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CMV Infection.. need some input! .. Valcyte

Messages
37
Hey there,

i would like to have some input.. hope you can help me. Short: been sick since 4 1/2 years, 3 1/2 years antibiotics for lyme, bartonella, babesia. Stopped antibiotics because nothing more happend, got better, but have still symptoms left.

The symptoms i have left are a type of mononucleose-like.. feeling like have the flu, no appetite, no energy, sometimes restless legs, body is hurting all over quite a bit, headache..

When i was tested for viruses last year, I've had an LTT (Lymphocyte-Transformation-Test) for herpes 1-6 viruses, which is highly positiv if the stimulationindex is over 20. I've had 65 for CMV, all other viruses were latend.

My Borrelia, Bartonella labs are meanwhile negative. My LLMD thinks, that Borrelia isn't my problem anymore, i think so too.

Whats so curious? Every week on monday/tuesday i begin to feel BAD... on wednesday i get better.. friday/satureday/sunday are regluary my best days every week, on these days, my symptoms are at their lowest.

When i feel bad, i have really intensive symptoms of a "flu".. shaking.. its cold.. body is hurting, no appetite.. etc.

I can't find out, which bug is causing these symptoms.. thats why i hope to finde someone in here, who has also an active chronic CMV infection.. i would like to compare the symptoms..

how long has CMV to be treated?? Which medication is the best? Actually i'm taking valcyte.. actually 1/day, 1/day, 0/day, 1/day, 1/day, 0/day.. etc.. try to work up because its a hadr drug.

how long do viruses have to be treated with valcyte to see some results???

Edit: my CD8, CD4 and CD3 cells are slightly under the lower limit

thanks for input !
 
Messages
37
hey,

sry i cant explain it well (im from germany, my english isnt that professional). The LTT (Lymphocyte-Transformation-Test) is a test which detects how strong your immune system is in contact with the virus. The hight is called "stimulation index".. its a very sensitive test here.
Im only highly positive for CMV. EBV and HHV6 seem to latent infections (SI=7) (CMV SI=65)
 

Valentijn

Senior Member
Messages
15,786
Whats so curious? Every week on monday/tuesday i begin to feel BAD... on wednesday i get better.. friday/satureday/sunday are regluary my best days every week, on these days, my symptoms are at their lowest.

When i feel bad, i have really intensive symptoms of a "flu".. shaking.. its cold.. body is hurting, no appetite.. etc.

I can't find out, which bug is causing these symptoms.. thats why i hope to finde someone in here, who has also an active chronic CMV infection.. i would like to compare the symptoms..

The symptoms you're describing sound like PEM - caused by a delayed reaction to exertion. Are you very active during the weekend on your "good" days? If so, the solution might be to do less on those days.
 
Messages
36
Location
NY, USA
Well the first question you need to ask yourself, copi2k, is what behavioral patterns switch from early to late in the week. To me, this sounds like it may be stress related; as the weekend approaches, you have less stress, less symptoms? But if you do heavy exertion, such as a manual job like construction, you may be experiencing a reaction to exertion like suggested above.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Copi2k, do you spend the weekends with people around you?
I noticed that I was worse at the start of the week and worked out that this was due to people being around in the weekend. They were exhasting me and it was taking all week resting just to be able to get some strength back.
 
Messages
37
Hey,

sry i was very busy the last 2 weeks. Sometimes i have people around me at the weekend yes, sometimes i go out and drink 1 beer with them, talk, laugh, that's what suppose to keep my faith in getting well 1 day again..
But even, when i stay at home and rest all the weekend, its the same. Even when i have no stress, holidays etc, its always the same! monday/tuesday the worst, then better.

Im actually on valcyte and working up to 2x1/day.. since i'm taking the valcyte, my crashes on monday/tuesday becoming less and less.