I'm desperate. Where can you recommend help for LC patient?

Posted by carolaharoni1950 @carolaharoni1950, Jun 6 12:01pm

Can anyone recommend a clinic or doctor to help with LC? Mayo is out and the U of M only accepts referrals from in house which leave me out. I would prefer Hennepin County but will go wherever. Thank you

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essiee | @essiee | Nov 1 8:33pm

In reply to @pianist3 "I know that for me, here are some things that I’ve tried for LC have really..." + (show)

@pianist3

I know that for me, here are some things that I’ve tried for LC have really helped me feel a lot better! I added a lot of foods that are super healthy to my daily meals, and I choose all organic, some of my favs: blueberries, cucumbers, arugula, nuts, chicken, turkey, eggs, Ezekiel sprouted bread…I also bought a couple of really good air purifiers for our main family room and bedroom, I walk at least 1 mile a day, weight training 3x a week and meditate/pray 3x a day. Deep breathing helps…Breathe in 5, hold for 5 and breathe out for 5. Also, naturopathic healing items work too: like lemon water, AppleCider vinegar in water and castor oil help to detoxify the liver. Manuka honey and sea salt help everything too! Probiotic sprays behind the ears really help with vertigo. Also take a probiotic capsule daily, and Vit D with K2 daily. Read the book, The Mindful Body by Ellen Langer…life changing!!! Anyway, I hope something I’ve listed will help you…I truly believe that old saying, “Let Food be thy medicine.” You’ve got this!! I’m 58 and on no medicine!! (Although I need to lose some weight after menopause, ugh.). It’s also super important to keep your immune system strong (Vit C, Zinc) and your lymphatic system moving…gentle self- massage each morning will truly be excellent too keep things moving! Also, try to stop or cut way down on: alcohol, soda, highly processed foods, sugar, red meat, high fat items. All organic truly is life changing!! (Expensive though.). But ultimately the mind is waaay more powerful than any pill you can take (unless it’s super needed.). Pretend you have Dorothy’s Ruby slippers on all the time…you’ve always had the power my dear!” My last tip for health and longevity: help others!! Volunteer, help a neighbor, go to church, join a craft/ sewing group, the evidence is clear that when you help others, you heal yourself! Play lots of games, by yourself and with others…learn new ones, TCG’s are fun too…Remember we are all kids at heart, laugh daily, watch comedy, sing, dance, explore, plan a trip, learn a new hobby, spend time with people of all ages, Also, get rid of toxic people in your life, I mean…wish them well, but move on from them, listen to your gut, it’s almost always right! Be your own best friend!! Retire if you can to lower stress and get at least eight hours of really good sleep, take a nap daily! Check out the Blue Zones everything, eat more plant based, eat the rainbow!! 🌈 ok, have a blessed day!!! Remember, you have the power!!!

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@pianist3 I'm late seeing this comment, and just want to say how fortunate you are that you are finding so many things to be helpful...and doable. I think many of us would love to be able to do these things, but are unable. I can barely walk to the bedroom upstairs without experiencing PEM, and as for retiring ~ I am old (80) so already retired, but would have been unable to retire before 70; I think many people with LC would like to retire, but cannot, and find it impossible to qualify for disability benefits. I so wish I could continue with my volunteer work, plan a trip, help others, etc. but it is simply not possible. In fact were it not for a very compassionate and able husband I'd be unable to even eat those good meals you mention. I think I just felt a need to point out how lucky you are, and that most of the other people in this group are struggling. I wish it were just 'mind over matter' and I absolutely agree that that helps, but it's not the whole story. I (and many others) had long been eating organic, exercising, doing yoga; I cannot even do gentle yoga now. So many things.... I think every one of us is doing the best we can; you seem to have hit the jackpot in terms of successfully managing this condition, and are very lucky. Keep on keeping on! Go well, dear pianist....

suefish | @suefish | Nov 2 9:30pm

Me too. @suefish

tkinder | @tkinder | Nov 3 2:11pm

The Bateman Horne Center in Utah is cutting edge for Long Covid and have years of history treating similar chronic diseases like ME/CFS. They are doing research on Long Covid as well in conjunction with the University of Utah. Search for their YouTube posts for good free info.
Here is their website:
https://batemanhornecenter.org/

h2998sc | @h2998sc | Nov 3 2:12pm

Dr Paul Anderson,youtube.Feel better today...in any small way you can.God Bless...

lkirnbauer | @lkirnbauer | Nov 4 9:30am

I went to our Long Covid Clinic a few months ago and it was a complete waste of time! I was told by the Chief of Neuro and Infectious Disease there that I will not ever get my taste or smell back. How he has the knowledge to tell me that, I don’t know! I have Long Covid and lost my taste and smell on day 2 of the virus in December of 2022 and still don’t have it back. I had 7 Stellate Ganglion Block injections which took my PTSD/Anxiety way down, but if I overdo it, I will still get them. I can detect salty, sweet, bitter and spicy on my tongue, but no flavors. I’m currently having Green Violet Light Therapy at my Chiropractor’s office and have been experiencing more smells since starting that. Not constant, but more often. We all have to take charge of our own health and do as we see fit because most doctors still don’t have the answers.