Red Yeast Rice - My story

[Nancy W]

I am new to this forum. It has been very enlightening reading all of your posts! about 10 years ago, I was on Lipitor for 4-6 weeks when I developed flank and hip pain. I was suspicious and asked my doc to order a CK level to be drawn, which she did. It was high and I stopped the Lipitor.

A decade goes by. My lipid tests routinely excite my doctor, who has me try Niacin. I don't tolerate Niacin, especially since I have rosacea. In January of this year, I was having sudden bursts of tachycardia and elevated BP. I ended up at the cardiologist. They ran the more involved lipid tests, NMR, which give "platelet" levels. From what I am beginning to learn, the usual lipid levels were abnormal by AMA standards, but the LDL-P levels really got their attention, as I was way off the charts high. they told me this profile showed that my dyslipidemia was familial/genetic. They knew I had been intolerant of Lipitor. I also have an excellent naturopath. The cardiologist recommended dietary and lifestyle changes (exercise), and suggested I try Red Yeast Rice as an alternative. He was open to consulting with my naturopath.

The naturopath saw me, looked at the lipid testing, and said my cholesterol levels were normal for my age and sex. He was skeptical about the RYR, but said to give it a try, making sure to take CoQ10, Vit D, Fish Oil and Vit E. So I took RYR for about 6 weeks.

I did, at this point make big changes in my diet and exercise and for the last five months, I have done deep water aerobics, an hour per day, five days per week, with walking or hiking on the weekends. We have been eating only humanely raised, grass-fed meats, and we bought a crop share at a local organic farm, so we have been eating a wonderful abundance of organic vegetables since the spring.

I concluded that the arrythmia and blood pressure spikes were more likely related to MSG in restaurant foods, as I only had five episodes and each was after a restaurant meals. We cut all processed food from our diet. I have had no more arrythmias, and my BP is normal.

While on vacation in early May, I experienced some back and hip pain so I stopped the RYR. The pain was short lived. I did not have CK testing done since the pain lasted only a day. Back at home, I went another couple of months with no symptoms, and then decided to go back on the RYR. This time I was on it for about 6 weeks when I had a sudden onset of severe neuropathic leg pain (in early August). I again stopped the RYR, and this time saw my doc, who initiated some consults to figure out the leg pain. NO CK testing done. Testing by both cardiology and vascular medicine have been done. The cardiologist was delighted with the downward trend, but the numbers, especially the NMR Platelet numbers were still higher than they wanted. He dismissed the RYR as the culprit, but I told him I wasn't going back on it. So he told me that once the other specialists ruled out statins as the cause, I should go on Crestor!!!! And he gave me samples. Yikes!!

The vascular evaluation turned up nothing. My arteries and veins are in good shape, save two small varicose veins in my calves, which shouldn't be causing all this pain. The vascular surgeon unequivocally said do not take RYR as it is a statin. funny, the cardiologist didn't have the same passion about statins.

So, in the last month, the pain seemed to be abating, which made me all the more suspicious of the RYR. About a week ago, I was working out in the gym (a new activity I had added to the aerobics) for only the second time. I experienced extreme fatigue with the exercises. Unlike even the week before. And then one night this week I had a return of extreme neuropathic pain in my feet and legs. And some neuropathic hand pain, as well. Some nausea.

I am a physical therapist with 40 years of experience, and know that this is not a typical pain presentation. I knew the generalized and random nature of it would more likely be either chemically induced, or perhaps related to something like MS, though I doubt that diagnosis.

I started doing more research online. This is when I found this site. I read about the demyelinating effect of statins. This all fits.

So my question is, since I don't see a topic on the basic list called Red Yeast Rice, are there others of you who have had this experience with RYR? Yesterday one of the women I swim with was listening to me talk about this, and exclaimed that she had switched form simvastatin to RYR thinking it was better for her and now has nighttime cramping in her hands, and a tennis elbow like syndrome going on in her arms. I have referred her to this site, too.

I am glad to have found this site and look forward to continued reading. I will see my naturopath this week and get his slant.

One other question: does anyone her have experience with the NMR/Platelet testing as part of the lipid studies? From what I can find out, although the doctors are being given a "range " of what is "normal", they have no idea what to do with the results.

It is clear to me that my cardiologist knows very little about the benefits of cholesterol, and has bought the "party line" hook, line and sinker!

Nancy W

[David Staup]

Dear Nancy,
Welcome
We are all so very sorry that you need to be here

Red rice yeast is a Statin. See the following page from this site:


http://www.spacedoc.net/red_yeast_rice.htm

If you have any questions we are here.

David

[Nancy W]

David,

Thank you for the link.

I have another question of a more generalized nature: are the side effects of statins in any way proportional to the dose of the statin or length of time taken?

Thanks again,

Nancy W

[David Staup]

Nancy.

you wrote
"I have another question of a more generalized nature: are the side effects of statins in any way proportional to the dose of the statin or length of time taken? "

yes and no, in a personal way yes you are more likely to experience worsening symptoms at higher doses for longer periods. But in a group some people will experience more severe symptoms at lower doses and shorter eposures...
on the good side most people recover to some level in some time. it's hard to be more specific as everyone is different...

David

[David Staup]

Nancy

I just looked at your profile and then googled "Craniosacral Therapy".
All I can say is Wish you were here :)

David

[Nancy W]

Thanks for your honest answer...I suspected that would be the answer. In all the years that I have done physical therapy, I totally understand the individuality of responses to treatment. Now that it is me asking the question, my professional self knows that answer, while my personal self has hopes for a swift and complete recovery.

Which brings up another question. Any ideas on whether exercise aggravates the neuropathy or myopathy? I feel like I am sailing in uncharted waters. I began my exercise program in earnest last spring, with great results so far. Now I do notice the fatigue and pain...I have scaled back the intensity of the water aerobics, and am wondering about strength training. Any experience with this?

Yes, craniosacral therapy is amazing. Although I was trained in a basic level nearly 20 years ago, and used the techniques with good results, I have, over the last 2 1/2 years, dug in much deeper with more classes and work to become certified. It is with this level of skill that I find the work to be much more than I had initially thought. When I work on an individual, it is like discovering a whole inner universe.

On a practical level, it is very gentle work. It releases physical and emotional restriction, promoting improved circulation and flexibility, often decreasing pain. It is helpful for many different things and can be done on people of all ages from preemies to the frail elderly.

I have a trading partner who is a naturopath. We haven't had much time to work this summer, but I look forward to discovering if the cranio will be helpful with my issues related to the statins. I will report more when I know.

There are people all over the world doing this work. Perhaps even where you live...

Thanks again, Nancy

[David Staup]

Nancy,
your question:

"Any ideas on whether exercise aggravates the neuropathy or myopathy? I feel like I am sailing in uncharted waters. I began my exercise program in earnest last spring, with great results so far. Now I do notice the fatigue and pain...I have scaled back the intensity of the water aerobics, and am wondering about strength training. Any experience with this?"

I would not suggest you exercise at all for a period of 2-3 months while you start the suppliment regime and allow your body to recover and then to work into it as your condition allows. Not knowing the full extent of you symptoms and tolerance level makes it difficult to judge how to guide you through recovery... .I've sent you an email with my phone # why don't you give me a call.

David

[Ray Holder]

Nancy
I don't see carnitine among your supplements, carnitine levels appear to drop with statin use, and the main result is often muscle pain due to lack of carnitine's second use, clearing away the "ashes" from energy production in the mitochondria, resulting in lactic acidosis. You don't appear to have real signs of trouble from L carnitine deficiency in muscle energy production from fat in the mitochondria, but this might appear in more subtle form as energy shortfall in the heart at night, when blood sugar levels fall and fat has to be used as fuel, possibly showing up as arrythma in the night. I have a serious carnitine deficiency from previous polio, showing up as night time heart energy loss.

Unfortunately, the "use it or lose it" adage does not apply to Q10 and carnitine deficiency, becoming "use it and lose it", hard for a physical therapist to comprehend, but unfortunately true in a number of cases.

You are doing the right thing in questioning the statin lobby, I hope you can continue to find improvement in your condition.

Ray

[uncle2blade]

Nancy, I know you have probably already done so, but if not, go to statin stories and statin story updates on this forum. Please read what others have experienced, and what they have done.

I can't say enough about how the members of this forum have helped me.

I pray you will benefit as much as I have. Welcome to our board please let us know how you are doing. This works because of the people who continue to share.

Best to you, Craig

[Nancy W]

David, Thanks again for our discussion, and I will be getting back to you.

Ray, I did start acetyl L carnitine, yesterday. Anybody experience any arrythmias taking it? Not sure why I was having some PAT an hour after I took it. Nothing else had changed.

Question: Does anyone have the link to Dr. Golomb's actual paper on the Adverse Effects of Statins? I know I had my eyes on it over the weekend, but I didn't bookmark it. I would like to bring it to my physician.

I am going to see my naturopath on Thursday. Saw the vascular doc for the second time, and again, no vascular problems from his point of view. Next is supposed to be a neurologist...I am skeptical. Would love to have her article in hand.

It is so good to find this site. Now my husband is reading it, too. Turns out he was taking the same RYR I was, and finally told me he is having paresthesias in his fingers. He stopped quite a while ago.

Nancy

[Allen1]

Hi there Nancy,

if I remember correctly, when I first started to take L-Carnitine a lot of my symptoms felt more pronounced for a week or so, after that though, the improvements were noticeable and most sensations faded away into the background. I should imagine it would be the same for Acetyl L Carnitine and would see how you feel after a couple of weeks, I really am pleased that Ray and adec told me about Q10 and Carnitine, they do make quite a difference to your comfort and strength situation after statin damage.

Although Q10 and Carnitine are not a cure, they certainly do make a large difference to what you can do, that is not always appreciated until you run out and realise just how bad you feel (nothing to do with dependency).

All the best,
Allen :)

[David Staup]

Nancy,

no problem you may call me anytime.

I havetwolinks for you and others. first the UCSD study site home:

*https://www.statineffects.com/info/

next the adverse effects page (general terms):

*https://www.statineffects.com/info/adverse_effects.htm

The actual study results paper must be purchased from sites such as the following:


*http://adisonline.com/cardiovascular/pages/articleviewer.aspx?year=2008&issue=08060&article=00004&type=abstract


David

[Biologist]

Nancy,

You are probably right about the MSG and the tachycardia / arrythmia. That sounds like a winner of a conclusion to me. However, just for the record though, thyroid gland occasionally ending up in ground beef use to be a fairly common problem. I'd imagine it still is a cause of unexplained rare arrythmias from time to time. Who would have guessed that!

Somewhat related, I have come to the tentative conclusion that ONE OF THE reasons the medical community shies away from Armour Thyroid treatment for hypothyroid conditions is due to the "unmetered" T3 that it provides. Atrial fibrillation, perhaps perceived similarly as arrythmia, can be brought on by too much. Many of the synthetics are only T4, and it must be converted by the body to the active T3, therefore, it is physiologically "metered." Old people (or younger memory impaired statin people!) forgetting they have already taken the their medicine could be a significant problem.

If you are taking cinnamon by any chance, it would be a good time to cut that out too. At present, I consider cinnamon to probably be a better alternative to RYR due to some of the other bioactive "ingredients"/molecules it contains that may offer some good IF someone where so inclined to lower their cholesterol (while the legitimate indications for the use of any statin -- natural or otherwise -- are few and far between, if they exist at all, in my book).

Good to have your input in the forum.

Biologist

[Nancy W]

Thanks to you, Biologist, for your comments about arrythmias. Seems, in the state that I am currently in, that I am more sensitive than previously. Given that I stay well hydrated, eat well, and make sure to get the electrolytes either in my diet, or in supplements, the arrythmias have actually been more frequent in the last several weeks, corresponding to the period when my extreme fatigue began and the neuropathy exacerbated.

The model in my head is that I am already a "canary" human being, in that I am more sensitive to many substances than most people. The toxicity/statin damage has lowered my threshold to sensitivity.

I am appreciating your thoughtful posts; this forum has become a life ring for me to hold onto in these uncharted waters.

I did the second dose of the ALCAR without arrythmias, so hopefully it wasn't the cause the first day.

[Nancy W]

Thanks, too, for your thoughts about using cinnamon. Nancy

[Biologist]

More of on the RYR statin:

*http://articles.mercola.com/sites/articles/archive/2009/09/10/Why-You-Should-Avoid-Red-Rice-Yeast.aspx

Biologist

[Nancy W]

Hi...and yes, I got that article this morning, as well. Timely, I might add.

I drove 7 hours round trip to see my naturopath near Portland today. He concurs that I am statin-damaged, and wants me to up the amount of fish oil and Vitamin D I am taking. He added some other things in support of my nervous system like choline.

He will write to my allopathic doc and render his opinion: statin damage, thinks my cholesterol is "normal." Actually thinks I am healthier in some ways than whe I first saw him for arrythmias 9 months ago, which is good news, despite the neuropathy.

I am tired form the trip, but will synthesize his ideas and recheck the amounts of things I am on in the morning.

Question for anyone reading this: has anyone ever tried hyperbaric oxygen for treatment of statin damage? I have access to HBOT at a clinic in southern California that my husband and I helped to get started many years ago.

So glad for this site. Nancy

[David Staup]

Hi nancy,

I have seen HBOT used to treat atherosclorosis but not specifically for statin damage. I suspect it's possibly benificial for certain damage modes.
If you have access go for it, I don't see a mechanism where it would hurt and who knows it could help keep us informed

David

[Nancy W]

I saw the naturopath on Tuursday.

He takes a careful and thorough history, and I was able to give him not only the details of my difficulties over the last six weeks, but also the information I have gleaned from you all here at spacedoc.net, from reading Dr. Graveline's book on Statin Drugs as well as all the links you have provided.

He did a careful exam, then. I started seeing him in January when I had the tachycardia from MSG. I saw him again in April, after I had implemented some of his suggestions. He had not seen me since I had lost weight using Weight Watchers, and soing the water aerobics. From his data, he said that from a "health" standpoint, I had continued to improve over April and January, which was great news. But he concurred that I have been "poisoned" by the Red Yeast Rice.

He said, we need to give your nervous system every chande we can to heal. I explained the supplements I had started since coming to this site, the B Vitamins, the ALCAR, the ALA. He tripled my dose of Fish Oil, though there is some confusion as to how many "mg" he actually wants me to take, and he quintupled the Vit D3 to 10,000 iu.

He also started me on Adrenal Cortex and non-synthetic Thyroid...it is not Armour, but RLC Labs out of Arizona. I believe it's origin is beef, but I need to go to their website and check that out. He cautioned me to call him if I have tachycardia or nervousness. As sensitive as I am to things, you can bet I will.

He put me on Choline. And gave me the homeopathic, phosphorus, as well as two he didn't name for noe. That is consistent with how homeopaths work. He didn't send me home with any homeopathics this time. The ones he had given me earlier this year, I no longer need.

As far as how I am doing, I would say that the fatigue is worse, the pain is better, but still there. I have now read so much, that I do tend to wonder about the course of this. Is there a point where people seem to level out in terms of the worsening of symptoms? Also, and this is my husband's question to me, did any of you experience variability of symptoms throughout the day? In other words, I notice pain in my shoulders and arms for a while, or feel fatigue there, then that fades, but later I notice burning in my toes, and so on. Has anyone experienced this?

So here I am, like all of you. I am sure glad to have found this site.

Nancy

[David Staup]

Nancy,

your questions:

"Is there a point where people seem to level out in terms of the worsening of symptoms?

[b]Yes and no for me my symptoms lessen and/or woorsen depending on my activity level short term and long term. I have kept a journal for several years and it was quite some time before I recognised the pattern. For me there is a 36 to 48 hour delay between over doing it and paying for the over doing. I was an engineer and data is important to my understanding[/b]


Also, and this is my husband's question to me, did any of you experience variability of symptoms throughout the day? In other words, I notice pain in my shoulders and arms for a while, or feel fatigue there, then that fades, but later I notice burning in my toes, and so on. Has anyone experienced this?


[b]yes the symptoms vary through the day unless I have really overdone it in the past and then recovery is a long term process.[/b][/b]

David