Can you clarify the fever/lyme connection?

Discussion in 'Lyme Disease Archives' started by Junegal, May 29, 2008.

  1. Junegal

    Junegal New Member

    I saw a post on the CFS board about fevers in Lyme patients and am confused (what else is new?)

    I have been diagnosed with CFS but am now considering the fact that I may have Lyme disease. In March, I had the "flu" as diagnosed by my PCP. I could not move off of the couch, could not stand up. While I have CFS, I am not that bad everyday. This was like nothing I've ever had in my life. But...I did not have a fever. I *thought* with the flu you had to have a fever. But my body never got the whole fever thing, if it did, it was very very mild. I believe it was the flu because a few days into it my 8 year old was struck down with this sickness, but he had a fever for 5-6 days straight, and he never left the couch either. We were a freak show actually, he was on one couch, I was on the other -- and my four year old was trashing the house.

    Anyway...would this jive with Lyme, the fact that even with the flu for two weeks straight, I wouldn't get a fever? Is this another clue into the fact that I could have Lyme? I'm trying to piece it all together so I can get my life back over here.

    Thanks so much!
  2. victoria

    victoria New Member

    Many just have a flu reaction after being bit, without a fever or a rash... still others have no obvious signs til months or years later when seemingly unrelated symptoms occur. So it can definitely happen...

    Lyme and its 'buddies' (co-infections) like mycoplasma, bartonella, babesia, to name just a few things that can be transmitted by ticks, are devious and hide out immediately by going inside one's white and red blood cells, tissue cells etc., and can also form cysts to hide out from abx. (E coli also does this in bladder infections, which I know about all too well after having a 6 month bladder infection!)

    It is possible to have one or more of the bacteria that are transmitted by ticks and to not even have Lyme specifically; the testing for these others tho are way less reliable, less than 50%. Plus, for lyme and likely the others, the longer you've had it, the less likely you're going to show positive because it does hide.

    The good news is that most LLMDs will rotate abx to see how you respond, and there is a huge overlap in the abx and what they kill.

    Take a look at my post about lyme sites and protocols, there are lots of good links there to look at to further educate yourself. And, make sure you find yourself a good LLMD to get evaluated and tested - most doctors don't know anything/much about it, because there's a huge controversy going on right now about it-

    The IDSA (Inf. Disease Assoc) came out with guidelines that stated that there is no chronic lyme, that it's a mysterious 'post lyme autoimmune disorder' but no cure other than palliative... however, the Conn. Att. General filed an antitrust suit against them as there are huge conflicts of interest with insurance industry etc... they have come to an agreement before letting it go too far, and there are new guidelines to yet be set. It's sad because many of these docs in the IDSA have done a lot of good research, but 'cherry-picked' studies to back their original guidelines and ignored the vast majority of studies that say otherwise...

    Hope that helps a bit... good luck. lymenet has a place to go to ask for private IMs about good/bad LLMDs, which is how I found my son's - the best thing I ever did as it saved us money actually by not wasting time with doctors who didn't know anything.

    Good luck,

    [This Message was Edited on 05/30/2008]
  3. victoria

    victoria New Member

    same here.......... if I get a fever, it doesn't look like one or much of one on a thermometer, that's for sure. My 'normal' is about 97; my DH's is about 96, even tho he's on a fairly high dose of thyroid...

    I can see a doc not being impressed if he doesn't know that one's 'normal' temp runs lower than 98.6, and your temp is at that or even 99!

  4. bunnyfluff

    bunnyfluff Member

    Here is the take on that from my LLMD:

    My "normal" body temp is 96, somewhere in that range. The Lyme (and friends) disable the HPA axis so that you generally will not run high~ they do not survive well in temps over 102. They are exeptionally good at keeping themselves alive and well, to the point of being able to mutate within a minute of detecting changes in their "host".

    My LLMD will put his hands on my neck to "feel" for temp. He says I'm burning up, I can't tell. I was also advised to get one of the little thermometers that you press against the skin and it reads your temp, like for infants, and to put it on my neck or upper chest. I just stand and look in the mirror, and it gives a more accurate reading.

    I don't think I an recall when it started, it has been misdiagnosed for so long, but I generally do not get a cold, flu, etc. Just EBV.

    Not sure if this answers your questions, but I hope it helps.

  5. Pwr2Heal

    Pwr2Heal New Member

    I'm still trying to figure out if my symptoms fit Lyme or not. I've had a low body temp for decades and I would frequently run a low grade (99.0ish) temperature for weeks (usually 2-6 weeks straight). Is that consistent with Lyme? I'm now on compounded T3 and have a normal temp. Would T3 be able to do that if I had Lyme?

    Do you think anyone with a low body temp has Lyme, or are there other causes of a low body temp as well? Just trying to see if my symptoms are consistent with LD.

    Thanks for your help!
  6. Pwr2Heal

    Pwr2Heal New Member

    Hi, thanks for replying. That's interesting about your temp going up when you herx. I've only noticed my temp going low from die off. Does yours ever go lower as well? Makes me feel like ice when I get that when herxing. My doctor found some research that shows that endotoxins created from bacterial die off can cause the body temp to drop.

    I was on a combo of antibiotics (used for Cpn) for 3 months and had a LOT of herxing. All the herxing nearly wiped out my already fatigued adrenal glands. I had MUCH worse fatigue after the antibiotics, unfortunately.

    I haven't been tested for Lyme yet. It's been on my list for awhile now but I've had other priorities. I've been working through those priorities and am coming back around to thinking I need to get tested for LD. I was bitten by a tick about 35 years ago on a camping trip.

    Can you recommend a website with a good list of LD symptoms? And how do I go about finding a good LLMD?

    Thanks much!
  7. Pwr2Heal

    Pwr2Heal New Member

    Thanks for posting that. I'd forgotten about it. I went through it about 2.5 years ago and had something like 25 or 28. I have done a LOT of treatments since then and today I have 12. That would tend to make me think LD isn't my main issue (or all the things I've been doing have been affecting LD, too), but I still wonder...

    Thanks for your help!