Please Tell Us Who You Are

[pgrimm]

Colcath,
I am sorry your recovery is taking so long. For you, and for my fella Bill. Off the dreaded lovastatin three weeks, he keeps asking me questions like how long will it take to get better, will he make a full recovery. I tell him what people are tellig me here. I really don't hear anyone say that it's a quick thing. You took statins for many, many years, Bill too, six, and all along, the doctors kept telling him not to worry, that his blood tests were always normal. He now remembers my warning. I usually try to look up all prescribed meds online, and early on, I found that they caused muscle and liver damage. I didn't know, however, that those damned tests could be normal and it would continue to cause so much damage over time! What a nasty trick to pull on people. Again, I'm sorry, and I hope that your recovery continues to find you stronger each day.

I can't get Bill to come on here, I'm sure he has his reasons, but I do talk about you all, and how important this forum us to me.

[gotts1936]

Pam, those of us who have been adversely impacted by statin drugs and will never be normal again must unit and protect our rights, one way or the other.

[pgrimm]

Yes, I agree, your rights have been violated and this must not continue! We must all unite, victims, loved ones, and caring professionals.

Most of the posts I see on this forum are people trying to find the most effective ways to alleviate their pain. There are also very enlightened people telling how they have tried in vain to stop the drug companies. Maybe a better way is to bring this injustice to widespread public awareness. My personal experience over the past three weeks has shown me that almost no one out there is aware of how dangerous these statin drugs are. So far, the best idea I have heard to correct that is to put videos of our members telling their plight on You Tube. This method doesn't require anything as taxing as flying to Washington D.C. to march. Luckily, we're in an age that we can use our technology to spread the word by email and websites.

My poll to identify our members disappoints me in that there are so few loved ones who log on here. Please encourage yours to join us. We will need their energy as well to accomplish this first effort towards public awareness. We really can do this!

[gotts1936]

Pam, I am disappointed with the fact only 20 individuals on this website have participated in your survey. If only 20 of us have been impacted by statin drugs, one way or the other, we are all in a heck of trouble. And, the question who in the hell are the hundreds of individuals who surf this website everyday?

[Darrell]

I'm a 53-year-old victim of Zocor for "borderline" cholesterol: three years after stopping Zocor and one leg has still not recovered. All the symptoms fit a statin-induced skeletal muscle mitochondrial disorder similar to carnitine deficiency or similar "fatty oxidation disorder." Carnitine helps. I have miscellaneous other signs of myopathy and neuropathy, but my leg is by far the worst. I'm resigned that my leg will not recover, thankful to Ray Holder and this board for pointing me to carnitine for some relief, and thankful that I have not deteriorated any further.

I have lost a lot of confidence in doctors and pharmaceutical companies to uphold their responsibility to "first, do no harm." It seems to me that a lot of doctoring has been reduced to ten-minute, pill-pushing, shoot-from-the-hip sessions and pharmacology has been reduced to a mere pawn of corporate greed. I wonder how much of our spiraling health care costs are due to physicians that don't listen to us and pharmaceutical companies that are unintentionally poisoning us.

[Dee]

Hi Pam and all,

Pam, I have from time to time, tried to get something organized to address the statin issues that we victims endure.

The one idea I think has some merit is the formation of a coalition. Here is an example of what I am talking about:

*http://groups.msn.com/SocialSecurityDisabilityCoalition/aboutouroriginsandpresident.msnw

This is a HUGE site with it's own petition, and these 2 ladies have accomplished A LOT in about 5 years. One recent thing they did was get AARP to write about their cause....and millions of people read that! They have also gotten the attention of congress...you just have to look at the site, you will see what I mean.

The purpose of a STATIN VICTIM COALITION:

To pull all the fragmented forums and groups together, in one place, to start an plan of action. This would take committees to handle various duties, so that no one gets overwhelmed.

Committee list (just some examples):

1) Petition draft and implementation Committee: (a petition would get a head count, and would grow over time, to be presented to Congress, etc)

2) Action plan (Sort of a mission statement, to do list, etc.)

3) Correspondence Committee: Letters are drafted, so that anyone can copy and email, along with their personal experience, to doctors, congress, FDA, etc.

4) Research: this committee would gather and organize research in support of statin victims, with an emphasis on the most unbiased, independent studies available.

5) Publicity: This committee would pursue print and media avenues to expose the vast scope of the statin issue.

6) Legal: to make sure we take all the right steps in our journey, investigate class action suits, etc.

Pam, that is just a start, very rough, I know...but truly what I believe it will take to really get any where with this issue.

There is power in numbers. We have the numbers, just not the organization OF those numbers to accomplish what is needed.

[Dee]

Pam wrote:

"My personal experience over the past three weeks has shown me that almost no one out there is aware of how dangerous these statin drugs are."

Exactly MY feelings, when I discovered my problems were from Pravachol, and that was OVER 4 YEARS ago!

[mbneal]

First, I am a 65 year old male who was on Lipitor for approx. 9 mos. when I started to fall apart. I have a "Popeye" right bicept, High Hamstring Tendonopathy, pulled groin, aches, pains, tiredness, Tennis elbows without the tennis, and general flu-like symptoms. I have been off of Lipitor for almost two years yet my symptoms continue. I am taking coQ 10 enzyme, Calcium, zinc, Vit. C, etc., etc. all seemingly to no avail.

This is my first Forum and I have two issues: 1. Has anyone found any substance that in any way reverses the Statin symptoms and, if so, how long does it take and what are they..? And, 2. I read the Legal Action comments and can only offer that with the breadth of this web site and others, it seems reasonable to me that a Law Firm specializing in Class Action Law Suits would be willing to take on this issue. Normally they send out a questionnaire with the key questions and identifiers from which they build the case and gather more details as it progresses. If anyone reading this has such a contact, that is where I would start

[cjbrooksjc]

mbneal: Welcome to the forum.

First, let me add some other elements to your satin 'cocktail':

You are essentially trying to heal your Statin-damaged Mitochondria (mito), the batteries of the cell; so, to boost your cellular energy, combine CoQ10, L-Carnitine, and D-Ribose. But there is another essential element - magnesium. If you think of glucose (which is converted to D-Ribose) and short chain fatty acids as the fuel of the mito engine, then the acetyl L-carnitine and Co-enzyme Q10 are the oil, and magnesium is the spark plug! You also should be taking B6, B12, and Folic Acid. These three are usually found on the store shelf or E-shelf in combination. B3 is often aggravating to the symptoms and should be avoided initially. Also 200 Mcg Selenium daily. Space doc (Dr. Graveline) is a proponent of glyconutrients as well; just Google the word to find a source. Amounts vary by individual. I take around 800Mg to 1 Gram of CoQ10, around 1.5Gr to 2Gr of Carnitine, 400Mg Magnesium, and 5G of D-Ribose powder daily. Break the CoQ10 and Carnitine up into three doses each day - the CoQ10 WITH meals and the Carnitine on an empty stomach. As to how long recovery takes - it's a crap shoot... some heal quickly; some take months to years.

Finding this forum has been a Godsend to me and many others. I hope you feel some improvement in your condition, but be aware, it often takes a few weeks to feel any improvement at all.

Regards,

Brooks

[cjbrooksjc]

mbneal: One more thing: As to the legal avenues - if you know how to get in touch with Erin Brockovitch...

[Dee]

mbneal,

Since you took Lipitor, you should check out the following site. He is the only one I know of that is dealing with any of the statins still on the market, and that statin is Lipitor:

*http://www.krumlaw.com/

Remove the asterisk.

[garystil]

I was ok on Zocor for 3.5 years until a period of stress seemed to turn the statin against me. I developed fructose intolerance and ulitmately all food became poison. I had lost 20kg when I decided to stop taking the drug.

I am fine now and am left with only a mild fructose intolerance - and a great deal of compassion for others less fortunate.


Gary

[pgrimm]

To Brooks, thanks much for the additional information on supplements you posted, will purchase them today.

To All: Did you feel much worse before you began to feel any better (IF you have)? Bill just walked in here looking the worst I've seen him (since I figured out on thte internet) that lovastatin was the culprit for his bodyaches and headaches. He has had two or three decent days recently, but days in between are unbearable for him. Not sure if you can call anything related to this as "normal", but wondering if this was common.

He checks into the VA hospital in San Diego tomorrow. Rather scarey, I'm afraid they will try to dope him up again. Also not sure if they will allow me to give him all his supplements! What's been your experience with this? We're just wanted a confirmed diagnosis, tets to show the amount of damage. You can't seem to do anything without the stranglehold of the medical community.

Pam

[Darrell]

Pam, I think to some extent we learn to pace ourselves. If we overdo it in a good period, we may precipitate a bad period.

For the 16 months after stopping Zocor and before starting carnitine, I learned that my best pacing was two hours of rest (sitting or reclining) after each hour of activity (standing or walking). Anything else sent my leg problem into a downward spiral. Since starting carnitine 22 months ago, I don't have to pace myself that way as long as I don't accidentally miss a dose.

I still have occasional "bad leg days" in which I wake up in the morning with a mild leg ache that carnitine can't subdue. I've learned that I must take it a little easier on those days and it will pass in a day or less. If I don't heed the warning, then I've had it last three or four days, even with rest after the first day. I suspect that those long bouts are healing time for the self-inflicted damage the first day, so I'm trying very hard to respect "bad leg days". The only problem is that I haven't figured out what precipitates them, so they can pop up at any time, no matter what I have scheduled.

Working those muscles in spite of the aches and pains may do permanent damage (i.e., destroy mitochondria), so I try very hard to rest when I need to, whether it's convenient or not. Physical therapists seem to like strengthening exercises, but my body told me that was the wrong thing. Stretching exercises were okay though.

[cjbrooksjc]

Pam: It's hard to predict a cycle in the healing process. My experience is that I will feel well one day and less well the next. I try to keep a diary of what I eat, drink, do on a daily basis, but things will move along normally for a week or two and I'll quit the diary feeling I have no useful data to capture; then I'll have a bad day or two and start the diary again. Maybe YOU could keep a diary for your husband - I'm certain he's not up to it, especially on bad days. You might capture some predictable anomaly that could help him develop predictable patterns.

Thing is, Pam, no one seems to know what the incubation period for either problem OR improvement antecedents might be. i.e. eat mushrooms today, feel bad two days from now; take glyconutrients for one week and feel no improvement until the 7th day. You drop something into the river and it fetches up somewhere down stream; you just can't predict where.

This is not terribly helpful, I know, but it helps to exchange information; even unhelpful information.

Best,

Brooks

[cjbrooksjc]

Pam: One other thing: With all the retired admirals in San Diego and Coronado, you 'd think the VA would put some of their best there. One can hope, yes?

Good Luck,

Brooks

[equestrian]

:( Pam, two issues. First, I'd like to respond to your poll. I am a victem. A very long time user, probably 8 years on Lipitor and an additional 4 on Vytorin. I've just discovered the source of the problem. What I haven't discovered is the right type of doctor to work with. Today my allergist felt strongly that a neurologist is the right direction. I am somewhat apprehensive after reading everyone's experiences. It seems that very few specialties are equipped to deal with this problem, let alone even aware of it. I would hope to be more actively involved here on the forum at a later date. I certainly commend your activism. I am just not prepared to lead a charge at this time. For now I'm overwhelmed and for the first time in my life I'm really SCARED. My priority for now is to continue to educate myself.
Thanks for your efforts.

[pgrimm]

Brooks, Darrell, Equestrian and all,
Thanks for all your responses to me. I'm only the loved one of a victim, so I hate to complain, but I have my down days, but mostly just low energy. It's so hard to look at this guy who just a couple of months ago was zipping around this house comically, and is now making his way so slowly around with his cane. I can see the pain in his face, almost all the time. Every once in awhile, the old Bill comes back, with that wonderful sense of humor, actually enjoying his day, only to wake up in the morning looking five years older. Don't get me wrong, I don't say that in a superficial sense, it's just that it scares us both that someone can age so fast. You all know what I mean. I am trying to face our trip to the VA in SD tomorrow with both optimism and realism. They won't even call us back to say what to expect, will they admit him overnight, and if so, for how many days. So I'll packing a bag, bringing the dog, and hoping for the best, whatever that might be. We both want him to get some relief, but surely don't expect them to provide it. Mostly, we do expect them to give him tests and a diagnosis. Without that, we'll have to get him into a private doctor, and without an alternate insurance, we can't afford to do that. You know, it's always a tragedy to become ill, but it's sure a lot easier if you're wealthy. We're not. So with medicine, you get what you pay for. I went to my own doctor today, told him about the VA, he said he used to work in that office, and indicated it was the worst. He also told me that of course the VA prescribes lovastatin, it's the cheapest statin drug they can get, and the oldest on the market, so of course they give it to our VETS. How sad is that?

My energy waxes and wanes, this has taken it's toll. I have an exhausting job, and I am adding overtime to get things done in order ot be able to take these days off to go with Bill. I want to do it, but I also want my efforts to pay off. Once he's settling into recovery, I want to help somehow, just not sure yet how. I need everyone's suggestions, then I'll be willing to do whatever I can. People here seem to know what has worked and what hasn't, so that a good start. I'm disappointed in the poll that there aren't more loved ones on here to help, and I was surprised to see that. I am encouraging everyone I know to find out more about this. I hope there will be enougjh people with the strength needed to fight these damned drug companies. They damage people so much then they can't fight back. It's criminal and it sickens me that they're getting away with it!
I realize I'm rambling here, just venting my frustration. I hope I can talk with Dr. Golomb on this trip, she has assured us she will at least consult. She is not doing inpatient duty at this VA until June, unfortunately. Bill's seeing a neurologist. If they start saying again that it's arthritis in his neck, I'll scream!
Wish us luck. I feel like whatever success we do have, will somehow be passed along to others. Not sure how at this time, just a feeling.

Wishing you good days, Pam