Ali stopped Lexiva also. After two weeks, she hadn’t experienced any benefit. The only thing she noticed, besides a little GI upset, was a very minor CNS effect, which she experienced as similar to “a little too much Cymbalta”. I am SSRI intolerant and had a similar experience, though it wasn’t subtle and took a week to clear. Very strange. No obvious explanation.
There is of course no way to know if taking it for longer would have made a difference for Ali, but with so little to go on, continuing without clear benefit didn’t seem like a good idea. Someday we will look back on our Lexiva trial and understand the biology of what happened. For now, we have three drugs that have been shown to be effective in vitro, in more than one study: AZT, tenofovir and raltegravir. Three drugs work for HIV. So we’ll stay the course. We are tremendously better, though recovery is so far incomplete.
>Thank you for letting us know about the Lexiva. You and Ali are trailblazers, and I appreciate you letting us know what works for you and what does not.
Patricia Carter
http://www.mecfsforums.com
>While intolerance for antidepressants is common with ME/CFS, I believe SSRI intolerance has special significance. Because of the severity of the associated depression, I have been on a wide range of antidepressants in all classes. Every SSRI was a major problem, which might distinguish ME/CFS from primary depression in a psychiatric context.
>I also have intolerance to SSRIs. The only kind of antidepressant I can tolerate is the old tricyclic type. I was told they were originally used as allergy medication before their antidepressant effect was noted and they began being prescribed for antidepressant use. This may explain why they help relieve some of the ME symptoms.
>This comment doesn't exactly follow the thread of the antidepressant discussion, but I am eager to share my treatment experience. I was notified at the end of September that I was positive for XMRV. Since then, I have been unable to locate a doc who will prescribe HIV antivirals for me. Actually, I'm having trouble finding a doc who will even see me! With a dual liability of long term Lyme and CFS, it is easy to speculate that they don't want to get involved with a psychiatrically impaired woman. :>)
In mid-August because I had tested positive for other viruses, i.e., cytomegalo and herpes, I was started on Valtrex. I have just completed two months on it. I noted some improved functionality, activity tolerance, and improved mood from early in Valtrex treatment.
In early October, I moved from my summer home to my winter residence and experienced a great exacerbation in symptoms — back to the recliner with a book for two plus weeks. I attributed my decline to PEM from the move.
One week ago, it became clear I was hyperthyroid, secondary to an increase in my dose in early August. My dose was cut back by last Tuesday. Since that time I have experienced an exponential improvement in functional capacity. I now think I was getting on going improvement from the Valtrex during early October that was being masked by hyperthyroid symptoms, increase pulse, pounding heart rate, brain fog, fatigue.
It is, of course, early in my improvement, but I am thrilled to be released from my status as an unburied corpse for even a short time and eager to share my experience in a ME/CFS world where most of the news is bad.
My history of Lyme began in 2000 while hiking the Appalachian Trail. Since then, I have walked a classic chronic Lyme trail while gradually becoming more and more functional. Last October, my thyroid was changed from Armour to a T4 only product when Armour for unknown reasons was taken off the market. In December I experienced classic hypothyroid symptoms.
On New Year's day I went for a Polar Dip on the coast of Maine then went to work 3 – 11 in my part-time job as a psych nurse. And felt great! I worked the 2nd, 3rd and 4th, and crashed within the next few days. It took until July until I was diagnosed with ME/CFS. I am a relative newbie in the ME/CFS world which may be relevant to my Valtrex response.
I recognize that correlation does not equate to causation, but since all of us following Jamie and Ali are on uncharted medical territory, I thought it important to share this information.
>So does anyone know more about the SSRI intolerance link with CFS? I know for a fact that prior to my illness I was tried on a number or SSRI's usually in conjunction with Wellbutrin for a depression that was associated with going undiagnosed with hypothyroidism for a long period of time. I had no problem with any of the SSRI's and stopped taking them because of not really needing them any longer.
Since CFS I am intolerant of SSRI's and have experienced an identical serotonin toxicity reaction after 3 small doses each of both xoloft and cymbalta. Basically I developed a severe headache, tachycardia, very high blood pressure necessitating having to leave work and having difficulty driving home.
I was tried on a number of different medications for the fatigue (pre CFS dx) and only lamictal worked somewhat for ~ 8 months until I developed an entirely different constellation of adverse effects with it and had to quit taking it.
One other medication I was tried on was a low dose of lithium to try and improve mood. I had a very severe reaction to this which required being taken to the ER by ambulance. This was after 8 days and a dose increase on the 8th day.This was like the serotonin(SRRI) reactions X 50! All other symptoms plus profuse sweating and rigors requiring sedation ultimately. I later found out that lithium causes a direct serotonin release.
I have heard that in general CFS and possibly GSW patients have "seratonergic issues". Is this something that anyone can elaborate on more? Has anything been published on this? I suspect this might be associated with a certain subset, but I suppose it is possible that it could be an across the board issue.
It does seem that it could be used as a biomarker and/or to differentiate from strict psychiatric illness?
>Hi, have had CFS for just over 3 and a half years now and live in England, United Kingdom. If you think treatment in the States is bad, then you should come over here!
There is no help on the NHS (National Health Service – free public health care). The new government is trying to get everyone off sickness benefits – including me!!
My wonderful private Doctor, who was treating me, has been 'struck off', for daring to treat the patients that the whole of the rest of the medical profession ignores.
I have had my blood sent to the lab in Reno for testing for XMRV. I am awaiting the results. The country I live in may be backwards when it comes to treating this disease but I am foreward-thinking like yourselves.
Thank you for this blog. You are both very brave and people all over the world are grateful for what you are doing. It needs to be done and it needs to be done now!!
I am 36 years old with three children aged 8,6 and 4 years and a great husband. I was a teacher previously (7-11 years olds) but now can't work.
We deserve to reclaim what we can of our lives and we need treatment to do it. Show them it's a possibility Jamie and Ali!! Keep up the fight – we are right behind you!!
Michelle.
>On anti-depressants, I've found that sertraline has helped somewhat. I've been on it 4 months andn worked up very slowly to 100mg, starting at 12.5mg. It has improved my malaise, headaches and appetite.
>In this video, at 7:45, Ila Singh shows a list of protease inhibitors and says that none of them work. Fosamprenavir/Lexiva/Telzir is not on the list, but Amprenavir is. Lexiva is a prodrug version of Amprenavir, but I dont know what that means in this context.
http://www.youtube.com/watch?v=ZmEGz8sG7tA