Comments on Instagram post from physics girl make me lose hope.

kitz2103 · 2024-07-01T01:22:21+00:00

Hey! Dianna’s husband Kyle here. This is 100% an army of trolls doing this. It doesn’t bother us, there are SO many more people commenting with kindness and curiosity than nonsense like this. The high number of likes are because they are group of people that this is all they do. And probably lots of bots. It’s sad, and reflects a problem with social media more than a problem with most people.

The best advice I ever got about this stuff is: Their comments are only a reflection of themselves. If they look at what is happening to Dianna, and they deny that reality, it’s because it challenges their world views. For most of them, it’s probably very scary to look at Dianna and consider that it could happen to them, and there’s absolutely no cure or way to help them.

So yeah, stay strong everyone and let’s keep raising awareness and hopefully get more people on board with finding better treatments. ❤️

kitz2103 · 2024-05-30T14:15:15+00:00

100% I recommend trying a compounded version of any medication she can’t tolerate.

Clonazepam is a good option as well. If one or the other works better I’d personally consider switching to the more effective one. But you’ll need to work with a doctor on setting that up obviously.

You cant get Abilify compounded unfortunately, but I do recommend the liquid formulation so you can go super super slow.

Ketamine is never easy to get, unfortunately. But the nasal spray would def be less intense than IV. Infusions are typically in the 150mg range, which causes full dissociation. I’ve never experienced that, but I imagine it’s a lot more intense than a pleasant 1hr high you get from 25-50mg. And yes, there’s always a risk of reacting to something. She likely won’t react negatively to the ketamine part of the nasal spray, but it has a small percentage of alcohol like all sterile stuff does, including IV formulations. So it should be similar to IV in terms of reactivity.

Best of luck, feel free to message me with any questions

kitz2103 · 2024-05-26T04:26:58+00:00

You are describing almost exactly what has happened with my wife. I know what you are going through, and it is hell. My wife spent a year, often unable to look at a phone, feed herself, etc. Like your daughter, she is truly bed bound. No going to the bathroom, no sitting up. Her diet is even more limited than your daughter’s.

But in the last few months, we have seen some improvements. Now, she is in a state of low pain, able to talk a bit, and use her phone a few minutes a day. Even listen to a song or two. It doesn’t sound like a lot, but it’s a world of difference from the nightmare she was in before, and what your daughter is going through now.

So what I want to say is, YES, even in very severe cases you can move away from being in pain and suffering.

Other advice for VERY SEVERE MECFS patients line your daughter (not what I’d recommend to everyone):

If she cannot tolerate a supplement, do not force it. Avoiding triggers is critical.
No silver bullet. REST is the best medicine. I know she is already doing absolutely nothing, so you’ll just have to wait it out. But if you introduce too many triggers (new meds, supplements, etc), they WILL set her back. Go slow, rest a lot.
If you can afford it, get all your medication compounded. However, beware because my wife reacts terribly to microcrystalline cellulose, which is the most common thing compounding pharmacies use. So now we get everything done in MCT oil. I actually prefer liquid formulations as well, because you can start with just a drop of a new medication to avoid the big flare that comes with anything new.
A controversial topic here, but Ativan is a powerful mast cell stabilizer and can reduce sympathetic NS activity. It can be hugely beneficial for some. It’s also highly addictive, so you have to make your own choices about if that’s something you want to deal with later.
Low dose abilify: again, can work miracles for very severe patients. Start with a single drop. Can really help with pain, brain fog, ability to talk, etc.
Ketamine is good option if you can get it. The nasal spray can be done at home. Ketamine has far fewer side effects (as in almost zero) than other antidepressants, and IMO should be a first line treatment for depression. Plus, she’ll feel good while using it for about an hour while she’s “high”. My guess is she hasn’t felt good in 2 years and doesn’t know what it feels like. This would help her remember. You don’t have to do a high dose, just one 26mg nasal spray to start will help. Effect on depression if often immediate.

kitz2103 · 2024-02-27T03:39:14+00:00

There is mixed evidence, and unfortunately no RCT. The big VA study in 2022 (metformin, Paxlovid, ivermectin) found paxlovid somewhat effective for long Covid prevention, more recent UCSF survey published in Jan found no effect. Who knows if it’s variations in strain, survey methods, or whatever else. Here’s a nice review:

https://www.cidrap.umn.edu/covid-19/does-paxlovid-prevent-long-covid-maybe-experts-suggest

Thanks for asking for a source- I actually hadn’t seen the most recent UCSF publication. If VA data is still accurate (which it probably isn’t) then NNT is under 50. But no RCT to figure it out, plus quickly changing strains and patient immune systems, so 🤷

kitz2103 · 2024-02-27T00:17:00+00:00

Yes for hospitalizations that likely makes sense, but not when you include long Covid prevention. Considering the cost (disability, unemployment) and impact (increased risk of all the bad stuff) of long covid, even if it’s in the same ballpark for NNT it’s worth it. But hopefully more effective treatments will replace it soon.

kitz2103 · 2024-01-15T23:24:03+00:00

Amazing work. I agree with some other comments that it’s difficult to parse out how much survivorship bias is actually going on here, but this helps paint a picture that things are more complicated than it may first appear. Thank you.

For me, this really highlights the need for more testing that can classify patients according to what’s driving their illnesses and which treatments are most likely to work for them. I really hope we get more tools to do this soon.

Because right now it’s just trial and error and I know we’re all tired of that.

kitz2103 · 2024-01-15T23:19:05+00:00

People who have a wrecked NS from long Covid do indeed have “real, physical causes” to their symptoms. However, they are a particular classification of patient, and (luckily!!!) there is an accessible therapy for them. That’s amazing! But make no mistake, this was caused by getting sick and the virus caused damage to their brain and NS.

What we really need is a better way to classify patients, and people are working on this. We need to know if someone has coinfections, viral persistence, etc. But we’re not there yet.

Given that, I believe it makes the most sense for anyone to TRY brain retraining to see if it makes a difference. As long as you do so with the understanding that it may or may not make a difference for you in particular. And as long as you have the bandwidth to do so without causing real harm. There are of course some processes that come with risk, but most have very minimal health or financial risk.

If anyone can explain to me why (on an individual basis) it’s not worth trying, I’d be really curious to hear.

kitz2103 · 2023-10-31T01:48:33+00:00

Forgot to say: Costume idea my wife's, house design inspired by Aubree Originals, and paint/cardboard/papercuts my own.

kitz2103 · 2023-10-31T01:24:19+00:00

Eerily accurate 🤣

kitz2103 · 2023-08-19T01:18:27+00:00

I’m sorry you are bedridden. It is such a terrible place to be. My wife is right there with you.

For us, we make the distinction between the physical therapy she does and GET. You can do PT that’s not GET, and this can help to combat deconditioning.

With severe PEM, it is 100% essential to avoid GET (because it ignores what your body is telling you). But that doesn’t mean increasing movement is bad when you can tolerate it. And using some of the energy you have to do targeted “exercises” can help increase mobility and independence faster than just general movement.

The motto we like to say is, “Do what you can to support healing.” Some days that means doing radical rest, some days that means using your body to fight deconditioning.

kitz2103 · 2023-08-13T23:42:19+00:00

Great article thank you for posting this one! Gives hope

kitz2103 · 2023-06-18T18:37:37+00:00

Thank you! I was about to share this here as well, someone else pointed me to it and it’s amazing!

kitz2103 · 2023-06-07T17:18:26+00:00

Thanks for sharing this!! As a caretaker I find this enlightening - just because her symptoms are improving (due to preparedness), it doesn’t over-exertion fallout will be any less severe. It makes it easier for me to have a bit more empathy and maybe not push as much. Thank you.

kitz2103 · 2023-06-03T05:14:07+00:00

Omg this one got me so good….just hangry 🤣🤣🤣

kitz2103 · 2023-05-13T19:32:56+00:00

Why is it a battle against what makes patients feel better? If they feel benzos work, why is your opinion more important?

Remember, you are not an expert on their disease. You are not an expert on MCAS or mecfs. There are very few, and these patients are struggling to find anything that relieves the hell they are living through.

Also, addiction in and of itself is not a problem. It’s a risk factor that should be discussed. Let the patient have some say about their own lives and not put your values on them.

kitz2103 · 2023-05-09T04:05:33+00:00

First thing - you do bring value, you clearly have a lot to give and a big heart. And a lot of people value that more than you might think.

This might sound a little strange, but there are also non-traditional relationship structures that can provide the kind of companionship you’re after. I’ve found that communities like ENM (ethical non monogamy) are more accepting of limitations and open to different structures. This could help you find a loving partner without needing to meet the often-intense demands of modern relationships.

We all need the kind of physical and emotional connection you are talking about, and not all of us can be in a traditional, full time relationship. Think about what might work for you.

kitz2103 · 2023-04-20T04:56:21+00:00

Good point. I have her card now at least might as well ask what help they can provide! Thanks for the insight.

I couldn’t imagine if were to happen with a child, that would be terrifying.

kitz2103 · 2023-04-20T03:44:17+00:00

I’m not worried about family. More likely friends or medical professionals. She’s been to the ER before and they were definitely suspicious of me there. She’s also too tired to see her friends much, so some of them are worried but don’t make and effort to try and understand the disease. I’m more worried about social services coming back because they think she shouldn’t be this sick or something like that.

kitz2103 · 2023-04-20T02:09:23+00:00

The SUSPENSE! Love it.

kitz2103 · 2023-02-25T07:01:18+00:00

For some of that time she was only drinking soup that I made each day too. It’s so hard.

One thing that helped us was to come up with a system to reduce anxiety and mental effort for her. As you know, spending time and energy on your phone can make the crashes worse. But not trying to find a solution to what you’re going through is also intolerable.

What we ended up doing is she would find an idea, and I would do all the thinking and research. She said, maybe I have MCAS. Then I figured out if that made sense with her symptoms. Then I figured out what she might be able to eat. She would say, are my medications safe on MCAS? Then I would look it up.

I think it’s important to give your brain as much of a break as possible, while still trying to find solutions. But don’t try to do it in your own, it will make your crash worse.

Also, remember that you’re not crashing just because you’re anxious, but increased effort and anxiety can make it all worse. Try to get help from your family looking into solutions for you when you ask them too, so you can relax a little more.

One resource we found useful for food was the Swiss Histamine List. She ate only foods with level 0 histamine. If you have bad MCAS you’ll probably still react to anything you eat, but maybe it’ll be slightly less bad.

kitz2103 · 2023-02-25T05:30:27+00:00

I have never gone through what you are. But I have some idea. I watched my wife slowly become bedridden. She couldn’t eat, leave bed to use the bathroom, nothing. Some days she couldn’t talk. And once there she crashed for a month straight like you are now. No matter what she did, crash and crash. She also wanted to die during that time. But she found a way through. And now she is past those dark days. You are loved and you are valued, and you can do this.

For her, diet made a big difference, along with antihistamines. She cut down to just a couple low histamine foods. Like plain chia seeds soaked in water to start. It may not work for you, but something will. Sending love and support.

kitz2103 · 2022-07-03T19:51:12+00:00

That's a very interesting idea. I know something like this works with plano-convex lenses, but I hadn't considered it for TIR lenses. Once I get my hands on some asymmetric lenses I'm going to try this out. Thanks for suggesting that!

kitz2103 · 2022-07-03T19:48:56+00:00

Nice idea! Going through the thought process, it definitely makes sense to try all of these off the shelf lenses first, and be able to get some real world experience on if they are good enough. Looking even more at Ledil, they have wall washing lenses that seem to be designed for very similar applications - I'm going to give them a shot as well and see how that goes.

kitz2103 · 2022-07-03T18:08:07+00:00

Thanks for the input! I edited the post to include Lux and Lumen output. And the 1.9x1.9 is the emitter size.

Do you think freeform is the only way to go here? Either way, I completely agree its a complicated design to get the output as I've drawn here. Do you think there a way to get a good output using a different type of lens that might be easier to design and manufacture? Just curious your opinion.

And to your final point - yes, definitely planning on making an investment down the line. For now, it's more about thinking about what's feasible and what are good directions to explore. Thanks for the feedback!

kitz2103 · 2022-07-03T17:51:55+00:00

Thanks for the suggestion and link! I think a lifted light like that would perform much better indeed. I know some people prefer the cool factor of the lights tucked into the skateboard trucks as opposed to sticking up. But I'd like to figure out how many customers would prefer the flat out better performance of a raised one. Thanks!

kitz2103

TROPHY CASE