23rd September 2004
[ pic removed ]
here's the story:
I have been chronically ill for ten years, diagnosed with Hepatitis C (liver biopsy came out great, liver functions normal) CFIDS, had lyme disease in 95, had back and neck injuries, autonomic dysfunction, etc, etc, never really getting any good answers or treatment.
in july i became severely ill. it started with a fever and headache, stiff neck, nausea. ER gave me pain meds, said it was viral sent me home. i had double vision, which they thought was from the phenergan. a week later, severe edema and red rash, back to ER, they did a spinal tap, said it must be viral, sent me home. got a spinal fluid leak, severe headache, went to the ER, they sent me home again, couldnt do the blood block because of the hepC (not a good idea). a week later went in again, was admitted with congestive heart failure and pleuropericarditis, was in 5 days, went home again. I am better except for severe headache that begins at the base of my skull and radiates upward to eyes and ears (ears have been clogged since about june) and down my neck to upper back and shoulders. I have had this pain for two months now, since the beginning of the severe illness in july.
the doctor suggested physical therapy, and I went yesterday for the eval and the PT noticed this erythema on my neck. she sent me back across the hall to my dr, and said I better get that checked, it could be something that is causing my pain there. my dr wasnt there, I saw her partner who said it was "nothing" and wouldnt give me anymore pain meds either. she sent me for a cervial spine MRI (I just had one of the brain a few weeks ago) so I go get that tomorrow.
I have been to several specialists, one of the best lyme disease specialists in the state. the specialists in the hospital (cardio and infectious) both thought I had lupus, they never did find out what virus I had.
I am getting very frustrated and none of the doctors seem to be able to help me. I have good insurance and I can go to anyone I want without a referral, but I dont even know if this is infectious, autoimmune, cancer, arthritis from the old injury, or something else. Even If I make an appointment with someone its going to take weeks or maybe a month to get an appointment. I dont know what to do. If I run out of pain meds, i will have to go to the ER. But I figure they will just send me home with pain meds again. anyone have any advice?
I also want to add:
they tested me for coxkasie, west nile, lyme disease, and others. no bacteria in the CSF. orkin found black widow spiders in our house, so it could have been a spider bite. we also did mold removal in our house the weekend before I got sick (took all the precautions, bunny suit, ventilation, respirator, etc.) and a few months before I got sick I had growths biopsied for skin cancer which came out suspicious (dysplastic nevi?) and had swollen lymph nodes in my armpits following the original biopsy and the wider margin one, which went away with antibiotic. I was on the second round of antibiotic when I got the illness.
here's the story:
I have been chronically ill for ten years, diagnosed with Hepatitis C (liver biopsy came out great, liver functions normal) CFIDS, had lyme disease in 95, had back and neck injuries, autonomic dysfunction, etc, etc, never really getting any good answers or treatment.
in july i became severely ill. it started with a fever and headache, stiff neck, nausea. ER gave me pain meds, said it was viral sent me home. i had double vision, which they thought was from the phenergan. a week later, severe edema and red rash, back to ER, they did a spinal tap, said it must be viral, sent me home. got a spinal fluid leak, severe headache, went to the ER, they sent me home again, couldnt do the blood block because of the hepC (not a good idea). a week later went in again, was admitted with congestive heart failure and pleuropericarditis, was in 5 days, went home again. I am better except for severe headache that begins at the base of my skull and radiates upward to eyes and ears (ears have been clogged since about june) and down my neck to upper back and shoulders. I have had this pain for two months now, since the beginning of the severe illness in july.
the doctor suggested physical therapy, and I went yesterday for the eval and the PT noticed this erythema on my neck. she sent me back across the hall to my dr, and said I better get that checked, it could be something that is causing my pain there. my dr wasnt there, I saw her partner who said it was "nothing" and wouldnt give me anymore pain meds either. she sent me for a cervial spine MRI (I just had one of the brain a few weeks ago) so I go get that tomorrow.
I have been to several specialists, one of the best lyme disease specialists in the state. the specialists in the hospital (cardio and infectious) both thought I had lupus, they never did find out what virus I had.
I am getting very frustrated and none of the doctors seem to be able to help me. I have good insurance and I can go to anyone I want without a referral, but I dont even know if this is infectious, autoimmune, cancer, arthritis from the old injury, or something else. Even If I make an appointment with someone its going to take weeks or maybe a month to get an appointment. I dont know what to do. If I run out of pain meds, i will have to go to the ER. But I figure they will just send me home with pain meds again. anyone have any advice?
I also want to add:
they tested me for coxkasie, west nile, lyme disease, and others. no bacteria in the CSF. orkin found black widow spiders in our house, so it could have been a spider bite. we also did mold removal in our house the weekend before I got sick (took all the precautions, bunny suit, ventilation, respirator, etc.) and a few months before I got sick I had growths biopsied for skin cancer which came out suspicious (dysplastic nevi?) and had swollen lymph nodes in my armpits following the original biopsy and the wider margin one, which went away with antibiotic. I was on the second round of antibiotic when I got the illness.