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Hey everyone. I'm a 28-year-old male, diagnosed with ME/CFS and dysautonomia (orthostatic hypotension) in May of this year after experiencing ME/CFS issues for the past four years due to coxackie virus and worsened symptoms due to Covid. Let's skip the entire history and simply say that my baseline in 2023 was "housebound" with occasional walks outside lasting around 15-20 minutes. Some days, I could manage small weightlifting sessions at home for 5-10 minutes, but I consistently experienced post-exertional malaise (PEM) afterward.
In May, I received the diagnosis, and starting from July, I began a regimen of Lactoferrin, weekly IV saline with vitamins C and B, along with other supplements such as magnesium bisglycinate, D, selenium, and probiotics. Based on the blood analysis conducted in May, it was revealed that I have elevated levels of IgM for HSV1, Coxsackie, and HHV6, along with elevated IgG levels for both Covid and HHV6.
My baseline usually tends to worsen in the summer due to dysautonomia, so I couldn't walk the 600-900 meter distances I managed at the beginning of 2023. Instead, I walked occasionally around 400-500 meters. However, in September, I noticed a significant improvement, mainly attributed to Lactoferrin and the weekly IV saline. During one week in September, I even managed to walk 800-900 meters again, lift weights without PEM, and felt generally better. Before that, in August, I experienced occasional slight weakness in my calves and arms, but it was minimal. In September, I felt it a few times, but it was shallow and didn't bother me much.
Toward the end of September, during what was one of my best weeks in years, I began feeling stronger muscle weakness before sleep, accompanied by chills and cold sensations. Strangely, it disappeared when I woke up, allowing me to walk some distance. However, a few days later, the muscle weakness persisted, prompting me to stop all activities for a few days. Despite this, it lingered. It's been a month and a week now and it's still there. The sensation is similar to low blood sugar, causing almost trembling arms and legs with chills. This is the first time that sometimes my arms are almost trembling when I want to type on keyboard or mobile. (it doesn't happen often, but it has never occurred before).
I've refrained from walking outside, reduced my showering, rarely play the piano now, and initiated the intake of NADH with CoQ10, B1, and lemon balm, but the condition persists. (There was only one occasion during this period when, for three consecutive days, it somehow disappeared.)
One notable observation is that in 90% of cases, the muscle weakness alleviates after I eat something (Throughout the entirety of 2023, I mostly avoided gluten, sugar and high histamine foods, maintaining a consistent dietary regimen, so I didn't change basically anything from before). Attached below, you can find my blood analysis from when this muscle weakness began (Igm's for HSV1 and Coxackie are fine now and below the limit but HHV6 is still high and above the limit).
Do you all think this is a worsening case of PEM or maybe something else which is masking as PEM? I plan to introduce the following items one by one: sodium bicarbonate (to explore if it's due to high lactic acid), creatine monohydrate, NAC, and BCAAs.
- Notable blood analysis from before:
1) I have measured my histamine levels two times and both times they were high (I am allergic only to ragweed, but I was checking it outside of the ragweed season)
2) My bilirubin is always over the limit but AST, ALT, GGT are always good (probably Gilbert sindrome)
3) I have high HHV6 Igm and Igg -> measured it two times in 2023 (once in May and once in October, both times high)
4) I measured multiple times in the past Glucose, HBA1c and Insulin levels as well as C-peptid (in may) -> always good
5) Also measured multiple times FT4, TSH, PTH, anti-Tg and anti-TPO -> good
Thank you in advance for your comments!
In May, I received the diagnosis, and starting from July, I began a regimen of Lactoferrin, weekly IV saline with vitamins C and B, along with other supplements such as magnesium bisglycinate, D, selenium, and probiotics. Based on the blood analysis conducted in May, it was revealed that I have elevated levels of IgM for HSV1, Coxsackie, and HHV6, along with elevated IgG levels for both Covid and HHV6.
My baseline usually tends to worsen in the summer due to dysautonomia, so I couldn't walk the 600-900 meter distances I managed at the beginning of 2023. Instead, I walked occasionally around 400-500 meters. However, in September, I noticed a significant improvement, mainly attributed to Lactoferrin and the weekly IV saline. During one week in September, I even managed to walk 800-900 meters again, lift weights without PEM, and felt generally better. Before that, in August, I experienced occasional slight weakness in my calves and arms, but it was minimal. In September, I felt it a few times, but it was shallow and didn't bother me much.
Toward the end of September, during what was one of my best weeks in years, I began feeling stronger muscle weakness before sleep, accompanied by chills and cold sensations. Strangely, it disappeared when I woke up, allowing me to walk some distance. However, a few days later, the muscle weakness persisted, prompting me to stop all activities for a few days. Despite this, it lingered. It's been a month and a week now and it's still there. The sensation is similar to low blood sugar, causing almost trembling arms and legs with chills. This is the first time that sometimes my arms are almost trembling when I want to type on keyboard or mobile. (it doesn't happen often, but it has never occurred before).
I've refrained from walking outside, reduced my showering, rarely play the piano now, and initiated the intake of NADH with CoQ10, B1, and lemon balm, but the condition persists. (There was only one occasion during this period when, for three consecutive days, it somehow disappeared.)
One notable observation is that in 90% of cases, the muscle weakness alleviates after I eat something (Throughout the entirety of 2023, I mostly avoided gluten, sugar and high histamine foods, maintaining a consistent dietary regimen, so I didn't change basically anything from before). Attached below, you can find my blood analysis from when this muscle weakness began (Igm's for HSV1 and Coxackie are fine now and below the limit but HHV6 is still high and above the limit).
Do you all think this is a worsening case of PEM or maybe something else which is masking as PEM? I plan to introduce the following items one by one: sodium bicarbonate (to explore if it's due to high lactic acid), creatine monohydrate, NAC, and BCAAs.
- Notable blood analysis from before:
1) I have measured my histamine levels two times and both times they were high (I am allergic only to ragweed, but I was checking it outside of the ragweed season)
2) My bilirubin is always over the limit but AST, ALT, GGT are always good (probably Gilbert sindrome)
3) I have high HHV6 Igm and Igg -> measured it two times in 2023 (once in May and once in October, both times high)
4) I measured multiple times in the past Glucose, HBA1c and Insulin levels as well as C-peptid (in may) -> always good
5) Also measured multiple times FT4, TSH, PTH, anti-Tg and anti-TPO -> good
Thank you in advance for your comments!
