More lab results in from Dr. J

[kmom]

My two PANDAS/Lyme/Bartonella kiddos who see Dr. B in MD, finally got into see Dr. J a month ago for our 2nd opinion--we love Dr. B in MD but couldn't pass up an appt w/ a legend after such a horrific year. We want all the answers we can get--the good, the bad and the ugly. Dr. J had done more testing at the appt. Just hoping some of you can fill me on the Narcolepsy part of testing. I had gotten a list of important blood tests Dr. J likes to run. I remember seeing the HLA for Narcolepsy test and don't remember or never knew how that relates to Lyme. Then it slipped my mind at appt as to whether he'd do that test and why. Both DD and DS "have the HLA haplotype associated w/ Narcolepsy (HLA-DR15, DQA1*0102, DQB1*0602)". So with these 3 things positive, I am curious to know what it means, how it relates to Lyme, if it does at all and/or what the significance is of testing for it. I thought I heard he tests some things other doctors don't b/c he sees certain trends w/ children w/ LD...for example--something about cholesterol ratios too. So if you have any info, I'd love to hear it.

 

Interestingly enough my DD's band 31 converted from neg. to IND. Dr. J, suspected both kids could convert to a positive on bands 31 and 34 since they can cause/indicate autoimmune disease, hence where PANDAS could be playing a role??? Maybe next time, it will be positive??? Has this happened to anyone?

 

On a good note their Vit. D went from low 20s to around 70 within 3 months of Vit. D3 supplements. Overall they are doing so much better since attacking Lyme and Bartonella! My DD's teacher is amazed at the changes. I explained how when she met her in Sept. we only knew to report/explain PANDAS and that we never knew how truly sick she was. We did explain the kids' LD dx to the school when it came about but still, people don't really get it unless they live it. But either way, the teacher is thrilled to be see this new child emerge. To us it's the same child we always knew and just happened to lose in this nasty abyss called LD and PANDAS in '09. Thanks God for this forum full of determined/smart/caring parents. Without them, I don't know where I'd get such great advice and doctor recommendations. Thanks from the bottom of my heart!

[sf_mom]

I'll be interested to know what you find out about the Narcolepsy results.

 

My children are also expected to convert 'eventually' with antibody testing for Lyme. I will update if and when it ever happens. We are retesting younger DD for Babesia to see if she has converted and still awaiting those results.

 

Sounds like your kids are doing well!

[laure]

Hey Kmom and SF Mom,

We are also scheduled to see Dr. Jones in May, but in the meantime dd10 is being treated by Dr. B in CT for PANDAS and also an ILADS doc in Albany. Just curious what your kids are on, so we can get a head start before May... at 92 pounds she is on 2 days of tindamax on weekends (500 mg. a day) from the lyme doc for suspected bartonella, and 875 bid Augmentin, 250 bid Zithromax. Also supplement with a really good multi (D3, all the B's, CoQ10, alpha lipoic acid), Omega 3, and Magnesium, lots of probiotics, and clay when we can fit it in. Whew! MichaelTampa thinks the tindamax may be too low for a 92 pounder. My LLMD would give more if I asked...what are other kids of similar size on? We are close to 80%, sometimes it seems better, but that is because we know all of the dos and don'ts, if you know what I mean. (Don't rush her, don't pressure her, don't buy anything from "fat people", do open public rest room doors for her, do wash hands when she tells us to, etc.) Sounds so crazy when you write it out like this!!! We are dealing with OCD only.

Thanks for your feedback, learning a lot here!

Laura

[lismom]

Hey Kmom and SF Mom,

We are also scheduled to see Dr. Jones in May, but in the meantime dd10 is being treated by Dr. B in CT for PANDAS and also an ILADS doc in Albany. Just curious what your kids are on, so we can get a head start before May... at 92 pounds she is on 2 days of tindamax on weekends (500 mg. a day) from the lyme doc for suspected bartonella, and 875 bid Augmentin, 250 bid Zithromax. Also supplement with a really good multi (D3, all the B's, CoQ10, alpha lipoic acid), Omega 3, and Magnesium, lots of probiotics, and clay when we can fit it in. Whew! MichaelTampa thinks the tindamax may be too low for a 92 pounder. My LLMD would give more if I asked...what are other kids of similar size on? We are close to 80%, sometimes it seems better, but that is because we know all of the dos and don'ts, if you know what I mean. (Don't rush her, don't pressure her, don't buy anything from "fat people", do open public rest room doors for her, do wash hands when she tells us to, etc.) Sounds so crazy when you write it out like this!!! We are dealing with OCD only.

Thanks for your feedback, learning a lot here!

Laura

 

Hey Laure,

I was wondering what made you decide to see Dr. J as well as Dr. B in Albany. Do you think she is not quite well versed enough. We see Dr. B three weeks from now but I do have an appt with Dr J just in case in April. Your oppinion would mean alot to me because this 2 year battle has been crazy. You can PM me. Thanks Kathy

[Suzan]

I am currently waiting for the Igenex results for dd9 to come back. We a expecting to see her bands 31 and 34 chnage from IND to positive. I will post the results when I get them. I still don't quite understand how her test can become positive when she's doing so much better after 3 months on treatment.

 

So glad you had a good appt and are seeing great results.

 

Susan

[sf_mom]

My kids are on the following and we've been rotating antibiotics and building protocol all the way through. Our LLMD prefers Alinia over any other cyst buster and uses it as a baseline antibiotic.

 

2 of three kids are on: Cedax/Rifampin/Alinia 'cyst buster' daily

 

1 child is on: Azithro/Sulfmate/Alinia

 

Each has a little different protocol for supplements and herbs.

 

-Wendy

[laure]

My kids are on the following and we've been rotating antibiotics and building protocol all the way through. Our LLMD prefers Alinia over any other cyst buster and uses it as a baseline antibiotic.

 

2 of three kids are on: Cedax/Rifampin/Alinia 'cyst buster' daily

 

1 child is on: Azithro/Sulfmate/Alinia

 

Each has a little different protocol for supplements and herbs.

 

-Wendy

 

 

Thanks for the input Wendy!

[kmom]

I got to speak w/ Dr. J's office yesterday afternoon. Here's what I gathered from the conversation: So the Narcolepsy panel test is just a way of testing these HLA-D levels. Anyway, she said the kids don't have narcolepsy even though there are some positives on the results. What it does indicate is that something auto immune was caused by Lyme. I guess this is one of the patterns Dr. J sees in kids w/ Lyme and auto immune. So it just seems to be one more indication that Lyme and auto immune can go hand in hand.

 

@Laure-I don't know your LLMD in Albany but I can tell you we went thru the same thing. My husband, kids and I see Dr. Beals in MD and he's fantastic. But when we wanted to really explore/rule out Lyme last fall, Dr. J was the one I we wanted the kids to see. But, we had a 4 month wait to get our 2 kids in there on the same day. My mommy insticts were in overdrive and I felt Lyme had to be addressed even though our immunologist repeatedly told us their Igenex was negative. In the meantime found Dr. B in MD and I can tell you, he really got our lives back on track. But when it came down to canceling w/ Dr. J, we just couldn't pass up seeing him. We wanted that expert advice from a pediatric specialist. And for as much $ as we spent that day, it was totally worth it to get his undivided attention for 4.5 hrs. As far as meds, I'll copy/paste my DD 9's (67lbs)latest excel spread sheet where I list her meds/supplements:

 

Upon waking:

Pectasol Chelation Complex--2 pills

 

Morning:

Amox TR-K CLV 500 mg--1 pill

Azithromycin 250mg--1 pill

Rifampin 300mg--1 pill

organic raw food multivitamin--1 pill

DHA-Carlson for Kids--2 gel caps--Fish Oil=600mg,DHA=100mg, EPA=50mg

Vit. D3 5000 units--1 pill

Vit. C 500mg--1 pill

Tindamax 250mg--1 pill (Sat & Sun. mornings)

 

Midday:

Probiotics 5 billion active cultures--1 pill (2 hrs away from abx & charcoal)

 

Activated charcoal--2 pills (2 hrs away from all meds)

 

Night(split into 2 parts--dinnertime & bedtime):

Amox TR-K CLV 500 mg--1 pill

Azithromycin 250mg--1 pill

Rifampin 300mg--1 pill

Diflucan 100mg--1 pill (every other night)

DHA-Carlson for Kids--2 gel caps--Fish Oil=600mg,DHA=100mg, EPA=50mg

organic raw food multivitamin--1 pill

Vit. C 500mg--1 pill

Milk Thistle 175mg--1 pill

Low Dose Naltrexone 2mg--1pill

Tindamax 250mg--1/2 pill (Sat & Sun. evenings)

Probiotic Pearl 5 billion cultures--1 pill

Tagamet 200mg--1 pill (as needed for stomach & histamine)

 

*Bicillin shot monthly

 

Epsom salt and hydrogen peroxide baths, ibuprofen 200mg or benadryl as needed for herxing...glad to say, these are not needed much

[laure]

I got to speak w/ Dr. J's office yesterday afternoon. Here's what I gathered from the conversation: So the Narcolepsy panel test is just a way of testing these HLA-D levels. Anyway, she said the kids don't have narcolepsy even though there are some positives on the results. What it does indicate is that something auto immune was caused by Lyme. I guess this is one of the patterns Dr. J sees in kids w/ Lyme and auto immune. So it just seems to be one more indication that Lyme and auto immune can go hand in hand.

 

@Laure-I don't know your LLMD in Albany but I can tell you we went thru the same thing. My husband, kids and I see Dr. Beals in MD and he's fantastic. But when we wanted to really explore/rule out Lyme last fall, Dr. J was the one I we wanted the kids to see. But, we had a 4 month wait to get our 2 kids in there on the same day. My mommy insticts were in overdrive and I felt Lyme had to be addressed even though our immunologist repeatedly told us their Igenex was negative. In the meantime found Dr. B in MD and I can tell you, he really got our lives back on track. But when it came down to canceling w/ Dr. J, we just couldn't pass up seeing him. We wanted that expert advice from a pediatric specialist. And for as much $ as we spent that day, it was totally worth it to get his undivided attention for 4.5 hrs. As far as meds, I'll copy/paste my DD 9's (67lbs)latest excel spread sheet where I list her meds/supplements:

 

Upon waking:

Pectasol Chelation Complex--2 pills

 

Morning:

Amox TR-K CLV 500 mg--1 pill

Azithromycin 250mg--1 pill

Rifampin 300mg--1 pill

organic raw food multivitamin--1 pill

DHA-Carlson for Kids--2 gel caps--Fish Oil=600mg,DHA=100mg, EPA=50mg

Vit. D3 5000 units--1 pill

Vit. C 500mg--1 pill

Tindamax 250mg--1 pill (Sat & Sun. mornings)

 

Midday:

Probiotics 5 billion active cultures--1 pill (2 hrs away from abx & charcoal)

 

Activated charcoal--2 pills (2 hrs away from all meds)

 

Night(split into 2 parts--dinnertime & bedtime):

Amox TR-K CLV 500 mg--1 pill

Azithromycin 250mg--1 pill

Rifampin 300mg--1 pill

Diflucan 100mg--1 pill (every other night)

DHA-Carlson for Kids--2 gel caps--Fish Oil=600mg,DHA=100mg, EPA=50mg

organic raw food multivitamin--1 pill

Vit. C 500mg--1 pill

Milk Thistle 175mg--1 pill

Low Dose Naltrexone 2mg--1pill

Tindamax 250mg--1/2 pill (Sat & Sun. evenings)

Probiotic Pearl 5 billion cultures--1 pill

Tagamet 200mg--1 pill (as needed for stomach & histamine)

 

*Bicillin shot monthly

 

Epsom salt and hydrogen peroxide baths, ibuprofen 200mg or benadryl as needed for herxing...glad to say, these are not needed much

 

Thanks so very much kmom!! We are already using a lot of these, but the rifampin and bicillin shots would be new. Also the Diflucan, which would help me not worry about yeast so much. After 7 months of steadily increasing antibiotics, it is amazing she doesn't have an ulcer yet! Did Dr. Jones seem to individualize the treatment for your two kids?

[philamom]

laure- I'm sure kmom will chime in, but Dr. J does not address detox or supplements, at least not in our experience.

 

kmom- it's wonderful to hear things are going well for your children! Thanks for posting their regime. Do you use a specific vitamin D?

[lfran]

Wow -- what great information.

 

Is that what Dr. J put your DD on, or Dr. B, or both combined?

 

Thanks!

 

I got to speak w/ Dr. J's office yesterday afternoon. Here's what I gathered from the conversation: So the Narcolepsy panel test is just a way of testing these HLA-D levels. Anyway, she said the kids don't have narcolepsy even though there are some positives on the results. What it does indicate is that something auto immune was caused by Lyme. I guess this is one of the patterns Dr. J sees in kids w/ Lyme and auto immune. So it just seems to be one more indication that Lyme and auto immune can go hand in hand.

 

@Laure-I don't know your LLMD in Albany but I can tell you we went thru the same thing. My husband, kids and I see Dr. Beals in MD and he's fantastic. But when we wanted to really explore/rule out Lyme last fall, Dr. J was the one I we wanted the kids to see. But, we had a 4 month wait to get our 2 kids in there on the same day. My mommy insticts were in overdrive and I felt Lyme had to be addressed even though our immunologist repeatedly told us their Igenex was negative. In the meantime found Dr. B in MD and I can tell you, he really got our lives back on track. But when it came down to canceling w/ Dr. J, we just couldn't pass up seeing him. We wanted that expert advice from a pediatric specialist. And for as much $ as we spent that day, it was totally worth it to get his undivided attention for 4.5 hrs. As far as meds, I'll copy/paste my DD 9's (67lbs)latest excel spread sheet where I list her meds/supplements:

 

Upon waking:

Pectasol Chelation Complex--2 pills

 

Morning:

Amox TR-K CLV 500 mg--1 pill

Azithromycin 250mg--1 pill

Rifampin 300mg--1 pill

organic raw food multivitamin--1 pill

DHA-Carlson for Kids--2 gel caps--Fish Oil=600mg,DHA=100mg, EPA=50mg

Vit. D3 5000 units--1 pill

Vit. C 500mg--1 pill

Tindamax 250mg--1 pill (Sat & Sun. mornings)

 

Midday:

Probiotics 5 billion active cultures--1 pill (2 hrs away from abx & charcoal)

 

Activated charcoal--2 pills (2 hrs away from all meds)

 

Night(split into 2 parts--dinnertime & bedtime):

Amox TR-K CLV 500 mg--1 pill

Azithromycin 250mg--1 pill

Rifampin 300mg--1 pill

Diflucan 100mg--1 pill (every other night)

DHA-Carlson for Kids--2 gel caps--Fish Oil=600mg,DHA=100mg, EPA=50mg

organic raw food multivitamin--1 pill

Vit. C 500mg--1 pill

Milk Thistle 175mg--1 pill

Low Dose Naltrexone 2mg--1pill

Tindamax 250mg--1/2 pill (Sat & Sun. evenings)

Probiotic Pearl 5 billion cultures--1 pill

Tagamet 200mg--1 pill (as needed for stomach & histamine)

 

*Bicillin shot monthly

 

Epsom salt and hydrogen peroxide baths, ibuprofen 200mg or benadryl as needed for herxing...glad to say, these are not needed much

[kmom]

@ Laure--You made a good point. I sing the praises of Rifampin but the kids started Rifampin and Diflucan simultaneously so maybe cutting the yeast made a big difference too. We don't know how much yeast was playing a role. Our LLMD felt the kids weren't suffering much from yeast b/c they had been on probiotics and their tongues didn't have a bad white coating...not a perfect assessment but he wanted to put kids on Diflucan for 2 reasons: 1) b/c of all the abx's and 2)b/c the cyst that the spirochete hides in in the cystic form of Lyme is made of the bacteria's excrement which happens to be yeast so it doesn't necessarily "cystbust" but helps inhibit cysts from forming.

 

As far as Dr. individualizing treatment, it's hard to say. I am sure he treats according to the bugs plaguing each system. My kids have the same bugs so they are the same meds but my DS has a slightly lower dose of some since he's about 15 lbs less. For example, he's on 1/2 pill of Tindamax 2x/day 2 days/wk.

 

@Philamom-Yes! Exactly. Dr. J doesn't address detox and supplements to the extent Dr. Beals does. Dr. J was happy to see the kids were on Omega 3's and Vit. D but he never talked about detox. I feel blessed to have 2 doctors who compliment each other as far as treatment so for now we're sticking w/ both.

 

We don't buy all, just some supplements from Dr. Beals. The vit. D3 is by Xymogen. We're doing a little personal experiment in our house. DH says brand doesn't matter and is using Costco brand Vit. D3. I am using my organic raw food multi that has 6000 units and the kids are using the Xymogen and they getting some more in their multi vit. so we're going to see who levels increase the best. We realize other factors play a role but we're making it a fun contest.

 

@Ifran--That list is basically all from Dr. Beals since we started w/ him in Nov. Dr. J got a copy of the meds/supplements the kids were on up to the point in Feb. when saw him. He was in agreement but had us increase the Rifampin that was only given 1x/day only on weekdays to everyday 2x/day. It made things even better! Both docs decided Feb. was time to add Tindamax. So overall they agree but Dr. Beals definitely seems to want to boost the immune system more. Dr. J said, How do you do that? The definition of infections means the immune system is compromised. Nail the infection, boost the immune system. We think he's great at attacking infections but like Dr. Beals' approach to detox and immune system boosting which we believe is helpful. There are some changes we have made that we'll keep lifelong even after we finish Lyme treatment.

[laure]

@ Laure--You made a good point. I sing the praises of Rifampin but the kids started Rifampin and Diflucan simultaneously so maybe cutting the yeast made a big difference too. We don't know how much yeast was playing a role. Our LLMD felt the kids weren't suffering much from yeast b/c they had been on probiotics and their tongues didn't have a bad white coating...not a perfect assessment but he wanted to put kids on Diflucan for 2 reasons: 1) b/c of all the abx's and 2)b/c the cyst that the spirochete hides in in the cystic form of Lyme is made of the bacteria's excrement which happens to be yeast so it doesn't necessarily "cystbust" but helps inhibit cysts from forming.

 

As far as Dr. individualizing treatment, it's hard to say. I am sure he treats according to the bugs plaguing each system. My kids have the same bugs so they are the same meds but my DS has a slightly lower dose of some since he's about 15 lbs less. For example, he's on 1/2 pill of Tindamax 2x/day 2 days/wk.

 

@Philamom-Yes! Exactly. Dr. J doesn't address detox and supplements to the extent Dr. Beals does. Dr. J was happy to see the kids were on Omega 3's and Vit. D but he never talked about detox. I feel blessed to have 2 doctors who compliment each other as far as treatment so for now we're sticking w/ both.

 

We don't buy all, just some supplements from Dr. Beals. The vit. D3 is by Xymogen. We're doing a little personal experiment in our house. DH says brand doesn't matter and is using Costco brand Vit. D3. I am using my organic raw food multi that has 6000 units and the kids are using the Xymogen and they getting some more in their multi vit. so we're going to see who levels increase the best. We realize other factors play a role but we're making it a fun contest.

 

@Ifran--That list is basically all from Dr. Beals since we started w/ him in Nov. Dr. J got a copy of the meds/supplements the kids were on up to the point in Feb. when saw him. He was in agreement but had us increase the Rifampin that was only given 1x/day only on weekdays to everyday 2x/day. It made things even better! Both docs decided Feb. was time to add Tindamax. So overall they agree but Dr. Beals definitely seems to want to boost the immune system more. Dr. J said, How do you do that? The definition of infections means the immune system is compromised. Nail the infection, boost the immune system. We think he's great at attacking infections but like Dr. Beals' approach to detox and immune system boosting which we believe is helpful. There are some changes we have made that we'll keep lifelong even after we finish Lyme treatment.

 

 

Well, the way I see it, information is power, and I feel more in control the more I know. So it's great to learn the different approaches of different doctors... keeping the supplement industry in business to be sure though!

[adkmom]

Kmom - Thanks so much for sharing all that! I'll try giving you a call in the next few days. Your info. gave me some hope. Colin is still struggling with not being able to focus, aggression, opposition. Doesn't seem like much, but when it goes on every day it's exhausting! as I know you can all relate to. I don't think "outsiders" understand that. Glad you're all out there to talk to.

 

The only treatment we're doing is the 2 antibiotics and ordered some supplements. We have appt. Dr. J end of May. I'm hanging on

 

darlene

[mommakath]

Our stories are very similar. Dr. J explained to me that those narcolepsy results are something he sees a trend of in lyme / pandas kids. He guessed tey would come back positive on our kids as well. Yes on one, No on the other. But, the NO kid is really struggling. All intersting! Like how they think out of box and notice trends!