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Answering COVID-19 FAQ from Bendy Folks

Remember: Always consult with your own medical team before making any changes to your medications, supplements or diet.

Lots of people with hypermobility disorders (like Ehlers-Danlos Syndromes) and related conditions (like POTS and MCAS) have asked about how the coronavirus could impact them. If your question is not covered, I will do my best to answer it in my next blog post or online event.

FAQ: How do mast cells respond to COVID-19? Should we be inhibiting our mast cell responses?

Answer: You should continue on your current regimen, especially if it has been beneficial. Patients with mast cell activation syndrome (MCAS) undergoing MCAS directed treatment likely fare better than those with untreated or undiagnosed MCAS. Some experts believe that some of the "young, healthy" patients that have done poorly with COVID may have undiagnosed and untreated MCAS.

FAQ: How can we support our respiratory system to fight COVID as best we can if we get it?

Answer: NAC (N-acetylcysteine) is especially important for lung function and clearing mucus and is the rate limiting step for glutathione production (the most important intracellular antioxidant). 600-900 mg daily can be used for prevention with 600 mg three times a day often used for treatment. Consider laying on your belly to improve your breathing and oxygen levels. This handout has useful photos and tips.

FAQ: I have symptoms of Covid, but have not been tested. Is there anything I should be doing besides fluids, rest, Tylenol etc as a person with MCAD, EDS, and POTS?

Answer: Stay hydrated. Drink plenty of water and add electrolytes as needed. Avoid caffeine as that can be dehydrating. Tea contains much less caffeine than coffee and is beneficial to the immune system due to the high flavonoid content (especially green tea). Most of us who specialize in Bendy folks, recommend avoiding NSAIDs (non-steroidal anti-inflammatories) IF POSSIBLE. Acetaminophen has implications as well since it depletes our most important antioxidant, glutathione (see blog post "My COVID-19 Plan"). If you have a low grade fever, many experts suggest "letting it ride" (ie: waiting it out) and the pendulum seems to have swung quite favorably in that direction. Elevated body temperature plays a crucial role in fighting infection. Mayo Clinic provides guidelines you may want to consider for children and adults.

FAQ: I know we should develop and emergency plan in case of COVID, but most of my doctors are not familiar with EDS, POTS, and MCAS. etc. Instead of :"emergency plan," what specifically should we be doing and conveying? I need to know more than just "be ready". 

Answer: Download the Anesthesia-Surgery emergency card from the website. It is the first link on the Resources page. This card contains information regarding airway management that may come in handy in the (hopefully unlikely) event that you need endotracheal intubation and/or mechanical ventilation (breathing tube and ventilator). Also, set aside a two week supply of all your own medications to take with you to the hospital just in case as they may not have some of the medications you use and/or they may contain different excipients (ie: "inactive" ingredients).

FAQ: What are your thoughts on melatonin for COVID-19?

Answer: Melatonin 1 to 3 mg sustained release in the evening can be used for prevention. 10-20 mg (non-sustained release is fine) can be used for treatment. This article describes some of the important effects of this anti-inflammatory, anti-viral and anti-oxidative molecules.

FAQ: What do you recommend for stabilizing mast cells related to COVID-19?

Answer: Two of my favorite supplements for mast cell stabilization (and boosting immunity as well as lowering inflammation) are QUERCETIN and PEA (Palmitoylethanolamide). Both are better absorbed as liposomal preparations (up to 20 times better bioavailability). Quercetin can be taken sublingually (under the tongue). You can open the capsule and put the powder under the tongue (but be aware that it does not taste good). For PEA, I often recommend 400 mg twice daily for prevention and 400 mg three times a day for treatment of coronavirus/cold/flu.

FAQ: Are there foods I can eat to support my immune system?

Answer: Include flavonoids in your diet as they are critically important for modulating the immune response. Flavonoids interfere with the NLRP3 inflammasome which contributes to cytokine storm. Some important ones are found in citrus fruits, olives, star fruit, parsley, spinach, kale, broccoli, tea, beans, celery, basil, cilantro, oregano, and turmeric. Adequate protein intake is also crucially important for proper immune system functioning.

FAQ: How else can I support my immune system?

Answer: See my blog post "My COVID-19 Plan"

A couple of additional notes for treatment of COVID:

1. Some people have seen benefits with high dose oral vitamin C (dosed to gut tolerance - up to 500 mg every hour). It is preferable to have a brand that contains citrus bioflavonoids. The ASCORBIC non-acid forms / I.e. mineral salts are tolerated better by the gastrointestinal system (ie: sodium ascorbate). "Dosed to gut tolerance" is a phrase doctors use to refer to pushing the dose of vitamin C until diarrhea starts and then backing off some. Intravenous vitamin C is also being used to treat COVID with some success. A special test called G6PD should be done prior to administration of high dose vitamin C. If you have received high dose vitamin C in the past without complications, be sure to notify your healthcare team as you likely do not need this test repeated.

2. Consider FIVE day course of higher-dose Zinc (most recommended dosages range from 20-100mg per day) taken in the middle of a large meal and spread out throughout the day. Zinc plays a critical role in the development and maintenance of immune function. Deficiency is quite common globally with estimates ranging from 17-20% with the vast majority occurring in developing countries. Zinc deficiency also occurs more commonly in these groups: the elderly, vegans/vegetarians and people with chronic disease.

FAQ: Is there anything I should avoid doing?

Answer: It is best to avoid consuming alcohol as it does weaken immunity and increases inflammation. If you would like to drink some alcohol, it is best to do so in moderation and red wine would be the best choice since it contains the flavonoid, resveratrol. Also, avoid watching the news as much as possible as the goal of the media is to grasp your attention by any means necessary (which usually involves invoking fear and raising your anxiety levels so you stay tuned in). Monitor your time online as well and balance that with spending time outdoors and being as active as possible. Exercise in moderation; intense training temporarily suppresses the immune system.




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