♡ New diagnosis: My Immune System Problems! | Amy's Life (28th-29th.05.19)♡

[@olivedog1880]

Rest In Peace Amy. U will be missed very much. My heart goes out to Tom, your family and friends.

[@filizmely]

I don't struggle with any serious physical illnesses, but a couple of complex and severe mental illnesses. And eventhough I can't relate to your physical struggles, seeing you fighting and mastering life is so so helpful ❤ thank you for sharing your journey!

[@HollyGrace90]

Hi I saw your comment and thought I would recommend The Thrive Programme. Just do some research, it might be something you're interested on or might not be. I don't know where you live and whether it would be available to you but it's been very helpful for me and I've had very bad mental health since I was 11. It's really helped me make sense of everything in my life. Best wishes 🤗

[@NeemaAndGame]

Mental illness can be chronic! My Anorexia caused me to be severely aanemic and in need of a feeding tube because of gastroparesis!

[@HollyGrace90]

@@NeemaAndGame I'm so sorry to hear that. Sending lots of love 🤗

[@filizmely]

@@NeemaAndGame sorry I didn't mean to say that mental illnesses can't be chronic. I meant to seperate between physical and mental illnesses but somehow confused it with chronic illnesses. I'll correct it rn

[@SamirCCat]

@@filizmely I have bipolar disorder (among other things) and that's 100% chronic and incurable. I know I will have episodes again, just not if they're gonna be bearable or really bad. And I have chronic dysfunction that prevents me from working and leading a "normal" life. Never have. I love watching Amy because it reminds me of my own life, which is 70% illness and the rest happy distraction and sleep. I feel less abnormal watching Amy

[@alexandrashank]

In layman’s terms it means your immune system doesn’t form memories so you never actually build immunity against anything. Your immune system acts as if it’s encountered something new every time you’re exposed to any bacteria or viruses. My best friend has it. She gets treated with plasma infusions here in the United States.

[@ClutchEqualsHome]

Alexandra Shank I have CVID with low IgG/bad IgG subclasses . I infuse human plasma weekly. It sucks being sick all the time! I hope your friend gets better even though there’s no cure!

[@breonawarren1507]

I believe (correct me if I’m wrong) this could be solved with a bone marrow transplant

[@MissaLVT]

@@breonawarren1507 no, there is no cure for it.

[@minniemoo3148]

Does that mean stuff like vaccines don´t work either?

[@hayleywhiting2843]

@@minniemoo3148 exactly

[@Christinesobsevations]

Here in 2024 loving Amy’s soothing voice ❤❤❤

[@SimplySarah93]

Happy that you have a man that supports you and understands you and loves you the way you are 💕

[@lashawnablanton4649]

Yeah she's blessed to have that and the support. I haven't found a man yet that has been supportive of me and my chronic health issues. I'm sure it has to make life so much better

[@JixieDyeAuthor]

@@lashawnablanton4649 I feel your pain. I would love a guy who was supportive of me as well but NOPE.

[@MissaLVT]

@@lashawnablanton4649 I haven't found one either. Makes me think that maybe there's not a guy out there for me...

[@holiday-td6hx]

@@lashawnablanton4649AND Jixie Dye (and others) Be Patient...remember you don't have to "settle"....guys (and gals) who are willing to take on someone that is chronically ill are out there.....trust me. ********************************************************************************** There are people out there that do understand and have no problem loving a person with chronic illness. My first DH passed away in 2002, and I met a guy (through a friend) that has been absolutely wonderful with me. When he started talking marriage, I told him "You need to think about this. Signing up to this crazy life of mine can be stressful." To which he shrugged his shoulders and said "Really? If I didn't want to be here, I wouldn't. I have no issues with you being chronically ill and it makes no difference to me really." He also told me that he appreciated the morals and values I was trying to instill in my teenage son at the time and therefore agreed with me that living together wasn't something he was willing to do, and we became engaged and married within the year after our "talk". Waiting for Mr. Right to come along is worth it. You might have to kiss a few toads before you find the "one" but it is worth the wait. Did I think I was going to have not one but two amazing DH's in my lifetime? No, but it happened!

[@Christinesobsevations]

SimplySarah yes she is ! I’m chronically ill too and would be so grateful for this

[@JessRey01]

when you get blood on something, run it under cold water straight away and it'll help get it out! works for period stains too, as long as you rinse it straight away.

[@juliabade5776]

The best way to get out blood stains is to soak them in water with some aspirin.

[@paincreatesfame]

Hydrogen peroxide can also help!

[@emmaonthefarm1085]

Cold water and salt 🧂!

[@melanie_kay_6014]

"Tell them I love you." Tom: *avoids eye contact* "I like you." xD

[@Sanderka5]

I don’t struggle with any chronic illness but I suffer from anxiety and panic attacks, it’s nothing comparing to what you suffer with. You really make me stronger! Seeing you fighting all the time is so helpful! You still laugh, smile and live! I love you girl! You’re the strongest girl I’ve ever seen! (I never comment on anyone’s videos, but I can’t stop commenting on yours haha)

[@malissacoufalik5975]

If you put peroxide on the blood before putting in the wash it will come out good

[@MissaLVT]

@my CBD life really? I've done this for years with animal blood and scrubs and never had an issue.

[@ellenbedford3888]

A bar of Dial soap rubbed on the blood works great.

[@tigerseye99p]

My heart is breaking that you have another medical issue. However I am glad they have given you a diagnosis and there is a possibility for treatment for you. I struggle with chronic pain and I understand the pain portion. Although yours is probably much worse. I get the passing out from the pain as well... you are such a beautiful soul and person. I wish you the best health always!

[@lindseyquennell1457]

Hi Amy my name is Lindsey and low IgG and Hyper IgM fall under the umbrella of Common Variable Immune Deficiency and they are most likely going to start you on IVIG which is once a month immunoglobulin injections. It surprises me too that your doctor didn't check into this sooner as it is very common for people with CVID to also have autoimmune issues as the two go hand in hand. I myself have CVID and have no IgA and IgG subclass 2 defiency and was on sucutaneous immunoglobulin treatments once a week but two years ago my Infectious Disease doctor pulled me off of my Immunoglobulin and I have been fighting to get back on my immunoglobulin. After they start you on this and after about a year of immunoglobulin treatments you will feel less tired. Hope this helps. Love your channel. Keep on keeping on.

[@christienbbrooks7334]

Thank you so much for sharing your journey the good, bad, and ugly. I have autoimmune issues my body doesn’t seem to like it self 😊 anyway I have g.p and I have a tendency to pass out from pain and I have stayed out from like a 45 seconds to a minute, but if I can’t gets really bad again I will pass out again. It drives me crazy. I have like no immune system so I will get anything bug that’s going around. I really hope that you get to feeling better, and thank you so much for all you do and bringing awareness !! Thank you

[@jenniferw1595]

Love you both! Thank you for bringing awareness to gastroparesis and digestive system paralysis ( which I have).

[@jena6529]

Please do show the hard times too. If you have never been around another person with EDS there is nothing to relate to. It helps, it really does.

[@tabbybunapologeticallyme7443]

You're doing amazing, unfortunately I've not got any info on this condition but I'm going through a period of time where there isn't a day where I'm well. I have no official diagnosis yet, we're looking into behcets, sarcoidosis but I've got severe erythema nodosum on my legs and it's agony, painkillers aren't working very, it's all relentless, mouth sores, inflammation in my mouth, ulcers and more ulcers, fatigue etc. You said I about being normal unwell or something like that, like most people I felt that today. I sat and cried because living in fatigue and pain can get you down but watching you, helps me to keep going. I am scared because I've got so many things going on medically, I've two beautiful boys to look after,great hubby but I try so hard to be a normal mum and then, I crash and have to sleep for a day because I've tried so hard to be like everyone else. Hope this is the answer for you. Hugs xxx

[@joanneallion1195]

I have fibromyalgia and severe osteoarthritis and if I stand up to long and then I sit down I get like a weird rush and I nearly pass out but thank god I haven’t yet but they are getting quite frequent now, I love your positive attitude and you try to keep on smiling but obviously it gets to you and you have a bit of a wobble but you pull yourself up and keep carrying on and I admire you a lot for that xx❤️❤️🕉🕉

[@alicepacheco8960]

I'm not a professional, just a student, but I believe that IgM is the first immune response your body has when it's infected, it's more generic and can fight lot of different infections. With time your immune system produces IgG in response to that especific infection which means that your body is now able to fight that infection more effectively. So when you first get sick the levels of IgM tend to increase and with time they should reduce and the levels of IgG should increase. So every time you get in contact with some pathogen that you've already been infected with in the past the IgG for that especific dissesse should stop the infection from spreading and you geting sick all over again, in your case your immune system does not produce the IgG properly and that's why you get so often. I don't know how bad it is, but when a person gets older the tendency is that the production of IgM reduces and the production of IgG increses, the logic behind this is that the older one individual gets he should've already had contacted with disease to produce enough IgG to protect his body so the production of generic antibodies such as the IgM should decrease. But anyway, I hope it's not so bad and the treatment is simple. Good luck! (I'm sorry if there's some English errors, it's not my frst language)

[@72bslade]

Correct!

[@ankevanzyl1982]

Speaking my language.. I'm a medical technologist... 😊. Girl you are soooo strong... 💪🏻💪🏻

[@heatheralice4572]

I Haven't passed out from pain before but I have Primary Sclerosing Cholangitis and Ulcerative Colitis, both cause really severe pain and usually my response to pain is either crying and going really quiet and not being able to move. I'm really glad I found your channel. Obviously we don't have the same medical conditions but I can relate a lot to the pain and nausea you struggle with and my immune system is very poor also. My Dr recently told me I will need a liver transplant within 5 years so I've been thinking about making a youtube channel to document my journey to transplant and to raise awareness about life with Primary Sclerosing Cholangitis but I'm a bit nervous to start sharing so much personal information online, I really admire your courage for doing that. Thank you :)

[@teremertz]

I have passed out from severe stomach pain, several times over the years. I have found that forcing myself to hyperventilate and breathe rapidly keeps me from fainting by oxygenating my blood. I force myself to breathe through the pain, because I tend to want to hold my breath ❤️

[@sbill474]

I love watching your videos! I’m disabled and there isn’t much to do! I’m the person that loves working. Being disabled is probably the worst for me! I had my gallbladder removed and it took four surgeons 4 hours to get it removed they said I was sick two years. They left my five inch cut open. I have to say that hurt worse than anything I went through until now! I think I’m a wimp compared to you AMY!

[@MissHolliday3110]

Stay strong girl! I know it's discouraging with every new problem. Having an answer doesn't get rid of a problem, but it is empowering.

[@emilietaylor4654]

My sister is actually diagnosed with, what I’m pretty sure is, the same thing, she is CONSTANTLY sick, and if this is what I think it is, your body’s immune system is struggling to build up enough immunity to fight off infections. She actually had to switch to online schooling due to the amount of times she gets sick throughout the year. She is incredibly fatigued all the time, so that may be why you’re feeling so tired and lethargic lately. There is an option to begin infusions via shots that can help build back up your immune system, but once you start them, you unfortunately can’t stop them. However, since you have extensive experience with medical equipment and such, you may be able to do the infusions yourself! Just some insight💗 Keep being the incredibly powerful and strong individual you are. Much love from the US💐

[@kaylaquick590]

Emilie Taylor what was her diagnosis if I may ask? I have something that sounds like what you’re describing; Autoimmune Neutropenia (my immune system creates antibodies that attack the neutrophils killing them which causes me to be prone to infections) .

[@emilietaylor4654]

i’m unfortunately not exactly sure of the specific diagnosis. i just know her symptoms. i know it is categorized as an immune deficiency and she has specific track deficiencies. 🙁

[@emilietaylor4654]

i’m also incredibly sorry for what you’ve been dealing with. i know, through watching my family go through it, that these conditions are horrific and very discouraging. stay strong girlfriend. ❤️

[@kaylaquick590]

Emilie Taylor thank you so much, same to you, both the people with the chronic issues and the families/friends need to stay strong ❤️ it’s not an easy thing to go through but I know we both can get through it

[@emilietaylor4654]

❤️❤️❤️

[@lemondew8138]

I have issues with very low IgA levels, IgA nephropathy, Hashimoto, lupus, mixed connective tissue disease and probably Pots( waiting on cardiologist). I'm on strong immunosuppressants to stop things from getting worst/more damaged( and lots of other medications). Something that's been helping a lot to stop constant infections is an air purifier. I have 1 in each area that I spend a lot of time in. They are the kind that have the UV light like hospitals to kill bacteria, mold, viruses, pollen, dust, etc. Something simple but can have a big impact on thing!

[@jessykak2399]

I have Fibromyalgia and pass out from pain on occasion, especially when in a flare. It's not fun but usually it's not for too long. That and then there is times with the chronic fatigue that my whole body literally just shuts down, sometimes it feels like passing out but lasts longer. Hope you feel better soon sweet xo

[@ambarrose]

I've fibro too and I feel like I'm constantly tired. I just push through it all the time. Nobody seems to notice. Not even my boyfriend realizes it most of the time. Which I like in a way but I hate it in other ways. Because them, when I get completely exhausted everyone is super surprised. Yesterday happened that I was sound asleep and all of a sudden the nerves on my leg locked in a certain position and it was so fck... painful. I woke up in a haze of pain literally.

[@jessykak2399]

@@ambarrose Yeah, I know what you mean. It can be so hard sometimes when no one really understands. But you'vegot to allow yourself to rest as well. If you ever need someone to talk too, feel free to message me. ^_^

[@janegreen9378]

I hate seeing you in your 'downs' but I appreciate you sharing them, its life!

[@Zoe_EK]

Hello Amy😊 I am a biochemistry student from Germany and I can tell you what it means from a theoretical/medical point of view (referring to your new diagnosis): So basically antibodies structurally consist of a heavy and a light chain. Furthermore they do have a constant and a variable part that is crucial for the specific adaptation to a cargo/ antigen. This variability is maintained through a gene rearrangement of the chains (especially important is the variable part for specific targeting). Beyond that every B cell (antibody/immunoglobulin producing cell type) usually starts out with the IgM receptor on its surface because at first every B-cell receptor uses the IgM constant chain as a basis. So in order to produce every other antibody iso-type the body needs to be able to undergo a B cell maturing process called "iso-type switching": the constant chain is switched to the specific chain of the antibody iso-type. The IgM-IgG switch is indeed a very crucial switch as the IgG antibody is basically one of the most important antibodies as it primarly acts out the defensive immune response. So as it seems that this exact process is hampered, it leads to an inefficient and weak adaptive immune response. As your body cannot defend itself properly against specific antigens this results in constant infections. I hope I could clear things up a bit! Sending lovely greets from the northern half of the globe :p

[@norajung4513]

About 6 year ago I was told I have an undiagnosed autoimmune disease. They are monitoring me twice a year to see if I have any changes. The check my ana, ss-b, ss-a, Ron and Smith antibodies to see if I develop sjorgens or lupus. I also have to be check regularly for my thyroid. I have an overactive thyroid. So all that gives a whole host of issues. But I concur and move on. Living life to the fullest.

[@lovinglife4264]

Amy, your Channel is very addicting. I am so glad I ran across your channel. Stay strong we are fighting with for you from Texas💪💕

[@nicolepereira3750]

Tom is a saint and you are a warrior! 💪🏼💪🏼 ❤️❤️

[@keshleyjustine8616]

SO PROUD OF YOU. YOU'RE SO STRONG. ILOVEYOUUUU❤❤

[@Rainehunkin]

I Don't have any of your illnesses but I still watch every video you make to support your channels. Tom's "things that make you go hmmm" are the best lol. 💜

[@weaanie]

As a body piercer I have clients pass out weekly, they’re usually out from 10 - 60 seconds.

[@MissaLVT]

Does it tend to be from a certain piercing or just random?

[@lytamcdonald1184]

@@MissaLVT more or less a vagus nerve stimulation which tends to make you pass out. some people are just more prone to it or other people have certain triggers like needles. needles is a very common one. so TLDR: it can be both.

[@MissaLVT]

@@lytamcdonald1184 yes, I know that. I was just wondering if it was completley random or if a certain piercing it tended to happen more to.

[@kerrimcvinney6081]

I have low igG and igA levels. It goes along with my common variable immune deficiency (CVID) and methemaglobinanemia. I have been getting IVIG (iv immuno globulin) for about 3 years now. I got a port a Cath so I could get the infusions done at home because they're montly and take about 5 hours to complete. It's to try and help my immune system help fight off some of the infections I get. If you ever wanna talk about that kinda stuff please feel free to! I'd love to hear from you ❤️

[@rachelel9087]

I've heard IVIG is very helpful. I was curious how long it takes, because I get fluids 2x a week via my port (port pals!) and one time someone was getting IVIG (how freaking sad is it that I can look at the IV pole and basically figure out what the person is getting based on what the bag/s look like). Anyways, they were there FOREVER, so I wondered how long it took. 5 hours, damn. I guess I'm glad my doctor decided I didn't need IVIG for the time being.

[@kerrimcvinney6081]

@@rachelel9087 it is Insane but if they give it too fast your body can reject it and you'll have an allergic reaction. I'm just soooooo glad mine is at home now. I spent over 2 years once a month getting ivig in a cancer treatment center and it was quite uncomfortable to be there so long.

[@alhorner213]

Do you do IVIG therapy? I'm a pharmacy tech and we work with infusions IVIG being the main therapy we provide. We work with patients that have immune issues. IVIG does alot to help them.

[@lisaioannou6758]

Stay strong. Sending good vibes. 🥰

[@kellymyers7506]

Any time I pass out because of pain I wake up in a panic not knowing where I’m at. It’s just really frustrating to not get any relief from pain no matter what I do or what medications I take. Thanks Tom now that song is stuck in my head!!!! LOL

[@karlafielding1200]

‘Old town road’ is all my daughter plays, on repeat at the minute. Got to admit I find it quite catchy.. Hope Tom’s trousers come out ok and hope you feel a little better soon.. Sending lots of love from the U.K xx

[@AestheticallyAmber]

I don't usually comment on videos, but I love you Amy, and I thought I'd show my support for you ❤️❤️ I have an immune disorder but not as close to as severe as yours. I definitely understand the being sick constantly. I've had a constant cold/flur for the most part of 2019 and was diagnosed with GERD on top of that 8 months ago. Wish you the best of luck ❤️❤️❤️

[@kerryhorrocks4453]

I’m new to the diagnosis of eds I kind of thought it was it but I’m not a doctor I have just been diagnosed and it’s all new and a shock ... You and Tom are crazy together it’s like me and my hubby x

[@gordonwybo898]

Kerry Horrocks welcome to the club

[@kerryhorrocks4453]

Gordon Wybo it’s a club I didn’t want to join but I knew it deep down but I’m sure none of you want it either no1 deserves suffering how you are ok

[@gordonwybo898]

Kerry Horrocks groups like this do make it a little easier. It’s nice to know you’re not alone and you may pick up hacks that help you out.

[@kerryhorrocks4453]

Gordon Wybo that would be helpful I came across amy random after watching chronic illness having rubbish health I just feel like I’m a strain on everyone I always had hobbies I used to dance loved it it takes so much away from you it leaves you lonely I haven’t yet joined any eds groups but I am going to

[@mixpeace1375]

I regularly pass out from pain, and that lasts longer than anything else. I don't panic when I come to because it's more frequent than any other type of passing out I do. Luckily my husband knows, and since he takes care of me he knows how to handle it.

[@malek88561]

Rest In Peace Amy . ❤️🙏🏻

[@terrihowell3584]

First let me say that you are a very courageous lady!!! My daughter passes out from pain. She has kidney stones a lot and the pain is unbearable.

[@cathcoll7961]

Yay Bullet Journal I have ordered mine So excited to start it

[@Hazelbazel483]

Hey Amy! I'm a certified Medical Laboratory Technician and I had to study Immunology. IgG is basically a type (class) of protein in your blood that function as an antibody. In fact, we have 5 classes (IgM, IgA, IgD, IgG, IgE). Each one is apart of our immunity. *IgM* is found in your blood and lymph fluid and is the first antibody your body makes to fight an infection.* IgA* is found in mucous membranes lining the respiratory and GI tracts. *IgD* is the least abundant and isn't really understood in medicine. *IgG* is the most abundant antibody, which is found in all your body fluids and protect against viral and bacterial infections. *IgE* is found in your lungs, skin and mucous membranes and is associated with allergic reactions. In your case, Hyper IgM Syndrome is when you have a decrease level of IgG antibody and an elevated or normal level of IgM antibody in your blood. IgM and IgG works together to fight infection. So because you have a deficiency in IgG, your body can't fight off infections as well. I hope this was helpful.

[@hannahwilliamson6477]

I get close to passing out from pain and the same with standing up too quickly... xx

[@sylviawilson8769]

Thank you for being real. 🥰

[@maryreynolds5310]

I’m glad they can finally put a name to what you’ve been going through. xo This is a good thing!! :) No, I don’t pass out due to pain, but I do though, or can pass out because I’m dehydrated. Happens a lot to me unfortunately. Feel better Amy...I love ya~

[@22lisahippo22]

Tom made me laugh a lot when he wasn’t letting you talk at the end. Thank you. Also I passed out while falling down the stairs one time. My only time I have.

[@aricakathryn1519]

Hope your feeling relief sorry u go through alot I have health problems myself it sucks but I feel u handle your illness so well cant wait see new episodes have good one

[@sarahwarwick1166]

I love that you talk to your pump like a person

[@DarlineFayette]

I do pass out when I'm in a lot of pain. I could stay in KO state until my husband helps me wake up although it can go from 30 seconds up to minutes or even hours if I pass out after a seizure (aside from EDS I also have epilepsy). Luckily for me I have not had the need of any type of feeding tube although doctors have tried to feed me through the veins in certain situations (which would burst after 5 minutes or so). I hope the change of tube made all of the ordeal less painful and stressful for you. Best of wishes.

[@lauraprkr]

Your nails are always pretty!!💅🏻

[@bzzwiebel963]

Hey girl from Australia-how do you get along with all the creatures who live on this continent. I can only imagine how difficult it must be to struggle with this awful illness. Especially that you get reminded of being sick every minute of the day. I have asthma (eight times in the hospital) and bipolar which sucks at times. Hence I totally empathize with your life's challenges and give you a thumbs up!!

[@elliewaters997]

I can’t be the only one that sings the “yeah” In the intro 😂

[@rodneygalbraith4793]

Sorry about your pain. Best thoughts going out to you both.

[@mandi2897]

Hi Amy! Yes, I was diagnosed with an unspecifed Igm and Igg disorder and am being sent to a research hospital as my team realizes there is so much they are missing and know my body needs help soon. For now I am on immune system infusions and will let you know when and if they are able to give me answers. Sorry for typos, pain, and typing dislocations are outrageous today!

[@lanagirll]

Mandi look into Lyme disease

[@kacietamplin7228]

I pass out from pain too it’s not very often because I’m constantly in pain. But when it does It usually lasts for about 1-3 mins from what I have been told.

[@Christinesobsevations]

God bless you both. Tom, you are amazing with Amy !

[@lottiatbeaniecodesigns4681]

Bless your heart, I don’t pass out as such but I go very hot and have to lie down as I feel very sick and then fall asleep very quickly and will sleep between 3-4hours. Feel better soon Sweetie. 🥰🇬🇧

[@bethlelievre3620]

I have low IgG...I am going to be getting high dose IVIG to help with that and it should help with my SFN and POTS. I am getting 3 weekly infusions every 4 weeks. I would talk to your immunologist about IVIG. It could help with so many of your health issues. Best of luck!!

[@roblisa100]

Awww poor girl! My heart goes out to you!!!! Just love you xo

[@lorileewalters2018]

Bless your heart, my heart goes you to you!! I have several issues going on and am in pain daily but nothing like you go thru! You are such a special young woman, love, hugs and prayers to you sweetie💗🧚‍♀️🙏🎀💐🌞🌻‼️

[@ceryswilliams4755]

Hi, I have CVID (Common Variable Immunodeficiency) which I think is similar to what you're describing (I have low igG and igA). Treatment involves either IVIG (intravenous immunoglobulin which is probably what you're most likely to receive) or SCIG (subcutaneous immunoglobulin). SCIG I do once a week by myself and it goes into the fat of the thigh/stomach. IVIG is once a month and for a couple of hours but you have to go into hospital for it and it takes awhile - this didn't keep me stable and I had a lot of side effects with it. I know this is not exactly the same but the treatment might be similar:) hope this helps x

[@princesspreacious5009]

I like to pray for this young girls life

[@abbichristineee]

I’ve been on 20 antibiotics in the last year so I understand your pain!! My immune system is so shot. I think I’m going to call my doctor & ask to get tested for that disease you got diagnosed with because I have constant infections. Love you for educating us girlie!! 💖💕💖💕

[@tisungeterror]

I pass out from pain! I haven't in a while since my pain has gotten better. Love your vlogs ♡ you inspire me to keep making my own chronic illness vlogs.

[@kalisamagalski7804]

I had my gallbladder removed in March. A week post removed the outer bandage and nearly passed out. I also start blacking out when my anxiety gets super high, can recognize most of my pre anxiety attack symptoms. Stars, narrowed vision, plugged ears.

[@jessicah3450]

I have low IgG and it means vaccines don't work as well as they should. It also makes me more likely to get respiratory infections. I have already had to get sinus surgeries and my lungs show damage from bronchitis and pneumonias. My childhood vaccines had to be redone in my 30's that should be lifelong, I take prophylactic antibiotics, and need more frequent vaccine schedules. Not sure how high IgM affects her, but early infections usually make IgM antibodies, and older infections create IgG, like more of the memory immune system involved. IgG indicates the infection was longer ago, it's also the body's main antibody.

[@HollyGrace90]

I don't know if you have it in Australia but in the UK we have something called first defence, you basically spray it up your nose when you think you feel the first signs of a cold starting. You spray it up to 4 times a day and it stops the cold from developing, it works wonders and has prevented me from getting a cold the last year now. Try and find it, it will really help you, if you sprayed it every day morning and night it would then keep you from getting colds. As I say, it really works for me and my family aswell. Love the vids, you're awsome and you push through everyday with just determination 🤗 big loves

[@lenac7655]

I had two or so days of feeling sick & weak. Pain ruling the days. So I can relate to your rubbish days. Just under the comforter and resting. LOVE Tom's "Things that make you go...😍

[@jimhull4885]

I have eds also and have been on ivig for years foe immune problems. One huge unexpected benefit was that it helps with the pots. Hop you feel better soon

[@rachelel9087]

Does it?! Hmm.... interesting. I'm going to bring that up at my next doctor appt

[@ButterflySimmer]

I never really had really bad pain, but no pass out from pain. But I sometimes nearly pass out if I really hot. Once during my science practical I nearly pass out as everyone use a Bunsen burner (a burner that has a constant flame) and I felt so dizzy. I had to sit down for 5 minutes, fortunately I didnt pass out, but just really dizzy. I hope you feel better soon and get some treatment for your new condition.

[@emilycorchado8500]

The episode of things that make you go mmmh. Are actually interesting 😁 i love that you include them in your video too

[@kaikai7886]

I have pots and I don’t tolerate pain well but I haven’t passed out yet, I’ve been able to catch myself right before and like sit or lay down until it passes!!

[@lisarichards7263]

I get horrible pains when I'm on my period and it causes me to pass out sometimes. That's the only thing that's done it for me so far.

[@UniqueSouls]

I pass out from pain... I'm so happy it's not just me and people in movies haha

[@julianderson8708]

My daughter used to pass out from pain. It happened a lot. We use to take her to the Er sometimes when it happened and the Er doctors thought it was psychological, of course. Her neurologist told us it was from pain, it also caused seizures.

[@AllThingsFitnessandLifestyle]

I had high IGM when I had the flu, but they get high whenever you get sick. I had a cold and a month later had the flu from my son. but we have been fine since December. I just deal with a constant sinus infection because of a bad tooth.

[@EvilPeanut1102]

Blood splatter was like a scene from 'Dexter'! x💜x

[@rebeccadaintith7846]

I love your videos! It’s good to know that I’m not alone in this chronic illness journey

[@JixieDyeAuthor]

Ugh gurl so sorry for you. I have an immune system problem too. I was born without a pituitary gland and so the hormone that's in charge of my immune system just is NOT there. Consequently I basically pick up everything that is going around. I feel your pain.

[@OuchMouse]

Twice. A very specific abdominal pain and I have no idea what it is yet because it's been a while. But it happened once while someone was talking to me. Well, he was mansplaining my own research to me, and how it was wrong (it wasn't, I promise). And when I came around he was stood over me still talking. But for me, passing out from pain is so different to my regular passing out. When there's no pain it's just kind of a "fuzzy, I'm going down" kind of feeling, but when it's from pain I seem to fight it more, I get all sweaty, shaky, chills but also overheating, and I actively try to not pass out. Keep being awesome! :)

[@TheFindingMiah]

Amy!! I have the same immune syndrome. We do IVIG through my picc line (your hickman) and they honestly make me feel like ASS like thats the worst infusion i get, but i do get cold/infection sick less. Also wear a vogmask almost everywhere. Clean the mast everyday and change the filter ever 4-5 days. and Strict hand hygiene. like dont even touch your face unless you’ve just cleaned your hands well. Hope this helps.

[@allisontrimble3393]

Hi! Love your videos. I have Mitochondrial Disease, which can come with POTS, Elers Danlers Syndrome, Mast Cell... basically, a whole host of other chronic conditions. I had to have a heart transplant when I was 16, so my vasal nerve has been severed. Because of that, it's impossible for me to experience that response. But I have a ton of pain from my disease...muscle pain, and often end up with Rhabdomyolysis. The pain is awful. I also think I have slow/no GI motility. Can I ask, how did you get that diagnosed while on pain medication? Anyway, keep up the videos! It's wonderful to hear from another young person dealing with chronic issues.

[@thechickwhocritfails]

I have POTS, Addison's disease (autoimmune disease), PSVT Cardiomyopathy, and factor 5 liden mutation. I love watching your videos you are so strong and positive

[@deniz_dee]

Not sure if it was from pain or procedure itself, but I once almost passed out from getting an infection sucked out of a bad tooth cavity as preparation for a root canal. I was going to go back home afterwards with a tube to let the remaining pus out for a few days and take antibiotics to stop the infection before getting the canal. I managed to walk from the dentist chair to front room only and had to sit down trying not to pass out but I'd already lost my vision. Luckily my dentist noticed and gave me some syrupy medication and I was completely okay in less than 5 minutes. Never learned what that syrup was since I was confused about the whole experience though.

[@MissaLVT]

I have numerous illnesses that cause pain the main one being Syngomyelia which causes cysts (called Syrinxes) to form inside the spinal cord. It's extremely painful if I'm on my feet or sitting for very long. That pain and Endometriosis and ovarian cyst pain can cause me to pass out. But it has to be really bad for me to pass out. I'm also heat intolerant, I pass out if I get too hot. Not sure how long I stay passed out.

[@rebeccarudolph6757]

I have something similar so I feel you, I catch everything They have me on an antibiotic 3 days a week to try and keep me from getting so many sinus infection As imino diffincies go it not a terrible one but it is definitely impactful on your health and should be counsidered when talking about treatments

[@footsoldier508]

I know those are for your joints but they look really cool like rings haha love the nails ! Hope you feel better than you have been ❤️❤️

[@alysonjade2461]

I’m sorry to hear you’ve got another diagnosis to add to your list, but maybe putting a name to it will allow for better care going forward. And hopefully that helps lessens infections and sickness in general. Hope you hit that baseline or just start feeling so much better very very soon!!!

[@nanaosaki5897]

My immune system sucks but it’s because when I was an infant I had something called autoimmune haemolytic drug induced... I catch everything because I can’t do any vaccines even the basics ones and I can take only a very few tips of meds.. so when I am sick I have to wait and hope that it will pass naturally because I can take only one type of antibiotics and I cannot take any pain killers or my immune systems will freak out again...

[@leaveitalone]

They might want to to IVIG infusions for treatments. My 14yo has Hypogammaglobulinaemia similar with low igg. He was always sick. But after a few years of monthly IVIG he has been heaps better.

[@AlintaMcMurdo]

The good thing about low IgG is that it can easily be supplemented with plasma transfusions. It’s really the best immune problem to have, as it is the treatable one - is you’re going to have an immune problem anyway. I’m deficient in NK cells too (on top of Ig problems) which is even worse. I’ve thankfully got an immunologist that is a specialist in this. He did the study that showed the NK cells are the worst to be deficient in. Without them, you’re much more likely to have life threatening infections than being low in any other immune marker (plus the whole more likely to get cancer thing). I have to wear a mask out of the house whenever I go in public. It’s uncomfortable and isolating (I mean I’m rarely well enough to get out, so it sucks to be isolated when out too). But it’s that or getting something like the flu or pneumonia which is far more likely to kill me than anyone else.

[@WorthyMissJ]

The immune system problems were the first thing that had me and my doctors looking into rare things like lupus and eds. In 12 hours, I went from asthma attack to gastritis to full blown double pneumonia in both lungs and nearly died! I was initially told I'd be deceased by age 30. I'm 45 and still going, just have to be very careful about the slightest sign of infection. It basically means your immune system is exhausted. With me, I have to take a low dose of levaquin (antibiotics)for ten days a month and a low dose of antivirals for the ten days following. I also have developed iron, magnesium and potassium deficiency because of it and take a multivitamin as well as extra of those three. It's not foolproof but it does help. Also, if you have your tonsils, GET THEM OUT! I cannot stress this enough! You'll catch less colds and such, even if the tonsillectomy is a horrible, rotten, viscous thing to go through as an adult! Once it's done, after the pain is gone, you won't have things like the little sniffles and sore throats. You'll only really get the worst ones like pneumonia or strep throat. Yes, I pass out from pain! Not the best experience but it happens. The scariest one is when I had leg cramps, they got so bad that it made me physically I'll.being diabetic, we went right to the emergency room to stop the vomiting. The leg cramps spread up into my thighs and hips, into my ribs and I passed out as I was throwing up! When I came to, I was told that the pain had caused me to have a heart attack! So, yeah! Pain is NOT my happy place AT ALL!

[@courtneysutton4291]

Hyper IgM means your body is deficient when making antibodies when exposed to specific antigens that cause infections. Normally your body would be exposed to an antigen and create antibodies for it so you’ll never have the same illness ever again. Although this hyper IgM syndrome is interfering with the production of those antibodies to defend your body from the same antigen.

[@JenniferBeckers]

Please please do show your difficult moments. It makes us other chronic illness sufferers feel less alone.

[@sherrichabino1317]

Amy I just love watching your videos and learning things that can help with my chronic illnesses also. Thank You so much you and Tom are Awesome!! I have MCAS also along with Lyme and co-infections. Are you doing a treatment for MCAS that is working? I am down to 2 foods and allergic to most meds. My GI is concerned if I need a feeding tube that the smells that happen will trigger allergic reactions. Have you had any issues with your tube like that? I hope you can find some answers soon on the new diagnosis and I am so happy you found a doctor that you can trust!! That's more than half the battle.🌸☀️

[@crystalr9633]

may I ask how were you diagnosed with mcas? and what are your symptoms?

[@sherrichabino1317]

@@crystalr9633 My GI suspected I might have it first years ago but had bad experience and stopped seeing him. I was triggered again severely when I had a cat scan with iodine contrast. Lost all but 2 foods after that. I was later diagnosed by MCAS specialist. I started the Gupta program over a year ago and I now I’m a lot better and eating several new foods.

[@haileytobman4874]

I don't pass out from pain but from even just mild heat

[@pauldevery6173]

While I didn't pass out from the pain, I did have a case of going into shock from pain. Don't tell Tom, but I was getting a urinary catheter inserted when I was in Intensive Care a couple years ago. The pain made me go ice cold despite already being on oxygen.