Long Term Chronic EBV

[pvn]

Has anyone experienced long-term issue with elevated EBV numbers going up and down, but aways elevated numbers? Which, I think, is termed "chronic/active infection."

If so, how long did it last? Or, is lasting...

[PlateletGal]

P.S. ~ You may want to consider googling "The Roadback Foundation" and/or other search for avenues that may help your condition. Of course discuss everything with your physician and also research the antibiotics that they use in these protocols.  I don't know much about Reiter's Syndrome, but I am reading that Chlamydia trachomatis is the bacteria most often associated with Reiter's syndrome acquired through sexual contact. Several different bacteria are associated with Reiter's syndrome acquired through the digestive tract, including Salmonella, Shigella, Yersinia, and Campylobacter. People may become infected with these bacteria after eating or handling improperly prepared food, such as meats that are not stored at the correct temperature.

As far as the lump in your palette... consider talking to your physician again as to why she isn't concerned about it. If you aren't satisfied with the answer, you can always get a second opinion.

Best,

PlateletGal

[PlateletGal]

I've never heard of the Marshall Brown protocol, do you have information on it ?   I have heard of the Marshall Protocol (Dr. Trevor Marshall) and I know that other physicians such as Dr. Mark Shaw and Dr. Garth Nicholson are having success with antibiotics. If I remember right... Dr. Shaw was seeing about 80% success in his patients.

When you were on antibiotic therapy, were you having any herxing (detoxing) symptoms ? Normally a person feels worse on antibiotic therapy because the pathogens that are responsible for the illness are dying off. It is very similiar to doing a detox diet. Of course you may note that people who frequently do detox diets say they feel better after dieting.

[Padro46]

What type of Doc are you seeing, Does He/She specialize in EBV/CFS

[mranxietyoftheeast]

The first antibiotic protocol was 1 year of doxy and ripfampin (Phase III / Clinical Studies).  

I am currently taking doxy every other day as prescribed my Rheumie (a similar version to the Marshall Brown protocol.

Neither has helped my pain / fatigue.

[PlateletGal]

Which antibiotic protocol were you on and for how long ?

[mranxietyoftheeast]

Hi.  I am new to this board.  I've enjoyed reading the above stories.  Very informative.

After six years of blood test after blood test after blood test.... I've been diagnosed w/ Fibromyalgia, Osteoarthitis and a touch of Reiter's Syndrome.   I've tried many different protocols (i.e. dual antibiotics (Doxy and Rifampin) for one full year for Reiters Syndrome.  No help.   I finally ound a CFS doctor who said my EBV antibody were way to high indicating "Active" EBV (there are three different IgG readings).  After  30 days of Valtrex, my doctor switched my prescription to Famvir.   I've been taking Famvir for about three weeks w/o much improvement.    I also started taking Lyrica (just started this week) for my FM.   Obviously too early to judge its effectiveness.  In addition to the above, I am taking Doxy (100MG) every other day for my Reiter's Syndrome;  Tramadol / Ultram for my pain: Flexiril for pain or to sleep;  and an ocassional Xanax for anxiety.    My question to all is:  1) Any other thoughts on how to treat CFS/Chronic EBV?     2) I've been getting a very small lump on the roof of my mouth near my palette.  This very small lump comes and goes.   It can disapear over night....then return the following day and stay w/ me for another 5 days...then disapear ..the reappear.    I discussed w/ my CFS doctor last night and asked if I should a biopsy.   She was not concerned about this lump.     My question is ... should I be????

Thanks for your help!!!