https://www.lymedisease.org/sutton-tbdwg-lyme-denialitis/
“Lyme denial-itis” is pervasive. It stole my daughter’s childhood.
Oct. 29, 2020
Janice Sutton gave the following remarks to the Tick-Borne Disease Working Group on October 27.
As a critical care nurse for over a decade, I saved lives, using current–not antiquated–science.
But when it came time to save my own 14-year-old daughter’s life from vector-borne diseases, that very same medical community neglected, abandoned, and even abused us.
Our medical nightmare included over 20 doctors in four states, including a children’s Lyme clinic, where they even missed the tell-tale Bartonella striations across her spine. She had a constellation of symptoms, including everything from low grade temp to “sudden onset” psychiatric symptoms.
This medical nightmare included many misdiagnoses, which were costly in time and money.
I was even slapped with a “Munchausen’s by Proxy” misdiagnosis. It was truly horrifying.
At 21, we now know her diagnoses: They are Bartonella henslae, quintana, dysautonomia, autoimmune dysfunction, encepholopathy and optic nerve ischemia. Although her childhood was stolen, she is now in the good hands of the doctors that I call “The Galileo Doctors.” She is now able to attend college part time.
I now personally know at least 30 physicians who suffer from the medical condition that I coined, “Lyme Denial-itis.” It is systemic and pervasive.
I’d like to ask some questions
Why does this denial still exist, despite evidential research to the contrary?
This denialism brings me to the New York Times article, “My Son Got Lyme Disease, He’s Fine.” It was such a dismissal of those who are not fine and still suffering, like my beautiful daughter.
Why aren’t doctors following the Health and Human Services mission statement –”to foster sustained advances” in science and medicine?
ADVANCES MEANS JUST THAT….. ADVANCES! Not to get stuck in what is, or what was. For example, the CDC still refuses to admit chronicity. I think seven years qualifies as chronic! Don’t you?
Why are physicians ignoring a whole category of vector-borne illnesses? This has severe ramifications regarding the health and wellbeing of Americans.
Doctors are only as good as their tool boxes, so let’s give them the tools they need to better help people.
Tools like:
- Better physician education. Stop systemic Lyme Denial-itis
- To utilize TBD differential diagnostic algorithms
- Improve lab testing
- Protect the treating “Galileo Doctors”
- Insurance Reform
- Increase Funding for Research.
So just as we know that the world is not flat and the earth does revolve around the sun. let us move the needle forward with regard to endemic vector-borne illnesses. In order to have a voice, you have to have a willing ear. Thank you so much for listening to me.
Janice Sutton lives in Rhode Island.
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**Comment**
As the old statement goes, “You can lead a horse to water but you can’t make them drink,” we can’t force doctors to change. They need to be convinced that what they’ve been taught is inaccurate. This is only going to happen one of two ways: they will either experience Lyme/MSIDS first-hand (as often happens – making them some of the best doctors after feeling it acutely for themselves) OR they care enough to check their egos at the door and learn something new and be willing to admit they were wrong. In my experience #2 rarely happens. One thing’s for sure – Lyme/MSIDS isn’t going away and is only increasing in frequency.
While item #6 above looks good, unless we state we don’t want any more research with the moniker of ‘climate change,’ we will not see one cent going toward improving testing or treatment. This is such an important point to stress to both patients and advocates alike. The research dollars are scant and highly sought after. The Cabal continues to get these dollars and continues to do poorly designed studies OR they focus on the climate, which has been proven to be a mute point regarding tick proliferation.
The stringent criteria required for entrance into research studies of EM rash and positive serology is keeping the sickest out of the loop.
And we certainly don’t need any more climate data.
More patient letters sent to the TBDWG: https://madisonarealymesupportgroup.com/2020/11/06/the-proof-is-in-the-pudding-my-letter-to-the-tbdwg/
It is my opinion that working with the government on this is fruitless as 40 years of attempting it has proven. We need to do our own independent work utilizing researchers who are transparent and are willing to defy the accepted narrative. Those folks are few and hard to find. In my experience infected researchers find answers because it is much more than a pay-check to them.
Madison Area Lyme Support Group 