SSS

One time when my dd's gut was really backed up, her DAN! Doctor at the time said: Time for a 'gully wash' and he had me get the liquid magnesium citrate from the local drugstore off the shelf (it's like $1.99, glass bottle) and I gave her a whole bottle of it throughout a day: Totally worked! (for some reason this liquid works different than mag citrate capsules) Poor guy. Sounds like he might have a blockage if he's not eating now, either :-(

My little .02 cents: Don't let him stay constipated! All the gunk backing up and getting re-absorbed. I like Oxy-Powder- 2-3 at night before bed, wonderful clean out. Magnisum citrate seems to work at first (our experience) then the body gets used to it. Hang in there.

I'm a fan of some James Patterson fiction books, so I read this one awhile back. I did not care for it, and I'll tell you why- the boy 'just seemed to grow out of it' 'mind over matter, and it was fixed' This was my impression. Not realistic, IMO.

Could be all of your incredibly hard work coming to fruition :-) Yea!

I don't know anything from personal experience, but everything I've read she has put out is amazing. My own LLMD had referred to her advice/experience.

Yes, it happened to me last year on Doxy. I am sorry to say this, but for me, the burn took a long time to go away, like 6 weeks. Stopping Doxy won't help the burn, but it has got to be hard to be on in the summer. Maybe you can switch to Amoxicillin and Biaxin? Not sure where you are at. I took a short walk on Doxy, fried my nose. Looked like Bozo the clown. And then it peeled for 2 weeks. Lovely. My hands (knuckles) got the sun while driving. Not fun. Sorry :-(

*You know, I am not really sure, but I would double check. When my dd got IVIG, our prescribing Dr. would not sign off for it (prescription for it, as we had it done locally here where we live) until he specifically got a copy of her IGA to make sure it was not low.

Yes.

Sometimes a high Bun ratio can mean dehydration.

If you google 'neurotransmitter testing' you will see a few places to get it- We had it done through our last LLMD. It will give you a recommendation for natural supplements through (made by) Neuroscience depending on the results (like: 5-HTP, Kaviance, etc.) I did try the supplements recommended, $, to no effect and made worse. This doesn't happen for everyone! So I did, after years of not, resort to a prescription med prescribed by another physician - we were in a dire place, and it has helped. I happen to use Trienza digestive enzymes, it has many different enzymes to help break down proteins, carbs, stalactites.

((cyber hug)) I'm sorry :-( One thing that has been on my mind lately... If the Mother has Lyme (and in my case, didn't know it, therefore not on treatment during pregnancy) if the Mother breast feeds, does she pass on the Lyme antibodies through the breast milk? (and yes I know a spirochete can pass through breast milk) Anyway, I glad your son is nearly 100%, that is wonderful---

Hi- My dd is double A1298c- so I see where it can say trouble with dopamine and seratonin (meaning not enough) But I had a neurotransmitter test done on her, and her dopamine was so high off the charts, AND seratonin, our Dr. at the time was alarmed, and made a special call to me. Now, some may not put stock into that test (urine) and, my dd does seem to go against the grain on tests, but...it made sense to me that this was/is true for her. The A1298c has always somewhat eluded me- and since she is double, I have tried to look hard at it. Years ago I tried supplementing with methyl B-12, we had horrible backlash, like she was on crack. I tried more than once- Over the years of special diets and much supplementation, I really do feel at this point she is not deficient - although still gets a high quality multi vitamin every day. I understand the MTHFR mutation having to do with detox, producing glutathione end product, which is the 'mecca' of what the body produces/needs to stay healthy. I always tried and incorporated detox methods with her over the years. The other thing with A1298c is ammonia - body producing too much- from proteins. You can test for high ammonia, and a natural supplement to help bring it down is Yucca root. I still give my dd digestive enzymes with each meal- partly because I took her off GF/CF after 2 years, and, I think it does help- I have starting taking 1 before dinner (a meat meal, I have at least 1 gene of A1298c) and it helps digest... Ramblings.

Well, I love Dr. Jerry. I watched part of this today (can still be seem at MendingAutism.com, and don't let the word autism throw you.) If you are new to PANDAS/PANS, I thought he did a brilliant job explaining it. Best, S&S

Hi- this is a free Webinar given by a DAN! Dr. my dd and I worked with for a long time in the past: 'We wanted to remind you Dr. Jerry’s next free webinar is this Wednesday, 6/13/12! Dr. Jerry will be talking about PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. Please join us at MendingAutism.com to watch the webinar! Feel free to share this webinar with any of your friends who might be interested.' (At MendingAutism.com 6 pm CA time, 9 pm East Coast, 6/13/12)

Yes, I am thinking of running the Advanced Lab test on my dd. Honestly, I'm scared to, and it is disappointing about it not determine co-infections, but the photo of the spirochete and 80% accuracy is pretty darn good, compared. I have stopped treating my daughter- no herbs, and she has been off antibiotics April 1st, tried to put her back on for a week in May- awful. I shared on here we were having extremely unacceptable behavior at home, and after 3 1/2 years of treating her medically, decided to try Riperdone- it has helped. I'm afraid to jinx, and this is probably not popular on this type of board, but she has been wonderful since I stopped treating medically- happier and sweeter than we've seen. Not 100%, but I've never really seen 100%. Is it possible for her to be completely 100%? I don't know. I personally am in the thick of medical treatment with an LLMD- and when I took dd there last month for advice, really, it was left up to me- and my LLMD doesn't really treat children with Lyme, there are so many other variables to it for him. I won't do more Igenex testing on her, although Igenex was clear positive on me, not on her, but the Lyme only bacteria bands present. So, what to do? Keep leaving things alone, and have it good? Will it stay good? Sorry Susan, which I had advice, I can sure relate.

Great read. My favorite lines were: 'You have no idea what your talking about' (or, what I'M talking about, lol) and, 'Just show up and do the best you can.'

In my dd7, die off looks like PANDAS, whatever that means. Hyper, IRRITABLE, impulsive, vocal noises (or tics?) just to be irritating, not sleeping well- she will often 'take it out' on little sister- holds it together at school- stomach pains. Anxiety. Her OCD has greatly improved, now it comes out by asking for verbal re-assurance about a situation- but manageable. Sometimes a binder helps, taken 2-3 hours after meds, then make sure the bowels move. All the other detox stuff- liver support - milk thistle, glutathione or pre-cursers, Epsom salt bath or cream, Burber drops, some homeopathic drainage, ibuprofen. For me, first time I treated Bartonella for myself, I was on Levaquin for 7 weeks- it was bizarre. I felt like I pulled away from from family (depersonalization, I've heard it called) wanted to be left alone, my legs hurt a lot- Bartonella can be quick to irritate me, too- Anxiety as well - I do see progress in myself, like I've mellowed out- I've even had both my Mother and MIL tell me in the last 6 months they feel closer to me, I'm more open. Calmed down. Not always, lol, but.... Few thoughts on Bartonella. Hang in there---

I used Bolouke for a couple of months earlier this year while on some oral combinations of antibiotics for Lyme - I took 1 pill 2x a day, and really believe it helped penetrate deeper, as it 'thins the blood, gets fibrin out of the way' (whatever that means, lol) It was doable and okay, but I had been on some of those medications before. If I put my dd7 back on antibiotics (she is off right now) I am not sure I would use it on her, though, because she has such hard herxes, anyway. Maybe if I saw her start to plateau - her status right now is a long story. Currently I am on Bicillin shots, and pulsing Tindimax 2 weeks on/ 2 weeks off- Tindamax being a 'cyst buster'. (Stopped Bolouke.) I'll tell you, cyst busters and biofilm breakups seem like the same thing to me, in a way (although Tindamax being a much harder hit for me- very powerful) as I feel like the cyst busters are breaking up gunk (goops? globs?) of God awful debris- I get what feels like viral flairs, and it feels like old pent up toxins/disease being released. Isn't that lovely? Have I scared you? I hope not, because for me, I feel like working on these has /is been a turning point. Detox like crazy, keep bowels moving. If I go back on oral antibiotics only later this year to clean up some more Bartonella (not sure where I'm at on that- have worked on it, but don't know if it is still there) I will definitely go back to the Bolouke with those orals for Bartonella- after getting over initial starting herxes I may have.

I had a positive blood PCR test through Igenex, and high positive Bartonella through Igenex- but my dd did not get something that said 'positive' from Igenex, just the Lyme only bacteria bands all lit up, and symptoms. I hit a very rough patch with her with Lyme treatment, and seemed to have stumped the world with this child. She has been off antibiotics for a little while now, treating with naturals, and I'm tempted to have her do this Advanced Lyme test- and if it comes back with a spirochete picture, hang it up on the fridge to keep me going with her.

If you have a child with 2 of the same (my dd does- double A1298c) then that means DH and I both carry a copy of this- the child gets one from each biological parent.

I'm sorry you are at this point :-( Just wanted to add my first time recent experience doing a cyst buster (were you guys ever on them before, with your LLMD?) I'm pulsing Tindamax, decent higher doses, on/off for longer stretches on, and it's been a bit astounding to me: I see, and feel, gobs of junk/disease/ a host of either parasites, Lyme, I don't know what, and I have been feeling some viral flairs while 'on', too. I am also on Bicillin shots 2x a week, hoping that is mopping up/killing what's being released. When I feel the viral flairs, I take L-Lysine. If you've never been on cyst busters, maybe you are releasing all this - Just a thought, sorry if gross. SF Mom had great advice, too----

We had our IVIG's at a local Coram Center- speciality chains that do IV's- look in your area, may be one close by. I was impressed- pharmacy on site, RN's that do IVIG's all day long- our treating Dr. at the time called them, and faxed the prescription for IVIG over, exactly how he wanted it done. You are assigned a nurse, special chair, DVD player, etc. They walked me through the whole thing, and answered all my repetitive and double checking them questions. 20 minutes away from us- dd got to sleep in her own bed at home, no travel costs, and I thought there price was very good when I compared. Key is your treating PANS Dr. writing your script to get it done.

So do both of these naturals only come in drops? Do they have a taste? I'm afraid my kids won't take it if they can taste it. They will swallow horse pills, so long as they don't have to taste the medicine. ** Yes, they are only drops/tinctures, cannot be mixed with juice or 'hidden'. The drops with a little water shot down the throat with an oral syringe has worked for me- and a low sugar sip of a juice box given right after (she doesn't get juice boxes otherwise) No, they don't taste good. And maybe I get away with it like this would be because I've done liquid supps (and powdered probiotics) like this for years, but danced a jig when she finally got down swallowing caps 3 years ago.

I did find Byron White strong- although I was using it at the beginning of treatment, I did herx, and never moved up to more than 12 drops 2x a day- For dd, I would take 1/2 oral syringe of water, put in a cup, add the drops, suck it all back up, squirt in her mouth with syringe, and give a drink after for her to chase. Not to sound dramatic, but the very first Lyme thing I ever took (before antibiotics) was 2 drops of Beyond Balance Bar-1. Literally, within seconds, I had stabbing behind one eye, and shooting pains down my leg. That one has cats claw, always wondered if that was it. Also, on dd's recent antibiotic break, I found OLE to be very good- that could have been working on viruses. But I have heard OLE taken with antibiotics makes the antibx less effective. So yes, I found those tinctures to be potent. As for Cowden, I have only used the Burber and Parsley, 10 drops of each together, used for herxing. Seems to help.

Thank you for printing this article. I liked how it was written- compact, with some humor, but drove the main points home. I copied it from your post, and emailed it out to my family (in different states.) My brother, who has raging tinnitus, been to many neurologists, etc., very much suffers, and a year ago landed in the hospital with 'unknown' stomach infections, stayed the night, IV antibiotics- He is an executive at IBM, keeps much to himself about it all- I asked him if he'd been tested for Lyme, he said yes, I asked if it was the Elisa, he said he would look, never brought it up again. But when I sent him this emailed article, he immediately emailed back about testing. I have no idea if he has Lyme (but spent years fly fishing in the mountains) but I would love for him to rule it out. So, thank you.