fightingmom

^what she said!!

I think it could be all 3. Zithromax is what "saved" my son in the beginning (right after we found out it could be PANDAS, and not bipolar, or worse.) He was better within hours (and that happened 2 more times.) Also, the zinc, Niacin, and D3 can also have that effect, and when you combine all 4.... Enjoy it all. And, I'm glad I was right I have to admit, though, I still sometimes feel like losing it with them. Long term, though, unfortunately the LD will have to be addressed, but not necessarily all at once. Yep, if I can get him tolerable, I'm heading for the lyme next. I feel if he's got it too, with that in the way, it will be impossible to ever get his immune system in check. I know how I feel, and I'm not even PANDAS on top of it...all of this crap compiled together is a giant snowball... And, can I just say it makes me feel SO much better to know I'm not crazy and that between all of these things, something kicked in for this kid!!

so nice to know I am not alone and that rational and calm statements like the ones you stated above will cause your son to re=evaluate and turn things around. Hope we get to that place. you were right, by the way....I still have our pm's and just read one this morning.

And, for us this is interesting: http://www.surfingman10.org/niacin.html

inositol hexanicotinate?? the bottleI bought is a combo of both. I just read this, too: "Supplement the form of niacin called inositol hexanicotinate. It can cross the blood brain barrier more effectively than niacin. It has no flush, while niacin has a flush. Niacin can increase cell membrane permeability. Increasing cell permeability can improve the ability of supplements to penetrate into cells." -from this website: http://www.restoreunity.org/natural_method_antihistamine.htm

So, I was doing some digging about niacin and glutamate and came across this link: http://mthfr.net/mthfr-mutations-help-wanted/2011/09/09/#comment-85 Here is the most relevant info. for this discussion:

Off topic a bit, but... What the h*ll is this from?? This morning my son got up on his own -- he heard his alarm right away, got up turned it off and got ready for school (mornings are battles here). He even came to my door to make sure I was up. Ok....got ready this morning with no complaining. Took his meds without even sighing or complaining about them or anything being new or changed. I noted it mentally, but you know how it goes. Calls me on his way home (we are a block from school). Asks about my day. Tells me he had a good day at school, and all about how his teacher came in with her new baby, even said the baby was "cute". Came home from school. Asked me about my day. Told me where he planned to go with friends. He came down to take his meds, sat at the island and asked me if I wanted him to pick me up an iced coffee on his way back home today (never have I asked him to do this, and don't know where the gesture came from, but it was very nice and i was shocked). On his way out the door he tells me he is "feeling nice" so if i need help with anything when he gets home to let him know. Well, he leaves and forgot to take out the dog. I call his phone to catch him, and I see him peddle away on his bike and I KNOW this is going to send him into a tizzy, don't dare interfere with what he's got going on especially if it has to do with his friends. He didn't answer, but was on his bike...so I sent a short text "forgot to take the dog out " -- I expected what normally happens...all of a sudden, he's at the door...came back...without even saying a word. Takes out the dog and then yells "Bye" very merrily as he leaves for the 2nd time. THIS is the kid I used to know. The one I saw for about 10 days after steroids, but what in the world brought him back today? Changes since yesterday (mind you at 9:30pm last night I left the house in my PJ's and drove down the street just to get away from him) --- He started Zithromax in addition to continuing the Augmentin I dosed him up good with Vitamin D3 since his levels are so low and I read that vitamin d plays a role in glutathione and has significant anti-inflammatory properties. Gave him 4,000 IU last night and again this morning. Gave him zinc last night, and again this morning Started niacin last night and gave again this morning Advil last night, none this morning So...I added Vitamin D3, Zinc & Niacin and one stinking zithromax Something in here is helping and fast. He was on the fast track to the hospital over the past week or so. Now he's how he was with the prednisone.

I am stepping away for a minute, and will post again, but that 3-4am thing is so strange. I suffer from what has been called insomnia...but I FALL asleep just fine. It's just that I wake up around that time often and can not fall back asleep. I often wander down to the couch just to avoid waking up my husband from my tossing and turning or going to the bathroom or getting a drink or whatever else I decide to do because I'm so wide awake. Weird.

I better find that post!

Count me in. SAME THING! Also, can tell from moment of wake up what kind of day it will be!

This is getting interesting. Please report back what you find with the doc/labs and if you do wind up seeing any results.

Interesting!!! I know I recently noted that I saw selenium in a supplement i already have - I need to look through my home pharmacy and see what it was in! Thanks for posting this.

Thank you SO much! This was very helpful and insightful for me. I am currently researching LLMD's and trying to figure out how to budget this because we already have thousands of medical bills piling up already. But, we will get there I think - hope! I sit here typing this with pain radiating down my back, my feet hurt and my neck is burning. I have contributed this to my work for years and running a business and being in school full time on top of all the other craziness life has brought with it. I'm having a major - holy crap - I'm REALLY sick moment. As, many of my blood tests with exception of white blood cells always showing infection -- are always normal and I'm always dismissed...besides all my female,endo,cyst,ovary stuck to my intestines issues. LOL. Those they are able to open me up and find real proof off. Everything else...I've been pushed off and then haven't pursued with much effort either. At least now, I can give myself permission to be tired and acknowledge that it may be time to stop being super woman and sometimes allow myself to do nothing. I have to say, since my surgery 3 weeks ago I have not been the same. From a surgical standpoint, I healed fine. But each day I grow more tired and weak and couldn't figure out why. Just a trip to the grocery store is wearing me out. Like really...to the point of exhaustion. Maybe it's this that has been complicating things. Crappity, crap, crap, crap.

Get your tissues ready for the poem. Or maybe I'm just over emotional right now. This was FANTASTIC. A real, easy to follow, laymens presentation. I will keep this one in my bookmarks. Thank you!!

I didn't get a chance to discuss any connection. The appt turned into more of a whirlwind I was not expecting. Lyme stuff, my labs, my sons labs, etc. and by the time we were done the lab was closed and I was so sidetracked I lost all my words and didn't think about MTHFR or histamine until I got home. I'm pretty annoyed with myself over that. My son tested negative, but on the western blot, and after months on antibiotics, so probably not the most reliable. Also, I have been reading that IF you have had lyme for a long time, your body may stop building the antibodies to it (much like how in strep this happens and a lot of pandas kids have pandas but no elevated strep titers) and they may not show at all after a while. I can say that I have been sick for 15-18 years and now that I know what I have learned about myself, I am VERY suspicious that this has been my problem for years and years and it's very likely my son was born with lyme. It could have explained so much. He was sick 1 week after birth and hospitalized for a week for infection and high fever, and they never could give a diagnosis, and it's been one thing after another since thing. So, I feel like maybe the IGENEX is better utilized for him, to try to reveal something, as from talking to a few folks and reading up all night, it seems that testing for band 34 along with mycoplasma pretty much guarantees a long standing lyme infection... Have I said "OH SH*T!!!" yet? Yes, we are supplementing with D3 now, and I'm going to carefully select some other things to add. I realize now that things are getting much deeper than I thought and we are really sick. It's going to take a lot of peeling back the layers I think to get him and i completely well.

Do any of you have thoughts on the low IgG? How concerned should I be about this? And, I am antibody illiterate. Does the 273 number seem high or low? And, would two courses of antibiotics (amoxi and augmentin) in the 4 weeks prior to lab work have altered this at all? Anything else in there you guys see? Labs are not my strong suit.

Well, we saw Jennifer and she was very nice and spent a lot of time with us. She was very thorough and based in my symptoms and labs I have officially become a patient as well...great! We saw Dr. B. poke his head in for a second after Jennifer left to consult with him about a plan. They spoke about 5 minutes and while it wasn't much of his time, I did feel like she gave us so much of her time and compiled everything to present the important things and still get his input. So, in summary, I actually was pleased with how things went and overall we ended having more attention. I really like Jennifer, too. We didn't get to have any labs done at the end because the lab closed. Damn it. But we go back in 4 and 5 weeks for food allergy tests and some more substation environmental test called "ID". Son still has a sinus infection and so do I. We both are on augmentin again and they added zith to my sons abx. I have a phone consult set up in two weeks to check and see how that went. I was told to continue advil as needed until then. His labs showed: DNase-B titer is 273 (is this good or bad?). He has lost his streptococcus pneumonia immunity His total IgG serum was 705 which is low. His vitamin D was low at 17 Albumin was slightly high at 4.7 Now for me: IgG serum was just within normal limits by a few points. DNase-B was 114 ASO and ANA "negative" Influenza type B ab IgG was 0.17 L. Mycoplasma pneumonia IgG was high and > 5.00 All but 2 out of the 14 subtypes for Streptococcus pneumonia antibodies were less than 0.3. And the best for last: a positive on western blot for band 34. They said usually this one doesn't show up even in people who have positives on other bands and when it does it's very indicitive of Lyme. Sent me home wih kit to have igenex done and suggested LLMD. I don't have a clue where to start with our labs. I don't understand why we are both chronically I'll and have constant infections and show no antibodies to anything pretty much ever, even after vaccines. Makes no sense to me. And how serious is this low IgG? I guess I have a lot of researching to do tonight.

We had labs drawn in his office last visit. I called for results and was given a hard time. I didn't like that either. I also had a call go unreturned by them on their dr message line. We will see how this goes. I'm not being pushed around today that's for sure, so we will see how this goes. Lol

No. He didn't say a word about that. The women at the front desk he handed my file to said it, and then I corrected her -- and she looked down at my file and said, no he wants you to come back and see whatever her name is. She could tell I was not happy with that and then said that he would be available if we needed him as he would be in the office.

We saw him initially, our follow up appt is scheduled with his PA - he is there in the office and I'm assured he will be "available" but I still don't care for it...

That's the thing, I have faith in him. We've only seen him once. I think we should be seeing him for the follow up and discuss all labs. I'm not thrilled with this, but what else do I have? My monday classes will be over in 3-4 weeks, then I'm hoping to get to a parents meeting! Thanks for the reminder!

Vent, vent away. If we couldn't vent, I'm convinced we'd all be locked up at some point! Hope you make some progress with the LLMD and with Dr. B on the 25th.

We are seeing the PA, but i was assured Dr. B. would be available if we need him. Um, yeah, we need him. I have to be honest, I was not too impressed with that. We will see...if we get there...and we will see what happens while there. LOL I'll pm you my email, too! Oh and he'll straighten right up in front of the doctor. The only thing he absolutely can not help himself from doing is correcting me. At least 5 times he will correct me when I explain his symptoms "No, i don't". "That's not why" etc.

I have videoed him before and will do that again today if he continues. I'm locked in my office right now and he's parked himself outside my office door to harrass me through the door. It's exhausting. He didn't want to get up, but now he has no problem sitting on the floor outside my office.

Really? You've made a lot of progress in a year, and your son started when he was 14 then, too? Oh you give me hope!! May I ask what you have seen the most success with?