- Messages
- 24
Hi there everyone. Sorry for the terribly long backstory. Hopefully it adds in some context
I also apologize for the scattered message. VERY difficult to type anything at the moment. My days just consist of colouring in.
Some backstory:
For most of my life(13+) I've suffered from lack of motivation/ambition/drive, along with a host of other symptoms like OCD, lack of concentration, constant flushed face, lack of energy(but never CFS, where I was bed ridden but couldn't exercise much either) among other symptoms(Never brain fog though)
I was on SSRI's that my GP prescribed since I was 13 and on Vitamin/Mineral supplements, which were quite high doses it seems.
In 2016, I started getting urinary urgency and I said enough was enough and tried to look for answers. I first started cutting down my SSRI's until I stopped taking them, I stopped all the supplements I was given to "help me"
During the course of 2017, I had stopped processed foods and eating at restaurants(which I use to do quite often) and started a whole foods diet. I improved quite a bit but was still suffering from terrible urgency and some other symptoms. My new GP then recommended I try the RPAH diet as he suspected I had a food chemical intolerance. Over the course of the next month I transitioned to the strict diet. Most of my symptoms drastically improved. I no longer had OCD, my concentration was back and I didn't even need Ritalin to help me(which didn't work anyway. They took an hour to kick in and lasted an hour before the effect wore off and another dose wouldn't work unless I went off them for a week. Even the slow release was useless. So everything was going decently. The RPAH group mentioned that I had to go without symptoms for 2 weeks before I could challenge myself, I never understood why I couldn't go even ONE minute with a symptom or two(I'm normally suffering from 3 at a time(As of now, 6!) So that challenge period never came. I started researching WHY I had food chemical intolerance as even my new GP was clueless, even though his wife is a million times worse than me..
My dietitian told me I couldn't carry on the way I was going on the strict diet as I needed to eat more carbs, more protein and more vegetables, so I followed her advice and things just went downhill from there, I was getting more symptoms more often, I didn't know where to turn.
So around December I tried the GAPS diet to "heal my gut" but that turned out to be the biggest mistake I've ever made. After 3 days of eating chicken broth, I started to get brain fog, which I never ever had in my life before. I couldn't think AT ALL, words were slipping from my mind mid sentence. I was looking at walls all day it was that bad, so I went off that back onto the RPAH diet and things improved... they just never went back to the way it was before in 2017 during the RPAH diet, or even previously!
So after all that I realized sulphur was my problem and the sick joke was that all the low salicylate/amine/glutamate foods I was to avoid were ALL sulphur foods (Cabbage, Brussel Sprouts, leeks, meat, eggs, dairy, legumes etc) I was encouraged to eat a lot of that to meet RDA's.. So you can see I was setup to fail from the beginning. I never use to overdue protein during the RPAH diet, it was just 100g lamb and 1 medium chicken breast per day, maybe an egg every 2nd day, some lentils, a cup of milk etc. I should have seen the signs, I was getting symptoms then but they were just sooo subtle I couldn't tell..
Currently:
Am going for tests in the next month or two after saving up, so not sure yet if its from a toxic build up of Mercury, SIBO, genetics or all of the above but I am struggling with sulphur in my diet.
Now I am sooo worse of now then I ever was in my entire life. I'm still on a whole food diet, can't do RPAH
I can't even do supplements to meet RDA's as I am incredibly susceptible to petroleum derivatives which explains why going off processed foods really helped me, no additives etc but all the B Vitamins are made from coal tar and other terrible things.
I couldn't survive getting my RDA's from whole foods as B12 was incredibly hard to come by and I was restricted food wise because of salicyaltes.
I had tried in the last month prior a B complex with cyanocobalamin and folinic acid, just to keep my RDA's up but that backfired. All my life I've been sensitive to plastic or any petroleum derivatives. The worst I ever was back in the day was that I couldn't wear headphones without burning my ears, some clothes and my bedding would cause me to itch constantly(Hence antihistamines all my life, dumb GP) BUT now... I can't touch ANYTHING plastic. My computer mouse, nope. The list goes on. Plastic water makes me react terribly. That has come and gone since 2017+ but now it's CONSTANT. I had to swap to glass water(which isn't cheap but what can I do). Can't do tap water as it's too polluted and a carbon filter is FULL of sulphites, I found that out the hard way when the filtered water I tried caused me to stop breathing, never again.
So I stopped all supplements and I cut back on meat. I eat 33g of lamb per day, with 90g cooked lentils, brown rice, butter and a mix of vegetables like butternut squash, sweet potato, celery, carrots and courgettes, I had to take Kirkmans Phenol Assist just to get rid of the facial flushing, urgency etc...
Now my brain fog has gone, BUT replaced with brain/head PRESSURE. Still getting shortness of breath and low blood pressure readings/symptoms. I wake up with pressure in my head and it doesn't EVER go away.
I stopped the salicylates vegetables(Carrots, butternut squash, sweet potato, courgettes) for 1 day and I can touch plastic again, thankfully but now I have no idea what to do about the head pressure... is this sulphur related? I have never experienced this in my life before.. feels like I'm in a pressure cooker...
So I suspected POTS or anemia, so I had blood tests done for that to check. Everyone mentioned choline helps with POTS and I realized I might not be getting enough from the diet, obviously. So I tried sunflower lecithin powder(Though I suppose I'm just adding to the problem because I know sunflower seeds are high in sulphur, as is everything...)
I will post my results if someone might help. It does seem to point to Anemia of some kind. I tried checking with my GP, who didn't even BOTHER to check my results, just emailed them to me without saying anything. I can't interpret this.. He doesn't believe(or know) about Methylation or any of those factors, so I can't rely on him. I will be finding an expert but very difficult to do as I am in South Africa. Will look for an international expert, it seems.. If anyone has any advise about finding one, that would be great. I thought about checking with a Hematologist but I figure that's useless if it's caused by my genetics, hell or even SIBO, they would be unable to advise me on anything useful, so why waste my time. I wasted my time going to a Urologist in 2016 about my urgency and they found nothing wrong, so a specialist seems to be a waste as this is a holistic problem.
If anyone can advise me about my blood work and what I can do in the meantime food wise, what tests I should be looking to do first, what my next steps would be. I'd appreciate that. I have the money saved for tests and doctors now, I just would like to know where to start with that and what I can do to survive and hopefully entertain myself till then. If anyone knows what I can do regarding water, that would be a blessing.
I also realized it might be a thyroid problem as ALL my issues started around puberty but my also had a very bad life crisis around that time, so I was under tremendous stress and I was on antibiotics quite often back then because of "infections" but could've just been food chemicals etc as I use to have sore throats OFTEN. So I will definitely be getting a stool analysis to see about gut dysfunction as my stools aren't right. I have managed to get regular smooth bowel movements but for the last 4 months they have been yellow. My bilirubin tests check out. I was told it's because when going on the RPAH/FAILSAFE, I no longer am getting any dark green vegetables or any aged red meat which affects it. Not to mention possible underlying anemia (though not iron deficient it seems)
I got a thyroid test done last year and my GP never said anything about it. At the time I thought it was because everything checked out, but now either he doesn't know or didn't bother to look, so I can post those results too if anyone can make heads or tails of that. It's missing 3 of the main antibodies that are used to test for Graves I believe, but can't get those tests done here...
Thanks everyone, sorry for the incredibly long message but I am at my wits end right now and just want to know where to go next.
I also apologize for the scattered message. VERY difficult to type anything at the moment. My days just consist of colouring in.
Some backstory:
For most of my life(13+) I've suffered from lack of motivation/ambition/drive, along with a host of other symptoms like OCD, lack of concentration, constant flushed face, lack of energy(but never CFS, where I was bed ridden but couldn't exercise much either) among other symptoms(Never brain fog though)
I was on SSRI's that my GP prescribed since I was 13 and on Vitamin/Mineral supplements, which were quite high doses it seems.
In 2016, I started getting urinary urgency and I said enough was enough and tried to look for answers. I first started cutting down my SSRI's until I stopped taking them, I stopped all the supplements I was given to "help me"
During the course of 2017, I had stopped processed foods and eating at restaurants(which I use to do quite often) and started a whole foods diet. I improved quite a bit but was still suffering from terrible urgency and some other symptoms. My new GP then recommended I try the RPAH diet as he suspected I had a food chemical intolerance. Over the course of the next month I transitioned to the strict diet. Most of my symptoms drastically improved. I no longer had OCD, my concentration was back and I didn't even need Ritalin to help me(which didn't work anyway. They took an hour to kick in and lasted an hour before the effect wore off and another dose wouldn't work unless I went off them for a week. Even the slow release was useless. So everything was going decently. The RPAH group mentioned that I had to go without symptoms for 2 weeks before I could challenge myself, I never understood why I couldn't go even ONE minute with a symptom or two(I'm normally suffering from 3 at a time(As of now, 6!) So that challenge period never came. I started researching WHY I had food chemical intolerance as even my new GP was clueless, even though his wife is a million times worse than me..
My dietitian told me I couldn't carry on the way I was going on the strict diet as I needed to eat more carbs, more protein and more vegetables, so I followed her advice and things just went downhill from there, I was getting more symptoms more often, I didn't know where to turn.
So around December I tried the GAPS diet to "heal my gut" but that turned out to be the biggest mistake I've ever made. After 3 days of eating chicken broth, I started to get brain fog, which I never ever had in my life before. I couldn't think AT ALL, words were slipping from my mind mid sentence. I was looking at walls all day it was that bad, so I went off that back onto the RPAH diet and things improved... they just never went back to the way it was before in 2017 during the RPAH diet, or even previously!
So after all that I realized sulphur was my problem and the sick joke was that all the low salicylate/amine/glutamate foods I was to avoid were ALL sulphur foods (Cabbage, Brussel Sprouts, leeks, meat, eggs, dairy, legumes etc) I was encouraged to eat a lot of that to meet RDA's.. So you can see I was setup to fail from the beginning. I never use to overdue protein during the RPAH diet, it was just 100g lamb and 1 medium chicken breast per day, maybe an egg every 2nd day, some lentils, a cup of milk etc. I should have seen the signs, I was getting symptoms then but they were just sooo subtle I couldn't tell..
Currently:
Am going for tests in the next month or two after saving up, so not sure yet if its from a toxic build up of Mercury, SIBO, genetics or all of the above but I am struggling with sulphur in my diet.
Now I am sooo worse of now then I ever was in my entire life. I'm still on a whole food diet, can't do RPAH
I can't even do supplements to meet RDA's as I am incredibly susceptible to petroleum derivatives which explains why going off processed foods really helped me, no additives etc but all the B Vitamins are made from coal tar and other terrible things.
I couldn't survive getting my RDA's from whole foods as B12 was incredibly hard to come by and I was restricted food wise because of salicyaltes.
I had tried in the last month prior a B complex with cyanocobalamin and folinic acid, just to keep my RDA's up but that backfired. All my life I've been sensitive to plastic or any petroleum derivatives. The worst I ever was back in the day was that I couldn't wear headphones without burning my ears, some clothes and my bedding would cause me to itch constantly(Hence antihistamines all my life, dumb GP) BUT now... I can't touch ANYTHING plastic. My computer mouse, nope. The list goes on. Plastic water makes me react terribly. That has come and gone since 2017+ but now it's CONSTANT. I had to swap to glass water(which isn't cheap but what can I do). Can't do tap water as it's too polluted and a carbon filter is FULL of sulphites, I found that out the hard way when the filtered water I tried caused me to stop breathing, never again.
So I stopped all supplements and I cut back on meat. I eat 33g of lamb per day, with 90g cooked lentils, brown rice, butter and a mix of vegetables like butternut squash, sweet potato, celery, carrots and courgettes, I had to take Kirkmans Phenol Assist just to get rid of the facial flushing, urgency etc...
Now my brain fog has gone, BUT replaced with brain/head PRESSURE. Still getting shortness of breath and low blood pressure readings/symptoms. I wake up with pressure in my head and it doesn't EVER go away.
I stopped the salicylates vegetables(Carrots, butternut squash, sweet potato, courgettes) for 1 day and I can touch plastic again, thankfully but now I have no idea what to do about the head pressure... is this sulphur related? I have never experienced this in my life before.. feels like I'm in a pressure cooker...
So I suspected POTS or anemia, so I had blood tests done for that to check. Everyone mentioned choline helps with POTS and I realized I might not be getting enough from the diet, obviously. So I tried sunflower lecithin powder(Though I suppose I'm just adding to the problem because I know sunflower seeds are high in sulphur, as is everything...)
I will post my results if someone might help. It does seem to point to Anemia of some kind. I tried checking with my GP, who didn't even BOTHER to check my results, just emailed them to me without saying anything. I can't interpret this.. He doesn't believe(or know) about Methylation or any of those factors, so I can't rely on him. I will be finding an expert but very difficult to do as I am in South Africa. Will look for an international expert, it seems.. If anyone has any advise about finding one, that would be great. I thought about checking with a Hematologist but I figure that's useless if it's caused by my genetics, hell or even SIBO, they would be unable to advise me on anything useful, so why waste my time. I wasted my time going to a Urologist in 2016 about my urgency and they found nothing wrong, so a specialist seems to be a waste as this is a holistic problem.
If anyone can advise me about my blood work and what I can do in the meantime food wise, what tests I should be looking to do first, what my next steps would be. I'd appreciate that. I have the money saved for tests and doctors now, I just would like to know where to start with that and what I can do to survive and hopefully entertain myself till then. If anyone knows what I can do regarding water, that would be a blessing.
I also realized it might be a thyroid problem as ALL my issues started around puberty but my also had a very bad life crisis around that time, so I was under tremendous stress and I was on antibiotics quite often back then because of "infections" but could've just been food chemicals etc as I use to have sore throats OFTEN. So I will definitely be getting a stool analysis to see about gut dysfunction as my stools aren't right. I have managed to get regular smooth bowel movements but for the last 4 months they have been yellow. My bilirubin tests check out. I was told it's because when going on the RPAH/FAILSAFE, I no longer am getting any dark green vegetables or any aged red meat which affects it. Not to mention possible underlying anemia (though not iron deficient it seems)
I got a thyroid test done last year and my GP never said anything about it. At the time I thought it was because everything checked out, but now either he doesn't know or didn't bother to look, so I can post those results too if anyone can make heads or tails of that. It's missing 3 of the main antibodies that are used to test for Graves I believe, but can't get those tests done here...
Thanks everyone, sorry for the incredibly long message but I am at my wits end right now and just want to know where to go next.