DS11 so exhausted can hardly get out of bed

[Pipeskeepleaking]

DS is a livewire: super fit, walks half an hour each way to school, regional level sport etc etc. Also ADHD: he doesn’t really sit still.

He’s had two ‘nothing’ viruses back to back - neither made him super ill - cold not flu type things. But he hasn’t recovered from the second. I mean REALLY hasn’t recovered. He’s completely exhausted. All day in bed today. No screens, only bits of reading (younger child books). Tears, lethargy. Still eating well.

i think I need to take him back to the GP, but what do I ask for? What might this be? I am frightened…

Does your son have fever?

What is the level of CRP (inflammation)

I assume they checked CRP a few times by now: did it increase?

Have they checked his heart?

• University College London hospital - 1 doctor- dr Terry Segal- did they contact her? https://www.uclh.nhs.uk/our-services/find-service/children-and-young-peoples-services/post-covid-service-children-and-young-people First symptom on the list of symptoms she deals with is fatigue. ''She is co-lead of the Pan London Post COVID service. She is particularly interested in working with young people with complex problems such as ME/CFS (Chronic Fatigue Syndrome), persistent physical symptoms''
• Dr Terry SegalTelephone:020 3447 5876
• Email:[email protected]t

If fever is also a symptom:
The link between long covid (with symptoms including fatigue and cytokine storm) https://www.frontiersin.org/articles/10.3389/fmed.2023.1011936/full#:~:text=A%20recent%20study%20shows%20an,of%20cytokines%20long%20after%20infection. ''Studies of Long COVID patients have shown persistent deregulation of a broad range of cytokines long after infection'' If there is inflammation: ''Several studies have shown that both mild and severe cases of COVID-19 can result in a hyper-inflammatory response characterized by elevated levels of numerous cytokines, including IL-6, IL-8 and TNF-α ''
''Cytokine release syndrome (CRS) happens when your immune system responds to infection or immunotherapy drugs more aggressively than it should. CRS symptoms include FEVER , nausea, FATIGUE and body aches.'' https://my.clevelandclinic.org/health/diseases/22700-cytokine-release-syndrome

• '' ex MRI' - does it mean excluding MRI? This is Sheffield uni : ''Hyperpolarised xenon MRI detected lung abnormalities in Long Covid patients with breathlessness which was not picked up by CT scans....The cutting-edge method of imaging was pioneered at the University of Sheffield. It takes just a few minutes and, as it does not require radiation exposure, can be repeated over time to see changes to the lungs'' Normal lung X rays will not detect covid damage

https://www.sheffield.ac.uk/news/lung-abnormalities-found-long-covid-patients-breathlessness

Have his platelets and white cell counts been checked? It's probably not but I did think, when I read your posts, of leukaemia.

Let me try and answer questions! Thank you so much all for help and ideas.

Blood sugar - they are doing something else on this (they said all was fine but they were going to do a test to look at longer term patterns.

He’s eating and drinking very well and always has.

Never had a fever.

dont know the name of exact tests but I will ask. Yes have said post viral and also said they thought of long Covid but have found zero evidence of Covid so far. Most recent test (not back) is to look for fragmentary viral DNA in blood.

white and red cells all fine. I will ask specifically about platelets.

ECG done, and lots of heart questions - he will be referred (non urgent) to cardiology just to check some things but they don’t think there’s anything concerning there.

I will ask about whether a virologist shd be consulted, and also about the long term fatigue clinic.

they said maybe a panel of lung function tests on Tuesday.

We have come home btw. So little happens at the weekend and adding hospital exhaustion to illness exhaustion felt unwise…

My husband had that at the same age. It took ages to diagnose because many doctors aren't aware or simply don't care. He had Myalgic Encephalomyelitis, ie ME/CFS. It took several big blood draws to get the diagnosis. He made a full recovery, but only after many years. He was totally bedbound thoughout secondary school years. Get your son's blood checked.

I’ll say it again, get him tested for LYME! It’s a simple test. Can live in the system for years. Symptoms are varied.

Might not be that, but get it ruled out. I’ve known many with it now over the years. It’s under diagnosed. Just encouraged a young family friend to test for it and was correct. She’d had it for more than four years!

Thank you for all the updates.I can't imagine how incredibly frustrating it all is.

So strange how he never had fever.
Did they ever say anything about inflammation markers?

Chronic fatigue (ME/CFS) is very similar to long covid. It's good they mentioned it, still there are no specific tests, it is a matter of ruling out other conditions but every test helps because different people can be affected by it/them in different ways.
The test for fragmentary viral DNA in the blood sounds like a step in the right direction . I wonder if this is what they mean: https://www.genomicseducation.hee.nhs.uk/blog/dna-clues-discovered-for-asymptomatic-and-long-covid-conditions/

The lung function tests also sound like a step in the right direction.

I came across viral RNA testing: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10159620/

Some more tests suggested by Imperial College London about ongoing inflammation, if they found any https://www.imperial.ac.uk/news/252415/long-covid-leaves-telltale-traces-blood/

I heard many times how important it is when you are in this situation to try and relax, despite the frustrations, to try not to fight them: be strong for your son and encourage him to try not to stress out, to take every step as slow and annoying as they are, but with calm & hope.. Good luck!

I am trying to get my head around the difference between viral DNA and viral RNA testing: I understand that viral RNA testing is needed when it comes to Sarscovd2 https://www.cdc.gov/coronavirus/2019-ncov/hcp/testing-overview.html and viral DNA tests when it comes to other viruses, like hepatitis.

I believe that for SarsCov2 a RNA viral test is needed and a viral DNA will not detect viruses like influenza or Sarscov2: https://www.crick.ac.uk/research/labs/david-lv-bauer/areas-of-interest/viral-rna-structure-function#:~:text=Unlike%20DNA%2C%20RNA%20can%20encode,to%20interact%20with%20host%20ribosomes.
'' Unlike DNA, RNA can encode information and function in its structure as well as its sequence.
This feature is exploited by all RNA viruses in one way or another. Coronaviruses, for example, use RNA structures to regulate their own genome replication, as well as to interact with host ribosomes. Influenza viruses use RNA structure to control splicing of viral genes and to drive reassortment of their eight genomic segments — the process that gives rise to new pandemic strains.''

I find it very strange how they decided to test for DNA(adenovirus) viruses but didn't say a word about RNA viruses (Sarscvod2) https://www.mybeckman.uk/support/faq/research/rna-and-dna-viruses-in-immunotherapy#:~:text=DNA%20viruses%20such%20as%20adenoviruses,RNA%20viruses%20are%20single%2Dstranded. knowing how much damage one specific RNA virus did without a break in the last 4 years to more than 69,000 children, while adenovirus isn't famous for this at all.

@ForRoseExpert you know, they may be doing it - I will ask when we go back. It’s hard to keep up w what they are planning when they are always in a rush. if you know the name of the test I should ask for, that would be amazing (is it just viral RNA?)

i did mention Lyme actually but it got lost in the midst of things: I will ask for that again.

@VolvoFan or others - is there a test for ME? I will certainly ask for that if so.

not sure what inflammatory markers they are looking for in the latest round of bloods but I will find out

@Pipeskeepleaking there is no test for ME, sadly. It's more of a test for a lack of something or things. It's a case of ruling things out bit by bit to isolate the issue. Hopefully it's not ME/CFS, because it absolutely is the pits. Whatever your son has, I'm hoping it's a very short-lived ailment.

Do you remember the long appointment with the midwife at the beginning of a pregnancy, when they tell you the long list of diseases they are going to test you for? They don't say DNA viruses: they tell you exactly what viruses they test for. So why isn't it the same now, why did they tell you viral DNA testing, instead of being clear about what viruses they are going to test for: hepatitis, adenovirus etc? I don't understand.

Oh my goodness I have recently had this and it was HORRENDOUS

I'm still not quite better now and it's been a month

There is no test for ME. You get a diagnosis of ME if you meet the criteria and they can't come up with any other diagnosis.

Just listening to this, where Dr Patterson clearly says how covid is a RNA virus and how they found out the tests to defirentiate between chronic fatigue, Lyme disease, long covid . It's a long film though and I might have to listen to it again or I might have to find another previous one where he explains the tests s Part of the medicine is to be informed: the fact that they are busy, it's their problem, not yours (NHS had 4 years spent denying the dangers to children instead of expanding children services, so it's not your problem). Whatever test they do, you should be informed as you would be about any other medical procedure, they would never skip the consent form blaming the workload.

The fact that 'they thought of long covid but found zero evidence of covid' is such a wrong and weird medical(?) judgment- to me it sounds like ideology- based on believes, not science and facts screaming the opposite, considering: 1. long covid can follow covid long after it's gone (sometimes there can be viral 'leftovers', but not always other times it can simply trigger reactions, reactivations etc 2. long covdi has 200 symptoms, some of the main ones being fatigue and breathlessness - to shut the door saying there are no signs of covid, sounds extraordinary after 4 years of science progressing.

How did they prove there are no signs of covid: doing the covid serology (blood tests, looking for covid antibodies). I am curious if they did this to justify what they said. Long covid can still happen after antibodies are gone.
'zero evidence of covid' means they did this test without telling you: when did they? Or the PCR test- which stopped years ago, so without it, how exactly do the know there is zero evidence of covid? Current covid infection has nothing to do with long covid- anyone know this for the last 4 years. By ruling out current covdi infection they can't rule out long covid, it doesn't work like this....It's the bare minimum of knowledge about covid they should have by now! More I think about it, more questions come to my mind. It makes no sense what they told you.

I just remembered: they also banned blood serology tests for covid more than 1 year ago (I read it on the gov website): so without any accurate diagnostic tools left how on earth can they tell you there is no evidence of covid? Did they swab his nose (this test is not always accurate)? And again to even think that this would rule out long covid is unprofessional and absurd

''Many of the symptoms of Long COVID overlap with those of other chronic conditions and autoimmune diseases, such as Lyme, ME-CFS and fibromyalgia.''
https://www.htworld.co.uk/news/diagnostics/first-long-covid-test-to-launch-in-uk-and-eu/ Apr 2024: ''The first test designed to help diagnose Long COVID is due to launch in the UK and EU''
I assume this is a private clinic: www.covidlonghaulers.com/uk/home Dr Bruce Patterson is the one in the previous youtube link talking about this test

He will explain it all here I think: drive.google.com/file/d/1KW5snevTGdybd5gUt3k6p2B0MOxLGYcl/view?pli=1

s min 37 he talks about treating children for a few weeks with cholesterol-lowering drug which is very good for blood vessel inflammation- atorvastatin. Especially where there are no neurological symptoms, children with long covdi symptoms recover in 4-6 weeks

Knowledge from real experts who don't try to gaslight: s