My AZT + RAL Trial

[Hysterical Woman]

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.

Hi Robin/All

Robin, I really hope you are right about the pharmaceutical companies, and I hope that they do research and can find some help for all of us. I am concerned, however, about how extensively this will happen. I hate being negative, but I can't help but think that pharmaceutical companies are run like other big businesses. They are not answerable to patients, doctors, nor even the AMA; they are only answerable to their Board of Directors and stockholders. As a result, they are only going to do what is best for their bottom line.

As we all know, coming up with new drugs is incredibly expensive. Many drug companies already make huge $$$ off of us by selling us antivirals, antibiotics, anti-inflammatory drugs, antidepressants, anti-anxiety meds, etc. If they are already pulling in these huge amounts, why would they spend giant amounts of money to come up with something else? Our best bet might be that they can now do some research on drugs that were shelved when they didn't work out for AIDS? - that would be a lot less expensive than starting from scratch.

Please don't misunderstand my personal beliefs (fwiw) on this. I am not a big conspiracy theory person and don't believe that pharmaceutical companies are sitting in their back rooms saying "let's keep these people ill". But, they are a business and not a charity.

As far as government researchers go (or other organizations such as WPI) - I am hoping that there will be enough money for them to pursue this. Once again, I become increasingly concerned about the amount of research that goes on (even in universities) that is sponsored by private businesses which have a vested interest in the outcome, or that government money will be misused (ala Reeves and Emory)

Having said all that, I do believe eventually there will be better allopathic treatments for us. But as Robin said, it may be a long process. I believe that each of us can help this along by being vocal about what we need to whomever we can get to listen to us.

Take care,

Maxine

 

[Rrrr]

I, too, am supportive of Sue. No decision is made lightly. And how long could the wait be for an appropriate med? With Peptide T and Peptides in general, a nontoxic med that has shown promise in the HIV world (and the CFS world, according to Judy Mikovits), it has taken 20 yrs, and not much has happended. I did some research into Peptide T and Peptides in general yesterday and as they are nontoxic and helpful for HIV, I'm hopeful they can be explored more for CFS/XMRV, besides that one trial/study in 1993. There is a whole thread on this list dedicated to Peptide. I think it makes sense for those of us who have Judy Mikovits' ear to let her know we are eager to hear more about this drug (that SHE mentioned in one of her recent talks). Here is the tread.

http://www.forums.aboutmecfs.org/showthread.php?3243-Peptide-T-for-XMRV&highlight=peptide

 

[Robin]

There will also be need 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.

I totally understand -- I'm a long timer and have a horrible time taking medication too. But I didn't before I became ill -- I could take any drug or eat anything. I'm hoping treating the disease process in ME/CFS may resolve sensitivies to drugs and foods that people get. Don't forget that the natural stuff can be rough for some people too. It may be a matter of dosage adjustments for individual patients.

And I did a little reading -- some of the current HAART seem to be less toxic than the earlier stuff like AZT. So that's encouraging.

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.

You guys are in a rough spot with the political crap going on there. It's horrible. I totally understand where you're coming from. I hope that research done abroad can be used as a basis for treatment for you, that if it's compelling the NHS can be persuaded to change the crap treatment (CBT/GET gulags!) available.

One benefit that you do have is a variety of advocacy organizations and foundations. Another forum member and I were talking about how our advocacy situation here is so limited. In the worst case scenario, if the NHS were to deny proven treatments for XMRV that were I would suspect that some of your groups would fundraise for legal recourse!

Just to be clear, my post was in no way meant to be disrespectful or unsupportive of Sue. We are all stewards of our bodies and she is taking steps to help herself. I hope she improves a LOT!!

Hi Robin/All

Robin, I really hope you are right about the pharmaceutical companies, and I hope that they do research and can find some help for all of us. I am concerned, however, about how extensively this will happen. I hate being negative, but I can't help but think that pharmaceutical companies are run like other big businesses. They are not answerable to patients, doctors, nor even the AMA; they are only answerable to their Board of Directors and stockholders. As a result, they are only going to do what is best for their bottom line.

As we all know, coming up with new drugs is incredibly expensive. Many drug companies already make huge $$$ off of us by selling us antivirals, antibiotics, anti-inflammatory drugs, antidepressants, anti-anxiety meds, etc. If they are already pulling in these huge amounts, why would they spend giant amounts of money to come up with something else? Our best bet might be that they can now do some research on drugs that were shelved when they didn't work out for AIDS? - that would be a lot less expensive than starting from scratch.

Please don't misunderstand my personal beliefs (fwiw) on this. I am not a big conspiracy theory person and don't believe that pharmaceutical companies are sitting in their back rooms saying "let's keep these people ill". But, they are a business and not a charity.

As far as government researchers go (or other organizations such as WPI) - I am hoping that there will be enough money for them to pursue this. Once again, I become increasingly concerned about the amount of research that goes on (even in universities) that is sponsored by private businesses which have a vested interest in the outcome, or that government money will be misused (ala Reeves and Emory)

Having said all that, I do believe eventually there will be better allopathic treatments for us. But as Robin said, it may be a long process. I believe that each of us can help this along by being vocal about what we need to whomever we can get to listen to us.

Take care,

Maxine

You made some really awesome points. I was speaking strictly in the best case scenario, but drug companies, like governments and other institutions are vulnerable all kinds of biases and problems. However, they do see patient groups as "markets"! haha! I was following the stock market when I was feeling a little better, and investors carefully watch the development of each drug. To an investor, there is always room for more profit so don't worry about that! Drugs are profitable to the major developers until they become generic, at which point they get passed along to the generic market (which is also profitable but fiercely competitive.) I think Mikovits said that she's already working with drug developers on compounds which might be helpful

But, yeah, ideally funding sources would be diverse. It would be great if we had US based foundation like Invest in ME to support patient funded research! Unfortunately most of us are just trying to survive and can't set aside large amounts of cash like people with cancer and other illnesses can.

 

[omerbasket]

Sue,
I think you should be patient with the drug. It's very possible that it would take time for you to improve more. I very much know how impatient we could be, and I also know that sometimes we stop taking a drug before waiting enough time to see if it has any good effect on us.

I think AZT might be complicated, because it also might have serious side effects - but I also think that it's very reasonable to think that a big change here might take a while. There might be some ups and downs too, I think. I follow this thread anxiousley, and ofcourse it was better for all of us had you reported a huge improvement until now. But you did report about some significant improvement - and that's something - and I think it's likely that a huge improvment here would take a while (even that some other people, as you said, reported that improvement after a few weeks on the drug. Everyone is different).

 

[rebecca1995]

Hi Sue,

...the fog is a little better that before the drug but its a new feeling - an achey, tender, flu-like feeling. and a "swimming" feeling inside my head.

I think you also said once that a lot of your symptoms are above the head and that you have to take a nap after concentrating. (Me too!) Has that gotten any better on the AZT? It would be great if treatment could help us sustain mental effort longer. Thanks! :Retro smile:

 

[rebecca1995]

Well, at least the fog is a bit better! Good luck with your decision...and thanks for keeping us updated

 

[heapsreal]

hi sue, i was wondering if u were able to take valtrex with it as u had elevated ebv levels, maybe controlling other bugs at the sametime as azt could help, but i suppose its best to use one med to evaluate it first before adding anything. Will u get ebv, hhv6 levels checked again while on azt, be interesting to know if they have come down without av's.

 

[omerbasket]

Sue, and anyone else correct me if I'm wrong - But it's definitley not yet sure that this serology test discover anyone who have XMRV.
And besides, I think the following: If it's not broken, don't try to fix it. Perhaps you don't have XMRV (and perhaps you do have it), and perhaps there is a better treatment for you out there than AZT or even than anti-retrovirals, but for now no one knows what it is. You say AZT got you a 25% improvement. That is good. Perhaps being on it for enough time would get you better. Perhaps even adding raltegravir or some other anti-retroviral would get you even more better. Whether you have XMRV or not, you found a drug that helps you a little bit. I definitley don't know if it's worth taking AZT, with all it's risks, for that 25% improvement. But in any case, perhaps you would get more improvement as time goes by.

I would, however, advice you to contact Dr. Mikovits, tell her that and describe to her you symptoms and immune abnormalities - and ask her what she thinks about it (for example, does she think this test is a hundred percent accurate, and anyone with XMRV would be found positive by this test?).

 

[jackie]

Sue...Maybe you could try checking into dr. chia's theories of persistant Enteroviral and/or Herpes infections as pertaining to me/cfs? (these can cause many of your worst symptoms - especially the problems you're having with cognitive/brain issues).

Also, have you had any problem with shingles? I've remained on acyclovir for four years...and had improvement in this area (I'll be taking it for life). I'm waiting for my next t-cell count, and viral loads (should have my results next week)...i have chronic shingles. Unless you've already exhausted these as possibilities - perhaps there is an I.D. doc in your area? (sorry about your latest results...don't give up!)...jackie

 

[subtr4ct]

Try to keep your chin up. Test reliability is not at all clearly established at this point. Tissue may be where they really need to look rather than blood. Another round of testing following the government-led, multi-lab effort to develop the best possible testing procedure seems warranted. You may yet have XMRV.

Even if you really are XMRV negative, perhaps you have XMRV-2. It is very interesting that anti-retroviral therapy is helping you. Here's hoping you continue to improve!

 

[leaves]

Could it be that azt is fighting another infection, for example a systemic parasitic infection, or a mycoplasma or other bacterial or viral infection? If that is the case, it's worth it to narrow it down in order to start better targeted treatment.

 

[leaves]

Oh my, I totally understand how fed up and desperate you are. Did dr m mention when she expects the more reliable test results? Days/weeks/months?
Regardless it may be good to start ldn and immunovir too, to support your immune system and to fight coinfections. If you do have xmrv, the azt effect will be very slow as it only targets the virus when it's replicating, which is not often the case. Therefore I think the coinfections may linger on.

 

[omerbasket]

Sue,
If you do want to continue with AZT, I think it might be best for you to go to your doctor as soon as possible and see if he's willing to prescribe you AZT (the risk is that you might get improved after you are at the doctor, and that while not knowing you'll continue to improve he would say "no", and wouldn't be willing to revise his decisiob. An advantage might be that if you would not improve in the days that your current prescription would still apply to, he would see a 25% improvement in, let's say, 20 days, instead of in 30 days). The point of this would be so that if he would say that he refuses, you would probably be able to see another doctor/doctors in the time that your current prescription still apply to, so that you won't have a situation in which you would have to go off the AZT and then go back on it.

 

[starryeyes]

Hi!

Dr Candace Pert, a brilliant neuroscientist, works with the Peptide T and believes it can eradicate HIV/AIDS and I have heard she is exploring XMRV with WPI currently. Peptide T is non-toxic and would be great for most of us that are sensitive to most drugs.

So, yes, some scientists believe eradication IS possible. I will try to find the quote for you...

Just know we're all pulling for you...:victory:

God Bless,

Elisabeth

Peptide P is also known as Substance P right? That's what I found when I looked it up. Those of us with Fibro have too much Substance P which causes us pain but maybe our bodies are pumping out excess amounts of it to try to fight XMRV.

Ladybug, sorry you tested negative. '

tee

 

[heapsreal]

after being on anti-retrovirals is it possible that it may produce a negative test reult to xmrv??? Has mikovits ever mentioned anything like that.
cheers!
keep your chin up!!

 

[gracenote]

after being on anti-retrovirals is it possible that it may produce a negative test reult to xmrv??? Has mikovits ever mentioned anything like that.
cheers!
keep your chin up!!

I think ladybugmandy had her blood drawn for the XMRV test before she started AZT, the anti-retroviral. Is that correct?

 

[Forebearance]

I'm sorry to hear about your negative test result, Sue. I'm still thinking of you. It's too bad you don't have a prostate to biopsy. I hope you continue to get the AZT.
Forebearance

 

[ukxmrv]

Sorry to hear about the result, Mandy.

It's good that AZT is helping and that gets you further ahead. I hope that as the testing gets better there will be an answer

 

[DavidJ.]

25 % better in such a short time? thats awesome!

 

[glenp]

I am sorry that you are not continuing to improve Sue.

I sent you a couple of messages, maybe my message email thingy is not working. next timeI will try and remember to click request a read reply, I always forget to do that.

glen