Lyme and Other Tickborne Disease

Lyme Disease is an epidemic.  The CDC estimates 300,000 new cases of Lyme Disease every year.  In reality, it is likely 10 times that.

There are 2 primary schools of thought about Lyme and Other Tickborne Diseases.  The difference ultimately results in the proper diagnosis and treatment of severely ill patients.

The Infectious Disease Society of America (IDSA) supports a 2 tier testing mechanism and no more than 28 days of antibiotic treatment.  The CDC acknowledges the IDSA guideline as the policy for diagnosing and treating Lyme Disease.

The International Lyme and Associated Disease Society (ILADS) stands that the current testing available for Lyme disease is severely flawed.  ILADS promotes a clinical diagnosis using test results as support for the diagnosis, but does not rely on a positive or negative finding for the diagnosis.  In addition, ILADS treatment includes long term, higher dose antibiotic use.  This practice is not accepted by the CDC specifically for Lyme Disease (although it is considered acceptable for other life altering diseases); therefore, it is typically not covered by insurance.  In addition, doctors who follow the ILADS guidance have been under scrutiny by the medical community and the CDC.  They are often faced with the potential of losing their medical license and incur hundreds of thousands of dollars in fees when summoned to a hearing to defend the treatment they provide to ill patients.

They still do it.  Why?  Because they are right.  It doesn’t take much research, even  for a simpleton like me, to figure that out.  I’ve provided links on this page to both the ILADS and the IDSA documents, in addition to several other resources that defend the ILADS reasoning.

The bottom line for me is this:

ILADS doctors are willing to risk their medical license and financial ruin in order to help ill patients that have nowhere else to turn

ILADS doctors have successfully treated thousands of patients

The IDSA gives absolutely NO guidance beyond the standard 28 days of antibiotic treatment for patients with lyme and other tickborne diseases.  Their explanation for the continuation of their symptoms simply falls to “psychological”.

My prayer is that one day soon, the ILADS guidance will be the standard practice and that existing research (and additional research as needed) will provide reliable testing so that everyone who has even a slight possibility for contracting Lyme can receive results they can count on and treatment they need.

God is still God.  God is still good.  To Him be the Glory.

 

 

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One thought on “Lyme and Other Tickborne Disease

  1. Shawn, I just found your blog (thru a convoluted process!) and just wanted to say hello.

    My name is Trisha, 59, I’m married and live in central AZ at 5100′ high. I have 5 grown children, 2 of my own and 3 step, and my older daughter had my twin granddaughters a year ago. Both my daughters live in NH. My husband Dan and I are both born again, Biblical Christians.

    I was misdiagnosed with fibromyalgia for 20 years! I know the timing because I kept a pic of a classic EM/bullseye rash in 1995. But I was never tested for Lyme back then, living in NW Arizona. The dermatologist was stumped.
    In 2005, my pain became so bad that my PCP sent me to a pain management Dr and he started me on strong narcotics, which I’m still on, 11 years now.

    Fast forward to 2015…my slowly declining health took my career as an RN, took many activities and hobbies, until all I could do was serve in the church office a few hours a week, and play bass guitar on the worship team once a month. And I was still able to shop, cook, small garden, go to church and small group Bible study, etc. Until April 26, 2015. I woke up with anxiety in my chest, and crashed from there, quickly becoming non functional.

    A few months later, still thinking I had fibromyalgia, I sought help from a fibromyalgia specialist and started his treatments. When I showed him the pic of the EM rash, he knew to order the Lyme tests thru iGeneX, and I came back “strongly positive for active, ongoing infection” (per my LLMD)

    I’m devastated….diagnosed with Lyme after 20 years…my LLMD is in Cal 450 miles away….but he is good, a board cert internal medicine MD who practices functional and integrative medicine and a Lyme specialist.
    LLMD started me on Samento and Banderol (that Ive now been on 6 months…he also started me on several things to boost my immune system) but I can’t get above 25 drops each twice a day without herxing. (Target is 30 drops) The co-infections testing thru MDL (80% accuracy) came back negative for everything except Epstein Barr active infection, he put me on Monolaurin for that.

    We also found out I have a genetic condition called hemochromatosis, which causes iron to be absorbed too much and it gets stored in organs, making my liver not able to detox as well. I had to go to a hematologist to get it under control.

    On Apr 27, 2016, my LLMD started oral abx, Clarithromycin 500 mg twice day. 4 days on, 3 off pulsing. I took it the first 4 days, and 2 days later I herxed so badly, It was literally the worst day of my life.

    Now I am so scared…. And overwhelmed. And discouraged. I talked with my LLMD and he ordered an abdominal ultrasound, to check my liver. And I asked him about adding some supplements to aid detox and he ok’d things like burbur and pinella extracts, NAC, glutithione, and activities like dry brushing. I already use Alka Selz Gold and lemon water.

    And he is really big on mild hyperbaric therapy, where they use the soft sided inflatable chambers (not rigid) and lower pressure (1.3 ata (atmospheres) vs. 2.4+ for rigid) and compressed air vs. 100% oxygen. The higher rigid ones can kill the spirochetes (and cause herx) but supposedly the mild one decreases inflammation, increases cellular health, etc. I’m skeptical, unsure if I can lay in this small cocoon thing for 1.5 to 3 hours a day for 2+ months. And to rent one it is $1500+/month. But he is really insisting it will help. I just don’t see the Lyme community posting much about it.

    Sorry this is so long! As you know, there can be much to tell in such a complicated illness!

    May the Lord bless you with feeling better this week, and healing!

    Thanks for reading all this,
    Trisha Brasher
    Email: trisha@brasher.com
    If you’d like to respond and/or keep in touch, I thought email might be better.

    Liked by 1 person

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