I understand that most people will doubt many things in this story, which is part of the reason it's hard to get help. Most doctors simply don't believe me, I'm convinced most people who hear this won't believe it. So please humor me and just pretend this is all true and accept that maybe freak occurrences like this do happen, and if you were in this situation, what would you do?
Ill try to write a quick version of this. In April of 2020 it all started with a powerful sudden case of restless leg syndrome in my right leg which was also felt in my right arm and sometimes my whole body. It was a horrible month until i found i was vitamin d deficient and upon taking prescribed 50,000iu of vitamin d I felt incredible relief. I continued taking 50,000iu for about a week and also took k2 and magnesium but was also taking loratadine for allergies and supplements with 5ht for sleeping problems. One night at 9pm i had a full on attack of some sort that lasted for 4 hours and fits the description of serotonin syndrome, yet i really have no confidence to say what it actually was. (super cold inside, body shaking, nausea, diarrhea, distorted vision, tinnitus on 1000 super loud and tense muscles all over, and the feeling that electricity was running through my brain and my heart about to bust open through my chest). I thought i was living the last minutes of my life the whole time, but after taking an ungodly amount of my sleeping supplement, eventually i fell asleep. The next night, after being reassured vitamin d couldn't hurt me, i took another 50,000iu pill and that night at the same time i had the same attack, this time i went to the ER. (I'm not blaming the vitamin d, i have no clue why it happened) They connected me to machines that monitor my brain and heart and showed me that the machine said absolutely nothing was wrong with either. they gave me a number to a psychiatrist and some xanax seemed to help a little but the damage was done. Now every single day i would get a slighly less intense version of this attack. i stopped taking vitamin d and after about a month i started to feel normal again. This was the beginning of my decline. Having no clue about anything health-related i started looking for answers online. Nothing i did gave me relief, i had no clue that what i put in my body could be causing it and thought only something i could put in my body would be able to fix it.
I lived this way for 9 months, having intense reactions randomly on a daily basis clueless as to why. Fighting suicidal thoughts daily. Went to south america and decided the sun could heal me. Thats when i realized the sun was one of the things that was causing these powerful reactions. I found this interesting because it was high vitamin d that i took initially when this all started. My 3rd attack happened 9 months later when i went under that powerful sun and had a delayed reaction. After about an hour under the sun, it wasn't until 10 pm when i was awakened from my sleep with the same exact attack i had on day 1. There is no question that the same thing just happened from the sun, that happened the day i took all that vitamin d and loratadine. I finally found Ray Peat forums after 9 months of looking for answers, came across the FPS course and it was the first time I had an idea of what was going on. Learning how to eat metabolically and avoid stress responses was a life-saving experience. I still have no clue what was wrong with me, but by paying attention to how things affected me, i quickly found that most proteins gave me a horrible reaction. I say reaction because these are not normal stress responses, the reactions are smaller versions of the full-fledged attack I had on day one.
So after a lot of trial n error, i found that most of what i was eating was causing these reactions. Even many supplements give me a powerful reaction. Calcium carbonate messes me up pretty bad. Most protein will give me a week-long reaction. I can only eat great lakes gelatin and only with a high amount of fresh OJ to avoid a stress response and Parmigiano Reggiano is my main source of fat except for when i have the carrot salad with coconut oil which does not cause reactions so i eat it daily. I finally reached the point where i can avoid reactions and now the only things i can eat are fresh squeezed OJ, cheese, and gelatin and coffee with honey. The only supplements i can use without a stress response is Solban from idea labs rubbed all over my gut since i gained 60 pounds being that the only thing that can calm my stress responses are massive amounts of OJ, but the solban does a great job of heating me up. It seems like anything i put in my stomach will cause a powerful reaction. Last time i tried even 400iu of vitamin d oil i had a weeklong reaction. Even vegetable broth of spinach and kale that i tried gave me a reaction. I believe tryptophan and calcium are causing reactions. The good news is my brain is working again and im able to work but my energy is still super limited, i can't be on my feet for more than a couple of hours without a stress response if I don't have enough OJ. I can get away with activity, but only with a bottle of OJ with me constantly feeding me sugar.
My brain is doing better today because i can go longer without a reaction to let my mind heal. But the bad news is that it feels like a window is closing on me. it feels like as time goes by, i become more reactive to more things. I used to be able to drink milk, supplement DHEA, have bone broth, and all the stuff i needed to heal, over time my body started reacting badly to those too. This is the part that scares me the most. By avoiding reactions my mind does heal, but my body seems to slowly change for the worse, not better.
oh and here is an interesting fact, when i get these reactions strong enough, they operate completely independent of my blood sugar and metabolism. The FPS course did a great job of teaching me how to support my thyroid function and balance blood sugar and avoid harmful substances, but when i get a powerful reaction, it doesn't matter how good my temperature is, the serotonin-like feelings just continue, even if my pulse and temp are perfect. I know it isn't adrenaline because of what i am consuming, the science says that my thyroid is functioning well.
And there lies the mystery, NOBODY even has a clue as to what could be the issue. my blood work is mostly normal except for high eosiniphilios and lactic acid. most stuff is normal. 17 doctors couldn't help me and 5 sent me to a psychiatrist. They bring up stuff like anxiety and fear of the sun, no, I do not suffer from any social fear, I love people, I love the sun *and enjoyed it on a tropical vacation only months before this happened., I am not seeking attention. Something happened to me and it may be a one-in-a-million case. Its been 2 and a half years and thanks to my high temps im able to maintain i can keep a positive mind and not really get depressed.
its been 2 and a half years now. I live indoors during the day and only go out at night and have to bring my OJ and cheese everywhere i go along with progesterone and activated charcoal which seem to be the only things that help me find relief from these strong reactions along with the OJ. I have to avoid sun exposure even through glass windows it can cause reactions. But i am worried that I'm not doing enough, this isn't going to fix itself, and I feel really embarrassed talking about it because most people just think I'm crazy because this doesn't fit anybody's medical expertise, but im done feeling embarrassed, im desperate and i have to find a way, i can't live like this. I just want to be able to walk down the street like normal people without being wrecked for a week with serotonin-like symptoms.
So if you were able to get through all that, i am looking for ideas. What mechanisms can i test that arent your basic bloodwork? What would you look for if this happened to you? Basic bloodwork seems pointless. I wish there were doctors like TV doctors that find a patient and try to find out what is wrong with them. I am willing to give up my life savings to fix this. But i am lost. When every doctor i talk to looks at me sideways. When everything they say will help me only gives me horrible reactions. Are there any organizations i can reach out too? Any special doctors who take on mysterious cases? I feel like im in the twilight zone sometimes. keeping high temps is preventing me from suicidal thoughts and is actually helping me find the energy to keep fighting and looking for solutions. if i can just get a professional to believe this is true, maybe I can get some direction on what to check my body for.
if you read all of this, thank you. ive been previously too embarassed and feeling stupid to ask for help. i think i have been traumatized by the look on doctors faces that i stopped asking around. but i dont have the luxury of not trying anymore, whatever this is, its not showing any signs of naturally being healed, even with the minimal diet of OJ gelatin and cheese and constantly having raised temperatures. im open to any suggestions.
Ill try to write a quick version of this. In April of 2020 it all started with a powerful sudden case of restless leg syndrome in my right leg which was also felt in my right arm and sometimes my whole body. It was a horrible month until i found i was vitamin d deficient and upon taking prescribed 50,000iu of vitamin d I felt incredible relief. I continued taking 50,000iu for about a week and also took k2 and magnesium but was also taking loratadine for allergies and supplements with 5ht for sleeping problems. One night at 9pm i had a full on attack of some sort that lasted for 4 hours and fits the description of serotonin syndrome, yet i really have no confidence to say what it actually was. (super cold inside, body shaking, nausea, diarrhea, distorted vision, tinnitus on 1000 super loud and tense muscles all over, and the feeling that electricity was running through my brain and my heart about to bust open through my chest). I thought i was living the last minutes of my life the whole time, but after taking an ungodly amount of my sleeping supplement, eventually i fell asleep. The next night, after being reassured vitamin d couldn't hurt me, i took another 50,000iu pill and that night at the same time i had the same attack, this time i went to the ER. (I'm not blaming the vitamin d, i have no clue why it happened) They connected me to machines that monitor my brain and heart and showed me that the machine said absolutely nothing was wrong with either. they gave me a number to a psychiatrist and some xanax seemed to help a little but the damage was done. Now every single day i would get a slighly less intense version of this attack. i stopped taking vitamin d and after about a month i started to feel normal again. This was the beginning of my decline. Having no clue about anything health-related i started looking for answers online. Nothing i did gave me relief, i had no clue that what i put in my body could be causing it and thought only something i could put in my body would be able to fix it.
I lived this way for 9 months, having intense reactions randomly on a daily basis clueless as to why. Fighting suicidal thoughts daily. Went to south america and decided the sun could heal me. Thats when i realized the sun was one of the things that was causing these powerful reactions. I found this interesting because it was high vitamin d that i took initially when this all started. My 3rd attack happened 9 months later when i went under that powerful sun and had a delayed reaction. After about an hour under the sun, it wasn't until 10 pm when i was awakened from my sleep with the same exact attack i had on day 1. There is no question that the same thing just happened from the sun, that happened the day i took all that vitamin d and loratadine. I finally found Ray Peat forums after 9 months of looking for answers, came across the FPS course and it was the first time I had an idea of what was going on. Learning how to eat metabolically and avoid stress responses was a life-saving experience. I still have no clue what was wrong with me, but by paying attention to how things affected me, i quickly found that most proteins gave me a horrible reaction. I say reaction because these are not normal stress responses, the reactions are smaller versions of the full-fledged attack I had on day one.
So after a lot of trial n error, i found that most of what i was eating was causing these reactions. Even many supplements give me a powerful reaction. Calcium carbonate messes me up pretty bad. Most protein will give me a week-long reaction. I can only eat great lakes gelatin and only with a high amount of fresh OJ to avoid a stress response and Parmigiano Reggiano is my main source of fat except for when i have the carrot salad with coconut oil which does not cause reactions so i eat it daily. I finally reached the point where i can avoid reactions and now the only things i can eat are fresh squeezed OJ, cheese, and gelatin and coffee with honey. The only supplements i can use without a stress response is Solban from idea labs rubbed all over my gut since i gained 60 pounds being that the only thing that can calm my stress responses are massive amounts of OJ, but the solban does a great job of heating me up. It seems like anything i put in my stomach will cause a powerful reaction. Last time i tried even 400iu of vitamin d oil i had a weeklong reaction. Even vegetable broth of spinach and kale that i tried gave me a reaction. I believe tryptophan and calcium are causing reactions. The good news is my brain is working again and im able to work but my energy is still super limited, i can't be on my feet for more than a couple of hours without a stress response if I don't have enough OJ. I can get away with activity, but only with a bottle of OJ with me constantly feeding me sugar.
My brain is doing better today because i can go longer without a reaction to let my mind heal. But the bad news is that it feels like a window is closing on me. it feels like as time goes by, i become more reactive to more things. I used to be able to drink milk, supplement DHEA, have bone broth, and all the stuff i needed to heal, over time my body started reacting badly to those too. This is the part that scares me the most. By avoiding reactions my mind does heal, but my body seems to slowly change for the worse, not better.
oh and here is an interesting fact, when i get these reactions strong enough, they operate completely independent of my blood sugar and metabolism. The FPS course did a great job of teaching me how to support my thyroid function and balance blood sugar and avoid harmful substances, but when i get a powerful reaction, it doesn't matter how good my temperature is, the serotonin-like feelings just continue, even if my pulse and temp are perfect. I know it isn't adrenaline because of what i am consuming, the science says that my thyroid is functioning well.
And there lies the mystery, NOBODY even has a clue as to what could be the issue. my blood work is mostly normal except for high eosiniphilios and lactic acid. most stuff is normal. 17 doctors couldn't help me and 5 sent me to a psychiatrist. They bring up stuff like anxiety and fear of the sun, no, I do not suffer from any social fear, I love people, I love the sun *and enjoyed it on a tropical vacation only months before this happened., I am not seeking attention. Something happened to me and it may be a one-in-a-million case. Its been 2 and a half years and thanks to my high temps im able to maintain i can keep a positive mind and not really get depressed.
its been 2 and a half years now. I live indoors during the day and only go out at night and have to bring my OJ and cheese everywhere i go along with progesterone and activated charcoal which seem to be the only things that help me find relief from these strong reactions along with the OJ. I have to avoid sun exposure even through glass windows it can cause reactions. But i am worried that I'm not doing enough, this isn't going to fix itself, and I feel really embarrassed talking about it because most people just think I'm crazy because this doesn't fit anybody's medical expertise, but im done feeling embarrassed, im desperate and i have to find a way, i can't live like this. I just want to be able to walk down the street like normal people without being wrecked for a week with serotonin-like symptoms.
So if you were able to get through all that, i am looking for ideas. What mechanisms can i test that arent your basic bloodwork? What would you look for if this happened to you? Basic bloodwork seems pointless. I wish there were doctors like TV doctors that find a patient and try to find out what is wrong with them. I am willing to give up my life savings to fix this. But i am lost. When every doctor i talk to looks at me sideways. When everything they say will help me only gives me horrible reactions. Are there any organizations i can reach out too? Any special doctors who take on mysterious cases? I feel like im in the twilight zone sometimes. keeping high temps is preventing me from suicidal thoughts and is actually helping me find the energy to keep fighting and looking for solutions. if i can just get a professional to believe this is true, maybe I can get some direction on what to check my body for.
if you read all of this, thank you. ive been previously too embarassed and feeling stupid to ask for help. i think i have been traumatized by the look on doctors faces that i stopped asking around. but i dont have the luxury of not trying anymore, whatever this is, its not showing any signs of naturally being healed, even with the minimal diet of OJ gelatin and cheese and constantly having raised temperatures. im open to any suggestions.
