LNN

Bees - does sound like a plan. Personal opinion, but I'd add one thing at a time and I'd vote for the moly first for two reasons. 1. I'm not aware of any side effects it can cause, assuming you'd be staying in the 75mcg range, 1-2x/day. This will help with detox for yeast. 2. DeeDee's DD has had flapping (is also non-ASD) as a result of a CBS methylation issue. Moly is one of the main supplements you take with a CBS mutation. Both my DD and I have it and it helps both of us. So the moly could possibly help the flapping. I'd wait two weeks before then adding the Sacc B so that you had time to assess each one independently. Also, in the recent thread about different probiotics producing various neurotransmitters - Sacc B produces epinephrine and norepinephrine. It makes my DS very agitated, aggressive, impulsive. I know it's supposed to be a "good" yeast but not everyone can tolerate it. if you've never tried it before, you may want to get things calmed down before adding it to the mix. I tried it for the first time after things were ramped up after IVIG and found out a month later when I stopped the Sacc B, DS calmed down. Turns out I was making the post-IVIG nightmare worse, not better, with the Sacc B. Some do well on it, so I think you owe it to yourself to try it. But at a time when you'll be able to isolate its impact, not necessarily when things are already topsy turvy. jmho.

No, they're sores. But the baking soda was an idea in case the gums were inflamed due to some sort of infection/virus. Since it seems to help with canker sores, it seemed like a low risk idea to try.

lysine helps me and my kids with canker sores, but given her age, this might be tough. I suppose you could open a capsule and rub some on her gums and it would get ingested that way but not sure if it has a taste. Baking soda also works well for canker sores and red gums and because it's salty, the kids don't mind the taste as it dissolves. Something about the baking soda changes the PH and helps healing. Sort of a folk remedy but given her age, it might be a good place to start.

It's Ken http://www.bockintegrative.com/contact/directions-to-our-new-office/

The half life of an antibodies you rec'd from IVIG is approx. 3 weeks. So by now, the majority of donor antibodies are gone. In terms of an IVIG procedure causing lasting harm, it's unlikely. The one long term risk would be from contracting an infection that hadn't been screened for - you are receiving a human product. But that risk is very, very small. More likely is that there's still a chronic infection and what you're seeing is a return of PANS symptoms now that IVIG has worn off. Don't drive yourself nuts trying to figure out if the movements you're seeing are a tic or OCD. It doesn't matter. My son's OCD compulsions often involve movement compulsions - tic? OCD? either way, they respond when we hit the right treatment. Not sure of your history or your doctor, but infections to consider are: mycoplasma, lyme or bartonella tested using Igenex - not a standard commercial lab's western blot, yeast, sinus or tonsillitis (if he hasn't had a T&A), virus... It does seem you have more to investigate, but I wouldn't worry that IVIG has done permanent harm. My son had a horrible response to IVIG but he recovered and made tremendous progress once we discovered and treated the right things.

Trust your mom gut. If clindo is raising your antenna, follow your instincts. Yeast was my first suspicion as well. It could very well be herxing from the yeast. Try adding a charcoal a few hours after a diflucan dose if the schedule allows. Or try molybdenum - My DD and I supplement moly for methylation and we buy it in liquid form from Yasko's company. http://www.holisticheal.com/molybdenum-drops.html That way, I can control dosing much better. It has no taste. To understand how molybdenum can help with Candida, you need to see how your Candida overgrowth is releasing toxins into your system. The Candida yeast lives on sugars in your gut. When it processes these, one of the byproducts that it releases is a neurotoxin named acetaldehyde. This is just one of the toxins that Candida releases (there are a total of 79!), but it happens to be the most important. Acetaldehyde has a whole host of detrimental effects on your health and wellbeing. It can impair your brain function and even kill brain cells. Your endocrine, immune and respiratory systems can all be affected, and it also damages the membranes of your red blood cells, reducing their ability to carry oxygen round the body. Again this directly affects your brain, so you can see how acetaldehyde is linked to Candida symptoms like brain fog and fatigue. Acetaldehyde stays in your body – it does not get excreted like other toxins. A build up or accumulation of acetaldehyde can lead to joint pain, a feeling of weakness and aches in muscles, in addition to those harmful effects on your brain. Molybdenum helps by converting the acetaldehyde into acetic acid. This can then be excreted from the body like any other toxin. Alternatively, the acetic acid can actually be converted into an enzyme named acetyl coenzyme A, which is actually an important part of your metabolism. Acetaldehyde is also released during Candida Die-Off, which is when molybdenum is especially useful. If you think you are undergoing Die-Off and you are experiencing the usual fatigue and flu-like symptoms, Molybdenum may be able to help. http://www.thecandidadiet.com/molybdenum.htm I was in a situation similar to yours in that DS had a return of symptoms with no apparent infectious trigger and the addition of a third abx did nothing. I tried various things with no improvement. I finally wondered if abx were the problem, not the solution. A candida albicans blood test came back negative but there are other strains. So it wasn't a definitive answer. I had always used garlic as an anti-yeast supplement but apparently you need to rotate your anti-yeast army b/c the yeast can become resistant. After much trial and error, dead ends of various theories and supplements, we discussed two possible culprits with our LLMD. One was yeast/fungal and one was biofilms. Both seemed likely given our long history of treatment and 4 yrs of abx use. So LLMD put DS on artimisinin (in capsule form). (DS has been off all abx since April and was only on vitamin/mineral supplements). Two weeks into treatment and the OCD and other symptoms are virtually gone. There is one residual compulsion but it's getting weaker. Tomorrow we double the artimisinin to full dose - did 2 weeks at low dose b/c DS can herx severely sometimes. It seems to be doing the trick. We're waiting on stool test results but clinically, he's responding. If diflucan isn't working for you, maybe consider other anti-yeast options. But I think I'd pursue that before adding other abx, given that he was doing well before all this and you don't see any signs of a new infection. Given his history, yeast seems like a logical culprit to pursue as a next step. Hang in there and do try the moly. We use 3 drops (75 mcg) daily (maintenance dose) and add a second dose later in the day when die-off seems to be in the picture. Hope this helps.

Peglem is right. Elevated CamK does not mean Pandas. It does mean high cytokines and possible autoimmune response (i.e. PANS). Lyme can elevate CamK - even Dr Cunningham has said this. Since you have positive lyme and Bart results, I'd see Dr M, who's 30 min north of Dr J. He's an excellent LLMD and does test/treat parasites, viral infections, PANS, lyme & co, metals, stool testing, guidance on probiotics, good knowledge of detox and balancing herbs and abx, some methylation. He has a very long waiting list. Call for an appt and ask to be put on the waiting list. He gives priority to kids. I'll PM you his contact info.

I don't know anything about most on your list. I would avoid Duke as most there don't support Pandas or anything integrative. They are certainly IDSA oriented regardlng lyme and being in NC. won't have treated a lot of it - certainly not chronic lyme. Swedo is not a practitioner - she's a researcher. So aside from participating in the IVIG study, I don't see how she'd be able to treat your child. Of the rest, I only know of Bock, who would certainly be a good choice, as would Dr O'Hara in Wilton, CT. Both are DAN doctors who understand PANS and the need for integrative care. Yet, if lyme/bartonella is your major issue, you may also need an LLMD on the team. Have you or your DD been to an LLMD yet? Regrading MTHFR - while it is important, it may not be your only methylation issue. For that, you do want to add methyl-folate (not folic acid) and methyl B12. You need both to avoid a methyl trap. Very low doses to start. My DD takes 67mcg methylfolate every OTHER day and 1000 mcg methylB12 daily (methylB12 is poorly absorbed, which is why her dose is high compared to the methylfolate). But you may also want to consider additional mutations that can interfere with detox and/or make certain supplements a bad fit.

We've never tested for this but someone else here has this - you may want to start a new thread or search on "factor five" - there was some discussion a while back. I can't imagine them putting a child on a blood thinner, tho it's good to know pre-pregnancy. Do you know the name of the gene of the snp? I'd like to be able to go check our 23andMe results out of curiuosity. They may feel they need to make a referral for the reasons you list - education, planning. I think it's one of the risks of genetic testing and one reason docs don't want us all rushing out to get tested. You need to be prepared for the knowledge you uncover. Would be interested to hear what others have found when they explored this one.

We never used either of these but like RowingMom, always used probiotics, especially those with a decent amount of bifido bacteria. We also use odorless garlic and sometimes olive leaf extract to keep things in check. But not everyone can be on these for long stretches. My DD needs to restrict these due to a methylation issue. But they work well for my DS.

Bartonella is a separate test. If you did a standard lab test for lyme, you did not test for bartonella. Also, relying on a standard lab to test for lyme is not very reliable. Standard labs follow CDC guidelines which tell them to NOT test for certain antibodies that are very specific markers for lyme. Here's a good explanation: "In 1994 the CDC established a national surveillance criteria for Lyme disease. A national standard for reporting a positive DIAGNOSTIC result has never been developed. Most labs erroneously only report results based on these CDC criteria. The CDC criteria was developed concurrently with the Lyme vaccine. Certain key bands were omitted in the CDC test because these bands would react in persons who had received the Lyme vaccine. For a variety or reasons, the vaccine was removed from the market. Unfortunately, some key bands were never added back to the most commonly used Lyme Western Blot tests. Of 28 possible bands, the standard CDC test, which is not a diagnostic test, reports only 13 out of a possible 28 bands. Only 3 IgM bands are reported and only 10 IgG bands are reported. The test is called positive if 2/3 IgM bands react or if 5/10 IgG bands react. Unfortunately, the CDC has recently made the test even more restrictive. If a patient has a positive IgM response it must be followed by a positive IgG response after 4 weeks to be considered a positive result. Again, it must be emphasized that this is a surveillance test- a research tool- it cannot be claimed to be a accurate test for proving exposure to Lyme disease." http://lymemd.blogspot.com/2009/02/understanding-western-blot.html Under the pinned threads at the top of the forum are links to more detailed explanations of western blot tests and I highly recommend them. Dr T continues to rely on standard western blots which frustrates me to no end. If you cannot sustain a remission for more than 2 weeks and you're seeing an increase in symptoms from adding a second abx, then you really need to pursue lyme and bartonella testing thru Igenex labs, which looks for more specific markers than other labs. Given labs that are positive for mycoplasma, I don't think your current combo is effective against myco http://jac.oxfordjournals.org/content/40/5/622 and http://jama.jamanetwork.com/article.aspx?articleid=354251 But as RowingMom said, rifampin is sometimes used - always in combo with a second abx - for bartonella and lyme. The aggression and loss of impulse control you describe sound like my son when he was herxing from lyme treatment. Motrin helps take the edge off. I agree with RowingMom - if it were me, I'd dig deeper into lyme and bartonella and consider seeing an LLMD (lyme literate MD). Dr T is not the guy for lyme. Right now, you might be thinking that all his contact with strep is behind the flare. It may be part of the story. But the lack of remission since last year suggests a chronic infection that is still triggering symptoms. (btw - look up rifampin for dosing instructions. It works best taken on an empty stomach and should be taken away from certain supplements) And yes, you should absolutely be giving probiotics whenever using antibiotics. Probiotics need to be taken at least 2 hrs away from antibiotics. We dosed abx at dinner (rifampin was an hour before dinner if practical) and gave probiotics at bedtime so they could sit in the gut when stomach acids were lowers and they had a better chance to populate the intestines.

Send a PM to NancyD - she and her DD have been long, long time patients and love him.

DS was subdued during the first week but his tics, which had greatly subsided, increased. Perhaps b/c he had undiagnosed lyme and removing antibodies wasn't the right thing to do. But he improved a little each week for the first 6 weeks, then plateaued. Then he spent a lot of time with his BFF who had strep 6 times in 3 months until the BFF finally got a T&A. 4 months after Pex, DS was back to where he was pre-Pex. So DS's experiences aren't a good indicator for you. Has your DD just had this? Or are you contemplating?

First, yes, some of us do see complete remission, so try to put those fears to rest. As horrible as this disease is, it isn't permanent/forever. Among the friends I have whose kids are in remission (after repeated flares) there is no residual damage. They are healthy, happy kids. The trick is fully treating all chronic infections that are triggering the symptoms. Sometimes, this means a long time spent peeling an onion of issues, which can be really frustrating. But when you get to the bottom of things, you can get your child well. My DS was 6 when all this hit. He's almost 11 now. It boiled over with strep but Lyme was underneath it, as well as a genetic issue that causes a zinc/B6 deficiency. So it took a long time to treat (4 yrs combo abx, plasmapheresis, IVIG, prednisone tapers, many nutritional supplements, yeast treatment) but he is finally enjoying the trials and tribulations of being a normal kid. When we've used ibuprofen, we dose it every 6 hours while things are rough, including a dose at school given by the nurse. (we didn't exceed 3 doses/day). It helped a lot with anger and impulsiveness. We also use milk thistle, which helps the liver detox. Ibuprofen is processed through the liver so long term concerns involve stomach upset and liver toxicity. But I don't think that's an issue if used for a few weeks. Once things calm down on a reliable basis, we back down to twice a day and then once a day. I personally jump on it right away and give at the first sign of issues. Inflammation is a chain reaction and releases cytokines that act like a K-Mart blue light special, drawing more cytokines to the area, further increasing inflammation. So I view ibuprofen as a cop who does crowd control, telling the cytokines to "move along, nothing to see here". In a crisis, you have a cop stationed around the clock, IMO. I used to joke that I was the only mom (aside from others here) who looked forward to puberty because that would mean a reduced risk of Pans stuff. Now as puberty looms, I'm having second thoughts! But I can tell you that in 5 years, things never got as bad as the first few episodes when we had no medical support. Once we had someone who understood and was willing to provide abx and other support, we had a safety net. Not to say things didn't get ugly during lyme herxes, but never as bad as those first few episodes when I felt I was losing my child to madness. Ibuprofen still helps when DS is feeling a little off. I wouldn't be afraid to use it on a regular basis. Inflammation damage is far worse and so long as you stay within dosing guidelines and with a doctor's supervision, I think it's a tool that should be used at the first sign of trouble and used for the majority of a flare.

This was a really interesting article, courtesy of EAMom on FB - Lactobacillus and Bifidobacterium species are known to produce GABA. Escherichia, Bacillus, and Saccharomyces produce norepinephrine. Candida, Streptococcus, Escherichia, and Enterococcus produce serotonin. Bacillus and Serratia produce dopamine, and Lactobacillus species produce acetylcholine. That's pretty much the entire hit parade of major neurotransmitters (there's histamine and glutamate and a few others - and histamine is known to be produced by some bacteria that infect shellfish, for example, causing food poisoning). The most interesting case here is GABA, the major inhibitory neurotransmitter in the nervous system (it chills things out)--and there are whopping amounts made by the bacteria in fermented foods, and is also found in yogurt and typical probiotic capsules. GABA also turns out to be anti-inflammatory in the gut itself, decreasing the release of inflammatory cytokines. Thus there is a plausible mechanism by which certain probiotics could decrease inflammation and aid symptoms of conditions such as irritable bowel syndrome, and, considering the vagus nerve and all it's tendrils in the gut, have direct communication via the neurotransmitter GABA to the brain. The full article is here http://www.psychologytoday.com/blog/evolutionary-psychiatry/201206/groovy-probiotics and the author has a number of interesting articles on similar topics. She has a really interesting article on the role of the Vagus nerve in helping the gut communicate with the brain. What's interesting to me is that Saccharomyces produces norepinephrine. This stuff makes is in novocaine and makes me feel really speedy and agitated. So my DDS now uses a novacaine without it and it's way better. Wondering if this is one reason Sacc B makes my DS angry and aggressive. There's apparently an "ideal" ratio between probiotics and our LLMD feels we may sometimes have too much Lacto and not enough Bifido. Doing a stool test right now to test for yeast and fungus and one question will be - are we using the right blend of probiotics to have balanced flora. Thanks EAMom!

I wanted to make time to update my posts from last month. Last week, my DD had a re-evaluation from the behavioral optometrist - an abbreviated (1 hr) assessment similar to her initial assessment last fall. After 22 sessions, DD made very significant improvements. In one probem area, she went from testing at 4 deviations below normal to 2 deviations above normal. In another measurement, she went from the 0 percentile (unable to complete one cycle of an exercise in 60 seconds) to 38th percentile (able to complete 10 cycles of an exercise in 60 seconds). In about 2/3 of the areas where she had tested below average, she is now at or above average. The doctor would like to her to do 12 more sessions to work on the remaining areas of weakness. After taking a month off in July, I'm now feeling that it will be a wise investment and we'll re-start in August. I'll also probably scrounge up the money for DS as well. If we can find $5-7K for braces to improve cosmetics, then it seems well worth it to spend a few thousand to improve their eyesight. I have to say, seeing the test results - measurable, definitive - made me feel much better about the whole thing. I have no idea how Pans plays into CI - those with certain neurological disorders like Parkinson's seem to have a higher than average rate of CI. But I also believe that sometimes I may have blamed Pandas for reading or school problems that instead may have been CI-related. I'm now glad I can look back and say we treated both conditions.

My DS once had severe tics, along with many other severe symptoms. Over 4 yrs, we treated Pandas and Lyme and he finally got to a good place. In February, he started having physical compulsions - hard to say if it was OCD-driven or if you'd call them tics. But he was on 2 abx at the time. I added a third abx for 10 days and saw no change. So we went back to 2. By April, all other symptoms were gone and I started to suspect yeast. The candida antibody test came back negative and I dragged my feet on a stool test (just really tired at that point). Whatever was causing the tics, it seemed that it wasn't lyme or other bacterial infection. So we stopped all abx. The tics waned for a time as I re-focused on methylation issues and I decided we could live with a few residual compulsions, hoping they'd disappear with time. Perhaps all the abx had damaged the gut and he needed time to heal. But then the tics started to ramp up and other kids started noticing. My DS started complaining that he couldn't stop himself, that it was driving him crazy. So last week, he started artimisinin, we did the poop test and he feels the compulsions lessening their grip. I came to realize that he only tics when he's fighting some sort of infection that releases toxins and he struggles to get rid of those toxins. He doesn't tic when everything is as it should be. I guess my own take away is that my DS's tics are a sign things are not right. Yes, we can live with them when they're mild. But nothing says they'll stay mild and they can ramp up quickly. So I now view them as canaries in the coal mine. If your son is good at 95% and there are no other symptoms, then there's nothing wrong with saying you'll live with it. But I would keep an eye on it and make a mental list of things for your radar, like yeast, imbalances between copper/zinc, mold, etc.

They do test it - 59 snps actually. But Yasko only tags 2 snps as indicators of methylation issues. I believe (tho am not certain) that Labcorp is the lab that does 23andMe's testing. But whatever lab they use, it is CLIA certified. My kids' results matched the results we got from Quest. When you read stories about accuracy of genetic test companies, most of the anecdotes I see are in the vein of "they said I likely had blue eyes but my eyes are green" or "they said I had curly hair but mine is straight". Some of the "fun" analysis 23andMe gives you are probabilities based on a number of genes. But I've not read of anyone saying "Quest said I was positive for MTHFR C677T and 23andMe didn't". Doesn't mean it isn't possible, but that isn't the sort of inaccuracy I've read about. For me, it was well worth it for many reasons. You will not get everything you need from just using 23andMe. Their analysis is fun and somewhat informative but the real value is in downloading your raw data and 1. running it thru a free app called Genetic Genie (she asks for a $10 donation that is well worth it) that gives you a Yasko-like methylation analysis and 2. saving your date onto a thumb drive and sticking in a safe deposit box as well as having a copy on your PC so that as research comes out on various genes, you'll always have the raw data to check for your own susceptibilities.

Here's a recent NPR story on this issue: http://www.npr.org/blogs/health/2013/01/17/169634045/some-types-of-insurance-can-discriminate-based-on-genes I don't know that MTHFR specifically would alter your life insurance availability, as it mostly considered just one indicator of heart disease risk and you would likely be disclosing that risk by indicating a family history of related ailments. Plus, by the time life insurance becomes a major consideration in our lives - mid-life - you may already be on blood pressure medication and the life insurance co. would know that too. Not that this isn't a valid consideration when deciding to do genetic testing. But you also need to weigh the value of having decades to do something about it early in life, and the impact it can have on mental health for some of our Pans kids, like my DD. I used 23andMe and paid OOP, no insurance involvement. ($99 for first kit, $79 for additional kits if you order at the same time). I used Igenex to test for Lyme and did submit a claim thru insurance, got reimbursed 60%. But that was ok in my case, as my DS was then diagnosed with Lyme and his LLMD used Lyme CPT codes for our visits, which were also covered by insurance at 60% as the LLMD is out-of-network.

From what I understand, and from what JuliaFaith also says, following a Klinghardt protocol can be very difficult, particularly for kids who won't force themselves to swallow nasty-tasting concoctions. So I think you need to ask their office what's expected from the patient before spending a lot on a consultation. Klinghardt is well known for helping people who couldn't be helped by others. But his approached are unconventional and demanding. Patient compliance is critical for any protocol, so I think you need to understand whether your child could be compliant before traveling to see him. Another option is to see the Klinghardt Academy http://www.klinghardtacademy.com/ and ask if they can provide names of doctors who've completed some of their courses who are local to you. My kids' LLMD has attended a number of these trainings yet he works with a lot of kids and has modified some of Klinghardt's concoctions to be more palatable to kids (e.g. putting artimisin into capsule form so it doesn't have a taste, omitting some ingredients that push to costs out of reach). It's possible there may be help closer to you and you may want to call to investigate. If you had to fly to see Klinghardt, you'd have to be prepared to make that trip many times per year.

I came across a great blog and book describing what it's like to suffer with OCD. As painful as it is to read, it may help parents and other family members understand what our Pans kids are feelings but can't explain... The Danger of Doubt: The Ruthless and Frequently Misunderstood Logic of OCD 4 Comments | Posted June 27, 2013 Guest blog post by Fletcher Wortmann – OCD is called the “doubting disorder,” at least among people inclined to give cutesy alliterative nicknames to mental illness. OCD is the pathological intolerance of risk, however minute, and the surrender to protective ritual, however unbearable. I know this because I suffered from severe OCD symptoms for twenty years without my family, or teachers, or even therapists correctly identifying my symptoms. Despite frequent portrayals of OCD in books, television and film, I’ve found many people’s understanding of the disorder is tragically limited. Now, “intolerance of risk” may not sound atypical or extreme. After all, each of us has moments when, against probability and common sense, we attempt to eradicate ordinary uncertainty using our minds. Think about it: You get halfway around the block and realize that you might have forgotten to lock the front door, so you drive back around to check it. It’s near the end of the seventh inning and things aren’t looking good, so you pull out your favorite baseball cap because sometimes it seems to help. You call your child’s phone twice to make sure that she got to the party okay. You cross your fingers, you knock on wood, you wish on a coin or a star or a stray eyelash. Everyone does this. It’s not a problem for most people. But it’s a big problem for people with OCD. Obsession comes from a simple glitch in cognition. Ordinarily, you have a built-in time clock in your mind. After turning over a certain problem for a while, a committee of highly efficient business-people in your brain decides, “okay, that’s probably the best solution we can come up with for now – enough,” and they table the issue and move on. That’s healthy and normal. When you obsess, however, your mind refuses to admit defeat, to accept that you just can’t come up with a better answer. After all, what’s the harm in thinking about it just a little more? And more again? When you suffer from OCD, a sliver of doubt always persists that you haven’t examined the issue from every angle; and so you wrestle with your problem a little longer, trying to find a new solution that reduces your uncertainty and leaves you satisfied. Obsessive-compulsives are taken in, every time, by the promise of one more look at the problem, even if we’ve already worked on it for hours, for days, for months. OCD demands safety and certainty, and the fact that nothing can ever be totally certain is regrettable but irrelevant to its purposes. Sometimes this leads to the physical compulsions so many identify with the disorder. If we have scrupulosity and we’re afraid of God, we may run a rosary until the chain snaps. If we’re obsessed with catching a disease, we may wash our hands over and over again. Eventually the behavior of the sufferer is entirely divorced from reality. Hand-washing is no longer a basic hygienic practice but a magic charm, a banishment cast against the ambiguous, malevolent threat of all “germs.” But these physical compulsions, which so many assume are the greatest burden of OCD, may be only modest indicators of a terrible internal struggle. And, some of the most distressing forms of OCD have no visible signs, no tangible compulsions. I have a variant of the disorder referred to as “Pure O,” or purely obsessional OCD, characterized by runaway intrusive thoughts. With Pure O, the mind is held captive by its worst nightmares: fears that the world is about to end, for instance, or that the sufferer is a murderer or a sexual deviant who could succumb to uncontrollable violent urges at any moment. Whatever the single most inappropriate or offensive thing you can imagine, at any particular moment - Pure O knows what it is, and it exploits it. With Pure O, these problems can not be put to rest through physical rituals like hand-washing or counting. Instead, the sufferer is left obsessing, silently and almost continuously, incapable of finding conclusive proof that these hideous scenarios will not occur. We can not tell anyone, for fear of being labeled paranoid or psychotic, and because our symptoms are internal, people don’t notice, and we’re rarely offered help. As an OCD sufferer, I did any number of asinine, irrational things not because they would protect me, but because I thought they might, and I’d be darned if the one night I failed to properly pray the lord my soul to keep was the night I died before I woke. If a sadistic billionaire decided to gather every Pure O sufferer into an Arkham City of twitching misery, then (according to Lee Baer’s The Imp of the Mind) it would be the fourth-largest metropolis in the United States. Yet the disorder continues to be under-diagnosed. It is the invisibility of the disease that gives it power: because so few can recognize our symptoms and because so many do not understand them, many of us struggle for decades before successful diagnosis. OCD sufferers aren’t straight-jacketed neurotics or treacherous psychopaths or lovable buffoon detectives. We are people who suffer, in a way that is familiar to almost everyone, but to a degree that no one should have to endure. I lost the first twenty years of my life to OCD but I hope that, by continuing to spread awareness of the nature of the disorder, we can bring it out of the shadows and work to alleviate the suffering of so many. Copyright, Fletcher Wortmann, 2013. Author of Triggered: A Memoir of Obsessive-Compulsive Disorder (St. Martin’s Press), named one of Booklist’s “Top 10 Science & Health Books of 2012”. http://www.fletcherwortmann.com http://www.psychologytoday.com/blog/triggered

QM - so glad for you and DD!!!! Unfortunately, my own DD would never ingest coconut oil. She needs capsules that disguise any taste, even a taste most of us would like. It seems many anti-yeast, anti-fungals are high sulfite. I may try OLE for a few days. Or maybe some A-FNG I have on hand. Even if it too is a problem CBS-wise, the drunken sailor has got to be evicted from the house. I'd rather get rid of the yeast while restricting other foods and upping the moly, and then deal with CBS aftershocks. Hugs - my kids don't tolerate Sacc B at all. Makes them very angry. Have tried it even when yeast wasn't a problem and it resulted in a lot of defiance and yelling. But thank for the link. I'll do some browsing.

The fact that she responds so well to steroids, does this mean she's a good candidate for IVIG? Any ideas on how to find out if there is an infection lurking? We have an ENT appt. scheduled for July 11th to see about a T & A. We have a wonderful ped who has helped us thus far and she wanted us to lower the daily dose of Zith to M,W,F, but obviously, that back fired. Any advice on combo abx? Dr K and other docs have said that a positive response to steroids suggests a positive response to HD IVIG because it supports the idea that you're dealing with an autoimmune response. However, while prednisone was enormously helpful for my son several times over the years, our one HD IVIG was a horrible experience because he had undiagnosed lyme and it overwhelmed him. So my scientific study of one showed me this hypothesis is not true for everyone. A T&A was a big help for my DS - he had been on and off abx for a year and always relapsed shortly after abx stopped. When we did the T&A, he improved dramatically - for awhile. He likely had strep in his tonsils or adenoids that had built a biofilm or had otherwise grown resistant to the abx he'd been on. Then, as I said, there was lyme underneath it all and he eventually required many additional years of treatments. As for testing for additional infections, I'd wait until after the T&A and see how she's doing. If a few months after a T&A, you still see symptoms, I'd find a doctor willing to order an Igenex lyme test and test for mycoplasma antibodies. I would not recommend doing IVIG prior to testing at least for these two infections and I would not rely on a standard western blot for lyme. My kids were negative on the standard WB but had multiple, significant bands positive on Igenex. But as I said, do the T&A first and perhaps you won't need to go down this road at all. FWIW - when my son was in an auotimmune flare, prednisone gave us all a sigh of relief. When he's had it prior to Pandas and once when he was not in a flare, it made him agitated and hyper - the way it makes "normal" kids. So in that sense, prednisone was a good confirmation that we were dealing with autoimmune inflammation when we used it for flares.

Dee - wondering what you're using for CBS and what's working for you. DD took Yucca for 2 months but it didn't seem to help with her complaints of fatigue and Yucca raises estrogen, so I didn't refill when it ran out. She takes 75mcg of molybdenum but I just read that high copper can interfere with moly absorption and somehow raise cortisol and elevate TSH - which DD has been battling for some time. And she's had an ongoing issue trying to balance copper/zinc. Carnitine isn't an option for her b/c carnitine can raise your seizure threshold (DD has had one febrile seizure and one clonus episode) and it's used for hyperthryoid, so these two aspects make carnitine a no-go. She's not a big protein eater, except for cheese. So I'm wondering what's working for you. Also, what are you using for test strips - I've been on the fence about using them - so, so tired of being the nutty mom and previous urine collections have led to stage fright - with me holding a cup under her for 15 minutes while she refused to let things take their course. But...today we had to do a stool test for DS and as I stood in the bathroom shaking the little vials, making poop soup samples, I realized I had just put the nutty mom cap back on anyway, so maybe it's time to order some strips. Do tell....

I'm wanting to add some monolaurin for DD8 who seems to be drunk with yeast (not on abx). She's taking molybdenum to help break down the adelhyde released by yeast (which is what causes the drunken behaviors). But she had to stop taking garlic once I learned she has a CBS mutation and struggles with sulfites. For those who use/have used monlaurin, what brand/dose did you find effective? I cannot use Lauricidin - already tossed one jar of it a few years ago because no way were my kids putting those waxy balls into their mouths. I need a capsule form.