I got the news I was afraid I would get. My PCP will not submit the out-of-network referral required for my insurance to review my case and consider covering my initial visit to LLMD Dr. C and part of the cost of any tests ordered by Dr. C. Also, she will not consider consulting with Dr. C and ordering tests he recommends herself (so the insurance will cover them).

My PCP says she would be glad to refer me to a local infectious disease specialist. Period.

I still plan to go to Dr. C and also have my son evaluated. But as a single Mom with a humble income, it isn't realistic for me to think I can afford much testing or treatment without some help from the insurance.

I honestly doubt I will find a local Lyme literate PCP thinking out of the box and willing to act against cost saving HMO protocols. Anyone know a good PCP within the QualChoice network in or near Little Rock, AR?

Any other suggestions for how to campaign for insurance coverage?

I made an appt to see my PCP tomorrow. I want a chance to present my concerns and have her respond to me face to face. I expect the answer will be the same, but I don't really have anything to lose by trying.

Any suggestions of medical articles etc that I should take in an effort to educate her about "the other camp"? I expect she already knows and has made up her mind about which camp she is in. But again, I have nothing to lose by trying.

Thanks in advance for any feedback.

Sonoran

YOU MUST BE VIGILANT and firm

Also, take in articles of long term antibiotic treatment for ACNE. Yes, ACNE.
if it is "dangerous" to treat lyme with long term doxycycline, and the progression of lyme can lead to heart, brain and connective tissue disorder, and the progression of acne can lead to...uhhh welll...low self esteem? scar? then it seems that this argument by the medical profession is mute!!!

Go in armed with treatment for TB, that too requires a long dose of antibiotic!

Go in armed with long term disability caused by lyme disease....

and demand to be tested...

YOU HAVE TO HAVE ENOUGH INFORMATION....to make it worth his while to test you....in otherwords...could you sue him if he doesnt? (not that you would even go this route...but he would have to know that its a possibility...which may may him think about all consequences for his negligence in diagnosis)

Lastly...
write all your symtpoms and history. Organize it as follows:

I, Dr. X, acknowledge the following symptoms in _______________. Despite the following symptoms, I refuse to test for lyme disease.

Signed,
Dr. X

And then tell him either test you or fill out the form you so handily provided.

This is what we did to finally get our tests done, and found they were postiive. took me 8 years to get serious about it...and took my daughter over three years to finally feel like life was worth living...
dont wast the time I did.

For documentation, the ILADS summary at http://www.ilads.org Also the Burrascano guidelines and summary of symptoms at the same site. Check all the symptoms you have, and make a written summary of why you suspect TBI/LD. Attach this to whatever you give her to sign, and request a copy for you, and that it be included in your permanent medical record.

Forcing the doctor to give you written confirmation that she will neither treat you, test you using recognized labs, nor refer you to a recognized Lyme Disease/Tick Borne Illness specialist (not an ID "generalist"), despite the symptom checklist and history, may force the referral that you want.

If at all possible, take someone with you as a patient advocate. It can be amazingly effective just to have a witness.

Of course, it will probably permanently rupture your relationship with her, so you need to look for another PCP anyway.

My husband helped get the ball rolling on most of this - I think sometimes having someone accompany you at an appt. and act as your advocate can help out. The doc sees, and gets acquainted with, the person they may have to answer to if they do nothing. The advocate can even ask point-blank whether the doc is going to do such-n-such or not. They can afford to be a little blunt.

I didn't (knock on wood!!) have any problem with insurance. I was afraid I would but outside of a couple things (couple Rx's), they were great with paying everything. I did have to have all of the Rx's written by LLMD re-written by PCP and that was a giant hassle but I eventually got it done.

Thanks for the responses. I need to clarify something. I'm already positive for Lyme via the western blot. PCP ordered the test over a year ago. When result was pos, she tx
me with 10 or 14 days of Doxy (don't remember which). Said I shouldn't have anymore problems but if I did she would refer me to an Infectious Disease specialist.

As my sore throat and fever went away after Doxy, I didn't worry at the time. I did not know the myriad of other symptoms I have had long term (including but not limited to headaches, joint pain, back pain, muscle pain, irregular heart beat, insomnia, and LOTS of mental fog and confusion) could be caused by Lyme. Grew up in rural Ohio and Michigan and spent time regularly with relatives in rural PA. Bit multiple times by ticks during childhood. Recently I learned more about Lyme, put 2 and 2 together, and decided to be evaluated for late stage Lyme.

Have appt with Dr. Crist mid Aug. Called UAMS (the most respected teaching hospital covered by my insurance here in Arkansas). inquired about an ID specialist on my insurance. Was told he is very good and familiar with Lyme disease, but that he has had very few patients with Lyme because it's rare here. Said he is a good doctor, but honestly not very experienced at treating Lyme. Maybe he would be open to consulting with Dr. C. I plan to keep my appt with Dr. C who I will see first and then also see the UAMS ID doc.

Am a single Mom at the beginning of my not very lucrative humanitarian career. MUST have insurance help to afford treament.

Wish me the best!