On 12/9/2018 at 4:16 PM, Patella said:

Is there any way some of you could share what you believe are the primary mechanisms of harm (less important)

There seem to be alot of one and done posts. So I am curious if this is the case or not.

My main interest atm is the microbiome and how it affects the immune system. How a drug like Accutane could possibly alter both long term. There's a couple recent studies I will post on this soon.

I would say I do know alot at this point based on experience, testing and endless research. This doesn't mean though that I can help anyone or even myself atm if I were to be completely honest. There is still plenty to keep moving though.

9 hours ago, guitarman01 said:

There seem to be alot of one and done posts. So I am curious if this is the case or not.

My main interest atm is the microbiome and how it affects the immune system. How a drug like Accutane could possibly alter both long term. There's a couple recent studies I will post on this soon.

I would say I do know alot at this point based on experience, testing and endless research. This doesn't mean though that I can help anyone or even myself atm if I were to be completely honest. There is still plenty to keep moving though.

Beside microbiome I would say there may be some correlation with antibodies which may appear during curation (untypical titre and fluorescensy). This may correlate with cell's splitting in future and that is why the disease is spreading and just do not want to disappear. And it also can correlate with problem with doing sport / activities because lactic acid which is produced naturally in muscles during activities can help with spreading this antibodies and can cause serious muscle defects in future.

So if every test you already did, didn't show any abnormalities then try to do ANA test. There're 3 levels of ANA. ANA1, ANA2 and ANA3. ANA1 doesn't show many details but if this one is in norm there is no need to do ANA2 or ANA3.
In my case only this one test showed that something wrong is happennig. Some doctors may say that ANA abnormalities may be related to SLE but don't believe them. Modern studies show that you need to have many others test done to say that is SLE.

Yesterday and today I met two professors and they were first people who told that my health issues are strictly correlated with taking isotretinoin so I assume it may open some doors during discution with other specialists. Till these days all doctors were saying it's impossible so it may help.

Vitamin A is a vital part of human embryo development as well as youth/adultregulation and homeostasis. To focus on Accutane's affect on a specific subsystemas if it is going to point you in a cleardirection is dubious at best. Treatment is "controlled" retinoid toxicity. Toxicity can affect anyone and everyone differently. One persons vision may be affected, another's joint's, or endocrine system, or digestive system. Isotretinoin has genetic transcription factors (this is the most dangerous part) which is why some side effects remain seemingly permanent. Some side effects may take weeks, months, or years to show up. Think about that one. The drug doesn't even have to be active in your blood.

My most debilitating symptoms are anhedonia, insomnia, day-night reversal, vision/hearing. I suffered a transient ischemic attack at the age of 20 (3 weeks after cessation of the drug). So, my nervous system was a bit affected.I have night blindness post Accutane. I have Visual Snow post accutane. Visual snow is a group of 5-6 symptoms affecting vision/hearing.

My priorityis Neurology at the moment. Especially the nervous system. As well asthe hormones/chemicals of the brain. Otherareas of my body, along with my joints, were impacted only slightly. My organs are managing fine with a proper diet, exercise, and supplementation.

My advice to any practicing physician would be to wait until the person is at the very least 17-18 years of age. Try lower doses primarily. And last of all to make sure they are not taking any other medications while taking Accutane. The patient mustbe told this to avoid complications. The patient must also be told that illicit drugs (marijuana, alcohol, adderall) will also complicate things and further increase toxicity to parts of the brain/body/nervous system.

You want to do blood tests beforehand to make sure they are not deficient in any vitamins/minerals. You also want to monitor vitamins/minerals during treatment and consider supplementation with E or D as they go hand in hand with A.

Absolutely asinine that doctors prescribe Isotretinoin at super high doses without doing any of these steps. The guy that gave it to me was in his 70's, so I can't even blame him, probably already in a retirement home. It doesn't matter what profession you are in, as humans, some are going to be incompetent, most decent, and a few gifted and innovative.

On 12/6/2018 at 1:41 AM, oli girl said:

hatetane - Are you on FB??? if so search for this page and join and I believe the mom has the link etc....Her son committed suicide years ago.Olly's Friendship Foundation

Thanks Oli girl, I know that mum very well - I though there was something that I had missed.

If any parents want to take action please contact me or go through Olly's friendship page where you can catch up with us.

12 hours ago, niedlaizo said:

So if every test you already did, didn't show any abnormalities then try to do ANA test.

I did have a extensive lab workup at a rheumatologist I saw not too long ago.

ANA was normal, not that this is the case for everyone.

There are a few antibodies I can tell you about. There hasn't been enough testing to confirm if this would flag in a significant group with post tane sides or not.

(for that matter post fin and ssri's as well)

The main one if I could snap my fingers and have it tested even in just 10 patients (because its 50/50 as a false negative) would be, and its a mouthful,

acetylcholine ganglionic neuronal antibody

a marker of neurological autoimmunity

2 people that took Accutane that had this antibody tested through Mayo's test catalog tested positive for this.

1 other person was able to test this recently through Quest Diagnostics. It was negative. I'mnot discrediting this, but it also wasn'tthe same test.

Autoimmune Autonomic Ganglionopathy Summary

http://www.dysautonomiainternational.org/page.php?ID=124

Keynote Lecture Autoimmune Autonomic Failure: Treatable, Under-diagnosed Condition

On 12/7/2018 at 11:30 PM, Mabbbs said:

Hi everyone. i feel like what Im about to post might be beneficial or hopefully helping in some way for people here. So after four years of running from doctor to doctor and all my results coming back normal, I did a lab test and it turns out my cortisol levels are high. Im currently in the process of discovering the reason/disease/syndrome behind this. Please check your cortisol level. I went to five specialists and four of them didnt want to test me and when they did they did a standard test that excluded the cortisol. The last doctor brushed off the high results of the cortisol. Im finally seeing a doctor thats working with me; currently it seems like a tumor and cushings disease (still not confirmed). Look up cushings disease.Im emphasizing to get tested because my symptoms did not match the symptoms of high cortisol levels, namely weight gain.You do not necessarily have to gain a lot of weight to get Cushings. Actually, only recently did I notice a bit of weight gain even though god knows for how long Ive had high cortisol level (Im looking at you Accutane...).I know someone on this website that got all his side effectsfrom Accutanecured after fixing his testestorone. Check your hormones. Not just the standard ones. Again check your cortisol.If anyones interested my symptoms are joints cracking, food intolerances, increased heart rate, hair fall, hirsutism, worsened acne, frequent urination, weak muscles, depression, anxiety, low libido, tremors,and sleeping problems. Im currently on a diet that an alternative doctor put me on (really just omitting all my food intolerances and diary. Plus Im avoiding processed and going organic as much as possible). I tried acupuncture and taking Chinese herbs, vit D, ferritin, probiotics/probioticsfor a while and Imcurrentlyworking out. In the past, I did a one month detox, but it triggered my frequent urination.

Very high cortisol, high urine output, very low T, and low Oestrogen(despite signs of dominance) which did rise significantly (Cushings was ruled out),which goes to show that blood tests should be taken and monitored on a regular basis. None of these are fixes but rather knock on effects. It does seem that some have claimed that TRT has helped but for the majority it hasn't. As a minimum I would suggest that all basics, leaky gut, dry gut, fixing whatever bloods show up, diet and exercise etc all have to be worked at first over a couple of years. Get that right and you might be primed for TRT or whatever. I suspect that Guitarman may know more than doctors at this point but we do need to get researcherson board with us because they in theory have an understanding of science that we do not have. Sadly we don't have any professionals looking for a cure for us - we need to change this somehow.

Niedlaizo is also right though in that we need experts - we just need PASacknowledgedfirst so that researchers will step forward. As I said before waiting for The PFS foundation to come up with a cure for us it just stupid- we need our own foundation which we won't get without recognition! We also don't know what the PFSfoundation is looking at and testing - do you think for one minute that they are looking at this froma fundamental view?

@ Truejustice :trying to ban this product & protect others and/or get out there and seek different therapies etc

The whole point is we need to do all 3, ban or get accutane use down to a minimumlike in the states(surprisingly), protect others and keepseeking cures ourselves until such times as we get more help.

It's so simple that I just can't see why you don't all agree.

@Guitarman - you only have to check out all Truejustice's posts to see how he debunks reporting side effects and makes negative comments on many of my posts. Even now he suggests I am lashing out at him and not showing self control which is pathetic- I just don't want to hear from him anymore.

The differencebetween ProfessorHealy and other doctors is that he listens to what his patients are saying. Hedoesn'tneed patients to prove to him that a drug is responsiblefor incurred injuries - he accepts that if many patients are reporting the same side effects then they deserved to be listened toand believed. This should be a starting point for all doctors!

On 12/9/2018 at 10:16 PM, Patella said:

Hi all! I'm very sorry you have had to go through this.
I am a physician and someone I am working with has gone through a very similar experience to many of you.
I have a strong interest in developing some type of a protocol which can potentially help accutane victims since there is a need for this therapy and very few people who I have been able to find in the integrative medicine circles with much familiarity of it.
I started reading through the posts here as my interest in this topic is sincere and there appear to be many useful insights here which match what I have seen myself, but realistically, I can't go through all of it on my own.
Is there any way some of you could share what you believe are the primary mechanisms of harm (less important)
and every single approach people have tried thus far alongside if it had any degree of success?

I am really open to anything and I would appreciate your help in trying to figure this out, both for my current patient and people I expect to work with in the future.

Thank you

https://www.dailymail.co.uk/health/article-6431453/Thousands-prescribed-Roaccutane-theres-disturbing-evidence-leave-men-suicidal.html#reader-comments

Hi everyone, I took Accutane in 2013. For the past few years I've been experiencing thinned skin and worsening eczema symptoms, constant flakiness in my scalp, brain fog, weight loss etc. I have read a lot of the posts in this thread over the past few years, and I believe that many of us are looking too far away from the source of all this. As I read through more and more studies and tried to relate the different parts of our body (hormone levels, microbiome etc.), I saw that all of these systems work like a series of circles. Issues in system A can mess with system B, and issues in system B can also cause issues in system A. But there is one constant: Inflammation.

Joint pain, food allergies, brain fog, depression, eczema, erectile dysfunction, messed up microbiome, all of these can be caused by inflammation, don't look into these issues separately. I am confident in this not only because chronic inflammation ties all of our symptoms together, but also because my symptoms disappear whenever I've gotten anti-inflammatory or mast cell-modulating medicine/treatment: (this includes nicotinamide riboside, stem cell injections as well as common anti inflammatory drugs). I have not experienced erectile dysfunction, but whenever I'm on nicotinamide riboside, orafter getting my stem cell injection this time, my libido has shot up exponentially and I've gotten so many random boners that I didn't before.

I don't have time to respond to or talk about all the other theories mentioned in this thread before, but after being out of work for 3 years from health issues and constantly reading through studies and these threads, here are my two theories:

1) Our issues (constant inflammation) are caused by Mitochondrial Dysfunction.

Vitamin A and Retinoids as Mitochondrial Toxicants

Mitochondrial Dysfunction is usually caused by damage to the Mitochondrial DNA (mtDNA), causing mutations. When this happens, these damaged mitochondria can constantly emit oxidative particles, which could be our source of constant inflammation in the body. In a normal person, mtDNA mutations accumulate over time, which possibly explains why people develop more health issues as they get older.Inflammation basically causes the various systems of the body to function worse and worse, eventually causing symptoms. It could also explain why many of our symptoms share many similarities with symptoms experienced by older people.

Like the study above says, Accutane can be a mitochondrial toxicant, causing damage to our mitochondria and possibly causing dysfunction. This could also explain why people have low vitamin levels after taking isotrenioin (since certain vitamins are used up in mopping free radicals/oxidative particles released by our damaged mitochondria).

2)Our issues (constant inflammation) are caused by ourweakened skin structure (inability to deal with Staph Aureus)

Not sure how familiar you guys are with Staph Aureus, but basically its a bacteria that lives in at least 60% of the population. When youre healthy, it doesnt do anything, but whenever you are compromised (skin barrier compromised, have a cold, or whatever health issue you can think of), staph aureus will take the chance to grow and you will get additional symptoms as a result of your immune system reacting to fight it off (in the form of inflammation). Thats a much simplified explanation of how it works, but for example, in people with eczema, your itch mostly comes from the bodys immune response (inflammation) to Staph Aureus; it is causing trouble because the skin barrier is compromised. You can wipe it with an alcohol wipe and it will kill the staph (temporarily), getting rid of the itch, but the breach in the skin barrier will remain.

Anyway, I did not include any specific studies but do a quick google search, there are papers even from the 80s that talk about Staph infections being associated with Isotrenioin use. There are also papers that specifically talk about accutane permanently making the skin more susceptible to staph.In that case, staph is constantly messing with our skin, and our bodies are constantly inflamed as a response to staph.

The trouble is thatin people who are susceptible to staph, it will come back easily even if you almost completely get rid of it in your body. Its called decolonization, but like I said, since were susceptible to it, it will come back. And if youve used antibiotics to get rid of it, you will probably experience it even worse since youve also killed off the beneficial bacteria in your skin/body that helped keep staph in check.

How to deal with it:

For mitochondrial dysfunction, there is a supplement called NT Factor that is supposed to temporarily heal the mitochondrial wall and help it recover its function. Apart from that, I dont know if theres anything too effective. Im talking about recovering function, so that might be why popular mito drugs like coq10, pqq etc. might not be that effective. But I dont know really, feel free to look into that. Vitamin IVs might be a good start as well, its hard to get large doses otherwise.

For skin and possibly mitochondrial dysfunciton as well, I think stem cells is our best bet. Look into messenchymal stem cells (but please, if you ever attempt it, dont get fat-derived stem cells, theres data showing that it can cause new histamine issues).Search for a Facebook group named "stem cells focus group: healing from lyme and chronic illness to find data and information on which clinics have yielded good results.

Messenchymal stem cells is our best bet because it functions on many levels and is intelligent:It modulates the various parts of the immune system, it zones in on damaged cells, it releases a variety of growth factors depending on what it reacts with. Once again, please Google search this, there are many studies that talk about its ability to heal the skin, encourage collagen growth etc. Like I said in the beginning, the body works like a series of intercepting circles, its an almost futile attempt for us to solve this puzzle by using drugs that go through one or two specific chemical pathways. I believe it makes more sense to use our bodys existing tool of repair, but boosting it exponentially by introducing many young, healthy stem cells. Do note that studies have shown that directly injecting messenchymal stem cells into the skin show significantly better skin healing results compared to a stem cell IV.

Also note that in the various cases Ive read, stem cell therapy is far superior to medication in that many people remain in remission for a year or even more, without needing regular treatments. This includes cases of Ulcerative Colitis (which is also an inflammatory condition). Not saying that this will also apply to us, but it just shows that stem cells are fundamentally different from medication, no other medication for inflammatory conditions have shown this sort of result.

There is the worry that Accutane causes at least 100 changes to our epigenetics. In that case, I dont know if stem cell-stimulated growth will work properly in us. But so far I think its our best chance. I have received 2 IV injections of 6 million messenchymal stem cells. It has modulated my immune response so far, my skin has calmed down a whole lot, Ive been getting so many random boners every day as opposed to almost none before that (for those of you who have erectile dysfunction), my anxiety has calmed down, my weight has gone up now that I can actually retain water in my body(lost a bunch after accutane). Its been almost a month now, but Ill be looking for skin injections next.

P.S. I did around 40 DIY fecal transplants a few years ago. I did gut microbiome lab tests before and after, and it did get rid of my dysbiotic bacteria, and I recently discovered that my egg and wheat allergies disappeared (according to lab tests). But it did not help me much symptom-wise.

I know this post was sort of rushed, I didnt have much time to write it and I kept deleting parts of it whenever I hit ctrl Z, sorry! I also wont be looking back at this post often so for simple questions, just do a google search, my knowledge of these things came from reading a lot of studies and bits of it from experience. I wrote this in hopes that some of you would also investigate in these areas. Good luck!

7 hours ago, realninja said:

Our issues (constant inflammation) are caused by ourweakened skin structure

This is actually something ive been looking at recently. Thinning of mucosal layers. this acts a defense. Even possibly looking at gum tissue permeability causing gingivitis and inflammation.

Same with intestinal permeability and how they are linking it with autoimmune disorders.

I agree with the inflammation part. For example, hearing problems, chronic feeling of ear fullness, this seems most likely due to chronic inflammation. This could even be reactionary, it dosent have to originate in the sinuses.

3 hours ago, guitarman01 said:

I agree with the inflammation part. For example, hearing problems, chronic feeling of ear fullness, this seems most likely due to chronic inflammation. This could even be reactionary, it dosent have to originate in the sinuses.

Yes I only used the sinus issue as an example to talk about Staph itself since most people who are colonized by Staph have their nostrils colonized. Like I said though, I already went down the route of trying to fix the microbiome; I did 30-some fecal transplants and it altered by gut microbiome well (shown in my lab tests) but it didn't do anything for my symptoms. I think those of us who have dysbiosis either had it before accutane (possibly explains why we had acne and wanted to take accutane in the first place), or got it as a side effect of the immense inflammation caused by taking accutane.

Hi Realninja

thx for your post, great insight and plenty of stuff for us all to look into - much appreciated

Did you have any sleep issues after Tane?If so has it improved? Also you mentioned brain fog but what about depression?

Have you improved in this area since youve found a protocol to work with?

Alright, let's do this thread some justice and help people. To catch everyone up to the discussion, here is a video highlighting what RealNinja and Guitarman have been discussing recently:

So, if you suspect this may be an issue you'd like to tackle, what can you do? Well, first and foremost, diet change. Plant based + fruit based. Next, pro-biotic supplementation. I personally grow alactobacilluskefir culture and drink a fermented milk smoothie twice a week. It's very cost effective and not that difficult. You don't even have you use milk. You can use Lactaid, Coconut milk, Almond milk, Soy, etc. The bacteria eat the sugars inside.I've been doing it for almost two years and I started out with just two table spoons which I purchased from a lady on eBay. The cultures have grown to almost two cups. There are plenty of directions and recipes on YouTube. Some good digestive supplements I personally use would be the Jarrow 299v formula and the VeganZyme or OmegaZyme digestive complex. As a last resort, and final bullet, you may want to consider a fecal transplant or coffee enema's. I'm not gonna get in to those, because I haven't tried them, but they are a few rounds I have left in the chamber should I need to utilize them.

Fortunately, all this gut talk ties in with my Neurology and Nervous System focus and you don't have to go very far backto see the progress I am making utilizing long distance running, hyperbaric oxygen therapy, andmushrooms to affect BDNF and neurogenesis. Next on the list would be Stem Cell therapy for sure. As, Real Ninja pointed out.

Last of all, I wanted to reach out to the sexual dysfunction victims of both Isotretinoin and Finasteride. Have you considered a trial run of Dbol (metandianone)? An oral anabolic steroid that was designed by the US government to compete with Russia in the Olympics. Apparently, it has a relationship with 5a-reductase?? Just a thought.

What are the drugs though to stop the inflammation??

can anyone name them?

supplement wise I know Curcumin is good for anti inflammatory but we need something heavier than that obviously

Research identifying which specific microbes or species affect which neurotransmitters is pretty interesting @macleodat the 6:30 mark.

They are finding just a small percentage of certain types of bacteria that make up the microbiome could play a major role in health.

The microbiome: A key regulator of stress and neuroinflammation

The microbiota-gut-brain axis is a dynamic matrix of tissues and organs including the brain, glands, gut, immune cells and gastrointestinal microbiota that communicate in a complex multi directionalmanner to maintain homeostasis. Changes in this environment can lead to a broad spectrum of physiological and behavioural effects including hypothalamic-pituitary-adrenal (HPA) axis activation, and altered activity ofneurotransmitter [Edited link out]systems and immune function

They also talk about increased blood brain barrier permeability affected by the microbiome.

I believe its all very complicated, much more so then taking a probiotic cocktail and calling it a day.

They mention a fecal transplant causing a women to become obese in the video. So its not this simple either.

Healthy gut microbiome shown to be important for recovery after heart attack

Oct. 8, 2018

https://www.news-medical.net/news/20181010/Healthy-gut-microbiome-shown-to-be-important-for-recovery-after-heart-attack.aspx

https://theconversation.com/the-key-to-our-humanity-isnt-genetic-its-microbial-108320

This is what im looking at right now, especially being the fact it might play a integral role in vitamin A metabolism.Meaning if you provide a surplus or overwhelm with high dose retinoids, Bifido might become depleted. In the CFS study they used 10 billion cfu's per day. This dosage only recently became available in the states.

The human gut microbiota contains a diverse bacterial species understood to exert numerous physiological functions such as protection against pathogens, barrier effects, regulation of energy levels and metabolism, modulation of intestinal motility, and regulation of immunity within the entire gastrointestinal (GI) tract [1]. Probiotic bacteria are defined as live microorganisms that confer a health benefit on the host when administered in adequate amounts [2]. Some specific probiotics/probiotic strains have been shown to beneficially impact the intestinal mucosal barrier and improve GI integrity, and thus, in turn, strengthening GI immune response, reducing mucosal inflammation, and decreasing oxidative stress [38]. Sports 2018, 6, 116; doi:10.3390/sports6040116 www.mdpi.com/journal/sports Sports 2018, 6, 116 2 of 14 Recent findings have shown a specific probiotic strain termed Bifidobacterium longum 35624 (B. longum 35624), a specific strain of Bifidobacterium, to beneficially impact the immune response by inducing regulatory T cells (Treg), which are designated to better contain reactions and limit the aggressive spread of immune responses to other tissues, in human models within the gut as well as beyond the gut [911]. It has been previously reported that sixeight weeks of B. longum 35624 supplementation increases secretion of Treg cells in the peripheral blood of healthy human subjects as well as reduce systemic circulation of pro-inflammatory biomarkers TNF- and IL-6 in clinical patients diagnosed with chronic fatigue syndrome (CFS) an immune-inflammatory disease [9,12].

Hey Guitarman, I really don't think the gut microbiome is the answer to our problems. Like I said, I received 30 fecal transplants from a healthy person (all lab tested), and it improved my gut microbiome makeup significantly (also according to lab test). My symptoms did not change. I've been through the probiotic rabbit hole, here are the key issues with supplements:

1. Probiotic supplements only contain very few strains, compared to what a healthy person has
2. Probiotic supplements do not have the ability to colonize, even if they do it's for a very short while

That's why I did fecal transplants. It's the ultimate probiotic, not only having much larger doses of probiotics, the same variety of strains as a healthy person's microbiome, and can actually colonize.

In terms of thinned skin. Accutane slows down collagen production and probably killed off some fibroblasts, it's not some mystery how it causes thinned skin. That's why I'm looking at stem cell therapy to hopefully directly get the fibroblasts producing collagen quickly, or even create new fibroblasts.

6 hours ago, TrueJustice said:

What are the drugs though to stop the inflammation??

can anyone name them?

supplement wise I know Curcumin is good for anti inflammatory but we need something heavier than that obviously

The point isn't to suppress inflammation. It doesn't work out well in the end. Using drugs, it will cause withdrawal effects and worsen your condition over time. The point is to figure out where the inflammation is coming from and try to fix them. That's why I posted my two theories, both of them are sources of inflammation.

I know, I was just curious- Ive had tension in the head coupled with light sensitivity for 20 years, would seriously entertain taking a drug even to get a weeks refief....

Taking drugs though is never really the answer plus they have their own side effects as we know.

Thanks for the tip on mitochondria- Ive been on what I believe to be good quality supplements for mitochondriamany a time but never felt any relief - Ill look into NT Factor though as an option.

The Stem Cell path you discuss I think is where we all need to head. Although discussing fecal transplants, my Gastroenterologist in the end didnt believe I have a stomach issue so didnt do any - nothing sinister found so that ended that, thefact that youve done30-40 and still have Taneissues to deal with suggests its not as critical as I first thought.....

Thanks again for the info on stem cells.

Hi, another one here,
Short story been on accutane 4 months ( 3 -40 mg/d and one 60 mg/ d ) , deveoped major depression with suicidal thoughts. Been on mirtazapine ( antidepressant ) for half year- i think it was even worse. Now, 6 years later there are some common issues i' m still sufering - joints pain and problems after moderate activity. Back pain just after standing few hours. Fatigue- damm that is awful , slept at night for 8/9 hours and waking up with no energy at all. And that sh*t brain fog , what the hell is it ? Looks like horror story. Decided life could not look like this anymore. Will start with some brain boosting suplements. Updates if anything will work.
PS just after reading few pages in this topic tested testosteron - it was like 11 ( norm 8-27) before accutane had like 24... now i know why my libido is like 2/10 .
PS 2 i saw someone talking about constant feeling of the pressure in the head - any lead? i experience it too, probably going for mri next week and mayby CT scan to look all the sinus

@RafCej , there is possibility the feeling of head pressure is intracranial hypertension, a.k.a pseudotumor cerebri. There have been a few people mention being diagnosed with this condition and it is a known side-effect of retinoid therapy.

7 hours ago, RafCej said:

PS 2 i saw someone talking about constant feeling of the pressure in the head - any lead? i experience it too, probably going for mri next week and mayby CT scan to look all the sinus

Not sure if helpful but I feel the same pressure. Whenever I take Niagen (nicotinamide riboside), I feel it lifted within minutes. It happens consistently. But I stopped taking it. Might want to look into NAD IV. Niagen runs through a SIRT pathway I think, giving anti inflammatory feeling very very quickly. I don't know if it's the reason why but the effect is obvious and consistent.

20 hours ago, TrueJustice said:

Thanks for the tip on mitochondria- Ive been on what I believe to be good quality supplements for mitochondriamany a time but never felt any relief - Ill look into NT Factor though as an option.

Yes give it a shot. It (supposedly) works completely differently from most mitochondria supplements. It's a bunch of lipids that are supposed to repair damaged mitochondrial walls, whereas other mito supplements seem to be focused on inducing more mitochondrial growth.

10 hours ago, Dubya_B said:

@RafCej , there is possibility the feeling of head pressure is intracranial hypertension, a.k.a pseudotumor cerebri. There have been a few people mention being diagnosed with this condition and it is a known side-effect of retinoid therapy.

If i remember corretmctly the leaflet only says about pseudotumor cerebri when the accutane goes the same time with tetracyclines antibiotics. About year before accutane I had one months treatment with tetracyclines and remember similar headache, but more intensive. Everything stoped after stopping the meds.

Any way to treat this condition?

On 12/13/2018 at 9:29 PM, realninja said:

Hey Guitarman, I really don't think the gut microbiome is the answer to our problems. Like I said, I received 30 fecal transplants from a healthy person (all lab tested), and it improved my gut microbiome makeup significantly (also according to lab test). My symptoms did not change. I've been through the probiotic rabbit hole, here are the key issues with supplements:

1. Probiotic supplements only contain very few strains, compared to what a healthy person has
2. Probiotic supplements do not have the ability to colonize, even if they do it's for a very short while

That's why I did fecal transplants. It's the ultimate probiotic, not only having much larger doses of probiotics, the same variety of strains as a healthy person's microbiome, and can actually colonize.

I'd actually be looking at a more targeted approach as opposed to a fecal transplant.Alot of current research is looking at very specific strains.

What truly is a probiotic? Different strains and species have shown to be competitive at times and not all benefit the host. So just throwing the kitchen sink at the problem (fecal transplant) and hoping for the best, to me doesn't seem the best way to look at this.

I also believe most probiotics become transient and not allowed to permanently colonize because of the microbiome that is already established. They kick out the new visitor so to speak.

They are finding there is a critical window right after birth where true colonization takes place. This first bacteria that is established might be the most important one, that paves the way for health and disease all the way into adulthood.

9 hours ago, RafCej said:

If i remember corretmctly the leaflet only says about pseudotumor cerebri when the accutane goes the same time with tetracyclines antibiotics. About year before accutane I had one months treatment with tetracyclines and remember similar headache, but more intensive. Everything stoped after stopping the meds.

Any way to treat this condition?

The bad news is this seems very hard to diagnose. The most accurate way is a spinal tap.

The good news is you actually had a guy on here not too long ago have a spinal tap.

The reasonbeing was intense feeling of head pressure.

They didnt find anything. Alot of people have had this head pressure, so hopefully its not related to intracranial hypertension because that is a very serious thing. It can cause brain damage and vision loss.

So here's a real simple possibility. Ive posted this before. Acne itself could be a type of immune response or defense mechanism. So maybe you quell the immune response or suppress the over reaction. Id be looking at inflammatory and immune markers, metabolic, (hdl,ldl,cholesterol, glucose)even looking down allergic type pathways, you can see this going in many different possible directions.

Isotretinoin as a Possible Environmental Trigger to Autoimmunity in Genetically Susceptible Patients

https://www.hindawi.com/journals/cripe/2017/4207656/

Association Between Oral Isotretinoin Therapy and Unmasked Latent Immuno-Mediated Diabetes

http://care.diabetesjournals.org/content/32/8/e99

Just checking in to give an update. Happy to see all the discussions about microbiome and autoimmunity as thats what I have been focusing on. I am seeing a new doctor that is actually helping me. His website is Just In Health. We did stool, adrenal, and nutrient testing. I have C. diff overgrowth as well has a bunch of "bad" opportunistic bacteria. Also some typeof worm. I had overall low cortisol and low sex hormones. We are treating the adrenals first, then the gut, and I can't remember the third step. Two things have happened so far with the new treatment. For years my stools have been loose, gassy, explosive, and smelt terrible. They are now much firmer with no/little gas and smell much much better. So that alone is freaking amazing. I attribute that to taking the proper amount of HCL and enzymes with my meals. Secondly my erections are back to normal. Since accutane I dont think I ever lost my sex drive, but I just hadsoft erections. Never felt like it was full size or hard enough like pre tane. Now they are solid and I couldn't be happier. Actually get morning erections now as well. I attribute that to someof the many adrenal supplements my doctor has me on. Licorice root, pregnenolone, dhea, various adrenal support herbs, L-tyrosine, adrenal glandular... This is the most progress I have had so looking forward to keeping it going. My previous big leap in progress was realizing all of my food sensitivities and eating more of an autoimmune paleo diet. If I eat beans, grains, dairy, eggs, I get really bad joint pain, fatigue, depression/mood swings, itchy/painful eyes. Ok well just wanted to touch base. Ihope people are getting some relief. I check back here hoping to see something that explains what the cause of all this is (and solution) but for now I just keep on keepin' on!

What youre currently addressing sounds very similar to me - for me its HPA Axis so yes definitely treating adrenals as part of this.

More recently as we work on gut ( currently treating persistent parasites) My kinesiologist also said he thinks we need to treat ileocecal valve. Never heard of this as asyndrome before but could explain plenty of our issues - look it up.

Getting gut back to normal is bloody hard - so many foods you need to avoid to fully repair it, going to have to show some real discipline over next 3-6 months to give it my best shot.