Multiple Autoimmune Diseases & Post Covid

Lisa-- every story is different. About pressure: technically I was not forced either. The pressure existed, however. In NYC, you couldn't enter a restaurant without a vax passport. More important, we are scholars and research archives in Europe. We knew you could not get on a plane, and even worse, you couldn't get back into the country without the VAX. Some European countries were very bad; people got arrested, threatened, etc. It was all mass insanity. I'm sure you felt or sensed some sort of pressure, even in your more rural surroundings. Agree that docs don't want to hear about vax damage! Even if they agreed, they have to abide by the PC "truth." How wonderful that you have a horse and the comfort of a beautiful animal. Sending love and prayers that you get back the parts of your life now missing. Jane

Hi Jane. We had the same restrictions. I live in Palo Alto which is only 30 miles south of San Francisco. I know mentioning a horse makes it sound more rural. We just happen to have a boarding facility 10 minutes from my home. I’m definitely not arguing the pressure. You know, I actually think that I had to be vaccinated to get to my father in NY. It’s been such a blur since I got sick. It’s also been a blur because I lost my father to covid. He was very healthy. Was just having trouble with time management and self care about 6 months in to sheltering in place. I found a highly recommended CNA who claimed to be vaccinated due to her profession, to help with shopping, cooking and household tasks. She was not vaccinated. I’m not saying that I felt everyone should be vaccinated. I just felt more comfortable having someone who was helping my Dad in his home because he wasn’t vaccinated. Even though he was older, he was hospitalized and beat it which is why I was able to get to him. I had 36 hours with him and he died in my arms. The whole thing is so confusing, painful and frustrating. I’ve read so many stories here that I can’t remember if you also had a vaccine injury. I’m still living like we are on lockdown - almost. My poor body can’t handle anything otherwise I would be getting back in sync with normal life. Do you or anyone in the group know of anyone studying vaccine injuries or long covid in the SF Bay Area? I’ve exhausted my options. Started at Stanford. Wishing you the best! I wish this wasn’t even a topic. But my jaw dropped when I found out how many people have suffered. I wish I could fix this for everyone. I’m not sure how to make this more known and to get help for everyone battling. Strength to all!

Yes with extreme fatigue- covid in February- started feeling like me again about 1 month ago!! Still have bad days-65- don’t know if I want new Covid shot!!

@jshdma I’m really sorry that you’re experiencing problems with your autoimmune disease. You say it’s getting worse by the day. Have you seen your doctor? Are they managing the changes effectively?
I, too, have an autoimmune disease but I’ve gotten all my vaccines. I can’t imagine having a bad case of covid on top of my disease!
What has your doctor said about you worsening symptoms>

@becsbuddy Thanks for your interest. I have definitely seen numerous docs, had dozens of tests. No results. My auto-immune problem was mild, but got much worse after 1 vax. I would never get another, and I don't recommend it to anyone under 60. I am a senior (still working) and I know numerous seniors in my work-place. Most did not get the vax and none got covid. I believe the narratives of many deaths have been distorted in that the deaths came from other existing causes.

Have you had blood work for gout? I also have like Lichen Plan.. and now diagnosed with gout.

I had Covid at the beginning I was almost on a respirator. It took me three months to recover. When the very first boosters were available I got them due to having ulcerative colitis. And all ways said if you have an autoimmune disease do not risk it. I started to decline shortly after that. I had to inhalers I had chronic diarrhea. I kept having to take medicine for it go on fob diet. Needless to say it was like a yo yo effect. Then my vitamin level went out of wack. I worked my job thru all of this. In January of 2022 I had omicron. My body took a decline I slept all the time. Lost my job for having to call in to much. The chronic diarrhea was still there. And at this point I was fed up. My GI doctor did a scope it came back normal. He could not figure out why I had the chronic diarrhea. In July it got worse I was falling all the time. Had to use a walker and in an out of the er my potassium levels were beyond low. They just pumped me full of it and sent me home. After the fourth time. I demanded to stay and would not budge on it. During this time I ended up not being able to walk. And all my vitamin levels went completely down to nothing. I was in the hospital for 2 1/2 weeks. I also lost 100 pounds within a year. They did everything all kinds of test first I thought I had MS then they thought it could be cancer. It took the third round of doctors to realize the chronic diarrhea was a big part of it. So I was put on a medication that did not stop it right away. But it helped in the long run. I also saw neurologist and they wanted to do an EMG but the person who did the test was on leave from there. I started to lose feeling in my legs and my arms, but the worst part is I had constant neuropathy in my hands and feet. Also, I couldn’t feel anything when I had to go to the bathroom. And since my vitamin levels went back up, I was released, then transferred to a rehab hospital. Where I had to learn how to walk again during this time, they put me on medication to help with neuropathy. But the constant sizzling and feelings of nails going through them. It was an intensive process with learning how to walk I was there for a month. When I got out the nueropothy was still horrible. I had to wait a month to see a neurologist. They did the EMG and heard a lot of O boys. I was told it was possibly sensory ganglionopathy. I was told there was no nerve activity in my lower arms, my lower legs feet and hands. The doctor told me once his report was done. He would have a definitive answer. And set me up for an appointment and told me he would be my doctor. When I went back for the test results, it was exactly what he thought it was. I started having equilibrium problems, and that was from the cause of having the sensory ganglionopathy.I don’t have the chronic diarrhea anymore. Thanks to the gastrologist I saw in the hospital I feel he saved my life. I am on permanent medication that completely stop the diarrhea. I am so grateful for that.Now I can’t walk on my own. I have to use a walker and a wheelchair, I am bedridden for the most part. I’m just trying to deal with all that sorry this is so long but I feel my story would help others. I will never get another booster shot for Covid. I am 46 years old at the peak of my career being an accountant went to college. My daughters are 20 and I feel horrible. One of them stays home with me, and the other helps out when they can. I just feel with their age and starting out in life they should be able to do what they want and live their life.
They don’t know much about my disease. It’s a very rare one. I also have problems with my heart and my bladder specialist for that coming up soon. The doctor my medical believes I have long Covid but there’s no way to test it, I have very supportive doctors. A lot of people don’t get that support. You guys have any questions I will be here to answer them. I know y’all struggle, and have an auto immune diseases It is never easy. I just wish I knew somebody with my disease and find a support group that can help me. With being disabled.

I'm so sorry that you are suffering this much! I developed sensory and motor peripheral neuropathy after the Covid vaccine. I suspected involvement of the dorsal root ganglia neurons because 3 neurologists agreed that my presentation was unusual. The nerve pain and numbness in my feet were dramatically increased by sitting. There are a lot of ACE2 receptors in the DRG neurons. There is evidence that my nerve damage was autoimmune-mediated. I am slowly recovering. You could find help and support at React19.org, which was founded to help those with injuries due to the Covid vaccine. When funds allow, they give grants to those struggling financially.

Thank you for sharing your story with me. It is hard to struggle through all of this. Thank you for the website. How do you cope?? And have you been able to accept it?? It’s been a year for me with this. And I am struggling with both.

Most neurological injuries from the vaccines seem to peak around 8 months and then slowly improve. I'm much better now at 29 months and continue to slowly improve. That makes it easier to cope. In the beginning, no one knew if we would recover. Hopefully, you will get better, too. Has anyone checked your vitamin B12 level? B12 is important for nerve healing. You likely lost considerable nutrients due to the severe diarrhea. If your level is low, you could receive B12 by injection to bypass the malabsorption. Your primary doctor or neurologist could place the order for the blood test without meeting with you first.