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What made you think KPU?


lismom
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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 possible that my son's main problem is KPU that later led to PANDAS?

 

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

Pure speculation on my part, but I assume they don't test for it because it's not a condition that's on their radar. I don't have the impression that KPU or pyroluria is mainstream. What little research I've been able to find in the likes of PubMed and science libraries treats it as a "pseudo-science" theory. The existence of pyroles doesn't seem to be disputed. But the resulting symptoms as a cause/effect relationship doesn't seem to be well acknowledged. If I'm wrong on this, I'd love some links. I haven't found many. That's why I was so excited yesterday when my pharmacist had heard of pyroles and made the zinc connection with little effort. Made me feel validated.

 

Which came first? I don't know if anyone can answer that. But for my personal situation, it feels more right that KPU came first (due to frequent babyhood illnesses, intermittent behavioral issues, that "something's not right but can't figure out what" feeling I had as a mom. Then I suspect lyme came right before our first "OMG what happened to my kid" experience and Pandas came a few months later with his first strep. I don't even know if I'll feel he has Pandas by the time we're done (will that day ever come?). But I do feel KPU may be with us for life, because I feel it's always been there for us, I just didn't know it had a name.

 

As for your own situation, only you have enough background info to decide which feels right, but try not to tie yourself in knots. It's likely a chicken/egg question that you may only be able to answer when chronic infection is gone from the picture.

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My dd's KPU test came back high normal. I know the test is unreliable. But her normal test result leads me to believe she does not have the genetic disorder but that the condition was spured on by lyme. But this is complete speculation. I've asked the same question to the others about how will I know if I can stop the KPU treatment or not.

 

I was horribly confused about KPU and whether we should do the treatment in the absence of a positive test. However, I was convinced on some level that it was affecting her. Today is day 5 I think with 3 CORE pills. She is showing signs of stres. More whiney and unhappy, demanding and overall ill where yesterday she was not. I am sure it is from the CORE treatment, that she is starting to dump more heavy metals and if I increase her detox and keep at it, I will see another improvement soon.

 

I'm just rambling at this point. But I do understand your confusion. I can't begin to say I really understand it myself at this point. I still wonder if it affects me but I have not tried the treatment yet. I can say that I feel we are on the right path for her.

 

Susan

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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 possible that my son's main problem is KPU that later led to PANDAS?

 

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

As for your own situation, only you have enough background info to decide which feels right, but try not to tie yourself in knots. It's likely a chicken/egg question that you may only be able to answer when chronic infection is gone from the picture.

Thank you, LLM, for reading my rambling. I guess my thoughts (or should I say hopes) are that if the KPU was their first, perhaps fixing the KPU will take care of my son's problems and this will all be over for him. But as I read your post I finally understood--even if you fix the KPU, the lyme (or whatever infections my son has) will still have to be treated. But perhaps fixing the KPU will keeping him well once he is completely over infection. Thank you!

 

 

Susan -- In what way is the test unreliable. Are you talking about the problems with taking urine properly and preserving it properly? I guess I am asking, is the problem with the test giving a false negative (or a lower than should be positive)? There shouldn't be a problem with getting a false positive, right? I am asking lots of questions as I have an appointment with my homeopath tomorrow to discuss treatment for my son's KPU and I want to understand it all as much as I can.

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Susan -- In what way is the test unreliable. Are you talking about the problems with taking urine properly and preserving it properly? I guess I am asking, is the problem with the test giving a false negative (or a lower than should be positive)? There shouldn't be a problem with getting a false positive, right? I am asking lots of questions as I have an appointment with my homeopath tomorrow to discuss treatment for my son's KPU and I want to understand it all as much as I can.

 

Yes, I think you are right, it's a problem with false negative not false positive. I'm not sure we use the best lab and you do have to preserve the urine from light, etc. My LLMD almost did not test because she was sure she had a KPU issue and did not want the negative test to deter her. But she had never treated one for KPU and was cautious.

 

Susan

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Today is day 5 I think with 3 CORE pills. She is showing signs of stres. More whiney and unhappy, demanding and overall ill where yesterday she was not. I am sure it is from the CORE treatment, that she is starting to dump more heavy metals and if I increase her detox and keep at it, I will see another improvement soon.

 

We're on Day 5 on 3 pills too. He ran a low fever Days 3-4. Now I don't like what I'm seeing - big brain fog, irritable, feeling "not right" - not the good stuff we've seen before. So I dropped back to 2 pills again. I'm reading mixed things about chlorella's ability to bind to mercury strongly enough and it's making me feel unprepared for the step of metals dropping. So now I feel between a rock and a hard place. Treating KPU has clearly given us huge gains. So it's not like I can stop giving what his body needs. But now we seem headed into a need for chelation that's more serious than I first thought.

 

I'm going to look into a more deliberate chelation strategy - but for anyone who's been down this road - most chelation strategies involve a chelation agent every 4-8 hrs on weekends. Then a week-2 week break. But if you're giving CORE and this makes the body drop mercury every day, what do you do? You can't give DMSA every 8 hrs every day, I read that you shouldn't give it once a day, yet I can't just give Core on chelation weekends. It needs to be every day for the immune system to have what it needs. I feel stuck. Can't go backward but not sure of the proper way to go forward.

 

(Don't mean to scare you Susan - just wanted to let you know where we're at - your DD may not have the mercury issue my son may have. Since getting ill, cognition issues have been a big part of his battle, so it's possible mercury has been the hurdle behind it. Throwing this out for anyone who may have better chelation perspective.)

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(Don't mean to scare you Susan - just wanted to let you know where we're at - your DD may not have the mercury issue my son may have. Since getting ill, cognition issues have been a big part of his battle, so it's possible mercury has been the hurdle behind it. Throwing this out for anyone who may have better chelation perspective.)

 

We are right at the same point with the 3 pills and I'm not liking what I see either. She does seem to be having trouble thinking. She can't take DMSA at all because she has seizures. Dr. K recommends cilantro as well. Have you tried that? I don't know this is a hard one. I told her to start taking epsom salt baths and sauna's every day. I guess I'll see how she's doing after this weekend. I'll have increased efforts around it and let you know how she is doing.

 

I'm also giving her ALA and NAC which should help with detox but I don't know if it will specifically bind mercury. I don't know what she is dumping which is part of the trouble.

 

Susan

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I don't yet know if my DD has KPU -- something I want to discuss with our Doctor today -- but from what I understand KPU patients have low Glutathione levels. Here is a definition of Glutathione and why it's important to the body:

 

"Glutathione is an essential component of your cells, with low glutathione levels, cells cannot perform many of their functions properly. Although glutathione functions in dozens of roles in our metabolism, the major functions can be summarized in four areas:

 

(1) It is the major antioxidant produced by the body. Antioxidants such as vitamins C or E cannot be made by your body and in fact could not work properly if glutathione were not present.

(2) Our immune systems depend on a steady supply of glutathione. Without it, our immune defenses become weakened.

(3) It is important in detoxifying many substances including heavy metals, breakdown products of cigarettes and automobile exhaust, many cancer-causing agents, and a multitude of pollutants and toxins we encounter on a daily basis.

(4) The major source of energy produced in our cells is derived from tiny structures called mitochondria. These mitochondria would literally burn up without the presence of glutathione." 

 

My DD used to have very low Glutathione levels and after having monthly IVs for two years it cleared up her severe colitis and she no longer had to be on a GFCF/soy-free diet, which she had been on for years. It also really helped before doing chelation to pull mercury, tin, and other heavy metals from her body.

 

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.

 

 

Sorry to go off topic, but why is this test important?  Did it affect your child's treatment?

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I stopped ALA yesterday as well. According the chelation guru Cutler, ALA is very effective at chelating brain mercury. But you shouldn't go there until you've done extensive body chelation. I'm finding so much conflicting info. So I've kind of gone into a holding pattern. Not sure where to go next. Let me know if pushing through works. I hope it does!

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My DD used to have very low Glutathione levels and after having monthly IVs for two years it cleared up her severe colitis and she no longer had to be on a GFCF/soy-free diet, which she had been on for years. It also really helped before doing chelation to pull mercury, tin, and other heavy metals from her body.

 

 

Sorry for the ignorance, but monthly IV's of what? Did your LLM order them?

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Monthly Glutathione IVs. My DAN doctor does them in his office. A push IV took 10 minutes and a drip IV took 20 minutes.

 

My DD used to have very low Glutathione levels and after having monthly IVs for two years it cleared up her severe colitis and she no longer had to be on a GFCF/soy-free diet, which she had been on for years. It also really helped before doing chelation to pull mercury, tin, and other heavy metals from her body.

 

 

Sorry for the ignorance, but monthly IV's of what? Did your LLM order them?

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You might want to pm LLM for the name of her LLMD. He would be a better doctor in treating KPU and is still in the CT area. I don't feel the doctor you mentioned would be helpful if you are looking for a more intergrative approach. Both are excellent doctors though.

 

edit- ok...just noticed LLM is posting.

Edited by philamom
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