Lyme disease is in the Infectious Disease doctor category. When I first received all my results 10 years ago, I tried frantically to reach out to 25 DIFFERENT Infectious Disease doctors. My neurologist and cardiologist ALSO sent referrals because I was CDC positive for Lyme. NONE of them would let me make an appointment, I mean every single one of them said either one of 3 things...
"We aren't allowed to treat Lyme"
"We can' see you in our office, yes we take your insurance but we aren't allowed to see you"
"Sorry, we can't treat Lyme"
Even my doctors didn't understand why they would reject. They would not allow me to even come in the office. They wanted nothing to do with someone diagnosed with Lyme.
THIS IS THEIR AREA OF MEDICINE!
So I vent this because a few years ago, my primary insisted on trying to send me to Stanford and UCSF Infectious Disease. I told her to feel free but I warned her that I already tried many and that Infectious Disease doctors seem to not want to even try to help or learn the current science or treatments. She wanted to try. Sure enough, they REJECTED her referral. Now keep in mind this was many years ago, but this is what people with Lyme face. My primary was offended by it too.
How is this not reliving what AIDS patients went through so many years ago? Just because you don't know how to help us, doesn't mean you pretend we don't exist. They learn about it in medical school but not how to treat once it's missed for years and goes chronic. Most of us were not diagnosed in time. (See here: https://www.riseabovelyme.com/post/average-time-for-diagnosis )
It takes brave courageous doctors that take their oath seriously to come together and try to figure this out for all the people that suffer. I am thankful to Lyme Literate Doctors for this reason. They stepped up.
All these doctors that reject us, honestly... I hope karma gets them and I hope their licenses get ripped from them one day. They don't deserve the title of doctor. Denying to help people with a disease like this just because you don't know what to do, is NOT an excuse. Cures are found by those that say "I'll try". They should be ashamed.
For the record I have CDC positive labs for
Lyme, Rocky Mountain Spotted Fever, Babesia, Bartonella and Ehrlichia. All of these are their category of medicine.
My hope is that one day, they will stop dismissing patients and take responsibility for a disease that has been hurting thousands upon thousands per year. Every year the amount of people diagnosed increases and when you add them all together, it is shocking to think how many are suffering.
Overall Infectious Disease doctors have the worst reputation for gaslighting patients. The worst stories I hear are when they sought help through an ID doctor. This is evident by the thousands of people reporting this in the groups. I want to note that there are a few, rare, Infectious Disease doctors that are now lyme literate because they see the huge problem that exists. Unfortunately they are few and far between. I commend those special human beings that opened their eyes and did the research to help us.
The best chance of healing and being taken seriously is to be seen by a Lyme literate doctor.
"And we expect there will be approximately 627,927 actual Lyme disease cases in 2024."
https://www.bayarealyme.org/about-lyme/lyme-disease-facts-statistics/
"The CDC increased its estimate of annual cases of Lyme disease from 300,000 to 476,000, based on insurance claims made. That’s a 58% increase in estimated cases."
https://www.lymedisease.org/cdc-lyme-disease-cases-undercount/#:~:text=It%20means%20that%20the%20CDC,considered%20low%20incidence%20states%202%E2%80%9D.
March 2024
https://www.lymedisease.org/cdc-number-lyme-disease-cases/#:~:text=Under%20the%20new%20criteria%2C%20the,2%2C817%20from%20low%2Dincidence%20jurisdictions.
Most recent estimates are of 476,000 new cases of Lyme in the US every year. Scientists estimate that two million people could suffer from post-treatment Lyme disease at the end of 2020.
https://www.globallymealliance.org/about-lyme/#:~:text=About%20Lyme%20Disease,-While%20Lyme%20disease&text=Most%20recent%20estimates%20are%20of,at%20the%20end%20of%202020.
"It’s estimated that there are 476,000 new cases of Lyme disease in the U.S. each year. There is a near 25x increase of annually reported cases since 1982. All tick-borne disease cases have more than doubled in the last 13 years. Cases of Lyme continues to outpace other infectious diseases in the U.S. by significant margins. In fact, there are 618% more new cases of Lyme disease in the U.S. than Hepatitis B, Hepatitis C, and West Nile Virus combined. This doesn’t even take into account the growing number of other tick-borne infections."
https://www.globallymealliance.org/about-lyme/#:~:text=Cases%20of%20Lyme%20Disease%20Are,GLA%20is%20doing%20to%20help.
DISMISSIVE DOCTORS
LYME LITERATE DOCTORS
AVERAGE TIME TO DIAGNOSIS
DOCTOR LETTERS
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