Since I've started treatment in january, I've had 5-6 days each month with high fever (103-104), stomach-, neck- and headahce. Not on the exact same day each month, but within 6 weeks. I am far from symptom-free between these fevers and I'm generally worse than before treatment.
Anyone else experiencing treatment like me?
My stools are kinda dark when I'm having stomachpains and fever, which could indicate a bleeding. Never took a stooltest because it always passes.
Posts: 39 | From Denmark | Registered: Mar 2009
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
If your fever is over 100.5 then you need to get blood work STAT - ASAP !!
If your WBCs (white blood cells) have dropped down into the "critical range" (below normal), then you must STOP all antibiotics immediately -- until the WBCs come back up again into the normal range.
Otherwise, you are at risk for a secondary opportunistic super-infection which can quickly become life-threatening.
Remember, it's the immune system and the WBCs which are the Big Guns here, NOT the antibiotics. Without enough WBCs, your body is at risk for an overwhelming, life-threatening, opportunistic super-infection.
Fortunately, the WBCs usually come back up quickly - within just a matter of a few days (5-10 days), at which time you will be able to resume retreatment again with the same antibiotics. This is NOT an "allergic" reaction to the antibiotics. It's a Herxheimer reaction. That's why you will be able to resume the same antibiotic again just as soon as this temporary crisis has past.
This intense kind of Herxheimer reaction is very rare, even among very ill late-stage chronic Lyme patients. Thus, your LLMD might not know about it unless s/he has treated many, many Lyme patients in the past. (It happened to our daughter after she first started IV antibiotics, and that's how we learned about it - and I'll never forget it either because this kind of emergency is an experience that one never forgets.)
What you need to do is ask your doctor to sign a "standing lab order" for obtaining a CBC "on demand" so that all you have to do is simply show up at the lab to get blood work done ASAP.
Also, be sure to ask your doctor to sign an authorization for the lab to release the results directly to you so that you don't have to lose time waiting for his/her office to review your lab work and get back to you. You need this info promptly without any unnecessary delay.
The lab values and ranges for normal will be printed on the lab report, so you don't have to be a trained med tech to be able to interpret them. If the numbers are out of range, it will be plainly visible and marked in bold font so that you cannot miss seeing it.
Remember, Bb has a 4-week growth cycle, so that's why this is occuring on a monthly basis, during the time when the most bug-killing is going on.
Your body's immune system is having a very strong Herxheimer immune response to each monthly killing cycle because certain antibiotics (penicillins and cephalosporins) are effective only during certain cycles of bacterial growth - therefore, the monthly Herxheimer flare-ups for Bb.
Send me a PM if you don't understand this message so that I can explain it to you better by phone. Another experienced Lyme patient helped explain it to us. Otherwise, our daughter's LLMD was very new at the time and didn't know how to handle it until he had consulted with another more experienced LLMD, causing an extra delay at a very critical time.
We were very lucky to have had that other Lyme patient's help and guidance, and I'll be glad to do the same favor for you now because I know how extremely difficult it can be to comprehend complex ideas like this during the midst of a major crisis.
As for the dark stools and stomach pain, I would expect that Bb is inhabiting the intestinal mucosa, thus causing the GI pain and bleeding during each monthly "die-off" (bug-killing) cycle. (Spirochetes have been found in the intestinal mucosa by biopsy, but I don't have a medical citation for this statement - although I do recall reading it as a quote from an LLMD.)
That's why your monthly GI pain and dark stools don't surprise me. This symptom too is just one more crazy kind of Herxheimer reaction that one can experience with LD.
Posts: 4563 | From TX | Registered: Sep 2002
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Actually, I have stopped the antibiotics everytime this happens. A brake from abx and supplements for 3-4 days a month if I needed it was fine according to my LLMD.
Anyways, I will go and have my blood checked tomorrow.
I'm taking Ceftin. So what you saying is I should continue taking this when Im having the monthly pains and fever unless my WBC are too low? Because they are only effective then?
Thank you! Posts: 39 | From Denmark | Registered: Mar 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
TX that is a great idea. Quote "What you need to do is ask your doctor to sign a "standing lab
order" for obtaining a CBC "on demand" so that all you have to do is simply show up at the lab to get blood work done ASAP.
Also, be sure to ask your doctor to sign an authorization for the lab to release the results
directly to you so that you don't have to lose time waiting for his/her office to review your
lab work and get back to you. You need this info promptly without any unnecessary delay."
I recently stopped my tx for 5 days to clear 100
nite time temp etc. If it had been higher I would
have been alarmed and this would have given great peace of mind. Thanks.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by mupersan:
Anyways, I will go and have my blood checked tomorrow.
I'm taking Ceftin. So what you saying is I should continue taking this when Im having the monthly pains and fever unless my WBC are too low? Because they are only effective then?
Thank you!
Tomorrow will probably be too late for getting your CBC (complete blood count) lab work done. These WBC values change very quickly. The idea is to "catch it" while it's still going on.
So instead, wait until the next time that your fever spikes and then go to the lab "immediately-if-not-sooner" (tongue-in-cheek humor). You might have to ask someone to drive you to the lab if you are too ill to drive.
In the meantime, be prepared by asking your doctor to write the standing lab orders so that you have them on-hand to carry with you to the lab. Otherwise, by the time that you can contact the doctor's office to "ask permission" for the lab orders, this will create an unnecessary delay, perhaps causing the blood values to change before you can get the blood drawn.
Ceftin is a cephalosporin, which is a cell-wall-inhibiting (CWI) antibiotic. The CWI antibiotics work best when the bacterium is replicating. That's why ceftin is most effective during this particular time of the spirochete's monthly growth cycle.
Unfortunately for you, ceftin seems to be a little bit "too effective" at this critical time, causing you to have a potentially dangerous Herx reaction. Therefore, you need to slow down this level of Herxing by stopping the antibiotics for a few days -- until your CBCs are back up within a normal range again.
Eventually, your body will be able to tolerate the antibiotic continuously -- after you have been on it long enough to lower your total body load of "keets" ("keets" = short name for spirochetes). At that point, you won't need to stop the antibiotics during these severe Herx reactions.
It's entirely possible, of course, that your WBCs might be going sky-high, instead of dropping down into the critical zone below normal. If that's what's going on and causing the high fever in your case, then ask your LLMD for advice because I don't have a clue! (Our daughter's problems was the critically low WBCs, and that can become life-threatening, necessitating a break from antibiotics until the WBCs return back into the normal range again.)
If in doubt, though, if you are without the advantage of lab work to help you decide, then be on the safe side by taking an antibiotic break whenever your fever goes up over 100.5 -- and especially if it goes as high as 101.
Be sure to contact your LLMD. If your LLMD isn't very experienced, then s/he can consult with one of the more experienced LLMDs for guidance. (Dr. Burrascano would be the best one for your doctor to consult about this. I'm confident that he would agree to accept a call from another physician to offer advice for a critical problem like this - 'cause it was one of Dr. B's patients who taught us about it.)
PS - It's OK to post Dr. B's name openly in this manner because he is a recognized authority on LD and his treatment protocols are posted on the ILADS website. Besides, he's no longer in practice, so the Powers-That-Be can't touch him anymore. Otherwise, I'm am aware that we aren't supposed to post the names of LLMDs openly in any of the public Lyme forums.
Posts: 4563 | From TX | Registered: Sep 2002
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