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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » Looking for LLMD in my new area - OR

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Author Topic: Looking for LLMD in my new area - OR
Mombyzomby
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Member # 49458

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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 ]

Posts: 1 | From Oregon coast | Registered: Dec 2016  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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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".

Posts: 8914 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
TF
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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.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Robin123
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I thought I heard there were some naturopaths?

You can also check with your online state chatsite - https://groups.yahoo.com/neo/groups/oregonlyme/info

Posts: 13070 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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PM sent for WA.

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.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

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":

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

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.

http://www.oregonlyme.com

Oregon Lyme Disease Network

http://www.oregonlyme.com/supportgroupsinoregon.html

Support Groups in Oregon


www.ilads.org

ILADS


www.lymedisease.org

Lyme Disease.org - a wonderful educational site

and you can find online state groups that I hope will help you find what you need.


http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

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 . . .


www.oregonlyme.com

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.

https://www.facebook.com/groups/869280209779701/

Their Facebook page


http://lyme.kaiserpapers.org/oregon.html

Lyme Disease in Oregon - some background

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.


www.ilads.org

ILADS - International Lyme and Associated Diseases Society


www.lymedisease.org

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."
--------------------------------------------------

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/OregonLyme/info

Maybe they can help.

Some more resources (including Support Group info):
http://whatislyme.com/websites-and-support-groups-by-state/

http://www.lymenet.org/SupportGroups/UnitedStates/Oregon/

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Here are some links with a great deal of good information about Lyme and children:

https://sites.google.com/site/drjoneskids/symptoms-literature

http://www.childrenslymenetwork.org/

The top LLMD, Dr. H, has written a book entitled, "Why Can't I Get Better?". It is an excellent source of information.

Also read "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

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.

[ 12-13-2016, 09:28 PM: Message edited by: hopingandpraying ]

Posts: 8914 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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