31 minutes ago, Redrum16 said:

How long after your rounds of Accutane did you develop autoimmune symptoms? I did 6 months of Accutane when I was 19 and around 20-21 I developed gluten insensitivity as well as high blood pressure that really messed me up badly until I could figure out what was going on. 25 now.

I know fasting has been mentioned here plenty, but has anyone seen this?

https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/
http://www.naturalblaze.com/2016/05/fasting-like-diet-has-profound-effect-on-autoimmune-and-inflammatory-conditions-like-ms.html

Supposedly ~40% of your immune system is consumed by autophagy after a few days of ketosis, and then rebuilt by stem cells upon re-feeding. I'm currently going to be fasting for, say, 5 days every couple months and then eventually attempt to re-introduce gluten to see whether I'm still affected. Would like to throw an even more prolonged fast into the mix but I'll need to put on some more weight first before I'm comfortable with that.

Aside from the gluten intolerance, my health/vitality has steadily declined in the past year. Decline in energy, memory, motivation. Depression/anhedonia has hit me. Decline in libido.

My opinion on Accutane is simple: We know that it alters most everyone's gene expression. Some people are affected by this to varying degrees. How fucked up your gene expression has become will determine the severity and timeline in which you will experience negative symptoms. There's two ways to attempt a cure: Figure out Accutane's specificmechanisms of action and attempt to address thosespecifically,or, do everything in your power to revert your gene expression back towards a more youthful/healthy phenotype and hope that your symptoms are cured.

To me, this obviously means covering the basics such as exercise, sleep, nutrition. However, I also believe any other underlying health issues must be taken care of such as:
Infections
Parasites
Toxins/Heavy metals
Excess Iron - Blood donation, Chelation via Curcumin or IP6
Calcification - MSM, Magnesium, Silicon, K2, D3
Brain injuries

More drastic measures are probably needed as well, such as:
Prolonged water fasting - Tons of potential here but I believe multiple prolonged fasts would be needed for profound improvement
Peptides - GHK-Cu, BPC-157, Epitalon, Thymalin
Healthy stressors - Exercise, polyphenols, heat, cold, Wim Hof breathing, spicy food
Hyberbaric Oxygen Therapy
NAD+ boosters - For DNA repair
Iodine protocol?
CBD Oil?
High dose vitamins such as Vit C or Niacin?

Hopefully this triggers some discussion. This is more of a conversation starter than anything. There's a metric shit ton of quack information online and it's your own responsibility to do your research first.

I agree a lot with what you're saying here but plenty of people have tried the things you've mentioned to no avail. What I'm getting at is, I (and I'm sure a lot of other sufferers) don't have time to be finding proper supplement doses, to start fasting, etc. to MAYBE reverse these symptoms. What kind of life is that?

Autoimmune disorders are treatable. Curable? Eh maybe not yet. I just can't devote my life to a rigorous routine to find out that it isn't doing anything. I'll say it a million times. If I have to take a corticosteroid for the rest of my days in order to feel normal.. then you bet I will. After all, at the end of the day, I'm the one who is responsible for putting this poison in my body.

Another PFS recovery, always encouraging to read! 
 

Quote

2012-2013: using finasteride
January 2014: quit finasteride because of lowered libido, had extremely high libido for a few weeks, then I crashed

PFS symptoms: zero libido (none at all), numb genitals, shrunken genitals, depression

2014: trudging along in life with all these pfs problems, really had no idea what was going on
2015-2016: started the cdnuts/boost your lot T protocol. 

First did a four week juice feast and then started on a paleo diet with the supplements. Then I added in T boosting herbs, usually 10-12 of them which I rotated daily. I started carb backloading at the same time I started the T boosters. Then I started doing DHT prohormone cycles followed by PCT. In the middle of 2016 I started adding coffee in to my routine and my recovery really started ramping up. My depression that I had some days basically disappeared instantly at this time! I was feeling happier, more motivated, more social. I was doing better at work and in my personal relationships. I was so excited that the protocol was starting to work for me. I still had zero libido and numb genitals but I kept on the protocol because I new it could take time to heal.

At the end of 2016 I started researching around and I found that many PSSD sufferers had the exact same specific symptoms as me: zero libido and numb genitals. And I found that many PSSD sufferers recovered using a natural herb, licorice root. I knew I had PFS and not PSSD since I had never taken SSRI's but the symptoms these guys were describing were very similar to mine. I did a lot of research on the safety profile of the herb and then finally decided to add it to the cdnuts/boost your low T protocol. I started out just trying it on the weekends to see how I would react. I tried it one Saturday and felt kind of bad and I stopped taking it the next day. On Tuesday of that week I had what seemed like a miracle to me. The numbness down there went away for like 10-12 hours. I was shocked as I hadn't felt that in years! The next weekend I took the herb on Saturday and Sunday. Sure enough on Wednesday of that week the numbness started to go away and this time I could feel an actual libido! Once again I hadn't felt something like that in years! It was like something had switched on in my brain and it lasted about 36 hours.

So I continued playing around with this on the weekend and after a few weeks the numbness was pretty much gone and stopped coming back. I worked up to taking 1/4 teaspoon of 4:1 licorice root extract powder dissolved in a mug of hot water three times a day on Saturday and Sunday. I kept taking my T boosters and kept on my paleo diet with carb backloading. Kept working out and focusing on maintainingg a positive mindset. And every time in the middle of the week I would get a raging libido again like I was a teenager! Once I had worked up to this dosage, my libido started to stay at a higher level each week. It would increase in the middle of the week, then it would fall down a bit but it stopped falling back down to how I felt during my pfs years. I started feeling like a normal human being for once! Things stopped swinging between superhuman sex starved teenager libido and complete eunuch zero libido. It just stayed at a consistent level through the week and It actually stopped mattering when I took the herb. I wouldn't feel any change. 

One weekend arrived and I just never took the licorice root extract again and I've been living life ever since then. I stick to my diet and workout routine during the weekend but I'm back to beer and pizza with the guys on the weekend .

I'm so happy to say that the cdnuts protocol really works. It took me over two years and there wasn't a lot of progress in the beginning. But I hit a major upswing in the middle where my depression really seemed to get better. And then right around 2-2.5 years I finally got my libido back.

I think keeping faith in God really helped me along the way too.

It's really true that once you start making progress with sexual sides, it's like you make a big improvement, then you have a set back, then more improvement, and so on, until everything levels out.

Best of luck everyone!!!

http://www.swolesource.com/forum/post-finasteride-syndrome/3334-long-time-lurker-finally-got-my-health-back-doing-cdnuts-boost-your-low-t-protocol.html

He doesn't mention it, but licorice is a DHT inhibitor, and I think the way he's cycling it (let DHT rebound after after being inhibited) is potentially what's sorted him out here..

2 hours ago, Redrum16 said:

How long after your rounds of Accutane did you develop autoimmune symptoms? I did 6 months of Accutane when I was 19 and around 20-21 I developed gluten insensitivity as well as high blood pressure that really messed me up badly until I could figure out what was going on. 25 now.

I know fasting has been mentioned here plenty, but has anyone seen this?

https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/
http://www.naturalblaze.com/2016/05/fasting-like-diet-has-profound-effect-on-autoimmune-and-inflammatory-conditions-like-ms.html

Supposedly ~40% of your immune system is consumed by autophagy after a few days of ketosis, and then rebuilt by stem cells upon re-feeding. I'm currently going to be fasting for, say, 5 days every couple months and then eventually attempt to re-introduce gluten to see whether I'm still affected. Would like to throw an even more prolonged fast into the mix but I'll need to put on some more weight first before I'm comfortable with that.

Aside from the gluten intolerance, my health/vitality has steadily declined in the past year. Decline in energy, memory, motivation. Depression/anhedonia has hit me. Decline in libido.

My opinion on Accutane is simple: We know that it alters most everyone's gene expression. Some people are affected by this to varying degrees. How fucked up your gene expression has become will determine the severity and timeline in which you will experience negative symptoms. There's two ways to attempt a cure: Figure out Accutane's specificmechanisms of action and attempt to address thosespecifically,or, do everything in your power to revert your gene expression back towards a more youthful/healthy phenotype and hope that your symptoms are cured.

To me, this obviously means covering the basics such as exercise, sleep, nutrition. However, I also believe any other underlying health issues must be taken care of such as:
Infections
Parasites
Toxins/Heavy metals
Excess Iron - Blood donation, Chelation via Curcumin or IP6
Calcification - MSM, Magnesium, Silicon, K2
Brain injuries

More drastic measures are probably needed as well, such as:
Prolonged water fasting - Tons of potential here but I believe multiple prolonged fasts would be needed for profound improvement
Peptides - GHK-Cu, BPC-157, Epitalon, Thymalin
Healthy stressors - Exercise, polyphenols, heat, cold, Wim Hof breathing, spicy food
Hyberbaric Oxygen Therapy
NAD+ boosters - For DNA repair
Iodine protocol?
CBD Oil?
High dose vitamins such as Vit C or Niacin?

Hopefully this triggers some discussion. This is more of a conversation starter than anything. There's a metric shit ton of quack information online and it's your own responsibility to do your research first.

As you say, start with the basics. I personally don't believe that anyone as stuck with a protocol such as this for the time that is needed. I believe
we are talking years rather than weeks months. I know it must be hard to go on a difficult longterm protocol that may not yield results but what are the options - try risk free heath protocols or mess around with more drugs.
Have you looked at glutathione and the gaps diet?

On 7/12/2017 at 11:38 PM, Redrum16 said:

My opinion on Accutane is simple: We know that it alters most everyone's gene expression. Some people are affected by this to varying degrees. How fucked up your gene expression has become will determine the severity and timeline in which you will experience negative symptoms. There's two ways to attempt a cure: Figure out Accutane's specificmechanisms of action and attempt to address thosespecifically,or, do everything in your power to revert your gene expression back towards a more youthful/healthy phenotype and hope that your symptoms are cured.

To me, this obviously means covering the basics such as exercise, sleep, nutrition. However, I also believe any other underlying health issues must be taken care of such as:
Infections
Parasites
Toxins/Heavy metals
Gut microbiome imbalance
Excess Iron - Blood donation, Chelation via Curcumin or IP6
Calcification - MSM, Magnesium, Silica, K2
Brain injuries

More drastic measures are probably needed as well, such as:
Prolonged water fasting - Tons of potential here but I believe multiple prolonged fasts would be needed for profound improvement
Peptides - GHK-Cu, BPC-157, Epitalon, Thymalin
Healthy stressors - Exercise, polyphenols, heat, cold, hypoxia(Wim Hof breathing), spicy food
Hyberbaric Oxygen Therapy
NAD+ boosters - For DNA repair
Iodine protocol?
RSO/CBD Oil?
High dose vitamins such as Vit C or Niacin?

This.

just gonna go down the list here with a few things real quick.

11 hours ago, ehohel said:

12 hours ago, Vice-accutane said:

Has anyone ever tried prednisone ?
I think one should take it short term, long term usage can definitely trigger terrible side effects

Yep check my post history.

How would you compare prednisone to testosterone injections in how it made you feel or helped overall?

9 hours ago, Colinboko said:

12 hours ago, Vice-accutane said:

Has anyone ever tried prednisone ?
I think one should take it short term, long term usage can definitely trigger terrible side effects

Long term usage in extremely high amounts*

8 hours ago, Colinboko said:

guitarman also recently shared something that stated doses of 5 mg- 10 mg are safe to take long term without side effects.

Id like to be accurate here and sort of reword this abit.
Doses above 5mg per day might be harmful in some individuals. (so not that high of a dosage depending on the person)
Doses at 5mg, or between 5 to 10mg might possibly be safe for long term usage.
I'm still looking at other things besides or before prednisone atm.

6 hours ago, Redrum16 said:

Hopefully this triggers some discussion. This is more of a conversation starter than anything

it sounds like you've been looking and thinking about alot of things. Alot of what you have mentioned has been discussed. This is that endless loop . We need to get out of this loop. There seems to be evidence of something autoimmune or autoimmune like triggered by Accutane. Finding this evidence in multiple people might be a step in the right direction. Or at least it's a direction.
Maybe what happened is a combination of genetics and just plain bad luck.

I'm reaching out to a neuro immunologist tomorrow, so hopefully they will see me without a referral from another doctor. If I can get an appointment I'm going to try and get this test.

15 minutes ago, octopusfrog said:

I'm reaching out to a neuro immunologist tomorrow, so hopefully they will see me without a referral from another doctor. If I can get an appointment I'm going to try and get this test.

Thats great. Just one more person testing positive for this achr ganglionic antibody and I think that's something we can circle in on that might lead to other things.

4 hours ago, hatetane said:

As you say, start with the basics. I personally don't believe that anyone as stuck with a protocol such as this for the time that is needed. I believe
we are talking years rather than weeks months. I know it must be hard to go on a difficult longterm protocol that may not yield results but what are the options - try risk free heath protocols or mess around with more drugs.

nobody wants to take a drug, or inject themselves or spend thousands on supplements or spend years in the dark not knowing whats going on.
People don't have years to wait or figure it out. a lot of decisions made in the coming years can shape the rest of a person's life. There needs to be a sense of urgency.

Yep, testing has to be the way forward, that detailed list further up the page has some great ideas with plenty of merit but the "Self Diagnosis" angle is just too hard to pursue for most of us.

No one on this forum can be accused of not experimenting and the reason we've had to go down that path is because tanes damage is all over the place - no one fully understands its method of action nor does anyone know what it's actually done to us.

Having said that if we do have an "autoimmune" issue to deal with we need to get over the fact that tane caused it and try and treat the symptomslike any other person who has an autoimmune issue to deal with.

If along the way some blood tests etc show us to have some thingsin common this will help narrow that treatment down to make it more manageable I would hope.

1 hour ago, TrueJustice said:

Yep, testing has to be the way forward, that detailed list further up the page has some great ideas with plenty of merit but the "Self Diagnosis" angle is just too hard to pursue for most of us.

No one on this forum can be accused of not experimenting and the reason we've had to go down that path is because tanes damage is all over the place - no one fully understands its method of action nor does anyone know what it's actually done to us.

Having said that if we do have an "autoimmune" issue to deal with we need to get over the fact that tane caused it and try and treat the systems like any other person who has an autoimmune does...

If along the way some blood tests etc show us to have some thingsin common this will help narrow that treatment down to make it more manageable I would hope.

I completely agree. Finding the ultimate cause of this is obviously the goal and we should always keep researching, but to not treat the symptoms when we may have the power to do so, is just asinine in my opinion.

4 hours ago, MrNice said:

my symptoms got much much worse after the infection and "treatment" with antibiotics

This is what I've also mentioned. what happened because of Accutane treatment might not be specific to accutane. I posted a study awhile back showing accutane can basically act like a super antibiotic. This could then fall in line with some cfs/me theories. It could have caused some gut imbalance that triggered autoimmunity. Mario thinks it's the liver, I'm kind of leaning towards the gut.

25 minutes ago, guitarman01 said:

4 hours ago, MrNice said:

my symptoms got much much worse after the infection and "treatment" with antibiotics

This is what I've also mentioned. what happened because of Accutane treatment might not be specific to accutane. I posted a study awhile back showing accutane can basically act like a super antibiotic. This could then fall in line with some cfs/me theories. It could have caused some gut imbalance that triggered autoimmunity. Mario thinks it's the liver, I'm kind of leaning towards the gut.

Thats what I thought and I'm still open to it coming from gut but just like seeing any specialist they don't know what to do!!?

My gastroenterologist in the end flat out said I don't have a gut problem, shouldn't such a specialist know more than just gut bacteria theory's- isn't it their job to also know about "Autoimmune" issues??

I don't know, maybe I was unlucky and saw someone very dismissive, perhaps other gastroenterologist are happy to delve a bit deeper....

Just be cautious with hormones ... even thought a lot of us are desperate, there is always the possibility of actually getting worse than we are if we screw things up. By that I mean at least get a baseline hormone test before you start anything to help guide decisions.

Btw, did anyone become pale AF after tane? I'm white as a sheet. I started nasal steroid sprays (Nasonex etc) due to congestion, around the same time I stopped Accutane , so I was never sure exactly which agent caused this (I read one of the potential side effects of steroid nasal sprays is pale skin).

7 minutes ago, mikez said:

Just be cautious with hormones ... even thought a lot of us are desperate, there is always the possibility of actually getting worse than we are if we screw things up. By that I mean at least get a baseline hormone test before you start anything to help guide decisions.

Btw, did anyone become pale AF after tane? I'm white as a sheet. I started nasal steroid sprays (Nasonex etc) due to congestion, around the same time I stopped Accutane , so I was never sure exactly which agent caused this (I read one of the potential side effects of steroid nasal sprays is pale skin).

I was actually able to get a nice tan this summer! Surprising I know..

3 hours ago, TrueJustice said:

Thats what I thought and I'm still open to it coming from gut but just like seeing any specialist they don't know what to do!!?

My gastroenterologist in the end flat out said I don't have a gut problem, shouldn't such a specialist know more than just gut bacteria theory's- isn't it their job to also know about "Autoimmune" issues??

I don't know, maybe I was unlucky and saw someone very dismissive, perhaps other gastroenterologist are happy to delve a bit deeper....

Well.. Fecal transplant seems promising to repopulate good bacteria. Much more potent than taking pro/prebiotic orally apparently .
I found this reading interesting :
http://www.healingwell.com/community/default.aspx?f=26&m=3091210

Still, a " new " treatment with little experience only but it's worth checking out.
and Mikez I didnt notice a change in the color of my skin (yet)

1 hour ago, Vice-accutane said:

Well.. Fecal transplant seems promising to repopulate good bacteria. Much more potent than taking pro/prebiotic orally apparently .
I found this reading interesting :
http://www.healingwell.com/community/default.aspx?f=26&m=3091210

Still, a " new " treatment with little experience only but it's worth checking out.
and Mikez I didnt notice a change in the color of my skin (yet)

We've been over this before!!

Again, dismissed by gastroenterologist the very specialist who would advocate such a programme.

Perhaps you can search this out with your gastroenterologist but I'd say they'll want to do a colonoscopy and endoscopy first. Not so easy to just walk in and say I want a fecal transplant.
They'll want to try antibiotics first such as Rifaximin & Vancomycin before they'll even entertain a fecal transplant.....been there, done that.

3 hours ago, TrueJustice said:

We've been over this before!!

Again, dismissed by gastroenterologist the very specialist who would advocate such a programme.

Perhaps you can search this out with your gastroenterologist but I'd say they'll want to do a colonoscopy and endoscopy first. Not so easy to just walk in and say I want a fecal transplant.
They'll want to try antibiotics first such as Rifaximin & Vancomycin before they'll even entertain a fecal transplant.....been there, done that.

I think it depends on the Dr or place. There are some Gastro doctors that look at and recognize sibo, fibromyalgia, chronic fatigue with gut microbiota and the possible connections.

Menaquinones oxidize and reduce copper. Initially this sounds like increased toxicity, but this might be a good thing and makes the body less sensitive to copper.

I might have the blood test to prove it. This could be where high estrogen and low testosterone is coming from.

Menaquinone might have some interplay with zinc and iron as well.

Menaquinones might almost be a bacteria in itself.

This is looking at menaquinones or lack of possibly affecting gut microbiology or vice versa. from 2015.

Changes in Fecal Vitamin K Content are Associated with the Gut Microbiota
[Edited link out]
Though gut bacteria synthesize MK-n, relationships between gut microbiota composition, MK-n biosynthesis, and cardiometabolic health have not been examined.
Findings suggest that variability in fecal MKn content is associated with the gut microbiota, and that diet-mediated changes in gut microbiota composition may alter gut MK-n content. The implications for human health merit further investigation

On 7/14/2017 at 3:38 AM, guitarman01 said:

This is looking at menaquinones or lack of possibly affecting gut microbiology or vice versa. from 2015.

Changes in Fecal Vitamin K Content are Associated with the Gut Microbiota
[Edited link out]
Though gut bacteria synthesize MK-n, relationships between gut microbiota composition, MK-n biosynthesis, and cardiometabolic health have not been examined.
Findings suggest that variability in fecal MKn content is associated with the gut microbiota, and that diet-mediated changes in gut microbiota composition may alter gut MK-n content. The implications for human health merit further investigation

So this is talking about Vit K in fecal matter, what are they saying if you are low? Wouldn't they just put you on Vit K supplements?

Has anyone had a Vit K blood test at the very least?

Also still waiting on my carotid ultrasound results to see if any premature calcification might be going on that might agree with a k2 deficiency. And it sure as hell better not agree too much.

just found this.

Menaquinone Analogs Inhibit Growth of Bacterial Pathogens

Im about done with supplements.
One of the last ones im still wondering about is k2 or mk7.
k2 is still sort of mysterious in all the processes its involved in.
There is no direct testing for this.
it possibly interplays with bacteria.

These functions stand out to me for k2

• Coagulation factors (II, VII, IX, X), as well as anticoagulation proteins (C, S, Z). These Gla-proteins are synthesized in the liver and play an important role in blood homeo-stasis.
• Osteocalcin. This non-collagenous protein is secreted byosteoblastsand plays an essential role in the formation of mineral in bone.
• Matrix gla protein(MGP). This calcification inhibitory protein is found in numerous body tissues, but its role is most pronounced in cartilage and in arterial vessel walls.
• Growth arrest-specific protein 6(GAS6). GAS6 is secreted by leucocytes and endothelial cells in response to injury and helps in cell survival, proliferation, migration, and adhesion.
• Proline-rich Gla-proteins (PRGP), transmembrane Gla-proteins (TMG), Gla-rich protein (GRP) and periostin; whose precise functions are still unexplored.

I think depending on when you took accutane, it sort of freezes your body in time or stops growth. People have remarked how they still look the same or young after many years. Obviously this process might not be natural and might start to present with problems down the line.

Growth Arrest.

Looking at associations with P.Acnes and Menaquinones real quick.

The transcriptome analysis revealed how HPTs can impact the expression of genes, and thereby potentially affect phenotypes, primarily between clades. AlthoughP. acnesis a highly clonal species, small changes and even SNPs may have an impact on the phenotype. In the absence of effective means of adapting to new challenges, HPTs may serve as a simple method for inactivation of genes or even adjustment of expression levels.

example is HPT_37, which is located upstream of PPA1943, encoding a putative ubiquinone/menaquinone biosynthesis C-methylase (UbiE) that is required for biosynthesis of ubiquinone (coenzyme Q) or menaquinone (vitamin K2).

Propionibacteria - Page 41 - Google Books Result

Propionibacterium acnes - Wikipedia

I saw my new GP to get some recent blood results.    He thinks I have 'pyrrole disorder'  and also  low methylation  due to muy MTHFR gene variation.    He gave me a compound script for a bunch of high dose supps including  methylfoate,  p5p , zinc,  manganese,  and more.  

 I was researching and none of these conditions are supported by any peak medical bodies.  I'm  worried about creating more imbalances.    

I am low in  manganese  though (under range).  Perhaps I will look at adding this  to my current stack.   

I am also at the bottom of the range for zinc.            

On 7/12/2017 at 8:24 PM, guitarman01 said:

just gonna go down the list here with a few things real quick.

How would you compare prednisone to testosterone injections in how it made you feel or helped overall? Id like to be accurate here and sort of reword this abit.
Doses above 5mg per day might be harmful in some individuals. (so not that high of a dosage depending on the person)
Doses at 5mg, or between 5 to 10mg might possibly be safe for long term usage.
I'm still looking at other things besides or before prednisone atm.

Nothing was better than high dose prednisone.right now On those "good days" I'm assuming where inflammation is down I feel amazing, probably from high dose testosterone.

Im convinced this is something to do with DHT and or somewhere in the autoimmune disease catogory. If research ever shows this is an autoimmune disease I swear I'm gonna just off myself lol. Prednisone goes against everything I'm trying to accomplish with bodybuilding

when starting proviron after about 5 days my libido absolutely exploded. (High dose 100mg/day) I'm talking like i HAD to cum 4-6 times a day. My dick was getting so sore, mentally I felt good, nothing too noticeable. I'm now approching week 2, and a day ago everything just crashed. No libido, kept going soft during sex, didn't even cum after 3 hours. (This could be because I'm so sore from touching too much) but libido definitely took a major crash out of nowhere.

i am currently taking a fuckload of drugs/hormones I'll compile a list later for those who care.