posted
How often do people test negative for KPU but end up responding violently to the treatment? My doc got my test back and was surprised I was negative. I have other indicators that made him think i'd be positive, such as low alkaline phosphatase, high MCV MHC, and low taurine, plus those white spots on my nails.
I wondered how reliable the test is, I had it done at vitamin diagnostics and followed Dr. K's older instructions.
Posts: 499 | From Indiana | Registered: Oct 2007
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I was just listening to the lecture on DVD of the recent Klinghardt seminar where he discussed the lab and their testing. If you have done it early, the testing was not done right. He contacted them and now the test results seem to be more dependable.
We do it with energetic testing and older tests, all pointing toward KPU. I would not brush it aside just because the tests say so. I have had more inconclusive and false tests during my Lyme years; if we had acted based on that, we would probably be very miserable. The opposite is the case.
I have posted on the other KPU thread - there is no violent reaction in our case. None whatsoever.
Don't give up.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I tested negative though it was before Dr. K had a series of things that he requests in terms of how to do the testing. Also, you should make sure you got both KPU and HPL testing as the KPU has more false negatives than HPL as I understand it.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There are various ways you can approach treatment if one method is too harsh. Herbs such as schisandra and bupleurum are excellent.
A negative test is just a measure of the level of porphyrins at that one point in time. It cannot rule out KPU.
If the treatment is so harsh, and if you don't have problems with the Cytochrome P-450 liver detox pathway, you may not need to do the KPU treatment but simply other good liver support. However, a negative test does not rule it out.
And KPU is just one of many kinds of porphyria. It might be good to be tested for the full range. That requires blood, stool and urine collections. Urine alone cannot test for some other types. Nor blood alone. All three are required to assess the full picture. But that still is just one point in time and can miss.
There are some genetic tests but the reliability is still questionable. And, in cases of secondary porphyria (as with lyme), the genetic tests likely would not be appropriate.
And, unless going through a porphyria attack, any of those can test negative. When the body is challenged and going through an attack, the tests would be positive.
Adhering to a porphyria diet and basic rules is good for everyone if they suspect this. Precautions by taking or drinking beta carotene can be the best help for me.
Going low on red meats, eating organic foods, frequent small meals with enough healthy food that includes good complex carbohydrates- and total avoidance of alcohol are key.
Being sure to get enough bulk for daily bowel movements (or more) is extremely important. Magnesium can help alleviate the constipation that often comes with a porphyria attack.
Keeping the gallbladder moving and happy is also helpful to avoid porphyrin buildup. Rhubarb can help with both colon and gallbladder when needed.
Mentioned above but worth repeating, herbs such as schisandra and bupleurum are two of best ones I have found.
Avoiding drugs that stress the cytochrome P-450 pathway, too, can help.
More here - be sure to read from the American and Canadian organizations about testing:
posted
So Scott about the HPL part... do you have anything from Dr. K mentioning that doctors should order it so I could show my doctor? I don't think mine is even aware that vitamin diagnostics can do that.
Posts: 499 | From Indiana | Registered: Oct 2007
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posted
I have heard of many people having neg tests do to to VD messing up. My doc used Bio center lab and mine was high positive and they just tested KPU. If my doc has negatives on Bio lab he is then testing with VD as it seems they now r doing it right.Medicare pays for test at Bio There is still too much confusion about all this the KPU protocol that needs to be cleared from the top down.Blessings to that.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
All the details on the testing is in the article on KPU that came out recently in Explore!
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Yeah i have to wonder if VD messed up because I sent them the KPU test and the methylation pathways test in the same package and they said they let the methylation test sit to long and the sample was ruined and now need another one. I asked them about the KPU test and they just said "oh yeah we were able to run that one".... i'm thinking..yeah i noticed you guys ran it but did you run it soon enough. I swear trying to get things taken care of with an illness like this is like constantly making trips to the DMV...
Posts: 499 | From Indiana | Registered: Oct 2007
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