my interview with woman who recovered

[Guest guest]

Hi all,

My thinking on a data base has changed a bit. I now think it should be done

as a co-operative, with a lot of input on the design from members (I've

already had some great suggestions from three people).

Is anyone else interested in joining? It would require a commitment to

continue periodic inputs into the data base even after you recover.

Here's a case in point.

Recently I interviewed a woman who recovered from Lyme disease. I'll change

her name, and refer to her doctor by initial, and remove identifying

characteristics, so that I can post it, below.

==================

I just spoke to Alice, who has recovered from Lyme Disease. In November,

the year of onset, she'd had close contact with a deer's carcass.

Then she got the flu. In January she got a headache that lasted 9 months.

She finally went to the hospital and they noticed that one pupil remained

fixed and dilated, and that she had numbness and tingling in her arms and

hands. They said it was due to an aneurism, and that she would die, and

that she could die either in the hospital or at home.

After further investigation they changed their minds--said they didn¹t know

what it was. She had a whole year of tests, costing thousands of dollars,

and nobody found anything. Finally she was diagnosed with MS, but the people

in the MS support group didn¹t think that¹s what she had.

She had no tick, no rash.

She was not bedridden. She limped and had a lot of joint pain. The headaches

were terrible, and she had memory problems--couldn¹t remember people¹s

names. She had problems with balance and bladder. On one sip of alcohol she

became totally drunk, and has not had a sip since.

Her blood pressure was erratic, but was usually low. She felt dizzy when she

stood up. She said her heart speeded up, pounded.

She was able to continue driving, except for a couple of times. She slept 12

hours every night and was tired during the day. She had children, no social

life, but continued to work for quite some time. Finally she quit work, and

she and her husband were planning to sell their business because she

couldn¹t work.

In 1990 she read an article in the Poughkeepsie newspaper on Lyme disease

and called a hotline. The person on the hotline said she¹d bet her life

that it was Lyme disease. The hot line person sent her to a doctor in

Poughkeepsie--Dr. F.--an infectious disease specialist. He tested her for

Lyme--she said he did two tests and she doesn¹t remember what they were but

both of them were the same test. One was positive and one was negative.

She was treated for one year. She took oral tetracycline--megadoses--for 6

months. Then IV Rocephin for 6 weeks. Then oral tetracycline again. She

said she never had any side effects from the antibiotics. She took

acidophilus.

She did have some trouble with her PICC line. Finally she went to the

hospital and they put an infant PICC line in, and that worked. It wasn¹t

latex.

The first symptom to improve was pain in her hips. Then she began to have

more energy, though she was still tired while she was on the treatments.

(She was not working then.) Her memory is o.k. now. It took a while to

recover, she said--about a year.

Two years ago she had a relapse, and went back to Dr. F. He said that he¹d

seen 8 people that week who¹d gotten sick at the same time she had, who had

relapsed. He said it was very strange, and that there was nothing more he

could do for her. However, she improved from the relapse without treatment.

She¹s now busy working at the family business (which they didn't have to

sell after she began the initial treatment) and doesn¹t go to support group

meetings. ³You lose interest once you¹ve accomplished your goal.²

Best,

Sue B.

upstate New York