Back in January a member of the PR forums started a thread about cimetidine, commonly known by its brand name Tagamet (yes, the "acid reducer", technically an H2 antagonist). Cimetidine actually has some interesting properties that have sometimes been useful in the treatment in CFS. In fact Dr. Jay Goldstein used it in his practice in the 80s and 90s to treat CFS after finding it useful in infectious mononucleosis. It was also commonly used used for the treatment of Shingles (herpes zoster virus). All of these uses have been largely forgotten over the years, particularly when acyclovir came on the scene.
It works as an immune modulator apparently by inhibiting a particular type of T-cell that is overactive in CFS and chronic viral infections. However some research has shown that it may have direct antiviral effects as well, anti-retroviral in fact.
Here is a published study about its anti-HIV effects. The authors state that cimetidine was found to be even more effective at inhibiting HIV than AZT. Other H2 antagonists were not as effective. Although the full text of the paper is not available for free, the authors wrote about some of their findings in patents and other places. Unfortunately I could not find if they tested cimetidine against murine retroviruses too (MLVs, the viruses related to XMRV), so whether they would also inhibit XMRV is anyone's guess.
However, back in January I and several members did decide to do a two week trial of cimetidine (I should have wrote it about it here but I wrote about it on the forum instead). The reactions of all of us were similar to each other and similar to the reaction I had when I first started olive leaf extract. We all went though headaches and increased neurological symptoms lasting up to a week, and a period of lethargy and hypersomnolence lasting several days, which is also what I went through when I started OLE. I had jaw spasms for a few days again as well. These symptoms are either some kind of herxheimer or immune reconstitution inflammatory reaction, and eventually went away. I stopped the cimetidine after two weeks as I am not comfortable taking it for long periods of time, and only set out to take it for 2 weeks in the first place. This is because the side effect profile isn't too great: disrupted sleep (which was probably the biggest reason I stopped it), and, over the long term, dysregulating androgenic hormones (a concern particularly for men). Cimetidine also suffers from having drug interactions with practically everyone, but luckily I'm not taking any drugs (though hopefully it is not unluckily reacting with my supplements). I also wasn't sure there was any point in continuing to take it when my "herxing" had stopped after a little over a week...though I guess it could still be working even if I'm not having those particular symptoms.
So that was 6 months ago. In an attempt to try to move along my treatment while waiting patiently, or not so patiently, for the WPI and other researchers and the drug companies to study the big guns and find a real treatment, I've decided to do another two week trial of cimetidine. I already started Tuesday night. I am taking 200mg, twice a day (400mg per day total). Anyway, I may decide to do this as a "pulsing" treatment, perhaps something like 2 weeks on, 4 to 6 weeks off. I suppose that if it really is an antiviral, there could be a chance at developing resistance this way, but I am not too concerned about developing a strain of virus that is resistant to cimetidine.
By Thursday evening the headaches have set in. As I've discussed before, these headaches associated with the start of antiviral treatments aren't ordinary headaches. They are continue over the course of several days (weeks the first time I had them) and are a different type of pain than a regular headache. It doesn't hurt too bad just sitting here at my computer typing and keeping my head still, but the more I move my head the worse it gets. I have to walk "smoothly" and if I drove somewhere, be very vigilant of potholes. It is more of an inflamed brain feeling, and in fact the symptoms are just like encephalitis but are not fatal (I guess that's why they used to call ME/CFS "benign myalgic encephalomyelitis").
Anyway I will keep the blog updated but I suspect the pattern will be the same that I expect: headaches for a few days, hypersomnia a few days, and then back to baseline.
There are some other drugs that have been found to inhibit MuLVs and might inhibit XMRV, such as doxycycline and minocycline. I might incoporate that into my pulsing protocol in the future--taking cimetidine and doxycycline daily or twice daily for two weeks at a time. I'm also thinking of going back on isoprinosine/Immunovir.
---
Maybe I should write a little about how my treatment has been going overall. I actually feel better mentally, and do not require as much sleep as I used to for an equivalent amount of energy. But my physical condition is as bad as ever. My orthostatic intolerance has worsened slightly, and over the past two weeks I've been having episodes of numbness in my hands (which is not surprising because I have mild carpal tunnel from using the computer too much) but also my feet. It actually took my awhile to realize it...my feet kept falling asleep whenever I was driving my car, but then it got worse. Lately, I am finding wearing shoes for any length of time intolerable let alone walking in them, and sometimes when I'm sitting or just laying in bed, not crossing my legs or pinching any nerves or blood vessels or antying, my feet will just go numb for no apparent reason--complete with pins and needles and a very slight burning sensation. It's quite an odd symptom and I don't know how to explain why it is occurring, but hope it does not get worse.
The holy basil continues to help my sleep (which is made worse by the Vitamin C I'm taking--the two counteract each other in the anxiety department), though it wears off after 5-7 hours, so if I take it before bed I sometimes wake up a couple hours too early. But I've gone through this before and can deal with it for the time being. I can tell you one surprise benefit of my current treatment...my "tachycardia at rest" which I had quite frequently before starting the (natural) antiviral/immune modulator approach has diminished to almost nonexistent. I used to wake up in the middle of the night with my heart absolutely pounding and that no longer happens, or is probably one tenth as bad as before.
So to summarize the past year and a half:
mental energy: somewhat improved
physical energy: same
orthostatic intolerance: slightly worse
tachycardia/heart pounding: tremendously improved
everything else: same
(I apologize for any mistakes as it's 4am and I'm just going to post this and go to bed without proofreading as carefully as I normally would)
I hope you'll keep posting about how the cimetidine does. I tried it once, but it did not do anything for me. I have the numb hands, with burning, that you mentioned. I've heard it is due to inflammation and lots of people with ME/CFS get it. I have also recently started getting a new kind of headaches, and the only thing different is that I am increasing vitamin B-12. These headaches are definitely different from the tension headaches I'm used to, but I had not connected them to inflammation or physical movement and jolts. Thanks for writing this. Since you are letting people know what works for you and what doesn't, you are helping others avoid some dead ends.
ReplyDeletePatricia