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Update - Dr. J Protocol - Bartonella

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Posted 4/7/2020 8:03 PM (GMT 0)
Have had a hard time on Lyme Babesia part A which my LLPA says is unusual. Haven't been able to pull out of it, and it was getting harder and harder to tolerate the doses. LLPA says she hasn't heard Dr. J mention anything about this Part A flaring anything. I've also been the same or worse on weeks off which LLPA thought was different as well.

Thinking perhaps a co-infection is coming out that what I'm taking is not hitting (symptoms make me think Bartonella). Planning to start a trial of Lyme/Bart protocol with Omnicef, Septra DS, Rifabutin, Cipro, and Flagyl after taking an extra week (two weeks total) off. Watching this extra week off to see if things start improving or stay bad, to see if things will "wash out" or perhaps something is there that needs to be killed.

I've heard here on the forum that Mepron could flare Bart?

Will plan to update.
Posted 4/7/2020 8:38 PM (GMT 0)
I don't recall the Mepron flaring Bart....but my symptoms have always been all over the map. (with a few exceptions here and there)

Daily flares, and random better days regardless of where I'm at in the treatment.

However I definitely felt worse on the Bart/Persister's protocols....particularly when I was taking the Rifabutin, Minocycline, Ceftin, Dapsone, Daraprim together for one week.
Posted 4/7/2020 8:53 PM (GMT 0)
LLPA says you can herx bad with the Lyme Bart protocol. She wants me to "tiptoe" into it.
Posted 4/7/2020 10:44 PM (GMT 0)
Mepron flared my bart. You're not taking anything for bart currently?
Posted 4/7/2020 11:02 PM (GMT 0)
I was on Omnicef, Septra DS, Mepron, Flagyl, Artemisinin, Cryptolepis, and Enula.

I don't know if any of that was killing bart or not, but if so, it seemed like something was flaring it more than killing it...if Bart is the culprit.
Posted 4/7/2020 11:17 PM (GMT 0)
Septra and flagyl should kill bart. I suppose you could try minocycline if you need something else for bart.
Posted 4/8/2020 1:00 AM (GMT 0)

ChristianWithLyme said...
I was on Omnicef, Septra DS, Mepron, Flagyl, Artemisinin, Cryptolepis, and Enula.

I don't know if any of that was killing bart or not, but if so, it seemed like something was flaring it more than killing it...if Bart is the culprit.

The Septra will kill some bart - but not like the Rifabutin... So you will likely get hit hard on the Persisters/bart protocol.
Posted 4/8/2020 3:19 PM (GMT 0)
If the Mepron was flaring Bart, perhaps the combo of Bart flaring and bugs dying was just too much for me.
Posted 4/9/2020 2:49 AM (GMT 0)
I took drugs that would flare bart (mepron, depakote, disulfiram) and once the bart became active, I would kill it with minocycline.

The problem with this is that dead bart caused a horrible herx with a lot of painful diarrhea. It took several months to get the bartonella down enough to tolerate the detox.
Posted 4/9/2020 4:11 PM (GMT 0)
That was something that came to my mind. Flare the Bart with Mepron and then take something to kill it. That would probably only be done sometime in the future if thought it was necessary. Right now, not sure I can tolerate the "flaring" part. Lord willing, the Lyme Bart protocol will do some good. Just have to take it step by step and see how it goes.
Posted 4/11/2020 12:53 AM (GMT 0)
Quin, you said "It took several months to get the bartonella down enough to tolerate the detox."

Can you explain a little what you mean by this? Thanks.
Posted 4/12/2020 12:42 PM (GMT 0)
Killing bartonella caused a really bad herx. It took several months before I got the bartonella down enough that I could tolerate full doses of antibiotics and really go after the borrelia.
Posted 4/12/2020 11:08 PM (GMT 0)

ChristianWithLyme said...
Have had a hard time on Lyme Babesia part A which my LLPA says is unusual. Haven't been able to pull out of it, and it was getting harder and harder to tolerate the doses. LLPA says she hasn't heard Dr. J mention anything about this Part A flaring anything. I've also been the same or worse on weeks off which LLPA thought was different as well.

Do you have known or possible issues with mold? I can’t remember. If you haven’t had mycotoxin testing or looked into mold exposure, this might be a cause.

Just so you’re aware, mold and bartonella can be hard to tease apart, as they overlap extensively. If you have both, it can be a real doozy.

Post Edited (WalkingbyFaith) : 4/12/2020 5:11:07 PM (GMT-6)

Posted 4/13/2020 5:20 PM (GMT 0)
Thanks, Quin. Started Lyme/Bart protocol today with only half dose of Rifabutin so we'll see how things go. LLPA wants me to take it slow.

WalkingbyFaith, I did a Great Plains urine test last year and had higher levels of two molds. They were in high range but not real high based on some things I've read. We had some mold in our house that we've been able to eliminate by moving furniture and allowing proper ventilation. Also, use air purifiers in house and dehumidifier in basement.

I'm inclined to think most, if not all, of my symptoms are Bartonella (and probably Borellia/Babesia also) because when I treated with ABX last year, it seemed like all symptoms were improving. I was really making some good progress but relapsed when taken off ABX. My previous doctor was suspicious that remaining symptoms were mold, but I am not convinced based on how I responded to ABX and what symptoms were improving. Is mold an issue at all? It's possible but at this point, I think I should actively pursue this Lyme/Bart protocol and see how it goes.

Thanks!
Posted 4/13/2020 5:29 PM (GMT 0)
What exactly are everyone's symptoms with Bartonella? I started Azithromyacin last Dec and now 1 month on Rifampin...was supposed to do blood work again to check on liver and Bartonella.
Posted 4/13/2020 6:30 PM (GMT 0)
Symptoms of bartonella:

Rash
Stretch marks
Bloody nose
Itching
Bad odor
Short of breath
Low protein in blood
Increased vitamin B6 in blood
Increased bilirubin & dark urine
Herx caused fever, abdominal bloating, cramps, diarrhea
Posted 4/13/2020 6:38 PM (GMT 0)
Sore heels is a hallmark symptom of Bartonella. I've had those in the past but not as much if at all now. Seems like I've had some slight foot soreness lately (bottoms).

I think my various nerve issues may be Bartonella - numbness, tingling.

Possibly the bloating, frequent urination, sensitivity to smells, activity intolerance, what seems like sun sensitivity at times.

I've got foggy brain, hard to concentrate, memory loss that could be Bart.

Other symptoms I have are tight neck and head, dizziness at times, fatigue, etc. Not sure what all is from what.
As was mentioned earlier, mold toxicity can be similar to Bartonella. Based on my past and how I've responded to ABX, I tend to think Bart is more of my problem than mold.
Posted 4/13/2020 7:12 PM (GMT 0)
Thank you for info!
Posted 4/13/2020 7:21 PM (GMT 0)
Foot pain (usually the bottoms), rib pain , swollen lymph nodes (can also be any infection), rashes - one in particular - is the stripes/stretch marks, anxiety, twitches, tremors, muscle pain, memory loss, burning/shooting pains,
plus many more.
Posted 4/19/2020 7:31 PM (GMT 0)
My most debilitating symptom that I’ve been dealing with for last couple weeks is a constant chest tightness/vibrations or trembling/shaking with heart palpitations, nervousness/anxiety, air hunger.
Also have or had in last few months...
Brain fog
Irritability
Mood swings
Dry/burning/irritated eyes, that look bloodshot and dilated. Feels like I have a layer over my eyes. My vision has gotten worse. Lots of floaters and I sometimes see shadows out of my side vision.
Congestion in sinuses and ears.
Feeling uncoordinated and clumsy, drop a lot of things and my driving is off.
Sore throats on and off
Swollen/painful lymph nodes
Painful/tight tendons
Inflammation and pain in my ribs
Digestive issues, constipation/bloating/gas/indigestion/heartburn/
burping
Bladder issues, painful/sensitive/overactive
Kidney pain
Tons of food sensitivities
Flushing/skin burning(feels like severe sunburn) on upper body
Constant chills and goosebumps
Wasting-lost most of my mass, feel frail, just skin and bones
Hair is falling out
My nails are gross, with ridges and lines
Issues with my electrolytes
Constant dry cracked/peeling lips
Tired but constantly restless
Fear/panic attacks
Obviously trouble sleeping and eating with all that

Anybody else experience any of these symptoms
with Bartonella and RMSF...?
Posted 4/19/2020 7:39 PM (GMT 0)
constant chest tightness/vibrations YES
or trembling/shaking with heart palpitations, nervousness/anxiety, air hunger. YES - minus heart palps
Also have or had in last few months...
Brain fog YES
Irritability YES
Mood swings
Dry/burning/irritated eyes, that look bloodshot and dilated. Feels like I have a layer over my eyes. My vision has gotten worse. Lots of floaters and I sometimes see shadows out of my side vision.
Congestion in sinuses and ears.
Feeling uncoordinated and clumsy, drop a lot of things and my driving is off.
Sore throats on and off
Swollen/painful lymph nodes YES
Painful/tight tendons
Inflammation and pain in ribs YES
Digestive issues, constipation/bloating/gas/ YES
burping
Bladder issues, painful/sensitive/overactive
Kidney pain
Tons of food sensitivities
Flushing/skin burning(feels like severe sunburn) on upper body
Constant chills ,goosebumps YES
Wasting-lost most of my mass, feel frail, just skin and bones YES
Hair is falling out
My nails are gross, with ridges and lines YES
Issues with my electrolytes
Constant dry cracked/peeling lips
Tired but constantly restless
Fear/panic attacks YES
Obviously trouble sleeping and eating with all that
Posted 4/19/2020 8:01 PM (GMT 0)
Crystal,

Your symptom list sounds like you may also have serious toxic mold exposure. Have you looked into mold?
Posted 4/19/2020 10:21 PM (GMT 0)
Cryatal,

Mold and Bartonella can look a lot alike. Have you done a urine test for mycotoxins, an ERMI mold test of your home, or the chronic inflammatory response syndrome (CIRS) blood tests? Whether it's mold or Bartonella causing your issues, you might want to look into the book Toxic by Neil Nathan; it discusses in detail how to figure out where to start when your system is very sensitive and reactive. What sort of treatment have you been using so far?
Posted 4/20/2020 1:50 PM (GMT 0)
Crystal5628, I've had a lot of your symptoms, and most if not all improved with Lyme and Bartonella treatment. Noticed good improvement on Rifampin. I relapsed and am now fighting it again.
Posted 4/20/2020 7:34 PM (GMT 0)
I’ve been thinking a lot about this lately. I have very similar symptoms as ChristianwithLyme. It started in our old home. Since then we moved (3 yrs now) to a new home that I tested with ERMI - totally clean. We also sold our lake house over 6 months ago (Did have aspergillus). I’ve taken lots of binders (takesumi, zeobind, gi detox, some CSM). My symptoms are not significantly different. It’s crazy how similar bart & mold are.

But my symptoms do fluctuate, which I’m wondering, if it was mold would it do that? I also have chemical sensitivities - which no surprise, big triggers are bart or mold.

Post Edited (k07) : 4/22/2020 5:49:29 PM (GMT-6)

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