Testing for Mitochondrial Damage from Statins ??

[twinmom]

I've read alot about possible mitochondrial damage from using statins (former Zocor user). Have been ill for 1-1/2 years, with unrelenting fatigue and muscle aches that come and go still persisting. Does anyone have experience with testing for mitochondrial damage? What tests should be done? None of the docs I've seen thus far (internist, neurologist, rheumatologist) has diagnosed my illness or offered any form of treatment. If diagnosed with mitochondrial damage, what treatments have been advised? Any info would be greatly appreciated.

[peter s]

According to some in the chronic fatigue community, the state of the art test for mitochondrial function is done by a lab in the UK called Acumen. It tests ATP levels, ATP recycling, etc. Google either ATP profile, Acumen, or Dr. John McClaren Howard.

Treatment for mitochondrial dysfunction typically involves supplements such as B vitamins, CoQ10, carnitine, and d-ribose.

[Brian C.]

It was the ATP Profile Test that I wanted to talk about with that doctor at Biolab who gave me the run-around. Hopefully Dr McLaren Howard has found a more worthy laboratory to carry it out.

Brian.

[Brian C.]

Acumen doesn't seem to be up and running yet.

Brian.

[peter s]

Acumen is up and running they just don't have a website, I have had the test done -- for reasons unrelated to statins.

[Brian C.]

Aah, thanks Peter.


Brian.

[gotts1936]

This may be a dunb question, but if there is no cure for mitochondrial damage why pay to have a test? if your legs still hurt like hell after stopping a statin drug you obviously have mitichondrial damage. Correct? I have been in leg pain and discomfort for two and 1/2 years since stopping Lovastatin and I take CoQ-10, L-Carnitine and Alpha Lipoic Acid supplements.
Gotts

[Brian C.]

I'm fortunate that, after 17 years of statins, I am not in pain (though the old "war wound" myalgias sometimes make a surprise but brief reappearance).
It's the lack of energy and stamina with moderate work-rate causing distress that I'm concerned about. I guess I am one of those people who want to know specifically what is behind it all.

Also mitochondria therapy is a developing field and I'm willing to try (almost) anything that may improve my exercise tolerance.

It may prove a waste of time and money or it may not. I'll see how I feel next spring when I start getting out and about again.

Brian.

[harley2ride]

My understanding is that there are numerous types of Mitochondrial damage. Just in Mitochondrial Myopathies, there are different types. Only way mine was found, was through a couple of muscle biopsies, and a good MDA doctor, who was able to review my symptoms, and between my symptoms, and biopsy, was able to determine the type of myopathy that I had. Getting on the right medications and the right doses CAN make a big difference in how you feel.

No you won't be cured, but it can sure make life much more bearable.

For those of you still having pains, have you tried taking 5mg of NADH daily. I didn't think that NADH made much difference, until I tried to quit taking it. It really helps with my mitochondrial myopathy. BIG TIME help.

[Brian C.]

I didn't find NADH made any difference, the aches & pains are kept at bay by 900mg CoQ10 & 8g l-carnitine thankfully.

Brian.

[harley2ride]

Forgot to mention that my MDA doc did say, that each and every person has to try slightly different meds and doses to gain benefits.

[SusieO]

[quote="harley2ride"]Forgot to mention that my MDA doc did say, that each and every person has to try slightly different meds and doses to gain benefits.[/quote]

Harley this is EXACTLY right what your doc says...no two people are made up the same genetically and this is why some of us suffer long term effects while others have no problems taking a statin and yet some have problems while taking it and when they stop they are fine.

Read the latest newsletter from Doc - the article "Statins and Personalized Medicine" By Georgirene D. Vladutiu, Ph.D. sums it all up as it should be. I felt like a weight was lifted off my shoulders when I read this an hour ago. Sure it won't cure me or make me any better, but it darn well solidifies the fact we are not nuts - we do have permanent damage from a statin and that each person should be given meds according to their genetic make up not according to what some drug company feels is a good amount for everyone.

My wellness doctor does just this...the supplements he gives me are individualized for my body not for anyone and everyone. He also does testing with a machine called SpectraVision where it goes down deep in to thousands of my cells and then gives readings of what is wrong and even though the drops of supplements that are given to me are taken off the shelf only I can take the drops. Before the dr. dispenses them to me I put my hand in a special machine with the bottle of drops and it mixes my genetic make up with the bottle of drops.

Also, the amount of each supplement I take changes all the time. I may only need 1 of a certain supplement and then a month or two later I may need more. Our bodies are always changing and that in turn should change what we take to stay healthy.

We sold our home and we are living in an apartment until our new home is finished. This apt has many toxins that our prior home did not have so this last month my supplement need went way up. Next week I will put out glass jars in the main rooms I spend most of my time in...the jars will stay open for 24 hrs - then I will cap them and take them to my wellness dr. He will desensitize me from the toxins so my body can better adapt to the air and I will be able to lower my supplement needs.

Right now I have the nasty crud/croup that is going around and as soon as I get sick my muscle weakness comes back ten-fold from what it normally is. I am unable to take my daily walks and I hurt all over.

Sorry for rambling...but this article today really made me feel good about someone doing research that makes a lot of sense for so many of us!

[Charles Wilson]

I don't jump in much, but the mitochondrial damage issue is very difficult to accept when you believe there has to be a way to turn this around. However, I, like you, have been beating a dead horse trying to find an answer. Speaking of horses, has anyone tried Astaxanthin (Asta-ZAN-thin) for muscle burn and fatigue? I spotted an article where a study was done with horses that had a life threatening disease called equine exertional rhabdomyolysis. The study was done on eight race horses and after only two to three weeks the animals were symptom-free and able to continue training. Now, as I have been having serious difficulty climbing stairs (legs burning bad when I reached the last stair), I thought I would give it a try. In two weeks I was able to climb the stairs without the crippling burn/pain. No, my legs are still rather weak, but the burn was all but gone. With a house with two flights of stairs, this was a big plus. No again, it takes me a long time to climb stairs or even walk.

Astaxanthin is extracted from algae. I am going to try it for a few months to see if there is any improvement to the muscle weakness. I got the product (BioAstin mfg by Nutrex Hawaii) through Vitacost. The Nutrex Hawaii product appears to be a better product than the others listed. Next, I have been taking Provigil for fatigue. It works well for me, but it is not cheap. All this may be wonderful, but I am still having a very hard time accepting the fact that Lipitor has crippled me and nothing can be done to bring back what has been lost. One last comment, I worked with Dr. Graveline on a national study using glyconutrients to help relieve the neuropathy symptoms from statins (the constant burn, tingle and pain) and I saw a very significant improvement. [/quote]

[equestrian]

Charles W., Would you be willing to elaborate on glyconutrients and neuropathy pain? I'd be willing to try anything to reduce pain. So far Cymbalta and Lyrica have helped substantionally but have made me fat, stupid and tired.
Thanks,

Equestrian
Atlanta

[Geebee]

If you are willing to try just about anything ask your doctor to put you on 25mg of Prednisolone for a week.
He will most likely want to taper the dose off for safety afterwards.
For me it was magic from basically living dead to normal in days, I am down to 15 mg daily and am trying supplements to allow me to drop lower as long term use of Prednisolone is not to be taken lightly, it has some major side effects.
At the very least it may remind you what it feels like to be alive.

[Charles Wilson]

Equestrain, the participants in the study were taking a high dose of Advanced Ambrotose, the product used, and the results were very encouraging. Twenty people participated and only two failed to see much response. Normal consumption is one tub a month (5.3 oz) and we were going through over two tubs a month. At $134.00 a tub, it can get expensive. However, I believe one tub, in conjunction with a pain med such as Gabapentin, could work almost as well and the benefits from the glyconutrients would be excellent. I am gradually working down on the Ambrotose dosage to see if this will work for me. I am currently on 3600mg of Gabapentin and two TBS of Ambrotose a day. I will be glad to provide you with any further information.

I was put on prednisolone in 2006 and any benefit was short lived as my burn, tingle and pain returned over a period of a few months. Prednisolone is not a "happy" medicine. I was agitated the entire time I was on it. In defense of the comment about prednisolone, it did work and some people may not have a problem taking it. But, this is not something I would want to take for an extended period of time.

[Geebee]

So far I dont "appear" to have any problems with Prednisolone, I have been on it about 3 months now and have just had test to see how much damage it has cause and they all came back clear plus I have had no weight gain or mood issues.
I am, as of today trying to decrease the dose down to 12.5 mg and then to 10 mg in a week, fingers crossed.

[Charles Wilson]

Geebee, I have been told that if you catch the problem early enough, the treatment can/will work. Apparently I was too far along.

[Geebee]

Looks like I am stuck on a minimum of 15 mg for the near future, woke up this morning with all the usual suspects fully active again
One more bit of bad news was that my cholesterol was back up a bit at 6.5 tri's up to, researching it, it appears that Prednisolone will increase cholesterol in susceptible people.

[harley2ride]

Geebee - Do you have Statin Myopathy, or diagnosed Mitochondrial Myopathy?