I have been being treated by regular doctors for a variety of issues none of which is lyme.
Treatments have ranged for mixed connective tissue disease, Dermatomyositis, sleep apnea, looking for cancer, hypothyroidism, neuropathy, and assorted other things and half my symptoms are not even included in diagnosis.
Medications prescribed thus far are prednisone, methotrexate,levothyroxine. Tests are always negative for lyme because they will only do the Elisa test. LYme questionaires I take are at least half full of yeses in almost all areas except heart.
(breaking up the post for easier reading for many here)
[ 03-13-2017, 06:07 PM: Message edited by: Robin123 ]
Posted by Tincup (Member # 5829) on :
Goodness gracious! What a bad trip you've been on already. Sorry to hear it has been so frustrating and difficult for you.
To find a Lyme treating professional in any state please go to...
You will see a menu on the left that has "DOCTOR REFERRALS". That will take you to a site that has listings for your state and others.
Sorry to say there aren't many. But, you can look near the lower end of the Michigan page and see what to do (suggestions) for sates that don't have many listings.
There is also a "Help For You" Link on the menu. It has some cost reducing tips for tests, medications, insurance issues and other things.
If you have any questions please feel free to ask. And I do hope you are feeling better soon!
Posted by Tincup (Member # 5829) on :
Oh, and concerning those doctors you've already been to that were no help, put them right here.
Lyme disease is a clinical diagnosis made by a Lyme-literate doctor (LLMD), based on symptoms, medical history, etc. The ELISA test is unreliable and you need to be tested through IGeneX Labs in Palo Alto, CA. They specialize in tick-borne diseases.
I don't know of any LLMDs in the UP of MI. If you find someone, please let me know. Contact the MI & WI Lyme Support Groups I have listed below - they would know better.
LLMDs are far and few between, unfortunately. You need to go where they are. At least half of all Lyme patients go out-of-state to get treatment.
When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner to see a LLMD by doing this.
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Btw - you need to 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 this, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Also, you should not use your real name, because this is a public forum with all sorts of people on it. Read this link about it: