Dizzysillyak

Hi waterbaby, That's great news about your mom ... can I ask what she's taking ? I take a mito cocktail (Sinatra) of carnitine, acetyl carnitine, magnesium and CoQ10 but can't say that I've noticed anything from it ... I was supposed to add ribose to it but never found one that my body liked. Overall, in the last month, I've noticed an huge improvement in my energy but nothing like you're talking about. Sorry to hear that you're having such a tough time. FWIW .. maybe backing off your supplements isn't such a bad thing. I experienced a lot of healing, gut and otherwise, before I could even digest supplements. Are you eating healthy though ? Things like EFAs, probiotics, digestive enzymes and meat broths are good for our digestive tracts. All I know about those who have multiple autoimmune diseases is that it's very common in celiac families. You've been tested for that though right ? I can't remember ... Since I probably didn't get celiac disease until I was 50 and I developed CFS/FM with multiple neuro symptoms at 34 and have since found out that gluten was causing so most if not all of my neuro problems, I don't think testing people for celiac disease is the answer. I was eating gluten to calm my digestive tract for most of my life ... crackers, etc .. IMHO, eliminating gluten would've eliminated my CFS/FM 20 years ago and I've have never gotten celiac disease and all the immune problems associated with it. Just a thought ... TC ... Marcia

Hi waterbaby, Sorry to hear that you're having such a tough time right now. When I'm feeling stressed, it helps me to think of the worst that can happen and how I'll deal with it. For some reason, this makes me feel prepared ... Communicating with loved ones is critical too. If you need a break, tell your boyfriend you love him, yada yada BUT ... you need to rest right now. Moving is stressful but you can move without being organized about it. Just get some big boxes, label which room they came from and throw everything in them. You'll sort through it when you have the time. And maybe the two of you have some friends or family members who would pitch in. I don't know if this applies, but even though it's hard, try not to take on other people's stressors either. Ultimately, what they do is their decision ... BTW. Since I started taking various nutritional supplements, especially melatonin, theanine and 5HTP for sleep, I'm feeling much better and sleeping great. I'm still on the Paleo / low carb / low oxalate diet but have found that if I eat 3 over easy egg yolks over a homemade flax cracker + any natural meat (I'm eating scallops nowadays) in the morning, I have a ton of energy. AKA .. energizing foods with no food intolerances ... I fizzle out due to OI (orthostatic intolerance) every few hours and have to rest but then I feel great again ... I only really get tired late in the day, like a normal person would ... KOW ... I may have found a way to treat / fix my OI too. I started taking Solgar essential aminos and eating New Tree chocolate bars with guarana and feeling totally healthy but a little too jazzed up. I'm going to look at guarana closer today to see what ingredients it has other than caffeine that may have been helping. I realized recently that I'm having trouble with processing aminos and need to supplement ... l just hope this works ... If you or anyone else in interested, I wrote a recap of what I've done over the last 4 years at www.glutenfreeandbeyond.org in the journey section under GFCanary. The other journeys may give you hope too though ... It's a great board for learning about other nutritional info too ... TC .. Marcia

Thanks Alicia, Sure, I could be allergic to anything at this point. My esoniphils (sp?) have been high on my labs for approximately 2 years now. I've eaten cinamon at other times and never had this reaction though but I'm still not eager to try it again ... part of my reaction was a typical gluten reaction though .. insomnia, jerking, weak arms ... it was the adrenal / heart palps that was new ... BTW. A freind of mine told me that cinamon is high in salicylates too so it could be that too. I hope not, I'm running out of food categories to avoid .. I figure it could've been anything in this cereal that nailed me. I just wondered how many others here are doing this too ... It was a really scarey experience and helped me to appreciate what others are going through .. How quickly do you recover from this ? And did aminos help ? I really should start a new thread but I'm on my way out the door ... TC ... Marcia

Sue, Sounds like trapped gas to me. Have you tried taking gas x or drinking some homemade ginger water (boil ginger in water and let cool) ? Both work for me. Probiotics when in pain can help this too sometimes. I'm glad you're being tested for celiac disease. JMHO .. so many people feel better without gluten in their diets, that it would be worth it to try going GF anyways ... Hope you feel better ...

Sue, Sorry to hear you have this problem too ... I was told that it's because B vitamins cause bad bacteria to grow. It appears to be true too ... All I know is that I can take B supplements and not get UTI symptoms as long as I take 2 AZO with probiotics and C twice a day. I just tried the regular AZO without the probiotics and C and it made my bladder burn so bad that I'm not going to try it again ... I was already taking probiotics, FemDophilus even, and I was still getting this reaction ... I was already drinking plenty of water too . I don't know if cranberry juice would work as well ... tc ... Marcia

Hi there ... I'm still learning about aminos but ... Have you tried taking smaller doses of all the essential aminos several times a day instead of just these 3 in such large dosages ? It seems to me if we aren't handling aminos properly then taking all of them would be more beneficial than just taking these 3. And don't our bodies require other nutrients in order to utilize these aminos ? I can't remember but aren't certain B's essential too ? BTW. I know my body isn't handling aminos properly because melatonin, theanine, 5HTP are helping me sleep so much deeper now. I've had to play with the dosages since it appears that our bodies don't need as much over time and too much of any of these can leave you sleepy during the day. Can you tell me where the study is on aminos and CFS ? Is this a recent study ? Here's a good article on aminos for those interested ... http://www.biology.arizona.edu/biochemistr...sets/aa/aa.html BTW. My body couldn't handle supplements until I'd been on a clean diet for several years. In fact, I still get UTI symptoms from B supplements unless I take AZO with probiotics and C twice a day. I wonder how many of us have to use dietary intervention first ? ETA ... I started experimenting with Solgar's essential aminos several times day because they don't have tryptophan. These are low dose so at this point, I started with 1 a day but now I take 2 at a time at least twice a day.

Hi All, Thanks for posting this link. I was wondering about this myself. I appear to be lacking aminos despite eating a healthy diet and enzymes are made from aminos. Aminos are critical for so many things .. Here's an article that explains this better than I can. I only copied in a small section. http://science.howstuffworks.com/cellular-...ology/cell2.htm Also, I had a weird experience on Sunday where my adrenals were in high gear and my heart was pounding whenever I tried to stand up for more than a few minutes .. I'd eaten some Cinamon Rice Chex (gluten cross contamination + chemicals) that I think caused this but I really don't know for sure. This was the first time I've ever experienced this degree of adrenal stress / heart palps. I was wondering if this is what many of you are experiencing ? I read online that aminos were good at calming adrenals so I drank some beef Marrow water and it helped right away but wore off quickly too. So I took some aminos, including Solgar essential aminos and that helped again. After awhile I ate some beef and was fine ... Here's one of the articles I found on adrenal support ... http://www.drrind.com/therapies/adrenal-su...mendation-sheet I'm not sure how long these episodes normally last but I was over this after a few hours. Actually, that afternoon I felt great ... Has anyone else experienced this and do you know if aminos really helped or does it just take this long for the body to recooperate ? thanks ... Marcia

Hi Ram, I've been taking these for several months now and haven't noticed any change in my OI but I'm going to continue with them anyways. The literature on the benefits of omegas is enough to convince me that they're necessary. I'm beginning to think that my body has been so nutritionally deprived all these years that it's going to take a variety of nutritional supplements to get me over this. A healthy diet alone isn't working for me ... IMHO, the interaction of different nutrients is more complicated than anyone understands at this point so my objective is make sure my body has them all while being careful not to od on any one of them. Too much of anything isn't good either. I have an obvious problem with processing aminos and recently read that the aminos acetylcholine and glycine were found to be deficient in those with OI/dysautonomia so those are on my list to try next ... HTH ... Marcia

Hi Erik, Any idea of what the active components of blood are and how we can facilitate this ? thanks ... marcia I could be in trouble when it comes to sleeping tonight. That Emergenc really gave me a ton of energy ... Evidently, my body needed this.

This brings back horrible memories for me ... The last two times I've been a position where I had to have an IV, I've asked them not to put it in my hand and they've obliged. Granted I heard that the doctor might complain but so far so good ... I know what what you mean by hydrating not being enough. There's got to be more to vein pain than that. I haven't had this done since I started making sure that I'm super hydrated for blood draws .. Being cold makes it ten times worse too and we all know how cold hospitals are ... I remember one doc using a numbing cream on my hand prior to sticking me and that helped immensely too.

OK, I drank an Emergenc about 2 1/2 hours ago and have had a ton of energy ever since. I wish I'd thought of this earlier today ...

I admit I didn't read all of this thread but I wanted to add that I did PT for OI for a couple of months. We only worked on my lower body though and it didn't help my OI at all. I gained muscle strength in my legs of course, but I still got fuzzy headed and winded after 20 minutes of walking / running errands. One thing I found very interesting was that I could ride the recument bike for a whole 10 minutes only if I rode it very very very slowly. When I tried riding it at full speed, my leg muscles went into spasm and I had to quit. If I rode it a little slower, I got winded and my vision got fuzzy and I had to quit ... only at a very very slow pace could my body keep up ... My PT said it's because my body couldn't replenish the blood in my muscles like it should ... Makes sense but I have no idea why. I have a Left bundle branch block which I think may be behind this though ...

Hi again Cat Lady, Good to know you're adjusting quickly to the idea of going GF, but when you start withdrawing from gluten, it won't seem as easy. Hang in there. The withdrawals will go away ... Honestly, I cheated 3 times before I was convinced not to cheat again. Before I forget, there is a website called www.glutenzap.com that is for anyone who is super sensitive to gluten. I hope you're not but just in case. They have been testing all those "gluten free" foods with Elisa testing kits. And they have brands that they recommend ... I'm Paleo (meats, fruits and veggies) so I'm not there much. HTH ... Marcia

This condition is sooooo common for celiacs .. have you been tested ?

I was wondering how long it takes us to replenish our blood supply too. I had quite a bit drawn Monday and I'm still feeling puny and having heart flutters which I don't think I've had since becoming menopausal. I really can't remember how long it took me to recover the last time but it seemed like 2 - 4 days. FWIW. I can manage the fasting blood draw now, KOW, if I eat a healthy meal w / meat as late possible and I salt load and drink plenty of water the day prior. I even managed to run some errands afterwards and before eating breakfast. I drank an EmergenC w/ flax meal, so that helped I'm sure. I think it's partly because my blood glucose is remaining more pretty stable now that I've been on this Paleo / low carb diet for at least a year. Any ideas on how to speed this up ? I've been eating as healthy as possible, drinking tons of water and taking a multitude of supplements but that isn't helping either. It's hard to eat healthy when you're this tired. Oh and resting ... I wonder if this is linked to our dysautonomia too ... low blood volume is an easy explanation but anyone know what can we do about it ? I remember one of the CFS specialist saying that our veins were too small ... oh and our hearts are smaller than normal too ... I think it was Cheney ? Is there a way to widen veins without clogging them ? Oh and my veins roll and/ or hurt unless I follow my pre blood draw protocal. I can tell it's working if my hands aren't prunish looking from dehydration. Oh and I have to lay down for a blood draw too. I used to think I was just a wimp, but now I know it's because it actually makes me feel weak. any ideas would be appreciated ... thanks ...

Hi Catlady, Sorry to hear you have celiac disease but based on my experience you should feel a lot better once you get the gluten and probably other food intolerances out of your diet. Celiacs are known for being unable to digest dairy or other foods. They're also known for having problems with anemia, both B12 and iron, blood glucose regulation (hypoglycmia and diabetes) and thryoid problems ... hopefully, you'll doc will have all your nutrient levels tested too. Here's my story ... I hope it's ok to post this here ... you'll notice that I have a note in the first post referring readers to the bottom of page 2. Here you'll find an up to date recap of what worked or didnt' work for me and could save you some time both from reading the whole thread and in your healing time ... and money on all those GF baking essentials. Problems with all grains, esp sweets, are very common .. And give you hope ... http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=220 Glutenfreeandbeyond is a great GF site too for recipes, etc ... The journey section will show you just how many people have found relief from their symptoms by taking control of their health, some just by eliminating gluten and others by other means, too. I'm still dealing with OI after 4 years on this diet, but I also have a left bundle branch block and a problem getting nutrients from my food still. I'm hoping in time these problems will heal too ... I just started being able to take supplements a few months ago and from what I've seen some are helping me already. FWIW ... I know now that it definitely takes time to heal our bodies from at least 15 years of repeatedly damaging it ... I hope this doesn't overwhelm you. I know I would've been thrown for a loop if someone had told me everything I've ended up trying over the last 4 years. Just take you time and do what's right for you.. hth ... best wishes ... Marcia

Eliminating gluten from my diet has done more for me than I ever imagined. I had ataxia, probably gluten ataxia, that went away after one year on the GF diet. My nocturnal myoclonus and insomnia are from gluten but are responding to taking aminos theanine and 5HTP. KOW. This has led me to believe that many of my symptoms are really from nutritional defiencies. I was diagnosed as a celiac in 2007, based on damage found on my EGD, my DQ2 gene and my reaction to the GF diet ... but my CFS/FM started in 1990 and I successfully ate gluten up until 2005. I'm 54 and have been a DQ2 all my life ... FWIW ... most celiacs I know can eat small amounts of gluten without reacting to it .. NOT ME !!! IMHO, the celiac diagnosis needs to be re-evaluated. If most celiacs can handle small amounts of gluten without having a reaction, the who's really reacting to gluten. Dr. Clark explains gluten sensitivity here ... I'm currently looking into which nutrients can help with OI/dysautonomia and am leaning towards aminos since I responded so favorably to theanine and 5HTP. B vitamins are important for nuero functions but my labs showed that I was great on B's. The aminos that I was tested for were good but I wasn't tested for all aminos. I'm still learning the difference between which aminos are essential and which ones our bodies can produce. I don't know if my body is actually creating the non essential ones since my body has only been healing since 2005. Of course we need all kinds of nutrients but I'm already taking C, EFAs, E, Minerals, etc etc ... I still have OI, but that doesn't mean you will after going on the GF diet because everyone's body's are so different. You may or may not have ataxia or myoclonus, etc etc ... In my celiac support group mtgs and the various GF boards, I found that many gluten sensitive reported having symptoms like mine that went away after going GF. Dizziness is the term I hear used most often and can mean ataxia, OI, hypoglycemia, etc. BTW. I don't know why doctors are sticking to the 6 week or even 3 months trial of the GF diet when Dr. Hadjivassilou tells his gluten ataxia patients that a strict gf diet is mandatory for one whole year. It took me a year to start to walk normally and there weren't any signs at all that I was going to be able to walk again. All of the sudden after one year on the diet my balance issues were gone, then my arms became less heavy and eventually my vision improved ... I was shocked to say the least ... HTH ... Marcia PS. I'm currently on a Paleo / low carb / low oxalate diet which has helped me in many ways but hasn't yet fixed my OI or PEM. Many feel that dairy, soy and corn are as damaging as gluten because these are high in glutamates and glutamates are excitotoxins. I feel great, at rest, as long as I stick to this diet so it's worth it for me.

I've learned all of this the hard way ... In 2005 my whole digestive tract was hurting from top to bottom. I either had diahrea or constipation, GERD, gas, reflux, gastroparesis, diverticuli, hemeroids or something wrong all the time ... then in June 05, I dropped 10 lbs in one month due to constant runs. I was down to 106 - 108 by then and I'm normally 120. Imodium wasn't working ... My GP told me to eliminate wheat, dairy, corn, soy, chemicals and anything I knew of that hurt my digestive tract. In September 05, I was reading on the web and learned about how gluten can affect our bodies. BINGO ... that was me ... a mess ... From there, I went on the Paleo diet to fix my blood glucose problems (chronic hypoglycemia) and while on it, I ate too many high oxalate foods and got kidney stones. FYI .. This is what a lot of people with leaky gut struggle with only I didn't realize it until afterwards. You all may want to look at the oxalates in your diet for urinary symptoms. Too many oxalates can lead to kidney stones and vulvodynia. I'm guessing that most of my UTIs over the years were actually small kidney stones based on my symptoms because I've noticed that if I eat too many oxalates, my UTI symptoms re-appear as does my vulvodynia. (Um, I didn't realize and neither did my GYN that my vaginal pain was vulvodynia until the low oxalate diet eliminated the pain. DUH !!! It had been chalked up to menopause. ) Also though, I'm learning that probiotics help here too. FEM dophilus by Jarrow appears to be helping with some female symptoms and I've only been on it a month. I've been using probiotics since 2005 but this one is working differently ... anyone with kidney stones is low on a good bacteria called o.forminges so my assumption was that vulvodynia could benefit from a probiotic too ... so far so good ... What a trip, eh ? BTW .... on the orthorexia ... I can't believe the psych community came up with a name for healthy eaters. The pics I've seen of those who have this appear to be people who were prone to anorexia to begin with. I'm a very healthy looking 54 year old woman at 5'5" and 120 lbs ... I love to eat. I just refuse to sacrifice my health for foods that make me sick ...

Earthmother, I got thrown into all of this natural stuff in 2005, so I'm still trying to learn how this all works ... I don't react to dairy unless I've eaten it 3 days in a row. And then I only get raccoon eyes which I'm willing to live with so that I can have dairy. My labs were normal for this so I don't show antibodies ... But, my doc, upon seeing my raccoon eyes, told me that I can't eat dairy EVER ... she said that my body is telling me that it can't handle it so I shouldn't be putting it into my body at all. I've heard others who said that rotating foods that they were sensitivce too worked for them, so I thought it was ok too. What my doctor said makes sense though ... that if our bodies are telling us not to eat something, even if it takes 3 days for us to get a reaction, then we shouldn't be eating it ... I'm asking because I've had high esonophils consistently for a few years now, and I'm not sure how's the best way to address all these allergies ... unless it's through healing our guts .. I already am less reactive to mold or perfumes than I used to be. BTW. I've learned to live without these foods and am happy with my diet now ... I'd rather feel good that eat foods I'm sensitive to. Oh ... I forgot to add that from what I've read our bodies weren't designed to digest wheat, soy, corn or dairy so these aren't good for us. And anyone with a chronic illness should eliminate these ... the Paleo diet info explains this better than I can ...

I gave up gluten, diary, soy, corn and chemicals 4 years ago and gave up 98% of grains about 2 years ago and high oxalate foods last year. And I still have OI (Orthostatic intolerance) and PEM (post exertional malaise) but I've improved quite a bit from where I started in 1990. It's obvious now that giving up gluten alone wouldn't have done that much for me ... those GF grains / goodies aren't any better for us than gluten filled garbage food is. These kinds of foods cause spikes in blood glucose levels ... Have you read about leaky gut ? Functional / integrative doctors say that this is the reason for most chronic illnesses. Evidently this idea is catching on because my GI just told me last month that 90% of our immune systems are in our digestive tracts. And he recommends probiotics now ... it's nice to see traditional doctors accepting these ideas. A few months ago, I started being able to digest most, if not all, supplements without feeling sick so my GP thinks I should be over this fairly quickly now ... I'm taking about 30 different supplements, including EFA's, the Sinatra Protocal, B vitamins, aminos and minerals, so we'll see ... basically most of this is the equivalent of a multi + , but I never found one I could digest so I had to try each nutrient separately. BTW. if you're having trouble sleeping, a combo of 3 mg melatonin, 3 - 400 mg theanine and 100 mg 5 HTP has fixed that for me ... I'm sleeping like a log ... go slow if you decide to try this though ... Also, Dr. Hadjivassilou tells his patients with gluten ataxia that it will take them a year to get those gluten antibodies out of their bodies. That's how long it tooke me ... You have to be careful because most of those "GF" foods really have minute amounts of gluten in them .. so you aren't going to heal if you're getting gluten still ... good luck ... Marcia

WB and others, I found this article on niacinamide and tryptophan and thought you might be interested too. I had taken niacinamide at breakfast because Dr. Myhill recommends taking it with the carnitine, magnesium, CoQ10 and ribose energy combo and couldn't stay awake afterwards. A definite trytophan reaction for me. I stopped taking it and haven't done that since. According to Dr. Myhill, niacinamide can convert back to tryptophan. This doesn't happen in everyone of course. Also, I had been avoiding all tryptophan until I read this since it really knocks me out. We need it for the Kreb's energy cycle ... I just opened a 100 mg 5HTP (NOW brand) and sprinkled a 1/3 of it into a tsp of kefir and swallowed it. I've done this 3 nites in a row now and haven't had any negative reactions to it. Remember before I had said it made me feel like my brain had frozen up ... this time I was fine ... I still have to get some Corvalen (ribose) though ... http://www.drmyhill.co.uk/article.cfm?id=426 Hope you're well .. Marcia

Congratulations !!! Sounds like you had a great day ... No mito problems for sure .. hope the rest of it as good ... I'm hoping these mito supps work for me too. I could be missing this, but it sounds like you haven't identified why you're tired some days and not others. Since I started feeling healthy at rest, I've figured out that if I overdid it, I'd be tired (I just have the need to lay around all day long but I don't have any neuro or lymph node symptoms) for 1 - 3 days. This is post exertional malaise and is a hallmark symptom of CFS. I think it was Pacific Labs (?) that just wrote an article explaining this. I'll have to look though ... I'm not sure if or how the OI fits into PEM ... AFTER I've rested 1 - 3 days depending on how long it takes my body to recover, meaning I can get up an about without feeling tired or weak, I'm back to feeling great and can go back to vacuuming, laundry, running errands, marthon cooking, etc. Nothing too taxing though since I'm deconditioned from this DD. Although every once in a blue moon, I get by without getting PEM. I haven't figured out why yet though ... I could never have thrown those kids in the pool. Here's that study on PEM. This is why they think CFS is a detox problem ... http://aboutmecfs.org/News/PRJan09Pacific.aspx

That's great that you don't have any heart problems. I have an abnormal EKG but nothing serious. I've had all the tests so at least I know it's ok. Are you out of gas all the time or just after exerting yourself ? Can you vacuum, etc without getting winded ? And for how long ? Have they looked at your thyroid ? Most of the people in my celiac support group have problems with their thyroids. Mine was slightly off and I was supposed to take meds but they made me too hyper so I had to stop. As soon as I added the salt to my diet I started being able to vacuum for 15 minutes with ease. I was very low on sodium though. I wasn't making sure that I got any during the day ... duh ... But I can't vacuum everyday. I still get PEM (post exertional malaise) for 1 - 3 days after a day of running errands or yardwork. I've been ok today so I may get by this time ... woo hoo ... what a GREAT doctor visit and supportive boyfriend ... This is what my integrative GP says too. Heavy metals and allergies would explain it. ... There is a thread here about mercury. Oh and one on B vitamins ... I just had my easonophils tested and it came back really high ... My GP wanted me to get the ALCAT but it's very expensive and I'm allergic to soooo many things that I can't see spending the money. Chances are since I have leaky gut, I'll end up becoming allergic to whatever new foods I put in my diet. I'ts possible it was from the oil of oregano (OoO) I was taking at the time anyways. Funny thing was that the day after I had that test, I stopped taking OoO and I remembered that I'd completely forgotten to take my Resvinatrol (antioxidant with resveratrol, quercitin, etc.) for a week or so and within 20 minutes after taking it, I felt better ... I just recently read that oxalates bind to heavy metals so by lowering my oxalates, I should be shedding heavy metals too ... we'll see. I haven't done any specific treatments for heavy metals yet. All I did was eliminate the high oxalate foods I was eating so it wasn't such a big change. Kidney stones drove me to going on this diet, but I'm glad I did now. There appears to be a lot more to oxalates than kidney stones ... There is a tumeric thread here that may tell you if it's keeping you up at night ... I only use a little bit occasionally. Maybe someone will see this and let you know too though ... you may want to cut your dosages in half for awhile .. A lot of folks, can get by with certain supps every few days instead of everyday. tc ... marcia

WB, Hi again. I keep reviewing this to see what I can learn from it. I don't think I ever mentioned it but my arms and legs get weak on exertion sometimes but not always so I've been thinking I had a mito problem for awhile now. This is happening off and on during the day but the best example and most consistent one I can give is ... that I live in a 2 story townhouse and typically if I go upstairs to shower or brush my teeth, I have to rest a minute before I have the strength back in my arms and legs. There have been times where I got so winded from going up the stairs that I had to lay down for 30 - 60 minutes before I stopped shaking too. This varies greatly and I've yet to figure out what might be causing this. This was really bad when I was low on iron so I need to check that again. I have a LBBB (left bundle branch block - ticker problem) but my cardiologist doesn't think it's bad enough to be causing me problems. OR is he just thinking I don't need surgery, hmmm ... Maybe I need to wear a heart monitor to make sure though. I can't do the regular treadmill test, can you ? Do you have a heart problem ? I was looking at your supplements and didn't notice any minerals listed. I wanted to mention this since with your food intolerances and previous parasite infection, it sounds like you have leaky gut. Susan from the low oxalate board posted recently that calcium closes the holes in the gut. Those of us with leaky gut and an oxalate problem, take calcium 30 minutes prior to eating anything that is high oxalate (nuts, chocolate, spinach, rhubarb, etc). One study said it was a good idea for anyone with leaky gut to take calcium 3 times a day. It can't have D in it so that makes a bit tougher to find ... I've been taking Enzymatic Kreb's cycle chelates for the last year or so and haven't switched yet. Also, I noticed that you're taking 3 gm of C. C converts to oxalates and high doses is a no no for anyone with an oxalate problem. Susan just recommended that we use Doctor's Best PureWay-C since it doesn't convert as much or at all ... I can't remember ... Vitacost has it though ... I've had 2 - 500 mg carnitine so far. One yesterday and one today and it's not affecting me adversely. How many mg do you take ? I looked at the B vitamins you listed today. They look promising ... But, since my labs showed that my Bs were good so I'm not sure if I need these as long as I eat Paleo. I learned recently that B's encourage yeast growth and for some reason I get UTIs from Bs, so I want to be careful. It could just be the Bs that are digested but I want to be sure ... Aminos for sleep are still working great. I worked in the yard today for about 4 hours and my vision didn't get fuzzy ... yeah ... I was whooped though .. lol ... How r u doing ? Marcia

I couldn't tell you the last time I was in a time out ... I hope you're ok with all of this. I just see all the verbage as healthy heated communication. I got used to it when I was working in a male dominated field ... We'd argue, someone would win, someone would lose and then have lunch together ... I have the feeling Ram knows what I'm talking about ... I wanted to let you know that I picked up some L-carnitine today but not till late this afternoon though so I don't know yet if it helped ... I've been feel better for a few days though. For most of the last 2 years, I was getting a feeling that the blood was rushing into my head and my heart was struggling to keep up with all the blood whenever I laid down. And I was having to lay down frequently because I was getting dizzy .. But since starting the 200mg L-theanine twice a day, one at bedtime and once at breakfast, I'm not doing that. I'm still laying down every few hours because I'm feeling tired and fuzzy headed and I know it's good for my body, but I'm not getting those feelings now. KOW ... I have to research theanine again but I remember starting it because I read that is was good for anyone with myoclonus. My doc recommended it too ... We'll seeeeee ... I want to learn more about amino acids and nuerotransmitters. Any bets on what I'll find on neurotransmitters and OI .. hee hee ... So far, I've had 3 different episodes since 2006 where I felt completely healthy for about a month. No OI, no PEM, no fatigue ... Nothing. I could even run ... The first time was 1 year after going on this diet, then next time was when I added salt to my diet and the next time was when I started drinking alkaline water (eVAMOR) ... Everytime, I got lazy with my diet and experimented with those "GF" foods though, so this time I'm determined to be more careful. This is why I believe I will eventually heal completely. My body remembers what it's like to function, I just have to find that balance again. I may regret saying this ... but I keep running into groups that insist that their condition is different or special somehow. What I've found is that barring a physical problem such as a brain tumor, etc., a symptom / condition is just our bodies way of telling us something is missing. IE ... Some of us get myoclonus while some of us get grand mals, but it's basically the same message. The brain requires certain nutrients to function and how our bodies respond to that loss varies from one person to the next ... Dysautonomia is more complicated that seizures because multiple organs are involved, but if the other organs seem to be working then brain nutrients need to be addressed .. make sense ? Marcia