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Thursday, March 18, 2010

Text book

A new patient walked in: a youthful 29 year old female. She wasn't feeling as good as she looked. She suffered with diffuse, migratory muscle and joint pain. She had tingling in her hands, shortness of breath, night sweats, headaches and pain on the soles of her feet. Her brain was foggy: poor concentration, focus and slow processing. She asked me if I thought she might have Lyme disease. I replied: "My G-d, you are right out of the textbook." Then I realized: " Well no, there actually is no text book." One has to be written.

She had a tick bite, a small "seed" tick, 2 years ago. It was accompanied by a red rash, maybe 5cm in size based on her description. "It wasn't a bulls eye."

She saw her family doctor. He told her she was just getting old (29?), that's why she had the symptoms. I asked how old the doctor was. Ancient. She talked her doctor into ordering a Lyme test. The Western Blot showed 28 and 41 bands only. Not Lyme disease.

Her family doctor referred her to: a rheumatologist, a neurologist and an infectious disease specialist. She figured it must be one disease -- she only needed one doctor. Smart girl. An Internet search led her to Lyme disease and then to me.


bobcat said...

We may not be getting the full story (obviously), but it's surprising to me she didn't complain of fatigue. (or maybe she did)

Sometimes I see people that just have the musclo-skeletal involvement, but when people have that many symptoms, including shortness of breath and night sweats (maybe babesia?), and cognitive involvement, they normally have fatigue. Or perhaps I'm wrong.

Kara said...

So glad this young lady found you at this point!:-) Boy, I wish I had seen a doctor that had a clue about lyme disease when my symptom list read just like that. I was pretty text book.

I came across a symptom list I made for a doctor in 2002. The complaints at the top of the list are "bad headaches, very tight neck, exhaustion, muscle pain, vertigo, mild tremors, hard to concentrate, soles of feet extremely sore in morning, tingling on left side of face and head." The list went on for about 20 more symptoms -- he told me he really wanted to know about all my symptoms so I went for it! After looking at the list he said there was no way I could really have all of them or I would be dead.

So much for really wanting to know ALL my symptoms, huh?

LYMEMJ said...

What young lady? didn't you hear the ancient Doctor thought muscle pain, memory problems or mental fog were due to her age? If that is to a 29 year old why would I expect some care if I'm more than forty? medicine is now for newborns, the rest of us are just aging!!! But don't forget to pay for the consultation!
Happy for her she found help! Hurray!
Note: I'm ready to help in writing the "text-book" and translating it to various languages! Count on me, I'm not as "foggy" now!

Brooke said...

Kara- that's too bad. My non-LLMD neurologist figured out my Lyme because of my extensive symptom list and the fact that they were cyclical. I'm even younger than the patient in question. One year of having neuro-lyme was enough. I can't even imagine more than that. I did have a year's worth of docs who wanted to diagnose me as crazy though.

Anonymous said...

Whoa... "Smart girl". I guess we don't need a doctor to be humble, just one who knows what he's doing. This blog seems to be serving your patients well, but also perhaps your ego.

LYMEMJ said...

Smart knowing she should not go to thousands of Doctors but to one who would care; this or any other who dare... are there other???

Anonymous said...
This comment has been removed by a blog administrator.
Anonymous said...

I would like to retract my earlier comment. I find myself uncharacteristically and sometimes uncontrollably harsh, frustrated, and emotional. I’m just hoping this personality change is temporary. Please forgive me. I pray that you will keep doing what you are doing. You are helping many people.
PS: What’s with the Chinese porn? A new kind of therapy?

kenlee said...

The lyme community truly needs you.

I understand your wanting to see patients every 8 weeks; however, that truly makes it nearly impossible for some lyme patients that live so far away. I am one of those people. I need you. I have been treated by another MD for 9months and worse than when I started. Could you please reconsider and be more flexible? You could give orders for bloodwork, etc. to be checked by a PCP between visits. Please!

bobcat said...

There are Lyme doctors that do phone consults for patients so they don't have to come in for an in-person appointment every time.

You should try to find someone like that so you can still see a good doctor but not have to travel so much.

Lyme sites would be a good place to get recommendations.

kenlee said...

Can you recommend some lyme sites that would be helpful in finding a doctor to treat?

Lauren said...

Doc, check out this site on Vit D- what do you think?

bobcat said...

First choice for quickest response, specify in title you need phone consults:

Or you could try contacting ILADS, but I'm not sure if they would know which physicians do phone consults:

Or you could type into a google search--your state's name and "lyme support group," to find a local support group. Contact one of the group leaders and ask who they recommend.

Your first appointment would definitely NOT be a phone consult, but later on it's nice to have some appointments done by phone to eliminate the travel aspect.

I have moved a lot and lived in some really random, out of the way places since having Lyme, and finding a doc who does phone consults has saved me.

bobcat said...

Note, the phone consults don't "eliminate" the travel aspect, they just make it much less.

All of the doctors will require you to come for in-person appointments every once in awhile.

bluesdoc said...

Doc, check out this site on Vit D- what do you think?

Very long read.... time will tell... a lot of time, but many lymies have done very poorly on the MP. It was a nightmare for me. The model is impressive, but the clinical data is of the testimonial sort. The jury is not in, though folks on either side of the aisle have very strong feelings about their positions.

Unknown said...

Through Google Translate,
(,the Chinese message above is a porn promotion.

MJ said...

Here's a protocol of herbal products by an European Doctor who specializes in chronic illnesses and treats Lyme Disease. Note his protocol speaks about decreasing the load of "pathogens" and some medications are given for Lyme disease originated from "dental bacteria"??? It is not certainly a text book but could be added as a note to it?
Curious interesting different types of treatments to learn!

MJ said...

BIG HUG TO MITTENS95, being able to recognize the personality change is a huge step, plus knowing this Doctor is here to help is good for everyone too. Lyme affects everything but we have to help our selves on our way to recovery!!!! We'll win the fight, keep on the long term treatment and the anti-parasitics and anti-malarials and anti- bugs!! And do not change the Doctor!!!!! LOL!

Unknown said...

Wow - I have been through a year of getting bounced to every specialist known to man - Stress Test, Ekg, EEG, Monitor, 4 MRI and 3 CT Scans, 4 Ultra Sound and tons of blood tests. I asked for a lymes test in the summer and my Dr said - "why not." I was negative. This fall was the worst days of my life as I could barely stand up without getting sick or falling. My Symptoms are EXACTLY what you describe for this lady - all the way to the numbness on the bottom of my feet.

I was reffered to Dr Jaller and will be seeing him next week. FInally some light!