Hi.. we are seeking a lyme MD in oregon.
Posted by Keebler (Member # 12673) on :
- Welcome to LymeNet but so sorry for the reason you are here.
I am sorry to tell you this but there are no LLMDs in Oregon. See the next post for an explanation. I also live in Oregon and was dx in '97 with 3 TBD (tick-borne diseases) by an out of state specialty lab. Still, today, I can find no MD who is well-enough educated regarding lyme or coinfections.
Some MDs have tried and have lost their licenses. Oregon is very strict: there is no lyme here and there will be no lyme doctors.
Can you tell me if this is a brand new infection? Do you have a bullseye rash ? Not everyone gets a rash and not all are bullseyes but that is distinctive. -
Posted by Keebler (Member # 12673) on :
- Sorry to say, there are no LLMDs in Oregon. The state medical board wants it that way and has worked very hard against lyme education for doctors. They especially discount chronic lyme in this state and are not educated regarding other tick-borne infections.
Doctors and Labs here also have a very bad track record regarding testing. The labs tend to stack the tests to ruin them before they start.
If Kaiser if the insurance, there are even more complications and roadblocks. I have a full file of articles about denied care by Kaiser.
For some other insurances, once in a while, a lucky patient with a bulls eye rash may be able to get a short course of a single Rx for a brand new infection. A lucky few of those seem to do okay. But, for those who need more care, they need to turn to a LL ND or go out of state for treatment.
But, there have also been those with a bulls eye rash to be turned away by a doctor saying: "no lyme here"
For LLMDs, patients usually travel to California or to the Seattle area.
However, there are couple of ILADS-trained LL ND (naturopathic doctors). That's a good thing. Be aware that any ND you see should be ILADS-educated.
In Oregon, LL NDs can prescribe pharmaceutical and most LL NDs incorporate Rx and supplements.
Many regular NDs want to get the body stronger, thinking the body will then take care of matters. Yes, support is absolutely vital - but not nearly enough - for lyme, not by a long shot.
While well-meaning, just as with many MDs, most NDs are just not educated enough about the serious and complex nature of lyme and co. It takes someone who has a great deal of specific education in this area and knows the science behind lyme, etc.
Having read ILADS' research, attending conferences, getting to know other LL doctors, etc. all makes a big difference.
There are also several active support groups around the state. Contact this group for details:
California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.
[California has a law that protects LLMDs who treat lyme, whereas Oregon has no such protection.]
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
- If you have other questions, be sure to post in the medical forum.
If you live in the Portland area, a support group meets this coming Sunday. Look at the OLDN site first to see when support groups meet. The sooner you connect, the better. You can find other details there that you can't get here.
The very best of luck to you. Again, here's the most important link for you:
OLDN: Oregon Lyme Disease Network -
Posted by Keebler (Member # 12673) on :
- I forgot to mention: if you have a rash, take photos from several angles in good light. Do not irritate it before snapping the photo as you want the most accurate appearance.
Mark on the back of the photo, or in a notebook, distinguishing features: rough/smooth; itch/not; hot/not; pain/not; etc.
Put a clean coin or ruler next to at least one photo and try to get your face and the rash in at least one photo to prove that is really you.
Also needed: the date. Find a magazine or newspaper with a clear date and put near the rash so you can verify the date. You might be able to stand with the TV news on in the background if that would show a date.
Now, most regular doctors really don't care and some are clueless about the importance of the bulls eye (you would need no other lyme tests but tests for other tick infections).
Some say if the bulls eye has disappeared that you could not have lyme. This is not so, however. You would need to keep record of any rash.
All the measures to document are necessary. It sounds like you are asking a ransom but having proof can save you life if a rash disappears.
Same as if you have a tick that was attached. Save the tick. Put in a hard plastic or glass bottle with a very tight lid - and a few blades of grass.
If you can share what part of Oregon where you live, others may be able to send you a PM with contact details of LL NDs or of Lyme-Friendly doctors who may fly under the radar and can be some sort of support. -
Posted by littlebit27 (Member # 24477) on :