Antiretroviral Trial

[Daffodil]

oops forgot to mention ..dont let my trial discourage you..i have not had a positive XMRV/MLV test. i think this is very important!

 

[jen jen]

Are you being tested for XMRV or is it something else?

I'm new on here and am thinking of being tested, so i'm curious about anti-virals. I've been ill for 22 years and have never tried anti-virals.

Thanks

 

[Daffodil]

for XMRV/MLV

 

[glenp]

I am so sorry that it did not work for you Sue.

glen

 

[Daffodil]

thanks glen. i have stopped azt due to chest pain. it actually started after i began raltegravir but i cant find any link between raltegravir and chest pain.
-s

 

[Fejal]

Easy enough to raise glutamine. Take 500 mg -1g vitamin C 3x/day to bowel tolerance (no diarrhea). Standardized milk thistle q8h also also.

 

[Fejal]

Stray cat...wonderful. 85% of cats are infected with Bartonella. I really think this causes CFS.

 

[Charles555nc]

I was bitten by a tick that most likely came from a stray cat (high risk of the stray cat having bartonella nd/or Feline HIV). Ive tried alot bartonella meds with no success. I think more likely it is mutated form of XMRV, FeLV/FIV, or another retrovirus.

Daffodil you should try the zinc glucanate and the amino acids, they seem to causing quite a down turn in symptoms for me currently, especially after I uped the lysine.

 

[jen jen]

Hi
Is this the same test? My doctor (dr andy wright) has already sent some bloods to america (WPI). He told me it would cost between 300-400 for the test does it test for both? I might appear stupid but what is a MLV. This is all new to me.

regards

 

[Jenny]

Easy enough to raise glutamine. Take 500 mg -1g vitamin C 3x/day to bowel tolerance (no diarrhea). Standardized milk thistle q8h also also.

What is the evidence for this, Fejal?

Jenny

 

[leaves]

weird I am xmrv + and have low il -8

 

[Daffodil]

i think its best to check this thread every 3 months or so....things are fluctuating so much with me. the last 3 days have been better and now i feel as if the meds could be working.

its nuts!

 

[heapsreal]

sue, its a game of ups and downs, hopefully 2 steps forward and 1 back.

cheers!!!

 

[Cloud]

weird I am xmrv + and have low il -8

That is quite curious. MY IL6 was considerable higher than the IL8,.....both were very high. May I ask your other Cytokine and immune test results?

 

[leaves]

Yes! I just posted them in my thread on cytokines in the "symptoms" section....

 

[Daffodil]

another good day.....this is nice!...can feel a little bit of my past personality returning..just a little.

really worried that i needed AZT...

 

[illsince1977]

Sue-Oct. 16 you reported you were back to square 1 and were sure HIV drugs had stopped working. Oct. 17, stopped AZT. Oct. 20, things have been better last 3 days (meaning Oct. 18,19, 20). Oct. 21 you experience the "I'm coming back, World!" feeling. I hope so much there is cause and effect here with stopping AZT and that the next week or 2 bring more positive changes. Please keep us posted. I for one am really counting on you to and hope so much you continue on an upward trend. I often find my body registers changes in 3 day intervals. It's weird, but perhaps not uncommon with this illness.

 

[TheMoonIsBlue]

Daffodil,
Are you back on the AZT, or off it now? I think from reading your posts it sounds like you are off it now, and you are feeling better. I do wonder if a lot of people are not going to be able to tolerate AZT, and if it is part of a cocktail of drugs, it is difficult to know which med is causing what side effects. Is your heart doing better now?

I think it would also be beneficial to track how your good days and bad days correlate with your hormones/menstrual cycle. Sounds like hormones may be a big player with XMRV/MLV's (and herpes viruses too?). Hormones definitely impact how medications work, I know this first hand and from reading posts from lots of women online.

There have been medications in the past that seemed to work totally different or not at all during my pre-menstrual or menstrual cycle.

Hoping for the best!!!!!

 

[Daffodil]

thanks guys. i know this thread is very confusing. sometimes i am so sick i cannot take it. i am back to square 1 and other times i KNOW i am improving more and more. it is just bizarre. when i am sick, depression takes over and i cannot imagine being better. the illness becomes all-encompassing.

i have been off the AZT now for a week or so and my chest pain is totally gone. i would feel better if i were on 3 drugs instead of 2, because of possible resistance developing.

i am also worried that, since i have not tested positive for XMRV yet, i might have another strain....and AZT is the only drug that acts on all retroviruses. however, i heard that all the related MLV's will have the same treatment...so maybe raltegravir and tenofovir will work on those too.

a couple of days have been so good that i feel like i could go back to p/t work early next year....but most days are still very difficult. just hope the worse is over.

sue
xoxo

 

[FancyMyBlood]

Daffodil, thanks for keeping this log!

Maybe you already answered this question, but why did you make the decission of taking ARVs while you haven't even been tested for XMRV? I'm not trying to condemn you, after all it's your personal life/decision, but isn't it a bit akward to using start these kind of heavy drugs while you don't even know you have a retrovirus?

I feel your pain about the "bad" days, it's like everything is black and you'll never get any better. HOPE is the only thing that gets me trough those days.