jaminhealth, There was a time when I would have agreed with you to some degree. However time, and education due to ill-health, has altered my perspectives. I used to ensure that I had a large range of high nutritional superfoods which maintained high vitamin C, antioxidant, vitamin and mineral levels in my body. I avoided gluten, as I have severe intolerance to it. My health was amazing. What I didn't foresee was the company which employed me exposing me to toxic nanoparticle sprays without any protection. The entire glass industry does this, claiming that the sprays are completely safe. The same silica nanoparticles are being used in a multitude of industries and have begun to cause an epidemic of rapid progression disease in workers exposed to them. Workers exposed to normal causes of silicosis experience the issues at a slower rate because the nanoparticles are only on the outside of the dust which is inhaled; researchers now understand that it isn't the dust itself which causes the silicosis. With concentrated nanoparticle formulations themselves that toxicity rises in proportion. There are a range of conditions which vitamin C and grape seed extract just don't cut it in dealing with. I found this article, about a specific potential danger of high dose vitamin C, very interesting; https://www.fattyliverfoundation.org/linus_pauling Hope that you find it useful.
Almost crippling breathing problems?
- Thread starter David Tyrer
- Start date
Sorry, I find this article with nothing than wild speculations really irrelevant.
I started Pauling therapy, along with life-style changes and herbs 13 years ago due to a walking-disability from PAD. Took in that time in average 25 g per day of ascorbic acid.
Not only did I experience remission from that, but multiple comorbities. Like COPD, T2D, CKD stage 1.. also 20 years ago had a NAFLD fatty liver from 7 malarias and their treatment, and before starting to supplement still non-circulated nodules in the liver found by sonography. Also gone since long.
Further disappered: a tubercle in my lung, a cystitis, an increased size of spleen and thyroid. An MRI found even an cerebelium infact (1.5-3cm), I didn't even mention. For the last 8 years (before covid) I always went in the deepest winter on a South Indian beach for 6 weeks. From the first day on always 4 hours/day full body tropical sun-exposure. Not once sun-burned (without suncream).
With no other nutrient one might miss important and undefined benefits, if one doesn't increase the dose up to bowel-tolerance, and then stay below that forever. No ill effects. Not even worsened teeth due its acidity.
The main condition (PAD) took time for remission (7 years) though. Constant PEMs disappeared only after 10 years.
And really no toxicity not alleviated with vitamin C, if only high enough dosed.
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pammoja, Please forgive me. I am so accustomed to researching my own condition by investigating such speculations that I often forget that most people's minds don't work in a similar manner to my own. Again, I admit that high dose vitamin C and high quality flavonoids and pycnogenols are usually very healthy, and I plan to include them in my own treatment once I have dealt with the legal issues involved in my case and have my GP's permission to commence reversing my condition. I am only saying that not all treatments are advisable in every circumstance. Here are several properly researched examples involving known vitamin C induced health issues. https://pubmed.ncbi.nlm.nih.gov/18714631/ https://pubmed.ncbi.nlm.nih.gov/31748360/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2235877/ In order to convince my own physicians that I can use diet and supplements to improve my own severe condition I have been forced to dig through masses of medical research in order to demonstrate how each supplement or food relates to both my plan and the disease. While choosing one or two supplements to use to reverse a condition may sound very simple it provides no guarantee's and I have learnt that it pays to know the entire disease process as well as understanding how dietary inclusions can affect the specific ion channels, bone morphogenetic proteins, genetic factors, etc, in order to prove my case to anyone who questions it.
All with comorbities to sufficiently explain the failures: 1. Refused dialysis, 2. pancreatic insuficiency, 3. multple comorbitities.
'Properly reseached' means to you association proves causation?
Holy moses, you don't seem desperate enough. Why would I want to prove it to anyone, who questions my remissions?
For me only counts: having rid myself of disabilties most docs predicted nothing could ever be done against, and I should rather learn to life and accept early death from it all. I don't even go back to such ignorant docs. Against their predictions I'm now able to earn my lifelyhood and pursue more than just regaining my health. They though impossible from the outset anyway.
You need permission from your GP for reversing your condition?!? You'll never get. It's his business model and stream of income.
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Unfortunately my case isn't that simple. When my health collapsed, after the toxic work exposures, psychiatrists misdiagnosed my condition and, when they couldn't fix the problem as they had claimed they could, chose to accuse me of faking my condition in order to claim compensation. This basically turned me into a convicted criminal overnight with absolutely no clinical investigations ever performed. They just guessed what was happening and I was convicted on the basis of that guess. If I get better then they will simply use that as evidence that they were right and will pursue me again in further destroying my reputation. I've worked hard all of my life and have always taken pride in my work ethic. To have this questioned by a small group of doctors who don't even respect the use of medical investigations before diagnosing what is wrong with a patient just maddens me. Local police have told me that these psychiatrists have been destroying our neighbourhood by denying patients appropriate investigations and treatment, asking me to do my best to publicly expose what they have been doing.
Given the large amount of damage which resulted, first from the toxic work exposures and secondly from having medical professionals refuse to investigate or treat the damage, even the best diet will never restore my level of health prior to the exposures. I lost almost everything when the psychiatrists denied me compensation or support, simply leaving me to die in my home. It took my brother a while to realise that I was really so sick that I was likely to die and that the entire medical community was prepared to let this happen. Even the banks bent over backwards to try to help me, recognising that there really was something wrong but the local hospitals and doctors were just too proud to even consider reassessing their opinions. I had a number of doctors who also recognised that the system had messed up but our local medical/legal system relies upon the hospitals opinions and not those of other physicians so there was nothing they could do. My current GP actually had to spend weeks fighting them to get them to even consider assessing his finding that I have a form of autoimmune myopathy. From the time that he first referred me it took a year and a half before I even got to see one of them.
I do agree with you about how easy it is, under normal circumstances, to recover from many disease states. However bureaucrats sometimes trap us so that we have no choice but to wait. As for my GP, he has actually been pretty good with my plan to use diet and supplementation to reverse my condition. Even the hospital rheumatologist changed her mind about immunosuppression when I pointed out to her that my autoimmune condition is caused by respiratory failure. It seemed to shift her perception of exactly how much I knew about the science involved in my case. The hospitals kidney specialist also acknowledged the depth of research I presented her, stating that my conclusions regarding lowering oxalate levels using diet was as effective a plan as any that their doctors could guess might work. When I detailed the nature of the silica nanoparticles which I was exposed to, linking them to a recent epidemic of rapid progression silicosis in artificial stone workers, they really started to pay attention. Fortunately, some doctors are still traditional in wanting to help their patients and, at least recently, I have been quite lucky with mine. I acknowledge what you are saying though; most doctors are in the business of selling drugs to patients. A local doctor in my area actually wrote a book about how disillusioned he was when he realised that this was the case. I was just lucky that another doctor referred me to my current GP because he's not like that.
Given the large amount of damage which resulted, first from the toxic work exposures and secondly from having medical professionals refuse to investigate or treat the damage, even the best diet will never restore my level of health prior to the exposures. I lost almost everything when the psychiatrists denied me compensation or support, simply leaving me to die in my home. It took my brother a while to realise that I was really so sick that I was likely to die and that the entire medical community was prepared to let this happen. Even the banks bent over backwards to try to help me, recognising that there really was something wrong but the local hospitals and doctors were just too proud to even consider reassessing their opinions. I had a number of doctors who also recognised that the system had messed up but our local medical/legal system relies upon the hospitals opinions and not those of other physicians so there was nothing they could do. My current GP actually had to spend weeks fighting them to get them to even consider assessing his finding that I have a form of autoimmune myopathy. From the time that he first referred me it took a year and a half before I even got to see one of them.
I do agree with you about how easy it is, under normal circumstances, to recover from many disease states. However bureaucrats sometimes trap us so that we have no choice but to wait. As for my GP, he has actually been pretty good with my plan to use diet and supplementation to reverse my condition. Even the hospital rheumatologist changed her mind about immunosuppression when I pointed out to her that my autoimmune condition is caused by respiratory failure. It seemed to shift her perception of exactly how much I knew about the science involved in my case. The hospitals kidney specialist also acknowledged the depth of research I presented her, stating that my conclusions regarding lowering oxalate levels using diet was as effective a plan as any that their doctors could guess might work. When I detailed the nature of the silica nanoparticles which I was exposed to, linking them to a recent epidemic of rapid progression silicosis in artificial stone workers, they really started to pay attention. Fortunately, some doctors are still traditional in wanting to help their patients and, at least recently, I have been quite lucky with mine. I acknowledge what you are saying though; most doctors are in the business of selling drugs to patients. A local doctor in my area actually wrote a book about how disillusioned he was when he realised that this was the case. I was just lucky that another doctor referred me to my current GP because he's not like that.
So sorry to hear about your horrible experience with a completly dysfunctional health system. Terribly sad.
However, it seems you could out of the hospital system, and are now on your own with a GP?
Here you missunderstood me. With my many chronic conditions it was everything else than easy, took so many years and in financial terms about € 500,- a month (for 13 years now!). Only advantage was that I'm used to do much with little, for example traveled for 10 years with only 8.000,- € in total. That was also were my organs were damaged (7x malaria, schistozomiasis, spondilodiscitis, malnutrition..), but only got its bill presented a further 10 years after with advancing age.
So I did have to give my recovery everything, not only with diet but many life-style interventions and really excessively comprehensive supplementation. Most often nutrients have to be taken with all co-factors. However, in my experience vitamin C is unique here, in that it does much of its magic without inbalancing other nutrients.
Maybe that's because most mammals still produce ascorbate endogenously in case of infections, up to 70g directly in the blood-stream with an animal the weight of a human. Pre-humans also had this ability but lost it about 60 million years ago. That's maybe the reason why its still so well tolerated in such high doses. And so beneficial for disease states.
Despite being my most used nutrient, its also the least expensive at about € 13,- per Kilogram. And I'm convinced much could already accomplished with that alone in lack of sufficient funds. Especially with toxicities.
I of course always started any supplement at the lowest possible dose, and increased only gradually over weeks, months and year, while monitoring symptoms and as many labratory markers I could get.
From my over 200 distinct supplements taken only got it wrong when following the common advise of balancing high dose zinc (where I'm still deficient) with a little copper. Though it took years, copper suddenly shoot up and I'm still trying to bring it down further. So do preceed with caution, but do if in any way possible.
All the best.
However, it seems you could out of the hospital system, and are now on your own with a GP?
Here you missunderstood me. With my many chronic conditions it was everything else than easy, took so many years and in financial terms about € 500,- a month (for 13 years now!). Only advantage was that I'm used to do much with little, for example traveled for 10 years with only 8.000,- € in total. That was also were my organs were damaged (7x malaria, schistozomiasis, spondilodiscitis, malnutrition..), but only got its bill presented a further 10 years after with advancing age.
So I did have to give my recovery everything, not only with diet but many life-style interventions and really excessively comprehensive supplementation. Most often nutrients have to be taken with all co-factors. However, in my experience vitamin C is unique here, in that it does much of its magic without inbalancing other nutrients.
Maybe that's because most mammals still produce ascorbate endogenously in case of infections, up to 70g directly in the blood-stream with an animal the weight of a human. Pre-humans also had this ability but lost it about 60 million years ago. That's maybe the reason why its still so well tolerated in such high doses. And so beneficial for disease states.
Despite being my most used nutrient, its also the least expensive at about € 13,- per Kilogram. And I'm convinced much could already accomplished with that alone in lack of sufficient funds. Especially with toxicities.
I of course always started any supplement at the lowest possible dose, and increased only gradually over weeks, months and year, while monitoring symptoms and as many labratory markers I could get.
From my over 200 distinct supplements taken only got it wrong when following the common advise of balancing high dose zinc (where I'm still deficient) with a little copper. Though it took years, copper suddenly shoot up and I'm still trying to bring it down further. So do preceed with caution, but do if in any way possible.
All the best.
Maybe explaining my own experience this time might help to guide you on a different way of looking at these problems. When I first tested positive for the autoimmune antibodies for myositis I had no idea what that disease even was. My birth family all had multiple sclerosis and I had done all of my research on that disease, assuming it to be the cause. I realised that I had to find someone who already knew all of the ins and outs about the disease. So I annoyed the hell out of people on a myositis forum, posting a thread about natural treatments which I knew worked for conditions related to myositis. Some people hated me; faithful to the pharmaceutical companies. Others wanted to know more, drawing me only more criticism from the faithful. I found a nurse, whose husband has myositis, who explained all of the genetic factors involved in the disease and ion channels which she had been able to learn since he developed the disease. Luckily for me she had stalled in her research and had nowhere else to go. Her doctors were completely useless; their GP diagnosing the disease as marital problems. Once she educated me on the things she knew I got stuck into the research. He still has ups and downs but the issues which he was originally diagnosed with have disappeared.
I have gone from the early research into the ion channels to being aware of how bacterial lipopolysaccharides, affected by oxidation, interfere with their activation leading to calcium leakage from muscle cells. You discussed the vitamin C and grape seed extract. That was only preventing the activation of the lipopolysaccharides. Going to that level led me to learning about Odoribacteraceae, a bacteria which produced a bile acid which kills pathogenic microorganisms such as those which produce the lipopolysaccharides. I've long known that seaweed was good for me but that turned out to be the reason why. The oligopolysaccharides in it feed the odoribacteraceae. I'm currently researching how the withanolides in ashwagandha can reduce inflammatory signaling by reducing heme oxygenase-1 activation. I could keep going on but there's really so much information it could fill a book. Health can be as simple or as complex as we want it to be but I have found that the deeper I dig the quicker I can cure the condition.
I have gone from the early research into the ion channels to being aware of how bacterial lipopolysaccharides, affected by oxidation, interfere with their activation leading to calcium leakage from muscle cells. You discussed the vitamin C and grape seed extract. That was only preventing the activation of the lipopolysaccharides. Going to that level led me to learning about Odoribacteraceae, a bacteria which produced a bile acid which kills pathogenic microorganisms such as those which produce the lipopolysaccharides. I've long known that seaweed was good for me but that turned out to be the reason why. The oligopolysaccharides in it feed the odoribacteraceae. I'm currently researching how the withanolides in ashwagandha can reduce inflammatory signaling by reducing heme oxygenase-1 activation. I could keep going on but there's really so much information it could fill a book. Health can be as simple or as complex as we want it to be but I have found that the deeper I dig the quicker I can cure the condition.
Well, I approached it differently. Since I found all natural medicines most of the time never reach the level of neccesary RCR trial science. So nothing there in terms of science what one could depend on really. And since I was in a position of 'nothing more to loose', I simply tried - and it worked for me more than ever expected.
Take for example ascorbic acid, where most informed still believe higher oral doses don't get sufficiently absorbed and in the blood. A whole profit scheme around liposomal vitamin C arose for this reason, even promoted by some distinct docs like Dr. Levy, whom I respect very much otherwise. But he himself made a comparative intracellular-level study which showed, liposomal doesn't increases intracellular absorbtion, only increases retention-time about 50%. Nothing to justify the so much higher price of liposomal vitamin C.
But worse, there is the odd study out of NewZealand which tested ascorbate levels in oncological patients who took from 0 to 20 g vitamin C daily. And contrary to every accepted science found, the serum levels indeed increased with higher intake proportional to intake! Science simply never meassured, but assumed due to much lower doses. As also you do, and thereby never will find out.
You can't find out if ascorbic acid works for myositis by reading all books of this world, because nobody researched or will research it at neccesarily mega-doses. In this tire situation one can only find out by experimenting oneself. You simply couldn't predict from existing research all the health-benefits I got, but from trying only.
When I read ..itis in your condition the first thing which comes to my mind is ascorbic acid up to bowel tolerance (mine is above 50 g of ascorbic acid a day). Now you can keep studying for many years, with nothing coming forward ever (because that high-dose never will be studied). Or you could simply try and find out in a relatively short time.
What was the most ascorbic acid you took in a day?
You confuse me with jaminhealth. When I tested my microbiome had about more diversity then 94% of all tested by ubiome at that time. Also Odoribacteraceae. Which is just an other example where science never will catch up on ascorbic acid influrence also of the microbiome, because they don't study therapeutic doses.
Gread seed extract is maybe good to maintain good health and may assist, but ascorbic acid to bowel-tolerance from my experience seems to be in a completely otherworldly league.
This answer from you to jaminhealth triggered my response to you. Not only are you under the wrong assumption, that you maintained high vitamin C (again, how much?: 20, 40, 60, 80.. grams a day? - Superfoods alone only can give about 0.5g!!!!) and assume you could find out by science - actually set up to fail with natural medicine - but on top of it try to give the impression you speak from a place of authority on vitamin C.
While in reality you never tried even lowest doses, and rely solely on faulty science for hesitating forever. Excuse me, but you are a blind man thinking himself in the position to give guidance. Missleading others.
Or do you really believe that any medication failing becaue given at only 1% of its effective dose, would be proof its ineffectiveness?!?
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To be honest, I found that more than 1,000mg of vitamin C per day tended to make me feel sick. That's one of the common symptoms of taking more than your body can handle. I went much better with high doses of grape seed extract, with over 6,000mg per day. As that works synergistically with vitamin C I figured that I would use that to make up for the difference.
One of the things which medical researchers are focusing on is lipopolysaccharides. They are endotoxins produced by gram negative bacteria. These bacteria don't stain during testing so can go completely unnoticed by doctors because they're so hard to find. Here in Australia the medical community won't even acknowledge any diseases which are caused by gram negative bacteria because they don't want the complications involved in trying to identify the problem. Their theory seems to be that it's easier to ignore the problem than actually deal with it. Lipopolysaccharides are used by the body for a variety of functions but excess levels or oxidative stress trigger them to become toxic to the body so that they trigger a range of health issues. I was able to identify at least two points in muscle function which are affected by this lipopolysaccharide induced inflammation. Although my form of myopathy is termed autoimmune myositis it actually seems to just be normal muscle myopathy resulting from lack of oxygen. In my own case it's actually not the oxygen which is the problem but the silica inhibition of phosphate transfer needed to produce energy which triggers the same inflammatory processes. The autoimmune part, as with many autoimmune and other diseases, seems to be my bodies intervention to try to prevent my body from developing cancer. You wouldn't believe how many diseases medical researchers have identified which are actually just ways in which the body is trying to prevent more serious health conditions.
By destroying the gram negative bacteria, and other pathogenic microorganisms, with the bile acid the odoribacteraceae is able to reduce the severity of the lipopolysaccharide induced inflammation when it occurs, regardless of the reason. Researchers, at the moment, are attributing the long lives of Japanese and Okinawans to both taurine and the odoribacteraceae bacteria.
One of the things which medical researchers are focusing on is lipopolysaccharides. They are endotoxins produced by gram negative bacteria. These bacteria don't stain during testing so can go completely unnoticed by doctors because they're so hard to find. Here in Australia the medical community won't even acknowledge any diseases which are caused by gram negative bacteria because they don't want the complications involved in trying to identify the problem. Their theory seems to be that it's easier to ignore the problem than actually deal with it. Lipopolysaccharides are used by the body for a variety of functions but excess levels or oxidative stress trigger them to become toxic to the body so that they trigger a range of health issues. I was able to identify at least two points in muscle function which are affected by this lipopolysaccharide induced inflammation. Although my form of myopathy is termed autoimmune myositis it actually seems to just be normal muscle myopathy resulting from lack of oxygen. In my own case it's actually not the oxygen which is the problem but the silica inhibition of phosphate transfer needed to produce energy which triggers the same inflammatory processes. The autoimmune part, as with many autoimmune and other diseases, seems to be my bodies intervention to try to prevent my body from developing cancer. You wouldn't believe how many diseases medical researchers have identified which are actually just ways in which the body is trying to prevent more serious health conditions.
By destroying the gram negative bacteria, and other pathogenic microorganisms, with the bile acid the odoribacteraceae is able to reduce the severity of the lipopolysaccharide induced inflammation when it occurs, regardless of the reason. Researchers, at the moment, are attributing the long lives of Japanese and Okinawans to both taurine and the odoribacteraceae bacteria.
One can't take mega-doses of ascorbic acid in pill or capsule form. That would amount to too much of not that healthy fillers and binders. One only takes it by the teaspoon either as pure ascorbic acid (99,9%) powder in a glass of water. If taste is disagreeable with a little bit of fruit-juice. You probably felt sick from the many additives.
If the acidity is a problem, one can take mineral-ascorbates instead (sodium, magnesium.., be carefull not to overdo with other minerals, like calcium-ascorbate). Or again much cheaper by making your own, by mixing sodium bicarbonate - not more than half the weight - with pure ascorbic acid powder in a glass of water. Becomes pH neutral Sodium ascorbate.
Grams of grape seed extract can never substitude titrating ascorbic acid to bowel-tolerance.
Every toxin's oxidative stress gets remedied by only high enough doses of ascorbic acid (20, 40, 60g..). You can of course also ignore that, because a certain preparation did make you sick once. Or you could deal with it, by finding proper preparations of ascorbic acid agreeable to you.
Again, why did my microbiome show so little gram-negatives? Ascorbic acid again to the resque? (I don't eat seaweed) - Did you ever test your microbiome? Or all your considerations, which are holding you back, are again based on assumptions and speculations only?
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After that ignorant statement you rarely answered any of my direct questions.
It took you 4 further posts to finally admit you simply know nothing about therapeutic doses, which you spoke of with an air of authority in the beginning. And with the justification of wrong understood science.
Probably you're not aware of this yourself, but maybe a really good hind to reflect on your unconscious tendencies, if you want.
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pamojja, Since you wish to take my statements completely out of context, refusing to acknowledge that even vitamin C simply can't cure poisons (such as the toxic silica nanoparticles), and have chosen to take such a venomous stance I have to conclude that we will simply never agree upon the best approach to natural health. I will leave you with the simple fact that Dr Linus Pauling died from one of the very diseases, Cancer, which he claimed to have cured.
Linus Pauling died of prostrate cancer at the ripe age of 93. Guess myself in the same situation even a decade earlier would already then let it pass: I lived life to the fullest.
You still state things you don't have experience with and have absolutely no science in support. If pointing out such misleading pretense on your side is not received as constructive criticism and with a bid of conscience, then be prepared to hear more friendly reminders from me.
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You still state things you don't have experience with and have absolutely no science in support. If pointing out such misleading pretense on your side is not received as constructive criticism and with a bid of conscience, then be prepared to hear more friendly reminders from me.
❤
antibiotics alone won't do much for lyme a protocol is needed with antiparasitics too and it is complex. Klinghardt Ins. has a whole protocol with herbs and antiparasitics-
JulianaMoon
New Member
I haven't read through all the comments from your post yet but I will.
I also have the severe breathing issues you described.
I wanted to add that I have had asthma since I was 19. And COPD since 2012. Before I started getting flu vaccines, everytime I got the flu, it went into bronchitis. I even "died" for 3.5 minutes in an ambulance, was in ICU for 5 days, and a week later I was back to work. Everytime I got the flu, it was the same. Bronchitis, and a week or so after I was fine. I get the flu shot every year since 2006 and never get the flu.
In late fall 2017, I was late getting my flu shot. And, I got the flu. I also got strep at the same time. It went into bronchitis as expected, but this bronchitis was different. I was hospitalized, came home on oxygen for 2 months but instead of the one course of the Zpak step down prednisone, and antivirals/antibiotics, I went through 3 of them. 3 courses. I could not get rid of it. It took 3 months to finally recover, but I got ME/CFS. Took 4 years to get diagnosed out of state. I receive no treatment for it and all my Drs here in rural TN say "It's depression" because I'm bedridden. I tell them Georgetown University diagnosed me with severe ME. They laugh at me. "ME?" chuckle "Really now. That's what they say?" chuckle. "You suffer from depression. Nothing more." It is infuriating they are so clueless. Anyways...
I wanted to add that my severe shortness of breath is not helped by my asthma treatments. I take Ventolin Inhaler, and Symbacort. Also, I have a nebulizer. I may get 15 minutes of relief, but thats it.
Whatever is causing this severe shortness of breath in myself has to be more than inflammation in my airways. Or maybe permanent inflamation in my airways. I don't know. Because I have no Dr who understands ME/CFS, I may never know.
I am so sorry you are all having this shortness of breath. Mine is so bad, I have panic attacks if I need to shower.
On a positive note, I showered today. First time in 2 weeks. It was horrible. But I did it!! Yay!!! I always wonder what day I will no longer be able to shower. It wasn't today.
I also have the severe breathing issues you described.
I wanted to add that I have had asthma since I was 19. And COPD since 2012. Before I started getting flu vaccines, everytime I got the flu, it went into bronchitis. I even "died" for 3.5 minutes in an ambulance, was in ICU for 5 days, and a week later I was back to work. Everytime I got the flu, it was the same. Bronchitis, and a week or so after I was fine. I get the flu shot every year since 2006 and never get the flu.
In late fall 2017, I was late getting my flu shot. And, I got the flu. I also got strep at the same time. It went into bronchitis as expected, but this bronchitis was different. I was hospitalized, came home on oxygen for 2 months but instead of the one course of the Zpak step down prednisone, and antivirals/antibiotics, I went through 3 of them. 3 courses. I could not get rid of it. It took 3 months to finally recover, but I got ME/CFS. Took 4 years to get diagnosed out of state. I receive no treatment for it and all my Drs here in rural TN say "It's depression" because I'm bedridden. I tell them Georgetown University diagnosed me with severe ME. They laugh at me. "ME?" chuckle "Really now. That's what they say?" chuckle. "You suffer from depression. Nothing more." It is infuriating they are so clueless. Anyways...
I wanted to add that my severe shortness of breath is not helped by my asthma treatments. I take Ventolin Inhaler, and Symbacort. Also, I have a nebulizer. I may get 15 minutes of relief, but thats it.
Whatever is causing this severe shortness of breath in myself has to be more than inflammation in my airways. Or maybe permanent inflamation in my airways. I don't know. Because I have no Dr who understands ME/CFS, I may never know.
I am so sorry you are all having this shortness of breath. Mine is so bad, I have panic attacks if I need to shower.
On a positive note, I showered today. First time in 2 weeks. It was horrible. But I did it!! Yay!!! I always wonder what day I will no longer be able to shower. It wasn't today.
Juliana, I don't know whether you have ever hear of it but there is a protein, present in skin, respiratory passages, and gastrointestinal tract, called filaggrin. It provides their surfaces with the strength needed to protect the underlying tissues from harm. Filaggrin deficiencies, resulting from either genetic mutations or zinc deficiency, lends itself to the development of allergic responses, including that of asthma. https://pubmed.ncbi.nlm.nih.gov/29851030/ I only recently learned of it myself in researching my own long term health issues. Filaggrin is comprised of keratin and a handful of other keratin like substances. When insufficient filaggrin isn't present in respiratory, or other, surfaces it provides irritants and microorganisms an opportunity to penetrate the surface and to induce reactions. While there isn't a lot of research on nutrient deficiencies regarding filaggrin itself there is plenty of information out there about nutrient deficiencies and keratin. Most of that research seems to revolve around zinc and nutrient cofactors which are required to enable that zinc to be used in all of the uses the body has for it. Infections can be particularly harmful as they greatly raise the need for zinc in the tissues and fungals can actively draw zinc from tissues to propagate.
David Tyrer
Active Member
Hi all, just coming back to respond as it looks as if there's been a few responses recently asking whether my breathing improved and/or whether I found any answers.
In short: unfortunately not. It's been over 4 years now and it's only continued to get worse. I've tried so many things but to no avail. I'm currently undergoing respiratory physio but it's absolutely pointless. The working theory from respiratory is that it's a breathing dysfunction but I very strongly disagree. I'm just going along with the physio to tick the boxes with my doctors.
From what it feels like to me, after experiencing it for so long, is respiratory muscle weakness that is steadily worsening. Which would explain why no issues have been found with my lungs. I can actually feel the muscles labouring. I struggle a lot when lying on my back and some days/night, I can't lie on my left side at all. It feels much worse. Weirdly, I also notice that my left side tenses on its own a lot while I'm sitting down.
I inject B12 myself a couple of times a week, I take LDN daily - between them I find they take the edge off the breathing issues. I am also about to start Nattokinase, as I've heard good things about it in ppl with long covid and also those with ME.
Currently awaiting an upright MRI to check for CCI, etc but nothing much else to update on this, I'm afraid.
In short: unfortunately not. It's been over 4 years now and it's only continued to get worse. I've tried so many things but to no avail. I'm currently undergoing respiratory physio but it's absolutely pointless. The working theory from respiratory is that it's a breathing dysfunction but I very strongly disagree. I'm just going along with the physio to tick the boxes with my doctors.
From what it feels like to me, after experiencing it for so long, is respiratory muscle weakness that is steadily worsening. Which would explain why no issues have been found with my lungs. I can actually feel the muscles labouring. I struggle a lot when lying on my back and some days/night, I can't lie on my left side at all. It feels much worse. Weirdly, I also notice that my left side tenses on its own a lot while I'm sitting down.
I inject B12 myself a couple of times a week, I take LDN daily - between them I find they take the edge off the breathing issues. I am also about to start Nattokinase, as I've heard good things about it in ppl with long covid and also those with ME.
Currently awaiting an upright MRI to check for CCI, etc but nothing much else to update on this, I'm afraid.
David, I was doing a lot of study on the medical research coming out about covid and how it affects the body. No matter what effect the virus itself has had on people's lives and deaths it has led to a massive leap forward in the understanding of health. The fact that your condition commenced with an infection could indicate that it induced a nutrient deficiency in your body. One of the most discussed and, as I mentioned to Juliana, difficult to fix deficiencies is zinc. https://pubmed.ncbi.nlm.nih.gov/16338007/ Phytates prevent its absorption, both copper and iron compete for absorption with it, infections drain it, gene mutations reduce absorption or transport around the body. https://academic.oup.com/jn/article/130/5/1378S/4686381?login=false https://www.drberg.com/blog/zinc-effects-on-your-respiratory-system It just seems to be a difficult mineral to get back to normal if it gets out of balance.
Merida
Well-Known Member
Shortness of breath : have you had a complete cardiac workup ????? Also, Chiari /syringomyelia issues can include shortness of breath. An expert neurosurgeon is needed for diagnosis. ( yes - I had 3 expert workups by neurosurgeons : Chiari 0, tethered cord - both critical to all symptoms)
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