Starting over with a new LLMD

[pixiesmommy]

So too many red flags were popping up with our last dr, including today we realized that some of our paperwork was not even ours- he had handed us someone else's lab results!!!!

 

Anyway, off to see Dr P today (recommended by Dabel, and recommended to her by IowaDawn) and he was great. Very up-front, no b.s. kind of guy, not arrogant at all and not trying to sell us 542 kinds of supplements or charge a fortune for possible hokey urine tests to be sent to who knows where.

 

He did a quick neuro exam (touch your nose, etc.) and took a very thorough history (and listened! and typed in notes! and works on the Cunningham study with PANDAS/Lyme and knows what PANDAS IS!!!! YAY!!!) and then drew about 7 vials of blood or so to run 6 co-infections (which we had not tested for previously, or even had mentioned to us with the other dr.)

 

Prescribed 500mg/Ammox 3x/day and 250mg/Azith 1x/day (she's 58 lbs) and said lets just keep it simple and start there.

 

Only new advice I heard was NOT to give Florastor with the abx- he wants that 2 hours apart too. Base of 30 billion for probiotic intake (which we were doing, but just keeping that # in mind) and we'll go back in 4-6 weeks. We should have test results in 2 weeks for co-infections.

 

I feel good about this- this feels better than our last dr and having he abx makes me feel some relief.

 

HOPING!!!!!!

 

*edited for misspellings... because I'm OCD like that.

Edited February 9, 2011 by pixiesmommy

[lfran]

Great news! Good luck.

 

What part of the country is this new doctor in?

 

So too many red flags were popping up with our last dr, including today we realized that some of our paperwork was not even ours- he had handed us someone else's lab results!!!!

 

Anyway, off to see Dr P today (recommended by Dabel, and recommended to her by IowaDawn) and he was great. Very up-front, no b.s. kind of guy, not arrogant at all and not trying to sell us 542 kinds of supplements or charge a fortune for possible hokey urine tests to be send to who knows where.

 

He did a quick neuro exam (touch your nose, etc.) and took a very thorough history (and listened! and typed in notes! and works on the Cunningham study with PANDAS/Lyme and knows what PANDAS IS!!!! YAY!!!) and then drew about 7 vials of blood or so to run 6 co-infections (which we had not tested for previously, or even had mentioned to us with the other dr.)

 

Prescribed 500mg/Ammox 3x/day and 250mg/Azith 1x/day (she's 58 lbs) and said lets just keep it simple and start there.

 

Only new advise I heard was NOT to give Florastor with the abx- he wants that 2 hours apart too. Base of 30 billion for probiotic intake (which we were doing, but just keeping that # in mind) and we'll go back in 4-6 weeks. We should have test results in 2 weeks for co-infections.

 

I feel good about this- this feels better than our last dr and having he abx makes me feel some relief.

 

HOPING!!!!!!

[pixiesmommy]

Midwest- he practices in Illinois and Iowa

[dabel]

I am happy that you like him and hope that you all get the correct treatment so you can all heal and get on with life. Keep me posted on how things are going! I am praying for your families recovery!!

[Suzan]

Sounds great! Very similar protocol to what my 50 lb dd is on. I hope you see some nice improvements and not too much herxing. Keep us posted!

 

Susan

[philamom]

It sounds like you're in better hands now. It is also a similar protocol that my dd9 (60lbs) started on...1000 mg Amox & 250mg Zith daily. We then went on to add a cyst buster on the weekends, and are currently treating co-infections as well.

 

Good Luck!

[sf_mom]

This does sound like a better protocol!!!!!!!!!! I have great confidence in this Dr....... he will get your DD well. Remember with treatment it will be bumpy but there is true healing on the other side.

 

I asked our Dr. when we'll know our children are done with treatment. His response was OH YOU WILL KNOW and plus, I WILL KNOW. We are already trending much better than we ever did with PANDAS treatment and my confidence is growing that we will not suffer a lifetime of issues.

 

-Wendy

[Bill]

This does sound like a better protocol!!!!!!!!!! I have great confidence in this Dr....... he will get your DD well. Remember with treatment it will be bumpy but there is true healing on the other side.

 

I asked our Dr. when we'll know our children are done with treatment. His response was OH YOU WILL KNOW and plus, I WILL KNOW. We are already trending much better than we ever did with PANDAS treatment and my confidence is growing that we will not suffer a lifetime of issues.

 

-Wendy

 

 

Hey Wendy - remind me again how far you guys are into treatment? My son is also on the augmentin/zithro/weekend tindamx regimen now some 4 months into it and we are not seeing positive trending. I finally put my data points into Excel and there is negative trending since middle of December consistent with what we've observed. Well - one foot/ankle getting better and eyes look better so that is positive but OCD and behavior are worse, walking and handwriting are not improving. Of course OCD and behavior could be because we reduced his Prozac from 30mg to 20mg in the middle of December as well , but, that would also mean we are not seeing clear improvement either (except eyes/ankle). Too many variables!!!!!!!

 

bill

[sf_mom]

Bill,

 

We essentially broke antibiotic protocol shortly after our son's first IVIG in September 2009... He was always on higher dose of azithromycin because he was more responsive. In May of 2010 we started with combo'd antibiotics in a lyme like fashion. Then August 2010 we officially started treating Lyme under the guidance of an LLMD. So, its hard to say how much of the Lyme was treated in advance of official diagnoses but we are 18/19 months into overall treatment between PANDAS/Lyme.

 

He has had many symptom free days and he is over one year post his last hdIVIG. On Jan 2nd we had a change in antibiotic protocol... we added Cedax which crosses BB and kills all forms of spirochete. Apparently Azithromycin cross BB in small amounts and only kills spirochete in active form. Upon addition we had almost immediate resolution to mood liability but he also picked up frequent urination, talkative/manic moments with dilated pupils (associate with nerve damage in the brain), a cough, chapped lips and rash on his face. All symptoms were associated with herxheimer reaction and the cough is specific to bartonella per our LLMD. Over the last six week all symptoms have resolved except cough and periodic dilated pupils. He is really having some serious coughing jags as I type but to me that means he is getting ready to give it up.

 

Currently the cough, periodic dilated pupils, dyslexic errors are his only remaining symptoms. I believe it truly takes a good two years to cure a child with chronic Lyme Disease. Granted there are some the heal much faster..... but if I knew of a short cut I'd definitely be posting about it. Even with those three symptoms, I still believe we have another year of treatment.

 

In my experience with lyme/herxing is that the symptom you hoped would resolve never does, they often trade something old for something new, they revisit stuff that you thought was gone, the symptom that resolves is unexpected but it all fades over a loooooooooooonnnnnnng period of time.

 

I'd say your positive improvements means its working and you'll have to hang in there on the rest of the symptoms. Lowering the Prozac is huge and a step in the right direction.

 

Hope our story gives you some perspective and hope.

Edited February 10, 2011 by SF Mom

[Bill]

Bill,

 

We essentially broke antibiotic protocol shortly after our son's first IVIG in September 2009... He was always on higher dose of azithromycin because he was more responsive. In May of 2010 we started with combo'd antibiotics in a lyme like fashion. Then August 2010 we officially started treating Lyme under the guidance of an LLMD. So, its hard to say how much of the Lyme was treated in advance of official diagnoses but we are 18/19 months into overall treatment between PANDAS/Lyme.

 

He has had many symptom free days and he is over one year post his last hdIVIG. On Jan 2nd we had a change in antibiotic protocol... we added Cedax which crosses BB and kills all forms of spirochete. Apparently Azithromycin cross BB in small amounts and only kills spirochete in active form. Upon addition we had almost immediate resolution to mood liability but he also picked up frequent urination, talkative/manic moments with dilated pupils (associate with nerve damage in the brain), a cough, chapped lips and rash on his face. All symptoms were associated with herxheimer reaction and the cough is specific to bartonella per our LLMD. Over the last six week all symptoms have resolved except cough and periodic dilated pupils. He is really having some serious coughing jags as I type but to me that means he is getting ready to give it up.

 

Currently the cough, periodic dilated pupils, dyslexic errors are his only remaining symptoms. I believe it truly takes a good two years to cure a child with chronic Lyme Disease. Granted there are some the heal much faster..... but if I knew of a short cut I'd definitely be posting about it. Even with those three symptoms, I still believe we have another year of treatment.

 

In my experience with lyme/herxing is that the symptom you hoped would resolve never does, they often trade something old for something new, they revisit stuff that you thought was gone, the symptom that resolves is unexpected but it all fades over a loooooooooooonnnnnnng period of time.

 

I'd say your positive improvements means its working and you'll have to hang in there on the rest of the symptoms. Lowering the Prozac is huge and a step in the right direction.

 

Hope our story gives you some perspective and hope.

 

 

Yes and thank you. We have some time under our belt with PANDAS treatment as well but only the past four with high(er) doses of ABX. I keep seeing Cedax come up...something I should mention to my doctor I think. We see her this 1 March.

 

One question, regarding "talkative/manic moments with dilated pupils (associate with nerve damage in the brain." Were you referring to the dilated pupils only or the combination of dilated pupils with the talkative/manic moments associated with nerve damage in the brain? And I guess, what do you mean by damage? One of our son's earliest symptoms were the dilated pupils. Most #$((#$*!! doctors stated that the dilated pupils were the result of the medicines..."but doctor this started before the medicines"....blank stare. It was years before I realized that the dilation is the result of the inflammation in the brain. There was a 3 year period when we could not have told you the color of his eyes (pupils covered 80% of the width of the iris most of the time).

 

Just so others know - his pupils are still dilated more often than not but 80% is rare and some days his eyes look 100% normal! They are blue BTW.

[sf_mom]

I've mentioned the CeDax several times because you got to get infection in the brain if its there. I am not positive everyone would get similar positive response but you never know.

 

It is interesting to watch our LLMD's strategic protocol... Although he believes all three of our children are infected with the same thing (lyme/bartonella/babesia) he is treating them all with slightly different protocol. When he hits on one that works, he rotates towards that with my other children. He is definitely watching for treatment responsiveness. We start our younger daughter on Cedax in 10 days but he is combo'ing it with Alinia/Rifampin... my older son is on Alinia/Azithro/CeDax. He also doesn't hold the same protocol for very long without a rotation or increase in regimen.

 

It is only the dilated pupils that is related to nerve damage in the brain (unfortunately its also associated with pain). He did mention the nerve name, it was long, he said it quick... and I did not retain the information other than its related to a specific brain nerve. Good news is he said it should resolve with treatment and time.

[susie]

 

 

It is interesting to watch our LLMD's strategic protocol... Although he believes all three of our children are infected with the same thing (lyme/bartonella/babesia) he is treating them all with slightly different protocol. When he hits on one that works, he rotates towards that with my other children. He is definitely watching for treatment responsiveness. We start our younger daughter on Cedax in 10 days but he is combo'ing it with Alinia/Rifampin... my older son is on Alinia/Azithro/CeDax. He also doesn't hold the same protocol for very long without a rotation or increase in regimen.

 

 

I'm curious how often the protocol is changed. My daughter has been on Azithromycin for about 6 weeks now. She's also on Augmentin and has been for months for PANDAS. I've tried stopping the Augmentin a couple of times and had backward sliding both times. What seems to have really helped the most though is the tinidazole on the weekends. It's tough on her tummy, but it seems to be helping a lot. So, my question is, when should we be rotating antibiotics? We're getting ready to go see a new Lyme doctor next week. I really like our current doctor, buy I'm afraid he doesn't have enough experience (I've stumped him too many times with my questions). Thanks!