Valcyte or not....my question

[Timaca]

Hi atoska~ It takes me about 17 weeks before I notice whether or not a medication is helping me so give it some time. You are about 12 weeks into it. See how you feel in about 6 weeks. I'm also on acyclovir (800 mg) and I felt worse for awhile too at first.

I was ill for 2 years before I was diagnosed with "probable" Lyme disease. I started on IV rocephin and noticed significant improvements (first I felt much worse--then about 16 weeks into it felt much better).

I started antivirals a number of years ago. I was on valcyte and I'm now on oxymatrine and acyclovir. I'm also on antibiotics. A lot of my story is told on the HHV-6 patient forum (look at the posts in the Antiviral Treatment section---valcyte journey, oxymatrine and acyclovir). I'm Timaca there too.

Hang in there. Thanks for the wishes for improvement.....I wish that for all of us.

Best, Timaca

 

[atoska]

Hi Timaca!
Thankyou so much for your answer! it was my first post on this forum and it was very nice to have an answer
and it also made me feel good to read that you noticed the first improvements after 17 weeks. i get very impatient some times
i looked at the hhv6 forum and read some interesting things. thankyou for that too! ill be reading your progress there too!
i luckly dont have hhv6, Dr montoya told me that i have Epstein Barr and also cocksakie B. so i think that pretty soon i will start on oxymatrine too. ill be going to california (im from spain) in september and i have an appointment to see Dr Chia.
are you feeling better on acyclovir and oxymatrine that with valcyte?
yes, i also wish improvement for all of us! hopefuly very soon
thankyou again timaca!

 

[Timaca]

Hi atoska~ I think each medication has helped me see improvements in my health. So, valcyte helped some, but did not get me well. Oxymatrine has also helped (you can read my updates on the oxymatrine thread on the HHV-6 forum). Have a good appointment with Dr. Chia. I see both he and Dr. Montoya. In case you haven't seen this here is a link to the Stanford website: http://chronicfatigue.stanford.edu/ and here is Dr. Chia's thoughts: http://chronicfatigue.stanford.edu/infections/entero-experts.html Hang in there, be patient and keep us posted on how you feel.

Best, Timaca

 

[atoska]

Thankyou for the links! Yes, Lindsey from Dr Montoya sent me the link some moths ago and i read it all Dr Montoya is such a nice person, i wish all doctors were like him.
I will definetly keep you all posted. Now that i have discovered posting in the forum i think i will be here more often!
Hope we all have good news in our future posts!
Thankyou Timaca!
Best, Atoska

 

[soxfan]

Timaca- I am interested in the Oxymatrine...what exactly is it and what is it used for. I just started Valcyte a week ago (450mg) to start and probably need to do some other treatments as well. I am taking some transfer factors also. I just had another panel of blood work done just to be sure we are treating properly. Thanks for all your information and links...it is very helpful.

Kim

 

[Timaca]

Oxymatrine is a Chinese herb often used to treat hepatitis. http://www.ncbi.nlm.nih.gov/pubmed/21277330 Dr. Chia found it useful in treating his son who had CFS resulting from a Coxsackie B infection. He developed Equilibrant, which has oxymatrine in it: http://chronicfatigue.stanford.edu/infections/entero-treatment.html You can also buy oxymatrine online (White Tiger Brand). But, I would not use it without first getting tested for enteroviruses (see Stanford website on how to do that) and then working with your doctor on when to add oxymatrine in. Valcyte is a heavy duty drug, so I'd stick with that first and see how you do.

Best, Timaca

 

[soxfan]

Thank you Timaca..I will talk with my doctor about being tested. I am seriously considering stopping the Valcyte. I just had a repeat EBV panel done and my only abnormal readings were the EBNA and the EBV VCA IgG which basically mean it is a past infection not a reactivation. I have no idea about the HHV6 level as I really have nothing to compare it with.
I was just prescribed Trental to help calm down my immune system which I will probably give a try. This is all so confusing.....