Son complaining knees hurt. Is this PANDAS or Lyme or both

[lismom]

When my son told me today that his knees are hurting it didn't come as much of a surprise. His symptoms are the worst they've been in over a year. Tics are terrible. He looks sick. Eyes red. Tired. I just started him on 600mg of zithromax. Week 2. Something is happening I just don't know what. Could it be kicking something up? Is it going to be bad before it improves? The weird thing is just before Thanksgiving I did a weeks worth of 600mg. At the end of that week saw no improvement. Decided[probably stupidly] to stop. However, after another week or so everything went to 100%. At that time I had started some supplements like D3 and calcium, so I thought that this was the miracle. But it didn't last. Son went back down hill. So after Christmas is when I started the high dose again but not seeing anything positive yet. This is so confusing. I am going to test for lyme as well. Waiting for the kit.

 

Thoughts on whether knee pain is associated more with lyme or have you all seen this with PANDAS as well? Thanks, Kathy

Edited January 11, 2011 by lismom

[lyme_mom]

When my son told me today that his knees are hurting it didn't come as much of a surprise. His symptoms are the worst they've been in over a year. Tics are terrible. He looks sick. Eyes red. Tired. I just started him on 600mg of zithromax. Week 2. Something is happening I just don't know what. Could it be kicking something up? Is it going to be bad before it improves? The weird thing is just before Thanksgiving I did a weeks worth of 600mg. At the end of that week saw no improvement. Decided[probably stupidly] to stop. However, after another week or so everything went to 100%. At that time I had started some supplements like D3 and calcium, so I thought that this was the miracle. But it didn't last. Son went back down hill. So after Christmas is when I started the high dose again but not seeing anything positive yet. This is so confusing. I am going to test for lyme as well. Waiting for the kit.

 

Thoughts on whether knee pain is associated more with lyme or have you all seen this with PANDAS as well? Thanks, Kathy

Knee pain is very common with lyme. With lyme it usually is there one minute, gone the next. Often you will have pain in a knee and then the next time the pain is somewhere else-in another joint.

[lismom]

When my son told me today that his knees are hurting it didn't come as much of a surprise. His symptoms are the worst they've been in over a year. Tics are terrible. He looks sick. Eyes red. Tired. I just started him on 600mg of zithromax. Week 2. Something is happening I just don't know what. Could it be kicking something up? Is it going to be bad before it improves? The weird thing is just before Thanksgiving I did a weeks worth of 600mg. At the end of that week saw no improvement. Decided[probably stupidly] to stop. However, after another week or so everything went to 100%. At that time I had started some supplements like D3 and calcium, so I thought that this was the miracle. But it didn't last. Son went back down hill. So after Christmas is when I started the high dose again but not seeing anything positive yet. This is so confusing. I am going to test for lyme as well. Waiting for the kit.

 

Thoughts on whether knee pain is associated more with lyme or have you all seen this with PANDAS as well? Thanks, Kathy

Knee pain is very common with lyme. With lyme it usually is there one minute, gone the next. Often you will have pain in a knee and then the next time the pain is somewhere else-in another joint.

 

When he first had this the pain stayed more constant. Though he did have pain in other areas at same time. Does it migrate quickly or just vary depending on the person?

[lyme_mom]

This can vary a lot between patients. In our experience it is often hard to know whether it is Lyme or not in an adult because it is easy to blame knee or shoulder pain or ither pains on working out or doing too much. However I can tell you though that all aches and pains went away with treatment. If a kid has these joint pains I would be very suspicious of Lyme. You should review different lists of Lyme symptoms because he may have others you have not considered. I will post some links after I get my kids off to school. You may find links in the general info area of the Lyme thread.

[matis_mom]

When my son told me today that his knees are hurting it didn't come as much of a surprise. His symptoms are the worst they've been in over a year. Tics are terrible. He looks sick. Eyes red. Tired. I just started him on 600mg of zithromax. Week 2. Something is happening I just don't know what. Could it be kicking something up? Is it going to be bad before it improves? The weird thing is just before Thanksgiving I did a weeks worth of 600mg. At the end of that week saw no improvement. Decided[probably stupidly] to stop. However, after another week or so everything went to 100%. At that time I had started some supplements like D3 and calcium, so I thought that this was the miracle. But it didn't last. Son went back down hill. So after Christmas is when I started the high dose again but not seeing anything positive yet. This is so confusing. I am going to test for lyme as well. Waiting for the kit.

 

Thoughts on whether knee pain is associated more with lyme or have you all seen this with PANDAS as well? Thanks, Kathy

My son gets knee pain with every exacerbation. He also sometimes gets it just by itself. I don't know if it's Lyme, strep, or reactive arthritis. But my son has confirmed Lyme, so I would watch and journal when he gets those pains. Sometimes a mother's log is worth more than any test My son would get worse about every 30 days, very telling of Lyme.

[aidansmom]

I believe that I have seen joint pain on a list of PANDAS symptoms somewhere in the past but I think is more commonly seen in Lyme. I believe that my son has had knee pain but I also think he has also had pains in ankles, toes, elbows but not as often as the knee. I have a hard time knowing for sure because my son is extremely speech delayed and can't fully express things like this but my observation is that is trying to tell me about things like this. Interesting enough - I think the knee pain was one of the major symptoms the last time he had a major "PANDAS" exacerbation and then it resolved somewhat since. He just tested IGG positive for Lyme but I noticed the pain before I even thought of Lyme. I think Lyme can cause constant pain in one place such as the knees or it can migrate. It can vary from person to person and vary within a person from over a period of time.

[kimballot]

When my son told me today that his knees are hurting it didn't come as much of a surprise. His symptoms are the worst they've been in over a year. Tics are terrible. He looks sick. Eyes red. Tired. I just started him on 600mg of zithromax. Week 2. Something is happening I just don't know what. Could it be kicking something up? Is it going to be bad before it improves? The weird thing is just before Thanksgiving I did a weeks worth of 600mg. At the end of that week saw no improvement. Decided[probably stupidly] to stop. However, after another week or so everything went to 100%. At that time I had started some supplements like D3 and calcium, so I thought that this was the miracle. But it didn't last. Son went back down hill. So after Christmas is when I started the high dose again but not seeing anything positive yet. This is so confusing. I am going to test for lyme as well. Waiting for the kit.

 

Thoughts on whether knee pain is associated more with lyme or have you all seen this with PANDAS as well? Thanks, Kathy

 

I believe you can see joint pain in either. In lyme disease, joint pain is a primary problem that is often seen (from what I have read - perhaps others can correct me)

 

In PANDAS Joint pain is thought to be caused by immune complexes depositing in the joint. Immune complexes occur when an antibody attaches to an antigen (like a strep, or mycoplasma, or lyme, or anything else your body is fighting). In a short-lived infection, these immune complexes are removed from the blood. However, in longer-term infections, the body deposits the immune complexes in joints, causing joint pain.

 

My son had extreme joint pain prior to sinus surgery to remove a cyst last year. The joint pain went away after sinus surgery. He had joint pain again this year when his sinusitis was acting up. It stopped after a few days of prednisone (as did the sinusitis).

 

Your son may need an antibiotic other than zith. He may also need a combination of antibiotics. Do you have any ideas what the underlying infection might be? That will help to determine which antibiotics to try.