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.
>We need funded clinical trials of antiretroviral drugs on XMRV positive patients, and we need them now. Your experience is giving many of us hope, but until clinical trials are done, these hopes go unfulfilled. I agree with you: it is an outrage that there's a chance to study something that could actually control te underlying cause of the disease and instead money is being spent to find out again what we already know.
Patricia Carter
http://www.mecfsforums.com
October 13, 2010 7:29 PM
>Dr. Deckoff-Jones- I very much appreciate your report of neuropsychiatric responses to this antiretroviral. Intriguing that AIDS patients don't have on the same neuropsychiatric reaction to the drug. It is suggestive of the speculations that Mikovits has made that the virus seems tailored to infect and integrate into neural tissue including the brain. Many of the symptoms of CFS/ME could be from this involvement. Depression, fatigue, anxiety, autonomic dysregulation, brain fog, chemical sensitivity, and other classic symptoms all could be accounted for by brain involvement of the virus. Ali, due to having had the virus less time, might have less widespread involvement of multiple tissue reservoirs accounting for her lack of such reaction.
This also means that trying to kill a virus which has become integrated into brain cell is going to create havoc in the brain, so be careful please! We need you and your thoughtful, smart brain… intact!
>Jamie, thanks again for your lucidity and clarity of thought as well as your courage, not just in taking these meds, but in speaking truth to power.
Good point about the neuropsychiatric effects of this disease. My impression is that that subject is more talked about with Lyme and Bartonella patients, but not with ME/CFS patients. For myself, I've certainly cycled in and out of depression secondary to the ME/CFS symptoms. I think anyone who doesn't get depressed with this disease is probably psychotic . . . or doesn't really have it. But anti depressants do make it tolerable for me and on them it's easier for me to take pleasure from life within the limits imposed by the disease. . . up to a point. A day in bed when I can't even read is hard to take much pleasure in although I try to enjoy the new mattress I bought two years ago :-)
Somatoform Disorder as it's defined doesn't even make logical sense; its definition is circular and I believe it entered the DSM as a political compromise to appease docs who wanted to keep hysterical conversion disorders in it. I once saw a doctor who tried to convince me that I had a Dissociative Personality Disorder. I almost tore his head off . . . . but didn't have the energy, so just lectured him on how every one has one personality disorder or another and it's independent of whether one is sick or not. After all, one can be schizophrenic and have cancer; bi-polar and have asthma; and, indeed, one can have Major Depression and develop ME/CFS, or cancer, or whatever . . . One can even be an old fashioned hypochrondriac and get ME/CFS!
michael
>The Valcyte clinical trial has been going on for a few years at Stanford by Dr. Jose Montoya of Stanford Hospital. The initial small sample trail results seemed great until that later data seemed that there was not much improvement in the patient set.
http://www.vicd.info/
I have read a few places that Dr. Montoya is actually working on the XMRV front so it will be interesting to see if he shifts focus.
>What I've experienced myself and seen in other people moving from severe ME/CFS to recovery through other routes is that due to the profound debilitation, severely ill patients may not manifest any overt emotional symptoms. The emotions in many cases seem to just get turned off, most of the time.
As people move more toward wellness (e.g. by getting out of a bad environment, detoxing and addressing pathogens), the emotions come back to life again. And that's when dysfunctional stuff – irritability, anger, depression, sensitivity to slights, obsessions, paranoia – pops up.
Close to full wellness, the emotional stuff recedes. But it takes a whole lot of gains before that happens.
It will be interesting to see if this is your and Ali's experience, or that of other people who move toward wellness using antiretrovirals.
Thanks for the report on your progress.
Best, Lisa
>Dear Jamie, thank you so much for being an open book for all of us. I envy your access to drugs. Here in Canada, I can't even get Imunovir prescribed (it is off-label for CFS due to lack of replication studies) which was recommended by Nancy Klimas.
I would like to command your bravery in being a pioneer.
As for psychiatric illness, I believe I have PTSD since the time I got ill, or very closely, from when my work place thought I was faking my illness, to dealing with disability insurance process, to dealing with doctors that seem to be in it for the lifestyle, and easy cases rather than being stimulated by making a real difference in the life of their patients.
Again, thank you for all you do.
>I kow not all pts have responded well, but many benefit from B12 injections, specifically w. regard to brain. I have had excellent benefit from it, including emotional stability, although focus, organization, concentration and memory are the main things it helps with. To me, using it is like wrapping my brain in cotton. MAybe you could use it along w. the P.I
>Well, here's a talk by Dr. Stein: http://www.meao-cfs.on.ca/events-past.html . She talks about the difference between ME/CFS and psychiatric disease. She's a psychiatrist and has ME herself. I found it healing.
If that doesn't work, you can always kill your psychiatrists, too .. figuratively.
>The 2011 Physician's Round Table conferece is being held from Jan 27-30, 2011, Virgina Beach, VA. http://lymebook.com/vogan-blog/
The last conference produced a research study (biofilms). Dr. Mikovits, as well as others, will be presenting at the 2011 PRT. Might prove worthy if a research project was outlined and talked about at the round table. Vendors are open to projects, as well as physicians, labs, etc.
>I think the trial Dr. D-J is referring to is not the Montoya trial but the Dr. Lerner trial. He announced that he had received an NIH grant.
Also, HIV reservoirs have been found in microglial cells in the brain, so I doubt that the neuropsychiatric differences are due to location differences of the two viruses, but rather to character differences and/or immunological differences. Neuropeptide Y being overactivated in CFS may have something to do with this
>"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."
Too many drugs, all with their own side effect profiles; whole body systems multiply affected; body required to handle, adapt to, and detoxify exogenous drugs, hormones, "supplements", ad infinitum. Doesn't have to be proof of concept, imo.
>I am so grateful for the information and support I am gaining from tuning into Jamie and Ali and the other contributors I find here. A newbie in the Me world, I have a lot to learn. I am finding ME to be a very lonely disease. An extrovert from the get-go and a single woman who lives alone, I am finding social isolation to be one of the myriad of challenges I am coping with.
Another challenge I've been confronting this month is all the pink I'm finding in magazines and television ads. I find myself with breast cancer envy — wishing that my disease garnered all the support and resources that would be extended to me if I had breast cancer. I moved into the XMRV club one month ago and have yet to find a doctor who will take pen in hand and transform me into a lab mouse. Neither of my treating doctors have gone beyond giving me a name and a phone number for me to find a physician. Would I be expected to find my own breast surgeon?
I've now remembered that breast cancer got the enormous flow of cash and support when women demanded it. I also remember that the barbaric childbirth practices I witnessed as a student nurse changed only when women demanded changes. My resolve for the day is to become more demanding.
Would I rather be a demanding lab mouse than a passive compliant patient — who lives as an unburied corpse? I've already lost my life, the one where I was an active, productive, and happy participant. As I see it, life as a lab mouse offers possibilities that more of what I've been doing for 10 months does.
>What Rita said resonated with me greatly. I am tired of Safeway clerks asking me if I want to give money for breast cancer. No, I said today, they have plenty of money. And I am saying that with my mom dying of breast cancer, just in case someone think I'm heartless.
It is time that the "wealth" within the government funds are spread a bit more evenly, and ME/CFS has a lot of catching up to do!!!
Just think that the Chilean government gave 10-12 millions to rescue 33 miners down a mine. So I ask our governments, from all the countries: How much effort and money will you give to rescue millions of patients that have been neglected and left for dead for decades?
They can pretend they don't have the money- I don't believe them. Just see how a cancer patient or an HIV patient is treated these days ?
This is a case of discrimination.