Friday, January 20, 2012

No box

In 2002 I didn't know much about Lyme. My patient suffered with a paralyzed diaphragm. He was in misery with every breath: only one lung could expand. A trillion specialist said he was a medical mystery. Idiopathic. Once I heard Gabe Mirkin say: Idiopathic means the doctor is an idiot and the patient is pathological. True in this case. My notes show I actually thought of Lyme even back then. He became one of those troubling patient, anathema to every primary clinic. So many complaints! fatigue, depression - at times suicidal, brain fog, memory loss, total body pain - the list went on. I was empathetic and used all the tools in my box - band aids. Somewhere along the trail I became "Lyme literate." Antibiotics helped a little. The diaphragm still wouldn't move and overall improvements were modest. In 2008 if finally sent off a blood sample to Clongen.Positive Babesia PCR. The PCR was positive!

In short, Mepron turned his life around. He could breath. Everything got better. He was even happy. Unfortunately, every time Mepron was stopped he crashed. Nothing else worked.

Recently,his employer suddenly cancelled Cigna. He was now pushed into Kaiser. He was told that his "Cadillac plan" had to go.

Today he came in just to lament.

He tells me the new Kaiser doctor mumbled something about about hindsight which didn't make any sense. The doctor told him there was no way he was going to prescribe Mepron for something "they" didn't believe in.

The doctor said he didn't know what a PCR is, and there is no box to check on the lab requisition to order a PCR. No Box. I had to repeat this over and over again to make sure I got it right.

The patient doesn't know what to do. He can't afford $1100.00 a month for the drug.

No box.

10 comments:

Donk said...

I've definitely noticed that my insurance carrier is getting "stingier" every year with benefits. Also noticed that my doctors are getting more reluctant to order tests. What is the cause/effect here? I wonder.
Kaiser has a very large network in this area. Hopefully your patient can find another doctor who will be more sympathetic about prescribing and testing for Bab.

LisaT said...

No Box.

What a perfect title.

It makes me cry a bit.

LYMEMJ said...

I know what he can do: IVERMECTIN, I even had to get it veterinary but because it is just $4.99 a tube that contains medicine for a 1,250 pound horse, which cut in very small doses for me, one once a week, could last me a couple of months, yes , very affordable, pharma won't like me breaking their business. Yes I know I['m talking about veterinary medicine but tell me if horses are ever denied treatment for parasites or Babesia? Thank God you opened your heart to him and gave him a "band-aid" to keep on, now he made you a great Dr and with this he saved many of us too! Note, the vet Ivermectin is very bitter,like Lyme!

glytzhkof said...

Ivermectin is pretty powerful stuff - doubt it is a long term solution.

GoodbyeLyme said...

Hey Doc,

Here are some lower cost anti-malarial herbs that have helped other Babesia patients:

http://goodbyelyme.com/free-articles/coinfections/drug_resistant_babesia_herbs

Unknown said...

This story is disgusting. This patients needs to present his medical records and threaten a lawsuit violating the recent laws that prevent discrimination against pre-existing conditions.

BTW, I live in CA and Kaiser is infamous here for being a Lyme denier. Kaiser patients with Lyme usually have to go out of network and pay out of pocket.

L-Gal said...

1700.00 at our pharmacy w/o insurance. Now, that's insane. Sometimes I don't know who to cuss out...insurance cos, CDC, IDSA or pharma. Alinia is nowhere to be found. Next, they'll regulate supplements, natural meds and homeopathics right off the shelves. Then what will the Lymies do? What about my 8 yr. old son?

worriedmom said...

stuff of nightmares....did everyone see the petition to withdraw the outdated IDSA standards from the NGC? Go to NatCapLyme or CALDA (forgot what their new name was).

Robin said...
This comment has been removed by the author.
kathyoc said...

Simple: Enula by NutraMedix.

This is what I used after Mepron did nothing. It works.

Start slow. Takes time to build up to a full dosage and a person may have to go above stated amount on the directions.