Hi everyone the reason I'm posting this in the Lyme section is, as some of you know, i'm investigating the possibility that my symptoms could be from Lyme and am getting tested Monday using an IGeneX kit.
But anyway when I go in to talk with my doctor I want to know wether I should pursue a particular symptom. Maybe you guys can help me out with that.
Since mid september i've been running what I think is a low grade fever of 99.6 to sometimes (right now in fact) up to 100.5! On top of it I feel really really tired and worn out. Like i'm fighting off something constantly. I've been going to the doctors on and off since September trying to figure out what is causing this and they're all telling me now that its normal variation? Since they can't find a cause.
My question is could it really be true that a chronic temperature of 99.6 to 100.5 is normal? Maybe I'm just taking my temperature cause I don't feel good and am now noticing a temp i've always had my entire life? Or maybe walking around or being a little anxious made it go up. At first I was absolutely sure it wasn't right since I remember my normal temperature used to be around 98 or so but its been so long and I've had so many doctors tell me I'm fine that I'm starting to doubt anything I feel is a real symptom.
I don't know what do you think? Is this temperature normal? Could it go up that high just from walking around or being a little anxious? Does anyone experience chronic fever with Lyme?
Thank you :D. I just want to know if I should give up on this symptom and chalk it off as normal or not before I go talk with my doctor again as everyone seems to be against me when I tell them I don't feel its right.
Sorry to hear you're struggling. It is very frustrating when doctors are dismissive, or tell you that whatever you're struggling with is within the range of "normal." I think that's what some doctors do when they don't have an answer for you.
A chronic low grade temp is not normal. You probably feel crummy and have a low grade temperature because your body is trying to fight something off. Lyme Disease is a possibility if you've been anywhere a tick could be. So is Babesia. Lyme can cause a low grade fever for a while. In chronic Lyme, you're more likely to have a slightly below normal temp.
Since your doctors are doubtful, I recommend you keep a symptom log each day. It is amazing how much more seriously they'll take it than if you just verbally described your symptoms. Write down your temp and rate your fatigue level. Write down anything else you feel that doesn't feel right, such as brain fog, loss of appetite, difficulty concentrating, muscle or joint pain, headache, etc.
It is good that you're getting tested at IGeneX. Make sure you get the Western Blot done. If cost isn't prohibitive, you might consider Babesia testing, too. Babesia can cause a chronic low grade temp, too.
Keep being your own best advocate. Find a different doctor if you need to. You will most likely find that you need to see an LLMD to get properly treated if you do indeed have Lyme. Most docs will only give a 2-3 or maybe 4 week course of antibiotics, which isn't enough if you've had it for several months.
Doubting oneself is, sadly, also a symptom of Lyme ....
-- partly because of the reaction the MDs give, looking at each symptom separately rather than as a constellation that should be viewed as potentially interconnected, and
-- partly also because one of the symptoms of Lyme is anxiety -- sometimes mild, sometimes fairly intense -- all caused by the biochemical mess the Lyme etc. (babesia and so on) can make of the whole endocrine system.
It's simply part of the illness.
Yes, one can be anxious for other reasons, but do not discount any of your symptoms and try to rationalize them away. I remember being that way too, and it took a long time to realize that of the half dozen or so main symptoms I had, all of them had to be considered and not just the one or two that were the most bothersome.
Because my memory was a hash, I started keeping a daily log with quick notes of how I felt each day: how I slept, how my appetite was, what hurt, how clear or foggy my mind was, what my temp was. Some docs will tell you to stop obsessing, but a Lyme doc likely will not. It was helpful to me to look back and see what shifts there were over time, and my memory was a mess any way, so the notes were important to be able to fill in my doc. Before each LLMD appointment, I would do a review of my daily notes and summarize the trends, and take that summary with me to the doc.
And DO be sure to get hard copy of ALL your test results. Doc's office staff hate making copies and spending the money on paper and toner, but hey, I paid for the tests and paid the doc for the appointment, so I deserved a copy of the test results!! I kept them all in a big binder and have it still, along with my daily symptom logs. I think by law the doc's office HAS to give you copies of your tests, but if they don't offer, just ask at the front desk and wait there until they hand them over. And politely specify that you would like copies of ALL test results, even the normal ones. The best doc's offices don't need prompting that way, but ... well, you know.
You may find going forward that you will see more than one doc for Lyme etc., and those medical tests are valuable data to docs who know how to read it.
End of lecture! You are on the right path, wanting to be accurate and useful with your data points when seeing the doc. Rest assured that ALL your symptoms are important, because Lyme is often subtle and confusing, esp. when there are other infections (co-infections) present. A good doc knows that a patient history and symptom list is the most important thing they can have to start with, because it will guide their further inquiries and tests and treatments.
Way before I knew I had Lyme, I had a chronic low grade fever. My Doctor did a million tests and misdiagnosed me many times. I had it for so long that doctors knew it wasn't normal. They even did a spinal tap, after 10 years of a low grade fever.
It is not normal at all. I didn't even know the word Lyme since I was bit way over 20 years ago.
Ironically, now that my Lyme has become chronic, I actually have below normal temp, it runs about 96.5. So I agree with everyone above, just wanted you to know my experience.
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