UCSD report

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Postby Cat Mom2 » Mon Mar 10, 2008 7:51 am

One poster finally said this as to why she insistes WE are responsiable for our own health care

"I know my way of thinking changed when I started working in the medical field...and saw way too many mistakes happening...and then of course being with my hubby as he went through med school and his residency...so I guess I have seen the other side of the fence.... "..

cjbrooksjc-Ha! We women suffer the same labido effects on statins so it must be the altering the tostosterone in us both. Can you imagine how many couples are wondering what happened to that part of their life?
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Postby cjbrooksjc » Mon Mar 10, 2008 10:55 am

catmom: I don't have to imagine.
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Postby Cat Mom2 » Fri Mar 14, 2008 11:25 am

cjbrooksjc- Opps, WHAT was I thinking? (sorry but that cracked me up!)

I am working on a letter to Dr. Golomb, informing her as to what I have been going trough since I quit the drug. In it, I am suggesting that she do follow ups to see how we are doing since we do not know what permanent damage has been done and how cheated I feel about being denied the right to make an informed decision and growing old the way nature intended.

I would suggest that anyone else that has problems since they have quit them that could be statin related should also write her and tell her, suggesting a follow up study on us.

At our company meeting they did the wellness check and had a RN there from the Vanderbilt Medical Center to oversee it and give a speech. I have to give her credit, she never once mentioned statin drugs. Anyway, I told her about Dr. Golombs study and the video and she wants me to send her the link to the study. Who knows, even if she just tells ONE doctor about my experience it could have a big impact on someones life. If she passes the video link around, maybe that could help many!
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Postby cjbrooksjc » Fri Mar 14, 2008 11:43 am

I think writing is a grand idea! Also, if your situation permits, include a small donation (or a large one) made out to the UCSD Statin Effects Study.

Dr. Beatrice Golomb
UCSD Statin Effects Study
9500 Gilman Dr. #0995
La Jolla, Ca. 92093-0995

Regards,

Brooks
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Postby uncle2blade » Fri Mar 14, 2008 12:10 pm

Cat Mom2
I too like your idea and am writing a letter as soon as this post has been sent.

Thanks, Craig
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Postby SusieO » Fri Mar 14, 2008 12:19 pm

I don't want to steal this thread or change it, but as far as being low on testosterone my wellness doctor where I get my supplements has me on DHEA and Cortisol vs. testosterone and I can tell you IT HELPS!!! My hubby will also tell you it helps - no more of those "I've got a headache - not tonight" excuses!

Every 4 months I do a saliva test for him that checks my hormone levels 4 times during the day - it is far more accurate than the blood test that my Gyn used to give me.
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Postby cjbrooksjc » Fri Mar 14, 2008 2:28 pm

Susie: What is your DHEA dosage?

Brooks
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Postby Cat Mom2 » Fri Mar 14, 2008 8:52 pm

I want to know what doses, where to buy them and that test!! That would sure help me out a LOT!!
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Postby epfleger » Sat Mar 22, 2008 7:06 am

Back to the UCSD thread, I'm sorry but I just can't get all fired up about this. I want answers damnit, not another confirmation that statins do indeed cause side effects. We already know that. At the end of the study, what will we learn from this study beyond what we can't already glean from this site and others like it?

I am 40 years old with a beautiful wife and 3 small kids. The specter of having to deal with these horrible side effects for the next several years (perhaps forever) without any concrete solutions is sometimes about all I can take. These drugs have stolen a large measure of my ability to be a husband and father and God damnit I want to know how to fix this!! I'm sure we all do.

We need a large scale study to find a "cure", or at least a study that provides the legions of us statin damged zombies a proven way to mitigate these effects. I relize that the UCSD study may be the first step toward such a goal, but I am doubtful that once all the data is compiled in the UCSD study that a search for a cure will commence.

I am a lawyer and I am just about ready to start kicking some pfizer ass. Perhaps this study will provide the necessary data to take on Big Pharma, and so perhaps it is not completely worthless. We'll see, I guess.

I have had enough. Sorry to vent.

Ed
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Postby pgrimm » Sat Mar 22, 2008 7:47 am

Epfleger,
I heard those very words coming from Bill, my guy also afflicted as you by statins. You're right. I've heard/read nothing from the medical field on taking responsibilty for what they've done and actually trying to fix people.

Bill has an appointment with Dr. Golomb in three weeks. I will print your post here, with your approval, and hand it to her. I don't know if she reads this forum, but I'm sure she's in tune with the misery of statin victims. Just thought I'd see what she has to say about this.
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Postby epfleger » Sat Mar 22, 2008 8:13 am

Pgrimm:

Feel free to forward my post along to Dr. Golomb.

As an aside, my wife and I have decided to move to Tucson in a few months. That puts me about 5 hours away from SD. Does Dr. Golomb practice in the SD area? and if so, I wonder if I could get an appointment with her?

I trust you understand that my previous vent was not directed at anyone in this forum. Indeed, from what I can tell, you folks have already beaten big pharma in what counts the most. You are unselfishly helping your fellow man. What is better than that?

Ed
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Postby pgrimm » Sun Mar 23, 2008 1:02 am

Ed, Bill is getting ONE, just one break in all this. Dr. Golomb works at the La Jolla VA. Right now, in the outpatient area only. While the VA has done nothing but harm Bill for four years, ironically, the one doctor we want to see is available, to my knowlege, only at the VA! I wrote her several weeks ago peading his case, and she responded. She also agreed with him not to take the VA up on their offer to attend their pain clinic, which I thought was hopeful. She is conducting the research at UCSD, but not sure if she also treats there. Worth looking into. Dr. Phillips is also in San Diego, might check on him. So far, all we're hoping for is a realistic diagnosis. We have two attorneys willing to discuss taking his case, but not until he's been diagnoses. A great big Catch 22. The VA overprescribed, and now we have to expect them to come up with the evidence that they did! Not bloody likely. So we'll see. He'll be eligible for Medicare next November, at which time he can go to a private doctor, which might be a bit more likely, but not much, according to everyone here. He's seen five doctors with the VA, none of whom suspect his lovastatin one teeny bit for all this disabling pain he's been in suddenly for three months. Amazing, huh. His primary care doctor dumped him, what does that tell you? Could it be that I confronted her with malpractice, gee, he was prescribed 20mg, complained of shoulder pain, and they upped it to 40. At one time for a period of probably close to a year, they had him up to 60! Damn. Anyway, no matter how far, it's worth a try to see her, if you're at all able, but maybe I can say that with more conviction after Bill's appt in April.
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Postby epfleger » Sun Mar 23, 2008 7:12 am

I do hope you post your experience with her. I'll be watching with bated breath.

Regarding your primary care doc, I think it's a safe bet that there was some fear of malpractice on her part and so she dumped your husband. Not surprising at all.

Just so you know who I am, I am a patent attorney currently practicing in New Hampshire. I do not practice in the area of medical malpractice, but I too am discussing this matter with several attorneys. It may make sense, at some point, for your lawyers to talk with my lawyers. Frankly though, I admire your energy to pursue this matter. I find most days that it is all I can do to manage my side effects. I suppose once I start feeling a little better the Irish in me will want to kick some ass!

Anyway, I look forward to some positive news from your meeting. Best of luck.

Regards,

Ed
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Golomb's research

Postby pgrimm » Sun Mar 23, 2008 11:53 am

Thought you may be interested in Dr. Golomb's vitae, if for nothing else, some very interesting topics listed.
*http://www.cnl.salk.edu/~bgolomb/
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statin drugs

Postby gotts1936 » Sun Mar 23, 2008 2:07 pm

Here I am again! I'm sorry, but I can not believe that any statin drug study is going to absolve any drug company of complicity in the physical
destruction of their human patients.
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Postby pgrimm » Sun Mar 23, 2008 9:09 pm

Gotts, I think I'm confused by your post. Are you inferring that this study has the intent of absolving the drug companies? Because I'm taking it just the opposite, as difficult as it is to accept that anyone in the medical field is willing to do that. We can hope, anyway, that the UCSD will offer up some sort of start in the direction of wrong doing, intentional we'd all say.

So Bill is saying that the blame should lay with the doctors. I say both, but it seems that your average doctor doesn't care enough to look beyond the cheat sheet of possible effects provided by their makers.

In the case of our appt with Golomb, we believe we can look forward, at the very least, of speaking with a doctor who actually understands what we're talking about (given her vitae), without having to do verbal acrobatics to convince her that these pain he experiences is due to the statins. We're sick to death of getting these stupid ass looks, like we're down from the hills and know nothing, and will eat up the chum they dish out to us. Isn't it so insulting? "We can't be sure it was the lovastatin, his headaches (that started two weeks prior) are not likely to be related to the muscle pain, probably some arthritis instead", and "he must be doing fine now, he's not taking any pain medication".
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Postby cjbrooksjc » Sun Mar 23, 2008 11:59 pm

Thanks for the link to Dr. Golomb's CV - very interesting. I also perused the embedded links and found more statin study reports I hadn't yet read; maybe tomorrow...

Best,

Brooks
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