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Living with Long Haul COVID for 10 months now!

Updated: May 13, 2023

This is a long-overdue update.

So much to share! I've been living with post viral syndrome, persistent COVID (PASC), since July 2021.


In case you have not read the first blog post on this topic I'm linking here to Confessions of COVID Long Hauler.

So the reason I haven't updated you is that life has been moving fast, 2022 feels like we entered a galactic wormhole. Unexpectedly, and miraculously, Jan, Feb, and March we spent buying a new home, choosing schools for my 3-year-old son, and working on fulfilling events that had been postponed since 2020 for my other business Cubick Events & Accommodation. April consisted of moving home and adjusting. Woweeeee coming out the other side and surviving all of that with persistent COVID has shown me I've come a long way since the heavy crashing in 2021 and Christmas time.


As I imagined and told my medical Drs many times, this virus is still alive somewhere in the body. The research now shows the virus RNA has been found for months after initial infection in Long COVID patients. Also, COVID is targeting specific organs in the body in which the immune system will not go, to avoid the risk of damage, the virus is hiding in these viral reservoirs in the body and flaring up.


The majority of us are women, and flare-ups do occur around the menstrual cycle. However, men are also suffering. Women get gaslit or dismissed as anxious and men generally get the impression they should 'toughen up. These are real symptoms!


The fundamental missing link here is the body and mind are NOT separate and act as one. The body can lead the mind and the mind can also lead the body.


DYSREGULATED NERVOUS SYSTEM

I first came across dysautonomia a few years ago when working with a regular client that had been diagnosed with this supposed ' rare disease'. I'm sure it's not so rare, more likely rare to find a doctor who knows what it is, or how to diagnose dysautonomia, MCAS, EDS, etc.


The central nervous system (CNS) can become dysregulated by stressors these can be physical (viral, chemical, bacterial) or emotional (shock, trauma, prolonged stress, loss). The way your body will adapt to these stressors depends on your environment, experiences, and genetics.


The autonomic nervous system (ANS) regulates all of the systems in the body. Therefore, the immune function, hormone function, and cognitive functions can all become disrupted once the ANS is not regulated. This is the root cause of the widespread symptoms that people are experiencing post COVID.


As someone that experienced Complex PTSD, it's no surprise to me that my body was not able to efficiently deal with the viral infection in July. I was cramming to complete my PhD defense paper, taking care of a toddler, with a UTI, and in a neck brace. My 13-year-old french bulldog Pepe, a piece of my heart, passed away suddenly at the end of August. My symptoms returned heavily one week later.


To give you an update on my symptoms in 2022:


- Neurological issues - some loss of movement/speech

- Memory Loss

- Confusion, feeling lost, scrambling to think

- Loss of sequences

- Air hunger

- Irritability

- Fatigue

- Heavy and painful muscles

- Extreme thirst and dehydrated

- Sensory sensitivity (noise/light/scent)

- Changes in taste and smell (This was particularly bad in Jan/Feb, I had chemical scents stuck in my head giving me a headache for weeks at a time)


Since having Long COVID, I've also dealt with other viral infections and the reactivation of Shingles, and possibly EBV and Lyme which both showed up in blood work. When the immune system is suppressed other infections can reactivate in the body, not to mention two years of sterilisation and suppression of other viruses, and possible vaccinations causing havoc with an already exasperated immune system.


*Update Aug 2022*


After coming to terms with the seizures I did have a brain MRI which showed an enlarged left ventricle, this could have been a mini stroke while having COVID at home which is was the Dr initially did also think. I also did two EEG's, one without sleep for 24 hours, the whole experience was pretty grose, hyperventilating breathing with a strobe in your face hooked up to an EEG machine. Of course, I had major tachycardia, they found on both EEGs abnormal activity in the left focal region of the brain. I have uncontrollable muscle spasms and felt they brought me to the brink of a siezure each time then I left feel awful confused and pretty low. The Dr's advice simply go get a coffee you'll be ok. Thanks... Not. 🥴 I can't tolerate coffee btw.



What's the link between type A personality + Long Haul COVID?

Long Haul COVID usually hits high achievers. The missing link is trauma and everyone to some degree has some form of trauma. For 'type A's' or 'perfectionists' the body has been programmed usually from an early age to not feel safe. This manifests itself as constantly stimulating the nervous system's sympathetic state of going and going, and doing more just to stop immobilization which doesn't feel 'safe' (see stress cycle figure at the bottom of the article).


If I could just be perfect everything would be alright!

This type of thinking is where Type A personalities get their drive but it's also a double-edged sword because there is no such thing as perfection, so striving for some far-out there ideal is brutal to live with day in, day out. That's why healing from PTSD, trauma, inner child work, rewiring of the brain, and nervous system regulation, all play a role in healing from persistent COVID.


The mitochondria can remember stressors for more than 50 generations! Imagine how overloaded our cells are... and in need of detoxing and re-programming.



What support am I receiving from the medical community?

In a nutshell.... not much! I did find a Long haul COVID clinic here in Barcelona in Can Ruti, but I don't live in the catchment area so I'm not eligible. The private and national health are both offering me to see specialists, in my case I'm seeing a neurologist, but I've been offered every other specialist going, but I prefer not to see so many different doctors unless necessary. To be honest, most Drs I've seen are not as well researched in Long COVID. I would say overall the message I get is 'keep holding on' or 'you'll just have to live with this.


This is bullshit! Let me tell you that recovery is 100% possible and if anyone tells you any different just let them know that this is curable and you will get better. Full stop!



My blood work showed elevated levels of creatine kinase showing muscle damage.


Antinuclear ANA antibodies were found, showing auto-immunity.


Lyme and EBV IgG were found, showing previous exposure to these viruses.


EKG on the heart, plus brain, and body scans all came back ok, micro clotting is just not visible on any of these diagnostic tools.


I turned down my neurologist's suggestions for a brain MRI as I knew intuitively they wouldn't find anything and I didn't want to keep exposing myself, I've had so many MRI's already at this point, but this may be useful for you if your Dr suggests it.


I was planning on doing a Cytokine Panel with IncellDx and found that Synlab in Spain will do this panel for me for 340€, the next piece of this puzzle is finding an MD to prescribe the specific medication which ranges from Ivermectin, Statins, HIV meds Maraviroc, Steroids, based on your cytokine panel results and interpretations.


Personally, I have not felt called to do this because of the improvement in my symptoms and I am not sure my system would do well with these types of medication, I've heard mixed results from people, some it has cured them fully, and others cured temporarily. That's why medicine is only part of the puzzle, lifestyle, emotional health, nutrition, and other changes are needed to allow the body to adapt and heal.


All of my training in Quantum Medicine has been precisely for this reason. To create the quantum shifts in healing and shift out of states of survival into thriving.


GOOD NEWS!

I have progressively been improving and the crash cycle seems to have smoothed out with no extreme fatigue now. I'm able to go to pilates once a week, and walk my dog, in case I do feel fatigued, I try to listen to my body rather than push through, although this is not always possible being a mama.


Dysregulation is not damaged and the nervous system can and bodily systems can be regulated and homeostasis is always possible. Faith in healing and compassion for yourself throughout the process is fundamental.


What were my improvements?


- New hair growth and no more hair loss.

- The crashes became less intense and less frequent, even with my demanding busy schedule this past 4 months, moving house, and huge financial and lifestyle issues and decisions. I was able to manage all that without any major big crashes. Although I did take time to rest and tried to manage my timetable so I wouldn't crash. I still have fatigue but I don't need 5 days in a dark room now...


- Tachycardia subsided and pain in the chest has stopped.


- Vertigo has stopped, occasional dizziness sometimes though rarely now.


- Smoke taste/smell or paint stripper taste/smell to the point of getting headaches, this has thankfully dissipated and I hope this NEVER returns! This neurological issue was really overwhelming for me during my busiest in February and I found it hard to eat and lost weight.


WHAT IS WORKING FOR ME

This is my case everyone is different so please listen to your own body and intuition, and also seek professional support.


Specifically targeted quality supplements which I muscle test before taking.


- Seeking Health B Vitamins

- NAC

- Seeking Health Electrolytes

- Just Thrive Ultimate IgG

- Probiotics

- Lots of hydration 3L of filtered water a day

- Melatonin before bed


The key is listening to your own body I tried cold water exposure and my body is not ready for more shock treatment so it didn't work, likewise some probiotics and fermented foods didn't work either or only in very small amounts. Observe how your body-mind reacts to certain things that you introduce, and go slowly with it. Remember healing is not linear and it can be messy, and that's ok. Love yourself throughout this process.


Vegas Nerve Stimulation

Exercises with eye and neck movements.

vTENS stimulator using a TENS machine and ear clips.

You can also stimulate the vegas nerve through signing, toning or humming, gargling, or conscious breathing.



Trauma Healing & Inner Child Healing work - PTSD is a predetermining factor of Long COVID. Healing the wounded parts of ourselves through energy work, mindfulness, self-compassion, and other tools and techniques have been super important.


Pilates - It doesn't have to be pilates, but simply gently moving the body consciously and breathing releases the body from freeze trauma states and allows the body to switch to healthier regulation of the nervous system. TRE exercises can also be simple and effective.


Self-compassion - catching those 'type A' thoughts, even if all I managed to do that day was brush my teeth and feed myself, I'm learning to be my own cheerleader, and champion all the small milestones. Focusing on what I am improving on, and trying to shift hyperfocus and awareness from all the things that I didn't do, to all of the no matter how small you think they are, the positive moments in the day.


Autophagy - I always recommend intuitive eating and intuitively 4 days out of the week I don't eat until the afternoon. I'm NOT strict or rigid with this and don't typically suggest fasting, especially for women. This has been useful for me in detoxing and nourishing the cells.


Nutrition - I was following an anti-inflammatory diet but with a busy year I let that slip and in typical Barcelona style, I ate a lot of bread and bravas! Although I switched to mostly plant-based I think nutrition depends on what you intuitively feel your body needs. Whole organic foods, washed to remove any chemicals and perhaps avoid or reduce the 'dirty dozen' foods and check out and possibly introduce more of the 'clean fifteen' foods.


Feel free to DM me with your questions about Long Haul COVID or any clarifications on my journey.



Check out this video for the latest research of Long COVID. Amy Proal is a microbiologist and President/Research Team Coordinator of the non-profit PolyBio Research Foundation. Her work examines the molecular mechanisms by which viral, bacterial, and fungal pathogens dysregulate human gene expression, immunity, and metabolism.





The stress cycle figure.



The Polyvagal Theory Traffic Light Concept


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