DancingLight

Corina, That would be so NICE! Now, the problem is that we all live so far apart...can we find a way to use Harry Potter Magic to get to a place instantaneously???? That would be the best! I miss you too Corina! I bet you will be relieved when all of the workers are done in your house! Emily

Aaaaaawwwww, Ernie...you are so sweet. I just logged on a second before bed and saw your post...and it is a good one to fall asleep to! Thanks... I hope, too, that you will never ever have to endure such an experience again....Now, if we can just get our Sunfish home... Love, Emily

ohmorganwiththebuttofahippo! (sorry, but when you wrote that in an earlier post i about keeled over laughing!) Of course the last thing we want you to have is MD. HOWEVER...an answer...FINALLY. Now, wouldn't that be something? Just to see you sign off with the word 'hopeful' in your name...made me feel good. I feel like somehow there has to be an answer for you...and I hope you find one. Are there treatments that could help at all if this is what you have? It would make sense that MD would also cause ANS problems wouldn't it? Just curious. Anyways, keep us posted, of course! Love, Em

If they are in heart failure, why don't they die???

Bonjour Ernie!!!!! Welcome Home! Oh gosh how good it must feel, as you said, to sleep in your own bed and not be awakened at six a.m. And, of course your dog remembers you! I am sorry that I am sooooo very late to chime in. I followed your story when Morgan posted, and had I known you were reading I would have gotten it together to post sooner. However, you may know that I was asking about you A LOT...Anyone know where Ernie is? Anyone heard from Ernie? I'm worried about Ernie! So, you have certainly been on my mind and in my heart. I was so relieved when you finally contacted Morgan and we got SOME news...it is completely unlike you to be away from us for so long and WE MISSED YOU. It sounds like you went through the most miserable and horrible ordeal and fought like heck to get yourself out of there. It sounds like a medical nightmare how you were treated! UGH. It makes my stomach churn to think you went through all of that. My specialist is always trying to keep me out of the hospital (b/c he is out of town) b/c he tells me they won't know what to do with me if I'm there anyways! I guess that is certainly what happened to you. How are you managing at home now? How are you recuping? I hope you are managing as well as can be expected after all of that... Sorry I am so late to welcome you back...Please know you are loved and were missed so deeply here. Love, Emily

Hey Rita! Thanks for posting about that. I heard it on NPR...and if you want to hear an interview with the doc or read an excerpt from the book, just go to www.npr.org and do a search for 'groopman' and the stories will come up. You can listen or read... I meant to post it earlier, so thanks for posting!!!!! Later alligator! Emily

I'm with you Katherine and Rita... I see one of the top CFS specialists in the country and he is certainly not worried about organ failure or heart failure in me...and I'm a SEVERE case. I think he would have told me if my life was in danger from such things. I'm considered to have Lyme, CFS, POTS and NMH.... Emily

Michelle, My apologies, as I know that I contributed to/created that confusion. I'm always concerned about doing right by Melissa as 'Sunfish correspondent'! Perhaps she has changed her mind since the previous time around... Did you get an update today? Emily

Katherine, I am totally confused too? Plus, it says right at the top 'HYPOTHESIS' so it makes me think there isn't a lot to back it up yet? A confuzzed Emily

katherine, i sent you an email! love, em

Pooh, I'm sure that's the right address...thanks! You're on the ball. It just 'rings a bell' from when I did see Dr. Grubb! Emily

Katherine, The address this time around is a different hospital. She is at the Medical University of Ohio (formerly Medical College of Ohio) where Dr. Grubb is located. Feel free to send her cards there. For some reason google is being tempermental and I can't get the address to come up. But, so many folks here see Dr. Grubb I'm sure one of you can post the hospital address. Please just don't post her last name in the post. Thanks! I MUST go to bed, but I did want to report that she picked up the phone for the first time tonight and called to check in. I felt such joy seeing her phone number pop up on my caller ID. Karen pretty much summed things up...it's a long, hard battle ahead with total unknowns of how to proceed to keep the sepsis from returning, isolating where it is, etc. etc. How quickly the whole thing came on and how sick she got so fast are terrifying. Thank you for all of your support.... Later alligators! Emily

OLL, Thank you for replying. I really did appreciate you posting this thread on behalf of folks like me with Lyme. I was not dismissing it, just needed a bit more info on the publication. As for tabers--you went on and on about Dr. J? However, that wasn't really the question... I was interested specifically in Dr. Yurkovsky and any possible personal experiences working with him. Emily

Michelle, I just logged on to post the update as I wasn't sure who her mom had called. I got a voicemail from her mom. It is the first time Melissa hasn't called me and her mom has instead. I didn't know how to post it either...my heart is so broken and sad for her. She had visitors--three very good friends from Baltimore for the weekend and was so happy it made my heart smile. Then, one day later she is in the hospital again. She is at the Medical University of Ohio where Dr. Grubb is for those of you who may want to send cards or flowers... Please, if you pray, pray hard for her and if you don't, please hold her in your heart with love. Thank you, Emily

I also looked at it... Thank you for the link. I do not know anything about the reputation of this publication??? OLL??? Do you? Also, wondering if anyone knows anything or has had experience with Dr. Yurkovsky??? Thanks, Emily

Karyn, Thanks for responding...I actually have a call in to my Gyn b/c despite having a period in Dec. I've spotted most of the time since then...so having a period didn't do anything! Except make me sick! So far this month I've spotted all but three days! Melissa, I'm glad you chimed in on the mobility question b/c I wondered what your docs would say...mine don't seem to give it issue either, but like you I try to move my legs around in bed! Tanzanite, I am not as immobile as Melissa, but fairly close (I move around the house a bit more than she does, but not a whole lot). I'm usually in bed or in a recliner. But, I can get up and down a bit more to go to the bathroom and I do usually make it to the mailbox each day. But that's it! And, I am still taking the pill. None of my docs have raised issue with this and they know how immobile I am. Like Melissa, I can't really take the risk of being OFF of the pill on top of everything else. Weight-wise I am 'healthy/normal', but have very high cholesterol, so that's not so great. Emily

Thank goodness Cornia is keeping us on our toes! I almost hadn't logged on at all today either! Am soooo glad that I did so that I can wish you a HAPPY BIRTHDAY! Maybe I will sing YOUR famous version of happy birthday????? Hippo Birdie to Ewe Hippo Birdie to Ewe Hippo Birdie dear Melanie! Hippo Birdie to Ewe!!!!!!!!! I think Corina and I singing a duet together would be fantastically FUNNY since we both can't sing! NOW, Melissa on the other hand has a wonderful voice, so it's too bad you didn't get to hear her sing. I am relieved that you were up to celebrating your bday after flying back and forth across the country this week! That's a LOT! I am also grateful you've had a birthday filled with so much love. That's the best, isn't it? Like Melissa, I could go on and on too about how wonderful and fantabulous you are. You are such a blessing in this world and I am so grateful to call you my friend. I hope this year brings you peace, healing and love, Love, Emily

I've had high cholesterol since a very young age (before I got 'sick'). I always had wonderful HDLs which were determined protective. I was very thin, ate well (for a college student! no fast food, etc), and was in good physical shape. At my last appt. we took a cholesterol check (not fasting--so I want to get a fasting one to be sure). My HDLs had dropped to a miserably low level and are no longer protective. I'm only 31--I eat well, am not overweight, but I am not able to exercise. So, I see that many of us are in this bind. I am going to discuss options at my next appt. with my PCP. I am too young to want to go on meds and I don't think he will push it. I would first like to try fish oil or other options. Also, if you are not allergic to bees you can take this stuff (mental block on the name) that is made from bee pollen and my mom's PCP has had a lot of success with it. I had not heard of using Niacin--very interesting. As for statins Helen, the side effects you are having can be from them. Our neighbor had the same thing happen after his heart attack and had all this pain in his arm and weakness. Finally the doctors figured out it was the statin and he changed medication (not sure what to...sorry)... Interestingly, I mentioned my miserable cholesterol to my ANS doc just to make sure it didn't add to anything (my grandfather had multiple strokes, etc) and he said that statins are being studied in MS patients and are being shown to act as anti-inflammatories for these patients. So, as negative as we can all feel about them...I thought this was a very interesting and hopeful use for them. Gayla, that HDL is AMAZING! Thanks Jan for your info. on those studies...I am going to really talk this all over with my doctor at our next visit (assuming I'm not having some other medical crisis at the time, which I usually am ). Honestly, the cholesterol keeps getting put on the backburner b/c of everything else. I also thought that the test for C-Reactive protein was a better predictor of heart attack??? Also, a possible culprit for me could be the birth control pill, but I honestly think that it's genetic--which is what a cardiologist we consulted when I was 22 determined. Hmmmmmmmmmm................tough decisions... Emily

P.S. I look at the chart with all of the 'outside' circles as pointing 'in' to OI--so I suppose the chart would be different for a person with CFS and not OI? I've always found every part of that chart clear as to the contributing factors, of which I have more than half (so wonderful ), but the fact that the CFS circle is bigger--does that just mean that it is a HUGE contributor to OI cases OR does it mean what you are thinking--that all OI patients also have CFS? Who the heck knows! I think it's so muddled b/c with OI you have so many of the symptoms of CFS like fatigue, but I don't have the headaches or sore throats and such. Hmmmm....more confused than ever! At least we can get a laugh out of it! Emily

Julie, Your kind words moved me to tears. I am so grateful to so many people here too and am so grateful you and I have connected (just wish it wasn't because our Sunfish is so sick!). I am incredibly grateful that my post did not upset you! It does all get very confusing. In reading your post I think we are fairly close to saying some of the same things actually! It just gets so muddled. You are right on that Dr. Rowe made the original CFS and ANS connection with that study. It gave the ANS docs a LOT more patients all of the sudden! Also, I get muddled on whether all OI patients have CFS...but I think where we both got mixed up and now are both on the same page is that there are still SOME patients with CFS that DO NOT have OI. Soooo....that is why that article saying ALL patients with CFS have OI seemed a bit off to me. Later alligator! Emily

Pamyla, I have found quite a few canned soups that don't have any allergens in them...if you want to avoid the cooking part. I hardly eat anything that my mom hasn't actually cooked, but it is a bit of a break for her! I have found some of the Health Valley soups to be decent and they don't have anything but the vegetables in them--no additives at all. They now also have an Organic Vegetable one. Also, the Amy's brand has a lentil vegetable one that is really good and has nothing in it that would be an Allergen. If I want protein I will put in a hot dog cut up from one of our local free-range farmers or one of the ones you can buy that have no additives. I know, not the best thing, but it works. These are certainly not as good as homemade! Also, the Imagine brand makes basic soups like broccoli, tomato, and squash all of which I like. I've usually eaten them on the side with some other form of protein like Tuna or somethine. None are like homemade, I'll give you that. My mom just made a huge pot of beef vegetable which we are working our way through right now. Do you know how to do that? Or do you need a recipe? She literally just throws stuff in. Starts with something like shortribs and those make the broth flavorful and the soup meaty. You can use fresh or frozen veggies (or a mix) depending on wha tyou have in the house or what you have the energy for. I'm so spoiled b/c we mostly eat all homemade stuff and all fresh veggies in stuff, but I don't do the cooking and it's not realistic for some of us! We have some super easy recipe for things like split pea and ham, lentil, etc. but I need a bit more specifics of what kind of soups you like. Then, maybe I can send you some recipes? Let me know! We are Jewish, so I eat a LOT of Jewish penicillan...Chicken soup! Which you can use rice noodles with or rice and also make it full of lots of chicken and veggies. Also, I forget all the things you have to avoid. But, you have to watch the boullion cubes and also the chicken stock you buy to put in soups. I will look at what brands we buy that have no gluten if that will help. Later alligator! Emily BTW, I DID disappear for a while and still need to psot under the Plaquenil post! I got really sick on it and herxed??????? My doctor is clueless as to why this happened. I'm a bit frustrated and scared that I can't tolerate anything! So, I am back to 1/2 tablet every third day. Grrrrr.... But on a good note...I reached 100 minos today! Only took me almost a year!

Tessa, How did you figure out you were insensitive to milk proteins to the point that you needed them out of your meds? You must have been really savvy to figure that out! I never thought about it until I saw my current ANS doc and he was the one who said that about 30% of his patients are dairy intolerant (and yes, you are right it is to ALL milk proteins--so you need to avoid whey, casein and lactose) And, taking pills like Tanzanite suggested won't deal with the issue. He said that most are not so sensitive that they can't tolerate milk in their meds, but he suspects that I am one of those folks! Lucky us, right? Do you notice an improvement in your POTS and GI distress when you stay away from milk products? Just curious! Emily

Tessa, I am so grateful I happened to see your post and you might be able to get the medicine you need. I REALLY trust my doctor to choose a reputable pharmacy and he uses this one for his highly allergic patients. Megan, et. al., I don't think there are probably enough people out there who are THAT allergic to lactose or forms of it (like you'll see lactate this and lactate that in pills) to make it worth the companies creating meds without the lactose. For those that are though, it is a HUGE expense, and also a huge challenge if the meds are still under patent and can't be compounded. I think it's just a useful binding agent. When I called my local pharmacy that does compounding they were like you want this medication WITHOUT LACTOSE????? As if I was the first person who ever made such a crazy request. The dude had to go searching forever for a formula to make the med! Lesson learned--go with the experienced pharmacy that Tessa is using! Emily

Pooh, Still sending you healing thoughts and energy. Am very worried about how you are managing... Love, Emily

Amy! A BIG HUGE YIPPEE!! Thank you so much for updating us! As soon as you are able I can't wait to find out the name and sex of the baby! And of course, an update that baby and mom are HEALTHY and doing well! So glad you are doing well with the pregnancy. Emily