SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Been on this protocol for just over 2 months. It has not been easy. I am still going through more metal release and the past 3-4 weeks an immune activation phase it seems.
I don't know of anyone that started this and did not experience some immune response / worsening of symptoms. I'm optimistic still but thus far, it's been more feeling worse than feeling better.
That said, I was warned before I started that this would be the case for several months.
I think it is also important to closely monitor zinc and copper levels via blood testing along the way.
Thanks for sharing the link above!
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
--
Thanks, GiGi,
It's good to see more attention to the expanding field of porphyria, especially its connection to chronic illnesses - with some detailed specifics to address.
The article is basically saying KPU is a symptom of mitochondrial disease. I've said many times that mitochondrial dysfunction is the underlying problem to be looked at for those of us with CFS symptoms... maybe it should also be looked at more closely by those without expressed chronic fatigue if you've been diagnosed with KPU.
The NO theory is old hat. Many CFS researchers have already cited increased NO metabolism leading to oxidative stress as the last crucial step to developing CFS & fibro symptoms.
[ 06-23-2009, 06:50 PM: Message edited by: m0joey ]
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
I'm also on the protocol ... two months now. I felt bad the first three weeks, and now feel perhaps the best I've ever felt. Still working on GI issues, but most of my health complaints are resolved.
I did have chronic fatigue that had gotten better with Lyme treatment, and I think this has even given me more energy.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks Gigi for posting this. I feel its a BIG piece of the puzzle for me and many others. I tested positive and have been doing the protocal since April 16,09. It has been very rough. My Md has me and his other patients ramping up on the protocal,so I am doing it different than most. I had a fairly good day 2 days ago,so having more hope that I can get better.Now back to pain,heavy exhaustion depression and other symptoms.I am very grateful my Md went to Dr K conference and found out about this protocal. It looks like it can be genetic or caused by infection,stress,toxins etc. For those that are seeing this for the first tim search here fo Pyrroluria, Kryptopyrroluria,or KPU.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Scott,
"Been on this protocol for just over 2 months. It has not been easy. I am still going through more metal release and the past 3-4 weeks an immune activation phase it seems."
This is the very reason why I believe AI, correcting the information base, is priority.
Just one reason: I have not seen one AI test result of any of my friends who is not allergic to copper, a very important player with zinc and manganese We have a dynamic system - all things are connected.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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lymeparfait
Unregistered
posted
Interesting, I have stopped the KPU protocol as I thought being on both the AI and KPU may be conflicting. Did test positive for KPU. But decided to wait and re-test after the AI therapy is complete.
I was on it for about 1 month after being on AI for a month.
But now I am having problems I believe detoxing from the AI...as I have been accumulating loads of fluid and fat. I'm a thin person, now with fat pockets everywhere, almost overnight.
Could this also just be my body regulating?
Are things being eliminated from my cells and tissues, and not leaving my body?
Very disturbing to me. Not sure what to do.
Any thoughts from others doing AI and KPU?
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posted
Many are doing AI and KPU together. Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by lymeparfait: Interesting, I have stopped the KPU protocol as I thought being on both the AI and KPU may be conflicting. Did test positive for KPU. But decided to wait and re-test after the AI therapy is complete.
I was on it for about 1 month after being on AI for a month.
But now I am having problems I believe detoxing from the AI...as I have been accumulating loads of fluid and fat. I'm a thin person, now with fat pockets everywhere, almost overnight.
Could this also just be my body regulating?
Are things being eliminated from my cells and tissues, and not leaving my body?
Very disturbing to me. Not sure what to do.
Any thoughts from others doing AI and KPU?
lymeparfait,
Hope you don't mind my opinion, as I'm a soon-to-be AI person and not on KPU. I'm desperately hoping that AI will make it possible for me not to deal with KPU and if I do have to deal with it, only mildly.
Your comment about the 2 possibly conflicting IS my main worry. You're right. How do you know what is doing what and are they really compatable (done at the same time)? From the description you gave re: fluid buildup, pockets of fat, etc., if I were you, I'd be very concerned also. Another concern is, how is your daughter doing? Any of the same sx's? I'm curious about what you're doing for general and particular detox?
ping "We are more than containers for Lyme (& metals, chemicals, food allergies....)"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Lymeparfait, it looks like you need urgent manual lymph drainage, microcurrent to help drainage, or camphora homeopathic rubbed on all lymph nodes to help your lymph move?
I wonder if your body is now recognizing the toxins and expelling it, but your lymph is not able to expell everything as fast?
Just a feeling....
I just wonder if doing AI without supporting the body to detoxify (the same way one is supposed to do while killing or chelating) can't be a bit 'dangerous'.... Any opinions?
AI looks innofensive, but I guess some people would need more detox support than others while on AI?
Posts: 6199 | From Brussels | Registered: Oct 2007
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
lparfait,
Just looking over some of the AI posts and GiGi was recommending cilantro pesto for Lymph support. I think the manual lymph stimulation is a very good idea (along with other foods / drinks for drainage) right now. You sound like you have a real bad case of some type of edema. Since I'm already prone to edema (hypertension, etc.), I've got to be real careful.
Brussels - By no means is AI recommended with no elimination support whatsoever. I'm planning Pectin, psyllium and a host of other foods and drinks to help with drainage. I wouldn't even consider it otherwise. I will also still have to take my rx meds (no abx).
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
In the case of KPU/HPU, the biochemicals --- B6, manganese, and zinc are used, plus oils, etc. etc. etc.
We can pump as many materials into the body as we want, unless the body recognizes all of them and makes use of them, nothing will happen except that they are deposited somewhere to increase the burden to the body even further.
I ran this by AI a while back and that is exactly the answer I expected and the answer I got.
Is that one reason why several people have such a hard time when on KPU?
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Hi Ping,
"GiGi was recommending cilantro pesto".
Don't know where you read this, Ping. Maybe confused it with Dr. K. who loves to eat Cilantro Pesto as a food. I don't. I think he would also be quite careful before recommending it carte blanche.
This really doesn't belong to this thread, but since you brought it up, I will comment.
Just for the record, Cilantro pesto is not something I have taken or recommended. Reason: Cilantro prepared in a certain way can also act intracellularly and that is not something I would suggest anyone take, without the advice and testing by a qualified physician who UNDERSTANDS CILANTRO (like Dr. Yoshiaki Omura who discovered and researched cilantro re metals to the hilt.) Some people during certain stages cannot even tolerate one drop of cilantro tincture, by mouth or derma.
AI works on a different level and has nothing to do with what KPU/HPU is all about. Information vs. Biochemial effects. I have also been told, as a rule, homeopathics should not be used while on AI. Homeopathy and AI therapy are not related at all.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Friends,
Interestingly, I had come to take just about everything on the KPU protocol without knowing about KPU, due to various body issues I'm dealing with and researching what would help them.
Not necessarily at the doses recommended by Dr. K, but these substances had become part of my supplements routine.
If I could safely get off the supplements while doing A.I., I would do it.
As for homeopathy, the A.I. materials that come with the first drops say that it is counter-indicated while doing A.I.--the same with chemotherapy for cancer.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Originally posted by GiGi: Hi Ping,
"GiGi was recommending cilantro pesto".
Don't know where you read this, Ping. Maybe confused it with Dr. K. who loves to eat Cilantro Pesto as a food. I don't. I think he would also be quite careful before recommending it carte blanche.
GiGi - Read it in your post on A.I. You said a nurse recommended it to you for for lymph drainage, watermelon for kidneys and sauerkraut for liver. "Drain, drain drain". That post, remember?
In any case, I'll start keeping my references and AI comments to myself.
ping
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Cass A,
Please don't do anything that you're research and intuition is uncomfortable in doing. The only reason I'm doing it is because I'm not in tx for active Lyme anymore and want to get rid of peripheral issues.
Whatever you do, I wish you the very best.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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lymeparfait
Unregistered
posted
Thanks for you input all concerning my fluid accumulation.
I should probably put this on the AI post...but it's related to detox pathways as well.
I believe lymph has always been a problem for me, as I have been able to pick up pounds of fluid very quickly for no reason. But this is over the top!
My family has noticed the excess weight, and its unusual for me!
It happened with the last set #3 drops of unknown chemicals. The back of my knees and breasts are swollen as well during this time, and I feel toxic movement in my body...if that makes sense to you. Hard to describe the tingling, and tightness in my toes and my extremities...not severe or debilitating, but very there.
I am nervous as I had also been diagnosed previously with Lupus, and these are some of the symptoms that come with activated lupus!
Concerned that the AI regulation has brought out these symptoms. If I knew this was the case, and it was being regulated, I could relax and wait it out. But I may be doing damage to my internal organs! No one has posted about AI and lupus.
I need to add more drainage to my regime.
Selma, homeopathy is new to me...where are the lymph drainage spots? I will try to find some camphor to rub on them. Any suggestions of brands to order?
another poster recommended Pekana remedies for lymph, using a rebounder and Infrared Sauna....
posted
I get massages from a guy trained in lymphatic drainage and craniosacral techniques. I find it helps more than my rebounder, though the rebounder is good.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I started eating large amounts of cilantro pesto six months ago. Big mistake. it made me quite ill in 4-5 days. Docs are sure I don't have a heavy metal issue though,
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymeparfait
Unregistered
posted
Thanks Six, Seek, Ping, and all! As usual I"ll keep reporting..
Nana...your mailbox is full! Thanks for everything!
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posted
Hi again R62, Since I didn't do the test ur doing,unable to help you. I think they did put it in the fridge or freezer.You are not being dense,all directions should be more clear,especially for us with lyme. Joyce I am sure others will come along to help u.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
LP, since Lupus is often drug or chemical-induced, don't you think it's very likely that your symptoms are related to this round of AI dealing with certain chemicals?
It sure makes sense to me, but I understand your concern. Just don't be too quick to panic on this one.... other symptoms have come and gone, too.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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lymeparfait
Unregistered
posted
Thanks for that thought about the lupus and chemicals...Truthfinder. I am trying to think it is just the AI working! But I still feel like Im experimenting! Lupus can quietly do so much harm. Lately my knee and elbow joints are hurting off and on, and my toes are getting blistered when slightly exposed to the sun by walking outdoors briefly in sandels. The sun sensitivity is definately a big lupus symptoms for me. Thanks for the support, I"ll keep you all posted. lp
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
lp -- I think your over toxifying your kidneys. Time to start thinking about drainage remedies. I've been using herbal teas with marshmallow leaf, hydrangea root, goldenrod and gravel root. And its helped a great deal for any fluid retention i had. also celery seed tea in the morning. Just do some research on kidney's and bladder.
Good luck
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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lymeparfait
Unregistered
posted
Bob, the teas sound great. I"ll give them a try.
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
It's also possible to reduce the number of drops, right?
Seems like the basic premise is to `allow' the body to re-align itself and expel that which is undesirable , not to `force' it into anything.
Nice list of supportive teas for the kidneys, Bob.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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lymeparfait
Unregistered
posted
Actually, I have been sending in my saliva sample only a week after completing the drops, as to not have too much time between taking the next set, with the time lag on postal service between Germany.
I am actually taking the new sets approx. 2 weeks apart. 2 weeks on and 2 weeks off
Maybe I should wait longer between the sets to allow more regulation to occur.
I was rushing things mostly for my daughter, to get enough sets in her before going to college this fall. Doing it all together with her so as to keep track easier. Those of you with kids and lyme know how overwhelming treatments can get to monitor.
I'm a controlling mother when it comes to protocols! Don't trust my teens to keep up.
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Ah, I see. Perhaps you are moving a bit fast, but I can understand the reason for it.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Hi guys, could you post your comments about AI on the AI thread. Allergie-Immun Germany. AI and KPU are really totally different subjects and people not familiar with either of them may get confused. Thank you.
Posts: 9834 | From Washington State | Registered: Oct 2000
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