momaine Posted February 19, 2011 Report Posted February 19, 2011 I had wanted to wait until all my dd's labs were back but I'm tired of waiting and so I'll update again when those come in. Despite negative Igenex testing (but one positive and a couple IND on some lyme specific bands)Dr. J felt that their was significant evidence based on symptoms and exposure that my dd has lyme and bartonella. He ordered a host of tests to try to corroborate that and the results are not yet back. Before we began lyme treatement, my dd was back sliding after 4 HD IVIG. (she had HUGE improvement after the first one, more improvement after second one, and third and fourth, not so much) Every time we tried to take her off Augmentin, she would get worse in about two weeks time. Since beginning Lyme/co-infection treatment (added Minocyline and Tindamax to her Augmentin and Azith) she has begun improving again, fairly significantly. One week after beginning treatment, she broke out in a lyme rash that only lasted about ten minutes. Dr. J's office said it was from die off. We got photos of it and sent it to his office. Her symtpoms definitely wax and wane based on when she takes the Tindamax during the week. (two consecutive days per week) but the trend is very positive and I am so pleased. Dr. J felt that it was likely that the lyme came first and wreaked havoc on her immune system and the PADNAS came as a result of the lyme not being treated. The same year that dd symptoms began her pony became so lame that we eventually had him euthanized. (vet did not test for lyme despite my suggestion) and since then our other two horses and our dog have had lyme disease, so it is not a far stretch to think that we too are infected. Dd has had multiple negative Lyme Western blots but we did not test until she had had symptoms for several years. She is also one of those kids who does not make enough antibodies to fight off strep. Anyway, the plan at this point is to continue with lyme treatment and IVIG and see how it goes. Both of her dr's believe the treatments are complimentary. So glad I spent the money to see Dr. J. It was some of the best money I've ever spent. It feels so good to have someone on board who has seen it all. Love both of our docs! Really believe they are doing their best to get my dd back to 100%.
LNN Posted February 19, 2011 Report Posted February 19, 2011 Such good news! Seems like forever that we've "known" each other - first on the OCDP forum and now here - and it always feels like a family celebration when one of our kids has a breakthru. It's like a team relay and we all cheer when one of our own turns a corner and heads down the home stretch! Like you, we're thinking lyme/bartonella came first then strep tipped the bucket. But we also have incidents in toddlerhood (three days of eye blinking, episodic manic/rage behaviors) that make us think the immune system may have always struggled when an infection added more of a load than his body could handle. It just reached a point where everything crashed and it's been three years of aggressive/expensive treatments to rebuild. But gosh doesn't it feel good to see your kid happy again! Thanks for the update! (side note - there's an OCDP forum member who has always been skeptical of Pandas but out of desperation, her doctor has started an abx trial on her 13 yo who has struggled for years and been a non-responder to meds. After 5 days, they are seeing improvement! So there is always hope!)
momaine Posted February 19, 2011 Author Report Posted February 19, 2011 Thanks for sharing our joy LLM! I haven't been reading the OCDP list lately. I'm working again and life has just been so busy that I haven't fit it in. Plus, it's a frustrating forum to read since they don't want to hear about PANDAS. I may update them on our lyme status though. Maybe I'll just repost what I wrote here and tailor it to that site a bit. I'm working with a woman, whose dd has PANDAS/LYME symptoms and her pediatrician has told her Pandas is a myth. They finally agreed to test her for lyme after her insistance. She is a mom of 5 and is overwhelmed by her dd's symptoms and money issues but hopefully she'll find the help she needs. So frustrating!
momcap Posted February 19, 2011 Report Posted February 19, 2011 I'm so happy for you, that you are getting answers and getting to the bottom of things!
sf_mom Posted February 19, 2011 Report Posted February 19, 2011 CONGRATULATIONS! So glad you are seeing results.... There is hope. -Wendy
Fixit Posted February 19, 2011 Report Posted February 19, 2011 Thanks for posting your childs quick response to new treatment... So exciting... Love hearing it!!!
kimballot Posted February 19, 2011 Report Posted February 19, 2011 I have been following your posts for a while. I am so happy for you! I am sure that your determination and positive attitude have much to do with this! Keep us posted on your progress!
matis_mom Posted February 19, 2011 Report Posted February 19, 2011 I had wanted to wait until all my dd's labs were back but I'm tired of waiting and so I'll update again when those come in. Despite negative Igenex testing (but one positive and a couple IND on some lyme specific bands)Dr. J felt that their was significant evidence based on symptoms and exposure that my dd has lyme and bartonella. He ordered a host of tests to try to corroborate that and the results are not yet back. Before we began lyme treatement, my dd was back sliding after 4 HD IVIG. (she had HUGE improvement after the first one, more improvement after second one, and third and fourth, not so much) Every time we tried to take her off Augmentin, she would get worse in about two weeks time. Since beginning Lyme/co-infection treatment (added Minocyline and Tindamax to her Augmentin and Azith) she has begun improving again, fairly significantly. One week after beginning treatment, she broke out in a lyme rash that only lasted about ten minutes. Dr. J's office said it was from die off. We got photos of it and sent it to his office. Her symtpoms definitely wax and wane based on when she takes the Tindamax during the week. (two consecutive days per week) but the trend is very positive and I am so pleased. Dr. J felt that it was likely that the lyme came first and wreaked havoc on her immune system and the PADNAS came as a result of the lyme not being treated. The same year that dd symptoms began her pony became so lame that we eventually had him euthanized. (vet did not test for lyme despite my suggestion) and since then our other two horses and our dog have had lyme disease, so it is not a far stretch to think that we too are infected. Dd has had multiple negative Lyme Western blots but we did not test until she had had symptoms for several years. She is also one of those kids who does not make enough antibodies to fight off strep. Anyway, the plan at this point is to continue with lyme treatment and IVIG and see how it goes. Both of her dr's believe the treatments are complimentary. So glad I spent the money to see Dr. J. It was some of the best money I've ever spent. It feels so good to have someone on board who has seen it all. Love both of our docs! Really believe they are doing their best to get my dd back to 100%. Thanks for posting this info. We kind of put off any further, more aggressive PANDAS treatment until we deal with the Lyme. I was in the back of my mind hoping once Lyme and co-infections are gone, PANDAS will be gone too. So I am thankful for your post, to make me see that even Dr. J is saying both things can be treated concurrently. It open a little door back there... I am not sure I am expressing this correctly, but bottom line is, thanks for sharing I hope you continue to see improvement, and that every gain "sticks" for good!
Iowadawn Posted February 20, 2011 Report Posted February 20, 2011 Curious on the dosage/frequency of IVIG per Dr. J. We are doing abx, etc. + IVIG. Our doc trained some with Dr. J. Iowadawn
amyjoy Posted February 20, 2011 Report Posted February 20, 2011 Have you all seen the movie Under Our Skin, about lyme? It is insightful and gut-wrenching, and does a great job not only telling the lyme story but all the Dr. J heroism. There has been a high concurrance - co-infection rate of Lyme-related infections / PANDAS in the kids we see in our office (northern CA), probably as high as 80%. I'm happy to say that our doc also trained with Dr. J for years, and every summer still goes back for a week or two to work with him. That said, DS has not shown any positive lyme-related testing. I can't help but feel that his pre-disposing immune weakness was related to the celiac.
momaine Posted February 20, 2011 Author Report Posted February 20, 2011 Curious on the dosage/frequency of IVIG per Dr. J. We are doing abx, etc. + IVIG. Our doc trained some with Dr. J. Iowadawn Dr. J didn't specify ivig dosage but he knew my dd is a patient of Dr. B and said if Dr. B felt it was a good idea, to keep doing it. I'm assuming he knows the dosage that Dr. B typically uses.
momaine Posted February 20, 2011 Author Report Posted February 20, 2011 I have seen Under Our Skin. It is a must see if you suspect Lyme.
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