If this isn't lyme I don't know what it is!

[momcap]

I've posted about DS7 on here a couple of times, but I mostly post on the PANDAS board. I just wanted to give a little update:

 

We heard about PANDAS in the summer, and confirmed that with high ASOs and CamK 176. I had red flags about lyme, but his WB was negative. The doctor put DS on a month of augmentin and we had a raging monster for a month. Then 1 month of biaxin, during which DS was only slightly less berserk. By the middle of the month on biaxin he had a whole new set of physical symptoms: His arms and legs get a lacy/blotchy rash that comes and goes, especially when he's cold. He NEVER felt the cold before, and wears shorts year round (we live in Canada, it was below zero F last night). The whites of his eyes are now always pink. He has a dry hacking cough, especially when he laughs. Last week his elbow swelled up like a baseball and turned purple. It faded back to normal within 24 hours. His feet sometimes "can't feel the floor". Yesterday his leg hurt so badly he wouldn't walk. This is really scary! His only major physical complaint before this was joint pain. In the middle of all of this I sent my blood to IGeneX. It's positive.

 

He is now on amoxicillin, which has helped in the past, only now it is also making him feel much worse. We've added activated charcoal and upped his probiotics from 15 billion to 50. I'm going to start him on benadryl this week too. There is only one LLMD in my province (that I have heard of). Luckily he is only a few hours from me. But the wait is long, as he takes patients from all provinces, as well as other countries! I'm pretty much on my own for at least another 6-8 weeks until we get our appointment with the LLMD. I only have access to amox and supplements. Is there anything more I should do, or anything I should be doing differently while we wait? I just want him to feel better, or at least know he's getting better despite his suffering. I'm second-guessing everything and wondering if I should stop giving him amoxicillin and just let his body have a break? Thanks for any words of advice.

[Suzan]

Oh dear yes it sounds like lyme. You said that the positive igenex test was YOUR test? So you will be seeing the LLMD for both of you?

 

We do epsom salt baths and motrin in addition to the benadryl. I also have sarsparilla (simlax) not sure if I have those all spelled right. This is an herb that should help with herxing. Plenty of rest and don't over do it. and the weeks will go by before you know it. We had to wait far too long for our appt and it seemed awful but it did go by quicker than I expected.

 

HUGS!

 

Susan

[sf_mom]

Do not suspend antibiotics for your son. This is a herx response and it could last weeks. Off antibiotics he could relapse further within three weeks. You'll need to push through and get some of the die-off behind you. Focus on DETOX. There are a lot of herbs you can purchase from NutraMetrix to help treat Lyme but further herxing and symptoms would be anticipated. So, better to stick with Detox until you get some guidance and your confidence grows.

 

-Wendy