Vents are not a treatment, they are support. Treatment would either slow replication or lower the inflammation.
But I like your thinking.
Vents are not a treatment, they are support. Treatment would either slow replication or lower the inflammation.
But I like your thinking.
So, say, twenty percent of the problem is pneumonia and you can see gains by addressing that, but it's just one piece.
Lowering demand on the system would help accommodate the low oxygen. One way the body does this is by sleeping. People are reporting they are sleeping a lot.
Anyway, zinc makes sense based on stuff I'm aware of. And it's cheap and the body apparently doesn't store it. You need a daily supply.
So if zinc is a critical factor, dietary differences could be a significant detail. People sucking down sufficient zinc keep breathing. People not eating zinc-rich foods suffocate.
Does anyone know what Coronavirus does with regards to zinc usage in the body?
My focus more on nutritional genetics and biochemistry so I am trying to put something I know well with something I can maybe understand. This is why I reached out here.
I was just happy to have a better label than "hypochondriac" and was responding well to treatment and was fighting for my life. I shrugged and thought nothing of it, but that detail undermines my credibility in the CF community. (I mean the fact that I don't know my alleles.)
I was diagnosed nearly 19 years ago and I have been steadily getting better using dietary and lifestyle interventions. I know a lot about things like inflammation in the lungs and how to manage it.
At this point, I most likely have the infection and have had it for a while, though that only recently became clear to me because I'm largely asymptomatic.
The most prominent symptom I do have is that my energy levels are low in a way that suggests a bottleneck in the system on energy supply. Impaired oxygen availability would fit with what I'm experiencing.
I have a history of anemia and it is somewhat similar to that.
My lungs are clearer than they have been in weeks. I had a mold exposure earlier this year and spent weeks coughing up a lot of phlegm multiple times per day.
At the moment and in the last couple of weeks, my lungs aren't all gunked up and my chronic inflammation is currently very well controlled.
But we are all three (me and my sons, one of whom also has atypical CF) sucking down zinc-rich foods. And we feel notably better after eating.
So your remarks hit a nerve for me.
I'm not suggesting it's the entire answer. But CF is, itself, a bottleneck in the system at the cellular level. The mechanism causing the condition is a defective channel that handles traffic of certain molecules into and out of the cell.
That's what is known by medical science and it has been enormously helpful information for me. Beyond that, my mental models for what is going on with my body depart from current medical dogma and I get attacked and dismissed a lot as a loon because I'm a former homemaker, not a doctor.
But I'm extremely familiar with what it feels like to have a bottleneck in the system and this feels to me like a bottleneck in the system somewhere. And it's not lung function per se. I'm not having any breathing difficulties at all.
This is why I think Coronavirus is impairing oxygen uptake somehow in terms of some biochemical pathway.
I work from home, part time and when I feel like it. I'm poor, but I have a lot of control over my schedule.
My sons and I are lazing about a lot and struggling to come up with the energy to take care of what few tasks must be done daily. But with pollution levels down and no pressure to perform, we are managing to not end up in serious crisis. We just aren't pushing ourselves.
With a bottleneck in the system, you can't readily recover from stress events. You don't have the capacity.
For normal people who are used to being able to push themselves to do something when they don't feel well, a bottleneck in the system would create a potentially deadly problem where pushing themselves could be a cataclysmic event from which they cannot recover.
If there is a bottleneck, you have to slow down, take it easy, don't push. You have to take pressure off the system by lowering demand.
You have to max out support of all other areas that might impinge on the system in a way that would further narrow the bottleneck. I'm still doing lung clearance multiple times per day. I'm not bringing up much, but I'm keeping my lungs clear of obstruction because any obstruction further narrows the bottleneck.
So other things, like fluid in the lungs or inflammation, would further narrow the bottleneck. But clearing those additional burdens on the system doesn't, per se, fix the problem. It just lets the body get as much throughput through the bottleneck as possible.
My impression currently is that zinc consumption is easing the bottleneck itself. It's opening up capacity modestly, though it's certainly not a cure. It's just a means to keep energy levels up enough to not be a dire problem.
Please, if you can think of or learn of anything in terms of how Coronavirus impacts cell function that may cast light on interference with oxygen uptake at the biological pathway level (as opposed to mechanically in the lungs, which is what ventilators are trying to address and failing), shoot me an email. My email is in my profile.
There of many people with common disease living on on the nature----nurture spectrum. But the nurture part is largely overlooked in the PRACTICE of medicine. MD's have admitted to me that it is just easier to not focus on it.
Back to Coronavirus, it might be that the zinc is not as available to replace the iron in the Porphyrin ring.
https://en.wikipedia.org/wiki/Zinc_protoporphyrin
I am not yet ready to see the low blood oxygen as totally bad. We used to think fevers were totally bad. It might be a way the body fights coronavirus. See:
https://aac.asm.org/content/61/6/e00053-17.short
I will send you an email as well.
Ventilators may be the wrong treatment because the low oxygen levels may be largely due to a process more like anemia rather than primarily due to lung issues. You don't treat anemia by putting people on ventilators.
We can't successfully treat people if our mental models of the problem are entirely wrong.
Current thinking is that CF is relatively common in some populations because it is protective against certain conditions and those conditions swept through Europe a lot for a while. CF is predominantly Caucasian and it's homozygous recessive.
So the current belief is that it's sort of like Sickle Cell Anemia. One copy of the gene improves survival against certain infections without being an egregious burden to live with. Two copies are a terrible problem that kill you at an early age.
About 18 years ago, not long after me and my older son were diagnosed with CF, my younger son -- who is only a carrier -- had Winter Vomiting. It was a very deadly stomach flu.
He spent eight days miserable and barely eating. I told him if he got dehydrated, I was taking him to the ER to get an IV. He had an IV once and didn't want it again. So once a day, he drank 32 ounces of water, had a few crackers or ramen and then immediately projectile vomited it all back up. But it kept him from ending up dehydrated.
Me and my oldest son felt kind of meh for like maybe a day and a half. Our gut doesn't work right. This stomach flu didn't thrive in our system.
So I am abundantly familiar with the concept you are talking. What you are saying is like that X Files scene where she says "The cold is the only thing keeping him alive." when they are trying to treat him for hypothermia.
But ventilators are apparently killing people and apparently not primarily due to antibiotic resistant secondary infection. This is a clue. We need to follow the clues and see where they take us.
The lung issues are the obvious explanation for low oxygen, but treating for lung issues isn't getting the expected result. Ergo the low oxygen most likely is due to a different mechanism. Logically, it's a mechanism more akin to anemia, which is basically a bottleneck on how much oxygen the body can absorb at one time.
That's where we need to look, I think.
I am wondering about how NOS enzymes (like NOS2) might play a role since they are expressed at high altitudes and COVID is looking a lot like high altitude sickness by one doctor in NYC.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3295887/
I am thinking myself that some people with poor NOS genetics or poor nutrition will have this issue. The result of higher need for NOS2 will lead to polycythemia and to improved oxygen delivery to tissue when accompanied by increased blood volume.
This image might explain a lot:
https://journals.plos.org/plosone/article/figure/image?id=10...
I have such a strong intuition that ACE2 inhibition or destruction is an important issue with COVID.
https://www.healthline.com/nutrition/how-to-increase-nitric-...
https://www.medicalnewstoday.com/articles/326381#benefits
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2953417/
https://www.nutrex.com/articles/benefits-of-nitric-oxide-boo...
https://www.ausfp.com/medical-procedures-services/nitric-oxi...
(Yes, I'm aware the last two are trying to sell you something and are probably skeevy.)
So, some general off-the-cuff thoughts:
Glutathione is a big deal with CF. There is too little on the surface of cells and too much inside the cells.
Some people with CF report good results from inhaling NAC (iirc) tro promote glutathione on the surface of the lungs.
I think people with CF have too much inside their cells because we hoard it, along with calcium, to buffer against high acidity and other chemical derangement. As I have been getting healthier, I periodically experience what I think is glutathione dumping. My armpits and bowel movements smell strongly sour, similar to a skunk, and then my baseline function permanently improves afterwards.
I took milk thistle for a while, maybe a couple of years or something. It's a glutathione precursor. You can't supplement glutathione directly. You have to take precursors so the body can manufacture it.
I did it in part as liver support. Glutathione is important to liver function which is important to cleaning the blood. I spent a whole lot of time worried about my circulatory health as that seems to be the key that pulls everything together.
I read up on altitude sickness at one time and it was hugely eye opening. The mechanism involved provides a clear connection between the lung and gut issues in CF via the bloodstream.
I lived at 3000 feet above sea level for 2.75 years. My rib cage size enlarged and has remained enlarged ever since (as evidence by changes in the band size of my bras). I likely had underdeveloped lungs.
From there, I moved to about 100 feet above sea level and was soon bedridden due to pneumonia and this led to my diagnosis just before I turned to 36. It is known that people who live at altitude and then go down in altitude experience a big boost in energy levels. I likely survived being bedridden from pneumonia in part because of my recent time at altitude.
I'm wondering if you know of any research into long-term effects of NO production for having lived at altitude for a time.
I'm thinking my more normal distribution of glutathione these days may be a factor in why I have been largely asymptomatic, in spite of being in a high risk category.
One of those articles indicates that NO deficiency also inhibits glucose and/or NO enhances glucose uptake. This would also lower energy levels.
My impression of what I am experiencing absolutely fits with the idea that poor vasodilation in the lungs, and thus poor trafficking of oxygen into the blood stream, could explain the low oxygen levels, at least in part.
I don't know how to describe it, but I feel like, yes, my lungs are cut off in some way from my body, in spite of not being full of fluid. I breathe fine, but I sometimes feel like my airways aren't really doing their job in some important way. I feel like the tissues are "closed" in some sense, in spite of not being gunked up and covered over.
Insufficient vasodilation impairing oxygen uptake fits with that impression.
I think that's all I had in mind to say.
Edit: I have just spoken with my son (who also has atypical CF) about this discussion and he says lack of vasodilation -- and oxygen thus failing to cross adequately into the blood stream -- also fits with what he is experiencing. None of us has an active cough. We are mostly just really tired.
https://www.sciencedirect.com/science/article/pii/S000292971...
And there is a clear link to low NO and CF
https://www.cysticfibrosisjournal.com/article/S1569-1993(05)...
It seems the issue with CF is NOS1. (I have an issue with NOS2)
https://www.atsjournals.org/doi/full/10.1164/ajrccm.162.6.20...
Look at the cofactors that help NOS1 function and that might give you some clues at what may help:
https://www.uniprot.org/uniprot/P29475
Glutathione will help protect against both BH4 depletion as well as forming peryoxinitires.
You intuitions are excellent.
I have your email. We can continue discussion there.
Just as a pedantic note, I said above:
I lived at 3000 feet above sea level for 2.75 years.
I think that's wrong. I think it was more like 2 years, 5 months.