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Looking for LLMD in Kansas City area

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Posted 1/21/2015 6:48 AM (GMT 0)
I need to start over with a new LLMD in the Kansas City area...jdoes ANYONE know one??? My first tests in May of 2007 showed almost everything...ehrlicia, babes and bartenella. I did not test positive for Lyme...just the co-infections. I am having trouble walking now and swallowing. I also am very anemic (8.1) and am having nucleated red blood cells. (Seems that is something you should only have if you are 1-2 days old...OR a fetus.) Now over the last several months have started to have trouble with balance and walking. It's like walking stiff legged. Very weird. The EMG was off and the neurologist is catching his head. The hematologist wanted my to repeat the bone marrow biopsy..which I did last week. I see them both this Friday. My question is...has anyone else had all the neuro symptoms of really bad diseases like weak muscles in the legs and arms (but not be them) and the blood disease symptoms (but not be them). The only thing I can attribute them to is Bartenella that hides...the doctors don't understand it. It is the only thing that makes sense in a very nonsensical way. Looking for any response from anyone not as crazy as me, now. :) Oh...over the last week I have begun to have trouble swallowing and started itching. The only meds I am on are opiates for pain and vitamins. I am at a loss. Thanks to ANYONE. God bless you all that are dealing with this. ~L

Post Edited By Moderator (achievinggrace) : 1/21/2015 4:19:29 AM (GMT-7)

Posted 1/21/2015 7:01 AM (GMT 0)
Hi Lore,

Really sorry to hear all that you are experiencing! :-( Not sure about the blood issues, but the weak legs you are describing are really common to MANY of us on here with Lyme. A few months ago I was walking like an 80-year-old lady as well. My balance was totally off due to vertigo and dizziness. My legs were very weak and extremely heavy. My arms were often like this at night and would fall asleep when I was in bed. MS symptoms started to develop, like weak grasp, twitching face, etc.

As soon as I saw an LLMD and he put me on doxy I was able to walk again. The dizziness and vertigo disappeared after about 12 days, and then I could walk normally again with no problems. As for the swallowing, others just posted about a symptom like this today. Look up the posts by IHL--she got man responses from other lymies with the same issue. We can't diagnose you, but it sounds like your tests from 2007 could have missed the lyme. It's possible that now the symptoms have worsened. I say this only because the tests to ID lyme are notoriously bad. And with all those other positive results, it's likely you got lyme as well. Again, I'm not a doctor, just going off of what I've read on here and learned in my research.

As far as what you're taking, it sounds like (IF you have lyme) you need much stronger antibiotics or a thorough herb regimen to combat whatever is going on. To find a good doctor, start a new post with the title "Looking for LLMD in Kansas City". Best of luck to you!!!!

Maui
Posted 1/21/2015 11:22 AM (GMT 0)
Hi Lore,

I edited the subject line in your post so people will help you find an LLMD,

Certainly hope you get some treatment soon. You came up negative for Lyme because all the coinfections are stopping your body from producing antibodies to the Lyme.

As alarming as your situation is, good and thorough treatment will get you back to your old self.
Posted 1/21/2015 2:07 PM (GMT 0)
Hi lore-

I am in KC but my treatment is in the very early stages, it is just the standard month of Doxy right now for lyme. I was diagnosed through a family MD but he is fantastic. He was willing to run every test under the sun to get to the bottom of my issues. AND he convinced ME to take the antibiotics when I thought my was result was actually negative based on the outdated CDC criteria. I am not sure if he can test or treat for co-infections though. Is there a way I can private message you more info on LLMDs I know of? They are not in KC, but within a couple hours drive away.
Posted 1/21/2015 3:00 PM (GMT 0)
If you email me, I can provide the names of a couple of LLMDs in the KC area.

-p
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