Antiretroviral Trial

[Daffodil]

{{{{omerbasket}}}}}

 

[Daffodil]

interesting because MIP1a, MIP1b and IL-8 are all elevated in HIV dementia and are very elevated in me, too. if i remember right, i read that when using AZT for HIV dementia, you have to use 1000 - 2000 mg/day...so thats out of the question for me.

when i was using 300 BID, i was experiencing transient improvements.

i wish i had another option. i talked to a researcher about GcMAF and he says he worries that that could spread the infection more....i dont get it.

my doctor has told me he will never prescribe ampligen.

i wish i had some answers about whats going on in my brain. even if the infection is all over my brain, the HIV drugs should be making more of an impact than this, shouldnt they?

 

[alice1]

Sue would you consider calling Dr Klimas and just talking to her about what you're going through.She may know of some trials going on or maybe suggest a combo of meds that no one has thought of before.
xox
al

 

[Daffodil]

alice! i think about you often but have been too sick to call. how are you? is klimas going to prescribe ARV's soon?

klimas wont talk to me if i call her.. i would have to be a patient. perhaps i should go to fla to see her....but i dont have the energy. i also wonder if i might have to get to WPI when that opens...dont know how i would manage that though.

thanks for the suggestions, hon. you are very kind.

{{{alice}}}} happy holidays.

 

[leaves]

I will go visit Klimsa in three weeks. Last time I spoke to her she didnt have any concrete plans for ARV trials. I do not think she will prescribe them off label.
Sue did you read the article that I posted on the HIV research thread? It seems that a lot of the cognitive problems in HIV patients are caused not by viral load in the brain but by (inflammation caused by the) viral reservoir in the brain. In particular, even medicines that cross the BBB do not affect these cognitive problems.
This suggests that ARV may not be the answer to our neuroinflammation. This is the only thing holding me back from taking ARV.

Heck, I post a thread on the article, Iwould really like to hear your opinions.

 

[Daffodil]

getting worse. thinking of trying the higher azt dose again. docs are perplexed as to why it induced cardiac pain and tachycardia. i am now as sick as i have ever been.

some are improving significantly on the ARV's, even after long term disease.

i suspect my brain / CNS might have a very large XMRV reservoir for whatever reason. still, shouldnt be this sick after 8 1/2 months of ARV's. dont know whats going on.

one researcher suggests i go to a major university hospital and find out why i have high IL-8, MIP1a, and MIP1b and brain "swelling". wtf...

i actually feel like my body is getting weaker and weaker now and that maybe its just too late.

i would like to get bloodwork at VIP again but i just got a $1600 bill for the last time!..so i gotta wait

happy holidays
sue

 

[heapsreal]

have u ordered cycloferon yet? Sue

 

[Daffodil]

hi heap...no but i will!

so i have been back on the higher AZT dose now for a couple of days (300 BID) and notice improvement already. just my luck that the most toxic drug of all is the only one that helps!

i think i might be taking RAL and TDF for nothing.

so i guess either have a variant of the virus (in addition to XMRV?) and RAL and TDF dont work well on the variant.....OR.....brain penetration is very important for some people, probably people with severe brain fog / swelling like me.

OR....maybe i have another retrovirus altogether that hasn't been discovered! and AZT is a wide-spectrum antiretroviral so it would work for a while on it.

either way...not great news.

 

[heapsreal]

good to hear some improvement sue, merry xmas!

Cheers!!!

 

[undcvr]

Hey Sue I am just coming ax ur thread now and am sorry to hear about all that u r going thru. 1 thing comes up tho, if u and ur doc r using the retroviral hypothesis as to what is infecting you, y aren't u taking the more safer ARVs that HIV+ patients are taking ??? The whole point as to why AZT fell out of favor is that these new drugs are so much less toxic and more effective than AZT. And if it really is a RV then this whole class of HAART drugs shud work on all RVs.

Your titres for CMV, EBV and HHV6 are all ok ?
Did you test for enteroviruses too ?

 

[Daffodil]

hi undcvr...i have been tested for everything but i did not have an actual biopsy for entervirus - just antibody testing. everything was normal.

i am using AZT because RAL and TDF alone didn't working for me. AZT, TDF, and RAL are the only 3 HIV drugs that significantly inhibit XMRV.

today is a better day again.

merry xmas all. thanks so much for the support

sue
xox

 

[undcvr]

there are newer ones, truvada (a combination) and Isentress comes to mind. Atripla is new too. So u actually tested positive for XMRV ? So hard to find a commercial test for that here in NYC.

 

[Sushi]

there are newer ones, truvada (a combination) and Isentress comes to mind. Atripla is new too. So u actually tested positive for XMRV ? So hard to find a commercial test for that here in NYC.

Hi undcvr,

The only commercial test in the US is at VIPdx. Many of us here have had that test and are positive. They send a kit with a pre-paid FedEx mailer and you just have to get the blood drawn and take it to FedEx--and wait! They offer both culture and serology. Some of us have tested positive on one, some on the other, and some on both.

The new combo drugs have also been tested against XMRV--so far we just have the trio. XMRV behaves differently from HIV and the same drugs don't usually work.

Best wishes,
Sushi

 

[illsince1977]

Jamie has said the 3 drugs are synergystic, so RAL and Ten may not "be for nothing." We just don't know.

I know it's difficult not to constantly second guess ourselves, and I have thought it may indeed be one of our symptoms. I do it constantly. At the least, it comes with the territory of being forced into always having to be in the experimental treatment realm, but maybe it would be good for your mental health if you would give yourself a break from that, if only for a few minutes or an hour here or there. I don't want you to torture yourself with doubts. The illness tortures you enough for many lifetimes.

I am happy you feel a bit better and always wish for the best for you.

 

[Daffodil]

undcvr.... RAL is Isentress. The other HIV drugs do not work on XMRV.

illsince...you are right. i am constantly second guessing and ruminating since i got sick. and with the severe fog, i am unsure of any decision i make.

today looks like another bad day with head swollen. clearly, the reservoirs are going to be the problem for many of us. maybe we need rituximab followed by ARV's or something.

ARV's dont help the HTLV-1 reservoirs either. we need something else.

 

[Merry]

Hi, Sue.

I've never posted on your thread, but I wanted to let you know that I often read it and think about you. I worry - and I wish the energy of my worrying could help you!

Here's hoping 2011 is a better one for you. What an adventure our lives are.

Merry

 

[Daffodil]

Thanks, Merry. Always appreciate the support. I wish the same for you and all of us in 2011...at least there will be a clinical trial then.

I was reading how FeLV replicates in bone marrow and lymph tissue in head and neck...sounds exactly like XMRV. There was a lone report of one cat surviving long-term on combination ARV's.....i think thats the only cat that has ever been on combination ARV's for FeLV.

Love
Sue

 

[undcvr]

I guess i have alot more reading up to do now that I have read your post and found out all this stuff about XMRV. I know that Heaps is a big fan of Cycloferon. But there is a whole gamut of interferon inducer drugs from Russia too. Eg Arbidol, Thymogen ... just thot I wud let u know.
I am a big fan of Proboost Thymic protein and if you are in the US maybe it won't be so expensive for it. Its like about $40 for 30 packets.

One of the strangest symptoms that I know that tells me that I am not well is that every morning when I wake up, without fail, I will sneeze once or twice.

 

[Daffodil]

have any of you been reading about FeLV? the more i read about it, the more it seems EXACTLY like XMRV. and i dont see any good news about any treatment working, either. they mentioned something about lymphocyte infusions helping, which they did for CFS too. some treatments can prolong life but it looks like the cat always dies of it. it also looks like early intervention is very important. combination ARV's haven't really been tried, though.

im really starting to think i am doing all this for nothing...that i am doomed and just don't want to face it.

i am in agony. 24/7. all i do is imagine what it would be like if only i was well...if only i had done this different or that different...what i could be doing....where i would be.... this cannot be happening.

 

[acer2000]

ARV's dont help the HTLV-1 reservoirs either. we need something else.

From what I understand, HTLV-1 caused ATLL can be treated with AZT, alpha interferon, and arsenic trioxide.

My Dr. says he has seen it put patients with cancer from HTLV into complete remission. Only a small percentage of HTLV carriers ever get cancer and it only causes other illness symptoms in some other subset, but thats another issue. I have no idea whether those drugs have any effect on the non cancer symptoms that can be caused by HTLV. Perhaps someone else can chime in. There does appear to be a decent number of papers on this, but I haven't had a chance to look into them. And of course arsenic is toxic in and of itself.

With respect to FeLV, I wouldn't worry to much that there isn't information of ARVs and cats. With all due respect to cats, they aren't people, and I doubt a significant amount of money goes into research on how to treat cats with FeLV. I take this lack of info to mean that it just hasn't been studied, not that it doesn't work.