HVLDA Rally Speech

Jill Auerbach, Chairwoman of the Hudson Valley Lyme Disease AssociationI am one of you, who was undiagnosed. For me it was over a decade until I was so sick I thought my life was over.

As bad as the physical symptoms, the worst were those that affected my mind. I was emotionally irritable and I could not remember, or think. I did not know if a stamp went on the left or the right side of an envelope. Always driving a stick shift, when one day, I stepped on the clutch instead of the break and had no idea why the car was not slowing down! And that was in heavy traffic on 684, it was really frightening.

I had to leave my employment, and a year later was finally diagnosed. YEA, two aspirins and I’m better in the morning. Well,so I thought! After nine months of antibiotic treatment, well beyond the IDSA guidelines, I was finally able to return to work a productive human being again.

It was so difficult not just for me but for my family, and it changed much in our lives. Even now, I awake each morning to find out if I can think clearly or if I am in a Lyme fog with a hurting body.

Although everyone agrees upon the urgency of early treatment, too many of us end up with chronic disease due to delays in diagnosis and treatment.

It is the most prevalent vector-borne disease in the USA! Many tens of thousands of people are reported ill each year, and due to underreporting these people are just the tip of the iceberg! Additionally, the CDC admits that up to 20% are left with symptoms after treatment. And ILADS believes it to be much more than that.

The cost of this disease is staggering: insurance, doctor bills, loss of productivity at work, costs of schooling sick children at home by taxpayers, unemployment, and disability. As these sick people lose their ability to function physically, intellectually, and emotionally these additional stresses, even lead to breakups of families.

As a matter of fact, I just received the following in an e-mail:
“The fact that there has been no agreement on diagnoses, treatment, insurance coverage, and a host of other issues, leads me to believe that our government is NOT interested in solving this evil that is robbing the vitality and productivity of our citizens as well as bankrupting families. I also don’t see any of the major foundations interested prevention or a cure; we’d rather cure malaria in Africa.” And then asks: “Can you give me any answers or logic to any of the above?”

The science of Lyme and TBD is not yet answered. And the nasty fight goes on hurting patients, hurting the few physicians who are willing to risk their very livelihood and are under attack for the humanity of treating sick patients. People are sick and the IDSA turns their backs on them, by publishing guidelines that deny the existence of “Chronic Lyme”, I ask, is this ‘First Do No Harm?” No, it certainly is not!

In over thirty five years of known Lyme disease, the plight of patients has not improved; we still don’t even have a reasonable diagnostic test. The only things that have happened in that time are:
TICK numbers have increased dramatically, spread geographically, and infected humans and other animal with a multitude of virulent pathogens.

Each year it seems another is discovered such as the most recent, Borrelia miyomotoi, a member of the relapsing fever group! What is frightening is, this is the first known Tick-borne disease (TBD) infectious to humans where the mother tick passes this organism to some of the 2000-3000 eggs she lays, hatching tiny almost invisible infected larvae, which look like a speck of dust. Previously there was no concern about these miniscule and so numerous larvae. Only a small fraction survive to become a nymphs, the stage from which most people pick up TBD’s.

So what’s so concerning is, you can’t see them, they are very numerous and they carry disease!

People may be infected with B.miyomotoi however, there is no diagnostic test for it. Discovered in ticks in the United States more than a decade ago by Dr Durland Fish, our government refused funding for him to develop a diagnostic test as there was no proof that it caused illness in humans. It wasn’t until Russia proved human illness about two years ago, that any funding began. I ask you, could this B.miyomotoi be the reason why some patients test negative and/or have chronic symptoms?

Ticks are worldwide, ticks do not discriminate so it could be you or your loved one next. You do not even end up with immunity to Lyme disease. So, simply by taking an innocent walk, going on vacation, or visiting a park, etc. you can be nabbed over and over again!

SO, what can we do and why aren’t people being protected from infection and re-infection? “What’s the problem? Well it’s the ticks of course!”

When Rabies was a problem an oral bait vaccine was developed for the animals that were carriers. When Gypsy moths were destroying trees, pheromones were used to confuse them and disrupt their ability to mate. Etc. Etc. Etc. I ask you are trees more important than us?

Did you know there was research that would have prevented ticks from being able to remain attached to us? Yes, drop off so they could not transmit disease! Did you know the NIH discontinued funding this promising answer?

Do you know a pittance is spent on tick research to protect us? Ticks, these cesspools of infection are not even needed in the food chain. So, I ask, why has nothing been done to stop these ticks? Research is needed in this ignored field of science.

It is time and the time is now, Scream loud and clear, demand an answer, call your Congressmen and Senators, write to the governor, stay involved. PLEASE SIGN THE PETITION AT OUR INFORMATION TABLE REQUIRING THE DESTRUCTIVE IDSA GUIDELINES BE REVIEWED AND TO INCLUDE ALL THE SCIENCE.”

This is our fight! STOP the TICKS! STOP the DISEASE!

I look forward to the day when children can roll in the grass and the leaves as I was once able to do! They should not get sick by merely going outside to play!

Thank you for listening!