momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I'm a little confused on the whole cytokine process.
The way a friend explained it to me was that when her child is exposed to certain illnesses (strep being most common one) that it started a cytokine storm.
It sets off twitches in her daughter and raises her Anti-D-Nase titers.
The Dr mentioned that by reducing inflammation and the cytokine response would help calm this reaction down.
Examples were Benadryl , curcumin, ibuprofin.
Anyone have any thoughts on this?
I found this interesting and had never heard cytokines mentioned before.
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
I agree I get the twitches and break out in various rashes anywhere.
It's all inflammation causing it. You need to detox. One thing that helps me is drinking Aloe Vera juce.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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I talked to my LLMD about it (I have cytokine, mast cell, inflammation problems).
There are some drugs specific to mast cells (I can't remember the name).
My doctor recommended I take Neuroprotek because it has the least adverse reactions out of my choices. It's very expensive (the dose it by weight, so it depends on your daughter's size). There's a low-phenol version too.
I've been drinking nettles tea for years. It doesn't seem to harm anything, but doesn't seem to have enough oomph for me either.
I tried curcumin and it did nothing for me. You'll probably have to experiment with trials to see what works best for you daughter. You need to adjust the dose if you take curcumin with neuroprotek.
I'd try one herb/supplement at a time to see what agrees with your daughter.
Good luck.
Posts: 2839 | From California | Registered: Jul 2012
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Judie: is the Neuroprotek for Mast Cell Activation Disorder?
When I was having a horrible herxish/poisoning type feeling on Flagyl and Augmentin a few weeks ago, I took a Zyrtec and that made a huge difference.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Yes, it's for Mast Cell problems. I'm allergic to Zyrtec. It makes it worse.
Posts: 2839 | From California | Registered: Jul 2012
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
There's also some who find Singulair helpful during herxing.
Antioxidants and detox aides can help some.
Antihistamines such as Benadryl can help, unless someone is sensitive to the drug (or inactive ingredients). I can't handle Zyrtec, but am ok with Claritin.
There is also a drug called Gastrocrom, that supposedly stabilizes mast cells (prevents them from activating).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Judie: what type of Dr tested you for Mast Cell problems?
posted
Our llmd had us take FlexNow during inflammatory response flares.
Posts: 348 | From NJ | Registered: Sep 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"what type of Dr tested you for Mast Cell problems?"
I've had many doctors tell me I have this over the years. I've seen environmental illness docs, allergists, osteopaths etc.... I've lost count of how many docs have mentioned this.
I must have some tell-tale signs, but I know there's a skin scratch test some docs can do.
I tried the conventional "crom" drugs already and was allergic.
That's why I'm doing neuroprotek. It seems to be the only one I'm tolerating.
Posts: 2839 | From California | Registered: Jul 2012
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I found (took years before I discovered) distilled water to be very helpful with the detox/healing crisis periods.
I would drink a gallon a day until the worst of it was over. Usually 3 days. Of course distilled water can also remove minerals that are needed for the body.
After the really bad days were over I would go back to my filtered water and I made sure to take plenty of minerals to replenish what I could have lost with distilled drinking.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I found this article regarding cytokines. Maybe it'll be helpful.
"Luteolin triggers global changes in the microglial transcriptome leading to a unique anti-inflammatory and neuroprotective phenotype"
posted
Actos can "turn off" TNF which is increased in a cytokine storm. I took it for 10 days when I started CSM to prevent a major herx.
Posts: 631 | From the south | Registered: Nov 2008
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posted
I used Benedryl nightly for about six months. It definitely helped my gastro problems. I think it settled down Histamine in the stomach and helped my stomach cure. I also took Histame with meals and that helped the allergic reactions to foods.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
So is ibuprofen acceptable for lowering cytokines? How do we even know cytokines are an issue, is it present in all inflammation?
Posts: 131 | From Neptune, NJ | Registered: Oct 2012
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I just got back from my LLMD and mast cells were mentioned again.
One test that I took that always catches any doc's eye is I had my total IgE blood levels checked. They are crazy high (like 8 times above the highest number in the normal range).
High IgE might be one of the mast cell indicators.
I remember most of my blood tests are normal. One doc really had the "you must be faking it" vibe until we got that test back. He was the first one to run it.
He's the doc that refused to run a Lyme test for me claiming most people who say they have Lyme don't and the ones that do, don't know it. He was an allergist/immunologist.
He was an awful doctor except for the tests that he ran (I really got this feeling he wanted to disprove to me I was sick, the joke's on him).
Posts: 2839 | From California | Registered: Jul 2012
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