CLL Alternatives

CLL and Covid 19: A Personal Story

Posted by: Denise on: March 12, 2021

After posting all kinds of pretty valid, but ultimately useless advice on how to prevent Covid 19, I caught it. Here is, briefly I hope, my Covid-19 timeline.

October 23, 2020:

My husband left work early with cold symptoms. It is a family business and our son is the general manager, and told my husband that not only did he need to go home (as would any employee) but that he had to get tested. So he did, with the 15-minute test. It turned out he tested positive, and by that evening he ran a 103-degree fever. Our two sons wanted me to go to our cottage (45 minutes away) and quarantine there without my husband. At the time, so suddenly, he was bedridden and too ill to look after himself. I couldn’t leave him. So I very carefully started our homebound isolation. He was already in the guest room, as soon as he came home with the positive diagnosis. I moved all his bathroom items into a separate bathroom as well, aired out the remainder of the house and wiped everything down with Clorox wipes. Initially, he only ate what I brought to his room onto a TV table I’d brought up from the basement. Once he could leave bed, we both wore masks and never stayed in the same room. I would air and wipe down any room he’d been in, which included only the kitchen or the home office. It was difficult, tedious and lonely, but I persisted.

October 30 – November 13, 2020

Eight days later, I figured I was going to beat this and not catch the virus. Ha! On the ninth day, I started to have symptoms of an upper respiratory illness. But I was okay, and kept working remotely with my laptop in the family room (the office was taken up by hubby). I did develop a cough, but it wasn’t anything to write home about. Then came the loss of taste and smell, along with loss also of appetite. It’s hard to eat when food has only texture. I forced myself to eat at least a little bit. I was diagnosed November 1. By the following weekend, I’d been advised to sleep on my stomach to avoid pneumonia. It was either this sleep position, or the cough, that created a horrific back ache. By November 9, I called my husband (who was now back at work, totally recovered) to come home as it was hard for me to function as I was terrified to cough for fear of the pain that shot through my body like jolts, with each cough. He came home and insisted we go to the hospital. We went. After a chest x-ray and a quick examination, I was given a 600mg Motrin and sent home.

I spent the next five days living on Motrin, taking as much as I could, according to the bottle (6/day, max) My body stopped coughing. I would feel the urge, but my body stopped the impulse. It was not intentional, but a response to the pain reflex. I took my temperature and oxygen reading several times a day. I’d not yet spiked any fever, but my oxygen level was slowly dropping.

November 14, 2020

By Saturday evening, the 14th of November, when my husband came home from work, my oxygen level was 77. Time to go to the hospital again. This time, they admitted me. The weird thing is that I almost immediately spiked a fever, right in the ER. I know it was in the 100s, but I was too spaced out to recollect for certain. They left me lying on the exam table for hours, as I waited for an available room. I was in terrible pain from my back, making it very hard to lay on the exam table, but the staff was more concerned about the Covid, understandably, and pretty much ignored my pain. Later that night, I was escorted up to my room where I would be oxygenated and poked till the following Friday when, thank you God, I was released.

My hospital stay was difficult. No visitors allowed, which while understandable, made it hard for both me and my husband. I did keep my cellphone charged, but I could speak for two to three minutes before I would get exhausted from the effort. I could also text, but that, too, was a challenge. TV was boring, which was a good thing, as it meant to me that I wasn’t doing that bad, or I’d just be sleeping. There was no special treatment available, as (in my opinion) all emphasis has been on vaccinating. There was no hydrochloroquine, no ivermectin, no regeneron, no convalenscent antibodies (several friends who’d had Covid volunteered, but it didn’t work that way). All that was available was steroids. Thankfully, the famous (or infamous) ventilators were no longer used as quickly as they were a year ago. They did give me an immunoglobulin infusion, and that apparently helped. As I had the infusion on a Wednesday, and was released the following Friday afternoon.

It took about two weeks till I was functioning normally. It was hard for me to walk, not only from the pain (diagnosed in the hospital via my husband’s remote pleading) as a fracture of my L4 vertebrae (low in the small of the back). Now it is March 11 as I write this, and I’m (finally!) 99% better. I will give bullet points so as not to bore you with an even longer story.

What I did to prevent getting Covid

What I did to treat Covid

               At home: two different antibiotics, Motrin, nebulized hydrogen peroxide (food grade), nebulized cortisone, supplements: beta glucan/lysine, zinc, quercetin, plus all the others I normally take.

               In hospital: steroids via IV, eventually immunoglobulin via IV, and for pain: pain patches every 12 hours, and Tylenol.

Medical Issues since hospital discharge:

  • Horrific Acid Reflux. This was so bad I walked the neighborhood at night to try and recover. This was part of the steroid withdrawal, and lasted just one night. Thankfully!
  • Palpitations and swollen ankles, weight loss. Fearing I was experiencing a new heart condition brought on by Covid, I saw a cardiologist who assured me my heart was fine. Blood tests revealed signs of hyperthyroidism. A visit to an endocrinologist a month later indicated this was a temporary condition brought on by either the steroid use or the Covid itself.
  • Back ache persisted. At first, so debilitated from Covid and hospital stay, I had a home visiting nurse and physical therapist. Now I’m nearing the end of my second round of physical therapy, this time in the same building as my orthopedic doctor.

My conclusion:

  1. All the things I do to keep myself healthy for CLL helped me survive my Covid ordeal (although it didn’t seem so when I was in the middle of it, especially while hospitalized.)
  2. I believe I worsened in the hospital because I was not allowed to take all my immune-enhancing supplements.
  3. I was tested and do have the antibodies for Covid.
  4. It is my choice, at this time, to let others who are more eager than I to get the coronavirus vaccine, in any form. I don’t agree that natural antibodies are any less viable than those created by a new vaccine, so I will go with Mother Nature at this time.
  5. Should I go with a vaccine in the future, I haven’t researched thoroughly, but my inclination would be, given a choice, to have the Johnson and Johnson, as it is less experimental. But again, I prefer to wait until I see data about this.

I’m not certain what I can suggest. This was my experience, and if it helps you, or gives you hope that you can survive should you get the infection, that’s a good thing. It’s not good to live in fear. I wish you life. I wish you good health and hoping we can all get back to normal sometime this year.

– Denise

6 Responses to "CLL and Covid 19: A Personal Story"

Hi Denise:
Great to find this site! I’ve had CLL since 2006. Also, tried and did everything until 2019. I do believe diet and lifestyle contributed to my long remission.
Then AIHA and other abnormal cytogenetics. I am extremely knowledgeable about CLL, alternative treatments and allopathic treatments available for the various types of CLL. Currently, I am dealing with low neutrophils that are not autoimmune. I looked through labs from the previous 15 years and it looks as though I have had episodes of low neutrophils since diagnosis. I have a very colorful story, but my question to you is: have you seen most of us with CLL also have low neutrophils? Looking forward to your response. Geri

Hi Geri,
I’m glad you found this site, too! To answer your question, from what I’ve observed, we’re all different, which makes it frustrating for both allopathic and alternative treatment. I have come across many with CLL who have trouble with neutrophils, myself included. Neutropenia (lack of neutrophils) is a serious problem and potentially fatal. I’ve come across two over-the-counter items that absolutely help with neutrophils. One is your choice of two products that contact rice bran arabinaca (sp?). This is an immune modulator, and not marketed as a neutrophil enhancer. It does claim to “increase the activity of NK (natural killer) cells.” It works for me!
The products are:
Peak Immune by Daiwa
NK Cell Activator by Life Extension
Dose: as directed on the bottle works for me.

The second item/s are mushroom powder. I prefer OM brand as it’s organic, but there may be other brands. I used to put it in my smoothie, but now that I’ve discontinued smoothies I put it atop my breakfast and lunch almost every day. I am generous and put in more than a scoop. It tastes good! I buy a variety: shitake, maitake, lion’s mane, cordyceps (there are more). I mix it up. you can look up their health benefits on (I avoid G–gle, as it is anti-natural health these days.) And in the interest of being a good Internet citizen, I will remind you that I’m not a doctor, but a CLL veteran who has been observing her own recovery/maintenance of stable CLL, and conversing with others with CLL, and learning a lot. There is no one-size-fits-all. If only! But I would try these two food items and see what your blood test results are at your next doctor visit.
Glad to meet you! Truly glad you checked in.
All best, Denise

Hi Denise,

Good to see your back and doing well.

Check this out —

Best, Chip

Thanks for writing, Chip. It’s great to be back! And thank you for your link. I think it’s important to do our research and make informed decisions about everything having to do with our health.
All best, Denise

Hi Denise,
In all I am so happy you recovered although your experience was not pleasant. It is hard to say for sure what could happen if one catches this thing but a healthy lifestyle is extremely important. You always inspire me.

Thank you for sharing and I also, when the time comes, will go for the J&J. Stay well and glad both you and your husband are well.

To Healthy living,

Hi Nathalie,
So good to hear from you, and thank you for your support, as always. I’m keeping my eyes open (and ear to the ground) about all the reactions (and non-reactions) to all the vaccines, and especially the J&J. I like that it’s DNA-based, like a classic vaccine. Also that it requires refrigeration only and not a deep freeze. And one shot and done is also a bonus. I would hope that getting antibodies tested on a regular basis would be enough, once you’ve had a documented case, but that doesn’t seem to be the official way right now.
Wishing you and yours the best, Denise

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