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cordila

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About cordila

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  1. I'm reinvigorating this post because I've had a recent run-in with nitrates and am cobbling together a very wobbly theory and would love some comments/insight. Apologies for the subject matter but I was recently dx'd with a yeast infection south of the border. It has been a disaster to say the least and I was prescribed Monistat as treatment. My boyfriend picked up Monistat 1, which is a one-day suppository and topical cream program. Aside from the agony in 'that' area, I also noticed very strange side effects: abdominal ache, headache, and blue feet. After talking to my doctor again she
  2. Boy do I hear you on this! I, too, can make it though most any 'challenge' event but my crashes afterward are profound. I, too, have had to crawl to the bathroom and have not left my bed for weeks at a time. I did have an ACTH stimulation test which I passed but then crashed thereafter for 2 weeks. I followed up with the endo but since I made it through the test OK he had no idea (and was no interested in finding out) why I crashed. Same thing happened after the Tilt Table Test. I went to 70/40 BP 130 in 4 minutes but after they put me back and filled me up with fluids I still wasn't OK.
  3. Angela - I have many similarities to what you're experiencing: suspected MNGIE (I dont' think I have it either) low carnitine levels GI dysmotility periferal neuropathy ptosis (droopy eyes) I take a compounded supplement that includes carnitine as Carnitor and it works well but it all breaks down when my dysmotility acts up (which is often). When that happens I can't take pills by mouth so the whole thing breaks down. I also have elevated pyruvic acid levels but not lactic acid levels (they generally consider elevated levels of both to indicate mito - so I have them all confused). Megan, your
  4. Wow! That is really amazing! 5 miles a day. I am going to focus on your successes until I have my own! Starting tomorrow I am going to get serious about getting moving. It's clear that it's doable - I think part of me felt like I might completely bottom out by doing so but from everyone's stories I can see that it's not the case. Even if it knocks you out you all are still doing it! Thank you for the inspiration. I'll let you be the boost that gets me moving my (saggy) tail again.
  5. Moving over not moving. Check. I can do that. The problem with moving at my pace is that my pace is currently a dead stop. Ha! I'm feeling like I could use a little push but from someone who knows what a mito-push looks like and when to stop. In a crazy twist of fate, a private pilates studio just opened up in my neighborhood. Actually directly across the street! I have the same energy lifecycle as you, Julie. Start off in the morning with a bang and then a slow peeter to about 4 (sometimes as early as 2) and then a complete bottom out ending with a crawl into bed at 8. I'm really
  6. ... it has been over 18 months! That's awesome! How often do you do pilates? I've never done it. Do you feel like it's easier to do than other exercises? Reen, have you ever done any weights? It sounds like all your stuff is cardio (other than the 'arm thingy'...what's the arm thingy? ) I've heard people say that they exercise a few times a day. Does that seem to help vs. doing it all at once?
  7. I've looked at my flabby arms one last time! I can't take the sight of my atrophied muscles a second longer but when I go to work out it's a disaster. It's been 6 years since I've been dx'd with dysautonomia and about 9 months since I've been dx'd with mito. I hear so many dysautonomia people say exercise helped and so many mito people say rest rest rest is the only way to refuel. I recently purchased a treadmill and was walking on it at 3mph for 20 minutes a day 3x's a week. That lasted a short time until I could barely make it through the days anymore. I spoke to the trainer at the gym
  8. Hi Guys: I'm outing myself for an amazing opportunity to put a face and a story to POTS and dysautonomia. I live in Seattle and am involved in an event called Help-Portrait (www.help-portrait.com). I was thinking to myself this morning it would be a great outlet to put a face to POTS and people living with dysautonomia. I know everyone always tells us how we look so 'normal' but they don't understand how dysautonomia can impact our ability to financially and physically care for ourselves and our families. If you live in the Seattle area and would like to (bravely) have your picture taken an
  9. Hi Naomi: I honestly don't know about Boatman. I didn't stick around in NYC long enough to know how far/deep he actually goes...
  10. Marcia: I was tested for celiac and tested negative however I do have a powerful gluten intolerance. Most of my neuro symptoms were the cause of, or aggravated by, gluten. I've been GFCF for about 3+ years and it's made a big difference. My mom is taking something called TOTAL MITOCHONDRIAL by Nutri-West. I can't take it though because it contains wheat (so that means you can't take it either, right?). However here are the ingredients: Vit C, Vit E, Vit B1, Niacin, Folic Acid, Selenium, Maganese, Zinc, Copper, Magnesium, Sodium, Niacinamide, Vit K, Alpha Lipoic Acid, CoQ10, Acetyl L-carnit
  11. Hi guys: Thought I'd bring you up to speed on an interesting development. This summer my mom came down with CIDP - Chronic Inflammatory Demyelinating Polyneuropathy. It's the chronic form of Guillain-Barr? Syndrome. Both are neurological and attack the ANS. My mom has a bunch of autoimmune disorders like Lupus, Rheumatoid Arthritis, Raynaud's, Shogren's, etc. The CIDP was just a new disease to add to the mix. We've both been curious if she would benefit from my mito cocktail. She's been seeing this new doctor who gave her some mito supplements that have most of the mito cocktail element
  12. Hi everyone, Thank you so much for taking the time to reply. You gave a lot of great ideas and I am going to get Byron Katie's and Andrew Weil's CD's for a start. I did watch a bit of BK's youtube video and one of the things she said was 'what would your life be like without your story'? In this case, my 'story' is 'my life would be so much better if I wasn't sick.' That's what I tell myself and that's what I generally believe to be true - but if I free myself from that story- what's available to me? For starters, I could be grateful that I have an amazing boyfriend who, just this morning wh
  13. I'm hoping someone here can help me with some tricks to help me manage when life just goes bat s**t crazy on you! This last year has been one of my most difficult - and that's saying a lot considering the last 5 years have been pretty pathetic. But in 2009 I dealt with some of the top stressors in life and without going into the tragic details they've basically hit me on all fronts: financial, relational, health (mine and my mom's), familial, work - pretty much any and all stress fronts - WHAM! I'm trying to do all I can to help myself recover but honestly, with these constant blows I'm ju
  14. I have swallowing trouble. My mito doctor says it's due to dysmotility. My biochemical doctor says it's due to acetylcholine deficiency. All I know is sometimes I put food in my mouth and all of a sudden I just can't swallow. It's in there and I want it to go down but I can't get my muscles to initiate a swallow reflex. When this happens my boyfriend and I say my 'swallower's broken'. I have no idea what causes it but it can be very scary and frustrating. Here are some things I have learned around this issue: 1. hot liquids seems to bring it on 2. when it starts, i can't force food do
  15. Dr. Brian Boatman in NYC diagnosed me. I wasn't there for very long so I'm not sure how he'd be with long-term care but he dx'd me immediately after going to countless doctors. He gave me a full check up with a tilt-table test, 24 holter monitor, cardio ultrasound, and of course blood blood blood. He started me on Florinef and told me to salt and water load. The thing I liked about him best (aside from finally getting a DX) was that he was rigorous about not letting me use the term 'panic attack' or 'anxiety'. He told me 'this is NOT all in your head. Your symptoms are very real and you
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