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Here is mytwice a year update....
To recap - took accutane for two months in 2008 ish. Had terrible anxiety then depression.. then the food sensitivities. Lots of joint pain, fatigue, depression over the past 10 years. I have done lots of blood work and stool tests. I am autoimmune - positive ANA, SSA, thyroid, sometimes rheumatoid. My typical cycle is feel like crap for months, then have a couple days to a week or if I am lucky two weeks of feeling good that refills my hope jar. My microbiome is all screwed up also.
What is working for me now is #1 not eating foods I am sensitive to. For me that means nobeans, grains, dairy and eggs. And nightshades (although I do have some hot sauce) Potatoes seem to be the biggest night shade issue for me. #2 is eat for my microbiome. I am also sensitive to high FODMAP foods (read I get the chits and lots of gas). So I try to eat low FODMAP and high fiber. Diversity is key. Probiotics are largely transient. If you want to improve your microbiome you have to improve your diet, not take a pill.I made a Vinn diagram of low FODMAP foods and AIP (autoimmune protocol) foods. I eat what's in both lists. It takes a lot of willpower to stick to a strict diet but it pays off for me. I have been able to work out consistently for over two weeks now, which has not been possible for over a year due to fatigue and lack of recovery.
I have also been prioritizing sleep. Aim for 8 hours, wake up early, get in bed early and read before falling asleep (wearing orange glasses that block blue light). I make it a point to get outside and in the sun without sunglasses in the mornings so my body knowsits time to wake up and be alive. Wind down before bed. No screens in bed. I don't even allow myself to have my phone in my bed. Not a good habit for anyone.
I see a lot of people on here focusing on this little thing or that little supplement. In my opinion you need to take a step back and say where am I right now at this point in time. Its important to know what happened in the past that got you to this point but you also can't dwell on it. Get some blood work, get a stool sample, test your hormones and always move forward. Don't go to some witch Dr but a real Dr. I prefer a functional medicine Dr.They are licensed MD's with addition "functional medicine" training. Focus on the basics - diet ("eat real food, mostly plants"), exercise (get outside when you can), sleep (8 hrs, get up early and get moving), stress - (I changed my job and try to meditate), community/friendship/love - blah blah you all know the basics.
Good onlineresources: Dr Kharrazian, Dr Amy Myers, Dr Sarah Ballantyne, Dr. Terry Wahls. These are all autoimmune/gut focused Dr's because I know I have an issue there. I don't know what else Accutune did or triggered in me, but I am working on that things I do know are a problem. And I am seeing positive results.
My 2 cents. Gonna go make a veggie smoothie.
Great, just filled out the form from the UK for the side effects. Hopefully some action will come out of it!
27 minutes ago, Quinc said:Would this help with accutane induced hair loss too? And what is the exact method? Like taking it on and off for a few months?
This is Dr Pezzi method.
Taking finasteride for about 1 month or more and after stopping, healing appears. I dont know about hair. My hair loss came back after stopping accutane.
2 minutes ago, isojim said:This is Dr Pezzi method.
Taking finasteride for about 1 month or more and after stopping, healing appears. I dont know about hair. My hair loss came back after stopping accutane.
Thanks might look into trying this. But I suspect accutane triggered an autoimmune effect on my hair, which is causing inflammation and lichen planopilaris
Guys, here is a bit strange question but it is important for me. I have some overbite issue. My upper teeth overlaps my lower ones more than 3mm's.. In normal people it is between 1- 2 mm's!
I wonder if PAS did this to me because i didn't remember having this imbalance on my side profile at 16.. Our bones need proper hormones to grow. The Mandible bone (lower jaw) can grow faster or slower in relation to the upper jaw. It may be your genetics or other factors, such as hormonal imbalances. Sounds familiar?
Has anyone here have overbite- receeding jaw issues? If so, since what age do you suffer from Accutane side effects? If you have overbite, receeding chin\ lips don't aligning vertically parallelfrom the side profile, please quote me and let me know.
The Mandible bone continues to grow till 20's. And low T or GH, possible in our case, could have an affect on this. Making it shorter than our upper jaw and causing front teeth overlapping the bottom.
So im concerned if PAS gave me this. I want to rule out the possibility that PAS had anything to do with this, please help me with your info guys.
Here is how to check the overbite: https://www.wikihow.com/Diagnose-an-Overbite
Mine is slight, but as a perfectionist person, i consider surgery or braces.
Source on mandible: https://pubmed.ncbi.nlm.nih.gov/2309666/#:~:text=Mandibular growth was found to,correlated at each age period.
I am using finasteride for 1 month and then stop it. Will update you.
On 1/24/2021 at 7:13 AM, isojim said:I am using finasteride for 1 month and then stop it. Will update you.
Please for your own good, do not use finasteride. I talked to a man name Dr. Pezzi, three and a half years ago and he said that both isotretinoin and finasteride cause permanent hormonal damage and he has tried both, isotretinoin being more severe than finasteride. He says it causes a temporary libido boost but eventually causes crippling side effects. I am begging you, do not do this to yourself!
I talked to a water fasting specialist about my condition and he suggested that itmight require a 40 day water fast to heal from something like isotretinoin. This of course seems completely absurd. Currently I am about 10-15 pounds overweight so it would be 20 days until the deep burn would start. I would do this immediately but I would have to take out a personal loan for this since I only have $3000 in my checking account. I could afford maybe a 15 day fast at a supervised center out of pocket without taking out a loan. A 40 day water fast costs roughly $6,000-$8,000. If I get enough support from you guys I might just take out $4,000 and do 40 days to see if 40 days would fix things. Enlightenment is the acceptance of the unknown. Since we don't have funding on the condition, we are going to have to be pioneers on the subject ourselves.
Are you of the opinion a lengthy water fast will reset these hormonal issues?
Im confused because we hear of people being treated and supposedly doing well on the Anti Vit A diet
Im unsure what the real prob is? Vit A toxicity or hormone issues?
I suppose either of these treatments would be beneficial providing you minimise Vit A intake both before and after you do them...
Hey guys! Prettylong time lurker on this topic. Ijust decided to create an account since I relate too much tomany of your stories.
My background:
I started accutane around 16 years old (23 now)and continued on and off for about ayear. This drug sucked me dry of all my body fluids and became unbearable. Completely changed my personality and became noticeably emotionless to everyone around me.
7 straight years its been and Ive never felt the same since. Im not majorlydepressed/suicidal but Im just completely helpless on this quest to search for a cure. Ive tried various nootropics but I feel like this has to bemore biological than anything right?
Now on to the solutions for fixing this self destruction from the drug. Out of all the700 pages here, theres gotta be somebody who hasfound one supplement/vitamin that put a noticeable improvement on themselves.
From skimming through 100s of pages ive came across thesefew interesting supplements:
Methionine, taurine, calcium d glucarnate. Also not to mention multiple liver detoxes which some of you have reported positive results from to say the least.
Im currently taking methionine, its too soon to speak on as Ive only been taking it for a week. I havent tried taurine/calcium d glucarnate yet but will do after my trial with methionine.
Also how about probiotics? Haventheard much of it here especially specific strains which targets mood more than other strains. I mean we have to have something wrong with our guts after taking this medicine.
P.S. sorry for the long wall of text. All of this was basically everything I wanted to get off my chest while reading all of your interesting topics lol.
2 hours ago, Accudonia said:Hey guys! Prettylong time lurker on this topic. Ijust decided to create an account since I relate too much tomany of your stories.
My background:
I started accutane around 16 years old (23 now)and continued on and off for about ayear. This drug sucked me dry of all my body fluids and became unbearable. Completely changed my personality and became noticeably emotionless to everyone around me.
7 straight years its been and Ive never felt the same since. Im not majorlydepressed/suicidal but Im just completely helpless on this quest to search for a cure. Ive tried various nootropics but I feel like this has to bemore biological than anything right?
Now on to the solutions for fixing this self destruction from the drug. Out of all the700 pages here, theres gotta be somebody who hasfound one supplement/vitamin that put a noticeable improvement on themselves.
From skimming through 100s of pages ive came across thesefew interesting supplements:
Methionine, taurine, calcium d glucarnate. Also not to mention multiple liver detoxes which some of you have reported positive results from to say the least.
Im currently taking methionine, its too soon to speak on as Ive only been taking it for a week. I havent tried taurine/calcium d glucarnate yet but will do after my trial with methionine.
Also how about probiotics? Haventheard much of it here especially specific strains which targets mood more than other strains. I mean we have to have something wrong with our guts after taking this medicine.
P.S. sorry for the long wall of text. All of this was basically everything I wanted to get off my chest while reading all of your interesting topics lol.
Sorry to hear your story, i hope you can beat this disease. We are very similar. I also took this poison at 16. Can you please and please answer my questions above? About jaw growth and overbite issues. Lower lip staying behind from side profile..
My post is just 3 messages above. Please quote me and contribute to my questions, i am close to figuring something out.
One more question, our clavicle\ shoulder bones suppose to grow up to 3cm's on each side between 16 and 25 years of age! Do you think your shoulders widened at least 2cms since PAS? 2CM's sound very hard to notice but it is not!! It is a very visible change on each side actually.
4 hours ago, Accudonia said:Hey guys! Prettylong time lurker on this topic. Ijust decided to create an account since I relate too much tomany of your stories.
My background:
I started accutane around 16 years old (23 now)and continued on and off for about ayear. This drug sucked me dry of all my body fluids and became unbearable. Completely changed my personality and became noticeably emotionless to everyone around me.
7 straight years its been and Ive never felt the same since. Im not majorlydepressed/suicidal but Im just completely helpless on this quest to search for a cure. Ive tried various nootropics but I feel like this has to bemore biological than anything right?
Now on to the solutions for fixing this self destruction from the drug. Out of all the700 pages here, theres gotta be somebody who hasfound one supplement/vitamin that put a noticeable improvement on themselves.
From skimming through 100s of pages ive came across thesefew interesting supplements:
Methionine, taurine, calcium d glucarnate. Also not to mention multiple liver detoxes which some of you have reported positive results from to say the least.
Im currently taking methionine, its too soon to speak on as Ive only been taking it for a week. I havent tried taurine/calcium d glucarnate yet but will do after my trial with methionine.Also how about probiotics? Haventheard much of it here especially specific strains which targets mood more than other strains. I mean we have to have something wrong with our guts after taking this medicine.
P.S. sorry for the long wall of text. All of this was basically everything I wanted to get off my chest while reading all of your interesting topics lol.
As much as it would seem like you could simply take a supplement to cure the issue, you have to understand some of these things from a Biological perspective. Human beings and pretty much any organism on earth are not designed to deal with the level of retinol (cis-13 retinoic acid(isotretinoin aka accutane)) toxicity for an extended period of time. What you are going to have to understand is that the fact that it is able to change anything in the body based on something that is taken orally, mean that pretty much everything that in the body is being changed on an epigenetic level. We live in a superficial society that deems a sacrifice like this to be worth it. Many people, myself included experience long term if not permanent hormonal imbalance as long as dysfunctional adrenals, meaning the adrenaline system does not work in the way that we are genetically designed to. It is my theory that pretty much any other organism that undertook this type of toxicity would not be able to sustain itself and go into a period of starvation. At this point, one of two things would happen, the organism would reset epigentically or the organism would die.
Luckily modern society allows us to survive even being crippled, the digestive problems that we are talking about are at this point theoretical. Personally, my hypothesis is that there is an autoimmune issue with the endocrine system. At this point we are just trying to figure out if there is anything that will change condition in the long term. We have come to realize that supplementation does not actually improve anything rather a low vitamin A diet along with fasting are our two ideas about how to improve things. Modern medicine has the approach that we can put pretty much anything into our system to fix pretty much any condition, I am here to say that this is a stigma that has been created by doctors and their egos and perpetuated in our education systems. Unfortunately, there are no known solutions, we are simply pioneers in the field of healing from this terrible and mostly unrecognized condition. If you are looking for external support and looking to assess yourself, do not see a main stream doctor. Target a naturopathic doctor and have them take a blood sample. I would like to see a least 3 people reporting the results of a blood sample analysis on here so we can take a look at what is being affected. Ideally we would get 10 or more blood analysis to identify which bodilyfunctions are being affected. I will post probably tomorrow what my blood sample results are, notably my topterone is way lower than it is supposed to be an from the information that I have gathered this is not uncommon. A doctor looking at my blood analysis was also able to determine that my adrenal system was not working properly.