Is it possible I have Lyme even though 2 tests were negative?

Posted by sabrina stripe on August 04, 1999 at 09:13:53
Since Dec' of '98 I started to experience the shaking at work.  Shortly after I leaned my wrist on a counter and discovered my hand shaking uncontrollably.  I went to my doctor who thought it was stress related and took a thryroid test just in case.  The thryoid was negative and he prescribed Paxil which only made the symptoms much worse.  At that point I was suffering from tremors, muscle twitching and numbness in the face.  I would wake in the middle of the night with my legs shaking uncontrollably.  I asked to see a neurologist who did a brain MRI and EMG both were normal.  After trying several other medications which also made my symptoms worse I stopped all medication and hand a lymes test repeated. Negative again.  I now sometimes experience a woozy like feeling in my head, have occasional temporary blurred spot in vision, tingling sensations along, occasional eye tearing and daily neck pain. Anxiety  has been present from the onset of symptoms and to a lesser extent prior. I also was diagnosed with fibromyalgia the year before when I experienced unexplained pain throughout the body.
I recently went to a endocronologist who is again testing me for thyroid -graves disease seems to be what he is getting out.  He said my thyroid is 1 1/2 times normal size and I am at the upper limits of normalcy for eye protrusion.  This diagnosis explains only some of my symptoms and I am quite scared.  Is it possible this is really lymes disease and I should pursue other avenues as well?
Thank you for any help you can offer me.

Posted by CCF Neuro[P] MD, RPS on August 04, 1999 at 16:43:30
Dear Sabrina:
I am assuming that you live in an area that the deer tick that spreads Lyme disease is endemic, and that you have had reason to believe that you were bit by a tick.  If this were the case, and you have had some other symptoms of Lyme disease such as the characteristic rash and joint pains then maybe another test might be helpful if it were analyzed by a different lab.  
I would guess, that since the tests you had looked at antibodies to the lyme agent and they were negative, the possibility of you having Lyme is pretty rare.  Especially if you do not live in an endemic area.  The best news is that your MRI were normal and the EMG test (if done at a good place) was normal.  Since you describe general problems but no muscle weakness, then the biggest concern of ALS is very unlikely.  You may have what we call benign fasciculations.  These are muscle twitches that are uncontrolled, they are increased in anxiety and fatigue.  They are harmless physically and they often go away on their own within months.  We are not sure what causes them although 30% of patients report a previous viral infection.  The most important point is to get fully checked out by a good neurologist to rule out other possibilities.  But my guess would be benign fasciculations.
I am not sure if I helped you at all.  Without being able to examine you it is difficult to tell you what you may or may not have.  Muscle twitches can be caused by elevated thyroid, but a high normal free T4 would be very unlikely to cause fasciculations.
Sincerely,
CCF Neuro MD

Posted by sabrina stripe on August 05, 1999 at 22:22:37
Thank you for your prompt response.  Benign fascilations being a possible answer sounds pretty good to me at this point especially if I can look forward to them disappearing as suddenly as they came.  
I do have several follow up questions:
My EMG was conducted in my neurologist's office.  How do I know how "good" she was (I did not get to see the person in same office to whom I was orignally referred to by my doctor.) Is there any easy way to check on her expertise in her area of speciality?  A tech conducted the first part of the test (shocks) and the doctor herself conducted the latter part (pricking).  I have no way of knowing if they conducted a thorough and accurate test. My last contact with her seemed to be a shrug of her shoulders as to what could be the cause of my problem as she simply ended it with - I can only tell you I don't think it is neurological.  She never mentioned the possiblity or existence of benign fascilations.
I failed to mention that I have had a serious circulation problems in the past month - limbs etc. falling asleep even as I am driving in the car for only 15 minutes or so. I don't know if this is relevant or not but the lack of circulation and the numbness were not issues prior to the tremors etc. The numbness is not confined to the face and often occurs in my arms or hand sometimes followed by "fibro" like pains.  I did quit smoking (1 pack per day) several weeks ago partially as a result of the circulation problems so far little change.  
Do you think smoking withdrawal could account for woozy like feelings even after several weeks of quitting?
I am afraid I did not understand your response concerning the "high normal free F4".  Do you mean to say that elevated thyroid in general is unlikely to be the cause of my problems?  I have my doubts since what I read of the symptoms of  grave's disease or hyperthyroidism in general does not seem to "fit" me all that well.  My tremors and twitches are most certainly not confined to my hands. The endocronologist plans to treat me for panic disorder if thryroid tests comes out negative.  Although I do experience anxiety, I do not experience many of the symptoms listed under panic disorder. I am at a loss as to who I should let treat me for what - my regular doctor has already tried Zoloft and Luxom with no success (symptoms worsened). Should I seek a 2nd opinion from another neurologist?  I'd like to get pregnant soon but am afraid that the stress of the "unknown" and medications will not be good for the unborn child. I am 33 years old - the old clock is ticking!
Sorry my follow up is so long - I truly appreciate your time, effort and any further guidance you can offer.  
Posted by CCF Neuro[P] MD, RPS on August 06, 1999 at 14:00:18
Dear Sabrina:
I really can't tell you how to tell if someone is a good EMGer or not.  Most places, at here at CCF and at the Mayo Clinic, a technician will do the first part of the exam, the electrical shocks, and then a physician will come in and do the needle exam.  Here, the people who do the EMG, that is all that they do and they are very good at doing them.  In the library there is a book on medical specialists, you can see if the physician is board certified in EMG.
I am not sure what to tell you about the numbness.  It could be a wide variety of things.  I don't think the ceasation in smoking would cause alot of problems but one never knows.  It doesn't suprise me that the physician did not say anythig to you as she probably need to fully evaluate all the data before she wrote a letter to your doctor explaining the findings.  The normal T4 levels,even though it is high normal should have no, no bearing on your fasciculations.
Since I have not evaluated you, I really can't make a statement about a panic disorder.  If you fulfill the DSM-VI criteria for a panic disorder then your physician may have a point, if not then I would seek another opinion.
I hope this helps.
Sincerely,
CCF Neuro MD