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

Posted by summerof42 @summerof42, Jul 20, 2023

I see another member posted the same experience, ditto for me on several occasions and then poof. . . it's gone! I just don't get it.

I have Covid twice, or maybe even 3 times. At this point, I'm extremely ill and barely surviving and down to 89 lbs. All one and scared. Brain isn't functioning at 100% anymore. . . sorry if I have any typo's here. I left a voicemail for a new Dr. yesterday and they said I didn't live my cell number for call back, but theirs!

Over 3 yrs ago, when my Doc told me it's anxiety/depression (of course - always go-to answer) I took Escitalopram and about 2 weeks later I remember waking up and felt fabulous started to gain a few lbs and even went back into the office. Got on my knees and thank or Dear Lord. Unfortunately, that was short-lived and I went back to feeling very ill again with new and worse symptoms each and every month.

I just don't get it. Why would we feel better for days or even weeks, then we take numerous steps back only to feel much worse and get more symptoms?

Has anyone else experienced this? I'm sure stress played a big part, because Doctors don't believe what we're experiencing.

I'm now at the stage with no medical help whatsoever, Docs don't know what to do, since many tests turn out fine, including Mayo, I feel so very dizzy, lightheaded and weak, like I could faint, I have periods where I experience derealization, like my brain isn't functioning and I'll go into a sweat and panic PTSD like feeling, especially if I just try to lay down and rest. I have the terrible internal vibrations and shakiness, I found out I need surgery for a hernia which they can't do due to my extreme weight loss and current health and risk involved. Hernia is in the groin area and burns and hurts so bad.

If I go to the emergency room, they just send me home. Notes will show all tests (except for hernia) are fine, all Docs say it's anxiety, or the don't know why to treat LT Covid . Even when I asked my PCP at Northwestern University in Illinois to PLEASE help and admit me to the hospital about 2 yrs ago, they kept me there only 1 day, did an MRI and kicked me out.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

law59 | @law59 | Jul 22, 2023

In reply to @summerof42 "Hi law59, Thank you kindly for reaching out. Transportation is not really the issue here and..." + (show)

@summerof42

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.

Jump to this post

@summerof42. I am soooo sorry you have gone through so many attempts with those results. Myself and Im sure most others here have similar stories and just want to further suggest due to my experiences running medical practices and dealing with beyond frustrating arduous processes for two adult disabled children. Since Mayo Clinic did sound hopeful, most healthcare systems have patient advocates who work with social workers to help make special arrangements that your situation needs. I have found being very respectful but forthright from the first call to patient services informing them in very few words your severe health and challenges with no family/transportation/caregiver/travel companion to get there, that allows them to reach out to sources outside the normal box and at first sign of push back kindly ask what dept helps the disabled there. It will probably take several follow up calls due to the number of us now challenging abilities of healthcare systems so dont give up and pace yourself as know just typing here can really use up days energy/bring on symptoms next couple of days🙃 There are also private social workers that can be hired however I know most of us going through this have lost or limited income to afford that☹️ We will find a way to help you!🌈

tchrart | @tchrart | Jul 23, 2023

I feel so bad for you, but hope in time this will be behind you. Just a thought, you might want to change the dr. you see for therapy.
I guess anything is possible, but by now I would think you should be feeling better than you are. At one time I needed therapy and was on meds dr. ordered. I took a while for them to kick-in. I did feel much better after an 18 month Rx therapy.
Good luck to you, get better quickly. You have the "community" with you.

summerof42 | @summerof42 | Jul 23, 2023

In reply to @tchrart "I feel so bad for you, but hope in time this will be behind you. Just..." + (show)

@tchart - Thank you kindly. Throughout the past 3 yrs I have switched Doctors for therapy with no luck in outcomes. They just quickly go through different meds and there's no support, they rush thru the appt as I try to talk and I'm merely a number. . . next! I remember the first Doctor I saw to discuss meds for anxiety/depression took 8 months to get in! When I tried other Doctors and locations I was told the same and the wait list is long.

I know that's the reason I'm doing so poorly and in such a state of terrible health with unbearable symptoms and just want to "jump out of my skin," for lack of a better description. Every morning I wake to feeling much worse - like now, it's taking all my strength and will power just to type this note. What's so scary right now is the groin hernia I developed which I believe happened because of the extreme weight loss being now down to 89 lbs and now fat to hold in my intestines.

Hugs & Love to all.

car0 | @car0 | Jul 24, 2023

In reply to @law59 "@summerof42. I am soooo sorry you have gone through so many attempts with those results. Myself..." + (show)

Excellent point. You know, I’ll only speak for myself… but I could get sooooo much from hearing from mom’s of adult children with disabilities! You are in a different and superior plane than I am. Thank you for your suggestions. I’ve been very concerned abt Summer of 42. I wish I lived closer and was in any shape to help…( I also wish for world peace and believe in the tooth fairy… )( that was me being facetious)

summerof42 | @summerof42 | Jul 24, 2023

I wish I had a time machine, go to China and make sure Covid does not escape the lab, or better yet, prevent it from getting created all together! It's insane we anyone felt the need to create such a horrible virus.

Hugs and Love to all. Let's pray they come up with a cure and treatment soon. Power in prayers.

law59 | @law59 | Jul 24, 2023

In reply to @car0 "Excellent point. You know, I’ll only speak for myself… but I could get sooooo much from..." + (show)

Hi @car0. Thank you so much for bringing a grin to my face and I wish the same for our world. Hope others on the site have seen our posts and summerof42 will allow us to help in any way we can as we’re all here for each other🌈

summerof42 | @summerof42 | Jul 24, 2023

For anyone reading this post, let's all hold hands (virtually) and take a moment to ask our Dear Lord Jesus to hear our prayers and provide the knowledge and power to the Doctors, Scientists, Biologists and all those working on this virus to help us and give us the cure we need to take away our pain and heal us.

POWER IN PRAYERS.

jwkelly72 | @jwkelly72 | Jul 26, 2023

How can they see you as do emaciated at under a hundred pounds and say you're fine and send you home ? Something doesn't add up. Feeding tube, feeding tube, feeding tube before it's too late.

car0 | @car0 | Jul 28, 2023

Summer of — just checking in on you. Please hang in there….

summerof42 | @summerof42 | Jul 28, 2023

Thank you so much for your kindness. I'm hanging in there as best as I can. I even called the ER and they said, per my last two visits there wasn't really anything different they would do and more than likely release me AGAIN since my tests turned out normal and primary indicates "anxiety" this is causing the problem. Idiot.
I told them I know have lymph nodes in the neck, extreme pain in right flank area an stomach, hernia and some lab abnormalities (as listed below) and they said I should reach out to the Dr. who ordered them to discuss. Trust me, at these hospitals in my town they don't care, especially if your over 65. Even the hospital I went to 2 yrs ago, which was the Northwestern University Hospital, they released me next day.

I really prefer a integrative/holistic MD that treats symptoms and cares, especially when it comes to LT Covid. Trust me, I would find the strength within me to travel and get the help I need, but where? Even when I saw the internal MD at Mayo it was a big waste of time and $$$$$. He gave me an Rx for Guafancine, said, "why not try it, it'd good stuff." When I reached out to him 15 times pleading for him to call me back because it lowers blood pressure and mine is already low at my weight, and he refuses to call me back - nurses say he's too busy.

Free Kappa 19.4 mg/L *3.3 - 19.4 mg/L)
Free Lambda 11.1 mg/L (5.7 - 26.3 mg
Kappa/Lambda Ratio 1.75 (0.26 - 1.65 H)
Iron 137 ug/dL (37 - 145 ug/dL) - this is good
Transferrin 386 mg/dL (189 - 340 mg/dL H(
Iron binding capacity, calculated 540 ug/dL {250 - 450 ug/dL H)
Mean Corpuscular Volume 102.2 fL (80.0 - 100.0 fL H)
Mean Platelet Volume 11.9 fL (7.0 - 11.0 fL H)
Vitamin B12 243 pg/mL (180 - 914 pg/mL) - definitely on low end of normal.

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