• Phoenix Rising needs funds to operate: please consider donating to support PR

Valcyte, Valtrex ? Newbie from Ukraine. Please help me with the treatment

Messages
30
Likes
18
Status report ) :
I've started month+ treatment plan from a doc:
Valtrex all this time (little bit on a lower side - 500mg*3 a day)
10 days on Erbisol IM (immunomodulating)
+ 5 times Neovir IM (interferon inducer) every other day, this one is real pain in the ass )
Then immunoglobulin Herpimun 6 IM 5 times every other day (marketed as selective against hhv6)
Then Glutoxim IM for 10 days (difficult to say what this for, drug developed as a complement drug for anti tuberculosis treatment)
Then again Neovir 5 times every other day

I am still puzzled about need I specific Hhv6 treatment (Valcyte) or not, I cannot even say elevated my IgG levels or not because BioRad system that I've been tested by gives only positive/negative results, with numbers in single digit numbers. Looks like I need to do it in other lab.
So far I haven't experienced any Herx alike reaction from Valtrex, nor any other noticible results from treatment so far.
 
Messages
6,882
Likes
15,010
Location
Second star to the right ...
I have swollen lymph nodes in the neck and light fever at around 37C that sometimes subsides, sometimes goes forward.
So my current status is no prominent pain or fatique, light fever, swollen lymph nodes, POTS.
Some GI problems that could be attributed as IBS.
I have IgG EBV, positive PCR for HV6 in saliva (my doctor at a time said it isnt a problem), No CMV.
I also have low WBC count around 3.5 with low neutrophilies and somewhat distorted T cells immunology profile.
Much of what you've cited above might also be lymphoma, either Non-Hodgkins or Hodgkins, although this is kind of a reach. But the swollen lymph glands, the elevated temp (do you get sweats with that, especially at night, as well?), the tiredness that doesn't quite reach the levels of fatigue at least so far, the GI problems, the presence of EBV tracers, pretty much everything but the low WBC count, can be so many things, and this is one that you probably want to rule out soonest.


How difficult or expensive would it be to ask your Dr to run a few tests, just to rule that out before moving forward with other possibilities? I have a sense of how very rough things are in your country right now, I know that nothing is going to be easy, and I deeply wish there was more we could do to smooth the way for you, or help with more than words.

But right now, that's what we've got. Everyone here is generous, and we all come to this illness with different sensibilities, different points of view, different experiences. Somewhere here there's a set of circumstances, experiences, and knowledge that will be what you need to know.

Please keep posting and letting us know how things are with you, and how you're doing, yes? :hug::hug::hug:

EDIT: LIKE AN IDIOT, I NEGLECTED TO CHECK THE DATE ON THE FIRST POST ON THIS THREAD. I'M ONLY LEAVING THIS LAME COMMENT UP ON THE POSSIBILITY THAT IT MIGHT HELP SOMEONE ELSE DOWN THE ROAD.

@Andey, its been a long long time sine we heard how you're doing, and a lot has happened since then that affects you geographically and healthwise. If you can, could you give a holler? I just found this thread thanks to @Hipsman posting on it and bumping it up, and when I think of everything that's swirling around you, I just have the irrational need to know that you're OK. It's good to know that @Hipsman is OK. The world is a strange strange place right now.
 
Last edited:

Hipsman

Senior Member
Messages
115
Likes
166
Location
Ukraine
@YippeeKi YOW !! I got curious and did some research on him :). He's last login to phoenix was in may 2017, but I saw Andey's posts on russian borreliosis forum (july 2017 last login), looks like he treated with something and stopped receiving positive Lyme test results and may be better after that, but still may be dealing with herpes viruses. Judging from his positive tone on borreliosis forum from 2017 posts he probably is doing good since he didn't login for more than 2 years :) Thou he almost didn't do updates on how he was doing.
 
Messages
6,882
Likes
15,010
Location
Second star to the right ...
@Hipsman
You are sooooo kind and thoughtful to get back to me, and the thread generally, with news that all is probably well with Andey. For some reason, I was really concerned and had an almost irrational need to know that he was OK, and that you are, too.


Like you, after I realized my error in not noting how old the thread and posts were, I checked his profile and saw that he'd pretty much vanished from PR in 2017, but I couldnt have figured out what to do next, as you so aptly did.

Thank you again, @Hipsman, and be as well as possible, and safe .... I'll keep an eye open for you in the threads here :thumbsup::thumbsup: :hug: !!!!