Permanent Muscle Damage

[damaged]

uncle2blade:
damaged, I have had my COQ10 done at a lab in Cleveland, Lab Corp. <snip>

........

Thank you.
I'll call a local lab and ask about it. I can easily get a test ordered.
Should my CoQ10 levels be low, this will settle it for me.

At this point, I'm not really concerned with the initial cause of my pain. I'm coming to the conclusion that it could be the statins alone....but I've also read that atenelol can deplete CoQ10 levels.

While in the thick of things, I also agreed to try a few of the psychotropic drugs being prescribed for pain....cymbalta,etc, as well as Lyrica, Tramadol.

I've come to believe that prescribing these drugs is truly the "dark arts" because there's no doubt that they have no idea what they're doing.
And who knows how these drugs may have interacted. But at the time, I was panicking because I had to feed my family.
I was willing to try anything.

I'm already wondering how I'll react if my CoQ10 levels are normal.
It would seem that if the levels were normal - in theory, I should be able to rebuild muscle. And it would indicate that that there was no altering of any DNA that's inhibiting the manufacture of CoQ10....right?

This info on "20 minutes" is very interesting.

heh heh....I used to be a very "steady" individual. But, beside what this has done to my legs, I'm afraid that I'm morphing into one that vacillates multiple times per day. I'm continually announcing to my wife that I've resolved to accept matters...only to announce 2 hours later that I've decided to "look into" something else.
I guess that I can only pray for her continued patience.

Thanks for everyone's input,
mike

[gotts1936]

Mike,
Your, sept.17, response is very interesting and I believe you are driven, like most of us, to find empirical evidence of statin related damage because we are consistantly being told, it ain't so!

gotts

[uncle2blade]

Mike, If you find a lab that does CoQ 10 test you'll have to find a Dr. to prescribe it. I also take attenlol. CoQ10 is a enzyme your body naturally produces. As we get older our system produces less and less of this natural substance. My Q10 levels are in the normal range, however I supplement, with CoQ10. I have had many of the same side effects you are experiencing, don't despair, We all have different recovery time, but I can tell you that after almost three years I live a pretty normal life, without much pain.

After I concluded that statins were the cause of my problems, I tried not to focus on blame and focused on my recovery. I read everything on this forum. Old posts new posts, I looked for others who had the same problems I had and followed their advice. I would click on members profiles and read all their posts. There is a lot of information here if we just need to look.

Best of luck to you, Craig

[harley2ride]

I can relate to the frustration with the doctors and the emg results. I had one locally from a respected neurologist where it was said that I had neurologic and myopathic muscle damage. A few months later, a neurologist respected in the region, tried to first tell me that emg's can be interpreted differently. He at first tried to say that he could not find anything conclusive. He later (after reviewing some muscle biopsy results), stated that he was certain that I had mitochondrial disease, and referred me to the mda.

One thing you might want to try to help with the pain, is NADH. I take 5mg daily, and I really notice more pain, if I stop taking them. It took quite a few days to notice the difference. I also take a supplement called mitoch power which has coq10, l-carnatine, and more, and lyrica. Can't say that I'm pain free by any means, but if I stop taking any of those things, I get notably worse. Mda doc says that each person is different, and that each person needs to try different meds and doses, to determine what works best for them. I had to experiment for 5 yrs, before I found what worked for me!
I truly hope you find what works for you.

[damaged]

uncle2blade
“CoQ 10 test you'll have to find a Dr. to prescribe it.â€Â

[valgators]

Hi Mike,

I'm not replying to your direct question, but I wanted to make a suggestion.

Have you ever had your vitamin D level checked? It is a very recognized fact that statins destroy vitamin D supplies; and believe me, if you have Vitamin D deficiency in addition to other statin damage, the pain is only worse. If you are not in the sun enough to keep your levels up, that could cause problems. A simple blood test (25 hydroxy Vitamin D) will establish your level. It's usually suggested a score of 50-80 is best. If it's low like mine (19) then the pain is much more pervasive. It also takes several months to get the levels up with prescription dosage. But I would ask your doctor for this simple test and at least you can rule that out if your levels are within normal range.

Good luck. Valgators

[David Staup]

Damaged,

I came across the following in another forum- it's an old post and I'm trying to find the poster who I think is an MD. the post explained to me the why of what I found by observation ie that I could minumize damage and pain by limiting any physical activity to 3 or 4 10 to 15 minute sessions per day. I begin and end the most important passage with emoticons.

"The other possibility is statin damage. There are many mitochondrial experts who have become quite interested in statins, due to all the patients that are finding their way to them. Many of the mitochondrial damages seen commonly in statin patients are, under circumstances of normal congenital causes, only seen by pediatricians - never by doctors treating adults.Which, perhaps, is one reason so few doctors recognize statin damage early enough to prevent disabling damage.
A rheumatologist may also be in order (but the neuromuscular specialist would be the first stop). The high CPK, if associated with mitochondrial damage from the statins, can be indicative of myopathy.


If you exert yourself beyond the ~20 minutes of ATP stored in the cell, the mitochondrial damage will prevent the oxygen exchange that would normally replenish the muscle cell with energy. The next step is cellular damage, and even cellular death - apoptosis. The body's reaction to apoptosis is to produce a great deal of uric acid, which halts the cell death, but then the crystals form and gout develops. Gout, or inflammation in the joints, is a form of arthritis, which is what rheumatologists address


Be very cautious. When the exertion continues, after developing gout, people with statin can damage develop kidney and liver damage and often need gall bladder surgery. Continuing beyond that can result in rhabdomyolysis, which can be life threatening. From our experience, this danger exists even in the 3rd year after discontinuing the statins.You may need to visit several doctors and bring information on statin adverse effects along with you. Too many are unfamiliar with the syndrome, and they tend to deny all possibility, thus making themselves incapable of treating the true cause of the problem. "

Damaged,
from this I've decided to start an additional suppliment of sublingual ATP in between sessions of activity to see if I can indrease the number of sessions per day...

If you look into ATP synthasis, use and reuse in the body you begin to see why CO-Q10, carnatine, dribose, and magnesium oratate supplimentation are suggested. I'm just beginning to understand this whole picture and hopefully Biologist will weigh in here and explain this better

[uncle2blade]

Mike,

Before I found out that statins were the culprit, for my lower back,and hip pain, I had X-rays, MRI, and a nuclear bone scan. The Dr. I was seeing could see no nerve pinch, arthritis or stenosis.
As far as exercise goes. I couldn't. My muscles and connective tissues had to be repaired. I found they needed rest and message. these to things helped,with the help off supplementation.
Now for supplements, I use to think we didn't need supplements, but I was willing to try anything. When I took my first dose of L-Carnittine and felt some immediate relief I started to change my mind. I started reading books by some doctors that actually prescribe them and got some amazing results. Now I take a hand full three times a day. You can read my regime. on my statin story updates.
The human body is amazing, It has the abilitty to repair it self, I don't know if I will ever be 100% healed from the damage that was done, but I keep the fath and keep on truging along. If I never get any better than I am today I'll be eternally grateful for the recovery I've had Thanks to everyone of you that contribute to this forum.

Craig

[Biologist]

From the book I recommend below:

"D-ribose is the new kid on the heart supplement block.
As a building block of ATP, it rapidly restores depleted
energy in sick hearts. [Biologist's note here: And also
the same for ALL CELLS of ALL TISSUES -- yes, includ-
ing the thyroid -- that have high energy requirements.
But the heart is obviously the most important target.
Why? Because it is the organ that delivers oxygen and
nutrients to all these tissues, the absence of which
ALSO causes dysfunctionally low energy -- INCLUDING
IN THE HEART MUSCLE ITSELF as its energy is sup-
pled by the heart!! Think coronary vessels.]"

--Stephen T. Sinatra, MD (with my comments too)

Here he is again:

"You probably haven't heard about D-ribose. But you will.
It's that good. Every cell in the human body makes some
of this simple sugar molecule, but only SLOWLY and to
varying degrees, depending on the tissue. The liver,
adrenal glands, and fat tissue produce the most -- enough
to serve their purposes of making compounds involved in
the production of hormones and fatty acids. But tissue
everywhere has little."

Brooks once pointed out from his readings that we have about 5 grams of APT in our bodies at any given time, however, we go through our body's weight of it every day!!! How could that be? It is because the body recharges these same molecules millions and millions of times each day. However, when the mitochondria cannot recharge them quickly enough (because the mitochondria are damaged or don't have enough CoQ10 or carnitine, etc.) this molecule breaks down and is lost to the body and must be remade from scratch. Fine, but that can take many days or a week or more, where in the meantime you have little energy (and more pain) and you must rest. The D-ribose portion of the ATP molecule is the "rate limiting" portion in the production of new ATP. Supplementation with D-ribose speeds the process greatly. Making D-ribose is very slow in the body. Supplementing is very fast for getting new production of ATP underway. The biochemistry is not new here. I happened to have read about the process this week in my medical physiology text book. What is new, however, is the availability of D-ribose in supplemental form and Sinatra's experience with it as a cardiologist and his published findings. Cardiologists (and others) are happily ignorant about it (just as with CoQ10) as it would not increase their incomes in any manner whatsoever. They have largely ignored his work, it appears.

I take about 20 grams per day and have in the past mixed it in my drinking water for the day. The idea is to split the dosage as it does not stay in the body long -- it is not stored. Also you should take it with some fruit juice if you take much at the same time.

Go to the library and read this book -- at least the parts on D-ribose from the index listings.

*http://www.amazon.com/Reverse-Heart-Disease-Now-Cardiovascular/dp/0470228784/ref=sr_1_1/176-8907753-7003633?ie=UTF8&s=books&qid=1253720562&sr=8-1

There is much more in the book on all the supplements cited by David. And why they are needed and why they work for beatup mitochondria.

Just another tool.

On the CoQ10 current levels in the blood thing, I am skeptical it will be very meaningful (But who knows?). It is like this: Does the current level of oil in your engine tell you how much damage was done to the engine last year when you wife (sorry, girls) ran the car out of oil? The damage was done at the time. Now the engine NEEDS more oil on a regular basis as the seals are not sound. This will always be the case for that engine and its performance will never again be so good -- but it should work.

Now what is distressing about the removing of natural thyroid hormone by the FDA is that this hormone has some scientific promise to create brand new mitochondria by causing the good remaining ones to split and multiply. It is a set back to one of the most promising lines of treatment for us, as far as I am concerned. It was also very cheap and not controlled by Pharma. That doomed it.

OK, back to work for me.

Good luck.

Biologist

[damaged]

Posted by Brooks in another thread:
*http://www.businessweek.com/technology/content/sep2009/tc20090918_115353.htm?campaign_id=yhoo

“In addition, the worries are getting a boost from research on the biological effects of statins. In addition to lowering cholesterol, the drugs activate a gene that targets proteins in muscle for destruction.â€Â

[David Staup]

Mike,

I'm not sure where you read that statins activate a gene that stops the body from manufacturing CO-Q10...I've done a lot of research and not seen that anywhere.
It is known that statens themselves inhibit co-q10 production at the same time and along the same biochem pathway as for cholesterol see this page:

http://www.spacedoc.net/cause_statin_side_effects

David

[David Staup]

Mike,
within the following page on aging is the key to understanding the hows and whys for the statin caused mitochondrial mutations that are the root of our problems.

http://www.spacedoc.net/aging_mitochondrial_mutations

David

[Biologist]

This webpage is a good "supplement" for David's last posted hyperlink.

*http://www.bruceames.org/

Biologist

[cjbrooksjc]

All: take a look at this link's abstract. You can also google atrogin-1 (the gene)

**http://www.ncbi.nlm.nih.gov/pubmed/17992259

Brooks

[damaged]

Thanks for clearing this up for me.

It was statements like the one below that had me confused.

“Statin drugs, such as Lipitor and Zocor, lower cholesterol levels, but at the same time they interfere with the making of coenzyme Q10 in the body.â€Â

[cjbrooksjc]

OK. Let me try this again. Here is a modified section of an atrogin-1 gene study:

***************************
Several studies show that statins reduce circulating levels of CoQ10, but it remains unclear whether this represents a true CoQ10 deï¬Â

[Biologist]

David, where are you getting the "additional suppliment of sublingual ATP" from? Can you link directly to the product?

Thanks.


Brooks,

I am not understanding this text of yours:

"So, statins DO inhibit the mevalonate (CYP3A4)
pathway early on in it's cycle, AND every CYP3A4
pathway process (including CoQ10 production)
that follows. "

Do you have any kind of reference for that information that I can read? I have never considered the Mevalonate Pathway to be directly associated with the liver's CYP3A4 detox system. This system is certainly related to actual statin levels in the blood, which then effect CoQ10 production, but other than that, I see the two as seperate beasts. Please advise.

Thanks.

Biologist

[David Staup]

Biologist,

I decided on the following which is not specifically sublingual but is ment to be held in the mouth until it breaks down then swallowed... it's higher potentcy (225mg)and is atp- disodium. I'll probably try the 20mg atp sublingual also but later

*http://www.bayho.com/p/824230.html

and the 20 mg:

*http://www.healthdesigns.com/douglas-labs/atp-20.html?gdftrk=gdfV2379_a_7c448_a_7c1361_a_7cDL_d_83029_d_60X#full

David

[Biologist]

David, thanks. I read both pages. Please keep us posted on this.

My gut reaction is that I don't believe it. I think that it is a scam. I hope I am wrong. (It would be GREAT if I am wrong!) If this was real, it would be MAJOR news. I have seen, even on good proven supplement sites like iherb.com, the selling of human growth hormone pills and similar stuff. Absurd. The ATP molecule is very unstable and I am not even sure that we have tests to detect it in the blood. It, to my knowledge, stays in the cell that makes it. It is not like CoQ10 or cholesterol that, in addition to being made in each and every cell, is also made in the liver and then transported to the cells to supplement them.

But I could be wrong. I just don't think that I am.

But it is worth a try, it seems to me.

Biologist

[David Staup]

Biologist

"But it is worth a try, it seems to me. "

you said it all right there...and it's cheap


I should have included the following:

*http://www.ncbi.nlm.nih.gov/pubmed/15179168

note the conclusions

David