Friday, September 14, 2012

Under Fire

Physicians being under fire is not new in the Lyme literate world. I discovered this even before my  diagnosis.  When my husband and I were pursuing answers to this mysterious illness, we uncovered a doctor under investigation in North Carolina on our local news channel.  Shortly after my clinical Lyme diagnosis, we watched the documentary Under Our Skin (click to watch on HULU) including a Question & Answer session with the director of the film Andy Abrahams Wilson.  The documentary has several cases where Lyme Literate doctors were under fire during the time of filming.   This eye opening documentary shows how Lyme Literate doctors are scrutinized by others in the medical community which includes the medical board, insurance companies and other doctors.  

Skepticism is the questioning attitude towards knowledge, facts or opinions that are stated as facts.  Patients with Lyme Disease and doctors that treat chronic Lyme Disease face another problem in addition to the disease itself.  We face chronic skepticism.  As a patient, I am often questioned or criticized by the choices I make in regards to my treatments.   Physicians and nurses in the traditional medical community often raise their eye brows if I mention the words Lyme Disease.  People I know question whether I am choosing the right doctor and treatment because they've heard that Lyme Disease isn't this difficult to treat. My question is this:  How come every time I mention that I have Lyme Disease to someone they know someone  who "was very sick" or "almost died" from it if Lyme Disease is so rare?

It is such a puzzling phenomena that this illness doesn't seem to exist in the traditional medical community.  If doctors don't believe in the chronic form of Lyme Disease, why does the Red Cross have an official statement regarding blood donation?  The Red Cross states that they will accept persons with Lyme Disease if they were treated and the disease has been resolved and at least one year has passed.  However, those with the Chronic form of Lyme Disease are not eligible to donate (Official Red Cross Source). In addition, there are medical guidelines for joining the national bone marrow registry for Chronic Lyme Disease.  Fully recovered Lyme patients may register, but those with Chronic Lyme may not.(Official Bone Marrow Source)

If this chronic disease doesn't exist, then why is it listed that those with Chronic Lyme Disease can not donate blood or bone marrow?   It's common knowledge throughout the Lyme community that those with Lyme Disease should not register for organ donation in regards to transplantation. After intense research I have been unable to find an official statement regarding this; however, it seems to me that if scientists have found bacteria in the blood that is stored for donation (the Red Cross doesn't allow for donation for this reason) then it's shouldn't be a reasonable stretch that those with Chronic Lyme Disease should not donate their organs for risk of transmission.  It also seems to me that since our body are riddled with bacteria that it would compromise an already unhealthy individual. 

There is a disagreement between two sets of physicians. The physicians that are grouped with the Infectious Diseases Society of America (IDSA) state that Lyme is rare.  They suggest that Lyme only exists in the northern area of the United States of America and that Lyme does not need more than 28 days of antibiotics.  The physicians associated with the International Lyme and Associated Diseases Society (ILADS) have a vastly different point of view. The doctors are dedicated to the proper diagnosis and appropriate treatment of Lyme and its associated diseases (ILADS Source).  Did you realize that one tick bite can give more than one illness?  A few of these illnesses are Rocky Mountain Spotted Fever, Babesia and Bartonella, but there are many other tick borne diseases.  ILADS support physicians through research and education in order to advance the standard of care for Lyme and other tick borne diseases.  The two sides constantly butt heads.  One group benefits patients and the other group benefits insurance companies. 

The media spotlight of Lyme increases drastically in the spring time due to the rise of public awareness of ticks; however, the media speaks to physicians that have only been taught the basics of Lyme Disease.  The media just exposes the theories taught to them by IDSA trained physicians.   These are Lyme Disease myths, so to speak.  Generally, the public is told that Lyme is tough to get, but easy to treat.  They are told that a tick must be attached for several days in order for transmission to occur.  They also suggest that each patient with Lyme Disease will get a bulls eye rash.  The media doesn't even touch on the fact that the testing for Lyme Disease is inaccurate  The media outlets only have limited time to touch on Lyme Disease so the public is left uneducated when it comes to the endemic of the disease.  

The news stories on Lyme often infuriates Lyme patients. Media may share an "unusual" story on Lyme, but then in order not to cause widespread panic - they repeat that this is not the usual presentation and Lyme is hard to get and easy to treat.  The Lyme community maintains a level of excitement when hearing of mainstream media highlighting tick borne illnesses.   However, I always find myself a little leery as a viewer since I am typically disappointed with the lack of appropriate information.  They don't inform on other tick borne illnesses.  They also leave out recent theories that Lyme may be transmitted much quicker than previously thought, the inaccuracies of the blood tests and the Lyme communities thought that it may be transmitted by other vectors.  They rarely speak with true Lyme Literate Medical Doctors who can relay those facts or theories that Lyme patients presume are facts. 

The IDSA presents the community with guidelines for different diseases (IDSA Source).   The Center for Disease Control (CDC) follows the IDSA guidelines.  Insurance companies follow what the CDC thinks.  Therefore when doctors think and treat outside the IDSA Lyme Disease box, they are harassed by the traditional medical community.  Dr. Jemsek was the first physician I heard about being brought to the medical board regarding his treatment of Lyme Disease.  It was all over the news here in North Carolina.  Long story short is that Blue Cross Blue Shield (insurance company for those that do not know) did not think his treatments were appropriate for Lyme patients.  Unfortunately for his patients, our medical board agreed.  He lost his medical practice in North Carolina and subsequently suffered from bankruptcy trying to fight for his right to treat patients who chose his treatments.  He moved his medical practice to South Carolina and after a short while he was asked to leave.  He currently practices in Washington DC.

The only world renowned pediatric specialist in Lyme Disease, Dr. Jones, is another Lyme doctor under fire. Families come from all over the world to see Dr. Jones because of his mass knowledge of treating children with Lyme Disease.  His joy comes from making children better.  Yet, Dr. Jones had to fight for his right to treat.  Many physicians continue to fight for their right to treat.  Some of those had to give up practicing altogether which left their patients in dyer straights.  Currently, there is a new physician fighting for his right to treat.  This is scary my dear blog readers because, as I view it; the more LLMDs under fire, then the more difficult it is for those doctors that treat Chronic Lyme.  Dr. Jaller needs our support.  There was a petition going around on the internet, but it closed suddenly and no one else can sign it.  I must have signed it just in the nick of time.  After "signing," we could leave a note for those that read the petition.  My words were this:

"Physicians such as Dr. Jaller are needed in order to treat Chronic Lyme Disease and other tick borne illnesses. Too few practitioners are capable of properly diagnosing these tick borne illnesses. I was personally misdiagnosed for 12 years before being properly diagnosed in 2007 by a physician trained by ILADS. Dr. Jaller and Physicians like him should be commended, not condemned."

Friends, I urge you to support your Lyme Literate Physicians.  I encourage you to spread awareness of Lyme Disease. I have never had the opportunity to meet Dr. Jemsek, Dr. Jones or Dr. Jaller, but that doesn't mean their plight is any less important.  I also urge you to support each other.  We are all under fire all the time.  Skeptics are always out there.  Share this blog link with your friends.**  We should speak together now and I encourage us to speak louder than ever.  Our doctors should know they can count on our continued support and our Lyme friends* need to know that we all have their backs.  We need each other because there is strength in numbers.

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

*I would like to personally thank all of my Lyme friends that had a hand in helping me in researching and proofreading this article. Thank you so much for your dedication to the Lyme community.

** When you share this link on your blog, let me know via comment so I can visit yours.  :o}

*** This was posted on Lyme Aware:


darlabrown1 said...

Great job Jennifer...good info!

Jacqueline Butterworth said...

Brilliant site-lts of info-interesting about not donating blood!

Jennifer said...

Thanks Darla -- and Thanks Jackqueline. I appreciate your feedback.