GraceUnderPressure

One of my kids was texture aversive on top of gagging on anything vegetable-green. It took me years of being firm & rewarding even tiny steps forward so that he now, at age 10, asks for seconds on green beans & is up to a serving spoon of broccoli or spinach (his most difficult veggies). It won't happen overnight & you will frequently feel like it is never going to happen, but persevere! It is very hard when they are too little to understand - thankfully my dh had bought a dvd of old Popeye shorts that my kids enjoyed watching which helped me convey to them that spinach helps make our bodies stronger which decreased their resistance. I let my ds start with ridiculously small amounts so that he felt some control over the process. With the little ones, hiding pureed veggies in their food might be the best way to get those nutrients in there. We started with finding healthier versions of their favorite foods. It wasn't much of an improvement, but it was still an improvement & got us started. Another tactic that worked well for us was mixing just a little bit of the healthy stuff in with the old food, & gradually increasing the amount of the healthy food while decreasing the amount of the old stuff, until we were used to the taste and didn't mind it anymore. I remember being totally overwhelmed when our nutritionist was explaining the foods we needed to eliminate & was so grateful when he told me it was okay to start by decreasing the amounts and just try to keep working my way toward that eventual goal. We needed that time for both our bodies & our minds to adapt! The essential point is - don't worry about the size of your steps or even how long it takes to do it, just keep working towards taking them!

I so totally second what you're saying - thank you for saying it better than I ever could! The wonderful people who take the time to post their questions, research, experiences and answers truly have saved our lives from the dark hole we were in 3 years ago. We are still struggling and still have a long way to go, but just the fact that we are crawling forward instead of spiraling down - the fact that we have hope where we were once sinking into the pit of despair - is HUGE! My most heartfelt thanks to you all as well! I pray for God to bless all the folks on this board and that He will grant us a cure for these awful infections and the autoimmunity they cause!

Beeskneesmommy, I tried to pm you, but your box must be full because it would not send. ~Grace

Our Colorado dr started my ds (with Tourette's from Lyme, bart & who knows what else) on Apo-Hepat, Para-A, Omnicef, nystatin, Artemisinin, mimosa pudica, Viragraphis, Engystol & taurine. DS has had Omnicef, nystatin & taurine before with no noticeable issues. I accidentally gave him Samento because I mixed his list up with his sister's. He had 1 drop twice a day 1st day, 2 drops the 2nd day & I realized my mistake after giving him 3 drops this morning. I know Cat's Claw is supposed to be potent, but he has taken it in the capsule form with no noticeable affects. Not sure if the tincture form makes a difference though. So ds's tics have been escalating & today it has gotten pretty rough for him. I am inclined to suspect the Viragraphis as he has always had high viral titers. Trying to decide how to handle this till I can talk to the dr's office Monday. Thinking of stopping the Viragraphis till then. Opinions, please? ~Grace

Thank you all! We had a nice smooth, uneventful trip! So sorry for all those in Colorado suffering from flooding right now - prayers going out to you all!

Hey dear life-saving friends! I haven't had time to post recently as things have been so crazy (in fact, it is 5 am over here & I am still trying to get everything packed as my ds was ticcing so bad that he couldn't get upstairs to bed & needed me to stay in my room because I was somehow messing him up - ugh) We are leaving out for our first visit to our new LLMD in Colorado and just wanted to ask for prayers for a safe trip and especially a successful, healing trip! (This time we'll be taking our dd with the bartonella symptoms as well as our ds) I'll probably be back on here by the end of the week to ask tons of new questions, lol! Thanks all! ~Grace

Thanks, JoyBop - so did your LLMD just do the muscle testing or did he also use the biofeedback machines? Did he claim to be able to manipulate energy with his own energy or anything along those lines? Frankly, I'm not bothered by it even if it should turn out that it's just quackery if the LLMD I'm looking at can still help my son despite it. My concern is that upon researching it, I find that some of the people out there using this stuff are tinkering with things that go against my family's religious beliefs & that's the line we cannot cross for any reason - not even for the possibility of healing.

(My intention here is simply to get more information so as to make an informed decision in my son's treatment - not looking to start an argument. Anyone who prefers to pm me, I understand & welcome any info you would like to share.) We have made an appt for our son to see an LLMD who uses ART in his practice. We are open to the possibility of people having electro-magnetic fields and the manipulation of those being able to affect our health. However, we are concerned about whether there is any attempt to mentally or spiritually manipulate anything as we are NOT open to that. I have read about the process for muscle testing - I'm not sure if ART differs significantly (it does not sound like it). Can anyone here share with me if this is similar to Klinghardt's method with biofeedback machines & the like or some of the specifics of how it is employed? Thanks! ~Grace

My son's predominant problem seems to stem from bartonella though we did not know that at the time we tried IVIG. The first time we had almost a week of more than 50% improvement of his tics, but it faded quickly & our 2nd IVIG did nothing.

We did it as part of the study as well. Our biggest reason was because our son had no history with strep, excepting a possible case when he was 6, but his case was similar to the PANDAS kids I read about on here. It confirmed for us that he was a PANS kid & that it was indeed worth our time & $ to initiate this medical journey. Shortly thereafter, we discovered he was positive for Lyme (after almost blowing off the test to save money because we were considered such a low risk for it - even our PANDAS doc was surprised). It has pretty much saved our son's life, but if he had a known history with strep as you say your son does, I seriously doubt we would have bothered spending the money as that would virtually eliminate the uncertainty our family was dealing with when we first learned about PANS.

I have several electrical engineers on my side of the family & dh has at least two civil engineers. DH & I are both pharmacists (strong math & science). I also read that "engineer brains" (but it actually seems to be more like "geek brains", lol!) appear to have more glutamate receptors & they believe that has to do with the higher vulnerability to certain conditions like those on the autistic spectrum. Interesting that my oldest son with lyme & bart triggered Tourette's has his grandfather's gift for math (though frustratingly, the tics make him more prone to careless errors in basic operation problems). Still "geek brains" are more likely to get on the internet & start researching so we are probably a self-selected group. It would be interesting to see some official research done on this!

We are considering seeing Dr. N in Denver, but we are in Houston, TX and his receptionist says that he normally likes to do followups every 2 months. We've been struggling (mostly financially but also timewise) to manage the LLMD we're seeing in Missouri every 6 mos so that would pose quite a hardship! Just wondering if anyone else who is seeing him can tell me how flexible he is on followup appointments. I know he does phone consults but I'm not sure how often he would allow that in the place of a followup or how long those typically run (i.e. can we afford it? if it's 15 minutes no problem, but longer?). Thanks for any & all feedback! ~Grace

He does not have a negative reaction (well, actually I don't even know one way or the other) - his tics (compulsive triggers, but not obsessive) pretty much prevent him from getting into the tub. I went kind of nuts at the Vitamin Shoppe today & bought NAC, resveratrol (has knotweed AND wine-grape derived, couldn't find just knotweed - is that bad?), Solaray's Liver Blend (a milk thistle combo), reduced glutathione, and r-ALA. DS said this evening that his tics have been a weird sort of up & down all afternoon so now I am wondering if I should have just added them one at a time.

Thanks all! I am very relieved to hear that this decline is not likely to be the end of our story! The success stories thread was really encouraging! My son had some improvement with rifampin, but could not stay on it for long because it was making his tics worse. Sounds like that should have been our sign that he wasn't ready to do tindamax yet? I am trying to search thru old posts for info but there are so many & I have so little time right now - what should I do to help my son detox? After reading someone else's post, I started him on ibuprofen today & am going to get him some resveratrol & alpha lipoic acid tomorrow. How do I help increase his glutathione - NAC? His condition makes epsom salts baths impossible. (We've been eating pretty crappy lately which no doubt hasn't helped a bit so I've got to find time to start fixing real food all the time, too :-P). What else can I do to help him? Opinions - should I keep with the abx that have been mildly effective or should I be pulsing or what? (Our LLMD generally does just one antibiotic at a time and to my knowledge does not pulse or cycle them, but he is also very supportive of allowing us to try out things so we have flexibility in what we can do)

My 21yo son has neuro lyme along with some form of bartonella, (probably also babesia) that has caused him to have Tourette's. We've been seeing Dr. C in Missouri for ~1&1/2 yrs now. We originally started with symptoms of brain fog & tics. The treatments thus far have eliminated the brain fog & up until recently had decreased his tics by maybe 15 - 20%. Unfortunately, we started him on tindamax/ tinidazole a few months back & didn't notice anything for the first couple of weeks. Then his tics started to get worse but it was so slowly that it took us a while to pick up on it (he was also prepping to test for his black belt in taekwondo so he was a little stressed & working harder than usual which also made it harder to spot). So he was on it for about a month before we took him off. I figured he was having a herx so I decided to go back on some antibiotics that he had used previously that had been vaguely positive in their effect but relatively mild in their herx reaction (didn't want to add to the herx, but didn't want to give the bart a chance to bounce back either). He does not seem to be clearing the herx (if it is one) as he is not getting better & actually seems like he might be getting worse. I tried adding chlorella, but didn't help & seemed like it might be making things worse. I'm trying not to panic, but it is killing me to have fought so hard for such a little bit of ground & now be losing even that. Anyone out there dealing with neuro lyme & bart that got worse with tindamax and managed to turn things back around? What should I try (that hopefully won't make things any worse)?