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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
     
    Stretched likes this.
  2. Sushi

    Sushi Moderation Resource 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 don´t know anything about the infectious disease that you happen to have!
     
  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.
     
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  6. Hip

    Hip Senior Member

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    If you look at this roadmap of chronic fatigue syndrome treatment, 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: Jan 9, 2018
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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.
     
  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
     
  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.
     
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  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?
     
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  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.
     
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  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
     
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  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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  17. picante

    picante Senior Member

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    I saw an infectious disease doctor last Thursday. I took along the ICC diagnostic criteria and a recent review paper discussing the infectious nature of myalgic encephalomyelitis. It has over two pages of references for a 9-page paper. It covers which pathogens have been found in ME patient studies, which patient categories are helped by anti-viral treatments, the evidence for/against certain theories ("hit-and-run" infection, active infection, non-cytolytic infection).

    He was very eager to inform me that he didn't want to waste time & money testing me for more pathogens because nobody knows the causative agent of ME. He insisted on calling it Chronic Fatigue Syndrome although I informed him that CFS is not ME; it's a wastebasket category, not an illness.

    I told him I had tried a) Acyclovir when I had shingles (positive response) and b) a potent herbal antiviral later.
    Thereupon I got a lecture on how Naturopathic doctors are selling garbage without any scientific evidence that it does anything. So I informed him that the herbal anti-viral ramped up my immune system so that I was in bed with neck spasms for a couple of months. I also pointed out that if nobody does a study, there's no "scientific evidence".
    Nobody is up to date on the science being done on ME. But he did not want the materials I brought. He was citing old stuff, and was not remotely interested in learning more.

    IMO, this doctor is a faith-based doctor. He puts blind faith in allopathic medicine and its science, but not in naturopathic medicine and its science. My approach with BOTH is caveat emptor.

    I had to correct him again when he stated that there's no study concluding that ME patients are helped by antiviral meds. "It depends on the patient!" and told him about the discussions on Phoenix Rising. Some are helped and some aren't. If you average them out, that equals "no evidence".

    Excuse the long story, but blind faith in "Science" without any discernment on how it's done is one of My Pet Peeves.

    And it exhausts my precious energy reserves to try and reason with one of these docs. But I did get through, since he prescribed an antiviral (Valtrex). :thumbsup:
     
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  18. ahmo

    ahmo Senior Member

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    [​IMG]
     
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  19. alex3619

    alex3619 Senior Member

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    The problem with viral infections is you need viral titres, not antibody titres, to establish infection in the thoughts of sceptics. There is no mainstream treatment for enteroviruses, including Coxsackie that are firmly established. EBV on the other hand is treatable if its an active infection or a regularly reactivating one. So I would not bother getting viral titres for enteroviruses, but it might be worth it for EB viruses. The main issue here is that at best most doctors will only prescribe short term antivirals, weeks to months. Stanford is getting results from antivirals continued for at least five YEARS.
     
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  20. picante

    picante Senior Member

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    Hi Alex, I mentioned to this Infectious Disease specialist that PCR tests don't usually find the viruses in our bloodstream. I keep wondering if it's worth the money/energy to do those tests on CSF. My brain inflammation/cognitive symptoms are getting worse.

    What do you think?

    From my symptoms, I'd say my post-exertional immune activation is occurring in my brain & meninges. So meningo-encephalitis is my best guess. I've no doubt that my trigger ("mono") was meningitis, because of the symptoms I had during the acute phase in 1992.
     
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