My AZT + RAL Trial

[MEKoan]

Frankly, I get the feeling Mike posted without thinking - maybe without reading. I can't see any other excuse for this.

 

[alice1]

hi sue,
you may be progressing slow but you're progressing.....i hope you get another upswing very soon.oxox
someone mentioned a homeopathic remedy making them worse....definitelty.this happened to me enough times years ago that i just won't do it unless it's so diluted it's hardly there.i think what some h.d or n.d forget is that our bodies are already on overdrive that adding one more task sinks us.the dose has to be minimal or down we go.

 

[Michael Dessin]

Nope, dont need alot of thought on this one. And Im not trying to throw in snide one-liners.

AZT is garage and putting that poison in a CFS body that already has difficulty in detoxing is harmful.

Im not attcking anyone personally, simply my opinion of taking AZT, apologies if anyone takes my one-liner in the wrong way.

I want only the best for Sue as everyone else, period. If my opinion means nothing to anyone, so be it.

 

[goldiland]

I've been following Sue's posts, wish her nothing but the best and hope that this works for her. I'm a big believer in doing what is right for you own situtation and this is an extraordinary difficult illness to deal with. That being said, I also think it's important on this site to state the facts from reputable sources... we're all ill with this and looking for ways to get well, whether through physiological change or symptomatic improvement.

For any of you who are looking to try AZT, I am a patient of Klimas and she specifically told me two things when I saw her earlier this month 1) She was very upset that there are people out there who are using AZT right now and she would not put any of her patients on retrovirals today; and 2) IF she was going to prescribe a retroviral, AZT would not be even close to her first choice given the side effect profile. The approach she is disucssing with her patients makes a tremendous amount of sense to me... 1) wait to see over the next few months whether XMRV is proven to be a significant player in CFIDS/ME; 2)wait for an appropriate test to be developed to test for XMRV (right now every test on the market has 20-30% variablility in accuracy) and determine whether the patient has antibodies to the virus and 3) then and only then, determine if a retroviral (and which retroviral) is the right answer for treatment.

I understand that there are those of us out there who are desperate and are willing to take risks, but I hope most of you would not consider taking a retroviral until the evidence supports it. Klimas is actually holding a update meeting for her patients in mid-May to discuss XMRV and I will post anything new that I learn.

 

[MEKoan]

Mike,

I don't think anyone took exception to your message, just the delivery. It's clear, though, and there is certainly something to be said for clarity.

Peace

 

[MEKoan]

Goldiland,

Thanks so much for that info! Personally, it would take some convincing to get me to take AZT and I hope I never have to go through that convincing! :worried:

Peace out,
Koan

 

[dannybex]

Carnitine might help...?

thanks everyone. i am very glad i took azt. things were worse than death before - much worse.

it's still very bad, but i can bare it.

if my liver can take it, i dont think AZT will harm me too much until a better drug comes along (2 years?) i am on a much smaller dose than most HIV peope took early on.

of course, if this was 5 yrs ago and i was not this ill, i would wait and not take antiretrovirals now.

sue
xoxo

Hi Sue,

As you've already made your decision and started the drug, and are feeling improvement, you might ask your doctor if perhaps adding l-carnitine might help, as I've read in several places that AZT depletes l-carnitine, which has been found to be already low in some PWC's (and many other diseases).

Carnitine helps support the mitochondria (the energy producing cells)...

best regards,

Dan

 

[Michael Dessin]

Thanks Goldiland for passing along that information and Koan.....

I'll lengthen my previous "one-liner"

I honestly dont have the energy sometimes to go into my full reasoning, so In some cases my points are brief and too the point and not intended to hurt anyone, for those who know me, they know that I always try and help and support others the best I can.

Ive spoken to some of the docs mentioned on this thread and elsewhere...in regard to AZT and have had not so good feedack, not to mean it may not work for some, I just think it should be a last resort.

Unlike HIV patients, ME patients can have serious injury to the CNS, in turn creating dysfunction of the chemical and hormonal process that regulates methylation(detox), endocrine glands, peripheral vascular system, muscles and more.

In taking a drug as toxic as AZT this can easily cause more damage to areas that are already damaged in many long term ME patients. Again, something AIDS patients dont have to worry about. Not to say its perfectly safe for AIDS patients.

I think someone mentioned they showed improvements on Ampligen, which makes more sense, since Ampligen is much much less toxic and targets RNASE, in turn modulating the immune system. Ampligen type treatments seem to be the logical treatments of the future for ME patients. (Not Anti-retrovirals).

As desperate as we are, I think these types of treatments are in the not too distant future and believing this, I dont want to see anyone hurt themselves because they feel as they will not get help in time.

But I understand Sue is suffering and is desperate....I hope whatever she tries, AZT or other therapies, she only gets well. By you going low dose, seems to be the safest route!!

Mike

 

[bakercape]

I believe HIV patients can have serious damage to there central nervous systems as well. Don't AIDS patients often suffer from cognitive problems and dementia?

Alsoif XMRV turns out to be a culprit in causing CFS wouln't antivirals make as much if not more sense than ampligen. Theoretically wouldn't ampligen just be treating an antiviral pathway that is disturbed by XMRV. It would seem attacking XMRV itself would be the most direct approach to treating an illness caused by XMRV.

Saying that I would have to go on that since we still have no idea if XMRV causes CFS I would have to wholeheartedly agree with DR.Klimas to take a wait and see approach. Of coarse I don't have a severe case of CFS anymore and if I did I would probably be begging my doctor to try an antiviral too.

I wish you well sue and every one else with this horrible illness also. It's great we have this place to share ideas and talk.

 

[Frickly]

Take care Ladybug...I am hoping the best for you.

 

[Michael Dessin]

Bakercape...good points!!

AIDS patients develope dementia for different reasons than CFS patients.

Maybe the question is, can anti-retrovirals be developed specifically taking into consideration the complex issues CFS patients may have with current ones?

 

[bakercape]

I did a little research and found that aids dementia is caused by the HIV virus both directly and indirectly. Antivirals both prevent the onset of AIDS dementia but also reverse some of the dementia once it has started.

Could it not be then that another retrovirus(XMRV) could be a cause of dementia in CFS patients and antivirals could both prevent and reverse some of the dementia. This is a big IF. I"m not convinced XMRV is the cause of CFS but do feel it is possible.

In such turns out to be true hopefully carefull research will be done with a wide array of anivirals to see which ones are safest and work best for those who test positive with a verified testing procedure.

I was really surprised to see how the Cognitive problems in aids dementia complex were so much like our own. I guess dementia is dementia right?

My cognitive problems tend to fluctuate greatly dayto dayand week to week. They are always there though. I have lost 3 cell phones this year and I can't remember names or phone numbers even if you tell me multiple times. It's scary . The worst is when your driving and then realize you have no idea where you are or where your going.

 

[jackie]

Interesting re: antivirals and dementia. Having been on them non-stop for four years...I've noticed the major area of improvement (for me) is with cognitive /memory probs.

Last year my neurologist dxd me with MCI (Mild Cognitive Impairment - also known as "Incipient Dementia" or "Isolated Memory Impairment"). I protested this dx as I felt that my problems were being caused by me/cfs. My Neuro eventually reversed his decision...for the time being (he actually gave me a prescription for Aricept and Namenda at the time of the dx).

I ASSUMED that any improvement I experienced was due to Viral suppression from Acyclovir.
Time for more research for me!

(btw...during a "crash" I generally lose a LOT of ground with my "brain" issues - and as I "recover" from the crash...I'm almost back to square one, needing to start all over again - as is happening to me right now!)....j

 

[Kati]

I would like to command Sue for sharing her experiences and feelings the way she did in the last few weeks. I am also glad that she is in peace with her choices to try AZT and even happier that she has found some benefits. Sue is in close contact with her specialists and is making sure that the drug is safe for her body. While other doctors would not recommend AZT at this very moment, it is almost irrelevant since Sue has found some benefit and has managed to go out for little bits at a time.

With Michael joining in the conversation I feel the controversy is yet one more time on conventional medicine vs herbs/vitamins/natural therapies. This will not be solved tomorrow. This thread is not about that. It's about Sue. You go girl!

 

[Ecoclimber]

Two Cents Worth

AZT is used to attack viruses that are in the active stage of replication. XMRV is a very slow replicator so it may not be the best drug to use against in vivo against XMRV and is probably why the plateau and with xmrv it might take awhile before the symptoms go away.

 

[ukxmrv]

But what happens if Dr Klimas (and other very good who are against the use of anti-retroviral drugs just yet) can only come up with the same old things that we have taken and haven't worked for the last 10 years?

What then?

That's the dilemma many of the old time patients could face.

I've had over 25 years of trying experimental treatments. My health has suffered badly from taking things like antidepressants and antibiotics. Even some anti-inflammatory drugs made me much worse.

Dr Mikovits did a list early on and I went through it with a tick, tick tick.

I'm on this thread to hopefully support Sue.

Sue, hope you are OK and that you continue to improve over time.

xmrv+

 

[Robin]

But what happens if Dr Klimas (and other very good who are against the use of anti-retroviral drugs just yet) can only come up with the same old things that we have taken and haven't worked for the last 10 years?

What then?

That's the dilemma many of the old time patients could face.

I've had over 25 years of trying experimental treatments. My health has suffered badly from taking things like antidepressants and antibiotics. Even some anti-inflammatory drugs made me much worse.

Well, if the WPI hypothesis turns out to be correct, that XMRV ---> CFS, the next step is to figure out the pathological science. That may be a long process but will yield better possibilities for treating whatever the underlying disease process is. I don't think, at that point, Klimas and the current roster of CFS doctors will be the gateway to treatment anymore. Drug companies will have a financial incentive to investigate, and we can hope that government researchers will be on the case too. Whatever pharmaceutical -- or better yet series of pharmaceuticals -- are brought forth will be fully vetted by clinical trials, thus getting us out of the dark ages of trying to treat ourselves by anecdote and experiment. (That day can not come soon enough!) If antiretrovirals are proven to be helpful, you'll be able to get them.

 

[Michael Dessin]

Bakercape--good points again!

Uh Kati--I never mentioned anything about my treatment on this thread....or made any points about alternative medicine, in fact I mentioned the benefits of Ampligen which certainly is not alternative medicine, so please stop making assumptions.

My commnets strictly pertain to the fact I think there are better options than AZT for Sue, period!!

I think there will be better anti-viral options for CFS patients, ones that are specifically designed to fight our infections. Hopefully in the near future, but I understand Sue's situation and need to try AZT.

No wonder why I never bother getting in these conversations, because certain people always bring up irrelevant comments in regard to me that have nothing to do with the thread.

 

[Cloud]

Well, if the WPI hypothesis turns out to be correct, that XMRV ---> CFS, the next step is to figure out the pathological science. That may be a long process but will yield better possibilities for treating whatever the underlying disease process is. I don't think, at that point, Klimas and the current roster of CFS doctors will be the gateway to treatment anymore. Drug companies will have a financial incentive to investigate, and we can hope that government researchers will be on the case too. Whatever pharmaceutical -- or better yet series of pharmaceuticals -- are brought forth will be fully vetted by clinical trials, thus getting us out of the dark ages of trying to treat ourselves by anecdote and experiment. (That day can not come soon enough!) If antiretrovirals are proven to be helpful, you'll be able to get them.

There will be a huge demand for less toxic treatments since so many of us have problems with that....especially the "old timers" whose organs have so much mileage on them after years and years of toxic medications. I just don't see tolerating a cocktail of the currently available highly toxic anti retrovirals. Since the demand for less toxic treatments will be high within our community, I'm sure there will be lots of research in that direction. Maybe drugs that are metabolized in the kidneys...maybe effective herbal and other natural approaches. There will be a way....I didn't make it all this way to just look at the finnish line, and not cross.

Whatever our opinions/concerns for taking powerful drugs such as AZT may be, one thing we all share is a profound empathy for one anothers desperation and reasons for going to great lengths to get well. I think my trial of Vistide all last year was an expression of desperation....that's a dangerous drug. I am hoping all the best for you Sue....and I'm thankful your sharing your experiences with us so freely.

 

[ukxmrv]

Robin,

You make some good points and I am grateful for your reply.

My problem being that I am in the UK and denied the more "simple" anti-viral treatment from my health service that some posters to this forum are able to get. I'm dependent on what I can purchase - usually from abroad.

Therefore the I have an interest in drugs like AZT that are off license and able to be purchased as cheap generics.

So, Sue is a real hero for me.

The "lets sit tight and wait and see what happens" approach may be more useful to those with access to doctors, drug programs.

I do hope that if things work out for XMRV and then for drug treatments, that the drug companies can make inroads in the UK.