Pepcid and 1 month without an 'episode'

[julienl]

By taking Pepcid I've had the first month free of an episode in years. I still have cfs (and with it pem, ibs, pots etc), however for the first time in years I've gone a month without an 'episode' (where I feel like I have the flu and have to sleep for between 3 days to three weeks). Without Pepcid I often have episodes lasting two to three days long (sometimes with only a day or two in between episodes). Up until now, 80 percent of episodes last two to three days, 10 percent of episodes go on about a week, and 7 percent go on two weeks. The longest I had was three weeks of only getting up to pee, hardly eating and dizzy when I do get up, and feeling awful like I have the flu. So I am very thankful for having found Pepcid. I say one month because I just came out of a two day episode. I will track and update the post next month where hopefully I found the same effects!

I posted this on another forum and was asked 'awesome! pepcid is a h2 histamin blocker for the stomach?',
to which I replied 'Hi! It is believed Pepcid helps those with cfs as an h2 histamine antagonist, which may give credence to the mast cell activation theorist camp, or at least to those with a subset of cfs experiencing mass cell activation.

H2 receptors are positively coupled to adenylate cyclase, which stimulates the production of cAMP, which then activates protein kinase A (PKA, which also has been singled out as problematic in a lot of cfs research

I have tried hundreds of different supplements, pills, and therapies and only two things have helped, Kratom of the green malay variety and Pepcid. I detail it all on my cfs info page but any time I put a link to the site in a post it gets blocked. Please reply with specific questions, I will do my best to answer and I hope this helps. Thanks, J'

 

[Aidan Walsh]

By taking Pepcid I've had the first month free of an episode in years. I still have cfs (and with it pem, ibs, pots etc), however for the first time in years I've gone a month without an 'episode' (where I feel like I have the flu and have to sleep for between 3 days to three weeks). Without Pepcid I often have episodes lasting two to three days long (sometimes with only a day or two in between episodes). Up until now, 80 percent of episodes last two to three days, 10 percent of episodes go on about a week, and 7 percent go on two weeks. The longest I had was three weeks of only getting up to pee, hardly eating and dizzy when I do get up, and feeling awful like I have the flu. So I am very thankful for having found Pepcid. I say one month because I just came out of a two day episode. I will track and update the post next month where hopefully I found the same effects!

I posted this on another forum and was asked 'awesome! pepcid is a h2 histamin blocker for the stomach?',
to which I replied 'Hi! It is believed Pepcid helps those with cfs as an h2 histamine antagonist, which may give credence to the mast cell activation theorist camp, or at least to those with a subset of cfs experiencing mass cell activation.

H2 receptors are positively coupled to adenylate cyclase, which stimulates the production of cAMP, which then activates protein kinase A (PKA, which also has been singled out as problematic in a lot of cfs research

I have tried hundreds of different supplements, pills, and therapies and only two things have helped, Kratom of the green malay variety and Pepcid. I detail it all on my cfs info page but any time I put a link to the site in a post it gets blocked. Please reply with specific questions, I will do my best to answer and I hope this helps. Thanks, J'

@julienl It may be working also on lactic acid reduction or even with D-lactate acid. Lactic Acid is also involved in gene MT-ND5 Mitochondria Disease linked to MT-ND4 gene (LHON) Leber Hereditary Optic Neuropathy I have both genes plus Alport Syndrome. Which dose brand did you purchase on Pepcid? Was it a prescription or ever the counter?

 

[julienl]

@julienl It may be working also on lactic acid reduction or even with D-lactate acid. Lactic Acid is also involved in gene MT-ND5 Mitochondria Disease linked to MT-ND4 gene (LHON) Leber Hereditary Optic Neuropathy I have both genes plus Alport Syndrome. Which dose brand did you purchase on Pepcid? Was it a prescription or ever the counter?

@Aidan Walsh These are excellent clues! I will switch back to the generic brand and see if that helps, as that's what I was on for the first 2 successful weeks!!
It's been two weeks since the post and while I haven't had outright episodes, I've slept most of the time since writing it. I'm extremely frustrated. Perhaps it will be more effective at higher doses or taken intermittently, I will experiment. I am certain it has helped and not just as a placebo, as I try many things without expectations. I've tried perhaps 300 supplements medicines and therapies so I would know a placebo effect when I saw it

 

[Aidan Walsh]

@Aidan Walsh These are excellent clues! I will switch back to the generic brand and see if that helps, as that's what I was on for the first 2 successful weeks!!
It's been two weeks since the post and while I haven't had outright episodes, I've slept most of the time since writing it. I'm extremely frustrated. Perhaps it will be more effective at higher doses or taken intermittently, I will experiment. I am certain it has helped and not just as a placebo, as I try many things without expectations. I've tried perhaps 300 supplements medicines and therapies so I would know a placebo effect when I saw it

I used also Allevia 24 hours 120 mg was about £14.00 for 30 days it is an allergy medicine I take at night I think also used in Polen tree sickness not sure if it is an H2 I bought it over the counter no script is needed here

 

[julienl]

I used also Allevia 24 hours 120 mg was about £14.00 for 30 days it is an allergy medicine I take at night I think also used in Polen tree sickness not sure if it is an H2 I bought it over the counter no script is needed here

Thanks @Aidan Walsh, I will order that as well.
On a different website forum I received a reply 'Please keep us informed.

As all my crashes usually start with debilitating reflux, an H2 blocker was a normal thing to try. I used Pepcid (I think generic but I'd have to check). I didn't take it for long, though, as it seemed to interfere with my digestion.

How has it been with your digestion, and what dosage and schedule do you take it? Away from meals, after meals, or ?

I've tried stuff like cromolyn, Pepcid, etc - just usually seems to be more negative than positive for me. The most helpful supplements I've taken are things like allicin, andrographis, etc - implying some pathogen or fungus to me, but I don't know. For reflux, things like slippery elm, fenugreek, etc - take the edge off, but don't address the underlying issues.'

To which I said 'Thank you for your input, I used doordash to have a variety of generic pepcid sent to me. Though I'm very thankful to doordash, since discovering it I've hardly left the house. What was delivered wasn't what I ordered, as I allowed alternates, I received a generic famatadine, a Zantec and an Alka Seltzer imitation. After taking all three yesterday I had a drive to leave the house and took my ever patient wife to the park, something I haven't done in 5 months or so. I didn't see the connection until I returned. So, if it's a placebo effect, it's subconscious.

I usually don't eat as it makes me sleepy, so I always take it on an empty stomach, except for coffee and Kratom, my main vices. I've written about Kratom on this site and can add a link if you like, I highly recommend the green malay 'wake up' kind of kratom except that it causes serious constipation
Thank you for the items you mention, I will add those to the retinue as well. I just woke up and took all three again, and I will keep you apprised. Thanks again, J

 

[Aidan Walsh]

Thanks @Aidan Walsh, I will order that as well.
On a different website forum I received a reply 'Please keep us informed.

As all my crashes usually start with debilitating reflux, an H2 blocker was a normal thing to try. I used Pepcid (I think generic but I'd have to check). I didn't take it for long, though, as it seemed to interfere with my digestion.

How has it been with your digestion, and what dosage and schedule do you take it? Away from meals, after meals, or ?

I've tried stuff like cromolyn, Pepcid, etc - just usually seems to be more negative than positive for me. The most helpful supplements I've taken are things like allicin, andrographis, etc - implying some pathogen or fungus to me, but I don't know. For reflux, things like slippery elm, fenugreek, etc - take the edge off, but don't address the underlying issues.'

To which I said 'Thank you for your input, I used doordash to have a variety of generic pepcid sent to me. Though I'm very thankful to doordash, since discovering it I've hardly left the house. What was delivered wasn't what I ordered, as I allowed alternates, I received a generic famatadine, a Zantec and an Alka Seltzer imitation. After taking all three yesterday I had a drive to leave the house and took my ever patient wife to the park, something I haven't done in 5 months or so. I didn't see the connection until I returned. So, if it's a placebo effect, it's subconscious.

I usually don't eat as it makes me sleepy, so I always take it on an empty stomach, except for coffee and Kratom, my main vices. I've written about Kratom on this site and can add a link if you like, I highly recommend the green malay 'wake up' kind of kratom except that it causes serious constipation
Thank you for the items you mention, I will add those to the retinue as well. I just woke up and took all three again, and I will keep you apprised. Thanks again, J

I take it only when needed 120mg

 

[fedbird]

In response to "Pepcid..." last winter I was exposed to black mold in some sphagnum moss (from China via Amazon). That was in January, and this is August. Thankfully, I found a doctor, only licensed in AZ, who is a psychiatrist with a specialty in mold, and biotoxins. (You can see her many U-tube videos under "Dr. Ackerley").
She has a video on "MAST cells". And I began following the MAST cell diet, essentially the same as the histamine diet. But this wasn't doing it for me...--I felt like I was dropping thru layers of life. ME/CFS, 36 years, all the attendant issues, then concussions, one after the other, then mold! The next diet to try was the oxalate diet. This diet seems to be helping the most, along with my doctor's Pepcid and Perscription for Ketotifen Fumarate. The best resource for the oxalate diet is: Toxic Superfoods by Sally K Norton.
hope this is helpful

 

[emjo]

Interesting. Recently I have added Pepcid as an H2 blocker to my usual Cetirizine H1 blocker for allergic sinusitis which is worse than usual these days. I have many allergies mainy food and airborne. I found research which report that there are H2 receptors in the nasal passages and that the addition of an H2 antagonist improves air flow. I have found it so and also the sinus pain is much relieved. As well, I just felt better - less anxiety, more relaxed. Passing this on in case it helps someone else.

 

[julienl]

@fedbird Thanks so much, I'm looking into this

 

[julienl]

@fedbird You have my deepest empathy and sympathies for what you have gone through. I'm similar in that I had a head injury that I believe is at the root of all of this for me at least, and you had concussions. I also was in a moldy house for awhile and am starting to use Itraconozole with nasoneb diffusor to address that. The Oxalate regimen seems intense, I've been a pescadarian that is I was a vegetarian until convinced to eat fish and have been so most my Lfe, so definitely high on oxalate intake. I will do my best to switch and see if it helps, even my supplements are gelatin capsules, I will ask about Ketotifen fumirate. Yes you are super helpful.
@emjo I am concerned about trying an h1 blocker as I read of a user who it made things worse. I wish my follow up was better, but so far since my first post I've been sleeping, the difference has been that I haven't been feverish and achey. Thanks and I will keep aprised

 

[emjo]

@fedbird You have my deepest empathy and sympathies for what you have gone through. I'm similar in that I had a head injury that I believe is at the root of all of this for me at least, and you had concussions. I also was in a moldy house for awhile and am starting to use Itraconozole with nasoneb diffusor to address that. The Oxalate regimen seems intense, I've been a pescadarian that is I was a vegetarian until convinced to eat fish and have been so most my Lfe, so definitely high on oxalate intake. I will do my best to switch and see if it helps, even my supplements are gelatin capsules, I will ask about Ketotifen fumirate. Yes you are super helpful.
@emjo I am concerned about trying an h1 blocker as I read of a user who it made things worse. I wish my follow up was better, but so far since my first post I've been sleeping, the difference has been that I haven't been feverish and achey. Thanks and I will keep aprised

Better sleep is very important. I really don't have a choice as regards taking some kind of meds to deal with my allergies. As it is I have chronic sinus infections which I keep under control with antihistamines and various nasal sprays and occasionally decongestants. .I had my first sinus infection aged 7. However I have wondered if the H1 blockers have affected me negatively in other ways. eg. in the CNS. It's academic for me as I if I stop taking them the infections flare up and spread. I was surprised at the "general well being" effect of the H2 blocker. I have been taking one tablet twice a day - morning and evening and haven't had any gut side effects.
Speaking of guts, I have been checking out the fodmaps (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) content of foods I eat and eliminating the ones I have a bad reaction too i.e. IBS cramps and diarrhea within 24 hrs. I was having worse and worse IBS, but since eliminating the foods I am most sensitive to e.g. asparagus, apples, and keeping to small quantities of others e.g. cabbage, onions my IBS has all but disappeared. I am most grateful as it was getting almost unmanageable. I really recommend to anyone with these problems to do the elimination process for high fodmaps foods. Being dairy and gluten allergic I am limited in what I can eat and this limits me more, but is well worth it.

 

[julienl]

Better sleep is very important. I really don't have a choice as regards taking some kind of meds to deal with my allergies. As it is I have chronic sinus infections which I keep under control with antihistamines and various nasal sprays and occasionally decongestants. .I had my first sinus infection aged 7. However I have wondered if the H1 blockers have affected me negatively in other ways. eg. in the CNS. It's academic for me as I if I stop taking them the infections flare up and spread. I was surprised at the "general well being" effect of the H2 blocker. I have been taking one tablet twice a day - morning and evening and haven't had any gut side effects.
Speaking of guts, I have been checking out the fodmaps (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) content of foods I eat and eliminating the ones I have a bad reaction too i.e. IBS cramps and diarrhea within 24 hrs. I was having worse and worse IBS, but since eliminating the foods I am most sensitive to e.g. asparagus, apples, and keeping to small quantities of others e.g. cabbage, onions my IBS has all but disappeared. I am most grateful as it was getting almost unmanageable. I really recommend to anyone with these problems to do the elimination process for high fodmaps foods. Being dairy and gluten allergic I am limited in what I can eat and this limits me more, but is well worth it.

10 years ago I stopped taking Cymbalta and that helped immensely, it was my first 'break'. I then extracted myself from a relationship that was a near constant source of stress and that was another 'win'. I found and used Xifaxan which helped with the IBS which in turn made the CFS more bearable (strangely the two are connected, you can't have an official CFS diagnosis without exhibiting IBS as well. I was on fodmaps and after Xifaxan was free to have whatever I wanted, or so I thought. Thanks for the helpful suggestion, I will go back to Fodmaps

Theres another similar forum website started by Cort also, but both sites are touchy about placing URL's, so I replied to a user on that site with
For fungus I've started Itraconosole prescription with nasoneb diffusor. So far my nose stopped running for the first time since I got covid 3 years ago.
I was afraid to try andrographis as some users had a strong reaction, for others it was a panacea. I have it, I've just been afraid to try it

 

[AnnaLamothe]

Wonderful to hear of your success with Pepcid - its part of my MCAS regimen