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EveAvent
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Posted: Sat Apr 21st, 2007 02:20 pm |
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Will someone tell me what the extreme hot flashes and cold chills all within 5 mins is about? I know it's not Menopause because that was over. This is new and VERY irritating.
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Never let the disease dictate who you are for more than 2 days in a row. Fight Back!!!
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DonnaReagan
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Posted: Tue Apr 24th, 2007 02:20 am |
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Hi Eve!
Yes, most of us are familiar with the hot/cold flashes. It could be part of the Lyme or a co-infection. I've been told in the past that it was Babesia - and I've had it really bad!
When I went to the LDA/ILADS Conference back in the Fall, I thought I was doing so much better - and at first I thought there was something about the climate in Philadelphia because I broke out into some serious sweating. I had sweat dripping off my nose! My clothes were literally wet. When I went to meet & shake hands with the doctors, my hands were just slimy & gross. I was so embarassed, but more than anything I was MISERABLE.
The only clothes I had brought to the conference were for Fall type, Northern-ish weather, and I was constantly trying to think of ways to re-combine my various outfits so that I wore less & less. They probably thought I was some hussie looking for action, when I was just trying not to vomit from the misery!
There I was surrounded by hundreds of docs, and there really wasn't anything any one of them could realistically do for me - except maybe fetch some ice...which NONE of them did! As I recall, I asked one of them to start me an ICE IV. He laughed. I was actually SERIOUS!
Eve, for me, those hot/cold sweats (mine are mostly HOT) usually make matters worse, by causing me greater fatigue afterwards; it seems to really take a lot out of me, so if I have one while I'm out running errands, I know to head home as soon as possible. Many times they are accompanied by dizzines because this disease is just barrels of fun.
Have you been tested for co-infections by any chance? You NEED to - just in case your doc hasn't thought of that yet.
Stock up on ice paks and rest up my dear!
Hugs,
Donna
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EveAvent
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Posted: Tue Apr 24th, 2007 08:12 am |
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| Yeah, but the test for the co-infections was about $800 more and I'm paying out of pocket so my insurance wont drop me. I guess at some point I'll get that done. I was in the docs today and he drew some labs so maybe that will show something. All these PILLS!!! I have a calandar with all my pills and supplements...cack. I can keep it up for a while (5 mos) but to know that there is NO END EVER??? How do we accept that? I'm so scared Donna. I don't do illness well. I complain and whine and fall apart and forget to be "grateful" and I don't want to be such a negative force, but lawdy, lawdy this is horrid. I am going to get myself an FIR sauna. That might help. Yeah, hot is mostly my state of being too. But right after a huge hot flash, I just chill all over. It can be 80 degrees and I get chilled - right after a HUGE hot flash. Hate it....
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Never let the disease dictate who you are for more than 2 days in a row. Fight Back!!!
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rivergem
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Posted: Sat Apr 28th, 2007 04:49 am |
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Hello Eve and Donna,
I can't imagine about the hot flashes. I mean I've had some this past year, but I've also been using Neurontin, originally prescribed for something else. I read at Columbia University's website about using it for lyme disease. I started using it for the relief I would get in my legs and back, not knowing until then, that I actually had nerve damage caused by lyme. I'd also met a woman a few years ago, who had been in a hot flash/menopausal study using neurontin. Sweat was POURING off her face. She said it was the first and only thing that ever gave her some sense of relief, but was taken out of the study when brain scans they were monitoring her with, came back abnormal. She was miserable. Compared to her, I've only had warm waves. But, they too, are irritating; waking me in my sleep, etc. I'm always backing off my meds, thinking I'm better or just not wanting to get too additive, and back comes the flashes.
Vicki
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Eve Avent
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Posted: Sat Apr 28th, 2007 09:50 am |
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Hi Vicki!!
Oh, the hot flushes are dreadful. I don't know your age, but part of mine and Donna's could be menopausal still, but I doubt it. The chills are new and the flushing is so severe that I wake drenched each night about now (3:42 am). It takes me ages to get back to sleep. (my lovely husband snores like a lawn mower all night!) I've had this for 17 years and I've learned to appreciate every thing that I am NOT suffering from but being prepared for it when it comes. My husband was put on that Neurontin stuff for his peripheral neuropathy too. (now we know it was Lyme) Because of the PN, he couldn't get insurance without going to the high risk pool because they called in "heart related". Jerks. I wouldn't take it. In fact, I refuse most prescript stuff whenever possible and certainly everything that hasn't been on the market for over 10 years. Those idiots are using the American public as guinea pigs and making a bundle and I refuse to contribute anymore. Plus I can't take anymore side effects to all the meds they keep throwing at me at min $100/script, ya know? (also, I made my husband stop taking it after I read about it)
Keep posting and tell us how you're doing. I love listening to how others cope. We've all got to raise eachother up during the bad times and celebrate the good times.
Eve
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rivergem
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Posted: Sun Apr 29th, 2007 07:06 am |
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Hello Anne,
I really don't know how you've survived!!! You really do need to write that book. Maybe if didn't look at it as a book, but like one "incident" at a time. Just write one memory at a time, something triggers a memory and BAM, WRITE IT DOWN!!!
Title the moment in time and bank it wordperfect until one day, wa...laaa. Instant Book!!  You've definitely got the gift of writing and seem to manage longer than most, posts. ...So, I'm ready to read it...
Vicki
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DonnaReagan
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Posted: Mon Apr 30th, 2007 01:10 pm |
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Rivergem - What awesome advice to give about HOW to write a book? Have you written one? And where you meaning that remark to go to AnnMarie or Eve?
Eve - Speak for yourself dahlin' - you know, about those pre-menopausal sweats! I'm still in my 30's honey! I still plan on having another HEALTHY child after all the Lyme is gone.
OK - so what is this topic category SUPPOSED to be about. We need to try to keep on topic as much as possible, so when people come to read about 'hot & cold' flashes, they don't get confused about our 'rabbit trails' we hop down.
My dh is standing here ready to take computer back.
Have a great day!
DR
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rivergem
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Posted: Tue May 1st, 2007 05:45 am |
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Sorry about that Eve...Donna called me out on that one, thank you very much.
My heart hurts...can lyme feel like a heart attack...or trigger one?
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rivergem
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Posted: Tue May 1st, 2007 09:55 am |
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Still here, will live to see another day!! Seriously, I do have my first and hopefully last, cardiology app't coming up.
Sorry about the Anne/Eve posting...chaulk up to a lyme moment.
Rivergem
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Eve Avent
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Posted: Tue May 8th, 2007 08:01 am |
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Vickie:
I did not know until recently about that heart thing. It is PAINFUL. Apparently the heart lining becomes enflamed by these little suckers and that is why we have chest pain. It's so weird. When my chest hurts, my rash itches and my mouth burns and I feel wired...it's like my whole bodie's in overdrive, sleep fagetaboutit...you get any of that?
Hey, hey I wanted to tell you guys that I finally saw one of those uh, wazit?? Medical Increible shows with a guy that had Lyme!! It was perfect. Men are SO unable to cope with this. This poor guy was in the emergency room every day for 4 weeks. He was admitted to 2 prestigeous medical diagnosic centers for 5 days once and 6 the next and they never found Lyme!!! (see was writing his will on paper napkins! been there, done that) Lordy, I LOVED seeing it on the tube...just once so far.
Eve
Last edited on Tue May 8th, 2007 08:12 am by Eve Avent
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Eve Avent
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Posted: Tue May 8th, 2007 08:04 am |
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Donna:
Ohmigod. When I meet you, I will bend my fat butt over and you can kick me as high as yo leg will reach, wherever you want. Your wisdom totally belies your age. Really, you are not allowed to be the leader of this horrid club at such and young and tender age and you're such a wiseass that I assumed you had lived past FORTY. (still choose the target when we meet)
Love you and I am berry, berry emabarassed
Last edited on Tue May 8th, 2007 08:07 am by Eve Avent
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rivergem
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Posted: Thu May 10th, 2007 06:11 pm |
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Eve, did the Medical Incredible show have lyme in the listing? I would LOVE to have seen it. I've tried to look in the internet tv guide, but can't find anything specificly about lyme.
I found out that I have mitrial valve prolapse. Combine that with the heartburn I've had lately, and I don't feel good. Next week they're putting me on a 24 hr. heart monitor, but my doctor doesn't know anything about lyme--said it was in internist thing.
Vicki
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Eve Avent
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Posted: Fri May 11th, 2007 05:05 am |
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RG
You do NOT have mitrial valve prolapse if it was my guess. How old are you? All of us with late stage Lyme (I'm 52), have horrible stabbing pain in our heart region and racing pulse and palpitations. It is inflamation of the heart lining and is often misdiagnosed as mvp. They make a great deal of money from scareing us stupid. They've been doing it to me for years. Is the pain in your chest constant or occasionally lifting? Some nights my entire left chest is on fire and under horrible pressure and I cannot find relief, but then, I wake up and I'm fine!!. I've had ALL the tests and they find nothing. (Please pay at the front $16,000.00 one day in hospital)
Keep me posted honey and I'll say a prayer that you're ok.
Eve
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Eve Avent
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Posted: Fri May 11th, 2007 05:08 am |
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Oh, Vickie, I forgot...that piece I saw on tv was totally accidental. I taped in on my sat. and I'll find the episode and send it on to you. There is one coming on in June, I've heard. I'll get the date and name of it as well.
Cheerio -
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rivergem
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Posted: Fri May 11th, 2007 05:54 am |
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Hey Eve,
I'd love the lyme piece. I'll be looking for it in the guide, too.
I don't know about how they determine what's lyme and what's not in any symptoms, much less the heart. I was watching the screen while they were doing the ultru sound. It was so wierd. The technician kept measuring the valve opening and closing. I don't know what a normal recording looks like, so I can hardly compare, but it looked like two hands reaching out in quick succession. I would have thought there would be only one distict open/close. The pain is definitely related to my caffiene intake. I don't know how I missed that one. It is like this heartburn has made me sensitive to foods that I never was sensitive to before.
I am 50 and in late stage, too. I've had the racing and palpatations off and on for over a year. There was pain for a few weeks, twice last year. But, what scared me to the cardio was what I thought was heart attacks. Those episodes were like exact symptoms of one. Once it subsided and the pain dimenished, I belched (hours later, and in a very, ladylike manner, of course).
Have you been on abx's for long? And, do you have hope that this will diminish for you? I guess I'm asking if you are having more good days vs. bad days, yet?
Well, thanks for trying to help. I'm having my cardio doc send everything to my infectious disease doc.
Hope you are doing better tonight.
Vicki
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