Topic: Food For Thought : Maybe we All Have CYTOKINE disorders ?
annxyzz
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posted
I have been reading about the immune system and have wondered about the possibility of LYME being a cytokine disease or disorder , instead of a REAL infection, because so many take a gazillion anti infectives and never improve. As best I understand , these chemicals make you feel you have an infection. Just wondering if the chemicals are what is making us sick rather than a pathogen .
Maybe a crazy idea , but wondered if this has been questioned by others . Blessings to all , jg
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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Keebler
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- Cytokines respond to toxicity. Borrelia is one of the most toxic infections known to mankind.
Lyme CREATES a cytokine storm. There is no way around that.
I firmly know that borrelia infection is very real, indeed. So are other chronic stealth infections.
I don't know how to phrase this in a tone that may not seem sharp . . . really, just neutral tone here,
I think those who want to say this is a "cytokine disorder" are wanting another trash bin like the labels of "CFS" or "Fibromyalgia"
Should we work to keep that cytokine storm from turning into a raging hurricane? Sure. And there are ways to help.
Stinging Nettle is just one thing to help calm down that cytokine storm.
But, with infection(s) adequately addressed, the cytokine storms stop.
But, here's the biggest problem, treatment is far - so very, very far - from perfect. Treatment options all are just horrid, IMO.
We really have no optimum options and are shooting in the dark, for the most part and that can also damage our body without even affecting the infection.
These kind of stealth infections are "brilliant" -- I want to finish this but just can't think to do so.
But, please, do not underestimate stealth infections. I wish we had more minds studying their nature. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- annxyz,
I wonder if something from TIMACA's thread here may be of help:
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- STINGING NETTLE capsules may help calm the cytokine storm. --------------------------------------------
. . . Nettle leaf extracts reduce inflammation, in part, by suppressing the release of inflammatory cytokines.
They do this by blocking a chemical inducer known as NF-KappaB, which alters gene expresion. This may be one explanation for the beneficial efffects this herb has exhibited in rheumatoid arthritis (Riehemann et al., 1999). . . .
. . . its ability to slow down the inflammatory cytokine response caused by endotoxins. . . .
For Lyme-related joint pain, Buhner recommends Nettles 1200mg/day.
I have found Nettles (I use organic powdered nettle leaves) to be fantastic for relief of my joint pain - including the wandering joint pain in my legs, arthritic hand pain, etc.
(end quote by Razzle) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- The lyme toxin is "similar to that of botulinum." ------------------------------
Because many of the symptoms of Lyme disease involve the nervous system, it was speculated that the spirochete produced a toxin that disrupted normal nerve function.
Through the use of DNA manipulations and a database of known protein toxin DNA sequences, a match was made with a selected Borrelia burgdorferi (Bb) gene and a specific toxin in the database.
Protein generated from this cloned Bb gene was examined biochemically and found to have characteristics similar to that of botulinum, the toxin of Clostridium botulinum, a zinc endoproteinase.1
The toxin from Bb belongs to a family of toxic proteins known as "zinc endoproteinases" or metalloproteases, and includes the toxin from the organism causing tetanus as well as those from many other well-known infectious diseases. . . .
=================================
He has written much about the science of lyme & how it can evade even the best treatments we have available right now.
He also got much better - you might want to find where he speaks to how:
Tom Grier, Microbiologist -
Posts: 48021 | From Tree House | Registered: Jul 2007
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tickled1
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posted
On the topic of cytokine storm, does anyone know how or why cholestyramine causes cytokine storm?
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Keebler
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- tickled,
Not sure but it CSM (cholestyramine) sure clobbered me. I think my reaction was because it depleted my body of valuable minerals.
Magnesium is essential in helping the cytokines stay as calm as possible. Magnesium is the best helper again any excitotoxins.
For me, I got a sense that CSM seemed to negate magnesium and other good nutrients.
Even with the best support methods, I think some folks can "do" CSM and some can't, & some REALLY can't. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
All I know is cholestyramine did something horrible to my body. I was in a horrible cytokine storm.
It actually caused damage which is evident in my labwork.
At the end of Feb 2012, my ANA, TSH, Free T3 and Sed rate were all negative (for ANA) and all others were normal.
Over the past year, my sed rate never, ever went above 10 at my sickest. It would waver between 5 and 10. My thyroid was ALWAYS normal...Then 6 days after the cholestyramine incident, my labs showed my ANA is now positive at 1:1280, my sed rate is 38, and TSH and free T3 show my thyroid is now shot.
This was my body's reaction to Cholestyramine pulling whatever out of my body.
WARNING: DO NOT ALLOW YOUR LLMD TO EVER PUT YOU ON SOMETHING THEY ARE JUST LEARNING ABOUT...it can be dangerous.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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tickled1
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I didn't react well to it. LLMD indicated he would like for me to try it again starting out at lower doses but I don't think so. I'm tired of testing out this and that on myself. I feel like a guinea pig.
Posts: 2541 | From Northeast | Registered: Jan 2008
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canefan17
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Buhner herbs indicated here?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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My post under TF's top notch thread explains my journey. Believe me, I am b-r-o-k-e with 2 kids. But, I had to suck it up, pawn the wedding rings, beg for help and get myself to a better Dr.
Now, instead of throwing antibiotics at me or cholestyramine or whatever, and just asking me to detox more, my current Dr is working on getting my body to slow down on the cytokines so they can then go after the bugs.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Keebler
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- Along with Stinging Nettle, Gotu Kola, Carob root powder, Smilax and LOTS of fiber help, too. That's what I came up with as my version of CSM.
MEDICAL MUSHROOMS can also have a nice effect on the nerve fibers. Lion's Mane is the most important, I think, for nerve repair. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sixgoofykids
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This was one of my favorite articles when I was sick because I had a lot of cytokine issues.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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annxyzz
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To Consider : From what I read lactoferrin is a modulator of immune system . Any thoughts? Keebler, I read stinging nettle is also an immune modulator.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
Interesting article six. (I hope and pray someday, like you, I can post about the time when I WAS sick. *past tense*)
Anyway, raising glutathione has been the key to reducing some of my misery over the past couple of weeks. (along with low dose naltrexone, plaquenil, and lots of supplements to help my body reduce inflammation, detox and produce glutathione on its own).
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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sixgoofykids
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I thought the article was a huge help!
I regularly took turmeric (I still do because I'm a pilates instructor going for additional training and am known to overdo it). Whey protein was another staple for me. Vitamin D.
Coffee enemas are good for raising glutathione, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
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- Speaking of glutathione, it's important to know that acetaminophen blocks the liver's ability to produce (or manage) glutathione. That can make things worse instead of better.
Even one single small dose can set about this switch in the liver.
Some Rx and many OTC products contain acetaminophen. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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As a teenager (years ago) I used to constantly take Tylenol for headaches. I wonder if that contributed to my body's inability to produce Glutathione?
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Keebler
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- Yeah, I used to pop the stuff like candy due to horrible menstrual cramps. It never helped but it's all that was available to me back in '70's (under the OTC label, Percogesic).
One week a month, I was just saturated with it. Looking back, so much makes sense but so much damage was done and it could have - should have - been different.
My college medical sure clinic set me on the wrong track.
Decades later, treatments with naturopathic doctors finally totally relieved such cramping. Totally. After decades of lost time, failing grades and jobs, and unbearable pain.
Wish I had considered this long ago. At Percogesic's site, today, they say:
Before taking this medication, tell your doctor if you have
liver disease; . . .
--- When my mother was dying, with liver disease and HIV, she was given only Tylenol #3 for pain. That's it and it did not work.
No wonder. -
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tickled1
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Wow Six, awesome article!!!
I see it is from 2002. Do you have anything more current related to this topic?
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sixgoofykids
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No, I haven't done any more research on it. I found that article a few years ago and the ideas helped, so I bookmarked it so I could post it here when the topic came up.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tickled1
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It really is a great article. Thanks so much for sharing it.
May I ask what your think were the most important things that have led to your recovery?
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annxyzz
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The article about cytokines posted by SIX KIDS here seems to go along withe my question . At some point , MAYBE, we all have infections that disrupt the immune system and the cytokine gun will not stop firing the flu or pain chemicals . This is just a possibility I have wondered about .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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tickled1
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Maybe.....you mean like "Post Lyme Syndrome"?
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sixgoofykids
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quote:Originally posted by tickled1: It really is a great article. Thanks so much for sharing it.
May I ask what your think were the most important things that have led to your recovery?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sixgoofykids
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quote:Originally posted by annxyzz: The article about cytokines posted by SIX KIDS here seems to go along withe my question . At some point , MAYBE, we all have infections that disrupt the immune system and the cytokine gun will not stop firing the flu or pain chemicals . This is just a possibility I have wondered about .
My cytokine response stopped when I got rid of the infection. I did have to address toxicity, healing the gut, etc., but the cytokine response stopped when the infection was gone, much the same as it stops when the flu passes. I found the stuff in the article helped a bit when I was sick.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tickled1
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Yeah, don't think I believe in Post Lyme Syndrome. It's still active infection of some sort.
Six, What did you do specifically to address:
Heavy Metals
Detox
Parasites
KPU
Diet
Also, have you had to continue on a specific diet?
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sixgoofykids
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Heavy metals - zeolite, ALA, NAC, Detoxamin for lead - way back in 1991 I had my amalgams removed and chelated mercury then
Detox - Hulda Clark liver cleanses, coffee enemas, whey protein, bentonite clay (not often), keeping bowels moving, etc.
Parasites - Humaworm, enula, oregano oil
KPU - Depyrrol (it was before The Core was available)
Diet - eating healthy
I do not *have* to continue on a specific diet, but I do. I grew up in a family where fitness was a big part of our life, diet, too. I grew up on food made from scratch, and I still eat food made from scratch. I eat paleo style because I like the way it makes me look and feel at 49. My husband eats this way, too, and he was never sick. It's our lifestyle.
I have no problems if I decide to go out for pizza and beer or something else not on my "diet." I eat this way because I want to, not because I have to. I hope that makes sense.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tickled1
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Thanks Six! I really appreciate you elaborating on that. All of the specific issues you mentioned are the very things that have come to light for me most recently as being my biggest problems.
I have had a lot of difficulty addressing these issues as I react badly to everything. I'm hoping my doctors can figure out how to proceed since I can't tolerate anything.
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sixgoofykids
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You're welcome! Don't try to do too much at once.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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annxyzz
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I do think personally that we have active infections, maybe of a wide variation even, but somehow thw infection warped the immune system and renders it incapable of full function .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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tickled1
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Yes, God knows our immune systems are dysfunctional.
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