another newcomer

[aidansmom]

I have been on the PANDAS board (reading more than posting). We just went to see Dr. B. to consult with him about PANDAS this past Monday. Despite my efforts I was not able to get IGeneX results to Dr. B. or myself before our appointment. Our other lab results showed that my son was immune deficient (slightly low total IGG and 10 of 14 Streptococcus pneumoniae Antibodies serotypes were low) and he had high ASO and antidnase titers. Dr. B. thought Aidan had strep that he was having trouble getting rid of and he had sent us home prescribing Augmentin and steroids to clear the infection. Wouldn't you know it but the IGeneX result were in my mailbox when I arrived home in Ohio on Monday night.

 

Our results:

 

IGeneX IGM results negative

23-25 IND

39 IND

41+

 

IGeneX IGG results Positive

CDC results negative

30 +

41++

58+

83-93+

 

Any comments on these results?

Of course I have faxed these results to Dr. B yesterday and I am trying to find out what he recommends as far as treatment (is the treatment he proposed still valid?) and I hadn't heard from him yet. I will call his office again as soon as I post. Just wondered if you experienced Mom's have recommendations.

Thanks!

Elizabeth

[MichaelTampa]

The word on steroids is you don't want to do that if you might have lyme, so, at a minimum, you would do well to hold off on that until the doctor reviews the results.

[Suzan]

I agree, hold off on the steroids. My dd9 reacted to augmentin but I think it was a herx (in hindsight). Do you plan on looking for an LLMD in your area? I am very glad you tested! Looks like you are dealing with lyme.

 

Susan

[sf_mom]

I agree too... hold off on steroids. It definitely appears you are dealing with Lyme and a good LLMD will help sort out potential co-infections for your son. I am sorry for the results but wanted to add there is hope for recovery in your son's future.

 

Our LLMD treats with multiple antibiotics and the average rate of recovery for child with chronic Lyme is two years.

 

I don't know of any LLMDs in your area but if your are willing to travel.... I am sure plenty of us have suggestions.

 

-Wendy

Edited December 15, 2010 by SF Mom

[aidansmom]

I agree too... hold off on steroids. It definitely appears you are dealing with Lyme and a good LLMD will help sort out potential co-infections for your son. I am sorry for the results but wanted to add there is hope for recovery in your son's future.

 

Our LLMD treats with multiple antibiotics and the average rate of recovery for child with chronic Lyme is two years.

 

I don't know of any LLMDs in your area but if your are willing to travel.... I am sure plenty of us have suggestions.

 

-Wendy

Any suggestions for a Lyme doctor would be welcome - from SF Mom or anyone else. I am in the Akron/Cleveland area, so a doctor in the midwest, lower New England or mid-atlantic areas might be a day's drive away. (It took us 7 hours to drive to Dr. B's office in Conn.) If we find a doctor who is the right fit for us and our son we will find a way to get him there.

[kmom]

We see Dr. B too altho we're working on the Lyme at the moment b/c our LLMD believes the steroids they were on (within a month were on a burst, then taper and then again for pre/post IVIg treatment) aggravated the Lyme a lot. So if IVIg is believed as a treatment step down the road, I'll have to weigh the whole steroid thing. I just needed them to find some mental and physical peace b/c they were cycling every month where they'd backslide for a week or two. It was awful, exhausting and just so unfair. But better now that we've added rx's! They are nowhere near healed but managing and we're very hopeful now. We are located in near Philly but see an LLMD near Annapolis, MD. He's very good at responding to phone calls on days he's in the office. Hasn't been the case w/ some PANDAS docs we've seen. It's quite frustrating when you are desperate and paying a lot to have them treat your kids. Good luck and PM me if u want the LLMD contact's info.