Severe pain lumbar puncture Lymes

I have been misdiagnosed with chronic Lymes for 25 years... I'm 29...I finally agreed to have the procedure done the 16th of February. The following day I was admitted for 7 days due to complications. Now on bedrest for the following week. The pain is out of this world.... They said there is only minor swelling and minimal spine bleeding from the recent MRI. I live in FL but I fly to Johns Hopkins for treatment. I have been treated horribly and not even called back. My physician down in FL
Said to discharge myself due to discourteous treatment. Which I'm doing. The results came back inconclusive for Lymes in my CSF. Please help I have no ifs what else to do.

I'm so very sorry for all of this, ADK!

What is it you wish to do? Get a diagnosis or just start treatment?

Is you physician in Florida a LLMD? If so, why did they send you to a known Lyme denial institution for testing?

If you do not have a LLMD yet, please email me. I have a listing of some of the LLMD's down in Florida.

Do you have somewhere to stay for another week or whatever it takes for you to be safe to fly back? I sure wouldn't want you to have complications in the middle of the trip back home.

And so that you know, it's very difficult to get a positive test result from CSF. As messed up as the blood tests are, you are more likely to get a positive from an Igenex Western Blot.

Sorry for all of the questions, but just trying to figure out what kind of help you need first - then we can go from there.

Traveler said...
I'm so very sorry for all of this, ADK!

What is it you wish to do? Get a diagnosis or just start treatment?

Is you physician in Florida a LLMD? If so, why did they send you to a known Lyme denial institution for testing?

If you do not have a LLMD yet, please email me. I have a listing of some of the LLMD's down in Florida.

Do you have somewhere to stay for another week or whatever it takes for you to be safe to fly back? I sure wouldn't want you to have complications in the middle of the trip back home.

And so that you know, it's very difficult to get a positive test result from CSF. As messed up as the blood tests are, you are more likely to get a positive from an Igenex Western Blot.

Sorry for all of the questions, but just trying to figure out what kind of help you need first - then we can go from there.

Hi,

I have been diagnosed with Lyme's. It's just I know it's in my central nervous system and I can't find a dr to help or even see me in their office, if so it goes right back to fibromyalgia or "I don't know what's wrong with you" diagnoses. I have a primary physician in FL and I'm home now. On bed rest. I will not return to Johns Hopkins. I do not have an ID Dr anymore, they frown upon Lymes and get offended when you present your own research findings. I do not have an LLMD and have yet to find one. I will email you. I have researched the high number of false results and that's why I denied all lumbar punctures requested but the hospitals down here in FL. But when I went up north last mnth I was just hoping it was the answer :(