I have been reluctant to report anything publicly with respect to the effects of antiretrovirals. It is my belief that without the benefit of clinical trials to guide us, each person who chooses to go down this road at this time should decide on their own with the scientific information currently available. I didn’t want to influence that decision with a single positive report. But I’ve changed my mind about reporting, as, incredibly, my response to treatment is a significant fraction of the clinical information currently at hand for those trying to decide how to proceed.
I am Harvard/Einstein educated. My medical school training took place mostly in county hospitals in the Bronx. My father was a brilliant surgeon and I wanted to follow in his footsteps, but wanted a life too. Things weren’t too great for women in surgical training back then. So I became an emergency physician, before there was such a thing, and a surgical first assistant in a community hospital where I was the director of the ER.
From ’86-’96 I worked at Santa Clara Valley Medical Center in San Jose, CA. It is the Stanford affiliated county hospital, regional burn, spinal cord injury and neonatal intensive care units. During that time I became the assistant director of the ED and director of Urgent Care. Before becoming a mother, I flew a few shifts a month for Stanford LifeFlight. I was the queen of stress.
I never saw a doctor until I was 41, including two home births. I had my first neurological symptom (sensory) when my second baby was four months old and nursing. It came and went for four days. I thought I had MS, then it went away entirely and I forgot about it. In the year that followed, I experienced several recurring seemingly unrelated problems. In hindsight, they were all different manifestations of vascular instability and dysautonomia. About a year after my first overt symptom, I experienced a series of personal tragedies in quick succession. Shortly, thereafter, I developed symptoms that precluded working.
When I stabilized from the crash, I didn’t seek treatment. As a doctor, I intuitively knew that there was no help. I recovered enough with no treatment to have a private practice. In my practice, I treated the after effects of brain injury alternatively, predominantly with HBOT and neurofeedback, including patients with ASD, Lyme Disease and ME/CFS (not always identified as such). In ’03, my entire family was diagnosed with Lyme Disease. My daughter had had acute Lyme in ’00 that was successfully treated, but in ’03 became ill without another known tick bite. She was antibiotic responsive, leading us to six years of treatment by LLMD’s with disastrous results. I have been critically ill twice since then. Last summer, I fired my doctors and went off all treatment. I have been on an up-hill trajectory since then.
Even though I treated patients, I never identified with ME/CFS though I now meet all sets of diagnostic criteria. Until I was treated for Lyme, I didn’t consider myself fatigued. I was still very athletic. My “fatigue” consisted of an inability to tolerate sustained mental activity. I had symptoms of vascular instability related to working, and in my last two years of practice, I had to shorten my work day. Depression and brain fog are not part of my symptom complex (except medication induced). I have had a sleep disturbance since working 36 hours on/12 off for months at a time as an intern and I worked 24 hour shifts in the ER for years followed by many years of night shifts. I have had malaise most of the time since my first crash in ’96. I’m not interested in sharing my long list of symptoms. All CFS/Lyme patients have such a list. Vascular instability and a relapsing, remitting very slow degenerative neurological process define my illness, with almost autoimmunity.
When I first saw the Science paper a few days after it was published, it was an ah-ha experience for me. I knew very little about viruses and almost nothing about retroviruses. But what little I did know enabled a fusion of everything I’d learned as a doctor and a patient. So much so, that as I sent my daughter’s and my blood for culture, I thought, if it isn’t this one, there’s another one out there. Here was the fundamental cause of all the subtle and not so subtle things that had gone wrong with my entire family, including the opportunistic infections, the genetic piece, an explanation for vertical transmission and even the activation by stress that matched my direct experience (the virus has a glucocorticoid receptor element in it’s promotor region). I also saw X in my family of origin, members of whom have had aggressive prostate cancer, autistic spectrum disorder and Lyme Disease. So I had a lot of clues.
For me, understanding is everything. I finally know what I am fighting. I expected that it would be years before there was meaningful treatment. But when the Sakuma paper was published, even though only one drug was inhibitory, I became more hopeful for the near future. I have been sailing around in the fog without a navigator for so long, that the Singh paper seems like a having GPS to me.
I had a mild neurotoxic reaction to starting AZT, that has subsided incompletely (still have peripheral paresthesias increased from baseline). Cheap stuff. Easy to tolerate. About a week after starting Isentress, so during the third week of treatment, I experienced a noticeable reduction in malaise, always a prominent symptom for me. During the beginning of the sixth week, I experienced an increase in energy and ability to be semi-functional for several hours a day. Previously, I was essentially couchbound and going to town was a monumental effort. I can now run to town for a few errands and it’s not a big deal. Other symptoms are better as well. Neurologically, I think I am a little worse, but it is manageable.
I posted that I had started tenofovir a few days ago. The last day and a half have been very bad for me. Definitely toxic. I am reporting now because I believe that this is how it’s going to be. This is NOT going to be a bed of roses. I have been sick a very long time. I am a canary in the coal mine. We have no way of knowing what immune reconstitution might look like. There isn’t much science to follow, except for what has been learned from managing AIDS, a very different bug. It’s going to be a long time before the scientific community helps us. Even our own doctors seem to be slow on the uptake. I don’t know of a single clinical trial that is in the works. Testing even seems to be controversial in some circles.
I am an ER doctor by nature still. Triage. Impact the process where you can. Take care of the people circling the drain first. I am very far down the road so I am in that category.
I am trying to decide whether to continue the third drug or not. I would not stop the other two right now for anything. Just having the malaise controlled is worth it for me. I am not particularly frightened that anything is going to happen that won’t reverse with stopping one or more drugs. Calculated risk. I know what happens if I don’t treat it.
>Thanks for reporting. What form does the toxicity take? What neurological symptoms should someone who takes this drug be prepared for?
Good luck with everything.
>It wasn't my intention to report on the side effects of the drugs. There is vast experience with the drugs and the side effects are well known. The only reason I described my illness was to put my report in context, since there are many different presentations of ME/CFS/Lyme/atypical MS. In some very important ways, I am not even a typical patient. A drug that I find exacerbates my symptoms might cause no problems at all for another CFS patient. I can't advise strongly enough that anyone considering treatment for XMRV be in the care of an interested physician, preferably one experienced in treating AIDS, but at least a good generalist who wants to learn.
>Hi Doc.Jones,
Since you are the universal guinneepig…
Have you thought about adding an immunemodulator such as eg. Imunovir to your regiment? Or even GLA from Borage.
I've heard more than one CFS specialist say that the combo of immunemodulators and antiretrovirals would probably be the way to go.
C.
>Thank you so very much for sharing. I'm curious as to whether you ever tried Ampligen.
It helped me tremendously although not a permanent "fix", it lasted quite some time. I was hoping for FDA approval and then treat for a year or so, then off a few years, etc.
Any comments? I have Lyme as well and it kept the long list of viral and bacterial infections under control.
Linda
>Feverfew inhibits NF-Kappa-B, as told to me by a superb practitioner specializing in treating autistic children.
See:
http://scholar.google.com/scholar?q=feverfew+nf+kappa+b&hl=en&as_sdt=0&as_vis=1&oi=scholart
Here is another good review:
http://www.ncbi.nlm.nih.gov/pubmed/16918500
and
http://www.ncbi.nlm.nih.gov/pubmed/17634269
I find sour red currants to be very helpful, and I may try sour black soon.
But he uses feverfew specifically in the kids to inhibit nf kappa b.
Sent you an email.
>Thank you so much for sharing all this! I hope you continue to improve, both for you and for all of us (as many of us may follow your lead).
Can you tell us, were you (are you) one of the hyper-sensitive CFS patients? That is, do you usually find that most meds make you sicker and you must start them at a tiny tiny dose?
Thanks!
>I am not particularly chemically sensitive.
Jamie
>I'd like to clarify my canary in a coal mine metaphor, since several people asked back channel. Neurologically, I am a canary in a coal mine. I believe that my neurological function is a sensitive indicator of toxicity. That said, if I can take something, I can usually take a full dose.
Jamie
>Can you tell us just what 'nf kappa b' is, what it's related to? Thanks so much for your personal story; may you be well soon!
>Hi Dr. Jones. Thank you so much for posting your experience. I am a 15 yr PWC and Lyme. I'm saving for the XMRV test. I suspect because of all my co-infections that I am XMRV positive. Best wishes to you and your daughter.
>Thanks for your posts. Everything I have read about XMRV seems to make good sense. I'm glad there seems to finally be some answers to a lot of questions.
I have suffered with FM for almost four years now. (It seems like an eternity, but, yes, it has only been four years.) I am ready for some answers. Why has the Whittermore Peterson institute been fighting such an uphill battle?
It is reminding me of the movie "Extraordinary Measures".
Where can a person go from here? How do we find a doctor who is willing to try something new?
>Oh, I forgot. Yes, I have tested positive to the XMRV virus.
>Dear Dr. Jones,
I think, I posted this message before on the wrong place
Thank you so very much; I'm trying to understand it all.
But I have one problem – In the part: *The lessons of HIV and HAART* – you say: *At this point, we have three studies (see Essential Reading link to Sakuma, Paprotka, Singh papers).
But when I open the Essential Reading link (Link to journal articles), I only find 2 papers (google UR: http://docs.google.com/#all)
First: *Early onset of autoimmune disease by the *Early onset of autoimmune disease by the retroviral integrase inhibitor raltegravir* – G B Beck-Engesera et al.
Second: *An examination of drug-drug interactions with raltegravir* – Justina Edmunds-Ogbuokiri – so this is something else than the 3 Sakuma, Paprotka, Singh papers. –
I'm really very interested in these Sakuma, Paprotka, Singh papers
Am I too brainfogged ? – Is this an error ?
Will you please be so kind to give (again?) the URL's for these papers
Jan van Roijen
Amsterdam
Editor *Help ME Circle*
~~~~~~
>Hello Dr. Jones,
What are your thoughts on including a 5α-reductase inhibitor (dutasteride etc.)to this regimen.
I have been using Saw Palmetto to lower DHT and have seen some positive results. I have not tried any ARV's yet however.
>You write that you still have still have peripheral paresthesias increased from baseline.
Paresthesia could be many things. Such as burning, prickling, itching, tingling or numbness.
Could you please tell me which of those that fits best to your paresthesia?