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  • Reply to: Mitochondrial Disease and Toxins   1 year 8 months ago

    I found this teleconference VERY interesting and definitely worthy of promoting. Will there be a link posted to Dr. Wallace's article PLEASE and SOON!!

  • Reply to: List of Medications to Avoid   1 year 10 months ago

    Can you take prozac when u have mito.?
    I thought no.

  • Reply to: Hydration   1 year 10 months ago

    I can relate to these issues, particularly with yours, beck7422. As I have severe Gastroparesis/am cachexic, I am on TPN clear bags (my cholesterol is 339 and rising rapidly/LDL 233 and rising rapidly), and FIVE Liters of Lactated Ringer's via Portacath, 5X a week. If I DON'T use the Ringer's or the TPN, I go immediately into hyperchloremic metabolic acidosis, along with sudden drops in glucose (the last time I had a "flare," I was drinking water that day, and my glucose dropped to 45, but I did not know it until 6 hours later, when I was nearly comatose. I find that the only drinks that do not dehydrate me are either diet coke/diet mt. dew/ or these Polar Sparkling Ice drinks (which I am mostly using now). If asked to fast or use just water, I could drink gallons and my mouth would stick closed, I would be that dry.

    People keep saying that I'm causing my problems by not drinking water, but the only way my labs will stay reasonably stable is if I do the 5 Lactated Ringer's bags (the regular saline totally dehydrates me as well- I can feel it sapping all my resources away). I also cannot drink any goopy sugary drinks or regular soda (it makes me throw up- allergy to corn syrups etc.) I can eat solid foods with a little sugar, but only after a lot of protein to keep the glucose up.

    I have found that increasing the LR and having it by Port (or IV) has helped with movement of bowels somewhat, but it takes a few days to kick in when de-accessed for two days. I'm just trying to save my colon, and want to still eat as long as I can.

    The Diet Coke also helps move the bowels (sometimes). I, too, have low Carnitine.

    Thanks for this forum- I always thought I was nuts for thinking that water was dehydrating me, but it's really true. If I had an endless spigot of water in paradise, I'd die of dehydration.

    Pretty darn weird- anyone else allergic to Vitamin D?

  • Reply to: Keeping Your Cool: cooling vest types, sources, financial assistance   1 year 11 months ago

    I found a shop on ETSY that does Cold Pack Cooling Vests that are actually cute. All of the other kinds that I've found look like straight jackets. I got one from these guys that has Doctor Who's TARDIS on it. They cost a whole lot less then anywhere else I've seen too. They only charge $50 and have a lot of different options. I know I can't be the only one who hates looking I need to be committed when I'm just trying to stay cool.
    etsy.com/shop/keepingyoucool

  • Reply to: New to this all, Leigh's is suspected   2 years 2 months ago

    Venessa,

    My heart goes out to you. I found your post trying to find any information I could about this wretched disease. We have been going back and forth with specialists for years about our daughter. We have had several misdiagnoses since we started trying to learn what was wrong with our daughter 6 years ago. We know she has mito disease, but we are only now being led to believe she has Leigh's. Still not conclusive, since we are waiting to hear back on all of the genetic testing.

    We didn't start getting real answers until we went to TGEN in Phoenix. It is a non-profit children's rare disease research center. We know people with children that have Leigh's and there kids are doing much better. Yes the disease is still terminal, but I believe there is hope with all of the advancements in genetics. We literally know twice as much as we did last year and with some prayer and luck they might just beat this thing in our children's lives.