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What is your child's KPU treatment?

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My DS17 is on the following as treatment for KPU/HPU:


1. CORE by Biopure -- 4/day with dinner

2. Borage Oil -- 1,000 mg. -- Pure Encapsulations -- 2/day


This article describes Dr. Klinghardt's protocol for KPU/HPU:




Of the "required" things in the protocol, all seem to be in the CORE and borage oil that my son is already on except for the magnesium. The CORE has only 10 mg. of magnesium in it.


Of the "optional" things in the protocol, it seems that perhaps my son should be on Niacinamide since his symptoms are mainly severe OCD. He is on a basic B complex (Thorne Lab; 2/day), but it only contains 130 mg of niancinamide/tablet--no where near the "1000 mg three times per day for psychiatric symptoms

" that the article suggests.


I was also wondering if my son should be on the "High Gamma Vitamin E" that the article suggests. He is not taking any vitamin E except for the 2 i.u in the borage oil.


I was wondering what others are giving their children for KPU/HPU treatment. By ART testing, my son's KPU is doing well, so perhaps I am wasting my time thinking about this. But I would appreciate anyone's opinion as I feel KPU is/was a big issue for my son.



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My son also takes


2 Core with breakfast

2 Core with dinner (B6 is water soluble and doesn't hang around long. So we dose twice a day to even out the dose)

1300mg evening primrose at dinner


200 mg magnesium at bedtime (b/c we give abx at breakfast and dinner and magnesium interferes w/abx absorption, so we separate it by a few hrs). (My DS is 10, so doesn't need an adult dose of magnesium yet).


He takes other things for lyme but this is his KPU treatment.


As for niacin, be cautious. If you have an MTHFR mutation, you should not take extra niacin, especially not such a huge dose. Niacin uses up methyl groups, something those with MTHFR mutations are generally short on to begin with. So with an MTHFR mutation, niacin can reduce seratonin. Here's an interesting case study that talks about the need for balance and why niacin can be good for anxiety in some and bad for others. http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/ It's about balance. So if you were inclined to try niacin, start with a very small amount - like 50mg. Certainly not 3000 mg.


If your DS is in a good spot, I'd leave it alone. Can't tell you how many times I've "tweaked" only to then spend months getting back to where we were.

Edited by LLM
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When we treated for KPU....Geez, over a year ago our older DS took 4 Core pills a day and I can not remember how we broke them out. At the time, we were giving the higher Omega 3 ratio's (Oops) but are now using the 'YES' parent essential oils that favors Omega 6's that includes primrose, sunflower, flax, pumpkin, coconut (lots of E in Sunflower Oil). We did not supplement with magnesium, vitamin E, Niacinamide at the time.


One of our Dr.'s believes KPU is predominately driven by infection so when our older son stopped ART'ing for KPU we suspended treatment after about 6 months. I need to say, it is always hard to give up something that seemed to help so much inclusive of a specific antibiotic or combo of antibiotics. I worry KPU is still an issue and have a test kit sitting under my desk and think we will retest older DS again when off antibiotics to see if there is a lingering issue to give me peace of mind. We also started younger DS on KPU treatment with one Core pill a day at the same time as older DS, he initially got worse and within a month he developed a nasty fungal infection (black tongue). Our other LLMD requested that we stop KPU treatment due to "potential" inflammatory response and heavy metal dumping causing fungal infection. We have not gone back and retreated this particular child for KPU and he has continued to make progress. He originally ART'd for KPU and was borderline on urine results.


As for ongoing supplementation in light of KPU results..... I now look for the balance of vitamins through Health Force products with a rotation of Vitamineral Green (lots of E and K), Truly Natural C, Earth and only supplement with B-12 (lower dose than the past 2 years), Kavinace (B-6 and Taurine), MSM, chlorophyll, probiotics. The focus has turned toward oxidative stress so hopefully any vitamin is better absorbed and the body no longer needs the crutch of higher dose supplementation. We have had similarly positive results addressing oxidative stress as we did when treating KPU for older DS. I personally am seeing much better results addressing oxidative stress but I was also sicker a year ago when treating KPU... so, who knows.


KPU treatment definitely helped advance treatment but like Susan Swedo said the tincture of time has been critical in the over all healing process. It all mattered for us but many kids will get well and not have done any of the things we tried and used many other forms of treatment. I wish it had been simpler for our family and I too rack my brain over some of this stuff "obviously".


Anyway, I just wanted to give you the confidence that your son's march towards recovery is happening and wanted to congratulate you on those successes. We didn't do every thing right or recommended for KPU and it still helped. I don't think it can hurt to add some of the things your son is missing from recommended protocol to see if it helps. Of course add supplements one at a time, build dosage and watch for positive, negative or herx 'like' response. I remember reading something about the 'balancing act' of treatment a long time ago and geez that concept still resonates strongly.

Edited by SF Mom
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LLM -- Thank you so much. My son has one copy of the MTHFR C677T mutation and is under-methylated (takes a B12 shot every 3 days for methylation). I will not add the niacin. I think I will add a little magnesium at night though. He does have trouble getting to sleep sometimes. I would rather add magnesium than to add melatonin.


I will split the CORE up between breakfast and dinner too. Good idea!

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SF Mom -- I'm not sure why, but ART doctor feels my son's KPU has been there since birth. He feels my son will be under KPU treatment for life though it is now testing as being under control. So I guess that means the doctor feels my son would regress if taken off the CORE. It's fine with me to leave him on it. Don't want to rock the boat.


Yes, my son is slowly improving. I will forever be grateful for all your help.

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FWIW - my son will probably be on Core or something similar for life as well. I have it too, without any chronic illness.


Also, splitting the dose and giving 2 core later in the day may help with sleep. B6 is a co-factor with tryptophan to make melatonin. So you may even want to play with dosing one at dinner, one at bedtime or maybe both at bedtime instead of dinner.


Keep in mind that magnesium is used for constipation (it's what's in milk of magnesia). So if you add magnesium and stools get too loose, back down on dose. I actually use stool consistency and frequency as a dosing guide (sorry if TMI).

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OK so now I am pulling out the test kit from under my desk and actively looking for a week to suspend supplements so we can retest. Better safe than sorry. Off hand does anyone know about herbals or homeopathy and if its o.k. while testing or is it just vitamins? I think we suspended CORE last November so the results will be interesting to see if KPU is still a problem. Does anyone remember also how long it takes to get results 2, 3 weeks? I'd also like to have the results back in time for next LLMD appointment.



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It's been awhile, but I *think* you only need to be off vitamins and minerals. I think herbals/homeopathic would be ok. After all, you get vitamins and minerals in your food. It's not like you're not supposed to consume any, just not supplement for 5-7 days prior to the test. We stopped everything except abx and probiotics and that week, my son stopped complaining about all the pills. He felt so bad by the end of the week that he was begging - literally begging - to restart all the pills because they helped him so much. So it was a good lesson for both of us.


Ironically, when we stopped all supps for my daughter last month to run an amino acid urine, we found out that she was the opposite - she felt better when she stopped the pills. So we've only added the minimum of stuff back. (she was only borderline KPU last summer while my son was very positive and it's probably a lifelong condition for him). So it's a good opportunity to take stock of everything and decide what needs to restart and what you might be able to stop.


I recall it taking 3 weeks to get the results.

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One of our Dr.'s believes KPU is predominately driven by infection so when our older son stopped ART'ing for KPU we suspended treatment after about 6 months.



The focus has turned toward oxidative stress so hopefully any vitamin is better absorbed and the body no longer needs the crutch of higher dose supplementation. We have had similarly positive results addressing oxidative stress as we did when treating KPU for older DS. I personally am seeing much better results addressing oxidative stress but I was also sicker a year ago when treating KPU... so, who knows.





SFom -- which son are you testing -- the one who was borderline or the one who developed a fungal infection? do you have anything to elaborate your thoughts about KPU being driven by infection or being life-long?



i'm doing a balancing act between practioners -- our integrative MD believes infection is root of all (not totally but easier to say it that way). a year ago when KPU hit the scene here, i discussed it with him. he did energy test ds for zinc and he appeared low, normal in copper. ds has typical copper personality. we did homeopathic cuprum and also zinc with not much results. ds looks pretty good as far as infections.


recently, i added another practioner who works more biochemically. ds blood tests low normal for zinc, normal for copper -- but inappropriate zinc/copper balance. his urine KPU is 5.74, which was surprising for everyone.


so, i do wonder if this imbalance is an effect of infection or a life-long biochemistry. i guess the only way to know is treat, then back off and see results -- ?? -- of course, not sure i can screw with good results - but also don't want to do excess treatments -- even of vitamins.


to the original question -- both my kids use homeopathy -- ds8 more severe symptoms but now on less homeopathy b/c doing well. they were also both taking 15 mg zinc for a short time before KPU testing. we stopped the zinc and the homeopathy - but only for a few days - whatever the lab recommended, that i think was only 2-3 days. as i mentioned, ds8 was 5.74; ds 10 was a little higher but normal. IDK -- could it have been due to homeopathyand they would have had higher levels if off longer ?? both seem to have positive results from zinc supplemenation.


what is it that you are using to ART test for KPU -- zinc and b6?

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Our LLMD actually tests for Core via ART. One Dr. believes it is infection driven and not sure the other Dr.'s 'full' position on KPU. You have to remember my older son and younger son are not genetically related to me and fully to each other but carried by me in-utero and both have congenital Lyme. Older son was positive and had great response, younger son was positive via ART and borderline on urine and had a tough time with treatment. Our local LLMD did not want to treat the younger son 'at this time' due to possible inflammatory response and again potential heavy metal issues. Said we may eventually parse minerals differently than what is in Core... selectively pick and choose them.


I have the test kit for older DS who was treated for about 6 months and stopped last November. Local LLMD wanted to retest but I've neglected to do that for the last 8 months due to having so much on our plate with treatment. When we were preparing to take him down on antibiotics last February and we found he still had a biofilm problem, high viral issue... Coxsackies being the worst and was positive for all three strains tested. Those results were enough to make me realize that although he looked good he wasn't done with treatment. In the spring he started having mood liability that was slowly getting worse over time (never a huge symptom in the past) but we were focused on treating Babesia and biofilms and thought all the stuff coming out of biofilms was the problem. We stopped treating Babesia as local Dr. felt Bartonella was resurfacing 'taking predominance' or stirred up with more aggressive biofilm treatment. He was right.... we added bactrim to antibiotic combo and he was better within hours, 'perfect' for a couple of days and then he had severe reaction to bactrim with full body rash and had to stop. After that we focused on oxidative stress with natural sulphur and added rifampin and he is almost perfect again but had his first bartonella rashes appear over the last couple of months several times. Sometimes it is hard to parse what is what when symptoms surface. Having the rashes appear after all this time was shocking... and honestly, a little frustrating.


This particular experience has overwhelmingly convinced me that you need to be very thorough to ensure the best possible outcome with potential relapse. Hence, LLM and Christianmom's comments make me go hmmmmm I need to retest older DS for KPU who had a good response with treatment. Younger DS is our sickest and has a long way to go with treatment and still in the PANS mode with treatment and infections. I think we'll eventually get to selective supplementing for him as well.


Thanks LLM on perspective on testing. We start homeopathy for bartonella in two weeks and will take 6 weeks to complete and didn't want that to be an issue with retesting.

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