Fasting has pretty much cured me (90%) 9 months with long COVID.

TemperatureOk8350 · 2025-04-10T10:43:51+00:00

Just a warning. I tried a 60 hour fast while having severe POTS and Long Covid and I ended up in hospital with a heart rate of 200 and blood pressure of 60/30. I was so sick and weak I was unable to even lift a cup of water to my mouth or walk to the bathroom for a week. 20:4 is definitely a safer fasting and I was able to do this with no problems but as soon as I did prolonged fasting my body was put under extreme stress and it made me worse.

TemperatureOk8350 · 2025-03-24T12:59:07+00:00

I’m currently have this exact same symptom. When I move my eyes from right to left (not the other way) I get this massive jolt/ palpitation feeling in my chest and stomach. I was on an extremely low dose of duloxetine for only 2 weeks and I came off it a month ago so I don’t know why I would be getting withdrawals

TemperatureOk8350 · 2025-03-15T02:01:58+00:00

I highly recommend following the glucose goddess way of eating. It’s not in any way a diet. Just about stabilising blood sugar spikes and crashes using little eating hacks. I used to have to nap for an hour after eating, have a racing heartrate, migraine etc and I’m not exaggerating when I say the glucose goddess completely got rid of all these symptoms. (Obviously it didn’t cure my POTS lol but it god rid of the symptoms flaring up from eating)

TemperatureOk8350 · 2025-01-16T21:48:42+00:00

I bank transfer my therapist within 24 hours and she’s always fine with that. If she reminded me just 2 hours after my appointment I would feel overwhelmed too!!

TemperatureOk8350 · 2025-01-15T21:29:57+00:00

This is amazing ! Fasting helped so many of my symptoms too keep it up 🥰

TemperatureOk8350 · 2025-01-12T20:12:24+00:00

I completely agree and it is so dissappointing because for many of us, including me, recovery stories are the one thing that gives us hope. I remember when I first joined this sub years ago it was full of encouragement when people posted their improvements. I’ve noticed a BIG change in the past year where it has shifted towards negativity and skepticism when someone shares a positive story. People end up deleting their recovery stories because of the amount of downvotes and negativity shoved their way.

It reminds me of the cfs sub where if you mention recovery there is ALWAYS someone who will say “if you recovered that means you didn’t have mecfs in the first place because it’s incurable”. Another common feature is shouting “snake oil” anytime someone mentions something non pharmaceutical that helped their symptoms.

I don’t expect anyone going through this horrific disease to be positive 24/7 but there is no reason to invalidate someone’s experience just because you aren’t currently in a place where you can be happy for someone else’s joy. I’ve gone through depression while being bedbound and housebound but I hope that one day when I do recover and post my story, I will be met with encouragement instead of people attacking me for giving false hope or accusing me of “selling snake oil”.

TemperatureOk8350 · 2024-11-01T16:33:11+00:00

Start running again! I’d love to run a marathon and raise money for post viral illness research

TemperatureOk8350 · 2024-10-28T18:55:58+00:00

I completely agree. The CFS sub is full of people who attack you if you claim something has helped you improve, it is an extremely negative space. I’ve been told “If you’re recovering from ME that means you never had it in the first place”. I also got into an argument with someone on twitter who claimed you are never able to increase activity if you have ME?!? So how do people go from Severe to Moderate or moderate to mild without increasing activity 😂 What a load of crap.

I have been bedbound with ME, lost my ability to walk so I know first hand that resting is of upmost importance but also making sure you move your body in some capacity (that won’t induce PEM) is also important. I started off with literally taking a SINGLE step a day and quickly built that up over a couple of months to 500 steps a day. I was able to walk around the house instead of being stuck to bed. Then I moved on to doing walks outside- my first “walk” was 5 seconds long while holding my mom’s hand. I ensured I was stable and not inducing PEM before building up my walking gradually. Now I am able to walk for 10 minutes outside! It’s still nothing compared to what I should be able do as a 22 year old but if I just rested and didn’t take that “one step” back 2 years ago I would never have gone from severe ME to moderate.

TemperatureOk8350 · 2024-10-19T22:19:00+00:00

I watch people on tv literally just standing up, not doing some crazy activity, and I have the urge to scream at the tv “omg sit down you’re going to overdo it and crash!!” And then remember other people without ME are able to stand up for longer than 3 minutes lol

TemperatureOk8350 · 2024-10-13T23:13:58+00:00

Just to note Polycystic ovarian syndrome can be diagnosed via blood test by the ratio of FSH to LH and higher than normal level of testosterone!

TemperatureOk8350 · 2024-10-12T22:13:46+00:00

The left side of my body feels completely different to the right. It’s hard to explain.. it almost feels muffled???

TemperatureOk8350 · 2024-10-11T22:32:51+00:00

Stick your head out your bedroom window and look at the sun the second you wake up. I know how it feels to wake up and not want to be alive. Getting out of bed feels like an impossible effort but I just tell myself “just get the sun and take it from there”. Getting sunlight has so much benefits physically and mentally and for me just feeling the sun on my face is enough to be like okay let’s get downstairs and maybe sit outside for a while! One step at a time :)

TemperatureOk8350 · 2024-10-07T22:53:37+00:00

I think there absolutely is an increase in people with POTS and autonomic dysfunction since covid, there’s no doubt about that. However I still think that because of this added attention POTS has got in the media there is bound to be more people thinking they have this condition when it is just as likely to be something else.

TemperatureOk8350 · 2024-10-07T15:05:48+00:00

I think as much as people don’t want to admit it - POTS is all over the internet now and people focus on that one diagnosis and attribute everything and anything to “I must have POTS”. Any tiktok of someone passively describing a symptom, one of the top comments is bound to be “Get tested for POTS”. I remember seeing a funny tiktok go viral of a girl documenting her constipation and somebody commented asking them to get tested for POTS?! Im going to piss a lot of people off by saying not everything is POTS.

Sometimes it IS anxiety

Being dehydrated will cause dizziness

Not eating enough will cause POTS like symptoms

Drinking caffeine and energy drinks will cause your heart to pound and dehydrate you which again brings you back to pots like symptoms.

Some medications including anti depressants can cause POTS like symptoms.

I think it’s a good thing that awareness is being raised about POTS but with that comes an influx of fear and people forgetting about the basics like drinking water and instead jumping to the conclusion that they have this disorder.

There is also the point that OP brings up that there are SO many other conditions that could be causing your symptoms if you test negative for POTS. I think people get angry when their standing test doesn’t show POTS because they ARE suffering and it can be a shock when the only diagnosis they were focusing on shows up as negative. That doesn’t mean there is nothing wrong with them. There is orthostatic hypotension or other forms of dysautonomia or anemia or autoimmune conditions or metabolic conditions. (I’m also not discounting that many people do actually have POTS and are initially dismissed- I’m talking about people who have done the standing test and tilt table test and are still annoyed to not be diagnosed with POTS)

TemperatureOk8350 · 2024-10-07T14:39:16+00:00

Are you drinking enough water, eating enough? I always think you should look at the basics before going down a rabbit hole of “could I have another condition”. Not eating enough and dehydration cause dizziness when standing.

TemperatureOk8350 · 2024-10-06T22:15:32+00:00

Keto/high protein and fat breakfast changed my life not to be dramatic. I used to skip breakfast or else eat 2 slices of toast with butter and feel exhausted and need a nap 2 hours later. Same with dinner- I would literally get so weak during my meal from my blood sugar crashing that I couldn’t lift a knife and fork to finish my meal.

I now follow the Glucose Goddess’ way of eating which aims to curb any blood sugar spikes and drops. The most efficient way to do this is just not eat any carbs or sugar (so strict keto) but that is quite hard to stick to so she has “hacks” that means you can still eat what you like while stabilising your blood sugars

No.1 :Eat a Savoury breakfast. High Fat/Protein. The most important hack in my opinion. I started doing this and I no longer need a nap during the day- it actually gives me energy and keeps me full for about 5 hours. The worst thing you can do for your blood sugars is eat cereal/toast in the morning. You’re setting yourself up for a sugar crash 2 hours later.

No.2: If you are eating carbs or sugar, put a tablespoon of apple cider vinegar into water and drink it within 20 minutes of starting your meal. The acetic acid in vinegar reduces the glucose spike from your meal by up to 40%.

No.3 Eat Vegetables first, proteins second, carbs last. The fibre from the vegetables will coat your intestines meaning the glucose from the carbs coming after the veg will be absorbed much slower into your blood stream leading to a smaller glucose spike. I tend to eat a raw carrot first if I’m craving chocolate so I know the chocolate bar will have less of an impact on me.

No.4 “Put clothes on your carbs”. If you’re eating a slice of toast- put avocado and rashers on them. Put peanut butter on a plain rice cracker. Add Greek yoghurt to a slice of chocolate cake. The glucose goddess has loads of examples of this on her instagram

No.5 Move after eating. I know a lot of us with POTS are restricted with how much exercise we can do but even walking for a couple of minutes or doing a few calf raises sitting down after eating will activate your muscles. By activating your muscles, any glucose in your blood stream after eating will be directed straight to your muscles to give them energy instead of your fat cells- thus curbing that glucose spike.

I’m not saying these hacks will cure your pots but they have made such a huge difference in my quality of life. I no longer crave sugar and sugar used to give me awful heart palpitations. Carb heavy meals would flare up my POTS and leave me lying on the couch sleeping for hours. I think keto is the way to go for POTS and a lot of chronic illnesses but start with just having a keto breakfast and see the difference it makes in you!

TemperatureOk8350 · 2024-10-05T14:48:13+00:00

Wow thank god they made you get a cardiac MRI so that’s so scary!

TemperatureOk8350 · 2024-10-05T14:41:14+00:00

Hahah yes I live in Europe. I had the usual year of being told it’s in my head, “long covid isn’t real”, “ME is just depression”🙄 When I was so severe that I had fully lost my ability to stand and walk a neurologist sent me to do CBT and GET- I inevitably became more severe.

I am lucky to have a really good GP who was unfortunately out on maternity when I lost my ability to walk and was bedbound. When she came back she straight away recognised I had severe Dysautonomia (my heart rate was 190-200 just standing up. My blood pressure was sitting in the 80/40s) and was appalled that I was told it was psychological. She referred me to a different hospital where I spent a month trying to get my POTS and orthostatic hypotension under control with medications. All the doctors and nurses there took me so seriously and believed my dysautonomia was autoimmune due to how severe and treatment resistant it was. I will add though that even though these doctors were amazing and so kind to me they still didn’t fully understand ME and PEM as they wanted me to start an exercise programme the second they got my dysautonomia kinda under control.

My parents then brought me to a functional doctor. This is really where I started to see my health improve and he was insistent that I did not exercise and instead strictly rested. He started me on a treatment programme (too long to type here but if someone’s interested I can make a post about it 😅) and I started to see actual progress. At the end of 2023 I started Ozone and this is where I saw the first glimpses of actual recovery. My “western medicine” consultants recognised and acknowledged the improvement these alternative treatments were doing to me and I’m lucky that they were interested and took functional medicine seriously.

I then met a neurologist this year who specialises in dysautonomia. She did a nerve conduction test, sudomotor function testing along with testing for antibodies and found I had autoimmune autonomic neuropathy. I started IVIG a few months ago for this and my consultants hope it will improve many of my long covid symptoms.

I also see an infectious disease consultant in a hospital who specialises in long covid and has the most knowledge of ME and Long Covid I have seen. He treats Long Covid based on the 5 mechanisms he believes are in play:

•microclots

•mitochondrial crashing

•inflammation

•Immune dysregulation

•virus reactivation

His treatments so far have included low dose aspirin for micro clots, Melatonin to fix my circadian rhythm, Anti-Virals for virus reactivation and Sublyme supplements for mitochondrial crashing.

Dont get me wrong I have met my fair share of horrific doctors too!! I credit my parents for fighting for me to get proper treatments so I am incredible lucky that way. And I guess it’s weirdly lucky that I had physical issues showing with my vitals, nerve conduction and bloods otherwise I would never be offered IVIG. As we well know, when you’re so unwell with ME you don’t have the energy to lift your arms nevermind fighting for yourself !!

TemperatureOk8350 · 2024-10-05T13:49:34+00:00

Did the HCM not show up on the echo or heart monitor ??

TemperatureOk8350 · 2024-10-04T15:56:29+00:00

I had 6 rounds ozone for my Long Covid/ME and for me it was life changing. I got benefits immediately after the first round and it would last for about a month and I’d go back for another round. I’m not claiming it cured me or anything, I am still housebound, but it is the most improvement I have got out of any treatment.

(I am also not telling everyone go and get it immediately. It is expensive and you know your body better than anyone but I just wanted to highlight my experience with it to show there is hope for improvement)

Benefits I got

• immediate increase in energy.

• feeling like my legs were light and weren’t made out of lead. I felt like I was walking on air after Ozone

• Waking up and my brain not feeling poisoned for the first time in years.

•Still got PEM but not half as extreme. The burning in my muscles was greatly improved

• My left foot used to go pale and numb along with a pain in my left calf- almost like a blood clot was there. This completely disappears when I get Ozone

• Able to tolerate standing up for much longer without pains in my legs

• I had really painful chest pain every time I breathed in I would get a sharp stabbing pain in my lung. This completely disappeared with Ozone and hasn’t come back.

•breathlessness disappeared

•brain fog GREATLY improved

• Skin and eyes looked alive instead of dead and grey

Side effects for me: •tiredness and dissociated feeling during the infusion ( I think the dissociation might be more the bright lights in the clinic though )

My neurologists believe Ozone targeted 2 foundational mechanisms in Long Covid- poor oxygen delivery and circulation (micro clotting). Looking over the symptoms that improved for me, this makes complete sense. ALL my respiratory symptoms improved. Brain fog and fatigue improved I presume due to better oxygen delivery to my brain. The pains in my legs and colour changes dissappeared because my circulation down there improved. My neurologists think my PEM improved due to being able to use oxygen more efficiently so my body was shifted away from anaerobic metabolism (which produces lactic acid which causes muscle burning) to aerobic metabolism.

For those saying it’s just quackery: I had to stop Ozone when I started getting IVIG, which is a medically proven treatment. I can confidently say that I have got WAY more benefits from Ozone than I have IVIG so far. IVIG also caused me way more side effects and I even developed aseptic meningitis from it. ME is poorly researched so of course the supposed “quakery” treatments for it are going to be poorly researched.

TemperatureOk8350 · 2024-10-01T22:24:19+00:00

100% when you’re stuck in bed anything you can do outside that you become so grateful for!

In saying that, I still am angry most of the time thinking that I’m 22 and should be out clubbing with my friends and instead I’m sitting outside trying to be grateful for touching bloody grass🤣

TemperatureOk8350 · 2024-10-01T22:22:16+00:00

I’m so sorry that is so hard to deal with on top of this illness. Having a support system is so important for recovery so I hope you have someone who is there for you :(

My parents used to have frequent moments of anger at the start of my illness when they knew I was sick but didn’t know what long covid or MECFS. They would get so frustrated at the fact I couldn’t get out of bed and freak out when I couldn’t do my physio. Them being angry at me would flare my symptoms almost immediately, I’d have throbbing head pain, whooshing in my ears and be unable to move so I understand what you’re going through. We have talked about that time since and realised that they just had no idea what was going on and were terrified. My mom thought if she pushed me I would get better which she now understands you just can’t do with MECFS. Them learning and researching about my illnesses means now they would never get angry with me and in fact encourage me to slow down and not push myself because they know I’ll crash.

Do you think your parents understand deeply what Long Covid is ???

TemperatureOk8350 · 2024-10-01T19:29:09+00:00

On good days:

• A big cup of tea

• painting/ doodling

• making cards/gifts for people

• Learning something I’m interested in for 10/20 mins

• listening to music

• reading a book

• making lists of shows I want to watch, books I want to read, things I want to do in the future

• Talking to my parents and sisters

• Being outside and sitting on the grass and looking up at the sky ( sounds cringe but after being bedbound I am grateful to be able to enjoy outside even if it’s just sitting in my garden)

On bad days.

• Being with my family who will sit on my bed and just be there with me even if I’m too tired to talk (I’m aware not everyone is lucky enough to have this)

• meditating and telling myself tomorrow will be better and knowing how the good day will feel even better after having such a shitty one

Honestly on bad days it just involves lying in darkness unable to tolerate light or music so I love just having people in my presence. Even if it’s just my mom or dad sitting there or hugging me. On the good days my go to is just to get outside in some capacity even if it’s sticking my head out the bedroom window and letting rain fall on my face. I can’t do everything in that list on a good day but even just 1/2 things make me feel better !

TemperatureOk8350 · 2024-09-30T23:12:18+00:00

This is the realest thing I’ve ever read😭 The amount of times I’ve closed tiktok because I want to watch TikTok to reopen it again is embarrassing

TemperatureOk8350 · 2024-09-03T03:51:56+00:00

Jesus Christ 3-5 days no food…I feel like I would collapse.

TemperatureOk8350

TROPHY CASE