Red Yeast Rice - Update on my progress

[Nancy W]

Greetings, It has now been exactly three months since I had the onset of severe neuropathic pain that I suspected came from the RYR I had been taking for the previous 6 weeks. I stopped the RYR immediately. Perhaps ten years previously, I had muscle pain with an elevated CK after one month of Lipitor and it took about 12 weeks for the sympotmos of muscle pain to dissapate following stopping the Lipitor.

This time, I got talked into RYR by the doctor saying it was not as strong...
I should have known better.

This time, I had no muscle involvement at all, though interestingly enough, my nurse practitioner diagnosed it as "myalgia." I am a physical therapist, and the pain was clearly neuropathic, following the course of the nerves in my legs and arms. In the beginning of August, I had pain in my toes, then feet and ankles, later calves, and finally frommy but to my toes. It progressed at the same time, to hands, then forearms and hands and finally armpits to hands. The pain levels were 8-9/10 at that point. I found this website.

With the help of some of the members on this forum, as well as all the reading I did, including Dr. Gravlines books, and Dr. Golomb's article, I fiigured out what was going on, and began the supplements loosely called the Mitochondrial Cocktail.

At that point, just as I was starting the supplements, I also began experiencing severe muscle fatigue with exercise (about a month into all of this). I had, for five months, been doing daily deep water aerobics for an hour each day, getting my heart rate up to about 120 (I am 60). My resting heart rate had slowly gone down to 50 or less prior to the statin damage. I was in great shape. Suddenly, I couldn't exercise more than 10 minutes, nor could I get anywhere near an aerobic workout.

I saw my cardiologist, who just couldn't believe all my symptoms were statin related. He was the guy who put me on RYR. He handed me some Crestor samples and said, "When the neurologist finds out the real cause, which is probably your back, you can start the Crestor." Haha.

I then drove the three hours to the Portland area to my naturopath, who not only agreed with me, he upped all the supplements to higher doses, plus put me on natural thyroid and adrenal cortex.

Within one week, I was back up to exercising for 60 minutes...though not at an aerobic pace. That has been coming back a bit slower. At that point, I began to experience the pain was decreasing proximally, and was mostly in my hands and feet, but not my arms and legs. In early October, I did a trial of two hyperbaric oxygen sessions, after which I have had almost no hand pain. The foot pain decreased to being just the plantar surfaces of various toes (varies) at about 1-2/10. By the second week of October, I had my first pain-free day. Now I have had up to three pain-free days in a row...and the pain, when it comes, is transient, it comes and goes in a matter of minutes. Different toes. Once in a great while I have some arm hand pain...but then I have had thoracic outlet on that side on and off for some time...so it could be TOS, not statin neropathy.

Last week, I saw the naturopath again. He cut the supplement doses in half, telling me if my pain comes back, to immediately go back to the larger doses.

So, that is where I am now. The pain is definitely much much less, though I still have occasional zings down a nerve. My energy is much better, muscle fatigue is much less. I have been able to do some major yardwork, cleaning up the yard and raking the leaves in preparation for the wintger. I could not have done this one month ago.

I am cautiously optimistic, but cognizant that the neuropathy is not completely gone. I will continue with all the supplements at the current level. If the pain does not go away, I may go back for more hyperbarics. The doc there suggested the full treatment would be about 30 sessions, done 2/day for two weeks, give or take. That is at the Whitaker Clinic in Newport Beach, CA. I can not conclusively say that two treatments I had made a big difference...but I think I could tall that the foot pain diminished some...so doing the full thing might be one way to go.

I am so appreciative of all the infomation I found here, and for the support I have received so far. I am going to give copies of Dr. Gravelines newest book to my primary doc and my cardiologist. My naturopath plans to buy one for himself...he just took down the information from the book.

I do not plan to go to a neurologist just yet. I have found out about one who is open to complementary medicine, so she is who I will see, if I go. Knowing all I know about neurology, I don't know what she can tell me that I don't already know. I certainly don't want any drugs. Heaven forbid!! I will wait to see the cardiologist until I finish losing the weight I need to lose. I am half way to that goal. No more statins!!!

Oh, and one last detail. Other than cholesterol levels that send allopaths running for the medicine chest, everything else, including homocysteine levels, Vitamin D3 levels and CK levels were normal at the beginning of October.

I was out of town for much of October...but now I am back, so I will be following this forum more closely again.

Nancy

[David Staup]

Nancy,
it is good to hear from you again! Especially good to hear of your recovery...we all hope you continue to improve and hopefully one day soon you will report a full recovery!

David