COPD & Emphysema Support Group
COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...
The doctor is also giving me another inhaler to try after I reported that the disc inhaler is making things worse instead of better. Last time I tried the disc a few years ago, I used it for six weeks and it didn't help anything and four weeks into using it, it began to make my lungs burn and it kept getting worse until I stopped, and things went back to normal after several more weeks, very much the reverse of the two weeks where my lungs started to burn. I used it by itself daily then, now when I tried using it with albuterol, the burning is immediate.
The steroid in the disc inhaler seems to help for the first day I use it and by the next day I regret using it for getting worse, although the oral steroids the hospital gave me seemed to help with a number of my problems without making my lungs worse, but the doctor is too hesitant to give me more oral steroids because of possible side-effects.
So I have a COPD diagnosis that I don't have much faith in - all that's ever been done to date to sort out whether I have COPD or asthma is asking if I smoke, even after I've reported to doctors for three years now that what really gives me trouble is dust. Stirring up dust will make me sick for three days, and I was stirring up dust trying to do housecleaning right before both hospital visits earlier this year.
Every "COPD" symptom I've reported they tell me is typical for COPD cases, but I ask if the same symptoms could be signs of infection, and virtually everyone I've asked has said "yes" but no one bothers to look into the matter of infection. Today I asked my latest doctor (who I like, and who isn't a bad listener as doctors go) if he thought I might have lung infection, and he mainly dismissed the idea because I wasn't running a fever.
Four years ago I saw an infectious disease specialist because I have a number of dignoses where there are routine findings of infection in clinical studies, and he dismissed the very idea that I might have any of the infections typical for the diagnoses simply because I wasn't running a fever. I went straight home and double-checked and the first thing I found was a study of people barely older than myself who had confirmed cases of sepsis from infection, and 1 in 4 showed no sign of fever even though they were definitely infected.
Recently I found a number of articles in Yahoo! News about people who are living with COPD, and amazingly almost all of the articles mention that infection seems to have been involved in the origin of these cases.
Even with my skin disease (Hidradenitis suppurativa), I've usually had huge trouble getting doctors to believe there is typically infection present, even after the remarkable research that has been done that shows us that the better the methods used, the more typical the finding of infection is (and particular infections), but due to an error that's been repeated and repeated, doctors' trusted sources discourage them from thinking there is an infection present, even after they diagnosed infection at first sight. Normally they get a hold of the diagnosis and start second-guessing their own diagnoses of infection.
We are also told this skin disease is incurable and the damage from it irreversible, whereas I seem to have my case "partly cured" by one of my old doctors giving me erythromycin and apparently getting rid of one of the more troublesome typical infections (an unusual Staph species), causing permanent improvement and reversal of damage anywhere that isn't still infected with other bacteria that defied the antibiotics.
So we get to COPD and I hear the very same things I'm fairly sure aren't true with the skin disease - "not infection, isn't reversible", but that's exactly what I've seen with the skin disease is that it is reversible, and temporary remissions achieved using antibiotics are incredibly common, although once they've been discouraged from thinking there is infection there, doctors seem to tend to believe that there isn't infection present, and the antibiotics are having beneficial "anti-inflammatory" or "immunosuppressive" side effects rather than encountering any microbes.
Permanent improvements may be rare for a whole number of reasons, from the wrong antibiotics for a particular microbe, things in the patient's diet that interfered with antibiotics, inadequate dosages of antibiotics, dilution of antibiotics by mixing them or antibiotics that are able to interfere with one another...
Lower than lethal doses of certain antibiotics can suppress rather than kill certain bacteria. At least one scholarly work has actually suggested using this as a strategy - giving erythromycin even when it isn't killing microbes, as a way of turning off their flow of nasty, symptom-producing toxins. Of course, if the microbes aren't being killed, as soon as the antibiotics stop, they get back to making trouble - which may be exactly what happens too often to people who have my skin disease, where all kinds of antibiotics seem to help - until they run out.
If I say I've heard it all before about other diseases besides COPD being "incurable" or "irreversible" and I'm still not sure what to really believe, I usually get labelled as some desperate tobacco addict who is willing to believe anything in order to justify an addiction, in spite of the fact that I'm not only looking at the same medical papers and medical textbooks that doctors' trusted sources are looking at, but finding some fairly obvious errors in them, too.
I'm still not sure why to believe that the very same thing hasn't happened with my lung disease that's happened with my skin disease - once doctors start believing there isn't infection, the obvious signs of infection seem to become invisible to them, even when they initially diagnosed infection, even with my most recent troubles. I wasn't told I made two trips to the hospital for breathing treatments early this year because I smoke (at first), I was told very clearly by the doctors there that I ended up there because I contracted an infection.
I should have kept a list of the medical papers I've seen
that report improvement in lung disease cases using antibiotics or antifungals - some of them I've already posted to various groups on DS. Several of them express concern whether typical inhalers, with their reputation for promoting fungal growth, are even appropriate for lung complaints if they happen to be caused by fungal infection.
It's a shame we don't often have more follow-up on studies to tell us how the people who were helped with antimicrobials were doing further down the road, but every time I read about someone's lung symptoms being alleviated using antimicrobials, I do at least sit up and take notice.
Even my wife has been very good at blaming my troubles on my habits, and thinks I need more exercise and activity, but my big troubles began very suddenly when I was already doing everything I knew to be fit. I'd been taking long walks, - often five or ten milers - climbing challenging hills, losing excess weight, trying to eat the healthiest diet I possibly could and etc. I was also smoking less than normal because I barely felt the cravings if I kept moving.
I'd been saving trees by cutting the ivy off them that was trying to pull them down, as a motivator to get out there and do something. I was particularly proud of myself for saving a few beautiful trees that were especially close to the road but very difficult to get to, and was determined to get back out the next day and finish. I came home and greeted a friend who was just recovering from a "bug" that was going around, and next I knew I was sick for three days...
And I my lungs have never been the same ever since. I went back out in a week or so and tried saving trees again and got so out of breath that I had to give up. That was five years ago. I tried albuterol inhalers and at the time got no help out of them at all, much as I'm still not getting all that much help from them now.
I certainly feel like this sudden origin of symptoms should have meant something important to my doctor if he hadn't already ruled out infection over so little as the lack of a fever.
I still have a hard time to believe that people get COPD from smoking all of the sudden like that, I still believe that if tobacco is going to cause lung trouble it will be a slow decline, not a sudden, dramatic loss of function.
Another problem with my skin disease is that even a lot of doctors and researchers decide there's no infection present because permanent improvements from antibiotics seem to be very rare, but there's a lot they don't realize, starting with it being reported in literature that it's very typical to have more than one infection present. It may be fairly common to think an antibiotic failed simply because it didn't kill the whole list of what's present, if a person doesn't know there is a whole list that may be present.
Another thing these skeptics may not realize is the possible presence of microbes living in biofilm. Biofilms have quite the reputation for posing a challenge to ordinary antibiotic use. All these skeptics have to do to sound very silly is ask "If it's an infection, why didn't the antibiotics get rid of it?" about biofilm. Sure enough, one study after another found biofilm in a majority of patients with my skin disease (HS), and the National Institute of Health has advised everyone that 2/3 of all infection seen in clinics may involve biofilm.
Biofilms often tend to be mixes of different microbe species, or even different types of microbes such as fungi together with bacteria. One leading authority on biofilms doesn't seem to think it's very likely for us to ever find biofilms infecting people that are made of a single microbe species.
By now I've read a great many papers on microbes, biofilms, antibiotics, and anything else that might pertain to being able to get better results with antibiotics more often. I'm not sure anyone has all the answers yet, we seem to have worn out one theory after another as to why biofilms may be harder to get rid of with antibiotics.
One of the things I've learned about microbial biofilms (fungi can form biofilms too, and also can partner up with bacteria in biofilms) is that they may excel at degrading our fuel supply into by-products that suppress the immune system and keep it from doing its job cleaning up infection. This is supposed to be how Staph infection can keep the immune system out of an abscess, by generating adenosine as a by-product.
Although it belongs in the body and is a routine part of human chemistry, excess adenosine very much sounds like bad news. I have a whole collection of articles about the adverse effects it can cause, including its ability to trigger asthma attacks if placed in an inhaler and inhaled.
Recently, I learned that there are researchers proposing that the methacholine challenge, which as I understand it us used to deliberately trigger an asthma attack to identify asthma cases, works by way of generating adenosine.
That may give infections, and particularly biofilm infections, the ability to generate them too - especially if a physician believes there is no infection there and does nothing about infections that may be present.
Could smoking promote infection? Well maybe - some authors have reported that tobacco contents promote biofilm formation in vitro - but with my skin disease, patients may typically have genetics that put them at a disadvantage fighting off certain types of infections.
Perhaps more importantly, inflammation - at least transient inflammation - seems to be a normal part of immunity. The same things sold over the counter as "immune boosters" may promote inflammation and thereby rev up the immune system so it's ready for cold and flu season - but if smoking does this same thing, it's considered a bad thing - whereas chronic infections may often actually be good at suppressing it.
There's quite a lot of literature on infections and cystic fibrosis as well, even if as usual, most authors don't seem very sure whether or not the typical infection could cause the symptoms in question. Indeed, I've found few authorities in the world who seem very devoted to translating microbial toxins into what sort of symptoms to expect from these toxins.
One can also easily make up a model of emphysema, where a biofilm infection attracts immune cells and then clobbers them with adenosine, which can not only inhibit their function, but may be able to promote unwanted behavior like neutrophil degranulation. As described in literature, adenosine may be able to cause these immune cells to drop off their deadly microbe killing payload short of the target. This payload includes the enzyme elastase, which degrades elastin - the same protein that participates in providing air sacs in the lung with elasticity.
My guess offhand would be that things like eosinophilic asthma may be more examples of ordinary immune cell recruitment to the site of a lung infection (in this case possibly parasites?), followed by the immune cells being inhibited or interfered with by toxins of microbial origin.
In recent months, I have been posting material to the DS Chronic Fatigue Syndrome group, that refers to the possible potential of adenosine to also disrupt metabolism, as a possible part of the story of CFS. I have long been commenting that the idea of bronchodilators doesn't seem to make much sense to me when I don't have any real complaints about lack of oxygen. Indeed, last December I was quite convinced I wasn't breathing, and not only did my wife point out that if I wasn't turning blue, I was getting oxygen whether my brain thought so or not, as did an old friend who has much experience with asthma.
(I've also run across literature describing how people with lung trouble can be trained to get the message that they're getting enough air, by monitoring oxygen meters to see that they are when their bodies or their brains seem to be telling them that they're not).
Disrupting metabolism such as adenosine may be capable of, however, might be able to not only cheat us out of some of the benefits of oxygen (aerobic respiration) which can be vital to proper metabolism, but this may also induce inferior, less efficient modes of metabolism that may produce greater than normal quantities of CO2 as a by-product of burning carbs. I've certainly noticed how much of my breathing troubles seem to involve not gasping to get air in, but instead seem to involve desperately trying to blow something nasty out. Small breaths in, big breaths out, repeat... how can a person catch their breath most easily doing that?
I've had to go so far as to almost make up my own theory how inhalers even work if bronchodilation isn't actually the critical function, and again adenosine and its cellular functions and targets ended up looking like it belongs in the picture. Upon learning that adenosine may mediate the methacholine challenge, adenosine seems to look like it may belong in the picture that much more.
Here is a scholarly article that describes this
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3453636
"Endogenous adenosine formed from ADP and AMP by the action of ATPase and 5′-nucleotidase is known to cause bronchoconstriction and asthma in humans. It has been suggested that this action of adenosine is due to its binding to specific purino receptors in the mast cells in the lungs and consequent release of mediators which elicit bronchoconstriction and asthma. The release of these mediators leading to asthma was also believed to be due to vagal stimulation by adenosine. Though the role of adenosine in causing bronchoconstriction leading to asthma is well confirmed the actual mode of action and details of the mechanisms involved in the clinical manifestation of asthma remain unclear."
I tend to want to believe that the people in those Yahoo! articles who were quite aware of the role of infection in the origins of their COPD were very much on the right track, although, like many doctors, they seem unaware that the same infection may still be in there, and may be suppressing the immune system and preventing healing.
The same problem seems to come up with Lyme disease, some authorities seem to refuse to believe in post-antibiotic Lyme cases, which seems to again reflect a belief that antibiotics are infallible against infection, when in fact there may be many ways to get the treatment wrong. What's the skeptic's objection going to be? "If it's an infection, why don't the antibiotics get rid of it?" - yet clinical studies do find evidence of infection in at least some cases of Lyme Diseases following antibiotics.
Next the skeptics will object that even our best detection methods (PCR) can't tell the difference between live and dead bacteria, and they'll want to hypothesize that what was found were dead bacteria that were already killed by antibiotics.
One small problem with this line of reasoning may be that if the immune system were doing its job properly, there probably shouldn't be dead microbes loitering around like that. That itself may point to the presence of live microbes that are suppressing the immune system so that neither live nor dead microbes nor other debris may be cleaned up properly.
I'm inclined to believe I only have to look as far as my own rear end to see evidence of this kind of thing - my pilonidal cyst surgery twelve years ago was healing nicely until the typical signs of infection returned and set up the typical small, hard, round, painful, burning cysts right where the incisions were made, and nothing ever healed any further. A pimple or a sliver that starts to show signs of this kind of infection may never resolve while those that don't will clear up normally. I have pimples on my thighs that took on these characteristics and have been there twelve years now and a sore on my chin from where an abscess once was that has been there over twenty years.
I have enough papers in my collection that I could provide respectable references for most if not all of this, although it's a huge task to round it all up and I'm pretty badly burned out from how hard I've studied the past five years and how little I have to show for it, and from the heartbreak of skeptics often running the show.
I'm also not very clear-headed at the moment, for being on more than one medication that promotes drowsiness.
What's the point of all this, though? Well, not to tempt anyone with may still be false hope, or to imply that it's okay to smoke, or to throw away your inhaler, but...
Has anyone doing research ever really succeeded in taking the careful steps that may be necessary to clean out infection in COPD, or any of these "irreversible" diseases?
How do we know for sure that COPD isn't reversible if only the infection is successfully removed that may be preventing healing from taking place?
Two of the first things I learned about immune cells are that they have vital roles to play in repair of damaged tissue, and that they can switch between different functions, such as switching between repair or defensive functions. At least one article as I recall it, went as far to try to point out it might be something of a waste of time for immune cells to conduct or orchestrate repairs while they still have a battle against invaders to fight.
There's also the "good days, bad days" business - or in my case, sometimes "good years, bad years". The past two years things have been pretty bad, but I'm better this year without the medication being able to take credit for it. How can that even happen with an "irreversible" disease?
Once more, I just learned again today how easily infections can suddenly become invisible, even to fairly open-minded doctors, and how the whole idea of an infection can be dismissed just because a patient isn't running a fever, or probably often just because an infection isn't acting in an expected manner.
Maybe I'm being foolish, but I continue to hang onto hope that we will discover that COPD (and many other "irreversible" conditions) may be reversible, and that evidence to this effect may quickly accumulate (much of it may already be out there although it may be bits and pieces that aren't filed under "COPD cures") if we remain open to the possibility, rather than making up our minds in advance, or taking someone else's word for it, that there is no hope.
Naturally if I tell someone about my predicament, where stirring up a little dust is enough to make me ill for three days or even send me to the hospital, the first thing they'll suggest is a dust mask, but I can't keep one on because I feel like I can't breathe through it even with a big bushy beard pushing it away from my face so it leaks like a sieve.
I was remembering people warning everyone to wear surgical masks when Mt. St. Helens went off, and there I was shoveling six inches of ash off the roof like it was snow without a mask, because I didn't feel like I could breathe through it so I took it off - some 35 years prior to a diagnosis of lung disease.
I can't remember a time in my life when I could wear one without feeling like it was suffocating me. This may be "all in my head" and this keeps reminding me how much of my lung trouble seems to be "all in my head".
The next thing people will suggest to me is to tie an old t-shirt over my face to keep out dust when I'm cleaning, but I've tried it several times, and I keep thinking I can't breathe through it. Obviously the feeling of not being able to breathe through even something as porous as a ratty piece of stretched out cotton might be "all in my head" too.
In December I summoned my wife because I thought it was my last chance to say goodbye to her because I felt so much like I couldn't breathe at all and didn't even think I could make it to a hospital. She pointed out that I could breathe because I wasn't turning blue, so apparently not being able to breathe in December was "all in my head".
Yesterday I speculated that being likely to have some autistic issues, maybe my dislike of dust masks is like my dislike of turtleneck sweaters that feel like they're choking me even when I know they're not (but my brain thinks so). In the past several years, once I got so out of breath coming up the stairs that I was sure I couldn't breathe unless I stripped down from the waist up, as ridiculous as that sounds - more that's obviously "all in my head".
These people want to tell me it's "all in my head" too, and that an oxygen meter (oximeter) for biofeedback training can prove to my brain what it otherwise must be too confused to understand, namely that I'm still getting air during a bad attack of breathing trouble.
Pulse Oximetry and Breathing Training
Christopher Gilbert, PhD
https://www.aapb.org/files/publications/biofeedback/2012/biof-40-04-137-141.pdf
"When training control of breathing, an oximeter helps to reassure clients who hyperventilate that their oxygenation is adequate, offsetting their perception that they are not getting enough air...
Small pulse oximeters have become widely available and can be useful for noninvasive monitoring of blood oxygen saturation by nonmedical personnel. When training control of breathing, an oximeter helps to reassure clients who hyperventilate that their oxygenation is adequate, offsetting their perception that they are not getting enough air. Low saturation may indicate a medical condition that impairs oxygen absorption. In that case, hyperventilation is a biological compensation that should not be tampered with...
Hyperventilation lowers CO2 because more is being exhaled than is being replaced by the body. As a result, hemoglobin molecules are stimulated to retain oxygen instead of releasing it. The opposite occurs when CO2 is above normal: Hemoglobin releases more of its oxygen so that it can diffuse into the tissues and provide essential fuel (This is called the Bohr effect; McArdle, Katch, and Katch, 2005, p. 309). Therefore, holding one’s breath will raise CO2 and speed the release of oxygen, which works out well when no new oxygen is coming into the lungs. Holding one’s breath will naturally make oxygen saturation go down; having emphysema, chronic obstructive pulmonary disease (COPD), or some condition that simulates holding one’s breath will do the same."
I keep wondering how it could happen that my brain is misinterpreting important signals from my body to create this false perception of inadequate air supply. Apparently this delusion is even getting in my doctor's head, who thinks I've damaged my lungs badly in spite of the sudden onset of such severe lung trouble during a community outbreak of infection (a condition often reversed by antibiotics), or any other evidence to the contrary.
I guess the doctor just doesn't realize it's "all in my head" and not his, and there are people out there who think that biofeedback training with an oximeter may be able to help what is not supposed to be able to be helped? - because you know, it may be "all in my head" but it's not supposed to be reversible, right?
Ironically, I have paradoxical breathing. I breathe backwards - my gut involuntarily goes out when I breathe out and in when I breathe in like that makes it any easier to take a deep breath with my stomach pushing up on my lungs when they're trying to expand, unless I stop and observe and catch it and correct it (biofeedback).
Sometimes the only way I seem to catch my breath during an attack is to remember how to breathe properly, and I'm often amazed at how quickly this seems to work.
I have suspected a dysautonomia of some kind is at work with the backwards breathing and an infection is given by literature as one possible cause, just as infection is a strong contender for a cause of Tourette's but I'm still surprised that the Tourette's medication guanfacine I've been taking several weeks now so far seems to do more to help this backward breathing habit than it's doing about the Tourette's so far, which I've never even heard of before.
I've already gone to check my breathing since I started the med and found it working normally a lot more often than anytime the past several years, is what I think.
Of course, I think with my brain and as we already know, my brain is very easily fooled and apparently can't tell oxygen from CO2 or inhaling from exhaling out without me looking over my own shoulder as a chaperone. I wish this easily fooled brain of mine were smart enough to sort out exactly what is playing tricks on it and how so that someday I might figure out just how much of my troubles are "all in my head" and how much aren't.
On the other hand, my easily fooled brain has already worked out how closely my Tourette's may be linked to my breathing and my sinus troubles, and a neat little trick where if I push up on the end of my nose about an eighth of an inch or so, I can stop the tics that way whereas I can't otherwise get them to stop no matter how hard I try.
At the point where pushing on the end of my nose stops the tics, my nose starts to feel like I can actually breathe through it properly for a change. (Blowing my nose often helps with the tics, which is crazy and must be "all in my head" too).
I've long had the trouble where if I get stressed out I think I have to raise my voice to talk and breathe at the same time (nothing stresses me quite like someone demanding an answer when I shouldn't try to give one at the moment), and my Tourette's especially with the meds is much better if I sit and much worse if I stand like it thought it were orthostatic intolerance or something, which I read can often come with CFS and nearly asked my doctor about last visit. Both of these ideas being ridiculous, they're probably more that's "all in my head".
Aside from cold air up my nose, I don't know anything that sets off the Tourette's quite like having a bout of breathing trouble and thinking I won't be able to catch my breath, but so far I have always caught my breath again or I wouldn't be typing this, so more to file under "all in my head"?
I really can't help but wonder what would happen if I could take all this stuff that's "all in my head" and get it out of my head and into the nearest trash can.
There are more articles like the first one that are out there.
https://www.ncbi.nlm.nih.gov/pubmed/15208975
"After 10 weeks of training, participants showed statistically and clinically significant improvements in 6MWD [the distance walked in 6 min] and quality of life. Significant changes were also seen in self-efficacy, disability, dyspnea before and after the 6MWD, and HRV amplitude during spontaneous breathing. We conclude that our intervention is feasible for patients with COPD and that further research using a randomized controlled design is warranted."
The infamously irreversible COPD improved by something so simple? Now it must be "all in their heads".
Asthma too?
https://www.ncbi.nlm.nih.gov/pubmed/15302717
"CONCLUSIONS:
The results suggest that HRV biofeedback may prove to be a useful adjunct to asthma treatment and may help to reduce dependence on steroid medications. Further evaluation of this method is warranted."
Learning how to breathe can replace steroids even? That would be awesome because steroid inhalers aren't working for me. Now if we could just explain why grown people have to be taught how to something they were born knowing how to do without even thinking about it, like breathing correctly...
Geez, maybe this stuff is "all in everybody's heads"?
Except I doubt I'd ever get my doctor to believe any of this, even if it's "all in his head" too.
I don't really know what to make of any of this, but it sounds vaguely hopeful somehow, so I thought it might belong to this thread?
Also as of this morning, I'm already amazed how on days 2 and 3 (today) of 7 days worth of antibiotic my doctor gave me for a sore on my rear, that I've seen most of my complaints turn around just that quick at least for part of the day - Tourette's, very CFS-like symptoms, hunching over (not from being out of breath although it would be easy for people to get the wrong idea and think so), trouble standing...
I haven't even been able to change my own bedding in a month and yesterday I not only did that but even felt like trying a few push-ups and did as many as I ever could when I was out of shape like I am now.
Way too soon to tell anything but it does try to reinforce my suspicions that a lot of what I'm dealing with may involve infection, but even then I never dreamed that anything might turn any of my complaints around that quickly.
Of course, my doctor will probably tell me that any improvement was "all in my head", I doubt I could have got him to give me an antibiotic for Tourette's or COPD or asthma or anything but the boil on my bum in a million years.
Again, I don't really know what to make of any of this, but it's all trying to tempt me to try to have just a little hope that things may not be quite as hopeless as I hear - especially if actually have an accurate COPD diagnosis, because we all know there's no hope for that, right?
I tried to ask a specialist why I'm coughing up so much stuff - if I didn't smoke of course they're going to say infection, but because I do they deny I could have one - and he starts telling me about how smoking made my cilia fall out without him even bothering to look. I didn't ask why it's hard to cough up, I asked why there's so much junk coming up just like I had a bad cold or flu or some other infection, which is probably exactly what they'd think I had if I didn't smoke.
They don't even listen to my questions, they just keep lecturing me when they haven't even tried to sort out whether I have COPD or asthma, and I'm getting tired of being treated that way.
The most important thing my post is about is whether something else that nobody even really bothered to check into is whether whatever lung disease I have is really irreversible and whether it's really as bad as it seems. I've been told the sores from my skin infection are irreversible, too, but I've seen for myself how they go away when someone succeeds in killing some of the infection that's present, and I'd like to know why things aren't much the same for my lungs. I'm very tired of the constant deluge of misinformation out there about my "irreversible" skin disease. The bottom line there seems to be we are not going to see healing of damaged tissues as long as there is still live infection present.
I have good days and bad days too, but I'd like to know where I even got the lungs to have a good day in the first place, and I'd like to know how I can have the occasional good day that's so good that I probably wouldn't know I had a problem at all. I've had days like that as recently as the past few months. I had a doctor tell me that my lungs were still in reasonably good shape and that I did good on the lung volume test - the very same day he gave me a COPD diagnosis, apparently for no other reason than I said I was getting out of breath and that I smoked. Before that I got told I got out of breath because I was overweight and out of shape. I had to go out and walk off 50 pounds just to put that lie to rest.
I tried to tell my last doctor about the way I react to dust and dust mites and asked if I might be asthmatic, and she said I had asthma and that it was already in my file that I had COPD/asthma, when it wasn't, and my new doctor still can't find anything about asthma in records.
I am tired of that kind of doubletalk and runaround, and I am tired of doctors denying I could have lung infection after they all just admitted that I could, but proceed from there to completely ignore the subject or deny that I'm showing any symptoms - again, after they just admitted that every symptom I complain about could be a symptom of infection!
I am tired of them blaming the smoking even when I try to tell them that my lung troubles had a sudden onset like an infection, not a slow, steady progression.
I'm getting very reluctant to take anyone's word anymore for what's going on here, and I hope anyone reading this can understand why.
Again, if researchers can brag about improving any lung disease just by training people to breathe properly, I really have to ask what is going on here, starting with the tricks my lung disease can obviously play on my mind that I really think I cannot breathe when I'm not showing signs of really starving for oxygen like it feels like.
This is very much what research like I posted seem to be saying is patient's brains are being tricked into hyperventilating so I don't think it's just me we're talking about. Is that a lung disease, a neurological disease, or an infection? I wish I had some real answers for once from any doctors, instead them always saying things that don't make a lot of sense.
I may be foolish, but I am still trying to hold on to some hope of at least a partial recovery. After all, the best way to kill hope is probably to deny that any even exists, and I've already had my fill of doctors denying things.
P.S. By the way, yes I know I shouldn't smoke, whatever I have, but the cigarettes aren't nearly as bad as a little dust, (dust is enough to put me close to having to go to the hospital for two or three days even if I use an inhaler and may have been involved in my hospital trips this year), and I've had terrible luck with nicotine replacement therapy so far - either the doctor shoots down my suggestion, or there are problems with it. Somehow just the nicotine doesn't satisfy the craving so next I know I'll be smoking on top of gum or patches, and e-cigarettes are even worse. The doctor wants me to talk to my therapist about Chantix to make sure it's compatible with my meds but they still need adjusting so I'm not that far yet.
For what it's worth, some authors have tried to blame my skin disease on smoking because of a study that found that a lot of patients smoked, but no one can even begin to explain how smoking would cause that and the world's leading authority on the disease actually wrote to a medical journal asking people to stop blaming the disease on smoking until we have some real evidence, and even suggested that maybe a lot of us patients smoke because we're so miserable and it gives us a little bit of relief (tobacco really is a lot less frightening than some of the other options), or even in some unknown way actually helps with the disease. There are a number of diseases where there are "smoker's paradoxes" where in spite of how everybody feels about tobacco, patients who smoke seem to have less severe disease.
Last time I tried to cut down my smoking a few years ago, instead of getting better like my doctor insisted, it made my skin disease so much worse I almost had to go to the hospital with it, and when I went back to smoking my usual amount, it immediately stopped getting worse. When I tried to tell my doctor this, she accused me of lying because I said something that went against her unfounded beliefs.
The time before that I did cut my smoking in half and I've been there ever since, but I paid a heavy price in having my skin diseases get so bad that they did require surgery for the first time. At the time I never dreamed that cutting back smoking might have made things worse, but there is kind of a pattern there. I used to believe tobacco could cause all my problems until I started learning more about my diagnoses, but by now I'm also getting tired of doctors who can't see what's in front them because they've already decided to blame everything they can on smoking.
Years ago I tried to make my doctor a deal that if they'd get the infection off me that seems to go crazy every time I cut back on tobacco, I'd gladly try again to quit, but they never lived up to their end of the bargain, they didn't even try. It took years to even get an antibiotic out of a doctor for it, that only finally happened a few months ago and I'm not sure the doctor is choosing them very carefully since the infection I was given them for doesn't seem any better. Usually doctors read up on the disease at the Mayo Clinic and get talked out of thinking there even is infection after they diagnosed that very thing themselves. Mine wouldn't let me have antibiotics once that happened, but that heavens that the new doctor believes his own eyes that there really is infection.
Believe me, I have lost a lot of faith in the "party line" about any disease over this, after seeing the way I've seen doctors take bad information and keep passing it on without even thinking, and as many times as the research that doctors depend on for guidance turns out to say the opposite of what the doctors are saying themselves.
So yes, I know I should quit and I have plenty of motivation, but I haven't been having an easy time of it. I just don't want to try to quit because a doctor has promised me that everything will get better if I do, because that hasn't been the way things have worked. My dad went through this same kind of thing even years and years after he'd switched from smoking to chewing tobacco, it's not quite as easy to blame his troubles on inhaling tobacco smoke. I'd still be as happy to quit just because it's too expensive, but we'll have to what happens in the next few weeks with the doctors.