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Tagamet (cimetidine) for CFIDS (worked for me)

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

  1. cfs since 1998

    cfs since 1998 *****

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    That's great! I felt bad that you were getting a migraine so I didn't want to argue...if it works it doesn't really matter how...but I am happy that is clear to everyone now. Thank you so much for making the effort to make sure we are all on the same page and of course for telling us about this in the first place. As far as autoimmune, I guess it depends on the type of autoimmune condition you have, whether tagamet makes it worse or better. I don't have an autoimmune conditions and am not that well versed in them.

    Mary, thanks for letting us know about possible depression. I also recently read that it removes zinc from your body so I am taking extra. I don't think I am going to take tagamet/cimetidine on a continual basis though, probably just a month.
  2. faith.hope.love

    faith.hope.love Senior Member

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    Mary, thanks for the heads up. I definitely don't need any more depression. I'm usually a very happy, bubbly person, but I don't handle stress well. Feeing depressed would just push me over the edge!

    Ok you guys... I would like your help deciphering my lab results since I misunderstood. The interpretation on my lab report says "CD8 T cell excess." I had an Infectious Disease consult in December, and I asked him what that meant, and he said "Probably just viral activity. You definitely don't have immunodeficiency. My patients with AIDS don't have enough T cells. It's great that yours are elevated. It just means you're able to fight off infection. We don't worry about TOO MANY T-cells." Basically laughing off my concern. On the same day, I also had a neurology consult, and I asked HIM what it meant, and he said, "Probably just an overactive immune system." I phoned my Immunologist and asked HIM what it meant since he's the one who ordered the test. He replied, "It can indicate viral activity." I asked him if it meant my immune system was overactive, repeating what the other 2 doctors told me, and he said "it can" and that it is commonly seen in CFIDS, not something we worry about, we only worry when the numbers get low. He also mentioned something about numbers not mattering as much as ratios and percentages and HOW they interact with each other. Too complicated for me to understand, and he said that was very difficult to pin point. Elevated T cells don't mean much if they don't work, he said.

    So MY train of thought was -- ok, excess T cells. They say that means my immune system is overactive. I understood that my suppressor T cells were not working to shut off the inflammatory response, so my immune system was flaring out of control and reactivating latent viral infections, like the zoster. I thought the Tagamet was helping my suppressor T cells turn off the exaggerated response. I thought it was regulating the immune system, so they wouldn't keeping attacking things they weren't supposed to attack. But by YOUR understanding (which I can see clearly now), excess CD8 T cells = immunodeficiency because they won't allow the immune system to attack at all (or not enough). Your understanding makes more sense, I'm just trying to figure out where 3 well-respected specialists got that my immune system was overactive when you're saying it should be deficient. So the answer lies in the numbers. I'm going to post the results -- and believe me, I have googled incessantly and really found no answers.

    I'm going to type them exactly as they appear on my lab report -- I can't explain to you what they mean, only what I was told. (For the record, I have no clue what IMDFMR stands for.)

    CD3+ T cell # (IMDFMR) = 3195 (High) ---- [reference range 958-2388 cells/uL]
    CD4+ CD3+ T cell # = 2037 (high) ---- [reference range 533-1674 cells/uL]
    CD3+ CD8+ T cells # = 1100 (high) ---- [reference range 284-958]
    NK cell % = 8 ---- [reference range 5-25%]
    NK cell # = 304 ---- [reference range 102-565 cells/uL]

    Bottom of report reads: "Interpretation -- CD8 T cell excess. This can be observed in various clinical conditions. Clinical interpretation of lymphocyte subsets must be made with caution."

    Anyone care to explore that? I totally understand how you all were interpreting the research, and in no way am I challenging that. I guess I am just confused why my doctor said my immune system is overactive if excess CD8 (a suppressor T cell) would indicate an immunosuppressed state. By your logic, he should have said that my zoster infection kept flaring because my immune system prematurely shut down, losing its ability to suppress the infection. He told me repeatedly that my immune system was intact, there were no immundeficiency disorders, and that CFIDS can cause this type of reaction. Obviously I am going to trust my doctors at the Cleveland Clinic, I'm sure they wouldn't purposely steer me in the wrong direction -- but it still leaves me with unanswered questions.
  3. talkingfox

    talkingfox Senior Member

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    It's odd to me you'd be getting viral outbreaks at all, ever, with such High CD8... ah well ,bodies are weird.

    Update in Foxland: I went grocery shopping last nite...without a cane! :D I'm stiff, but can walk this AM as well!!
    :victory:
  4. m1she11e

    m1she11e Senior Member

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    talking fox- Do you think this might be due to the "Tagament project" or does it just happen sometimes?? Good for you either way!!!
  5. talkingfox

    talkingfox Senior Member

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    It's not happened in MONTHS. Only time will tell if it's the Tagament project or a downshifting of this last flare. I'm willing to give it time.
  6. faith.hope.love

    faith.hope.love Senior Member

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    Figured it out!

    I GOT IT!!:victory: And I was sort of right the first time, I just wasn't explaining it well because I was explaining the theory of CYTOTOXIC cells (CD8+ T cells), and then we got talking about CD8 the suppressor cell, and it was all downhill from there! I got confused with the names, but my theory was on the right track. The confusion is MY FAULT because I was erroneously TYPING CD8 for short, not realizing there was a difference in their actions. I knew what I was talking about, just couldn't convey that in a way that made sense because we were using the same names for 2 different things.

    CD8 is just one type of a suppressor cell, but the "CD8+ T cell" is a cytotoxic T-lymphocyte. Big difference!

    http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/B/B_and_Tcells.html

    "The best understood CD8+ T cells are cytotoxic T lymphocytes (CTLs). They secrete molecules that destroy the cell to which they have bound."

    "In general, the role of the CD8+ T cells is to monitor all the cells of the body, ready to destroy any that express foreign antigen fragments in their class I molecules."

    http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/C/CTL.html

    "Cytotoxic T lymphocytes are lymphocytes that kill other ("target") cells."

    "Targets may include:

    * virus-infected cells (e.g., HIV-infected CD4+ T cells)
    * cells infected with intracellular bacterial or protozoal parasites
    * allografts such as transplanted kidney, heart, lungs, etc.
    * cancer cells (The tumor-infiltrating lymphocytes, TIL, that have shown some promise in cancer therapy contain CTLs."

    "There is also evidence that CTL are active in some autoimmune disorders, e.g. help destroy the beta cells of the islets of Langerhans, leading to Type I diabetes mellitus."

    "Properties of CTLs: Most of them belong to the CD8+ subset of T cells."

    So I'll go back to my original theory, but use the correct terminology -- My CD8+ T cells are too high. They are attacking things they don't need to attack because my immune system is OVERACTIVE. It's being overstimulated. For example, I had the flu in September. My CYTOTOXIC cells attacked the flu virus, but didn't stop there. I had 4 illnesses back to back that month, including that flu, shingles, viral stomatitis, and another flu-like illness. Because once my CYTOTOXIC CELLS were activated by flu virus, they kept going. During an illness or infection, HISTAMINE is released, and histamine ACTIVATES the T SUPPRESSOR CELLS to secrete LYMPHOKINES, which are responsible for the flu-like symptoms. Lymphokines amplify the INFLAMMATORY response. If you have too many lymphokines, you will have an exaggerated inflammatory response. Lymphokines attract macrophages and other lymphocytes and ACTIVATE them to start fighting. (In MY CASE, I didn't NEED them to fight, they were targeting things they didn't need to target.) So now the immune system is in full attack mode, you have all this inflammation, and it's waking up latent infections, and you feel SICK. Your body reacts with a fever, chills, swollen lymph nodes, body aches, and FATIGUE. (Sound familiar yet?)

    T suppressor cells have H2 receptors on their cell surfaces, activated by histamine -- activated to release lymphokines, that is. Activated to CONTINUE the inflammatory response which is making you feel ill. Tagamet is an H2 BLOCKER, so it is thought that it INACTIVATES the T suppressor cell's ability to release more lymphokines, MODULATING the immune reaction.

    http://books.google.com/books?id=Finslj9ZUaoC&pg=PA196&lpg=PA196&dq=CFIDS+and+Tagamet&source=bl&ots=om0sHFh3nJ&sig=etQBV9EaF8UGY9M3P6QgkcORmLM&hl=en&ei=TY9kS5PkK4ihlAe3qJCUCg&sa=X&oi=book_result&ct=result&resnum=2&ved=0CA0Q6AEwAQ#v=onepage&q=CFIDS%20and%20Tagamet&f=false

    "Dr. Goldstein's rationale for treatment was based on the fact that Epstein Barr virus, which causes mononucleosis, is a herpesvirus and, in most herpes infections, there is an increased number of T suppressor cells. It had been recently demonstrated that the cells were activated by histamine. Dr. Goldstein reports positive results in 90% of cases of mononucleosis treated with Tagamet."

    "Although the cause of CFIDS remains undetermined, it is known there is activation of T suppressor cells, probably due to viral activity. It is believed that the H2 blockers inhibit overporduction of lymphokines responsible for some of the flu-like symptoms of CFIDS."

    You can look at it by another mechanism as well, which is where most of you are focusing, and that is inhibiting the T cells from shutting down prematurely. You're inactivating the T suppressor cells so your body can effectively fight off the infection. Either way, whether you're preventing them from shutting down too soon, or you are inhibiting the amount of lymphokines they secrete when activated by histamine -- it still works. You guys were right in your theory, and I was right in my theory, I just didn't explain it very well! In my defense, my theory is way more complicated than yours. :Retro tongue: But I knew what I meant in my head (that counts for something, right?) and bottom line -- the Tagamet works. It works in many ways, and all of them are beneficial to me. It helps my modulate my overactive immune system, and it enhances my body's ability to suppress the latent infections. I'm sold. :D

    And this also explains why you may need to be more aggressive with Tagamet if you have a weak immune system, and why I need LESS because I have an overstimulated immune system. It all comes together now. So with that being said, those with autoimmune symptoms might want to take a more conservative approach.
  7. m1she11e

    m1she11e Senior Member

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    Wow Faith! Again, thank you for the information. My head is spinning right now but I will try to read it again and see if I absorb it all. Regardless, that is great if it can help and over and under active immune system.
    It is immune modulators after all, that offer us the most promise... I believe anyway.
  8. Koan

    Koan Be the change.

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    What an exciting thread this is! Many thanks to all who are taking part and taking Tagamet.

    I'm actually happy to hear that it is not OTC here in Canada as it may mean I will be able to get it covered by my Gov. disability drug plan but I'm sorry that it complicates things for others.

    Is anyone concerned that it may make XMRV testing more tricky?

    Very exciting!

    Again, many thanks!
  9. faith.hope.love

    faith.hope.love Senior Member

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    I'm not getting tested for XMRV until it's offered at the Cleveland Clinic and covered by my insurace. I just think, for me, I would be frustrated spending all that money on a test, and then not being able to do anything with that information. There are no drugs on the market for XMRV, and the studies haven't even been confirmed yet. (Though I highly anticipate that they will be!!) I'll gladly get tested when they can DO SOMETHING about it. But right now if I have one more thing wrong with me, and I hear "sorry, there's nothing we can do" -- I will pull my hair out! :eek:

    And you're welcome for all the info. I'll never second guess myself again! I know how my own body works, even if no one else's reacts the same way. I trust my physicians to interpret my labs correctly, I'm sorry I ever doubted them.

    Btw, I just heard that Dr. Mikovits is proposing that people with POTS get tested for XMRV. So many exciting things to look forward to!
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have had similar results to you, high cd8 lymphocyte count as well as others like cd3 etc, because of my onset of cfs was viral, glandular fever and chickenpox(lymphocyte test was 5 years after onset of cfs) he thought it was probably ebv reactivating. I took antiviral famvir, this helped alot. Slowly my cd8 count came down as well as other cd numbers and my symptoms improved, after 12 months my cd8 is only just above normal but im feeling alot better, at the moment a 9 out of 10. Have taken a few breaks from famvir but within a week the fog and headaches return. I have since found a cheap source of valtrex and i take this now regularly, which i think i need too, to keep ebv supressed. In 12 months time i may try again without antivirals and see what happens. I still have some sleep problems but am back exercising lightly and playing tennis, working etc. Still have to keep on guard and if i do too much then rest up for a day or 2.
    Cheers!! hope this helps
  11. faith.hope.love

    faith.hope.love Senior Member

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    Valtrex's patent expired in December, did you you know they have a generic valacyclovir now? Much cheaper! I wonder if my doctor would let me take BOTH Famvir and valacyclovir. I know they work in similar ways, but I read that Famvir can target HHV-6 and HHV-7 (along with HSV and herpes zoster), whereas valacyclovir works mainly on EBV, HSV, and herpes zoster.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    have also read it has some affect against retroviruses and this was before all the xmrv was talked about, i ordered my av's of the net
    http://www.4rx.com/online-pharmacy/categories/herpes/generic-valacyclovir-valtrex.html
    They seem reliable and have ordered other stuff from them and all was good, no scripts needed.
    Takes about 3 weeks to get your stuff though. Famvir is also reasonably priced but valtrex is realy cheap.
    Free shipping with big orders and discounts on reorders, maybe buy something cheap first, then u can get a 10% discount on the av's.
    As for taking both, try alternating 1-2 months about and see if there's a difference.
    cheers
  13. m1she11e

    m1she11e Senior Member

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    Wow Heaps,

    You are feeling THAT well? Do you think it is mainly due to the anti virals? A doc wanted me on Famvir and insisted it does target HHV6 although most people will say it doesnt. How sick were you before? Did you go through a die off and how long did it take you to start feeling better??

    Sorry all the back to back questions! I am just trying to figure out if I want to go down the anti viral trail. Valcyte scares me to death! Famvir seems more reasonable.

    Thanks for any info!
    Michelle
  14. faith.hope.love

    faith.hope.love Senior Member

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    I've been doing some reading up on herx reactions and Tagamet, and I just wanted to throw some things out there that I read. This is all new to me, so I'm just trying to get a better understanding so I can tell the difference between a CFIDS flare and a herx reaction.

    First of all, I read that a herx reaction is most commonly associated with bacteria (usually spirochetes), and you get a "die off" reaction when the antibiotics kill off the bacteria, and your immune system reacts to the toxins that are released. I'm not really understanding how you would get a herx reaction from a viral infection because you're not killing anything, you're just stopping the replication. The viruses most commonly seen in CFIDS are with you for life. They do not die off and leave the body, they're either latent or active. If they release some toxins when they're going back into their latent state, that would make sense. I just don't see much medical evidence to back that up, and it seems that most doctors will tell you there's no such thing as a herx on antivirals. I see numerous patient reports that say they felt worse on valtrex, valcyte, or famvir before feeling better, so I am not doubting that what they feel is definitely "herx-like" -- but one has to wonder if maybe they're just adjusting to the drug itself, and the side effects diminish in time. Or perhaps there are other pathogens that the antivirals are killing, and the immune system is reacting. I just wonder how many times I experienced this in my life, and just assumed I was having a flare.

    I've done some reading about Tagamet and herx reactions, and people have reported a "herx-like" reaction due to candida overgrowth, and the dying off of gastrointestinal flora, due to the change in gastric acidity. At in higher doses, they report the same reaction when the yeast die off in large numbers. I think that's interesting about the candida overgrowth because I have to take Diflucan on a regular basis. I just assumed it was from all the antibiotics I take, but the Tagamet might be contributing. Very interesting.

    Are you guys taking any digestive supplements? I'm just taking the Culturelle probiotic with 10 billion Lactobacillus GG. (Supposedly "sticks" better than acidophilus.) I'm wondering if I should be supplementing with anything else for digestive health.

    And little update, I haven't taken the cimetidine in about 4 days. My back is starting to itch where the shingles rash usually appears, but I don't feel sick yet. My throat is burning, but it only hurts with acidic foods. I'll probably take one today and increase my valacyclovir for a couple days. I was trying to take a break so I could take some of my other medications that interact with it.
  15. Hope123

    Hope123 Senior Member

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    I haven't gone through this whole thread but have heard that Dr. Lerner uses Tagament to increase the blood level of antivirals - Valtrex - in some people. So maybe it is not the Tagamet itself but rather it's effects on the antiviral being taken. Tagament affects how the kidney processes Valtrex if I remember right.

    Also, I've had T-cell counts monitored for a while now and I am on the other side - below normal counts. I know other people in the same boat. I'm sorta skeptical of Cheney but he wrote an interesting article in the past about the range of T-cells in CFS. If you are still in your shingles flare, this may not be the best time to check T-cells as they can vary with acute events.
  16. faith.hope.love

    faith.hope.love Senior Member

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    It does increase the serum concentration of valacyclovir, which I'm sure is just another bonus for the folks who take it. But we're talking about Tagamet's direct effects on the immune system. I'm not even sure if the others are on antivirals, but I am.

    This is what drugs.com had to say about the interaction:

    "Cimetidine may increase the serum concentration of acyclovir. The mechanism is competitive inhibition of the renal tubular secretion of acyclovir. Initial dosage adjustments usually are not necessary. Patients should, however, be monitored for acyclovir-related toxicities. Also, cimetidine reduces the rate at which valacyclovir is converted to acyclovir. The extent of conversion is unaffected, and this interaction is not considered to be clinically significant."
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    on lerners scale i was a 5 or 6, I can recall being on holidays and walking to the beach with my wife and kids, 10 mtrs down the road i had to stop and sit on a bench, i was out of breath, nauseas etc. we didnt stay long on the beach because my wife could see i was sick, i didnt leave the bench just watched from a distance. That was a moment that i really hated cfs that i can really remember, a man in my early thirties and my wife and kids had a dad in there 80s, most of that holiday i spent in bed while the family holidayed i was just wasted but was feeling so guilty for just lying there. I was working part time some how, because i had too, but would come home wiped out. I would work 2-3 days a week and spend 3-4 in bed. I was very up and down for the first few years then was just down, 3 years ago i meet a doc who was knowlegable about cfs and would consider what treatment i wanted to try. He sent me for a lymphocyte subset test which showed the elevated cd8, which is a common occurance with ebv, i suggest antivirals too him from what i read on these boards, which he obligued, the rest is history. Had no die off, it took a few months to realise it was working, i noticed i wasnt crashing as much, then brain fog started to clear. aroung 6 months i crashed again but i think i was doing too much, had a couple of small crashes where i would feel unwell for a few days then back on track. It took a good 12 months to feel better, like i mentioned earlier my lymphocyte cd8 is still just above normal range but alot lower then originally. Still have some sleep issues and my joints feel alittle rusty and remembering names is so imbarrassing, but my energy is better and more stable, no brain fog unless really over do it. But have to stay on antivirals if i want to stay like this, which i will, every so often will stop av's and see how i go.

    cheers!
  18. faith.hope.love

    faith.hope.love Senior Member

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    If this discussion continues, can a moderator please split the thread and start a new one for viral load? I'd like to keep my thread specific to Tagamet treatment. I think we got off course and opened a whole new can of worms here. It's only fair to those who are following that we stay on topic. Thanks!
  19. Robin

    Robin Guest

    I moved the posts to a thread called "Viral Load".
    http://forums.aboutmecfs.org/showthread.php?2771-Viral-Load

    I'm impressed with how civil this discussion is, let's keep it that way!
  20. cfs since 1998

    cfs since 1998 *****

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    update on my tagamet trial

    I haven't "herxed" too much the past few days, but I think I'm going to discontinue this because it's been messing up my sleep too much and I think it is doing something to my HPA axis. Oh well, I might decide to take it in pulses every now and then.

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