LNN

I have enormous respect for Dr L and owe her a ton of gratitude. She saved my sanity more than once in the early days. She is awesome when you're with her. But do realize that her achilles heel is returning calls. If you do see her, be very prepared with your questions and make sure you have everything you need before you leave her office (a full understanding of scripts, renewals, what Plan B is if Plan A doesn't work before you see her at a follow-up appt...) It's very difficult to make contact in-between appts. I don't say this to dis her. She's very balanced and wise. But everyone has their weak points and returning calls is hers. So just go in knowing that. You often need to call several times in a week. We stopped seeing her because she's 600 miles away and because DS was eventually dx'd with Lyme, which she doesn't treat. But she was my lifeboat for the first two years.

Last Saturday, I started work at a center that teaches social skills to kids with ASD, ADHD, PDD etc. While the kids are in their 2 hr class, another mom (DS9 has moderate ASD) and I met with the parents for education/support. The current group consists of 3 sets of parents with kids who are btw 3-6. They aren't new to the world of autism - most have had the diagnosis for 2-3 yrs. But they have mostly followed the course of traditional treatments, primarily ABA therapy and birth-3 services. They work with developmental pediatricians but don't seem to have any idea what I mean when I use the term "biomedical approach" and don't seem to know there's a group of parents who feel many ASD symptoms can be "fixed" or mitigated with complimentary or integrative medicine. I didn't get the sense they knew what a DAN was. None of them seemed to have reached a point where they felt the need to move beyond a pediatrician's advice. This Saturday, we want to talk about nutrition. One boy will only drink Pediasure and consumes little else in terms of food. One boy eats at McDonalds several times a week - craves it, esp. their french fries. Now, I remember a few years ago when I was talking to an autism advocate at AutismOne and I mentioned that I'd given my son a McDonald's milkshake and she acted like I'd just fed him arsenic. Today, I see the milkshake for the evil that it is. But back then, I was like "whoa - don't get your undies in a bunch. It's just one milkshake!" So I have to remind myself that the journey is a long one and I too was once oblivious to the gut/brain connection. My question for all of you is - do you have any short (1-2 pg) articles that nicely explains the gut/brain connection and why getting the right foods - or the right supplements if they won't eat the right foods - is so important? Something that doesn't dig deep into methylation, mitochondria, et al but does go beyond "veggies are good for you and sneak them in when you can". I've been searching the net but can't seem to find something meaty enough without producing a deer in the headlights response to a newbie. Anyone have any links?

I'm so sorry for her continued decline. One caution - unless something dramatic has happened in the past few months, Duke is neither Pandas experienced nor Pandas friendly - at least not in their mental health departments. Perhaps you'll have better luck via the autoimmune route. But if you happen to get the feeling they're steering you in a direction you don't want to go, don't assume it's because they know Pandas. Trust your gut. You might want to schedule an appt. with dr Latimer in Bethesda MD - a neurologist with ties to Georgetown and exceptionally Pandas knowledgeable. It's worth the travel. Good luck!

Yasko spends a lot of time talking about the various mutations she's found that effect methylation and more importantly to me, neurotransmitter production/balance and detox functioning. Treating my daughter's MTHFR has helped a lot. But she still complains of chronic fatigue. Her blood work for anemia, thyroid, infection - all show normal. So it has me thinking there's still a methylation block. By treating mthfr, maybe we just moved the block downstream. But while her mood is far more stable, she often doesn't enjoy activities with the energy she should have. She tires easily yet often takes a long time to fall asleep. She doesn't wake feeling refreshed. Does she have a problem with amonia/Krebs cycle? If so, we can work on that. But I'm too broke at this point to keep throwing supplement spaghetti at the wall to see what sticks. So I'm hoping to see if there are other mutations that can be addressed - if something else is a road block. For my son, he struggles to detox any time we get too aggressive on lyme treatment, struggles with brain fog despite IQ testing that shows above average. I know both zinc/B6 and phosphatidylserine have helped his brain fog significantly - both Core and PS100 have been awesome supplements for him. But I want to know if we can find any mutations that can help with detox, prevent tics from showing up when we use tindamax, and maybe get another big gain in the brain fog department. Each leap has been significant but we're not totally there yet. But with recent cognitive testing, I feel validated that the gnawing feeling I've always had that he was "trapped" inside is real. It's not just mom wanting her son to be someone he's not. So I'm on a hunt to remove a few more road blocks. You know me - give me a handful of enzyme abbreviations like COMT, PST, CBS, MAO - and I'll be a happy camper for months. Some people like to curl up with a good harlequin. I like to snuggle with my laptop and put epigenetic puzzle pieces together.

You asked about CBT and I think it's awesome you're willing to use CBT. Also know that for the OCD, you'll need to use ERP (exposure/ritual prevention) - a form of CBT specifically for OCD. I think CBT tools really help the kids understand what's happening to their thoughts and gives them tools so they feel less like a victim. So yes, I'd definitely be reading up and looking for a good therapy resource. What to Do When Your Brain gets Stuck by Dawn Heubner is an excellent book for younger kids and Talking Back to OCD by John March really helped me understand my role as a parent. You can use the OC Foundation's site to look for a therapist http://ocfoundation.org/FindHelp.aspx but many here have ultimately gone to USF's treatment program for intensive therapy. But all that said, it's highly unlikely your child will be able to fight the OCD at the peak of a Pandas episode. The fear is just too intense. So it will help her to introduce the concepts and practice the tools but don't expect a great deal of success until symptoms begin to subside. On the wind-down of a flare is when most Pandas kids are finally able to take the tools and use them with success (but still introduce the tools and practice beforehand so that they're primed to actually succeed on the wind-down). There are some really great older posts on ERP for young children by Meg's Mom - a former member. So use the search feature and go back to the 2009-2010 time frame looking for "cbt", "erp" + "meg's mom". Also, if you'd like to brainstorm any ideas on how to tackle specific rituals, some current members are also ERP experts and can probably give you suggestions for setting up exposures and rewards for a 6 yr old.

MomtoJake - yes, I will definitely PM you once we get results. How long did you have to wait for the results? Hoping for the 4 week wait and not the 6 week wait. 4 weeks in my birthday, so would make a perfectly geeky birthday present.

I've heard this concern from others as well but I'm not sure I understand it. I'm paying for this test out of pocket and without a doctor's signature - no insurance company or doctor will have a record of my ordering this test. Second, I've selected the "do not share" option for the test. So 23andMe cannot share my info with other researchers outside of the company or on the member forums in an aggregated form. Third, after I get the results and digest them, I'll submit a written instruction telling 23andMe to permanently delete my records. Granted, during the few months they have access to my data, they can pool it into current research, so there is a small risk my family data will still get out there. But I think getting an idea of how to fix various issues outweighs this risk. Finally, in 2008, congress passed and Bush signed the Genetic Nondiscrimination Act which prohibits the use of genetic information in health insurance and employment. The Act prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also bars employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions. So I can understand a certain angst about having very private data be stolen/abused but I'm not sure I fully understand your concerns. Can you help me out (sincere question - even tho it's too late for me to change my decision). Landamom - thanks. I do know about genetic genie - just haven't explored it yet and suspect I'll still have to do an awful lot of leg work - can't see why 23andMe can't at least translate the results into some understandable format in the first place. But I guess that's the extra value Yasko adds for the additional $350 for her test. If I only had one kid, it might be worth it. But with two, I can't afford the $700 for someone else to do the interpreting. Cobbie - I too would love to know what you're doing for mitochondrial support and if it's helping...if you don't mind sharing

No - I didn't mean ibuprofen helps end a flare. It helps reduce the inflammation and resulting behaviors. You need to eradicate the virus in order for the flare to truly end. When my DD had epstein barr last year, l-lysine helped kick its butt when other things didnt. You can google and find pubmed research on lysine and viruses (also works great for cold sores). Still, ibuprofen should continue to help with the inflammation while you treat the virus. (FWIW - some love Enhansa - for my son, it doesn't come close to being as effective as motrin).

Ibupprofen works wonders. In a flare, we dose it every 6 hours, 2-3 times daily. Then taper to once a day as things calm down, then stop when things are good again. Curcumin and tumeric are other options - Enhansa is a product used often as a natural alternative to ibuprofen. You can also help support the liver while taking ibuprofen by taking milk thistle and taking it with a small amount of food to help with any possible stomach upset.

We've had great experiences with rifampin - but as Mama2alex said - it was for lyme. Have not heard it being anti-inflammatory and since we've used it to kill bacteria, it's actually been inflammatory for us in that it causes inflammatory herxes. But worth it in the end. FWIW - omnicef (cefdinir) also crosses the BBB

Re-posting from the MTHFR Support Facebook page: https://www.facebook.com/mthfrsupport/posts/135618269932905 The Work of Dr. Amy Yasko Teleseminars Tuesdays at 5:00pm PST, 6:00pm MST, 7:00pm CST and 8:00pm EST The dial in number is 805-399-1000 The participant access code is 380752 Welcome everyone! My name is Tricia Stenzel and I will be moderating this series of teleconferences on "The Work of Dr. Amy Yasko". These teleconferences will be happening every Tuesday evening, 5:00pm PST, 6:00pm MST, 7:00pm CST and 8:00pm EST starting January 22, 2013. As some of you know I used to be an Officer/Patient Advocate with a Lyme Disease Organization. I have had numerous people come to me about why they are not getting well from their various health issues. I wanted to help these people, and I also wanted to recruit the best Doctors in my opinion to help us understand what is going on with our bodies and explain things to us so that we can better heal. I am honored that Dr. Amy Yasko has asked Dr. Nancy Mullan and Mrs. Erin Griffin to help us with this. I would like to thank Dr. Yasko for her brilliant work and for asking us to present these teleconferences. The topic for January 22, 2013 is Your Single Most Important Biochemical Process: Methylation Your body has a "traffic light" for its biochemical pathways. Dr. Nancy Mullan, with Mrs. Erin Griffin, discuss how it can work well, what can go wrong and what that means for you. You can listen to the call and see the slides that Dr. Mullan will be explaining by logging on to https://www.freeconferencing.com/meetings/437-519-566 Enter your email address and name to log in. This one's for YOU! We want your input. We would like you to tell us what you want to know. We want to know if you need something repeated. You can send your questions to patriciastenzel@gmail.com Your questions can be about anything. They do not have to be about the particular week's conference subject. The teleconference will last approximately one hour. There will be approximately one half hour of lecture and then I will have the opportunity to ask Dr. Mullan and Mrs. Griffin your questions. We will be adjusting what we are doing as we go along to make this teleconference the most satisfying experience for you. I urge all of you to listen to this important information. The conference call in number is (805) 399-1000. The participant access code is 380752 This is a US toll based phone number and depending on your long distance provider you may be charged for this call. You may have unlimited long distance. If you do not, long distance charges will apply. All teleconferences will be recorded. Call 805-399-1099 to hear a replay of the teleconference This and other pertinent information will be posted on Dr. Mullan's Facebook page, my Facebook page and Dr. Yasko's Facebook page.

Had the same experience as PowPow. It was very helpful - short term. But my son had undiagnosed Lyme at the time, so with a chronic infection, there was no way Pex was going to be the full answer for him. At the time, we had Cigna - which used to cover it but apparently changed it's coverage policy a few months ago and no longer covers it. It was $18K negotiated rate, plus some other fees that went along with the pre-admitting consultation, plus travel. Dr L was our neurologist at the time, we had it done in DC as well. At the time, I thought it was great and do think it's very helpful for a child in crisis. But I would exhaust all other options first if it were a matter of paying out of pocket. Like PowPow, I am a big supporter of ERP and CBT therapy. Steroids also helped us at the worst, but again, due to chronic infection, the results didn't last. Have you investigated other infections? Is she only on one abx or a combo? Sometimes a combo works better. Are you ever seeing a solid recovery between flares or is she constantly sick now?

Yeah Smarty - I got the eye roll when I told my DH about the test too. But my dad sent me some Xmas money and I told him that I was using it to buy one of the two test kits I needed - as a Xmas present for myself. He then sighed and told me to go ahead and order the second kit too, since he knew I'd end up doing it anyway. No - never heard the idea of a false negative on the KPU test. Since you seem to be having luck just monitoring the copper/zinc balance, seems that's the way to go. Dr Greenblatt (http://www.jamesgreenblattmd.com/) says in his anorexia book that one quick test for a zinc deficiency is a zinc taste test. He has his anorexic patients drink some sort of zinc solution. If it has a strong taste, you're not deficient. If it has no taste, you're very deficient. Mild taste puts you at a mild deficiency. He feels blood tests for zinc levels are unreliable and puts more stock in urine or taste tests. Never took the time to try to corroborate his idea by finding research, but I know that my KPU son takes 4 Core supplements/day and he says they have no taste. My non-KPU DD balks at taking even 1 Core (I try to give one to her when she's sick for the zinc support) and she says it tastes awful. If I take 2/day, they have no taste. If I take 4/day like I should (that's when I feel best and dream best), they start to have an aftertaste. So seems to be true anecdotaly but no idea if it holds scientific water. I'm starting to view PANDAS/PANS the same way I view autism. I think ASD is an umbrella label for maybe a dozen different and sometimes co-morbid issues. One kid may be aspie b/c he has one issue with methylation. Another kid may be severely autistic b/c he has issues with mercury, detox, viruses and leaky gut. But the end result is a cluster of symptoms that get described under one label. I think the same is true for PANS. Similar end-result symptoms triggered by an autoimmune response to infection. But what causes the autoimmune response is, I think, different for different kids. One may develop an autoimmune response b/c a leaky gut caused a break in the BBB. That kid heals his gut and recovers fully (over time). Another kid has methylation defects, a chronic lyme infection and maybe a detox problem. That kid struggles for a very long time and doesn't get well until all the issues are addressed. Both have/had PANS, both need abx to eradicate the infection and prevent new infections during recovery. But the reasons/causes of how they developed the Pandas autoimmune response are different - which means that the recipe for recovery and "cure" would be different too. Some of my friends have kids who've recovered and now only have mild relapses, which the moms stomp out quickly. But the things that got them to that point haven't been enough for my kids. We've had to go on this long, strange journey to get closer to full recovery. Partly due to genetics, partly due to diet, partly due to length of illness, partly due to lyme, partly due to how crazy I am compared to my friends. But if you do persuade DH to let you do the test, here's a good comparison between 23andMe and Yasko http://www.mthfrsupport.com/articles.html Can't beat the 23andMe price - but it will suck in 4 weeks when I have to learn how to interpret the results. Thankfully, there are a few apps you can use and a mom who used to be on this forum just went through this and will be getting lots of emails from me when the time comes.

Well, you have a lot going on right now, so I'm not sure it's possible to tease out the role of methylfolate dosage. To answer your question - I stopped methylfolate and all supplements entirely (except probiotics) for 2 days in order to do a urine test. At the end of the second day, I saw a dramatic improvement in the rages - but realize she wasn't dealing with bartonella or any other infection at the time. I then added back one supplement at a time, saving the methylfolate for last. When I added the methylfolate back in at the old dose, I saw a return of lability within 2-3 days. So for us, it was pretty clear. At that point, I took her back off and stayed off for a week. At the end of the week, I saw a gradual return of mood issues. So I knew I git ugliness at 400mg daily and ugliness after 7 days of nothing. That became my range of what was too much and what was too little. Then we tinkered until we settled on her current dose of 67mcg every other day (67mcg = 1 drop of Yasko's methylmate B liquid http://www.holisticheal.com/methylmate-b-nutritional-supplement.html) It seems absurd that such a low dose should do anything. But here we are in the 3rd week of January - DDs worst month of the year where she traditionally descends into madness for the past 3 years, and she's steady. No mood issues. So go figure. (DD is 53 lbs) In your case, it's going to be much harder. You don't want to stop the rifampin or even the burbur if it's helping. But both Yasko and Ben Lynch suggest 400mcg/daily as a general dose for children as a starting point (both also say you have to tweak from there - everyone has different needs based on unique combos of other genetic mutations and diet). So maybe discuss this with your doctor and try changing nothing except the methylfolate and see what happens for a week. Alternatively, you could try a one-time experiment using niacinamide (B3) as described in the link I posted above (http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/). During a rage, give DD 50mg of niacinamide ( I opened a 500mg capsule and sprinkled what I thought was 1/10 of it into some food b/c I couldn't find smaller doses). If the rage subsides within a short time (it worked on my DD in 45 min), then that might be a clue the overmethylation is behind the rage. If it didn't do much, then that might point to herxing instead. Of course, Dr O has way, way more experience at this, so these are just ideas to talk about with her, if you can get a moment of her time. But if you find yourself tearing your hair out one evening, or over a weekend, a one-time niacinamide test or a few days on a methylfolate holiday (w/out any methylfolate) might give you some clues. That's how we ended up figuring it out for my DD. (oh - and just to muck things up more, my DD does not do well on NAC. Tried it twice - both times before treating MTHFR - so that may have had something to do with it. But one other option is to stop the NAC and see if you notice any difference after a week - just to rule it out as a contributing factor).

I'm in the process of doing 23andMe genetic testing on my kids (sending in sample today). https://www.23andme.com/. This is similar to the testing Amy Yasko does for methylation but 23andMe is $99 and Yasko is $450. The downside is that 23andMe gives you raw data that you have to decipher yourself (or there are people on methylation support groups who will do it for you for a nominal $50 fee). Yasko gives you a report that interprets the data for you. I don't know that I'm going to find any genetic smoking gun for Pandas. (Tho Dr T seems to think he may have found one - but I haven't heard what it is). What I am hoping to find is clues to why Pandas presents the way it does in my kids and how I can best find a detour around issues. In my kids cases, I think Pandas or Pans is the name of the end result of a series of perfect storm issues - methylation issues that prevent the body from handling stressors like infection, detox, proper neurotransmitter production, proper mitochondrial support)... Put these things together, toss in a chronic infection and viola - they developed PANS. In my thinking, I can't change that. I'm personally skeptical that treatments can 're-set" the immune system. I think they can alleviate symptoms from a specific flare. But I'm not convinced they can prevent future flares or change the way the body makes B cells in the bone marrow. JMHO - not trying to start a controversy. But what I feel I can influence are the other factors that go into a perfect storm. If I can find a way to help my son detox better or support my daughter's methylation cycle so she can produce sufficient amounts of serotonin, then other stressors have less of an impact on the system. Like adding sand bags to levees during a storm to prevent catastrophic damage. When I came across Yasko's theories, it just clicked with me. Build bridges over genetic breaks in the road and I can greatly lessen the impact of what my kids struggle with. I know not everyone feels this way, but I've had success with it so far. So now I'm doing the full workup. But I don't think I'm going to find anything that "causes" Pandas. Just mutations that contribute to my own kids' issues.

Saw this article in the NYT today but it's very vague. Talks about finding 4 "chemicals" that turn autoimmune diseases "on" or "off" and are tied to the immune system. But the article never mentions the names of those 4 chemicals. Wondering if anyone has access to the full article? The summary is here: http://www.nytimes.com/2013/01/21/health/study-pinpoints-what-activates-disease-causing-genes.html?_r=0 In their paper, published Sunday in Nature Biotechnology, the researchers reported measurement techniques that enabled them to sort things out. They found hundreds of chemical tags but only four that seemed truly related to the disease. Those four were in a cluster of genes that controls the immune response and that was known to affect the risk of rheumatoid arthritis, said Dr. Andrew Feinberg of Johns Hopkins, a lead author of the study. In particular, the tags were in a gene called C6orf10 whose function is unknown. The chemical tags may help determine if a person with a gene that increases risk of developing a disease actually gets the disease. There were people in the control group who had gene variations associated with arthritis risk, but they did not have those four chemical tags and did not have the disease.

Oh, I blame Pandas for all sorts of things - certainly you can blame it for typos! Ok, glad you're not giving B3. I too once thought about using B3, with all the good stuff I read about it. Until I came across how it works in methylation. The stuff you're giving seems good for the C677T mutation (tho you might ask your Dr about adjusting doses of methylfolate to see if that helps the rages - my DD uses a ridiculously low dose - every other day. When I've done every day, she starts to get agitated again. So playing with dose is just an idea if you get frustrated. Gaba also helps calm both my kids on bad days(one has MTHFR mutations, one doesn't). We don't use Gaba daily - just when they're in rough patches. What I don't see for your DS is anything for A1298C. Are you treating that or just focused on C677T? I can't find tons of info on how to supplement for A1298C - Yasko talks about BH4 which you can't get in the states. She also mentions TMG but not many people talk about how well it does or doesn't work.

Curious why you're supplementing B3 - which is a methyl-taker. Usually, when someone is hetero or homozygous MTHFR, they're undermethylated to begin with and you'd avoid excess B3 (which uses up methyl groups) because you don't have enough methyl groups to begin with. When I overdid the methylfolate for a time while we were figuring out the proper dose for my DD, she became temporarily over-methylated and I used a small amount of B3 ( 50mg niacinamide)to counteract the "overdose". I used this as my guide http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/ Wondering if the mood issues you're still seeing are related to the niacin?

With the low B6, you may be having problems with detox, which is my son's case. He has pyroluria, a genetic issue (sorta related to methylation) that causes him to have a B6 and zinc deficiency. Supplementing B6 helps him a lot and is a key ingredient to making glutathione - the body's master detox agent. Here are some good articles on pyroluria and mood issues: http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder (starts on Pg3) MTHFR can also contribute to rages, rigidity, etc. It was THE issue for my daughter - who looks like Pandas (Higher Cunningham numbers than my Pandas son) but she's never been full blown Pandas and doesn't have pyroluria. Yet we treat with a ridiculously low amount of methylfolate and she's been stable for more months in a row than she's ever been, even now (January has always been her worst month for the past 4 years and yet we're at the 19th with no symptoms at all (knock wood).) I think you can have both Pandas and methylation issues and/or pyroluria. I think they're inter-related but not the same thing. IVIG was a very negative experience for my son and I'd never consider it again. But then, he had undiagnosed Lyme at it caused a huge herx that lasted 10 weeks. So it's possible that with different precautions and lots more detox focus, we might've avoided the worst of it. I am also in the minority of parents who hasn't seen good things come from it. So I'm not trying to dissuade anyone from it. It just wasn't part of our solution. Because of my son's response, it's never something we considered for my daughter. Last month, I tried to write a "MTHFR for Dummies" piece for a log site I contribute to. I tried to explain how MTHFR can affect moods. It's a superficial piece in that you can dig way deeper but when you're just getting into it, it can be very confusing. So it was meant to be an introduction, not an in-depth thing. Maybe it will help a little. http://www.easytolovebut.com/?p=2782

the other suggestion is to go out to google and type "latitudes.org D3" or "Pandas vitamin D". Sometimes I can find a post faster that way than by using the internal latitudes search engine. I just typed "vitamin D3 pandas" and my first hit was 4 threads on this forum: Low Vitamin D Level - ACN Forums www.latitudes.org › ... › PANDAS and PITAND Dec 16, 2009 – He explained that vitamin D is crucial to immune system function, so it makes sense. My son just did IVIG last week for PANDAS and will ... VITAMIN D & CONFUSION‎ - Dec 6, 2012 Vitamin D - how fast could it work?‎ - Sep 16, 2012 Could a fecal transplant and Vitamin D cure PANDAS?‎ - Aug 26, 2011 Low Vitamin D and Chronic Infection‎ - Mar 31, 2010 More results from latitudes.org » Sorry I can't paste the link - when I click on it, it brings me to the first thread. But generally, if I can't find what I'm looking for easily, it usually helps to go out to google and search, using Pandas, latitudes or something like that along with your key phrase.

:wub: Susan :wub: Tho I miss all her great advice here, she's still working with IOCDF and the researchers to move things forward. IOCDF now allows you to direct your donations toward specific research. So if you happen to have the ability to donate to a charity, you can give to IOCDF and ask that your contribution be earmarked for Pandas. They have funded some of the researchers we all know and love. The ability to point doctors to this article and other info on their site gives parents credibility and for that, we owe them thanks and any financial support we can muster. The annual conference is in Atlanta this year, so maybe you southerners can get a chance to thank her in person in July.

Since you may have had illness since your pre-teens, it's hard to say what might be from Lyme and what might be a set of symptoms that could be separate. Aside from reviewing your remaining symptoms with your LLMD, you may want to look into the topic of methylation. Methylation is a type of "metabolism" where certain genes turn on or turn off chemical reactions millions of times per second. There are some doctors who propose that by identifying any unique genetic mutations you may have that effect methylation, you can use supplements to bypass any inefficient genes and get things working properly again. Many of the genes involved in methylation effect neurotransmitters, the immune system and the body's detox (transsulfuration) systems. You can look into: Dr. Amy Yasko http://www.dramyyasko.com/ , Rich Van Konynenburg http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/ and Dr. Ben Lynch http://mthfr.net/ Dr. Bill Walsh has also written extensively on the subject of methylation. His latest explanation of the role methylation plays in emotional health can be found in his book Nutrient Power http://www.walshresearch.mybigcommerce.com/nutrient-power-book/ You can get genetic testing from Dr Amy Yasko or from 23andMe and you can find a methylation support group on facebook called MTHFRsupport - they also have a weekly blog radio show and a web site http://www.mthfrsupport.com/index.html Your symptoms may be residual Lyme, but many of us have found that methylation plays a role in getting back to 100%.

I always came across "epstein barr - the virus that causes mono" - implying they were slightly different - but never came across an explanation of how. In my simple mind, I decided mono seemed to be a teen version of EBV but the symptoms are essentially the same as far as i could ever tell.

L-lysine is an amino acid - found in many foods and essential for proper body functions (along with many, many other nutrients). It acts as an anti-viral against certain viruses, including epstein-barr, herpes viruses and HIV. It gets rid of cold sores (herpes) and canker sores inside the mouth. You can google and also find research papers on Pubmed. It's OTC - can get it on amazon or any health food store. My grocery store even carries it in the vitamin section - CVS probably does too.

My DD had epstein-barr - which causes mono - last yr. She only had a fever in the beginning but had lethargy and a mild sore throat that lasted months. L-lysine is what did the trick for her. She felt better within days of starting it and was back to school 2 weeks later.