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Posts posted by LNN

  1. FWIW, at 7 months into lyme treatment (and 2.5 yrs on single abx for Pandas), DS was only at 75% baseline. But that was an improvement from the time we'd started (maybe 60% baseline). So with all you've done I too would be looking for signs you were on the right track but also realizing it's a very long haul. It took us 2.5 yrs of combo abx to be at a point we could stop abx altogether.


    Are you pulsing tindamax? If it's one you're still using, maybe take a holiday. Tindamax was brutal for DS and after only 5 weekends at 1/2 dose, he was in a constant herx that brought tics back in force. We stopped the tindamax and it was like the sun coming out after a hurricane. Cefdinir also produced a strong herx, as it crosses the BBB - lots of emotional outbursts. So consider rotating, pulsing or taking a break from one or more abx for a bit.


    I agree with your LLMD that mold can be a giant money suck and testing is ambiguous. But I found the blood work that Shoemaker lists somewhat helpful http://www.survivingmold.com/diagnosis/lab-tests - we didn't do all of them. Our LLMD did the ones he felt were most helpful regarding inflammation.


    In terms of environmental testing, we didn't have the budget for a $400 ermi test that wasn't going to tell us specifically where a problem might be. So my cheap way of getting peace of mind was this: I bought $10 mold test kits for the bedrooms, the game room, and the basement. Instead of doing a settle test for an hour as suggested on the directions, I left the plate exposed for 24 hrs. - one major fault of the settle plate testing is that it may not capture lighter mold spores that hang in the air, so an hour exposure will bias your results toward molds that are heavier. So a 24 hr exposure gets you a somewhat better sample. I then sent the plates that grew stuff to the lab for species identification. My reports came back with 3 species, all of which are ubiquitous outdoors. I was at least able to feel a little reassured that there were no "bad" species like aspergillus in the air and my husband was able to talk me out of taking a sledgehammer to the sheetrock in some irrational fear there was horrible stuff growing behind the walls. Now I realize this is far from a fault-free plan. But it fit into my $100 budget and gave me a little peace of mind. I also know that DS's tics come and go, making it less likely he's in a chronically sick building, which helped me give the settle plates a little more validity.


    DS has shown inflammation on the Shoemaker markers from time to time. So our plan is to use cholestryamine the same way you might use a steroid-burst. For a brief time, to try to lower symptoms that way you'd use an antihistamine to alleviate allergy symptoms. Haven't had to pull the trigger on that one yet. But maybe talk to your LLMD about blood work and possible short term mold treatments - if you feel that herxing isn't more of a cause for the tics. Inflammation and poor detox have always been behind DS's tics when they crop up.


    Finally - only my personal opinion - but IVIG caused a huge herx for DS and in the short-term, did much more harm than good. Some have had better results, so there's no universal answer. But just know there's a downside. Post-IVIG was by far the worst 10 weeks of our 5 year journey. Make sure you've explored other options and be comfortable with IVIG - don't do it because you think you "should". Do it because it makes sense for your individual situation and budget.


    Hang in there....

  2. Agree with the others about the downside of using combo supplements. In addition to glutathione, R-lipoic acid might be a high sulfur - you should check. I know alpha lipoic acid is high sulfur and needs to be avoided by those with CBS. Also check into the negatives of carnitine. I know it's recommended for CBS but when I looked into it, it seemed to have some potential downsides that made me want to avoid it. I can't recall all of them but one was that it lowers the seizure threshold in some people and we've had issues with tremors, tics and febrile seizures, so that was a big one for me.


    The dose of methylfolate doesn't look huge for an adult - you'd expect an adult to need 400-800mcg of methylfolate if they were MTHFR+. Kids need lower doses - like 100mcg. But...everyone is different.


    If the bottle was expensive, one option would be to stop it for a week and see what happens. Then if you want to re-introduce it, start with only one capsule/day instead of 3 and see how that goes. Also double check yourself to see if anything else has changed - stop anything? start anything else? any diet changes or recent cravings of something that's particularly high in any nutrient? any upcoming changes on the horizon - start of school? family changes? travel plans?

  3. Because of her not eating, vitamin supplements would be really, really helpful. But without knowing her MTHFR status, it's hard to say what to do, except go back to what was working.


    People with only one mutation on MTHFR can sometimes tolerate/use regular folate, but in smaller doses. But without knowing, it's just throwing darts in the dark. There are two issues you need to understand before ordering 23andMe. One is privacy - what the company can and can't do with your data (understand HIPPA and their research and privacy policies) and the implications of life insurance (tho I personally feel that for kids, the science will have advanced to the point that testing will become common and insurance companies will actually start to require testing the way the require physicals now - but that's just my opinion). There's a recent thread about 23andMe being owned by Google. I don't believe that's accurate - I recall the company is led by the ex-wife of Google's exec - but regardless, you need to be comfortable with the privacy issues. You can also test MTHFR via Quest et al and sometimes insurance covers it. If not, I think it's a $450 test. You can call your insurance co. and Quest and ask about prices. But for $99, 23andMe is a better deal IMO.


    If you chose not to do 23andMe (and some people just don't want to go there), then going back to the routine you were on is probably your best option.

  4. I'd skip tomorrow's dose and then play it by ear. If she's better tomorrow, maybe give one drop Monday. You just have to base it on her behavior.


    But I'm confused. I can't tell for certain, but the calcium folinate that's in your drops may not be methylfolate but rather the pre-methylated form of B9. This is fine if your DD doesn't have any MTHFR mutations, but not the form you want if she does have mutations. Has she been tested? My advice was based on the assumption she had MTHFR issues. Not that it's bad to supplement regular folate if you have normal MTHFR - I just wouldn't expect to see such a dramatic response to an extra drop of 400 mcg.

  5. If it's the folate that's causing the blip, the good news is that the doc is right - it should calm down within the next few days. Based on my own experience with my DD, I'd not give any folate tomorrow and see how it goes (BTW - what's the form of folate in what you're using - I'm not familiar with this product). If you're still seeing any ODD, stop at the health food store and see if you can find LOW DOSE niacin - as in 25-50mg. Or if you can only find higher doses (e.g. 500mg) get the capsule form and open it up, dumping out 90% of the capsule so you can give an estimated 50mg. It can be either flush or non-flush form of niacin, tho I prefer the kind that creates a flush because the flush is from capillaries opening up and there's a small chance this helps with detox a bit. But either form will help someone who's suffering from an overdose of methyl groups.


    If she calms down, then either skip Monday, or give one drop. Depending on what you see, slowly build back up to 2 drops and stay there - or try giving one drop every other day and 2 drops on the other days. You may find that she does better on something a little less than 2 drops/day, since you were still seeing slight ODD on that dose.


    I know it sounds bizzare, but it only takes a tiny change in dosage and frequency to make a huge difference in people who have MTHFR issues. My DD only needs 67mcg (micrograms) every other day. Anything more than that and she becomes evil within days. Niacin has been our antidote more than once while I was playing around with dosing. 50mg of niacin calms her down w/in 45 min. I buy a bottle of 50mg niacin from KAL on Amazon and always have it on hand. The way I found her "sweet spot" was to cross that invisible line and dose until we got evil. Then I'd give niacin and spend a few days letting things calm down. Then I'd swing the other way and go without any methylfolate for a few days until evil returned. It was a pendulum for a few weeks as we went too high, then too low, then eventually zeroed in on the frequency and dosing that worked best. You also need to make sure you're giving 1000-2000 mcg of methylB12 or hydroxyB12 along with the methylfolate, since the two work in tandem. And be aware of how much folate she's getting in the food she's eating - especially anything fortified with regular folate, like cereal or Ensure or a multivitamin. My DD can't take regular multi's anymore because of the "wrong" folate. If your DD has MTHFR mutations, you'll want to limit how much regular folate she gets from fortified foods.


    I probably am the mom he's referring to - for several visits last year, he had to endure my preaching about the incredible impact it had for DD and how I'd "found religion" in a way, how the whole methylation thing was our final missing piece that got both my kids to the best places they've ever been (once infections and environmentals were addressed). He's starting to add methylation to his toolbox but it's a little outside his primary focus and he hasn't delved into the minutia the way I did. If you do see her return to a good place once you've zeroed in on dosing, I'd really recommend 23andMe because MTHFR is only one of about 30 genes involved in methylation - and if this blip is caused by methyl issues and not some sort of Pans flare, then you may find that several other genes are also having an impact on her behaviors and there are things beyond folate you can address that may also help DD get on a firmer foundation.


    On the other hand, there are people who've addressed mutations and not seen dramatic changes. So it's not a holy grail. For some, like my kids, it's a golden ticket. For others, not so much. But if your DD really does seem to be very sensitive, it's probably worth exploring.

  6. I'd limit the amount of time spent on the details of Pandas - keep it simple - an allergy to strep, a sudden bundle of behavioral symptoms, medical treatments available...


    But I'd want new teachers to know two things -


    1. many, many behavioral issues are medical - not bad parents, bad kid, etc.


    2. always believe in and support the child. Let him know you can see past the behaviors and know that there's a bright, valuable kid inside. Yes, you have to teach to the child's current abilities, but when a parent says their child is "more" than what you can see, believe them and resist the temptation to mentally assign the child to the "less intelligent" or "problem child" category of your students.


    My son's teachers have been consistently amazed at his abilities and character once they've been able to see the "before and after" kid. The ones who believed me and somehow reached the "inner kid" are the ones who've made a lasting difference. They helped my son build self-confidence and resilience because he know they believed in him.

  7. cholestyramine is on our list of things to try if/when DS flares. Like you, I was very reluctant to consider it - my major concern being malabsorption of nutrients.


    DS is unusually sensitive to changes in his supplements and seems to really need exactly what we've settled on in terms of daily vitamins/minerals. So cholestryamine could really mess this up. But although he's been off abx for lyme for 18 months and has been symptom-free for long periods of time, he does develop an eye tic and some ocd when a certain threshold is crossed. He too has the mold HLA gene issue but seems to be able to tolerate a certain level of environmental insults - be it dog dander, pollen, mold spores, dust mites - but then something will change - spring pollen, the dog got a skin infection, a rainy period will spike the mold spore count in the woods - and the tic and other symptoms come back. Long story short, our LLMD has helped us come to the conclusion that because there's no single thing that's acting as the trigger - that because it's more like a threshold, we need to treat DS's mold sensitivity the way you treat seasonal allergies - with supps that manage symptoms until the collective levels drop. (note - we've tested and are pretty sure there's no mold remediation needed).


    So our plan is that when symptoms crop up, I do all I can to lower the levels of triggers that I can do something about - the dog gets a short haircut, we get extra vigilant in cleaning, I poke around for mold, etc. And if after a time, the symptoms don't subside, we'll try using cholestyramine in a burst - the way you'd use prednisone for a steroid burst. Maybe a week of a low dose, to help the body detox. We won't be doing any expensive testing - even C4a and other Shoemaker tests have given us mixed results. Instead, we'll use symptom response as our guide. I'm not crazy about using cholestyramine but am ok trying it as a burst. Maybe you can try a similar approach and do a trial or bursts rather than a longer term plan.

  8. What medications is your DD taking? Some people can't tolerate medications or supplements that are high in sulfurs.


    Three in my family have a genetic mutation on our CBS gene that reduces our ability to "detoxify" sulfurs and this puts a heavier load on the liver. I was taking N-acetylcysteine - a supplement good for detox and mucus thinning - and it seriously raised my ALT and AST liver enzymes into the 70's (normal is below 50). I stopped the NAC and re-tested a month later and the enzymes were in the 20s. My DH recently switched his blood pressure meds because one was high in sulfur and his liver enzymes were elevated (haven't re-tested yet). My DD can't tolerate milk thistle for the same reason - tho milk thistle is great for liver detox, it's also a sulfur and it's not the right supplement for her.


    So maybe it isn't a question of whether the meds are "working" to fight infection, but rather whether they're the right meds for her body. If she still has symptoms, then I'd say you're not done with treatment. Most lyme docs continue to treat until you're 2 months symptom-free. You may instead want to discuss switching meds rather than stopping treatment altogether.

  9. Yes, this sounds very much like Pandas (or Pans if the trigger is an infection is something other than strep). You're also very lucky to have clinicians willing to support a Pandas diagnosis. But if they feel this is Pandas, then hopefully they're also willing to do a 3-4 week trial of antibiotics to see if her symptoms improve (they should - tho they may not go away completely - sometimes a few weeks isn't enough).


    It sounds like you might want to read up on all the ways OCD can manifest itself - it can be especially hard to recognize in a child because they can't always express themselves in adult terms and because young children have magical thinking that can cloud the picture even further. This link might help: http://latitudes.org/forums/index.php?showtopic=6153 - it was compiled by our resident OCD expert. Rages can often occur when OCD rituals aren't followed because the child becomes terrified something bad will happen when the ritual isn't completed.


    I highly recommend you get a few books about OCD for your child - she may be struggling with how to explain things and knowing that others have the same challenges can really help. Some of the best books for kids are "What to Do When Your Brain Gets Stuck" (specifically for OCD) and "What to Do When You Worry Too Much" by Dawn Heubner and "Up and Down the Worry Hill".


    If you're seeing frequent strep and yeast infections, a good, daily probiotic would be really helpful for both girls. Give them at least 2 hrs away from antibiotics and preferably on an empty stomach (we take at bedtime) because lower stomach acid can help more of the probiotic make it into the GI tract where it's needed. We use CP-1. Theralac and Truflora are also good products. You want to use something with a good blend of both bifido and acidophilis strains.


    ACN sells a booklet that's an intro to Pandas - you can find the link at the top of the forum. And browsing through the Helpful Threads for Pandas pinned at the top of the forum is also a good place to start. Pandas is rarely a "one time" event. If a child is prone to an autoimmune response to a strep infection (or other trigger), then things generally return to baseline or something close to normal once the infection is gone but will come back if/when the trigger comes back - such as a new infection or exposure. In general, the faster you can treat the infection and more aggressively you can bring down the associated inflammation and immune response, the fewer "bad habits" the immune system will learn. But even kids who've had Pandas for a long time can recover - it just takes longer. My best advice is to actively advocate for a trial of antibiotics and educate yourself as much as you can to give your daughter tools. Cognitive behavior therapy can be a great help for the whole family as a coping tool.

  10. We just did the basic panel for $200. It's not all inclusive and there are many co-infections you need to be aware of, but we were tapped out of money. So we did the basic just to get a starting point. You run the risk of not getting a "conclusive" result because you didn't test for everything, but if you do the basic and it has positive or indeterminate bands, then you can start treatment without having to spend additional money on other tests. You have to make the decision that's best for your situation.

  11. My advice - do some testing first if you have a doctor who's willing to help. Try doing a Spectracell test, which will tell you what minerals and vitamins are in a good range and which are low. I also highly recommend 23andMe testing, which will tell you which supplements would benefit you and which would be harder for your body to handle. For my family, this was a huge part of recovery. But you do need to understand the privacy issues of dna testing as well as be prepared to do a fair amount of research once you get the results.


    If neither of these is an option, then I suggest only introducing one thing at a time, for a minimum of 2 weeks, before adding another thing. Otherwise, you'll never know what supplement was behind any particular response. My personal preference would be to add magnesium first, since it's calming and can help some people with tics. 400mg is the RDA but no one in my family (even the adults) take that much on a regular basis. Too much magnesium produces very loose stools, so we dose based on "results" - which is generally 200-300mg.


    The second supplement I'd add is zinc, which is essential for the immune system. My DD (60lbs) only takes 10mg. My son and I have pyroluria, which is a zinc/B6 deficiency, so we each take 40-50 mg/day - which is very high for most people. So stick with the lower dose unless your doctor can test you for pyroluria to see if you need a higher dose. Zinc has little effect on my DD but for my DS, it had huge cognitive impact. Zinc deficiency is also implicated in some cases of anorexia. Dr Greenblatt says in one of his books that you can drink 10ml of liquid zinc and if it has a strong metallic taste, you have enough zinc. If it has no taste, you're zinc deficient. You can buy liquid zinc on amazon.


    I'm the only one in my family who supplements calcium, for bone density. Yasko discourages calcium supplements unless blood work shows deficiencies because calcium excites neurotransmitters.


    L-glutamine is a tricky one. It can change into either gaba or glutamate. Not sure how you'd control it once in the body and I wouldn't want to increase glutamate. So not sure I'd be eager to use this one.


    Taurine is something I'd want to test first. Depending on your genetics, not everyone can process taurine well. I used to give this to DS then found out thru 23andMe that it was something he should avoid. I know a lot of naturopaths suggest it but it isn't a good fit for everyone.


    Sometimes just throwing supplements at the problem without first testing ended up creating issues rather than solving them for my kids. Go slow, start with low doses, and only add one thing at a time. Too much of something can be as bad as too little.

  12. Bigmighty - they still do the full 990,000 snps and allow you to download all the raw data. The only thing that's changed is that they no longer provide health reports that have your risk of xyz condition (which wasn't that useful anyway).


    Hope - I used initials but didn't do any sort of identity hiding other than that. I read about a scientist who have a dna sample to a group that was trying to determine how hard it would be to identify him based only on 2 or 3 pieces of information - I can't recall what info he gave them but it was vague - something like his age group, what region of the country and maybe one other thing. They traced the sample to him in a very short time. So using things like aliases isn't really going to prevent someone from finding out who you are if they really wanted to. But getting the methylation info was too important to me to worry about it too much. It helped my DD immensely so I wasn't going to waste tons of emotional energy worrying about something I couldn't control. It was either take the privacy risk or go without the info, which for me wasn't an option.


    I think you can use different addresses and aliases to keep marketers at bay but not to protect your dna identity if someone were to really want to track you down.

  13. Everyone is different but my DS never had a Pans reaction to colds or viruses. He fought those the way any kid does, with no neuropsych symptoms during or after. But he continues to have Pans reactions whenever he gets a bacterial infection, even tho he's in remission most of the year. So colds for us are no biggie, bacterial infections are.

  14. Dr M in CT treats both kids and adults but gives priority to kids on the waiting list. PM me if you want his contact info.

    Kara M used an LLMD in the Boston area for herself. She isn't on the forum very often but does respond quickly if you PM her. If you can't find her in the member directory, let me know and I'll get the doctor's name for you if you're interested.

  15. Thanks so much for taking the time to answer me!! Soooo its NOT just one month of three anti biotics? He get's so emotional on anti biotics after awhile I am not looking forward to years of this. When people say they are in treatment they mean anti b or something else? I was so encourages to here about your son. What about homeopathic? No real good LLMD here in NJ that I have heard of yet without controversy. I will store this story in my mind for future encouragement. Something tells me I am going to need it.


    For us, it was many, many months of combo abx. Once it's been there for awhile, one month is not enough. For us, treatment was more than just abx. It included nutritional supplements, removing some minor mold issues and some other things. Some have been helped by homeopathy but it didn't help my son. Our LLMD is about an hour east of Dr B. But as others have said - there is no "right" doctor. They all have their pros and cons. It's a matter of finding the "right" doctor for you.


    You mention your son getting "emotional" on antibiotics. You may want to search the forum archives for "detox" and "herx" - and google "herxheimer response" - a "worse before you get better" response very common in lyme treatments. Also be sure to add 30-50 billion CFUs of probiotics, taken at least 2 hrs away from antibiotics, to replenish the gut bacteria that gets killed by antibiotics.

  16. You should ask your doctor to do 1) a rapid strep test (a throat swab) 2) a throat culture (a 24-48 culture, sample taken at the same time as the rapid swab) and 3) two blood tests - a strep ASO titer test and an Anti-DNaseB titer test. If your pedi won't do this, take your DD to a walk-in clinic and request these tests. There's a beginner's overview booklet for parents who are new to Pandas, sold by this forum http://latitudes.org/store/should-you-consider-pandas-ebook/ that might be helpful as well.


    If the other family is happy with their Pandas doc, it may be worth getting an appt. But you want a doctor who has experience and is willing to try multiple treatments. Pinned at the top of the forum under "helpful threads for Pandas" you'll find a list of doctors by state who may be helpful. Or you can post the general area where you live and ask for suggestions. It sounds like Pandas is at least worth exploring for your daughter.

  17. As SSS says, you can have both Pandas and Lyme. It's why the NIMH has coined the term PANS to include non-strep triggers. Based on your description - especially the rages, brain fog and the failure to achieve full remission under a single antibiotic therapy, I'd agree with the decision to pursue Lyme and see where it gets you. Testing for Lyme is horribly inaccurate but Igenex is among the best of options. The fact that previous Lyme tests were negative doesn't mean much.


    I don't post on the forum much anymore, but your story was too close to home for me to not chime in. My son was dx'd with Pandas and treated by two of the top Pandas docs for 2.5 yrs. He underwent long-term abx, steroids, t&a (tonsillectomy), plasmapheresis and IVIG. He could never sustain more than 2 months of improvement before things tanked over and over again - for 2.5 yrs - from age 6-8. His Quest western blot for Lyme was negative. I felt so hopeless. Finally at the urging of my BFF, we tested thru Igenex and my son had 5 bands show up. We started with an LLMD who put my son on 3 abx - azithromycin, augmentin and bactrim (because LLMD suspected bartonella due to rages). Within 3 weeks, I knew we were on the right track. It still took 2.5 yrs to get to full healing. But he got there!


    My son is now 11 and has been off all medications for 15 months. He is in the best place of his life. He remains susceptible to Pandas flares if he gets sick but the episode passes quickly now that we have a dr. who will prescribe abx at the first signs of symptoms. Hoping this fades as he gets to the other side of puberty. He remains sensitive to mold and will develop tics and brain fog if there's a mold issue. But these too resolve once we find the source. So is he "cured"? No. Is he in full remission and a totally happy, healthy kid? Absolutely. This week he's spending 4 hrs/day in the 90 degree heat doing a crossfit camp - lifting weights, rope climbing, running, squats...and loving it. The camp is run by last year's math teacher and today, the teacher told me "your son blows me away! He is so focused and confident and determined. He's come so far - I'm just amazed." This is a kid who was consumed by anxiety, OCD and brain fog a few years ago, a kid who missed more than 20 days of school because he couldn't get off the couch due to muscle pain.


    A long and very winding road to recovery? Yes! Permanent damage? Absolutely not. Give the lyme protocol some time and see where it gets you. The proof is in the pudding, not in a lab test.

  18. Have you tested MTHFR? If you have mutations, it's possible a reduced ability to convert folate into methylfolate (which is what MTHFR does) can create a "folate trap." The folate (and its companion B12) aren't being used up in a well-running methylation cycle and instead, they puddle up, showing as high folate/B12 levels. Docs think - hey, this is good, you have plenty. But when you have MTHFR, it's like being surrounded by canned foods and starving because you lack a can-opener. Plenty of food, but you lack the necessary tools to get the nutrition you need.


    If you do have MTHFR issues, you'd need to be avoiding regular folate (e.g. fortified cereals) and supplementing with small amounts of methylfoate and either methylB12 or hydroxyB12. That should get the cycle moving properly and you'd expect to see your folate and B12 blood levels drop.

  19. There are many doctors in the Pandas, autism, lyme and integrative medicine fields that don't submit to insurance for payment. Insurance co.s will generally only pay for a 20 min consult and these doctors feel they need additional time with their patients in order to treat properly. But all the doctors we've worked with gave us a red insurance claim sheet. We pay the doctor at the time of visit and then take the red form and file it, along with our insurance co's claim form, to the insurance co directly. The insurance co then processes the claim.


    Generally, the ins. co. approves 60% of the charges by classifying the doctor as "out of network". If we've met our deductible, they send us a check for the 60%. If we haven't met our deductible, that 60% gets applied toward our deductible.


    Is it a pain to submit your own claims? Yes. And from a cash flow, you're the one laying out the full amt and then waiting to get some portion of it back. But the upside is you get more time with an expert doctor (which can save months or years wasted with the wrong doc). You can always call your insurance co and ask how the process works with them specifically, and with your specific doctor's name. And ask how you'd go about filing your own medicaid claim if you were to use an out-of-network provider. It may be do-able.

  20. These are not the same tests. There may be some overlap in some of the genes they report on, but I've only done 23andMe so can't say for certain. For me, 23andMe was incredibly useful - one of the Top 5 tests we've ever done. It gave me info to help my DD with her mood swings and my DS with his quick anger. It helped my DH with a blood pressure medication issue. It helped me understand how to change my own diet and supplements. But it helps different people to different degrees.


    Who reads the results? You do. Under the pinned threads at the top of the forum, you can find a long post by me on which resources were most helpful in understanding your results. You can also search the forum on MTHFR and 23andMe and find additional information.

  21. the HLA stuff is genetic - as SF mom says, it tells you how well you can remove toxins from your body. One combo of these genes makes you a poor detoxer of lyme/bacterial toxins, one combo makes you a poor detoxer of mold toxins and one combo is the dreaded "can't detox anything". There are a variety of combos.


    Not being able to detox mold toxins is different than being allergic to mold. An allergy suggests a histamine response (along with inflammation) while in the general vicinity of mold while an HLA issue with mold suggests an inability to remove the toxins from your body, even after the source of mold is removed. The genetic inability to detox can potentially keep you sick for a long time, because the toxins keep recirculating instead of becoming bound and excreted.


    Is it worth the money? I found it helpful (ours was covered by insurance) but if money is tight and you don't think insurance will pay for it, you could just assume that being near mold is bad simply because of the allergy aspect and put the money toward finding/eliminating sources of mold.

  22. Just faced this problem this yr, as DD is headed into 7th. Like yours, he's fully vaccinated so far. And I believe in the value of vaccinations in general (albeit on a much gentler schedule). But given his extreme sensitivity to things, I took the religious exemption. I just think his body needs some time being stable before we throw yet another challenge at him -the required mengicoccal vaccine especially worried me. With puberty on its way, just too much all at once when we're only now returning to stability after soooo long. I'll cross this bridge again before college and at that time, DS will have a vote and maybe I'll feel more confident in his body's ability to react rationally.


    Like you, I noted that the vaccines don't protect against strain B nor against viral meningitis. Pertussis outbreaks have occurred even in populations that were fully vaccinated. So it's a risk that outweighs the rewards at this moment in time. Just not yet, at least not in our house.

  23. We did a dmsa challenge and DS came back slightly high for mercury. We chelated for a few weekends but didn't see much change one way or the other. He was also dealing with some herxing issues from lyme and because the numbers were never very high, we moved on to other treatments. There are conflicting strategies out there. Andy Cutler is adamant that you chelate only on weekends and that you strictly adhere to a dosing schedule (every 6 hrs? every 4hrs? can't recall). He feels this limits the inflammation and does the best job of moving mercury out of the body. He argues that to mildly chelate every other day is far worse and only serves to move mercury around within the body. Personally, I'm not aware of any science to support any particular dosing strategy. Do your homework and decide what theory makes the most sense to you.


    It's quite possible chelating can bring out the worst but it depends on your levels. If low, it may not be worth the benefit. If levels are high, then it's probably worth going thru the storm.

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