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Ginger's Story

Hello to everyone. Last week Pat sent us an article from NY Newsday [11/12/] that ended with this statement by the patient's physician: "I feel it is nothing short of criminal to stop such therapy until the patient has reached maximum benefits." The company denied the treatment.

I read that last paragraph over & wondered if it was true.......that a Doctor would really make a statement like this? I mean it implies that the Doctor was actually refusing to continue treatment that he himself claimed was criminal to stop. I wrote to Pat and asked her why didn't he continue anyway......without's been done before.......& she wrote back saying: "Good Question." I agree.......something to stop and think about.

In that same e-mail, Pat also told me that some people were saying there was too much gloom & doom in the Newsletter & asked, would I like to write about my experience which she termed "a success story." I said I was reluctant because what "worked" for me, might be harmful to someone else. And anyway.......I'm not even sure, with all the instances of misdiagnoses, if I even had/have Lyme. I do know that I was most certainly bitten by tiny ticks that were on a stray dog a friend & I rescued.

We knew enough about Lyme to have the ticks tested & they were indeed Deer Ticks. The next day, I went to a Doctor to be tested, who ironically told me his own wife had contracted Lyme. He said he felt there was no sense wasting time on tests that were inaccurate a good part of the time anyway, & gave me a prescription for Doxycycline, with instructions to get it filled immediately & to be sure to take it all........again, he stressed the importance of following his instructions because, as he said, "Lyme is a nasty disease & nothing to fool around with." Unfortunately.......I didn't know there was a long incubation period for Lyme.

I was in the process of know......busy, busy, I forgot to get it filled & when I remembered a week or so later, I thought.....'hey....I'm symptoms......guess I lucked out' & I threw the prescription away. I did have one symptom, the rash......but at the time I had no idea it was connected with Lyme. When over a year later I started feeling sick & went to Doctors who gave me several different opinions as to what was the cause........I started searching for answers on line. None of the Doctors mentioned Lyme & I admit I'd totally forgotten the incident with the ticks.

Then one day I clicked a link that took me to a page with pictures of the Lyme rash & my heart jumped up in my throat! They were identical to the rash I still had, which in fact had spread. The Doctor who told me his wife had Lyme, had long since retired. So I started searching......not for Doctors, but for people.....other people who had Lyme......I figured before I went back to any Doctor I'd find out as much as I could about this disease.......which I now had a number of symptoms of.

As you can guess, there was no shortage of those with Lyme......and I was amazed & so grateful for their kindness & willingness to try and help. I said once to Pat & Jim......"As bad as this disease is, it seems like it only strikes especially nice, caring people." And I still think that's so. However, in addition to being extra nice, there was another thing that kept coming up in my research that many of the Lyme sufferers had in common.....and it was something very puzzling, at least at first.

The more I listened, the more it became clear that the people with the best Health Coverage were the ones who suffered the most, had the most severe symptoms, and had been sick the longest. The type of coverage that pays for anything a Doctor questions asked. Also, too often I heard the statement: "When I finally found a Doctor who would "listen" and who didn't think I was was such a relief!" .........or something to that effect, & this bothered me......made me think.....humm, anyone can be sympathetic........but are you cured?

So based on those findings, I decided to stay away from doctors........period. No, I didn't seek alternative methods......I was too exhausted & sick to do much of anything. So ................I did nothing.......nothing at all. All I can tell you is, gradually......and I do mean VERY GRADUALLY......I got better........not 100%, but close enough so that at least for me......I believe it was the best thing I could have done.

I'm not advising anyone to stay away from treatments, but I do think it's a good idea to listen and learn from the experiences of others.......that's all I did....and it worked for me. And oh, by the case any of you Animal Lovers are wondering about the dog......he's very old now but he's still with my friend......and doing fine.

Ginger Talasco

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