Permanent Muscle Damage

[gotts1936]

I believe that once the statin drug has induced a mitochondial DNA mutation to form, no supplements will correct the problem. After, three years+ of pain and using many supplements nothing , todate, has corrected the mtDNA mutation.
Once your body developes a mutation nothing can restore that mutation to its former normal condition. If anyone on this website knows of a solution or statin drug caused mutation correction, please let me know. I hurt like hell!
gotts

[David Staup]

gotts,

there is currently no cure for mitochondrial mutations I am sorry to say.
I've looked into this many times and posted on the subject before.

there is some hope for the future.. see this study and many others:

*http://www.ncbi.nlm.nih.gov/pubmed/15384945

as I've stated before your best bet for help is from the mito groups who have much more info and experience on the subject,;

*http://www.mitoaction.org/

*http://www.mda.org/disease/mito.html

*http://www.mitoresearch.org/diseases.html


*http://health.groups.yahoo.com/group/mitoldies/messages

I wish I had more but I'm afraid this is it, we're stuck with the problem and most in healthcare refuse to accept that statins even do this.

David

[schatzi]

Gotts;

Since Tuesday of last week, I have been taking one (1) Tbsp of Apple Cider Vinegar 3 times daily, in a 8oz glass of pure water, followed by one (1) Tsp of raw organic honey, before a meal. For the first time in many years I have no pain in my hands , wrist, fingers, elbows, knees, toes. The only pain left is my left ankle and I believe this is due to a large varicose vein (DVT) in my lower left leg.

What amazed me most is NO pain, not even a little. I am sure hoping it is the ACV and not just a fluke. It's worth a try. I felt improvement after a couple of days.

Apple Cider Vinegar is inexpensive, about $16 for a gallon. It has to be the cloudy looking type, with the so called "Mother" in it. It is available in most health food stores, like GNC. As far as raw honey, it's best when produced in the area where you live.

You can also order it direct from *http://www.bragg.com lots of info posted on their website.

Best Wishes;

Schatzi

[gotts1936]

schatzi,
Thanks for your response. I will buy some ACV and honey today.

gotts

[LindaJ]

schatzi,

I too will try the honey and apple cider vinegar.

thanks,
lindaj

[David Staup]

Gotts,

see the thread on adrenal suppliments I think it may apply to your muscle problems.

David

[gotts1936]

David,
I went to *www.mitoaction.org and was very unhappy with the results. Everywhere, I went this website was asking for a donation. Finally, I clicked on " Drug toxicity & mitochondria ".

This was an article by a Dr. James Dykens , who works for Pfizer drug company and than the article says Dr Dykens makes it clear that the opinions expressed here are his alone, not those of Pfizer. Oh, really!

Some of his comments follow:

" Today's standard methods of drug testing cannot demostrate such damage ".

" Idiosyncratic drug toxicity will also be effected by age, genetics, function of organ history, and others factors ".

Summary by Joanne Turco, RN.

It is Dr. Dyken's mission to get the FDA to test all drugs for mitochondrial dysfunction. ( Sure blame it on the FDA ).

Only time will tell ( some of us don't have time ). There is much work still to be done.

My notes:

Unfortunately, when the medical profession knows nothing it blames the patients pain and discomfort on age, obesity, smoking, alcohol , red meat and fat.

The medical profession much stop using patients as quinea pigs for the drug companies and stop keeping their fingers crossed that their patients will not develope a side effect or a complication that may kill them.

I would have a lot more respect for Dr. Dykens if he had demanded that no drugs should be prescribed until the patient has been tested for toxicity to said drug.

gotts

[David Staup]

Gotts,

You seem to think there is a single point to searching for YOUR answers. let me be a bit more specific. mitochondrial disorders are a spectrum of cause and effect and unfortunately in our case where it's possibly caused by multiple mutations the picture is even more confusing. look and the multiple deseases cited on this page and read the symptoms of each:

*http://mda.org/disease/

most have many of the symptoms we suffer and within the group are all the symptoms we suffer... then if you want to be diagnosed and learn the truth as it pertains to your specific symptom set find a doctor familiar with mito here:

*http://mda.org/locate/

I gave you links to three organizations based on your belief that mitochondrial mutations are at the root of your problems (which I believe also) these groups are at the TOP when it comes to mito but they are not specifically geared to adults nor statin victims but they are the ONLY place to learn more about mito mutation disorders and to find doctors who KNOW how to diagnose and treat using BEST KNOWN METHODS...If your waiting for someone who knows about statin induced mito, who believes in statin induced mito it's going to be in another life (for both of us)...

David

[gotts1936]

David,
Thanks for your response. Sorry, if I sounded crotchty,but I have been researching statin damage for over 3 1/2 years now and I probably know more than most of you and almost as much as a few of you.
Being 72 years old and retired I have spent about 3 to 4 hrs everyday for the past 3 1/2 years researching statins damage as it relates to neuropathy, myopathy, etc., etc, etc.
Also, I have reviewed most of the websites that have been recommended to us on this website. I hope I do not sound like I am tooting my own horn, but after so much research you become disillusioned with websites, doctors, research labs, neurological research centers and , yes, some members on this website that appear to have ulterior motivations.

I know I sound paranoid, but there is a lot of disinformation out there and trying to weed through it, is a pain.

I hope no one takes my comments personally!

gotts

[David Staup]

Gotts,
I'm as guilty of being crotchty as anyone here. I've been suffering from self induced pain from overdoing it then yesterday threw my back out and I let that frustration show in my responce to you ...I'm sorry

Have you seen my post on adrenal gland stimulation and ronni's responce I think it is worth consideration and hope that it will provide some help for us

David

[gotts1936]

David,
You mentioned sometimes you suffer from self induced pain from overdoing it. Some of us have to be careful because the statin drug has damaged our mitochondrial pathway and our muscles can not be repaired or have difficulties being repaired due to any muscle damage our activities may have cause.
as for me, after 8 months on Lovastatin my leg muscles atrophied and even now, after 3 1/2 years, my leg muscles hurt when I sit down, get up or put any stress on them like lifting my legs to get in the tub to take a shower.
I have not answered all your questions. I will shortly.
If Texas becomes a Republic again, I'm moving to Texas.
gotts

[David Staup]

Gotts,

Posted: Mon Sep 14, 2009 1:38 pm Post subject: statin drugs

David,
You mentioned sometimes you suffer from self induced pain from overdoing it. Some of us have to be careful because the statin drug has damaged our mitochondrial pathway and our muscles can not be repaired or have difficulties being repaired due to any muscle damage our activities may have cause.

oh, I'm aware of this...I must limit myself to 10-15 minutes of activity 3 or 4 times per day and must recline fully supported the rest of the time to recover. I'm 6'4" and weigh 155 lbs or so and have been down to 125 from loosing muscle several times in the 10 years of my statinized life. my neck and upper back muscles always hurt due to spending too much time at the computer. my hands and forearms always hurt for the same reason. Driving more than 20-30 miles tears up my right calf and my left thigh...when I over do it my urine turns dark and cloudy from muscle debris and blood, my kidneys start to malfunction and hurt if I don't supply extra electrolytes. usually have to endure pain from all the getting up and sitting down at church. when I say over doing it ...it is not much doing at all
in this most recent case it was from vacuuming, dusting and spredding grass seed with a hand spredder over a three day period in more than the normal 3 or 4 15 minute periods..I know exactly what you are going through in principle cause I've lived it for 10 years now...it's only a matter of degree that cannot be judged ...its all so subjuctive what's a 6,7,8, or higher on your pain scale doesn't mean much to me only because I don't know how to compair it to my pain scale...

Gotts you're welcome to come to Texas any time but know that it gets HOT here

David

[gotts1936]

David,
Gee, it appears statin drugs have impacted your quality of life a hell of a lot more than me! I can mow the lawn and do some landscaping for about 1 1/2 hrs before I have to stop due to pain increase. And, I agree with you, what the hell is a pain scale? My doctor alway ask me, "what is your pain level on a scale of 1 to 10 ". I always say 3 to 4, but how can anyone tell?
My 3 1/2 years in pain pales compared to your 10 years. Also, from the waist up I have no problems. It is just my leg muscles. Oops, I forgot my eyes tear for no reason at all.
I am a little familar with Texas. I went to San Antonio for USAF training and. in the early 1980's, I worked in Brownsville for about two years as a building inspector.

gotts

P.S. my research for adrenal gland supplements is limited. I will review what I have and get back to you.

[damaged]

Gotts:
My 3 1/2 years in pain pales compared to your 10 years. Also, from the waist up I have no problems. It is just my leg muscles.

.......

Tell me, does this strike you as odd?
I've often wondered why my upper body appears to have suffered no damage.
During the last year of my employment as a carpenter, I was doing work that involved repetitive squatting and ladder work. At that time, I could feel my muscles tearing as I worked. I assume that had I been doing work that stressed my upper body, I would have damaged those muscles as well.

It would seem that there should be at least some evidence of muscle damage in my upper body.

Recently I took an eight pound weight and tried doing repetitions with it. Not long ago, I could have done 15 reps with 40 lbs with no effort. Now, after 8-10 reps with eight lbs my arm muscles feel exactly as if I was using 10x the weight. So I'm not sure what's going on here.

I'm sure that many (especially a doctor) reading your post would write it off to your age.
But I too have to recover for 2 days from simply going to church – primarily from walking across the parking lot ( and I'm only 54). This is pathetic considering that I was building houses as little as 10 years ago.

I'm struggling with a decision to take yet another test recommended by a neurologist that I saw last week. He wants to test the nerves in my legs for damage. I've had the test done twice by other docs....but they all say that they don't trust the results and want to repeat the test.
He did promise to look into statin induced damage. He refused an offer of links saying he had his own resources.

I appreciate your honesty, and understand your frustration.

I'm glad you posted what you did.

And, I'm thankful for your efforts researching possible treatment.

I received a newsletter today from spacedoc that expressed the same conclusion.

Perhaps it will help with my failure to accept what appears to be a hopeless situation.

mike

[David Staup]

Mike,

I would personally decline the offer from any doctor who would refuse to a least look at your info.

I would suggest that you use the MDA doctor locator and find a doctor near you who is familiar with mitochondrial disorders...most of them are neurologists and should be better able to determine the truth from your tests...in fact they may just want to see the two tests you've already had

*http://mda.org/locate/

David

[gotts1936]

Damaged, I agree with David, if you have already had two electromyography tests with no conclusive results than I would not take another one. After, about three years in pain, I decided to go to see a neurologist in town, the only one in town, I almost walked out of his office when he refused to discuss the possibility of statin damage, I wanted to see the results of an electromyography and an MRI. So, I bite my tongue. This neurologist is so rigid in his practice these are some of is comments: " Your GP thinks you have myopathy possibly caused by Lovastatin. I disagree! " and " you will have a electromyography test, an MRI and a muscle biopsy. If we do not find any problems we will prescribe a pain medication for you ".
More to come.

gotts

[gotts1936]

I'm back! Sorry, but I had to leave. Anyways, The doctor who performed the electromyography said that test had abnormal results which should mean she can not provide a report, but much to my surprise she wrote the following: " The patient drinks alcohol (beer), this could be a cause of his leg muscle pain. Also, there is definitely no evidence of myopathy".

Now, if the test had abnormal results how in the hell can she make the statement that there is no evidence of myopathy? Maybe I am missing something, but it sure sound strange. And, she said that her test has her leaning toward spinal stenosis. If you remember the neurologist said, first an electromyography and than a MRI. My neurologist said, if she is leaning toward spinal stenosis we had better get an MRI. Is it possible these two doctors are in colusion with each other?

I have had the MRI, but I am not due to see the neurologist until Oct. 10th. I will update.

gotts

[gotts1936]

Damaged, I might add that within 3 weeks of taking Lovastatin my legs started to hurt like hell. Up until that time I was pain free. Unfortunately, my GP did not tell me, maybe your having a statin side effect for 8 months later, and by than the muscle damage was unrepairable.
gotts

[damaged]

The first neurologist that I saw said that I had “mildâ€Â

[uncle2blade]

damaged, I have had my COQ10 done at a lab in Cleveland, Lab Corp. It is a simple blood test. Not all labs preform this test though. Craig