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  • Reply to: Mitochondrial Disease and Toxins   1 year 4 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 6 months ago

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

  • Reply to: Hydration   1 year 6 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 7 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: List of Mito Specialists   1 year 8 months ago

    I also live in the Buffalo area and was looking for a specialist when I saw your comment. Although it is from several years ago, if you see my note here, I'm wondering if you've had any luck finding a specialist in the area. Managing the pain, both physical and mental at this point, is a daily struggle and I've been turned down by many Drs. Or groups who say they won't treat mito. I'm hoping you've have more success than I have with locating someone in the greater Buffalo area that can help. Thanks.

    Sher