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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » LLMD needed ASAP in Western NY

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Author Topic: LLMD needed ASAP in Western NY
Nolan83
Junior Member
Member # 52393

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I’ve been sick for a while and have been getting worse fast. My symptoms are severe joint and muscle pain, muscle weakness, joint and muscle stiffness, heart palpitations, SOB, extreme fatigue, memory loss…. I’ve gone to an orthopedic who said it was just arthritis, I went to a cardiologist who did an angiogram and found nothing, and I went to a pulmonologist who has ordered a pulmonary function test and sleep study and tomorrow I’m seeing a neuro-surgeon for my neck and spine pain. I’m so sick of all these doctors! I was bitten a few years ago while visiting Tennessee and thought nothing of it. But now, with all these symptoms, I’m wondering if it’s Lyme. I really need to get to the bottom of this! My quality of life is going down hill fast
Posts: 1 | From Silver Creek, NY | Registered: Jul 2021  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

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Welcome to Lymenet Nolan83

So sorry you are struggling. Lymenet can help!

You can start by taking the MSIDS (Multiple Systemic Infectious Disease Syndrome ) questionnaire. Page 20.

https://divcomplatform.s3.amazonaws.com/ip.divcomstaging.com/images/976b3dd6f2c8d3460012f264483a9737.pdf

You can request LLMD’s through Global Lyme Alliance here;
https://www.globallymealliance.org/lyme-patient-support/find-medical-professional/

You can request LLMD’s through ILADS (International Lyme and Associated Diseases Society) here;
https://www.ilads.org/patient-care/provider-search/

These are simple e-mail formats that you fill out and they respond back with LLMD’s closest to your area. You must research each LLMD. To do this, google for patient reviews and join your area’s Lyme support group.

Western New York Lyme Support;
https://m.facebook.com/LymeWNY/community

Empire State Lyme Support Group;
http://www.empirestatelymediseaseassociation.org/

Please utilize Lymenet’s ‘search’ function located in the middle of the home page for answers to questions you may have.

Since you have seen many doctors ( very common in the Lyme community), be sure to get copies of all test results, blood work, procedures performed, medication lists, providers seen, etc . Start folder with all medical info and take to your 1st LLMD appointment. This can save you money as many LLMD’s are out-of-pocket expensive along with duplicate test orders.

We will be here for you. I am sending you a private message.

Posts: 2290 | From Florida | Registered: Nov 2016  |  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 NY & OH.

So sorry you are going through this. I am not a doctor, but your symptoms sound like Lyme to me.

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. At least half of all Lyme patients go out-of-state for proper treatment.

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.

Contact the NY Lyme Support Groups - they would know better about NY and might be able to help you.

https://whatislyme.com/lyme-in-new-york/

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 "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 online.

View "Under Our Skin"
https://m.youtube.com/watch?v=2JgR_Jfbhv8&noapp=1&client=mv-google

and "Under Our Skin2: Emergence"
https://drive.google.com/open?id=1iAzRksyHfSNWBGsHcugYl9a8WQ9TnDCW

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 tab, make your changes, then click "Edit Post". Thanks.

Posts: 8824 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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