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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Klimas et al Questions

Discussion in 'ME/CFS Doctors' started by PhoenixBurger, Dec 13, 2012.

  1. PhoenixBurger

    PhoenixBurger Senior Member

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    Does anyone know what Dr. Klimas' clinic's viewpoint on reactivation of latent herpes virus infections is?

    Do they teach / believe that such reactivations, if proven current with proper tests, can be responsible for CFS / Fibro syndromes that wax and wane for months? I have yet to encounter a single doctor who is willing to entertain this theory.

    Does she believe in herbal / natural immune supplementation regimens including things like Cats Claw or ProBoost (Thymus Extract), etc ... Transfer Factors?

    Thank you.
     
  2. lnester7

    lnester7 Seven

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    I see Dr Rey there, she explains to me that I have a NK cell dysfunction (my inmune system is the issue) Which allow viral reactivation (don't keep the virus at bay).
    She first tried to do it naturally and allow my body to fight, Only gave me Imunovir to raise NK and T cell, and equillibrant to low Coaxaquie. Also put me on Vit C, Coq10, Fish oil, D.

    I tested high for coasaxie, I have Super high Parvo, HH6V.

    After a few months retested for Viral load, if it still high I will start antivirals.

    There is a lady that has a blog in youtube and you can see Dr Klimas approach w her. KAISERMECFS is her user. http://www.youtube.com/user/kaiserMECFS
     
    heapsreal and Xandoff like this.
  3. PhoenixBurger

    PhoenixBurger Senior Member

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    Wow. That is so fascinating to me that Dr Rey does all of this. Because the very doctors who recommend Klimas / Rey absolutely laugh at those techniques. I mean really - I personally did my own research and landed on supplementing with things like C, D, CoQ, Carnitine, and others ... yet these doctors have no awareness whatsoever of such techniques.

    They simply have no concept of an immune system not suppressing CMV or HHV6. To them you are either healthy (perfect immune system) or you have HIV (immunocompromised). There is no in between. There is no discussion on the matter. My comments and theories based on this are ignored, and dismissed immediately.

    Yet these same doctors recommend me going to Dr. Rey and talk about Klimas amazing results with people. Apparently if the exact same information comes out of the mouth of someone like me, its ignored. Unreal.
     
    overtrain and Little Bluestem like this.
  4. CallieAndToby

    CallieAndToby Senior Member

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    I have the same lab results and treatment as Inester, except Dr. Rey hasn't discussed using anti-virals with me. I could not take immunovir.

    Dr. Klimas is not accepting new patients. Sorry I cannot answer your question, they are very busy and I'm too sick to do any research.

    I take the same supplements at high doses.
     
  5. Marg

    Marg Senior Member

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    Dr. Klimas did the same with me, Imunivor first, then Equilibrant. My killer cells went from working at 5% to high normal. I still had some reactivation of EVB and HHV6, I had started mayking antibidies. Acyclovior was added last May. She was fine will all my supplements but raise D and said to take Ubiquinal instead of CoQ10 and 200 mgs.

    I hope to see her in May but will have to call after the first of the year to see what is going on and where. I hope she will still see patinets if not I will go to Rey, she is very good as well..

    I know she does Skype visits but I am not so sure about that.
     
  6. PhoenixBurger

    PhoenixBurger Senior Member

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    Can someone clarify for me why CoQ10 is recommended for this? I know it helps create ATP and therefore energy, so is it just a fatigue treatment? Because I am taking it for different reasons. Based on an assumption I have that there is some mitochondrial dysfunction in my muscles.

    Is CoQ10 supposed to help build immune function and help the immune system get stronger?
     
  7. PhoenixBurger

    PhoenixBurger Senior Member

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    I finally got a call back from Klimas/Rey. They can't see me until end of May.

    For anyone who calls, you have to keep calling. They simply dont return calls. It took me 3 weeks of trying every other day. I'd left messages with their answering service but nobody called me back. Finally they have a policy for those who have been trying longer than 2 weeks. They escalate you to a supervisor and that supervisor calls the clinic and personally requests they call back. That's the only time I got a reply. Bummed that I have to wait until end of May...
     
    MishMash and lnester7 like this.
  8. CallieAndToby

    CallieAndToby Senior Member

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    I'm going to be honest. Reading this made me quite bummed. Every patient I've talked to is on the SAME EXACT treatment even though we have different labs. This is highly concerning b/c it took me 10 years to get diagnosed, I became bedridden at one point for a year so I am very very very sick. I can't take the immunovir at all, I can only take 1/8th of equilibrant every other night, and the supplements haven't help any. There hasn't been any discussion of trying anything else and I am RAPIDLY declining and getting worse every couple of weeks. The misery that I am living in indescribable, the CFS has attacked every part of my body and I have had about 4 seizures this year even though I take Klonopin. I feel like something else needs to be done, but nothing else is ever mentioned, plus I haven't met one patient of Dr. Rey's who is on antivirals, what gives? I'm not bashing, I'm just really concerned. I had active parvo and coxsackie as well, not just high titers. Are there more options being offered to anybody??????????? Also, when it comes to sleep and dysautonomia and terrible ocd I was just told to see individual specialists, I've been doing that for 10 years, literally, without any benefit. My friend saw her around the same time as me and is bedridden now and getting worse also. Can only take tiny amounts of immunovir and equil. It seems like extreme measures should be taken for people who are just so sick. The office staff is horrible. It took me 3 months to get a follow up appt (I got much sicker in that time). I have mentioned this and will continue to mention it. I am hoping after the move, they will be better about this. I have to clarify that I do like Dr. Rey, but I am just frightened for my life, naturally.
     
    MishMash likes this.
  9. MishMash

    MishMash *****

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    CallieAndToby
    You have crystallized the frustration I felt going to to see Klimas, Bell, other specialist docs. Almost exactly. I walked out feeling desperately sick and hopeless, after spending time and money to visit these people. Then it turns into fear and desperation (what's going to happen to me?) I really don't think Klimas really understands how bad it can get. I don't know what else she can do, however. Just smiles, kind words.
     
  10. Katherine

    Katherine

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    That's really unacceptable.
     
  11. madietodd

    madietodd Senior Member

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    Honestly? I think the top doctors each have specialty areas within CFS and ME treatments, and if you're lucky you get a doctor who matches what your body needs. I went to Dr. Rey because I wanted the immune testing, but so far I've only gone the one time.

    It looks like Kenny de Meirleir has the most comprehensive testing and treatment vision. But Brussels is very far to travel, and I don't know that his success rate is any higher than others in the top 10.
     
    heapsreal likes this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    With the treatments available to us now and the knowledge that we can get off PR, its just not rocket science treating cfs/me. As madie said, i think some good immune testing nk function is a big one i think and can help cement our diagnoses, then i think lymphocyte subset, immunoglobulin subclasses and then some common auto immune problems etc then get tested for all the common viral and bacterial infections in cfs/me and treat the buggers. The immune system is harder to treat and i suppose the only thing easily available is immunovir for nk function and gammaglobulin for immunoglobulin defiencies.

    I suppose im saying its not rocket science because we have had enough people on here see these gurus and now the information is more readily available, we just need a doctor to do the testing and write the prescriptions. Some of us have to take it alot slower then others with treatments and we still need meds/supps to treat symptoms like sleep, pain etc I dont think anyone has a monopoly on this illness, yet or a certain cure. Unfortunately its still very much trial and error with treatments. I also think when one is upto full steam with treatments its going to take 6 months to really notice improvements and 12 months to feel good, its not going to happen over night, that just seems to be the case with treatments that have helped others.

    cheers!!
     
    overtrain likes this.
  13. Katherine

    Katherine

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    What is the success rate in terms of cure?
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    No cures, some remissions.

    Sushi
     
  15. Old Salt

    Old Salt Rowing the boat

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    S/W Pa.
     
  16. Old Salt

    Old Salt Rowing the boat

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    I assume you've done all the diet and supplement rout, as well as food reaction testing by a respected Naturalpath.
    Has anyone actually looked at your liver, by altrasound or MRI?
     
  17. PhoenixBurger

    PhoenixBurger Senior Member

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    I liked "heapsreal"s post. He, and I, and probably many of you have gotten to the point where Doctors are useful for two things:

    Running tests and writing prescriptions.

    And sometimes you have to even trick them into doing both of those things. By presenting with the proper verbage, phrasing, and sometimes outright lies. Otherwise the typical doctor will refuse. Its sad, but working the medical system is sometimes the only way to get what you need.

    I hope you all know you can run a lot of your own tests now though. Check out privatemdlabs.com. Its not cheap, but you can go without any doctor needed and get your own stuff done. They email you the results. Its cash out of pocket. No insurance accepted. But its an option. Also Life Extension Foundation (lef.org) provides the same service, but their prices are about 30% higher on each test.

    But what heaps said sounds like a decent approach:

    1) Get the comprehensive immune testing and treat.
    2) Get the comprehensive viral / bacterial testing and treat.
     
    leela and heapsreal like this.
  18. PNR2008

    PNR2008 Senior Member

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    I need to get a MRI. I've had 4 already but not for 6yrs. The head ones showed all the usual UBO's (unidentifying bright spots and ischemic changes but what is worrrying me is the pain in my legs and arms which is getting worse. I had back surgery which probably with the mylagram caused arachnoiditis (inflammation of the spine) and the nerves are bundling up. This was on the last MRI. So what does my rhuemy do? Increases the gabapentin, which does nothing for the pain I have. I'm already on 2-3 vicodins a day. Something is wrong with my spine, I believe, but she says try this, MRI's are expensive. Well so is my quality of life.
     
  19. CallieAndToby

    CallieAndToby Senior Member

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    @MishMash Glad I'm not the only one feeling this way, but sorry you have to go through it as well. Surprised Bell couldn't help. I saw another well known CFS doctor and he basically told me he couldn't help me, it was highly disappointing. Hoping ampligen gets approved, it helped my friends who were in the trials more than anything else, though was very hellish the first year. I think the most frustrating point was when I told one of them I didn't want to live anymore and they told me I needed to "think positive".

    I've done all that guys. I can't take immunovir, or LDN, or inosine (violent reactions to unheard of low doses/dissolved in water and sipped 1/3). I am mostly bedridden and rarely can read at all so I can't do any research. I have a single mother who spent the last of our savings on seeing my current CFS doctor. All I'm asking is if Dr. Rey/Klimas have more to offer than just equil and immunovir? And what's the point of even getting the expensive testing (which I did) if we're all just going to be prescribed the same combo? Plus it doesn't help everyone, plenty of other patients are on the stuff and told me they've only seen slight improvement, it is quite clear to me that CFIDS is beyond rocket science. This approach doesn't cover other issues: dysautonomia, sleeping disorders, non restorative sleep, excessive daytime sleepiness, etc. etc. etc.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Callieandtoby, my comment on rocket science is that current treatments arent, hopefully in the future rocket science helps, maybe the Open Medicine Institutte who are looking at doing alot more research.

    Where u live is it hard to find a descent GP who can atleast help u with symptoms like sleep, pain etc the basic symptoms?
     

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