Only ONE LLMD in IN & no new patients

[IndigoRiley]

Idk what I am going to do. I called the lady in MI someone suggested and she said there is only ONE in Indiana. And she is not taking new patients right now. And that she thinks ALL of them only take cash, no insurance. :( But at least now I dont have to stay in indiana due to my medicaid and have a better shot at finding one maybe in IL or MI. I just dont understand why they make this soooo hard. I mean I do know the reasons, but it is just ridiculous. Something needs to be done. Is there another hotline type thing I can call. I am really upset right now. Are there other disease that require long term antibiotics like lyme does? Maybe I can get a dr to say treating me for something else thru use of IV antibiotics. I also was wondering..since the oral ones are already helping me a little bit(I am on day 13/14 I believe,does that mean Oral will work as long as I take them for so long? or do u think I need IV bc of how chronic my lyme is now? I was bit in 2009.

[wonko]

I also was treated soley with oral abx.  My LLMD explained that either way, long-term treatment is necessary, and while perhaps less long for IV, the risks and costs of IV made it not a good option for most patients.  My insurance covered almost all of my Rx's for oral abx, but I would have incurred more out-of-pocket for the IV's.

I can also relate to the frustration of finding a local LLMD.  I got most of my treatment while living near DC, where I could easily drive to a number of LLMD's.  Since moving to the Midwest, the best option for an LLMD that I have found is over 4 hours away, and while I tried to work with that doctor I was just not able to make it to appointments.  (I kept having to cancel due to weather or changes in my schedule.)  

That has contributed to my current status of being off treatment.  I have been off abx for about a year, and while I have not back-slided, in a perfect world I would do more treatment.  I was put on synthroid for hypthyroidism in the fall, and that seems to have helped how I feel a good deal, but I still have days when I think the Lyme and Co. is holding me back.  

Before finding a regional LLMD. and when I was more sick, I even travelled from the Midwest back to DC to see my LLMD.  That also became prohibitive since appointments need to be made so far in advance, and both the weather and my work schedule kept interfering.

If you really need to, and if you possible can, it is worth doing whatever it takes to get to a good doctor.  So, consider doing as I say, not as I do!

[JackieCalifornia]

Since I wasn't offered or suggested IV treatment, I haven't been through the decision tree, but it definitely should be a reasoned decision ... IV has problems and risks that oral meds do not ... infections, infiltration, other stuff I don't even know about.  Sometimes it's worth it, but sometimes not, and that, as said above, depends on your particular situation, so listen to the doc's approach, ask the questions, and then decide what makes sense for you.  Your doc however may believe IV is unnecessary or improper for you for medical reasons, and s/he would then be bound to do what they believe is right, including refusing to provide IV.  So roll with it, see what the doc says, go from there.

[cave76]

"Tri-State Lyme Disease Support Group for Western Kentucky, Southern Indiana, Southern Illinois, and Other Nearby Areas"

Contact Person for this Group: Jennifer Matthews
Contact Person Telephone: [phone]
Contact Person E-Mail: ***@****

Lymenet is notorious for not keeping the support groups updated.
But you might post in their forum "seeking a doctor" at:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum&f=2&submit=Go

(You may have to join Lymenet to post (not to read) but it's free.)

Don't post your name. It's suggested that the name of the state(s) be put first.
There are directions on how to post there. A private PM will be sent to you.

[cave76]

@ indigo

Sorry that contact in MI couldn't help you.

Just a few thoughts, in no particular order (until my coffee kicks in!)

Since you're on Medicaid---- there may be many doctors who won't accept you, llmd or not. :( That's sad but true.

Most llmds want cash up front.

Many llmds willl agree to only seeing their patients once a year after patient is established. Obviously that has some caveats to it.

There are patient assistance programs available for people in need. (You still need a doctor!)
Here is the url for the ones I know about. I used one of them many years ago and it really helped.

http://www.medhelp.org/posts/Lyme-Disease/Financial-assistance-for-needy-Lyme-patients/show/1933554

Back in 2009 another person posted these. I don't know many of them and some may be gone by now:

http://www.medhelp.org/posts/Lyme-Disease/Financial-help-in-treatment/show/1050879

Mojo is right----- IV's aren't always the answer. But sometimes they are!!!! (Shows you how individual responses are and makes this whole "Lyme thing" a nightmare!) I'd not 'insist' in IV if you can get orals easier--- just my opinion.

[JackieCalifornia]

Me three:  I only ever had oral antibiotics.  Worked fine.

[mojogal]

I was bitten over 20 years ago and have only been on orals except for a hospital visit. I have improved a lot in my first year of treatment.

[youvegottobekidding]

Indigo, you don't need to fixate on IV antibiotics. The majority of Lyme expert docs use oral ones anyway. It's getting a high enough dosage amnd the right mix of different ones that matters.

[JackieCalifornia]

You're quite welcome.  Because treatment can take several months up to a year or so, I think appointments are often only once a month, so it's not like you would be going to Chicago a lot.

Also, you can send an email to

                     contact   [at]   ILADS   [dot]    org

and tell them you live in northern Indiana, southeast of Chicago about [X] miles and see what LLMD names they can give you.  I haven't used that referral service, but it only takes an email to ask.

ILADS (if this hasn't been mentioned before) is the main voluntary group for Lyme specialists [LLMDs].  No guarantees, but at least they have a broader view of Lyme than non-LLMD-type docs.

If the first one doesn't work out, send them another email and say "Dr X didn't work out, do you have another name for me?" and remind them where you live and how far you can travel.

My appointments with my LLMD were a few at the beginning, but once the diagnosis was made (Lyme and one co-infection), I only went once a month.

[IndigoRiley]

Thankyou!!!!

[JackieCalifornia]

About finding an LLMD .... it looks like you are maybe 30 miles from Chicago, which gives you options.

Try googling/searching

                    chicago lyme

and you will get a page full of links to patient support groups and much other information.  It's what I would do.