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What made you think KPU?


lismom

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I have read the symptom list. We don't fit the obvious. I may have asked already, I'm sorry. Just covering bases here. Was it lack of improvement? and if so how long did you think was appropriate time. Was it linguring things after an extended amount of treatment time. Was it a long plateau period? We are only 6 months into treatment for a 5 year illness, so... Thanks, Kathy

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For us, it was two things -

First, DS, who had been chronically sick for 3 yrs, had a great initial response to lyme/bartonella treatment, but then plateaued and even started to backslide after 3-4 months. This was the same pattern with Pandas - initial improvement followed by stalling or backsliding. So we got aggressive with lyme - adding tindamax, switching abx - and had a horrible and prolonged herx. It sent us to look at the basics (something maybe we should have donw when we first started with the LLMD but that's water under the bridge). We looked at HLA gene, mold markers (Shoemaker's list), KPU and metals - the things that tend to get in the way of successful lyme treatment. The ones that stood out were KPU and metals - and that made sense to me, because (the is the second thing) in the past, DS had a very weird reaction to zicam (zinc). DS had some symptoms on the KPU list, but not the biggies. It was more that we needed to look at what the log jams could be.

 

Now that we're treating the KPU, we're seeing the expected responses. He's "waking up" - is overall a different kid. But is also spiking a fever for a day or two, with lymph swelling, in close approximation to when we increase the CORE supplement. So he's following "the script" in terms of how his body's expected to respond - and this is the kid who up until now, hasn't always done that. So it feels right.

 

Because it could be genetic, and I had zinc/illness issues as a kid, we also tested my DD, who had many more of the symptoms on the KPU list but came back only borderline for KPU. So we just started giving her CORE and we'll see what happens.

 

I am starting to look at metals, which scares the heck out of me.

 

I stopped by the local pharmacy today and because I hadn't been there in a few months (we switched to Costco for the kids scripts because they're much cheaper and worth the 1/2 hr drive) the pharmacist asked how DS was doing. I told him about KPU and tho he hadn't heard it called KPU, he knew exactly what I was taking about when I mentioned pyroles as a byproduct of heme synthesis and how they bind to zinc. He said "Oh, so it's unavailable- makes total sense." Funny how a small comment made me feel so less crazy.

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My son has none of the symptoms of KPU except for mild hypoglycemia and cold hands yet he tested in the "extreme" range. But he is also asymptomatic for strep and/or lyme. My son's symptoms for everything seem to be OCD. It seems to be his body's way of telling him he is sick. It's an inexpensive test, worth having done, especially as 80% of lyme patients will test positive for it.

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Pale skin, dark circles under eyes and chapped lips that would come and go. It made a difference in those symptoms within 48 hours of starting. I still notice those symptoms a little bit when he has a herx response but overall he looks so much healthier. Mood liability or mood switching has improved tremendously. Like Laura we have experienced three fevers with flu like symptoms or colds since starting and he is responding normally to those illnesses. We've been treating since mid June.

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Yes, forgot about the chapped lips - that was one that stuck out, along with the dark circles/sick palor (reminded me of those threads on the Pandas forum a few years back about the 'Pandas circles" some kids had around their eyes when they were in episode). These, plus the Zicam-induced chorieform piano playing fingers, made KPU resonate with me.

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Prior to learning about KPU, she was not responding to lyme treatment. She really had very little improvement or change (good or bad) in over 6 months. I saved this list of KPU symptoms that my dd8 fits (below). She also fit the profile with low glutathione levels and other mitocondrial issues (I'm pretty sure I'm remembering correctly that this appears in KPU).

 

For me, it was an Ah Ha moment when I read about it. I felt certain it fit her profile and explained a lot of what I have been seeing. Since starting Core, she has started responding with some difficult stuff like rashes, skin eruptions, anger, stress but best of all, she is now remembering her dreams and she is doing much better in school. She seems to be growing and just looks better overall.

 

dd8's symptoms at times:

Light / sound intolerance

Pale skin

Environmental and food allergies

Poor breakfast appetite

Emotional liability

Explosive anger

Attention deficit / ADHD

Poor dream recall

Anorexia

Thin fine hair

Anal itch

Stress intolerant

Difficulty sleeping

Edited by Suzan
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I'm sure the body can resolve detox issues without needing CORE and KPU treatment. I don't think you should scare yourself into thinking that you need to test for everything that gets mentioned on forums. My personal take on Klinghardt's comment that 80% of lyme patients show signs of KPU, I interpret it to mean he's talking about the sickest of the sick, which are the patients he sees. Chronic lyme patients who by the time they see him, probably have other things going on as well. I personally don't think that 80% of the entire population dealing with lyme has KPU. Just MO.

 

If you're seeing improvements, then maybe just get your LLMDs thoughts on this. On the other hand, it's a $70 test, so if it would put your mind at ease to check, then probably not a bad investment.

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I'm sure the body can resolve detox issues without needing CORE and KPU treatment. I don't think you should scare yourself into thinking that you need to test for everything that gets mentioned on forums. My personal take on Klinghardt's comment that 80% of lyme patients show signs of KPU, I interpret it to mean he's talking about the sickest of the sick, which are the patients he sees. Chronic lyme patients who by the time they see him, probably have other things going on as well. I personally don't think that 80% of the entire population dealing with lyme has KPU. Just MO.

 

If you're seeing improvements, then maybe just get your LLMDs thoughts on this. On the other hand, it's a $70 test, so if it would put your mind at ease to check, then probably not a bad investment.

 

I agree. Although in the pediatric population OCD and ADHD seem to be the symptoms seen when everything else is asymptomatic. KPY/HPU can exist without Lyme as a genetic error of metabolism which is so subtle its often missed. A lot of children with any kind of neurological immaturity from ADD, ASD, ADHD, PDD, SPD etc can have underlying KPU issues which are making matters worse.

We haven't addressed KPU yet as far as using the Core specifically for that. There are several other supplements which can be used, Citramins is one of them. Core is not the only one. Also diet plays an important role as always.

Not sure if KPU has any specific physical symptoms. Haven't seen or heard of that so far. I will certainly keep an eye out for chapped lips etc mentioned here.

 

As has been posted before KPU protocol is comprehensive and one needs to address the whole issue of metals being displaced when minerals are supplemented and that comes with its own set of problems that have to handled carefully so as to not worsen the situation. Bottomline do it with a knowledgeable healthcare practitioner.

 

I also aree with Laura to not go in for all thats being mentioned on the forums as a flavor of the moment but to rather weigh your own situation to see if you really need to go thru that at this time. Everything is emotionally draining, expensive, has herxing and needs monitoring.

 

Knowledge os important so we know all the things we need to keep in mind as a bigger pictute. Not everybody needs KPU addressed just because you have Lyme and Co.The same goes for biofilm, gut dysbiosis etc. Those will have to be kept in mind by your practitioner and make decisions accordingly. There is no need to add it on all at once.Not everybody has biofilm, gut dysbiosis etc. My ART testing for each patient so far hasn't come up with one single case being similar to another, not even twins! Many very young children I see don't have gut dysbiosis yet and we keep it that way thru dietary support not supplements as an example.IMHE.

Edited by sptcmom
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What test do you run to check for low glutathione levels?

 

I will need go to through her files to see if I can find it. I don't know if it was a glutathione test directly or the fact that other things were high (or low) and implied a glutathione issue. At the time (this was in 2008) we were working a lot with Great Plains and the OAT test and stool testing, so maybe it was from that. I will try to remember to look through the notes.

 

Susan

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It's a simple blood test to check glutathione levels. But very important! Does not have to go to a specialty lab.

 

What test do you run to check for low glutathione levels?

 

I will need go to through her files to see if I can find it. I don't know if it was a glutathione test directly or the fact that other things were high (or low) and implied a glutathione issue. At the time (this was in 2008) we were working a lot with Great Plains and the OAT test and stool testing, so maybe it was from that. I will try to remember to look through the notes.

 

Susan

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KPY/HPU can exist without Lyme as a genetic error of metabolism which is so subtle its often missed. A lot of children with any kind of neurological immaturity from ADD, ASD, ADHD, PDD, SPD etc can have underlying KPU issues which are making matters worse.

 

This is what is confusing to me. If KPU can exist as a genetic error of metabolism without being caused by an infection like lyme (or strep or whatever), then why don't PANDAS doctors test for this as standard? Is the reason because it is unlikely that PANDAS is set into motion by this genetic error? Is it unlikely that a child would have KPU that would then cause then to be more likely to react with PANDAS symptoms to a strep infection? In other words, KPU first, PANDAS second? Or do they shy away from the test because it has to be done through a specialty lab?

 

The reason why I as asking is because I have read of pure KPU stories (no PANDAS) where the symptoms are basically "sudden-onset OCD." I read stories of children who have the genetic form of KPU but never know it until a stressful event triggers severe OCD often in the teen years. For example, they have to move to a new school. They are then tested and treated for KYU and they fully recover. But don't the symptoms sound like the adolescent variant of PANDAS (which my son has)?

 

Is it possible that my son's main problem is KPU that later led to PANDAS? He did undergo a stressful move at 13 which started noticeable OCD symptoms, but he was not incapactiated until 15. I have no idea if he had strep at 13 (he is asymptomatic), but his strep titers were high at 15 when he went into full exacerbation. He has not responded well to antibiotics.

 

Or is it more likely that KPU is simply "making matters worse" and the root problem is PANDAS/LYME?

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Glutathione (GSH) test. Many labs, including Great Plains, do this test. Does not have to go to a specialty lab. I believe most hospitals do glutathione testing.

 

It's a simple blood test to check glutathione levels. But very important! Does not have to go to a specialty lab.

 

 

What is the test and which lab?

Edited by NancyD
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