Starting to see moderate success on Valcyte against CMV

[copi2k]

Hello,

well i have a short little success Story.. some of you know that i've been sick since 4 years. At first, i was diagnosed with Lyme-disease with Co-infections (Bartonella, Chlam. pneu., Mycoplasma pneu. and eventually Babesia)
3 1/2 years I took several Antibiotics & Antimalarials to fight the infections. Last year i stuck. I was in Berlin Germany to make some new Lab tests for infections. The lab tests showed a high activity of cytomegalievirus (CMV). I started with an Stimulationindex of 65 (it describes the hight of the titers).
Last week i send my blood again to Berlin to have a look what happend after 3 Months of Valcyte.. My titers fell to an Stimulationindex of 30.
Overall i'm feeling better too.. when i'm on valcyte (2x1 daily) .. i feel that the drug is rippin me.. it has tough side effects.. when i decrease my dosage or take a break of 2 days.. i feel SO MUCH better..

I will continue with the Valcyte protocol until summer and hope the titers are gone then.
Maybe.. there will be some remission.. i hope so.

 

[Ema]

Congrats on your success! I am thinking about Valcyte so it is always nice to hear!

Please let me know if you would like to rephrase the thread title to reflect that better...right now it sounds like you had no success and I am glad to read further that is not the case.

 

[copi2k]

Thanks, i know what you mean. If you want to, you can rephrase it. For me, it is a "little" success because i still have to go on with valcyte to push the titers more downwards. so.. like many of you say.. you need to stay on valcyte for about 6-8 months to get success.

i will talk to my doc soon, she said that if the titer will drop in a low area, she will switch me on valtrex to make sure that the virus wont reactivate while my immune system is still a little bit low because of the 6 months of valcyte.

valcyte is really a "drug from hell"... i feel it in every muscle.. in every bone while i'm taking it. some side effects are similar to herx-like feelings..

1 month ago i registered in a fitnessgym.. im going there 2 times a week.. sometimes i have so much energy.. that im so hungry for/to (ab)use it, that i can barely move next day because of muscle hangover

In summer i will make another lab tests to check some other viruses and bacterial infections again..

i will keep you informed

ps: sry for ma english, im from germany

 

[heapsreal]

im scared as hell to stop valcyte but maybe i should as its been 12 months, maybe will feel alot better once off?? Although there has been some stories of longer lasting benefits when one is on valcyte longer then 6 months as in original valcyte studies??

 

[copi2k]

it is on your own to decide it, do some lab tests and see how high your titers are, what your body is telling you etc. you dont have to cut off straightly.. you can try to reduce the drug more and more to get your body used to the new situation

 

[heapsreal]

it is on your own to decide it, do some lab tests and see how high your titers are, what your body is telling you etc. you dont have to cut off straightly.. you can try to reduce the drug more and more to get your body used to the new situation

yes have gone down to 1 tab. also on famvir which i would stay on. cant get titres tested in australia but cd t cells still activated high like an infection but much lower then in past tests?

 

[Sushi]

copi2k

Hi,

Glad to hear that you had some success. I think Ema means that in English when you say "little success" it means that you there was almost no success--in other words, that it did not work.

Let us know if you would like to change the title of the thread to something like "moderate success on Valcyte against cmv."

Sushi

 

[Ema]

I'm so sorry...I totally did not mean for this to turn into an English lesson! I am continually amazed and impressed by all the multilingual members on PR. I cannot even imagine trying to learn about this horrible disease in another language. You all have my utmost respect.

But yes, Sushi is right...even though little and small are synonyms, in context they mean very different things. Little means basically "no success" whereas small means "some success".

Either way, I wish you "great success".

Ema

 

[SOC]

im scared as hell to stop valcyte but maybe i should as its been 12 months, maybe will feel alot better once off?? Although there has been some stories of longer lasting benefits when one is on valcyte longer then 6 months as in original valcyte studies??

Dr Lerner moves Valcyte patients to long-term Valtrex after he feels the HHV-6/CMV is not active. Maybe you've had enough Valcyte and could try switching to Valtrex...?

 

[copi2k]

hehe no problem, you learn something new every day so please switch the title to something like "moderate success"

 

[Ruthie24]

I'm so happy to see that you are having success at all on Valcyte whether it's a little or a moderate amount. If you can go to the gym and are eager for it some days....that sounds good to me!

Hope your progress continues!