Help Ester Amy heal from vaccine injury

It's really hard for me to do this, friends, but I am reaching out for help. Sometimes life gives us lemons, and sometimes we can quickly squeeze those lemons into lemonade and move on. Sometimes life gives us lemons, and though we squeeze, the lemonade trickles very slowly. I've been prepared for the former type of lemons, but not the latter.

 

I have been ill since June 2021 with a mysterious condition that has impacted multiple organ systems. I have been worked up extensively at two top-tier American teaching hospitals by neurologists, neurosurgeons, cardiologists, otolaryngologists, infectious disease doctors, rheumatologists, and now an immunologist.

 

After five months of seeking help and seven months of being ill, I have received no treatments and no diagnosis.

 

I believe that my neurologist thinks I have dysautonomia, which is a malfunctioning of the autonomic nervous system. I do not know if this condition is reversible, but I am trying.

 

Currently, it seems I have issues with the electrical system of my heart, blood flow, blood pressure, heart rate. There may be issues with the nerves which innervate my vasculature. I also have problems with my digestive organs.

 

I have or have had (some symptoms come and go): extreme fatigue, brain fog, peripheral nerve pain, exercise intolerance, heat intolerance, near syncope, vertigo, dizziness, heart palpitations, throbbing arteries, tinnitus both pulsatile and tonal, alternating constipation and diarrhea. I also seem to have new allergies to food, substances, medications, and even the sun.

 

Sometimes dysautonomia is idiopathic and sometimes caused by an underlying condition. If the underlying condition is healed, it is believed that the dysautonomia can resolve. I believe I have an underlying condition. In my case, I believe the culprit is the immune system. My current doctors are not addressing this and are refusing to order labs to investigate it further. They are refusing to send me to specialists who might be able to figure it out and treat me. I have been pleading for months. I am currently on hold, waiting to see a specialist who is unavailable until November 2023.

 

Not only have I been sick for seven months; I feel mentally and emotionally abused by doctors for five of those seven. They have failed to notice symptoms or minimized my symptoms. They have failed to give me timely referrals and order tests. They have failed to listen to me and take me seriously. And in one or two instances, I believe I was misdiagnosed and given a treatment that further harmed me.

 

The adversarial relationship with doctors is causing me extreme emotional distress and worsening my symptoms, in addition to wasting my time.

 

I preface this by saying something I think most of you already know: I am not nor have I ever been an anti-vaxxer. Many of you also know that my mother died of Covid on January 23 in her memory care in Chapel Hill, NC. On March 20th, I drove from Chapel Hill to the FEMA clinic in Greensboro and stuck out my arm with tears in my eyes.

 

Some of you may remember that just before my mother's death, I had been advocating for the residents of long-term care facilities to receive the vaccine more quickly. Tragically, my mother passed just two days before her facility was inoculated.

 

I now believe that my inoculation with the Pfizer Covid vaccine caused this harm to my body. It took me a long time to arrive at this conclusion, and I have done it with much care and discernment. My belief is difficult to prove because as my doctors have said, "We have no data." It is even more difficult because the worst part of my symptoms did not come on until 6-8 weeks after I got the jab.

 

I am still the same me. I am not standing on a street corner with a placard that reads: stop the poison. I still mostly believe that vaccines are safe for most people. But I also know as a lived fact and through my contact with others who have the same symptoms and onset as I do, that there is a subset of people who were harmed by these vaccines.

 

Some of them are getting help and improving. For whatever reason, I am among the group not getting help.

 

I am asking for your assistance because I have realized I must do whatever it takes to get out of North Carolina and back to NY. For whatever reason, care here has been abysmal. My NYC PCP is now my only true ally. He is preparing to put together a team. There are hardly any doctors in North Carolina who specialize in dysautonomia. Columbia, NYU, and Mt Sinai all have programs. I am going home. Moving is going to be hard and expensive. I don't even know what I will do with all my belongings. I may have to break my lease or ride it out until August.

 

I also realize, that in addition to my regular doctors, I need to pursue alternative care relentlessly. This is all care that is not covered by insurance and is generally expensive.

I also need some diagnostics, particularly tilt table and other autonomic testing. Although this should be covered by my insurance, the waits for these tests are absurd here and I will either have to travel to get tested or pay a functional neurological chiropractor $800 out of pocket. Without these tests, I have no formal diagnosis and am being left to rot. 

 

I have not worked since the pandemic forced me to shut down my in-person hands-on healing business in March 2020. I was preparing to jump back in when I took ill. I don't think I will ever be able to do that work again and have to consider what moving forward will look like, but right now, I am not in a position to think about that.

 

 

My intention is to heal from this, to reverse it, or at least to recover enough that I am able to function in my life. If I sit here and wait for these do-nothing doctors, I will wither away.

 

 

 

By way of explanation, here is an unsent message I wrote to my neurologist. It's probably best for me to not send it, just to move on.

 

 

 

I need to share with you that I am feeling despondent. I feel that I am damned if I do, damned if I don't. I am worried that if I bring up the vaccine, I will be treated like a kook with an agenda, but if I don't, I won't receive appropriate care. I am not an anti-vaxxer. My mother died of Covid on Jan 23, 2021 in her memory care in Chapel Hill. On March 20th, I drove to FEMA in Greensboro and eagerly stuck out my arm with tears in my eyes.

 

I also feel like if I stand up for myself and demand help, I am treated like a strident "Karen" or worse a crazy "Lizzie," but if I am a docile "Sue" I am just going to wither away.

 

As I mentioned before, I am in facebook groups with people who have similar symptoms as I do. Many had an immediate onset of sx; some were slow burns like me. Some had positive biopsies for SFN and some were negative, like me, but are still experiencing pain. Some are being diagnosed with POTS and MCAS. Some have GI issues too. There are reports of people not being able to swallow. My GI issues seem to be on the other end. 

 

My witnessing of the others and my assessment of their authenticity have thoroughly convinced me of what happened to me.

Some of the others are improving with treatments such as IGIV and steroids; some are improving with time. Others are not improving. And it seems to me, that the ones who are improving are the ones who are receiving confirmatory and supportive medical care. 

(Ironically, it seems that those who got vaccinated in the Autumn to save their jobs are getting help more quickly than those of us who eagerly got vaccinated in the Spring.)

 

I now think the POTS set in in early/mid June, but I may have had earlier symptoms and was unaware. But by June, the fatigue was extreme, and now that I look back at it, I may have had near syncope a few times. I think it was not recognized at the time, but I believe I was having an allergic reaction to the doxycycline in late Sept and Oct. and this made everything worse. (I seem to have allergies to things I never had allergies to prior: band aide adhesive, the sun, wine and beer, high histamine foods, local anesthesia, contrast agent are a few. If I drink only one glass of wine just now, my whole body feels like it is on fire.)

There were several times I went to UNC urgent care seeking help for extreme cramping, vertigo. My  complaints were  always minimized and no one seemed to care that my blood pressure was very low through that time. Some bp readings are in my chart; some are not: when I went to the dentist on Oct 13, my bp was 80 something over 50 something. When I tried to have the first NCV, but he had to stop because I cried out in pain, I was at the height of that allergic reaction. It was Oct 25th, the day prior to the vertigo episode. I believe that the inflammation was so bad at that time, I could barely let him touch me. That neurologist seemed very surprised by my response, but no one from his office ever followed-up with me. 

When I first met you on Oct 15, I believed I was improving. At the time, I thought that the doxy had worked somewhat, but in retrospect, I think that I felt relief of many of my symptoms simply because the weather had cooled. 

I don't believe I had active ehrlichiosis in 2021. My pre-treatment (9/19) and post-treatment (10/30) titers are completely flat. 

 

My cardiologist is now reporting that the results to my holter monitor were normal, but he was only looking for dangerous arrhythmias. I asked him if there was any way for the holter to be diagnostically useful for dysautonomia because I noted that I had heart rate reads of 145 at the high end and 49 at the low. The week I was wearing the holter, I was home alone the whole time, working online. I was not working out or having wild sex, just puttering around in my jammies. I had no excitements or upsets, nothing that should have made my heart rate go to 145. Also, I just became aware: what are all these PACS, PVCs, and PSVCs? Is my cardiologist ignoring that the electrical system of my heart is not working?

 

I also now realize I may have exercise intolerance. I thought it was just that I was out of shape, but when I try to go for vigorous walks in the hills, I get very winded very easily. I particularly get winded when I bend down to pick something up. I have gained 10-15 pounds through this illness.

 

I have been through 5 months of diagnostic hell. And now it seems very clear to me what happened and what is wrong, maybe not at a very technical level, but at a general level. Something went wrong with my immune system and it is impacting parts of my nervous system. That is why I think prednisone helps or at least temporarily helps.

 

I don't know why I should be being asked to wait for months for more diagnostics or to see more specialized specialists. I need help now; I needed help 5 months ago. I understand that diagnostics is sometimes a process of elimination, but we've been through it. I don't even need a tilt table test. I will gladly come to your office and one of the nurses can give me the standing test. I feel like I spent that last 5 months trying to build a case that I was sick so I could get help. I have built my case. I rest my case. Can someone please help me?

I don't understand why a very smart neurologist plus a very smart immunologist or rheumatologist should not be able to help me. I don't think the heart failure specialist to whom I have been assigned would understand any better how to help me than a good neurologist could. Someone should be able to devise a program to help me get better or at least give me a fighting chance. If it was the vaccine that did this to me, wouldn't it be more likely reversable? Wouldn't someone at Duke be able to help me now, not five months from now?

I feel that I am being treated very inhumanely and I did nothing wrong. I have been a model citizen throughout the pandemic. I got vaccinated. I was told they were safe.