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Lyme Disease Message Board

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I am new as well, but I will share my story and what I know.

For a couple years I had noticed that my body just didn't seem the same. I was ALWAYS tired, everything ached and I attributed it to work, stress and getting older. By the way, I am a 38 year old female. However, during a 6-9 month time frame my symptoms became escalated and a little frightening at times. First, I noticed obvious arthritis in my hands, then my right elbow hurt horribly and I could barely pick things up, then my right knee swelled up and it became difficult to walk, then my thumb joint started to get bigger and it was difficult to write or grab things, then it migrated to my left side, then my shoulders, my back, etc. You get the picture. I let all of this go untreated and didn't see a doctor. I've only been to the doctor a handful of times and generally for routine exams. However, one day at work I suddenly blacked out, became dizzy and started having neurological issues. Blurred vision, numbness in my face, lack of memory/focus and felt like I was walking around drunk 24/7. I saw the doctor. Many actually. My blood work was fine. Nothing was wrong with me. Says the ear, nose and throat doctor, the orthopedic doctor, and two general medicine doctors. Then the neurologist told me I had fibromyalgia. I insisted to all of them from day one that I thought I had Lyme. Yes, I was tested. Three times. All negative. I had been doing my own research because none of them seem to care and I became aware that the testing done is inaccurate. The Elysa test is about 30-40% accurate at best. Before I had my scheduled MRI and swallowed that I had fibromyalgia I insisted on the Western Blot test. At first they played dumb and denied such a test. And I couldn't possibly have Lyme because I don't ever recall a rash or a tick. They finally gave me the test. I got a LETTER in the mail stating I was positive for Lyme and other co-infections. After this I cut all contact with my local medical establishment. Unfortunately, I still have to pay all of them for the worthless appointments, but luckily I got in with a specialist a 1/2 hour away.

I am in month 2 of extreme antibiotics. I have a regimin that also includes probiotics, supplements and vitamins. I was warned it would go backwards before it goes forward because the bacteria likes to hide and it's a bigger battle if you've had it awhile.

I try to remain positive. I get sick a lot. Whether it's the meds or the Lyme, something is trying to do something in my body. I am a positive and an optimistic person so I am thankful for the good days I have. I have monthly check ups and if this doesn't work, next is the intravenous IV.

Sadly, I also wanted to add that I live in an area in Minnesota that is prominent for Lyme, but all the doctors are ignorant and the CDC guidelines are out of whack.

Whoever reads this I feel your pain and wish you the best!

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