Do you seem to be making any progress against your bartonella?
Hubby is still struggling and doesn't seem to be making much headway. Currently on 900 mg Rifampin, plus Minocycline, and pulsing both low dose Zithromax and low dose Clindamycin. Also taking Stephania tincture and many herbal things. Has been on Rifampin now for 4 months (3 months at 600 mg and 1 month at 900 mg). Have an LLMD appointment on 3/3 and am at a loss as to what else to suggest to LLMD.
Hubby has done Levaquin and Factive and HH. Any suggestions?
The main symptoms continue to be elevated bilirubin and low red blood count and low white blood count plus spells that wake him most nights (shaking with some mild sweats and coughing or dry heaves). Overall body and tendon aches much worse at night as well.
Thanks.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Thanks
Posts: 819 | From East Coast | Registered: Apr 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Gosh Bea,
It sounds like it has been rough lately. I also tried to PM you a while ago. Your hubby is on some pretty heavy duty doses. Maybe he needs a bit of a break from all the medicine.
Why do you say that he still has bart is it certain symptoms or is it a positive test? Maybe it's Babs he's dealing with?
Posts: 2232 | From USA | Registered: Aug 2009
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Hubby has been treating for about 6 years now -- for the first 3 or 4 years he could only tolerate one med at a time and we took several breaks due to finances and other reasons. But now since we thought the babesia was gone he can take multiple meds -- has been continuously on multiple meds for 27 months. Any time we drop a med or herb hubby seems to get worse.
Ever since we started trying to treat for bart or whatever this mystery pathogen is in December, 2007 it just seems like nothing he takes is strong enough to wipe out this infection. With new meds he will feel some improvement for a couple of weeks and bloodwork may improve -- red count goes up and bilirubin goes down -- but it doesn't last. Just seems like this infection continues to kill off red blood cells and becomes resistant to meds.
Do not think it is babesia -- hubby's seizure-like spells are so much milder than in the past, sweats much less severe, is able to exercise and does not have the dizzy off-balance symptoms he had with babesia.
Hubby has never had positive antibody tests for any tickborne infection. He had 2 positive bloodslides from F lab for haemobartonella or mycoplasma and a positve bloodslide from Clongen in 2008 (after Levaquin) for the mystery pathogen (motile gram negative bacteria).
I think the other bart meds I have seen mentioned are either much more toxic such as Gentamycin or terribly expensive like IV Vancomycin. Just not sure what direction to go in.
Hubby did have a fever when switching from 600 mg to 900 mg of Rifampin -- pretty sure that was a bart herx. Also ran a fever when I increased the Stephania from 3 droppers 3 times a day to 4 droppers 3 times a day.
Hubby also took Bactrim and Alinia both for about a year so we have tried that as well. And to make totally sure the babs was gone we did a couple of months of Daraprim after that.
Will post after LLMD appointment. Don't expect him to make any major changes in meds, but every now and then the doc surprises us and does something unexpected. Orignially he planned on 6 months of Rifampin and we aren't there yet. May drop the Clindamycin though as it didn't seem to help like it had in the past when treating babs.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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