Lipid Replacement Therapy For Mitochondria Repair?

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Lipid Replacement Therapy For Mitochondria Repair?

Postby epfleger » Sun Apr 20, 2008 8:29 am

Hi All:

I'm wondering if anyone has investigated and/or tried lipid replacement therapy for our mitochondria disease that we all seem to share. There is a fair amount of research out there on this subject. For example, please check out the following link:

*http://www.immed.org/publications/Nicolson_ElllithorpeJCFS_copy.pdf

I must admit, some of the research that you will come across if you search "mitochondria repair supplements" is pretty depressing. There appears to be no cure for mitochondria disorders and it is degenerative.

Just curious if any of you have gone down this path.

Ed
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Postby cjbrooksjc » Sun Apr 20, 2008 1:00 pm

epfleger: Based on what I have read the problem we have; it seems, is called 'mitochondrial myopathy; not 'mitochondrial disease'. MD is usually degenerative and often uncureable. while MM is shown to be recoverable to varying degrees. I haven't looked at your recommended link yet, but I wanted to share what I have read with this simple statement and the following links.


Here's a good link about mitochondria:

**http://ouroboros.wordpress.com/2007/12/14/mitochondria-on-the-fritz-justreplace-them/#comment-45575

**********************************

Here' s another informative link:

**http://www.cytochemistry.net/Cell-biology/mitoch2.htm

Here's a small excerpt from the above (2nd) link

Can damaged mitochondrial DNA be repaired?

* Current studies say yes.
* Meeusen, S, Tieu, Q, Wong E, Weiss, E, Schieltz, D, Yates, JR, and Nunnari, J. Mgm101p is a novel component of the mitochonrial nucleoid that binds DNA and is required for the repair of oxidatively damaged mitochondrial DNA. J Cell Biol 145: 291-304 (1999)
* Mgm stands for "mitochondrial genome maintenance". It was discovered in yeast cells while searching for mutants that caused a temperature sensitive loss of mitochondrial DNA.
* Fused Mgm101 to green fluorescent protein and found that it was localized to the punctate "nucleoid" structures. Localization overlapped with that of DNA detection systems.
* After protein screening found the Mgm101, they studied how its loss affected respiratory competence. Clearly the protein was needed for function, but they do not know exactly what its role is at this point.
* Looked at the COOH terminal region and saw that it was highly basic. That suggested that the Mgm101p might have the ability to bind DNA. Compared its binding to DNA cellulose columns (in high salt conditions) with another known DNA binding protein and confirmed relatively high affinity binding by both proteins.

****************************************

Best,

Brooks

Hopefully, we can all look forward to some sort of improvement in our own mitochondria over time.

Best,

Brooks
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Postby epfleger » Sun Apr 20, 2008 5:18 pm

Awesome Brooks. Thanks! First off, I do indeed hope what we have is mitochondria myopathy (as crazy as THAT sounds). The outlook appears much better!

All the best.

Ed
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Postby cjbrooksjc » Sun Apr 20, 2008 9:05 pm

I totally agree, Ed!

Best,


Brooks
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Postby harley2ride » Mon Apr 21, 2008 2:36 pm

I'm a bit confused about how the terminology of Mitochondrial Myopathy is being used in context here. I've had multiple specialists diagnose me with Mitochondrial Myopathy, and was told that Mitochondrial Myopathy, IS Muscular Distrophy.. And it most definately is NOT a good thing... I am currently under the care of the MDA... So am I confused here, or what? :)
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Postby cjbrooksjc » Mon Apr 21, 2008 3:17 pm

Harley: What i know I've read. My information does not come from a physician; I don't trust their perspective. Here's a link that speaks to MM in a broader form, but the condition is not limited to MD and is not uniformly severe.

**http://www.mda.org/publications/mitochondrial_myopathies.html

I am hopeful that, based on what I've read, that the form of MM that is statin induced is at least partially recoverable.

Best,

Brooks
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Postby harley2ride » Mon Apr 21, 2008 3:55 pm

Brooks..
Part of the problem here, is that mine WAS statin induced.. According to my MDA doc, there are a lot of people out there (more than 1 in 100), born with genetic defects (like a switch which is 1/2 on 1/2 off), and maybe not noticable. The statin flips the switch the rest of the way (in a big way), and that is why so many people with statin injuries have symptoms of so many different diseases (MS, MD, etc..). What my doc tells me, is that my Mitochondrial Myopathy (Muscular Distrophy), isn't really any different than someone born with muscular distrophy, except that mine may have never triggered, had it not been for the statin. There is no cure.. One can only ease and/or abate the symptoms, and some peoples disease will progress more rapidly than others.

Statin Myopathy, is similar to Mitochondrial Myopathy, but is not the same.
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Postby cjbrooksjc » Tue Apr 22, 2008 12:45 pm

OK. You got my attention. What are the specifics for the testing you had done?

Best,
Brooks
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Postby gotts1936 » Tue Apr 22, 2008 2:42 pm

Harley2ride and Brooks, The question I have is there anyone on this website who has attained normalcy after statin drug problems?
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Postby harley2ride » Wed Apr 23, 2008 2:57 pm

I've had multiple EMG's, two muscle biopsy's, seen Dr. Phillips at Scripps Memorial and had an Oxygen exchange test, along with him reviewing all my other test results, been to Salt Lake University Hospital twice to see Dr. Singleton/Robinson (who is supposed to be a renouned Neurologist), and my doc with the MDA here (Dr. Friedman), muscle biopsies were reviewed by Salt Lake, and by Mayo Clinic...
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Postby cjbrooksjc » Wed Apr 23, 2008 3:16 pm

Sounds like quite a saga, sorry. Hopefully we are not all impacted to the same degree. Also, today is not a good day for me (my neck is killing me), and I have to stay positive about the possibility of improvement. I'll continue to research. Thanks for your reply.

Best,

Brooks
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Postby gotts1936 » Thu Apr 24, 2008 9:29 am

Harley2ride, sounds like you taken all the tests possible. I thought about having my GP recommend a neurologist, but after reading your post I said to myself, what's the point? I do not believe there is a cure for Musclar Distrophy. Am I wrong? Will there be a cure in the future?
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Postby gotts1936 » Thu Apr 24, 2008 9:35 am

Harley2ride, sorry, about the " is there a cure? " question. You already said there is no cure.

gotts
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Postby harley2ride » Tue Apr 29, 2008 3:20 pm

No problem, Gotts. Heck, keep asking.. Maybe someday, somebody will have a good, positive answer... :) Sorry about your neck pain Brooks.. I know the feeling. Somedays it kills me to do the crossword puzzle, and it only takes me about 20 minutes. Then my neck will hurt for the rest of the day. I have to be so careful about everything...
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Postby cjbrooksjc » Tue Apr 29, 2008 10:53 pm

Thanks, Harley. Odd, my neck (in the rear) is the only muscle group that is always tender to the touch. I try to massage it to lessen the pain, but it hurts like the dickens to do that, and it doesn't seem to help. AND I am also a crossworder - sometimes I just can't finish. Really Pi$$e$ me off when I let it get under my skin.

Best,

Brooks
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Postby carbuffmom » Wed Apr 30, 2008 7:43 am

Hi Guys:

This has really helped me with my neck problems. I use Bio-Freeze roll-on on my neck before bed and sleep on one of those contour pillows. You can use it laying on your back or on your side. It takes a little getting used to but it has helped me a lot. Maybe it willl help you too.

Deb
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Postby cjbrooksjc » Wed Apr 30, 2008 10:23 am

Thanks, Deb. I actually have some BioFreeze and will try it tonight.

Brooks
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