posted
Joyce, Thank you for responding. I just heard (timely) that Dr. K has a new testing protocol that he detailed at the Lyme Induced Autism conference. So, waiting for the update from some who attended.
I will post to the thread when I get the info if anyone else is wondering out there..
That is good info to know.. I do have some symptoms. I tan, but I handle stress very poorly, have weak arms, more so under stress or various types and so on.
I cant see how this is not a factor.
Posts: 861 | From USA | Registered: Dec 2008
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posted
R62 Scott just posted it a bit ago.I love all the info coming out on Pyrroluria. A BIG piece of the puzzle. Not a fun protocal though,sorry to say. Kicking my booteeeee
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
This is pretty new as far as having to do with chronic illness. Does not seem that many Md's are into it yet. Hopefully soon though. Suppliment levels need to be monitored. Do a search here for more info. Search Pyrroluria, Kryptopyrroluria, KPU Hope this gives you more answers. http://drrandy.org/article.html This is my Md.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
You are very welcome R62. I just want to share that I had one day last week,and yesterday that my symptoms lifted. Now they are back.I don't want to get too excited just staying in the moment and enjoyed it. Not that all symptoms were gone but what I felt was easier to handle. Helping me to be more hopeful after 27 yrs.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
got the word today that i start KPU asap. also starting AI. i will stagger the 2 beginnings.
what does 245 mean in terms of positivity. my ND explained that ho i collected made the result be more positive.
how much time should i give the stagger? also, did anyone get digestive issues, specifically diarrhea?
on that note, i'm going to have lunch. aliyah
Posts: 830 | From Colorado | Registered: Mar 2005
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I have been on it since April. I am doing great!! 100% recovered from illness. I just got certified to teach pilates and as part of the 3 days of testing did 9 hours of working out, in addition to teaching for 2!!
It's tough in the beginning, but well worth it. It could also be the cause of some of your digestive issues.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I have been on the protocol 8 mo now.I have 2-3 days now where symptoms lift and I feel like the real me in mind,body,spirit emotions.Then I get slammed again with pain exhaustion etc.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
Anyone have autonomic issues and try the KPU protocol? I'd say my autonomic issues (heart issues, blood pressure issues, etc.) are what keep me from tolerating treatments. I'm just wondering how this will affect those awful symptoms (I started the protocol today). I'm hoping that they won't worsen and that they'll just get better, because I can handle other symptoms like pain, fatigue, flu-like feelings...but I just can't handle a worsening in the autonomic stuff...
Posts: 710 | From West Coast | Registered: May 2008
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posted
thank you all. 6 an healing, i am so happy for you i cried when i read 9 hrs of pilates. and i just read this thread today, so i got the beginning the kpu protocol and this. fast forward. great.
you will know i am doing better when i have tthe energy to capitalize again.
Posts: 830 | From Colorado | Registered: Mar 2005
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Six, congrats about the pilates!! I am also doing pilates for fun, I do enjoy it. I feel more energetic after doing pilates than before doing it, funny, even if some exercises can be tiring for certain muscles.
I'm on a minor KPU protocol since about March, I think...
I added the supplements slowly. Now I'm on daily one capsule Depyrrol, not anymore suffering a lot like in the beginning (I could tolerate about one Depyrrol every 2 weeks!!?).
My daughter still cannot take hers daily, she's having more reactions to kids-Depyrrol than me. I have been longer on metal detox than her (at least 1.5 year, if not 2 years more), and that could be the reason.
What is changing is that I sleep even better, I think. I certainly get many vivid dreams, but I still can't remember them all.
I feel my vision always get some help from the KPU supplements, but I can't say how. I feel like I can see clearer. Anyone else?
Another thing I notice is on body temperature. It keeps changing, sometimes warmer, sometimes cooler. Before, it was ONLY cool.
my daughter has still bits of joint pains with Depyrrol and recently, got a stiff muscle in the side of the neck (lack of magnesium).
Zinc supplementation can cause that, so she's taking magnesium now.
I notice she gets a bit more tired than usual and she's on liver and lymph support now.
The color of my toes also improve, from darker purple to almost like skin color. They still don't look like they should 100%, but I'm hopeful.
Posts: 6200 | From Brussels | Registered: Oct 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Could someone kindly answer my question referenced above?
To all who did the testing through vitamin diagnostics-
Is it vitally important to follow DK's instructions for the test or did some of you follow the testing included w/ the kit?
Thanks
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Sorry, Derek, I don't know. I was ART tested, not perfect, but all I had available.
Thank you, aliyalex and Brussels. I feel better after Pilates, too, Brussels. Though I have overdone it some during training and had to take a few days off. That is normal though, everyone else in the program had the same problem, at least those who were working out as much as me. And I took off yesterday and today after last weekend!!
I really feel the Pilates works to the deeper muscles making fewer places the borrelia can hide out. It can be done as easy or as hard as one is capable of doing, so a great workout for Lymies, IMO.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I did not use Vitamin diagnostics. My doc used Bio center,and my test came back high positive.It was only one urine sample not 24hr. If peeps come up neg he will do VD. Scott posted new info on his site about zink. Important to know. We r not to post his addy here. PM me if u don't have it.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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