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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » Seeking Doctor Central NY

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Author Topic: Seeking Doctor Central NY
jackieblue
Junior Member
Member # 50490

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Husband has been passed around to many types of doctors because he tested negative. Has experienced symptoms for many months on and off that all seem to point to Lyme. We are in a very high risk area and husband has spent a lot of time in wooded areas throughout his life. Doctors he has seen rule out Lyme solely due to negative test. Some of the ticks around here are so small they resemble a splinter or dark blemish when embedded unless viewed through a magnifying glass, so we don't know whether/when bite actually would have occurred. It's not unusual near us even for positive testers to have no knowledge of tick bite. Did 2 week antibiotic course with no improvement. Seeking referral to doctor who will see him. Prefer reasonable drove from Syracuse area if possible, but we really need to find someone appropriate to see for possible/probable Lyme in someone who has tested negative. Thank you!
Posts: 1 | From Central NY | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
Member # 9256

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Welcome to Lymenet! PM sent for upstate NY.

Lyme Disease is a clinical diagnosis made by a Lyme-literate doctor (LLMD) based on medical history, symptoms, test results, etc. Your husband should be tested through IGeneX Labs in Palo Alto, CA. They specialize in tick-borne diseases.

Here is some info about tick bites which was previously posted on Lymenet:

"Some of the ticks are so small (nymph stage) you'd never notice them. And ticks transmit a numbing agent through their saliva so that the host won't notice them."

Two weeks of antibiotics is nowhere nearly enough to treat Lyme disease. Your husband needs 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. He needs 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/NewYorkLyme/info

Maybe they can help.

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

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

Read the books written by Dr. H, the top LLMD, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are 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 - I know you are new to Lymenet, but 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 this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.

Posts: 8897 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Jackie Blue,

Sorry to hear about your hubby being ill. Hopefully he can get some help and answers soon.

If you go to www.MarylandLyme.org and look at the menu to your left you will see "DOCTOR REFERRALS".

Click there to find the names and contact information for health care professionals treating Lyme & TBD's in your state (or any state).

There is also a page with support group information, one for alternative medical professionals, educational conferences across the country, labs and their contact information, one for mental health providers, MTHFR and Morgellons providers.

There is also a list of TBD with how to diagnose them (testing), a list of symptoms for each disease and treatment info with links to the treatment guidelines.

Hope that helps! Good luck to you both!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
   

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