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My Mystery Diagnosis: 5 Year Update - Some Answers, More Mysteries. 

DMConner
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Five years ago, I posted a video describing health problems I had been experiencing throughout my 30s. After a dozen medical specialists, I had few answers. Ultimately, I was diagnosed (again) with Lyme disease and Bartonella--both infections from ticks--and later I was also diagnosed with mast cell activation syndrome (MCAS), an allergic disorder that in many cases co-occurs with Lyme disease.
Now it's 2020, and we're in the middle of the COVID-19 pandemic, seven months into lockdown. I feel better than I did five and 10 years ago, but I have some scary new medical findings that could be life threatening.
Thanks to everyone who has viewed my older videos and left comments. As I say in those videos, the reason I put these out into the world is in the hope of providing some solace at the very least, and potentially some leads, for anyone who is going through anything similar. When I was in my darkest place physically, emotionally and diagnostically, videos posted by a young woman with multiple sclerosis helped me to cope with that I was experiencing. So in case you're wondering, my only intention with these videos is to try to do accomplish the same thing.

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18 сен 2024

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Комментарии : 15   
@aprilshealthmore8048
@aprilshealthmore8048 3 года назад
I watched both videos in full. I feel you on so many levels
@cambriatevis6907
@cambriatevis6907 3 года назад
You are amazing, really. I loved this video. I watched all of it. I already commented on your other video but wanted to say something else here. Having recently learned more about mast cell disease in the last few months, I am absolutely distraught by the implications of mast cell involvement in such diverse diseases. This video perfectly encapsulated the feelings that have I been having over the last couple months about this especially as a medical student. I loved how you pointed out in the other video that there is this misconception doctors have that psychological issues are separate from physical issues when especially in mastocytosis they can stem from the same cause. I hope that with time and with education physicians can start to see that there is no separation between the body and the mind. Also I am wondering how you know you do not have mastocytosis and just have MCAD. If you could please elaborate on that I would appreciate it. Thank you. Lastly, I am sorry to hear that you are feeling depressed. It is so hard right now and I just hope you remember that you are not alone. Currently, I am concerned that I might have an abdominal aortic aneurysm due to an increased pulsation in my abdomen. I will probably be getting that checked out in the next two weeks. Thank you again for this video.
@Sparklesandsuch123
@Sparklesandsuch123 4 года назад
Are you off all antibiotics for Lyme and have you been able to continue working through all of this? Sometimes it takes everything out of me to get through the work day but like you said I have no other choice 😭 I have treated Lyme on and off over the past year and a half with antibiotics and although a lot of my symptoms have improved I continue to have the same issues you do with left sided shoulder/arm/chest pain. My joints pop like crazy and sometimes I worry they’ll snap it’s so bad 😅 At this point I’m having issues too with my heart and arrhythmias plus my usual MCAS symptoms. I too am searching for what else could be wrong with me and doctors are pretty clueless.. I am considering EDS and maybe even Sjogrens as a possibility now as well. Please keep us updated!
@DavidMichaelCommer
@DavidMichaelCommer 4 года назад
Yes, I discontinued all antibiotics several years ago. My most severe neurological problems have resolved and have not returned. My allergic problems are stable more often than not except when I try to exercise or when I am exposed to high heat (85 degrees plus for extended periods of time), which usually is unavoidable in Washington, D.C. from May or June through late September. Because of home isolation this year, I have not been walking to work as I’ve done for 12 years and have been mostly sedentary. I decided to exercise very moderately at home, and that proved to be a major mistake, bringing on an extreme flare-up of scary symptoms. I’m back to being mostly sedentary, which is very unhealthful but ironically doing so has restored balance and has made me feel well again. So there I am. I’ll follow up with my doctor soon and we will figure out what kind of specialist to see next. I may delay making appointments, though, now that I know I am not at risk of a cardiovascular event. I do want to reduce the risk of exposure to COVID. Whatever is wrong with us, we can’t forget that we’re vulnerable to the pandemic and need to reduce risk as much as anyone. I have been to too many doctors’ offices (4x) and radiology (3x) and blood labs (3x) in the past few months for my comfort level. It feels like playing Russian roulette while seeking healthcare. Good luck with your investigations. Please keep me updated.
@ms4050
@ms4050 3 года назад
Many of your symptoms in the previous video is like my life story. I am looking to find a doctor who is Lyme literate as many doctors feel intimidated by it and don’t agree that all these weird symptoms could be from a previously treated Lyme infection. I also had mold in my apartment and looking to move. Yesterday I got diagnosed with optic neuritis. Vertigo, balance issues and joint pain might have started for me due to mold. I don’t know how you tested mold in ur urine and blood? What tests did you do? Two doctors I saw for mold do not care about mold exposure. With constant nerve issues and constant choking (even on my own saliva) and balance issues, fatigue and memory issues....it might be MS....but it can still be Lyme. I have yet to find a doctor who would think it is not in my head only and I only need a vacation. Anyway, I wish you best of luck in your health journey. One thing I recently came across is genetic mutations which cause blood clots and aneurisms. I’m getting a genetic testing done through 23 & me to see if this is anything related to MTHFR or other mutations where detox is impaired and you get really toxic etc etc. Have you tried genetic testing?
@aprilshealthmore8048
@aprilshealthmore8048 3 года назад
I take reglan, zofran, and sucafrate for my gastro paresis it’s from my Illness
@areliz_ramos
@areliz_ramos 4 года назад
hi, have you done a gut examination? i do GI map test and discovered that i have multuple gut infections that are causing me mcmas reactions and histamine intolerances after a long years of antibiotics
@DavidMichaelCommer
@DavidMichaelCommer 4 года назад
Hi...no, I have not. I had all these allergic problems for many years before I began any kind of antibiotic treatment, and the symptoms actually improved during that time, and so I have not looked into gut issues as of now. My doctor did suggest that the antihistamines I have been taking may have upset my balance, so I may end up looking into that once some of these new priority areas of concern are settled. My mother died a couple of years ago from something like Crohn's disease or ulcerative colitis, and my sister, who is a couple of years older than I am, was just diagnosed with ulcerative colitis after experiencing the same symptoms my mother did for years. As of now, I have not had symptoms similar to theirs, but it is on my radar.
@TruthSeeker410
@TruthSeeker410 2 года назад
@@DavidMichaelCommer definitely get the GI map test! You and your family are suffering from gut infections. Have your sister take one too and a Lyme & mold test.
@bobbichamberland1607
@bobbichamberland1607 3 года назад
Hi. How are you now? I hope your feeling better. If you need a friend I'm here 🤗
@aprilshealthmore8048
@aprilshealthmore8048 3 года назад
You need a. Neuro-ophthalmic doctor
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