LNN

Here's a good site on a variety of probiotic strains http://probiotic.org/lactobacillus-rhamnosus.htm Hard to say from this site what specific strains might be lumped under the heading GG. So it's not clear to me if Culturelle contains this or not. But you could always do a trial on something else. I personally prefer brands that are refrigerated - just makes me feel like more of the little guys are alive when they go into the gut. But no scientific basis for this - just my bias. And for the price of Culturelle, you can find other brands that are both refrigerated and/or contain higher CFUs or different strains. So I'd suggest rotating off of Culturelle and seeing if a different brand makes any difference. Realize that giving large amounts right off the bat can cause gas/discomfort and theoretically issues related to die off of a bad bacteria being crowded out by the probiotic strains. So it's about balance - not so low that yeast has a foot in the door but not so high that the gut gets overwhelmed all at once. Also, from personal experience, I'm not sure probiotics alone is enough to fend off yeast. It's a good part of the plan, but after years of relying on probiotics, I came to realize that an unexplainable flair was actually due to yeast. I added garlic pills and after a few days of die-off behavior, both kids showed big behavior improvements. I found this site helpful http://www.medicalinsider.com/bacterial.html#top. you can also google "natural yeast treatments" for other ideas. I think oregano is also a good option and is a good prophylactic anti-viral as well (DD seems to be allergic to it, so we stick with garlic). My son is one who reacts badly to Sacc B. So we've looked at options in addition to probiotics (both kids use Theralac daily). But even with probiotics and garlic on board, DD still struggles with it sometimes. She is now on a tincture called A-FNG from Byron White and it seems to help. If you suspect yeast, ask for a blood test and possibly diflucan/nystatin, followed by a longer term anti-yeast plan. I was amazed at how similar yeast problems mimic PANS behaviors (thanks JAG).

I agree - please email your thoughts/ideas. Don't worry about how it's worded or if it's a "good" idea - that's for researchers to decide if it's something they can/want to pursue. Even if it doesn't lead to a specific study, it can spark a thought or get tied into another study. This is a brainstorming exercise. So no idea or question can be "bad". As for a reply, I wouldn't expect one. The conference starts this morning, so things are already in full swing for those involved. I'm certain the emails will be checked prior to tomorrow's session but there may not be time to compose a reply to let you know it was rec'd. I think both of the above questions should be brought up. I've already sent my very long list, so please forward these on. If anyone can come up with good questions, it's this group!

This problem - and it is a huge problem - also exists in the lyme world. Find someone who offers relief and the line quickly winds around 4 city blocks, with very sick people trying to get appointments 6 months from now, regardless of cost. Jennifer - totally understand your frustrations and while I do get what everyone has said, I still empathize with your situation. There are so few doctors and so many sick kids. What's needed is a greater acceptance of PANS and more concrete treatment protocols - backed by organizations with clout among clinicians. When the IOCDF comes out in support of PANS and antibiotics treatments, going head to head with the AAP in news articles, or devotes web space and research money to the cause, that's huge. When Pandas Resource Network gets Connecticut congressmen to sponsor legislation that could lead to insurance coverage for IVIG - huge. When Pandas Network organizes a west coast symposium - again, huge advances. It's really easy to feel like we're at the mercy of a handful of doctors and you have to accept these limitations because it's all we've got. But in the 4 years I've been at this, the list of treating doctors has grown significantly (there was only one name tossed around when I first came here). The IOCDF, AutismOne and now ILADS conferences have all had Pandas presentations and even entire tracks on the subject. Newspaper coverage - local, regional - even the Wall Street Journal and Discovery Magazine - none of this existed a few years ago. It's the parents who have shifted the landscape - either personally or through their work with organizations. So if this topic gets you p.o.'d, pick your favorite non-profit and support them - either financially or with volunteer time or with your input - tell them what you want them to do. Be willing to help make it happen. The IOCDF is asking for research suggestions - email them your ideas. By making PANS more accepted, by expanding the list of treatment options to include antibiotics, IVIG, ERP therapy but also integrative health and testing (of genetics, methylation, neurotransmitters, thyroid etc), we can broaden the base of doctors willing to treat this. Change happens when the parents push for it. I do think the doctors need to be aware of the growing gap between patient needs and their ability to meet those needs. Not acceptable. And I don't want to hijack the thread and take away from Jennifer's frustrations. But we also need to develop more options. It's outrageous that a mom from Canada needs to get a passport to get help for her kid or that a family already financially strapped needs to pay for a response to an email. On the other hand, I get why this happens. I think at least part of the answer is to recruit more docs and support the organizations that are making things happen.

Posted with permission: I've been asked to post this request for parent input. If you're attending the conference in Chicago, please attend this session. If you can't make the conference, please email Susan with your input. This session is to brainstorm ideas for researchers. Research into the cause and effects of PANDAS and PANS is still in the infancy stages. Many parents have ideas about what is working for their children. As IOCDF works towards fundraising for research into PANDAS and PANS, we are interested in hearing thoughts from parents about what questions they feel are unanswered. These ideas may be used in future research funding, or may simply be suggested to researchers independently. This brainstorming session is organized and moderated by Dr. Michael Jenike, and will be attended by another IOCDF member as well. It is for parents only. Parents who are unable to attend, may also submit thoughts or concerns to Susanb4312@gmail.com in advance of the conference, and they will be included. This session is not intended to answer parent questions about specific cases, but rather to begin the process of gathering observations from those who are closest to the illness. This session will be held Saturday at 9:45 - 11 am in the Old Town Room, on the 2nd floor of the Marriott. For information about the IOCDF Conference in Chicago, please check: http://www.ocfoundation.org/conference/.

Tryptophan works well for my DD (along with motrin). You might also research Gaba. But I'd also try ERP. Feeling in control over your own emotions is a powerful "drug" that helps the supplements work that much better. But I'd research anything fully and check it against all meds she may be on. For example, I have no idea how tryptophan might react with valerian root. If you can, consider a visit to a naturopath while you wait for your appt. They often can take patients quickly.

My understanding is that the IVIG is comprised of antibodies from 1,000-10,000 donors. So I'm guessing it would be pretty diluted. Also, I thought the Pandas problem was that the antibodies your own body made were "confused" and programmed to attack proteins in the outer surface of basal ganglia cells that resembled strep proteins. The antibodies in IVIG are theoretically "normal" and don't make the mistake of confusing basal ganglia cells. Instead, IVIG gave the body an army of well-heeled soldiers. It's been a long time since I studied up on any of this but I think the doctor who suggested this is misinformed. JMO.

Love the general contractor/tile analogy! Here's Bock's site: http://www.rhinebeckhealth.com/rhc/index.php Nancy's your best source of info. Here's O'Hara's site: http://ihealthnow.org/ and a Youtube video that gives you her perspective on treatment. You can search YouTube for more videos by both doctors that are longer/more indepth. Neither are homeopaths. They're integrative - from the DAN world. Both require a plane trip into the NYC area and then a rental car. I don't know either doctor other than by reputation. But they're on my short list if we ever had to add another doctor beyond our LLMD. On the west coast, there's Klinghardt in Seattle or you can PM SFMom. As for homeopathy, I'd PM Stephanie2.

In Oct 2010, after 2+ yrs of Pandas war, emotional rollercoasters and financial blood letting, my DS was dx'd with lyme/bartonella. Two weeks later, my mom died. A week after I got home from the funeral, I was laid off. The triple whammy led me to what I sort of kiddingly refer to as my nervous breakdown. Friends started telling me I needed meds. I was just empty. But you do go on, find a way to put one foot in front of the other. Because you have to. So somehow, you do. Sometimes being knocked down ends up being a gift. When I look back two years later, that October was a turning point in nearly every aspect of my life. The lyme dx was the start of recovery for my son. We eventually went on to find other health issues that were key to permanent recovery, but that was the month that set us on the right road - finally. I had to completely let go of what I thought I knew and start over. In doing so, I let go of some beliefs that were really holding me back. I totally sympathize with where you're at. I can't tell you how to find your way. But I can tell you that the place you're in may be your turning point. Gifts sometimes turn up in the strangest places.

I think the answer depends on what you hope to do or change in your treatment. We can all suggest lots of tests - but what do you want a doctor to do with the info? Each doctor has his own approach and focus. When you say your son is "complicated" it makes me think of topics like methylation, pyroluria, yeast, amino acid imbalances, mold - all that "new agey" stuff so near and dear to my own heart - that are often at play in the Pans kids who don't respond quickly or fully to typical Pandas or lyme treatments. For my kids, their answers are in this new agey mix and IMO, neither of the docs you mention dip their toes in this pond very often. Even my own LLMD, who's totally into all this other stuff - sometimes gets focused on one or two issues du jour (like if he's seen a lot of issues with parasites in his patients, we end up discussing parasites that visit). So I usually need to scour the internet and "cram" before our appts, making a list of topics I want to explore, tests I want to run, and I sort of back seat drive during the appt. Sometimes he goes along, sometimes he tells me why he thinks my ideas are off base. But together, we work on an evolving plan. I long ago gave up on the idea of walking into any doctor's office and expecting them to have all the answers and tell me what to do. So if you're wanting to pursue more conventional Pandas treatments to see if you've been missing something, I think Dr T is probably the most open to novel tests and theories but may lack the lyme experience (my impression is that he is still skeptical of ILADS protocols and testing - someone tell me if I'm wrong). Dr B will probably order blood work to explore an immune problem and justify the IVIG if that's your plan but probably isn't going to have more experience with lyme than your current doctor. Just my impressions - haven't spoken with either of these docs in over 2 yrs. So I could be way off base. If you don't think your LLMD is getting to the bottom of things, you may want to broaden your list of docs and look into integrative doctors - Bock, O'Hara and others - or look for a local DAN to collaborate with your LLMD. I'm not trying to dis either of the doctors you mention. They've certainly helped a lot of Pandas families. But your lyme dx changes the landscape, so if it were me, I think I'd travel to a doc who has experience with more than Pandas in order to justify the airfare. JMHO

You may want to discuss the possibility of doing a combo abx. Lyme is almost always treated with more than one abx at a time. It won't help you with diagnosis, but it also won't hurt you to be on 2 abx during an Igenex basic panel test. It's possible you could at least get a break from the sinus issue and/or symptoms that aren't resolving. We initially tried zith+augemtin but this had no effect (it does help many, just not us). When we first started with our LLMD, he kept these two (so as not to change more than one factor at a time) and added bactrim. Saw great improvements in that first few months. Another thing to consider is biofilms if recurring sinus issues are at play. But I don't think I'd try to tackle those on my own or without an LLMD. I hear you on not wanting to go down the lyme trail. Fraught with controversy, a money pit, doctors contradicting one another, guessing at what's going on - oh wait - that's Pandas. So fear not. You're already Alice in Wonderland. Looking into lyme probably won't make life any crazier than it already is. For some, it helps clear roadblocks. It was a good course to pursue for my son. I'm actually drafting a blog about what "normal" feels like after so many years of treating illness. (of course, my DD is flipping out on me just so I don't get full of myself and start to get used to "normal").

The standard WBs that follow CDC criteria (Quest, Labcorp et al) aren't terribly reliable. What makes the Igenex WB different is that it looks at two of the lyme-specific bands that the CDC tells other labs to omit (due to ancient/failed vaccine plans that would've made testing these bands unreliable - but when the vaccine failed, these bands should've been added back to the criteria - grrr). Can't recall which two bands - 31 and 34?. We did the Igenex WB while on abx. Came back with 5 positive or indeterminates. But if you want to run the PCR test (which I think looks for DNA evidence of lyme, rather than antibodies to lyme), then I think you need to be off abx. That said, if you truly want to get a test with the least amount of debate, and you can go off abx for 4 weeks, I'd recommend the "new" lyme culture test from Advanced Labs that came out last fall. Your doctor needs to order the kit, it costs about $600 and insurance doesn't cover. But they culture a blood sample and take a picture of spirochettes in your blood - like a strep culture. If you have a photo of a spirochette in your blood, there's not much to debate about whether you have lyme. http://www.advanced-lab.com/

My DS was 6 when he had his T&A and had an easy recovery (if I forget about how he threw up on me in the back seat of the car on our way home from the hospital - thankfully just Popsicle juice). One or two days of pain and slurpy foods then back being a kid with lots of energy. We only needed the tylenol with codeine for a day or two. He did avoid "sharp" foods for two weeks - crackers, pretzels etc. The biggest risk is at the 2 week post-op mark, when the scabs are starting to fall off. if they fall off before the skin underneath is completely healed, you can get a lot of bleeding that could potentially land you back in the hospital for cauterization. After the T&A, my son had amazing healing. It wasn't instant, but there was no doubt that the tonsils/adenoids were harboring something that kept putting him into a tailspin. Many many symptoms improved in the months following. (tho he had undiagnosed lyme, so recovery wasn't complete). Soooo glad to have them out! DS was on amoxicillin prior to T&A, then switched to zith post-op but we ended up on augmentin, as the amox family seems to work best for him. Zith doesn't seem to protect him well.

Here are some links that give an overview: http://altmedicine.about.com/od/alphalipoicacid/a/alphalipoicacid.htm http://www.wellnessletter.com/ucberkeley/dietary-supplements/alpha-lipoic-acid/# http://lpi.oregonstate.edu/infocenter/othernuts/la/ http://www.umm.edu/altmed/articles/alpha-lipoic-000285.htm Excerpts from the above: Alpha lipoic acid is a fatty acid found naturally inside every cell in the body. It's needed by the body to produce the energy for our body's normal functions. Alpha lipoic acid converts glucose (blood sugar) into energy. The body actually makes enough alpha-lipoic acid for this basic function. Alpha-lipoic acid acts as an antioxidant, however, only when there is an excess of it and it is in the “free” state in the cells. There is little free alpha-lipoic acid circulating in your body, unless you consume supplements or get it injected. Alpha-lipoic acid is a versatile antioxidant—it helps deactivate an unusually wide array of cell-damaging free radicals in many bodily systems. Antioxidants attack "free radicals," waste products created when the body turns food into energy. Free radicals cause harmful chemical reactions that can damage cells in the body, making it harder for the body to fight off infections. They also damage organs and tissues. Other antioxidants work only in water (such as vitamin C) or fatty tissues (such as vitamin E), but alpha-lipoic acid is both fat- and water-soluble. That means it can work throughout the body. Antioxidants in the body are used up as they attack free radicals, but evidence suggests alpha-lipoic acid may help regenerate these other antioxidants and make them active again. In the cells of the body, alpha-lipoic acid is changed into dihydrolipoic acid. Alpha-lipoic acid is not the same as alpha linolenic acid, which is an omega-3 fatty acid that may help heart health (See also: Alpha linolenic acid.) There is confusion between alpha-lipoic acid and alpa linolenic acid because both are sometimes abbreviated ALA. Alpha-lipoic acid is also sometimes called lipoic acid. Because alpha-lipoic acid can pass easily into the brain, it may help protect the brain and nerve tissue. Researchers are investigating it as a potential treatment for stroke and other brain problems involving free radical damage. Peripheral neuropathy can be caused by injury, nutritional deficiencies, chemotherapy or by conditions such as diabetes, Lyme disease, alcoholism, shingles, thyroid disease, and kidney failure. Symptoms can include pain, burning, numbness, tingling, weakness, and itching. Alpha lipoic acid is thought to work as an antioxidant in both water and fatty tissue, enabling it to enter all parts of the nerve cell and protect it from damage. Alpha lipoic acid can cross the blood-brain barrier, a wall of tiny vessels and structural cells, and pass easily into the brain. It is thought to protect brain and nerve tissue by preventing free radical damage. Side effects of alpha lipoic acid may include headache, tingling or a "pins and needles" sensation, skin rash, or muscle cramps. There have been a few reports in Japan of a rare condition called insulin autoimmune syndrome in people using alpha lipoic acid. The condition causes hypoglycemia and antibodies directed against the body's own insulin without previous insulin therapy. The safety of alpha lipoic acid in pregnant or nursing women, children, or people with kidney or liver disease is unknown. Possible Drug Interactions Alpha lipoic acid may improve blood sugar control, so people with diabetes who are taking medication to lower blood sugar, such as metformin (Glucophage), glyburide (DiaBeta, Glynase), should only take alpha lipoic acid under the supervision of a qualified health professional and have their blood sugar levels carefully monitored. Animal studies indicate that alpha lipoic acid may alter thyroid hormone levels, so it could theoretically have the same effect in humans. People taking thyroid medications such as levothyroxine should be monitored by their healthcare provider. Alpha lipoic acid can help your body synthesize glutathione, the mother of all antioxidants. Gluthatione supplements are poorly absorbed, so taking ALA is one way to help increase your glutathione levels and help the bid rid itself of damaged cells and toxins. I tend to think of binders like charcoal and bentonite clay as little garbage trucks/sponges that soak up toxins in the bowels. But glutathione and ALA are the garbage men that gather and carry the toxins thru the body into the excretion systems. There are other antioxidants that are also helpful, like resveratrol, which I also like to use for my son. But it's usually derived from Japanese Knotwood (a plant) and my DD is allergic to it. She responds well to ALA. ALA crosses the BBB, so if you have any concerns about metals like mercury, it shouldn't be used until you feel the body's load of metals has been addressed. Otherwise, ALA could theoretically bind to (chelate) mercury but move it into the brain instead of out of it. However, we've tested DD and this hasn't been an issue for her. We also use it for my son, who at one time tested slightly elevated for mercury but doesn't seem to have an issue anymore (did a small amount of chelation awhile back). So like most supplements, it holds a lot of promise but it may not be everyone's answer. My DD takes 500mg once a day. It seems to help her feel better, calms her behavior a little. Sort of like motrin does. Except ALA is acting as an antioxidant, which makes me feel better about giving it. As far as I know, it can be taken any time of day but works best on an empty stomach.

I have read on various sites that bartonella has a short life cycle - some say a 3-4 day cycle, others say a 10-12 day cycle. Very hard to find solid research (here's a very brief background http://www.frylabs.com/bartonella.php). Many LLMDs suspect bartonella when neuropsych symptoms are dominant. But to be honest, I think some of that's because until our Pandas kids started coming to them, many just dealt with lyme that manifested with physical symptoms. "Neuro"lyme often gets a footnote. But I suspect that in our kids who are predisposed to neuropsych issues, both lyme and bartonella can be behind the OCD, rages, etc. Still, lyme has a 3-4 week cycle, so the 9 days might point to bartonella. Hard to get an accurate lab test, as the link I included explains. Fry Labs is generally pricey but I include the link FWIW. My impression is that Dr T is reluctant to go down the lyme/co-infection trail but I sense his patients are pushing him a little closer as time goes on. Specialty Labs - a division of Quest - has a bartonella test that's covered by insurance and considered the best among the bad. So you could ask about that. But if it came back negative, I don't know if you could rely on the results. The other option is to do an amino acid test http://www.greatplainslaboratory.com/home/eng/urine_amino_acid.asp to check levels of 20-40 neurotransmitters. This might help you supplement to help with the moods while you try to figure out if any infection is causing the 9 day cycle. My DD responds really well to tryptophan, a seratonin precursor. This doesn't do much for my DS but tyrosine (a dopamine precursor) really helps him. So it's possible that doing an amino acid test could help you narrow down a neurotransmitter deficiency and treat accordingly while you continue your hunt for the trigger. Living through a rough period with my DD right now, so I can really sympathize.

We don't use NAC, so I can't advise on dosing. My DD has had negative reactions both times we've tried it (depression, increased anxiety). So we use the alpha lipoic acid as a glutathione precursor (500mg 1x/day). I don't know if her reaction to NAC was a herx - it's possible she has some sort of biofilm issue but she has months of goodness so it doesn't suggest the sort of lifecycle flairs you'd see if films were the problem. I suspect her negative reaction was due to some sort of methylation problem (as I understand it, a negative NAC reaction isn't that unusual for those with certain methylation genetics). My DS is on an abx holiday as part of his lyme treatment. He was almost 3 months symptom-free, so one common lyme protocol is to stop abx and see how you do. If you stay good, you're done. if you relapse, you consider the possibility that lyme is still there, hiding from the abx. So we've talked about pulsing if symptoms creep back (and they seem to be creeping back now - which isn't a surprise - we see LLMD next week). The pulsing would be part of our treatment plan but not necessarily part of a film plan. If we go back on lyme treatment (which I'm assuming we'll have to do), I don't know if we'll just do pulsing or if we'll also do some sort of film protocol. His risk of Pandas makes me feel like we can only do pulsing and be off abx during the summer/early fall. I don't want him off abx in the winter - he loses too much if he gets strep. And I can't keep asking him, year after year, to keep up with his peers with one arm tied behind his back. So if we do pulsing, I'll push for a different strategy during the winter months. So glad to hear about your progress!! Sounds like the tide is turning!

I think it depends on what's causing the flair. If infection and you're using an abx you've had success with in the past, then ibuprofen and alpha lipoic acid. But also consider yeast. DD was the devil incarnate this past week, just when she'd been good for months and I was thinking she might be permanently out of the woods. LLMD put her on an antifungal/antiyeast natural supplement (Byron White A-FNG) one drop/day plus garlic and probiotics, which we do all the time. Four days of h**l and motrin 2x/day. Alpha lipoic acid as an anti-oxidant. Then yesterday she came out of the tail spin and is almost back to herself (motrin 1x/day). You can also use resveratrol as a good anti-inflammatory (tho I found different brands work better than others). So consider whether symptoms fit Pandas or something else. When my kids get weirdly silly or super-short-tempered and irrational, yeast seems to be the culprit. When brain fog or muscle pain flairs, I suspect lyme. When OCD/separation anxiety are dominant, I think strep. Tho so many symptoms overlap, my kids' dominant symptoms can sometimes steer me in one direction vs. another.

I don't have any experience with the Lumbrokinase or related enzymes. I think MichaelTampa and some other lyme forum members do - so you might want to post there. You can also look into other things that are mucus thinners - NAC and even Mucinex can weaken a film and help abx get at more of the hiding bacteria. I'm not sure but I suspect you'd need to be on a film thinner, as well as abx, for a long period of time In case you don't come across in it your searching - here's the best article I've ever read on films - very long but very informative: http://bacteriality.com/2008/05/26/biofilm/ It might have more meaning now that your on this path. The other thing people sometimes do is to pulse abx rather than dose steadily every day. So you might go on one or more abx for 3 weeks, then go off for 3 weeks. This tricks the bacteria that might be hiding in a cyst or biofilm into thinking the coast is clear when there's no abx in the outer environment. So they emerge from hiding. Then you ambush them with a 3 week pulse of abx. The tough part with this strategy is that you're off abx for 3 weeks - a tough tightrope walk without a net for our Pans kids. But my LLMD says it works really well (tho the first 1-2 cycles can be really rough with die off/herxing). Today, my DS marks his 2nd week off all abx. If he starts to slip in the coming weeks, we'll likely pursue a pulsing strategy and/or a film strategy. It gets hard to figure out after awhile. I hope your family catches a break!

DS never felt anything with A-Bart. Took it for a few weeks, never saw any herx or improvement. So we moved on. I have nearly a full bottle if you want me to mail it to you. It's just sitting in that cabinet where you put stuff that didn't work but you paid too much money for it and can't bring yourself to toss. Yours if you want it.

Antibiotics won't treat viral infections. Juliafaith has lots of experience so definitely search her posts on the lyme forum. We used l-lysine - an amino acid available as an OTC supplement - to successfully beat EBV. You can search pubmed for research to find naturals that fight viral infections. Also do detox while fighting an infection to help with toxins from die-off, as well as supplements to help build glutathione - these steps can help with tics.

Very different presentations here too. DD has very bi-polar symptoms with rapid cycling. Her BP issues have been related to high copper, yeast and sometimes infection and the toxins from die-off. Treating MTHFR/methylation has helped a lot, as has tryptophan but having her on abx also helps. So treating PANS may not be her complete answer but it may be a part of it. I personally don't think anyone is just stuck living with BPD and a life of psych drugs. Feel free to PM me if you ever want to know the details of what we've done for DD. Dr L may not be the last doctor your DD needs to work with but I think it could be a valuable part of a treatment plan.

Tics can often be the result of the body not being able to get rid of toxins/garbage. My son was one a big ticcer. Pex and a T&A got rid of them for 1.5 yrs but then when we went thru an aggressive cyst-busting lyme treatment, the tics came back. We had to be less aggressive with abx and increase his detox regimen and then the tics resolved. Haven't been back since. We tend to want to go in and beat the cr*p out of whatever's making our kids sick. But sometimes the toxins from die-off are worse than the actual infection. Going slower might help. You can also search "detox" here and on the lyme forum and probably on the TS forum. Even if it doesn't resolve your problem, detox helps the body heal and is a good piece to put in place. It's been awhile since I worked with any of the doctors you mentioned (we've worked with an integrative osteopath for the past 2 yrs) but at the time, none of them addressed transsulfuration or detox. For my son, it was a big aspect of his improvements. IMO, tics are not something you're doomed to learn to live with. But sometimes slow and gentle can be as or more effective than big guns.

Bsimon3- a lot of literature on MTHFR focuses on homocysteine and the risks of heart disease, stroke, macular degeneration - or chronic fatigue and how undermethylation of B-12 effects energy levels. What I tend to focus on is the downstream effect undermethylation has on seratonin production and mood regulation, because that's the primary symptom we deal with in my DD7. What I mean my seratonin issues is mostly mood fluctation and anxiety/OCD. There's certainly a seasonal aspect to seratonin. There are several things that go into seratonin production - you need to monitor not just proper methylation but also nutritional intake. Vitamin D is also essential to many health functions, including seratonin synthesis. So it's not a simple thing to unravel. But from all I can gather, there can certainly be a seasonal aspect to seratonin synthesis. Lower D in the winter, less nutritional variety in the winter, changes in environmental allergens (certain molds/funguses/allegrens spike in the fall or winter, some spike in the spring or summer). Personally, DD seems to fall apart every January and mid-summer. So it seems that maybe two different things are at play. In January, I suspect infection (she certainly has a PANS reaction to getting sick), Vitamin D, less fruits. In summer, I'm suspecting outdoor molds and increased dairy/sugar (too much ice cream et al that maybe tips her into an allergy or yeast situation). Treating MTHFR has helped but hasn't been a cure-all. At the moment, I'm trying to confirm/treat a yeast infection that's suddenly taken DD from 100% to 65% in a matter of weeks. So treatment has turned to both killing the yeast and helping detox (using charcoal to soak up die off toxins) and oxidative stress (using alpha lipoic acid to help her produce more glutathione). But we're still in for a bumpy ride for the next few weeks. But at least I know we're taking the MTHFR piece out of the equation - and that should help not only now but also as she matures and other MTHFR health risks (miscarriages, heart, etc) become issues.

When my Pans/lyme DS wasn't "following the script" and improving on treatments that "should have" worked, we needed to dig deeper, to something more genetic/nutritional than infections. For him, we found pyroluria - a genetic zinc/B6 deficiency. When we started treating that, we were all dumbfounded at how he improved. The progress he made in a very short time was amazing - and it stuck. No regressions. From there, the lyme and Pandas that had kicked his butt became a much lower hurdle. For my DD, we ultimately found an MTHFR methylation issue and now a yeast issue. Treating the methylation gave her a nice period of "normal" and calm and joy. At the moment, she might be fighting some wicked yeast. We tend to think of yeast in terms of physical symptoms. But in our kids, it seems to look just like Pans and a neuropsych explosion. So my advice is to consider a genetic barrier or yeast or some other thing that's getting in the way of progress. As for doctors, the ones who spend more time with you trying to get to the bottom of things tend to not take insurance because insurance will only pay for drive-thru type service. It might be worthwhile to read up on some of these topics and see if any strike a chord. Then see if you can find someone in-network who could pursue some ideas with you. Perhaps your pedi would consider an rx of diflucan or nystatin for yeast at the very least?

She remains on 125mg zith daily as prophylactic. It's DS who's taking the abx holiday to see where we are in lyme treatment. He's 10 days w/o any abx and is ok so far. But too soon to declare victory. At least he's been in a good place while my 88yo dad is visiting. My dad has little patience for boys in general. Would be horrible to have DS in a flair. So counting my blessings and holding my breath. DD was better yesterday - not without issues but did a much better job catching herself and controlling her moods before she tipped over the edge. It's always something, eh?

We've touched on myco but LLMD hasn't pursued it. Prior to mid-June, DD was in a great place. Given her history of yeast/gut dysbiosis, GERD (which is active again after a year of calm), her high allergies to pollens and molds - and his seeing several other patients lately with similar symptoms who've responded to fungal treatments - the fungal is where he focused. We did do a blood draw and will check C3d, CBC, copper and other things. Will be doing a Great Plains OAT test once the test kit comes in. But for now, myco is a back burner thing while we see how the fungal treatment works. But I will keep it in mind if things don't resolve...