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Why was I granted a visit and then denied with no reason?
Spine Health | Last Active: 1 day ago | Replies (17)Comment receiving replies
Please maybe they can’t help me with the parasitic infection because of the high Valley not treating me and it just getting so severe, but it has settled into my joint spaces and continues to deteriorate me because I need the correct diagnosis and treatment please help me because my daughter is slowly having the same issues and she would never be able to handle what I went through. Please help me.
Replies to "Please maybe they can’t help me with the parasitic infection because of the high Valley not..."
@bella13 I am sure what you are going through is difficult. The problem with Lyme disease and the various co-infections that can come with it is that there are not a lot of reliable tests to confirm an infection, and different organisms of infection may require different treatments. With medicine being evidence based, that leaves doctors not knowing what is wrong or what to do. This is very controversial. Science and medical knowledge has not caught up with the problems that exist and until it is widely proven and accepted, a patient is left with an "unknown illness". ILADS is a group of Lyme disease specialists and they are criticized by conventional doctors because they treat patients based on symptoms and there may not be reliable tests that can back up a diagnosis. Some claim they are too aggressive or that treatments are not appropriate, but they do help Lyme patients.
I did some searching and I was able to find some resources for you for Lyme and associated disease information that you mentioned your doctor thinks applies. I found that Columbia University Irving Medical Center has a Lyme and Tick Born Disease Research Center. You can find them at this link. https://www.columbia-lyme.org/
I found this video from Columbia about a book they promote, but the video also has some specific case information and is worth watching. It starts as a simple book talking about perceptions about Lyme, but get past that.
This is a documentary about Lyme
https://underourskin.com/
These are also helpful links and several have pages with provider searches for doctors who are knowledgeable about Lyme.
This lab is recognized for accuracy of testing. The old standard Western Blot test can miss a Lyme infection. Please also see the video for Columbia that explains why antigens tests are not very accurate, and how they tested spinal fluid instead.
https://igenex.com/
https://igenex.com/the-igenex-advantage/
https://www.columbia-lyme.org/
https://www.lymedisease.org/
https://www.ilads.org/
https://www.globallymealliance.org/
Scroll in this document to find suggested treatment protocols.
https://www.idsociety.org/practice-guideline/lyme-disease/#null
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I’m a good person. We are good family. Everybody knows where we live and has been watching this take place and it has devastated my family when this letter came in the mail after I told them the lady on the phone told me she would be getting me out to you guys ASAP and my daughter in with orthopedics because she didn’t have a referral because I do have a referral they were taking me. How can that change? It’s so cold hearted. I’m a nurse as well. I was administrator for my health company. This isn’t how it works. I don’t know why I am not given the opportunity for someone to at least sit down and explain things to me so that I am not searching the world for help. It’s almost 2 years straight every day I research and try to find help. Anytime I had a visit set up like with New York University, etc. after they spoke with my PCP they canceled the appointment with me with me because my PCP told them they did expensive testing and they think I’m crazy. Well, that’s just nuts. These people are covering themselves from misdiagnosing me for years and my daughter. And I don’t even care about any of that. We just want help.