I sat in the garden for half an hour this morning and realised it was the first time I've been out of the house since a hospital appointment in October. People have no idea what life is like for us. #pwME#MECFS#LongCovid
@mikepanayi Have you come across or tried any mind body courses. This one is amazing at retraining the brain to stop sending false signals for pain, fatigue, hr, etc. Lots of long covid success stories. rebeccatolin.com/success Highly recommend. Sending best wishes.
Five years of being ill with #longCovid
I’ve lost my health.
I’ve lost my home.
I’ve lost my job.
I’ve lost my marriage.
Unable to care for my pet cat so I had to give her up.
I’ve got nothing left, but still fighting shout out to my family that never gave up on me ❤️
@Gmwetz Have you come across or tried any mind body courses. This one is amazing at retraining the brain to stop sending false signals for pain, fatigue, hr, etc. rebeccatolin.com/success Highly recommend. Sending best wishes.
It seems that POTS is resolved.
Todays check showed HR of 72 while standing. Also handgrip strength test - as per Charite protocol - is fine. First round and second round (one hour later) are according to my age and there is no decline. No sleep apnea either. Oxygen saturation during sleep is not under 95
However still very fatigued and feeling of being poisoned. It’s horrible.
Don’t get me wrong - I am happy that the other tests don’t show abnormalities. But still, I am very disabled and sick.
But there are some other things to investigate. Dominate TH1 response, weak TH2 response, abnormalities in OAT test, strange IgM borrelia values, endothelial and mitochondrial dysfunction. Also an altered immune response to common pathogens is suspicious.
It’s just an very awful disease
2,5 years and counting.
@diannahaze Would highly recommend looking into this course on teaching our brains how to stop firing pain and false signals. Live course starts March 18 I believe. I took it last spring and it helped greatly. rebeccatolin.com/success
I’m at a hospital to see an orthopedic doctor for incurable Long Covid joint pain. The receptionist was super rude. I asked her to let the doctor know to mask up with me according to a note on my chart. She said they won’t comply despite my condition being immune deficient. 😭
@pamelarbishop Would like to respectfully share this amazing course that has helped many with LC. Trains the nervous system to stop firing false signals all over the body. rebeccatolin.com/success
I know the "recovery" posts are popular, but I just wanted to say that if you have had #LongCovid for years now and aren't getting better (or like me, are getting worse w each passing year), you aren't alone. I see you.
Twice Daily Nasal Sprays and Gargles Best Prevention During Cold and Flu Season
More reliable and safer than vaccination(s). You won't get this practical advice from the @CDCgov@NIH or @IDSA Dr. McCullough on The Steve Gruber Show January 15, 2025. @stevegrubershow@RealAmVoice@twc_health@XlearInc
@P_McCulloughMD@CDCgov@NIH@IDSA@stevegrubershow Can you recommend a nasal spray? A brand or type? I currently nebulize around once a week with food grade peroxide and distilled water mix. It's a bit of a pain in the butt. It works great though.
@Clarejames131 Have you ever heard of this course? Lots of support and success stories for ME and other conditions. There’s an online course and a live course option, also YouTube videos. rebeccatolin.com/success
@Micha_von_B Check out this course if interested. Many success stories improving long covid/ME. She also has YouTube videos. Online course option and love course options. rebeccatolin.com/success
@ThePOTSPostman I’ve seen POTS/CFS recovery stories from people doing a Mind Body course. It has to do our brains getting stuck firing signals that it shouldn’t after Illness and retraining it. An amazing science, there’s courses and on YouTube :
rebeccatolin.com/courseresilience-healthcare.com
It still amazes me that one of my chronic illnesses is triggered simply by standing.
And we live In a world where 90% of daily tasks revolve around that exact trigger.
@NatalieCapeTown Have seen recovery stories from people doing a Mind Body course. It has to do our brains getting stuck firing signals that it shouldn’t after Illness and retraining it. An amazing science, there’s courses and on YouTube :
rebeccatolin.com/courseresilience-healthcare.com
I am on the severe end of #LongCovid for nearly 4 years. Due to pacing I have finally stabilized and found my baseline. I have tried almost everything I can get my hands onto. This is what is helping me stay at baseline: Nattokinase 10000fu, Ivabradine, Ivermectin, Ativan 1/2