A Heartfelt Response

I received an email earlier today in regard to a blog I wrote involving chronic inflammatory conditions such as Lyme Disease and implications for eyes.  It was such a well thought-out commentary that I asked its author for permission to share it with you in full, without mention of names.  Here it is, in its entirety.
I wanted to respond to your excellent blog about Lyme disease but haven’t gotten a chance until now.  My wife has been suffering from chronic lyme disease which went undiagnosed until 2 years ago.  The issues mimic what goes on between optometry and ophthalmology when it comes to vision therapy/functional vision care.
There are a group of Lyme literate physicians who treat chronic lyme.  These physicians come from many specialties.  My wife has seen doctors that were originally rheumatologists, infectious disease, and even a psychiatrist.  They are particular in testing not only for lyme but also the coinfections that mimic lyme and in some instances create worse symptoms. They are also particular about the type of labs they use to analyze the tests. These coinfections are more difficult to treat and are the problems in most cases that don’t respond to the standard treatments.  Most of these lyme literate specialists have no hospital privileges.  The reasons for this are that some have been scorned and vilified by the main medical establishment who don’t recognize what they do.  Some chose to have no privileges because they don’t want to be bothered by having to run to the hospital when one of their patient’s is admitted.  Many of these doctors are rogue in the sense that they do their own thing and are busy enough, making enough money where they don’t have to be bothered.  Almost all of these doctor’s are outside of the medical insurance system, setting their own fees which tend do be on the very high side.  Some also make money by having labs that they use for routine blood work and since many patient’s are on IV antibiotics for treatment, most also run the infusions and supply compounded medications from their office.
The standard CDC protocol for Lyme was written by a group of infectious disease doctors with ties to the insurance industry that determines coverage for this condition.  Similar to the the ophthalmologists line that there is no proof that vision therapy is effective in treating anything other than CI, the white paper for Lyme stated that there was no such thing as chronic lyme and that there was no proof that the treatment the lyme doctors were using worked.   What this has done is made it difficult to get insurance to cover anything related to the diagnoses of lyme beyond the standard 1 month treatment with doxycycline.
This has left patients with Lyme in the same twisted condition that many of the patients we see who have been told by OMD’s that their problems are either all in their heads or that they are lazy.  The difference is that behavioral optometrists generally act as advocates for their patients.  There are offices like mine who do accept some insurance for therapy or offices like yours that don’t, but still try and help patients with getting out of network benefits.  MDs are MDs and the Lyme doctors are no different in temperament from other MD’s.  They generally couldn’t care less whether their patients can afford their care or whether they are getting covered for it. 
I appreciate your drawing attention to this and I can assure you that you’ve only touched the surface here.

One thought on “A Heartfelt Response

  1. “CDC protocol for Lyme was written by a group of infectious disease doctors with ties to the insurance industry that determines coverage for this condition.” Makes you wonder who’s really running the show, doesn’t it? Grrr…

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