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.
Posted by bigstan (Member # 11699) on :
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.
Posted by faithful777 (Member # 22872) on :
There are detox supplements and some work better for some people than others. Alpha Lipoic Acid, NAC, Milk Thistle, Tumeric, etc.
Proteolytic enzymes like lumbrokinase, or serrapeptase can help reduce inflammation but must be taken on an empty stomach.
If you have access to an infrared sauna, they help too.
Posted by Lymetoo (Member # 743) on :
I know when you begin CSM you will get a cytokine storm. I never understood much of that!
Posted by momintexas (Member # 23391) on :
What is CSM?
Posted by surprise (Member # 34987) on :
Cholystramine powder- used to reduce cholysteral, but being used off label by some LLMD's
to pull out toxins/mold - works with bile, etc. prescription.
Sounds like what your friend is saying her child has PANS/PANDAS.
Buhner's new book about mycoplasma and Bartonella goes into cykotine storms in the body from these infections, and possible herbs to help
(I just ordered the book, but Amazon let's you read an excerpt from the book)
Basically, like others have said, inflammation run high and destructive.
Posted by Cockapoo1996 (Member # 14238) on :
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.
Posted by lax mom (Member # 38743) on :
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.
Posted by Judie (Member # 38323) on :
Yes, it's for Mast Cell problems. I'm allergic to Zyrtec. It makes it worse.
Posted by Razzle (Member # 30398) on :
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).
Posted by lax mom (Member # 38743) on :
Judie: what type of Dr tested you for Mast Cell problems?
Posted by Bitten in Bergen (Member # 34067) on :
Our llmd had us take FlexNow during inflammatory response flares.
Posted by Judie (Member # 38323) on :
"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.
Posted by map1131 (Member # 2022) on :
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
Posted by Judie (Member # 38323) on :
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"
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.
Posted by marypart (Member # 27012) on :
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.
Posted by Hmm... (Member # 39308) on :
So is ibuprofen acceptable for lowering cytokines? How do we even know cytokines are an issue, is it present in all inflammation?
Posted by Judie (Member # 38323) on :
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).