Long COVID exists for 5+ years: Share what has or not worked for you

@greenshade

I have found that Bifidobacterium Adolescentis SH001 (along with Bifidobacterium Longum SH015 and prebiotics) did help with my high histamine symptoms (SOB and racing heart at night, morning bloating and headache, brain fog etc.) and I have noticed if a do get a bug, it is very mild. I used it for two months. I bought it from Element Longevity once and Amazon the other time. I tried for a third month, but the side effects (for me) were too difficult to continue with it (ached all over, fatigue, very stiff joints) I know that nicotine patches work for Long Covid symptoms as one of my practitioners use one for her long Covid. The above Adolescentis probiotic does make nicotinic acid so maybe that is why it helped with symptoms.

Next I am trying probiotics (with prebiotics) that specifically degrade histamine. Waiting for reply from naturopathic doctor for suggestions.

I have been on Low Dose Naltrexone for over 9 months now and it does improve my day to day functioning. I have much less inflammation...so much less pain and I sleep better. I am less allergic to everything so have less rashes, facial flushing and runny/stuffy nose. I get a little burst of energy about 3-4 hours after I take it so that lets me be productive more of the day. I can walk about 2/3 of a mile every day in the morning without exercise induced malaise, Doc said I could split my dose so I get more energy twice a day so I am going to try that. After five years (going on 6) of Long COVID, this is the best I have felt but not nearly 50% of what I had before,

LDN is considered to be an immune system regulator so that is probably why it helps.

To the Mayo Clinic Long COVID Team,

My name is Richard Goldstein. I contracted COVID-19 on January 6, 2021 while working on duty as a police officer. More than five years later, I am still living with persistent symptoms and am now medically retired, yet I am still involved in an ongoing workers’ compensation process where insurers continue to question the legitimacy of my condition.

My symptoms include brain fog, tinnitus, chronic fatigue, reduced lung capacity, joint pain, body aches, muscle weakness, reduced endurance, and a pattern of having “good days and bad days.” Some days I can function relatively well, and the next day I may be completely exhausted. A pulmonary specialist has documented glass-type nodules in my lungs, and I have also experienced rashes on my arms and legs.

Like many others, I have been made to feel as though my symptoms are not believed, which has been extremely frustrating and emotionally difficult. Finding communities of people experiencing the same long-term effects has been validating and reassuring — I finally know I am not alone and not imagining this.

I have also noticed that red light therapy seems to help somewhat with symptoms. I am curious whether others with Long COVID experience the same fluctuation in energy levels — feeling relatively strong one day and significantly worse the next.

I would appreciate any information about your Long COVID programs, evaluation options, or resources available to patients like me.

Thank you for the work you do and for recognizing the reality of this condition.

Sincerely,
Richard Goldstein

@sweetwater9
My daughter also found that a histamine load caused an increase in symptoms. She has followed a very rigid exclusion diet of only a few foods, and the histamine load dropped w/in a few days relieving her symptoms. Following the diet, and adding one food at a time, has allowed her to gradually increase her food choices. Check histamine loading and see what is recommended. She seems to be very sensative to excessive histamines. Good luck.

I discovered that I have Mold Illness and not Long COVID. Much longer story, but there are many crossover symptoms. My symptoms began in November 2021. Due to the lack of knowledge of both across the medical community it is very difficult for medical professionals to diagnose/discover and treat. I am about 6 weeks into what is supposed to be a 6 month treatment regimen and feeling better. 4+ years later I will take the win.

@rgoldstein909 definitely have the good days and bad days. It makes it difficult to plan my life because I never know if I will be up to doing what I thought I was going to do that day. I have overwhelming exhaustion, tinnitus, panic and anxiety, insomnia and unrefreshing sleep, nasal congestion. My first primary care doctor told me I was getting old and it was normal to be so tired, so just take a nap if I needed one. I found a new doctor who, when presented with all my symptoms, agreed that I had long covid and I am now getting some treatment. We started with a valacyclovir/celebrex combo that has helped me somewhat. I also do many wellness good habits like coherence breathing, yoga, walking, intermittent fasting, nasal saline washes, probiotics. I am getting better but not back to my former energetic self yet. Hang in there.

@rgoldstein909 Most of the LC people that I have talked with have the fluctuating energy levels and have to implement intense pacing....really intense pacing. I take several rests during the day so I don't run out of energy. If you overdo it one day, it usually will affect you the next day or the day after. I have intense post exercise malaise...that can last hours to days but am better on Low Dose Naltrexone (LDN). It does give me additional energy and is regulating my immune system so the rashes are fewer and farther between...and shortness of breath/palpitations are less. LDN also takes away about 50% of my pain from the constant and chronic LC induced inflammation.

@quickstepper

Thank You for the response and info.

I got Covid last March and have had long Covid since then. My Dr. does believe it exists and for that I have been most thankful. His belief is that I will get better and that has been true. I went through periods of being so dizzy, brain fog, anxiety, shortness of breath and fatigue that I could hardly function at all. I was getting afraid to drive somedays as my focus, attention, and alertness were all off plus being dizzy. If I tried cooking something I would have to sit down 3-4 times because I was too dizzy to stand for more than couple minutes. I use the word Dizzy but that is not quite accurate to the experience. I am sure some of you know what I mean. I told my Dr. once I feel like my brain is swollen doesn't fit in my head. Thick headed? Woozy? Would need a 2 hour nap every afternoon I would be so wiped out. Now I have good days where I feel totally normal. I chose not to take anything to treat symptoms as the options of different supplements, medications etc. etc. to try seemed too overwhelming. My challenge now is when I have a "good" day, I believe I might be well finally but find that's not the way it is. But I am improving so try be hopeful. Today I took my dog to the park and walked which I had not been able to do for a long time. I am encouraged. To all of you, try to stay hopeful and be sure to have a Doc who believes you.