physicsgirl - Health Update - MCAS

I am so impressed with you Kyle!!

Michael Jan

2023-12-22 06:21:36 +0000 UTC

I did not catch how the allergies present themselves. But I would assume such multi allergy will also trigger by airborne stuff. Did You and/or are You able to test the air in her room for allergenes, such as pollen, chemicals from detergents, spores from hidden mold a.s.o. a.s.o. ?

Martin Otzen

2023-08-26 17:03:05 +0000 UTC

I am sure you write out of sincere concern. But would this change the treatment she needs? If not then I don't think they should waste focus on that yet. My point being, that if I break my leg, I would focus in stabilizing the bones, ensuring they grow together again. And only later when my health is ensured focus on why i broke my leg and consider if action is needed from that.

Martin Otzen

2023-08-26 16:03:46 +0000 UTC

OMG! You're saying that all possibilities need not be considered! Where is your head, man? Spouting propaganda here can take a hike.

Lawrence Tate

2023-06-30 18:13:45 +0000 UTC

Thank you for your kind remark and good wishes.

Jean-Philippe Suter

2023-06-22 11:44:10 +0000 UTC

Thank you for taking the time to write out this extremely informative post. I wish you the best and hope your health is getting better.

Bob Perry

2023-06-22 10:37:10 +0000 UTC

We had 103,436,829 confirmed cases and 1,127,152 deaths. Source: World Health Organization. So just under 1/3 of our population confirmed the infection. Just over 1% of our population died. The vaccine saved lives!

Bob Perry

2023-06-22 10:35:56 +0000 UTC

You're making this political?

Lawrence Tate

2023-06-22 10:31:34 +0000 UTC

What good would that do now? Seriously. Unless we can find a time machine to go back in time this is a silly statement. Not only that, but there is no proof. All we know is that the poorer countries that never got the vaccine or got it very late lost millions of people.

Bob Perry

2023-06-22 10:24:01 +0000 UTC

I hope all involved are at least considering she could have had a bad reaction to the mRNA injections. It is not unknown, but severe.

Lawrence Tate

2023-06-21 23:28:42 +0000 UTC

It breaks my heart to hear how hard it's continuing to be for Dianna, but the extra glimmer of hope that she's been doing a little better recently brightened my day. Your description of what's going on mentioned the immune system several times. A great but not well-known way to normalize immune function is to take low-dose naltrexone, sometimes abbreviated LDN. It coaxes the body into producing more endorphins, which favorably modulate the immune system. I take it (for brain cancer), and I think that I feel a bit of endorphin buzz from the medication, which is a rather nice side effect which might help Dianna even more than it helps me, given her physical pain on top of depressive episodes. Here's the pharmacy where I get mine, as it's the lowest price source that I've found so far: https://www.rothfeldapothecary.com/ You can learn more about LDN on some of the following web sites: https://www.ldners.org/ https://www.ldnscience.org/ more specifically, using LDN to treat MCAS: https://ldnresearchtrust.org/can-ldn-help-mast-cell-activation-syndrome-mcas#:~:text=So%20can%20LDN%20work%20for,reduce%20excessive%20T%2Dcell%20dysfunction. An immunologist prescribes mine, but I think that my primary care physician would do so if I didn't have the immunologist. Another therapy that helps to normalize disregulated immune function, is lipid replacement therapy. You'd have to ask Dianna's doctor if she's already well enough to try it though. I underwent it for long-term Lyme disease, and it was the treatment which finally eliminated my Lyme infection, and as a "side-effect" it also eliminated my autoimmune thyroid condition (Grave's disease). My doctor told me that of her 20 patients who completed the therapy, every one emerged free from Lyme, and the 2/3 of them who had an autoimmune thyroid condition were cured of it as well. Apparently severe and/or long illness can cause damaged lipids to accumulate on cell membranes and/or cause unhealthy ratios of fatty acids to develop on those membranes, and these changes in themselves make healing much harder. The approach was developed by Dr. Patricia Kane: https://www.a4m.com/patricia-kane.html Here's a patient's experience and recommendation blog: https://nourishbalancethrive.com/blog/2014/11/25/pk-protocol-chronic-lyme-disease/ Finally, I've read often about how good nature is for people seeking to heal. (Given Dianna's scientific interests, she may benefit even more than the average person.) Here's an article giving some benefits of biophilia: https://mail.aol.com/d/search/keyword=for%2520Diana/messages/AIh4GLYCoRLAZIYoVQ4dSKjI0H4 Given Dianna's MCAS, I worry that she wouldn't currently tolerate having lots of plants in her room, much less going ouside among trees & other nature. But apparently just seeing greenery or hearing bird song are healing. Here's an article, which contains links to hours of recorded birdsong: https://www.treehugger.com/50-hours-nature-sounds-calm-joy-7500244?hid=1b8958dbc8f48d9ff6b9114a5cf7afabbd54d157&did=9255522-20230527&utm_source=treehugger&utm_medium=email&utm_campaign=treehugger-weekly_newsletter&utm_content=052723&lctg=1b8958dbc8f48d9ff6b9114a5cf7afabbd54d157 I remember my own periods of hyper-sensitivity to sound and/or light, and if Dianna is going through those, then listening to birdsong or watching nature video might be too painful most of the time. Perhaps you could find something tactile in the form of fractals for her to touch? I'm thinking seashells with a golden-ratio shell pattern, or other fractal patterns produced with a 3-D printer. When Dianna is feeling well enough to look at images, you could project fractal patterns on the wall of her room. For more on the healing properties of fractals, you may check the following: p. 11 (top half; summary of healing benefits with refernces), pp. 16-17 (the references from published literature) Here's an interesting excerpt from another source: << https://mainstreetmag.com/fractals-over-pixels-natures-healing-patterns/ According to physicist Richard Taylor at Oregon State University, “Your visual system is in some way hardwired to understand fractals. The stress-reduction is triggered by a physiological resonance that occurs when the fractal structure of the eye matches that of the fractal image being viewed.” Taylor has found that even focusing on a fractal for a short duration can trigger alpha-wave brain activity which induces a “relaxed wakefulness.” >> There are MANY other resources on the web about the benefit of fractals to human health, but I'm trying to save you some time. When Dianna has made it through this difficult period, she'll be the one with hints to help others recover from medical hardship. I wish Dianna, and her caregivers, all the best. Keep doing well, and hopefully even better and better :) Take care, Jean-Philippe Suter Randolph, NJ

Jean-Philippe Suter

2023-06-15 15:22:44 +0000 UTC

I suggest you try probiotics. I think Covid knocked out some of my gut bacteria and ever since Covid I've had some permanent changes in how I digest things. Probiotics are a pretty benign thing to try, in any case. My thoughts are with you!

Paul Adams

2023-06-14 02:32:02 +0000 UTC

Somebody get this wonderful man a mug of chamomile with honey for that rough throat. Y'all been plowing on for so long, fighting right alongside Dianna through this awful life period, you deserve so many hugs and a good ol' cry to vent the stress. Know you're so much stronger than you believe, so much more kind and compassionate and thoughtful than you think. You're awesome. Period.

Cell113

2023-06-12 21:28:06 +0000 UTC

https://www.kare11.com/article/news/local/metformin-drug-lowers-risk-of-long-covid-university-of-minnesota-study/89-c843884c-9e9e-4be9-ae3e-4141055d810a

Ken Hanson

2023-06-11 05:41:30 +0000 UTC

Kyle, you are amazing! You keep saying that Diana is a trooper, and she is. But don't forget that you also are a trooper and deserve enormous respect for the effort you put in pulling through!

Oscar C

2023-06-10 18:38:36 +0000 UTC

Awesome, great comment!

Richard Pearce

2023-06-09 05:33:23 +0000 UTC

Awesome!

Richard Pearce

2023-06-09 05:30:39 +0000 UTC

oh my. looks like you are exhausted. I can understand. here's hoping you have a network of love and concern beyond those of us who are fans. wish you strength and love. wish Dianna full recovery.

Robert Wellman

2023-06-08 17:04:08 +0000 UTC

Just pitching up as another carer, caring for loved ones to say. 'Solidarity fella.' Big love. Hopefully you're making baby steps forwards. I hope you both know that there's a lot of people on here care about how you're both getting on x

Paul L Arvidson

2023-06-06 11:08:23 +0000 UTC

Hi I found milk thistle really helped my MCAS, it's relatively cheap to buy and the Silymarin active compound it is used as evidence based medicine for other conditions (or so I understand). Best of luck x

Anna Morris

2023-06-04 16:58:39 +0000 UTC

This news sounds promising for Diana.

Bart de Boisblanc

2023-06-04 14:09:06 +0000 UTC

Kyle, you're strength is inspiring. You are seriously an incredible person, Dianna is very lucky to have you through all the good and all the bad. Keep your spirits up! I'm rooting for the both of you.

Sebastian

2023-06-03 23:56:46 +0000 UTC

yeah I see, everyone is different, and my symptoms are a bit different, I spent 40 days with a huge headache before I could get some relief, but as my doctor said, there is not a common treatment for everyone, so "try and error" is the only way.. but I wanted to suggest my solution.. maybe it can help somehow. I really do understand the frustration, because in 2 years I lost 8 months of "normal life" at this point.

Vladimir Calvi

2023-06-02 18:49:36 +0000 UTC

In a similar vein - excuse the pun - it would seem saline injections (i.e. increased hydration) might be helping folks with PoTS-like long Covid relieve symptoms according to this physician https://www.youtube.com/watch?v=retGCkEuE5A. I wonder if both this and the above solution might be essentially doing the same thing, oxygenating tissues, to relieve some of the fatigue and brain fog symptoms? Seems worth looking into. That said, obviously everyone’s experience is unique, and while MCAS and PoTS might theoretically have some shared etiology given their co occurrence https://www.ahajournals.org/doi/10.1161/JAHA.121.021002, I don't know if the mastocytosis (allergic reactions) could indeed be mitigated by such treatments as well, unless the systemic reactions are somehow downstream of - or at least can also be treated by - blood oxygenation. Might be worth running some of these ideas by the physician. May relief be found, God willing. Take care.

Jamie Chahine

2023-06-02 13:27:15 +0000 UTC

Hello, I may have the solution to your situation. I do suffer from Long covid too (4 months last year and 3 months this year) I am a phD student in chemistry and I tried to study all the papers about long covid, the truth is that they still have no clear idea about what is happening. What I can conclude from my scientific-paper study is that the weakness and the brain fog come out from a lack of oxygen in the tissues (simply no oxygen=no energy for muscles = tiredness) as well the same outcome for the brain (no oxygen = brain fog) I ended with the treatment with the neurologist in the Netherlands, he told me that the only thing to do is: try and error. and here we come to the result: I tried the pharmaceutical product "Candesartan 8mg" It's a blood-lowering pressure medicament, that relaxes the veins and as well helps the heart to pump blood, and provide more oxygen to the tissues. as crazy as it may sound, it made a difference for me day and night. I've done already a couple of tests like stopping taking it, and most of my symptoms came back that day. consider that I'm 29 y.o. and I'm taking the pill to "lower my blood pressure" even if during the tests my blood pressure was completely normal. I suggest you talk with your family doctor about the possibility to try it. it should not have any significant side effects, but if it works, then you will see the difference in 3-4 days.

Vladimir Calvi

2023-06-02 11:57:43 +0000 UTC

I really hope the MCAS specialist will help turn this around. My heart goes out to you both. Sending love and encouragement from Charleston SC.

Heidi A

2023-06-02 00:44:12 +0000 UTC

Thinking of you all ❤️

Sarah McKelvey

2023-06-01 00:01:42 +0000 UTC

I have MCAS as week. It’s awful, especially during the spring and fall months. Spring because of the newly sprouting plants. Fall because I live in a dense agricultural area(Iowa) and harvest kicks up lots of dust and small particulates. It’s not an easy disease to deal with, but it is survivable. I am in a bad place with my MCAS, as well. I take 6-7 allergy medications a day, during flares. I hope it gets better. Because of her complex medical issues, have you all looked into palliative care? It truly changed my life and made my complex medical issues less intense for me and my family. I have an extra set of specialist eyes watching out for me and solely with my case in mind.

Allyssa Buthmann

2023-05-31 13:06:49 +0000 UTC

We are here, we support what you've done in the past, we support you now and we support you whatever the future holds for you.

Philip Leitch

2023-05-31 03:22:05 +0000 UTC

Kyle, you're a freaking superhero - nobody can say otherwise without lying through their teeth. I just hope that some friendly AI-scientists come together and analyze the sh*t out of MECFS and MCAS and get a treatment for Dianna asap. She and you deserve a little miracle.

Eelko de Vos

2023-05-30 14:04:08 +0000 UTC

OMG, such a blow. I have loved Dianna's vids for years and have shared them with my nieces as an example of what a woman can accomplish, Dianna is an inspiration to all, especially young women. I will be asking the universe to give her strength for a fast and full recovery. All my love to all of you. 💜💜💜

David Cambest

2023-05-30 03:51:09 +0000 UTC

Hmm. I find lack of faith disturbing. Old news is the belief that physiological health ONLY refers to the body. That it excluded the connection between the brain and mind/thought. Stress is the number 1 cause of disease . Most stores originated from…our thinking. I say- try everything and God Bless.

Dawn Style

2023-05-29 23:55:36 +0000 UTC

Thank you so much Kyle for everything you're doing! You're a trooper too! We're rooting for you all! Thank you for the update

Baptiste Bauer

2023-05-29 23:12:08 +0000 UTC

Some individuals with long COVID may be eligible for Social Security benefits if they meet specific criteria. https://www.verywellhealth.com/long-covid-disability-insurance-7229586

Robert Fiske

2023-05-29 22:22:44 +0000 UTC

I suspect that me and my girlfriend might have a less severe form of long COVID as we struggle to get things done around our home and go to work, some days are harder than others, but I just hope the little we’re able to offer can help in the recovery. ❤️❤️

Irvin

2023-05-29 20:26:04 +0000 UTC

Perhaps. I'm not trying to be a doctor. But my own experience shows a direct causation between mentally readying myself and body response. I.e. my brain acts on my body. And at this point, any suggestion that merely requires mental strength (not unaffordable medication or treatments) is worth a try do you not think? Dianna and Kyle, if they read this, could simply TRY it and see. That's what real scientists do. They test hypotheses. They don't just discuss theory forever. I was told I would "have schizophrenia for life", by doctors, that medicating was the only way. Medication didn't work. So I found my own way, and it works, just slowly. I still struggle, but much less than before. I'm only relating back my experience in the hopes it inspires some action. And be pragmatic. Are you just going to wait till the experts tell you how to heal or are you gonna join in, and try things that in tandem with what is recommended? You have literally nothing to lose. Hoping you're having a good day.

Kieran Le Cam

2023-05-29 16:07:14 +0000 UTC

Researchers who push CBT for physical illness do so bc they can’t figure out the physiological basis. It’s the same with MECFS, fibromyalgia, lyme, etc.

Centralperk

2023-05-29 12:14:37 +0000 UTC

thanks for the update! So much rough stuff going on. We're here rooting for you guys!

Jilliannnnnnn

2023-05-29 02:36:04 +0000 UTC

I've done a quick read up on MCAS. I know what I'm about to say might seem weird, but hear me out, please. I've been diagnosed with schizophrenia for a good 8 years now. And I've discovered cognitive behavioral therapy works. I.e. retraining yourself. My quick read up on MCAS seemed to suggest CBT also seems to calm the nervous system, and consequently the allergic immune response. If there's one thing I've learned from dealing with disease and hardship is that the body/mind connection goes both ways. YOU are the mind. You can control your body. You just have to be stubborn in thinking you can heal yourself. This is why I keep telling you to FIGHT. Because it is that urge in myself I had to develop, to train my brain to function again after I got hit with the psychosis. It will take time, and you have to swallow that pill. Life won't be like it was before. But you can turn your shit into other people's gold, even if you won't completely get out of this shit you're in.That thought reassured me my life wasn't over and was still worth fighting for. Fight! Train! Push! Focus! Spend more energy than anyone has ever spent before if you have to! I'm in your corner. Much love!❤

Kieran Le Cam

2023-05-28 23:03:28 +0000 UTC

Hang in there! I think of you all often <3

David Connell

2023-05-28 22:35:42 +0000 UTC

That's a great idea. Although you wouldn't want to then develop an allergy to that. I would go straight to IV nutrition and bypass the gut if possible. You can't survive forever on that, but it could buy her some time.

Margaret Trias

2023-05-28 19:04:13 +0000 UTC

I feel for both of you and give you a lot of credit for sharing so much of how this is effecting you. My thoughts are with you and I hope things start to improve in significant ways. Hugs for both of you.

George Hampton

2023-05-28 18:55:45 +0000 UTC

Thank you for the update. I feel sorry for how long both of you have endured this. Life isn’t fair, but with adversity comes knowledge and hopefully progress in treatment. We are all hoping for recovery and a return to normal living. Much love!!! ❤️

Tom Schroeder

2023-05-28 18:42:48 +0000 UTC

Kyle, you look and sound just like I did at the same time in my wife's LH. While I'm very happy that you've found a doctor who won't immediately just tell you that she's making it up and needs psych drugs, I understand it's not much consolation for how profoundly a person can suffer, especially one you care about. But this isn't forever, regardless of how endless it feels. The analogy I've used is that LH is a long walk through a scary forest, sometimes there are little clearings or darker sections- but you won't know that you're through it until you're out. It could be a long walk yet to come, but you owe it to yourselves to get there.

zak t

2023-05-28 16:47:30 +0000 UTC

PLEASE READ THIS!!! There's a treatment in Japan for long COVID called E.A.T. I am attaching the YouTube video link from NHK about the treatment Maybe this can help her. https://youtu.be/IpCF3EqKWXM

Highlander723

2023-05-28 15:22:56 +0000 UTC

Good to hear you found a specialist. I have been hesitant to say anything as I'm sure you are getting suggestions from everyone. I had a similar, but not as severe, situation after a prior coronavirus infection in 2012. Also had food allergies and fibromyalgia. I tried every elimination diet out there. Mine turned out to be a systemic nickel allergy, where my body began to overreact to nickel in foods. I have found that the l. Reuteri Probiotic actually helps reduce the reactions. Only Probiotic that works in the lower intestine. Gut issues can absolutely cause depression and anxiety! I wish you well.

Shauna Teevan

2023-05-28 10:43:23 +0000 UTC

To importantly and unapologetically state the obvious! I am shure....? That the experts have already been down the path of considering the various options of intravenous and or injection vitamins? And also there inherent safety dynamics and mindful considerations of use in this context? Also just wanted to post to check in to show support and continue cheering on Dianna and Kyle! Ps. As usual world class peaceful and calming music: https://www.youtube.com/watch? v=UWYS6oYPL_c&list=OLAK5uy_lU7yA3ggP6oNjHT30friUJL6KJ0f_BIo8

Richard Pearce

2023-05-28 09:29:50 +0000 UTC

You have our unwavering support Kyle, thanks for taking care of her. We're all hoping for Dianna to get better.

Pato Hondagneu Roig

2023-05-28 05:35:55 +0000 UTC

It sounds like Covid really messed up her immune system so that it is reacting to anything and everything. I hope they can find a solution so she can get back to Physicing

Wild_Lee_Coyote

2023-05-28 02:56:05 +0000 UTC

I agree. When I was younger I had an episode of Epstein-Barr that knocked me out for 2 weeks. It’s just a syndrome. It sucks to be sick but it doubly sucks when you don’t know why. I’m happy she’s getting the care she needs and I look forward to the day where she can get back to a semi-normal life.

Jim Allen

2023-05-27 23:21:47 +0000 UTC

Understanding that ME/CFS is just symptoms and not a disease you can treat directly is a huge step. Especially finding a doctor that understands that. I’m glad they have figured out she has MCAS and you are treating that the best you can. You are in my thoughts and prayers.

Alex Taylor

2023-05-27 22:40:35 +0000 UTC

Can she tolerate any elemental formulas? I have a friend whose daughter has EoE and is essentially allergic to all foods. She survived on elemental formulas for many years before finally being able to start trialing and tolerating a few foods. It's obviously a different illness but I was wondering if elemental formulas would be possible for Dianna.

JM

2023-05-27 22:06:31 +0000 UTC

This is hard to watch. I'm not religious, but I'm praying for you anyway. Stay strong 💪

Joji

2023-05-27 19:47:28 +0000 UTC

I heard this on NPR the other day and thought of Dianna. Might not be the same symptoms, but I was happy to hear scientists are working on finding the cause of Long COVID. Long COVID scientists try to unravel blood clot mystery - https://one.npr.org/i/1175217130:1175251904 I sincerely hope Dianna gets well soon. Kudos to everyone supporting her on a daily basis.

Doan Hohmeyer

2023-05-27 19:37:08 +0000 UTC

This sounds like an interesting clinical study, and researcher resource: https://www.theguardian.com/society/2023/may/27/immunologist-akiko-iwasaki-we-are-not-done-with-covid-not-even-close

NW Rain

2023-05-27 19:26:43 +0000 UTC

As much as I am obviously rooting for Dianna I am especially rooting for you Kyle! What a trooper! I lost my wife suddenly in 2016 of congestive heart failure - one minute here and the next not. I would not wish Dianna's predicament and challenges on anyone but at least you still have her and she has a chance - I would say that now is, at least, a hopeful time where these types of issues will be determined and have good outcomes. For you and the family and Dianna the alternative is definitively worse but the pain and suffering of everyone involved really sucks at the moment but I am sure science will not fail Dianna and she will return to you as the beautiful woman of promise she has become to you and the world. Kyle, do not doubt your cause, or your effort or anything for that matter. This is hard on you but you are doing all you can, a really heroic job!

Jay Kean

2023-05-27 18:41:46 +0000 UTC

Similar path for my scientist daughter diagnosis for Lupus. Random symptoms with each flare up which makes it so difficult to diagnose and treat. Hydroxychloroquine was the longest drug in use until Benlysta was approved and it's very expensive. It's tough on everyone. Hope you experience better days soon. Miss your happy physicsing!

CTOCSE8

2023-05-27 15:48:40 +0000 UTC

Love and mercy to the both of you! ❤️

Kendric Beachey

2023-05-27 15:10:45 +0000 UTC

Love and peaceful vibes to Dianna and yourself. So many people in your corner rooting for you. Prayers from Colorado!

Bruce Ennis

2023-05-27 15:01:54 +0000 UTC

I've not tried them. I'll be googling now...

Scotti & Amy

2023-05-27 14:39:49 +0000 UTC

Sounds just like my whole family... Along with an Ehlers Danlos diagnosis

Scotti & Amy

2023-05-27 14:38:59 +0000 UTC

Have you tried DAO supplements, and if so did they make any difference?

Descaii

2023-05-27 14:36:46 +0000 UTC

I feel that chances are we'll be discovering new things about its effects for a very long time... :(

Dale Allen Platt

2023-05-27 14:01:15 +0000 UTC

Adding to the love and support that everyone is sending. You all are amazing!

Koren Taylor

2023-05-27 13:58:45 +0000 UTC

We're all cheering for you Dianna, and this includes people from some parts of this world where you have never previously thought you had fans. Like Estacada, Oregon. If I don't live there now.

dino@deanlm.com

2023-05-27 13:51:35 +0000 UTC

I think about D & K a lot. Hang in there, guys. All I can think of to say.

Peter Laws

2023-05-27 13:50:10 +0000 UTC

Love you guys, we’re here for you. Stay strong, stay calm, just keep breathing. From fellow long hauler

Centralperk

2023-05-27 13:31:48 +0000 UTC

Yes. Covid infection despite being vaxd and boosted, turns into Long Covid. Can happen to anyone, despite “the pandemic being over.”

Centralperk

2023-05-27 13:30:39 +0000 UTC

Good on you for doccumenting. Glad to hear she's been feeling better. Good luck!

Antonio A

2023-05-27 12:26:45 +0000 UTC

So Sorry...fingers crossed.

Don

2023-05-27 12:17:44 +0000 UTC

So glad you found a specialist. My heart goes out to you. ❤️

Jen S

2023-05-27 12:13:02 +0000 UTC

Sad to hear about the MCAS; what a long hard road for you both. Prayers from Australia.

Heather and Bryan Medbury

2023-05-27 11:48:07 +0000 UTC

I hope she gets better. I also hope you are doing well Kyle. This has to be taking a toll on you. I hope you have a safe space to talk to someone and are able to take a break to collect yourself. Take care sir and I wish the best for both of you.

Grimm Reaper

2023-05-27 11:39:28 +0000 UTC

I find myself confused... Through no fault of anyone but my own I'm sure... Didn't this start out as COVID and then turn into Long-COVID? Which, by my understanding, we are still learning about constantly...

Dale Allen Platt

2023-05-27 11:36:54 +0000 UTC

Ther are Mast Cell stabilizers, eg Cromolyn . That really help. I've suffered for years with this.Good news there is help for it.

Michael Pistey

2023-05-27 11:30:25 +0000 UTC

I was diagnosed with this a month ago. A great book on this is Don't Bet Against Ocam, by Dr Afrin.

Michael Pistey

2023-05-27 11:29:03 +0000 UTC

I cannot imagine what you are both going through - having read up on MCAS, I can see that it is an extremely serious condition. Much love to Dianna - you are in my thoughts.

Nigel D Perels

2023-05-27 10:52:58 +0000 UTC

Sending ❤️❤️❤️ Please get better Dianna! Kyle you're the best, take care of yourself too.

Niels van den Boogaard

2023-05-27 09:18:14 +0000 UTC

Sending healing energy your way; this too shall pass, keep fighting Dianna; it will be worth it in the end.

Dr Andy Hill

2023-05-27 09:01:36 +0000 UTC

I am sad that she has been feeling worse and I hope she will feel better soon. Love to you all from Sweden.

Stefan Alenius

2023-05-27 08:25:19 +0000 UTC

There are others that are not so intrusive as well. My thought is Reiki & similar, long distance healing that can be done from outside your home, so is not at all intrusive... Any Reiki practicioner (professional or amateur) would need Kylie & Dianna's permission though to send healing Reiki

Peter Chandler

2023-05-27 08:23:44 +0000 UTC

I really hope she'll get better soon, wishing you guys the best. Stay strong!

Itay Habani

2023-05-27 07:41:27 +0000 UTC

My goodness but Kyle looks like he's not well. This has clearly been devastating for him, too...PLEASE take care of yourself, too, Kyle! Much love to both of you and the entire family.

Brian Burleigh

2023-05-27 07:20:12 +0000 UTC

Dear Kyle and Dianna, My heart goes out to both of you. I wonder if acupuncture or hypnotism would help with any of the symptoms. I saw what Scotti and Amy wrote. Fingers crossed, Xolair would work for you too!!! Lots of love, Sasha

Sasha Rosen

2023-05-27 07:13:59 +0000 UTC

Just to wish you both all my best wishes, its heartbreaking 🙏

Alan

2023-05-27 07:06:32 +0000 UTC

My heart is breaking for Dianna and Kyle.I wish there was something we could do beyond words and money. Thinking about you both often.

David Strome

2023-05-27 06:59:19 +0000 UTC

Thanks for letting us know. York Test over here in the UK does an IgE blood test to determine allergies. Their tests show that blood sent by post maintains the same results with quite a while in the post. The issue then is sending a blood sample cross border from the US to the UK... Wishing you guys all the best and Dianna's continued healing moving faster

Peter Chandler

2023-05-27 05:56:53 +0000 UTC

Huge hugs to you. I hope the situation will improve soon.

Raffaele Santagati

2023-05-27 04:46:26 +0000 UTC

Wishing you all the very best. ❤️❤️❤️

Manfred Knorr

2023-05-27 04:22:13 +0000 UTC

I am stunned that anyone would have to deal with so much. 💪

Manfred Knorr

2023-05-27 04:20:34 +0000 UTC

I'm so sorry for what you all have to go through. I wish there was more I could do to help you but just know Dianna loves and appreciates everything you are doing for her.

Tim

2023-05-27 04:07:16 +0000 UTC

Same here. We'll stay here regardless. Give us updates as you're able and willing.

Robert Barnard

2023-05-27 04:05:21 +0000 UTC

Thank you for the update. We're standing with you both and look to more healing.

Robert Barnard

2023-05-27 04:04:13 +0000 UTC

I really appreciate the updates but I hope this is more of a "want to do" video than a "have to to video". Idk if Patreon has upload requirements but I would still be giving money without the updates. 💜 Heal well

Kenzie Bartels

2023-05-27 03:49:48 +0000 UTC

Hoping for the best.

Jeremy Baker

2023-05-27 03:32:58 +0000 UTC

My family has MCAS. Two of us were prescribed Xolair shots to help with it. It made a HUGE difference for both of us.

Scotti & Amy

2023-05-27 03:20:53 +0000 UTC

I know how you feel, Dianna! It is awful. I have to limit my foods, sun exposure, natural fabrics. I have POTS, CFS, and Fibro Myalgia. I don’t have severe allergic reactions like anaphylaxis, but hives, migraines, gut migraines, and crashes. I hope you find something that works for you. :( For me I use grön edibles for pain and stomach sensitivity. You’re still amazing, Diana!

Veronica Lacquement

2023-05-27 03:20:15 +0000 UTC

Sending you both so much love and patience. Please know that so many of us are thinking of you and hoping for the very best possible outcome. <3

Amber Lee Dennis

2023-05-27 03:11:54 +0000 UTC

Thank you for sharing an update. You're doing great Kyle and glad to have read in the text update that Dianna is feeling a little better this week. Just got to keep getting through those hurdles. My thoughts are with you two.

Jason L

2023-05-27 02:47:38 +0000 UTC

Hugs & lots & lots of positive thoughts to you all.

Linda Cobarruvias

2023-05-27 02:47:11 +0000 UTC

Blessed anniversary ~ ongoing prayers.

Katey

2023-05-27 02:45:42 +0000 UTC

I'm glad that Diana has such a great partner. I can only imagine how hard this is for both. I'm so, so sorry to hear about those symptoms, and can only hope that things get better soon.

Craig Good

2023-05-27 02:42:35 +0000 UTC

Thank you for the updates. Glad Diana has you. Keep strong. We are all praying for both of you.

Paul Ljucovic

2023-05-27 02:37:22 +0000 UTC

Both of you are in my thoughts. I hope you are able to get the MCAS to go away, or at least be less reactive. Take care!

John DeJarnatt

2023-05-27 02:26:17 +0000 UTC

Thank you for sharing this information. Diana is a very special person and it's so good she has you and the others to work with her on these changes. - Wishing you all the best.

John N Nelson

2023-05-27 02:22:44 +0000 UTC

Every time there is a new post, my desperate instinct is to start the affirmation, "PLEASE PLEASE PLEASE BE BETTER NEWS?!?" #MonthMADE for each and every report that is not worse than the last! It's amazing, and clearly due her wonderful presence, how sincere my concerns for Dianna's best outcomes have grown. She has touched so many of us so. Please be well our beloved PhysicsGirl!!

Hacim Llih

2023-05-27 02:16:03 +0000 UTC

Oh, my! Such persistent challenging symptoms! Kyle and Dianna, you both are legends and have my deepest admiration. Hoping that full health and vitality return very soon.

Leigh Newton

2023-05-27 02:01:19 +0000 UTC

My heart goes out to both of you. I pray for each of you often. I'm glad many people are trying thier best to help. You've got some wonderful friends and talented people behind you. Keep up the good work!

Chris B

2023-05-27 01:53:04 +0000 UTC

It's sad that you both had your first wedding anniversary under these circumstances but I'm happy I get to wish you a happy anniversary because you both are still working and fighting life's challenges together :)

Robert Evans

2023-05-27 01:52:47 +0000 UTC

This is so heartbreaking. I'm so sorry for the two of you.

Marcio Paduan Donadio

2023-05-27 01:51:39 +0000 UTC

Keep staying strong 💕 Thank you for the updates. You're helping so many others like Dianna by doing what you're doing. Many prayers until the next update. One moment at a time.

Savy M

2023-05-27 01:44:39 +0000 UTC

It is a diabolical injustice that anyone should have to experience what Dianna is, much less someone as engaged in the universe around her as Dianna is. I desperately wish I had any words that could comfort her, or Kyle. I see Kyle in these videos, and I say this with tremendous respect, he looks like a battle-battered soldier back from war. I cannot imagine the strength you are both summoning. For what little it is worth, I salute you.

Christopher Schierup

2023-05-27 01:43:41 +0000 UTC

Really appreciate you, Kyle, for your selfless love and care! One day at a time! You both can do this!!

Chad Freeman

2023-05-27 01:39:37 +0000 UTC

I hope her doctor can get her MCAS stabilized so that she’s able to eat without it stressing out her body quite so much. This is such a long road where the smallest victory is an big quality of life improvement. And reducing reactions would stop using up so much of her energy from day to day. I have MCAS and at one point was reacting to every single food I ingested (and the friction of the food against my mouth was causing reactions, too). I’m now a decade out from diagnosis and treatment and while I still have significant allergies, I’m able to eat a diet of foods I enjoy… and even eat at restaurants!

Sara Chandler

2023-05-27 01:35:10 +0000 UTC

My thoughts go out to you both, Dianna Physics Girl and Kyle "THE ROCK"! I can't imagine what this has been like for you both.... Happy Anniversary to you both!

TheJaded

2023-05-27 01:30:38 +0000 UTC

This can't last forever! See that big-dharma wants $5B to develop a pan corona vaccine. Seems like a good idea (so the MAGAs are against it). I love seeing Dianna's early work going into accelerators and down into deep mines. We're all lucky to have good memories of complex science introduced by a brilliant beautiful woman like Dianna. Thanks for all your steadfast love and support Kyle. Maybe 2023 is the year we get past this pestilence. No couple has ever deserved a better start than you two. Not much longer now.

dryfrog

2023-05-27 01:26:06 +0000 UTC

Nothing to say other than you're both troopers and hopefully some progress will be made soon.

steve crandall

2023-05-27 01:23:47 +0000 UTC

I can't think of anything to say that will help but gosh I hope things start looking up, you both (and the whole team) deserve it, no one should have to go through this or watch someone they love go through this

Stacy Litwin

2023-05-27 01:15:17 +0000 UTC

thank you for the update. it still heartbreaking to hear she's taking a couple of steps back. but please keep fighting.

Gerry Leonor

2023-05-27 01:09:28 +0000 UTC

I think about Diana all the time 😔 I never thought I would care so deeply about a YouTuber but Diana has reignited a love for learning in me over the last few years. I hope with every bit of my heart she recovers. Even if she never comes back to YouTube, just let her recover and return to her life. Her, and anyone who is dealing w illness. Health is wealth and we take it for granted too often. Diana, I am rooting for you!!!

Ashley Morillo

2023-05-27 01:03:56 +0000 UTC

I wish I could think of something witty to say. Know that you are all in my thoughts and prayers all the time.

Mark Dakins

2023-05-27 01:02:18 +0000 UTC

Dianna has been such a light in this world - Kyle is the keeper of the flame right now. What an incredible display of character and dedication! Take care of yourself, Kyle. Caretaking is one of the world's most difficult jobs. We'll keep faith for an amazing turnaround in Dianna's health. Love to you both. ❤️

Carol Folsom

2023-05-27 01:00:27 +0000 UTC

Thank you for the candid report. I am sure you are just as exhausted by it all as Dianna is Kyle. Keep pushing forward.

Suzanne Strickland

2023-05-27 00:58:35 +0000 UTC

Happy anniversary. I am so glad you have each other. Happy for any progress and prayers continue.

Timothy Williams

2023-05-27 00:55:38 +0000 UTC

Sending out best wishes for a prompt recovery, we know this is a very taxing journey so we send our love and support. Get well soon Dianna.

Victor Lopez

2023-05-27 00:50:56 +0000 UTC

Hey Kyle, I'm hoping you're getting the support you need too. We're all worried about Dianna but you're going through your own ringer here. Have you gotten a few minutes to play the new Legend of Zelda or anything? Take care

Heliks

2023-05-27 00:49:45 +0000 UTC

Even a little progress makes my day, I can't imagine how you all are doing through it all. 💜

Douglas Boyle

2023-05-27 00:49:41 +0000 UTC

Glad that you've found a specialist. I hope things start to improve for both of you, I can't even imagine what you're going through. Thank you for the updates and take care as best you can.

SLaSZT

2023-05-27 00:47:43 +0000 UTC

It breaks my heart to see you all going through this.

Shawn Rudolph

2023-05-27 00:45:29 +0000 UTC

I woke up thinking about Dianna this morning. I'm glad to hear that she has a good team taking care of her. Please let her know that we are all thinking of her and pulling for her! 🤗❤️

Amelia Adele T.

2023-05-27 00:44:10 +0000 UTC

Sending good vibes with wishes and hopes into the universe for such a wonderful teacher💕☀️

Jean

2023-05-27 00:43:22 +0000 UTC

That last line gives me hope! 💛💜

Trace Dominguez

2023-05-27 00:42:57 +0000 UTC

Prayers are still going up for you both. 🙏

Dana Latta

2023-05-27 00:42:49 +0000 UTC

Health Update - MCAS - May 26

Comments

I am so impressed with you Kyle!!

I did not catch how the allergies present themselves. But I would assume such multi allergy will also trigger by airborne stuff. Did You and/or are You able to test the air in her room for allergenes, such as pollen, chemicals from detergents, spores from hidden mold a.s.o. a.s.o. ?

OMG! You're saying that all possibilities need not be considered! Where is your head, man? Spouting propaganda here can take a hike.

Thank you for your kind remark and good wishes.

Thank you for taking the time to write out this extremely informative post. I wish you the best and hope your health is getting better.

We had 103,436,829 confirmed cases and 1,127,152 deaths. Source: World Health Organization. So just under 1/3 of our population confirmed the infection. Just over 1% of our population died. The vaccine saved lives!

You're making this political?

What good would that do now? Seriously. Unless we can find a time machine to go back in time this is a silly statement. Not only that, but there is no proof. All we know is that the poorer countries that never got the vaccine or got it very late lost millions of people.

I hope all involved are at least considering she could have had a bad reaction to the mRNA injections. It is not unknown, but severe.

I suggest you try probiotics. I think Covid knocked out some of my gut bacteria and ever since Covid I've had some permanent changes in how I digest things. Probiotics are a pretty benign thing to try, in any case. My thoughts are with you!

https://www.kare11.com/article/news/local/metformin-drug-lowers-risk-of-long-covid-university-of-minnesota-study/89-c843884c-9e9e-4be9-ae3e-4141055d810a

Kyle, you are amazing! You keep saying that Diana is a trooper, and she is. But don't forget that you also are a trooper and deserve enormous respect for the effort you put in pulling through!

Awesome, great comment!

Awesome!

oh my. looks like you are exhausted. I can understand. here's hoping you have a network of love and concern beyond those of us who are fans. wish you strength and love. wish Dianna full recovery.

Just pitching up as another carer, caring for loved ones to say. 'Solidarity fella.' Big love. Hopefully you're making baby steps forwards. I hope you both know that there's a lot of people on here care about how you're both getting on x

Hi I found milk thistle really helped my MCAS, it's relatively cheap to buy and the Silymarin active compound it is used as evidence based medicine for other conditions (or so I understand). Best of luck x

This news sounds promising for Diana.

Kyle, you're strength is inspiring. You are seriously an incredible person, Dianna is very lucky to have you through all the good and all the bad. Keep your spirits up! I'm rooting for the both of you.

I really hope the MCAS specialist will help turn this around. My heart goes out to you both. Sending love and encouragement from Charleston SC.

Thinking of you all ❤️

We are here, we support what you've done in the past, we support you now and we support you whatever the future holds for you.

Kyle, you're a freaking superhero - nobody can say otherwise without lying through their teeth. I just hope that some friendly AI-scientists come together and analyze the sh*t out of MECFS and MCAS and get a treatment for Dianna asap. She and you deserve a little miracle.

Thank you so much Kyle for everything you're doing! You're a trooper too! We're rooting for you all! Thank you for the update

Some individuals with long COVID may be eligible for Social Security benefits if they meet specific criteria. https://www.verywellhealth.com/long-covid-disability-insurance-7229586

I suspect that me and my girlfriend might have a less severe form of long COVID as we struggle to get things done around our home and go to work, some days are harder than others, but I just hope the little we’re able to offer can help in the recovery. ❤️❤️

Researchers who push CBT for physical illness do so bc they can’t figure out the physiological basis. It’s the same with MECFS, fibromyalgia, lyme, etc.

thanks for the update! So much rough stuff going on. We're here rooting for you guys!

Hang in there! I think of you all often <3

That's a great idea. Although you wouldn't want to then develop an allergy to that. I would go straight to IV nutrition and bypass the gut if possible. You can't survive forever on that, but it could buy her some time.

I feel for both of you and give you a lot of credit for sharing so much of how this is effecting you. My thoughts are with you and I hope things start to improve in significant ways. Hugs for both of you.

Thank you for the update. I feel sorry for how long both of you have endured this. Life isn’t fair, but with adversity comes knowledge and hopefully progress in treatment. We are all hoping for recovery and a return to normal living. Much love!!! ❤️

PLEASE READ THIS!!! There's a treatment in Japan for long COVID called E.A.T. I am attaching the YouTube video link from NHK about the treatment Maybe this can help her. https://youtu.be/IpCF3EqKWXM

You have our unwavering support Kyle, thanks for taking care of her. We're all hoping for Dianna to get better.

It sounds like Covid really messed up her immune system so that it is reacting to anything and everything. I hope they can find a solution so she can get back to Physicing

Understanding that ME/CFS is just symptoms and not a disease you can treat directly is a huge step. Especially finding a doctor that understands that. I’m glad they have figured out she has MCAS and you are treating that the best you can. You are in my thoughts and prayers.

This is hard to watch. I'm not religious, but I'm praying for you anyway. Stay strong 💪

This sounds like an interesting clinical study, and researcher resource: https://www.theguardian.com/society/2023/may/27/immunologist-akiko-iwasaki-we-are-not-done-with-covid-not-even-close

Love and mercy to the both of you! ❤️

Love and peaceful vibes to Dianna and yourself. So many people in your corner rooting for you. Prayers from Colorado!

I've not tried them. I'll be googling now...

Sounds just like my whole family... Along with an Ehlers Danlos diagnosis

Have you tried DAO supplements, and if so did they make any difference?

I feel that chances are we'll be discovering new things about its effects for a very long time... :(

Adding to the love and support that everyone is sending. You all are amazing!

We're all cheering for you Dianna, and this includes people from some parts of this world where you have never previously thought you had fans. Like Estacada, Oregon. If I don't live there now.

I think about D & K a lot. Hang in there, guys. All I can think of to say.

Love you guys, we’re here for you. Stay strong, stay calm, just keep breathing. From fellow long hauler

Yes. Covid infection despite being vaxd and boosted, turns into Long Covid. Can happen to anyone, despite “the pandemic being over.”

Good on you for doccumenting. Glad to hear she's been feeling better. Good luck!

So Sorry...fingers crossed.

So glad you found a specialist. My heart goes out to you. ❤️

Sad to hear about the MCAS; what a long hard road for you both. Prayers from Australia.

I hope she gets better. I also hope you are doing well Kyle. This has to be taking a toll on you. I hope you have a safe space to talk to someone and are able to take a break to collect yourself. Take care sir and I wish the best for both of you.

I find myself confused... Through no fault of anyone but my own I'm sure... Didn't this start out as COVID and then turn into Long-COVID? Which, by my understanding, we are still learning about constantly...

Ther are Mast Cell stabilizers, eg Cromolyn . That really help. I've suffered for years with this.Good news there is help for it.

I was diagnosed with this a month ago. A great book on this is Don't Bet Against Ocam, by Dr Afrin.

I cannot imagine what you are both going through - having read up on MCAS, I can see that it is an extremely serious condition. Much love to Dianna - you are in my thoughts.

Sending ❤️❤️❤️ Please get better Dianna! Kyle you're the best, take care of yourself too.

Sending healing energy your way; this too shall pass, keep fighting Dianna; it will be worth it in the end.

I am sad that she has been feeling worse and I hope she will feel better soon. Love to you all from Sweden.

There are others that are not so intrusive as well. My thought is Reiki & similar, long distance healing that can be done from outside your home, so is not at all intrusive... Any Reiki practicioner (professional or amateur) would need Kylie & Dianna's permission though to send healing Reiki

I really hope she'll get better soon, wishing you guys the best. Stay strong!

My goodness but Kyle looks like he's not well. This has clearly been devastating for him, too...PLEASE take care of yourself, too, Kyle! Much love to both of you and the entire family.

Dear Kyle and Dianna, My heart goes out to both of you. I wonder if acupuncture or hypnotism would help with any of the symptoms. I saw what Scotti and Amy wrote. Fingers crossed, Xolair would work for you too!!! Lots of love, Sasha

Just to wish you both all my best wishes, its heartbreaking 🙏

My heart is breaking for Dianna and Kyle.I wish there was something we could do beyond words and money. Thinking about you both often.

Huge hugs to you. I hope the situation will improve soon.

Wishing you all the very best. ❤️❤️❤️

I am stunned that anyone would have to deal with so much. 💪

I'm so sorry for what you all have to go through. I wish there was more I could do to help you but just know Dianna loves and appreciates everything you are doing for her.

Same here. We'll stay here regardless. Give us updates as you're able and willing.

Thank you for the update. We're standing with you both and look to more healing.

I really appreciate the updates but I hope this is more of a "want to do" video than a "have to to video". Idk if Patreon has upload requirements but I would still be giving money without the updates. 💜 Heal well

Hoping for the best.

My family has MCAS. Two of us were prescribed Xolair shots to help with it. It made a HUGE difference for both of us.

Sending you both so much love and patience. Please know that so many of us are thinking of you and hoping for the very best possible outcome. <3

Thank you for sharing an update. You're doing great Kyle and glad to have read in the text update that Dianna is feeling a little better this week. Just got to keep getting through those hurdles. My thoughts are with you two.