Another Lyme post

[momofgirls]

Hi everyone, I haven't posted in a while but felt I should jump on and share our experience. My dd7 diagnosed with pandas seemed fit the strep/sudden onset description perfectly. We did antibiotics and several ivig's with some success. Actually I was putting her at about 90 percent post her ivig in feb but her improvement plateaued and it seemed she could move closer to 100 %. So we ran the igenex lyme test and she was positive for lyme. Previous tests through quest were all negative. We started lyme treatment shortly after and almost immediately we saw an increase in symptoms. I was shocked because I too was in lyme denial and she never had physical symptoms typically associated with lyme. The first two months were bumpy much like what dr k says to expect with ivig. He refers to it as flipping the pages. Now, two months into the lyme treatment she is making progress. Some days a little better than before starting the additional antibiotic. We were told by Dr Jones it could take 9 months or more to get it all. I want to add that it is shocking to me that after months of antibiotics and several ivig's that she could herx with the addition of bactrim. I think these lyme guys know what they are talking about. Sometimes it is the combination of antibiotics that make the difference as it certainly has for our daughter. PLEASE look into the lyme testing with an ILADS doctor and don't trust just anyone with the treatment. Our pandas doc seem to think the 250mg azyth should treat the lyme just fine but that is certainly not the case. No steroids if you have not properly ruled out lyme! Best to all.

[matis_mom]

Wow, thanks for posting, that sounds lot like my son too. We have not moved forward with IVIG or plasmapheresis yet. I definitely need to do the IGENEX test! Now if I could just convince my husband...

[lyme_mom]

Hi everyone, I haven't posted in a while but felt I should jump on and share our experience. My dd7 diagnosed with pandas seemed fit the strep/sudden onset description perfectly. We did antibiotics and several ivig's with some success. Actually I was putting her at about 90 percent post her ivig in feb but her improvement plateaued and it seemed she could move closer to 100 %. So we ran the igenex lyme test and she was positive for lyme. Previous tests through quest were all negative. We started lyme treatment shortly after and almost immediately we saw an increase in symptoms. I was shocked because I too was in lyme denial and she never had physical symptoms typically associated with lyme. The first two months were bumpy much like what dr k says to expect with ivig. He refers to it as flipping the pages. Now, two months into the lyme treatment she is making progress. Some days a little better than before starting the additional antibiotic. We were told by Dr Jones it could take 9 months or more to get it all. I want to add that it is shocking to me that after months of antibiotics and several ivig's that she could herx with the addition of bactrim. I think these lyme guys know what they are talking about. Sometimes it is the combination of antibiotics that make the difference as it certainly has for our daughter. PLEASE look into the lyme testing with an ILADS doctor and don't trust just anyone with the treatment. Our pandas doc seem to think the 250mg azyth should treat the lyme just fine but that is certainly not the case. No steroids if you have not properly ruled out lyme! Best to all.

Great advice. Those of us who keep posting about Lyme really believe Lyme Is likely a factor in a large percentage of PANDAS cases. Unfortunately the "pandas" doctors are not experts on tick borne disease and miss a lot of Lyme like most doctors who are not ilads-trained. They also cannot possibly know all the ins and outs of treating lyme and other infections simultaneously so don't count on anyone but an ilads trained doctor to diagnose and treat Lyme. A lyme or bartonella diagnosis could be the missing link in so many of these cases where the kids continue to be sick. We are in the middle of an epidemic of Lyme Disease and I shudder to think how many more kids have to get this before the medical community, specifically the infectious disease society of America, wakes up and starts dealing with it properly instead of attacking courageous doctors who treat Lyme. Dr jones is a one of those wonderful doctors!

[philamom]

Hi everyone, I haven't posted in a while but felt I should jump on and share our experience. My dd7 diagnosed with pandas seemed fit the strep/sudden onset description perfectly. We did antibiotics and several ivig's with some success. Actually I was putting her at about 90 percent post her ivig in feb but her improvement plateaued and it seemed she could move closer to 100 %. So we ran the igenex lyme test and she was positive for lyme. Previous tests through quest were all negative. We started lyme treatment shortly after and almost immediately we saw an increase in symptoms. I was shocked because I too was in lyme denial and she never had physical symptoms typically associated with lyme. The first two months were bumpy much like what dr k says to expect with ivig. He refers to it as flipping the pages. Now, two months into the lyme treatment she is making progress. Some days a little better than before starting the additional antibiotic. We were told by Dr Jones it could take 9 months or more to get it all. I want to add that it is shocking to me that after months of antibiotics and several ivig's that she could herx with the addition of bactrim. I think these lyme guys know what they are talking about. Sometimes it is the combination of antibiotics that make the difference as it certainly has for our daughter. PLEASE look into the lyme testing with an ILADS doctor and don't trust just anyone with the treatment. Our pandas doc seem to think the 250mg azyth should treat the lyme just fine but that is certainly not the case. No steroids if you have not properly ruled out lyme! Best to all.

 

Thanks for the update!! Good Luck with the new protocol!

[sf_mom]

Thanks for posting and hopefully others will as well!!!!!!!!

[PANDASmcnuggetsw/fry/coke]

"No steroids if you have not properly ruled out lyme! Best to all."

 

 

Momofgirls,

 

Do you know what happens if one does the steriod and unknowingly has lyme? We are just about to do the Igenex (got a negative IFA lymes test so far), but my daughter was absolutley gray in her face with dark circles ONLY WHEN she was on the sterood for those 5 days. It was weird.

 

Thanks,

PANDAS McNugetts w/fry/coke

[mom2gsd]

I'm so glad to see more posts concerning Lyme. After my DS14 was dx with Lyme in May, I have not been on the list often. We did 16 months of monthly IVIG for PANDAS, with only some improvements, began looking for other infections...found Lyme. Just tested positive for Strep (again) following another exacerbation this past month.

I would suggest to test for Lyme, if your child is not making improvements or continues to slide downward.

[KeithandElizabeth]

momofgirls:

 

Thank you so much for sharing your story!!! I do think that so many of these PANDAS children who are not reaching 100% may have a coinfection and this does give so many kids who did not do well with IVIG hope that there are still treatment options!!

[KeithandElizabeth]

bewell:

 

Were your 16 months of IVIG at a low or high dose?

 

I do think that the right antibiotic combinations will help your son, although the healing process can take some time.

 

Thank you for sharing your story!

 

 

Elizabeth

Edited August 4, 2010 by KeithandElizabeth

[PacificMama]

I just want to say that I am so glad to see posts from people who have gone ahead and tested for lyme. For those of you that have confirmed diagnosis, I'm certainly sorry to hear that your child is dealing with lyme. But at the same time, I hope there is some relief in knowing what is at the root of the problem. I wish you all the best.

Mary

[sf_mom]

Thanks Bewell for posting!!!!!

 

I just wanted to add that my friend's son is FINALLY doing well after three hdIVIGs and discovering co-infections..... changing to the correct antibiotics made all the difference in the world. I hope you are experiencing similar. I suspect you have suspended IVIGs until the Lyme is addressed, correct?

[Vinny123]

@momofgirls:

 

The classic sign of early local infection with Lyme disease is a circular, outwardly expanding rash called erythema chronicum migrans (also erythema migrans or EM), which occurs at the site of the tick bite three to thirty days after the tick bite.Acute neurological problems, which appear in 15% of untreated patients, encompass a spectrum of disorders.Lyme disease is caused by Gram-negative spirochetal bacteria from the genus Borrelia. At least 11 Borrelia species have been discovered, of which are known to be Lyme-related

[PacificMama]

WRONG info here on the bullseye rash! This type of rash is seen in maybe as few as 30% of patients -- which leads to lyme being dismissed in way too many cases. There can be NO Rash ever, or a rash of a very different sort than a bullseye.

Also, there are many, many more than 11 species of borrelia -- which again leads to testing problems.

 

@momofgirls:The classic sign of early local infection with Lyme disease is a circular, outwardly expanding rash called erythema chronicum migrans (also erythema migrans or EM), which occurs at the site of the tick bite three to thirty days after the tick bite.Acute neurological problems, which appear in 15% of untreated patients, encompass a spectrum of disorders.Lyme disease is caused by Gram-negative spirochetal bacteria from the genus Borrelia. At least 11 Borrelia species have been discovered, of which are known to be Lyme-related

[mom2gsd]

bewell:

 

Were your 16 months of IVIG at a low or high dose?

 

I do think that the right antibiotic combinations will help your son, although the healing process can take some time.

 

Thank you for sharing your story!

 

 

Elizabeth

 

Hi Elizabeth,

We started out on high dose at 1.5, but after a growth spurt they became LD, we upped the anty to 2g/kg (over 2 days) for the second half. We began treating Lyme for the last 5 weeks, but he has had another strep infection, a bad Doxy burn and just this past week, had a horrible stomach virus, too sick for any meds. We are on hold at present on IVIG, and even then, he was positive for strep just following his last one. He is a neuro mess...his neurotransmitter test we just had done was "all elevations"....off the charts. I have to hope we will soon see him begin the healing process. Lyme makes everything more complicated and so much worse.

[7upMom]

No steroids if you have not properly ruled out lyme!

 

 

Srry, don't mean to sound like a doorknob if its already been posted , but why is this??