic conditions.

    There are only a few ways ammonia can become a problem in the brain. Severe liver disease is a well-recognized producer of global or systemic ammonia. No one knew, until I discovered quite unexpectedly, that Lyme spirochetes could cause ammonia to accumulate in localized areas of the brain.
    ....................................................

    The full article can be accessed here.
     
  12. jbond

    jbond Guest


    You asked if anyone had any thoughts re: I started taking it this week and am getting what I identify to be a huge amount of toxic "dump." Hangover type feelings, fascia pain/tightness (relieved with neural therapy injections), stiffness.

    Have you had those symptoms before taking it? (at any time). My suggestion would be to stop all supplements and see what happens.
     
  13. Wayne

    Wayne Senior Member

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    Neurological Shock ?

    Hi again Lisa,

    I puzzled for many years as to why I was so "chemically sensitive". I had an experience a couple years ago that I feel gave me some insight (for myself). I posted about this on the PH board, and thought I'd paste it below in case you were interested.

    Wayne
    ..........................................

    (Originally Posted on PH Board on 5/31/07)

    Hi revicg,

    Ive had extreme MCS/EI in the past but Ive improved somewhat over time. Ive wondered a lot as to how a person could be so sensitive to such small amounts of exposure. I had an experience about a year ago that gave me some insight (for myself).

    I was in the waiting room of the chiropractor/naturopath I go to who also does cranial sacral therapy. Before I knew it, his wife was spraying some spot remover on the carpet in the hallway. At the same time she was musing Hmmm, I just remembered that some people can be sensitive to things like this.

    Well, about the time I started to reel from it, the doctor came out and escorted me into his office. I told him I could still smell the chemicals and I was getting sicker by the moment and getting so dizzy I absolutely had to leave.

    He persuaded me to go with him into a back room that was still clear. I was very reluctant to do so because I did not want to waste a cranial/sacral session at a time when I was feeling extremely ill. Im glad I did however, because within seconds of him putting his hands on my head, my symptoms began to wane almost immediately. Most symptoms were gone within a minute. I could hardly believe it as an exposure such as that would normally take me at least hours to start recovering from and sometimes days to get back my equilibrium.

    What I learned is that the exposures I experience seem to primarily affect me neurologically. And Ive come to believe that so many of symptoms we with CFS/FM deal with are neurological symptoms. Dr. Jay Goldsteins drug therapy seems to have been specifically developed to alter/modulate neurological responses.

    More natural therapies such as the cranial/sacral I mentioned and some of the NAET experiences others have shared seem to also modulate neurological responses. It appears in most cases that these all seem to be palliative measures and have to be continued indefinately to sustain any improvement we may experience. My goal is to try to correct what is making us have such extreme neurological responses in the first place. To that end, I am slowly starting the methylation cycle block therapy.

    Regards, Wayne

    P.S. I did have the experience a couple of months ago where some cooking done in the house was bothering me on a particularly sensitive day for me.

    Hours and hours later when I no longer was smelling it at all in the house, I kept waking up in the night smelling it over and over again.

    Felt like another indication to me that this is primarily neurological, with "imprints" being able to linger around long after one removes themselves from the exposure.

    Massaging up and down my spine seems to relieve some of these episodes for me.
     
  14. Wayne

    Wayne Senior Member

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    Detoxification Pathways Out of the Brain

    Hi Lisa,

    This thread has reminded of various posts I've done in the past which feel relevant here. The one I'm pasting at the end has to do with "detoxification pathways out of the brain". I've not followed up on this comment made by my naturopathic doctor, but it may be something you would want to explore.

    BTW, I heard a testimonial just a couple days ago regarding alpha lipoic acid. Apparently, somebody combined ALA with another therapy, and quickly recovered from cancer. Not overly difficult to imagine.

    Good luck on your continuing experiment with ALA. I may consider starting a protocol similar to what you're doing, and combine it with my far infrared saunas. I think a continuing attention to detoxification is a real key for me to maintain what health I have, and hopefully improve things.

    I believe another poster here maintained that once he felt he had detoxified 90% of his toxic load, it finally got him over the "hump" (my word). I remember this concept, as it sort of rang true for me. Getting to the 90% I guess is what may be the trick.

    Yes, these "malfunctions" we deal with are devilish indeed! :Retro smile:

    Wayne
    ............................................

    Detoxification Pathways Out of the Brain


    woofmom - Myelin repair 07/26/07 12:48 AM

    Hi Woofmom,

    I had an interesting experience with my naturpathic doctor today. I was explaining a bit about the methylation cycle block (MCB) protocol, and how I was taking just the Perque B-12 daily and the Intrinsi B-12 Folate every 3-4 days.

    I explained that I started out with taking both of these every day, and soon noticed detox symtpoms of headaches and restless sleep. Another symptom I suspected as detox was a black spot that showed up under my thumbnail on my right thumb. It started out at the base of my nail and is now about two thirds of the way toward the end.

    I then showed him how I had the exact same kind of black spot in the exact same location under the left thumbnail. Only it started out about a week later.

    He looked at me with a fairly serious look on his face and said something like, "Those are detoxifcation pathways leading out of the brain". I suspected as much, but was a pretty sobering experience to have it mentioned by a doctor.

    If I truly am detoxing some bad stuff out of my brain, I suspect that I will be doing a lot of myelin repair as well.
     
  15. Sunday

    Sunday Senior Member

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    What a fascinating post. I'm sorry it was you that was so fascinating, though. I'm going to ponder this one a lot.

    About ALA - I don't know a ton about it, but it is part of the protocol in the Hidden Story thread. That's a long thread, but in the first three pages Freddd lays out a basic description of the supplements he recommends and why. With brainfog that's a tough 3 pages; I read it over and over before starting the protocol. There has been discussion of the BBB and mercury on that thread; so far the inconclusive upshot has been that some people do really well with it and some people have a really hard time with it. CFS business as usual.
     
  16. slayadragon

    slayadragon Senior Member

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    jbond wrote:

    >You asked if anyone had any thoughts re: I started taking it this week and am getting what I identify to be a huge amount of toxic "dump." Hangover type feelings, fascia pain/tightness (relieved with neural therapy injections), stiffness. Have you had those symptoms before taking it? (at any time). My suggestion would be to stop all supplements and see what happens.

    Yep, all those symptoms went away almost immediately after I stopped the ALA. The amount I was taking was really high. It was interesting to find a supplement that had that big of an effect on me.

    I'm pursuing this now at a lower dose.

    Thanks, Lisa
     
  17. slayadragon

    slayadragon Senior Member

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    Hi Wayne,

    Sorry to have delayed in returning to this board for a while.

    It’s been over a year since I’ve put any thought into Amy Yasko’s work, but what you’re saying rings a bell.

    If I recall correctly, she talks about people who have a certain genotype having initial problems on her protocol (specifically the folate-B12 combination). It’s my recollection that this leads to the release of lots of ammonia, which causes a “spacey” type feeling.

    Some people find this difficult to distinguish from detox, especially in the early stages of the protocol. Rich suggests that people do a urine test to see if they’re having problems.

    It seems to me that getting bacteria under control was a major way of dealing with the ammonia problem. So that’s feeding right into what you’re saying.

    Following is an abstract from the dissertation that covers the effects of satratoxin on the BBB.

    http://etd.lib.ttu.edu/theses/available/etd-05252005-163223/

    Sick-building syndrome (SBS) is a phenomenon in which individuals in buildings with poor indoor air quality (IAQ) experience health problems associated with the environment of the building. Fungal contamination in buildings due to species such as Stachybotrys chartarum and Penicillium chrysogenum has been correlated to poor IAQ. Symptoms experienced by individuals exposed to mycotoxins produced by Stachybotrys species include, headaches, fatigue, nausea, vomiting, bleeding from mucosal membranes, depression, sleep disturbances, anxiety, vertigo, memory-loss and seizures. Although these symptoms have been observed in individuals exposed to Stachybotrys sp. mycotoxins, the mechanisms by which these compounds may contribute to neurotoxicity are unknown. In this study, a series of experiments were conducted on human brain-capillary endothelial cells (HBCEC), astrocytes, and progenitor neuronal cells. The purpose of this study was to evaluate the effects induced by satratoxin H on neural tissues; this includes the HBCEC which forms the blood-brain barrier, followed by the astrocytes which act as immune cells, and the neurons. These cell lines were exposed to satratoxin H at concentrations ranging from 1ng/ml to 5000ng/ml. These data were compared to controls; cells exposed to known inflammatory compounds such as lipopolysaccharide (LPS), cells exposed to oxidative stress induced by hydrogen peroxide (H202), and to both LPS and H202 with satratoxin H. Immunofluorescent examination was used to evaluate apoptosis events, and the expression of cellular receptors including. Supernatants and cellular extracts were examined for inflammatory agents as well as compounds associated with apoptosis. The results of these studies demonstrated that at satratoxin H concentrations (1ng/ml- 10ng/ml), results were similar to control cells, while cells exposed to moderate concentrations of 100ng/ml-1000ng/ml of satratoxin H alone or with LPS or H202, demonstrated high expression of inflammatory and apoptotic events. These experiments demonstrate that the macrocyclic trichothecenes produced by Stachybotrys chartarum are able to induce apoptotic and inflammatory cascades in endothelial cells, astrocytes, and neurons. These studies suggest that exposure to low to moderate doses of satratoxin could activate cellular pathways that induce a series of events leading to neurological tissue damage, which may induce the symptoms observed in individuals exposed to Stachybotrys chartarum.

    This article is rather technical. However, it’s my understanding that LPS (lipopolysaccharide) is an inflammatory compound made by endotoxin. There seems to be some question about whether LPS is made by Lyme in particular, but regardless the toxins made by Lyme seem to fall into that category.

    The significance tests for the various compounds vary a little, but my takeaway was that combining the satratoxin with the LPS caused much bigger effects in a variety of ways than either alone. Adding “oxidative stress” (here by adding hydrogen peroxide) increased the effects further in some cases.

    That seems consistent with my own experiences. Not avoiding mold and having a Lyme flare (or worse, using doxy) was quite excruciating. The more that I’ve been able to avoid mold, the more I’ve been able to tolerate the doxy. Perhaps I will try it again at some point soon.

    Insofar as Lyme is still a problem, perhaps getting it under control would allow the mold reactivity to go down. Erik actually reported early on in his mold avoidance days that doxy seemed to have helped, but he didn’t feel it was curative. Whether his body has kept the Lyme under control since that time (he took 300 mg/day for a bit less than a year), I’m not sure.

    This article brings up atmospheric related worsening of symptoms during storms and the full moon. These symptoms seem clearly to be related to the increases in mold poison present at this time. Dropping barometric pressure causes colonies to release spores (in preparation for the falling rain), and to a lesser extent for the poisons that are present in the environment already to become “unstuck” from whatever they’re stuck to. (The latter phenomenon is especially evident when I drive my RV to a high altitude. The toxins let go, making it feel terrible, but when I bring it back down and wash it, it feels much better.) The full moon increases the problematic nature of the mycotoxins also.

    We know that the barometric pressure and full moon is affecting the mycotoxins because when we go to places where they’re not a problem for us (e.g. the “Godforsaken wilderness”) the effect does not occur. So here we have further suggestion that the combination of mold + Lyme is problematic.

    The author’s recommendations of high-dose Vitamin C is consistent with my own experiences that this is the one treatment that has helped my mold reactivity.

    Josh/545 (an apparent Moldie who actively treated Lyme and recovered basically fully from his CFS) expressed enthusiasm for Wobenzyme at one point. Perhaps I will pursue it.

    The idea that the herpes viruses produce arginine, and that arginine + ammonia are particularly problematic for brain tissues, adds to the witch’s brew. That also seems potentially consistent with the fact that I couldn’t take even a small dose of Famvir when I was getting mold exposure, but could take Valcyte with almost no problem whatsoever if my mold exposure was low enough. (The Valcyte did help me though, especially in terms of cognition, so it was clear that I still had a problem with the viruses. It was just that the reactivity went way up while I was first taking it.....meaning that I had to be super-careful about my mold exposure at the time.)

    So all in all, I’m really impressed with this author’s observations. As is always the case, he’s left mold out of the equation, but he managed to cover a lot of ground anyway. I will be able to use this article in the work that I’m doing, so thank you so much for providing it!

    I don’t know a lot about cranial sacral. But I wonder.....is this at all related to the pressure of the spinal fluid buildup that certain CFS patients have sought to relieve through spinal taps or surgery? Clearly that is related to the swelling of the spinal fluid resulting (at least in part) from mold exposures. Extreme mold avoidance has resolved that symptom for a number of us.

    It’s my understanding that this results in a certain kind of headache, tender, toward the base of the skull. Neural therapy in that area also has been helpful for me in relieving that.

    Detoxing stuff out of the brain is painful, I’ve found. It seems worth it though.

    Thanks much for that article reference!

    Best, Lisa
     
  18. Rrrr

    Rrrr Senior Member

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    hi slaya and wayne (and everyone!)

    i recently read cort's essay on the CFS brain/CNS protein study being done in Washington DC (currently cort's piece is found on the homepage of this website and here http://www.forums.aboutmecfs.org/content.php?92-Proteins-on-the-Brain-A-Breakthrough-for-ME-CFS)

    i wonder if the leaks in the brain that the Washington DC researchers talk about is somehow linked to these "perforates the BBB" issues you are discussing. here is a small quote:

    "The study suggested that chronic fatigue syndrome (ME/CFS) patients had unusual proteins in their cerebral spinal fluid. These results suggested that clumps of abnormally folded proteins could be causing small punctures in the blood vessels of ME/CFS patients brains. These punctures, in turn, could cause blood to leak out into the brain causing the symptoms of ME/CFS. This, the first attempt at finding a protein (as opposed to gene) signature, was stunningly successful in its ability to clearly elucidate a possible cause of chronic fatigue syndrome."

    Warmly,
    Rrrr
     
  19. August59

    August59 Daughters High School Graduation

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    I thought that article by Cort pertaining to the irregular shaped protiens and etc... to be very interesting. I have a gut feeling that there will be a lot more pertinent and useful information coming out of that study and I'll go out on a limb and say it will end up being more significant than "XMRV" in our pursuit of very significant treatment or even a cure.
     
  20. slayadragon

    slayadragon Senior Member

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    Rivka, that's a fantastic catch! I just posted the following on that thread of Cort's (along with a comment of my own). Thanks for bringing it to my attention.

    *

    This is a "summary hypothesis" from a CFS physician, Keith Berndtson, M.D., of Park Ridge, Illinois.

    *

    With the increased spinal fluid pressures, the temporary relief after spinal tap, the questions raised about whether Chiari malformations are causative or merely associated chronic recurrent severe headaches, the progression from an initial stage (depression, short fuse, cognitive dysfunction, etc.) to "migraine" headache make you wonder whether brain capillary endothelial membranes can become leaky from mold exposure.

    Daniel Amen, MD, has documented regional brain blood flow patterns in patients with various diagnoses (though not CFS). Certain symptoms correlate with reduced flow in certain brain regions. For example, if you experience decreased blood flow in your dominant-side temporal lobe, you may experience aggression (directed externally or internally), reading difficulties, word-finding problems, or increased sensitivity to slights, or emotional instability.

    We know that mold toxins create a leaky blood brain barrier. We also know that the choroid plexus of the brain filters brain blood and lymph into CSF. It also makes beta-2-microglobulin, a protein whose grab free toxins in this filtrate and escort them out of the CSF compartment.

    Let's say a biotoxin exposure creates a sequence of cytokine release, MMP-9 release, and a patch of leaky blood brain barrier. The cytokine response moves into the brain. Depending on which part of an individual's brain is affected, and depending on the relative state of neurochemical balance or imbalance in various parts of that person's brain, you might experience a sudden quickness to anger, reversible paralysis, brain fog, depression, or something else.

    Meanwhile, the choroid plexus is receiving more toxic shipments, so it is to crank up the volume of CSF production. The intracranial and/or spinal CSF pressure builds, creating deep pain at the base of the neck, top of the head, above the eyes, spine swelling, etc. You have what almost everyone would agree is a migraine headache, but it's really driven by the increased CSF pressure that occurs when the choroid plexus is trying to mop up after another toxic spill type of exposure to brain tissue. We do a spinal tap and the pressure is abnormally high, but tapping 30 cc of fluid out of the CSF space relieves the pressure on your brain and spinal cord and you feel better - until the pressure builds up again.

    You learn that mold is a trigger, so you avoid it as best you can. The avoidance slides you toward the part of the CFS spectrum where cytokine activity is quiet enough for you to tolerate exercise well. You exercise regularly at high altitudes and the EPO effect does wonders for your system.

    There may be "priming" triggers - or antecedent changes exposures to (reactivated HHV-6a, leaky gut-derived toxicities, parvovirus, Lyme, toxic fat stores, heavy metals, solvents, pesticides, etc.), and there may be "cascade triggers" (biotoxins, chemical exposures, food sensitivities, etc.).

    We should get the idea that there would be dozens of biomarker abnormalities floating through the bloodstream and CSF of CFS patients. The question is, is there a set pattern of abnormal biomarkers that a) place people on the CFS spectrum of illness, and b) sort them into specific types somewhere on the spectrum.

    We shall see. But if CFS patients remain something like a black box (or a dark gray box), as long as we can devise inputs (care plans) that produce reliably good outputs (clinical outcomes), then the pathways and mediators can unfold at the pace of academic research.

    -Keith Berndtson, M.D.
     

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