EarthMother

I'm not a fan of the sugar content in Gatorade. I did it for two years before I developed systemic Candida and still wonder if it was the culpret. There are other electrolyte waters that do not contain artificial things. Also someone on the board posted this product: http://mineraloasis.com/merchant2/merchant.mvc? It is a salt spray that has other minerals and can be used in plain water or on food etc. I picked some up and love it! Good luck on your personal journey in finding what works for you. EM

Welcome to the wonderful world of new adventures with food. I've posted my web site before that has lots of gluten free recipies: http://www.coolkarma.com/Foods/index.html Turns out I am not gluten sensitive, so I can have rye flour and barley etc. I even seem to be able to handle SPELT (it's an ancient wheat grain that is non-hybrid and non GMO) But I only have it once or twice a week. For more on SPELT: http://www.purityfoods.com/ I buy in bulk at various places on the web including: http://www.glutenfree.com/ http://www.authenticfoods.com/ http://www.edenfoods.com/flash/index_flash.html I also found places that delivered goat cheese, electrolyte water and other "strange" items I couldn't find in my neighborhood. The web was my best shopping source. As for peanutbutter .... I now alternate between a variety of nutbutters including soynut butter and sunflowernutbutter. We have a local chain called Trader Joes that carries a wonderful brand for each. For me I realized it wasn't so much "what I ate" but how often I ate it. Now I keep a rotation diet and can eat most foods just not twice in 4 days. So for instance, today I am eating Corn and Cheese (lots of veggies, fruit etc. but I focus on the cheese as my protein for the day.) So I make quessadillas or corn bread (with corn meal no wheat flour). Then tomorrow I'll have soy and rice, the next day SPELT, then the next lentils or other beans. It takes some work at the beginning of the week to plan meals, but I've been doing this for 3-4 years now and my family looks forward to the variation. Good luck in your adventure. EM

Finding our comfort zone and trying to stay within it doesn't make us any less mature and responsible. I often spend so much time trying to figure out the "right" answer for a problem. I make lots of lists of pros and cons, I make contingency plans upon contingency plans and then finally I make a decision. Wouldn't you know most of the time things never end up quiet like I imagined. Too many variable that I didn't anticipate and new goals and circumstances throw me for a loop. Having a body that is often "out of control" makes us yearn for solid ground under our feet. A wise person once told me to "Follow my heart, not my fears." Sounds like your heart is leading you down a wonderful path. Enjoy the adventure, wherever it takes you. I believe it is our destiny. Our job is only to enjoy the ride ... the scenery, the scents and yes the potholes too along the way. With light and love, EM

What happened to the good ol' days when seniors were allowed to go OFF CAMPUS for lunch? It's a shame our whole educational system has had to be walled in, locked up, dog sniffed with armed guards at every gate. Fortunatley it's just a matter of a few more weeks and you will be DONE with gym class for the rest of your life. Congratulate yourself on making it this far and my congratulations to YOU for being such a wonderful educator for all those that you come into contact with. My sense is you'll find a way to make this work for the rest of the term .... but if it ever gets too hard to handle use the word "harrassement" and see if they don't change their tune. Good luck and enjoy the rest of senior year ... it can be a remarkable time. EM

I would have thought that too before I did some reading. I never had a yeast infection or any signs of oral thrush. But systemic candida is different than what we "know" of as a yeast infection. Good luck, I hope you find something that helps soon. EM

Dear Briarrose, No matter how hard our personal healing adventures become, they seem so much easier than when we have to watch our children suffer. Gentle hugs your way. It sounds like you are doing all the right things and following up the best you can. My friend's son (16) has also missed a tremendous amount of school this year do to diarehea and vomiting. I think the allergist is a good bet, I'd wonder about dairy. I know when I went off wheat and dairy (for over one year, many of my symptoms improved.) The other piece of the puzzle for me was systemic candida. They can do a simple blood test to see if your daughter had high levels of internal yeast. My doctor used immunolabs.com, but I think other people do this test as well. Systemic yeast infection can look just like IBS. And it's simple to "cure" -- some people use an intial dose of anti-fungal but then it's all about diet. No sugar. Really no sugar. No fruit, no maple syrup, no ice cream, no cake, no nothing. Ok, it's not so simple to carry out. We are addicted to sugar and the feelings of clinical depression can accompany the withdrawal. But if you can stick with it -- it passes. I noticed improvement in 2 months and stayed on a strick anti-candida diet for probably 9 months. I've been tested twice now over the last 2 years and I continue to be candida free! I've gone back to a small amount of sugar (both natural and processed) but will always keep this a very small part of my diet. If you want to read more about candida: http://www.yeastconnection.com/default.htm http://web.archive.org/web/20030626172819/...r.com/jbayliss/ http://www.parentsofallergicchildren.org/candida3.htm Good luck dear, my sense is your personal journey and the wisdom you have gained will be the most important factor in your daughter's healing process. EM

Hugs to you dear. I know how you feel. We want them to understand, or at least TRY to understand and on days like today it doesn't feel like that will every happen on the home or medical frontier. Lot's of good advice here ... I love the sage words about finding a friend to talk to. Husbands are wonderful for so many things ... but no matter how hard we try we can't make them into all the wonderful things rolled up into one. That's why we have each other here. It's so hard not to take things personally -- but sometimes the truth is just too painful for them to hold. We are their lifeline, even though it doesn't always seem that way. But when we are in pain -- they want the pain to stop .... so they tell us not to worry about it, because in reality the reality of it all is too much for them to bear. If you want Xanax, your HMO doctor can prescribe it just as well as any "psychiatrist". Oh and they love it when you use their name in "quotes". So the next time you are with Dr. Strangelove, just say ... 'Listen "Doctor" ______, if this is the best you have to offer then I'll take what is behind door #2." We need a live chat room so we can come together at the end of day, especially a day like today. I've been trying to figure out how to put one up on my web site, but I can't quiet get the CGI's to work. But I'll keep trying. Maybe we could have a phone tree. We can exchange phone numbers off line and know we have voices to talk with out there when the flood waters start to rise. Good thoughts, EM

1. Nancy 2. 41 3. POTS (CFIDS, Autoimmune Thyroid, EBV ...) 4. POTS is just this year, Hashimoto Thyroid in my 20's and EBV about 6 years ago with my diagnosis of Chronic Fatigue Syndrome 5. California 6. Symptoms at worst: I've had two spells in the last 6 years that pretty much kept me down in bed for months at a time. At the worst, I can't stand up at all, sitting up is exhausting ... and the panic, well that's just the icing on the cake. Other symptoms include extreme morning nausea, 30+ heart rate increase on standing, hot and cold flashes, rapid weight loss, heart palpitations ..... 7. Symptoms at best: If best is these last 6 years ... I can do the grocery shopping on a "good day" but then I need to lie down for an hour or so to recover. I can work but I need to take breaks. During a good spell that might just be a long lunch hour (or two) during this recovery I work part of the time from my home. 8. Medications/treatments, etc. that didn't work for you Hard to say, I've done Florinef before, can't really say it helped or hurt. Eventually I just improved gradually. I've tried several of the Xanax and other lines of SSRI's or anit-panic meds .... never have been successful on any of these so now I fly solo. I took gatorade for about two years ... then developed systemic candida which I attrib to the sugar, so that's out now. 9. Medications/treatments, etc., that do work for you In December I started taking DDAVP (anti-diuretic) and have been able to put back on 10+ of the pounds I lost in the summer with this most recent crash. I also take between 600 - 800 MG of magnesium which helps the heart palps. I wear those high compression thigh highs, they help on some days. Other things I do that I attribute "improvement" to include massage therapy, QiGong (or Pranic Healing), and Somatic Experience Therapy. But the #1 thing I do that helps ...... Come to this board.

In the CFIDS (Chronic Fatigue Immune Dysfunction) / FM (Fibromyalgia) world we call the phenom "Fibro-Fog" because it seems to be such a common characteristic of these chronic disorders. For us, brain fog is something like a slow mental crawl. Concentration seems very difficult and doing things like simple math can be painstaking. For me these episodes are short lived though terribly frustrating. All I know is I can't think straight and I get very confused. I've come to recognize the "fog" and know that it's not a time to make major decisions. If I rest -- shut down all mental noise -- for awhile it usually goes away. But during the "bad days" the brain fog can loom for much longer. EM

Louby, when is your test? (What time of day, I'll do the math for my time zone) -- I'll make a note to keep you in my thoughts during your procedure. I'll picture you on a sunny day by the ocean. With the warm sun glowing down on you and the smell of salt and surf in the air all around. The feeling of groundlessness as we venture off to new adventures is indeed one of the biggest challanges we all face. Keep in mind that you are in control. You can tell them STOP at any time -- knowing that you can say NO sometimes helps us get through the discomfort ... and we can hold out until it is over. I think you are very brave. Louby ... our pioneer in pink! Warm hugs to you dear. EM

Heart palps are the worst. My cardio says the same thing ... don't worry about them, it's part of POTS. Easy for him to say. Trying to re-program our brain after so much conditioning is a challange. But I am working hard at it. Have you read up on Magnesium supplements? I know my cardio is a big fan of them. I've been taking up to 800 mg a day (in 3-4 doses) and it makes a world of difference in the frequency of my irregular beats. I know there is a book called "The Miracle of Magnesium" by Dean. (It was recommended to me, I haven't read the book.) There is lots on the web like: http://my.webmd.com/content/article/29/172...e_&_Top_Stories http://www.mgwater.com/listc.shtml http://www.immunesupport.com/library/showa...text/magnesium/ Good luck, EM

My mother takes Noni (supplements not juice because the juice tastes really bad) for her fibromyalgia, she's very fond of it. I bought some Noni tea last month ... it's still sitting up on my shelf. Maybe I should go make a cup tonight .... or maybe I should just have a cup of ice cream :-) EM

Congratulations! Let me shake your hand .... on second thought maybe a gentle hug (((((denabob))))) Thanks for sharing good news. EM

I got a call today at work from my teenager who felt ill at school and needed to be picked up. It wasn't a "problem" my husband was able to drive us over there and back home. But I noticed that my body was shaking and racing even though I didn't "feel nervous" about the disruption. In general though I think I really just can't handle STRESS, no matter how small or insignificant it seems. Any change in routine seems to throw my whole system off. I happened to have a follow up appointment with my cardiologist today and asked him about it. I said it feels like my autonomic nervous system "over-reacts" under stress. And he agreed but said that it really wasn't my ANS as a whole but rather my "receptors". He said, if we had looked at my adrenaline level during the car ride to the highschool, my lab work would have been normal. Instead it was my receptors that were being over-reactive. Wish I knew what receptors he was talking about and I probably would have continued to ask, but I know he is busy with pace-maker patients and "real emergencies". So I left it at that. He looked up at me before he left the room and said something like "POTS is so frustrating for doctors, " I shot him a raised eyebrow and he added "oh and patients too. Bbecause we really don't know what to do for you. And that's hard for us." I smiled and knew he was sincere and that's all that really mattered at that moment. EM

Here's a link to an example of the cordless keyboard and mouse: http://www.officedepot.com/ddSKU.do?level=...01013_SK_159499 This one was less than $60. I manage a computing department, and I know all of the "buzz words" we as techies use when we want to make something hard for people. Mind you, my staff know that with zen-mother at the helm we don't play that game. However, I frequently hear stories from other computing people who use the "Oh no, they can't have access to our system from home for 'security' reasons" excuse. I've never seen a "security reason" that didn't have a technical solution. These are bright people, they can figure out a cost effective way to provide secure data connections to people so that they can work while away from the office. They just need to have someone high up in the organization saying "make it so." Good luck finding the right people and the right adaptaphones to make new things possible for you. Feel free to drop me a line anytime. I may be able to help decipher the acronyms they throw at you. EM

Dear FutureHope, Hugs and warm thoughts your way. If they permit some people to work at home, you can make a good case for doing some of your job from home as well. However, getting past the "security" red tape of the company's computing department is almost as difficult as getting SDI! Though it can be done. Throw some words around like "secure connection through a VPN" and they'll think twice about dismissing the issue without serious consideration. Computing people are a strange bunch ... 3 guesses what I do for a "living". :-) Changes I made at the office include a couch, softer lighting, a space heater AND a fan plus a wireless keyboard and mouse that I can take over to my couch and use lying down if need be. It's strange ... but that's doesn't seem to surprise anyone. Please check back as you can -- this site is often a wonderful source of inspiration and hope for me on the good days and bad. Good luck on your new adventure. EM

A trip to the beach as we watch the tides and we know the power of the force of the moon. My mother and I were talking about the full moon today also. As I lay awake last night, I thought to myself -- how can anyone sleep when there is a full moon? The beam of light coming through my curtain cast soft shadows on everything in the room. Our version of a white night, the full moon has subtle and not so subtle changes on our bodies. On a very simple level, I think there are more sleep disturbances during the full moon. Everything is awake, birds are confused, dogs or in my case coyotes are howling. It seems all of mother nature is engaged in a midnight dance. Christine Northrop's book on A Woman's Body, Woman's Wisdom talks about the moon. Did you know that most women ovulate at a full moon and then have our period at the new moon? It doesn't always happen this way -- but the author notes that on months when it does she feels much more in sync and in step with all around her. I have noticed this as well. No surpise my little icon is "moonset at sunrise". Interesting question. Sleep well. EM

Gentle hugs your way. It is hard when we struggle through each series of tests, only to find more deadends and more questions than answers. But you know by now, after reading the boards, you are not alone. I have been struggling with the diagnosis of Chronic Fatigue Syndrome for over 6 years and autoimmune thyroid disease for probably over 20 years. It is a battle -- between ourselves and our bodies, between the doctors and ourselves and unfortunatley often between our insurance companies and our sanity. That said, I DO think the tilt table test has been one of the most positive things I have done. There is a sense of validity as we stand there and "prove" that we are not imagining our symptoms. You may be wondering ... what if I am not symptomatic the day I am tested. No worry, if your heart rate doesn't sky rocket they can inject you with meds that will simulate a bad "pots-trip" and then they will still get the information they are looking for. If you are uncertain if this cardiologist is the right one ... call ahead. Ask to speak to the nurse, let her know you want to see if Dr. X is familiar with POTS before you come in for a consultation. When I made my appointment in December, I made sure I let folks know what I was up against and I made my needs clear. I told them I was going through a difficult spell and that I wanted the first appointment after lunch (sitting up in a waiting room is the pits for my pots) and that when I arrived I would ask for a room to lie down in while I was waiting for the doctor. Before I went to the doctors I kept a blood pressure and heart rate journal for two weeks. I did "tests" upon rising, mid morning, lunch time, mid afternoon and evenings. For each I would take a "resting" level -- lying down, then standing and then usually another after staying up on my feet for a few minutes, then one final one lieing down. I brought these to my first appointment with the cardiologist and he didn't hesitate to say POTS and scheduled a tilt table test for the next morning. It's hard being an advocate when we don't quiet feel ourselves. If you have a partner, bring them along. My husband attends all of my doctor visits and tests. Not that he says much, but it helps to know he will speak up if I need him too, and he validates my story through nods, smiles and strong empathetic glances. Good luck on your healing journey. Please let us know how it goes. EM

I get this also. I'm beginning to think our systems are "hypersensitive" and our autonomic system over-reacts to various stimuli that it is receiving. I get the hand shaking and numbness when I am at the computer too long. In my case, the problem is usually in my neck so that's where I concentrate heat or ice or rubbing some kind of ointment that smells so bad the dogs run for cover. My "yard work" today consisted of me sitting in a chair by a small water garden in my back yard :-) Sounds like you were MUCH more productive!! Kudos. EM

Ouch!!!! I hope your body is producing wonderful pain killers and good thoughts your way that you are able to set everything in place again. So who has been a pain in the neck for you lately? Something to ponder ... or chuckle about when you can manage a smile! :-) EM

I read some book called "What your doctor may NOT tell you about Menopause" by John R. Lee M.D. They list several brands in the book like ProGest, Natural Woman, Happy PMS and Serenity Cream. I use the last one, picked it up from my health food store. EM

41 here and my OB didn't blink an eye when I said I felt I was perimenapausal. We didn't bother with any blood tests since I wasn't going to do any hormones (at least not yet) so I began treating it symptomatically. I use an over-the-counter progesterone cream for the two weeks prior to my period and it helps a great deal. I also have a diet high in soy products which seems to help with the hotflahses. My HMO doc suggested I try Black Cohash, which I also liked. There are other people who swear by evening primrose oil and/or flax seed oil. As you can see you are not alone. Trust your body's wisdom and find a doctor who trusts you. Good thoughts, EM

Dear Debabob, As a mother of three I know the guilt. My littlest has no memory of "the good old days" nor a sense of who I was when I could walk on water. I see the dissapointment in their eyes often as they ask "Can we go _________?" and I have to answer, "I'd love to do that if I were able to, but instead why don't we ______." It's easy to feel inadequate when we have limitations. Here's the good news ... everyone else has limitations too. Like the parents who are trying to scrape together loose change to buy bread for sandwiches and the little ones ask why can't we go buy "happy meals." Or the emotionally distant parent who can't open themselves up enough to get down on their hands and knees and embrace their child. Or the corporate mom who gives all she has with long hours at the office to make a better life for her children, and then they look up to her with tear filled eyes and say they just want more time with HER. Children have our heart strings and I am fairly certain science will discover that GUILT is programmed into our DNA! Our children have "different" lives because of our circumstances. I'd like to look at it as fuller, richer lives that will provide them with a broad spectrum of experiences to draw upon later in life as they build their own futures. The other good news is that they do get older and sometimes even have moments of deep empathy and gratitute. My teenager this past summer sent in a long letter to a local radio station and asked for a dedication song to be played on their "love songs" program. When the DJ read the letter on the air and I heard the sweet words of my daughter expressing how lucky she was to have me as her mother ... I broke down and cried, laughed and cried again. We are amazing! and that will not get lost in translation as we raise our children. Good thoughts your way, I am so glad you shared your story with us. EM

Good question! I have read so much about this over the years as I have tried to trace down what causes "Chronic Fatigue Syndrome". There are interesting theories about amino acid deplection, adrenal burn out, and parasympathetic rebound. I suspect there are many roads that lead to our current states. No easy answer and no single cause. Kat Duff wrote a book called The Alchemy of Illness, an autobiography of CFS, and in it she has this metaphore that everyone has this checking and savings account of energy. Those of us who develop chronic fatigue no longer have a savings account to draw upon. Instead we have to use our check book wisely. When we write a check ... we have to save up energy again and replenish our checking account before we can withdraw any additional funds. We may never have savings accounts again. Don't know why ... yawn ... but my sleepy eyes are telling me that I've run out of funds for the day. I had better turn in. Good thoughts and dreams, EM

A heart felt, and misty eyed, thank you to everyone. I have been reading the posts over each day as I try, hope and pray my strength is returning from this most recent set back. Funny thing, I was thinking .... I'll just wait until I get back on the mend before I write .... but today I finally realized, WHY WAIT?! I don't need to be perky and perfect here. There is nothing to prove, no hurdles to jump, no expectations to dash. Thank you all for such thoughtful, kind and encouraging words. It always helps to be reminded during our dark times. Thank you all for holding a candle and keeping the light for each of us when it seems we are surrounded in darkness. I am doing better, slowly this week. I have to remind myself that it is not always a linear path. I am reminded by the boards, that I am not alone in this journey and that -- my sweet friends -- means more to me than words could ever describe. Good thoughts and deep gratitude, EM