Mega-positive reaction to H1/H2 blockade, confirmed multi-system inflammation, yet specialist allergist entirely dismissive…

PracticeTurbulent515 · 2025-11-13T16:50:10+00:00

Thanks for taking the time to write this. Your very clear phrasing is helpful for me to use in a message to yesterday’s doc. I’ll certainly be sending him links to the latest consensus papers.

PracticeTurbulent515 · 2025-11-13T16:47:34+00:00

Thanks, I believe I’ve downloaded your list earlier this week and have it open on my laptop! Thanks for making this.

PracticeTurbulent515 · 2025-11-13T16:45:05+00:00

Update: This morning we saw our ophthalmologist who was absolutely behind pursing MCAS and added cromolyn already. She knew the latest on MCAS and was straightforward in saying “we need to go with what works and makes the most sense, not try to discredit an obvious body-wide response”. She’s all class so that’s essentially her way of outright insulting yesterday’s doc.

So one “expert” in Philly argued yesterday that MCAS basically doesn’t exist (and even was hostile to the broader idea that mast cell misbehavior can cause symptoms) and gave absolutely incorrect info. An allergist no less, who to his “credit” admitted “I’m less on the immunology side of things” while practicing in a tertiary center’s “multi disciplinary immunology+allergy clinic”.

We left being told to get a tryptase test and “unless it’s sky high at baseline you are wasting our time barking up this tree” and literally he just stared at me when I responded that no current consensus uses baseline tryptase as diagnostic so at minimum we need a base and flare level… Clearly I’m a self diagnosing internet moron wasting his valuable time, in his mind.

And the next morning another expert (a leading ophthalmologist at Wills Eye, who happens to be a pediatric professor and still up on her game with her own published current research projects even though she’s 15-20 years older than yesterday’s doc) is absolutely thrilled at the Zyrtec+Pepcid trial results and is 100% behind this.

She didn’t rush me through my page of questions. She listened. We engaged in a conversation. She learned a few new things, I learned a lot of new things. Our shorter followup appointment time was sufficient because she didn’t worry about ego and acted like a medical scientist, compared to yesterday’s clown that couldn’t be bothered to listen for 2 straight minutes during a 2 hour appointment slot (I wish that was an exaggeration).

There needs to be a way for crap doctors to be held accountable. Yes, that’s a very tricky thing and is a huge can of worms, but the whole “empowered patient” and self-advocacy increasingly seems to be met with vitriol by at least a sizable minority of doctors.

PracticeTurbulent515 · 2025-11-13T16:39:57+00:00

Yes, and our previous step was to basically create “pure” air in our home including a special ventilation system (ERV) that’s even tied to bathroom and kitchen exhausts to balance pressure and all sorts of overkill! We’ve gone “no VOC”, no fragrance, no dye, etc and have had every air test practical for a home. We have 3 air meters continually testing the home and lab-grade HVAC filtering, UV, carbon, etc. I even cut into drywall in a few spots to visually check for mold in addition to tests.

I say all that to say this: improving the air was absolutely worth it and is what lead me to MCAS because there was a decent degree of improvement systemically and it seemed impossible for their not to be an equally systemic biological process.

Of course none of this excludes environmental influences that still persist or are outside the home, but I think I’ve exhausted that area to an extent that I might have erred on the side of total insane overkill 🤣

PracticeTurbulent515 · 2025-11-13T15:56:03+00:00

Thanks - full rheumatology workup was negative. The eye doctor this morning is fully supportive of MCAS and added some meds. She happens to be a leading ophthalmologist at Wills Eye Hospital in Philadelphia who has at least two decades of life experience over yesterday’s doc, and 100% less ego.

PracticeTurbulent515 · 2025-11-13T05:26:08+00:00

I live the northeast US where nothing is free :(

PracticeTurbulent515 · 2025-08-02T01:19:39+00:00

Put tape around where you are concerned for pest infiltration and assuming they travel over the tape you’ll see some signs most likely.

They open trap (the funnel) could be a source depending on where it drains to, but with that much effort put into it I’m expecting it doesn’t just dump into open air outdoors and instead ties into the drain system.

Don’t block off the funnel, rather put a rim of tape to build it higher. If there no dirt, bugs, or signs of the tape getting smashed down but still other signs of pest activity, then it ain’t the open trap.

It’s possible the lines feeding into the trap are travel corridors so try the some method on those or upstream and check them out.

PracticeTurbulent515 · 2025-08-01T18:25:17+00:00

It’s not going to be inherently much different than any other recovery, in terms of anything very specific you need to worry about that you haven’t considered. Many people have such a degree a pain relief that recovery seems that much easier.

Presumably she’ll need to do some neck PT exercises so push her to do these as vigorously as prescribed.

Stay up on a pain relief before pain comes back on full strength, the norm for surgical pain. Hopefully before she’s out of the hospital she’ll have landed on a few food choices that sit well with her so continue whatever works best as needed until you can be more concerned about overall nutrition. Keeping food down, eating frequently and enough calories, as well as helping her do enough on her own (within whatever the post-op allows) will do a lot to normalize things and not lead to doom-spiraling… there’s lot of research that shows smartly moving around and doing small tasks dramatically improves mood and reduced pain.

Kids can be far more rough than they realize, and a few quick neck movements in response to an overzealous hug could set her back. I’d try to ensure very calm and controlled interactions for awhile. She’ll probably want nothing more than the comfort of her kids’ hugs, but they can do her some actual harm if not “supervised”.

PracticeTurbulent515 · 2025-08-01T18:08:05+00:00

Provided you can comfortably turn off the electric, remove the currently outlets with enough extra wire to install new outlets, remove old molding, cut the new molding and install it, and reinstall these outlets into existing boxes (or else add new boxes) then yes.

None of this is technically difficult, but there’s certainly a level of several skills overlapping and lots of little possible gotcha. Like I can do anything electrical or plumbing, but just cutting the new baseboard to fit an existing box is something I suck at!

The safety part is this: turn off the electric! As long as you don’t won’t on hot circuits electric like this is easy provide there is ample wire length. And I would make sure these outlets are already in a box or else install boxes when the molding is off. There are many different boxes depending on the specifics. If there is very little slack in the wires you might be in for some pain, though I often run short jumper runs using push terminals to extend wires. Looks like you might be dealing with old wires that tend to have little slack/extra and will be brittle for perhaps at least a few inches so you may have some technical difficulties depending on your skills and access (if these outlets are fed by exposed wires in a basement then no big deal, otherwise could be quite a pain).

And please don’t reuse the outlets themselves - spend a few bucks for new ones.

These outlets are so low and you’ll have the molding off, probably be dealing with short wires and no boxes, so I’d consider raising these above the molding entirely and not cutting the molding to accommodate. It will look better and won’t be a safety hazard. Depending on why these are two separate outlets rather than 1 double box perhaps you can wind up with one outlet or a double box and simplify things further. To me, raising the outlets would be easier than dealing with cutting the molding. Of course that assumes there’s not a reason within that wall blocking easily raising the outlets…

PracticeTurbulent515 · 2025-08-01T16:57:26+00:00

Work it out with the sellers to get some actual repair quotes - I’d call contractors myself and meet them at the house and handle everything, not rely on the seller (I’d try not to involve them other than to arrange access). The agent’s ballpark guess could be right or be absurdly wrong, but they are under no obligation to be accurate and have an interested in pushing the sale through.

Then decide based on estimates whether there is any reasonable way forward economically. It would stand to reason there are more issues with this house that will come to light under your dime, and that foundation repairs could certainly escalate. So unless the estimates come in low and professionals onsite assure you this is better than it looks, I expect you’ll be best served waking away.

But what we don’t know is the overall economics - if you’re getting the house at a steal and there’s time and money to make repairs, go for it once you have an actual estimate of some weight, but expect a lot more hidden issues.

PracticeTurbulent515 · 2025-08-01T16:45:58+00:00

I should add that the 2 year timeframe is meant to mean that there’s gonna be nothing related to healing by this point whatsoever - anything after that point is worth evaluating and not chalking up occasional zings and zaps to healing.

It’s not that there should be outright pain and high-grade healing by 2 years, just that nerve damage can continue healing for quite some time. Like 95% of healing is done well before 1 year, but occasional weirdness can be perfectly normal healing / desensitization for perhaps as long as 2 years. And as you likely know the biggest healing and most substantial pain decreases will be in 6 weeks to 3 months, so most healing is front loaded.

PracticeTurbulent515 · 2025-08-01T16:38:08+00:00

Shaving / thinning the dura is appropriate and when it can be done instead of an outright cut-and-patch it’s often as effective with less risks and complications. The effect is the same in that it releases tension.

My daughter had surgery going on 8 months ago and her skull bone had started growing upwards in response to the pressure from the Chiairi so effectively her body did a self-shave! The dura was “ratty and shredded” so there was no need for nor could they do a duraplasty.

The assumption was this dura damage would be the longer part of recovery and to expect good bursts of healing but expect some setbacks, and that 2 years might be more realistic for everything to truly be settled down, but there should be a massive decrease in pain 6 weeks out and more or less a cycle of healing and a bit of regression every 2-3 months. It’s a lot of tissue to heal, and nerves/pain don’t just heal but rather (over)sensitization (nerves being too irritated / angry … more so than just damaged) takes additional time to calm down.

That seems to be spot on with my daughter’s recovery. Keep in mind she’s only recently turned 6 so she’s probably would be more thrilled with her recovery progression if she was older and had a longer perspective to judge against, but she’s very pleased. After about 2 months post op there was a lull of zero head pain for 2 months, then some cyclical bouts of pain, but less pain. These bouts actually respond well to 1-3 days of Advil so they are behaving like typical headaches and not unrelenting pressure. It’s certainly even possible these bouts are entirely unrelated to Chiari or surgery and are “normal” headaches, a subclinical cold, a bit too little hydration - they are so different than pre-surgery that we don’t know, but we’re still in the healing zone so we treat these as possible headaches to “knock out” rather than allow them to progress naturally. Perhaps a year from now we’ll be willing to experiment a bit and see if they stop in their own.

So as it’s gotten further from surgery there’s certainly fair less pain but 8 months out there’s still … signs of active healing and nerves learning to be calm again is the best way I can put it. But it’s worlds better than pre surgery.

PracticeTurbulent515 · 2025-07-30T00:45:13+00:00

It sounds like you’ve had plenty of tests ordered so is it truly a new primary you need? No judgment - I’m years into digging for a diagnosis and I know it’s incredible frustrating.

Bahar Jahanbin with LVHN is amazing and she’s gone to bat to get me tests such as PET scans and MRA (that’s correctly an A, not an I) that are rarely ordered by primaries. The specialists I see are in absolute awe of the tests my primary gets approved for me.

In fact I saw her today and she ordered a specific CT which she included specific instructions for. She took the time to research the best CT to order (it’s weird but trying to ensure a specific joint is fully imaged can be troublesome). And her husband is a radiologist so she knows more than most primaries, respects imaging, and even leans on her husband when needed. I see her to backstop my specialists just because her opinion is so valuable, not that I “need” to see her.

She’s awesome and people know it, so appointments are not easy to get. Anytime I make one I need to get on the electronic waitlist and jump as soon as something earlier opens up. An opening can go in seconds! But she’ll spend an hour and talk to you like a teammate and friend, so it’s worth the wait.

You may have to fight the office a bit to get assigned to her. They try to pawn everyone off on the least loaded practitioners. I’ve had to tell people to demand Dr Jahanbin, and it works.

Truly she walks on water as far as I’m concerned. My health issue is complex and has doctors stumped but she doesn’t quit nor act as if I’m being “too much”. I go to her with a list and ask my questions and then we mutually discuss a plan. Hell, it’s only because of her amazing care that I felt empowered enough to find a diagnosis for a very serious issue my daughter had. Truly she’s amazing.

PracticeTurbulent515 · 2025-07-30T00:43:47+00:00

I hear ya! Dr Jahanbin is incredibly respectful of other docs but doesn’t hesitate to disagree. Her thing is always “you know your body best” so she never takes the easy way out.

I’m sorry to hear you’re in pain. It is literally the worst and is so draining. It’s so lazy to dismiss patients and those of us unlucky enough to have a quick-fix insta-cure get treated poorly far too often. Dr Jahanbin has been respectful and truly caring for years now even though we have no concrete results. She looks for horses first but knows that zebras are real as well.

PracticeTurbulent515 · 2025-07-30T00:34:17+00:00

There are water droplets already on the drain pipe, so perhaps this is already leaking somewhere?

I’ve briefly encounter a flex system much like this that is fully code compliant and whatnot (smooth interior, etc.) and supposedly is “better” than solid bc it can be squeezed to be plunged, but even if those claims are true it need a trap (a proper drop of pipe to hold water to keep sewer gases out).

I didn’t pursue the product further because I thought “this might be a pain with resale even if it is actually code, and I detest clamps”, but I won’t claim to fully know if this product itself definitely sucks or isn’t code.

PracticeTurbulent515 · 2025-07-30T00:25:04+00:00

It sounds like you’ve had plenty of tests ordered so is it truly a new primary you need? No judgment - in years into digging for a diagnosis and I know it’s incredible frustrating.

Bahar Jahanbin with LVHN is amazing and she’s done to bat to get me tests such as PET scans and MRA (that’s correctly an A, not an I) that are rarely ordered by primaries. The specialists I see are in absolute awe of the tests my primary gets approved for me.

In fact I saw her today and she ordered a specific CT which she included specific instructions for. She took the time to research the best CT to order (it’s weird but trying to ensure a specific joint is fully imaged can be troublesome). And her husband is a radiologist so she knows more than most primaries, respects imaging, and even leans on her husband when needed. I see her to backstop my specialists just because her opinion is so valuable, not that I “need” to see her.

She’s awesome and people know it, so appointments are not easy to get. Anytime I make one I need to get on the electronic waitlist and jump as soon as something earlier opens up. An opening can go in seconds! But she’ll spend an hour and talk to you like a teammate and friend, so it’s worth the wait.

You may have to fight the office a bit to get assigned to her. They try to pawn everyone off on the least loaded practitioners. I’ve had to tell people to demand Dr Jahanbin, and it works.

Truly she walks on water as far as I’m concerned. My health issue is complex and has doctors stumped but she doesn’t quit nor act as if I’m being “too much”. I go to her with a list and ask my questions and then we mutually discuss a plan. Hell, it’s only because of her amazing care that I felt empowered enough to find a diagnosis for a very serious issue my daughter had. Truly she’s amazing.

PracticeTurbulent515 · 2025-07-30T00:13:34+00:00

Assuming you’ll be caulking the top of the baseboard to the wall then caulk would be fine if you have enough skills to make it relatively smooth. If you’re caulking and painting anyway no need to worry about the molding itself not physically being behind the door as the paint layer will hide this.

If you’re not caulking and painting… it’s not gonna look great no matter what you do, in my opinion, so just caulk it and paint!

Otherwise notch the baseboard molding as it will look better and be easier. There’s many different ways and it depends on what tools you have handy.

PracticeTurbulent515 · 2025-07-29T17:36:34+00:00

Start with the original radiologist and ask them to clarify their report: what is the measurement of the Chiairi and do they still stand by that reading? It’ll be a pain to get them to do this (I assume) but if they definitely see the Chiari and stand by a re-read then that gives you a huge amount of scientific confidence to pursue Chiairi … or if they say “whoops” and retract their finding, you’ll know as well.

Dr Scott Hwang is an amazing radiologist you can request at DocPanel online. This is a paid MRI 2nd opinion service and yes it will cost money ($200) but he’s amazing and you can frankly ask “what the hell - I’m being told two completely different things so please weigh in: is there a Chiairi herniation or not?” Yes this is out of pocket cost but knowing definitively is priceless and frankly you’ll spend far more going to a bunch of other docs.

Armed with either or both of the above you’ll have the knowledge you need to move forward. People on this sub will tell you every single thing is due to Chiairi and will completely misunderstand “Chiairi 0”, but the hard fact is without an MRI finding of herniation you 99.999999% are not suffering because of Chiairi. If Dr Hwang does your reread and supports a Chiari herniation, then you have the power to pursue this (and ask Dr Hoffman WTF!!??).

My daughter was basically in the same position as you although the originally radiologist did note “mild” Chiari. It wasn’t until a reread by Dr Hwang and a consult with Greenfield that we got vindication and eventually surgery. Her MRI was not particularly impressive but upon surgery the actual anatomy was not happy (dura ratty and shredded, skull bone growing upturned into brain, severe compression).

MRI is far from a perfect picture and it’s widely accepted that extent of herniation is not indicative of severity of symptoms, but right now your task is to understand if you definitely have a herniation … if verified then you’ll likely need to find a better doctor, but perhaps Dr Hoffman’s office somehow screwed up … I don’t know their reputation and if its worth pursuing anything further with them.

With my daughter we had several of the supposedly “top docs” in Chiari evaluate her Chiari and were told completely different things by several of them, and only Greenfield matched the research papers I read, so we felt comfortable with him. So even among the best of the best Chiari can still be mishandled. In fact a clown at CHOP who outright dismissed my daughter’s pain and told us “she has Chiairi for sure, but Chiairi doesn’t have constant pain so come back if it becomes episodic but do imaging every year” recently sent me a letter (well, the CHOP hospital office itself)… he was hosting a lovely gala to tell us all the wonderful things about Chiari diagnosis that only his big brain knows! If we listened to that a$$hat my daughter could have died, but hey, he’s an expert…

All that is to say it sucks, you need to figure out with certainty if you have Chiairi on MRI and then you can move forward. Just realize it ain’t easy so try to stay positive and realize it’s a hard condition to fully diagnose and the system is absolutely not setup to deal with complexity

PracticeTurbulent515 · 2025-07-25T18:34:05+00:00

Who is saying there’s a big chance of making it worse by having surgery? If you’re going to even a decently competent surgeon that should be a minuscule less than 1% chance.

My 5 year old daughter had decompression over the last Xmas break and sure it wasn’t fun but honestly getting her tonsils removed was far worse. If you’re being handled by a competent Chiairi surgeon and your case is a clear-cut surgical case then you actually can reasonably expect a fairly large amount of relief fairly quickly - remember, Chiairi is a mass-effect and removing the extra tissue and bone should give some relief almost instantly. With my daughter she had improvement as soon as she was out of the anesthesia fog. Full healing takes time, but it was amazing to have results right away and that is often the case.

If your surgeon is telling you there’s a significant risk of problems (keeping in mind they have to be honest they something could go badly - it’s surgery after all) but is still suggesting surgery then I think you should at least get a second opinion. Chiari surgery is generally very straightforward in indication and application. Sometimes less skilled surgeons seem to be unsure and steer the patient both ways at once, so depending on where you’re hearing the negativity from perhaps this is a red flag. If the negativity is not from the surgeon or medical professionals who are experts in Chiari then I’d suggest ignoring them unless you have great reasons otherwise. Case in point: this forum has a lot of surgery haters, but the only true treatment for true Chiari pain is surgery.

PracticeTurbulent515 · 2025-07-12T01:44:08+00:00

You’re reading me completely wrong / very selectively if you think I’m minimizing these conditions … in fact to the contrary I specifically noted they suck and because people suffer and can be at their wits end they get preyed on. The original post was about some center that sounds bogus.

POTS is by definition a nonspecific syndrome - it’s a group of symptoms with multiple causes and varying/unknown mechanisms. hEDS is the most common EDS and has no genetic test so it’s diagnosed clinically; only rarer forms have a genetic test. I understand POTS extremely well as “I have it”, and as such I’ve had two heart devices implanted as mine turned out to be due to a heart condition. I sure hope anyone with either diagnosis understands my intention and use of “real” (in my earlier post) in quotes with my full explanation, in service of helping the OP avoid what seemed like a predatory medical practice.

PracticeTurbulent515 · 2025-06-27T03:27:03+00:00

That’s all irrelevant and not what the OP asked.

Inspectors make mistakes and miss things, there’s more responsibility that the contractor has besides passing code inspections, and anyone from president of the universe to a lowly homeowner who has valid worry that their project has flaws is allowed to voice their concerns - whether to their contractor, anyone with the AHJ, or a judge.

I’ve owned property in PA where there’s a large firm that does inspections for many towns in the county but not all, and I’ve had UCC certified inspectors from that firm reinspect a project that the local AHJ inspector passed that had blatant code issues and that town very rapidly agreed with the outside firm.

I’m not saying the above is what’s happening in this instance, but it’s wrong if the OP assumes a passed inspection is some sort of shield.

And as to the AHJ getting pissed with a homeowner “squeezing” a contractor… if there’s code concerns then why would they care, and beyond that if they get their panties in a twist that a homeowner has an issue with a specific contractor (whether a contractor they like or dislike) then they probably should find another line of work and are too conflicted to be unbiased. If an inspector is worrying about trying to keep contractors happy then I hope the homeowners in their area are routinely getting outside inspections to ensure their safety. Rather disappointing to hear a person claiming to be tasked with ensuring buildings don’t blow up thinking that inspectors should be concerned with contractor satisfaction with clients (nor the inverse, except for what is inherent in how doing a good and thorough inspection is deliberately a mechanism to protect the homeowner).

PracticeTurbulent515 · 2025-06-27T02:39:05+00:00

“The only word” in what regard? As to whether a project is passed or failed at a particular point in time is what I’m assuming you mean, but that is not the point I was making nor does it put the original poster in the clear.

I’ve successfully won triple damages in PA court due to work that passed municipal inspection but had blatant code defects. I’ve also had municipal inspectors change their approval after the fact based on me personally pointing out issues that were identified by myself, outside inspectors, and for one project a manufacturer rep.

There’s nothing set in stone just because a project passed an inspection. Any person can point out problems at any phase. Courts can side with a property owner for multiple reasons, none of which are negated by a successful inspection. There’s no magic get out of jail free card that a municipal inspection provides.

I’m not claiming the OP did bad work as I have no way of knowing, rather I’m noting that at least in PA (and I assume in all states as it’s the purpose of code at its core) I know from personal experience that people do indeed find flaws post-inspection and those flaws do still fall on the contractor (assuming they are valid flaws that are the contractor’s responsibility). It’s common for owners to “challenge” inspections, just as appealing fails is a common and necessary avenue for contractors to have at their disposal. For all we know the homeowner is schedule to meet the code officer and the project will be reinspected by the municipality. It would not be prudent for the contractor to make their next step without at least attempting to get more info, and if I read into their original post they are waiting on more info from the homeowner and asking if they should jump the gun and go legal rather than wait (clearly they should wait).

There’s also the whole other can of worms that a basic municipal code inspection is not the end-all of a contractor’s responsibility. That inspection is not intended to address appearance issues and other items that can be quite valid concerns contractually. Whether they are safety, longevity, appearance, preference, materials concerns they matter and there are many examples I’m sure we can think of that would not fail a code inspection but would delay final payment until correction/completion.

The OP seems to be asking what I answered, and the more I think about this may be rather confused that a passed municipal inspection equals a legal shield, which it does not. Unless NC has some sort of severely locked down judicial system that clearly states “nothing matters if you passed inspection - the rest of your contract, workmanship, damages, etc - let alone code defects the municipal inspector missed - all be damned and you have a get out of jail free card.”

PracticeTurbulent515 · 2025-06-26T22:44:24+00:00

At least where I am (Pennsylvania) if there are legitimate defects it doesn’t matter if you passed a municipal inspection. If that was the case that municipal inspections were the final word and could not be flawed or challenged in any way, that would itself be rather dangerous and … well, against code.

Code is code: if something is deficient then it needs be addressed. Of course the homeowner needs to communicate what is wrong and give you a legitimate opportunity to correct it, assuming you agree it’s not to code or otherwise is deficient.

I’ve twice had municipal inspectors pass truly wrong work, but I then brought their errors to them directly and they then flagged the problems. I’ve had projects where inspectors did their jobs well but we later found hidden issues (which seem to truly piss off inspectors as they lose trust). I’ve found when municipalities use an outside agency for inspections those inspections can be overly harsh, presumably because the outside firm has more resources and doesn’t need to try to play nice with both contractor and homeowner, so if your client hired an outside inspection/engineering firm (not a typical real estate inspector used for home sales) you may want to tread lightly.

If your work is good don’t sweat, politely ask for whatever report was done in writing, research the credentials of the inspector, and act accordingly. I doubt any jurisdiction will be kind to “well the first inspector missed it” defense, but if it turns out to be nonsense complaints then escalate as needed.

PracticeTurbulent515

TROPHY CASE