A Potential Cure/Treatment

Therapeutic Efforts
#1

Greetings Fellow Survivors,

Like most in this forum, my life was torn apart by PFS. Bone crushing fatigue, loss of libido/ability to be erect, mental fog, depression/anxiety; these were my symptoms and they literally destroyed my career.

I tried everything: rigorous pubmed searches for answers, a 10-day water fast, exercise, every supplement regimen I could find on this forum, meditation, testosterone boosters, everything.

Eventually, I began to feel better, and my last visit to this site was sometime last year. I forgot about PFS because PFS had left me alone.

Since my initial bout with PFS, i had left my career. PFS had ruined my ability to interact with patients in a positive way and my ability to focus on my delicate work on those patients. As a result, I found a less intense line of work in clinical trial research. Now, I design phase I-III clinical trials, evaluate the results, and write reports about the participants’ adverse events. I work mostly in cancer drugs but also in autoimmune disease states. Anyway, it was my new job’s preoccupation with adverse events in trial participants and the detailed descriptions of such events that led me to focus more intently on what exactly it was that I was experiencing when PFS came back…

I had had several minicrashes over the past year, and they had been short lived, so i’d thought little of them. However, this crash, the one that had just started just a few weeks ago, would not go away–and it was a doozie. During this crash, I expereiced all the normal PFS symptoms, but there were some additional symptoms that I had previously overlooked during my bouts of PFS. These included:

  • a worn out crampy feeling in the muscles of my inner thigh (bilateral)
  • a bloated stomach/gut area
  • bowel movement changes
  • a tight chest

The more I thought about things, the more I was convinced that this all had something to do with the gastrointestinal (GI) tract. Something had upset a balance, and as a result, my GI tract was swollen/inflamed. Unchecked inflation often leads to the accumulation of fluid in the inflamed organ/site and this leads to swelling or an increase in overall size of the inflamed organ. When the GI tract becomes inflamed, there are several consequences, and bloating and bowel movement changes are relatively common transient changes. The tightness in my chest I could reasonably attribute to gastroesophageal reflux disease (GERD). The tricky symptom was the strange sensation in my inner thigh muscles. During this crash, and through the many relapses and remittances of the symptoms, i realized that that tightness always preceded and was accompanied by a bout of severe GI upset. It was then that i began to wonder if the swelling in the GI tract (including the bowel) was putting pressure on the nerves, vessels, and musculature of the pelvic region and causing downstream symptoms. Pressure on the nerves innervating the muscles of my inner thigh could be causing the unexplained soreness. With this in mind, I resolved to see what would happen if i could calm my gut down. I hypothesized that i should first lower the amount of acid and gage how to proceed from there. Over the next few weeks I ate very little if any acidic food, I started a 2-week regimen of omeprazole (an OTC PPI antacid medication), and I took antacid tablets throughout the day (qid).

To my astonishment, as the gut symptoms faded away, so did the PFS minicrash symptoms. Just 4 days prior to the breakthrough day, i was unable to get an erection. After my gut calmed down, I was able to maintain a very strong erection, my mental fog and fatigue had gone, and my depression had faded to a distant memory.

Based on these admittedly anecdotal results, i am convinced that some of our cases of PFS may be caused (in part) by gut inflammation.

I suggest those who have found no cure or respite from their symptoms with other treatment regimens try a similar approach and post their results.

My 2 week treatment regimen:

  • No or very little acidic food/drinks
  • 20mg omeprazole (or equivalent PPI) - 1 time per day, for 2 weeks (only if you are not allergic to this drug)
  • Antacid tablets 1 to 2 tablets, 4 times per day, for 2 weeks

It’s not a difficult regimen. I hope someone else can try this and let us know how it goes.

Thanks,
Dr. P

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Mother seeks advise for 19 year old son with pfs
Stomach acid- too much or too little?
#2

Your theory about the stomach isn’t new.

How long has it been since you took omeprazole for two weeks?

#3

I have heard others talk about gut inflammation and hadn’t seriously considered it until recently. Based on my results and this regimen, I do now.

I hadn’t taken omeprazole in at least 5 years.

#4

I have muscle wastage, stiffness, and pain in my left arm and leg as a result of one dose of 1mg fin that have preceded my gut problems in the past week of feeling always acid like having a low-level heartburn if there were such a thing, also have silent reflux. In my case, I don’t feel that my gut problems significantly exacerbated my muscle symptoms nor did their alleviation help resolve the latter, especially in my arm. Maybe it’s different for others.

As per your other thread (and I guess this one), you described undergoing like week-long or longer fasts. Do you think that fasting had made any difference in your recovery overall?

#5

Yeah that’s what I was referring to.

Axolotl pointed out in another thread that omeprazole is an AR inhibitor that can cause ED and gynecomastia so it seems too risky to me.

It could be that the gut factor combined with AR could be the reason it works but I’d need more than one person to say it’s a cure to try curing myself with it. Maybe if a thousand people tried it with some study, until then I won’t be doing it. Thanks for posting the theory though.

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#6

I feel it’s my duty to post more than lbv in this thread in order to rearrange Frequent Posters to ‘FML’

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#7

Sorry to hear about your symptoms. Yes, sadly this is a syndrome because it can be caused by and is a result of many different factors affecting different people in different ways. This is probably why so many different “cures” work for different people. Sorry also to hear that this and other treatment options still aren’t giving you relief.

#8

Oh, and yes i do think that the 10-day water fast helped significantly in the beginning.

#9

I only took my first and ever dose of fin on August 7 of this year, so it hasn’t even been two months yet. I also haven’t started to lift again. I remain optimistic though and think your other thread about turning things around in the face of these obstacles through sheer will powered by anger is great and is something to strive towards.

Though what I don’t agree with is not being angry with multinational pharmaceutical companies like Merck rushing to get drugs out to market before evaluating potential catastrophic risks. But regardless, that anger even if it’s just, is ultimately impotent and fruitless.

#10

Obligatory FML sequence post. lol

#11

Hey, i say use any anger directed at whomever you want to to help. These drug companies, some of which i have/do work for, can be evil. They are literally just trying to get money while getting as close to the ethical/moral boundary line as they can. Sometimes they go over that line, and, if the current politicians are paid up, they wont get into trouble.

i just do my best to do ethical work for them. Cogs in a machine, my friend.

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#12

I mean if these companies were individuals they’d be diagnosed as full blown psychopaths. From creating potentially dangerous, life-destroying drugs, operating through a profit motive of treatment over cure (“innovation”), political maneuvering at the expense of patients, and price gouging, they are downright evil and they functionally have to be in a market that rewards it. Creating drugs that benefit society is only incidental to that evil and not the other way around. At least with PFS, we won’t die from not being able to afford 1000% priced insulin.

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#13

Taking drugs against gut inflammation is only symptom relief. The root is not adressed.

It is important to get comprehensive stool testing as I have been saying for months.
Then you know whether leaky gut, Morbus, pathogens, bacterial disbyosis is to address.
All of them are to be addressed differently.

If your gut is inflammed - calprotectin shows that - you need to do intermittent fasting and changing your diet (raw food, blended food like carrottes)
Restoring gut can take months.
Important is to check liver as well (detox cap.and functional cap.as the liver metabolizes and produces hormones).

But nobody is listening to meet cause everybody is awaiting for the one cure or step.

#14

Thanks so much for sharing this idea. I will give it a try over the next two weeks and report back. Could you share a general outline of what foods you chose to eat and what foods you avoided?

#15

Noprop and others,

I am a whole food vegan, which i do believe played/s a roll in my recovery. I thank you for bringing tha tup.

I have been able to correlate my mini crashes to times in which i cheated for a few days or more (such as thanksgiving, etc.). That being said, immediately jumping to the conclusion that I/we/everyone that has PFS have some form of ‘leaky gut’ is perhaps not the most logical of assumptions. Nor is me saying that ALL PFS is related to/caused by gut inflammation. This is why i mention the word ‘potential’ in the title of this thread.

What i believe is logical is to assume that the dietary changes (which i can correlate to bowel habit changes, mild abdominal discomfort, and mini crashes) are related to eating food that my GI tract is not accustomed to.

When presented with a substance that it is not use to, such as unhealthy processed food or animal products, it is logical to assume that the gut would react in an untoward way. The first thing that epithelial surfaces do in response to an assault, be it pathological or traumatic, is to become inflamed. (I see this response on a daily basis while treating patients.) When the GI tract becomes inflamed, among other things, it swells and the protective mucus coating changes making the underlying epithelium less resistant to chemicals such as the acid, digestive enzymes, and bile chemicals released by the stomach, gall bladder, and liver. “Leaky gut” or not, most people’s GI tract will react by becoming inflamed–as did mine.

Taking omeprazole was simply an effort on my part to speed my GI tract back to homeostasis by reducing one of the insults to its already inflamed surface–acid. Of course, switching back to pure veganism was the best choice, but the omeprazole (a pontent proton pump inhibitor [PPI]) certainly helped, as did the other antacids.

In response to another claim about omeprazole in this thread, I have never seen that drug listed as AR inhibitor, nor have i seen the side effects mentioned in that post listed on its label. However, as we all know, some side effects can go undisclosed with some drugs (finasteride), but I seriously doubt the questionable AR inhibition ability of omeprazole is what helped me. I say this because i have gotten help from other antacid drugs such as ranatidine (an H2 blocker). In fact, i should recommend an H2 blocker because these are considered safer drugs that PPIs, longterm.

My regimen is for only 2 weeks. What i should have also disclosed is that people should be eating healthy whole food–hopefully vegan–diets during and after that initial 2 week regimen. The 2 weeks is a period of treatment, like putting a salve on a wound for 2 weeks then allowing the wound to heal itself after that with healthy living.

So calm your gut down with some antacid for a few weeks, eat no animal products, and your gut will be happy. The way i see it, the things i recommend are easy and part of a healthy lifestyle anyway. It has helped with my PFS symptoms. I hope it does with you guys’ too.

#16

This could also explain why people have good reactions with backing soda, isn’t it also neutralising the acids in the stomac an GI?

#17

Zodiacs:

It might indeed.

Sodium bicarbonate (baking soda) is a base that can help neutralize acids such hydrochloric acid (HCl) which is the primary acid the stomach produces. The chemical process is shown below:

Na2CO3 (sodium bicaronate) + HCl (stomach acid) ----> NaCl (salt) + H2O (water) + CO2 (carbon dioxide gas [burps])

Sodium bicarb actually works so well in this regard that there is actually another prescription antacid medication that is simply a PPI (omeprazole) with a bunch of sodium bicarb added to the pill. It is called Zegerid. See the following link.

Sodium bicarb isn’t long acting though (like PPIs) but it helps.

#18

Dallas:

Sorry for the late reply. For food, i try to stick with vegan whole foods. Even if i didn’t have PFS (or used ot have it), I would still choose this diet.

Any progress to report?

#19

Actually I recant. I can attest to worsening of my IBS-C and my stomach started having problems again with irritation/acid reflux problems post-fin. My constipation was actually cured by eating a lot of probiotic yogurt before taking fin and after taking fin it started coming back recently either as a direct or secondary cause of PFS or a mix of both. I could imagine all sorts of knock on effects from a disrupted gut microbiota as it is implicated in a lot of maladies in research including the latest Melcangi study of PFS.

What are safer antacids to take or the best way of taking and dosing baking soda?

#20

To address gut issues, test your stool comprehensively.
Eat raw food or even better do a juice fast.
To avoid further inflammation.

You can add 3*tsp a day of anorganic sulfur.