LNN

I saw in a recent post that a few people were considering beta-blockers (adderall, intuniv). I'd come across something recently that said beta-blockers can cause a nutritional deficiency but I couldn't remember the specifics. So I googled and found this article, which lists issues with antibiotics as well: http://www.drhoffman.com/page.cfm/155 Drugs that steal by Hoffman Center Staff Is there a thief hiding in your medicine cabinet? If you are currently taking a prescription medication, the answer to that question would be yes. Prescription medications deplete the body of essential nutrients. The ways that drugs negatively affect the status of nutrients in the body include inhibition of absorption, synthesis, transportation, storage, metabolism or excretion of individual nutrients. Older adults are especially in the high risk group of developing nutrient deficiencies due to the multiple prescription drugs they are taking, in addition to consuming inadequate diets, thus compounding the problem of nutrient deficiency. In 1991, older Americans filled 650 million prescriptions for drugs. The latest survey data indicate that 86% of Medicare beneficiaries are taking prescription medication. Many commonly prescribed medications may in some cases actually deplete your body of essential nutrients needed to treat the condition you are taking the medication to address. For example, beta blockers used to treat hypertension, angina, and arrhythmia, deplete the body of coenzyme Q10, which according to numerous scientific research (most recently in the March 1999 Journal of Human Hypertension), is actually part of the protocol to treat such conditions. Let's take a look at some classes of commonly prescribed medications and the nutrients they deplete. Antiarrhythmic agents: Digoxin depletes calcium, magnesium, phosphorus, and B1. Phenytoin, which is used for ventricular arrhythmia, as well as grand mal, simple partial and complex partial seizures, depletes the body of biotin, calcium, folic acid, thiamin, B12, vitamin D, and vitamin K. Antihypertensives: Beta blockers (used for hypertension, angina, and arrhythmia) deplete coenzyme Q10. ACE inhibitors (benazepril, captopril, enalapril, fosinopril, lisinopril), collectively deplete the body of zinc. Hydrochlorothiazide and triamterene deplete the body of B6, folic acid, and calcium. Antilipemic agents: Cholestyramine resin and colestipol deplete the body of beta-carotene, folic acid, vitamin A, B12, vitamin D, folic acid, vitamin E, vitamin K, calcium, iron, magnesium, phosphorus, and zinc. Statin drugs (atorvastatin, cerivastatin, fluvastatin, lovastatin, simvastatin) deplete the body of coenzyme Q10. Antidiabetic agents: metformin (glucophage), acetohexamide (dymelor), glyburide (diabeta, glynase, prestab, micronase), tolazaminde (tolinase), tolbutamide (orinase), as a group deplete coenzyme Q10, with desipramine also depleting the body of B12. Since diabetes is a cardiovascular disease risk factor, the depletion of these nutrients places the individual at increased risk, due to the fact that coenzyme Q10 and B12 contribute to proper cardiovascular health. Antibiotics: Besides destroying beneficial gut bacteria that aid digestion, protect against infection, and synthesize certain nutrients, tetracyclines (achromycin, sumycin, tetracap, panmycin), penicillins, cephalosporins, fluoroquinolones, and sulfonamides, deplete the body of B1, B2, B3, B6, B12, biotin, inositol, vitamin K, iron, and magnesium. Antidepressants: Amoxapine (asendin), desipramine (norpramin), nortriptyline (aventyl hydrochloride), protriptyline (vivactil), amitriptyline (elavil), clomipramine (anafranil), doxepin (adapin), and imipramine (tofranil) deplete the body of coenzyme Q10 and B2. Anti-inflammatory agents: The nonsteroidal anti-inflammatory drugs diclofenac, diflunisal, etodolac, fenoprofen, ibuprofen, ketoprofen, mefenamic acid, nabumetone, naproxen, and piroxicam all deplete the body of folic acid. Estrogens (conjugated and esterified): Premarin, estratab, and menest, deplete the body of B6, magnesium, and zinc. What can be done? First, make sure the prescribed medication is absolutely necessary by seeking advice from a nutritionally oriented physician. If no alternatives are available, discuss the need for replacing the depleted nutrients with your primary care physician, in addition to working with a nutritionist to help you design a healthy diet. By obtaining information from health professionals, and working closely with your doctor, you can avoid being a victim of drugs that steal. References: Best Pills Worst Pills II, Sidney M. Wolfe, MD, Rose-Ellen Hope, R.Ph, Public Citizen's Health Research Group, Washington DC, 1993. Drug-Induced Nutrient Depletion Handbook, Ross Pelton, RPh, Ph.D., CCN; James B. LaValle, RPh, DHM, NMD, CCN; Ernest B. Hawkins, RPh, MS; Daniel L. Drinsky, RPh, MS, Lexicomp Clinical Reference Library, 1999. Heart Drugs, Martin Goldman, MD, Henry Holt Publishing, Inc., New York, 1992. Singh RB; Niaz MA; Rastogi SS; Shukla PK; Thakur AS, Effect of hydrosoluble coenzyme Q10 on blood pressures and insulin resistance in hypertensive patients with coronary artery disease. J Hum Hypertens 1999 Mar;13(3):203-8.

lfran is the resident thyroid guru, so hopefully she'll chime in. But my understanding is that TSH stimulates the thyroid to produce more thyroid hormone. This is stored in the body as T4 and then converted into T3 for active use. A low T4 would mean a low storage level. I'm not versed enough to say what a low T4 might mean but you can find a lot of info at stopthethyroidmadness.com In addition to SFMom's comments about iodide, selenium deficiency and B1 deficiency can also effect thryoid function.

My DDs TSH has been elevated since last fall. All of her other thyroid numbers have been consistently normal (negative for Hashimoto's, celiacs, all ratios normal). The "gold" test you can do is to take his/her basal body temp. For 5-7 days in a row, take the temp under the armpit first thing in the morning, before the child gets out of bed. A normal temp is 1 degree lower when you use under the armpit vs. under the tongue, so normal = 97.6 If you're hypothyroid, you often have a morning body temp that's lower than normal. Google for more precise numbers, but it's an easy home test. I did this for my DD and her temp was normal, so it helped me let go of the fear that something was being dismissed by both her LLMD and pediatrician. But of course, I can't let it go entirely. Other glands that can effect TSH are arednals and pituitary. So we did a cortisol test. Quest unfortunately screwed it up. You send in 4 saliva samples, from 8am, 12pm, 4pm and 8pm. They reported all the samples as being taken at 10am. So it ruined the ability to see if DD had a normal curve to her levels. But one of her levels was elevated regardless of what time of day it was taken, so rather than re-do the test, we're trying adrenal support and will re-assess in a few months. My pediatrician had no problem ordering thryoid panel (Hashimotos, celiacs, T3, Reverse T3, T4, TSH, IgA levels). So you may not need to see a specialist unless the panel has concerning results.

Smarty - based on 23andMe, my DH and DS (PANS) can't tolerate a lot of D (VDR Taq +/-). Both have taken high doses in the past and I can't say if D ever effected DS's symptoms, as it just wasn't one of the things I ever had on my radar. But since doing our own supplement "makeover" in the spring, I eliminated the D from DS's regimen to try to lower dopamine and eliminate "noise" while we tried to find the source of an OCD episode (artemisinin "cured" it tho we're not sure what the trigger was). But this fall, I know I'll need to add some in, as New England winters make everyone low in D - and DS has tested low in the winter. So my plan is to use a D3/Vitamin K supplement with the hopes that the K helps direct the D into bone development more than toward dopamine synthesis. Anyone else have any suggestions or experience?

I've never heard anyone say you can't give ibuprofen while also being on antibiotics. Nearly every Pandas doctor uses them in combination and many parents here have had great success with it. Pr40 - can you explain your reasoning behind this? This is contrary to everything I've ever read or experienced. Thanks.

I'm wondering if any of your doctors have ever tested for parvo or toxoplasma gondii. I don't doubt that your son also had/has the other infections you've found, but you might find this article very interesting http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/308873/ Given your location, I'd also consider/test for the effects of mold toxicity. Here's a brief discussion of how mold can trigger neuropsych issues: http://www.survivingmold.com/diagnosis/the-biotoxin-pathway Here's a list of tests that are worth discussing: http://www.survivingmold.com/diagnosis/lab-tests mold can be just as debilitating to a PANS kid as an infection. Hope you find some answers soon!

You do need to take methylB12 and methylfolate together or you get a folate trap. They need each other as co-factors. But as Pr40 says, you can start the methylB12 first if you want to better guage your build-up - but I'd try to add some of each instead of getting up to a large dose of B12 and then adding the methylfolate. You need one to "metabolize" the other. He also gives a good suggestion on using niacin (vitamin B3) as a good "antidote" if you give too much methylfolate. It mops up the excess methyl groups. You can use a small (50 mg) dose of niacinamide (or non-flush niaciin). Regular niacin can cause the skin to flush temporarily. Niacinamide doesn't cause the flush. Most niacinamide supplements come in mega doses, so you'd need to empty most of the capsule. But when we were trying to zero in on my DDs dose, I OD'd her more than once and a quick sprinkle of 50mg of niacinamide, hidden in the creme of an oreo, stopped her bi-polar raging within the hour. But on a regular basis, she avoids mutlivitamins with niacin because they usually have too high a dose for her. Because she has very specific needs for such a low dose of methylfolate, I've not found a good B complex to use for her. So she takes the methylfolate (in liquid form - 1 drop of this http://www.holisticheal.com/methylmate-b-nutritional-supplement.html ) and the methylB12 http://www.sourcenaturals.com/products/GP1217/ separately. I'm still on the lookout for a B complex but for the time being, we supplement individual vitamins - lots of pills but we each get what we need in the right doses. All of the Bs are important for a number of body functions and they do work together. But an individual's need for each one doesn't fit neatly into some RDA table. Not everyone can handle large doses of B6 or even P-5-P. B6 is really important for detox and glutathione production but the dose can vary by person. My son and I need a high dose because we have a condition called pyroluria (a genetic condition that causes a zinc and B6 deficiency). My DD and DH have low tolerance for B6. It sounds like your son does too. But... it could be that he has methylation blocks - clogs that are keeping things from running smoothly. It's possible that he's not ready to handle the detox that the B6 provokes - there may still be bottlenecks up stream. It could be that once you get the methylfolate/B12 dosing dialed in, you could add small doses of P-5-P back in and see what happens. It might be ok then. Or maybe not. It's trial and error. But like Mayzoo, I've found 23andMe testing helpful in figuring it out for each family member.

These are high doses of methylfolate and methylcobalamin to start out with. I'd suggest cutting the dose into 6ths - if these are tablets, cut in half and give one half of one tablet for 1-2 weeks, then build up. If these are capsules, open the capsule and sprinkle half into a spoonful of something. You may end up at this dose, ebing homozygous. But you need to start low and slow. If a system has been dormant/sluggish, you will experience a fair amount of detox as the system re-starts. You don't want to crank things up to full speed all of a sudden. Chances are, if you drop to 1/6 the current dose, you should see tics resolve over the next 2-5 days. Personally, I wouldn't add anything unless you've used it before without incident. Otherwise, you won't know if it's the methylation supplements or the enhansa causing any subsequent issues. I think I'd give it 2-5 days to clear out and then re-assess whether you need to add anything else. JMHO edit - for a point of reference, my DD @60 lbs is heterozygous and takes 67 MICROgrams (mcg) of methylfolate every other day and 1000mcg methylcobalamin every day. My DH heterozygous takes 800mcg methylfolate every day and 1000mcg methylcobalimin every day. So 3 mgs of methylfolate is almost 4x more than my DH takes. Granted, he is only heterozygous. So 3mg may be a good end point for your son but probably not a good starting dose.

I'm curious why you wouldn't just continue to give Goldenseal? I don't see anything in it that's "bad" so why try to isolate one single ingredient?

It's hard to comment on labs without understanding her symptoms and her treatments. I've read of her issues regarding sleep and I see autism and chiari in your signature line. But autism has a wide variety of presentations and I don't know anything about how Arnold Chiair malformation could be contributing to her issues. I know you've been looking into lyme but not sure if you have labs that indicate lyme or if you're just pursuing it to rule it out? I know some parents point to the lack of high antibodies to the pneumoccocal vaccine as evidence of a weak immune response. But you need to consider which of these strains she's ever been vaccinated against and how long ago. If you test 14 titers but she's only been vaccinated against 7, you wouldn't expect the other 7 to be high. Likewise, if it was a decade ago, low titers have one meaning but if the vaccine was 6 months ago, that would have a different meaning. So context is important in understanding this test. She clearly has active Coxsackies and HHV6 IgG seems to suggest this may be active as well. What anti-virals are you using and have you seen any response? Have you ever tested her nutritional health with either a panel looking at vitamin and mineral levels or a stool sample looking at gut health? Have you tested heavy metals? I know you've been considering a new doctor - because of the autism and Chiari, I'd consider Ken Bock or Nancy O'Hara. It seems they would have the most experience in these issues.

Just about everyone I know who's used this loves it. But of course I have a contrary experience. DD didn't do well on it - made her irritable - maybe because it's a high sulfur and she is CBS+/-. DS got extremely angry on it - in a way that I couldn't imagine pushing thru. Curcumin is an MAO-A inhibitor and DS is MAO-A - so the last thing he needs is more MAO-A inhibition. Maybe it just made him too high in dopamine, which can lead to aggression and quick temper. IDK. But it was a no-go for us. Worth trying, since I haven't heard of it being a problem for most people and it's not expensive. Hope it works for you!

My son was 6 1/2 for his T&A. He went in in the morning and was home in the afternoon. Turns out he's sensitive to anesthesia, so he woke up crying (not uncommon) and seemed ok in recovery. Waited until we got int he car and drove out of the parking lot before he threw up - on me. Luckily it was only Popsicle juice. My son had no serious issues in recovery. Sore throat for a few days - helped by tylenol with codeine. He was fine 2 weeks later. He was on augmentin prior to surgery and switched to zith post-surgery and for a few months after that per our Pandas dr. (the switched back to augmentin - zith didn't seem to work as well for him). he made huge gains post-surgery. Tho the tonsils looked normal size, the adenoids were enlarged so it's possible there was chronic infection in them. Didn't have them cultured. They already thought I was a little "high strung" and I just wanted them out. So I didn't push my luck by asking for a culture, so long as they were gone. What's his reasoning for wanting her overnight? Is it his normal protocol or something specific to your daughter?

Yes, they are two different minerals Manganese is a trace mineral that is present in tiny amounts in the body. It is found mostly in bones, the liver, kidneys, and pancreas. Manganese helps the body form connective tissue, bones, blood clotting factors, and sex hormones. It also plays a role in fat and carbohydrate metabolism, calcium absorption, and blood sugar regulation. Manganese is also necessary for normal brain and nerve function. Manganese is a component of the antioxidant enzyme superoxide dismutase (SOD), which helps fight free radicals. Free radicals occur naturally in the body but can damage cell membranes and DNA. They may play a role in aging, as well as the development of a number of health conditions, including heart disease and cancer. Antioxidants, such as SOD, can help neutralize free radicals and reduce or even help prevent some of the damage they cause. Low levels of manganese in the body can contribute to infertility, bone malformation, weakness, and seizures. It is fairly easy to get enough manganese in your diet -- this nutrient is found in whole grains, nuts, and seeds -- but some experts estimate that as many as 37% of Americans do not get the recommended dietary intake (RDI) of manganese in their diet. The American diet tends to contain more refined grains than whole grains, and refined grains only provide half the amount of manganese as whole grains. However, too much manganese in the diet could lead to high levels of manganese in the body tissues. Abnormal concentrations of manganese in the brain, especially in the basal ganglia, are associated with neurological disorders similar to Parkinson's disease. Early life manganese exposure at high levels, or low levels, may impact neurodevelopment. Elevated manganese is also associated with poor cognitive performance in school children. Source: Manganese | University of Maryland Medical Center http://umm.edu/health/medical/altmed/supplement/manganese#ixzz2Yqv0VnUJ University of Maryland Medical Center MagnesiumEvery organ in the body -- especially the heart, muscles, and kidneys -- needs the mineral magnesium. It also contributes to the makeup of teeth and bones. Most important, it activates enzymes, contributes to energy production, and helps regulate calcium levels, as well as copper, zinc, potassium, vitamin D, and other important nutrients in the body. You can get magnesium from many foods. However, most people in the United States probably do not get as much magnesium as they should from their diet. Foods rich in magnesium include whole grains, nuts, and green vegetables. Green leafy vegetables are particularly good sources of magnesium. Although you may not get enough magnesium from your diet, it’s rare to be truly deficient in magnesium. Certain medical conditions, however, can upset the body's magnesium balance. For example, an intestinal virus that causes vomiting or diarrhea can cause temporary magnesium deficiencies. Some gastrointestinal diseases (such as irritable bowel syndrome or IBS and ulcerative colitis), diabetes, pancreatitis, hyperthyroidism (high thyroid hormone levels), kidney disease, and taking diuretics can lead to deficiencies. Too much coffee, soda, salt, or alcohol, as well as heavy menstrual periods, excessive sweating, and prolonged stress can also lower magnesium levels. Symptoms of magnesium deficiency may include agitation and anxiety, restless leg syndrome (RLS), sleep disorders, irritability, nausea and vomiting, abnormal heart rhythms, low blood pressure, confusion, muscle spasm and weakness, hyperventilation, insomnia, poor nail growth, and even seizures. Source: Magnesium | University of Maryland Medical Center http://umm.edu/health/medical-reference-guide/complementary-and-alternative-medicine-guide/supplement/magnesium#ixzz2YqvAf8N4

No new info - basically a summary of Pam Weintraub's previous writings - but so good to see it on CNN http://www.cnn.com/2013/07/12/opinion/weintraub-lyme-disease/index.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+rss%2Fcnn_topstories+%28RSS%3A+Top+Stories%29&utm_content=My+Yahoo (CNN) -- Our nightmare began in 1993 after we moved from the city to a house down a winding country road abutting a spruce forest in Chappaqua, New York. Our little woods were home to mice, deer and ticks harboring the infectious agent of Lyme disease. We weren't especially concerned. As seasoned science journalists, my husband and I had researched the risk of tick-borne disease by reading medical journals, finding a raft of articles on a wave of "Lyme hysteria" sweeping the Northeast suburbs; the disease, some of the authors said, was mild and benign. Perhaps that's why, as one of our sons and then the other got sick, our pediatrician resisted testing for Lyme disease. When my older son, Jason, 14, developed a mottled rash spreading over his torso in 1998, our doctor's office told us that because it wasn't a literal bull's eye -- believed to be the classic indication of Lyme -- it couldn't be Lyme (a misconception still common today despite voluminous research to the contrary). By 2000, Jason suffered aversion to light, profound fatigue and shooting pain throughout his arms and legs. Mostly to placate me, our pediatrician finally ordered a Lyme disease test. It came back positive. But our doctor still rejected Lyme disease as the cause, instead proposing a psychiatric disorder. The university-based psychiatrist we then consulted called the pediatrician a quack. Our older son, he said, was physically ill. My family would spend the next decade struggling to get well. Along the way, we had to navigate one of the most vitriolic fights in medicine. As the scientific community fought over the very nature of Lyme disease, debating everything from who actually had it to what treatment worked best, misdiagnosed patients were left to wander the medical outback without a compass or any clear path back to health. Caused by the spirochete, Borrelia burgdorferi (a coiled bacterium such as the one that causes syphilis), Lyme is the most frequently reported tick-borne disease in the United States. In 2011, some 33,000 cases met the Centers for Disease Control and Prevention's definition. But there are far more patients with the infection since only a fraction of cases are reported. When doctors attuned to the CDC's rigorous definition resist diagnosing any but the most classic patients -- those with an obvious Lyme rash or highly positive test -- it means patients are left to advance to later, harder-to-treat stages of the disease. Adding to the mess, physicians frequently fail to test for other, often-debilitating infections from the same black-legged ticks: Babesia, the cause of a malaria-like illness; Anaplasma, an intracellular bacterium; and another spirochete, Borrelia miyamotoi, recently documented as the cause of a relapsing-remitting Lyme-like disease. In fact, there is a lot of confusion over what may or may not be causing Lyme and other tick-borne diseases around the United States. In California, scientists have found several new spirochetes yet to be vetted as sources of Lyme-like illness, and researchers in Florida just isolated Lyme spirochetes from ticks despite CDC's website saying not to worry. Then there's the smackdown over chronic Lyme: Do Lyme patients stay sick following treatment because the infection is still there? In the 1990s, the National Institutes of Health sought to answer the question by funding a series of studies, the first of which has informed the treatment guidelines published by the Infectious Diseases Society of America ever since. That study monitored 136 Lyme patients who remained chronically ill after antibiotic therapy. In other words, they still showed symptoms of the illness. And yet some 700 blood and spinal fluid samples taken from them yielded no hint of the spirochete. On one side, experts embraced this small study as proof that chronic Lyme was a myth. They believed the sickness had to be caused by something else since patients showed no sign of the spirochete. But patients and their doctors were unconvinced. Spirochetes leave body fluids for tissue early in the course of disease, after all, explaining lack of evidence in blood. And researchers had reported persistent spirochetes in the tissue of treated mammals for years. To resolve the mystery, the NIH commissioned similar experiments with rhesus monkeys. Instead of searching monkey blood for DNA after antibiotic treatment, the researchers would sacrifice the animals and scour their tissue for signs of the Lyme spirochete, including the RNA that is a surer sign of active disease. The monkey studies, published in 2012 by scientists at Tulane, document the presence of Borrelia burgdorferi DNA and RNA following aggressive antibiotic treatment. When uninfected ticks fed on those treated monkeys, they literally ingested intact spirochetes -- proof that the organism remained. Are small numbers of living spirochetes driving persistent symptoms? Scientific resolution has yet to come, but even the NIH has seen fit to ask the question, launching an ongoing study that tests the ability of treated patients to transmit living Lyme spirochetes to biting ticks. Despite so many unknowns, continued insistence that Lyme patients are mentally ill has been a drumbeat in our Lymelands, creating a stigma that hampers treatment or the chance of getting well. What we need here, the Institute of Medicine has suggested, is a "process of conflict resolution" to create "a new environment of trust." Progress in research can only happen if the key stakeholders -- the patients -- are included in the work. Some groups have tried: In June, the National Institute of Standards and Technology held a meeting to help develop better tests. This is a crucial endeavor since standard tests based on legacy technology pick up real patients between just 45% and 75% of the time, especially in the early phase of the disease. Patients and scientists worked together on the NIST event, but collaboration has often been difficult if not impossible to achieve. For instance, a group of scientists has lobbied against federal legislation to increase funding for Lyme disease research. Why? That's just counterproductive. Powerful 21st-century technologies can help us, but first we've got to admit that waters are muddy and urgent questions remain. Calling patients "Lyme-loonies" or "part of an anti-science movement that denies both the viral cause of AIDS and the benefits of vaccines," is hurtful and untrue. After all, questioning the value of research that keeps one locked in illness is hardly on par with denying HIV. The real science deniers are those circling the wagons around outdated studies, leaving patients desperate and sick while protecting their academic turf.

When this finally kits the market in a few years, sign me up. Can't imagine 24 hrs of not being paranoid about the kids rolling in the lawn. After studying tick infestations for 20 years, Holly Gaff scoffed at the idea of using robots to kill the blood-sucking, disease-causing pests. But that was before she got her hands on one. Gaff recently finished the first round of experiments on technology developed by a team of Virginia Military Institute engineers. The results surprised her as much as it did those who designed it. The robot killed 75 percent of ticks during the least effective trial at a wildlife preserve trail in Portsmouth. On the rest, it completely wiped out the population — all without spraying dangerous chemicals.... http://www.roanoke.com/news/2066114-12/vmi-engineers-develop-robot-to-lure-kill-off.html

Dr L and Georgetown do Pex on a regular basis. But if you're fighting lyme, I'd wonder about a procedure that removes antibodies. Not sure that's a good idea in a body that's fighting an active infection. I'm guessing you mean his dopamine autoantibody numbers are high and not dopamine itself - i don't think Cunningham's test measure actual dopamine levels. FWIW - my son was a big ticcer. For him, he tics when his body has more toxins from dying bacteria than he can handle. Tons of detox and anti-inflammatories helped him. Pex helped for about a month but he relapsed because the chronic infection (lyme) hadn't been found or treated back then. It was great to see him not tic but it was a quite a procedure to go through for an unfortunately short-lived benefit.

I don't think there's any ideal solution. Getting your fish oil from fish means you need to be very vigilant about the source of the fish, heavy metals, environmental toxins... Like lfran, Omega 3s have always brought issues for my son. One possible reason is he has pyroluria and Klinghardt says that this can create a deficiency in Omega 6s. Since Omega 6s and 3s supposedly compete for the same receptor sites, supplementing Omega 3s in someone with pyroluria exacerbates the Omega 6 deficiency even more. He recommends those with pyroluria avoid Omega 3s and use Evening Primrose Oil as an Omega 6 that's anti-inflammatory (most Omega 6s are pro-inflammatory). Been awhile since I was up on all this but this is what I recall from my reading.

So glad you got a good night's sleep!! Hopefully you have enough augmentin stashed to get you thru to next week (don't you sometimes feel like one of those survivalists who has 7 years worth of water jugs in a bunker - except ours in the form of antibiotics?) Sure seems like you have some good clues and a way out of the woods. If you still want to try the moly, you can get it in drops http://www.holisticheal.com/molybdenum-drops.html - it has no taste. I put three drops in a 5ml medicine cup of water and the kids drink it no problem - tastes like water. It may still help with yeast die off and flapping. Good luck next week - keep us posted!

When you have her vision assessed, make sure it includes an assessment for convergence insufficiency. Many optometrists don't test for this or don't support therapy or prism lenses to correct it. My daughter's pediatrician diagnosed her at age 4 but the optometrist they referred us to dismissed the diagnosis and instead only prescribed glasses for farsightedness and astigmatism, not the convergence insufficiency. For 2 yrs, she kept saying the glasses didn't help. When she advanced to chapter books, her reading took a huge dive - kept losing her place, not recognizing words she clearly knew, too tired to read for long even tho she's an avid reader... We finally took her to a behavioral optometrist who prescribed different lenses and did vision therapy. Her reading is once again above grade level and her CI has improved significantly. here's a site that explains it http://www.childrensvision.com/reading.htm It is similar to dyslexia but is different and can be treated. But you need the right doctor to detect it and fix it. As for the tics and Pandas connection - I think it's worth pursuing with a doctor who's friendly to the idea. At the top of the forum is a section called Helpful Threads and you'll find a list of doctors who've been helpful. I believe some members in Texas have seen Dr Rao and maybe they can give you feedback. My son (Pans) had severe tics and like your daughter, was headed for a TS diagnosis. His tics appear when his body is struggling to fight an infection and can't get rid of the toxins released by dying bacteria. It's a detox problem for him. Supporting the body with supplements and addressing infections as well as vitamin/mineral deficiencies helped tremendously. He is tic-free now. Always follow your gut. You may need to travel to find a supportive doctor(s) but it's been worth it for us.

When S&S prompted me to download Pamela Weintraub's update to Cure Unknown, it reminded me of just how good she is at taking medical info and making it easy to understand. Here's a site that has many of her articles: http://experiencelife.com/author/Pamela-Weintraub/ One article in particular caught my attention because it applies to many of us using prescriptions for cholesterol, blood pressure or stomach acid. She talks about how proton pump inhibitors (PPIs) reduce stomach acid but that low stomach acid is actually detrimental to the absorption of some essential nutrients, including B12. I know that some here use pepcid as a way to block histamine receptors and I know that these drugs are different than PPIs. But I pass it along as an FYI... Research from the National Institutes of Health, published in Current Gastroenterology Reports, shows that long-term use of PPIs can limit the body’s absorption of essential nutrients, including calcium, magnesium, iron and vitamin B12, which require gastric acid to be absorbed. Risks include not just osteoporosis, but also anemia, fatigue, seizures and cardiac events. http://experiencelife.com/article/the-other-drug-problem-2/ It's a fascinating article and if you're on any cholesterol, blood pressure or stomach medication, you need to read this one!

I'm so sorry you're in this mess. I'd still consider adding molybdenum and going after the yeast - nystatin, garlic, olive leaf extract...It's possible the clindamycin fuelded a yeast frat party.

Ditto NancyD's recommendation. It's an excellent read and parallels the Pandas controversy in so many ways. It really helps you understand why you can't rely on tests and she does such a great job making the story easy to follow. I read the downloaded chapter and while it was good to have recap of recent research and "advancements" - especially the importance of the monkey study and the over-the-top editorials from Steere - it was also maddening all over again. There is absolutely no scientific reason for IDSA to stand by it's archaic guidelines. What I was also struck by was Horowitz's views that it quickly becomes much more than lyme for so many patients - how true for my family.

We just did the basic lyme panel for $200 (back then). I decided to put the money we might've spent on additional testing toward the first consult with our LLMD and then let him decide what additional testing was necessary. He then used a different lab to test for bartonella that was covered by insurance and he never felt the other co-infections applied to my DS. You may also want to call them and see what they might recommend, given your geographical risks. UNF recently discovered new strains of lyme that aren't part of current tests http://news.wjct.org/post/unf-researchers-make-big-discovery-about-lyme-disease - so in addition to all the pitfalls of lyme testing, there's the added pitfall that not all strains are tested for. It's one reason that lyme remains a clinical diagnosis, like Pandas. Your other option is to look into Advanced Labs' test http://www.advanced-lab.com/spirochete.php which would give you "proof" of a live spirochette - but I don't know it their culture is specific to Borellia Burgdorfi or additional strains. May be worth a call to them as well. I know Philamom has done their test. You may want to send her a PM for her thoughts.

From all my years here, this is what I've come away with - if a child has Pans/Pandas, there is no "cure" aside from time. As kids mature past puberty, they seem to become less and less sensitive to the impact of a bacterial illness. Some of this is a physical reason - when you're born your thymus is quite large relative to the rest of your body. The thymus is what produces new antibodies against new antigens - it's like the recipe kitchen. As you grow, the thymus starts to shrink, so that by the time you've past puberty, it's the size of a walnut or smaller. This may be because when you're young, your body encounters a lot of infections for the first time and needs an active kitchen to cook up new antibodies to previously unseen bugs. As you age, your immune system has been around the block and the need to a large research kitchen is less. So the aging process is one possible reason that adults are less prone to Pans issues. The treatments you see discussed here - long term abx, plasmapheresis, IVIG, steroids, supplements, homeschooling, CBT/ERP - are aimed at remissions. Hopefully long term remissions. But nearly all the kids I know who are still kids are still susceptible to a Pans flare if they get sick again, even if they've enjoyed remissions of several years. My kids are in a great spot at the moment - life is exceptionally, joyously normal. But they still have Pans and are still vulnerable. They are healthy but not "cured". The key to long term remission is identifying the right infection/trigger and treating that properly. In some cases, it's an obvious strep infection and doesn't involve any other issues. In other cases, it can be a chronic infection (long term sinus issues, lyme, mycoplasma) that then weakens the body and other issues move in as well (viruses, chronic mold environment, nutritional deficiencies, yeast). It becomes a complicated, expensive, draining process of peeling an onion - having 20 people toss out ideas to explore and you having to decide which ones to pursue. But even the complicated cases - most parents eventually uncover layer by layer and get their kids back. There's not 100% guarantee. There may be people out there who don't have this experience. But from the people who post here, this is what seems to be true. I can tell you that having been thru truly awful times, things never got as bad as the early days. As traumatic as things have been, as ugly as some periods were, we never had to go back to the very darkest days, partly because once we had medical support, the element of feeling like you had no one who believed you went away. I could get help with a phone consult or office visit or late night call for a Latitudes BFF. As I learned, I became empowered and that made a lot of difference. Between the two kids, we have been through steroids, T&A, Pex, IVIG, probably 8 different abx combos, metals chelation, mold removal, pyroluria testing, methylation testing and supplements, vision therapy for convergence insufficiency, treated EBV and done lots of CBT/ERP. We've dealt with vocal and motor tics galore, moderate OCD and all the lovely Pans symptoms thru many, many flares. If someone had told me 5 years ago what was in store, I'd have run away from home. I don't dare write a sentence that says "Yes, my kids are 100% and are done with this %$#@!" But I can say I've gotten my kids back long enough to get to know the real them and they are awesome and strong and insightful and all our late night CBT sessions and talking thru fears have brought us closer. There have been gifts along the way. I am an entirely different - and hopefully better - mom than I would have been. Right this moment, they are 99 and 100%. That could change. They are not "cured". But they are not permanently damaged, they are happy and life is good.

Even if you did find a high CamK or elevated anti-neuronals - how would it change your strategy? My DD (CamK 183, antilysogangliosides >1200) did not have Pandas, may have had lyme (treated for 8 months) but ultimately got rid of her OCD/neuropsych issues thru methylation treatment. My DS (CamK 179) did not get well with Pex or IVIG - just many years of abx, supplements for pyroluria and recently yeast/biofilm treatments. So even knowing they had high CamK and an autoimmune inflammation component - the only thing the CamK did for me was reassured me that the neuropsych was infection-triggered and not lifelong. I don't know that it was helpful in terms of treatments that worked or didn't work. What would you do differently with a result? edit - i don't mean for this to sound so negative. When I first did the test, I "had" to know what was going on. I get that. But it was before we had an expert on board and I felt I needed it to give me scientific validation (and it was "only" $400 not $900). I play devils' advocate here because you already have a doctor on board willing to treat. So I'm not clear on why you want to do the test at this point. Also - have you tested for yeast? The inappropriate laughing caught my eye.