Sometimes one has to speak about what they see - whether right, or wrong. This is a "medical" article from a untrained long time Lyme patient. As always, post or delete as appropriate, especially if you feel "redundant". I write to reach the unaware, not the educated in our groups. Thank You, MJ
WHY "LONG-HAUL" TICK INFECTED PATIENTS CAN CONSISTENTLY TEST NEGATIVE DESPITE HAVING ALL THE SYMPTOMS AND ILLNESS...
In these days of instant daily reports of horrific Covid-19 positive test results on the news, social media, and TV (Johns Hopkins daily tracking numbers) you never hear about the daily, monthly, even yearly numbers of the tens of thousands of newly infected LYME, Babesia, Relapsing Fever, Bartonella, and other patients.
WHY IS THAT? We are all around you, we number now in the millions, even the CDC is willing to estimate new yearly infections top 330,000 (please see their pages), yet no new accurate positive case numbers have been available for years (2017).
I have looked. Hither and yon, in and out, on small sites and the big medical publishing pages, state health departments and counties, national agencies and huge non-profit foundations.
NO DICE, SHERLOCK!
There are lots of valid professional estimates (by medical experts - unlike me - I'm just a "guess-timater" without training) but no consistently tracked and categorized statistics available.
And here is why - we still do not have an accurate testing or tracking program of the many (yes, friends... so many more than just Lyme) Tick Transmitted bacterial infections that cause what we call "Chronic Lyme Disease".
This doggone thing started decades ago. (Take your pick of theories - I was infected in 1968)
You would think, with these kinds of numbers, that we could keep track by now.
It only took a few weeks for us to start tracking Covid infections!
WE DON'T HAVE A TESTING PROGRAM THAT LOOKS FOR ALL THE BUGS! DID YOU KNOW? Quest Labs, Davenport Labs and others (most of many labs in the country that perform blood tests for LYME) only test for Borrelia burgdorferi bacteria - NOT Borrelia miyamotoi (Relapsing Fever), Rocky Mt. Fever, or any of the other multiple deadly strains of Borrelia sweeping the country. They probably could, but the standard medical protocol is to only test for one.
WHAT THIS MEANS - When someone who has been bitten by an infected tick (like a child) gets tested for LYME, they ONLY get tested for one bacteria (the notorious LYME one - B. burgdorferi) and NOT any others!
It is not the "normal" protocol to test for the presence of others.
Ah Ha, you say... Now you understand why we can be chronically ill for years (even fatally) and repeatedly test "negative"!
THEY ARE ONLY TESTING FOR ONE THING.
I hope and pray you will understand.
We need to fight for COMPREHENSIVE Testing of multiple Tick Transmitted bacteria. It is the CDC, the NIH, and the whole dang medical system that needs to move to normalizing Comprehensive Screening for multiple pathogens!
I have 4 in my blood. All of them - each one - causes progressive severe disease.
I am not even unusual... 50% of all LYME patients have multiple infectious pathogenic bacteria (as acknowledged on the CDC website).
THINK ABOUT THIS... the wonderful old guy or gal who used to spend a lot of time in the woods, hunting, fishing, logging who now has "alzheimers" or "dementia", or the socker, football, baseball player (even teens or older) who has that "unknown" arthritis or myalgia condition, or debilitating muscle wasting disease, or many others in your family or neighborhood who have "unknown" neurological disabilities - is it possible they might have a unconfirmed parasitic pathogenic bacterial infection from a tick bite they never knew they had?
What if it is not Borrelia burgdorferi (that they test for) but another one they don't test for?
Below is an article that lists the symptoms of some of these Chronic "Lyme" disease conditions.
Full disclosure - I am not endorsing Igenex Labs over any other one - I just like the simple clarity of this article, and they raise the question about other "bugs" and how most don't get tested except for B. burgdorferi.
Thank you so much for reading this important message. I hope there was not too much "Lymespeak", and you understand the gravity facing hundreds of thousands of children in America, and millions across the world.
Michael Judson
MUSICIANS FOR CHILDREN WITH LYME
Helping KIDS with Tick Transmitted infections world-wide.
* Author's note: It takes specialized testing to identify the many other bacteria causing these severe infections. Many conventional health insurance companies will not pay for these (even for children) and THAT is why we fundraise or promote non-profit foundations on our website, and in our posts, that help KIDS and their families. Thanks for supporting them! *
