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. -------------------------------------------------------------------------------- Posts: 1 | From: Ohio | Registered: Oct 2005 | IP: Logged |
Posted by Lisianthus (Member # 6631) on :
Sounds like you are relapsing from Lyme. My LLMD told me that they are finding out now that if you had a bullseye rash that it is actually a sign of a re-infection. That you have actually had lyme previously.
This is a symptom checklist:
Have you had any of the following? CIRCLE ALL YES ANSWERS
Unexplained fevers, sweats, chills, or flushing Unexplained weight change (loss or gain) Fatigue, tiredness, poor stamina Unexplained hair loss Swollen glands: list areas _______________________________________________ Sore throat Testicular pain/pelvic pain Unexplained menstrual irregularity Unexplained milk production; breast pain Irritable bladder or bladder dysfunction Sexual dysfunction or loss of libido Upset stomach or abdominal pain Change in bowel function (constipation, diarrhea) Chest pain or rib soreness Shortness of breath, cough Heart palpitations, pulse skips, heart block Any history of a heart murmur or valve prolapse? Joint pain or swelling: list joints _________________________________________________ Stiffness of the joints or back Muscle pain or cramps Twitching of the face or other muscles Headache Neck creaks and cracks, neck stiffness, neck pain Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity Facial paralysis (Bell's Palsy) Eyes/Vision: double, blurry, increased floaters, light sensitivity Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity Increased motion sickness, vertigo, poor balance Lightheadedness, wooziness, unavoidable need to sit or lie down Tremor Confusion, difficulty in thinking Difficulty with concentration, reading Forgetfulness, poor short term memory, poor attention, problem absorbing new information Disorientation: getting lost, going to wrong places Difficulty with speech or writing; word or name block Mood swings, irritability, depression Disturbed sleep -- too much, too little, fractionated, early awakening Exaggerated symptoms or worse hangover from alcohol
I would suggest either going back to your previous LLMD and get tested again. Or find a new one.
Oh, and BTW -- I was told there was Lyme in Michigan either.
Good luck, Lisi
Posted by heiwalove (Member # 6467) on :
sounds like you are indeed relapsing or were reinfected.
and steroids are a big no-no!! they make lyme so much worse.
good luck.
Posted by shiloah831 (Member # 3643) on :
you definitely sound like you have re-lapsed or were infected again.. i have been infected 3 times.. re-infected.. no fun.. i have the floaters and the hip pain.. but also everything on the list i have or have had that Lisi mentioned in her message..ughh.. take care and i hope you get the help you need....
Posted by DR. Wiseass (Member # 6777) on :
Well - I'm not a doc - but it certainly sounds like a long list of Lyme symptoms.
In my opinion - you should call up that LLMD again - and see if perhaps more antibiotics will help.
Sorry to suggest the bad news that it could be Lyme...but maybe that's better than 'spinal cord inflammation'...or the ever popular diagnosis of "Idon'tknow" which your docs seem fond of saying.
Get thee to an LLMD!
Blessings,
Posted by cbb (Member # 788) on :
pattilynn, Didn't know you had posted here, so I responded under General Support. Don't know how to copy my response here, so please go to Gen Support to read it, especially suggestions about an LLMD.
I agree it sounds like Lyme, but I think there's also a possibility you could have co-infections with LD. Info should be in list of "Links for Newbies". An excellent concise version can be found at http://flash.lymenet.org/ubb/Forum1/HTML/021366.html
If you haven't done so, get copies of the results of all the tests they have run. Sometimes these things have disappeared when you go back to get them later.
Posted by duke77 (Member # 5051) on :
Wow that sounds exactly like what happened to me but I had tinnitus as well. I had the negative MRI and my doctor told me as well there is no Lyme in Georgia. You tested negative was it an ELISA because I was negative on the ELISA as well but positive on the LUAT and PCR and borderline on the WB. Atleast your neurologist was honest and said he didn't know what was wrong. Mine said I had Viral Menningitis.
Posted by pattilynn (Member # 8065) on :
Thanks everyone for the replies and yes, I would rather have Lyme than spinal cord inflammation anyday. This site is great. Everyone seems to care so much about each other. Patti
Posted by timaca (Member # 6911) on :
Hi Patti~
OK....I read your post here....it sounds like perhaps you had lyme, and never got totally rid of it with the antibiotics that you were on...but subdued it enough so you immune system could hold it at bay at least.
The vancomycin given during surgery is a strong antibiotic. When it was given to me, I had a huge flare of symptoms. It sounds like it flared yours too. This is called a "herxheimer like reaction." It happens to people with lyme who are given antibiotics.
The steroids given to you aggravated the problem instead of solving it, because steroids suppress the immune function...allowing the lyme to grow.
You can do some searches here and on the google search about herxheimer reactions and steroids and lyme. Print out what you learn, and take them to your doctor.
Ask that you be weaned off the steroids, and tested for lyme again (western blot, please). Please know that lyme tests are poor at best, and there is no definitive test for lyme. Ask that you be started on antibiotics.
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