• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. faith.hope.love

    Tagamet (cimetidine) for CFIDS (worked for me)

    I took the 200mg tab once a day, no side effects.
  2. faith.hope.love

    Tagamet (cimetidine) for CFIDS (worked for me)

    Hi merylg! It's been a long time since I logged into this place, and what perfect timing. I'm having a relapse of some sort and nobody knows what's going on!! It started out with hives and itching around Thanksgiving, then a petechial rash. I tried to ignore it until the beginning of January...
  3. faith.hope.love

    benzo withdrawal mimics CFS

    Hi, this thread is over a year old! I just received notification of replies. Regarding the melatonin, I tried it one time and it made me nauseated, so it went in the trash. About the link, it just sent me to the main page. If you have specific questions, please send me a direct message. Thanks!
  4. faith.hope.love

    Tagamet (cimetidine) for CFIDS (worked for me)

    Yes, I had abnormal immunologic testing, and I still have an overactive immune system. It's a Lupus-like syndrome, but whether it's related to withdrawal, or the drugs, or an actual autoimmune disease, I will never know. Considering I'm not able to get off the drugs without having seizures, I...
  5. faith.hope.love

    Tagamet (cimetidine) for CFIDS (worked for me)

    Right. In my case, this "syndrome" was CREATED by prescribing multiple different drugs for many years. If I had never been prescribed anything, I would be healthy today. I'll be healthy soon, getting better every day now that we know what is wrong.
  6. faith.hope.love

    Tagamet (cimetidine) for CFIDS (worked for me)

    Hello! I don't post here anymore since I don't have CFS, but I am notified when someone posts on this thread. I hope the cimetidine helps you. I still take it because it potentiates my Valium and keeps it in my system longer to prevent withdrawal symptoms (which I used to believe was CFS). I am...
  7. faith.hope.love

    Tagamet (cimetidine) for CFIDS (worked for me)

    Sorry, I am just now seeing this. I was originally put on Wellbutrin and later Provigil for fatigue post-mono. I was later diagnosed with hypothyroidism, so a lot of my fatigue resolved once that was properly treated. I still relied on the stimulants because I worked night shift, and they helped...
  8. faith.hope.love

    Tagamet (cimetidine) for CFIDS (worked for me)

    It still helps me by the same mechanism. I still have the same problems as everyone else, I just know what caused mine.
  9. faith.hope.love

    Tagamet (cimetidine) for CFIDS (worked for me)

    In long term male users, it has been known to cause gynecomastia, but it was reversible when the drug was stopped, and I think they were on high doses. Really 200mg per day was effective for me. I'm sure that's enough to scare away most males from trying it, but a 2 week trial period probably...
  10. faith.hope.love

    Tagamet (cimetidine) for CFIDS (worked for me)

    I have not been on Wellbutrin since probably the last time I posted about it. As you can see, I started this thread in January 2010, so about a year and a half ago. I've been through a lot since then. I'm sure being on Wellbutrin and Provigil contributed to the lowered seizure threshold. You...
  11. faith.hope.love

    Tagamet (cimetidine) for CFIDS (worked for me)

    My problem turned out to never be CFIDS at all. I was in benzo withdrawal, and just didn't know it. The only reason I "recovered" in April 2010 is because I restarted the evil drug (Ativan) that caused it in the first place. My mystery illness returned when I stopped the Ativan this past March...
  12. faith.hope.love

    Do you get fevers? Ever?

    I get low grade fevers almost every single day. But it's not related to CFIDS, it's related to benzo withdrawal. (See my thread for a thorough explanation.) I was fine before the Ativan. Be mindful of the drugs you take, there are plenty of side effects and withdrawal effects that mimic CFIDS.
  13. faith.hope.love

    Gilberts Sydrome and increased bilirubin. Do you have it?

    Yes, they're always high. My doctor first mentioned Gilbert's in 2004. It's never been an issue since it's a benign condition. It definitely has not caused an impaired immune response in me. My immune system is very overactive, it's TOO strong. Sometimes I have to take steroids to suppress it. I...
  14. faith.hope.love

    benzo withdrawal mimics CFS

    Thank you! I will look into it. I'm just afraid to try any supplements at the moment. It makes it hard to distinguish where side effects are coming from. I also bought some melatonin, but I've been afraid to try that too. This whole experience has left me pretty gun-shy to taking anything at...
  15. faith.hope.love

    benzo withdrawal mimics CFS

    Thanks, heapsreal, that's exactly what I did (cut down to 2.5mg at bedtime), and that was working fairly well unless I overexerted myself. Anything that gets my adrenalin pumping seems to throw my immune system into overdrive and the withdrawal symptoms intensify. So someone on a benzo forum...
  16. faith.hope.love

    Gilberts Sydrome and increased bilirubin. Do you have it?

    Yes, I have that too. Very few people know what I'm talking about, so I never even mention it to my doctors!
  17. faith.hope.love

    benzo withdrawal mimics CFS

    Thanks! Doing MUCH better this week. My doctor started me on Valium 5mg, which is equal to 0.5mg Ativan. I took my first dose yesterday morning. I think it was a bit much for me, I was very groggy and slept 10 hours. (Though I needed that sleep! First good sleep I've had in a long time.) It's...
  18. faith.hope.love

    benzo withdrawal mimics CFS

    Thanks! I haven't started the Valium yet. I see my doctor again on Wed. He actually recommended Klonopin, but I'd prefer the Valium, so I have to ask for it, and see if he agrees. It's not as potent, and it lasts longer than Klonopin (clonazepam). I've read that this is the easiest way. I'll let...
  19. faith.hope.love

    benzo withdrawal mimics CFS

    More thoughts on this: Another reason I don't feel that I ever had CFIDS to begin with, I have always slept well, a solid 8 hours per day. Supposedly with people with CFIDS do not feel refreshed with sleep; I did. I used to sleep like a rock. I only asked for the Ativan to help me sleep...
  20. faith.hope.love

    benzo withdrawal mimics CFS

    Thanks. It's not going very well, but this is just the first week. I still have plenty of chances to make changes in my weaning schedule. I think I'm going to replace the Ativan with Valium because it has a longer half-life, and it sort of eases the withdrawal from Ativan (which is...
  21. faith.hope.love

    Weight Loss or Weight Gain?

    I gain and lose about 20 lbs every year. But I don't think it's necessarily "caused" by this disease. I just like to eat, and I'm too tired/sick to exercise. As soon as the scale hits a number that I don't like, the dieting begins. Low carb/high protein works well for me. I usually get sicker...
  22. faith.hope.love

    benzo withdrawal mimics CFS

    For any of you taking benzodiazepines to help you rest, take great care in realizing which symptoms are related to withdrawal, and which symptoms are due to your CFS. For at least a year, I have been experiencing Ativan withdrawal, but never made the connection until recently. I was diagnosed...
  23. faith.hope.love

    Autoimmune screen

    Well since I didn't have the Lupus anticoagulants or anticardiolipin, and my kidneys were fine, they felt it wasn't Lupus "at this time." They couldn't rule it out, but they didn't have sufficient evidence to say "yes" I have it. I don't have any skin rashes either. I've had something like the...
  24. faith.hope.love

    Celebrex & Inflammation

    Sorry to drag up an old thread, but I wanted to address something. If you have a sulfa allergy and take Celebrex, that could cause a flare. Celebrex contains a derivative of sulfa. I've been taking Celebrex for years, and never associated it with an "allergy" because sulfa just makes me itch...
  25. faith.hope.love

    Your voice quality-- do you often get hoarse or are you unable to speak?

    How coincidental to find this, as I was just noticing that my voice has been hoarse (on & off) lately. I think mine is just due to the generalized "raw throat" that we get. It usually gets worse later in the day as the fatigue really sets in. I have environmental allergies and very mild asthma...
  26. faith.hope.love

    Anyone Else get ill after exposure to sunlight - not just the heat

    I'm sorry I missed your reply! I always forget to check my posts. I used to get a shingles flare every time I was in the sun for too long, but not so much now that I'm taking medication for it. (Cimetidine and valacyclovir.) Shingles causes the worse symptoms of any other illness I've had, by...
  27. faith.hope.love

    butterfly rash

    Thanks for all the replies and information, everyone. Lately I've been trying to distinguish the differences between CFIDS and Lupus, and I'm not really having much luck because they overlap so much. You can see increased T cells and low NK cell function in BOTH conditions. I do have a positive...
  28. faith.hope.love

    Skin burning

    I had recurrent shingles with horrible post-herpetic neuralgia and hypersensitive skin ALL OVER, and it completely went away with cimetidine + valacyclovir. I have a thread on here about that, but it's super long. Bottom line though, it works very well...
  29. faith.hope.love

    Autoimmune screen

    I'm curious too. My ANA was 1:320. I think my symptoms are more Lupus-like than CFIDS, but I don't have organ involvement (yet), so they felt more likely CFIDS. I wouldn't be surprised if later on down the road, I get a Lupus diagnosis. My knees (and sometimes muscles) swell when I flare, and I...
  30. faith.hope.love

    Anyone Else get ill after exposure to sunlight - not just the heat

    I flare in sunlight because herpes viruses flare in UV exposure. I have recurrent shingles (herpes zoster). Also if you get a sunburn, you ignite the inflammatory response, and that makes people feel ill too. It's no coincidence that people with MS and Lupus also flare in sunlight. They're all...