blackscarecrow
New Member
M37
sorry for profanity if there exists,not sure.
Hey all…im running out of ideas and options so I have to try here one more time…
Ill share my story here so maybe someone has something to say about it or we find out something new
IDK when and how really everythin started but i think it may be a PPI inhibitor that caused all the crap or there really is some new unknown pathogen lurking around. So somewhere around April 2022. i started having some funny dizziness going on when standing up,but i may have had iron/ferritin issues in my body cuz i was a regular blood donor (every 3 months) but i messed myself up cuz i was living abroad and eating crap every day cuz didnt have time and will to cook for myself. And when i say crap i really mean it...low vegetable and fruit,nothing cooked, only sandwiches and frozen pizza and hotdogs...5 days a week..And that kind of "eating" i was practicing for over a year.... Anyway when all started they did find low hemoglobin levels,iron and ferritin but vitamin D and folate as well. One thing more what happened at the same time i had some funny pain spells occasionally somehwere at the left side of my low abdomen (made gastroscopy and colonoscopy and they found nothing so i got prescribed PROTON PUMP INHIBITORS) I was using this craš for maybe 3-4 months and they might caused some low acid in my belly, so that is the second assumption. So that is how it may started...The dizziness and maybe,and i say maybe some weight loss,really cant tell. The stuff really got out of control somewhere in September 2022. At this point i was noticing symptoms like occasional dizzines when standing up,hard dandruff and splinter hemorrhages on my nails and sometimes like really sudden extreme hunger,even at night...and cracking sounds in some of my joints,spine mostly when i turned around...but only a few times, i thought it was normal...occasional ear ringing too and finger tingling in my left hand sometimes but that went away soon.And sweating abnormalities...I was sweating and still do, like pig under my arms and nothing can manage this. And appetite alterations...sometimes none apetite,sometimes extreme hunger.
I donated blood at the end of August ,and it was a bit funny cuz the nurse barely found my veins...3 months prior to that i thought as well that my veins changed but i thought im halucinating. (but they did, they sunk or idk what,they arent visible anymore like they used to be) and i tend to weight myself once a month. I had 83kilos back then and 3 weeks later when i came home vomiting like never before i weighted 74 kilos. So thats 9 kilos in 3 weeks. So i went to GP where we found out low hemoglobin,ferritin,iron, vit D and folates. CRP was 25 as well. My GP thought of internal bleeding cuz of low iron levels but that was actually just cuz of frequent blood donations. So anyway we made every known image test known to human species. TRANSABDOMINAL ULTRASOUND a few times, CT with dye and MRI of abdomen, everything fine. In the meantime, my cholesterol and triglyiceride levels skyrocketed in 2 months and now im having problems with that still. As at that time i was having pshyological issues cuz of everything going on i said we should do infectious disease test too. i thought of HIV cuz i got tattoed in Ferbruary that year. OFC it came back negative,twice... so no chance of HIV there,and me and my wife are together for ages,15 years + and noone of us had any other partners. But what did came back was reactivated EBV and CMV...So we thought that is the problem (and it may still be,i havent ruled it out yet) and we made retesting a month later and came back negative viral load. So my GP ruled out infectious diseases problem from then cuz all parasitic,viral and bacterial and fungal stool and urine tests came back normal. H. Pylori and E. Coli as well. At this time i was noticing some funny symptoms like very oily skin on my forehead and my nose and on the other hand dry,wrinkly and flaky skin on my hands,and especially knees (white) and shins and crepitus in my knees when crouching and bleeding and maybe receding gums and white coated and maybe swollen tongue.
Forgot to mention,before the sudden wieght loss,after the last blood donation i had my tooth pulled out and cuz of low iron levels,my wound woudnt heal and i had a 7 day brutal pain and i was drinking ibruprofen and aspirin like tic-tacs, like 10 a day so maybe i messed up my stomach there too...
...Next step: January 2023. endocrinology..why? i thought of lipodystrophy...loss of subcutaneous fat tissue and inability to gain back weight...and stool changes (yellow fatty floating stools sometimes and sometimes "normal" but HUGE yellow sausages" (so im pretty sure there is some kind of malabsorption going on). There i started noticing some funny symptoms going on like some fibromyalgia stuff sometimes,all over my body, body hair falling and thinning everywhere, pubic hair as well,eyebrows, bloodshot eyes often, and funny red marks that sometimes appeared on my forehead which went away by themselves in a diameter not more than 1-2cm... Hormonal tests everything came back normal,thyroid and stuff. I even contacted the world leading docs in lipodystrophy like dr. Elif Oral , we even had a live video session and dr. Abhimanyu Garg and dr. Vilar from Europe. We ruled that out cuz of normal leptin and adiponectin levels i have. I still dont know if i lost muscle or subcutaneous fat. By this time ive managed to regain my weight but it seems i regained it only on my abdomen,visceral fat.So im still visiting a GI specialist and we made some really rare stuff tests like urine porfirine, histamine intolerance and came back ok. The newest finding is my fatty liver from May this year. So now ill be having liver elastography next year. I did autoimmune panel too like ANA,RF which were negative and gene test ,apparently i have HLA-B27 gene (potentional spondyloarthtopaties).
Immunologist/rheumatology specialist made immuno/electrophoresis of proteins, i have slightly elevated IGA levels and beta globulins. IgA is an antibody primarily found in mucosal areas like the respiratory and gastrointestinal tracts, as well as in saliva, tears, and breast milk. An increase in IgA levels can indicate several conditions or responses. Some common causes of elevated IgA include chronic infections, especially those of the respiratory or gastrointestinal systems, can lead to an increase in IgA as the immune system produces more antibodies to fight the infection. Celiac disease (especially in untreated cases) and multiple myeloma or other plasma cell disorders which i ruled out too cuz i went to hematologist too. Some other teste i made - chromogranin A negative PSA,CA 19-9,CEA, CYFRA all negative,calprotectin negative...anti IGA for celiacs negative.
Something is definitely interfering with absorption of nutrients i think because of signs of malabsorption and is definitely infectious because i got a son at the beginning of this trip and he has a failure to thrive,like he is 2 now still hasnt got all his teeth and hes got diarrhoea often and he doesn’t grow normally I think...And the older son who is 5 has same stools as i do,yellow,fatty and greasy. And my wife is looking very thin and had some funny symptoms like leg petechiae for a month or so and fatigue and looks as well like she lost her adipose tissue and cant get any weight back. I am desperate cuz docs think im nuts and I even joined some funny reddit groups talking about HIV negative virus called yinzibing going on causing havoc and stuff like that. I am actually really afraid not for myself, but for my family…
Possible diagnosis in my opinion - (Malnutriton ) malabsorption of fats, and fat soluble vitamins ADEK or some other malabsorption issue like some enterovirus,cosackxie B or Chronic EBV-CMV (Epstein-Barr Virus - Cytomegalovirus
Mycoplasma incognitus
Staphylococcus aureus
or something new like Yinzibing (idk if this really exists but lets say it does)
Any ideas,insights pls
sorry for profanity if there exists,not sure.
Hey all…im running out of ideas and options so I have to try here one more time…
Ill share my story here so maybe someone has something to say about it or we find out something new
IDK when and how really everythin started but i think it may be a PPI inhibitor that caused all the crap or there really is some new unknown pathogen lurking around. So somewhere around April 2022. i started having some funny dizziness going on when standing up,but i may have had iron/ferritin issues in my body cuz i was a regular blood donor (every 3 months) but i messed myself up cuz i was living abroad and eating crap every day cuz didnt have time and will to cook for myself. And when i say crap i really mean it...low vegetable and fruit,nothing cooked, only sandwiches and frozen pizza and hotdogs...5 days a week..And that kind of "eating" i was practicing for over a year.... Anyway when all started they did find low hemoglobin levels,iron and ferritin but vitamin D and folate as well. One thing more what happened at the same time i had some funny pain spells occasionally somehwere at the left side of my low abdomen (made gastroscopy and colonoscopy and they found nothing so i got prescribed PROTON PUMP INHIBITORS) I was using this craš for maybe 3-4 months and they might caused some low acid in my belly, so that is the second assumption. So that is how it may started...The dizziness and maybe,and i say maybe some weight loss,really cant tell. The stuff really got out of control somewhere in September 2022. At this point i was noticing symptoms like occasional dizzines when standing up,hard dandruff and splinter hemorrhages on my nails and sometimes like really sudden extreme hunger,even at night...and cracking sounds in some of my joints,spine mostly when i turned around...but only a few times, i thought it was normal...occasional ear ringing too and finger tingling in my left hand sometimes but that went away soon.And sweating abnormalities...I was sweating and still do, like pig under my arms and nothing can manage this. And appetite alterations...sometimes none apetite,sometimes extreme hunger.
I donated blood at the end of August ,and it was a bit funny cuz the nurse barely found my veins...3 months prior to that i thought as well that my veins changed but i thought im halucinating. (but they did, they sunk or idk what,they arent visible anymore like they used to be) and i tend to weight myself once a month. I had 83kilos back then and 3 weeks later when i came home vomiting like never before i weighted 74 kilos. So thats 9 kilos in 3 weeks. So i went to GP where we found out low hemoglobin,ferritin,iron, vit D and folates. CRP was 25 as well. My GP thought of internal bleeding cuz of low iron levels but that was actually just cuz of frequent blood donations. So anyway we made every known image test known to human species. TRANSABDOMINAL ULTRASOUND a few times, CT with dye and MRI of abdomen, everything fine. In the meantime, my cholesterol and triglyiceride levels skyrocketed in 2 months and now im having problems with that still. As at that time i was having pshyological issues cuz of everything going on i said we should do infectious disease test too. i thought of HIV cuz i got tattoed in Ferbruary that year. OFC it came back negative,twice... so no chance of HIV there,and me and my wife are together for ages,15 years + and noone of us had any other partners. But what did came back was reactivated EBV and CMV...So we thought that is the problem (and it may still be,i havent ruled it out yet) and we made retesting a month later and came back negative viral load. So my GP ruled out infectious diseases problem from then cuz all parasitic,viral and bacterial and fungal stool and urine tests came back normal. H. Pylori and E. Coli as well. At this time i was noticing some funny symptoms like very oily skin on my forehead and my nose and on the other hand dry,wrinkly and flaky skin on my hands,and especially knees (white) and shins and crepitus in my knees when crouching and bleeding and maybe receding gums and white coated and maybe swollen tongue.
Forgot to mention,before the sudden wieght loss,after the last blood donation i had my tooth pulled out and cuz of low iron levels,my wound woudnt heal and i had a 7 day brutal pain and i was drinking ibruprofen and aspirin like tic-tacs, like 10 a day so maybe i messed up my stomach there too...
...Next step: January 2023. endocrinology..why? i thought of lipodystrophy...loss of subcutaneous fat tissue and inability to gain back weight...and stool changes (yellow fatty floating stools sometimes and sometimes "normal" but HUGE yellow sausages" (so im pretty sure there is some kind of malabsorption going on). There i started noticing some funny symptoms going on like some fibromyalgia stuff sometimes,all over my body, body hair falling and thinning everywhere, pubic hair as well,eyebrows, bloodshot eyes often, and funny red marks that sometimes appeared on my forehead which went away by themselves in a diameter not more than 1-2cm... Hormonal tests everything came back normal,thyroid and stuff. I even contacted the world leading docs in lipodystrophy like dr. Elif Oral , we even had a live video session and dr. Abhimanyu Garg and dr. Vilar from Europe. We ruled that out cuz of normal leptin and adiponectin levels i have. I still dont know if i lost muscle or subcutaneous fat. By this time ive managed to regain my weight but it seems i regained it only on my abdomen,visceral fat.So im still visiting a GI specialist and we made some really rare stuff tests like urine porfirine, histamine intolerance and came back ok. The newest finding is my fatty liver from May this year. So now ill be having liver elastography next year. I did autoimmune panel too like ANA,RF which were negative and gene test ,apparently i have HLA-B27 gene (potentional spondyloarthtopaties).
Immunologist/rheumatology specialist made immuno/electrophoresis of proteins, i have slightly elevated IGA levels and beta globulins. IgA is an antibody primarily found in mucosal areas like the respiratory and gastrointestinal tracts, as well as in saliva, tears, and breast milk. An increase in IgA levels can indicate several conditions or responses. Some common causes of elevated IgA include chronic infections, especially those of the respiratory or gastrointestinal systems, can lead to an increase in IgA as the immune system produces more antibodies to fight the infection. Celiac disease (especially in untreated cases) and multiple myeloma or other plasma cell disorders which i ruled out too cuz i went to hematologist too. Some other teste i made - chromogranin A negative PSA,CA 19-9,CEA, CYFRA all negative,calprotectin negative...anti IGA for celiacs negative.
Something is definitely interfering with absorption of nutrients i think because of signs of malabsorption and is definitely infectious because i got a son at the beginning of this trip and he has a failure to thrive,like he is 2 now still hasnt got all his teeth and hes got diarrhoea often and he doesn’t grow normally I think...And the older son who is 5 has same stools as i do,yellow,fatty and greasy. And my wife is looking very thin and had some funny symptoms like leg petechiae for a month or so and fatigue and looks as well like she lost her adipose tissue and cant get any weight back. I am desperate cuz docs think im nuts and I even joined some funny reddit groups talking about HIV negative virus called yinzibing going on causing havoc and stuff like that. I am actually really afraid not for myself, but for my family…
Possible diagnosis in my opinion - (Malnutriton ) malabsorption of fats, and fat soluble vitamins ADEK or some other malabsorption issue like some enterovirus,cosackxie B or Chronic EBV-CMV (Epstein-Barr Virus - Cytomegalovirus
Mycoplasma incognitus
Staphylococcus aureus
or something new like Yinzibing (idk if this really exists but lets say it does)
Any ideas,insights pls
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
