Thanks To (Real Not Rare) Giving The Vaccinated Injury People A Voice!
Update 05/16/22:
I am having a bit of a flare again with burning, tingling, joint pain and weakness. So it was interesting that today of all days I received an update on my biopsy.
I received the results back from my biopsy confirming that I clearly have skin and sweat gland nerve fiber damage. So I officially received a small fiber neuropathy diagnosis, although I am not at all surprised based on the original "immune mediated neuropathy" diagnosis from NIH a year ago. It explains the burning, tingling, cramping feeling, along with my inability to regulate temperature and sweat normally.
They tested for any and all conditions that could cause SFN, but all of them came up negative. The doctor has concluded (to me verbally) that this likely points to a "one-and-done damage" event from the vaccine. Although he refuses to put the vaccine as the cause on paper - stating he can't prove it and it will only raise questions within his institution. Whatever...
There is no cure. It is a permanent condition, so I'm going to learn to live with it the best I can. And God is a God of the impossible, so I am not convinced my body won't heal. As long as it doesn't progress, I have declined medications due to the side effects.
Still don't have any answers in regards to the joint pain, weakness and fasciculations though. Rheumatology at UVA has actually refused to see me. This is not a rare occurrence due to the reason behind my injury and the fact that Rheumatology is supposedly overwhelmed with patients (booked over a year out). So they pick and choose.
I am doing so much better, so I may or may not pursue Rheumatology out of state. Time will help me decide.
Have to follow up with cardiology eventually too, but at the moment I am just sick of doctors and having fun enjoying life a little again...
I also have to decide if I will pursue Red Light Therapy, Hyperbaric Oxygen Therapy, Plasmapheresis or IVIG... These are some of the treatments that seem to help others. Insurance won't cover any of them and it is too expensive at the moment. Time will help me decide on this too.
Update: 05/06/22:
I have had a couple of really bad evenings again with tremors, joint pain, and weakness. However, they only lasted about a day or two and then I feel normal again. So I still believe the overall trend is up. I have been pushing myself to do a level of activity that wasn't possible before, so it only seems natural to have some days where I relapse. I have yet to figure out whether some of this will be permanent or not. I still can't exercise or do strenuous activity due to the neuropathy symptoms, but I am okay with that.
Update: 04/13/22:
This past month has been my best month yet since getting the vaccine.
I have felt almost 95% recovered, with only a few short spells of bad days. I can’t believe it took over a year to have some level of normalcy return.
Regular daily activities have not been wearing me out. I find myself doing household chores, driving, walking without the extreme muscle weakness and shakes that I used to get. I’m still experiencing some burning and tingling and popping at night when I push myself but it’s nothing like it was. And I’m sure the neuropathy is probably going to take the longest to heal out of everything. I helped my husband put together a patio set today which made me smile the whole time. Yeah I’m feeling it a little bit, but nothing like I used to feel after trying to do something physically intense. I am definitely carrying and lifting things more with longer endurance.
I am gaining weight again. Which kind of sucks because I’m not at a point of being able to exercise yet. I’m watching what I eat but I’m gaining all the weight back anyway. I guess that’s a good sign though. Especially since I couldn’t keep on weight for many months. Oh well.
I’m trying to take it slow, and keep a positive mindset as I start to take on responsibilities again.
I don’t feel like anything in particular has helped me get to this point other than time and prayer. If I had to think of one thing that may have helped - well - I started allowing myself to sleep a lot more. The symptoms are often most noticeable when I lay down at night and it keeps me up late and wakes me up often. So my family and I have found ways of letting me sleep in as long as I need. After the year I’ve had, I’m not gonna apologize for it either. It’s what works for me.
Extreme exhaustion from lack of sleep was really getting to me. The extra sleep (even if broken) has worked wonders in my recovery and rebound after pushing myself.
I’m still going this Friday for nerve studies and another SFN biopsy. I still have to figure out why I have all of these autoantibodies and inflammatory markers. But my body is telling me that I’m getting better. That there is a light on the other side.
I am blown away by how many people showed me love, support and encouragement throughout this past year. The ones that abandoned me because of the “subject” of my injury were not worthy of being in my life anyway. I really put myself out there sharing this personal struggle with you all, and I’m just so grateful that it was met with so much love and prayer. Please keep praying and believing that this recovery is permanent.
11/01/21 ORIGINAL BIO:
Julie is a previously healthy mother of two teenagers. After losing close friends to covid, she ran to get the covid vaccine as soon as it was available. She desired to do everything in her power to help stop the pandemic, and trusted the safety data. Over the next eight days she developed severe adverse reactions with over 20 debilitating symptoms. Prior to the vaccine she had a successful career in sales, and was able to actively care for her family. For the past seven months since taking the vaccine, she has been unable to work. Julie has had to rely on her husband and teenage children to help take care of the household.
In her search for answers, she participated in research and treatment at the NIH where she was diagnosed with an immune mediate reaction, involving all domains of motor, sensory and autonomic. After review of her records and tests, her neurologist agreed that this was immune mediate autonomic neuropathy.
Today she has seen some improvements, but still deals with muscle weakness, joint pain, tremors, fasciculations, paresthesias, heart and blood pressure spikes, muscle spasms, and more.
Julie wanted to help spread awareness of these reactions and has worked to advocate for those in her support groups. She currently manages Real, Not Rare with a team of fellow vaccine injured. She has contacted the CDC, FDA, VAERS, Moderna, and her local health department, but her pleas have fallen on deaf ears.
Julie believes that the vaccine program could be made safer, if the CDC and FDA would acknowledge these reactions, research them, and work to inform the medical community. Until then, doctors will remain uninformed, without needed research, and those injured by the vaccines will be left without quality healthcare.
11/01/21 JULIE'S REAL NOT RARE STORY:
Q: What was your life like before you got the vaccine?
I am a mom of two teenagers, wife, and I was a successful career woman. I worked a full-time job in sales. In my free time, I loved to be involved with the kids activities, hike with my husband, and enjoy the outdoors. I also loved to sing, play piano, write music and dabble in photography. I love animals, and would often volunteer at animal shelters when time permitted.
Q: What was your reaction, symptoms, & timeline?
A few hours after receiving my Moderna shot, I noticed a burning in my throat and nasal passages. However, it did not last long so I didn't think much of it. The next 48 hours I had a sore arm and some fatigue but nothing unusual. Starting on March 12th, and over the next eight days, I developed a huge list of symptoms that were new to me. This included: nausea, loss of appetite, stomach cramps, joint pain, muscle weakness, twitching and popping under the skin, muscle spasms, burning under the skin, internal vibrations, heart and blood pressure spikes, tremors (at times whole body tremors), numbness and tingling sensations, head pressure, tinnitus, petechia, nerve pain, and more. Many of these symptoms I am still dealing with seven months later.
Q: What was your life like after you got the vaccine?
The first three months were the worst. I could barely get out of bed without my blood pressure and heart rate going through the roof. The pain was unbearable at times. The weakness was like nothing I had ever known. I did not know what was happening to my body and I did not know if I would live or die. As the months went on, I slowly gained some of my strength back, and learned to push through many of my symptoms. Each day is a challenge. I often find it hard to walk for long periods which makes cleaning, cooking and simple chores difficult. I need to sit often, and find it challenging to make it through a store or mall without pain, and needing a day or two of rest afterwards. I miss being active with my kids. Now my 17 year old son has to drive his 13 year old sister around when I am not feeling up to it. I haven't worked in the last 7 months, and my husband has changed his schedule to work more, to make up for it. He works out of town so this has been extremely difficult. My family and I moved to a new state right before getting the vaccine. I miss my old friends in my old state, because they knew me before I was like this. I know they would have been there for me in a heartbeat, but living in a new area has given me little support. I miss being able to walk through the woods, or stroll through the mall without pain. I am able to do more in the last month or two, but it comes with the consequences of increased symptoms, so it is a balance. I will keep pushing and keep believing for better days ahead. I am praying and trusting that God will use this situation for good and that I will find complete healing.
Q: Share your experience with any medical care and any diagnoses you have received:
The first doctor I saw told me I had anxiety. He refused to do any tests and sent me home with no answers. I went to the ER a few days after that, and as soon as they heard it was related to the vaccine, they became dismissive and rude. They discharged me after my bloodwork was normal. They also wrote that I came in for "chest pain" which was a lie. I finally got into a study at the National Institute of Health back in May of 2021. I was diagnosed with an immune mediate reaction to the vaccine involving all domains of motor, sensory and autonomic. They couldn't tell me whether this was a long term issue or temporary. They promised to try and get us answers, but there has been no disclosure of data or findings to this day. They tried me on a high dose steroid taper, but I couldn't tolerate it. Others who were part of the same study told me later that the steroids did not help long term anyway. I had an abnormal tilt table test at the National Institute of Health, which suggests POTS, but my cardiac doctor is also being dismissive since she said the vaccine is proven safe and effective. I also had an abnormal sweat test and my cytokine panels have been high. My local neurologist also agrees that this is most likely Autonomic Neuropathy from the vaccine. My primary care physician has also tried to help, but says there is no information on what to do or what to look for. So he doesn't really know how to treat the underlying mechanism. If the CDC and FDA would acknowledge these reactions, then more studies could be done in the medical community to figure this out. I was lucky enough to get a letter of medical exemption from my doctor, but I've been told they are not being honored by most places. I have also known thousands like me who can't get a medical exemption (even if a second dose could kill them), because their doctors are fearful of losing their licenses for putting a vaccine reaction on paper.
Q: Was your reaction reported, and what was the response?
I reported my reaction to VAERS after all of the doctors I have seen refused. It took them three months to put it into their system and they left out many important details. I called them every few weeks for months with no success. No one ever reached out to help me correct my report, to update my submission or to get my medical records. The FDA says their are effective safety signals in place, but their system doesn't seem effective. It seems broken.
Q: Is there anything that has helped, and have your symptoms improved?
It seems that my immune system is poor now. I got a cold (tested negative for flu, strep, RSV, and covid on PCR tests multiple times). The cold sent me to urgent care twice and I ended up on two rounds of antibiotics and an inhaler. I am also losing a lot of my hair. I am constantly picking up clumps of it. I keep thinking I will go bald, but I still have a ton left. LOL. I think time and rest has helped some. I do have longer strings of better days in the last two months, and I feel a little stronger. But this thing is weird. I relapse out of the blue sometimes, and it catches me off guard. It is really taxing emotionally too when that happens. Just when I get a glimpse of hope, I am back in bed for days. I have tried steroids, and a ton of supplements, among other things. Nothing that I have taken I can pinpoint as being the answer.
Q: What do you wish others knew?
When covid started, I had several healthy friends pass away from the virus early on. I was concerned and wanted to do everything possible to help stop this pandemic. When the vaccine came out, I rushed to get mine, trusting in the safety data that was provided. I was never informed that I could have a reaction like I was about to have. Many call me an antivaxxer now, but I am not. I believe covid is serious and wished the vaccine could have worked for me. I am disappointed that I have been cast aside and abandoned with no help.
Thank God my family has been extremely supportive. But Someone close to me told me I should stay silent for the greater good. This hurt deeply, and I learned quickly many in my life felt the same way. They deemed my pain and suffering as a threat to the vaccine program. Instead of wanting it to be researched, so the vaccines could be safer, they wanted me to suffer in silence.
I rely on support groups, but social media keeps shutting our groups down. At first they succeeded in making us think we were rare, but now we have dozens of groups with thousands of people in them, and we know that we are NOT rare. All of us reporting to VAERS, the CDC, and FDA with strikingly similar symptoms.
The FDA and CDC have known about our reactions for months and have done NOTHING! Without their acknowledgment, doctors remain uninformed, there is no research, and therefore no treatment protocols. It’s hard to get medical exemptions, even if a second dose could kill you. It’s hard to get a doctor to even acknowledge a vaccine reaction in writing. Early on I went to the ER, and they dismissed my situation and wrote down that I came in for “chest pain” instead.
My kids miss me being active. Now they are having to help take care of me on my bad days. My husband has to work longer hours, since I have not been working. There is no financial help or recourse. Everything has been stripped away from me including things I love to do. We did our part and now we are being punished, forgotten and abandoned.
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