crestor- permanent damage

[Chantelle]

I do sincerely aplogize to the person David that gave me the sites to look at.. I finally found the site that has the doctor that actually studies statins and may be of help to me.. I am happy that I was able to get that information
I was reading the mitochondrial disorders and its hard on a guy..For sure this condition of mine has advanced past the basics..I will never ever understand why the doctor couldnt pick up on anything..If there was as they say bacteria around the pancreas back in 2008 or so then god knows what is happening now there?
Would a naturopath be able to help with the supplements as who actually decides the amount that one needs?


This a tragic helpless feeling
.

I have printed the material out and am going to give it to the new doctor but not sure that he wants to challenge this. ( I also have the sites for him to look). I have already told him that I dont expect much of him as they not like mysteries such as this one for sure that if he refers me for proper investigation then thats good enough for me.
I can only pray that he doesnt start harassing me like the last one did.
I live in Alberta, Canada . ( thats a minus in this case)

[David Staup]

Chantelle,

no need to apologise at all, I should have been more helpfull with the suppliments!

I was sure someone else would chime in...I've been typing to much lately and my hands are very painfull but I'll tell you what I'm taking. for the statin damage.

coq10 2-400 mg for several months then maybe back off to 100 (you may want to start at 100 and build up over several weeks

ATP suppliment 125-250 mg per day depending on activity level, I have only found this on the net see following..

"http://www.spacedoc.net/board/viewtopic.php?t=1649

acelty L- carnitine 400mg x2 per day

alpha lipoic ACID 200 MG 2X PER DAY

d-ribose 4- 6 grams per day (mixed with water and drink some 3-4 times)

magnesium 500 mg 2x per day

selenium 200 mcg

zinc 50 mg

D-3 (vitamin) 5000 IU 2x per day

you should also be checked for hypothyroidism and adrenal fatigue,
and discuss all of the above with your doctor (some here have had good luck with a naturopath )

nancy w wrote the following in another thread:

"What did I do? After all the reading, after the good advice from some of you, and after sharing Golumb's article and Dr. Graveline's book with my Naturopath, I embarked on a regimen of taking supplements that were roughly the "mitochondrial cocktail" that is discussed here. My naturopath also had me taking naturopathic doses of natural thyroid and adrenal cortex for a time, as well as supplements for my GI system. By the end of October, I was better, so the naturopath cut the high doses in half. About ten days later, my neuropathy was worsening, so I went to the full dose and the pain subsided. A couple of weeks later, having become an "expert" at taking fistfulls of supleements, I swallowd a handful with not enough water, just before eating oats for breakfast. The whole mess stuck in my esophagus and I got a burn from the vitamins as they dissolved in place before finally going down. Ouch! "

here is the thread:

http://www.spacedoc.net/board/viewtopic.php?t=1649

you may want to email her (check her profile for contact)

we all know the trials of this situation you just have to be as well armed as possible and find the right doctors. there is hope, many do recover enough to lead a more normal life..we ALL hope you are one of those who recovers and we will always be here with coping suggestions if needed.

David

[Nancy W]

Chantelle,

If you are still coming to this site, I wanted to add to what David Staup shared from my experience, so you might have some hope.

Six months after the onset of very painful neuropathy in my feet, legs, hands and arms (and definitely not muscle pain), I am much better. As I had said, I was taking roughly what is described as the mitochondrial cocktail, as well as naturopathic versions of thyroid and adrenal cortex. I suffered a mild esophageal burn from taking too many vitamins with not enough water in November, and was put on a proton pump inhibitor, Prevacid. "Canary" as I am I suffered debilitating stomach pain for six weeks and went through lots of expensive tests with negative results, only to figure out that it was the Prevacid that was causing my ongoing pain. I stopped it and no longer had the constipation and gas pain it was causing. During that six weeks, I was having a rough time taking the supplements. But, blessedly, the neuropathy had become minimal. Now four weeks off the Prevacid, I only have occasional neuropathic pain. I saw the naturopath yesterday, who recommended I continue the mitochondrial support for another two months at a greatly reduced dose, and the same with the adrenal cortex and thyroid.

I have given up listening to my MD...I tell her! Dr. Graveline's most recent book has very excellent information on the adverse effects of statins, including a very useful appendix at the end. He is supposed to be publishing a new book on mitochondrial issues soon. The last time I saw my regular MD, I will have to say that she was amazed...

Learn all you can from this site, and from the doctors and their books. It is invaluable!

Nancy W

[Chantelle]

I am now still fighting to get help. I keep getting blood testing and why arent these deficiences showing up in my blood?
I am still trying to get a referral to the specialist.. Will he be able ot find the needed nutrients that my body lacks as the way our health care system is so bad here its money out of own pocket to see a naturopath..Would you say that the doctors wont ever be able to help me with this? I know the naturopath the best route but having trouble with money.. I want to take these additional vitamins but not know how much to take on my own? All good suggestions greatly appreciated

[Nancy W]

Chantelle,

Not sure what blood tests you are having. The traditional MD's will test for rhabdomylysis (muscle damage) by doing a blood test that looks for the presence of the enzyme Creatinine Kinase, which shows up when there is muscle damage. I had that problem with Lipitor, after one month of taking it, ten years ago. And at that time, I did have severe muscle pain. This time around, on Red Yeast Rice, the pain was totally different...neuropathic pain, stabbing in my toes, feet, legs, hands, arms, armpits, and eventually my face and trunk. So the CK test was useless. Most of the statin commmercials in the States only address the side effects of muscle pain. Never a mention of nerve pain.

Before I actually got to the naturopath, I did a lot of research, much of it right here on this site. Believe me, some of the members of this forum are more up on this than many doctors. At least as far as sharing what they have learned. Which is amazing. I also got Dr. Graveline's books at the library, then eventually bought some of them as well as some of the books from the other docs on the home page.

If you read Dr. Graveline's books from first to last, you will get the idea of the progression of his knowledge. For me, his most recent, "The Statin Damage Crisis," summed up what he has learned over time. I also liked Dr. Mc Cully's book, "The heart Revolution," and Dr. Kendrick's book, "The Great Cholesterol Con." I felt that, for me, it was important to become knowledgeable about the entire process, so I could speak with some level of confidence with my various doctors. Gaining knowledge about the role of cholesterol in the Mevalonate Pathway, and the downstream effects of lowering it with statins was very important. I discovered that many doctors had no idea about the physiology of this important substance in our bodies.

Through all the reading of the books, and on this site, I figured out that for some of us, the problem is not as simple as "muscle pain." It is serous problem with energy brought on by damage to the mitochondria, which are responsible for the generation of energy within each cell nucleus. Hence the term "Mitochondrial Cocktail" for the group of supplements, beginning with CoQ 10, that support the mitochondria. What I also learned from all the good floks here, is that the amounts can vary by person. It was important for me to understand the ranges of supplements used. I took a lot of notes. I eventually came up with the list that seemed to be common to all. I also learned that taking supplements at the level needed is expensive. There are suggestions within the site for ways to bring the cost down through using certain providers.

Armed with my new knowledge, I then made the appointment with the naturopath. In one visit, which I had to pay for, we figured out dosages. He added the thyroid and adrenal cortex, as well as choline, in my case. Also high doses of Vitamin D3.

It then took about a month to begin to realize that they symptoms were decreasing. Two months to get to the point where I was cautiously optimistic, five months to start to actually feel better, and at six months, doing well.

I caution you, however, that each one of us is different, and if
you read carefully you will understand that depending on a person, the length and dosage of the statin, and other factors, some folks here have much more serious problems. You will read that there is an apparent link with other neuromuscular problems, which are even more serious. Some of this research is not yet conclusive, but you will understand that taking care of your problem, to the best of our ability, is very important.

If you are suspecting mitochondrial damage, there are some more sophisticated testsw which can be done, by certain specialists who work in the field, like spedialists who deal with muscular dystrophy in particular. You can find out about those tests within these forums, though there are only a few people who have written about them.

I believe I read that Dr. Graveline is publishing a new book soon that directly addresses the mitochondrial issue.

Since I also have to pay for naturopathy, I have tried to use his time well by being well informed and going in with a specific list of questions.

I saw my regular MD recently. She was blown away by my knowedge, and by the fact that I was so much better, WITHOUT the help of traditional allopathic medicine. I might say she was speechless!

Nancy

[David Staup]

Nancy,

Glad to hear you are doing so well!

David

[Allen1]

That's Excellent news Nancy,

its good to read about improvements and I enjoyed both yours and David's recent posts, I've not managed to think properly to write any replies for a few days but I will keep reading and hoping things continue to improve for you and all the rest of us

All the best,
Allen