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Cfs not viral based treatment

Discussion in 'General Treatment' started by Pink, Feb 8, 2018.

  1. Pink

    Pink Senior Member

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    I had bloodwork done for Epstein barr, parvovirus, mono, lymes & the other tick borne diseases, as well as an endoscopy, and stool tests to check for infection.
    All of these were negative for current infection.
    I did take valacyclover twice , in case of hidden virus but it made no difference. I also tried anti fungal (to treat high levels of Candida along w the diet) and antibiotics.
    I'm looking into the various US treatment centers & it seems they mainly give various anti virals. Is there a center that isn't viral based that I should look into?

    Eta, my thyroid and hormone levels also are good, so I'm not even sure what type of treatment to look into.
     
    Shoshana and mattie like this.
  2. Wishful

    Wishful Senior Member

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    You should look in the Testing and Treatment sub-forums. I don't check there often, but the people who are enthusiastic about potential treatments should be active there.
     
  3. Pink

    Pink Senior Member

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    Thanks wishful, I did. But brain fog makes it so hard for me to understand these threads. And at this point, after seeing so many different Drs , I just want to go to 1 place for possible treatment.
    I just don't want to go somewhere that focuses mainly on anti virals (unless I have some more obscure virus)
     
  4. Wishful

    Wishful Senior Member

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    I'll let others offer suggestions then. I'm unaware of any clinic that offers an actual treatment for ME. Some may offer an experimental treatment based on an unproven theory, with some patients who claim to have improved (and others who say it was a waste of money). I haven't come across any I feel any confidence in.
     
    Pink likes this.
  5. Hip

    Hip Senior Member

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    Were you tested for coxsackievirus B, echovirus, HHV-6 and cytomegalovirus? These are important infections to check for in ME/CFS.



    How long did you take this antiviral for? Valtrex (valacyclovir) tends to take 3 or 4 months before any benefits even begin to appear, and then takes around 2 years treatment for the full benefits to manifest. Dr Lerner's protocol is 1000 mg taken 4 times daily, though Prof Montoya uses lower doses.



    The methylation protocol and low-dose naltrexone are general treatments for ME/CFS that do not relate to any specific virus or infection. Some patients also benefit from dietary approaches such as the ketogenic diet.
     
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  6. Pink

    Pink Senior Member

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    Yeah, my husband feels the same as you, but when I'm so sick I feel desperate enough to try almost anything
     
  7. Pink

    Pink Senior Member

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    Hip, I thought I was tested for Coxackie virus, but I don't see it in my bloodwork.
    I do not think I was tested for the other viruses.
    The valacyclover was a 10 day supply I believe, it made my stomach really sick though. I took it on 2 separate occasions and it made me really sick both times.

    Ldn increased my anxiety to panic levels & I felt very aggressive so I stopped it after a few days.
    I have gotten much sicker on the different diets I tried (candida, elimination, gluten free)
    What is the methylation protocol?
    Is Dr klimas more virus based in her approach?
     
  8. BadBadBear

    BadBadBear Senior Member

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    Thats way too short of a trial of valacyclovir. It only stops viruses from replicating, it does not kill them so you need a much longer trial to determine whether they help you. Also it helps to start on a low dose and work up slowly to avoid the side effects.
     
    Pink likes this.
  9. Pink

    Pink Senior Member

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    The question is, bad bear, if it even makes sense to try anti virals again if my bloodwork is negative for current infections.
    My body is very sensitive to any medications, that I hesitate to take something unnecessarily.
    Eta : what do u mean it doesn't kill the virus? Is there anything that does?
     
  10. BadBadBear

    BadBadBear Senior Member

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    Your immune system does the virus killing... Antivirals prevent replication. Latent viruses are in hiding until they reactivate. So it takes antiviral therapy a very long time to do its job of reducing viral load.
     
  11. BadBadBear

    BadBadBear Senior Member

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    What thyroid tests did they do? Do you have specifics?

    Did they test you for autoimmune diseases such as RA, lupus, Sjogrens?
     
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  12. Pink

    Pink Senior Member

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    Oh I think I understand. But my bloodwork shows no active viruses
     
  13. Pink

    Pink Senior Member

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    Yes I was tested for all of those as well by a rheumatologist.
    The thyroid was for t3, t4, tsh, thyroid antibodies andx some others. Plus MRI of brain andx pituitary gland.
     
  14. BadBadBear

    BadBadBear Senior Member

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    You might want to post results. Many of us have been told by conventional docs that our labs are normal, only to find out they are abnormal or at least far from optimal. I would not trust a conventional doc to interpret viral or thyroid labs in particular.
     
  15. Hip

    Hip Senior Member

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    Coxsackievirus B and echovirus are classed as enteroviruses, so maybe you were tested for enterovirus? Dr John Chia tests for enterovirus using a stomach tissue biopsy obtained by endoscopy down the throat.

    The treatment Dr Chia uses for enterovirus is oxymatrine, which can be cheaply bought as a supplement online.
     
  16. Pink

    Pink Senior Member

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    I had an endoscopy w biopsy done, it showed eosinophils (which have been elevated in my bloodwork too for a while now) but no infections.
     
  17. Hip

    Hip Senior Member

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    So it looks like you may not have been tested for enteroviruses, nor HHV-6 or cytomegalovirus. So if that is the case, I don't think you can say you are negative for current infection, because all those viruses are linked to ME/CFS.


    If you have trouble with Valtrex, then Famvir is a better tolerated alternative, but again it takes months before any benefits begin to appear.
     
  18. Pink

    Pink Senior Member

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    Good point, hip. But does it make sense to wait and travel to a treatment center for those tests? Or can my general Dr test for these viruses? And if they're also negative, then what?
     
  19. Hip

    Hip Senior Member

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    Your general doctor can test for them, but he may use the wrong sort of tests, and also may not have the expertise in interpreting the test results.

    If you are negative for all infections, there's not much in terms of treatment options, but you might want to look into whether you could have a different condition. Lots of illnesses can mimic the symptoms of ME/CFS, like anemia, lupus, hepatitis B and C, and many others.

    If you were exposed to mold, then you might have CIRS (chronic inflammatory response syndrome) rather than ME/CFS. CIRS has the same symptoms as ME/CFS, but a different treatment to ME/CFS, and there are many specialist CIRS doctors that can treat you using the Shoemaker protocol.

    Maybe this document might help: roadmap of chronic fatigue syndrome treatment.
     
    MastBCrazy, BadBadBear and Pink like this.
  20. Pink

    Pink Senior Member

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    I tested negative for all of those that can mimic cfs- lymes, lupus, sjorens, etc.
    My Dr actually did a blood test for mold issues, as well as heavy metals, both came up negative.
     
    Hip likes this.

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