Long COVID

[Rabdos]

Hello

I am having for the last week severe breathlessness, dizziness, tiredness but due to my oxygen not being below 93 all the time, it seems there is no support at all.

I never had a positive LFT but my GP suspects long COVID.

I am worried about:

• incorrect diagnosis (due to the negative tests)
• not getting relief which is really huge suffering
• not getting support to prevent further damage and speed up recovery

I wonder if there are specialists that can help both with the diagnosis and the treatment. The local hospital has a post-COVID clinic who my GP need to refer me to but I am under the impression the GP does not really bother or does not know or does not want to waste NHS money or something.

Is there any proper holistic service and how can I get referred there? I really do not understand this kind of behaviour of the GP, if someone suffers they do not do anything simply because they are not expected to die soon? Is the NHS such a mess that they limit spending and resources that aggressively? Thankfully I have a private insurance from my employer but NHS is supposed to be the first point of contact.

Thanks!

 

[Jaylee]

Hello

I am having for the last week severe breathlessness, dizziness, tiredness but due to my oxygen not being below 93 all the time, it seems there is no support at all.

I never had a positive LFT but my GP suspects long COVID.

I am worried about:

• incorrect diagnosis (due to the negative tests)
• not getting relief which is really huge suffering
• not getting support to prevent further damage and speed up recovery

I wonder if there are specialists that can help both with the diagnosis and the treatment. The local hospital has a post-COVID clinic who my GP need to refer me to but I am under the impression the GP does not really bother or does not know or does not want to waste NHS money or something.

Is there any proper holistic service and how can I get referred there? I really do not understand this kind of behaviour of the GP, if someone suffers they do not do anything simply because they are not expected to die soon? Is the NHS such a mess that they limit spending and resources that aggressively? Thankfully I have a private insurance from my employer but NHS is supposed to be the first point of contact.

Thanks!

Hi Rabdos,

Sorry to hear you are going through the mill at the moment.

How are you testing your oxygen levels?

 

[Riva_Roxaban]

How are you testing your oxygen levels?

He / she would have to be using a oximeter the same as I do to get his SPo2 readings like mine below.

 

[Jaylee]

He / she would have to be using a oximeter the same as I do to get his SPo2 readings like mine below.

Hi,

I would hope so.. As opposed to something like a feature on a phone?

 

[Riva_Roxaban]

Hi,

I would hope so.. As opposed to something like a feature on a phone?

Or one of those "smart" watch thingies.

 

[Rabdos]

Yes, I was using a finger oximeter, a supposedly good one from Braun but I recently got a wrist smartwatch as it measures SpO2 continuously (I think it also does VO2max).

I wore it today and so far it gives a range of 91-100%.

There is someone on Youtube who does kind of 'scientific' reviews of health smartwatches comparing them with a more proper medical devices and his test for this watch were good.

 

[Goonergal]

Hello @Rabdos

I have Long Covid so thought I’d try answering your questions by sharing some of my experiences.

I wonder if there are specialists that can help both with the diagnosis and the treatment.

Long Covid diagnosis is one of elimination i.e. ruling out any other easily identifiable cause for the symptoms being shown. It sounds as though your GP hasn’t even begun the process. The obvious starting point would be a basic full blood panel as well as checking out your lungs. What are your heart rate and blood pressure doing? I’d also ask for those to be checked at the same time.

I was fortunate that my GP ordered a raft of tests, including various x-rays and scans. At least part of the reason was because she found some abnormalities on my torso and wanted to rule out cancer, but she also checked lungs and so on. I’ve never had so much blood taken! I really would push for tests so you can be properly diagnosed.

The local hospital has a post-COVID clinic who my GP need to refer me to

If it’s anything like the Long Covid clinic I was referred to, they won’t accept a referral without you having undergone a huge array of tests first to rule out any other cause for your symptoms. My initial referral was rejected despite the number of tests I’d already had and my GP was asked to do yet more before they would see me.

Once you are referred the quality of the clinics is dubious. They’re also hamstrung by the current NHS/NICE guidelines which means that the latest developments in treatment/diagnosis are not being utilised by the NHS. Many, myself included, are following/have followed protocols available online and self-medicating. To be clear, I’m not advocating that, just explaining what I’ve learnt.

Ironically a number of doctors are prescribing very differently in their private practices.

As you have private insurance it might be worth you looking into seeing a doctor specialising in Long Covid privately. I have had one appointment at a private Long Covid clinic, which was well worth the money. However that clinic does not accept insurance, all patients are self-funding.

Is there any proper holistic service and how can I get referred there?

The short answer is no!

 

[Riva_Roxaban]

I’ve never had so much blood taken! I really would push for tests so you can be properly diagnosed.

The main one I did not like was the blood gas analysis, they has trouble finding the artery in my wrists. They did get a sample though..

 

[Rabdos]

Thanks!

Sharing some experience if anyone finds it helpful:
1) The GP used a ppt another GP uploaded to refer me to the COVID clinic. The test said to take an oximeter value after some light movements which is definitely not representative.
2) The post COVID clinic said you need to be 3+ months since start of symptoms to come here which is again frustrating.
3) The private chest physician I saw did not seem well informed on COVID, he just focused on my breathing when there are other things like memory loss, ageusia etc. He suspects post COVID asthma. But I am not sure everything fits with asthma such as hot flashes, extreme fatigue, poor sleep. The usual inhaler doesn't seem to do much.
4) The British Lung Foundation (now called Asthma+Lung) did a survey where post COVID patients say 'we are abandoned' which is exactly my feeling.
5) The private chest doctor will do some tests but no CT which is kind of disappointing. They also do some Xeon scanning but it's under research.

 

[Catsymoo]

Hello

I am having for the last week severe breathlessness, dizziness, tiredness but due to my oxygen not being below 93 all the time, it seems there is no support at all.

I never had a positive LFT but my GP suspects long COVID.

I am worried about:

• incorrect diagnosis (due to the negative tests)
• not getting relief which is really huge suffering
• not getting support to prevent further damage and speed up recovery

I wonder if there are specialists that can help both with the diagnosis and the treatment. The local hospital has a post-COVID clinic who my GP need to refer me to but I am under the impression the GP does not really bother or does not know or does not want to waste NHS money or something.

Is there any proper holistic service and how can I get referred there? I really do not understand this kind of behaviour of the GP, if someone suffers they do not do anything simply because they are not expected to die soon? Is the NHS such a mess that they limit spending and resources that aggressively? Thankfully I have a private insurance from my employer but NHS is supposed to be the first point of contact.

Thanks!

May I ask when did you have your initial covid infection?

I had covid in November 2021 and my body went downhill afterwards. I had the worst bout of gastritis for a few months, and then I had other symptoms and I'm still not well enough to work and don't feel like the person I was.

These were my symptoms:

Tiredness
Breathlessness on exertion
Hair thinning and falling out
Constant skin breakouts on the face (and I've always had perfect skin!)
Poor diabetes control
Lightheadedness
Gastritis
Headaches
Extreme sensitivity to light
Brain fog
Feeling out of it like I'm not really here


Then due to lack of activity my muscles gave up in my neck and shoulders and I'm now having physiotherapy. I was never diagnosed with long covid but my GP said it's a "factor" in why I'm so ill and cannot work because I cannot sit at a computer.

I would say just be persistent and put your foot down. I even changed GPs because I got dismissed and even blamed my migraines and nerve pain on being "obese". I'm less than 13 stone and I barely look a size 12-14!

Make sure to get a blood test as you might have some deficiency going on. My vitamin D was low and apparently that can make you feel pretty bad!

 

[Rabdos]

Ah sorry to hear that, I totally get you.

I never had a COVID antigen test positive. When had symptoms, I used to do PCR when they were free, lately I did LFT but none was ever positive.

An anti-n antibody LFT was positive a month ago which probably means an infection 1-3 months ago (i.e. 2-4 months ago from now).

I have most of what you list apart from the hair/skin and gastritis (I have several gastrointestinal symptoms though).

It is like sucking the life out of me, several times on a day, I just feel I cannot function any more and I go to bed.
It is a real disability as it does not allow me to do any physical or mental activity for most of the day, I have to skip even so basic tasks like getting up to answer the door bell or personal care things.

• The GP does not seem to bother
• The post COVID clinic refuses to accept me
• The private pulmonologist thinks it's just asthma

I read that asthma can indeed make you feel tired, breathless etc but mine is not just some breathlessness or tiredness, it's so intense I cannot function for maybe 2 hours max without having to go to bed.

What would give huge hope is to know that at least at some point I will recover, even after months.
This is uncertainty is what makes me going. Otherwise, if this is going to last for years or forever, it's not gonna be viable.

 

[jjraak]

Horrible to hear that @Rabdos .

I can only hope You get better treatment soon, and by those more knowledgeable

Life long asthmatic here,.
And while it's obviously not the whole thing, perhaps treating each part, as it presents might help ?

Firstly preventer sprays need to be taken religiously
Everyday no matter how well you feel.

And if You search peak flow meter Amazon, £10.
It's a simple device to measure your breathe.
Give good base line so You can notice improvements & declines AND take appropriate actions..

I found homemade ginger tea helped relieve my symptoms noticeably

Some steam/Vicks also loosened the airways
And made breathing easier

And finally, though I'm guessing this is already on your list LCHF had the most dramatic effect on me

So much so, it's almost, but not quite that mine is gone.

At a less optimistic level, I wonder how long we have to wait before the treatment of those post covid becomes the scandal it's destined to be ?

Millions left to suffer alone, many dismissed by medical 'experts' .

Wishing you the best of care possible
And pray for a full recovery, for you and so many others

 

[jjraak]

Hello @Rabdos

I have Long Covid so thought I’d try answering your questions by sharing some of my experiences.



Long Covid diagnosis is one of elimination i.e. ruling out any other easily identifiable cause for the symptoms being shown. It sounds as though your GP hasn’t even begun the process. The obvious starting point would be a basic full blood panel as well as checking out your lungs. What are your heart rate and blood pressure doing? I’d also ask for those to be checked at the same time.

I was fortunate that my GP ordered a raft of tests, including various x-rays and scans. At least part of the reason was because she found some abnormalities on my torso and wanted to rule out cancer, but she also checked lungs and so on. I’ve never had so much blood taken! I really would push for tests so you can be properly diagnosed.

If it’s anything like the Long Covid clinic I was referred to, they won’t accept a referral without you having undergone a huge array of tests first to rule out any other cause for your symptoms. My initial referral was rejected despite the number of tests I’d already had and my GP was asked to do yet more before they would see me.

Once you are referred the quality of the clinics is dubious. They’re also hamstrung by the current NHS/NICE guidelines which means that the latest developments in treatment/diagnosis are not being utilised by the NHS. Many, myself included, are following/have followed protocols available online and self-medicating. To be clear, I’m not advocating that, just explaining what I’ve learnt.

Ironically a number of doctors are prescribing very differently in their private practices.

As you have private insurance it might be worth you looking into seeing a doctor specialising in Long Covid privately. I have had one appointment at a private Long Covid clinic, which was well worth the money. However that clinic does not accept insurance, all patients are self-funding.


The short answer is no!

Hi @Goonergal ..
While I don't really follow anyone, there are those whose posts I take more note of, yours being one of them

Always sensibly balanced .

So sorry to hear You had such an awful time of this

Was aware You had gotten long covid, but the worry of the rest of it, compounding what is already an awful position for you...dreadful stuff .
Hopefully no action needed regarding that side of things I pray.

Best wishes things progress quickly back to a more 'normal' level of health for you

I guess those long canal walks are much shortened of late, if not even curtailed entirely

Take care &
Best wishes.

 

[Goonergal]

Thank you @jjraak for your kind words.

Was aware You had gotten long covid, but the worry of the rest of it, compounding what is already an awful position for you...dreadful stuff .
Hopefully no action needed regarding that side of things I pray.

No action needed. To be honest I almost wanted them to find something small and treatable that would explain all the symptoms and that the treatment would remove, but pleased to be given the all clear.

I guess those long canal walks are much shortened of late, if not even curtailed entirely

Initially curtailed, then much shorter. Still much shorter but many, especially those with Long Covid would be happy to walk the distances I manage, which helps keep things in perspective.

Best wishes things progress quickly back to a more 'normal' level of health for you

Thanks! And you - I’ve seen mention of your accident and without knowing the details it sounds horrendous. Take care of yourself.

@Rabdos in the absence of any medical help, there are one or two Facebook groups which have helpful information on them - there are so many on there, but I’ve found positive and constructive advice and support on these:

Beat Long Covid with a SmartWatch https://www.facebook.com/groups/829213261296558/?ref=share
Long Covid NAD+ Theory https://www.facebook.com/groups/781803472440966/?ref=share
End Long Covid Fasting and Vitamin Protocol https://www.facebook.com/groups/fastingtoendlongcovid/?ref=share

As with anything there are no ‘one size fits all’ solutions and your own research is needed, but these three groups include many who are knowledgeable and are mostly constructive and working on recovery. There’s lots of negativity in other groups (understandably as people feel awful) but I don’t find that helpful, so focus on these.

Also a couple of people to follow on Twitter for good information @gezmedinger @j_b_kennedy - plenty of others but these are good starting points.

 

[jjraak]

No action needed. To be honest I almost wanted them to find something small and treatable that would explain all the symptoms and that the treatment would remove, but pleased to be given the all clear.

Yes, I can understand the thinking behind that

Very mixed emotions getting the all clear there, then


And thank you for kind wishes.
Yes, definitely not recommended.

Six months on still struggling to walk so quite understand how life changing & debilitating Long Covid can be.

I had noted emoji responses to posts that maybe weren't on your usual trail ...most kind.

Hope today is one of those 'good' day's people talk about, for you .