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Cytokine Storm: Almost Fatal  This thread currently has 2,352 views. Print Print Thread
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san j
Wednesday, February 29, 2012, 4:24am Report to Moderator Report to Moderator

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"Cytokine Storm".
This is what it was, folks.
This is what almost killed me this month.
I've been home from hospital now a week, suddenly gaining in strength the past few days.
It began as a typical sort of one-lobed community-sourced pneumonia but, in hospital while I was "under observation", went critical, spreading to all lung lobes and nearly suffocating me, landing me in Critical Care for 11 days.
I won't tell the whole story here.

But I've been surfing the cytokine lit on the web, and if you know of a really cool link, I'd be vitally interested. Do share what you know.
Thanks.


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Christopher1
Wednesday, February 29, 2012, 4:32am Report to Moderator Report to Moderator

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I read something on this website about elderberries and cytokine storms a while back.

Hope you get better soon.
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Possum
Wednesday, February 29, 2012, 4:45am Report to Moderator Report to Moderator

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Oh san j???!! I had no idea
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san j
Wednesday, February 29, 2012, 4:58am Report to Moderator Report to Moderator

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Quoted from Christopher1
I read something on this website about elderberries and cytokine storms a while back.

Hope you get better soon.


Thanks; I had checked those out. Did a search under cytokines this a.m. But thought I'd put it out there to our unusually educated membership.



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Spring
Wednesday, February 29, 2012, 5:00am Report to Moderator Report to Moderator

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How awful, San J! I am so sorry.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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C_Sharp
Wednesday, February 29, 2012, 5:46am Report to Moderator Report to Moderator

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Cytokine Storms and the Pharma Pirates

http://www.healthfreedomusa.org/?p=2698

Why you should not take elderberry for cytokine storms/pandemic flu:

http://the-health-gazette.com/496/natural-antivirals/


MIfHI                            I follow a SWAMI diet.
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Possum
Wednesday, February 29, 2012, 6:02am Report to Moderator Report to Moderator

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Eek how can you tell which is cytokine storms/pandemic flu??!!
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ABJoe
Wednesday, February 29, 2012, 6:09am Report to Moderator Report to Moderator

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San J,
The Wikipedia article about Cytokine storms here describes the situation pretty well and has some discussion and references specifically about the lungs.

http://en.wikipedia.org/wiki/Cytokine_storm

Here is the Quodlibet map for Adipocytokine signalling:
http://www.datapunk.net/quodlibet/quodlibet.pl?adipocytokine+

You can step through the map and study the operation and see what natural remedies are indicated for each gene, etc...


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Lola
Wednesday, February 29, 2012, 6:15am Report to Moderator Report to Moderator

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Quoted Text
Dr D
influenza has to do with it having the potential to ramp up cytokines, which increase the inflammatory reaction. This is more of a problem with people in the age group of 15 to 35  (older and younger
people have a more moderated immune response)"


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
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Lola
Wednesday, February 29, 2012, 6:16am Report to Moderator Report to Moderator

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happy to know you are not in that age rang and still among us!!!


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
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Possum
Wednesday, February 29, 2012, 6:23am Report to Moderator Report to Moderator

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So apart from avoiding those drugs that have been shown to have no effect in lung health & instead, using Gemfibrozil, free radical scavengers (antioxidants) & TNF-alpha blockers (some types of arthritis medications) & avoiding bananas... is there anything I have missed?
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PCUK-Positive
Wednesday, February 29, 2012, 11:46am Report to Moderator Report to Moderator

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Dr D Knows


Kind Regards PC. FIfHI Swami III Pro

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Andrea AWsec
Wednesday, February 29, 2012, 12:51pm Report to Moderator Report to Moderator

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http://www.4yourtype.com/prodinfo.asp?number=NP048

I know a few B's that take the security on a regular basis for a healthy immune response.


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NewHampshireGirl
Wednesday, February 29, 2012, 2:18pm Report to Moderator Report to Moderator

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I have learned a lot about cytokine storm that I never knew before.  I have always wondered what made the Spanish flu so deadly!

San-J, I'm so glad you are on your way to better health, now.  You have gone through a tribulation that I would never, ever want to go through.  Thank you so much for sharing your story.  
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Jane
Wednesday, February 29, 2012, 4:06pm Report to Moderator Report to Moderator

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San J,
Glad you are feeling better.  What a scare!

Oddly enough, I had some pain yesterday in what I think was my left bronchial tubes.  I went home and took some Elderberry Syrup with Honey (Apitherapy) and feel better today.  I hope that it was the right thing to do. Yesterday it was bothering me so much that I almost went to the Dr. but was so busy at work that I didn't.  I haven't had any problems breathing but I've had a terrible time with sinus issues....not enough that I feel like I need to constantly use the neti pot but just enough to feel like there's just a little drip there.  I think I may be eating too many eggs.  As a kid, I was allergic to the whites but I eat organic ones frequently now.  

Think I'll have another cup of green tea....

Jane
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ruthiegirl
Wednesday, February 29, 2012, 4:18pm Report to Moderator Report to Moderator

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How scary! I'm glad you pulled through and you're on the mend now.

I'm still confused on the whole elderberry/ sick teenager thing. If my 17yo shows signs of illness, do I tell her to take more proberry or to cut it out for a few days?

I know that I'm old enough and DS is young enough not to worry about that. Besides, he hasn't gotten sick since I started giving him cod liver oil daily.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  13yo B+ Jack


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PCUK-Positive
Wednesday, February 29, 2012, 5:01pm Report to Moderator Report to Moderator

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Jane - From reading about this it would not be such a good idea to eat honey if you are having a Cytokine Storm.


this is where the body over reacts - honey and the like may help an under active immune system, perhaps like an A's.

I think that's right.


Kind Regards PC. FIfHI Swami III Pro

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Jane
Wednesday, February 29, 2012, 5:14pm Report to Moderator Report to Moderator

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Thanks, PC. Still rather confusing....
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Spring
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Quoted from Jane
San J,
Glad you are feeling better.  What a scare!

Oddly enough, I had some pain yesterday in what I think was my left bronchial tubes.  I went home and took some Elderberry Syrup with Honey (Apitherapy) and feel better today.  I hope that it was the right thing to do. Yesterday it was bothering me so much that I almost went to the Dr. but was so busy at work that I didn't.  I haven't had any problems breathing but I've had a terrible time with sinus issues....not enough that I feel like I need to constantly use the neti pot but just enough to feel like there's just a little drip there.  I think I may be eating too many eggs.  As a kid, I was allergic to the whites but I eat organic ones frequently now.  
Think I'll have another cup of green tea....Jane


Jane, I'm sure your entire system has not gone into super overdrive to combat a bronchial problem that is not life threatening. "Storm" isn't added to this description for nothing. It is a situation where the body is in the extreme of extremities! In other words, fighting desperately for its life. So taking elderberry in that type extremity would only aid the bad situation. Thankfully, there are many, many more things we could use to combat the "storm!" I have printed out all this info and highlighted all the pertinent information and hope that I or anyone I know ever has to use it!!!!!  


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Spring
Wednesday, February 29, 2012, 5:31pm Report to Moderator Report to Moderator

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Another thing, it would be great if Dr. D. chose to enlighten us even further about what to do in this type crisis! I mean in terms that we can easily understand! Which he is so good at doing.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Jane
Wednesday, February 29, 2012, 5:34pm Report to Moderator Report to Moderator

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Thanks Spring.  I wasn't equating some discomfort with what San J went through....just wondering if I took the right stuff for what I had.  It's been bothering me for a while but yesterday it really hurt.  Took some Proberry caps in the morning and the liquid stuff when I got home and it's definitely better today but still there.  
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Spring
Wednesday, February 29, 2012, 5:56pm Report to Moderator Report to Moderator

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Quoted from Jane
Thanks Spring.  I wasn't equating some discomfort with what San J went through....just wondering if I took the right stuff for what I had.  It's been bothering me for a while but yesterday it really hurt.  Took some Proberry caps in the morning and the liquid stuff when I got home and it's definitely better today but still there.  


I know, Jane. The thought never entered my mind. Unless I get really, really sick with something, elderberry is the first thing I grab!! Golden seal comes next if the elderberry doesn't handle it fast enough.  Ashwagandha and astragalus get thrown in, too, if things don't get better pretty soon! Along with the normal remedies of drinking lots of liquids, etc. Glad you are feeling better. Sometimes those things can linger forever, though, it seems. I had something like that earlier in the fall and was afraid I was going to eventually have to take an antibiotic, but I managed to escape that. I thank SWAMI!!! I do not like being sick with anything!! At all!!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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san j
Wednesday, February 29, 2012, 6:15pm Report to Moderator Report to Moderator

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Quoted from Spring


Jane, I'm sure your entire system has not gone into super overdrive to combat a bronchial problem that is not life threatening. "Storm" isn't added to this description for nothing. It is a situation where the body is in the extreme of extremities! In other words, fighting desperately for its life. So taking elderberry in that type extremity would only aid the bad situation. Thankfully, there are many, many more things we could use to combat the "storm!" I have printed out all this info and highlighted all the pertinent information and hope that I or anyone I know ever has to use it!!!!!  


Yes, Spring, that's right.
The "Storm" really began, according to the pulmonologist, after I was in the hospital. I was admitted through the ER to a regular patient room "for observation", after the ER chest Xray showed pneumonia in one lobe. And I was very sick already, believe me, coughing and vomiting. But over the two days, my oxygen saturation was only deteriorating, and the capacity of a regular ward to furnish me with the vast amount of outside oxygen I needed was exhausted: So I was assigned to the ICU, where the life-death struggle really took place. This is where the Cytokine Storm, flooding my lungs with fluid precisely when they needed to be drained and dried-out, occurred. The pulmonologist later explained that the cytokines were rendering my blood vessels hyperpermeable. You want that permeability for the transport of fluid AWAY from the lungs, but by this point all lobes of both lungs had pneumonia.

Know that the overall health / immune-strength of the typical victim of Cytokine Storm is extremely good/strong/hardy. (And apparently I am MUCH older than that typical patient!) From what I have gathered so far, too, the Critical Care team decided to use my natural strength against the excessive immune reaction and, in conjunction with Killer Antibiotics, yes, did permit my own body to gain in strength to fight off the overreaction. Obviously they made some very good decisions in the heat of battle; the lethality of Cytokine Storm is proverbial in Medicine, and here I am on my own bed, tap-tap-tapping on my laptop!

So, yes, Spring and Jane: By the time the Storm hits, the patient is probably no longer in position to be playing with elderberry cap decisions at home. It hit me when I'd been ill over a week and in hospital a day or so.



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Dianne
Wednesday, February 29, 2012, 6:38pm Report to Moderator Report to Moderator

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Thank goodness that you are fine and that you got yourself to a hospital. I think you are the one who started a thread about the strange viruses/sicknesses going on since last year.
While I've been quite sick myself with a virus for several months, nothing as serious as your condition. I'm taking this thread very seriously though to be on the lookout as these viruses/bacteria are potent.  
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san j
Wednesday, February 29, 2012, 6:55pm Report to Moderator Report to Moderator

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Thank you, everyone, for your kind well-wishes.  
And thank you, C_sharp and ABJoe, for the links!  


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Jane
Wednesday, February 29, 2012, 8:01pm Report to Moderator Report to Moderator

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How scary that must have been and how fantastic is it that you had the strength to beat it!
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Spring
Wednesday, February 29, 2012, 9:22pm Report to Moderator Report to Moderator

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Quoted Text
So, yes, Spring and Jane: By the time the Storm hits, the patient is probably no longer in position to be playing with elderberry cap decisions at home. It hit me when I'd been ill over a week and in hospital a day or so


This is the very reason I printed this stuff out - so my family can be aware of such an awful thing that can happen to our very healthy bodies! I am so glad that the people helping you knew how to do what needed to be done. Who would have ever thought that getting slammed with a "killer antibiotic" would actually be the only thing that could have saved your life?! In another situation it might have earned its name. One of my sons was nearly overcome with pneumonia in just a few hours when he as 16. We thought, and he did too, that he had a virus because he was nauseated, but felt fine otherwise and was normally healthy as a horse. Suddenly, around midnight his fever started shooting up, so we jumped in the car and took off to the ER. (Which was about five minutes away.) We had to practically drag him out of here because he kept saying he felt fine!   By the time we got to the desk, he was turning purple. A male nurse happened to look out and saw his color and started waving frantically for him to come on back. After signing him in we went back and the nurse was checking his reflexes. (There were several cases of spinal meningitis in town at the time.) I told him it wasn't that because I had been checking his reflexes and neck every fifteen minutes. They did an x-ray and found both lungs nearly full. Of course, they were rushing around like crazy doing all this. They immediately gave him a shot of a VERY strong antibiotic. I must have been crazy but later I talked them into letting us bring him home because we were going to sit up with him the rest of the night. In a very short time, his breathing became normal, his normal color returned and his fever went down. The next day his regular doctor nearly had a stroke when he found out we had brought him home after he saw the x-rays. If our son had been having any fever at all, he would have sent him straight back to the hospital. Anyway, that time everything turned out all right, but we wouldn't risk something like that now for anything! Never!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Goldie
Wednesday, February 29, 2012, 9:36pm Report to Moderator Report to Moderator

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at least you are here to tell the tale.. all the best


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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san j
Wednesday, February 29, 2012, 10:26pm Report to Moderator Report to Moderator

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Quoted from Jane
How scary that must have been and how fantastic is it that you had the strength to beat it!


When you have the strength, you may not know you are having the strength. You may, in fact, be weak to the point of unconsciousness, but your body's various systems are doing whatever it is they were designed to do, just because they're programmed that way. Kin'a nifty, no?

Over half a century of good health was already packed into my l'il frame. For whatever reason, it didn't give out. If I were someone else, my number might have been up...So many variables.

Anyway, here I am, doing the really hard part: Recovering at home. I assure you, this is really daunting. After a strenuous first week, I had a couple of increasingly strong, upswinging days. Now I've kind of crashed. I take nothing for granted. Thanks for prayers, etc.

And if you have cool links, always welcome.



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Dianne
Wednesday, February 29, 2012, 10:53pm Report to Moderator Report to Moderator

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Quoted from san j


And if you have cool links, always welcome.



SanJ et all - You know how they say that laughter is the best medicine, go on you tube and surf for funny videos. Bill Cosby has some funny ones - type - Bill Cosby Bifocals.  
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Lola
Thursday, March 1, 2012, 5:41am Report to Moderator Report to Moderator

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''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
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The harder you are on yourself, the easier life will be on you!
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Dianne
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OMG Lola, this is absolutely hilarious! Loved it!
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Spring
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Quoted from Lola


Yummmmmm!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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san j
Thursday, March 1, 2012, 6:03pm Report to Moderator Report to Moderator

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I haven't watched it (yet) but I actually do have a "Just Desserts" chocolate cake in the house -- very uncharacteristic and unusual -- that I'm having trouble consuming.

Appetite had been returning, but then disappeared...

Thanks, Lola. Maybe later I'll watch?


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cajun
Friday, March 2, 2012, 12:01am Report to Moderator Report to Moderator

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Oh mon Dieu!
I am so sorry you had to go through that, San j!  
Prayers will continue for your return to "sante"...
Feel better soon, amie!  


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Spring
Friday, March 2, 2012, 4:17am Report to Moderator Report to Moderator

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San J, you need to keep us posted on how you are doing. Hope your recovery is going well.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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RedLilac
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I’m so sorry to hear that you had to go through this but glad you are doing better now.  


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san j
Tuesday, March 6, 2012, 12:55am Report to Moderator Report to Moderator

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Just posted this elsewhere, but I realize I should share it here:

Anemia is a typical, expected complication of the cytokine storm (also called Cytokine Release Syndrome, especially - but not necessarily - when not of "storm" proportions). Cytokines mess with the erythropoietic process and/or are destructive of more mature erythrocytes. When I was in hospital, the doctors prescribed an iron tablet every day.

Convalescing at home, I'm quite exhausted, so I've added iron p.o. to my program, and I think it's a good idea to continue it for quite some time hereafter, from what I read. Sorry no MD told me about this, but the literature is clear: Cytokine storm takes its toll on the iron level.


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Possum
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Does B12 help with iron absorption too? It seemed to help with mine... All the best!!
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san j
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Just came across this in my travels, for those asking about elderberry and cytokines...

http://www.survivalblog.com/2009/04/letter_re_sambucol_and_the_cyt.html


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san j
Wednesday, March 21, 2012, 4:55am Report to Moderator Report to Moderator

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Funny insurance story:

The insurance carrier sent me a letter about a certain claim they received from the Intensivist medical group (pulmonologists in the ICU) on my behalf.
The carrier is questioning whether or not the Diagnosis on this claim is actually a "Pre-existing Condition", i.e., did I have this medical condition before coverage began in 2011.

The claim was for ICU Induction: The 30-74 minute period when a patient is admitted to the ICU from either another ward (in my case) or the ER. During those crucial minutes, the patient is typically in a life-death struggle, and the doctors and nurses must rally quickly to hook him/her up to the various life support and monitoring apparati on hand.

Here is the diagnosis the insurance company is wondering about as a condition existing for months:

"Acute Respiratory Failure".



Go figure!


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Spring
Wednesday, March 21, 2012, 5:09am Report to Moderator Report to Moderator

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They need some new people!! These are plain stupid!


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PrincessMia
Wednesday, March 21, 2012, 12:37pm Report to Moderator Report to Moderator

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Glad you made it through this terrible ordeal sanj. Thank you for sharing. I have never heard of this before. When I was laid up in bed not so long ago, I am now wondering if it had something to do with elderberry. I have not been sick like that in years. I just happened to be taking elderberry drops. Always learning something on this forum.


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san j
Wednesday, March 21, 2012, 9:36pm Report to Moderator Report to Moderator

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Quoted from PrincessMia
Glad you made it through this terrible ordeal sanj. Thank you for sharing. I have never heard of this before. When I was laid up in bed not so long ago, I am now wondering if it had something to do with elderberry. I have not been sick like that in years. I just happened to be taking elderberry drops. Always learning something on this forum.


Frankly, I have my doubts about that, PM.

The cytokine storm is part of a disease process with any number of origins/etiologies. It is a component in severe sepsis and Acute Respiratory Distress Syndrome (ARDS), for instance, as in my case. The initial insult to the lungs (or other organ) is - according to NONE of the lists I've seen, on the internet medical sites or in medical texts - eating the wrong variety of berry. I don't know about your underlying conditions, but there are some serious medical conditions that may predispose to sepsis and/or hyperimmune response. If this concerns you, it bears more rigorous study than merely reading anecdotal accounts on this Forum.

For those of you who may now be hypervigilant about elderberry/cytokines, NOTE:

The point in the disease process at which the Cytokine Release Syndrome becomes apparent is usually well after the patient has become very sick. As in my case, most sepsis begins when the patient is already in the hospital. I was an Emergency Room admission to a regular ward with a diagnosis of pneumonia for two days before my condition became critically acute and the anti-inflammatory process went haywire. So don't get scared when you have mere colds and flu, okay?



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Dr. D
Wednesday, March 21, 2012, 11:12pm Report to Moderator Report to Moderator

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Wednesday, March 21, 2012, 11:33pm Report to Moderator Report to Moderator

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san j
Thursday, March 22, 2012, 12:13am Report to Moderator Report to Moderator

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Yes - thanks Dr. D. I'd been thinking about that, and your post sent me on a little research journey. Taking large doses of D3 at the first sign of influenza is recommended by some, to head off the sort of problem I had. (Though in my case, the ER influenza test came back negative - I didn't have the flu.) Nonetheless, this is an exciting line of enquiry in Medicine, and one I'd never pursued before.

Here's something interesting on Vitamin D/Sunlight and the seasonality of influenza epidemics.
http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=529704

As for me, I've been taking D3 2,000IU, but I shall increase the dose.


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Andrea AWsec
Thursday, March 22, 2012, 12:29am Report to Moderator Report to Moderator

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Rapid flu tests done in hospitals are not accurate false negatives are common. We keep patients on isolation even if the screen is negative for 4 days.


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san j
Thursday, March 22, 2012, 1:15am Report to Moderator Report to Moderator

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Quoted from Andrea AWsec
Rapid flu tests done in hospitals are not accurate false negatives are common. We keep patients on isolation even if the screen is negative for 4 days.


Y'know, I was thinking that right after I posted. Thanks for mentioning it!  
Because even after it came back negative, the med. team was unwilling to entirely rule it out.

In any case, the symptoms leading up to the ER exam were themselves atypical -- very distinct from any flu I've ever had, over the 50+ years of my lifespan. I personally never thought what I had was the flu, though friends would assume it's why I was home with a cough.

Also: It seems to be generally agreed that Vitamin D deficiency causes not only this catastrophic sort of inflammatory response to viruses such as flu, but also increased susceptibility to viruses/bacteria in general. People that low in Vitamin D stores tend to catch flu whenever there's an epidemic, and to suffer from frequent colds and infections. I, on the other hand, have been particularly hardy in that regard, escaping colds and flu year after year, never having had a flu shot in my life.

So - if this WAS flu, it was unusual for me, but a Whopper!
Thanks for your input.
What a fascinating field.




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ruthiegirl
Thursday, March 22, 2012, 12:51pm Report to Moderator Report to Moderator

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It's not so much about the dose you're taking orally; it's about the blood levels of vitamin D. I was taking 4,000 iu daily when a blood test confirmed low vitamin D; either I wasn't absorbing the vitamin well, or my body used it up too fast. Upping my dose (10,000 iu for a while, with frequent lab tests to monitor my levels) brought it up within a few months.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  13yo B+ Jack


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san j
Monday, March 26, 2012, 11:47pm Report to Moderator Report to Moderator

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Quoted from ruthiegirl
It's not so much about the dose you're taking orally; it's about the blood levels of vitamin D. I was taking 4,000 iu daily when a blood test confirmed low vitamin D; either I wasn't absorbing the vitamin well, or my body used it up too fast. Upping my dose (10,000 iu for a while, with frequent lab tests to monitor my levels) brought it up within a few months.


I don't know if Research continues along these lines, but a number of years ago (5 or so?) the D2 vs. D3 issue was being studied, positing that D2 is the stored form of Vitamin D, and that D3 is the circulating form. It was being recommended that large doses of D3 be taken to tackle an acute infection, for instance, but that D2 be taken to replenish diminished stores, i.e., remedy an outright deficiency.

Surf around if this interests you.  



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