Anyone treat bartonella imporically?

It seems for bart there may not be a definitve test. I sometimes get scratches show up once in a while over the past year which I thought were from parasites like nematodes now I wonder if it could be bart. Also feel stuff around my neck and even top of my head despite having clean mri's. May ask llmd about this on a follow up visit.

Anyone think trying a bart treatment could make sense?

Thanks

cccmama3000 -

Would you care to share your successful bart treatment?

thanks if you do

same here... never had a positive bart nor babs test. But treated Babs first for 5 months, then went after Bart for 3 months, then stopped with elevated AST/ALT enzymes. Then went back to babs for another 1 year plus. After thinking we had a mepron resistant strain of Babs we went the herbal route with little success.

Last fall of 2013, we decided to take on more swipe at Bart, which my LLMD said it may be the reason or holding back my babs treatment. The Rifampin, Plaquenil and Mino combo hit Bart hard and herxed severely for two months, but then saw good improvements from 50% up to 80-85%. Since then I've plateaued, and just started Levaquin.

Moral to the story is symptoms overlap so much you need to rotate treatment occasionally to see what disease is in the forefront, regardless of test results. Brian Rasner writes "just because a treatment protocol doesn't work initially, doesn't mean it won't work in the future when the disease is more active."

Ccc mama

How much better do you feel? Did the IV make a big difference?

I've been on orals for 2 months with no improvement. I just started rifampin today, so hopefully it helps.

Yay ccc mama! You are doing GREAT! That is so wonderful! I'm going to track your progress, so please keep posting!

Some of our symptoms are the same. My symptoms in order of worst being first:

Anxiety/panic
Arm/leg weakness
Brain fog, can't think, poor memory
Fatigue/ low motivation
Insomnia
Achiness
Hair loss

I pretty much feel like crap! Lol.

Did the orals help you at all? How much better were you after a year on orals? Why did you wait so long to do the PICC?

Wow! That is a bad herx, Tickbite! How were you able to function for 2 months feeling that badly?

600 mg rifampin sounds like a lot. Is that the usual dose people take? My LLMD started me at 150 and I will work up to 450.

At that point I was already 50% back to normal, with all joint pain and stiffness resolved, and greatly improved gut issues. So the neuro herx was more like a temporary setback and confirmed we were hitting bart hard.

600 mg of Rifampin is pretty standard dose for those who tolerate it OK. I think in Dr S's book Lyme Disease Solutions he recommend this dose, but to start out at 1/2 dose for a week or two first to see how you react. My first time on Rif (at same dosage) it was paired with Zith and Doxy, and the reaction was not as severe.

hang in there

Berean,

Initially it is difficult to tell the difference between between a herx, periodic symptom flare, or worsening of the infection(s). A herx is just a sudden release of toxins resulting from the ABX killing the bacteria. This does occur naturally as the bacteria goes thru its normal life cycle, but is more gradual. I have been in treatment now for close to 5 years, and have experienced lots of improvements, setbacks, and adverse reactions to new treatment protocols. Sometimes you just don't know what is working or if you are just getting worse. The brain fog is the worse, especially trying to hold on to a job, but it will get better.


If you can tolerate the ABX start the azith/rifampin/plquenil combo, just add only one new item per week and see how you react. The triple regimen is appropriate for the level of infection(s) we have. After two months or so try adding in Sida Acuta, or the CSA blend from woodland essence, just start slowly with a few drops per day and increase to 1/4 tsp 3x/day. Cat's Claw and Japanese Knotweed, and Cordyceps are also worth consideration.

Nystatin stays localized in the gut, while Diflucan is stronger and gets into the blood system to treat systemic candida overgrowth. I have been using Nystatin pretty much continuously as a preventive measure. I do take a break from ABX every so often and take only Diflucan for 30 days to help clean my system. Some say Diflucan also hits Lyme and acts as a cyst buster. Also a candida infection has similar symptoms to Lyme and co's (especially brain fog) so it's tough to really know the cause. Candida tests are also poor indicators, but I do test often anyway.

Hope this helps and keep us posted on your progress.

Post Edited (tickbite666) : 12/3/2014 5:19:47 AM (GMT-7)

Tickbite

You always give such great info! Thank you!!

berean—

Want to echo tickbite's comments on the antifungals. If you can stay away from the systemic anti-fungals (Diflucan, Keotoconazole) please do. They are very hard on your liver. If you do go on them, you need to have your liver enzymes checked and treat with milk thistle seed and/or burdock root if they are elevated). If you don't seem to have a systemic yeast or fungal issue and are just starting out w/ abx, a local GI anti fungal should be sufficient.

But you can take Nystatin long term without much impact. I have never read that they cause/contribute to leaky gut—just the opposite. Leaky gut is caused by damage done to the mucosal lining that allows toxins from the foods you're digesting to leak through the intestinal wall and into your body and blood stream (causing your immune system to identify the toxins as "foreign" and that's how you develop food sensitivities to what you're eating). Yeast and fungal overgrowth are a main cause of leaky gut—the yeast develops roots that burrow into the lining and eventually pokes holes through it. So, Nystatin is a very common treatment for leaky gut. The BEST form of Nystatin is the pure powder form (1,000,000 units—not the weak stuff)—without all the fillers included (some which includes sugar, if you can believe that). The powder form is added to water that you can swish around in your mouth, coating your mouth, throat, and upper GI when you swallow it… VERY effective. I had little reaction to expensive Nystatin capsules until I switched to the pure powder. Overnight results.

Also echo chloe24's mention of levaquin—everyone in my family is allergic to it, thankfully. For many people it is a very dangerous abx…

-p

Thx so much for your feedback!