question about fevers

    • Anonymous
      January 3, 2007 at 4:02 pm

      Hi All: Happy new year and I hope it brings better health to all. I have written about fevers before but am frustrated and looking for answers or, lacking that, some support. When I was in rehab I began to have high fevers (102.5) every night, but never before 5 pm. I went through all the tests for infection which showed nothing. When I got home I had the same deal only the fevers were lower 99-100. Again all the tests and nothing. All the doctors told me it was not likely GBS but had no real ideas. It went away for a year and then returned this Oct and this week I had them every day for anywhere from 10 minutes to 8 hours, again never above 100. The thing is that when they come I feel pretty sick and the fatigue is multiplied-had to stay in bed for a whole day and today still shakey-you know the feeling of waking up tired. My doctor wants to do a ct of my chest now looking for cancer and thinks this is the best test to go to next since nothing has ever shown up. I prefer not to as it is expensive and frustrating to have one more test, but I am feeling discouraged by this recurrence and the fatigue it brings. Anyone have fevers like this and receive any help? Any ideas welcome. Thanks, Jeff

    • Anonymous
      January 3, 2007 at 4:19 pm

      Hi jeff, fevers with me are a normal thing, mine are usually low grade except for last month when it wouldn’t go below 102 for several days. if i’m not mistaken it could have something to do with the inflamation that is going on in the body. that is what i have been told when all other blood tests were neg for infection. i have had a few chest cts done which did show a suspicious spot, and that is around the same time i started with the regular low grade temps, except the hospital dismissed the connection for whatever reason. i am due for another ct later this month. i think it is a good idea to get the ct, just to be on the safe side, you will relieve alittle stress if you have it done. the only other thing i can tell you is to drink alot of filtered water and real juices, stay well hydrated. take care.

    • Anonymous
      January 3, 2007 at 7:03 pm

      Hi Jeff,

      I have fevers all the time too. Usually low grade. My doc sent me to a hematologist a few years ago and he said it all related to inflammation and they wrote it off to me smoking cigarettes. I wouldn’t let my PCP doc do a chest xray as I didn’t want to know. You gotta love that denial. But i truly believe it is GBS related and they just don’t know enough about it yet.

      I just went through a day like you described… I stayed home today and slept all day and am just now up and feel much better. I believe I had fever off and on today. Going to get some dinner (didn’t eat all day) and then back to bed and to work tomorrow.

      Let us know how your ct goes.

    • Anonymous
      January 3, 2007 at 8:05 pm


      Ben has the opposite issue. His temperature is usually around 96.8 rather than 98.6. I’m used to mine being low, but he’s got me beat!

      I hope you find out what’s wrong soon!


    • Anonymous
      January 3, 2007 at 9:28 pm

      Hi Shannon: Interesting about Ben. When I am not having a fever my temp is sometimes 96.6 or even lower. Not sure what that means. Thanks all for your comments. Jeff

    • Anonymous
      January 4, 2007 at 1:30 pm


      Boy, was I out of it yesterday… Today I see a post regarding White Blood Count. That was why my PCP doctor sent to me to a hematologist – along with fever.

      With my current insurance at work, I have a $1,500 deductible so I won’t be having any tests done any time soon. Let us know about your ct results.

    • Anonymous
      January 4, 2007 at 3:56 pm

      Ever since I had GBS I routinely measure a temperature from 99.4-99.1, depending on time of day, even when I feel completely normal (I used to always be a 98.6 girl). It could have to do with the GBS – I can’t imagine another reason why it would change like that, otherwise.

      I wonder if the return of your fevers is your body’s way of telling you to slow down? Try to rest up a little bit more – have you been under more stress or pushing yourself lately? I’m glad the doctor is checking all the possibilities, but it can’t hurt to try to take it easy.

      Good luck with your testing!

    • Anonymous
      January 4, 2007 at 6:38 pm


      Just wanted to say that me, I would have every test going – as long as it didn’t hurt.

      It’s intriguing that Jeff’s high temperatures only happen after 5 pm. It would make me wonder whether you are simply doing more than your body wants you to and are tired/fatigued. I haven’t a clue – it just popped into my head. I’m the opposite though, if I get tired I get cold.

      Also, if women get hot flushes because of hormonal changes, I wonder if there are hormonal things going on.

      Bet of luck anyway.

      God bless

    • Anonymous
      January 4, 2007 at 9:21 pm

      I don’t have the problem with low grade intermittent fever, but I wonder if this is another manifestation of the autonomic nerve problems caused by GBS or CIDP….

      I know that I do sometimes feel hot or cold, regardless of the actual surrounding air temperature, and that this is my body’s inability to control my body temperature.

      I wonder if the actual fluctuation in body temperature is similar?


    • Anonymous
      January 4, 2007 at 9:32 pm

      Hi Suzanne: I wonder that too. I have hot flashes at night too with or without fever ever since GBS-in the hospital they would have to change my sheets because they would get so wet from my sweating. No doctor I have ever talked to has ever said there was a connection to GBS but insisted there must be an infection some place even though they could never find one. But I think hearing from you all there must be a connection. Thanks everyone. I am still unsure about getting the catscan but if I get another round with the fevers any time soon I probably will. Hopefully they will go away again but I feel like my residuals have gotten worse not better as time goes on. Today I slept for almost two hours and still feel tired. As to all who suggested a connection with doing too much there might be some truth to that. Will keep it in mind. Best to you all, Jeff

    • Anonymous
      January 7, 2007 at 4:01 pm

      I have had Rheumatoid Arthritis for about 18 yrs now and one of the reasons that my doc kept testing til she got a positive was because I had consistent every day low grade fevers, especially when it was cold.
      She told me when you have fevers, your immune system is telling you that either you have an infection of your immune system is not working right.
      Anyone with GBS has that problem also. It is Autoimmune which means your immune system is working against you rather than for you like normal.
      Rheumatoid Arthritis is Autoimmune also, thus causing the fevers.
      If the docs cannot find any infection, they will usually tell you its your immune system and they’re probably right.

    • Anonymous
      January 8, 2007 at 8:20 am

      Yes I think that must be right. I don’t know exactly what it means healthwise but it makes sense that it is connected to the autoimmune disease that GBS is. The difference from RA is that RA continues when GBS is an acute disease so it must mean residual damage to the immune system. Thanks for your answer-it gives me something to work with. Jeff

    • January 12, 2007 at 11:08 pm

      I’m a freezer as well. It can be 80 outside and I am an ice cube. I havent taken my temp so I dont know what it is now (after gbs). Other times I get so hot I feel like I will spontaneously combust. It feels as if the heat starts somewhere inside of me and gets hotter and hotter until it finally just stops. And I am freezing again. I never sweat during the hot episodes or flush. But boy do I shiver and chatter when I am cold!

    • Anonymous
      January 13, 2007 at 8:08 am

      There is a syndrome or condition that is called “Phantom Fevers” and can be caused by certain psychotropic and pain medications. It has something to do with the brains ability to process or not process certain signals from the body. The easiest thing for it (brain) to do is raise the core body temp to ‘get your attention’.

      We have a child at school who will break out in these fevers with NO OTHER SYMPTOMS or indications of an illness. He has been checked out by every doctor thinkable and no conclusions. So we have to keep him in school as long as his ‘fever’ is under 102.5.

      I hope you get enough information to ease your worries.


      PS. Before GBS I was 98.6-99.0 normal, now I run 96.2-96.6 so 99.9-100.0+ is a high grade fever for me. Try explaining that to some of the doc’s in this world!!!

    • Anonymous
      February 13, 2007 at 6:24 pm

      I’m new. I’m 38 y/o with 2 young children. This is my 1st post. Dx GBS 1/8/07 TX with ivig(narrowly missed vent. I’m a Family Practice Doctor and Dx myself and 1st 2 neurologist didn’t believe me and called it Migraines/Virus. On demanding a 2nd NCV test and being paralyzed legs, arms, part of face with severe spasm pain- they finally got excited and tried the ivig with good results. I’m now home and ambulatory but very weak but improving daily. I like you have had fever for 6 weeks(chills, malaise, shakes)daily. I had a huge negative infectious disease w/u and rheumatology w/u was positive only for Sjogrens(dry mouth). The neuroligist best explanation is continued viral syndrome. The rheumatologist said autoimmune (part of the GBS). The immunologist said could be from mylin breakdown. Also may be from autonomic instabilty(part of GBS) which also goes alone with my intermittent increased heart rate. The rheumatologist placed me on prednisone(steroids)which the neurologist disagreed with and is now tapering. They basically don’t know and all agreed I would just have to wait and see. I hope this gives you some ideas to discuss with you doctor. Make sure he has ruled out all infectious treatable conditions, and a CT(abdomen, chest, and pelvis) to rule out lymphoma. My good news is that for 4 days I have been without fever. I hope you start feeling better. Dr. Shawn

    • Anonymous
      February 13, 2007 at 6:55 pm

      Thank you Dr. Shawn and welcome to the forum. I hope it helps you work with your recovery process and that all goes well for you. I continue to struggle with more pain and weakness than previously but have not had a fever since December, so hoping it is gone. Unfortunately it tends to return every few months for no apparent reason. I have had all the tests except the CT which my doctor wants to do but I am tired of tests for the time being. I think it must be an immune system thing and one neurologist told me to expect it to return, though he still suspects some kind of infection. Thanks for all your input-it has given me somethings to consider. Jeff

    • Anonymous
      February 14, 2007 at 12:14 am

      Thank you Jeff for your help. It does help to talk to people who have been through same. I’m sorry that the fevers might recur. Does really worry me( was hoping 4 days maybe out of the woods). Since your fever is gone now doubt CT worth money but if you have insurance worth a peace of mind. Test just involves drinking lemon/sweet yucky drink(barium), an iv, and about 20 minutes in the scanner. Thank you Dr. Shawn

    • Anonymous
      February 14, 2007 at 4:17 am

      Welcome Dr. Shawn! We’ll be delighted to have your input from your personal experience and your training. DocDavid will probably be delighted to have a collegue to share “house calls” with ~ ha!

      I cast my vote with the immunologist ~ mylin breakdown. I always caution “give your symptoms some time” before you jump into other diagnosis or surgery. Your nerves tell “everything” in your body how to function. And when that communication system gets “messed up” things aren’t going to function “as usual”. And as the healing takes place, I’m sure the messages will be “weird” until the nerve (s) is healed and speaks “plain English” again 🙂

      I suffer with the cold thing. My “normal” temp is 97.8 but this winter I’ve been running 96.8. How I love my hot showers/baths 😀 It is rare that I have a hot flush or sweats now, but I believe that is because some healing in that part of my system has taken place.

    • Anonymous
      February 15, 2007 at 10:54 pm

      Thank you Jeff and Judi Z! Dr. Shawn

    • Anonymous
      February 16, 2007 at 6:42 am

      Welcome Dr Sawn, good to have you share cybersurgery. I have CIDP and had fevers for many weeks, fully investigated no cause found. I have seen it in rheumatoid and polymyalgia rheumatica so I assume it is part of the inappropriate auto-immune process. Best wishes, DocDavid