Post COVID for 21 months now and still declining

Hi ..do you know what the program is called for financial help..I just missed another week of work..I had to have my central air conditioner replaced at almost six thousand dollars so now I have that debt, also I work part time and do not have short or long term disability, do not qualify for FMLA , because I do not have enough hours. I just used all of my sick time as I was hospitalized , as the long covid has triggered ulcerative colitis..any suggestions or advice would be so appreciated..Thanks kitty2

Sorry to hear of your financial hardship. I can relate. I don't know the specific name of the program but it's the only one if it's kind. The program I mentioned is a Federal COVID relief program that each State administers. It's individually administered by the County in the Social Services and Assistance type of Department. It's only for people who were working when they contacted the virus, who can't work bc of the virus and - key criteria- they have a job to return to. That's all I know. But that should be enough for you to make a phone call to your county and connect with it. The program covers housing and utility costs for a time. It's easy to apply for once you connect with the case worker. Let us know how it goes for you.

Thank you so much ..I will try to call the county tomorrow. I am supposed to return to work on tuesday, and due to finances I have to. My job is very physical. If anyone has any more information on this program let me know. I live in minnesota and reside within Hennepin County. I appreciate all your messages. This is a great way to connect. I have felt so isolated and some people do not get it. Covid has changed so many of us long term. I hope some day there will be answers for all of us. This is a journey and we have to advocate for ourselves. Sincerely Kitty2

My sister-in-law is suffering from these as me symptoms. She had tried numerous diets, vitamins, supplements, etc. and had had not relief. She doesn't even leave her house now because of the anxiety this has caused. We have had not luck with help locally. Was wondering about any physicians who would do on-line visits. There is a doctor in Kentucky who is treating patients for this and said he would see her & do the treatment but again getting her out and that far from Georgia is the issue. Any sugg appreciated.

I am so sorry to hear of your struggles. I'm 12 1/2 months out from when my issues started. I can't imagine going 21 months and counting!

My symptoms mirror yours in so many ways. When I got covid, I had 11 days of fever, 2 full weeks unable to eat almost anything at all. I was weak, dizzy, and shaky. I don't have anyone else who can do my job at work (I, too, work at a college). So, I worked remotely even with my fever.

A month after covid, I woke up with vertigo. I felt like I was spinning on my bed. I couldn't walk without holding onto the wall. I got into the bathtub and couldn't look at the water due to the vertigo. I had nystagmus for probably 5-10 minutes.

My vertigo continued 24/7 ... NOT episodic, but 24/7 ... for 5 months! I have been working FT the entire time, but it is almost all I can do to make it through the workday. I feel ill almost every day of my life now.

I saw my PCP 7 wks post-covid. I could barely walk due to my weakness and vertigo. She referred me to P.T. a month later. Within 3 days of starting P.T., my physical therapist and I both knew I needed to see an ENT. That took another month to get in to see, so now I was 3 mos post-covid. He saw the nystagmus in my eyes when following his finger & of course he saw how I could barely walk ... incoordination, walking at a snail's pace, holding walls, etc. He said I needed balance testing and to see a neurologist. I couldn't get in for balance testing for another 6 weeks! And my neurologist referrals took forever. Not sure who dropped the ball but when I finally started calling the 3 neurologists who I'd been referred to, some claimed they were waiting on my call and some claimed they'd never rec'd a referral. This was January (5 mos post-covid) and my referrals happened in early Dec.

I had an MRI in Dec and the radiologist believed I'd had a stroke. I had two times in Nov and Dec when my feet would not even MOVE! I was at work and started to cry because I was so scared. A coworker wheeled me to my office using my office chair. It was humiliating and so scary.

The 1st neurologist I saw (in Feb., 6 mos post-covid!) immediately checked my ferritin and said it was low. 38. She said anything below 50 can cause all sorts of neurological problems. So I started taking iron every other day. She also said I had occipital neuralgia (what I was calling daily migraines). She gave me a nerve block injection which relieved some of the pressure.

I wanted a second opinion. Saw another neurologist in March. She did a more thorough neurological exam, watching me walk up and down the hall (which, to me, went uphill). She ordered a 2nd MRI and an echocardiogram as well as a 5-day e-patch (like a 5-day EKG). My heart is normal. After she saw my 2nd MRI, she said she believed I got Wernicke's encephalopathy from my 2 wks of not eating (causing a thiamin deficiency which set off Wernicke's). She said W.E. usually causes some permanent brain damage.

Mind you, when I was working, I had trouble looking at two computer monitors. It made me dizzy. I, too, used a cane and a walker because I was so weak and dizzy. I had to use a wheelchair at the airport and I didn't even know WHY I needed a wheelchair.

I also had a head & neck CT plus SO many blood tests. One time, they took 10 vials!

I've been taking all kinds of vitamins but my Vit. B6 actually got too high, which can also make a person dizzy and weak, so I cut out my multivitamin and my B complex. But I continue to take B12 every day because my B12 was low as was my D.

I can't enter a store and walk right. Even if I'm ok at the moment, when I walk into the store, I'm suddenly uncoordinated, confused, my tremors hit hard, I can barely walk, my head hurts. It's awful. I feel the same way after watching a movie at the movie theatre (which I can no longer do) or going into an arcade where there are flashing lights.

Therefore my neurologist had me do an EEG to see if I'm having partial seizures. She also had me do a 3rd MRI to ck again for strokes. My EEG was abnormal, showing Delta and Gamma waves when I was not sleep. The report said I may be having seizures and/or epilepsy.

The 3rd MRI did not show any evidence that I ever had a stroke but reconfirmed what my neuro thought: that there had previously been edema in my vessels in my brain from W.E. The report suggested a demyelinating disease like MS. It also showed (as the others had) that I have sinus issues such as moderate mucosal thickening and also some kind of sinus cysts.

My neuro wanted to check for MS and ordered a lumbar puncture which showed high total protein, albumin, and some hemoglobin in my cerebrospinal fluid. That could be indicative of MS, but no oligoclonal bands were present which is present in at least 85% of people w/MS. My neuro doesn't think I have MS but she ordered a nerve conduction study.

The nerve conduction study in my legs was just last wk (a YEAR post-covid!) And didn't show anything abnormal. My arms/hands will be tested this wk. P.S. I got covid a 2nd time at the end of July, 50 1/2 wks after my first bout. This second round didn't do my weakness, vertigo, and incoordination (gait ataxia) any favors. I got worse again.

Next up in the testing is an at-home EEG to try to confirm or rule out partial seizures.

Also, my IgM (immunoglobulin M) was low (40) so my neuro referred me to an immunologist. I had a telemed appt w/him last wk. He thinks my sinuses are causing most of my problems. He had me start montelukast (Singulair) and zyrtec daily in addition to increasing my occasional fluticasone nasal spray to every day. He had me do an allergen blood test. He wants to see me in a month to see how I'm doing. I think he believes I'm going to be miraculously better. Gosh, I would love him to be right but at this point, I'm beginning to lose hope that I will ever have my old life back. Not even sure I can keep working FT. It is just too much and my husband is already on disability from a work injury after 33 yrs on the job. Blah.

I have met my deductible this yr and am REALLY wondering if I need to get a referral to a long haul covid clinic before the year is up so someone can maybe finally help me ... without it costing me another $6500.

I started P.T. again. I'd done 3-4 mos of P.T. the 1st time.

I've read medical studies that say i.v. methylprednisone or i.v. thiamin has helped others like me. Why can't someone try that with me? I want to be able to walk again and lift weights again, but at this point, I would settle for being able to hold up my hairdryer long enough to dry my hair without causing me so much fatigue that I almost can't even make it in to work that day.

Yes my Father has same symptoms.
He has always been strong till Covid. Is there any hope for recovery? it’s very stressful to not know how to help and no cure.

Since we are in rural maine we don’t have access to all the info that a bigger hospital might have. Her Rheumatologist is puzzled and has taken her off all her RA meds and gave her 5 mg dose of prednisone to help with inflammation. Since then she hasn’t had an episode going on 4 weeks. This whole time she’s been on the prednisone. Had it been enough to boost her immune system to help her fight. We don’t know. I’m concerned what will happen when they decide to change things again. Have you had any providers help you?

I need to ask about the sinuses and how they could be causing you all this trouble?

@bunzman ... I don't know if my sinuses are causing all this or not. It sure sounded to me like my immunologist, who I have only met once for about 15 minutes via a telemed appt, seems to think my sinuses are the cause of most of my symptoms, though.

My brain MRIs all show "moderate mucosal thickening and regions of mucous retention cysts [that] involve the right sphenoid sinus." My MRIs also show "mild ethmoid sinus thickening".

We are suffering from these same symptoms. While they’ve lasted since Nov 2020, there was a break when they weren’t terrible all at once. Alternating were the Worst headaches (lasting a day or so) mixed with chronic headaches. Complete exhaustion with very light exercise like a short walk. Can’t lift groceries. Feel sicker in the sun because so hot and agitated. Nauseous for a year. Literally. And depression feelings. Good news is finally some of the symptoms are wearing off. Eating a ton of calories has helped. Maybe gives slightly more energy and contributes to better sleep. Take multi vitamins and protein supplements. Eat no junk. Only whole good food. All supplements from good sites like Wellevate and or Bulletproof. Probiotic may have actually helped the most. However, short term memory and mental health issues seem to linger. Reading, remembering basic facts and even remembering what the movie we just watched is hard. Scared about these memory issues. Before Covid, was healthy 17 yr old with straight As and a full vibrant life. Played tennis regularly. Now, limited activities and little energy to even help unload a dishwasher. It’s like someone else has invaded my body. And mind. Looking forward to to getting help from local Hopkins long term care clinic. Thank you all for sharing your experiences here. So helpful.