So here we are… a little more than two months into our “clinical trial”, N=2, of antiretroviral treatment for X+ cultures from VIP Dx. Anything that I mention about any more people than us came to me from email or hearsay, good sources though they may be.
I started AZT alone and added raltegravir a week later. I experienced a significant reduction in malaise after a few weeks. At about six weeks, I had a surge of energy and reduction of many odious symptoms that I consider to be vasospastic in nature, as well as a reduction in air hunger which has been ever present for a long time. I tried to add tenofovir at eight weeks, probably because I felt that I had plateaued. Also that someone had to try it, and I don’t feel particularly afraid of the drugs after where I’ve been. I took tenofovir for five days. From the third day on I experienced escalating neurological symptoms, so discontinued it. At the same time I received a couple of reports of people who had started raltegravir alone and became suddenly worse.
My daughter started treatment a week after I did. She waited to see whether I was going to keel over right away:). I am not comfortable reporting about her except in the most general way. It is too much of an invasion of privacy. However, she also experienced a surge of energy at about six weeks into treatment, then an upsurge of symptoms I consider to be inflammatory and returned to about baseline. Since her inflammatory symptoms were continuing, she decided to stop raltegravir at the same time I did.
We both stopped raltegravir for five days and both experienced an almost immediate worsening of symptoms, in my case all associated with vasospasm, in her case receptor insensitivity (hypoglycemic episodes), both worse than baseline. So a rebound…
We both went back on raltegravir and those symptoms improved again very quickly, about a day. My daughter had four episodes in five days off raltegravir and has had one little one in almost two weeks back on. She started tenofovir five days ago and has so far had no problem with it. Her inflammatory symptoms persist, as do my neurological ones, but it’s not even close to where we’ve been before. I continue to experience much less malaise than before starting. My energy is more potential than kinetic at the moment:), but sitting here writing this, I don’t feel that sick.
My feeling is that if I were starting now, I would probably start with AZT and tenofovir, wait a while and then try to add raltegravir. Raltegravir may turn out to be not the right drug. But for the moment, it’s what we have. And nothing has ever dragged my illness around like raltegravir. I find that completely encouraging for the long haul. I would also like to make clear that the adverse experiences that we have had are not consistent with the very well known direct toxic effects of the drugs. I have heard a few reports of people who have tried AZT/raltegravir in combination and the response is mixed, but it doesn’t seem that anyone has lost much for trying it so far. And it’s not no response, which would actually be the worst response.
My best guess is that AZT alone is not a good enough inhibitor of reverse transcriptase in crucial tissue reservoirs. When raltegravir is added there is potential for it to be too potent. There may be a build-up of unintegrated viral DNA. When the drug was stopped it allowed viral integration and invasion of new cells. X uses XPR1 receptors, present on every cell in the body, to invade new cells. XPR1 binding damage may be involved with disease expression. My daughter’s most trackable symptom is hypoglycemia related to insulin insensitivity. Mine are vasospastic events in various organ systems. My guess is that they are ANS mediated. It may be due to affected enervation of distal blood vessels on the arterial side. Or it may be that there is a viral reservoir in smooth muscle or endothelial cells, vasospasm perhaps mediated by the direct effect of released inflammatory cytokines. Either fits with the episodic nature of the events.
I am being contacted by people who are considering testing for X or starting treatment. It is obviously a self-selected group. But there is one commonality. All are well along on their long, sad journeys and are completely willing to be part of the experiment, hoping that others may benefit, especially all the young people who haven’t had a chance at life yet. Maybe it’s fitting that this is how it is happening given the decades of neglect. We’ll figure it out for ourselves. Some of us simply don’t have the time to wait.
>Dr. Deckoff-Jones,
When I first saw you were writing a blog on your treatment I was concerned for a few reasons. I was concerned that the journalists and doctors would once again jump on "us" for scrambling for antiretrovirals and that some would try them unaided by truly knowledgeable physicians. I wanted the information out there as a matter of principle and sharing knowledge, but something held me back.
I see now that my main concern was how you would approach your blog and it's purpose. I commend you on your honesty, your caution, your commitment, and your postulating about the reasons why one medication may work and another may not. I appreciate your approach and background and thank you for sharing with us.
I have no clue what is to come in the future, or how quickly. I do know that WPI has started the ball rolling and will continue to do so, not only with XMRV research, but all neuroimmune diseases. I look forward to seeing how your experiences play out when compared to the clinical trials that will eventually come.
>just curious if you know- I dont have the fatigue that most with lyme have… do you know if you can have XMRV and not have the fatigue?
>Wonderful to hear no one has keeled over!
Thank you for reporting your keen observations and elucidating your educated surmises.
>just curious if you had thought about carnitine supplementation to help balance your energy and glycemic index… in high school i had low blood sugar.. had it tested and all… but it went away after some years… now that I have CFS i have episodes where I feel as though my blood sugar is incredibly low…the strange thing is it has never actually tested to be low since i got CFS. there are times i would swear my blood sugar is low, but it measures normal… i tried a TON of supplements for all my symptoms and most have not worked… i have degrees in math and science and started searching through pubmed for anything that seemed to have a descent amount of statistical backing…and I found a few that have improved my symptoms… (although i've had several really awful interactions)
one that has interested me in particular lately is acetyl l carnitine…its improved my energy and my fatigue… also no more weird food cravings, and my blood sugar doesn't feel like its crashing all the time.
I looked into it, specifically for the studies demonstrating that it alleviates the CFS similar effects of interferon treatment, in hepatitis and HIV patients it seems to reduce fatigue, and prevent damage from anti virals…. i did some hunting around and ive noticed a number of the cytokines stimulated from intereferon have lysine and methionine in their base somewhere… if levels of these amino acids are being drained through chronic inflammation it would make sense to me that carnitine levels would fall in the mitochondria at some point… and would seem to decrease energy levels. i don't know if there is a more direct route of carnitine depletion.
either way, i've noticed a huge shift in mental and physical energy since taking it… obviously i by myself have little statistical relevance, but it did confirm in my mind the research i hunted through… i would be curious to hear your thoughts on this…
interestingly… i only found one study showing normal carnitine levels in patients with CFS… and the same researcher, Bleijenberg, was also one of the principle investigators in the failed XMRV study in the Netherlands….
>I am so ill i`m ready to try anything if it kill`s me so be it.I can`t handle it much longer.Now losing my husband because he can not understand it just does not want too.
>Thank you so much for sharing your experience with us, Dr. It is so valuable because it not only comes from a fellow sufferer, but also from the expertise of person from the medical community.
I am currently being test for XMRV, and I have a daughter who has autism. She also has Multiple Chemical Sensitivity, and I am wondering if this can be a source of the adverse side effects you are experiencing from the medications? My daughter tolerated medications (Valtrex and Diflucan) for a while and then all of a sudden her body started reacting to the medications in ways that were not the usual side effects. They were neurological symptoms. I hope you don't mind my speculating and suggesting. Many people with XMRV have overlap with MCS and other sensitivities.
Thank you again for sharing your experiences.
>Thank you for cont to share your experiences. It helps me to keep hope alive.
>Hi, and thank you for sharing these medication trials on yourself with us! It is very valuable information.
I read that XMRV was found in "washings" (?) from lungs of patients. This may be a replicating reservoir and the reason for the breathlessness so many of us experience.
Have you read that report? Any ideas, theories as to how to help that?
>doctor, we are eager to hear any updates on how you are doing when you are able to share more!
>"some of us don't have time to wait" so why am I left still waiting after 30 years?
Hope it works for you in the long-term. I cannot find the updates to your experience with antivirals without a lot of wading through your posts. Is colloidal silver an antiviral?