We are new residents of Oregon coast,near Waldport.
Lyme has flared up very badly since prior treatment.
Very much need to locate any LLMDs ASAP in order to restart appropriate treatment.
Prior DOCS were in Washington state. Hoping to find new ones here in Oregon?
Not coping well, and have a four year old both to care for and to find reliable testing for as well.
Changes and new options now in testing and treatments from my time of first positive diagnosis 7 yrs ago.
I was one of the more fortunate ones to have my Naturopath test with western blot Igenex lab and meet the CDC criteria and also test positive for Babesia.
However we let down our guard while starting a family and I became very sick again while in West Virginia climate and tick endemic territory.
Any / all info suggestions welcomed! Thanks!
(breaking up a paragraph for easier reading)
[ 12-10-2016, 06:10 PM: Message edited by: Robin123 ]
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet!
Sorry to hear about your health problems. From what I understand, there are no Lyme-literate doctors (LLMDs) in Oregon.
I would recommend you put "in OR" in your title, so people will know specifically where you are looking. Click on the pencil/paper icon, make your changes, then click "Edit Post".
Posted by TF (Member # 14183) on :
Yes, put the state in your title. People just scroll through the titles of the posts looking for states that they have doctors for.
They don't open up posts to look for that info.
So, you need Oregon and any other state you are willing to travel to, to be in your title of your post.
And, from long-time poster on LymeNet with screen name of Keebler, I understand that there are no lyme docs in Oregon based on the stand the medical establishment in Oregon has taken. No such docs allowed there. So sorry.
Welcome to LymeNet! We will help you all we can.
Posted by Robin123 (Member # 9197) on :
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.
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":
Poster "Keebler" is very knowledgeable about Oregon, but she is having health challenges, so I am sending information she posted earlier this year:
"Welcome. Sorry for what brings you here, though.
There are no LLMDs in Oregon because the Oregon Medical Board is so very hostile against the realities of Lyme & other tick-borne infections.
However, there are a few ILADS educated LL NDs (just be sure they are ILADS educated so they have the necessary basics. They MUST be truly Lyme-literate in the full sense).
Connect with all possible below to get some suggestions not just for Oregon but many go out of state for treatment to Washington state or to California.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.
You can compare and contrast many approaches with links to articles, books, methods . . .
Oregon Lyme Disease Network & local group listings
This group has been working very hard to help expand awareness and, hopefully thereby, improve access to treatment - but there is strong resistance. Be sure to read over the links so you understand fully the stance against Lyme that the Oregon Medical board takes - so that you can know how best to find the help you need.
Connect with them for guidance in doctor selection.
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.
LymeDisease.org - an excellent educational organization
A good place to connect and learn about various aspects of treatment & options for doctors, etc. -------------------------------------------------
Portland, Oregon Lyme Support Group meeting
Portland Lyme Support Group - Remember for planning purposes and for sharing with others, the group meets on the second Sunday of the month from 1-3 pm in the second floor conference room at Legacy Good Samaritan Hospital, 1040 NW 22nd Ave. in Portland.
The building is across the street from the Hospital's main entrance. There is a parking garage behind this building where you can park and a doorway in the garage on the first level that connects to the building.
They meet in the second floor conference room. There is an elevator if you can not take stairs and signs will posted. Remember to get a parking pass at the meeting.
Parking Change:
Good Samaritan Hospital has added gates to their parking structures. You will need to pick up a parking validation pass at the meeting which you will need when leaving the parking structure.
Fragrance Free:
As a reminder, please refrain from using scented soaps and dryer sheets or from wearing scented perfumes, colognes, lotions etc. the day of the meeting.
Many individuals with Lyme also deal with chemical sensitivities. Unfortunately we have had some that have left the meeting due to the impact that fragrances have caused." --------------------------------------------------
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.