LNN
Premium-
Posts
3,384 -
Joined
-
Last visited
-
Days Won
84
Content Type
Profiles
Forums
Blogs
Store
Events
Everything posted by LNN
-
My vote would be to not rock the boat for a few weeks and just savor it. Then, if things change or if you want to tweak once school is out, follow your gut on what to change first. But only change one thing at a time. Sounds like you have a better compass than the psychiatrist. So happy for you!!
-
I'd suggest Dr J or Dr M in CT. We see Dr M. You can PM me if you have any questions. KaraM's kids saw Dr J but she saw an LLMD in the Boston area for herself, as Dr J only sees kids. She isn't on the forum much anymore but you can PM her if you want to look into that Dr as an option.
-
Hyper? Manic? which pill is doing this?
LNN replied to T_Anna's topic in PANS / PANDAS (Lyme included)
QM - you've been at this longer than I have but I'm surprised by your recommendation on hydroxy vs. methyl B12. If T. Anna's son has MTHFR issues, I've always read that methylB12 was the suggested form, as this mutation interferes with the body's ability to convert other forms into the methylated form. Can you help me here? As for the folinic acid vs. methylfolate, I agree with you from personal experience but I've also read that folinic acid has it's place in certain body functions and that both folinic acid and methylfolate are needed. Not knowing T Anna's son's medical history, it may be appropriate for him to take folinic acid rather than methylfolate, no? On the CoQ10/ubiquinol, my DD takes 100mg for fatigue/CBS issues and while she does have trouble falling asleep, she had this problem long before starting CoQ10 and when I stopped the C0Q10, the trouble falling asleep didn't go away. She just dragged through the entire day and then still couldn't fall asleep. So that wasn't the thing that struck me as far as a culprit for the rapid mood cycling. Gaba was not good for my son at all, tho I can find no good reason. It made him very moody. But again, 23andMe would put a lot of this speculation to rest. T. Anna - my point in replying wasn't to pick a fight with QM, a kindered spirit and fellow Tarheel. It was to show that without concrete testing, doctors as well as moms who google too much will give you conflicting advice or see a set of symptoms differently. Best to spit and see what comes of it. In the meantime, if you decide to start or stop things, change only one thing at a time and give that change time to work/register before changing something else. Otherwise, it gets very complicated and you end up wasting time, no wiser than before any experimenting. -
Hyper? Manic? which pill is doing this?
LNN replied to T_Anna's topic in PANS / PANDAS (Lyme included)
The genetic testing I'm referring to is 23andMe - a spit test, not a blood test. You order the kit directly from their web site, no doctor involved. I know Dr T is also ordering a separate genetic mitochondrial test thru Courtagen, but that's not what the test I was talking about. You can order 23andMe any time. Unfortunately, it takes about 7 weeks to get results, but the info can be very helpful. While I have no medical training, from what I've read, I don't think the B12 would be the issue. When you supplement with methylfolate, you also need to supplement with methylB12 - the two work as co-factors and both are needed together. If he's only taking one tablet, I'm going to guess it's a 1000mcg (aka 1mg) tablet that dissolves under his tongue. If you end up staying at a high dose of folinic acid, then you may actually end up needing more, not less, methylB12. There's conflicting info about how well methylB12 is absorbed or ends up being bio-available. Most writings seem to agree that 1000mcg is on the low end of what you'd need, since much is lost before becoming bioavailable. Now, if he didn't have an MTHFR issue at all, then maybe methylB12 could cause problems. My son does not have any MTHFR issues (my daughter does). My son tends to have too many methyl groups floating around, so adding methylB12 would make him edgy. He actually does better on adeno or hydroxyB12, because the body must use up a methyl group to convert the hydroxyB12 into methylB12, which serves like a little sponge for him and soaks up an extra methyl group. Since starting him on hydroxyB12, he's less aggressive/irritable. That's why I've found the testing to be helpful. It gives you a bigger picture than just testing for MTHFR alone. -
Hyper? Manic? which pill is doing this?
LNN replied to T_Anna's topic in PANS / PANDAS (Lyme included)
Two items catch my attention - folinic acid and Luvox When I was trying to find the right dosage of methylfolate for my DD8 (who is MTHFR C677T +/-), I saw rapid bi-polar mood cycling when she was untreated but also when her dose was too high. Your son is on 5mg. Many adults only need to take 800mcg. So it may be more than he needs. You might try reducing the dose, or skipping a day or two. It takes 2-3 days for my daughter's mood to stabilize when I've gone too far in one direction. If your son gets less manic, it'll be a clue that you may need a lower dose. If nothing changes after a few (2-7) days, then I'd move on to look at the Luvox. He may very well need folinic acid, but at a much lower dose. Both the folinic acid and the Luvox are working on his neurotransmitters. But Luvox dose changes need to be done much more slowly, so I wouldn't do that without working with your doctor. It's possible that as the folinic acid (at the right dose) does its job, you'll need less of an SSRI. But the easiest thing to adjust quickly is the folinic acid, so I'd start there and then use that as a guide to what to look at after that. You may end up lowering both. If you haven't done 23andMe testing, you may find it very helpful. Many of of have found that MTHFR is only one of many hurdles and treating the whole picture yields even better results. -
What is the benefit of genetic testing?
LNN replied to JoyBop's topic in PANS / PANDAS (Lyme included)
I've had the exact same experience as DeeDee. I too was giving some things I thought were helping but were actually working against us. I wish I could go back to all my old posts and edit them about how great tryptophan is for anxiety. Based on our genetic tests, it was very helpful for my DD but not for my DS. If I could get my money back for the dozen bottles of supplements that now sit in my shoebox of shame, that alone would've easily paid for the 23andMe tests for the whole family. -
First, you may want to contact the NIMH to see if you're eligible for IVIG thru their study. That would be free. If not, and you are faced with paying a crushing amount for IVIG, I want to let you know that IVIG is not the only path toward remission nor is it any sort of cure. I am not at all bashing the treatment. It has helped a lot of kids. But there are also kids who aren't helped by it or aren't helped permanently by it. I say this only because when I was facing the decision of whether to pursue IVIG, I felt like I "had" to try it or I wouldn't be giving my child every chance he deserved. I was plagued by guilt and vowed to pay for it however we needed to. We did end up doing one HD IVIG (my son was 7 at the time). Because my son had undiagnosed lyme at the time, it resulted in a horrible herx response and put the whole family thru a whole lot of he**. It ended up doing nothing to improve his health or mental state and did not make him less reactive to subsequent bacterial infections. The only good that came of it was that it helped us discover the lyme. This would hopefully not be the case for your son. But I chime in because we've been able to get my son healthy with long term antibiotics, treating an underlying zinc/B6 deficiency and supporting his health with specific supplements that address genetic issues. Tho my son is still susceptible to flares if he gets an infection, he is back to baseline for most of the time. I know many other families who've also been able to regain health for the long term without IVIG. Again. not bashing the procedure. But for those who can't get it covered and can't go broke paying out of pocket, you don't have to feel like you're denying your child his only chance to get well. You can get there without IVIG. Dr K has helped many. He has helped the whole community with his willingness to treat our kids. But he tends to not look at other treatment options and/or other infectious triggers. While you may want to look at other, less expensive IVIG options, such as home infusion, just know it isn't your only path should that not pan out. Know that you can get your child well even if IVIG isn't an option for you.
-
Wendy, who is Dr K in CT? Can you Pm me? Not an initial I'm familiar with.... T Mom, I wouldn't think you'd want to do Pex with a chronic infection. Wouldn't that be removing antibodies that you've made to fight the chronic infection? I'd think you'd want as many antibodies as you could get (and in that sense, I can see the argument for doing IVIG for lyme - but maybe not HD as you don't want to 1. suppress the body's own immune system and 2. the herx could be harsh (and this might have been why HD IVIG was so horrendous for my son).
-
Lyme is one reason they've come up with the name PANS - a Pandas response to more than strep. Lyme is a bacteria. It can provoke similar symptoms, including OCD and tics. So you might spend a few days mulling the label over in your head, but in the end, it's a label. Doesn't matter which came first, it only matters that you fight the chronic infection. Yes, you can win the lyme battle. Yes, several of us have taken our kids off abx and sustained remission (knock wood). It is a loooonnnngggg journey and you may encounter hurdles - like co-infections, environmental issues that get in the way of healing (mold, metals, diet) and genetic issues (methylation, pyroluria). But there is a finish line and you will get there. I was very much in favor of combining the forums - not to beat everyone up and insist they had lyme. But the things you can do to support the lyme journey is also helpful for "strep only" kids and the sharing of info/strategies has been incredibly helpful to me. They overlap quite a bit. So if you search the archives, you'll find lots of good info along the way. On my way out and don't want to bore you with our specifics. We did lots of abx, supplements, testing, found pyroluria, found methylation issues - worked with an LLMD who's been a great collaborator - and we're in a very good place. You will get your kids there too.
-
Thanks! Also just read that butyrate is a high sulfur, so now I'm confused because CBS folks are supposed to avoid sulfurs. So I'm also looking into l-carnitine. Can anyone share info on that?
-
My DD had a constant dry cough from allergies. We invested in mattress, boxspring and pillow encasements (for dust mite allergy) http://www.missionallergy.com/and we now put her stuffed animals in the dryer for 15 min every other week and make sure we wash sheets/put blankets in the dryer weekly. Her cough has been gone every since.
-
Technique we discovered for helping to face/work through fears
LNN replied to peglem's topic in PANS / PANDAS (Lyme included)
Great idea! Hope it continues to help - you might want to share this idea with IOCDF and other groups. Love when the technology we usually can't get our kids away from ends up helping them. -
In reviewing my own 23andMe results this week, I found I have a CBS +/- mutation, making me at high risk for ammonia issues, heart disease, and depletion of BH4, which is essential to neurotransmitter synthesis. Yasko recommends Yucca to absorb ammonia but a FB user posted that Yucca is an estrogen enhancer, which is the last thing I need as I approach the big M. Someone else suggested Butyrate as an effective ammonia binder. I found the following info: From Wiki Butyrates are important as food for cells lining the mammalian colon (colonocytes). Without butyrates for energy, colon cells undergo autophagy (self digestion) and die.[1] Short-chain fatty acids, which include butyrate, are produced by beneficial colonic bacteria (probiotics) that feed on, or ferment prebiotics, which are plant products that contain adequate amounts of dietary fiber. These short-chain fatty acids benefit the colonocyte by increasing energy production,and cell proliferation and may protect against colon cancer.[2] Butyrate is a major metabolite in colonic lumen arising from bacterial fermentation of dietary fiber and has been shown to be a critical mediator of the colonic inflammatory response. Butyrate possesses both preventive and therapeutic potential to counteract inflammation-mediated ulcerative colitis (UC) and colorectal cancer. One mechanism underlying butyrate function in suppression of colonic inflammation is inhibition of the IFN-γ/STAT1 signaling pathways at least partially through acting as a histone deacetylase (HDAC) inhibitor. While transient IFN-γ signaling is generally associated with normal host immune response, chronic IFN-γ signaling is often associated with chronic inflammation. It has been shown that Butyrate inhibits activity of HDAC1 that is bound to the Fas gene promoter in T cells, resulting in hyperacetylation of the Fas promoter and up-regulation of Fas receptor on the T cell surface.[3]It is thus suggested that Butyrate enhances apoptosis of T cells in the colonic tissue and thereby eliminates the source of inflammation (IFN-γ production).[4] From here: http://wholehealthsource.blogspot.com/2009/12/butyric-acid-ancient-controller-of.html Butyrate increased energy expenditure by increasing body heat production and modestly increasing physical activity. It also massively increased the function of their mitochondria, the tiny power plants of the cell.... it turns out, butyrate has been around in the mammalian gut for so long that the lining of our large intestine has evolved to use it as its primary source of energy. It does more than just feed the bowel, however. It also has potent anti-inflammatory and anti-cancer effects. So much so, that investigators are using oral butyrate supplements and butyrate enemas to treat inflammatory bowel diseases such as Crohn's and ulcerative colitis. Investigators are also suggesting that inflammatory bowel disorders may be caused or exacerbated by a deficiency of butyrate in the first place. Butyrate, and other short-chain fatty acids produced by gut bacteria**, has a remarkable effect on intestinal permeability. In tissue culture and live rats, short-chain fatty acids cause a large and rapid decrease in intestinal permeability. Butyrate, or dietary fiber, prevents the loss of intestinal premeability in rat models of ulcerative colitis. This shows that short-chain fatty acids, including butyrate, play an important role in the maintenance of gut barrier integrity. Impaired gut barrier integrity is associated with many diseases, including fatty liver, heart failure and autoimmune diseases. Butyrate's role doesn't end in the gut. It's absorbed into the circulation, and may exert effects on the rest of the body as well. In human blood immune cells, butyrate is potently anti-inflammatory***. And here: http://lauraslymerecovery.wordpress.com/2012/11/12/lyme-disease-nutrient-spotlight-butyrate/ More recent research suggests that Butyrate quells the storm of cytokines that causes inflammation in the brain leading to scarring and cell death. By doing so, it is thought that chronic degenerative diseases like Alzheimers, ALS, and others may be slowed or even reversed. In fact, preliminary evidence suggests this is so when this nutrient is given in conjunction with others. Butyrate also helps clean the liver, the gall bladder, and biliary tree in the liver. It also helps clean the bowel, helps control ammonia, and removes unwanted “renegade fats”… and finally: http://www.ei-resource.org/articles/general-environmental-health-articles/the-detoxx-system:-detoxification-of-biotoxins-in-chronic-neurotoxic-syndromes/ (this is a good article for those struggling with detox and/or mold but a little technical) The oral use of butyrate, a short 4-carbon chain fatty acid, is of striking benefit (Fusunyan et al 1998, Segain et al 1983, Yin et al 2001) in mobilizing renegade fats, lowering TNFalpha, sequestering ammonia, and clearing biotoxins. So it's beyond me why it took 4+ years for this to come across my radar. But it seems promising. Anyone have any experience to share?
-
23 and Me and my DS--Mind exploding messily
LNN replied to lynn's topic in PANS / PANDAS (Lyme included)
PTCgirl - I am CBS +/- so I ca't join in any wine tasting. High sulfur But that's ok, I'll sip my umbrella drink instead. The good news for you is there's no CBS and no VDR Taq - makes life a little simpler, tho I'm sure you don't feel that way. A quick summary of your results says you have trouble with neurotransmitters! Shocking, I know. The best way to start (for me) was to cut and paste this entire document http://www.heartfixer.com/AMRI-Nutrigenomics.htm into Word. Then delete the gene sections that don't apply to you (and the recipe fluff at the end). Then go back and really read what's left, highlight or bold things you think are important. In some cases, it can feel conflicting, especially for those of us with VDR Taq/COMT combos. But you don't have that. The other stumbling block will be when you have some genes that talk about needing methyl donors and others suggesting you need methyl users. So trying to figure out that balance requires some gut guesses based on knowing your child's personality and then being prepared to screw up along the way. Mayzoo here's the Yasko links: http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf and a helpful 1.5 hr video http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1- The best "quickie" intro to methylation is the first few pages of the heartfixer link I pasted above in this post. But it gets very complicated and will require some studying. I've read Yasko's book twice and will now re-read it for a third time with my results in hand. But IMO, it's worth the investment. -
23 and Me and my DS--Mind exploding messily
LNN replied to lynn's topic in PANS / PANDAS (Lyme included)
My vote is for a pina colada with a little umbrella on a Caribbean island..even if some gene says pineapple is bad for me..... There are a few practitioners on the FB MTHFR Support page or you can go to www.mthfrsupport.com to their find a practitioner section. The main contributors to the facebook page are not MDs - one is a chiropractor, one a nutritionist, one a PhD in physical therapy. They seem to be well versed in methylation issues but my impression (I have not spoken with any of them) is that they deal more with adults and adult chronic health problems (arthritis, CFS, thryoid, cancer, etc). I don't see mental health issues addressed as often and while I know Pandas is mentioned, it's mentioned by the parents who post and not necessarily the practitioners. So I think they might be able to offer a perspective and guide you regarding supplements, I don't know how well they'd be able to incorporate that into the saw-tooth pattern of Pans flares where sometimes you need more or less of something. Their value I think depends on your comfort zone. If you're the kind of person who really wants the reassurance that a trained professional can give, then it's probably worth a phone consult at least. I know a few people here have done consults and maybe they'll post about their experiences. I did not do a consult in part because I'm pretty happy with what I've been able to do on my own thus far. But if I get stuck, that view may change. -
What is the benefit of genetic testing?
LNN replied to JoyBop's topic in PANS / PANDAS (Lyme included)
The link SFMom posted was informative and balanced but what it doesn't do is tell you whether you're the kind of person who will benefit from this information. For me, it's been incredibly helpful. But it is very complicated and has taken me a year of wading through videos and blogs and books and research papers to feel I have a reasonable (but still incomplete) handle on things. For those dealing with digestive issues, neurotransmitter issues, fatigue, metals, chronic infection - I think understanding Amy Yasko's methylation hypothesis can really help support the body and tip the scales in favor of healing. But it isn't a silver bullet. It won't "cure" Pandas or Pans. What it has done is allowed me to evaluate supplements and diet and detox strategies and work with, not against, my kids genetic issues. Not everyone wants to know all the information provided by a company like 23andMe. There are privacy issues you need to understand and be educated about. But if you're ok with these things, and you're willing to do your own research, with or without a doctor's guidance, then it may be a good tool for you. Just FYI - the 23andMe test costs $99 for the first family member, 20% discount on additional kits if you order them at the same time. It is not thousands of dollars. The lab that does the 23andMe tests is CLIA certified and I believe it's affiliated with or is Labcorp. This test gives you 990,000 snps ("snips") of data - sometimes multiple snps for one gene. It is not the same test that Dr T orders from Courtagen, which is strictly looking at mitochondrial DNA. (23andMe includes mitochondrial DNA but I don't know if it tests for the same snps that Courtagen looks at). Using results from 23andMe, my daughter - who suffered from severe mood swings - is rock steady thanks to some changes in supplements/vitamins and changes in diet (much less protein). My son, who's battled lyme and Pandas for 4 yrs, is now a very good place as well. I just got my results yesterday and will also be making some changes. DH's data is being analyzed now. Took about 7 weeks for results. Is it worth doing? It's a personal decision and depends on how much work you're able to put into understanding/acting on the results and what sort of medical support you have. For me, it's by far the best investment I've made out of the $50K we've spent on medical in the past few years. Ophelia - I was actually going to suggest you look into 23andMe and a facebook support group called MTHFR Support as well as the writings of Rich Van Konynenburg http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/on CF/ME and Amy Yasko- with your symptoms, you may find some real insights that could help. -
Hope - most things I've read about NAC suggest it's good for the liver. So what I'm reporting is only circumstantial and is often the case, I'm reporting a reaction that's atypical (I swear most of my life reminds me of the sesame Street song "which one of these things is not like the other, which one of these doesn't belong" and I'm always that "thing"). I was on two supplements - Milk thistle and NAC - when I went to my PCP in March for my annual physical. I'd been taking milk thistle for about 2 yrs - initially made me feel great then eventually became my new "normal" and I didn't notice much difference. But took it along with my DS while he was on so many abx. Last year, my liver enzymes were normal, so I don't think the milk thistle was causing problems. But this past January (2 months before my physical) I started taking NAC as a mucus thinner for a chronic cough I develop every winter. Usually, I get a cold and a bad cough and then the cold goes away but the cough stays with me for the rest of the winter. Since I had NAC on hand (from trying it for DD who flipped out on it), I took it and it broke up my cough and made it go away. How totally awesome! But then over time, I started to gain a little weight and became depressed/lethargic. I blamed it on winter depression and getting closer to menopause. Then I had my physical and both my ALT and AST liver enzymes came back in the high 70s-80s (normal is below 50). So I stopped both milk thistle and NAC, since each can effect liver (tho both supposedly in a good way). I waited 6 weeks and re-checked liver panel. AST and ALT back in the 20s. The dr said it could've been that I was fighting a virus the first time we tested and it could have nothing to do with the supplements. But when I stopped them, my depression/lethargy lifted and my love handles have disappeared - no change in diet or exercise (alas). Because I'd been on MT for 2 yrs, I tend to suspect NAC. I should have my 23andMe results in about a week and I'm starting to suspect I'm CBS+. If so, then both NAC and MT would be bad for me, as both are sulfurs. So it could be that I was able to tolerate MT but then when I added the NAC, it tipped the scales and became more than my body could handle, causing a spike in ammoina and an overload on the liver. The depression could have been a sign of toxicity buildup and blood that wasn't being filtered well enough. Speculation on my part. But I know my DD can't tolerate NAC and although I felt no mood swings or increase in anxiety, I did experience a drastic change in depression symptoms. I now feel like myself again. Could've been some mystery virus, but I'll be steering clear of NAC even if I don't end up having a CBS mutation.
-
I haven't felt this good in a long time!
LNN replied to peglem's topic in PANS / PANDAS (Lyme included)
:) :) -
I think you should treat yourself to a trip to a doctor - either your regular PCP or a naturopath. But you've mentioned three symptoms in 2 sentences and yes, it could all be from your situation, but it could also be something more. You can't be a good caretaker if you yourself are sick. Many moms here have ignored their own health and then found chronic conditions. I had a liver problem developing (from NAC) and never suspected it. Blamed depression and weight gain on menopause. A coincidental annual visit to my PCP revealed the liver problem, which prompted me to stop NAC and now my liver enzymes have returned to normal. I feel much better. So don't skimp on your own health. Invest in yourself. Get it checked out.
-
It took about a week for me to tell I had stopped taking it. I think it took a few days to see anything with my DD. But everyone is different.
-
What is the test for Lyme that is definitive?
LNN replied to Dedee's topic in PANS / PANDAS (Lyme included)
I think you're talking about Advanced Labs http://www.advanced-lab.com/ I don't know that it will give you the proof your son needs tho. I think it detects about 80% of Bb infections - I don't think it will detect cysts or intra-cellular (l-form) lyme. And it's not a test for bartonella. But worth calling the lab or checking their site. -
Can you share a brief description of what treatments/medications you've tried? Has he been tested for other infections such as bartonella, toxoplasmosis or parvo? Viruses? Have you looked into issues that can sometimes accompany lyme, such as pyroluria, mold, or heavy metals? Have you tested for yeast or done a stool analysis for parasites, e coli, or other sources of gut/bowel issues? Has his lyme treatment included any cyst-busters like tindamax or flagyl, any biofilm treatments? I ask because sometimes it's not one problem but a mix of problems that we need to unravel. Those of us whose kids have PANS - lyme, mycoplasma, viral infections...sometimes feel like we collect labels for our kids the way some moms collect soccer trophies. But eventually, as we conquer each obstacle, we see more and more of our old kid return. For the symptoms, some of us use excel to track symptoms. A simple way is to give each day a rating - 1-10. 10 being the absolute worst, 1 being a really good day. On the top row of excel, type in the day of the year - you can type 1-365 or the date, depending on how well you know excel. On the row below, type you day's number score. Just before a doctor's appt, you can make a chart of the day/rating and type or write in what event may have triggered a change. So if on the 29th day., you start a certain antibiotic and see a leap in negative behaviors, you can write above the 29th day "started azithromycin" or "had a fever" or "went gluten free" If you know excel well, you can track more than one symptom per day - e.g. OCD=5, insomnia = 3, then make a stacked chart. Here's an article on toxoplasmosis that links it to schizophrenic symptoms: http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/308873/ and one on how toxins can complicate the picture: http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html Don't give up. There are lots of research parents on this forum and if you provide whatever information you feel comfortable, I'm sure there's someone who can offer some things to look into.
-
T - I'm so so sorry. I know you're looking under every rock, every clue. I wish there were some way to help you find the right trail. I remember a few summers ago as we shared stories and how I owed you so much for finding Dr L and helping all of us finally find someone who would help our kids. I feel like it's so unfair that you're still dealing with this. In March, I started this thread about what might be causing my DDs insomnia, http://www.latitudes.org/forums/index.php?showtopic=19878&hl=insomnia- so maybe you'll see something worth investigating. We ended up running a full thyroid panel on DD and it's negative for Hashimotos or other issues. High TSH remains her only issue. I recently found some research that's found an inverse relationship between low zinc = high TSH. So I started zinc supplements with DD and she does seem to be falling asleep just a little sooner in the past week. My DH has been plagued for years with night wakings - something called fragmented sleep. He started taking zinc last week too and the number of times he's waking thru the night is decreasing. I don't have insomnia, but when I slack on my zinc supplement, I don't get the same quality sleep. Some patients with eating disorders have also responded well to zinc supplements. So just one idea to consider... As always, you're in my thoughts.
-
I can't answer the immune stimulating question. But I've posted on other threads that Enhansa brought out such a severe response in my son (major rage/hair trigger temper) that we couldn't stay on it. Some suggested it could be a herx. IDK. Something's been triggering his OCD. He's never had "just OCD" without an infection trigger. But it's also an MAO-I and that's the last thing my son needs, as he is already too high in dopamine. So for him, the stress of being on it was far worse than whatever gains it might've brought. My DD also struggled with it. Curcumin is a high sulfur spice and she needs to avoid sulfur. So two separate reasons, but end result is that it just wasn't a good fit for us, immune-stimulating or not. My son's OCD is improving as I've focused on his zinc/copper balance. Not gone yet, but down to a 1 from a 5 a month ago. And no emotional lability along the way. So sometimes, the thing that's supposed to work for everyone ends up not being a good fit for you. I like this quote from Dr Roberts, the author of the heartfixer document I've used a lot. He's talking about the importance of using supplements/medications that compliment your genetic tendencies.In this case, he's talking specifically about the CBS mutation, which requires you to avoid high sulfurs. "Many nutritional supplements (MSM, N-acetyl cysteine, glutathione) that are good for most people are a problem for you. While certain aspects of your health will benefit from these agents, they will add to your sulfate/sulfite overload problem, adversely affecting the Methyl Cycle Defect that is the common denominator to all of your health problems. Many drugs are loaded with sulfur (sulfates, sulfites, metabolically active sulfur), so if you are CBS positive and I treat your hypertension with the diuretic hydrochlorothiazide, your diabetes with the sulfonylurea drug glipizide, and your urinary tract infection with a sulfa containing antibiotic, I will be lowering your blood pressure, lowering your blood sugar, and clearing bacteria from your bladder, but I will also be adding to your sulfate burden, compromising your biochemistry, and contributing to an ongoing decline in your health. I will be treating the manifestations of an underlying problem and at the same time adding to the underlying problem. If I treat your Mercury overload with DMSA or DMPS, I will remove a toxin from your body, but if you are CBS (+), I will be adding to your sulfate/sulfite pool, and sulfate/sulfite overload due to the CBS up regulation is likely playing a key role in your sensitivity to heavy metals and/or your inability to clear them. " So sometimes, it's not whether Enhansa is god or bad, just good or bad for you.
-
Whether it was mid-life crisis or Pandas that triggered it, I had what I affectionately call my nervous breakdown 2.5 yrs ago(Oct 2010) - 2 yrs into Pandas (2008)- so you survived longer than I did! Everyone will tell you to take care of yourself as you try to hold your family together. Our family therapist repeatedly told me to carve time out for myself and for my marriage. I knew she was right but it just didn't seem practical at the time. It got so bad that close friends were very worried. I was making mistakes left and right. I crashed - and it took a good 6 months for me to go from numb to semi-functional. Now, I can finally say I'm in a good place again. I'm glad your getting help and that you're trying to break the cycle. I hope you're able to make sustainable gains and find true healing!