Coronavirus, covid-19, covid-19 vaccine, & psychiatric drug tapering & withdrawal

[Onmyway]

3 hours ago, Colonial said:

Great posts, thank you Both! 😎

 

How are you recovering @Colonial? Are you having delayed reactions as well or things are getting that to pre-covid normal? 
Hope you are keeping well. 

 

[FarmGirlWorks]

14 hours ago, Onmyway said:

I am such a huge fan of Ed Yong, the author of this article. He's very thoughtful and thorough and wrote about this with compassion. I wish he'd write about ADs one day.

OMG: me too. I do not know his work but I thought this article was so well-done.

 

14 hours ago, Onmyway said:

"A" blood type is one of the most common from 30-45 depending on your ethnicity having type A. The correlation could be weak or with a small impact.

Did not know that... yeah, I am a sucker for a few days for new info about it. In the last few days I saw that Vitamin D may protect against Covid and decided to pick up some Crimini mushrooms at the grocery store (food source high in VitD). Guess I wasn't the only one who read that... there were like three crimini mushrooms left 😃 

 

15 hours ago, Onmyway said:

I found those fascinating too - esp the windows and waves pattern they experience. Is that a fundamental thing about our body that it heals in that pattern from grave injuries? Or is it that the virus and WD hit similar cascades - neuro-immune reactions? I'm just curious.

I am curious too. Reading a book called "Meditation as Medicine" by a doctor who also practices kundalini and he says that viruses hook to the same receptors as norepinephrine (a happy chemical) and that if the receptors have the norepinephrine already there then the virus has less real estate to hook up to a cell. Of course, it hooks up to respiratory cells and I have no idea if norepinephrine is found there. Idk. I think your thought that we heal from grave injuries in windows and waves is probably on target. Whatever the case, the similarities are fascinating.

 

Aside: a benefit to ADWD/PAWS is that I could spell norepinephrine without looking it up. Sign me up for the PAWS spelling bee.

Edited June 9, 2020 by FarmGirlWorks

[Onmyway]

On 6/10/2020 at 12:17 AM, FarmGirlWorks said:

OMG: me too. I do not know his work but I thought this article was so well-done.

 Check him out, he has been doing an amazing work on all the Covid stuff. I get all my info from him. 

 

On 6/10/2020 at 12:17 AM, FarmGirlWorks said:

 

Did not know that... yeah, I am a sucker for a few days for new info about it. In the last few days I saw that Vitamin D may protect against Covid and decided to pick up some Crimini mushrooms at the grocery store (food source high in VitD). Guess I wasn't the only one who read that... there were like three crimini mushrooms left 😃 

Yes, I had heard about vit D, they had discovered that those who had low leves had worse outcomes. There might be something there. But some much of this research is reversed quickly - things are a bit sloppy in the haste. vit D is helpful anyway so doesn't hurt to get more sun or as a supplement (though it can be activating in WD). 

 

On 6/10/2020 at 12:17 AM, FarmGirlWorks said:

I am curious too. Reading a book called "Meditation as Medicine" by a doctor who also practices kundalini and he says that viruses hook to the same receptors as norepinephrine (a happy chemical) and that if the receptors have the norepinephrine already there then the virus has less real estate to hook up to a cell. Of course, it hooks up to respiratory cells and I have no idea if norepinephrine is found there. Idk. I think your thought that we heal from grave injuries in windows and waves is probably on target. Whatever the case, the similarities are fascinating.

That thing about norepinephrine and viruses seems a bit bogus. Various viruses hook up to diff receptors  and I haven't heard much about this relationship but it doesn't necessarily mean it is not true. Just suspicious. But I am suspicious of most medical info these days so...

 

On 6/10/2020 at 12:17 AM, FarmGirlWorks said:

 

Aside: a benefit to ADWD/PAWS is that I could spell norepinephrine without looking it up. Sign me up for the PAWS spelling bee.

This made me chuckle alound! I will one day get the pronunciation of glutamatergic right. Hahahah. We should organize a WD pubquiz with different subcategories - I can think of the following categories off the top of my head - tapering/neuro-chemicals/weird symptoms/psychiatrist deception. I'll take strange symptoms for 300. What is 'being trrified by a red London bus?'

[FarmGirlWorks]

On 6/13/2020 at 7:17 PM, Onmyway said:

Quote

 

Aside: a benefit to ADWD/PAWS is that I could spell norepinephrine without looking it up. Sign me up for the PAWS spelling bee.

This made me chuckle alound! I will one day get the pronunciation of glutamatergic right. Hahahah. We should organize a WD pubquiz with different subcategories - I can think of the following categories off the top of my head - tapering/neuro-chemicals/weird symptoms/psychiatrist deception. I'll take strange symptoms for 300. What is 'being terrified by a red London bus?'

Well, that made me giggle. I mean, the second tier or story or whatever it is called, is a little alarming all the time. Weird symptoms for 400. What is 'becoming deeply paranoid about facial recognition and scrubbing your facebook account of all photos of your face leaving only the ones with big sunglasses and a Mexican wrestler mask'?

Edited June 16, 2020 by FarmGirlWorks

[Artistic1]

Love the idea of a pub quiz! Your examples made me laugh!

 

[Onmyway]

7 hours ago, FarmGirlWorks said:

Well, that made me giggle. I mean, the second tier or story or whatever it is called, is a little alarming all the time. Weird symptoms for 400. What is 'becoming deeply paranoid about facial recognition and scrubbing your facebook account of all photos of your face leaving only the ones with big sunglasses and a Mexican wrestler mask'?

OMG! This is brilliant! I so want to see the pic in a Mexican wrestler mask. FWIW, your fear of Facebook is probably not entirely unfounded.

 

I'll take rage attacks for 500. 

What is 'picking a public fight with your boss's boss over unfair practices and threatening to blow the whistle on something silly out of sheer neuro-anger at another colleague.' Granted guy is an arrogant incompetent blowhard. But still. Totally unnecessary. Today. Was shaking for the whole afternoon! 

 

In better news, we have a somewhat effective treatment for severe Covid!

 

6 hours ago, Artistic1 said:

Love the idea of a pub quiz! Your examples made me laugh!

 

Join in @Artistic1. We have to laugh at this ridiculousness sometimes. There was a  post in one of the forums describing an encounter with MH services where they had asked the person something about baking a cake when he was in a crisis. I had laughed so hard at it at the time. Couldn't find it now. Will link if I can find it again. 

[FarmGirlWorks]

@Onmyway: Right about FB: was talking with tech savvy folks and they told me that that privacy boat sailed long ago. That is, the corporations have my/our faces. Ugh. That is hilarious about the Rage Attack... had them too and it still makes me laugh at how off the hook they were.

 

But I'll take "Suicidal Ideation" for 100. What is 'getting coffee with another SA member and a guy comes over asking questions about dog poop bag prototypes. Which scent is best for the poop bags, lavender or vanilla? She politely asks him to leave and then turns to me and says, "we were too busy discussing suicide!"

 

Glad it made you laugh, @Artistic1. Not much is funny about WD.

 

 

Edited June 17, 2020 by FarmGirlWorks

[Onmyway]

On 6/17/2020 at 5:19 AM, FarmGirlWorks said:

But I'll take "Suicidal Ideation" for 100. What is 'getting coffee with another SA member and a guy comes over asking questions about dog poop bag prototypes. Which scent is best for the poop bags, lavender or vanilla? She politely asks him to leave and then turns to me and says, "we were too busy discussing suicide!

I think this should be in a comedy sketch! The absurdity of the dog bags and the "busy discussing suicide" is just priceless! 

 

It is so hard to explain the chemical assault to outsiders. I was almost giddy with joy the first time I had a desire to buy anything for myself - it was a red nailpolish - about 6 mos post 5 to 0 and reinstatement. Everything had been so yuck for all that time that the idea that people would buy clothes to enjoy had been otherworldly. The desire to buy nailpolish meant some clouds had parted, even if briefly. Never actually used it but I could imagine putting it on my nails. How strange this might seem to outsiders.

 

I'll take weird symptoms 300!

What is shaking like crazy/teeth chattering playing a board game after you have made a bet you'll win (no money involved) from the stress? Of a no-stakes board game with friendly people (nobody cares about winning). Went for hours before I could physically calm down. Mentally I was OK this time. 

[FarmGirlWorks]

6 hours ago, Onmyway said:

t is so hard to explain the chemical assault to outsiders. I was almost giddy with joy the first time I had a desire to buy anything for myself - it was a red nail polish - about 6 mos post 5 to 0 and reinstatement. Everything had been so yuck for all that time that the idea that people would buy clothes to enjoy had been otherworldly. The desire to buy nail polish meant some clouds had parted, even if briefly. Never actually used it but I could imagine putting it on my nails. How strange this might seem to outsiders.

LOVE THAT. Yes, when you want something for yourself it is such a paradigm shift, if even for a second. Hold onto that nail polish as a symbol of what you've achieved. Build an altar to it!

 

6 hours ago, Onmyway said:

I'll take weird symptoms 300!

What is shaking like crazy/teeth chattering playing a board game after you have made a bet you'll win (no money involved) from the stress? Of a no-stakes board game with friendly people (nobody cares about winning). Went for hours before I could physically calm down. Mentally I was OK this time. 

So funny: you know I never thought of it as a symptom per se but I went through a huge phase of "betting on stupid stuff" during the acute phase. Just anything really. Hell, I even bet my bio-father the first time I met him about something dumb for a penny (he won and took my penny which was so  informative about him). Never thought about it but the desire to bet tapered off last year. I want to think about it more now. Betcha I do it today 😃

Edited June 19, 2020 by FarmGirlWorks

[sunnysideup69]

Am slightly concerned about compulsory vaccination for Covid19, not that this has happened yet. Keeping an eye on it, however.

Speaking as someone who can't even really take a paracetamol any more without feeling odd, I wonder what the goodies inside a vaccine would do?

I guess there's no point in worrying about it yet. Seems a bit of a dilemma though.

Wondering what other people's thoughts are, on this.

In fact, being as WD can leave us so sensitive to any other chemicals we put into our bodies, I'm not even sure I'd get vaccinated if it were optional. 

Curious as to your thoughts.

 

[Colonial]

"Speaking as someone who can't even really take a paracetamol any more without feeling odd, I wonder what the goodies inside a vaccine would do?

Wondering what other people's thoughts are, on this."

 

I surmise those of us who have a documented history of reactions to anything in withdrawal would be exempted, for 2 reasons:

 

1. Anyone having a reaction to the vaccine for ANY reason is bad for business, and puts the vaccine in a bad light, even if it's not vaccine related, and

2. They don't want the truth about withdrawal getting out for any reason.

 

It's a "lose-lose" for them on either account.

[sunnysideup69]

3 minutes ago, Colonial said:

 

I surmise those of us who have a documented history of reactions to anything in withdrawal would be exempted, for 2 reasons:

 

1. Anyone having a reaction to the vaccine for ANY reason is bad for business, and puts the vaccine in a bad light, even if it's not vaccine related, and

2. They don't want the truth about withdrawal getting out for any reason.

 

It's a "lose-lose" for them on either account.

 

When you say 'documented history', do you mean officially documented with healthcare provider, or self documented. Just wondering what it would take to get out of anything compulsory...

[Colonial]

I'm thinking of the times you had to interact with you doctor and such.  Some of us have thousands of dollars in unnecessary testing and the like due to the brutal symptoms, MRI's, CAT scans, drugs having to be compounded and the like. The more of a written record you have the less likely they are to force you into doing something, since the outcome is not only monetarily risky but the publicity is bad, if they dope you up and you end up with amnesia having to be institutionalized for 6 weeks.

 

You seem to have enough of a documented drug history that you could do it.

It all depends on how much "we" make a nuisance of ourselves in reporting the issues to the doctors.

The more of a "problem child" you are the less they want to interact with you.

[rupa]

This statement is from a doctor from USA.

"""you donot need to fear about covid
you fear only if you donot get help early
if symptomatic then fear if steroids correct dose not started and given long enough to control inflammation"

This statement is from a doctor from USA.

For online covid treatment for Indians from the USA.

Azithromycin500 mg/ oral/once every 24 hours
1.Dexamethasone 6mg/oral/ once or twice daily
2. Eliquis 2.5 or 5 mg/ oral/twice daily
3. Albuterol inhaler 2 to 4 puffs/4 times daily
These are for patients with fever, cough and shortness of breath.
4. Doxycycline or Azithromycin can be added for secondary bacterial infection.
Doxycycline 100mg/oral/twice daily
Dexamehasone or Methylprednisolone can be used.
Methylprednisolone is better.""

https://www.medicalnewstoday.com/articles/323545#methylprednisolone-vs-prednisone

Any thoughts?

 

[ChessieCat]

With the increase of covid cases in Australia and Woolworths now asking shoppers to wear a mask in their stores, I decided that it would be a good idea to carry a mask with me in case I need to use one.

 

I've made a mask today and it has turned out very good.  The information and links have been added to Post #1 of this topic.

[direstraits]

wow you still have Woolworth's there...cool.🙂

[Frogie]

Our state mandated masks and people are screaming. I sewed some during the pandemic.

 

We had a Woolworth’s when I was a child. They are awesome!

[ShiningLight]

I'm also very concerned if the vaccine becomes mandated. I don't trust the covid vaccine if manufactured in the USA, especially.

 

Generally I'm not anti-vax. However, given the rush to market and the current situation, I don't feel safe. It may be mandated where I work. I'm very afraid of that. I don't mind getting the vaccine eventually, I just want it to be out awhile first. I mean, look at the gardasil fiasco.

 

My feelings and approach to self isolating during the pandemic has had an ebb and flow. I started early, in January I think. Then I got used to the pandemic for awhile and a little too comfortable. Now I (and my state) are back in lockdown. I am more conservative than what my state does. But when I get sick I get really sick, and I'm alone.

 

As unpleasant as staying home all the time can be after awhile, it is also very freeing to have to worry less! I'm still concerned about it if I go out to the store, but my exposures are so limited now. I'm working from home again and if I go to the store or get restaurant delivery service, those are really my only exposures. I do worry about the delivery sometimes though. 

 

One of the things that worries me is what will happen when my company decides that it will be safe to return to work. I like being in control of my own destiny, not subject to what somebody else thinks is an acceptable level of risk. I mean, I could quit at that time, but I don't want to do that during a pandemic/pandemic aftermath. I'm also not easily re-employable at my age.

[AlanC]

So it seems I may have had COVID-19.

 

My brother’s eldest daughter is a pharmacist at one of the UK’s largest hospitals. The hospital have been giving all their staff antibody tests; she had hers last week and it came back positive.

 

We’re pretty sure we know when it happened. Just before the UK went into lockdown (late March) her younger daughter had a bad cough / sore throat / mild temperature that progressed to swollen lymph nodes. As a result my niece was told by the hospital to self-isolate for two weeks; during that time she got it, as did her other daughter. None of them got particularly ill.

 

My brother and his wife usually take their two granddaughters to/from school and look after them until their mum finishes work. As a result they, and their other daughter, all got it: my brother had a slight sore throat, but his wife got it far more badly: it left her bed-bound for three days.

 

And I got it from my brother when he came to visit while his wife was ill. We had no idea what it was: at the time the UK government were saying the symptoms were a continuous cough / high fever / breathing difficulties. I coughed a fair amount for 3 days, had a temperature of about 99.5F and then got what felt like a mild asthma attack that went on for another 5 days and that wouldn’t respond to my reliever inhaler. If it hadn’t been for that last and the fact my niece has antibodies for COVID-19 I’d have dismissed the whole thing.

 

By mid April I’d recovered and was actually feeling better than I had in a long time but then, at the start of June, what felt like the worst wave ever started and has continued ever since. I’m tired all the time. I go out to do food shopping and it wipes me out for days. Even something as simple as changing the bedding leaves me tired - I have to stop for a rest half-way through.

 

I really don’t know what’s going on. Was the odd illness that went through my brother’s family COVID-19, or did my niece get the supposedly common symptomless version at some other time? Working at a hospital that deals with COVID-19 patients would certainly put her at risk. Is what’s happening to me now some sort of chronic fatigue triggered by the infection? If it is, why the odd delay before it started?

[ChessieCat]

@AlanC

 

In a nutshell, covid is a big unknown.  The medical community makes a statement about but then add/change what they say later on when they observe different things.  And of course it affects different people in different ways.

 

2 hours ago, AlanC said:

By mid April I’d recovered and was actually feeling better than I had in a long time but then, at the start of June

 

Q:  Did you have any additional stress happen at this time?  Make any changes to your drugs or miss a dose?  Did you start exercising or going out more often or staying up later and not getting as much sleep?  Drink alcohol?

 

Even if you didn't have covid and it was just a regular flu the best thing would be to not over do things at this time.  Try to get some gentle exercise even if it is just that you get up and go outside and then come back inside a few times a day, eat well, keep a regular sleep routine and just generally look after yourself.

[AlanC]

20 hours ago, ChessieCat said:

@AlanC

 

In a nutshell, covid is a big unknown.  The medical community makes a statement about but then add/change what they say later on when they observe different things.  And of course it affects different people in different ways.

 

Q:  Did you have any additional stress happen at this time?  Make any changes to your drugs or miss a dose?  Did you start exercising or going out more often or staying up later and not getting as much sleep?  Drink alcohol?

 

Thanks, Chessie.

 

Nothing changed. I keep a diary: there was no extra stress, no change in routine. I didn't even get stressed about the breathing difficulties because they were minor: I've had asthma for something like 42 years so I'm quite used to what it feels like. If it wasn't for the fact that it didn't respond to the asthma reliever I'd have forgotten the whole thing.

 

The fatigue is something completely new, though: it really does wipe me out in a way I haven't experienced before.

 

Part of me may be in denial: I really don't want to believe it could have been COVID-19 but the timing, the way it rapidly went through the whole of my brother's family and the fact my niece tested positive (it was the Roche test, so there's no doubt she has antibodies to it) make it seem probable. Ugh. It scares me.

[ChessieCat]

2 hours ago, AlanC said:

I've had asthma for something like 42 years

 

It could be that your existing asthma might mean that it will take you a bit longer to recover than somebody without a lung condition.  Especially since it is the lungs which are affected when people have covid.

 

2 hours ago, AlanC said:

Nothing changed. I keep a diary: there was no extra stress, no change in routine.

 

It might have been environmental.

[Onmyway]

Hi Alan, I think you should go to your GP and get yourself checked out telling him what you shared here. They should do a Covid Ab test and perhaps a chest x-Ray. It could be nothing, it could be WD or it could be that you have some residual lung issues. Some people apparently get lung issues for longer. 

 

CFS is a diagnosis of elimination so I wouldn't go there yet. Have you measured your O2 saturation level? As an asthmatic you might already have the pulse oximeter. 

 

I remember your GP like mine was a bit incompetent and nasty with WD so if might be better to go to AE with this and with Covid they might take you seriously. 

 

Hope it resolves soon! 

OMW

 

 

[ChessieCat]

Onmyaway - excellent suggestions

[AlanC]

On 8/8/2020 at 12:19 AM, ChessieCat said:

It might have been environmental.

 

 

My asthma is down to an allergy to peanuts / coconut / palm nut / soya fats or oils. If I can keep them out of my diet (quite difficult unless I cook everything myself: I've found soya things as simple as white bread!) then it stops completely. My first thought was that I'd slipped up and let something through because at the time I was having to make changes thanks to the panic buying at the start of the lockdown, but I never identified a possible cause.

 

On 8/8/2020 at 1:25 AM, Onmyway said:

Hi Alan, I think you should go to your GP and get yourself checked out telling him what you shared here. They should do a Covid Ab test and perhaps a chest x-Ray. It could be nothing, it could be WD or it could be that you have some residual lung issues. Some people apparently get lung issues for longer. 

 

CFS is a diagnosis of elimination so I wouldn't go there yet. Have you measured your O2 saturation level? As an asthmatic you might already have the pulse oximeter. 

 

I remember your GP like mine was a bit incompetent and nasty with WD so if might be better to go to AE with this and with Covid they might take you seriously. 

 

Hope it resolves soon! 

OMW

 

Hello Onmyway. Sorry I haven't posted for such a long time, and I really hope everything is going well for you.

 

I'm not quite sure what to do with this. You are absolutely right about my GP(s): I have, unfortunately, hit the point where I have no confidence in either of them and don't want to deal with any more of their arrogance and rudeness. I don't have an oximeter, but I do have a peak flow meter and, rather worryingly, that does show a significant decrease.

 

The best bet might be to talk to NHS 111 to see if they think I have any reason for concern.

 

Thanks to you and to Chessie for the advice.

 

Edit: My niece's "significant other" also works for the hospital. I just found out that he also got something around the same time she did, and has also had a positive result from the antibody test.

[bubbles]

4 hours ago, AlanC said:

I'm not quite sure what to do with this. You are absolutely right about my GP(s): I have, unfortunately, hit the point where I have no confidence in either of them and don't want to deal with any more of their arrogance and rudeness. I don't have an oximeter, but I do have a peak flow meter and, rather worryingly, that does show a significant decrease.

 

In the UK are you able to go to a different doctor or do  you have to stay at the same practice?

[ChessieCat]

At the end of June I had a tooth extracted at the hospital dental clinic.  I had my temperature taken, was asked some "covid" questions and had to alcohol rub my hands.

 

This week I returned due to a large bone fragment being exposed.  Additional to the above I was asked if I had been to any of the venues/areas listed on a sheet and given a mask to wear.  When I saw the dentist I was given a cup with some liquid in and told to rinse it around in my mouth for 30 seconds and then they would suction it out.  It had a chlorine type smell.  When I asked what it was for both the dentist and the assistant simultaneously said covid.

 

I am very surprised that they have only just started issuing the masks and doing the "covid rinse".

[FindRest]

4 hours ago, ChessieCat said:

When I saw the dentist I was given a cup with some liquid in and told to rinse it around in my mouth for 30 seconds and then they would suction it out.  It had a chlorine type smell.  When I asked what it was for both the dentist and the assistant simultaneously said covid.

 

I am very surprised that they have only just started issuing the masks and doing the "covid rinse".

I live in the central USA and have been having dental work done many times over the past several months (long story, same tooth). They’ve been doing the “Covid rinse” since we’ve opened up again back in May. Here, they use a product called Peroxyl, which is a hydrogen peroxide rinse. Until about a month ago, we had to check-in outside of the building where they’d check our temperatures and ask all of the Covid-related questions. Then, we were allowed to enter.

 

My friend is a dental hygienist. I got some advice that I thought was important: If possible, schedule your appointment to be the first one in the morning or the first one after lunch. These are the times there will likely be less aerosols floating around.

 

I just had what is hopefully my second-to-last appointment today for a crown. I feel lucky that I’ve had so many shots over the past months without incident, along with being in the office so often without being exposed. 

[ChessieCat]

Just found this mask which doesn't require a nose wire but has a fold over at the top.  And according to one of the commenters, no foggy glasses.

 

Update:  I've made one of these using 2 layers of cotton fabric and 2 layers of fusible interfacing and it fits well.  But after I made it I found an "improved version" of it which incorporates the elastic casing in the main pattern.

 

Separate elastic channels:  https://www.youtube.com/watch?v=DjluzpX99-4

 

Improved with elastic channels as part of main fabric:

 

 

 

Edited August 13, 2020 by ChessieCat

[composter]

Nice! Do you sew often? It’s been neat to see the resurgence in sewing and other “home arts” with the pandemic as these skills have become more crucial for things like making masks or feeding yourself. 

[Nonna]

Hydroxychloroquine and Zoloft

 

I have read the literature on line about possible interactions between these drugs. I’m curious to know if anyone has had experience taking them together. 

 

Edited August 20, 2020 by ChessieCat
added topic title

[ChessieCat]

These are the search results for hydroxychloroquine in this topic:

 

https://www.survivingantidepressants.org/search/?q=Hydroxychloroquine&quick=1&type=forums_topic&item=22542

 

And the search results for the Introductions forum:

 

https://www.survivingantidepressants.org/search/?q=Hydroxychloroquine&quick=1&type=forums_topic&nodes=3

 

Edited August 20, 2020 by ChessieCat

[ChessieCat]

46 minutes ago, Nonna said:

Hydroxychloroquine and Zoloft

 

I have read the literature on line about possible interactions between these drugs. I’m curious to know if anyone has had experience taking them together. 

 

 

Serious - Use Alternative

• hydroxychloroquine sulfate + sertraline

  hydroxychloroquine sulfate and sertraline both increase QTc interval. Avoid or Use Alternate Drug.

[ChessieCat]

It would be interesting to know what drugs were administered:

 

https://www.abc.net.au/news/health/2020-10-23/doctors-with-long-covid-warn-long-term-effects-can-be-serious/12785934

COVID-19 effects can be persistent and serious say doctors suffering 'long COVID'

ABC Health & Wellbeing

/

By Natasha Mitchell for Science Friction

Dr Nathalie MacDermott has been active in the fight against diseases like Ebola but since long COVID, she now has trouble walking.

Nathalie MacDermott is no stranger to deadly diseases.

She's worked on the front line of the Ebola epidemic in Liberia, Cholera in Haiti, and this year, treating children critically ill with COVID-19 in London.

But now she's fighting on a more personal front line.

Dr MacDermott is suffering serious, ongoing symptoms after contracting COVID-19 back in March.

When her feet went numb while driving, she knew something was seriously wrong.

Then came the searing pain in her back, radiating down her arms and legs, when she walked up stairs.

"I am no longer able to walk more than a few hundred metres. My legs just aren't strong enough."

"The further I try to go, the more that my feet start to kind of scuff and drag along the ground," the paediatric infectious diseases physician says.

Dr MacDermott had an MRI scan which appeared normal but is still undergoing tests. She and her doctors suspect coronavirus — or inflammatory processes triggered by the virus — have attacked her nerve cells and affected the function of her spinal cord.

Dr MacDermott is one of a growing number of previously healthy people who identify as having 'long COVID', a bewildering array of symptoms that continue months after the initial, acute signs of infection.

"The concept of long COVID has been dismissed ... even in the medical sphere," she says.

But now Dr MacDermott is part of a group of UK doctors affected by persistent symptoms of suspected or confirmed COVID-19, who are calling for more research, better monitoring, and medical support.

They've joined a growing chorus on social media and in online support groups campaigning for health authorities to #CountLongCovid, and to take the plight of self-described #LongHaulers seriously.

Dr Amy Small was a committed runner and a picture of good health before long COVID struck her.

"I have seen too many cases of people not being listened to, and their symptoms and concerns not being validated," Amy Small, a 39-year-old GP in Edinburgh who has been struggling with COVID-19 symptoms since April, says.

"I've seen heartbreaking stories of people losing their jobs."

One estimate suggests more than 10 to 20 per cent of people infected with coronavirus have ongoing symptoms in subsequent months — according to data collected by the COVID Symptom Study app in the UK.

"Anyone, it seems, can potentially get ongoing long COVID symptoms," Dr MacDermott says.

Overlap with chronic fatigue syndrome

Striking parallels are emerging with another disabling condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which has similar symptoms, and also receives a mixed response from the medical profession.

ME/CFS is a chronic and relapsing condition which can occur after a viral infection. The illness is characterised by extremely debilitating fatigue, "brain fog", muscle aches and pains, memory problems, headaches, and unrestful sleep.

There is some crossover too with another condition called fibromyalgia, in which people experience ongoing musculoskeletal pain all over their body.

As a patient himself now Dr Ian Frayling hopes to help research into long COVID.

Those suffering with long COVID also speak of crushing fatigue, brain fog, and muscle aches and pains.

"You struggle to even think about thinking about something," Ian Frayling, a genetic pathologist and medical practitioner in Wales who contracted COVID-19 in March, says.

"[It was] the worst five or six days of my life.

"There was this cough that was like no other."

Dr Frayling describes the months since as like living with a "cyclical chronic fatigue syndrome".

Some days he feels okay, but then he crashes. He struggles with language, breathlessness, disrupted sleep, tachycardia (excessive heartbeat), and a debilitating exhaustion.

"I could be desperately short of breath...just packing bags in the supermarket, for heaven's sake."

The symptoms can flip from hour to hour.

Long COVID research could help those with ME/CFS

Dr Small said many in the ME/CFS community are connecting with her on Twitter, hopeful that any research done on long COVID may also help them.

"They have been gaslighted by medics for a long time [and] told that their symptoms are psychological," she says.

"Chronic fatigue syndrome and all of the related syndromes that go alongside that population have been deeply let down by medicine.

"[But some with ME/CFS ask] 'why are you so special with your long COVID when we've had this for years and no one's believed us?'.

"I think we have so much to learn from each other, and a lot to gain from working together."

Difficult to diagnose

As with ME/CFS and fibromyalgia, long COVID is proving difficult to diagnose because of the confusing range of symptoms.

In April, Dr Small experienced the classic symptoms of COVID-19 — fever, extreme breathlessness and falling oxygen levels, a splitting headache, body aches, and then a persistent cough.

Her husband and 2 small children experienced COVID-19 symptoms too. But in the six months since, Dr Small is still experiencing recurrent fever, elevated temperatures, dizziness, and other perplexing symptoms.

When she tried to go back to work at her Edinburgh clinic in June, she got a shock.

"I was feeling a bit better physically ... [but] ... that afternoon I started to feel a fatigue that I've never experienced.

"Just doing a half day's work using my brain left me bed-bound for about 10 days."

 

"My speech was slurring. I couldn't find my words. I had a day when I couldn't speak."

"It is a really terrifying experience."

New symptoms continue to keep surprising Dr Small. In August, she suddenly lost her sense of smell.

"I don't understand how it's affecting our bodies."

Like others, Dr Small wonders whether her immune system has been triggered to respond as if she still has the active coronavirus.

"This is something that just needs so much more research and investment," she says.

Dr MacDermott agrees.

"The medical profession has an inclination, when it can't explain something, or when initial basic tests appear normal, [to] dismiss things as being anxiety related or psychosomatic."

Research needed to make sense of long COVID mystery

Long COVID doesn't appear to discriminate by age or health status — even those who experienced mild or asymptomatic COVID initially are reporting prolonged symptoms.

"We're now discovering that many ... actually have got evidence of underlying organ damage secondary to COVID that's only now being picked up," Dr MacDermott says.

"It simply wasn't possible to be seen in an outpatient department until fairly recently."

If people had mild symptoms of infection the message early in the pandemic was to isolate and recover at home.

"Those who weren't hospitalised with the illness were just sort of left to get to get on with it," Dr MacDermott says.

This has meant many have suffered in isolation. Others have banded together in their thousands online to drive a patient-led movement calling for their symptoms to be taken seriously by medicine.

There is now mounting interest in their plight.

For example, the UK's National Institute for Health Research is using patient testimonies to investigate long COVID. One suggestion is the condition could in fact be multiple syndromes, including post-intensive care syndrome and post-viral fatigue syndrome.

"Given the volume of people affected by long COVID in a short space of time, and the likely link to an infection with COVID at some stage, I hope that means it's much harder to dismiss this," Dr MacDermott says.

Dr Frayling is struggling to understand his symptoms, but he feels like he has got off relatively lightly compared to others he's heard about.

"Their breathing [is] affected in a much more serious manner. They have permanent changes to their lungs. Some people have permanent changes to the conduction pathways in their hearts," he says.

"There's all sorts of other things going on."

The respiratory system, heart and cardiovascular system, the brain and nervous system, the kidneys, and the gut all appear to be affected differently in different people.

"We need to realise it's a spectrum of disease, and it is also a multi-system disease," Dr MacDermott says.

Avoiding a second pandemic

There are other signs that people with long COVID are being listened to.

The National Health Service in England has set up a new Long COVID taskforce and announced that specialist clinics will be available to people with ongoing health problems from coronavirus, including those who weren't hospitalised or didn't receive a positive COVID test but who meet the clinical case definition for infection.

Dr Frayling is concerned about a second pandemic — of long COVID — one that is silent, disabling, and difficult to diagnose.

"In terms of the total health burden, that will way exceed whatever acute COVID did to us by the time a vaccine comes on."

Dr Small, active in the British Medical Association and the busy mother of two, is worried about whether she'll be able to continue working as a busy GP.

"I worry about the future. I worry about the impact on every aspect of my life," she says.

"It's absolutely heartbreaking to see a four-year-old look at his mum and think, 'oh, I must help Mommy'."

It's changed the way she sees her role as a doctor too.

"As a GP prior to all of this, I was pretty sceptical of things.

"I certainly had sympathy for conditions like fibromyalgia, but I didn't have the empathy that I have now. I didn't understand it. I really didn't get it.

"If I could go back and speak to myself as a GP prior to all of this, I would have been a much better doctor then, and I will hopefully be a much better doctor now."

[Shep]

15 hours ago, ChessieCat said:

Overlap with chronic fatigue syndrome

Striking parallels are emerging with another disabling condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which has similar symptoms, and also receives a mixed response from the medical profession.

 

I came across this paper recently:

 

NCBI - Psychopharmacology of COVID-19

 

In Table 1 under the "Solution" column, it states:

 

Quote

 

Monitor coagulation factors and platelet count; weigh risks and benefits for individual patient but consider avoiding SSRIs and SNRIs in patients with recent bleeding or high risk for bleeding (e.g., thrombocytopenia, concurrent anticoagulation therapy, history of hemorrhage); can instead use nonserotonin reuptake inhibitor antidepressant such as bupropion

 

Adjust lithium dose based on renal function; consider temporarily holding lithium until acute kidney injury resolves

 

Avoid or taper existing benzodiazepines in patients with delirium if possible

Weigh risks versus benefits in using benzodiazepines in patients with prominent respiratory symptoms; a low dose may be able to be used safely in nondelirious patients
Avoid midazolam and triazolam and consider using lorazepam, temazepam, or oxazepam in patients taking lopinavir/ritonavir

 

 

 

I have to wonder how many of these COVID-19 symptoms such as chronic fatigue are actually the result of mucking around with people's psych drugs. I'm not saying it's not medically necessary to do so or that being acutely ill with COVID-19 couldn't cause chronic fatigue and other withdrawal-type symptoms, but most doctors don't understand how these drugs work regarding withdrawal. Seems like polypharmacy is at least somewhat part of the problem. 

 

[Colonial]

That's a great point, @Shep.

 

Who knows how many meds people are being taken off and for how long.

Then add the issue of other meds added in aggravating what would then be a withdrawal reaction already in progress.