DancingLight

Amy, Thank you for 'reporting back'. I was just wondering how the LLMD diagnosed you? Did you already have positive bloodwork that he based the diagnosis on. I hope you will be able to tolerate the abx...and not herx too badly. I agree also with DizzyDame--so many people with Lyme have 'resurrection stories'--so don't give up hope! But, I know it's hard! Emily

Hello! I am sorry you are struggling so. This topic has come up before...Here is one of the links (and a link within this link to MORE books!) Hope you find some of the titles helpful! http://dinet.ipbhost.com/index.php?showtopic=4654&hl= Emily P.S. Nina or other 'volunteers'--how do I get the topic thread that I found to be underlined??? So she can just click on it???? A confuzzed Emily!

Oh Pooh, I do not even have words for you...I just want you to know how much I've been thinking about you. I will be so nervous FOR you with the surgery (you know how I worry!)... You are just going through sooooo much. All I can say is that I am so sorry, and I am here supporting you. Much love, Emily

GayleP! How nice to see your name pop up! How are YOU? Thank you for posting on Pooh's behalf. I am so sorry she is going through so much. I have it on my 'to do' list to email her my thoughts--but you know how that goes! So, please pass on to her how much I am holding her in my thoughts. As for the hysterectomy question, I am glad to see that Sophia, Morgan and others chimed in as I have NO idea on this topic. However, I did want to make sure that you had done a search b/c I know that when Sophia was making the decision and so many other folks over the past couple of years, the topic has been discussed in great detail--and perhaps some of this might help Pooh???? There are several folks who've had them, folks who've decided against it, and then folks like Sophia who made the tough decision to finally have a partial one. Are you or someone else able to post updates on Pooh so that we can know how she is holding up and send her our good thoughts???? Emily

Dawn, Bummer that it didn't come up more in a search! I remember for a while (a few years ago) it seemed to be one of the drugs Dr. Grubb was prescribing a LOT for the fatigue issues. I tried it and was actually in a study to see if it worked for CFS patients. I didn't really have success with it....BUT your doctor was right that it is often used for the fatigue issue and I do know it has been helpful to others on this board. You have a lot of options if Provigil doesn't work for you. A lot of folks take the drugs often used to treat ADHD (like Concerta, etc) with success. Best! Emily P.S. If I don't just write this NOW I never will! I have been meaning to email you but I'll just write it here (then others can hear how talented your family is too! Anyways, the quilts that you and your family made for the auction? I got the purple butterfly one. It is GORGEOUS. Since getting it I have gotten several compliments on it. Our cleaning person was so into it and how well made it was, how pretty it was, etc. It matches our living room perfectly, which is themed completely around a quilt my grandmother made in her quilting group. Also, I'm all about butterflies! Thank you for working so hard on those and contributing to the auction with such generosity. I can't imagine how long each of those took to make--just choosing matching fabrics seems exhausting!

I see some of you are checking in for an update! So here goes real quick before I head for a nap! Melissa called just for a couple of minutes yesterday to give me an update. She literally calls and says: "I called to give you an update." It's so cute. Anyways, she IS home and in her own bed. I think she is glad to be home. But, it's going to be a real challenge to manage doing all the meds, TPN, etc. on her own. Even toileting and such are an incredible challenge. They did call in a home care nurse the day she got home b/c she was too sick to do stuff on her own at all. She said the transport people were awesome (and one of the women even has NCS (under control of course! she wasn't transporting Melissa with risk of passing out!). Anyways, Melissa has a G and a J tube and yesterday when she called she was in AWFUL pain. Her whole abdomen was sore and every move hurt. She was going to get some pain meds and maybe even some morphine. Her throat is feeling MUCH better without the nose tube, so she should be back to chattering soon! Okay, later alligators! That's the latest news feed I have. I don't expect to hear much from her over the next few days as I think she will be exhausted just trying to manage at home and recover from the transport, the tube insertions, etc. Poor Czar, her kitty, wants to keep her company, but he likes to lie on her belly!!!!!!! He must be so confused! Emily P.S. If you have emailed me personally about Melissa and I haven't gotten back to you, I am sorry. I am doing my best to keep up. Please bear with me, as I am quite compromised myself physically! Thanks! You've all been AMAZING! And it's been fun to get to know so many more of you. P.S.S. Lois...how are you? I see you popping up here and there and have missed you... Emily

Amy, I hope I am not too late with this post... I hope the LLMD will be what you are hoping for. You asked me what to expect, what my appt was like. In a nutshell: My appt was over three hours long, mostly focused on my history of EXPOSURE to ticks (might want to think about this before you go, b/c I was unprepared--like where you've lived, exposure to horses, etc, etc). Also, we discussed my current symptoms and he did a physical exam--a bit different than just typical one, as he was looking for certain markers in hearing, balance, tender points, etc. He took a history of medical diagnoses, tests, etc. so far. He also did EXTENSIVE blood work. This is a huge key along with a very detailed clinical history. He sent my bloodwork to three separate labs for lyme workups, as well as did an incredible amount of bloodwork to rule out ANY conditions that could be mimicing the lyme. Careful and Thorough. He would not tell me his thoughts on whether or not I might have Lyme until the bloodwork came back. Hope this helps....and that the LLMD is a good one. It is so hard to travel so far and not know! Report back when you can. Emily

Thank you Kristen! I am sooo nervous about Melissa managing at home....when she told me I was like, 'you're going home?' and she laughed and said 'are you freaked out?' I hope her throat will heal fairly quickly after the NJ tube is removed, however, just removing seems like it will cause so much irritation again. She will be so wiped out from all of this round of procedures and being transported home... Sooo, my computer is back from the 'fix it shop!' Yeah! But, now, I'm waaaaay behind on everything. Ah, you'll have this, as my grandmother would say. Em

Lauren, Thanks for the update! I had just been getting ready to revive your other post and check in...I am glad you have figured out some options! Yeah! I feel very relieved. I was so worried about you. Love, Em

I wanted to post an update before my computer gets sent away AGAIN to the fix-it shop. Grrrrrrr....thank goodness the fix-it shop for me is a friend of my dad's and he just helps out whenever I need. Last night, I was sick as a dog, listening to my iPod and it froze on me too! Am I jinxed???? Poop. Anyways, this isn't about me....it's may latest update on Melissa... I don't know too much. She woke up on Friday with her throat a bit better, and was able to call and leave me a voice message. She's trying the itty-bitty amounts of feeding. Not tolerating them so hot. She's off of the antibiotics (SCARY!)--as she calls it...entering unchartered territory again. Then, on Saturday she woke up with her throat really, really miserable, so can't talk again!!!! Yikes! The good news: they figured out a way to put ALL of her meds through her IV lines and VOILA! they are working better than they have in months or even years. She sat up for a teeny bit yesterday for the first time in a long time. That's really all I know right now!!!!!! Today is FIVE weeks in l'hopital....Ugh. Later alligators! Love, Em

Linda!!! Happy Birthday to you! Happy birthday to you! Happy Birthday dear Linda! Happy Birthday to you! Any plans for your day (other than surviving the POTS junk of the day?)? I hope 25 brings you a year of hope and big changes in health... Don't go having a quarter-life crisis on us, k???? Just remember you're younger than most of us here! Thank you for always having such a loving heart and generous spirit... Emily

My long and short of it would be to see a geneticist to be sure. Many folks on this board have EDS--Hypermobility type. It has been connected to POTS. I only know one other member who has Marfan's. You can be hypermobile and NOT have EDS. For hypermobility type of EDS there are not biopsies--it is a clinical diagnosis. Dr. Grubb often diagnosis his patients on site with EDS and POTS. I think he is wonderful, but with me, he mis-disagnosed me and I worry that he overdiagnoses the disorder. He is a cardiologist and did not do a thorough Beighton exam (score determines EDS). I went to see a geneticist as well as another ANS specialist who has written papers on the link b/w CFS and joint hypermobility. While I have a couple of characteristics of EDS, I don't have enough to say it is the cause of my POTS (as Dr. Grubb said) or to say that I have EDS. I don't know much about Marfan's syndrome....but a search on webmd or such might help you out. Or, just type it in on google. Emily

Cold feet and hands are a big problem for lots of folks. If you do a search for 'cold feet' I bet you'll find a plethora of remedies! I'm the cosysole advocate here. I love them. www.cosysoles.com Couldn't do without them! They are expensive, but in the long run, more environmental and also probably cheaper than using lots of thermacares. Although, I DO love thermacares for my neck and menstrual pain. Em

Karen, I hope she will be able to talk soon! I loved everyone's comments on her talking! I got to talk to her Wednesday too, and am so glad that I did b/c it had been a while before that and will be a while again. Em

Thanks Pooh! I know you 'get' me so well and my situation! I appreciate it, as I know you are having it rough enough yourself! Pam! You are the one who is on Plaquenil. I was thinking it was you, but it didn't come up when I did the search and I was mental-blocking on which of the fellow Lymies on this board had taken it. THANK YOU! I am so grateful you saw my post. I'm so dazed and confused all the time anyways! Maybe I will lower my Klonopin dose if I can so I don't have so many drugs that make me tired. We do not know for sure or not if I have babesia, but I show that sort of pattern in terms of how sick I am. So, we added in Malarone at a pediatric dose--when I tried to up that I got really sick and had to back off again. As for the Mino, I started at 50 mg 1x a week (after starting with doxy and going up to fast and ending up in the ER, stopping abx for 3 months, etc. etc. We learned our lesson the hard way!). I herxed even at this amount. Each increase has been so hard--just going from once a week to once every 6 days to once every 5 days, etc. Now I am at one tablet MWF and would like to add one in on Sundays, but would like to wait until I start the Plaquenil so that I don't get my system too confused. So, my understanding is that you took this drug, not for pain, but for babesia? Was the fatigue part of the babesia dying off? That is one thing I amwondering, since it does affect babesia and the Lyme cycle--did it make your herxes worse or better? What dose did you start at? And how quickly did you ramp up? I am glad you shared your experience.....ssssoooooooooooooo grateful for this board b/c it helps me to gage things better now. I did have a baseline eye exam before starting the drug. The funniest part of the whole thing was that I haven't worn my glasses for 2 years (ever since my gallbladder surgery) since I've been so sick. And then, when I did try to put them on I felt weird with them. Turns out, my eyes are 20/20 without them and I don't need them! Sooo weird. I wish the rest of my body would work like my teeth and eyes do! My doctor insists on eye exams every 6 months to monitor. So, he is very cautious. If I am only taking one dose per day...would you take it in the eve with dinner b/c of the fatigue? Or it just makes you tired all of the time? Sleep would be welcome in my world! THANK YOU!!! sorry for all of the questions. So glad that you saw my post! Emily

I am getting ready to start Plaquenil as part of my Lyme treatment. Both my ANS doctor and LLMD agree that this is the best choice for a med for neck pain right now. My neck pain has improved significantly since starting the Lyme treatment, but I still am miserable all of the time and it is set off by any movement or just turning my neck the wrong way for a couple of minutes. I am hoping that it will improve my quality of life a little as it's pretty low right now, as many of you know. I did a search and didn't come up with too many folks who had taken this drug. However, none of the topics had been posted when we had several POTS/Lyme folks on the board. I know one of you with Lyme is also taking Plaquenil. For those who have taken it--whether you have just ANS issues or also Lyme... I would be interested to hear your experiences. I am wondering about side effects (sounds like headache and nausea were what folks experienced in earlier posts?), how long it takes for those to subside, what time of day you took the med, etc. I am going to start at a teeny tiny dose (1/2 of a 200 mg tablet every third day). For those with Lyme: Did it contribute to herxing or make herxing worse? (Since it has the anti-malerial properties)? How long did it take for you to notice whether it was helping with pain? Thanks!!!! Emily P.S. for those interested in more 'scoop'--I'm adding it to my regimen of minocycline (baby doses also) and Malarone (baby doses) b/c it has been shown to work synergistically with minocycline, can help with the neck pain, and has anti-malarial properties which may help if I also have another tick-borne infection called babesiosis.

Hello All! I do have a bit of an update on Melissa...mostly things have been in a holding pattern, so the CNN news feed dedicated to Miss Sunfish had slowed down a bit! (Thankfully!)... Anyways, today she got an NJ Tube (feeding tube through the nose and into the small intestine) placed. This is to try to see if she can tolerate some tube feeding. They will start her at TEENY TINY doses to see if she can tolerate it. Mack's Mom/Julie understands much better than I do why this might help her situation and perhaps Julie can chime in! But, it is sort of to keep things 'moving' more in the small intestine where the infection is and create less of a breeding ground for the bacteria and fungus that is leaking into her blood stream. At this point she is also still on antibiotics. She is miserable right now...she thought the insertion itself would be yucky, but she's been yucky all day b/c she's been throwing up all day and also can't swallow her pills b/c her throat is 'smaller' from the tube. Plus, her throat hurts, so she can't really talk!!!! NOW, Melissa not talking is going to be an issue! When she feels well enough to read this she will be laughing so hard at my comment. But, she loves to talk (as do I) and will go nuts if her throat stays sore for too long! So, that's the scoop as of now. Later alligators! Emily

Soph, The first day, Czar was pretty calm but I guess the second day he was a bit more nervous. I don't remember what kind of cat he is (sorry cat lovers....but I'm just not that into cats! ) but she says he's very 'dog like' in his behavior. Em

Oh Katherine, I am soooo sorry. It is so hard to put a pet down, but you did the right thing. I know it will feel so empty not to hear her pitter patter of toenails on the hardwood floors. And G will miss her along with you and yoru husband. I don't have any words of wisdom. Pets are our family and losing them is incredibly painful. Emily p.s. what a gorgeous picture!

Kristen! Thank you so much for the update. I have been so amazed by the outpouring of love and support for Melissa--and maybe haven't said THANK YOU enough myself! So, thank you for pointing that out more clearly! Also, I knew she was getting cards and such, but to have you actually BE THERE see it and write what it was like to be in her room--that was really beautfiul. I know how much of a difference having things around you that make you feel loved can make. Also, she had two sets of furry visitors! First, some therapy dogs came last week and they were, guess what? WHEATENS! So, she was like, hey, those are Asher! (my dog). And, this weekend she got to have her kitty cat come vist for 4 hours each day! That is so cool. I don't think Asher has it in him to be a therapy dog! Since he panics whenever I am sick-er. No medical news that I know of. I think she is a bit (okay, very) frustrated by that part. She called thsi afternoon but didn't leave a message. I'm having a few really crummy days and am sorry that I have not been able to talk to her and also to update much here. Kristen, it's soooo great that you got to see her and visit. And see her room and give her a hug. Now, rest up yourself from the long trip! And as Kristen said--You all truly humble and amaze me. Emily

QS, I hope you had a good/helpful appt. with Dr. Grubb? Yes, the holidays took a lot of us away from the board! 2007 seems to be off to a bit of a crazy start for sooo many members--(i.e. deep in the POTShole!). Glad you are back...yes, the board can get a bit overwhelming. I've only been able to post in little bits lately. Em

Pooh and Julie, I'm so glad that you both got to speak with Melissa... And thanks for updating us. She left a message tonight, but we've been missing each other. Right now, it sounds like things are in a 'holding pattern'...but I do hope that some of Julie's contacts will help her out! Goodnight, Em

QS, Where have you been?! I've missed you! So glad to see your name pop up! I'm guessing you've been feeling icky and that's why you haven't been around...sorry... Hugs, Emily

Mornings just don't exist for me! (i.e. it is 12:35 and I just woke up)... Anyways, I used to love a morning shower to wake me up and so my hair would dry the way I like it... But, since I started wearing stockings (5 years ago?) I always shower in the evening before I crawl into bed for the night. I take a 'tepid' bath, and crawl into bed around 8 or 8:30, and need to rest, lying down for about an hour before I can do anything. I don't go to sleep until really late (1 or 2), but I'm in bed until then, so can manage without my hose. The bath really helps my body calm down for the evening. When I am too sick for my bath, I really find it is hard for my body to calm down. Baths are very helpful before bedtime to help the body (Nina can tell you this! ). So, I put my stocking on right when I wake up in the am--there is no way I could get out of bed and do ANYTHING without getting them on first. Emily

Thank you Pooh! Em