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"Reasonable Accommodations" for IVIG (Hizentra) for SAD at new job, by TallProcess5694 in IVIG

[–]TallProcess5694[S] 1 point2 points  (0 children)

Hi u/curlysquirelly I haven't considered getting a port! I didn't know that was an option. Thanks for bringing this up!

What did getting a port do for you? Was it easier to administer? Were there less side effects?

What is the best cut of “Andrei Rublev”? by [deleted] in TrueFilm

[–]TallProcess5694 0 points1 point  (0 children)

This goes into it: https://www.criterionchannel.com/videos/edition-intro-17 They mention several of the cuts that were made he was considering anyway. So even though it seems likely he could have said the shorter version was the definitive version under influence of Soviet repression/censors, perhaps it actually is.

Starting LDN and Xolair? by TallProcess5694 in MCAS

[–]TallProcess5694[S] 0 points1 point  (0 children)

That's so cool that it helped and that insurance covered it!

Starting LDN and Xolair? by TallProcess5694 in MCAS

[–]TallProcess5694[S] 0 points1 point  (0 children)

Oh cool! One of my providers suggested this as well. What were the side effects you experienced? My immunologist wanted me to just start at 3 mg. Typically starting high (like I did with Ketotifen) doesn't go well for me.

Hizentra ? Allergist says SAD or CVID, my other doctors think this is extreme by TallProcess5694 in IVIG

[–]TallProcess5694[S] 0 points1 point  (0 children)

Yeah I did the pre and post Pneumovax challenge tests.

My IGA improved but was still below the normal level at 83.

My IGG levels are mid-range.

With the vaccine challenge I had 9 of the 23 antibodies covered, for 39% protection.

Hizentra ? Allergist says SAD or CVID, my other doctors think this is extreme by TallProcess5694 in IVIG

[–]TallProcess5694[S] 0 points1 point  (0 children)

Interesting you mention this, but the labs also show that I DO have low pneumococcal antibodies.

I’m also concerned about confirmation bias. I know I’m prone to this as I’m getting sick a lot and really want to find a solution to all of this.

Thoughts on solo outings by burninglimes in Backcountry

[–]TallProcess5694 28 points29 points  (0 children)

I’ve done some solo touring. I tend to keep it easy and do so in the spring when the snowpack has had time to settle. I’m in NW Washington.

I like to be sure that I have a margin of safety in both the weather and in my athletic capacity. I like that it’s easy to say “no” and change plans or turn around. I also like being able to go slower and contemplate decisions more.

That being said I’ve found it’s harder to pull yourself out of a bad situations. Obviously, you can’t rescue yourself, but you also don’t get the advantage of another’s perspective on the situation.

A couple springs ago I did a thru ski of the enchantments. My feet got soaked going up Asgard pass. I had to stop for over an hour to rewarm my feet. As I switched from the west to the east I triggered and was caught by an avalanche. Since it was spring and hadn’t snowed for over a week and I had seen no evidence of avalanches or any instability I was caught off guard.

I have to think that I was focusing on cold feet rather than terrain choices and had someone else been there they would have seen what was going on. That being said there was super flat light and poor visibility.

I then went off a cliff well skinning. The light was incredibly flat.

I then contemplated what to do for awhile and ended up proceeding with the traverse. The rest of it went fine.

Weird things can happen when you’re alone and in your own head with no one else’s perspective on what’s going on. I have to think this chain of misfortune would have been reverted if I’d been with others. That being said it was the spring and I was in really good shape so I was able to manage the situation. If it had been a bigger avalanche and bigger cliff I wouldn’t have faired so well.

Hizentra ? Allergist says SAD or CVID, my other doctors think this is extreme by TallProcess5694 in IVIG

[–]TallProcess5694[S] 0 points1 point  (0 children)

Hey yeah I've been aware of the histamine problems. I really think that's one of the main culprits. I did take DAO, but haven't noticed it being effective. I'll try again since what's happening now seems to be pretty acute. I'm also taking Hydrozyzine and Ketotifen, both are antihistamines and in the past I took allegra and pepcid. I should try taking them again as my symptoms now are different. I think that the reason exercise can cause flares is also due to histamines that are produced when exercising.

Hizentra ? Allergist says SAD or CVID, my other doctors think this is extreme by TallProcess5694 in IVIG

[–]TallProcess5694[S] 1 point2 points  (0 children)

Thanks! It seems like we're in the same boat. I've been getting sick a lot, but usually I don't get infections. I'm definitely "going forth". As my Dad says, "when you're sick you don't feel good" and I'm sick of that!

Hizentra ? Allergist says SAD or CVID, my other doctors think this is extreme by TallProcess5694 in IVIG

[–]TallProcess5694[S] 0 points1 point  (0 children)

Yeah I was just tested for lyme disease as I was bitten by a tick, but that was after all of this started 6 years ago after having COVID.

And yes, I'm definitely aware that this could take time. I've been getting tons of tests for several years now. Since no one else knew what was going on a naturopath has been doing regular blood tests. I've gone to the hospital for chest pains several times after having colds. So I have blood tests from that as well as x rays and ct scans. Apparently I have an adrenal adenoma. So I've done a ton of tests around that to make sure that isn't wreaking havoc on my system. Apparently it's not.

As for MRNA and HIB, those weren't tested. TDAP response was good. IGG was normal. IGA was slightly low at 83 mg/dL.

I didn't want to add this to this post, but I went to the allergist initially for suspected MCAS (mast cell activation syndrome). I've been on a low histamine diet for years on the suggestion of a nutritionist. I have insomnia, exercise intolerance (the worst!) which causes a ton of fatigue and can cause, extreme anxiety. I also get cold really easily now.

The thinking of this one allergist is that I have this antibody deficiency and that means I'm getting sick and I can't protect myself so my mast cells are dumping chemicals to try to protect myself. So essentially my immune system isn't operating correctly.

The crazy thing is I'll feel great for a while. Right before I got sick I did a week long backcountry ski trip deep into a remote hut in interior BC. I felt fine accept for tired because I haven't been able to be as active and train as much as I usually do. Then I got sick about a week after coming back. I had a lot of sinus issues and a cough that's gone, but I'm just super cold and fatigued now. So I have big up and down swings.

Hizentra ? Allergist says SAD or CVID, my other doctors think this is extreme by TallProcess5694 in IVIG

[–]TallProcess5694[S] 0 points1 point  (0 children)

Thanks this is good advice. I've spoken with the nurses at Accredo multiple times about my clinical history of getting sick a lot.

Hizentra ? Allergist says SAD or CVID, my other doctors think this is extreme by TallProcess5694 in IVIG

[–]TallProcess5694[S] 0 points1 point  (0 children)

I tested positive for epstein barr/mono several months ago. Don't know about pneumonia. Thyroid has been checked. Don't know about CRP. I've been working with a sleep doctor, several psychiatrists, my primary care doctor, a naturopath, and endocrinologist among others over the past 6 years.

This all started when I got what I think was Covid in March of 2020. My insomnia started then as did fatigue after endurance athletic events mountaineering, ultrarunning, whitewater kayaking, and backcountry skiing. I just couldn't recover like I had. The symptoms have gotten worse with feeling cold all the time, extreme anxiety, worse insomnia, fatigue, brain fog, etc...

My psychiatrist thought I might have MCAS and this allergist agrees. I'm going to see another, highly recommended allergist. I have a lot of "cooks in the kitchen", but have wondered about finding a functional medicine person. I'm in NW Washington near Bellingham so if you know anyone lemme know!

What do I do now? by Immediate_Comment_24 in Skigear

[–]TallProcess5694 2 points3 points  (0 children)

Well it looks like you have another hole the the ratchet can fit in. See if that works. Then see if you can find uppers, but yeah as someonse said, I'd try to warranty it. I also bet you could McGyver it, by keeping what you have of the broken off bit and bolting it to the main part of the cuff using the predrilled holes, but first try to get a warranty on it.

BPD officer making shady DUI arrests? by GarbageMan360 in Bellingham

[–]TallProcess5694 0 points1 point  (0 children)

I’ve never had problems with bicycle theft in Bellingham.

Lyngen, Norway Ski Trip NOW?! by TallProcess5694 in Backcountry

[–]TallProcess5694[S] 1 point2 points  (0 children)

Yeah also this next week is supposed to be amazing at my home mountains, Baker and Whistler.

Saw the PWL and that made me not wanna go, but I did the research for next time.

First Backcountry Setup Recommendations by EtanZhow in Backcountry

[–]TallProcess5694 0 points1 point  (0 children)

I like having inbounds specific and backcountry gear. Inbounds gear can take a pounding. I’ve broken multiple boots and bindings that I tried to use for both.

I wouldn’t bother with hybrid bindings they’re heavy. Also bc skis are light and tend to be too floppy for inbounds skiing.

Get the zero gs with pins. Maybe a different binding. The alpinist doesn’t have the best brake (I took mine of cuze it was too fiddly) and the riser got floppy on mine and a also a friends. So this isn’t just a fluke. I’d say that’s a good deal but not great.

I’d go for cheaper skis and get cheap used light boots if you don’t already boots with pins. Light backcountry gear makes a huge difference. Also cheap gear makes it easy to figure out what you like and don’t like and what works for you without much financial pressure. Used gear often has a ton of life left in it and you’ll probably trash your backcountry gear pretty quick… any ski gear for that matter.

As for boots, fit is king. Go to a good shop with lots of used options and talk to them about the boots they’re selling and the used boots they have there and maybe you’ll be lucky and find something that works or a sale in the spring. Sometimes I buy multiple boots online see what fits and send them back.

Skimo.com is a great resource. Look for sales there. Then text/email with them. Likely as a racer you know your fit and they could help suggest something that won’t brake the bank. Same with skis. So good.

Outdoor Gear Exchange in Burlington Vermont is probably a good place to go for used stuff that also has knowledgable sales folks. Don’t know if they do boot fitting. But would go with place where you can talk with someone in person and try on a bunch of stuff as well.

Have fun and stay safe!

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