toddm1960

Just a note anyone that thinks they may have mitochondrial problems, BB do interfere with the avilability of CoQ-10 into our mitochondria.

Inhibition by statins and beta blockers

Coenzyme Q₁₀ shares a biosynthetic pathway with cholesterol. The synthesis of an intermediary precursor of coenzyme Q₁₀, mevalonate, is inhibited by some beta blockers, blood pressure-lowering medication,^[23] and statins, a class of cholesterol-lowering drugs.^[24] Statins can reduce serum levels of coenzyme Q₁₀ by up to 40%.^[25] Some research suggests the logical option of supplementation with coenzyme Q₁₀ as a routine adjunct to any treatment that may reduce endogenous production of coenzyme Q₁₀, based on a balance of likely benefit against very small risk

Julie I get that same feeling in not only large muscle groups, but also in fine muscle groups. It's a big reason I had to stop working, and I had a desk job. This kind of muscle weakness should be looking into further........it's not normal.

momtoGiuliana, with either your hashi or your pots do you experience upper body muscle weakness? My muscles are so weak they burn with lactic acid pain even from doing a minor activity...

Your list of diseases didn't include mitochonrial disease, just from your statement above this should be your next step. Check on www.mda.org and look for the closest MDA clinic to you, it's a good start if everything else has been ruled out.

This research highlites how mitochondrial dysfunctions can be the root cause of so many diseases. Once it affects your brain stem any function can be compromised, i.e. central nervous system or autonomic nervous system.

I will say in my case it was a huge relief to get the diagnosis, I had been chasing it for half my life. It does make it easier to live with feeling so bad so often knowing what's behind it all.

I wish I could tell you I've found a mito cocktail that has made me feel better, but at this point nothing has improved any of my symptoms. I currently see the metabolic neurologist at the MDA clinic in my area, she sees a good amount of mito patients. She feels very strongly that even though the mito cocktail isn't making me any different, it is slowing the progress of everything, so I continue to take it. That is one point I can bring up, the place to start looking for a mito dianosis is at the closest MDA clinic to where you live. If there are other mito patients in your area I'll bet that is where they're being seen. That reminds that MDA.org is another good site for mito information.

Ask to have a Bravo ph (brand name) It's a capsule they attach to your esophagus during a regular endoscopy, it's clipped in place and sends readings to a recorder you wear on your belt. In 48 hours it slufs off and is excreted. It's so much easier and gives much better results because you're so much comfortable. Good luck with your tests.

Mine started at 15, I'm now taking 50,000IU of D2 twice a week and 2,000IU of D3 5 times a week. Five years down the road and I still can't keep my overall D level above 35.

I've spend half my life trying to find a cause and affect, as many have said what helps one day, doesn't the next.

It hits home the point that no one really knows the true root cause of POTS, we're just treating symptoms. Whether its high NO or low NO or increased renin or a NET deficiency........ Once the real cause is known maybe it will explain how one medacation will work one day and not the next.

The reason mitochondrial diease is so difficult to diagnos is it can affect and organ any cell in your body. Or in the case of dysautonomia the lack of ATP can affect how our nervous systems functions. Mitochondrial disease in the past was only thought to be a defect in your mitochondrial DNA, reseach has now found most adult cases are in defects of your nuclear DNA that interact with your mtDNA and cause a breakdown in one or more of the 5 complexes in your oxidative phosphorylation process. The list of mito systems can be huge, check out these two sites and look at their symptom lists: www.mitoaction.org and www.umdf.org Both are very good and have a lot of information.

The short answer to your question on breathing problems is yes, I had been to two different pulmonologists looking at respiratory problems before my mito diagnosis. Good luck in finding some help and welcome to our little dysfunctional group

This group will be known here after as the "inbtween flow" group...............

That's what gets me, I'm the same way I only over constrict when standing. HR & BP increase, and continue to increase as long as I stand, but feel awfull when taking tumeric. I also take 1,200mg of magnesium each morning. I fit everything in the normal flow description except for high NO.

Remissions are a pretty normal thing, live it up, enjoy your life and don't look back.

Great time for this post, I get this feeling all the time, everyday as a matter of fact. Keeps me eating all lthe time. I'm wondering also if we might have a glucose storage problem. I'm looking for a neuroendcrinologist now, not sure if they'll be able to help but it's a good place to start.

Katie yes PENE, and PEM are just exercise intolerance, it's the rebound affect of doing too much. It could be exercise, it could be running to the store or going to a doctors appointment. Any of the above land me back in bed for 24 or 48 hours. I was just wondering how activity affected others on the forum.

I call them internal termors, I had a hard time describing this symptom to doctors. I get this everytime I do too much, stand for too long or picking things up.......like laundry. For me it goes hand in hand with my bone crushing exhaustion, it's something I get a couple of times a week.

I've been working with my doctor to try and get Marinol approved with my insurance company. Neither of us is sure will work the same way, but it would be nice to try it. To date insurance won't approve it for POTS, **** my insurance won't cover Co-Q-10 for treat of my mitochondrial disease.

PENE is Post Exertional Neuroimmune Exhaustion, it's the new term for PEM post-exertional malaise.

Drooping eye lids are big mitochondrial symptom, along with all of the muscle pain you're talking about. I have all of the same things, it's worth you doing a little research on and then bringing it up on your doctors visit. Good luck I hope you find some answers.

I'm still in the retrovirus camp for a couple of reasons. First it explains the the out breaks and clusters seen, and second once infected the retrovirus can damage the DNA causing the mutation behind the autoimmune response, that we then can pass on. I think this study is an awesome start, but really just scratching the surface. I don't want to see the retrovirus research end because of this study.

I have the daily waxing and waning, but overall I'm much worse off than I was 6 months ago or 6 years ago. My progression is definitely down hill, I'm sure it's mostly due to the different root causes all of us have.

Marijuana increases NO and is a vasodilator, I've found very small amounts keeps my orthostatic hypertension from slyrocketing. Try using less and less until you find the least that still helps your symptoms.

For those of you that can exercise, how do you feel the next day or two days after? Do any of you have PEM (or PENE as it's now called?) Man my muscles cramp and quiver and are so weak even doing light resistance movements laying down, and like I said the next day I feel like I've been hit by a truck.

I continue to try, I'll never give up trying, but 6 years later I'm still at square one. If I look at how I felt 6 years ago, I'm much worse off today. No matter how little I do or how slow I start I'm wipped out for 24 to 48 hours after doing something. For me it's major exercise just to do minor housework, the next day always feels like gravity triples over me.

I'm not sure if many on here have those joint aches and pains, but I sure do. I'm just like you every joint in my body hurts, it feels like I'm frozen in the morning or after sitting for only a few minutes. It starts at my neck and runs all the way down to my ankles.......even the joint in my toes are stiff and sore. I've had ANA levels checked and everything comes back normal, though I am possitive to HLAB27....which is a whole another story. Good luck and I'm glad you've found us

One quick note on beta blockers, they also are toxic to your mitochondria and increase oxidative stress. Everytime I had tried them I was totaly wipped out, internal shakes and nearly bed bound. Just another one of those sneaky clues now that I look back on things.