Friday, December 23, 2011

Heart Block

I first saw this patient 10 months ago. She had been ill with a disabling multi-system illness for 12 years.

She suffered with many symptoms, including but not limited to: profound fatigue global cognitive dysfunction, joint pains, swelling with effusions, weakness and numerous neurological manifestations. Lyme was suggested. She had a positive Western Blot (10 years ago) an IDSA doctor prescribed two weeks of doxycyline.

An LLMD subsequently prescribed over a year of antibiotics including mincycline and Ceftin. Many symptoms improved, except the over-powering fatigue.

She stumbled along for years off antibiotics, symptoms waxing an waning. Still, she managed to functioned as a high level executive.

As of late she was not doing well at all. When I met her she had been sidelined with disability for more than two years. She had no energy or stamina. She was unable to grocery shop or attend to the most basic activities of daily living. She had perpetual flu-like symptoms - a loss of sensation in her fingers and toes. She was stumbling and falling. Joint pain with swelling had returned. She had global cognitive dysfunction with episodes of syncope, confusion and disorientation. She could not speak well, think clearly or read and write. She was a shell of her former self.

Two months before an IDSA doctor refused to treat her because she had a negative Lyme test.

Despite the fact that she nearly died of complete heart block now treated with a permanent pacemaker. And - despite the fact the attending cardiologist suspected Lyme as the culprit.

I became her doctor.

After months of fits and starts with oral therapy she has no been on IV Rocephin for 3 months and tells me she is getting her life back. She is contemplating starting a new business after two years of complete disability.

Now she gets out of the house and can read. Now she can do many things unthinkable a few months before. She is still very sick with many persisting constitutional and neurological symptoms. Her stamina is poor. After brief activites she requires extensive rest for recuperation. But she tells me she getting better almost on a daily basis. Most of the improvement seen after 2 and 1/2 months of therapy.

Lets look at some labs. These are IgM Western Blot results from three different labs. Labcorp found a 23 band. Clongen reported a 41 band and a weak, 23% of control 23 band reaction. Stony Brook found: Bands, 18,37,58,66,72,93.

The 37 and 93 bands either one alone might be enough to make the diagnosis according to some sources. I do not know why there was no 41 or 23 band found. Different strains of Lyme may be used in different kits lending bias to which bands react.

I do not understand not treating heart block with a documented history of Lyme disease. The CDC test is a surveillance test. It has never been validated as a diagnostic test. And the notion that IgG bands show up in late Lyme is not substantiated in any literature I can find.

The highly vaunted NIH/IDSA studies of long-term therapy never included Rocephin use for longer than 10 weeks.

Happy Holidays

9 comments:

glytzhkof said...

Merry Christmas! Nobody can imagine what it is like to find a doctor who takes you seriously AND is able to help you when you have been sick for so long. Even if you don't get well, being taken seriously makes you feel human again. The patience and courage to keep trying, even if nothing seems to work is the best gift your patients got this year.

You once wrote that doctors should be allowed to practice their profession to the best of their abilities, and not based on insurance company bureaucracies and standards. I think that is a one sentence summary of the current challenges we all face with regards to health.

In a world where pharmaceutical interest seem to favor drugs that stabilize rather than heal in order to maximize income, we all depend on the humans who put humanity back into the systems that take us beyond human decency into cynicism and exploitation.

Thank you, and best wishes for a healthy, prosperous and meaningful New Year.

Tom King said...

I'm not sure if this is appropriate but I am need of some help. As a kid, I was bitten by a tick that left a red swollen place and came back on and off for several years. I can't recall any specific symptoms during those years except joint pain and possibly depression and insomnia. I was the only 5th grader I knew that couldn't sleep at night and wanted to not exist.

The joint pain has been the one consistent symptom that I've always dealt with. I can remember my dad fussing at me at about that time to stop popping my wrists.

And now, I have terrible joint pain, swelling and stiffness in my toes, ankles, knees, hip, back, neck and shoulder. I'm tired everyday. I wake up at all hours of the night. I have headaches, irregular heartbeat, and shortness of breath, aches, pains, muscle twitches, etc. I also was diagnosed as having low thyroid. Despite current normal levels, I still have the same symptoms.

I have been to rheumatologist, and several GP's. I am also being seen by an oncologist for a condition called hemangiopericytoma, which usually gets the blame in some way, shape or form. It's a rare form of cancer that is slow growing. I've had several treatments and surgeries and I get how it can be an easy scapegoat. However, HPC doesn't cause joint pain and swelling.

With all that said, I have often thought that all these symptoms could be linked to that original tick bite. As a kid, I could run like a deer but was always weak. Push ups and pull ups always were a problem. And my joints have always hurt.

For the past three years, I have been trying to find an answer for these persistent symptoms and have gotten nowhere. When I suggest lyme disease to my docs, they just look at me like I have two heads. Being from Kentucky, lyme disease is not even considered. I understand it's because there is a little to no reported incidence in KY. Yet, I still feel miserable and I still remember that red spot that tick left on me and that stayed on me for several years. And, I've tested negative for rheumatoid arthritis, gout, and mumerous other possible culprits.

I feel like I'm heading down the same path as this poor woman and many, many others. I need help. Any suggestions or resources you can suggest?

T9im said...

Tom:

I suggest going to lymenet and post that you are seeking a LLMD in KY.

Someone should be able to steer you towards a ILADs MD.

Tom King said...

Thanks!

LYMEMJ said...

Merry Christmas to you! Thank you for sharing this blog it has been my diary and my hope! God bless you and all your team! Maria in Fl.

LYMEMJ said...

I also "do not understand not treating heart block with a documented history of Lyme disease". Every day and every night living with the heart block with no treatment is literally a real p in the a.

Lisanne said...

Dr., I am posting a comment here, too, because the first comment I posted was on an older blog entry:

I am not sure how to reach you via email, or even what your name is, but I have been following your blog for the last year-and-a-half and find you to be very wise and informative. I have been struggling with Lyme Disease and now I believe I have neurological Lyme and some scary complications.

If there is a way you can contact me, I'd like to consult with you. I'd be happy to pay for your services. I live in NY.

Sincerely,
L
balancebodywork@optonline.net

Mrs Fab-ulous! said...

I came to you with a picc line and 2grams of Rocephin. I was lucky that I got an ID doc to put the line in despite only having bands 23 and 41on the lyme testing. The ID ditched me as a patient at 8 weeks because of the heat given for treating "non positive" lyme patients. That is when I came to see you (because I had been following your blog).

When I came to you I too was a shell of my former self. My main problem was 24/7 headpain. I lost my ability to even think, I couldn't be a mom (I had a newborn) and was forced back to work.

You continued rocephin, incorporated some zithro and upon my instance upped me to 4grams a day of rocephin. I had my line for 16 months. I stopped treatment in 2010.

It's 2012 and I still feel great. I have my life back. Because of you, I am a mom again. Because of you, I have my life back. No words could ever thank you enough!

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