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» LymeNet Flash » Questions and Discussion » Medical Questions » continued fever

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Author Topic: continued fever
SuZ-Q
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I'm trying to figure out exactly what is going on with my daugther's fever. She has run a continuous fever for about 2 years now;she has been on abx treatment for about 10 months (lower levels off and on for over a year prior to her Lyme/Bart diagnosis.

Her fever seems to rise with stress, during the summer months it goes down to around 100 or less, but during school it stays in the 101-102 range with one episode which lasted several weeks of 103-104.4 temps. Can there be a psychological component to fever? She is taking a heavy load in middle school.

Her fever does not follow the typical pattern of daily ups and downs, there is very little variation during any one day and any rise usually takes place over several days. Can anyone think of an explanation for this?

Also, her temps never register as high on the digital thermometers in the doc's offices. We use glass (we have both mercury and environmentally friendly) and they give results that are consistent with each other and the rest of the family shows normal. I'm afraid the doc's are going to think we are making it up. Any thoughts on this would be most appreciated!!!!!
Suzy


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lookin4answers
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Bumping this to the top for others to see.

I am not sure about that, but it sounds frightening! Just wondering, how old is your daughter? What type of dr. is treating her?

Hope you are able to get answers soon. Take care, Amanda


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SuZ-Q
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It is frightening. I wonder if there is another underlying cause besides the TBD's that are creating this fever. She also has gotten to where her body doesn't have the same reaction to fever that it used to. She definitely feels bad, but is not always chilled and shaking like most people would with a temp around 102.

She is seeing a LLMD and so far they seem to believe us, but on their digital thermometer, she usually registers a couple of degrees lower than our mercury. They say the mercury should be the most accurate.
I am always present for her temp taking at home, so I know she is not cheating. She is 13, could hormones have an impact do you think? I would be most grateful to anyone who has any thoughts on this !

Suzy


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Barngirl
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What was her Ehrlichia titers? Babesia?

How old is she? You need to get her to Dr. C or Dr. J

they are the only LLMDs that treat children.

My daughter ran a fever with babesia. She was 3 years old when this started. She was treated with mepron for over 6 months. Is still on zithromax and cedax for 10 months now. She has improved. The fevers have stopped thank goodness.

I ran a fever with ehrlichiosis. I had both
types. One can be treated for it for 4 months and still not completely rid of it.

I can't beleive she feels well enough to go to school with a fever over 100, never the less 102.

don't let this drag. She needs help immidately. Has she had a complete metobolic panel done?

My liver values went thru the roof. I had mono, positive EBV, lyme, HME, HGE, babesia, bartonella.

Good luck.


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SuZ-Q
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She's been on Mepron twice, just came off of it a week ago. The only thing she tests positive for are Lyme and Bartonella. She is very fatigued, but still manages to function most of the time, although she's been out some this week. Last year she spent most of the school year on home bound status, but returned full-time in late spring. She seemed to feel pretty good over the summer, but once school started, the fevers started inching back up.

I keep wondering if there is something about the stress of school that exacerbates her symptoms or if there could be some underlying thing that has her whole thermoregulatory system out of whack. The hypothalmamus plays a large role in temp regulation and I wonder if neurological involvement could cause this to happen.

Barn girl asked about our LLMD. We are seeing someone on the ILADs board, but he usually does not see children. She's 13, do you think that makes a big difference in childen?

I have searched everything I can think of about fever on the Internet, but haven't come up with any good answers or ideas. All ideas are welcome and appreciated!!!!

Suzy


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SuZ-Q
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Still looking for ideas from anyone who has an opinion. Is the fever all coming from the Lyme/Bartonella or are there other possible causes we're missing? Can your body adapt to having a fever if it has been going on so long(she can function better than would be expected for the level of temp)? Am feeling totally clueless and desperate for answers.
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RECIPEGIRL
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Suz-Q,

Wow, you need answers now.

Keep this at the top all weekend & see if you get more hits.

To the top.
Jan


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SuZ-Q
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This has been a rough week, the fever has inched back up to close to 102. She is very tired and sleeping a lot. She has constant throat and ear pain(she's had this every time the temp goes up close to 101-tonsilectomy last year)and severe back and neck pain. She is currently taking Minocylene, Plaquenil and Zith. Still searching for ideas.
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SuZ-Q
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Went to pediatrician today for flu shot. First the nurse did a tympanic(ear) temp. - 98.1 then tried oral digital - 98.5. So I brought out the mercury glass thermometer, had the nurse shake it down and lo and behold she was 100.6(yesterday she had been feeling really bad and it was 100.7.

They could give me no explanation. I have had digitals give me readings that are several degrees different taken within minutes. At least now they know I am not crazy and making it up. They recommended we go ahead withthe shot. LLMD's office had said not to, but since this was probably our only chance and she always runs some fever anyway, we did it. Hope it was the right decision.

Can anyone think of something that might upset the body's thermostat and ability to regulate itself? Tylenol and Ibuprofen don't phase it, it doesn't follow the usual diurnal patterns and although she feels bad, it seems like she should be shivering and barely able to function when it gets over 101. Help!! I am desperate for answers.

Thanks from Suzy!!


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SuZ-Q
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OOPS- that should have said she was 101.7 yesterday. That is why I called the LLMD before her flu shot.
Could anyone tell me how to edit a post once it is already up?
Thanks!!

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Barngirl
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Hi SuZ-Q,

(my mom's name!! )

Has her fever improved when she is on mepron?
How long has she been on mepron?
Each time?

My Daughter's llmd says to stay on mepron for a minimum of 6 months straight. Some people are on it longer. Her llmd says she sees replapse with anything shorter than 6 months. Could it still be babesia?

flucuations in temps-yes I have had this in a mater of minutes of feeling hot then cold.
Personally i think this is babesia. I could be wrong though.

Your daughter's temps are right in there with what my daughter's use to be. If she is feeling tire all the time and not in lyme cycle, I would vote on babesia.

Ssometimes there is a difference in therometers but the main thing is to use the same one all the time. It will register any differences.

You may want to consider a peds LLMD. They know how kids react verses adults, and their emerging hormone thing. I learn so much each time I go. They are different.

I wish I had answers for you.
Maybe she should just go back on mepron and see if you notice a difference.

this did happen to me and my babesia titer showed nothing. I also know bartonella can be nasty-I;d call llmd that treats children.

Sorry to go around in circles. Each disease is different but then over lap. It's hard to tell when you have more than one or two.

Good luck and keep us posted.


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BamBam
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The same thing happens to me. I have had a fever continiously for 3 years now. It ranges usually from 100.8-103. My doctor says it it b/c of the multiple tick-borne diseases I have. I have Lyme, Bartonella, and Babesosis. The only time it got better was when I was on IV rocephin for two months. The doctor is now putting anothe rIV in for a few months to see if it goes away. He told me that this happens with a small percentage of cases and lucky us...we are that small percentage.
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SuZ-Q
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Thanks for your responses!! She was on Mepron for a month each time. We didn't see any significant changes while she was on it.

I'm starting to feel like I'm not being taken seriously at appointments and it is a real concern to me. I've had so many medical people tell me the digital thermometers are supposed to be accurate, but anectodally, they constantly hear they are low. Why do doctors continue to use something diagnositcally that does't work?!
There is a glass thermometer available(Geratherm) filled with an environmentally friendly substance. I have 2 of them and they always give me the exact same results as the mercury, but my digital one can give me very different readings within 5 minutes. I am getting very frustrated that my daughter is keeping temps of 101-102 that don't register at the doctors. Last time we went to the LLMD she registered no fever, but that night at home she was over 101. Could this effect our treatment from an insurance standpoint if there is never a recorded fever in her records? I am getting so frustrated!!

I sent her to school today with a temp of 101.5 and a very guilty conscience, but we are trying so hard to avoid homebound again. Do any of you also have fevers that don't respond to Tylenol and Ibuprofen?
Thanks for all responses.

Suzy


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SuZ-Q
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I wanted to add to Bam Bam, good luck on the upcoming IV. I hope it helps with your fever and other symptoms. We haven't tried that route yet, but I am keeping my fingers crossed for you.

Barn Girl, I think I know who Dr. J. is, but not Dr. C. Do you know if either is taking new patients? Thanks!!


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liz28
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Though I can't give you answers to this serious situation, I just wanted to let you know I've had two experiences you describe here. I've had the continuous fever, which comes back if I go off my current abx regimen. Also, I get very, very sick if I take minocycline at high doses. It's a herx reaction, which is good, but it can be worse than the Lyme. At its worst, it can physically paralyze me for over an hour at a stretch. It's hard to imagine a child being on mino at the kinds of doses adults take.

What's helped so far is to open up the 100mg mino capsules and pour little bits of the powder into empty gel caps. As long as I don't go above 50mg per day, I get an obvious benefit from the drug without herxing much.

The abx that work best for me are ketek, mino and omnicef. All of these are extremely strong, though, so as others here suggested, please ask a reputable doctor about them.


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liz28
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I just reread your post and noticed one more thing. Personally, I think there is no psychological component whatsoever to Lyme fever. Six weeks ago, I started on ketek, an abx for people who have developed resistance to other drugs, in addition to my regular regimen. It worked immediately and consistently over time, and I was in a great mood.

A week ago, I tried to go off omnicef, and had a neuro relapse, but the ketek was still working on the Lyme in my chest. I went back on omnicef, and it started working again right away. My psychology didn't have a thing to do with it, and consistently improves when my fever goes down. So the reverse to your question seems to be true: health influences psychology, not the other way around.

But it's a lot easier for doctors to blame Lyme victims than it is to admit we just don't really understand the disease yet, or have appropriate abx.


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SuZ-Q
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Thanks Liz. She's on 50 mg of minocyclene 2x a day, maybe that's too much, but her fever had started inching back up while still on the mepron so I don't know if that's what is making a difference.

This is our 3rd year of seeing fevers during the school year that get a lot better(but don't totally disapear)during the summer. I guess it is just the extra demands on her body of getting up early and going all day, probably not psychological.

I'm not familiar with ketek or omnicef. Are they newer drugs? We've done, in addition to constant Zith and Plaquenil, Biaxin, Doxy,Mepron, Flagyl, Augmentin and Septra. Maybe I should ask about these other drugs at our next appt. Do you know if kids can use them? Every time I think we are making progress we end up going right back to where we were. I know we are not the only ones to experience this, but it is so frustrating I have to vent. She came home from school early again today and I know we are just a few missed days away from having to go back on homebound. That was a nightmare last year. Some of her teachers were very uncooperative and seemed to not believe she was sick and her social life took a complete nosedive(very difficult for a middle schooler). Hopefully, we'll hit on something soon that will make the difference in her treatment.

Thanks again!!! Suzy


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Barngirl
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Hi Suz-Q,

My fever did not respond to tylenol and or ibuprophen. Be careful. They can make her liver values go up if taking too many.

My liver values were in the 500's. All this stuff gave me hepatis. I originally took tylenol around the clock and could not get my fever below 102.5. I know that tylenol can be hard on the liver and ibuprophen on kidneys. I was on doxy first for both ehrlichias, very high counts. I ran a fever for 2 months but it was starting to come down. The doxy really helped me there. Then small fevers were my babesia. Those fevers were random. Not constant.

I think you should recheck her co-infections at Igenex or Bowen. And go to Pediatric llmd.
The one we go to is great and she listens.
It is a team effort. She asks so many questions and does the best thorough exam
my little girl has ever had.
She understands children and knows what they can be treated with. That is her specialty.
I love her.

(Your llmd takes insurance????)
I don't know of any llmds that take insurance.


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Barngirl
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Dr. C is taking new patients. She was closed for a while but has now opened up.
Email me if you would like to have her name & number.

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SuZ-Q
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Hey Barn Girl, I hate to admit to being so computer illiterate, but how do I access your e-mail address? I would like to get that info.

Most LLMD's don't take insurance? That's scary. Our insurance has been covering pretty well so far. I actually read another post from someone who sees our llmd and they said they could no longer be seen there because they lost their insurance. I guess if they don't take it, you can just file it yourself and be reimbursed later, but that's probably a pretty big chunk of change that would have to be shelled out, especially for the initial visit. Oh well, nothing is easy about this illness.

Thanks a bunch! Suzy


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SuZ-Q
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UP for anyone else who would like to weigh in on this. Still no changes in fever.

Also, how do you tell the difference between neuoro symptoms (Lyme rage, etc.) and being a typical teen going through hormonal changes, etc? I felt like I was living with the Bride of Chuckie last weekend. With 2 teenagers that both have medical problems that can affect their personalities and demeanor, I sometimes think I am losing what is left of my mind!

Thoughts are as always most appreciated!!
Suzy


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lymeinhell
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IMHO - Flu shot was a big ole bad idea. Your LLMD was right. Tons of mercury in the shot.. and to top it off now you've given her immune system yet something else to fight off. My LLMD tells us all to never get one.

See related post: http://flash.lymenet.org/ubb/Forum1/HTML/028512.html
I can't understand the fevers, but hope you'll be able to get some help soon.

------------------
Julie G.
___________
lymeinhell


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2roads
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Suz-Q


Wow, I can relate to your temperature taking frustration.


From my experience, digital thermometers in the ear are as fluctuating as the depth you stick them into. The deeper, the hotter. They can't even produce repeatable results if you administer at the same depth. I use the thermometers you use. I have 4. They all check out the same. Their env'y safe...and accurate with the Mercury. Keep using them as a reference. Others are wrong.


I read your e-mail and, for some reason, bacterial meningitis came to mind....neck and back pain. I don't know why, but I'm throwing it out your way.


Doc J in New Haven, Conn is your man. Dr. C just came back from a one week crash course with him. Doc J turns no one away.


I wish you well. You're on the right track-


2Roads


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SuZ-Q
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Thanks for your input, 2roads! I'm glad to know that someone else has had similar experiences with the thermometers. At least that is one point where maybe I can say I'm not crazy.

I spent 20 minutes on hold (long distance) trying to talk to someone at Dr. Jones' office this morning. Does anyone know if it is always that difficult to get through? I never got further than, "Please hold." I can't afford long distance bills like that everytime I want to schedule an appointment or have a question. Maybe they were just having a rough day, short-staffed or something. I will give it a try again tomorrow.

Thanks again, 2roads.
Suzy


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2roads
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Suzy,


Keep trying. Because they turn no one away, their practice is volumous. Sometimes it's busy for hours, or the answering service is on. They keep it on, occasionally, during business hours, just to catch up. Stay on the line and speak to the answering service when it's an emergency. They will fax your info over to the office and have someone call you. Otherwise, call them before the end of that day, they will be picking up again. You can get through, you just have to understand the dynamics. I remember my first plight. I thought, "how can they be reputable when it's clearly office hours, but service is picking up"? They are just really busy, and open to all. It's all they can do to get by. They are people too. Hang in there.


Hugs, 2Roads


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SuZ-Q
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Well lymeinhell, you were right about the flu shot. I read on another post that it takes about two weeks to have a reaction. It has now been two weeks and last week she was doing better, fever back down to around 100, but today it 102 and she is miserable.
Will I ever get any of this right and does this nightmare ever go away? Feeling very discouraged and guilty.

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SuZ-Q
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FURIOUS, FURIOUS, FURIOUS!!! Just came back from pediatrician. Intense stomach pain and nausea for 1 and 1/2 weeks. Temp on digital thermometer was 99.5. Got out our mercury thermometer and she registered 101.2. He tried to imply that we weren't taking her temp right or something was wrong with our thermometer. Tried to explain that we have 2 different types of glass thermometers that always give same results and both always show the rest of the family normal(we even have some duplicate thermometers still in the package we can get out to use, but no one is interested). NO ONE is taking her fever seriously!!! Not even LLMD. Showed temp log to pediatrician and because there were no normal temps, he really questioned the validity. How can I get someone to take this seriousl??? This child keeps a fever of 101-102 a good bit of the time and it rarely dips below 100. This has been going on for TWO YEARS. I am so upset and frustrated and tired of being treated like a nutcase with Munchausen's that I am on the verge of tears. Does anybody have any suggestions on how I can get the doc's to pay attention to this?? Please help!!
Thanks, Suzy

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pattiecake
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Dr. J is definately the best for kids. (too bad he doesnt see adults LOL!) It can be tough to get them on the phone but if you hang in there you will. He saved my daughter from lyme. She was really sick. My son got lyme while we were on vacation in N.C. and he even helped us by phone. I never had a dr. examine my kids as thoroughly as he did. If anyone can get to the bottom of this it is him. I am sorry I have to agree about the flu shot tho. They are nasty and I am shocked the dr. wanted to give it to a child so obviously ill not to mention the mercury in it.
Good luck and keep us posted.
Pattie

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SuZ-Q
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Thanks, Pattie. I think I will try Dr. J again tomorrow. Do you know anything about Dr. C in PA? I like what I have heard about her, but have only heard from one or two people. I looked up a presentation on-line she did on pediatric lyme which was pretty impressive. She has worked with Dr. J and she is also said to be thorough. She would be much easier to reach geographically. I am at the end of my rope with this fever thing and doctors insisting that our mercury and galistan thermometers must not be as accurate as their digitals.

My husband actually was the one with my daughter today ( I was taking other child to diabetic dr.)and he said the nurse even did experiments with our mercury and their digitals in water. He's furious, too.
The digitals were not consistent, but she said, "Well, because they are different does not mean they are wrong." If they are different from each other, at least one of them must be wrong. I give up. I wish hubby had taken galistan and mercury thermometer still in pkg. with him also and let them experiment with them also, especially since we see such consistence.

Oh well, enough whining, hopefully I can eventually find someone who can help me get to the bottom of this.

Thanks again! If it weren't for a friendly word from you guys now and then, I think I'd go nuts.
Suzy


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