Covid-19 Testing Comes to Durham NC but You Probably Won't Qualify

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I'm ambivalent about announcing that WRAL news says there is now Coronavirus testing in Durham NC.  However they say you must use the online screening to qualify.  And I didn't qualify, big surprise!  And then I lied a bit to see if I could get it to work.  I didn't say I was a healthcare worker, that's one fib too far.  I wasn't able to use any combination of answers to their screening questions that I could think of, short of saying falsely that I am a health care worker.  Earlier in the pandemic, CVS and Walgreens were advertising testing for healthcare workers only.  So I think that's still the case.

This is a rant.  If you don't like rants, stop reading now.

From my brief testing of the screening site, if you say you have symptoms, if you checkmark any of the items which are classic symptoms like "shortness of breath (not serious)" it tells you to go to an Emergency Room right away.  They ask for no details like "is shortness of breath normal for you?"  For me, it is.

  1. The first time I was honest, and it told me to go to the Emergency Room. This contradicts my doctor's advice.  I'm in touch with my MD.  The end result though, is that they'll deny me a test because my symptoms are too severe. 
  2.  The second time I said I merely thought I might've been exposed.  And it told me I don't need a test.  This is despite the fact that I could be infectious for 14 days without symptoms according to the tests done on soldiers from the USS Theodore Roosevelt.  That's exactly why this virus spreads so quickly.  
  3. Finally I took another tack and said I had been on a cruise recently and I had lots of comorbidities.  Only the cruise part was a lie. Still, the eligibility screener from Walgreens website told me I don't need to be tested.  
Additionally, the system asks you your birth date, and THEN asks you if you're over 65.

I'm tired of playing guessing games.  Just test everyone and get it over with.  Tests need to be repeated regularly, or antibody tests need to be done instead.  We get it. I know it's hard for you high ups to realize that some lowly citizens get it, but I assure you we do understand the concept.   We'll repeat test on any reasonable schedule you name, but...  Get on with it. 

Magic Words Medicine

This is what I call "magic words" medicine.  I first experienced it firsthand (not by rumor) when I went to see an Infectious Disease doctor at Duke University.  I know I have "Post Viral Fatigue" (that's the actual medical coded name)  aka Chronic Fatigue Syndrome  aka Myalgic Encephalomyelitis, which is a disease that has many fancy names, but no diagnosis and no treatment.  I'm going to use my ME/CFS experience to explain why this policy of "magic words" is insanity.

It's suspected that ME/CFS is triggered by the body continuing to be alarmed by a virus it has conquered in the past.  Except maybe it didn't conquer it.  And maybe it leads to a depletion in immune function or materials to fight other infections.  People with ME/CFS tend to have lots of infections. I do.

The next part is technical.  If you're a doctor this will make sense to you:  In my case, and probably for the celebrity Cher, I have high IgM but not high IgG for Epstein Barr Virus.  It's ridiculously high, not just "out of range."  But it's 100x the value it should be.  For the layperson, IgG is an antibody that is made first while a body is fighting a pathogen.  IgM is made much later when the body is just maintaining immunity to it, or if you're in contact with it again.

The ID doctor at Duke told me that having an astronomical IgM means nothing.  My GP disagrees and he is right.  I was prescribed Valtrex and it helps.  For the first time in years, I no longer have a low grade fever every... single... day.  I was already taking Celebrex and have been for years, due to Arthritis.

These two drugs (usually Famvir, but they're basically the same chemical when converted by the liver), constitute the Pridgen Protocol for ME/CFS.  I have separate reasons for taking each, but I life in terror of being denied them.  Doctors have already tried to deny me Celebrex, though nothing else works, I've tried at least 8 different prescription NSAIDS, none of which does what Celebrex does.  And nothing has ever stopped my low grade fever except an antiviral.

Maybe I can "fake" that my mental alertness seems better with Valtrex, but it's hard to believe that I'm capable of producing a fever and chills by imagining an illness. If I was that good, then I'd be dead, because this illness makes you wish for death.  While I'm not suicidal, others with this illness are and there are regular suicide announcements and even entire families committing mass suicide. But infectious disease medicine still treats this as if it's mental and nothing to do with ID, with ineffective results and even harm doneScientists have even been jailed for attempting to reveal ineffective tests and treatments. Another scientist is trying to cure his son of ME/CFS. There's no smoke without fire. 

I also asked this ID doctor I won't name, at Duke, in the City of Medicine, Durham, NC, "What about sleeping sickness?"  because that's what it feels like.  In my sense of logic, if it looks like a zebra and acts like a zebra, it probably isn't a stripey horse.  But in the denialist world of Infectious Disease, I would have had to go to the place where Sleeping Sickness is endemic, and have gone to the doctor fast enough with the correct symptoms, to be tested.

I asked, "What if you just test me and we'll let the test decide?  I mean, maybe I've been in contact with someone from there. People don't wear tags saying where they've been in the last two weeks."

And here's what this ID specialist said:  "Even if I tested you, if it came out positive, but you didn't meet the criteria for testing, I'd have to THROW THE TEST OUT AS INVALID. A false positive. I couldn't retest you even to confirm it." 

This is not medicine. It's not even evidence based science.  It's denialism that was designed to keep healthcare costs low by discouraging testing through a convoluted system of eligibility. I'm furious, as anyone in their right mind would be.

They tout  "science based" and "evidence based" and then they cut corners.

This is "Magic Words Medicine."  Say the magic words and we'll treat you.  

Otherwise you're imagining it.  Here's some antidepressants.  Get some exercise and cheer up. The Oracle has spoken.  Magical thinking!  Whistling past a graveyard!

When I heard of the "you don't qualify" news articles like this and this and this, among many others, I tittered ruefully because that's exactly the state of ID today.  And it stinks like zebra shit.

Celiac is not a Risk Factor according to Walgreens

I also noticed that once again autoimmune conditions are not a category for risk factors.  Despite Dr. Fasano saying Celiacs are at higher risk, despite that many inflammatory conditions (heart disease, diabetes) are listed as risk factors, there is no general "I have an autoimmune condition" choice on the list.  Everyone with autoimmune issues is at higher risk.  But I guess old age covers autoimmune and inflammatory conditions.  Except what if you're not over 65?

We need to stop using "old age" as a proxy for "autoimmune" because kids have autoimmune issues too.  I know, because my knees would inflame regularly when I was just 16. I had a permanent pass from the school nurse based on my doctor's advice.  I could put my feet up in class.  I could use icepacks in class.  I did.  We assumed it was because I played sports.  Nobody mentioned Juvenile Arthritis.

Now we have kids dying of Covid-19 due to activation of Kawasaki illness. Notice the weasel talk,which is like, "It seems like this illness, but it's RARE, it may be something else."  Then too are the reports of Covid Toes.  Maybe they stubbed their toes?  Or the very common thing that doctors say "you don't look sick" and the danger of happy hypoxia. This is why we need to rely on tests and science, not subjective assessments.

Watch out, Zebras Crossing!

We have already been told over and over again that this is a novel illness.  Everyone needs to start looking at the symptoms with unbiased eyes. Wake up to the zebras, ID doctors, CDC, and NIH! You can't have it both ways, policy makers.  If we're to stay home like good little citizens which most of us are doing, because of a novel illness, then you have to treat it like a novel illness and stop pretending that weird symptoms aren't real or related.

We should have no requirements for eligibility, other than limiting the frequency of voluntary retesting to a reasonable length of time like 15 days.

Frustration and Gratitude

Despite my long standing frustration with infectious disease denialism, I still respect and support medical workers.  It's not every doctor and nurse's fault that one medical specialty is falling down on the job in an epic way right now.

It's not any healthcare worker's fault that the eligibility testing on Walgreen's site is just as bad as I feared it would be.   It's just maddening to see the country (and world) suffering from a pandemic, knowing for sure that this particular aspect of it is a huge mistake, and being able to do nothing about it.  But blog. At least this much voice, I have.

And with it, I still say, Thank You, medical workers for saving as many of us as you can under really tough conditions.  

I know my frustration is not "special" in any way.  I know that if you speak to others who have had, for example, Lyme, and took years to have it diagnosed, you will see they are frustrated in a similar way.  But I think it's time patients spoke out and shared what nonsense they've experienced.  We're learning how messed up our medical system is.  Let's use this opportunity to speak truth, and fix it.

100% Covid-19 Test Eligibility Now!

Edit 5/2/2020:  Update, now Walgreens is spamming me.  I tried to unsubscribe by sending "unsubscribe" to their postmaster email address (part of their system) and I got "no such email exists" messages back, again with no way to unsubscribe.  So no test but lots of email spam.

Actually it's instructive that I only got one message saying I'm ineligible, though I tried three times to give answers to their screening system.  Perhaps it was not updating my responses. Or I triggered some kind of verification system that invalidated my answers.  In any case, that's hardly helpful in a pandemic where everyone is desperate to get tested. With the entire country asking "When can we leave our homes?" it would be better to blanket the country with testing and replace uncertainty and fear with test results.

Since Walgreens has expressed absolute refusal to check gluten free in any drugs, I can't be their customer.  So getting email from them is useless.  If you find yourself in the same position, this is what seems to work to unsub:    Use the live chat link from there, and ask them to unsub from emails.  It hasn't been 10 days so I can't confirm it worked absolutely.  But at least they finally responded to my request.


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