Mitochodrial Disease

[toddm1960]

My results from Dr Shoffner should be back any day, if he does find a varient I'm hoping it one he's doing research studies on. Right now I'm taking 1,600mg a day, this stuff is crazy exspensive even with the mito pricing we get from Epic. I have to say I don't feel any different taking this much Q-Gel. I'm wondering what drug or drugs his studies are using?

[beggiatoa]

I've using Ubiquinol, which is a better absorbed form of coQ10. It's apparently 8x more bioavailable. So, I'm using 200 mg UB which equals 1200mg Q10. Great stuff.

It's a little pricy but it's 150 softgels, at one at day, and it's doing wonders for me.

http://www.iherb.com/Healthy-Origins-Ubiqu...gels/11782?at=0

[tinkerbella]

Hi everyone....I'm sorry I haven't been around more. Things really went down hill after my biopsy. Whatever energy I had, it really got depleted and I feel like crapola ~ What a journey this has been ~ Got my script this week for the Mitochondrial Cocktail Prescription ~ 17 vitamins compounded ~ I was told wait till you see the size of the box that will arrive. I'm waiting till I can call the insurance company next week, as they never saw this chain before The doctor asked me what my nutrition was like? I got kinda scared. I'm on the MITO IV PLAN now 18 hours day/night potassium/ sod chloride glucose..as more and more it just gets easier to live off healthy shakes and I'm too tired to eat. NOW with weekly blood draws I'm anemic and craving steak, potatoes salads, ice cream ....I have such cramps in my legs ....right down to the bones. I TOLD him I FORGOT to tell you!!! Told the doc I was having a hard time being foggy (Potsie) he said it might be from the MITO ~ I think I'm in DENIAL all over again, like when I was dxed with Pots

[Rachel]

Thanks for stopping in again, BellaMia. It's good to hear from you. I'm sorry that things went downhill after your muscle biopsy. Do you think it was from the physical stress on your body of going through surgery? I'm glad you were able to get a diagnosis, but sorry it has to be such a hard one.

Please let me know how the mito cocktail works for you. I'm interested to know if you experience some relief of symptoms.

I'm on a small mito cocktail right now. I haven't received an official mito diagnosis, but my docs think I have it, and are treating me for it. I'm still debating going through with the muscle biopsy. I'd like to know for sure if I have mito, but I wonder if the stress of surgery is worth it. If a precise mito diagnosis would help with creating a better mito cocktail for me, though, I think I'd really like to do it. Anything that will improve a bit of my quality of life. I'd really like to be able to play with my children more and spend more time with my family.

You're in my thoughts.

Blessings,

Rachel

[RichGotsPots]

what are the main symptoms for this, any breathing issues?

[toddm1960]

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

[RichGotsPots]

Hey Todd, I'm beginning to think we all have this. And it related to my breathing energy (ATP) but it doesnt seem like if I found out I had it, it would help to even know. How is it helping you to know that you have it? Looks like they have no real treatments... And I think personally especially in us adult onsets it's a secondary issue cause by POTS or our Autonomic and Vascular issues.... I don't know.. I've tried taking CoQ but didnt help. is there anythingthat helps you majorly that I can at least test out?

[TheLivingDead]

ive done research and most of it leads me to mito but i dont have alot of what is being described. ive had pots for 2.5 years. there had been times when i was very weak but i still work...manual labor and hard most days without much more tiredness than a usual hard days work, but other days im really beat and i daze off when i get home and sit. its like i go into stand-by mode.

i did have alot of the basic test done about 2 years ago when i was diagnosed. i dont have ins. now so im outta luck with further testing for mito.

i guess im wondering if there is anyway to tell if i may have this without these test. not to know that i have it but to steer me down that path of mabey mito is it.

as i said i do have alot of the disauto. problems but alot of the things listed by the people with mito i dont have. mabey its just a matter of time for them to develop further or is it always a back and forth kinda thing.

sorry if im not explaining well im kinda foggy at the moment.

[toddm1960]

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.

[RichGotsPots]

I just found a study that is a big mito eye opener, I'm going to post it for everyone

"Mitochondrial Dysfunction in the Hypertensive Rat Brain

Respiratory Complexes Exhibit Assembly Defects in Hypertension"

[toddm1960]

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.

[RichGotsPots]

Yup, and so I'm trying to actually tie together how it's affecting us. I think it's mainly affecting us through localized hypertension that is varies in a similar to how our heart rate varies on postural positions. By knowing that then they can start giving us treatments that target that. For example by knowing we have a fast sinus heart rates they can give us sinus selective meds and lower it. The problem is that almost every Dr. I've talked to or read about has been prescribing BP medicine to combat heart rate issues and even lowering HR issues doesn't help that much on the over systemic level. So far I've identified 4 different localized hypertension illnesses. Urinary, Ardenal, Pulmonary, and Neurological. each of these cause different issues. Each of them is tackled by different types of doctors all prescribing different types of meds. If we cure just cure Mito issues maybe they would all clear up, except they are so far from that, that they are actually prescribing holistic cocktails... For now I think it's about identifying which local BP issues we have and tackling them one by one and maybe getting lucky..

[RichGotsPots]

Also found this:

Another potential treatment is Coenzyme Q10,^[32] which a meta analysis of 12 studies found reductions in systolic pressure of 10–17 points and a reduction in diastolic pressure of 8–10 points^[33] with doses of roughly 200 mg/day.

So this MITO vitamin is having affects on BP