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Posted by pins&needles (Member # 37178) on :
 
I'm an older adult seeking a LLMD in Oregon.

I've been seeing an alternative medicine doctor that believes I have Lyme disease.

I have the symptoms of blurred vision, muscle spasms and cramps, nerve pain in my hands and feet, severe sweating, muscle weekness and pain, loss of coordination, diagnosis of bi-polar disorder, sleep problems, gastrointestinal problems, and the degree of all of the above symptoms just keep getting worse.

I feel alone in my illness. All of the doctors that I've seen so far disregard any link to Lyme disease.

What I've found even harder to deal with, is that my own family does not believe me, when I try to explain the amount of pain that I am in, and the struggle that I continue to have, in trying to press on with my life, despite the severity of my symptoms.

Thank you all so much, for providing this site. [Smile]
 
Posted by Keebler (Member # 12673) on :
 
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First, there are ways to find care. So hold on.

I'm sorry to see you write what I also found: "All of the doctors that I've seen so far disregard any link to Lyme disease."

That is Oregon. It's just the way it is with MDs. You will not find a MD who can treat advanced lyme in Oregon (and most ignore early or acute lyme) - and that is not likely to change anytime soon.

Your experience is not at all rare, sadly.

Your family? Don't expect them to understand. Share these links and do not put yourself in the position of defending yourself, at all. Just share some of the information and they can either rise up to meet you or not.

Not sure where in Oregon you live, but there are zero lyme literate MDs (LLMD) in Oregon, sadly.

Just across the river from Portland, there is one LLMD/ND in Vancouver, WA.

Otherwise, travel to California or other parts of Washington state is required to find a LLMD.

However, there are several good ILADS-educated LL NDs (naturopathic doctors) in Oregon.

It sounds like you may be seeing a ND, but not necessarily one of those in Oregon who is ILADS educated and experienced with lyme?

A list of Oregon support groups at the bottom of this information page can help you find an ILADS-educated LL ND in state or a LLMD out of state.

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

Lyme Disease in Oregon

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.

SUPPORT GROUPS listed at BOTTOM OF PAGE

=================================

On-line support through www.LymeDisease.org -

http://health.groups.yahoo.com/group/YOURSTATENAMELyme

Just zipper in the state name where you seek a LL doctor. To join for discussion, best to join in your own state.
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Posted by Keebler (Member # 12673) on :
 
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here.

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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.
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Posted by hopingandpraying (Member # 9256) on :
 
So sorry you are going through this. Believe me, you are not alone!

It would be good for your family to view "Under Our Skin", a very informative video about Lyme disease, patients' stories, and all the politics involved.

This video may be viewed on Hulu for free (I'm not sure if it's still available).
http://www.hulu.com/watch/26871/under-our-skin

A good book is "Cure Unknown" by Pamela Weintraub. She is a scientific writer who had Lyme along with her entire family.

This book covers their journey as well as all the controversy surrounding this horrible disease and its complex treatment. You can probably find it in your local library or for a reasonable cost on Amazon.com.

You might also want to click on "Support Groups" in the upper left-hand corner of the Lymenet page, then "OR". Contact information will come up. Maybe they can help you.
 
Posted by Keebler (Member # 12673) on :
 
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In that support group link through here, the link will not work to the Oregon Lyme Disease Network because they had to close due to lack of funding.

There are still local groups around the state, though.

Good luck.
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Posted by katiebobatie (Member # 28753) on :
 
pm sent
 


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