posted
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?
-------------------- Nineteen years without treatment. Cranky and miserable, but ready to start IV antibiotic therapy. Please pray for me, as I am very sick. Posts: 15 | From Boothwyn, Delaware Co. PA | Registered: Mar 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
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
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
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
Posts: 287 | From Northern California, USA | Registered: Oct 2000
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am glad that you finally have gotten a diagnosis.
You will get better..
I am sending you healing thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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