LNN

Dating??? Driving??? "Our" little boy has grown up!!! So glad he's enjoying life the way you always dreamed he would! He's lucky to have you!

Melanie, You're right that NAC is a good glutamate modulator, but it also does other things. It's a great mucus thinner, so it can be used in lyme treatment to break down biofilms, which is a kind of slime many germs and viruses can hide in inside the body (tooth plaque is a biofilm). It can also boost the body's production of glutathione, which is the body's master antioxidant. So all good stuff. But some people have a gene mutation (in a gene called CBS) that makes them intolerant of NAC for other reasons. When I took NAC for a chronic cough, it did a great job with the cough, but also made me depressed and raised my liver enzymes (my ALT and AST were in the 80s when normal is below 50). I stopped the NAC and my depression lifted and my liver enzymes dropped to the 20s. I have a CBS gene mutation and can't tolerate NAC or MSM or eggs or garlic (even thos I love garlic). If Dan is doing better without the NAC, stopping it is obviously a first step. You can talk to his doctor about other glutamate agonists - isn't he on Namenda? If you're interested, there's affordable genetic testing you can do ($99) that will tell you if DAN has a CBS defect or other genetic defects that are getting in his way. But few doctors know what to do with the info and you usually need to do a lot of figuring it out on your own. It's made a big difference for my kids so I tend to go overboard on the topic. Peglem can probably give you a more balanced view of what testing and treating methylation issues might bring you. 911RN - my son can't tolerate Omega 3s and instead needs to supplement with evening primrose oil (a non-inflammatory Omega 6) due to his pyroluria. If you have a doctor willing to test for it (it's not mainstream), it made a huge difference for my son. Supplementing zinc and P-5-P and adding EPO made a huge difference for DS - like someone turned on a light in a dark room. His "woke up" in many ways. Pm me if you want any links or info on testing/treating,

It wasn't even my IP address that I was concerned about as much as letting yet another server house my dna data. It's like my desire to guard my SSN. Some companies have it - no getting around it when my mortgage co. insists on it. Yet I try not to give it out to too many places. Likewise, I felt I had to give my dna data to 23andMe to get what I wanted. And I gave it to genetic genie because I was too new to the process to know how to get it myself. GG promises to delete my data and Ip address immediately after running the report, but I can only take them at their word. Livewello wants to store the data just like 23andMe does. I just start to feel uncomfortable the more widely my data is shared. Especially since Livewello is a new company with limited resources for data security (not that even big co's can't be hacked). I felt the rsik I took with 23andMe was worth what I got in return. I don't feel the same way about Livewello. But that's just me. Some people on other support sites feel it was really helpful. I think it depends on how much you're willing/able to do yourself vs. your risk tolerance.

I do not. I think Sterling Hill & co. knows this stuff better than most, but my concern is privacy. As I understand it, Livewello is intended to be a repository of online medical info on you - a partal where your docs can log in and see all your stuff. Although she's tried to explain the security steps they've taken via email, their non-Livewello site was recently hacked. I think the analysis and the genes they've chosen to analyze are probably very valuable. I just wish I saw more ink given to the security measures they take. I have similar concerns about 23andMe, even tho I've opted out of all sharing, and will eventually tell them to delete my info when I'm done using their search engine. But I have a (probably false) sense of security that 23andMe has a better security infrastructure. I can't stop thinking of Livewello as a server sitting in Sterling's living room and while that certainly doesn't mean that server isn't secure, Sterling has often commented on her limited resources to treat her own health, I don't have a sense that money's been no object in terms of fire walls, technology, etc. Just my uninformed opinion but figured I'd toss out concerns for you to investigate before you sign up. Ben Lynch also offers his own analysis, with lots more snps than genetic genie. But when I looked at the snps he focuses on, I grew frustrated. Ok, I have abc snp and it raises my risk for death by spontaneous combustion. But if I can't find any info on what to do about that, then I'm not sure it's worth knowing (at this moment in time). Since methylation seems to be the only area where gurus have offered "how to" info, that's what I've limited myself to for now. If you do sign up, let me know what you think. Maybe my concerns aren't valid.

We did a test from Metamatrix thru our LLMD. When you do it thru a practitioner, they can sometimes offer price breaks - the testing co. requires $ up front and then they submit to your insurance to see if they can get additional reimbursement. But regradless of what they do or don't get from your ins. co., you're only on the hook for that initial payment. I don't remember the exact amt, but we paid somewhere in the $99 range. But if your dr doesn't have a relationship with Metamatrix (I think they have to register as a provider, probably not overly difficult), you can order the kit directly thru a third party co. http://www.accesalabs.com/metametrix?gclid=CKTpgLyBlrkCFQSk4AodQVsA2w but for a significantly higher price. I looked on Quest's test menu and they also offer a yeast test that cultures/identifies strains but I don't know how much it is or if it also tells you what those strains are susceptible to for treatment. I see other tests that idenitfy suceptibility, so maybe you need to order both tests at the same time. http://www.questdiagnostics.com/testcenter/TestDetail.action?tabName=OrderingInfo&ntc=20541 Sometimes you can call their billing dept and give them the CPT code and they'll tell you the list price for the test. Then you can call your ins. co. and ask them what they'd pay for that test. It usually isn't an exact amount - they hem and haw b/c they don't want to reveal their discount structure. But sometimes it's given me an idea in advance if it's a reasonable cost or if I shouldn't ask for the test due to the price. It might tell you that you'd be out of pocket as much as if you'd gone directly to the co. in the first link.

DS also craves carbs. He gets silly, hyper, short tempered and his thinking gets foggy. Sometimes it gives him OCD. As you can see, it can be hard to tell the difference between yeast and Pandas induced behaviors. Garlic and probiotics and butyrate can all help. There's a blood test for candida antibodies. But we've found a stool test to be a better detective and a better guide on what to use to treat (it identifies the strains it finds and what those strains are susceptible to treatment wise).

Because you don't have the energy to delve into this with both feet, these are the snps I'd probably concentrate on first if I were you: MTHFR +/+ MAO-A +/+ CBS +/+ VDR Taq +/- Understanding and addressing these will probably bring you the biggest bang for your buck. Then, when you're feeling stronger, go back and look at the whole picture and tweak for the other snps as your energy and funds allow. Not saying to never address them, just come back to them later. Searchingforhelp is right - Yasko and others say to address CBS first. Think of two important cogs in a clock. The cog on the left is the methylation cycle. The cog on the right is the detox cycle. CBS sits where these two cogs meet. Being CBS +/+ means this gene is upregulated - it works in overdrive all the time. Yasko's thinking is that if you toss supplements into the cog on the right (the methylation cog) before you address the CBS issue, you're going to start one cog spinning before the second cog can handle the added toxins you start sending down the pipeline. As frustrating as it is, you do need to treat CBS first, or at a minimum, start it for 2 weeks and then slowly, slowly add some methylfolate and methylB12 (for MTHFR) while you still go heavy on treating CBS/detox issues. Now, keep in mind I am not a doctor, I have zero medical training. I make mistakes. I'm assuming you're going to read this document http://www.heartfixer.com/AMRI-Nutrigenomics.htm and the links in this post #18 http://www.latitudes.org/forums/index.php?showtopic=3928&page=2, if possible, get your mom to read it too - before you start any supplement program. Since I have no idea what medications, supplements or diet you're on, you need to be your own advocate and take all these things into consideration. But I'm hoping that the following will get you to a place where you will feel better enough to then be able to study more of this on your own. If I were you, (again, not knowing how your medications and medical conditions come into play here), I'd spend a few weeks treating CBS first. 1. For CBS, I'd add molybdenum and avoid/restrict foods & supplements that are high in sulfites (see heartfixer doc for specifics) (buy the liquid form http://www.holisticheal.com/molybdenum-drops.html so you can easily adjust dosing). Molybdenum helps your body break down sulfites into sulfates. Read the heartfixer link in the paragraph above for dosing info and other suggestions. You can go to the fist page and click on the CBS hyperlink and it'll bring you right to the CBS section. You can pursue the ammonia component of CBS if you want - I did not. So I can't advise on that part, other than to caution you on at least one of the supplements Yasko suggests - Yucca - which raises estrogen. I personally wasn't comfortable with the supps she suggests for ammonia. If you use any, make sure you have the energy to research side effects, contraindications, etc. I've read that Yasko is chaging her views on CBS and ammonia but I don't know what she now recommends. 2. After 2-3 weeks, if you feel you can't wait as long as Yasko recommends, then I'd treat MTHFR. You need to add both methylfolate and methyB12 for this snp. Given how sick you are, I'd start with drops so you can start at super low doses and then build up. If you've been sick a long time, you're body will probably go thru a lot of detox, so don't jump in at adult doses right off the bat. I use this http://www.holisticheal.com/methylmate-b-nutritional-supplement.html I'd start with one drop/day for at least a week and then titer up slowly based on how you feel. At the same time, consider adding this http://www.amazon.com/Source-Naturals-MethylCobalamin-Flavored-Sublingual/dp/B001G7R8J2/ref=sr_1_1?s=hpc&ie=UTF8&qid=1377298454&sr=1-1&keywords=methylcobalamin It's strictly methylB12 and you may find you do better on a blend of methyl and hydroxyB12 down the road (Perque is a brand Yasko once recommended as a good blend but now she has her own supplements). For now, given your extreme fatigue, I'm gonna guess methylB12 w/o a blend will help. You may even find you do better on more than one sublingual, maybe 2-3 times a day. But try to avoid taking in the evening. B12 is an energy vitamin. You don't want it causing insomnia. This is all trial and error. If you can find a doctor who will help, that's great. I only write these suggestions in case you con't find a doctor. One note of caution - any doctor who wants to put you on a high dose of anything right away - question them. Think of yourself as a rusty 'ol car and you're going to need some TLC before you're ready for drag racing. You may end up on a very high dose - in the mg range. But start in the very low mcg range and give yourself months to build up. Go slow. I can't say it enough. Go low and slow. If you start to not feel right, stop. Wait a few days, then re-start at a lower dose. No medals given for speed. 3. Next up I'd suggest tackling VDR - this is the gene that helps your body convert Vitamin D into dopamine. Being VDR +/- and COMT -/-, you should be able to tolerate Vitamin D3 supplements. Because of this combo, the gurus say you're prone to running low in dopamine and that would seem to be true given your horrible depression. The "good" news is that your MAO-A means you degrade what dopamine you do have more slowly. Having MAO-A is like having a built-in MAO inhibitor. But when you do het your cycles (cogs) moving again, if you're on an antidepressant that's an MAO-I, you'll need to re-look at dosing. you may need less or none at all. When it comes to D supps, I know some docs suggest one large dose once a week (50,000 IUs). It makes more sense to me personally to do lowers doses (1,000 - 5,000 IUs) a day. It just seems more like how the body gets its needs met naturally. But that's JMHO. 4. With these three things treated and at a stable dosing, you may not need to do as much for the other genes. But by then, hopefully you'll feel strong enough to take a deeper look at the whole picture. I'm in no way trying to be some sort of expert or doctor. If you do find a doctor to help, disregard all of this. It's just that I know how hard it is to find medical support and if you're so disabled that you can't take on this challenge alone, these steps might help you regain enough strength that you can then become your own expert.

In addition to wanting to avoid strep strains, if your child has any issues with histamine, I've found several sites that seem to confirm some probiotics raise histamines and some lower them. From this site (FWIW) http://salicylatesensitivity.com/forum/comments.php?DiscussionID=2683 friendly probiotics for Histamine Intolerance sufferers. Regarding Probiotics My Findings Are: PROBIOTICS to AVOID. Lactobaccilus Casei increases, Histamine and tyramine Lactobaccilus Lactis Lactobaccilus Fermetum/ Fermenti Lactobaccilus Paracasei Lactobaccilus Bulgarius , increases Histamine Streptococcus Thermophilus Enterococcus Faecium Enterococcus Faecalis GOOD Lactobaccilus Acidophilus Lactobaccilus Rhamnosus Lactobaccilus Salivarius Lactobaccilus Sporonges Lactobaccilus Gasseri Bifidobacteria Breve Bifidobacteria Longum Bifidobacteria Infantis Saccromysis Boulardii Lactobaccilus Lactis Lactococcus Lactis Lactobacillus Planatarum, inhibits Tyramine L.Reuteri … elevates Histamines short term but raises anti inflammatory camp levels Saccharomces- Boulardii Many here like Florastor aka Saccharomces Boulardii aka Sacc B because it's a "good" yeast that's supposed to crowd out bad yeast like candida and because it's a yeast, you can take it at the same time as antibiotics - unlike any other probiotics, which have to be taken at least 2 hrs away from abx or the abx will kill it. My DS, always the contrarian, can't tolerate Sacc B - it makes him very aggressive, impulsive. So when you start a new probiotics, be observant for a few weeks. Some things that might make you think you're seeing a small flare of Pandas could actually be a behavioral reaction to a new probiotic. I've read lots of good things about the bifido strains and the need for balance between the lactobacillus strains and the bifdo strains (heavy on the bifido strains, which is what mother's milk is high in). My new personal favorite is from Kirkman http://kirkmanlabs.com/ProductKirkman/333/1/Bifido%20Complex%E2%84%A2%20Advanced%20Formula%20-%20Hypoallergenic%20-%20New,%20Improved%20Formula/ It's not "cheap" but it's not expensive as far as probiotics go and it seems to be agreeing with DS.

A balanced reminder, DCMom!

You're right - can't do rifampin alone - too easy for bugs to become resistant to it. But we did it in combo with zith for a yr. If it's something you feel strongly about, send me a PM and I'll give you my LLMD's #. I know he and Dr B have several patients in common and I think they may have talked on the phone a few times. I'm assuming you're not in a place where you'd consider stopping abx and just doing diflucan. But there are other things that treat yeat that you might try - garlic (alicin), butyrate, or probiotics high in bifido strains - LLMD wants me to start using this http://www.amazon.com/Xymogen-ProbioMax-DF-Billion-Probiotic/dp/B004U2BZY4 You might also want to google molybdenum. Moly helps the body break down aldehyde - which is the stuff yeast releases to cause that drunken sailor behavior and brain fog. It doesn't kill the yeast but helps you feel sober again. We use moly drops so we can control doses up or down as needed. DS has been off abx since April but yeast has been a tough beast to kill after 5 yrs of abx making the bioterrain a wasteland. It reminds me of my losing battle with the crabgrass in my lawn. It's really hard to get things lush again. It can look a lot like Pandas in terms of its OCD and ADHD effects. Fingers crossed your appt next week gives you some new things to try!

Can you do a stool analysis with metametrix? My DS's bloodwork for Candida was negative but Metametrix showed he had yeast issues other than candida strain and showed what the particular strains were susceptible/resistant to. It also looks for parasites and e coli etc. I think it was @$100 for the test. Like you, I'd assume the diflucan should be doing the trick, but if you run out of ideas, the metametrix test was helpful. I also got good info from a Spectracell blood test for my other child and it showed some vitamin/mineral deficiencies that ended up being key to fixing some of her issues. FWIW, my son was on Rifampin for about a year for lyme - it really helped. Why can't you get that long term?

ou can go to mthfrsupport.com and they have a tab for finding doctors, tho it's not extensive. They also have a FB page and there are three clinicians who offer phone consults - one is a chiropractor, one is a nutritionist and one is a physical therapist. They know the topic well, but realize they aren't MDs. I've not found any doctors locally who know this stuff well enough to guide me. I do bounce ideas off our LLMD and he can sometimes tell me if an idea is a good one or has holes in it. But it's generally up to me to do the leg work and the trial and error work. What part of the country?

If you go to post #18 on this thread, it might help you get started. http://perque activated b-12 guard which is a blend of methyl + hydroxy B12. I just ordered some and my DH can't tell a difference between it and the pure methylB12 he was taking. But my DD noticed a difference almost immediately and prefers the pure methylB12 http://www.amazon.com/Source-Naturals-MethylCobalamin-Vitamin-Flavored/dp/B000GFPDAG/ref=sr_1_1?s=hpc&ie=UTF8&qid=1377126211&sr=1-1&keywords=source+naturals+methylcobalamin+vitamin+b12+sublingual They both have many of the issues you list - COMT, CBS, MTHFR, VDR Taq, MTR, MTRR, BHMT.... But you have added issues with the vaccines and adult Pandas symptoms. So what works for your DH may be different. Yasko says to start with CBS first and I get why. But you might also need to take into consideration how your DH's anxiety or post-war experiences are a factor. It might be that taking a look at the anxiety-inducing issues first, or at the same time, are important in getting your DH to a better place. FWIW, rumor has it that Yasko has recently changed her views on what role CBS plays in ammonia. So doing things like urine test strips to monitor CBS supplement needs may not be part of her protocol anymore. But the part about using molybdenum to help convery sulfites into sulfates still seems to be accurate. It's a lot to read and digest and re-read and re-digest. You can drive yourself nuts. But with some careful, slow/low trial and error, it can make a big difference. I hope it helps!

I PM'd you

D - my son's friend has perfectionist OCD. At first my son thought this would be a good kind of OCD to have (if you had to have it at all) because it makes his friend driven and accomplished. But it can be it's own torture for sure. Do you have any therapist who could help you develop some sort of ERP around failure?

In Cure Unknown, a very, very thoroughly researched book that does not stray into unconventional theories or unsubstantiated anecdotal evidence, Pamela Weintraub documents a case where lyme disease does kill. Under Our Skin also documents cases where untreated lyme led to death. Yes, I do think every parent should be told that strep can trigger OCD. Even if it is rare, to the person with Pandas, that knowledge can be life changing. I do not advocate inciting paranoia but I do advocate for dissemination of information and education of caregivers. (HopeNY - thanks for the math point. I edited my first response to remove bad math done too early in the morning without a calculator). edit - a friend just posted this on another site - http://www.nbcnewyork.com/news/local/Poughkeepsie-Teenager-Dies-Tick-Virus-Investigation-Joseph-Elone-220270481.html Deadly Tick Virus Eyed in Death of NY Teen Who Collapsed in Yard Joseph Elone's family says the Hudson Valley teen was sick for about two weeks before he suddenly collapsed and diedHe died not from lyme but from a tick infected with Powassan encephalitis. The virus is untreatable and can be transmitted by a tick bite in a matter of minutes. 6% of the ticks in the Hudson Valley are estimated to carry this virus.

If you do become concerned about them getting into your mattress, you can get matress and box spring allergen encasements. The little suckers wouldn't be able to feed and would die. Wouldn't address the nooks and crannies nicklemama mentions but I know it'd help me sleep better!

The rate of MS in the US is 1 in 1000 - we don't dismiss MS as not a big deal just because it doesn't effect all of us. The CDC estimates that 50,000 people in the US get infected with HIV every year (1/6 of this lyme estimate). Yet it's a very big deal. And unlike MS or HIV. lyme disease is very, very often mis-diagnosed for years. So the actual number of infections may be much higher. In addition, this is 300,000 NEW cases each year, not simply 300,000 total cases walking around the country. I thinkn the point of the article is that it's a much bigger problem than doctors and the press have historically acknowledged. Considering how many kids roll down a hill in the grass or hide in bushes in a game of hide and seek, it's something every parent should be aware of. (edited to remove incorrect math, done prior to morning coffee)

I assume you mean Yasko even tho the "smart" phone decided you meant Lasko? Yes, there are many times I read her stuff, Lynch's stuff and I think "get real! These are kids we're talking about! Are they supposed to survive, let alone thrive, on cardboard?" You can't eat rice because it contains arsenic, you can't eat most fruits if not organic because they absorb so many chemical sprays, tomotoes have been engineered to have no flavor, most corn is GMO... I live in a somewhat rural area and there is one farm a few miles away that sells organic produce - for about two months of the year. Unfortunately, my picky eaters don't like most of what they sell. So I have a hard enough time limiting processed foods. To restrict things further based on methylation no-no's? I read thru all the "suggestions" and then I ignore a lot of it because it just isn't practical for my family. If you're not careful, you can become afraid to eat anything! For all I know, the ashwaganda has been sprayed with pesticides. You can only do so much. I do my best, hope for the best and then console myself with the knowledge that my failings will keep a therapist employed when my kids are older and need to emotionally heal themselves from the scars of having to take a dozen supplements a day in their childhoods.

I started it a week before we went on vacation. On vacation, she slept better - but...was alo exhausted from full days of activities and went to bed late. This was the week, when none of us, sharing one hotel room, wanted a night light. Thus, she learned to do without. The week we got home, she continued to get to sleep easier, in the dark. So if it was the Ashwaganda, I'd say sometime during week 2.

There's only one way to find out. A bottle of folapro in one hand and a bottle of niacin as the antedote in the other! Guinea pigs R us....

Dr M started DD on a supp a month ago to help with some insomnia and adrenal support and it contains ashwaganda as a significant ingredient. Her insomnia has improved a lot - but hard to say if it's the supplement or the fact that she learned to go to sleep without a night light and now that her eyes have nothing to look at, she gets bored and falls asleep quicker. I hope it works for you!

My DH and DD are MTHFR +/- and so they take methylfolate and a methy+hydroxy B12 sublingual. But that means they can't take a traditional B complex that contains folate and/or cyanoB12. I finally found a B Complex that has all the other Bs except the folate and B12 - http://www.amazon.com/Nature-Made-Complex-100-Caplets/dp/B0013NB71E/ref=sr_1_7?ie=UTF8&qid=1376942272&sr=8-7&keywords=nature+made+b+complex It doesn't use mega doses either - another plus. Tho the label says it contains 1000% RDA of this and 500% of that, many B Complexes contain much higher doses. Tho I'm MTHFR -/-, I find that I feel better when I use the methyl forms of these vitamins too. So I started this B Complex about 3 weeks ago and it was over the weekend that I realized I felt better. So it wasn't an immediate "AHA" but this is the only change I made. I think that with supplementing only the B9 and B12 for a time, I might've gotten too low in other Bs when I stopped my multi-vitamin. I think this stripped down B Complex is helping re-balance things.

I've been in everyone's shoes for many years. After so many times of getting 'that" look from anyone I spoke to about anything "controversial" I learned to just shut up about most of it. The only relative who doesn't judge me is the sister who's bipolar and is quite used to being the crazy one. For a long time, she was the only one who saw my kids often enough to be able to see glimpses of my kids on their good days. The rest of the family saw us once a year and inevtiably it was when things were not good. My kids have been off abx for 4 months. My son is better than he's ever been. Some mild to moderate OCD is the result of yeast (5 yrs on abx) and treating that is getting rid of it, slowly. All other issues are, for now, resolved. So a few weeks ago, we spent two days with family at the tail end of our vacation. I constantly heard "Holy cow, he's so grown up! He's such a changed kid! He's so polite/friendly/calm/mature/content.... " I stopped myself from "schooling" anyone on any aspect of our journey. There was no point, even tho there are other kids in the family who have adhd, convergence insufficiency, behavioral and learning challenges...You need to be ready to hear these things and until you are, it falls on deaf ears. My crowning achievement was when my dad, who's 90 and has seen DS in bad times, told my sister (the crazy one I love) that he really enjoyed DS during this visit. At that moment, I had my validation. It was all I needed - and made the rest of the crap all worth putting up with. We will always be judged. But know that you will reach a day when people see your children and realize you weren't so crazy after all.

Oh Dee, I'm so sorry! I know how terrifying it can be and it's something I fear too. You've been at this long enough to know the obvious, so it's hard to know what more to suggest. if you're doing any methylation support, you might re-examine dosing. I think I told you how earlier this year, before I knew I was CBS +/-, I was taking NAC for a cough and it ended up making me horribly depressed and elevated my liver enzymes to a concerning level. I stopped it and the depression lifted. But all summer, I had no drive. I wasn't depressed, but normally I have long "to do" lists and find pleasure in crossing things off, "accomplishing" things. This summer, my to-do list was untouched, and even work tasks got pushed aside for as long as I could manage.Very unlike me. A few weeks ago, I added a B complex (took me a long time to find one w/o B9 and B12). This weekend, I went nuts attacking projects that had languished all summer. I finally feel like myself again. My point isn't to rush out and get a B complex. You're instincts about the SSRIs are probably dead on. I only mention my anecdote because it might help to just re-examine everything he's on and consider any tweaking now that he's further along in lyme treatment, having puberty and growth effect dosing, hormones altering the balance of things... You're both in my thoughts!