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Lyme Disease
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Posted 9/9/2013 6:15 PM (GMT 0)
  I have a possible mis diagnosis.  I had a tick on my head middle part of May this year.  I removed it and at the end part of June I experienced numbness in legs/feet and the feeling of walking in sand barefoot.  I went to the doctor first part of August all lab results came up normal and they showed me to a neurologist which did a M.R.I. brain scan, T-scan  with and without contrast.  It showed white spots by brain stem and one on neck.  She instantly said it was M.S. since I showed spots in more than one location.  I have done the western blot (sent in myself from lab core) and the neurologist supposidly had one sent in previous (didn't see any paper work just said it was negative for lyme).  After it was brought up about Lyme from the doctor,  I started thinking of the tick that was on me and did some research.  I also thought of the one that was on me prior (3-4 years) that I had found on my belt line by stomach which had been on me long enough to be the size of a dime.  I am in central Nebraska and need help with this.  I would like to get someone to allow me to use antibiotics for a period to see if that helps my situation.  (arms-legs-feet-abdomen-numbness, fatigued after minimal anything, tired all the time, night sweats, dark urine some of the time, alchohol effectiveness (had two drinks and was falling down drunk for a 240lb man) confused
Posted 9/9/2013 6:49 PM (GMT 0)
I would suspect Lyme too if I were you, you should find a Lyme literate dr. (LLMD)soon. Hopefully others on here will have info to help you do that.
Posted 9/9/2013 6:54 PM (GMT 0)
  Finding a LLMD in central nebraska or surrounding states has shown to be a task.  It has been unheard of about Lyme in nebraska to these doctors.  Just 3 weeks ago several counties over they reported 5 cases on the news and I am sure there symptoms or rash came up right away.
Posted 9/9/2013 6:59 PM (GMT 0)
Get a second opinion. I agree with Sooverthis, you need to see a doctor who is a Lymes specialist. Not all Lymes literate doctors practice effective treatment plans however. So when seeking a Lymes specialist to diagnose you, do research on the doctor, the clinic and the treatment plan to make sure you are comfortable with all of those, given you do have Lymes and not MS. Leave the decision to yourself. This is your health and your life, no one else has to live with whichever disease or treatment you endure.
Posted 9/9/2013 7:07 PM (GMT 0)
  Had a second opinion today and they used the first opinion notes and didn't have any M.R.I images present (they didn't send them). They poked around on me for the preliminary stuff and used the notes for the conclusion.  This is the second group of people that have asked about my bladder function (which is fine) and the response is thats odd.  I have looked up M.S. and it said one of the tattle tale signs is bladder function and if nothing there then its probably something else.
Posted 9/9/2013 7:31 PM (GMT 0)
CentralNab,

You mentioned the night sweats and dark urine in your list of symptoms. Those two are symptoms of babesiosis which is one of the co-infections associated with lyme.
Posted 9/9/2013 7:35 PM (GMT 0)
  is that testing different than the western blot?  If so what would I request and where could I get it done?
Posted 9/10/2013 12:37 AM (GMT 0)
Igenex is one lab that does all kinds of tick-borne infection testing, but please realize that blood tests are very poor for these diseases, missing 50% of those that actually have the infections. The most knowledgeable LLMD's diagnose clinically (by symptoms).

If you can tell us a bigger city that you are close to, then maybe someone will know of a LLMD near you. It's worth a try if you are willing.
Posted 9/10/2013 12:38 PM (GMT 0)
I am 3 hours from Omaha and 6 hours from Denver. I am willing to travel to get this sorted out.
Posted 9/11/2013 11:48 PM (GMT 0)
Okay, the best I can do is Denver or Boulder Colorado. If this is doable for you, please email me so that I can give you the details. Please include your user name so that I know who I am talking with!! :-)
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