I am new to these forums, though I have suffered from morgellons disease since I was bit by a deer fly in 2015. I have had nothing but bad experiences with the regular medical community.
Please help? Any help would be so, so appreciated. Many thanks.
Posts: 1 | From Portland or | Registered: Nov 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Welcome. Sorry for why you are here, of course.
Your experiences with the medical community in Portland are typical, unfortunately. The groups below will be more up to date on specifics yet, still, you are not likely to find any doctor who takes OHP (medicaid) - or any insurance - and is able to address the complexities of your health.
Not wanting to be the bearer of bad news, I don't know how else to say this but likely it's going to take a lot of piecing together from any low-cost sliding fee scale that any LL ND might have, or maybe some of their articles, lectures, etc.
I don't have the cognitive energy to compose sentences as I would like - or as would most benefit the reader. See links below. And Take Care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There are no LLMDs in Oregon (The Oregon Medical Board is harshly opposed to the idea of lyme and to its proper treatment as well as still uninformed about most other tick-borne infections).
The Oregon Lyme Network has worked hard to forge relationships and open the learning about lyme, etc. so do connect with them.
There might be a low key MD here or there who might offer a short term single approach if one has an unquestionable CDC criteria positve test to a brand new case of lyme. Beyond, that, patients are on their own.
Treating lyme long enough, the idea of Chronic Lyme, other infections and - sadly, also morgellons - are steps too far in Oregon for the medical board and the dictate what all doctors are allowed to treat.
However, there are a few LL NDs who are ILADS trained. But do not make the mistake of thinking that all NDs know about lyme, or know enough no matter how well meaning they may be.
Be sure they have completed the ILADS Physician Training Program as the basic training and keep up with ILADS conference materials, too.
A ND is a naturopathic physician and, in Oregon, they are also licensed in pharmaceutical medicines as well as herbal approaches. Two national groups for the basics:
Search for local / state lyme FACEBOOK groups, too.
Where ever you see any location or set date for any meeting, CONFIRM FIRST with a leader that such detail is still valid. Support Groups can change location / times.
Get books, find websites from Stephen H. BUHNER. He is a master herbalist who is extremely LL. Even if you are not apt to go that route, there is so much - so much - great detail about how the various tick borne infections work / work against a person and how one might work with body for success.
He not only covers various herbal approaches that one might do while they wait to find a LL doctor but also explains so much about how the various infections affect the body. Just search his name for his website and also books.
There may be some things you can do on your own, or after talking with some support members . . . while you sort out how to proceed.
For starters some good results come up with a search at Google for: morgellons, Buhner -
[ 01-07-2020, 01:54 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
For those considering complementary support methods / or other avenues entirely:
Herbal Safety considerations & reference books; etc.
BOOKS - 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 . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever - not if there is inflammation in the spine with active infection. And that we should never be advised to do neck / head / shoulder stands.)
Links here to two major sources: Buhner, & Zhang. Be sure to get their books.
RIFE Machine - Reference LINKS - another approach -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Welcome to Lymenet Cairo
Oregon is hostile to any mention of Lyme Dissease and Tick Borne Infections. An epic failure to it's citizens. California and Washington State are posting record numbers of new Lyme cases but for some reason, the ticks miraculously grow wings and fly right over the state of Oregon. 😡
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