When I first wrote of my personal side effects of Lipitor, my words were focused purely on transient global amnesia (TGA). This is because, in 1999, shortly after this drug was started by my doctors at Johnson Space Center as part of my annual astronaut physical, this is what I experienced.
A year later, they re-started me on the same statin, Lipitor, at half the previous dose, saying that my first 6-hour episode of TGA was only a coincidence. Two months later, I again experienced TGA. For twelve hours I was a thirteen-year-old high school student who knew my subjects, teachers and every kid in my class (according to my worried wife) but with no memory for my entire adult life. I laughed when they told me I was married with children and a doctor. I could not have doctored a mouse and certainly had no children. I was thirteen! Fifty-six years of rich and fulfilled adult life had vanished from my mind as if it had never occurred.
After recovery and several years of research on statin drug side effects I considered myself to be lucky to have had only TGA, for when it is over, you are back to normal. Not so for most of the other statin victims in my bulging repository with their persistent neuromuscular problems, short term memory loss and ALS and Parkinsonism-like reactions.
But now, having read thousands of reports from statin-damaged people, I wonder what the true effect of a statin really has been on my body? For suddenly, in two and one-half years, I have grown old, with weakness and easy fatigability, my coordination is terrible and my reactions are slow.
Back in 1999 when Lipitor was first started, I lived on the side of a mountain. Climbing that mountain was a normal, daily exercise event for me, as was cutting and splitting my own wood and doing odd jobs for my neighbors. No job was too great, from cutting up an aged maple tree downed by unusual winds to replacement of a concrete porch floor cracked by frost. Doctor though I was in the past, handy-man I was in my present retired state. Seemingly, I thrived on physical activity and work and it had always been that way from my early life on a dairy farm - the work ethic of being born and raised during the depression years, I suppose.
By 2003 I had noted the gradual onset of unusual tiredness, easy fatigability and weakness. Cutting and splitting my own wood now required surprising effort. Then it seemed my low back and legs ached uncomfortably after only minimal exercise as if they had been strained excessively. I experienced no discomfort during sleep or recumbency, only after activity. My flowerbeds went untended.
Yes, I was older but these were not what one usually expects with age. Change was evident on a scale of months not years. This was most definitely not the usual aging process. Trust me, after 32 years of family medicine I knew that and as a doctor I had checked my vitals from time to time curiously searching for clues. This was not heart or lung, I deduced. And my annual physicals were always normal. This was some non-specific muscle weakness problem.
X-rays showed moderate degenerative changes throughout my lumbar spine with some narrowing. Other imaging studies showed mild to moderate spinal stenosis. Response to steroids was positive. Although the surgeon admitted he had seen far worse imaging studies, surgical decompression was done with titanium rod stabilization.
Six months post surgery I realized my post-surgical recovery was going backward again rather than forward with increasing weakness and discomfort in low back and legs with the addition of awareness of in-coordination. Walking a straight line, which most of us do without thought, now began to require some concentration.
Then came my never to be forgotten first episode of food aspiration. While enjoying a spinach salad with pecans during Christmas dinner with friends, an entire pecan half, well lubricated with olive oil, slid down through my larynx into my right lung. This is one of the hallmarks of ALS and of course I had been dwelling on this possibility because of my repository of reports from statin damaged victims.
In just three years I had gone from a physically fit to a doddering old man wondering how all this could have happened so fast. I was slow to recognize the truth for initially I was convinced that my problem was mechanical and fixable by surgery.
Then in my repository of statin victims tales I read of case after case of statin associated fatigability, muscle weakness with progressive disability and began to understand why I might never get better. An ALS-like condition was my suspected diagnosis, I thought, hidden by the reality of mild to moderate spinal stenosis.
The X-ray evidence of degenerative change was probably about normal for my age of 76 and unusual history of physical activity. My initial tiredness, weakness, in-coordination and leg aches and all that has followed were somehow triggered by my exposure to statins, just like the hundreds of other cases in my files.
My total time on Lipitor was no more than five months at 5-10 mg dosing, low by today's standards. I had joined the ranks of thousands of other people whose physiology had been seriously compromised by statins.
Research evidence about the more serious side effects of statin drugs began to flood the internet. Statin induced mevalonate blockade with the consequences of CoQ10 and dolichol inhibition now was documented by research rather than just suspected.
Then mitochondrial mutations induced by statins began to be reported as the cause of increasing numbers of serious disabilities affecting neurons of the brain as well as causing muscle damage. Inhibition of CoQ10 was allowing free radical excess to mutate our mitochondria. The World Health Association reported excess ALS in statin users world-wide. A new word was coined, cerebromyopathies, and currently, reports of ALS associated with statin induced mitochondrial mutations are in the research news.
At the present time there is no way to prove statin etiology, just the large numbers that occur shortly after statins are started. Being based on mitochondrial mutations it does not go away when statins are stopped.
Cases are accumulating, more rapidly now that much higher dosing is used. We have no markers, no tumor mass, no blood level of a substance, no measurement that shouts "statins." My rheumatologist suggested ALS as the best fit diagnosis. She had already had my nerve and muscle conduction studies done, which were reported as within normal limits.
My neurologist generally agreed that ALS fit with my muscle atrophy and weakness and volunteered that he wondered about the mitochondria. He said he had been seeing much statin damage of this type and suspected mitochondrial mutations might have occurred. As a matter of fact he was thinking of specializing in just this area.
The more I thought about it the more I agreed with him. This had come up before many times in my reading. In fact many researchers think that mutations in our mitochondria are a primary factor in chronic disease and old age. Is it possible that statins were subtly damaging our mitochondria, producing premature aging and debility? The more I think about this the more worried I become. Right now that is the best explanation for the clinical picture that has emerged over the past decade.
At the present time my own case of Lipitor associated ALS has progressed to the point where I have finally had to give up my long daily walks. Because of my lifetime focus on muscle conditioning and regular exercise, I delayed this action much too long. Instead of conditioning my weakened muscles I was straining them far beyond their capacity.
The best way I can describe my reasoning is picture a muscle as made up of thousands of muscle fibrils. By now I had lost so many myofibrils that the remaining 30-40% of normal myofibrils were insufficient to move about a man of my stature. Just to get out of a chair and walk across the room was a major effort. Extra exercise is counterproductive, straining muscles already working as hard as they could.
I have begun the use of a cane for short trips. Recently, on my return trip from collecting the daily mail, a gray-haired neighbor lady came to her doorway as I walked past her driveway, concern written on her face, and she asked me if she could drive me home. My performance walking with a cane was that bad. My mood was black for the rest of the day; bless her heart! If I really concentrate I can walk a straight line.
I see my case as being primarily of the spinal muscle type and can imagine "ragged red myofibrils" in the muscle biopsy I have yet to have. I am not about to waste insurance dollars for expensive tests when there is so little proven help. I know what the diagnosis is. I have some 250 other statin victims in my repository just like me. If it looks like a horse, sounds like a horse and smells like a horse, it's a horse! And I believe Lipitor caused it but I can't prove it other than by the sheer numbers of victims walking this path.
November 2008 Update
I finally have had to stop my daily walks, a life long habit. Muscles in my legs and low back cannot be rehabilitated. I have just so many remaining functional muscle fibers and finally I have reached the point that just standing for a few minutes is all I can do.
I can follow my wife around with a grocery cart pretty good but without it I break into a cold sweat and look for a chair. My talks on statins are no longer on my feet before a chart or blackboard. I sit down just lke everyone else and it works well. Before the diagnosis was made I used to wonder why I was drenched in sweat at the end of my talks. Never occurred to me it might be ALS and that I was close to exhaustion.
I have never been exhausted before. My neurologist and I are both convinced the mechanism of action must be mitochondrial mutations. After all that's what statins do, they wipe out CoQ10 and glutathione, our primary anti-oxidant defense against free radical damage and mitochondrial mutation.
In addition to peripheral neuropathy, statin use in my case had somehow triggered a primary lateral sclerosis type of response (currently under neurological and genetic investigation) suggesting two completely different forms of statin neurological damage (nerve fiber versus neuronal.)As to my progressive muscle weakness I had to give up walking without assistance completely as being counter-productive. On the positive side I found a three wheel walker device which transfers weight bearing to my arms and shoulders so now I am walking again with much greater stability and co-ordination.
Three months have passed during which time I knew I had become a symbol of persistence to many others in this retirement community as I passed their homes each morning dutifully pushing my walker. Then to their surprise one morning I briskly walked my path using only a lightweight walking stick. My surprise was just as great as theirs for I had no idea my response to my new supplement plan would be so impressive. One month earlier I had started my new regimen of taking all of the supplements I had deemed essential to mitochondrial maintenance.
One thing my research had shown me was that of the many supplements that have been tested by various researchers studying mitochondrial health over the past decade, twelve clearly stood out. I know this can be argued indefinitely but from my perspective as a reasonably well-trained and well-informed MD, these twelve seem to be critical.
I had tried robust doses of CoQ10 both with and without selenium for a time, and glyconutrients and lecithin for half a year while participating in a study of their combined effectiveness on peripheral neuropathy with no significant effect on the process that was robbing me of strength and stability and turning my muscles to jelly, but I had never tried all twelve supplements together. Never for a moment did I think I could need all twelve critical supplements simultaneously, but how else to tell my need other than all at the same time?
I also convinced myself that ultimate dosage of each was not critical as long as some was being taken in. I completely understand that this can be grossly underdone and judgment was important. I also made once daily dosing of critical importance to me. In my conservative and traditional world, If there is anything worse than opening 12 supplement bottles daily, it was having to do it twice a day. I next mandated that all supplements requiring dissolving in liquid be done at the same time for convenience sake.
The rationale for use and dosage of each are discussed in the mitochonrial mutations chapter of my forthcoming book the Statin Damage Crisis. Everyone is different and everyone's needs are different.
At the end of one week I was seeing improvement. By the middle of the fourth week I ventured forth with my walking stick (for stability) and surprised my neighbors and that's where I am at present. I am highly motivated, perhaps more than most. I keep telling myself this is all placebo effect, knowing full well that this can be very powerful. But even my wife remarks on the new muscular look of my thighs and there seems no disputing my new energy. March 2nd 2009 was my 78th birthday and my vision of an imminent wheelchair existence has been replaced by hope of active life yet.
As a word of caution, yesterday my new freedom led me on a two-mile walk through a nearby abandoned orange grove where I stumbled and almost fell while crossing a drainage ditch. Pulled some muscle fibers in my upper back while I clung for support on my walking stick. Might have been better if I had fallen but please do not take on too much too soon. Your body is never the same as it used to be. Some things we just have to accept.
July 2009 Update
Despite my initial improvement gained from a battery of nutritional supplements permitting me to walk freely again, over the past several months it is clear that the strain of activity is gradually wearing me down. I recently traveled to Vermont but the immense effort required and the strains of travel took its toll and has set me back greatly. After almost a decade of studying the mechanisms of actions of the statins I am close to the end of my capabilities.
Actually, everything that needs be said about the statin drugs is on this website and in my books. There is now very little reason for my further input. I have written extensively about the side effect profile of statins. With the help of Frank Pfrieger we now know how necessary cholesterol is to cognitive function in our brains. The symptoms of amnesia, confusion, disorientation, forgetfulness and dementia are inevitable for many with statin exposure due to the inhibitory effects of statins on brain cholesterol.
That statins, also known as reductase inhibitors, also block the mevalonate pathway causing a wide range of side effects, including permanent neuropathy and myopathy, ALS and other neurodegenerative illnesses, heart failure, gross personality changes, loss of libido and far more is well documented in my material and fully referenced.
Finally my most important contribution has been to direct attention to the ability of statins to cause DNA damage. This action, like inhibition of brain cholesterol and mevalonate pathway inhibition is also inevitable for many - causing mitochondrial mutations creating both premature aging and the chronic diseases of the brain, nerve, muscle and bone common to aging. Statins are robbing many of us of our golden years, using the same physiologic mechanisms as normal aging. Suddenly within a few months victims become aged like me, diminished to the point where wheelchair existence is imminent.
Traditional medicine has nothing to offer. Nutritional supplements seem to be our only hope at present, using the full range known to be vital for mitochondrial function. CoQ10 is vital in prevention of statin damage but once the damage is done, all the CoQ10 in the world cannot by itself repair mitochondrial damage. The possibility of repair, it seems, can currently only come from the broad battery of nutritional supplements I mention in my book, the Statin Damage Crisis.
Now I have told you all I know. I have done my job. Please accept my apologies for being near 80 and "out of gas." Many doctors and other qualified people have taken up the banner and will guide you. I know of no better goodbye than what the Spanish have given us: Vaya con Dios - "Go with God".
July 2010 Update
Another year has passed and it is again time to tell you where I am on my path through life. It is interesting that you will not find my true diagnosis in the records of my annual astronaut physicals at Johnson Space Center, nor in the office records of my neurologist, or rheumatologist, or family doctor at my VA clinic.
I naturally have told each of them that a statin associated ALS-like degeneration is the best fit diagnosis yet nothing gets written down on my record. All the reasonable tests have been done and all are uninformative. All the doctors remain clearly skeptical as we "wrap up" the session. I am playing the role of doctor when I talk with them. I am not going to deny this for no one yet has my experience. I have daily email exposure to some of the many thousands of other cases.
My doctors know nothing about this subject of mitochondrial damage and the role of CoQ10. I cannot get through to them. They are unable to accept this extraordinary diagnosis yet it is staring them in the face and they can give no other best fit diagnosis. Certain tissues of my body are failing, slowly but surely.
I am no longer even half the man I was a year ago but I did manage an accomplishment this year of which I am proud - my paper, "LIPITOR®-ASSOCIATED MEMORY LOSS REPORTED TO MEDWATCH: IMPLICATIONS FOR AEROSPACE MEDICINE was accepted by the Aerospace Medical Association for their annual mid-May convention in Phoenix.
The poster presentation was perfect for my colleague, Dr. Fred Kelly, to attend the presentation in my place. Thousands of military and civilian physicians were in attendance. One in particular had wanted to discuss his personal case of Lipitor® associated permanent motor aphasia that he is preparing for a medical journal case report.
This paper of mine originated with my review of FDA Medwatch raw data of Lipitor® in the year 2007. For years I had been wondering why the transient global amnesia cases I had personally helped to electronically file with FDA's Medwatch had never been reported back to the medical community. Of the hundreds I had personally assisted, no word of even one had come back. By counting out this FDA raw data myself from 1998 until the end of 2006, I counted 662 cases of severe memory loss or transient global amnesia reports just sitting there with none reported back to the community doctors who could do something about this.
But this paper has bearing only on the cognitive side of the coin, the side relating to cholesterol insufficiency. When insufficient cholesterol is present in the body, memory formation becomes compromised and translates out clinically as memory failure, amnesia, confusion, forgetfulness, disorientation, and various depths of dementia.
This is only a relatively small part of the statin damage burden. Five years ago I can remember feeling fortunate that my only consequence of the bite of statins had been entirely cognitive in nature. Then slowly I realized that my progressive muscle weakness and pain and incoordination was this new thing of mitochondrial damage to my entire body. I was receiving excess oxidative damage to mitochondrial DNA. Imagine the burden of progressive failure of various tissues as the mutations pile up. This is the principle mechanism for muscle, nerve, heart and organ damage. Cholesterol inhibition is principle in memory failure but CoQ10 inhibition is principle in most of these other types of damage. In my opinion I had been hit by both.
Now I have had to give up on recreational walking for it is counterproductive. I have just been admitted to a hydro-therapy class where they will teach me aquatic measures for muscle maintenance that do not overly strain me. A light-weight walker suffices to get most places when a cane will not. All advice has been to stay away from a wheelchair because it is one-way only.
This all stirs memories of my role in space medicine, those of developing countermeasures for zero gravity deconditioning. That astronauts on the space station must use my cursed countermeasures for two hours each day date back to my research from fifty years ago. And now I am working with a group studying the use of water immersion to bring space station astronauts back like a baby in a womb. Somehow this seems all tied together.
March 2011 Update
Time for another update and this time I am somewhat confused because I am improving. Last week was my 80th birthday and after four years of a progressive downhill course, I am getting stronger. Once again my muscles feel like muscles instead of soft dough.
With the aid of my walker, I am back to walking slightly over one mile each day with no problems. I no longer feel that walking is counterproductive. I do not ache after walking as I did before and now when I return from walking I look forward to going out again.
My new family doctor is a gem, expertly balancing her needs with mine. She has put me on aggressive pain management so my aches and pains that seemed to be wearing me down no longer rule my life. Her water exercises kept me going six months ago when my physical capacity seemed at a minimum and walking definitely was counterproductive but then four months ago I felt better and went back to walking. She put me on depo-testosterone shots monthly to help muscle development.
My supplements this past six months have been CoQ10 400mg with liberal doses of tocotrienol (vitamin E), vitamin D and vitamin C and PQQ, a new anti-oxidant mitochondrial enhancer type of thing. I don't know what to say about PQQ except the promo made a great deal of sense. Promos are supposed to do that! Bottom line, I needed a straw to hang onto. So basically I am doing anti-oxidants, pain management and testosterone shots.
I have one more factor that possibly has made a contribution - that is the process of Earthing. Cardiologist Steven Sinatra introduced me to Earthing and it made sense immediately. I started grounding myself with use of a special grounding sheet in my bed just about six months ago. The mechanism of action of grounding appears to be that of neutralizing the positive ions of any inflammatory process with mother nature's free negative electrons. I had to assume my statin associated condition was associated with the usual inflammatory buildup of positive ions. Neutralizing this positive buildup with negative ions by grounding my bed and walking barefoot to maximize the entry of negative ions through the body seemed a reasonable course of action since nothing else was working.
By walking barefoot I have acquired no small number of comments from other seniors in this ultra conservative housing area. One in particular I will share with you. On this particular day I was wearing flowered casual pants while walking barefooted and an alert neighbor called my wife to warn her that I was out there walking about and "Was I all right?" We still are laughing over that one. I suppose the caller had read my book about my two episodes of statin associated transient amnesia and thought I might be having my third. I do not go out of my way to entertain my neighbors. This just happened and come to think of it you do not see many seniors in my area walking barefoot. Even at the beach they are quite apt to wear both shoes and socks.
I have to stress that my muscle aches and pains have been with me for a long time, primarily involving upper legs and lower back. Never did I think the muscle pain was caused by exercise. My original symptoms were pain and growing weakness whether I exercised or not. This is why my need for pain management. It has helped to keep me functional when my only alternative was to be an achy couch-potato. I seemed to have crossed a threshold of regaining mitochondrial function starting first with muscles. The pain possibly is neuropathic in origin and generally expected to be resistant to treatment.
I interpret this to mean my myopathy seems to be improving while any neuropathy is lagging behind, or may never improve. I have an impression the testosterone has helped but who knows? I have to add that my testosterone level was barely detectable. I did not recall my sexual history as all that bad but who knows what it might have been?
I still focus on mitochondrial damage as the cause and have to assume that mitochondrial genesis has occurred to account for my improvement. It all fits well with my understanding of the physiology involved. If this information is of help or gives hope to others out there I will feel amply rewarded.
July 2012 Update
There has been no change in my physical abilities from a year ago, but from the moment my doctor put me on pain management I have been a new man. The constant pain in my low back and legs has gone. I have been able to do more and be a better person. And because I feel better, I think clearer and write better. I think I may have some minimal amount of cognitive loss in that I need a bit more time to find just the right word or phrase during public speaking, but overall I feel mentally sharp.
My wife tells me I am more understandable now because my talking was much too rapid previously. Looking back I think I converse better in second gear. It allows me more time for eye contact and the natural body mannerisms so important to effective communication. This is not apparent in my writing which is as good as it ever was.
There are other pluses of aggressive pain management. I am now much more able to be involved in other projects. In the past year I have been the principle investigator in the making of a motivational video aimed at high school drop-outs and military recruitment. Additionally I am giving medical support to the honor flight program, reviewing each World War II veteran and their medical records, helping to give them their long deserved day of recognition in Washington D.C. Much more challenging has been my work with USAF flight surgeons researching the cause for the recent cognitive incidents among pilots flying F-22 Raptor aircraft.
In the past year I have acquired a Kindle® e-book reader which has made acquiring books and reading much easier and more pleasurable. I am involved in a couple of e-book projects myself along with the continuation of my writing for spacedoc.com. As for dietary supplements, I concentrate on CoQ10 these days as that is the supplement I believe that is truly of benefit to those of us damaged by statins.
February 2015 Update
Over the past few months I am improving, both in muscle strength and balance. My memory is better. I am even thinking seriously about giving talks again because of my new medicine combination which has permitted me to reduce my narcotic dosage 60% in the past month.
The magic medicine involved is cannabidiol - CBD for short with vapor pipe administraton clearly the method of choice. No tollerance, no side effects and no withdrawal. I expect to be off narcotics completely in another month.
The other most important things that have helped me are dolichols. As I explain in my website articles and books, dolichols are one of those substances collaterally damaged by statin use, along with CoQ10.
When statins block the mevalonate pathway, they inhibit the synthesis not only of cholesterol—what they were designed for—but also CoQ10 and dolichols (plus a few other vital biochemicals).
Recently I discovered a source of dolichol supplement, derived from the needles of the arctic fir. Years ago they wondered what gave these trees the ability to live and even thrive under conditions of minus 60 degrees Fahrenheit and six months with no sun. It proved to be dolichols, which in the human body are transformed into dolichol phosphate, the very substance we are missing after statin use.
It has been studied over the past two decades on patients with liver disease and Parkinsonism and the scientists working with it never realized its potential application to statin damaged people.
CoQ10 has been used for statin damaged people because that supplement has been available for years, but it only works sometimes and that is because other factors are involved in statin damage—like dolichols. The company making this product was delighted to send me a three month supply with instructions for proper use. By the end of the first month I could see improvement, more strength and better balance. After 6 weeks of dolichols I know I am not kidding myself. I walk and do short flights of stairs without my cane. I have not done that for at least a year. I am feeling very positive but there is yet one other factor - my Hypervibe. This exercise device has a vibrating base giving impact to your feet. Ten minutes on this thing gives the same effect on your body’s muscles and bones as walking two miles and you never move an inch.
I have been doing two ten-minute sessions at a setting giving 5G impact to my feet. I am talking with some of my NASA buddies about getting it put on the ISS as part of the exercise program. It will be a great addition because as an exercise device it is much better than the treadmill and bicycle ergometer for bones.
So what has caused my improvement? I think it is dolichols, mostly because that came first and I started showing improvement even before I began use of the Hypervibe, but it certainly seems to be speeding things up.