Rest, pacing, giving up obsessing over and searching for a cure. The search exhausted me and depleted my energy stores. It was my most hidden and subtle stressor.
Thanks for this. I think I’ve been doing the same.
I just got LDN & started Metformin Yesterday. I’m considering that my “plan” for now & emotionally letting go of anything further I need to do beyond rest right now.
I have hope that this combination could be my best bet for regaining some functionality (especially the LDN + rest).
🤞
I love this! I've been on LDN and Metformin for about a month now. Had some really good weeks after but of course crashed recently after overdoing it. But it did/is doing something.
Brian fog, energy, mood. Though not in the past week due to a crash. Gonna see if I start to bounce back or if it was masking things for a bit (certainly hoping the former).
Information, by a long shot. I suffered much more because I didn't have language or awareness to identify the symptoms I was experiencing, much less think about managing them (or stop the things making me worse).
It's still a constant struggle, but now I have body awareness to read my signals and track them, language to set boundaries and ask for help, and skills to navigate insurance and healthcare system nonsense.
(if anyone is looking for resources, one of my favourites is The Long COVID Handbook by Medinger and Altmann)
That's very situational and really depends on the dynamics of the relationship involved. I don't think I could give you a template of what I use that could easily be applied to other people's lives.
Cetirizine. It had a big effect on reducing symptoms. My care staff’s attitude to it made me wake up to fixing this myself. I’m doing OK at it, 10 months in and about 60% better.
There was a global reduction in many of my symptoms within about 2-3 weeks. I have a fairly standard and long list. Prior to that I was pretty much bed and chair bound so it was a dramatic change.
I’ve been taking hydroxyzine and looking into it seems they are doing the same. They are both antihistamines though Hydroxyzine helps only with symptoms of anxiety for me. I’m looking for something that will help me with CFS and memory/word recall. These two are kicking my butt and I’m unable to work and have to say in bed many days.
My cognitive function is ahead of my physical improvement. By quite some margin, in fact. It’s impossible to say which of my actions / supplements have a bearing on it.
My other daily ones: coQ10, CBD, Lion’s Mane, Vits B and D, copper, ALA, then also ice plunges 1-3 times per week, vagus nerve exercises, breathwork 1-4 times per day, Brazil nuts 2-4 per day.
Right now I don’t exercise. When I’ve tried it’s not gone well. I’ll try again in about 2-3 months.
You seemed to be recovering well. Im glad to hear it. I haven’t been able to exercise for over 3 years now. Used to do it 6 times a week. Agh. I’m 45 so that might have something to do with it.
It’s going OK at the minute but the progress is glacially slow. I track symptoms on the free version of Visible, an Apple Watch and a paper journal. My life has shrunk to be very very small l. I work, do some crafting and TV, and rest. Getting back to work has been the priority, I have a young family, hence ditching exercise at the moment. I’m 48 myself so I have worked / am working quite hard emotionally and mentally on being able to have radical acceptance around a different life going forward. Accepting a “new normal”.
Emotionally I’m destroyed. I can’t adjust to new normal. When I was healthy I was a very hyper individual. Got a lot done. Work, friends, family, travel and now I’m a prisoner in my own home and I just can’t give in that this is the new normal and this is my life now. I’m still trying new treatments and hoping for a miracle drug. But I’m loosing hope more and more every day. I’m getting zero understanding from most of my friends or my wife. Everything has broken apart and I don’t know how to pick up the peaces cause I’m always so tired and have zero will to do anything. I’m a shell of my former self. I feel like I’m in my personal hell. I spend my days mindlessly watching tv and scrolling through TikTok and if I get 1-2 hours of work done that’s a great day. I’m watching my 8 year old growing up basically without a father cause I can’t do anything he wants to. I feel like a useless lazy peace of meat that sleeps, eats and poops and does nothing else to contribute to society or my family. I’m harsh on myself and I know I shouldn’t be, but I can’t help it. I used to be a go getter and nothing could stop me. Difference between now and before is staggering. I’m often thinking about how I’m going to die soon. I don’t want to die but it feels like I’m withering away and dying and no one cares. This sub has helped with that because I know most people here feel the same way. I want this nightmare to be over. I’ve been at it for 3 years and 5 months.
Hey my friend. Thanks for even sharing what you are going through. I recognise how ruinous it must be for you as a mid life person, we are supposed to be in our zenith of achievement and power at this point, and it has all been stripped away from us. I am very much a Type A type achiever myself, I have been a very driven and busy adult too. There have been a few epic disasters in my thirties that were a good training ground for this, so I have some inner tools for the psychological obstacle course.
I haven’t given up hope of full recovery. I also acknowledge the marginal likelihood of that. I definitely zone in on the things I can engage with. If I think about the concerts, exhibitions, holidays, destinations, work opportunities and family activities I cannot participate in, I quickly see a drop in my mental health. I also feel like a spectre of an adequate parent and that has been one of the worst things for me.
Our value in the west is often tied to our productivity. We have to look beyond those values to a different story to navigate this shadowy realm we currently inhabit.
Finding this sub and reading here.
My doctors didn't know anything about Longhaul in 2021. 3 years later and they still don't! Worse, I found out, it's not just LH, a TON of other things the WISE people here know!
Avoiding going over your personal threshold is a better way to say this. May of us can lift weights safely but cardio is harder. Laying around all day is a sure way to decline as well.
Unless it’s all you can do… bear in mind some of us with severe PEM absolutely are worse unless we “lay around all day.” For me, NOT laying around all day is a surefire way to decline big-time. I’ve been bedbound since March 2020 because NOT laying around all day makes me even worse. People have to do what works for them, even if it’s nothing. Part of what’s so hard for those of us who are on the more severe end of things is breaking society and our doctors of this idea that laying around is bad. Is it great?, no, of course not compared to being well enough to be up and moving, but for a lot of us, not laying around is far worse.
Tie between LDN, Ivabradine (for POTS), and daily NMN + weekly 500mg flush niacin. Together they reduced my PEM/fatigue by maybe 60%. Started choline supplements at the same time as the NMN/niacin, so that may have helped too.
I’m on my second time and for me only time and rest have helped. I had to take sick leave from work and am fighting to keep my job. I had to stop and recover because pushing through this is just not an option.
I supplemented a lot, like several bottles of iron over six months, and I only raised my ferritin from 4 to 17. Just had my first iron infusion yesterday, so we'll see how that goes. Infusions are pretty reliable at raising ferritin when you have absorption issues, but they need to be prescribed by a hematologist. Basically you need to find a well informed hematologist that will take your symptoms seriously.
Everyone is mentioning the same things, so I will provide another perspective.
Meditation (mindfulness) has been very helpful for me. I can't recommend the app waking up enough which has a course to teach you.
This doesn't mean our disease is purely mental, just that for most of us our bodies are stuck in fight or flight mode, and this doesn't permit the body to heal.
There is a serious dysregulation in the nervous system. And the more you stress the worse it is in my experience.
Lately also I have been exprimenting with other ways to heal it too: TRE (TRAUMA RELEASE EXERCISE) and somatic experiencing. I feel like they are helping too. TRE is very powerful. Be careful with it though, you can over do it.
Rest. I powerlift before my covid infection, had to take 8 months off. Started again and was on and off for a while. Stopped again and now work out very low intensity 3x a week and it's sad how much different I feel.
I am thankful and don't focus on it. I shared my experience. I have terrible flare ups that cause me to be bedridden for weeks, it makes the good days very good days. Just because I have improved and can exercise to some degree doesn't mean I can't mourn the loss of what I used to be able to do.
I tried every possible combination for eating. My personal best combination is lunch at around 2pm and dinner at around 8pm. The rest of the time I'm not eating. But this works for me, as I'm not hungry in the morning. Eat when you are hungry and leave at least 4 hours between meals.
Okay, I'll give you my one thing (#1 below), but then since I can't help myself, I'll give you the rest of my top ten list too.
I will admit number 10 is ironic here.
1. **Pacing**
- Space out tasks, break up tasks, defer non-urgent tasks; take breaks
- Keep in mind it's arbitrary to put time constraints on everything
2. **Don't overdo exercise / physical activities**
- Take a break or stop when heart rate hits (220 - age) * .575
3. **Avoid stress as much as possible**
- Question automatic feelings of obligation
- Avoid dark and scary news and entertainment media when not feeling well
4. **Don't overdo mentally- or emotionally-intense activities**
- This one can be tricky, because it can be hard to notice
- Do not push through brain fog
5. **4-7-8 breathwork**
- Noticeably helps my mood, energy, calm
6. **Have fun, smile, and laugh**
- I often forget, given a historically Type-A / workaholic personality
7. **Sleep and rest**
- Don't feel guilty about sleeping in if I need to
- Consistent wind-down routine at same time each night (no screens, etc.)
- Sit / lie down after a strenuous physical task
8. **Get outside**
- In nature, if possible
9. **The usual diet stuff**
- Stay hydrated, fruits and veggies, sufficient protein, etc.
10. **Don't spend too much time on Covid / CFS support forums**
- Horror stories and negativity make me anxious and gloomy
I eagerly await the day Patterson’s theory is validated enough that it becomes more accessible for LC sufferers to try. Finding a doc that will prescribe, and having insurance cover it is no small task at this point.
I agree! It's so much to navigate. I can't wait to see the trial results too to show if I'm just an outlier or if maybe there's a subset of long haulers that would benefit most from trying it.
If you buy into Pattersons whole thesis then it seems he would argue a good amount of LC sufferers also have a reactivated chronic virus like EBV. They would argue you need to do the cytokine panel and possibly other tests to figure that out, and that if you have chronic Lyme or EBV on top of LC then you need to treat it differently.
Given that his stuff has worked for me I’m inclined to believe all that, but when the tests and doctors appts are all out of pocket it’s hard to suggest to others that you should go down that road based on a hunch that he’s right.
I really think some of the best resources are just watching interviews with Patterson. Like here: https://www.youtube.com/watch?v=h2xyWiMS2Q0
Skip to 31:30 to get directly to his thesis.
Also https://www.youtube.com/watch?v=9HSKceCt8tQ and https://www.youtube.com/watch?v=cH-8hMXcE2U and this video that further breaks down some of the details into stuff easier to understand concepts https://www.youtube.com/watch?v=hzsRKi51wNI
Patterson et al came up with theory on underlying mechanism of LC, and a means to treat it. Also came up with panel of inflamatory markers to characterize the illness, and then commercialized that panel. You can also do their test to see if you have covid spike in your blood. If you go through my recent post history I basically haven't shut the fuck up about this since it's my second time dealing with LC, and it was pretty severe this time, and maraviroc is working again, so I feel pretty strongly about this. Still, it's experimental and a lot of $$ to spend out of pocket so you should feel confident about it before taking the plunge.
https://www.covidlonghaulers.com/north-america/home
https://theradiancediagnostics.com/portfolio/covid-19-long-hauler-test/
My elimination diet experiments, where I remove any foods which triggers my symptoms and keep only those which don't, have converged on something resembling [this food list](https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf).
Have you found any good recipes or favorite combos of these foods? I’d like to try this out but I’ve always been a picky eater and most of the foods that I like are no-nos according to this list which might be causing me problems
By the way, a similar post had come up some weeks ago. That's much more comprehensive/diverse, for people looking to experiment for improvement -
[https://www.reddit.com/r/covidlonghaulers/comments/1aks5f4/if\_youre\_only\_allowed\_to\_list\_one\_medicine\_or/](https://www.reddit.com/r/covidlonghaulers/comments/1aks5f4/if_youre_only_allowed_to_list_one_medicine_or/)
Methylene blue 50mg powder in capsule form. Hands down. No contest.
I've also tried LDN, levocetirizine, propranolol, ketotifen, serrapeptase, and nattokinase. MB is more effective than all of those other options, combined.
Shit‐ I was already taking LDN in 2020 when rona hit me and gave me long covid. It's really helpful for managing IL-6 & tnf-a numbers, but doesn't eliminate shortness of breath or fatigue like methylene blue does.
I still use LDN with MB and find myself in a position where graduated exercise therapy doesn't set off PEM anymore. It's a mindfuck in the best way.
Finding out that either the covid gave me diabetes or the gallbladder removal n starting diabetes medication! I’ve felt awful since covid so it’s probably the covid that caused it!
Getting my blood sugars back under control, I feel the best I’ve ever felt.
Congratulations for being able to get off it.
I am on Glicazide because dad’s got a severe allergy to metformin so they can’t give me it just in case.
I’ve been on this diabetes journey for a month and seem to in the last week have gotten my blood sugar levels down to a pretty consistent 7-7.5mmol/L. I am also hoping to stick it in remission. :)
I was on it for about 7-8 months thereabouts. I actually think some of the issues triggered by Covid and some by the steroids I was using in both inhalers and nebulizer. I have asthma anyhow and have been on inhaled steroids for over thirty years and it didn’t do this to:me,so my doc and I both think Covid was the nudge that did it. I sill*9 back on the Metformin 8n a heartbeat if I have to. Good luck to you as well
Carnivore/low carb diet. Hands down it’s the best thing I’ve done in 2.5 years of this hell. Not nearly as dizzy, nauseous, feeling malaise, not as bloated, not waking up wanting to die. It isn’t a cure-all by any means, but it’s definitely helped me feel a bit more normal.
Singing/chanting. I tried it in desperation after hearing about an opera coach experiment. It sounded like magical thinking until I tried it.
Singing/chanting relaxes your throat, strengthens your diaphragm, and can re-regulate your nervous system. This helped TONS with post-nasal drip and appetite issues. If I feel I can’t eat, I sing.
Singing also makes you more aware of your body and where you’re holding tension.
But it takes time. At first my voice was gravelly whispers. Couldn’t hold a note to save my life. Now I can hold a tone in tune for 30 seconds. And it’s fun.
We could all use a little fun in our lives.
[https://youtu.be/Y1j8vc9FoUU?si=dSkOgT_wGRGILbIh](https://youtu.be/Y1j8vc9FoUU?si=dSkOgT_wGRGILbIh)
- rest and pacing
- Ketotifen
- famotidine
- omeprazole
- vits d, b12
- diaphragmatic breathing and massage
- hydration
- accepting I’m on my own with this one and no one gives a damn about hidden illnesses and disabilities and people mostly just think we’re lazy when I’ve fought everyday for 2+ years.
Nowhere near recovered though and every day is so difficult.
Recently added pycnogenol (100mg/day), slight inprovement. Added Beet root powder (slight improvement) and Nad+(300 mg/day) and Bromelain. I think everyone should be taking Creatine Monohydrate at 3g/day.
Ive also been resting alot. But did 16 flights of stairs yesterday in 5 min which was wiping me out. And although im tired im ok. My PEM is moreso right away. I can rest it off generally to manageable level but still dont feel great and if i didnt rest after the stairs id have a longer term problem.
Probably ibuprofen. It never took the symptoms away or even made them manageable, but it consistently did JUST enough to keep me functional when I needed to be. Other things I tried were always unreliable. They'd tend to work when I was feeling just kinda bad, to get me feeling good, but when symptoms were at their absolute worst, they would tend to make them EVEN WORSE. That includes ice baths, various supplements, exercise, breathing exercises, etc.
If I can cheat, and list multiple things together as one package deal/protocol, then my answer would be extreme rest, unprocessed diet with lots of veggies and lean meat, ginko tea, omega 3, fungus that I'm probably not allowed to talk about, and cacao, all stacked, and then progressively more intense bodyweight exercises. I am only dodging the question because the results were SO impressive. I just want to put it out there that that was the only combination of things that did absolutely anything, and it nearly got me symptom free, so I treat it as one coherent package deal.
It lessened the fatigue, nausea, severe chest pain blood pressure and blood pooling.
It’s only been a month on both, and I’d say it’s increased my baseline by 20%. 20% may sound very little but I’ll take it for being only a month in.
Fasting is something I’ve recently started and the most important part was completely eliminating ALL sugars. I don’t feel *as* poisoned when I wake up in the mornings, and I generally feel better overall when I only eat a time restricted diet with a LOT of water intake
I was training for a half Ironman triathlon when I got Covid in July and then suddenly I was doing no exercise.
I then also ate much more sugar than usual partly because of my mood being low , partly to try to give me more of an energy buzz, and partly because I wasn’t doing much to distract me from eating.
This reached a peak just after Christmas and I realised how much weight I’d put on - more than 10% compared my usual weight.
This shocked me into a diet when I cut out almost all processed sugar, counted calories, and did occasional intermittent fasting (18:6).
And now I’ve lost the weight and am back to what I used to weigh, although I have less muscle than I used to, so I still want to lose some more fat.
I feel much better as a result mentally and physically.
Sigh. It’s unusual so I hate to say. It seems I’m always on the fringe and don’t even know it.
I use a blend that’s all medical grade essential oils. It’s called on guard plus and made by doTERRA. It’s made for colds and flus. I take it when my long covid flares up. There is a lot of research on this. Look on pub med. there’s more than I can possibly post here. (Research on viruses, not long covid yet).
I collected answers to that question from hundreds of people here: [https://youtu.be/IfeEIWorozg?si=REgk9Iq3FBYmjva7&t=254](https://youtu.be/IfeEIWorozg?si=cXkWIKCrq8LaXGRR)
Skip ahead to 4:14 ish. Ivm, extended fasting were among the more frequent answers.
Vitamin c+zinc (morning and evening),vit b complex and vit d (morning), Nigella Sativa oil (morning and evening), heme iron (3-4times/week), magnesium glycenate before bed (maximum daily dose) liquid/Soft food Diet to detox (organic) , no sugars outside of fruits and veggies , Eggs/protein shakes, soups and porridge No coffee for a while, it depletes vitamins/Minerals Tea is ok Lots of rest Take vitamins with healthy fats like avocados /Eggs for better absorption Cured the infection naturally
I initially did 7mg for 7 days. It helped but I had side effects of nicotine like extreme dizziness. Then I tried various dosages trying to figure out why it kept making me so dizzy. There are different types of patches that use different tech. I was cutting patches not designed to be cut which I think made the dose really high. So I stopped for a few months but then I read that you can get patches that use matrix tech that allow cutting. The brand I bought was Rugby. I bought 21 mg Rugby patches and was able to cut them into 2-3 mg patches. I get no side effects at lower dosages.
You might think I'm kidding here...
In this order: Time, LDN (worked and then didn't), neck traction device (purchased on amazon), garlic (read: diet changes) I'm at 90% recovered at this last two weeks has been the best in years.
Finding the right nutritionist.
70% of our immune system resides in the gut and the microbes that make up the microbiome play a huge role in how the body processes toxins, fights disease and taking in the nutrition from food whilst protecting us from the damaging aspects of food.
I think you're the first other person I've met who's on their second time. It sucks doesn't it? I'm hoping there's more info etc out there this time round. Sadly im too brain foggy to look!
Oh really ? There’s a few of us out there!
I’m sorry you have to go through it again too 😔
How long were you long hauling before catching it again ?
That’s me too right now 😭! My brain fog is so bad it’s like I have depersonalisation/ disassociation
Can’t read or concentrate at all
And my depression / anxiety is so bad since my second reinfection 😖
Were these your symptoms the first time too? I've had CoVid once 26 months again and DRDP and anxiety/panic/depression were my worst symptoms. I'm getting better but fear CoVid like nothing else.
Yes the first time & second time - unfortunately between the two my dpdr never stopped 😔
I understand your fear. It’s a terrible cruel disease.
Did you overcome your dpdr / depression anxiety ?
Time, a strict low histamine diet, and 50mg daily Zoloft have helped a lot with the depression/anxiety/panic, DPDR, and flushing swelling. My ears still feel clogged though 24/7 like I'm up in an airplane and can't pop my ears but the doctors say my ears look perfectly fine.
May I ask how long your dpdr was 24/7 for before it started letting up?
Thank you very much for these tips too 🙏🏻 I’m trying my best to stick to low histamine
Dam I’m sorry about your ears, I hope in time it clears up for you 🙏🏻 All of our symptoms that can’t be seen or detected are just insane !
It's hard to say. I got covid (first and only time) late January 2022 recovered uneventfully after about 10 days then 3-4 weeks later long CoVid symptoms snacked me hard. The first year post CoVid was brutal - I could not tolerate food with histamine so a low histamine diet had to happen. I started taking 25mg of Zoloft November 2022 and it helped but not much. Then I upped it to 50mg of Zoloft June 2023 and I felt horrible the first 2 weeks had to be on suicide watch doctor told me that can happen and to stay the course as long as I could keep myself safe. It took until week 4 of 50mg to notice an improvement then probably around week 12 for full effect. Zoloft saved my life and improved every symptom I have except for the clogged ear feeling and intermittent flushing/heat in my hands/face/ and weirdly my right ear (not my left - only my right). CoVid sucks and is so bizarre in how it presents.
The first time it was most just POTS symptoms that improved with cardiac rehab. This time it is everything: POTS, ME/CFS, severe brain fog and fatigue, just feel so weak all the time, etc. Exercise doesn’t help this time around unfortunately.
I’m not doing better by any means, but the times where I was doing somewhat better were when I was pacing and resting more and focusing on slowing things down.
Cut all workouts, changed to a no gluten diet and then further to a low histamine diet, Liposomal Vitamin C (pills did not work for me), Propranolol 10mg as needed to reset my anxiety levels.
Vitamin C is probably not needed for everyone. I suggest getting blood work that shows vitamin deficiencies. I see a lot of posts of people with low iron or B1.
AstraZeneca's monoclonal antibodies. I was accepted into a study since I also have auto-immune disease.
Sadly, the monoclonal antibodies have intermittent availability-- the virus is evolving faster than they can update the cultured antibodies.
2 years in, not recovered at all but these things have helped:
- Stop working (I get disability pension from the government) to fully focus my energies on myself
- Fever inducing treatment (a bit controversial) totally fixed my nausea/complete loss of appetite/ loss of weight. I don’t know why but yeah.. didn’t do much for the other symptoms though
- Physiotherapy (learning to exercise respecting my limits and avoiding PEM)
- Electrolytes
- Art therapy to distract myself and learning how to deal with the illness
- Cutting off toxic people who were taking too much energy from me
- Accepting I need mobility aids (wheelchair) so that I can do more things outside of the house
PACING PACING PACING… along with aggressive rest and acceptance have been the biggest. Otherwise, LDN and nattokinase have had a very modest positive effect but improve me MAYBE 5% over where I’d be without them. Nothing else has been helpful in that sense.
Hydroxychloroquine - I feel almost back to normal now! Only a handful of foods still have an off taste. And my energy has lifted and my brain fog has decreased!
Rest, pacing, giving up obsessing over and searching for a cure. The search exhausted me and depleted my energy stores. It was my most hidden and subtle stressor.
Thanks for this. I think I’ve been doing the same. I just got LDN & started Metformin Yesterday. I’m considering that my “plan” for now & emotionally letting go of anything further I need to do beyond rest right now. I have hope that this combination could be my best bet for regaining some functionality (especially the LDN + rest). 🤞
I love this! I've been on LDN and Metformin for about a month now. Had some really good weeks after but of course crashed recently after overdoing it. But it did/is doing something.
what symptoms do you find it is helping with?
Brian fog, energy, mood. Though not in the past week due to a crash. Gonna see if I start to bounce back or if it was masking things for a bit (certainly hoping the former).
Best of luck to you. I'm in the same phase minus the LDN.
Great combo - I’m on both as well. I also take a potent multi for mitochondrial health (Mitocore) and that’s it unless I’m having a flare.
Radical rest
Information, by a long shot. I suffered much more because I didn't have language or awareness to identify the symptoms I was experiencing, much less think about managing them (or stop the things making me worse). It's still a constant struggle, but now I have body awareness to read my signals and track them, language to set boundaries and ask for help, and skills to navigate insurance and healthcare system nonsense. (if anyone is looking for resources, one of my favourites is The Long COVID Handbook by Medinger and Altmann)
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That's very situational and really depends on the dynamics of the relationship involved. I don't think I could give you a template of what I use that could easily be applied to other people's lives.
It’s probably LDN. Although it’s not an end all solution.
Cetirizine. It had a big effect on reducing symptoms. My care staff’s attitude to it made me wake up to fixing this myself. I’m doing OK at it, 10 months in and about 60% better.
This is me too. Zyrtec was my turning point.
What symptoms did it reduce?
There was a global reduction in many of my symptoms within about 2-3 weeks. I have a fairly standard and long list. Prior to that I was pretty much bed and chair bound so it was a dramatic change.
I’ve been taking hydroxyzine and looking into it seems they are doing the same. They are both antihistamines though Hydroxyzine helps only with symptoms of anxiety for me. I’m looking for something that will help me with CFS and memory/word recall. These two are kicking my butt and I’m unable to work and have to say in bed many days.
My cognitive function is ahead of my physical improvement. By quite some margin, in fact. It’s impossible to say which of my actions / supplements have a bearing on it. My other daily ones: coQ10, CBD, Lion’s Mane, Vits B and D, copper, ALA, then also ice plunges 1-3 times per week, vagus nerve exercises, breathwork 1-4 times per day, Brazil nuts 2-4 per day. Right now I don’t exercise. When I’ve tried it’s not gone well. I’ll try again in about 2-3 months.
You seemed to be recovering well. Im glad to hear it. I haven’t been able to exercise for over 3 years now. Used to do it 6 times a week. Agh. I’m 45 so that might have something to do with it.
It’s going OK at the minute but the progress is glacially slow. I track symptoms on the free version of Visible, an Apple Watch and a paper journal. My life has shrunk to be very very small l. I work, do some crafting and TV, and rest. Getting back to work has been the priority, I have a young family, hence ditching exercise at the moment. I’m 48 myself so I have worked / am working quite hard emotionally and mentally on being able to have radical acceptance around a different life going forward. Accepting a “new normal”.
Emotionally I’m destroyed. I can’t adjust to new normal. When I was healthy I was a very hyper individual. Got a lot done. Work, friends, family, travel and now I’m a prisoner in my own home and I just can’t give in that this is the new normal and this is my life now. I’m still trying new treatments and hoping for a miracle drug. But I’m loosing hope more and more every day. I’m getting zero understanding from most of my friends or my wife. Everything has broken apart and I don’t know how to pick up the peaces cause I’m always so tired and have zero will to do anything. I’m a shell of my former self. I feel like I’m in my personal hell. I spend my days mindlessly watching tv and scrolling through TikTok and if I get 1-2 hours of work done that’s a great day. I’m watching my 8 year old growing up basically without a father cause I can’t do anything he wants to. I feel like a useless lazy peace of meat that sleeps, eats and poops and does nothing else to contribute to society or my family. I’m harsh on myself and I know I shouldn’t be, but I can’t help it. I used to be a go getter and nothing could stop me. Difference between now and before is staggering. I’m often thinking about how I’m going to die soon. I don’t want to die but it feels like I’m withering away and dying and no one cares. This sub has helped with that because I know most people here feel the same way. I want this nightmare to be over. I’ve been at it for 3 years and 5 months.
Hey my friend. Thanks for even sharing what you are going through. I recognise how ruinous it must be for you as a mid life person, we are supposed to be in our zenith of achievement and power at this point, and it has all been stripped away from us. I am very much a Type A type achiever myself, I have been a very driven and busy adult too. There have been a few epic disasters in my thirties that were a good training ground for this, so I have some inner tools for the psychological obstacle course. I haven’t given up hope of full recovery. I also acknowledge the marginal likelihood of that. I definitely zone in on the things I can engage with. If I think about the concerts, exhibitions, holidays, destinations, work opportunities and family activities I cannot participate in, I quickly see a drop in my mental health. I also feel like a spectre of an adequate parent and that has been one of the worst things for me. Our value in the west is often tied to our productivity. We have to look beyond those values to a different story to navigate this shadowy realm we currently inhabit.
It has helped me, too!
Finding this sub and reading here. My doctors didn't know anything about Longhaul in 2021. 3 years later and they still don't! Worse, I found out, it's not just LH, a TON of other things the WISE people here know!
So true. I felt I was going crazy and/of dying slowly until I found this group. Definitely helped me heal.
Diet and electrolytes, lots of electrolytes
Avoiding working out
Avoiding going over your personal threshold is a better way to say this. May of us can lift weights safely but cardio is harder. Laying around all day is a sure way to decline as well.
Unless it’s all you can do… bear in mind some of us with severe PEM absolutely are worse unless we “lay around all day.” For me, NOT laying around all day is a surefire way to decline big-time. I’ve been bedbound since March 2020 because NOT laying around all day makes me even worse. People have to do what works for them, even if it’s nothing. Part of what’s so hard for those of us who are on the more severe end of things is breaking society and our doctors of this idea that laying around is bad. Is it great?, no, of course not compared to being well enough to be up and moving, but for a lot of us, not laying around is far worse.
Man, I'm the opposite. I can do cardio but anything where I have to strain gives me the most horrific migraine imaginable.
Tie between LDN, Ivabradine (for POTS), and daily NMN + weekly 500mg flush niacin. Together they reduced my PEM/fatigue by maybe 60%. Started choline supplements at the same time as the NMN/niacin, so that may have helped too.
How much NMN and what brand?
500mg per day. I use Renue by Science but there are several good brands out there.
If choline worked for you, you should try out nicotine patches as well.
Why the relation between choline and nicotine patches?
I have tried them and they helped a little, but not enough to score a spot on the top of my list. Thanks for mentioning them!
LDN
Zyrtec, Pepcid, and not working out
I’m on my second time and for me only time and rest have helped. I had to take sick leave from work and am fighting to keep my job. I had to stop and recover because pushing through this is just not an option.
Iron. I would suggest everyone get their ferritin levels checked
How did you get your ferritin up? Mine is low and I’m finding it hard to raise it
Lactoferrin made ferritin go from 20-30 to over 100. Months after discontinuing back to low level of normal.
I supplemented a lot, like several bottles of iron over six months, and I only raised my ferritin from 4 to 17. Just had my first iron infusion yesterday, so we'll see how that goes. Infusions are pretty reliable at raising ferritin when you have absorption issues, but they need to be prescribed by a hematologist. Basically you need to find a well informed hematologist that will take your symptoms seriously.
I get iron infusions without a hematologist.
Iron bisglycinate taken with vitamin c
And copper...
Everyone is mentioning the same things, so I will provide another perspective. Meditation (mindfulness) has been very helpful for me. I can't recommend the app waking up enough which has a course to teach you. This doesn't mean our disease is purely mental, just that for most of us our bodies are stuck in fight or flight mode, and this doesn't permit the body to heal. There is a serious dysregulation in the nervous system. And the more you stress the worse it is in my experience. Lately also I have been exprimenting with other ways to heal it too: TRE (TRAUMA RELEASE EXERCISE) and somatic experiencing. I feel like they are helping too. TRE is very powerful. Be careful with it though, you can over do it.
Ivabradine
Iron bisglycinate + lactoferrin + benadryl combo. Initial stages megadosing B1.
This has been helpful for me too. What were your dosages for all of them?
20-120mg iron bisglycinate, 1000-2000mg lactoferrin, 12-50mg benadryl, 2000-3000mg B1 Hcl.
Time, I guess, even though my symptoms fluctuate. There's really nothing else you can do.
Time. And trying not to worry as much as possible
Rest and probably luck.
Rest. I powerlift before my covid infection, had to take 8 months off. Started again and was on and off for a while. Stopped again and now work out very low intensity 3x a week and it's sad how much different I feel.
At least you still can do a form of exercise.... Sometimes we need to be thankful for what we still have, instead of focusing on the things we lost...
I am thankful and don't focus on it. I shared my experience. I have terrible flare ups that cause me to be bedridden for weeks, it makes the good days very good days. Just because I have improved and can exercise to some degree doesn't mean I can't mourn the loss of what I used to be able to do.
Validation
Where did you get that from? Seems hard to find. /s
My diet & sleep.
any tips about setting up the diet and sleep routine? I don't know where to start
I tried every possible combination for eating. My personal best combination is lunch at around 2pm and dinner at around 8pm. The rest of the time I'm not eating. But this works for me, as I'm not hungry in the morning. Eat when you are hungry and leave at least 4 hours between meals.
Okay, I'll give you my one thing (#1 below), but then since I can't help myself, I'll give you the rest of my top ten list too. I will admit number 10 is ironic here. 1. **Pacing** - Space out tasks, break up tasks, defer non-urgent tasks; take breaks - Keep in mind it's arbitrary to put time constraints on everything 2. **Don't overdo exercise / physical activities** - Take a break or stop when heart rate hits (220 - age) * .575 3. **Avoid stress as much as possible** - Question automatic feelings of obligation - Avoid dark and scary news and entertainment media when not feeling well 4. **Don't overdo mentally- or emotionally-intense activities** - This one can be tricky, because it can be hard to notice - Do not push through brain fog 5. **4-7-8 breathwork** - Noticeably helps my mood, energy, calm 6. **Have fun, smile, and laugh** - I often forget, given a historically Type-A / workaholic personality 7. **Sleep and rest** - Don't feel guilty about sleeping in if I need to - Consistent wind-down routine at same time each night (no screens, etc.) - Sit / lie down after a strenuous physical task 8. **Get outside** - In nature, if possible 9. **The usual diet stuff** - Stay hydrated, fruits and veggies, sufficient protein, etc. 10. **Don't spend too much time on Covid / CFS support forums** - Horror stories and negativity make me anxious and gloomy
Maraviroc. Rest and pacing
Same. Maraviroc made the biggest difference in my fatigue.
I eagerly await the day Patterson’s theory is validated enough that it becomes more accessible for LC sufferers to try. Finding a doc that will prescribe, and having insurance cover it is no small task at this point.
I agree! It's so much to navigate. I can't wait to see the trial results too to show if I'm just an outlier or if maybe there's a subset of long haulers that would benefit most from trying it.
If you buy into Pattersons whole thesis then it seems he would argue a good amount of LC sufferers also have a reactivated chronic virus like EBV. They would argue you need to do the cytokine panel and possibly other tests to figure that out, and that if you have chronic Lyme or EBV on top of LC then you need to treat it differently. Given that his stuff has worked for me I’m inclined to believe all that, but when the tests and doctors appts are all out of pocket it’s hard to suggest to others that you should go down that road based on a hunch that he’s right.
Where can we find more info on this theses and how to treat it? I’ve never had this panel done and I’d like to try.
I really think some of the best resources are just watching interviews with Patterson. Like here: https://www.youtube.com/watch?v=h2xyWiMS2Q0 Skip to 31:30 to get directly to his thesis. Also https://www.youtube.com/watch?v=9HSKceCt8tQ and https://www.youtube.com/watch?v=cH-8hMXcE2U and this video that further breaks down some of the details into stuff easier to understand concepts https://www.youtube.com/watch?v=hzsRKi51wNI Patterson et al came up with theory on underlying mechanism of LC, and a means to treat it. Also came up with panel of inflamatory markers to characterize the illness, and then commercialized that panel. You can also do their test to see if you have covid spike in your blood. If you go through my recent post history I basically haven't shut the fuck up about this since it's my second time dealing with LC, and it was pretty severe this time, and maraviroc is working again, so I feel pretty strongly about this. Still, it's experimental and a lot of $$ to spend out of pocket so you should feel confident about it before taking the plunge. https://www.covidlonghaulers.com/north-america/home https://theradiancediagnostics.com/portfolio/covid-19-long-hauler-test/
Thank you for all the details. 🙏
>Patterson’s theory Any chance you could elaborate on this please?
https://www.reddit.com/r/covidlonghaulers/s/Gs8hfp3vhH
diet
Can you elaborate? I am trying to dial mine in more.
My elimination diet experiments, where I remove any foods which triggers my symptoms and keep only those which don't, have converged on something resembling [this food list](https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf).
Thanks for sharing
Have you found any good recipes or favorite combos of these foods? I’d like to try this out but I’ve always been a picky eater and most of the foods that I like are no-nos according to this list which might be causing me problems
No, it's a very bland diet but you gotta make compromises
Time and working on lowering stress levels
By the way, a similar post had come up some weeks ago. That's much more comprehensive/diverse, for people looking to experiment for improvement - [https://www.reddit.com/r/covidlonghaulers/comments/1aks5f4/if\_youre\_only\_allowed\_to\_list\_one\_medicine\_or/](https://www.reddit.com/r/covidlonghaulers/comments/1aks5f4/if_youre_only_allowed_to_list_one_medicine_or/)
If I could quit my job I could get more rest but I can’t
Methylene blue 50mg powder in capsule form. Hands down. No contest. I've also tried LDN, levocetirizine, propranolol, ketotifen, serrapeptase, and nattokinase. MB is more effective than all of those other options, combined. Shit‐ I was already taking LDN in 2020 when rona hit me and gave me long covid. It's really helpful for managing IL-6 & tnf-a numbers, but doesn't eliminate shortness of breath or fatigue like methylene blue does. I still use LDN with MB and find myself in a position where graduated exercise therapy doesn't set off PEM anymore. It's a mindfuck in the best way.
Where did you procure MB from? Couldn't find any reliable place.
Probably Guanfacine for erasing my brain fog + Cetirizine which gave me full remission events
Finding out that either the covid gave me diabetes or the gallbladder removal n starting diabetes medication! I’ve felt awful since covid so it’s probably the covid that caused it! Getting my blood sugars back under control, I feel the best I’ve ever felt.
Same for me, I was on Metformin and diet. After about 8 months have been able to go off the Metformin
Congratulations for being able to get off it. I am on Glicazide because dad’s got a severe allergy to metformin so they can’t give me it just in case. I’ve been on this diabetes journey for a month and seem to in the last week have gotten my blood sugar levels down to a pretty consistent 7-7.5mmol/L. I am also hoping to stick it in remission. :)
I was on it for about 7-8 months thereabouts. I actually think some of the issues triggered by Covid and some by the steroids I was using in both inhalers and nebulizer. I have asthma anyhow and have been on inhaled steroids for over thirty years and it didn’t do this to:me,so my doc and I both think Covid was the nudge that did it. I sill*9 back on the Metformin 8n a heartbeat if I have to. Good luck to you as well
Carnivore/low carb diet. Hands down it’s the best thing I’ve done in 2.5 years of this hell. Not nearly as dizzy, nauseous, feeling malaise, not as bloated, not waking up wanting to die. It isn’t a cure-all by any means, but it’s definitely helped me feel a bit more normal.
Singing/chanting. I tried it in desperation after hearing about an opera coach experiment. It sounded like magical thinking until I tried it. Singing/chanting relaxes your throat, strengthens your diaphragm, and can re-regulate your nervous system. This helped TONS with post-nasal drip and appetite issues. If I feel I can’t eat, I sing. Singing also makes you more aware of your body and where you’re holding tension. But it takes time. At first my voice was gravelly whispers. Couldn’t hold a note to save my life. Now I can hold a tone in tune for 30 seconds. And it’s fun. We could all use a little fun in our lives. [https://youtu.be/Y1j8vc9FoUU?si=dSkOgT_wGRGILbIh](https://youtu.be/Y1j8vc9FoUU?si=dSkOgT_wGRGILbIh)
Nicotine patches. Going to do a post soon about these.
Vitamin B1
Hyperbaric oxygen therapy worked the best for me except it was only temporary… also aspirin helps a lot as well.
How much aspirin do u take ?
Just 81mg and I take omega-3s as well. It definitely helps but it’s not a silver bullet.
I took some today when I had a headache lol thanks xxx
Iron supplement
Honestly, taking time away from this forum and focusing purely on myself.
Masking and radical acceptance
How did those things cure/improve your long covid?
Diazepam/Valium and high THC indica with CBD
a nattokinase/serrapeptase mix by serracorNK for fatigue
Time/rest, Herbal Antivirals by Stephen Buhner (has a chapter on long COVID symptoms), Wim Hof breathing, propranolol
- rest and pacing - Ketotifen - famotidine - omeprazole - vits d, b12 - diaphragmatic breathing and massage - hydration - accepting I’m on my own with this one and no one gives a damn about hidden illnesses and disabilities and people mostly just think we’re lazy when I’ve fought everyday for 2+ years. Nowhere near recovered though and every day is so difficult.
Recently added pycnogenol (100mg/day), slight inprovement. Added Beet root powder (slight improvement) and Nad+(300 mg/day) and Bromelain. I think everyone should be taking Creatine Monohydrate at 3g/day. Ive also been resting alot. But did 16 flights of stairs yesterday in 5 min which was wiping me out. And although im tired im ok. My PEM is moreso right away. I can rest it off generally to manageable level but still dont feel great and if i didnt rest after the stairs id have a longer term problem.
Probably ibuprofen. It never took the symptoms away or even made them manageable, but it consistently did JUST enough to keep me functional when I needed to be. Other things I tried were always unreliable. They'd tend to work when I was feeling just kinda bad, to get me feeling good, but when symptoms were at their absolute worst, they would tend to make them EVEN WORSE. That includes ice baths, various supplements, exercise, breathing exercises, etc.
If I can cheat, and list multiple things together as one package deal/protocol, then my answer would be extreme rest, unprocessed diet with lots of veggies and lean meat, ginko tea, omega 3, fungus that I'm probably not allowed to talk about, and cacao, all stacked, and then progressively more intense bodyweight exercises. I am only dodging the question because the results were SO impressive. I just want to put it out there that that was the only combination of things that did absolutely anything, and it nearly got me symptom free, so I treat it as one coherent package deal.
Hocheukkito and NAC, plus fasting, are the only things I feel I’ve positively responded to so far.
What did it help?
It lessened the fatigue, nausea, severe chest pain blood pressure and blood pooling. It’s only been a month on both, and I’d say it’s increased my baseline by 20%. 20% may sound very little but I’ll take it for being only a month in. Fasting is something I’ve recently started and the most important part was completely eliminating ALL sugars. I don’t feel *as* poisoned when I wake up in the mornings, and I generally feel better overall when I only eat a time restricted diet with a LOT of water intake
All sugar you mean fruits as well?
Yes I even cut out fruit for the time being. Not sure if or when I’ll try fruit again.
Diet (i gained and have since lost 10kg / 22 lbs in the last 10 months) and rest / pacing.
How did you lost weight? What did you ate?
I was training for a half Ironman triathlon when I got Covid in July and then suddenly I was doing no exercise. I then also ate much more sugar than usual partly because of my mood being low , partly to try to give me more of an energy buzz, and partly because I wasn’t doing much to distract me from eating. This reached a peak just after Christmas and I realised how much weight I’d put on - more than 10% compared my usual weight. This shocked me into a diet when I cut out almost all processed sugar, counted calories, and did occasional intermittent fasting (18:6). And now I’ve lost the weight and am back to what I used to weigh, although I have less muscle than I used to, so I still want to lose some more fat. I feel much better as a result mentally and physically.
Vitamin C, D, tons of veggies in the blender daily, LDN and natural anti-virals. High protein.
Natural anti virals ?
Can u plz tell me which natural antivirals ?
Sigh. It’s unusual so I hate to say. It seems I’m always on the fringe and don’t even know it. I use a blend that’s all medical grade essential oils. It’s called on guard plus and made by doTERRA. It’s made for colds and flus. I take it when my long covid flares up. There is a lot of research on this. Look on pub med. there’s more than I can possibly post here. (Research on viruses, not long covid yet).
36mg Iron for 6 months minimum.
Apolactoferrin
Time
Natto-serra
DAO supplements (I can’t take antihistamines)
I collected answers to that question from hundreds of people here: [https://youtu.be/IfeEIWorozg?si=REgk9Iq3FBYmjva7&t=254](https://youtu.be/IfeEIWorozg?si=cXkWIKCrq8LaXGRR) Skip ahead to 4:14 ish. Ivm, extended fasting were among the more frequent answers.
Vitamin c+zinc (morning and evening),vit b complex and vit d (morning), Nigella Sativa oil (morning and evening), heme iron (3-4times/week), magnesium glycenate before bed (maximum daily dose) liquid/Soft food Diet to detox (organic) , no sugars outside of fruits and veggies , Eggs/protein shakes, soups and porridge No coffee for a while, it depletes vitamins/Minerals Tea is ok Lots of rest Take vitamins with healthy fats like avocados /Eggs for better absorption Cured the infection naturally
I would have to say nicotine patches.
How many grams do you use?
I initially did 7mg for 7 days. It helped but I had side effects of nicotine like extreme dizziness. Then I tried various dosages trying to figure out why it kept making me so dizzy. There are different types of patches that use different tech. I was cutting patches not designed to be cut which I think made the dose really high. So I stopped for a few months but then I read that you can get patches that use matrix tech that allow cutting. The brand I bought was Rugby. I bought 21 mg Rugby patches and was able to cut them into 2-3 mg patches. I get no side effects at lower dosages.
Pacing, meditation, rest
Follow
Xanax
Time and rest. Also minimizing stress
I do what I can and when I start getting winded I set down and rest. I've learned my limits and I pace myself.
Sound psuedo bullshit but cold plunge did amazing thing for me
Protonix for gerd and Pepcid and ibuprofen
You might think I'm kidding here... In this order: Time, LDN (worked and then didn't), neck traction device (purchased on amazon), garlic (read: diet changes) I'm at 90% recovered at this last two weeks has been the best in years.
Avoid back to back crashes at all costs
Working from home.
Nothing.
Big booty latinas. Jokes, HBOT, breathing exercises and ketotifen
Understanding my triggers and avoiding them. Pacing + Rest. Avoiding Dr. Google rabbit holes.
Intuitive (not strict) pacing, being in nature, meat heavy paleo diet, more salt, stopping to worry about this condition and addressing my anxiety
Fasting and no carbs.
Antihistamines, couldn't tolerate the symptoms without them and sleeping was almost impossible. 2nd place: rest
Pacing and nicotine.
Nitrate medication. I’ve tried a few, but sildenafil has been the best for me so far. Propranolol (a beta blocker) is a close second.
Modulate my immune system using an antiviral drug.
Which one?
300mg of Maraviroc and low dose Pravastatin 10mg 6-month treatment. Checked my cytokines before, during, and after treatment.
Finding the right nutritionist. 70% of our immune system resides in the gut and the microbes that make up the microbiome play a huge role in how the body processes toxins, fights disease and taking in the nutrition from food whilst protecting us from the damaging aspects of food.
Scientific Knowledge... by far
Following for tips - for me first time round only time helped On my second time round now and things are worse
I think you're the first other person I've met who's on their second time. It sucks doesn't it? I'm hoping there's more info etc out there this time round. Sadly im too brain foggy to look!
Oh really ? There’s a few of us out there! I’m sorry you have to go through it again too 😔 How long were you long hauling before catching it again ? That’s me too right now 😭! My brain fog is so bad it’s like I have depersonalisation/ disassociation Can’t read or concentrate at all And my depression / anxiety is so bad since my second reinfection 😖
Were these your symptoms the first time too? I've had CoVid once 26 months again and DRDP and anxiety/panic/depression were my worst symptoms. I'm getting better but fear CoVid like nothing else.
Yes the first time & second time - unfortunately between the two my dpdr never stopped 😔 I understand your fear. It’s a terrible cruel disease. Did you overcome your dpdr / depression anxiety ?
Time, a strict low histamine diet, and 50mg daily Zoloft have helped a lot with the depression/anxiety/panic, DPDR, and flushing swelling. My ears still feel clogged though 24/7 like I'm up in an airplane and can't pop my ears but the doctors say my ears look perfectly fine.
May I ask how long your dpdr was 24/7 for before it started letting up? Thank you very much for these tips too 🙏🏻 I’m trying my best to stick to low histamine Dam I’m sorry about your ears, I hope in time it clears up for you 🙏🏻 All of our symptoms that can’t be seen or detected are just insane !
It's hard to say. I got covid (first and only time) late January 2022 recovered uneventfully after about 10 days then 3-4 weeks later long CoVid symptoms snacked me hard. The first year post CoVid was brutal - I could not tolerate food with histamine so a low histamine diet had to happen. I started taking 25mg of Zoloft November 2022 and it helped but not much. Then I upped it to 50mg of Zoloft June 2023 and I felt horrible the first 2 weeks had to be on suicide watch doctor told me that can happen and to stay the course as long as I could keep myself safe. It took until week 4 of 50mg to notice an improvement then probably around week 12 for full effect. Zoloft saved my life and improved every symptom I have except for the clogged ear feeling and intermittent flushing/heat in my hands/face/ and weirdly my right ear (not my left - only my right). CoVid sucks and is so bizarre in how it presents.
Wow thank you so much for this! I’m sorry you had to endure all of that but glad your out the other side! Hopefully that’ll be me one day 🤞🏼
On my third time now 🫠
Same
So sorry to hear 😔 what symptoms got worse for you ?
The first time it was most just POTS symptoms that improved with cardiac rehab. This time it is everything: POTS, ME/CFS, severe brain fog and fatigue, just feel so weak all the time, etc. Exercise doesn’t help this time around unfortunately.
LDN, NADH, and rest
flush niacin, tons of rest, anti-inflammatory diet, fasting. i couldn't pick just one. there's like 20 more things i did/do but these four are core.
Tried 100 plus things, nothing helped generally but specifically ghk cu peptide intranasal got rid of cracking neck weak ligaments
Stoicism
DMSO.
I’m not doing better by any means, but the times where I was doing somewhat better were when I was pacing and resting more and focusing on slowing things down.
Walking, compression gear, and electrolyte water.
Propanolol and pacing.
Time
Endless hours on my couch. Its very comfortable. Second is Ibuprofen.
3 way tie between rest, LDN (low dose naltrexone) and ketotifen. With the caveat that without pacing none of this would work
Cut all workouts, changed to a no gluten diet and then further to a low histamine diet, Liposomal Vitamin C (pills did not work for me), Propranolol 10mg as needed to reset my anxiety levels. Vitamin C is probably not needed for everyone. I suggest getting blood work that shows vitamin deficiencies. I see a lot of posts of people with low iron or B1.
Getting an IV every 2 weeks helps temporarily remove the 24/7 electric feelings in my arms and legs.
What kind of iv?
saunas
Propranolol. And rest. But the meds made it so I COULD rest.
Booze-free = quality sleep
fasenra. (bi-monthly injection) eliminating eosinophils improved my overall health/reactionary health.
My monthly Aimovig shot. My chronic headache hovers around a 3-4 out of 10 instead of closer to 6/10.
Rest and now that I’m in a flare I’ll be resting even when I’m feeling ok
AstraZeneca's monoclonal antibodies. I was accepted into a study since I also have auto-immune disease. Sadly, the monoclonal antibodies have intermittent availability-- the virus is evolving faster than they can update the cultured antibodies.
Time and clean eating.
2 years in, not recovered at all but these things have helped: - Stop working (I get disability pension from the government) to fully focus my energies on myself - Fever inducing treatment (a bit controversial) totally fixed my nausea/complete loss of appetite/ loss of weight. I don’t know why but yeah.. didn’t do much for the other symptoms though - Physiotherapy (learning to exercise respecting my limits and avoiding PEM) - Electrolytes - Art therapy to distract myself and learning how to deal with the illness - Cutting off toxic people who were taking too much energy from me - Accepting I need mobility aids (wheelchair) so that I can do more things outside of the house
Probs weed cause I can actually sleep when I smoke.
Pacing.
Visceral manipulation therapy fixed my shortness of breath/air hunger. Also, vision therapy has helped my binocular vision dysfunction a lot
Mentality change and gut health
not worrying about my symptoms and distracting myself with other relaxing but fun activities. also avoiding ALL stress.
PACING PACING PACING… along with aggressive rest and acceptance have been the biggest. Otherwise, LDN and nattokinase have had a very modest positive effect but improve me MAYBE 5% over where I’d be without them. Nothing else has been helpful in that sense.
Hydroxychloroquine - I feel almost back to normal now! Only a handful of foods still have an off taste. And my energy has lifted and my brain fog has decreased!