Roselover

Wow Briarrose - what an interesting question! And BTW - nice to see ya! I'm around Dinet off and on... often just reading, but today my little brain is awake and I feel like talking so I thought I'd answer some posts! And there you were!!! I think you've posed a very interesting question and I wonder what others think. You know, I am a person of faith in God and before illness... my emotions would often try to take over, but I learned a lot about "leading my heart" rather than "my heart leading me" and about how my faith and spiritual beliefs could help me balance that. And, I have the family training and genetics to obsees and worry - though it's pretty mild in me ... at least compared to family members LOL! And I had times that I had to process worry, and I learned how NOT to let little things affect me. Like I watch family members (I'm talking extended family) get upset about things... and I think - it's just not worth it! I don't need the stress of worrying about that.... so in that way I might be viewed by my family as "not feeling" as much as they do. BUT... that's all BEFORE illness... This year my adrenaline rushes have increased in severity. They don't happen often, but when they do it's wild! I had one night that I laid in bed for hours... with adrenaline rushing for no reason. My heart pounded... I was in a cold sweat...I had butterflies in my stomach like something was wrong or I was worried or anxious about something. And I'd start to try to evaluate the worry as if it was a real worry - but then I kept remembering... I wasn't worried! I wasn't scared! I wasn't anxious about anything! I just had the physcial symptoms as if I was! I find that very wierd! And for me... I still haven't been able to apply any kind of emotional or thinking control over it because it's purely physical and hits unexpectedly. I do now take one small dose of Zanax when it is purely physical because it seems to stop whatever is happening in my body. Just this past weekend though... I had some serious emotional events - and the physical symptoms went crazy!!! It was several days of several events througout the day. Most of them, as I applied my "worry control" I'd learned before illness... my body would follow.... very slowly... but if I was paitent it would slow down. But one time it hit so hard - even controlling the emotions and worry didn't stop the physical. I finally got to a point where my heart and mind were calm and peaceful - but my body was acting just the opposite. That time I used a Zanax to slow the body down to match my true mindset. That's my experience. You seem to be saying that if you allow a situation to lead you into adrenaline release - then it takes over. (like I expereinced once this weekend) So you have learned to control the situation so that you don't enter that extra-adrenaline stage. I suppose, the important thing is that you answer your own question. Have you shut off all your emotions so that you can control your physcial body? If you have, you have to weight the benefits with the costs, and make sure you're not losing out on other things that you may actually need in life. (for example, I could emotionally shut out my kids and not have a weekend like last weekend! But then I'd lose out on those relationships. But there are other things I do choose to cut out cause, to be honest, the physcial price is just not worth it) It's a very strange balancing act I think. Other people can not understand what the emotions cost us physcially!!!! And yet... there are times we need to choose to connect emotionally and pay the physical consequences. Hope this helps a little. I'm so wordy because I just went through a hard weekend and I could relate to your question. I think a year ago I wouldn't have even understood what you were asking. Luv ya!!!! Melanie

Very interesting article - but through my college and post grad education, I always scrutinze research, reports and conclusions. For example: "To develop the guideline, the authors analyzed all available scientific studies on the topic." Question: How many scientific studies were there to anaylize? and how many were "reliable" studies? It also does not address whether it is talking about people whose neruo symptoms came on at the onset of lyme and were consequently treated right away with the standard treatment - OR - if it is including those who have lived with Lyme in their bodies for years and years before it was treated. Seems to me there could be quite a difference in this. And what about this statement: "This guideline states that long-term use of antibiotics does not improve the outcome in people with chronic symptoms after customary treatment of Lyme disease. Specifically, further treatment does not improve overall health quality of life, memory, or depression. " That makes complete sense and I think Morgan stated that nureo cells don't regenerate well... but what if, after initial treatment, the symptoms are getting worse? It seems this article is saying that we can't expect to regain the damage caused by the lyme bacteria, but it doesn't address the question of those in whom the damage is increasing. (and we have several members on our forum in this condition) I am not asking Doctorguest to respond to my questions about the article - I'm just trying to show how even highly thought through medical guidlines often ignore the small handful of people for whom the guidelines do not apply! It's so good for us all to read these newsest updates and take them carefully into consideration. but also to think through what they do not address and to be careful not to apply them in incorrect ways. One thing, though, that Doctorguest or someone could answer for me is this: What does it mean to have a "guideline" come out from a specific medical academy like this statement? (BTW ... I didn't read this to be a study... it's a statement - with a reveiw of studies.) One of my fears is that a "guideline" means that they feel there isn't a need for further study. I have other fears about what a "guideline" means... but don't want to jump to conclusions since I really don't know what that means to the medical world! Just some extra things to ponder..... ~Roselover

Praying for you too Morgan.... ~Melanie

Oh Pat, I'm sorry to hear this... I wanted to give you a big hug when I read it. So it's not menopause? It sounds like you've had that checked... but it could be perimenopause... our doctors seem to just wait until the hormones have stopped. However, the period before that they fluctuate so much it can be just as hard - sometimes harder for people. You might read up on perimenopause... there are some things to know and understand and even some helpful - non prescrption things to do. If you want... you can send me a PM and I give you a couple of ides. But maybe that's not it at all... I will hope and pray the St. John's Wort gives you a little relief... do you have a spiritual life? If so, you can PM me and I'll share a little with you about how I deal with times of depression in those ways too. I hate anti-depressants too.... they either make me sleep all day or make me feel totally numb. I will keep you in my prayers Pat... please let us know how you get along! ~Melanie

UPDATE: Hi everyone... just a very quick update for you all. Melissa did not go home today as planned. Instead, she is having a j-tube put in tomorrow (Tues) and so she has been transferred back to the hospital today for this surgery. It is hard to face surgery and the pain following the placement of the tube (pretty big abdominal incision), but this is in many ways, a relief for Melissa who has been very concerned about how often her current tube becomes clogged. The new tube is placed differently and larger so less likely to get clogged. The care center decided that she must have it replaced before going home or she would be unable to get meds. This won't solve the sepsis issues, however, it is something Melissa was hoping for and it has just come about very quickly and smoothly. Though she wants desperately to be home... this really is the easiest way and best time for this procedure to be done. Please pray for her tomorrow during surgery (time unknown) and the couple of days of recovery before she really gets to go home. And we may not hear anything for a couple of days... so no one panic... :-) Just keep our Sunfish in your prayers! ~Melanie

Oh my goodness Ernie!!! I just read your story to my family and they are appalled... of course my teenage son is outraged!!! So so glad to see you back "home" here at Dinet and at your own home too! ~Melanie

What was Zelnorm pulled for? I don't take it, but was curious....

Ernie!!!! I think that's the longest post I've seen you post LOL!!! Yay!!! So glad you are home... I know it doens't mean everything's fixed... but so relieved to know where you are and how you are... I worried for so long! Keep us updated as you can! ((BIG HUG)) ~Melanie

Thank you Karen for visiting her and for this update. The first thing I wanted to do when I heard she was in the hospital was jump back on the airplane to see her.... but from the West Coast that's a little impractical! Sounds like it's gonna be a long journey.... think I'll go ahead and send something to the hospital. LOVE YOU MELISSA! ~Melanie

Yay Flop! So nice to see you post.... now rest well and take good care of yourself! ~Melanie

In case someone reads all these messaged to Melissa, I wanted to post too tell you I am crying for you and the painful journey you are on. But even as we grieve, we know we have a hope that will not be disappointed. I am praying for you Beautiful! Poohbear, I read the words to that song.... couldn't get Gilligan's Island out of my mind for hours LOL! I bet Melissa would love to hear you sing it! Big hug dear sweet Melissa! ~Melanie

Great advice Melissa! Thank you so much Morgan... I am SOOOOOOOO Relieved!!! I have thought of Ernie several times a day lately... been getting more and more worried.... Not that her situation isn't worrying... but I'd rather know what's going on than be in the dark. Poor thing... give her our love and let her know she's missed. I do think the health care in Canada is quite different... but maybe Melissa's input will be helpful. Tell her I'm praying for her. ~Melanie

Willows husband gave me permission to use some of his photos for my painting. I've done lots of watercolor, but have just started to learn to do pen and ink and watercolor. I thought Willow's Oscar would be the perfect starting place. So here he is... The painting is an ACEO (Art Cards Editions and Originals) which measure 2.5" x 3.5" - just like a trading card. If you don't know who Oscar is... he is the owl Willows adopted to support Children's Hospice! I think she would secretly like to take him home with her instead of leaving him at the zoo ~Melanie

Welcome Helane! Very nice to have you here. If you use the search function at the top of the page I think you might find lots of answers to your questions. I know it was very helpful to me when I was first diagnosed! I think the term Postural Hypotension would refer to a sudden drop in Blood Pressure when standing. Postural Orthostatic Tachycardia refers to an abnormal increase in heart rate upon standing. Many of us have both, some have one some the other. I'm very curious where you imigrated from? Your english is great! We have many members from around the world here so you should feel very at home! Glad you found us! ~Roselover

Very interesting info Bronwyn! See you have some things you can teach us too! I know quite a few here have tried IVIG... haven't pursued that myself though. And yes! It was Vegemite my best friend ate... not marmite.... but my poor memory wouldn't let me pull that word up... it's been a while since High School LOL! ~Melanie

Well, Luckycharm... I don't know..... LOL! It is defineately an aquired taste. and I don't know too many teenagers in the US who eat it on toast for breakfast! Hee hee.. Do you eat it regularly? It's pretty hard to find here! Let's see, what else it typical Australian... Oh, Bronwyn... how is the drought? Still really bad? Fires? Had any rain? I have a freind on another forum who was asking us to pray for Australia and told me about all the fires etc... haven't heard if there has been any relief! Dayna, and all... I've been very interested in the autoimmune possibility too. Early on in trying to figure all this out I had an ANA test done which came back very high and abnormal. I was sent to a rheumatologist that told me I did NOT have Lupus and therefore concluded it was a false positive. This doesn't really make sense to me... just because it's not Lupus doesn't mean an abnormal ANA isn't pointing to some other autoimmune issue. I had the test for the antibodies that Sunfish mentioned... they did it for me at Vanderbilt and I don't have that one... but like she said... there may be many others they just have not identifed yet. I've wondered about trying a short trial of prednisone... but none of the dysautonimia doctors I've met with seem to take much interest in my thoughts about possible autoimmune...??? Maybe because they just don't know enought about it yet. ~Melanie

Hi Bronwyn, I wanted to add my "Hello" wave too. I read the forum a lot - and answer posts sometimes.... LOL! My very best friend through Jr Hi, Sr Hi and College was born in Adelaide! In fact I think her family still lives there... I met her cousin once! She was a pretty typical US teenager except she ate marmite on her toast! LOL Nice to meet you and hear a bit of your story. ~Melanie

We'd love to see pictures! Glad you had such a great time! ~Roselover

Oh... you dear dear friends! Your messages to me are as precious as anything I've been given today - thank you!!! I LOVE you voice EM ... LOL!!! I think it sounds beautiful! And Melissa, thank you for spending your precious energy on me! Katherine, and Dionna... thank you for chimming in too! I think we could have a beatufil potsy choir - hee hee! ~Melanie

I just took two flights this week... yes, I just keep focusing on breathing regular and deep. Oxygen could be a good option if you're badly bothered! Tearose... I had a huge problem this time with the fluids issue! BEACAUSE... they don't let you take any fluids through security! SO... if you're traveling... have your doctor write a presecription saying that you medically need the fluids!! ~Roselover

I too had a hard time with Imitrex. For me, Frova has been a much better choice. It takes out my migraine very quickly! Of course, what works for one, may not work for another, but it has been helpful for me. (It is like Imitrex where you take it at the onset of a migraine... not a preventative) ~Roselover

Big Big SMILE here!!!! Thank you SO much Corina for remembering me!!!! Thank you everyone for your warm thoughts. For some funny reason, I was looking forward to this birthday... and it's been a great day so far! Breakfast in bed, fun presents from friends and my kids and even a bouquet of spring flowers from a friend who is out of town! (I need spring really badly... how did she know?) Hope you all have a wonderful day today too!!! (((Hugs))) ~Melanie

I have major congitive problems. My family just laughs with me.... others don't notice because I hide it well... but it drives me NUTS! I'm scared because it's gotten so much worse... but the brain is a resilient thing... I hope it will recover. I force myself to do things that are hard. I play puzzle games and force myself to balance my own little checkbook (not the big family one) and I keep pushing hoping my brain - whatever it has lost - will continue to try to reforge new pathways to keep functioning. I'm considering a OT (occupational therapist) to give me brain exercises to try to keep from losing as much as possible and to keep renewing those pathways. ~roselover

Yes, I am very lucky to have such a caring daughter. She also cuts my hair so that it's fast to wash and quick to dry... often don't even use a hair dryer.. There is no way I could drive after a little exercise. You know what else I did? I bought a hand crochet hat that I wear when I need to be out of the house, but I don't have energy two wash my hair! Or other times I just throw on a baseball cap! And I can't remember who mentioned this... but yes, I am thinking of asking mangement to put a sign or even write with a sharpie - for handicapped use only... ~Roselover

OMGosh Dayna!!! I've never posted this... but so glad you did!!! Vicodin has a bad rap these days..... BUT.... ME TOO!!!!!!!! And no, it's not all narcotics.... it doens't happen if I take codeine... in fact codeind does horrible things to my gasteoparessis! The GI doc at Mayo told me to never take narcotics because they slow the who system down more. But for some strange reason... Vicodin actualy takes away my nausea, and like you said - my Pots disappears and my brain wakes up and I have energy..... I really wish I understood it! I too only take an average of one does a week, but I am so tempted at times to take it to just feel normal! And I've wondered how much I could take without becoming addicted. I have also had the opposite effect from stimulants... they mess me up so bad. They make my POTS worse.... I am very curious about this and find it interesting to know someone else has found the same thing... I think it tells us something about what is happening in our nervous systems.... but WHAT??? I wish I understood! ~Melanie