Game Over PFS - I'm Recovering


#1

After more than five years of suffering I’m recovering from PFS, and more importantly I believe I know why.

I’ll start off with saying that I have probably ingested more finasteride and 5AR inhibiting drugs than almost anyone here as I took finasteride for around nine years and dutasteride (more potent type of 5ar inhibitor) for two years after for a total of 11 years of 5ar inhibitors. I’m stating this because I am on the road to recovery and letting you know that if I am able to recover then you are too. I can tell you right now that those of you who predicted androgen receptor insensitivity are correct but the underlying cause is an unexpected one. The epiphany came to me when I saw this Ted Talk by Dr. and Scientist Rob Knight about something amazing they discovered about the human microbiome, you don’t have to watch it, I’ll summarize below:

youtube.com/watch?v=i-icXZ2tMRM

The enlightening part for me came at 12:20 seconds where he describes an experiment they performed: If you take gut microbes from a fat mouse and put them into a skinny mouse, it makes that skinny mouse eat more and it becomes fat. Adversely, if you take gut microbes from a skinny mouse and put it into that same mouse (the mouse that was skinny and became fat), the mouse becomes skinny again.
So a skinny mouse takes on some of the characteristics of a different mouse when it receives some of its microbiome, what if I take microbiome from a young healthy donor (called a fecal transplant) and put it in my body, would I become normal again? Sound crazy? It is, but it works and the Mayo Clinic uses this technique with a 90% cure rate for some diseases, check out this link for the facts:
mayoclinic.org/medical-profe … -cure-rate

Well, I’m desperate, at that point I had low libido, extreme apathy, and very bad brain fog that I could control only through high zinc supplementation and other little protocols - so I tried it. I found a very healthy donor, healthiest person I know, convinced them to give me some of their poo and implanted it into me. I would not recommend this to anyone, it was as bad as it sounds. I went to sleep that night in disbelief at what I have come to in order to try and overcome PFS disease and honestly I had no expectations that anything would happen because I have tried 100’s of other protocols / remedies to no success.
Well, the next day I had the best day I’ve had in the past five years or as long as I could remember, it was unmistakable that I felt completely back to myself - it worked. No anxiety, my brain was firing on all cylinders, I felt happy, energetic, wanted to go out, I had personality, and life was amazing again. The next day I felt great again, and as the day went on it slowly started to fade and PFS pulled me back in, I was not cured but to me the root cause of PFS had revealed itself and it was in our microbiome.

Like you can imagine I spent the next several days contemplating what had happened and why. I suspected the reason that I returned to normal PFS after a brief recovery is this: the mouse in the experiment were born into an isolation chamber and had no microbiome when it received its implant. I on the other hand of course do have a microbiome which I theorized eventually destroyed / got rid of the donors healthy microbiome I received. This means that I could not swap my microbiome, I had to change it. This also means that the cure for you is not a fecal transplant so don’t worry 
I should also add that I had another recovery back in July 2014 by altering my microbiome, here is that post:
July 2014:

So I had two instances where I had a complete recovery by altering my microbiome. In the next weeks I found a string of puzzle pieces that fit perfectly into spots that were always a blank for me and others on the board.

After deeply researching Dr. Rob Knight and his research with the Human Microbiome Project and signing up for classes on microbiome I found Dr. Kenny Mierlier who is at the forefront of groundbreaking research surrounding Chronic Fatigue Syndrome (CFS). People suffering from CFS are in some cases bed ridden and loss of libido is the least of their worries. We do not have CFS but his personal research is applicable to us and is where I found the link to what causes our androgen receptor issues.
So I watched a presentation done by Dr. Mierlier that explains when our microbiome changes in a certain way, some of the good bacteria in our body turn bad and start doing some pretty terrible things to our entire biology in a matter of hours. The explanation behind this is a long one so I’ll give you the short version:
When certain good bacteria start to become dominant they turn pathogenic and begin to excrete something called Hydrogen Sulfide (HS2) and this is detrimental to our well-being causing a whole host of issues, one of them being what we’ve all suspected, androgen receptor repression. There are many scientific studies that have documented this, here’s one of them:

Hydrogen sulfide represses androgen receptor transactivation by targeting at the second zinc finger module.
ncbi.nlm.nih.gov/pubmed/24942741

This is why we don’t respond to testosterone supplementation and have horrible reactions to lifting weights and exercise. Taking testosterone when your androgen receptors are not working is like a diabetic eating a lot of sugar, you’re going to feel awful. Remember my post above where I had another temporary recovery when I altered my microbiome and was taking Dermacrine, a testosterone booster? Keep this in mind, I lowered HS2 thus freeing up androgens and then boosted my test levels. Moving on:

I started to go back into our forums to find a connection between what makes people feel better / worse and see if there it links back to HS2.
I noticed that Zinc seems to help so many people on this forum. If you didn’t know it helps, do a search, many people have and continue to benefit from it, here’s only a few examples from quick searches I did:

viewtopic.php?t=7044

viewtopic.php?t=2872

viewtopic.php?t=4983

viewtopic.php?t=165

So why have me and so many other people benefited so much from Zinc? Here’s why:

The effects of bismuth, iron, zinc and nitrate on free sulfide in batch cultures seeded with fecal flora. (Zinc Decreases Hydrogen Sulfide)
ncbi.nlm.nih.gov/pubmed/12927694

Another interesting note: One of our members, ‘mariovitali’ created a thread claiming that he has been eating very high levels of spinach and recovers as long as he is doing so (link: viewtopic.php?f=27&t=9478) . Once he stops eating the spinach he returns to baseline PFS symptoms. He has attributed that to the Dolichol which is in the spinach. I don’t believe it’s the Dolichol but because spinach is relatively high in nitrates which in the above study show to decrease Hydrogen Sulfide. He is increasing healthy nitrates to a high enough levels that HS2 is decreased and some androgen receptor sensitivity returns so he begins feeling better.

Don’t worry, I’m getting to the solution soon. Here’s more pieces to the puzzle.

Later on in the Dr. Mierlier video I pasted above he discusses how once HS2 raises and the microbiome is out of control it will most likely attack and greatly reduce healthy levels of E. Coli in our body (there is a deadly strand of E. Coli that you don’t want and a healthy strand that everyone should have) he states at 1 hour and 13 minutes and 13 seconds:

Have you noticed how many people say they get relief from taking 5-HTP which is created from Tryptophan? Here’s some examples:

viewtopic.php?f=6&t=7283&start=20

viewtopic.php?f=24&t=8909

viewtopic.php?f=23&t=3334

viewtopic.php?f=24&t=5664&start=80

There are plenty more, just do a search. There are also a number of other supplements that people say help their symptoms and almost every one of them I have linked back to some type of NS2 reduction / removal (Bile Acids reduce NS2, Arginine reduces NS2, and on and on).

I have also noticed that many people report having ringing in their ears. That has to do with dopamine issues.

Tinnitus dopaminergic pathway. Ear noises treatment by dopamine modulation.
ncbi.nlm.nih.gov/pubmed/15922111

Low levels of dopamine also means low motivation, ambition, drive, zest for life, cognition and others. What creates dopamine? Tyrosine which is one of the key amino acids created by E. Coli and is being blocked by our system. It’s nice to know that Tyrosine is also critical in creating thyroid hormones and regulating your body temperature. Do you have hypothyroid symptoms like low body temperature? That’s one of the reasons why. HS2 also lowers selenium levels which is crucial for proper thyroid functioning:

Hydrogen Sulfide Lowers Selenium
ncbi.nlm.nih.gov/pubmed/25333279

Some of you will feel better by taking Tyrosine, others will not because the enzyme that converts it to something useful is not working. You can skip the biosynthesis process by supplementing with a type of dopamine directly (e.g. L-Dopa, or Dopa Bean) which I will talk about later.

I could go on for probably twelve pages with the connections I’ve found from HS2 and thyroid conditions, androgen problems, libido, anxiety, depression and on and on, research more on your own if you’re interested. I will quickly add that when your body is in this state it can cause other issues like Candida and Adrenal Fatigue. This are not root causes of PFS, they are side effects as is sub clinical hypothyroidism and others.

So how did finasteride effect some people in just one or two days? Did you know that simply eating fast food for one or two days can completely alter your microbiome? Did you know that your microbiome is directly involved in metabolizing drugs like finasteride and are directly modified by the type of drugs you take and food you eat?
Here is are some articles that discuss this, do your own research, this is thoroughly covered:

Drug metabolism: manipulating the microbiome
pharmaceutical-journal.com/n … 40.article

ncbi.nlm.nih.gov/pubmed/22914093

ncbi.nlm.nih.gov/books/NBK154091/

So finasteride goes into our body and almost immediately starts changing our microbiome, while changing a cascade of hormones in our body when it blocks 5AR2 causing an altered microbiome and allows an opportunity for imbalance and the resulting effect of HS2, E. Coli suppression and others. I won’t go into how the shift with these hormones causes an actual overgrowth of bad bacteria it takes too long (in an already long post) and isn’t as important as the cure. The bottom line is this, finasteride is an insane drug that has altered our microbiome to a horrible status with terrible results like androgen receptor repression – this is what has to be resolved.

The protocol to reduce HS2, restore your microbiome and replenish healthy E. Coli (if you skipped to this part without reading the explanation then this will probably not make sense)
You must cut out all forms of grains, dairy, artificial food. All of these foods feed the bacteria that is creating HS2 in your body and causing androgen repression. Some of you are going to really struggle with this, you don’t realize how addicted you are to these foods until you remove them. But have you noticed how almost every person (possibly all of them) who has recovered as reported having a clean diet and saying that the diet was an important part of the recovery? This isn’t a coincidence:

CDNUTS [From Recovery Section]

JAPANTHER [From Recovery Section]

BIGSOFTIE [From Recovery Section]

Boston [From Recovery Section]

And finally, Chi, who is recovered and still recovered also said that this issue was related to pathogens in the gut. I went back recently looking through his posts and found a result from one of his microbiology tests:

Take a look at the very top, showing that his E. Coli shows almost no growth whatsoever. This means he had pathogenic bacteria that was inhibiting E. Coli and most definitely creating HS2 causing androgen repression. Chi didn’t identify HS2 and all of the connections but he had the fundamentals correct, Chi was right!!

Here’s the laydown: You should start feeling good at about fourteen days of the protocol. Know this, if you cheat even one time you’re probably back at square one. I spoke with a very knowledgeable doctor in person about this and was told that eating the wrong food can cause an immune response that could last a day, a week, or even a month or longer in some cases. So cheat if you want, but know that you may be hitting the reset button. Going two weeks with just Kale and lunch meat is a very difficult thing for some of you.

  1. Eat only green non starchy vegetables for two weeks. Things like Squash and of course a baked potato are out. NO GRAINS OR SUGAR. Do not add spices to it, only salt, olive oil and apple cider vinegar or Tuermic (only spice allowed). You can eat clean non anti-biotic meats like pork, turkey, chicken. If you can tolerate them then walnuts are ok, peanuts are definitely not. Almost anything else will cause issues. Just do yourself a favor and only eat spinach and kale and the meats, don’t take chances and DON’T CHEAT.
  2. Drink only clean water, add no fruit juices to it or anything for flavoring.
  3. NO SUGAR, even from fruits and especially artificial and not even natural sugars like stevia.
  4. Prescript Assist probiotic 1 pill three times daily to help with microbiome regulation.
  5. VSL#3 probiotic 9 pills a day split into three doses which repairs the gut lining for microbiome to flourish, this is very important.
  6. L-DOPA one in morning one in afternoon to resupply dopamine. This skips the synthesis step that Tyrosine takes to create dopamine, I would not recommend taking Tyrosine directly.
  7. Vitamin C as ascorbic acid, 1 gram 3x a day for adrenal support.
  8. B complex vitamin, P-5-P , and an active folate like “Metafolin”, or Quatrefolic “best Folate” by “Doctors best” brand (this is what I took). These will help with supporting adrenals that have probably been affected.
  9. Once you start feeling noticeably better (probably after two weeks) it means HS2 is low and you can add in the test booster of your choice. Tongkat Ali and Tribulus is what I have been using – now they will work and keep working where before they did not. If they make you feel worse you still have HS2 you need removed and microbiome to balance.
  10. Mutaflor with directions as on bottle. This is optional and is not necessary but will help speed things up. The other items in here are not optional.
  11. Bile Acids for digestion support and to help rid HS2. This is optional.
  12. 10 Grams of L-glutamine every day (may give headaches at start). This helps with a number of symptoms and recoveries.

Stay on the diet for at least two weeks, if you can then longer. After at least two weeks you can try introducing regular foods again, if you go back to PFS it means you didn’t normalize your microbiome and still have androgen receptor repression, you may need to go on the protocol for a month, or two months or however long it takes. For some it will be two weeks, others months, personally I may never leave this diet.
I have only left in the crucial items for this protocol. This means if you leave out any of them or break any rules then you are doing a different protocol and it may not work.
As for how I feel? I feel great and continue to get better every day. I no longer have to do high doses of zinc and baking soda to get rid of brain fog, I am starting to get sexual dreams and can feel stronger sexual urges happening. My libido is not back at 100% but it’s headed there. My body heat has returned and I have normal energy again. Basically I’m starting to function like a normal human being again. I am not cured right now but I know this is the path and you guys deserve to know sooner rather than later.
If you have any questions related to the food on the protocol the answer is that you can eat nothing except for what is on that list. Paleo and just Raw food instead of what I have listed in #1 might work but why waste time with something that hasn’t been tested? If you want to play around with it feel free to, but I would recommend just going hard-core for two weeks only kale and spinach and the meats.

I will keep updating with my progress, and if I return to PFS I will definitely let you know.

I’ll end this by saying I know some of you will want to argue and debate about the details and explanation of all of this. The explanation is irrelevant to the cure, if it works then it works. All the information I’ve stated here is available on the web, other scientists have already figured it out, I just put the pieces together. Some of you will come up with questions I can’t answer and that’s because I don’t have all of the answers. I know my satellite television works but don’t know exactly how, all I need to know is that it works the way I want it to. Once I’m recovered I’ll be leaving the boards and never talking about any of this again, I want to put this all behind me and start doing catch-up to the time I’ve lost. Good luck to everyone, I’ll keep updating.


Please share results with a ketogenic or high fat intake diet
My Long PFS Journey
Have you tried the CDnuts protocol?
Please share results with a ketogenic or high fat intake diet
#2

Are you ok with eggs or do they give you problems?


#3

Tyrosine is the key here. so thyroid. dont mess with 5htp try thyroid way. t4 also increases erotonin and dopamine and 5htp


#4

This is amazing if true, please let us know how you get on and if it works I will definitely do this. One thing I was wondering was is it safe to take that many probiotic pills in one day as surely that’s well above the recommended dose?


#5

By the way,I am not a doctor and this is not medical advice. Ask your primary care physician for advice on medical matters.


#6

Definitely interesting how all those things are connected. Personally I AM interested in how screwing with our hormones would lead to this overgrowth in bad bacteria. Also how long have you been on this regiment?

Thanks!


#7

Great thread. How long have you been on the restricted diet? Curious how many pounds you have lost on this diet? Many of us are skin and bones as it is.


#8

The proposed suggestion seems safe enough to me, but some sources are saying the hydrogen sulfide actually benefits erectile function.

webmd.com/erectile-dysfuncti … elp-for-ed


#9

Hi, in the video I posted it’s stated that Hydrogen Sulfide (HS2) is crucial to the body in small amounts and terrible in large amounts. We have larger amounts than normal, yet less than a CFS patient. A CFS patient has it off the charts.


#10

Where do you get Prescript Assist probiotic, VSL#3 probiotic and Mutaflor? I don’t remember seeing them in a health store. Do you need to order these probiotics online? Or do you get them with a prescription in a pharmacy? It’s also the first time I hear about a L-DOPA supplement and when I check online, most of the results are about Mucuna Pruriens.


#11

Hi BrongFogBoy

I was following a similar path earlier this year and can back you up.

I started the year in January with a 2 week fast, followed by the introduction of VSL #3 and Ecobalance (probiotics), my idea being that the fast would reset my digestive tract, and I could then replenish it with healthy bacteria. When I started eating again, I only ate healthy foods, no sugar, no alcohol. My diet mostly consisted of leafy vegetables like spinach, sweet potato, eggs and berries. I also added various supplements, such as Vitamin D, vitamin B6 (lowers prolactin), vitamin b12, ZMA (before sleep) and digestive enzymes (Digestive Aid). After this I began adding natural testosterone boosters like tongkat ali and tribulus.

This worked for me and I was almost fully normal for awhile, but I didn’t want to post a “success” story unless I felt like I was fully recovered. Unfortunately, I fell off the wagon and returned to unhealthy habits, like drinking alcohol and eating bad foods. I also haven’t cycled any herbs in awhile and I didn’t do much exercise, apart from occasionally running 3-4 miles.

I believe that it’s possible to return to a healthier, normal state with the protocol we’ve been following, but the biggest enemy is complacency. As soon as I began to feel like I was “normal” again, I returned to my old habits and PFS returned. I am not sure if this means the protocol I was on needs to be permanent, or whether my body was on the cusp of full recovery before I started rolling back again. It would surely be a challenge to follow such a strict protocol for the rest of my life.

I’d say right now I’m 50% better than I was. I had terrible debilitating pelvic pain, which since my protocol is mostly gone, and my libido is improved. At best, I would have said I was at 80-90% recovery. Seems to me that it’s that last 10% or so that is the hardest to overcome, which I think is where you’re at now. If you have Skype, add me: ukcjm1.


#12

Quick story. Before I did this protocol I had been eating the same thing 95% of the time: Avocado, chopped up with tomatoes, onions, and cayenne pepper sauce. I did not receive the recovery with that diet. I’m telling everyone this to stress that even things like tomatoes and onions can throw it off. Only stick to organic green leafy veggies, very clean meats, and water. Don’t leave out any of the supplements. Any questions about acceptable foods the answer is the above.


#13

Google search shows where you can buy all these products, you can get them from multiple venues and all legally in the united states or Canada. The VSL#3 you need to be careful because it must be packed with ice packs to ensure it stays good in the shipping. If you’re lucky enough to live by a place that sells it locally then get it there. Honestly I can’t remember where I purchased my VSL#3 from it was a few months ago. Prescript assist I believe I just got from Amazon or an online retailer. The rest I picked up at vitamin shoppe. The important thing to know about VSL#3 is it must always be cooled. Buy it from someone who will pack it with ice and immediately put it into the refrigerator, it’s a crucial supplement for recovery I believe and is delicate.

vitaminshoppe.com/p/solaray- … bDoM_lVhBc
I take 1 pill in morning 1 in afternoon

vitaminshoppe.com/p/c-1000-p … bDoYPlVhBc
I take 1 gram a few times a day

vitaminshoppe.com/p/doctor-b … bDocvlVhBc
I take 2 pills a day

vitaminshoppe.com/p/p-5-p-py … bDohPlVhBc
I take 1 pill a day

vitaminshoppe.com/p/l-glutam … bDskvlVhBc
I take at least 10 grams a day


#14

What about cruciferous vegetables (broccoli, cauliflower, etc…)? They have sulfurous compounds in them don’t they? Are they not recommended?


#15

Wow, BizzBee. Thank you for putting together such an organized & cohesive stream of thoughts/facts, for all of us to review. I truly believe you are on to something here and will be starting this protocol immediately (sans these exact mentioned probiotics as I will be waiting for them to come in).

I have been focused on gut health for months now via probiotics, fasting, vegan/all natural diet and zero process foods, but your post and it’s insights have compelled me to take things to the extremes necessary to achieve the results we all want.

As far as diet I understand that it basically boils down to Green Leafy Green (Ex. Kale, Spinach, Swiss Chard, Bak Choi? etc?), fully organic/grass fed/antibiotic free meats (Chicken, Beef, Lamb, etc.?) and a very clean water source, however for clarity’s sake, could you please list the exact foods that you have been eating during this protocol as to leave no room for error on my part. Seeing as the diet is so strict, I figure a list of the exact foods you have been eating would not be too much of a burden.

Thanks again BizzBee, I truly believe you are one to something here and am blown away by the full organization of this thought.


#16

I assume you are referring to organic grass fed meats as prescribed on the paleo diet. Is this correct? Is fish acceptable? Great to hear you have experienced improvements


#17

There’s lots of questions about what you can eat and what supplements you can take, the answer is I can’t be sure. It would be irresponsible for me to say that you can eat something or take something when I have never tried it myself and don’t actually know. If you don’t want to do the diet suggested then some of you are going to have to test it yourself and see if it works. I imagine after awhile this will be known as the cure but the diet and what you are allowed to eat will be refined. Maybe we will find that you can actually have some grains but only very small amounts, there may be another supplement out there that helps restore you even quicker, just understand I can’t answer those questions because I don’t know.

I will also mention that I felt fantastic without using any testosterone boosters whatsoever. Because I always responded poorly to Tribulus (felt bad or nothing at all) I used it as a gauge - now when I take it I don’t feel bad which was a great sign (exercise does not make me feel bad now either) but I am not currently taking it. My original post is just saying that if you want to then eventually you will be able to and it is a sign you are recovering; personally I’m probably not going to mess with my hormones ever again.


#18

I think it may be good practice for people to refer to Chi’s original post, he was the one who originally was cured by all of this. Basically he ate healthy and took specific herbs and probiotics and recovered, all I did was put a plausible scientific explanation behind it. You probably don’t have to be so strict on the diet as what I suggested, I’m only telling you what I did. However, it’s important to note that I also was on Progesterone cream for over a year and it didn’t seem to help in the long run, but we can’t be sure that didn’t fix something else as well.

I won’t be around often enough to answer questions (I’m very busy) so I’ve given you all I know in the first post. It seems eating healthy and taking a quality probiotic is key. If you PM me please don’t expect a quick answer at all and remember that I only know what I posted in the first post. Eat healthy, take a quality probiotic. Chi and mariovitali both seem to have recovered doing the same thing

Chi’s Post: viewtopic.php?f=27&t=5042
Mariovitali’s post: viewtopic.php?f=27&t=9478


#19

Congrats,I am really happy for you. But how do you know you arent recovered from the fecal transplant. You felt really good when you did it but you say its not necessary but maybe thats what gave you some beneficial gut bacteria back that only needed some time to grow and made you recover. Myself and i think a lot of others are ewting very clean but not really much is happening.


#20

Brainfogboy, how long have you been on the diet + probiotics/supplements? Do you really think you may stay on this diet forever?

Also as far as the first couple of days on this diet, did you find it to be very difficult? For whatever reason after 3 days of this protocol I am having very difficult time fending over cravings to former staples in my diet such and almond butter and granola. The VSL#3 and this strict diet really have things moving around in my guy (which is likely a good sign), but man are the cravings insane (worse than a fast). Just wondering how the first couple days were for you. Thanks,