have this newly recognized condition and have difficulty detoxing because of this?
This was new information given to those attending his recent detox seminar.
Remedy is said to be mega doses of maganese and zinc?
I will get the test next week. Lab he uses is in Keyport NJ.
Anyone have info on this?
lymeparfait
[ 03-12-2009, 07:45 AM: Message edited by: lymeparfait ]
Posted by hoot (Member # 19281) on :
Pfeiffer Treatment Center has talked about KP for years..definately not a newly recognized
condidtion. Many children with autism have this issue as well. Supplementation is high doses of
zinc and B6 (in the activated form, P5P).
Jennifer
Posted by seekhelp (Member # 15067) on :
We need GiGi!!
Posted by Jill E. (Member # 9121) on :
A couple of years ago, I had called the Pfeiffer Center in Chicago asking if I could take that test if blood were drawn locally and sent to them, because I knew I had some kind of detox problem and had read some papers by Klinghardt about it.
Pfeiffer said no unless I was a patient of theirs. I couldn't find anyone who would run the test for me although I did find a lab somewhere on the Internet when I was searching back then.
Please keep us posted on what your results are - I have been interested in this for quite some time.
Jill
Posted by Lauralyme (Member # 15021) on :
I did it and my results were within range at 8. I believe 15 and higher indicates KPU. Guess I am within the 20% range.
However I still am taking zinc and manganese.
Posted by SForsgren (Member # 7686) on :
You have to be off all zinc and B vitamins for 5-7 days before doing the test. Also, ideal to be under some stress during the week before the test. Then you do the test. It doesn't catch all cases as I understand. The best test is one in Belgium but difficult for us to do. So I did the test here and it did not show it as a significant issue but I nonetheless am likely to start the KPU protocol. It is a bit more than zinc and manganese but they are a major part of it.
Posted by lymeparfait (Member # 14268) on :
Thanks everyone... Glad to know others who understand this a bit.
Scott, as you have also reported that you are currently doing the AI drops, do you think that work at that level could balance out any problems related to KPU? That I do not also need this test at this time?
Will you start the KPU protocol after fnishing the AI drops? Or do them together.
Just wondering if I should actually take this test right before I begin the drops that are being shipped tome today!
My ND does not fully understand the drops, and neither do I! I am see ingher today and will get ART to help direct me, but could use some guidance.
Lymeparfait
Posted by Stacyb (Member # 13084) on :
Scott,
Where did you get the test run at? and what is the cost?
Stacy
Posted by SForsgren (Member # 7686) on :
There is no data on KPU and AI drops to my knowledge. I don't know if they would impact that issue.
I think the drops are pretty powerful and probably would ease into one or the other before doing both together.
As I understand after about 2 weeks on the KPU protocol, most people will feel much worse as it liberates mercury from various receptor sites where zinc should have been.
Several people feel a bit worse on the AI drops as well as it does its work.
The KPU test I did at vitamin Diagnostics and it was about 55 dollars I think.
Posted by diana (Member # 7466) on :
My kpu test was double the normal high end reference range. This appears to be the missing link for me. The zinc is incredibly hard for me to tolerate in high doses. I am having to start off slow. To say that I have problems detoxing..would be an understatement!
Diana
Posted by Jill E. (Member # 9121) on :
Scott,
If the KPU protocol releases mercury, are you on any chelators at the same time, and if so, which binders or chelators are recommended? My worst nightmare is releasing metals because I can't detox and they recirculate, making me much sicker - this has happened before.
Thanks for the info about Vitamin Diagnostics. That's the lab that did my methylation.
Jill
Posted by SForsgren (Member # 7686) on :
Not chelators so much but binders. Yes, in some cases, you have to pull out almost every detox agent available as I understand.
Detox IVs (EDTA, DMPS, DMSA), foot baths, chlorella, clays, zeolites, EDTA or DMSA suppositories etc.
Posted by Healing in Santa Cruz (Member # 7798) on :
My Md just got back from a class with Dr K. And he wants me also to do this test. Going without supps for 5 day and then treatment sounds intense. I will be shocked if I don't have this problem.I have so many of the symptoms. Hope it will be a big piece of my puzzle.
Posted by lymeparfait (Member # 14268) on :
HOw are you dong now with treatment? lP
Posted by SForsgren (Member # 7686) on :
It's rough. Headaches, foggy, toxic, etc. Need every imaginable metal removal option working with my doctors. EDTA, zeolites, fibers, chlorella, homeopathics, etc. Not a do-it-alone protocol in my opinion. Metal redistribution is a serious problem and one not easily fixed if it happens.
Posted by R62 (Member # 18531) on :
No PKU protocol with amalgams in?
Posted by lymeparfait (Member # 14268) on :
Scott, My ND does not have me on anything for metal removal!
This concerns me as she states she is using Dr. K's protocol.
I have put myself on betonite clay and psyllium, but need to know what Dr. K suggests, so I can go back to her and ask her to verify with him!
It does scare me doing this with someone who is also new at this. She did ART test me for the protocol, but there were no binders included!
NOt a good feeling for me.
Please PM me any thoughts, or send the protocol.
I will not do it on my own, but want her to see what others are suggesting!
LP
Posted by SForsgren (Member # 7686) on :
If she has you on the KPU protocol without being ready to address metals, it sounds as though she is not fully ready for the likely next phases of the treatment.
There is no protocol. Everyone is different.
I listed many of the agents above. Then after you get through this metal/toxin phase, it is reported that people get fevers, etc. as their immune system activates. I am at week 4 now. Definitely feel worse than before I started but have not reached the immune activation phase that I can tell at least...
Posted by SForsgren (Member # 7686) on :
- As KPU is just one kind of porphyria - and it may be enough to investigate that - it also may be good to read about all the types at some of the links here and note that a urine test cannot distinguish all kinds of porphryia:
[ 12-14-2009, 03:31 PM: Message edited by: Keebler ]
Posted by Healing in Santa Cruz (Member # 7798) on :
Thanks Scott for posting my Md's website. I thought there was a rule here about that so thats why I had peeps pm me for his addy. Thanks again Joyce
Posted by SForsgren (Member # 7686) on :
No rule that I am aware of. He's got a public site. No $$ involved. So not a problem.
He's a good practitioner and I'm glad to see that he is willing to share his information as he does.
Posted by lymeparfait (Member # 14268) on :
Great info. Thanks! LP
Posted by diana (Member # 7466) on :
I have been doing the KPU protocol for a couple of months. I tested highly positive. Over double the normal reference range.
Scott is right, this is not an easy protocol. I ran into problems when I started at 200mg/zinc per day for 4 days back in January. The symptoms were way too much to tolerate and it took me months to recover.
I still can't tolerate even 50mg of zinc per day in supplement form. I experience severe cranial spasms. I am fortunate that I have easy access to fresh seafood and I am up to about 100mg a day of zinc through eating oysters (one oyster i between 8-15mg of zinc). This seems to be the only way I can tolerate the zinc. I need to work up to 200mg a day.
I also take p-5-p, manganese and primrose oil which do not appear to be a problem for me.
I am having even more structural challenges that uual since starting the protocol which I believe are due to the zinc affecting my adrenals which in turn affect my ligaments.
I have seen some positive changes already. I am off sleeping pills and my menstrual cycle has gone from 50+ days back down to 32 days for the last two months.
I experienced a period of remission for about a year from my ALL of my symptoms back in 2003. I had attributed this to other things I had done but looking back now, I was supplementing with zinc. It all makes sense now.
Diana
Posted by Healing in Santa Cruz (Member # 7798) on :
Scott, Yes my Md is a sweetie. He is so caring and shares everything he knows.He works a lot like Dr K and adds his own flavor. I am so grateful to have him in my life. I am grateful to you,also for sharing so much good info over the yrs. Thanks Joyce
Posted by Healing in Santa Cruz (Member # 7798) on :
My Md is having me ramp up slowly on this protocal,not just jumping into high doses. Adding supps a week a part. Small doses and then increasing. All energy tested. Even this is hard. I don't think I could handle the high doses right away.
Posted by sixgoofykids (Member # 11141) on :
How does the zinc affect the adrenals?
Posted by R62 (Member # 18531) on :
IF the metals "protocol" involves EDTA (and does it need to involve the big guns?) then it seems one cannot address PKU without having amalgams out?
Posted by m0joey (Member # 13494) on :
r62--I wasn't aware the protocol involves EDTA. Can you link to that?
Posted by R62 (Member # 18531) on :
Scott mentions EDTA above.
Posted by lymeparfait (Member # 14268) on :
Has this protocol made anyone extremely tired or gave them very sore lungs?
Can your body start to do extreme detox afater you begin this protocol, or does it take long? LP
Posted by SForsgren (Member # 7686) on :
EDTA is not part of the KPU protocol. However, as stated several times, the KPU protocol frees up heavy metals in the body. EDTA is a commonly used treatment for heavy metals. So it is treating the cascade of events that happens as a result of the KPU protocol - but is not itself a part of it.
Posted by R62 (Member # 18531) on :
So it could require more heavy duty binders.. ??
What would be worse? Untreated KPU or treating it with amalgams in?
Thanks...
Posted by SForsgren (Member # 7686) on :
Good question. Don't know. Dr. K generally won't even see patients that still have amalgams so for most, this is a very first step of treatment.
Posted by R62 (Member # 18531) on :
DIfficult to do when my doctors and biological dentist have nixed the amalgam removal because of detox issues... I'm guessing address basic genetics & function (metylation, glutathione), dysregulation, detox pathways (including parasite as per hulda clark, then amalgams, then PKU.. ?? Probably a see as you go deal.
Posted by lymeparfait (Member # 14268) on :
Would it be wise to do the Hulda clark while doing the KPU therapy?
I am having intestinal blockage from somewhere, constipation and lighter colored stools that do not move regularly. And edema. I hear this may be a sign of a liver detox problem?
Don't know if this is because of the KPU therapy as I was more regular directly before beginning, but it has been like this off and on for most of my life. Not a new thing for me, just happening very badly since starting KPU.
I am using progurt as well, and it has not helped this issue.
any thoughts?
LP
Posted by sixgoofykids (Member # 11141) on :
I've been a little constipated, too, but attribute that to binders. I'm going to try fewer binders and more magnesium for a few days and see. I've been doing regular coffee enemas since I started KPU because they help me so much with detox. I've gained three pounds .... must be edema/constipation as my weight is pretty consistent normally.
R62, it seems to me, and this is just my thought, that you could do KPU with amalgams. It's not chelation ..... it moves metals in your tissues ... so I'm thinking, it shouldn't be a chelator that pulls mercury out of your fillings. Again, just what I'm thinking.
Lymeparfait, it is making me tired .... I took a nap yesterday, which I never do. I am also getting more tired at night when it's bedtime (which is a good thing). Last night, after a week and a half of KPU, I remembered several dreams. Posted by lymeparfait (Member # 14268) on :
six- I too have been extremely tired, at odd times in the day.
Also, I have remembered dreams for the first time in many years.
I cannot fit into my jeans...this is getting bad!
I feel puffy!
lp
Posted by sixgoofykids (Member # 11141) on :
Haha, I already had trouble with a couple pairs of jeans, so I have to go buy new ones. I had lost 15 pounds with Lyme, after a year or two, gave away all my 'big' clothes, then finally as I've gotten better, gained the weight back (which is a good thing, I'm thin even with the 15 pounds, but I certainly don't want more).
R62, just another thought, if having this condition can give you detox trouble, which from what I've read, it can, then perhaps correcting this will help with detox.
Posted by m0joey (Member # 13494) on :
It seems like there is never a bad time to do Hulda Clark, as long as your body can handle it.
I plan on doing liver flushes followed by coffee enemas every 2 weeks once I start ozone. A liver flush seems like the best thing we can possibly do to keep the gunk movin along
Posted by sixgoofykids (Member # 11141) on :
Joey, do you do the parasite or kidney cleanse before the liver cleanse? I was looking at the Hulda Clarke website .... it seems so complicated to do all those other cleanses first that I've never done the liver cleanse.
Do you do it exactly as stated on the website?
Posted by m0joey (Member # 13494) on :
I posted this on my ozone thread already, but my doc tested me for liver flush and said I need to wait another 3 weeks before I do even my first liver flush.
apparently this isn't something to be done on a whim.
I have read that the parasite cleanse should be done before liver.. not sure about kidney.
Dr. Pressman says the parasite cleanse is essentially wormwood, green hulls of black walnut, and cloves. Everything else is "window dressing."
Dr. Forrest (of Forresthealth.com) uses freeze dried garlic for his parasite cleanse. I take this 3x/day already, so on top of this and the Super W blend (wormwood) I took for 3 weeks, I'm too worried about the parasite cleanse.
Posted by m0joey (Member # 13494) on :
Here is the Lyme 2009 and Kryptopyrolluria (KPU) Protocol, as delivered at the Northwest Naturopathic Conference, April 25-26, 2009
a.m. before breakfast: Zinc 250 mg/day for 3-4 months (picolinate, gluconateor sulfate) Later in the treatment less zinc may be needed for maintainance Manganese 10-30 mg/day
with breakfast Arachidonicacid from Omega-6 oils: evening primrose, ghee, borage oil, black current oil
p.m. before bedtime: P-5-P 50 mg, B 6 25 mg Magnesium 600 mg MicroMinerals1 tbsp (BioPure)
skin/hair/nail symptoms: Biotin,
Posted by SForsgren (Member # 7686) on :
You can get most of it in one pill called Depyrrol except for the O6.
Posted by R62 (Member # 18531) on :
Thanks, Six and thanks for the links and info Joey and Scott.
I am giving up or moving up and getting zyto and getting full testing blood or zyto.
Metametrix GI Panel, PKU, Complete methylation panel.. all of it. I am tired of chasing remedies without a focus.
I'm still using antimicrobials, but carefully. If a herx goes bad (as last one did), I am cutting back and going on maintenance which is probably what I should be doing anyway until I figure this out. I dont dispose of toxins well.
[ 05-06-2009, 01:30 AM: Message edited by: R62 ]
Posted by sixgoofykids (Member # 11141) on :
Sounds like a plan R62!
I use the product Scott mentioned. I am remembering dreams again after a week and a half. My husband said I am noticeably less anxious (I didn't even know everyone else considered me to be anxious!!! I guess I've been this way so long, I didn't recognize it myself).
I also am noticing that some of my other psych issues are decreasing. Both my parents are OCD, and I've consciously worked on not doing OCD behaviors since I was about 10 and I recognized how useless the behaviors were but felt drawn to them. I am not having to fight it anymore, it's just not there, or the tendency to live in my imagination as much anymore. I guess I didn't realize I was a crazy person, LOL.
So, I'm seeing a real difference with this treatment, and so is my family.
I feel bad though. I'm a bit achey. I'm tired. I certainly am not feeling better with it, it's tough. I am not doing any other treatment right now other than detox.
Posted by SForsgren (Member # 7686) on :
I need it to start improving my OCD So far, still an issue. Probably Borna virus.
My aches and soreness, etc. are increased since starting as well. I think that's mild compared to the crashes that some face when doing this protocol - especially without a doctor.
Posted by sixgoofykids (Member # 11141) on :
I know, I know, I should have a doctor. The closest I've found thus far is Chicago, and I've considered going there. It's the Pfeiffer people ... the one that did a lot of the research on Pyroluria.
I'm concerned even more for a couple of my kids who show more symptoms of this than Lyme. Let's just say, Pyroluria would explain a lot in regards to my family history. When I read the "typical" pyroluria patient descriptions, there are very few symptoms I don't have.
I'm really amazed at how much this has helped the psych symptoms. I generally tried to hide these types of symptoms, and they are so unmeasurable that it's hard to describe here, I can just say that the difference inside my head is dramatic.
Posted by R62 (Member # 18531) on :
How do you find a doctor to help with this? It is bewildering how little some doctors know. I dont mean to sound negative, but its getting where I am moving though doctors like water.
I would not doubt at all that this is an issue for me. I also hear what you are saying, Six. One little round of minocin pulled a layer of psycho off of me and it was like a dark cloud had lifted. OCD, depression, anxiety... a nice layer lifted and it was like I had forgotten what it was like without the cloud. That said, I know there is more to go. Thank you for the supportive thoughts.:-)
Posted by sixgoofykids (Member # 11141) on :
I wish I knew R62. I've been trying to find one near me, too.
Posted by sparkle7 (Member # 10397) on :
(I don't sell this product. I am going to try the NDF Plus when I get my liver in better shape. I can't tell anyone if it works or if it's a good system.)
Posted by Healing in Santa Cruz (Member # 7798) on :
I used NDF and then NDF plus years ago. This was after I had all my merc fillings taken out. This is before I knew I had lyme and co. It was extremely harsh for me. I finally stopped.Very strong stuff. So go slow until you know how your body will do. I started with 1 half drop.
Posted by lymeparfait (Member # 14268) on :
How far into the treatmet was it for you when you first started feeling the "harsh" symptoms?
Posted by SForsgren (Member # 7686) on :
5-7 days for me
Posted by sixgoofykids (Member # 11141) on :
I was sick with a cold when I started, so I already had some bad symptoms. So for me, it just felt like I never pulled out of the cold fatigue. My worst symptom is fatigue, with some acheyness.
The big question is, when do these symptoms start to let up?
Posted by SForsgren (Member # 7686) on :
Probably different for everyone and probably has as much to do with how much the practitioner is supporting the detox and metal removal. Weeks or months depending.
Posted by Healing in Santa Cruz (Member # 7798) on :
I was already not feeling well when I started.4 days after starting protocal, symptoms started to get worse. Then there is symptoms from lyme and co.I am extremely exhausted and feel like I am drugged,among pain.One good thing is my anxiety is way better.
Posted by sparkle7 (Member # 10397) on :
There's alot of info on the BioRay site about detox in general. If you've had fillings for a long time - it's probably going to take a while to get the mercury out of your system.
According to the BioRay site - almost everything has some mercury in it - even cucumbers & other veggies, chlorella, etc. I think I read recently that fructose or corn syrup has alot of mercury.
It's really tricky with all of this. Seems like this detox is going to be a lifelong process which ever way you go. Heavy metals & mercury are everywhere.
Posted by n.northernlights (Member # 17934) on :
May I politely ask if KPU was not a significant issue for you, why are you dong a protocol for it? Just curious--not slamming you.
Hiker53
Posted by sixgoofykids (Member # 11141) on :
For those of you on the protocol .... I did a Hulda Clark liver cleanse and feel much, much better. I was hoping it would help, but it helped more than I had hoped for. This was my first time doing the cleanse. Not to get off topic ..... just wanted to let you know in case it might help you.
Posted by Cass A (Member # 11134) on :
Dear Friends,
A very good friend of mine who has done a lot of research on alternative medical issues wrote a long article some years ago about ZINC being a major factor in post partum depression and many other psychiatric problems, including schizophenia.
HOWEVER, taking a large dose of Zinc suddenly, instead of ramping up very slowly, can cause very, very, very serious reactions!!!!!
There is a liquid you can take to test your own zinc situation. It's called ZINC STATUS from Ethical Nutrients. The directions are on the bottle.
It also can give you a very SLOW way to move up with Zinc instead of banging up to 250 mgs right away!
Hope this helps!
Best,
Cass A
Posted by lymeparfait (Member # 14268) on :
Six, did you stop your KPU protocol to do the cleanse? And was this the two day version or the longer H.C. cleanse.
Posted by sixgoofykids (Member # 11141) on :
I didn't take the KPU protocol on the day I began the cleanse, but I started right back on it when I could start eating again the second day, so I only missed one day. It was the two day cleanse .... the one that you start on day and finish the next morning.
I'm still feeling great after the cleanse. Amazing.
Posted by lymie_in_md (Member # 14197) on :
Six -- That is great news, I'm very happy for you. You may want to plan another in a couple of weeks unless you feel this cleanse did it all. You'll know if you feel worse in a couple of weeks. whether to do another. Sometimes some of remaining, I call it sludge moves from the back of the liver forward and again clogs things up. I did four and feel I'm completely cleansed of all liver issues.
Since I've cleared the liver, I test a strong need for magnesium and candida killers and lots of photons. Keep the idea of magnesium supplementation after you feel the liver is clear.
Good information about zinc Cass. I find a more natural way of increasing zinc is pumpkin seeds. I get papitas from a nut store close by, I grind them up in a coffee grinder and take two tablespoons in my cereal in the morning. You could also use it in a salad as well. Pumkin seeds are naturally high in zinc content, several other important nutrients and fiber.
Posted by sixgoofykids (Member # 11141) on :
Thanks, Bob. I plan on doing another in two weeks. I won't wait a day longer as I can't wait to do it! I had an unbelievable amount of stuff come out, much like you had described to me only all peas, no grapes.
Posted by lymie_in_md (Member # 14197) on :
Six -- Because of energetic testing I found using bile salts (also thanks to Sparkle for having me look into it further) after you've complete the cleanses helps to rebuild bile in the liver. There have been studies showing that when bile is normalized in the liver it sanitizes the small intestines to the right amount of flora. Bile is the secret to reducing candida in the small intestines. Once candida is removed from the small intestines the large intestines have a greater chance to rebalance its flora as well. It could make probiotics much more effective especially progurt.
When I have time I'll post studies but it would probably be best in a new thread.
An interesting thing about bile, it helps metabolize fats and proteins as energy to be used by the body. If there is too little well where does the energy come from. But another fascinating thing about bile, it doesn't just leave the body, if the small intestine is totally rebuilt the bile is removed and recycle back to the liver. So bile is recycle all the time at about 95 per cent. So, by using bile salts, you rebuild the bile function of the liver over time.
Posted by sixgoofykids (Member # 11141) on :
Where do you get bile salts?
Interestingly enough, I don't have candida issues. Posted by sparkle7 (Member # 10397) on :
Sorry for the hyjack....
You can get them on the internet or at a vitamin store. I haven't tried them yet since the store had to order them. I have to go back there to pick them up. Glad it's working Bob...
-----
Bile Acid Factors (333mg) Description from JARROW
Bile Acid Factors consists of a mixture of highly concentrated bile acids (also called bile salts), mostly in the conjugated form, from U.S. and/or New Zealand bovine/ovine bile.
-Bile acids are produced in the liver and then stored and concentrated in the gallbladder, from which they enter the small intestines via the bile duct.
The major bile components in Bile Acid Factors are glycocholate and taurocholate, which are crucial for fat digestion and absorption.
-In the small intestine, bile acids emulsify fats to aid their absorption. Bile acid deficiency causes fat malabsorption and fatty stools (steatorrhea), indicated by diarrhea and floating stools. In addition, bile acid deficiency jeopardizes a person's nutritional status by reducing the absorption of fat and fat-soluble nutrients.
-Conjugated bile acids have been shown in clinical trials to be effective in improving fat absorption and nutritional status.
Posted by Cass A (Member # 11134) on :
Dear Friends,
Wow! This really is a fascinating thread!!
With Scott pointing the way, I did some research today on kryptopyrroluria and its handlings. Googling pyrole and manganese brought up some great info!
As for the current twist of this thread, to bile and digestion, according to my LLMD, the simplified 5 methylation factors plus chlorella are to help with bile production, so that the gunk actually gets OUT of the body!
I have taken bile in the past--perhaps I'll do it again, as part of the detox!
Best,
Cass A
Posted by sixgoofykids (Member # 11141) on :
Scott, you mentioned an immune activation phase. Will this include feeling like you have a virus?
I am feeling tired, have a sore throat, and a little post nasal drip. Since I've already had the latest cold that went around, I'm wondering if this has to do with the immune system kicking in.
I also had my babesia flare a little with a sweat last night and some minor air hunger today. I have had no air hunger in about a month, and no sweats for several months. Right now I just can't wait to go back to bed .... and I've been feeling really good the past week or so.
Posted by SForsgren (Member # 7686) on :
As I understand, it can include fevers and fluish like feelings as the immune system starts to improve and addresses backlogged infections. I've been on it for six weeks - have observed much more metal and toxin issues requiring binders, but have not had any clear immune activation yet.
Posted by sixgoofykids (Member # 11141) on :
Yes, I'm feeling fluish and feverish, though I have not taken my temp. I think my immune system is activating .... I don't feel like metals are being released, though I did before .... I'll keep up with the binders, but this feels more like the fluish, immune stuff.
My LLMD always thought I reacted to any herbs/meds he gave me (or my daughter) much, much quicker than the norm. At one appt. he kept telling us that over and over .... "You are not the norm." It was like he really wanted us to understand that, so it does not surprise me that I'm reacting to this treatment so fast.
Posted by sixgoofykids (Member # 11141) on :
Immune activation also fits from the healing reaction theory perspective. I felt really, really good and was thinking that the toxin release from this treatment had ended.
Typically a healing reaction kicks in when you're feeling your best because the body is strong enough to handle it. Fun.
Posted by m0joey (Member # 13494) on :
I had a babs flare detected in the brain. I'm not sure if this is related to KPU. It may have been related to emotions, because no other treatment (ozone, photons, rife, all supps) tested positive for it besides UV irradiation.
This is the first time an infection has come up in several weeks.
Maybe related to both.
Posted by sixgoofykids (Member # 11141) on :
What's UV irradiation? Tanning?
Posted by sparkle7 (Member # 10397) on :
I think he means removing the blood & exposing it to UV - then, putting it back into the body.
BTW - just found out the having a parasite called liver flukes can clog up the bile ducts... for what that's worth.
I think parasites are very under recognized in our culture...
Posted by sixgoofykids (Member # 11141) on :
I've actually been passing parasites with the KPU treatment. It's exciting every time I go to the bathroom, lol. I haven't even started the Humaworm yet .... starting that this weekend.
Posted by m0joey (Member # 13494) on :
Yeah Sparkle is right.
Man I have yet to see parasites in the toilet. Maybe I'm not looking closely enough...
Posted by sixgoofykids (Member # 11141) on :
Oh ..... you couldn't miss mine if you tried ..... yeah, some of the smaller ones could pass for food .... but the bigger ones (like a 12 in worm) need help exiting.
Posted by karenl (Member # 17753) on :
I am so happy about this post. I thought I am the only one with this condition. Need more time to study all the great links. Karen
Posted by sparkle7 (Member # 10397) on :
Good to see you have a sense of humor about it, six... Most people are terrified. I guess you get used to the idea after a while. I'm going to start a thread about it... to not hyjack this one.
I think most people have one or another parasite. When you get Lyme - it just tips the balance & it becomes an issue.
I don't know why people here in the US feel they are not affected.
Posted by m0joey (Member # 13494) on :
six--this would be your second round of humaworm right? Have you tried MMS?
Posted by sixgoofykids (Member # 11141) on :
This will be my third. One of the theories of KPU treatment is the parasites will let go after the balance is restored .... which I'm finding out already. I actually test well for Humaworm, so I'm going to give it a try.
I was also getting good results from Triphala, so I think I'll continue on that one afterward. I'm not on anything now except for support for the KPU.
Posted by sixgoofykids (Member # 11141) on :
Sparkle, how can I not have a sense of humor about it .... it's either that or throw up. (My BIL who does not have Lyme did the latter when he saw his worms, LOL)
Posted by ping (Member # 6974) on :
quote:Originally posted by SForsgren: Good question. Don't know. Dr. K generally won't even see patients that still have amalgams so for most, this is a very first step of treatment.
Interesting that Dr. K. has taken this position. I'm reading his info. and it says to begin detox and "as the amalgams are removed", have the dentist apply chlorella on the tooth area and hold it there for 10 minutes, etc...
I'm confused now.
ping "We are more than containers for Lyme"
Posted by SForsgren (Member # 7686) on :
It is such an important aspect of treatment for most people, that Dr. K doesn't invest in patients that still have amalgams. He generally has them go off and do the basic required work and then come back to work with him once that is done. I am sure there are exceptions.
Posted by ping (Member # 6974) on :
quote:Originally posted by SForsgren: It is such an important aspect of treatment for most people, that Dr. K doesn't invest in patients that still have amalgams. He generally has them go off and do the basic required work and then come back to work with him once that is done. I am sure there are exceptions.
Understand, and with as many pts as K no doubt is seeing, it's wise. I was just concerned that I read things incorrectly, but evidently it's okay to begin detox, even if you still have amalgams.
ping "We are more than containers for Lyme"
Posted by SForsgren (Member # 7686) on :
Answer is yes and no. Some agents are acceptable and others are clearly not acceptable if you still have amalgams. Your doctor should be able to help with that.
Posted by ping (Member # 6974) on :
My Dr. really has no idea about detox; that's why I'm following Dr. K's protocol. Figure after the P&B shake, I'll start Chlorella without the cilantro for a while and am on a high protein regimen. Will add cilantro very gradually, on Chlorella is at full dose.
ping "We are more than containers for Lyme"
Posted by SForsgren (Member # 7686) on :
Following the protocol when you don't fully understand it is unwise. I would find a doctor that can help you. If you go to a mechanic that does not know how to change oil, you find someone that can.
Posted by ping (Member # 6974) on :
Appreciate the heads-up, but no Doc available in my area. Tried to get RN via recommendation from Dr. K. who does phone counseling, but no return call as yet.
Doesn't sound like anyone completely understands these protocols, else so many questions wouldn't be flying around. Figure I'm pretty much on my own, just like most everyone else here.
ping "We are more than containers for Lyme"
Posted by sixgoofykids (Member # 11141) on :
I've definitely hit the immune activation part - body aches, sore throat, upset stomach, weakness, runny nose, etc. I guess I'm making progress?
Posted by m0joey (Member # 13494) on :
hey six,
great to hear you're having good results! mind if I ask how much EPO or borage you're taking?
Posted by sixgoofykids (Member # 11141) on :
The results don't feel so good right now!!
I'm taking 3000 mg. of EPO.
Posted by m0joey (Member # 13494) on :
Haha you know what I mean. We have twisted ideas of what feels good when you don't remember what feeling good feels like.
Posted by sparkle7 (Member # 10397) on :
ping - There are people here doing it on their own. You are not the only one.
Natropathic doctors are illegal in the state where I live. They can be sentenced to 1 year in prison & a $500 fine if people are caught practicing Natropathic medicine - with or without a license. The state will not issue licenses to anyone for this type of practice.
I also do not have alot of money to spend on this sort of thing in any case. I just try to do the best I can without alot of doctoring from an MD.
Keep up with it, six... I hope you will get through being in the trenches soon. I'm going through my own particular hell today. I do think I'm improving, though. I may want to try this protocol in time if I test for it.
Posted by sixgoofykids (Member # 11141) on :
Yeah, I know what you mean! I know it's a good thing. I feel like I have a virussoup .... every virus I've ever had kind of thing. I know it's good that my immune system is kicking in .... but I have to keep reminding myself of that.
Hubby and I are talking about taking some of our kids to Chicago to be tested by the Pfeiffer Clinic. That's the closest I can find. I fit the genetic profile and so do many of my relatives, so this answers a lot of questions for us. I think it's worth having my kids tested. My teenage son was thrilled to hear there might be something natural to help with his anxiety.
But as it is now, I'm doing this on my own. For me, I'm willing to take the risk. But for my kids, who are relatively healthy but show the pyroluria symptoms, I want to have them tested and their treatment overseen by a physician. We all have to weigh the risk/benefit of self-treatment. I understand Scott's concern, but some of us do it anyway on our own.
Posted by SForsgren (Member # 7686) on :
Any doctor can order the tests.
Posted by sixgoofykids (Member # 11141) on :
Yeah, but how do you find one who will?
Posted by sixgoofykids (Member # 11141) on :
I'm not being flippant, I seriously want to know. I never even found a doctor who would work with my LLMD. I can't find anyone here to help me with any of this ..... I would LOVE to know how to go about finding one.
Posted by Healing in Santa Cruz (Member # 7798) on :
Six, Would your LLMD be open and willing to learn about this protocal? I am also concerned about people doing this without a Dr. If this protocal helps a lot of people, many more Dr's will be doing it, hopefully.
Posted by ping (Member # 6974) on :
[QUOTE]Originally posted by sparkle7: [QB] ping - There are people here doing it on their own. You are not the only one.
Sparkle7 - Thank you so much. Hang in there. I can't afford too much MD either; after 5 yrs. hard-core abx and 2 yrs. maintenance abx, time for me to detox and find out what's going on.
Thanks again!
ping "We are more than containers for Lyme"
Posted by sixgoofykids (Member # 11141) on :
Healing, that is a good idea for me, but I am more concerned about getting my kids tested at this point. I live in Ohio and my LLMD is in NY. I haven't had an appt. since last Nov. when I got back from Germany (they said to call to set up an appt when I needed one, but as long as I was doing well, I didn't need to call).
It's easier for me to take them to Chicago than NY and my past experience with my LLMD is that he's marginally open to new ideas that I might bring up, it would be a really tough one to get him to do, I believe.
Thanks for the idea.
Posted by sparkle7 (Member # 10397) on :
ping - I know it's difficult but it can be done. I wasted too much time on doctors who didn't know what they are doing plus I went through all of my savings.
I have been ill for 13 years. For 9 of them I didn't know I had Lyme... Since I have been ill & not able to work much, I have spent years researching how to get well.
Everyone is different. We have to be cautious about what we do but for me I have been so ill that I needed to do something, anything...
I experimented on myself & sometimes it was harsh & I became very ill. I think I've finally cracked it, though. I will know more in time.
Everyone is different & we need individualized treatments. I can't tell others what to do. They may have a completely different constellation of symptoms than I do.
I'm not sure how dangerous this kryptopyrroluria situation is. I'd have to research it more thoroughly.
I believe that if we are very careful, we can successfully self treat.
Posted by ping (Member # 6974) on :
Sparkle - It's terrible that Lyme pts have to be so desperate for help. I'm fortunate because, as the guy in the movie said, I found docs that soaked me in abx else I wouldn't be here today.
As for kryptopyrroluria, I'm not overly interested in it at this time, more interested in plain, ordinary detox. I also understand the experimentation principle, as no one is going to care for you more than you; that's just the way it is and I wish you complete success.
Please touch base with me from time to time; PM or otherwise post. I'd like to know how you're doing.
Hang in there, friend.
ping "We are more than containers for Lyme"
Posted by sparkle7 (Member # 10397) on :
Yes, I did the abx for about 8 months but they were making me too ill. By then, it was probably too late. I'd already been ill for 9 years (at least).
Some people tough it out with abx but I just didn't feel like they were really going to do it for me.
So, I keep trying different things to see what will help. It's sort of like peeling an onion. You just have to get through the layers of dysfunction - genetics, epigenetics, toxins, pathogens, toxins from killing pathogens, mercury... It's a long & winding road.
Hopefully we will all get through it.
Posted by R62 (Member # 18531) on :
Six your mailbox is full.
All..
How would a doctor monitor PKU therapy? Testing for which metals are released and how to best chelate.. and provide proper chelation?
Scott..
I've been told by all three of my doctors, including the chelation specialist that I am not ready to hav my amalgams removed. This might change now that Myers cocktails and glutathione IVs have helped my tremors go away.. ?? I would hope Dr. K would provide initial support for people like me..
I am grateful for what I have and spent a lot of time finding the people I have and they are not well known LLMDs.. one is an open minded GP who is familiar with lyme, another focuses on preventative med and IV therapy and another an alternative who is somewhat lyme aware.
Non of them is PKU literate. I bet you can put the number of doctors who are on the head of a pin. This is scary for some of us. Maybe the doctors who are will put out more indepth info so we can share it with our doctors,,, the ones who are open to it.
Posted by sixgoofykids (Member # 11141) on :
R62, I cleared it out.
Posted by Healing in Santa Cruz (Member # 7798) on :
Is anyone with darker skin doing the protocal?
Posted by sixgoofykids (Member # 11141) on :
From what I've read, if a person has darker skin, they will likely be one of the lighter ones of their family. So, I person who is black can have it, but chances are he/she will be lighter colored than the others in his/her family.
I'm the palest in my family. My mom is pale. Three of my kids are pale. Not dark here .....
Posted by Healing in Santa Cruz (Member # 7798) on :
Thanks six, now I remember reading that somewhere.I am very pale also.Just asking for people I know with dark skin that have lots of symptoms. How are you doing? Actually, how is everyone doing?I have been in lots of pain and extremely exhausted. My MD gave me a Meyers cocktail w/glutathion, yesterday and it really helped.What a relief.I am still ramping up on small doses. My Md has quite a few peeps that have tested positive. I bet there are more than we can imaging that have KPU It affects lots of chronic illnessnot just us lymies. Healing Blessings Joyce
Posted by SForsgren (Member # 7686) on :
I'm finding it definitely shakes things up. Have felt that metals and other toxins are really stirred up with the KPU protocol - exactly as I was warned. Hopefully, down the road, the benefits will become more evident.
Posted by lymeparfait (Member # 14268) on :
I am medium skinned and tan..not burn in sun. But did test positive for KPU.
Posted by Healing in Santa Cruz (Member # 7798) on :
I agree Scott. And yes, benefits will be wonderful.Hope they come soon. Thanks Lymeparfait. How are you doing? I have also found that Organic Boneset tea is helping a lot with symptoms. Read about it in Healing Lyme by Buhner Good for Bart Babs,colds & flu.Its a pretty bitter taste but helps so much pacificbotanicals.com 541-479-7777 I receive no $ from this company.
Posted by R62 (Member # 18531) on :
My zyto has this as not a pressing issue, thank goodness. Guess that doesnt mean it wont become one.
Posted by Healing in Santa Cruz (Member # 7798) on :
R62, Confused with what you wrote. What is Zyto, and what is not a pressing issue? KPU? I'm a bit in la la fog land. LOL
Posted by R62 (Member # 18531) on :
Hi Healing..
Zyto is a form of Electrodernal Screening (EDS). Its like computerized kinesiology.
My numbers were below the level of concern.. which means it is not registering as an possible issue to day. The only way to really know is to do the urine test and I would if it was registering in the more concerning numbers.
When my son was muscle tested, babesia came "energetically." It also came up as not needing treatment.. could be he carries it, it is under control my his immune system, its not stressing the body. The zyto picks up on what is stressing the body or what zyto calls "stressors."
I dont know how it was programed to pick up KPU.. so I dont know what the "reading" means excactly.. I do know the zyto revealed I have more issues than I knew (well I knew I had huge gut problems and suspected it) and that as long as KPU is not showing as as significant stressor, I have enough on my plate otherwise like fixing my wrecked gut and looking into brucella as a possibly problem. Never tested for that one. It was higher than Bb.
Maybe someone will come along who can explain better than me.
Posted by sixgoofykids (Member # 11141) on :
I'm doing well on KPU. It seemed relatively easy for me to adjust ... don't know why. I seemed to have a detox reaction for the first couple weeks. That let up and I felt great for about three days, then my immune system kicked in. I had symptoms of many different viruses - runny nose, throat hurt, body aches, diarrhea, stomach ache, etc. Stuff you don't normally have all together.
That lasted several days then I felt better.
After three weeks on the protocol, I started Humaworm. I wanted to start it as soon as I could because it makes me feel bad and I wanted to have as many weeks of it under my belt as possible before the kids get out of school. So, I feel bad again.
I did another liver cleanse yesterday/today so I'm just pulling out of that. The first one I did had amazing results as far as helping with symptoms of being on KPU treatment. Today I was shocked at all the sludge. Hopefully, this will help with the detox I need for the Humaworm.
The biggest change has been emotionally. I've mentioned it before. The other day my husband and I were in what normally would have been an emotionally heated argument, but it was just a discussion.
After it was over he said it was the weirdest thing. He said he couldn't believe I didn't get upset, that whatever these supplements were that I'm taking, it's really made me different, noticeably different.
Posted by lymeparfait (Member # 14268) on :
I dont seem to be having any symptoms from the KPU protocol yet. At first I had a few days of leg pain, but it went away. May not be related to KPU.
I still feel that I am not detoxing. I have been feeling very inflamed, but this has been going on for several months. Those feeling have not subsided.
I did a HC liver flush, and did get constipation relief after...and still ok now.
Also doing the AI drops...but no reactions during or ending this round #2.
Posted by lymeparfait (Member # 14268) on :
How is this going for everyone?
Posted by sixgoofykids (Member # 11141) on :
Great for me. I seem to be through the worst of it. I am feeling better and others have noticed the changes in me emotionally. I'm a lot less anxious and handle stress better.
Posted by Healing in Santa Cruz (Member # 7798) on :
I have been having some rough days,but today seems a bit better.I slept 10 hours which probably helped. I am still slowly ramping up my dose. Still on small doses that are still rough. I cannot imagine me taking the big doses everyone else is doing. I just listened to the cd that Scott posted of Dr K and it is very good.Glad I bought it. Its called Treatment for lyme without abx Lots on KPU. From Apr 24-26 convention 1-800-468-0464 or www.treefarmtapes.com Posted by Healing in Santa Cruz (Member # 7798) on :
Forgot to say, every time I increase dosage symptoms get intense. I hope more people will look into this. I think I suffered a lot do to the KPU problem.Never ending herxes for 4 yrs. Actually 27 yrs but worse the last 4 yrs.
Posted by diana (Member # 7466) on :
Healing-what dosage are you up to? Are you referring to just the zinc a being a problem to tolerate?
Diana
Posted by SForsgren (Member # 7686) on :
I'm on 210mg of zinc and definitely the pot is being stirred. Energetically, I am still in the metal and toxin dumping as a result but also infections are testing strongly now which suggests that I am moving into the immune activation phase as anticipated. Will take more time to really see how this goes. Proceed with care and caution. It is not an easy protocol.
Posted by SForsgren (Member # 7686) on :
Thanks Scott.
Posted by sixgoofykids (Member # 11141) on :
Woohooo!! I just found a chiropractor who will work with me on this! He thought I'd be an interesting case. He'll test my kids, too!! (He can do all the blood work).
Posted by Healing in Santa Cruz (Member # 7798) on :
Hi Diana, I am doing under 50 mg of zink, B6, Pyr-5-phos,EPO,Manganese along with a multiple vit mineral,E,and my Cal mag C has some zink and maganese. This has all been energy tested for me. I feel its the whole protocal that is rough. I am also taking Niacinamide for anxiety. I felt pretty bad again today. Coffee enema and foot bath helped,also Reflexology. All I do myself Six,so glad you found someone to help you and kids.Take care everyone Joyce
Posted by lymeparfait (Member # 14268) on :
I went off while doing the liver detox, now starting back on the protocol. Anone else take a break then start back? Am I in for problems by taking this break? lp
Posted by Keebler (Member # 12673) on :
-
Scott,
Thanks so much for Klinghardt's link. And, I'm glad to see it's pretty easy. Since kryptopyrroluria is a secondary coproporphyrinuria (one category of porphyria) I've added this thread and that link to the Porphyria thread below.
Here's a link for a full range of the porphyrias.
If porphryia is a concern, a urine test may not be enough and can miss some forms of porphyria. But porphyria tests are very tricky and anything along the way to help identify these problems with liver metabolize are welcome. If more information is needed:
(with links to porphyria organizations, medicine charts for C P-450 meds, etc.)
-
[ 12-14-2009, 03:37 PM: Message edited by: Keebler ]
Posted by Healing in Santa Cruz (Member # 7798) on :
Hi Lymeparfait, I remember, I asked my MD if this protocal could be pulsed, and he said no. I didn't go into it further. I am having a pretty rough physical and emotional day and would sure love to take a break.Stress is not helping. Going to see if my md can give me a glutathion myers push to relieve some of the pain etc. Did you feel better when you stopped the protocal? Joyce
Posted by sixgoofykids (Member # 11141) on :
I wouldn't think it could be pulsed. If we really have this, then our body is deficient in these vitamins/minerals/EFA's. It would be like one of us who is anemic skipping their iron.
However, when I do a Hulda Clark liver cleanse, I do not take the minerals that day, nor do I take my iron. I do take them the second day once I start eating solid food again.
Hang in there, Joyce, when you get through, you'll be amazed!
Posted by Healing in Santa Cruz (Member # 7798) on :
Thanks Six. Waiting to be amazed. 27 yrs of hell is enough.
Posted by sixgoofykids (Member # 11141) on :
Yah, I know ..... been sick a long time myself. It's WEIRD to be feeling well. It's even weird to my husband, who continually asks if I'm okay because he thinks I should be crashing being busy day after day all day long.
Posted by SForsgren (Member # 7686) on :
Get your zinc and copper levels tested soon. You don't want to ignore that.
Posted by sixgoofykids (Member # 11141) on :
Scott, I recently came across this website for Depyrrol in English. The Depyrrol has 210 mg of zinc gluconate, but that only translates into 30 mg of elemental zinc, which is still within the tolerable upper intake levels according to the NIH. I was pleased to discover this info.
It might also explain why I kept "craving" two pills, but when I only took one, I craved pumpkin seeds instead. Now I'm craving neither, but for three days I thought I was going to start growing pumpkins out my ears.
Six, I am sure that must feel weird to feel so well. I get a taste of it every once in a while. Its like the real me pops out,no pain,no exhaustion,emotions level, happy,hopeful,positive I actually laugh which surprize's me,I don't laugh much anymore,eye sight better. This only lasts a few hours,longest was a day.Has not happened in a looooooong time, sorry to say.What a journey. Nice to connect with you. I am happy for you,gives me hope. Joyce
Posted by SForsgren (Member # 7686) on :
I've actually asked that of my practitioner, and they indicated that the 210 in Depyrrol was the correct amount for KPU. So it is still a high dose as I understand. I'll revalidate.
Posted by sixgoofykids (Member # 11141) on :
Yeah, it's high, but it's still within the limits of "safe", the NIH talks about copper deficiency at higher doses .... up to 40 mg per day is safe for someone older than 19. We need to keep in mind what's in other supps, but I'm not on much else right now and nothing else with zinc.
I'm just glad the correct amount IS within "normal" range .....
Posted by Healing in Santa Cruz (Member # 7798) on :
Scott,Were you meaning me or Six to get zink and copper tested ? Thanks J
Posted by Brussels (Member # 13480) on :
Hi guys, I'll be starting on the KPU soon too... I still keep testing for 'no need for zinc, no need for manganese', but if I re-state the question to 'do I need zinc to help me detox heavy metals' I get a strong yes...
My doc tested for all ingredients of the KPU protocol and they all test as helping me detox...
So there I go.... ---
Just a question, there are 2 types of Depyrrol, one is Kind (for kids) and the other is Plus (which my doctor suggested for adults).
Plus contents are approximately double from Kind (except for magnesium, that is almost 3x for adults).
Are you all on Plus?
--- Is there a place where I can buy both Depyrrol Plus + Vit B12 (METHYL cobalamin)? Or do I have to shop in different shops?
Thanks!
Posted by Brussels (Member # 13480) on :
I found a shop, no need to write... it's webvitaal.nl.
Posted by SForsgren (Member # 7686) on :
Was referring to Six, but anyone on it should be getting tested.
I am on Depyrrol "Basis". The zinc is about the same in both I believe between Basis and Plus.
I have the test here. Am unclear.. do you refrigerate the urine. Directions from Dr. K do not say to, but I want to make sure?
Do you start with the absorbic acid to the first urine collection?
I would assume stir at end and then just pour from the top, not midstream or end of orange juice container?
Sorry if I am being dense here. Just want to make extra sure.
Posted by R62 (Member # 18531) on :
up.. thanks
Posted by R62 (Member # 18531) on :
I have the test here. Am unclear.. do you refrigerate the urine. Directions from Dr. K do not say to, but I want to make sure?
Do you start with the absorbic acid to the first urine collection?
I would assume stir at end and then just pour from the top, not midstream or end of orange juice container?
Sorry if I am being dense here. Just want to make extra sure.
Posted by Healing in Santa Cruz (Member # 7798) on :
Hi R62, Wish I could help you, but I did not do the lab Dr K uses.My Md took my sample in his office and Quest Picked it up and sent it to Bio-Center Lab in Wichita, Ks. Test was covered by medicare. My info says if test is borderline & you have symptoms u should definitely try Pyroluria for 6 weeks. It may be that u need a lower protocal or your stress level was exceptionally low at time of test.IMPORTANT Do not take B6or zink 1 week before test. No caffeine for 24 hrs. Joyce
Posted by R62 (Member # 18531) on :
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.
Posted by Healing in Santa Cruz (Member # 7798) on :
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
Posted by R62 (Member # 18531) on :
Thank you for letting me know, Joyce. I hope it is.
Posted by R62 (Member # 18531) on :
Is there a network of doctors who are familiar enough to monitor this?
Does Dr. K's LIA conference talk go into how to manage KPU:
What kinds of tests to monitor and how often, for example?
Posted by Healing in Santa Cruz (Member # 7798) on :
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.
Posted by R62 (Member # 18531) on :
Thanks:-) Good articles he links to as well..
Posted by Healing in Santa Cruz (Member # 7798) on :
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.
Posted by LittleLymie19 (Member # 15610) on :
Bringing this back up again for an update on everyone who's doing/done KPU? How are you all? What has your experience been like?
Starting today Posted by djf2005 (Member # 11449) on :
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
Posted by aliyalex (Member # 6976) on :
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
Posted by sixgoofykids (Member # 11141) on :
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.
Posted by Healing in Santa Cruz (Member # 7798) on :
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.
Posted by LittleLymie19 (Member # 15610) on :
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...
Posted by aliyalex (Member # 6976) on :
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.
Posted by Brussels (Member # 13480) on :
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.
Posted by djf2005 (Member # 11449) on :
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
Posted by sixgoofykids (Member # 11141) on :
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.
Posted by Healing in Santa Cruz (Member # 7798) on :
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.
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