7 hours ago, defoeyido said:

Man I am struggling so badly after accutane

Alot of this for me seems to be inducible. not really specific to accutane, fin, or ssri's.Obviously they were a initial trigger though.

Im still pretty confident something will get figured out. We know too much, have too much in common.

I get most angry at the passage of time. Time that cant be replaced.

Unexpected Evidence of a Brain Microbiome

July 4, 2019

Guitarman01 - Wouldn't k2 deficiency be causing osteoporosis? People seem to have more bone now? Wouldn't k2 deficiency reduce bone density?

My bone density is normal just more calcified in alot of areas, like tendon, ligaments, and spine. Basically hyperostosis.

That's why I'm not sure about getting more k2.

I've cried wolf on this forum before by declaring that I was sure I'd figured out my Accutane issues, only to eventually realize that I'm still far off from puzzling it all out. It's probably common among people trying to investigate confounding health issues. However, I think I'm much closer than I ever have been to untangling this puzzle. At the end of the day I believe my problems revolve around massive amounts of HISTAMINE in my system.

I think I may have Mast Cell Activation Syndrome with an assosciated salicylate, benzoate etc. intolerance. The end result is a lot of mast cell degranulation and high levels of histamine among other things.

I think I already had this issue before taking Accutane but Accutane somehow made it far worse. My family shows signs of having a problem with their phenol-sulfotransferase-P enzyme which metabolizes phenols (like salicylates), amines, and some drugs. Phenols are then free to trigger mast cells to degranulate and release histamine etc. This could potentially also explain why I reacted so badly to Accutane if my phase II detoxification pathway (of which the phenol-sulfotransferase-P enzyme is a part of) doesn't work optimally and I wasn't able to clear the drug from my system before the next dose, resulting in an accumulation of Accutane in my system.

Histamine can easily explain why after Accutane I could no longer drink juice on an empty stomach because of the acid pain - because even at low levels histamine increases stomach acid. This is what I believe led to my stomach ulcers and also fat malabsorption. This could be why post Accutane I'd experience intense itching when I'd go from a cold temperature to a really hot one. I think this is why when I eat spaghetti sauce, not only does my face flush super red but I experience low blood pressure. This could also explain my seborrheic dermatitis because I read a study where they found 2 or 3 times the amount of histamine in the scalps of people with seborrheic dermatitis. I also believe that mast cells are behind my accelerated hairloss. When mast cells degranulate they also release protaglandin D2. PGD2 is a big part of the cascade of events involved in hair loss.

I also think I have small intestine bacterial overgrowth (SIBO) and it's common for people who have it to also have issues with histamine. Some bacteria produce histamine so if you have a dysbiosis or an overgrowth that's one way to end up with more histamine. Also, if you have the associated leaky gut, that's more histamine that's able to leak into your system.

Histamine explains why all of my symptoms got worse in the past 2 and a half years - right when I changed my diet to a high protein one which included a daily meal of a bacon and egg wrap with chipotle sauce and cheddar - basically a histamine tornado. I'd also eat a chicken bacon ranch wrap for dinner so I was just eating cured meat day and night. My daily redbull full of caffeine wasn't helping as caffeine blocks the Diamine Oxidase enzyme which is responsible for breaking down histamine. So I was basically consuming tons of histamine while simultaneously blocking the enzyme that breaks it down.

I've now ordered a diamine oxidase enzyme supplement and am trying to get my hands on mast cell stabilizers. The only issue is that most natural mast cell stabilizers are chock full of phenols... which seem to cause mast cells to degranulate in me and are thus pointless.

I gotta say that trying to treat all this has had the unexpected benefit of drastically lowering my social anxiety.

10 minutes ago, Recreant said:

I've cried wolf on this forum before by declaring that I was sure I'd figured out my Accutane issues, only to eventually realize that I'm still far off from puzzling it all out. It's probably common among people trying to investigate confounding health issues. However, I think I'm much closer than I ever have been to untangling this puzzle. At the end of the day I believe my problems revolve around massive amounts of HISTAMINE in my system.

I think I may have Mast Cell Activation Syndrome with an assosciated salicylate, benzoate etc. intolerance. The end result is a lot of mast cell degranulation and high levels of histamine among other things.

I think I already had this issue before taking Accutane but Accutane somehow made it far worse. My family shows signs of having a problem with their phenol-sulfotransferase-P enzyme which metabolizes phenols (like salicylates), amines, and some drugs. Phenols are then free to trigger mast cells to degranulate and release histamine etc. This could potentially also explain why I reacted so badly to Accutane if my phase II detoxification pathway (of which the phenol-sulfotransferase-P enzyme is a part of) doesn't work optimally and I wasn't able to clear the drug from my system before the next dose, resulting in an accumulation of Accutane in my system.

Histamine can easily explain why after Accutane I could no longer drink juice on an empty stomach because of the acid pain - because even at low levels histamine increases stomach acid. This is what I believe led to my stomach ulcers and also fat malabsorption. This could be why post Accutane I'd experience intense itching when I'd go from a cold temperature to a really hot one. I think this is why when I eat spaghetti sauce, not only does my face flush super red but I experience low blood pressure. This could also explain my seborrheic dermatitis because I read a study where they found 2 or 3 times the amount of histamine in the scalps of people with seborrheic dermatitis. I also believe that mast cells are behind my accelerated hairloss. When mast cells degranulate they also release protaglandin D2. PGD2 is a big part of the cascade of events involved in hair loss.

I also think I have small intestine bacterial overgrowth (SIBO) and it's common for people who have it to also have issues with histamine. Some bacteria produce histamine so if you have a dysbiosis or an overgrowth that's one way to end up with more histamine. Also, if you have the associated leaky gut, that's more histamine that's able to leak into your system.

Histamine explains why all of my symptoms got worse in the past 2 and a half years - right when I changed my diet to a high protein one which included a daily meal of a bacon and egg wrap with chipotle sauce and cheddar - basically a histamine tornado. I'd also eat a chicken bacon ranch wrap for dinner so I was just eating cured meat day and night. My daily redbull full of caffeine wasn't helping as caffeine blocks the Diamine Oxidase enzyme which is responsible for breaking down histamine. So I was basically consuming tons of histamine while simultaneously blocking the enzyme that breaks it down.

I've now ordered a diamine oxidase enzyme supplement and am trying to get my hands on mast cell stabilizers. The only issue is that most natural mast cell stabilizers are chock full of phenols... which seem to cause mast cells to degranulate in me and are thus pointless.

I gotta say that trying to treat all this has had the unexpected benefit of drastically lowering my social anxiety.

Have you tried probiotics?

11 minutes ago, Calcified said:

Have you tried probiotics?

I have but they don't help me - they actually make things worse, which makes sense if I have the problems that I think I do.

4 hours ago, Calcified said:

Guitarman01 - Wouldn't k2 deficiency be causing osteoporosis? People seem to have more bone now? Wouldn't k2 deficiency reduce bone density?

My bone density is normal just more calcified in alot of areas, like tendon, ligaments, and spine. Basically hyperostosis.

That's why I'm not sure about getting more k2.

Yeah interesting, I feel like Ive got unwanted bone growth or calcified issues. Plus too many have had Vit D issues for this to be coincidental I think.

The histamine angle is interesting, I sneeze a lot and actually feel really good when I do - It eases the head tension and light sensitivity issues, I hope people have success who are investigating this path.

I still believe in getting rid of the nasty bacteria regardless of what you think you have going on- its something we all have the power to do and is a step in the right direction. I have much less gut pain with all the work Ive done although I still have to take pariet for reflux but eventually kinesiologist thinks hell get me off it.

Break those gut biofilms down and clear the garbage out!!

13 hours ago, TrueJustice said:

Yeah interesting, I feel like Ive got unwanted bone growth or calcified issues. Plus too many have had Vit D issues for this to be coincidental I think.

The histamine angle is interesting, I sneeze a lot and actually feel really good when I do - It eases the head tension and light sensitivity issues, I hope people have success who are investigating this path.

I still believe in getting rid of the nasty bacteria regardless of what you think you have going on- its something we all have the power to do and is a step in the right direction. I have much less gut pain with all the work Ive done although I still have to take pariet for reflux but eventually kinesiologist thinks hell get me off it.

Break those gut biofilms down and clear the garbage out!!

My stomach pain has improved on probiotics.

Also something else I've noticed, it's alot harder to gain weight on probiotics.

I feel like it has killed my brain cells honestly.

Since I came off accutane, my brain just feels so slower, softer, devoid of the ability to think critically, devoid of passion and enjoyment. I feel like it's made me simple minded in many ways

I don't understand how it can fuck with my brain so badly. I feel like I can never recover the old me. I've regressed as a person because of it. Fuck accutane

Viome.

So I sent this in. it will be about two weeks for results.

It test down to the strain every bacteria in your stool. not only bacteria but viruses and fungi as well.

it could also possibly tell if something is more active then in a normal population.

this is newer as of a couple years ago, more advanced than ubiome.

Has anyone had this testing on propeciahelp @Dubya_B?

I'll post on my results. pretty crazy you could actually test before and after, changes in the microbiome after taking some of these drugs.

Don't know if this helps but my doc tested my stool for parasites and it came back negative.

I did the same and it came back negative too.

however the kinesiologist detected parasites and Ive now gotten rid of them. The poo test was inconclusive.

@guitarman01 No one on propeciahelp has had the Viome test performed, or at least no one has mentioned it.

There have been many results posted there over the years of different tests pertaining to microbiota, but nothing consistent was found.

4 minutes ago, Dubya_B said:

No one on propeciahelp has had the Viome test performed, or at least no one has mentioned it.

Thanks. They advertise helping with diet mostly, but im not looking at this for that.

@TrueJusticeand @CalcifiedI believe this is much more advanced then what you had tested.

Im just going to copy and paste real quick from their website.

Viomes technology captures everything that is happening in the gut microbiome the key word here is happening.

Our metatranscriptomic sequencing technology was developed in the prestigious Los Alamos National Laboratory for national security. Viome is the only test on the market with the power to see every strain, the activity of these organisms, and whether they are producing nutrients or toxins. It took 15 years to sequence the human genome. We are now sequencing AND analyzing your gut microbiome which includes identifying trillions of active microbes, and their pathways, and functions in just a few weeks!

This is what the results are going to look like. it could be pretty informative.

Thats good info Guitarman - much appreciated

I know my kinesiologist experimentson himself getting these types of tests done - keeps him in the loop for when he might get a patient to do one!!

He was telling me he recently did one and tested for cucumber bacteriaof all things - whatever the hell that means Ill have to ask, I think the point is many of these tests are now very thorough in what they can actuallyfind - providing you do them via certain companies that is.

This one looks like a really good one that youve posted!!

I should add, youre right in that this one looks super advanced- beyond just getting your poo tested for bacteria etc. This could be a real game changer in detecting exactly whats happening in the gut - with everything good and bad....

Has anyone here trying Medi or Vemoherb's Tribulus Terrestris protocol? Just saying, check out the thread on propeciahelp, we have several improvements along with permanent recoveries with Tribulus. Wish you all luck, will update here if my protocol improves me. It can make you worse or better or even can cure you! Please do your own research before using something.

- Those brands have the correct levels of Protodioscin in it. If you use another brand which i also did, it won't work. It must be balkan Tribulus with Protodiscin in it.

What issues are you dealing with specifically Saffron?

Apart from sexual are you having HPA issues, gut issues etc etc?

That protocol could be great for sexual issues but not necessarily any good for other stuff yeah - remember our issues spread far and wide so some detail would be great on what youre targeting- cheers

I thought Id give another update.

While June seemed to be a regression at times (especially the early oart of the month) I am definitely experiencing certain aspects of a recovery of libido, and especially in terms of the degree I enjoy masturbation (unfortunately not in a place where sex is readily available, let alone be in a mindset for a relationship). Mental side effects havent been too great at times though, but that might be more because of my horrible sleep schedule atm (3:30-10am).

23 hours ago, cnb30 said:

I thought Id give another update.

While June seemed to be a regression at times (especially the early oart of the month) I am definitely experiencing certain aspects of a recovery of libido, and especially in terms of the degree I enjoy masturbation (unfortunately not in a place where sex is readily available, let alone be in a mindset for a relationship). Mental side effects havent been too great at times though, but that might be more because of my horrible sleep schedule atm (3:30-10am).

On 7/8/2019 at 7:21 AM, defoeyido said:

I feel like it has killed my brain cells honestly.

Since I came off accutane, my brain just feels so slower, softer, devoid of the ability to think critically, devoid of passion and enjoyment. I feel like it's made me simple minded in many ways

I don't understand how it can fuck with my brain so badly. I feel like I can never recover the old me. I've regressed as a person because of it. Fuck accutane

it wasn't too long ago that I was where you guys are at. i can say it does get better with time, it's just very slow. some things I wish I could go back and change was to avoidself medicatingwith alcohol for several years afterwards(which isn't a bad drug in the short term, it works fairly well temporarily) to live with the neurological + physical side effects. However, utilizing the power of natural whole foods and fruits, high intensity cardio vascular exercise, jumping into a hyperbaric oxygen chamber for a month or two (7-15PSI), getting endocrinology in check, trial and error the supplement market (i know many of us post taners have gone through 50+ different kinds), stick with what works, try to bring your body to homeostasis naturally. Last resort I would say try outCerebrolysin. I did my 20 days and it was only A+ positive, I am preparing for the next trial, perhaps longer. Look in to arginine, lions mane, psilocybin combo. Running long distance stimulates anandimide (serotonin based). Get that brain back up and firing. It's all about timing, like a car. Deep meditation. Massage therapy.

I still have to work out the sleeping issues 10+ years, it's gotten better but not like it was, looking in to Zyrem (GHB).

6 hours ago, macleod said:

 

 

it wasn't too long ago that I was where you guys are at. i can say it does get better with time, it's just very slow. some things I wish I could go back and change was to avoidself medicatingwith alcohol for several years afterwards(which isn't a bad drug in the short term, it works fairly well temporarily) to live with the neurological + physical side effects. However, utilizing the power of natural whole foods and fruits, high intensity cardio vascular exercise, jumping into a hyperbaric oxygen chamber for a month or two (7-15PSI), getting endocrinology in check, trial and error the supplement market (i know many of us post taners have gone through 50+ different kinds), stick with what works, try to bring your body to homeostasis naturally. Last resort I would say try outCerebrolysin. I did my 20 days and it was only A+ positive, I am preparing for the next trial, perhaps longer. Look in to arginine, lions mane, psilocybin combo. Running long distance stimulates anandimide (serotonin based). Get that brain back up and firing. It's all about timing, like a car. Deep meditation. Massage therapy.

I still have to work out the sleeping issues 10+ years, it's gotten better but not like it was, looking in to Zyrem (GHB).

Thank you Macleod

As much as I feel good about getting on top of Bacteria/Virus/Fungus issues which have lead to increased energy and wellbeing, where I feel the most frustrated still after 20 years is with cognitive function. Its better but there is still work to be done!!

Can you please shed some more light on Cerebrolysin - how does one obtain it, how do you take it, are there any side effects??

As youve stated, there are other things youd consider first but none the less some more info would be great!!

Ill run by my kinesiologist. Im also interested in Ginsengbut theres just so many supplements out there and Im determined not to self medicate again if I can help it - best for me to at least discuss with my practitioner and get his thoughts.

On 6/27/2019 at 1:00 AM, Dubya_B said:

@guitarman01, you may be interested in this information about Accutane and dry-eye syndrome: https://forum.propeciahelp.com/t/anti-androgen-effects-of-accutane-dhea-as-potential-treatment-for-post-drug-dry-eye-syndrome/30964

 

DHEA was discussed in one of the cited studies in that thread as a treatment for long-term dry eye syndrome caused by Accutane

Hi@Dubya_B

I just created this thread:

https://www.acne.org/forums/topic/384386-low-hormone-levels-after-accutane/

Do you have dry eye and low DHEA? I do.

And what about DHEA supplements? Last year an endocrinologist suggested me taking DHEA supplements. Not because of dry eye, but just because DHEA was low. But I didn't takeit.

A testosterone cream for the eyes was also tried by some doctors, I think.

If you have something to comment about my case, please do it in my thread. This thread is too long and there are millions of cases, so it is impossible to find specific information.

@AkosThanks for posting those tests. osteocalcin a vitamin k dependant protein hormone, also regulated by vitamin D.

So you had a bone density scan? where was the bone loss? hips? spine? neck?

I think something like this is most definitely plausible. I think I could have been very wrong about bifido, it reduces vitamin k, has been shown to translocate to the stomach in cases of reduced acid secretion,and its presence might be a factor for successful anti androgen therapy for prostate cancer.

Probiotics to improve testicular function (Andrology 5:439444, 2017) a comment on mechanism of action and therapeutic potential of probiotics beyond reproduction

5 hours ago, guitarman01 said:

@AkosThanks for posting those tests. osteocalcin a vitamin k dependant protein hormone, also regulated by vitamin D.

So you had a bone density scan? where was the bone loss? hips? spine? neck?

 

I think something like this is most definitely plausible. I think I could have been very wrong about bifido, it reduces vitamin k, has been shown to translocate to the stomach in cases of reduced acid secretion,and its presence might be a factor for successful anti androgen therapy for prostate cancer.

Probiotics to improve testicular function (Andrology 5:439444, 2017) a comment on mechanism of action and therapeutic potential of probiotics beyond reproduction

K. Tremellen

K. Pearce

First published:15 September 2017

A recent study published in this journal (Maretti & Cavallini,2017) reported significant improvements in sperm quality and testosterone levels in infertile men using a proprietary probiotic/prebiotic (Flortec) therapy. While previous animal studies had also reported similar improvements in testicular function with probiotic therapy (Poutahidisetal.,2014), this latest studyis the first to confirm such a response in men in a wellconducted placebocontrolled setting. The authors hypothesized that these improvements may be mediated by normalization of subtle alterations in hypothalamicpituitary function, an antioxidant effect and possibly even improvements in the prostatic microenvironment. However, the reported data only provide direct evidence for improvement in pituitary function (increase serum LH and FSH). The purpose of this letter is to inform the readership of an important alternative potential mechanism of action for Flortecmodulation of the gut microbiome and inflammation.

Recently, we published the GELDING theory (Gut Endotoxin Leading Decline In Gonadal function) linking gut health with testicular function (Tremellen,2016). Obesity, a Western diet, psychological stress and a lack of exercise, all common maladies of modern life, have been associated with impaired intestinal mucosa barrier function (leaky gut), resulting in the passage of endotoxincontaining gut bacteria into the systemic circulation. Endotoxin is a powerful immune stimulant, with recent data from our own group linking endotoxin activation of the immune system with impaired Leydig and Sertoli cell function (Tremellenetal.,2017). Multiple studies have previously reported an association between male hypogonadism and inflammation, but the GELDING theory is the first to suggest that gut bacteria may be the trigger for inflammation and impaired testicular function. The Flortec RCT results provide additional support for this theory.

Experimental administration of endotoxin to animals is known to directly inhibit Leydig cell steroidogenesis, while also impairing pituitary LH drive (Tremellen,2016). Therefore, it is plausible that a breakdown in gut wall integrity caused by poor lifestyle will result in bacterial translocation, systemic inflammation and hypogonadism in these men. The consumption ofLactobacillus paracaseiprobiotic bacteria, and their preferred food source (FOS, fibre) present within the Flortec supplement, is known to enhance intestinal barrier function, thereby reducing levels of endotoxin exposure and inflammation. We believe that this is a likely mechanism behind the improvement in testicular function seen in these men, especially as earlier reports have shown that Lactobacillus probiotic primarily mediates its beneficial effect on testicular function via modulation of the immune system (Poutahidisetal.,2014).

Sperm Microbiota and Its Impact on Semen Parameters

we observed an increased relative abundance ofLactobacillusin samples with normal sperm morphology.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6379293/

I have been thinking about impaired intestinal barrier.

My probiotic has lactobacillus paracasei. So I guess time will tell but I still feel inflammation is too high.

Check out how screwed up my stool is. I just sent another sample off last week to see if my treatment did anything besides make me feel like crap.

Oh and wanted to ask if anyone gets sensitive skin that hurts to touch but there is no rash or visual sign of anything? I have gotten it on my arm sometimes but right now its on both my arms and my waist/groin area.

@SCOTT242Thanks for posting this!

I should be getting back test results similar to this, but more in depth to compare in a few weeks.

So what was your treatment?

interesting that most commensals or normal bacteria seems to be in range, (unless you were taking a probiotic?)

and that yeast/ fungi was in normal range or not detected.

yet it still seems that there is a dysbiotic shift based on results.

I agree with guitarman01, it's very interesting to see normal bacteria in range yet dysbiosis.

Scott242 - my skin hurts to touch in certain areas, but I have folliculitis? do you have any folliculitis?