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Dysautonomia? Or Mito Disorder?


cordila
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In 2006 I was diagnosed with dysautonomia. After 4 minutes on the TT I went from 106/56 pulse 76 to 79/47 pulse 112. For the next few years I tried salt loading, water loading, compression hose, etc - none of those elements helped. I never had problems getting out of bed in the morning, could take a hot shower with ease, and was much better lying flat in bed vs. having my head slightly elevated. I did have some symptoms like abdominal distention (that I assumed was stomach pooling) and a hard time standing for prolonged periods of time. And then there was the crushing fatigue, adrenalin rushes, constant nausea, etc., which all resembled the dysautonomic symptoms I've heard all of you talk about.

I did, over time, find some things to help manage some of the symptoms like a gluten, dairy, caffeine, alcohol-free diet and a transdermal vitamin B1 lotion that I applied daily. That got me out of my parents house and mildly functional most days.

But after a huge backslide due to seasonal allergies (I'm new to Seattle - which is a high-growth area) I landed at a new endo who promptly diagnosed me with a mitochondrial disorder (empirically - low serum B1, off the charts pyruvic acid backed up in my blood, and low parasympathetic nervous system activity. We are also going to explore my cell-oxygen availability as I get cold, blue feet all the time [NOT blood pooling] and it would make sense as pyruvic acid splits into o2 and acytel-choline). Now, as I look back, I can see that after the TTT they gave me a bag of fluids and sent me home telling me I should be fine. But instead I was bed-ridden for 2 weeks and had to crawl to the bathroom. I can see that every time I overextended myself I was bed-bound until my energy stores could fill themselves up again - even if just a little bit.

I have recently begun a vitamin regime posted by Mayo Clinic for mito disorders and would you believe my lifelong battle with nausea has all but disappeared! I'm still dealing with bone-crushing fatigue and cannot overextend in the slightest but I've upped my oral B1 from 55mg to 255mg and my IM B1 from 10mg 2x's/wk to 20mg 2x's/wk and am hoping that will help.

But here I sit, completely confused. Do I? Did I even have dysautonomia in the first place? I feel so silly as I have educated my entire friends and family on dysautonomia and now I'm not even sure if that's the appropriate diagnosis anymore.

Does anyone have any insight? -WB

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Yeah I foudn your last post on the topic interesting. There is active research on the parasympathetic nervous system in POTS and its action accounts for the success some patients experience with mestinon - which increases the action of acetyla-whatever at two different types of para sympathetic receptors while also increasing sympathetic activity in a way that lessens the baroflex reaction.

Do you have visual issues? Visual snow, etc?

I'd talk to your doctor about mestinon.

There appears to be two main branchs of POTS other than leg poolers - those who have symptoms from sympathetic overactivity and those that have symptoms from faulty parasympathetic activity, leaving the sympathetic system unapposed in a way.

How this relates to a mito disease I am not sure of, but if it is resulting in a faulty parasympathetic system the end result would be a type of POTS.

Edited by flop
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All this makes me wonder if there is other treatments for some of us...thanks for posting your info!

I do have to keep my allergies in check or my symptoms get worse, too. I still find that odd, but I take my allergy meds to keep things under control.

I take Mestinon and it DOES help my fatigue. I didn't think it would! You have to find the right dose for you and if you go too much, boy do you have a bad day or two (overdose symptoms listed in the pamphlet). But a right dose helps me...

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Hi Waterbaby. I am very interested in your post.

Can you please tell me more about your mito symptoms?

In general I think dysautonomia is probably always secondary to something else.

In our case, it may be Ehlers Danlos ... but it also may be mito disorder ... or both.

I will be bringing my daughter to see a mito specialist soon. Both our epi neuro and aut neuro suggested this.

My daughter will likly go on the mito cocktail. (supps)

One of my daughters most concerning symptoms is she has awful cycles of nausea and vomiting.

Every three weeks or so she has a day or two of N&V ... but the more concerning part of the cycle is she desats (her o2 drops while sleeping) a lot the night before her vomiting begins.

There is a long list of autonomic sysmtoms that occur with these cycles.

We have not been able to firgure out completely whether or not these episodes are autonomic without seizure ... or if it is all autnomic seizure.

Anyway, I'd love to hear about more of your mito issues and what has helped.

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Hi Everyone,

This past week I went to see a mitochondrial specialist about my symptoms and the mutations found in my mitochondrial genetic testing. Here are a few links that those of you who posted before me asking about symptoms might find interesting. Notice that autonomic dysfunction is a symptom of a mitochondrial disease.

http

://my.clevelandclinic.org/disorders/Mi...l_Disease.aspx

http://my.clevelandclinic.org/disorders/Mi...l_Diseases.aspx

http://my.clevelandclinic.org/disorders/Mi..._Resources.aspx

http://www.umdf.org/site/c.dnJEKLNqFoG/b.3...k.BF32/Home.htm

(The mitochondrial disease handbook on this site is especially informative about symptoms and treatment).

Good luck to everyone!

~ Broken_Shell

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Hi Water,

My symptoms are exactly like yours, it was a long 4 years before I could get any doctors to give me a TTT. Then after reading some posts on here about mito I talked my PCP into sending me to a geneicist ( had to wait 3 months ) but my appointment was two weeks ago and this doctors wants to send me to Atlanta to see Dr Shoffner and his mito clinic for further testing. Some doctors do think dysautonomia is a mito disorder, others feel it's a symptom of a mito problem, still others feel there's no connection. For a group of us it's worth getting a muscle biopsy to rule it out. Good luck with your search, keep us updated on your progress.

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Thanks for all the replies! JJB, you're post stopped me in my tracks! I find it very interesting that the O2 levels drop before her cycle begins, esp that they drop 'during the night'. My first episodes began nocturnally and they carry on to this day. So what happens during the night?!

There were a lot of questions so I'll try to answer them all. My mito symptoms are not hugely dissimilar to my dysautonomic symptoms. In order of severity, my problems are/were: nausea, fatigue, anxiety/adrenalin, low BP. Those symptoms kick off a host of other symptoms like hormone deregulation, low thyroid, extreme audio/visual sensitivity, etc. Again, you'll see most of those look pretty autonomic. So here's where it starts to look very mito: when I overexert I simply cannot refuel without rest - rest way out of proportion to exertion. So the POTS exercise-makes-better theory for me does not work. In fact, it is to my detriment. Also, I have something I call 'crashes' or feeling 'crashy'. I know others speak of this too but this is what it looks like in me: my entire face falls. It is the weirdest thing. My eyelids droop (very mito) and my wrinkles become very pronounced (O2 related?) and it's almost as if my skin falls away from the bone. I look like another person entirely. Additionally I had fairly severe gastroparesis and nausea that has all but disappeared since going on the Mayo Mito Cocktail. Now I'm just stuck with the fatigue but I've ordered an O2 meter this morning and will report my findings. I also have the strangest nocturnal episodes. They wake me up generally around midnight to 2am and the symptoms can be anything from massive stomach distention (while lying down!), nausea (though now much less frequent), adrenalin rushes. I think it's interesting to note that my episodes began when I was 7 years old and they began with extreme nausea waking me up in the middle of the night. I strangely never vomited from the episodes but certainly felt as though I would.

OK - what has helped thus far:

Mayo Mito Cocktail (Vit E, L-carnitine, Alpha Lypoic Acid, Selenium, Vit B complex, CoQ10)

My own cocktail (3g Vit C, 300mg Vit B1 orally, 40mg B1 transdermally, 20mg B1 2xs/wk IM, probiotic, transdermal magnesium)

Diet (absolutely NO: gluten [including spelt and millet], dairy, alcohol [although strangely hard alcohol is OK sometimes but NO champagne <the worst!>, wine, or beer], caffeine)

To treat my episodic flare-ups I do the following:

Nausea - ice pack on my belly (I mean ICE pack, not just cool-ish - COLD)

Shakes - increase in TD B1 and ice pack on my belly

Gastroparesis - hot sock on my belly

Fatigue - rest rest rest in a very quite location, must be completely horizontal

In regard to the Mestinon (and no - no visual snow or disturbances of any kind really), after trying loads of drugs (Florinef, beta blockers, SSRI's, etc.) with disasterous effects I've officially opted out of medicinal assistance. Chiefly because I am on the hunt for the ultimate remedy not just medicinally induced relief of symptoms. I know this may mean I am on the road much longer or may suffer through symptoms when I need not but I just feel that my body does not metabolize ANY meds (even simple aspirin) and I have to listen to that. I also feel that, while meds may help a handful of symptoms, they often create others by inducing an artificial environment. Like Mestinon - flooding the system with acetyl-choline - that's great in the sense that acetyl-choline is required for the parasympathetic nervous system to function however it does not address the fact that acetyl-choline is produced by the splitting of pyruvic acid (the other molecule splits off into oxygen) which is shuttled into the mitochondria by thiamine. So I would still have a thiamine deficiency and deal with hypoxia. I understand that many are helped by meds so this is simply my own personal philosophy.

Thanks for the articles, Broken-Shell, I'm going to set about reading them straight away. Toddm1960, please let us know what your doctors say. I'd be open to a muscle biopsy but thus far my endo is 100% convinced based on the empirical evidence so we're currently opting-out of the painful and expensive procedure.

Again - I so appreciate your responses! We might crack this code yet!

-WB

Edited by flop
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Thanks ... this is interesting. We have a lot of symptoms in common and I'm gluten, etc free too. I noticed that you're eating spelt and spelt has gluten in it.

http://celiacdisease.about.com/od/faqs/f/Spelt.htm

Millet is a problem for many celiacs because it contains gliadin. I can't remember the science behind this exactly. It's been years since I researched this. Actually, a large percentage of celiacs / gluten intolerant people don't do well with any grains. Me included. I've found that the Paleo diet / low glycemic makes me feel best. Sticking to it is a problem though ... but I'm working on it. ;)

Also, I started taking EFAs (essential fatty acids) like fish oil (Metagenics brand), Cod liver oil (Carlson's) and E a few weeks ago and my cold hands and feet appear to be gone. Dr. Perlmutter has some interesting info on how EFAs affect our neurological systems. You have to get a good brand of these to avoid dioxins.

I have some info on this site about this, but I'll have to find it again ... EFAs are necessary for our bodies to utilize insulin and glucose properly too. I started Evening primrose oil about 2 weeks ago, but can't say that it's had any additional beneficial affects. It's just another EFA ...

I've found out recently that if I accidently eat gluten, many of my symptoms re-appear. This time I had myoclonus, insomnia, visual problems, migraines, gastroparesis, constipation, fatigue, etc. I say this just in case you're taking chances with those "GF" processed foods. These get me everytime.

I keep trying to remember to get some l-carnitine. I wonder if the Mayo cocktail is really Dr. Sinatra's ? I didn't see CoQ10 in your list though ...

Like you, I'm working on healing my body instead of using meds. I don't do well with any meds anyway so there's really not much choice.

Have you had stool testing for parasites, bacteria and candida ? Or the nutritional panel ?

I almost forgot ... I still wake up in the middle of the night unless I eat some meat a few hours prior to going to sleep. Not sure why this works, but it does ...

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Thanks ... this is interesting. We have a lot of symptoms in common and I'm gluten, etc free too. I noticed that you're eating spelt and spelt has gluten in it.

No - I am NOT eating spelt, millet, or amaranth. Sorry for the confusion. I ONLY eat rice, corn, or potatoes.

http://celiacdisease.about.com/od/faqs/f/Spelt.htm

Also, I started taking EFAs (essential fatty acids) like fish oil (Metagenics brand), Cod liver oil (Carlson's) and E a few weeks ago and my cold hands and feet appear to be gone. Dr. Perlmutter has some interesting info on how EFAs affect our neurological systems. You have to get a good brand of these to avoid dioxins.

I have been on and off with EFA's. Same with Cod liver oil. I do take Vit E as a part of my cocktail.

I keep trying to remember to get some l-carnitine. I wonder if the Mayo cocktail is really Dr. Sinatra's ? I didn't see CoQ10 in your list though ...

Yeah - CoQ10 is on there. Get some L-carnitine. I think it's made all the difference with me.

Have you had stool testing for parasites, bacteria and candida ? Or the nutritional panel ?

I had a massive parasite infection a few years ago (this is possibly what set of my dysautonomia symptoms as I had been managing my episodes pretty OK up until that point). I got rid of them through energy medicine (acupuncture/acupressure). Say what you will about energy meds but I have to say my 'real' doctor was wanting to put me on chemo to get rid of the parasites but wanted to 'wait until I gained weight'. Let me ask you this - how was I supposed to gain weight when parasites ate everything I put into my mouth anyway! Crazy doctors! I tested fine for Candida. I'm not sure what you mean by nutritional panel. I don't think I've ever done one.

I almost forgot ... I still wake up in the middle of the night unless I eat some meat a few hours prior to going to sleep. Not sure why this works, but it does ...

HA! I'm so glad you said this! I ate rice just before going to sleep last night and slept like a baby. Why is it I always forget that trick?!

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You can definately have both mito and dysautonomia. I'm told I have both. Lack of energy due to mitochondrial dysfunction can cause nerve dysfunction. Are you going to have a muscle biopsy?

Hi Hanna: I don't think so. Not at the moment. I feel like that's an expense (and pain) I don't really need to endure as my endo (and I) feel pretty confident this is the issue. And the treatment for Mito seems to be working so I figure I'll continue down this path and see where it takes me. What would a muscle biopsy do exactly? Just confirm the mito? Or would it give information about specific treatments that might help?

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Hi again,

Oh, I see now that you said you didn't eat millet, spelt or amaranth. Duh ...

It took me between 2 weeks and a month before the cold feeling in my hands and feet stopped. I read that it takes quite a bit of EFAs to make a difference in those with neuro problems. I saw recommendations as high as 12,000 mg a day for Raynaud's. ;) I'll look for that info in a minute but I found this info while googling the RDA for DHA and EPA ... and Perlmutter. He's a well respected neurologist who's up on all of this .. .

Here's the fish oil I'm taking. http://www.metagenics.com/products/detail.asp?pid=258

I'm taking 2 of these + 1 Carlson's Cod Liver Oil (1000mg) + 1 Enzymatic E (400 mg) + 1000 mg of Royal Brittany Evening primrose oil twice a day. I checked and was told that these are gluten free. I tried cutting back 2 days ago, but I can tell a difference already.

That's intersting that rice works for you. I haven't tried it ... I just don't feel well when I eat grains right now.

Nutritional panels look for your nutritional deficiencies. Most celiacs have these. My doc used Spectracell. They have a website. I'm on the Paleo diet so I was actually good on most of them, except for chromium and E. Spectracell also tests for cholestral, insulin resistance, our bodies ability to detox, etc. My detox and insulin panels were off ... An integrative or functional doctor can order these for you.

That ***** that you had to treat parasites but great that you don't have a candida problem ... I was parasite free, but have a problem with candida. I continue to struggle with the diet for this. I was doing well then I had company for 3 weeks and she wasn't on the candida diet ... so I cheated ...

Have you looked at oxalates yet ? I got my first kidney stone in 2007 from eating too many nuts, raw spinach, etc and learned about this. I didn't even realize that I had vulvodynia until going on the low oxalate diet got rid of it ... :D I just thought it was menopause pain or vaginitis ... duh ...

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Here are those links ...

Dr. Perlmutter (nuerologist) explains here how our bodies use fats to create prostaglandins. He says that these are responsible for calming and/or upregulating our immune systems. Prostaglandins 1 and 3, created from omega 3 and 6, calm the immune system while prostaglandin 2 created from saturated fats activate our immune system.

http://books.google.com/books?id=uWIuXSHDg...num=9#PPA556,M1

This article states that EFAs help our bodies process glucose. This article is on diabetes but I'm sure you all know by now that you don't have to have diabetes to benefit from watching your blood glucose levels.

http://www.brighthub.com/health/diet-nutri...cles/21562.aspx

This article recommends taking 12 grams of fish oil daily for Raynauds (I have this too).

http://www.umm.edu/altmed/articles/eicosap...acid-000301.htm

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Back again .. I wanted to ask you what B1 you take ? and why the two different types ? Oops, make that 3 types of B1 ...

I can't take a B complex without getting a UTI so I'm trying to learn about the B vitamins so that I can take them separately. I've been on B12 several times but never noticed a difference but I continue to take it anyways. And I started taking P-5-P this week.

This is a lot to learn, huh ?

waterbaby said ...

Mayo Mito Cocktail (Vit E, L-carnitine, Alpha Lypoic Acid, Selenium, Vit B complex, CoQ10)

My own cocktail (3g Vit C, 300mg Vit B1 orally, 40mg B1 transdermally, 20mg B1 2xs/wk IM, probiotic)

Diet (absolutely NO: gluten, some grains [including spelt, millet, amaranth], dairy, alcohol [although strangely hard alcohol is OK sometimes but NO champagne <the worst!>, wine, or beer], caffeine)

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I just wanted to chime in on the dysautonomia vs mitochondrial disease diagnosis question.

Dysautonomia conditions such as POTS (your TTT results show POTS) are diagnosed based on abnormal functioning of the autonomic nervous system (sympathetic and/or parasympathetic branches). However a diagnosis such as POTS only describes what is happening in your body, it doesn't give any information as to why it is happening or what the underlying problem is.

It is quite obvious that there are lots of different causes for dysautonomia. Mitochondrial disease is one cause of dysautonomia. By treating the mitochondrial problem you are treating the reason for your dysautonomia and hopefully your symptoms will continue to improve. Your 2006 diagnosis wasn't wrong, you do have dysautonomia just that at that time you didn't know why you have dysautonomia.

I hope that makes sense?

Flop

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waterbaby and others ...

Here's why I mentioned oxalates earlier.

This is by Susan Owens a well respected researcher in the autism world. She hosts this oxalate site. In here she has some fascinating info on how mitochondria are damaged and how this affects our mtDNA.

http://health.groups.yahoo.com/group/Tryin...s/message/23143

Quote:

I just wondered if there was any link that you know of between

oxalates and Mitochondrial disorders?

Absolutely. Most of the molecules that oxalate inhibits the most are mitochondrial.

Oxalate impairs both pyruvate kinase and pyruvate dehydrogenase.

Oxalate impairs glycolysis, glucoeneogenesis, the citric acid cycle and the electron transport chain in Complex II.

Obviously, because of where these enzymes function, these effects are mitochondrial.

Oxalate also oxidizes glutathione and that creates the atmosphere for defects to accumulate in MtDNA.

As the article below suggests, these defects multiply via clonal expansion.

Listmates need to be aware that gene defects in MtDNA are acquired all through life...especially in tissues under oxidative stress.

Finding a gene defect in a mitochondrion does not mean that effect was inherited.

See articles below finding again, chemotherapy, and alcohol can all cause enough stress in cells to induce mtDNA changes.

There can be thousands of mitochondria in some cell types. This is why mutations that occur individually in them would take a lot of time to get reproduced waiting for the mitochondria to split in two, while older mitochondria are destroyed by autophagy.

Most of the proteins in mitochondria are imported as products of nuclear DNA, so it is tricky what people mean by mitochondrial disease and how they verify that it exists.

I found some very interesting new materials recently suggesting that mitochondria with similar genetics may find each other and form tubes that are more reminiscent of the endoplasmic reticulum.

Some of the diseases that people looking at mtDNA in aging think are related to accumulated mutations in mtDNA are now showing up in children when these diseases used to be seen only after someone got older.

But these acquired mutations do not take place equally all over the body but are more concentrated in some organs than others, so there are environmental issues even within a body that determine where lots of mtDNA mutations will take place.

When "mitochondrial disease" just means these organelles aren't working well, then the reasons for the dysfunction can be remote from mtDNA.

Kerry, was your daughter eating any grains at all before LOD.? It may be best to leave the grains off altogether for right now. You don't want to be increasing the oxalate in her diet more than it was before!

Lorelei told us recently that the VP Foundation found that even white rice flour is not that low.

"The info is from the latest issue of the VP Newsletter #29. They tested Bob's Red Mill Stone Ground White Rice Flour. And it came up as 22.5 per .5 cup. Or 28.5 per 100 grams

of flour.

This explains alot for me as well!

For example:

A slice of gluten free rice bread from EnerG or Food For Life, weights about 45 grams per slice. (the weight accounts for other ingredients i'm sure, but-) that could still be like over

30 oxalates for a sandwich."

Obviously, we need to really watch it on the quantity.

Susan

Free Radic Res. 2006 Dec;40(12):1284-94.[] Links

Mitochondrial DNA damage and the aging process: facts and imaginations.

Wiesner RJ, Zsurka G, Kunz WS.

Faculty of Medicine, Institute of Vegetative Physiology, University of K?ln, K?ln, Germany. rudolf.wiesner@...

Mitochondrial DNA (mtDNA) is a circular double-stranded molecule organized in nucleoids and covered by the histone-like protein mitochondrial transcription factor A (TFAM).

Even though mtDNA repair capacity appears to be adequate the accumulation of mtDNA mutations has been shown to be at

least one important molecular mechanism of human aging.

Reactive oxygen species (ROS), which are generated at the FMN moiety of mitochondrial respiratory chain (RC) complex I, should be considered to be important at least for the generation of age-dependent mtDNA deletions.

However, the accumulation of acquired mutations to functionally relevant levels in aged tissues seems to be a consequence of clonal expansions of single founder molecules and not of ongoing mutational events.

PMID: 17090418 [PubMed - indexed for MEDLINE]

1: Mutat Res. 2003 Apr 9;525(1-2):19-27.[] Links

Changes in the human mitochondrial genome after treatment of malignant disease.

Wardell TM, Ferguson E, Chinnery PF, Borthwick GM, Taylor RW, Jackson G, Craft A, Lightowlers RN, Howell N, Turnbull DM.

Department of Neurology, The Medical School, University of Newcastle upon Tyne, Newcastle upon Tyne NE2 4HH, UK.

Mitochondrial DNA (mtDNA) is the only extrachromosomal DNA in human cells.

The mitochondrial genome encodes essential information for the synthesis of the mitochondrial respiratory chain. Inherited defects of this genome are an important cause of human disease.

In addition, the mitochondrial genome seems to be particularly prone to DNA damage and acquired mutations may

have a role in ageing, cancer and neurodegeneration.

We wished to determine if radiotherapy and chemotherapy used in the treatment of cancer could induce changes in the mitochondrial genome.

Such changes would be an important genetic marker of DNA damage and may explain some of the adverse effects of treatment.

We studied samples from patients who had received

radiotherapy and chemotherapy for point mutations within the mtDNA control region, and for large-scale deletions.

In blood samples from patients, we found a significantly increased number of point mutations compared to the

control subjects.

In muscle biopsies from 7 of 8 patients whom had received

whole body irradiation as well as chemotherapy, the level of a specific mtDNA deletion was significantly greater than in control subjects.

Our studies have shown that in patients who have been treated for cancer there is an increased level of mtDNA damage.

Copyright 2002 Elsevier Science B.V.

PMID: 12650902 [PubMed - indexed for MEDLINE]

J Hepatol. 1997 Jul;27(1):96-102.[] Links

Multiple hepatic mitochondrial DNA deletions suggest premature oxidative aging in alcoholic patients.

Mansouri A, Fromenty B, Berson A, Robin MA, Grimbert S, Beaugrand M, Erlinger S, Pessayre D.

INSERM Unit? 24 and Centre de Recherche de Physiopathologie H?patique(Association Claude Bernard), H?pital Beaujon, Clichy, France.

BACKGROUND/AIMS: A 4977-base pair deletion has been detected in the hepatic mitochondrial DNA of alcoholic patients with microvesicular steatosis, a lesion ascribed to impaired mitochondrial beta-oxidation.

However, only a single deletion had been looked for in this previous study, and it could not be determined whether the deletion was preexisting or acquired.

Alcohol abuse increases the formation of reactive oxygen species in hepatic mitochondria.

If this effect accelerates the oxidative aging of mitochondrial DNA, several other mutations would be expected.

METHODS: The mtDNA region extending from nucleotide 8167 to nucleotide 14246 was screened for the presence of large mitochondrial DNA deletions in 58 alcoholic patients and 67 age-matched non-alcoholic controls.

Hepatic DNA was subjected to polymerase chain reactions that amplified non-deleted and deleted mitochondrial DNA, respectively, and the boundaries of the mitochondrial DNA deletions were sequenced.

RESULTS: Only 3% of the non-alcoholic controls carried a mitochondrial DNA deletion, whereas 24% of all alcoholic patients and 85% of the 13 alcoholic patients with

microvesicular steatosis exhibited either single or multiple 4977, 5385, 5039 and 5556-base pair mitochondrial DNA deletions.

No deletion(s) were observed, however, in 13 patients with microvesicular steatosis due to other causes.

CONCLUSIONS: Diverse mitochondrial DNA rearrangements are observed in alcoholic patients with microvesicular steatosis.

We suggest that alcohol abuse leads to premature oxidative aging of mitochondrial DNA.

Hypothetically, oxidative damage to mitochondrial constituents (DNA, proteins and lipids) may favor microvesicular fat deposition.

PMID: 9252080 [PubMed - indexed for MEDLINE

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Hi Flop:

Thanks for clarifying - it was making me so confused (and my friends and family, too!).

Hi Dizzy:

I'm going to get back on those EFA's. It's funny you posted the link on autism. I've been noticing similarities since reading Jenny McCarthy's book regarding her autistic son.

I take several forms of B1. I began with oral B1 but originally couldn't take it due to my gastroparesis. So I began applying it topically in a form called Authia Cream created by Westlake labs. http://www.ourkidsasd.com/products/1300/lsg It stinks to high heaven and the first 2 weeks of application increased my symptoms but I hung in there and it paid off. If you apply the Authia cream first (inner thigh is best) and then put the transdermal B complex cream http://www.leesilsby.com/bcomplexreg.php over top. It turns the stink into kind of a yeasty smell - like your a loaf of bread!

After the Mito cocktail I have been able to process food and my gastroparesis seems to be improving - so I've added 255mg of oral B1. I also was prescribed B1 shots by my new endo doctor. My boyfriend gives me shots in the bum 2x's/wk. We started with 10mg and are now up to 20mg. The goal is 100mg every day. I'm not going to lie to you - they HURT. The prick of the needle is fine, it's the fluid that hurts.

Thank you for all the links! I have a lot of reading to do.

-WB

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You can definately have both mito and dysautonomia. I'm told I have both. Lack of energy due to mitochondrial dysfunction can cause nerve dysfunction. Are you going to have a muscle biopsy?

Interesting info from Cleveland Clinic:

Myth - A muscle biopsy is the "gold standard" for diagnosis of mitochondrial disease.

Fact - Although the muscle biopsy is a powerful diagnostic tool, it should not be considered a "gold standard." Examination of a biopsy includes microscopic evaluation, enzyme testing, and genetic testing. Although all U.S. labs that offer muscle biopsy meet strict laboratory guidelines, there is no agreed-upon standard approach for enzyme testing. Furthermore, a muscle biopsy with full analysis costs well over $10,000 and poses both surgical and anesthetic risks. In some patients, the diagnosis can be made based on clinical symptoms and a positive blood test (identifying a genetic mutation) or a combination of clinical findings and other non-invasive testing -- in either case, a muscle biopsy is not necessary. Finally, since biopsy results usually do not alter the long-term outcome or treatment considerations, some specialists and patients choose to treat without the need for a muscle biopsy.

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It's funny you posted the link on autism. I've been noticing similarities since reading Jenny McCarthy's book regarding her autistic son.

I didn't realize the similarities until I started healing from all of this. When I came down with CFS in 1990, I was healthy one day and sick as a dog the next so I didn't know what hit me. I started this dietary / holistic intervention on the advice of my GP in July 2005 because I was in pain all of the time from gas, constipation, GERD, gastroparesis, diverticuli, hemeroids, etc. And then in June 2005, I lost 10 lbs in one month due to diarhea. I saw a GI from 2004-5 but he didn't even test me for celiac disease during the EGD. What an idiot !

As my "CFS" symptoms began to fade and I could think once again, I began to research the symptoms that had simply disappeared and the ones I still had. I just love google now ... At this point, I can't begin to express how stupid it is for the medical community to group all of these symptoms together, give us a grim diagnosis, tell us to live with it and forget about trying to fix the patient. :angry:

For example, within days of giving up gluten I no longer had narcolepsy. Only I didn't know it was called narcolepsy. I just knew I would fall asleep all of the sudden and would be this way for days on end.

And I just thought I had a balance problem and heavy legs, I never realized it was called ataxia ... stupid doctors ... and I failed the Rhomberg too. And that's just the beginning ...

The DAN info has been invaluable. Have you heard of Rich Von "something" ? He has been saying for years now that CFS and autism are linked. For those who aren't up on this, CFS and POTS appear to be the same thing ... FYI ... From what I've seen on the web though, many illnesses are related to diet, especially gluten, including MS, etc. Rich has a popular theory called the Glutathione Depletion - Methylation cycle block that he is convinced is the key to getting over CFS. It's something about the detox system .. I can't understand yet so I can't say whether he's right or not but I have seen where Dr. Myhill now agrees with him. From my personal experience, she's been right all along too. If you google his theory though you'll find this. I understand it's derived from Amy Yasko's work.

Over the last 4 years, I've run into parents of autistic kids on the various message boards. What an amazing group of parents ... and you can't beat the detailed info those DAN doctors have provided all of us. Have you read "Healing the 4 A's " by Kenneth Boch ? I really enjoyed Jenny's books. She did a great job of making this terrible subject light hearted.

I can relate so closely with so many of the symptoms of autistic kids, it's been a little scarey. Those poor kids ... I felt horrible 24/7 before changing my diet ... the brain zaps and the constant buzzing were unnerving. And the digestive problems ... wow ... I attribute the lack of eye contact in my life and those with autism as the inability to follow a conversation without getting overwhelmed. I still can't follow the train of thought. Funny thing is that most people have no idea that I'm not getting what they are saying. Just goes to show how well some people really listen to what the other person is saying. :unsure:

I take several forms of B1. I began with oral B1 but originally couldn't take it due to my gastroparesis. So I began applying it topically in a form called Authia Cream created by Westlake labs. http://www.ourkidsasd.com/products/1300/lsg It stinks to high heaven and the first 2 weeks of application increased my symptoms but I hung in there and it paid off. If you apply the Authia cream first (inner thigh is best) and then put the transdermal B complex cream http://www.leesilsby.com/bcomplexreg.php over top. It turns the stink into kind of a yeasty smell - like your a loaf of bread!

After the Mito cocktail I have been able to process food and my gastroparesis seems to be improving - so I've added 255mg of oral B1. I also was prescribed B1 shots by my new endo doctor. My boyfriend gives me shots in the bum 2x's/wk. We started with 10mg and are now up to 20mg. The goal is 100mg every day. I'm not going to lie to you - they HURT. The prick of the needle is fine, it's the fluid that hurts.

Thank you for all the links! I have a lot of reading to do.

-WB

Thanks .. I have some reading to do too. I checked it out quickly and found it's being used by the autism community so it looks good.

The shots sound horrible. I had to take magnesium for awhile too and those hurt ...

BTW. Tons of fresh papaya and a limited diet help me with my gastoparesis everytime. Nothing else has ever done this for me. I'll try the Mito cocktail now though ...

Geesh ... it's late ... good talking with you ... Marcia

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... At this point, I can't begin to express how stupid it is for the medical community to group all of these symptoms together, give us a grim diagnosis, tell us to live with it and forget about trying to fix the patient.

I think in terms of general doctoring you are probably right - particularly in the past - in that because they couldnt explain what was going on, they couldnt really do much. What this general leads to is patients having to take their condition and its treatment into their own hands. Sometimes this works out, other times it can cause more problems than it solves.

POTS is becoming fairly well understood and the amount of research going on right now and in the last few years suggests that they are making up for lost time. I think we will have most of the answers in the next few years, so medicine is trying its hardest.

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Guest tearose

Don't you take CoQ10 for Mito?

I could not afford a Mito specialist and since the treatment is a vitamin cocktail, I decided to get PCP permission to take vitamins. It is not hurting but can't say it has changed a thing.

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Yes - CoQ10 is one of the vitamins listed on the Mayo Cocktail. Good luck! It's helped me a lot.

Yesterday I noticed that my energy was able to replenish itself. By this I mean generally, in the past, when I've 'crashed' I could not recover during the day I crashed. I would have to completely stop doing everything and rest for the remainder of the day, sometimes several days depending on how bad the crash. Yesterday my energy seemed to rollercoaster - it went up and down during the course of the day, which is highly unusual. At the end of the day (11pm) I found I still had energy to burn. Contrary to some postings, I get most of my energy when I wake up and then slowly (or quickly - hehe) lose it during the course of the day. So for me to 'finish strong' is unheard of!

Good luck on the cocktail - would love to know how you go.

-WB

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... At this point, I can't begin to express how stupid it is for the medical community to group all of these symptoms together, give us a grim diagnosis, tell us to live with it and forget about trying to fix the patient.

I think in terms of general doctoring you are probably right - particularly in the past - in that because they couldnt explain what was going on, they couldnt really do much. What this general leads to is patients having to take their condition and its treatment into their own hands. Sometimes this works out, other times it can cause more problems than it solves.

POTS is becoming fairly well understood and the amount of research going on right now and in the last few years suggests that they are making up for lost time. I think we will have most of the answers in the next few years, so medicine is trying its hardest.

Please don't get me wrong. I like my traditional doctors, I just accept their limitations now. If I need surgery, or a procedure or medication (a last resort) or a lab run, I'll go see one of them. But if not, I'll self treat in a safe, cautious way of course.

The problem is that I didn't realize this all those years I was too sick to stand up most of the time. I can't help but be angry. I thought I had this licked but the better I feel the more I realize how wrong all this is. I've lost 19 and 1/2 years so far and my daughter (age 2 when I got sick) lost out on having an AWAKE mother. She's rascally and needed someone 24/7 ... :)

The problem is that traditional medicine is studying the "end results" only and trying to fix that. It just doesn't make any sense to me ... We know that if we put bad gas in our cars, they won't run right and will have all kinds of symptoms. Now an enterprising mechanic would fix this or that and eventually sell you a whole new engine. He's not going to tell you it was bad gas.

Same goes for our bodies. We can't put all kinds of garbage in our bodies via the digestive tract and expect to run well. Our digestive tracts are responsible for providing nutrients to the whole body ... it's what keeps us alive. We've forgotten that ..

Let thy medicine be thy food. Hippocrates said this ... so this info isn't new, just forgotten.

Marcia

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