philamom

Really nice to see them taking action. I didn't think I'd ever see the day.

Hi Teri. Are you still seeing llmd (we use the same one)? He would speak with your ped and advise.

agree- sickening!

I think she was eventually released. Hope so.

I've been following this story from the beginning, and shed a tear every time. First Elizabeth Wray, now Justine - pretty sure there were others. It's sickening.

If lyme is negative or IND, please don't assume that the coinfections (mycoplasma, bartonella, babesia, ehrlichia, RMSF) are not involved. Agree. Testing stinks. Lyme - positive through Igenex, positive through Advanced Lab Culture (received a photo of spirochetes in dd's blood sample), negative through Quest Bartonella- negative through Igenex, positive through Quest Nicholas Lab (not regular Quest lab) RMSF- positive through Quest

We were one of his first high HD IVIG patients for PANDAS. A few before us, most not on the forum. My dd's first HD IVIG with him was in March 2010. Our first doctor appt. with him was in Sept 2009, but then my dd became so sick we couldn't get her out of the house to travel for IVIG. She had an HD IVIG prior, in June 2009 with Dr. K in Chicago. Dr. B chose this crazy journey because he really cares for our children - like most PANDAS doctors we've seen. In the beginning he used to spend 1-2 hours per visit talking with us for no extra charge. At one time he even shed a tear with us (hate posting personal stuff). Now of course, he has a hard time keeping up with the increase in patients - but still glad he hasn't given up.

If your insurance covers Dr. B, I would call everyday to check for cancellations- esp. given this weather. Hang in there. btw- I will pm you the name of the GI doctor to keep in your back pocket. He takes insurance, and sounds like he's open-minded, esp. to infections.

Sorry, didn't realize. It stinks that this all has to be that difficult. My plan allows for not having a primary. We use a mainstream ped for simple stuff (like there is any) and a DO who assists with our specialists when needed. Good luck.

If my dd didn't have positive results through other testing, had symptoms, and had been off abx for few weeks, I would probably order it. There was a guy who posted not too long ago about the test (red?). You may want to search to see if he did the single or triple draw.

Also, have the name of a ped GI doctor near Stamford. No personal experience, but was recommended to us when my dd was having some major GI issues. PM me if interested.

There's also Dr. M and Dr. O in CT. Both are fantastic, integrative, and can address PANDAS, PANS, chronic infections.

What about Dr. B in Stamford. We travel from the Philly area to see Dr. B and Dr. J (llmd) in New Haven.

Unfortunately, I could not go. Sending prayers - she's in my thoughts! It's disheartening to say the least.

Agree with beesknees. Only drawback is price, triple draw, and I'm pretty sure you need to be off antibiotics. I believe Tpotter received a positive result through a tissue sample.

Wish I could attend. I will be there in prayer!

Don't have time to post much today, but I will try and email you during the week. I recommend searching out a local lyme group and familiarizing yourself with lyme and co-infections. It will seem overwhelming at first. Lyme (and co's) are so complicated and unfortunately testing stinks! Lyme goes into different forms and usually needs more than one antibiotic to treat it (unless its a new tick bite). Negative co-infection results don't always mean its not there. We are negative for bartonella through Igenex, positive through another lab. Does the breathing issue seem like air hunger symptoms? Air hunger is a symptom of Babesia, which requires a medicine besides antibiotics. Anyway, I'll reach out to you soon. btw- her getting worse could be herxing - very common in starting new antibiotic.

Also questioning the 21 days? Does the doctor feel this was a recent bite? Did you see an embedded tick on her? Unfortunately, if a tick bite is not treated right away, more than one antibiotic is needed, and usually for longer duration.

Hi. I cant really give you advice on the herbs and supplements (hopefully someone else will chime in), but was wondering if she was checked for tick-borne co infections. The breathing problems could be related to Babesia, which would need a different treatment protocol then lyme.

My dd also had issues in this area - a few times, during different flairs. Not as severe as some here, but her pediatrician pulled her from school in 2nd grade because of her rapid weight loss - to focus on her health. She is 12 now. Mainly for us it was the fear of choking each time (not just fear, but clearly difficulty being able to swallow). During one flair she would constantly spit because of a hard time with the normal phlegm in her mouth. She never spit prior to the flair. There was one flair where it escalated to extreme ocd of calories. She was checking labels - for calories and expiration dates - on everything. The issues resolved with antibiotics and IVIG. Some of it though did move to a fear of vomiting, which became very problematic for us. But she also had nausea, gerd, GI issues, when not properly treated, or treated at all.

Hi Cobbie. Tough break- I gotta think Clindamycin will do the trick. Just don't forget the probiotics to protect against c-diff. I'm sure your aware that impetigo is a form of strep. When my daughter had this when she was little, the doctor never made me aware of it, even though a month later I was discussing PANDAS with him. I learned about the connection years later on this forum.

So happy for you powpow. Praying there are no setbacks this spring!

nyfirefly- you may want to look into Bartonella. You probably already know this, given the lyme dx, but Bartonella is very elusive and very difficult to yield a positive test. My dd's bart tests have repeatedly come back negative through Igenex, but have come back positive a few times thru Quest. Important- If you run it through Quest, be certain to have the doctor order it to be performed at their Nicholas Lab in California. It is covered by our insurance. Symptoms from the bartonella infection included anxiety, ocd, GI issues in my daughter. Good luck with your appointment!

Thanks for sharing. Hope its still working for you.

We have been using it for years.