Letter From Linda

I recently received the following letter from Linda Larson, a friend who volunteered for the Connaught Lyme vaccine trials. Details of the serious adverse affects Linda experienced from the vaccine were included in the October 1998 issue of our newsletter. Learning of the Vaccine Adverse Event Reporting System (VAERS), created by the FDA and CDC to receive reports about adverse events which may be associated with vaccines, we sent forms from the agency to any Lyme vaccine trial volunteers we had contact with who had adverse reactions. Asking Linda if we could print her letter to update our readers on her progress, she generously agreed, but informed me that a postscript would have to be added due to recent developments.

Dear Sharon,

I filled out the form for VAERS last week, and this week I received a phone call from a nurse who works for this agency. She asked several questions in addition to the questions on the form. She also said she is going to write to Dr. Molloy to get the lot numbers of the 2 vaccine injections I received.

Ironically, I received a card from Dr. Molloy's office instructing me to call his office to schedule an appointment for the 3rd injection. I thought he got the message that I had no intention of getting the 3rd shot. Well, I have no intention of calling his office. I told the nurse at VAERS this and she wasn't surprised. She was very nice. She asked me to request that the office notes from my rheumatologist from the time of the injections through the end of the year be sent to her attention. Her questions were very thorough. I was impressed.

I so appreciate your sending me this form to fill out. I also asked my rheumatoligist to fill out the form too. I told him that since Connaught didn't have the courtesy to respond to my two letters, I had to pursue the problems I had with this vaccine with an agency that listens to the problems and does the research to investigate the problems. It will be interesting to see if I get any follow up once they receive my medical record from Dr. Partridge and the lot information from Dr. Molloy.

For the past few months, I have been getting progressively worse. Last week I realized that I was in serious trouble and went on the Doxycycline again to get the many symptoms to subside. I honestly felt that I was dying, and if I didn't have so much to live for, I would have preferred to have died. For the past week and a half I have basically done nothing. Now I am starting slowly to pick up the pace a bit. Today I took a walk on the beach. It  was such a luxury to have the energy to walk, listen to the waves, throw stones into the ocean, and at the end of the walk, to just sit on the beach for a little while. Of course, I had to take a nap when I got home, but last week I couldn't have even walked onto the beach. So, I will stay on the Doxy for 2-3 months, go off it for a while, then go back on it to prevent a major set back. I don't like taking an antibiotic. It makes me feel so queasy and I don't like what it does to my liver, etc., but the alternative of constantly living in a major crash mode is worse than having a stomach ache. Gosh, I hope they are making progress with a proven cure for this disease! It sure is destructive. Every year the disease process leaves less of me surviving.

Well, I didn't mean to type this much. Now that I have my brother's old computer, it is much easier to communicate. Hand writing letters was becoming too difficult so this old machine is a real blessing. Because of the cognitive damage, I am unable to read the books I have on computers, so at this point, all I can do is write letters and print them out. But this alone is a luxury.

I'll keep you posted if and when I have any follow up from VAERS. Thank you again for this source.

 

Postscript: The wonderful nurse from VAERS called me after she spoke with the doctor who is running the study in which I participated through his practice. The nurse didn't realize that the vaccine I received has not yet been approved. When he made her aware of this, she called me back and said that VAERS can only investigate vaccines which have been approved by the FDA. So, if I had the Smith Kline vaccine, she would have investigated my complaint. But I do want to say that she was very attentive and very thorough in her work until she had to stop. I was very impressed with the purpose and goal of this organization and I would strongly recommend anyone who has had an adverse reaction to the Smith Kline Lyme vaccine to fill out the VAERS form and send it in. VAERS is a good organization and people should use it when there are problems. If enough people register their adverse reactions, VAERS should react accordingly.


For more information on Lyme disease see: Lots Of Links On Lyme Disease

Last updated on 29 December 2000 by
Art Doherty
Lompoc, California
doherty@utech.net

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