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mom-the-mom 08-29-2003 11:56 AM

swollen knee
My 14-year old son was diagnosed with Lyme on May 6, four weeks after he noticed his right knee was quite swollen. He did four weeks of Doxy, with a 5 day herx. The knee swelling has gone down some and he now has a good range of motion in the joint (he could not move it in May) - although it is still hot to touch and swollen.

I, as well as his doctors, would like to see the swelling gone. He is now taking anti-inflamatories twice a day as he has since the knee swelling was noticed. He sees an infectious disease specialist and a rhumatoid arthritis (sp?) guy. They have told me that one of two things may be going on - either we have caught the Lyme and it is taking 4 to six months for the swelling to go down - or we will need to have a course of antibiotics by IV to completely kill the lyme organism.

The new course of action is to have him take 30 days of anti-inflamatories and then a 1 week drug holiday. If we feel that he is significantly improved, he will continue on the anti-inflamatories for another 60 days. If we feel that he is not (the we being my son and I), he will start a course of IV antibiotics.

This is too confusing for me. Any help out there? Any experience with this?


ticker 08-29-2003 12:29 PM

Sarah, from what I understand, four weeks is not long enough treatment for Lyme Disease even if an infection is caught within two weeks of the bite. He probably needs longer treatment.

Was he tested for all the co-infections that ticks can transmit--Babesiosis, Ehrlichiosis HME & HGE, and Bartonella? Many people who have Lyme have one or more of the co-infections. It is very important to be tested for them.

I highly recommend you call Dr. Charles Ray Jones in New Haven, CT. He is the best Lyme pediatrician in the country. He sees patients from all over and has helped many children. The sooner he gets proper treatment, the better. Proper, early treatment may reduce the chance of long-term complications.

mom-the-mom 08-29-2003 12:45 PM

I discussed the four week protocol with our doctor and it was her strong feeling that the studies out of Yale indicate that four weeks is the right treatment. She quotes statistics that put 98% recovery rate for the 4 weeks. She feels that the evidence for longer courses of treatment are purely anecdotal. This is another confusing part for us - is my son cured or is he in the 2 percent.

Do you know anyone else in DC area?


ticker 08-29-2003 01:21 PM

Sarah, unfortunately many doctors and well-known medical institutions are following outdated protocols of 2-4 weeks of treatment. Please research this and correspond with other parents whose children have Lyme.

It is my understanding that an infection caught within two weeks of the bite should be treated for a minimum of 6 weeks. The antibiotics kill the bacteria only when they are reproducing, which is estimated at around four weeks. A six week course of antibiotics will cover one growth cycle in a new infection. A longer infection needs longer treatment. If symptoms are still present, further treatment is warranted.

Dr. Jones is the only Lyme pediatrician that I know of.

Beth C 08-31-2003 02:06 AM

Hi Sarah-

I'm new to Lyme and this nice messageboard. I've had a swollen knee for 1 mo. and stiffness in back knee muscle for almost 2 yrs and a tested negative for lyme. I've been on the Doxy for 3 wks and my swelling has gone down tremendously but still have the soreness. The doxy also cleared up a pain in the neck area also.

I wanted to also let you know, my neighbor who is a young boy of 14 is on the Rocephin IV for 3 wks now. He's had a swollen knee with joint pain for months since last Dec. His swelling has gone down, but still has the soreness.

I hope your son is feeling better. Hang in there. Hopefully it'll clear up soon...


lymes surviver! 09-13-2003 01:20 PM

Hi sarah, i was on IV antibiotic Rocephin for 21 days in 1999. it worked but i was scarred itwouldnt be enough. In needed to do it again for 4 days a few months later. I still have my blood checked and i always will. i have permenant damage due to long term exposure to the illnes for lack of improper medical treatment. I live in Belts*****,Md. it is between laurel and college park. The spot wher I was bit is still sensative to touch. Write down all your sons symptoms...everything inside and out keep them always
and watch for the return of them because it can come back from time to time. Know reacts the same way to this so each case is as indevidual as your D.N.A
The meds keep working for a while long after you have stopped taking them.

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