This is a long hard story to write, but I hope it will help others. I think that is what this forum is about - our experience in an effort to help others. And it is to ask questions. I would ask that this be given respect and not be turned into a debate. I just want to tell my sad story and my many "wonderings." I apologize for the length.
Immediately after my second Pfizer I had a month of shortness of breath. As an AFib patient, this was of serious concern to my cardiologist. His response: a deferral from boosters. I didn't argue.
The following year I was sick during the Omicron era, lost my smell and taste but tested negative twice. Thankfully it wasn't serious. I had been taking vitamin D and had stocked up on other help from my local pharmacy - oil of oregano, zinc, quercetin and a nasal rinse. Covid was deadly and I knew historically effective treatments had been shut down. That was puzzling when normally medicine looks first to what has worked before in similar situations.
I continued to wonder...why weren't we, the vulnerable and immunocompromised, immediately given information with specific protocols to follow if we got sick? Even as simple as mine? Weren't the hospitals overrun? Why didn't the CDC jump up and down when treatments were suggested? It was all so negative and discouraging. My doctor refused to see me if I got the virus. He told me not to call him but to stay home with Tylenol and if I had trouble breathing to go to the ER. He even discouraged supplements. This was frightening to me. I knew I was on my own.
Back to my story. Also after my second jab, which was months before I contracted Covid, I went into a full-body inflammatory response. This resulted in a flare in my autoimmune condition and triggered my back issues (multiple) which had been stable for 25 years. Over the past year I gradually became less mobile and had to give up my cherished walks at the lake - exercise ordered for my heart condition. My physical therapist who had given me relief for years gave up on me. I am in pain day and night and if I go anywhere, I need a cane. I can't believe I'm applying for a handicapped parking tag this week. I feel like I've aged 20 years.
Because my heart ablation has been undone, my wonderful electrophysiologist put me back on his list for a second procedure. I had been AFib free until my second Pfizer but it came back, worse than ever. My medic-alert bracelet is arriving in a few weeks. My cardiologist says my increased shortness of breath (which is debilitating) is due to myocarditis. He hasn't suggested that it's rare and temporary. He's seen this before.
I continue to wonder: Why are stats the most dismal for the countries that have the highest vaccination rates? Why was Africa not decimated? A friend who lived there during the height of the pandemic tells me they all used prophylactics. Why did Sweden fare so well?
I've learned to trust doctors who are willing to stay with their training and their own professional judgment; doctors who use traditional scientific tried-and-true methods, who go beyond media narratives and are willing to question. Isn't that always how science has advanced? How is it possible that media and politics played such a prominent role in defining "science" for the past three years?
Why were traditional medical practices abandoned? Was it fear as we were told daily how high the numbers were? Fear is very effective in gaining power over the masses. Why use PCR tests that were not intended as a diagnostic tool? And when it was decided to use them, why was the cycle threshold score not standardized? Why the sudden one-size-fits-all approach? What happened to patient-centered care? Why were deceased patients who were hospitalized for other reasons but tested positive during their stay, tallied as Covid deaths? Could it have been to keep us afraid? Could it have been for the huge payouts to hospitals?
I thank God for the immunologists, virologists, epidemiologists, pulmonologists, cardiologists, pathologists and psychiatrists who didn't flinch. They retained their professional autonomy, perhaps mindful of Einstein's warning that "science can flourish only in an atmosphere of free speech." They continued as they had been trained, thinking scientifically and continuing to do studies and analyses, thereby preventing hospitalizations and saving lives. They drew up their own narratives in the beginning and they've been right all along. Sadly, it cost many of them their careers.
I know what it is for research to come to a prescribed conclusion rather than stay true to its purpose. It happened many years ago to a professor in our family. If my memory serves me correctly, his study showed the dangers of smoking. But he was threatened with a terminated contract if it did. That's scary. My nurse friend worked for Pfizer for 10 years and quit because they were cutting corners with trials. When she went to her supervisor with her decision he told her he was quitting too. That was also years ago. Are we to trust these people with EUA injections? With mRNA technology that was poorly trialed? They knew they hadn't done proper studies. Follow the money...?
My story includes a lot of sorrow and many questions. A final question: Are we wiser now?
Sincere best wishes to all,
marcyh
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marcyh
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You've had a tough time in recent years, so thanks for sharing your experiences.
Indeed, "How is it possible that media and politics played such a prominent role in defining "science" for the past three years?"
I would hope that with our emphasis on science - an evidence based approach, our respect for media hype and avoiding politics, our community has done the best it can to keeping us all safe. CLL Society has also done its utmost to provide timely information from CLL and other specialists on what we needed to do to stay safe during this pandemic. We've frequently referenced that source of CLL specific information here, as well as providing regular posts on the best evidenced information on how to survive an unprecedented risk to our community members.
I'm not sure how we avoid a debate if we wish to respect upholding free speech. Only posts that are not within the site guidelines, terms and conditions, such as spam posts are deleted in this community. Posts that are of a controversial nature can be a very effective way of educating those who are interested in learning about medical science.
With respect, you've made a number of statements in your post to which I'd like to contribute some more information:-
I'm not sure how we can have "historically effective treatments" for a virus we'd never seen before. I know that many ways of trying to improve the survival rate were tried and honed, not abandoned, in the year before we had vaccines and we now know much more about how to do so, even without the new antivirals and monoclonal antibody treatments. These were shared on preprint servers, published before the usual peer review process to speed the sharing of potential life saving interventions. With all of those new treatments not so gradually failing, we are falling back on traditional treatments that we now know work well for COVID-19. Papers that described approaches claiming results that could not be independently replicated have understandably been dismissed. Some of the more outstanding claims, e.g. for the use of ivermectin, were found to be due to faked data and the papers retracted.
Why use PCR tests that were not intended as a diagnostic tool? What should we use to differentiate between colds, the flu, RSVs and other respiratory infections for a new and deadly illness, so the most appropriate treatment can be given?
How was "mRNA technology...poorly trialled"? There were around 40,000 participants in each of the mRNA phase 3 trials. In facing the worse pandemic in over 100 years, we were fortunate that we had proven mRNA technology that had undergone previous human trials: healthunlocked.com/cllsuppo...
With respect to Africa, two confounding influences are the much younger population age distribution to the USA and Europe and the lack of confidence in reporting in the early years of the pandemic. I know others have addressed this question better.
The success or otherwise of Sweden's approach to dealing with the pandemic is debatable. The percentage of the population who died in the first year of the pandemic, in particular those who were at higher risk "the vulnerable and immunocompromised" (such as those in our community), was much higher than in its neighbouring countries.
With respect to "Why were deceased patients who were hospitalized for other reasons but tested positive during their stay, tallied as Covid deaths? Could it have been to keep us afraid? Could it have been for the huge payouts to hospitals.", I believe that this was debunked multiple times, for example fox11online.com/news/fox-11...
Indeed we can thank" the immunologists, virologists, epidemiologists, pulmonologists, cardiologists, pathologists and psychiatrists", not to forget the regular doctors, nurses, ambulance personnel, along with many other medical and other ancillary staff that have provided incredible support for the past 3 years.
With respect to your myocarditis, I'm sorry to hear about how that has impacted your quality of life. Myocarditis seems to be a risk from both COVID-19 vaccinations and COVID-19 infections, so it has definitely become a more common medical concern with the pandemic, though please note the conclusions of The effects of gender and age on occurrence of clinically suspected myocarditis in adulthoodheart.bmj.com/content/99/22..., "Men are significantly more susceptible to myocarditis than women. Young men are especially at risk for acquiring myocarditis, while women are affected most commonly at the postmenopausal age. The proportion of hospital admissions caused by myocarditis has an inverse, logarithmic association with age."
I hope that a universal vaccine will avoid the risk of myocarditis from vaccination by avoiding the spike protein, while providing some degree of protection from SARS-CoV-2. The spike was an attractive target initially, just as our bodies identified it as a way of neutralising the virus. It's why the monoclonal antibody treatments are no longer effective. Myocarditis from COVID-19 can be deadly; whereas people recover from myocarditis caused by vaccinations. We've learned from the billions of COVID-19 vaccinations which population groups are most at risk, but no vaccination is perfectly safe, hence the medical advice you received from your cardiologist and followed. It's a risk vs reward decision. cdc.gov/coronavirus/2019-nc...
"Are we wiser now?", now that the pandemic has been deemed over by many governments? I would hope to think so, but we are still seeing excess death rates with COVID-19 coming up to third most common cause in advanced countries and the abandonment of proven techniques that will prevent the spread of even very infectious diseases. (See the Fox news reference above for how the cause of death is ascribed.)
I'm very thankful I wasn't involved in the approval decision process for COVID-19 vaccines, knowing that some recipients might develop permanent health conditions or even die from their vaccination. However, from my research, there's a much higher risk from a COVID-19 infection than from a vaccination, per the attached plot for deaths from COVID-19 infections for those 50+ in the USA (the majority of our members fall in this age group). It's becoming increasingly difficult to avoid infection from the ever more infectious SARS-CoV-2 variants, particularly now that pretty well no one wears a mask and very few public buildings improved their ventilation.
The vaccine approval process was repeated in every country in the world, with differences in which vaccines were approved and the time taken to approve them. "National regulatory authorities have granted full or emergency use authorizations for 40 COVID-19 vaccines."
With respect to your tweet, 21 years on ' "It will take at least a year to a year and a half to have a vaccine we can use," Fauci said on March 3, 2020.'
As Fauci suggests "time" is a very important element of the trial process, 2 months has never been adequate. We can argue that they could not afford to wait, but that is a different debate. When you look at the issues that showed in the Pfizer studies...and there was plenty, remember this was only after 2 months, many things don't show until long after 2 months. I understand that this is not what people want to hear. Marych thanks for having the courage to raise this. Good Health to All.
I can only share my experience. Two Pfizers plus one booster and no problems, I have plenty antibodies more than one year after the last one. Go figure. I did not catch covid so far (as far as I know). If it was the vaccine that caused your troubles then don't blame yourself for taking it. Nobody could have known that you would react like this and become one of the few with serious side effects. There is no telling how you would have weathered covid itself without the vaccines. Could have been dead by now or in a worse condition still. There are no definite answers.
Hugs to you Marcy for a rough road the last few years.
As I've posted here before, wouldn't it be wonderful if docs always had all the answers and made all the right calls for our health the 1st time? Especially when things are brand new and never seen before?
But they don't, and they won't. Especially during times of crisis and novelty. And that's okay. Docs are doing their best to help us, just like we're doing our best to get up every day and live our lives to the fullest. And we have to accept that's all they can do - their best. And even with their best, they also are human, and have all the failings we have as humans. So, our care will never be perfect. Although, that's also why it's great that we can accept what they can do, but then seek out other opinions or our own - while they guide our medical path, we, the patient, are still the ultimate decision makers (at least here in the US).
So, hopefully, you can take what you've learned and use it as you live your continued medical path every day. My favorite bible chapter is Ecclesiastes Chapter 3. I firmly believe everything happens for a reason - my spouse is always flabbergasted when I tell him I think this even for my cancer. And then I recount all the ways the incredibly bad prognosis I got changed so many things in our lives from late July 2020, mostly for the better (to be fair - and some not), and how I was spectacularly more likely to die from Covid in 2020 than get this cancer at my age, especially with my uber-rare combo of genetic factors (and to be fair, both were wildly unlikely:). And I thank the One above that I'm still here to have made those changes and to continue to enjoy the life here.
Sometimes, life can be about how you look at it. It's cliche, but the thing about cliches is many tend to be kinda true...
I understand completely. Biggest failure of mRna vaccines was lack of adverse effects listed. The mRna vaccines are targeted to spike protein just like our targeted CLL drugs and they go off target just like our drugs do. Instead, you had early mRna vaccines being giving in supermarkets and etc. without any observation time used to detect adverse reaction due to their zeal to get everyone vaccinated. The first people who should have been vaccinated were the immune compromised. Skip the people 50 years and younger. Everyone was told the covid shots would stop spread zip. Also, drug companies were reluctant to develop covid drugs for small population. Should have been rolled out same as flu vaccines.
Since lots and lots of people refused to ever receive the shot and many also refused to properly wear masks or refrain from public gatherings early on, it is no surprise that the development of effective and generally safe vaccines did not end the pandemic.
Thank you so much for taking the time to share your story, Marcyh. You have certainly been through a horrible time, which must have been quite frightening for you.
Although, I have no answers to your questions, I recently read an Op-Ed in the Washington Post by Dr. Leana Wen about doing more for the immunocompromised.
The comment section got closed down after 152 comments, where a couple thousand comments would have been the norm for this newspaper.
Almost everyone was angry..either at Dr. Wen...at COVID restrictions...at the idea of making any accommodations...at the mixed messaging people received previously...one person wrote that as an immunocompromised person, they realized 40% of people just wished they would go away.
It was frustrating to read and sad.
I know this doesn't address your concerns but since COVID began, I've always been concerned that the immunocompromised were not getting the attention they need.
So glad to see this post. I have been telling people for the last two years that the Pfizer vaccine caused side effects in me including messing up my PFO (hole in my heart) and everyone calling for surgery. No way. But I said the heck with just young men getting myocarditis and heart issues. People I spoke to on the phone all over the country ALL knew of someone senior who had died or had a heart attack or stroke after vaccines. I never took a booster thank God. I did catch Covid last August, while my mother died of something else in a hospital and I couldn't be with her. I also lost my sense of taste and smell for awhile. I also think that was the Omicron variant. But I was also on leukemia meds which destroy your immune system, at the time. Once I went off the meds I was able to recover from Covid and never went back on meds. Lab Numbers are pretty good. However nodes in my neck have gone crazy. I also feel like autoimmune issues are coming out. Hair is falling out. Can't walk far without total exhaustion After first vax I had one capture of a-fib, but that has gone. My BP skyrocketed. My wbc went up 10,000 and my TSH for thyroid cancer went up FIVE times what it needed to be. My daughter had two vax and one booster. Her hair was falling out in handfuls and her entire metabolism or whatever you call it changed and now she's allergic to so many things. This from a young healthy vigorous young woman. Doctor after doctor after nutritionist after dietician after naturalists and they still don't know what is happening to her. I feel that it's just time that gets it out of your system. I fear for the future of all the young people who have taken the vax and boosters. They still have not done enough testing of future issues caused by it. I hope they do not make it mandatory for kids starting school. I hope they don't add it to the flu vaccine this year or I will not take it. I just continue masking up when I'm out. Nothing else I can do.
I'm sorry to hear you and your daughter have suffered all these terrible health issues. But bear in mind that your story is rarer than mine: I have had 6 vaccines and only had mild expected flu symptoms for about a day after 3 of them. I am happy I was vaccinated and no one in my family has had any issues, though my brother-in-law felt atrocious for a day or two after his first shot.
I know people who were not vaccinated who also had sudden fatal heart attacks and strokes. I wondered whether these might be linked to the increase in microwave exposure our population is undergoing. Cell phone frequencies of 5G systems are different, and the onset of 5G is coincident with the onset of the covid-19 pandemic.
A dear dear friend of ours, and another dear dear friend of my sister's died of a sudden heart attacks early in the pandemic before vaccines were even available. Both were men in their 50s using hand held devices in bed who suddenly started making gurgling noises and died right there. Neither had any previous idea that their hearts were bad. It makes you wonder.
We should measure the microwave fields and study the effect of these devices on our world and bodies before we put even more 4G and 5G antennas everywhere.
You are right about the different frequencies used by 4G and 5G. Microwaves primarily interact with our bodies by causing heating - the same way that we cook food in microwave ovens. In ovens, that's done by using very high power, typically 800 to 1,000 Watts and by bouncing the microwaves millions of times around inside the metallic cavity, so that they are absorbed by the food. The insides of the microwave oven are mirrors to the microwaves. (If you look at the glass doorway, you'll see it includes a metallic mesh that does the reflection.) Mobile/cell phones use far lower power levels; typically about 5 Watts and the power drops away with the square of the distance.
Microwaves heat food by rotating chemical bonds - mainly in water and fat and they heat from the outside in. That's easily seen by cooking scrambled eggs in a microwave oven. Importantly, how far the microwaves penetrate, called the skin effect, is inversely proportional to the square root of the frequency. 4G frequencies use the microwave spectrum from about half a gigahertz to 4 gigahertz. 5G uses up to about 50 gigahertz, so around 25 to 100 times the frequency. That corresponds to a reduced penetration of the skin of a fifth to a tenth of the penetration of 4G. For the exact same reason, sunburn from over-exposure to sunlight (a much higher frequency of electromagnetic energy), is limited to the top layer of our skin. Sunlight delivers about 1,000 Watts of energy per square meter to the surface of our planet at midday. That's why a solar panel can provide about 200 Watts of electric power at about 20% efficiency.
Per forbes.com/health/body/is-5...'For 5G, he says, “the electromagnetic waves have a higher frequency, which allows it to carry more information. It also has a smaller wavelength and does not penetrate the body as far as lower-frequency energy.”'
That microwave power drops away with the square of the distance is very important, because ironically, it means that having more 4G and 5G cell stations can result in a reduced risk of exposure to higher power levels. Most of the 4G and 5G electromagnetic energy exposure comes from mobile devices we carry, not the cell towers because of this square of the distance rule. Mobile devices cleverly conserve battery power by checking how much power they need to communicate and reducing their microwave transmission power accordingly. You might have noticed that you get reduced battery life when you are a long way away from a cell tower and this is why.
Amen. If I had had young children and living in a state that mandated vaccines for a young child. I would leave the state. There have been no long term studies on the effects of multiple vaccine shots on young children. In the past they said children should get it to prevent transmission… but we now know that is not true. It does not stop transmission. I have lost faith in the independence of doctors. They all used to be independent and self employed. Now they all work for large healthcare organizations and their careers can end if they make a misstep from the narrative. I don’t know if our medical institutions can ever gain the trust back.
I'm really also very very sorry to hear about your suffering and your daughter's suffering. I really hope you both feel better and are able to recover your health. Best wishes!
Hi Marcy, sorry I'm late to post a reply. Just to say, you're not alone in your doubts regarding these mRNA shots, tests etc. I now get tachycardia, have more shortness of breath since these shots. I've done a lot of research & reading, same as I know you have. We have to be our own advocate in these times. Just wanted to say, I hear you. From another Canadian.
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Are you a vaccinated CLL patient who got covid infection anyway?
Would someone shed some light on a few questions regarding a continuous drop in ALC and the connection to lymphocyte % means? Thank you! 
Iola ghulam
Clinical Trials studying COVID-19 vaccines in CLL: Some have begun/ others are coming!
3RD COVID VACCINE SHOT TO BE APPROVED WITHIN DAYS
