Why Boosters Matter

22 12 2021

Why is the COVID-19 booster SO important?

I’ve been participating in a study with University of Texas who are studying antibodies. When I got the results to my first blood draw my antibody level was 512. Low end of the range is 0.8 and the high end of the range is 2500. If one was looking to have an antibody level at its best, you need to be closer to 2500.

Once I got this level back I went and got my booster on Sep 23.

I just had my blood drawn last week for blood draw #2 (week of Dec 12-18). They are following me over a 6– to 8-month period of time. I’ll be getting another one in a few months from now. My antibody level came back as OVER 2500. Not too bad after almost 3 months since my booster. I feel really confident now going out continuing—as I always have—wearing my mask in public and washing my hands for at least 20 seconds (which I hardly see anyone in a public restroom doing anymore). Of course, everyone will have a different result but for someone who takes immunosuppressants for lupus this is so wonderful for me.


Overcoming Fear: The COVID-19 Vaccine

27 01 2021

Some of you know my family and some don’t.  To summarize, my son developed a brain injury from vaccines as an infant.  He carries a diagnosis of encephalopathy (among many others) which was given to him by his mainstream Texas Children’s Hospital pediatrician.  He has a medical waiver for all future vaccines.  I want to make it VERY CLEAR: I am NOT an anti-vaccine person.

I have multiple complex medical diagnoses, but if you read my blog from the spring, you know that I have lupus.  I have a history of exaggerated responses to vaccines; the last one I got was a tetanus injection at least two decades ago.  It was a very bad reaction and I was not going to put myself through that ever again.  My husband is extremely healthy. 

Like the rest of the world, I have been waiting to see what the COVID-19 vaccines would be, what would they look like, how would trial volunteers tolerate them, and what EXACTLY (and I mean EXACTLY) was in them.  My go/no-go on the vaccine was going to be based on all those things.  I am hoping that my experience will help you make the decision for yourself.

Now older, my son lives in a group home setting with two other young men who, without compromising their primary diagnoses, have things that would put them at high-risk.  The group home agency has taken many precautions to not let COVID-19 reach their homes.  I don’t know exactly their success rate, but I do know it has not reached my son’s house.  We are careful ourselves because of my own diagnoses.  My husband has been working from home since March.  We have no family who lives here in our area except for my son.  We have not visited with friends.  I have a job that allows me to work outside for the most part and that is not even very often.  We go through the drive-through at the pharmacy to pick up things unless we absolutely have to go into a store.  We wear masks.  We do curbside pick up for our groceries.  We socially distance unless there is some odd circumstance where we can’t (rare).  If I am in a store and someone walks in without a mask on, I leave (and I don’t care if I’ve been there 15 minutes already and am almost finished).  You get the picture.  We are exceedingly careful, but COVID-19 seems to be closing in and affecting more and more people we know (but haven’t seen). 

I read the ingredient list of the Moderna vaccine. After looking thoroughly at all the “additional ingredients” in the vaccine, I felt comfortable for my son to get it. 

About 4 weeks ago, we were told that the group home agency, since it was considered by the state as being similar to what a nursing home would be, was going to be vaccinating anyone who wanted to be.  It was the Pfizer vaccine.  I had been a bit perturbed with Pfizer because they were refusing to release an ingredient list for them which made me suspicious of them immediately.  Moderna had full, open disclosure so that gave it one notch in the “trust” column.  Then I found a breakdown of it on the MIT website.  In the December 9, 2020 article, it broke it all down.  It contained mRNA; lipids (which is the same vehicle used by Moderna); salts (potassium chloride, monobasic potassium phosphate, sodium chloride and basic sodium phosphate dihydrate); and the only “other” ingredient was sucrose. 

We decided to sign him up.  We would bring him home with us that weekend so we could CLOSELY observe him. 

Two days prior to him receiving it, we got an unexpected surprise.  We would also be allowed to get the vaccine.  It became a matter of dosing with the vials so that none of it was wasted.  We filled out all the appropriate paperwork.  I contacted my rheumatologist to weigh the pros and cons for myself; he said succinctly: 

Whatever your reaction is, it would be less life-threatening than if you got COVID infection. “

The Day of Injection

I was having a mini-panic attack about doing this.  We met our son at the site.  The pharmacist spent a LOT of time with us, especially with Patrick’s and my medical histories.  You could tell the pharmacist was nervous about all this, too, but isn’t that what they were expecting?  They were vaccinating people with disabilities.  The pharmacists were rattled by one person in the room who clearly had Tourette’s.  I heard a comment under the pharmacist’s breath about him needing to be quiet.  The young man’s vocalizations made him jump where he was sitting. I tried to explain to him that it was part of the young man’s disability; it wasn’t anything he was doing deliberately and he just can’t “be quiet.”  I tried to be nice about it; after all, he WAS about to put a needle in MY arm.    We had numbed Patrick’s upper arm so he wouldn’t feel it going in.  I numbed mine, too (I’ve developed a needle phobia over the years after all the poking and prodding).  He asked for Patrick to wait with us for about 20 minutes more–which would be 40 minutes in total as the pharmacist had spent 20 minutes with me just getting my history and understand my complex medical issues).  He wanted me to wait about 20-25 minutes, too.  The pharmacist told us to rub the injection site for about 30 seconds twice a day for a few days. 

Patrick didn’t even move.  Jeff is a pro at getting vaccines so it was no problem for him.  I did feel it go in a little (but it wasn’t as painful as a needle for blood work).  The vaccine itself was mildly burning; I imagine that might be the “salts” in it. We were all fine and Patrick hopped back in the van to go back to his group home; we planned to get him later that evening and keep him through the weekend to monitor him. 

I happen to have “princess and the pea” syndrome.  What is that, you say?  It’s not an official medical syndrome but it is the fairy-tail story of a princess who was able to feel a pea that was on bottom under 100 mattresses.  I’m the person who would feel the pea.  It’s important info for some of these observations I am about to share:

Before we left the parking lot (so about 40 minutes after the injection) I told my husband I could feel something different going on inside.  I also felt, for lack of a better word, like a space cadet.  Then a few minutes later I told him my mouth got super dry (maybe lasted maybe 20 minutes).  We had to stop to pick something up before going home.  When we got back to the car, I said, “I know what this weird feeling is—I’m exhausted.”  My husband agreed he was starting to feel that, too.  About two hours later the tiredness got worse (like “I need a nap” level).  I noticed my spine in the cervical area up into my head was throbbing (this is also where my pseudotumor cerebri headache emanates from so I don’t know if the vaccine had some effect on that; this particular disease is only 1 in every 200,000 people and common in people with lupus).  We both took naps.  My husband noticed for him that his eyes got oddly dry (versus me with my mouth getting dry) in a different way than he usually experienced.

Subsequent Days

The next day (Saturday) my husband had no symptoms at all—not even a sore arm.  My son didn’t appear to be hurting or to be tired in any way; he is nonverbal and doesn’t understand if I ask him “where does it hurt.” He cannot even answer that question with pointing to where it might hurt. I was still exhausted enough to need to stay in bed most of the day and slept.  About two-thirds of my upper arm was hurting (both moving and not moving it).  My headache had now changed to involving my entire head, slightly throbbing.  Later that night, though, I felt like I was going to pass out.  My blood pressure was crazy low.  I took it both sitting and standing.  Sitting it was 104/71 with a pulse of 62 and when I stood up it was 69/42 with a pulse of 69.  I took it twice to be sure about 15 minutes apart.   Not sure what to make of that.

On Sunday, my arm was better.  I was still having some weird blood pressures and I still had that bad headache but I was less exhausted.  I did stay in bed again most of the day but didn’t sleep as much.

On Monday, I was less tired and as the week continues to progress (it now being Wednesday) that has improved a great deal to where I’m back to normal.  However, this headache remains.  I’m hoping this will improve soon, too.  

I hear the second dose is supposed to be the one where you might get a fever and some other kind of symptoms.  I will report back. 

This was, by far, the best vaccine I’ve ever received.  I’ll let you all know how the second dose goes.

February 12, 2021 Second Dose Update:

My husband wound up having the usual reaction to the second injection. He was tired and on day two he had chills and fever. My previously vaccine-injured son still had no reaction that we could determine. Surprisingly, my reaction was better than the first injection. When I shared with the CVS Health professional what my reaction to the first one was, she said, “Well maybe this second injection will not be like that.” And she was right. I had a much better experience. I was only tired for 2 days, in bed for one full day from the exhaustion, but up and about on day 2, but just taking it easy. I did have a headache that lingered a day or so more, but I’ll take it.

First, Do No Harm – Open Letter to Doctors

27 03 2020

Primum non nocere is “one of the principal precepts of bioethics that all medical students are taught in school and is a fundamental principle throughout the world. Another way to state it is that, “given an existing problem, it may be better not to do something, or even to do nothing, than to risk causing more harm than good.” It reminds physicians to consider the possible harm that any intervention might do. It is invoked when debating the use of an intervention that carries an obvious risk of harm but a less certain chance of benefit.”  Prescribing medications with a less certain chance of benefit would be in that category.  Prescribing medications that creates a shortage for people who need this medication for serious illnesses would be causing harm. 

It is now news that doctors are now sending in prescriptions for hydroxychloroquine and Z-Paks, even though THERE IS NO CLINICAL STUDY THAT SAYS THIS WORKS against COVID-19, not only for THEMSELVES, but their families, their friends, and their office staff and God knows who else.  You think you aren’t doing any harm, BUT YOU ARE.  You are taking away a valid treatment option for people with lupus and rheumatoid arthritis.  At a press conference, Dr. Fauci even stood up to say, “The information that you’re referring to is anecdotal. It wasn’t done in a controlled clinical trial, so you can’t make a definitive statement about it.”  But there was President Trump is constantly spreading the name of the medication; it even caused a tragedy that didn’t need to happen to a couple in Arizona who decide to ingest chloroquine phosphate that they thought was the compound Trump kept saying over and over and over again.  The man died; the woman said she specifically tried it because it was the name the president said.  But it wasn’t the exact one he was spouting.

According to a report by BuzzFeed who saw this woman’s note, Kaiser Permanente thanked her for her sacrifice since the medication would be used for COVID-19 patients.  See this link for the full story.  Below is the picture.  It came from kp.org so it is a valid text message. 

Lupus and rheumatoid arthritis patients who rely on this medication now cannot access it because of your unethical (at best and perhaps criminal at worst) behavior.  I hope when this is all over they do an accounting with the pharmacies to figure out who called in an unusually high number of prescriptions (comparing all local pharmacy’s data just in case you covered your tracks knowing that it may be scrutinized) to see just how many prescriptions of this drug you prescribed in March 2020 and going forward and compare it to your prescribing habits of this medication for the year prior.  There needs to be an ethics inquiry with loss of licensure to any doctor who did.    

I tend to have lots of side effects.  Kaiser Permanente alludes to the fact that there are “other medications” lupus and rheumatoid arthritis patients can use instead to free up the hydroxychloroquine. Are they telling people receiving this for off-label use hydroxychloroquine may cause macular degeneration because I have to get eye exams every 6 months?  I have been on this medication now for 10 years.  When I called my pharmacy, they said that yes, it was happening in our area (the doctors’ behavior) and yes, they were having great difficulty getting more.  I then, in a heap of tears, fell apart.  I told them the two medications I was given a choice of was hydroxychloroquine or methotrexate to try at the beginning of this process. 

So let’s review:  Doctors, who are scared and are human, but took an ethical oath not to do harm, are now causing harm and I have to choose between not getting hydroxychloroquine which I know works for me and I have zero side effects, to move to a drug used for chemotherapy for breast cancer and all the side effects that would come with since it would be a new drug in my system.  I let my pharmacy know that I would have to call my rheumatologist to come up with a plan. 

The plan would be I could take 1 pill a day to try to stretch my supply for 2 additional weeks, but if by 4/20 my pharmacy is not able to procure it to fill my prescription, then he wants to put me on a drug called Benlysta versus going to methotrexate. 

I looked up that medication.  Once again, I burst out into tears that I am being forced to make difficult choices to make YOU FEEL SAFE.  This is bullshit.  Is this drug benign?  Oh hell no. 


You watch….If I am forced onto this medication, I will find out that my insurance won’t cover it and I’ll have to get some sort of “deal” with the pharmaceutical company.  I’ll be the one that gets PML that requires hospitalization.

But let’s talk about the medical industry as a whole. There is what I call the “BRO-CODE.” I worked for a cardiology group a long time ago.  I remember the doctors in the group talking about other doctors and would tell us this one was addicted to drugs or that one was doing XYZ.  I remember asking them, “Why don’t you report them then?”  It was then I learned about the BRO-CODE.  No doctor rats out another doctor even if that other doctor may be putting their patients under that doctor’s care at risk.  It was so wrong.  But I was young and kept my mouth shut.  When doctors would have affairs with their office staff, I kept my mouth shut. When staff took medication samples from the closet (including drugs like Ativan), I kept my mouth shut. I was part of that BRO-CODE….until I started being blamed for things I had not done. I left.

Later when I worked for a medical transcription company, I would hear stories about some of the doctors.  One was Dr. Eric Scheffey of Houston, Texas.  He became a notorious workman’s compensation doctor who performed way too many unnecessary procedures and killed many of his patients and maimed too many more.  He had a $6M mansion, had a private jet, multiple Ferrari’s and a horrible cocaine habit.  Of the ones he didn’t kill, he maimed others and left them in chronic pain forever.  At least four of them committed suicide from their chronic pain they didn’t have until he operated on them. His license was suspended in 2003.  In 2005 it was finally revoked and he was fined $845,000.  Despite reports from colleagues and nurses (one described that he had slurred speech) during surgery, no one actually stopped him or refused to scrub in. He was named “Eric the Red” because of the large blood loss volumes of his patients.  But he continued to be allowed to practice.  Police arrested him after he was higher than a kite on cocaine at a Montgomery Ward store; they found 30 grams of cocaine in his car.   But after a whole bunch of this stuff, he only lost privileges at three of the hospitals.  I often heard stories from the people in the medical records’ department about this man.  I could not believe he was still allowed to perform surgeries at their facility (and another hospital).  This is the BRO-CODE.  When a judge ultimately tried to revoke his medical license, the Medical Board reversed it and gave him a 5-year probation.  But then a district court overturned their decision and let him go back to practice without ANY restrictions.  An appeals court overturned the district court.  But his probation was almost over.  He continued to work and went right back to what he was doing.  Scheffey’s practice had never operated quite so efficiently, relying upon an elaborate network of enablers that included fellow surgeons, nurses, radiologists, anesthesiologists, and a system of insurance and workers’ comp approvals that was easily gamed. The TWCC (Texas Workman’s Compensation Commission), which, in effect, controlled 90 percent of his revenue, not only allowed him to continue but failed to challenge him when he was asking for approval (in one case, for the fifteenth surgery on one patient). Once the TWCC approved it, there was little anyone could do.  He continued to maim and kill people without any checks on him.  This is the BRO-CODE.  His license was FINALLY suspended in 2005.  But he found a way around that with another enabler.  In its 2004 complaint, the state medical board also charged Scheffey with practicing medicine with a suspended license, a third-degree felony punishable by up to ten years in prison. According to the complaint, Scheffey continued to practice medicine even after his 2003 suspension, using his partner Dr. Floyd Hardimon as a front. When the board temporarily suspended Hardimon’s license later in 2003, it did so in part because it found that Hardimon “associated with and aided and abetted [Scheffey] in the practice of medicine after [Scheffey’s] medical license had been suspended.”  In 2005, he was arrested in Aspen, Colorado for practicing medicine without a license.  In 2007, his trial started.  Prosecutors decided to dismiss the charges after three days of testimony.  He never suffered any consequences outside of settlements with the victims or his victim’s families if they had died.

If I find out you are among one of my doctors who have done this, you will have no place in my care team.  I will always wonder if you were putting your interests above what is best for my health and that you were so willing to toss aside your oath to your patients in order to take care of yourself, your family, your friends and your office staff first.  And I will report you to the Medical Board.  Count on that.

Coronavirus (COVID-19) Update: The totals March 11, 2020

11 03 2020

The Maps and Charts March 11, 2020

Fantastic news from China!  Only 25 new cases from March 10 to March 11.  Today marked the point where the United States went over 1000 cases (1015 confirmed cases).  I am sure this number is going to grow exponentially in the coming weeks.  Thirty-one people have died from this virus (deepest sympathies to the family and friends of all those individuals).  The COVID-19 virus is affecting 104 countries now.  New countries to the list are Panama and Turkey.  There are new graphics below as well.   In the graphics below you can see that Japan has 1277 cases (but 696 of those cases came from a cruise ship quarantined in Yokohama).   Lebanon has experienced their first casualty.  Countries that have no new confirmed cases to report in 24 hours (doesn’t mean they don’t have more—their numbers will go up) are:   Algeria, Andorra, Armenia, Bangladesh, Bhutan, Brunei, Bulgaria, Cambodia, Cameroon, Costa Rica, Ecuador, Estonia, Faroe Islands, Georgia, Gibraltar, Hungary, Jordan, Liechtenstein, Macau, Mexico, Monaco, Mongolia, Nepal, New Zealand, Nigeria, Senegal, Serbia, Sri Lanka, Togo, Ukraine, Vatican City.  These totals are from 2:03 a.m. ET on March 11, 2020. 

Coronavirus (COVID-19) Update: New info about the virus

11 03 2020


This warrants its own blog post.  Here is a warning.  This is going to flip everything you have heard about this COVID-19 virus.  This was a study that was published by the New England Journal of Medicine on February 28.  These are the take-aways from that report.

The WHO has updated the death rate on Wednesday to 3.4%. 

The study from the NEJOM looked at 1,099 COVID-19 patients.  The majority of non-severe cases (60%) are teens and adults between 15 to 49 years old which could suggest this group is spared the worst.  In the public, this is what we have been told up until I read this today.  The truth is severe cases were slightly more prevalent in the younger demographic.  Of the 163 severe cases reported in the study, 41% were young adults ages 15-49; 31% were ages 50-64; and 27% were ages 65 and up. 

According to the Chinese CDC, after looking at 72,000 patients, millennials and Gen Z are also just as likely as the older groups to contract the virus.  Risk should be factored by underlying medical conditions.  So, what are the risks?

This is where it gets a little graphic.  “The novel coronavirus tears apart the lungs” but, according to the American College of Cardiology, they state the condition that is most connected with the worst outcomes are heart issues.  Examples would be high blood pressure, acute cardiac injury, arrhythmias, hypotension, and tachycardia as well as atherosclerosis.  They are not sure exactly why other than the heart and lungs are interconnected.   One study in China of 150 patients from Wuhan, China, they found that patients with cardiovascular disease had a significantly increased risk of death when they are infected.  Dr. Erin Michos, cardiologist of Women’s Cardiovascular Health at Johns Hopkins Medicine in Baltimore said a lot of people are walking around unaware of plaques in their arteries or that they have hypertension.  The CDC said 108 million Americans have hypertension but at least 11 million have no idea they have it.   Diabetes is often associated with cardiovascular problems and it is in the high-risk category.     

Next issue is chronic respiratory illness (like cystic fibrosis, COPD, asthma or reactive airway disease or allergies and people with lung damage linked to smoking).  There is a long incubation period which ranges from 2 to 14 days. 

A new study in the Lancet has found that coronavirus patients SHED THE VIRUS (which means they are still contagious) FOR (sit down for this) BETWEEN 8 TO 37 DAYS.  Thirty-seven days!!!!!!!??????  Oh, I’m screwed.  I take immunosuppressants and I can’t be around anyone who has gotten a vaccine with live virus because they shed the virus, too.  Back in 1997 when they were giving the oral polio solution, I had to get my son the inactivated polio injection so that I didn’t have to go away until he was done shedding polio virus.  There were cases with my disease where people got polio by being around people who got the live virus.  Now that is the standard of care (the IPV versus OPV). 

So why is this a problem.  Here is what I envision:  Person A is exposed to someone with COVID-19 or maybe they think they are coming down with symptoms and their doctor asks them to stay in their home for 2 weeks.  Let’s say they get the very mildest form of this.  They call their doctor and say, “I got a scratchy throat but that was it.”  Doctor says, “Well, if you didn’t have any other symptoms than that then maybe it was just allergies but stay in your home for the 14 days just to be on the safe side.”  Person A goes out in public on day 15.  From day 15 until possibly 37 days they are shedding virus wherever they go and people start getting sick. 

Dr. Enid Neptune, a pulmonologist at Johns Hopkins Medicine, said that with any chronic respiratory illness, she would advise her patients to come up with a plan of protection with their doctors which might include knowing which nearby hospitals employ respiratory specialists. 

Cancer patients and immunocompromised individuals are also at risk.  Dr. J. Leonard Lichtenfeld, deputy chief medical officer for the American Cancer Society in Atlanta said this in an interview: “Patients who have had cancer treatment in the past may also remain immunologically compromised even though they appear to have recovered.” 

The Chinese CDC recorded 44,600 confirmed cases with children involved, but only 400 involved kids under 9 years old and none died.  The question is postulated are children less likely to be infected or that they just didn’t get sick?  Dr. John Williams, Chief of the Division of Pediatric Infectious Disease at the University of Pittsburgh Medical Center thinks the latter is true.  Once testing begins to include more mildly symptomatic patients, outpatients in clinics, and doctors’ offices, they’ll find a lot more kids who are positive (as well as the adults). 

China also has suggested that the virus can spread BEFORE symptoms present, but there is no evidence for these claims so far although Raina MacIntyre, a professor of global biosecurity at University of New South Wales, Australia, said that young people could have the virus without displaying any symptoms. 


Dr. Robert Redfield, director of the CDC said this:  On copper and steel, it’s about 2 hours.  On other surfaces like cardboard and plastic it is longer and so we are looking into this.  The Journal of Hospital Infection found that coronaviruses may persist on surfaces for up to 9 days.  Best thing you can do after handling a package would be to wash your hands. 


According to the Lancet’s January 24th edition:



Dry cough

Fatigue or muscle pain

Breathing difficulties


Coughing up mucus or blood



Kidney failure