LNN

You may want to read Answers to Anorexia by Dr James Greenblatt http://www.jamesgreenblattmd.com/jgreenblatt-anorexia-overview.htm. He feels there's a strong and documented link between AN and zinc deficiency. It's an easy read and offers very practical advice and testing ideas. Zinc is also essential to the immune system so a deficiency could lead to multiple problems. Her not eating had nothing to do with OCD. She tested negative for H Pylori, Celiacs, normal endoscope. Between a zinc/b6 supplement and treating my DD's methylation/folate deficiencies, she eats like a normal human being for the first time in her life and is now normal weight.

I think you need to read the Jones info carefully. I think the section that says you need to take folic acid is talking about why homocysteine is bad for everyone, regardless of MTHFR mutation. The way to lower homocysteine is to take folate. Elsewhere, it says if you have the mutation, you need to take a methyl form of folate. But I agree, it is very confusing the way it's written. The "danger" of taking methylfolate - well, let's say you have the MTHFR mutation of C677T. In this case, no, there's no danger of taking methylfolate, so long as you start slow and stay balanced with other nutrients. But let's say you don't have a mutation. In this case, you could still take the methyl form of folate with no problem. However, you'd need to make sure that you were regulating your other sources of regular folate - the stuff that comes from a multivitamin, fortified cereal, other foods. Because if you have no mutation, then you'd be taking say 800mcg methylfolate - on top of the other sources. This would encourage a lot of recycling of homocysteine. Not bad, except that homocysteine is used for 2 purposes. Homocysteine sits at a fork in the road. One fork uses methylfolate + methylB12 to recycle homocysteine in the methylation cycle. The other fork takes homocysteine and converts it into glutathione. If you had an abundance of methlyfolate, you could theoretically cause too much homocysteine to be recycled in the methylation process and not leave enough for glutathione. If you have a mutation, this is less of a concern, because the regular folate you're taking into your body in the form of multivitamin or fortified cereal is only partially being used, depending on how severe your mutation is. So by adding methylfolate, you get "just enough" into the system. So it's not like methylfolate hurts someone who doesn't have a mutation. But in time, you could end up getting too much of the stuff if you didn't keep on eye on total intake of all forms of folate from all sources. You'd in a sense be over-supplementing. Does that make sense?

The idea of methylation and the C677T/A1296 mutations are VERY mainstream. Do a search on PubMed and you get tons of hits. There's no controversy on what methylation does or whether these mutations exist or cause the issues that are listed here and in the links. What you will more likely find is ignorance. Nearly every doctor will know why high homocysteine is bad. Few will know that taking methylfolate is part of the solution. Even fewer will know the connection between homocysteine and glutathione or seratonin. It's just a symptom of the poor training docs get in connecting the dots and looking at the body as one intergrated system. Instead, they're taught to use heart meds for high homocysteine. I sometimes feel likes it's big pharma writing the med school curriculum. But the MTHFR test is very mainstream. Here's the Quest lab # to order http://www.questdiagnostics.com/testcenter/OrderInfo.action?fn=36165.html&labCode=NEL When we ran it, the insurance negotiated rate was $50 and since we'd met our deductible, our out of pocket was 20% or $10.

Tami - your inbox says you can't accept messages.

My DD7 is heterozygous C677T as well. The treatment for this is lifelong supplementation with methylfolate. Most of us take a multivitamin or eat cereal fortified with folate. Or when pregnant, we're told to take extra folate, as a deficiency is associated with neural tube defects in developing babies. For people with this genetic mutation, our bodies can't convert the folate in the mutlivitamin/cereal/other foods properly. So depending on how severe the mutation is (if you're hetero vs homozygous), your body can only use 50-70% of the folate in your body (if you're heterozygous) or as little as 10% of the available folate (if you're homozygous). The body turns folate into methylfolate. Methylfolate, in combination with B12, converts homocysteine back into something called methionine, which is then converetd into ATP (cell energy) and SAMe (which leads to seratonin). This is a circle - one things converts into another over and over. It's called the methylation cycle. Without methylfolate, not only does your body not recycle homocysteine, it also doesn't make this methylation cycle turn very well, thus reducing your body's energy and seratonin. The build up of homocysteine leads to heart disease, stroke, macular degeneration and a host of other issues. Here's a good overview that's easy to understand http://www.lef.org/protocols/heart_circulatory/homocysteine_reduction_01.htm And as Nancy said, an increase in homocysteine can also lead to a deficiency in raw materials needed to make glutathione - the king of antioxidants that help your body shed damaged cells and toxins. So all in all, high homocysteine and low amounts of bio-available methylfolate is a bad thing for many reasons. When you have this gene mutation (the gene is called MTHFR and the mutation I'm talking about is the C677T - the A1298 has different implications) - the treatment is to supplement with methylfolate - a type of folate that's been pre-converted - or methylated- into what's needed to complete the methylation cycle. When you first start, you want to start slow. Think of a dam of water that's built up. You don't want to open the flood gates. You first want to start a slow drain. So for my DD7 who's 47 lbs and has neuropsych symptoms, we started at 200mcg of methylfolate and did this for 2 weeks. Because it's hard to find such a low dose, we bought Amy Yasko's liquid methylfolate called methylmate (http://www.holisticheal.com/methylmate-b-nutritional-supplement.html) We built up to 3 drops and now when the bottle is gone, we'll switch to a pill in the 800mcg range. Once my DD had been supplementing for about a month, she felt better - the mood swings stopped. But she was still complaining of periodic fatigue. So we added the methyl form of B12, aka methylcobalmin. Together, the methylfolate and methylB12 help her efficiently complete the methylation cycle, helping the body create cell energy, seratonin and reduce/recycle homocysteine. Our LLMD understands methylation and helped us do the testing and discussed our plan. But some of this I've done on myself as well, as the gene likely comes from me but I don't have a supportive doctor to do testing (that's in the list once we get the kids out of treatment). I think for our kids, who have infection as well as a high probability of having "broken" systems such as methylation etc, having an integrative doc on board to help is a really really good idea. But if it's just impractical, I think you can read up and do some things on your own, so long as you take it slow and balance things. Too much of any single supplement can cause problems of its own. Tami - I'll PM you the name of an integrative in southern CT who knows this stuff inside and out.

I second Nancy's advice to make sure there are no underlying infections. When my son couldn't sustain remission, it was because he had lyme as well as pyroluria (which is a genetic zinc/B6 deficiency). I would also make sure underlying methylation issues have been explored. My kids both found remission by looking at this. As for timing, when I was doing as much research as I could prior to my son's HD IVIG, it seemed that the published research was focused on using IVIG to halt a current flair, not as a cure or way to prevent future episodes. It was more of a tool to end the flair. I know that some doctors use the word "cure" and feel repeated IVIGs can eventually stop the body from having an autoimmune response. Based on a recent thread, it seems a mixed bag as far as this goes. So I think it depends on what you hope to accomplish from IVIG. The only research I ever found suggested it be done during a flair (of course, kinda hard to get insurance approval and schedule an appt ahead of time if you don't know when the next flair will be). I think different doctors have different views on the subject.

One of the things that helped my DS when he was severely depressed about all the pills and the whole multiple disease issue (lyme+Pandas+pyroluria) is that we talked about people worse off than him. There's a girl in his school who's in a wheel chair. He has friends who have lost parents or have their own illness challenges. And then there are the "golden" children - the ones who seem to have the whole world at their feet and who don't seem to have challenges and say things that are incredibly insensitive to those who do have challenges. These kids just suck the life out of my son. So we talked about sack races and how in the sack race of life, some kids only have their own feet in the sack. Others have small stones. And some, like my son and the girl in the wheel chair - feel like they have 10 boulders in their sacks. Then we compared the character traits of the golden kids to the boulder kids. And I emphasized how in general, the boulder kids are kinder, wiser and stronger. I played up the gifts that adversity brings. I talked about hardship stories of people my son could admire - Nicola Tesla, who had wicked OCD; Einstein, who was a horrible student; Wilma Rudolph, who won Olympic medals after overcoming polio. Yes, being sick sucks. But it helped my son to have his horizon broadened a bit, to realize he had plenty of company at his pity party table. And he had the benefit of knowing that his situation was temporary. His classmate is never getting out of that wheelchair but my son was going to be able to take boulders out of his sack one by one and be "normal" after we got to the bottom of things. he didn't wake up the next morning all smiles and sunshine. But it did sink in and it did help his resolve. It did give him perspective that there are plenty of people who'd trade places with him, despite his crappy situation. The other thing that's helped is tryptophan, which helps seratonin and is a "natural" approach to treating depression. If mortin doesn't do the trick, it's something else to consider. It's helped my daughter immensely with her negative self-image and intrusive thoughts. Finally, in addition to putting things in (motrin, steroids, tryptophan) make sure you do detox to help toxins come out (resveratrol, CoQ10 or alpha lipoic acid as anti-oxidants), binding agents, milk thistle...These things will help post-IVIG as well. I know how hard this is. I hope you're able to move up your appointment and help your son hold on to hope.

Sorry Nancy, no huge insight from me. The only thought I had, given the location on the lower arms, is some sort of photosensitivity. Is something he's taking - or some combo - related to increased sensitivity to sun? I didn't see any photosensitivity associated with EPO when I did a quick search, but agree with you. Discontinuing that would be a logical first step. Would a sodium channel blocker cause endema? Seems odd it would be localized to the arms if this were the case. Very odd... Hope it's something benign!

I think this answer is different for everyone. I think in general, flares are rarely as bad once you have a dx and a supporting doctor on board because you have more tools at your disposal to act quickly. But you'll get mixed answers from the forum. I know kids who only see mild issues, parents up the abx dose and do ERP for a time and then they're fine. Others need stronger intervention. The ones who don't need much aren't on the forum anymore. But it really depends on the child.

I looked into inositol extensively a few years ago when my DS was severe. Here are the articles I found helpful- a. http://en.wikipedia.org/wiki/Inositol b. http://www.nutritionj.com/content/7/1/2 c. http://www.naturaladd.com/resources/articles/natural.html d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html e. http://findarticles.com/p/articles/mi_m0ISW/is_255/ai_n6211958/ f. http://www.ihealthtree.com/inositol-powder-8-oz-source-naturals.html There may be more recent ones now. This was 2008. At least one of these has dosing info in it. Like an SSRI, you start low and build up, staying at one dose for a few days, then adding a bit more. Best to give the doses throughout the day rather than just once a day. Common side effects include gas and cramping. It's slightly sweet. You can mix it in juice or we just dumped it on our tongues and chased it down with a swig of water. Tastes like confectioner's sugar. It helped up thru crises, but after a time, it didn't help as much as we needed. My son no longer has anxiety. My daughter now uses tryptophan instead and this seems to be much more effective for her. As we address methylation and she builds up on methylfolate and methyl-B12, she's been able to lower her dose of tryptophan.

It is my understanding that it should be weaned. I believe your body comes to rely on it and needs time to adjust to the loss - same as you'd taper an SSRI, tho I believe you can taper inositol more quickly. I tapered my son over the course of 3? weeks and my daughter over 2 weeks - however, she was on a much loser dose (2grams vs his 5 grams).

Mar - here's a thread that talks about the test http://www.latitudes.org/forums/index.php?showtopic=17401&st=0&p=139120&fromsearch=1entry139120 You can't order it from a regular lab. But this thread lists two of the labs that will test for it. We did a 24 hr catch, as Klinghardt feels that pyrole levels fluctuate thru the day and a 24 hr sample gives a better result. But the labs say you can do one catch.

Philamom - you know I share your frustration with docs. Have written lots of imaginary scathing letters in my head to them. But the 2 Pandas docs who treated my son didn't see his lyme symptoms (swollen knee, asymmetrical swollen glands) and one said he didn't have it despite the Igenex results that convinced our LLMD that he did have it. So all docs can miss stuff and like it or not, the burden remains on our shoulders. And will even when Pandas/Pans becomes more mainstream. Few will ever have the ability to connect the dots the way we do. And EAMom, I absolutely believe rapid diagnosis and treatment is critical. But my DS was on abx for plenty of infections as a toddler -sometimes even for 21 day courses - and he still developed Pandas. Unless someone had detected his zinc/B6 deficiency as a toddler, unless we'd started looking at my daughter's methylation problems in preschool, I think both kids were going to end up with PANS regardless, because the cracks in the foundation were there, waiting to be cracked open. I don't think this is necessarily true for everyone, but I don't think abx alone would've prevented my kids' issues. No way to know for sure, but that's what my heart tells me. As for the article itself, I think it's a reminder that all the treatments we have at our disposal carry risks and it's important to not get complacent. My son took tindamax for a time and I lost a lot of sleep over its potential as a carcinogen. Doxycycline carries risks for developing teeth and sun exposure. IVIg carries risks as does pheresis. Doesn't mean I haven't taken those risks, but it's important to do so knowing what those risks are.

It sounds like a tonsilectomy would be helpful. You could have pockets of strep that aren't being eradicated. In the meantime, one option would be to "pulse" the antibiotics. You give abx for a period of time, go off and then back on. Many bacteria hide in biofilms and retreat into the films when they sense a threat (abx). Then re-emerge when the threat is gone. But you would need a supportive, experienced doctor on board to help with the timing and scripts. In the meantime, one option would be to use something that weakens the biofilms. In the lyme world, nattokinase is used. But again, without medical support, it's not an option. So the things that are available to you are something like mucinex which loosens mucus (similar in characteristics to biofilms) and/or N-Acetylcystine (NAC) which breaks down biofilms. You might want to try using regular dosing of one of these at the same time you give abx. It might help the abx penetrate or get at bacteria that's hiding in a film.

Minimaxwell - this is the movie trailer for the film I asked about on the Mass General OCD forum http://machinemanthemovie.com/ I can't seem to find any info on how they're doing in the fund raising dept or in the actual production of the film. I've had an eye out for over 6 months but no news. It's a powerful movie trailer and could open so many eyes.

I'm glad you're all getting a reprieve from the insanity. I admire your courage at being willing to take up the battle again. My version of prayers are with you - hopefully with the new meds on board, you'll be able to treat without the whiplash of severe mood herxing. You're in my thoughts!

My daughter is allergic to amoxicillin as well. For a few years, she was able to take cephalosporins like Ceftin or omnicef. Toward the end of a 10 day course, maybe around day 8, she'd get itchy and show mild signs of reaction but we were able to finish the course. Six months ago, she tried omnicef (which she'd taken twice in the past) and within 24 hours, was covered head to toe in huge, welt-like hives. We're lucky she didn't have an anaphylactic reaction. Benadryl internally and topically helped but it still took several days for all the hives to disappear. She's on prophylactic zithro and had tolerated bactrim for months at a time. So there are other families of abx available to her. But the cillins and now the cephalosporin families are off limits. If you decide to try a cephalosporin, ask your prescribing doctor about possible prescribing an Epi pen as well. This is a pen-like needle pre-loaded with a dose of adrenalin. You can carry it with you and if your DD started to have trouble breathing, you could jab her with the pen and administer the adrenalin to prevent breathing problems. Kids with allergies to bees or peanuts often carry them just in case a rapid treatment is needed. We have one just in case.

No, not me. I just thanked my senator for voting yes after the fact. PandasNetwork credits Jim Carson and Lynn Johnson. Hopefully, the measure will be taken up - and approved by both houses - in the next session.

I emailed my senator to thank him for voting yes on this and got this reply today: "Unfortunately this proposal was not taken up in the House of Representatives despite its passing the Senate unanimously. As such the intent of this legislation will have to be addressed again next year. Please let me know if you have any questions." Kate McAvoy Legislative Aide Office of Senator John A. Kissel So looks like more lobbying will be in order.

I can't say that this is the only thing to consider, but you may want to talk to your doctor about biofilms. This is a long but fascinating article on the topic http://bacteriality.com/2008/05/26/biofilm/ Basically, bacteria can form colonies and build a protective wall of slime that's nearly impervious to abx. When the abx stop, the bacteria emerge from the bunker pretty unscathed. One treatment approach is to take something that weakens the biofilm and take abx at the same time. Mucus thinners are commonly used - NAC, nattokinase, some herbals I think - even mucinex works on the same principal. It sounds like the bacteria have found a way to hide from, rather than be resistant to - the abx.

You certainly have to put faith in your treating physician, and this doctor has a lot of experience. So I understand where you're coming from. While IVIG wasn't a good experience for us, it didn't do lasting damage and we all recovered. So if you go ahead, just remember detox and anti-inflammatories if you start to see negative symptoms. You say you've tried all the abx but have you tried them in combo? Sometimes one won't seem to do much but if you add a second, the cumulative effect is far greater. So keep that in mind and don't despair if you get to rifampin and still don't feel you've gotten rid of things. You can always circle back and try combos. Or abx plus herbs. One final thought - if you've only tested for lyme thru a standard WB, keep other testing options in mind if you're still struggling by the end of the summer. My DS was negative on standard WB but had 5 inderterminate and/or positive bands on Igenex. High immune complexes, C4a and inflammation markers as well as clinical picture supported the dx. I know you can't do this testing right now with so much coming up, but keep it in mind for later as a Plan B. Good luck with everything!

I've never looked into oxalates - will have to go google. I think a number of things - the Pandas, inflammation, ASD, lyme, blocked methylation - can trigger urinary symptoms. So I can't really say "oh, the cause is x and the solution is y". I'm personally looking into arginine and suspecting overactive bladder because my son's last Pandas flair (mild) resolved in March and his lyme seems to be in check. So I suspect it has little to do with infection or autoimmunity. For years, the doctors have shrugged and told me to just give it time. And maybe that's all I can do. But he's now wanting to have sleepovers with friends and he's very very frustrated with his "issue". So I feel I owe it to him to try some things. Since my big kick right now is methylation (it's been an incredibly successful way to treat some issues for both my kids), the ammonia cycle has always piqued my interest and given me a "hmmm" gut feeling, which I bookmarked and put aside while we dealt with other things. But I keep coming back to it and now need to pursue it to satisfy my "mother's intuition" or else prove myself wrong. Your son has a lot going on right now and with the big procedures coming up, I don't know if you'll ever know the answer to this question. His pot is about to get stirred big time. You can mention it at your upcoming appt this week and get the doctor's take on it. I'd certainly put the question on a sticky note and come back to it after all the dust has settled if the symptom doesn't resolve. Like JAG, I believe that all of these symptoms are the body's way of saying something is amiss. I think pursing the "why" of a symptom is very important. I think your question about overall inflammation is a good one - perhaps the LLMD can do some labs to check for inflammation. Hopefully, this will give you another way to look at the total picture.

When you say UTI symptoms, are you talking about just the urgency/frequency, or pain while urinating? I've never experienced the chicken/egg timeline you describe of giving abx and then having symptoms, except in terms of a lyme/herx thing. But not in a strep/sore throat situation. However, I guess I could envision where you might have a sinus infection, give abx, then the abx help you kill the bacteria and in doing so, the body produces more mucus to help shed the bacteria and the mucus is the cause of the sore throat and sinus-pressure headache. But pure speculation/hypothetical guess. One thing I'm investigating regarding urinary urge is the amino acid arginine. It relaxes small muscle contractions and is implicated in the small contractions that cause overactive bladder. I've made a few supplement changes so I need to wait a bit, but then I'm going to add arginine to see if it helps with this symptom. In my house, I don't think it's infection triggered. I think it's a Krebs Cycle methylation thing. But won't know for a few more weeks.

I would absolutely keep the LLMD appt. I've never seen IVIG discussed as a sole treatment for lyme. If you have lyme, you're going to need abx and/or herbs to kill the bacteria. Some people have found IVIG to support the body and make it stronger, so it can fight lyme better, but alone, it isn't going to do the job. You're going to need an LLMD to guide you on additional treatments 9assuming he/she feels your child has lyme). If you go the the helpful threads at the top of the forum, you'll find several articles that discuss the significance of each band. For my son, IVIG was a bad experience. He had undiagnosed/untreated lyme and had only been on one abx (mostly augmentin). Lyme generally requires more than one abx taken every day. He had what I assume was a horrible herx for 10 weeks afterward. We probably could've done things to help him if we'd had an LLMD on board at the time, but we didn't know better. But the IVIG didn't do much if anything for him in terms of healing. My son had underlying issues (pyroluria) that needed to be fixed and IVIG just wasn't the right treatment for him. I know others have very positive experiences, so I think you really need to know what's going on in the body before you can say whether it could help or not. Have you considered postponing the IVIG until several months after the T&A? My son's T&A brought incredible improvements for several months afterward. If you are paying any portion of the IVIG out-of-pocket, I'd personally consider waiting until you see what can be gained with the T&A and an LLMD-guided abx treatment. If your child has lyme, you're going to need the LLMD and abx for quite some time regardless of whether you do IVIG. So if personal finances are involved, I'd only do the IVIG after giving the T&A and combo abx some time first. JMHO.

We did this testing. C3a was elevated in one, C4a elevated in the other. One had an HLA-DR that was sensitive to mold but not lyme (he's the one who has trouble with herxing). Some of the other Shoemaker markers were elevated, others were fine. So things pointed to "he'll struggle if you have a mold problem, but the inflammation could be from current mold or from lyme). We didn't have obvious mold and didn't have the funds to do ERMI testing or mold inspections. So we did small steps - hauled 6 loads of basement junk to the dump, replaced two 10 yr old carpets that had pet and plant stains (the one that had stains from an over-watered plant was really bad under the padding - the leached soil stain gave lots of food for mold). I found mold all over the outer plastic drum of my washer - when I cleaned that, our chronic coughs disappeared. We found a leak in our roof where a bathroom exhaust pipe vented out to the outside and water had seeped in and gotten some insulation wet. So while we didn't have a super big problem, we had small issues throughout the house. It wasn't "the" thing keeping DS sick, but it was one more hurdle and it helped to do the cleaning/replacing. Mostly with brain fog and chronic cough. We did step up detox for awhile. He took 30 pills of chlorella for about 2 months, on top of his other 15 pills. But it got to be too much and I didn't see any huge benefit and it was shortly after the Japanese nuclear meltdown, so I was concerned about what might be in the chlorella, which comes from the seas between Japan and China. We switched to activated charcoal as needed and a year later, we do very little detox. However, I understand that others have had different experiences and found mold to be a big contributor. For my son, pyroluria was his biggie (plus lyme and Pandas) and for my daughter, it was MTHFR methylation. So I think it's highly individual.