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My AZT + RAL Trial

Discussion in 'XMRV Testing, Treatment and Transmission' started by ladybugmandy, Mar 25, 2010.

  1. cfs since 1998

    cfs since 1998 *****

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    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.
     
  2. alice1

    alice1 Senior Member

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    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
     
  3. redo

    redo Senior Member

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    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.
     
  4. Hope123

    Hope123 Senior Member

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    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.)
     
  5. cfs since 1998

    cfs since 1998 *****

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    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.
     
  6. natasa778

    natasa778 Senior Member

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    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
     
  7. Rrrr

    Rrrr Senior Member

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    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
     
  8. Rrrr

    Rrrr Senior Member

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    yes, keep us posted, sue!!!!
     
  9. Rrrr

    Rrrr Senior Member

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  10. John Leslie

    John Leslie

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

    Rrrr Senior Member

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    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
     
  12. dannybex

    dannybex Senior Member

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    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
     
  13. Robin

    Robin Guest

    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.
     
  14. Hysterical Woman

    Hysterical Woman Senior Member

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    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
     
  15. kurt

    kurt Senior Member

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    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.
     
  16. Navid

    Navid Senior Member

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    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)
     
  17. Kati

    Kati Patient in training

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    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 .
     
  18. Cloud

    Cloud Guest

    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
     
  19. omerbasket

    omerbasket Senior Member

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    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.
     
  20. citybug

    citybug Senior Member

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    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.
     

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