posted
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. Posts: 1 | From Oregon | Registered: Apr 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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.
Just zipper in the state name where you seek a LL doctor. To join for discussion, best to join in your own state. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
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.
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.
Posts: 8981 | From Illinois | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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