How PTLDS and ACA Affect Lyme Patients: Part 1

Post Treatment Lyme Disease and Insurance Coverage

Very few Lyme patients appear to know that the Affordable Care Act (ACA) or Obamacare is written to give you health insurance coverage for persistent Lyme and all its complications. Learn about ACA’s legislative language that protects your access to care in this video interview organized by Kristina Petterson Bauer, the Director of Texas Lyme Alliance.

This is Part 1 of three videos on the topics of ACA coverage for persistent Lyme and complications, the medical fraud of Post Treatment Lyme Disease Syndrome (PTLDS), the new Lyme medical codes in the ICD11, and government accountability regarding the Lyme epidemic.

This interview discusses the relationship between the Affordable Care Act/ACA and Post Treatment Lyme Disease Syndrome/PTLDS for Lyme patients’ access to covered care with insurance companies. Lyme patients used to have covered care into the mid-1990s.

Our discussion explores what that was, how we lost it, and why.

Watch the next 2 videos (loading soon) for the complete picture and what we can do to improve access to covered care and treatments that work. Like our content by clicking the like button here, and subscribe to our channel. To support our work and visit both our Lyme related websites, go to… to learn more and make donations.



I am not a proponent of the ACA as it is unaffordable to most people.  All it has done is replaced one group who couldn’t afford health insurance with another.  I also simply do not trust our government to handle anything. I also do not agree with many issues within the ACA.  Health care is personal and there are moral issues involved and all should be given choices they can agree and live with.

On top of this, due to how the CDC/IDSA mishandles Lyme/MSIDS by flatly denying persistent infection and prolonged treatment, anything they handle is tainted with these suppositions.  In other words, all you will get through the ACA is the CDC/IDSA Lyme guidelines which have only gotten worse and more entrenched with time.

Medical insurance for Lyme/MSIDS patients is rife with difficulties as most insurance will not cover adjunctive therapy which can be just as important as antimicrobial treatment.  Patients pay thousands upon thousands out of pocket for a long, long time.  We spent over $150,000 out of pocket for the two of us over 5 years of treatment.  I don’t know what we would have done without a savings and investments we sold off.  This issue of money is a deep, dark vortex that extremely sick and cognitively affected sick patients must somehow deal with – on top of continuing to work to keep the lights on, eat, and pay for treatment.  It’s a quagmire for sure.  One I surely don’t have all the answers to. 

After going years without any medical insurance while we still had children in the house (yes, it was frightening) we finally heard about a “share-pay” program that isn’t insurance and that you can pick your own health care provider, that covers supplements and adjunctive therapy for a period of time including massage therapy, chiropractic, colonics, and much more that we found beneficial.  The only draw-back is it doesn’t cover pre-existing conditions so Lyme/MSIDS wasn’t covered for us, but our family now had coverage for other things.  It is also economical with fees ranging from $135-$560 per month.  (I receive no monies from this organization)  While this one is Christian based, I’ve heard there are similar programs that are not.  Thinking back to when we considered ACA, it would have cost us over $2,000 per month – hardly affordable.

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