Lipitor NIGHTMARE

[gates]

My husband is now disabled from Lipitor,,he was taking 40mg for one year. We have been shuffled from one dr. to the next. He has EVERY SYMPTOM OF STATIN DRUG DAMAGE . We've been on spacedoc.net since 8/16/2009 almost daily,,first time to write though,,,I would like some feedback about Cleveland Clinic and Mayo Clinic.,,,,I'm certain the damage is permanent,,but I would like to know if it has triggered a neuromuscular disorder,,spinal muscular atrophy,,( his nephew was born with that ) or someother disease or disorder,,or is it all damage from LIPITOR,,,,thank you for replying

[David Staup]

Gates,

Dear we are all so sorry to hear about your husband! when did he stop the statin what are his symptoms and is he taking the suppliments?

many people recover to a greater or lessor extent and it can take up to several years to know for sure....

with that said statins often cause mitochondrial mutations which result in long term mitochondrial disorders... one of the countries best experts on mitochondrial disorders is at the cleveland clinic a doctor Cohen...his office number is 216-444-9182 I believe.

where do you live in Indiana I may be able to locate a doctor familiar with mito disorders closer
who can get you started

[gates]

David,,I replied but don't see the post now,,,I'm new to this,,,I'll write again tomorrow...His muscle biopsy shows Type ll muscle fiber atrophy,,,which is caused by a variety of disorders and can be drug induced,,,,

[David Staup]

Gates,

I looked into Type ll muscle fiber atrophy and think it's probably one of my original problems, so a few questions:

has your husband lost weight?
has his thyroid been tested?
has his adrenal gland been tested?
have his levels of testosterone been checked?

you can evaluate the thyroid and adrenal glands at home with simple temperature monitoring see this link:

"http://www.stopthethyroidmadness.com/temperature/


the other possible cause (associated with statin damage) is Myasthenia gravis:
The hallmark of myasthenia gravis is fatiguability. Muscles become progressively weaker during periods of activity and improve after periods of rest. Muscles that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are especially susceptible. The muscles that control breathing and neck and limb movements can also be affected. Often the physical examination is within normal limits

If you could outline some of his major symptoms we can tell what has helped for us (many have recovered to some extent)

David

[gates]

Hello David,,,when husband can get up,,I'm sure he'll be writing instead of me,,,it's great communicating with people who understand,,,,so first off,,,my husband has gained 55lb.,,,,a blood test in Oct. showed high thyroid but in Dec. showed normal.. I don't think there has been a test of adrenals,,,,I have adrenal fatique and had to do the saliva test to find that out,,,he's not had that,,also no one has mentioned the hormone levels..not saying that blood wasn't checked ,,but no one has mentioned either one. He had a tilt table test done today,,,because of vertigo and blackout episodes,,headaches,,and so forth. He is also now on oxygen all the time since Dec.,,,from Sept.--Dec. it was just at night....But good news,,,he had an episode on the tilt table,,,,,they found the VAGUS Nerve is messed up...that's all the tech would tell me,,,said she wasn't a dr.,,but test showed abnormal function,,no function or too much function,,somethings not right..I haven't had that much time to study in depth,,but know it controls mouth, tongue,,voicebox,,swallowing,,lungs,,heart,,and intestines...I was just glancing over sites and did see,,,,,,,,,,,,,MITOCHONDRIAL !!!!!!!,,,,,,,imagine that!! Now about his symptoms,,,,,,constant muscle ache pain and weakness,,,he can walk 100 ft on a day when muscles aren't as bad,,,,he used to swing a 50lb sledge hammer and work 12-16 hrs. a day,,,we had a concrete constr. business,,,,,now there are days he is so weak he can't lift a newspaper to read it,,,,,shortness of breath ,,,even with o2,,,lung tests show he is taking in and blowing out at 60% capacity,,,once the air is in his lungs for the exchange of carbon monoxide and oxygen ( know what I mean?),,,,,it is only exchanging and operating 41%.,,,there is no lung disease,,,,,he also has the tingling,,,muscles ripples,,,,and almost to the point of charlie horses,,,,he has had rhabdo--1588 was bl.ct.--that's the day we stopped Lipitor,,Aug.16,2009>>>since then the symptoms have progressed rapidly........memory loss , confusion , personality and mood changes , red rash on his face and at times red blisters appear..,,,,extreme fatique,,,almost everyday,,,,,exercise intolerance,,,,,Lung dr. explained the muscle biopsy to us,,,,,if you threw something at him,,he could catch it,,,,short quick muscle action,,,,he just can't ride a bike, take a walk , anything that lasts over 4 or 5 minutes,,,he can't ,,,muscles are too weak for repitition.....when showering and shampooing his hair,,,he can hold his arms up for the count of 23 ,,then they are dead weight....no appetite,,,,hot and cold ,,,,,sweats,,,,unsteady walking,,,not good balance,,,,lost hearing in one ear for about a month,,now it's back,,,,,,,he has been having the dizzy,,vertigo spells and did today,,,3 bad ones,,then after the 3 tests we had,,coming home he lost sight in one eye,,,didn't go black but cloudy,fuzzy,,1/2 of it spinning around..,,,,he also had open heart by-pass (quad ) Jan.31 of 2009,,,just 7 months after taking lipitor,,,and since we know now what we didn't know then,,,the muscles starting aching with joint pain foot pain (couldn't move 3 toes up or down) pain in his hands and fingers and fatique started within a month ,,,then came the shortness of breath,,,,,,I know its Mitochondrial Disorder ,,,,,,just haven't found any dr. that will listen,,,,,we have a new neurologist ( she's the 3rd one,,,even went to MDA ) this one is the one that ordered EEG<Tilt Table Test< and echocardiogram today,,,,we see her again the 16 of Feb. for another muscle test EMG and she'll give us her diagnosis then.....she's the last one I'm messing with,,although she has been more agressive than all the other dr.s we've been too. But enough is enough,,,,,,,yes he was taking all the suppliments that was mentioned here,,,,then we went to a new family dr. in Dec. and said if suppliments arent helping don''t take them!!! hope this helps ,,,,didn't plan on writing a book,,,,,I'm researching the VAGUS nerve,,,,,will let you know what I find ,,,,thank you again

[David Staup]

Dear your post broke my heart and makes me very angry that we have not been able to stop this madness or even slow it down....I am so tired of seeing this happen to good people because of greed and ignorance!!!

I want to personally tell YOU that your husband is a lucky man! not all spouces are willing to deal with this. I know how hard it must be for you and your husband.

now to your husbands symptoms and progression...my symptoms worsened for almost a year even after starting the suppliments and even now regress if I do too much...my suggestion is to restart the cog10, carnitine, d-ribose, alpha lipoic acid...etc (the mito cocktail) and severly limit all activity...mental also for at least 6 months....make sure of the thyroid I'm on thyroid replacement and my muscle symptoms (the rippling and spasms etc.) are greatly reduced by keeping my thyroid tests just BELOW normal....

I'm going to send you some things for you to printout and give to your doctor in a direct email.

David

[gates]

the neuro. called us friday about results of the tests and now wants to see him wed. of this week instead of the 16th.,,,,so yes ,please e-mail us what you have and I will take them with us.. Still researching , perhaps I'll be familiar with some part of the assessment wed.. if for some reason the e-mail doesn't go through,,,just post web-site here..It's not been a good weekend for him,,,he now has had a heaviness,tightness,pressure from his eyes up that hasn't gone away,,started last thursday..he's been very tired and legs and arms heavier than usual,,,,,,it was a long day wednesday and this is what happens,,,thank you for helping,,,,

[David Staup]

I have resent the email with files attached and a website included
to the address listed in your profile.... I'd print the symptom list which includes a link to the UCSD adverse effects study. the study itself is like 80 pages and you may not want to print that....
I periodically have the symptoms you describe from the eyes up usually associated with having done to much thinking, reading, concentration but am not sure what the mechanism is

[bucho]

Your husband's story sounds so much like mine! In my case, the offending substance was 3 years or so of zocor. In addition to the fatigue, exercise intolerance, fuzzy vision episodes, erratic hot/cold sweats and chills, mood and concentration problems, terrible muscle wasting and burning, red face rash (I thought I had Lyme disease), I also had a pulsating vibration throughout my body and countless other problems. (Search my past posts and go to the earliest one, August 20, 2006, for a complete accounting of this horror story.) Basically, all hell broke loose (quite suddenly) and continued to get worse for at least a year. I spent most of my waking hours researching medical web sites and finding that I seemed to have every disease known to mankind. And I have never been a hypochondriac.

You are one of the first to mention the vagus nerve, and I also believe I had vagus nerve problems (although never diagnosed, because I quit going to the doc after a point.) I ended up in the ER two times with very slow heart rate, to the point I couldn't stay conscious. Also every night, bad stomach pain and digestive problems lasting until 4 AM, around which time my heart would often STOP and that would wake me up. These heart and digestive problems led my research eventually to the vagus nerve. Also, I had bad neck pain and lots of crack and crunch and limited range of motion in the neck, adding to my suspicion that the vagus nerve might be compromised.

But I gave up on the medical tests so never had my theory checked out. Instead I found this website and it helped me understand that I needed to stop the statin, and then time and supplements would be the best remedy. But maybe my case will give you some hope. Today, at four years off zocor, I am 90% or more back to normal. It was a very slow, gradual process, with many ups and downs. The worst aspect was the exercise intolerance -- it was the slowest to recover, and even today if I really push hard I feel tired for about 2 days thereafter. But I am so much improved -- far beyond what I had expected after 1 and even 2 years of struggle. I can't emphasize enough how much despair I felt along the way. A major reason was that I've never experienced such a slow recovery from any other type if injury or illness. So in all my experience, the statin recovery seemed so slow that I did not believe a recovery was underway at all. But it was

The digestive problems actually went away fairly quickly, and the heart rhythm improved but still not as steady as before the statin. Now that I am mostly over the exercise intolerance, I am finding that aerobic exercise (an elliptical trainer) is doing a tremendous job of steadying up the heartbeat. And I only do it once a week (25 min session) so am now trying to find a second opportunity per week.

Best of luck to you and your husband. We will hope for the healing of time.

[gates]

David and Bucho thank you both for your encouragement to us. Like everything,,people just don't understand unless they've been here.,,believe me it has been an awakening! I think the anger and frustration keep me goin',,from the fool dr.s to the FDA and S.S. disability,,and the Insurance companies ,,I'm so ready to dig out my "tie dye's" and Jimmy Hendricks glasses and go to Washington,,,,tho I think my first stop will be the local TV stations. You don't realize the monopoly and politics of the medical community until you are actually in the middle of it..I turned a complaint into Medwatch about Lipitor and now am searching out class action ,,,have corresponded with 2 law firms so far....I have also read that statin drugs cause post-surgery demintia!!,,,we experienced that too,,from friday--Thursday after his open heart by pass,,,now that was a treat,,,one time he thought he was a James Bond character and nurses were out to kill him,,,that ended with him beating the nurse over the head with his pillow until she got away and called in help...,,,,,well we go to the Neuro gal tuesday for another emg and her diagnosis of the problem at large,,,the last time we were there , she told us because his blood pressure dropped 71/41 on the tilt table ,,it was a heart problem,,and make appt. with cardio doc...we did....he says not the heart!!!!,,,time to get away from dr.s and get to Clinic.. so we'll see what neuro gal has to say about that.!! The neuro and lung dr.s disagree ,,,neuro says he can't breathe because it's a lung disease,,,lung dr. says neuro stay with muscles and I'll stay with lungs,,,LUNGS are Clear!! No disease,,,,,,,oh boy!!,,, again thank you both and good night we will keep you posted,,,,any info you have we'll take,,,,,the gates

[gates]

Hello everyone,,,,,husband and myself have spent the last few days preparing for C.C.,,hoping Dr.Cohen will see him..,,,hasn't been that good for the last 3 days,,,,terrible heartburn out of no where and it lasts during day into night. Really worried about the shortness of breath,,the least little thing he does besides walking and he has to stop and hold onto something to get air,,more dizziness and headaches,,,been reading MitoAction,,,and Tuesday we got a diagnosis from the Neurologist!!!! He has FM,,,hummmm,,,very sad to read about Ray,,,to any one new to this site ,,,,,wondering,,researching,,looking for answers or what ever,,,DON'T TAKE A STATIN DRUG AND LOOK UP DRUG INTERACTIONS !!!!! IT'S A MATTER OF LIFE AND DEATH FOR YOU AND YOUR FAMILY,,,,,,,,good health and good evening to all ,,,,,gates