Tag Archives: post covid

Long Haul COVID and Healing

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 read a book by Donna Eden called Energy Medicine: Balancing Your Body’s Energies for Optimal Health, Joy and Vitality which was very helpful with healing energy patterns in the body that promote healing.

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.

Mast Cell Activation Syndrome and Post COVID-19 Illness

A recently published article by Dr. Lawrence Afrin, the author of Never Bet Against Occum: Mast Cell Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, and two other mast cell doctors, have found a consistency of symptoms of Mast Cell Activation Syndrome (MCAS) and those of “long-haul COVID-19”. They also postulate that those patients with severe COVID-19 symptoms of hyperinflammatory cytokine storms may in fact have undiagnosed MCAS, a chronic multisystem inflammatory disease.

If you are not familiar with the illness of Mast Cell Activation Syndrome, it is a beast of an illness to live with and to diagnose, mainly because the symptoms can look like so many other illnesses. (I have written a series of informational articles about MCAS here. )

For some people, the symptoms of MCAS aren’t enough to actually seek medical care. They may have an occasional stomach ache, or rash, and have never needed to become a detective to determine why they were able to eat blueberries, for example, last month and this month their stomach hurt horribly after eating them. Or the few hives that they get in the autumn season aren’t enough to bother them. Yet underlying these symptoms and others, the body’s mast cells are overreactive, while the person will declare themselves perfectly healthy. Then, when the body begins to fight off a virus such as COVID-19, the body overcompensates its response to the viral load and releases thousands of chemicals (cue the cytokine storm) that end up doing more damage to the body than the virus itself.

SARS-CoV-2-Reactive T Cells Found in Patients with Severe COVID-19

Recent statistics regarding COVID-19 suggest that only 15-20% of patients will experience a severe form of the illness. It is interesting to note that previous research on the prevalence of MCAS in the developed world is 17%, with the abundance of individuals unaware that the symptoms they are experiencing are in fact from mast cells acting abnormally.

Any virus would call forth a response by mast cells in order to heal the body. The problem with MCAS individuals who remain undiagnosed and therefore untreated, is that their mast cells are dysfunctional and react inappropriately to COVID-19 causing thousands of chemicals to be released into the body.

Fatal cases of COVID-19 are frequently caused by cardiovascular conditions, and heart damage has been one of the frequently cited long-term affects of the illness. Mast cells play a significant role in cardiovascular complications seen with COVID-19 such as pulmonary embolisms. Additionally, mast cells patients frequently cite “brain fog” as one of their symptoms, a common complaint of long-haulers with COVID-19.

Fatigue is a classic symptom of MCAS, frequently made worse by insomnia. Once again, these are common complaints of individuals who are still experiencing symptoms months after being diagnosed with COVID-19. In the research report, the doctors provide a table of symptoms by organ/system comparing MCAS with COVID-19 patients. The similarities are striking.

For individuals in the midst of the virus, doctors are finding that medications used to mitigate the symptoms of MCAS, inhibiting mast cell activation, are also helping COVID-19 patients: cromolyn; leukotriene inhibitors, dexamethasone, low-dose naltrexone, quercetin, and H1 and H2 blockers (antihistamines such as Zyrtec and Pepcid). These drugs might mitigate the severity of the illness, helping patients to not progress to the severest form of the disease.

An interesting note in the article concerned MCAS patients who had been previously diagnosed and were being treated for their mast cell activation. When these patients tested positive for a COVID-19 infection, all fared well enough that the doctors stated that “none have required mechanical ventilation, let alone died”. Their conclusion was that the patients had their mast cells at least partially controlled so that they did not suffer the most severe courses of the disease, but that they were still at increased risk for suffering from the post-COVID-19 illness.

For those of us with a diagnosis of MCAS, the volume of research that is currently occurring on COVID-19 will undoubtedly help us to have more understanding of our illness. And hopefully, a cure!

You can read the full article, Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome in the International Journal of Infectious Diseases.