Living with LPSVS (long post-COVID vaccination syndrome)

My story has changed since I last responded to this post. Was finally diagnosed with mold illness. Turns out my first and last booster suppressed my immune system and allowed mycotoxins from mold exposure to do their dirty deeds. Symptoms cross over (thus confusing diagnosis) with LC with same brain fog, PEM, fatigue, etc. I am about 2 months into a 6 month regimen and finally recovering.

@arichards3 Wow!!! I am so happy for you that a cause was discovered!!!! How was the mold illness discovered?

@sandtoes After no success with local Doctors and Mayo Rochester, I took matters more in my own hands and turned to Doctors Google and YouTube. I found Doctor Patterson and his team and engaged them in an LC Treatment. Dr. Patterson has been mentioned by many on this site. He applied his regimen (starting with special blood testing). From test 1 to test 2 I showed improvement. From test 2 to test 3 I stalled and Dr. Patterson found that surprising but suggested we test for Lyme and Mold. Negative on Lyme, positive on Mold. That had me search on my own for Doctors testing/treating Mold. Fortunate to find a couple of practitioners in Charleston, SC. Like everything is seems, many points of view on all things Mold. I happen to have taken to Dr. Andrew Campbell who has many YouTube videos to educate on his point of view. I am following a hybrid regimen between Dr. Weirs at COEM Charleston and Dr. Campbell. Hope that helps and best wishes on your journey.

@mlillich I think you probably want to get up and move around, even stretch and exercise as much as possible. I was inactive for too long (weak tendons discouraged movement), and my muscles started wasting. I looked awful and had lost 30+ lbs to weigh 133.
It has taken most of a year with walking, stretch bands, and kiddy weights just to start looking less like a cadaver-in-waiting and more like a very skinny human being. I'm old, so it's very slow improvement, but there is improvement ongoing with my slowly increasing workouts. I'm 141 lbs today.

3 years of not feeling well since covid infection. Then had horrible reaction immediately after last booster,
Now homebound with POTS, fatigue, brain fog, dizziness and chest pain. Went to ER with possible heart attach but hours of tests all came back as normal, all while continuing symptoms of erratic breathing, B/P, heart rate and temperature. Autonomic Nervous System disruption! Of course. At ER after morphine etc, finally got Ativan which stopped all symptoms. Ativan touches the part of brain that controls autonomic functions.
Heart didn’t cause tachycardia, brain disrupted all vitals.
Any small exertion causes symptoms and must lie down. 4 months now. Getting weaker by the day. Unsustainable.
Vaccines are essential medical miracle. There are some of us more at risk of POTS… female, older, tall thin, autoimmune issues, and exercise aversion. Muscles need to pump the blood vessels. Healthy active people have very minimal risk.
Trying electrolytes, 10 grams salt and massive water to build blood volume, and mild leg exercise while lying down.
Any other suggestions?

@sarahm73 I had the same thing happen. 89 days after the initial second dose, I went down. I was handicapped when I woke up. I went to bed fine. I was a healthy, fully functioning staff accountant, until they let me go because it was during Covid and I couldn’t get into doctors to get diagnoses. Everything. Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, chronic stress syndrome, the list goes on. OVERNIGHT. But the doctors say no. Now I’m disabled, can’t live on what I get monthly, and all because I got the vaccine. I’ll never forgive myself or the government for injecting us with that poison.

Mold Illness regimen at about 2.5 months and feeling better every day.

@mlillich yes, post vaccination syndrome with PEM (post exertional malaise) you might get dizzy/vertigo head fullness sensation with tinnitus? All over weakness? Shortness of breath possibly tachycardia in and off? If you look up MECFS it’s exactly like Long Covid too. I have been 5 years sick from the vaccine. Also cognitive problems with memory, concentration issues. I also get internal tremors during waking up and falling asleep or going into a crash. I just started taking Nattokinase Bromelain and ordered another vitamin which of course I can’t remember the name 😭. There is a huge campaign of cover up and/or doctors who just don’t know but for some reason can’t just say “I don’t know”. Also….if your getting rashes or pain have your doctor test your ANA. I recently got dx with Lupus SLE and Sjogren’s. The vaccine triggered an autoimmune disease in me. So the vaccine caused my immune system to go nuts. Could also be spike protein wreaking havoc as well. Good luck and don’t give up. I was bed ridden for several years and I slowly slowly improved in terms of energy. Pacing is the key. Acceptance is another challenge but you don’t have a choice. Just go with it, keep positive and know it will get better albeit very slow and over a long time 👌. Good luck! Oh and find a doctor who has an interest and knowledge. Important for your mental health with all this and those are hard to find!!

@tls5alex
OH MY GOODNESS!!! What you have been through.
I think my family did't believe me. I was bedridden for 6-7 weeks and had no idea what was happening after getting an innocent vaccine. I was actually in Tokyo Jan. 2020 when Covid broke out. I luckily had a nebulizer that I have not used in 10 years so I could give myself breathing treatments etc. I am an RN, but ignorant about all of the above that you messaged.
The only thing that I could eat for 2 months really was toasted sour dough bread. My stomach issues have persisted as well as brain fog and fatigue.
I live near Denver and did get a referral for National Jewish. They tested everything they could think of and I'm still not done with testing. I had some elevated cardiac labs and having an Echo next week. I hope all is negative but I am getting excellent care at NJ.
Thank you so much for reaching out to me.
TY
Monica

I am 5 weeks out long covid. I tested positive march of 2021. 5 year's of complete disabilities interspersed with Short periods of total charity. I would go from not being able to write my name or my social security number to being able to function normally. My wife and my family do not accept that it's long covid and are ready to have me institutionalized. When I try to explain my behavior their attention span goes to zero. It's already cost me my marriage and support from my family. Is there some agency that is established to help explain in laymen's language whats happening?