Dr. Beatric Golomb: Recommendations & Other Info

[cjbrooksjc]

I completely agree. Pam. It is a roller coaster. I'm also beginning to think diet has a lot to do with that. I had allergies to dust, oak, cats, yada, yada - before statins, and they are now more varied and MUCH worse. If I pop an allergy tab when I feel really terrible, it will often improve my condition. That is in keeping with the contention that this problem is an auto-immune issue. Just my two cents, er, wait... that's about $4.16 in today's $.

Also, I'm not sure it's the Drs' arrogance that bothers me. I think it's the fact they feel we are so ABSOLUTELY IGNORANT we must be totally wrong!


Best,

Brooks

[gotts1936]

Brooks, good point. Somedays my legs hurt and some days they feel alittle better. I think I am going to start a journal keep a record of what I eat and how it effects my legs. The other day I ate some salted peanuts and that night I suffered alot. These peanuts were not dry roasted, but cooked in some kind of fat. Oh well, I quess I am just grasping at straws.

gotts

[cjbrooksjc]

Grasping at straws may be our last bastion of hope.

Brooks

[vipergg22]

Did she have any comments on the peripheral neuropathy or peripheral nerve damage that these wonders of science can do ? They gave permanent severe cases of PN in both feet which have never resloved itself and slowly continue to get worse thru every year.

[pgrimm]

I don't recall the doctor referring to nerve damage as permanent or not. Bill had two such neurologists exam him, both saying that he didn't suffer any nerve damage. Of course, they had not idea what was wrong with him, either, and just wanted to give him some more of their drugs. It's still pretty amazing to me that I was the one who finally diagnosed what was wrong with him, just by putting in all his medications on google search. Then I found this site, read up, and rushed him to the ER and told them what he had. They laughed, oh sure, you looked it up on the internet. Then I talked with the ER doctor, who took my diagnosis very seriously, and took him off of everything immediately. Of course, I already had already done that, and just needed an md to confirm it, just in case it became a lawsuit! Now isn't that weird that they can go to med school for how many years? I sit up all night one night and eureka, I got it.

I recall years ago after having some pretty severe sciatica myself, I was told that I didn't have nerve damage in my feet. But I have a pretty weird feeling toe that never gets better, so I suspect that we know more than any exam can reveal...right?

As I said, I'm not sure what all will be in Dr. Golomb's journal article coming out, but wouldn't it be nice if it gets some media coverage? I will email her soon to find out more about that. Maybe we can all write the tv networks to call their attention to it? Hey, you never know what will work.

[pgrimm]

Just thought of one more thing Dr. Golomb told Bill. Now this is probably very obvious to the rest of you, but honestly, neither of us thought of it. You should never handle or be around any pesticides. Bill sprayed all around the house for bugs. I guess that was a big mistake. He won't do it again! She said you are really vulnerable to these poisons, so do stay away from them.

[cjbrooksjc]

Was that caution due to Bill's statin poisoning or just general advise?

Brooks

[pgrimm]

The caution about pesticides was related to having statin induced myopathy. She said he was very vulnerable at this time, and should never be around pesticides.

[mariec]

I am so glad I found this general web site! It is filled with people and their stories and battles, that I thought I was facing alone. I work at a world famous medical center in the upper mid-West and beginning in September 2001 and the present, I find daily life very challenging.

It is refreshing to read about Medical Doctors who are secure and independent enough to stand away from the multitudes of those who cannot or are not permitted to think outside the box.

I was taking Zetia until recently. I did not know it was a culprit in my muscle dysfunction. I am able to walk -- without pain -- for greater amounts of time than before. I still have cramps in my calves and feet, unless I wear warm socks to bed.

I am 10 years from retirement and feel that anticipation is overshadowed by my physical limitations. It feels like crap.

Thanks for reading/listening. I would like to hear about successful legal action/s taken or currently being pursued.

No longer Queen of Everything

[Allen1]

Hi there mariec,

Sorry to see you had to find out the hard way about the effects of cholesterol lowering medication. I have read that Zetia has enough side effects on its own and a lot more if statins are also prescribed. You never mentioned any other medication so hopefully it was just the Zetia that you were taking, this is bad enough from what I have read and hopefully another victim of this medication will provide a more useful post about their experience shortly.

My poison was Zocor (simvastatin), good luck with your improved health and recovery.

All the best,

Allen. :)

[mariec]

My first reaction was from Lipitor and my second reaction was from Pravachol.

This devasting experience is definitely not for someone with low self esteem. I now have diabetes, acid reflux, greater depression and considerable deficits emotionally, socially, and financially.

Thanks for caring enough to respond.

MarieC

[pgrimm]

Hi Marie, welcome. First I have to say that I'm glad you still have your fabulous sense of humor, signing off as "No longer the Queen of Everything". That tells us a lot about you!

You will find some wonderful folks here, and a whole lot of information and support. I hope you will make logging in a daily practice, it helps many of us keep our sanity!

Pam

[mariec]

Thanks, again for taking time to respond.

Do either of you know of any active, legal action/s that can help me (retaliate?) seek monetary justice?

I'm wrecked and feel exhausted in my almost 7 year, torturous saga.

[cjbrooksjc]

mariec: Sounds like Mayo. Anyway, there are a number of supplements you can take to alleviate the pain. Below is my daily supplement intake:
*******************************************************************

CoQ10 1000 mg in 200 mg caps 3 x day

Alpha Lipoic Acid 200 mg with meal
Acetyl L-Carnitine Arginate 1000 mg before meals (500 Mg each time)
L-Carnitine Fumerate 2000 mg before meals (500 to 1000 Mg each time)

*******************************************************************

Vitamin A 10000 IU
Vitamin B6 50 mg
Vitamin B12 400 mcg
Folic Acid 400 mcg
Vitamin C 3000 mg (500 Mg tabs)
Vitamin D 2000 IU
Selenium 25 Mcg
Creatine Monohydrate 7,000 mg

I get the CoQ10 (Q-Gel) from **http://www.epic4health.com (remove the **) And I get the rest from **http://www.gonsi.com/ (again, remove the **)

Also, the only open suit I'm aware of is being built against Vytorin which contains a statin AND Ezetimibe (the ingredient in Zetia). If you go to the latest newsletter you will find a link to the firm instituting the suit. If you don't receive the newsletter, I will be happy to send you one - just email me, and you can sign up for following NLs on the home page.

Best,

Brooks

[mariec]

I figured my location clues were pretty obvious.

Thanks for the supplement names and links.

[harley2ride]

[quote="cjbrooksjc"]I completely agree. Pam. It is a roller coaster. I'm also beginning to think diet has a lot to do with that. I had allergies to dust, oak, cats, yada, yada - before statins, and they are now more varied and MUCH worse. If I pop an allergy tab when I feel really terrible, it will often improve my condition. That is in keeping with the contention that this problem is an auto-immune issue. Just my two cents, er, wait... that's about $4.16 in today's $.

Also, I'm not sure it's the Drs' arrogance that bothers me. I think it's the fact they feel we are so ABSOLUTELY IGNORANT we must be totally wrong!


Best,

Brooks[/quote]

Brooks, that is very interesting, as I had mentioned something very similar about this with my doc. I get fairly rapid relief from taking benedryl. When I told my doc about it, he just looked at me like "sure you dummy".. He said it acts like an anti-inflamatory.. But he also said that I should be careful not to take them unless necessary, as they didn't go well with all the other stuff I'm on.

[harley2ride]

[quote="pgrimm"]Yes, that's exactly what Bill experiences. I empathize with you, you get up one day and feel better and it sure can get your hopes up. Bill makes plans to work, then he has a bad night, and gets very discouraged. Especially when he does so little phsycial activity and it really gets him down the next day. I am disgusted how the doctors make the assumption that if you stop taking the statin, you will feel better then next day. As if there is no damage done that will take so much time to heal, and as if you can expect it to be 100%! I would like to think that at best, they are just ignorant, but it's hard to imagine that they are aware of the reality of this situation. If you do street drugs or even abuse alcohol, you don't escape without some serious damage when you stop using! I never was that trusting of most doctors, now I'm much less. And on top of that, they can be so arrogant![/quote]

Pam, One thing that helps me the most, is to use moderation.. I tend to overdo it, and my doc says that my muscle recovery time, is about 5hrs for every 1hr of exertion.. So basically, if I overdo it just one day (all day), it takes me almost a week to get feeling better. But if I use some restraint, I last a little better. I still see a noticable decline as the week progresses, but not nearly as bad as when I don't take it easy...

[cjbrooksjc]

Harley: I often feel like a cat with a ball of yarn - one day the thing unravels a bit, and I'm not sure just what action to credit. The allergy pill is a real keeper for me though; it helps - esp with the leg hamstring aches. If I were a biochemist I could work that remedy backward into a cause - maybe.

Mariec: I typed 25 mcg of selenium. It should be 200 to 250 mcg.

Brooks

[harley2ride]

I know how you feel. I'm taking all this stuff, and scared to death to change anything.. How I feel from one day to the next varies so much, that it literally takes months of trying to change one thing here, one thing there, that it makes it nearly impossible to see if something really helps.. Then I have to factor in my activity levels. It's a freaking nightmare.. lol At least I can still joke about it.. I would love it if I could cause all the pharmas and docs to have the exact problems that I do (Only the ones who won't believe there is a problem with the statin poisons.)... I bet they would have a big change of heart, if it were hundreds of thousands of them in our shoes..

[cjbrooksjc]

Harley: Pharmas and Docs with heart? Rub every oil lamp you find. A genie is our only hope. Off topic - The new sticky 'Statin Story' is a good idea - a repository of anecdotal evidence. Hope some more people write their own histories.

Best,

Brooks