My AZT + RAL Trial

[DysautonomiaXMRV]

RNASE-L test in Europe is $229, not $800, I expect Vipdx runs a similar price.

Wise choice to listen to your body and stop now. At least it was one hell of a unique experience, you're probably at least 12-24 months ahead of any drug trial.

Safety first I think, and you made the right choice even if it was frustrating and disapointing to have to stop taking the medications.

 

[grant107]

Sue,
I, too, started having tachycardia. It was really bad and each attach left me totally wiped out. The doctor put me on Topral and that got it under control. I wonder if your doctor thinks something like topral will interfere with the AZT or ral. I hope that is not the case because I am thinking of trying the azt and ral myself, since I am xmrv positive. I am afraid I cannot go off the topral. Tachycardia, I think, causes this disease to get worse. So it could be the medicine is working and without it you would be much sicker.
I appreciate your sharing your experiences with us. I am really pulling for this to work.
Lots of luck,
Jean

 

[cfs since 1998]

Personally I would save my money with regard to RNase-L testing. Until we have a viral load test or the XMRV equivalent of a the CD4 count or p24 antigen used for HIV I am not sure any testing is worth it. Natural killer cell activity or cytokine testing might shed some light but those are expensive also. CD57 enumeration at a common lab like Quest or Labcorp is probably cheaper but may or may not be useful.

I am sorry you are feeling discouraged but keep hanging on. It's so early on in the game as far as what we know about the virus and how to treat it.

 

[leaves]

Hey Sue,

I think it would be really ueful for you if you would keep a diary where you can rate the severity of your symptoms; it would give you some oversight and maybe more control over all this. And also for researches or other patients who want to start the meds it would be great ofcourse

 

[Knackered]

A few points I'd like to raise here, XMRV has not yet been proven to be the cause of CFS, as broad as it may be and it has not even yet proven to be the cause of CCD CFS, although it does seem likely. XMRV != CFS, by the very nature of the ambiguity surrounding the term CFS when it is used in the way it has been, mainly due to the misdiagnosis perpetrated by confused medical practitioners. As I have not received conformation of being XMRV positive or negative I believe it is best to have this in mind, especially if one has received one or more negative tests, I for one have considered this eventuality but I do believe I will test positive.

To be diagnosed with CFS does not mean anti-retroviral medication will help or work and any early reports on their efficacy, whether they be positive or negative should be treated with caution.

Edit: Just to clarify, I'm more than sure XMRV causes CCD CFS.

 

[Forebearance]

Hi Sue,

This is total speculation, but I've noticed that when I take Vit. D, I get really depressed. Someone suggested that maybe there is some kind of battle going on in my brain that the Vit. D. launches by giving my immune system more power to fight. So.... I wonder if feeling depressed might be a sign that you are fighting something that lives in the brain. Just a thought. Hang in there.

Forebearance

 

[Knackered]

hi guys. i am not depressed really...its the fog and the swollen feeling that has always been there to some degree. maybe the worsening is a good sign but i have no way of knowing.

knackered...i got sick after mono. i have every single marker of CFS....i have been tested for everything else. i just dont know what else it could be. i do know i probably won't be around long enough for the nesxt breakthrough. :-/

It's not a personal dig at you, I just don't want people to think that something doesn't work for one person, it won't work for another. We're all ill and we all hope to get better. XMRV isn't the be all and end all.

All the best Sue, many of us could be in the same boat, let's not exclude anyone.

 

[kolowesi]

Hi, Sue,

I can't understand why the doc won't give you anything for tachycardia. Is this the infectious disease doc? Tachycardia is exhausting. Plus isn't there a danger of the blood pooling in the heart and a clot forming (I hope I'm mixed up about that, maybe that only happens with fibrillation).

I wish I could call him/her up and ask for a trial of a beta blocker. People take that for piano concerts even. It's not that big a deal, I'm pretty sure.

The tests being negative is such a huge drag. But then on one of the threads is a post about running the test within 6 hours of the blood draw. Which really makes me wonder.

It's very hard to be a pioneer. Thank you for keeping us posted and for all the information you have gotten and all the things you have tried. It helps us all.

Kelly

 

[alex3619]

Hi Sue

I have thought of an additional test that is worth at least asking about: sIL2r. This is the soluble interleukin-2 receptor, and is typically elevated in autoimmune disease, and frequently in CFS. If it is really cheap and you are thinking of getting IL2 tested, this test might help with interpreting the IL2 results because sIL2r is a factor that inactivates IL2 in the blood.

Bye and best wishes,
Alex

 

[citybug]

I would go with natural killer cell function also. Dr. Mikovits said that low interferon alpha was the only thing that correlated with xmrv positivity. Maybe you could ask her sometime if that would move with treatment.
I'm also not doing well, but I felt the UK mitochondrial test was worthwhile. I only did one part for 95 pounds, for which chemicals blocking. off topic for this treatment.
A friend with lyme talks about her brain in a similar way. Gets worse around full moon. My igenex test was borderline. Doctor said to do the VCS test again on Shoemaker's site. Used to be around $12. I should do that!
I wonder if the Emory people who published on serology study for xmrv would test anyone for research?
Thanks for being a pioneer and hanging in there!

 

[citybug]

Also if there were some simple things you could watch yourself to pick up improvement that you might not notice otherwise. I want to get a pedometer to see what range I am in. Also if you can read blood pressure or get it tested on dr visits and see how much it drops after standing few minutes. And something cognitive,

With all the communication you've done to get this trial started, I would be in a crash just from that I hope you get to relax sometimes.

 

[cfs since 1998]

Tachycardia

Hope you are doing okay lbm. I just wanted to point out that Dr. Lerner's new paper has a passage about tachycardia (page 50; 4th page of pdf):

Atenolol and fludrocortisone acetate
Resting tachycardia with orthostatic hypotensive syncope were treated with atenolol 12.5–50 mg every 12 to 24 hours.11,12,14,15 After beginning atenolol, the 24-hour HM recording was repeated seven days later to confirm that tachycardia had decreased. When needed, digoxin was also used to decrease tachycardia. For associated orthostatic hypotension, 0.1 mg fludrocortisone acetate every 12 to 24 hours was administered. As the EIPS value rose and symptoms diminished, atenolol, digoxin, and fludrocortisone were discontinued.

 

[redo]

It's also possible to take the CD26 test:
http://forums.aboutmecfs.org/showth...-DPPIV-impaired-in-CFS-retroviral-involvement

Although I am not sure where it's done.

 

[jackie]

cant read through whole thread...but if you're continuing with AZT/RAL good idea to check the basics - cd4&cd8 at intervals (watch for iris/help to gauge progress, imo...maybe you already are?...cant remember) wish more docs would do this (watching for that window of time where iris might take place - wont know without tcell #'s) also..with av's anyway...folks usually get worse before getting better - may be similar w/arv's? good luck...j

 

[goldiland]

Sue,

I've been following your posts periodically since you started and admire you for trying to do something to help your circumstances even though the result is so uncertain. In my humble opinion, I would really encourage you at this point to get yourself to a good CFS specialist who can treat and monitor your condition. While you are obviously very ill right now, you clearly have the motivation and aptitude to get yourself on a different life track and that says a lot about you. I am not in your shoes and pass zero judgment about how another individual makes choices for themselves but to me, the only logical way is to have appropriate testing conducted, get on a treatment plan that fits your circumstances and be monitored. Piecemail testing, self-diagnosis, self-treatment, subjective individual judgment about what a treatment is or is not doing is a very slippery slope. I have done many of the same things and at the end of the day, you have no idea whether you're doing the right thing and you'll never really find out. What I am saying may seem very obvious but Nancy Klimas has saved me twice from the depths of hell and while I may still have CFS, I am no longer sick and non-functional. I very much wish the same for you.

Regards,

Gregg

 

[shannah]

I'm just wondering what impact on treatment a methylation problem might have. Would it hinder progress because of an impairment to detox properly do you think?

 

[guest]

Sry, what happened to Sue and why are her posts deleted?

 

[citybug]

I've been following your posts periodically since you started and admire you for trying to do something to help your circumstances even though the result is so uncertain. In my humble opinion, I would really encourage you at this point to get yourself to a good CFS specialist who can treat and monitor your condition.

Before I got to the end I thought you must be seeing Klimas. That is such a tall order in most locations. I hope they start taking insurance at the clinic soon.

Sry, what happened to Sue and why are her posts deleted?

She's here on another thread.

 

[Tony Mach]

bump

Sry, what happened to Sue and why are her posts deleted?

She's here on another thread.

Which thread? I couldn't find anything from her about the AZT.