DancingLight

Tearose, It is certainly NOT unreasonable to want more out of life!!! To feel more like 'yourself' again. I have noticed how 'different' you have been in your posts over the past year or so. And I know your health is weighing you down. Of course you want to feel better! That is certainly not too much to ask. However, I have to agree with Katherine. She pretty much took the words right out of my mouth and couldn't have said it better. I had read your post earlier but hadn't 'formulated my thoughts' yet. I think that if you are going to go to "Oz"--which is a traditional medical facility, they are going to want you to use medications for your illness and to help you. If you do not want to use any medications, Oz may be a disappointment, as you mentioned. In their own way vitamins and minerals are medications. Having surgery and using the anesthesia and meds associated with that is using medication. So, I agree that if you want to improve your quality of life and you want to do it in Oz...then you may need to compromise on the medication issue. I am not sure I am able to understand your reasoning not to take any medications if they would improve your quality of life? I know you are vulnerable right now, and this post is certainly not intended to make you feel attacked or minimized. I just want to make sure that you go to Oz and don't leave disappointed. Traditional medicine operates using meds in addition to other treatments. So I guess the question is: Is Oz the right place to go for YOU? Are you willing to compromise on the med issue? Hope this helps. You DESERVE to feel better, feel more like yourself. We all do. That is what we want here on earth. Emily

Corey, We have a free clinic in town for people without insurance and they take donations of things such as syringes and such. Is there anything of that sort in your area that might take them as a donation? I hate throwing stuff away too. Especially once the pill bottles are open you can't donate them, but the syringes and heparin are sealed so you may be able to donate.... Good luck! Emily

UPDATE! Melissa called last night around 10 and I cannot tell you how relieved I was to hear her voice! I actually got a good night's sleep after that! She has still had fevers, but they haven't been as high. Also, they started a new abx on Thursday and are hoping that is working. She has finally started to get some sleep b/c the fevers are not has bad. It has just been this way for a couple of days, so she's not sure it will stick yet! She felt more hopeful last night though. Also she has had a lot of visitors this weekend/end of week so that is wearing her out, but soooo nice of folks! So, that's the latest scoop. It doesn't look like, at this point, that they will be transferring her. Later Alligators... Em

I still pee...just MUCH less frequently. As the DDAVP wears off though I have to pee a lot! It's annoying. Anyways, as for the full head, etc. only sometimes when I get fluids, but it wears off. As for having my blood monitored...I always have monthly-6 week appts. with my PCP and always have bloodwork done--to monitor sodium as well as many other things I have going on. The only time I couldn't keep my sodium levels up was when I was taking DDAVP every 8 hours instead of every 12. I am not sure this is answering your question? Emily

Pooh, No transfer yet and don't know if it will happen at all. The doctors are all stumped. She's not had much change, if any, in status or how she is feeling. I didn't hear from her yesterday or today yet...which is unusual... Will udate as soon as I know anything! Em

I take .1 mg of DDAVP every 12 hours--and make sure one dose is close to bedtime so I can get some sleep. I'm like Sophia! I don't keep track of stuff anymore...I just kind of judge what I need. But my ANS doc still recommends 2L at least of fluids a day and I am sure I drink at least this much. Probably b/w 2-3L a day. The endo said to stay at about 2L, but he wasn't too on the ball. My ANS doc also still lets me get IV fluids even with the DDAVP in a crisis situation. 2L over 2 hours... Hope this helps a wee bit (no pun intended!) Emily

I'm sorry for those of you worriers out there that I haven't put in an update sooner. I was sort of waiting for more news of sorts... I think this is update number 4, but her address from the 'snail mail' post is still applicable. I don't know much more than I have gotten through short voicemails and a couple of quick conversations in between, what she calls her journeys into 'neverland' when she spikes fevers several times a day. She is not in ICU right now, but actually, the nurse this morning really felt that she should not have been moved out of ICU. On top of the fungal infection in her body she has THREE different types of bacteria causing sepsis. So, she is on anti-fungals and antibiotics. So far, she has not had any relief in symptoms and is still about the same as when I last wrote (i.e. one sick cookie). She is at a small hospital in Toledo and they were hoping to transfer her to a larger medical center, either University Hospitals in Cleveland or U of Michigan. But, as of now no answers on this yet. The infection seems to be coming from her small intestine and somehow seeping into her blood, but the doctors are stumped on how this is happening and thus were hoping to transfer her. However, so far calls to other hospitals ahve stumped doctors there also. Today she was supposed to have her liver scanned and other such tests, but I haven't heard the latest... It's all very scary and I feel so awful that she is sooo miserable. As for snail mail, even if she does transfer hospitals (which at this point is questionable) she will STILL GET YOUR MAIL b/c it will get passed on to her home, so feel free to send it. She will LOVE, LOVE, LOVE it. Thank you for continuing to keep our Sunfish in your thoughts and prayers. I'm reading her your notes. I also really appreciate your support and understanding of me through this. I am sorry I am not able to be there for more of you right now. Later alligators! Emily P.S. Unless there are major changes (i.e. a move to another hospital, etc.) I will just post updates under this thread b/c otherwise I feel like I am maybe overwhelming the board with new topics!) So, check back here! Thanks.

Dr. Rowe is in charge of the Chronic Fatigue Clinic at Hopkins, but that often encompasses Dysautonomias. He did the groundbreaking study that distinguished b/w people with just CFS and those with CFS and NMH, by using the tilt test to show that there were two separate groups. Those with CFS and NMH needed to be treated for their NMH symptoms. He is mostly a researcher, so as far as I know he is not accepting any new patients. However, I don't know if he would see your daughter b/c she had seen him before? Emily

Jennifer, What sort of GI issues are you seeking treatment for? Motility? Gastroparesis? Melissa/Sunfish sees Dr. Gregory Cooper at University Hospitals in Cleveland and has had a really good experience with him. Hope this helps! Emily

Hello all! Here's the latest: Just heard from Melissa a few miinutes ago. I have read almost all of your posts to her over vm and she really enjoys that! She sounded MUCH better today, which was a relief. Still, she will remain in ICU and will be in the hospital for AT LEAST another week. She gave me permission to post the address of the hospital for those of you who have asked me about sending cards (previously she had been too out of it for me to even ask her). I hope I have the right address (Maxine are you reading this? She said it was Toledo Hospital, and this is the address I found on google). Hope it's right! Since her last name is already visible on the site, as she is a moderator, I think it is okay to post it this way. Although she is in ICU, she is in the secondary ICU, so has her own roomy room and she CAN have flowers and such (which she loves). She loves mail too...so here's the address. Melissa Mambort TOLEDO HOSPITAL 2142 NORTH COVE BOULEVARD TOLEDO, OH 43606 I'll continue to keep you posted as I am able and as I hear news. She was going to get a hair wash with one of those shower cap thingies today. They are monitoring her vitals closely, she's still having fevers, etc... Many thanks for all of your prayers and support!!!!!! I couldn't sleep at all last night I was soooo worried about her. It was a relief to hear her sound like 'melissa' on the phone today. She's still got a LONG road ahead though... Love, Em

THANKS NINA! I didn't mean to create such a project! But, now I'm thinking I probably typed it correctly and it changed it! That wasn't very nice, now was it? Thanks for fixing it! '2' will do just fine! Emily

Oh poop, I really DO know my roman numerals!!!! Could you fix it up for me Nina? So the title says II instead of Ii??? Duh! Thanks! Em

Hello all! I am reading your messages in bits and pieces to Melissa over her vm... Just wanted to let you know that they have a CAUSE figured out for her crazy symptoms....a fungal/yeast infection in the blood stream. I guess this is fairly rare, but she has had a ton of abx lately...don't knwo if that has contributed or not. Sooooooooooo, now they are pumping into her the right stuff to combat this infection. She's still in ICU and feeling like crappola, but we do hope this will help her to start feeling better soon. Later alligators! And thanks for all of your kind words (to both of us!) Love, Emily

Patti, Melissa is in Toledo.... Emily

P.P.S. If you want to write Melissa a note that you don't feel comfortable posting on the board...and you feel comfortable emailing it to me to pass on to her mom to read to her...that would work too...if you don't have my email, just hit the 'email' button by my name and voila! Don't PM me as my box is always full! Thanks for your messages! I'll let her know... Goodnight, Em

P.S. Tearose...why did you ask about the gammaglobulin treatment???? Melissa has had IVIG treatments in July of this year, but just two before she had to stop them...

Thank you to all of you who have been asking about Melissa. I am sorry I have not kept you up to date sooner. She and I have only been able to communicate a bit through voicemail (as we are both asleep at opposite times, it seems) mostly. Also, things have been very up in the air, and I kept waiting to have 'more information' before I posted an update... Tonight she called and we got to talk for just a few very short minutes which used up all of her energy. THE UPDATE: Things have taken a big downturn. Just a couple of days ago they were hoping to release her, as the fevers had settled, the headaches had settled and she was able to cath herself again. Tonight she called to tell me that she is in the ICU. The headaches have returned with a vengeance, the fevers are sudden and extreme and quelled by liquid motrin, they are accompanied by sweats and horrific chills. Her vitals are all over the map and they are unable to regulate them. Hence the ICU. And Oxygen to help her breathe when her BP and HR are all over the map. Still absolutely no clue what is going on. It is not sepsis this time and they have not found evidence of infection. It's all very scary. She's on morphine for the pain, and also, despite pumping in TONS of fluids, she is very 'dry' so her voice is scratchy and b/c she is tired, her voice is weak, so I have had some trouble hearing her and catching the details but she's too tired for me to bug her to repeat them! PLEASE: If you pray, please pray for her. She is a very spiritual woman. If you don't pray, hold her in healing light. She is having trouble keeping up and cleaning her voicemail, but I will make every effort to either 1. Read all of your posts to her over the phone, or 2. Email them to her mom to print and take in to read to her. THANK YOU!!!!! Emily

Linda, thanks for starting this post...I haven't been on DINET for days and happened to catch your post AND get a call from Melissa tonight...so will start a new topic with the update. She's not a sunnyfish right now.... Em

sophia and corina... not really relevant to this thread, but my doc appt. went great (how often can we say that???). my PCP has really gotten on the ball and on board with the lyme and ANS stuff. it's not that he wasn't on board before, but he's been 100% better about things lately. he's sticking with me...and he's caught sometimes in a tough position b/c we are trying to find a way to coordinate the lyme care and the ANS care. he's humble and that's a beautiful thing in a doctor--he's been so open to this new path and not sabotaging it. thanks for asking and thinking of me! so, i didn't need to vent!!! yippee! em

Michele, Happy Birthday!!!!! Sounds like a fascinating combination of interests! If you are up to it could you tell me what courses you teach or your areas of research interest??? I would love to hear how you combine those disciplines... Sounds like 40 is off to a good start!!!! Like I said, my parents are both sociologists, and despite swearing that I would not go into a social science...surprise, surprise...I majored in psychology with a concentration in medical humanties and few pre-med courses thrown into the mix! I've never been able to 'use' my degree beyond navigating the healthcare system as a patient...but it has helped me enormously and I am grateful for it. Whew! Tenure must feel so good!!!!!!!! Emily

That is WONDERFUL news!!! Both of my parents are university profs, so that is the only life I know...and I know how hard it is nowadays to get tenure!!!!!!! What do you teach? My parents are both Sociologists... It is a big relief to get tenure and be srue that you are at one place to stay now, and not have to worry about the insecurity of starting over again somewhere else.... Emily

Gayla, Definitely see if you can get loaded with fluid BEFORE you go in for surgery and get an early morning surgery so you don't go in already dehydrated. You may need extra fluids afterwards as well as make sure to get your electrolytes checked before you leave the hospital...as mine went low and they didn't check and I ended up going back by ambulance... I would definitely do a search for gallbladder as a topic post b/c there have been so many other good tips that I can't think of right now!!!!!! I found the things they put on your legs post-surgery that velcro on and pump like stockings really helpful to keep me from passing out! I do hope you will feel better after surgery... Emily

This is a popular topic on the board as salt-loading is a common thing that people with POTS do to raise their BP... Just recently there was a post called 'What are your favorite Salty foods" and there have been numerous other posts on the topic. I would highly recommend doing a 'TOPIC' search for the words 'Salt' and 'Salty' for foods. You can also do search for 'salt tablets' and 'thermotabs' as a keyword search if you would like to learn more about using these to supplement. Hope this helps! You will hopefully find lots of salty foods to stock up on! Happy snacking... Emily

Nina, I am glad that Wilbur is bringing you so much joy!!!! And us too! The pics are great. Gosh, are you getting me to like cats???????? Em

Yes, you must wear gloves when chopping hot peppers!!!! I tried Capsacin (sp?) once to relieve pain...you know the topical stuff and whoops, I reacted big time to it. It was on my back and I'm screaming MOM!!!!! get this off of me NOW. It was beat red and burning up. Needless to say, I went back to the old Ben Gay! Em