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Veteran Member

Date Joined Aug 2013
Total Posts : 718
   Posted 1/25/2014 8:15 PM (GMT -7)   
Did most of you go to a Neurologist first in your search?
Was he thinking of MS after testing? And did some of you have white spots on your Brain S.?
What made you start looking at Lyme Disease or Chronic Lyme?
Did the LLMD give you a dx of LD and would that be disagreed with by the Neuro doc?
Can you get your PCP to order the tests that the LLMD wants so that it can be covered by Insurance?
If we can show lab test results of LD to the Neuro doc how could he deny this and not treat it accordingly?
Why do LLMD not take Medicare or other Insurance?


Veteran Member

Date Joined Jan 2014
Total Posts : 993
   Posted 1/25/2014 8:59 PM (GMT -7)   
Medicaid won't pay for treatments that aren't recommended and or a considered the standard of care for an illness and lyme isn't even recognized as being able to persist after 6 wks of antibiotics. Even a lot of good private insurances don't pay for the treatments that an LLMD would implement.
I didn't go to a neuro, I had an NP who actually read my medical history and looked at me at the time, last year, and asked if I'd ever been tested for lyme. I wasn't searching for a lyme dx, not had it even crossed my mind. I'm an RN and I did t even know chronic lyme exsisted.
You may be able to have some test costs deferred through your PCP.
BTW: you asked me some questions about my symptoms on your other thread and I answered them. :)

Forum Moderator

Date Joined May 2007
Total Posts : 35859
   Posted 1/26/2014 8:02 AM (GMT -7)   
Yes, I went to a Neuro in my search, he diagnosed me (verbally only) with Bell's Palsy due to Lyme - then reneged when I asked during a different appt later on, saying that he didn't say that. eyes

Most of the other doc's that I saw in my search told me MS - even had one yell at me in his office because I wouldn't start MS meds that day! But I felt that I had too many symptoms that still weren't being accounted for. How many people will come down with 3 or 4 diseases all at the same time anyway????

I had (?) white spots on my brain, but I don't remember if there were any on my brain stem. I even have the pictures of my brain on a CD!! LOL!

I was actually thinking I had M.E. ( myalgic encephalomyelitis), which is now considered Chronic Fatigue -although they really are a bit different. It was someone on a forum- much like this one - that suggested that I look into Lyme disease. :-)

Yep, even with a diagnosis from a LLMD, there wasn't a doc any where in my area that would even let me in the door. I was turned away by every single doc in my area and had to drive south 2 hours to find a doc that would even consider examining me. It was good though, as she became my doc and helped me heal!!

Docs that don't want to see the truth will use all kinds of excuses to not treat or acknowledge the test results - from saying that it's a false positive, saying that the lab is "rigged" in some way to show more positives than there really are, to only agreeing to give a person a small daily dose of an abx for only a short time to 'quiet us'. Don't fall for this!!

There have been quite a few LLMD's that have had to have a "monitor" in their office - where the doc has had to have every treatment decision they make reviewed first - or have actually lost not only their practice but their license to practice due to insurance companies 'turning them in' for prescribing "inappropriate" treatments by the IDSA standards. So the doc's chose to not take insurance so they could continue to treat more patients. Of course there are some doc's that take advantage of this and charge truly outrageous prices -but that's why everyone should 'comparison shop' for even their Lyme doc.
Treatment for Lyme & Bart ended Dec. 2011 - no active symptoms
Treatment for Babesia ended Dec. 2012 - no active symptoms
Healed and loving life!

Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV

Questions about what I've posted or just have questions? Please email me!!! Click on blue envelope under my screen name.

Garden Peace
Forum Moderator

Date Joined Sep 2012
Total Posts : 4191
   Posted 1/26/2014 9:28 AM (GMT -7)   
We just got very lucky. I switched to our doctor because he is an MD/ND and our insurance would pay for him. I knew nothing about Lyme disease and he just happened to be a LLMD/ND.

Veteran Member

Date Joined Dec 2013
Total Posts : 1293
   Posted 1/26/2014 1:32 PM (GMT -7)   
I used to work for a neurologist so I started seeing him and he ran every blood test in the book it seemed like but he never gave me a Lyme diagnoses, he said peripheral neuropathy, carpel tunnel. I had previously found an Ayervedic doc who gave me herbs that made me feel 90% better but once I got off them my symptoms came back and even more neuro ones. I got this in 1998 and didn't start working for him till 2003 or 2004 but he did supply me with meds to get me through the pain and my muscles seemed like in the firing mode all the time so took muscle relaxers.

I just got diagnosed 2 months ago and feel like sending all these docs I saw a letter telling them about the Lyme and maybe they won't let others suffer.

The medical field stinks, they have to do standard of care and it doesn't cure things it just makes people more miserable or comfortable. I am glad more docs are standing up and helping people find a cause.

Hope you feel better soon.

Veteran Member

Date Joined Aug 2013
Total Posts : 718
   Posted 1/27/2014 5:58 PM (GMT -7)   
I wish that the Neuros would feel the way that we do. The doc that I go to never seems too concerned about anything. I have no life, except a few good days here and there. And they just seem so not interested.

I hope when I go to see the LLMD, she is more caring & understanding!
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