- Messages
- 39
Hi guys,
I'm curious about what might be considered safer bets, without a big risk of making things worse. Obviously, everyone will be different, but still..
Some random points:
- I experienced a couple remissions previously, and episodes with mild, but I tried 100s of therapies and supplements, so have no idea what did it, unfortunately. Now I am trying a more systematic approach.
- I first experienced gastritis when I was 14 (now 35) and many symptoms started then. I also had a microbiome test recently, which revealed all sorts of gut dysbiosis.
- OAT in 2020 revealed high oxalates, high tartaric acid, high uric acid and slightly impaired mito. I am worse since then, though.
- I know that I had mono in 2007 and was then diagnosed with fibro. EBV titres were high in 2009 and IgM was also high, but that's all I know. Also had tonsillitis and recurring cold sores (herpes simplex) since age 2. My last bout of me/cfs also started with a cold sore. I was born preterm and had many complications from birth, was not breast fed, etc - makes me wonder further about my microbiome.
- I started to experience severe PMDD in 2017 and that's when things really went downhill. At the time, my symptoms were mostly emotional (but extreme) during luteal phase, and in 2018 my ex partner and I both started to experience hundreds of other symptoms at the time (I suspected mold or Lyme. Maybe mold, and when we moved, we did improve significantly).
- I think that methylation protocols always exacerbated symptoms, but perhaps it's an indicator that it's an avenue I need to pursue and just take it slow. Methylation tests did reveal issues, and also low copper and ceruloplasmin.
- Nowadays, my symptoms are 100x worse during ovulation and then luteal phase. During ovulation itself I feel very anxious and get insomnia, and then crash for a few days. Then I feel a bit better again (not great, but more functional), and then for 7 days before my period I cannot function at all - extreme fatigue, extreme reactions to food (esp histamine), air hunger, anxiety, insomnia. I also have UTIs before my period, every single time. I took DIM and calcium d-glucarate on a whim a few years ago, and it helped, but back then I had clear symptoms of high estrogen, including breast tenderness and acne. It helped and also helped to lose weight. I was also diagnosed with PCOS in 2006 and was on Yaz birth control and then spironolactone. Perhaps this is what caused the earlier "remissions". I am tempted to try progesterone oil, but am not sure. This is where the dilemma comes in..
- I have limited funds, but may be able to afford one or two tests, depending on the tests. I don't know whether to have a Dutch cycle mapping test, to see what's happening with hormones, since it's a huge part of things for me. I feel completely normal and my best when my period starts. On the other hand, there must be a deeper root cause to the hormonal issues.
- Not diagnosed with POTS (not had the test), but my heart rate shoots up to 150-200 upon walking a few steps. BP is 110/70 but varies a lot, but not super low. I don't feel dizzy or have issues being upright (apart from the fatigue), but I feel out of breath if I walk.
- Last bout of exacerbation of symptoms was in early 2020, following an injury - perhaps vagus nerve is pinched? Not sure what to do. Also a ton of viral infections, but I think it was the injury which first led to the worsening.
- Had extreme vaginal discharge for months (very extreme), but tried a couple of probiotics for two weeks and it went away and has not returned. Interesting. I also had a sexual encounter around the time of that injury and suspect I may have contracted something, and that's when the UTIs first started.
- In general, i feel like there might be stealth infections. Should the priority to be to test for these? Is it risky to just trial antivirals without first testing? Perhaps this is a stupid question, but do many people try antivirals themselves, because they are cheap to order?
- I analysed my microbiome results with Prescription Microbiome site and the top recommendations are for some antivirals, and also an antibiotic for UTIs. Their algorithm also predicts POTS, PCOS etc for me.
- If funds are limited, which tests are best?
- ANA was positive and speckled. Vit D low, ferritin low, B12 high
- I was on PPIs in 2010-2014 and then isotretinoin in 2015
- Recently started methylation protocol and also thiamine, and a few days later, had headaches, IBS symptoms (don't usually have) and extreme muscular tension. Perhaps I was low in potassium? I stopped yesterday and today took some potassium. Perhaps it's the avenue I should explore next. In 2021 I felt great for a few months and was taking B1 (as TTFD), following some crazy months, but I also ended up in a new location, with a different climate (hot and humid). Who knows, but it's a clue.
- I have access to LDN and perhaps I should try it again, but don't have much hope for it. I tried for a week a few months ago and ended up feeling out of control and with SI, which is not usual for me, but could have been unrelated
- My thoughts are - methylation, something to do with injury (also have a pelvic twist and severe neck pain since the injury, and feel that there must be a correlation to the dysautonomia, but what is best to for now?), stealth infections, hormones. Where to start in the most cost effective way? I'm in the UK.
- I would like to be able to work (I have my own business - but haven't worked in a long time) and then earn enough money to pay for other tests and therapies.
- I changed my diet to low carb (but not keto - tried that last year) AIP and don't get extreme food reactions now, but don't feel like energy baseline is higher...although it hasn't been long. Perhaps I'm impatient.
- Tried an H1 histamine and not much difference.
- Lately, rather than always feeling somewhat unwell, I have days of feeling really great, followed by days of feeling horrific. Either I have days of feeling great, then start working and get so activated in the evening that I can't calm down and sleep (sometimes feel euphoric, sometimes stressed, but always feel "cured"), so the lack of sleep impacts me the following day, or I feel pretty okay (but still housebound) and then during ovulation and before period feel like I am dying - I don't think it's just PEM of regular fatigue and symptoms, but usually a poisoned feeling and that something is very wrong, usually have the UTI then, low grade fever or feeling feverish but no fever, higher pulse, etc. May also be oxalate dumping around that time?
- I recently got a vagus nerve stimulator (Amofit S+) and used it for a minute here and there, but not sure. Those days also coincided with headaches, tension, anxiety, but it's when I was taking the B1..Electrolytes help a bit and just ordered some compression wear to see if it helps. I always feel much better when immersed in water. Another point is that my eye tracking difficulties worsen with PEM and it's harder to read and strabismus looks worse. I started postural restoration (with PSI) a couple of times following my injury and they mentioned eye tracking - it all seems like it must be related. Other points that I just remembered are that I had a radiofrequency procedure done on my face years ago and had severe PEM. A massage caused severe, severe PEM and excruciating back pain. I wore an Apple watch for a few months a couple of years ago and it burned my flesh - I have a big indent in my wrist now, and it's not just the top layer of skin that was burned. I suppose I am sensitive to EMFs, which makes me cautious about Amofit and other devices..
Regarding the injury again - I read some recovery stories involving pinched vagus nerve (my shortness of breath started after the fall/injury), jaw alignments and treating craniocervical instability, so..
I also had a strange swollen underarm area (not really lymph node - but did have that for a year when I had the high EBV titres ages ago) when this started in 2020. Perhaps I need to try gentle lymphatic work..
If anyone has any ideas on what might be best to focus on first, it would be much appreciated! Thanks so much.
I'm curious about what might be considered safer bets, without a big risk of making things worse. Obviously, everyone will be different, but still..
Some random points:
- I experienced a couple remissions previously, and episodes with mild, but I tried 100s of therapies and supplements, so have no idea what did it, unfortunately. Now I am trying a more systematic approach.
- I first experienced gastritis when I was 14 (now 35) and many symptoms started then. I also had a microbiome test recently, which revealed all sorts of gut dysbiosis.
- OAT in 2020 revealed high oxalates, high tartaric acid, high uric acid and slightly impaired mito. I am worse since then, though.
- I know that I had mono in 2007 and was then diagnosed with fibro. EBV titres were high in 2009 and IgM was also high, but that's all I know. Also had tonsillitis and recurring cold sores (herpes simplex) since age 2. My last bout of me/cfs also started with a cold sore. I was born preterm and had many complications from birth, was not breast fed, etc - makes me wonder further about my microbiome.
- I started to experience severe PMDD in 2017 and that's when things really went downhill. At the time, my symptoms were mostly emotional (but extreme) during luteal phase, and in 2018 my ex partner and I both started to experience hundreds of other symptoms at the time (I suspected mold or Lyme. Maybe mold, and when we moved, we did improve significantly).
- I think that methylation protocols always exacerbated symptoms, but perhaps it's an indicator that it's an avenue I need to pursue and just take it slow. Methylation tests did reveal issues, and also low copper and ceruloplasmin.
- Nowadays, my symptoms are 100x worse during ovulation and then luteal phase. During ovulation itself I feel very anxious and get insomnia, and then crash for a few days. Then I feel a bit better again (not great, but more functional), and then for 7 days before my period I cannot function at all - extreme fatigue, extreme reactions to food (esp histamine), air hunger, anxiety, insomnia. I also have UTIs before my period, every single time. I took DIM and calcium d-glucarate on a whim a few years ago, and it helped, but back then I had clear symptoms of high estrogen, including breast tenderness and acne. It helped and also helped to lose weight. I was also diagnosed with PCOS in 2006 and was on Yaz birth control and then spironolactone. Perhaps this is what caused the earlier "remissions". I am tempted to try progesterone oil, but am not sure. This is where the dilemma comes in..
- I have limited funds, but may be able to afford one or two tests, depending on the tests. I don't know whether to have a Dutch cycle mapping test, to see what's happening with hormones, since it's a huge part of things for me. I feel completely normal and my best when my period starts. On the other hand, there must be a deeper root cause to the hormonal issues.
- Not diagnosed with POTS (not had the test), but my heart rate shoots up to 150-200 upon walking a few steps. BP is 110/70 but varies a lot, but not super low. I don't feel dizzy or have issues being upright (apart from the fatigue), but I feel out of breath if I walk.
- Last bout of exacerbation of symptoms was in early 2020, following an injury - perhaps vagus nerve is pinched? Not sure what to do. Also a ton of viral infections, but I think it was the injury which first led to the worsening.
- Had extreme vaginal discharge for months (very extreme), but tried a couple of probiotics for two weeks and it went away and has not returned. Interesting. I also had a sexual encounter around the time of that injury and suspect I may have contracted something, and that's when the UTIs first started.
- In general, i feel like there might be stealth infections. Should the priority to be to test for these? Is it risky to just trial antivirals without first testing? Perhaps this is a stupid question, but do many people try antivirals themselves, because they are cheap to order?
- I analysed my microbiome results with Prescription Microbiome site and the top recommendations are for some antivirals, and also an antibiotic for UTIs. Their algorithm also predicts POTS, PCOS etc for me.
- If funds are limited, which tests are best?
- ANA was positive and speckled. Vit D low, ferritin low, B12 high
- I was on PPIs in 2010-2014 and then isotretinoin in 2015
- Recently started methylation protocol and also thiamine, and a few days later, had headaches, IBS symptoms (don't usually have) and extreme muscular tension. Perhaps I was low in potassium? I stopped yesterday and today took some potassium. Perhaps it's the avenue I should explore next. In 2021 I felt great for a few months and was taking B1 (as TTFD), following some crazy months, but I also ended up in a new location, with a different climate (hot and humid). Who knows, but it's a clue.
- I have access to LDN and perhaps I should try it again, but don't have much hope for it. I tried for a week a few months ago and ended up feeling out of control and with SI, which is not usual for me, but could have been unrelated
- My thoughts are - methylation, something to do with injury (also have a pelvic twist and severe neck pain since the injury, and feel that there must be a correlation to the dysautonomia, but what is best to for now?), stealth infections, hormones. Where to start in the most cost effective way? I'm in the UK.
- I would like to be able to work (I have my own business - but haven't worked in a long time) and then earn enough money to pay for other tests and therapies.
- I changed my diet to low carb (but not keto - tried that last year) AIP and don't get extreme food reactions now, but don't feel like energy baseline is higher...although it hasn't been long. Perhaps I'm impatient.
- Tried an H1 histamine and not much difference.
- Lately, rather than always feeling somewhat unwell, I have days of feeling really great, followed by days of feeling horrific. Either I have days of feeling great, then start working and get so activated in the evening that I can't calm down and sleep (sometimes feel euphoric, sometimes stressed, but always feel "cured"), so the lack of sleep impacts me the following day, or I feel pretty okay (but still housebound) and then during ovulation and before period feel like I am dying - I don't think it's just PEM of regular fatigue and symptoms, but usually a poisoned feeling and that something is very wrong, usually have the UTI then, low grade fever or feeling feverish but no fever, higher pulse, etc. May also be oxalate dumping around that time?
- I recently got a vagus nerve stimulator (Amofit S+) and used it for a minute here and there, but not sure. Those days also coincided with headaches, tension, anxiety, but it's when I was taking the B1..Electrolytes help a bit and just ordered some compression wear to see if it helps. I always feel much better when immersed in water. Another point is that my eye tracking difficulties worsen with PEM and it's harder to read and strabismus looks worse. I started postural restoration (with PSI) a couple of times following my injury and they mentioned eye tracking - it all seems like it must be related. Other points that I just remembered are that I had a radiofrequency procedure done on my face years ago and had severe PEM. A massage caused severe, severe PEM and excruciating back pain. I wore an Apple watch for a few months a couple of years ago and it burned my flesh - I have a big indent in my wrist now, and it's not just the top layer of skin that was burned. I suppose I am sensitive to EMFs, which makes me cautious about Amofit and other devices..
Regarding the injury again - I read some recovery stories involving pinched vagus nerve (my shortness of breath started after the fall/injury), jaw alignments and treating craniocervical instability, so..
I also had a strange swollen underarm area (not really lymph node - but did have that for a year when I had the high EBV titres ages ago) when this started in 2020. Perhaps I need to try gentle lymphatic work..
If anyone has any ideas on what might be best to focus on first, it would be much appreciated! Thanks so much.
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