Saturday, June 1, 2013

What is Lyme: The Controversy

There is much, much controversy in the medical community regarding Lyme disease. I'm going to to my best to explain it you briefly.

**Please know this is just my understanding, which mainly comes from the Lyme documentary, Under Our Skin (info at end of post). I may have mistaken details as I am writing from memory (I did just rewatch it yesterday to write this post).


Many Lyme patients are misdiagnosed many times. Many have seen doctor after doctor after doctor trying to get a diagnosis.

Many doctors are not aware (or choose not to be) of Lyme symptoms, treatment, etc. You would think since it's so widespread it should be a requirement for every doctor to be. So why isn't it?
Shortly after Lyme was discovered, it became legal to patent and profit from living organisms. So the focus of most of the main researchers of Lyme changed, from gaining knowledge for public health and scientific reasons to profit. They stopped sharing the results of their research so treatment and better tests stopped being approved.

I mentioned in my last Lyme post that the current test for Lyme is only 50% accurate. That test it the original test for testing for Lyme. It has not been improved or changed at all. Everyone agrees it's bad, but no new tests are being approved. Another reason people are misdiagnosed.

Chronic Lyme disease. That's really the main argument of this mess. Does it exist or doesn't it? Any person with late stage Lyme, including me, will tell you that YES, it does exist. According to the IDSA (Infectious Diseases Society of America) guidelines, it doesn't.

Basically, according to anyone anti-chronic Lyme, Lyme is cured with a single round of antibiotics. That's possible, if the antibiotics are started right after the bite. Most times they aren't. After you have had that round, you are cured and no longer have Lyme. Apparently any symptoms after that are post-Lyme syndrome, and are either your body still recovering, are symptoms you will have forever from damage done, or are pains from everyday living.

Insurance companies are a big part of why the IDSA guidelines are this way. Antibiotics are expensive, esp when they are long term for Lyme treatment. In order to cut down the money, they got the Lyme research board, or whatever it's called to rewrite the IDSA guidelines in a way to state chronic Lyme disease doesn't exist so that they can deny coverage for treatment.

Back to the doctors. Most follow the IDSA guidelines, which also doesn't provide info on how recognize symptoms of Lyme. Those who do are called LLMD or Lyme Literate Medical Doctor in the Lyme community. If you suspect you have Lyme, you need to see LLMD. Please do not decide not get treatment or find out if you have Lyme just because of the controversy.

Doctors who treat Lyme are under attack, some have even had their license suspended or taken away. This of course sends the message to other doctors that Lyme is not safe to treat. So many avoid the subject or possibility all together. I've heard of people who know they have Lyme and end up in the hospital for it, doctors will tell them it's not Lyme and Lyme doesn't do that.
It's so sad. They fight over it, and those with Lyme suffer because they can't get the right treatment and get better. Can't we just focus on making people better?


Finally, I highly recommend watching Under Our Skin. It's documentary about Lyme disease and can explain everything so much better than I can in a blog post. Yes, it's a little bit long, but so worth it.

You can watch it:
Free with Amazon Prime Instant Video
Free on Hulu
Free on Netflix
More on Demand Options
Rent or Buy on Amazon Instant Video

If you're gonna be stubborn, and not watch it, at least please watch the trailer. Even just the trailer explains a LOT, including some of what I tried to above.


This is the final What is Lyme post. Thank you for reading and I hope you learned a lot!


  1. Your blogs were well written and provided lots of info I didn't know. I pray God will use your blog to help others learn and for those who suffer from this to know they aren't alone. Thank you for sharing your personal story. I pray God will heal you. Love you

  2. It amazes me beyond belief that you are only 14 years old. Your writing skills prove to me you are much wiser beyond your years. Thanks for all the info on Lyme Disease and I do plan to watch the movie you recommended. Thanks, Sherri


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