Anyone's Doctor Refusing to Work with Them? Anyone in Portland, OR with MD Recs?

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CatLady18
Regular Member


Date Joined Oct 2017
Total Posts : 26
   Posted 11/3/2017 1:32 PM (GMT -7)   
I have been working with a naturopath in Portland, OR. He seems pretty solid and was the one to introduce me to the concept of lyme. I noticed he was hesitant to move forward with the test until i started herxing from herbs that I was taking for SIBO and developed a Bart-like rash. He was straight up with me and told me that he suspects lyme and his heart sank when he saw that I have Kaiser. He said he has never taken on a lyme patient with my insurance and that it will be a very long, expensive road ahead. He also informed me that there is probably no other doctor in the city that would take me on as a client with my insurance. He told me that he didn't want to scare me, but wanted to prepare me for the hard reality in this city.

I have been waiting 2 weeks for my Igenex results to come back, and the only way I found out the results are in is because I called Igenex myself, my doctor's office did not follow up. I scheduled an appointment to go over my results for next week. Today I received a call that they'd be scheduling me with my doctor's assistant (totally clueless). I asked why, and was told that my doctor no longer accepts my insurance type. I raised a stink and they eventually scheduled me with him again. I am thinking my results are positive, and for whatever reason, this doctor no longer wants to work with me. Has anyone else had this experience?? Also, I do not have the ability to pay an LLMD out of pocket, and have no idea how people on this board can afford to do so. Can any Portlanders steer me to a qualified doctor that might take Kaiser?

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6049
   Posted 11/3/2017 7:37 PM (GMT -7)   
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.

​​Y​​ou 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​

Y​ou can email ​the​ Tick-Borne Disease Alliance at​: medicalinfo@tbdalliance.org

ILADS has their own referral system as well:
​​​ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org

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

Lyme coaching
www.lymecoaching.com/#!schedule-a-call/c1gzt

Please don't hesitate to ask any questions that come up!

-p
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

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9015
   Posted 11/4/2017 6:31 AM (GMT -7)   
CatLady18, as of 2006 there were 12 states that enacted legislation to protect doctors treating lyme. California is one and you might have to jump down there to be treated. Although, I am totally unsure about Kaiser insurance. ---- http://jemsekspecialty.com/legislation/

Here are some resources that I have used. They really are quite up to date on their referrals. I think you will have to call each one to check on insurance.

/sites.google.com/site/lymedoctors/oregon

/globallymealliance.org/education-awareness/find-medical-professional/

ilads.org/ilads_media/physician-referral/

/www.lymediseaseassociation.org/ -- Go to Dr. Referral tab

Post Edited (PeteZa) : 11/4/2017 7:34:43 AM (GMT-6)


astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3826
   Posted 11/4/2017 12:36 PM (GMT -7)   
The big issue here is even in states where they cant carry forward with "lyme prosecution" to the Dr., the insurance companies will eventually drop these Drs. who treat lymies.

So if its a Dr who previously based their practice as inc accepting- they dont want to change that for their non-lyme patients (the bulk of customers).

Somewhere in the middle are Drs taking the chance, still accepting insc knowing you will be denied appt time coverage, but usually your RX meds will be covered. ABX is spendy so this helps if you go with ABX.

We're then left with NP's and LLMDs who never took ins anyway - to treat us.
Ended ABX for Lyme in 2015. Rebuilding / repairing / fine tuning since then. What an adventure this has been.

CatLady18
Regular Member


Date Joined Oct 2017
Total Posts : 26
   Posted 11/4/2017 10:40 PM (GMT -7)   
Pirouette, PeteZa, and Astroman, thank you so very much for taking the time to reply and for sharing your knowledge as well as all these incredible resources!

It's so difficult even trying to explain to people why I might not be able to get a proper diagnosis or treatment in OR, it is just too crazy to believe and sounds like some fictional conspiracy theory. I don't understand why this isn't public knowledge and there aren't more people out there advocating.

If I do have lyme, I believe I transmitted it in CA and I wish I had stayed there. I appear to be in one of the worst possible states to have lyme. With all of those amazing resources you all provided, not a single doc in OR or WA appears to take insurance. I doubt I have the ability to travel to CA either due to finances. I am trying not to panic without a diagnosis yet, but I'm feeling pretty helpless right now. Thank you for the support.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27161
   Posted 11/4/2017 11:42 PM (GMT -7)   
CatLady - Even if you don't find a Dr. to treat you...and/or can't afford one if you do find one...you still have the option of treating herbally.

Cowden's schedule is accessible on the 'net' and Buhner's protocols - you can purchase his Healing Lyme book and get started on one of those two.
The herbs can be purchased online.

There are more - but I just mentioned a couple of the more popular herbal protocols. Many of the members here do some of the herbs from the protocols I mentioned...or a full protocol...so there is help here for you.

....and there are herbalists (Buhner has a list of ones he recommends) - that will do phone/skype appts. and help craft a protocol for you.

Just don't want you to feel desperate...there are still some options for you!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

CatLady18
Regular Member


Date Joined Oct 2017
Total Posts : 26
   Posted 11/5/2017 12:20 AM (GMT -7)   
Thank you, girlie, for the reminder that there are other options. Thank god for forums like this and folks like Buhner!

CatLady18
Regular Member


Date Joined Oct 2017
Total Posts : 26
   Posted 11/6/2017 2:06 PM (GMT -7)   
I did meet with my doctor today, and we had a pretty frank discussion. It seems like his desire not to work with me is monetary based. He would be taking a loss to work with me under my insurance plan. Since his resident needs clients, he feels like that would be a fair trade off since she needs experience with lyme patients. He did mention concerns about disciplinary actions, and is actually going to be trained to become an ILADS doctor and is meeting with attorneys to discuss ways to protect himself. He said it's not personal, it's a business decision. He has had better luck with Blue Cross, so I'm going to look into their plans.

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 87
   Posted 11/10/2017 10:10 PM (GMT -7)   
I'm seeing a lyme dr. in pdx. Let me know if you want the name.

CatLady18
Regular Member


Date Joined Oct 2017
Total Posts : 26
   Posted 11/10/2017 10:18 PM (GMT -7)   
Yes, please, PDX! I'd also love to connect with other lymies in Portland if you know of a support group or care to connect. Feel free to email me.

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 87
   Posted 11/10/2017 11:20 PM (GMT -7)   
Ok, just emailed you.

sharo
Regular Member


Date Joined Oct 2017
Total Posts : 49
   Posted 11/11/2017 12:26 AM (GMT -7)   
It is the same in the UK. I had a private positive test for Lymes after having 2 negs over 10 years. The NHS are refusing to accept this and have forced me to go back to the government testing facility for a re-test. My surgery is following "draft" guidelines at the moment and still not treating me, waiting for results to come back. I am sure they are fully aware that it will be expensive for long-term lymes and although i try not to be paranoid, it appears they would like the test to be neg again, forcing me to look privately for treatment (which i can't afford). We have daily articles on people who are selling their homes, trying to raise funds on the internet to go to other countries etc and living the nightmare.
The UK facility is run by a guy who claimed that Ebola did not exist! Say's it all really.
The more i learn, the more i realise how this epidemic is being hidden world wide!

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 87
   Posted 11/11/2017 6:23 PM (GMT -7)   
Oh, I just noticed what you mentioned about Kaiser. I had Kaiser before/when I was diagnosed and had to go out of network to get treatment and pay out of pocket. Kaiser didn't even want to test me for lyme. and the ID dr dismissed my positive Igenex test. I would suggest you apply for financial assistance. I did and they covered me at 100%. I still had to pay out of pocket for my lyme dr, but any time I needed to go to urgent care or anything else through Kaiser, I paid nothing. They also covered some of my previous ER visits which would have left me in mega debt. I'm a teacher and so I switched insurance this school year so that I could find a lyme dr who actually takes insurance. Now I have moda.
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