My AZT + RAL Trial

[cfs since 1998]

i think raltegravir, while helping my CFS, induced auto-immunity

I've read some of the research on this, and I got the impression that this is something that happens over an extended period of time and not something that happens instantly or in a couple of days. You could always get those tests, I forget what they are called, that are used to diagnose Lupus etc., but I don't think this is what happened.

 

[alice1]

hi sue,
when is your mri and ask the doc for the results asap.
i'm thinking about you and hope you get some answers.
hang in...
oxox
al

 

[redo]

(...) We touched on this on chat but it seems like when CFS patients start antivirals, they have a flare-up of the virus they're supposed to be inhibiting. I guess the same thing can happen with the antiretrovirals and maybe XMRV causes tachycardia. If that is the case, the drugs might actually help the tachycardia over time, even though it seemed like they caused it. (...)

That's a very good point!

I have tachycardia myself, and I suspect that it's the XMRV that is causing it. Getting a flare up when beginning treatment is not that uncommon. And I - like you - think the chances of getting rid of it later in the course is good.

 

[Hope123]

I've read some of the research on this, and I got the impression that this is something that happens over an extended period of time and not something that happens instantly or in a couple of days. You could always get those tests, I forget what they are called, that are used to diagnose Lupus etc., but I don't think this is what happened.

I agree with this. The other piece is that you can get labs for lupus and some of them might even be somewhat positive (like ANA) but this might be because of our overactive immune systems rather than true lupus. Lupus diagnosis needs to be made in conjunction with a host of other clinical symptoms and although you can get irregular heart beat with it, you might have other symptoms before and with it.

(There was a study a while back that showed 15% of CFS patients are ANA positive but the significance of this is not yet clear.)

 

[cfs since 1998]

i have had it. all my CFS symptoms are coming back..i can feel the fog building up and the back of my neck swelling up. its awful.

and my heart is still tachycardic!

You have a point there...if staying off the drugs doesn't help the tachycardia, what difference does it make if you stay on them anyway. Hopefully your doctor will understand this reasoning.

 

[natasa778]

Sue, that really does sound like Immune Reconstitution Syndrome, autoimmunity from relt a bit unlikely as would take longer to develop, and also reaction to drugs probably unlikely as they should have cleared from your system.

Not sure if this would be of any help to take to your doc (in addition to previous one I posted stating that "antibody-labeled scintigraphy is the choice exploration")

Immunosuppressive and antiviral treatment of inflammatory cardiomyopathy.

Inflammatory cardiomyopathy (ICMP) is characterized by myocarditis associated with cardiac dysfunction. Clinical presentation may include acute heart failure and cardiogenic shock, chronic heart failure, ventricular tachyarrhythmias or may mimic an acute coronary syndrome. Inspite of the recent improvements in non-invasive diagnostic techniques, such as cardiac magnetic resonance, the diagnostic gold standard is still the endomyocardial biopsy. In the last years, classical histological Dallas criteria have been significantly improved by the introduction of immunohistochemical and molecular biology techniques. Recent findings using these new diagnostic tests resulted in increased interest in ICMP and a better understanding of its pathophysiology, the recognition in overlap of virus-mediated damage, inflammation, and autoimmune dysregulation. Moreover, there is growing evidence that the treatment of these patients with specific strategies may be effective only if based on their immunological and virological characterization. Several studies suggest that patients with autoimmune ICMP can benefit from immunosuppressive treatment and immunoadsorption, as well as high dose immunoglobulins, showing a significant improvement of left ventricular function and heart failure symptoms. On the other hand, immunosuppressive treatment can be deleterious for ICMP patients with evidence of viral persistence, while antiviral treatments have been proven effective in this subgroup. The present review summarizes the recent advances in the diagnosis and risk stratification of ICMP, and reviews patents and treatment options for these patients.
Recent Pat Cardiovasc Drug Discov. 2009 Jun;4(2):88-97. Santangeli P, Pieroni M. Cardiovascular Department, Catholic University, Largo A. Gemelli 8, Rome, Italy. pasquale.santangeli@libero.it

 

[Rrrr]

ladybug,

i have nothing profound to add, only that i'm thinking of you and feel grateful that you found something that DOES help. many of us (you included, i'm sure) have tried 100000 things and none of them seemed to help at all. and many times we stay on these treatments or supplements for months or years, hoping they help. you found something that helped within a few days of trying it. that is amazing.

of course, the heart issues are highly distressing.

thinking of you...

rrrr

 

[Rrrr]

yes, keep us posted, sue!!!!

 

[Rrrr]

sue,

did you see this? this doctor is taking antiretrovirals for xmrv

http://treatingxmrv.blogspot.com/2010/05/personal-report.html

 

[John Leslie]

Hello, I am new on the site and I was wondering where you had your XMRV test done. Thanks

 

[Rrrr]

hi again, sue.

i'm wondering, can you remind us, are you one of the hyper sensitive CFS folks? do you tend to react really badly to taking most meds (as i do)? and if so, did you experience that with AZT or raltegravir? i don't recall reading that you reacted badly on yr thread, just the "normal" bad side-effect reactions, right (except for the heart issues)? but i wonder if you are lucky in that you are not one of the hyper sensitive folks? i can't take most meds due to how badly i react to all of them.

rrrr

 

[dannybex]

Hi Sue...restless legs

Hi Sue,

It's my understanding that restless leg syndrome is more often a circulation problem, and might be helped with mixed vitamin E or coq10. It's also connected to low iron levels, but perhaps you'd want to stay away from iron...not sure of course what your levels are.

I've had it in the past, off and on, and vitamin E, along with coQ10 works every time. It might take a few days before you notice a benefit.

Anyway, just my two cents. I'm not a doctor, so of course I would suggest running this by your doc first.

Best to you!

Dan

 

[Robin]

forgot to mention something.....i am experiencing restless leg syndrome, which i have never had before. i think it started around the same time the tachycardia did. it has gotten worse so that i have not been able to sleep at all the past 5 nights, even with ativan. i can usually sleep a few hours after 7 am..it seems to settle down at that time.

Sue, I had restless legs for a while when my ferritin was low from iron deficiency anemia. That can also cause tachycardia. Have you been checked recently? I'm not sure how old you are but anemia is really common among menstruating women. It would be worth it because the treatment is so easy and effective.

Of course those things can have a lot of different causes so it's worth it just to go see someone. They might be unrelated to the drugs you were on.

Restless legs is one of those things that sounds so innocuous but it's really horrible! Ugh, I hope you get some relief soon.

 

[Hysterical Woman]

forgot to mention something.....i am experiencing restless leg syndrome, which i have never had before. i think it started around the same time the tachycardia did. it has gotten worse so that i have not been able to sleep at all the past 5 nights, even with ativan. i can usually sleep a few hours after 7 am..it seems to settle down at that time.

because restless legs is usually neurological in origin (i think), maybe both it and the cardiac issues are conencted and neurological.

i am thinking that perhaps i can locate a doctor with a lot of experience treating with raltegravir and see if he can speculate better.love


love
siue

Hi Sue,

Sorry about all the symptoms!!! You have really had some difficult problems. Magnesium can sometimes help with RLS symptoms and can also sometimes help with the tachycardia - depending on what the problem is. Just keep in mind that there are some contraindications for taking magnesium - do not take it unless recommended by a doctor if you have:

Kidney failure
Myasthenia gravis
Excessively slow heart rate
Bowel Obstruction

Please keep us updated on how you are doing.

Take care,

Hysterical

 

[kurt]

forgot to mention something.....i am experiencing restless leg syndrome, which i have never had before. i think it started around the same time the tachycardia did. it has gotten worse so that i have not been able to sleep at all the past 5 nights, even with ativan. i can usually sleep a few hours after 7 am..it seems to settle down at that time.
because restless legs is usually neurological in origin (i think), maybe both it and the cardiac issues are conencted and neurological.
i am thinking that perhaps i can locate a doctor with a lot of experience treating with raltegravir and see if he can speculate better.
love
siue

RLS can be caused by anemia and anemia is a known side-effect of AZT. Some doctors treat this by adding procrit.

My oldest daughter had RLS as a teenager and magnesium sometimes helped her sleep. Her RLS later resolved when she went on the Feingold diet for an unrelated issue.

The combination of tachycardia and RLS reminds me of what people go through treating Lyme, this sounds a lot like a neurotoxin detox crisis. In the Lyme world the answer to overwhelming detox is usually to lower the antibiotic dosages until you can tolerate the detox, and not try to raise doses again until you are stabilized. Some people add 'toxin binders' to help get through the tougher detox.

 

[Navid]

RLS can be caused by anemia and anemia is a known side-effect of AZT. Some doctors treat this by adding procrit.

My oldest daughter had RLS as a teenager and magnesium sometimes helped her sleep. Her RLS later resolved when she went on the Feingold diet for an unrelated issue.

The combination of tachycardia and RLS reminds me of what people go through treating Lyme, this sounds a lot like a neurotoxin detox crisis. In the Lyme world the answer to overwhelming detox is usually to lower the antibiotic dosages until you can tolerate the detox, and not try to raise doses again until you are stabilized. Some people add 'toxin binders' to help get through the tougher detox.

hmmm interesting...could the anemia come on that quickly?

also in regards to lyme treatment approach....is it possible to reduce ARV dosage w/out creating even more probs....i.e. resistance to drugs. i know in lyme world some docs still don't like the titrated approach to abx because of the chance of drug resistance....while others think it's fine.

wonder what hiv docs say abt titrating arv's...and handling immune activation responses.....(what i think they call herx's in lymeland)

 

[Kati]

Hi Sue, here is a little something that I found that you may be interested to hear :

http://www.medscape.com/viewarticle/720852 Safety, Tolerability, and Efficacy of Raltegravir: The Latest Data
It's a 4 minutes video about the latest on the drug- aparently the most tolerated antiretroviral around .

 

[Cloud]

Anemia will indeed cause an increased heart attempting to get more oxygen to the tissues. So the RLS and Tachycardia may very well be connected. But, as you know there are several other suspected causes of RLS. I had RLS for a couple years and it stopped immediately when I stopped taking the Benedryl I had been taking for several years for sleep.

http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm#154003237

 

[omerbasket]

It's also possible that you'll start Raltegravir and the heart rate would not increase again, so you might tell your doctor that you'd like to try it again.

 

[citybug]

In the interviews they mention a synergystic effect of taking two antiretrovirals. I couldn't find numbers in the study about that. How did you figure your dose?


"Our study showed that these drugs inhibited XMRV at lower concentrations when two of them were used together, suggesting that possible highly potent 'cocktail' therapies might inhibit the virus from replicating and spreading," said Schinazi. "This combination of therapies might also have the added benefit of delaying or even preventing the virus from mutating into forms that are drug-resistant." Singh and Schinazi are currently investigating the development of viral resistance to raltegravir and other active drugs.

from plosone
Comparison of RT inhibitors zidovudine (AZT), lamivudine (3TC), didanosine (ddI), stavudine (d4T), abacavir (ABC), tenofovir (TDF), and phosphonic acid derivative foscarnet, showed only AZT and TDF to be effective at blocking XMRV replication at similar concentrations to those that inhibited HIV-1. As shown in Figure 5, the susceptibility of XMRV to AZT (0.045 0.007 M) was similar to HIV-1 (0.03 0.014 M). In the case of 3TC, XMRV was about 10-fold more resistant to 3TC (36.9 5.2 M) in comparison to HIV-1(3.4 1.4 M). This was also true for ddI (110 62.4 M), d4T (9.0 4.2 M), and ABC (14.4 0.45 M). The IC50 of TDF for XMRV was 3.9-fold higher than that of HIV-1 (1.48 1.05 M versus 0.38 0.13 M, respectively) and foscarnet failed to inhibit XMRV infection even at a concentration of 250 M. HIV-1 integrase inhibitor, raltegravir, was
able to inhibit XMRV at nanomolar concentrations (0.82 0.07 nM), with XMRV being 2.5-fold more susceptible in comparison to HIV-1 (2.25 0.21 nM). Overall, these results suggest that AZT, TDF, and raltegravir can effectively inhibit XMRV infection at concentrations that are similar to those needed to inhibit HIV-1 infection, whereas substantially higher doses of 3TC, ddI, d4T, and ABC are required to inhibit XMRV infection.