37 - Dr Asad Khan

Episode 37 of the Long Covid Podcast is a chat with Dr Asad Khan who has become well-known among the Long Covid communities. Asad caught Covid whilst working as a respiratory doctor on Covid wards, and has since developed Long Covid.

We chat through this experiences as well as what he has done in terms of treatments & managing symptoms. There is loads of really useful stuff in here - it was a pleasure chatting and I hope some of it is useful to you too.

Links:
Microbiome testing

Vagus nerve stimulation Placement and Settings 

Vagus nerve exercises (Sukie Baxter)

Unlocking the healing power of the vagus nerve

Fundraiser for Resia Pretorius clot detection method

Vedicinals

Gez 2 year video

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(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID Podcast. I'm delighted to be joined today by Dr. Asad Khan, who also has long COVID. So we are going to talk a bit about his experiences and what he's been exploring in order to get better. And I'm sure lots of other things, too. So welcome to the podcast.

Asad Khan  
Thank you very much for the invitation Jackie.

Jackie Baxter  
I'm delighted to have you here. So to start with, would you mind just introducing yourself a little and just saying what  it was you did before COVID, I guess,

Asad Khan  
Certainly. So I'm, by profession, a respiratory physician. I've been a consultant respiratorry physician since 2009. And I was working in Manchester at the time, when I became ill in November 2020. So I worked throughout the first and the first half of the second peak, very much on the frontline. I sub-specialized in sleep medicine, and long term ventilation, which is supporting people's breathing with machines, people who have conditions like motor neuron disease, etc. So that was my sort of niche. 

And I also had an interest in medical education. And I was also in charge of the pastoral care for the junior doctors within our department. So I had quite a remit and had a busy family life as well. And very active - traveling a lot. I have two primary school aged children and gym-goer, very sort of physically fit, as a lot of us were before we got this illness.

Jackie Baxter  
Wow. So you kind of lived through the first part of the pandemic before you caught COVID. Can you talk us through your illness a little bit?

Asad Khan  
I got this at work. Because of inadequate PPE. I was working on a respiratory COVID ward with a surgical mask and a plastic apron and gloves. And we were fed the narrative that this was spread by droplets and all we needed to do was wash our hands yet, colleagues all around me were falling sick. And it's staggering that that narrative exists. And there may have been a lack of PPE right at the beginning of the pandemic, but I think after that it's been a conscious political choice to maintain it. 

I had a full week on the COVID ward, I didn't go anywhere apart from work and home, and I would arrive home, strip, shower and go to bed and that was my life. And I had a mild acute illness, like a lot of us long haulers did. I did test positive on PCR. So I guess I was lucky in that respect, one could say, and then we all sort of toppled like dominoes. So after me my wife got it. And then my son, and then my daughter. 

And whereas I have connective tissue issues in retrospect, I am not neurodiverse but my son is, and I think he's also hypermobile. So that's another aspect that I think really should be the focus of some research because this is not the only example of this. There's lots of people who are reporting this link. 

I was in bed for a couple of weeks. I mean, in retrospect, a lot of us who weren't hospitalized probably should have been, I felt absolutely awful. But rode it through. And at the end of the month, I went back to work. It was very light desk work. And this was Christmas week and Christmas weekend. I think it was the 29th of December. That's when I started with my first long COVID symptoms. 

But I developed palpitations, that feeling like my body was on fire. I was going to the toilet to pass urine in every 10-15 minutes and it was burning. I was confused. I was in and out of drowsiness, and I developed a urticarial rash. I got hives all over my face and my neck and my scalp, but also I developed angioedema of the left eyelid and then the right eyelid. So getting swollen to the point where my eyes shut and I can't describe how intensely uncomfortable this was. Because it felt like you were basically on fire. And medication didn't really help this. 

And I remember being really confused at the time because I knew that there was such a thing as long COVID. But I guess I'd been so busy focusing on the acute care of the patients that I hadn't really explored in any detail. So in my search for answers, I chanced upon a Facebook group of doctors who either have long COVID who are interested in it. And I joined that and I said, this is what's happened to me. And I'm struggling to get any help. And straightaway within minutes, they said, Oh, it sounds like you have MCAS, and inappropriate sinus tachycardia. And you may have PoTS as well. 

So, I thought, right, okay, well, that's something. And I was with the help of my GP able to get some symptomatic medication. But then this was a theme where, I guess because of my medical knowledge, and because I had connections with other medics with Long COVID, I was able to identify what was going on, work out what treatment I needed, and then go to my doctor. And I think a lot of people have had that experience.

And my GP was brilliant, but I wasn't that lucky with some other specialists. Some of them were colleagues as well, you know, I was told that maybe I was over-perceiving my symptoms. The link between my urticaria and my COVID. And the fact that I noticed that, you know, I had all these other symptoms of food intolerances and urinary issues. And probably this hypermobility, when I suggested it, I was told that, you know, that was very unlikely. I mean, how likely are you to have four or five different conditions that are not linked? 

Jackie Baxter  
Well, exactly. 

Asad Khan  
And the lack of curiosity, was astonishing. So I soldiered on for six weeks, nearly suicidal because of the intensity of the burning and the itching, and then managed to get seen in the Urticaria Clinic and managed to get on to this monoclonal antibody called Omalizumab. And I wish I'd managed to get access to it sooner, because literally, within hours of getting the first injection, the rash melted away, as did the tachycardia at the time, and the urinary issues. So that was very interesting. 

I remained in this sort of semi stable, but unwell state, from the end of December through till the end of February. I was able to walk short distances outside the house, I was still able to drive. I was cognitively noticing that I was forgetting things. So I would have days where I would have no memory of the events that day. I remember one occasion, looking for my daughter in the house, thinking that I had picked her up from school when actually I hadn't. I remember mixing up my son's medication. So he has melatonin at night to help him sleep. He's got ADHD, and I almost gave it to him one morning, and then realized, actually, this is probably not a very good idea. I shouldn't be handling medication, because otherwise we'll have social services knocking on our doors. 

And then there was one particular amusing incident. Well, I guess in retrospect, it was amusing, that I went to the post office and I had two things to do. I had this letter to post and I had this Amazon parcel that I had to return at the counter. So I went to the counter, returned the Amazon parcel, came back out and started looking for this letter. And I was fumbling inside my pockets, looked inside the car, under the car. And there was a woman who had been observing this and she said, Are you  alright? And I said, Well, I just can't find this letter. She said Well you posted before you went into the post office. And I thought, oh, okay, well, I have zero memory. You know, sometimes you think you've done something we're not quite sure. But this was a case of there was just no recollection whatsoever. 

I remember trying to reverse park, and midway forgetting the maneuver, and then just getting stuck in this car park holding people up, who was getting quite agitated and screaming and that's when I decided, look, I can't drive anymore. So I was gearing myself up towards returning to work. And then in February, there was this push to get vaccinated because, obviously being a frontline worker. And I was in two minds about it, because I thought well, I'm ill still, and I'm not sure whether this is a good idea. 

Obviously, I'm pro vaccination. And, you know, as a responsible physician, I would advise vaccination, but one thing that we didn't do was vaccinate sick kids. You just wait till they get better. And I thought the same principles should apply. I didn't want to further trigger my immune system, but at the other end of the spectrum, I was concerned about reinfection. So, I went ahead and had the vaccine and literally within hours, I was bed bound with post exertional malaise and PoTS. 

Now, big disclaimer, if people start saying he's anti Vax, I think it's worth them remembering that I'm one of the people who actually went and got it. So that is nonsense. But, you know, some people have reactions. And I think this is something that we don't acknowledge or discuss enough. There's this sort of religiosity around vaccines that prevents any kind of rational discourse. And I think that fuels conspiracy theories. I think if we were honest about the fact that these things can happen, then that may go some way towards reducing vaccine hesitancy. 

So I was quite sick after that. And I think the combination of having had the virus and then this injury just led to me going downhill from there. And the PoTS was awful. I mean, at one point in August, I remember, all I needed to do was lift my head off the pillow. And I would instantly develop tachycardia, and I was vomiting. And I was laying in a darkened room, waiting for the end. And I'm not exaggerating here. 

Any sliver of light through the blinds, or rather, the rustling of the leaves outside or the presence of the kids in the room, even if they weren't doing anything was enough to trigger nausea and neuropathic pain in my hands and feet. And I guess now that we understand what PEM [post exertional malaise] is where we, you know, we understand some of the mechanisms. And it was the fact that I was so energy starved, that even that little stimulus was provoking this intense reaction.

Jackie Baxter  
Yeah, sounds like an awful experience. And sadly, I think a lot of people listening will be able to relate. Were you able to get any help at this point at all, from doctors or anything?

Asad Khan  
didn't get much help from the NHS - I was offered a referral to the long COVID service. But then it had become quite clear by that point that the service was not going to offer very much. I actually had been on the steering group for the service locally. And the agenda was very much talking therapies and rehabilitation. There wasn't really any willingness to do an initial biomedical assessment, looking for things like MCAS and PoTS and giving symptomatic treatment, because you know, these are things that are not hard to diagnose. And all you need to do is listen to the patient, and there are drugs available that you can treat people with and will make them feel better, it might not get rid the underlying cause. 

So I was banging away about this, but then got nowhere. So I left that steering group, because it was intensely frustrating. I found that, you know, people love hearing your sob story. But it's almost as if, when you go from doctor to patient, you lose all credibility. Suddenly, you are a patient - I was actually told us remember this, you are here as the patient. And I just went, what? I mean, A. that's very insulting to patients. And B, are you suggesting that overnight I've lost all of my medical knowledge and that I am no longer a reliable voice. And I think the message was very much that well you're biased, and your ideas about your illness will not be entertained. So that was tough. 

And, you know, there were hints from work about how, you know, in my absence, things were piling up and people having to cover etc. And that should never have happened. So anyway, I ended up seeing a lot of private specialists. And I guess, you know, disclaimer, I am fortunate enough that I can do this. A lot of people aren't. So I would find out who was good in a certain area, having made the diagnosis myself and then go to them. And that's how I managed to get access to some basic drugs like midodrine for my PoTS, and it shouldn't have taken that. 

And obviously, you know, like I said, my GP was brilliant, but I think their hands are quite tied because of formulary issues. So there's only certain drugs that they can prescribe. And that is a problem. But also, not so much in my own GPs case. But I think there's this fear of prescribing something that isn't in the guideline. 

And I take great exception to that, because at the end of the day, most of the prescriptions we make are not evidence based. They don't have a trial behind them, it's judgment. It's experience. It's a discussion between patient and doctor about what are the risks, what are the benefits, let's give it a go. 

So this sort of treatment paralysis, especially when you have an illness that has afflicted 100 million people over the world in a very short time span, just to say, we're going to wait two, three years for studies. And until then we can't do anything. It's just not good enough.

Jackie Baxter  
It's not really good enough is it?

Asad Khan  
no, no,

Jackie Baxter  
And this idea as well that, you know, patients aren't worthy of knowing things. I mean, like, Who could know better what's going on in your body than yourself? You know, that's intensely frustrating, isn't it?

Asad Khan  
It is. And I think there's, there's a number of reasons why this happens. We have become very compartmentalized as doctors. So, you know, there would be cases where I'd go to somebody, and they'd say, well your hearts Okay. Well, your lungs are okay. But nobody was really joining the dots, and going, well, a lot of systems can be affected here, what could be underlying this? That was quite clear that there was a distinct pathology, from which all of this stemmed. I could work that out. And you don't have to be medical to work this out. Because all of these things happening at once. 

And I think also, doctors feel threatened, when patients know more. And I don't think there was any need for that, because I would welcome it as a learning opportunity. Because at the end of the day, people are just picking up the pieces from the pandemic, doing their best, most of my colleagues and, you know, the clearing the backlog. So if a patient comes to them saying, I'm going to make your job easier here, this is what I think I have, this has worked for so and so, do you mind giving it a go? I think we should be really pleased about that. 

Jackie Baxter  
Yeah, exactly. Yeah, no. And I think, you know, as patients, you know, I've certainly found that I have probably a lot more time to be reading research papers and looking into stuff than my GP does, because they're working however many hours a day, and they're seeing all these patients. Whereas, you know, if I've spoken to this specialist, and they've suggested this thing that could help, if I was able to take that to my doctor, you would think that they would, you know, be pleased that I've done some of the work for them. I mean, I like you, I've had quite good experiences with my GPs, you know, they may not have been particularly helpful, but they've certainly been very supportive. But I know a lot of people haven't had that.

Asad Khan  
Yeah, absolutely. I mean, it's a constant battle, I think sometimes, of having to prove that you are sick. I'll give you one example, I went for a tilt table test. I mean, I knew I had PoTS, I think the whole world knows I've got PoTS, in fact, Gez calls me Captain PoTS, because my symptoms are so bad. And also I've done a number of active stand tests at home. And they've always been positive, I still fullfil the criteria, sort of, you know, 18 months in on medication, my heart rate goes up by 30 when I stand. 

So I went to this tilt table. And it was, these are awful things. I don't know why you bother doing them to be honest with you, because they make you feel sick. And I could only tolerate 10 out of 45 minutes of tilt. Now I went to a center that was supposedly, you know, very good at autonomic nervous system diseases. Naturally, within those 10 minutes, I didn't have a sustained rise in heart rate or drop in blood pressure. You know, it's just sods law that on the day that will happen. And I just got a letter back saying that there was no evidence of autonomic dysfunction. And despite the fact that the technician on the day was really concerned about how ill this test was making me and I crashed for a week afterwards. 

So had I not felt able to challenge that, then I will probably have accepted that and said, Well, you know, my ANS is fine, when clearly it wasn't. In fact, my ANS was so bad that I had nausea on lifting my head as I've explained, but also if I lay down because I had gastroparesis, again, self diagnosed, I would get nauseated. So it was a case of well, which nausea do I want, I want the one lying down, or do I want the one with, you know, sitting up. 

So I had this recliner chair. And basically my day was spent alternating between those two positions, 15 minutes lying down, 15 minutes sort of semi recumbent. And when I felt the nausea coming on, I would change position. And then I would try to squeeze in 5-10 minutes of breathwork meditation in between just to keep the vagal tone going. And I think that kind of pacing, because that's what it is, saw me through this. And it was exhausting in itself. But I think if I had allowed the symptoms to overwhelm me, I probably wouldn't have been here. 

I think the advocacy as well helps, working with Gez doing all those videos, speaking out on Twitter, which I you know, had been member for a while but hadn't been politically active. That gave me a sense of purpose, because obviously you know, you lose your identity. I wasn't doing my job. I had no role in the family, either as a husband or as a father. I wasn't able to serve any useful purpose. So this this I could do from my dead, and I'm glad I had that opportunity, that I was able to advocate for myself and, and for others. 

What are the other things I did find helpful. I talked about vagal maneuvers. And I think I've encouraged people to do this. So obviously, there's breathwork, there's mindfulness, but I think they act over time. Breathwork is very powerful. But mindfulness, even though I'd recommend everyone practice it, it's really hard at the beginning, because if you're getting distracted, so it's more of a case of building up the benefits over time. 

But in an emergency, what I found really helpful is the exercises from the book unlocking the power of vagus nerve - I think that unlocking the healing power of the vagus nerve. So if you go on to YouTube, there's various people that the one I follow is Sukie Baxter. And she demonstrates some of these vagus nerve exercises, and they're great when you're in that sort of sympathetic overdrive state, just to, you know, calm down that overactivity and bring the parasympathetic into play a bit more. 

The other thing that I have used a lot is the vagus nerve stimulating tens machine. So again, happy to share the links with you for the settings, etc. So I would do that sometimes constantly. I know a lot of people find it hard to tolerate, but I would make sure I did it at least three times a day, once in the morning, once before lunch and then once at night, for half an hour. And you know, that did help me avert some crashes and also come out of them sooner. 

And before anybody says that this is you know, this is all a bit cerebral and bordering on psychologising. I think it's not, because we know that there is sympathetic overactivity. It's not our fault that this happens. Stress can trigger sympathetic overactivity. It's well known it can. It can trigger autoimmunity, it can release cytokines, etc. And not everything that is going to help is a pill. Now, what you're doing is you're trying to modify your physiology, by different means. And I've certainly found this really helpful.

Jackie Baxter  
Yeah, definitely. And this idea as well, I mean you mentioned it, you know, when you're really really struggling, and when my partner will say to me, sometimes, oh, you're having a rough day, you should you remember, you should try your meditation, because that helps. And I'll sometimes say, I know that helps. But I actually I can't do that right now. Like I'm struggling in a way that actually I can't do it. And I'm sure other people have found, you know, when you're having your really bad moments that you know what you should do to help, but you just can't do it. So that sounds like those other things that you suggested would be quite useful for those moments when you just can't.

Asad Khan  
Yeah, I mean, you're so right, I've had a time during my, I think, I think in retrospect, was my second infection in December, where I just couldn't reach for the phone, I couldn't reach for the phone even to switch on a breath work. And I thought, I've actually done videos on breath work with Gez, and I can't do this. And this is how paralyzing symptoms can be. So I totally acknowledge that. 

So what you need then is something that is a bit more of a quick fix. And it may not work for everyone, every time. But I certainly have found it does help symptoms to do those Vagus Nerve Stimulation exercise, because you're not thinking and it's like a physical maneuver, and also the tens machine. So I'd definitely encourag people to do that. 

So that was me in September. And I wouldn't say I was on the verge of giving up. But things are pretty desperate. And that's when I got the call to go to Germany for Help Apheresis. And I had been on the waiting list for for some time. And I knew some people had been out there and had the treatment. In particular Gez and my friend Harry Leeming, who's another prominent long hauler, they were extremely helpful in helping me get there. 

And I remember nearly fainting in Doctor Jaeger's waiting room. Sitting down. Fainting sitting down is pretty spectacular. So she took me into one of the treatment rooms and I was due to have treatment the next day and she said, You know what, you're too sick. You need to get onto this now. So that she did and I felt a lot better immediately afterwards. I felt like I had cognitively improved and there was a clearing inside my chest and the chest pain had gone, this chest me that I've had for months that you know, I was trying to convince myself with musculoskeletal or possibly autonomic, which it may have been. It went. 

And that's when I realized I've been having angina all this time because of these micro thrombi. And now that there's been some clearing, the chest pain is gone. And we know now that there is this huge cardiovascular risk from even initial mild COVID, several months down the line, and there was a study in veterans demonstrating that. So I continued with the Apheresis, I continued to make incremental gains. I think had about seven or eight cycles. I was on anticoagulation with aspirin, Heparin. 

It was tough the treatment. In the middle of the therapy, I had a massive crash where I spent three or four days not sleeping and feeling nauseous. But I guess that was because a lot of the rubbish inside was being stirred up and removed. And in November, I switched to the triple therapy, which was aspirin, clopidogrel, and, in my case, Dabigatran, although there are other people who went on to Apixaban, and again, you know, don't self medicate. I had proven clots. And I was under the care of a experienced physician. 

That really was a game changer for me, to the point where in early December, I decided to have a break from Germany and I went to Cyprus, and I managed to stay in an apartment for two weeks on my own. I didn't do much. But I was able to look after myself. And I was able to go to supermarket and do a shop. Not a big one. And I thought, maybe now I just need to focus on resting and recovery. And I'm over the worse. So I was very hopeful then. 

But I went to the UK between Christmas and New Year to see my family and had what I thought at the time was a crash, but I think it probably was a reinfection. Because the symptoms were so awful, they were so disproportionate to any of the crashes I'd had before. Palpitations, nausea, vomiting, this complete inability to move, sweating and a low grade temperature. I was lateral flow and PCR negative. And I just couldn't come out of it. Despite all the maneuvers that I was trying, we had very limited benefit. 

And I rang up Dr Jaeger wasn't due back for a while. But then she said I think you need to come straightaway. And I arrived back in Germany on the fourth of January. And I had a number of cycles of help Apheresis and plasmapheresis. Plasmapheresis removes antibodies non selectively. She was working on the assumption that I might have these GPCR antibodies that attach to receptors, including the ACE two receptor, that might be triggering some of the autonomic symptoms. And I did benefit from that. But I haven't really got back to that December baseline. 

Jackie Baxter  
That's interesting. 

Asad Khan  
Yeah. And I had another infection in March, end of March. That again, lateral flow negative, PCR negative. But it was demonstrated by the finding of new clots on my blood film, where there had been practically none, a few weeks before. And there hadn't been a preceding stress or any anything that might suggest that this was a crash. And a few people around me, including my flatmate, had similar symptoms. So there was enough there to say this is another infection. 

And then, two weeks ago, I had what is probably my fourth infection, where I had to take a flight to see my birth family and my parents. I hadn't seen them for two years and it was eight hours. And obviously I had to lower the mask at the airport for ID check and I had to eat and drink on this eight hours flight. I came recumbent, lying down. Lucky that I was able to afford that. But yeah, I am just about emerging from that. Again, lateral flow negative, PCR negative. 

I'm hearing this a lot from people that are exhibiting these symptoms, which sound like infection, but then testing negative. And I thought I need to sort of somehow demonstrate this. Back in December, when I was well, my spike antibodies and my nucleocapsid antibodies were both undetectable or below the low limit of normal . The spike as you know, you can get those antibodies from either virus or vaccine and the nucleocapsid only from from the virus. 

And I just had them done last week. And the spike one was in the 1000s. So it was really high and the nucleocapsid was above the detectable limit. So I clearly had an infection, if not more than one, since December. So you know, when people say that the numbers are falling, and that Omicron is mild, it's all nonsense, because A. we're not testing. And there's probably lots of false negatives out there. 

And Omicron is not mild. I am not the only person who is struggling to get back to their previous baseline, after these infections. I've come across lots of people who have taken a step back and what it's doing inside to our brains, and to the rest of our organs. I guess, you know, we will find out the hard way, which is why it's really triggering when people say, you know, we need to get on with life. Because there's no living with COVID, there's only existing.

Jackie Baxter  
Yeah. And it really does highlight the unreliability of the tests as well. I mean, there's several occasions that you've just mentioned, where you have tested negative on a couple of different tests. But you know, that you've had it again, and again, and again. Do you think that you're - I mean you said, you've had it four times now, do you think you know, because you have long COVID, that you're more at risk at catching it? Or is it just just luck, or bad luck, I guess?

Asad Khan  
So. I mean, clearly, there would have been some air exchange with another individual. But I, to the best of my ability, did protect myself as much as I can, you can never protect yourself 100%. And you can't count for other people not taking precautions. But I wear an FFP2 outside or if I'm indoors, anywhere, apart from my own home, I still managed to get it. 

And as far as the propensity for catching it, I think there is  something there. Because I know a few other people who have had four or five infections in rapid succession. Some of it may be to do with the fact that with the Omicron variant, you don't really get protection against reinfection, because the thing mutates so much. 

But also, there has been a study which shows that even though you mount an antibody response, there are other aspects of the immune system that are affected by the virus. And it may be that once we have long COVID, or once we've had an infection, we become more susceptible to further infection. This is partly conjecture, but I think physiologically, knowing what we do, it does make sense.

Jackie Baxter  
And our immune systems have taken a bit of a hit, aren't they, you know, when some people seem to recover more easily than others. But I mean, certainly one of my huge fears is getting it again, you know, I basically refuse to go places because I'm so terrified of getting it again, because I don't know how I'd react to a second infection. And I know, I know, a lot of other people feel the same. But you know, we can't avoid everybody forever. And that's the problem, isn't it?

Asad Khan  
It is a problem. But I think also, you know, when people say you need to learn to live with the virus, I would like to live with the virus. But I would like to live with precautions. Living with the virus does not mean letting it rip. You know, there is no reason why we are not focusing more on air quality. Because we know that you can reduce the transmission between individuals in a confined space if you have HEPA filters in that room. We know that in a hospital setting, if you provide proper airborne PPE for any suspected or confirmed COVID, you will eliminate staff sickness due to COVID. I mean, they might get it from their homes, but you know, they won't give it to each other and they won't give it to patients. 

So there are things that can be done, and we can still live with the virus - it's just a different kind of living. And people see these things as restrictions. They're not restrictions, they're mitigations. And to say that what people don't like wearing masks, well, you know, I could argue I don't like washing my hands, or I don't like wearing a seatbelt. But the risks of not doing so are considerable. So we do it, we follow some sensible rules. And that is a bit but I can't accept - that we have this learned helplessness in the face of the virus. And this narrative has been really successful, that you can't do anything to stop this. Everybody's gonna get it and it's mild. So let it rip

Jackie Baxter  
Yeah, it doesn't matter. We'll just you know, it'll do what it will do. Yeah,

Asad Khan  
yeah. Yeah. And it's false. And, you know, there are people in my profession who are propagating this kind of discourse and that is, you know, I don't have the words for it, honestly. It's awful. It's very sad. We need to be more responsible. And this whole story about it being mild in children, and actively minimizing the harms to children, and the poor kids don't stand a chance to get long COVID, they can't advocate for themselves. They're not deemed reliable. They're not believed. 

And it was really interesting, you know, with the recent pediatric hepatitis cases, how quick people were to say that this was not COVID. I mean, it was the most obvious thing in the room, and how it got blamed on adenovirus. When adenovirus is everywhere, and everybody's got it. So you're gonna test positive for it. Finding it doesn't mean that that's a cause. 

So yeah, I'm getting a bit political here. But I think, you know, medicine and politics are very intertwined. And I think people need to realize that people in power don't necessarily have our best interests at heart. There is certainly a desire to preserve the status quo. And there's also this overwhelming need to be right. And not to have to say, you know, what, we got this wrong at the beginning. You know, we kept pushing for hand hygiene, when actually equally important, if not more, was air quality, and everyone precautions. But the institutional arrogance and medical orthodoxy means that they can't possibly admit that they got it wrong. 

I mean, I respect people who get things, right. And if they get things wrong, they hold up their hand and say, you know, what, scrap that, we need a different strategy. But no. And people will get harmed as a result of that. And it's no skin off their teeth.

Jackie Baxter  
it's frustrating, isn't it? You know, I mean, you know, we are human, we do make mistakes, everybody makes mistakes. I mean, some people make bigger mistakes, or more wide-reaching mistakes, if they happen to be in power. But I mean, I remember, I'm sure I've mentioned this before on the podcast, you know, when I went to my doctor, and they actually turned around to me and said, I don't know. And I remember thinking, Oh, my goodness, you actually admitted that, that's amazing, because that means that they're open to, you know, to research and to be looking into things. And, you know, just that admission, I just thought was amazing. 

You know, that's what we need more of, you know, we don't want arrogance of oh, well, you know, I don't know, so I'm going to pretend that you're making it up. You know, it's like, you know, if somebody like yourself, as a medical professional with all of this knowledge, and all of this research, and, you know, a vested interest in it, as well, you know, is being ignored, what hope do other people have?

Asad Khan  
We're talking about hope. Yes. I mean, if anybody has any illusion that there's gonna be some manna from heaven, that's going to drop anytime soon, in the form of, you know, a treatment, and that the people who are responsible for research and development will do the right kind of research anytime soon. Well, they've got another thing coming, that is not going to happen. They're pretending that it's not there. 

A lot of the studies that have come out, that have been funded are very poor quality, and focus a lot on discredited treatments, like counseling being suggested as a treatment or exercise even worse. And when they say that research takes time, and that you can't rush it, no that it's absolutely wrong. As David Putrino says, you can and we should, rush good research. It was done in acute COVID. We had the recovery trial set up and reporting within a few weeks. 

So we need the same kind of urgency for this illness, which is about to cripple the globe. And anybody who thinks otherwise is living in cloud cuckoo land. And in the meantime, what can we do? Obviously, advocate, lobby your MPs. And there are a number of us who are engaged in some research attempts. It's not for want of trying, but we're sick ourselves. And there's some great people out there, like I've mentioned David Putrino, but also Resia Pretorious and, Doug Kell and obviously some clinicians like Dr. beate Jaeger and we're connected to other researchers around the globe like Amy proal, like Anna Brooks in New Zealand. 

So the right people who want to do this for the right reasons that we're talking to each other. We just need somebody to help us with the funding, first of all. So, plug for my fundraiser for Resia's technique that she wants to develop for a scalable micro clot detection method. But also quick ethical approval for these studies. We can't wait, the normal kind of timespan does not apply. And in the meantime, I think we just have to make sure that we're doing everything we can to make ourselves better. 

The things I found useful - obviously I have gone on a lot about vagal health, but attention to the microbiome. I mean, that's huge. I had so many food allergies at the beginning, I couldn't tolerate most things. And it was only through paying real attention to my diet, where I basically eliminated anything processed and went on to a very low carbohydrate diet. And the time restricted eating allowed my parasympathetic nervous system to rest overnight, took decent probiotics, prebiotics on basis of microbiome analysis. 

It's not expensive, actually, there's a company called biome site that I used, and you just post the sample out to them. And I think it was something like 40-45 pounds, and then they give you an analysis, and they give you some basic sort of instructions as to how you can improve that. So doing that, for me, was enough to get rid of my food intolerances. Still, I can't tolerate gluten, which a lot of people with PoTS can't, and simple carbs I can't do, so any sort of sugar, or white rice or white flour. I just can't because it diverts too much blood to the stomach. And then you end up with this reflex tachycardia. So that dietary aspect is key. 

And otherwise, you know, if people have the resources, then they need to go and find the specialists that can help them. They're not many, but they are there. And I appreciate that this becomes a bit of a lottery, you know, who has got access, who has the resources. But whatever your reasons for that, do everything you can to get the help that you need, because you know what you need. Meanwhile, we will keep working behind the scenes. 

There are other things that are looking promising. So there is this nutraceutical that some people have tried called Vedicinals. So that seems to be quite potent. And there have been some good reports of people recovering from that. Again, you know, I have no ties to any of these. And I have no ties to Dr jaeger's clinic either. I was a normal paying patient there. There is BC007, which obviously can't come soon enough, which may be a very good option for those with these particular GPCR antibodies, this immunoabsorption, which removes these antibodies. It's not, I don't know if it's available in the UK, it's certainly available in Germany. So that is an option. They're all obviously very expensive options. 

And antivirals, I think that's something that needs to be studied properly. I had Paxlovid for my third infection, I had about two weeks of it. I didn't have a good response. But I know that others have felt differently. So yeah, there is no magic bullet. And a lot of people have been very keen to hear from me about my experience with Apheresis and anticoagulation, because I think the last time people heard from me was December. 

So my answer is they definitely helped. And it may be that the benefits would have been more sustained had I not had the reinfections. I am now struggling to get back to my previous baseline, I am pretty much back, you know, confined to one room. But I am hopeful that there will be something that will improve things and I will, as always, share that with people as soon as I have anything more to report.

Jackie Baxter  
Yeah, that's amazing that you have found some things and they have helped, you know, that's awesome. And that's really encouraging. You know, some of them are maybe a bit more out of reach for a lot of people like, you know, traveling to Germany for the Apheresis is probably not something that your average person could do. But, you know, a lot of the other things you've mentioned, are a bit more accessible, you know, that is stuff that we can do day to day, you know, potentially, so that is really, really useful as well. 

I mean, I think you know, you've sort of touched on it, you know, the financial difficulties for so many people with long COVID. I mean, you know, we can't work, we run out of sick pay, we get dismissed from our jobs, the benefits are not fit for purpose, and the problem is only going to get worse and worse with time, isn't it? 

Asad Khan  
Absolutely. Absolutely. 

Jackie Baxter  
It's a problem that is only going to get worse.

Asad Khan  
Yeah, yeah, absolutely. And you know, the benefit system. I think it sets people up to fail. Because I have applied for PIP and I got declined. So now I have should go through the whole mandatory consideration and appeal process. But doing that when you're so starved of energy is so hard. 

And you know, I'm very aware of my privilege here. I know for a lot of people, you know, that money could be the difference between them being able to access a certain treatment or not. 

But talking about other treatments, there is no reason why a trial of anticoagulation in the UK shouldn't be happening right now. Because those drugs are already available. They just need to be repurposed. And I think the fact that that hasn't happened, is unforgivable. But we will do what we can to push that. But really, it's not our job. It shouldn't be falling to us.

Jackie Baxter  
No, like you say, it is, it's so frustrating, isn't it, because these things are happening, but they're happening in Germany, or they're happening, you know, in other places that a lot of people, for whatever reason, can't travel there. But if they were happening in the UK, they would be so much more accessible to people like you and me, or, you know, in other countries to other people, you know, wherever they are. 

I'm not a medical professional. So I probably have less of an understanding of the sort of how trials get set up, and all of the ethics and stuff around them. But you know, I look at this, and I think, well, this research exists in South Africa. So why do we have to replicate it in the UK when it already exists? Why can't we just take that research and be like, right, we'll set up a thing? It just seems very frustrating to me.

Asad Khan  
Yes, it's very frustrating. And I think, you know, there's a number of layers to this. The clots are there, in people with long COVID. At the time, when Resia demonstrated them, they were not present to the same extent in controls, I mean, you know, everybody would have a little bit of clotting, but nothing like what you would see with COVID and long COVID. And the clots don't degrade with the enzyme trips. And that's one of the key differences. Whereas other clots due to other illnesses such as diabetes would do. 

So that's all been published, it's all out there. Yet, it has to be replicated in the UK. Those pictures don't lie. And what then - the logical next step is, right, well, let's get on and treat this problem then, we've got the resources, we've got the infrastructure, let's do a quick treatment trial of drugs, knowing what the mechanism is, formation of these clots. And this should have happened already. This is a vascular illness. 

Going back to the basic science, this illness, obviously there's different aspects, there's the potential for viral resistance, there's vagus nerve involvement, there's autoimmunity potentially in some people. But the one consistent finding that you have in every patient where this has been looked for, is the finding of clots and hyper activated platelets. And that needs treating - people are not going to get better unless that is treated.

So I mean, in terms of other things, providing hope. I don't know if people have had a look at Gez's latest video, but certainly it does appear that for those who have improved at the two year mark, good old fashioned rest and pacing has played a part. So yes, I mean, there are some people, and I don't know what the mechanism is, it may be that, you know, resting, keeping that sympathetic overdrive and inflammation down, having a good diet, allows the body to heal, allows the body to break down clots potentially, and get rid of virus itself, potentially get rid of these antibodies that some of us may have. Equally, you know, you can do all of these things are not get better. And certainly that was the direction I was heading in. But yes, these things will not harm anyone. So  they remain very important.

Jackie Baxter  
Yes, exactly. Because, you know, there are people that have recovered, which is awesome. But you know, there are equally you know, thousands, millions that haven't. So yes, you're right, that there is definitely room for a little bit of hope. I think  there has to be, doesn't there.

Asad Khan  
Yes, yes, absolutely. There has to be, and everybody who is concerned about this is doing everything they can behind the scenes. I just want listeners to know that. And obviously with the constraints that we're facing, it's just taking longer than it should, which is out of our control. But we we know this and we feel this as much as you do because we have it as well. So everything that can be done is being done. But just not by the big names and the big funders. 

But I'm hoping that the next few months will bring a lot more papers that will inform treatment. And I think our sheer numbers, they're ignoring them for now. But there will be a time when they can't. It is no accident that there are so many workplaces that are missing employees. The penny has to drop at some point.

Jackie Baxter  
Yes, exactly. It is starting to get to the point where it can't be ignored anymore. And I think you and I would say that that point of, we can't ignore it anymore probably happened a year ago, but at least you know, it is now starting to get insane. And, you know, we were talking earlier about, you know, cases soaring, and, you know, the virus being let rip. And, you know, these numbers are gonna rise exponentially over the next six months, aren't they? I mean, they already are, I think, to an extent.

Asad Khan  
Yeah. And I forgot to mention, obviously, that, you know, I'm hoping that a lot of this research and experience is going to benefit people with other post exposure illnesses, such as MECFS, or long Lyme, and obviously other so called Invisible illnesses, like fibromyalgia, like vaccine injury, for example, like fluoroquinolone toxicity, connecctive tissue diseases, PoTS due to other reasons. 

I mean, I think what this has uncovered, for me is the very shameful history of neglect, and abuse that these communities have suffered. And it shouldn't have taken so many of us falling sick with Long COVID for that to be acknowledged. So maybe maybe that is a silver lining.

Jackie Baxter  
Yeah, yeah, absolutely. I mean, I have a few friends with ME. And I had no idea until this happened to me, what they would have been going through for however long, it's definitely opened my eyes. And like you say, I really hope that the exposure that long COVID is getting because of the sheer numbers, will help people who've been suffering for so long as well. And then I moan about two years, you know, some of these people have been ill for 30 years.

Asad Khan  
I cannot imagine being in bed for 30 years, not only being in bed, but not being able to move without making yourself crash. I have to remind myself every day that I can still get out of bed and get to the bathroom myself when needed. And for some people that isn't possible. So not to diminish anyone suffering, obviously. But, you know, I think we owe that community a huge debt.

Jackie Baxter  
Well, thank you so much for joining me today. It's been really, really interesting just hearing about everything that you have to talk about. So thank you. I really appreciate you giving up your time and energy. And yeah, thank you.

Asad Khan  
It's a pleasure and a privilege. Thankyou very much.

Transcribed by https://otter.ai