PLEASE Post Your Story

[cjbrooksjc]

PLEASE! Post Your Story under the 'Sticky' at the top of the Statin forum.

When we send a Doctor or other medical or legal professional to this site to read about what this category of drugs is doing to us, it will be so easy for them to peruse a collection of real experiences. They will read about the symptomology similarities, the ruined lives, the heartache, and the pain without having to plod through all the conversational dialog of all the other forums. Please! Write your story and post it. We need this repository badly.

Fond Regards,

John Brooks

[gotts1936]

Brooks, I agree. Everyone should post their story on sticky! At 71 years old, I have a lot of empathy for those who are victims of statin drugs and are only in their 40's or 50's. They are to young to deserve this type of medical profession ignorance.

gotts

[harley2ride]

I don't know which was worse. Adding my Statin Story, or reading about all the rest who are as bad.... I really feel for those that are younger like me and Carbuffmom...

[Cat Mom2]

What amazes me is they had on the news and it is on the internet that no one should be taking these drugs but MEN for 45 - 65 years old and nobody is listening, not even the doctors!

[Dee]

Cat Mom 2,

What we have are doctors with no curiosity, no independent thinking skills, little if any common sense and drug studies funded by Big Pharma and printed in peer reviewed journals that the doctors read.

Then the drug reps show up and regurgitate and reinforce those same manipulated studies to "educate" our doctors. So the doctors spout off the company line, like some kind of expert on the subject....and treat us like some kind of renegades if we question their knowledge on the subject.

What a sad and vicious circle.

No offense to "our" Doc Graveline, he is the exception. Thank goodness for him!

[Dee]

Well, OK, so I watched too much Marcus Welby MD and Dr. Kildare when I was a kid.

I actually expect doctors to match the symptoms with the mystery disease, and save the patient, and all in under 60 minutes!

[mskitty45]

I agree with the posts that docs just go down a straight path in trying to make a diagnosis. It was an immuniologist who made the diagnosis. When I saw an endocrinologist about a thyroid issue I asked if she could assist me in managing the Mitochondrial disease - and while she was very compassionate she said she only knew of one physician who treated it and it was the immunologist that made the diagnosis. I then met with my primary care doc and asked for his help - he was also unfamiliar with it. He said that with his limited knowledge he only could tell me that it was not "lethal". At that moment I burst into tears and just told him that he and all the other doctors just doc get what this has done to me. My quality of life went from an 8-9 to a 2.

I always say things happen for a reason and I haven't yet figured out why this is happening. I do know I need to make something good come of this.

[Ray Holder]

Hi mskitty, and welcome to the forum

I had been going to post to you, but your first post was put on the "sticky" and not easy to post to.

I feel you should take some L Carnitine to overcome lactic acidosis, the primary function of carnitine is to escort fat into the mitochondria for metabolism, but it then takes away the "combustion" products, without which action lactic acidosis occurs, and this appears to be responsible for muscle pain.
Spacedoc would like you to email him on **spacedoc@cfl.rr.com and he has some info on mitochondrial mutations you may wish to see. ( remove the ** from the address)

Your leg weakness could well respond to the carnitine, "endurance" muscles as in legs and trunk have a greater need for fat rather than glucose for energy production, and so need L carnitine, A fairly slow build up of the dose is usually a good way to start, to avoid the possibility of GI problems, but usually a large dose of about 2 to 3 grams daily is needed to cause this effect. Try starting with 500 mg a day, first thing in the morning, and increase by another 500mg after about 3 days, and so on until you feel benefit or your bowels object, when reduce by 500mg for your dose to carry on with.

Both Q10 and carnitine are necessary for the function of the mitochondria in producing ATP for energy and I hope you have not got actual damage to the mitochondria, work in progress at Harvard Medical school suggests that some statins and other drugs damage the mitochondria themselves, but often the supplements give a large measure of relief, and mitochondria are capable of increasing by division, so hope for the best!!, and I hope you obtain some relief.

Ray

[mskitty45]

Thanks for the message Ray. I think my biggest complaint is an overall feeling of weakness/fatigue as well as a dizziness that I get just from walking up a flight of steps in my house or walking the aisle at the grocery store. On a regular basis, I feel like I have had a couple glasses of wine - slight impairment... Were/are these something that you suffer from?

Regards,

MsKitty

[Ray Holder]

Hi Ms Kitty

I should point out to you that I am now 87, and rely totally on carnitine to maintain what little strength I have left, having had polio in 1951, and a relatively mild stroke 3 years ago. My empty "energy tank" must have the right amount and type of supplement to refill it. In my exceptionally needy case, I take the large dosage of 10 grams of Lcarnitine a day, and 3x300 mg of Q10.
When my statin weakness was at its worst 5/6 years ago, I used to go to Majorca for holidays with my late wife, pushing her along the sea front in a wheelchair to a small cafe, regularly. I was unable to go more than halfway on one occasion, only six months after doing the full distance, that's when I realised what was really happening to me. It took another 14 months before I found what could help.

Fortunately, dizziness was not something that I suffered from, I was on simvastatin.

Ray

[mskitty45]

Hi Ray - I see that you are from England. I was doing some research on the internet and and saw information regarding work in mitochondrial research being done at Cambridge. Are you familiar with it?

Ms Kitty

[Ray Holder]

Hi Ms Kitty

I looked for mitochondrial research on google, but could find none under Cambridge, but found an article published on Student BMJ telling what is going on.

Apparently there have been three "Centres of Excellence" set up ( the title makes me cringe, it should have to be earned, not given as a starter) at London. Newcastle and Oxford, while there is a mention of Cambridge further down the page.It can be reached via
**http://student.bmj.com/issues/08/02/education/078.php

I have had a response published which follows on from the article, giving a more down to earth approach to start with, hoping DNA damage is not always reached.

Ray

[mskitty45]

Hi Ray:

Here is the website:
*www.mrc-dunn.cam.ac.uk/info/

Regards,

Ms. Kitty