Hi to all,
I have MS and have been treating it because I found it's an infection. Yes, I have Lyme Disease.
My story is about my neighbor who has CFS. and Fibro, and IBS.
It' also about Lyme Disease.
I am not posting to start trouble or controversy; just sharing this woman's story for anyone who is venturing into reading outside the conventional box regarding these illnesses.
Please ignore this if you're not interested.
I will be as brief as possible.
I live in a suburb, an older neighborhood, and have new neighbors behind me. Our yards meet in the back and thankfully my new neighbors have begun the "clean-up" of the woodsy type areas that only I noticed....well, as luck would have it this spring, I was the neighbor NOT doing my part to keep the ivy and other incontrollable weeds from taking over!
I saw my one neighbor apologized for this and told her I have Lyme Disease and crawling into this mass of "stuff" wasn't going to happen. She asked me if I am fatigued because of the MS and I mentioned I was getting better, but yes, fatigue has been my constant friend my entire young life!
She then told me about her: how she had to stop teaching, and doesn't function as a complete person anymore. She has been to 25-30 different docs and is told she has CFS, Fibro, IBS, and the majority say a lot of her symptoms are in her head! She went through sleep apnea docs, slept with the machines, had a doc make a device for her head, neck, spent thousands of dollars over the years,,,,and still is suffering daily.
I mentioned going to a doc who specializes in Lyme Disease...she said she had a lyme test, an ELISA a few years ago (she gardens) and tested negative.
I explained that most of us do test negative: and yet most of us are underdiagnosed!
She did go to a LLMD, was tested and tested POSITIVE,,,,
Her new doctor told her she will get better.
She now is a statistic: WOW, I didn't test CDC positive. I tested negative (with bands positive).
She's angry, she's sad; she wonders how could all these doctors have missed this?
She's considering calling our local newspaper, and telling her story.
She is most upset about these specialists through the years telling her it's in her head! Telling her she's depressed. She threw out all her meds with Steroids, doctor’s orders. And she intends to throw out all her anti-depressants!
The day before going for her test results, her best friend told her; you don't have lyme,,,,you already were tested. A lot of "why" you feel so bad is because you are depressed!
She is looking forward to speaking to her friend with her CDC test results in hand!
So, why this post? If anyone has been tested for lyme,,,in the conventional way; perhaps you too will re think finding a doctor who understands this bacteria and all the co-infections that go with it; and give yourself another chance to get an answer.
Wishing you all health,
tory from the lyme board