Has Big Pharma caused us mitochondrial damage?

[Rand56]

Ok thanks, and yes I neglected to read your signature..my bad. I appreciate your reply.

 

[Eeyore]

No problem - lots of us with ME have had to learn a great deal about medicine. I also find it generally interesting, and it was my chosen career path before I got sick with ME, so my mind does work that way. I'm a strong believer in the team approach to medical care, where a knowledgeable patient works with a collaborative doctor, and both listen to the other and respect each other, and ultimately come together to find the best solution. Every case is different, and imo, avoid any doctor that works off a flow chart, doesn't want to listen to your input, or thinks he or she knows everything. Especially true if you have ME!

 

[Rand56]

No problem - lots of us with ME have had to learn a great deal about medicine. I also find it generally interesting, and it was my chosen career path before I got sick with ME, so my mind does work that way. I'm a strong believer in the team approach to medical care, where a knowledgeable patient works with a collaborative doctor, and both listen to the other and respect each other, and ultimately come together to find the best solution. Every case is different, and imo, avoid any doctor that works off a flow chart, doesn't want to listen to your input, or thinks he or she knows everything. Especially true if you have ME!

If at all possible, I avoid ALL doctors pertaining to myself LOL

 

[Eeyore]

@Rand56 - I can definitely see how the experiences of an ME patient could lead one there. I don't think you're the only one.

I've had some absolutely horrific experiences with doctors. I mean - so bad you wouldn't believe it. I've also had some good ones too. Smart docs don't mind being challenged I've found, and admit when they don't know things, so long as we also admit when we're wrong, or don't know things. That's the partnership thing that is important to build.

I still think the best care you can get is if you can build a good relationship with a doctor and work as partners, but I do get your frustration.

 

[PDXhausted]

@AndyPandy
A relative of mine developed myositis after taking statins. She improved significantly after IVIG treatment, I unfortunately don't know the details of her labs or what type of IVIG. Although, she did mention elevated CK. She didn't have ME/CFS but said her symptoms were constant tiredness and muscle weakness.

Anyway, just wanted to share this anecdote. I don't know if you and her have similar issues, but just wanted to put it out there... If there are similar underlying mechanisms at play, perhaps there is hope that IVIG could be helpful.

 

[minkeygirl]

@Rand56 - I don't expect my docs to know everything. I expect them to listen to patients and when they don't know, to find the info if it can be found.

Well you're lucky then. If you read around here one of the main complaints is inadequate medical care, docs who don't care it listen and generally being dismissed by the medical community. It just ain't that easy.

 

[AndyPandy]

@AndyPandy
A relative of mine developed myositis after taking statins. She improved significantly after IVIG treatment, I unfortunately don't know the details of her labs or what type of IVIG. Although, she did mention elevated CK. She didn't have ME/CFS but said her symptoms were constant tiredness and muscle weakness.

Anyway, just wanted to share this anecdote. I don't know if you and her have similar issues, but just wanted to put it out there... If there are similar underlying mechanisms at play, perhaps there is hope that IVIG could be helpful.

Thanks @PDXhausted I am interested in IVIG and will be asking my ME/CFS specialist about it. I have/have had the full range of ME/CFS symptoms so think it may be more than myositis, but I will look into it. My ME/CFS specialist says I am a rare patient with all of the symptoms.

 

[AndyPandy]

I hope you're not on Metformin. It depletes B12, folic acid, and CoQ10. You can find out what nutrients your various medications deplete by googling the name of your med and then "depletes".

Thanks @caledonia. I am on metformin. I don't like taking it but I am unable to tolerate other diabetic meds I have trialled. I am unable to exercise due to ME/CFS. I am a skinny type 2 diabetic and have trouble keeping weight on, so losing weight to bring my sugar levels down is not an option.

My diet is tight and I eat small and often. I have managed to reduce my metformin dose. I am hoping that with improvement in my ME/CFS over time I will be able to reduce the dose further.

I am aware that metformin depletes those things. I am supplementing CoQ10 and have just started methylation.

Thanks for your concern.

Best wishes, Andy.

 

[Eeyore]

@AndyPandy - I woudln't worry much about the metformin. People who are into life extension take this drug - it's been shown to slow down aging in animals. It also improves energy utilization in skeletal muscle. It's extremely well known and safe, and if you take too much you don't end up hypoglycemic as with some diabetic meds (e.g. sulfonylureas). If you possibly can, be cautious about the incretin class of meds. My endocrinologist will not prescribe them - he says there is a lot of concern about them having serious complications, and he's seen some with patients who combine them with blood pressure meds. Also some reports on thyroid cancer now with those. I'd be worried about that class of drugs, but metformin I would not be worried about. It will probably just make you have more energy and maybe live longer.

IVIG has been used in ME by Dr. Jay Goldstein, and he said it was very effective. It's an anti-inflammatory, and it's mechanism isn't entirely understood, but may function through some sort of feedback inhibition loop on immune function. It's not often used for ME because it's expensive and limited quantities are available (it's from human blood). Insurance companies generally will not pay for it.

Metformin has no negative effects on CoQ10. Statins do - e.g. lipitor, crestor, etc. Metformin is one of the safest, lowest side effect drugs out there. The main thing you worry about is gastric discomfort (not serious) when you take it. The extended release versions are often easier on the stomach.

 

[Eeyore]

@minkeygirl - Not really, I've had some bad experiences - but I am right now in a good place with doctors, including a PCP I really like and an endocrinologist who knows better than any doc I've ever met that as a doc, the most important thing you can do is to listen to patients, and always believe them.

 

[minkeygirl]

Good for you. That's still not the norm imo.

 

[Eeyore]

My endo is definitely one of a kind. He has a 2 yr wait list as he is so beloved by his patients!

 

[JPV]

Cholesterol is just a marker for the underlying inflammation in your body. What comes next is my view, and not necessarily scientific consensus. Cholesterol is upregulated in response to inflammation, in particular membrane peroxidation.

Thanks, I think this must explain my high cholesterol. Over the last few years, whenever I eat any inflammatory foods, primarily anything with wheat, corn, sugar, dairy and oils rich in omega 6, I get angina-like pains if I exert myself too much. This goes away 2-3 days after eating such foods.

Although clearly not the cause, I think inflammation is a major component of not just ME/CFS but probably most chronic health conditions.

 

[Eeyore]

The extra inflammation is probably of immune origin and likely gives us higher than normal cardiovascular risk. Cholesterol isn't really the cause of atherosclerosis - but high cholesterol DOES indicate higher risk - both are the result of inflammation.

Not all docs agree with this - and it's oversimplified (cholesterol does play a role in the plaque formation in blood vessels) - but the basic problem is inflammatory. Your body makes more cholesterol as inflammation increases to compensate for the damage of inflammation.