Antiretroviral Trial

[Daffodil]

thanks a lot everyone the nausea is maybe a little better but still a problem. i think the hardest part may be over now, unless i run into bloodwork issues with the meds...then i'm in trouble.

it is frustrating because yesterday i was making plans to take a short dip in the downstairs pool next month - its been 4 yrs since i have done that - but today i have regressed again (i had to go out in the heat to get meds). so its all very very fragile.

my regular cab driver made a comment that i seemed more talkative and perky. i noticed the return of some personality for a while. this is so weird.

still a very very long way to go, though. those of you who haven't been sick this long or have less neuro involvement will have an easier path, i'm sure.

i just hope i do not plateau because there are no more meds to add!

 

[energyoverload]

that's great progress to hear!, sue. i'm very excited for you! i was reading about how AZT can cause anemia and apparently this can be quite common in HIV. at the 600mg a day dose, have you had any lowered Red blood cell counts/hemoglobin levels or have these both been fine?

After talking to my doc on the phone, I hope to be starting ARV's shortly, but I'll be taking AZT 300mg BID and Tenofovir 300mg/day, due to cost, over here in the UK, I cannot get any coverage for the cost of isentress/raltegravir... I'll get regular labs done to monitor any possible anemia, liver enzyme changes etc.

Thanks,

Jake

 

[Daffodil]

hi jake. so glad you found a doc to give you the meds in the UK! in retrospect, i wish i had started with tenofovir. it seems to help a lot.

i am sure you can get isentress free from merck. call them and ask for their patient assistance program. they have a quick, no-red tape policy for isentress because usually HIV patients need it fast.

as far as i know, my bloodwork has been normal so far with no anemia. i did notice a borderline kidney test once - i will have to double check. i have not been paying close attention to my blood results at all. i think i am too scared something will prevent me from staying on the meds and i dont want to know lol

if you have had CFS for many, many years, be very patient. it is an excrutiatingly slow process.

sue
xoxo

 

[heapsreal]

glad your getting somewhere sue.

cheers!!!

 

[Forebearance]

Likewise, I'm so glad you're getting somewhere, Sue!
Forebearance

 

[Rrrr]

sue, i'm so excited for you!!! and by extension, all of us. i made a 2nd appt with a 2nd infectious disease doctor, in case i can't get the first to give me antiretrovirals. my primary doc, who i asked last wk, said no. he is not comfortable.

so, sue, if you had to guess at the order in which to add the 3 meds, you are saying it should be... what?

 

[randalbond]

Jake, I am from the UK and didn't even dream that one could find a doctor in the UK, willing to prescribe ARVs for XMRV. I believe for such audacity this doctor stands a good chance of being stricken off the medical register, knowing how conservative and unhelpful UK medical profession is. Can't blame them, they're more restricted than US doctos.
I personally bought generic AZT and Tenofovir from India, but, like Sue had developed sickness and vomiting, so much so that I couldn't even eat, let alone take any meds. So, I had to stop but will hopefully, try and restart it at some point. As for Raltegravir, it's the most effective of all three and has the least side effects. Unfortunately, there's no generic version, so it costs a hefty sum of money. Glad that you can do all the labwork. It' s extremely important. Do keep us updated how it goes. Maybe, it'll be worth starting a separate thread. If I have any positive experience with ARVs, I certainly will. Have you tested positive for XMRV?

Sue, Merck only provides free or discounted products for US citizens (I just followed the link you provided), so Jake (or myself) won't be able to use this scheme. Shame.

 

[grant107]

How do you find an ID doctor. I thought of calling the office and asking if he treats xmrv but the office staff has probably not heard of it. It could take quite a few doctors until I find one to treat me.

 

[Rrrr]

How do you find an ID doctor. I thought of calling the office and asking if he treats xmrv but the office staff has probably not heard of it. It could take quite a few doctors until I find one to treat me.

exactly. that is why i made two appts with two diff doctors. i know others on this thread are getting antiretrovirals from other types of doctors, too, like rhemetologists (sp?).

it is going to be a crap shoot. we just have to try. or, like you said, call first. but i think we'll have more luck convincing them face to face.

i found these two doctors from word of mouth.

 

[Daffodil]

randal... i am in canada and merck said they would provide it free...and i am sure they will in the UK too. HIV patient advocates have accomplished a lot. call merck!

Rrrr...thank you i'm pretty happy myself (or as happy as one can be under the circumstances).

i think i would try Tenofovir first for a month and then add Raltegravir. Then see about AZT. I would also ask Dr. Deckoff-Jones and Dr. Mikovits for advice, of course.

Love
Sue

 

[Rrrr]

sue,

i hope this is okay to post on yr thread, and if not, just let me know and i'll take it down, but this is just a summary of what i think we know about cfs, xmrv and treating with antiretrovirals:

3 meds found to work in vitro (check on the doses, i'm not sure about them!!!!!!!!!)
AZT: 300 mg, 2x/day
Raltegravir (Isentress): 400 mg, 2x/day
Tenofovir (Viread): 300 mg, 1x/day
(all three are covered by my medicare plan, so may be covered by other medicare plans, too, and if not, try needymeds.org, or merek, the med company)

This below study by Dr. Singh states that raltegravir is the most effective against xmrv in vitro, and dr coffin and others have told me it is the one with the least side effects in vivo.
"Anti-HIV drugs inhibit emerging virus linked to prostate cancer and chronic fatigue syndrome"
http://www.aidsmap.com/en/news/7783CFCE-5022-40C8-AE08-0A99D440CAC2.asp

3 PWCs that i know of are experimenting with this these meds and getting good results
- dr jamie deckoff-jones and her daughter: http://treatingxmrv.blogspot.com/
- phoenix rising's daffodil
- phoenix rising's jimbo (only on raltegravir)

 

[Rrrr]

Rrrr...i think i would try Tenofovir first for a month and then add Raltegravir. Then see about AZT. I would also ask Dr. Deckoff-Jones and Dr. Mikovits for advice, of course.

Love
Sue

sue, can you tell us why you suggest starting with tenofovir first, then adding ralt, then azt?

 

[grant107]

Sue,
Did you notice much more improvement after adding Tenofovir and is that why you would add it first.
Jean

 

[Daffodil]

yes....now i dont know if the AZT and the RAL did a lot of the work and thats why adding Tenofovir seemed to make a big difference but the Tenofovir really did something good. Perhaps it is penetrating certain tissues better? I would start it first because i would like to see how it does on its own...maybe i wouldnt have had to add a 3rd drug.......but i they are recommending taking all 3 anyway so maybe it doesn't matter. i would really like to stop AZT but its the only thing that really gets into the central nervous system at therapeutic levels.

sue
xoxo

 

[Daffodil]

Rrrr....remember witchywoman on patientslikeme.com too

i have heard of a few others also doing well on the drugs but have not spoken to them directly.

sue

 

[Jenny]

Others on anti-retroviral drugs on this board - whiteknight, ladybugmandy, energyoverload - starting soon.

Jenny

 

[Daffodil]

another development, probably unrelated but will mention anyway...

several years ago, i had mild asthma. it hasnt acted up in a very long time and i have not been on any medication for it. however, about a week ago, i started experiencing what seemed like my old asthma symptoms - wheezing, coughing, etc. i asked my doctor to prescribe a puffer and i have been taking it but it has not made any difference at all. the cough is getting a little worse and i am getting a mild burning feeling in my lungs.

this started after tenofovir, around the time i felt more CFS improvement. i just have to wonder if my immune system is now able to react to things.

will try to find a GP. this had better not be lung cancer or sarcoidosis.....thats the last thing i need! (i have become paranoid since all this CFS stuff lol)

sue
xoxo

 

[shannah]

Hi Sue,

There's a really good new article posted yesterday at http://www.cfscentral.com/ on antiretroviral therapy and IRIS. Have no idea if it applies to you but might offer some insight as to why you seemed to get worse for a period.

 

[shannah]

Haart & iris

There's a link in Mindy's article posted above leading to this article dated December 2009.

What's New in HIV/AIDS: Treatment Immune reconstitution inflammatory syndrome (IRIS) can complicate management of patients on antiretroviral therapy.

http://www.jaapa.com/whats-new-in-h...nts-on-antiretroviral-therapy/article/158936/

Here's an excerpt:

TAKE-HOME POINTS

■ Improving immune function can be associated with an inflammatory process that poses a significant threat to patients even though their immune status is improving.

■ The onset of immune reconstitution inflammatory syndrome (IRIS) symptoms can occur as early as 1 week after the initiation of antiretroviral treatment. Yet, symptoms may also manifest as late as 1 year or more after treatment initiation.

■ IRIS is estimated to affect approximately one-quarter of patients who start antiretroviral therapy.

■ A paradoxical worsening of symptoms has been noted with other disease processes that are similar to HIV infection. Thus, although most of the information we have focuses on HIV, the implications for IRIS may be broader.

 

[randalbond]

Shannah, thank you for the link. It does make sense to me. When I tried LDN, which also modulates immune system, I had to restart four times due to side effects. First two times the headache was simply unbearable. The third time my joints got so swollen and painful that I was screaming (I have secondary Sjogren's which is an autoimmune condition causing dry eyes and mouth and swollen joints if it progresses), and no usual medication did any good. Only the fourth time I could gradually build up the dose to 4mg and feel ok for it. Now I understand what was going on - immune reconstitution inflammatory syndrome (IRIS). No wonder that I have similar problems with AZT and TEN. I had to stop them due to feeling very sick and uncontrollable vomiting. After a break I restatrted AZT alone but each day grew weaker and dizzier, till I spent all of my time in bed. I decided to stop it again and when the symptoms calm down will try AZT 300mg/day. Will see how it goes. My NK cell count is very, very low - 16UL, while the norm is 25-250, if I'm not mistaken. So, with this article, all my symptoms make sense.

Sue, do you also feel dizzy. It's not listed as one of side effects but I read Witchywoman's page and noticed that she listed dizziness as one of her recent symptoms. Also, how is your feeling sick? Are you managing? As for inflammed brain, I know exactly what you mean. As well as all other weird sensationg in my head. One of them feels like a foreign body in the eye, but only inside the brain. The feeling can be intolerable. Another one is a feeling that my brain swells.