My Long PFS Journey


#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.


#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.


#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.


#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.


#25

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


#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.


#27

How long did you use andractim or proviron


#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.


#29

@Trump_1776

I’ve used proviron on and off in doses of 25mg, 50mg, & 75mg for about 8 months total. I thought it helped me with heightening my libido and as an anti-estrogen agent.

Proviron, which is a weak DHT derivative will mask low testosterone symptoms and provide temporary relief, but I had concerns it may be suppressive to HPTA especially in higher doses so I quit using it. I still have many leftover packets unopened.

As for andractim (topical DHT), I also used it on and off for about 3 months in gel form. I applied it to the chest area and thought it may help with clearing/lessening symptoms of gynecomastia (man boobs) that finesteride gave me. I can’t really tell if it helped me in the process but I stopped it long time ago.


#30

I wish you stay stable until it becomes permanent. I’ve written a link to your story in the thread on Success Stories Compilation and I hope in the condensed version i did justice to your testimony. Feel free to correct me if I misinterpreted some parts.

I took fin 1.25 mg (cutting the pill in 4 is cheaper isn’t it ?) for 20 years, but crashed only 8 months ago. I was completely disabled, thought I couldn’t continue working, driving or taking care of my children (at times I could barely walk, speak or think coherently), but I was really sick only two months. After starting a diet and by adding elements to it, 6 months later, I’m now basically normal except for insomnia, which is also getting better.

It just so happens that I started that diet 6 months ago: a very low carbs, high fat, high protein diet which fixes the guts as one of its first effects. Most pfs symptoms disappeared in a week. Later, I did intermittent fasting, resistance training and started taking vitamins, supplements and amino acids. I also wrote a diary everyday, live on this site, on Amino Acid For neurological symptoms

It was @alteredlife that put me on the right track for amino acids and supplements, cdnuts and Jordan Peterson for the diet; cdnuts, my endocrinologist and many stories also suggested resistance traning, so I had my first, main three elements to build a recovery on. People may say whatever they say about cdnuts, many of his ideas were good ideas. (I think it was more the attitude that was hard to swallow, but I don’t know. It’s all before my time)

I’m still fine tuning my protocol but i’m both impressed and comforted by the similarities of what we’re doing.
It’s hard to tell if I would have been sick as long as you did or if I was as sick as you to begin with. But to see similarities indicates there could be a way, with elements from what we’re doing, that could heal even long time sufferers.

It encourages me to continue my researches and tests and to write on this site.

I’m really grateful you have decided to come forward and brings us this precious information.


#31

I think digestive enzymes is a very good idea. Take a look at the amino acid content of a single rib eye steak. It’s many times the aminos you’re taking, assuming you can digest them well and the enzymes would do just that.
(3x Arginine, 5X Glutamine, 9x Tyrosine, 3X Tryptophan)


#32

@Ozeph

Man, this is so intriguing! It never occurred to me a single rib eye steak would contain this high doses of amino acids! This is why I stopped taking protein shakes altogether because I was under the impression that I’m getting way too much protein, which put the kidneys under tremendous stress. I remember reading that 0.7g to 1.0g protein per pound of lean body mass is just enough.

I was taking L-Tyrosine first thing in the morning on an empty stomach because I thought it would be better absorbed and increases likelyhood to crossing the blood-brain barrier to be converted into L-Dope and finally to dopamine. However, I’m now taking it intermittently rather than daily.

Those who consider taking any stimulants, the key is to have them cycled or to only take when needed as to not build body tolerance, which eventually renders them ineffective or even produce counterproductive results.


#33

I’ll keep that in mind regarding stimulants and herbs. I got myself some ashwagandha, schisandra, bacopa, kava kava and st-John’s worth, all for stress relief (to fight insomnia) and some yohimbe and horny goat weed for sexual symptoms. I’ll cycled them all and take low doses first. Have you had any good / bad effect from those ?

I’ve been eating 2 rib eye steaks, plus 2 protein shakes, plus up to 20 grams of amino acids per day. I must certainly take 250gr + a day of protein for 6 months. I don’t have kidney problems. But I don’t eat carbs, so I rely on fat and protein as a source of energy. I burn them. Maybe it makes a difference.

I’ll try cycling 5-HTP, L-Dopa and Theanine, and see what happens. As for Tyrosine, I get 8.5 gr from my steaks. So 500mg in the morning isn’t going to make much of a difference. Plus I must say, I haven’t seen much effect from that amino acid to begin with. Theanine is pretty mild also. Someone would tell me its only a placebo effect I’m getting I wouldn;t be surprised. I don’t see much effects from Glutamine either. I take 5 gr a day, and 40gr from the steaks and shakes.


#34

@Ozeph

The herbs I tried were Ashwagandha, Rhodiola Rosae, Mucuna, Maca, Tribulus, Horny Goat Weed, Longjack, Nettle Root, DAA, Korean Panax Ginseng, and L-Theanine.

Below are my impressions:

Ashwagandha: Gave me more energy and helped with depression but not much with libido/motivation/confidence department.

Rhodiola Rosea: I took around 500mg for couple weeks or so. I’m not sure if it made any difference so I dropped it.

Mucuna: First time I tried it, I felt like “blah” but I was more and more interested in the Dopamine-Testosterone relationship. Basically, these two have a direct relationship so if one raises the other does too. That’s why when I had Testosterone injections I felt like Superman in terms of libido, motivation, strength, energy, and general well-being. I stopped Testosterone therapy because it’s a lifetime commitment. I also had to dial in my E2, which gets frustrating! So I thought that if I could somehow raise Dopamine, then this may raise my Testosterone in the process. So I went on Mucuna again along with the other changes I discussed in original post. Oh boy, did it feel heavenly good! Only problem is, I came across theories about body building a tolerance or “dopamine receptors” down regulation. So cycling should hopefully help with that.

Maca: I used it in powder form. I’d like to think it helped with boosting libido for a while. It kind of stopped working with continued use so I discontinued it.

Tribulus: Took around 750mg-1500mg a day and I think it helps with libido. I still take it every now and then.

Horny Goat Weed: I took it for libido too and it may have helped. I was taking a cocktail back then and I quit it in the process of elimination. I may reconsider it if I ever relapse.

Longjack (AKA Tongat Ali): This one is on my short essential list. It definitely improves my energy level, motivation and libido. There’re also studies regarding it’s effectiveness in boosting testosterone. I take around 160mg a day first thing in the morning. It has to be cycled in order for it to stay effective. Highly Recommended.

Nettle Root: I know there are many around here who are scared as heck to touch the stuff fearing that it may reduce 5AR. I did a lot of research on this but most reports are inconclusive. My hypothesis is that it binds to SHBG, which frees both testosterone and DHT. I take 1g in the evening and have felt nothing but great effects. I also read some theories about it blocking DHT only within prostate. I’m not giving up on it and I feel best when I cycle it.

DAA: It’s bascially D-Aspartic-Acid, I found about it from bodybuilding forums. There was this one study about it raising testosterone in infertile men. I used the powder form in doses of 2g-3g a day but I wasn’t consistent so I don’t know fore sure.

Korean Panax Ginseng: I took it for about a week but I didn’t feel a thing so I just stopped it. I read it may help with stress but I’m not sure.

L-Theanine: I took around 200mg for arounf 3 months. It is an amino acid mainly found in green tea. I used to take it post work out or before bed. I think it had a calming effect, which helped with insomnia. Though, taking it alone in the day made me feel dizzy and sleepy. I still pop one occasionally if I get anxiety.

I never tried Schisandra, Bacopa, Kava Kava, St-John’s worth, SAMe, 5-HTP or Uridine. I may consider trying more stuff if my current protocol stops working.

.


#35

By the way, If I were in your shoes I wouldn’t eliminate carbs because it’s body’s primary source of energy. Also, many of my friends who happen to be competing at bodybuilding shows say that completely cutting carbs during the pre-contest period have detrimental effect on their mental state as well as libido.

I’d say a diet consisting of 20%-30% fat / 30%-50% carbs / 30-40% protein is a good starting point.


#36

I didn’t completely cut carbs. I have 5 to 10 gr a day, except on carb reloads where I take 40 gr.

A ketogenic diet has calories 70% from fat, 26% fromprotein and 4% from carbs.
But I eat more protein than that.

I get my energy from saturated animal fat and coconut oil. It’s 2.25 times more energy per gram than cards or protein.
Search ketogenic diet for more. It’s very healthy for the brain and adrenal system.
Plus when I did eat carbs, I had headache and stomach problems everyday. After I crashes, I had all the neurological symptom. It all stopped the first week I replaced carbs with fat as my energy source.
I take carbs in small quantity to prevent cortisol spikes and to trigger insulin at specific moments in my intermitent fasting.
I’m gaining weight, and it’s all muscle.
I’m not critisizing those who take carbs, if it works than good ! I like carbs.
But if you do the research, you find the brain works better on ketones (fat fragments)
Tomorrow I’ll post my impressions on the aminos and supplements I tried.


#37

Can’t wait :slight_smile:


#38

Well, I’ll start by those who have a good effects:

5-HTP 100mg along with L-Tyrosine 500mg and L-Dopa 350mg first thing in the morning.
This clears away the brain fog, prevent depression and makes me feel confident. It also put me in a good mood and I’m motivated to begin the day. My best amino acids.
For a time, I took a second set at noon. Feels great, maybe too much, and it makes it harder to sleep at night.

Theanine 200mg: This one works on GABA, serotonin and dopamine. I use it in case of anxiety or stress in the day time but it doesn’t feel good before bed time. I take it with coffee as it creates a synergy with caffeine and prevent a caffeine rush (cortisol spike). It’s mellow, but energetic at the same time. good for concentration. At other time I consider it as an anxiety aspirin.

L-Valine 2000mg. I take this one in an effort to restore sexual sensitivity. Sensitivity is increasing but it’s over a long period of time (months) and I can’t know for sure if Valine is responsible. It’s one of the one BCAA that has an effect on the mind, connecting it to the muscle, among other effects.

DHEA 10mg. This is a precursor to both testosterone and estrogen. it raises both. The pills are 100mg, which is way too much (and feels bad) but at 10mg, I get a good effect at boosting testosterone (I deal with estrogen with other aminos below). This one can be dangerous and make people worst. use with caution and in small dose. It has to be tapered off.

Pregnenolone 10mg: Precursor to most hormones. When I take it, i feel calm and strong. It kinda stabilize me deep down inside. In can be transformed onto whatever hormone the body needs (almost). I once took up to 400mg a day ! I was feeling hype and on top of the world. After a while, I started destabilizing so I tapered off to 10mg. This one also can be dangerous and make people worst. use with caution and in small dose. It has to be tapered off.

DLPA 500mg. It’s the cousin of L-Tyrosine and both are precursors to regulating dopamine. I can’t say I’ve seen a difference taking it.

Pine Pollen in DMSO. DMSO can be mixed with both water and oil, and it extract what is soluble in both. Putting the pine pollen in DMSO and applying a pea size to my forearm (and spreading it) makes all pine pollen androgen go directly to the blood. I once put 1/2 tea spoon and I felt like taking two Testocaps. A real testosterone rush. It made me aggressive so I reduce to a pea size amount. (this one prevents prostate cancer. It’s an adaptogen.

Choline 500mg: This one does 3 cool things. It cleans the liver of fat (I’m on a high saturated fat diet), it’s creates the neuro-transmitter acetyl-Choline which among other things, regulates the vagus nerve (and therefore has an effect on the guts) and it methylate estrogen and get rid of the excess.

Inusito 500mgl: It’s actually vitamin B8. It goes well with Choline as it also cleans the liver from fat, but Choline is a stimulant and B8 is a relaxant. I’m now testing it as a sleep supplement, at 2-4 gr before sleep. So far so good.

Betaine 400mg. Along with Choline, it methylate estrogen and get rid of the excess. It does other cool stuff like greatly helping with digestion, heart health and people use it for better athletic performance. It helps in improving sleep by easing digestion.

Glutathione 250mg. The body’s master anti-oxidant. We can create it with Cysteine (which makes me nauseous if I take too much) so I take Glutathione directly. I’d be lying if I said I feel super anti-oxidized. But it decreases inflammation so that can’t be bad.

Collagen peptide 5 gr. I take this after a fast, to fix leaky guts, to prevent food allergies and reduce inflammation. It also fixes joints. Great supplement. People have had bad effect from this. I took up to 30 gr. a day and was fine but i keep it to no more than 5 gr now.

Of course, there’s the whole vitamin B complex, which is of use against anxiety. B6 and B12 are needed to convert serotonin into melatonin. (along with calcium, magnesium and zinc. but all in small amounts, like 1/10th of a normal commercial dose)

I’m now trying Calcium Pyruvate 1000mg as a source of both components. Calcium should be taken in the morning, it’s a stimulant, but a small dose before sleep (like 25mg) helps with melatonin. Pyruvate promotes the Orexin complex which regulate the circadian rhythm. Makes you awake in the day and sleep at night. It regulates the production of melatonin. Again so far so good. Worst case scenario, I’m just taking a calcium supplement at low dose.

Carnitine Tartrate 1000mg. Helps build muscle when doing resistance training and creates more estrogen receptors. Aas resistance training boost 5 alpha reductase, I think this one contributes. I take it to alleviate sexual symptoms. I don’t know if it works. I do have a six pack, nice pecs and nice shoulders, and sexually I’ almost 100% except for a lower sex drive (maybe it’s pfs, maybe it’s because I’m 50, maybe it’s because I took the red pill and I have less interests in women. I don’t know)

The Arginine suite: L-Arginine 500mg, Arginine AKG 500mg, L-Citruline 500mg, L-Ornithine 500mg.
basically gets rid of ammonia in the body, creates nitric oxide, is good for erections and helps sleep by clearing out sulfur dioxide (which can cause insomnia and headache) I take it before training as it eliminates toxins from the muscle as we train. Also good before sex, it’s a natural, less potent Viagra.

Melatonin. It helps me sleep. Before I was taking an anti-depressor (Agomelatin) which interacted with melatonin so I couldn’t take this supplement but now I can. I never saw any affects from Agomelatin, except on my wallet: it’s expensive.

What didn’t work or had negative effects:

GABA. It’s suppose to help with anxiety but it interacts with the benzodiazepine I take for sleeping. So it’s bad for me, maybe good for someone that takes no drugs acting on the GABA receptors.

Calm Aid. Silexan (lavender oil). It doubles down on my benzodiazepine and knock me out for the night. it’s like a double dose. However, it’s estrogenic and make all sexual symptoms worst. Not for me.

Fish oil. Omega 3-6-9. For some reason, I feel bad taking it. I think it’s an 5ari and that would be why. To be honest, if it feels bad, I don’t waste time searching why. I just flush it.

Taurine. I had great hope for this one. In the absance of allopregnanolone, it the back up regulator of GABA receptors. But it makes me feel bad. Either because my GABA R are messed up, or because it interracts with the benzodiazepine. Aalso not for me.

Tryptophan. People have good effects from this, not me. If I take it before sleep, it’s a ticket for insomnia. For some reason I don’t get, 5-HTP works better for me (but in the daytime)

Glycine: Another one that was supposed to help but never did anything I can feel. It’s suppose to fix the guts, although collagen is better in my opinion. So I take it or not, no difference.

Glutamine. Tried it in the day time, before bed, never saw a difference. It is the most common amino acid in the body (makes up 30 or 40% of all aminos in the body, I can’t remember). I take it as a supplement to create muscle. It surely helps but I can’t feel it.

That’s all the time I have today.

Next time, I’ll write some about vitamins, minerals and herbs.

I wish the best to you all.

Update: Inusitol in a separate form (without Choline), Betaine and Calcium Pyruvate are new additions to my regimen. I still don’t know if and How I will add them permanently.

Yesterday I had a bad night. Possibly because I overslept by 2 hours on the previous night (it always makes it difficult on the next night when I oversleep) or possibly because of Calcium Pyruvate, Calcium being a stimulant and Pyruvate boosting the Orexin complex (the awakeness hormone). Still need more testing to ascertain it’s effects.

Betaine HCL, especially at lower doses like I’m taking, does not seem to be detrimental.

Inusitol (B8) 2000mg is surprisingly good. If it wasn’t for having to get up and pee, I would have had a wonderful night. I woke up (to pee) feeling amazingly groggy and it went away within 5 minutes. After I couldn’t sleep for the rest of the night. I’ve read taking another 2000mg after waking up would fix this. I’ll test it.


#39

@Ozeph
Waw Man you got yourself arsenal right there! :smile: While I’ve tried many of the listed stuff, there are whole a lot of other things that I haven’t touched, yet. Can’t thank you enough for your detailed review, I’m certain it’ll help many who are desperately looking for answers. I, for one, spent countless hours looking for reviews like this very one.

I want to reassure you that “Sensitivity” does return. It does take longer for some than others but eventually comes back! It did with me. The libido is the tricky part, well at least for me! Even now when I feel great 'n all there’re still fluctuations. It usually is the last part to coming back online when all other things are fixed and sadly is always the first thing to go when things go out of whack.

I observed over the years that there’s a certain pattern in which things start to take place. I’ll try my best to describe it in the most simplistic manner possible:

Pattern A (Poor sleep):

Insomnia or difficulty falling to sleep–> interrupted/erratic sleep --> Wake up feeling bad, tired & demotivated --> Feels bad through out the day, introvert, depressed & experience mood swings --> Low or non existant libido

Pattern B (Quality sleep):

Falls to sleep easily & early --> Deep, Uninterrupted & Quality RIM sleep --> Wake up feeling great and positive --> Confident/energetic/motivated/social/talkative through out the day --> Sexual fantasies & great libido

So basically when I correct my sleep problems (This could be from a number of things) and start getting that quality RIM sleep for 2-3 consecutive days, I start feeling more positive and energetic first thing in the morning and more confident, aggressive and assertive during the day, and then a day or two later I start getting sexy dreams and return of the morning wood followed by sexual thoughts and heightened libido. However, when something’s goes wrong it’s always the sex drive that goes missing first and other things follow suit.

You could say that it works as an indicator when everything is properly tuned. That’s why I now focus on getting enough quality sleep and I know sooner or later the libido part will go live.

I’m totally fine with most of the stuff that you’re taking but I do have some concerns over 5-HTP & L-Dopa long term use. I’m talking Dopamine & Serotonin receptors down-regulation (i.e. tolerance effect). How long have you been on these?

I’ve been on DHEA 10mg because I remember my DHEA-S being borderline low. I think it helped with raising total testosterone but like you suggested I tapered it off.


#40

I have PSSD but your description of sleep patterns is very similar to mine.

I have trouble sleeping and must maintain a very rigid schedule/lifestyle to get half-decent sleep. If I get good exercise, eat a paleo-ish diet, spend no more than 7-8 hrs in bed, and go to sleep between 9-10pm, then my sleep will improve within a week or so. If I maintain that pattern then I def notice improvements in some PSSD symptoms. But I have never been able to maintain it longer than a month or so, as it seems there’s always something to disrupt my habits.

And even if I do everything right, I still will have seemingly random bad nights. It seems like PSSD has hindered my ability to sleep, so it takes a near-perfect routine to make it happen. And I have seen sleep docs, done a sleep study etc, to no avail.

It’s hard to separate the effects of chronic poor sleep and PSSD, but I’m sure I would be much better off if I get my sleep in order. I’ve written a big guide of sleep hygiene habits posted here which I mostly follow, and it does help. Between that and other lifestyle improvements, I’m confident I will have some long stretches of good sleep this year, but I’m always interested in diets/supplements that help people sleep here.