Expert: Carol - 8/13/2009

Question
I worked as a landscaper last summer and had exposure to tick areas. I now have certain symptoms which sound like lyme disease. In the last year, I have had joint pain in both elbows and forearms, my (right side) neck, left hip, and left knee. These symptoms come and go...they are very random, except for my left knee which has been quite painful for 7 months. I play softball, so I thought it was a sports injury. I went to an ortho doctor and he x-ray'd it and told me I had arthritis and gave me a cortisone shot. It helped for a couple weeks, but now I have the pain again. I can't bend my knee fully due to the pain. I never had other lyme symptoms such as bulls eye rash, fever, headaches, etc., only the joint pain. Should I get a blood test for lyme? Thanks.

Answer
Hi, Gerry...

Your question is a tough one...not tough to answer but tough in respect of what you should decide to do.

First, you should know that the tests for Lyme are notorious for yielding false negatives. Lyme is ultimately a clinical diagnosis made by a Lyme specialist based on bite history if the patient recalls one, history of symptoms and exclusion of other diseases. You can have a flaming case of Lyme disease and still have a negative test result in which case no MD will administer treatment.

As far as a bite, rash, etc. I didn't have any of those. I just started developing mysterious symptoms which got more bizarre as time went on over the course of two years. I would later learn that less than 50% of people get the rash and the tick is so small it often goes unnoticed. Also, fleas, mosquitoes and other bloodsucking insects can carry this bacteria.

Also, I always warn folks about co-infections. These are other organisms transmitted at the time of the bite. They share many of Lyme's same symptoms BUT they do not all respond to the same antibiotics. Doctors know nothing about them.

In light of the fact that you have joint pain (which I assume you cannot attribute to any other cause) that comes and goes in other joints and not just your knee would be certainly make me wonder if you do have Lyme.

Here's what you could do...have a Lyme test by your MD and see what happens. In the meantime, you may develop more clearly defined symptoms in which case I'd advise that you find a Lyme specialist for treatment. MD's typically treat with only 2-4 weeks of doxycycline. Lyme specialists treat more aggressively using an assortment of antibiotics and they also test for co-infections. Due to the amount of time you suspect you may have been infected, you would need the more aggressive treatment.  The choice is yours.

To find a Lyme specialist, go to www.LymeNet.org and register. Click on Flash Discussion and then on Seeking A Doctor. Post there with your city and state and someone will email you privately with information. There is a policy not to post doctors' names on the site due to privacy issues.  You will see LLMD a lot on the site and that stands for Lyme-literate MD.  They are few and far between so be prepared to travel if you find one.

You can also go to www.lymediseaseassociation.org and click on the doctor referral button to the left. It requires a zip code to generate referrals.

All Lyme specialists are not created equal so I would advise that you try to get feedback on any doctor#s# you choose so you won’t waste precious time and money. As with any  doctors, there are some you’d want to avoid even if it means traveling farther.  Go on www.LymeNet.org and click on Flash Discussion and then General Support. Post something like: “Anyone see Dr. G in Wisc?”   Again, there is a policy not to post drs’ names on the site due to privacy issues and fear of harassment by mainstream medicine for treating Lyme patients. If you post the last initial and location, they’ll know who you’re talking about.

If you or anyone who reads this do not have insurance and/or cannot afford antibiotics,  see www.needymeds.com.  Apply even if you do not think you qualify.

For the entire Lyme and Co-infections Treatment Guidelines, go to http://www.lymenet.org/BurrGuide200810.pdf


Good Luck and let me know if you need anything else...
Carol