KaraM

Epsom salt baths are helfput. Our LLMD said to add 2 cups of Epsom Salt and 2 cups of baking soda. Soak for at least 20 minutes. Longer if possible. From what I understand, Epsom salt baths are also supposed to help with constipation (not positive thought). We also use charcoal capsules. 4 or 5 added to some dark juice (or oreos broken up in milk). If you can get past the black color it turns the beverage into, the taste isn't an issue. Texture is a little grainy.

I am cracking up!!!! This is awesome. My dd9 will call me in to show mewhen it's extra big...I just say, "Oh, good honey! That means you got rid of lots of yucky junk in your body and you're going to have a good day."

Thanks everyone. This is good to know. I don't mind the pics of kid - I think that will be comforting. I'll ask the office staff to remove the pamphlets. My husband and son will also be there (my son has an appointment, too), so she will be able to wait in the waiting room while I speak with Dr. J. Both my son and daughter are pretty observant, so if I can have references to ticks and Lyme removed for the time being, then that will ease MY fears.

We will be seeing Dr. J. next month. I have not let my children dd9 know that she has Bartonella and may have Lyme. She has OCD and one of her fears is being bitten by a tick (ironically enough). Anyway, I was wondering whether his office makes it clear/obvious that he is treating Lyme (for example, are there pamphlets and posters all over the place)? If yes, I'm going to need to do some serious distraction or make some arrangement with the staff, or somehow prepare my dd. Thanks, Kara

Thank goodness...I pray for continued and quick recovery.

Wow. This is interesting....would that impact IVIG treatments, too. All those PANDAS kids getting IVIG, then finding Lyme???

Thanks to the person that posted the link in response to the question about rash having only one ring. That link led me to this one. There's some good info on this site...I'm just getting started. But when I read this quote I had to post it...Wilma - you say your child never sleeps...maybe treating the Lyme will help. The doctor that authored the article is a pediatric neurologist in Neptune. NJ...aren't you in or near NJ? http://sites.google.com/site/marylandlyme/children/neurological-manifestations "Children present with central or peripheral nervous system manifestations frequently. The central nervous system manifestations include an encephalopathy. These children have difficulty with memory, concentration and learning new material in school. They have an excessive amount of fatigue and have a wake-sleep disturbance, either becoming hypersomniac or insomniac." Kara

I would be really interested in seeing this if it is easy for you to track down. Thanks, Kara

You can also either rent or buy it from ITunes. I think the rental is $4.99. And, if I remember correctly, the 'Home use" version to buy is about $28.

We were never prescribe biacin for the PANDAS and the Bactrim was added once we found out about the Bartonella, so I can't say for sure. I think the antibioitc used for strep may depend on where the strep infection is. If I recall correctly, the doc put my nonPANDAS son on Biacin for a sinus infection, saying the Zithromax wouldn't get it there....

Yes, Dr. Bouboulis is whom I'm referring to. We see him as well and I would recommend him. If you want, we can chat more off line. He is the one who ordered the Lyme and co-infection tests for us. However, when the positive Bartonella came back, he chenged her medication to Zithromax and Bactrim and recommended we see an LLMD (Dr. Jones was his recommendation). We will continue to see Dr. B. as well, at least for now. What type of Lyme test did you do? Did you go through Igenex? Did you do a Western Blot?

We saw an LLMD after our PANDAS dd9 was diagnosed with Bartonella. We were still waiting on the WEstern Blot Lyme results at the time of the appointment. For Bartonella, she was on two - Zithro and Bactrim. The LLMD said that was appropriate treatment for both Bartonella and Lyme - so even if the WB came back positive, she wouldn't change the treatment at that point. We see her again Thursday...we'll se if she switches anything up then...

Our dd's titers were first tested March 2010 after she had a round of abx. They were slightly elevated. Over the course of the next several months they went down until they were finally in the normal range by the beginning of September. Her OCD improved as well so everything seemed to make sense. However, during the fall she declined and this winter was almost as bad as last year (even though she was still on abx). Her titers remained low though. We thought it might be due to exposure and that may very well have contributed. Before going the IVIG round, Dr. B tested her for a bunch of other infections. She tested positive for Bartonella. The jury is still out on Lyme.... My point is, maybe something other than strep is at play...

Ooops! Sorry, I meant to include it....Silly me. Thanks, Meg's Mom for adding it...

The show was already aired (I think on Wednesday), but you can listen to it on their website any time.

The segment is about about 15 minutes long. Dr. Jenike is being interviewed. He mentions PANDAS...Lyme about 10 - 12 minutes in. Here is the link: http://hereandnow.wbur.org/2011/05/25/obsessive-compulsive-disorder

The segment is about about 15 minutes long. Dr. Jenike is being interviewed. He mentions PANDAS...Lyme about 10 - 12 minutes in.

Hi Wilma, I'm assuming that Dr. B ordered the tests for you. Did he add any more antibiotis after getting the results? Did he say to stop the steroid? My dd9 was diagnosed with PANDAS - 189 Cam K, negative throat culture put positive blood test for strep in spring 2010. She did really well when she was put on Zithromax and by the summer was almost 100%. But she declined over the fall until she was almost as bad as last year during the winter months. Dr. B had her tested for Lyme and co-infections. She came back positive for Bartonella as well (but not Lyme). Dr. B. put her on Bactrim in addition to the Zithromax. She has been improving since then - slow and bumpy, but definitely in the right direction. Hopefully this diagnosis will help you get your daughter what she needs. Best wishes, Kara

Exicting....Relieving....Promising....so many words, but none of them seem to truly capture what I'm thinking... As another poster said, it won't all be good from here on out...but hopefully the downs won't be AS deep and the good times will come quicker, be better and stay longer....

Aboslutely. It is public info. I read through it and was encouraged that the state is taking notice, but disappointed with the lack of discussion about neuro-psych symptoms, especially in children... Trying to get my dh to read the article LLM posted by the CT doc and Cure Unknown. He will eventually, I'm sure. He's on board, just time constrained (as everyone is...).

That's just great! Do you know if she noticed the difference as well? Could she articulate that she felt better or different?

My dd9 is 62 lbs and is on 200 mg Zithro once a day and 1 tsp (not sure the mg) of Bactrim twice a day. Our LLMD said if she wasn't responding we coud up the Zithro to 400 mg Zithro a day. My dd11 is is 95 lbs and is on 300 mg Zithro once a day and 1 1/2 tsp of Batrim twice a day. Your Zithro is a little higher than ours for a child a little smaller. When we were just on Zithro for PANDAS, my dd wanted to try a pill. The dosage was 50 mg more than her liquid dose...Dr. B said that wasn't a big deal...

We started Bartonella treatment for our dd9 at the end of March. She gets 1 tsp Zithromax/day and 1 tsp Bactrim 2x/day. She has definitely improved since then. We didn't have any overnight dramatic changes and we did have three or four episodes that I will call herxes. At the begining of the treatment it was like 1 step forward, 3/4 step back. After a month or so the huge steps back seem to have stopped. The progress still seems to be there, but very slow going. The LLMD said that she would normally treat for at least two months after symptoms disappeared, but with our dd's history of doing well in the summer then crashing in the winter, she would want to keep her on treatment through the winter. At the time of our LLMD appointment, we did not have WB Lyme results back. We see the LLMD again in June, so I don't know whether she will continue with this medicatin/dosage or switch something up. Kara

My husband handed this to me last night (he's a state rep). I haven't read it yet. It's about 36 pages. But is includes, among other things, recommendations to establish a commision of experts to propose solutions for the state, to mandate insurance coverage for long term treatment, to fund educational outreach. http://www.telegram..../WT17491430.PDF Hope this goes somewhere...

Sorry - meant to post that on that Lyme Board....