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lnn

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Everything posted by lnn

  1. lnn

    Need Help

    Mountainmom, My son had Lyme/Pandas and a month-long steroid taper helped him immensely twice, and did nothing once, over the 5 years he battled his illness. Our LLMD isn't a huge fan of prednisone but does recognize it has it's place for Pandas kids. Like your son, my daughter was in her darkest days yet had no definitive infections. She did have Marcons - you may want to ask about that. I may never know what exactly she was fighting, but I do know that a combo of bactrim and zith and prednisone saved her. Low dose naltrexone was also helpful. She has struggled immensely from mold issues - mold in her elementary school and now her Jr High. Prednisone isn't recommended for mold situations either, but desperate times called for desperate measures. She recently started Zoloft and although I've tried everything I could to avoid it, she does get relief and is glad she's on it. Inositol, Ashwagandha, Bacopa and looking into how your genetics affects methylation are also options for reducing anxiety. Cognitive behavior therapy wasn't hugely helpful for my daughter, but now that she's a little older, she's having great success with EMDR. So something to keep in mind as your son gets older, if he continues to struggle with anxiety. I know it feels like this will never end - and it is a grueling journey. But my son "grew up with" MomWithOCDSon's son - and he's now the healthy, obnoxious teenager I always hoped for, while her son is enjoying college. My daughter's journey has been harder and more complicated, but she too is making progress. So don't lose hope. Our kids do get better. But first they need to eat
  2. lnn

    Need Help

    Is your son still being treated for Lyme & co? Are you working with an LLMD? My DD suffered from Pans-induced anorexia and it was terrifying. For long term healing, I'd say you need a combo of antibiotics, rotated periodically. For the near term, you need to treat this for what it is - life-threatening, regardless of trigger/cause. Google the "maudsley approach" to treating eating disorders. It may be OCD that's keeping your son from eating, but his body needs calories or you end up with a cascade of physical health problems and mental health problems. For my DD, it took a combo of 2 antibiotics plus a month long steroid taper (starting at 60mg for a week, then 45 mg, then 30mg, then 15 mg per week). Within 36 hrs of starting this, she willing sat to eat for the first time in months.
  3. For about 2 years, I've had a dream of developing an "empathy" course for teachers to help them understand what it feels like to be a kid with OCD, tics, ADHD, etc. I'm finally in a position to make this a reality and thought I'd ask for your ideas. In this class, I plan to have teachers experience the discomfort of each symptom and then educate them - not about Pandas specifically, but on each symptom as a condition unto itself. So "here's what it feels like to have OCD" - now here's 5 min of info on OCD, how to treat it, what ERP is, how to help a child cope in the classroom..."here's what it feels like to have ADHD" - now here's 5 min of info on ADHD and coping ideas... The goal is only to help an adult realize that "just stop doing xyz" isn't very helpful to anyone. To get them to apreciate just how hard it is for a kid and to drive home the point that behaviors aren't acts of rebellion. For OCD, I will have everyone put their finger on one eyebrow and rub the hair toward the bridge of their nose (i.e. in the opposite direction the hair normally grows/lies). Then don't fix the hair for 2 minutes and try to concentrate on what I'm saying, not on the discomfort of the eyebrow. This is what it feels like to have "feels right" OCD - you just need to make things feel right before you can concentrate on something else. Next, I'll have everyone dip their index finger into a cup of honey. Rub fingers together. Then leave your fingers sticky for 2 minutes while needing to write, shake hands, use an object that's recently been made sticky by someone else - this is what it feels like to have germ contamination OCD. You just have this overwhelming need to clean your hands. For sensory processing, I'm going to pin a small, bunched up ball of Tulle onto the back of your shirt and ask you to concentrate on my lecture as you get annoyingly scratched by the Tulle. I may put a pebble in your shoe and tell you not to fidget with it. I may play an amplified tape recording of the hum of flourescent lights. For tics, I'll talk about how people can get itchy just from the power of suggestion. I'll go on about how just talking about being itchy can make you want to scratch your nose or cheek. How the need to scratch can become very distracting. Yes, you can suppress the urge to scratch for a time, just like you can suppress a tic for awhile. But the distracting urge to scratch doesn't go away. Then, when I finally tell you you can scratch, you'll probably have the need to scratch like crazy, just like the way someone with a tic will tic like crazy when they finally get to tic in a safe place. I need ideas on how to make someone experience ADHD, anxiety, "senior moments" where you knew something but now can't recall it, rages, etc... Does anyone have any ideas on how to make someone experience these symptoms?
  4. http://www.washingtonpost.com/sf/national/2016/03/21/beyond-the-catchphrase/ This article talks about using minocyline to regulate glutamate receptors - some patients saw their OCD melt away.
  5. I've been giving DS lecithin because it contains phosphatidylcholine (helps memory and other neuro functions) and may help strengthen the BBB. Thinking about opting for the more expensive stuff that is pure phosphatidylcholine. Does anyone have any experiences to share? Dosage info for DS10 who is 85lbs?
  6. My son struggled with Pandas/strep/lyme/mold from the ages of 6 to 12. It took him about 2 yrs to fully recover his cognitive/academic abilities. He went from an "IQ" (using a crude standardized test) of 93 to 116 and I suspect he'd score higher if tested now. The tests showed large discrepancies between his verbal abilities and his spatial math abilities. These have narrowed as he's recovered. Two things, in addition to fighting infections, really helped him academically. First, he was diagnosed with pyroluria - a zinc/B6 deficiency caused by his body produces excess pyroles, which are a waste product in the body's production of heme (blood). Pyroles bind to zinc and B6 and as your body eliminates the pyrole waste via urine, you end up peeing away zinc and B6, creating a deficiency. Taking a very high dose of zinc/B6 helped almost immediately (we use the supplement called Core by Biopure) and he will probably continue to take it well into adulthood. The second supplement that helps is phosphatidylserine. He takes PS10 from Jarrow. It plays a big role in concentration and focus. Phosphaytidylserine is one of the primary ingredients in Vayarin - an ADHD medication. He only takes it during the school year and it's not habit forming. I also try to remind myself - daily - that my role is to help my kids grow into healthy adults - mentally health, physically healthy, emotionally healthy. Grades are way down on my list. Life is filled with "grades" - even beyond academics. But what matters is helping my kids believe in themselves and to not focus on external judgments. If he's not ready to handle a traditional high school, there are online options, homeschooling, etc. Many ways to have a "successful" life. Sounds like your son has great support from you. Don't underestimate how important that is.
  7. No, we're not looking at yeast. We're looking at Lyme and chronic residual effects from mold illness. I've unfortunately been in this world of chronic infections for a long time, so my kids aren't strangers to nystatin, diflucan, anti-fungal herbs, molybdenum, arginine and the slew of other supplements used to manage fungal issues. My daughter is responding well, but in an unexpected way, to tindamax. Instead of herxing, it seems to just make her feel better - not home-run better, but incrementally better on the days she takes it. She also has a long history of mold illness and inflammation. Our LLMD has seen some Lyme patients respond well to diflucan as part of a lyme protocol. From Stephen Bhuner's site: http://buhnerhealinglyme.com/lyme/diflucan-for-lyme/ Dear Stephen, I was going to try Diflucan for systemic mold symptoms, and in my preparatory research, came across this interesting article A New Approach to Chronic Lyme Disease by Jill Neimark that tells about Dr. Fritz Schardt’s use of Diflucan (fluconazole) to treat chronic, advanced lyme disease. He says that fluconazole inhibits the enzyme cytochrome P450 that our livers use to detoxify chemicals and drugs. He believes that diflucan inhibits the growth and replication of borrelia, which has a primitive P450 defense. It does not necessarily kill it. He also says it penetrates into the cells, nervous system and brain, where borrelia may hide. What are your feelings on using Diflucan for chronic lyme, and for that matter, to treat systemic mold? Do you know of herbal counterparts that might have the same actions—for mold and lyme—yet potentially safer for our livers (or would that counteract the P450 weakening effect)? Much thanks. Stephen’s response: The excitement about this antifungal is due to one study that I am aware of: Eur J Med Res. 2004 Jul 30;9(7):334-6. Clinical effects of fluconazole in patients with neuroborreliosis. Schardt FW. Eleven patients with neuro-borreliosis had been treated with 200 mg fluconazole daily for 25 days after an unsuccessful therapy with antibiotics. At the end of treatment eight patients had no borreliosis symptoms and remained free of relapse in a follow-up examination one year later. In the remaining four patients, symptoms were considerably improved. At the end of therapy immune reactivity (IgM+) disappeared in three patients. Since borrelia spp. are almost exclusively localised intracellular, they may depend on certain metabolites of their eucaryotic host cell. Inhibition of P450 and other cytochromes by fluconazole may incapacitate Borrelia upon longterm exposure. The study is a small one and is difficult to extrapolate from, however it is promising and I would certainly consider the use of fluconazole for lyme. Certainly the use of the pharmaceutical for 25 days (and perhaps 50 as is now being suggested) is worth it with long term chronic lyme that has not responded to antibiotics. As to herbal counterparts: The exact actions of fluconazole in the treatment of lyme are unknown; there is more involved than simply inhibiting the enzyme cytochrome P450 that our livers use to detoxify chemicals and drugs. There is a specific kind of inhibition of specific aspects of that system. As yet, I have not done any research on those exact pathways and what herbs would do the same thing, so I cannot give an informed answer on it at this point in time. But diflucan can prolong the QT Interval, as can Lexapro and Azithromycin - and DD is on both. So before we can try diflucan, I want to get her off of Lexapro. As for herxng when you kill yeast - look into molybdenum, yucca root and arginine. When yeast dies, it throws off Acetaldehyde, which the body then converts into ammonia. A similar conversion takes place when your body detoxifies from drinking alcohol - which is why kids with yeast can act drunk - the same chemical reactions are happening in their bodies - as if they were drunk. Moly, yucca and arginine can all help detoxify ammonia and help with the "herx" symptoms of die-off.
  8. I think of two things when I hear brain fog and chronic fatigue as dominant symptoms - Lyme (or co-infection such as bartonella, babesia, ehrlichia, mycoplasma) and mold. i think the benefit of seeing a Pans specialist (i.e. not one who focuses solely on strep as a trigger, but one who will explore environmental factors and chronic infections) is that s/he will dig deeper to find the trigger and do various trials of treatments. My DD12 developed anorexia and panic attacks that but us in a critical situation. I have always been reluctant to use SSRIs (tho I don't at all judge those who need them). My reluctance stemmed from wanting to uncover the root issue without SSRIs masking or complicating our fact gathering. My kids' symptoms were manageable without an SSRI - until last summer. When my DD was faced with potential hospitalization, I felt pressure from our pediatrician and our therapist and my husband to use an SSRI - after all, how could I claim to be doing everything possible to help her if I was denying her relief, even if it went against my personal feelings? I couldn't justify letting my reservations take priority over er well-being. Her panic attacks and OCD were crippling. So I relented. I chose Lexapro due to it's long half-life and relative risk profile, given her medical and genetic/family history. I'm not sure the Lexapro did much, except help her sleep at night. We also started two antibiotics and prednisone a few weeks after starting the Lexapro, so I'll never be able to tease out what role the Lexapro played. But I do know there was an immediate and huge turn around within 36 hrs of antibiotics and steroids, so I tend to give much more credit to those. It's been 6 months and her doctor wants to introduce a new medication (diflucan). But both the Lexapro and azithromycin she's on increase the risk of prolonged QT intervals of the heart beat, as does diflucan. So it's too risky to have her on three meds that carry the same risk. We've started weaning off Lexapro and will probably switch to a different antibiotic and then add the diflucan. I can tell you that weaning off even a small dose of Lexapro (5mg) is proving to be difficult. Withdrawal symptoms are rough. So in hindsight, I wish I'd refrained from the Lexapro. But I think it made sense for where we were at back then. Follow your gut is all I can advise - and then don't beat yourself up for whichever decision you make.
  9. lnn

    PANDAS and LYME in siblings

    Given your kids' histories, I think it's very reasonable to suspect that there's a common infection, as well as possible genetics, that link your family's health issues. It could be Lyme (either congenital or from all of you being exposed during a shared hike or trip to an endemic area) or mycoplasma, which is highly contagious, or both, or these plus some other shared infection. It can also be that some of the mutations in the genes your family shares are contributing to the way your bodies are handling the strain. The first place I'd put my money is on seeing an LLMD (lyme literate MD). Initial visits are costly, and most don't take insurance, so you have to pay out of pocket and then submit your own claim for hopefully partial reimbursement. But these doctors specialize in chronic infectious diseases that can affect a variety of systems (endocrine, immune, gastro, neurological, etc). And they tend to be good at seeing things from an interconnected perspective instead of specialists who only look at one body system in relative isolation. They're good problem solvers. If finding or seeing an LLMD isn't something you can do quickly because of where you live, then I'd at least see if you can get Lyme tests for your 12 and 6 yr olds, preferably from Igenex Labs, as they test for lyme-specific bands that other labs don't test for, and can potentially catch cases other labs would miss. Finally, you might consider testing thru 23andMe, which consists of getting your kids to spit into a vial. You then get genetic data that can help you understand how their bodies might be struggling to make and balance neurotransmitters. Your 6 yr old might benefit from some supplements like niacinamide (flush-free niacin aka Vitamin B3), which for some people with genetic COMT mutations, can help them process/degrade adrenaline better and help them calm down more quickly (less rage/meanness). Both 23andMe and Igenex used to have special pricing for testing multiple family members at once. You can check to see if that's still the case. Follow your instincts. It seems very possible that there's a common link. Good luck!
  10. Since your DS is +/+, his body is struggling to convert any form of folic acid or folinic acid into methylfolate (+/+ means he's probably only converting about 10% of the raw stuff into the end product of methylfolate). You need to introduce both methylfolate and some form of B12 (cobalamin) - since these work as co-factors and you need both as part of your supplement plan. You want to avoid synthetic folate (found in cereals and other fortified foods and most multivitamins). I'd start with this product http://www.holisticheal.com/methyl-folate.html because it's a liquid and each drop is 67mcg. So you can build up slowly and drop down quickly while you tweak dosing. Later, you can switch to a tablet if you find he does well on a 400mcg or 800mcg dose. If he needs more than that, you can get a prescription for Deplin, which comes in 5mg and 10mg doses. But for now, start with 1-2 drops/day (I put mine into a small dixie up of water). Do this for a few days. Then add a sublingual B12 tablet. Any B12 that's swallowed doesn't make it into the blood stream - most of it doesn't seem to make it past the stomach acid. It's estimated that about 10% of a sublingual will get into your blood stream. So dissolving a tablet of 3000mcg of cobalamin will get roughly 300mcg into the blood stream. There are 4 forms of B12 - cyanocobalamin, which is the least desirable form and not very useful to the body. There's adenosylcobalamin and hydroxycobalamin -which is tolerated by most people. And there's methylcobalamin, which is good for people who are true undermethylators really need methyl groups. Which form is best for your son is going to be a matter of trial and error. If you happen to know the status of his COMT gene, this can help. But if you don't know it, I'd start with either 2000-3000 mcg of adeno or hydroxycobalamin. I'd start with one of these https://www.seekinghealth.com/adeno-b12-60-lozenges or https://www.seekinghealth.com/hydroxo-b12-60-lozengesor https://www.seekinghealth.com/hydrox-adeno-b12-60-lozenges Later, you can try methylcobalamin or different doses of any of the above to see if you can improve results. But these suggestions can get you started. Start with a low dose of methylfolate (maybe 150-200mcg) and a few days later, add in a sublingual form of B12. Do this for a week. If you see nothing, or if you see improvement to mood, increase the dose of methylfolate to maybe 300-400mcg for a week, and assuming you still see improvements, keep increasing dose until you start to see "bad" mood stuff creep back in. Then, if you start to see mood swings or mania, stop both the methylfolate and B12 for a few days to let things "drain". Then re-start at the last dose where things were good. While you're tweaking dosing, if you "overdose" on the methylfolate, you can give 100mg of niacinamide (vitamin B3) and this will quickly (20-30 min) soak up the extra methyl groups. Niacinamide is also useful any time you get rages. https://www.amazon.com/Source-Naturals-Niacinamide-Vitamin-Tablets/dp/B00020I7IU/ref=sr_1_2_a_it?ie=UTF8&qid=1489360057&sr=8-2&keywords=source+naturals+niacinamide Hope this helps
  11. I can't imagine anyone who understands mold saying that it wouldn't impair a child who has an autoimmune disease. That's nuts. My daughter struggled with mold exposure in her classroom and it definitely contributed to her Pans symptoms. We ended up home schooling for one year until she was able to matriculate into the Jr High School (different building). I would recommend two things - run an HLA-DR blood test to see if your daughter is among the 25% of people who can't rid their bodies of the toxins that molds throw off. If hr HLA-DR gene results put her into this category, you need to get her out of that environment, regardless of Pandas. A great place to read up on the subject is Dr Shoemaker's first book, Surviving Mold. And run some of the inflammation tests listed on his website http://www.survivingmold.com/diagnosis/lab-tests especially HLA-DR, C4A and MSH The second thing you can do is move your daughter out of the house for a few weeks - a hotel, a relative's house - and thoroughly wash everything she brings out of the house with her (clothes, stuffed animals, paper goods, etc). Then see if her health or symptoms improve. Knowing what I know now, I consider mold to be as much a threat to my daughter's mental and physical health as strep or lyme or any other illness.
  12. lnn

    Pans/Pandas and Anorexia?

    I will add that at 12, she's entering her final growth spurt. Calories are critical and being underweight now could have permanent effects. I think you need to be very vigilant. Fwiw, we reluctantly turned to lexapro. It didn't help with ocd. It only made her tired, and helped her fall asleep. That was a good thing. But there's a small study suggesting ssri's may stunt growth, so we'll be weaning off as we approach summer. Between the anorexia and lexapro, my dd12 hasn't grown any in the past year. I'd try adding a second antibiotic before adding an ssri. Imo
  13. lnn

    Pans/Pandas and Anorexia?

    In our situation, fbt was essential and the "why" behind the anorexia was temporarily irrelevant. It was eat or face a feeding tube. So we endured rages and hatred. We were in crisis. But once my daughter started antibiotics and prednisone, she became a partially willing participant. We still had to count calories and use fbt in order to fight the ocd. It just wasn't as intense of a battle. I would use bmi as a guide. You cannot let someone battling anorexia just eat when they want to. Whether it's from body dysmorphia or from pandas ocd, you can't trust an anorexic to eat responsibly. I agree with those telling you that the why doesn't matter, at least below a bmi of 18. It's too dangerous. If she's been battling this since last summer, you can't just wait for this flair to go away. You need anorexia triage until she gets rid of whatever infection is triggering the pandas
  14. Welcome to the forum and "welcome" to Pandas/Pans. I've unfortunately been at this for many years, first with my now recovered son and now with my daughter. I home schooled my daughter last year because her health was too precarious. Because it was only for one year and we always had the intention of returning to public school when she was able (for social reasons), our approach was probably different from yours. But I'll share what worked in case it helps. I think the biggest thing that was helpful was mindset. Like your daughter, mine went from being very capable to being very handicapped in what she could handle in terms of workload and abilities. There's a medical reason for this - inflammation in the brain creates what's called a cytokine storm. There are many inflammatory cytokines that become elevated, but one - CaM Kinase II - is essential for learning and memory - from Wikipedia: Ca2+ /calmodulin-dependent protein kinase II (CaM kinase II or CaMKII) is a serine/threonine-specific protein kinase that is regulated by the Ca2+ /calmodulin complex. CaMKII is involved in many signaling cascades and is thought to be an important mediator of learning and memory.[1] Misregulation of CaMKII is linked to Alzheimer’s disease, Angelman syndrome, and heart arrhythmia.[6 https://en.wikipedia.org/wiki/Ca2%2B/calmodulin-dependent_protein_kinase_II We had bad days and worse days. Some days, she was able to learn in a fairly typical manner and other days, it was like teaching someone who had suffered a brain injury like a stroke or car accident. So the most important thing I did each day was to feel out where she was at, what she was capable of that day (and I also had to realize that every day might put us at a different starting place, and sometimes she'd have different capabilities throughout the day). Re-setting my expectations on the fly was essential. Otherwise, I'd expect too much, she'd stress over disappointing me and over her own sense of loss. Much like working with someone who's in rehab for a stroke - how frustrating it is to not be able to do things you've easily done for your whole life. So forget about what she used to be able to do. Forget about what her brother can do. These are, for now, false points of reference. Start each lesson by assessing where she is at that moment and work with that. Do not show your frustration or expect more than she can give. That just blames her for something that's not in her control. You wouldn't do that to someone in rehab. You can push the way a cheerleader might - "hey, do you think you can do one more problem? No? Ok, take a break, you did a good job." But don't push with the thought that you can somehow push her back into being her old self (spoken from experience). My daughter (12) reads at a 12th grade level. But there were many times she couldn't focus on the words on the page. But she could listen. So I'd read her social studies book to her while she doodled (drawing helped her stay focused, ironically, because it's something that relaxes her and it distracted her from her anxiety). Then she'd answer questions about what I'd just read to her. Sometimes she could write the answers herself, sometimes I could see from her horrible handwriting that I'd have to scribe what she verbally told me. We just had to be flexible. We did a lot of verbal discussions. We broke lessons up into very small chunks - sometimes as little as 5 minutes. Then we'd re-group 15 minutes later, or an hour later, or a day later. I had to let go of my scheduling, my goals, and just listen to her body and support her. The old her was temporarily gone. I had to teach the person who showed up that day and just help that person do her best for that day. Not easy for a Type A mom. But it's what she needed. She is back in school this year, on a modified school day, with many absences (but for social reasons, she is adamant about being back in public). We often find ourselves having to do do school work at home to make up for missed days, and our approach is to do things in very small chunks. When she's feeling well, she takes pride in doing things independently. When she's in a bad place, I sit with her and coach her every step of the way. It's very much a teaching-as-if-you're-a-rehab-therapist approach. The amazing thing is that once the body heals, the old child comes back. You don't need to worry about her getting lazy or developing bad habits. No one wants to get back to her old self more than she does. When she heals, she will return to the independent, curious child she's been.
  15. lnn

    Herx? Help!

    The other thing to focus on is inflammation. You can only detox just so much, and based on your genetics, many of the things suggested for detox can actually work against you (if you have a genetic mutation in your CBS gene, which regulates your detox pathway). So taking things to reduce inflammation can also be very helpful. In addition to or instead of motrin, we use 1/4-1/2 tsp of Japanese Knotweed for general inflammation and 1/2 tsp of Red Sage 3-6 times/day. I've not used Burbur or Pinella so I can't comment on those. I highly recommend Stephen Buhner's books on Lyme and co-infections for excellent herbs that can be used in tandem with antibiotics to act as antibacterials and anti-inflammatories. You may also want to consider an anti-fungal like diflucan or nystatin. Doxy can be brutal on the gut bacteria and I'd imagine her gut is already vulnerable.
  16. With both COMT + and MTHFR +, I don't think it's a question of over or under methylation. It's both. Ben Lynch describes it as driving with one foot on the gas and one foot on the brake. My DD is in a similar situation - both in terms of her snps and lyme/bartonella. Every body is different, but here's what we've found helpful: CBS - my DD is only CBS +/-, so not as bad a predicament as you face, but we need to avoid the supplements commonly used for Lyme detox. No NAC, no alpha lipoic acid, no tumeric, no glutathione, no epsom salt baths. However, I don't restrict the foods you're supposed to avoid with CBS. My DD is recovering from Pans induced anorexia - the last thing I'm going to do is give her a list of foods to avoid. Instead, we just focus on reducing ammonia and managing sulfates/sulfites. She takes: 150 mg/day molybdenum 500 mg carnitine (important for her b/c she doesn't like beef, pork or chicken, so she doesn't get enough of this in her diet) 500mg arginine + 250 mg ornithine 3x/day - this not only fuels the urea/krebs cycle and helps the body eliminate ammonia and some toxins thru the kidneys, it also reduces inflammation in the endothelial layer of the blood vessels. This is really helpful for bartonella and for DD, it makes a huge difference in her stamina/fatigue sometimes we've also used yucca root or habiscus sabdarifa for ammonia but since adding the arginine, not so much, as the arginine gives us both ammonia reduction and inflammation reduction. For MTHFR - a B complex that doesn't contain B9 (folate) or B12. We use Seeking Health's B Minus, but I cut the dose into 1/4. A full capsule is far too high a dose IMO and my DH and DD don't feel well on it. I buy empty size 0 gel capsules from amazon and divide one capsule into 4 capsules. methylfolate - you need to experiment with dose. My DD12 only needs 135 mcg (only used 67 mcg when she was younger) and my DH takes 400 mcg from Solgar (Metafolin). I recommend Yasko's Methylmate B liquid methylfolate to start with. Each drop is 67mcg, so you can experiment with changing doses in small increments until you zero in on what works best. This is easier with a liquid than with tablets, so I'd start with the Methylmate B. B12 - because you have COMT, you probably don't want to use methylB12. I like Seeking Health's adenoB12 or hydroxyB12. Supposedly, you only absorb 10% of a sublingual B12, so 3000mcg nets you 300 mcg into the blood stream. You need to try both types to see which your DD prefers. There's no way to tell without experimenting. For COMT - despite needing methylfolate for MTHFR, your DD is staying ramped up on adrenaline a lot of the time. So Lynch suggests adding niacinamide (flush free niacin). My DD takes 100mg daily (or you can split the pill (Source Naturals makes a 100mg tablet) and give 50mg twice a day to even things out) the additional niacinamide helps with anger - a lot! It's also a good antidote for when you're tweaking methylfolate dosing and give too much. 50-100mg niacinamide will calm things down w/in 30 min. For MAO - if addressing MTHFR and COMT aren't enough to even out the moods, copper (1-2mg) can help MAO spin a little faster. You also need to avoid OTC cold and cough meds that say "do not take if you're using an MAO-I" - having an MAO+ already inhibits MAO, so you don't want to take anything that will make it work slower stillLyme detox - you get clobbered with messages that tell you you need to detox with Lyme treatments. This is hard when you're CBS+. So instead, I follow Stephen Buhner's advice, which is to focus on inflammation. If you keep inflammation down, the body is better able to detox itself. In addition to the arginine, I use 1/2 tsp of Japanese Knotweed and 1/2 tsp Red Sage - both 3x/day and on days where herxing is a concern (as we're currently pulsing tindamax), I do the Japanese Knotweed 6x/day. Again, I use the empty gel capsules - one size 00 capsule holds a little more than 1/4 tsp of liquid. You have about 1 min before the capsule will start to dissolve, which is enough time for DD to swallow the capsule. No way would she drink some of the herbs unless the taste is masked by the capsule. I know I didn't address the other snps. It's been a few years since this was my main focus, so I don't have much input on the others. Addressing MTHFR, CBS and COMT were enough to get DD stable emotionally, (when not in a flare). We've also had to treat the chronic infections but addressing the methylation issues definitely helped a lot. In doing this, DDs allergies became almost non-existent. One or two days in the spring, she'll need a quercetin, but most days, they don't bother her anymore. hope this helps give you a few ideas
  17. I found this post on another forum from one of my dear Latitudes friends - Rowingmom She took an excerpt from Buhner's facebook page (I think - or maybe his website) 2) In the EU/UK try: Julia Behrens-Medical herbalist Herstmonceux Health Centre Halisham Road, Herstmonceux East sussex BN274JX Tel:01323833935 Appointments-Mobile )7968366783 http://www.hmxihc.co.uk/ http://www.herbal-consultant.com http://www.albionclinic.org.uk Julia Behrens Medical Herbalist Albion Clinic 1 Albion Street Brighton BN2 2NE Work 01273 628221 Mobile 07968 366783 http://www.albionclinic.org.uk/ There is a new practitioner who took over my old recommendation's, Peter Conway, practice. She is Sabrina Biscardi and can be reached here: http://www.terrasacra.co.uk/ 3) I do not sell herbs or protocols. I recommend woodlandessence.com; sagewomanherbs.com; elkmountainherbs.com; 1stchineseherbs.com; greendragonbotanicals.com, and MontanaFarmacy.com. 4. Herb companies In Canada (they also ship to the EU, as do some of the US companies but they have an easier time of it): Herbies-Herbs.com; and monteagleherbs.com. (Jef Victor Juel Martinussen, via facebook, may be useful for herbs in the EU, try him.)
  18. I think it's great that you've finally found some clues! You may need to find some European Lyme forums to get connected with doctors or with treatment protocols. Some of the advice I can give is limited by geography - such as not being able to suggest sources for herbs. Coxsackie is a pretty common virus, especially in kids. But if it seems you're not able to get rid of it, that could be a result of your immune system fighting other infections and just being too tired/weak to fight the virus well enough to get rid of it. There are a few helpful antivirals that are available in health food stores in the US - l-lysine which is an amino acid, and monolaurin, which is derived from coconuts. I give my kids both, 3x/day, when they start to have cold symptoms. I recently tried one of Buhner's suggested herbs - Lomatium - and have been very impressed. But not sure if it's available to you. I think you'll find the Buhner book very helpful. Once you've had a chance to read it, let me know if you have questions. He suggests a lot of different herbs, but you don't need to use all of them, or even any of them - the book's background on Lyme is helpful all by itself. But if you do decide to use herbs, then Rowingmom is an excellent resource and I've started using a number of his recommendations as well. Have hope! The journey may be hard, but maybe you've finally found the right path!
  19. Don't put a lot of stock in the Western Blot. It's notoriously inaccurate. From what I've read, Elispot/iSpot seems more reliable. Here's something I wrote about Lyme testing that might be helpful - Lyme Testing – All the Lyme tests that are available have flaws. There is no single test you can do to prove you do or don’t have Lyme. But the standard lab tests from labs like Quest Diagnostics or Labcorp are more flawed than Igenex, the lab used by most Lyme Literate doctors (LLMDs). There are two important differences that make Igenex more useful. Western Blot lab tests for Lyme measure whether the body has made antibodies against certain antigens (invaders). When an antibody is made, it shows up as a dark band on the testing material. If a certain numbers of bands appear, you meet the CDC criteria for being diagnosed with Lyme Disease. But what if a band appears, but isn’t dark enough to qualify as positive? This is called an “Indeterminate” band – and it won’t be reported at all by most commercial labs. So if a weak or compromised immune system sees an antigen and produces antibodies, but not enough of them to turn a band “dark enough” to be called “positive,” then you might be told you don’t have Lyme. Igenex reports “indeterminate” bands, allowing a doctor to evaluate lab results in conjunction with clinical symptoms to decide if an “IND” band should be factored into a diagnosis. The second reason Igenex is more informative is that it reports on whether Band 31 or Band 34 showed reactivity. Bands 31 and 34 are thought to be highly specific to Borrelia burgdorferi, the species most commonly tested for Lyme Disease. These bands are omitted by other labs because anyone who may have been vaccinated with LYMERix, a Lyme vaccine that was available between 1998 and 2002, could test as false positive. Rather than screen anyone who may have received the vaccine, most commercial labs omitted these two bands from their tests. But for anyone who never received this vaccine, bands 31 and 34 are highly suggestive for Lyme Disease. Igenex does report bands 31 and 34 and is therefore allows doctors to make better informed decisions on diagnosis and treatments. So if you’ve only run a Lyme test from a local commercial lab and it came back as negative, realize it may not be as reliable as you were led to believe. More detailed explanations can be found here: https://www.lymedisease.org/wp-content/uploads/2014/08/Image13-link-pdf-brenner.pdf (note that this is from 1996, before the vaccine was available, but still one of the best explanations of the Western Blot for non-scientists.) https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/ (this article provides greater details and includes recommendations on labs in addition to Igenex) * These links are old - before iSpot testing. So it's more to let you know why Western Blot isn't reliable than it is to promote any other test.
  20. I think removing antibodies - which is what plasmapheresis does - would be the worst thing you could do with Lyme and co-infections. You need the immune system to have T cells that can fight these infections. You don't want to strip them away, making the body start all over again. I know you might be thinking that pheresis also gets rid of auto-antibodies. But the better way to handle this would be to help the body reduce inflammation and hep close the blood brain barrier. For bartonella, I've found arginine - an OTC amino acid supplement - to be very helpful for symptoms, especially fatigue and pain (500 mg 3x/day). I've also found Japanese Knotwood helpful for inflammation (1/2 tsp 3x/day). And Red Sage is very helpful for Pans symptoms http://latitudes.org/dan-shen-become-important-treatment-pandaspans/ For anger, 50-100 mg of niacinamide (flush-free niacin, which is vitamin B3) is really helpful. Calms my kids down w/in 20 min. And 3000 mcg of sublingual adenocobalamin (a form of vitamin B12) pretty much cured enuresis here. https://www.hindawi.com/journals/isrn/2012/789706/
  21. Wombat - I don't know of there's an easy answer to your question about boosting the immune system. Some people would agree with you and say that activating the immune system in someone who has an autoimmune disease is a bad idea. Others would say that if that autoimmune issue is caused by an infection, then activating the immune system would ultimately be a good thing, albeit a course that held risk for lots of inflammation while your body fought the infection in a more aggressive manner. One approach would be to take things that helped your body fight inflammation for a time and then, keeping those things as part of your daily routine, you could then slowly add things that boosted the immune system. If you started to feel worse, you could then back off the immune boosting piece or you could increase the things that reduced the inflammation - or both.
  22. Gpookie - Wombat is having an anxious reaction to a particular word used in Ryan's post and it triggered anxiety around similar word I used in my post. I've edited my post accordingly.
  23. Wombat - congratulations on getting tested!! That's a huge accomplishment! I hope it pays off for you. In terms of herxing, there are really two separate issues. A true "herx" is a body's response to the neurotoxins that are released when certain bacteria die - a kind of chemical warfare the bacteria launches as a last ditch attempt to ward off threats. Lyme bacteria when it's in it's spirochette form can do this. For this true herx, you focus on helping the body remove the toxins - using things that support what's called the trans-sulfuration pathway - n-acyetl-cystiene (NAC), CoQ10, glutathione, or glutathione precursors. This is like the garbage truck in the body. http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html Then you add binders - bentonite clay, charcoal, chlorella - that will bind to toxins in the large intestine and help them be passed as a stool rather than be reabsorbed back into the blood stream. Binders need to be taken 2 hrs away from medications or probiotics or supplements. They bind to everything - not just bad stuff. So you don't want it binding to meds or nutrients. Then there's the second issue - what's often called a herx, but is really more an inflammation issue. Whenever your body is waging war against an invader, it's going to produce inflammation as a way to call in certain T cells and as a way to make the terrain less friendly to the enemy. This makes you feel like crap and people often call it a herx. But that way to fight this type of response is with anti-inflammatories - steroids is the sledgehammer in this category. Ibuprofen and NSAIDS are gentler. Herbs are kinder still. Addressing inflammation can bring all sorts of physical and neurological relief. I highly, highly recommend the books by Stephen Buhner on using herbs instead of or in conjunction with pharmaceuticals. Most of the herbs he recommends fight inflammation in addition to being antibacterial and/or antiviral and antifungal. By far the two most helpful for my kids are Japanese Knotwood and Red Sage http://latitudes.org/dan-shen-become-important-treatment-pandaspans/ Buhner advocated for using herbs more so than antibiotics for a number of reasons but aside from germ resistance against antibiotics and what antibiotics do to the gut, he cites evidence that antibiotics tend to force Lyme into the "round form" or cyst form, which makes the bacteria almost impervious to antibiotics, whereas herbs don't seem to force Lyme into its cyst form, making it much easier to kill. He makes a compelling argument in his books and I've come to really share his views. But have found that while herbs are awesome for inflammation, we have needed antibiotics in addition to herbs to get the job done for Lyme. Still, I know some people who've had success with just herbs (Rowingmom being one). Whether you use herbs or antibiotics or both, you definitely only want to introduce one thing at a time and wait a minimum of 4-7 days before adding a second or third element into your treatment plan. Otherwise, if you have a negative experience, you won't know what new thing caused the bad response and you have to stop everything and start all over. Both Buhner and Cowden (who has his own preferences of herbs and detox supplements) focus on inflammation and detox before you worry about killing bacteria. Inflammation can be as big a problem for symptoms as the infection itself. So while you wait for test results, you could start using some anti-inflammatory herbs to help the body feel better. I'm sorry I can't give you a resource to get the herbs. The source I use in the US doesn't ship internationally. But there may be resources listed in the European edition of Buhner's books or you may be able to find local sources. But start with Buhner's Healing Lyme book and consider his book on Bartonella (since this co-infection is notorious for mental health issues). It may require more focus than you're able to give but maybe your family can assist. Good luck!
  24. I'm sorry - I don't know your history, since I'm not on this forum very often anymore. But I've been a Pandas mom for 8 years, with my now 14 yr old son having battled strep and Lyme (fully recovered now) and my 12 yr old daughter currently fighting some chronic infection - possibly Lyme and Bartonella. Here is my personal experience - when my son was treated only for strep, with one antibiotic, he could never sustain remission. He had a tonsillectomy, plasmapheresis and IVIG over the course of 2 yrs. But then we found Lyme and he was treated with combo abx (a variety of augmentin, azithromycin, rifampin, tindamax, omnicef - 2-4 different abx at once). It took 2.5 yrs of Lyme treatment, but he fully recovered his health and no longer struggles with any Pandas/Pans mental health or neurological issues (previously had tics, OCD, anxiety, rage, adhd, brain fog, muscle pain). He's been symptom free and off all meds for 3 yrs. About once every winter, he'll catch a bug that's going thru school and feel a little "off" - maybe a hint of OCD or an eye tic. He'll take 10 days of one antibiotic or some antibacterial herbs (depending on how physically sick he feels, fever etc). And it all goes away in that first week. So he may have a tinge of Pans left if he gets a bacterial infection, but for all intents, he's back to 100%. In his case, a Pandas specialist (we saw 2 without lasting success) couldn't get him well. But his LLMD (who has since become a Pans specialist as well), treated the Lyme and that took care of the Pans. My daughter's case is more complicated and I'll skip the long story. But the short answer is she's having the same experience. Treating with one abx didn't make a dent. Treating suspected Lyme/Bartonella is making a big difference. Combo abx (azithromycin and bactrim for her) make an important difference. But she also sees big gains from treating inflammation (herbs recommends in Stephen Buhner's books on Lyme and co-infections). Her anorexia lost it's hold on her, her panic attacks have stopped, her brain fog is much better on most days. So in my opinion, treating the triggering infection - whether it's strep or Lyme or something else - is what you need to do. Pandas is strep triggered. Pans can be Lyme triggered. But the mental health symptoms go away only after you get rid of the triggering infection. In my experience, few Pandas specialists understand Lyme well enough to be of much help when it's part of your picture. But LLMDs end up helping with the Pandas/Pans whether they call it Pans or call it neuroLyme - it's pretty much the same thing from a practical standpoint. Also, Dr K does NOT believe that Lyme is an issue in Pandas and he is unlikely to be much help if Lyme is in your picture. If you have an LLMD you like, maybe ask him/her if they'd be willing to do a phone consult with our LLMD for some insights into how Pandas impacts Lyme treatments. Our LLMD is on the board of ILADS and our state board of health's Panda Advisory Board. And he's been treating both conditions for many years. He's generally willing to consult with other doctors over the phone (tho I'm not sure if he charges for this - I never needed to ask). PM me if you want his contact info. Good luck!
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