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)?

We've been seeing Dr. C in MO for our now 20yo ds with Tourettes & an unmistakably positive Igenex for Lyme. It seems very probable that he also has bartonella. Meanwhile, my dd17 has had red streaks on her skin - chest & legs - for quite some time (years), but with our money being tight, we figured we would treat her after we found something to help our oldest because he is really messed up. In recent months, though, she began having intense itching after showering. I've been giving her an antihistamine after she showered, but it started getting worse, & now I give it to her before she showers. I am concerned that her condition is getting worse & not going to wait till we find the answers via her oldest brother. Dr. C says that based on our history, it seems a good possibility that I passed it on to my kids in the womb so I am thinking dd is infected with the same bugs as ds (except they got in ds's neurological system, but apparently not in dd's) and therefore would need the same treatment? Unfortunately, we have not been having anything but very modest success with the antibiotics tried thus far. Last one was Claforan IM - which set off son's itching, but erupted into a full blown allergic reaction so we had to stop. Ironically, it seems to have helped him the most. Now he's trying rifampin (only been on it a week). So while we're trying to figure this out for my son, how can I help my daughter? I'm thinking of using his leftovers on her. So if hers is not neurological, is it reasonable to think that the usual bartonella antibiotics will help her even though they did not help her brother?

Can anyone tell me of a good Lyme forum for adults & any helpful sites that I can share with a mom who has been thru some really rough health issues that I think might be at least partly due to Lyme (because she felt better while on doxycycline, & her dr was actually kind enough to give her multiple courses, so that now she is doing better though still not functioning well enough to work)? She has a lot of questions, including whether testing would be helpful at this point or not, that I am not at all well-equipped to answer as I am still wrestling with these things myself! I'd love to refer her to a place with helpful, experienced people so she can figure out if this is worth the $ to pursue.

How frustrating! Sometimes I have more vivid dreams than usual from the melatonin - usually when I'm sleep deprived - but I've never experienced that. Have you had your cortisol and neurotransmitter levels checked? That should be covered by regular insurance. The adrenal cortex supplement sounds like a wise move!

I have adrenal fatigue and have found time released melatonin to be pretty helpful - have you tried it or just your dd?

I am puzzled that you cannot see why your comment - this sentence in particular - has left people feeling offended and defensive. Perhaps if you switched around your use of mainstream & alternative med references you might be able to see this from the eyes of others - esp since most of us (a) don't know you and ( b ) have no clue why you would expect us to forego our own judgment and embrace yours instead? Given the attitude expressed above, I find this even more puzzling. You just finished talking about the mainstream approach as inadequate and touting the alternatives as THE CURE for those with the wit to recognize it as such - and now you say that you prefer both? Why aren't you just going for THE CURE? I am hoping that all this is a misunderstanding and you are just having difficulty expressing what you actually mean...

Still interested in RTMS, but it is on the back burner for now. I still want to look into it if the Lyme treatment doesn't help DS19, but figure since we know without a doubt at this point that he has borrelia, in addition to the several other possible infections, just addressing the tics would be a bad idea. Definitely want to go after the bugs before they cause any more damage!

We got some of our test results on DS19 from our visit to Dr. C in Missouri a couple of weeks ago. His cortisol is pretty low & the Dr wants him to take hydrocortisone pills. Now that has me a little nervous because I have been hearing for so long that you should avoid steroids with Lyme, and also if you suffer from tics. We had some allergy testing done while we were there & they got him started with allergy drops that ended up increasing his tics pretty significantly. They said to stop the drops, which they are going to dilute further, and not to resume until his body has returned to the previous baseline. BUT, as always happens when his allergies increase, we got sick with some kind of bug. DS19's tics are still showing no sign of returning to where they were. I'm going to have to call the office tomorrow to find out what we should do, but I would love to have some feedback about the whole cortisol/hydrocortisone issue. I'm extremely nervous right now about doing anything to make him tic worse as we are now approaching the severe level we were at last year before we started treating him.

Thanks - that is so encouraging! Which state are you going there from? We finally got some rain here at the end of last week which was wonderful (major drought in TX), but the ragweed pollen count has been climbing since & hit another high today & my DS19 is really struggling. We've tried antihistamines with no noticeable benefit so it would be awesome if SLIT worked for us. I'll go ahead & ask them if it's region specific tomorrow. (We could have gotten in a week earlier if we could do a 6:30am appt, but my DS would never be able to make it. The earlier he gets up, the worse his tics mess him up. We have a 1pm appt instead)

Yay! We're almost to our appointment! (Oct 11th) I just got a call from Dr. C's office in Missouri this AM asking if we want to do allergy testing after our appt with the dr. We DEFINITELY have allergy issues. In fact, it may well be that Ragweed is the cause of DS19's big exacerbation that began last month - it has definitely been a major contributor to his problems. Anyway, I seem to recall reading that allergy testing is best done closer to home because the allergens tested can be regionally specific. Since the Houston region most likely has different allergens than Columbia, MO, would it be better to spend our money on allergy testing here? Will the PANS/Lyme issues complicate that? What do y'all think? ~Grace

DS19's visit to Missouri LLMD is Oct 11th. We are trying to hang on and just do what we can till then. I am puzzled at this point. DS was solidly positive for Lyme, but no co-infections with Igenex testing. I realize that's not definitive though. We have had our most striking positives with the herb Lomatium. Stomach got upset with Augmentin & then later doxycycline and with his issues, there was no way we could try to stay on it to see if his system would adjust. Zithromax has helped some, and it is noticeable when he goes off of it, but maybe only about 5 to 10% improvement. Dr. tried adding clindamycin - saw no effect one way or the other. We tried Cat's Claw for a month - no effect. Now we've been on Flagyl for 2 weeks - no effect. In the midst of the Flagyl trial, we had ragweed season start and we've had the smoke particulates from the various wildfires around Houston in the air & we are seeing a repeat of his very bad symptoms that showed up at about this same time last year (though thanks God they are not quite as severe). Clearly, his body is dealing with more than Lyme, but I am wondering if Lyme is just sort of like background noise for his system, and we still haven't hit upon the main culprit. We are still trying to clean up our house from the mold that we found under the kitchen sink back in June so it is possible that the main culprit is mold allergy. I was making some headway, but with school having started, things are backsliding in the kitchen & bathrooms. Wish we could afford someone to come in & clean from top to bottom. Haven't pulled out the mold affected cabinet boards yet - afraid of making things worse by exposing what's behind them when we don't have the resources to do anything with it - but I keep spraying it down with bleach regularly (about every other day). I'm thinking of pouring enough bleach to soak the areas under & behind the cabinet, but I am worried about the fumes (we're still having 100+ degree days here - opening the windows long enough to air it out is not really an option) DH says we will have to wait till our tax return to afford anything professionally done. I'm praying that we're not wasting our money going to the LLMD when we haven't tackled this yet, but if we use our money to clean up the mold, we won't have it for the LLMD visit - and vice versa. Still, I would've thought we'd have seen more improvement than what we're seeing by reducing the number of things his immune system is having to deal with. Opinions or advice about any part of this situation?