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Can you have herxheimer like reactions with other infections? Besides lyme/ syphilis? thanks
Posts: 66 | From Memphis | Registered: Feb 2013
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The reason i ask is that i have a situation that seems to be perplexing even my llmd dr. C.
If i miss ONE day of bactrim....my symptoms become severe. Especially spine stiffening and rounding of back...can hardly hold my neck and back up.
Also enourmous head pain. Takes me from baseline to packing my head in ice packs and avoiding any noise and in bed. Wouldnt feel safe to drive.
Only reason i have tried is he thinks and so does oral surgeon that i need a bone biopsy...BUT this is what happens after one day.
Oral surgeon spoke with llmd today and said there is still no explanation for the symptoms of one day off of bactrim, but he does recommend the biopsy.
I need to be off for seven. How? And if they cant explain it anyway..do we need to be looking somewhere else besides my jaw? I do have a neuro appnt next week.
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However, i DID have big herxes on zithromax and he had me come off of it. It took ten days to get back to baseline.
Posts: 66 | From Memphis | Registered: Feb 2013
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From your posts I am thinking that your using bactrim to treat lyme?
It sounds to me like the Bactrim you are taking is holding back (barely) another infection like babesia and/or a bartonella infection.
Bactrim is sometimes used for babesia. The symptoms that come back for you after one day off bactrim sound like some of my babesia symptoms(severe neck, spin, jaw headaches etc). I even got neck spinal surgery for my neck pain.
If I were you I would ask Dr. C about babesia treatment like mepron or malarone, art. etc . Once I started babs treatment my horrible symptoms got more under control.
I would not get a bone biopsy because I think it is too invasive. I think your body is telling you that the med(bactrim) you are taking is working hard to hold back an infection
but that it does not have the power it needs, probably because it is not the best med for your infection (babesia, bart).
The pain you are feeling is probably not a herx reaction but the angry (babs or bart) infection symptoms coming back in full force.
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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I would agree that it sounds like you have a very severe babs infection. Both zith and Bactrim are very mild babs drugs. Neither does much for lyme or bart.
And babs can come back witnin a day or two. Once we finally figured out what his babs symptoms were and he got the load down some hubby tried pulsing babs meds 3 times. Each time his dry heaves, tremors, dizziness, mild sweats and mild headaches came back within 3 days. Seizure like spells took a few weeks to come back.
Aggressive babs treatment can improve symptoms very quickly. But with such severe symptoms I would start slow but ramp up as quickly as possible. Back down on doses for herxes but do not stop treatment if at all possible.
I would try babs treatment first before doing a bone biopsy.
Suggest doing some additional babs tests rather than the biopsy if you feel you need confirmation of that infection.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Well initially the bactrim was for a jaw / cheek infection that persisted. Before i had a pos lyme test. But the third day i took it i had extraordinary headache, fifth shortmess of breath...so i would take it a few days and it would help my dental pain, but then i would stop it when the herx reactions starrted....so i would start and stop...and leveled out at about a month to daily. I worry that me taking it like that made it a worse infection.
Anyway...because i have a history of oral infection...dr. C had already said he thought the infection there was likely something different. I had the swelling, redness, discharge, bad taste...all the stuff that goes with that sort of infection. He was worried about strep and wanted to test for it...but i was on abx....and i CAN NOT stop. It is that bad.
He had told me the reality is the biopsy may have to wait so when he talked to oral surgeon maybe ne changed his mind.
Posts: 66 | From Memphis | Registered: Feb 2013
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When those things were happening i had no idea they were likely herxes...i thought it was yeast flare ups or allergic reactions. I had never heard of herxes.
Posts: 66 | From Memphis | Registered: Feb 2013
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Yes, the idea was to do biopsy and cultures for the jawbone in order to get a specific iv drug to knock it out. Ive been dealing with it for over a year. We dont know if it is fungal, bacterial, what?
So ID is standing ready and armed but needs a biopsy. Dr crist thought it would have to wait due to my symptoms i described but looks like when they talked he agreed necessary. Go figure. A bone scan was negative. However there is a suspicious area that surgeon is picking up on ct scan.
My biggest concern is why do it any of that, if noone understands WHY my spine is tightening down severely....cant hold up my back...enurmous head pain...with one missed day. It takes me from functional to totally in bed surrounding my head in ice packs and feeling very meningitisy...but no fever.
Making an appnt with neuro next week and may need to make an appnt with dr c again sooner. But maybe i trust his judgement. I have NO idea how to get off of abx for a week with those symptoms..it feels dangerous.
Posts: 66 | From Memphis | Registered: Feb 2013
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The oral surgeons email read had a nice converasation....but there is still no explanation of your rapid decline with one missed dose.
Posts: 66 | From Memphis | Registered: Feb 2013
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I also believe lyme and babesia can cause jaw symptoms too. The shortness of breath you experienced sounds like babesia.
One thought is that your immune system was lowered by lyme and co-infections which could have helped to cause your jaw/cheek infection.
This infection may have also found a prime place to occur in your jaw which may have been weakened by a bartonella infection. Then when you were placed on Bactrim you may have experienced both a herx from lyme/bart/babs die-off and pain improvement from the tooth infection improving.
Are you trying to get off Bactrim to have the jaw biopsy? If so, your severe relapse of symptoms may not make that the best choice at this time but that would be for you and your dr. to decide.
One idea is to stay on Bactrim and add other Babs/Bart meds to get your load down.
Instead of going off and on when you experience a herx it would be better if you learned all you can about managing a herx through detox detox detox.
Believe me I have one of the bad HLA-DR detox genes and I have had to learn how to detox in order to be able to keep treating.
Modified Citrus Pectin, Charcol Caps, Epsom Salt Baths, Infra-red sauna's anything you can to mop up the die-off and keep you well enough to treat and get your infection load down.
Then if you can lower your load of infection you may be able to get off the antibiotics long enough to get a biopsy if you still need one.
It sounds like your body is telling you that going off may be too traumatic for you right now? Instead if your dr. thinks staph he may have to choose an antibiotic that would cover what he is most concerned may be occurring.
In order to make any of the infections less likely to develop resistance it would be important to always be on a combination of at least two.
Not sure if that helps at all. Wish I could help you more. Others may be along to comment and have some better ideas.
All the best-S
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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iluvrain and lymetoo I was typing my post above while your posts went through and I didn't yet read your additional info.
iluvrain, your symptoms when you come off Bactrim, " spine is tightening down severely....cant hold up my back...enurmous head pain...with one missed day" still sound like they Babs to me.
Just an idea that you could think about talking to your doctor about would be to try and switch to Mepron or Malarone and Art (which are not antibiotics but instead antimalarials) while you try to wean off Bactrim and see if they can help keep your symptom flare down long enough until you can get a biopsy.
Just go slow with Babesia meds in case your severe returning symptoms indicate a high load.
Very complex situation. However, you have a LLMD who had been around a while and has a lot of experience so that is good.
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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Thank you! That is a great idea! We are sort of suspecting bart bc i do have pain in all teeth, loss of bone. But yes def have the shortness of breath. Been on bactrim for four months...pulled me from the near dead i tell you. Now it just keeps me treading water.
I wonder if i should make trip to see llmd again before decision made. Other thing is my shoulder/ chest is always red since the worst of dental infection...and ive wondered if infection moved there...which pulls forward and could make spine stiffen. Shoulder is just shot..helld together with tape.
Posts: 66 | From Memphis | Registered: Feb 2013
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The redness in your shoulder does not sound good at all and lyme and co's lower your immune system so the bactrim could really be helping keep an infection under control.
Please know that any of the info I shared is just from personal experience. I am definitely not a dr. ! Ha -not even close : )
So keep reading, keep asking ?'s, keep researching and gather what information you can to discuss with your doctor.
I'll keep you in my prayers. : ) Keep us posted - S
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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