Well I wrote my letter today in support of this bill that is coming up for consideration tomorrow in the state of PA....
November 8, 2004
To The Honorable M.P.,
I am writing on my own behalf in regards to the PA House Bill 1977. I support this bill and am praying that it is passed.
I have been acutely ill for the last six months with symptoms that range from severe gastrointestinal issues, to chronic and disconcerting neurological disorders that have affected my memory, cognitive function, short-term memory and eyesight. I was an active 34 year old with an exciting futureÖat the moment I am sick and frustrated. I am mostly homebound and unable to work.
I saw over 15 different physicians and was tested through LabCorp in North Carolina twice and Quest Labs in Maryland once for Lyme disease. All tests came back negative. I saw a leading Infectious Disease doctor at Johnís Hopkins and while he had a strong suspicion I was suffering from tick borne illness the lab tests did not confirm this.
I found information regarding a Lyme Literate Medical Doctor via a board on the internet. I made an appointment and was tested by a lyme specialty lab. The test came back positive for Lyme, Babesiosis, and Ehrlichiosis. I have started treatment with oral antibiotics and an anti-malarial for the Babesiosis as of last week. If I had not found this LLMD I would have continued to pursue a diagnosis and I would have continued to get sicker. I have been properly diagnosed which means I have a chance at a normal life again if proper antibiotic treatment is permitted.
Babesiosis is a coinfection caused by a protozoan and must be treated by an antimalarial drug. If I had not found my Lyme specialist there is a strong chance I would never have been diagnosed with Lyme, in the unlikely event that I had been diagnosed with Lyme, chances are I would not have known about the Babesiosis. Potentially I would have only been treated with antibiotics and the Babesiosis would have remained making me sick and also threatening the effectiveness of the lyme and ehrlichiosis treatment.
This doctor has informed me that there is a chance that my insurance company may not pay for more than one month worth of intravenous antibiotics. At this point I am chronically ill. Because I did not have a bullís eye rash and I did not remember a tick bite I was not able to catch this in the first 72 hours of infection. One month of antibiotics is not going to kill enough of the bacteria to deem me well.
I find it ironic that I received a letter in the mail from my insurance company after returning from my LLMDs office. The letter was an invitation to participate in their program for couples experiencing infertility. It is my understanding that this is very expensive treatment and somewhat experimental. As well, the result could be that I could conceive triplets that would require more insurance dollars to insure. So they are willing to insure me for this but not for extended intravenous antibiotic therapy that could give me my life back from an insipid disease?
Lyme disease and tick borne co-infections are multi-systematic diseases and infections. This bacteria and protozoan bore into the soft tissues of the body, the organs, and the brain. They can leave people debilitated for life, in wheelchairs, and unable to work. They rip peopleís bodies apart and go on to rip apart their lives. They have broken apart marriages and families. They have left people bankrupt financially. This disease is especially devastating when children get it. There is a lack of education in the medical community, as well as the general population in regards to all aspects of these diseases. There are many in pain. Please realize the necessity to support Lyme Literate Medical Doctors in their quest to improve the quality of their patients lives and save their patients from severe debilitation and possibly death.
Lyme and tick borne coinfections are second only to HIV in fastest growing infectious diseases. The only way to provide safe treatment for victims of these diseases is to support LLMDs since the medical establishment at large is grossly uneducated in regards to tick borne illness. I believe the cost to insurance companies in lack of education and proper diagnoses is far outweighing the cost they would incur if patients were properly diagnosed from the beginning and treated promptly and properly.
Thank you for your consideration. Please pass PA House Bill 1977.
I just looked it up on PA's General Assembly website and 1977 was enacted!
I guess this means that our insurance companies have to cover us as long as our doctors diagnosis us, whether it's by CDC standard or clinical diagnosis. Long-term antibiotics too! Our doctors licenses look to be protected as well. It's called the Lyme and Related Tick-borne Disease Diagnosis and Treatment Act. YIPPEE
I just looked again at the PA General Assembly website and I may have misread it. Now I'm not sure if it's completely done. I sent another note to my Senator and asked. Someone else should look and see what they think of 1977. I'll let you know when I hear back from the Senator.
Ok, I called my Representive's office and asked asked them to explain it to me. It had been sent to Appropriations and was re-reported to the House the other day. Therefore, it was NOT passed yet. It is scheduled for a vote this afternoon. Sorry about that. (Could they make it anymore confusing?)
Ok, I just checked the website to see if the house bill 1977 passed and it DID. It was amended and is currently being revised so I can't see what changed in it. So now that it passed the House, I expect it will go to the PA Senate. I already sent postcards to all 253 members of the PA House and Senate, but all of us in PA should take the time to write a letter (or e-mail) like the great one at the top of this threadto the Senator of our own district. This could help tremendously in HB 1977 actually becoming law in PA. I'll try to let everyone know what date it's scheduled for vote in the Senate just as soon as I find out. Sorry about the confusion earlier!