posted
Hi, I have been on hi dose Valtrex for 10 months by CFIDS M.D. for EBV in my heart. He also assured me my IgeneX + but CDC- test was not Lyme. He told me I could get a "herx" to Valtrex for up to 1 year. I have felt TERRIBLE(T dysregulation, tinnitus, worse CFIDS symptoms, etc.) since on Valtrex, but the CFIDS M.D. felt this was a good sign, as those who don't feel well usually respond the best to the Valtrex.
I requested my local CFIDS M.D. repeat my Lyme test about 3 weeks ago. I am now IGeneX IgM+ and CDC+, and IgG IGeneX+, but CDC-. I am erhlichiosis 1:80 IgG, but - for other co-infections.
I have read that many have EBV with Lyme, and when one treats for Lyme the EBV may resolve. So, often no treatment for EBV is needed.
I wonder if treating EBV alone, without treating TBD's, in any way made Lyme/ co-infections worse or, even made my test results more positive. Anyone know anything about this? IGeneX said they did not feel my Lyme results were false+ from EBV.
I no longer see the M.D. who put me on Valtrex; my local CFIDS M.D. now treats me. I will discuss this with him next appointment in 2 weeks.
I'm wondering if I should come off the Valtrex, before I see an LLMD. I am in the process of finding one, and it may take several months to get an appointment. But, I feel crummy since Valtrex and would love to come off of it.
Any info appreciated.
14k
Posts: 51 | From Boston, Ma. | Registered: May 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Well, if you connect the dots you'd likely be better off treating both lyme and EBV...
Putting your western blot aside, you were suspicious for erhlichiosis so usually where there's smoke there's fire...
My LLMD runs Valtrex right along side the abx at times...perhaps you'd fare better on this kind of combo...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I'd suggest finding a LLMD. Stay on the Valtrex and tell your new LLMD about it. Patients with viral involvement seem to have a much longer recovery if not treated early, including myself.
If not suppressed, that family of viruses may give you some of the same symptoms, like fatigue, that Lyme will. You may also wish to search for post by "timaca", she has extensive experience with viral issues. I would strongly suggest testing for HHV-6, CMV and other herpetic viruses besides EBV. EBV and the "lesser" herpetic virus types are typically assaulted well by Valtrex or Famvir, but HHV-6 seems to require Valcyte instead.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
EBV and some of the other viruses can lower your immune system. Erhlichia also can lower your immune system.
the western blot tests don't directly measure for lyme or co-infections, the tests measure your immune response to the infections.
Therefore, if your immune system is low, you are less likely to come up positive on any kind of western blot test. (assuming you have the lyme)
It might be that the Valtrex helped reduce your viral load, which in turn increased your immune system, which increased your response to the western blot tests. That is just a guess, I could be wrong.
You really need to speak with an MD about changing your medicine protocols. Are you going to see an LLMD? They can talk to you about tick infections.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
oh, how high a dose of Valtrex each day? Is it possible that what is making you feel terrible is the side effects of Valtrex?
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
i found treating elevated EBV titers for 60 days useless and my CFIDS Dr refused to prescribe Valcyte or treat me with antibiotics so i dropped him.
i got treated by my LLMD with exactly what i requested.. 18 months later i am symptom free.
i doubt you're currently suffering from EBV, it's most likely a past infection and Lyme is causing titer to appear active.
i say treat Lyme & Co asap. read my story below.. good luck! -- sonicbmx
-------------------- "The hell with Drs.. we have each other!" My story began here:
posted
Tough to say. That's the honest answer. There are a LOT of people who truly believe in the chronic viral etiology of CFS. These people are as adament as people on this board in their beliefs. I do read those boards as well, and have not yet convinced myself what the etiology of my illness is (or a combination). To that end, I am actively treating EBV, and taking a break from antibiotics because, quite simply, while I have improved on antibiotics, I have not had any significant change in a LONG time, and am hopeful that this may help me. I've been on Valtrex for 1 month now. Too early to say for sure, but I'll give it another month or two.
Posts: 99 | From Bucks County, PA | Registered: Aug 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
My 2 cents is run a bunch of tests, and treat what looks most obviously wrong.
I'm going to cut and paste into this post something that I emailed to someone recently...Hope it helps....Timaca:
First make sure your son has been tested for the usual causes of fatigue: iron deficiency, B12 deficiency, thyroid issues, gluten sensitivity/celiac disease, vitamin D deficiency, etc. Here is an article on Vitamin D: http://www.ncbi.nlm.nih.gov/pubmed/15989379
Other possible causes of fatigue include environmental issues (mold for example); chemical sensitivities and infectious pathogens.
If your son feels the same while traveling, then it is likely not the environment. Some people feel better on vacation and then find out that mold is an issue in their homes. A book entitled Mold Warriors by Richie Shoemaker addresses this issue. http://www.moldwarriors.com/
Some pathogens that are implicated in CFS include: tick borne pathogens (lyme, bartonella, babesia, erhlichia), enteroviruses, Herpes viruses (including HHV-6, EBV, CMV, HHV-7) and Chlamydia pneumonia (Cpn). It is possible to have more than one pathogen causing a problem in a person.
Taking a good history of the patient is important. For instance, if it was found that they were out of the country and drinking raw milk, then brucellosis might be a consideration.
In general, ARUP lab is the best lab for enterovirus testing. Here is a link to what tests to order at Arup. http://www.enterovirusfoundation.org/chronicinfections.shtml The doctor does need to specify that the blood has to go to Arup for it to go there.
I tend to get other infectious pathogens (HHV-6, EBV, Cpn) tested at Focus Diagnostics Lab. Again the doctor has to request that it go to Focus labs. http://www.hhv-6foundation.org/testing.html#elevate Some basic tests to start with (and their code numbers at Focus) are: 2420 EBV panel 23120 Cpn antibodies HHV-6 IgG and IgM Antibody Panel, IFA, serum (code number 40540) Cytomegalovirus IgM and IgG, Elisa: code 2385 Parvovirus IgM and IgG 41380 HHV-7 IgM and IgG 40543
The criteria he used is: Patients with "high" antibody titers against HHV-6 IgG ≥ 640, EBV VCA IgG ≥ 640 and detectable EA Ab at 1:160 or HHV-6 IgG ≥ 320 if EBV VCA IgG ≥ 1280 and has detectable EA Ab at 1:160 (measured by the average of a minimum of two time points obtained during screening at least 3 weeks apart).
If tick borne disease is a possibility, consider testing at SUNY Stonybrook: http://www.path.sunysb.edu/labsvs/ticklab.htm If you call the lab, they can direct you to the best tests. They may even send out a test kit for you to take to our local lab.
Dr. Chia also wrote an article on CFS and Cpn, which your doctor might be able to get for you: http://www.jstor.org/pss/4460913Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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