posted
Hello! I have a question some of you Lymies might be able to help with. I'm on the waiting list to see a Lyme Disease Specialist. Meanwhile, my internist has consulted with him by phone. We think I have had Lyme's for 20 years. The specialist had recommended that I go on doxycycline for 6 weeks, then go off it for a few weeks, and have the IgG test repeated (IgeneX). My initial tests by IgeneX showed probable Lyme's. He said that often times the Lyme bacteria will hide in the white blood cells, and then really come out after being on antibiotics for awhile. I have been off the antibiotics for 3 weeks and am due to go in for my re-test. Meanwhile, after being off the antibiotic for 2 weeks, I began having a fever with no other symptoms than those I have been dealing with for 20 years. Is it possible that this is due to the Lyme bacteria coming out of the blood cells? My internist doesn't know, but meanwhile the Lyme specialist is off on vacation? Just wondering. Thanks for any help you can provide!
-------------------- THE PRESENT (author unknown): **Yesterday is history. Tomorrow is a mystery. Today is God's gift...that is why we call it the Present.** Posts: 13 | From Twin Cities | Registered: Jun 2009
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posted
I would say it is very possible that the fever is from Lyme. I used to run a low grade fever, which went away with Lyme treatment.
I hope you found an LLMD (lyme specialist) in another state, because MN has none.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Lymetoo,
So you think your fevers were caused by Lyme itself, as opposed to babesia? (since I know you had babs too)
That would be interesting to hear. I have these fevers that flare around 8 PM, and my body gets hot to the touch, and my temp will usually register 99.5.
I know 99.5 doesn't sound that high, but my skin (neck, face, sometimes chest, sometimes legs) start to feel very hot to the touch, and it's disturbing to me.
Also, I don't appear red or flushed, so it doesn't seem to be a dysautonomia situation.
Does that sound like what either of you have experienced?
My LLMD thinks Lyme is my worst infection, so it would make sense. Some might say that symptom is from babesia, but I was thinking it's from the Lyme.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
My sister tested positive in 2006. She has most-likely been infected for 12 years. She has not tested positive, even via IgeneX, since 2006.
HOWEVER, upon administration of IV antibiotics this year, she broke out in bull's eye rashes-- for the first time (noticeably, anyway).
She ran a high fever while on IV and is currently enduring lower-grade fevers (on orals). (note the risk of exposure and possible reinfection this year is virtually nil).
So, yes, it is possible to have a fever with chronic lyme.
However, I would not look to the testing to give you an indication of where you are in your infection.
As evidenced above with my sister, clinical symptoms are far more relevant to the status of the disease especially with disseminated, chronic cases.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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posted
Thanks to those of you who have responded so far. Yes, my fever is definitely lower in the morning, but I can feel it (hot all the time and perspiring). My eyes have that glassy look that you get with a fever, and when I am active or in the evening, it goes up higher. Could this be a herxing reaction? I didn't have a fever until this treatment started. My doctor is in consult with a physician here in the state of Minnesota who is on the list by the ILDA, so I'm curious why it was mentioned that there are no Lyme specialists in Minnesota. Thanks!
-------------------- THE PRESENT (author unknown): **Yesterday is history. Tomorrow is a mystery. Today is God's gift...that is why we call it the Present.** Posts: 13 | From Twin Cities | Registered: Jun 2009
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posted
If you look up bartonella and fever of unknown original you will find many sources linking these two, not saying they are the only cause but a possible ones.
I go through periods where I feel like I have a fever randomly and usually my temperature is normal. Last year I went through a period where I had it really bad for over a month. Eventually I ended up having a real fever. Had over 100 temperature for weeks. 5 days of zithromax knocked out the fever.
Now i'm back to the fake fevers again. Where it feels like I have them, but the temperature doesn't say I do. When I was on antibiotics after the real high temp incident the fake fevers went away and came back upon stopping.
Posts: 526 | From NJ | Registered: May 2007
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Kitte... What I mean is there aren't any there that I know of who are recommended by this site. Wait a minute... in Duluth??
What is ILDA?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Lymetoo,
But what do you think your fevers were from? Did you still get them after you were finished treating babs?
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I guess I got my referral from the Lyme Disease Association. They allow 3 searches for a physician every 30 days. There are physicians located in and around the Twin Cities who are listed. The other association I mentioned was the International Lyme and Associated Diseases Association. I guess it is ILADS rather than ILDA. ~~ Kitteagirl
-------------------- THE PRESENT (author unknown): **Yesterday is history. Tomorrow is a mystery. Today is God's gift...that is why we call it the Present.** Posts: 13 | From Twin Cities | Registered: Jun 2009
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