We essentially have Mitochondrial Disease

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

We essentially have Mitochondrial Disease

Postby cjbrooksjc » Thu Mar 06, 2008 5:00 pm

This is a very long, but; I feel, IMPORTANT post.

We all know that Statins cause our problems by damaging our mitochondria. As I was chasing some curious anomaly around the net, I ran across this site about children's Mitochondrial Disease

**www.kathleensworld.com/mitochon.html

As I read the text (see below) it became evident that I could filter out much that dealt with children and attribute most the rest to my (our) side effects due to mitochondrial failure. I knew about this (mitochondrial failure) in a sense but had not been able to describe the cause and effect adequately.

The following text is from Kathleen's site. At the end I will provide a link to the United Mitochondrial Disease Foundation where more info can be found. There is also an interesting caveat at the end regarding carnitine.

What is Mitochondrial Disease?

The United Mitochondrial Disease Foundation (linked on this page) offers this analogy to help you understand (and me, too!)

If your power goes out in your home, your food spoils, your heating/air conditioning does not work, and you're left in darkness. You call your local power supplier to report the problem.
The Mitochondria--the part of the cell responsible for energy production--is very much like the power supplier that provides energy to your home. If the mitochondria (power supplier) is defective, your body cannot function as it should. The brain becomes impaired, muscles start to twitch spasmodically and weaken, the heart does not pump correctly, vision becomes impaired and the list can go on. For many children and adults with mitochondrial disease, this is exactly what they experience.

Here's the simplest way to explain what happens. The food we eat gets broken down and assigned in various fashion. The fats and sugars go through processing, and there's quite a bit involved in this. If you get into this stuff more, you'll hear all about the respiratory chain and ATP, which is the end result, or energy. The mitochondria in a cell have to go through five "complexes" to create energy. An error in any of those complexes is bad, but obviously there can be varying degrees of how big the error is, and where it occurs in the energy making process. Mitochondria are responsible for producing most of the energy that's needed for our cells to function. In fact, they provide such an important source of energy that a typical human cell contains hundreds of them. A mitochondrial disease can shut down some or all the mitochondria, cutting off this essential energy supply. Because muscle cells and nerve cells have especially high energy needs, muscular and neurological problems are common features of mitochondrial disease!!


Carnitine plays an important role in cellular energy metabolism! The mitochondria is the "furnace" of the cell. Fatty acids (fuel) must bind with carnitine to enter the mitochondria. Once inside, fatty acids are burned for energy. Carnitine then binds with the toxic waste by-products of metabolism, removing them from the mitochondria. The inner mitochondrial membrane is impermeable to fatty acids. Transport of fatty acids across this membrane can occur only when the fatty acids are attached to carnitine. Toxic waste products resulting from energy production are removed from the mitochondria by binding to carnitine. If they are not removed, toxic build-up occurs. Carnitine is a small molecule found in animal foods. There is little in a strictly vegetarian diet. This transport via the carnitine is the first step in turning fat into energy for driving muscle contraction or nerve cell firing. When carnitine is in short supply production of ATP is slowed. Only the L (levo) form of carnitine is safe for humans; the D form, which does not occur in nature, can be toxic.
Carnitine Deficiency is an often missed diagnosis, and can exist independently of mitochondrial disease. If you have a primary carnitine deficiency, treatment with Carnitor or another reliable replacement will bring about miraculous results. Check these links for more information on what carnitine is, and how it can be replaced in those with deficiencies.

ball Carnitine Defiency Syndromes: NORDFrom the National Organization for Rare Disorders

ballMitochondrial disorders often have a carnitine deficiency along with them. Read up on the replacement supplement Carnitor at Sigma Tau's web page **http://www.sigma-tau.it/na

Tishcon Corp. makes a a very stable Carnitine that was developed and patented by Sigma-Tau. Their products include L-Carnitine combined with Co-enzyme Q10.

Here is the link to the UMDF

**http//www.umdf.org

For me, this was a very rich find. I hope you find it helpful as well.

Best,


Brooks
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Postby cjbrooksjc » Thu Mar 06, 2008 5:09 pm

Near the end of my original note you will see the word 'ball' as a leader in two sentences. I don't know where they came from, and they are not meaningful. And YES, I can imagine the obvious retort... resist the temptation.

Best,

Brooks
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Postby cjbrooksjc » Thu Mar 06, 2008 9:29 pm

The UMDF link didn't work for me. This one did:

**http://www.umdf.org/site/c.dnJEKLNqFoG/b.3041929/
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Postby cjbrooksjc » Thu Mar 06, 2008 10:29 pm

One more link:

**http://www.ncbi.nlm.nih.gov/pubmed/12353945?dopt=Abstract

This is an Nat'l. Inst. of Health paper.

This paper included the following, encouraging observation:

...Strength testing confirmed weakness during statin therapy that reversed during placebo use. Muscle biopsies showed evidence of mitochondrial dysfunction, including abnormally increased lipid stores, fibers that did not stain for cytochrome oxidase activity, and ragged red fibers. These findings reversed in the three patients who had repeated biopsy when they were not receiving statins.

The encouraging part, in case you missed it, is that evidence of mitochondrial damage "reversed in the three patients who had repeated biopsy when they were not receiving statins."

If you 'Google':

Mitochondrial Damage + Statins

You will be off on a journey of discovery.

Best,

Brooks
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Postby Brian C. » Fri Mar 07, 2008 2:30 am

Good post Brooks. Everyone is now aware that statins deplete one essential carrier in the mitochondrial respiratory/electron transport train, ubiquinone (CoQ10) but few are aware that a second vital component is also depleted, heme a. This is essential for oxygen uptake and its deficiency produces EXACTLY the same symptoms as carbon monoxide poisoning. No wonder it takes so much effort to drag our carcases around.

By the way, another compound that produces the same effect in the mitochondria is potassium cyanide!

We have indeed been quite effectively and surreptitiously poisoned, caused by a lethal combination of ignorance and greed.

Brian
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Postby cjbrooksjc » Fri Mar 07, 2008 11:25 am

Brian: Yes, the phrase 'did not stain for cytochrome oxidase activity' refers to mitochondrial failure to move solutes from one side of a membrane to the other; the necessary process to provide waste removal and generate cellular energy (ATP) or, to put it another way, the mitochondria were essentially non functional.

Finally, I am firmly, unshakably convinced that potassium cyanide is a sure cure for old age and ANY lingering illness.

Brooks
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statin drugs

Postby gotts1936 » Fri Mar 07, 2008 1:43 pm

Brooks, I agree, your potassium cyanide cure for old age and lingering illness works, but, at 71 years old, I think I will stay with a good cigar and a six pack of beer. Also, I might add, I have eaten, at least , 1/2 pound of raw hamburg a week since I was twelve years old, but that is another story and may be for a different audience.
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Postby cjbrooksjc » Fri Mar 07, 2008 2:34 pm

gotts: The beer and GOOD cigars I can agree with. The raw hamburger. ahhh..., not so much. I prefer a rare porterhouse steak.

Regards,

Brooks
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Postby gotts1936 » Fri Mar 07, 2008 2:57 pm

Brooks, I agree it would be very difficult to order raw hamburg over a rare porterhouse steak, but it appears you have never eaten a german rye bread "good" raw ground steak sandwich with german mustard, minced green peppers and onions. I have been eating them since I was very young and until I was put on a statin drug at 70 years old was healthy as a horse. Quick question, should anyone be as healthy as a horse?
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Postby cjbrooksjc » Fri Mar 07, 2008 3:35 pm

I thought I would copy you on some correspondence between me and the UMDF (their response)

*********************************************************
Subject: RE: Statin - induced Mitochondrial Disease

Dear John,

Thank you for contacting the UMDF and for your interesting question. I am sorry you are having mitochondrial issues as a result of statins. As you may be aware, we do not do research ourselves. However, we do fund researchers at independent institutions/universities around the world. The projects we fund are selected through a rigorous review process similar to that of the NIH. So far, we have not had any researchers whose statin-related proposals made it to the funding stage, and I’m not sure we’ve even had applications regarding that. However, if we ever do, those applications would be reviewed and considered just as thoroughly as any other.

Having said that, I can tell you that one of our past grant recipients, Dr. Vamsi Mootha, is currently doing some major statin-related research and he has been in the news quite a bit lately. Here is one website about that and also a link to his lab.

**http://www.eurekalert.org/pub_releases/2008-02/hms-nct022008.php and **http://mootha.med.harvard.edu/

I hope this is helpful.

Sincerely,

Jean Bassett
Grants Coordinator &
Membership Services
United Mitochondrial Disease Foundation


Some of the link info in redundant , but there are embedded links there as well.

**** Gotts: I prefer German rye, Limburger, sweet onion and mayo. My mother's maiden name was Nieuenschwander, and I know precisely what you're talking about. Oh, and horses die before they reach 30. :D
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Postby Brian C. » Sat Mar 08, 2008 2:45 am

The military take mitochondrial health very seriously and are seeking ways to enhance mitochondrial function to provide a crucial edge in combat. We can expect much vital information to be classified but this article gives some pointers :

*http://blog.wired.com/defense/2007/03/supercharging_s.html

Ketonic diet, green tea extract and Vitamin B complex.


Brian.
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Postby cjbrooksjc » Mon Mar 10, 2008 3:02 pm

Here is another v. interesting link re: Mitochondria. Although the primary focus of the study is CFS (Chronic Fatigue), many of us were thought to have CFS at one time or another. Anything having to do with mito damage and recovery seems important to me, and this site has something to say about both.

**http://www.drmyhill.co.uk/article.cfm?id=381

Brooks
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Postby cjbrooksjc » Mon Mar 10, 2008 6:21 pm

And now for a bit of good news! You will have read that AMP (which is what is left after ATP is exhausted for cellular fuel) cannot be recycled. Actually, AMP can be recycled, but it happens very slowly. For practical purposes for patients who are very fatigued, this recycling is so slow that it is clinically insignificant. Interestingly, the enzyme which facilitates this recycling ("cyclic AMP") is activated by CAFFEINE! So the perfect pick-me-up for Mito damaged sufferers could be a real black organic coffee with a teaspoon of D-ribose!

Of course, to boost your cellular energy combine CoQ10, L-Carnitine, and D-Ribose. But there is another essential element - magnesium. If you think of glucose (which is converted to D-Ribose) and short chain fatty acids as the fuel of the mito engine - acetyl L-carnitine and Co-enzyme Q10 are the oil and magnesium is the spark plug!

Brooks
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Postby cjbrooksjc » Tue Mar 11, 2008 6:38 pm

If you have time and the interest, please link to Chris Gupta’s papers on Statin damage. They offer a wealth of information in easily readable language. The 1st link is below, and that link has linked pointers to a variety of useful, pertinent information.

**http://www.newmediaexplorer.org/chris/2007/06/04/management_of_statin_damage.htm

Remove the ** before you link.

Below are a few lines to whet your appetite:

..."Statins could initiate and/or accelerate malignant cell growth by a) blocking the production of Coenzyme Q10, which has been shown to have anti-cancer effects; b) stimulating the growth of new blood vessels that malignancies require to promote their propagation; c) decreasing the cytotoxicity of natural killer cells; d) blocking the production of squalene, an intermediate cholesterol metabolite with anti-cancer activities in animal studies and currently used as adjunctive therapy in treating cancer; e) reducing the production of DHEA, which has been shown to have anticancer and immune stimulating effects in experimental studies."...

***
A Danish study reports that a small percentage of people who took statin drugs for several years to lower cholesterol developed a type of nerve damage called polyneuropathy.

Polyneuropathy is characterized by tingling, numbness and burning pain as well as decreased sensitivity to temperature or pain (who was asking about this in particular?). When a person suffers nerve damage, a doctor is supposed to look for a cause, such as diabetes, lack of vitamin B12, Lyme disease, kidney disease, thyroid disease or alcohol abuse. People who had taken statins and developed polyneuropathies were checked for known causes of nerve damage. Researchers showed that people taking statins were 4 to 14 times more likely to develop polyneuropathy than those who did not take statins. Statins include Lescol, Lipitor, Mevacor, and Pravachol. (**text deleted**) Check with your doctor about any side effects from your medications.

***

Here’s a sampling of the papers you may peruse. They potentially answer many of the personal questions posed by members of the forum:


Statins & Lowering Cholesterol A Double Whammy For CHF

Statins and Vitamin D Deficiency - Another Blow

Muscle Side Effects Of Statins

Statins May Cause Nerve Damage

Statins And Our Immune System

STATIN DRUGS Side Effects

Statin Drugs & Breast Cancer

Statin Drugs & Memory Loss

Statins and Parkinson's


***

These papers include pro-statin as well as anti-statin perspectives, but valuable information can be found is even the most absurd dialog. I purposefully removed a sentence in the last text entry that lauded Statins ability to prevent heart attacks.

Brooks
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Statin Fog

Postby epfleger » Tue Mar 18, 2008 12:40 pm

Brooks, ADEC or Biologist:

I read these threads re: mitochondrial damage. I have been off lipitor (10 mg) now for about 7 weeks and a I have suffered with persistent brain fog and all the muscle issues everyone else seems to have. I was on this poison for about 7 months. I note that my muscle issues have largly diminshed since going on aggressive coQ10/ALA/ALC therepy. However, brain fog still plagues me. I had a brain MRI that showed nothing unusual, and particulalry did not show any mitochondrial damage or damage to my glial cells.

So, here's my questions: given that liptor is fat soluble and readily crosses the BBB, would you suspect that my brain fog may eventually reduce as this poison leaches out of my brain fat stores? How long might such a process take?

In case you have no idea who I am, I have posted here once, and have been using this board to help my recovery. I noticed that the three of yopu have made huge contributions to this site and have helped me and countless others tremendously. So, I thought I might run these questions by you three.

Incidentally, my neurolgist indicated that, yes, eventually the lipitor would be flushed from my brain and that likely the brain fog would be significantely reduced or eliminated.

I look forward to your response.

Later

Ed
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Postby Darrell » Tue Mar 18, 2008 1:05 pm

"...MRI that showed nothing unusual, and particulalry did not show any mitochondrial damage"
I don't think an MRI can find such damage. Mitochondria are tiny organelles within each cell. That would be sort of like looking for a bacteria with binoculars.
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statin drugs

Postby gotts1936 » Tue Mar 18, 2008 2:29 pm

Darrell, you are right. This nation is being destroyed by drug companies who must be brought before the world court for criminal destruction of the worlds people. Jail, Jail, Jail for all of them.
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Postby cjbrooksjc » Tue Mar 18, 2008 5:03 pm

Ed: I'll try to answer the most urgent question first: HOW LONG. I was on Lipitor early on and then Zocor, but I still had real difficulties with memory, thought cohesion, and concentration. I still have some days that are disappointing, but after 14 months on the supplements, I am more alert. I still have problems with simple words on occasion. This AM I was reading and came across the term I.C.U. out of context, and couldn't, for the life of me, remember what it meant.

The one thing that seemed to make a difference for me was ANOTHER supplement ADEC recommended - Vinpocetine; it's a vasodilator and that seems to help me. I would guess that it took about two months after I began the Vinpocetine before I began to feel mentally competent, SO... my improvement COULD be attributed to recovery over time. I still plan to keep taking the Vinpocetine.

Regards,

Brooks
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Postby Biologist » Wed Mar 19, 2008 1:38 pm

Ed,

Check out this thead:

http://www.spacedoc.net/board/viewtopic.php?p=2960#2960

Brooks, wonder if Vinpocetine might be a good idea for those suffering from sleep apnea? If you get a chance, feel free to suggest the idea in that recent thread on sleep apnea. (I may never get around to it -- too much to do these days.) I believe it has helped me but ran out (and just reordered last night) where I was planning to give it a good test over a few weeks. I get stopped up at night (nasal congestion) and that effects my sleep in much the same way by cutting oxygen supply. I have a hunch it is going to be a winner for improving sleep oxygenation to the brain (while maybe not doing much for interrupted deep sleep cycles).

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Postby Brian C. » Wed Mar 19, 2008 1:53 pm

I find Breathe Right strips a great help at night. I also take a swig of Robitussin last thing and first thing in the morning to clear my throat.
I suffer from nasal congestion but not apnoea though.

Brian.
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