Unexplained chronic fevers

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spaztick
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Date Joined Oct 2006
Total Posts : 851
   Posted 9/7/2007 10:56 PM (GMT -7)   
Hello Everybody,
 
I'm from the fibro forum, and have also visited the lyme disease forum -- and now I'm here to ask a question.
 
I currently suffer from chronic high-end low-grade fevers (not over 100.9 F) -- since the end of 2005.  Prior to that, it was intermittent low-grade fevers.  During 2000, I was very ill off/on due to contracting severe "flu's" and in Feb/01, I was unfortunately unable to continue working full-time due to chronic pain and chronic fatigue.
 
During 2006, I saw many doctors because of my declining health.  The infectious disease specialist said "The fevers are just part of you."  He also said that he didn't think the cause of the fevers was infection, which left either cancers or an auto-immune disease.  He said my blood work for CRP and ESR were normal so that meant not lupus or TB.  He never did a medical report to my family doctor.  My ANA was negative the last time it was checked, but I don't recall when that was.
 
Fast forward to this year...I asked my family doctor which auto-immune disease he thinks I have and he says, "I dunno, maybe lupus."  I don't know why he didn't do any further testing, aside from the fact that he has unfortunately become lazy and less interested.  He is also my Mom's family doctor, and she agrees that he has changed this year.  I have seen this doctor for eight years, and I don't know what has happened to him since he came back from his sick leave late last year.
 
I recently read a web site about lupus which listed the symptoms, and showed my husband, and he said, "Oh my God, you have lupus!"  I said, "Not necessarily, but I do now know that fibromyalgia does not cause chronic fevers.  Therefore, since my doctor has dropped the ball, I'm picking it up.  At least I'm trying to on the days I have energy, and H/W has definitely been great to me and for me.
 
My question:  Is there anyone out there who suffered from unexplained chronic low-grade fevers prior to their dx of lupus, and does anyone out there who carries the diagnosis of lupus experience chronic low-grade fevers, or do you just get fevers with a flare?  Also, any recommendations? 
 
I didn't want to list a bunch of my symptoms because I didn't want to do a super-long post -- like I did in the lyme disease forum.  All I can tell you is that I am mostly housebound due to my illness(es), generally 3-4 good/bad days per week, a good day being that I'm not bedridden and/or able to get out of the house, and it's been this bad since the end of 2005.  You can see my official dx's in my signature.  Thank you very much for reading my post.  I hope you're having a good day.

 ~ Carrie J
 
Fibromalgia (dx'd 2000 by GP; 2002 by Rheumy); Chronic Pain/Degenerative Disc Disease: C-Spine, T-Spine, L4-5; Sacroiliitis; Interstitial Cystitis (Rx Elmiron); GERD (dx'd 2004 by Upper GI Series); IBS; Depression; Essential Tremor (dx'd 2003 by neurologist) 
 
 


spaztick
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Date Joined Oct 2006
Total Posts : 851
   Posted 9/7/2007 11:07 PM (GMT -7)   
PS - The extreme fatigue is so bad on some days (more often than I would like) that it's too difficult to stand and properly brush my teeth so I just rinse the brush, and walk back to bed, where I do a semi-job; I barely have the strength to feed the cats; and making a meal means getting out the peanut butter, putting it on a piece of bread, folding it together, and going back to bed to rest and eat my pb and bread. It's really quite gross. I am not exaggerating or looking for sympathy, I'm just saying it is way beyond the fibro fatigue. Once night, my husband asked me give him my glass of water for him to refill, and as I tried to hand it to him, he said, "Look at you, you poor thing...can barely lift your glass."  Today, I'm obviously better because I can actually type, but not well enough to tidy or get out of the house...everyday is unpredictable.  Does anyone get grossly fatigued like this on a bad day???
 ~ Carrie J
 
Fibromalgia (dx'd 2000 by GP; 2002 by Rheumy); Chronic Pain/Degenerative Disc Disease: C-Spine, T-Spine, L4-5; Sacroiliitis; Interstitial Cystitis (Rx Elmiron); GERD (dx'd 2004 by Upper GI Series); IBS; Depression; Essential Tremor (dx'd 2003 by neurologist) 
 
 

Post Edited (Carrie J) : 9/8/2007 12:12:38 AM (GMT-6)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/8/2007 6:29 AM (GMT -7)   
I know that low grade fevers are part of lupus. Also please note a fever is considered low-grade until it hits 101.4 (or higher depending on the doctor) by the medical community and they don't even count it as a fever until it hits 100.4. Yet I know darned good an well my temp when not ill runs a degree or so lower than the supposed normal. That is the huge thing. I would recommend a rheumy visit. Simply put if your rheumy does not run tests and your primary is being lazy then you need new doctors. Mayhap your husband could go in with you. I suggest having a screen for every possible cause of your symptoms and know that it is possible more than one problem is causing them. Also note depression adds to fatigue and the kind of pain you appear to be dealing with can cause depression in and of itself. So have a psych evaluation done as the doctors are likely to try and claim depression unless you have seen someone qualified who rules it out, treats it, or declares that you aren't depressed enough to cause your physical symptoms. Also be aware you primary dr could be suffering depression- ironically he will likely not realize it and/or not seek treatment. Depression is common after illness, especially the flu. I suggest you insist on better treatment. Also it looks like a new round of testing is in order. Your rheumy should specialize in lupus/autoimmune issues beyond arthritis/RA. A lot of rheumys will not know enough about lupus to dx or tx properly. Good luck. Others will come with other suggestions. Make a list and take pictures and take your hubby with you. Often the presence of another family member will force the dr to listen. If not hubby then mother.

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<SPAN style="FONT-SIZE: 10pt; COLOR: blue; FONT-FAMILY: Verdana">Tx: plaquenil, Enbrel, Celebrex, <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:City><st1:place><SPAN style="FONT-SIZE: 10pt; COLOR: blue; FONT-FAMILY: Verdana">Darvocet</st1:place></st1:City><SPAN style="FONT-SIZE: 10pt; COLOR: blue; FONT-FAMILY: Verdana">, Singulair, Flexeril, Baby Asprin, (soon to be d/c-Relpax,)Prednisone<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>


Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 9/8/2007 7:49 AM (GMT -7)   
Hi, I thought my lupus thought I had lupus & fibro, but now I'm not so sure if he thinks I have lupus. But anyway, for at least 6 weeks now, i've had low grade fever every day ranging in the 99. (point something) to 100. (point somethings). At least 6 weeks that I know of. I had gone to a walk in medical center for severe nerve pain from what I assumed was another disc herniation and my temp was 99.2. The week before i noticed i was feelign awfully hot lately (which is very unusual for me being that I'm always freezing, even in summer). So the week before I took my temp and it was 99.1. My entire body feels very hot, my face & neck are always hot & red, and Im actually sweating here & there which ive not done in several years. It doesnt come & go, it's constant. Welll my herniation resolved on it's own over 2-3 weeks and I stll have the fever. Mind you in early July I started having joints pains again in my ankles, hips, spine, neck, one shoulder and both hands. So I saw my rheumy early last week especially b/c my hands are killing me & its hard at work. He looked at them & said he saw no inflammation. I also mentioned this low grade fever, but he just went "mhmm, mhmmm".  But he sent me to have lab tests again (ANA, RF, cbc, esr, lyme titer, and some others that I dont know or couldnt read). The lab told me it would take 24-48 hrs for my doc to get the results (which would have been mid week due to labor day). Well, the doc office hasnt called me at all (so maybe nothing showed up on the tests). But I am still having this fever which is driving me nuts because I am not used to feelign hot all the time. My normal temps the past 4 yrs or so have been in the 97's, sometimes high 96's. I still don't have any answer to mine or even why I have all this joint pain. But I just wanted to respond to your post because I have something a bit similar to you.

hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/8/2007 8:54 AM (GMT -7)   
Carrie, I've talked to you in the CFS forum and just wanted to say that I'm glad you stopped by the lupus forum. I agree with you from reading all your symptoms that you have a lot of lupus symptoms and that I visit to a really good rheumatologist who specializes in lupus would be a good idea. For a long long time I had almost daily low grade fevers that made me feel terrible. It wasn't until I was put on prednisone that I stopped getting them so frequently. I still get fevers, jut not as often.

I really do understand what you are saying about the fatigue and I think a lot of others here understand the kind of fatigue you are talking about. I think healthy people have a hard time understanding the severity of the kind of fatigue we feel. When most people hear us say we are fatigued they think we are just tired and need rest. This kind of fatigue is completely debilitating.

Hang in there and keep looking for answers. I'm sorry your doctor has lost interest - something must have happened with him. Please continue to post here if you want to and ask any other questions you have.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 9/8/2007 12:09 PM (GMT -7)   
Carrie,
I just wanted to say that I had low grade fevers for a year before my lupus diagnosis. I still have them. They come in spurts of two to three or four weeks and then I have a week or so off if I am lucky. This last time I had fever (a week or so ago) they did blood work to look for inflammation and everything, including my ANA which had previously been raised, came back normal. I have no idea. My rheumi still thinks it is lupus, or at the least undifferentiated connective tissue disease. I just can't put it all together right now.

I am sorry that you are going through this and you will be in my thoughts and prayers. You are not alone in your symptoms though. The weakness and fatigue I have felt...in all reality I thought I was going to die.

What a wonderful husband you have to treat you so kindly. That is a a true blessing.
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 9/8/2007 2:12 PM (GMT -7)   
Thank you so much to Everybody who responded to my post.

I will post later when I'm feeling less fatigued.
 ~ Carrie J
 
Fibromalgia; Chronic Pain/Degenerative Disc Disease (back & neck); Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed auto-immune disease


Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 9/9/2007 6:06 AM (GMT -7)   
I think most autoimmune diseases can cause the fevers and fatigue. Mine come and go with disease activity. My advice is to see a rheumatologist and let them piece everything together.

Take care!
Jeannie ~
   Mom to Ty (4 yrs old)
   and 3 Shelties
 
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 17.5mg (RA); Metanx 5mg (RA); Remicade (RA); Lunesta 2mg (as needed)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/9/2007 11:06 PM (GMT -7)   
Gagirl1 said...
Carrie J,
Document all medical problems/symptoms, track your fevers, both the ones that come and go, and the ones that stay for a while. The average patient with lupus and other auto-immune disease, see about 4-6 doctors. If you have an auto-immune disease, it will eventually flare and show up in the labs. I am sorry that you are so fatiqued and not getting the answers that you need. Maybe your husband or someone familiar
with your struggles can go with you and be a voice for you. My brother has Chron's disease, ran a low grade fever while in the hospital for three weeks before being diagnosed in 1991. Take care.
GAgirl

SLE. Sjogrens, Osteoporosis, Herpes Zoster-Shingles, Depression, Cataracts, Fractures

Medications -Too many to list!


Moved for GaGirl - Was posted in the wrong thread

spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 9/19/2007 4:49 PM (GMT -7)   

Hello Everybody,

Here's my upddate:  I saw my family doctor last Friday, and politely mentioned that he had previously said that the auto-immune disease he suspected I have is  lupus.  He mentioned that my blood work done awhile ago showed some abnormality, I think something about smooth muscle (?).  He said that he would order some more blood work now rather than waiting to see a rheumy.  At the end of the visit, I again asked if he believed something else was going on besides fibromyalgia, and he said, "Yes, and that's why I'm ordering the blood work."

The blood work he ordered:  Sedimentation Rate (ESE); anti-nuclear antibodies;  CBC (cell count); anti-mitochondrial antibody; anti-smooth muscle antibody; anti-DNA; VDRL (Vibrio); LDH (lactic dehydrogenase); and Albumin...

I was so happy that he ordered these tests, and it has renewed my confidence in him again.  I know you folks will understand that I'm hoping something shows up in my blood work that will explain why I have been so sick for so long.

My question today is:  Should I wait for a flare before doing the blood work (ie- extreme fatigue, fever, more pain, etc.)?  My husband said that it might be a good idea, but he further said that I'd probably be too weak to get out of the house when I'm in a flare, which is true also.

I want thank each of you who reponded to my post of Sept 7th/07.  The lupus resources on H/W, and the good folks on the lupus forum here have given me the strength and courage to more aggressively puruse my health issues with my doctor.  Thanks again. 


 ~ Carrie J
 
Fibromalgia; Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed auto-immune disease...
 
If only I had a brain...I'm off to see The Wizard!


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/19/2007 7:08 PM (GMT -7)   
Hi Carrie,

I hope someone else is more knowledgeable about whether to wait or not to take the tests. I've wondered the same thing. One thing I worry about in waiting is that the doctor might think I didn't care enough to get the testing done right away. I like him to get the results while he still remembers the visit. But hopefully someone else will know better how to handle it. How often do you flare???

There is a good website at www.labtestsonline.org if you'd like to look up your lab work. It doesn't have ALL the anti-body tests, but it does have some.

I really do understand you wanting to get to the bottom of things. I did get some help and a couple docs have dx'd me with SCLE and UCTD . . . so even w/o positive ANA, they are treating me for auto-immune connective tissue disease. They've only tried the ANA twice, but they are sure that it is auto-immune even w/o the positive blood work. I am positive for hashimoto's (autoimmune thyroiditis). So as long as they treat your symptoms it will be a good start.

I hope you'll keep us posted.

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 9/20/2007 8:06 AM (GMT -7)   
I'm not familiar with all of your tests however most doctor's say that it doesn't matter whether you are or not in a flare with what your lab results do... I'm not sure either way. I do know there are members here who have had worse lab work when they were feeling good versus when they were feeling ill which is peculiar. I think out of the ones you mentioned (again I'm not sure about all of them), the sed rate and anti-dsDNA will most likely be elevated when you are having symptoms/flaring. I know that a lot of rheumys look to the anti-dsDNA when they are monitoring the disease so thats something to remember. My dsDNA has never been positive though even when I'm flaring. Do you know if he is checking for any other ENAs related to Lupus (SSA, SSB, Anti-Sm, etc)?
"Des"
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Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
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monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 9/20/2007 11:04 AM (GMT -7)   
Hi there,
I went in with my last fever aches flare etc, and had all the blood work drawn, only to have it all come back perfectly normal. My rheumy said it didnt change the treatment or the dx, but it sure is confusing. So if it all comes back normal, don't feel too discouraged.

Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 9/20/2007 12:12 PM (GMT -7)   

Hi AlwaysRosie & "Des"...

I'm glad to hear I'm not the only one who has concerns about when to get their blood work done.  AlwaysRosie, I know what you mean about wondering what your doctor may think if you don't get it done right away.  Thanks for giving me another web site to check the blood work/labs.  I did look up each of these tests online.

I read that the anti-nuclear antibodies and the anti-DNA are SLE tests.  My doctor said he was ordering "some other things" too.  The LDH test is to determine cellular or tissue damage.  The anti-mitochondrial test is an Immunology test; I read it's a test for chronic cirrohosis (?).  Interestingly, the Vibrio test is for syphillis, liver damage, brucellosis, etc.  I read that people with lupus can get a false positive result for syphillis.  The albumin test is for heart attack, liver disease, and tissue changes.  Of course, being a layperson, I don't know exactly what all of these tests mean, but I am pleased that my doctor is trying to find answers, too.

AlwaysRosie, my Mom has Hashimoto's thyroiditis, too.  It is controlled with her thyroid med, but she does have to go for  blood work often to see if the prescription dose has to be changed.  Is yours controlled well with the thyroid medication?  That's great that you are being treated for UCTC & SCLE even without positive test results like ANA.  I told my doctor that about 1/3 of those with lupus have a negative ANA (I read resources on H/W, thanks).  He didn't include the ANA in my labs this time, but I'm not sure why.

You also asked how often I flare, and that's hard to answer because for the past over 1 1/2 years it seems too often.  I asked my husband this question today because I get quite confused sometimes, and I am too often too weak (muscle weakness, extreme fatigue) to track my symptoms in writing like I used to be able to.  I said to my husband, "Isn't it maybe three days per week?" and he said it's more like four days per week.  On an "OK" day like today, I'm able to get on the computer and type.  But when I tried to empty and re-load the dishwasher today (after two cups of coffee for energy), the plates, bowls, etc. felt like weights, and I started to get shakey in the limbs and too weak to wipe the counters and do a good job.  I am very happy on the days that I am able to get out of the house on my own and run errands, or pick up some things from the drug store (it seems that these days only happen about 2-3 days per two weeks).  I'm so sorry for being long-winded; I hope you understand.

"Des",  That's good info for me to know, thanks.  I have read a bit about the lab work that is normally ordered for lupus (thanks to the lupus resources that the forum moderators post & lupus resources on H/W), and your question about checking for any other ENAs related to lupus like SSA, SSB, Anti-Sm, etc. is very good because he didn't order any of those.  I guess right now it's just one step at a time, but hopefully my doctor will treat my conditon based on symptoms and maybe a low dose of prednisone and Plaquenil may help my extreme fatigue, fevers, and improve my ability to live more normally.  A client of my husband has SLE, and my husband spoke with her at length about me, and she actually offered to give me some prednisone and Plaquenil.  But I wouldn't want to do that right now; it wouldn't be right, but I am going to phone her to thank her for her concern (my husband said that she would like to talk to me).

I'm sure everyone here understands how I'm feeling right now, suspecting and knowing something is not right with my body, but not being officially dx'd and feeling in the dark (except for the official dx's in my signature).  Life is much easier when we're healthy, and everyday activities like dressing, bathing, tidying, cleaning, doing chores and runnning errands feel like normal things one has to do daily vs. feeling like "achievements" for me and so many others who are chronically ill.  I feel thankful, though, that I used to be a healthy, functioning, working individual vs. a person who is born with a disabling conditon.  Does that make sene?  I read The Spoon Theory, and I really loved it.  After reading it, I sat back and said under my breath "Wow."

Thank you so much AlwaysRosie, "Des", and all of you who took the time to help me.  I really appreciate it.  For those of you who get chronic fevers or low-grade fevers, do the meds like prednisone and Plaquenil help with the fevers???  Neither Tylenol nor Ibuprofen help lower my temp, but I do find that resting and wrapping a frozen blue ice gel pack around my head helps.  Anyone who can help shed some light???


 ~ Carrie J
 
Fibromalgia; Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed auto-immune disease...
 
If only I had a brain...I'm off to see The Wizard!


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 9/20/2007 12:22 PM (GMT -7)   
Oh, I forgot something (that's normal, right?)...Monkey Me: I too had c. diff. which you had in 03/07. I was in hospital for five days on IV. I'm wondering how you contracted it??? I had my appendix out in July/03...a simple thing I thought. Eight weeks later, I was hospitalized for ten days on IV abx due to an abdominal abscess, then I was still sick and got sicker, then in hosp. again in Oct/03 w/ c. diff. The hosp. Dr.'s said the c. diff. was due to being on abx, while my family doctor said it was an infection contracted from the hospital (dirty surfaces, etc.). It took me six months to recover from all of these infections. I haven't come across anyone else who had c. diff. online (aka pseudomembranous colitis). How did you contact it, if you don't mind my asking??? Thx, Carrie
 ~ Carrie J
 
Fibromalgia; Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed auto-immune disease...
 
If only I had a brain...I'm off to see The Wizard!


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 9/20/2007 12:31 PM (GMT -7)   
Oops again, Monkey Me...I just posted a question to you then I saw your new post! Thanks for your info about the tests coming back normal. I haven't done the tests yet, and I have been thinking that I will be discouraged if they come back normal. It is all so very confusing, being sick and so weak and fatigued, feeling like you're probably dying of some sinister disease. I noticed you get migraines, as well. I was first dx'd w/ migraines when I was 20 yrs old, and I used to get them monthly before my period, or just at the start. I still get mild to bad headaches occasionally, but I seldom get migraines anymore (I do have an Rx for sumatriptan on hand). I have wondered if being in perimenopause/hormonal changes has lessened the migraines (I'm 45 yrs old). Maybe for some it does. A friend of mine who also has fibro and is in menopause gets more migraines now, so as we all know, everyone is different...
 ~ Carrie J
 
Fibromalgia; Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed auto-immune disease...
 
If only I had a brain...I'm off to see The Wizard!


monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 9/20/2007 12:50 PM (GMT -7)   
Carrie
I was just laughing at myself as I realized I answered your post twice with virtually the same information....good grief. I am not doing well right now so I have an excuse right ?

I am unsure how I came into contact with the actual c. diff spores. It was either in the hospital while I was having surgery (appendix) , or at the nursing home where I worked. No way to tell for sure as both of those types of facilities are FULL of the spores.

I did not come down with the actual infection until I took Clindamycin for a dental infection. I have been sick since early april with c. diff and it is just wearing me out.

I have been on vanco tapers and have relapsed numerous times.

Can you tell me what finally ended the infection for you?

I am just so darn exhausted. My GI is less than helpful. What a nightmare! I really want to get the word out that the latest medical journal studies have shown that drinking a probiotic drink such as Kefir while taking antibiotics is of MAXIMUM importance in preventing c. diff. It is highly important for us Lupies as we are in and out of hospitals and doctors offices where we can easily pick up the spores. Also, our immue systems leave much to be desired in fending off infections.

Making a daily habit of drinking Kefir or taking probiotics is really important, and something that will remain a part of my life post c. diff.
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/20/2007 12:56 PM (GMT -7)   
Hi Carrie,

For me, the fevers have never totally gone away...I get one at least every 2-3 weeks. They are an indication of how I'm doing as far as taking care of myself, etc. I can go a while without any, but then if I'm doing too much I will get late afternoon or early evening fevers fairly regularly.

All the meds help, but they are designed to control big inflammations. (I think of these as the meds that keep me on the right road.) They do control regular inflammation, but the little day-to-day things can still cause minor day-to-day inflammations & these produce fevers. That's where an extra nap or ibuprofen (or whatever your dr has recommended for you) wrok to knock the fevers out. (I think of the naps/OTC meds, daily sleep & good food as the things that keep me in the right lane.)

Remember that even the stress of an extra errand a day, that your mind & emotions don't believe are stressful in any way --- these can be enough to trigger a temp.

I hope that helps a little -- not every temp means a big problem.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
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monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 9/20/2007 12:58 PM (GMT -7)   
Lynwood
I know your post was directed to Carrie, but I have a question on your thoughts about inflammation. I too deal almost constantly with fevers like I mentioned before. But blood work looking for inflammation came back normal. So if its coming back normal on inflammation, I have to wonder what the heck is causing my fevers?

Any thoughts?

Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/20/2007 1:16 PM (GMT -7)   
I think we have very mild, intermittent inflammations/fevers that are just not significant enough to affect our bloods inflammation markers.

Kinda' like a little mosquito bite that is annoying for an hour or two versus being attacked by a horde of yellow jackets that put you in the hospital. Or like dropping a plate on your toes versus accidentally cutting off a toe....

These little inflammations/fevers happen when I do stupid little things that make me "change lanes" -- not big enough to be called a flare that "bumps me off the road".

Try taking it a little bit easier. A little less stress, fewer errands, etc. I limit outside-of-the-house things to one per day. Like if I have lunch with friends one day, that's it for the day. The errands take one day, even if the actual run-around time is 1-2 hrs. One drs appt a day means no errands or restaurants that day....purposely take a nap in the afternoon...

I think most of us should be able to figure out how much we have to slow down to avoid these fevers...it's just SO HARD to slow down to that point, esp. those w/children or those who are still trying to work.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 9/20/2007 1:33 PM (GMT -7)   
Oh I so agree. This current bout of fever came after a day of feeling INCREDIBLE!

I felt so darn good. I got up, didnt want to waste a second, hopped in the car to visit my sis, begged her to go thrifting, which we did for hours, helped her load and unload and set up a bed for her daughter.

Helped her clean up daughters room a bit.

Ran home, took dog to vet appointment, came back, went to wal mart to get needed items, went to drugstore to pick up presciptions, went to pawn shop to pay on my guitar using hubbys debit card which he gave me to use.

Had wrong pin number.

Hubby not answering phone.

Drove home, got pin, went back, new guy in there, wouldnt let me use hubby's debit at all.

Drove to atm, got cash, went back, paid bill.

Took movies back to Blockbuster, rented more,

stopped at walgreens and picked up a late filled prescription,

went home,

made dinner,

sat down for first time at 9pm.

And when I wake the next day with a fever I am thinking, WHAT AN IDIOT!! Why can I not limit myself? I am like a child stuffing cake and candy into my mouth until I am sick! Did I mention that I hardly ate at all that day? And what I did eat was not good for me? I mean, what in the heck is wrong with me. I have been so darn sick in the past year, that when I get a good day I want to celebrate!

The fierceness of this flare though has scared me. I do not think in the future I will be so careless.

Thanks for your imput, your explanation on the minor inflammations makes sense to me. Its strange how negative bloodwork can put me right back into that vulnerable mindset of "nothings wrong with you, you must be crazy". I was made to feel that for so many years while trying to figure out what was going on.


Thanks again for your comment.

Darlene
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07


Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 9/20/2007 2:35 PM (GMT -7)   
well, last week my joint pains & stiffness started going away & it's pretty much gone now. I feel alot better, and my fever is just about gone as well. I had lab tests done on Aug 31st and have not heard a peep back from my rheumys office, so I assume the tests were fine. So I have no clue why I had fever for several months, along with joint pains & stiffness. I also had some facial puffiness. THat seems to have gone away as well.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/20/2007 4:34 PM (GMT -7)   
I have fevers everyday and have been worked up extensively for it by an infectious disease doctor. The results boiled down to it's my disease causing the fevers. I normally run 97.2 and on a daily basis I'm at 99.5 or above. Of course doctors do not consider it a fever until it reaches 101.1 and above. I have several days per month when my temperature is that high or higher.

I of course have the MDS in addition to my lupus so that gives me double the chances of having my disease affect me with temps. I ran pretty high daily when I had my bad case of C-diff, which they figured I picked up being in the hospital on IV antibiotics.

So, I just believe that we're prone to running temps with the lupus as we've always got some form of inflammation in our bodies.

Hope this helps some.

Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/21/2007 8:44 AM (GMT -7)   
I agree with Monkeyme about the Kefir . . . . it is a really inexpensive way to keep lots of gut issues in check. It is even agreable for lactose intolerant people. Once you find a source for your Kefir grains you can make all the kefir you need. I put my grains (they look a bit like cottage cheese) in a jar and add milk. Let it sit for 24 hours, strain it and then you have Kefir. The grains are left in the strainer and you just put them back in the jar and add more milk. Kefir has WAY more of the live culture and more variety of culture than yogurt and is such a bargain. My daughter adds it to smoothies, but I just drink my little glass of it every morning. It tastes like strong buttermilk. If anyone want more info here is a link to just one of many Kefir websites. http://users.chariot.net.au/~dna/kefirpage.html

Blessings!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 9/21/2007 10:48 AM (GMT -7)   

One thing that really frosts me is that too many doctors, including specialists, forget that AI diseases, although supported by labs, are primarily a clinical diagnosis.  An experienced rheumatologist can depend upon his/her judgment on whether a person has or does not have AI disease.  Some AI diseases are easier to recognize than others, but as a class, these diseases are very difficult to diagnose.  Hence, some number that comes back from a lab should not be diagnostic.  I've been told that a negative ANA does not exclude lupus; just that it possible, and in some cases highly probable, that ANAs fluctuate as much as the wind--they are a very inaccurate measurement of disease activity.  All they really show is that your immune system is malfunctioning in some way.  Same thing with rheumatoid factor, and I'm sure a whole slew of other types of labs.  Based on your symptoms, I would recommend you see a rheumy.

 

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan

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