Posted 5/20/2016 3:04 PM (GMT 0)
As of December of last year (2015), K has been completely asymptomatic, I was asymptomatic long before that.
It took a while for me to figure out that PUFA's (including CLO, fish oil and hemp oil) were all responsible for her propensity for motor ticcing (Tourette's). She is good with grass fed butter, coconut oil and olive oil.
Her ADHD, Tourette's, Asperger's, PANS/PANDAS, physical and psychological symptoms of bartonella have all resolved.
"Also did you, or are you still taking all the other Buhner recommended herbs for the bartonella? E.g. Ecgc, quercitin, l-arginine, milk thistle? Did you take ALL the buhner herbs? Isatis, alchornea, houttuynia, cordyceps, rhodiola, ashwaganda?"
We have not used EGCG (we drink 2-3 cups of green tea instead) or quercitin. I was leary of l-arginine because I was concerned that she may have viral issues. She had an adverse reaction to the MMR (live measles) when she was 15 months resulting in a loss of fine/gross motor ability and speech. I didn't want to risk reactivation. We still take milk thistle. I tried isatis, but there was no response to it, good or bad. The same with ashwaganda. We are taking very small doses of alchornea with our 8 drops CSA 2x daily. Still taking houttuynia and cordyceps and rhodiola.
"Also what is your future plan? Keep going forever? A maintenance dose? Or, will you at some time, gradually reduce the dose slowly and if symptoms come back increase the dose? Or is there any plan to wean off the herbs?"
Right now I will continue low doses of the herbs I have listed at the bottom of the post for at least another year and then perhaps decrease dosing to M,W,F and see how that goes. I don't ever want to get back into the original mess we were in. I will continue with the other nutritional supplements/probiotics indefinitely.
"Did you notice any toxicity or side effect symptoms with any of the herbs? - Currently I notice all these herbs feel a little achy sometimes on my kidneys, and I am also thinking about the effects Sida Acuta has on DNA... That is my own DNA. But who knows, to be honest I really don't really understand the mechanism of action of the herbs on the body or the bacteria. I just heard somewhere they could be cytotoxic."
The only side effects I noticed from the herbs was hair loss (for both K and myself) with high doses of sida acuta (we were taking 1/4 tsp 3x daily before I switched to CSA and concurrently discontinued sida) and with higher doses CSA. We were using 15 drops 2x daily during our early herbal treatment phase. Probably, as you suggest, because of the effects on DNA that Buhner mentions in his book. I am not concerned about low doses, as cryptolepis is used on a regular basis in Africa as a malaria prophylactic. Neither of us was able to handle even 1 drop of Bidens frondulosa which caused us significant vertigo.
The only other issues we had were herxing with higher doses of houttuynia and CSA. Decreased dosages solved the problem.
Here is a list of our regular supplements. We treat during the week and take the weekends off of everything.
List of supplements (Mar 2016):
Supplement Manufacturer Dosage
Activated B Complex Swanson Ultra 1x daily
Methyl B12 sublingual NaturalFactors 1000 ug 3x weekly
Phosphatidyl choline AllergyResearchGroup 385 mg 1x daily
Biotin Naka 2500 ug 1x daily
Black walnut Hull Nature’s Way 500 mg 1x daily
Mineral supplement Sisu 1x daily
L-glutamine NaturalFactors 500 mg 3x weekly
N-Acetyl L-cysteine Natural Factors 500 mg 3x weekly
Magnesium citrate powder Natural Factors 300 mg 2x daily
Vitamin C powder Natural Factors 1000 mg 2x daily
CoQ10 Natural Factors 100 mg 1x daily
Selenium (from yeast) Natural Factors 100 ug 3x weekly
Zinc citrate Natural Factor’s 15 mg 3x weekly
K2 Natural Factor’s 100 ug 3x weekly
Garlic (raw clove) 1 clove 4x weekly
Milk Thistle tincture Orange Organic Naturals 250 mg 1x daily
Hawthorn tincture Orange Organic Naturals 250 mg 1x daily
Rhodiola Orange Organic Naturals 500 mg 1x daily
Japanese knotweed powdered herb 1st ChineseHerbs 1/2 tsp infusion 2x daily
Houttuynia powdered herb 1st ChineseHerbs 1/2 tsp infusion 2x daily
CSA tincture (cryptolepis/sida/alchornea) Woodland Essence 8 drops 2x daily
Cordyceps powder 1st ChineseHerbs 1/4 tsp infusion 2x daily
Lions Mane powder 1st ChineseHerbs 1/4 tsp infusion 2x daily
Reishi powder 1st ChineseHerbs 1/4 tsp infusion 2x daily
Red root tincture Woodland Essence 5 drops 2x daily
Cilantro tincture organic FlowerFairyHerbals 5 drops 2x daily
Ginger tincture Orange Organic Naturals 500 mg 2x daily
Turmeric tincture Orange Organic Naturals 500 mg 2x daily
Astragalus Nature’s Way 470 mg 3x weekly
CurcuminX4000 GoodHealthNaturally Meriva extract 600 mg 1x daily
ColdFX Afexa (Panax quinquefolius extract) 200 mg 3x weekly
Align Probiotic 10 billion Bifido longum infantis 35624 Every second day rotation
Culturelle probiotic 10 billion L rhamnosus GG Every second day rotation
Ultimate Flora RenewLife 50 billion multistrain: Every third day rotation
Prescript-Assist GoodHealthNaturally Every third day rotation
Lugol’s 5% J Crow’s 1 drop 1x daily
Diatomaceous Earth Perma Guard ½ tbsp 2x daily
Psyllium husk organic ½ tbsp 1x daily