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Posted 4/24/2018 5:37 PM (GMT 0)
Dahlias,

Bartonella can cause a lot of the same symptoms as babesia including air hunger and sweating.
Posted 4/24/2018 5:58 PM (GMT 0)
I didn't know that, thank you!
Posted 4/24/2018 6:40 PM (GMT 0)
Dahlias, gosh sorry to hear this! I'm glad you got some results. I think the plan is good because doxy will show if there's Lyme - the stiff neck is often Lyme. JC has DS treating bart with rifampin and mino. Does your practitioner plan to treat with rifampin eventually?
Posted 4/24/2018 6:50 PM (GMT 0)
Thanks! Good point. I don't know what abx she uses yet. She seems to be interested in seeing how her patients want to proceed. (She does herbals as well as abx.)

I need to go research rifampin. I don't have a good understanding of that drug. How has it been for your ds? Can I ask what his symptoms are?
Posted 4/24/2018 6:57 PM (GMT 0)
Sure - it is hard to pinpoint which of his multitude went along with bart but there are a few that stand out: anxiety and a related psych issue (not comfortable putting it out there), he did have years of air hunger/breathing issues (but has/had myco/babs too). The anxiety stuff went away with treatment.

Most interesting was that a few weeks after he started rifampin, it was summer and he was shirtless and I noticed he had the classic bart stretch marks in the center mid-spine region - confirming that he had bart (he goes to JC in DC and they don't test for co-infections since the tests are so unreliable - DS had a CDC positive Lyme test from LabCorp/pediatrician though).

He hasn't had any side effects from the rifampin which is used to treat TB (also a breathing related disease) other than it makes his urine orange!

Let me know if there are any other questions or you can send me an email too.
Posted 4/24/2018 7:03 PM (GMT 0)
Thanks for sharing. I bet it was reassuring in a way to see those marks. I'll ask her if she's seen any marks, and I'll ask the doctor about rifampin when we get to combos.
Posted 4/24/2018 7:22 PM (GMT 0)
Also, like all co-infections, it can be stubborn but if it's the only one she has, it may be easier to take care of. I'd be interested to know what your person recommends for bart.
Posted 4/26/2018 2:42 PM (GMT 0)
I'm starting to question the idea of starting with doxy. If bart seems to be what's causing her symptoms, wouldn't it make sense to start with something that attacks that one?
Posted 4/26/2018 2:56 PM (GMT 0)

Dahlias said...
I'm starting to question the idea of starting with doxy. If bart seems to be what's causing her symptoms, wouldn't it make sense to start with something that attacks that one?

I'm not sure how LLMDs treat - if they treat infections one by one or simultaneously. I know for Bart, they usually prescribe 3 abx. Whether any of the 3 also treat Lyme or babesia I do not know. I'm sure Girlie could tell you.

I'm treating with herbs using Buhner's protocols and I'm taking herbs to treat everything simultaneously with the emphasis on bartonella.
Posted 4/26/2018 4:05 PM (GMT 0)
Thanks. I'm kind of worried about starting by stirring up the Lyme and then maybe we'll have those symptoms on top of the bart. sad
Posted 4/26/2018 5:22 PM (GMT 0)
I know Dahlias - I feel like everything gets stirred up when you're treating even if it's just one disease and there are others lurking. I would definitely ask her practitioner what the plan is. If DD is in school, maybe you can wait and hit it all harder during the summer?
Posted 4/26/2018 5:35 PM (GMT 0)
I do want to know the plan -- I feel like a pain, but I will bring it up before she starts the doxy. I did ask if she could wait until summer because she has 5 AP tests along with the SATs coming up, and the doctor agreed. In the meantime, we're starting with probiotics, detox and vitamin D.

I thought of one other symptom I don't think I ever listed here -- I'll call it frequent urination or urinary urgency. She needs to go every 90 minutes and becomes extremely anxious if she fears that she will not be allowed to go (one reason she hates long car rides with a passion and avoids drinking much water). This has been a major issue for her for years, and doctors don't know the cause and chalked it up to anxiety. I found this mentioned in a few threads -- I hope treatment solves that issue.

Sorry I am so scattered with this. My own Lyme brain is bad this week.

Post Edited (Dahlias) : 4/26/2018 11:44:55 AM (GMT-6)

Posted 4/26/2018 6:25 PM (GMT 0)

WalkingbyFaith said...

Dahlias said...
I'm starting to question the idea of starting with doxy. If bart seems to be what's causing her symptoms, wouldn't it make sense to start with something that attacks that one?

I'm not sure how LLMDs treat - if they treat infections one by one or simultaneously. I know for Bart, they usually prescribe 3 abx. Whether any of the 3 also treat Lyme or babesia I do not know. I'm sure Girlie could tell you.

I'm treating with herbs using Buhner's protocols and I'm taking herbs to treat everything simultaneously with the emphasis on bartonella.

I would say that many (most ?) LLMDs prescribe two abx for Bart. A Fluoroquinolone or rifampin/Rifabutin plus another one. Doxy alone isn't enough for Bart.
Some LLMDs don't prescribe the fluoro's - or if they do...its last resort.
Nah, they don't hit Babs - an Antimalarial/anti parasitic is needed: Mepron/Malarone are common meds - paired with an antibiotic.

Dr J clinic prescribes three abx to be taken but this is not daily dosing....and weeks off between cycles of abx.
From what I've seen..the J clinic hits babesia first (after a period of stabilization ) and then Bart.
Sometimes Bart and Babs together - if the patient is willing to take a Fluoroquinolone as it can be taken in same cycle as Mepron for Babs.
But rifampin and Mepron don't go together well.

But you already know this Dhalias. smile
Posted 4/26/2018 6:40 PM (GMT 0)

Dahlias said...
I do want to know the plan -- I feel like a pain, but I will bring it up before she starts the doxy. I did ask if she could wait until summer because she has 5 AP tests along with the SATs coming up, and the doctor agreed. In the meantime, we're starting with probiotics, detox and vitamin D.

I thought of one other symptom I don't think I ever listed here -- I'll call it frequent urination or urinary urgency. She needs to go every 90 minutes and becomes extremely anxious if she fears that she will not be allowed to go (one reason she hates long car rides with a passion and avoids drinking much water). This has been a major issue for her for years, and doctors don't know the cause and chalked it up to anxiety. I found this mentioned in a few threads -- I hope treatment solves that issue.

Sorry I am so scattered with this. My own Lyme brain is bad this week.

Frequent urination sounds like Bart. Had the same issues and was just like your daughter my whole life until my chronic symptoms exploded at age 39. Then, that symptom went away and was replaced by a multitude of symptoms.

Post Edited (WalkingbyFaith) : 4/26/2018 12:43:52 PM (GMT-6)

Posted 4/26/2018 6:54 PM (GMT 0)

WalkingbyFaith said...

Frequent urination sounds like Bart. Had the same issues and was just like your daughter my whole life until my chronic symptoms exploded at age 39. Then, that symptom went away and was replaced by a multitude of symptoms.

Wow. Well, it would be lovely if treatment solves all of these things.
Posted 4/26/2018 7:00 PM (GMT 0)
Dahlias,

If you're not ready to put her on abx yet, you could always start with a few herbs - tiny doses though.
Posted 4/26/2018 7:23 PM (GMT 0)
I had urinary urgency early on - would barely make it to the bathroom on time.

It resolved really early on in treatment.
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