The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Will an Infectious Disease Dr. Do???

Discussion in 'ME/CFS Doctors' started by roxnhead, Apr 15, 2016.

  1. roxnhead

    roxnhead

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    I am happy to have some positive labs!!! Seems like a silly thing to say but after so many years... Anywho Coxsackie B 1, 3, 5, 6, positive and EBV VCA 3.27 High and EBV EBNA positive. Where do I go from here?

    I live in Northern Ca. and am in process of trying to get into UCD Infectious Disease. Is this a waste of my time. Are most infectious disease Dr.'s dismissive about these test results....... do they treat and diagnose Enterovirus illness?

    I really do not want to wait 6 mos to year to see a CFS Specialist, pretty absurd.;) But what are my options??? Please advise as to what your first steps were after diagnosis:). I appreciate any and all advise given. Thank You, Be well, Roxnhead
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Probably.
    I think that most would not. I'd guess you have heard of Dr. Chia in southern CA? Many have found that if you go to an infectious disease doctor it would have to be one who respects this sort of finding. You might ask here on the forum for recommendations. If you are comfortable giving a more precise location members might be able to suggest someone near you. Best wishes with this. It is not easy to find an attentive and knowledgeable doctor.
     
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  3. halcyon

    halcyon Senior Member

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    I don't want to discourage you in case they might be able to help you, but I've not had a good experience with ID doctors that aren't already familiar with ME. The first ID doc I saw dismissed my positive enterovirus stomach biopsy test results entirely. The second ID doc I tried to see rejected my referral. My doctor tried to refer me to the UCD ID clinic next and I apologize the details are fuzzy but I believe they rejected the referral as well. I get the sense that most ID docs these days deal with HIV and hep C and not much else. I eventually got a referral to Dr. Chia and the Stanford CFS clinic instead.

    This was pretty much where I was at too. I was desperate and didn't want to wait 6-12 months but that's what I ended up doing anyways because nobody else wanted to take me as a patient. I did start taking Equilibrant on my own and eventually saw Dr. Chia several months later and was put on additional antiviral drugs.
     
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  4. msf

    msf Senior Member

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    Not if they donĀ“t know anything about the infectious disease that you happen to have!
     
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  5. roxnhead

    roxnhead

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    Thank you all for your replies, this is what I suspected. I think I will spend my energy on Dr Petersen or Whittemore Institute. I was a resident of Lake Tahoe in the 1980's, whether or not that has any bearing whatsoever, I don't know?

    Should I look for a Naturopathic or Holistic practitioner in meanwhile?

    I am very blessed to have a primary care physician that specializes in rheumatology. She has been awesome and is very interested in this journey. I wish we had more knowledge about how to proceed. She has prescribed valacyclovir 2000 mg daily. She also has prescribed low dose naltrexone. My worries are the muscle wasting, myositis and the possible cardiac involvement.
     
  6. Hip

    Hip Senior Member

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    If you look at this roadmap document, it gives the viral titer levels that ME/CFS doctors consider evidence of the virus likely playing a causal role in your ME/CFS. The roadmap also indicates which antiviral treatments you can consider trying.

    So for EBV:
    For coxsackievirus B:
     
    Last edited: Apr 19, 2016
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  7. Silence

    Silence

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    I live in Northern CA also and emailed the chief of infectious disease at UCD with similar esults to you and also mentioned my CFS. He basicly said he doesnt see any significance with my results and that he doesnt treat cfs. If you are near sacramento perhaps you can see Dr. Powell. Hes a rheumatologist that treats CFS and related illnesses - mold, heavy metals, infections etc.
     
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  8. ZuluX

    ZuluX

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    @halcy
    and did the drugs work for you?
     
  9. halcyon

    halcyon Senior Member

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    While they haven't provided recovery, they do suppress or lessen a lot of the more uncomfortable symptoms.
     
  10. Daffodil

    Daffodil Senior Member

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    @roxnhead how interesting that you were in lake Tahoe in the 80s! wonder if that means something.

    anyway, I would definitely choose dr. demeirleir who comes to whittemore Peterson institute very often now to see patients. I think they are going to start doing a lot of testing at the lab right there, too.

    xo
     
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  11. roxnhead

    roxnhead

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    Thank you, I checked with Dr. Powell and he doesn't accept insurance-cash only;) I just concluded my "interest" in UCDavis infectious disease - my appt. yesterday went as expected- flagged high titres of EBV & Coxsackies B in their opinion is of no interest or noteworthy :mad:. My high cpk- myositis elicited feigned conversation. The walk-away, why are you here?:thumbsup: My thoughts exactly!!!
     
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  12. halcyon

    halcyon Senior Member

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    You have elevated CPK and symptoms of myositis and they don't think elevated coxsackie B titers are noteworthy? Wow.
     
  13. roxnhead

    roxnhead

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    There suggestion is to go back to primary care, retest cpk if elevated- MRI then muscle biopsy. Has an enterovirus
    been found in muscle biopsy??? Would "modern" medicine look for enteroviruses or would it just be considered unknown or idiopathic if not conclusive?
     
  14. halcyon

    halcyon Senior Member

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    Yes, enterovirus has been found in muscle biopsies in both ME and myositis in a research setting. I doubt most doctors would look for it in a muscle biopsy.
     
  15. Cohen2

    Cohen2 Senior Member

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    My gp referred me to an infectious disease doctor. I've got an appointment in Feb and was going to make a thread asking if I should bother. Looks like it will be a waste of time as expected
     
  16. Cohen2

    Cohen2 Senior Member

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    The annoying thing is they're so much easier to get in to than other public specialists. I'm going to have to wait 4 months for rheumatologist if I get accepted
     

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