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Monday, December 1, 2008

Lyme: Zebra or Horse?

A new patient waited in exam room one. I fumbled into the room juggling the new chart and my requisite morning coffee. We introduced ourselves. Her serious demeanor dissolved into an ambivalent, nervous smile as I settled in my chair. She found me through a Lyme forum on the net. Several months of symptoms troubled her. Admittedly the symptoms were not severe, but they had persisted for several months. She had sought answers from her primary doctor, her ENT and a neurologist. No one had an answer. She googled her symptoms and did her cyber research. The same diagnoses kept popping up: Lyme and MS. The neurologist at her behest had ordered a second Lyme test- the definitive one- the Western blot. A phone call reassured her that it DEFINITELY was not Lyme- the test proved this. She wasn't convinced. She found me.

Now I was supposed to settle the matter. Always healthy in the past, this attractive young mother of 4 was now saddled with- dizzy spells, tingling in her fingers, tremors, a loss of balance and mild joint pains. She had no real fatigue or cognitive issues. Nonetheless the symptoms were bothersome. After much research and ambivalent contemplation she made a decision- she sat on the exam table across from me.

As always I asked questions, probing her history and related symptoms. I did my exam, the careful neurological exam which has become the cornerstone of my Lyme disease evaluation. I look for subtleties that would be called "WNL" in most exams. This means within normal limits- As interns we claimed it meant "We Never Look." As usual, I found various abnormalities. There was evidence of: cranial nerve dysfunction, upper motor neuron disease, peripheral neuropathy and a subtle tremor suggesting mild Parkinsonian features. I ordered the usually battery of tests to help confirm the diagnosis I suspected at this point.

She didn't know anything about Lyme she said. In reality she was already steeped in the world of Lyme land, with its own language and complex iconoclastic paradigms.

She asked THE question. "Do I always diagnose Lyme disease in patients like her. Do the labs always point me in that direction?"

She had already been to three doctors. I had spent over 20 years considering all the other diagnoses, the usual suspects, until I wandered down the rabbit hole into Lyme land. Here's the odd twist. As a physician I was taught that one must consider common disorders first when making a diagnosis. If a patient had a cough it was likely due to bronchitis, asthma or pneumonia. It probably wasn't Wegeners granulomatosis. Odd ball diagnosis were called Zebras. This came from the oft told metaphor: If you hear hoof beats in Central Park think Horses- not Zebras.

As far as the rest of the Medical world is concerned the diagnosis of Lyme disease as an explanation for her symptoms would clearly constitute a Zebra. And now, in the new reality I inhabit, any diagnosis other than Lyme (think common first) could only be categorized as a Zebra.


dogdoc said...

Doc- remember, we seek you out. In terms of infectious dz, this is common to start wih. Given the paucity of docs that can deal with this at all, those that do will have a new horse. Think its a horse anyway. At least you can clinically recognize the horse. That puts you ahead of the vast majority of the OD's (other docs) out there. In my family, you are batting 100%. The other neuros and internists and pediatricians - zero. I know it must be difficult to suddenly be presented with a whole population of us. Severe allergy cases used to be occasional for me. Now every other case I see is some chronic unresponsive skin or ear infection. I don't mind- I like those cases. They are satisfying even though they are complex. Medicine is an art. Sometimes you develope a subspecialty by accident just by having the feel for it. If you fix, they will find you. However, noone persecutes me for fixing stuff the specialists can't fix. That's a big difference.

Unknown said...

LymeDoc ~

Do you see older children, ages 12 & up? Thank you for your reply.

lymie said...

This is a self-selected population that finally finds a lyme doc. And these people have already gone thru a bunch of other doctors who didn't figure it out. Lots of differential diagnosis going on, but arriving at a lot of conflicting answers and no useful treatment.

For you, these cases are horses. For other doctors they are zebras. But maybe in highly endemic areas, they are really a horse in striped pajamas. And therefore not recognized.

choosingtohaveagoodday said...

Doc- I really enjoy reading your blog. I was wondering if you think that lyme and co-infections can not only cause Parkinson-like symptoms but the actual disease itself. I have had lyme for over 15 yrs before I finally found the symptoms on the internet and was fortunate enough to be told about a LLMD in my area and have been treating with abx for 3 yrs. My immune system seems to be very compromised and I think the reason why I haven't responded to treatment as much as I should have. I am getting uncontrollable muscle movement in my arms and legs at night with unrelenting neuropathy, I am not picking my feet up apparently and keep tripping myself, I have been told I have a blank stare, have been slurring my words occasionally and am constantly being asked what I said, I thought it was just my husband's hearing and becoming very irritated with him but now have had more and more people asking me what I said and so maybe it is me. My skin and hair have become extremely oily, a definite change on how it was even 6 months ago. I suppose all this can just be lyme and/or co-infection symptoms but I feel that with 3 yrs of treatment I shouldn't be getting such definite new symptoms. I am not expecting a diagnosis just your thoughts. I am a 50 yr. old female.

Lyme report: Montgomery County, MD said...

I see patients of all ages for Lyme. For routine care I see children over age 5. I used to see newborns in the nursery.

Lyme is associated with every neurological syndrome. It is one of the causes of Parkinson's disease.
This disorder may be associated with permanent damage to a deep area in the brain called the basal ganglia. Treatment should at least prevent the disorder from getting worse.

Oily hair can be caused by abnormal thyroid functions.

If a treatment course is not working then other options should be considered.

Rule of holes: If you find yourself in a hole the first thing you should do is stop digging.

Seibertneurolyme said...


Like that attitude!

Don't know what your personal opinion is regarding supplements, and most likely LymeMD will disagree with me, but I would suggest adding phosphatidylcholine as a supplement. Need a very high quality of this form of lecithin. Also, CoQ10 in high doses as well.

Hubby's first symptoms 7 1/2 years ago were Parkinsonian tremors. You actually mentioned one of the reasons he was told to go see a psychiatrist -- you said you shake at night. Parkinsons patients do not do this. The bed used to shake and wake me up before hubby was diagnosed.

Now he only has intermittent tremors and myoclonus and dystonia -- that is actually how I judge which treatments are effective. If something is going to help it causes G.I. symptoms and activates the neurological symptoms.

I have posted on LymeNet many times regarding hubby's symptoms and treatments. Do a search there with my memeber ID 6416 and the words tremor or Parkinsons.

The other possibility that comes to mind is mercury toxicity. Can also cause Parkinsons type tremors.

Parkinsons meds made hubby much worse. With him I think it is Bartonella, BLO, mycoplasma or the "mystery bug" which causes his movement disorders.

Staris said...

Seibertneurolyme - what phosphatidylcholine do you recommend/use?

Have you tried creatine and/or glutamine for your husband? Or resveratrol?

Seibertneurolyme said...


I feel the best phosphatidylcholine on the market for oral use is from

1 or 2 tablesppoons daily -- start with a smaller dose though. Hubby also did a very limited amount of the IV P.C. imported from Switzerland -- the P.K. protocol.

Hubby has problems with glutamine -- many neuro Lymies do. Especially in the presence of leaky gut or gastritis it can convert to glutamic acid in the brain. Glutamic acid is a neurotoxin. MSG can be problematic as well. For hubby, unless in minute doses, glutamine causes increased tremors, myoclonus and seizure-like episodes.

There have been times when protein supplement powders or amino acid powders cause similar reactions. Many have high glutamine/glutamate levels.

Hubby has taken creatine a few times but never in very high doses. I think if we could afford it I would be more likely to add in d-ribose to his supplements instead. He takes way too many expensive meds and supplements unfortunately.

Hubby does take resveratrol -- very helpful to keep B6 and/or 5HTP from converting to quinolinic acid which is another neurotoxin. He actually had a blood test showing this was elevated back when he was still searching for a diagnosis.

5HTP used to put him to sleep, but a few hours later he would wake up with tremors or seizure-like spells. The resveratrol stopped this. After a year or so he no longer needs the 5HTP as his serotonin levels seem to have normalized, but I have kept him on a low dose of the resveratrol.