My Long PFS Journey

#9

Thanks man, really appreciate you coming back and replying.

Please don’t be a stranger and do let us all know how you’re getting on in a while, but please stick around for a while, I hope people take the opportunity to ask some questions. :slight_smile:

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#10

Cheers Doomed for the response.

I have GERD/GORD, I had a endoscopy recently but came back normal (no stomach ulcers), I previously had H. Pylori as well diagnosed from a stool test but cleared with standard eradication therapy.

I do have IBS like symptoms (never been diagnosed): constipation, odd stools sometimes soft/hard, no diarrhoea recently. Bowel tend to move about one hour after a meal so usually 2- 3 times a day unless I’ve had alcohol and then they’re all over the place.

I’d say I have bad digestion but then I think I always have, bloating etc. Betaine HCL I’ve been taking has been helping with that.

My worst symptoms are chronic brain fog/insomnia going on for 2 years now.

I should say as well congrats on your recovery and thanks for detailing your regime.

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#11

Are you on probiotics. Try a megadose of probiotics. I read where a woman cured her ibs and cfs with one huge intake of probiotics (like 10x) and then normal recommended dose. She had a lot of the mental fog, insomnia, cfs and ibs symptoms. I’ll try to find the article. I attempted to copy it a few years ago. I take probiotics daily. I can’t say wether that helped me … but I’m close to cured now. I relate my cured ness to TRT but if I don’t take probiotics I’m miserable!

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#12

Not PFS exactly but symptoms overlap. I was seeing a cfs doctor for a while but my issue was hormonal. I did do this however and I can say i felt amazing (after th initial discomfort of so many probiotics)

To this day I alternate between different brands and my gut has never been better. Looking back to 4 years ago my bathroom visits were awful

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#13

I’m not sure about probiotics, I eat probiotic yoghurt and kefir but I’m sure I saw an article that said they had almost no effect.

Should we start a discussion about probiotics somewhere else?

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#14

After taking heavy antibiotics for a bronchitis and a bad wound on the hand, I ended up with anxiety. I fixed it by stopping the antibiotics and taking probiotics for a week.

I think probiotics shouldn’t be taken everyday. The ones I’m taking are pretty potent and I get gas, diarrhea etc… from it after a while. that’s when i know I’m loaded with the right bacteria, and I can stop the probiotics.

I then take them once a week, for a reload, just to make sure, and I get no side effects from that.

BrongFogBoy had a nice thread on probitotics: Game Over PFS - I'm Recovering. I’m not sure he recovered, but he was on to something.

Also @doomed80 mentioned peptide to fix the guts (along with Glutamine). Peptide is also known as hydrolyzed peptide or hydrolyzed collagen. I use partially hydrolyzed collagen in the form of pure gelatin 5gr, dissolved in hot water, or bone broth on a regular basis. Collagen is 30% Glycine (which is also very good for fixing the guts) and 15% Glutamine.

I made a collagen experiment here: The use of Collagen and although I had a mini crash in the middle due to too much Cystine by eating liver and whey protein isolate shake (both loaded with Cystine) in the same day, it was unrelated to collagen. After that and until now, I can tolerate food that used to give me food allergies and exacerbate my pfs symptoms.

axolotl warned us of the possibility to make ourselves worst by the use of collagen.

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#15

Hi doomed80.

I would like to add your story to the compilation of success stories I’m doing, otherwise it might just get lost with time.

May I asked you when did you crash, for how long were you sick ?

How long after you crased you started your protocol ?

You mention you’ve been symptom free for 3 months and before you were 80% recovered. What were the remaining symptoms 3-4 months ago ?

Thank you for your help, it’s greatly appreciated.

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#16

Post removed by author

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#17

Hey Doomed,

Great post and very informative, thanks for posting. I have tried much, but not all of the supplements/aminos you have mentioned above and found that several of the supplements in your regimen were effective in trial. Are you still actively following this regimen? I’ve been reading much into the gut and thyroid issues as well, I’m curious what made you think of treating hypothyroidism? Was there a specific symptom you were aiming to relieve?

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#18

Any probiotics you’d recommend? I tried home made kefir for a while last year and didn’t notice any effects. I was making it from pasteurised organic cow’s milk.

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#19

@Cornwellsb
Thanks for your help. I’ve been on probiotics for a very, very long time and have experimented with different brands and doses but my gut issues were not improving (e.g. constipation, bloating, cramps, flatulence to name a few). Frankly, I’m still unsure whether they were positive or negative in regards to my gut issues including SIBO. However, I opted to stop Probiotics as part of the “elimination process” I described in my original post. I also took a round of antibiotics in addition to Diflucan in an attempt to press the “reset button”.

I haven’t taken any probiotics since then (except for Greek yogurt) and I’ve generally been feeling great. My BMs and gut issues were all normalized. I don’t plan on going back to probiotics.

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#20

I use this one, but only once in a while. Especially after taking antibiotics. It’s too strong to be taken everyday.

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#21

Speaking only from personal experience, I’ve used several brands of probiotics (in tablet form) with varying doses (3billion, 15billion, 30 billion, 90 billion, & even 150 billion) and my depilating long-standing gut symptoms were not improving. I had this strange idea that Probiotics might actually be worsening my SIBO symptoms since the concept of taking antibiotics (which I did) is to control the overgrowth of bacteria (good or bad) in the small intestines. Again, take this with a large grain of salt.

I’d surmise natural Probiotics like yogurt and kefir are fine. Remember, IBS is usually a diagnosis for exclusion. When they can’t figure out the gut issues, they’ll always label it as IBS.

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#22

Hello Pete,

The body is all connected, one thing goes wrong and there you go the Domino Effect follows suit. I spent years and years trying to look at my issues from a single perspective like trying to raise my testosterone levels but my issues were never fully resolved so I tried to look at the big picture.

Speaking of Thyroid and the Gut. Well, Thyroid is known to effect the gut (among other bodily functions) in many ways like governing the transmit time (AKA gut motility).

Long transit time results in constipation, which in turn leads to a myriad of symptoms and mood disorders. Symptoms that made me suspect hypothyroidism include lower body temperature including cold hands and feet, diffused hair loss, constipation, mood swings, slow metabolism, and above all blood work results.

As for the gut, it is now scientifically established that our brains are connected to our guts (Brain-Gut Axis). Read on the Enteric System. Most of us PFS sufferers complain from symptoms of anxiety, depression, brain fog, forgetfulness, fatigue, feeling of impending doom among others. Well guess what, many of these symptoms are actually tied to low serotonin in the brain and 90% of the total body serotonin happens to be made in the GUT.

So it is imperative to fixing the gut issues in addition to any other prexisting problems (T:E balance, Adrenals, Thyroid, vitamins & minerals deficiencies and others) to pave our way into recovery.

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#23

Interesting … my doc put me on a round of antibiotics and something called NYstatin to kill off yeast. After this is when I attacked my guy with mega doses of probiotics. I think everyone is different. I was a farting machine before all this. I usually migrate from one probiotic to another on a monthly basis. I use renewlife, garden of life, hyperbiotics, and a few others. Lots of yogurt and I drink apple cider vinegar in the morning with branch chain aminos drink and fiber. It’s impotyant to note I was never SIBO and this was more for mental and energy issues.

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#24

@Cornwellsb

I also was prescribed Diflucan, which is also an anti-yeast infection treatment similar to NYstatin. If you’re feeling great now with normal BMs and without bloating, cramps, malabsorption, and flatulence then bingo!

I’ve used similar probiotic brands as you in the past couple years or so. IMHO, the crux of this matter is that one should always normalize any gastrointestinal issues in the journey to recovery. Healthy adrenals and thyroid are also crucial to ones recovery.

Last but definitely not least, achieving optimal T:E ratio is also a key milestone. It literally took me years to put all these parameters in perspective.

My one single message to PFS sufferers is to tackle this epidemic from a more comprehensive approach.

It’s truly a life changing experience.

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#25

Yea that’s me … I went on TRT wich finally “cured” me of the worst of the problems

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#26

Hi @doomed80

For the purpose of adding your story to the success story compilation, I will assume you were sick 3-4 years, that you had a stable recovery for 3 months and before that you had undisclosed symptoms.

If you want to add some details, by all mean do so, It would be greatly appreciated.

By adding your story to the compilation, it gives hopes to all of us as it becomes part of numerous success stories with different approach (there’s not a single protocol that works for everyone. People need options). It enables us to see what are the common approach to all those stories and it prevent your story to disappear as people stop posting on this thread.

Thank you for sharing your results with us and I wish you the best of success in keeping your recovery stable.

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#27

How long did you use andractim or proviron

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#28

@Ozeph

Thanks for your concern. I’ve been on both Propecia (1mg) and 1/4th Proscar (1.25mg) in the distant past for hair loss. I’ve also used drugs similar to Accutane for skin issues in addition to Corticosteroids, this have further complicated my long standing issues! My symptoms have lasted for many years. I recall the years 2016 , 2017 & first half of 2018 were by far the worst ever.

I’ve always been following kind of “hit or miss” approach in those past 10 years or so. There were times where I thought I was cured but I’d crash again.

So I finally started with my journal by Mid 2018 for a more technical approach in which I’d list exactly what foods/drugs/supplements/lifestyle changes I’m introducing on weekly/daily/hourly basis and how do they individually affect me (+ve or -ve) in terms of libido, cognitive skills, behavior, appetite, memory, sleep, digestion, body composition, and general well-being.

As you mentioned, I’ve been stable for over 3 months now and this has been the longest in those 10+ years and I plan to sustain it that way! I like how I’m able to easily get up in the early morning, how I’m productive at work, how I’m socially approachable, how I can go out and about without suffering anxiety attacks, how I could fall to sleep at night, how I can cope with stress better, how I can exert physical effort without feeling like a train wreck, and how I feel normal sex drive and feel alive!

The road to recovery is a long one and requires a lot of patience, dedication, testing, observation, knowledge, and perseverance. I wish that with my story and other great succces stories on here to bestow hope to others who think this is a life sentence. Peace.

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