Quote from DJ71021 on July 20, 2023, 2:00 am

Hey guys. My name is Dorien. I've spent an extensive amount of time on this forum over the last week or so and I wanted to come on here and share my experience with Accutane and low-vit A journey. This will probably be all over the place but I will try my best to stay organized. I guess it's best to start at the beginning of my health problems.

I am currently 23. I started having digestive issues when I was 14 so almost ten years now. At the beginning, it just started as acid reflux and hiatal hernia symptoms. I had very bad eating habits. Not in terms of the food choices (I have always eaten "healthy" when compared to other people my age). More so that I would over-eat and always ate to feel full. I would eat huge meals while laying down in bed and then go to bed right after. This was the initial domino that set up everything else. By the time I got to high school (2016), my reflux became very severe. I was constantly taking tums and it was happening regardless of what I ate.

Eventually, I went to see a GI who performed an endoscopy. They found a small hiatal hernia, antral atrophy and fibrosis of stomach lining, and h pylori. I was put on PPT's and antibiotics for the h pylori and sent on my way. The GI never even seemed concerned about the condition of my stomach lining so there was really never any discourse about it. Just treatment with medication. Fast forward a few years, the issues persisted. I had successfully eradicated the h pylori but all the other issues remained. Since this point, my stomach lining has continued to be inflamed as I deal with chronic gastropathy. It never fully healed.

Side Note: Dating all the way back to 2014, I had used Tretinoin (also known as Retin-A) on and off for typical teenage acne. since it was so long ago, I cannot remember the dosage at all. I just remember using it for a few days or weeks at a time every night up until about 2018. It was a topical cream i applied to my face.

At the beginning of 2018, I began using cannabis and occasionally mushrooms as most highschool students eventually do. It was enjoyable at first. It helped me a lot with my appetite as the reflux issues had really made it hard to eat. Unfortunately, the underlying issues still persisted. Towards the end of 2019, I began experiencing weird symptoms when I would smoke cannabis. It felt like it was taking a huge toll on my body. I would wake up feeling sick and fatigued. Eventually I started having these very severe reactions to cannabis and mushrooms. I had to go to the hospital several times. My BP would drop, my heart rate would skyrocket, my circulation was not working properly, my face would turn blue, and I would basically be stuck in this never ending purgatory of feeling as close to fainting as humanely possibly without actually fainting. I would feel extremely weak as if my body was just shutting down. My hands would get cold and sweaty and my temperature would wildly fluctuate. And NO this was not anxiety or a panic attack for the love of god. There were too many consistencies with the timing of the symptoms and the fact that it would happen even when I was sleeping. This would last for several hours and it would take me days to recover. Every time I went to the ER, everything would come back normal. The reason why Im including this in my story is that i later came to realize that these were the early signs that my liver and possibly kidneys were just not working optimally. It was too much of a burden for my body and I was completely oblivious and confused by the signs.

At the beginning of 2020, my acne was still pretty bad so I went to a derm. and got an Accutane prescription. BIG MISTAKE. I began taking the accutane and started having side effects pretty quickly. This is when my "metabolic" symptoms began. These still plague me to this day. It is very difficult to accurately describe the severity of these symptoms but I will try my best. I would have these episodes that would last about 1-3hrs each time followed by a whole day of just feeling exhausted. I would begin to feel very very sleepy but in a very bad and uncomfortable way. Like I was being forced into a coma. It felt like I had just been given an IV with a lethal dose of a poisonous gas. It was almost like I was extremely drunk but in a very bad and dangerous way. Very hard to describe. It would effect my breathing rate which would slow down A LOT. When I am very symptomatic, I've counted many times where I've taken 5 breaths in a minute. I would have these long apneas in between breaths like that of someone who has sleep apnea except I'm not asleep. It was impossible to function whatsoever. Like I said, literally felt like I was being poisoned into a coma. More often than not, my body had no choice but to give in and I would go into these sleep-like states where I would be jolted back into consciousness because my breathing would stop and I wasn't getting enough oxygen. Really frightening stuff. In addition to the metabolic symptoms, I started having other typical Accutane side effects like suicidal thoughts, closed eye-light flashes, my vision would go green at night in a dark room, my skin was extremely dry and chapped, my genitals became very sore and achy, my upper back muscles started locking up every time I would walk or do anything physical. In addition to all that, my digestive symptoms became unbearable. It was to the point that I was considering an anti reflux procedure. I was getting the worst heartburn, indigestion, and reflux of my life. I was taking PPI's and turns like they were candy and nothing was working. The accutane was absolutely destroying me. It felt like nothing was moving properly through my digestion and it would just rot in my intestines. My stomach lining was becoming more and more damaged every day and I was completely oblivious. I didn’t really even understand what gastritis was until a year or two ago because my doctor never really talked to me about it. I began to think that the burning of my stomach lining was just normal. Stupidly, I kept pushing through it thinking it would get better. I ended up taking the accutane for about 4 out of the 6 months i was supposed to. I finally stopped because I realized all my symptoms were from the accutane.

Around Oct. 2020, I stopped taking it and realized my health had completely went to shit. Based on how I felt, I could only assume the worst. I thought for sure I was dying of cancer. My symptoms were literally happening 100% of the day. There was no relief. I had dug myself much deeper into a hole that I was already very deep in prior to accutane. I then spent the next 3 months trying to figure out what the f*** was going on with my health. I spent months trying to convince my doctor that something was wrong and that it wasn't in my head. Despite her incompetency, she did refer me out to a lot of specialists to rule most things out. I saw a cardiologist, pulmonologist, allergist, hematologist, neurologist, an ENT, etc... everything came back normal. Even my liver panels were fine. Im sure this sounds very familiar to some of you. In the process of me trying to figure out what was going on, I decided to stop my PPIs. I had to make sure I was ruling everything out. Alarmingly, when I stopped my PPIs, I was no longer getting heartburn yet I still had all the same digestive issues. Constantly refluxing food contents, indigestion, bloating, etc... At the time, I was quite happy I didn't have to deal with the acid component of it anymore. I soon came to realize that I had damaged my stomach lining/neglected to take care of it properly so much that the original area that was inflamed completely stopped functioning properly. I no longer produced anywhere near the stomach acid that I need to have a working digestion. Fun!

In June of 2021, I found Garrett Smiths network, After ruling out so many of the mainstream things I was very confident that this was it. It was the vitamin A from the Accutane. I began the course and diet. In the first few days of just the diet, I felt like I was dying. It was the first time I had experienced a detox dump. I woke up several days in a row on the verge of throwing up straight bile. had to sit by the toilet every morning for hours. I got no sleep. My head was pounding with the worst headache Ive ever experienced and my entire body had completely broken out into a rash. My liver was definitely overwhelmed and it was a sign I was on the right path. This lasted for about a week and then I was back to my normal state with maybe a very small improvement. I was on a strict diet of black beans, brown rice, chicken/beef/turkey, quinoa, some zucchini, and bananas. I was taking the essentials: lactoferrin, molybdenum, selenium, zinc, topical magnesium, and activated charcoal. I did this religiously for about a year. I would experiment with random things here and there to see if there was some deficiency that was responsible for my metabolic symptoms. I tried upping my potassium with various forms and a shit ton of bananas, I tried taking elliot overtons thiamax b1 supplement, i tried GS* overly simplified putrefactive/fermentative probiotics. Nothing was improving my symptoms.

At that time, I think I remember GS had a certain VIT a blood serum level he claimed most peonle world feel better by. By the end of those 12 months, I was either very close or lower than the number he was looking for. At the start, my level was 37ug/di. At 6months, it went up to 39ug/dl. And at 12 months, it dropped to 29ug/dl

At this point, I was very frustrated because nothing had really changed. I thought for sure I would have been better after a whole year. I began to look at other things. I knew I had a very bad oxalate issue and a b6 deficiency so I went low oxalate and supped with b6 for a few months, saw no difference. I then began looking at some type of acid/base disorders. Based on my lowered breathing rate, I though I had some type of metabolic alkalosis with respiratory compensation. I ruled that out by looking all my emergency room labs that showed no abnormalities in my bicarb or CO2 levels. Granted, my pH was never really tested WHILE was in the middle of my metabolic symptoms. It was around this time that I realized that my metabolic symptoms would only happen in a post prandial state. When I woke up in the morning, I felt great. But as soon as I ate food, those symptoms would begin. And it would always begin about the same amount of time after I would eat. Anywhere from 1 hr to 2 hrs. then it would taper off and return alter eating dinner. I started to look at things like SIBO? I was positive for methane dominant SIBO. I had read a lot about d-lactic acidosis from people who had sibo and I thought it was very likely. So i treated myself for sibo several times and never saw improvements. Did several herbal routes and took rifaxmin at one point as well, I saw some digestive improvements in terms of my reflux but nothing major. Ruling out SIBO, I then looked to Candida. I did the same thing for the candida. I was very strict with my diet and I took a shit ton of antifungals herbs and biofilm enzymes. I was SO confident it was candida for the following reason: as i experimented with different foods to see what was setting off my symptoms, I saw a slight improvement when I would avoid any type of carbs. I thought for sure there was some type of toxic byproduct getting into my blood as a result of the candida feeding off any type of carbs. I bought a breathalyzer to rule out auto brewery syndrome, still no improvements after treatment. I then tried a very very in depth microbiome rebuilding program with a ton of very specific probiotics and prebiotics. That was miserable. No real change in my metabolic symptoms but my digestion was HORRIBLE. I looked like i was 9 months pregnant and my gastritis flared so bad. Constant burning in my stomach on top of the already daily burning I was dealing with. 

Recently, I started to look at mold. It had rained heavily in my city one weekend in February and an old leak (that was supposedly fixed) came back. There was water flooding my kitchen. At one point, I found actual mushrooms growing out of the wood planks of my kitchen wall where the leak was. I had mycotoxin testing done to see how big of an issue it was with me and it was very elevated. The only thing I could really do at that point was move. My mother and I began looking to move and we are still in the process of looking months later. I have relaxed on the mold stuff seeing as though there isn't much I can do until I move. I know it is playing a role but I wont know how big of a role until I get out of here.

 

During this experimenting period, I was running so many different lab tests. I had a bunch of organic acids tests that showed nothing except oxalate issues, b6 like i mentioned, and various fungal/sibo stuff which I already addressed. I had genetic testing done, stool tests, heavy metals, leaky gut, pancreas, etc... Nothing really stood out or could explain my symptoms at all. The one test however that did show something interesting was my liver fibroscan. My dipshit Gl doc (at the time) had a research clinic attached to his practice where they offered these scans for free as a means to find candidates for his hematology trials. My scan showed I had stage two fibrosis. Keep in mind that this was after a year of the low vit a diet. I now knew that there was some damage done to my liver at the least.

Fast forward to current. After ruling so many things out, I have now come back to the Vit A I truly believe that I didn't give it enough time and I was a little blinded by the serum results. I base this on several things. For one, since 2020 when i was at my worst, I have definitely improved. My symptoms are less severe and they do not last as long when they do happen. In the past, it seemed that it would happen anytime I ate. Now, it seems to happen primarily when i have my first meal of the day. I have also come to see the flaws in my original thinking regarding certain foods causing it (ie. candida stuff). What I failed to realize at the time was that those carb heavy meals were usually accompanied by a large amount of fat (nut butter, sometimes cheese, etc...). I think the metabolic symptoms are just part of the detox process for me. I have no idea what the specific mechanism is and why i seems to happen more with breakfast regardless of the food. Possibly large amounts of fat really stimulate my liver to move things along and hence why I feel symptomatic. I also think that in the past when I would find a meal that would not give me symptoms, it was probably just stalling the process and that's why I felt good. Similar to low doses of vit a reducing detox symptoms. In addition to that, I know certain things non food related can give me the metabolic symptoms such as a very hot shower. I can only think this from the shower moving things around and getting more stuff into my blood. Also, if i have a shitty night of sleep, I can almost always guarantee a strong episode the next day. Regarding my gastropathy and stomach inflammation, I have pretty much figured out that there is some amount of bile that gets back up into my stomach and continues to damage that area. Due to the extensive nature of the damage that has been done, Im not sure it will every heal properly. A hida scan showed my gallbladder was functioning perfectly fine so i know it is more related to motility issues and possibly the makeup of the actual bile rather than the gallbladder putting too much out. Im very confident that the accutane completely destroyed a lot of the nerves in my small intestine and ruined my motility, this is the main cause of the bile being able to reflux back up into my stomach. it doesnt happen in amounts that typical bile reflux patients would have (ie. i dont vomit or have yellow spit) but it happens enough to damage my stomach lining. I also know that vit a reduces our stem cells ability to function properly which may be a reason why my stomach and small intestine cannot heal properly. 

Regarding the whole picture, I still don't know for certain if it is vit a. its possible that it is something else related to my liver but this is the most likely thing. I will be continuing the low vit a approach.

I still have a few things I am trying to wrap my head around such as:

1. Why do my metabolic symptoms seem to favor my first meal of the day? Maybe just bile that has been accumulating overnight and is strongest in the morning? if that is the case, why would i feel the symptoms so quickly after eating? wouldn’t I  only feel them once the bile has been reasonable lower down in the small intestine? maybe it is possible that the first meal of the day triggers whatever bile is in my intestine at the time to be reabsorbed back into circulation. i just dont understand how it gets into my circulation so quickly.

2. I also dont think i have met anyone in any of the accutane/vit a communities ive been in that have the specific metabolic symptoms that i do. This is also confusing to me. Does anyone else experience any kind of autonomic suppressing symptoms like i have.

3. I think there is a possibility that my vit a levels may not be high enough to cause issues but more so that my liver has an impaired ability to deal with it due to the damage from the initial damage from accutane. this might be a stretch.

4. It is very confusing trying to figure out if my symptoms are more indicative of something missing or the detox process doing what it is supposed to be doing. I tend to lean towards the latter seeing as though time has been the only thing that helped me improve so far.

Sorry for such a long post. This is information i've been trying to organize in my head for almost four years now. A lot of it still confuses me. I tried my best to keep it in a structure that is easy to follow along with. Im sure i forgot a bunch of stuff as of right now. Would love to hear anyone’s thoughts