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Thursday, June 14, 2012

Where To From Here? Lyme Desperation

It's funny how a major explosion in your world can make a moment of such clarity, everything slows down, and your senses deepen.  I could hear songbirds, feel the grass under my knees, smell the peonies and honeysuckle, and taste their sweetness along with the moisture in the air.  Every flower, shrub and tree came sharply into view, the explosion too deep for tears to blur my vision.  I willed myself to keep breathing, there on my knees, in the middle of our blossoming garden.  Keep breathing...and ask for help, my hands gripping the Mama's hair.

It seems the government wants to kill my daughter.  The news slipped in quietly, a postcard in the mail with small writing.  I almost threw it out as junk mail...then I looked closer.  Turns out to be a love-note from Medicaid...actually...more like a break-up note.
"As of July 1st, 2012, Medicaid will no longer pay for prescriptions from doctors who are not contracted with Medicaid."

"Don't worry," said her doctor, "I'm investigating what I can do," he told us, on our last visit, in May.  So, we didn't worry...we thought he would do whatever he needed for his patients who are on Disability and Medicaid.  Yesterday, he wrote an email to my daughter, telling her he would not be signing a contract with Medicaid, and she needed to find another doctor, to continue ALL her many, many meds.  You see, Medicaid could sue him...for not following the 2006 Lyme Guidelines, linked from the CDC site.  Dr. Jemsek was sued by Medicaid for $1.4M...lost his practice, though he has started again in a different state, a true Lyme Warrior, willing to fight for his patients, at his own personal cost. 

All this is, sadly, the business of medicine stopping the art of healing.  I don’t quite understand my daughter’s doctor’s fear of being sued, when he has explained, to the satisfaction of the Board of Health, his treatment of tick-borne illnesses.  It took a prompt from my daughter for him to contact Medicaid, one month after her visit, just over two weeks to go until the cut-off.  His promise to stay with my daughter, all the way through her illness, is null and void.  Again, all misery leads back to the outdated 2006 Lyme Guidelines.  The insurance buck stops there, though we are light-years ahead of those guidelines now.

These 2006 guidelines are what we've worked so hard to try and get struck from being endorsed by the CDC site.  In the years since they were put there, evidence has piled sky-high against their assertion that there is no such thing as chronic Lyme, that patients are cured with 28 days of IV antibiotics.  That has been proven wrong, with the continued infections killing many patients, and taking away the quality of life for those surviving.  To put this another way, imagine an AIDS patient, without treatment and facing prejudice every day; quadruple the number of AIDS patients in America today, and there you have Lyme.  Their guideline given to Infectious Disease doctors, for chronic patients, with multiple infections, is to ignore them...DO NOTHING.  That's their treatment plan for my daughter, and we've seen what doing nothing does.  Every time she goes off antibiotics, she slides backwards at an alarming rate...put her back on, and there she is, her mind brilliant. 

Why are those Lyme Guidelines allowed to stay on the CDC site, when the same site has, almost daily, posted new studies and peer-reviewed articles that ring alarm bells about Lyme as an "emerging" disease, along with the many deadly co-infections (my daughter has two, babesia and bartonella, along with Lyme) that the IDSA (Infectious Disease Society of America) panel now says they didn't know about, complicating treatment, why do they stay up?  Why aren't they posting guidelines from an ILADS (International Lyme and Associated Diseases Society) panel?  ILADS has the new research and peer-reviewed articles, is training as many doctors as will sign-up, to get on top of this mounting plague...why are they not given space on the website of the Center for Disease Control, when they so obviously know more, and DO more for the suffering patients??  They call for more doctors to train and this, let me tell you, is the field for those determined to save the world.  Come and join the heroes who are working against a silent plague, brought to you by ticks...ticks on deer, dogs, cats, mice, rats, humans, squirrels, lizards, snakes, tortoises...and birds.
Engorged tick attached to a bird

Yes, birds...the true Trans-World Airlines for these little arachnids.  Follow every migratory route, and you will see the "airborne" spread of Lyme.  That a panel of fourteen doctors can stop treatment for thousands of desperately-ill...and I do mean desperate...patients, is egregious, especially while they continue to make money on the lie, that chronic infections don't exist, not there, not listening...lalalalalalala!

My daughter was lucky (?) enough, after suffering for eight years (that's 2,912 days of agonizing pain, malarial-like sweats and chills, paralysis...and three more pages of symptoms) to find a Lyme-literate physician who, seeing her in a wheelchair and completely compromised, took her on as a patient, pro bono.  He found Medicaid just too difficult to deal with.  My daughter, on Disability that pays her less than $700/month, was blessed with this big-hearted, big-money doctor.  With him, and long-term antibiotics, she was able to get out of a wheelchair!  In those previous eight years, bacteria grew in her body to the point where antibiotic treatment is maintenance, and not a cure.  But she'll take maintenance, thank you, while researchers try for more.

Can you imagine, you're below poverty level and you find a doctor who will treat you, for free.  You have the comfort of a support system and medications, and then Medicaid decides to find their missing money, in your treatment.  Never mind where money bleeds out in Medicaid fraud, and on salaries for those comfortable in their positions, on grants and misusing funds.  No, go directly for the patient.  What rights do the poor and the sick have in this country?  Understand me here, the number one cause of death, in Lyme patients right now, is suicide.  They give up hope. 

Number two…is stopping treatment. 

They have been abused by the system that feels "comfortable" (a term doctors like to use) in denying their illness, even when they sit in front of them in wheelchairs, having seizures, irregular EEG's, and painful spasms, then forgotten until it's time to be abused again, by a government that swore to take care of the disabled and disadvantaged.  Why do they consistently look for their missing money, in pockets that are less than empty?  The pockets have worn away.  Here, in our fourteenth year of fighting this damn disease, we're worn.  As my daughter said last night, "We're up a creek, without a paddle."  I would carve the paddles, if I could find the doctors willing to be educated, if I could make someone understand that, to do nothing, is to allow a plague that will drain Disability and Medicaid Funds dry. 

Now we are left, because we were told not to worry, with just over two weeks to find a doctor/doctors who will take over the many prescriptions for the many symptoms, and will accept Medicaid.  On July 1st, barring a miracle, my beloved daughter's Lyme treatment ends.  God forgive you, powers that be, at Medicaid...because I can't.  The birds still sing, and flowers bloom, but our world is shattered, our belief in compassion flying through the air, just bloody bits, splayed with this news.


Anonymous said...

Just want to clear up one fact -- Dr. Jemsek (from the Under Our Skin film) was sued by his own insurance company that covered his practice (which I believe was Blue Cross Blue Shield) ..not sued by Medicaid. (I thought you had corrected that already?)


Lorraine Hart said...

Sorry, I corrected it in the first draft, but missed the correction in this copy. Yes, Dr. Jemsek was sued by his own insurance company. Thank you, Anna.

Anonymous said...

Have you contacted Patty Murray's office?

Mizu Sugimura said...

That might be a good idea Lorraine.

Lorraine Hart said...

We are trying to contact everyone we can, in order of priority. First, we need to get Anna doctors, to keep most of her meds steady. My husband, son, and myself are taking a three-point approach.

Oh what I wouldn't give for an Infectious Disease doc, who would break away from the company line, and actually look at the ILADS research and treatment of tick-borne infections.

Anonymous said...

My cousin in Oregon saw someone in Portland for treatment. Can you look outside the state?

Lorraine Hart said...

We can find Lyme doctors, but they won't sign a contract with Medicaid, therefore there's no money for treatment...which costs well over $100 PER DAY, which we just don't have.