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4451049 tn?1387153437

HHV6

I'm confident that part of the reason that I am not making any progress with TBI treatment is because I have a very active HHV6 infection....  Not the easiest thing in the word to treat for, but does anyone have any ideas?

I'd appreciate any leads.  Thanks!
14 Responses
Avatar universal
What does your doc say on this topic?  I just did a quick search for -- hhv lyme -- and got quite a lot of data.
4451049 tn?1387153437
Well, doc doesn't really say much... Just basically that there is no treatment that is effective....  And that's that!  But I'm just not willing to take that as an answer...  
Avatar universal
Good for you!  If you are up for it, or have someone who can help you dig around online, you might some references or articles or whatever about a doc who is knowledgeable in concurrent HHV and Lyme infections.  

LLMDs (which as you know are not degrees or anything formal, just patient slang for a doc who understands Lyme etc.) are always trained in some specialty that their interest in Lyme and other tickborne infections (TBIs) sprang from.  My LLMD started life as an immunologist, which he still is, but he has a specialty in Lyme stuff, but the immunology background informs what he does in Lyme.  

So if there's a Lyme doc who has a background/particular interest in HHV (or more broadly, in whatever field HHV belongs), that might give you the advantage of double coverage:  a doc who know both halves of what you are dealing with and can see the crossover potential for treatment.  The chances of finding that combination may seem small, but may not be -- can't hurt to look around for it.  That way you get double coverage.

And I agree with you about not being willing to take 'there's no effective treatment' as the last word.  Bah humbug!

Here's an interesting link from the TruthAboutLymeDisease website from ~5 years ago, but it frames the issue well.  You might motor over to that site and see if there is any more data or some leads to who might be pursuing this aspect.  I'll also send the link to you in a private message through this system in case the 'bot blocks the link.

http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=55
Avatar universal
Ah, looks like the link is intact above.  But it's also in a private message to you, via this website.

From leads like this, you might be able to locate MDs who are researching and/or practicing in that field, and then consult with them or get a referral or suggestion of someone in your area who might be knowledgeable.

Let us know how we can help, or if this idea sounds like it's off the path.  J.
Avatar universal
My doc recently put me on Immunovir to help my immune system.  From what I read, it's useful against viruses.  It's not patentable in the U.S., so he orders it from a Canadian pharmacy, which drop ships it from the U.K.

You might look it up and see if you think it might be useful for you.  I think it costs about $150 a month.  
4451049 tn?1387153437
Thanks.  Never heard of it.  Do you notice any improvement with it?  

You wouldn't happen to know the name of the pharmacy would you?      
Avatar universal
I found it online.  Will send you a private message with the link.
Avatar universal
I am a physician.  I have been treated by Dr. A Martin Lerner in Beverly Hills, MI.  He is a quiet man, but at the top of his field.  I highly recommend him.

Another physician well-versed in this is Dr. Montoya at Stanford University.  Both are Infectious Disease Specialists.  

This is a serious and often debilitating condition, as you can probably feel the effects of already.

Hope you get well soon.  Good luck.
Avatar universal
Interesting that you put ID docs at the top of your list.  In the experience of quite a few of us out here, ID docs are too often oblivious to Lyme disease and utterly uninterested in anything more than a couple weeks of doxy regardless of whatever else is going on in the patient.

And btw to readers:  note that the reference to Beverly Hills above is in *Michigan*, not California.  I skipped right over the "MI" after the Beverly Hills reference.  

And to anonymd, would you outline your treatment here, just for general informatiion?  Would be interested to compare with my own experience.

Thank you.
Avatar universal
and PS:  it is not reassuring to note that the Lyme disease initiative hosted at Stanford Medical School is located in:

--  Stanford Medicine » School of Medicine » Departments » Psychiatry --

Psychiatry?  Really?  An odd place to put an infectious disease.  Is syphilis research also located in the psychiatry department?

Will be interested to read more about the work being done, but my alarm bells are going off.
Avatar universal
I met a Lyme patient who was finally getting in to see Dr. Montoya at Stanford.  Dr. Montoya is a world famous doctor/researcher for ME/CFS.  (The Lyme patient believed she had both Lyme and ME/CFS.)

Here's the kicker: She'd been on his waiting list for 4 years!  There are so few doctors who know anything about CFS that people come from all over the U.S. and the world to see him.

I do not know how long his waiting list is currently, but I wouldn't be very optimistic about getting in to see him in the near future.
Avatar universal
I think those two suggestions of ID docs was about treating HHV6, not Lyme.  HHV6 is one virus suspected of being a trigger for ME/CFS. There are very few docs who know anything about this virus. It's just not well known.
Avatar universal
http://www.bayarealyme.org/about/progress-so-far/stanford-medical-center-forms-lyme-focused-research-group

I found this announcement on the Bay Area Lyme foundation's website. It looks like the Stanford Lyme focused research group is a multi-disciplinary effort, not just in the psychiatry department.
Avatar universal
That makes sense.  I did wonder if the person who made the post I was reading came in through or is still affiliated with the psychiatry dept ... but the research is overseen by a few bureaucratic layers higher that are more than just psychiatry.  Would be nice if they would make that clear.  
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