WOW to Ignorance ~ Insurance Companies 101

An acquantance of mine called me recently upset that her health insurance company was denying approval for her to receive more then 4 weeks of intravenous antibiotic for Chronic Lyme Disease. She had finally, after 6 years!!!, been diagnosed with Lyme. Bare in mind, this lady went from being a mid-30's, very athletic professional, to being wheelchair bound in the matter of 4 years. I don't know about you but it's still astonishing that doctors actually questioned whether there was really anything wrong with her because tests seemed "fine". Even her 3 year old daughter knew there was something wrong when she told her "Go doctor mommy. Doctor fix you".

Back on track......I asked her to forward me her insurance policy so I could read the small print.

Policy states:

"Insurance Company" will reimburse for the use of intravenous ceftriaxone, cefotaxime, or penicillin G (for up to four weeks) for the treatment of chronic or recurrent Lyme disease. Prior authorization is required for outpatient, office-based, and home infusion services provided to members enrolled in our HMO, POS, and PPO products.

"Insurance Company" does not reimburse for the use of parenteral antibiotics beyond four weeks, as there is no evidence indicating that such use is beneficial in the treatment of chronic or recurrent Lyme disease. We also do not reimburse for parenteral (IV or IM) imipenem-cilastatin, ceftazidime, cefuroxime, vancomycin, bicillin, or ampicillin for the treatment of early or late disseminated stages of Lyme disease, as there is no proven role for the use of these agents. It is recommended that use of these antibiotics be avoided, too, as prolonged use may encourage community-based resistance.

I have changed the name to "Insurance Company" as my battle is not again this particular company but all health insurance companies I have come across. It's their overall lack of knowledge. Their amazing ability to deny the existance of an epidemic that is effecting millions of people around the globe. How is it that our government can spend billions of dollars on swine flu vaccinations (almost half which have expired and were never used) yet this epidemic of lyme is being overlooked?

How is it that people are paying tens of thousands of dollars a year, out of pocket, in order to receive the treatment they NEED in order to save their lives?

MANY people are SUFFERING from Lyme. MANY people are FINANCIALLY DEVASTATED from Lyme. MANY people have become DEBILATED from lyme. MANY people have DIED from Lyme.........

MANY PEOPLE JOINING TOGETHER CAN MAKE A CHANGE AND HELP DEFEAT LYME.......PAY IT FORWARD!

Lyme-Aid Music Festival 9/16/12

Just wanted to pass on the word:
Lymebuddies announce the second annual "Lyme-Aid" music festival to be held on Sunday, September 16, 2012. Time:10:00am - 5pm. Where: Thompson's Orchard. Please visit www.lymebuddies.com for more information :)

The Thirteenth Annual ILADS Lyme Disease Conference in Boston Massachusetts Nov 2012

The Thirteenth Annual ILADS Lyme Disease Conference in Boston Massachusetts

R.I.P. Bill Chinnock - Bruce Springstein E Street Band - Long Time Lyme Sufferer

Just a reminder that Lyme is effecting people everywhere......it does not discriminate against age, race, wealth or health.

Musician remembered as battler against Lyme disease
Boston Globe - Boston,MA,USA
Associated Press

LEWISTON, Maine --A music legend in Asbury Park, N.J., as a founding member of what became Bruce Springsteen's E Street Band, Bill Chinnock was also a legend among Mainers stricken with Lyme disease.

The Emmy-winning singer-songwriter had been waging his own battle with the tick-borne illness that can cause exhaustion and joint pain while leaving patients confused and forgetful.

"I don't know how he did it, but he always stayed so positive," said Jodi Ireland, who was devastated at the news that Chinnock, 59, committed suicide March 2 at his home in Yarmouth. "I can't believe he gave up," she told the Sun Journal of Lewiston.

Chinnock's manager said he took his own life. His sister blamed his death on the disease he had been living with for years.

Friends and family members gathered Saturday at the First Parish Congregational Church in Yarmouth for a celebration of Chinnock's life.

His elder son, John Chinnock, said his father lived the life he wanted and followed his dream.

As neighbors in Fairfield, Chinnock and Ireland both became sick in the late 1990s. Chinnock helped Ireland find a diagnosis for the crushing fatigue, headaches and numbness that plagued her.

"We realized we were both having a lot of the same symptoms," said Ireland, a dance teacher now struggling with a Lyme relapse.

Chinnock eventually saw a doctor in Connecticut who diagnosed his illness as Lyme disease. He called Ireland, excited, urging that she undergo testing that would show that she also had the disease.

"I will always feel that I owe him so much. He helped save my life," Ireland said.

Chinnock and Ireland went through treatment, including antibiotics, but some symptoms persisted. After Chinnock moved to Yarmouth several years ago, the two kept in touch.

More than 23,000 new cases of Lyme disease were reported in the U.S. in 2005, nearly 250 of them in Maine, according to the National Centers for Disease Control. If caught early, the disease can be cured with antibiotics, experts say, but those who go undiagnosed for years can develop chronic and severe symptoms that leave them bed-ridden.

"It's almost like a death every time you get sick again," Ireland said.

Constantly upbeat and unfailingly positive, Chinnock was a champion for the Lyme disease community in Maine. Like many Lyme patients, he had his ups and downs but always seemed eager to comfort others.

He advocated for greater public education about the disease and met with Lyme sufferers, recommending doctors and suggested treatments. Sometimes he simply ...

commiserated, a blessing to patients who felt unheard for so long.

"A lot of people knew Bill. He helped a lot of people get diagnosed," said Constance Dickey of Hampden, founder of the MaineLymeDisease support group on Yahoo and chairwoman of the International Lyme and Associated Diseases Society.

In 2004 and 2005, Chinnock seemed to be doing well. An herbal supplement had been helpful and he was working long hours on a new album, the first in years.

But when Chinnock called to check in with Ireland last year, he told her he wasn't feeling well again. That was the last time she heard from him.

Some Lyme patients now wonder how they can be strong enough to handle the waves of pain and fatigue if Chinnock, their champion, couldn't.

"This has been a huge emotional blow," said Dickey, the support group founder. "It has rocked the community."

But even as they grieve, Lyme patients say they hope Chinnock's death will draw attention to the need for research and education about Lyme disease.

"I bet that's what he would have wanted, too," Ireland said.

------

Information from: Sun-Journal, http://www.sunjournal.com

Bullseye Rash - Lyme Disease - only 20% of the time! Pictures of the Varying Rashes Caused by Tick-borne Illness

The first thing most people ask when they learn I had Lyme Disease is.......did you have a bulls eye rash? I, like the majority of Lyme sufferers and survivers, never remember having a bullseye rash but do remember other rashes which were later identified as being associated with Lyme and co-infections.


BULLS-EYE
Here are your "typical/classic" or should I say "actually known about or associated" rashes. As you can see they are clearly identifiable by the red outer ring, followed by a more natural colored skin and then the red center. PLEASE NOTE LESS THEN 20% OF LYME PATIENTS REPORT HAVING THIS RASH! Typically, doctors can identify this rash as a "Bulls-eye" and hopefully would immediately start their patient on a 3 months course of antibiotics (as this is early stage Lyme).

Unfortunately, even with this textbook rash, many doctors are recommending no treatment until a positive lyme titer is received, which could take months or never happen due to the tests being so unreliable.  

          



UNIFORMLY RED RASH
Next you have the unifromly red rash which lacks the ring or target appearance. These rashes tend to be oval or round in shape and have demarcated boarders.


 



Reddish Blue Rash
Some Lyme Disease Rashes can have a blue / purple appearance and at times are mistaken for a bruise.

  


Blistering Rash
Yet another form of a Lyme rash includes varying degrees of blisters and are frequently misdiagnosed as a spider bite. Many people believe that some people are more sensitive to lyme borrealis and therefore they have a more extreme reaction to the spirochetes.





Dissemintated Rash
This can be caused by multiple tick bites but is more likely to show that Lyme (spirochetes) have already starting traveling to the blood stream to other areas of the body such as the joints, nervous system and other areas of the skin.

            





www.medicinenet.com
www.webmd.com
www.lymemd.org
http://hardinmd.lib.uiowa.edu/dermnet/lymedisease2.html

Dr. Joe Jemsek Speaks Out........The Controversy of Lyme Disease and Modern Healthcare

Please take 10 minutes and watch this video! It could change the way you look at Healthcare and is a shocking reality of the controversy over Lyme Disease and treatment.

This video may take a few minutes to load.

Patience is a virtue :)

http://youtu.be/V-lHDA863TM

Additional Lyme Disease Blogs and Websites Worth Noting

I have received quite a few emails lately from people wondering what other blogs I would recommend reading that relate to Lyme Disease. Firstly, I think every single blog you come across has valuable information and different viewpoints. This list is by no means complete but here are a few blogs I enjoy and find informative:

Support Groups:
On Facebook:
https://www.facebook.com/groups/898434263564848/

Dr Zhangs Protocol on Facebook:
https://www.facebook.com/groups/114851025522851/


http://blog.redheadkelly.net/lyme-blogs/
www.lymerunner.com
http://lymemd.blogspot.com/
http://jmgarnet76.blogspot.com/
http://lymesentinel.blogspot.com
http://lymeactiongroup.blogspot.com/
www.sonyafightslyme.blogspot.com
http://lymediseaseresource.com/wordpress/
http://www.crazylyme.com/
http://lookingatlyme.blogspot.com/
http://lymepregnancy.blogspot.com/
http://bellspalsylymesdisease.blogspot.com
http://inthelymefight.blogspot.com/
Http://tiredoflyme.com

Also to note:
This website provides information on medical coverage options.
http://lymedisease.org/news/touchedbylyme/prescription_hope.html#comment-5406
www.jemsekspecialty.com

www.underourskin.com

Please check back as I will continue updating this list :)

Australian Man Dies of Lyme Disease and Babesiosis - Country Still in Denial

Please take the time to watch this video:

Australia Man Dies from Lyme Co-Infection:

Lyme Disease: The Untalked About Epidemic - Getting Diagnosed #lymedisease #lymediagnosis

It has been a while since I've updated my Lyme blog - partially due to being really busy but also because I, like many of you, get overwhelmed with talking about Lyme sometimes. It's one of those diseases that you happily know little about until it effects you or someone you care about. When I was sick I used to be on the Internet researching Lyme religiously. It consumed me!

No doctors could give me a definitive diagnosis. The "diagnosis" varied from doctor to doctor and specialist to specialist. Over the 2 years it took me to finally take matters into my own hands and see a Lyme Literate Doctor(LLD), I had been diagnosed with Multiple Sclerosis, Fibromyalgia, possible ALS (Lou Gehrig's Disease), Lead Poisoning, a Brain Aneurysm and the one that really sent my mind twirling was "Its all in your head. Your only in your twenties. You must be looking for attention because there is nothing wrong with you. You must just be going through a stressful time".

That coming from a highly respected "Blood Specialist" who never even looked at the results of my lab work before meeting with me just about sent me over the edge! But in hindsight, he was the ignorance I needed to take a stand against the medical community and their cookie cutter ways. This disease is the total opposite of text book and for many doctors, if its not "text book" they either don't know it or care enough to research outside the box. So they pass you on to someone else.

I was no longer willing to let them send me from doctor to doctor with no answers. I remember telling this doctor that I was convinced I had Lyme Disease. I told him I had set up an appointment with a LLD, had blood work sent to IGenex in California and was expecting the results with a week. He looked at me and laughed his narcissistic laugh stating, "Lyme?? There are very few diagnosed cases of that in Maine. If you want to go see a Lyme Specialist, you're wasting your money". I remember leaving his office frustrated, raged, embarrassed, deflated and yet determined to prove him wrong. And within a week........I did!

Firstly, I sent him an article released by a leading area hospital which reported that 88% of all deer ticks tested in Maine that year were testing positive for Lyme Disease. It doesn't take a genius to realize that if that many ticks in this area are infected, the number of people also suffering must be off the charts. So him telling me "There are very few diagnosed cases of that in Maine" - the only thing he was right about is people in Maine are not getting diagnosed properly! They are sadly written off or mis-diagnosed and over time Lyme becomes so debilitating they meet the criteria for another disease and the source is never treated. I can't tell you how many people I have met over the past 5 years who's Lyme has progressed to such a late stage that they were no longer able to talk or walk, required a feeding tube or were so psychologically effected that people had written them off as mentally ill. Its important to note that Lyme can demonstrate in so many ways!! It can range from all physical symptoms with some brain fog, to loss of motor control to a variety of psychiatric symptoms. Everyones body is "attacked" differently which makes this disease "The Great Imitator".

Secondly, the next week my lab results came back from IGenex and sure enough not only did I have Lyme Disease, I also has the co-infection Babesiosis (Babesia). So of course I forwarded the results to the so called "Blood Guru" - and not surprisingly he never responded. I can only hope he actually took the time to look over these things and awaken to this new untalked about epidemic!

So to anyone out there reading this........and I must say its astonishing to be followed in 12+ countries now.......Advocate Advocate Advocate!!! Sometimes we have to take matters into our own hands and realize doctors and specialist DO NOT KNOW EVERYTHING!