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My updated protocol - mino/plaq/rif/bactrim

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Posted 5/5/2017 5:48 PM (GMT 0)
I had a phone call with my doc and added in bactrim (instead of dapsone). He says bactrim hits persisters too. I am nervous about the side effects of dapsone so we are giving this a whirl. So I am on: Mino (100 mg bid), Plaquenil (bid), Rifampin (300 mg bid) and Bactrim (bid). Also taking a lot of supps for detox (nac, ala, brocc extract, glutathione, phosphatidylcholine, welchol, and more), vitamins/minerals, probiotics, nystatin, toprol (high heart rate), licorice root, rhodiola, ashwaghanda, lions mane.

I'm probably missing some. I can't stand taking all this. I added in the bactrim a few days ago and have had no noticeable effects YET. I do get irritable bladder/urethra from antibiotics in general. But I don't think this is a herx. I believe I had damage to my bladder/urethra when I used monistat 1 for a yeast infection 2 years ago. It was unbelievably painful - felt like acid up in there. The next day I started having urinary issues.

The plan is if in 1 month I am not noticing anything better on this protocol than this mix is not working for me. The only other bart drugs to try are quinolones and he asked me to think about it. I don't think I'm willing to go down that road. So, my plan is to go strictly herbal - probably byron white. I may ask about trying a babesia med since I have only tried CSA.

We also established that I appear to be chemically sensitive and some of my symptoms may be related to that (since I feel better when I leave our house).

Do you all think I should notice something with this antibiotic mix? It seems like it should steam roll me if I have a hefty load of bacteria.

Symptom list: numbness, internal buzzing, fatigue, insomnia (off and on), memory problems, frequent urination (some burning), cold extremities, tinnitus, high heart rate/low bp (mild POTS), lump/pressure in throat, mild joint ache in morning (toes, top of feet, hands), and more that are not a big deal. Really the throat thing is my most bothersome issue.

Post Edited (k07) : 5/5/2017 11:57:19 AM (GMT-6)

Posted 5/5/2017 6:03 PM (GMT 0)
I don't think a month is long enough to know if the added bactrim is working. Maybe give it two months to see if you herx?
Most of us would definitely be 'feeling' that combination.
How long did you give the mino, Rifampin combination? no response at all?


Do you have a lab test confirmed bartonella infection...or is it a clinical diagnosis?

You are seeing Dr. H., right?
Posted 5/5/2017 6:15 PM (GMT 0)
Yes that is who I see. He said only a month before switching it up. I started mino/plaq in March. Added rifampin early April. I had low positive IGG for bart. However, 8 months before that i had a positive brucella and negative bart. Then when bart was positive brucella was neg. Go figure. I'm starting to doubt all testing! It's through a diff lab too - BioReference). He also had me do bart FISH through Igenex again and it was neg.
Posted 5/5/2017 6:19 PM (GMT 0)
Well you are in good hands...that's for sure.

I am surprised about the one month...for some people it does take longer to either herx...or feel an improvement.
Did you do the 300 twice daily of Rifampin? I did that for a year...and then when I switched to 600 once daily...I herxed.

Has he discussed Babesia treatment?
Posted 5/5/2017 6:44 PM (GMT 0)
He does not think I have babesia. I'm doing 300 mg twice a day but I may try the 600 just to see if anything happens.
Posted 5/5/2017 6:57 PM (GMT 0)
i'm sure Dr. H. will figure it out... just may take some more trials of different antibiotics.

I bet if lyme and bart meds don't work...he will do a trial of babs meds.

It's so hard to stay focussed on treatment when we expect to see something...and nothing happens.

Hang in there K07....Dr. H has seen a lot of patients over the years....he'll get you on track.
Posted 5/5/2017 7:03 PM (GMT 0)
Yeah, I guess so. If it is in fact lyme causing the majority of my symptoms. Time will tell.
Posted 5/5/2017 8:15 PM (GMT 0)
My old LLMD gave things a month and if no change we mixed it up. Not sure if I agree with this but that what his approach.

Yes that mix should knock you on your face.

Brucella and Bartonella are both gram negative double cell wall bacteria that combination should hit either one quite effectively.

I tried Cipro and Levaquin both gave me neuropathy and tendon issues so had to stop. Really angry about it because I know its hits Bart hard for me it hit it harder than Rifampin or Rifabutin.

I see Dr. J in DC in 2 weeks I'm going to push for dapsone or vancomycin as I've burned through the other abx that treat bart. Only thing different I could do is try Dr. J's pulsing protocol with Bart meds and/or just do Rifampin or Rifabutin longer.

That's a ton of supplements my old LLMD had me on all sorts of things and I just got tired of it and simplified it I'm only on maybe 4 things now and I feel no different. Go figure.
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