Gord
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Gord |
heat activated? | ||
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My relapses seem to be heat activated. I am better in the winter when its colder and worst in the heat of the summer. When I work hard enough to sweat,
symptoms increase. Has anyone else noticed this?
Gord |
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sashawest |
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Hi Gearhead! Would you give me the name of your neurologist and where I could get in touch with him? I've had this disease for about a month longer than
you, but the same symptoms keep coming back, or really never leave. My Dr. won't change my meds and I would like to see someone new. I live in Colorado,
but am willing to travel anywhere to get some relief from it. I'd appreciate it greatly. If you want to just send me an e-mail that would be fine as well.
Thanks, Sasha
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mumto7 |
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Gord,
You know, I'm not sure. I've had WNV for two years now but haven't noticed a difference summer/winter. If I over due it I definetly relapse. |
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gearhead |
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Hi Sasha. Great to hear from you but sorry to hear you're still sick!
I don't have a good neurologist either. I had a good MD in Fort Collins but I have since moved out of state. I think Jody Clauson or Jennifer Holmes have a good neurologist though. Or maybe it was Janice... Jody? Jen? Janice?
Last Edited By: gearhead
01/06/09 17:15:00.
Edited 1 times.
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gearhead |
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Hey Janice and Gigi thanks for your information on Cymbalta. Everyone on this website is so helpful and there is so much interesting information here.
I started 30mg/day of cymbalta two weeks ago. I was really nauseous the first week and didn't want to eat very much at all but after doing some research, nausea usually goes away in two weeks or so. I have noticed a huge difference already in pain. I never took meds for my everyday aches and pains before this and now I don't know why I didn't because it saves the body a lot of energy. **Sorry for this next sentence boys**... I noticed a HUGE difference in the amount of pain I got with my period as well, which had previously been virtually unbearable. That was a very pleasant surprise. I have noticed a little help in my mood so far (not that I was really depressed before, but I would have a hard time being optimistic on my "down days"). In the last two days I've noticed I'm more optimistic about the future. I also noticed this week that it's easier to get out of bed (which is ususally when I'm the most tired is in the morning) and do stuff. I hope this continues. So I guess so far so good. Hopefully later this week I'll start high dose vitamin B to help with energy. |
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Jclauson |
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I have a pretty good neurologist, but he is in Chicago.
He seems like a pretty intelligent guy and good at what he does. I would grade him a C+ or B- regarding West Nile intelligence. So far I have not found a doc out there that impressed my socks off, in any speciality, regarding West Nile Virus intelligence. |
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sashawest |
Cymbalta & B-12 | ||
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Hi Jan!
I hope I'm responding to the correct person this time, 3rd time's the charm right? So how much Cymbalta do you take a day and also the B-12 shots? Who is your neurologist and why has he prescribed these meds for you? I've been on Lyrica and Xanax and Vicoden, which helps keep the pain under control, but my Dr. doesn't seem to want to change my treatment. Probably because he's clueless, as most of them are about this disease! It's so frustrating. I've had this since July, 2007 and still have many symptoms, but sometimes I wonder if it's not the meds causing some of the cognitive issues. Also, the Lyrica has made me gain weight which is definitely not good and I need to get off of it. But I fear I've become addicted to Vicoden and Xanax, because I cannot function without them because the pain gets too intense. It takes me 3 times longer to get my job done when it was just so automatic. I really have to concentrate and have no distractions, which is nearly impossible since I am the Human Resource Manager for a large commercial construction company. If I could get the name of your neurologist and where he's located, I would greatly appreciate it. Maybe he could advise my Dr. of the treatment or find another neurologist near me. I just don't trust any of them here, because they honestly don't have a clue on what to do with this disease. It's so frustrating! I wish I could be back to normal, pre-WNV, with the right meds or supplements. This has got to be one of the hardest diseases to treat because everyone has different symptoms, severity of them, and length of time, not to mention relapses, which occur all the time. I start to get paranoid that, people, even my family, think I'm using it for an excuse, but they've not walked a mile in my shoes and until they do, I get extremely defensive and then just want to give up. If Cymbalta amd Vitamin B-12 shots help you, I would be willing to give that a try. Please let me know, I'd appreciate it. Sasha |
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gearhead |
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Howdy buddies.
I just thought I would give an update on my Cymbalta experience. Well surprise surprise for me, Cymbalta was not covered by my health insurance. So I took it for three weeks from samples from my doc and now have to go off of it. I really liked how the Cymbalta made me not really care about the little hiccups in life. Things would happen and I would just smile and think "oh well." I like how I didn't feel much pain in the last three weeks also. I didn't like the really bad constipation or the big brain fog. It kinda felt like I was dreaming while I was awake. And as for a sex drive....well, it was non existant. Going off of this stuff has been interesting so far. I kept hearing dogs barking and I've had really vivid dreams that has kept me up for the past four nights in a row. I even walked around the neigborhood in the middle of the night trying to figure out where the barking was coming from. Come to find out (thanks to my dear patient hubby) that it was all in my little head! It also felt like I was having a sinus infection problem. Linda feels like a bad bad flu. And then the nausea started...not just mild nausea either...but more like can't get two feet away from the toilet for days. And the dizziness didn't help the nausea either. I just didn't want to move at all. So It's been five or six days and I thought I was losing my mind and then looked up Cymbalta withdrawl and all these symptoms (even the barking in the ears) is something others have experienced. I'm not sure if this is a common sequence for people going off antidepressants, but for me this has been really wierd to experience. Fortunately people have suggested benadryl help with the withdrawl. I just started it and it helps with the sinus pain and nausea. I don't think I'd have committed to go on this stuff if I knew it would feel like this coming off of it. This is the first antidepressant I've ever tried, so I'm not sure if what I am experiencing is something that is common with all antidepressants or if it's specific for just Cymbalta?? My doc recommends I try another antidepressant but I don't think I will after going through this for the past week.
Last Edited By: gearhead
01/17/09 20:23:14.
Edited 1 times.
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janwan |
cymbalta and sasha | ||
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Sasha,
My neurologist is Ruth Fredericks in Jackson, MS. She treats a lot of wn patients with poliomyletis and other serious disabilities. All I know is that she told me that this drug works better than any other she has tried for her wn patients. She said the vitamin b-12 with a prescription of folbic 1x daily is what she prescribed for me. She called the b-12 and folbic a "cocktail". It has continued to help me. None of these are in generic brands yet, so they are rather expensive. My co-pay is $60 a month for the cymbalta, but you can get it through mail order for $125 for90 day supply. I am in a bit of a relapse right now. Work is stressful and long hours of stress has brought on my hip pain and more neuropathy. I continue to take the meds,though. Gearhead, I have read about some of the withdrawals from cymbalta posted on line. I try not to read that stuff because it makes me anxious about my own experiences. I have very vivid dreams while taking it. Before taking it, I never could remember my dreams. That, and constipation are the only side effects that I have noticed. I can live with these two things since the benefits outweigh the side effects. So far, I haven't heard any voices or barking. I'll let you know, though. The neurologist told me that if I am doing well in March, she will cut me back to 30 mg. a day and see what happens. Good luck to everyone. Janice in MS |
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sashawest |
Cymbalta & B-12 | ||
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Hi Jan!
Thanks for the info on your Neurologist and treatment. I may try and contact her to find out if she knows of anyone here in Colorado that might use the same treatment. Does she have an e-mail or what would be the best way to contact her? Thanks again! Sasha |
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mom2babyd |
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HI Janice,
Ditto on the crazy dreams from the cymbalta! that has not let up for me yet, but i'm a year next month on the med and am going to start to wean down slowly to 30 myself after a year on 60 and then see if i can go down more. didn't hear about the barking dogs, that had me cracking up! and the only voices i hear in my head are my different moods telling me to not procrastinate or motivate; so i'll keep those for now. I also have to ditto on the constipation! i'm looking forward to that going bye-bye! i had the same effect when i was another ssri, so it was no surprise for this to come up again for me. best of luck with a quick recovery from your current flare-up. gigi |
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tina |
relapse? | ||
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Hi,
I was diagnosed with a "mild case" of WNV in the summer of '07. Several times I've had reaccuring symptoms, such as severe body aches, fatigue, and a rash. The pain is pretty severe. The doctor says it has nothing to do with WN. She said that once you're over it, it is out of your body... She then said it was due to my depression and stress. I've always had Depression, but it seems to be getting worse. Is this due to West Nile? I've also read that people's eyes are giving them trouble... blurry vision, and double vision. That happens when I've been reading for only a few minutes. Is there any way to get my doctor to believe me? |
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duck19 |
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Um... one - I don't think your doctor knows everything about West Nile. Personally, I suffer body aches, fatigue and rashes quite a bit. In fact, I
experienced all this last week.
Additionally, as far as the WN being out of your blood, I don't think that's completely accurate either. I've had WN since 2003 and I am still dealing with these issues of "return symptoms" (as we like to call it) as a lot of us are. I was told by my specialist that it stays in your blood - whether you get well or not. It stays there as an anti-body (this would be why they pushed people with WN to give their blood to others). For some weird reason, people are only affected by WN if they are bitten by mosquito's. And depression and anxiety are added symptoms to West Nile. I used to get depressed pre-WN, too. And I also used to be pretty acrophobic. However, with WN, both these things have just been exacerbated by this illness. I have extreme vertigo now (as others do) and my depression comes and goes (as others as well). Also, an increase in anxiety seems to happen, too. I just have to wait it out. Others take medications, etc. So, no. You are correct in suspecting this has to do with WN. And I wouldn't doubt you are having trouble with your eyes. Pending on where you live, I would try to seek out a specialist. I used to go to a specialist for the terminally ill. Not that I was that ill, but she had worked in Africa uncovering the root and symptoms of West Nile so it was easy to talk to her. All the doctors I had before just wanted to throw me on medication for being "depressed." I got really frustrated. If you have trouble locating doctors, I would do research on West Nile and take it to a doctor or have your doctor recommend someone who really knows about West Nile. Here's a cool article on West Nile. I don't know if it says anything about it staying in your blood, but I do know that it tells you that symptoms like you were bringing up are normal to have. This is just a start: http://www.medicinenet.co...encephalitis/article.htm Tip: Because of past experiences and how the CDC has been reacting to West Nile, I wouldn't necessarily trust what they have to say about WN. They don't even really consider it to be that serious (unless the executive big suit really got affected by WN). Just a note. I could be wrong. Things could have changed. |
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jenniferholmes |
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Tina, I agree with everything duck19 says. It has taken me 19 months and many doctors to finally find a PC and immunologist that have helped me. They support
me in whatever I may need. The immunologiest said he has seen people like me, understands what I'm going thru and has no solutions. He is willing to do
anything to help. He does nto understand why the medical community has not had more research done on all the symptoms we are all experienceing. The consumer
review panel is a step in the right direction. At the WNV conference in Feb science finally recognizes our symptoms as long term WNV. Now maybe they can find
some solutions. I take any othe information I have to my doctors. If they are a good doctor they will support you and accept any information. I know it is an
exhausting hunt.
Wish you well. |
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tina |
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Thanks,
It does help to know that others understand |
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JulieWatson |
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I've read over some of your relapse comments and I'm sorry to say that they do not go away. I was diagnosed in 03 and still having relapses in 09. I
had WN w/meningitis and encephellitis. I was out of work full time for 4 mos and part time for 5 mos. When I talk to the doctors now, it's almost like they
don't believe me. The fatigue is probably the worst, I could sleep up to 12 hours a day and not even phase me. The depression seems to never go away. My
joints and my muscle aches are often to the point of miserable. I have a strange pain in my forehead that feels like an electrical pulse, does anyone else have
anything like that? I just want to talk to SOMEONE that has been through this. I have never met another person that has had WN and would like to just talk
about it. Is there any help out there that anyone knows about. I sometimes feel like this virus has been left out. 6 years later I'm still having problems
and no one really has any answers.....so if anyone does, I'll be happy to hear them.
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duck19 |
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As I have mentioned before (I think in another post), that I, too, go through what you are going through. I actually got it when you did and am still going
through these things today - again, just like you.
Best advice I can think to tell you is to just ask for help for any certain symptoms. Many of us here have had the same issues you are having and have learned to lessen the pain, weakness, etc through certain foods, pills, or even just simple and free things like light exercise, naps, etc. What I do for the muscle jumps: Eat potassium (maybe pick up some joint soother or pills for this, too) ... For the fatigue: Take daily naps (if I skip them for a few days in a row, I'm a wreck), take Vitamin B. At night, go old school: take a hot shower or bath (even if it's every night) and maybe add a hot tottie to help you rest better. ... For the headaches: If Ibuprofen IB or Exedrin Migraine don't help, go with something different - maybe to a pharmacist. ... For the depression: I try to mentally pull myself out of this. I personally do not like drugs. But I hear some of them work for others. You need advice for other things - let us know. We are glad to help, and better yet - understand more than any doctor would! Note - others will have some other advice. Don't worry if some things don't work for you. Nearly everyone here has WN, but not all of us use the same things to help us out. Some things work better for others. We just keep trying different things and update the others on how things work out. Stay in there... we are all here for each-other, remember. Whether it be for help with symptoms, to talk, or even to vent some stress.
Last Edited By: duck19
05/08/09 14:36:29.
Edited 2 times.
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frostyandbob |
Relapse | ||
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I was stricken in 2003. I found this discussion forum in 2006. I have relapsed critically twice. I continue to seek good doctors who
comprehend. Hello to old friends here. Hello to new friends here. I am sorry that our numbers continue to indicate the WN presence and that some, such as
myself have not recovered. But, I am able to rise every morning, and I am so happy for that. Life does go on...only differently. Oh yes, and I still say cat
when I mean dog!!!
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