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Avatar universal

I am desperately looking for an LLMD near Kansas City.

I am desperately looking for an LLMD near Kansas City.  I have been very ill for 3 months and has been to so many doctors and specialists to no avail.  Does anyone have any recommendations, please!?' I've been diagnosised with Bartonella Henslae CSD and I need a LLMD.  I've seen 3 different doctors and none have helped nor know much about it.  Please if anyone can refer me to a doctor that can help..
8 Responses
Avatar universal
Sorry to hear about your situation!  You are doing what I would do ... actually, you are doing what I did:  find a Lyme doc!

If you go to the ILADS website and indicate where you are located ('Kansas City MS') and how far you can travel, ILADS can send you contact information for docs near you.  That doesn't mean each of those docs is king on the mountain and the best ever, but it's a place to start.

Also look for patient affinity groups in your area ... those near you often have excellent insight (from personal experience) as to which Lyme docs are viewed highly in your area.

Note that many Lyme docs need or simply prefer to remain unnamed in public sites like this one, because the 'old-think' MDs sometimes are a problem who try to shut down more progressive thinkers about Lyme, by complaining to the local or state medical boards.  A little discrete snooping around in your area should find you some good leads.  

Let us know how it goes, and we'll keep brainstorming as needed.  Take care!  All good wishes to you --
Typo above:  
Kansas City is in MO [Missouri], not MS [Mississippi]!  Duh.
PS  I just searched online for     -- Kansas City Lyme -- and got some quite good leads for patient affinity groups like 'Lyme Association of Greater Kansas City.'  Give it a whirl!
Avatar universal
Thank you Jackie...I did get 3 referrals from the ILAD and called all 3 with no answer..I'm hoping that they will call me back..I'm going to to Lyme association of greater kansas city right now and see if I can find something. Thank you again..I don't understand why this disease is such a black hole..I feel like the lost child that no one cares about.
Things will get better -- not overnight, but over a few months, very gradually.  You are doing the right things -- first, to find a doc you are comfortable working with -- and taking steps from there for diagnosis confirmation and then treatment.  It's not you that is lost in the 'black hole' -- it's all of us when ill.  

When I was feeling low, I would mutter to myself over and over, "It's not me -- it's the bugz.  It's not me -- it's the bugz."  And that really is true -- the Lyme bacteria mess with the whole endocrine (hormonal) system in the body, causing us to sometimes feel low and sad and not knowing what to do next.  I would mutter to myself, "It's not me; it's the bugz [meaning the Lyme bacteria].  It's not me; it's the bugz."  That way I could separate the old me from the ill me, and keep plowing ahead to get well.  

So hang on, and come back here when it helps you.  Here I am, years after I got rid of Lyme, and I still come here just to give the Lyme bugs a good whacking.  :)  

Take care, and hold on.  We've all been where you are, and we are glad you are continuing the fight to get well.  J.
Avatar universal
You're so kind to help and really the positive words are what I need right now...I'm still struggling to find a doctor to help me.  Most of these doctors don't accept insurance.  I did find one and he is no longer taking new patients.It looks like I'm going to have to pay $300 for 1 hr of his time and every test and txment won't be covered.  This is the cheapest I could find.  Everyone else is $700 or more.  The Infectous disease doctor who does take my insurance won't treat me with antibiotics because I have already taken them for 2 weeks and they say that should be enough.  I'm taking homeopathics on my own because a friend who had lyme took them and reports he is better now but he was also on abx for several months.  I won't give up in looking for someone to help.  I'm curious what type of doctor did you see and what was your treatment regimen?  
Avatar universal
Sorry for the delay in responding -- been way too busy at work lately.

It may be that some (or many) of the Lyme docs don't participate in medical insurance plans, because (I'm guessing a bit here) a doc who is part of a plan may get a lot of his/her patients through referrals through the plan ... just as you are trying to do. I understand that many of the insurance plans have rules about how their docs can diagnose and treat, such as "MDs under our plans are not permitted to treat X disease with A, B, and C antibiotics, because research has shown that only antibiotic D is effective against disease X."  

There are lots of reasons this happens, but one of them may be that the insurance companies need to set boundaries to keep MDs from testing and treating with meds etc. that maybe aren't really effective -- or that the insurance company and its rules have determined that the drug is not known well enough yet, etc.  I understand that HMO plans often keep docs from prescribing certain treatments because those treatments are highly expensive, and the docs who are the bosses at the insurance company don't think it's useful or that there is a less expensive med to use instead.

You may find (as I did) that there are quite good Lyme specialists who are *not* part of medical plans that are so restrictive, including docs who are not in large medical plans or any medical plans at all.  My Lyme doc is quite well known in the field, and that doc takes *no* insurance plans at all ... it saves time and staff costs, and also allows the doc to write a simple bill to the patient, the patient then submits the bill to his/her insurance company, and the ins. co. pays you, then you pay the bill if you haven't already.  Why does this work?  Because the doc can write a simple bill stating medical care given, and the insurance company can look the other way and let the simple wording on the bill not cause problems for the insurance company's strict policies about how to treat Lyme.

Sounds ridiculously simple, but it works.  My Lyme doc was a solo MD, with a staff who helped run the office, and the bills the doc gave me were simply worded without getting into the mess of how to diagnose and treat Lyme in the insurance company's view.  My own insurance company was a big-name organization, and my Lyme doc wrote a relatively simple bill, the insurance company paid most of it (less a small co-pay), and I got treated the way my MD wanted me to be treated.  Never a quibble.

Look around your area and see what Lyme-oriented patient groups are there, and they can likely clue you in on how to find a good (and affordable) MD.  

About the infectious disease (ID) doc:  his response is typically what I would expect from an ID doc.  They just don't believe in Lyme except as a simple infection that a couple of weeks of doxycycline will kill.  Sometimes, maybe, but not when one has been infected for a long time or has other infections that the 'Lyme' ticks often carry.  (I had Lyme and babesisos, for example.  Needed two entirely different meds.)

This is where those local patient groups are very handy:  they've already figured out who the good local Lyme docs are.  Also go the ILADS website and look at their referral section ... you tell them the area where you live ('near Topeka KS') and how far you can reasonably travel for appointments.  (After the initial diagnosis, further follow up appointments are at least several weeks apart.  Lyme takes its time about getting gone, and can take months to treat ... but it's worth it.

As to what meds I took, it changes all the time in all Lyme patients, because the Lyme ticks often bring more than just Lyme disease with them, and those other infections often need separate meds from the Lyme meds.  So there is no 'one-size-fits-all' approach, and also that's why it's soooo important to have a good Lyme doc.

If you go to the ILADS website, there is a place to request information on Lyme MDs near you, and also be sure to look for local patient groups near you.  The internet is your friend.

Let us know how you do!  All good wishes --
Avatar universal
There is somebody that is supposed to be really good at KU Medical Center. I was referred to him by cardiosurgeon Emmanuel Daon. I'm sorry I don't remember his name.
Avatar universal
There is somebody that is supposed to be really good at KU Medical Center. I was referred to him by cardiosurgeon Emmanuel Daon. I'm sorry I don't remember his name.
Avatar universal
I am from Kansas City, positive for Lyme and other coinfections and just now looked up Lyme here on MedHelp and I just saw your note.  If you have not already found a good Lyme Literate Dr, ( and I only found 2 in the whole KC area,  then call the Olathe Lyme and Other Diseases Clinic in Overland Park, Ks. The only other LLMD I found is in Columbia, Missouri and his wait list is 1-2 years for an appt..
  I started treatment in Oct. 2015, and then I moved to Oregon.  However, I still consult with the OLAD clinic, even while living here.
I hope you are doing ok!

Avatar universal
I hope you see my response from today!
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