Red Yeast Rice - My story

[Nancy W]

David, I really appreciate your observations. I note that you and several others on the site have really dug into understanding the process, and I really can identify with the need to undestand. I am like that, too. Not all people really want to know all the details, but others of us are more analytic, and want good information to help in comprehending what has happened. Especially, in our case, where there is a lot of misleading information out there.

[Biologist]

Nancy, you may want to research the timing of your thyroid hormone supplementation. While I have read several books, I cannot say I remember this issue ever being discussed, and certainly not emphasized. However, for some reason it recently crossed my mind that it might be better -- somewhat counterintuitively -- to take it at night before bed. If you do some Google research, you will see that, at least by some accounts, our thyroid hormones are higher at night! I am currently doing some personal experiments with this. So far so good. It makes some sense in a way as this is when our growth hormone levels are highest and when cellular growth and repair occurs. Also, I will be doing experiments with night-time carnitine supplementation. It is said (e.g., on this forum) that it may make sleep difficult. This may be wrong, but based on "common sense intuition" rather than experimentation (i.e., a thorough trial) by individuals. Carnitine enhances the use of fatty acids by the cells, and this is the form of energy available to us while we sleep, rather than glucose burning which does not require carnitine. Just some thoughts.

BTW, your doctor may have NOT prescribed Armour Thyroid due to current availability issues. There is a severe shortage in the Country. It is said that the plants are "retooling." I do not necessarily believe that. There is too much money to be made by limiting the availability of this cheap and superior form of therapy. For this reason, I believe I recognize the smell of a rat -- a pack of them in this case.

Biologist

[Nancy W]

Thanks, Biologist, for your comments. The doc didn't say anthing about Armour, but the form he has me on is natural. He suggested I split the dose to AM and PM, so I will see how it affects my sleep. I have been taking the CoQ10 in the morning...I have had sleep problems, and so am going to be careful and analyze how each thing relates to my sleeping.

Pretty good day today. Made pickles with my daughter!

[vipergg22]

RYR is a "statin" though a lower dose naturally occurring statin. any side effecvt you have with statins you can also have with RYR. Cinnamon can be a good alternative , I take ti and used to run around 230-250 for levels and now run like less than 190 .

[Biologist]

I mentioned I smelled a rat regarding natural thyroid . Read this:

*http://articles.mercola.com/sites/articles/archive/2009/09/19/Is-the-FDA-Poised-to-Ban-a-Century-Old-Natural-Remedy.aspx

Biologist

[Nancy W]

Dear Biologist...

Thanks for catching that article on Mercola...I had missed it, probably because I hadn't yet seen the naturopath, I didn't pay as much attention. I had heard from someone else that youcan't get Armour thyroid right now, but I didn't hear the reason. Bummer!!!

So I am on one of the ones that they haven't shut down yet.

Here is the update, then. I saw the naturopath 9 days ago and began the thyroid and adrenal cortex then, and upped the levels of the fish oil and Vitamin D. I am taking all the supplements referred to as the Mitoch Cocktail here on spacedoc.net as well. I had a craniosacral session. The pain and neuropathy sensations are down significantly, from 7-9/10 at their worst, to 1/10 occasionally. My energy is up and the fatigue is much less. My exercise tolerance has gone from 10 minutes of minimal exercise back up to 1 hour of moderate exercise with intervals into my training heart range. No fatigue afterwards. Sleeping well.

We continue to eat carefully and avoid all processed food. Drink filtered water. No episodes of arrythmia, even when I have challenged with dark chocolate.

I am hopeful, cautiously hopeful. Nancy

[Biologist]

Sounds like you are making progress. Excellent.

Looks like I will also be "on one of the ones that they haven't shut down yet" real soon as now the 120 mg Armour pill is gone (as well as all the other dosage of their pills). I did get to educate a pharmacists or two in my search around town though. They are all very interested. All of this has been was kept from them. Mercola has at least one new recruit now who asked how to spell his name for a Google search!

Regarding your tachycardia/fibrillation, I came upon something of interest just now.

This guy is good. I believe I'll be spending some time reading his blog in the future:

*http://high-fat-nutrition.blogspot.com/search/label/Atrial%20tachycardia%20and%20fibrillation

It was linked from here:

*http://www.proteinpower.com/drmike/cardiovascular-disease/do-statinators-dream-of-engineered-mice/#more-3445

Biologist

[Nancy W]

Biologist,

I followed those links and found this guy, Peter, to be very interesting and even entertaining. Here was one I read:

*http://high-fat-nutrition.blogspot.com/search/label/Brain%20on%20a%20statint

He has a lot to say that is apropos to subjects we are all interested in. Lots of information sprinkled with subtle and not so subtle sarcasm. I, for one, am happy to find this site and will also keep reading.

[Nancy W]

One of our cats believes it is his job to awaken us when he wants us to notice his empty dish, or the approaching of dawn, or even the approaching of the time I have set the alarm to. He does this by knocking books off our bedside tables, overturning water glasses or ripping important papers he finds. Great, huh? Since I am the light sleeper, this usually results in my getting up, casually walking out of our bedroom to be followed by the cat, then racing back in and shutting the door before he can get back in. sometimes that results in him howling outside the door. Sometimes I capture him in a cat wrestling hold under the covers and just stroke him until, purring, he or I go to sleep. Sometimes he goes to sleep and I am left awake. Like tonight!

Oh and I have to say that the second reason I am awake is that my old dad gets up in the middle of the night and empies the dishwasher. Only tonight, I had emptied it earlier and re-filled it with more dishes, which I had then only rinsed. My dad has dementia. I could hear him emptying the dishwasher of the dirty dishes and putting them all away! So when I got up, I checked the dishes, and sure enough, they were back in the cabinets with food still on them! I got them back out and am washing them now.

I am now two months down the road from stopping the RYR. All of the medical tests have, thusfar, been unremarkable, except the allopaths still get excited over my lipid numbers. Recently I got tested for Vit D levels, homocystine, and CK. All normal. I have been telling the doc that my problem is not my muscles all along! But I do still have this polyneuropathy. Curously, this started in my feet, progressed to legs, then arms, and has worked its way up to my head, now. For several days, I have had an odd tingling in my face above my left front incisor. On and off. Then I began having strange and transient headaches. Tonight, when the cat woke me up, I was having a doozy. But, like the other odd neuropathic symptoms, it has waned without any pain medicine.


I requested the CK test to make sure that there was no rhabdo going on...which there had been some years ago when I had been on Lipitor for a month. I have been gently exercising in the pool and seem to be doing okay with it. The fatigue I had about a month ago has waned. At that point, I couldn't exercise in the pool for more than ten minutes...but now I am back up to an hour. I have purposely kept the intensity of the workout to a low level, whereas, pre-neuropathy and fatigue, I could do the aerobic thing easily for 60 minutes five days a week. I can keep up with my three lively little grandsons better than a month ago, as well, though they collectively wear any adult down...including thier parents.

So I am better, but not all the way. The involvement of the neuropathy now includes some of the cranial nerves. The pain level is more tolerable, but I still have pain. I am taking the mitoch cocktail, as well as the natural thyroid and adrenal cortex that the naturopath wanted me to take.

When I went back to my allopathic primary doc, well actually he is a nurse practitioner, the other day, I was the one doing the talking. I brought along articles, links, etc. and bent his ear for some time on all I have learned from this site. If nothing else, it was very therapeutic for ME! He is not long out of school, and admitted to me that I am the most complex patient he has had to date...or, as I think of it, I am probably the first one he has had who doesn't buy the medical approach...but, being still wet behind the ears, he was fascinated by what I was saying and I think he learned quite a bit.

We are going to California t the end of the week. I will have a couple of HBOT treatments over the weekend and see if I can tell any difference. If anything postive seems to come out of it, I may go back for more.

Next week, we will go on to Kauai for a week of respite from caring for my elderly dad. I am looking forward to that!

Well, I am going to see if I can fool the cat and spip back into our room and get some more sleep...

[Biologist]

I thoroughly enjoyed reading that post this morning, Nancy.

Thanks!

Biologist

[rkcannon]

Well whatever happened to Nancy? The story ended abruptly.

So cinnamon acts like a statin??? I've also read that magnesium can act like a statin too. Is that true? I take them both (Mg Citrate and Malate).

I've never taken statins but have noticed mild statin like effects (no neuropathy) but just mild things such as decrease in libido, lower back pains, tennis elbow, forgetfullness. I take cinnamon daily on oatmeal, a fair amount. It's a good antioxidant. I see no reason to lower cholesterol level no matter what the level. It is not the root cause of anything bad that I can see. It is the oxidation that is the problem. My total level is around 170 which I feel is too low.

Note chronic fatigue has many similar symptoms as statin damage, and I've read quite a bit about that for other reasons. One thing to consider is the effect of low blood pressure. This can plateau the recovery below normal. Often so much sodium is avoided that bp is too low because of the loss of fluids. Increasing sodium will retain more fluid and increase bp. This may be enough to cure the fatigue. This was from a woman's book on chronic fatigue and that was the last thing she did to fully recover.

[Nancy W]

Hi rkcannon,

What happened to me?

I have posted from time to time with updates, but not with this thread.

But since I am fast approaching the one year anniversary of my statin catastrophe, I will update my story...

In mid June of 2009, at the behest of my cardiologist, I started taking Red Yeast Rice for "high" cholesterol. I had had previous problems (muscle pain and an elevated CK) with Lipitor about ten years ago, so the cardiologist thought that RYR might be better...NOT!

On August 1, I awakened with screaming neuropathic pain in both my lower legs and feet. Within a month, it progressed to both legs, all the way to my hips, both arms, from my armpits to my fingers, and eventually to my face. A month into this nightmare, I suffered from debilitating fatigue.

At the time this came on, I was in great shape, exercising aerobically 5 days a week, an hour each time, with a resting heart rate of 50. I was hiking, walking, and keeping up with my three grandsons easily. Within 6 weeks, I could barely get into the pool, trying to exercise for about 10 minutes and becoming overwhelmingly weak and tired.

Allopathic medicine failed me. Testing failed to show anything. I worked instead with my Naturopath, and, though this site, began the process of figuring out what had happened and how to help the nauropathy and fatigue through the use of supplements.

Reading across many of the threads, I eventually concluded that following the roughly defined "mitochondrial cocktail" of supplements, most at a high dose, as well as high doses of Vitamin D, Vitamin E, Fish Oil and Vitamin B's, began to work. Within a month of getting on all the supplements, I was better. We tried backing down the doses about 3 months into the regimen, but, within 10 days, the symptoms were back. So I kept going with the higher doses. Six months in, I was able to cut back. The pain had resolved to occasional sharp pains in my feet and toes, fingers, and the trigeminal nerve near my upper teeth.

I kept on working to titrate the levels.

A year out, I am taking fish oil, Vitamin D, Vitamin C, and a Thorne supplement called Neurochondria which has some B vitamins, Co-Q 10, R-Lipoic Acid, Glutathione, Acetyl L Carnitine, and Phosphatylserine. The doses are no onger "high." If I stop, within 72 hours, I have some symptoms. If I take these regularly, I do pretty well.

My energy is better, but I still fatigue. Mowing our lawn would wipe me out in the spring, now I can to it without such fatigue, but if I keep on working, edging and blowing, my muscles give out in time. So fatigue is still a factor. I have returned to work as a physical therapist after three years of caregiving to my elderly father. Doing rehabilitation takes a lot of strength. I do get fatigued, but work to conserve my energy as I can through the day.

The other thing is that, having had so much pain for so long last year, I find that if I have pain of any sort, for any reason, it is more bothersome to me. I used to have a very high pain tolerance. Now I really feel it. But I have also learned to live with pain...

I am convinced that the issue is the mitochondria. Reading here, I have learned that getting this diagnosed isn't easy. So, working with naturopathy, I am just working to be as healthy as I can, shunning traditional medical approaches and drugs, watching this site for new information and learning all I can.

Dr. Graveline's recent letter was so telling, how traditional medicine has ignored or willfully denied what he has brought up to them. Just says how pervasive the Big Pharma and AMA propaganda are...

I press on...Nancy

[rkcannon]

Nancy,

Have you tried Ribose? It sometimes helps those with fibromyalgia and is a cellular energy source. Seems that there are some similar symptoms with statin damage. MSG and other glutamates can aggravate pain too.

I really think the statin damage opens up the cells to toxins that are very difficult to get rid of later, such as heavy metals we are continuously exposed to. Chocolate for example has high lead levels.

[Nancy W]

rkcannon,

Thanks for your thoughts. I will look into Ribose.

I already had problems with MSG before the RYR. So I avoid it like the plague.

Interesting info on chocolate. I do like chocolate. I have never tried to relate having chocolate to having pain or fatigue. I will watch more closely!

Thanks again!

[David Staup]

rkcannon,
fibro and chronic fatigue are both mitochondrial dysfunction "syndromes" as is most statin damage. In my case I have most of the "symptoms" of CFS plus a few extra. I've posted this here before but it's worth a second look. follow the link to a pdf boocklet with some very good explainations of the whole picture and has some very good advice on how to recover.

http://drmyhill.co.uk/drmyhill/images/7 ... ook_27.pdf

I believe that most statin damage, in all it's different manifestations is, at the root, mitochondrial dysfunction. To me it makes sense to look at what these other groups involved with mito have to offer and for my money the above booklet is a real find for anybody with long term statin damage or any other mito of other causes.

Nancy,
the d-ribose is a sugar, not very sweet tasting, that is the base upon which ATP is constructed and providing it daily will greatly facilitate the replacement of ATP lost during activity ( overactivity). 1 tsp twice per day in tea or coffee (caffeen stimulates the process) or your drink of choice is fine...mostly it will shorten the recovery when you really over do it and will allow a bit more time of just doing a bit more than you should before you have to recover....how's that for a run-on sentence

[Nancy W]

Hi All,

I have been telling myself that I would sit down and post these links to Dr. Joseph Mercola's website and articles about statins. This link is to an article about the dangers of Red Yeast Rice:

http://articles.mercola.com/sites/artic ... Yeast.aspx

I should have never let the cardiologist talk me in to trying RYR last year. The rest is history.

David Staup - As always thanks for the sage post. I really look up to you! I will try the D-Ribose. Makes sense, and that is what happens to me. I start strong and all of a sudden my muscles simply poop out. Thanks!

Nancy

[rkcannon]

Nancy it is good to hear of your improvement. I read a woman's book about her CFS recovery. One interesting issue was low blood pressure. There was some research associating this with CFS. She had plateaued and couldn't get back to normal but had low BP. She avoided salt because of the bad reputation. Big mistake. This caused her to have low water uptake and low blood volume hence low BP. So she started eating more salt. (sea salt is best I'm sure you know, for the add'l trace minerals). Her BP went up and she then fully recovered.

Blood pressure is needed to get at the extremities where stuff hides I think. Maybe salt is healthy after all too.

re Chocolate- it has all the antioxidants too but processing with alkali reduces these benefits by 60% or something. The Hershey's website really has some good info on it. But they don't mention lead. Science News had a big article on it awhile back. But they reformatted their magazine and GOT RID OF all the good health info, and emphasise the drug research now...... drug companies will control all soon!

[pmgamer18]

Nancy I am a mod. at this forum for Men's Thyroid
http://forums.realthyroidhelp.com/
we all use to be at http://www.stopthethyroidmadness.com/
But the mods and the ower were so busy they were suffering from burnout and they shut the forum down.

Here are some things I know about Thyroid people should have there Cortisol levels checked before going on NTH med the hormone can build up on ones blood and get very high. You need Cortisol to carry the hormone out of the blood into the cells.

My self I am on Cortef and HC med I take 30 mgs over the day in div. dose's.

The best way to check this is to do a 4x's in a day Saliva test for Cortisol. You should have higher levels in the morning going down by bedtime. Here is a good link about this I feel everyone suffering from Statin Drugs should test this the stress we are under can over work ones Adrenals and they can end up with low levels of Cortisol.
http://livingnetwork.co.za/hormones/adrenal-fatigue/

When the Thyroid hormones get to high in the blood due to this you can feel so bad you think your having a heart attack.

Phil

[Nancy W]

Thanks for the infor on thyroid, and on cortisol. Yes, I would agree that stress does accompany all these changes, especially when the changes are significant@

[pmgamer18]

I am on HC meds Cortef I do 30 mgs a day. I have not had to stress dose yet. But the stress of the pain I am in my Testosterone levels fell from the 800's to the 500's this is bad. My Dr. had to increase my Testosterone shots to keep my levels up.
Phil