Tagamet (cimetidine) for CFIDS (worked for me)

[julius]

CFS Since,

I want to mention LDN again. Not because I think you should try LDN, but because the theoretical mode of action may shed some light on why Tagamet may work in lower doses.

Here's a quick summary.

1) endorphins play an important role in immune system.

2) naltrexone blocks endorphin receptors

3) while those receptors are blocked, naturally produced endorphins are able to 'build up'.

4) in higher doses, naltrexone continues to block those receptors and the natural endorphins are unable to 'do their job'. (leading to the opposite effect, and a worsening of symptoms)

5) with a lower dose, the naltrexone is cleared of the body long before the next dose, allowing endorphins to bind with receptors and exert their influence on the immune system.

If you take the basic ideas of this theory and apply them to Tagamet, you might see that a lower dose is worth a try.

I have used simple language here, I'm just trying to get the basic point across.

 

[m1she11e]

I used LDN about 12 years ago. It was big back then but I didnt notice anything one way or the other. It amazes me what a come back it has made. Are people getting improvements in general now from it? It is funny how these things cycle in and out.

Guess we just keep trying...

CFS since- I stopped the Tagament too. I never really like shutting down the stomach acid since so much of the immune system resides in the gut. That HCL is so important.
I started really having sleep issues too. I didnt think it was the Tagament but then I read you post. Maybe?

 

[julius]

I'll try this one more time.

I'm not suggesting you use LDN. I'm suggesting you try using Tagamet at lower doses and illustrating why it might work based on the LDN theory.

Tagamet acts in a similar way, in that it is a receptor antagonist.

English is my first language and I think I am using it properly. I don't know why you guys keep thinking I'm saying try LDN when clearly that's not what I'm saying. Geez.

 

[m1she11e]

Understood Julius, and I was just mentioning that I am amazed and how much I am seeing about LDN again. I was also just wondering how it was working for folks.

All is good here...

 

[faith.hope.love]

Hey guys! Sorry to hear you guys weren't tolerating the Tagamet. I've been off it for about a week now, I think? Lost track. I'm on Avelox for a sinus infection, and didn't want to take them at the same time. I just had my first full blown fever/night sweat last night, but otherwise I feel fine. Now that I've learned what "herx" is, I have no idea if that's from the Avelox or from CFIDS! I'm gonna take a Tagamet today though, because once those night sweats start, they don't quit for weeks. I'm really gonna try to go back to work soon. I'll have to try to stay on my feet for 12 hours as a "dry run" and see if I can handle it before trying to work again.

 

[talkingfox]

I'm still on the tagamet and I'm doing very well. the nerve pain in my legs is way down So far no digestive or depression issues either. As a matter of fact my digestion seems to have improved and my intestinal tract has settled down a bit. I still seem to be getting some break through EBV feeling stuff (sore lymph nodes, body aches etc) but I'm starting to get breaks between. I'm going to push on for the full 4-6 weeks my doctor suggested and then stop to see if it is indeed the Tagamet that's responsible for the improvement.

 

[m1she11e]

Great news Talking Fox! You are so lucky to have a good doctor to guide you through this!

 

[faith.hope.love]

I'm still on the tagamet and I'm doing very well. the nerve pain in my legs is way down So far no digestive or depression issues either. As a matter of fact my digestion seems to have improved and my intestinal tract has settled down a bit. I still seem to be getting some break through EBV feeling stuff (sore lymph nodes, body aches etc) but I'm starting to get breaks between. I'm going to push on for the full 4-6 weeks my doctor suggested and then stop to see if it is indeed the Tagamet that's responsible for the improvement.

That makes me so happy to hear!! Yes, the relief from the nerve pain is the best part. I haven't noticed any changes in my digestion either. My throat is burning from NOT taking it though! I took one last night, and will probably resume after I'm finished with my Avelox in a couple days. I go back to the doctor today, she will be glad to hear of the progress I've made. She's probably wondering why I've been unusually quiet lately.

 

[talkingfox]

Great news Talking Fox! You are so lucky to have a good doctor to guide you through this!

I dunno if he's a GOOD doctor yet, but he's pretty much given me my head as far as treatment options I want to experiment with. As a semi-professional butthead I can get behind that...:Retro wink:

 

[faith.hope.love]

Update on my progress -- I was NOT doing well without the Tagamet. I'm still having fevers and night sweats, my heart is racing, I'm feeling pretty achey, and getting weird headaches unlike my usual migraines. My throat is a little sore too. I was off the Tagamet for about a week, and I've been back on it for 2 days. I'm hoping the fevers will get under control after a few more days of Tagamet. I'm seeing a cardiologist on Tues for the racing heart, palpitations, shortness of breath, weakness, swollen legs, and freezing cold blue feet. (That's been going on for about a month now.) Possibly developed myocarditis after my series of viral illnesses the past few months. Tagamet MAY even help that because you see an increased number of CD8+ T cells with myocarditis. (Maybe that's why they were elevated in the first place!) I read that they sometimes use Tagamet to control the increased T-cell activity in myocarditis. It's self-limiting, and treated with NSAIDs. People usually get better on their own in a few months. I'm hoping that's it because it means I will get better, and I will be able to work again. If it's not myocarditis, then I'm just stuck with worsening POTS/CFIDS, and who knows when I'll be able to work again.

 

[talkingfox]

I'm sorry you're feeling poorly, faith. Hopefully the Tagemet will get things back under control.

 

[Robin]

I'm seeing a cardiologist on Tues for the racing heart, palpitations, shortness of breath, weakness, swollen legs, and freezing cold blue feet. (That's been going on for about a month now.) Possibly developed myocarditis after my series of viral illnesses the past few months.

Are you still on the Avelox? I had a horrible time with that -- mostly a racing heart and a feeling of being totally stoned (but not in a good way!) Quinolone antibiotics can cause cardiac issues so if you were having that before them before, it might be making it worse!

 

[faith.hope.love]

Are you still on the Avelox? I had a horrible time with that -- mostly a racing heart and a feeling of being totally stoned (but not in a good way!) Quinolone antibiotics can cause cardiac issues so if you were having that before them before, it might be making it worse!

No, this started months before the Avelox, but yeah I read about that side effect, which is why I was avoiding the Tagamet that week. I didn't want to take anything that might increase side effects! I have POTS so I always have a racing heart to some degree, but it has just gotten worse since I came down with all these viral illnesses (back-to-back) this past fall. Plus my legs are swelling, that's unusual for me. My feet started turning blue in January, but I figured it was Raynaud's, or something related to my hypothyroidism. Now I'm wondering if it's poor circulation. It could be nothing -- all these viruses have probably just aggravated my POTS. I have no idea, my doctors have no idea. It's very, very frustrating.

Btw, my throat now has ulcers on it, my lymph nodes are swelling, and I'm having a LOT of trouble swallowing. Pills get stuck in my throat, scratch it on the way down, and that triggers canker sores to form. I'm miserable. I hope this Tagamet kicks in soon.

 

[faith.hope.love]

Just another little update! Been back on Tagamet for about 5 days now. Feeling MUCH better than my last post. My throat is better, no swollen glands, no shingles recurrence, no weird headaches. Nearly back to my baseline. Looks like I'll need to stay on Tagamet long term! Saw a cardiologist today, that didn't really get me anywhere. I'll have an echocardiogram though, and that should rule out any heart involvement. He took me off Corgard (nadolol) 10mg, and put me on Toprol XL 25mg -- supposed to be better for people with asthma. Maybe my beta blocker was causing my shortness of breath. He also thinks the nadolol was causing my fatigue, but I'm PRETTY SURE my fatigue is from CFIDS and viral illnesses. Anyway, I'm improving. So yay!

 

[IntuneJune]

Wow, a lot of info here.....my fuzzy thinking makes reasoning so difficult here....I want to reread this when at least I am no longer on Vicodin which I am taking post surgery Monday.

Is there a way to mark a thread we want to come back to at a later time. Because I will forget that too.

Thanks June

 

[jackie]

Just had my apt. with my I.D. Doc (been at 3200mg. daily acyclovir - me/cfs, chronic enteroviruses/chronic shingles)...he has started me on Tagamet 2x daily!...along with continuing acyclovir.

The test will be to see if the shingles and accompanying severe headache just go away! If this works I will need to stay on the Tagamet for 6-12 months at least. IF I can eventually get the shingles under control, I can add a mini-dose of immune-modulator such as Equilibrant and possibly begin to SLOWLY titrate down in AV dosage! I wish!

I also tested over 3 times lower than the LOWEST reference range of Vit. D...so will also be starting Vit D3 (3,000 ui per day - closely monitored by labs/doc)). Know this is all new stuff and one more "experiment" but I am so hopeful (especially after reading of your experiences FaithHopeLove!) The first "hope" I've had in many years (I was about to give up...)

BTW...I have extremely high (6.6) C-reactive Protein...and many Neurological problems including Neuropathy/severe cog./Memory etc.

Thanks guys, for starting and contributing to this important thread!

jackie:Retro smile:

 

[jackie]

I've read and re-read this entire thread THREE times and now I'm REALLY getting excited!

ALSO...my Doc said yes, I'm considered immuno-compromised (not sure what that really means other than he said this because my shingles are on BOTH sides of my body at once...shouldn't cross the meridian, I think???)

Hope this means that I'll do well with the Tagamet!

Wish me luck...I start today! (Tagamet today...D3 next week, I guess?)


j

 

[faith.hope.love]

Jackie, that is WONDERFUL news! I think it will be very helpful to you. Please keep us posted on your progress.

About your Vit D3 levels -- I've heard that people have CFS symptoms when it's low. Let us know how you feel on your supplement! I should start taking mine again too.

And yeah you usually don't see shingles cross the spine because it follows a dermatome. Like one nerve pathway. If yours is affecting 2 nerve pathways, he's right -- you're definitely immunocompromised. That must be incredibly painful, I'm so sorry to hear that. I am so excited for you to try the tagamet! I hope it works. What dose are you going to take? I'm still on 200mg daily, and no outbreaks yet. Fingers crossed for you!

 

[talkingfox]

I really hope this has some benefit for you Jackie! I know it certainly has made a difference for me in only 3 weeks
My doc wants me to stop taking it in another week to test out whether it's the Tagamet doing the job or whether it's just a flare easing up on its own. I'm not sure I want to stop, considering

Please keep us posted Jackie. I really hope that you get the same sort of dramatic improvement that I've experienced

 

[jackie]

Thank you, F.H.L....going to call you "hope" today! My husband just picked up my script..."Cimetidine" 400mg. 2x daily (generaic for Tagamet)

I really can't express how hopeful I am...It's been such a long, hard road with the Antivirals..and with a high dose (AND being told I'd likely need to be on them for life - although perhaps at a lower dosage)...so disheartening to NEVER have the Shingles go away - year after year...not to mention the weird and horrific headaches! But this will change my life, if it works.

I've forgotten what it feels like to have enough energy to get out of and STAY out of bed!...maybe cook a meal...fold my laundry? Forgotten what "NO PAIN" feels like!...or not waking up in the middle of the night with those headaches!? Fingers crossed, too!:victory::victory:

Also...I asked Dr. Chia if "Zantac" would be just as good...and He said NO!...must be Tagamet (or equivalent Generic)...for shingles, any way.

As for the Vit D levels the reference range for optimal health is 32.0 - 100.0. mine is 11. I just started up with a new Primary care doc...and he tested this the other day...and was very concerned. I do know that my levels were normal two years ago...but I'm going to pull my records to see just when my numbers began to get wonky - did this happen all at once? or gradually? I'll certainly keep you posted as to any difference I notice. It may be significant over time...but doc did say at my particular level it could take a year at least to get up to the lowest normal value. I'm going to add 20 min. per day(10 min.early am/10 min. late afternoon) sitting on the deck exposing myself! (I pity my neighbors!)

Note: Also...I found it interesting (and disturbing) that in spring of 2007 my C-reactive Protein, Cardiac # was 1.61, in sept of 2007 it was 3.01, in mar 2009 5.7, oct 2009 5.9 and last week it had climbed to 6.66! The "safe" range (by my lab, anyway) is 0.00 - 3.00. "relative risk for a future Cardiovascular event" is: Low=<1.00./ Average=1.00-3.00. High=>3.00. for what that is worth! Many labs show slightly different ranges, however. ("CRP" is a marker for inflammatory processes/certain diseases)

jackie:Retro wink: Oh...just saw you Talking Fox! Thanks so much for the good wishes! ....and congrats, yourself! Please post when you stop/re-start. For me, it should be easy to determine if it's working...Doc said the Shingles (which are ALWAYS present)...will simply GO!