Erythema? (pic)

roro · 09-23-2004, 01:55 PM

[ 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.

roro · 09-25-2004, 06:13 PM

no replies?

I think i figured out what the redness is. i had my hair dyed a few weeks ago, maybe she didnt wash all of it off where i was leaning my neck on the thing, and its a chemical burn.

i still have the headaches and neck pain. its pretty severe. it kinda feels like the headache i had from the spinal fluid leak, but not relieved by laying down. i will try another board. thanks for viewing.

ticker · 09-25-2004, 09:49 PM

roro, I hope you check back. I am sorry you have been so sick, I know it is frustrating. From this rash and your symptoms, I really believe you have Lyme disease. It is excellent that your your therapist saw the rash. I am glad you have a photo of it, this is important documentation. You said you had Lyme in 1995. You probably did not receive long enough or aggressive enough treatment. It is also possible you may have been reinfected.

You said the illness began when you were on the second round of antibiotics. Are you familiar with the Jarisch-Herxheimer Reaction (herx)? Often when people with Lyme take antibiotics, their symptoms become worse or they may get new ones. When the antibiotics are killing the Lyme bacteria, toxins are released making them feel sicker. It is scary when it happens but it is a good sign the antibiotics are working. This may be what happend with you.

Besides Lyme, ticks can transmit several co-infections--Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It is very important to be tested for these. I do not think there was a lot of information on the co-infections back in 1995. Bartonella can cause swollen lymph nodes.

It is very important to see a knowledgeable doctor. Many doctors do not understand tickborne illnesses and treat with outdated protocols. Where do you live? What doctor did you see? Were you tested for the co-infections? Which Lyme test was done? If you tell me where you live, I will give you the name of the closest knowledgeable Lyme doctor to you that I know of. For
more information on Lyme disease, read the "Lyme Disease Information" post on the Lyme board at this site.

Hang in there okay?

roro · 09-25-2004, 11:41 PM

thanks ticker. i am in maryland, and the doctor I saw is Kennedy Walshe. He is a specialist in lyme disease. it is his opinion that the treatment I recieved when I first got it (in connecticut btw) was sufficient and that I dont have it now. i will ask him about co-infections.

ticker · 09-26-2004, 10:32 AM

roro, do you remember how long you were treated?

I recommend that you get another opinion. There is an excellent Lyme doctor in DC--Dr. Kenneth Singleton.