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Topic: Please help me find a LLMD in Upstate NY (14437)
Member # 50732
08-07-2017 02:35 PM
I have been bitten by ticks dozens of times in upstate NY due to spending the majority of my time outside.
I believe I may have Lyme disease due to a number of reasons but my long time Dr. will not give me a test and insists it will just give a false positive and moves on to referring me to yet another specialist or pain management etc. and everyone of them has a different take on what's going on yet no one is treating me or even helping my situation at this time. Multiple people have suggested it could be Lyme disease related but that seems to be where the discussion ends. Multiple unexplained neurological issues, pain, digestive issues, weakness, anxiety and more. Please help me and thanks in advance for any assistance. I am new to forums so any helpful recommendations are appreciated past and future I hope my amendments were done correctly thanks to those who have already reached out to offer support and help. [ 08-07-2017, 10:11 PM: Message edited by: LuceiferLyme ]
Posts: | From 1 Dansville, NY 14437 | Registered: Aug 2017
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Frequent Contributor (5K+ posts)
Member # 9256
08-07-2017 09:43 PM
Welcome to Lymenet! PM sent for upstate NY.
Many people have experienced the same here, so you are not alone. You should add "in upstate NY" in your title, so people will know specifically where you are looking. To do this, click the pencil/paper icon, make your changes then click "Edit Post". 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/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 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. 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 here who cannot read large blocks of text due to neurological problems from Lyme. Click the pencil/paper icon, make your changes then click "Edit Post". Thanks.
Posts: | From 8898 Illinois | Registered: May 2006
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Member # 9197
08-07-2017 10:04 PM
Good thing you managed to get here! We will help you through this. First thing is get to a good Lyme-treating doctor.
Plus read through the links above.
Posts: | From 13069 San Francisco | Registered: May 2006
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