Michael Snyderman presented his updated poster at MD Anderson last week for a conference on hematologic malignancies. Dr. Snyderman is an oncologist with CLL and CFS who believes that existing antiretrovirals should be fully investigated for the treatment of XMRV infection. His pioneering research should have significant overspill for understanding how to approach the treatment of CFS. He is exploring something which, even if partially successful, sheds light into the pathogenesis of human gammaretroviral infection. His early evidence that it is possible to effect the disease process even after neoplastic transformation has already occurred, is nothing short of astonishing.

Link to the most current ppt.
Link to presentation as a pdf.

Dr. Snyderman’s comments:

The CFS symptoms continue to be improved. The CD19 cells continue to decrease which means that the majority of the leukemia cells are responding. Thus some of the cancer measurements are favorable even if the trisomy12 story is incomplete. Cancer may be more difficult to treat than CFS but what we learn with cancer will help CFS. Several important scientists have become interested in XMRV and cancer and may sponsor studies that would benefit CFS patients.

Thank you, Dr. Snyderman.

The author of the excellent blog, CFS Patient Advocate, attended the ILADS and NJCFS conferences this weekend, and I want to publicly thank him for his continued lucid coverage of the important events. I encourage everyone to read thees informative posts from an experienced observer:

ILADS conference 2010 – Dr. Marcus Conant
ILADS conference 2010 – Dr. Jose Montoya
ILADS conference 2010 – Dr. Joseph Brewer
NJCFS conference day – Dr. Judy Mikovits

This weekend is ILADS’ annual meeting. Many people have written to me about their failed Lyme treatments. Please see earlier posts here and here for my thoughts on chronic Lyme Disease and the disastrous treatments still being pushed by ILADS. If you take a look at their agenda for this meeting, it’s pretty clear that they’re still advocating the same old, same old. There is one talk on XMRV, one on HIV and one on CFS, so there’s a little progress, but the rest of the agenda indicates that they are unable to incorporate anything new into their thinking at all.  They don’t know anything about viruses and it would seem they are unwilling to learn. Deplorable. Months before I wrote my open letter to ILADS, I was very vocal with the powers that be in that organization and was told that their guidelines were being revised. But I’ve seen or heard nothing that indicates that it is happening. Why change it? It’s working out pretty well for them. Completely irresponsible!

Here’s a case for you. Adolescent female who didn’t recover when treated for Lyme the way her siblings did. Has been treated for Lyme several times with no results for over a year. Lives in Europe and can’t get any treatment there at all. They had to travel to the US to see an LLMD to get a prescription for an antibiotic and a SPECT scan. The antibiotic didn’t work and the scan is not relevant to anything. Wouldn’t change anything no matter what it shows. The mother of this girl requested an XMRV test and was refused. So he orders tests at Igenex, but won’t order a test from VIP Dx, even for a patient who has traveled from Europe and can’t get tested there. I think there’s steam coming out of my ears while I write this. I know these guys. I knew them when I was in practice and some of them were my doctors. I can list all the reasons why they are behaving like ostriches for as long as they can get away with, but the reality is, I don’t understand. They aren’t dumb, though you couldn’t tell from their behavior. So I can only conclude that they are self-serving. Poor patients.

The current ILADS guidelines should be an embarrassment to every member. In my opinion, this document is contributing to tremendous ongoing unnecessary patient suffering. Exempli gratia, chosen at random: 27. Sequential treatment
“Clinicians increasingly use the sequence of an intravenous antibiotic followed by an oral or intramuscular antibiotic [19,37,101,47,48]. In two recent case series that employed combination therapy and sequential therapy, most patients were successfully treated [19,47]. A logical and attractive sequence would be to use intravenous therapy first (e.g., intravenous ceftriaxone), at least until disease progression is arrested and then follow with oral therapy for persistent and recurrent Lyme disease.”
Let’s take a look at the references. 19, 37 and 47 are from the J Spiro Tick Dis, so not retrievable on PubMed. 101 is a lecture by Joe Burrascano MD, an ILADS member. 48 is a paper that says that clinicians don’t follow the IDSA guidelines. Nothing about efficacy. And no references after 2003 in the entire document. For that alone I would think someone would want to update. Just for credibility. Though I don’t know why you’d want credibility without a clue of what to do.

When you put out a document like that, it is also necessary to look at the effect the document has on the real world. Obviously something the IDSA has never done. But two wrongs don’t make a right. ILADS is supposed to be the good guys.

One thing is increasingly clear to me, chronic Lyme burns itself out to be indistinguishable from CFS. LLMD’s are generally not knowledgeable with respect to CFS. None of my Lyme doctors suggested that I had CFS. Nothing about the end-point of what is being called chronic Lyme fits with an active bacterial or protozoan infection. All the antibiotics in the world, even paid for ones, won’t fix it. 

The cytokine storm that occurs when chronic Lyme patients are given antibiotics, called a “herx” by LLMD’s, is not a good thing in my opinion, if it persists beyond a short time. The idea that it means that you are killing Borrelia burgdorferii is, I believe, a complete myth.

Lyme Disease responds to treatment. If it’s going to respond, almost any broad spectrum antibiotic you throw at it will work. Tetracyclines, macrolides, penicillins, cephalosporins work. Patients who do not respond to antibiotics in an obvious way clinically will not respond no matter how long they are blasted. The patients who do not respond likely have a retrovirus or more than one retrovirus. They need specific treatment for the underlying cause of their disease.  I am hopeful that all this deviant treatment, on both sides of the fence, will eventually become an anachronism. But for now, a word to the wise. Don’t do what I did.

Patients who do respond to antibiotics, relapse and respond again may need to be maintained on long-term antibiotics. I want to say this very clearly, because I am being cast as anti-antibiotic and I am not. I am against persisting when it is a losing battle. I fully acknowledge how difficult these decisions are at this time. They need to be made individually within the context of the physician patient relationship, but they must be informed by what is known. And what is known is changing very quickly.

We don’t know what part tick-borne disease plays in the total picture. Any good doctor knows what he doesn’t know and acknowledges it. There is obviously a place for antibiotics in this patient population, but the fact that some respond doesn’t justify the huge iatrogenic injuries that are occurring. I’ve heard of quite a few gall bladders lost to Rocephin and a couple of people who still have their gall bladders, but have chronic right upper quadrant pain. And untold losses to the Bartonella witch hunt. People permanently harmed by quinolones and aminoglycosides.

Most of the patients who write to me are clearly hyperimmune or autoimmune. They do not get opportunistic infections in the way that AIDS, transplant or other immunosuppressed patients do. Borrelia burgdorferi and certain activated viruses probably play a part in pathogenesis, but are not opportunistic in the same way that happens with HIV. They do not overwhelm and kill the host.

Of course, if current HIV drugs control the disease, LLMD’s and CFS doctors will quickly become irrelevant. So why would they want to try them? Even if the patients are X+ and are begging for prescriptions. They’d lose their captive audiences. People traveling from all over to pay outrageous amounts of out-of pocket cash, which the doctors can justify to themselves, since they can’t get paid adequately for what they do under the current system, as the patients aren’t covered for what they have. Eventually ID doctors will treat it.

My husband was diagnosed with cardiac Lyme and treated with antibiotics twice for persistent arrhythmias, dysautonomia and the usual TBD suspects. Oral antibiotics made him worse. IV antibiotics gave him C. diff. He is now much better, having refused treatment for almost three years, other than a 5 day course of Alinia a couple of years ago that helped. Ali, who I once considered antibiotic dependent, has had no antibiotics since last fall. Her case actually supports ILADS’ conclusions more than most, and even she is proving them wrong.

We’re about the same as the last times we posted. Much better than when we started, but not quite as good as we were a month ago. It’s so hard to tell, even week to week. Month to month is more useful when thinking about what’s happened. We are not quite as functional as were at one point, but hugely more stable than even a few months ago. The descents into hell aren’t happening, but there have been no very recent great shows of physical activity.

A little discouraged and impatient, Ali and I decided to start a protease inhibitor nine days ago. Feeling that we do not have complete control of the virus, and knowing that a PI is often necessary for control of HIV, we decided that the potential benefit/cost ratio of a trial was good. The two papers to which I linked in my last post, identified amprenavir and indinavir as possible candidates. Postulating that the disease requires active replication of more than one virus, it is possible that a PI that affects MLV’s, might affect the disease process, even if X is not susceptible to it. Another involved HMRV might be. Due mostly to the difficulty of complying with indinavir, which is an every 8 hour drug that should be taken on an empty stomach, we chose Lexiva, fosamprenavir, an every 12 hour drug that can be taken with our other drugs.

As has been her modus operandi with her antiretroviral trial, Ali has had no significant difficulties with the drug. I, however, only tolerated it for a week. The effects were purely neuropsychiatric. Doesn’t happen with HIV. The drug has very little in the way of CNS effect. Two days on, two days off, six days off kilter altogether, definite cause and effect. Intriguing, but away from function, which is my goal. Still, depending upon how Ali does, I may try again at half dose, the way I did with Viread. The effect of Lexiva was not like the inflammatory flare that occurred with the other drugs. It’s very hard to describe in words, but, for me, it is more proof of concept, even if the clinical effect was not immediately acceptable. More evidence of retroviral drugs interacting with retroviruses in novel ways.

I would like to take this opportunity to say something that I think is much needed for all of us to think about. In our need to fight the prevailing medical impression that it is a somatoform disorder, the very real neuropsychiatric manifestations of the disease have been denied, even sometimes to ourselves. The brain is just an organ like any other. When it gets sick, it looks different than when the heart or gut get sick. It is much more threatening, because it touches on who we are at the deepest levels. The need to keep it private is very damaging. Goes hand in hand with the disbelief. Psychiatrists have done more damage to this group patients than almost any other specialty. My own psychiatric care was truly abysmal. Whores all to the drug companies. Paid at least in part, to witness their patients’ pain, they push drugs that are often harmful.

In some ways, I think the choice to start antiretrovirals now is an even tougher one than when we started. Early experience is that it is hard for most people to get on the drugs. There are positive signs that antiretroviral therapy will be the way the disease is treated in the future.

There are patients writing to me who are subjects in a funded clinical trial of XMRV positive patients. My understanding is that there is no antiretroviral arm in this study. It involves Valcyte I believe. While there may be a place for treating activated herpesviruses in this disease, in my opinion, at the end of the day, Valcyte, Valtrex, etc. will be after-thoughts. How pathetic that there’s a chance to study something that could actually control the underlying cause of the disease and instead money is being spent to find out again what we already know. Results I can figure out from my email. While individuals undertake antiretroviral trials on their own. Begging to be lab mice. Voluntary biological experiments, with no assurance at all of success. Forced to try the only real treatment possibility available, in a completely uncontrolled fashion. It’s an outrage.

It feels like we’ve dipped a little and then plateaued. Not in any way crashed, but our physical resources are more limited than we would like. It still feels like HAART is working for us, but may not be enough for full function. We are vastly improved from 7 months ago when we started treatment, but are not fully recovered, though I had similar thoughts a couple of months ago and then we started uphill again. So it would appear that progress is not entirely linear.

We have both had to back off a bit because of physical limitations and a desire to work with the drugs and not against them. The absence of relentless pain and a little energy can really go your head, let me tell you. It is easy to forget that it is necessary to take care. The disease still rears its ugly head with unfortunate regularity, but its power is significantly blunted.

Ali will tell her own story soon I’m sure. A couple of weeks ago, I started having more sleep problems again. Sleep disruption is a sentinel symptom for me. A bad night’s sleep is generally followed by a sick day. Chicken or egg. A few days into it, I realized that I had let myself run out of Deplin by mistake. When I restarted it, things improved again. In my excitement to have discovered how potent it is for me, since I didn’t notice much going on it, and because it has been so obviously important for Ali, a trial of higher dose, 15mg, seemed like a good idea. It disrupted my sleep completely, so I went back down, but things have not yet settled down all the way. The other possible contributing factor was a change from a brand Estrasorb to a compounded estradiol cream. My sleep is completely dependent upon adequate estradiol, so I’ve switched back to what I was using before. The last couple of nights have been better, but not yet good again. My symptoms are subsiding as the sleep issue improves.

My recent experience with Deplin has led me to read more deeply about the methylation cycle to try to understand why l-methylfolate supplementation might be so important. Our current drug regimen can do nothing about existing integrated virus, which can be transcriptional or silent. It is unlikely we will be well unless the virus can be silenced. Take a look at this paper: (Blaskova/Hirsch). They found that the latent reservoir in HIV infected individuals without viremia had hypermethylated HIV-1 promoters that are resistant to reactivation in vitro, as opposed to viremic patients with hypomethylated 5′ LTR.

We have both begun weekly injections of B12 (hydroxocobalamin), 10mg IM, and a multi which includes B complex. The vital cellular functions that are dependent on the B vitamins require an adequate supply of the complex.

I am having an exacerbation of muscle weakness and a feeling of lactate build-up that could be related to adverse effects of AZT, though it goes up and down with all my other symptoms; if it were an adverse drug effect, I would expect it to get steadily worse, not wax and wane. In addition, there are a couple of patients who write to me who are having problems that could be AZT related or exacerbated. It is unfortunate that drug choices are so limited. Ali still has not experienced any problems at all attributable to the drugs. I would like to point out that I do not feel in any danger. If I have to, I’ll stop the drug, but I want to stay on it and will push through if I can until I know more.

Presumably integrated virus is still transcriptional. The negative testing for the protease inhibitors against X is unfortunate. The PIs interfere with the assembly of new viral product. A PI is necessary for complete blockade. There is a tiny amount of evidence in the literature that MLVs are inhibited by the PIs amprenavir and indinavir (Powell/Otto, Feher/Tozser). It is possible that XMRV protease differs from that of HIV too much for the drugs to have an effect. It is also possible that there is a problem with the testing of the entire class of drugs to date. In addition, one might speculate that even if X is not inhibited by the existing PIs, P might be, given that there is apparently activity against MLVs. We are considering our options.

For me, being better enough to enjoy myself is almost an ecstatic experience. I really didn’t expect to get better. Nothing in my years as a doctor had led me to believe that my illness would do anything other than continue on a downhill course. The story of HIV, at least in this country, is a hopeful one for us. The AIDS patients who died in the early years missed the benefits of the unfolding science, but most of us will still be around to see it, our disease is so slow. The trick for us will be to go on with the time we have left and not be anchored by anger and loss. There is redemption in forgiveness. Much has been lost, but there have been gains as well. Many of the people writing to me are struggling with or have mastered acceptance of very difficult realities. When released from the prison of illness, that wisdom and compassion will be a force to be reckoned with.

I have set up an elist for patients who are taking antiretrovirals and prescribing physicians to share treatment experiences. Caregivers are also welcome. If you have started or prescribed treatment, please contact me if you would like to be included: jdeckoffjones@gmail.com

For ME/CFS Patients, Their Families and Friends

Organizers:  Robert Miller, Rivka Solomon, Charlotte von Salis
Contact: bobmiller42@msn.com

On the heels of the September 7, 2010, historic NIH meeting with ME/CFS patients and their families, now is the time to let our federal health agencies know we are expecting big changes. The more they hear from us now, the more they’ll listen to us next time we meet. Our “Time for Action” campaign is advocacy made easy — yet it will have a huge impact. We ask patients, their families and friends to email, call and/or fax NIH Director Collins and NIAID Director Fauci with this simple question every day, starting today. (Please Cc: emails to Robert Miller at: hebs1reel@yahoo.com)

Dear Directors Collins and Fauci,

What have you done for ME/CFS today? Patients and their families are waiting.

Name: John Doe (or John)
Location: Miami, FL
Time: Sick 12 years

Contact info:
1)  National Institutes of Health
Director Francis Collins
Email: collinsf@od.nih.gov   
     Cc to: hebs1reel@yahoo.com
Phone: 301-496-2433
Fax:  301-402-2700

2)  National Institutes of Allergy and Infectious Disease
Director Anthony Fauci
Email: afauci@niaid.nih.gov
     Cc to: hebs1reel@yahoo.com
Phone: 301-496-2263
Fax: 301-402-3573

For inspiration, here’s their “How To” video.

This presentation, of great historical importance, from the 1^st International Workshop on XMRV, is posted with permission:

XMRV:  Virological, immunological and clinical correlations in patients with Chronic Lymphocytic Leukemia and Mantle Cell Lymphoma
M. Snyderman, I. Sylvester-Brao, D. Goetz, K. Hagen, V.C. Lombardi, D.L. Peterson, P.H. Levine, F.W. Ruscetti, J.A. Mikovits

Link to Powerpoint Presentation
Link to presentation as a pdf

A few people have written to me that a rumor is circulating on the internet- apparently a doctor reported to a patient that two patients have died on AIDS drugs. I first heard this rumor a couple of months ago from a patient in Europe who heard it from a doctor there. Both of these doctors attended the same events in Reno last month, so I presume they communicated about this and are talking about the same two patients. In the reports that I heard, there was no other meaningful information given. It seems to me, that under the circumstances, it is incumbent upon the reporters to provide specific details of the cases. Since patients are making pivotal decisions based on very little scientific information, it is not responsible to attempt to influence by rumor and innuendo. Complete clinical information is essential to make use of the risks that others have already taken. I have never seen an example where transparency from the practicing physicians was more needed.

If any X+ patients taking AZT, tenofovir and/or raltegravir have died, nobody wants to know about it more than I do. I invite, no beg, the doctors spreading this rumor on both sides of the Atlantic to share the pertinent details. The patients who are in the process of making a decision about whether or not to pursue treatment now, need to factor in all relevant information; they should have any available data. Without the kind of detail I’ve been providing, any statement about AIDS drugs killing people is meaningless fear mongering. And if it is true that the spectrum of response to antiretrovirals runs all the way from near recovery to death, well then, clinical trials and a full-court press from the scientific community are even more urgent than I thought. It seems highly unlikely, however, that anyone has died as a result of the three drugs in question. These drugs simply don’t have adverse effects that would be fatal. They are not new drugs and the adverse effects are very well understood.

This seems a very good time to say again what I have said all along. I am not advising anyone to make the same decisions that I have, but I do think that everyone should have that right. Waiting to participate in a clinical trial is reasonable for many, but for those who feel they can’t wait, or won’t wait, there’s nothing magical about a clinical trial. They give you the drugs and see what happens.

We have a little more information now than when I started antiretrovirals. It seems to be more difficult for many to get on the drugs than I expected from our experience. Also response to treatment is more variable and slower than I would have anticipated. All of this needs to be factored in with each individual’s particulars in partnership with a knowledgeable, or at least interested physician who is willing to learn.

There is a small, but growing coalition of doctors committed to helping now and in the future- committed to keeping up with a shifting landscape. The unmet need is too great to stick to business as usual. Many physicians have become inured to the suffering. I think that will break down as the science penetrates the medical culture and new physicians become interested. I encourage any doctor reading who wants to help to get in touch. Participate in this journey of discovery. Patients all over the country are looking for physicians willing to work with them. I am happy to serve as a connection point.

Why now, all of a sudden, is everyone so worried about CFS patients taking drugs that may not help? How ridiculously paternalistic! Apparently some of our doctors think that we aren’t smart enough to assess all of the available information. What’s our problem anyway? Why not let them decide for us? Haven’t the authorities done a great job figuring it out for us up until now? At this point in time, it’s clearly the patients who are most able to connect the dots.

Everything I am writing is my opinion only. Someone commented anonymously on my last post that it is irresponsible of me to post my clinical impressions. I am contemplating that deeply.

The most well known physicians caring for patients with CFS and chronic Lyme Disease don’t hesitate to put their clinical impressions out there publicly. Desperate patients who can’t afford their services try to make sense of their diseases from what they’ve read on the internet. I am not currently in practice, but I have perspective. Many perspectives. Most of the people reading and writing to me, clearly understand that I cannot give them personal medical advice. I am reporting on our experience, but part of my experience is a large volume of email from patients who share their histories. It has become an incredible learning tool for me. In addition, I am in touch with most of the physicians in the country who have prescribed antiretrovirals for XMRV+ patients. And I have 25 years of clinical experience under my belt, in both conventional and alternative medicine.

The reality is that I disagree with almost everything with respect to the current ‘approach to treatment’ of CFS/chronic Lyme. Yes, there is a ‘mitochondrial defect’, diastolic dysfunction and many other dysfunctions too. Much has been made of the cardiac abnormalities observed on echocardiagram in CFS patients. Personally, I’d rather see the attention paid to brain function. But the reality is that any organ that you study carefully will likely show the disease. It is a multi-system illness. My cardiac abnormalities were picked up by a careful cardiologist in 1996. They have not progressed. Some of the abnormalities noted then are better now. In fact, I was athletic with diastolic dysfunction for almost a decade. Some CFS patients have been told that they have heart failure, but it is clear that the cardiac dysfunction that is being noted on careful echo does not progress the way that classic CHF or PH does. Those patients are generally dead in a very few years.

The best way to treat the metabolic and functional abnormalities that are caused by the virus is to shut down the virus. It’s true in HIV disease. It’s common sense. We may or may not be able to do it with available drugs. Time will tell. We know that the drugs move the disease. They really don’t do much but interfere with retroviral replication, other than AZT (inconsequential macrocytosis and a few long-term side effects that take years to develop and may or may not be worth it, depending upon new drug development). The drugs can have some adverse effects on the kidney and liver that are easily monitored. It would be wonderful if tenofovir and raltegravir alone do it. For the moment, we know that HAART for HIV relies on synergies between three or four drugs.

I would like to remind everyone that many were saved from horrible AIDS deaths by AZT before there were viral load measures available. And they got the dose wrong for a while. That may happen this time too. There were courageous doctors on the frontier then also, before the science had given them the answers. A very few of them are on board for the coming struggle. Many, many more are needed.

My clinical intuition and personal experience getting on the drugs tell me that this group of patients would have an easier time of it starting out on a low dose and going up slowly, possibly something like a quarter tab of one drug, going up a quarter tab a week, until all three drugs are on board. The inflammatory flare can’t be a good thing. The problem with this strategy is the possibility of encouraging resistance to the drugs. Until we know more about how stable the virus is, we are completely in the dark about this. It may be that it doesn’t take HIV doses to suppress X/P. But the Singh paper showed that X is slightly less inhibited than HIV at the same drug concentrations in vitro. So for now, until we have viral load measures, it seems prudent to stick to established HIV doses.

I am speculating along with all of you as to what it means that lots of infected people are clinically healthy. There are many possibilities. It may take more than one virus to get sick. It may take a very, very long time for some people to get sick. It may require a genetic predisposition to get sick. It may take the presence of virus and a particular injury or trigger. There are likely genetic restriction factors involved in staying well.

It seems to me that it would be irresponsible of me not to report, so that patients who are choosing to try antiretrovirals on their own know what to expect, at least know what I know. There is so little information available and without viral load measures, it’s all guess work. For now, we must rely on clinical intuition. That’s what a good doctor does everyday anyway.

If my luck holds out, I will have my own patients soon. If my last Lyme doctor is reading, I wish he would comment on what he thought my chances were a year ago of my returning to work.

My intention is to continue to report my experience and opinions. My assumption is that everyone reading knows I could be wrong about anything. It’s all just my best guess.

Although we are clearly greatly improved, it still doesn’t feel like solid ground. We are bobbing on the surface. The underwater times are brief, but they are still there. When the illness does rear it’s ugly head, the downhill excursions have been relatively mild and not scary like they used to be. It’s been a while since I considered an intervention for either of us more invasive than herb tea and tincture of time. We haven’t been to the ER for quite a while and it doesn’t feel like the regular visits of the past are in store for us anymore. It’s a great deal, but not everything so far. I’m still searching for adjuncts to strengthen our gains. The knowledge of the underlying cause of the illness and the emerging ideas about what may be happening in terms of pathogenesis allows contemplation of new strategies.

When I first started blogging, it never occurred to me that we might not be representative of the people trying treatment or that the numbers would be so small. It may still turn out that others will respond as we have when more time has passed. It is very early days. I’ve done a lot of soul searching about what it means to give people hope when it might not work. But I think that even if these drugs don’t work, or only work partially, it’s not false hope. I do think that there’s light at the end of the tunnel, though it’s a long, dark tunnel still. The experiment with existing antiretroviral drugs moves us ahead. It puts the government on notice. It puts the drug companies on notice. It puts the ID doctors on notice. There are a phenomenal number of people who need treatment now, not in a few years. The faster that people accept causation, the fewer man-days lost in hell.

It seems so far that most CFS patients feel worse, at least for a while, when they start antiretroviral treatment. In my opinion that has nothing to do with safety of the drugs, but more with an interaction between the drugs and the virus that we don’t understand. We have no idea why people feel worse, but it is almost certainly NOT side effects of the drugs for the majority. HIV patients generally feel fine starting the same drugs. For most, the flare that occurs starting antiretrovirals seems to subside, but no one knows at this time what will happen for any individual. The patients who are writing to me who have started therapy are fully cognizant of what they are doing and why. They feel that they are participating in something bigger than they are, as do Ali and I. The knowledge that others might be helped makes it easier. They know what happens if they do nothing. They have a right to find out now if these drugs will work for them. When formal clinical trials finally start, it will still be these drugs, because that’s all there is for now.

As far as treatment of opportunistic infections is concerned, if an HIV patient gets Pneumocystis pneumonia and is treated with antibiotics, they get over it and feel fine. Does that mean that Pneumocystis is a cause of AIDS? No, the cause is still HIV. It is a silent killer. Treatment of the opportunistic infections and other issues, like low testosterone, will allow the patient to feel better. They will still end up dying if you don’t shut down HIV. This may turn out to be similar in XMRV/HGRV infected people. When their retroviral infection is controlled, treatment for their opportunistic infections, viral, bacterial, protozoan, might actually work.

If we could depend on our governmental agencies to treat this with the urgency it demands, it wouldn’t be necessary for people to experiment on their own. But as it is, some feel they have no choice. Several have written that they are not going to commit suicide yet because of the experiment. That they are going to stick around and see what happens. I submit to you that it’s not all about this protocol. If not these drugs, there will be XMRV/HGRV specific drugs in our future.