Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Welcome to this place where it's hoped you can get the information and support that will help.
Best: find an ILADS educated LL ND through the groups listed in next post.
Or continue to work with LLMD in other state. Or both, as many do.
Unfortunately, Oregon is just about the worst state in the country in which to live for anyone with chronic lyme, as is apparent from your note. There are no LLMDs here - by design of the Oregon Medical Board.
This is not likely to change anytime soon, sadly. The official stance is that chronic lyme does not exist
and even with a brand new case, it's a toss of dice as to if a doctor will or won't have the knowledge and courage to treat and still it's far too low a dose of a single Rx, so inadequate (just in case anyone in your family ever has a new case, know that most will say "no lyme in Oregon").
You also need to know that even if you don't ask an MD here to treat lyme, even mentioning it can put you at risk for some hostility (or fear from the doctor who knows they are at risk of loosing their license if they help with lyme).
There is a terrible stigma attached by most doctors to any patient in Oregon who is dealing with lyme or other tick borne infections. It's wrong and some doctors don't feel that way but it comes from the top down and the culture of hostility is something that you need to know about as you find your GP, etc.
Stay very quiet about this to staff in any doctor's office, too - even if out having lunch. I know this sounds odd but it's very hard for those doctors who do want to help and you never know who may be listening.
If word gets around it could harm any cordial doctor who is working with you, even for other reasons. Be protective if you find one who can work with you in some ways.
Ask the support groups about the best way to approach any MD - even if for other care - so that a good relationship can be forged.
Fortunately, there are several ILADS educated naturopathic doctors in the state. In Oregon, NDs can prescribe any Rx they deem necessary. And some do take insurance - for some diagnoses.
Do not go to just any ND, though, and if an ND says they know all about lyme, make sure they really do. They may think they do, may be very willing but some are not fully aware of the complexities.
It really takes that ILADS physician training and connection with other ILADS members, both MDs (in other states) and ND in state and elsewhere. The on-going education through ILADS and the professional relationships are important in any doctor you choose. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
The Kaiser Papers – not by or from Kaiser Insurance but about how they deal with lyme inquiries. Also gives background regarding lack of lyme assessment / treatment in general, regardless of one’s insurance coverage.
OANP Urges Naturopathic Doctors & Patients to File Complaints to Insurance Division Urging Insurers to Comply with the ACA
Section 2706 - the provider non-discrimination provision of the Public Health Service Act as amended by the Affordable Care Act - went into effect on January 1, 2014.
Insurance plans issued on or after this date are now prohibited from discriminating against naturopathic physicians (or any other provider for that matter)
when the ND is treating the same conditions or performing the same services that the insurer would otherwise cover.
After almost a year of OANP working with Oregon’s Insurance Division in advance of this law going into effect, it appears that the majority of insurers and insurance plans are in some way still violating this law. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are. None in OR.
Most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
I don't know if the problem has been resolved, but this is important information posted on Lymenet about obtaining doctors' names from ILADS:
"Getting names from ILADS is not recommended. They don't know anything about the doctors they are giving you.
ILADS will give out the name of any doctor who wants their name given out. All they have to do is take the short ILADS Lyme course.
So, doctors do it to get referrals. Meanwhile, the doctor may have never treated a Lyme patient in his life, never cured anyone of Lyme, doesn't follow the ILADS Lyme treatment guidelines, etc.
ILADS now recognizes that this is a problem, and they are working on a solution.
So, get names from this board, Lyme support groups (see "Support Groups" on left side of page), and other Lyme patients who are knowledgeable. Don't waste your time looking into doctors names given out by ILADS.
Personal recommendations are the way to go when it comes to Lyme doctors. Get LOTS of input before spending lots of money on a doc.
And, consider the source of each recommendation. If the person is new to Lyme and this is their first Lyme doctor, their opinion is marginal.
If the person has seen a few top Lyme doctors, their opinion is valuable.
If the person has been cured of Lyme disease, their opinion is gold!
The doctor is the key to getting rid of this horrendous disease - can't emphasize that enough. Many doctors treat Lyme Disease, but only a very few know enough to get rid of it for a person. You have to find one of those few."
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
If you go to www.MarylandLyme.org you will see a doctor referral section on the menu to your left. That will give you contact information for traditional, natural and other kinds of health care providers treating Lyme and tick borne diseases.
If you type phone or Skype in the search bar on the doctor referral page you may find some that you can visit less frequently in person.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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