My experience with ARVs

Hard to write but I thought I would do for the sake of those who consider ARV treatment. Having failed to find a doctor to prescribe them and monitor me, out of desperation (severe ME, mainly neurological symptoms, cognitive impairment) I bought AZT and TEN online. Couldn't afford RAL. After my first attempt, both med stogether, in four days I ended up womiting uncontrollably (plus 10/10 headache) and later having a bad diarrhoea. Got better with the help of my GP in a week's time (still feelig sick but able to eat andtake meds).
Decided to take AZT alone. Still made me sick but without throwing up. With every day I took it, I felt worse, till in a week's time I was so ill that had to stop it. In a week repeated it again with the same results, also lasted a week and had to stop for the same reasons. Then, after a while decided to take just one tab AZT per day. Unfortunately, had to stop this, too.
This self-treatment gave mne ever increasig general malaise, really strong muscle and joint pains (never had them before), feeling like the area around a pussy zit and only exacerbated by massage or warmth, other my symptoms getting worse, cogitive abilities declining noticeably (now I can't talk or listen more than one pharise at a time, and an attempt to cocentrate on it makes my head spin, and feel really ill; for some reason I still can write but can't read what I've written) and paresthesia getting really bad and constant. Can't really describe how my head feels. Swelled brain feeling, then the strongest burning sensation, touching the head brings all sorts of weird sensations, find it hard to lie because the pressure from the pillow seems overwhelming and I have to turn on the other side, only to have to turn again in a couple of minutes. Sheer agony. Constant spells of dizziness. Don't think it's due to restricted blood flow. I used to take Nimodiphin, IV Cerebrolysin and other prescription drugs used for head injury and stroke patients to improve blood circulation and it didn't do a thing. I don't evenmentionNiacin flash and Ginkgo.
The thing is I stopped my unfortunate attempts of taking ARVs (intolerance?) more than a month ago, but am gradually going downhill, with the last days feeling my worst and paresthesia and flashing in front of my eyes getting really really bad.
So, I just thought I would warn other desperate people out there that ARV don't bring relief to everybody and persisting in hope that one'll get better eventually actually may do even more damage. I know that if I stopped after #1 attempt, I wouldn't be feeling the way I do. And now I don't even know how to stop this downhill slide.
I won't be checking my post, so sorry for any mistakes you find. Also, I may not be able to reply soon, so better don't ask me anything. No, didn't test for XMRV. Mitkovits' statistic made me think that everybody with ME has it.

Hi I'm sorry you haven't done well on AZT.

Sadly you don't actually know if your even xmrv positive!?

Also I think with AZT your ment to have blood tests to see if the drugs are getting rid of the virus.

Also I think you need combination of drugs often with retroviruses.

I think we need to work out drugs in a research setting first.

But hope you can get over the relapse these drugs gave you.

Sorry to hear about this. It would probably best if you don't take them again until we have a better understanding of how this virus works and what the best treatment is. You don't want to risk going on and off them repeatedly and then developing resistance.

It is possible that the toxicity of the drugs caused this, but I wonder if it is actually the virus itself or immune reconstitution against it. I developed paresthesia and neuropathy while taking beta glucan, an immune booster made from yeast (or sometimes mushrooms).

In my opinion, I'm quite sure that IRIS will be hard to bear for those who are very ill and for a long time. We cannot state that your ART experience was IRIS or a bad reaction to the drugs at this point because there is not enough known about treatments. I would personnaly stay away from those treatments until more is known, perhaps I don't have the pioneer gene in me and prefer to see more evidence before trying any meds.

Regarding IRIS, I think I'm going through a pretty rough one, I told a couple of times that I was getting much better with energy healing, I could go for 20 minutes walks, cook, feeling my head was much clearer, more happy etc... and then I had a flu 3 weeks ago, with fever and chills. A week ago, I developped a cold and my kidneys start hurting, I just can't stop urinating and I am totally dehydrated. All new stuff for me, doesn't feel like CFS. Think a virus was hiding in my kidneys and my immune system finally found it.

No flus and colds for years and now all hell break lose during a month of summer, my gut feeling tells me it's a very good sign. Have to say I'm fascinated by what's going on in my body right now.

So we just don't know what to expect during the healing process, it might be VERY different from one person to another depending on what are the opportunistic infections.

I totally understand the desperation it takes to jump right in and try almost anything. Thanks for posting your reactions. I am so hoping you'll return to baseline soon.

I'm sorry to hear you are having such a terrible time, randalbond. I hope things start to improve for you soon.

I think it's important to note that while WPI's research is very encouraging, it is still very preliminary. Although 67% (or 95+% if we go by unpublished data) of the patients in that particular study have XMRV, it is nowhere near conclusive that all people with ME symptoms have XMRV infections.

The research about appropriate treatment of XMRV (and other MLVs) is not yet done. We don't know which medications will be best, what dosages give the best effect with the least side-effects, how we should be monitored for side-effects.

IMO, it is always dangerous to take prescription medications, especially potentially toxic ones like antiretrovirals, without the supervision of a qualified physician. I doubt there are many people at this forum who disagree with me.

I imagine many of us here can empathise with your desperation. This is a terrible illness. But please don't put your life at further risk by trying any further to take retrovirals without a prescription or medical supervision.

Also, while I know nothing about getting medications online without a prescription, I would certainly be concerned that you might not be getting what you paid for. So besides running the risk of taking antiretrovirals without supervision, you are also running the risk of ingesting unknown toxins.

Please see a medical professional immediately about your current symptoms. They could be very serious Even if you were experiencing IRIS, the symptoms are not benign. IRIS can be very dangerous, as can many of the other side-effects of antiretrovirals.

randal.....i hope you come back soon because my CFS sounds EXACTLY like yours and i havent run into many people with the massive brain swelling and fog that i have.

i cant really comment on your ARV experience because there is no way of knowing if getting worse for a while is a good thing. i got worse on valcyte too and it didnt end up helping.....and i got worse on ARV's and i am still really sick after 4.5 months. so it's all a toss up at this point.

may i ask how long you have been sick?

you can get RAL free from MERCK!

sue
xox

I hope you see your doctor and are able to talk about your symptoms with him or her and bring your pills with you. I am sorry you are feeling so bad.

I am not sure what country you are writing from or what country your antiretrovirals are from but my concern would be that, other than toxicity from antiretrovirals, the pills you took might not be antiretrovirals or might not be pure antiretrovirals since you bought them online without a prescription. Counterfeit medicines, esp. HAART which is hard to access in some countries, is not uncommon in non-1st-world countries and even some online pharmacies that have a base in US/ Canada and import their drugs. [Some online pharmacies are perfectly legitimate but one needs to examine them before buying.]

Here is a quick article: http://www.acsh.org/news/newsid.1774/news_detail.asp
Another quick Google: http://www.pharmainfo.net/reviews/drug-counterfeit-global-menace-and-its-remedial-measures


I know you might feel embarassed about talking to your doc about this and your doc might well give you a "lecture" but this is better than you suffering a toxic effect from some possibly unknown medicine.

If other people are thinking of taking HAART, it's really advisable to take it under medical supervision as it is already experimental and get the HAART from a verified source.

I'm so sorry to hear about your bad experience, randalbond.
Is it possible that your environment may have some toxins in it? Any toxic mold in your home?
It looks like trying to get rid of viruses while in a less than pristine environment may make our immune systems go crazy with inflammation. At least that has been several people's experiences, including mine.
Swelled brain feeling and burning skin are commonly reported symptoms of exposure to mold toxins.
I don't know if it would help, since we have individual differences, but I would try taking more enzymes if I were in your situation.

I hope you feel better soon.
Forebearance

Warm hug for Randalbond

Hi Randalbond,

It is an amazing generosity of spirit to think of looking out for others when you yourself are suffering so badly.

thank you so much for taking the huge effort of coming online to share your experience so that others can be aware of what can happen. I understand the dreadful level of devastation you are at right now so I send you a warm gentle hug and you are in my thoughts in these awful days that you suffer so much as you try to get better from the arvs.

sphynx said everything that i am feeling! you are a wonderful person to come on the forum and tell us all how you did on ARVs when you are suffering so very much.

i hope you can return to baseline soon.

Randalbond,

Very generous of you to let everyone know about your experience.

Whenever you are able, please post again to let us know how you are.

Thinking of you,
Merry

Since I am considering taking arvs I decided to read up on these drugs. I am reading, "The guide to living with HIV infection":developed at the Johns Hopkins AIDS clinic. There are many instances where AIDS patients need to change drugs because of toxic effects. The good news for them is they have about 30 drugs to pick from, where as, we have 3. It is important to be monitored by a doctor with experience with treating with these drugs. Dr. Deckoff-Jones is under the care of a physician even though she is a physician, herself. We need to tread carefully, even in our desperation, while trying such potentiallly toxic drugs.

Brain swelling

My impression is that one of the most disturbing symptoms of genuine ME/CFS is the persistent feeling of brain iflammation or brain swelling. One of the CFS gurus uses acetazolamide against brain inflammation. I tried acetazolamide without any effect.

There is one easily available chemical that reduces brain swelling and it is glycerol. So I think it could be worth of trying if you are in such a situation.

My complete sympathy randalbond ; I have some of this. I don't know how one could bare a bad dose.

Even if your ME is really bad, anyone considering ARVs should read up on the ways
it is given to AIDS folk. This is just for starters....

http://en.wikipedia.org/wiki/Antiretroviral_drug

Taking AZT alone is really the worst possible thing you could do. I would never consider it for a second; wouldn't sign up for a clinical trial designed like that even if anyone were irresponsible enough to conduct one.

Experimenting on yourself with anti-retrovirals is fraught with many dangers, but one of the dangers may be permanent: resistance. If you are infected with a retrovirus and it is replicating, the viruses are constantly mutating at a very fast rate. If you take the wrong antiretroviral, or the wrong dose, or an ineffective combination, or something less than a full "triple cocktail", you will push this rapid evolution in your body toward resistance to that particular agent. That could mean that particular drug will never, ever be useful to you again - if they develop an effective and well-tested combination that includes that drug, you will never be able to benefit from it.

It is not a risk I care to run. I am willing to participate in a clinical trial, even if it makes me really ill - even if it turns out I can't tolerate some drug or other, that information will be recorded and might be useful to someone else someday. If I only make myself sick, or induce resistance in myself, I'm only hurting myself AND not benefitting anyone else.

I edited my post. Changed my mind. This sounds like iris.

Risk factors for developing iris is quitting and beginning the drugs. Which happened with you.

I'd really recommend this page:
http://www.thebody.com/content/art46098.html

When it's over a month since you quit the drugs, and you keep getting worse, then I think iris absolutely could be the case. The symptoms of iris comes from inflammation. And as I see it, the inflammation can become chronic.

Hi randalbond,

It's been a week since you posted and I just wanted to drop by to say hello and let you know that you're still in our thoughts.

I am very familiar with the swollen brain feeling and the dreadful sensitivity in the head so that it is extremely painful to lie on but the body is too sick to sit up. I understand the extreme cognitive problems too.

Even though each of us is physically on our own in our bedrooms there is a community of 1,000s of us going through the same thing.

I know that the effort to write in here is too much right now but I just want to let you know that you are not on your own.

I hope better days are coming for you - from 1 bed to another, take care :In bed:

did u read in that info on retro drugs that one of the side effects is ME, mmm interesting, maybe now they need to update it and say ME is possibly caused by a retro virus.