From
Brandon and me
Hello everyone. Although
Brandon and I have tested negative for coronavirus through the nasal swab test
we have been diagnosed as “presumed COVID”.
I have never had anything like this.
It is no fun and it is scary as it takes it twists and turns. We are now on day 22. This past weekend was scary. I thought we both were getting better but Brandon’s
oxygen rates went to 88 and his fever came back. I listened to his lungs and I could hear a
ton of sounds which is good and bad. He didn’t
look good. I also was having a hard time
breathing with my oxygen rates holding at 90.
This virus was fighting us.
Luckily, I am on speed dial with Brandon’s integral medicine doctor. She called in Prednisone to break up Brandon’s
lung congestion and we added Mucinex for both of us and we made it through the
weekend. I was so tired and out of
it. I took my car to get gas because we
were going to see Brandon’s doctor on Monday but I couldn’t figure out what
side of the car to insert the gas and apparently, I left there with the gas
door open. Next time I will ask for
help. But today Brandon is fever free
and his lungs sound much better. I am
awake and functioning still sleeping 12 hours a day but I feel much
better. My lungs feel a little heavy. I think that will take a long time to improve
as I am hearing from others who have had this illness. Please I know this is controversial but you don’t
want this – wear a mask, wash your hands, and keep a good distance from
others.
My biggest fear in all of this is that either Brandon or I would
end up in the hospital. The mortality
rate for persons with intellectual disabilities is
16 times higher than for a person without intellectual disabilities. There are some genetic factors as a cause, but
there are also some factors that apply at the hospital. I have always been with Brandon for every hospital
stay he has ever had for many reasons but mainly because he does not and cannot
advocate for himself and his needs like you and I can. He may not be able to breath well, but he
wont tell you, he may be in pain and I mean significant pain, but he wont tell
you, he may have 104 fever but he wont tell you. He will do whatever you ask him to do as
treatment and will not question why. And
I hate to even say this out loud, but there are people who do not value his life
over others. I have lived it, I have
heard it, and I am well aware of it, he is not.
I am there as his best advocate. As
we are hearing about choices hospitals are making on who gets treatment and who
does not, that makes me fearful. Hospitals
are not allowing families to be with their loved ones with IDD. There has been a lawsuit concerning this and
it was won by the family. But it was not
in Texas. Believe me, if Brandon needed
to go to the hospital, I would have brought a copy of the judge’s order. If I had to go to the hospital and leave
Brandon at home, I worried that no one knows the entire medicine routine, the
treatments I was doing with Brandon, the smoothies and mixes I have been doing,
the hugs ad kisses, tucking him in under all his blankets and the fact that he
is still contagious. That is a heavy
load for anyone to take on and I would be worried If I wasn’t here. It is even
hard for me. I
made this chart to help Brandon tell me how he is doing. It has helped.
Today is a long post. If it
helps one person through COVID it would make us happy. This post is not about our COVID story, but
about our COVID survival. I knew Brandon
and I were high risk when I first started hearing about coronavirus. I started reading about this illness, who it
targets and outcomes. It attacks those
older (which I am close to the top risk), but I focused on those with
underlying health risks. This CDC list
was updated June 24, 2020. I added it below.
HIGH RISK
People of any age with the following conditions are at
increased risk of severe illness from COVID-19:
- Chronic kidney disease
- COPD (chronic obstructive pulmonary disease)
- Immunocompromised state (weakened immune system)
from solid organ transplant
- Obesity (body mass index [BMI] of 30 or higher)
- Serious heart conditions, such as heart failure,
coronary artery disease, or cardiomyopathies
- Sickle cell disease
- Type 2 diabetes mellitus
Children (I am adding adults who meet this as well based on 2
other studies) who are medically
complex, who have neurologic, genetic, metabolic conditions, or who have
congenital heart disease are at higher risk for severe illness from COVID-19
than other children.
POSSIBLE HIGH RISK
people with the following conditions might be at an
increased risk for severe illness from COVID-19:
- Asthma (moderate-to-severe)
- Cerebrovascular disease (affects blood vessels and
blood supply to the brain)
- Cystic fibrosis
- Hypertension or high blood pressure
- Immunocompromised state (weakened immune system)
from blood or bone marrow transplant, immune deficiencies, HIV, use of
corticosteroids, or use of other immune weakening medicines
- Neurologic
conditions, such as dementia
- Liver disease
- Pregnancy
- Pulmonary fibrosis (having damaged or scarred lung
tissues)
- Smoking
- Thalassemia (a type of blood disorder)
- Type 1 diabetes mellitus
I already knew lung conditions were at very high risk and diabetes
was a very high risk. I decided it was
time for me to pay attention to my own health as well as Brandon. Brandon had so much to deal with the last few
years I let my own health decline. My
diabetes levels were out of control, my weight too high. This was the perfect time to really work on
losing weight, working on the diet and keeping my blood sugar levels daily at
110 or below. I met with my endocrinologist
and we changed up my medications. I
began exercising, walking, working outside and diet. I lost 15 pounds and my blood sugar levels
are now rarely over 110. For Brandon, I
wanted his lungs to be the best they could be.
We met with his pulmonologist and began using an aerobika
for Brandon to use daily and nebulizer treatments twice a day. The virus also seems to focus on those with
low vitamin D levels and Brandon has struggled with this. But we had already been using supplements and
diet to boost vitamin D. My other
concern was if our immune systems able to fight off a bad virus. I would say no they were not. We met with Brandon’s integral medicine
doctor and she designed a COVID program for her patients. We modified this slightly because Brandon was
already on some supplements included in the list. I decided I needed to start using the immune
boosting supplements as well. I am
including what Brandon and I did to prepare for possibly getting this
virus. I am not a medical doctor so
please take this as what worked for us. Brandon and I chose to go with
supplements before prescription drugs in most instances. Always talk to your
doctor before adding any supplements or medications. Brandon and I began using these supplements
recommended below:
SUPPLEMENTS FOR
PREVENTION:
- ZINC 30 - 50mg (Zinc piconolate or Zinc sulfate) Dose: Take 30
mg (1 tab). Zinc complement
over-activation (inflammation) which may cause lung injury in COVID-19. Zinc
helps the body stop growth of invading viruses.
- QUERCETIN:
typical dosing 250-500mg Daily and compliments Zinc. Take with FAT for
absorption.
- ISOQUERCETIN is the Active form of Quercetin and much stronger so
typical dose is around 35 mg – 75 mg daily. Has a variety of
antiviral properties as well as anti-inflammatory and works well with Zinc.
- EGCG OR BETTER KNOWN AS GREEN TEA: from green tea. Usual dose of 750 mg.
- SAMBUCUS
(Elderberry extract). Great
antiviral studies in influenza and many other types of viruses. Decreases
infectivity of viruses by many means. Stop taking this once you begin
varicid – see below.
- MELATONIN:
May explain why kids are less susceptible. Melatonin levels go down with
age. Taking low dose melatonin if over age 30 may be beneficial for
boosting the immune system. IF sick, HIGHER dose 10-20mg of Extended
Release daily may be beneficial.
- SULFORAPHANE
with Maitake mushrooms for beta
glucans (Avmacol extra strength) for immune boosting. Brandon uses Avmacol
I am using Maitake Mushrooms.
- BETA GLUCANS
can come from yeast or mushrooms. Some people get “spacy” with
mushroom derivatives so can use separate yeast-based beta glucans with
plain sulforaphane (Avmacol) to create the equivalent of above or just use
the beta glucans. Safe immune booster.
- VITAMIN D
is also very important for fighting infections. At the onset of an
illness, take 50,000 IU of vitamin D3/day a week (for 2 months max) if
haven’t been on vitamin D you can take 5000 a day. If you know your
vitamin D level is good stay on usual dose. Brandon was already
taking a high dose. I added regular
vitamin D to my diet. A low vitamin D level is high risk for COVID.
We started the above
immune boosting treatment in early March.
I cant say for sure that this saved us from severe illness but I am sure
it helped.
A little over three
weeks ago Brandon had a melt down at his house, insisting he needed to come to
my house (he lives next door with roommates).
On the drive over he said he may need to head to the hospital. I had no idea what was wrong, but I bought
him back to the house and he headed to bed.
He didn’t get out of bed. I decided
to take his temp and he was running around 100.6 fever. I asked him what were
his symptoms and he said chest congestion, sore scratchy throat and a headache.
Sometimes Brandon can run a fever when
he is stressed and he is stressed right now. The next day I checked him and he said he
still had the same. So far he has had fever for 20 days. We are hoping it is now gone. That day I
started to have a scratchy throat, headache (that doesn’t go away) and it felt
like someone was grabbing my chest up high and holding it. Very tight.
I wasn’t coughing. The next day
Brandon and I started having diarrhea (it was pretty darn bad) for several day. Brandon continued with this, mine got
better. One symptom I am not sure about,
but may be as a result of COVID is the skin rash. I don’t know where we got this, but we were at
MD Anderson at the end of May. A little
over a week later Brandon developed an awful rash on his back. It covered his entire back. It was something I had not seen before on him
although he has rashes, but not this bad.
It is listed as a symptom. I also had a rash later in the illness and
then I had COVID toes. Here is a link to
a description of COVID rashes (COVID
Rash)
In the 22 days we have
been dealing with this, here are our symptoms.
They have not all been at once.
COVID 19 SYMPTOMS
|
||
Symptoms
|
Brandon
|
Leah
|
Fever or chills
|
X
|
Mild
|
Cough
|
some
|
X
|
Shortness of breath or difficulty breathing
|
X
|
X
|
Fatigue
|
X
|
X
|
Muscle or body aches
|
?
|
X
|
Headache
|
X
|
X
|
New loss of taste or smell
|
?
|
X
|
Sore throat
|
X
|
X
|
Congestion or runny nose
|
X
|
X
|
Nausea or vomiting
|
?
|
X
|
Diarrhea
|
X
|
X
|
These less known - COVID Skin issues
|
||
Rash
|
All over back
|
On hands
|
COVID Toes
|
X
|
|
ONCE I REALIZED WE MAY
HAVE COVID – WE STARTED THESE TREATMENT OPTIONS:
- Viracid: I cant tell you how much this saved us. 2 viracid three times a day. Viracid
includes a powerful combination of key nutrients and botanical extracts that
provide immediate support for immune challenges. We are still taking it. Look
for the upper strength for this.
- Astralagus: In viracid. Will not need if taking viracid. If not taking viracid, take at onset of Illness. 250mg two times per day while sick. Decreases fibrosis (Scarring).
- Andrographis: Will not need if taking viracid. If not taking viracid, 2-4 tablet 3 times daily for the first 5 days. Dampens the Chemokine response. They are what cause the excessive tissue damage with coronavirus.
- L-glutamine. 1 scoop two to three times a day. L-Glutamine is one of the most important nutrients for a healthy digestive tract because of its ability to maintain the integrity of the intestinal wall. This amino acid heals all tissue in the body.
- Omega SPMs: (Metagenics) Definitely for use at onset of illness. Can use higher dose of 3-4 tablets two times per day for more severe lung symptoms to stop lung inflammation (contains fish oil and stinky.)
- Vitamin C:
- NAC N-Acetyl Cysteine: 600mg -1200 one or two times per day for cough/congestion. Two times per day for significant infection. Breaks up congestion. Brandon has been taking this for 2 years.
Other
key things for COVID treatment
Pulse
Oximeters
- We
are monitoring with a pulse oximeter several times a day. You should go
ahead and have one handy even if you don’t get this. They are
cheap. This is for Brandon but a guide - Less than 95 call doctor. Less
than 88- 90 for the oxygen level might need to head to the hospital.
Water - Drink a ton of water
to keep the virus from being too dry on the lungs and loosen mucus.
Keep
the lungs elevated
- Everyone is telling us to not lay down too much. Try to walk around or
sit up to keep the lungs from filling up.
And I have been doing chest physical therapy (CPT) on Brandon to loosen mucus.
The
Lungs
- Because Brandon is so medically fragile he also started on Symbicort to keep
his airway open and after a week of running fever he started on Z-Pac for
possible underlying pneumonia. On this last weekend we added Prednisone. All of
this is to keep the lungs open and clear as possible. We both started taking
Mucinex to keep mucus loose. He is down to 2 times a day for albuterol.
Experimental - I haven’t talked
about this but by the first weekend we had the virus I was getting worried for
both of us. Our oxygen levels were
between 90-95. His fever was staying constant
all day and I could tell his lungs were worse.
I was afraid we might be headed to the hospital by the end of the
weekend. I talked to Brandon’s doctor
and she gave us an option of an experimental drug/supplement to take. It has been used in Korea with great
success. I decided to buy it and have it
on hand if I thought we were worse. We
were worse. Brandon took 3 doses first
as he worse. He woke up the next day and
proclaimed he felt fabulous. Wow was
that possible. He was up most of the day
and his fever was gone for a portion of the day. The next couple of days he was almost fever
free, but the 3rd day he started running a fever just at night. I
started taking the experimental treatment the day after Brandon as I was worse. The following day after I started it was the
first time in a week I could take a deep breath. I felt so much better. Still had lung congestion and within a few
days I developed a cough which I considered good. The drug is called Cell Armour which is basically
humic acid. I am telling you this because
Cell Armour may soon come on the market. But also telling you this because I think
this drug may have saved our lives. Brandon
went up to 5 tablets a day in hopes to get the fever under control. I am now off the drug and recovering from
the lung congestion. I sound good but I can
feel the damage this virus has done to my lungs, I get tired and I am still
coughing some. Our goal was to stay out
of the hospital and we so far have done that.
I think this is one of those illnesses that you don’t recover from
quickly. The above series of medicines has
made a major difference for both of us so far.
Lessons
Learned:
LA Times Article - https://www.latimes.com/world-nation/story/2020-05-15/this-small-texas-hospital-is-finding-ways-to-save-covid-19-patients- I knew Brandon has a history on nose swab tests with inaccurate results. I also knew that even the best of swab tests testing for COVID 19 have a 25% false negative rate. Recommended take the COVID 19 test on two different days early in the infection.
- Brandon’s doctor has been great, but I really don’t have a PCP. I have an endocrinologist, but this isn’t a doctor who normally does COVID. Having a solid relationship with a primary care doc is important. Because of this my test came back way too late, and the only advise I received was take aspirin, and if I am gasping for air as I make my way to the toilet, then go to the ER. This is knowing I have diabetes.
- Of course, the obvious I didn’t talk about so far is it is always better to wear a mask, social distance and lots of hand washing. As the weeks went on for this I saw less and less of this and started staying in even more. Although we caught the virus, I still believe this is best approach.
- My best friend right now is the Favor App through HEB. In fact, I would say HEB is the hero in my book for taking on the COVID 19 but trying to keep their own employees and those who shop there safe.
- The latest news is that there will not be a vaccine until early next year. It is only July. We have at least 6 more months of possibly dealing with this virus unless we are able to significantly lower the rate of infection which so far is not working. Based on several conversations with doctors, they stated that most of us are all likely to catch this virus because it is so contagious. I hate being the bummer here. Perhaps we all should be talking about how to get the best outcomes before we get sick as part of the conversation. We have 6 months to be as immune strong as possible. I really don’t hear people talking about this.
- We are now hearing about other treatment options out there. Go with the ones you and your doctor feel most comfortable with. I think the sooner each person, especially those at risk gets some type of treatment once you have symptoms the better the outcome. There will be others I am sure of it. A few articles people sent.
