My Long-Covid Experience
Chronic Illness is not the End of the World, It's the Beginning of Something New
Hope is the beginning of healing and Leaving Death in the Dust was created to help beautiful human beings, who are sick, tired, and metabolically bankrupt, become more actively involved in their own health care.
My Viral Timeline
My pre-covid history with other viral problems
May of 2005: Kids brought home a note from daycare saying that fifth disease was going around. My kids got it and got better, I got it and got worse. I was in good health and in my early 30s.
What started as a typical viral illness turned into horrible low back pain and sharp pain in my wrists and knees and then bone crushing fatigue, facial swelling, GI disturbances, burning sensations in my skin and a rash on my back followed. I saw a GP and was referred to Rheumatology due to a positive Rheumatoid Factor screening test for autoimmune disease. Anti-inflammatory medications were prescribed but brought little relief and additional testing for specific autoimmune diseases were negative. The rheumatologist I saw didn’t speak much and offered no explanation as to what might be going on in my body. It was through my own research that I learned human parvovirus B19 can mimic Lupus. Oddly enough, my serological test results for parvovirus were negative. I saw an internal medicine doc who ordered a test for Lyme (which was negative) and referred me to a GI doc to see if a family history of IBD was showing up in me, but it wasn’t. Results from those visits showed a healthy colon, no IBD or celiac, and my symptoms were put in the IBS basket. I was also prescribed something to take for reflux, which I did not have, UGH! The dermatologist I saw was not interested in connecting the burning sensations in my skin and rash to my other symptoms or viral infection. He was convinced I had histamine running amok and nearly put me into a coma with the potent antihistamine he prescribed which did nothing for my burning skin sensations or rash. Looking back, I don’t know how I got through those long months (which turned into years) of barely being able to drag myself out of bed to go to work and care for my 3 little boys. Along the way I kept searching the web for answers and ended up finding the book From Fatigued to Fantastic, by Dr. Teitelbaum who connected all of the post-viral fatigue dots for me. I started doing the things he recommended, and I began a gut healing and nourishing diet which brought my 2-year struggle with post-viral fatigue to an end (mostly). I did keep experiencing occasional dips in my energy levels after that, but nothing like before.
Winter 2016-2017: A bought with “the flu” brought on days of severe/excruciating lower back pain and pain in my colon. I could barely get out of bed or stand up straight. I found the SCD/GAPS diet which has been used successfully by people with IBD, went on SCD for about 9 months, and was able to heal my gut and its pain.
The Covids
July of 2020: 1st Infection with Coronavirus, Alpha variant- Conjunctivitis with cheek bone pain and a funny feeling in my face that got worse at night and kept me from sleeping. Strange blurry vision. Fall of 2020: a lingering chronic bronchitis and cough.
August of 2021: Mild initial infection, Delta variant with no fever and GI upset. Lingering mild fatigue and GI upset, hair loss and hair damage, severe lingering rhinitis, chest pains, insomnia, headache, ringing in ears, shortness of breath, hot flushes with normal body temperature, and it put me into complete menopause.
January and April of 2022: Reinfection. Temperature dysregulation with hot flushes, no fever, and low body temperature, severe muscle aches, headache, mast cell activation issues (high histamine), odd rashes, burning feeling in skin, severe chronic fatigue, post-exertional malaise, joint pain, low back pain, pain when sitting, hives and weird lumps with deep tissue swelling especially if any pressure was applied to my body, lingering muscle aches/weakness, mild numbness and tingling sensations, insomnia, burning mouth syndrome, lip swelling, inflamed gums, swollen vocal cords with wheezing, rib pain (costochondritis), shortness of breath, anosmia (loss of taste and smell), GI upset, restless legs, ear ringing and buzzing feeling in face & head, chest pain, bone pain, brain fog, blurry vision, interstitial cystitis, rhinitis with copious thick rubbery discharge down back of throat, asthma wheezing and increased usage of rescue inhaler.
Most of my symptoms really started to improve at 4 months after each initial active infection and my severe chronic fatigue healed at 6 months after my infection in April of 2022 which was in October of 2022. The life of a mast cell is around 4 months, maybe that has something to do with the improvement of symptoms?
We lost both of our pets during this time, one in 2021 and the other in the spring of 2022 after which many of my histamine and asthma related symptoms started to improve. Animal dander has been one of my biggest triggers from childhood, especially dog, cat, and horse. However, the big flares I have experienced, have really been few and far between. I love horses and have fond memories of watching them in a neighboring field with my grandfather. The second time I rode a horse, I experienced a severe asthma attack and had to stop riding, it was also cold outside and that may have had something to do with it as well. But as you can see in the previous picture, when my son got his first wild Mustang, I got back up on that horse and rode with a little help from Zyrtec. This was about 1 year before post covid related high histamine symptoms began in the Spring of 2022. As difficult as the death of my pets was, having their dander exposure removed at that time was actually a bitter-sweet blessing. Sort of like the bitter baking chocolate my mom used to keep in her cupboard that she turned into something sweet and delicious. It was sad to lose my animal friends (bitter), but it also kept my histamine cup from running over and helped my body to begin healing (sweet).
Dr. Tina Peers has some good videos on long-covid, hypersensitivities, and healing; you can check them out below. In them it was mentioned that most patients with long-covid seem to be more sensitive to environmental triggers that are around us.
Detoxing from the spike protein and the role of MCAS - Dr Tina Peers
Restoring health following chronic illness, with Dr Sarah Myhill
Dr. Gupta has excellent resources/protocols for Mast Cell Activation and POTs.
Yes, long-covid has aged me, but I’m over 50 now and aging anyway, that’s natural. I have more gray hairs than I did before and my skin has aged a lot as well, but I have heard that aging, and gray hair, is associated with snowcapped mountains, something sacred, a place where pilgrims often go to find something. #LadyWisdom
*Update 2024- supplementation has brought my skin and hair back to life! My skin and hair are not as dry and there is less grey in my hair color.
A pilgrimage is a long walk that becomes a tough hike up a steep mountain. It’s not easy, but what you find at the top of that mountain makes it worth it. It’s about the journey and the destination and who you meet along the way and ___________.
Safely arriving at my intended destination has included struggling and suffering, but joy is here too. Keep shining light in those dark places. I am not my list of symptoms, and my symptoms do not limit my possibilities. Get up and keep walking my friends.
*UPDATE 2023: January (new variant, new infection), July (new variant, new infection) and August (reinfection). Most of my symptoms after this round of covid in July were neurological, the fatigue was terrible as usual, and the mental/emotional funk was extra horrific.
My body has paid a health price for traveling, but I have also managed to gain some insight into Long Covid Dysautonomia due to a visit with my mom’s chiropractor who has some extra training in neurological health conditions. This has pointed me down the path of seeking acupuncture and traditional Chinese medicine for treatment (primarily because the same kind of chiropractic care that my mom’s chiro offers is not available where I live). I am very thankful for the care Dr. Wilson gave me while I was home visiting my family which made it possible for me to be able to travel back home again (to where I currently live) after a very painful flare up of my lower back happened. There are some good articles backing up the success of acupuncture in treating dysautonomia and long covid so I am confident it will be helpful. As I write this, I have already had 4 treatments, and I am already seeing improvements in my condition. I am also thankful for the care that Dr. Ly has given me, and I have learned that acupuncture can also be helpful for cancer patients.
From- The Mediterranean Lifestyle - by Stephanie Schaible (substack.com)
As some of you know, I have been receiving acupuncture treatments for Long Covid. I caught Covid again in July (only 6 months after having it again in January of 2023), traveled by plane to visit family in mid-August and caught Covid again either in the airport or on the airplane during the return trip. My oldest son who was also traveling with me caught it as well. I told mom that it sucked to feel crummy for our visit, but in a Pollyanna moment, I recognized the role that unfortunate Covid event played in leading me down the acupuncture treatment path.
Acupuncture for the Win! - by Stephanie Schaible, MT (ASCP)
Of all the things I’ve done to recover from Long-Covid, I would have to say that acupuncture was by far the best thing I have done up to this point. I am incredibly thankful to Dr. Ly for his help in my covid post viral recovery. I have documented my acupuncture treatments in detail here-
Acupuncture for the Win! - by Stephanie Schaible, MT (ASCP)
*Update- December 2023 - During my appointment, in August, with mom’s chiropractor, Dr. Wilson, who practices applied kinesiology, it was discussed that “parasites” may have something to do with my health problems, but he did not want me to address this until I was doing better. Interestingly, during the fall of 2023 a family friend who was sick and unable to get help or answers from our local health care system shared that her problem had been identified and successfully treated by an alternative practitioner of a natural medicine variety who identified a parasitic infection (most likely picked up during a trip to South America). I scheduled an appointment with this provider and Bioenergy/biofeedback testing revealed that my Long-Covid problems are most likely due to an undiagnosed, underlying, chronic, tick bite associated infection which is definitely in the “parasitic” category as far as I’m concerned. A treatment plan specific to me and the problems identified in my biofeedback test results was set up which included- herbs known to target the bacteria associated with Lyme, supplements to address the nutritional deficiencies that are common in Lyme patients, homeopathic remedies to keep my detox pathways open and to relieve my joint pain, and a probiotic beverage suited for my specific GI and vitamin K needs. I have written more about that here-
Co-Infections and a Good Report.
*Update- 2024 -
Late Winter-Spring, flare up in symptoms (fatigue, GI, brain fog) that began in February and persisted. Not sure what brought it on, may have been due to supplementation with Lyme herbs that resulted in detox symptoms.
Mild Covid (new variant, new infection) in June with bone pain and flare up of (Lyme) neurological symptoms, did not fall back into full blown long-covid hell and post-viral fatigue syndrome. I got on an airplane in August and managed to travel without getting Covid or any other kind of viral infection!
I had a consultation with a local Physician’s Assistant who practices at a wellness clinic that takes a functional medicine approach to things like long-covid and cellular/metabolic health. I am happy to report that the things recommended resulted in a Covid free journey for me! About 2 weeks before my flight, I received a “post-viral” IV package that included things like NAD and Glutathione. I also began taking a liposomal phospholipid supplement (Phosphatidylcholine) to help the nutrients I am consuming get into my cells better, as well as some butyrate for my gut health, and I began Ozone treatment since it is suspected that the reason I have struggled with Covid may be due to an underlying chronic Lyme co-infection which probably includes bartonella…….
Joy Ride - by Stephanie Schaible, MT (ASCP)
At the end of September, I caught some kind of upper respiratory crud that was not Covid. This is the first time in 5 years that I’ve had something viral that wasn’t Covid, it felt like a typical “cold bug” when it came on. I most likely picked this up when I went for a blood draw to have my vitamin D checked. Unfortunately, this bug came with copious amounts of mucous that lingered with a cough for about 6 weeks, and it did set off some viral Lyme associated neurological symptoms. But I hit the interwebs, learned some more things about homeopathy, and added several items to my home homeopathic apothecary that helped calm the viral flaring of my Lyme symptoms. My Vitamin D has been low since 2021 and I’ve raised it 30 points, but I would like to raise it 20 more because low vitamin D blood levels are associated with impaired immune function.
During the fall of 2024, I bought a small PEMF device and began using it. We may need to pick up another device since my husband has found it useful for his tendinitis. We are also currently looking into grounding devices and reducing the Wi-Fi and cell phone radiation that we are being exposed to in our home which I will most likely be writing about in 2025.
Shortly after Thanksgiving, my husband came down with something flu like (not Covid) with a cough and chest congestion that lingered for several weeks. At the beginning of December, and only a couple of weeks after recovering from what I had caught in September, I came down with what he had. The minute I felt the sinus drainage start and the tickle in my throat, I hit this V-word with Anaferon, Elderberry, Pomegranate, Lemon, NAC, and Aconitum napellus 200c. By day 9, I was back on my feet and none of my Lyme symptoms flared up. I also recovered sooner and had milder symptoms than my husband and our oldest son did.
Praise God from Whom all blessings flow………………………….
Best Wishes,
My name is Stephanie, I can do hard things, and Leaving Death in the Dust was created in sickness and in hope for healthy healing. ******Remember to make prayer a first priority.
*Leaving Death in the Dust is a newsletter and is not a replacement for professional, regulated, medical, healthcare. This is informational and educational. Some of us in this community may have worked in the healthcare system, but we are not your medical provider and whatever you find here is not the establishment of a professional medical relationship or medical advice. **That is an MT behind my name not an MD.
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