DancingLight

Hello morganofcoveredwagonland, I do not even know what hyperalodsterowhateveritscalled IS! So, I supposed that puts me on about the same page as the endos out there. Anyways, your test is Thursday? So, I wanted to wish you the best for it and that they do it RIGHT. I did that stupid water deprivation test for diabetes insipidus and they did it all wrong too and I am never doing it again darnit! Keep us posted. Em

Amy, Were you able to speak with your LLMD and make a decision? I am sorry you got so sick so fast. Only you and your doctor can decide what your body can handle. I know that even though I have been sick for YEARS, my doctors felt that there was NO way I could handle IVs. If we did, it would have to be in the hospital for the whole time and even then, don't think it would work. Sorry I didn't respond sooner...I honestly just don't have any more words of wisdom than I have already shared with you. Also, in answer to your other post....for me, a herx is pretty much a flair in ANS symptoms to the mucho extreme. I do get more joint pain, achiness, fatigue, sometimes lower appetite, and drenching sweats. But for the most part my ANS just FREAKS out. Emily

Pamyla and Malosp, I'm sorry I didn't get back to this post sooner. I can't believe how fast the posts move from 'page 1' and then somehow I lose track of them, getting sidetracked by new posts! I also kinda wanted to wait a little bit to see how I was doing with the Plaquenil and check in with you folks! I cannot THANK YOU enough for being there for me. It helps so much knowing there are others travelling this lyme/ANS journey b/c it is certainly uniqute to navigate. Malosp--you are right about going slowly...it is so hard to stay patient though. i am glad that you are doing well without abx so far. in the end, how long were you on abx for? Pamyla--Your comment about taking the brand name is interesting, as my doctor did not say anything about that. I have medical assistance and it is virtually impossible to get anything covered so, I'll pretty much take this to start. I will ask my doctor at our next phone consult though about brand vs. generic. As for the Malarone--I am only taking the pediatric dose--1 pill a day. My doctor wants me to get up to the adult dose which would be four a day. When I tried to go up to 2 tablets a day I got really sick, but am okay at one a day. I don't want to increase it right now though while adding in the Plaquenil. I'm probably calling more shots than hewould like right now! ANYWAYS....TO THE POINT OF THIS POST! Do either of you remember how long it took you to get to the dose and how you went about increasing? I have done about 2 weeks at 1/2 tablet every third day, and now about two weeks at 1/2 tablet every other day. I had a teeny bit of tummy upset and headache at the very beginning but not anymore. Other than being so drowsy I think I am tolerating it fine. But, it is sooooo hard to tell b/c I feel so terrible I have no way of sorting out what the heck is what! I'm not sleeping as well even though I'm so tired. And am having more ANS stuff which is often the way I herx, but I felt this way before starting the medication. So, do I go up to 1/2 every day now? or 1/2 for two days and then a day off? How long did it take for you to notice that it was helping with pain? B/c I get massages to help 'clear the toxins' since I can't exercise and this past week was the FIRST time in years that my massage therapist could even touch my neck without me jumping off of the bed! Usually any work around the upper spine causes me a major ANS flair (pounding heart and also throbbing all around the base of my neck and skull). This time, NOTHING. It was amazing. She could even massage areas of my neck that usually she doesn't even TRY to do. I am hoping that if the fatigue is from the Plaquenil, It'll pass soon like it did for you Pamyla! I cannot say I am enjoying this process. UGH. I am also going to increase my mino to 4x a week from 3x a week and see how it goes.... At this rate I will be 80 before I start to feel human... Sorry for all of the ramblings! Not being very focused. Can I blame it on the Plaquenil???? Later Lyme alligators! Emily

This post has been so helpful to me. I am really going to talk to my urologist more this time around. It's hard to talk about this stuff with such a handsome doctor though! nursemorgan--VERY helpful information and much appreciated. i do wear pads all day every day--the pantyliner kind. such a pain. i do of course wear all cotton panties though! plus, i pee a zillion times a day, so even if i'm not using paper towels to wipe with (ouch!) that is probably not helping things, and bringing more of the blood to the already-irritated area. better work on that 'back to front' wiping thing, eh? i would love to go to a urogyn but it is quite a drive to get to one, and that seems such a daunting task right now. i'll see where i get with the local dude, and go from there. perhaps he can consult over the phone with the urogyn that he often refers patients too (and is part of the 'system' that he is in). we're just a branch of a larger medical center. btw, mammamorgan.... i realize this is a bit off topic, but if i don't just type it now i will forget! 1. i know you miss being a nurse so much. but, man, you are such a huge help on this board. i find myself hoping you will post with some of your wisdom when i have a question! i get so excited when you do. and, i know that it takes so much to post for you. so, just wanted to know, that in you own way, you are still being a nurse to so many of us. 2. i really loved reading your profile in the newsletter! you definitely deserved to be featured! yeah!!!!!!! okay, later alligators! emily

Megan, That sounds like a similar affect that Depo often has. Sorry you've had so many side effects otherwise though. Okay, this may not be my place, but I just wanted to make sure you knew that the diaphragm is only about 80% effective in preventing pregnancy??? Other barrier methods can be more effective...but I won't say more, b/c don't want to overstep my bounds! Sorry if I did! Emily

pat57...nope no message yet...hmmmmmm.... morgan....yup, i feel so relieved that wareagle posted this! i cannot even express it! and usually, i'm pretty open about stuff, ya know? omg, i would so love to not wear panties, esp at night, but i spot/breakthrough bleed ALL of the time! and during the day i'm so compressed it isn't even funny...all things i KNOW don't help the situation. no kiddos for me, so probably not prolapse... lina...i know that people with cfs/fms can have a higher likelihood of something like IC, but don't know about it with ANS issues. i also have lyme, and kind of thought that some of it might be from that, as IC can come from that. now, i am beginning to wonder if the OAD med and DDAVP is masking something else though? i feel best once the DDAVP kicks in and OAD med kicks in and there is no urine basically being produced to go into my bladder/urethra and irritate it. QUESTIONS: Tea, Lina, Pat, Morgan or others with these problems... anatomy question: can you hold urine in your urethra? can the urethra itself be irritated, rather than the bladder? how would you tell this? can anyone recommend a reasonable path to pursue with my urologist testing wise or med wise on monday? what helped you discover your problems and figure out what was what? Thanks, Emily

Rachel! I'm back! I know, you can hardly contain your excitement! So, I can ramble more about compression hose! Here's the other link: Oh, poop, it didn't work... http://dinet.ipbhost.com/index.php?showtop...amp;hl=Sigvaris Yeah, there we go. Okay, so, sorry I had to rush off before and seem so rude...All the sudden I realized my caregiver was here, ready with dinner and I had to get a move on. Anyways, I wanted to add a couple more things.... I LOVE the Juzo brand the best--and especially the style that Tearose mentioned. They are fantastic. The one trade off for more sheer hose is that they are less durable and run more easily. But, I do love them. I switched to the Sigvaris, like I said, b/c of the need for abdominal compression. With the Juzo, there is a line/seam where the compression stops, and I would have my thighs swelling about that point. One nice thing with the Sigvaris, is that b/c they compress the whole way up, there is no seam/line that you can see with shorts. I'm like Melissa about hose...I could care less about how they look if I can get up. (Which now I can't do much, but hey, another story for another day)...and I wore sandals etc. I'm the only one it seems that doesn't like the open toe though--they made my toes go numb. I don't know why I ramble so much about this topic and birth control pills, but I think it is because I searched SOOOOO long and so hard to figure out these brands and textures and all that that I just want to HELP someone not have to go through all that hassle. I really do recommend calling Ames Walker, talking to Frances and telling her my name and that you know me and blah de blah and she will tell you what I buy. One thing you mentioned is difficulty putting hose on and that is why you don't wear the waist high ones. Do you turn them wrong side out and then just keep enough to pull over your foot, then pull the rest on? Sorry, easier to look at the diagram. What brand are you wearing now? I found that Jobst were much less managable. I also know that Nina wears the Ames Walker brand without problem and I found them impossible to put on--b/c they have no stretch to them. But, they are way cheaper... That is the one thing with the sheer Juzo--they are very stretchy. As are the Opaque Sigvaris, but not so much for the sheer ones, which are the ones I wear. I don't have a problem putting hose on usually--and this is bizarre b/c I can't seem to do anythign else without problems?! We're so used to picturing hose as the ones that our parents or grandparents wore that were very stiff and white. The technology is so amazing now that they can still compress but have the double stretch in them to make them easier to put on. But, they are also more expensive than the ones that don't have these special fabrics. I really talked through with Frances what my needs were and what was important to me. So, if ease of putting them on is a big factor, ask her about ones that have more stretch. It's worth a shot. I do remember in the past that some folks swear by the tools that they make to put hose on. I think AmesWalker carries these also. I probably wear my hose out faster than one should b/c I am not at all good about 'easing them on' and blah de blah, I do just pull at them! But, if I didn't, I would NEVER get them on! So, maybe that's why I'm not struggling to get them on???? Also, I wanted to let you know that Ames Walker is having a president's day sale NOW. It ends Wednesday already! But, the fliers came late! So, anyways, it's 10% off plus free shipping, which is a good deal. If you don't get through, sometimes they are really busy, so when you call and do get through, if it is after the sale--TELL THEM you tried calling during the sale and they will still give you the discount! Hope these ramblings helped and didn't just totallywear you out!!!!!!!!!!! Later alligator! Emily

Maxine, What a whirlwind you have had...everything just happened so fast. I am so sorry for your loss. One minute you're preparing for surgery and then next your mom is gone, or so it seems it went that way. She was in so much pain, the only blessing is that she did not spend a long time in hospice in that much pain. Still that does not lessen your loss or your pain. Know that you are in my thoughts. Love, Emily

Rachel, Here's a post in which I ramble extensively about choosing a waist-high brand.... I gotta scoot fast....just realized what time it is... This whole thread is good. I just did a search for 'Sigvaris' and 'DancingLight' (match exact user name) and search entire post, and just got this hit and one other (a post by Kathy Ireland). So maybe you can find it! http://dinet.ipbhost.com/index.php?showtop...amp;hl=Sigvaris I will write more later.... Love, Em

pat57? did you type a whole message and then lose it b/c my box was full??? i'm so sorry. it is always full. i'm horrible about cleaning it out. i'm a 'keeper' and hate deleting good messages! anyways, i just deleted some stuff, so there is room, if you are able/willing to share what you didn't want to post on the board. THANK YOU FOR ALL THESE ANSWERS! It sounds like I need to get my urologist to be a bit more agressive about investigating? Or travel to a urogyn, (a female one). I feel so glad just not to be alone with that stupid 'stimulation feeling'. Gosh, was I embarrassed and thougth I was a total weirdo--esp. b/c the urologists treat you like you are one! Em

WE, I have also seen that you need to be taking a monophasic pill instead of a triphasic pill when suppressing. LBS, I suppress my period using Alesse also, and have only had one period in the past 3 years (not exactly kosher with the docs, but the best we can do right now). Best to have 4 periods a year. DD, Did your gyn know you were suprressing with the tricyclic pill? You can always call a pharmacist. I swear they get it right more often than the docs when it comes to med questions like that. Lthomas: NuvaRing, as I understand it, IS a bit lower dose of hormones, BUT b/c of the absorption where it is placed in the body, you don't need as much hormones to absorb the same amount as you would taking an oral pill. The capillaries are very absorbant in the area where the Nuva Ring is placed. Later alligators! Emily

For those like Pat and Tea who have problems with prolapse (uterine, bladder, or otherwise)...how do you diagnose that???? I have wondered about this myself... TEA...are you reading??? You have had a lot of bladder stuff yourself! Emily

OHMYGOSH! Wareagle! I cannot believea another person just described symptoms like I get! I don't have vaginal yeast or a bladder infection. I have had this symptom for YEARS! And that is how I feel, like it's in the urethra area and clitoris. I actually wake up moving my pelvis to wake me up to pee. It is so embarrassing. Try telling male urologists this. NO, I am NOT having wet dreams! Especially NOT for 5 hours straight in the mornings when I am trying to sleep. I have been so puzzled by this symptom myself. For me, I found quite a bit of relief from a drug for overactive bladder, for bladder spasms. BUT, I can only take it at night b/c for some reason it makes me hold fluids if I take it twice a day. Sooooo, during the day my symtpoms bother me more, esp. when I want to rest. I can block it out more when I am not just lying there, but otherwise it is insane. Last night, despite my DDAVP and Sanctura I had a horrible night of the symptoms you are describing. I have tried several other OAD drugs and NOTHING touched my symptoms. Do you pee out teeny tiny bits? Like, feel like you have to go (b/c it feels 'stimulated') and it doesn't feel like it's in your bladder? It feels like it is in your urethra? And sometimes you can go and sometimes you can't. But, sometimes just a little teeny tiny amount of urine will come out and you will feel better? But, then five minutes later it happens again? This is what happens to me all afternoon when I want a nap! So frustrating. I CANNOT rest with that feeling. It's so weird you posted b/c 1. I am seeing my urologist next week and I want to talk about this same issue. B/c he keeps dismissing and, doing a bladder scan and saying 'well, you're emptying fine'...but emptying to them is as long as you have less than 100 ccs in your bladder. And I feel like it's not even in the bladder, like you describe. And it's teeny amounts. I was planning to post on this very topic this week! 2. I haven't seen you post much and really have been wondering how you are doing. You said you were out of town for two weeks while Melissa was in the hospital and you are going out of town for another two weeks...which made me wonder if you were doing better??????? So anxious to know! I hope someone can shed some light on this problem, b/c I am as frustrated by it as you are!!!!!! You keep me posted, I'll keep you posted! Deal? A desperate Emily and Wareagle are hoping for answers!!!!!!! Later alligators! Emily P.S. Have you ever had symtpoms of IC before? B/c it can be 'episodic' or triggered by something like a bubble bath. But, I don't seem to have that. Although, it can fit with folks who have things like Lyme, FMS, and CFS....the drug for IC is Elmiron.

Rachel! I pretty much stay inside all the time in the air conditioning. It is so weird to hear you talk about it getting hot there when there is a winter storm watch in effect here! As for what to wear. Honestly, I got to the point where I didn't care if my hose showed b/c they are skin color anyways. Most people could care less. So, I wear shorts and usually lightweight cotton stuff with elastic waists for more breathability. I also sometimes wear skorts. Before I was so sick I always wore long skirts and dresses, but it got to be too much and since I don't really get to leave my house, I just wear shorts now! As for the ingrown hairs, I would call the pharamacist or ask your PCP this week perhaps. I think there is a product called something like TenSkin that people use after waxing to keep from getting the pimples, and I wonder if something like that could help you with the irritation from the hose. My hose often cause the ingrown hairs also but for some reason, lately I haven't had such a problem. I started using the Schick Intuition razor which has the cartridege that acts as shavegel and the razor all in one. They are a little more expensive than the traditional shave gel/razor combination, but man, you can shave soooo fast and I have had much less trouble with the ingrown hairs. Maybe b/c I keep up with shaving more frequently this way? Not sure. This is gross, but I would always have to 'pop' the ingrown hair zits or almost scrape them out...it is annoying. Hope you find some solutions! Later alligator! Emily

Tea, Karyn is a neurologist.... Em

Oh Maxine, There is nothing words can do at this time to comfort you....I am so very sorry you are goign through this on top of everything else. Such stresses really help our adrenaline surges, which I know you struggle with so much already...remember it's okay to take some Klonopin in these instances, k????? I am so sorry you are going through this all....please know you are always in my thoughts. Emily

Amby, Yes, Nausea is a common symptom associated with ANS problems. If you do a search on Nausea you will see how many times this topic comes up, which is a sign as to how many people struggle with it. Our ANS controls not only heartrate and bp, but also our bowels, bladder, nausea, sweating, etc... Before I became this sick, nausea was often a 'clue' that I was doing too much, etc. Emily

Yes, Morgan, you were MIA for a while and it was very sad! As it is when Sunfish and Poohbear are gone... Others have been popping up a little bit, but mostly quiet...like Gena??? I want to hear Ruby stories! And Katherine...see you post here and there and wodnering how you are doing without the pitter patter of Sabine's footsteps on your hardwood floors? Soooo hard to go through... Em

This has been a rough year for so many, and I have noticed so many 'oldies' missing... Just wondering if anyone knows how Ernie is doing (noticed she hasn't been on in over a month?). Or Briarrose (as Roselover was wondering).... Or MaryfromOH.... Or Laura? The list is so long, I know I am forgetting a whole bunch of folks at this moment... If you have been away and are up to posting how you are doing and what is going on in your little world...let us know...I'm worried about so many of us being in the canyon! It's been good to see other names pop up, like calypso, roselover, michiganjan... So, this is just a post for 'checking in' in case you don't feel up to starting a new topic, but are able to just check in for a moment! You are all missed. Emily

Dear Jan, When I saw your name under dawn's post my heart soared. It meant you were logging on, peeking at the site. I cannot imagine how heavy your heart has been these past few months...You are in my thoughts always. I wonder too, how you are faring not only emotionally, but also physically. If you are up to checking in with us, let us know how you are doing... If not, that is okay too! But, I do want you to know how much you are missed. Love, Emily P.S. I have recently gotten some new healing relaxing cds and they often make me think of you. Two that I think you would like: 1. Guitar for Relaxation (since you are learning classical guitar). Totally cheesy title dismisses that this is actually music played by a quality musician. 2. Carlos Nakai--Inner Voices (native american flute. he has a zillion cds, but i do love this one) I'm sure there are more, but I'm mental blocking right now!

Rachel! I forgot to add (which I think someone already said)--since you wear compression hose every day that should help lessen the risk of blood clots since they do at least help to keep blood from pooling and help keep it moving! Also, sometimes docs pick a pill and pick it b/c it's what's popular or it's what they have samples of. So, don't hesitate to ask WHY this pill? WHY is this pill good for ME? Also, you can see if the doc things a monophasic (same level of hormones all month long) vs. triphasic pill (three levels of hormones and then the placebo weed) would be good for you. Also, some of the pills have iron in the placebo week and others don't.... Oh, and you're welcome! I felt like it was SOMETHING I could do in return for you! Later alligator! Em

Thank you for clarifying Tea! I wouldn't say it sounded 'harsh'--I just wondered if you really viewed it that way. But, now I see what you meant. Then, after I wrote the email...late last night, I was psychoanalyzing MYSELF (look out! ) and realized that maybe what struck me was that I would never want people to see me as selfish b/c I am sick and trying to get better. I want so much to be functioning and not dependent on my family to FOR everything b/c it drains them. So to me, in some ways, seeking out answers, although also draining, means MAYBE taking that burden off of my family someday if I can get healthier. So, I think it was about ME and not so much about you. Lesson learned on both ends, eh? Later alligator! Emily

Just saw a post from your fellow Irishwoman on the board--and she spells her username with a space-- Kathy Ireland -- so you should be able to do a search and send her a message that way! Emily

Okay, here goes! I hope I can help you out a little, although I really can't answer your questions for certain...remember I just love this stuff, but need a lot of brushing up! As for breast cancer risk, I wasn't sure about that one. You can read the article lthomas sited and double check with your doctor. For the most part, the pill actually lowers our risk for other cancers, particularly endometrial and ovarian, by a HUGE percentage depending on how many years you take the pill. Each time we ovulate, researchers believe that can trigger cell changes that can lead to cancer. So, no ovulation, less cancer risk. (Years ago, women spent many more years of their lives pregnant than we do now, so in a sense avoided as many possibilities for cell changes from ovulation). Basically with the pill you are just simulating pregnancy. So, it would be great if it would help you to feel better! I know that I cannot be without it. I actually supress completely and you may have read that having a period in December knocked me for a loop. I would agree with Rita about the risk of blood clots--they increase with age and smoking. Also, higher dose pills. For instance, you might remember how revolutionary the patch seemed and how excited folks were about it. Then, they realized it had higher incidences of strokes and blood clots than other pills b/c it was releasing more hormones into the body than they had previously understood it to be. However, they still told women that if it meant they would comply with that method over another, the risk might be worth it if they did not want to get pregnant! So, even though the risk was higher, the risk is still very small. Some people are more prone to clots and it would be impossible to know if we'd be one of the unlucky ones I guess. But, as for risk factors...you are young and don't smoke. I worry, like you do, about blood clots. For some reason I am terrified of them in an absolutely unrealistic sense. But, the reality is that they are very rare. I think the lower dose pill you take, the lower your risk. How much lower, I don't know. You said you don't walk 'much'--but do you get up to go to the bathroom a few times a day? Or get up to get a bite to eat? Draw the alphabet with your legs while lying in bed? I am a bit obsessive about doing a bit of these in-bed exercises as much as possible. You're not lying totally still and not moving AT all. This is a legitimate concern though and our inactivity could increase our risk, so it may be worth getting some reassurance from your doc. For me, I don't see another option, so I take the risk. And my doctors--gyn and ANS doc--do not seem concerned. Which brings me to articles on the connection b/w the pill and NMH, etc. All I know is that so many women get relief from taking the hormones. I don't think I've come across an article, but perhaps someone else has. I have seen both Dr. Grubb and my current specialist and both have certainly encouraged the use of the pill for controlling symptoms. So, even though there may be no published article or study, it is certainly a treatment often used to relieve symptoms surrounding those 'two weeks' of the month. As for higher vs. lower dose pills. I would take the lowest dose pill possible that WORKED for me. Right now I take Avianne/Alesse. (Why they named a pill after the bird flu I do not know!). What we have learned over the years is that women need much less hormones to do the job, than we thought. When the pill came out years ago the amoutn of estrogen in them was HUGE compared to what we use now, even in our higher dose pills. If you find that you have too much break-through bleeding or such, then you could go to a higher dose pill. But, in general the trend is to go for lower dose pills for less side effects, etc. Why take more hormones than you need to? Ya know? Also, if you find you feel great on the pill, and still lousy during the week of your period, you can opt to take your pill for three months without a break and have just four periods a year. This is FDA approved, unlike what I am doing by suppressing constantly! Basically, it's hard these days to argue against taking the pill. Not to mention it's great birth control when used properly and no more messing with barrier methods. So many articles are constantly in women's magazines saying 'more reasons to take the pill'....and the latest one I saw said it was safe to take it for more than 20 years! The perks listed were: lower cancer risk, clearer skin, lighter, less painful periods, pms relief, endometriosis relief, polycystic ovarian syndrome relief, fewer periods (if you take the option to go four periods a year). When choosing which pill to take (you will have to see how up on the different pills your PCP is and see if you'd rather see a gyn instead) is what you need the most relief from. i.e. different pills have different forms/levels of progesterone and estrogen and would be more effective for breast tenderness (mircette) vs. bloating (yasmin). Let me know if you have more questions or if this even helps at all! It's gotten late! And the Ambien is kicking in! Let us know what you decide with your PCP and what you learn that I need to brush up on! There are sooo many choices out there now, that we have to remember that part of the process can be finding the RIGHT pill for each of us. Later alligator! Emily

Thank you Miss Johns Hopkins! That was really interesting. So, look what that physics class I took could have lead too?! Who knew! I remember thinking while I was taking physics for pre-med, when will I use torque and velocity and all that jazz that I can't remember now in medicine????? Well, tada! Okay, yes, I'm goofy tonight. Emily