Im a 27 year old male from Sweden who have been sick for perhaps all my life, or since i was very young.
I have been going to the doctors for almost 10 years and im still undiagnosed, pretty much all of my tests have been normal.
I recently found this forum and decided to share my situation.
I divide my symptoms into 3 sections:
Appearance - I look ill, pale and sick. My skin colour changes very easily depending on what type of lighting there is. If i for example go outside an autumn/winter day my face is extremely grayish/white.
My eyes are very tired/staring looking with eyelids hanging and dark rings.
I have never seen anyone else that looks like this, perhaps only a few people that look similar.
Brain - It feels like my brain and thinking is blocked. I have hard time learning new things because information doesn't stay, in conversations i often forget what im going to say, concentration problems, nervousness, easily irritated
Body/The Rest - I have a bad body odor and my hair is dry and lifeless.
Fatigue, no matter how much i sleep i feel tired. Its not that i have to sleep but always tired and no energy.
I don't however have any pain whatsoever and i can move perfectly.
Now to the part of my story that is very remarkable and the reason why i post on this forum:
In 2004 i took accutane against my accne. I took a regular cure for 7 months and then stopped.
A few months after i stopped i noticed that i looked much MUCH better then i have ever done before, skin color, eyes, hair and even body odor, everything changed to normal for me.
Then i noticed that i could read articles, watch movies and understand pretty much everything. When i talked to people it was like i saw the words in front of me so i knew what i was going to say all the time. My brain started to work normally!
And i also felt healthy in my body for perhaps the first & only time in my life, the feeling was unreal, the fatigue and tiredness went away.
I now realized that accutane cured something in my body i didn't realize i even had. Sure i had my suspicion that something could be wrong but i was so young and i didn't take my health seriously.
This healthy condition lasted for about 6 months and then when i noticed that i again looked pale i realized that i was going to be sick again.
For every week i felt worse & worse, the symptoms slowly came back again.
I have no idea what accutane cured in my body but i know that i have a disease that is treatable.
I have never seen/heard about anyone being cured or feeling better by taking accutane, its always about the side effects and how it destroyed their life afterwards. Its SO weird that i got cured from a medicine that is only known for its side effects.
I have done so many tests during the years and i have checked lyme disease, thyroid & so on
The only thing i have had low levels of since my first blood test is cortisol, but i have had an endocrine investigation and they didn't find anything.
Last year i took 2 cortisol tests and they were both kinda low, 180 and 40, (200 is reference level)
I have tried Hydro cortisone but it makes no difference at all..
It feels really hopeless, i have never been able to live a normal life and nothing in my situation tells that i will find this disease..
If anyone have any ideas what accutane cured in my body or recognize the symptoms i would really(!) appreciate your comments & thoughts!
Oh, and accutane eliminateded my accne, havent had it since then.
Isotretinoin has immunomodulatory effects. It's possible that you're suffering from some sort of mild autoimmune disease, or perhaps an overgrowth of a particular microbe that is releasing endotoxins into your blood. It could even be food-related, in that your immune system is responding to food antigens that you regularly eat, and this response was disrupted temporarily by your treatment. There are a lot of ways you could go about testing these things, but the easiest is diet. You could try going on some sort of a paleo diet for a while, eat safe foods like whole cuts of fish, rice, fruits and vegetables, and forego the wheat and dairy and sugar for a bit.
thanks for the answer
It may very well be an autoimmune disease, thats what i think. More people claim however that they got an autoimmun disease from accutane, not being treated.
I dont think it has something to do with the diet, i have tryed avoiding lactose and gluten, its no difference.
I dont think its because of microbes or bacterias either because i have now for the second time done gastroscopys and colonoscopy and they didnt find anything (havent recieved the latest results tho), i have done self payed tests looking for bacterias and i have taken bacteria related supliments but no difference here either. =/
In fact nothing has ever made any difference, no suppliments or medicine, never felt worse or better its always on the same level