This is topic need doctor in or near MA in forum Seeking a Doctor at LymeNet Flash.


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Posted by windingshores (Member # 48600) on :
 
I am located in the Boston area but will drive. I have had chronic Lyme since 2001 with some improvements. Last summer was infested with bird mites that seem to have brought organisms with them. Extreme crawling sensations and occasional lesions, no longer actually see anything. The bird mites lived in a filthy bird's nest and fed on sick starlings, then went in my pores. I need a doctor who is open-minded because almost no one knows anything about this and the only solutions are speculative. Thanks!
 
Posted by hopingandpraying (Member # 9256) on :
 
PM sent for MA.

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.

Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:

"Why Lyme Doctors Don't Take Insurance"
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

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.

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

Maybe they can help. They would know better about MA.

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

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

Read the book written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?". It is an excellent source of information.

Also "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 - 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.

To do that, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
 
Posted by Nancy2 (Member # 95) on :
 
PM Sent!
 
Posted by windingshores (Member # 48600) on :
 
Thanks all.

Fyi I had been on Lymenet for many years under a different name. I used several LLMD's in 2001-7. My own LLMD has retired.

It has become clear to me that the bird mite issue would best be addressed through an LLMD or other MD, possibly infectious disease, who is open-minded. I do not think the long-lasting symptoms are from mites, but from stowaways so to speak.

If you look at birdmites.org, this is not a commonly held opinion. Most people think it is mites living on them. I don't feel that way.

Re breaking up text, I have neuro Lyme myself. I also have autoimmune abnormal eye movements triggered by cancer. If I can read my posts, it is a good test : )
 
Posted by Sbright16 (Member # 49902) on :
 
Pm sent to who we were seeing.
 


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