Another Lipitor Victim In Rehab.

[lars999]

Hello!!

This is my first post to this forum, although I have been benifiting greatly from *www.spacedoc.net, including this forrm, *www.thincs.org, San Diego Statin Study, etc. for past 5 months.

On 10 June 2010 I quit Lipitor because it was turning me into a badly degraded old man, well before I was going to get there naturally. I am 70 and was feeling like 99, going on dead.

While life has greatly improved since guiting Lipitor, I am still plagued by seriously disfunctional left arm, with muscle weakness, muscle and ligament pain. There remains some data mining of previous threads here, however, it seems that what actually works can be very specific to individual. SO, perhaps some guidance from fellow victims could be productive. Thanks!!

What I am doing currently is as follows:
1) CoQ10 suppliment (100mg 3X/day).
2) Omega-3 enriched fish oil (1200mg, 360mg Omega-3s 3X/day).
3) A Homocysteine Blocker (vitamins B6, B12 and folic acid 3X/day).
4) Acetyl-L--Carnitine (500 mg, 2-3Xday).
5) Strength training with free weights and machines (3-5X/week).
6) Aerobic exercise (2-4X week, @130 bpm, 30-90 min duration).
7) Coconut oil, cream or milk as energy source before workouts.
8) Low carb, high sat. fat, high protein diet -- similar to Zone Diet.
FYI: I had to increase the CoQ10 and fish oil from 2X to 3X daily to see a clear effect in energy. Acetyl-L-Carnitine intake correlates with decreasing pain in muscles and ligaments of left arm, as well as increased muscle mass and strength.

I will soon be undergoing a doppler and blood-pressure cuff study of right leg to determine if I have reduced circulation that is cause of recent frequent pains in calf muscle. Alternative explanation is damage from Lipitor .

Following above test, I expect to undergo a full-blown treadmill cardiac stress test to determine if I have residual damage to heart muscles. Given degree of weakening of skeletal muscles by Lipitor, it is reasonable to be concerned about similar weaking of heart muscles, leading to congestive heart failure. Hopefully, any such damage is now repaired and I will be able to proceed to more intensive aerobic workouts, leading to max practical heart rates of 160 or so bpm (my life-long standard for cross country skiing, etc.).

FYI: 30+ cross country ski trips this past ski season is likely cause of much worsened Lipitor side effects, leading to quiting Lipitor on 10 June 2010. Good old excercise intolerance!!

Thank you,
Lars

[lars999]

This is an update to my initial post above. I am soon 5 months off Lipitor.

I have added Vitamin C, 500 mg X 4 to 6 per day and Vitamin D3, 1000IU X 6 per day.

I have not felt so consistantly good in years!! Stamina has remained at a much improved level and shows little flucuation from day to day.

Much improved performance with badly Lipitor-damaged left arm. Tricepts muscle strength and stamina in weight lifting are approching that of right arm but both are well down from only two years ago. Deltoid muscle in left arm remains much decreased in size and strength and still has little endurance, although it is finally starting to respond to light workouts.

Most recent good news is that I can now jog small fractions (1/8, 3/16, 1/4) of a mile at 4,5 mph. Not too long ago I could only walk on treadmill for 1,0 mile at 2,0 mph. Finally got that up to 3,0 - 3,9 mph and 3,0 miles per session. BIG difference in effort required to jog at 4,5 mph, compared to walking at 3,9 mph!!! For recent weeks, I am experincing the kinds of muscle "sensations" in calf muscles that I long ago learned to associate with increased conditioning and associated growth of new capillary blood vessels. Now that I am able to jog these diddly short distanes, my old Lipitor-caused muscle pains in right calf are back intermittenly.

The really nice thing about these recent improvements in muscle performance is that they have been steadily increasing small amounts with each workout session. This is strikingly different from about two years ago, when muscle performance was steadily decreasing with even moderate workouts. With hindsight, I now understand that these decreases were result of Lipitor damage to my mitochondria. With hindsight, this puzzling decrease in physical performance was a forewarning of the major adverse effects this past spring.

I am trying to finally, three weeks later, to pry out of my cardiologist, the results of dopplar and blood pressure measurements on femoral arteries of my legs. These tests were to sort out two possible problems: 1) deep thrombosis in right calf muscle, vs 2) Lipitor muscle damage. From watching the tests and chatting with operator, there seems to be little, if any thrombosis. Also, with any significant thrombosis, my improvements on treadmill performance, especially jogging, would not have been expected.

It is really nice to no longer need a cane for more than short walks!!

I am also noticing apparent improvements in such unexpected things as retinal performance of my badly glaukoma-degraded right eye. Later this week I may get this checked via visual-field tests. My presumption is that this is result of glaukoma-damaged (but not killed) retinal cells having undergone repair, perhaps via higher cholesterol concentration and/or better function of mitochondria. Praktikal effect is that I now see colors as brightly with right eye as with left eye. Previously, colors were quite "faded" as seen with right eye.

Sometime in coming months, I intend to have blood serium concentrations measured for such things as; Vitamin-D, testosteron, homosystein, total inflammation, perhaps also CoQ10, L-carnitin, and VAP cholesterol particle type spectrum. I might even have the usual "lipid panel" stuff measured, mostly for laughs.

Now, I am begining to wonder if all this attention to health of my mitochondria can be transitioned from a rescue effort to a "fountain of youth" effort. At least get myself from 70 down to 55 functional age, that is, IF I make it back to 70.

Best wishes to all of you for similar steady improvements!!

And a big thanks to Drs. Duane Graveline, Uffe Ravenskov, Beatrice Golumb, Kilmer McCully, Linus Pauling, and all the many others!!

Lars

[lars999]

Trying to get back into jogging is emphasizing one of Dr. Myhill's points about managing Chronic Fatige Syndrom, learn to pace yourself, least you set yourself back by overstressing what your mitochondria can do, apparently reversing some of the repair your treatment regime has accomplished.

I will describe what I am doing on the off chance that someone else will benifit from the mindset and process that I find myself doing once again, almost 20 years since I was last able to jog at all. Fun things like Morton's Neuroma and tarsal tunnel syndrome/collapsing arch in right foot, contrary pyroformus muscle in right pelvus, and lazy multifidi muscles on lower right spine all ganged up on me. One by one they were put back into acceptable working order. And then came Lipitor and all attempts to jog again came to naught!! It is SO NICE to be dealing with an "old friend", physical conditioning, again and not this pack of breakdowns.

I am doing my walking and jogging on a treadmill that allows me to set tilt of running/walking platform, speed of treadmill and measure my pulse rate at will (so long as speed is below 4,0 mph). All of this makes it easy to repeat a given level of effort and to monitor one's pulse rate. I use all of these to establish a reproducable level of performance and to back off when I am seeing higher heart rate than I want. If all is not going well, I back off, sometimes even quiting. So far this careful pacing has resulted in steady, small improvements each session (basically every day).

One also has to listen carefully to one's body parts. This is fairly easy for those of us that were once avid runners and cross country skiers. Without this skill, one suffers constant overuse problems and injuries.

I find myself searching for a combination of platform tilt and treadmill speed that lets me jog with minimum complaints from my legs. Tilt angle was easy and I quickly settled on 3 degrees. Finding a most comfortable speed is getting me back into an old problem -- that is, getting to a smooth speed that I can maintain at my present level of physical conditioning, at same time as trying to increase my physical conditioning. At 3,9 mph my leg muscles could not sustain jogging for more than a few minutes -- too slow. 4,5 mph was much better and good for a few 1/8 mile segments, but now I have to move up to 4,8 mph in search of a better level of comfort. And this drives my heart rate up faster, so less distance before current max acceptable heart rate is met. I do not know where this delicate pacing will finally plateau, but, if 20 years ago is still a valid guide, it will do so between 5,0 and 6,0 mph. I expect this to take weeks, maybe longer.

So long as I can maintain these small, steady improvements I will be happy. Thanks to such a nice treadmill I expect to be able to acheive this. Without this level of control, I fear my recovery would be iffy and frequent setbacks common.

Soon I will be looking for a nice heart rate monitor that I can wear when ski season opens. Way too easy to get into skiing and overdo it.

Hope this is of some value to someone here.
Lars

[cjbrooksjc]

Lars: As a (now) rare return visitor to the site, I have to say your posts here were, and are, what makes the site so valuable. I plateaued in my recovery some time ago, but your post energizes me once again to continue my regimen. This is an insidious affliction and melancholy is one of the most debilitating side effects. Thanks for posting.

Best,

Brooks

[lars999]

Thanks Brooks for the kind comments!! I have benifited lots from this website and this forum, so, seems only right that I should feed something back to it. In any case, what you see from me here is typical of what I do on many Internet boards on subjects I am interested in.

Back to purpose of this thread. Today I finally got call from cardiologist re results of my "leg study", that is of the femoral artery and its branches in both of my legs. In summary, they report very mild plaque in these arteries in calves of both legs -- nothing to affect blood flow to either leg. With hindsight, I shoulda made a bet with cardiologist about what they will find -- but I almost never win actual bets ... SO.......

AND, guess what? He started talking about putting me on "cholesterol medicin" to "clean up the plaque", yea right. Then he stopped abruptly and said "You gotta be sure to stay on your diet and exercise!" Interpretation: He recalled or noticed that I am "absolutely NOT to be perscribed ANY statin drug!" Smart guy!

He did promise to send me copy of report, even to provide the Doppler, etc. data on a CD. Now I get to do my own interpretation!!

Middle of November is cardio stress test. This is test I really want to see results from. Hope I have no problem getting them to push stress to at least 160 bpm. 15 years ago I easily went to 180+ -- fear those days are gone for good.

I did find a nice heart monitor, made my Polar, Polar FT1 model. Costs $60 on REI Online Store (www.rei.com). Little monitor looks like a wristwatch with large digits giving heart rate and band around chest contains heart beat monitor. Simplest version available -- does what I want and has no extra bells and whistles.

Some ski areas are already open here. One I have season passes for should open sometime in late November. Looking forward to trading that treadmill for a bunch of snow on hills!!

Off to treadmill again,
Lars

[lars999]

Nothing to report on statin-damage front today.

However, had rewarding meeting with my eye doctor today. Learned that inflammation is increasingly considered a major, maybe even most important, underlying cause of degeneration of retinal cells, leading to deterioration of retinas. Treatment is omega-3 rich fish oil, antioxidants, vitamins. Sound familier?

This is handy explanation for why corrected eyesight in right eye, which has extensively damaged retina (part is totally dead because of ruptured blood vessels), is now 20/25 vs 20/40 to 20/50 previously. This improvement is logically because wrinkled central part of retina is now much less wrinkled.

This also provides a partial explanation for why I now see colors equally brightly with glaukoma-damaged retina of right eye as with non-damaged retina of left eye. Previously, colors were faded, as seen by right eye. One can reasonably invoke higher cholesterol, allowing better repair of glaukoma-damaged (but not killed) optical nerve fibers in right eye -- thanks of course, to no more Lipitor. Down with Lipitor!!

More positive consequences of improved function of mitochondria? Yes, I think so.

To happy mitochondria!!
Lars

PS: Looked today - 29 Okt 2010 - for some links where inflammation and glaucoma are discussed. Here is one, although I am not at all certain that this is describing same situations as my eye doctor was referring to. I did not find any other articles that seemed especially relevant to this post.

1) http://www.retinalphysician.com/article.aspx?article=101006
TITLE: Diagnosis and Treatment of Comorbid Uveitis and Glaucoma

This article does not discuss use of omega-3 rich fish oil, etc. but does clearly state that "standard treatment" with corticostearoids is less than totally satisfactory treatment. This article is pretty rich in medical jargon.

[lars999]

Today has been another day with very measurable improvements in muscle strength and aerobic stamina. I am now, finally, 5 months after quitting Lipitor, feeling like I am progressing in a normal manner, with minimally apparent residual, exercise intolerance effects from Lipitor.

FINALLY! my most stubborn muscle pains and weakness in upper left arm are abating!!! From being unable to do certain standard upper arm and shoulder excercises only a couple of weeks ago, I have moved on to 10 lbs resistance and now to 20 lbs for 10 reps on two consequtive days. Still a long ways from by previous 40-50 lbs, which was limited by an old shoulder injury. This improvement came rapidly, finally!!

One other set of upper body muscles have now improved from 50 lbs X 10 reps, where things were stuck for months, to 100 lbs X10 reps on two consequtive days. This improvement also came rapidly, finally!!

Getting good aerobic fitness for jogging is my main focus these three weeks. Last week the goal was 0,50 mile jogging in 1/8 mile increments at 4,5 mph for each of 5 days, which was met. This week's goal is 0,75 miles in 1/4 mile increments, which has gone well first two days. Next week's goal is 1,0 miles in 1/4 mile increments for at least 3 days. Late next week I have cardio stress test on treadmill. My minimum goal is to pass (with normal heart performance) at 160 beats per min, max is 180 beats per min. I have been pushing my aerobic workouts to mid 150s beats per min with no adverse effects felt. These improvements came, finally, after weeks and weeks of "strolling" on the treadmill.

Hopefully, after the cardio stress test, I can move on to jogging at 5,5 mph or so, where my legs do not hurt, for 1,0 or more miles. Not been able to do that since 1997, when I got Morton's Neuroma in right foot -- real fun way to put an end to your jogging!! Lipitor squashed all subsequent attempts to get back into aerobic exercise.

Where I workout, I can look out at newly snow-covered Rocky Mountains where I want to go skiing soon. Gym is at 5.000 feet, skiing is at 10.000 +/- 300 feet on the Nordic trails, with some downhill runs several 100s of feet higher. I wanna go skiing with cardiologist's approval, limited only by my physical stamina and skiing skill. NO MORE WIMPY old man skiing, like last year!!

Hopefully, each of you will find your improvements following much the same pattern as mine, with "sudden" improvement accompanied by large decreases in muscle pain, weakness and exercise intolerance from the statin(s) you took.

Best Wishes to Each Of You,
Lars

[lars999]

Got out this weekend for my first taste of hiking in "mountains" since quitting Lipitor. I can do it again, sort of. We took a stroll up and back down a 428 foot "pimple" on a rather gently sloping trail. I did it at my more or less "normal" pace -- good. Bad -- I really was not good for much more and had to walk last 200 meters or so with cane.

SO, gonna hafta wait a while before I can again do 3000-4000 feet vertical and down again.

Damn Lipitor!!

Lars

[lars999]

Sometimes going to workout has quite unexpected results. Today was one of those days. Today I decided to try a Roman Chair instead of my usual abs workout. Just a few reps into it I heard a "snap, crackle and pop, followed by a distinct "rriiipppp" in my left shoulder joint.

Not to hold you in suspense, appears that shoulder joint of my recently dysfunctional upper left arm had developed an "adhesion" that was limiting drastically what I could do with that arm --- that nice "rriippp" appears to have been the demise of that problem. Now I have much greater range of easy motion with left shoulder!!!!

Hopefully this seemingly happy event will prove to be a big plus in regaining strength and control in my left arm. Perhaps this is underlying reason that stretches of this shoulder-upper arm have been of such short-lived effect.

When will these "wonderous" adverse effects of Lipitor ever cease? Previously I have understood "adhesions" in joints to be something associated with immobilization of injured or operated joints.

Lars

[lars999]

Just got home from treadmill cardiac stress test. I did talk them into running test up to 160 bpm (105% of max heart rate for my age), which I did easily. I was pronounced "normal" in all respects cardiological.

Now I still gotta get all the Lipitor-buggered body parts back to normal function -- if I can. Long ways to go.

Lars

[Allen1]

Good to see some improvement Lars

Its getting cold here in the UK and I am finding things getting worse as the temperature drops. Things had sort of stabilized to a degree pain-wise when it was warmer but it looks like most things are just waiting to pounce back with a vengeance

I wonder if the cold is affecting anyone else in this way or is it just me getting run down health wise

Good luck with your improvements but don't overdo things

[lars999]

Allen,

I sure feel the cold in those muscles and joints that were affected by Lipitor. Especially when they are exposed to cold air for even a few minutes. I used to be someone that really enjoyed nice cool air -- now I gotta put on plenty of warm clothes. I am also feeling the effects of being in a closed house with cat. Plus, this is time of year that I usually get dragged down with some stray bug or two.

Still, I feel better than I have in years, thanks mostly to Lipitor having drug me down so much that all the most welcome recovery successes are really noticable. Perhaps this is because of daily eating 2-3 grams of vitamin C, 6000 IUs of D3, as well as vitamins B6, B12 and follic acid. Perhaps because my daily exercise routine is giving me improvements in stamina, etc. Also, to all appearances my mitrochondria are functioning much better. But, I have fond memories of feeling much better, having much better stamina, etc. -- and not so many years ago, before Lipitor.

However, I am getting feeling that my progress in exercises is on plateau for some muscles, leg muscles especially. This may just be the normal plateauing that happens while more capillary blood vessels are growing. Maybe I have been pushing the limits a bit too much with these muscles. In any case, they are getting rest for a few days, now that cardio stress test is over.

I am still improving steadily with arm and shoulder muscles. I also had most remaining room for improvement with arms and shoulders. These are still keeping me from some of my once favorate activities.

Improvements in aerobic capacity are not increasing at rate I would like. I do not understand this and have not yet made any attempts to do so. This may be my next hurdle.

Lars

[David Staup]

cold and heat stress is hard on those with mito based dysfunction. the mitochondria produce body heat when needed by allowing the process that recycles ATP (oxy/phos) to short circuit to produce heat. so much energy to make heat and not to recycle adp into atp.

do every thing you can to stay warm

for me the stress starts at about 70 degrees, by that time I'm already in flannel and long sleves. at 60 the long underware come out and not long after that an electric blanket, a heating pad, or both are used to stay warm during the day.

I estimate that my ability to sustain activity is reduced by 30-40% in the winther. sucks but I never really liked cold weather any way.

[Allen1]

Thanks for the replies Lars and David,

it looks like we are all going to be controlled and limited by the temperature. I was starting to be able to actually repair some of my friends computers and the likes, even changed a few capacitors on a couple of motherboards, now though I am really struggling just to write this. I know that my physical strength/stamina has been short lived over the last few years but at least my mind was starting to wake up and some of the physical aches got a bit easier over the recent months apart from things like the arthritis in my big toes etc.

I used to love the cold weather and in my earlier years I worked on building sites and in demolition, I was even a bin man for a year and a half, no wheely bins back then and we had to carry the bins on our shoulders, this was when they were full of coal ashes etc. Nowadays, I couldn't even pick up an empty bin and that has nothing to do with getting older.

Keeping warm as you both mention seems to be key, its crazy the way statins have influenced our lives, a few years ago I would have to be dragged out of my shed to come into the house, now I have a bigger workshop in its place and I rarely come out of the house unless I absolutely have to for appointments or shopping. Bl**dy Statins!

With a bit of luck, this time next year things could have improved, being realistic though, I think this is as good as it is going to get fo myself.


Lars,

I hope your plateau hasn't quite been reached and you still manage to improve some more.

Dave,

in the UK we are quite frankly in a right mess with the newest idiots in charge ie the government, apart from the serious damage they are trying to enforce on our welfare benefits which are dire, take a look at this (its not a joke either).

*http://www.guardian.co.uk/politics/2010/nov/12/mcdonalds-pepsico-help-health-policy

[lars999]

Gads David! That is really disgusting!! 1984 will arrive, just a few decades later than George Orwell thought!!

I went looking yesterday for information about decline in aerobic capacity with age and found the following.
(Circulation. 2005;112:674-682.)
© 2005 American Heart Association, Inc.
Exercise Physiology
Accelerated Longitudinal Decline of Aerobic Capacity in Healthy Older Adults
by Jerome L. Fleg and a bunch of other folks. Google title to get link. This is kinda a "Read it and weep" article.

This study shows that I likely have suffered a 20% or so decline in aerobic capacity since my peak at age 55 and can expect another 20% or so twixt 70 (my present age) and 80. That is, unless I manage an effective "Well aged Superman" recovery program.

What I will be looking for now is a nicely done research that shows the effect of biochemicals like CoQ10, Acetyl-L-Carnitine, etc. of aerobic capacity in us well aged folks.

The above mentioned decline in aerobic capacity is another excellent candidate cause for my current plateauing of performance with legs.

On a brighter note, yesterday I was able to again play the nyckelharpa (an old, old Swedish stringed instrument, see www.nyckelharpa.org) for a bit, at least long enough to recover 4 of my favorate tunes. My Lipitor-buggered left arm had put a solid hold this. This is not a 100% success, I am still limited by how long I can play, which I hope to increase by devious tactics, such as a support sling for my left arm. Crafty old man syndrome sorta thing.

One nice thing about cross country skiing is that it does keep one's body temperature up nicely. SNOW; SNOW; SNOW!!!

Lars

[lars999]

We rigged a cheater sling for my left arm today. Now I can play nyckelharpa without suffering a very painful and sore to touch tricepts muscle in left arm within a few minutes. Got 7 of my favorate tunes back today. These are tunes I play from memory, so, at least some parts of my brain are OK.

Now Stina and I can do one of our together activities again!!! NICE!!

Lars

[Allen1]

Blimey Lars,

those nyckelharpa's wouldn't look out of place on star trek being played by a Klingon.or some other race. I had never seen or known about such an instrument till now. Good luck with your playing but I bet is will be painful using the levers/hammers after a short while with your left arm so take it easy

[lars999]

Allen,

Nyckelharpas do draw a lot of attention in public, maybe not quite as much as they would with a Klingon playing them. The earliest evidence we have of nyckleharpa is 1350, on decorative carving on top of a support pillar in a stone church on island of Gotland, off east coast of Sweden. The support pillar was part of upgrading that church in 1350.

This was during time Gotland was location of nothernmost Hanse League city. Given all the cutting edge technology the Hanse Leage introduced, fostered, etc., perhaps it should not be surprising that such a musical instrument originated from that culture.

Sweden did not begin to "exist" as a state till in 1500s. Many Swedish churches from 1500s-1600s have paintings on ceilings depicting angels playing nyckelharpas. Being an angel then was an equal opportunity profession -- both male and female angels are depicted. FYI, these same paintings often depict fiddles being played by black, horned and hoved creatures with long tails ending in spear points.

Those "levers/hammers" are actually keys (nycklar in swedish -- nyckleharpas are often called "keyed fiddles in English) that one pushes in to shorten the playing strings, producing notes of higher frequency. The playing strings are brought into vibration with a short bow. The tone quality is enhanced with 12 resonance strings, each tuned to a different frequency. The early nyckelharpas had lessor number of playing and resonace strings and were smaller -- they sound quite different. Over 100s of years, nyckelharpas underwent a lot of changes and improvements, with the current, modern, fully chromatic version appearing in 1930s-1940s.

The problem I have with left arm is that static stress of holding it in playing position results in increasingly strong pain in part of tricepts, hence the sling that reduces that stress. Still, I cannot play for very long -- 2-3 tunes played with full number of repeats of different parts is my current limit. Happily, my right arm is in excellent condition for bowing and getting nice tones. Way better than not being able to play at all!!

Lars

[Allen1]

Hi there Lars,

its amazing that the nyckleharpa has been around for as long and yet so little is known about it to people like myself. I suppose its a little like the Northumberland bag pipes which were relatively unheard of too, I live in Northumberland and only heard of those on the TV when someone played them

I don't think that us lot in the UK are going to get any satisfaction about any serious problems like controlling the prescribing of things like statins or any other measures to ensure the safety of the populace, why do I think this way you may ask, well every day the new government come up with another idea to make our lives that much better ie today's is:-

PLEASE SWALLOW ANY DRINK OR FOOD BEFORE READING

*http://www.guardian.co.uk/lifeandstyle/2010/nov/14/happiness-index-britain-national-mood?showallcomments=true#comment-fold

[lars999]

Like a lot of other old musical instruments the world over, the nyckelharpa never spread far from its place of origin in the Uppland area of Sweden and its use had pretty much died out in 1800s. It was always a purely folk instrument, save, perhaps for the few instances of use in churches. It was sorta saved from oblivion by Skansen (the big open air musuem of Swedish culture in Stockholm) many decades ago. However, it was a very proactive musical genius, Eric Sahlström, that also was a great popularizer, that created the chromatic (can play tunes in all keys) version and popularized it widely in Sweden. In recent years, nyckelharpa has become Sweden's national musical instrument. There are well over 10.000 of the chromatic nyckelharpa in Sweden today, with perhaps 500-600 in USA and lesser numbers in other countries, including Japan. In recent decade or so, it has been used by a few players of classical music, often in combination with other old instruments, harpsichord, for example.

Thanks for warning about finishing food and drink. I had just finished when I read your post -- that was close!!

One of the comments captured my initial reaction very well ..."Maybe we could just switch the union jack for a smiley and put prozac in the water?"

Mind boggling!! An annual happiness report, statistically derived, and a budget for happiness!! What could be next? Criminalization of unhappiness?
Lars