Hi CatLady18 -
I am not a Portlander but I hope others will respond soon.
While I think your hunch is probably right and that he is avoiding treating you, he needs to tell you this to your face and I like that you are being persistent - get the word from the horse's mouth. There is a possibility that something else is going on but at least you will know one way or another. I really like the fact that he was straight with you about
the realities of dealing with insurance but I don't like the fact that he's being evasive.
The hard truth is that VERY few LLMDs work with insurance companies. If you're lucky to find someone who does you will likely need to switch to the one or two insurance plans they do participate in--rather than "finding one who takes Kaiser".
Nearly everyone on this board is working within a cash system with their Lyme specialist. There a few MDs who are willing to work with patients by consulting with other Lyme specialists but there are limits to this and the treatment they can provide. This is one reason why many people are following DIY protocols like Buhner, Cowden and others.
The reasons why most specialist don't participate are numerous and serious and the Lyme cabal LOVES to claim they're all fraudulent qwacks since they almost all are forced to operate outside of the insurance industry. The truth is, they're forced to in order to heal Lyme & Co patients.
The insurance companies force regulations that govern MD's entire practices and the way in which they administer care (and don't). They force doctors to follow the outdated IDSA treatment guidelines that are ineffective. If they don't follow the guidelines, they risk being placed under administrative review and
open themselves up to liabilities, expensive review processes and hearings. And usually, they lose and get terminated by the company.
This harassment can also include their malpractice insurance companies - many LLMDs who have been reported to medical boards, some who have subsequently lost practice licenses have been reported by their own malpractice insurance companies or ins companies of patients.
There are a few states where legislation has been passed to protect professionals who implement alternative practices but this in NO WAY protects them from being sued by anyone. They still have to expend on average $500k-600k in court defending themselves.
My lovely, brilliant, caring and courageous LLMD (operating a 501.c3) is a prime example of this horrific hunt on Lyme specialists. She's been successfully sued which has been entirely disruptive to her practice and patients, finally was able to start seeing patients again and was finally terminated by the one ins company she worked with. This just happened 2 days ago.
Here are a few resources for you:
Please review the "New to Lyme?" thread info at the top of the page - it has invaluable information about
diagnosis, symptoms, treatment, etc. and will help you prepare for your first appointment.www.healingwell.com/community/default.aspx?f=30&m=1606610
Please email Girlie
, our head mod, and she can help you with contact info for LLMDs in your area to consider. You can find her email address in her profile. Or click here:www.healingwell.com/community/profile.aspx?f=30&p=197951
I'm also a mod but not around as consistently but will help however I can.
You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74
You can email the Tick-Borne Disease Alliance at: email@example.com
ILADS has their own referral system as well:ilads.org/ilads_media/physician-referral/
You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme--they adhere dogmatically to the IDSA and very narrow definition of Lyme and limited treatment. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php
Please don't hesitate to ask any questions that come up!
LYME FORUM MODERATOR
Chronic late-stage lyme—likely infected in '98; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses, GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many supps; cholestyramine