COVID AS WE KNOW IT AND PREPARED FOR IT

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.

Humidifier - We ordered humidifiers for both of us and those helped as well. 

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 3^rd 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:

• 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. 

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

BBC - https://www.bbc.com/news/health-53061281