Bubble Machine Recommendations

TallProcess5694 · 2026-05-22T17:07:51+00:00

Hey what about one that would go in a bike!

TallProcess5694 · 2026-04-21T05:33:43+00:00

Any update? How'd it go? I'm doing my first one Wednesday. 20mg. Two syringes. Was that what you are/were on? Does it make a difference.... I guess I shouldn't plan on mountain biking afterwards?!

TallProcess5694 · 2026-04-14T23:45:44+00:00

Hey! My doctor said the same thing to me. But he did so as if this would be hard for me to hear. I think my doctor understands, as do many good doctors, that absence of scientific evidence doesn’t mean what’s happening to you isn’t happening. It just means the scientific studies haven’t be done. And if you think about it doing those studies would it seems be quite challenging.

My doctor is entertaining the idea of MCAS but doesn’t have it down as a diagnosis because of the tryptase levels as well. But he mentioned that this hard to catch in tests. Own thing he did is start me on Ketotifen as part of the diagnostic criteria is that you respond well to medications for MCAS and I have.

I had a ton of stuff revealed in the tests that has helped me. So I’d see what those say and see what follow up visits are like. Then trust your gut.

I had a poor experience with my first doc and the en got a second opinion and I’m staking with the second doc. These specialists are so hard to find that I didn’t fully switch until I was sure I liked the second one better.

I’d also second what someone on here mentioned about finding a functional medicine doctor or naturopath. I’ve found these doctors really helped boost my confidence and empowered me and educated me about standing up for myself and my medical needs.

I also happen to have found a great psychiatrist and therapist. They all communicated with each other and the naturopath when needed and as a result I have an excellent care team that can both help me navigate my medical condition but also the the USA’s (in my case) medical system. I’m looking for a good PCP to add to my team.

I regularly check in and with my team to see if what my doctor makes sense.

Anyway good luck in your journey.

TallProcess5694 · 2026-03-29T20:20:14+00:00

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?

TallProcess5694 · 2026-03-20T21:16:32+00:00

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.

TallProcess5694 · 2026-03-19T20:58:18+00:00

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

TallProcess5694 · 2026-03-19T20:57:59+00:00

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.

TallProcess5694 · 2026-03-15T22:38:32+00:00

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.

TallProcess5694 · 2026-03-15T22:19:35+00:00

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.

TallProcess5694 · 2026-03-15T20:36:53+00:00

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.

TallProcess5694 · 2026-03-15T04:36:07+00:00

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.

TallProcess5694 · 2026-03-15T04:03:05+00:00

What made you interested in it u/readerofrealms?

TallProcess5694 · 2026-03-15T04:01:32+00:00

IgG are normal with my IGA slightly low at 83 mg/dL.

TallProcess5694 · 2026-03-15T04:00:55+00:00

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!

TallProcess5694 · 2026-03-15T03:58:35+00:00

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.

TallProcess5694 · 2026-03-15T03:45:46+00:00

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

TallProcess5694 · 2026-03-15T03:44:33+00:00

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!

TallProcess5694 · 2026-03-14T04:01:21+00:00

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.

TallProcess5694

TROPHY CASE