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Posts posted by LNN

  1. Rachel,

    I don't have any personal experience with SAM-e. Like Nancy, I've always seen it associated with boosting seratonin, which is something you say you don't need. I don't see anything in his genetics that would make it a no-no and in that case, you could always do a trial of it and see what happens. Another option is to ask your doctor to measure his SAH levels. Google Dr William Walsh and SAH - he determines whether someone is overmethylating or undermethylating based on this blood measurement. If an undermethylator, he recommends SAM-e


    You don't say what your son's condition is or what symptoms you feel might be improved. So it's hard to give any advice. The one thing I might suggest is that you and your doctor reconsider the NAC supplement. Some people with CBS mutations don't do well on NAC. It makes my DD very very flipped out mood wise and when I took it for a month as a mucus thinner recovering from bad cold last winter, it seriously elevated my liver ALT and AST results (I also have CBS +/-). It also made me depressed. When I stopped the NAC and re-tested the liver a month later, things had returned well into normal levels.


    Sometimes I've found that removing things can be as helpful as adding things.

  2. With all the abx she's on, it sounds like the congestion may be viral. Viruses can also triggers PANS symptoms but hard to say whether adding an anti-viral is needed. If it were me, I'd give lots of Vitamin C (we take 1000mg daily), zinc (30mg or zicam 3-4x/day), l-lysine (500mg 2x/day) and vitamin d if she tolerates it (not all kids do well on Vitamin d supplements). All are available at a local grocery store or health food store. These are my go-to supplements when cold symptoms appear. Since she's already congested, they probably won't stop things dead in their tracks but may shorten the duration of the cold and help her not get as sick. If she's still getting worse on Monday, call Dr M and get his thoughts. Good luck!

  3. If it's any comfort, your story sounded like mine in many ways. Sudden onset changes, passionate rages, temporary improvements, feelings of despair...you'll find lots of parents here that understand what you're going through.


    My son got sick when he was 5. It was probably triggered by a known tick bite on his scalp that we didn't pay much attention to (something I deeply regret in hindsight). We saw erratic behaviors, extreme anxiety, OCD - but didn't know what to make of it. Then he got better for two months and we shrugged and moved on. Then he got strep and went off a cliff. We asked about Pandas, asked for antibiotics beyond the 10 days prescribed and were told Pandas was controversial and the 10 days would've done the trick if it were Pandas. Then we were offered Prozac, Tenex, Haldol and Risperdal - for a 6 year old! Fired several doctors and pleaded with sympathetic walk-in clinic nurses for 10 days of antibiotics when things got awful. We then spent 3 yrs seeing Pandas experts, using long-term antibiotics, prednisone, tonsillectomy, plasmaphersis, IVIG - all helped but only temporarily. We could get him better but couldn't get him to stay better. A standard western blot lyme test was negative. But we finally used Igenex to test for lyme and that was our missing piece.


    We started seeing an LLMD (lyme literate MD) and within 3 weeks of using a combination of antibiotics (abx), rather than monotherapy abx (only one abx at a time), we knew we were on the right track. it took 2 more years to get rid of the lyme because he'd had it for so long, but while there were setbacks, we saw progress that he was finally able to sustain. In my son's case it was both lyme and Pandas that we had to treat. He's done with lyme treatment but will still have a Pandas response if he gets a bacterial infection. But we put him on abx at the first signs of symptoms and he's usually back to normal w/in 2 weeks now - a far cry from the old days.


    Given that your daughter has known deer tick bites, I'd urge you to go to the top of the Pandas/Lyme forum home page and scroll down to the Pinned Thread for Lyme and read thru them, especially the links to articles about lyme testing http://latitudes.org/forums/index.php?showtopic=10804. In lyme literature, you won't see the neuorpsych symptoms discussed much, which makes it seem like your kid can't have lyme. It doesn't seem to match. But the reason Pandas was renamed to PANS a few years ago was because many of us were finding that our kids had Pandas except that the trigger was lyme, or a virus, rather than strep. There's also research showing that lyme and strep share some proteins so that they look like the same invader to a confused immune system. One protein in particular - an M protein - is also present on cells in the Basal Ganglia of the brain (thought to be the target in Pandas and sydenham's chorea) and in cells in the aortic valve (which is what causes the immune system to attack the heart in rheumatic fever)


    With your daughter's intense rages and chronic struggles and tick bites, I'd put lyme testing at the top of the list. You may want to start a new thread asking for Lyme friendly doctors in the VA/NC area or go to Lymenet http://flash.lymenet.org/scripts/ultimatebb.cgi and ask for referrals for a pediatric LLMD in your area. Kids are not adults in little bodies. They require a doctor with a pediatric background - and they are hard to find! You may need to travel farther than you'd like - and most have waiting lists of 3-6 months. None take insurance because they feel they need to spend more time with a patient that insurance will pay for. But you pay out of pocket and then submit your own claim to insurance and sometimes you can get reimbursed at the out-of-network rate. In the meantime, you can try to get a local dr. to order the igenex test for you.


    You can also try to have the ASO/AntiDNase B titers done, but since your daughter was already negative once, it may not be positive even if she has active strep. Some kids, like my son, don't produce a positive titer test even when you know they have strep (he had a positive throat swab but negative titer test 3 weeks later). Because treatment for chronic lyme is long-term combinations of abx, if strep is a part of the picture, you'd be tackling both infections. But simply treating strep w/one abx wouldn't be sufficient to treat lyme. Some people have also treated successfully with herbs, but the first step would be to see an LLMD and get appropriate testing.


    One reason your daughter may have temporarily improved on vitamins is that any chronic infection will deplete the body of resources. Vitamins and supplements become really important, but aren't enough in and of themselves to keep the body in a good place. Antibiotics are needed to help the immune system get the job done.


    It took 5 yrs, but my son is now a very happy, healthy kid. He went from having a teacher think he was autistic and cognitive testing at borderline below normal to someone who's lowest grade is a B+ and is testing above normal. Rages are gone, OCD is gone, life is good. It's a matter of finding that needle in the haystack and getting the right doctor to help you on a long journey. PM me if you'd like to talk offline.

  4. I believe there's a Panda-friendly doctor in the Charlotte area - you can check the thread "Doctors who've helped us" that's pinned at the top of the list of discussions. You may also want to look for an osteopath, who tend to be of the same mindset as naturopaths except that they have MD's and can prescribe antibiotics and other medications if needed, which a naturopath can't.


    The tests you describe are these:

    1. ASO and Anti-DNase B antibody titers

    Here's Quest Diagnostic's descriptions that you can print out for a doctor: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=265 and http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=256


    2. Mycoplasma pneumonia Quest info: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=34127 or this test http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=15498


    3. Anti-Roseola - couldn't find info on that one.


    4. Mono - is caused by the Epstein-Bass Virus (EBV). The Quest test is: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=6421 The problem with this test is that once you've had the virus, certain markers will show positive for life, so it doesn't prove there's an active infection. 95% of us have had EBV at some point in our lives, so this isn't a great test unless you get a positive on the marker that shows early infection (IgM). So you might be better with this one that looks for DNA of the virus: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=34179


    5. Coxsackie - Quest test: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7656


    6. Lyme - the test Dr T or most any other doctor you might see locally is pretty useless because the widely used test doesn't look for the two markers that are unique to lyme. The lab most of us here have used for Lyme is from Igenex. You may have a hard time getting a doctor to sign the order form, but it can be signed by anyone with who can call themselves DR - a chiropractor, a naturopath (not sure about a dentist). It won't be covered by insurance and is $200 but you can submit your own insurance claim and might get reimbursed at the out-of-network rate (but you'd have to pay up front). Dr T feels Lyme is only present in about 1% of Pandas kids, which anecdotally from the moms on this forum, is simply untrue. At least a third of the parents I've met on the forum have found lyme to be a factor. You may want to list your daughter's symptoms, but if they include brain fog, rages, muscle or joint pain, frequently swollen lymph glands, vision issues or light/sound sensitivity or other things that don't appear on NIMH's list of traditional Pandas symptoms, then Lyme may be worth considering. If you decide to test, the test I'd start with is Basic Panel 4090 http://www.igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf and you can find additional info at www.igenex.com


    7-8 - Thyroid Panel - this will screen for several thyroid measurements. Quest test: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7444

    For help understanding thyroid tests an symptoms, you can start with www.stopthethyroidmadness.com The owner of the site is a bit angry and definitely has a bias, but it's a good place to get a lot of information from one place.


    9. Lupus - Some parents have had this test and seen results that were alarming, yet their kids didn't have lupus. Pandas can trigger some of the markers seen in lupus. Personally, I'd only test if your daughter had any lupus symptoms. However, lupus is a serious disease, so depending on your financial and insurance situation, you may decide to test.


    10. B12/Folate - not sure if this means a blood test to check B12 and folate levels. It's not a bad measurement to have provided you work with a doctor who's willing to do follow-up testing and knows how to treat any abnormal results, which would indicate one roadblock in methylation. The quest test is http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=7065 If you get an abnormal result, you can post in a new thread and some of us can help you with follow up suggestions.


    11. Pneumoccocal titers - this tests the immune response to the pneumonia vaccine your child probably received as a toddler. It can be used to see if the immune system responded correctly and if the vaccine provided some immunity. if your child doesn't mount a robust response, then you can re-administer the vaccine, run the titer test a second time and possibly build a case for insurance to pay for IVIG, arguing that your child is immune-deficient. The problem is that it requires re-vaccination, which does carry some risk for a flare with some Pandas kids, particularly if they have some current or chronic infection. For me, this test didn't give particularly helpful info for the cost. But again, depends on your situation. The Quest test is http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=19564 if your child had the vaccine against 14 pneumonia strains or http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=19563 if your child is older and only had the vaccine against 7 strains.


    I list the Quest links because Quest is a national lab. But you don't have to use them. Labcorp and regional labs would have equivalent tests and you could print these links out and let your doctor order from the lab s/he prefers.


    If you do end up having to go to a different doctor, they may or may not be willing to order all these tests and you may or may not be able to afford them all at one time, depending on your insurance. So my personal opinion on which ones I'd do first goes like this: 1, 2, 6, 10, 5, 4, 7/8, 3, 9, 11 But I have no medical background and don't mean this as medical advice. Just the opinion of a mom who's spent too much time on this forum.


    You may want to post your daughter's primary symptoms, her age and how long things haven't been quite right. Sometimes, people can brainstorm and share their own experiences with similar issues. And don't feel bad about diets - we could only survive 9 days of gluten free, GAPS would never fly here either.

  5. This seems to be a common issue among some of his patients. If you search the forum archives (search bar is in the upper right corner of the page) under "Dr T" you may find previous discussions on the matter. The forum generally tries to avoid doctor bashing and if this thread turns too negative, it will likely be locked at best or taken down at worst. So if others have strong feelings, it's best they contact you via personal messaging (again, look to the upper right corner under your login name to access your mailbox).


    Many doctors seem to have polarizing effects on the Pandas parents - some love a particular doctor and get defensive when shortcomings are pointed out, while others feel compelled to share their negative experiences as a warning of sorts. The complaint about not being able to contact a doctor for follow up is a common one not limited to this doctor. But that doesn't excuse the behavior. You paid for a consult and were given a promise directly from him that he'd get back to you with instructions. You are not asking for something you didn't pay for or that he didn't offer to provide. Enough time has passed and you're entitled to the guidance you have a right to expect, IMO. I would call, every day if necessary, Stay professional and respectful but also persistent. However, if it proves to be too much work to continue the relationship, then it may become time to consider other doctors.


    In the 6 years I've been on this journey, I worked with 3 different specialists and had passing conversations (at conferences) with two others until I found the right partner. Each has their strengths and weaknesses. This is a bit like dating - a matter of finding the best fit. Each doctor has a different perspective on this disease and how wide a net they're willing to cast in terms of testing and treatments. The right doctor for you will be the one who's willing to look in the right place, given your daughter's symptoms/history.


    I would continue to contact Dr T for further guidance/lab slips but also clarify whether there will be a charge to review the results, or ask if the results can be sent to your family physician. If you ultimately decide to seek another doctor, you may want to post the things you're looking for - do you want mainstream or integrative or naturopath or homeopath? Do you want someone who can do IVIG? Do you want long term antibiotics or would you prefer to use naturals? What geographic area can you travel to? Then people can message you with their own experiences.

  6. If you're told a facility or doctor doesn't support Pandas, it means they won't use antibiotics as part of their protocol. I don't think there's a quick cure for Pandas/Pans. But I do think there are many things you can do to restore health and reduce the chances and severity of future flares. But my best advice is to work with an integrative doctor who's Pans friendly rather than wasting time and money chasing a quick cure. This is a marathon, not a sprint.

  7. Yes, glutathione is a really important part of detox. Here's an article you might find helpful: http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html


    I think of detox as any past of the body's garbage/sanitation system. For starters, you have the two main waste treatment plants - the liver, which is like the garbage dump and the kidneys, which are like wastewater treatment plants. When you take lots of meds, your body has to work a little harder processing these and eliminating the waste left when the active ingredients of the meds are absorbed. But they also have to work harder when your body needs to eliminate dead cells (from the self and from invaders), toxins in our foods and environments (chemicals, metals, molds, allergens). So anything you can do to support these organs can be beneficial - e.g. drinking lots of water - is generally a good thing.


    However, as Rowingmom points out, some supplements that are generally "good" for the body - SAMe or milkthistle for the liver, NAC, alpha lipoic acid, B6 - for increased glutathione - can't be handled by individuals with certain methylation defects. If you're an "overmethylator" than SAMe won't agree with you. If you have a CBS gene mutation that's active/expressing, then you need to avoid NAC, alpha lipoic acid, Epsom salts and milkthistle because of their sulfur content. If you have a CBS mutation, you need to take the P-5-P "version" of B6 and not regular B6. Having an active CBS mutation makes detox much harder. So while detox is good for everyone, how you get there is a unique path.


    Many people also support detox by taking binders - things that bind to bad stuff as it's making the journey thru the bowels, to make sure it gets eliminated and not reabsorbed thru a leaky gut. Charcoal, bentonite clay, chlorella - are all talked about as aids. My personal experience is that charcoal did very little, tho it's a go-to in ERs for poisonings, so obviously it does have some effect. But a nurse once told me to be careful with prolonged use b/c it can mess with your electrolyte balance. Same with clays. I didn't like chlorella for 2 reasons - DS had to take 45 pills/day - 15 three times per day - which was a huge reinforcement to him that he was "sick" and I think it did little for detox. My second concern with it is that the majority of it comes from the China Sea, which was impacted by the nuclear accident at Fukushima 3 yrs ago. I can't get behind giving something that could be tainted with radiation as a detox supplement. JMHO.


    We use magnesium (doses that produce daily BMs but don't cause loose stools - which for my kids is 200mg/day). We use P-5-P and psyllium husk and lots of water. My DS has issues with mold, which peak in the fall and during raining weeks in the spring. So we periodically use cholestyramine when it's this time of year and he develops PANS symptoms like hyperactivity, eye tic and such. The cholestyramine works great for the eye tic, not as much for the hyperness, but then, I'm conservative in dosing.


    Can't imagine getting my kids to imbibe vinegar :huh:


    You also asked on another thread about CPY450 - we did get this info via our 23andMe testing and our LLMD did say he'd have used the info to adjust medication/antibiotic dosing, but at that point, we were pretty much done with medications. But knowing the status of the different liver pathways will help you increase or decrease standard dosing levels for a given medication, so it's a helpful piece of info to have.


    As far as overall methylation, which I fund to make a huge difference in my kids, this introductory article may help when it comes to understanding how detox and methylation are intertwined...http://autismnti.com/images/Website-_Yasko_Education.pdf

  8. I know this doesn't address the questions you've asked, but if your DD has been battling this for 7 yrs and never feels "good" then it really raises a red flag to me that there's something - infection, environmental (e.g. mold), nutritional (e.g. methylation issues), that hasn't been tackled.


    You sound like a mom who's really done everything to advocate for your child and I don't want to sound like I think every kid has lyme. I don't. But you mention who your dr is and I know he feels that lyme is not an issue for most of his patients, despite the high prevalence of lyme in the northeast and the large number of Pans families who've not recovered with "just" Pandas treatments and then went on to get better with lyme treatments. He also relies on a standard western blot, which is not a good test. Pandasnetwork.org has posted something written by your doctor on his lyme views which are 180 degrees opposite of my own experiences over the past 6 years. Of course I'm not a doctor. Don't mean to suggest I have more answers than anyone else. But...if someone says after 7 years of a diagnosis that they never feel good, and their lives (and the family's) are still being turned upside down, then something is not right.


    I think Nancy has given you some great insights (as always). But if you're only relying on this doctor's rule out of other known Pans triggers, I really hope you'll consider another opinion. Maybe it's not lyme, but it sure sounds like some stone still needs unturning. This doesn't sound like a strep-only problem.

  9. This Time Magazine article on Tumeric's neuro-regenerative properties might be of interest http://time.com/3442195/this-curry-spice-might-help-the-brain-heal-itself/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+time%2Ftopstories+%28TIME%3A+Top+Stories%29


    Many on the forum use tumeric in the form of Enhansa by Lee Silsby http://leesilsby.com/enhansa-homepage but you can also get forms of tumeric OTC.

    High doses of Omega 3s can also help with excessive brain inflammation and CoQ10 is known to help restire the myelin sheath around nerves.

  10. mehtylation involves 30+ genes. MTHFR is only one of them. They all affect neurotransmitter balance in one way or another but COMT, MAO and VDR Taq play a greater role and CBS affects detox and biotoxins can certainly play a role in depression as well. Neither my son nor I have any MTHFR mutations but we both benefit mood-wise from higher or lower doses of vitamins/minerals than we used to take in a multivitamin. For my kids, it was a big factor in moods, for other people, not as much.


    But don't feel pressured to start pyshc meds because "authorities" want you to or because they're your only option. I'm not ant-med. They have a place for severe situations and I'd never want a kid to suffer unnecessarily. But as Nancy says, Pans kids often need far lower doses (there are research papers on this) and sometimes addressing methylation can fix things rather than bandaid them. So just suggesting an alternative so that you know you have options.

  11. I too read the story about the 9 kids in Colorado but I'm sceptical that if only 50% of the kids have enterovirus 68, that alone would be the culprit (tho I do realize testing may not be 100% and like you, agree it may be a combo of infections/vulnerabiltiies). I'm glad to hear they're testing thru Igenex - your cousin may want to call them and ask to speak to one of the doctors on staff to mention his visit to Colorado - they may be aware of TBIs and other infections in that area that could be tested for.


    As for his current doctors, I'd fire any doctor who told me to give up and accept paralysis and a life of tubes for my child. I'd be scouring the net for doctors who specialized in vector-borne diseases and try to connect with the team that's working on the 9 Colorado kids. I'd also email Pam Weintraub, author of Cure Unknown and a number of excellent articles on mystery illnesses. She may know how to contact some of the best minds in the field who are open minded to things. http://www.astralgia.com/

  12. If you're uneasy about adding meds and decide to stop things, I'd suggest stopping only one thing at a time. If you stop everything and she tanks, you won't know which thing was responsible.


    However, if bloodwork shows signs of an active infection, you may want to continue with antibiotics/antivirals and instead of adding pysch meds, look into the topic of methylation. Methylation is a process that does many things, like create cell energy and promote cardivascular health. But it also helps maintain neurotransmitter balance and if you have a nutritional deificiency or a genetic issue that intereferes with this process, you can end up with a chronic mood issue. Once I understood where my kids had genetic roadblocks in their methylation processes, I was able to give them specific doses of vitamins/minerals and help them re-gain mood balance. (the solutions for each kid were very different).


    Even my son, who struggled with chronic lyme and still has a Pandas response to bacteria, has seen significant improvements in anger/anxiety/focus that we couldn't achieve with antibiotics alone. You can go to the pinned threads at the top of the forum called "helpful threads" or something like that for a post from me that lists links to read up on (I think it's post #17 or 18). This is also a good primer http://autismnti.com/images/Website-_Yasko_Education.pdf Pay paticular attention the the section on the BH4 cycle.

  13. Yucca is estrogenic - not something I think any child or woman should be taking IMHO. I don't recall if different parts of the plant vary in their estrogen properties and maybe some parts are safe. But when I came across that tidbit, I scratched off my list of things to consider. Again, double check my rsearch. It's been awhile since I was waist deep in this stuff. But wanted to flag it for you.


    Better to restrict (not necessarily eliminate) as many sulfur sources of intake as you can and support the body in other ways. I've taken to not only researchng the pros of a supplement but also the cons. When I took NAC for 3 months before I cound I was CBS+/-, I became depressed and couldn't figure out why. As part of a routine physical, my dr found my liver panel was way high. I stopped the NAC, my depression lifted and my liver panel came back to well within normal - all within a month. No matter how many good things NAC does, it wasn't right for me. So now I try to know the good, bad and ugly.

  14. CBS should be treated first - absolutely stop the NAC and restrict sulfurs like garlic, quercetin, sulfa abx...Now, personally, I don't think restricting all proteins from kids is a good idea. So taking molybdenum (150mcg daily or a little higher depending on diet) can help. Some people pee on sulfur stips to monitor levels. I just go by the smell of the urine. If it has an acidic or sulfur smell, I take some molybdenum and if it's still there, I take an extra moly dose.


    Then move on to MTHFR - I highly recommend using Yasko's liquid methylfolate rather than any capsule. The capsules start at 400mcg and some kids need a much lower dose than that. The liquid drops allow you to start at one drop (67mcg) and build up slowly until you find the sweet spot. Here's the product: http://www.holisticheal.com/methylmate-b-nutritional-supplement.html


    You also need to give B12 daily along with the methylfolate but don't assume Methyl B12 is best. Some people feel best on methylB12 and others prefer hydroxyB12. You need to do a trial and see which makes him feel better. For methylB12, I like http://www.amazon.com/Source-Naturals-MethylCobalamin-Flavored-Sublingual/dp/B001G7R8J2/ref=sr_1_1?s=hpc&ie=UTF8&qid=1411676324&sr=1-1&keywords=source+naturals+methylcobalamin+vitamin+b-12 and for hydroxyB12 I like http://www.amazon.com/Perque-Activated-Guard-trade-lozenges/dp/B006UKGDOQ/ref=sr_1_1?s=hpc&ie=UTF8&qid=1411676366&sr=1-1&keywords=perque


    My kids find it hard to keep the tablet under their tongues w/o playing with it while it dissolves. But if you swallow it or dissolve it and then drink it, it doesn't do much good. My DD's B12 blood levels only moved up once she learned to let is dissolve sublingually.


    For MAO - My understanding is that MAO mutations inhibit/down regulate MAO. Copper can make MAO run a little faster (upregulate). But I've had someone on FB argue with me that the MAO mutation means you're already running fast. That goes against what little research I've been able to find and I find copper helps my DS who has an MAO mutation. But do your own research. I'd hate to steer you wrong. I also believe that if you have MAO, you should avoid and MAO-I antidepressant and any OTC cold meds/cough meds that carry a warning to note take if you're on an MAO-I - since these OTC meds work the same way as an MAO-I and you'd be compounding the problem. Do test copper levels first if you decide to try it. Copper/zinc are ying/yang and both play an important role in neurotransmitter regulation. Zinc is also important to the immune system, so you need balance between these two minerals.


    I don't treat my family's MTR and MTRR issues directly, They just get helped by the things we do for MTHFR and from taking B12 (two of us use hydroxyB12 ans two take methylB12).


    You're right on the Vitamin D - he may not need extra. But if you live in a northern climate, he may still benefit from a lower dose of D3 (e.g. 1000 IUs) either daily or a few times/week. D3 is really important for immune strength and for sleep. You can test thru blood work and decide from there.


    These are my go to resources:

    http://www.heartfixer.com/AMRI-Nutrigenomics.htm (scroll down below the diagram - it's a 50 pg document)



  15. if it makes you feel better, I too joined in 2009 and am on my 3100+ post - so you're not alone. I agree with SSS- push for a minimum of 4 weeks of doxy and keep him out of sunlight. But you may want to get on the waiting list of an LLMD so that if a few months from now things still seem wonky, you're already on someone's list. You can always cancel a week before your apt. Go to lymenet.net to ask for dr recommendations near you - or ilads.org


    Lyme is a nasty beast and you really need someone with experience to help you - someone who's seen it all before. Getting with the right dr made all the difference for DS. Get yourself to a good LLMD. Once you get over the sticker shock, it will be well worth it.

  16. My kids just got over colds. For us, the best remedies are lots of zinc (20-30 mg at breakfast and 20-30mg at bedtime), or Zicam 4x/day if that's easier for you. plus l-lysine 500mg 1-2x/day, plus 1000mg vitamin C plus 1000 IUs of Vitamin D3 (tho some kids have trouble with D3 supplements). Colds were gone in 3 days, where they used to last 7-10 days.

  17. Omnicef caused a significant lyme herx in my son, even after being 3 yrs on mono-abx for Pandas and being on 3 combo abx for 9 months prior. It crosses the BBB. Like rowingmom, we see tics when biotoxins are a problem - too much toxic die off from bacteria, high mold count in the air, mildew in a room, yeast....cholestryamine is helping more than anythiing else we've used, but I doubt this is in dr B's protocol.


    If he has no signs of a sinus infection, I'd be reluctant to pursue the steroids personally. But you can try it for 2-3 days and see what happens. When my DS was flaring due to Pandas, steroids helped immensely. When it was lyme, steroids made him antsy, hyper, angry and aggressive. two very different responses based on the trigger. So you might know quickly whether it was the right thing to do.

  18. This is a good article on explaining the biotoxin pathway and why mold toxins cause more trouble for some than others http://www.survivingmold.com/diagnosis/the-biotoxin-pathway and this one http://betterhealthguy.com/images/stories/PDF/Townsend_Mold_Mycotoxins_Overlooked_July_2014.pdf


    If your child is sensitive to mold toxins and has trouble clearing the toxins, then the focus is on both removing the source of the mold AND removing the toxins from the body. Apparently, mold toxins can stay in some bodies even after the source is gone and will circulate around until you help it clear. To do that, I've come across three strategies.


    One is to take things that help the liver work more effectively - supplements like milk thistle can help upregulate certain liver enzymes/pathways provided you aren't allergic to ragweed (milk thistle is in the ragweed family) or aren't sensitive to supplements high is sulfur. Water and lots of fluids also help detox via the kidneys.


    The second one is to ingest binders - things that bind to toxins within the intestines and are excreted rather than letting those toxins get reabsorbed thru a leaky gut back into the blood stream. Binders include activated charcoal (1-5 capsules/day taken away from all medications and supplements), chlorella (10 capsules/3 times per day away from meds), psyllium husk, and cholestyramine - a cholesterol-lowering drug that binds to bile during digestion and also binds to toxins in the process. The first 3 are OTC and cholestyramine is a prescription.


    Third, you can take supplements that increase the body's production of glutathione - a major antioxidant. These include alpha lipoic acid, vitamin C and n-acetylcysteine (NAC). But if you are sulfur-intolerant, alpha lipoic acid and NAC should be avoided (sulfur intolerance can be determined thru experience or by genetic testing thru 23andMe).


    Finally, in addition to detox, you can also focus on reducing inflammation. Motrin 3x/day, resveratrol (an OTC supplement), curcumin (great for some kids, not tolerated by others) and some other herbs. Epsom salt baths help some people as well. And of course, time. Support the body, remove the insult, and give the body time to heal.

  19. LabCorp is the lab that does the HLA-DR testing and they don't have any labs in CT outside of Fairfield County. So Dr M's office doesn't have an arrangement for the lab to pick up samples at his office the same way Quest and Clinical Labs do daily pick ups there. And another commercial lab isn't going to do a blood draw for a competitor and courier it to them. So you have to drive to the closest LabCorp site, which for us was Hamden but you can go to their site and see if they have other labs closer to you.


    I suppose you could also have your other labs drawn while you were there, but you'd need a new lab slip specifically for LabCorp- every lab requires the doctor to order labs on that lab's order form. They don't draw if the request is on another lab's order form because they all have different codes.

  20. I hear you on needing to attend to the rest of your life, but unfortunately, there are no cliff notes on the mold and methylation topics, because you need to know your child's unique responses in order to come up with a game plan. You can start by thoroughly reading Shoemaker's website http://www.survivingmold.com and searching Better Health Guy's website on the subject of biotoxins. And this primer on methylation http://autismnti.com/images/Website-_Yasko_Education.pdf


    But you need to know your DD's genetics before being able to make a plan. Guessing wasted a lot of time for me and put my kids on an unnecessary emotional rollercoaster as I played mad scientist (at the time, 23andMe was $400 per test and it was unaffordable). But now it's only $99. I'd spend the $ and do 23andMe - it got my kids from 85% to 100%. I'd also ask Dr M to do the blood test to find out your DD's HLA-DR gene status (covered by insurance). Unfortunately it needs to be run thru Lab Corp and the closest lab to us was Hamden - they're mostly in Fairfield County. But it was worth the long drive. Dr M has a good handle on mold issues. But without knowing how the body can handle toxins (which is what the HLA-DR gene test tells you). it's just a crap shoot.

  21. Sometimes, it's more than Pandas contributing to mood issues. Some people have genetic and dietary contributors that also affect neurotransmitter levels. So it could be that treating your Pandas will help with a large percentage of your issues but you may need things beyond Pandas to get you to a place of good mental health.


    One of the major pieces of my kids' puzzles has been methylation. Methylation is usually described as a process that fuels the body's energy and detox systems. It creates ATP - needed for cell energy, and it feeds the transsulfuration system - the body's garbage removal system. But it also creates SAMe and greatly influences regulation of serotonin and dopamine. Sometimes, our genes that regulate dopamine are hampered and taking certain supplements or avoiding certain foods can help us regain a better level of balance. It's an interplay of 30+ genes, not a matter of one or two genes.


    There's a free webinar coming up that may be of interest : http://latitudes.org/forums/index.php?showtopic=23001

    And here's a simple overview of methylation http://autismnti.com/images/Website-_Yasko_Education.pdf


    Treating genetic roadblocks helped my DD get rid of bipolar symptoms and helped my DS lose his anger issues and greatly calmed his anxiety. The MAO gene is a big contributor to depression, so it may be helpful to know the status of your MAO gene. 23andMe tests for this gene and you may be able to test it thru a lab like Quest - something to look into perhaps.

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