Lymes diagnosis

[gmiro]

I live in a high risk Lymes area. Both my parents,my wife and many friends and locals have been diagnosed with Lymes.
I was bitten by a tick last fall, developed a rash, but not the typical bullseye, and was tested negative . In febuary I came down with flue like symptoms with a fever of aroung 101, which went away, soon after I started experiencing joint pain in my knees which has since spread to virtually every joint in my body,and continues to get more painfull. I went back to my doctor and was retested for Lymes,and put on 100mg Doxycycaline 2 times a day, after  couple of days I experienced relief from stiffness in my joints but then the symptoms returned and are getting worse, I also recieved my 2nd Lymes test results which came up negative. Should I pursue further Lymes treatment? My doctor seems to rely on the test results,and is looking at things like Lupus, arthritis etc. but I am not sure about this approach.

[CCF-Neuro-M.D.-JT]

Although this is getting out of the realm of neurology and into infectious diseases/rheumatology, arthritis and neurologic manifestations of Lyme disease can occur months after the initial tick bite.  In addition, some reports state that lab testing for Lyme can be negative in up to 10% patients who do have the disease.  Your case is rather complex with symptoms that do sound like it could be Lyme disease, but it is not exactly a slam dunk case - meaning there are some atypical features such as the appearance of the rash.  The symptoms could also represent part of an autoimmune/connective tissue disease and I can see how your doctor is pursuing other avenues to make sure treatable causes of your symptom complex are not missed.  If Lyme disease is still a consideration, especially if you've been bitten by a tick in an area with an increased incidence of the disease, I would recommend a second opinion at a major academic center by either an infectious disease expert or rheumatologist. Fortunately, it sounds like you've at least been partially treated with the doxycycline.  Good luck.

[Sandra777]

I've heard having a brain MRI with contrast could show Lyme's disease.

[mea]

Please "go with your gut" feeling...it really sounds like you should actively pursue the Lyme Disease...you should have had at least 28-30 day therapy when you had the rash...my husband was bitten by "something" (we thought it was a spider) and he developed a bulls eye rash which became more like a sore and this treated first by meds and then the tissue was cut out twice before getting all of it before it finally healed.  18-24 months later he developed a flat oval red rash, not really a bulls eye, and we were very panicky thinking that he was going to have to go thru the earlier treatment again (this time it was on the front of his leg and not in the calf muscle...His PCP gave him the 28 day therapy, which unfortunately, he didn't take correctly, the rash went away, he felt fine...he thought everything was OK...that was in 1995-96...he experienced several episodes of "sciatica" which always affecting the l leg, that got him down for week or so (he was still able to work) even though MRI showed nothing wrong with his back we didn't investigate further because symptoms would go away...In 2001 he had yet another episode of "sciatica" and a repeat MRI which showed nothing and our PCP referred him to a Neuro...but before he could the Dr, this episode got worse (over 3-4 week period) until one night he went to bed feeling especially bad with lower back and leg pain and his condition the next morning was changed so drastically, that our lives have not been the same since.  The attack was so acute, that he was unable to stand, both arms involved, confused and was not able to communicate or reason, he was airlifted from our local hospital to larger hospital. Although his tests for Lymes (and everything else) continues to be negative, but positive for Ehrilichia...his DX is Vasculitis secondary to mononeuritis multiplex...I'm convinced that all of this started with that bite 8, now 10, years ago.  He spent nearly a month in the hospital, more than a week of that in ICU, and then at a rehabilitative hospital for therapy.  I am very thankful to his Neuro and those who supported him by their aggressive treatment that first week that he was even able to live through the attack.

He continues with L leg neuropathy and L forearm,hand...both of which are much improved with therapy and he continues to have short-term memory problems which is remnant of the encephalopy.  We tried the neurontin, but it was discontinued a year ago with much improvement in his cognitive (it was like a "fog" had lifted) but he continues with cytoxan, prednisone,  pain medication + other meds for overall health mntc. He's had 1 other attack (much smaller) prior to cytoxan therapy and luckily it didn't affect any motor function ownly new numbness in his r hand.    

He'll never be able to work again because of the neuropathies.  Looking back...I could see a lot of the symptoms in hind-sight but you don't see everything when it's not so obvious....the sciatica episodes could always be explained away with certain activities that immediately occurred just priot to attacks.  This was a man who was NEVER sick and NEVER complained when he did feel bad...

PLEASE pursue your problem, you need to take charge and if your doctor won't work with you, you need to get another doctor.   I got lucky...he communicates regularly with our PCP to keep him informed of his treatment as "we" continue to manage his care!!!Luckily, we live close enough to his Neuro that we can easily travel for his care...the most important thing now is to monitor his blood work because of the meds that suppress the immune system...to ward off another vasculitic attack.  Sorry to be so "windy"...but we just came off home from 1-week hospital visits due to low blood counts/anemia...but if this advice can keep just one person from going thru what we have, it will be worth it.