Thursday, August 1, 2013

Triple Whammy

Sometimes a patient doesn't see it when it is so obvious to others.  That's the way it can be with slow and steady progress. 

I have known this patient for 7 years.  When I first met her she was on death's door.  Her prior doctor had given up and told her there was simply nothing else he could do. I treated her for a time. There were some ups and downs with one life-threatening event. I certainly hadn't given up --  but one day she was gone. Like many other critically ill patients, who never give up and whose disease is relentless, she had made the rounds. She had seen three other well known doctors who had been unable to help her. Then she completed the circle and made another appointment in my office. She walked through my office doors about 4 months ago for the first time in as many years. She was in a wheelchair:  unable to walk because of weakness. Communications were difficult in part because of strange, what I call, chorea-form like, jerking movements about her face, head and neck. Like many other Lyme patients she exhibited strange, uncontrolled, body movements outside the realm of standard medical diagnostic groups. Other physicians invariably diagnose a psychological basis for the movements. 

But that was not the only reason communication was difficult. Her speech was severely slurred (dysarthric); she lacked adequate muscle control of muscles of her tongue and mouth making it impossible to enunciate clearly. To make matters worse, she was severely cognitively impaired. She lacked the ability to put words together in proper sentences. This is what we call aphasia. Her thoughts were scattered and very difficult to make heads or tails of. She looked sicker than I remember the last time I saw her.

When I see patients like her, now, I go down the short list of aggressive therapies which might help. First there is IV antibiotics. She had been on numerous drugs for many months without much improvement. Then I think immunotherapy. Getting it approved is the trick.

Lyme is a multisystem disease. It is also a multisystem, within a system disease. When it affects the nervous system it generally effects multiple components. The nervous system is extraordinarily complex, but following the KISS, principle, for the patient and myself, (Keep It Simple Stupid) I break down the nervous system into a few basic components. The central nervous system consisting of the brain and spinal cord. The cranial nerves, a dozen nerves branching  directly from the brain. And the peripheral nerves: everything that branches off from the spinal cord, including motor, sensory and autonomic parts.

The brain being the preeminent piece of the central nervous system (CNS) can be assessed with MRIs, PETs, SPECTs, other imaging modalities and paper and pencil tests. The autonomic nervous system is best assessed with a tilt table test looking for POTS. The peripheral nervous system has traditionally been evaluated by electrical testing, (NCV/EMG). But now I have another modality.

Her EMG test was normal but I still thought she had a problem with her peripheral nerves. I performed a skin, sweat biopsy test which looks for something called small fiber neuropathy.

The lab sent us a report saying it was essentially the worse looking SFN they had seen. Bingo. Her insurance company approved her for IViG, the best immunotherapy available.

Insurance companies will only approve the $10,000.00 dollar every three week treatment if you can convince them you have one of a limited number of progressive peripheral nerve disorders. This is not an easy feat.

The third item on my short list was HBOT, Hyperbaric oxygen therapy. I have written some about HBOT already and so far I am very impressed.

Now her treatment consists of 1) antibiotics, 2) IViG and 3) HBOT.

Today she walked into my office under her own power. Her speech was clear and easy to understand. Her eyes were clear and her thoughts were completely cogent.

This is not to say she does not have some other, very serious problems which we are working on, and expect to continue working on for a long time to come.

Today, she really didn't get it. She had no clue how far she has come.

Her transformation is beyond words, so far.

Incidentally, we doctors are all used to patients trying other physicians. I would if I were you. We expect this. You should never feel embarrassed going back to a previous doctor. The doctor is (usually) happy to see you back. We doctors do things differently. Sometimes one will have more success than another.

5 comments:

JT said...

Love your blog! I'm not as severe as the patient you've described but I've declined significantly and I'm concerned.

I've worked despite declining health and worked in a hospital clinical lab for the last 11 years. Left the clinical lab for healthcare IT years ago but a divorce, a dependent, etc. made me elect to work locally.

If you have a colleague you can recommend in the Boston or NH area, please let me know.

I hope to experience the same "miraculous" improvement that you've documented. I've waited way too long. I put other people/things before my own health. My brother did the same and he died June 23rd at the age of 58.

Lyme report: Montgomery County, MD said...

ILADS can provide referrals

Serena W. said...

Thank you so much for this post! I found the link through the Healing Well website. So glad she came back to you again. My insurance company didn't approve the IvIg because my tests were normal even though my Lyme titer is high. But I always wanted to try the oxygen method. I'm going to forward this to my doctor. Blessings to you and I will follow your blog!

JasonG609 said...

Lyme Debate in the NYT:

http://www.nytimes.com/roomfordebate/2013/08/11/deconstructing-lyme-disease

Lyme report: Montgomery County, MD said...

Thanks for bringing this to my attention.

it is great that they let Horowitz go first. Of course his comments were toned down. Palmer, a smug reporter, shouldn't be given a voice in this forum. Go Monica Embers. I have to admit. I couldn't bring myself to read the comments of Shapiro/Wormser or the CDC.