First Dose of Moderna on 3/10/21
Lynchburg, Virginia
Lot # 002B21A
Julie Elizabeth Music : https://www.reverbnation.com/julieelizabeth
Original Owner of RealNotRare.com
Contactable at vaxlonghaulers@gmail.com
Update 05/07/24:
I eventually was able to follow-up with cardiology and have a new heart monitor implant placed. I have confirmed NSVT and SVT among other things. My heart at times reaches near 300 bpm and doctors are concerned because of the crash in blood pressure during these episodes. I have almost passed out several times. I may need to look at ablation surgery but that won't necessarily cure it, and it has its own risks. It is something I am definitely considering, but honestly scared to death about. This was a condition I believe I had before the vaccine, but the vaccine must have triggered something to make it significantly worse and a lot more frequent.
My POTS makes it hard to exercise. I was given medicine to keep my heart rate down when I exercise but it brings my blood pressure down and causes me to faint. So that won't work.
Vertigo has continued to progress and get worst. I have gotten used to the feeling, but find that I have multiple spells a month if not weekly. I will be going to Duke in January of 2025 for a follow-up on this.
Small Fiber Neuropathy is still there but manageable. As long as I take days to rest between activity. It is the worst in the morning and late night.
I do believe my temperature regulation is a lot better. I seem to tolerate the hot and cold a lot better in the past year.
I have pushed through many of the symptoms and gotten a lot stronger, especially in the legs. Life is good and I'm not complaining. I know that it is just a very slow recovery, and takes time. I appreciate everything in life so much more than I use to, and for that I am grateful. I am definitely stronger and healthier than I was in 2022. A lot more capable too!
I got a red light therapy machine, and it helps a lot! I believe a lot of my increased vertigo issues (besides the inner ear weakness in one of my ears) comes from my neck and back muscles spasming and being weak. I have still not gained back all the strength and muscles needed in those areas. So when I am in pain or having spasms, the red light helps tremendously and I do think it is helping just a little with the vertigo.
My vision continues to deteriorate. I have been referred to a eye neurologist several times over the years but can't get a call back or an appointment. I just keep updating my glasses every six months.
I continue to flare up bad when I get sick, even with a mild cold. Feels like my body attacks itself or it triggers an autoimmune reaction all over again. So I find myself very cautious of who I am around and their illnesses.
Tinnitus is some better. It is a much quieter ringing now, but I get a ton of clicking sounds in my ears now. Not sure what that is about. I have been told the clicking is a form of tinnitus too but not sure what it means. My hearing is fine, as I have had that checked.
When I first had the vaccine I was a healthy weight (maybe a hair on the high side). I lost a ton of weight very quickly from the reaction my body had, and became underweight. I didn't have an appetite for over a year and would get nauseous when I ate. After about a year my appetite came back. About two years after the vaccine, and I started gaining weight like crazy. I became overweight. In the last six months I have started dieting and finally able to bring my weight back under control, but my metabolism is definitely a ton slower than it was before all this. It is hard because I am a shorter person who cannot exercise very much. So the only way to lose weight is strict dieting at the moment. We'll see how long that lasts. HAHA
Update 07/09/22:
I finally found an eye doctor to help me with some of the dizziness, disorientation, and head pressure issues I was experiencing. Turns out after have some neuro eye exams, I have Binocular Vision Dysfunction. My eyes are overshooting their targets both near and far. This has to do with dysfunction of the trigeminal nerve that feeds the eyes. I am waiting on prescription glasses to hopefully allow my eyes to rest and relieve some of the associated symptoms.
Update 5/17/22:
I was diagnosed with Small Fiber Neuropathy due to my abnormal sweat gland biopsy:
I was diagnosed with Peripheral Neuropathy based on my abnormal skin biopsy:
The doctor said it was indeed in line with what NIH told me and caused by an "immune mediated event" after the V. The following infographic shows that based on my biopsy that I likely have "Immune Mediated Neuronopathy":
This now is confirmed by my labs from Celltrend in Germany showing high TS-HDS antibodies (see infographic above and results of lab below). No one will tell me how to help the other anti-antibodies that I have developed from the V like anti-ACE-2 and anti-MAS1 among others:
Small Fiber Neuropathy is also confirmed by my abnormal Sweat Test/QSART (results below). You'll notice I also failed my tilt table test which indicates a condition of POTS.
Lastly - I want to point out that if my docs had taken this seriously early on and given me IVIG, it could have changed the course of my life.
I am still going to pursue Red Light Therapy and Hyperbaric Oxygen Therapy once I save enough money. Also might look for a doc willing to prescribe IVIG and also a homeopathic doctor.
Update 05/16/22:
I am having 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. I am not so convinced since I still have a lot of autoantibodies and inflammation.
As long as it doesn't progress, I have declined medications for now, due to the side effects.
Still don't have any answers in regards to the joint pain, weakness and fasciculations though. Rheumatology at UVA and other places have refused to see me. This is not a rare occurrence (Rheumatology is supposedly overwhelmed with patients). Whatever the reason, apparently they can pick and choose.
Have to follow up with cardiology eventually too, but at the moment I am just sick of doctors and trying to enjoy life a little again without letting this stuff consume it.
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.
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.
NOVEMBER 2, 2021 - JULIE'S RALLY INTRO SPEECH:
NOVEMBER 2, 2021 - JULIE'S RALLY SPEECH:
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 relapse out of the blue, 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.
We need informed consent. We need healthcare. We need freedom to choose. We need compassion and we need humanity to return.
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