Feel like Oxygen not getting into my cells/brain/body

[mellster]

Hi Rydra,

I think the air-hunger cannot be explained with an anemic state although you are right about quite a few patients having anemic conditions. The air-hunger often comes and goes rapidly whereas anemia is more of a consistent state and changes happen more slowly. The air-hunger has been explained with mitochondrial dysfunction as well (Alex would know how to explain this further), i.e. maloxygenation at the cellular level, and sometimes simply with respiratory issues. For me it's not constant and it has gotten much better, but I always had days where I could exercise/exert strenuously and do lots of stuff and then days with air-hunger where everything seemed like a chore. Making sure you have enough red blood cells, hemoglobin and ferritin is always a good thing though cheers

 

[rydra_wong]

Hi Rydra,

I think the air-hunger cannot be explained with an anemic state although you are right about quite a few patients having anemic conditions. The air-hunger often comes and goes rapidly whereas anemia is more of a consistent state and changes happen more slowly. The air-hunger has been explained with mitochondrial dysfunction as well (Alex would know how to explain this further), i.e. maloxygenation at the cellular level, and sometimes simply with respiratory issues. For me it's not constant and it has gotten much better, but I always had days where I could exercise/exert strenuously and do lots of stuff and then days with air-hunger where everything seemed like a chore. Making sure you have enough red blood cells, hemoglobin and ferritin is always a good thing though cheers

Well I am not a doctor but I still question this. There is such a thing a copper deficient anemia and I suspect, like iron deficient anemia, there are stages of it that are not obvious to the medical community. (For example if your ferritin is above 25 the medical community does not care, but yet you are anemic!). I think lack of copper affects your blood cell volume (not sure) but I seriously doubt medical science actually knows what the boundary of that should be for sufficient copper absorption (maybe they can tell if it is severe, but I'll bet they cannot otherise tell -- and here's why-! The reason is that they do not know how much copper the human body needs - they do not know how to measure copper status and thereby determine how much copper is contained by healthy people vs. those in various disease states. The only way they agree works is via liver biopsy (invasive and so impractical)). I would still be looking at the list of deficiencies that can cause anemia and play with them expecting to get results. But that is just me.

If you do really think air hunger has to do with mitochondrial dysfunction and nothing to do with anemia then in addition to the methylation protocol of choice I would consider PQQ. The new thing to regenerate mitochondria. If you can't get your methyl cycle to work (I would not give up on this) but Velha over at the other site bypassed her methyl cycle with a very high dose of carnitine. (I do not know the dose - but quite a few pills/day -- at least 5). Of course she stuck with Fredd's protocol to get her methylation as good as she could. She said it gave her energ to play with her kids again. I thought she posted over here too - maybe search for Velha. In any event, keep the faith!

 

[heapsreal]

Many causes of shortness of breath especially if u have pots/OI/postural hypotension issues, anything that may cause a lack of oxygenation to the brain can cause this. Also cardiac problems, especially dr lerners theory on herpes viruses causing cardiac dysfunction, this could also be a cause of 'air hunger'. Things u have to look at are the airways and lungs themselves, oxygen exchange from lungs to the haemoglobin and then from the haemoglobin to the tissues/cells(more related to anemia side of things) as well as the pump(heart) thats moving all the oxygen around the body and the blood vessels that contain them. A few people here who have EDS have pots/oi issues worsened from the over elasticity of their blood vessels, this can also cause shortness of breath.

Mell i think its a cool thing your doing with the altitude type therapy you are using, i think it can be beneficial to anyone, good luck with it dude.

cheers!!!

 

[rydra_wong]

It's probably due to low production of Anti-Diuretic Hormone, which requires cysteine. A cysteine deficiency is a likely cause or side-effect of many cases of ME/CFS. Without enough ADH, the body dumps more fluids than it should.

Although fluids, potassium, and sodium might help to keep the problem from becoming horrific, they don't solve the problem. Transfusions or IV fluids can also be helpful, but the body only holds onto the "extra" fluids for a short time (days?) before ADH levels signal the body to dump them.

This is why supplementing cysteine in various forms might help, since it allows more ADH to be formed. N-acetyl cysteine (NAC) is the one I take that seems to have helped.

This is interesting and a new one on me. I know I get enough cysteine as I eat cysteine rich foods every day and indeed gravitate toward them. I would like - stab you with a fork if you tried to steal my daily egg or my broccoli supplement, or even my garlic supplement! I also know other people who feel the same way about their daily eggs. I had my amino acids analyzed and only a couple things are out of range low and them only slightly (despite that I eat a low protein diet). (I need to look into how to get more BCAAs).

I never heard of an anti-diiuretic hormone? Has everyone else tried cysteine for low blood volume?

It sounds like a key piece of information you have shared here, how come everyone isn't jumping up and down?

 

[Valentijn]

This is interesting and a new one on me. I know I get enough cysteine as I eat cysteine rich foods every day and indeed gravitate toward them.

Cysteine is present in foods, but as a non-essential amino acid, the body can usually produce enough of it to meet its needs without relying on cysteine consumption. But there can be a problem with bionsynthesis of converting homocysteine into cysteine. I'm not sure how much cysteine can be absorbed from the diet, compared to what the body can make on its own, or relative to what is needed for normal functioning.

I never heard of an anti-diiuretic hormone? Has everyone else tried cysteine for low blood volume?
It sounds like a key piece of information you have shared here, how come everyone isn't jumping up and down?

It's name is Anti-Diuretic Hormone (ADH). Many people have tried many things, and for some it helps and for some it doesn't. The problem with ME/CFS is that there are multiple factors interacting in a manner that makes it difficult to make significant progress. For example, having depleted glutathione can have the side effect of a system draining glutathione directly to compensate for the inability to function normally as an indirect result of too little glutathione

Another self-perpetuating problem may arise from low cysteine levels resulting in high glutamate levels (because there's too little cysteine to form glutathione, leaving glutamate without enough cysteine to hook up with to create glutathione). And guess what high levels of glutamate do - they prevent cystine from entering cells, thereby preventing the cystine from turning into cysteine and forming glutathione. Or maybe the high glutamate levels come first somehow.

Either way, there's a perpetuating cycle of high glutamate and low cysteine, which might not be resolvable without lowering glutamate, raising cysteine, and removing any factor that is chronically draining glutathione.

 

[mellster]

Thanks heaps, the CVAC definitely makes a big difference, no doubt, in energy levels and FM pain reduction. Also maybe Rydra has a point and there are several hidden pseudo-anemic states, I don't know. My air hunger is almost entirely gone, but the aerobic issues are not and I don't expect short-term miracles in CFS recovery, but I wanted to point out that it does not feel like a shortness of breath issue, more like inefficient oxygenation, if that makes any sense. Pure aerobic exercise is still the beast for me and light jogging in the hills of SF feels harder than kickboxing, riding a bike a and whatever else we do to our bodies I am currently up to 15-20 minutes before I switch over to yoga/strength work and going the distance seems like a very tough nut to crack I know people often say 'I would be happy and close my case if I could get even that far' but I think it's beneficial to explore why we don't feel 'normal' or 'like we used to be' and there are people here that used to be way more athletic and run/bike for hours and cannot do that anymore, and identifying the issues will help every CFS patient, no matter what energy level they are at.

Many causes of shortness of breath especially if u have pots/OI/postural hypotension issues, anything that may cause a lack of oxygenation to the brain can cause this. Also cardiac problems, especially dr lerners theory on herpes viruses causing cardiac dysfunction, this could also be a cause of 'air hunger'. Things u have to look at are the airways and lungs themselves, oxygen exchange from lungs to the haemoglobin and then from the haemoglobin to the tissues/cells(more related to anemia side of things) as well as the pump(heart) thats moving all the oxygen around the body and the blood vessels that contain them. A few people here who have EDS have pots/oi issues worsened from the over elasticity of their blood vessels, this can also cause shortness of breath.

Mell i think its a cool thing your doing with the altitude type therapy you are using, i think it can be beneficial to anyone, good luck with it dude.

cheers!!!

 

[ahimsa]

Many people have tried many things, and for some it helps and for some it doesn't. The problem with ME/CFS is that there are multiple factors interacting in a manner that makes it difficult to make significant progress.

Valentijn, thanks so much for saying this. I quoted this bit because I thought it was worth repeating.

If fixing ME/CFS (or whatever name you want to use) was easy then everyone would recover and we wouldn't need this forum. Even patients with illnesses that are fairly well understood do not always respond to the standard treatment for that illness. So, it's no wonder that patients with ME/CFS have such a difficult time finding effective treatments.

 

[heapsreal]

Treatment for cfs is about trial and error and an educated guess with results from testing etc. If something helps abit, keep it in your arsenal and if something doesnt then disreguard, eventually u will have a few things in your arsenal that help and hopefully the sum of all these treatments helps alot more then individual treatments. Treating symptoms is important and can help stabilize our condition, especially helping sleep. We need to do alot of our own research as we are mostly our own doctors.

cheers!!!

 

[Sallysblooms]

True Heaps! I research a lot and talk to my doctor and I do well most of the time. Treating deficiencies, symptoms, getting sleep, all so important to stay strong.

 

[Pyrrhus]

Related discussion:

Treatment for shortness of breath?
https://forums.phoenixrising.me/threads/treatment-for-shortness-of-breath.81325/