Update - Dr. J Protocol - Bartonella

Yes, I’ve done 3 urine tests! First one with realtime labs, positive for gliotoxin. Treated with welchol & retested negative. Tested with Great Plains last year, positive Ochratoxin A. Have treated with more binders, no change, have not retested.

I treated bart for a short period with rifampin, mino, bactrim, plaquenil. Actually didn’t have bad or good changes with it. But was only a few months. Usually abx flare my bladder, but didn’t happen that time. So maybe that was good.

I’ve done LDI/LDA too. Which antigen made you feel worse? Strangely the environmental/chemical LDA would flare my neuropathy like crazy.

I do feel like I’m not as foggy as I used to be in our old house. I would have days where I would feel like I was drunk - maybe it was depersonalization. And a lot more eye headaches there. I’ve read that sometimes you need to treat with an antifungal like itraconazole to clear mold. So it’s either mold or bart but no easy way to find out and no clearcut/easy treatment for either.

I treated marcons with nasal spray (BEG). Is that what you were asking? I didn’t feel different with treatment and retested negative to be sure it worked. I recently tested again and it’s positive again but i haven’t treated. I tested again bc I have horrible itching deep in my sinuses at night.

Thank you all for your responses. I have not checked for mold. I have read the book toxic. I know I was diagnosed with Bartonella, RMSF, EBV. This has been scary and debilitating to say the least. I was starting to feel better a week into treatment but then got way worse. And feel like My body has been stuck in this overstimulated state for weeks now. Also thinking herx or mast cell syndrome?? What do you think...
I will have to look further into mold as well.

Thought I would give an update.

Short recap:

Lyme Induction (Azithromycin, Minocycline, Omnicef, Flagyl):

Didn't react very strongly at first but went into a big herx/flare in third week following the Flagyl. When recovered from the herx/flare, I had some overall definite improvement but no major improvement. The Flagyl was what gave me the biggest reaction (as noted later, the Flagyl reaction may not have been die off). Had higher liver enzymes. 9 weeks.

Lyme/Babesia protocol (Mepron, Omnicef, Septra DS, Cryptolepis, Enula, Artemisinin, Flagyl):

Seemed to react in different way upon first day of protocol. It was a more definite reaction but as progressed with protocol, all these different symptoms kept coming out, and it was like they were just going around in circles, like it wasn't die off but just continual flaring. Seemed like Bart symptoms. By the time my LLPA and I decided to stop and switch to Lyme/Bart protocol, I had gotten pretty bad with some scary head/spaced out symptoms and also worse trembly/shaky spells. Took two weeks off before next protocol and calmed down perhaps a little but still worse. Liver enzymes good on this protocol. about 3 months duration?

Lyme/Bart protocol (Rifabutin, Cipro, Septra DS, Onmicef, Flagyl):

Started at lower dose but have just done 2nd round at full dose minus the Flagyl. Have seemed to herx from the Bart ABX, but this round was tolerable and I don't feel like the Bart ABX are sending me into big flares but perhaps are killing. I had a bad herx the first round, but it calmed down and probably did me some good, as I am no longer having the scary symptoms. Liver enzymes a little higher but not out of range.

It seems that the Flagyl is causing my bart symptoms to flare but is not really killing it, and perhaps this is why I am feeling so bad on my weeks off. I took a half dose of Flagyl in first Lyme/Bart round and had a flare halfway through first week off. This flare lasted awhile and may have calmed a little before I started my 2nd round of ABX but with no noted improvement. I decided to not take the Flagyl for this second round and see whether I flare again in this coming week off. If I don't, I may ask my LLPA if I can take the Flagyl at end of first week of ABX so that hopefully the second week of ABX will kill what was flared.

These are just some observations. In my case, it seems like some anti-parasitics like Mepron, Flagyl, Cryptolepis, etc. might flare the bart and make treatment more productive if I am taking good bart-killing ABX at the same time.

Thoughts always welcome!

Zbreezy said...
Christian, Girlie and others who have treated Bart with Rifampin, Mino/Doxy, azith etc combo could you share how long you treated for and your experience?

I am 3 weeks into Rifamp and a few days into doxy and while the start is rough I'm seeing a little light occasionally. I will double the dose once I feel comfortable as per rif dropping doxy levels etc. I plan on treating via the go until no symptoms and then 2 months more. I also plan to rotate dapsone and azax with rif and Mino the pillars. Thanks in advance.

“ Rifampin, Mino/Doxy, azith etc combo”

I took Rifampin with mino - for a long time - over a year. It eliminated a lot of symptoms.

I have more recently treated with Rifabutin, mino, ceftin, Dapsone and daraprim - ala Dr J and it hit me harder than the first protocol.

I find Rifabutin to be stronger than the Rifampin.

Wbf - yes, I did VIP for a little bit. Not sure why, but I was nervous about it. The doc I was seeing didn’t fully follow Shoemaker protocol. I was also still visiting our lakehouse that had mold a few times a year.

Yup - that has happened to me - after finishing - continued to feel worse.

I think the dieoff keeps building and takes awhile for your body to rid the toxins.

Rifabutin has a long half life - something like 40 hours - so it’s building in your bloodstream - and takes awhile to leave after you’ve stopped taking it

As noted in other threads, It seems like I'll have to take a different path in treating bart, as the Dr. J protocol doesn't seem to be working well. Thought I would explain a little what has happened and see if you have any thoughts about it.

First Lyme/Bart round, seemed to herx real bad and skipped a day because of feeling so bad. Didn't know if I was going to be able to tolerate it. Calmed down and even felt a little better and finished my second week (mostly half dose). Then I took Flagyl at end of first round and that flared me, and I seemed to lose what I had gained.

Anyway, after herxing that first round I feel like I didn't really herx that way (in rounds two and three) anymore but that I was being affected. Now it seems like after that first herx that I was getting worse instead of better overall. I was reacting but not killing?

Is it because I became quickly resistant or because the bart is so resilient and able to hide?

If you do become "resistant" to a med, could that same med work later? I know this resistant to meds idea is a debated topic.

My experience makes me lean toward an every day, start low and build treatment instead of the high-dose, pulsed protocol. Still praying about it.

Thoughts welcome.

I did two cycles and started a week of the third but then quit because I was worsening and had a bad spell.

The Rifabutin was 150mg 2x day (pulsed), and I wasn't taking Minocycline. It's possible I just can't tolerate Rifabutin at this point.

I do hope to have an appointment with my LLPA soon to discuss.

I too believe the bart may just be persistent and not resistant. I've been harder to treat since I relapsed last year.

So is DrJ on board with you doing DrM’s protocol for bart?
Or are you just going rogue?

.. are you adding it to Dr J’s protocol?

She’s still working at the J clinic -right?
(AW)