lfran

Just to let you know, we had to find a new pediatrician this January due to a change in insurance. I called and/or visited several practices and explicitly asked them if they would accept us as full-fledged patients if my kids were not completely vaccinated. Several said "no" right up front -- so I kept searching until I found one that said they prefer vaccinations, but they respected and would accept us regardless. Their administrator said that the clinics lose "insurance points" for not making sure that all patients are fully vaccinated, but their practice had decided that their responsibility was to their patients rather than to the insurance companies, which is why they had the policy they did! We have a problem with our pediatrician too. I use them for minor issues and when I get the energy will find another ped. I was just told that if I have not completed most vaccinations (incl the chicken pox) on my child by the time she is 2, that I will have to leave the practice. It made me pretty sad that I have to argue with them about pretty much everything, but this latest pronouncement by the practice is probably the nudge that I needed to get out!!!! Good luck!! Oivay-can you recommend a pediatrician in the morristown vicinity that is PANDAS friendly? Thanks :-)

I posted earlier today that a few days after starting methylfolate supplementation, my DS10 pretty much ended nighttime wetting, which has been a continual problem since he was very little. Now he is completely dry most mornings, with an occasional very very tiny spot. He is MTHFR C677T homozygous, so we know he has methylation and folate issues, but here's this article, titled Decreased Vitamin B12 Levels in Children with Nocturnal Enuresis, that I thought was quite interesting. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302062/ I posted about this earlier, in the MTHFR post. It seems that several of our kiddos are turning up with MTHFR issues. Since so many of our kids also have enuresis, and since there may be a link between the two, I am hoping that as more of us take the MTHFR test, we may uncover an underlying metabolic issue that is behind some of our kids' symptoms. My DS10 also dropped all of his anxieties and debilitating fears shortly after we started this supplementation a couple of months ago. When I posted earlier, others reminded me that this supplementation should only be done after testing and under a doctor's care. I agree completely, although finding a doctor that has experience with this is not easy, so I still want to post about our good experience in the hopes that it may help others.

One more thing -- there is a presciption form of methylfolate called Deplin. It is prescribed as an adjunct to anti-depressants, as it seems to boost their effect. It comes in 7.5 and 15 mg dosages. It is considered a "medical food". So psychiatrists and psychologists might be on board, as well.

We started out with just methylfolate, then saw that methylguard plus has methylated forms of other b vitamins, so added that as well. DS10 is doing great with it. As I posted earlier, shortly after starting it, nighttime wetting basically ended (DS10 had never been dry since babyhood). Also, major anxiety/fears are gone. His teacher also noted greatly improved focus, and noted the date on her calendar. She didn't tell me until 3 weeks after -- when I checked, her notation was about 4 days after starting the methylfolate. It has been about 2 months now and we all see the improvements in focus. I'd love to get more data points on this and am hoping more people on this board will test their MTHFR status and/or start supplementing with methylated b vitamins and then post their results. b

Thanks!

OB gyns are on-board. My new gyn knew all about it. Cardiologists are coming on board, as high homocystein can lead to cardiovascular problems. As for the others, well, I think they don't know much about it. I should know more later today, after another medical call. Will post more then.

Thanks for all the info! A quick follow up on the SUNY test -- is it something other than the DNA test showing the MTHFR DNA? When I looked for it online, that's what it seemed like to me. We had that done via Labcorp, through insurance, so I thought the SUNY test might be something different. -- lfran

Please post or PM me with more info on the SUNY test. DS 10 is C677T homozygous, and I would like to learn all that I can. However, I want to add that since finding this out, I have been giving him methylfolate and methylguard plus, both from Thorne, and have seen two major symptoms DISAPPEAR. One is nighttime wetting and the other is his extremely high anxiety. The wetting is down to about 1 or 2% of what it had been (a couple of spots now and then) and it looks to me like his major fears are just...gone. Also just saw a research paper linking low B12 and low folate to nighttime wetting, so I am pretty excited that this suppplementation may have fixed this problem for good. I will post more later, but wanted to get this info out there. PLEASE don't let me be jinxing this by posting.

It can be extremely dangerous for those with the MTHFR mutation, and several of these kids are showing up with that mutation. Pediatric dentists like to use nitrous oxide for young kids, so you may have some resistance from your dentist. Our dentist uses it until the kids are around 9!

Just a thought, vis a vis the B vitamins. Several of us have gone ahead and tested for the MTHFR defect and come up positive. If this is positive, the "regular" b vitamins won't help -- you need the methylated form, which can be either by prescription or from places like iherb.com and other online vitamin suppliers (no prescription needed). Was pretty shocked when my DS10 turned up homozygous for the MTHFR mutation, but supplementing with these special B vitamins has made a world of difference in his anxiety and other problematic symptoms. (Hasn't helped the tics, though, sadly).

And a couple of docs, including the Europeans,think 58 is quite significant.

My DS10 is homozygous for the C677T methylation mutation and after starting him on NAC and especially methylguard plus (both over the counter), we have seen the fears and intrusive thoughts go waaaaaaaay down. I think methylation is the key for some of these kids. SOOOO thankful for this forum and the suggestions to test for the mutation -- a $50 test, covered by insurance. Since methylation has implications for other health issues, am doubly glad for the insight.

Just as a side note, the side effects for some antibiotics (especially amoxicillin) list hallucinations as a side-effect. They are rare, but they are reported. So....for some, high-dose antiobiotics may be contributing.

Foot pain in the morning is often a sign of Bartonella, which is a very common lyme co-infection. Often treated with rifampin- but make sure you monitor liver function frequently if on rifampin. Gruelling fatigue can be low thyroid, as well as many other things. If low thyroid, it's pretty easy to treat. I felt completely better within a week of starting thyroid treatment (like an epiphany, really), although my doc told me it shouldn't have happened quite that fast. You don't even have to be super hypothyroid for the fatigue to hit.I fell asleep in my dinner plate almost every night before it was treated. Hope you feel better soon! I actually work mostly from home, but I run my own business the last 6-7 years and it's more than full time. Make my own products, ship the items, manage a website, do the book keeping, ordering, customer service, etc. --- then I go to school full time 4 classes, and then I have the sicko kiddo and myself. It's a lot, but until this surgery I as able to manage it. I know I keep referencing the surgery, but it's really not the problem. It just seems that having it knocked the wind out me, I just haven't been strong enough to hack anything else since. I was in a lot of pain before the surgery and feel relieved that all of that stuff is gone (my ovary was attached to my intestines by adhesions, this was my 3rd surgery in 15 months for endometriosis, fibroids, ovarian cysts, etc.). After about a week I noticed I was getting tired, but now it's just gotten worse each day. No signs of infection or anything like that, and I'm on Augmentin for a sinus infection, so that should have taken care of it if there was any...just aches, pains and exhaustion. I have missed quite a few holidays with the family in the last year due to being sick and truth be told I was relieved. I also have become anti-social, not because I don't want to, it's just too much effort. Sometimes just getting dressed up and putting on make up seems like too much work. It's really not like me either, I'm a pretty happy person, I laugh all the time, I WANT to be social, but damn it if not just too tired. Oh, and I have this twitching that is getting REALLY bad. At first it started out to be quirkly and once every few days, then once a day or so, now it's all day long several times and hour. Twitching on my face, in my hand, my thigh, my back and even my side near my ribs. I have read that twitches and spasms, etc. are Lyme related, and they are not painful, but man they are annoying. Thanks, Colleen. It really did feel better just to get that out. I try not to complain to my hubby too much, I feel bad especially with the drama my son's illness causes in the house. He came home tonight with my favorite dinner. I hadn't even said a word about how I was feeling, didn't even mention dinner, he just brought it home. I guess he can tell I'm pretty worn down, it was a really nice surprise though. Needless to say, I'm trying to suck it up and not cry about not feeling good, so it felt good to have a little pity party for a few.

Untreated hypothyroidism (high TSH) can cause killer fatigue -- zombie state fatigue. It's pretty easy to treat -- daily levothyroxine (taken in the morning), with frequent testing until the right dosage is found. Proper treatment of my thyroid CHANGED MY LIFE. Whenever my TSH creeps up much over 2.0, I feel it. You just have to be careful that you don't overtreat and get pushed into *hyper* thyroid state. But that's also pretty easy to monitor -- only happened to me once in 5 years, and that was when I lost a lot of weight and hadn't had my dosage adjusted to compensate, Look into that, I was recently informed that with docs that specialize in thyroid disorders, they actually like the TSH around the 2 range so 5.5 seems high. Did that not get mentioned at your appt? It was yesterday right? Who did you see? The fatigue has been beating me down since my surgery (and aching like i have the flu)...and I have to wonder if the 3 weeks of steroids I was on a few weeks prior to surgery added fuel to the fire and I'm paying for it now...

My DS10 has the MTHFR C677T homozygous polymorphism and showed high titres for the first few years of our tracking him. They are normal now -- but he was treated with abx for over a year, so that may be why they lowered. But he did have the polymorphism and *did* show titre rise. (I am heterozygous and also show high levels (am asymptomatic for strep).

For a long time, we had to pay cash for azithromycin and it can be VERY expenive - it was $400 per month at CVS for either 250 mg once per day or 250 mg twice per day -- I forget which. However, at Costco, it was only about $120 per month, and the last time they filled it, they used Z-Packs and that brought the same prescription down to about $60 per month. I strongly suggest using costco (perhaps they will fill it from their internet site if there is no costco near you) and ask them to fill it using Z-Packs. This is for tablets -- don't know about suspension, but I taught one child to swallow pills at age 5 and the other at age 7, so it can be done, if necessary. We practiced with swallowing small candies, then moved on to M&Ms. You can also call around pharmacies and ask what their cash price -- no insurance -- is for a specific dosage. They can vary enormously in price. Good luck!

What's the best lab to use for kryptopyrrole testing? And is there a consensus about stopping b vitamin supplements before testing? I contacted Great Plains lab, and they say don't need to stop supplements. Thanks.

Anyone notice if methylguard plus from Thorne turns their urine a different color? We've noticed this -- wondering what it means, if anything.

DS10's vitamin D levels keep dropping and it was suggested to put him on supplements (which I've done before). He was at a pretty good place, tic-wise, and they shot up with the supplementation. I've seen this before, as well. Anyone else? Any thoughts as to why? I just ordered some D2, to try instead of the D3. Anyone have experience with that? Thanks!

Has anyone been given any recommended dosages for 5-MTHF supplementation for homozygous C677T mutation? Thanks!

Has anyone been given any recommended dosages for 5-MTHF supplementation for homozygous C677T mutation? Thanks!

Yale did a study that showed that supplementing with NAC (N-Acetylcholine -- available from health food stores) helped a lot of people with this. If you check NAC on amazon, you'll see people say it pretty much stopped their hair pulling. You should google NAC and yale and see their recommended dosages. -- Liane

It is a genetic test that you can run through quest. Apparently, it is also important to check B12 levels, as well as methylmalonic acid.

Yes, based upon the experience of others on the latitudes boards.