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Long Hauler Worsening Symptoms and Doctors are Stumped
So the TLDR is I(And a very solid portion of my battalion) developed obvious covid symptoms simultaneously in December of 2019. Since then I have had "long covid" symptoms that have increased steadily in severity, which are listed below:
• Shortness of breath, I would say my current lung capacity is half of what it was prior to 2019 on the best of days for no obvious reason, and it gets worse every year.
• Swelling, discoloration(Turn a purplish color), and pain in hands and feet that worsens depending on how much trouble I am having breathing that day
• Dizziness and blurred vision
• Chest pain
• Confusion(IE endlessly forgetting what I am doing), brain fog, and very heightened anxiety
• General weakness. I have gone from running 3 miles a day and a regular workout routine to only being able to walk around the neighborhood on good days over the course of 3 years. It effectively ended my military career and threatens my day-to-day ability to take care of myself and maintain my career.
• Extreme fatigue, on days where I can sleep it can be as much as 16 hours a day. On days where the irritation is especially bad I can't sleep at all, just endless "cold sweats".
These symptoms increase or decrease day by day and are directly related to how my breathing is. I have been given multiple CT scans and Xrays that show no real issues(Links can be given to the results on request unless I can post them here). Pulmonary function tests, stress tests, sleep apnea tests, etc have been given to me ad nauseum with zero helpful results. I have been put on inhalers but they made me significantly worse, basically anything that has to do with putting things in my lungs irritates them.
Is there any direction, like scans or anything, that I can take or am I basically SOL until it finally takes me out via heartattack? I have had zero luck with any relief. Is oxygen the way to go?
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Thank you for serving our country. (I served in Viet Nam, so you can guess my age.)
Sorry about your symptoms. I had them for 1.5 years and now I am back to normal. So hang in there. I will share what I have found.
You asked “Is oxygen the way to go”. The answer is yes, but we have to allow our bodies to bring the oxygen to all parts of our bodies.
Early this year, I read about a study in Italy that used L-arginine and vitamin C to improve the long covid symptoms that I had been experiencing. So I tried it and found that the “backlash” (post exertional malaise) that I experienced in succeeding days after exercising was gone. That encouraged me to continue trying it.
L-arginine is an amino acid that converts in our body to nitric oxide that relaxes our blood vessels to allow better flow which increases oxygen to all of our body. The vitamin C is an antioxidant that keeps free radicals under control.
I have been taking L-arginine and L-citrulline, limiting the total dose to 9 grams per day. Vitamin C of 500 mg should be taken with them. I limit taking vitamin C as a supplement to around 700 mg per day. I found that around 1,000 mg my stomach was in pain.
I have to raise caution if you have low blood pressure. The increase in nitric oxide will lower blood pressure. That has been good for me, since my bp was high.
Also, caution if you are on any prescriptions that could interact with L-arginine and L-citrulline, such as warfarin. If you are on scripts, you should check for interactions at drugs.com or ask your Doc.
However, having food sources would not be a concern. Foods, like beets, kale, arugula, blueberries, pecans, peanuts, celery have nitrate and nitrites that our bodies convert to nitric oxide. Vitamin C is also needed with the food, so I have orange slices with some of the foods, like peanut butter and celery.
I will give you a link to an article on Medicine Net on nitric oxide that would be a good place to start. Research “nitric oxide” and “nitric oxide foods”. Also, research creatine and L-carnitine that help with energy. Think in terms of what body builders and athletes take to get oxygen throughout their bodies.
Our bodies create nitric oxide via 2 methods: the lining along our blood vessels and the saliva in our mouths. As we get older, the the blood vessel lining decreases in making nitirc oxide, so we are dependent on the good bacteria in our saliva when we are chewing food to create nitiric oxide. (Take your time in chewing the kale. It is helping you.) Therefore, do not use mouth wash that kills the good bacteria in your mouth that converts food to nitric oxide. Also no toothpaste with flouride in it.
Plan on about 3 months to fully recover, but you should find improvement in the first couple weeks.
Here is the MedicineNet article:
What Does Nitric Oxide Do to Your Body? https://www.medicinenet.com/what_does_nitric_oxide_do_to_your_body/article.htm
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5 ReactionsHey There! Have they tried you with a nebulizer with Albuterol? Albuterol does not have steroids in it. Albuterol also comes in a rescue inhaler. I wonder if you are on one that has a steroid in it and that may be what is aggravating your lungs.
Praying for you to get better.
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2 ReactionsYou have almost the exact same symptoms/chronic illnesses that I have. I have found a clinic that is accepting new patients via telehealth. I been diagnosed with Non vaxxed Long Covid. I have had Covid at least 3x last known 1/23. The spike protein lay dormant in my brain and other tissues creating havoc!!! I am now awaiting results from my micro clot bloodwork. I will be starting on my triple anticoagulant regiment tomorrow as well as a host of supplements to help rid the inflammation and spike protein from my body. Research The Leading Edge Clinic headed up by Dr Pierre Kory. I’ve finally found the answers as to why I now have Dysautonomia, POTS, MECFS, MCAS, PAH, tinnitus, brain fog, migraines, anxiety and a host of other disorders
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1 ReactionI wanted to comment on the timeline. December 2019 is when I think I was exposed - at a crowded venue in Washington DC on New Year's Eve. The CDC won't budge on their first case date of 1/20/2020 - a case who self-reported to a hospital after returning from Wuhan. DC is such an international city - it had to have been in DC by December 2019. I wish the CDC would make a concerted effort to trace the early origins of this thing.
Thirteen time experienced. Massive problems.
Search nicotine, long covid, Sars CoV-2, Covid, nicotinic cholergenic pathway. Read up.
It cleared my long Covid, cleared my Covid triggered Viral Reactive Arthitis, GI issues, vascular issues, neuro issues. Find your right dose, patches, gum, pouches and give it 30 days and watch what happens.
Jt
The moderator advised me how to provide you with a lengthy statement I wrote a few days ago.
Justin
See the prior comment:
https://connect.mayoclinic.org/comment/1075630/
I have been curious about using nicotine as nothing has worked on my arthritis symptoms. It’s Achilles swelling and knee swelling and pain. Dozens of prescriptions and the only thing that helps is prednisone.
Do you have a recommended dose of nicotine patch to try?
I believe my daughter had it in December 2019. I personally believe it was in the US in 2019.
I have found curcumin very helpful with arthritis, plus icing with a gel pack for 20 minutes.
I appreciate that but we passed that route about 2 years ago. When I tell you NOTHING has provided pain or swelling relief I mean all drugs! Over the counter and high priced prescription injections. Currently about to give up on Cosentyx after 3 months of uselessness. The only thing that has helped us lots of prednisone and I cannot stay on that for obvious reasons.
Before this happens in March 2020, I was an avid advocate of curcumin. Now it laughs at me.