Will feel great. . . short lived. . . poof it's gone!

Hi @summerof42. I definitely feel physically, mentally, emotionally. . . as you describe and I think so many on this site are here because of the same indescribable beyond frustrating unknowns or those who are sought for help have no personal experience with long haul/post covid. . . creating the most unbearable, if not infuriating, insulting, hopeless. . . , responses. We are here for each other and hopefully can find helpful info for our specific bodys needs to know we will get thru this and empower us to never give up! Know sounds so simple but we know just trying to find the answers exhausting and symptom creating. I’m sure those with this weight loss will share things that worked for them to gain weight as this does not fit the “norm”
as we know🙃. Biggest hug and only positive healing thoughts to you!🌈

Dear— please contact Mount Sinai in New York? Google it and click on the post Covid clinic. Call them. Please.

@car0- Thank you kindly. I did and they said they don't do telcon and I would need to fly out there to be treated. Being alone and feeling so ill there is no way I could manage this on my own. 🙁 🙁 🙁 🙁

All I can do is pray for a miracle and have faith in our Dear Lord Jesus.

Hugs

Oh no!! I’m so sorry. This is when we need each other. I wish I could go with you! There is no one in your church or club or…family? I’m worried about you!

Hi car0,
You're so kind, thank you. I wish you could go with me too! Unfortunately, I pretty used up all my friends and folks at my church for support during the last 3 yrs who have been so wondeful for support in going to so man appts, tests, and also to Mayo in Rochester (that was a complete waste of time and $$$$$$$$$$)

I'm worried about me too. I love life so much and it's excruciating watching it go by and wasting away. I try to remain positive, but at this point it's so hard and I losing strength and faith.

Hugs

Hi @summerof42. You may have shared your efforts for help so please excuse if I am repeating something. Most counties offer public transportation and volunteers, unable to help in my particular area, but hopeful your area may offer county specific help? If not, and sounds like exhausted resources, may I ask if I can post comment on your behalf asking for anyone in this group who may know trustworthy/reliable person to help you general area you live? Understand you may not want your specific info on this public site, but sure we can find way thru your county social worker etc to privately arrange? 🤞

Hi law59,
Thank you kindly for reaching out. Transportation is not really the issue here and we do have support through Aging Disability Resources Center, problem is I have no medical support to go to. My PCP said he doesn't treat LT Covid, the Endo I saw said I now have lymph nodes in my neck which hurt and gave me a Rx for a trial phase of Naltrexone which only made me feel worse and didn't help at all, and ditto for Gufanacine given to me by Internal MD at Mayo (who was terrible and could care less) and Rx made me feel worse and he refuses to call me back after months of repeated requests. I called the large LT Covid Froedtert Medical College in Milwaukee, WI and they finally called me back only to be told they could arrange for an appt with a heart specialist, etc, problem being I don't know who I need to see and she said that's pretty much the gist of the LT Covid Clinic.

I call Mount Sanai in NY and they were so very nice and extremely accommodating in the way of helping people with LT Covid and meeting with the support team, BUT it's in NY and I'm in WI and I have no way of getting there since I can't fly alone and they don't do telecon appointments. I prayed they did since I've had all the testing imaginable done in the last 3 yrs and just need to speak to them about my symptoms and get on proper protocol and medication
.
I'm saw a psychiatrist because as we all know Covid affects our central nervous system and takes anxiety/depression to the max and off the charts and she's tried several SSRI's which didn't help. Only surviving on Xanax now. Due to not being treated properly for the last 3 yrs, my mind and body are now in a PTSD state.

Per my posts, I now also have a very painful groin hernia and surgery can't be performed right now due to my state of health and extreme weight loss and only 89 lbs.

Last night I was in so much pain from LT Covid issues and hernia, I almost went to the ER, but they'll only send me home and tell me to follow up with my PCP or surgeon; I've gone down this path before with ER's. It's due to my PCP and several other specialists who wrote down my issues are anxiety/depression, even though some tests show otherwise and they don't even care to explore further and write you off - especially being older.

I don't sleep and napping makes it worse because the minute I close my eyes, my body jolts into a PTSD symptoms at this point with immediate internal trembling, shaking, feeling like I'm almost having a seizure and brain zaps, heart races.

I'm very weak, not an once of fat on me, even though I'm eating, but I'm going to try and take a shower or hot bath, but of course I fear there's the risk of fainting.

I don't know what I would do with the support of all the kind and loving people on this forum. I know I desperately need TLC and being with someone in not feeling so frightened and all alone as I wither away.

Being so strong these last few years, loving life, people and my many blessings, it's kept me hanging on, hoping for a miracle. Right now, it's so sad for me just to look out the window and the beautiful blue skies and gorgeous weather and not be able to be out there hiking, biking, walking and doing all the activities outside that I enjoyed so much that Covid robbed me of.

Sending lots of Love and thanks beyond words to everyone.

I hear my neighbor cutting my lawn for me, which makes me so sad because it is one of many things I always loved to do and working in my yard. I'm lucky I can walk to get the mail.

I'm really scared now because I realized yesterday when I opened up my gas and electric bill it was twice the amount, only to realize I didn't pay last month's bill! And on Tues, I left a message with an Integrative MD and he did call me back and said I didn't leave him MY cell number but his phone number! So obviously, the brain fog symptom is now setting in. A few weeks ago I made a quick trip to the grocery store even though I really didn't feel up to driving, but needed food. At the register I discovered I lost my keys and went into a complete panic. I discovered I left them in the car with the car running! Luckily, the door was not locked.

Let's all hold hands and pray together. Power in prayers. "Dearest Lord, I am so very thankful for my many blessings you have bestowed upon me all these years. I ask for your forgiveness and help during this difficult time and need your love, strength and support. Please hear my prayer and give me faith and heal me."

I had my third covid infection in mid-December of 2022, absolutely the worst of the lot despite being fully vax'd. I was in bed for two weeks and then, like some kind of Miracle, I felt perfectly well! I was painfree for the first time in over a year and the depression was gone. My Primary said she'd "never heard of any such thing!" but other medical people said it wasn't uncommon, that sometimes it lasted & sometimes the symptoms returned.
The return of any symptoms was very gradual but this time they were different. I hit rock bottom with the depression (my Primary had referred me to a post-covid recovery clinic that was worse than useless and there wasn't a single psychiatrist with any openings so I had to rely on xanax & buspar), and then I had several severe Afib attacks. I was wearing a Holter monitor at the time and my new cardiologist was immediately notified; switched me from a beta-blocker to a calcium channel blocker & added a blood thinner. I don't know what one thing has to do with another, but I immediately felt much better.
What remains is a pitched battle with mcas (terrible leg muscle/joint pain and the itchy rash all over my torso) that my cardiologist believes was triggered by the latest Pfizer booster shot. However, I am no longer depressed; the brain fog is minimal; and the H1, H2 protocol is starting to bring relief from the itching and muscle pain.

Betty - I sent you a private message.