I first went to my doctor 15 months ago, at the age of 33, with what was thought to be Neurological problems, falling and dropping things a lot. They did a basic CBC, thyroid, etc and then referred me to a Neurologist. The Neuro did a balance test (ENG) and an MRI of the head and neck (checking for MS). Everything was normal again. He told me there was nothing Neurologically wrong with me and sent me on my way.
Last fall, I started to really deteriorate. I had numbness and shock feelings. I could barely walk. I started having GI problems. I went through a whole mess of GI tests. I had a problem with my GI muscles but the doctor had no idea why. He thought it may be a neurological problem. He suggested I go back to the Neuro. I was not about to go to the same guy as before. I went to a new Neuro who has been wonderful. He was convinced something was wrong and promised me he would get to the bottom of it. Well he sent me for more tests and called me this morning to tell me I have Lyme's disease.
So, here's the questions I have: I had a Western Blot (?) today and am set up for a spinal tap. Anyone have any ideas why I might need a spinal tap?
Has anyone had experience with it going undiagnosed for so long? Are the neurological effects reversible?
Are you able to continue working during treatment? I have a desk job, work at the computer most of the time. (Waiting for my apt with an infectious disease dr, but assuming I will probably need IV treatment due to neurological symptoms and the length of time I have had the symptoms.)
Any insite from someone who has been there would be greatly appreciated. I have to admit, as bad as Lyme's Disease is, I was so relieved that I do not have MS or some of the degenerative neurological problems they have thought I have had along the way.
Thanks, LA
Posted by kellephant (Member # 24885) on :
most of us went years without a diagnosis. i was sick for 7 years before beginning treatment. i haven't been able to work for 2 years. there a lot of people on this site who will be able to help you. i'm glad you have a diagnosis finally now... thats the first step to getting better Posted by just don (Member # 1129) on :
just say No to the spinal tap,,,nothing good will come of it anyway. Its a way to say"see you dont have lyme,,false test!!"
Posted by Lymetoo (Member # 743) on :
You may want to post this in Medical Questions where you'll get many more responses and suggestions.
I agree with don... Say NO! to the spinal tap. They are 20% accurate in finding Lyme disease. So there's no point in having one if the dr has already dxd you with Lyme.
If it comes back negative (very likely) .. then your insurance company could use that against you and not pay for treatment.
How were you diagnosed with Lyme? (No 'S' in LYME) Did you have an ELISA test??
Unless your Western Blot was sent to Igenex lab, it is quite possible that it will come back negative. Hate to say that, but it sure might.. just want you to know that.
That won't mean you don't have Lyme, though!
Please do not waste time seeing an infectious disease doctor. Most of the time, they will NOT treat past about 4 wks. You won't be well in 4 wks.
It's a miracle that any neuro diagnosed you with Lyme! WOW!! That is impressive... but you will need an LLMD (Lyme Literate MD) in order to get well.
Go to Seeking a Doctor to locate one near you.
WELCOME!! Posted by mcg08002 (Member # 24617) on :
Hey, I am 20, and a college student. I found out I had lyme, and they made me do 2 spinal taps. Waste of time and money. Turns out it is RARE if they find any Lyme PCR in your spinal fluid. I had a horrible spinal headache and had to get a blood patch (Which is worse than the spinal) stop fluid leaking from my hole.
Dont do the spinal, I wish I hadn;t. I was so torn with doctors telling me too.
Posted by Dekrator48 (Member # 18239) on :
You should run, not walk to a LLMD, not an ID Dr. They will treat you short term and tell you that you are cured.
Then they will tell you that any remaining symptoms are not related to lyme and that you need psychiatric help.
I went undiagnosed for 21 years. Take it from those who know.
Posted by Lymetoo (Member # 743) on :
Yeah, we tried to convince Stephanie not to do it...but you know how pushy doctors can be!! ( and parents, maybe? )
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