Appt w/ Dr. J tomorrow

[kmom]

I am getting ready for our road trip. Thank goodness it's a beautiful day/week. I always feared this 4 month wait would arrive w/ a Feb. blizzard! My kids have been treated for PANDAS since May/June and started Lyme treatment end of Nov. We love our integrative MD but feel like we can't pass up the opportunity to meet w/ Dr. J. and get his expert opinion. Any advice for us? We have a 2 hr. lunch break between the kids' appointments. Any good place to grab lunch nearby? Does he lead the questioning during consult or should I have my list of questions ready to fire? I am curious as to how he will handle IVIg since they both fall in the PANDAS range on Cunningham test. Does he push IVIg? Kids had one round back in Oct just as everything was getting very Lymie. Does he had a play area for the kids or should we have laptops and movies ready to roll?

[lyme_mom]

I am getting ready for our road trip. Thank goodness it's a beautiful day/week. I always feared this 4 month wait would arrive w/ a Feb. blizzard! My kids have been treated for PANDAS since May/June and started Lyme treatment end of Nov. We love our integrative MD but feel like we can't pass up the opportunity to meet w/ Dr. J. and get his expert opinion. Any advice for us? We have a 2 hr. lunch break between the kids' appointments. Any good place to grab lunch nearby? Does he lead the questioning during consult or should I have my list of questions ready to fire? I am curious as to how he will handle IVIg since they both fall in the PANDAS range on Cunningham test. Does he push IVIg? Kids had one round back in Oct just as everything was getting very Lymie. Does he had a play area for the kids or should we have laptops and movies ready to roll?

Dr. J has a small waiting room with books in it. Kids can hang out there. Might want to bring something else to occupy them like an ipod. Dr J does a thorough physical exam. He also spends a lot of time chatting with the child. He really takes his timeand that surprised me a little b/c we are used to being rushed in doctor's offices. He does this to put the children at ease and b/c he is really interested. W/ my kids he asked them what sports they played, which one was better, etc. What position they play, who fake crys, who fights, so funny. The kids thought it was hilarious. My son was so upset about drawing blood that he held his hand during it. What a nice man he is. He knows kids and how to talk to them. i always had my list of questions with me but you won't need to fill the time with it. I would just watch what he does and listen. He does not always explain what he is doing or what he thinks so ask if you want to know. He will make them blink their eyes one at a time and watch to see if they move just their eye or the whole face. The latter is a sign of lyme. There is a pizza place that is pretty good and about 6 blocks away on some main drag. I wish I could remember the name but I think it is a greek name. Pizza is very good and they also have lots of other stuff. You would have enough time to go there. Other than that there is not much right next to his office. We stayed at the omni hotel which was an easy walk. IVIG never came up with my kids but they were not "PANDAS" either. You will not regret seeing him if for no other reason to have him do the physical exam and see what he says. He likes to do a lot of lyme and coinfection testing with every visit which can get expensive so be prepared for that. Please let us know how it goes! Good luck!

[kmom]

Thanks for the info!!!

[philamom]

kmom-

Dr. Jones has a dvd player (or vcr--not sure which) in his small office, so you may want to bring a movie--his selection is geared to the younger ages. I took my mother with us to the appts. and asked to speak with him alone first...it was not a problem. He is very kind and does a wonderful evaluation. He spent almost the same time at our follow-up as the initial appointment. He believes you should continue IVIG if it is helping, but does not push it. He recently told us that some of the families he is seeing for pandas/lyme are having success with IVIG every 8 weeks, some at 3-4 months, and some not at all. Basically, the same as we've learned here. Good luck tomorrow!

[KarenF]

Best wishes!! Praying it goes really really well!!!!

[kmom]

If I were any older I think I'd be in love. Dr. J is just the nicest, sweetest man. My kids acted like he was their long lost great grandfather. I have never seen a doctor be so warm and loving. How refreshing. And I was completely impressed by the fact he's up there in age but he knew their labs inside and out w/o checking back! He knew their Cunningham results etc, right on the spot when it came up in conversation. We had one 2 hr appt in the AM and the other 2 hr. appt in the afternoon(although we chatted a little past that). I will not deny...it is an expensive consult/evaluation especially times 2 but he certainly made the time spent worth it. My DD is not a fan of bloodwork at all. In fact, the last time she had it in Nov., she went into vocal tics(like a "buh buh buh" sound) about 30 mins after the bloodwork which lasted a little less than an hour. But Dr. Jones worked his magic and had her relaxed and laughing as he stayed w/ her every step of the way holding her during blood work.

 

I got some clarification on PANDAS/Lyme connection which has boggled my mind. He was pretty much on board w/ kids' treatment thus far. He was glad to see we saw an LLMD before we could get in to see him and get the kids' treatment started 7 wks. ago. It's made a big difference already. He had a few differences of opinion on meds. He wanted to keep kids on same dose of Augmentin and Zith but doesn't like Rifampin (targeting Bartonella) to be pulsed. They currently take 1 pill (300 mg)1x/day Mon-Fri. He wants them to take 1 pill 2x/day everyday. He didn't think they needed a Bicillin shot either which our other LLMD wants monthly. And he wanted to add Tindamax even tho our LLMD mentioned Flagyl. We had a whole discussion on Tindamax and the fact I heard it was linked to cancer. He explained his stance and how I may have heard that but he explained why it's false. I'll probably research that some more but his explanation made sense. I took so many notes, I can't even think straight about it all but bottom line, glad we have his input plus good integrative LLMD getting us to the finish line together. I think between the 2 docs and us we'll have a good solid treatment plan in place. Just need to absorb it all and then make a few tweaks.

 

BTW, we came out of the afternoon appointment, to find our car was missing. Not kidding! Gone! We thought...STOLEN??? TOWED??? It was the latter! So to add to the very expensive day, we had to pay $92 cash only to get our car! It was ultimately my DH's fault. He was told he was in the wrong lot and was directed to another but there was a misunderstanding between he and the guard. He ended up parking in the lot just behind Dr. J's bldg. Division wasn't clear to DH. The manager of that bldg.felt terrible b/c of the misunderstanding and was kind enough to drive him to the lot so we could cancel the cab we called originally. Bad timing...the delay caused us to hit CT, NY and NJ rush hour... I focused on the great day and not the pain in the butt ending!

[MichaelTampa]

Glad the appointment went well. Have never met Dr.J, but have only heard great things about him.

 

Just wanted to toss in my two cents regarding pulsing rifampin. I recently ran across some conversations of people pulsing factive. Factive is a fluoroquinolone (similar to levaquin, which is more well known), and is used to treat bartonella but is also active against borrelia. Anyway, some doctors were pulsing factive, but the results were not good, and some were moved to daily. I have heard of pulsing for borrelia, and the life cycle there is much longer (28 days), so the theory of pulsing feels like it can make more sense. The life cycle of bartonella is so short (daily? 3days?), that pulsing anything to treat bartonella would seem to just lead to flairs and backslide during the period the person is off. Perhaps in the end it could still work, the theory behind pulsing is to get them more active and vulnerable for when you do take the drug, but just seems like, even if it does work, it would have to be a pretty rocky ride.

[kmom]

Thanks MichaelTampa! Your explanation makes total sense. I'd be thrilled if this switch makes them progress even more. They still have moments of "not feeling right", some buzzing in arms here and there, overwhelmed here and there w/ homework, tiny bit of anxiety but I try to decipher between Lyme induced or just typical kid stuff--I have to remind myself they are kids and not perfect specimens! You get reminded of what great kids they are when they sit in Dr. J's office for a total of 4.5 hrs yesterday, are very well behaved and he keeps telling them how smart, kind and well behaved they are. He boosted their egos and he got many hugs from them for it. He just has a special rapport w/ patients. I want to rename him "The Lyme Whisperer"! Just a neat neat man. When he says in Under Our Skin it's his calling, he's exactly right. Very intuitive. I could go on and on! So back to pulsing Rifampin...maybe that's why we see symptoms pop up here and there but never a distinct pattern. Looking forward to see how 2 doses everyday goes. We were sold on that change on the spot. We figured it was reasonable and made sense.

 

BTW, not sure if you read but you were so right on about checking my supplements. They were causing my 10 days of queasiness! I had switched digestive enzyme brands and never made the connection till you suggested it. So it wasn't a sudden 10 day herx, just double the strength of digestive enzymes. Switched back to 1st brand I used. I am going to have to start calling you Dr. Michael! No but seriously, thanks for the sound advice.

[sf_mom]

Sounds like you had a wonderful visit!!!!!

 

Will you continue with Bacillin Shots? Our Dr. does not pulse Rifampin either..... our younger daughter takes it daily. BUT, he does pulse other antibiotics to treat Bartonella. Another thing our Dr. does a little differently is he treats daily with Alinia 'cyst' buster and he might eventually pulse that as well. I was on Tindamax for 12 weeks straight and now doing three weeks on three weeks off. I find our Dr. rotates at least one antibiotic every three months or so, builds protocol over time and keeps my children all on different treatment plans looking for responsiveness. He rotates my children towards an antibiotic once it works for one. So, its a little crazy to keep track off...... We are moving away from Azithro and towards Cedax/rifampin.

 

Sorry about the car. Will you be seeing Dr. J every 12 weeks? Between the two, you are in really good hands to get your kids well. Did he give you any timeframes?

[KarenF]

I am so sorry you had such difficulty with the car. You have such a good attitude though.

 

I am glad you received good answers from the doctor. I wish I could contribute more but am thankful there are such knowledgable people giving good feedback about the pulsing.

 

May things go in an upward progression!

 

Best,

Karen

[lyme_mom]

When you say dr j doesn't pulse rifampin are u saying he gives it 7 days a week? We have used him and two other llmds along the way and he was the only one who wanted my son on two 300 mg rifampins a day. The other two thought one was enough I think my son took it five daya a week w jones and the other doctors and took Azithromycin on the weekends. He took rifampin at two different times. The initial and lower dose of rifampin helped him a loy. We didn't really notice a difference the second time he was on rifampin but my son is well now so who knows what helped. I think tindamax made a huge difference for my son. We live dr j -so wonderful that you got to see him. He is a saint and the medical board should learn from him, not harrass him. There will be a special place in heaven for that man when he goes.

[kmom]

@ SF Mom--not sure about Bicillin shot. I want to talk w/ Dr. Beals about the purpose again. The kids have only had one thus far. We put it off before Christmas b/c we were traveling and afraid of the herx and things were at a decent place just by adding the other Lyme Tx. Our goal was to let the kids have a decent trip to FL, visit family and feel better than they had. We weren't sure what the Bicillin would do so we waited till after the new year. They are due for shot #2 this Fri when we travel to MD. If anyone has advice on Bicillin, would love to hear. We are schedule to go back to Dr. J in 16 wks. He seemed fine w/ us seeing Dr. Beals. Said it was up to us and how everyone has a little different approach to Tx. He did say too many cooks in the kitchen can be a recipe for disaster but he was perfectly fine w/ us continuing to see Dr. Beals. (It felt like when you have another hair dresser at another salon touch up your highlights! Like you are cheating on your hairdresser! We were cheating on Dr. Beals! )I like how Dr. Beals healthy immune system approach combined w/ Dr. J's experience. Timeframe was broad. Dr. J said typically 1-3 yrs. for the kiddos. I think he will might revamp his view when he gets latest blood tests back. Dr. Beals told me last time (Jan7th) that 3-6 months from that day he's hoping I am at my 11th hr of Tx and that when my CD 57 score gets above 150 but ideally 200 and haven't herxed for 2 months, I'll be done. He didn't speculate too much on kids but 1st appt mentioned by end of next summer. I guess he took into acct the amt of time they were on abx for PANDAS.

 

@Lyme mom--Yes, Dr. Jones doesn't think the Rifampin is working to the max just 1pill/day 5 days/wk. He wants it 1 pill in AM and 1 in PM everyday...not skipping weekends like we have been. Glad to hear Tindamax made a difference! And yes, he seems like a sent. Some people just have that special touch and compassion. And it's so nice to see a doctor enjoying his work, especially at his age. You can tell by his smile and the way he jokes.

[philamom]

kmom- glad your appointment went well! He is a wonderful man! My daughter brought a littlest pet shop toy to the office and named one of her dog's after him (it was one of the dog's with all the wrinkles--chartese??). Anyway, he got a kick out of it!

BTW- my husband has a special bottle of Captain Morgans waiting for me when we get home to de-stress me of that drive.

[sf_mom]

You won't be the first to see two LLMDs. I have heard the Bacillin shots are good for mycoplasma. It will be nice to hear what Beal's says about the shots at your next visit.

 

I thought I was doing great with treatment too until I started Enula 11 days ago and all my symptoms came raging back. I was told another 5 months without co-infections..... but it appears I have one so at least another 10 months.

 

For our kids, least another 15 months for the twins and have no idea for our older son but speculate another year. Anything less than those timeframe will be a pleasant/frightening/scary surprise.

 

Nice update.

[kmom]

You won't be the first to see two LLMDs. I have heard the Bacillin shots are good for mycoplasma. It will be nice to hear what Beal's says about the shots at your next visit.

 

I thought I was doing great with treatment too until I started Enula 11 days ago and all my symptoms came raging back. I was told another 5 months without co-infections..... but it appears I have one so at least another 10 months.

 

For our kids, least another 15 months for the twins and have no idea for our older son but speculate another year. Anything less than those timeframe will be a pleasant/frightening/scary surprise.

 

Nice update.

 

I thought the Bacillin was geared toward the PANDAS but honestly can't remember...it was backin Nov. and I had major brain fog. Nice to know it targets Mycoplasma too. No one seems to focus on the IgG MycoP scores. I understand it means past infection but my DDs went from neg. IgG & IgM in June to positive IgG in Sept. Just seems strange. I was positive for IgM in June (we were just checking family when on DD's daughter's symptoms surfaced) and I was even a little highter in Sept for my IgG. Dr. J said you always consider positive IgG and IgM for Borrelia and Bartonella and maybe even other infections. Could that be true for MycoP???

 

Sorry to hear about the Enula making you feel worse. Is that for parasites?