Chronic low-grade fevers

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spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 9/10/2007 7:54 PM (GMT -7)   

Hi Pink Grandma,

Thanks for the great info!

My fevers do not decrease by taking Tylenol or Ibruprofen, which is why the doctors know that it isn't caused by infection.  The other things that cause fever are cancer or auto-immune disease (infectious disease specialist told me this).  My doctor believe it is an auto-immune disease, but it is unknown which auto-immune disease.  The weakness and fatigue I experience is very disabling.  I am going to see a lyme disease doctor soon, and I am going to ask my doctor to sent me to a rheumatologist to screen me for lupus.

It's nice to meet you.  Do you ever visit the fibro forum?  I mainly read and post there, as I carry the official diagnosis by a rheumatologist of fibromyalgia (2002).  My GP dx'd me in 2000, but it had to be confirmed by a rheumy.

 


 ~ Carrie J
 
Fibromalgia; Chronic Back Pain-Osteoarthritis/Degenerative Disc Disease; Interstitial Cystitis; GERD; IBS; Depression; Essential Tremor; undiagnosed auto-immune disease


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/10/2007 8:37 PM (GMT -7)   
It's nice to meet you also Carrie. I have posted on the fibro forum a few times a long while ago. I mostly post on the hepatitis forum as I was a caregiver for my husband. But when I saw your titlle (Low grade fevers I just had to post here. ) I was diagnosised with fibro about 3 years ago. I am doing better with it now. I hope you find out soon as to what is causing your low grade fevers. I know that I feel better just knowing what caused mine. I was beginning to think that it was all in my head. :-) Pink Grandma

artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 9/11/2007 9:32 PM (GMT -7)   
:-)  hi, carrie j & pink grandmother, i, too, have cfs & run low grade fevers ....my do says it goes w/this nutty autoimmune problem....nothing ever helpe me w/fevers, still doesn't ;i have had this since 1979 so i know & have most all of the miserable symptoms;i have noticed i have 1 good period per month due to hormonal changes;lasts about 5-7 or 8 days on a good month;i have pmdd, as does my 82 yr old mother....so the hormonal swings are still going on * my doc says it's for life;i never thought i would be glad abt something like this, but it's the only relief i get from this awful weakness, mental confusion, mucous membrane disruption, herpes eye blisters, etc, etc, etc. anyone else notice hormonal link?  i will respond to those of ou who were kind & responded to my poste abt meds for cfs & abt blood clots(dvt) in a day or so;lots to think abt;i thank you all & as a good friend says (((("HUGGERZ")))) :-) painter
i am a freelane artist with too any interests to list here;i believe in kindnes and compassion towards others...and towards animals and all living things...i will respect you if you wil respect me;we are in the same boat, really, we humans..sick or well. if we do not treat one another well, then why are we here?please, please, be kind &  listen....& "walk a mile in the shoes of others"...."i believe in love & live my life accordingly...."(those are some song lyrics  written by Iris Dement & i love it & try to live it as she does);i know i fall short, as do all humans, but it's in the trying that we may find grace & peace.


artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 9/12/2007 5:02 PM (GMT -7)   
:-)  hi, this is artpainter44 & i want to thank all those who responded to my post remeds for cfs & blood clots:victoria, i tried effexor;it didn't agree w/me at all so doc put me on paxil 25 mg per day....helps a little;tried 40 mg. mg also & may go back to that, but stll had panic attacks on 40....hate to go to 60. paxil helps more w/depression, both physical(from chemical brain changes w/cfs) & situational.
    i think my klonipin dosage should be increased....dc doesn't agree;time for new doc, maybe, bu it is so darned hard to find a dr who ill work w/cfs at all here; also, i love your post....thanks again. 
    Kitt, thanks for reply;what sort of info re:inr do u need? my last one was 2.4, previously 1.9....before that it was all over the place...from 1.0 to 8;it is stabilizing now. i had a really big clot behind left knee(still have clots in calf as it is red, warm ....& swells), also clots in groin, gone now, as are clots in thigh;had string of clots removed from same leg;over 2&1/2 ft. long in'71 after surgery (i was on the pill also & no one told me not to do my artwork w/legs crossed in hosp. bed back then....i was 23 so....no support hose, even;noone knew much apparently;almost lost leg...no pulse;emergency surgery, excellent surgeon & i have taken such good care of them since...no more clots until 10 days in bed w/foot of bed raised 3"(now it's about 5&1/2")because of bad flu  cold)l this past feb.28th when these clots developed.
thank yu again for input;i will appreciate any advise you can give as i these do not go away, i may have to have surgery or live w/them....doc says they "probably" won't move;small comfort, huh. best, painter
i am a freelane artist with too many interests to list them all here, tho i like thinking, quantum physics, music, movies, most people, swimming pools, animals, kids, word games, puns(ugh, huh!!), fun, food....esp. italian & mexican;i believe in kindnes and compassion towards others...and towards animals and all living things...i will respect you if you wil respect me;we are in the same boat, really, we humans..sick or well. if we do not treat one another well, then why are we here?please, please, be kind &  listen....& "walk a mile in the shoes of others"...."i believe in love & live my life accordingly...."(those are some song lyrics  written by Iris Dement & i love that song "let the mystery be" that the lyrics come from & try to live it as she does);i know i fall short, as do all humans, but it's in the trying that we may find grace & peace. i also believe "to thine own self be true". i am not as much religious as spiritual ....i believe in God, in a universal , loving force & an afterlife(as well as a "before this life"). we are spirit, energy:that is eternal...as is God, the loving universal God.


artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 9/12/2007 5:14 PM (GMT -7)   
sad   sad :-) nother reply in response to some i got that i want to thank;tinybit, sad & angry(so am i at times tho i try to be positive....it is difficult....but i am still alive & can still paint;find something u love to live for if u haven't,ok?? please....i care. also, i do hear u as i have endured severe anxiety, panic attacks & depression for over 30 yrs....don't think i would be alive without hubby & painting, honestly...take good care all;love your posts(adore rosalyn carter...also jimmy....good folks) thanks again to all of you;i care about you all; i do.my e-mail address is in my profile & i woulld be glad to make new e-mail friends if anyone wante;i promise to respond.  thanks again, painter :-) i just love emoticons, obviously!!!!
i am a freelane artist with too many interests to list them all here, tho i like thinking, quantum physics, music, movies, most people, swimming pools, animals, kids, word games, puns(ugh, huh!!), fun, food....esp. italian & mexican;i believe in kindnes and compassion towards others...and towards animals and all living things...i will respect you if you wil respect me;we are in the same boat, really, we humans..sick or well. if we do not treat one another well, then why are we here?please, please, be kind &  listen....& "walk a mile in the shoes of others"...."i believe in love & live my life accordingly...."(those are some song lyrics  written by Iris Dement & i love that song "let the mystery be" that the lyrics come from & try to live it as she does);i know i fall short, as do all humans, but it's in the trying that we may find grace & peace. i also believe "to thine own self be true". i am not as much religious as spiritual ....i believe in God, in a universal , loving force & an afterlife(as well as a "before this life"). we are spirit, energy:that is eternal...as is God, the loving universal God.


clposton
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/21/2007 5:43 PM (GMT -7)   
Hi everyone.  I'm new to this forum.  I'm doing research on chronic low grade fevers before my dr. appmt tomorrow.  My temp usually runs in the 97's but for the past 6 months its rarely gotten below 99 and typically runs up to 100.9.  Over the past 2 weekends I've run 101-103.  I've just moved to a new town so new doctors.  He gave me a z pack a month ago, and said to come back if my fever didn't go away.  Well I finally decided to go back because now I'm extremely fatigued for a week at a time.  Everyone's posts have been very informative.  I'm glad this is out here.  I now have lots of questions I can ask him!  He'll love that.  Oh, well........

artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 10/21/2007 7:35 PM (GMT -7)   
:-)   eyes hi there, clopston;i hear u loud & clear, truly;u could be me....at least a few you age & still sonetinmes;i have crohns in remission, off & on..gfide..dvt in rtleg..from grion to anklel(attect whole body...autoimmine problem is in the body, NOT inthe  head....falling asleep, sorry;uoma
i am a freelane artist with too many interests to list them all here, tho i like thinking, quantum physics, music, movies, most people, swimming pools, animals, kids, word games, puns(ugh, huh!!), fun, food....esp. italian & mexican;i believe in kindnes and compassion towards others...and towards animals and all living things...i will respect you if you wil respect me;we are in the same boat, really, we humans..sick or well. if we do not treat one another well, then why are we here?please, please, be kind &  listen....& "walk a mile in the shoes of others"...."i believe in love & live my life accordingly...."(those are some song lyrics  written by Iris Dement & i love that song "let the mystery be" that the lyrics come from & try to live it as she does);i know i fall short, as do all humans, but it's in the trying that we may find grace & peace. i also believe "to thine own self be true". i am not as much religious as spiritual ....i believe in God, in a universal , loving force & an afterlife(as well as a "before this life"). we are spirit, energy:that is eternal...as is God, the loving universal God.


artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 10/22/2007 5:06 PM (GMT -7)   
hippimom, hello;this will be brief....was wondering how you are;i haven't been able to post lately(DVT,....lots of big clots, not moving;takes more than that to kill a tough artist!!!!!!!! BELIEVE IT!!) still painting...as best as i can!! been missing you, girl & hoping things are well w/you. well ..you take good care;thinking of you, painter J miss you sad
i am a freelane artist with too many interests to list them all here, tho i like thinking, quantum physics, music, movies, most people, swimming pools, animals, kids, word games, puns(ugh, huh!!), fun, food....esp. italian & mexican;i believe in kindnes and compassion towards others...and towards animals and all living things...i will respect you if you wil respect me;we are in the same boat, really, we humans..sick or well. if we do not treat one another well, then why are we here?please, please, be kind &  listen....& "walk a mile in the shoes of others"...."i believe in love & live my life accordingly...."(those are some song lyrics  written by Iris Dement & i love that song "let the mystery be" that the lyrics come from & try to live it as she does);i know i fall short, as do all humans, but it's in the trying that we may find grace & peace. i also believe "to thine own self be true". i am not as much religious as spiritual ....i believe in God, in a universal , loving force & an afterlife(as well as a "before this life"). we are spirit, energy:that is eternal...as is God, the loving universal God.


kota
Regular Member


Date Joined Oct 2007
Total Posts : 121
   Posted 10/22/2007 6:50 PM (GMT -7)   
Hello all, I am Kota and new to the forum thing's. I have Chronic Fatigue syndrome and Fibro so I run low grade fevers(fever doesn't get too high but I feel all warmish and drained). I also have Neutropenia which explains a lot of the low grade fever. I rarely get a real high fever but iffin my lymph nodes are swollen in my neck(tonsil area) and I feel cruddy, I Know I have a bug. Peace. Nicole redface

clposton
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/22/2007 7:05 PM (GMT -7)   
Very dissappointed w/ outcome of dr. appmt today. He thinks I have an acute infection so he's treating me w/ antibiotics to get me over it. He said, after this, if I'm still running a low grade temp he'll check me out to see what's going on chronically. Go figure. If it hasn't gone away in 6 months after 3 separate courses of antibiotics, I don't think this one will make much difference. In my neck of the woods there aren't too many specialists. but I may go above his head to a specialist, since I don't need his referral to do so.

Shelter
Regular Member


Date Joined Feb 2007
Total Posts : 155
   Posted 10/23/2007 3:17 PM (GMT -7)   
hi,,,
I first was diagnosed with chronic fatigue, back in 1995.. but my doctor said "if he was a single parent with 5 little kids he'd be tired too".
But after a time, my birth mother suggested He run a FULL Blood work up for LUPUS since she had LUPUS..
He did so..
my ANA was positive,
other bloodwork came abck with high Ruemtoid Levels..

My muslces ached, and I fought little fevers all the time....


I had a GP that was trained in South Africa, he sounded like an ENGLISHMAN.. and there they train in both medical and homeopathic feilds...

He suggested I take a really Good Multi vitamin, one that would be asorbed & sued by my bobdy, not like some of the well known brands that as he put it
" make nice bullets in specitc tanks."..

He said the vitamins must be chelated....
He believed that I could ward OFF.. and progress of diseae if my body got heathy...
and so on


Vitamins were expensive, my parents bought them
it was like $100 a month back then 13 years ago

for a long time I took them, and it seemed my endurance & strength would come in waves... I;d have months even maybe a full year of being able to do daily every day routine things.. then I;d have a wave of fevers, aches.. and i;d start loose ground...

if I wehre to describe it in poetic words.. " MY BODY was doing an AREOPLANe nose dive into earth.".. and I could not pull abck & gain altitude..
Physically I have grown accsumted to these waves, of
UPS for months.. and by then you think HEy I'm never gona be sick again...
could be a cold, could be the flu.. but soon you are in that downwad swoop nose dive again , all too familiar".

so I 've thought of it as peaks & valleys...
enjy the view from all angles ? eh ?

All things work together for a purpose...


I knwo pain, I UNderstand weakness.
and the battle with doctors & "the system".
I did remarry later on... and we've both got health issues...

I still get fevers...
and presently Im battling chronic pain... I post there ostly now...
and becaue of chronic pain
I'm sometimes having wafts of depression...


we are human
amazing the body is...

Eat well..
Sleep well
find times for epace & doing something even small
that brings a smile..
JOY can be found even in the desert's of life...
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31
 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal ProblesmFibro Myalgia ,Kidney Stones Esophegial Spasms,( L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease , Bulging Disc, anterolisthesis L4 L5 , caused by osteoarthristis ,  slipped Disc,  bone spurs, causing pinching or pressure  on spinal chord...), ~
 
 
Meds:  Cyclobenziprine, Amitripline, Celebrex , and Robaxacet as needed ,  vitamins  Bcomplex, Calcium&Magnisium,  extra  Vitamin D ,  Rhodiola RX (GNC brand) ,Garlic,  Acidophilous, 
 

 


Sally 2
New Member


Date Joined Aug 2007
Total Posts : 8
   Posted 1/26/2008 3:51 PM (GMT -7)   
Hi eveyone,
Here is the latest..all my tests came back negative..which is a relief..but then what is wrong with me?  So I went to a preventative health/holistic doctor.  I also came upon an article that sacoriltis can be caused from celiac/gluten intolerance.  So I put myself on a gluten free diet.  I also decided that maybe my husband and I were someone contaminating during intercourse so we use protection and finally I started b12 shots. 
AS a result,my pain has gotten so much better I don't have to take celebrex.  I am having a flare again and I am racking my brain trying to figure out what I did..ate the wrong thing..too much intercourse or what but it is so much better than before.
 
  Anyhow..I think it is so wonderful just short of a miracle how my lifestyle changes have helped.  My doctor doesn't think I am a true celiac but that i had toxins in my intestines that built up and then caused the inflammatory process.  the Rheumy from the university hospital now says he thinks I have degenerative/ mechanical and not spondyloarhropathy.  Since he said that I was more willing to get off celebrex.  Had a scare with heart palpitations..that helped too. 
 
 So wanted to post so that you all would have some hope.  It sucks to feel sick all the time and I am glad my persistence in research and finding right doc seems to be helping.  B12 shots hurt..but my doc thinks they are helping alot.  Has anyone researched yeast and how it can cause problems?  I am thinking the gluten free diet helped me get rid of yeast and that might have effected me systemically.
 
So here is the score
traditional medicine (take celebrex and antidepressants didnt help)  THE LOSER!!
holistic medicine listened and encouraged me (diet changes, vitamins, B12)  THE WINNER!!
 
Take care to all of you..i appreciate your support and input tremendously.
Sally
PS when my four year old gets up in the middle of the night..I can help him now..that is so awesome!!

kota
Regular Member


Date Joined Oct 2007
Total Posts : 121
   Posted 1/26/2008 9:45 PM (GMT -7)   
Glad to hear all has came back fine. I am currently at my cousin's and her lil guy has asthma. Some docs believe the red dye in foods can make it worse. I also have a friend who has a daughter and grandchild who are allergic to gluten. Nothing like a merry go round ride. I wish you luck. Hugs and nice to meet you. Kota

pjpreneur
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 4/1/2008 6:40 PM (GMT -7)   
I also have chronic low grade fevers, sore throats and swollen lymph nodes for several days on and off. Unfortunately, this has been a constant for nearly 2 decades. I have seen so many doctor's over the years who tell me there is no such thing as chronic EBV and they do that whole thing about how everyone has EBV titers-you know the story! It is so frustrating because it is like having the first stage of the flu all the time. My theory is that those of us who have this form of CSF have a totally different illness than those who get colds, etc. I know that I have an upregulated immune system which just works overtime to fight off everything. Thus, the immune response of sore tonsils, fever, and lymph node swelling. I would die if I had to go off to work everyday, no matter how I feel. I am so happy that I work at home so that I can work a lot on my good days and rest on my bad days. I actually spend most of the day lying on the couch on my computer.
I know this weird, but certain things seem to trigger the fever. Airplane flights-any crowded place where there are lots of germs and believe it or not, the telephone. When I hang up the phone, I am burning up.

kota
Regular Member


Date Joined Oct 2007
Total Posts : 121
   Posted 4/1/2008 8:21 PM (GMT -7)   
I was also diagnosed w/ EBV as well as Human Parvo-virus. I believe the two of them helped set off pre-menopause so I get Hot Flashes from time to time. Everyone says I am too young but have known ppl to be younger. Uff'da. Take care and be well. Kota scool

sheryl=jk
Veteran Member


Date Joined Oct 2004
Total Posts : 4083
   Posted 4/3/2008 6:30 AM (GMT -7)   
I have chronic low grade fevers, no infection, theyve chalked it up to a combo of pain, inflammation, and something autoimmune. redface
 
God Bless,and have a Great Day!!.......Love.....Sheryl
xcema,hypermobile,Chronic Bronchitus,Fatigue,Positive ANAFibro-05--Had surgery on left & right knees 06, Interstial Cystitis-06  implanted Interstim-06 hysterectomy & IBS-06 Arthiritus-04 Depression-04GERDS/ Hiatial hernia -07   Anxiety-07 Gastroparesis-08--Occasional Migraines Reglan,Protonix,Prozac,Effexsor,Erthomyicin,klonipin,occasional phernergan Im marrried 2 children, one with mild autism, Bipolar(8), she takes Abilify, Buspar, Celexa Son(13) is bipolarw/migraines, Topamax, ZantacGod plz grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference..."


Shelter
Regular Member


Date Joined Feb 2007
Total Posts : 155
   Posted 4/15/2008 3:51 AM (GMT -7)   
HI carrie
I get low grade fevers,, too
alot & oftn am just played out "Chronic fatiguque"// rather its
Fatigue casue by a auto immune syndrmoe...
called Sjorgrens
google it & read.... lots of info these days,,,

and my birth mom had LUPUS, both dieases have little constant fevers... aches.. problems... but our Blood work... is different

I say our Blood speaks...
:D
get your doctor to run some more blood work...
my ANA
and other test showed the Dr's what's going on
I now see a RHUEMETOLOGIST and... PAIN Dr. as I now also have Chorinc pain to deal with due to DDD, spine issues. and injury.

Let us all know how things work out for you
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31
 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal ProblesmFibro Myalgia ,Kidney Stones Esophegial Spasms,(  SI joint, low mechanical back pain.....
L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease , Bulging Disc, anterolisthesis L4 L5L4 -- S1 pain  caused by osteoarthristis ,   bone spurs, causing pinching or pressure  on spinal chord...), ~
 
 
Medications:    I am  TAKING   Lorazepam   1 mg  works well  when I am in   pain.... 1/2  tab at night  of  Endocet,(oxycodone HCL) .....and Robaxacet as needed Tylenol Arthritis,  Advil   as needed ,vitamins  B complex, Calcium & Magnisium,  extra  Vitamin D ,Garlic,Acidophilous, 
 
  I am NO Longer taking    Cyclobenziprine- gave me   BAD  night mares...   terrible awful   nightmares...   Amitripline, was used for rash, and  head aches... dr.  stopped   RX....   Celebrex 200 mg- gave me   excruiating MIGRAINS  daily...  was    not able to function.....  Dr. stopped RX    .... ,Rhodiola RX (GNC brand) tried for a short time.... might try again ,  

 


sheryl=jk
Veteran Member


Date Joined Oct 2004
Total Posts : 4083
   Posted 4/15/2008 5:40 AM (GMT -7)   
Shelter I got my daughter on the acidophilis, it helps ward of yeast infections and is actually keeping her regular since she wont eat fruits and veggies, I wish could eat them.
I had postive ana, still dx with fibro and still have low grrade fevers, especially when inflamed, the pain can make fever go up, inflamtion.
 
God Bless,and have a Great Day!!.......Love.....Sheryl
xcema,hypermobile,Chronic Bronchitus,Fatigue,Positive ANAFibro-05--Had surgery on left & right knees 06, Interstial Cystitis-06  implanted Interstim-06 hysterectomy & IBS-06 Arthiritus-04 Depression-04GERDS/ Hiatial hernia -07   Anxiety-07 Gastroparesis-08--Occasional Migraines Reglan,Protonix,Prozac,Effexsor,Erthomyicin,klonipin,occasional phernergan Im marrried 2 children, one with mild autism, Bipolar(8), she takes Abilify, Buspar, Celexa Son(13) is bipolarw/migraines, Topamax, ZantacGod plz grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference..." Plz help HW to help others by donating: http://www.healingwell.com/donate/


tickedoff
Regular Member


Date Joined Jun 2009
Total Posts : 56
   Posted 8/16/2009 1:55 PM (GMT -7)   
Have you ever been tested for lyme disease and co-infections by a LLMD lyme literate medical doctor?

spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 8/23/2009 4:55 PM (GMT -7)   
Hello Everybody,

I am Cara, previously known as Carrie J (nickname), whose screen name is now spaztick. I am the one who started this thread in 2007.

Wow, I don't visit this forum often, but I did today!

Update: The pieces of the puzzle finally came together ~ It's LYME disease!
I saw a Lyme Literate Medical Doctor (LLMD) several times starting September 2007.

I was diagnosed clinically (based on symptoms) with both Lyme disease and Babesiosis.
My Canadian blood work was negative. My Igenex (California) test for Babesiosis was positive, and my Western Blot results for Lyme disease were negative, but clinically significant (ie- positive bands).

I started treatment with oral antibiotic combination's in December 2007: Mepron + Zithromax; Biaxin + Metronidazole (Flagyl); Biaxin + Plaquenil, then Mepron + Zithromax again from Jan/09 to mid June/09 (had to treat babesiosis twice). I am currently off antibiotics and waiting for blood test results (checking out liver enzymes, etc.) but will be on Ketek 400 mg twice daily soon (along with Plaquenil 200 mg twice daily as a cyst-buster). Plaquenil has also greatly helped my osteoarthritis.

The fevers have been very stubborn to treat, but for quite a few months of 2009, my temperature readings have been NORMAL, or just below normal!! When I do get low-grade fevers occasionally now, the readings are far lower than they were (up to 100.9). They normally only go up to about 99.3. The main culprit has most likely been babesiosis, with Lyme disease contributing. I do not have an auto-immune disease.

It's hard to believe that I was undiagnosed for 7+ years, but unfortunately it's not uncommon. Lyme disease is included in the differential diagnosis for both FMS and CFS. In January 2009, my health improved enough for me to return to the gym after a five year absence! I have also been able to reduce my pain medication by one half! And no more chronic high-end low-grade fevers!

I have been off antibiotics for about two months now, and I am backsliding: headaches, visual disturbances like seeing zigzag flashing lights, hot flashes, anxiety pangs, cognitive/concentration/memory problems, low-grade fevers, nausea, pain, and disabling fatigue. I am patiently tolerating it, because I am hopeful that the ongoing antibiotic therapy will help. I went from being severely disabled and mostly housebound (more bad than good days) prior to treatment to being able to "get out and about" regularly (more good than bad days) with long-term antibiotic treatment.

One of the reasons why my late-stage Lyme disease has been hard to treat is because I remained undiagnosed for so many years. Other factors include strain of bacteria, its virulence, personal immunity, and the list goes on. Although it is a relief to finally know what has been ailing me for so many years, Lyme disease is no picnic ~ it is a highly politicized disease, with no clear consensus on both diagnosis and treatment.

There are NO Lyme Literate Medical Doctor's in Western Canada. The one who diagnosed me has retired, yet out of the kindness of his heart, and his dedication to the sufferers of Lyme disease, he still offers free advise to both patients and doctors:

http:/www.drerniemurakami.com -- web site address and forum

The Lyme disease forum on Healing Well has been a tremendous source of knowledge and strength for me. Along with my Mom's insistence, it was also the people on this forum who encouraged me to be evaluated for Lyme disease.

Feel free to ask any questions or post your opinions. I would be happy to help out in any way I can!

Cheers!

Cara (Carrie is my nickname, but my given name is CARA.)
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis

Post Edited (spaztick) : 8/23/2009 6:04:42 PM (GMT-6)


keigh
New Member


Date Joined Nov 2011
Total Posts : 1
   Posted 11/16/2011 12:35 PM (GMT -7)   
hi carrie,
i was diagnosed with cfs in 1990 at age 30. i had a low-grade fever, constantly, for nearly a year. i was so tired all the time, i could barely get out of bed (many days i didn't). nothing would make it go away, and the only relief i got was when i had a bath in lukewarm water. i hated the bath, teeth chattered, felt like i was freezing to death, and i fought it like a little child. but when it was over, my fever was down long enough for me to get back to bed and have a few hours of decent sleep.
now, 21 years later, i fear cfs is creeping up on me again. i'm panicking at the thought of it. i don't have insurance anymore so my 'regular' doctors aren't an option anymore. the 'charity' hospitals are slow and question everything in my medical history that came before them. i'm scared to death.
i see your post is old. i hope by now you've been properly diagnosed and have gotten better.

BoysMom
New Member


Date Joined Apr 2015
Total Posts : 1
   Posted 4/3/2015 12:18 AM (GMT -7)   
I have been going through 3 months of the chronic fever (always 100.9 or lower), extreme fatigue, body aches and multi joint aches. I feel so terrible most of the time. My fever seems to come in phases but never completely goes back to normal (2 weeks between 100-100.9) then 1 week a little better with a little energy (99 - 99.9). My PCP did blood tests and all were normal except ANA was positive. My joint pain is hands, elbows, knees, hips but no swelling or redness.

Have seen a rheumatologist and she said she isn't convinced that this is autoimmune related. My sister is diagnosed rheumatoid arthritis, CFS, and others. Next step is to see infectious disease doctor next week.

I am wondering if anyone has any recommendations on other tests I should ask for or specialists to see?
Thank you for any advice.

lovelylady3
New Member


Date Joined Jul 2015
Total Posts : 2
   Posted 7/14/2015 6:05 PM (GMT -7)   
Hi Carrie: I too have cfids/fm/ibs/migraines/ddd/spondyloesthesis/gerd, etc. I have been dx with cfids in 1997, fm after that. I too have chronic low grade fevers that do come on in the evening and post-exertion. I have also been having tummy troubles too, so may need to get that checked out also. May be an ulcer or I may have Pancreatitis again. Tylenol helps some. Had Ovarian CA 3 years ago, that is all good now. I know about Valley Fever, I live in Tucson, AZ. Will follow up if and when I go in. Have a good one....lovelylady3

Inspiredby3
Regular Member


Date Joined Jul 2013
Total Posts : 333
   Posted 8/16/2015 7:51 PM (GMT -7)   
I've read this whole post and my thoughts were right away that the poster has Lyme with coinfections. I have Lyme, Bartonella and Babesia and have low grade fevers. I test negative for Lyme, but do have bands that come up. After two years of being treated for Lyme, Bartonella finally came up on the test. I have drenching night sweats and air hunger that just won't subside, so was clinically diagnosed with Babesia as well.

There are so many Bacterial infections out there as well as Protozoan. Many you can't even test for and some still haven't been discovered. With CFS symptoms, Lyme is always a possibility of causing symptoms. The other tick born infections also have to be considered. Too often patients just get checked for Lyme and not the other infections.

I was tested for Lupus and had MRI to rule out MS and don't have any autoimmune markers come out. I did get bitten by a tick and had an oval red rash around the bite with purple center. I knew that I had Lyme by my symptoms and the timing of them coming on after the bite. With time and severity of my symptoms, I thought coinfections were involved but didn't test positive for any of them the 1st two years. Based on my symptoms, I thought I had Lyme with Bartonella and Babesia. That's what it turned out that I have. No one knows your symptoms better than you. Trust your instinct.
Found imbedded tick and oval rash March 2012
Symptoms appeared 2.5 months later.
Saw family Dr. Tested negative for Lyme and coinfections.
Took 300mg of Doxy for 2 months prescribed by husband. All symptoms returned within a few days of discontinuing. Treatment started Dec. 2012. On antibiotics since. Currently taking - Suprax, Azithromycin and Plaquenil. Japanese Knotweed, Samento, Banderol

Cbl
New Member


Date Joined Sep 2015
Total Posts : 3
   Posted 9/23/2015 9:46 AM (GMT -7)   
Yes, low grade fever, 99.1. Finally dx with ebv last year, but suffering from cfs for last 6 years. I often get hot/sweaty, weak fealty and light headed when I do too much.
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