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Tagamet (cimetidine) for CFIDS (worked for me)

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

  1. Marco

    Marco Old blackguard

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    Just to reiterate the warning to the guys in the forum. I was taking Tagamet and then Zantac for 3-4 years in the early 1990s for upper gastro pain and suddenly developed all the signs of the 'male menopause/viropause' which made all my existing symptoms much worse and added a few more. Testosterone tanked from 25nmol/l in 1986 to less than 10nmol/l in 1996.

    Cimetedine in known to produce changes, possibly irreversable, to the sertoli cells in the testes. Gynecomastia is a known side effect.
  2. faith.hope.love

    faith.hope.love Senior Member

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    Marco, I think that's why it isn't used very much. Not only because it interacts with so many drugs, but for the reasons you stated. I know that could really decrease the quality of life for a man! The drug works great for me because I'm a woman and I have ovarian disease, but I think I'm going to limit its use to acute flares. It interacts with my Claritin-D, my muscle relaxants, my COFFEE for God's sake -- it increases the effects of caffeine. I've been having issues with low blood sugar also, but I don't know if that's related to the Tagamet. (I'm also dieting, so maybe I'm just not eating enough.)

    cfs since 1998 -- great find! I think it's a very powerful drug that doesn't get the attention it deserves. You just have to be very careful with it!

    To all the men, I think if you take it short term, like during an acute illness, you might get the benefits without the scary side effects. It should be safe in small doses for short periods of time, but check with your doc. Here's an article about the gynecomastia side effects: http://gerd.emedtv.com/cimetidine/cimetidine-and-gynecomastia.html
  3. cfs since 1998

    cfs since 1998 *****

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    Thanks for this information. Can you tell me what dose you were on? The patent recommends 200mg, three to four times per day (every 6 to 8 hours).

    Speaking of androgenic effects, I saw this article which says that it competes for DHT, and Dr. Luckett wrote on his blog that DHT increases XMRV replication three fold, so that is intereting.

    I agree. I am thinking about trying it, but maybe I will only take it at night. That way I still have acid to digest my food during the day.

    That patent says, "A similar, but significantly weaker effect was observed with two other H2 antagonists, ranitidine and famotidine" (zantac and pepcid). Maybe you could try Tagamet for a few weeks and see if that helps even more.
  4. faith.hope.love

    faith.hope.love Senior Member

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    There was another article that said even very small doses can help tremendously. I'll see if I can find it!
  5. Marco

    Marco Old blackguard

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    "Thanks for this information. Can you tell me what dose you were on? The patent recommends 200mg, three to four times per day (every 6 to 8 hours)."

    Sorry. I can't remember the exact dosage - it was a standard GP prescription and I think it was two per day or whenever needed.

    I do remember that I really depended on it while I was taking it (ignorant of the potential side effects of course) and wouldn't leave home without my tablets. It seemed to also help my bowel problems and well as the upper gastro pain.

    I was then transferred onto Zantac and found it much less effective and eventually stopped taking them altogether when the stomach pain seemed to disappear.
  6. talkingfox

    talkingfox Senior Member

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    Wow. I mean just wow. Not only anti-viral but anti retro-viral as well??? And useful for PCOS????

    I was impressed with the studies for HIV that showed the difference in the anemia in AZT patients (70%) vs. Tagamet (2.3 in 100,000)

    I think I'm going to give this a shot.

    I wonder why this hasn't been followed up on more by Drs. and whatnot. Maybe because the patent has expired? :innocent1:
  7. m1she11e

    m1she11e Senior Member

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    I just started taking it yesterday. Im not starting at the higher dosing that most of the studies suggest yet. I want to see how my body responds.

    "The plan" is to take it 400mg at night before bed and then to take 200 mg first thing in the AM about an hour or so before I eat. I read some where that acid is what kills most any good probiotic off so I thought I would take my probiotics at this time too. Some doctors even recommend taking antacids with probiotics so they stand a chance of survival. The other 200 mg dose I will have to find a way to fit in. I am also taking my digestive enzymes with hydrochloric acid with all of my meals. I know these H2 blockers cant block all the stomach acid or there wouldnt be the new bigger better RX ones out there. Hopefully supplementing will the HCL will help too.

    It seems like it is certainly worth a try. Thanks again for the info!

    Michelle
  8. faith.hope.love

    faith.hope.love Senior Member

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    For what it's worth, I was taking 200mg about every other day (sometimes more, sometimes less), and I felt great. I had my moments, but they were just moments -- not hours, days, weeks, or months of misery like the past.
  9. talkingfox

    talkingfox Senior Member

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    OMG...my DH just reminded me of something that my fuzzy brain had forgotten.

    A few years back I was having some serious GI issues and my Gastro guy put me on Tagamet for 6 months or so. Then I quit eating gluten and *Kapow* I was in near total remission (functioning at 80-90% a majority of the time, flares were small and short) for quite some time.

    Given the anti viral/anti retroviral effect this stuff seems to have for many it makes perfect sense. HaH! this may be the 'missing link' that I was looking for in my own protocols. I couldn't for the life of me figure out what I was doing differently.

    Definitely worthy of a personal replication study :D
  10. Marco

    Marco Old blackguard

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  11. WOW. Just... WOW.
    Thanks for posting this link Marco! It got me very excited.
    Thank you again...

    Rachel xx
  12. talkingfox

    talkingfox Senior Member

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    hiya faith.hope.love.

    I discussed all this with my new Rheum. Doc today and he thinks we should give it a shot, although he's more an FM guy than a CFS guy. Wonderful thing is, he's open minded and actually listens.


    I was wondering if you had any sort of herx when you started with the Tagamet?
  13. faith.hope.love

    faith.hope.love Senior Member

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    I had to look up "herx" to see what you were talking about... No, I don't think I experienced anything like that. I gradually felt better and stronger. It didn't cure me, but it has definitely improved my quality of life. I'm starting to flare right now due to severe emotional distress, and the Tagamet really seems like it lessens the blow. I'm getting low grade fevers, and I can feel the recurrent shingles flaring up. My neck/shoulder muscles are very tight and sore, which means I'll have severe migraines for a few days. But I'm hoping the Tagamet will shorten the duration and lessen the severity of this flare. *fingers crossed*

    PS: Ironically my stress is due to the fact that my employer found out about my illness and wants me fired. I've cried so much, my face is burnt from my tears!
  14. talkingfox

    talkingfox Senior Member

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    Oh, I'm so very sorry you're having to go through this. :(
    I hope it gets resolved soon, in your favor and that you get to feeling better.

    I hear you on the not cured thing too. I've had pretty substantial remissions in the past, but never to 100%.

    But hey...I'll take better when and where I can get it.
  15. m1she11e

    m1she11e Senior Member

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    Faith- So sorry about our employer. If being sick is not enough stress!!!

    Talking Fox- You asked about a "herx" and I have been wonderng the same thing. When I "tried" Valcyte for HHV6, I gave up after about 14 pills because I felt so awful. I was afraid it was the Vaclyte hurting me since it is such a dangerous drug.

    I started the Tagament about 5 days ago. Wednesday night I slept really deep (usually have trouble sleeping, cannot sleep in and it doesnt matter how tired I am) and I woke up at 10. I usually cant sleep past 7:30. When I woke up I felt drugged and slept off an on through out the day. I wouldnt even call it a bad thing. Normally I am tired and cant sleep. I was just OUT. Last night same thing. I also had major night sweats (which I do get off and on normally).

    I just woke up from a nap too. That is when I actually came on in here to see if anyone had started the Tagament and mentioned any "herx" or die off reactions. I dont see why this wouldnt cause some degree of die off it was stimulating the immune system to kill off the virus'. Im not ready to call my two day coma a herx but it has not happened to me before and it did coincide with starting the Tagament. It has actually felt really good to sleep so hard. Id rather sleep like that than be exhausted but anxious and unable to sleep.

    I am taking 800 mg a day. I think Faith only took 200 mg a day or every other day so that may be why she never felt a die off?????

    Im giving the Tagament a month. I dont like putting drugs in my body unless they are doing something worthwhile. Most of the research spoke of people feeling better within the first few weeks. I too will take better wherever I can get it!!!
  16. talkingfox

    talkingfox Senior Member

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    I'm taking about half of what you are, m1shelle. I figure if I need to I can go up with dosage but want to give a lower dosage a chance first. I'm also going to give it a month, then stop to see if there's a difference. If there is a difference I'll just fold it into regular protocols. I started yesterday and I slept not very long (4 hours) but well. Could be a coincidence. I'll just see if it repeats. And yeah, I'm feeling distinctly nappish right about now and I never nap. Ever.
    I'm going to wait though...don't want to miss Dr. Judy's presentation!

    I'm also noticing just in 24 hours that I'm getting little psoriasis plaques starting, which for me is a pretty good barometer that something is going on in the ol' immune system. I often get them in conjunction with flares as well.

    I had a positive effect on my CFS flares from Valtrex (which I was taking for HSV1) but it was ripping my guts up something fierce. I'm really hoping that this is a less toxic option.
  17. cfs since 1998

    cfs since 1998 *****

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    faith.hope.love, I am very sorry to hear about your situation. What a horrible blow.

    I started Tagamet Monday night. I am taking 300mg before bed and 100mg in the day time, 12 hours later. I don't want to take too much in the day time since I still want to digest my food. Anyway, the night time dose is causing me to have some anxiety/heart pounding when trying to sleep. I do eventually fall asleep and my sleep seems deeper yet also very fragmented, I wake up a lot and fall back asleep again.

    I feel *exactly* the same way, and I mean *exactly*. Very groggy feeling, almost like I took an excess of sleeping pills (but did not take any at all). Also had major night sweats, the worst I have ever had. Is it a herx? I have no idea. I did have the same groggy tiredness about 4 days after I started olive leaf extract, and it lasted about two or three days (and when I raised the dose, the same pattern repeated again another two times). In fact, I believe I started OLE on a Monday and the grogginess started on a Thursday and lasted until Saturday, which is exactly the same pattern as I (we) am (are) seeing with Tagamet. OLE gave me what I strongly believe was a huge herx--in addition to the groggy tiredness I also had extreme headaches and some additional strange symptoms, but OLE did not give me anxiety or night sweats. So the Tagamet reaction might be a herx since there are some similarities, or might not be, since there are some differences.

    Me too.
  18. cfs since 1998

    cfs since 1998 *****

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    This is off topic, but olive leaf extract really did a number on my gut too. I have found a great way to control this side-effect. What I do is take a dose of olive leaf extract, wait an hour, then take a high dose probiotic. Then I wait another hour to eat. The cycle repeats for my second meal of the day - olive leaf, wait, probiotic, wait, eat. I only eat two meals/day though. I have the timing and rhythm really down now. Also Dr. Martin Lerner's patent says that people who have digestive disturbances with valtrex, he switches to famvir. So I hope one of those two things will help you :Retro smile:
  19. cfs since 1998

    cfs since 1998 *****

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    My "drugged, groggy" exacerbation of fatigue has improved slightly, although I'm not yet back at my "CFS baseline" energy level. If it follows the same pattern as when I started OLE, it should be gone by Sunday or Monday. I hope this is a sign the Tagamet is working and is not a red herring or side-effect.
  20. m1she11e

    m1she11e Senior Member

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    CFS since- I was checking for your update. I felt less drugged yesterday but still slept really hard and alot. Last night I slept 12 hours and only got up once. That is unheard of for me. I do feel very groggy so far this morning. Like I said, yesterday was a little better. I think today is gonna be a couch day. It isnt an awful, sick, anxious tired like I got with Valcyte. Just very groggy. I get numbness in the right side of my face and right leg too. Strong anti virals always bring it on with a bang so I stop regardless of the docs advice that it is a good sign. My facial numbness is pretty severe now too. Im not ready to back off yet though.

    Of course I am not sure what is going on here. Im not saying it is the Tagament or a herx or a good or bad thing. Something is certainly happening though. Cant say I mind all the deep sleep....

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