I'm new to the Group.

[MillionthVictim]

Hello!

I am new to the group and just discovered this impressive site. I will skip all the gory details for now about myself and simply summarize that, having ruled out virtually every other possible cause, I am convinced that about 5 years of pravastatin have left me with severely weakened, painful legs and an inability to roll my weight off my heels onto the balls of my feet such that getting up from a seated position is very difficult, standing still is painful, walking requires use of an Exerstrider/cane to try to shakily maintain my balance, and I can only walk short distances without a desperate search for a place to sit down. I am no athlete but I was very physically active before then.

I stopped the statins six months ago and started daily taking 600 mg Ubiquinol, 1000 mg Krill Oil and 500 mg L-Carnitine but have not noticed any significant improvement.

I notice that there have not been too many posts here lately, but I am wondering what the latest news is in finding any physical treatment or therapy which can reverse my damage. I know a little about the clinics at UCSD, Mayo, John Hopkins, etc. but have not read and before-and-after success stories. Are there any?

Also, I notice that many folks have varying supplements listed but no reports of significant improvements after taking them - can anyone report any successes from supplements.

Lastly, is there a current report from the member who was taking small does of Benedryl throughout the day?

In short, I think I've read and digested a lot about the bad news; is there any good news for us victims?

Your truly, MillionthVictim.

Thanks in advance for any help, advice or encouragement.

[David Staup]

M

I think you underestimate the number of victims that preceded you....chuckle

http://www.spacedoc.com/aging_mitochondrial_mutations

the above speaks to your question about your supplements and the fact that there is little but trial and observation to determine which are right for you.

for me I got noticeable improvements, long term and repeatable, from niacinamide, HIGH dose vitamin C, and to a lessor extent CoQ10.
Magnesium well actually all electrolytes and good (excessive for a normal person) hydration also are important.

many (the antioxidants) are prophylactic and some are for neuropathy which you don't appear to suffer from...


http://www.emdn-mitonet.co.uk/PDF/COHEN ... Adults.pdf

Another look at supplements and mitochondrial dysfunction...

I am working on getting the rights to distribute another excellent look at Mito dysfunction and supplements
should you want to purchase this resource it is here:


http://www.amazon.com/Oxidative-Stress- ... 1416051406

as for the low dose Benadryl...I am looking into possible alternatives that do not cross the blood brain barrier and your case would appear to be better suited to one of these possible alternatives.....maybe....in my mind a BIG maybe, bordering on probably not...but worth looking into.

I'll get back to you

David

[Nancy W]

Welcome MillionthVictim...Perhaps the best thing about spacedoc.com is to discover you are not alone...the scary part is how many people there must be out there who suffer due to statin use and have no idea why, or think it is just "old age." The scariest part, for me, when I think about people melting the cholesterol out of their bodies, is that they are melting it out of their brains. too. And since our brains are the consistency of pudding, the cholesterol in the glial cells provides what structure there is...So, hopefully, most of us here stopped before we totally melted our brains. I must say, at 64, I have my moments, and it is not lost on me that I took statins, if only for a short time both times. So, what is, appears to be what is...learning to live with the neuropathy I have, and staying healthy with eating Paleo, getting good sleep by following all the recommendations for sleep hygiene and taking Melatonin, taking the supplements I have found to be good for me, exercising, working on stress relief through meditation...But get me around a traditional MD (and I have been a traditional PT for 40 years, until I went alternative and started practicing craniosacral therapy) and I go on the warpath...my husband was in to see a cardiologist a few weeks ago. When he told the cardiologist he had had two bad experiences with statins, the cardiologist glibly suggested Red Yeast Rice. Wrong! I went off on him and he couldn't get out of that room fast enough. So, I suggest being on this site, that you cruise around and read what is interesting to you. I eventually ordered and read Dr. Graveline's, Dr. Sinatra's. and Dr. Kendrick's books. You won't get clear advice on exactly what to take or do, because it seems that one size does not fit all statin victims. I have been going to a good Naturopath, for the express purpose of his recommendations for being healthy...other than the statin damage to my nerves, I have never been healthier as a result...Good luck!

[lars999]

Hello and Welcome!!

My repeated conclusion from reading and posting on this board for some years is that there are no simple, for sure treatments, or even a single mechanism by which statins so damage many of us.

With hindsight, in my case I strongly suspect that one of the major factors in my decline from taking Lipitor is that it so greatly reduced my total cholestrol down to abot 140 from my lifetime normal of 275 +/- 25. After I quit Lipitor, my cholesterol went back up to normal for me. And my physical stamina and muscle strength greatly increased, although it has not returned to pre-Lipitor levels. I am now 73 and quit Liptor at age 70, after about 6 years on Lipitor. There are references scattered throughout this board to studies done correlating total cholesterol with longevity of older persons, with common result that less than 160 total cholesterol correlates with shorter expected years of residual life and higher total cholesterol (over 250 or so) correlating with extended life times. Persons in these studies were normally well past retirement ages. Cholesterol is needed for maintanence of so many essential body functions that too little of it, for a given individual, leads to malfunctions and those to earlier death.

In the early months after I quit Lipitor, Ubiquinol seemed to really help. However, during that time I was improving rapidly from the really low stamina levels Lipitor reduce me to that I really cannot separate effects of quiting Lipitor from those resulting from Ubiquinol.

There is one difference between my situation and yours. I had been very physically active until Lipitor made that impossible, much of that was aerobic activity, such as cross country skiing in mountains of Colorado, USA. Once I had recovered from Lipitor enough to return to controlled workouts, I was able to achieve steady improvements for almost a year. I could demonstrate for my self that, with extended (15-30 minutes ) aerobic exercise at altitudes of 9000-11000 feet, both Ubiquinol and A-carnatine increased my performance and stamina, but only clearly for first year, iffy for second year and not at all for third year. However, I could only demonstrate this benefit when doing aerobic activities. Sitting around at home, driving car, etc., etc. there was no demonstratible benefit. I still take Ubiquinol during ski season or when doing any activity requiring sustained effort. I also take a gram of vitamin C daily. This summer we spent 64 days touring Island, Norway, and Sweden, mostly sharing the daily driving. We both held up quite well, whereas, a much less strenuous trip to Sweden when I was still on Lipitor, but did not understand that it was Lipitor that was the culprit, left me unable to do even modest strolls in town, or to drive an auto for more than a couple of hours -- which greatly reduced value of that trip for us.

Best wishes,
Lars

[lars999]

Forgot to add, I was about as drastically reduced in my ability to walk as you describe. I also lost and have yet to recover, the ability to easily get up from a sitting possition -- this has greatly decreased my ability to use ski lifts and downhill ski areas, to point that I may not be able to do any lift-served downhill skiing this fall and winter. BUMMER!!

Lars

[Nancy W]

Lars,
I concur with the first-year improvement...and that I was able to mostly overcome the tremendous fatigue using Ubiquinol and some of the other supplements. It has been enough years now that I forget some of how I felt before statins. If I work steadily on increasing exercise, I have increased exercise tolerance, but twice in the last ten months, I got sick, once with two months of bronchitis, and once with a different virus. Each time, my stamina was knocked way down and recovery has been slow. Before the bronchitis, I was in the UK minding my grandchildren for a month. No car, four young kids, walking everywhere, save for train trips into downtown London from Wimbledon. I was walking up to 5 miles a day, often lugging groceries, or pushing ids in a stroller, or sometimes pushing one in a stroller, and one on a scooter. By the end of the time I was there, I felt great! But 8 months after the bronchitis, I have yet to get back to that level of stamina.

When I was closer to the statin insult, four years ago, I often perceived that my tendons felt as if they were "fraying or ripping off" their origin, or insertion. I remember reading here about statin-related tendonitis, or tendonosis. That still happens. For instance, I was walking recently, with a new pair of those shoes that have places for each toe. No raised hell at all. I went about a mile and I felt as if my hamstrings were pulling off my ischial tuberosities (sit bones). And even worse, in June, I must of injured some of the tendons in my shoulder, it is not a classic rotator cuff, tear, but appears to be the anterior deltoid, the bicepital tendon and part of the pectorals. I do not have a true frozen shoulder, but the range is very painful in places, and, just when I seem to have increased the range, I will make a movement, say putting my phone in my back pocket on that side, and a sudden tearing sensation rips along the insertions...so last night I did more reading on statin-related tendon damage. Most articles that I read talk about the tendon damage occurring during the time on statins.

When I think about the overall changes I have had since the statins, I just wonder about the long-term effects. Have you read any good literature on long term effects? Like what the mechanism is?

[lars999]

Nancy,

I too had various problems, including some complete rips, with tendons while on Lipitor, as well as continued problems since then. Like your experience, I sometimes/often find that I have sensitive points of tendon attachment. Like you they often express themselves very pointedly when I do specific, "ordinary" motions. Some of these situations have been with tendons that suffered injury long ago, others have been with tendons that had never given trouble or been injured. Often, there was no obvious cause/relation to what I had been doing. The amount of effort being exerted when an attachment point would suffer damage was sometimes quite low, well withing the range of daily, mild physical effort. THAT is a very bothersome situation for someone that has been accoustomed to strenuous physical exercise all their life!!! The worst cases were in the early years of taking Lipitor-- then I became very cautious about any activity that was physically stressfull, least I rip still another ligament or aggrivate again a previously damaged attachment ligament. I remain VERY careful and deliberate in my physical exertations, even most everyday movements.

In last year or two I have been reading very little about statin damage, having lots of other things that needed attention. Today I received one of Duane Graveline's most informative newsletters. I will be reading Finnish genetic study he reports -- Finns strike again!!

Glad to hear that others are getting past the nasty damage that statins cause, even though recovery is not as problem-free as one could hope.

Lars

[Fernb]

I just wanted to chime in. After 2 years I have made a fairly good mental recovery. Although I have to admit I still get easily confused and very emotional. As far as the pain, it is better. I still have to use a cane if I have to walk far, or over uneven ground. I am taking some physical therapy and it has helped some, but as several have mentioned and my therapist noticed, I still have a very hard time standing from a sitting position, and am very shaky and tire easily when I walk. I have yet to find one single Dr who believes Statins cause this kind of damage. With every new Dr I have them mark that I am allergic to Statins. Not one single one has inquired about what happened, but only one has tried to get me to take something for that "out of control" cholesterol. I told her I would just take my chances.

[David Staup]

M

I'm waiting for a response from you...
it helps when you interact...I, for one, must limit the use of my hands and find it much easier to answer specific questions rather than outline MY specific timeline of improvements and methods. too much typing

I will confirm Nancy's comment on stamina. Slow improvement is the only way and I experience a very rapid loss of stamina anytime I cannot follow my "routine" for more than a day or two.
I still crash occasionally, and even though it now takes, at most, 4 days to recover, I lose much of my stamina and it takes weeks to recover that because trying too hard leads only to another crash.

David