Does this sound like Lyme? In 1992 had 3 small bullseye rashes under left breast. Didn't think anything of it. Never heard of Lyme. Then I developed severe eye pain with floaters. Then I developed severe hip pain. I cried for months. Six months later developed sudded muscle twitching all over my body, followed by weakness, numbness, tingling all over from head to toe. I also had fevers, severe nausea, brain fog, diarrhea, bizarre rashes and elevated liver enzymes. Saw neuro, had spinal tap and MRI of brain both normal. He said he had no idea what was wrong but that I had a "central nervous system disorder" Symptoms persisted. Heard about Lyme. Dr's told me no such thing in Ohio. I went to LLMD in PA. Tested negative. He treated me for several months with oral antibiotics. I started getting better. It took years. I have never been completely ok. I still have weird rashes and fatigue. Four months ago developed sudden leg weakness,numbness,tingling. MRI of c-spine showed bad disc. Had fusion done 8/05. A few days after surgery developed muscle twitching and numbness and tingling all over(after starting steroids).. Surgeon said not from surgery. Neuro said he "did not have a clue" what was wrong with me. Referred me to another neuro who said maybe "immune spinal cord inflammation". Does anyone have any comments. I don't know where to go next.
Posted by Lymetoo (Member # 743) on :
I'm no doctor, but it sure sounds like Lyme to me! Actually, it's screaming "LYME"!
You need to get off the steroids as soon as you can [hope you're already off]...be sure to taper per dr's instructions.
And get ON antibiotics again. Lyme disease rarely shows up in spinal fluid....It will show up about 20% of the time. Not a good track record.
Lyme hides in the tissues, not the blood or spinal fluid.
Do you know which lab your LLMD used? He/she may not have used Igenex.... and that could result in a less than accurate test result.
Glad you found this site! It's awesome! If you dont' get many replies here, please post again over in Medical. Posted by pattilynn (Member # 8065) on :
Thanks for the info. I haven't been tested since 1993. I had the urine antigen by the LLMD at that time. I also had a western blot after I took the several months of antibiotics. It was negative. I haven't been tested again since the symptoms started again only because I can't get anyone to test me.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by pattilynn: I haven't been tested again since the symptoms started again only because I can't get anyone to test me.
well, if they're not going to test you through Igenex, then it's a waste of time anyway.
Just because the tests were negative does not rule out anything. There is no 100% accurate testing for Lyme at this time, that is why it remains a clinical diagnosis. The rashes sure sound liek Lyme, as do the neurological symptoms coupled with the fact that you improved while on antibiotics. I would go back to the LLMD, and get a full workup, and possibly re-treatment. Posted by cbb (Member # 788) on :
Hi pattilynn, Welcome to LymeNet. Good info from Miss TuTu & WildCondor.
I agree that it sounds like Lyme disease, but co-infections may be present, too. The symptom lists for Tick-Borne Diseases (TBDs) have a lot of duplications. The problem is - they each require a different treatment, so you need to have some idea of what you're targeting with the meds.
Did you decide to stop the antibiotics (abx) for Lyme, or did your dr decide to stop? What abx did you take? How long have you been off treatment?
It sounds as if you've been off abx for some time. A lot has been learned about combinations of meds & problems with co-infections like Babesiosis, Ehrlichiosis, & Bartonella.
You need to be evaluated by a Lyme Literate Med Dr (LLMD) - ASAP.
At the left, click Support Groups & check those in your state & surrounding states (especially Pennsylvania). They should have reliable info about the best drs.
You need to see a LLMD who has lots of satisfied customers & who treats Lyme patients almost exclusively.
Also, go to Seeking a Dr here on LymeNet & put your location in the title. Contact info will be sent to you by Personal Message.
If the Dr who treated you for Lyme is recommended, then you are fortunate. Make an appt & go back to see him.
If he is not recommended, then you may want to consider trying a new dr.
Posted by pattilynn (Member # 8065) on :
I started feeling better so I stopped seeing the doctor mostly because of course, I had to pay for it out of my pocket. I still had horrible fatigue, joint pain, weird rashes and I felt anxious all the time. I also had these sore spots on my ribs and back that hurt so bad if my husband touched them I would scream. It took years to feel better but I have never been completely ok. Then it hit me again this year. The AB I took was Suprax. I don't think it is still on the market as I am a nurse and I have not seen it in years. Also, I had an MRI of the brain this summer which was normal (again). Patti
Posted by cbb (Member # 788) on :
You seem to be on the right track. I hope you get the correct diagnosis & treatment you need right away.
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