Why Lyme Disease ISN’T Covered by Insurance

Ok, well…I should state that Lyme disease IS covered by insurance. Just not past 28 days of treatment. Why? The medical community is completely divided as to believing or not believing that chronic Lyme exists. Lyme is a political disease. Money. No one is really doing the research in finding a faster or better cure, and every time some one comes up with research about the disease, it is swept under the rug and often ignored. 


I suggested you to watch the movie, “Under Our Skin”, free on Hulu, but I bet you didn’t , did you? Don’t lie to me! Either way, it is a very informative movie and I highly recommend it. *Cough*Watch the Damn Movie* Cough*  This movie really gets into the politics of why long-term Lyme treatment is not covered by insurance, as well as share the stories of some people struggling with this disease. 


The IDSA, (Infectious Disease Society of America) is made up of a group of people and amongst them, many had a connection to insurance companies among other corporations and wrote a list of “guidelines” that the CDC has to abide by. Most of these people had a benefit to them, even when evidence was smacking them right in the face. IT’S ALL ABOUT MONEY PEOPLE! These people benefited by making up this set of rules, and were paid heavily for doing so. 


According to the IDSA, 10 to 28 days of doxycycline or amoxicillin is sufficient enough to treat Lyme if it is caught early enough. In more serious, late neurological cases, or lyme arthritis, 2 to 4 weeks of IV rocephin is sufficient in treating Lyme ( I was on IV rocephin for nearly 5 months). There has even been suggestion by the IDSA that a single “high” dose of doxycycine is enough to kill the borrelia (Lyme) bacteria. The truth in this is, that if you have a bulls-eye lyme rash, that this dose may be enough to get rid of the rash, but not get rid of Lyme itself. Myself among many, many others are living proof that this is simply not the truth. 


Then you have a smaller group of Doctors, that follow the ILADS (International Lyme and Associated Diseases Society), protocol, which would be a Lyme literate doctor. These Doctors go by symptoms, research, and make clinical diagnoses of the disease. They recognize that Lyme can be persistent, and often requires a longer course of treatment. This group of people acknowledge Lyme in a chronic form and have treated accordingly, but at a cost and many have gotten in serious trouble for long-term treatment losing their licenses and being sued to try to help people that are sick become well. Unfortunately, due to disagreeances in treatment, these doctors aren’t covered by insurance. You can always try to make claim, either way, but expect to be denied. 


NH amongst some other states recently adapted a law that allows long term treatment, it is just hard to find a Doctor that is willing and knowledgable. If some states are starting to adapt this law, wouldn’t it be safe to say the IDSA is wrong? Even having states beginning to turn this into law, it doesn’t mean the insurance companies are going to follow and start paying.


Unfortunately, all these medical schools are only teaching the IDSA/CDC protocol for Lyme, and I’m sorry to say but MOST, NOT SAYING ALL, doctors have egos.  Once they have their big fancy degree for medical school, that’s it. Degree in hand, no more learning. Once something is learned, a lot of doctors won’t accept anything different than what they were taught, even if evidence strongly suggests that what they were taught is wrong. But they do not want to hear it.  A good doctor is willing to adapt, learn and change what they are doing to help the patient. It is just hard to find a good open-minded one nowadays. 


I know so many, literally SO MANY people that have been to local doctors with ticks buried in them or tested positive for Lyme that were given a single dose of doxycycline and/or 2 weeks or so of doxycycline, at 100 mg , twice a day… which isn’t even a really a super effective dosage anyways as far as I know. I was on twice that dosage when beginning my treatment.  People have even gone to the doctors with the tick, and have been told that they were fine because they didn’t have a rash and sent them home without any treatment at all. 


So you see? The insurance companies of course will follow the CDC protocol, written by the people of IDSA, that benefited themselves  from the big corporations by writing this set of guidelines. The insurance companies aren’t going to pay for or accept long term care, it would cost them a fortune! $$$ And this is what a lot of the Doctors go by.

This has left a lot of people out there sick and unable to get the treatment they need. It’s sad. 


I will admit, some people are lucky enough to remain symptom free even having this short term treatment. I know of a few that have tested positive for the disease, did the short course of treatment were lucky enough to not have any symptoms come back. Everyone is different, maybe they did not carry any of the other co-infections, or  maybe they just have a stronger immune system so maybe it is not affecting them like it can affect other people. Maybe they didn’t have this disease festering in their bodies for years upon years without a proper diagnosis. Many people don’t even know they have Lyme, as many people don’t have all the symptoms. I know of a woman that tested positive over 5 years ago for Lyme as she went in for the test because her daughter was very sick with the disease. She has never had a single symptom and has never been treated.


I have been amazed at how many people since I have been sick, and since since I wrote my blog that have shared their experiences with me that they were not feeling well and never thought of Lyme, only knew about the highly inaccurate ELISA test so never thought it could still be Lyme, or tested positive for Lyme, got their “treatment” and still didn’t know why they weren’t feeling better, but now have an idea of a direction to go in.  It makes me so happy that my story may be able to help others that have been feeling “not quite right”, but like myself, took faith in my MD, who was completely wrong!  I wouldn’t necessarily say it was his fault, as they aren’t teaching people how to treat Lyme in it’s chronic form. Remember, according to the CDC and IDSA this disease is fixed/cured/no questions asked within 28 days of treatment. 


All I can say is, find a good doctor that acknowledges Lyme. E-mail me or private message me via Facebook if you are in NH, or anywhere really, as I can help point you in the right direction and would love to help anyone out. Just expect it to be expensive, and that insurance will not help you past their 28 day time frame.


Sources : CDC.com, IDSA.com, ILADS.com, Under Our Skin, lymedisease.org


2 thoughts on “Why Lyme Disease ISN’T Covered by Insurance

  1. Hi Kim, I love your passion and spirit here, just discovered today. I’m 48 and grew up in NH, no longer there. I’ve had symptoms of chronic Lyme for several years as well as epstien Barr , it knocks me down once a year for several months. I can NOT get any help!!!! I will look at ILADS but would love any advice.

    • I would start there, or join some FB groups..honestly.. I would just be wary though.. you only hear a lot of the bad. Remember, if you are healthy you aren’t sitting in support groups, you are out living life and not on FB 24/7.
      But I bet you can get some help!

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