LNN

When H1N1 hit 3? yrs ago, my son got the flu and we gave him one dose of tamiflu. He developed this strange leg jerking and shakiness that seemed to fit the description of tardive dyskenesia and complained of something that sounded like vertigo. I didn't give him his next dose and the symptoms resolved within 24 hrs. He weathered the flu symptoms and was back to normal a few days later. I don't say this to discourage you. For us, it was a temporary reaction. So if your son's miserable and you want to try the tamiflu you'd probably be ok and you could always stop it. Just realize the tamiflu reduces the duration of the flu, it doesn't cure it. So if you wait too long, the body will probably be thru the worst of it and the tamiflu will be of limited value. Hope it's short-lived!

This is only my personal experience and personal opinion. I think there can be many reasons for tics and many things that can help reduce them. The owner of these forums, Shelia Rogers Demare, has published a book with lots of great anecdotes/ideas to try http://www.amazon.com/Natural-Treatments-Tics-Tourettes-Patient/dp/1556437471/ref=sr_1_1?ie=UTF8&qid=1351604011&sr=8-1&keywords=sheila+rogers My son was once a big ticcer. In hindsight, I think it was caused by his body/antibiotics killing bacteria. When certain bacteria die, they release toxins. If the body can't get rid of these toxins efficiently, it can cause many neurological issues - tics being one of them. I think this was my son's issue. His tics greatly subsided when he had a T&A (he likely had chronically infected tonsils or adenoids). We went 18 months tic-free and then they returned when we did an aggressive lyme treatment with tindamax. The tics went away when we stopped the tindamax after 5 weeks (it was just too much for his body to handle at once). With this in mind, we've focused a lot of helping the body's detox system (the transsulfuration pathway). He takes alpha lipoic acid and/or resveratrol to help his body make more glutathione - the main antioxidant for the body. He takes milk thistle to support his liver (abx and motrin are hard on the liver). He takes vitamin C, zinc and B6 to help the immune system and antioxidant system. He takes lecithin to strengthen his BBB. Tyrosine seems to be an especially important supplement for him - tyrosine is a precursor to dopamine, which seems to play a role in tics. So I think you can work with an integrative doctor to use various supplements that can help. You can do labs - blood and stool - to look for imbalances or problems with fungus, yeast, bad bacteria, metals... Since this seems to be your leaning anyway, I think this may be worth exploring. As for your appt with Dr K - here's my personal opinion. I think patients end up being self-selecting. Many of us see multiple doctors and end up staying with the one(s) who approach the problem in a way we're comfortable with. Dr X can say my protocol is to do "x, y and z and I have great success". I think that's partly because those who don't respond to "x, y and z" end up going elsewhere. Those whose guts tell them that "x, y and z" aren't right for them never even see dr X in the first place. Given your description of Dr K's protocol as scary, and your preference for a more natural/gentler approach, I think there are other doctors who may be a better fit for you. I have no experience with hands-on or chiropractic approaches, but it sounds like working with a doctor who supports the body would be a better fit than working with one whose approach is to suppress the body. You may also want to look into methylation as a research topic. It can play an important role in how the body is able to perform at its best. Good luck with your decisions!

There are a few things that strike me about your post. First - what treatment is suggested for the arachnoid cysts? What portion of the symptoms that you're seeing could be related to the cysts? This seems to be the most serious of your conditions and I'd want to know how the proposed treatments are expected to address the cysts. Second - I understand the trust you have in your doctors and how hard it's been to find someone to support you. I can see why you wouldn't want to question their suggestions. But this plan seems to be throwing a lot of things at the problem at once. If it's Pandas, taking a more methodical, one thing at a time approach is generally more helpful - 1. a 30-60 day course of antibiotics (omnicef/ceftin crosses the blood-brain barrier and given the cysts and possible previous menges infection, this might be a good one to consider) or a combo of antibiotics (one that works extra-cellular and one that works intracellular) and it might be wise to make one of them something that works well for H Pylori. *Note that if there's an active infection, antibiotics can initially give you a herxheimer response and make symptoms worse before better. It means it's working, not that you should discontinue 2. If you aren't treating the gut, I would urge you to do that for a month before you do any other treatment (aside from antibiotics). The damage the H Pylori may have done would've given you leaky gut, which would add to both nutritional deficits (which can cause neuropsych symptoms) as well as induce inflammation triggered behaviors. Some of these other treatments (IVIG) are hard on the body (if it's Pandas). You need to support the gut, eradicate any current infection and reduce inflammation as first steps. 3. Only after you did the above two for at least a month would I move to prednisone. I know some have seen immediate improvement from prednisone, but that's generally after treating an active infection, not before or during. 4. After giving anti-inflammatories a chance, then I think you'd be in a better position to evaluate the need for IVIG. When I first entered the Pandas world, I was all in favor of knocking the sh** out of whatever had stolen my child. But I've seen better results from a more methodical approach that includes a heavy dose of supporting the body first and then being aggressive once you've reinforced the foundation. It's a more frustrating approach in that you just want your child well NOW, but throwing the kitchen sink at him could give you a worse mess. Finally, with the cysts and H Pylori and sinus issues, I think it's really important to establish that this is Pandas/Pans. Other conditions can give you a similar set of symptoms (lyme related diseases, leaky gut issues, parasite or other bacterial infections beyond strep...). There's a neurologist in D.C. who treats Pandas and may be able to consult on your son's case and help your current team map out a game plan. One last thought - regardless of your next steps, I'd start adding probiotics to your son's day (taken a minimum of 2 hrs away from any antibiotics) and ibuprofen (motrin) taken 3x/day may also help with some of his symptoms that are inflammation-driven. it helps some of our kids immensely. Hang in there. You can get your son back. it just may take time.

FWIW, my LLMD continues to rely more on Igenex and clinical picture and has only used Advanced Labs a handful of times. In one case, it came back negative when he was all but certain the patient had lyme. We didn't discuss it at length but I gather that his objection is over the price and reliability. His view was that lyme doesn't stick around in the blood - it tends to colonize in soft tissues or films. So the "needle in a haystack" issue is there - possible to draw a vial of blood and have no lyme in that vial, plus it's double the cost of Igenex without giving him any higher assurance that a negative isn't really a positive truly is negative. He'd rather see patients put the money toward treatment. Now if the test were less expensive, he may feel differently. IDK. My personal opinion is that it may be a better test for someone who's gotten ill recently, like within the first few months. For those who are chronic, the accuracy may drop. If I were just starting out and had a cash reserve, I think I'd be tempted to do it. But if the cash situation was rough, I might go with Igenex and if there were IND bands, put trust in those. When the Advanced Labs test first came out, I was really excited. How can you argue with a picture of a spirochette from your own blood? That kind of reassurance that you knew you had lyme would be awesome. So if you have the cash, I could argue it was worth doing. I would just do it with the understanding that a negative might leave you in the limbo you're in now.

Yes, the flares do get harder because each time, you already have so much baggage - and it just piles up higher and higher. It's to the point where my DH and I "hear" a flare before we see it. Our voices take on a certain tone, we snap at things or behaviors that normally wouldn't bug us. Then we start watching for behaviors and sure enough, we'll realize "it's back." The only words of encouragement I can give is that once you're able to catch a break and get a few months of remission under your belt, patience returns. And weirdly, the kids don't seem to remember all the yelling. They seem to block a lot of it out - or maybe it never got recorded as a memory to begin with. One idea is to journal your feelings. Write to her to explain what's going on in your head. You can always delete it. But writing it might help you sift through your emotions in a safe way. All of them - including the negative ones - are legitimate and totally understandable.

I'm so sorry you're in such a low spot. It's such a tough call between not pushing too hard and not pushing hard enough. The addition of the abx might be triggering a herx. But still, you're entitled to some time to take care of yourself. In fact, taking care of yourself is actually taking care of Shae too, since she needs her mother more than she needs just about anything else! What would you/she do if tomorrow morning you needed to go to the hospital for a treatment and no one else could take care of her? Would you both manage to get her to school? To make it through a few hours? If the answer is yes, then you need to try to push for that. Because you DO need treatment - it's called friend/gym/life therapy - and it isn't a luxury. It's an necessity. You can't burn the candle at both ends forever. You need nourishment. You can't help your family from the middle of a nervous breakdown. Trust me on that one. Or from hospice either. I think it was DCmom who taught me the best response for when my kids were over anxious and trying to weasel out of going to school. Instead of reasoning with them, listing all the reasons their fears were exaggerated, trying to put a good spin on things - I now say "You'll handle it. No matter what happens, you'll handle it." They hate hearing this but it really takes the steam out of their arguments. By now, with kids in the swing of things, I'm sure its even harder for your daughter to imagine jumping in. But there's only one way to get over it and that's by going through it. I hope you both find a way through soon - you'll be in my thoughts.

Sorry - I forget where you're traveling from. But there's this woman http://www.lymefamilies.com/ who's very knowledgeable on lyme. Dr J probably knows her and might be able to ask for her suggestions that he could pass on to your pedi. Do you think he needs an antidepressant or an anti-anxiety med? Tyrosine can help with depression and 5-htp or tryptophan help with anxiety if you're interested in trying a supplement prior to going thru a taper up/taper down scenario on a medication. If you have hesitations about tapering off the adhd meds, listen to your gut. This medical stuff puts the kids' brains thru the wringer and they struggle so hard to keep up in school. If you think you have something on board that's helping, I personally think you'll know when it's time to taper, and it doesn't sound like you feel you're at the point. JMHO.

Augmentin is sometimes used for Lyme in conjunction with other abx. It depends on the individual and what sort of co-infection(s) are at work. Generally, you need one abx that works extra-cellularly and one that works intra-cellularly (a macrolide like zith) and sometimes a third abx that's a cyst-buster (like tindamax or flagyl). The extra-cellular abx are often rotated. My son has always responded well to augmentin and omnicef also made a big difference (omnicef aka ceftin crosses the BBB). It's possible that this clue means there is an infection component to your picture, that you just haven't hit on the right plan yet. It seems like doing a combo abx trial might be worthwhile. Fwiw - Dr B put my son on an augmentin+zith combo early in our treatment and it did nothing. It wasn't the right combo for my son. When we started with our LLMD, he added another abx and that made a big difference. So sometimes it's a matter of using the right combo, not just one particular combo. And over time, the "right" combo is only right for right now. You end up needing to rotate. One word of caution - my son was symptom-free at the start of the summer and had been good for several months. Sp per ILADS protocol, we stopped all abx to see if he could remain symptom free. Things crept back and by the end of the summer, he needed to re-start abx. It took about 2 months to get things back to baseline. So just be cautious about how long you do your trial. Sometimes getting that horse back in the barn can be tough.

Fixit - my DD gets more runny than snotty and NAC was horrible for her. But that was before we addressed methylation, so maybe that had a role in her poor response. It's so easy to get things tangled up until you don't know which end is up. I've tried so many things that have worked well for others but not for us. And vice versa. I can see where mucus would be a bad thing if you're dealing with biofilms. But reducing mucus would be bad if you're dealing with high stomach acidity. So that's why I really wanted to emphasize the need to zero in on things and not just address "gut issues". Kinda like a novice asking "how do you deal with mental illness?" and all of us would jump in and ask "what kind of mental illness?" because the way to address anxiety vs bipolar vs depression vs adhd vs ocd vs tics - all very different animals. I think the gut needs the same kind of distinctions. You can have allergies effect the eosinophils/esophagus, have a problem with the stomach valve not closing (GERD/dyspepsia), stomach irritation (ulcers/high or low acidity), problems with bile production (methylation/blockage/autoimmune), inflammation of the intestines, yeast, parasites, leaky gut, celiacs/allergies effecting the cillia, neurotransmitters effecting how often your bowels contract - and each issue could suggest different treatments. If I've made one mistake over the years, it's been in trying too many things at once and being impatient. If watching salycic is helping, my advice would be to change nothing else and only pursue the KPU treatment for the next 2 months. Only then would I reassess and go from there. JMHO

Absolutely in your corner. We did IVIG because I felt obligated to. How could I not give my kid every opportunity? Even tho I wasn't comfortable, I felt I owed it to my son to do "everything" possible. It was a bad experience for us. We were approved for a second one and I cancelled. It just wasn't the right treatment for us. Always trust your gut. FWIW - tindamax every day is quite an aggressive approach, IMO. My DS only did tindamax two days a week and by the 5th week, we had to stop. The herx was just overwhelming. 18 months later, we're gearing up to do it again. But when I start, I'm only going to to two doses on the first few weekends and then decide if we can increase it. Not every body can handle the stress and herx. Tindamax is heavy duty. It could be why nothing is touching the OCD. One thing you may want to ask your LLMD about is a possible pulsing schedule for the tindamax, or maybe taking a holiday. Sometimes when you stop, the body recovers and you realize there are great gains. It took about 12 days for my DS to settle down once we stopped the tindamax but then we enjoyed the best 5 months ever after that. So it could be that the tindamax is working "too" well and a holiday would be in order. If there really is a serious herx going on, adding the turmoil of IVIG on top of that would seem to be way too much. So if nothing else, I think you made the right decision to not have both going on at the same time. Just my opinion, but I'd have done the same thing.

My understanding is that Dr L refers patients to another dr for Lyme and that this doctor follows IDSA guidelines, which say chronic lyme doesn't exist. I'm not suggesting Dr L feels this way, but it hasn't been an area she's wanted to get into and unfortunately, the dr. she sent one of my friends to was not someone who was willing to consider long term lyme treatment. Per ILADS (the group that does advocate for long term Lyme treatment) - Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease! If you feel Lyme is worth investigating, there are lyme literate MDs (LLMDs) in the Maryland/DC area who would be better suited to help.

MTHFR is a gene that plays a role in many biological functions that rely on folate (vitamin B9). Your body takes in folate (dark green veggies, fortified cereals, multivitamins) and then converts it (methylates it) into a form that's needed (methylfolate) to keep certain body processes running smoothly. Your MTHFR gene influences your risk for heart disease, stroke, macular degeneration and certain cancers. But it also effects your body's ability to produce serotonin and dopamine. There are other genes that also play a role in this, but the MTHFR gene is well studied and easily tested, so there's been much discussion on this because we can actually do something about it pretty easily. It's low hanging fruit. You can have a hundred different mutations on this gene. But the two you can test for are called C677T or A1298C. Each mutation effects how well your body methylates at different parts of the cycle. As Nickelmamma points out, it's not the be all and end all answer for Pandas symptoms. But it can be an underlying condition that adds to the problem. My daughter does not have an official Pandas dx (my son does). She's always hovered in that in-between place where something is clearly not right, infection clearly makes things worse, but her issues seem independent of infection. Her issues weren't classic Pandas. She had bad thoughts about herself but no compulsions - not true OCD. Her rapid mood cycling was closer to bipolar than to Pandas. She would provoke fights and push every one of my buttons, deliberately trying to get me to lose it. Very oppositional and defiant. Would try to self harm or ask to be spanked because she "deserved" it. Very very upsetting. She tested with one mutation on her C677T allele. So to treat this, we eliminated her multivitamin that contained regular folate and now give her a small amount (200mcg) of methylfolate every other day. Initially, I was giving her too much methylfolate (800mcg every day). Initially, she got better but then it all got worse. Too much of a cure can give you the same effects as too little. Once the light bulb went off and we decreased the methylfolate, she's been very stable and steady. It's a very delicate balancing act, and her needs change - during an illness, she may need a little more, during the healthy summer months, she may need less. I do think testing for a chronic infection is also wise. My DD was treated for possible Lyme for 10 months and this did seem to help. But even when infection seemed to be taken care of, her "change on a dime" behaviors remained until we addressed MTHFR. So I think both are worth looking into. FWIW - both my kids used to see Dr B until Lyme came into our picture. They now see an osteopath LLMD who's been very helpful in exploring all these non-Pandas aspects with us (he also helps us with the Pandas). Let me know if you want his name. He'd be about 90 min closer to you but is also in CT.

What sort of gut issues are you trying to fix? Appetite? Food refusal? nausea? reflux? diarrhea? behaviors? yeast? do you suspect leaky gut? I see some talk about mucus thinning but I'm not sure I follow why this is a good thing for gut issues. Mucus protects the stomach and esophagus linings from stomach acid. So if you're dealing with excess acid, thinning mucus seems contradictory? Likewise, I'm all about mast cell control but that's based on my DDs tendency to struggle with histamines for a large part of the year. This seems to effect her gut. So things like quercetin, luteolin and rutin help DDs symptoms, including her nausea and GERD. Enhansa didn't make a dent because it didn't address the source of her inflammation (histamines). So it was probably like bailing water with a teaspoon. Pepcid helps but not as much as quercetin - for her. I think there can be numerous causes of "gut" issues, so you may need to zero in on more specific symptoms to know which path might help. In addition to the histamine angle and mucus angle, you may also look into things like ginger or licorice http://drholly.typepad.com/licorice/ This article explains that there can be both pros and cons to using something, depending on your specific situation. Tryptophan and calming supplements could also be something to explore. Both the brain and gut can benefit from the calming neurotransmitters like 5-htp, tryptophan, gaba, taurine. Theanine can also help for some people. So can diet. But it can be an expensive experiment unless you can narrow the causes/triggers.

My DD was very bipolarish before we zeroed in on the proper treatment for her MTHFR mutation. Have you check him for this?

PMd you

The sad news is nearly all of us have been in your shoes. Most likely, you will need to get on a plane or in a car to get to a specialist. You can call doctors locally, but many will assume you're doctor shopping and won't help. Some may say "come in", take your money and then lecture you on how Pandas isn't real. And the really sad part is that things are better now than a few years ago. The first thing you need to try to do is convince your pediatrician to prescribe at least a 30 day script of abx. For support, you can guide your doctor to this site from the International OCD Foundation - http://ocfoundation.org/PANDAS/ You can also show the doctor that Rogers Memorial in Wisconsin is beginning to treat Pandas http://www.prnewswire.com/news-releases/iocdf-conference-offers-rogers-memorial-hospital-a-springboard-for-future-collaborations-166460796.html (they are just getting their toes wet - not sure I'd rely on them for treatment guidance - they'd likely turn to Dr Jenike - but it would show your pedi that a major hospital recognizes pandas). The second thing you'll need to do is try to reduce the inflammation that's contributing to symptoms. Most of us use Motrin - every six hours for a few weeks straight. It won't take care of all the symptoms, but you should see a reduction in certain symptoms. It has to be motrin (ibuprofen) - Tylenol doesn't seem to work. Other things that will help to some degree are supplements that support the body's immune and anti-oxidation systems - zinc, B6, alpha lipoic acid, vitamin C, quercetin, lecithin or phosphatidylcholine (may help strengthen the blood/brain barrier). Not everyone uses supplements. But if you chose to try any of these, only add one thing at a time so you know what helps or what doesn't. In the meantime, you're probably going to need to get on the waiting list for an appt with a specialist - someone willing to put your son on prophylactic abx to prevent another episode. Each specialist has their preferences on how to treat Pandas. If you're going to have to travel regardless, you may want to research each doctor first. Under "helpful threads" at the top of the forum page, you'll find a thread called "doctors who have helped us". If you aren't able to get a longer dose of abx, you can go over to the lyme forum and ask about natural products that have anti-bacterial properties. Due to the length of time lyme patients need to be on abx, many turn to natural supplements, so you may find more info there than on this forum. Or you can do your own search. For therapy, CBT helped my family but that was because OCD was only a small part for my kids. Anxiety was a larger piece. But if OCD is big portion of symptoms, you'll need ERP therapy - from someone who has a lot of experience in ERP - to give your son tools. Therapy generally isn't that effective at the peak of a flare but is very helpful on the way back down. I know you're in a terrible, frantic place right now. But know that you will eventually get on top of this. Flares do end.

Here's an article from 2010 that may help. http://www.alsearsmd.com/activated-charcoal-detox-every-er-carries-this-miracle-powder/ This article supports using a lot of it. But from a practical standpoint, we always used much less. We don't use it regularly, but when we've used it for herxing, we usually used 5-6 pills @260mg.ea with a good amount of water(away from abx). Keep an eye on frequency and consistency of stools. Charcoal can be binding, tho we always found it to move things along. It may change the stool color to a greenish or dark color. Sorry if TMI but wanted to let you know that's normal.

I came across this site today - haven't done a ton of browsing, but pass it along as a resource in case you want to explore something and need a place to search for research BMC Complementary and Alternative Medicine is an open access, peer-reviewed journal that considers articles on interventions and resources that complement or replace conventional therapies, with a specific emphasis on research that explores the biological mechanisms of action, as well as their efficacy, safety, costs, patterns of use and/or implementation. It is journal policy to publish work deemed by peer reviewers to be a coherent and sound addition to scientific knowledge and to put less emphasis on interest levels, provided that the research constitutes a useful contribution to the field. http://www.biomedcentral.com/bmccomplementalternmed/

I came across this site today and wanted to share: The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns. We believe that disabilities, illness, and mental health issues affect the lives of all family members. Consequently, we want to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents' and providers' understanding of sibling issues. Our mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parents' and providers' awareness of siblings' unique, lifelong, and ever-changing concerns through workshops, websites, and written materials. http://www.siblingsupport.org/

I'm not weighing in on the Pandas issue - preaching to the choir, I suspect. But for those of you who've found success with methylation - read the WSJ article and tell me if this doesn't describe your kid?? OMG - this was my daughter. Do I want her to carry this label? No, not particularly. Do I want people looking into this proposed label to look at MTHFR? Absolutely. Here's a link to the Balanced Mind Foundation's position: http://www.thebalancedmind.org/connect/blog/2010/02/what-is-the-dsm-v-and-why-does-it-matter-to-you If this strikes a chord, consider contacting BMF with your thoughts on MTHFR and how treatment has helped your child. Here's a chance to give voice to methylB9 as a preferable treatment over bipolar meds.

The low phenol product has lower doses of main ingredients. You might want to email them to ask about how much of each active ingredient is in each product. I had it but cleaned up emails and accidentally deleted it. They've answered my emails w/in 24 hrs. Also fyi - I've stopped using this product for the moment. DDs complaints of body pain and fatigue have continued and she broke out with a cold sore in the corner of her mouth yesterday. So I started her on some l-lysine. I don't want to be introducing both at the same time. So I've paused the neuroprotek. Won't be able to give you any anecdotal experience for awhile.

Lots of moral support here too. But that hardly works as well as antibiotics. My Ds had been on combo abx for 20 months for lyme (single abx for a yr prior based on Pandas). We had finally gotten him symptom-free and 100%. So we taper off abx. Like you, symptoms started to return, tho not nearly as dramatic as you describe. We re-started abx and have regained lost ground. In a few weeks, we'll do some cyst busting with tindamax and then biofilms. Dreading it but know it has to be done. The stuff is not gone, just in hiding. I wish I knew what to tell you. I suppose your options depend on your ability to travel to the US or not. From the sounds of it, you're not likely to find a supportive doctor locally. If you do need to manage on your own and use naturals, Stephen Buhner has written extensively about his protocol using only herbals http://www.gaianstudies.org/Lyme.html and http://buhnerhealinglyme.com/ On the first link, he also lists two doctors in VT who might be able to help. One is in Brattleboro, just south of the border. My bias is that using only herbs will take longer but I know Ann Corson, a widely respected LLMD pediatrician, does not use abx in her practice. So it can obviously be done. As for lyme vs. Pandas treatments - despite the 2 yrs battling lyme and treating for pyroluria (which was amazing for son but did little for daughter) and treating methylation (not an issue for son but amazing for daughter), my son still flares from bacterial infections and we need to add amox or augmentin to get the horse back in the barn. (these are not part of his daily regimen. zith is but for him, it doesn't get the job done for Pandas). The Pandas beast is far easier to tame now (flares far milder) but if you think you can get a Pandas friendly doc on board to give you some abx for strep issues, then maybe that would be a good parallel plan in addition to pursuing an herbal lyme protocol. I'm sorry you're in this quagmire where politics and bias supersede patient health. Maybe take an old sock and make a voodoo doll of your doctor. Buy yourself some nice hat pins. Won't score you abx but might make you feel a little better...

Alpha lipoic acid is a pre-cursor to glutathione - would that be a possibility? We use this one from source naturals but lower in the search results I see a cream... http://www.amazon.com/s/ref=nb_sb_ss_i_0_18?url=search-alias%3Daps&field-keywords=source+naturals+alpha+lipoic+acid&sprefix=source+naturals+al%2Caps%2C180 (fwiw - DD is allergic to ragweed and also has allergic issues to other herbs like andrographis and oregano - but has no issues with milk thistle - go figure).

We use it more as an antihistamine/mast cell regulator than for inflammation caused by cytokines. That said, DDs irritability and moods are largely driven by histamine and methylation issues, not infection. So quercetin does help regulate her by making her feel better in general. My newest money-sucking trial is this product NeuroProtek - they also make a low phenol product (which is what I was asking you about a few weeks ago). It has both quercetin and luteolin, which I've always wanted to try. So far, DDs only taken 4 pills so I can't say if it's any better or worse than the much cheaper Quercetin/Bromelein we usually buy from NOW Foods. Head's up - there's an enzyme G6PD which people of Mediterranean heritage, including Italians, Greeks, Arabs, and Sephardic Jews as well as african-americans tend to lack - especially males. This is good if you're in a malaria prone area but bad if you're consuming fava beans - most quercetin is made from fava beans. If you lack this enzyme and use regular quercetin, you run the risk of developing a type of anemia. (I swear I collect way too much medical trivia - but this one caught my eye b/c DD is 50% Greek). NeuroProtek claims this isn't a problem with their product because their quercetin comes from a non-fava source (the researcher - a mast cell expert at Tufts- is Greek, so this was on his radar). I'm so sorry she's flaring. Here if you need a shoulder...

Lisa - you've been given some really wise advise here and I think your plan makes a lot of sense. I personally relate to the approach taken by many LLMDs - looking at a whole range of issues - beyond lyme. So if you do find yourself considering another doctor, I think you might like working with an LLMD even if Lyme isn't your smoking gun. But whether it's a new doctor or Dr B at your next visit, one series of labs I found helpful was Shoemaker's list of bloodwork to check inflammation markers. http://www.survivingmold.com/diagnosis/lab-tests Shoemaker's focus is on mold. But these labs show how the body is handling inflammation. It doesn't necessarily mean you have to gut your house and spend your last penny on mold remediation. Especially if you find only some markers are high and not others. What it would give you is another way to look at a medical picture. If you found that your son had elevated markers, you'd know there was a medical/inflammatory trigger rather than OCD/ADHD caused by some other factor(s). Mold was a small contributing factor in my house but not a major one. But the labs helped us understand what things might help control symptoms. I'm so sorry you're still in this place. But I'm really glad to hear that you're finding things that are helping -that's what matters most. I especially love hearing ERP successes. I hope his progress continues and I continue to keep you guys in my thoughts.