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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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After my appointment with Rey

Discussion in 'General Treatment' started by PhoenixBurger, Jun 7, 2013.

  1. PhoenixBurger

    PhoenixBurger Senior Member

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    I don't believe I have traditional CFS. I have struggled with fatigue but it was after some pretty severe changes in my life. I had a Hep B Immunoglobulin shot followed by 3 Hep B vaccination shots, and then was exposed to HIV and put on four powerful antiviral medications to prevent infection.

    Since then I have been a mess. All of the above have reputation for causing malfunction (usually inflammatory syndromes) of the immune ssytem. After months of strange random pains, aches, fatigue, and muscle pain, my symptoms have settled on muscle twitching throughout my body, some neuropathy and symptoms of nerve damge. As long as I keep my diet to non-inflammatory foods, avoid all inflammatory stimulants like caffeine, chocolate, nuts, etc ... and exercise regularly, I am doing okay. Something is still wrong, but its not destroying my life anymore.

    Awhile back I tested myself for CMV and it came back positive (IGM - current) so I assumed I just had a current CMV infection. I ordered a bunch of immune supplements like Astralagus, and Shiitake, and ProBoost, and Thymus stimulants, etc. Worst thing I could have done. Within 20 minutes of taking them my twitching went crazy all over my body, my symptoms enflamed like crazy.

    This made me believe that what I have is an autoimmune / inflammatory immune problem. I tested my CD8 and it came back elevated. More confirmation. I spoke to others who had health problems after the HIV prophylaxis and they'd developed inflammatory immune conditions like GBS and CIDP and Sarcoidosis. How do they feel better? Prednisone, etc. More confirmation. How do I feel better? Avoiding all immune boosters. My symptoms match Neuromyotonia which is also inflammatory immune in nature... More confirmation.

    Yet despite this ........

    Coxsackie came back positive and here is where I am completely lost. Her suggestion is to go on Equilibrant. Which is .... you guessed it .... an immune boosting supplement. Guess what it contains? exactly what I listed above that I already tried - Astralagus, Shiitake, etc etc. I asked her about that and she said yes, but shell just put me on half a tablet a day.

    If Coxsackie is positive - (she didnt tell me if its IGG or IGM or if those are even options?) ... does that imply I definitely have a problem? Or is Coxsackie something I could have gotten as a child and its just "still there" ?

    I dont want to run around chasing things that arent really my current problem. And everyone I know who took the HIV meds / Hep B vaccine are dealing with autoimmune related problems ... not sluggish immune systems!

    Anyways ... right on the Equilibrant site it says plain as day:

    "Warning: This type of immune modulators should not be used in patients with autoimmune tendency or known seizure disorders."

    :-/
     
    Adlyfrost likes this.
  2. lnester7

    lnester7 Seven

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    Equillibrant is the thing for Coasaxie it also took care of my Parvo too. Now w Dr Rey you have to be patient, On thing or just a few at a time, Did you get your tests back? or are you waiting on those (NK, T cels..).

    FYI I have high in inflammation cytokines also, equillibrant DID give me knee pain and it was roguh at first, I had to go S.L.O.W. but it did the job w/o me being worse afterwords.
     
  3. PhoenixBurger

    PhoenixBurger Senior Member

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    Can someone tell me about Coxsackie? If you test positive does that mean its a current infection for sure? Or is it possible you could show positive and not be currently suffering active infection?

    Is there iGG and iGM with Coxsackie?

    Is it like Mono or CMV where "many people will probably test positive" because they had it in their past, but it doesn't necessarily mean its an active infection causing problems today?

    These are all important things for me to know, but none of it was explained to me on the phone, and I can't find any information online. Naturally nobody offered to fax me a copy of my test results.

    I haven't had *any* of the symptoms of Coxsackie so I am extremely hesitant to just start shoving crap in my mouth that everyone here says is a nightmare of side effects (i saw a thread). Its the last thing I need right now. Whatever I do have is very sensitive to anything I take. I am not going to start taking something unless i know for sure its causing my symptoms.
     
  4. SOC

    SOC Senior Member

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    If you test positive on the test Dr R orders, you have an active infection (as I understand it).

    I had mild Coxsackie and Parvo infections which Equilibrant cleared up within 3 months at only 1 pill per day with no side effects. How much did Dr R prescribe for you, if you don't mind saying?

    The big thing with Equilibrant is supposed to be the shrubby sephora root (oxymatrine) the rest of it is more for immune support. Equilibrant is the only product with known and consistent amount of oxymatrine, which is why our docs recommend it over other available oxymatrine supplements. Dr Chia developed it because he couldn't find a reliable supplement when his son was ill.

    It'd definitely worth a try for a few months, especially if your dosage is not really high.

    Ask Dr Rey for copies of your labs. They'll send them.
     
  5. niall

    niall

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    Glad that you achieved some improvement. Could you please let us know how long you have been taking Equilibrant and your dosing protocol? Thanks.
     
    lnester7 likes this.
  6. PhoenixBurger

    PhoenixBurger Senior Member

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    Thank you for the reply SOC ... I am still trying to juggle whether I have autoimmune preambles or current infection. I do have current CMV infection (IGM). If your'e correct about Cox then I guess I have current infection with that. I don't understand why the Cox A had an IGG IGM on the blood order, but the Cox B was just "Cox B". No way to determine if its current or past? Really isn't much information out there on this.

    I asked for copies of my labs and the answering service said I have to jump through insane hoops. They fax me a two page form with like 20 questions, i have to fill out, scan in, save file, fax back, and then they snail mail me the results ... incredible. The whole process will take a couple weeks.

    My Bottom line: Do I boost my immune system and risk agitating a simmering autoimmune disorder or do I do nothing and risk further damage by these invaders.
     
  7. SOC

    SOC Senior Member

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    I used to get my lab results mailed to me routinely. In the last 6 months, however, I've had a terrible time getting them. I suppose it's a NOVA administrative issue that just isn't worked out yet. It is, indeed, extremely frustrating. I know it takes time for things to settle down after a big transition like that, but I hope it happens soon. I'm getting tired of administrative snafus, although I'm trying hard to be patient.
    Tough call. The problem with the immune system is that it is extremely complex. It's not so simple as "this revs it up, that shuts it down", so it's nearly impossible for non-experts to sort out what to do. :ill: Since the Neuroimmune Institute folks are immune system experts, I tend to trust their advice. So far it has worked for me.

    Equilibrant only made me better without noticeable side effects, but as I said earlier, I took a very low dose. Higher doses may be different, of course.

    My personal choice is to get rid of active infections on the theory that they can't be helping the situation both with the damage they are doing and their effect of stimulating the immune system. That, of course, is a personal decision we all have to make for ourselves. :)
     
  8. PhoenixBurger

    PhoenixBurger Senior Member

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    Sorry, to answer your previous question: she suggested a half tablet for me. I think her logic is that she's "only giving me a little" because of the risk that I have some autoimmune problem developing. But even a little immune boosting is the opposite of what I need if I have autoimmunity, right? :( I have no idea.

    However, it seems logical to me that if I am not exhibiting any Coxsackie symptoms, then we should focus on the symptoms I am exhibiting, and treat appropriately. If we do that, then I am dealing with autoimmunity. Unless Coxsackie is responsible for food intolerances, inflammation throughout the body, and apparent minor nerve damage. I suppose it could be, since Coxsackie's hallmark is inflammation ...

    In response to your last post above - really great advice, thank you. Its a tough call. I bought some stuff called ProBoost (you can google it) which is a proven immune boosting supplement, as well as Astralagus, Shiitake (both are in Equilibrant), and it was a nightmare. Within 30 minutes ... all hell broke loose. I seem to have calm symptoms only when I focus on calming my CNS and my immune system. I don't know if that is proof that I have overactive immune system - or if I have overactive immune system because of infection!

    SOC I can tell you that my CD8 count is 150 above the high limit of 800... and my Lymphs % is high as well. The Lymph % number has tripled from what my normal Lymphs % was before this whole thing started. I looked back at CBC tests done over the last several years and the number was 1/3 what it is now.

    But Im told that these two items being high, can be seen in autoimmunity as well as infection. So there you have it. The million dollar question. Which is it?
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    PhoenixBurger

    Not necessarily. It depends on the type of autoimmunity and the part of the immune system being "boosted." I also don't know much about this except that my ME specialist is giving me GcMAF (macrophage activating factor), closely monitoring my immune system and it seems to be a good thing even though he thinks that I have a type of autoimmunity--but not one of the types that show up on standard testing.

    Sushi
     
    SOC likes this.
  10. PhoenixBurger

    PhoenixBurger Senior Member

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    Yeah, like SOC said I guess its not "all or nothing" with the immune system. Sure seemed like it when I took generalized immune boosters like Lysine, Astralagus, Cats Claw, etc. All of those caused me major problems.
     
  11. lnester7

    lnester7 Seven

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    I changed it. But started half a pill for 3 days, then one pill and work my way up to 2 pills a day. It took me a while to go up because I reacted with knee pain, it was so bad when I went up so I had to be careful with it.

    At some point I went up to 6 pills a day but they say unless you are Latin (not sure why) you do not need more than 2 (or 4 max?) a day. PcwCalvin or something like that has a blog and he explains why (Dr explains to him the dosing reasoning better.)

    It took about 4-6 months (I got tested at that point, might of been sooner) to clear Cosaxie and Parvo for me, Now I have been on it for 1 year and 2 months for maintenance.
     
  12. Adlyfrost

    Adlyfrost Senior Member

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    @PhoenixBurger : I wish I had seen this post last year. Had similar reaction with immune-modulators- like I had been injected with lethal dose of caffeine- twitching, heart racing, it was awful. At first some immune-modulators seemed less harmful than others, but eventually I had to phase most of them out.

    Last year I was taking Equilibrant after a horrible and stubborn viral infection. A first I worked my way up to 3 tabs /day in a month but all of a sudden one night had these violent attacks similar to what you described. I had to stop for a while. Then I had another viral infection 2 months later. I tried taking 1/16th tab and worked my way up to half a tab. Just that small amount was working wonders. Amazing stuff!!!!... then the attacks again. Then I went back to 1/16th tab Equilibrant- still I had insomnia and attacks.

    Then I decided to take just shittake and astragalus. Attacks subsided but felt hyper and exhausted all the time and terrible insomnia. So I finally started a homemade chicken broth diet- with raw garlic it gives me the same relaxed effect as Equilibrant. But it takes a long time and my diet is severely restricted.

    Still get autoimmune attacks occasionally from certain foods now. Don't regret using Equilibrant- just can't tolerate it for very long. I avoid it though unless I am absolutely desperate from chronic viral infection.

    As far as your virus, I suggest reading about Dr. Chia's theories on the autoimmune triggering properties of enteroviruses. He thinks the virus is causing it. Really fascinating. Can't find link right now, sorry....

    In my experience there is a small danger in triggering an autoimmune response like you described (other than going into a seizure and other obvious stuff!) Autoimmune responses can cause scarring / inflammation which can further impede correct immune response to virus. But nobody talks about that.

    To counteract that inflammation I find homemade chicken broth is the best thing in the world. It is really helping me to heal but it takes time and self-denial. Hope you are feeling better- that was an old post.
     

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