I think PFS is an autoimmune disorder

Both animal and clinical studies have shown that the pathogenesis of multiple sclerosis (MS) is associated with the intestinal microbiota[76,77]. Three patients with MS who underwent FMT for constipation achieved normal defecation and virtually complete normalization of neurological symptoms, thereby improving their quality of life[76]. Borody et al[78] reported a case of a young female patient with myoclonic dystonia and chronic diarrhea. The symptoms had co-developed since she was 6 years old and progressed in severity to a plateau. FMT resulted in a rapid improvement in diarrhea symptoms, a 90% improvement in her myoclonus dystonia symptoms, and, as a consequence of restoring her fine motor function, improving her ability to perform tasks that require dexterity, such as holding cups and fastening buttons[78].

Iā€™m starting metronidazole and paromomycin on Friday. Might do another water fast if those donā€™t workā€¦ or maybe jump off Bosphorus bridge, Iā€™m really tired of not getting any results.

I havenā€™t been on this site much at all over the past 18 months but thought it worthwhile to respond to this thread.

I was pretty taken with the autoimmune theory for quite a while after I got PFS. It fits on quite a few fronts and seemed to explain the majority of my symptoms and crash etc. So, I started seeing a urologist near me who operates out of a large hospital and heads up the urology program at a local universityā€™s medical school. He was very receptive to trying to find something to alleviate my symptoms and thought the autoimmune theory was at least plausible. He treats a large number of women with a disorder that manifests in a few different ways with a sort of murky etiology. He has seen some success with some of these patients by suppressing their immune systems with a drug called cyclosporine, which he uses at fairly low doses. He started me on it in June 2014 and I took it for a number of months. At first, I thought it was possibly affecting my symptoms positively but after a number of months I decided to come off of it because I didnā€™t feel like it was making much of a difference, if at all.

Obviously, one trial of a particular immunosuppressant canā€™t conclusively rule out an autoimmune cause as the root to PFS but it doesnā€™t help itā€™s case. Cyclosporine, even at low doses, is a powerful immunosuppressant and theoretically should have helped my symptoms if they were being caused by my immune system.

Quite interesting. Thank you for taking the time to post back. Every little bit of information helps.

It amazes me that so many people react so differently. No wonder doctors have a hard time believing us ! Thereā€™s nothing solid on what we can build on.

Here is another pfser with a recovery from flu

ā€œthe first day only i had fever, generally my stomache was upset for more than a week but the 3 first days was hell.I was feeling like i had eaten elephants, very heavy stomache, it was an influenza that many people got it here.
Since i recovered from this, i have morning wood every day, i even woke up during one night because of my wood. I need to masturbate at least 2 times every day. Last saturday i had sex 2 times and later at night i mastaurbated again cause i couldnt sleep.
I feel strange, i m in agony , i m wondering is that it ? Will i continiew tomorrow (every day that passes) to be like that? Or its just a temporary thing?ā€

Nagarl 38 Thu Nov 19, 2015 10:10 pm Greece

The problems with anti-DHT autoantibodies are 1. Wouldnt start on Finasteride? (although perhaps this is something to do with finasterideā€™s interaction with the 5aR2?) 2. No raised LH/FSH, which was the case in the research paper. 3. Hairloss continues (although there is a relation between, DHT, the immune system, inflammation and hairloss).

Due to these flaws to this theory i believe its not purely autoimmune but has a VERY strong immune component. There is some very exciting studies going on for Chronic Fatigue Syndrome that are showing that it is an autoimmune condition. The latest study implicates the immune system, at least in some cases. Rituximab wipes out most of the bodyā€™s B-cells, which are the white blood cells that make antibodies

newscientist.com/article/dn ā€¦ -syndrome/

Whats interesting is with CFS patients they tend to be on top of the world just like us then in 24hrs wake up with severe CFS and stay like that for decades. PFS is very similar and if there is evidence supporting an autoimmune component to CFS then its possible we are dealing with some sort of immune component aswell.

I am spending some time compounding various anecdotes of males with PFS that point towards a possible immune component to the condition. Here is what i have so far. These men have nearly full recoveries of libido when suffering from a virus. Before the virus they are basically assexual. This is fascinating because TRT cannot help most of us but a flu can?

"the first day only i had fever, generally my stomache was upset for more than a week but the 3 first days was hell.I was feeling like i had eaten elephants, very heavy stomache, it was an influenza that many people got it here.
Since i recovered from this, i have morning wood every day, i even woke up during one night because of my wood. I need to masturbate at least 2 times every day. Last saturday i had sex 2 times and later at night i mastaurbated again cause i couldnt sleep.
I feel strange, i m in agony , i m wondering is that it ? Will i continiew tomorrow (every day that passes) to be like that? Or its just a temporary thing?

so after 11-12 days of recovering from flu seems pfs got back
damn! "
-nagarl-

ā€œi experience this reaction while having the flu. its quite common around hereā€
-xpitardo-

ā€œThe only time Mew has ever ā€œrecoveredā€ was while he was sick with a stomach virusā€
-JQD-

ā€œOk. So I have had the flu the past 24 hours. I was feeling real good for a few days prior to actually coming down with the symptoms hard core. I actually feel almost 100 percent right now from a PFS perspective. There has to be some correlation here. I feel like my body temperature has been elevated during the past 24-36 hours. My body has completely changed from a pfs perspective as well.
My balls are virtually back to pre fin state, abs are rock solid, all elements of gyno have disappeared. I feel tight. I feel strongā€
-proscarred-

ā€œI experienced strong libido and erections when i was ill/ flu.ā€
-bluecloud87-

ā€œAbout a week ago, I had bad flu, and my temperature rose to 101.9 for roughly 5 or so hours. And, in fact, my libido was surging at this time.
My imagination was running wild in a way that it had not in a very long timeā€
-leon-

Another common occurrence with PFS is low white blood cell count. This is quite interesting because most men with PFS report that they never get sick anymore. This seems like a possible indication towards immune dysregulation. Here are some topics about WBC from the forums

viewt ā€¦ f=1&t=8489
viewt ā€¦ 92&start=0
solvepfs.com/viewtopic.php?f=5&t=885

Iā€™ve had the flu and many colds multiple times since getting PFS back in July 2015. It seems as if my immune system is much weaker than it was prior to PFS, when I would get maybe one cold a year that would last no more than a week.

I can say that I have NOT seen improvement/recovery with any of the flus/colds Iā€™ve encountered over the last 6-7 months, and some of them have been quite brutalā€“often lasting several weeks.

I would avoid any unnecessary vaccines. Just do a google search about flu vaccine causing blindness and paralysed people. I believe thatā€™s becasue of AI reaction.
Necessary and mandatory vaccines are a must of course and you cannot risk not taking them.

In my case, any attempt to increase testo causes AI reaction. sometimes it take time, but it is for sure. I believe a lot of sever symptoms reported here by people is becasue of treatments they take to increase testo. There is a high chance that some of your symptoms are also because of reaction to treatments to increase testo. Try to think about your conditions before and after trying testo boosting drugs. I am sure you see changes in your symptoms.

Here is a CFS story

" It was the third Tuesday in April 1987. I had to go to work
around 19-10:30, so not early. I overslept, because I was feeling sick - sore throat, headache, tired. I thought I was coming down with the flu. My roommate had been sick. Iā€™ve never been the same since. I was fine on Monday."

Doesnā€™t that sound too fucking familiar with pfs? How many times have we heard PFS member stories of guys feeling ill waking up with pfs. And its Like a Switch is off.

donā€™t get confused im not saying we have CFS but there is some evidence it could be a similar situation.

i also read this which is about a CFS researcher

She believes that the underlying cause of ME/CFS and other similar diseases is chronic, persistent infection which has overloaded and worn down the immune system causing immunodeficiency/chronic immune dysfunction/activation/autoimmunity and that the way to treat these illnesses is by taking combinations of anti infectives to remove the underlying infections as well as supportive therapy to help the immune system to come back to normal and then it can keep pathogens in check on its own. She said that the only reason when this approach doesnā€™t work is because we miss finding and treating a pathogen or that the anti infectives to treat a pathogen arenā€™t very effective and it perisists.

Guess what Bongfogboy did??

HE USED ANTIFUNGALS WHICH KILL INFECTION.

Surely you guys see some merit to it

Why

I cannot speak English. Iā€™m sorry.
I think that it is PFS = Autoimmune Disorder.
I was the person who caught cold frequently.
However, three years pass after PFS cost it, but never catch cold.

I have muscle convulsions and muscle weakness other than a sexual desire decline and ED.
The weight and muscles decrease even if they take a lot of meals.
I intend to try a fast, may I fast with the body which the weight and muscle decrease even if they eat?
And a muscular workout is a hobby, may I make a muscular workout while fasting?

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DO NOT exercise while fasting. You will lose muscle at an accelerated rate if you workout during fast. Try to rest as much as possible. Only do short walks as an exercise.

I wonder if prostaglandins play a role in this:
stm.sciencemag.org/content/4/126/126ra34

Antifungals cause an increase in prostaglandin synthesis (read ā€œside effectsā€):
en.wikipedia.org/wiki/Amphotericin_B

ncbi.nlm.nih.gov/pubmed/3309074

ncbi.nlm.nih.gov/pubmed/3140613

Some of the functions of prostaglandins:
cause constriction or dilation in vascular smooth muscle cells
regulate hormones
control cell growth
acts on thermoregulatory center of hypothalamus to produce fever
etc.
en.wikipedia.org/wiki/Prostaglandin

It would explain so many of our syptoms, ed, messed up hormones, muscle, bone and subcutaneous fat loss, spasms, not having a fever or feeling better when you have a fever, etc.

Thank you vanquish.

There is a question elsewhere.
During the period of the fast, should I take in vitamins with a supplement?
Or should I be going to completely have only water?
I began a fast

Only water. Do these tests every 7 days:

ALT
AST
LDH
Glucose
Hb A1C
BUN
Creatinine
Uric Acid
Albumin
Calcium
Magnesium
Potassium
Sodium

Stop fasting if any of those tests look bad.

Thank you vanquish.
It is the fast fourth day.
There is no improvement.

Someone mentioned here that sleep deprivation suppresses immune system so i had little amount of sleep for a couple of days and last night i slept for 2-3 hoursā€¦ And yes, I had pretty good libido today, more ejaculate and after one beer my cognitive ability came back pretty much ā€¦ So, it is just one more argument in favor of autoimmune theory. I even had spontaneous erection that really reminded me of pre-pfs life because it has not happened for a long time but it didnā€™t last long, i just felt some force within kicking it back to nothingness ā€¦
I am 99% sure this is autoimmune (judging from my experience) but unfortunately, it doesnā€™t bring me any hope ā€¦ One thing I havenā€™t tried is removing gluten, so i should probably give it a chance ā€¦ Before all hell breaks lose ā€¦

Hi

Thanks for your anecdote. I have been sick once in my 4 years of PFS and man i felt good. I was vomitting and bed ridden but didnt care because i had full libido and cognition back.

My doctor im working with deals with all sorts of problems and he beleives that autoimmune disease is caused by chronic stealth infections. He says it involves 6 stepsā€¦ identifying the infection, nutrition, kill the bug, dissolve the biofilm, boost the immune system and repair the mitochondria.

Autoimmune diseases are characterised by 3 things:

  1. A chronic infection.
  2. An immune system over responding to that chronic infection.
  3. Tissue damage caused by the immune system.

Our immune system has 2 strategiesā€¦

  1. Special Forces for close quarter combat. Not much use when the enemy is hiding and
  2. Aerial bombing. The problem with bombing has always been indiscrimamnt damage. That will be made worse if the enemy is wearing a similar uniform to our troops. It may be that why the immune system sometime attacks the myelin sheath (MS), the joints (rheumatoid arthritis) the muscles and ligaments (lupus), the thyroid (Hashimotos)ā€¦ is that the cells of those tissues are antigenically similar to the outer coat of the organism.

Note too that these infections have developed 2 very powerful tools to prevent attack:

  1. Biofilms- a layer of mucous they cover themselves in to prevent antibiotics getting to them.
  2. They damage our mitochondria. Our immune syetm is very energy dependent. Does not matter how many tanks and fighter planes we have if there is no petrol to fuel them.

ā€œNow, researchers at Temple University School of Medicine (TUSM) have shown that bacterial communities that form biofilms play a role in the development of the autoimmune disease systemic lupus erythematosus ā€“ a discovery that may provide important clues about several autoimmune ailments.ā€

Lessons:

  1. Anybody with an autoimmune disease should be tested for a chronic infection.
  2. Treatment of a chronic infection should involve biofilm dissolution and mitochondrial repair.
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It is the fast sixth day.
Unfortunately there is no effect really.
One of the side effects of my PFS has muscle weakness.
It is difficult to walk and seems to become the wheelchair.

If there will be an improvement, it is expected to be felt after fast.