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Tagamet (cimetidine) for CFIDS (worked for me)

Discussion in 'General Treatment' started by faith.hope.love, Jan 3, 2010.

  1. faith.hope.love

    faith.hope.love Senior Member

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    Tagamet (cimetidine)

    http://books.google.com/books?id=VtHlTVfToiQC&pg=PA196&lpg=PA196&dq=Tagamet+and+Chronic+Fatigue+Syndrome&source=bl&ots=G9BEFYa_7z&sig=OUvOZ-6ZCJS3-ZkcTAt7YZwPH7c&hl=en&ei=k59AS7HjE86PlAfY46WnDg&sa=X&oi=book_result&ct=result&resnum=3&ved=0CBAQ6AEwAg#v=onepage&q=Tagamet%20and%20Chronic%20Fatigue%20Syndrome&f=false

    http://www.lef.org/magazine/mag2001/mar2001_report_tagamet_1.html

    I've been taking it for about a month, and I am 90% recovered after a very long, painful relapse. I'm not cured by any means, but I'm functional and able to return to work. Just be careful because it interacts with many other medications. If you're going to try it, you MUST check drug interactions first. Especially Wellbutrin. (I learned that the hard way - nausea, vomiting, vertigo, and racing heart.) It can interfere with the absorption of many drugs, either increasing or decreasing their effectiveness. So please just be careful if you decide to try it.

    Good luck!
  2. maryb

    maryb iherb code TAK122

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    Its amazing how different we are isn't it within the same illness. Your post emphasises how the levels of stomach acid are so important to our well being and if corrected can produce really positive results. I was originally diagnosed with GORD when I first became ill (pre ME diagnosis), prescribed all sorts of acid reducing meds by an NHS consultant, none of which agreed with me. Some years later a test via a private doctor showed I had very LOW stomach acid (one of the lowest the lab had seen) this was treated with Betaine HCI which I take occasionally now if I feel I need it.
  3. Terri

    Terri Guest

    Are you saying that Tagamet has helped with your CFS issues (fatigue, pain, brain fog)? This drug is generally used for acid/heartburn problems. Did your doctor give an explanation for why they use this drug to treat CFS?
  4. m1she11e

    m1she11e Senior Member

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    I am confused at how Tagament could help CFS? I have recently develped GERD and after much research decided not to do antacids. Like Mary, Many people with heartburn are actually low in Bectaine HCI. I decided to go that route instead.

    I was wondering if there was some other way Tagement was treating CFS???
  5. faith.hope.love

    faith.hope.love Senior Member

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    Did anyone read the links that I posted? I thought those articles gave a very thorough explanation. It's not about reducing stomach acid, that's just what Tagamet is most commonly used for. I'd explain it myself, but it would be much easier for you to read the articles, they're very informative.
  6. dsdmom

    dsdmom Senior Member

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    Very interesting - thank you for sharing!
  7. faith.hope.love

    faith.hope.love Senior Member

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    Just to explain my situation in more detail (but you MUST read the links I posted in order to understand how Tagamet helps CFIDS. I will post them again in case you missed my first post.

    http://books.google.com/books?id=VtHlTVfToiQC&pg=PA196&lpg=PA196&dq=Tagamet+and+Chronic+Fatigue+Syndrome&source=bl&ots=G9BEFYa_7z&sig=OUvOZ-6ZCJS3-ZkcTAt7YZwPH7c&hl=en&ei=k59AS7HjE86PlAfY46WnDg&sa=X&oi=book_result&ct=result&resnum=3&ved=0CBAQ6AEwAg#v=onepage&q=Tagamet%20and%20Chronic%20Fatigue%20Syndrome&f=false

    http://www.lef.org/magazine/mag2001/mar2001_report_tagamet_1.html

    I've had CFIDS for well over a decade. My most recent relapse started in August. The following 4 months, I had fevers, night sweats, chills, sore throat, swollen glands, canker sores, tongue lesions, migraines, numbness and tingling of my arms and legs, body aches, swollen joints (knees), recurrent shingles, and extreme fatigue. I took a few courses of antibiotics, and improved each time, but the illness would return within DAYS of being off the antibiotics. I missed most of the last 4 months of work. I went to 5 different doctors, no one could find anything, yet they didn't look very hard either. Once you have the diagnosis of CFIDS/POTS, they don't look for any other causes. Finally an Immunologist checked my white blood cells more carefully, and found that my T-cells (CD3, CD4, CD8) were elevated, but that just indicates an overactive immune system and viral activity. No treatment was given. I saw my family doctor, and asked for another round of doxycyline, this time I took it twice a day for 2 weeks. The sore throat and knee swelling went away, but the fevers and night sweats persisted for a while, and I could feel the shingles about to flare up again. The doxy left me with terrible gastritis and reflux despite the fact that I've been on Nexium, so I recently started taking Tagamet. All my remaining symptoms disappeared, and the shingles never came back.

    That was an incidental finding. I chose Tagamet because it also helps with the symptoms of PCOS (polycystic ovarian syndrome), which I also have. In my research of Tagamet for that reason, I came across this on Tagamet's Wiki page: http://en.wikipedia.org/wiki/Tagamet

    "In some studies, cimetidine has been found to reduce the debilitating pain and symptoms of herpes zoster, presumably by blocking the H2-receptors of T-lymphocyte suppressor cells."

    That caught my attention because obviously I had herpes zoster, and an elevation of my T-cells. I googled some more... and found the above articles. It's an "old school" treatment for CFIDS. And it worked for me. I KNOW the doxycycline is what took away the sore throat and joint pain, but the Tagamet is what kept the viral illnesses at bay. I had been flaring non-stop for 4 months, and now I'm fine. I return to work tomorrow.
  8. Robin

    Robin Guest

    Hi faith.hope.love

    That's interesting! I was on ranitidine for years for acid reflux, but, it didn't have any affect on my CFS symptoms, unfortunately. Eventually I had to move onto omeprazole!

    I looked further into pubmed; cimetidine increases NKC activity in mice, and in small studies has been shown to shorten duration of herpes zoster and genital warts. Dr. Goldstein's observations are interesting but I would think a larger study would be needed to confirm them.

    It seems like cimetidine might beneficial to those suffering from the HHV coinfections. That's a good caution about checking drug interactions; the site I read noted that cimetidine can affect the absorption of birth control pills, so be careful!
  9. faith.hope.love

    faith.hope.love Senior Member

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    Yeah Ranitidine isn't as effective. I'm not talking about stomach acid, GERD, or gastritis, I'm talking about its effect on herpes viruses. I know this is really confusing because people read "Tagamet" and their brains go to heartburn. It really does have many other off label uses.

    Regarding birth control pills, I'm actually infertile. I only take them for PCOS (to prevent ovarian cysts), and so far Yasmin combined with Tagamet has been a dream cure for me. No cysts, no acne, no hair loss, and my breasts grew/swelled a cup size in one month. I love this stuff. :)
  10. Robin

    Robin Guest

    Yes, I understood that, I just wanted to share that I had quite a few years on a related med and fwiw it didn't help w/ CFS! But, different things work for different people. It might be worth trying the Tagemet.
  11. andreamarie

    andreamarie Senior Member

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    They didn't help me

    I was on H2 blockers for years and they didn't help my CFIDS. Previously, my urologist tried them for interstitial cystitis. But they are available OTC if one would want to try them.
  12. m1she11e

    m1she11e Senior Member

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    Faith.love-
    Are you still seeing results with the Tagament? I did not read your links the first time...sorry. That is very interesting!

    Now, I understand that this is a whole different thing, and not using it to deal with GERD, etc. BUT, does anyone know if you could supplement with HCL while on something like Tagament (to treat virus/immune issues) so that you stomach still has acid to digest foods? I just dont want to cut off my nose despite my face. I know those acids are important. I do like the idea of trying Tagament as part of my anti- viral, immune stimulating arsenal though.

    Michelle
  13. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    anti-androgen

    Sounds right as Cimetidine is known to be an anti-androgen

    Competition of the Histamine H2 Antagonist Cimetidine for Androgen Binding Sites in Man
    http://www.andrologyjournal.org/cgi/content/abstract/1/3/111

    Peace,
    S
  14. Denn

    Denn Guest

    Dear faith.hope.love--

    Thanks for posting your positive response to Cimetidine. I have been taking Zantac off and on for several years now (switching it with Pescid for GERD). Just recently, I began taking Zantac exclusively and consistently (owing to finding a large bottle on sale at the drug store ;) While it certainly has not eliminated my CFS symptoms, I was noticing just lately that I was experiencing a consistent lessening of the intensity of some of them. I had not thought that the Zantac might be responsible, but the timing is consistent with the relative lessening of my symptoms. It will be interesting to see if it continues to be of benefit...

    Thanks!
    Denn
  15. Andrew

    Andrew Senior Member

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    Hi faith.hope.love.

    That's exciting news! I'm so happy for you. Thanks for sharing this,

    I read the link you posted, and found it interesting that this is one of Goldstein's treatments. He was known for coming up with things that work quickly.
  16. faith.hope.love

    faith.hope.love Senior Member

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    Yes, I know, that's why I take it. :Retro smile: When I said "I only take them for PCOS" -- I meant because it is an anti-androgen medication prescribed for PCOS. Women with PCOS have excess androgens. I also take it to help my gastritis, but only when absolutely necessary because I already take Nexium twice a day.

    I'm just curious if other H2 Blockers (Pepcid, Zantac) would work on EBV and other herpes viruses the same way. I think I'm going to try Pepcid for a while, and see if it helps. The Tagamet interacts with too many of my other medications, so I can't take it every day. It's still working well for me though, I hate to make any changes. I normally would have had a flare by now because I've had a very rough week - lots of physical exertion and very little sleep, lots of heavy stress since I just started a new job this week. Any other time, I'd have flu-like symptoms by now. My CFIDS flares are very distinct -- they always start out the same way: multiple canker sores, an ulcerated sore throat, generalized malaise, extreme fatigue, and a fever. (Then it's all downhill from there!) I've had none of that since starting the Tagamet, yet I had it continuously for 4 months prior to the Tagamet. It has to be helping.

    There are many illnesses in the herpesvirus family that are common in people with CFIDS, (EBV, CMV, HHV6, HSV, herpes zoster, etc.) and that is what the Tagamet is treating. (Or rather, the T-cells, which are increased in those viral infections and reactivations.) So if you've never had those viruses, it's not going to do anything for you. (I've had almost all of them.) I firmly believe that the overactive immune system in CFIDS (or possibly XMRV itself) is what keeps those viruses "awake." If your T-cells are too high (like mine), your immune system doesn't know when to "turn off." The immune system can't regulate itself, so it's going to keep waking up dormant viruses, and that in itself is the definition of CFIDS to me. I have no name for my illness if it's not. I can't list "high T-cells that are waking up old herpetic infections over and over" on my FMLA forms, so my doctors call it CFIDS. If I'm wrong, then I'll be happy to say I'm wrong. But if any one of you are like me -- try the H2 blocker. It's worth a shot! :Retro smile: (Unless you're a guy, then be careful because the anti-androgen properties could make your breasts grow.)
  17. faith.hope.love

    faith.hope.love Senior Member

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    Hi Michelle! I'm not sure how Tagamet would affect your digestion if your stomach acid levels are already normal or low. I've been taking Nexium 40mg twice a day for years, and supplementing with Tagamet, and occasionally I have Tums too. (I have chronic gastritis and GERD from NSAID use.) I've never had a problem with digestion related to any of these medications. I don't think I have excess acid without the meds either, it's just that I just took too much ibuprofen that damaged the lining of my stomach, so I have to take medication to prevent ulcers. I had reflux from the doxycycline, (which is why I started taking additional meds) but normally I don't have an excess acid problem. I would be more afraid of HCL supplements than the H2 blockers, but my circumstances are so different. I'm curious now too! Actually, I see my GI specialist on the 27th. I will ask him and let you know!
  18. faith.hope.love

    faith.hope.love Senior Member

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    One more word of caution -- don't mix Tagamet with Provigil!! I had Tagamet + Provigil + caffeine, and ended up with heart arrhythmias and "hypertonia." Basically my calf muscle swelled up and got hard and tight like a muscle spasm, only it didn't hurt. I had a very long work up for DVT/PE, and was sent home after those tests were negative. I didn't realize it was from the medication till I stopped it. I had the swollen calf for about 3 days, then it went away after discontinuing the Provigil. I've had many problems with Provigil in the past, and swore I'd never take it again, but I was falling asleep in class, and desperate to stay awake. I only took half a tab (100mg) but when combined with Tagamet and caffeine, that intensified the side effects. Just a forewarning because I know a lot of us use Provigil. I might have to discontinue the Tagamet and try another H2 blocker because I've just had too many drug interactions. I'm lucky it was just a swollen calf muscle this time, and not my heart exploding.
  19. m1she11e

    m1she11e Senior Member

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    I have been doing research and it looks to me that the other antacids would not have the same effect. It would have to be the ingredient Cimetidine, which of course is just Tagament. Maybe the other H2 blockers would work but they are not mentioned as having the immune modulating and anti viral effects.

    I have been finding alot of info on Cimetidine. Thank you for your post!
  20. cfs since 1998

    cfs since 1998 *****

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    This is very interesting, thank you so much for posting. I just might try this.

    I did some searching and Tagamet (I use the brand name because its easier for me to spell, lol) is mentioned as a possible CFS treatment on this page, section 14. It says it helps the immune system overcome Th1 suppression, "by blocking the histamine H2 receptors on cells of the immune system that the pathogens use to fool the immune system" -- and indeed Dr. Cheney has mentioned that various pathogens such as herpes viruses fool the immune system and cause it to shift to the Th2 side. I also found a lot of people using Tagamet for warts, which is interesting because they are also caused by viruses. They it takes about six weeks to have an effect on them.

    And in addition to herpes viruses, looks like it might work for retroviruses too (especially relevant considering the XMRV discovery)...I found this article, AIDS therapy from cheap generics, with bold added by me:
    "Cimetidine first came to the attention of Bourinbaiar and Jirathitikal when they observed the inhibition of human T-cell leukemia virus (HTLV-1) secretion from chronically infected cells. This led them to the idea that viral release is regulated in the same way as gastric acid secretion. They discovered that cimetidine has broad antiretroviral activity. Further studies revealed that cimetidine, unlike AZT, which was used as a control, produced no cytotoxicity even at the highest dose tested (1mM). According to the researchers, this is an exceptional drug index that cannot be matched by any drugs currently used in the treatment of HIV/AIDS. Twice-daily doses of 200 mg of cimetidine provide steady IC50 levels (concentration producing 50% inhibition) for HIV replication."
    Also:
    Use of cimetidine for the control of retrovirus infections
    -- 1996 U.S. Patent. Includes the interesting assertion: "Cimetidine appears to be as efficient as AZT...[but] is not toxic."​

    Completed Clinical Trial
    -- to study effects of cimetidine on HIV infection (results not known)​

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