After taking a nutraceutical called Vedicinals for four months, the oxygen returning to my heart increased by a whopping 56.3%!
My specialist is now making this hard-to-get blood test available for long covid NHS patients and private patients for £48!
To recap for anyone who doesn’t know me — I’m a severe long covid sufferer since March 2020, with “widespread-never-before-seen-post-Covid-damage”— from my blood to my heart and lungs; on a severely declining slope until I started a nutraceutical called Vedicinals:
Here’s some of my long covid horror story:
And if you want to learn what a ‘long covid fiery storm in the chest’ feels like, you can read about it in this article, published in January 2021 (and yes, it’s even worse than it sounds):
Since catching covid in March 2020, I’ve been trapped inside my own body.
No, I didn’t have any pre-existing conditions (just low blood pressure that I managed) and no I haven’t taken the vaccine.
I’m a ‘flagship patient’ at The Royal Brompton Hospital, as one of 130+ severe post-covid recovery patients. With the heroic and experimental endeavours of Dr (and Professor) William Man, Dr Laura Price and Dr Alex Lyon, some of my severe damage and symptoms have healed, through successful trials of apixaban and colchicine.
I have come a long way, however I still have a long way yet to go.
Each day, I have a limited amount of breath, thus a very limited amount of walking and talking and I have to literally choose how to use that limited oxygen supply before the dreaded symptoms return.
The BBC headline wasn’t just a ‘click bait’ title — it’s my reality. And the baffling accumulation of evidence supports why I describe my symptoms the way that I do.
However, if I ‘surpass my oxygen supply’, I experience left armpit pain which develops into full blown heart pain (and heart attack-like symptoms), severe shortness of breath, zombie-like post-exertional malaise, an inability to ‘get enough air’ (resulting in gasping), a heavy, tight chest and finally turning very cold and shaking (all ranging from mild to severe, depending on my level of exertion), which can last for days, weeks or worst, months as a result.
Consequently, I’ve had to spend the past two years and eight months largely sedentary, in silence and ‘scheduling conversations’ and movement, to ensure my oxygen metre had the capacity to be used up or risk severe symptoms.
I’ve also been diagnosed with microscopic clots in my blood, confirmed via a UCL study by Professor Marie Scully and flying to Germany, to be diagnosed by Dr Beate Jaeger.
This new blood condition was discovered by Professor Resia Pretorius in South Africa.
Treatment for this new blood condition in the medical system is unknown. And infuriatingly, it’s discovery (along with a previous discovery about micro-clots in my lungs defying radiology) isn’t being communicated from the top down to doctors.
I’m just one of many severe patients, though I’m in a very fortunate position to have extensive testing for this all to be found.
Meanwhile, many doctors think it’s a made up conspiracy on social media. I mean, it sounds absurd when you say it out loud. Yet, this is happening in real time and long covid sufferers are at the forefront of it.
There was a time when every medical condition was a new discovery — let’s remember that.
With that in mind, please read on…
P.s — I’ve tried to break down the complexity of what this all means into layman’s terms to make sense for other sufferers.
It’s hard enough for scientists and medical professionals to get their head around this, let alone the overwhelming reality of trying to educate ourselves when we’re experiencing the living nightmare of this illness (whilst simultaneously trying to be believed) amidst the array of ‘normal test results’.
Okay, so the epic news…
More ground breaking evidence has been found in me (again).
A high level timeline of the transformation…
In January, I kept repeating that “I feel like I’m dying” (even more than before) and “the oxygen was draining out of me (even more than before)”.
On the 14th January, a venous oxygen saturation blood test (blood returning to my heart), seen below as ‘sO2’ was 23% — the same as a critically ill ICU patient.
This day wasn’t even ‘a bad day’ for me so can you imagine the result when it was?
My previous respiratory physiotherapist informed me that when she worked in intensive care, she saw patients with results in their thirties being put on ventilators.
Mine was 23%. 23% PEOPLE!! As worrying as it was, I was relieved beyond belief that I finally had some evidence to support how severely ill I felt.
The result should be 65%+.
For more information about this test, read my previous blog below:
I FINALLY had evidence to support what I’d been breathlessly banging on about since March 2020 — feeling like I don’t ‘have enough oxygen in my body’, despite no drop via pulse oximeters.
The venous oxygen saturation result showed that I was in serious trouble — very little oxygen was returning to my heart.
Surely THIS result is why I experienced heart ache and heart attack like symptoms when I tried to walk down the end of my street!?
“We don’t know” is the answer I keep getting. I’ve had extensive cardiac testing and all “seems fine” but my BNP is still high, showing a strain on my heart. And of course exertion will increase that strain — I’m very literally trapped in my body.
I️n May, I came to Harefield hospital and had to be escorted in a wheelchair around the hospital or I’d experience despairing heart pain hours later.
At this point, succumbing to wheelchairs was my only way to get around, which I personally found highly distressing as it looked more and more like my future.
On the 9th June I started Vedicinals and it stopped my lung clots from returning — the first miraculous discovery from Vedicinals!!
I’ve been on the full dose and I haven’t stopped (there’s been no effect on my kidneys or liver — in fact, my liver inflammation from colchicine has now healed).
I’m still falling off my chair about this — gobsmackingly, Vedicinals resolved my resting tachycardia which was a symptom of the micro-clots found in my lungs! I know this through comprehensive symptom tracking, trialling apixaban and evidence from two VQ scan’s, which I’ll explain in my next blog. Of course, I feel very anxious about what will happen when I have to eventually taper off…
In August, I travelled to Lisbon and I was able to walk freely around the city, for HOURS plus talk for hours at a time, without ANY heart pain!!
Not that I understood it, but I will remember that feeling for the rest of my life.
In September, I ‘bent over too much’ whilst lightly painting and relapsed with heart pain for a week.
I was devastated. Though, the relapse would have been ten times worse had I risked this amount of exertion prior to taking Vedicinals.
On September 30th, I returned to Harefield hospital and I could *actually* walk around the hospital without symptoms and a wheelchair!
A stark comparison to May.
In October, I saw a noticeable slow and gradual decline — I was crushed.
That said, my baseline is significantly higher now and the mild decline doesn’t compare to how I was pre-vedicinals. It shows me that I need to try something else to keep building upon this new found baseline.
What’s interesting is the similar pattern seen from colchicine: a three month trajectory, followed by the same plateau and gradual decline.
WHOA! And the groundbreaking evidence?
My venous oxygen saturation was retested on September 30th and guess what it was…
…52.6% — the oxygen returning to my heart had increased by a whopping 56.3%!!!
I KNOW.
Again, it reflected my huge improvement from June to September.
I’ve gone from sofabound/housebound with severe limitations of talking and walking (otherwise I experience the long list of symptoms mentioned earlier in the blog )— to being able to walk very slowly around the shops and talking, both for hours at a time with minor symptoms.
This proves that Vedicinals has a physiological impact on severe long covid (well, mine anyhow).
Alongside this result, other improvements show:
- A pH level now in normal range.
- CO2 has lowered from 8.38 to 6.85, bringing it closer to normal range.
- FO2Hb has increased from 23% to 50.1%!
IMPORTANT — an SpO2 reading on a finger pulse oximeter has always been within normal range…
My result is always between the normal range of 96%-99% (interestingly 99% during exertion and symptoms), though this wasn’t checked during my covid infection in March 2020.
The hypothesis?
Multiple researchers from different parts of the world and institutions have shared the same hypothesis:
The anti-thrombotic (anti-clotting) properties in Vedicinals is lifting the confirmed microscopic clots which are circulating in my blood and trapping my oxygen.
The baffling part — even fifteen months of trialling apixaban (a blood thinner) didn’t improve my ability to walk or talk.
Why? It doesn’t break down fibrinaloid microclots.
Read this one pager, summarising everything (put together by Professor Douglas Kell who works alongside Professor Resia Pretorius). They, together with other researchers, go by #teamclots on Twitter, publicising their findings to help patients.
Thanks to their global collaborative efforts, they’re leading this new area of a medical discovery, subsequently inspiring other institutions to start researching microscopic clots.
And no, it wasn’t ‘placebo’ or down to ‘improving deconditioning’ *eyeroll*
In truth, I didn’t have high hopes for Vedicinals, considering my severity — I’m still stunned at the transformation.
If you mentally force yourself to ‘physically improve’ when physically you decline, it creates a perpetual mind-body tug of war, which ultimately hinders your ability to understand your body’s reactions — trust me, I’ve experienced it many times. A stoically unattached and prepared mindset, together with deciphering my body’s reactions via comprehensive symptom tracking is how I’m able to find clarity and patterns in the up and down results of trialling any such treatments.
(For those wondering — yes, I’m still working on launching My Symptom Tracker to help other sufferers but the truth is, this illness wore me to the bone. I continue to work on it in the small doses that my mental health can afford).
As for deconditioning — it’s a natural result of severe physical limitation; not a cause and anyone implying this, simply isn’t listening to what me or other severe long covid sufferers are saying.
The theory of ‘deconditioning’ can now be debunked from looking at the evidence — even when I was able to walk for hours, my sO2 still wasn’t within ‘normal range.’
‘Deconditioning’ is what medical professionals say when they don’t have an answer and it’s a highly dangerous rhetoric. You have to listen to patients when they’re telling you that we’re absolutely desperate to be able to do the things that we used to do as fit healthy people.
Unfortunately, myself and many sufferers aren’t as fortunate to be in the graded exercise therapy cohort like others are. I wish I was.
The sad/baffling/frustrating results…
- My gas transfer is still the same level as a moderate lung diseased patient. Oxygen is getting into my lungs just fine but not enough is transferring into my blood.
- My guess is hidden lung damage, which can only be detected by a scan at Oxford Uni (I hope we can find some answers through this in the future).
- And my INR blood test shows that I’m at risk of developing dangerous blood clots (albeit d-dimer always within normal range).
- My ‘free T4’ result was high which shows an abnormality with my thyroid — I’ve not experienced any abnormalities (ever) with my thyroid, until now…
Okay, so that’s the results! But how am I actually feeling now?
I have some freedom back in my body, to speak slowly for a few hours each day and walk short distances every few days without such severe breathlessness, gasping for air and my left armpit ache and heart pain returning.
I have a significantly better quality of life now and this improvement really didn’t look possible a few months ago.
I will explain more about the benefits in my next blog.
Nevertheless, the issues still remain— the longer I spend in silence and being sedentary, the more ‘oxygen reserve’ I have to spend on a conversation for a few hours or a slow thirty minutes around the shops.
I continue to ‘schedule’ both speaking and walking each day and week.
Every day there’s a tipping point and Vedicinals is keeping me on the stable side — similarly felt with colchicine too.
Please share this with other long haulers…
My phenomenal specialist Dr (and Professor) William Man (head of respiratory at The Royal Brompton and Harefield Hospitals) is now giving this hard to get venous oxygen saturation blood test to “appropriate long covid patients”.
I’m guessing ‘appropriate’ means those who report similar symptoms…
Dr Man’s been able to arrange it for private patients for £48, which is extraordinary in my opinion, considering this test is only available in ICU or on respiratory wards, hence why no patients (even private) can access it!
The test is available at Harefield hospital (a sister hospital to The Brompton).
He’s also offering it to other NHS long covid patients who are being treated at The Brompton.
I recently learnt that this test is also given in A&E, which is even more frustrating, considering none of us are getting it when we‘re inevitably forced to visit A&E due to severe symptoms, all the while knowing that we’ll be told the old chestnut “your results are normal, perhaps you’re suffering from anxiety”.
I wasn’t given this test in any of the three visits in A&E in two different hospitals, even when I was taken there by ambulance. And I wouldn’t have been given it, because my pulse oximeter was always normal…
Dr Man is single handedly changing the systemic route of investigations for his patients which requires a distinct level of professional curiosity, out-of-the-box thinking and trusting patients in a time when anecdotal stories is the clue to finding evidence. This is one of the reasons (in my experience) that he’s ahead of the curve in treating long covid patients.
To book in…
Contact Dr Man’s private PA, Anne Lewington (she’s kind, supportive and very efficient). The consultation is around £250 and then he’ll decide whether he can take you on as a post covid recovery patient and potentially give you this test.
There might be a small chance to be treated by him on the NHS too.
You can also ask your doctor to refer you to him — he’s the only respiratory specialist that I’ve heard of, providing extensive testing to severe patients as The Brompton have higher budgets for investigations compared to other hospitals.
I think what baffles me the most in all of this “medically unknown time of long covid” is the sheer disparity of knowledge between doctors. I’ve met many consultants throughout these 2.8 years and the answer is always the same when reading my medical letters — “we just haven’t been told this”.
So do you think that they’re going to be told about this venous oxygen saturation test as a means of finding more evidence? No.
Because what we’re looking at here is a new chapter of the medical textbook or well, a new textbook entirely called post-viral experimental medicine.
It’s all thanks to…
The incredible scientists and researchers aka #teamclots on Twitter, Kels Raihani (a fellow patient advocate) for telling me about it and Asad and Gez Medinger for creating a video about the venous oxygen saturation test.
Then, Dr Man for being so professionally curious and open minded to test it on me.
And of course, we wouldn’t have this comparative evidence without Joachim and Prakash who founded Vedicinals, whom have also given me a remarkable amount of support, contacts and guidance.
They put me in touch with Dr Abdul Mannan Baig (Covid-19 scientist) who is currently helping to improve my symptoms and tailor my treatments and Rachel Jessey (naturopath) who has helped me to collate more evidence and personalise my supplements.
I want to emphasise that Vedicinals has given me a substantially better quality of health, life and freedom in my body but like apixaban and colchicine, it is not a cure — more, a significantly improved foundation to build upon (well for me anyway):
It gave me some rather miraculous improvements and others have shared that it’s improved their symptoms and baselines too, however for others it hasn’t worked— it’s all a case of Russian roulette style experimentation.
The only way is to try it. That’s the case with all possible treatments for long covid.
Could it be a cure for those who have just ‘entered’ the long covid club? Maybe! Who knows?
In the meantime, we’re all learning through the lived experiences of sufferers.
I checked in with the team and the last day to order the discounted batch is tomorrow (15th November).
The Vedicinals team created a special price of $95 for three boxes (which is essentially free as I paid £98 initially just for the shipping).
After that, a new batch will be produced with new prices.
What’s next for me?
My next experiment is nattokinase (together with Vedicinals).
I’ll need to try and get some coagulation testing (I’ve been advised to get a partial prothrombin time INR test) to check that this thrombolytic and nutraceutical don’t have any adverse reactions when taken together.
That in itself is problematic, as coagulation testing isn’t given unless you’re on blood thinners / have a blood condition. I now have the latter but I’m trialling supplements outside of the medical system so where does that leave me? Where does that leave any of us?
I found this ‘advanced clotting’ testing panel via Medichecks, which could help others, if they’re not able to get the blood tests.
The fight for recovery continues.
I don’t know how long I’ll remain on full dose Vedicinals for but I’m very hesitant to come off it, as there’s a strong chance that my resting heart rate will increase — a symptom of the ‘return of the micro-clots.’
Or maybe it won’t?
Nonetheless, the continual self-experiments are emotionally and mentally turbulent to experience, creating further instability and that level of anxiety isn’t good for our bodies.
Yet, what choice do we have?
I don’t know if my baseline will continue to decline.
All I know right now, is that my health and life looks very different to what it was before I started Vedicinals and I’m going to keep building upon this new baseline, with the tremendous help of the Vedicinals team, Dr Abdul Mannan (scientist), Rachel Jessey (naturopath), my medical team at The Brompton (Dr Man, Dr Price and Dr Lyon) and Professor Douglas Kell.
There really is hope— especially for severe long covid patient’s from the first wave like me, when everyone seems to have washed their hands of us.
Even when you have a world leading medical team who don’t know how to treat you anymore.
Your symptoms can improve and you can feel better.
And I’m walking proof of it.
I hope this blog helps you.
My next blog post: the full report of my experience on Vedicinals.
