overwhelmed, my child just diagnosed lyme positive

My 9 year old son was found to be lyme positive on 4/11. The week before he started complaining of on and off aches in his left knee.

Saturday 4/9 he was at a friends party jumping on a trampoline and we noticed after his knee was very swelled up. Took him to urgent care , they tested and x rayed , sent us home after finding nothing. Just take ibuprofen.

Next evening ,still swollen ,running temp. 101.5 so back we went.
with the temp. They sent us to our main hospital Albany Med . They did fluid withdrawls, bloodwork. Covered everything. Infectious Disease Pediatric did a c6 next day it came back positive.

Head of Ped Infec Dis. is working with us now. As,soon as she walked into his room and looked at his knee she said "yup ,that's a lyme knee, I see them all the time"

She started him on doxycycline with probiotics also a few hours after taking doxy each day. Told us she was,waiting on western blot but expected it to be many igGs
WB did come back 10 bands igG pos. She,has him going on a second month of Doxy

He is,walking now on it, but what's frustrating is the swelling. It has come down from what It was a month ago , but still spongy. We measure it daily. Still middle knee and just above top of it is a centimeter more than other knee.

Is this normal for lyme knees? I don't see any other symptoms now ,just this. The first week on doxy he got nightly temps 102-102.6 for a couple hours then they would break. Knee hurt thrn also. Now he gets a few twinges. I just want the swelling to go away. :-(

I found a,LLMD in the Albany area so we have an appt. May 24 to see what else to do.

I am giving him Epson salt baths every other day, May bump that to every day. He takes,vit C and D and drinks,lemon water, and green tea with ginger.

Has anyone had 10 igGs positive? The igG thing is confusing .there's so many different takes on it on the internet.

We never saw a tick or rash. He says he's never felt pain in his joints befire, never really been sick with anything. Just a very active ,athletic child.

I am trying to keep it together, but it is all overwhelming

I am trying to find as much info on children with lyme and lyme arthritis as i can.
Stage 3 and Chronic confuse me ,

Are ALL stage 3 people chronic for life?
If this is the first flare up and it comes out as arthritis is it automatically CHRONIC?

Does the amount of pos. igGs make a difference? All I see is "you have lyme if its,5 or more igGs . Are less igGs better? The same or are more better or worse??

My brain is swimming with questions. Just trying to get things in order as I process ever thing we have had suddenly thrown at us in months time.

ko7 gave you some awesome information.

I also believe that more bands does not mean more infection. It is just a test that he is producing antibodies and that is a great thing! Producing antibodies is saying his immune system is working well and trying to fight.

I also concur about the need for more meds. A LLMD needs to be consulted.

As for the swelling, I have horrible knees and have been to an orthopedist for many years and ICE is your best med for inflammation of the knee. Also anti-inflammatory meds. Aspiration is the last alternative but I only have that done when I can't get the inflammation down with meds and ice. It is not good to have a foreign thing go into your knee to take out fluid and I avoid it at all costs.

This has to be so hard for a 9 year old.

You are doing a lot of the right things and the LLMD appointment will be here soon and that is great.

Here is a great site to learn about detoxing

www.tiredoflyme.com/detox-methods.html

It is so very hard to watch your child hurting......

Hi,
You've come to a great place to learn how to deal with a difficult situation! You will get lots of useful information from the folks here.

I was in a similar place as you in Nov 2015. Our 14yo DS had Lyme well over a year - his knee swelled twice before we finally convinced peds he had some kind of infection or something. I spent hours researching and never found one site that answered all the questions of parents new to Lyme so I started one you may wish to visit: www.ParentsofLymeKids.com. It has lots of links to great info by others that will help you nagivate this road. Read the our story section to see what our path was.

Everyone's infection is different in terms of symptoms but I will say if your DS has had it awhile, co-infections symptoms may come out as you continue on the initial treatment of doxy. For our DS, it was mainly drenching night sweats, 24/7 low grade fever - still occurring during treatment and breathing issues.

I highly recommend starting a spreadsheet of symptoms, noting each daily because they will vary and new ones may crop up, a numbering system for what kind of day he's had (like 5 = has to stay home from school down to 1-seems like he was never sick) (eg I measured temp 3 x a day that month and a month or two after), and getting a LLMD because you need to rule out co-infections which most infectious disease drs won't necessarily do.

Re: knee - it can take weeks/months for the swelling to go down or at least it did with DS. We were told it is okay to do ibuprofen (Motrin) round the clock to see if that helped get some of the fluid off. DS had no damage to the knee which is common despite how awful and painful it can be. We also use ice, blue Emu cream, castor oil with heating pad, epsom salt bath (although now he will only do footbaths). He continued with as much or as little sports as he could handle. Medium strength and heavy duty knee braces helped ($15-25 each at Walmart or drugstores or Amazon).

Not to alarm you but definitely mention the strep to the LLMD and look into Pandas - many kids have both as you may already know. Other parents here are sure to weigh in because I believe there are several who have dealt with both.

Best wishes! Let us know how he's doing and how his appointments go.