I got bit in 1987. It's been hell for the last 19 and 3/4 years. I could NEVER find a dr. to believe me. In all that time, only about 4 drs. even saw fit to order the Western blot test, which of course came back negative.
I had every classic symptoms, starting with the bullseye rash, Bell's palsy, horrendeous and continual arthritis and many many more symptoms. We all know them, I won't bore you with all I've been through.
I finally had a brain spect scan. It said, "absent or severely reduced perfusion" and then it indicated the various lobes of my brain. The right side of my brain is most affected, hence the crushing headache and eye ache. Does anyone out there have a problem with eye pain or diminished eye sight? Is there any chance my brain will recover?
I am finally getting IV Rocephin by a great doctor who actually takes medical insurance.
To say these last almost 20 yrs., has been a lesson in frustration is an understatement. I have until May 18th and my 90 infusions will be done. Do I feel better? I did a little at first, but my neuro problems seem to be getting worse, again. Stuttering, stammering, unable to find a word, etc. I actually forgot how to tie a simple bow. I can't remember how to spell and I've forgotten all my times tables except for the 5x's. I knew I was at my lowest.
I guess I might have been in denial. Now I realize just how darn sick I am. Will I ever feel good again? Ever?
Posted by Michelle M (Member # 7200) on :
Are you seeing an LLMD? Not to say another doctor can't help you with Rocephin, but here's some things an LLMD knows: (1) Rocephin is great but you also need a cyst-busting drug; (2) there's a HUGE likelihood that you are coinfected with babesia, bartonella, etc... Things that "regular" doctors don't even think of.
Your worsening symptoms while on Rocephin are almost certainly a Herxheimer effect -- resulting from die-off of bacteria. Please bear with it and don't let it get the best of you. It's actually a GOOD thing, and there will be light at the end of the tunnel.
Keep us posted. Things are going to get much better!!
Michelle
Posted by Kendrick (Member # 10990) on :
I wish you well and glad you've gotten the help you should have always had.
Posted by Katcon (Member # 9812) on :
With treatment some lesions on the brain will go away. I have experienced this myself. In a few months get another mri to compare.
I feel for you 5 years ago I could not do 3rd grade math. It was so frustrating.
Hang in there. It will get better. It takes alot of patience.
Take any help you can get, and be good to yourself.
Like others have said it really is a good thing that you feel worse. Strange but true. Just keep telling yourself it will get better.
Come here often if you have questions or need support.
Let us know how you are making out.
Sending healing prayers your way.
Posted by Ann in CA (Member # 97) on :
Just wanted to let you know that the eye ache and headache is mostly gone for me. My spect scan showed most damage on the right side, and I was bitten and had most of my symptoms (including severe eye ache and floaters) on the left side.
I still have to use eye drops as my neuro-opthomologist said that now the dryness can cause the ache to build up before you realize, but it is quite mild compared to what it was initially before I started treatment (eight years after bite).
Just focus on getting better and don't give up if you have periods of less progress.
Best wishes.
Ann
Posted by Geneal (Member # 10375) on :
I am glad that you finally have gotten a diagnosis.