Updated: Jun 30
Are you wondering why I haven't posted a new blog for a while? We have had a lot going on since the beginning of the year but the most important thing has been dealing with the effects of Long Term Covid in my husband, John. More on the other reasons in another blog.
In early December of 2021 both John and I came down with Covid. My bout with the illness was relatively mild and I managed to bounce back rather quickly with only a few things that lingered another month or so. John was another story entirely. His illness followed a more severe course with low oxygen levels, severe brain fog, orthostatic hypotension and increased neurological symptoms.
By mid-January the brain fog, severe at times, had improved significantly and we focused our attention on orthostatic intolerance. John was experiencing an inadequate heart rate response on standing and a drop of 50 points in blood pressure. This is an indication of dis-regulation of the autonomic nervous system, sometimes called autonomic insufficiency. The autonomic nervous system regulates both the sympathetic and parasympathetic nervous systems. The sympathetic nervous system is regulated through the nerves of the thoracic lumbar spinal cord, while the parasympathetic nervous system is regulated through the vagus nerve via the cervical and sacral nerves of the spinal cord.
Problems with the sympathetic and parasympathetic nervous systems are well documented in the PD research and there is some historical research connecting viral infections to the onset of PD symptoms. In light of this history, it makes sense that having Covid and the lingering effects of long Covid could increase the impact of these underlying PD complications. Several researchers have published regarding similar possible complications with the vaccines as the spike protein is the primary driver of these effects.
This description (below) of orthostatic intolerance comes from a January 2021 paper from the Imperial College of London,
"Orthostatic intolerance syndromes include orthostatic hypotension (OH), vasovagal syncope (VVS) and postural orthostatic tachycardia syndrome (POTS). The pathophysiology hinges on an abnormal autonomic response to orthostasis (standing up). When a healthy person stands, blood pools in the pelvis and legs, reducing venous return to the heart. This is detected by baroreceptors in the heart and aorta, which respond by increasing sympathetic neural and adrenergic tone (mediated by norepinephrine and epinephrine respectively). This results in tachycardia (thus compensating for reduced stroke volume). This is then followed by vasoconstriction in the splanchnic vascular bed, which increases venous return to the heart. In orthostatic intolerance, the release of epinephrine and norepinephrine causes pronounced tachycardia, which is experienced as palpitations, breathlessness and chest pain (common symptoms of ‘long COVID’). Very high catecholamine levels can lead to paradoxical vasodilatation, sympathetic activity withdrawal and activation of the vagus nerve resulting in hypotension, dizziness and ultimately syncope. These syndromes may be exacerbated by hypovolaemia resulting from the initial infection or due to deconditioning by bedrest. Prolonged bedrest (there have been extensive studies of head-down bedrest simulating chronic weightlessness in astronauts) leads to reduced cardiac output and stroke volume, hypovolaemia, baroreflex impairment, and withdrawal of the sympathetic neural response."
John is experiencing one aspect of this syndrome while many others are experiencing POTS, which is the opposite reaction in terms of heart rate where the heart rate increases rapidly upon standing but the blood pressure falls. One interesting piece of the puzzle relates to exercise and the loss of conditioning during Covid that may contribute to the long term symptoms. As many of you know, John is an avid biker, and has been instrumental in helping to spread the Pedaling for Parkinson's biking programs across the country. He was in very good condition prior to Covid, exercising nearly 7 days a week. Since having Covid in December, he has only been riding his stationary bike on a very limited schedule and has "lost his conditioning" so to speak. After months of little or no exercise getting back in to the swing in the middle of a move has not helped (we have moved to our family farm in Kentucky). We have the bike setup at the new place with a goal to start riding again this week once our internet is installed and he can reconnect with the PFP group. If you’re interested in joint the PFP biking groupers we can get you the link.
In the paper linked above, the authors hypothesize that these symptoms of the autonomic nervous system may be the result of the virus and/or immune-mediated disruption to the autonomic nervous system and in other papers the group ties in the connection to something called molecular mimicry and autoimmune antibodies.
“As I reflect on what this virus may be teaching us about other things, like a disrupted microbiome and diseases like Parkinson's, I want to encourage you to be patient. It takes time to rebuild the microbiome in your gut and that what needs to be done.” – Martha Carlin, CEO and Citizen Scientist • BiotiQuest
Connecting the dots
I did a presentation in November 2021 on molecular mimicry in Parkinson's, so this work is quite consistent with the hypothesis we have been working on in our research. My hypothesis on Parkinson's and molecular mimicry was sparked back in 2015 when I read a paper by Dr. Isaac Ginsburg of Hebrew University. His paper was on long term post-infectious sequelae (a condition which is the consequence of a previous disease or injury). Some of the autoantibodies found by the Covid researchers are tied to potential attack of human tissues including the olfactory receptor, B-cells, macrophages, endothelial cells, heart, brain, liver and lungs. Additionally there are connections to mitochondrial cytochrome c oxidase and cell membrane assembly.
I am reflecting now on what Covid may be teaching us about many of our chronic illness that may actually be post-infectious sequelae. Here is a diagram from my presentation (below). You can watch the presentation on the earlier blog post).
I started digging in to the research on why some people recover just fine and others don't and what the long term impacts could be. Over the many years of my researching Parkinson's I have gotten to know Dr. Stephanie Seneff of MIT. One of her early areas of focus was on the impacts of glyphosate in human biochemistry as a potential driving factor for many chronic diseases like Parkinson's. Dr. Seneff's work, as well as other researcher's work, has identified the risk of more severe Covid with a disrupted microbiome.
This week we had an appointment with John's neurologist. He is doing much better but this has been a setback. Just before the visit I had researched a drug that John used to take called Amantadine. It is an antiviral historically used to treat Influenza. He had stopped taking it a while back. There is some recent research on its potential as a treatment for Covid so John has started back on the Amantadine. He seems to be showing more improvement in the days since this has started as well. This drug interferes with a viruses ability to replicate.
John has also started doing the ProLon, fast mimicking diet. This program was designed by Dr. Longo whose research has shown that fasting and the fast mimicking diet can support autophagy. Autophagy is the process by which the body recycles damaged cells to the basic amino acids/raw materials that can be reused by the body. The process of autophagy does not work well in PD. John just completed his second 5-Day fast mimicking diet and both times he seemed to feel and do much better. He will continue this program once a month for the next several months. Fasting has also been shown to improve microbiome diversity, allows the digestive system to rest and the body to focus on repair.
As you know, I'm dedicated to studying the impact of the microbiome on Parkinson's and other chronic diseases and this made a lot of sense to me. The microbiome issues that were identified in this careful but small study from China, were reduced species of Lactobacillus and Bifidobacteria, essentially the same key species that are in low abundance in Parkinson's disease. There are now more than 280 papers in PubMed Search published on the topic of gut dysbiosis and Covid-19. I am pretty confident that John's microbiome is contributing to BOTH his PD and his long Covid symptoms. But now, what to do about it!
This morning I watched an interview with Dr. Sabin Hazan of ProgenBiome discussing the microbiome and Covid-19. She is a pioneer in using fecal transplantation (FMT) to treat many chronic illnesses and is currently working on clinical trial approval to use FMT in Parkinson's. John is in the queue for this trial once it is approved by the FDA. Her research in Covid patients has found that a low level of Bifidobacteria is an indicator of more complex issues with Covid infections and she believes that restoring and supporting these bacteria in the microbiome can be critical to recovery and better outcomes.
Digging around in the research I also learned that some people with long Covid are experiencing Parkinson-like symptoms and the Spike protein aggregates in a similar way as alpha-synuclein. We have increased John's intake of mannitol this past week. You may know that from earlier posts about the research from Israel showing that mannitol can stop the aggregation of these proteins. We are optimistic that this will have an impact. In addition, a reader wrote me about making yogurt with my probiotic for her neighbor who had long Covid, PD-like symptoms. It seemed to have a significant impact after about 6 weeks. Making yogurt with the probiotic increases the number of live bacteria significantly. So I am starting to make the yogurt and will see how it goes. I am also planning to make a Bifidocacteria concentration yogurt or tonic to try with John and see if that helps. The last time John had trouble with “freezing gate” was a back in 2016 was when I learned of the mannitol research and first made my probiotic. So I am hopeful that this higher count through the yogurt will have some positive impacts. Click here for the yogurt recipe. I'll keep you posted. I am blessed by the many people who reach out to me with ideas for Parkinson's and other chronic health issues. We are, as always, open to considering how something so simple could change the internal ecosystem and thus change the course of disease for John.
Where we are
The other thing we have had going on for the past month is a big move from Colorado to our farm in Kentucky to get away from the big city and reduce our stress. That said, there is a lot of stress in moving and that also effects the microbiome! Part of the reason we made the move is so that we can grow our own food and know what is IN and ON it! As you know from my many posts I have a clear understanding of how the toxins in our food supply are impacting our collective health. We are getting back on track with reduced stress and John gets a little better each day.
It sure seemed like this virus was waning just after we caught it but that does not seem to be the case. This makes sense given that the virus is a coronavirus which at its root is the common cold that circulates year round. As I reflect on what this virus may be teaching us about other things, like a disrupted microbiome and diseases like Parkinson's, I want to encourage you to be patient. It takes time to rebuild the microbiome in your gut and that what needs to be done.
I hope you and all your loved ones are safe and well.