The long journey of mine

It began in 1996, a perfect poster bullseye rash, was on my entire left calf. I was a Camp Counselor in Brainerd, at the time.

We had poster's all over camp, so I knew, I needed to see a doc soon.

When I was seen, the doctor told me, "because the tick is not attached, I will not diagnose Lyme disease". I then left the clinic, not knowing how my life was about to change.

A year later, I was rear-ended by a semi. I was in so much pain, a Neurologist finally found a diagnosis. She diagnosed me with Syringomyelia. ( a tear in the cord,itself) It was something that I had feared for the last 10 years. Every 3 mos. I had an MRI, every year, I had a Lumbar Puncture and every other year, I had a Mylogram.

This was not fun, the fear of a complete tear in the cord, was much worse to deal with.

My disease had, somewhat, laid dormant. I would get so many different symptom's, seperately, they did not cause much concern, and I blamed most of the symptoms on the alleged Syringomyelia.

August 2004, my entire body shut down. I thought that I was dying. I went to my new doctor. He thought that we might be looking at Hodgkin's Lymphoma, and I was to return in a week.

Upon my arrival, he stated, "I am not going to sugar coat this, we are now looking into Non-Hodgkin's Lymphoma". I was referred to an Oncologist.

I was scared. I went to the Oncologist appt., and that very day, they did a bone marrow biopsy. Nothing was found, and I was dropped again, because they didn't know what was wrong.

A month later, my sister was diagnosed with Lyme disease. As we were talking on the phone, she asked if I had remembered my bullseye rash. I had forgotten about this. She then read the LD symptom's, and I had 95% of them.

Now I had not received my LD diagnosis until November 2006. No doctor would listen to me. They never want a patient to tell them what thay think that they have!

After my multiple misdiagnosis', I finally was able to see my sister's physician. He saved my life.

This is incredibly short. There is more horror to share, but my neuro-damaged hands, can't cut it.

Thanks for listening.

Take care, all of you,

Leslie

Doctors don't understand Lyme, they don't know how to test or treat for it. You have to see a Lyme specialist, an LLMD (Lyme Literate MD), even if you have just been bitten and have the bullseye. And how are you going to get that kind of information out there in the general public?

Your story is not unlike so many here. Thank you for sharing.

Please tell me about your neuro-damaged hands. I don't hear about this symptom from many, but my own neuro-damaged hands worry me so I am curious to know if you have similar problems.

Again, welcome. This is a friendly and helpful group of people.