Dryness in Long Covid & ME/CFS: The Role of M3 Autoantibodies

[@anson.meadows]

Watching now. Thank you 🙏 [veteran who commented on your other video] I am waiting for lip biopsy. If it is positive, which I have swollen glands in my mouth, I will probably have to attempt more immune therapies. CAR-T is one that is showing promise…

[@me-cfs-strategiesforhealing]

Best of luck with the biopsy and your treatments. I really hope you can find much improvement. I just did a search for 'carnivore diet sjogrens' - a few success stories there. Perhaps healing up the gut could help with sjogrens, like other autoimmune conditions.

[@anson.meadows]

@@me-cfs-strategiesforhealing Thank you 🙏 I might need a G-tube very soon, due to neck muscles and swallowing…again, a weird mix of several autoimmune conditions it seems. *I must add, I developed some small MCAS or autoimmune like issues in the military, a few years before Covid. But in 2020, after the infection, I went downhill fast. As if it synergized; I think I got autoimmunity issues from military but Covid exploded things. Here is one of just a few videos I tried to make while sick, showing my crazy and horrible decline. Now, I can’t make such videos. Far too sick. kzbin.info/www/bejne/gYG1m2hmfKyHpa8si=-wXsdm3vSiHEEZR1

[@me-cfs-strategiesforhealing]

Thank you for sharing the video. It really broke my heart to watch it. I hope that you can experience a similar journey in reverse. Please look up 'Lauren dinkel' and find her website 'wheelchair to rollerblades' and read her story. She was once very severely ill from these kinds of illnesses but she recovered. Lauren is a friend of mine and I can vouch for the integrity of every word on her website. There are many things going on in these illnesses but neuroplasticity, I personally think, is an important foundation for healing. I haven't talked about it much on this channel - rather I've talked against an overly simplistic narrative about neuroplasticity and ME/CFS - but that doesn't mean it isn't important, albeit from within a multi-lateral framework for recovery, Lauren often responds to people as well, so if her story resonates with you, please write to her.

[@jelenegilmore4821]

Oh my goodness!! I’ve had this for the last 6 months..for me the dryness mostly affects my eyes and sinuses. The tests for sjorgens were negative and I refused the lip biopsy as I heard it’s quite uncomfortable. I have a feeling I’m dealing with what you described here.

[@me-cfs-strategiesforhealing]

That's most interesting, Jelene. My Sjogrens test was also negative but I do have the high M3 AABS.

[@jelenegilmore4821]

How did you get tested for the M3….?

[@me-cfs-strategiesforhealing]

With cell trend - in Germany but you can fedex to them from anywhere. I’ll have a video next week with my results

[@robinhood4640]

@@me-cfs-strategiesforhealing I was diagnosed many years ago with a non specific autoimmune disease. At the time i was suspected of having scleroderma or sjogren. Scleroderma was negative and i was tested to see if i have sjogren primary, as in my autoimmune disease, or secondary to another autoimmune disease. The test came back that i had it secondary to an autoimmune disease although the autoimmune disease was, and still is, unknown, hence my diagnosis, sjogren's syndrome secondary to a non specific autoimmune disease. I can't remember what the tests were, but i definitely had the symptoms of sjogren at the time. On a side note, have you looked into the difference between autoimmune diseases and auto inflammatory? I haven't watched every single one of your videos, so you may have covered this.

[@me-cfs-strategiesforhealing]

Thank you for sharing that. No, I haven't looked into the difference between autoimmune diseases and auto-inflammatory situations so feel free to share any pointers on that. I might do a video on it someday.

[@angelbryan98]

I don't know where else to talk to bro, I am very scared and anxious. I don't get to the point of Post Extensional Malaise yet or full bed bound but I feel fatigued with imbalance, brain fog and blurred vision. Will this keep progressing for me? I got POTS on January for like a week but subsided and now I am having the symptoms I mentioned.

[@me-cfs-strategiesforhealing]

Dan Neuffer's CFS Unravelled Channel, book of the same name and his program are all very decent ways to think about a framework for improving. Perhaps check them out and see if they resonate for you. ME/CFS is not really a progressive disease - ie there is no definite 'get worse and worse' thing going on - but if someone keeps overdoing it without listening to their body, then they can get worse. Or if some other stressors occur to them. Raelan Agle's channel also has loads of helpful recovery stories.

[@barbararobson2098]

I had these symptoms for several years, what I hated most was how it affected swallowing food as the dry mouth seemed to extend down my throat, causing choking. I started a few months ago on methotrexate for the joint problems I have on top of the CFS and my dry mouth/eyes has massively improved, my dentist noticed a big difference too. Btw, I don’t have the Sjogren’s antibodies.

[@me-cfs-strategiesforhealing]

Thank you for sharing Barbara. I also used to have the difficulties swallowing due to dryness - it’s scary. Interesting methotrexate has helped your dryness, I wonder why?

[@jelenegilmore4821]

I’m hoping carnivore may help with this as it’s been so good for autoimmune

[@me-cfs-strategiesforhealing]

I hope it might have a role too - perhaps sealing the gut, allowing for a less reactive immune system response.

[@jelenegilmore4821]

Yes! My hope is the lions diet I am doing will seal the gut enough to start introducing ferments to heal it all further 🤞