Marilyn’s Journey

Marilyn’s background pre-Covid

For those that follow Marilyn.  Also for those that do not, but are searching for information.  Please be aware that none of this may apply to anyone else. Some of the info may be controversial.  This is not meant to start a debate at all.  It is for those that simply want this information.

First for those that don’t know her, or follow her.  Marilyn’s CAD sensitivity is extremely high.  Higher than the majority of other CAD’s.

So some history first before we get to the second section about COVID Vaccinations and Antibody Testing.

Years ago, typical blood warming techniques used on most CAD’s, started failing to result her RBC/CBC.   Even though that had worked on her for years.

Eventually labs couldn’t run her RBC/CBC.   Labs like Quest and Labcorp (USA) flat out told her they could no longer test her RBC/CBC.  They refused to do anything that differed from their Standard Protocol, other that attempting to keep the blood sample warm ….. which by this time consistently failed all the time.

For her high cold sensitivity level they have to process her RBC/CBC using a Plasma Replacement Technique.  Most CAD’s never experience this.

Marilyn has always been overly proactive.  If she crosses paths with a doctor that does not allow her to be.  Or won’t give her the time to ask her own questions.  She simply abandons that doctor.

Marilyn always seeks out the highest rated doctors.  As an example. we have driven 6 hours one way for specialized appointments at the closest top rated facilities.  Fortunately she has Health Insurance that allows her these options.

She is considered “Primary CAD”.  The only thing they can point it too, is she tested positive for a past case of Mycoplasma Pneumonia.  Way back prior to when CAD first showed up.   She carried testable antibodies from Mycoplasma Pneumonia when they first identified her as having CAD.

Marilyn has had every blood test, bone marrow tests, and scans done trying to get answers about her CAD.

For her CAD.  RBC/CBC,  Blood Labs have to resort to a specialized technique called “Plasma/Saline Replacement”.  Then the blood has to be processed on a Hematology Analyzer in manual mode.  All processes most labs will not deviate to, even for a specialized case.  She had to seek out a special facility.

Around 2005 she was infected with Parvo B19 Virus.  Which completely shut down her Bone Marrow Retic function for about a week.  That crashed her Red Blood count (Hgb) to critical low levels, in a very short time span.  With no bottoming out in sight …. not without medical intervention.  Basically her Red Blood Cells were dying off, and her body was not making new ones.

There are various other suspects other than Parvo that cause this.  So it is not a long stretch to think Covid may do the same thing.   Only time and Covid data  will prove this one way or the other some future day.

Marilyn’s Hgb crash, landed her in ICU for about 10 days.  She was kept alive via blood transfusions.  Her Retic function was completely non-existent.  Transfusions kept her alive until which time her bone marrow started working again, producing Red Blood Cells.

At the tail end of this first episode, her Hematologist started her on Rituxan.  Which at the time was off label use, experimental for CAD, and required all kinds of jumping through hoops to get it approved by her insurance.  Not to mention how scary the black box label warning was/is on that product.

She is one that never benefited from the whole series of Rituxan infusions that followed.  Her CAD seemed worse after this episode and Rituxan.

Five years later (around 2010) she is again infected and testing positive for Parvo B19.  Which is odd, because this is a virus that once infected, the body should produce life long antibodies to prevent a reinfection.

This second go around took nearly the same exact course as the first episode.  Nearly an immediate crash in Hgb.  To a critically low.  Taken to the emergency room, admitted to ICU.  Blood Transfusions to get her Hgb up to safe levels, additional transfusion to keep her safe until her bone marrow Retic function started back up.  Another 10 day stay in ICU.

She refused Rituxan this second episode.  She hasn’t redone Rituxan since that first Parvo B19 episode either.

Her Hematologist suspected the the previous Rituxan 5 years early may have interfered with Parvo B19 Antibody production?  It could also simply mean her immune system just plain sucks?  So her Hematologist didn’t take anything  for chance.

After the second episode of Parvo B19 her Hematologist had her go on a series of IV infused IVIG.  For those that don’t know.  IVIG is a blood product that is a collection of many donor antibodies.  Antibodies of a wide collection.  Her (her being Marilyn’s Hematologist) theory was she was going to give Marilyn enough donor antibodies, that hopefully Marilyn would pick up Parvo B19 antibodies, as well as other unknown antibodies she may be lacking.  On the assumption that Marilyn has some type of immune function deficiency.

Sometime after those IVIG infusions, Marilyn was antibody tested for Parvo B19 antibodies.  She tested POSITIVE.  So at least for that point in time, her body was carrying antibody protection to Parvo.

Ironically after IVIG treatments I noticed an overall improvement in Marilyn’s health with not getting sick from something every year.  That seems to have extended even to the present.

This Parvo concern in our minds, slowly faded over the years.   Approaching 2 decades now.

At the end of 2020 she found out she has breast cancer.  This just adds more complexity to everything.  Going through major surgery, then on a path of chemo and immune-suppressants that continue still [as of January 2022].

[Note: In January 2022 Marilyn had a Parvo B19 antibody blood test run out of concern this might reoccur during the current Covid era due to her immune system, or chemo.   Also since she has had 3 Pfizer vaccinations as of that date.  Not having a clue what that might do.

Doctors were also concerned her current breast cancer chemo/immune suppressants (2021-2022) did not somehow  negate the Covid antibodies.  Which made her question her Parvo B19 antibodies.

Thankfully this January 2022 test indicated she does have adequate Parvo B19 Antibodies still.

So …. much of the Covid Antibody testing is to first find out if there is a repeat of her immune system issue not making antibodies.   Or the chemo/immune-suppressants have an impact?   This time for Covid.

Monitoring her Covid antibodies does seem to indicate there is a problem, for her personally.  At a minimum it appears her Covid Antibody protection is lasting no where near as long as they should be.  Or what is being indicated as a time frame to the general mass population.  Not even created after her first two vaccinations.

The above summary of her background was provided so those that don’t know her.  Know how actively she is involved in testings and trying to accumulate her own information, and supporting documentation on her own.

Marilyn was one of the CAD trail blazers taking Rituxan nearly 2 decades ago.

Thankfully she has various doctors that are willing to run some test for her that were never suggested.  At times they are surprised what she wants to know.  Even more surprised when a test result, backs up her concern.  Things they never checked.  Things they may never have checked, without her being persistent.

Marilyn – COVID and Vaccinations

First, like many.  Marilyn was super apprehensive and reluctant to take any form the the Covid Vaccinations in the beginning.  But in the back of her mind she realized that her CAD was probably some rare spin-off from having Mycoplasma Pneumonia.   Things seemed somewhat relatable to Covid type of infections.

We have actually had many conversations wondering if there will be a rise in Primary CAD cases.  As a result of getting an active case of COVID and Covid Pneumonia?  Time will tell on that subject.

Marilyn was also concerned how much of a medical crisis she was put in by a very common virus (Parvo B19).  A virus that nearly all adults test positive for, as having had it some point in their life.  A virus that most people never knew they went through.  Mostly a childhood thing that causes mostly mild symptoms, then goes away quickly.

Then looking at Covid  and healthy people getting it.  She feels it could be a worse threat to her?

Myself being at her hospital bedside during both episodes of Parvo, on top of her CAD.  Sleeping in the hospital room in a chair along side her.  Afraid she would not make it to the next day.  Her agreeing to basically take experimental IV meds at the time.  Covid is a definite concern to me as well … especially for her.

The Covid Virus comes along, and seems to be giving large numbers of otherwise healthy people a really hard time.  Causing death in large number of people with health issues and immune issues.

She thought … should she get Covid and it shut down her retic as Parvo did.  What if Retic may never start working again?  She was even told that risk (retic never starting back up)  existed back the two times she had Parvo.  Covid seems to be doing much more serious things.  So there was that in her mind as the motivator to be vaccinated.  Then to follow-up make sure the vaccination was indeed effective on her.

Prior to her taking any vaccination she requested a Covid Antibody Blood Test.  To first see if she had an unknown exposure.  She wanted such a benchmark result that was documented, prior to a Covid vaccinations.  She tested negative.

For those that don’t know this test.  The antibody test differs from an Antigen Test/PCR that checks for an active infection.   The antibody test checks for convalescent type of confirmation.  Either from an active recovered case, or in the case of a vaccination, the antibody protection it is suppose to create.

The Test being used : SARS COVID 2 AB (IGG) SPIKE, SEMI QUANTITATIVE (Blood Test)

I have to stop and indicate this antibody test is controversial, even on the CDC website prior to all of this transpiring.  We have been sent all kinds of reference articles by naysayers of taking this approach.  Oddly they don’t have an alternative for any available test (at this point in time) that would provide any data at all.   But we also read positive articles as well.  Her doctors are on board and using the test.

Some point to T-Cell testing.  Yet they can’t provide an available test name the general public can have done.  Several of our doctors say this is only research speculation at this point…. as it pertains to Covid.

So Marilyn’s doctors are running the available, and affordable, Covid Antibody blood test on both of us.  They are also paying attention to the results and proceeding based on those results.

I also was pre-vaccination tested.  To be a comparison for her.  I am not CAD.   I also tested negative.

We both had Pfizer #1 and #2 at the required intervals (June 2021).   Two weeks later we are at the “Assumed fully protected stage based on blind faith”, per the CDC guidelines.  I say “blind faith”, because without any follow-up testing, how would anyone know anything for sure?  Just assuming they made antibodies?   Or if antibodies did develop, do they actually last as long as the current interval suggest they will?  Again, maybe for a good portion of healthy people.  Whoever those may be.  But what about the people with known immune response issues?  Or unknown issues?

July 12, 2021 about 2 week interval after Pfizer #1 & #2.   Marilyn tests  (NEGATIVE for Antibodies).

I, in contrast, tested positive with a numerical score of 20.0

August 4, 2021 Marilyn took a second antibody test on the chance the two week interval was not long enough to produce antibodies.  She scoring a  (NEGATIVE), a second time.

The assumed difference is Marilyn’s immune response, compared to mine.  Whether that is her natural state right now.  Or because her breast cancer chemo-therapy is impacting this in a negative way?

In hindsight.  Breaking research articles are pointing to Chemo-Therapy, or the immune suppressed.  As being an inhibitor for Covid antibody development.  The CDC is even showing such information, and changing guidance for this group of individuals.

Her doctor tells her to get a 3rd vaccination.  She physically went or called numerous facilities attempting to get a 3rd.  Short of lying or falsifying documents she could not get the 3rd.  In the USA the federal government had not OK’d a 3rd vaccination.  That roadblock persisted in the USA until the Federal Government finally OK’d the 3rd.

On August 15, 2022 the US Federal government OK’d a 3rd vaccination, for the immune compromised and Marilyn had her 3rd Pfizer that date.  They took her as a walk in.

September 22. 2021.  About 1 month after her 3rd Pfizer, Marilyn has her antibodies retested again.  She antibody tests POSITIVE but only a 2.21  (Compared to my 20.0).

December 21, 2021.  About 3 months after Pfizer #3.  Marilyn antibody tests again and scores a NEGATIVE.  Indicating what little level of antibodies she once created were now depleted.   (This time her doctor gives her a written letter to go get a 4th vaccination.

The CDC website has information at this time, we read immune compromised people can get a 4th.  But it is a very muddied explanation.

She attempts to make an appointment with numerous facilities again.  Even bumping it up to the next managerial level.  Including the State of Nevada Health District in our area.  Again denied by all, saying people can’t get a 4th.

1/7/2022 Friday.  Marilyn then contacts the CDC directly.  Gets a phone interview by a CDC nurse.  They tell Marilyn they are filing a formal complaint.  The CDC takes her list of facilities she contacted, and contact names.   This is nearly 3 weeks of messing around, knowing she is probably the same as, not being vaccinated.  At least no testable confirmation she has any protection to COVID.

1/11/22 Tuesday, our Nevada State Health Dept contacts Marilyn and says she can take her 4th Pfizer.  They will call the facility she has records at and make sure they are on board.  They schedule her appointment for 1/15/2022.

For those that are wondering or may ask.   The CDC told Marilyn #1,2,3, & 4 Pfizer is all the same formula and dosage.   Some of the other brands may differ?

The fact that some may call #3 a booster, or #4 a booster (at this time 1/15/2022), means nothing.  At least with Pfizer, there is no difference in dose, no new ingredients.

As some incorrectly assume, Omicron has not been added….that is not the case.  Or what is referred to as a “booster”, differs in formula.  That is not true as of this date.  Again this was only verified concerning Pfizer since they recommend taking what previous jabs were.  That is what Marilyn had #1 through #3, and is getting a 4th of.

1/15/2022 Friday, Marilyn was given her 4th dose of Pfizer.

Side effects after the 4th dose were minimal.  Marilyn had the typical sore arm that was there when she woke up the following morning.  She had 2 days with a sore arm.  Then it was gone.  She checked her temperature several times and did not experience any type of fever.

2/17/2022   Antibody Test Results back from blood draw done 2/15/2022
Quest Labs/USA  SARS COV 2 AB (IGG) Spike, Semi QN
She tests positive as we were hoping.
Reference Range <1.00 Index    She was 6.57 High

This was good news.  Highest response for her.

What we were hoping for.  What her Breast Cancer Oncologist was expecting.  Since her 4th Pfizer and this antibody test were both done after she has been off Breast Cancer Chemo (Taxol), for some time now.   Her last IV treatment with Taxol was completed May 2021.

Her doctor was operating on the assumption that previous vaccinations during her chemo, and for some period after.  Were causing her immune system to not make antibodies.  Then for a period there wasn’t going to be an adequate immune response.  Plus if there was a mild response, those antibodies would not last as long as the current projections for the masses.

So far things seem to be following that logic.

We will update this with any follow-up Antibody Test results.  She intends to retest a couple more months out.