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Dysautonomia? Or Mito Disorder?

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:lol::lol::lol: 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 ... :rolleyes: 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

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Yes - makes sense!

Let me know what you find out about neurotransmitters. I find it weird that SSRI's, tryptophan (sp), 5-HTP, and serotonin all exacerbate my symptoms. And I mean symptoms x10!

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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

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Interesting - I don't get weak in any specific area I just loose steam overall. The analogy I use is it's like asking a car to go another 50 miles after it's already run out of gas. I have never had any heart issues (Holter monitor, EEG several times, other cardio tests) - mine is strictly an energy issue. I've done a leaky gut repair program thru Metagenics (Ultra Clear Sustain) and found it to be good. I've had candida, iron, and additional parasite testing conducted and the all come back squeaky clean.

I had the most excellent dr's appt yesterday. I went to a gyno I totally selected simply because she is less than a mile from my house. I have not gone in 4 years and with all the hormonal issues I have a lot of spotting, etc (I'll spare you the details for all the men on the site). Anyway - I wanted to HUG her! (Summer - she's another angel!!!) When I left I said "I'm so glad you are a doctor!" She said everything we've been talking about! How the gut is the source of all our (collective - CFS, CIDP, ANS issues, etc) problems and while it leads to different manifestations, when you clear up the gut - regardless of the malady - you often improve. She talked about vaccinations kicking off a domino effect and how grains are, in general, a bad idea based on how we process them in the states. She had a client who was so sick and went on a 'final vacation' in Italy and had NO PROBLEMS. She felt so good over there and the food is so clean (by way of processing) that she had no allergy responses at all. She decided to move!

My standard labs show that my b's are good, too. You have to run them in a specific way. Dr. Derrick Lonsdale (former head of Biochemical Genetics @ Cleveland Clinic) is the one who ran them for me (long-distance) through his King James Lab. If I were you I would start there. Plus - the B1 through the skin or intramuscular may not have the same yeast problem as oral.

I don't know much about oxalates. I'll have to look into that a little more. Right now I'm feeling SO GREAT on the Mayo Mito Cocktail and my extra B1 and my existing diet that I don't really want to rock the boat.

Per my new gyno's advice, I'm going to get my allergies and heavy metals tested to see if there's anything else there. My boyfriend is going to do it too (he does everything I do sort of out of solidarity - how cute is that?!). I'll report on the flip-side.

-WB

PS - I do find that I'm having a hard time sleeping. This is new since I began taking tumeric and extra B1 orally. I have a LOT more energy during the day so it would kind of make sense that I'd be buzzing a little at night. Anyone else have this issue?

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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. :blink: 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

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I just got back from swimming in the pool for 2 hours with my 5 year old and 3 year old cousins! I was throwing the 5 year old around and chasing him and splashing him. It was a rigorous 2 hour work out and I feel TOTALLY FINE! I'm telling you - now that we figured out that it's mitochondrial and I'm taking the appropriate supplements, it's making all the difference in the world.

I don't know what to say - I'm speechless! In regard to your energy question (specifically vacuuming) it would depend on how I was feeling that day. Some days I could vacuum the whole house no problem - some days I couldn't get out of bed. What I (now) know about mito disorders is that you can never overspend without it costing you. If the tank is full - use the energy. If it's empty - rest.

I should probably take it easy the rest of the day. Going to acupuncture and then I will relax. It's been a GREAT DAY. :)

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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

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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

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I've been on vacation for the last week and change. The day we left I was feeling a bit off (after a 2 week stint of feeling AMAZING!). We vacationed in a very deserty, hot (97-100 degrees) spot for 5 days and, truth be told, I was a disaster. I was completely void of energy and feeling pretty sick most of the time. I have NO idea why. Was it the heat? The fact that we were in a grass/weeds zone and I seem to be allergic? I had glassy, puffy eyes, too, all the time. Does anyone know what that is?

On Friday we traveled to a different climate (less hot, on the water) and I've been feeling like a CHAMP ever since. I must say - even though I had that rough 5 days, my 'bounce-back-ability' is significantly improved. I don't seem to suffer from PEM much anymore at all. The only think I can point to is the Mito cocktail - and the B1 injections.

Amazing.

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Question for Dizzysillyak: Is niacinamide(sorry for sp) the same as niacin? Niacin can cause the problems with heart irregularities and problems with blood vessel constriction. I was taking high amounts before my severe POTS kicked in and suspect that is what triggered the severe episodes. How has the 5htp begin working for you? I'm very interested in it.

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Hi guys:

Thought I'd bring you up to speed on an interesting development. This summer my mom came down with CIDP - Chronic Inflammatory Demyelinating Polyneuropathy. It's the chronic form of Guillain-Barr? Syndrome. Both are neurological and attack the ANS. My mom has a bunch of autoimmune disorders like Lupus, Rheumatoid Arthritis, Raynaud's, Shogren's, etc. The CIDP was just a new disease to add to the mix. We've both been curious if she would benefit from my mito cocktail. She's been seeing this new doctor who gave her some mito supplements that have most of the mito cocktail elements in one pill. The dr said that taking them simultaneously somehow has a more powerful effect. She was told to take 6 tabs in his office and she says she felt the effects immediately. Here's the crazy thing - she's 95% back to normal! You have no idea how amazing this is! For 6 months my mom could barely walk, couldn't feel her feet, legs or hands, was completely void of energy and was deteriorating fast. She was hospitalized several times and given an IVIG - plasma replacement. They did that several times over the course of 6 months and it had mild, if any, success - and always only for a short time. Since taking the mito cocktail, my mom is BACK. To me this provides even more evidence that I (we both) have a mitochondrial disorder - as many mito disorders are mDNA, or passed through the maternal DNA.

The news on my progress is not as winning :( However I'm going to cut myself some slack as it has been a very rough year (understatement extraordinnaire!). I'm still recovering from surgery (October) and my GI track has shut down such that I have been unable to take my supplements with any regularity. I will report back once we are into 2010 a bit more as I anticipate I will have had a few months of 'normalcy' by then supplement wise and can give a clearer picture as to the effects of the mito cocktail.

PS - all my blood/urine tests came back inconclusive. The only thing left is to do a day/night urine test and a muscle biopsy. I'm foregoing the biopsy. Just going to take the pills and see what shakes out.

-WB

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Waterbaby,

That's amazing (and wonderful!) news about your mom. I hope her return to (mostly) health continues, and rubs off on you!

Amy

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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

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Marcia:

I was tested for celiac and tested negative however I do have a powerful gluten intolerance. Most of my neuro symptoms were the cause of, or aggravated by, gluten. I've been GFCF for about 3+ years and it's made a big difference.

My mom is taking something called TOTAL MITOCHONDRIAL by Nutri-West. I can't take it though because it contains wheat (so that means you can't take it either, right?). However here are the ingredients:

Vit C, Vit E, Vit B1, Niacin, Folic Acid, Selenium, Maganese, Zinc, Copper, Magnesium, Sodium, Niacinamide, Vit K, Alpha Lipoic Acid, CoQ10, Acetyl L-carnitine, Acetyl Cysteine, L-Glutathione, L-Tyrosine, L-Glycine, L-Glutaminc Acid, Phosphatidyl Serine

I'm just now starting to gingerly get back into some supplements but I figure it'll take me several months before I can ramp up to full throttle. I am taking UltraClear Sustain for my tummy during this no-supplement time and it packs a good punch while tending to my gut. It also gives me some protein, carbs, and fat since I'm down about 16-20 pounds since August - and I'm a pretty small nugget to begin with so I'm verging on skeletal - not cute :(

-WB

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WB,

That's great that you know about gluten. Whew ... that stuff about killed me. Have you read about glutamates ? Dogtorj has some great info on this. If you need a link I can get it real quick ... he thinks that gluten, dairy, soy and corn which are high in glutamates cause a lot of neuro problems. I can't handle any of these but didn't realize they were connected.

Here it is ... While looking this up, I just noticed his reference to melatonin and serotonin ... yeah ...

http://www.dogtorj.net/id99.html

By applying The G.A.R.D., we put an immediate Band-Aid on the situation by dramatically reducing the glutamate load on the diseased neurons, liver, and intestinal cells. This has halted seizures, literally overnight, in otherwise refractory seizure patients. Again, I cannot over-stress how well this has worked. But the long-term recovery of the epileptic comes from the same restrictive dietary approach, as it allows the gut to heal and function better. This includes the return to proper nutrient absorption as well as the production of serotonin and melatonin, two hormones that are vital to our health, especially to that of the central nervous system. That is why I now also refer to The G.A.R.D. as the ?gut absorption recovery diet?.

I wrote down the ingredients in your mom's supplement ... I take most of those .. thanks ..

Good luck with the Ultraclear ... I was taking Ultra clear but not sure if it was the same as ultraclear sustain ...

Time for me to watch desperate housewives ...tc ... Marcia

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Ever had an electromyography done? This will tell you exactly where the problem is..

I knew I had dysautonomia but that test helped me figure out what type of nerve damage it was exactly. There's a long list of different types of peripheral and polyneuropathy and all can have an autonomic component but the causes are different. After that test, I learned that I have a distal axonopathy with a sensory, motor and autonomic component. I'm working with a neurologist to find the cause. Most likely, it's viral in origin.

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I am not a mito expert by any means but I did want to say that they best way to treat a mito disorder is to first find out which disorder that you have. My daughter was diagnosed with a complex V mito disorder. This means that her body as problems with ATP syntheses. The cocktail that she is on is different than someone with a complex III disorder would be on because different systems are effected. We saw Dr. Shoffner out of Atlanta for her diagnosis. He one of the top mito docs in the country. He is starting new drug trials so hopefully there will be other treatment options forthcoming.

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