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Bartonella treatment?


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OK, after over 10 years of "PANDAS/PANS" symptoms, our dd ended up getting the reddish-purple Bartonella rash streaks. Out of the blue. I always wondered about Bartonella for her, as I had "cat scratch fever" right before I got pregnant with her, and she has always been highly anxious, panicky, OCD, etc. But she has never had the physical signs until now. Don't know if the plasma exchange somehow brought the rash out (she had that about 2-3 months before the rashes started), or the IV Rocephin she did for Lyme (about a month before the rashes showed up.)

 

So her NP has agreed to treat the Lyme/Bartonella more aggressively (she never tried a combo before, always one at a time), but I'm worried this might not be the correct treatment. She has her on high dose IV Rocephin (she has a chest port), oral Doxycycline and grape seed extract.

 

Here's my concern: She's got the rashes for Bart, but the only abx I see being used regularly for Bart is Rifampin, and that is not one the NP has ordered. I hate for dd to go through all this treatment and not be using the correct abx. I'd love to hear what some of you think, as I actually suggested Rifampin as part of the combo, but the NP decided against it.

 

Any of you experienced in Bartonella treatment - I'd love for you to chime in. This NP has gone above and beyond, but my dd has suffered with this forever (she's almost 23 now), and I'd like to make sure we're treating correctly. Ugh!

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DD13 was treated with biaxin/rifampin for one year and then the LLMD added other abx to the mix because DD couldn't get past 80% improvement (malarone, tindamax, azithromycin, minocycline, plaquinel). When we weaned DD was still at 80%. The only significant improvement we saw with the additional abx was an improvement in cognition with malarone.

 

Frankly, Buhner's herbal bartonella protocol has worked better than abx ever did. Especially houttuynia which is pretty specific for that infection.

 

Buhner says that the protocol can be used along with antibiotic treatment, and will in fact decrease the likelihood of abx resistance developing.

 

http://buhnerhealinglyme.com/

 

BARTONELLA
Research is ongoing, this is the most up to date protocol:
• Sida acuta tincture (from
Woodland Essence or julie@gaianstudies.org) ¼ tsp 3x day for 30 days
• Hawthorn tincture, same
• Japanese knotweed, (tincture, same dose (from same sources as Sida acuta, above), or capsules from
Green Dragon Botanicals 2 capsules 3x daily)
• EGCG 400mg +- daily
• Houttuynia (Yu Xing Cao –
1st Chinese Herbs, powder – use “LYME” code at checkout for 10% off) 1 tbl daily
• L-arginine 5000 mg daily in divided doses
• Milk Thistle seed, standardized, 1200 mg daily
All for 30 days.

PLEASE NOTE: If you have active herpes, chicken pox, or shingles DO NOT USE L-arginine.

 

These recommended dosages are pretty high; we are only using 1/4 of what is suggested, except for Japanese knotweed which we use at full dosage.

 

We omit l-arginine entirely.

 

We did eventually discover that an negative-testing (through Igenex), asymptomatic babesia/protozoan infection was holding back DD's complete recovery from her bartonella/PANS symptoms.

 

On a whim I trialled a combination cryptolepis/sida/alchornea herbal tincture which produced immediate babesia herx symptoms (air hunger, chest pressure, sighing, dry cough, thigh pain), at which point DD was clinically diagnosed with babesia as well.

 

The addition of babesia herbs to the bartonella protocol has recovered her completely, although we remain on continuous low dose.

Edited by rowingmom
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  • 2 weeks later...

Thanks for this thread!!

 

What does the bartonella rash look like? My daughter, whom I highly suspect to have lyme, had a red streaky rash 8 years ago. It lasted about a month, and then disappeared. I have never seen anything like it on anyone since.

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Thanks for the responses! I apologize for not checking and getting back.

 

Our dd's rash started with streaks and an underlying rash on the left outside area of her breast. (Kinda freaked me out, my mom died of an aggressive form of breast cancer at 51, and her mother-my grandmother- had breast cancer, too.) The other ones have been on her arms or legs, and look very much like scratches (some 2-3 inches long) that are made up of tiny reddish purple dots. They last several days and go away. Her's don't look as much like stretch marks, as the lines aren't running in the directions you would expect, and they aren't on places you would expect.

 

She was inpatient (eating disorder) when they started, but none of the docs there knew what it was, so they ignored it! Ugh! I told dd to mention Bartonella, and one of the docs went ahead and looked into it, and came back and told her that was probably what it was, but did not suggest treating it. Once you are in an eating disorder facility, "talk" therapies are all you are going to get. And I'm sad to say I think of LOT of those patients are PANS - many have fears of vomiting or choking, etc. But the docs there aren't trained to look for physical causes - it's all "mental" in their mind. Very aggravating. They look at you like you have a second head if you say your dd's eating disorder started due to PANS.

 

But that's ANOTHER rant for another day!

 

Dd's rash has been gone since starting treatment, but NP has increased her to 2 grams, 2x a day of IV rocephin, plus GSE and 2 oral Doxy, 2x a day. We are having to back off because she has been puking since 4 am this morning, with a horrible headache. (Throwing up is horrible for her, as we still have more weight to get on her...)

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We've been at this for almost 6 years and ds 14 originally tested pos for Bart right from the beginning. Over the years I've seen little streaks here and there, but they'd fade very quickly. A few months ago he developed several large streaks on his back, and two docs confirmed this was a Bart rash. We started up treatment for Bart again - Rifampin 600mg, BAR-1 and BAR-2, but the rash/streaks didn't budge. Just today I saw that the rash on his back had expanded quite a bit - maybe covering 1/4-1/3 of the area of his back. It looks frightening, but I'm taking it as a good sign because his mood swings are MUCH better since we started refocusing on the Bart.

 

Did you ask her why she decided against Rifampin? I thought it was the abx of choice for Bartonella, but not 100% sure.

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Yes, I thought Rifampin was the drug of choice for Bart, too. She is a wonderful NP, but like many other "functional medicine" type professionals, is completely swamped and it is really hard to get in contact with her. (She isn't local, so appointments aren't that easy, either.) But none of the local docs believe in Lyme, Bart, PANDAS, etc., and an Infectious Disease specialist even told me there was no Lyme in Indiana. (Which both the state government AND the CDC say there is!)

 

Good grief, I can't figure out how docs can actually specialize in something and be so clueless. He even argued that my dd couldn't have tested positive for strep after being on 3-4 different abx for it, even though Mayo says that can happen with mono. (And he wouldn't contact the doc office to check the records that she had!) I'm getting really tired of having to do the research for these people, when I'm not making a dime... and some of them are living large.

 

We stopped the IV yesterday to give her body a break, and will start her on a lower dose. The 4 grams was just too much for her right now, and we can't mess around with any more weight loss.

 

BTW - just in case the other meds aren't hitting the Bart, I have started giving her the A Bart drops. Going to try them, and when we are out of those, try the Buehner herbs rowingmom mentioned.

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DD13 herxed badly with A-Bart. 1 drop of an increase was enough to cause shin pain, ice-pick headache and motor ticcing.

 

I managed to get it up to 25 drops 2x daily and did this for 8 months while on various abx.

 

Her bartonella and PANS symptoms declined but did not resolve until:

 

1) I started using Buhner's bartonella herbs which kept her at a better baseline than the A-Bart and abx had, and

2) I added in the additional babesia herbs.

 

Everyone is different and I hope A-Bart works for you. It wasn't enough to cure bartonella for DD, but perhaps that was because she was dealing with babesia as well. We never did trial A-Babs.

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I tried to check online for bartonella streak rash photos. They look like stretch marks, and not at all like what my daughter had. She had dark red streaks about 1/2 inch high and 4 inches long on her back and chest/abdomen. Unfortunately this was dismissed by my pediatrician and she has been suffering for a long long time. We recently realized that her "spaced out" personality was absence seizures. (they are gone now, or very minor). This is a real crash for me, I know bart is very difficult to treat. Coupled with the fact that she is refusing bloodwork adamantly. She does fit the symptom list, alot. Can anybody tell me that they are past bartonella, and their child is OK?

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Can anybody tell me that they are past bartonella, and their child is OK?

 

We are.

 

DD13's pain and psych symptoms ( as well as her PANS symptoms) are all gone. We continue on a low continuous dose of Buhner's herbal bartonella protocol in addition to a combination Cryptolepis/Sida/Alchornea tincture.

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