1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

HHV-6 Doc somewhere remotely close to Wash. D.C.

Discussion in 'ME/CFS Doctors' started by nventor, May 21, 2010.

  1. nventor

    nventor

    Messages:
    93
    Likes:
    0
    Hi everybody,

    My name is Roger and I'm from Northern Va. and recently dx with HHV-6 EBV and
    a very compromised immune system, oh, and Lyme, which I probably should have listed
    first. I have been searching for a doc for several weeks, have seen one, spoken and or emailed
    many but not much luck. I have a relationship with Johns Hopkins, but they do not seem to
    have anyone directly specializing in HHV-6, my biggest worry. It seems from my research
    that Dr. Brewer out of Kansas City Mo. is about the best, but I was told to call back in the fall to get on the waiting list. Anyway, any and all help would be appreciated.

    Regards,
    Roger
     
  2. Hope123

    Hope123 Senior Member

    Messages:
    1,168
    Likes:
    661
    You can try googling for and e-mailing the HHV-6 Foundation which is based in California and has an interest in CFS. Their staff responds very quickly usually and are quite helpful.
     
  3. Gemini

    Gemini Senior Member

    Messages:
    397
    Likes:
    301
    Roger,

    Dr. Ablashi, who discovered HHV-6 while working at NIH in Bethesda, may know of a physician in the Washington, DC area. As Hope123 indicated you might be able to contact him through the HHV-6 Foundation.

    Gemini
     
  4. nventor

    nventor

    Messages:
    93
    Likes:
    0
    Thanks for the help, I 've emailed back and forth with the kind folks at the foundation and they did give me a name in NY. I have not follwed that up yet, I still can't believe living in the Wash. D.C. metro area that there are not plenty of docs at the many universities here familiar with treatment options, there's not. Have you or anyone else read Dr. Brewer's
    paper posted on the web at http://www.plazamedicine.com/hhv6/hhv6_1.html. Of the reading I've done on the treatment of EBV and HHV-6, which is more hours
    than I have time to spare (desperation I think) this guy really seems to be on the money. The problem is good luck getting an appointment, I was told after
    what I thought was a convincing argument as to why I needed to see him asap, that I needed to call back in the fall to get on a waiting list. I started Valcyte yesterday
    under the care of a wonderful doc at Hopkins who like another infectious disease doctor expressed to me earlier in the week, really was not sure if HHV-6 and EBV
    are really a problem and or how to treat or whether to treat at all. My labs prior to discovering these two viruses were so bad my family doc and an internal med. doc thought I
    had some form or another of cancer. So, as you can probably tell, I'm overwhelmed as what to do, but I will try to figure it all out, and again thanks for the reply.
    Regards,
    Roger
     
  5. Timaca

    Timaca Senior Member

    Messages:
    420
    Likes:
    75
    nventor~ At least you are undergoing some treatment. Was your testing done at Focus Diagnostics Lab? If so how does it compare with the info on testing on the HHV-6 website? (That may help convince your doctors.) Have you been tested for enteroviruses at ARUP lab? www.enterovirusfoundation.org. That may also be part of your problem (it is mine). How long are you on valcyte for? (I've been on valcyte).

    Good luck, Timaca
     
  6. nventor

    nventor

    Messages:
    93
    Likes:
    0
    Hi Timaca,
    The blood work was originally done by LabCorp as a follow-up to a CBC with a very high Monocyte count. 2.1 reference range 0.1-1.0. Blood tests submitted
    the following week by my family doc (again to LabCorp) revealed an elevated EBV Ab VCA, IgG of 5.5 ref. range positive >1.0 EBV Nuclear Antigen Ab, IgG >8
    ref. range positive >1.0 and HHV-6 IgG antibodies of 1.73 ref. range >1.10 and C-Reactive Protein of 96.4 ref. range 0.0-4.9.

    I've also been treated with antibiotics for ten of the last twelve months for Lyme. I would like to say for one reason or another I have exceptional access to Johns Hopkins in Baltimore.
    Surprisingly, Hematology was really concerned with the two co-infections, but that is where the concern seemed to slow. All you have to do is search the most reputable University hospital
    sites for infectious disease docs and for the most part you will find nothing for HHV-6, unless related to transplants. I did however find at Hopkins a doc that was willing to try Valcyte on the condition I under go weekly CBC blood draws, and see him every month, sooner if I experience any problems. I was however advised to stop taking Valtrex, begun by my family physician which
    did seem to help. Another quick point, if I understood the paper posted on this site on Tuesday I believe, by Dr. Martin Lerner, in his study patients with EBV (mono) remained
    on Valtrex and also took the 1800 mg daily of the Valcyte. Any comments on this would also be appreciated. As for how long I will be on Valcite, I don't think this doc is
    thinking long term, this is my third day on Valcyte, without a ramp up in dosage and so far no real side effects.

    P.S. I know this post is too long but if you have been or your are where I'm at, you know it is like being on an island, the playing field is so controversial, the opinions as to whether
    HHV-6 is really even a ailment, if CFS even exists, or are you just loony is beyond frustrating, do they think all we have to do in our lives is complain?
    Thanks,
    Roger
     
  7. Timaca

    Timaca Senior Member

    Messages:
    420
    Likes:
    75
    So, I posted a reply and then lost it, so I will try again. Apologies in advance if two posts appear. I'll make this one shorter....for I'm running out of time to be posting...

    I would get testing done at Focus Diagnostics lab in CA. Your result for HHV-6 does not look that high to me. Even EBV (IgG) does not look that out of line. I've been tested for a LOT of pathogens, and my ID doctors are not concerned if I have results in the 5-7 range (with >1 being considered abnormal). However, if my antibody titer is in in the 1:320 or 1:640 range, or is as high as the lab measures, then the doctors take a second look.
    Here's some info on testing: http://hhv6foundation.proboards.com/index.cgi?board=testing&action=display&thread=26

    I do know people personally who were sick with HHV-6 and are now well. It is a real illness.

    I would also get tested for enterovirus at ARUP. Here's that link: http://www.enterovirusfoundation.org/chronicinfections.shtml

    How long have you been ill? Why were you treated for lyme? What are your symptoms? Why are you suspecting an infectious cause to your illness? I have been where you are at. I know what you are going through.

    Best, Timaca
     
  8. nventor

    nventor

    Messages:
    93
    Likes:
    0
    Thanks, you know a lot more about the subject than I do. I want to reiterate that the Hematologists (all four of them) at Hopkins were very concerned
    with the levels of HHV-6 and EBV. As far as the titer levels I'm not sure where they are or how they show up on a lab report, the time I've spent
    researching is almost exclusely been on treatment, the heck with the details, I know, I'm a dumb hick that designs products and all of a sudden,
    it seems I have to manage and/or be in charge of my own treatment, a role I would rather surrender to a profesional but that doesn't seem
    possible at the present. Have you read Dr. Brewers paper yet ? and if so, what are your thoughts?

    As to when I was first diagnosed with Lyme it was last year, I became very ill, thought I had a flu but the Western blot test showed that indeed I had a
    very positive result for Lyme. I also live in Loudoun county Va. which I have been told is now number one in the country for Lyme. Symptoms of my illness are
    mostly flu like in nature with fatigue and one sickness after another, oh, and my immune system is so compromized, they thought I had cancer, actually went three weeks ago to to
    the Sydney Kimmel cancer clinic at Hopkins for review.
    roger
     
  9. Timaca

    Timaca Senior Member

    Messages:
    420
    Likes:
    75
    Hi Roger~
    It is a plus that you have doctors that are concerned. I wouldn't call yourself a dumb hick, we are all in this together trying to figure out what we are sick with and how to get well. It is preferable to get a right diagnosis, or you (and me) could be barking up the wrong tree. You've probably read this info about testing on the HHV-6 website: http://www.hhv-6foundation.org/testing.htm And perhaps you are familiar with what I posted about EBV on the HHV-6 patient forum:
    http://hhv6foundation.proboards.com/index.cgi?board=testing&action=display&thread=182

    If I follow your story correctly, you were healthy until last year when you got the "flu" or something like it. A positive WB sent you down the Lyme treatment route. Did you see any improvements from the antibiotics? Did you have a "herx" reaction? I get quite ill when I take both antibiotics and antivirals...it's like "clockwork" in me (to quote one doctor). Did the cancer clinic clear you of cancer?

    If indeed you started with Lyme, then it is possible that your immune system took a hit (and you mention a compromised immune system), and thus other pathogens can reactivate. I'm dealing with multiple pathogens, some of which I suggested you test for. For example, if you have enterovirus, valcyte won't help. And the best lab for enterovirus testing is ARUP (trust me I've been tested at numerous labs for it). If you have EBV and HHV-6 then valcyte will help. If you don't have it, then you are taking an expensive, fairly toxic drug for no reason. (This is why I suggested further testing at Focus Diagnostics Lab.) If you were bitten by a tick, then you could have other tick borne pathogens, such as bartonella, babesia, rocky mountain spotted fever, etc. Have you been tested for other tick borne pathogens?

    We do have to learn as much as we can as patients, for the knowledge is not widespread among doctors (to put it mildly). I have looked at Dr. Brewer's paper that you posted. I don't see anything that would help you confirm whether or not you actually have HHV-6. Keep reading, keep learning, keep testing, and keep working with the doctors at Hopkins.

    Best, Timaca
     
  10. nventor

    nventor

    Messages:
    93
    Likes:
    0
    Hi Timaca,
    You make a lot of good points and suggestions, I'm definitely confused but I' am not alone. I have now seen multiple Dr's. and none seem to agree as to whether
    the earth is spinning or we are all walking really fast. For instance, Most ID docs do not think anything you and I have discussed to really be an illness.
    Most seem to think that a good round of placebo's would be as effective as any treatment. Another example, I was told Wed. by one of the premier ID's in the bus'
    that Herxing was a bunch of internet hype and was never applicable in the case of virus's. Don't I have to believe in my doctor? I really liked and respected
    him, and I know he really is a super bright guy with good intentions. He spent probably an hour and a half with me, you can't ask for more than that. The truth probably is
    they really don't know a lot about these illnesses and are just beginning to scratch the surface.

    Another example is the docs are split again on treating Lyme with the majority claiming that one thirty day course of antibiotics is all that is necessary,
    any symptoms beyond that term are either residual or between your ears. This I might add is the position that the National Association of Infectious
    Disease Dr's also subscribes to. Now some insurance companies are following their guide lines and refusing to pay any claims regarding treatment and the association is
    pursuing "Lyme Literate Docs" aggressively and some cases having their license's yanked.

    I'm sorry that I ' am coming off so negative and confused, but it is not an act, it's genuine, like a lot of people here I'm tired of being sick, tired of the system
    and very frustrated. Oh, in answer to your question about an HHV-6 confirmation, the Hematologists at Hopkins are confident that I have both active HHV-6 and EBV,
    probably co-infections of the Lyme.
    Let me close in saying that I'm grateful for your comments and it is indeed comforting to communicate with someone in a similar situation, as you are really
    the first that I've had this much to say to through out my illness other than talking to Docs.
    Thanks
    roger
     
  11. Timaca

    Timaca Senior Member

    Messages:
    420
    Likes:
    75
    I do understand that most ID doctors are not aware of infectious pathogens as a possible cause of CFS in a subset of patients. I am fortunate enough to know some who do believe this way, and are working very hard with research and in the clinical area to help patients like us.

    I do not think herxing is a bunch of hype, especially in me, and I won't go into why, but I am fortunate to also have an ID doctor that knows and believes it happens in me. He has even joking suggested that I stay in town (he's an out of town doctor) whenever I start a new medication so he can keep an eye on me. I once ended up in the ER with extended tachycardia. The ER doctor was NOT happy with my heart. This was followed by a flu like day with a circular rash appearing on my abdomen, and then a stiff neck where I could not turn my head in any direction whatsoever for 2 weeks. Those symptoms can hardly be imagined. They have been documented. What happens to me is consistent and remarkable. Any ID doctor who doesn't believe in herxing can trade places with me whenever I start an antiviral or an antibiotic.

    You are so correct that they don't know a lot about this illness. I am so hoping that this will change.

    I am well aware of the Lyme controversy between the ILADS doctors and the IDSA doctors.

    You are not negative. I am glad you have some doctors who think you have some reason for your illness and are willing to treat you. With any luck, you will get well with valcyte. I know some people personally who have. If not, check into enterovirus. I, and a friend of mine have that in addition to HHV-6, EBV and other pathogens. There can be more than those two viruses making you ill.

    Best, Timaca
     
  12. nventor

    nventor

    Messages:
    93
    Likes:
    0
    Hi again Timaca,

    I do appreciate your help and input, I also know when my family doctor put me on Valtrex, which I have read will treat EBV,both my eyes
    turned blood red for a month. I have read and experienced first hand the Herxing phenomena, I believe it is, just as you described.

    I would also like to take a moment and ask how you are doing? I have spent so much time going on about my problems I never asked how
    you are feeling or how long you have been ill and are you finding any relief from your symptoms and if so what are you doing that helps you?
    I hope you are improving and I wish I could answer any questions that might help you, but I think that it is obvious I've not yet figured much out
    other than which way is Oz. I hope as I journey into hopeful wellness as yours also, I may be able to find something that could help you and
    others out, I know the one thing we would all like to due is return to a time when we felt good. Well, I'm out to see a movie, hope all is well.

    Kind Regards,
    roger
     
  13. Timaca

    Timaca Senior Member

    Messages:
    420
    Likes:
    75
    Hi Roger~
    I've been ill for 6 years. Prior to suddenly getting ill, I was very, very healthy, and very, very athletic. I could not get a diagnosis in my home state. I ended up with a "probable" Lyme diagnosis at Columbia-University Medical Center. Antibiotics helped a great deal, but I relapsed when they were stopped. I stumbled onto the possibility of viruses, and it did appear that they were also a part of my problem. I have improved significantly because of antiviral and antibiotic treatment. My story can be found in more detail on the HHV-6 patient forum.

    Hope you had fun at the movie.
    Best, Timaca
     
  14. nventor

    nventor

    Messages:
    93
    Likes:
    0
    Thanks for the reply, I did however take Dr. Lerners (among others) with points highlighted for my hour and half long consult, but there seemed
    to be an issue as to "what" journal it was published in are far as to it's credibility. You know, you just can't make this stuff up. I feel like I'm on a
    tilt a whorl at a carnival with the confusion and the contradicting info either spoken or written. What happened to "take two
    aspirin and get a good nights sleep" Will this crap ever go away?
    Regards
    roger
     
  15. nventor

    nventor

    Messages:
    93
    Likes:
    0
    I missed something also, one I'm new to posting anything about anything and two, my manners. I seem to be self absorbed at the moment
    which is not my general demeanor and did not ever offer you my best wishes for a speedy recovery for you and yours.
    Sincerely,
    roger
     
  16. nventor

    nventor

    Messages:
    93
    Likes:
    0
    You and others have already been more help than I could have ever imagined and it probably couldn't have come at a better time.
    As I've been moderately sick for a really long time, really sick as of late, the whole HHV-6 EBV dx didn't really sink in until this weekend.
    Unfortunately, I really didn't handle the whole matter that well nor up until now did I even come close to realizing the possible severity nor the life
    style changes that may be necessary to accommodate treatment. Anger, confusion, poor me syndrome, all bit me in me butt.
    So again, thank you and everybody for your help and if some of my posts were negative, I apologize, I will work through it
    rather quickly, I've got plenty of experience to draw upon.
    Wishing everyone well,
    roger
     
  17. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    950
    Likes:
    91
    It is a mother f***ing mess, and you don't need to apologise for yr attitude.
    I've been sick 16 years, I saw Lapp once, Brewer a couple of times. I finally wound up on amy yasko's protocol (www.ch3nutrigenomics.com).
    I basically think Rich Van K (he posts on this website) and Amy Yasko have nailed it.. I think whatever the original trigger, we all wind up with compromised immune systems and broken detoxification systems, mitochondria that don't work, and screwed up hormones, no stage 3&4 sleep, no growth hormone, low blood volume and on and on.
    In short, a methylation cycle that isn't working.
    The question is what's the best solution? what's the optimal treatment?
    You can see from this site that ppl are doing anything and everything, with varying degrees of success.
    A lot of ppl go after the pathogens aggressively, but I worry that if the underlying immune system is broken that you[re putting the cart before the horse.
    I read somwhere on here that Prof Nancy Klimas in Miami tries to build the immune system up with immune modulators before she brings on the big guns.. the antiviral drugs or whatever.... I believe her rationale is that she wants to save the drugs until they can be used to best effect by the body so that a person doesn't develop resistance to them.
    I think the poster goldiland posted this..
    I would think you would also want to use these drugs for the shortest period possible... because valcyte esp. is very toxic.
    Furthermore, I worry about long-term abx destroying the gut ecology.. and some antibiotics have immune modulating properties...Difficult to know if one is feeling better because one is killing off an infection..or just modulating the immune system.
    Also Valtrex modulates adenosine and high adenosine can inhibit methylation.....
    I realise some of this will sound like greek to you...but just putting it out there ...food for thought.
    I think the timing or sequencing of treatments may be important...Like should you make sure your detox pathways in the liver are functioning before you attempt drugs that could cause die-off.?
    I'm still working my way thru this maze.
    If you search MoJoey on this site, you will see he has seen most of the top cfs docs in the country and aggressively researched txts. He's got an interesting story.
    also jamie deckoff jones recently had a v. interesting piece on aggressive antibiotic (abx) protocols on her blogspot.
    ok, if you're still reading, I just wanna finish by saying that I think the autism folks.. the DAN folks are years ahead of the CFS docs...and it can be helpful looking at what they are doing.
    Yes... i think autism and CFs are pretty much the same thing ...(thanks Rich and Amy).
    good luck
     
  18. nventor

    nventor

    Messages:
    93
    Likes:
    0
    Hi Aquariusgirl,
    Wow, good for you, that post was right on the money and mirrors my frustration. Did you read Dr. Brewer's paper
    http://www.plazamedicine.com/hhv6/hhv6_1.html ? He speaks about Transfer Factor and its constitution primarily originating
    from cow and egg Colostrum, plus he does something "that has activity for HHV-6 included in its scope of TF activities". His
    approach in this case is via immune modulation.

    As to Dr. Brewer himself, I emailed him with a brief synopsis (I'm mean like a paragraph) no reply, left a message with his nurse, no reply,
    called his office, pushed buttons until I got a life form on the phone, explained briefly why I thought I needed to see him ASAP.
    I was told to call back in the fall and at that time I could get on a waiting list. What's the blog acronym for "kiss my ass". That's
    what I felt like saying, but as we learn early on, if we confront or challenge, then we are branded a Heretic, you know what I'm getting
    at, a loony, its all in your mind. Then, that stigma can follow you for years, you must appear at least, to be submissive, you know, in the
    presence of greatness. Wow, you sure can tell I've been around the block. I do however think that Dr. Alabashi and Dr. Brewer may make the
    most since from what I' ve read. What are your thoughts of the treatment you received from Dr.Brewer?

    And as far as the Valcyte being toxic and a carcinogen in mice, no way, a fricking rat could not have lived long enough taking that crap to develop a tumor.
    Anyway, I'm trying Valcye and Valtrex and I'm off abx's, but I really feel like Hell since beginning Valcyte, worse today on day 6, and don't know how much longer
    I can hang, it probably does kill HHV-6 along with everything else, even athletes foot.
    Thanks,
    roger
     
  19. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    950
    Likes:
    91
    i did immune transfer 64 with brewer. he wldn't rx valcyte for me.. since I hadn't started a family..
    the TF did help...knocked me on my ass...but prolly reduced my viral load a bit...but in the long term not sure how helpful it was on its own.
    I thought he was terrific. Terrific guy. Good doctor. OPen minded. dedicated. Not money grabbing.
    I would go back to him, if Ithought he had anything new to offer me....
     
  20. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    950
    Likes:
    91
    that paper on his website is 10 yrs old btw....if i read the footnotes properly
     

See more popular forum discussions.

Share This Page