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I could use your thoughts here...
My symptoms are:
- Joint/connective tissue "weakness" i.e. not too stable/firm, liable to injure.
- GERD (from possible weak esophageal sphincter, confirmed by gastroenterologist)
- Stretchy /easily bruised skin, but only in certain areas, like my biceps. In areas where skin is wrinkly/stretchy, wounds/scratches heal very slowly. Weird how this skin manifestation is localized, and took awhile to spread to certain regions.
- Skin is also pale/translucent in color, "pallor" is probably the right word to describe it. It's almost like there's a lack of blood flow to my skin now.
- Heart palpitations, probably from vagus nerve irritation due to the GERD
- Pretty bad brain fog
- Agitation / physical anxiety
- Hemorrhoids
- Muscles are "soft" and "floppy"
- Loss of muscle, muscular strength and fat around extremities, especially calves, forearms, and neck. I get neck pain, knee pain, lower back pain now.
- This may be TMI but the wrinkly skin has spread to my male, um, reproductive organ, and the problems with wound healing have showed up there as well - I'm now getting the beginning of pain and malformation in the area (not sure I have full blown Peyronie's, which FYI is a connective tissue disorder, but it's the start of it - confirmed by a urologist).
Other factors:
- I'm in my early thirties, and this all started abruptly 4-5 years ago - completely healthy with 0 issues before then.
- Things get better when I take a combo of antibiotics (including doxycycline), only to slowly return to how they were
- I don't get fatigue really as a symptom, but the other symptoms overlap a lot with some of the symptoms ME/CFS patients deal with.
- No inflammatory markers or positive lab tests though I've been tested for everything
Possible explanations:
- EDS: But wtf, I was fine before, I didn't even know you could get 'acquired' EDS. I barely fit the beighton criteria, so I'm not a slam dunk EDS case.
- Gut dysbiosis - maybe multiple rounds of antibiotics caused a dysbiosis that is causing low-grade inflammation which leads to tissue destruction and malabsorption, leading to multi-system symptom manifestation
- A bacterial infection like bartonella which in a few case studies is known to cause EDS-like syndromes that resolve with treatment
- My body's immune system is malfunctioning leading to perhaps reactions to normal viruses like CMV and EBV.
Any ideas of what the heck to do next?? I'm thinking of trying a fecal transplant or getting back on antibiotics. I could get tested for EDS but not sure how much that Invita panel costs. I have some really far out there possibilities like mold, jaw cavitations, and things like that that I'm looking into.
My symptoms are:
- Joint/connective tissue "weakness" i.e. not too stable/firm, liable to injure.
- GERD (from possible weak esophageal sphincter, confirmed by gastroenterologist)
- Stretchy /easily bruised skin, but only in certain areas, like my biceps. In areas where skin is wrinkly/stretchy, wounds/scratches heal very slowly. Weird how this skin manifestation is localized, and took awhile to spread to certain regions.
- Skin is also pale/translucent in color, "pallor" is probably the right word to describe it. It's almost like there's a lack of blood flow to my skin now.
- Heart palpitations, probably from vagus nerve irritation due to the GERD
- Pretty bad brain fog
- Agitation / physical anxiety
- Hemorrhoids
- Muscles are "soft" and "floppy"
- Loss of muscle, muscular strength and fat around extremities, especially calves, forearms, and neck. I get neck pain, knee pain, lower back pain now.
- This may be TMI but the wrinkly skin has spread to my male, um, reproductive organ, and the problems with wound healing have showed up there as well - I'm now getting the beginning of pain and malformation in the area (not sure I have full blown Peyronie's, which FYI is a connective tissue disorder, but it's the start of it - confirmed by a urologist).
Other factors:
- I'm in my early thirties, and this all started abruptly 4-5 years ago - completely healthy with 0 issues before then.
- Things get better when I take a combo of antibiotics (including doxycycline), only to slowly return to how they were
- I don't get fatigue really as a symptom, but the other symptoms overlap a lot with some of the symptoms ME/CFS patients deal with.
- No inflammatory markers or positive lab tests though I've been tested for everything
Possible explanations:
- EDS: But wtf, I was fine before, I didn't even know you could get 'acquired' EDS. I barely fit the beighton criteria, so I'm not a slam dunk EDS case.
- Gut dysbiosis - maybe multiple rounds of antibiotics caused a dysbiosis that is causing low-grade inflammation which leads to tissue destruction and malabsorption, leading to multi-system symptom manifestation
- A bacterial infection like bartonella which in a few case studies is known to cause EDS-like syndromes that resolve with treatment
- My body's immune system is malfunctioning leading to perhaps reactions to normal viruses like CMV and EBV.
Any ideas of what the heck to do next?? I'm thinking of trying a fecal transplant or getting back on antibiotics. I could get tested for EDS but not sure how much that Invita panel costs. I have some really far out there possibilities like mold, jaw cavitations, and things like that that I'm looking into.
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