After waiting 3 months to see my old regular doctor (I'd gotten a great referral for my pilonidal cyst surgery) to see if I could get some decent bacteriological work done or get a referral to an infectious disease specialist, I got a prompt referral to the specialist who I saw today. They asked me how much I know about HS and when I asked if they were familiar with the work done at the Pasteur Institute they said no, and then proceeded to spend the next half hour quoting HS dogma at me that I know like the back of my own hand.

Nothing says "Hi, my education is about 10 years out of date" quite like trying to blame HS on smoking - and that's the second doctor in two weeks I've had the horrible task of trying to inform that when I smoke less, my HS not only gets worse, it becomes virtually unmanagable to the point of becoming a medical emergency, and that to my knowledge there has never been even a shadow of a working model of how tobacco is causing this out of all of a whole two weak efforts at it that I can even name. My regular doctor refused to believe it and I had to say, "Look, you can't tell me I don't go through what I go through". I did try to practice what I preach about trying to explain to doctors and educate them about HS, and wrote two pages of what I think are important points after reading literally everything I can find on HS (not to mention on infections that are commonly a part of HS) but I don't know if anyone ever had time to read it.

When I got to the part with the first doctor about how everything I read that's been written in the last five years about the particular infection that I think is now the dominant force in my HS, says to take nothing for granted when picking antibiotics and to get susceptibility testing to find out what works in the Petrie dish on a microbe before using an antibiotic on a patient that isn't even going to work (except to maybe create more superbugs), I get the specialist referral again like the local lab doesn't even ever bother. I still don't know what is reasonable to expect from the local lab, but I've never gotten back any usable results from them that I know of. "Sterile" swabs, unnamed "commensal" flora - for God's sake, just tell me for once what's crawling on me I and I'LL tell you who the troublemakers are if you can't, okay? Like I think they'd believe me saying that.

After actually naming who I think the troublemaking bacteria is for the specialist today, I can't get them to take me seriously - I got a bunch of garbage about how skin infections are impossible for them to treat because the human skin is normally covered in all kinds of normally harmless bacteria and it confuses them what to target. Trouble is, I had pointed out how I now have THREE different diagnoses where this bacteria turns up again and again in bacterial studies. Literature suggests it's probably invaded the walls of my circulatory system where it threatens to claim my arms and legs, but the specialist insists if it were in my blood, I'd be running a fever and this and that. I don't quite get this, it can invade the lining of my arteries, but they can't find it in the blood? Neither doctor has bothered to suggest it's most likely also living in my mouth and they could culture it from a saliva sample instead of crushing my last hope just because I'm not leaking pus at the moment (I was this morning before I left).

Nine hours riding in the car sitting on my left cheek the whole way to keep the pressure off my lesions and cysts, with my leg cramping and falling asleep every fifteen minutes because of it, so I could get a useless textbook spiel on HS I could give myself in my sleep. I ended up spending half the day fighting with my wife because I think she was ready to give up hope because of this guy, I don't think she gets that there was more he could have done if he'd listened to me instead of being a know-it-all. Of course not, she works while I sit all day because usually that's about all I feel like doing and I put my Special HS Chair in front of the computer so at least I can Google how I might get better someday instead of spend the rest of my life watching TV.

I cried half the way home because I'm so tired of this, my guess is that I've had the same infection for THIRTY-THREE YEARS NOW, and all they ever do is throw their hands in the air in surrender and whine in a respectable fashion about how this is just too hard. Then they find some way to blame me, after they ADMIT they don't know what causes and ADMIT they don't know how to cure it - I'm fat, I smoke, I don't eat right, I don't wear the right pants, I don't use the right soap, blah blah blah, as long as they can blame me. I lost 50 pounds in the fool hope it would make this go away and I wish I could do everything right just so I could watch what they blame it on next. If I could, I would.

My plan to not be confused who the troublemaking bacteria (besides coming down with my third frightening diagnosis just to get a clue) was to observe that having the same infection causing the same kinds of problems for 33 years even after all the antibiotics I've been forced to take in emergencies must be some kind of superbug, so could we please culture them and see just how super they really are? That's what you should do anyway if you're afraid of making more superbugs - what I get is they're usually afraid to use ANY for fear of making superbugs, if they do use them they never test them in the dish first, and after they do nothing for long enough and I have a dangerous flare-up emergency, then they try to wear them out five at a time just to be safe because then there isn't time to wait for the lab results anyway. They never mention how you can make superbugs with dishsoap, Pine Sol, bile, pain relievers, antiseptics, and all kinds of substances that no one is regulating, or how there can be cross-resistance between these things and antibiotics that the bugs have never even come in contact with before.

And how about that topical antibiotic he wanted me to slather on that may not even be able to reach down where the infection is? Doesn't that mean that the same infection in a part of the body where I didn't put it may be getting the kind of sublethal dose that can create superbugs? - but God forbid if I want him to pick two to go in my mouth.

As far as I know, it may not be the usual harmless commensal flora that they typically find causing diseases, so again any superbug version of them on my person might just make really great suspects for something that no antibiotic seems to have worked on for one reason or another for three decades now. Some of them may not act very super, that seems to be something that's best decided in the lab since super is usually used to refer to how drug resistant they are, not how aggressive they are, but once again I couldn't get a doctor to so much as take a sample of anything, because you know us patients, we don't know anything.

I should probably calm down before I plan what next, because I don't even know how to go back to the referring doctor without saying something that sounds horribly smart-a** at this point, "Next time could you send me to a specialist how knows MORE than me, not one who knows LESS that me?" - it's like the only superbug these people have ever heard of is MRSA, and they're probably in for some very nasty surprises sooner or later if that's how it is.

Last thing today, I say, "Okay, let me make sure I've got this right - you're insisting if I had a bloodstream infection with this, I'd have a fever? No exceptions?" and the doctor replies "No exceptions".

Okay, so there is NO SUCH THING as afebrile sepsis (I AM just making up what seems like an obvious medical term if such a thing existed) - funny how Google gives me pages and pages with that expression alone, over 1100 hits for the exact phrase "sepsis without fever," and etc. Here's one right off the top of a search

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4427211

"Conclusion: ...Age <60 and absence of fever are factors associated with lack of recognition of sepsis cases."

What? Sounds to me like lots of exceptions. What, you can miss SERIOUS sepsis for lack of fever, let alone the mild chronic sepsis I might have which might be a sizeable of what makes me feel sick every day of my life because being under 60 I may not seem as sick as I could? I'm almost afraid to look and find out if what I've been having to do manage my HS, or even a co-infection, or maybe stripping the outer membrane off it but not killing it with some other antibiotic in the past so the immune system can't recognize it and call for a fever to fight it, maybe any of could prevent fever from breaking out - and that's probably another way to create superbugs is to be out to lunch on what happens when you "half" kill something. At least this is the kind of stuff I read all the time, in actual medical articles.

What to do with that? Forward it to the specialist as an FYI and thank them for billing my insurance after doing ABSOLUTELY NOTHING for me today but be an effing know-it-all? They ALWAYS get the billing part exactly right, at least once, sometimes three times. (I wouldn't bill someone I could help, I would rather be dirt poor!) Show this to my wife and start another argument? "See? He doesn't know what he's talking about!" Do I have to show doctors how to use Google now?

Or should I just STOP LETTING THESE CLOWNS TALK ME INTO GIVING UP ALL HOPE LIKE THEY ARE ALWAYS TRYING TO DO, AND KEEP LOOKING FOR SOMEONE WHO WILL ACTUALLY TRY TO HELP FOR ONCE? Yeah, I know it's tough keeping up to date when you're trying to help people right and left. They may always know what to do in emergencies, but who are they helping with anything else if their information is consistently anywhere from 10-30 years out of date? That's why they should always ask a patient, some of us end up having to try to become specialists ourselves (I think every parent of an autistic child must not only know the methylation cycle, the methionine cycle and the citric acid cycle, but the folate-related genes too - and better than I could ever dream of, judging by the Internet).

And maybe I should be more careful what I wish for - he WAS a great listener, he just couldn't seem to hear a word I was saying even though his ears obviously worked fine...

Anyway, apologies to anyone who's followed the same advice I followed today and ended up being treated the same way I was. It can happen. It isn't supposed to, and it needs to stop.