LNN

We're doing half-day homebound right now for DD. Our letter was less specific and still qualified her for a 504. In your case, I'd push for an IEP, unless you think your DD can complete all the assignments. Even at home, there may be times she isn't up to a full work load. I hope they work with you. We too feel the push to get DD back to school and I get that patronizing lecture about needing to "encourage" her because the social value of school is so essential. First - I hate to be pushed. Second - I am not deliberately denying my social butterfly time with her friends. Stop talking to me like I'm somehow loving being a recluse, unable to get any work done or buy milk without having to plan a full scale effort. Drives me nuts. Fingers crossed for the scopes (and the day before prep!).

Hang in there Suzan. I like Philamom's advice on talking to your practitioner about options. Wimps can get to the finish line too - not just Clint Eastwood types...You have three people counting on you. Take it easy on yourself so that you don't crash and burn. And know you can always turn to us for hankies and hugs. We're here for you.

Michael's right- having one mutation reduces your abilities by xx% and having two mutations reduces it even further. But it doesn't necessarily mean you can't convert any folate. I went back to edit my previous post - I had originally said it prevents your body from converting when the correct word is impairs. (good to have other people chiming in - thanks Michael). How much you need is probably dependent on both your diet and your physical needs. If you eat tons of healthy foods and are in good health, you may not need any methylfolate supplement because even at 40% efficiency, you may still be able to meet your body's needs. But if you get sick, or you don't have a healthy diet to begin with, or if you have methylation blocks elsewhere that compound one inefficiency on top of another, supplementing may be a big help. And it probably depends on age as well. I guess one way to get a picture is to measure plasma homocysteine. We've never measured that one. Don't you wish we didn't have to figure this out?

LSS- if your son is low in homocysteine, who suggested the methylguard and why? I would think methylguard would be only for people who are having trouble either with energy or with high homocysteine, not low homocysteine. Or if you had a mutation on the MTHFR gene... TPotter, methylfolate is the thing you need to add. B12 is also important, especially if you already know you're low. But as far the the MTHFR gene - it only tells you that the C677 mutation is impairing your body's ability to convert folate into methylfolate. It has nothing to do with how your body is or isn't using B12. This is a really good overview of the issue: http://www.lef.org/protocols/heart_circulatory/homocysteine_reduction_01.htm I recommend reading the whole thing - it gives a good explanation of the role elevated homocysteine plays in heart disease etc. But the answer to your specific question is here: The MTHFR C677T gene polymorphism is the single most important genetic determinant of blood homocysteine values in the general population. More than 40% of Hispanics and between 30-38% of whites living in the U.S. inherit at least one copy of this gene (Botto 2000),which impairs their ability to fully activate (methylate) folic acid to 5-methyltetrahydrofolate, the bioactive form of the B vitamin. Individuals who inherit this gene variant from both parents have a significantly higher (14-21%) risk of vascular disease than those who do not. For this affected group, taking the bioactive folate supplement, 5-MTHF, may be a better strategy. 5-MTHF is clinically tested, is highly bioavailable (Willems 2004), can cross the blood-brain-barrier (Weir 1999), and is unlikely to mask a vitamin B12 deficiency as folic acid can do (Venn 2002). Those who carry this gene variant can safely reduce their risk of homocysteine-related health problems using an inexpensive, nonprescription natural folate supplement. As I understand it, homocysteine can be broken down in one of two ways - it can be recycled back into the methylation cycle with methylfolate + B12 (called re-methylation) or it can be transformed (with B6 and CBS) into glutathione, which is the King of all anti-oxidants (this second transformation of bad homocysteine into something good is part of the trans-sulfuration cycle and is critical for detox). So there are three possible things that can happen to homocysteine. 1. It can be remethylated via methylfolate + B12 (methylcobalmin) 2. It can be transformed into glutathione via CBS + B6 or 3. It can accumulate and remain unconverted (due to clogs in either 1 and/or 2) and elevate your risks of heart disease, stroke, etc. Note - if you have KPU, you have a genetic obstacle in keeping enough B6 in your body (too many pyroles will bind to your zinc and B6 and cause you to pee it out before it gets used as part of trans-sulfuration), resulting in less glutathione, reduced detox ability and more damage from oxidative stress. So it's technically not all "methylation" but it's all related. It's not a matter of just adding more of one thing. It's finding balance and making sure all the cycles and chain reactions have sufficient raw materials in bioavailable forms. Tpotter - you mention you guys are still sick frequently. I'd ask your doctor about zinc and certainly pursue the KPU aspect. Zinc is the ammunition of the immune system - the bullets. Plus, when your body is diverting resources to fight a chronic infection, it may not have adequate raw materials to fuel the other processes that go on in the body. There are other essential vitamins, minerals and amino acids that come into play (e.g. Vitamin C etc) and inflammation to consider as well. There's a lot I don't understand about all of this and I'd certainly defer to your doctor's advice on what to take. It's a bit of trial and error and finding balance. And just when you get it right, something will change.

Not sure where you read it's rare. From everything I've read, the C677 mutation is one of the most common mutations of this gene. The most well-studied polymorphism related to the risk of neural tube defects changes a single DNA building block (nucleotide) in the MTHFR gene. Specifically, it replaces the nucleotide cytosine with the nucleotide thymine at position 677 (written as 677C>T). This variant, which is relatively common in many populations worldwide, produces a form of methylenetetrahydrofolate reductase that has reduced activity at higher temperatures (thermolabile). People with the thermolabile form of the enzyme have increased levels of homocysteine in their blood. http://ghr.nlm.nih.gov/gene/MTHFR I doubt it has any relevance in the Pandas community vs any other community. It's not a "cause". However, it can play a role in the body's reduced ability to make seratonin and/or dopamine because it interferes with efficient methylation. In that respect, it may be one of those predisposing factors to the neuropsych symptoms. it also plays a big role in increasing your risks for heart disease, strokes and macular degeneration. The treatment is to take methylfolate. Thorne sells it and at least one other company. We buy it here: http://www.amazon.com/Thorne-Research-5-MTHF-5-Methyltetrahydrofolate-60s/dp/B001PLESO2/ref=sr_1_1?ie=UTF8&qid=1328620665&sr=8-1 lfran - you can get the test from any commercial lab - quest, labcorp, etc. Covered by insurance. Our cost was $50, but we'd met our deductible, so $10 out of pocket. The name is MTHFR. This is Quest's test http://www.questdiagnostics.com/hcp/testmenu/jsp/showTestMenu.jsp?fn=36165.html&labCode=NEL

Not familiar with Bonnie Grimaldi. But we use niacinamide. Can't say I see the same impact as a motrin. It's one of those "good to have" things in our mix of supplements. But I don't consider it as one of our "must haves." That said, I'm learning more and more about orthomolecular medicine and run across it quite a lot. Apparently Walsh - a big name in methylation - is working on a new book (not yet available). Hoping it will help my connect some dots and wouldn't be surprised to see B3 mentioned quite a bit.

My DD has struggled with EBV for the past several months. Has only been able to attend school half days, 504, school-paid tutor at house 1 hr/day. 7 weeks ago, she also developed a chronic dry cough and fatigue got noticeably worse. So maybe a combo of infections? Saw our integrative (LLMD but like Wendy's - someone who treats a broad spectrum) two days ago. Ran thru a range of options. We decided to try l-lysine: It is crucial for the proper absorption of calcium from the gastrointestinal tract. It also helps in conserving calcium. It facilitates the production of enzymes, hormones and antibodies and assists in the formation of muscle protein. Lysine aids in the synthesis of collagen, an important constituent of bones and connective tissues. Besides this, L-lysine benefits involve stimulating the production of creatinine, which is responsible for converting fatty acids into energy....Lysine is often used in treating herpes viral infections, especially those caused by herpes simplex virus. It has been observed that lysine is effective in accelerating the process of recovery and reducing the frequency of both cold sores and genital herpes.... Certain forms of lysine are also believed to have anti-inflammatory properties,...A deficiency of lysine can lead to the formation of kidney stones and other health problems such as nausea, dizziness, loss of appetite, fatigue, anemia and disorders associated with the reproductive system. A low-level of lysine can also lead to a low-level of the thyroid hormone, asthma and prolonged viral infections. As it is a vital amino acid, its deficiency can inhibit the normal rate of growth and development.http://www.buzzle.com/articles/benefits-and-side-effects-of-l-lysine.html and from wiki... L-Lysine is a necessary building block for all protein in the body. L-Lysine plays a major role in calcium absorption; building muscle protein; recovering from surgery or sports injuries; and the body's production of hormones, enzymes, and antibodies.... Lysine has a known anxiolytic action through its effects on serotonin receptors in the intestinal tract. One study on rats[32] showed that overstimulation of the 5-HT4 receptors in the gut are associated with anxiety-induced intestinal pathology. Lysine, acting as a serotonin antagonist and therefore reducing the overactivity of these receptors, reduced signs of anxiety and anxiety-induced diarrhea in the sample population. Another study showed that lysine deficiency leads to a pathological increase in serotonin in the amygdala, a brain structure that is involved in emotional regulation and the stress response.[33] Human studies have also shown negative correlations between reduced lysine intake and anxiety. Note that Wiki says l-lysine is a seratonin antagonist, but since this girl has no psych symptoms, should be ok. Not clear to me how it can be good for anxiety yet be a seratonin antagonist. I'm missing something. Anyway, we started DD on it on Thursday night. She is noticeably better these past two days. I was coming down with a virus and other naturopathic remedies weren't cutting it. I started the l-lysine and also started to feel better. The doctor said if it was going to work, it would work quickly. It may not be the answer for your friend, but for $0.10/pill, and no real side effects, especially short term, it could be a quick experiment.

As part of heme (blood) synthesis, pyroles are produced as a byproduct. Pyroles bind to zinc and B6. Because pyroles are in a sense a waste product, they're excreted in the urine. When you make too many pyroles, they bind to your supply of zinc and B6 and you end up peeing away not only the pyroles but also your zinc and B6. You can do a blood test and see normal levels of zinc/B6 but it gets stuck to the pyroles and excreted b4 the body can utilize it. The way you diagnose pyroluria is by looking for pyroles in the urine (it turns the test material a shade of mauve, so it's also called "mauve factor" and was once thought to play a role in schizophrenia. My analogy is the guy in the big glass ball full of money. There can be tons of money. Should be more than enough to make him a millionaire. But turn a fan on and the guy can't catch the money flying around inside the ball. So you can do a blood test and see plenty of zinc. But if it's not easy to utilize, you end up with a deficiency and being "poor". To treat pyroluria, you mega-supplement with B6 and zinc, which for that particular body, ends up being "just enough". For those who have a zinc deficiency measured in a blood test, you would still supplement. But it may or may not be caused by pyroluria. They could be two different issues or the same issue. And I'm not sure how B6 would come into play in a regular plasma deficiency of zinc. The Klinghardt paper does a good job of explaining.

The one who talks about pyroluria a lot is Klinghardt - an LLMD. He says there's really only one good lab for it - http://vitamindiagnostics.com/ Go to the Lab Tests tab then Specific Tests then Kryptopyrrol in urine for info. You can also print out the order form from the site. It's $70 which includes fedex costs, not covered by insurance. But you do need a physician to sign the form. If you decide to pursue, let me know and I'll email you a copy of the completed order form so you know what to check off and I'll email you Klinghardt's specimen collection instructions, which are different that the standard instructions from the lab (the lab says do a 6 hr catch, Klinghardt tells you to do a 24 hr catch b/c the level of pyroles can fluctuate throughout the day). If you can't get the test done, the other option some people have done is to just do a trial of zinc/B6. You'd see some sort of improvement within 2 weeks? We saw a change within a few days for my son, who was absolutely positive for KPU. Never saw much of a change for my daughter, who was borderline. Klinghardt developed a blend of zinc/B6 and other stuff so you only have to take one pill and not a dozen separate ones. It's called CORE from Biopure. If you want more info on Core, let me know. You start with one pill, then build up to full dose of 4 over a few months. If you have KPU, you usually see a blip @ weeks 3-6 as your body's conveyor belt starts working again and it starts cleaning out crap/detoxing, fighting stuff it wasn't strong enough to fight before. Here's an old article written b4 Core was developed but it gives background. http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf KPU can only be detected from a urine test, not a blood test. For my son, it's likely a lifelong condition. If you already know you have a zinc deficiency, you can read up on supplementing w/o doing a KPU test. They may be different conditions. FWIW, high copper can cause mood swings and rages. My DD has tested for high copper and struggled with this. Zinc supplementation will naturally chelate copper and cause it to drop. But like any chelation, you may see blips of behaviors, much like the struggles that happen with most "detox" sorts of situations. I would still keep an eye on the 3 week cycles. That may be unrelated to any zinc or pyroluria issues. Heaven forbid there should be only one thing wrong.

I have been in your shoes. The response, the improvement where you start to feel "ok, it's working, he's coming back..." only to be hit by a train when he suddenly tanks again. If you are truly re-reading ancient history, you'll see me blame "exposure" many times. I can only tell you what ended up being true for us. My son wasn't reacting to new exposures. He was reacting to a current infection that was never defeated. For him, it was bartonella/lyme. Bartonella produces a lot of neuropsych symptoms that overlap a lot with Pandas. My son absolutely had Pandas responses to strep. So that was part of it. But he never got to enjoy long periods of remission the way some other Pandas kids did. After doing Pex and IVIG over the course of 2 yrs, we finally tried lyme treatment. He had a great initial response to combo abx for bartonella - a 4 month improvement that was longer than we'd ever had. But then we hit that friggin wall again. So we hit the lyme harder and my son got just like your son. Raging, huge tics (hadn't had tics for 18 months post-pex), huge anxiety, zero impulse control, fixated on an idea, just a mess. It turns out that he had basic problems with his immune and detox systems. He has a condition known as pyroluria - a zinc/B6 deficiency that kept his immune system (and his brain) from working well. The explosion of symptoms from hitting the lyme hard was due to his inability to get rid of toxins quickly enough. He was sort of poisoned from the dying bacteria and that caused the neurological problems. We finally started treating the pyroluria and the change was huge. I mean huge. It repaired the foundation. From there, his body started detoxing better (not without blips but he got there). Then we started added some other missing nutrients (magnesium, primrose oil, etc). He was really good so I added flaxseed oil (omega 3) and he totally tanked. For him, Omega 3s are terrible. So you have to find individual answers. What works for others may not work for you. He's still on combo abx and he's not completely done with treatment, but he's in the best place of his life. Better than before everything fell apart. Not suggesting any particular issue for your son. Only that you may need to look beyond strep, for something that seems to have a 3 week life cycle. You may want to look into pyroluria or some foundation building blocks. The things that have been key for my son haven't been the solution for my daughter. So every body is different. We still need to find my DDs missing ingredients. But now I know we'll get there as long as we keep looking. She's been fighting EBV for months. Two days ago, we added l-lysine, which is anti-viral. The change has been remarkable. Again, she may have other things to deal with. But my point is that when you find one of the puzzle pieces, you tend to know it pretty quickly. At least, that's been true for my kids. So if your son isn't following the script, keep looking. There's no one size fits all solution. But there is a one size fits perfectly solution for your son - and you will find it. Just keep digging.

I updated on the lyme forum, since you guys were helping me brainstorm. Don't want to hijack this thread. One of the things we're adding is l-lysine for anti-viral and it has some GI-calming effects. So I immediately thought of your DD. Will email you some details.

I'm glad you have a plan you sound comfortable with. I hope it bears fruit! What is the ADH for? (I ask b/c DS9 continues to struggle with enuresis despite many many improvements in all other areas and it's really ticking him off). We too had out LLMD appt yesterday for DD7 - the one with the EBV. Doesn't look like the artemisinin has done anything. Will finish our last two 5-day courses and then be done. We brainstormed several ideas and then we both, at nearly the same time, suggested l-lysine. Considering it kismit, that's what we're trying now. DD also has a dry cough - has had it for 6-7 weeks. So it's possible there's also a myco infection adding to the fatigue. So LLMD added 250mg zith. In two weeks, we may add bactrim depending on where we're at. Gave the first dose of each last night. This morning, she still said she felt bad but her voice was stronger. She made it through her half day of school (couldn't get to school at all yesterday or Monday). And she's with the school tutor now with more energy in her voice (I am actually listening to the tutor be blown away by how immensely better DDs handwriting is today - those of you with that Pandas background can understand how giddy it makes you to listen to a stranger validate a symptom improvement). So I'm yelling at myself to not get too excited - but after so many months of seeing her "muted" it's just so good to see glimpses. Last week, DS came down with a bad cold. He shared and early in the week, I started to feel run down too. Started popping andrographis, but it felt like I was losing the battle. So I took some l-lysine last night and this morning too and I feel way better. Realize not every cold or virus will respond to the l-lysine, but this one seems to be. So since it made me feel better, I guess that tempts me to think it's helping DD too. LLMD said if the l-lysine was going to help, it would work quickly. Hope I'm not deluding myself. But it's nice to feel optimistic after such a long stretch. Julia - sorry to hijack. I hope you get to see lots of improvements quickly. Sounds like it holds much promise!

Here are some links that might help. b. http://www.nutritionj.com/content/7/1/2 c. http://www.naturaladd.com/resources/articles/natural.html d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html e. http://findarticles.com/p/articles/mi_m0ISW/is_255/ai_n6211958/ f. http://www.ihealthtree.com/inositol-powder-8-oz-source-naturals.html I think the treatment dose for adults was between 12-18 grams/day for full-blown OCD. Lower for general anxiety. Titer up your dose every 4-5 days to avoid gas and discomfort and to give yourself time to see if you like the result of that particular dose. We use the Source Naturals powder because you can tweak dose easier than you can with a 600mg capsule. But for someone your son's size, either would probably work. The powder is virtually tasteless - like powdered sugar. (Good for anxious moms too). My son, when he was 50 lbs and in full Pandas glory, needed 5 grams/day. (he hasn't used it in about 2 yrs). My daughter, 45 lbs, is on 2.4 grams/day. She got mean when we tried a higher dose. So I don't know if weight is as important as response when deciding where your sweet spot is. Nancy Fxcfer posted that if you go too high, you might see bi-polarish swings, and if so, back down. That's what we saw with DD and why we stayed at 2.4 grams, which is pretty low. It initially did wonders for DD. It was so cool to see her anxiety-free. It's less effective now, but she's also dealing with some butt-kicking fatigue - unable to go to school full time - due to some virus or possibly mycop. It's causing a bump in her anxiety, but still more manageable than before. We met with our integrative yesterday and will be trying some new things for that. So it's possible that whatever is currently going on has lessened the effectiveness of the inositol. One option would be to up her dose. But I want to keep everything the same so I can measure how effective our new experiments work. I don't have experience with 5Htp but it is on my list of things to consider, along with SAMe. I think they all have something to offer. Just can't suggest any dosing info on those.

You can try http://www.lymenet.org/. There's a forum section and a separate section where people can ask for doctor referrals. I personally don't go there very often, because the topics don't seem to get discussed as thoroughly as they do here and also because it's adult oriented. But it's one option for adults. You might also go to google books and look for books on lyme (Healing Lyme is one that comes to mind). Sometimes when you read about symptoms, you recognize yourself. Cure Unknown is also a great book if she's a reader.

Thought those of you "obsessed" with LeRoy (and I say that with a smile) would enjoy this article http://www.scientificamerican.com/article.cfm?id=could-infection-cause-tourettes-like-symptoms-teenage-girls Could an Infection Cause Tourette's-Like Symptoms in Teenage Girls? The sudden onset of a tic disorder in 15 upstate New York teens might be the result of a strep or other microbial contagion, not "conversion disorder"

I don't have any personal MRI experience, but wanted to offer my support. I had a thyroid cyst a few years ago - turned out benign but the weeks waiting for biopsy results were gut wrenching. I do hope the results for your son are benign. Remind yourself that knowledge is power and regardless of the outcome, you will be better equipped to get him well. You can move mountains. You're in my thoughts.

I would also chart her symptoms. Lyme has a life cycle of 4 weeks. Other co-infections have different life cycles (don't know what it is for erlichiosis). I would often see blips of behaviors somewhere between the 12th and 16th of the month, despite their being on combo abx. It can get complicated. So keeping a chart, with notes (e.g. 1/31 -brother had fever) can help. If you need a sample, PM me with your email address. Agree with DC Mom - try not to panic. Be aware, give NSAIDs, take good notes, but try not to let it rule your life. (yes, I am being a hypocrite when I say this).

Take pictures of the rash if you can. Some infections cause a die-off that presents as a rash. My DD is genuinely allergic to the cillins (penicillin, amoxicillin, augmentin) and at least some of the close relatives - the cephalosporins (omnicef). She was on omnicef for 8 days in Oct and broke out head to toe in very itchy hives. But she has also broken out in rashes that were not hives or allergies - but rather from die off. So pictures are a good tool. Also, allergic reactions respond to antihistamines. So that may be worth a trial. As for the DO - if it's who I think it is, ask to be put on a waiting list. If you can be flexible, you can probably get in much sooner by taking the next available appt. I would also call every few weeks to check in and stay on their radar. Not to be a pest, but to keep your name out front. IMO, he is worth the effort. And he is extremely willing to treat without abx (but also uses them if that's what you agree is best). Can't advise you on restarting the abx. I would, but you should follow your instincts. If the bellies were still upset a few days after abx, then I'm not sure it's the abx causing it. Lots of probiotics options out there - depends on if your kids can swallow pills. if not, Vitamin Shoppe sells a berry flavored liquid probiotic - we'd add it to Splash Juice and it blended right in. They also sell a strawberry flavored one I'd mix in strawberry milk or a milk shake. if they can swallow pills or if you can open a pill and get it into them without them detecting the grit, Sacc Boulardis is good - it survives against abx. Or do a combo of Sac B and Theralac or Truflora or Florastar. We shoot for 30 billion CFUs but others use much more. It depends on budget and on how easily you can get the stuff into small bodies. Probiotics in general work best 2 hrs away from abx and if practical, close to bedtime when the stomach is going to be resting. Stomach acid will kill more of the probiotics. So don't give with a meal unless that's your only option. You might also want to look into l-lysine as a supplement or increasing foods high in l-lysine. From Wikipedia Lysine has a known anxiolytic action through its effects on serotonin receptors in the intestinal tract. One study on rats[32] showed that overstimulation of the 5-HT4 receptors in the gut are associated with anxiety-induced intestinal pathology. Lysine, acting as a serotonin antagonist and therefore reducing the overactivity of these receptors, reduced signs of anxiety and anxiety-induced diarrhea in the sample population. Another study showed that lysine deficiency leads to a pathological increase in serotonin in the amygdala, a brain structure that is involved in emotional regulation and the stress response.[33] Human studies have also shown negative correlations between reduced lysine intake and anxiety. A population-based study in Syria included 93 families whose diet is primarily grain-based and therefore likely to be deficient in lysine. Fortification of grains with lysine was shown to reduce markers of anxiety, including cortisol levels, and also led to potentiation of benzodiazepine receptors (common targets of anxiolytic drugs such as Xanax and Ativan).[34] There are lysine conjugates that show promise in the treatment of cancer, by causing cancerous cells to destroy themselves when the drug is combined with the use of phototherapy, while leaving non-cancerous cells unharmed.[35] While chemically insignificant to lysine itself, it is worth noting that lysine is attached to dextroamphetamine to form the prodrug lisdexamfetamine (Vyvanse). In the gastrointestinal tract, the lysine molecule is cleaved from the dextroamphetamine, thereby making oral administration necessary. According to animal studies, lysine deficiency causes immunodeficiency.[36] One cause of relative lysine deficiency is cystinuria, where there is impaired hepatic resorption of basic, or positively charged amino acids, including lysine. The accompanying urinary cysteine results because the same deficient amino acid transporter is normally present in the kidney as well. As for risk of abx-resistance - IMO, it's real and a valid issue. But 80% of the antibiotics used in the US are given to livestock. Resistance is a big issue in nursing homes and hospitals. But I would not be swayed from treating my kids with something that had clear benefits. It is a balance to be sure. But I wouldn't let it keep me from using them if they're needed. You can also rotate abx every few months as an option. Herbal supplements with anti-bacterial properties are also out there, but may be harder to use with young children due to taste and would best be used under the guidance of someone who has experience with them.

I'm sorry you're in this place. I understand how frightening it can be. It does sound like you have good reason to suspect infections and to see someone who will not think you're crazy for wanting to go down this road. It can be hard to know what to do first, with so many things on your plate. But it sounds like the first order of business is to get yourself checked out and on a treatment plan. You can't be the best caregiver if you're sick. You can ask your PCP to run a bartonella antibody test. Specialty Labs, a subsidiary of Quest, has a decent test. But be sure to request that they run it thru Specialty Labs and not one of their other labs. You can also ask for a standard Western Blot lyme test - you may not get a clear result, but if you do, it will save you the expense of having to do additional testing. I think you can start with your PCP for this, but eventually you're going to need a lyme specialist if you decide to pursue treatment. Most LLMDs (lyme literate MDs) have waiting lists of several months (tho you can get on a waiting list and sometimes get in within a few weeks). I'd make an appt with an LLMD while you wait for lab results, so you don't lose additional time. Once you have some idea of how you're going to treat yourself, you can see if the LLMD you chose treats kids as well. It's a complicated ball of string and there's no cliff notes version. Each of our kids seems to have unique twists. Given your kids histories of frequent infections, it's possible they have a zinc deficiency (you can google pyroluria or kryptopyroluria or mauve factor for info). So I'd probably look for an LLMD who's more of an integrative doctor - someone who will consider less traditional labels and more comprehensive treatments. That was key for my son. I know you just want someone to tell you what to do, or grab one book that will explain it all so your head can stop spinning. But no such book exists and if it did, I think it would be too much to take in all at once anyway. It's a peeling onion thing. Start with yourself and see where the trail leads. But be encouraged by the fact that there are treatments that can help your kids and yourself and your research skills have already taken you farther than many people. You will get your own health and your kids' health back - it will just take time.

S- the l-lysine looks intriguing - TQ! Costco puts the Valtrex @ $228 for (30) 500mg pills - (our $6500 deductible means we pay oop for many months- I know you feel my pain). The generic pill is only $80 but it's for the 1 gram dose. Anyone know if the pill can be split w/o losing effectiveness? Have never done thyroid panel but it - and adrenals - are on the list for doc on Thurs. along with new EBV & CBV titers so we can see which direction the titers are moving. Also going to ask about the resveratrol, ATP, anemia...going to be a jam packed 45 min visit. The ATP and l-lysine are in line with my gut - find the basic, underlying "system" issue - the block(s) that are keeping her body from dealing with the EBV/CMV the way her peers do (50% of 5 yr olds have had EBV, 95% of adults have had it - why is it kicking HER butt and no one else's? That's the root issue I want to find and treat). Thank you ALL for your support and ideas. It means a LOT!

Can you tell me about the querciplex? I am chasing my tail on this virus thing. DH made the mistake of asking me where we were at with things and it was like popping a zit - I just burst out a mile a minute on all the thinking and researching I'm doing and how circular it felt and... and then I watched his eyes glaze over. I know we have a virus issue. Fatigue and anxiety are huge. I know something was there before the virus. I know lots of data points. But I have yet to find an underlying puzzle piece that ties it all together. With DS, it turned out the pyroluria was that cornerstone thing. Fix that and everything else fell into place and is now responding so much better. I am on the hunt for that same cornerstone for DD and am beyond frustrated that it isn't any of the things we looked at for DS. I come back to histamine and methylation. In the past 3 months, DD has had allergic reactions to omnicef (not surprising - she is allergic to amox, as is DH) but also oregano capsules and andrographis. Beuhner says only 1% of the popultation is allergic to andrographis. Her behaviors can be very agitated and swing rapidly. Ever have a cat who rubs against your leg looking to be pet then twitches its tail when you reach down. So you stop and it walks away and then suddenly from across the room it comes and shreds your leg for no apparent reason? That's dinnertime with DD lately...unless I give her a motrin at 3pm. If I do that, she gets anxiety but not fear aggressive. It keeps pointing to inflammation and histamine. It feels like she has a block that's keeping her immune system from fighting the EBV the way it should. Anyone ever done any supplementing with SAMe, ATP or methionine? Feels like these might address both energy and homocysteine/histamine. Also, anyone every treated for issues with ammonia or the Krebs Cycle? Just trolling for ideas.

Neutrophils are measured as part of a standard CBC panel, along with basophils and eosinophils. We run CBCs at least every 4 months, sometimes more often, including AST/ALT for liver function. FWIW, neither of my kids has ever had out of range on any of the "phils".

Does transfer factor really work? I mean no disrespect with the question. But we used it briefly a year ago and I never had the sense it did much and it was fairly expensive if I recall. But interested in hearing if anyone has opposite experiences... Likewise, we've tried curcumin without much effect. Not a dent in inflammation behaviors...then immediate response with motrin. Not trying to be Debbie Downer. Just trying to sort out where to put very limited funds. Can no longer afford "nice to haves". On the other hand, I've read Van Konynenburg's thoughts on CFS and methylation with some interest. Also wondering if anyone's tested for anemia or supplemented with iron? I feel like I'm overlooking something simple or obvious.

Came across these sites today and thought it was worth sharing... 15 scariest additives http://eatthis.menshealth.com/slideshow/print-list/186430 3 reasons to give up soda http://health.yahoo.net/experts/eatthis/3-shocking-soda-facts

I've been running into a lot more neighbors at the grocery store, mostly because it takes me forever to shop now that I read every label (and even then, this crap unfortunately still makes it into the cart - but not as often). 15 scariest additives http://eatthis.menshealth.com/slideshow/print-list/186430 3 reasons to give up soda http://health.yahoo.net/experts/eatthis/3-shocking-soda-facts