norcalmom

no kidding. some cover it, some deny it. I'd even argue that many are being denied while some that apeal and appeal who may have a different doctor - and are using the same codes - are getting approved. I think its discrimination. My case is a perfect example. My DS got IVIG (and we were told that he didn't require prior approval for that procedure) it was approved. fast forward 18 months. We were going to do another one. Same exact doctor, DX paper work - everything - except the admin office said that our insurance actually reads "pre-certification recommended" - this was not caught by last admin person. We thought that it would be a slam dunk - since they already approved it once - and they denied it! I'm gearing up my energy to make an appeal. This would be DS's 3rd IVIG. The first we paid out of pocket (different insurance) - and I appealed and it was a waste of my time. They make it so hard and time consuming. Anyone have a "case manager" that has handled the appeals for them? What if we all got and found a person that could be a pandas "insurance expert" to make appeals for us? It certainly looks like if you know how to work the system and try hard enough you can get approval. Its like they count on you not appealing. Certain the nurse - who is just a general nurse - does not know more than my MD, PhD, Stanford pediatric immunologist that is asking for the procedure. It hasn't been "proven" according to the denial. Which is funny - since DS had one, and it worked for him last time (and you paid for it last time). You don't get more specific proof than that!

I think the original study that was done, the one that is reference most, is the on on trichotillomania (hair pulling). I did a quick search and found a journal article about it - completed in 2009. Here is a quote on the dosage: _______________________________ Investigators performed a double-blind, placebo-controlled study of NAC treatment for trichotillomania. Fifty patients, aged 18 to 65, with a primary diagnosis of trichotillomania were randomized to receive 1200 mg NAC or placebo every day for 6 weeks. At week 6, if trichotillomania persisted, the dose was increased to 2400 mg/day or a matching increase in placebo pills; 88% of the placebo group and 72% of the treatment group received the dose increase. Patients were evaluated every 3 weeks for 12 weeks; 88% of both groups completed the study. here is whole article: http://dermatology.jwatch.org/cgi/content/full/2009/1113/3

Check out garth nicholson's work on chronic mycoplasma. Kids under 8 might not be able to take the Doxycycline...thats what I've heard. Stains their teeth..All his research is on adults. He also beleives in the multiple infection theory... http://www.immed.org/index.htm

Be prepared - its long - 163 minutes. Its good though! (I'm about 30 minutes in, doing some email and research while listening)

"episondic course" is a hallmark of pandas/Pitand. Usually lasts longer than a week though - for many of us we would see a quick ramp up starting with a cold (sometimes you will see a couple of the symptoms before the cold - this happens because their immune system is trying to fight the cold, and may be holding it off - but is sending out the "bad antibodies" along with the appropriate ones) then for 1-2 weeks things get worse, then 1-2 weeks really bad - and then 1-2 weeks back to "baseline" (or a new "baseline that isn't as good as the last baseline) in which case the "baseline" is creeping up. When we saw baseline creeping up, and realized that not only was he eacerbating for 3-6 weeks with each illness, but he was not going back to normal - that's when we decided to get IVIG. For us - when DS would have insomnia or wet his bed - it meant that within a day or two he would get a cold, and head down hill from there (even if cold lasted only a few days). This happened about 90% of the time. Dental "flairs" also occur - when there are teeth falling out or molars coming in. There is alot of bacteria in your mouth, and the immune system seens to go on alert when this happens. For us a dental flair was usually less than a couple weeks - usually less than a week even. Antibitoics may shorten the course of exacerbation and maybe the severity, but for most of us is not a "cure" This pattern went on for us even though DS was on high does Azithromycin. The Azith shortened and lessened the exacerbations, but didn't stop them. Which labs were positive for hand foot mouth (cosackies) Was his IgM positive?? or only the IgG number? I'm curious...we just had my son tested. 80% or more of population has had it and shouldhave a posstiive IgG. (wondering if Dr T sees a really high possive IgG as possible active infection, or only if IgM is positive?) do you mind sharing your son's test results?

yes - I was there and do recall her saying that mycoP and strep are related (very similar molecular make-up). I would get a mycoP titer taken (IgG and IgM) - if IgM is positive - there is no question, its active and recent. If IgM is neg, then you have a baseline and can see if going up or down (it can still be active - but is more like to be old infection coming to surface or hes had it before and no longer makes the IgM). He could have chronic myco - which basically has NO symptoms. Thats what we discovered my son had/has. Doxy has been best antibiotic, and there are hebals like A-Myco that we also used. My son has had periods of the very long dry cough in the past...when this all started. he had a couple coughs, not fever or anything - dsounded almost croupy - but he wasn't coughing all the time, maybe once per hours?) but lasted for about 4 weeks. I took him in both times -lungs were clear, and I was told " a long lasting virus" or that he got two things back to back.... I'd Get the titers and esstablish a baseline so you don't have to guess! It takes a long time to get rid of if its "chronic". Good luck.

I think CVID may also be at a different dosage - so they may be able to deny the HD IVIG - since the treatment for CVID is lower dose.

Some more interesting stuff on Klinghardt's website - the videos are the ones labeled "fundamental teachings" sequential 1-5, about 45 minutes to watch them all. He even shows the "sanctuary" which looks like a mosquito net that you drape over the bed when you sleep and he runs the EMF Microwave meter inside and outside to show the difference. There are paints, plastic films, fabrics and all manner of materials that can block different transmissions. (the videos just sho this one net, but my own research turned up the other stuff) http://www.klinghardtacademy.com/Videos/ There are companies that come to your home to measure the exposure you have in different areas. They also rent the meters. Since there is a company not to far from my area, I'm going to have an engineer expert come and take the measurements (there are about 3 different measurements and meters) and talk to us about it. Hubby is in high tech (smart phones mostly) and is office abuts DS's bedroom. It houses a lot of wireless stuff and looks like space aliens are landing if you go in there at night. DH is not a "believer" thinks I'm a bit crazy actually (hey - it not bothering him therefore it must not be something that exists - esp. since all of his world thinks its acceptable!)- but he'll let me do what I want. Maybe "Electro Smog" will be something, maybe not. I dunno what the future will hold, but if there is a low impact thing that I can do that will protect my kid from something that could be causing issues because he has sensitive immune issues - I'm open to it. We recently did the KPU testing that he talks about, and I'm interested to find out the results of that...might be another week or so.

Will they be drawing blood every 2 weeks??? Do you know what tests they will be running?

are there tests and are they reliable for some of the supplements that are given to address methylation? I have to focus on what it mostly likely to work, and would prefer to test rather than just giving them a try. Since this is a balancing act, I'm assuming that they can be over or under on these and either way can cause problems in the chain. Is B-12 test acutrate in kids? i know alot of the vitamins will fluctuate greatly from day to day, hour to hour. Trying to figure out what tests and supplements to speak with LLMD about on next visit. Thanks!

yes - you can have myco Pwithout typical mycoP symptoms. Chronic mycoplasma is different from typical mycoplasma. What you need to look at are her IgG numbers. I'm assuming there is no longer any IgM - that indicates active recently acquired infection. Over time the IgM goes down. The IgG can stay high for long periods of time. It means you had the infection at some point. But - if it went up - or is still really high and didn't go down at all - then she may still have an active MycoP infection. (if it went up a bunch is definately has it) What were her numbers? Did she take Doxycycline for it? Doxy and mino are the preferred antibiotics. My son's IgG went up over 500 points while on full does Azithromycin (this is how we knew for sure he had Myco P - because he had no symptoms, and his IgM was negative). He was on the Azith for pandas...then we swtiched to Doxy for several months. We're still dealing with stuff. but the antibitoc switch helped and his titer went down somewhat (over a 5 month period, with about 14 weeks on Doxy, and 2 weeks on mini) also on an herb called A-myco.

http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx Don't know if this has been posted before - enjoy! ps - there are several other related papers and interviews in bottom right on Lyme -

I can't tell you the number of strep tests I've had, and my DShas had - never to have a positive culture. The past years DS's immune system seemed a lot stronger. He's had pandas (pitand actually) for 3 years - and has had 2 IVIGs. During the past year I attribute the improvement in not getting sick in the first place to switching to Doxycycline for a chronic mycoplasma infection that we uncovered while researching possibility of Lyme. Also to giving Vit D3 and fish oil...I was fairly religous about the Vit D3 for most of last winter, not as much on the fish oil. Also, at ANY sign of anything in a family member I would give sambucus and load up on Vit C via juice, smoothies and or supplements. Seemed to help a lot. DS was low on Vit D3 - at 25, same as me, so I just started to put the drops on everyones cereal in the morning before I pour the milk on. DS is also a little older, so its easier as at 13 you have less of the running around with a a runny nose thing going on in the school yard. She had original reaction in Spring due to a strep infection? Have you thought of participating in the IVIG study through the NIMH? IVIG can be scary, but if she is reacting to everything now, and has not returned to normal with antibiotics (do you have long term prescription?) I would defiantly consider it. Also, Dr Tanya Murphy in FL is doing an antibiotic study. Another option. Are you working with a pandas specialist? Best-

Hope the mice don't meet a nice lady named Mady Hornig in it.... Good luck ! Sounds great for the the littler pandas kids.

Thnak you LLM! I replied on the pandas board, where you also shared this. But wanted to also note something I read last night in Singetons "The Lyme Disease Cure" that NK cells NEED glutithione. I know alot of Lyme docs have this measured as part of an initial work up. If your child's NK cells or CD57 is low - or close to low - you may want to try to enhance glutithione and or investigate mutations that may be hindering glutithione.

Thanks for that word of warning ShaesMom. Not everything is a herx, and I've also been reading that an extreme herx can kill you, and cause other problems So either way we will be switching to something else.

LLM, Speaking as the Dummy that asked for it -Thank you!! It was very generous of you to post the diagram and explain it. I was reading Singleton's "The Lyme Disease Solution" last night and he mentioned something that I could get my head around regarding this - and motivate me enough to care enough to invest the time to really read your diagram and try to understand it. If you aren't Lyme - don't dismiss this. It has to do with chronic infection of any kind. Natural Killer Cells (a key component of the immune system) need glutithione to function. They cannot perform without it. Without high levels of NK cells, your immune system is disabled, and leads to inability to fully clear infections. There are things that lead to less glutithione production (see LLMs comments on MTHFR mutations) and things that enhance it. So in addition to helping with clearing toxins, and regulate seratonin, proper functioning mythylation helps the bodies immune system kill off infection (because good amounts of glutithione = better production of NK cells = better ability to clear infection). So for those of you (like me maybe?) that are trying to figure out if they should care about detox or mutations, if our kids have recurring or chronic infections, maybe we should care. So, I may still be a Dummy, but things are starting to click. Thanks for beating the drum LLM. Its starting to get through my thick skull! PS - singleton states that acetminophin is horrible for glutithione. (along with alcohol and smoking..I assume our kids aren't doing that) . Since many of us use anti-inflatories, I thought I'd just mention that you may want to use something other than Tylenol if you have the option.

He had mild headache all day yesterday, and even this morning. Sort of interestingly - he wet his bed last night, and has had a couple very minor head tics. He had this after IVIG too. Hasn't done that in months. It was always the first thing that would happen with an exacerbation, and he did it for 2 weeks or so following both of his IVIGs (ahtough all other pandas symptoms improved dramatically ) weird. Thanks for all the advice. My sister is unable to take Septra. Weird thing is DS took it for 2 week (first week was fine, second week a couple mild headaches and diarrhea) had about a week off due to diarrhea - then we gave him ONE does and BOOM - massive reaction within hours. We did some mercury testing years ago - he was neg. This was prior to pandas DX. Will ask LLMD about methylation - I've not started to research that. I see all the posts on it, and haven't had the energy to begin to try to understand it. Do think we need to look at it. I need "methylation for dummies" book or website if anyone has a recommendation! I was going to do IVIG last week - and insurance denied pre-certifiaction. I'm actually kinda happy that happened because it gave me longer to see how he reacted to the septa, and that fact that his mood is better and "streaks" seem to have faded. So, enough evidence that antibiotic to target bartonella may be a game changer for DX. Wish us luck...

Thanks Nancy D for all the suggestions. It was a really bad night, I slept on his floor. He stayed at over 101.5 temp despite Advil every 4 hours. He felt nauseous and more like a migraine than a headache - the Advil didn't touch that either. Fever broke today at around noon. he only had ONE pill - dose is two per day! He obviously can't function on that. Because of the high fever, and the warning I found this morning when looking up Septra that fever is not a mild side effect, but a "stop this med immediately" side effect for Septra, I'm going to have to stop it. I'm hopeful of course is was a major herx and killed off alot of the buggers! Seems like if it was it spurred his immune system into action with that high fever. Perhaps A-bart or azith-rifampin will be better for him, and the septra gave him a jump start. Unfortunately its Sat and LLMD not open weekend.

Our doc perscribed up to 2 tablets per day (different med) and told us to start with a does of ONE QUARTER of a tablet for 10 days - 2 weeks. If it helps, keep at that does. More is not better. If it does nothing, increase to a half of a pill.. stay at that for 2 weeks, and then to 3/4 for a week or so and if that does nothing, go up to a whole one (which is still only half of a does). Thats just to give you an idea of HOW low and slow. DS is at one pill per day. Not sure it does anything for him. but with other stuff and different antibitoics and supplements we are trying, along with the very slow rate of increase its really hard to tell if it is helping any. And I don't want it to mask any true gains or losses he's having with antibiotics or supplements.

After taking Septa for 2 weeks DS had some diarrhea - and we took him off it bcs it was to bad. He also had some headaches and fatigue during that time (the second week of it, not the first) , but he was at camp the second week thats when diarrhea and headaches started - and I freaked and told the camp administratorsto stop giving him the the Septra - After camp - his mood improved, and his stretch mark rash faded during that 2 weeks - a lot. So we are thinking Bartonella, even though he tests negative. He's had pandas DX possible Lyme - confirmed mycoP which has been treated for 6 mos. He was on Septra for 2 weeks, off for 1 week. I called LLMD and they said to start him back up, but double the probiotics for the diarrhea. So today I started him back up. Within 2 hours his temperature went to 101 + and he had a bad headache (this is with Advil). I'm thinking (hoping actually!) this is herx. He only had ONE dose. And he knows this is why he is feeling bad and is upstairs swearing that he will never take this medicine again as I write this. Any thoughts or advice welcome! I'm actually happy - it looks and feels like a real herx, but getting him to take that pill tomorrow after this reaction to it tonight will not be easy. Any others have experience with BART herx like this???

This is a brillant idea. I've not seen it, but I'd be willing to buy it for my son if anyone here has given it a review - Although a butterfly may probably not "fly" with 13 year old boy...

Hi Smarty- - yes - that is my concern - to pursue Bart treatment or not. But I think it is more likely BART now because it did fade so quickly. Stretch marks take forever to go away, and usually fade to silvery marks after years. HIs are just going away - no silvery nothing, and within a couple weeks. He has not had the marks for long either. At most 4 months (don't know exactly, don't see him with out shirt too much, he's 13, and you have to kind of look for them. We have confirmed mycoplasma, and test negative for bart, but of course with Lyme the psych symptoms always make them think Bart (or nuero-lyme) . Garth Nicholson thinks we should just keep pursuing Myco treatment (which helped a lot (high does Doxy for several months) - doesn't exacerbated as much or as easily anymore). but since DS's OCD symptom (misophonia) has actually gotten worse, I was debating another IVIG for pandas (which was tremendously helpful the first two times). The rash looks exactly like stretch marks..even the LLMD said you can't really tell when its on that part of the body. I put in call to them yesterday. they said to go back on the Septra and to double probiotics. He also said he felt tiered and had some headaches during week 2 on the spetra (same time that diarrhea kicked in). ..but I had swithced probiotics to something room temp stable for camp (cuturelle)...so that could be factor in diarrhea as well. He was at camp when that happened, and since I couldn't be there to see how bad it was - I pulled told them to stop the Septra. Also, during that time I was visiting with my sister who had reaction years ago to Bactrim - was in ICU for 4 day - body stopped making white blood cells. She is allergic to penicillin so doc had given her Bactrim for a sinus (or ear?) infection. Nearly died....she told me this story and I freaked out when I heard he told me he was having issues at camp - pulled him off it. But his mood (related to his OCD thing) is much better and the marks faded...and now that he's home I'm willing to put him back on it. Next question is - how to treat at same time as the mycoplasma....that will be our next appointment.

I just took some photos of the rash and put them side by side with the photos I took 3-4 weeks ago. They are definately faded. No doubt. About half as many streaks and less intensity. I don't think strech marks can fade that fast - but I'm not sure. He did loose a little weight on the Septra - it reduced his appetite.

Im not sure they are bartonella marks - and neither is our LLMD who looked at them. They are on the "love handle" area - a common site for strech marks, and he's growing, and tends to plump up a bit and then shoot up, so they could be either. They showed up in the past 2 months or so. He would be gestational Lyme - pandas, so the marks don't correlate with any tic bite. He has pandas and mycoplasma for sure, and I test CDC positive for having had Lyme (but no symptoms). DS was on Doxy then mino for mycoP prior to the rash showing up. And it looks like his mycoplasma titers have stopped rising (after 5 months on those antibitotics - he had been on high does azith for 2 years for the pandas prior to that and they mycoP titer went up 500 points while he was on those! ) Doc put him on Septra for possible bartonella (becasue I asked for something bartonella related) - and he did 2 weeks of it but couldn't tolerate it, so he is off it and all antibiotics at the moment. But, I do think the marks faded a little - but that could be my imagination! And since you all are telling me it takes months for them to fade - most likely is my wishful thinking that it could work that fast. Although as I write this, I'm realizing that he was on the azith for 2 years for pandas, and maybe that kept a little lid on the bartonella, and once he switched to Doxy, the bart was able to become more active. I asked for Septra (which is same as Bactrim) instead of the axith/rifampin combo they usually use because DS was on the azith for so long, I felt it wasn't going to do anything....