A Letter of Protest

My husband and i both have nueroborreliosis and have been searching in vain for proper treatment for years.He has been diagnosed with Rheumatoid arthritis , Gastric reflux , depression and herniated discs. I have been diagnosed with acute sinusitis , ADHD, Interstitial Cystitis, ear , bladder and sinus infections, upper respiratory virus ,TMJ and allergies.
This is not our first exposure to Lyme Disease and its co-infections - further testing has revealed previous exposure - it was the latest 'bite' that did us in and caused full-blown Lyme Disease.
We haven't been well since.

I went to one of the top Infectious Disease specialist in the DC Area and after having been tested for every disease known to mankind from syphilis to HIV- was told " i wish i could help you but i don't think it is Lyme Disease "- even though i tested positive on the Western Blot, had been treated for it by my Primary Care Physician and had ruled out all other possible diseases. My symptoms persisted. THE SAME SYMPTOMS but now they weren't Lyme Disease ??

It wasn't until i found a doctor who believed that chronic Lyme Disease exists that we received proper care and continue to get better after years of needless suffering .Now the IDSA want to take away our last hope. Their 'guidelines' for treatment influence doctors and allow insurance companies to deny treatment. They continue to become more and more restrictive every year and make Lyme Disease out to be a trivial , easily curable disease coloring it 'black and white ' in as science points more and more to it being a decidedly 'grey' and complicated disease to diagnose and to treat. Yet people continue to stay ill , even after the supposed'cure'. They are careful to use the word 'early' in regards to treatment becuase they know that anyone coming in after a few weeks DOES NOT get cured so easily. Treatment can take years . Some live with this disease for life. When we do find a doctor who wants to treat us , their hands get tied.

Why this stranglehold on Doctors , diagnoses and treatment for a disease that gets worse WITHOUT treatment and affects many thousands of men women and children every year ? Why the needless damage to our brains and nervous systems , our joints and our hearts ? How much worse does it need to get before anyone wants to help us ?

We are tax-payers , work hard, pay for insurance and were once and still are in many cases"useful members of society", yet we can expect no help.
This is shameful and needs to stop NOW. We , as citizens will no longer stand for the ignorance and special interest profiteering of the self-proclaimed 'experts' who refuse to face the growing evidence that Lyme Disease is an Epidemic in this country. The IDSA 's theories and guidelines need to be re-tooled and re-examined to reflect the current crisis that is Lyme Disease. This disease does not go away after 30 days , as anyone who continues to be sick already knows. Lyme disease persists whether the IDSA says it does or not. We are the living proof .And we demand justice for ourselves and our children. We will be silent no longer. And our numbers are growing everyday.
Hear us roar !