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

 

[julienl]

I've been on Mt Toads wild ride when the Pepcid helped incredibly then I decreased other unrelated meds and Pepcid didn't stop chronic fatigue syndrome episodes but made them less achy. So it wasn't a proper test. For the first month, combined with Nasoneb, Itraconozol meds it stopped episodes outright, while for the next month I got frequent episodes but I wasn't feeling as sore or as agitated physically. Mentally I was and am, anxious while the episodes wore on, then when I could spending any waking or lucid moment I'm researching and thinking about or calling for appointments consumed by cfs in another way. Urrg,

Thanks for allowing to vent. Ok thanks for all your input in your replies, and please consider this a hopeful 'back to the drawing board' moment, as I am taking those meds now as well as trying again the Jorgen Sacha which may have cleared the way for the Pepcid positive effects, as well as
stopped taking BetaClucans supplements, in fact the break in my Pepcid stride was when I tried that supplement for two week. That and in the middle of the night I snacked on something that gave me acid reflux and I vomited several times, the episodes started after that . Also I had stopped Acupuncture herbs, while continued with Coffee, Kratom, PYM Attention focus chews, Albuterol and Alvesco and so am now more diligents

From this experience I can say I started looking more at your replies and considering using specific foods, I used chatgpt to combine food lists combining Keto, Paleo, Low-Oxalate, Pescatarian, FODMAP, and Lectin Avoidance into a shared food list, then the same with adding mycotoxin avoidance, they're attached to the post as word document and pdf file

Taken from 'A patient who recovered from post-COVID myalgic encephalomyelitis/chronic fatigue syndrome: a case report' in her case they used pharmacotherapy including an antihistamine. as stated at https://bpsmedicine.biomedcentral.com/articles/10.1186/s13030-022-00260-3 "Amitriptyline and hochuekkito were prescribed for this patient. Amitriptyline has anxiolytic and sleep-inducing properties and activates the inhibitory nociceptive system as well as acting as an anti-depressant. It also has an antihistaminergic effect"

more on that article 'Although the dose of ascorbic acid the patient ingested was 1.0 g/day, her vegetable-based diet and regular supplementation of ascorbic acid would be helpful for avoiding the potentially harmful effects of oxidative stress and aid in alleviating her symptoms. Recently, the gut microbiota is reported to be associated with the ME/CFS pathophysiology, including neuroinflammation and ME/CFS symptoms [19]. It is also possibile that changes in dietary habits that affected the gut microbiota was responsible for improved symptoms'.'

Also I looked heavily again into FMT, if only I could fake colustrum dificile they would let us try it.

For instance My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT) | Phoenix Rising ME/CFS Forums


(1) Poo Transplant resolved my ME [Deleted] | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums


fmt | Phoenix Rising ME/CFS Forums

DIY Fecal Transplant...would you try it? | Phoenix Rising ME/CFS Forums


Faecal microbiota transplantation (FMT) in Norwegian outpatients with mild to severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): protocol for a 12-month randomised double-blind placebo-controlled trial - PubMed


FMT | Phoenix Rising ME/CFS Forums


Evrensel: Fecal Microbiota Transplantation and Its Usage in Neuropsychiatric Disorders | Page 2 | Phoenix Rising ME/CFS Forums


Episode 19: Fecal Microbiota Transplants - Phoenix Helix

 

[julienl]

To accommodate Low-Histamine alongside Keto, Paleo, Low-Oxalate, Pescatarian, FODMAP, Lectin Avoidance, and Mycotoxin Avoidance, we need to refine the list further. Histamine is a natural substance found in the body and some foods, and individuals with histamine intolerance need to avoid foods that are high in histamine or that promote histamine release.

Shared Allowed Foods (Low-Histamine):​

These foods are low in histamine and align with all other dietary restrictions.

Proteins (Fish & Seafood):​

• Fresh-caught Fish (like cod, salmon, and mackerel—must be freshly caught or frozen immediately to avoid histamine build-up)
• Shrimp (if fresh and frozen immediately)
• Fresh white fish (like sole or cod)

Vegetables:​

• Zucchini (low-histamine, low-carb, low oxalate)
• Cucumber (low-histamine, low-carb)
• Lettuce (low-histamine, low-carb)
• Bell Peppers (green) (low-histamine)
• Carrots (low-histamine)

Fruits:​

• Coconut (low-histamine)
• Watermelon (low-histamine)
• Berries (fresh, especially raspberries and strawberries in small amounts)

Healthy Fats:​

• Olive Oil (low-histamine)
• Coconut Oil (low-histamine)

Key Avoidances:​

• Fermented Foods (e.g., aged cheeses, fermented vegetables)
• Canned Fish (high in histamine)
• Vinegar-containing Foods (due to fermentation)

 

[julienl]

I restarted the Itraconozole with nasoneb as well as the 'stack' I've been taking, 1 pill Pepcid generic famotidin, a Zantac and alka Seltzer once a day, and Coffee, Kratom, PYM Attention focus chews, Albuterol and Alvesco.

I drove my fiance' and stepdaughter for a getaway 3 hours away in heavy traffic and slept the next day. In the afternoon the next day I was able to drive them around sightseeing as well as the day after that. Also at night I was waking up, working 4 or 5 hours, sleeping until the afternoon then driving them around.

This is generally unheard of since my CFS started 13 years ago. I wouldn't have even thought of taking my stepdaughter for a getaway much less doing it. I am happy to check in to say that, knock on wood, this 'stack' is working, and I believe the Itraconozole via Nasoneb is a crucial component of that. You will need a Drs prescription unless you use one of those lenient online pharmacies with Dr's that prescribe you just about whatever you want within reason. I will check in again later and let you know, Thanks!

 

[julienl]

The positive roll keeps going! I wouldn't say this 'stack' (Itraconozole, Kratom, Pepcid etc) is a 'Silver Bullet', but it's at least a brass bullet! I drove my fiance and stepdaughter back to their home about 2hrs away and slept. Then instead of sleeping the next day, I woke at 4:45 am and drove to my place again 2hrs away, and instead of sleeping I had one of the most productive days in 13 years. I worked until noon, then napped until 4, got up and worked until sleeping. All the while I was concerned about not pushing myself to avoid pem the next day, so when I walked my guest and his dog instead of the full loop, I did half. Just having a guest was both unusual and a sign of a change in my state of wellbeing and attitude,

To reiterate, Yesterday was amazing, I had driven my fiance' and stepdaughter back to their home in the evening and slept, then instead of sleeping all day the next day I woke at 4:45am and drove, then worked until noon, slept until 4 then was clear to work until the evening. I ordered breakfast, made coffee, did light yardwork, cleaned and sorted my room, showered, shaved, took my medicines, ordered online, then when a guest I had been wanting to collaborate with said he would be nearby, arranged to meet around 5 something I would never have endeavor as I know I loose focus around that time and am asleep by 7, so he arrived, I interviewed him, took his buddee pet Willey for a walk, ordered dinner, picked up dinner, cleaned, emptied dishwasher, and called my fiance.

I was concerned I would have pem today and I did, I slept all through the night got up realised I couldn't work so went to sleep until 4:40pm, though when I got up and now I don't feel achey like the flu. So this week has been a resounding success, I have confidence to take things on I wouldn't have considered such as the vacation and the interview
For the first time in 13 years I have Hope, that's based on observation, a feeling of better not just hopeforhope
Attached are pictures of the Itraconozole I use with Nasoneb, it was prescribed at my request by a private clinic and compounded by Koshlan pharm, contents and direction
CSinusitis (itraconazole 50mg/mupirocin 5mg/EDTA 15mg/Budesonide 0.5mg compounding capsule compounding capsule
Dissolve contents of capsule in 15mL of sterile 0.9% saline. Perfuse each nostril with half the contents of solution 1-2 times per

 

[julienl]

Day two of pem. As I said it's a 'brass' not a 'silver' bullet. Still though, I was well enough to write the post yesterday and today, which as you know with pem it's unlikely I would focus that much, also haven't had a full blown cfs episode since I decided to try strickly adhering to this 'stack'. So I still mark it as a success. Considering doubling the Itraconozole dose and or doing it twice a day instead of once. Also going to look into what else is on Dr Brewer's protocol. There are many supplements and medicines I will like to trial, however, I don't want to interfere with this experiment, I will give it another month or two. I've added pictures of some of the supplements and medicines I will like to audition

 

[julienl]

hmmm, pretty much slept all day and night yesterday and all day today, perhaps it is an episode, I will check in later

 

[julienl]

Up and about, so it was pem not an episode. I will be careful not to overdo it today. Also I've doubled the dose of Itraconozole. By the way, I picked up athletes foot 25 years ago at a public pool and tried everything to get rid of it, now my toes have gone back to normal, Itraconozole has healed that