I have been writing a series of posts about my grown daughter, Michaela, and her path back to health from COVID and then from Long COVID, which started with the first blog post here. It has now been 20 months since the initial acute COVID infection, and the last 6 months have been better than any Michaela has had since being diagnosed with COVID.
Since my last blog post on the topic in the beginning of January 2023, Michaela has tried only one new modality, Neurofeedback. Sadly, it turned out to be too much for her body and nervous system. While my experience with Neurotherapy was wonderful (which I wrote about here), we learned from the results of Michaela’s QEEG (Quantitative Electroencephalography) that she had experienced some type of brain injury in her early childhood. This injury could have occurred at birth, when the doctor used a “suction method” to guide her through the birth canal, or one of the several times that she fell down the stairs of a 100 year old home in which we lived when she was a toddler.
The QEEG isn’t capable of providing the date of the injury, but the results of the test were consistent with someone who had experienced a traumatic brain injury many decades previously. The reason why that was important to know is that Michaela’s brain isn’t communicating optimally from one side to the other, which creates energy discrepancies, and makes Neurotherapy more challenging, requiring the sessions to go much more slowly.
The previous brain injury was also likely to blame for her grand mal seizures after she experienced severe dehydration back in 2017, which I wrote about here. So the culmination of a childhood brain injury, plus two grand mal seizures created a weak link for COVID to attack. (I wrote about COVID and a body’s weak spot here.)
For Michaela, that weak spot was her brain, and her brain fog and vision issues were the symptoms from COVID inflammation in her brain. We were hopeful that Neurofeedback would be able to quell that inflammation and to help her heal. Instead, it activated her nervous system to the point that she couldn’t tolerate doing the therapy. She wasn’t able to sleep for a week, and even deep breathing put her body into a fight/flight feeling that was untenable. She stopped the Neurofeedback, for now, and decided to continue to practice Zhineng Qigong as her sole means of getting better from Long COVID.
She has been able to practice various routines up to 5 hours a day, and has continued to see improvement. She’s able to ride in a car now without vision issues and nausea. She’s also able to work about 5 hours a day on the computer, which is a very big deal from where she began. She no longer has the feeling of burning organs, and her hives have lessened dramatically. She has more energy than she has had for the last year, and is able to follow conversations and engage in them! In other words, big improvements.
Michaela (laughing despite all she has been through), Me and Morgan
Michaela was interviewed by the Denver Post about her Long COVID experience. The article can be accessed here. (If you hit a pay wall, you can load the Denver Post app and access the free article through that.)
We continue to hope for an article that can provide more treatments for patients than just a litany of research, but Michaela wanted to share what works for her to help others.
My grown daughter, Michaela, has been experiencing long haul COVID after being infected with the virus in November 2021. (You can read a series of blog posts about this journey starting with the first post here.)
I have heard from many readers, which is wonderful! You have asked how Michaela is doing and have also shared that her journey with Long COVID has given you hope. She has learned more about what helps her feel better, and what is too much for her to tolerate. The items that she can tolerate continue to change as she continues to heal.
In the process of searching for healing of her symptoms, she tried many modalities, and found that Zhineng Qigong was gentle enough to not throw her nervous system into overload, and also powerful enough to really assist her healing. She continues to expand her daily 3-hour routine into new practices, slowly introducing new movements and watching how her body responds.
The Eden Energy practices that she tried didn’t provide consistent healing, and she decided to remove those from her daily protocol. The Medical Qigong was helpful to read about in books and to utilize sparingly. It was too strong for Michaela’s sensitive body systems to practice daily. She has learned a lot about Medical Qigong from a series of books about Chinese Energetic Medicine.
She had experienced more healing since my last blog post in July 2022 detailing her path to health, and we were very encouraged she was on the road to a full recovery. Sadly, everything took a turn for the worse in the fall.
In October 2022, the garbage disposal in her apartment backed up and a maintenance rep from the management company was sent to fix it. This began a series of issues of strange smells inside her apartment, the discovery of a sewer pipe that had an incorrect piece in the pipe, a water leak, and to top it all off, the entire apartment building lost heat for 1 week when the boiler went out during a hard freeze. All of these items were very stressful on her nervous system, but more than that, she began experiencing more and more brain fog, fatigue and general malaise.
So many Long COVID patients experience a recurrence of symptoms, that we chalked up her symptoms to another round of Long COVID exacerbated by the stress of trying to manage multiple maintenance people inside her apartment trying to fix problems.
Michaela looked under her kitchen sink in November and discovered mold building up on a cabinet board. She hadn’t looked under there previously, so didn’t know how long it had been present. She taped plastic around the cabinet area to attempt to keep the small area of mold that she could see from permeating her living area.
She has a diagnosed severe IgE allergy to mold, and has had reactions before ranging from repeated rounds of bronchitis (as a child, the school she attended had a water leak that ended up with a moldy classroom underneath the one she was in) to lung and breathing issues (when a previous rental she was in didn’t mitigate mold in a bathroom properly).
When the management company was ready to mitigate the mold, it was mid-December, and they sent Michaela to a hotel. Within a few hours, she realized how her lungs felt so much better. She was able to take big breaths for the first time in months. The management company was going to fix the pipe that had been improperly fixed previously and replace the cabinet that contained the mold spot, but wasn’t going to fix the floor that had rippled from the water that was caught underneath it. This meant that they weren’t even looking for mold that was possibly present in the floor boards.
After these fixes were complete, Michaela asked that an air sample be taken by a professional mold mitigation company to ensure that all the mold had been removed prior to her moving back in. The air sample came back with mold still being present, which wasn’t a surprise to any of us. By that time, she was realizing how many of her clothes and other personal effects that she had brought to the hotel were also covered in mold spores. She put on certain clothes and found that her eyes began to itch. The more information she got from the mold mitigation company, the more she realized that everything in her apartment was going to have to be mitigated to get rid of the mold, and many items like her mattress and couch would have to be tossed because there wasn’t any way to remove the mold.
The management company hired a mold mitigation company to come in to wipe down all the walls and surfaces. Sadly, the process began by spraying chemicals everywhere first! Thankfully, they continued to pay for Michaela to stay in the hotel, but it was becoming more and more clear that what they were doing was going to make her studio apartment unlivable for her sensitive body. Between the chemicals and the lack of removing the floor boards and flooring, her apartment was never going to be mold free.
In fact, we began to wonder how long mold had been present without her realizing it. The symptoms of mold exposure and those of long COVID are very similar. Brain fog and fatigue are vague symptoms that could be sourced from either or both. The key was to get her into a safe living situation to calm down her nervous system and get her back to at least where she was prior to the mold exposure!
The lease that Michaela signed when she moved into her apartment basically excludes remuneration for mold damaging items. They expect that the renter will have that in their renter insurance policy (Michaela didn’t purchase an addendum to include that, not knowing that such would be an issue, so she will receive no compensation for her personal items that have to be tossed – 50 plants, all her shoes, mattress, couch, cushions, pillows, etc). She was allowed to break her lease without a fee, which she has done.
A few days before Christmas, we moved Michaela from Denver to Colorado Springs to live with my husband and me. It’s been 3 weeks since she was in her apartment, and we can see her spirit coming back. She no longer has the fatigue and brain fog, and is looking forward to finding a new safe place to live with no mold.
Just washing her clothes ended up not being enough to remove the mold from some of the fabrics, so we will be taking all her clothes to a commercial laundry facility that uses an ozonator to remove mold. We hope to be able to preserve at least some of her clothes so that she doesn’t have to start from scratch setting up a wardrobe.
The year 2022 was an extremely difficult one for Michaela and for our family. Long COVID is like nothing I’ve ever seen, and she still has improvements to make to be able to get back to working full time, being on screens and being able to drive. The financial setback from the mold exposure was not only in losing most of her personal property, but also her inability to work. We are all looking forward to a more prosperous 2023!
There’s recently been recognition in the “forward thinking” Mast Cell Activation Syndrome (MCAS) doctors that mast cells have some type of communication with the nervous system. And this communication also seems to be occurring for long haul COVID patients. This communication appears to create the symptoms of anxiety, gastrointestinal issues and itchy skin, and may create other symptoms also.
As a patient with an MCAS diagnosis, and as a mother of a patient with a long haul COVID diagnosis, I can say that the nervous system is DEFINITELY affected by both of these conditions.
The autonomic nervous system is a complicated mechanism, and I’m certainly no expert. What I understand is that there is a sympathetic nervous system, which activates our bodies into fight or flight. This saved us from being eaten by a tiger many thousands of years ago, and is certainly necessary, but we don’t want it working all the time. Then there is the parasympathetic nervous system, which activates our bodies to rest and digest. We want a balance between these two systems.
My experience with MCAS is that the parasympathetic nervous system is no longer activated the way it should be, and my sympathetic nervous system is constantly overstimulated. Everything my nervous system comes in contact with is perceived to be a tiger – pollens, food, smells, etc. And my parasympathetic nervous system gets drowned out by all this overamping so that I have trouble digesting foods and getting a good night’s sleep.
In the short run, this isn’t a bad thing to have the sympathetic nervous system working hard. When we all lived with the danger of a tiger eating us, we wanted our nervous system to be highly responsive, to get us moving. Now, an argument with a family member shouldn’t stimulate the same response. Yet, when your nervous system can’t distinguish the immediate danger of a tiger from a kitten, the entire nervous system goes out of balance. And that is bad news for your body, especially when this imbalance lasts for days, months or years.
Mast cells are part of our body’s protection against viruses and bacteria, and are also stimulated during an allergic reaction to release many chemicals. From what I’ve been told, mast cells are in the layers of the gut and skin very close to the nerves, so it’s not surprising that there would be communication between mast cells and the nervous system. There’s been interesting research on the Significance of Conversation between Mast Cells and Nerves.
While there is very little research currently on long haul COVID, my daughter’s experience is that not only are her mast cells activating but she’s also having issues related to a dysregulated nervous system, such as dizziness upon standing, a fast heart rate and extreme anxiety.
So how does HeartMath figure into all of these nervous system issues? HeartMath is an app to allow you to view your inner emotional state based upon your heart rate and coherency. A Bluetooth device attaches to your earlobe to monitor your heart rate variability and guide you toward inner calm through real time feedback.
Heart rate as reflected on the HeartMath app. From the HeartMath Institute
If you are a follower of Dr. Joe Dispenza, he has been touting HeartMath for the better part of the last decade as a way to create the healthy vision you want in your life.
If you’d like to see a demonstration of HeartMath and the way to breathe to get the best results, watch this. (This video also includes information about how this type of breathing is helpful for treating long haul COVID).
I have found that there are times of the day when it’s really difficult for me to sit down and focus on my breathing. If I’d had a busy day at work, the transition into a calm breathing pattern is definitely needed, but sometimes quite difficult to maintain! However, I have been continuing to practice for 10 minutes a day, twice a day. I am certainly seeing results such as better sleep, more balance of my emotions and less anxiety overall. In other words, my parasympathetic nervous system is coming into balance!
For my daughter, she found that she has had to start small to not overwhelm her nervous system. Yes, even deep breathing can upset a very anxious body! If your nervous system is really overamped, you may need to start with just putting the Bluetooth device on your ear and breathing normally for several sessions before adding the deep abdominal breathing. The feedback from the app will communicate with you by sight with various colors and waves visible, but also by auditory dings. This helps your brain to know what it needs to do to “breathe better” and to create more calm.
I want to provide my body the best chance for healing, and if I can do so without medication and get good results, that’s amazing! There are HeartMath practitioners around the country that can assist you with getting all the information you need to get started on this. Or you can just purchase the Bluetooth device, load the app and proceed forth yourself. Either way, feeling calmer and less anxious will be your reward.
PS – I am not being compensated by HeartMath for this blog post. It is solely based upon my own and my daughter’s experience.
The ongoing saga of long COVID for my daughter, Michaela, continued into April 2022. Two prior blog posts on this topic are here (first) and here (second). She tried Benadryl, Pepcid, Zyrtec and Ketotifen along with Chinese herbs and creams, and each of them created more issues for her: vertigo, shaking, nausea and temperature extremes in her body. She decided to give up even trying to incorporate them into her healing routine.
She was experiencing so many symptoms that we realized that one doctor wasn’t going to be able to diagnose everything, nor provide a solution. The thought of her having to go to a cardiologist for the heart palpitations, an endocrinologist for her menstrual cycle issues, a neurologist for the brain fog, an ENT doctor for the dizziness and vestibular system, an allergist for the hives and mast cell activation symptoms, and an ophthalmologist for her vision issues was overwhelming. She didn’t have the energy to withstand so many doctor visits, nor the brain function to be able to make the appointments and then get herself to the doctor’s office without being able to drive. Yet she needed to do something, or she was going to continue to experience an array of issues that she had never had before with Mast Cell Activation Syndrome (MCAS).
My husband and I were doing searches online to help her find long-haul COVID groups (so that she might be able to speak with someone else experiencing what she was), dysautonomia groups, and any research that might be helpful for her to heal. We found that Western medicine doctors were prescribing medications that they hoped would work, which she couldn’t tolerate taking anyway, or sending patients to physical therapy, or sending them for more testing. We didn’t find anyone who had “the answer,” despite the fact that a few snake oil salesmen/doctors were out there peddling their “research”. A word of caution about that – given that Michaela and I have managed chronic illnesses for decades, we’re very attuned to doctors who claim to have all the answers that no one else has ever found. In general, we run in the other direction!
Because of her tenacity, Michaela got on the phone with Bright Health, her health insurance provider, and asked for help after telling them what she had been through with all of her symptoms and doctor visits that hadn’t provided her any help. She thankfully got a woman who listened, and provided her with the name of a physical therapist who she heard had some success with helping people with long-COVID. Michaela immediately called this new PT.
Michaela in her apartment in May 2022
Dr. Dan Stoot of High Definition Physical Therapy was the first doctor to understand what Michaela was going through and willing to help her with specific exercises. He was working on research about long COVID with the University of Denver, and had been working with patients for almost 2 years at that point and having success. He spoke with her over the phone and provided her with his cell number to contact him with any questions before her first appointment. This was wonderful! When she went into his clinic to be evaluated, he turned off the lights and asked her to do simple tests so as not to activate her nervous system. This allowed her body to calm down enough for him to get an accurate assessment.
He said that several of the issues that Michaela was experiencing were centered within her brain stem, and told her that her symptoms were similar to a Traumatic Brain Injury. He also told her that he had seen all the symptoms she was experiencing in his long-haul COVID patients. This helped her to realize she wasn’t alone in this mess. She shared with him about her suicidal thoughts, which he had heard about from other patients. This helped her to feel calmer, and that there was hope for some healing.
He had her begin with eye exercises since her inability to look at computer screens and to drive were the two biggest issues she wanted to handle. That one hour appointment wiped her out for the rest of the day!
Her body was in such a state of overload that she was having trouble sleeping, or even getting her body to rest, and also having issues with having enough energy to make it through an evaluation appointment.
She began to listen to the audio book for Breath by James Nestor which helped her to learn new breathing techniques to calm down her nervous system. Since she wasn’t able to be on the computer to watch any videos or do any Google searches, audio books and paper books became her sole entertainment and means to educate herself.
She began reading voraciously about Traditional Chinese Medicine, Immunology, Massage, Acupressure, Shamanic Healing work, the Autonomic Nervous System, Dysautonomia, the Vestibular System, and Qigong – especially Zhineng Qigong which came out of a Medicine-less hospital in China that combines Buddhist principles, Daoist principles, Western Science, Kung Fu and Medical Qigong.
Michaela started to slowly practice some Wisdom Healing Qigong that I had been practicing for a few years, however this practice was too fast for her and she followed this instead. Wisdom Healing is a “branch” of Qigong that is similar to Zhineng Qigong. The slower practice I linked to is Zhineng Qigong. She found that when she practiced this, her body felt better. The energy started to integrate better and she was able to breathe easier. One of the practices is called “Lift Chi Up Pour Chi Down” which is a series of movements done very slowly and looks similar to Tai Chi. There is also a Sound Healing practice that Michaela incorporated from Wisdom Healing Qigong, however she was experiencing burning in her internal organs so badly that she only listened to this practice rather than doing the sounds herself. These two practices became her main focus for healing along with the eye exercises Dr Dan Stoot had given to her.
When she went back to see Dr. Dan for her second appointment, he couldn’t believe the amount of progress she had made. He told her none of his other patients made such progress in one week and asked what she was doing. She told him about her breathing exercises, Lift Chi Up Pour Chi Down and Sound Healing practices. She still had so many symptoms and issues occurring, but to know she had made progress gave her not only a boost of hope, but also a commitment to continue with Qigong.
We knew of a few local Qigong practitioners and asked them for suggestions of Zhineng Qigong teachers. Michaela began to pursue several Qigong practitioners across the world and began having conversations with them about what she was experiencing, and asking if they knew of anyone who had healed themselves from Dysautonomia. Each person she spoke with would give her little nuggets of wisdom, but the only person she found who had healed herself was Dr. Cynthia Li who wrote Brave New Medicine. Dr Li also incorporated Wisdom Healing Qigong into her own healing journey. Michaela had read her book, and reached out only to find that Dr Li wasn’t taking any new patients. That didn’t deter her. Instead, she continued her quest to find someone who could teach her more about healing herself.
By the end of April, Michaela began practicing Qigong and Sound Healing for a total of 3 hours per day, mainly because that’s the amount of time these practitioners said they practiced in order to achieve health after a serious medical issue. She was willing to do anything to get better.
Despite doing the eye exercises that Dr Stoot gave to her, Michaela’s eyes weren’t getting better enough for her to feel comfortable driving. Dr Stoot suggested that she go to a Neuro Ophthalmologist, however once again these doctors aren’t in any insurance network, and private pay was required. Instead, she saw a “regular” ophthalmologist about her vision issues. All of his testing showed there was nothing wrong with her eyes. While you certainly don’t want to wish for an ailment, it would have been nice to have some diagnosis for specifically what was going on!
She found a practitioner for Rapid Resolution Therapy (RRT) to begin to resolve her Medical PTSD and to decrease her overall anxiety. Michaela’s issues with the medical establishment needed to be overcome in order for her to be able to have blood draws where she didn’t end up in a panic attack. This therapy did help her anxiety to calm down, and it also provided the opportunity for her to be able to notice what she was thinking when her body and nervous system began to ramp up.
Michaela was continuing to have digestion issues, blood pressure issues, an inability to control her body temperature, and urinary problems. A Google search on various types of Dysautonomia came up with a diagnosis called Autonomic Neuropathy that included these issues and more. While she didn’t have a formal diagnosis for this condition, it was helpful to have a name to call the constellation of symptoms that she was experiencing. We noticed that many of her symptoms she was experiencing came back to the Autonomic Nervous System, and it was evident that her nervous system was not responding appropriately.
She has begun to see a Medical Qigong Doctor candidate in Denver, Dina Rifkin, who even comes to her apartment! Dina began to teach her specific moves to help a specific organ. This type of Qigong is different from what Michaela was practicing, in that Medical Qigong can work with healing specific medical issues. Dina has healed herself from several chronic illnesses, which was the kind of experience that Michaela was looking for, in addition to Dina’s knowledge about Medical Qigong.
The process has been VERY slow because Michaela’s body overreacts to any type of stimulation, even when it’s good for her. She is given a few exercises to do each day, and has had to restrain herself from being an overachiever and doing too many. She tried that a few times and overwhelmed her body into a detoxing mess.
She has continued to visit the Network Chiropractor to integrate the energy in her body, and that has definitely helped her nervous system to calm down. It has been wonderful for her to get out of her apartment once per week and also to come back home feeling calm.
Michaela has also begun to work with a Zhineng Qigong teacher, Reyna Lerma, to perfect her form with Lift Chi Up Pour Chi Down in order to get even more energy healing from Qigong.
As of this writing, she has been practicing 3 hours of Qigong daily for 80 days, and she has seen enormous progress:
No more heart palpitations
She can sleep a full night from 9:30pm to 6:30am (and she keeps on this schedule!)
No more blood pooling
No more hot and cold extremities
No more fainting
No more paralysis of limbs
No more suicidal thoughts
No more brain fog
No more flushing or hot flashes
She can use computer and phone screens to work, watch movies, search Google and be on Zoom
She’s able to work at least 3 hours a day with ample energy
Her menstrual cycle lasts 7 days instead of the entire month
She can also now sit outside under her favorite tree and enjoy the sun and the Rocky Mountain fresh air.
She still wants to heal these next items, and feels sure that they will heal as she continues her pursuit of Qigong practices and energy healing:
End the idiopathic hives
Heal her gut so that she can eat a wide variety of foods again
Cease the eye issues so that she can drive
Be completely rid of organ burning/buzzing feelings
Have enough energy to work as much as she wants!
I will keep you updated with her progress. The amount of healing that she has experienced surpasses anyone that she has spoken to on social media in the various groups for long-haul COVID or Dysautonomia. Her goal in this quest to heal herself is to not just manage these many complex symptoms but truly heal the cause which created these symptoms in the first place. And then to share her experiences with anyone who is interested.
She has yet to meet anyone else who is using Qigong to heal themselves from these conditions or long-haul COVID, but this may become the only modality that can truly provide relief for the millions of people suffering and looking for a way to get back to their life!
To read the next installment in Michaela’s healing journey from Long COVID go here.
