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Posted 9/10/2019 2:36 PM (GMT 0)
I just received my new protocol, things are getting more and more complicated, so I'd like your opinion on a couple things.

First, here is the proposed protocol:

day 1-8 with Xylitol and lactoferrin (holding for the first cycle).

On week 1 : 3 times a week with amoxicillin (500MG BID), Bactrim DS, Malarone (4 tabs BID), Enula (10 drops BID) and cryptolepis (40 drops BID), on Thursday and Saturday dosing Flagyl (500MG BID) and Diflucan (200MG BID).

On week 2: 3 times a week with Bactrim DS and Minocin (100MG BID), Monday through Friday with Malarone (4 tabs BID), Enula (10 drops BID) and cryptolepis (40 drops BID), on Thursday and Saturday dosing Flagyl.

On week 3 and 4: OFF ABX

My questions:
1) have anyone heard of a protocol including Malarone 4 tabs BID (250/100)?. That seems like a awful lot of Malarone to me.

2) The fact that there is one day of the week2 (Tuesday), that I take malarone alone without other ABX, should I be worried about ABX resistance?

3) When it comes to Xylithol and lactoferin. Is there a specific brand you guys would recommend?

Thank you so much for your help,
Posted 9/10/2019 3:19 PM (GMT 0)
Hey Alxander

Only have time for a quick response now -

When I was on Mepron (same clinic as you) it was 2 tsp twice daily which is double most llmd’s prescribe.
So that is his standard for treating Babs with Atovaquone.

No I don’t think one day on malarone by itself will create resistance.

I bought my xylitol from our health food store .
Lactoferrin from Amazon AOR brand which ive heard is s reputable company.
Posted 9/10/2019 3:44 PM (GMT 0)
oh look its that boring Dr. J protocol again LOL.

#1 yes i've heard of people taking that much malarone its fine
#2 no don't worry about abx resistence
#3 get xylitol made from birch trees NOT corn. lactoferrin is good from most places just non-GMO
Posted 9/10/2019 6:24 PM (GMT 0)
My doctor recommended that much malarone, but I started with half that, and unfortunately had a bad reaction (see my other post). I don't know what caused the hemolysis, but I suspect I might have gotten a flare up of bartonella.

Bartonella has a tendency to flare up and become active when hit with antibiotics that it is resistant to. If you're taking malarone, amoxicillin, or anything that bartonella might be resistant to, make sure you're also taking minocycline or bactrim, which more reliably kill bartonella.

Be careful with bactrim as it has a tendency to interfere with kidney function, particularly related to sodium and creatinine. You might want to start with a half dose (rather than bactrim DS) just to make sure you don't have any problems with it.

Definitely get labs done regularly if you're doing this. In addition to CBC/CMP, you should probably test iron and magnesium to check for red blood cell loss. Also vitamin B6, as that can be a marker of bacterial metabolism (especially bartonella). My doctor also ordered ammonia tests, but Quest Diagnostics screwed up so many of them that the results weren't useful. The blood sample for the ammonia test is supposed to be centrifuged and frozen immediately, so make sure your phlebotomist knows that.
Posted 9/10/2019 6:48 PM (GMT 0)
Thanks for the much appreciated reply guys!

Rikky1 - Boring protocol... is that a good or bad thing? haha

Quin: Very interesting: I do monthly labwork for kidney and liver (had elevated enzymes since getting sick). Also note that my Iron level are too high. A genomic doctor I saw said it was probably due to a gene I have that makes me absorb Iron too much. Could the high iron be caused by something else that you mention here?
Posted 9/10/2019 6:58 PM (GMT 0)
Bartonella and babesia tend to destroy red blood cells, which would make iron go down, and bilirubin go up.

The CMP test includes bilirubin. I've had it come up high a few times, but it tends to be hit and miss. If you're doing labs only once a month they might miss it.

I would assume that high iron is something unrelated to the infection. Mine never came up high.
Posted 9/10/2019 7:31 PM (GMT 0)
Quin - The ammonia test blood sample needs to be cold - ie put on ice until they can refrigerate it.

That’s what I had read when I had mine done.
Not frozen tho.
Posted 9/10/2019 9:37 PM (GMT 0)
Maybe the ammonia needs to be refrigerated, not frozen, I don't remember. I just know that Quest Diagnostics messed up several times, so make sure the phlebotomist looks it up if they're unsure.

Also, malarone, and possibly bactrim, lowered my folate, so make sure you're getting that checked too.
Posted 9/10/2019 9:57 PM (GMT 0)
Girlie:
It says Xylithol 2 TSP + lactoferin 500MG

Do you take those BID or just once?
And is there a best way to take the xylithol? You just put it in a coffee or do you use it in food instead?
Posted 9/10/2019 10:15 PM (GMT 0)

Alxander said...
Girlie:
It says Xylithol 2 TSP + lactoferin 500MG

Do you take those BID or just once?
And is there a best way to take the xylithol? You just put it in a coffee or do you use it in food instead?

I take it once - first thing in the morning. I stirred (and stirred and stirred... it takes awhile to dissolve) the xylitol into about 1/4 cup of water and took my lactoferrin with it.

I don’t know if that’s what others’ do tho.
I don’t think I was given instructions.

Then I waited to run to the bathroom.... (TMI)
Posted 9/10/2019 10:23 PM (GMT 0)

Quin said...
Also vitamin B6, as that can be a marker of bacterial metabolism (especially bartonella).

Quin can you tell me what this means? I just tested my B6 in relation to neuropathy - it came back really high and I'm trying to figure out why.
Posted 9/11/2019 12:31 AM (GMT 0)

UpBeetLiving said...
Quin can you tell me what this means? I just tested my B6 in relation to neuropathy - it came back really high and I'm trying to figure out why.

Certain bacteria produce vitamin B6, and increased B6 in the blood can be a sign of infection. Many bacterial species can do this, but among tick-borne diseases, bartonella is the primary suspect.

https://www.healingwell.com/community/default.aspx?f=30&m=4138409
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