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I wouldn’t dismiss your claims, but I’d have some questions. First, have you had genetic testing to confirm that you have CF? If so, then that completely rules out a misdiagnoses of something presenting with a similar set of symptoms. Second I’d be curious what form of the disease you have, since that make make your experience different from someone elses’.

Concerns I’d have with accepting your theory about CF as it applies to people other than yourself (I’m not doubting your own experience) is that mucus and pus are fundamentally different, and this has been studied. For example one area of study is using various drugs to break down a key component of mucous called mucins, and this is based on assays of CF mucus. You would expect pus to be composed primarily of dead tissue and immune cells, especially neutrophils. No one is going to mistake a slide of pus and a slide of mucus, and no one will mistake a spectrograph of the two either.

In support of your idea is that the genetic basis for CF is known and can be replicated in tests, and the pathological mechanism involving over absorbing calcium and sodium ions is also known and reproduced. BUT... it’s also known that overproduction of mucus is not related directly to CFTR! What that means is that the observed overproduction is a secondary result of the underlying condition. That leaves room for the literature to be correct (probably) without accounting for all expressions of the disease. In other words you could be right, and so could the researchers and doctors.

One thing that occurs to me is that a thicker mucus as expected with CF might still create the perception of dryness. Accumulations or blockages resulting from it would be the result of overproduction, but still lead to poor “delivery on target” so to speak. It doesn’t help if one’s vagina is effectively dry because instead of producting a slippery material, an overly viscous substance is produced. Maybe in some people the net result is a lack of mucus where it needs to be, spread around, and resulting infections. It could be that the prognosis for people with a form less associated with overproduction also leads to a better prognosis, because it’s fundamentally an easier problem to solve than other forms or expressions.

It’s an interesting idea, although I’m sorry that you have to live with it.

Thank you.

First, have you have genetic testing to confirm that you have CF?

Unfortunately, no. I have had two or three blood tests that indicate I do not have any of the 100 most common alleles. Last I checked, there were 1600 known alleles. My insurance denied my CF specialist's request for a more comprehensive (and expensive) test from Stanford.

I was diagnosed with atypical cystic fibrosis at age 35 based on sweat chloride results and medical history.

My sweat chloride results were 41, as were my oldest son's. My understanding is that historically, below 40 was normal and above 80 was CF. The numbers in between were an undefined grey zone. At some point, they decided that this grey zone was a milder form of CF.

At the time that I was diagnosed, the life expectancy for CF was 36. I was diagnosed just before I turned 36.

So logically I shouldn't have any of the more common alleles. Those alleles really should result in a case of classical CF and have a more severe presentation.

My best understanding is that I have the same pattern of issues as classical CF, just less severe. The lessened severity combined with a late diagnosis meant I had my own mental models for what was going on with my health and allowed me to question what doctors were telling me.

Because CF is so deadly, most people with a diagnosis are terrified of questioning what they are told. I stopped participating on CF lists because they aren't places you can have a meaningful discussion of the science.

I've talked to a guy with a PhD in chemistry and a guy with a PhD in biology to help me understand a few things about how CF functions at the cellular level without having to deal with histrionics and hatred from people terrified of questioning the current mental models.

One thing that occurs to me is that a thicker mucus as expected with CF might still create the perception of dryness.

Mucus is supposed to be slippery. You can have thicker mucus from being dehydrated. Or it firms up to trap invaders.

If it is thick, it is either trapping something or it's incorrectly formulated. It can't do it's job.

People with CF are chronically infected. Logically, thickened mucus is a reflection of a high load of infection, at least in part.

it’s also known that overproduction of mucus is not related directly to CFTR! What that means is that the observed overproduction is a secondary result of the underlying condition.

I think most of what we think of as CF is really secondary, tertiary or further downstream effects.

If we had a condition called Pale Skin Disorder where you were chronically sunburned to the point of being at high risk of dying from skin cancer, you would have a lot of symptoms that aren't per se inherent to having pale skin.

If you are chronically infected your entire life and chronically malnourished your entire life because people don't know how to address issues with the CFTR, this will have consequences that aren't per se due to the defect in the CFTR.

No one is going to mistake a slide of pus and a slide of mucus, and no one will mistake a spectrograph of the two either.

No, of course not. But at what point does mucus become phlegm? How chemically deranged does mucus need to be before it gets recognized as not normal, healthy mucus? How many microbes does it need to contain to be considered some kind of drainage due to infection rather than mucus?

Phlegm is not pus. But they are both a form of infected drainage.

I don't have the language I want for the ideas I have, in part because I generally don't get meaningful engagement.

I'm trying to make a distinction that's clear in my mind.

When I'm adequately hydrated and have enough salt, etc, my mucus membranes are moist and I'm less infected.

I no longer have vaginal dryness either. I spent some time waking up worried that my period had started because dry was the norm. If it was wet, I was bleeding.

That fact did not prevent me from having vaginal discharge, including from frequent yeast infections. I no longer get yeast infections either.

Sad that this is getting down voted. Science is wonderful, and it's behind many incredible breakthroughs in modern technology, obviously.

But in my book, logic beats science every time. You can point to all the studies in the world, but if they conflict with my own literal experience, I am going to be at the very least skeptical of the science.

Thank you.

I wish people would actually engage me on the logic rather than acting like I must be crazy and making things up while they pretend such assumptions aren't some form of prejudice.

I'm starved for actual meaty engagement on such subjects. Like explain to me why you think I'm wrong instead of telling me I hallucinated my entire life and if I really do have CF and I really am getting well, it's 18 years of placebo effect and I couldn't possibly know what I'm talking about.

Fear me. I can apparently hallucinate my body into better health. Up next: Darth Vader Force chokehold, clearly.

You’re very articulate and it all makes sense. Science is about building better models and explanations of things which can be observed. It’s not about simple hypothesis testing. Read The Beginning of Infinity by David Deutsch if you’re interested in this subject. Please ignore the anonymous HN dilettantes.

Reading other replies to your original post is alternately enlightening and incredibly frustrating. So much armchair crap from people who have clearly never encountered anything outside of established science and so refuse to believe that anything outside of established science can exist! As if established science were somehow virgin birthed into existence, and not built upon centuries of painstaking observation and analysis.

Especially considering your form of CF is atypical, you'd think researchers would be tremendously interested in identifying a possibly conflated disease that presents with the same symptoms.

It's definitely very frustrating. In the good news column, this discussion is the most meaty engagement I've ever gotten and I'm generally pleased with this unexpected turn of events.

I think the most charitable reading I can give is that when I was much sicker, I tended to do a poor job of trying to present my case and "you never get a second chance to make a first impression." Hopefully the silver lining is that some people will recognize how much my writing has improved over time and will see my past typo-filled and often not very coherent posts as compared to later ones as evidence that my claim that I was very sick at one time and I've gotten healthier holds water and makes sense, even without ever meeting me in person.

Because this smacks of the same logic that people use to deduce things like "homeopathy works." Develop a hypothesis. Find a few people on the internet who support it. Badah bing badah boom you are now a quack.

The big problem with the GP's "logic" here is that, at least according to cursory googling (the best kind!), plenty of women with CF do report having thick vaginal mucous. Any doctor will tell you that a given disease can present many different ways. It's a terrible idea to reason from your own personal experience with a disease to how the disease works in general.

Except you have it backwards. I didn't develop a hypothesis and look for a few internet people to support it. Instead, I did what worked and then tried to understand why it worked.

Thick mucus tends to be poor quality mucus. Mucus is supposed to be viscous. Women self reporting on vaginal mucus also fail to distinguish vaginal "goopiness" from mucus.

This is why i paid attention to anecdotal evidence that lack of vaginal mucus was ruining their sex lives. This was pretty uniformly reported.

It's possible there is some sex worker or fetish club member out there with CF who has sex with multiple men every day and is just not admitting it for done reason. But I spent several years on multiple CF lists and the consesus was CF causes vaginal dryness and this harms women's sex lives.

Your casual dismissal also fails to explain how an excess of mucus causes a compromised immune system. It seems obvious on the face of it that a lack of healthy mucus would be a problem because an important element of our immune system would basically be missing.

Mucus is a gating system. It's like saying "We have too many illegal immigrants in this country because Trump not only built his wall, he made many layers of fencing to go with it, which makes it easier than ever for them to get through. It was better when there was no wall. That did a better job of keeping them out."

(Not intended as political commentary. Hopefully just a readily relatable example of logic fail -- more fencing should not be worse for keeping out unwanted invaders.)

I'm sorry, but no matter what you say, your experience on forums is not going to move my priors very much. Plenty of people hear plenty of things on forums. It's not an efficient way of obtaining reliable scientific knowledge. Every other person has their pet cause where they know better than doctors because they did X or Y and it helped, and they found other people on the internet who agreed with them. It's a common story, and 99.9% of the time it's incorrect.

People don't engage with you on this because it's pointless. You're not going to convince anyone who isn't predisposed to accepting your story, the same way a religious person who claims a divine experience isn't going to convince anyone who doesn't already want such a story to be true. In the same way, me telling Paul that he was probably hallucinating on the road to Damascus because he was dehydrated is not going to make him stop preaching the word of god. You don't have good evidence to present, besides hearsay about other internet people's anecdotal experiences. Read that last sentence. That type of thing is about three or four degrees removed from solid evidence. Surely you can understand how unconvincing this is going to be to a disinterested third party?

Emphasizing how very much you are convinced I'm hallucinating is not an explanation for how too much mucus makes more logical sense as an immune system failure than too little. It also cites zero sources.

Also, if you are so disinterested, why waste any time replying to me? If I'm a nutter, downvote, flag and move on. Let someone else talk to me who doesn't think I'm a total waste of their time.

You asked in another part of the thread why people are downvoting and not engaging. I explained why I downvoted, and why, if I hadn't engaged, that would have been. If you don't want the answer, don't ask the question. Also, I find myself congenitally unable to let anti-scientific behavior go without comment when it comes before me.

I don't know enough about CF to know why it works how it works. But I do know enough about science and have enough experience with people with "unique" theories of disease to know that almost always, the prevailing scientific wisdom is less wrong.

I don't think I asked that. I think someone else commented on the downvotes.

I'm just making the observation that you are being incredibly dismissive of me while not actually engaging any of my points.

Probably, I shouldn't have replied to such a dismissive position to begin with. The problem being I mostly get dismissive replies that don't take me seriously, so such a policy would have me not talking on HN at all, basically. And I've got no place else to go. HN is the least worst option for trying to find someone to talk with about such subjects, which happen to be a thing my very life basically depends upon. So I'm a tad stuck.

I don't know enough about CF to know why it works how it works. But I do know enough about science and have enough experience with people with "unique" theories of disease to know that almost always, the prevailing scientific wisdom is less wrong.

This was added after I hit the reply button. The word for this paragraph is "prejudice." You aren't actually qualified to rebut anything I've said, you just assume I'm a nutter because there are a lot of nutters in the world.

I refer you to Semmelweis:

https://en.m.wikipedia.org/wiki/Ignaz_Semmelweis

Yeah that was me. And I think you're totally blind to the way that scientific studies only provide additional proof to things that we think we know intuitively. Where do you think a hypothesis comes from? Observation.

Also, the amount of science that gets turned over due to conflation for example. A disease looked like one thing but turned out to be many things that looked similar (cancer). Science is constantly evolving, it's never fixed and finished. Please don't use existing science as a weapon to beat others over the head.

Also, applying your personal observations about people being right and wrong to someone you don't even know. Doctors and scientists aren't a priest class, they've just learned and had more experience than most, and typically only in their own specialties. They are often wrong, being human. And the best ones admit that there is a LOT they don't know.

Also, assuming you know much, or anything, about a topic you probably don't. Don't you think GP has spent more time than your cursory Google search? That you'd act otherwise is illuminating. What exactly do you think qualifies you to disagree here? OP is providing anecdotes, but you're providing... nothing.

Regardless of any of the above, please don't dismiss other people's experiences just because they fall outside some canonical realm (and I'm sorry if this sounds hypocritical after a somewhat rude post) because that's how science turns into religion.

Phlegm is mucus produced by lung tissue. And your lungs (or vagina) being filled with pus would be a very different thing.

My point is that phlegm is akin to pus in that it is drainage due to infection. It is not "normal" mucus.

Women routinely have vaginal discharge of various sorts that is not normal, healthy mucus. The fact that women with CF have both substantial vaginal discharge and vaginal dryness severe enough in some cases to "ruin" their sex life strongly suggests that there is a difference between what is produced in quantity by the mucus membranes of people with CF and normal, healthy mucus.

I'm saying that difference is that it's a form of discharge due to infection, not an overproduction of mucus per se. If it were the same thing as mucus, women with CF should not be simultaneously reporting vaginal dryness that interferes with sex and vaginal discharge.

You're saying then that women with CF have a persistent, chronic, but undiagnosable infection.

Note that if, as a medical researcher, one managed to identify an underlying causal agent for CF, that would be career changing.

Also, your vaginal dryness theory is only true if CF-related discharge works as a responsive lubricant. That could be, as you suggest, due to a difference in kind, but it could also be a change in composition, differential overproduction, or a complex interplay of several other factors.

Medicine agrees that all people with CF are chronically infected. That part is not some novel theory on my part.

I don't have a vaginal dryness theory. My point is that CF is genetic and impacts all cells of the body. The way it works vaginally and in the lungs ought to be consistent. Women with CF consistently report vaginal dryness. They also report vaginal discharge. This discharge appears to not be mucus, given the rest of their testimony.

The reports of women with CF concerning their reproductive tract should cast some light on lung function and is not consistent with prevailing theories that people with CF are "drowning in their own mucus."

There's a difference between chronically infected (which is true) and that the source of CF is an infection, which is the part of your theory that's unsupported.

"the way it works vaginally and in the lungs ought to be consistent." - not necessarily, and especially not when you're describing symptoms (vaginal dryness resulting in uncomfortable sex), because the mucous of your lungs and sexual lubrication serve very different purposes.

And other symptoms of CF in women, such as more difficulties conceiving, are consistent with mucus overproduction.

The discharge might not be mucus, but that doesn't mean that's not the root of what CF is doing.

and that the source of CF is an infection, which is the part of your theory that's unsupported.

I don't think I've said that anywhere and that's not what I'm trying to say.

CF is a genetic disorder. It's root cause is a malfunctioning cell channel, the CFTR, that is defective due to a genetic defect.

But I do think a lot of what we think of as CF is really a consequence of being sick and malnourished your entire life. If those issues can be addressed, outcomes can change.

Having more difficulties conceiving is also consistent with uncomfortable sex.

I found this article [1] that seems pretty consistent with the dehydrated mucus hypothesis. I don't know if it's reputable, and I only read the summary, because it quickly got over my head.

[1] https://insight.jci.org/articles/view/89752

I haven't paid much attention to the reproductive issues typical for CF, but I'm sure they are more complicated than thick mucus. IIRC, something like 97% of men with CF lack a vas deferens and are thus unable to deliver sperm when they ejaculate.

I think there is a lot more going on with CF than lack of adequate mucus. I was merely trying to provide a fairly straightforward example of what seems like an obvious error in logic for a biology mental model.

Since mucus has an immune function and people with CF have a terribly compromised immune system, the assumption that we overproduce it seems flawed on the face of it and fails to be consistent with widespread reports of vaginal dryness.

Thank you for the link, but this kind of argumentation is usually not helpful.

"The immune system" is not actually a single system. It's entirely possible for a condition to cause both the overproduction of a single aspect of the immune system and also harm your general immunity overall.

This is no more a failure of a mental model than the fact that autoimmune diseases, which also involve a heightened immune response, can leave people more vulnerable to certain infections.

But, as noted elsewhere, I don't particularly think this exchange is going to leave either one of us content. I wish you the best in finding a treatment that works for you.

"The immune system" is not actually a single system.

I'm well aware of that fact.

I'm not really a fan of the entire concept of autoimmune disease. There are things that go on with CF where they also claim that "overreaction" of the immune system is a factor, though I can't recall a specific example because I left all the CF lists years ago. I don't think ideas like that are helpful, so I made no effort to remember the specific examples.

Cystic Fibrosis is a misnomer rooted in an older mental of the condition which has since been abandoned. It was descriptive of the state of the pancreas in autopsies of people who died of the condition. I think in French they call it mucoviscidosis, which would be medically more accurate.

We have a terribly poor understanding of a lot of medical conditions. "Gulf War Syndrome" just meant you were sick in some mysterious fashion and had served in the Gulf War. Last I checked, they had distinguished three different syndromes, still without identifying an exact cause.

Malaria just means "bad air." It was so labeled because of it's association with swamps. It was only later that it was determined to be due to a parasite where mosquitoes are the vector.

Medicine is shockingly imprecise and organic and a lot of fancy labels in medicine are not as informed as laymen sometimes assume.

When I was asking a former RN one time "So, what exactly does this medication do at the cellular level?" She told me "We don't actually know. That's not how studies are done. You are asking questions that medicine can't answer."

But, as noted elsewhere, I don't particularly think this exchange is going to leave either one of us content. I wish you the best in finding a treatment that works for you.

What I'm doing for my health is working remarkably well. As stated elsewhere, I'm not seeking agreement from the entire world. I'm seeking meaty engagement. So I've been quite content to talk with you, overall.

But you have zero obligation to engage me further. Have a nice (whatever time of day wherever you happen to be).

"Having more difficulties conceiving is also consistent with uncomfortable sex." - Difficulties exist in women with CF who don't report pain during sex.

I did not realize the degree to which I suffered vaginal dryness until I was like 40 or something. Vaginal dryness was my "normal." I didn't realize it was quite abnormal.

I generally did not have pain during sex because I got married at 19 to my "high school sweetheart" and he and I accommodated my vaginal dryness without making a big deal of it and I didn't realize how much we were doing to accommodate it until after I finally had a diagnosis and was getting divorced. It was our "normal" and we were oblivious to the fact that it wasn't normal at all because neither of us had much experience prior to getting together when we were both 17.

So I will suggest that lack of reports of pain during sex may say more about a woman's sex partner than about how much vaginal dryness she is experiencing.

That's possible - but there's also a perfectly explainable mechanism of action (thickened cervical mucus) that doesn't involve you dismissing the experience of other women who don't report vaginal dryness as a problem but do statistically experience lower rates of successful conception.

See, I wasn't dismissing anything. I post as openly female on an overwhelmingly male forum. I routinely try to add information to the discussion that seems unlikely to occur to most men.

I said in another comment -- one you replied to, so presumably you read it -- that reproductive issues in CF are likely more complicated than just this one factor, so I think this characterization of my remark is completely unfounded.

Phlegm is mucous of the respiratory system, by definition.

Vaginal anything can't be phlegm for that reason.

Not to take anything away from the rest of your post; dealing with an idiopathic condition that your doctors don't understand must be very frustrating. Best of luck.

I'm aware that the vagina does not produce phlegm, which is why I added the word pus -- which someone else felt the need to correct and inform me phlegm and pus are not the same thing.

Both replies appear to assume that I don't know what I'm talking about. This is the norm: I'm a former homemaker, so I must not know anything medical.

I'm human. I make mistakes. I'm not a doctor and I don't speak like one.

However, I also have a certificate for "Certified life and health insurance specialist" that I got as part of my job at Aflac where I read medical records all day as part of my job. Among other things, the certificate program covered medical terminology and some basics of health and biology. For example, I had to know the different bones in the body because I paid accident claims and a broken hip paid different from a broken arm, etc.

I'm not a medical professional. But I did have a job for over five years that required me to be able to comprehend medical records and surgical reports well enough to decide how much money to pay people for their medical treatments for covered health events.

The rumors that I'm merely an uneducated former homemaker are a tad exaggerated.

I'm not trying to give you a hard time. This is just a long-standing pattern of how people reply to my comments.

Phlegm is mucous of the respiratory system, by definition.

Also, while we are all being pedantic here:

Mucus vs mucous

https://grammarist.com/spelling/mucous-mucus

Mucus is a noun.

Mucous is an adjective.

And I'm adding that because both you and the other person "correcting" me used mucous when you meant mucus:

https://news.ycombinator.com/item?id=18945575

One is a typo, the other a factual error.

Vaginas don't produce phlegm, period, and never will.

I don't know you from Adam, I have no idea about your past and also don't care much.

In this one, specific instance, you do not know what you're talking about. Pouring half a page out doesn't change that.

There's no need to be defensive about it, or take it as more than it is. This is HN. Mistakes get pointed out.

I spoke of both vaginas and lungs. Your assumption that I think vaginas produce phlegm when I provided two words -- phlegm and pus -- is the only error here. I have never thought vaginas produce phlegm and I don't understand why you think I do since I don't think that's a logical interpretation of anything I said.