LNN

I was looking for that particular person - but glad to read your kids are doing so much better!

T Anna - you might like this blog about 17 Things The Princess Bride taught Me http://www.deseretnews.com/article/765622139/17-things-The-Princess-Bride-taught-me-about-autism-parenting.html?pg=all FWIW - IVIG is a tool, not a cure. It takes time to see improvement. But it also isn't the only tool. If you stall, there are still other options that can move you forward. So don't get discouraged if IVIG doesn't get you to where you need to be. It doesn't work miracles for everyone but everyone can still find paths to their own miracles.

It sounds like you already answered your own question about whether you need a new/literate LLMD (and you might want to contact ILADS to let them know about your experience). I agree with S&S - treatment needs to be based on symptoms, not just labs and that cuts both ways. LLMDs will often treat if you have significant symptoms but indeterminate labs but the responsible ones will also not treat if you don't have symptoms even if labs suggest otherwise. One school of thought feels you may never be able to fully eradicate lyme if you've had it for a long time but as long as you can reduce the infectious load to the point your immune system can keep it in check, a cold war detente is as good as being "cured" in terms of quality of life and is may be the best you can do. As for your kids - I wouldn't get hung up on whether it was congenital. Nymph ticks are so tiny, it's entirely possible they could've been bitten and never know it. At this point, it's about getting treatment if needed. It does look like your DH has lyme but again, does he have symptoms? Under the pinned threads at the top of the forum, you'll see a lyme pin that has a few links on interpreting the bands. Maybe that will help.

The lyme forum had gone pretty quiet and most of the members who posted there were from or still on the Pandas forum. Since the two share many issues and sometimes our kids have both, it might make sense to have the two forums reunited again. Personally, I found I was repeatiing myself when I frequented both forums and found I had to go to both forums to ask the same question. Kinda nice to have it back in one place. But I don't think the decision is set in stone and if there's a clear preference to have them split, I'm sure Sheila will be open to hearing pros and cons.

At the top of the forum is a pinned thread of helpful threads for Lyme. In there, I've posted three links on interpreting results. 31 is one of the two bands that are unique to lyme and considered "smoking guns" (I think the other is 34). Unlike 41, which shows only that your body made antibodies to an organism that has a flagella (lyme, h pylori, syphilis), band 31 only shows up when your body is fighting a Bb spirochete. No other organism is going to cause this band of antibodies. It's why band 31 was chosen for the lyme vaccine and why it was dropped from the CDC surveilance criteria, because if you got the (failed) lyme vaccine, you'd always show positive for band 31 As Hopeny said, band 31 usually only shows up once you've had lyme for a year - a sign of chronic lyme, so it makes sense it shows as an IgG +. That you also have a + IgM for 39 - another highly lyme specific antibody - indicates it's a current infection and not just past exposure. IMO, an ID who dismisses these specific bands is someone who denies that chronic lyme exists. Not someone I'd be turning to to get me well. I'm with your LLMD.

Yes! Thank you!

There are two moms I know of who blog about their Pandas experiences. One writes Panslife (http://www.panslife.com/) and I've touched base with her. But I can't recall the second. The mom's first name is Amy and her last name starts with a DeP** Does anyone know what the second blog is or how I can contact Amy? I think she was a Latitudes member at some point but not sure if she's still here.

Maybe in addition to faxing info, send it by certified mail/return receipt. That would give you a signature from the insurance co. and a date so maybe you could argue that the clock shouldn't get re-set every time they "lose" something.

There are lots of things that can contribute to insomnia - low Vitamin D levels, thyroid issues, the timing of when you give certain supplements, anxiety...I've not heard anyone say a virus per se caused insomnia (tho they can contribute to a PANS flare in general). Some here use melatonin (btw 0.5 mg and 2mg would probably be appropriate for a child). But realize that if you give it for any extended period of time, the body will begin to make less of its own. So if you then decide to stop, you can't stop cold turkey. You'd have to wean off of the melatonin to prompt the body into making more again. We use melatonin occassionally for nights when the body is tired but anxiety is keeping them awake. But when I use it myself, I never wake feeling really rested and my daughter seems to feel the same way. So we limit its use. But others have great success with it. Still, it might be worth testing D and thyroid levels first. Also, selenium and iodide deficiencies can cause thyroid issues and may contribute to insomnia. We did a urine test last week to check for selenium and iodide deficiencies to see if that could be behind my DDs insomnia (her thyroid TSH has been high all winter). Waiting for results.

It's not clear to me what your 31 and 39 results were. Can you please clarify if have + with these bands?

FWIW, Yasko does not use chelators in her protocol. She does metals testing at least once a month and says that when you re-start the methylation cycle, you start to see the body naturally chelate itself and the metals start dumping. She uses the monthly testing to gauge how fast to proceed (i.e. you don't want to ramp up methylation supp doses and get things moving faster than the body can handle) and it helps gauge the use of binders - I believe she uses charcoal "flushes" but not sure what that means. So maybe you can hold off on the dental work - or there's a yahoo support group that follows Andy Cutler's chelation protocol - they may be able to give some input (tho they were not very helpful for the brief time I was there - a bit hostile toward lyme and very hostile to Klinghardt). Have you been treating for 7 years or ill for seven but treating for less? My LLMD is 45 min north of Dr J but not sure if that's too far for you. Let me know if you want his name. Maybe watch her video - without trying to retain it all - and see if it prompts some ideas for you.

I started with yasko - you can watch a 2 hr video of her here: http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1- But it was hard to take it all in even without brain fog! You can also use her book Pathways to Recovery but it's much easier to understand once you have your real data in front of you. Otherwise, it's all hypothetical and you don't know what to pay attention to and what you can ignore. So bookmark the sites for future reference. In addition to Yasko, I found some helpful info at mthfr.net and some of Sterling Hill's blogs at www.mthfrsupport.com and lots of misc. blogs and sites. There are some youtube vidoes you can watch too. For awhile, it was anything I could get my hands on. It's a complicated subject. And I'm by no means an expert. I've learned only the basics of what I need to do for my immediate family. Regarding the test - insurance will not pay for it. But you don't need a doctor's orders to get it. You just go online and order a kit. Very simple. And as I said, they're giving discounts right now when you order more than one kit. When you register, I would suggest opting out of sharing your data. I think the whole thing is in its infancy and there are privacy concerns. But my need to know outweighed those concerns. So I just selected as many privacy options as I could. I'm not sure I understand why your dentist is requiring you to get tested before removing your amalgams. That doesn't make sense to me. Did s/he give you a reason? I had mine removed last year. I couldn't afford the travel and expense of an environmental DDS, so I took DMPS before and after the procedure in the hopes of sopping up metals that got into my bloodstream from the procedure. I have no idea if this helped, but I had some on hand and put it to use. The DDS also used a mouth dam and tok other precautions, tho I'm sure it would've made an environmental DDS cringe. But sometimes, you can only do so much. I've gotten a lot of support from our LLMD (I don't have lyme - only my son does/did). But the methylation stuff has mostly been on my own, with the LLMD as my sounding board. He knows a lot about a lot of things, but methylation - and its implications - are still fairly new territory for him. That may change in the coming year(s) but for now, a lot of successes and mistakes are on my own. It does sound like you might need a new LLMD. You shouldn't be arguing over treatment and I agree, you need to introduce one thing at at time. It doesn't do much good to kill the lyme if you also kill the patient in the process. One option is to take a holiday on all but the most essential pills. After getting my 23andMe results for my kids, I realized some of the supplements that were good for one kid were actually bad for the other. They both feel better now that we've stopped the ones that are generally good for most people (e.g. milk thistle and alpha lipoic acid) but can be bad for those who have trouble with sulfur (my DD). I never in a million years would've guessed it. It's supposed to be so good for you. But that wasn't the case. But you also don't want to stop treatment altogether. Sounds like a compromise is in order... Once you get your results, you could consider using one of the practitioners on the FB mthfrsupport site. I don't know what they charge or how they handle your private data, but they seem to know more than most practitioners on how to look at the bigger picture. One - Tim Jackson I think - had lyme. But I din't think any can prescribe abx and you'd still need to work with an LLMD you trust.

Totally understand your reluctance to bleed more cash on anything. When you're really sick and no one can figure out why, it becomes a huge money suck. But I have to say that the $99 for 23andMe was a really good investment (when I ordered 2 kits for DH and myself last week, they had also introduced a 20% discount on additional kits, so mine was $99 and DH's was 79). Given your response to the methylfolate/methylB12, you're probably right to think you have more than just MTHFR issues. Three things could be behind your horrible response. First, the starting dose could've been too high. You need to start low and slow. Think of rusty wheels that haven't moved in a long time - you need to gently re-start the methylation cycle, not jump start it with 12,000 volts. So its possible you started too high - or even that the dose was higher than you'd ever end up needing. The fact that you felt rage might mean you over-methylated yourself. When you've flooded the system with too many methyl donors, you can get rage. Niacin (50mg) is a good antidote for this if you ever try it again, since niacin uses up methyl groups. The second possibility is that you have additional methylation issues and treating only one and not the bigger picture can just move the problem downstream, possibly creating an even larger log jam. That's where 23andMe would certainly help. Once you get your raw data, you can run it thru a free app called Genetic Genie (tho the owner does ask for a $10 donation, which is very deserved IMO). Genetic Genie gives you a report that looks nearly identical to Yasko's report, except NOS and SUOX snps aren't reported. (but different NOS and SUOX snps are tested in 23andMe and you can back your way into the knowledge on these genes, just a little more work). You then compare your results to this 50+ pg guide http://www.heartfixer.com/AMRI-Nutrigenomics.htm that can help you figure out what to do with this info. (and by the time you get your results - which are currently taking about 8 weeks - others here will have their results and can probably help you with specific questions). The third possibility is that because you're not positive for C677T and only A1298C +/+, you have a metals problem brought on by lyme and you're feeling a block caused by low BH4. A quote from the link I just listed: MTHFR A1298C has no adverse affect on 5-methyl folate production, but it does compromise the “backward” reaction, whereby 5-methyl folate is converted back in to THF, in the process generating one molecule of BH4. Individuals with abnormalities in CBS and BHMT will be low in BH4, as it is being used up detoxifying ammonia that these defects have generated, so their combination with MTHFR A1298C leads to a BH4 deficiency double whammy. DHPR is the enzyme that regenerates BH4 from BH2. It is poisoned by mercury, lead, and especially aluminum. These toxins are wide spread in our environment, and individuals with Methyl Cycle abnormalities have particular trouble dealing with them. The result is a progressive drain on BH4, a progressive impairment in neurotransmitter production, and conversion of arginine not in to nitric oxide but instead in to free radicals such as superoxide and peroxynitrite. We treat MTHFR A1298C with 5-methyl folate supplementation (aiming to push the reaction backwards) and, after your other Methyl Cycle challenges have been addressed, with nutritional doses of BH4. Metal detoxification will help here and with every other biochemical function in your body, and will be part of your overall program. We will also endeavor to decrease your need for BH4. If you are COMT (-/-), we can provide nutritional support to help maintain dopamine levels, such that you will need to use less BH4 to generate more. If you are MAO A (-/-), we can do the same thing with serotonin precursors such as high tryptophan foodstuffs. The basic philosophy is to stimulate the action of still open pathways to take the stress off your impaired pathways. But as you can tell from the above quote, you really need to know what your other gene issues are before you can make a good treatment plan. Just looking at MTHFR alone is the tip of the iceberg. And if one of your issues is with the gene CBS, then Yasko suggests treating this first, then the rest. When you treat the rest, she suggests you add small amounts of supplements to help the entire cycle, a little at a time, and not getting one blockage moving at full speed while the other blockages stay stuck. Now, all this said, you may very well still have lyme issues to fight even when you've "done all the right things" for methylation. You will probably need to continue abx and possibly treat for metals or biofilms while you also address methylation. But clearing the log jams should make healing from the infection much, much easier - assuming no chronic environmental issues like mold, etc. Of all the treatments we've done, the two best checks I ever wrote were for our initial consult with our LLMD and the one to 23andMe. (and that's not even mentioning the things I learned about inherited health risks the kids face down the road that we can now work on reducing).

Ah fixit, always impatient, even tho we've both been at this so many years Yasko advises to wait until you get your results because CBS, if you have it, should be treated first before you do anything else. Then you identify each of the other areas that needs help and you help each one a little bit. So you dont want to get one circle spinning at full speed while the others are still stuck. You want to unstick each one a little bit, then a little bit more, in concert with each other. So you re-start and detox in "equal" parts. If you can stand it, wait until you get your results. It makes a lot more sense once you know for certain what genes are signalling correctly and which ones need support.

Vitamin D has been implicated in sleep problems, but it's usually Vitamin D that's too low. This neurologist has a 15 min video http://www.youtube.com/watch?v=h7cbBB1c0IM that discusses her findings - lots of her sleep apnea patients had Vit D deficiency at the root of their problems. But she goes on to say that if you get levels too high, you can get the same insomnia problems you were trying to fix by supplementing. That said, it's unlikely if you just started supplementing (and 1000 IUs isn't that high), she isn't too high. But like the others, we give D in the morning. You might try giving early in the day or stopping for a week and seeing if the insomnia resolves.

I originally (incorrectly) wrote that COMT was involved with tryptophan and MAO-A handled dopamine. It's the opposite and I went back to my original post and corrected so if someone only read that and not the rest of the thread, they'd get correct info. So yes, if you are COMT -/- (meaning normal), you break down dopamine at an appropriate rate. The COMT gene is called the worrier/warrior gene. If you are hetero or homozygous COMT, you break down dopamine more slowly, leaving certain decision-making portions of your brain flooded with dopamine for longer periods of time. This produces a sense of worry. If you are COMT -/- (normal), you don't get overwhelmed with dopamine and you make better decisions in an emergency situation, like a warrior who can make sound decisions in the chaos of battle. My daughter is COMT +/+ and one of her reports predicted that she wouldn't handle stress well. That's an understatement. If it's 10 minutes before the bus arrives and she's nowhere near ready, if I start hounding her to rush, she instead freezes - deer in the headlights - and panics to the point she can't do anything except cry. It's like when you flood the carburetor - too much gas prevents you from turning over the engine. You have to wait for the gas to dissipate. She's like that too. If she panics, she has to wait a few minutes for her fear mode to subside and then she can start to get ready again. Her brain gets flooded and she can't degrade the dopamine quickly enough. So I've learned the hard way that when she's running late, I actually need to back off or we pay the price. As for Vitamin D - it depends on your particular VDR and COMT combination. It's understanding how the combinations of gene alleles work together or against each other that's so confusing. Your best bet is to refer to the heartfixer write-up once you know your specific genetic make-up. Avoid speculating on what your kids mutations might be and supplementing based on your hunch. I did this and was wrong on a few judgment calls. I ended up supplementing both kids with tryptophan and tyrosine assuming they had shortages (based on anxiety and depression). Turns out this was fine for DD but wrong for DS. I spent months blaming adverse symptoms on a lyme or Pandas flare when at least in large part, it was likely due to my flooding the carburetor. After many years of treatment for infections, I'm now thinking our residual issues are due to methylation and not infection. I know it stinks to have to wait so long for 23andMe results, but the more I use the data, the more I'm grateful for the custom info it's given me.

Welcome to the forum. Dr L will do a very good job exploring Pandas with you. I have a lot of respect for her. As others have suggested, sometimes when you have Pandas and don't get remission the way you "should" it's also a good idea to test for chronic infections that are keeping the pot stirred up (lyme, mycoplasma, active viruses). The genetics you see discussed on this board is part of a process called methylation. You can think of methylation as a kind of metabolism, where a group of about 3 dozen genes work in concert, "cooking" the raw ingredients you take in from food and supplements and convert them into forms your body needs to operate correctly. They do this by trading something called methyl groups, which is simply a carbon atom bound to three hydrogen atoms. By trading methyl groups, it's like passing a baton in a relay race. When you have a genetic "mutation" on one or more of these genes, the body doesn't perform properly and since some of the products "cooked" in this process are neurotransmitters like dopamine, serotonin and norepinephrin. Partially over or undercooked neurotransmitters can lead to mental health issues and autistic behaviors. It's one reason why, in addition to allergies, restrictions in the kinds of foods you eat can improve your health, because those eliminated foods might be high in something your body can't process well because it has too many or too few methyl groups and/or sulfur groups. Here's an article on how one (out of 3 dozen) genetic problems can cause bipolar behaviors: http://www.easytolovebut.com/?p=2782 Based on your description, it's possible that methylation issues are at least a part of her struggles. You might also find that viruses and heavy metals are also at play. I think starting with Dr L is a good first step. She'll help you explore the role of infection and if this is a part of your picture, it will help you feel a little less adrift. For some kids, simply eliminating the infection helps them gain remission. If not, then parents move on to explore lyme, metals, diet and methylation, among other issues. If this becomes true for you, then you may need to add an additional doctor (or several). An LLMD (lyme literate MD) can help explore many of these issues as can a DAN (Defeat Autism Now) doctor. But not all LLMDs and DANs are created equal and depending on where you live, members here can suggest options. It's one step at a time. But know that what you're doing is putting you on a path to getting to the root of problems and helping your daughter. So good for you!! It may take time, but with your approach, I believe you will get to the root of the problem and get your daughter back.

Here's the reference to the dangers of Miralax http://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html One thing you can use pysillium husk as an alternative http://en.wikipedia.org/wiki/Psyllium_seed_husks. We use this http://www.amazon.com/Foods-Psyllium-Husk-500mg-Capsules/dp/B0013OW2KS/ref=sr_1_2?s=hpc&ie=UTF8&qid=1363988144&sr=1-2&keywords=now+foods+psyllium+huskhttp:// in capsules. It draws water into the bowels and acts as a stool softener and as a fiber to keep the sides of the colon clean. Most days, my kids take one pill but if they haven't been regular, they'll take 2-3. But it works best when you also drink a fair amount of liquid.

PM me if you want info on Dr M. As for the fatigue/depression, my DD has been fighting these symptoms for a long time and we couldn't figure out why (no lyme, no infection, no mold, no virus...) Just got some methylation testing back and DD has several issues that are sapping her energy and contributing to mood issues. One of these genes makes her intolerant of sulfur drugs (like bactrim and cipro). The first supplement we added was CoQ10 and it has helped a lot. The next we'll add is Yucca to lower ammonia levels. Going to have a long talk about all of it with Dr M in 2 weeks. After 2 yrs of treatment, it's possible that it's not Bart - or not just Bart - that you're dealing with. For $99, I can't say enough good things about what you learn from doing a 23andMe spit test. Takes 7-8 weeks for results, which totally bites. But you can then download your 23andMe data, run it thru a free app called Genetic Genie and get a report on your methylation issues. You can then refer to this site http://www.heartfixer.com/AMRI-Nutrigenomics.htm and get som e decent recommendations on what to do about your specific issues (scroll down to the discussion on CBS mutations for info on the energy/sulfur/ammonia issues and treatment).

These are not genetic tests. They are tests that look at how active the immune system is. Most commercial labs have a test for them, tho the phelbotomist probably doesn't run them often and therefore has "never heard of them." Here's Quest Diagnostics tests: C3d/C1q Immune Panel this is a list I got when I thyped "raji cell" into the search bar on the test menu - I see no direct mention of raji cell but didn't read every single test http://www.questdiagnostics.com/testcenter/testMenuSearch.action?keyword=raji+cell+complex&totalResultCount=0&currentResultsetStart=0&results=&submitValue=Search My point is that these are not specialty tests. Just not ordered often, so the technician is unfamiliar. You can probably do a similar search on Labcorp's site or your local lab and get the test numbers. You usually have to go to the physician section of the lab's site to find the test menu.

When I was looking for our sweet spot on methylfolate dosing, my DD developed Low homocysteine with C677T because I was giving her way too much methylfolate (and not enough methylB12 either). One note on what you ordered - MSM, Glutathione, NAC and Taurine are all sulfurs, which would be bad if your DD has a CBS mutation. Taurine helps balance glutamate and Gaba but should be avoided for those with CBS. I always figured my DD was negative for CBS because she tolerates Bactrim - a sulfur abx. Turns out she is heterozygous (+/-) for two CBS snps. So just be aware. If you see sudden mood swings, stop the supplement and read up on using CoQ10, carnitine and Yucca to counteract the negative response.

Thanks for the links!

So some smart researchers at Mass General (home of Jenike and Geller) have discovered that a gene variant can help some people with schizophrenia improve by supplementing with....folate and B12. (dare I let myself think conventional science is catching on?) Genotype plays role in schizophrenia response to folate By: BIANCA NOGRADY, Clinical Psychiatry News Digital Network Folate and vitamin B12 supplements may improve the negative symptoms of schizophrenia but only in patients with a genetic variant that influences folate metabolism, a study has shown. "Although four such variants have previously been associated with negative symptom severity, the genotype that contributed most strongly to treatment response was FOLH1 484T>C," wrote Dr. Joshua L. Roffman, of the psychiatry department at Massachusetts General Hospital, Boston, and his colleagues. © thinkstockphotos.com Patients treated with folate plus vitamin B12 showed significant improvement on the Scale for the Assessment of Negative Symptoms (SANS), compared with placebo (group difference, –0.33 change in score per week; 95% confidence interval, –0.62 to –0.05), when genotype was taken into account. Among patients homozygous for the 484T allele – a genetic variant in the folate hydrolase 1 (FOLH1) gene – the benefits of folate and vitamin B12 supplements were even greater (–0.59 change in SANS score per week; 95% CI, –0.99 to –0.18), according to results published in JAMA Psychiatry (formerly Archives of General Psychiatry) (2013 March 6 [doi: 10.1001/jamapsychiatry.2013.900]). The double-blind, placebo-controlled study randomized 140 outpatients with schizophrenia, who had persistent symptoms despite treatment with antipsychotics, to 2 mg of folic acid and 400 mcg of vitamin B12 daily for 16 weeks or placebo. The patients were 18-68 years old, had been treated with an antipsychotic for at least 6 months, and were at a stable dose for at least 6 weeks. They also had to have scored at least 60 on the Positive and Negative Syndrome Scale. The study found that only the high-functioning variant of FOLH1 (484T) was associated with a benefit from supplementation, while the effects of supplementation did not reach significance for either the low-functioning variant of FOLH1 (484C) or the MTHFR, MTR, or COMT genotypes. While the treatment effects were modest, the researchers noted that even small effects could be clinically meaningful given the disability associated with negative symptoms, the paucity of available treatments for these symptoms, and the minimal side effects of vitamin supplements. Folate deficiency is known to be a risk factor for schizophrenia, and all four genetic variants included in the study have been associated with increased severity of negative symptoms such as apathy, social withdrawal, and loss of emotional expressiveness. "Thus, the finding that only patients homozygous for the T allele exhibited improvement in negative symptoms after 16 weeks of folate supplementation could reflect diminished folate absorption, and briefer exposure to higher folate levels, among C allele carriers," the researchers wrote. The authors suggested that the findings could have implications for other health conditions associated with reduced folate and elevated homocysteine concentrations, such as stroke, cardiovascular disease, and dementia. "The current results suggest that individual differences in folate metabolism related to the presence of common functional genetic variants may have a bearing on treatment outcomes in these other disorders, as well as negative symptoms of schizophrenia," Dr. Roffman and his colleagues noted. The research was funded by the National Institute of Mental Health and an award from the Howard Hughes Medical Institute, with support from Harvard Catalyst. The investigators disclosed receiving support and grants from a number of pharmaceutical companies and research organizations.

Here are some additional article that may be helpful: http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf http://www.biobalance.org.au/_downloads/acnemjournalnov10.pdf Treating my son (and myself) for this made a big difference in how we felt.

Oh LLM -- you know i can't let things go without jumping on them -- it was first a cup of coffee that moved into a dinner -- now i'm going to owe you a beach vacation! have you used enhansa? did you see JAG's recent post on it? i'm thinking that may be something to try in the summer. I only tried enhansa for a brief time. Our LLMD gave me samples but I tried it last summer when I was ODing DD on methylfolate and so I never saw any benefit. I tried it for DS a few times but motrin seems to work better for him. Jill promises me I'd love it. I believe her. But like her DH, mine is on a crusade to reduce the pills I make the kids take, so Enhansa is a back burner thing for me. I have 17 pills left in my sample bag - let me know if you want them. (Or I can bring them with me when we meet at the beach! )