Daffodil
Senior Member
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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!
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Antiretroviral Trial
- Thread starter Daffodil
- Start date
Daffodil
Senior Member
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- 5,875
for XMRV/MLV
glenp
"and this too shall pass"
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- Vancouver Canada suburbs
I am so sorry that it did not work for you Sue.
glen
glen
Daffodil
Senior Member
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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
-s
Charles555nc
Senior Member
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- 572
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.
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.
leaves
Senior Member
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weird I am xmrv + and have low il -8
Daffodil
Senior Member
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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!
its nuts!
heapsreal
iherb 10% discount code OPA989,
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sue, its a game of ups and downs, hopefully 2 steps forward and 1 back.
cheers!!!
cheers!!!
C
Cloud
Guest
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
Senior Member
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- 1,193
Yes! I just posted them in my thread on cytokines in the "symptoms" section....
Daffodil
Senior Member
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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...
really worried that i needed AZT...
illsince1977
A shadow of my former self
- Messages
- 356
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
Senior Member
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- 442
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!!!!!
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
Senior Member
- Messages
- 5,875
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
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
Senior Member
- Messages
- 189
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.
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.