LNN

Diflucan is used for systemic yeast infections throughout the body. Nystatin is the most common drug used to treat yeast infections that are restricted to the GI Tract. I've not heard of anyone using amphotericin, probably because of the potentially serious side effects. My understanding is that if given via IV, it's used for systemic (throughout the body) fungal infections. But my guess is the need for IV administration (and the dangers of toxicity) reduces how many people go this route. It seems to be available in an oral formula as well but perhaps not as effective, based on what I can gather from wikipedia. If you are needing something to treat a body-wide fungal infection, I'd ask your doctor about diflucan as it seems to be far better tolerated and have less risks/side effects.

Tu4four - I liken the pain to child birth without an epidural. During the event, you can't imagine how you're ever going to get thru it. You scream, cry, swear, beg to be put out of your misery. But the only way to the other side is thru the pain. When it's behind you, you wouldn't dare tell someone who's pregnant "oh, it's not so bad." You don't lie. You say "yes, it really, really sucks." But you also add, "the prize you get at the end is soooooo worth it."

When I started adding a sublingual methylB12, my DD didn't want to stick it under her tongue the way you're supposed to. So I used to dissolve it in a little water and let her drink it. Tests showed it wasn't doing squat. B12 is notorious for not making it thru the stomach acids. Sublingual supposedly helps you absorb it into your blood stream. DD stopped complaining of fatigue once we insisted she start taking it sublingually instead of drinking the dissolved potion. Realize that there are 4 types of B12 (that I know of anyway): cyanocobalmin - found in most mutlivitamins, poor quality, some sites claim it has cyanide as a byproduct - not sure if this is true or not methylB12 - best form for those with MTHFR mutations, provided that other mutations like COMT don't tip the scales and make you a natural "overmethylator" hydroxyB12 - some say this is a better form for those w/o MTHFR or for those who are COMT+/+ or have VDR Taq -/- adenoB12 - another alternative for those w/o MTHFR or for those who are COMT+/+ or have VDR Taq -/- So short answer - sublingual may work better for you than the nasal spray. But which form of B12 depends on your need for more or less methyl donors. Maybe this sounds like too much minutia, splitting hairs. But I can tell you that one of my kids would have mood swings on any type except methlyB12 (she has MTHFR mutation) and the other kid feels "off" and angry on methylB12 and instead needs hydroxy or adenoB12. It really does make a difference - at least for my family.

While current laws prohibit the use of genetic information in determining health insurance coverage, it does not prevent the use of genetic information in determining life insurance coverage. The fear is that if you know about a statistical risk to develop a disease, you could be denied life insurance or face a higher premium because you're considered "high risk". This is currently true if you say you're a smoker. Even if you don't currently have lung cancer, you're required to disclose what you know and your knowledge of your smoking habits put you into a higher risk/higher premium category. Knowing about a genetic risk could potentially be used against you in the same way. Here's a good overview - make sure you read to the end. The insurance issue is discussed toward the bottom. http://flourishanyway.hubpages.com/hub/Should-I-Get-At-Home-Genetic-Testing As I said, I still went ahead with the test because the prospect of being able to alter the kids' struggles today far outweighed my fears about life insurance in the future. In our case, I don't think any genetic red flags were raised that wouldn't have been raised simply with a re-telling of the family history or heart disease. But some people do have legitimate concerns that make them decide to not do genetic testing. So I only suggest you make the decision with eyes open.

I unfortunately do get it. In the month that my DS was diagnosed with lyme (in '10) we'd been at this since '07 and had already done abx, T&A, Pex, steroids, IVIG. Now I was facing the lyme rabbit hole? A week later, my mom died. A week after that, I was laid off. And my DD was turning bipolar. My BFF was gently telling me I needed to get myself on Prozac because she was seriously worried about my own stability. In fact, it did put me into a 6 month tailspin in what might be described as a nervous breakdown. I was so empty, so exhausted, so utterly defeated and felt so very alone, even though my DH was supportive. But the reality was, there was no one else who was going to shoulder this burden for me. We thankfully had just started with an awesome LLMD, so I finally had some support. Hopefully your new LLMD will give you the same. But even with his help, the day to day hard work was still up to me. I made myself laser focus. It was too much to try to hold it all together on all fronts. My only goal was to get my kids well. Every brain cell went toward reading and forcing myself to be methodical in recording their behaviors, examining diet and supplements, etc. You know the drill. I'm sure you're already doing it. Lyme absolutely had to be addressed first. No fixes were going to stick with a chronic infection messing everything up. But I agree with you. To not see any changes after 6 months would've made me re-examine too. So hopefully your new LLMD will have a more effective approach. And the people on this forum and the huge knowledge you can gain from the archives will help too. So hang in there. I can say in hindsight that as hard as the journey was, it was so worth it. My kids have blossomed and are realizing the potential I always knew was there. My son has some yeast/gut healing to do after 4 yrs of abx, and he remains vulnerable to illness triggers - so it's not like I can say it's over forever. It could of course get bad again. But the nightmare of freefall is behind us. My daughter is very steady and happy. Best of all, neither remember much of the bad times. The PTSD is mostly my burden, not theirs. So hold on. Keep fighting. It's a winnable war.

Momcap - like you, the whole methylation thing was a real Eureka moment for me too. But like all wow moments, I'm finding that the things I read early on and took verbatim now need to be re-read and looked at in terms of the personal experiences I now have. The heartfixer document is, for me, my go-to document, since it's far shorter and more direct than Yasko's writings. But it was written in '08 and a lot more is being learned every day as patients come back and say "yeah, but...." and science comes back with a better understanding of the inter-relationships between genes. So I now try to insert the words "may" "might" "consider" into my thinking instead of "will" "should" and "is". For example, according to heartfixer, Yasko, MTHFRSupport and Rich Van K, my family members who are COMT+/-, CBS +/- and MTHFR C677T +/- "should" do better on hydroxyB12 rather than methylB12. According to the experts, methylB12 "should" make them overmethylated. Yet, when DH switched from methylB12 to hydroxyB12, he started feeling antsy, edgy, angry...for hours. He went back to methylB12 and feels good again. I had a similar experience when DD made the same switch, although it was harder to be sure because she couldn't articulate how she felt as well as DH. What a person eats also changes what "should" be vs. what actually happens. If someone eats a diet his in xyz, their supplement needs may be different than a person with similar genetics but a different diet. Plus having a gene mutation doesn't mean that mutation is expressing itself. So I now rely on heartfixer, yasko et all with the same level of "healthy caution" I take with my GPS. I rely on the general directions as I make my plans but I always rely on what my gut tells me when I actually get there and am sitting in a traffic jam or start driving into a dilapidated neighborhood I just know I shouldn't be driving through. Nick12 - I'm a huge fan of 23andMe testing. But in fairness, do search the archives for some discussion in the privacy and insurance concerns of doing genetic testing. I did the testing anyway, but it's better to make the decision fully informed than to have misgivings after the fact. I think the concerns about losing insurance coverage won't come to be simply because the testing is becoming so widespread, but there are no guarantees in life and it's best to make decisions knowing both the pros and cons.

Tried sending you a PM but it said you can't receive messages... check out this site: http://heal-thyself.ning.com/profiles/blogs/overwhelmed-where-to-start and specifically this blog http://heal-thyself.ning.com/profiles/blogs/whole-food-probiotics-101

I came across this site today and thought it was timely, given recent discussions on probiotics, yeast and gut health http://heal-thyself.ning.com/profiles/blogs/overwhelmed-where-to-start There are tons of blogs here on diet, treating candida, making your own probiotics, how to interpret gut health from studying stools...lots of good stuff. The one thing I caution is that some of these posts are a few years old - long before 23andMe could tell anyone whether certain things were "good" or "bad" for them. One post raves about epsom salt baths and how they are a "must" for everyone. But if you have a CBS mutation, it's actually more of a "must avoid" as my DD can tell you, after emerging from baths I insisted would be helpful, her skin red and itchy from an OD of sulfur (oh, their therapists will have so much to talk about when they're grown). But in general, I found this to be a pretty realistic place - with more than one blogger acknowledging that not everything listed as a recommendation would be practical for every person. Worth checking out.

If your son is CDC positive for lyme, then you need to find him a lyme literate MD (LLMD) to get him the right treatment. A pediatric group won't be able to help you. The fact that the advil helps tells you that inflammation is at least partly driving his behaviors. You may want to make it part of his daily regiment. One dose with breakfast and one dose at dinner. Sporadic dosing won't give you the same improvements as steady dosing will. The fact that he also responds well to some of the supplements is also a good sign. It tells you that finding the right interventions can be really helpful. However... I'd really reconsider starting three new supplements on the same day. I try to always introduce only one thing and give it for 1-2 weeks before making any other changes. Also, when we started treating pyrroluria, it took us 5 months to build up to the right zinc/B6 dosage. We stayed at the starting dose for a month, then built up once a month. At our third increase, we had to back down and hold steady for an extra month before building up one more time. If the conveyor belts have been stuck for a long time, you need to re-start slowly. And not everyone has pyrroluria. So if you haven't tested for this yet, you may want to either only introduce a low dose or wait until you get results. You also have a fever in the picture, further muddying the water. I know how tempting it is to throw spaghetti at the wall and hope something sticks. Lord knows I've done it. But I always end up regretting it and have to start over because I end up not knowing what caused a problem and what helped. Financially, we had to bite the bullet for awhile and pay for each kid to see our LLMD - they each needed his full attention. But as they've gotten better, we're able to cover both kids in one visit, cutting the cost in half. LLMDs generally don't take insurance but they usually give you the claim form you need. You pay for the visit up front but then generally get reimbursed 60% for using an out of network provider. So it's not entirely out of pocket. At your initial consult with your daughter's LLMD, you may want to see if there's a way the LLMD can spend 20 min of the appt examining your son so that he can be considered a patient (and then make a full appt for your son as soon as they can get him in). If you can do this, maybe the LLMD can order a pyrroluria test for him as well without having to wait for his own initial consult. You may also want to read the archive discussion on the pros and cons of doing 23andMe genetic testing - which would give you better guidance for deciding which supplements may help your son the most with his moods.

Hope is right. My DD takes 67mcg of this product every other day http://www.holisticheal.com/methylmate-b-nutritional-supplement.html and one sublingual tablet of this product http://www.amazon.com/Source-Naturals-MethylCobalamin-Flavored-Sublingual/dp/B001G7R8J2/ref=sr_1_1?s=hpc&ie=UTF8&qid=1382128665&sr=1-1&keywords=source+naturals+methylcobalamin+vitamin+b-12 When she took the B12 without sucking on it first, it had little effect. It seems to work much better when taken sublingually. It took several months of trial and error to find the right doses for her. Too high brought on the same bipolar mood swings as having too little. My personal bias is to use products that have only one thing in them and then, once you find the right dose of each, then you can look for a combo product that has the ratios you need. Most adults who start out treating their MTHFR issues start at 400mcg. They may eventually go up into the grams, but that's not a good place to start IMO. For a child, start with one drop of the liquid (67mcg) and go from there, waiting a week before moving up, then backing down if you see a return of anger or anxiety. You don't necessarily need P-5-P for MTHFR issues. It can help people with detox and to support the formation of gluathione, but depending on your other genetic mutations, you may or may not be able to tolerate a lot of it. You'll also find that lyme can cause rages. But i think you've been given some good advice here and hopefully this will be one piece of the puzzle for you.

PM'd you, as past public discussions of doctors have gotten heated. So we try to not use full names of doctors and I'd only be comfortable sharing my experiences privately. To view a PM, look in the upper right corner of the forum screen and you'll see an envelope to the right of your screen name. Click on it to go to your private mailbox.

qannie - I've followed this blogger's journey intermittently for years. I don't think she's saying the probioitcs caused Pandas. This mom has done it all and recovered her child. I came away feeling like they'd gotten to a good place but not the place she knew in her heart was possible. Like all of us, she'd added a stable of supplements that served a purpose. But now she's found that the purpose may be done and now side effects may actually be part of the problem. Deedee - thanks for posting. Great timing. DS has been off abx for 6 months and doing really, really well. But he has some residual adhd and tics and a stool test revealed yeast problems. For him, it isn't candida but sacc Boulardis that's the problem. Unlike some who tolerate it well, my son has always tanked on Sacc B supplements. So when we found overgrowth of Sacc B, the LLMD shrugged, until I said "Noooo - this is very bad for DS - he gets horrible OCD and tics from Sacc B". So he went on diflucan 6 weeks ago. The OCD went away within days and hasn't come back. The adhd and hypermotor stuff went away within a week. I was so stoked. But then, the tics came on in a big way. DS always tics from die off. So I was ok with it. Ride it out. We've survived lots of herxes. Except this herx hasn't stopped. After 5 weeks, it was bad enough that he couldn't hide it in school. So last week, we took a diflucan holiday. The tics have subsided in a big way but now the adhd and muscle pain and brain fog and frustrations are coming back. It feels like fungal issues are still there. So re-started diflucan last night. But I've been wondering about probiotics and if they aren't contributing to the fungal problems instead of curing them. We switched to a high bifido probiotic 6 weeks ago when we started the diflucan and stopped the theralac (which based on stoll test wasn't keeping the bad yeast at bay). I've skipped probiotics altogether the past few nights, wondering if they're part of the problem. Coincidentally, DS has craved less carbs. Somehow it all seems tied together, I just can't figure out how yet. So I'm taking this as a "sign" that this just might be something to re-examine. More is not always better. Maybe we need a probiotic holiday. i know my wallet would sure appreciate that!

Bartonella has a roughly 3 day life cycle, so while I'd definitely test for lyme via Igenex and possibly bartonella again, the annual October thing made me think of mold. Mold spikes in the fall, as falling leaves trap moisture, closed windows create a less aired-out environment.... I'm sorry you're struggling so much. My DS also tanked after IVIG and it was only afterward that we found lyme. He'd been tested via Quest Western Blot a few months prior to IVIG and was negative. A few months after IVIG (we waited 10 weeks to make sure donor antibodies weren't part of the picture), we tested via Igenex - many positive or indeterminate bands, including the ones most unique to lyme (31 and 34). So if there was one silver lining to our IVIG horror story, it was that maybe it made his immune system strong enough to produce antibodies and give us the test result we needed to get us on the right treatment path. In hindsight, I view the three months of post-IVIG H**L to be one long, unsupported herx. So I'd think an Igenex test would be helpful and if your doctor is willing, consider some of the tests for inflammation and mold sensitivity listed here: http://www.survivingmold.com/diagnosis/lab-tests (the whole site is helpful)

Are there any positive IgM bands? Obviously your son has been fighting lyme at some point to create 4 bands and if he hasn't been treated for it, then chances are high it's still there. If that's the case, a few weeks of augmentin won't do the trick. Not to scare you, but my son had undiagnosed lyme when he had his one and only IVIG. It was a bad experience for us. There were many things we could have/should have done post-IVIG to support him had we known about the lyme. So if he does struggle post-IVIG, look through the archives to look into controlling inflammation, helping the body detox, and treating lyme on an on-going basis. As for any research - none that I know of. They can't even get research for "classic" pandas or lyme, let alone some combo. But the anecdotal stories were common enough for Swedo to propose the name change to PANS. So it may be a bias but I think it's now recognized among the specialists that if strep alone doesn't seem to be the culprit, mycoplasma, viruses and lyme are the next things to investigate.

I'd be really turned off by and skeptical of a doctor who robbed you of your hope based on his experience of treating one older child who didn't respond. Like some of my other "old timer" friends who've posted, my son took a long time to get well. We did Pex and 1 IVIG that made him worse, not better. He was sick for a year before we found a Pandas doctor who started treatment. But even then, we didn't get to the root of his problem (lyme) until he'd been sick for 2.5 yrs. We then did lyme treatment for 2.5 yrs (plus integrative treatments for nutritional/methylation/yeast problems). He's now a different kid - in all sorts of good ways. In 3rd grade, he took an assessment test and scored very low normal range (93). in 5th grade (6 months ago) he took the same test and scored very high normal range (110) - a nearly 20 point swing on a test that's supposed to measure aptitude. His brain got well and now he's gone from a C- student to a B+ student. He was sick for 5 yrs but has no permanent "brain damage". He's healing and growing into the kid I always knew was trapped inside. is he still at risk for a Pandas episode? I'm sure the answer is yes. I don't think I'll breathe again until he's into adulthood. But he's making great strides forward and I just can't believe that any kid is a lost cause or that a parent should be told to just "accept" the "as is". If in your heart you feel your son is more than what the outside world sees, then keep fighting. You've hardly explored all options. Don't let someone rob you of hope - ever.

My daughter contracted Epstein Barr Virus and it really drained her - you may want to test for EBV and Mono. Even after she recovered, she complained of faitgue - a lot! Long story short, she tested positive for a MTHFR mutation and I started giving her methylfolate and her mood swings disappeared. But the fatigue didn't. It was then I learned that I was giving her methylB12 the wrong way, She used to refuse to take it sublingually so I'd dissolve it in water and let her drink it. But methylB12 doesn't survive the stomach acid very well. So we taught her to suck on it under her tongue and the fatigue disappeared in a matter of a week. It might be worth looking into MTHFR and having B12 blood levels tested.Together, folate (B9) and B12 make ATP - the "ingredient" essential for cell energy. As for his inability to lose - my DS11 used to struggle with this. Using his 23andMe info, he's now on a B complex that's higher in niacin and helps him with "overmethylation" symptoms. He now loses with grace and is generally more mellow. I know I sound like a broken record, but understanding a child's methylation issues and giving them the right forms and balance of nutrients can produce amazing changes in neurotransmitter balance. If you don't think infection is playing a role, this might be worth investigating.

Cool article - wish Utah weren't so far away... http://www.sciencedaily.com/releases/2013/10/131003095712.htm In part: Whole-genome sequencing, meantime, revealed that the patient carries at least three gene variants, or alleles, that have been associated in other studies with neuropsychiatric illness. These variants were in genes that encode proteins called BDNF, MTHFR and ChAT. The BDNF gene variant is of particular interest. Its protein is a prime growth factor essential in the early development and subsequent healthy function of the brain and nervous system. The other two variants have also been associated in past studies with possibly increasing the risks of mental illness. Other gene variants were found that have implications for the way the patient is either able or unable to metabolize particular kinds of drugs. They also used deep brain stimulation for this particular patient due to his severely disabling OCD. But it shows that at least some researchers are starting to see how this can make big changes.

Have you looked at the symptoms of lyme? My son did not improve with IVIG but made a full recovery after finding and treating lyme. His lyme symptoms were very very close to Pandas symptoms, with the addition of muscle and joint pain and fatigue. But lots of psych symptoms as well.

CBS is the abbreviation for the gene that sits at the start of the transsulfuration/detox pathway. If you have a mutation on this gene, it hinders your ability to handle sulfates and you produce more ammonia that your body struggles to detox. You can test for CBS by doing the 23andMe DNA spit test ($99). You can search the archives for 23andMe or methylation of CBS for more info. I tend to get carried away when discussing this, so I'll keep quiet and just refer back to older posts

Agree with Rowingmom. You can tolerate some sulfur abx and still have a CBS problem with glutathione. My DD was on bactrim for 8 months and was ok. But she can't handle glutathione precursors like NAC or ALA (never did IV push). With CBS mutations, it can be a matter of degree. Like a bucket that can hold 12 ounces but try adding 14 ounces and it'll spill over. Have you tested for CBS?

CamK II is involved in the creation of memories. If it's high, it can interfere with recall and/or the formation of memory. I used to explain to teachers - "it's like all his knowledge was on index cards and stored in a card catalog. This disease came in the middle of the night and tipped all the trays upside down. Now all the cards are scattered on the floor. The knowledge is in there somewhere, but he can't find the right index card." Anti-inflammatories helped with rages, as does niacinamide (vitamin B3). From your posts, it sounds like there's another infection. Not bashing your doctor, but he isn't reknowned for his willingness to consider a wide range of infections. I'd personally be asking him to order an Igenex test for you, but I don't know if he'd be willing. Maybe he'll order mycoplasma test? You could also ask about a C3d immune complex test. This test measures how activated the immune system is. It doesn't tell you what infection is there, but it can tell you "hey, the immune system is very busy in there - some enemy must be lurking." I know how terrified you must feel. But try not to despair. Just keep digging.

Yes, my son's symptoms got much better during a fever but then would explode once the fever broke. For my son, his tics come when he's trying to detox and can't get the job quickly enough. The tics, for him, are a response to "poisonous" toxins released by dying bacteria - they seem to effect his nervous system or somehow interfere with the signaling between neurons that control movements and cause tics. When he's not fighting anything or is fighting an infection in a way where his waste disposal system can keep up with the toxins in the body, he has no tics. If this were also true for your DD, it would make sense that tics would come after a fever broke because that would be the time where toxins were at a peak - like bodies littering the battlefield at the end of a battle. I'm sorry you're striking out with your local doctors. I had the same experience. By the time a condescending neurologist agreed to run an ASO for me (he'd never heard of an antiD-Nase B test and looked at me like "you read too much on the internet") - my son was 6 weeks past his positive strep swab and his ASO was normal (ASO peaks @ 3 weeks). He then dismissed Pandas even more than he already had. The experience led us to a Pandas specialist 10 hrs away. It wasn't fun doing all that traveling, but it was worth it to get my son on the path toward getting better. I do personally think that "traditional" OCD and Tourette's are very different than Pandas. I believe each have a medical cause but I don't believe infection is the universal or only cause. I've never heard a Pandas specialist say it was all Pandas either. But the thing is with "traditional" OCD, the average age of onset is 10. And someone with traditional OCD has periods where symptoms wax and wane, but rarely do they have periods where symptoms are completely gone. Pandas kids do have periods where there's no OCD, no tics. The second distinction is that Pandas kids usually have a "saw-tooth" pattern of symptoms. They spike almost overnight, out of nowhere, and then slowly dissipate once you treat the infection. In traditional OCD, symptoms tend to build up/wax gradually - the person can feel it getting worse over a period of time, usually not "overnight".

Holy cow - it's like you got 4 Aces in that poker hand! I've never seen anyone have so many mutations that all effect neurotransmitters. Your DD must have awful mood and anxiety issues. I have some obligations to take care of and am about to get offline, but my advice is to take this document http://www.heartfixer.com/AMRI-Nutrigenomics.htm and copy it into a word document. Then delete the sections that don't pertain to you, including the recipes et al at the back. Then go thru it all and bold things that are important - what to add, what to avoid. When you get to the section about COMT and VDR Taq, go thru it a few times, then come back to it later, js to make sure you come to the same conclusions the second time. Often, it takes more than once before getting this part straight in your head. Then on a separate piece of paper, write down the things you're "supposed to" supplement and the things you're supposed to avoid. Do a sanity check. I wasn't about to add all the supps they suggest for CBS, especially Yucca, which can increase estrogen. I didn't add carntine b/c it's contraindicated for those with seizures and my DD has had febrile seizures. No way was my DD giving up ice cream. So you need to research each thing as it pertains to your situation. Then come up with a workable plan of what you're going to add or avoid. My personal experience has been to address things in this order: CBS MTHFR COMT/VDR MAO/BHMT You may find you're better with hydroxyB12 rather than methylB12 due to her other mutations. You may find niacin (B3) is a helpful thing to have on hand as you go thru all this. it's tricky as you do trial and error dosing and layering and inevitably, you screw up. I bought empty gel caps and put approx 50mg of niacin into each one. I keep them in the cabinet and when a sudden storm blows in, I make DD take one and within the hour, she's calmer. I then make adjustments to tomorrow's doses of methyl groups. If you are using NAC, curcumin, milk thistle or quercetin, consider stopping these as you address CBS. Curcumin/Enhansa could be especially problematic because it's high sulfur (bad for CBS) and it's an MAO inhibitor, which is the last thing your DD needs, as MAO-A +/+ means her MAO degradation of neurotransmitters is already naturally inhibited. You'll also want to avoid cough medicines are anti-depressants that are MAO-I's. Copper helps upregulate MAO, so you may want to have her zinc/copper ratios checked and if needed, make sure she supplements with 2mg copper daily. For MTHFR, I highly recommend starting with Yasko's liquid methylmate B http://www.holisticheal.com/methylmate-b-nutritional-supplement.html because you can titer up in small 67mcg doses. Once you settle on the right dose, you can look for a pill or a form that also combines a B12. But to start, I'd recommend separate supps for methylfolate and hydroxy or adenoB12 so you can tweak each one. It doesn't always go smoothly. There's a learning curve and every body is different. But what's fascinating is how quickly you can see changes happen - good and bad. if you screw up, its not weeks of suffering. Feel free to PM if you have specific questions. I have all of these mutations in my family, just not all of them in one person. So I can't tell you exactly what you should try, but I may be able to share my mistakes.

We only did 1 HD IVIG. It was horrible. The one good that came of it was that when he didn't "follow the script" and get better, it forced us to look for what else it could be (I'd always dismissed lyme b/c he was so clear cut Pandas with sudden onset after strep). After IVIG, he tested positive for lyme and that - finally - put us on a path toward healing (pyrroulria and methylation also ended up being part of the answer). I think IVIG has been great for some kids. But just like lyme isn't everyone's problem, IVIG isn't everyone's solution. There can be multiple causes of these symptoms and multiple paths to healing. Sucks that we have to be the ones who do all the sleuthing, but hang in there. Just because you feel you exhausted one avenue doesn't mean you'll be stuck forever. It just means you need to cast a wider net. The fact that he responded well initially tells you there's an inflammation piece. The fact that he's declining tells you you haven't found everything yet. But you will.

50mg of niacin (vitamin B3) - helped stop rages w/in the hour. (if you can't find a 50mg capsule, buy what you can and open up the capsule, sprinkle approx 50mg into some food).