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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 said that she had wanted me to do the Monistat 7 treatment, a 7 day cream injection treatment. I did day one yesterday and am so ill today (abdominal ache, fatigue) that I am stopping treatment. Here is where it gets interesting: Monistat medicinal action is due to miconazole nitrate cream. The miconazole is an anti-fungal agent. The cream can be absorbed by the GI track even if used vaginally. Apparently, nitrate toxicity has an oxygen component: Nitrate toxicosis in humans occurs through enterohepatic metabolism of nitrate to ammonia, with nitrite being an intermediate[3]. Nitrites oxidize the iron atoms in hemoglobin from ferrous iron (2+) to ferric iron (3+), rendering it unable to carry oxygen[4]. This process can lead to generalized lack of oxygen in organ tissue... (Source Wikipedia) When I think about my blue feet, it was clear as day that I was not getting enough oxygen in my extremities. Aside: I do not usually suffer from blue feet. I did more so when I was eating gluten. I have been gluten free for approximately 4 years. This is what is said about nitrates and those who have trouble with them: Some adults can be more susceptible to the effects of nitrate than others. The methemoglobin reductase enzyme may be under-produced or absent in certain people that have an inherited mutation[6]. Such individuals cannot break down methemoglobin as rapidly as those that do have the enzyme, leading to increased circulating levels of methemoglobin (the implication being that their blood is not as oxygen-rich). Those with insufficient stomach acid[7] (including some vegetarians and vegans) may also be at risk. It is ironic that the increased consumption of green, leafy vegetables that typically accompany these types of diets may lead to increased nitrate intake. A wide variety of medical conditions, including food allergies, asthma[8], hepatitis, and gallstones may be linked with low stomach acid; these individuals may also be highly sensitive to the effects of nitrate. (Source Wikipedia) However back to the oxygen link, I've been working with Dr. Derrick Lonsdale, former head of Biochemical Genetics at Cleveland Clinic. He believes dysautonomia stems from an error in oxidative metabolism originating in the brain and effecting the citric acid cycle. He believes that oxygen is the spark of life and lack of oxygen in the cells is an essential component in our dysautonomia. So the questions this experience raises for me are: 1. Those of you who have problems with garlic (I do too, incidently), do you notice blue hands, feet, or lips when you eat it? 2. Those of you who have problems with garlic, do you also have problems with other foods? 3. I am also very sensitive to barometric pressure changes and humidity and flying (all low-oxygen environments. Is anyone else? 4. Are there any other oxygen tie-ins that anyone can think of? -Waterbaby
  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...for days! The other interesting similarity is that I have been placed on SSRI's and SNRI's in the past which only wildly exaserbate my symptoms. I have a dx of dysautonomia and a 'highly likely' dx of mitochondrial myopathy for Dr. Fran Kendall, one of the few mito experts in the nation. I speak with her tomorrow regarding new mtDNA testing which does not involve muscle biopsy (invasive surgery is not on my list of things I withstand with grace). To your question of balancing crashing and life and understanding your limits - I can simply reach right out to you and say PREACH! I struggle with the same thing. My boyfriend seems to be much better at monitoring and measuring my energy than I am. We established a new goal in our house that I maintain 50% and greater energy level. 100% is a fantastic day and 1% is an all-out-in-bed-lights-out crash. Having that goal does help me filter activities with 'is this worth the energy expenditure' and 'is it possible that doing X will lead to a below 50% level'? But ultimately, I mostly continue to fail at this quest. I do not know where my limits are. What one day I am able to withstand with ease, the very next day will put me out for a week. I try to listen to my body first thing in the morning. I find this is the time of day where I can tell if it's going to be a 'good day' or a 'bad day' or an 'ok day'. Based on the day grade, I can schedule my activities accordingly - even if that activity is folding laundry and that's it. Now the larger question (that I struggle with too) is how to re-define yourself. If you've defined yourself as an over-doer or overachiever and someone who doesn't believe half your symptoms (or ignores them - as I often do) then part of what you're struggling with is your very definition of self. I can speak for myself and say in my pre-illness life, I saw myself as this active, on-the-move, go-getter and when my body pushed pause on my life then I had to come face-to-face with the very definition of ME. If I was no longer that person, who was I? And moreover, what if I LIKED who I was before? Could I still try to be that person? I make plans in accordance with the former me, yet 99.99% having to cancel because the 'new' me is my today reality and I struggle with how others see me because of this. And of course it also impacts how I see myself. You know who I feel like? I feel like that irritating person who lived in New York City and moved to Nowhere's Ville Idaho, and ALL THEY CAN TALK ABOUT is New York City. The former 'me' is my personal New York City. I used to do this, I used to do that...but that not only makes it really hard to accept who I am today, it also keeps people at a distance. If I don't allow people to know and experience who I am today, if I'm constantly reminding them (or telling them stories) about who I was, then they can't get close to me because I won't get close to myself. I would say I am no longer in denial that something profound and possibly unchanging has and is happening to my body. But I'm also a far cry from acceptance. I don't want to be this person that identifies with my illness, symptoms, limitations. I want to be a person that identifies with what I can do. Unfortunately, what used to be on my 'can do' list has changed. But that just means I have to fill it up with other things. xxWaterbaby
  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 comment of 'energy conservation' so hits home to me. I'm recently been really confused as to what to do with exercise and pushing myself in general. I hear so many people with dysautonomia say exercise, even when extremely difficult, brought about improvements in energy. But since mito is also suspected, I can lapse into days in bed after the most minor exercise (we're talking 20 minutes on the treadmill - walking!). I was doing really well January - March but April arrived and with it Spring allergies and I'm completely wiped out. I know there are others on DINET that live in the Pacific Northwest (Seattle) like I do and since it's such a high growth area there is plenty of pollen to go around. I now consider myself lucky if I can survive the day sitting upright - I consider that an accomplishment. I am working with Dr. Fran Kendall, who is a mito expert and has a virtual practice (great for those of us who can't travel). Recently Dr. Kendall reached out to me and asked if I wanted to conduct mtDNA testing. I've done the organic acids, amino acids, etc testing that can be done on urine and blood but drew a line at muscle biopsy. I know it's the 'gold standard' in mito dx but I also know that that kind of body invasion would set me back by a lot. I'm tempted to go through with the mtDNA testing but I'm not sure exactly what can be learned by this testing to warrant it's $1100 out of pocket price tag. I continue to be astounded by how many similarities we all share and hold out hope that we're on the verge of further discoveries that will bring us all some healing. -Waterbaby
  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 hoping exercise will do something for me. If not in the vain-put-back-my-muscles arena then hopefully in the increased energy zone.
  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 across the street who said that weight bearing exercises (vs. aerobic exercise) would be better for me in regard to building up ATP. I used to be a huge gym and yoga bunny and prided myself on my fit little frame. Now I'm a stick covered in flabby flesh and I really can't take the site of myself anymore. And separate from the pure vanity of it all, I want to feel better. Does exercise help? Does anyone else deal with mito/dyauto and notice a difference with exercise? Does anyone notice a difference between weights and walking? Is it helping? Is it hurting? Do atrophied muscles make you cry? Running - not an option Walking - ok but I fatigue fast Swimming - great but I am not close to a pool Yoga - not happening. The upside down and twisty-twisty of it all brings up gastrodrama extraordinnaire Weights - ??? Pilates - ???
  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 and tell your story, please read the link below and contact me. http://bit.ly/4erMML That link is connected to my company. That's me - waterbaby.
  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-carnitine, Acetyl Cysteine, L-Glutathione, L-Tyrosine, L-Glycine, L-Glutaminc Acid, Phosphatidyl Serine I'm just now starting to gingerly get back into some supplements but I figure it'll take me several months before I can ramp up to full throttle. I am taking UltraClear Sustain for my tummy during this no-supplement time and it packs a good punch while tending to my gut. It also gives me some protein, carbs, and fat since I'm down about 16-20 pounds since August - and I'm a pretty small nugget to begin with so I'm verging on skeletal - not cute -WB
  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 elements in one pill. The dr said that taking them simultaneously somehow has a more powerful effect. She was told to take 6 tabs in his office and she says she felt the effects immediately. Here's the crazy thing - she's 95% back to normal! You have no idea how amazing this is! For 6 months my mom could barely walk, couldn't feel her feet, legs or hands, was completely void of energy and was deteriorating fast. She was hospitalized several times and given an IVIG - plasma replacement. They did that several times over the course of 6 months and it had mild, if any, success - and always only for a short time. Since taking the mito cocktail, my mom is BACK. To me this provides even more evidence that I (we both) have a mitochondrial disorder - as many mito disorders are mDNA, or passed through the maternal DNA. The news on my progress is not as winning However I'm going to cut myself some slack as it has been a very rough year (understatement extraordinnaire!). I'm still recovering from surgery (October) and my GI track has shut down such that I have been unable to take my supplements with any regularity. I will report back once we are into 2010 a bit more as I anticipate I will have had a few months of 'normalcy' by then supplement wise and can give a clearer picture as to the effects of the mito cocktail. PS - all my blood/urine tests came back inconclusive. The only thing left is to do a day/night urine test and a muscle biopsy. I'm foregoing the biopsy. Just going to take the pills and see what shakes out. -WB
  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 when I was in a heap of tears said 'I got your back. I will not let you fall.' The funny thing is, when I was 'normal' I dated nothing but jerks! And now, 'sick', I have this amazing man in my life. So that's just one (HUGE) area where my story is actually 180 degrees wrong! JaneEyre9 - I like 'saying no to non-essential tasks'. Sometimes I find it hard to know what's essential. Like going over to a friends house for dinner could be non-essential but getting social stimulation is also essential. Hard to know sometimes... I think for now I just have to get through the move and my last 3 clients of the year and the holidays. Everything else is gravy. Marcia - your post made me giggle in that we are all SO different! Almost everything you listed (5HTP, chocolate, caffeine) would land me in the 911. How is it that the same malfunction can create such totally different remedies? I am, however, totally going to take on your tip of letting other people's problems be their own problems. That can be a tricky one especially when they are people close to you - but that simple step would probably save me a lot of worry! Thanks you guys for all your tips and general words of encouragement. I hope 2010 is a year of wellness - for all of us. -WB
  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 just trying to minimize the damage. Unfortunately, my stress reserves are so low that any little activity puts me down flat. Today I had a client meeting and ended up in the bathroom on the floor. I just don't have anything left to give. The worst part is I don't see any light at the end of the immediate tunnel - at least not until the end of the year. My boyfriend and I are moving in 2 weeks - and that's not terribly relaxing... What makes me the most sad is I am having a hard time just even being around my boyfriend. He is so wonderful to me and supports me fully but right now I am so tired that even talking or just BEING around someone is exhausting. I wish everyone would just go away and allow me to lay in bed for a solid week or two. I honestly feel like that's the only thing that might help at the moment. Does anyone have any tricks for dealing with mayhem? I just need life to relax and cut me a little slack - but - I guess that's what we all need, right?
  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 down - i just have to wait 3. my swallower often 'reboots' during sleep - i find the next morning i usually can swallow OK I'm sorry your swallower's broken. It's no fun
  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 need to understand you have these panic feelings because you are symptomatic.' Again I didn't see him long b/c I ended up having to move back in with my parents in the Pacific Northwest - but I thought he was really amazing.
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