Hopeny

JAG10 we are seeing Dr. O'Hara too and I LOVE her. We ordered Pure liquid Vitamin D drops from the therapist/consultant upstairs from Dr. O'. The drops conatin 1,000IU in each tasteless drop so it would be pretty easy to give the 10,000 IU that way. DD hates just about everything I try to give her but does not mind the drops. I was putting them in a smoothie with everything else but got worried because it is 1 tiny drop we are giving that she would not get the full value so now I am giving separately and she is fine with it, Oops I just saw you wrote Vitamin A, maybe Pure makes those drops too...

Interesting, I am supposed to work up to 900 mg and was at 600 but am cutting back to 300 to see what happens. DD has been extra snarky and agitated since we bumped to 600, we are also using rifampin treating bartonella so it's hard to know what's what. The biofilm angle is interesting. I'll post if I notice a difference with the lower dose.

We are Dr B too, we have other docs for Lyme, supplements etc. the team approach seems to work best. We have a great group that does CBT in white plains, if its close enough I will pm you the details. They have a couple of therapists who work with pandas. Sorry you are going thru this

Fixit I don't think you are supposed to pulse rifampin for drug resistance reasons but pls double check me on that

Band 23 is one of those indicative Lyme bands, personally seeing my daughter suffer so much I would stop nursing if I knew I was reactive to that band to minimize any further exposure, and for a child that age I would see Dr J if you are not already . And also you should get treatment , and in any further pregnancies consider taking abx thru the pregnancy. That said not every kid gets it even if the mother has it. It's good advice not to panic and know you have identified a potential problem and will treat it. I recently found out my 3 yo also tests CDC positive with another igm band that is also an indicative Lyme band, after six weeks of abx for a bullseye, it's very upsetting but I am trying to keep calm knowing we are treating it and I am having faith that she will get well. Hang in

My son is 15 and weighs 135lbs. I started with just one hh pill from zhangs protocol. Did this for week one. Then 2 a day week 2. The last two weeks he has been on 3 a day. He has had herxes he's never had in the years we've been treating. symptoms he's never had before. I am positive it is getting to the brain where I know antibiotics weren't getting for him. We were treating bartonella for close to 2 years with different abx combos. His stretch marks had never changed untill just the other day I noticed they had faded some. Thank you, I think Nutramedix sells the same thing in liquid form. I am considering this at some point...we live close to NYC so I may end up just making an appt with Zhang to see what he says...My daughter did not have stretch marks until she started Rifampin, 4 days after starting she got some in the crook of her arm. They are lighter but still there after two months.

It works but it can cause psych symptoms so you need to monitor. My dd took it pre pandas and had no problems. I took it when I was pregnant for direct exposure to swine flu, I can't recall any issues

Saw this on the Lyme board, wouldn't it be ironic if this turns out to be something to help PANDAS? http://www.cbsnews.com/8301-204_162-57561481/giant-pandas-may-aid-in-fight-against-drug-resistant-bacteria/

I didn't read all of the threads but basically we have not disciplined DD over the past 12 months. Prior to me finding out about Lyme/PANS at my wits end with her I was contemplating boarding school, I was so at my wits end on how to handle her. She is much much better now and I do feel so guilty that I had thought about sending her away not knowing. Can't imagine what would have happened. That said, today she was being extremely fresh and nasty to me and her sister, after coming back from swimming (chlorine seems to set her off) and asking if she could wait for me rather than have to wait for me to look for a spot at the library - I pulled over, told her to get the "f" out of the car (really bad, I know. She didn't of course (not sure what I would have done if she did), cried, and has been wonderful since for the rest of the day. Go figure.

Just wondering, how much HH are you using with children and what are ages/weights?

That is so dissapointing anbout the Samento/A Bart. I decided to try the C with the magnesium to see what happens. I know D feeds Borrelia too, and she has had a great response on that. I hope you can get your DD off the abx soon too, I hope we all can

My niece saw Dr Shulman. She is extremely knowledgable and noticed a pattern over generations of families with her patients and strep, that's how she got onto PANDAS. She is a practicing pediatrician so that's a plus and a minus IMO. I believe she only uses one abx, zith, so that's a bit limited. I believe there is a Youtube video where she discusses her protocol. Eventually I brought my niece to Dr B because she had been on Zith a long time and could not go off it without tics returning.

I have been using Vitamin C for DD who is low on phosphoric acid which integrative Dr says can be part of the bone pain problem. I thought I was doing a good thing by ordering it from our supplement supplier, but it came today (Pure brand) and I see that it has magnesium in it. I know magnesium can be bad for Lyme. Does anyone have any suggestions? Should I use it anyway? I am thinking of starting samento, has anyone used with kids/any feedback? DD is just turning 9 thanks in advance

I'm so glad for you that you found the bartonella issue and are treating/seeing improvement. I am curious which Lyme bands may be bartonella specific, do you recall ?

Lyme caused foggy brain for my dd which has cleared up well after 7/8 months of abx

Just curious were all bands negative or do you mean the test was CDC negative? do you have a copy?

My ds12 sees Dr.K in Redmond for PANDAS which he's had for over a year now with little relenting. He got a bullseye bite reaction 2 months pre-PANDAS onset so now seeing integrated MD in Woodinville, Dr. Klinghardt, who is LLMD (Dr. K referred us). He also practices in Europe I beleive, every other month...is that the 'Dr K' you are curious about? I won't elaborate unless we r talking about the same Dr. Thanks yes its Dr. Klinghardt, I'm interested to hear your feedback.

I know typically it takes weeks/months for SSRI's to kick in, but I also know they can have some immediate effects too. Since your DS seems to have taken a dramatic turn for the worse, maybe it would be worth considering dropping the SSRI and sticking with the abx/anti viral as that seemed to help before. In my DD's case she started abx and zoloft at the same time. We saw an immediate improvement which I suspected was from abx but could not be certain. DD started shaking and overheating after a few weeks so I took her off the zoloft although the psychiatrist was not in complete agreement that it was the right move, and she has been fine so far with abx alone (and lots of CBT). My DD has a mutation that causes a problem with methylation, essentially she does not detox properly and the serotonin pathways do not work properly (I can't get my head around this but LLM understands it and we have a doctor treating it). So even with a tiny dose of Zoloft it was too much for her, I was worried she was going to develop serotonin syndrome. That said, some children definitely need these types of meds, each case is different. I am wondering if you could give a shot of just the abx/anti virals/motrin and see what happens? without the luvox? Also wondering if you could try an abx combo instead of just Biaxin, in our case Augmentin/Biaxin was a real miracle. Edited to add: I just read that dialated pupils can be a "severe" side effect of Luvox, I'm in no way an expert but that sounds worrisome as a mom

Philamom here is the link, we had a prescription for the Enhansa and I believe my drug plan actually paid for it : http://leesilsby.com/enhansa-homepage. I put everything in a smoothie, the taste is very strong so it needs to be mixed in well or swallowed. PhillyPA yes it is pharmanac. I was planning to ask her during our next consult if another brand is ok, as it was a fortune for the supplements and allergy drops on top of our other mountain of expenses (I think all in it was 500-600 in supps so the price of the NAC really hit me). However I am soo ecstatic about the progress in a short time that if its a good reason will stick with pharmanac! I'm actually afraid to even start the allergy drops for fear of messing things up. DD actually said to me tonight "Mom I think the medicine is helping me." First time in 12 months that I have heard that.

Hopeny- do you see Dr. O' for the MTHFR treatment? thx Yes Dr. O' for MTHFR and all of the supps, Dr B for PANS/asthma and Dr L in upstate NY for Lyme, Dr V on Staten Island if we bump into anything else. I really like Dr O' (thanks to LLM for her name), very thorough and very knowledgable - not an LLMD level but enough to help. I am going to bring my 3 yo to her too just for general immune support and her sensory issues. Great. Thanks for the reply. Hope your good days continue!! I have Enhansa in my cupboard- may have to dust it off. Did you experience die-off with it? I was seeing die off with Rifampin, DD started to rage. (never had like that before) OMG on my one mom's night out in like 8 years she called me, not exaggerating, at least 20 times. We also started the MTHF shortly after starting Rifampin/Zith. Started Enhansa, fish oil, quercetin, Burbur, vitamin C and back on D and now NAC- will never know if its the Rifampin but my gut tells me Enhansa has really been helping. DD is just seeming well. Pain is improving. Heel pain had started to improve mildly before adding the above just from Rifampin. The only possible yeast die off I have seen is the return of a compulsion DD has which is skin picking, she started that up again abot 5 days ago. Its very mild and I am not worried about it, I hope I am not over confident but I feel like we are onto something here, she is just better, the twinkle is back in her eye. Dr. O' said she thought yeast was causing a lot of DD's remaining issues and she seems to have been right. One last thing, not sure if coincidence or not but last time her pain improved was using Ahava dead sea soak and salt soap, I ran out and just got some more again recently. So I am sticking with that too. Good luck with the Enhansa, I am pretty sold on it!

My niece saw Dr Shulman, as far as I know she only uses one protocol which is Zith. Eventually my niece had to move to another doctor to expand the treatment. I should add that she was wonderful and they really liked her. We go to Dr B.

Hopeny- do you see Dr. O' for the MTHFR treatment? thx Yes Dr. O' for MTHFR and all of the supps, Dr B for PANS/asthma and Dr L in upstate NY for Lyme, Dr V on Staten Island if we bump into anything else. I really like Dr O' (thanks to LLM for her name), very thorough and very knowledgable - not an LLMD level but enough to help. I am going to bring my 3 yo to her too just for general immune support and her sensory issues.

We are 3 days in (at 300 MG NAC, doctor wants us to go to 900), so far it has been ok. We have been treating MTHFR for about a month. I don't want to jinx myself but these supplements have really been helping, I feel DD is pretty close to her normal self and her Lyme pain is GETTING BETTER :) Also she had a red rash on her bottom area that is gone, I suspect now that was from yeast which we have been treating with Enhansa. I'm going to go a few more days at 300 and then try 600. I am going to ramp up over 3 weeks.

Sosudden I am copy/pasting my response to another post about Band 41 below. Band 41 is not considered to be Lyme specific, however it can be the first band to show up positive. There seems to be a lot of cross pollenation between Lyme and PANDAS, so in my opinion if symptoms such as joint pain, lethargy, rage, depression, fevers, sweats, etc in a PANDAS child it warrants an evaluation by an LLMD. In our case we got the Lyme dx first and then got to PANDAS/Myco after further testing and evaluation - we are treating all and seeing different specialists for everything. From reading posts and my own experiences, our wonderful PANDAS docs are somewhat knowledgable about Lyme but not enough to diagnose it in chronic state. My post: "Just to add it is important to understand which lab did the tests. Quest tests for, if I am recalling correctly, 20 strains of BB while Igenex tests for 300. Igenex (and stonybrook if you ask) will report all bands, for reasons of conflict of interest on the part of the guideline authors in relation to patents they hold and investment/funding from insurance companies, the guideline authors failed to include some Lyme bands that are considered diagnostic by most LLMD's. So the Quest test may not report for example 93 (I'm not sure specifically if they report this one, this is an example) while this band has been shown to indicate Lyme in something like 100% of patients where it is positive. My recommendation for you would be to pursue an evaluation with an LLMD and additional testing by Igenex or Stonybrook, as Band 41 can be the first to show up. It also cross reacts as Dr J told me with hundreds of other infections, so most LLMD's usually disregard that band and focus on the others mentioned. Good luck"

Just to add it is important to understand which lab did the tests. Quest tests for, if I am recalling correctly, 20 strains of BB while Igenex tests for 300. Igenex (and stonybrook if you ask) will report all bands, for reasons of conflict of interest on the part of the guideline authors in relation to patents they hold and investment/funding from insurance companies, the guideline authors failed to include some Lyme bands that are considered diagnostic by most LLMD's. So the Quest test may not report for example 93 (I'm not sure specifically if they report this one, this is an example) while this band has been shown to indicate Lyme in something like 100% of patients where it is positive. My recommendation for you would be to pursue an evaluation with an LLMD and additional testing by Igenex or Stonybrook, as Band 41 can be the first to show up. It also cross reacts as Dr J told me with hundreds of other infections, so most LLMD's usually disregard that band and focus on the others mentioned. Good luck