tag:blogger.com,1999:blog-67075053232449373742024-02-06T23:01:10.765-05:00Infinite Daze"Life is never quite like the brochure." -Chuck LorreUnknownnoreply@blogger.comBlogger630125tag:blogger.com,1999:blog-6707505323244937374.post-90935864900139970192020-02-08T02:09:00.001-05:002020-02-08T02:09:48.429-05:00Food Glorious FoodI have a long and sordid history with food... mostly caused by the diet industry. I'm fat. I've been fat since I hit puberty. For the most part I've resisted dieting but succumbed once in high school and once in the late 80s. Both times I lost weight which I gained back during the couple of years afterwards which keeps me in line with the science studies on the matter.<br />
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Then there is the health side of things. I knew my body reacted badly to some types of food. I was raised in the era of Wonderbread and Twinkies. My mother did her best to put meat and veg on the table for our meals but we were also poor and the good stuff ran out pretty fast. If we were still hungry jam sandwiches were often the solution. <br />
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When I went off to college, I did the whole vegetarian thing and ate lots of grains, beans and tofu. Then the new food pyramid came out encouraging us to eat 9-12 helpings of grain/bread per day. I was like "woohoo!!! I LOVE sandwiches!". I also learned about hypoglycemia around that time and it sounded really familiar. Back then it was considered quack science so I didn't get very far with it.<br />
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After graduation, I dropped the vegetarian thing out of practicality. Working full time I didn't have time to prepare food from scratch everyday and restaurants didn't serve anything like the yummy meals available today. A vegetarian meal often consisted of cheese pizza.<br />
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Then the 80s hit and fat became the boogeyman. This is when I went on my first legitimate low fat diet. While I initially lost a ton of weight, after eating low fat for 20 years I gained a ton of weight. I became prediabetic and had heartburn. I became intolerant to gluten and went gluten free. Luckily it was before pre-made baked goods so if I wanted something GF I had to make it from scratch which meant no more bread, cereal or pastas.<br />
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This is about the time I revisited hypoglycemia and found the glycemic index. I rejiggered my diet so that I ate low glycemic foods and changed the time of day when I ate certain things. My energy levels improved but my weight stayed the same.<br />
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Once I contracted CFS/ME I learned about the Paleo Diet, GAPS diet and Weston Price Diet. I decided to combine all three and went on whole foods paleo diet that included the healing foods from GAPS. While I felt better, my weight didn't budge then I started gaining again. Over 8 years my weight crept up by ~100lbs and I was now at 322. At 5'2", I was around 60 BMI. UGH<br />
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Then two years ago all hell broke loose with my gut. I've been having problems with it on and off since the first day I contracted CFS/ME. I'd go through bouts where I couldn't eat solid food and fat bothered me the most. Lots of nausea, IBS, diarrhea, etc. But, this time it was accompanied by brutal stabbing pain in my left side. I went through a huge battery of tests. The results were fatty liver and fatty pancreas. Nothing that explained the ab pain or the 'not being able to eat' problem. The did find evidence of stomach lining inflammation but nothing active. I got put on meds. <br />
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Then I discovered that keto is the only fix for fatty liver. I started paleo again. I weaned off the stomach meds. Then weaned off carbs to keto levels. My meals consisted of protein for breakfast, lots of veg and a side of meat for my main meal and a small protein and fat snack for the third meal. Weight started dropping off even though that wasn't my goal.<br />
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My liver numbers came down. My blood sugar numbers were good. I was no longer prediabetic. I lost 18 pounds. Then my stomach acted up again and I couldn't eat any fat. It was back to turkey sandwiches and chicken soup. I had to go back on the stomach meds. This cycle happened twice more: keto diet, gut acting up, paleo diet, gut acting up, etc. <br />
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Now I just can't seem to get back in the groove. I last a couple of days and then cheat. I use the keto rules to cheat on paleo and the paleo rules to cheat on keto. I can't quite figure out what has me stuck. The cycle of diet/gut fail or the fact that I used to be so poor that I often didn't get enough food to eat or my outright hatred of diets/weight control. <br />
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Thing is I felt GREAT on keto. I had tons of energy; my PEM was drastically reduced; and my brain fog lifted so I could read again. And my liver was healing! My doctor did a liver biopsy this year and it came back with no fibrosis which really shocked him. Even my liver scan number came down by a lot.<br />
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I feel defeated. I feel out of control. I just can't seem to do this again even though I did really well before. I managed 2 years the first time I did paleo and 4-5 months with the last year's paleo/keto round. There is SO much junk food on the market now. It makes finding 'keto' snacks easy and on bad days it is so hard for me to prep fresh meals. I feel like a failure. Like I don't want to get better. <br />
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I want to come up with a food plan but I'm scared I won't stick to it again. I'll cheat too much. Right now I'm eating cough drops due to having a nasty upper respiratory infection and I refuse to use the sugar free drops because of the nasty stuff in them. That means keto is definitely out for now. I guess I'll start on paleo once I get off the cough drops. <br />
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Maybe I need to get my mind off weight loss and switch to liver health again. I still have a ways to go to fix it. My numbers improved but I still have a fatty liver. I can't make up my mind if I want to do this cold turkey this time instead of my normal easing into things. Then again my body doesn't do well with sudden changes. I need to come up with a better plan. One that is both food and mental. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-36396173746629283022018-09-22T16:16:00.004-04:002018-09-22T16:46:23.408-04:00New ResearchNothing available commercially yet.<br />
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<a href="https://www.irishtimes.com/news/health/scientists-discover-promising-off-switch-for-inflammatory-diseases-1.3443334?mode=amp" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Scientists discover promising ‘off-switch’ for inflammatory diseases</span></a></h1>
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<span style="background-color: white; color: #414141; font-size: 16px;"><span style="font-family: Arial, Helvetica, sans-serif;">“The macrophage takes the nutrient glucose, whose day job it is to provide energy, and surprisingly turns it into itaconate. This then blocks production of inflammatory factors,"</span></span><br />
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<a href="https://www.iflscience.com/health-and-medicine/scientists-discover-the-root-of-autoimmune-diseases-and-how-we-can-treat-them/" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large; font-weight: normal;">Scientists Discover The Root Of Autoimmune Diseases – And How We Can Treat Them</span></a></h1>
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<span style="background-color: white; color: #222222; font-family: "Open Sans", sans-serif;">"the researchers dulled symptoms [of autoimmune disease] by suppressing the growth of </span><em style="background-color: white; border: 0px; box-sizing: border-box; color: #222222; font-family: "Open Sans", sans-serif; font-stretch: inherit; font-variant-east-asian: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">Enterococcus gallinarum"</em></div>
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<span style="box-sizing: border-box; font-weight: normal;"><a href="https://www.technologynetworks.com/neuroscience/news/brains-lymphatic-vessels-as-new-avenue-to-treat-multiple-sclerosis-309653" target="_blank"><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Brain's Lymphatic Vessels as New Avenue to Treat Multiple Sclerosis</span></a></span></h1>
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<span style="color: #333333; font-family: "Open Sans", "Helvetica Neue", Helvetica, Arial, sans-serif; font-style: normal;">"the brain and the immune system are closely interacting. When these interactions go out of control, pathologies emerge"</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-23850897357838684032017-11-19T02:39:00.000-05:002017-11-19T02:39:35.834-05:00The Key??New study indicates that there is a genetic defect that reduces the number of T cell receptors in the immune system which leads to the immune system turning on and not being able to turn off. This in turn leads to a feedback loop of inflammation, Krebs cycle malfunction, mito dysfunction and immune system activation. When the mitochondria crap out, everything craps out and it turns into a systemic illness.<br />
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4872418/">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4872418/</a><br />
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If this study is verified, then this is most likely THE cause of CFS/ME. It is the root of all the other problems. I'm just wondering if CRISPER could be used to repair the genetic damage and fix this illness once and for all. A girl can dream.....Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-52084525516337618032017-09-20T13:45:00.003-04:002017-09-20T13:45:36.241-04:00Leucine and KREBSThis is going to be short and sweet because I don't have time to hunt down the original paper links right now. Prudential is demanding that I prove that I still can't work again. Blergh <br />
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Davis et al have just shown that the immune system is haywire and the KREBs cycle is broken in PWME. Their mito are fine but don't behave fine when exposed to the plasma of PWME so something is broken in our blood not our mito. Our metabolites are also out of whack. <br />
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Along comes this article..<br />
Targeting "Broken" Metabolism in Immune Cells Reduces Inflammatory Disease<br />
<a href="http://www.scienceandtechnologyresearchnews.com/targeting-broken-metabolism-immune-cells-reduces-inflammatory-disease/">http://www.scienceandtechnologyresearchnews.com/targeting-broken-metabolism-immune-cells-reduces-inflammatory-disease/</a><br />
that discusses how our immune system essentially hijacks the KREBs cycle so it can make molecules to fight bugs (whether they exist for real or not). This leads to some weird ass biochem going on and of course inflammation. They developed a new protein that works well in mice and it is similar to Leucine. (LOL now I remember <i>WHY</i> I bought that huge tub of leucine!!) Hence, my leucine experiment is about to start. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-51881691365013619192017-08-11T04:31:00.002-04:002017-08-11T04:31:54.692-04:00The Four Letter WordI hate typing the word 'diet'. I hate being on a diet. I hate that society wants us to be a certain weight. I hate that people hate me just because I'm fat. I hate that I'm fat. I hate being fat. I hate trying to find 4X clothing that I don't hate. I hate not being able to move easily. I used to be lithe. I used to be able to get up from a chair or even the floor easily and smoothly. This sucks and it is why I'm on a diet. I'm tired of getting stuck in pieces of furniture or having to go to all fours to get up off the floor. Admittedly some of this is due to CFS/ME but even on my good days I can get stuck. Having a waterbed that is underfilled also doesn't help. I have to roll out of it since I don't have the strength to claw my way out. Okay so maybe not all of it is due to me being huge.... Having CFS/ME sucks too.<br />
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But I digress.....<br />
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I'm coming up on the two week mark. Things are progressing well. I've lost a few pounds. I'm still fiddling with the software tracker, cronometer. I ordered a scale for me that is goes up to 450lbs. I dug out the scale for my food. I've been very good at logging food, supplements, sleep duration, sleep quality, symptoms and activities.<br />
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Fiddling with the software has been an interesting experience. I'm almost obsessed with it but it's paid off. I actually watched the training vids and learned a few tricks that aren't intuitive. I've figured out how to put my own foods in if they aren't already in the extensive database and even put in recipes and it does all the math for me. [If you decide to go with this software, just note that typing in brand names will bring up an entirely different list than typing in generic food names. "yogurt" will get you a totally different list than "Brown Cow yogurt" and the brand name item often won't show in the list if the generic term is used. Very weird bug if you ask me but anyway...] Being able to actually see the macro ratios as well as calories has allowed me to adjust in real time what I choose to eat each day. I've cut way down on carbs and increased my fruit & veg intake. I keep trying to increase protein but I don't seem to make the minimum almost daily. It is only when I go over my calorie count that I eat enough protein. Sigh... Right now I tend to make the fat goal with difficulty, carbs always go over and protein under. <br />
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I set the tracker up for minimal activity/sedentary with a half pound per week weight loss. This allows me a baseline of 2070 calories a day assuming I burn 2320 calories doing nothing. I found I tend to go slightly over the 2070 mark but I'm happy if I keep it under 2320. Of course the few days leading up to the start of my period went higher and higher. I could always eat a horse the week prior to my period. I'm STARVING!! Now that my period started the hunger is abating and I'm settling back into a 2000 calorie day. If I'm having trouble with this amount of food I can't imagine how many calories I was eating prior to starting this diet. Geesh... no wonder I've lost weight already.<br />
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My official weigh in is Saturday morning but of course I couldn't wait. Right now the scale is on the same floor as me so I don't have to go upstairs to use it. So, I keep weighing myself every morning. I always gain and then lose water weight around my period so I'm still not sure what my stable weight is yet. My starting point was the doctor's office at 306.5lbs, which I confirmed when my new scale arrived. This morning I stepped on the scale and I'm down to 303.6lbs already!!! I'm only supposed to be losing a half pound a week and I've already lost 3 and possibly more! Looks like I might be losing 2 pounds per week which is fantastic! Maybe after this Saturday I'm moving the scale very far away from where I usually tread in the house so I won't obsessively weigh myself and keep it to once a week.<br />
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I am scared that this whole thing is going to devolve into an eating disorder. The last time I went on a serious diet back in 1992 I almost ended up with an eating disorder. Luckily I got pregnant and was forced to start eating again. Then in 1998 I read "What if Women Stopped Hating Their Bodies" and started eating what I wanted, when I wanted and as much as I wanted. It helped me get over the "you're not allowed to eat that" voice in my head. It helped me stop craving junk foods. I ate french fries so much their allure went away for me. I now only eat them if they are very good fries. This wasn't the case prior. They were forbidden foods so I MUST eat them. It was as much a defiance thing as a food thing. <br />
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After that point, I started noticing that some foods made me feel better and some food made me feel worse so I started tinkering with what I ate and when I ate it. I discovered the glycemic index and based my diet on those principles. I moved to a more organic whole grain type diet. I finally managed to get my energy levels on an even keel. I used to crash after lunch and want to sleep under my desk. Now I had energy over the course of the day and no longer wanted to sleep mid afternoon. Then I developed a gluten reaction out of nowhere and had to go gluten free. I did quite well for years but just couldn't lose weight so I decided to exercise more. I was strong, fit, had great numbers for the doc and I was fat. I was a fit fatty as they are called. Anyway....<br />
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After getting sick I did a Paleo Whole30 and then ate Primal for two years. I never lost weight on this diet contrary to all the Paleo weight loss miracles out there. However, this healed my guts sufficiently to let grains back into my diet. Things slowly devolved and I was eating lots of carbs at every single meal. I would eat a half a pizza for dinner without blinking. A bowl of pasta for snack. Breakfast sandwiches, lunch sandwiches. etc. Now I'm having to retrain myself yet again. I knew I hadn't been eating enough veg & fruit. I knew I was eating too many carbs. I just didn't realize how much. This experiment has been good for me. I both loathe it and happy that I'm losing weight at the same time. I'm learning things and that always interests me. <br />
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I do wonder how long I'll be able to keep this up? It will take a year to lose a hundred pounds if I don't plateau, which is an impossibility. Ideally I should lose 150lbs so I'm looking at another two years of dieting. UGH I would just be happy to get rid of my double chin and fit into my size 20 clothing again. I might even get off the CPAP machine!! Now that would be something to celebrate!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-70073239142787927832017-08-03T04:14:00.000-04:002017-08-03T04:14:06.814-04:00Sleep UpdateAnother experiment in progress....<br />
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I discovered that my new very comfy wedge pillow causes my sinuses to swell shut. It must be off-gassing something nasty. The cover stank anyway either from scented laundry detergent or dryer crystals. I like the smell at first whiff but can't stand sleeping on top of it. Anyway, hubs is going to wash the cover for me and I'm going to stick it out on the deck to bake in the sun for a few days. I would hate to add this to my growing pile of 'do not use' pillows. This is getting expensive. Plus this particular one is so darned comfy. I would really like to be able to use it. Sigh......Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-25060064009287040552017-08-02T03:46:00.002-04:002017-08-02T03:46:51.623-04:00The Great Diet Experiment Part Deux It's been a few years since I did the whole Paleo thing. It was great for me at the time. Over the course of the following two years I healed my stomach/guts to the point that I can now eat wheat again if it is non-GMO. Now, several years after that, between one thing and another, I eat WAY too many carbs. Back then I did a rough calorie count so I could figure out my macro balance (carbs vs protein vs fat). I estimated that I was eating around 1600-2000 kcals a day. I have no clue what I'm eating these days. I'm no longer cooking from scratch, eating a lot of take out, and eating a lot of prepared foods/snacks. Hence, the new diet experiment. I had been toying with the idea of trying out keto for years now and this is a good chance to see if I can do it.<br />
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I downloaded the app, cronometer. It tracks calories, macros and micro nutrients. Of course, rather than trying to do a baseline for a week I dove right in with calorie restriction. Big mistake number one. According to the app, with my height and weight and no exercise, my baseline is ~2300kcal per day. To lose a half pound a week I have to eat ~250kcal/day less than that. Oh easy beans right? I figure cut out my one soda per day and the two chocolate bars I eat a week and I'm golden. Sweet. Big mistake number two. <br />
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I started doing data entry on the foods I eat. I can watch in real time or even plan ahead and see how foods alter my calories, macros and micros. WOW!! Man do I eat a LOT of calories. I don't eat horribly. I eat pretty high quality foods but dang they are also calorie dense foods. Between meals and snacks I was probably around 3000kcal/day. Of course, doing the live tracking meant I immediately stopped eating normally. Because I could, I entered the day prior to the day I started tracking and ended up with 2500kcal/day based on just memory, which means I probably forgot stuff. <br />
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I immediately tried to stick to the allowed calories and immediately failed. I was starving!! Also I'm nervous about doing calorie restriction while having severe CFS/ME. I eat to make sure both my blood sugar and my energy stay at a pretty even keel. I also try to make sure I have a variety of foods and probiotics to help with my health. But I wasn't able to track any of this before and now I can.<br />
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After two days of trying to stick to the calorie count, I gave in. I was like screw it I'm eating the left over pizza in the fridge. I entered it into the food diary and to my surprise it didn't whack my numbers out by too much. Sure high in carbs according to the ratios I set up for myself but I was finding that there was no way to eat little enough carbs and enough fat to balance the macros out the way I wanted. So now I'm just kind of winging it and seeing what happens. <br />
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Some background... I've gained weight. Once I became sedentary and managed to start eating again I went up to 250lbs. I'm 5'2" which put me in the morbidly obese range. I had started at 220lbs which I was stuck at despite a good diet and tons of exercise. I was considered healthy obese; one of those quirks of nature that was healthy despite being horribly overweight. I had low blood pressure, okay cholesterol, no diabetes or even prediabetes. Then I got sick. I lost 20lbs right away due to not eating at all. Then gained back 50lbs over the course of several years and then leveled out. Then I went on steroids for a year. After that point, I very slowly crept up in weight until last year when I hit 305lbs. I had stomach problems last year so it fluctuated a bit and now a year later I'm at 306. Which is good. I'm not gaining. Whew! But it still sucks. <br />
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I had to buy furniture for our new house and now I have to check the construction to make sure it will hold my weight. Everything has to be wider, bigger and stronger for me to use it. I'm up to a 4X in clothing which means I'm stuck with one of the shittiest clothing manufacturers on the planet. I can no longer buy clothes in the stores. Hence my motivation for losing weight. My bed is uncomfortable; I need a new wider wheelchair; I've almost broken the wheels off my walker/seat; I'm worried about breaking the stairlift. It sucks!!<br />
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The whole thing is such an interesting experiment. I have always had body image problems. I've been fighting my body weight since I arrived here in the US in the 70s and suddenly packed on pounds. I hate diets and actively rebel against them every chance I get. We were so poor when I was a kid food scarcity was actually a problem and I was often hungry. Now as an adult I'm very wonky about how much food is in the house and if I have access to food. I used to carry food around with me for when I got hungry. <br />
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I keep trying to do the body positive thing but absolutely hate being fat. I had called a truce when I was able to exercise like crazy but now that I'm sedentary and cracked 300lbs I'm done. I want to fix this. I don't care that studies show that people gain the weight back. I don't care that I'm walking proof of those studies. I've been on two diets in my life. I lost weight and then gained it back with a few extra pounds. I keep hearing success stories in the Paleo world and was hoping that pounds would magically melt off me but alas that didn't happen. Again I'm the anomaly. <br />
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Back to the present day...<br />
This is now day five of my experiement. I've made a couple of decisions already. I'm not going to stress about sticking to the weight loss calorie count. If I can keep it at or slightly below the metabolic calorie count I'll be happy. It is still way less than what I was eating. The metabolic rate is a guess and probably wrong. If I've been eating between 2500-3000kcal/day and not gaining weight, then sticking to 2200-2500 is a good improvement. Even so I've been shifting what I eat. I'm figuring out what I can eat a lot of and what I have to be careful of. Yes this is getting into the good foods vs bad foods issue. I'm sort of ignoring that for now. I am leary of crossing over into eating disorder territory. I'm weighing my food, counting out tomatoes, pouring stuff into measuring cups,etc. It is dangerous territory. I almost slid into eating disorder territory the one and only other time I went on a serious diet back in the early 90s. While I need to control my eating and food, I really need to not get too hung up on it. It is going to be very difficult.<br />
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Other things I've noticed...<br />
I seem to be eating a lot of the time out of boredom. I want to get up and do something and getting a snack is about all I can handle. Also eating eases frustration, anxiety and stress. I love chewing on things when I'm anxious. I love fruit leather for this reason. It is nice and chewy. I can gnaw on it for a while. However, it is really high in calories so I have to watch the amount I eat. I think I have to find a different outlet for my frustration: breathing exercises maybe???<br />
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I've overeaten today. I'm stressing out about the blood test coming up in the afternoon. I have to do a 12 hour fast which means that by 4am I have to stop eating and won't have access to food until after 5pm tomorrow. Yikes!! I'm getting a little wonky over it. <br />
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I love ice water but it makes me hungry. Ravenously hungry. I also can't drink anything but water or I go way over my calorie count for the day. I manage to sneak in a little kefir but most of the time I'm skipping all the juices, kombuchas, etc that I used to consume almost daily. <br />
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Being able to see the micronutrient numbers on a daily basis lets me know which supplements to take. VitE seems to be a fairly common one. I'm surprised at how well I'm doing with most of them. I seem to be keeping up with the Bs, A, K and iron. Potassium I seem to be constantly short and E depends upon my meals for the day. Sometimes I hit it and sometimes I don't. I wonder if I can chart them out. That would be nice to see.<br />
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So jury is still out on this. I feel like I'm wrestling a bull by the horns and it is tossing me around a bit. I just ordered a scale that will work with my higher weight. I'm putting it in the remote bathroom so I won't be tempted to step on it every day. Another holdover from my weight obsessing days. I'm going to continue to try to eat a more balanced diet. I already knew I needed to eat more veg and less carbs. I'm going to have to mess around the macro settings though. Not sure I can handle the 50% fat/25% carb/25% protein I originally setup. I'm constantly missing these targets. It is nice seeing the micronutrient numbers though and it helps me with supplementation. There will be more about this. Particularly since I'm an emotional wreck around these issues. I really wish they would figure out why some bodies hold onto their weight while others lose so easily. Sigh. I just want to be under 200lbs. My goal is 140 but I'll settle for anything under 200lbs at this point. <br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-75244918311671109222017-07-26T05:15:00.000-04:002017-07-26T05:15:10.330-04:00To Sleep Perchance To DreamMy apologies to the bard....<br />
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Sleep is very VERY important. Even more so when you have CFS/ME. We sleep badly. We sleep badly for all sorts of reasons. I sorted out my sleep meds a long time ago. I take 25mg of trazadone (to stay asleep), magnesium taurate (to initiate sleep) and MSM (for pain) before bed. This past year I've been wrestling with my new CPAP machine and more recently the move to the new house where I had to throw out all my bedding and buy new. Hence the continued search for the perfect pillow.<br />
<br />
First CPAP<br />
When I first got sick, I was on a CPAP machine for the first time. My dental appliance wasn't cutting it for my snoring and fits of lack of breathing anymore. I'm from a long line of champion snorers and apparently my tongue is too big for my mouth. Between all of that and my weight voila! Sleep apnea! Well I hated that thing with a passion. Of course when my insurance got all out of whack due to switching from my company policy to Medicare I had to return the machine and I reverted back to my beloved dental appliance. By that point I had lost weight due to my illness so it sufficed for many years. <br />
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Well, I've gained back the weight I lost and added on quite a lot of extra pounds. No exercise makes me fat(ter). It all finally caught up with me last year and I ended up at the Brigham and Women's sleep lab. It was the only one where I could arrange for a sleep study during the day. No point in sending me to the local hospital lab. All they would end up doing is watching me watch TV all night. So after a huge nightmare ordeal with the doc's incompetent office staff, I ended up seeing the nicest sleep doc I've had yet. And I'm back on a CPAP machine. The new ones are better. They start at a low pressure and ramp up slowly until you keep breathing while asleep. There are way more mask options than 7 years ago and after the first one was a spectacular failure I got fitted with one that goes over both my mouth and nose. These don't bother me much because I've had to wear facemasks in the lab for work on and off for years. So I've settled in and made peace with the machine. I no longer wake up with headaches from oxygen deprivation or a spectacularly sore throat from snoring hard all night. I have to do have to play the radio to drown out the air flow and air pump or my breathing won't settle into a natural rhythm. This is okay most nights but if I'm flaring badly and can't stand noise sometimes I skip a night with it. I sleep so terrible that I actually look forward to using the machine the next night.<br /><br />I just had a vid chat with my doc today and I'm doing great on the machine. He lowered the pressure for me so it is much more comfortable to wear. I'm using it almost every single night for an average of 4.5hrs per night with my longest stint at 7hrs! I only stop breathing about once per night which is better than a normal person without true apnea! Woohoo! <br />
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I have done a couple of things to make the mask more comfy. I now use a fabric liner from Remzz's. I've also removed the rubber/silicon standoff that rests on my forehead and replaced it with a folded up tissue. I found the mask doesn't adjust down close enough to my face when the rubber standoff is present. <br />
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I did come down with shingles around my eye for about a month and had to switch to nasal pillows after sleeping for a week without the CPAP at all. I couldn't tolerate anything touching my face as it felt like a severe sunburn. I couldn't wear the pillows for more than two hours without the inside of my nose hurting severely. Nothing I did would stop this pain from happening so I just tolerated it until I got to switch back to my face mask. <br />
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Anyway, I'm happily back to using my regular mask. <br />
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The Bed<br />
Ah now this still hasn't been solved. We moved. I have a waterbed. It leaked at one point and I'm highly allergic to mold. I bought all new plastic bits including bladders, liner and cover. I also bought a new foam pad and the cotton cover that makes it look like a normal bed. Now this is a king size bed which means it is slightly longer than wide but you can't tell by looking at it. After we moved, hubs set up the base, then put the foam box on the bed, put the liner in, then the bladders. The bladders get filled with water, one for each side of the bed so we can adjust each side for our preference. Then the foam topper goes on for thermal isolation and finally the cover gets zipped into place. Well we get to the zipper part and the foam doesn't fit properly. It is my strong belief that hubs had put the foam box on the base the wrong way round. It was now too short by several inches and too wide by several inches. But he wasn't to be defeated and forced the foam and the zipper to work. So now the bed has high points at the head and foot of the bed. Problem #1<br />
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Oh I still have a slight case of MCS and can't tolerate odors. Particularly chemical odors. The bed now stinks. You know that smell of a cheap new shower curtain. Yeah, like that but from the bed I'm supposed to sleep in and I sleep face down. STINK! Oh so stinky! So I end up in the guest room on the brand new bed I bought for my kid because even though that is a brand new gel topped mattress it doesn't stink. And I had the forethought to purchase an adjustable base so I can put the head and feet exactly the way I want them. Problem #2<br />
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We don't own any curtains. The windows are a weird shape; very wide but short. The old shades don't go with the new paint scheme and hubs doesn't want to wrestle with the old hanging system. So both bedrooms have tons of light streaming into them during the day. And because of the positioning of the house it only gets worse as the day goes on. The guest room does still have the old slat blinds mounted in the window so I can reduce the amount of light in that room but it still isn't even close to being dark. Problem #3<br />
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The second floor of the new house has almost no air circulation. Even when I open the windows not much air flow happens. When it is sunny out the bedroom turns into an oven easily topping 80F even with the AC on. Turns out that the central AC system for the house is a single zone and underpowered for the size of the house. So while it might be a comfy 75 downstairs the masterbed is 85. I prefer sleeping in 65-70 range. Yeah I kept waking up in a pool of sweat hugely uncomfortable and generally pissed off. I would trudge down the hall to finish sleeping in the slightly cooler guest bedroom with a fan blasting at me. Problem#4<br />
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Back to the Bed Again<br />
Turns out the bladder is too full which means I end up with all sorts of body pain when trying to sleep on it. Even now that it doesn't' stink anymore I get woken up with limb, joint or back pain. I had to throw out all my old pillows. I had it setup just right before the move. The bed was really soft and my upper half was cushioned in pillows that didn't make me sweat. Taking water out of the bladder while a pain in a butt is fairly easily fixable. About a half hour's worth of work for hubs. <br />
<br />
But the pillow problem oy vey!! The amount of money I've spent on various pillows is in the hundreds of dollars at this point. My son now has three different pillows to choose from that I've rejected for one reason or another. I've bought organic wool, cotton, kapok and latex. Turns out I'm mildly allergic to kapok. Latex just plain old stinks and is very very hot. Wool and cotton pack down which makes them too hard for me to sleep on top of like I was doing in my old house. So I went to Walmart and bought some cheap ass pillows that didn't smell. Well, they turn out to be insanely hot. And the weird synthetic fabric covers on them catch on me when I try to move. This wakes me up as I end up in a wrestling match with the stupid pillows and I'm all sweaty too boot. They now reside inside my closet. They will be the ones that end up inside the decorative shams when I get that far with the bedroom; i.e. they'll get tossed on the floor every night. <br />
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I finally bought a bamboo covered temperpedic foam core 7" wedge for my torso. It is soft enough and very comfy to lie on top of but I'm back to the stink problem. It is outgassing. Each day it is less stinky but in the meantime I'm back to trying to sleep on my uncomfortable bed.<br />
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I also got a weird foam CPAP pillow that has scooped out corners so it doesn't jam into the mask. I still end up with dents on my face in the morning but it is much more supportive and comfortable than trying to faceplant in a regular pillow with a hard plastic mask on your face. <br />
<br />
In the End<br />
I'm still wrestling with sleeping in the masterbed. The bladder in the waterbed is still a tad too full so hubs is going to have to play with it some more. <br />
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I bought blackout curtains for the windows but the room feels weird and icky with them up. Not sure how to fix that. They were just cheapo curtains for a temporary fix. I couldn't keep sleeping with the sun streaming in the room. <br />
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I found that if I had the central AC fan run continuously the upstairs cooled off better than if I let it cycle via the thermostat downstairs. I bought a portable AC unit just for the materbed. Hubs is rigging it for the window casing so it isn't up and running yet but should be in the next few days. This is a temporary measure until we fix the central AC. We have to put a second unit in the attic for cooling the second floor so it will have its own zone. But that isn't going to happen for a few years yet. We have more pressing things to fix/spend money on. I also bought a fan just for the guest bed since that room is going to continue to be too hot. <br />
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The wedge pillow will work out once it finishes degassing and my CPAP pillow is fantastic. I still don't have a body pillow that I like and keep ending up with the smaller wool pillow tucked up against me. <br />
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Now the other weird ass problem I can't fix easily has to do with the orientation of the bed itself. Both of us have noticed this before in other places, hotels, our old house, etc. We sleep better/worse depending which way the bed is facing. It makes no sense to us but is a real phenomena. Well it turns out I don't sleep well in the masterbed in its present orientation. I sleep WAY better in the guest bed which is 90 degrees different from the masterbed. I've found that when I wake up at the midpoint in my sleep cycle if I climb back in bed across the bed instead of the correct way I sleep much more deeply. Because this is a water bed and because of the doors/windows/ AC vents it can't be moved easily. We are basically stuck with this orientation for the foreseeable future. So I guess I'm stuck sleeping across it rather than along it. The problem this creates is wearing the CPAP mask. I'm tethered to the machine and the way I like to lie in the bed will limit me to sleeping on my left side only when the mask is on. I have yet to find out how feasible this is since I'm currently only sleeping sideways after I take the mask off. <br />
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I still have my various weight blankets but need a sheet. I have some pajamas that still fit but a very limited assortment. I vary what I wear and which blankets I use based on the room temp. I need some more pjs of different weights. I want to sew them up myself but the sewing room is currently a storage room and hasn't been unpacked never mind setup. I guess I'm stuck buying from a catalog right now.<br />
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In Conclusion<br />
Things are coming along. I have pillows, curtains and my CPAP machine. The AC is in the works and the bed needs less water. The bed doesn't stink anymore. I need to buy more pjs and a sheet or two. Maybe I'll get a wool mattress cover and a wool body pillow but I need to save up for those as they are quite expensive. I think I'll end up with lighter colored curtains eventually with a blackout shade underneath. That way the room doesn't feel so gloomy. I still have work to do but after living here for five months I had had enough and decided to start fixing things even if they were temporary fixes. I need to be able to sleep well. While I like the guestroom more, my son is home more often right now since he lost his apt in NYC (that is another long story) so I need to setup the masterbed properly. I'm getting there. It has taken lots of trial and error and quite a bit of money. I'm not looking forward to my credit card bill next month but, hey, it is getting better. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-31018046056336751642017-07-25T02:46:00.000-04:002017-07-25T02:46:09.882-04:00Ten Perks From Being HouseboundI got the idea for this post from Toni Bernhard's piece in Psychology Today<br />
<blockquote class="tr_bq">
<a href="https://www.psychologytoday.com/blog/turning-straw-gold/201108/top-10-reasons-i-don-t-mind-being-housebound" target="_blank">Top Ten Reasons I Don't Mind Being Housebound</a></blockquote>
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I changed the title a bit because I DO mind being housebound and would love it if I weren't. Anyway, onto some light hearted fare....<br />
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<br />
<ol>
<li>Only loosely bound to a schedule. The only time I need to pay attention to a clock is for dinner prep or doctors appointments. Otherwise I can completely ignore it. I no longer need to wear a watch.</li>
<li>I can sleep whenever I want and don't have to stress over insomnia or an irregular sleeping schedule. When I first got sick I was constantly nodding off wherever I happened to be sitting so I started calling it free range sleeping. Now that I've been sick for six years I've settled into a more consistent sleeping pattern. Since I'm on disability and can't work, I don't have to force myself to sleep on a regular schedule. A few docs' have suggested I take sleep meds but I figure why? I don't need to be up in the morning so why stress over it. I go to bed when I'm tired no matter what time of day it happens to be and sleep for as long as I need to.</li>
<li>Binge watching entire TV shows. I think the longest binge was the original Stargate series. Nine seasons at 22-24 48min episodes per season. It took me over a month to get through it. I am a bit bummed that the current practice is down to 13 episodes at 41mins a piece. Now it only takes a couple of days to get through one season. Sigh....</li>
<li>I no longer have a boss to answer to. No more uncomfortable performance reviews where they tell me I'm doing a great job but they can't give me a pay raise because _____. No more office politics. No more misogynistic coworkers. </li>
<li>No more commute to/from work. OMG this one was getting horrendous by the time I got sick. A 15 mile drive that used to take me about 20mins was up to 45mins on a good day and 3+ hours on a bad day. </li>
<li>I can go outside into my yard almost whenever I want (I do have the occasional day where this is out of the question). Working in a government lab meant that around the winter solstice I literally never saw daylight. I went to work in the dark, worked in a lab without windows and drove home in the dark. Now I can open shades, open windows, or even walk onto my deck whenever I want. It might be freezing outside but I can stare at the trees whenever I want and breath fresh air whenever I want. During the warm weather I can sit outside for hours.</li>
<li>I get to have cats around me ALL. THE. TIME. Woohoo!</li>
<li>I get to drink lattes almost everyday. My son and I go out for coffee most days. We get to chat a bit and have great coffee together. We search out little coffee shops together. This was a tradition that me and my mom started decades ago. We used to go to Dunkin Donuts for a coffee and donut together once or twice a week. I'm so glad that I get to do it with my son now.</li>
<li>I can wear my pjs all day if I want to. Or I can wear the same clothes for multiple days in a row. And, I don't have to wear coordinated outfits. I can wear sweats or yoga pants or leggings or tee shirts. And I don't have to wear a bra!!!!</li>
<li>Lots and lots of pillows! This is the one perk that I share with Toni. I have a big pile of pillows on the couch and another pile in my bed. </li>
</ol>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-69687916687926560212017-07-24T01:56:00.000-04:002017-07-24T01:56:00.233-04:00General UpdateMy recovery from last year is going really slow. However, I'm coughing way less. We have a buyer for our old house but we haven't closed on it yet. Hubs keeps going over there every weekend so my cough hasn't gone away completely yet. The concept of his showering and changing clothes after being over there has never occurred to him. I'm lucky if he changes his shirt and that only happens if I bug him. Then he sleeps in our bed and contaminates the sheets and blankets. So I'm still coughing. Occasionally I have to use my asthma inhaler. But things are way better than before. A pack of cough drops can last me almost an entire week instead of one day. I'm using my inhaler about once a week instead of daily. I do have setbacks if I'm not careful when unpacking boxes. My son gets it so he showers, changes clothes or handles crap from the old house that hasn't been decon'ed yet. He can see the direct relation between his exposure and my coughing fits. Hubs just gets annoyed that I'm coughing rather than helping out. Sigh..... <br />
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I'm still pretty crashed. I'm sofa bound. I'm cooking very simple meals still. Luckily it's summer so we can grill a lot so all I have to make are sides or salads. On my good days I'm scrambling eggs and making coffee for breakfast in addition to the simple dinners. I'm getting out a bit when my son is around (he's currently flying back and forth between here and CO for his work). We go for coffee and late breakfast almost daily when he is here. I get to the supermarket once a week and have just started to go to the farmers market roughly twice a month. I'm not using enough fresh veg to go more than that. It is a waste of spoons. I'm still eating way too much take out but that has been improving. I actually feel better on days where we eat in. Even though I'm not making everything from scratch I'm buying mostly organic nonGMO foods and it makes a marked difference in how I feel. I'm considering hiring a prep cook to batch cook for me. My son has a friend that is interested. Haven't gotten around to arranging it of course but I'm hoping it will happen sooner than later.<br />
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After one bust, I managed to find a chiro I really like. (That is a story for another day.) I'm doing phone conferencing with my sleep doc and I FINALLY got it to work so I no longer have to travel to Jamaica Plain to his office. I've an apt with a potentially new internist. She works with Emerson Hospital and has a background in rheumatology so might be familiar with fibro. Here's hoping. My old doc, while not perfect, actually had some exposure to CFS/ME through a relative that ran a clinic for patients. I need some follow-up bloodwork from her: cholesterol, thyroid, vitD, and iron. Tell her/teach her about my illness and get the "lose weight" lecture. I still haven't managed to fill out all the paperwork yet. <br /><br />Presently I'm push/crash cycling so I have to work on that.<br />
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I've been trying to improve my sleep space. I was sleeping in the guest bedroom but my son has been visiting more and more since he no longer has a NYC apt. So far I've purchased blackout drapes for the master bedroom which work great! I bought a wedge pillow which is comfy but still smells weird so I've got it degassing. I think the waterbed still needs some water removed as it is too hard. I still have to find a solution for overheating with the mattress and pillows. Probably need another cotton or wool filled pillow and a cotton or wool filled mattress cover. Right now I wake up and I'm soaked in sweat. I found that if I sleep across the bed I do better than if I sleep normally in it. I also bought an AC unit for the masterbed but it isn't hooked up yet. Turns out the central AC unit is too small for the house and only cools the first floor adequately. The solution is to put a second unit in the attic to cool the second floor. The portable AC is a nice stop gap measure until we refurb the central AC in a year or two. Plus, typically I'm the only one that wants to sleep in a refrigerator. Sleeping during daylight hours means the bedroom I'm in heats up to oven temps which wakes me up and makes me miserable. Both guys sleep at night so the bedrooms aren't too bad for them. <br />
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Once I'm done with the masterbed, I'm going to fix the guest bedroom because damn that gel bed is AWESOME!!! Plus I bought the adjustable frame to go under it so I can raise the head and foot of the bed to get it just right for my aches and pains. All the room needs is some new blackout blinds. It is nice to have a second space to sleep in. I'm very comfortable there and sleep the best in that room. Hopefully I can upgrade the masterbed so I'm equally comfortable sleeping in that room also. It is a pain to drag my CPAP gear back and forth between the two bedrooms. Until my kid gets another apt somewhere he'll be here most weekends and some weeks so I get kicked out the room every four days or so.<br />
<br />
Other irons in the fire: I'm trying Dr Teitelbaum's protocol for increasing blood volume. I'm still experiencing dizzy spells even with my period problem solved. My biggest hinderance lately is dizziness on standing and getting out of breath really easily. I figure fixing my blood volume will help. So I ordered Vitalyte (formerly known as Gookinaid) and D-ribose powder. I already have CoQ10 and zinc. I like the electrolyte powder. I bought lemon. I add the D-ribose to it and have been drinking two glasses a day. I'm already seeing improved brain function. That is typically the precursor to improved physical function. I haven't started the CoQ10 yet. The protocol also calls for acetyl L carnitine but it is contraindicated in folks with thyroid issues so I'm skipping that part. I might introduce it at a very low dose after I get my thyroid tested by my new doc. That way I'll have a baseline and see how the supplement affects my thyroid.<br />
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I'm also trying to sunbathe more. I haven't been going outside due to the heat. I used to sunbathe late in the day after 4pm at my old house but my deck goes into shade pretty early due to all the trees so I can't sunbathe late in the day at my new place. I'm now trying to go out no matter what for 5-15mins around 3:30pm. It isn't long but it is better than nothing and I can tolerate the heat for that time frame particularly since I'm stepping back into the nice AC. I always take ice water outside with me. And I get almost naked so the sun exposure is all over and I get a good dose of sun in a short period of time.<br />
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That is about it. This post has gotten way longer than I intended. But I have plans. Lots of plans. I was getting a bit depressed but decided to take the bull by the horns and try to improve things for myself starting with better sleeping conditions. Then food, then sun, then supplements. Maybe new meds after I see my new doc. Hope has returned! Woot!<br />
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Things I want to do but haven't even thought about yet; get a new dentist, get a new therapist, hire a house cleaner, detox from mold.Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-6707505323244937374.post-27160380708389184882017-04-18T15:35:00.000-04:002017-04-18T15:35:08.663-04:00New Pain Drugs?<div style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin-bottom: 6px;">
Some interesting findings coming out of China regarding pain signalling. While these experiments were done in mice and rats, the human nervous system is similar enough that the scientists expect a similar system to be in operation in humans but needs to be proved. The upshot is that both GABA and ion channel gates seem to be involved in pain signal regulation in the peripheral nervous system: i.e. the intensity of pain is regulated locally in the body rather than in the brain. If this proves to be true, the authors claim that an entirely differe<span class="text_exposed_show" style="display: inline; font-family: inherit;">nt class of pain drugs could be developed that help relieve pain locally rather than using opiates and the like that affect the brain. I somewhat have my doubts about this last blanket statement since both GABA and ion channels exist in the brain as well as in the peripheral nervous system so a drug that affects one will probably affect the other unless they make it so that it can't cross the blood brain barrier. Anyhow, greater minds than mine are working on this and it is exciting for CRPS, fibro, CFS/ME and any other chronic pain patient.</span></div>
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"After spending five years studying ganglia cells taken from mice and rats in the lab, they found that they could actually exchange information with each other with the help of the signalling molecule GABA - an ability that was previously believed to be restricted to the central nervous system.</div>
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More than that, when the researchers stimulated pain signals in rats, they found evidence through this GABA pathway that the ganglia cells were communicating with each other, and regulating and changing the signal they sent on to the central nervous system."</div>
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<span style="color: #1d2129; font-family: Helvetica, Arial, sans-serif;"><span style="font-size: 14px;"><a href="http://www.sciencealert.com/scientists-discover-a-hidden-network-of-mini-brains-that-could-be-responsible-for-making-us-feel-pain">http://www.sciencealert.com/scientists-discover-a-hidden-network-of-mini-brains-that-could-be-responsible-for-making-us-feel-pain</a></span></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-63156443416831988622017-04-17T23:30:00.001-04:002017-04-17T23:30:18.390-04:00A Long Hard YearIt has been a crazy year both on a health front and personal front. At the beginning of 2016, I started with a new CFS/ME doc which triggered a cascade of new doc apts. However, these were all in Boston or south of Boston in Jamaica Plain which all meant pretty bad crashes both from the car trips and the lengthy appointments. I had a running tally of all the apts and hospital visits and it was quite ridiculous. Undoubtedly in random order: CFS/ME doc at MGH, the head of neurology at MGH (this was a Dr House style visit with him and his staff), sleep study, multiple sleep doc visits, pulmonary doc and cardiologist. This was on top of my regular doc, chiro and shrink visits. I ended up in the ER several times due to a kidney infection and almost dying from the morphine they gave me in the ER and a recurrent UTI that they were scared would end up in another kidney infection. Then of course when I managed to get through all of that I went in twice for procedures that I had been putting off due to all the other doc visits. So I went under anesthesia for the first time since having CFS/ME. The doctors and anesthetists were great. They read the literature I brought and dosed me properly and I had very little side effects from the surgeries. I think I crashed more from the stress of it than the actual procedure. Lets just say the near death experience didn't help allay my fears about going under anesthesia for the first time since having severe neuro symptoms from my illness. Anyway, this has all wound down for now. I came out the other end of all of this with a diagnosis of severe sleep apnea which resulted in a CPAP machine and a diagnosis of an enlarged uterus which the doc wants to take out. I'm still on the fence about that one.<br />
<br />
On a personal front we were house shopping and fixing up our current house while all this medical crap was going on. Last spring we decided that the kitchen had to be gutted completely and a new kitchen put in for us to sell our house at the price it should go for in this market. So hubs proceeds to demolish stuff. Dust everywhere and then the bad thing happened. He opened the wall up when I was sitting on the couch next to the kitchen. Black mold filled an entire bay. Turns out the roof had been leaking probably for one to two years but the leak was inside the wall. It was damp inside and covered in mold. I immediately started coughing hard. A year later and I still have a bad cough. The pulmonologist who isn't mold savvy tried me on three different inhalers before we found one that didn't send my neuro symptoms into a tailspin. It didn't help. All I could do was eat cough drops all day. And of course my CFS/ME got WAY worse. I also gained weight due to both increased inactivity and eating take out almost everyday. I was off my normal semi-healthy diet. I got worse. Instead of the 2-3 months we were quoted it was closer to six months for everything to be complete. Everything trigger coughing fits: dust, walking, breathing. Hubs stopped the cleaning lady from coming over during construction so the place got outrageously filthy. The dust was staggering. The house was open concept so even with the plastic sheets up (which the cats ripped doors into so they could access the kitchen) the dust, noise, and fumes were a daily problem. Then there were the times I had to chase the cats down in the backyard when the construction guys accidentally let them out. I got worse. On the weekends we were going to open houses which meant I was often climbing stairs to see the other floors if we were going to bid on the house. This also meant more car trips. I got worse. We kept being outbid so we had to keep shopping. It took us three years of shopping but we finally closed on a new house in November. Now the packing started. <br />
<br />
But the mold contamination was a problem and hubs wanted to ignore the whole contamination thing. I did manage to talk him out of bringing the upholstered furniture to the new place. We threw tons of stuff away but this was a large house with 16 years of stuff accumulated and I couldn't help. Ideally everything should be washed and encased in plastic before moving. HA! Like that was going to happen. The stuff that would take forever to decontaminate should go into the basement while the easily cleaned stuff go into the living space. Again HA! Hubs really doesn't take this seriously. I'm being paranoid. Imagining it. However, every time I went to the new house, even though it also had construction dust I didn't have the nasty coughing fits I would at the regular house. Hubs put together a huge list of repairs that needed to happen before he would let us move to the new place due to dust and smells. It was torture knowing that I had a pristine place to move into but I had to wait. My mom came to visit and she helped me clean and pack the kitchen up. I also managed some of my clothes. I labeled the boxes "washed" and "needs washing" since our washer decided to kick the bucket and put a halt to all laundry proceedings. I couldn't get out to the cleaners to get stuff washed so I gave up. Just pack it and I'll deal with it at the other end. Not ideal but there was nothing I could do. I was tired. Oh so very very tired. I often had days with the shakes or days I could NOT get out of bed. My muscles literally wouldn't work and I couldn't get up. <br />
<br />
Good news is: I'm moved. I'm coughing less. I'm improving. Still eating way too much take out and processed foods. I've had to use instant meal stuff like premade meatballs or trays of mannicotti or boxed pulled pork. Not ideal but a tad better than takeout. The deck on the new house has full sun in the afternoon so I literally step out the backdoor and can sunbathe. I don't need to be able to get up or down steps, walk over to a sunny patch, haul a chair around. I just walk two steps out and sit down. I'm also facing the woods so naked sunbathing is an option. I've done it once so far. Topless has been happening regularly though. My old yard I could only go topless in certain spots where I was hidden from the neighbors and even then I had to be lying on the ground. Much easier here. My new furniture isn't bothering me from a chemical standpoint which is a minor miracle. The new couch is wicked comfy and I ended up sleeping on it until the water bed made it here. A stair lift was installed so I have complete access to the second floor and the master bed & bath. I have a walk in shower with a handheld head which makes showering so much easier than it used to be. While the tub is difficult to climb into and out of with the help of hubs it isn't impossible. I had my first bath the other week and OMG it is awesome! It is a soaking tub with jets. I didn't turn the jets on but to be in a large tub with lots of water was divine! My old tub was tiny because the bathroom was tiny. As I got bigger I no longer fit well in the old tub. Now I've got tons of room!<br />
<br />
Life is getting better. I'm slowly improving. I managed to cook an entire dinner today mostly by myself. That is the first time in many many many months. I'm slowly getting my diet back on track. Slowly taking my supplements again. I've noticed I can read for longer and read more complex material. I seem to be able to write again. Not very organized but still I'm writing again! It has been a tough year. I love my new house though. I still have to go through the exercise of finding new docs near me. I've lucked out and found one that treats mold illness that is the next town over. Haven't gone yet since I have to do extensive tests prior to my first visit. Hubs is still playing with the old house prepping it for sale. My kid moved to NYC so transportation is a problem. Plus I just want to settle down first. I want a couple of weeks without apts or places to be. I want to eat better food for a while. I want to improve a bit more before starting another doc apt barrage. <br />
<br />
So that is where I've been for the last year. In and out of hospitals, doc apts, renovations, moving, etc etc. Things are settling down and I'm enjoying things again. I have so many plans. I hope I continue to improve. I would like to be able to cook again. I also want to start sewing my own clothes. There is shite available when you get over size 28. It sucks. I have plans. Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6707505323244937374.post-76993971421570120542016-02-19T16:18:00.000-05:002016-02-19T16:18:08.403-05:00Treatments with Unobtainium<blockquote class="tr_bq">
<span style="background-color: white;">"</span><span style="background-color: white; color: #222222; font-family: arial, sans-serif-light, sans-serif; font-size: x-small;">Unobtainium is a highly desirable material that is hypothetical, scientifically impossible, extremely rare, costly, or fictional, or has some of these properties in combination." --Google</span></blockquote>
<div>
<br /></div>
On the occasions that I can read, I read a lot of science paper abstracts and journal articles. I learn about all sorts of potential cures that sound fantastic on paper. However, I see very little if any movement towards these cures actually being developed or if they are developed they aren't available in the US. It makes one wonder if the BigPharma has a stranglehold on the market and doesn't want us to have cures that don't involve popping pills. Hum.....<div>
<br /></div>
<div>
Conspiracy theories aside, here are three unobtainium treatments:</div>
<div>
<br /></div>
<div>
1) Phage treatment for gut infections</div>
<blockquote class="tr_bq">
This involves the use of a virus that is bred to take out specific strains of bacteria, C. diff for instance, while leaving the regular gut bacteria untouched. This is a huge benefit since the health of our microbiome is tantamount to our overall health. Since there is a possibility I might have Whipple's, which is a weird rare bacterial infection of the gut, I would greatly benefit from phage treatment if I tested positive. The current treatment for Whipple's is IV antibiotics for several weeks followed by 1-2 years of treatment with doxycycline. I can't imagine the damage to the microbiome from this treatment regimen. UGH.</blockquote>
<blockquote class="tr_bq">
<a href="http://www.the-scientist.com/?articles.view/articleNo/44906/title/Clearing-Gut-Infections/" target="_blank">Clearing Gut Infections by Jyoti Madhusoodanan </a> The Scientist Jan 1, 2016</blockquote>
<br />
<br />
2) Vagus Nerve Stimulation<br />
<blockquote class="tr_bq">
I've been reading about this one for a while. I've long suspected vagus nerve involvement with CFS/ME possibly even a viral infection migrated into the nerve itself causing inflammation. Anyway, there have been great results in fibro patients with vagus nerve stimulation with many patients going into complete remission. Although there are subcutaneous stimulators that are implanted like a pacemaker via surgery and also noninvasive stimulators that clip to the ear lobes, neither one is available in the US. The subcutaneous ones are in the US but only for seizure disorders and of course the easy peasy noninvasive clip ons are only available in Europe. Geesh! Proven tech that isn't allowed in the US. If I could travel I would take a medical trip to the UK to get my hands on one of these puppies. WTF!?!!? So much for the US being the center for medical excellence. </blockquote>
<blockquote class="tr_bq">
<a href="http://www.cortjohnson.org/blog/2016/01/11/vagus-nerve-stimulation-fibromyalgia-chronic-fatigue-syndrome-mecfs/" target="_blank">Vagus Nerve Stimulation, Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) by Cort Johnson</a> Health Rising Jan 11, 2016 </blockquote>
3) Hyperbaric Oxygen Treatment<br />
<blockquote class="tr_bq">
Again proven not only to relieve pain in fibro patients but also to reverse brain damage caused by the illness. Most doctors will NOT prescribe this treatment. You would think that with the CDC taking away our opioid meds they would allow this safe effective pain treatment to become standard but no. </blockquote>
<blockquote class="tr_bq">
<a href="http://news.rice.edu/2015/06/02/hyperbaric-hope-for-fibromyalgia-sufferers-2/" target="_blank">Hyperbaric Hope for Fibromyalgia Sufferers by Mike Williams</a> Rice University Jun 2, 2015 </blockquote>
<blockquote class="tr_bq">
<a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0127012" target="_blank">Hyperbaric Oxygen Therapy Can Diminish Fibromyalgia Syndrome - Prospective Clinical Trial by Shai Efrati et al</a> PLOS One May 26, 2015 </blockquote>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-37034174759507022482016-02-16T03:01:00.000-05:002016-02-16T03:01:59.406-05:00ProcrastinationWhy oh why do I HATE showering so much? I used to like showers but not since I got sick.<br />
<br />
Is it because:<br />
<br />
<ul>
<li>it wipes me out just to prep for a shower; gathering towels, setting up the shower chair, fetching shampoo or soap, disrobing, combing out my hair, etc</li>
<li>i hate showering in a shower chair; spots get missed</li>
<li>it uses up tons of spoons to get clean; all that scrubbing and hair washing</li>
<li>i now have to shampoo my hair several times to get all the oil out of it</li>
<li>i have to use all sort of concoctions to get rid of the armpit stink</li>
<li>i almost alway run out of hot water before I'm finished</li>
<li>i can't reach everywhere that needs soap</li>
<li>the cat is slowly ripping apart my scrubbie and I keep forgetting to buy a new one</li>
<li>i can never dry myself off very well because I'm sitting on the edge of the tub while toweling off</li>
<li>combing my hair out makes my arms ache</li>
<li>my hair takes forever to dry</li>
<li>i only smell/look good for about 24 hours but can only shower once or twice a week i.e. it is an enormous exercise in futility</li>
<li>i don't want to undress in the cold</li>
</ul>
<div>
That about covers it. And yes I really should be in the shower right now instead of writing about how much I don't want to shower.</div>
<div>
<br /></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6707505323244937374.post-1315168589010807162016-01-28T04:45:00.000-05:002016-01-28T04:45:05.558-05:00CFS/ME vs Mitochondrial Dysfunction This paper is a totally different take on mitochondria's role in CFS/ME than the standard idea brought forth by Dr. Myhill (mito ATP is broken and needs repair). Of note, Dr Myhill is a general practitioner who treats patients in a regular clinical setting and is not a researcher per say. This paper was done by genetics researchers using patient data from a central database. Okay with that caveat let's proceed...<br />
<br />
If. IF! I am reading this paper correctly, then the authors looked at three things in the mitochondria (mito) of PWME/CFS and age/sex matched controls: the haplogroups, SNPs and heteroplasmy. Think of haplogroups as the ancestral lines of the mito DNA. If you come from the UK you will have slightly different mito DNA than someone that comes from Asia. These lines can be traced back for thousands of years over hundreds of generations. As an aside, the lineage of humans was traced back through maternal mito DNA. <br />
<br />
SNPs are single nucleotide polymorphisms which are single locations on a gene. Each location can have one of two proteins that encodes the genetic information for accurate cell reproduction or genetic recipe if you will. A single SNP error can potentially lead to illness or disease but not always as the body often has work arounds and redundant systems in place to ensure survival despite coding errors. A single disease often has clusters of SNP associated with it rather than a single SNP. <br />
<br />
Heteroplasmy is the case where a single cell has mitochondria with different types of DNA. Sometimes this diversity is good and can lead to long life and other times it can lead to disease. I know too little about this in general to add to this. Right now this is just paraphrased from the wiki entry on heteroplasmy. <br />
<br />
So, this study looked at the ancestry of the mito DNA, the single genetic errors in the mito DNA and the number of different types of mito DNA in patients. And some very interesting data popped out:<br />
<br />
<ul>
<li>when all the variables are adjusted for there are no specific SNPs associated with CFS/ME</li>
<li>there were no significant differences in the heteroplasmy of CFS/ME patients and healthy controls</li>
<li>This is the interesting bit: while there were no significant differences between CFS/ME patients and healthy controls with regard to haplotype, each haplotype is predictive of the subclass of CFS/ME patients. In other words, while a single or combination of haplotypes could not predict illness necessarily happening it could predict the symptoms once illness is present. So one haplotype would have more neuro symptoms, while another would have more gastric symptoms while a third would have more energy production problems. Wicked cool!!</li>
</ul>
<div>
The significance of these results is that...</div>
<blockquote class="tr_bq">
<span style="background-color: #cfe2f3; font-family: inherit;"> "<span style="line-height: 17.6px;">The variation in symptom constellation that occurs in ME/CFS could be due to genetic variation in individuals, rather than differences in underlying cause of the disease."</span></span></blockquote>
<br />
which is VERY important to understand. While there seems to be no difference in mitochondrial DNA between the sick folk and controls, the mito DNA haplotypes do affect how the illness presents itself.<br />
<br />
Of course this research needs to be duplicated to be confirmed but it is super cool none the less. <br />
<br />
Here is the link to the very technical paper:<br />
<h1 style="border: none; clear: both; line-height: 1.4em; margin: 0px; outline: 0px; padding: 2px 0px 0px; vertical-align: baseline;">
<span style="font-family: inherit; font-size: small;"><span style="font-weight: normal;"><a href="http://www.translational-medicine.com/content/14/1/19" style="background-color: #cfe2f3;" target="_blank">Mitochondrial DNA variants correlate with symptoms in myalgic encephalomyelitis/chronic fatigue syndrome</a> </span><a href="http://www.translational-medicine.com/content/14/1/19" style="background-color: #cfe2f3; font-style: inherit; line-height: 1.5em;" target="_blank"><span style="border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Paul Billing-Ross</span><sup style="margin: 0px; padding: 0px 0.2em 0px 0px;"><span style="border-color: initial; border-style: initial; font-style: inherit;">1</span></sup><sup style="margin: 0px; padding: 0px 0.2em 0px 0px;">†</sup>, <span style="border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Arnaud Germain</span><sup style="margin: 0px; padding: 0px 0.2em 0px 0px;"><span style="border-color: initial; border-style: initial; font-style: inherit;">2</span></sup><sup style="margin: 0px; padding: 0px 0.2em 0px 0px;">†</sup>, <span style="border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Kaixiong Ye</span><sup style="margin: 0px; padding: 0px 0.2em 0px 0px;"><span style="border-color: initial; border-style: initial; font-style: inherit;">3</span></sup>, <span style="border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Alon Keinan</span><sup style="margin: 0px; padding: 0px 0.2em 0px 0px;"><span style="border-color: initial; border-style: initial; font-style: inherit;">3</span></sup>, <span style="border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Zhenglong Gu</span><sup style="margin: 0px; padding: 0px 0.2em 0px 0px;"><span style="border-color: initial; border-style: initial; font-style: inherit;">1</span></sup> and<span style="border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Maureen R. Hanson</span><sup style="margin: 0px; padding: 0px 0.2em 0px 0px;"><span style="border-color: initial; border-style: initial; font-style: inherit;">2</span></sup><sup style="margin: 0px; padding: 0px 0.2em 0px 0px;">*</sup></a></span></h1>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-88297086525322468282016-01-27T02:18:00.000-05:002016-01-27T02:18:09.643-05:00AMPK Triggers Mitochondrial RepairThis very interesting paper just came out of the Salk Institute. It is a tad technical but it might be key to CFS/ME treatments in the future. <br />
<br />
Mitochondria are the little power plants for ALL of our cells. Every single cell in our body has mito in it. It is fairly well accepted that mitochondria don't work properly in PWME but the mechanism by which it is broken isn't well understood.. See <b><u><a href="http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure" target="_blank">Dr. Myhill's page</a></u></b> for more info on mitochondria and CFS/ME.<br />
<br />
The paper that just came out from Salk shows the mechanism responsible for the dismemberment of damaged mito and its regrowth. <br />
<blockquote class="tr_bq">
<span style="background-color: #cfe2f3;">"<span style="color: #484848; font-family: Roboto; line-height: 27px;">Earlier research has shown that AMPK helps to recycle damaged mitochondrial pieces, and signals to the cell when to make new mitochondria." (1)</span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: #cfe2f3;">"<span style="color: #484848; font-family: Roboto; line-height: 27px;">When mitochondria are subjected to damage in the form of environmental stress, toxins, or genetic mutations, [which in turn causes AMPK to trigger] the cell [to] take the mitochondria apart, remove the damaged pieces, and re-assemble the mitochondria." (1)</span></span></blockquote>
<blockquote class="tr_bq">
<span style="background-color: #cfe2f3;">"<span style="color: #484848; font-family: Roboto; line-height: 27px;">AMPK, which can be seen as a cellular fuel indicator, is activated by the diabetes drug metformin. Exercise and a restricted diet are also known to activate the enzyme, indicating that these therapies work, at least in part, by promoting mitochondrial health." (1)</span></span></blockquote>
This makes me wonder about the effects of prolonged fasting on PWME. It looks like <a href="https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/" target="_blank"><b>fasting not only would knock out B cells</b></a> but also induce the production of fresh mitochondria. Both of which could potentially be very good for PWME. Now if I could only muster up the willpower to do a three day fast. My blood sugar goes really wonky when I don't eat properly. <br />
<br />
Oooh almost forgot the links to the papers:<br />
<br />
<ol>
<li><a href="http://mitochondrialdiseasenews.com/2016/01/20/ampk-induces-rapid-fragmentation-of-mitochondria-exposed-to-damage/" target="_blank">Mitochondrial Repair Mechanisms Seen in Study, Offering Insights into Diseases by Magdalena Kegel</a></li>
<li><a href="http://science.sciencemag.org/content/351/6270/275" target="_blank">AMP-activated Protein Kinase Mediates Mitochondrial Fission in Response to Energy Stress by Erin Quan Toyama et al </a></li>
</ol>
<div>
One thing I do want to look into are the SNPs that control MFF which might be part of my Genetic Genie report. Not sure. Will have to get back to you on that one if I remember. </div>
<br />
<br />
<br />
<br />
<div>
<span style="background-color: white; color: #484848; font-family: Roboto; font-size: 18px; line-height: 27px;"><br /></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-28521687769495473602016-01-26T11:36:00.000-05:002016-01-26T12:09:44.090-05:00Immune System RebootThere is a new treatment for MS that was developed in the UK where patients go for the standard chemo rounds to knock out the immune system and then are implanted with stem cells to regenerate it. The new cells aren't damaged so the body stops attacking itself and the myelin sheath around the nerves regenerates giving the patients their health and functionality back.<br />
<br />
<blockquote class="tr_bq">
<a href="http://www.bbc.com/news/health-35065905" target="_blank">Cancer Treatment for MS Patients Gives "Remarkable" Results by Fergus Walsh BBC News </a></blockquote>
<br />
There has been some speculation in the CFS/ME world wondering if this would work for us as well. Trouble is we don't know if this is an autoimmune illness or just an illness that hijacks the immune system; i.e. is the body under attack from the immune system or is it just overactive and then underactive? This is a critical difference. There is some evidence that it is indeed an autoimmune condition in at least some patients as seen in the Rituximab trials. Rituximab, another cancer drug, knocks out the b cells and works in some but not all CFS/ME patients. If there is any lingering viruses in our bodies then once the immune system is knocked out the virus reactivates and a raging infection occurs so there are significant risks to CFS/ME patients particularly those that had a viral onset. <br />
<br />
<blockquote class="tr_bq">
<a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898" target="_blank">B Lymphocyte Depletion in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open Phase II Study with Rituximab Maintenance Treatment by Oysten Fluge et al </a></blockquote>
<blockquote class="tr_bq">
<a href="https://www.newscientist.com/article/dn27813-antibody-wipeout-found-to-relieve-chronic-fatigue-syndrome/" target="_blank">Antibody Wipeout Found to Relieve Chronic Fatigue Syndrome by New Scientist </a></blockquote>
<br />
The million dollar question is 'Is CFS/ME an autoimmune condition?'.<br />
<br />
Talking of rebooting the immune system, turns out it can also be done without the drugs. Prolonged fasting causes the body to 'eat' the white cells (b cells) which forces the body to replace them with new ones essentially rebooting the immune system. I don't know if anyone in the CFS/ME community has done cyclic prolonged fasting. Myself I get loopy very very quickly if I don't eat regularly. Also I don't know if this works on women as well as men since they tend to react to fasting differently than men. Anyway, here is the article on prolonged fasting and the immune system...<br />
<blockquote class="tr_bq">
<a href="https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/" target="_blank">Fasting Triggers Stem Cell Regeneration of Damaged, Old Immune System by Suzanne Wu University of Southern California</a></blockquote>
<br />
I am SO tempted to try a multiday fast but I'm very scared of ending up bedbound. If you want to give it a go drink LOTS of fluid. LOTS. Otherwise you get dehydrated and end up in hospital with other problems. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-65799842703530917612016-01-22T02:01:00.000-05:002016-01-22T02:01:00.012-05:00The Detoxification of Women's BodiesDetoxing is all the rage. However, its definition is a tad fuzzy and there are tons of unscrupulous folk willing to scam you out of your money over it. My first clue regarding the definition was when I told my CFS doc that I was having detox problems with my glutathione IVs. He asked me what exactly I meant by that and I had to go into a lengthy explanation of what was happening to my body. This should have cued me into the ramifications of detoxification language but I was messed up enough at the time to only get slightly aggravated with my doc for being so dense. Lately, however, I've noticed something that I find disturbing. I don't know if this is new since I'm relatively new in the chronic illness sphere. It might have been around for years or decades. Also, this is fairly difficult for me to describe since the evidence for my disquietude is subtle. So let me start with language. <br />
<br />
Language is a powerful thing and the way we use language can give us insight into how the mind is functioning both in a neurophysical sense and a psychological sense. An example of a neurophysical glitch would be word loss/substitution. Calling your pets your furbabies might be an indication that you are substituting your pets for actual children on a psychological level. What is disturbing me is the way women tend to discuss detoxification. <br />
<br />
Our bodies do indeed have many real detoxification pathways that can break. The methylation (MTHFR) pathway broke in me and I got very sick as a result. I needed glutathione IVs, activated charcoal, bentonite clay and B12 to get thing working again. There are also liver pathways (CY9 SNPs), the lymphatic system and probably a few others I don't know anything about yet. Our bodies can also break in another way; for example leaky gut, where toxins that normally wouldn't be allowed in, sneak in through gaps between the cells lining the gut. So there are ways that we can break that allow stuff in (leaky gut or leaky brain barrier or even broken skin) and ways that we can break where we can't adequately eliminate toxins from our system (MTHFR, CY9 defects or even not being able to poop regularly). These are biochemical and physical glitches in our system. They can be tested for and for the most part fixed or worked around given the right supplements and/or meds and/or diet. <br />
We can also reduce the toxic burden on our bodies by eating clean, removing toxins from our environment, using air and water filters, etc. The idea is that the fewer toxins we are exposed to then the less the body has to work to eliminate because the toxins were never ingested/absorbed in the first place.<br />
<br />
Now here is where it starts to get weird. When I first started the B12 and folate protocol for MTHFR I started bleeding heavily for weeks on end. It took me a while to figure out that it coincided with the vitamins. When I asked about it I was told by several women "Oh that is just the body detoxing. Don't worry about it.". I accepted this explanation and tried to continue with the protocol. This lead to anemia from the excessive blood loss. I even ended up in the ER at one point with a UT probe up my hoohoo (very uncomfortable BTW) with no evidence that there was anything causing the bleeding. Taking high doses of fish oil leads to the same thing for me. I was put on high doses of progesterone to halt the bleeding and there was even talk about cauterization of my uterus to prevent it from happening again. Not a route I wanted to go so I stopped taking fish oil, B12 and folate which stopped the bleeding. But this idea that my uterus was detoxing started niggling at me. <br />
<br />
Other women were experiencing the same side effects as me but I have yet to find a scientific explanation for it. The male docs I talked to had never heard of it and the women assumed that their bodies were toxic/dirty and trying to self correct through a detox process that doesn't exist. While you do indeed detox via breath, sweat, pee and poop, I've never EVER heard of detoxing through the uterus. I certainly didn't bleed heavily while I was on glutathione IVs even though the detoxification was so drastic that I had to take charcoal or clay after a treatment to reduce the herxing. <br />
<br />
Now you have to realize that <a href="http://www.womenpriests.org/traditio/unclean.asp" target="_blank">women have been told for centuries that bleeding is dirty</a>. Our lady parts are dirty. They must be cleaned, deodorized and sanitized. Companies make a fortune convincing us to use tampons, pads, deodorants, soaps, shampoos and, more recently, shaving all our hair off. So the idea that our uterus must be detoxed isn't a stretch. In fact I just found this article: <br />
<br />
<blockquote class="tr_bq">
<a href="http://www.iflscience.com/health-and-medicine/doctors-have-strongly-warned-against-putting-herb-balls-detox-their-wombs" target="_blank">Doctors Warn Against Using Herbal Tampons To "Detox the Womb"</a></blockquote>
<br />
which describes little herbal sachets that go into your vagina to cleanse it. <br />
<br />
I've noticed in some of the patient pages that women often go for the detoxing first. They assume that their bodies are contaminated and dirty and need cleaning. This is even before they get tested for ANYTHING, genetics, vitamin deficiency, glutathione levels, ANYTHING. I never seen the guys do this. True these spaces are mostly populated by female patients so my sampling is severely skewed, BUT given the history of "dirty women's bodies that must be cleansed" it isn't much of a stretch that women are now assuming that they must be detoxed with little to no evidence. You see it in the huge sales of juice fasts, sugar detox diets, Whole30 resets, etc. It is just assumed that our bodies are contaminated and must be fixed.<br />
<br />
I'm still trying to work through these ideas. There is some line that needs to be drawn between actual physical problems when the body breaks and this idea that we are necessarily dirty and must be cleansed at all costs. If our bodies work properly, then they detox themselves just fine. There are rumors about yoga gurus that can drink poison without any ill effects because they have trained their body to detox itself very efficiently, but I digress... I guess I'm trying to get away from the idea that women are necessarily dirty, that our natural state is unclean or that because we are sick we must be toxic. I keep seeing in the patient forums the language women use to describe detoxing in relation to their bodies and it often reminds me of the "women are dirty and must be cleansed" line of thought. While we might break, we are most often fixable but we are not <i>necessarily </i>dirty. It is very hard to find examples of the language I'm referring to since it is very subtle. For me, it has been a cumulative thing rather than one big glaring example. Never the less it still worries me. We need to hold ourselves in higher esteem. Get tested first. Don't assume that you are dirty/contaminated. Find out what is broken and fix that rather than going on random and possibly dangerous detoxification protocols that might not have any science behind them at all. Our bodies are miraculous objects that can handle toxins when working properly. And, no, you do NOT detox through uterine bleeding. That is just plain nonsense akin to bloodletting with leeches. If you are bleeding, stop the protocol before you get anemia. <br />
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However, I still have no idea why B12, folate and fish oil cause heavy bleeding. In that regard, the medical mystery continues. In the meantime, I do want to be more mindful about how I discuss and think about detoxification. Language matters and my uterus does NOT need detoxifying, thank you very much.<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-67532900600170211282016-01-11T16:45:00.000-05:002016-01-11T16:45:14.082-05:00Gait and CFS/MEOne of the hallmarks of this illness is the fact that we can NOT multitask. One of Dr. Bell's tests was asking his patients random questions while clicking a pen. That pen clicking was just enough to distract the patient and make them unable to answer questions. It was one of his low tech tests for CFS/ME as no other patients would be affected by pen clicking as severely as PWME. So from his unscientific country doctor test we go to the scientific study that show this to be true:<br />
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<blockquote class="tr_bq" style="background-color: white; border: 0px; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-weight: 400; line-height: 1.35em; margin: 0px 0px 10px; padding: 0px;">
<span style="font-size: small;"><a href="http://www.rehab.research.va.gov/jour/2015/527/jrrd-2014-11-0293.html" target="_blank">Reduced gait automaticity in female patients with chronic fatigue syndrome: Case-control study</a></span></blockquote>
<span style="background-color: white; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em;">Jan b Eyskens, MSc PT, DO, Pr Ph;</span><span style="background-color: white; border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em; margin: 0px; padding: 0px; vertical-align: super;">1*</span><span style="background-color: white; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em;"> </span><span style="background-color: white; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em;">Jo Nijs, PhD;</span><span style="background-color: white; border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em; margin: 0px; padding: 0px; vertical-align: super;">2</span><span style="background-color: white; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em;"> </span><span style="background-color: white; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em;">Kristien Wouters;</span><span style="background-color: white; border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em; margin: 0px; padding: 0px; vertical-align: super;">3</span><span style="background-color: white; border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em; margin: 0px; padding: 0px; vertical-align: super;">–</span><span style="background-color: white; border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em; margin: 0px; padding: 0px; vertical-align: super;">4</span><span style="background-color: white; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em;"> </span><span style="background-color: white; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em;">Greta Moorkens, MD, PhD</span><span style="background-color: white; border-image-outset: initial; border-image-repeat: initial; border-image-slice: initial; border-image-source: initial; border-image-width: initial; border: 0px; color: #003f72; font-family: Georgia, 'Times New Roman', Times, serif; font-size: x-small; line-height: 1.35em; margin: 0px; padding: 0px; vertical-align: super;">1,4</span><br />
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That paper basically says that when you distract a PWME while they are walking they stop walking as they can't walk and pay attention to something else at the same time. Personally I've known this since my illness started. On my severe days where I have trouble walking at all, the least little thing distracts me and I freeze in place until I can refocus on walking again. It is like the pen clicking test. The least little distraction causes me to stop walking and stand like a statue. My brain can't handle processing that much information at the same time. Walking is one of the more difficult tasks we do as humans which means that it takes a lot of brain power to perform the act of walking. PWME just don't have the processing capability to walk, talk and chew gum at the same time.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6707505323244937374.post-70328041221636885042016-01-11T03:53:00.001-05:002016-01-11T03:53:54.389-05:00To the ER and Back AgainPart of the reason I've been missing from here is the last health <strike>scare</strike> escapade. For about a year now I've been having some nasty nasty chest pain (and yes I should have gone to the hospital the first time it happened and yes the EMTs and nurses all chewed me out for not doing so). Anywho, when I'm fast asleep I'll get woken up by a horrible stabbing pain in my back on the left side just above the bottom of my rib cage. After the initial shooting pain it tends to settle into a tight band around my chest at the level my bra strap usually circumnavigates my chest. Not a way that I like getting woken up. I can't lie down. I have to sit up until it passes which usually happens after a few minutes of excruciating pain. Each time it has happened I've wondered if I'm having a heart attack but then it goes away and I almost immediately go back to feeling normal (well my normal) so I've put off doing anything about it. One October morning about 10am I got woken out of a dead sleep by this stabbing pain. It was the worst it has ever been. This time the pain migrated up the right side of my neck/throat into the right side of my face before settling into the more normal tight band around my chest. I was scared enough to fess up that I should prob go to the hospital. Well this set of an astonishing chain of events.<br />
<br />
First hubs got grouchy that he had to, yet again, take me to the ER. He asked me where I wanted to go. I told him that we should prob go to the hospital ER but the walk in clinic two towns over would be open also. So rather than going to the hospital which was much much closer he decides to head to the walk in clinic. The waiting room was full to busting but I got to cut to the head of the line because "heart attack". After I had a team of women working on me doing vitals, EKGs etc one of the PAs told me that she knew me. Turns out she was the PA to my regular doc many years prior so we chatted a bit and she told me off for not going straight to the hospital. She told me that they were arranging transport for me since it might be a 'heart attack'. Righteo. 'Can I go to the bathroom before you stuff me in an ambulance?" "Sure." I go and do my business but when I hobble out of the bathroom not one but three ambulances, a fire truck, the police and a rescue unit were waiting for me. Turns out the staff decided that transport would take too long and they called 911 instead. I had most of the Wilmington rescue services there as well as three private ambulances. I got loaded onto the gurney nearest me and off I went to the hospital. You should have seen the bill sent to Medicare. Thousands of dollars.<br />
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The EMTs were great but I did get chewed out for not going straight to the hospital. He asked me why and I told him to talk to my husband. Then his cell phone went off and he had the Star Trek communicator ringtone which got us talking about scifi movies and made me very happy.<br />
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I spent the next several hours in the ER hooked up to various machines. Lots of blood was taken. They finally told me that I was going to be admitted for observation and more tests. The hospitalist, who is supposed to be my patient advocate,showed up and I took an instant dislike to him. I never saw him again even though I was there for three days. Hubs went home around 10-11pm while I was still waiting for an open room. I got formally admitted around midnight. This seems to be the norm for this hospital. I get held in the ER and if I am admitted it is usually after midnight. Must be some magical insurance thing.<br />
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Anyway, I never see my husband for the rest of my stay. I get a terse phone call the next day where he tells me he is sick and shouldn't show up. I beg my son to come and bring me a huge latte from Starbucks. So there I am by myself in the hospital room, hopped up on pain meds and now suffering from sleep deprivation. Since I'm in the cardiac wing they do vitals every couple of hours rather than letting you sleep any length of time. In comes the Mr Cardiac Doc. He asks me a few innocuous questions then suddenly turns to me and forcefully announces "You are obese! You are going to die!" He said more after that but I have no recollection of anything else he said. All that rattled around in my brain was "You're fat and you're going to die!!" I think my mouth was hanging open but the day is pretty fuzzy. I had wanted to talk to him about my CFS/ME and the stress test he wanted to do. He started telling me about the treadmill and I interrupted him to tell him about the CFS/ME and how I couldn't walk on a treadmill and he launched into another rant "I've been doing this 27 years...." at which point I knew it was useless to try to talk to him. He saw me as a fat blob that he had to fix. A 5'2" 290lbs woman with chest pain. Of course I was going to die of heart failure. It didn't matter that I have excellent blood pressure. It didn't matter that my cholesterol numbers, while not perfect, are still within normal range. It didn't matter that I have no family history of heart problems. It didn't matter that I used to exercise every single day and was in great shape despite being fat (fit fat it's called and yes it is a thing). It didn't matter that I had gained most of my weight due to meds and steroids. It didn't matter that I can NOT exercise due to my illness. I HAD to walk on his stupid treadmill even though the stress test can be induced chemically. He was going to prove me wrong! Of course I knew I wouldn't make it very long on the treadmill so I'm like "Game on, asshole!". <br /><br />So the next day comes and I'm scared. I haven't slept well in two days now. I've been on oxygen continuously "just in case". They keep alarming my bed but I've figured out how to turn it off and the nurses are too busy to notice. Dr Ahole has ordered a low fat no salt diet for me which when combined with the gluten free corn free diet leads to NO food choices so I'm now starving and caffeine deprived on top of everything. I get rousted out of bed and sent down to the cardiac lab. I have an ultrasound done of my heart which comes out pretty good and then I get sent over to the treadmill room. They put a harness on me. No one explains what is going on. They make me sign papers that I can't read. I'm freezing cold and they park me in a cold plastic seat with the johnny hanging open due to the harness. Loud rock music is blaring over my head. This isn't going to go well. I get left there for 20-30mins. I can feel myself descending into head bobbing territory. Finally the crew shows up: the nurse, Dr A'hole and the nuclear med nurse. Dr A'hole proceeds to tell me how great I'm going to do on the treadmill. I mumble "uh huh" and go over to it and climb on. They start it and already it is going to fast. My normal gait is much slower. Then they incline it. I almost burst out laughing. "Oh this is going to be good!" runs through my head. I'm holding onto the handle bar for dear life and am already breathing heavily. I time the breath to the steps. Then the ataxia starts. First my feet start dragging. Then I start staring at my hands gripped onto the handlebars. My head starts bobbing in rhythm to my feet. All three of them panic. Dr Ahole is yelling "Shut it off! Shut it off! She is going to pass out!" The nurse is scrambling to shut down the equipment and the treadmill. The nuclear med nurse who is a burly guy is trying to catch me and inject me at the same time. The doc tries to put a chair behind me on the treadmill but the nurse waves him off because she doesn't want the treadmill damaged (fuck the patient). They manage to get the radioactive dye into me and me onto the gurney and now I can't speak. The nurse is asking what happened and I manage "Ataxia. Ataxia starts when I exercise too much." She was confused as she had never heard of it but Dr A'hole knew what it was. They covered me in blankets and of course part 2 of ataxia is a panic attack. I still had no idea what was going on. I didn't know what they shot me up with. I didn't know what was supposed to happen next. They covered me in blankets and left me alone in the room again. I could hear Dr. A'hole on the phone transcribing his notes on my disastrous treadmill episode. I had lasted 1 min and 9sec. They had to stop the test early so the data might not be useful. "Fuck you Doc! I showed you! Asshole!" I wanted to scream at him. I did end up getting stuffed into an imaging machine while having a panic attack. I was a mess. Nothing like being completely at the mercy of an abusive doctor. It was a horrendous experience. Having no family there made it worse. God knows where hubs was. I never saw the cardiac doc again. Whew!<br />
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When I saw the floor doc, he told me that he had reviewed my chart and tests and thought I was probably having gastritis (inflammation of the lining of the gut) from taking Celebrex for four years straight. He doubted that I had anything wrong with my heart but I still had to do the second part of the stress test. However, no one could tell me what that second part entailed. He asked me how I was doing and how I was feeling and if I was tired. I told him yes. I was exhausted and I couldn't eat anything they were giving me. A few hours later a nurse popped in to tell me that I could leave that afternoon if I promised to show up the following day for the rest of the stress test. I agreed and went home with my son.<br />
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This wasn't the end of the ordeal however. Oh no. Things couldn't be that easy. Hubs was running a 103F fever. He couldn't drive me anywhere so my son had to take another day off work to drive me in for stress test part two. With my brain now working, I asked the second nuclear med nurse to explain what was going on. Turns out the treadmill is done first, then you get shot up with dye and put in a special CT scanner that is just for imaging the heart. Then you go back on the second day when you are all relaxed, you get shot up with dye again and imaged again so the two can be compared to each other. The long waits I had the day before were for the dye to permeate my system so that they could do the imaging. Geesh if they had just taken the time to tell me what was going on the day before. We are done in under two hours. <br />
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Hubs is still sick. My son and I are ignoring him at this point as he is just sleeping in weird places all over the house. He built himself a pillow fort in one room and slept on the floor there. I asked him if he needed to go to the ER since he was whingeing so badly. He said no but he ended up at his docs the next day. Turns out he had a bad case of flu that had turned into pneumonia. So here I am fresh out of the hospital and supposed to take care of him. Not going to happen. He never asks how I am or what happened. If he talks at all he just complains about how awful he feels. I am livid.<br />
<br />
I go to my doc for a follow up. He tells me that I have pulmonary hypertension and wants me to do a follow up with the cardiologist. I told him I flatly refuse to see the guy from the hospital. He asks what happened and I almost break down in tears so to avoid crying I don't tell him how nasty he was. Just that I want a different doctor. My doc explains the hypertension as a pressure difference between the heart and the tube feeding blood to the lung. Okay. So far so good. Until I get home and Google it. Holy mother of God I'm going to die! Turns out this is horrible. It can't be fixed and it is rare enough and deadly enough that there are specialty centers set up around the US to deal with this and everyone recommends going straight to them and not dicking around with a regular cardio doc. Luckily I'm near Boston and there is a center at Brigham and Women's where I've already been a patient so I'm in their system. I set up an appointment with them but it will be a month before they can get me in. I see the regular cardio doc in the meantime and he tells me that I don't have pulmonary hypertension and it was a freak data point in the echocardiogram. Whew! I still want the expert's opinion though just to put me completely at ease. The specialist confirms no hypertension. YAY!! <br />
<br />
However, both docs insist that I start an exercise program. I try to explain CFS/ME to them and all we do is argue. I give in. They are cardio docs. Their mantra is diet and exercise. I've got the diet part down but I can not exercise and they just can't wrap their head around that. They both guessed that I have sleep apnea so now I have a apt at Faulkner Hospital in Boston for a sleep study but it isn't for another two months. Sigh. Hurry up and wait. <br />
<br />
In the meantime, I'm completely wasted from the hospital ordeal, the cardiologists, the trip to Boston, being scared that I was going to die. I was actually planning out arrangements. I have the worst two months of my illness all year and winter hasn't even begun yet. Normally October is my best month of the year. Gah! Thank goodness my mum came for Thanksgiving. I slept so much while she was here. I started to feel more like my old self. Kid had gone on vaca to Mexico and hubs had rushed out to Chicago to help his brother who has cancer and took a turn for the worse. It was just me and Mum and it was great. No sched to keep. Relaxed meals. I could go back to bed whenever I wanted. It was great and I was bummed that it had to come to an end. <br />
<br />
BTW, in case you were wondering. Hubs and I are talking to each other again. It took a while though. I was really really angry. <br />
<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQeX6rFeISh1TRDgJASsOxUzZrtmXxVruOa_6IiKVr4PRVtbFPGk_6NyDVWYSa_nRHuJCmXavRu6TZcpNdkjzcnu_jnodXkE7D1z2lPNs8OR0z6_38Bm9APeIRyqEGw60zBBMDf6EU5K5N/s1600/hosp+2015+blacked+out.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQeX6rFeISh1TRDgJASsOxUzZrtmXxVruOa_6IiKVr4PRVtbFPGk_6NyDVWYSa_nRHuJCmXavRu6TZcpNdkjzcnu_jnodXkE7D1z2lPNs8OR0z6_38Bm9APeIRyqEGw60zBBMDf6EU5K5N/s320/hosp+2015+blacked+out.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fuck CFS!</td></tr>
</tbody></table>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-70885232745501873662016-01-10T16:35:00.000-05:002016-01-10T16:35:09.386-05:00AccoladesWhile I've been busy being sick rather than writing, someone found my blog and decided that it was worthy of an award! Just when I thought no one was reading this. I guess I have to attempt writing again. I have lots of material saved up but it is mostly links to other pages. I have to flesh out the writing so that it makes sense to folk other than myself. <br />
<br />
Anyway, thanks for reading!! Hopefully I won't be too sick to write. <br />
<br />
Here is the linkback to the award site. The page looks pretty darned good with lots of info.<br />
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<a href="http://www.chronicpaindisorders.com/the-10-best-fibromyalgia-blogs-for-2016/">http://www.chronicpaindisorders.com/the-10-best-fibromyalgia-blogs-for-2016/</a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-88362429665934904012015-12-29T00:46:00.000-05:002015-12-29T00:46:44.279-05:00CFS/ME and The GutOne of my first health problems after coming down with CFS/ME was my gut. Food made me sick. Very sick. I would get nauseous no matter what I ate and my acupuncturist put me on double boiled white rice just so that I could eat something. I rapidly dropped over 20lbs. My gut slowly recovered and over the course of a month or so I could slowly add foods to my rice and eventually graduated to soups. That was in 2010 but that was the start of my gut problems.<br />
<br />
I damaged my gut decades ago. Unbeknownst to me I had both osteoarthritis of the spine and fibro. All I knew is that I was in great pain so I started taking the industrial strength ibuprofen I had been given for use after a surgery. It very quickly wrecked my intestines. About 15 years later I developed a wheat intolerance so my gut was pretty not okay even before the CFS/ME insult. Then I contracted CFS/ME. It wasn't until I did a Paleo Whole 30 and then a modified GAPS diet for a year after that that my gut finally started to heal. Four years later and I can now tolerate wheat in small doses and am generally much better off than I've been in years.<br />
<br />
However, my gut problem have come back to haunt me recently. After four years straight on Celebrex for my headaches and joint pain, my gut finally rebelled and put in me in the hospital with gastritis, a painful inflammation of the gut lining. So it is with some interest that i saw this recent study done on the gut microbiome of CFS/ME patients. The only bit I don't agree with the authors on is that they jump to the conclusion that the differences they discovered in the gut and blood of PWME are the cause of CFS/ME symptoms. That is a HUGE intellectual jump with not a lot of foundation under it. Other than that the study has some interesting results.<br />
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<div class="title-authors" style="background-color: white; box-sizing: border-box; color: #333333; line-height: 12.8px; margin: 0px; padding: 0px;">
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<span style="font-size: small;"><a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0145453" target="_blank">Changes in Gut and Plasma Microbiome following Exercise Challenge in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)</a></span></h1>
<ul class="author-list clearfix" data-js-tooltip="tooltip_container" id="author-list" style="box-sizing: border-box; color: #666666; font-size: 13px; line-height: 1.125rem; list-style-position: outside; margin: 0px 0px 0.625rem; overflow: visible; padding: 0px;">
<li data-js-tooltip="tooltip_trigger" style="box-sizing: border-box; float: left; list-style-type: none; margin: 0px 0px 0px -3px; padding: 0px; position: relative;"><a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0145453" target="_blank"><span style="box-sizing: border-box; display: inline-block; font-family: inherit; line-height: inherit; padding: 2px 4px;">Sanjay K. Shukla <span class="email" style="background-attachment: initial; background-clip: initial; background-color: initial; background-image: url("../../resource/img/icon.author.email.png"); background-origin: initial; background-position: 0px 0px; background-repeat: no-repeat; background-size: initial; box-sizing: border-box; display: inline-block; height: 0.8125rem; vertical-align: middle; width: 0.9375rem;"></span></span><span style="box-sizing: border-box; display: inline-block; font-family: inherit; line-height: inherit; padding: 2px 4px;">,</span></a></li>
<li data-js-tooltip="tooltip_trigger" style="box-sizing: border-box; float: left; list-style-type: none; margin: 0px 0px 0px -3px; padding: 0px; position: relative;"><span style="box-sizing: border-box; display: inline-block; font-family: inherit; line-height: inherit; padding: 2px 4px;"><a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0145453" target="_blank">Dane Cook,</a></span></li>
<li data-js-tooltip="tooltip_trigger" style="box-sizing: border-box; float: left; list-style-type: none; margin: 0px 0px 0px -3px; padding: 0px; position: relative;"><span style="box-sizing: border-box; display: inline-block; font-family: inherit; line-height: inherit; padding: 2px 4px;"><a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0145453" target="_blank">Jacob Meyer,</a></span></li>
<li data-js-tooltip="tooltip_trigger" style="box-sizing: border-box; float: left; list-style-type: none; margin: 0px 0px 0px -3px; padding: 0px; position: relative;"><span style="box-sizing: border-box; display: inline-block; font-family: inherit; line-height: inherit; padding: 2px 4px;"><a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0145453" target="_blank">Suzanne D. Vernon,</a></span></li>
<li data-js-tooltip="tooltip_trigger" style="box-sizing: border-box; float: left; list-style-type: none; margin: 0px 0px 0px -3px; padding: 0px; position: relative;"><span style="box-sizing: border-box; display: inline-block; font-family: inherit; line-height: inherit; padding: 2px 4px;"><a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0145453" target="_blank">Thao Le,</a></span></li>
<li data-js-tooltip="tooltip_trigger" style="box-sizing: border-box; float: left; list-style-type: none; margin: 0px 0px 0px -3px; padding: 0px; position: relative;"><span style="box-sizing: border-box; display: inline-block; font-family: inherit; line-height: inherit; padding: 2px 4px;"><a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0145453" target="_blank">Derek Clevidence,</a></span></li>
<li data-js-tooltip="tooltip_trigger" style="box-sizing: border-box; float: left; list-style-type: none; margin: 0px 0px 0px -3px; padding: 0px; position: relative;"><span style="box-sizing: border-box; display: inline-block; font-family: inherit; line-height: inherit; padding: 2px 4px;"><a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0145453" target="_blank">Charles E. Robertson,</a></span></li>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-30583707649682888642015-08-22T00:51:00.000-04:002015-08-22T00:51:00.525-04:00The Downward SpiralI'm in a prolonged crash. It has been a crappy year for me. I had a bad sinus infection this past spring and I had to do several courses of antibiotics to get rid of it which messed up my stomach. Then due to the insane weather here and my weird sleep schedule I haven't been able to sunbathe to catch up on my vit D. To top it all off I've had several super heavy periods that needed prescription progesterone to stop. Each of them sent my already low iron levels into the basement. It has been hot and humid for weeks now which makes me so much worse. Even in the AC I'm sitting directly in front of a fan. The AC unit in my bedroom is so old it no longer dehumidifies the air so while it is cooler in there it is still soggy. Those are the physical hits I've been dealing with this year.<br />
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The emotional hits haven't helped either. My CFS consulting doctor retired earlier than he told me he would. I thought I was going to have one last visit with him this year but I called and they told me had already left the practice. I shopped around and carefully chose a new treating CFS doctor and after herculean efforts on my part managed to get an intake appointment, extensive nutritional testing done and one follow up appointment. At the second appointment he gave me tons of paperwork. Reams of it, which I thought odd at the time. A week later I got a letter that the practice is closing due to financial difficulties. It has been a month since then and I still haven't received my medical records from them. They won't answer the phone and won't call me back.<br />
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So I tried calling my second choice and they don't take insurance of any kind. The intake process alone will be over $1000 out of pocket and I can't get a straight answer out of the office chick as to what their fee schedule is. I think I'm going to try back at the Marino Center again but with a different doctor.<br />
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Then to add insult to injury I get a letter from Prudential that they are reviewing my disability case so I have to assemble two years worth of medical records, sort them all out, make copies and write extensive explanations of my illness and why I can't possibly go back to work. GAH!!<br />
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I want to go on vacation. I want a house on the beach so I can just walk out the back door and straight into the water. I don't want to cook. I want to sleep and be quiet for at least a week. I don't want phones or internet or TV or paperwork or doctor appointments or endless minor arguments with hubs. I want to be alone and quiet and well fed and sun drenched and water logged. Even us sickos want a vacation. Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6707505323244937374.post-69678125915911782742015-08-11T23:14:00.002-04:002015-08-11T23:14:27.762-04:00Vagus NerveFrom personal experience, I believe that inflammation is key in generating a good deal of the symptoms of CFS/ME. I got considerably better when I had cortisone shots in my joints for an unrelated problem. The symptoms quickly returned as the steroids wore off. None of my docs would prescribe a regular course of steroids to help with CFS/ME since it would be an off label use. <br /><br />It turns out that stimulating the vagus nerve reduces inflammation in the ENTIRE body without the nasty side effects of steroids. Now I'm on a quest trying to find out how to stimulate my own vagus nerve. While I would love to have the pacemaker type device implanted in my shoulder, it isn't available for use in CFS/ME yet. <br />
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Here is various information on the vagus nerve and vagus nerve stimulation.<br />
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BBC podcast (20mins long and explains the pacemaker style device)<br />
<a href="http://bbc.in/1ycMkCm" target="_blank">http://bbc.in/1ycMkCm</a><br />
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The Gut Brain Axis (hint the vagus nerve is the info highway between the two)<br />
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Cort Johnson's article on The Search for Neuroinflammation in CFS/ME<br />
<a href="http://www.cortjohnson.org/blog/2015/06/16/search-neuroinflammation-me-cfs-fibromyalgia/" target="_blank">http://www.cortjohnson.org/blog/2015/06/16/search-neuroinflammation-me-cfs-fibromyalgia/</a><br />
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Of course this would all go faster if someone would cough up a sizeable chunk of money for some research on actual CFS/ME patients. If it could get approved I would be first in line to give it a try.<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6707505323244937374.post-54116386123793387782015-06-14T02:42:00.000-04:002015-06-14T02:42:53.252-04:00House ShoppingBeen gone a long time I know. I just haven't felt like writing. Of course being wicked sick for most of the spring season didn't help matters much and I've been juggling doctors' appointments. But to be brutally honest I just haven't felt the urge to write. <br />
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On to today's topic: house hunting. Hubs and I finally purchased our own house in 2000. We knew very little about house ownership. Although both of us grew up in single family homes, neither of us were involved much in maintenance. In hub's case he was too young and his Mom moved into a condo after his dad passed. In my case, my father didn't maintain the house at all. I had to learn carpentry, painting, electrical and plumbing from books in order to fix faucets, light switches, etc. I knew nothing of construction, heating systems, etc. <br />
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The house we bought was originally built as a small ranch with slab heat. A hundred year old map of the area showed swampland and there is indeed still swampland in walking distance of the house. Hence the high water table and the slab style house (wood structure on a single poured slab of concrete). The structure was then added on to twice. The first addition was by the original owner who put on a second floor. The second by the second owner who added a massive livingroom, kitchen and loft to the back of the house. The fact that there is no basement has lead to some funky plumbing which for various reasons have frozen and burst at different points during the life of the house. Then one of our renovations drove a cement fastener through the return line of the heating system effectively killing the slab heating system.<br />
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During our various renovation projects we found evidence of mold inside the walls from the aforementioned leaks. We would remove the damaged materials and then put up fresh insulation and drywall. The leaks had been repaired at some point but the water damage inside the wall hadn't been addressed so mold grew. After the slab heat quit working, I started noticing musty smells in various corners of the original building. Then I learned that concrete isn't supposed to be in contact with the timber framing of the house. I know for a fact that not only do the walls sit directly on the concrete slab but that the slab is not sealed and the carpet is just laid on top of the concrete with only the rug pad as a barrier. So NOT cool. The quilts that were stored under the bed smelled musty when we brought them out. I can no longer store paper goods under the stairs since they smell musty when brought out. I guess the slab heat used to burn off all the mold and mildew but now the cement is just wicking the damp from the ground inside the living areas right up through the rugs. Sigh....<br />
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Last fall I started to follow a mold group on Facebook which scared me silly. While I have had fibro since my mid 20s, the worst flare ups have been during construction projects on this house. I haven't gone through and verified medical tests with construction dates but if I were a betting person I'm guessing that there is some correlation. I do know that being shut in the house over the winter makes me worse. Again not sure if it is vitD deficiency or mold exposure or both. After scaring myself, I decided that I want a new house. <br />
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Hubs doesn't want to fix anything anymore either. Once I got sick we also didn't have the money for huge projects and he prefers to use the money we do have on cars and racing. So we have a house that still needs a new kitchen and quite a bit of work to remediate the mold problem. Easier to move. <br />
Now we are house hunting or should I say I'm house hunting. I hand hubs a list of houses that he rejects for various reasons and I go back on Trulia again. He has finally started to look at houses but only the ones he likes that have huge garages attached. We just missed a house that would have been perfect for me but only had a two car detached garage. He waited too long to arrange a viewing and it is under agreement. Poop.<br />
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Today I went to look at one and it is such a mixed bag. It is perfect for him but pretty horrible for me. The layout is super funky because it has had two large additions put on. The driveway and garage are at basement level. The front door is between floors as it is a split entry. The main floor has a small kitchen, living/dining room, decent size bedroom and the only full bath. Then there are nine steps up to the rooms above the garage which are a HUGE master bed with walkin closet and another large bedroom and a small useless sitting area. The master has a small deck with a spiral staircase to the backyard. The kitchen has a balcony but no stairs into the rear huge family room addition. The actual access to the family room is down the front stairs and through the basement. Access to the backyard is the same, down the front stairs and through either the basement and family room or through the workshop: i.e. grocery hauling and BBQing will reach a whole new level of pain in the ass. I also won't be able to make it outside if I'm doing badly.<br />
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The upshot is hubs LOVES the garage and workshop and it is laid out perfectly for him. For me all sorts of renovations have to happen to make it usable for me: at least one chair lift, a brand new bathroom (there is a tiny corner model shower stall that won't fit a shower seat in it), either a wheelchair ramp to the front door or a step removed to make a wheelchair friendly path from the garage to the front stairs and possibly another lift/staircase from the kitchen to the back family room. The basement room also needs work as it is laid out terribly and I would love to have a clothing care room that would include the laundry, sewing area and ironing area. Plus the downstairs bath only consist of a toilet and sink crammed in next to the HVAC unit. Ideally a powder room should be installed next to the master bedroom since there is no bathroom on that level despite the colossal master bedroom.<br />
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I like the location. I like the land. You can still hear some road noise despite all the trees but there are tons of birds. Apparently the traffic is pretty bad in the area so things will be worse not better in that regard. Easy access to NH from there though. The border is 10mins from the house. I would need new health care providers since trekking down from there would be just too much for me and also all the people I see would be outside the paratransit coverage area. Good thing there are two large medical hubs near there but they won't be as good as where I am now. I'm really not looking forward to doctor shopping again.<br />
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It is such a mixed bag. Some of the renovations are great but the layout is dumb and the kitchen is small. If I make the kitchen bigger it is going to overwhelm the space it is in but I need more in order to cook properly. Lots and lots needs fixing and I don't know if hubs is going to take care of that. I guess I don't trust him in that regard since the renovation of this house didn't go the way I wanted and it was never finished. My current kitchen is literally falling apart since they installed really cheap nasty cabinets when it was thrown together in the 80s.<br />
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I didn't smell any mold in the new place but the shower stall is horrible and I'm worried that when that gets pulled away from the wall they'll find problems back there. There is also water damage in the workshop where the back deck is which means there will also be water damage in the family room that can't be seen due to the flooring. I think the ground is probably pitched towards the house so the runoff from the roofs ends up seeping into the building. In that case the entire deck has to come out in order for it to be repaired. Probably a french drain needs to be run around the outside to get the water away from the house and then the deck needs to be rebuilt.<br />
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Nice place but lots of repairs and upgrades need to happen to make it even usable and bring it up to code. Geesh....<br />
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And then there is all the furniture we would have to buy since we have to get rid of most of our old stuff due to mold. The whole thing makes me sad and angry. Unknownnoreply@blogger.com1