Hi there,
I really need some advice/help. I'm in big trouble. I'll try to keep it short. Had chronic fatigue for years, 10+ hours of sleep everyday, tired all day long, difficulty concentrating, memory problems, sugar cravings, joint stiffness, digestive issues, stomach bloating, tired after eating, sensitive to alcohol.
Prior to this was on years of antibiotics (minocycline, tetracycline, amoxycillin) to treat acne. Rounds and rounds of antibiotics given by doctors who didn't know what they were doing.
Naturopath concluded I had a problem with candida. Went on diflucan. Saw improvement in aches and pains, but fatigue and other issues were still there. But, did see improvement. I could not get off the diflucan. If I went off the diflucan the symptoms would come right back. Stayed on diflucan for several months.
Another naturopath said my problems were related to digestion and I should try betaine hcl. This is when the problems went from mild to down right dehibilitating. For the first 10 days on betaine I felt great. Felt like I was 18 again. Energy was up, concentration was good, didn't need as much sleep, cravings were gone.
But then something went terribly wrong. I developed stomach pain and started losing weight. I didn't realize it at the time but I went from 135 to 120lbs. over one month time. I developed all kinds of pain. Nerve pain, stinging pain that would come and go, pain in the stomach, my muscles started twitching all the time, muscle pain, joint stiffness, joint cracking. I was in bed for many months. It has been very scary.
The drs found inflamed abdominal lymph nodes, occasional hypercalcemia, abnormal emgs suggesting nerve irritatation, elevated csf protein suggesting an inflammatory process. I saw neurologists, endocrinologists, rheumatologists, gastroenterologists. I had all the work ups. They don't know what wrong with me.
My current situation is: I have lost most of my body fat, arms, legs, hands, feet, it's like a generalized lipodystrophy. I cannot tolerate vitamin d. 400 IUs of vitamin d cause me to have body pains and blurry vision. Vitamin d causes my egfr numbers to go down slightly, my uric acid to go up, my BUN to go down. That to me sounds like kidney problems. But, I can get vitamin d from the sun and don't get these symptoms.
My joints ache, I have nerve compression problems from fat loss, I have lost much of my fat padding (didn't even know I had this until it was gone), I have what looks like glossitis on my tongue, like papillae atrophy, and vertical grooves on the sides of my tongue.
I've lost fat. I cannot tolerate eating fat, good fats, bad fats, fish oil, cod liver oil, olive oil etc. It makes me sick. Vitamin d is fat soluble, there has to be some connection here. Dr had me try flagyl. The next day my whole body was in pain, could not continue it. I'm losing 6g/fat a day in stool, GI says its fine cause it's in range. My testosterone is low, but endocrine says this is secondary, there's something else going on. I'm developing osteopenia in the spine, the discs in my neck are degenerating. It's a disaster. My muscles continue to twitch and I cannot find a pattern or trigger. They have ruled out ALS and MS by multiple neuros.
Is it an infection, the candida, kidneys, liver? I would appreciate any ideas, the doctors don't know, some say I'm crazy, and most don't really care. I need to try something.
Thanks for listening to my story.
I really need some advice/help. I'm in big trouble. I'll try to keep it short. Had chronic fatigue for years, 10+ hours of sleep everyday, tired all day long, difficulty concentrating, memory problems, sugar cravings, joint stiffness, digestive issues, stomach bloating, tired after eating, sensitive to alcohol.
Prior to this was on years of antibiotics (minocycline, tetracycline, amoxycillin) to treat acne. Rounds and rounds of antibiotics given by doctors who didn't know what they were doing.
Naturopath concluded I had a problem with candida. Went on diflucan. Saw improvement in aches and pains, but fatigue and other issues were still there. But, did see improvement. I could not get off the diflucan. If I went off the diflucan the symptoms would come right back. Stayed on diflucan for several months.
Another naturopath said my problems were related to digestion and I should try betaine hcl. This is when the problems went from mild to down right dehibilitating. For the first 10 days on betaine I felt great. Felt like I was 18 again. Energy was up, concentration was good, didn't need as much sleep, cravings were gone.
But then something went terribly wrong. I developed stomach pain and started losing weight. I didn't realize it at the time but I went from 135 to 120lbs. over one month time. I developed all kinds of pain. Nerve pain, stinging pain that would come and go, pain in the stomach, my muscles started twitching all the time, muscle pain, joint stiffness, joint cracking. I was in bed for many months. It has been very scary.
The drs found inflamed abdominal lymph nodes, occasional hypercalcemia, abnormal emgs suggesting nerve irritatation, elevated csf protein suggesting an inflammatory process. I saw neurologists, endocrinologists, rheumatologists, gastroenterologists. I had all the work ups. They don't know what wrong with me.
My current situation is: I have lost most of my body fat, arms, legs, hands, feet, it's like a generalized lipodystrophy. I cannot tolerate vitamin d. 400 IUs of vitamin d cause me to have body pains and blurry vision. Vitamin d causes my egfr numbers to go down slightly, my uric acid to go up, my BUN to go down. That to me sounds like kidney problems. But, I can get vitamin d from the sun and don't get these symptoms.
My joints ache, I have nerve compression problems from fat loss, I have lost much of my fat padding (didn't even know I had this until it was gone), I have what looks like glossitis on my tongue, like papillae atrophy, and vertical grooves on the sides of my tongue.
I've lost fat. I cannot tolerate eating fat, good fats, bad fats, fish oil, cod liver oil, olive oil etc. It makes me sick. Vitamin d is fat soluble, there has to be some connection here. Dr had me try flagyl. The next day my whole body was in pain, could not continue it. I'm losing 6g/fat a day in stool, GI says its fine cause it's in range. My testosterone is low, but endocrine says this is secondary, there's something else going on. I'm developing osteopenia in the spine, the discs in my neck are degenerating. It's a disaster. My muscles continue to twitch and I cannot find a pattern or trigger. They have ruled out ALS and MS by multiple neuros.
Is it an infection, the candida, kidneys, liver? I would appreciate any ideas, the doctors don't know, some say I'm crazy, and most don't really care. I need to try something.
Thanks for listening to my story.