New Frightening Discovery About COVID-19 - CLL Support

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New Frightening Discovery About COVID-19

wizzard166 profile image
36 Replies

I just read an article in the Washington Post about doctors around the USA being frightened by a new discovery about the Corona Virus. I wanted to pass this on to our group, in case you are being treated by doctors who are not in contact with the mainstream; in other words, not associated with medical teaching centers.

They are discovering that one of the major factors leading to death and other serious complications is Clotting of the blood. In fact they have found statistically that Asthma patients have not been represented alot in the group with serious response to the virus. Instead it is patients with Cardiovascular disorders. Autopsies are finding immense amounts of small clots all over the body, in the lungs of course, and in the blood vessels. Some have postulated that they should begin to give blood thinners to patients who even are unsymptomatic.

This is a true grave concern with the top medical minds in the country this day, and they are unsure what is causing this and why. This is a link to the article that I just read. I hope it opens up for you. washingtonpost.com/health/2...

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36 Replies
PlanetaryKim profile image
PlanetaryKim

Very interesting! Thanks for sharing.

AKAICUsurvivor profile image
AKAICUsurvivor in reply to PlanetaryKim

I’d heard ( don’t know where from) that ibrutinib may offer some sort of advantage for the same blood thinning characteristic - does anyone know the veracity of this?

JigFettler profile image
JigFettlerVolunteer in reply to AKAICUsurvivor

AZ are trialing Calquance!

Ive no more info.

🤞

Take care

Jig

AdrianUK profile image
AdrianUK in reply to AKAICUsurvivor

Ibrutinib does thin the blood and make you more likely to bleed so less likely to

Clot. It’s why you ideally can’t use other thinning drugs with it. And of course we don’t know for sure if ibrutinib would work specifically against whatever mechanism these clots are being formed by.

PlanetaryKim profile image
PlanetaryKim in reply to AKAICUsurvivor

I think the potential benefit of acalabrutinib/ibrutinib on covid-19 has to do with suppressing cytokine storm rather than altering clotting. Acalabrutinib is being trialed on covid patients for that application: astrazeneca.com/media-centr...

DaleFL profile image
DaleFL

This is very scary.

NavyDavy profile image
NavyDavy

It's due to the resultant cytokine storm increasing the number of procoagulants in the blood and simultaneously decreasing the anticoagulants. This is explained 38 minutes into this lecture, but I do recommend watching from the beginning:

youtube.com/channel/UC6QYFu...

Perseverence may be needed with this lecture and it's not for the faint hearted as it is aimed at medical students and professionals, but he is a good lecturer and 'on the ball'. This is number 3 of his Covid lessons and is up to date with this diseases development. His previous Covid lectures are also recommended.

Interesting piece on how neutrophils are causing major damage within the lungs. Maybe a low neutrophil count could be an advantage....

Davy.

bennevisplace profile image
bennevisplace in reply to NavyDavy

That's one clued up dude in the T shirt and baseball cap.

I read elsewhere how severe Covid infection can lead to many small thromboses in the capillaries of the lung, but not how it does the same in other parts of the body.

It seems the doctors behind that scare story in the Washington Post hadn't heard of this phenomenon.

Thanks for posting.

NavyDavy profile image
NavyDavy in reply to bennevisplace

Ha ha, absolutely, I thought I'd got a skateboarding video clip at first. Did you have to rewind as much as I did?🤪

His previous 2 lectures on Covid are really enlightening too.

Today I found this article that was written 2 weeks ago regarding the clotting phenomenon, so not everyone is sharing the information.

knowablemagazine.org/articl...

Cheers.

bennevisplace profile image
bennevisplace in reply to NavyDavy

Yes a pretty good article, thanks. The author didn't mention BTK inhibitors, but then there are so many drugs on trial at the moment aimed at quelling the storm.

I'm interested in the role of neutrophils, there at the start and finish of the immune response leading to ARDS, the main cause of death in Covid cases. There's a lot to get one's head around...

NavyDavy profile image
NavyDavy in reply to bennevisplace

Neutrophils have 'grabbed' me just recently too and definitely agree with getting one's head around it!😨

bennevisplace profile image
bennevisplace in reply to NavyDavy

Let's compare notes later.

Jm954 profile image
Jm954Administrator

Patients on ICU with COVID will almost certainly be on some sort of anticoagulant, probably unfractionated heparin, which is easy to reverse if bleeding occurs.

Jackie

Big_Dee profile image
Big_Dee

Hello wizzard166

I am not a medical doctor, but I would suggest anyone who takes fish oil to run that by their doctor, particularly those with cardiovascular disorders. Fish oil can cause clumping of platelets.

Lilac45 profile image
Lilac45

I don’t usually post but do get a huge amount out of reading posts, so apologies for jumping in now. My husband is in hospital with covid-19 and is now very unwell. He has lots of clots in his lungs and an infection in his mouth and throat. It’s a horrible illness and it’s impact has been slow to progress in him. We are now 5 weeks in and nothing seems to have turned towards progress but additional problems seem to arrive daily. He isn’t in icu which is a blessing, but is totally immobile and reliant on additional oxygen. The blood clots are being treated with anticoagulants and he is having antibiotics, phosphorous IV and very close monitoring. We just wait for a change. He has gone from being a well (with CLL) healthy and fit man to becoming completely incapacitated in a month. We think he got it a matter of days before we began shielding...

The clots were totally unexpected but it’s interesting to learn from your post that it’s now coming to light as a significant feature. I hope no one else has to experience this.

sllincolorado profile image
sllincolorado in reply to Lilac45

I am so sorry to hear this. I realize that you are in UK so this might not be available, but if he is not currently taking cll treatment you might ask if they can give him acalabrutinib (a cll drug). They are conducting clinical trials with it in US for covid in the pneumonia stages. His docs might be able to get it as a compassionate use treatment. Not sure if he is still on Ublituximab and/or if this would be similar to the acalabrutinib vis-a-vis covid. Sending your husband healing thoughts and thoughts to you and your family during this very difficult time.

Here is an article about it:

forbes.com/sites/nathanvard...

Newdawn profile image
NewdawnAdministrator in reply to Lilac45

I’m so sorry to hear this Lilac, you must be desperately worried. Sending huge best wishes that he can beat this wretched virus.

Please take care of yourself at this dreadful time for you all.

Newdawn

bennevisplace profile image
bennevisplace in reply to Lilac45

So sorry to read of your ordeal. I'm sure I speak for many here in wishing you and your husband the best outcome.

You remind us how important shielding measures are to those with CLL.

wizzard166 profile image
wizzard166 in reply to Lilac45

Lilac I am so sorry to discover the nightmare your husband has gone through, in addition to yourself. It sounds to me that he is a true Fighter, and likely has always been so. I imagine you are not permitted to be visiting in the hospital with him, and that too must be horrible. There is nothing you can do other than take each day one day at a time, and always try to keep an optimistic projection of what is going to be. Lets hope today is the turn around.

Mystic75 profile image
Mystic75 in reply to Lilac45

Lilac, I am so sorry that your husband is going through this as well as you. Please keep us updated on his condition. Will be thinking of you and your husband during this very difficult time.

💖

D.

Lilac45 profile image
Lilac45

Thanks everyone, your thoughts and wishes are much appreciated. We are just hoping it can turn. I’m always amazed how much people go through on this site and how they do recover from some very low lows- it’s always so helpful to hear about others’ experiences. I’ll let you know how things develop.

All the best to everyone in the community.

bennevisplace profile image
bennevisplace

I think this is explained pretty well in Navy Davy's post.

AussieNeil profile image
AussieNeilAdministrator

Here is the Medical News Today coverage of the faulty blood clotting mechanism: medicalnewstoday.com/articl...

maggiesgrandmom profile image
maggiesgrandmom in reply to AussieNeil

So Neil, does that mean those of us with low platelets are more at risk due to hyperfibrinolysis or are we less of a risk because we are prone to bleed?

AussieNeil profile image
AussieNeilAdministrator in reply to maggiesgrandmom

Hopefully, there won't be enough CLL cases to find out.

morepork profile image
morepork

Would this also explain the strange phenomenon they are seeing in the toes of children - discoloured red and with blister-like skin lesions - being called "Covid Toes.

wizzard166 profile image
wizzard166

Hey Morepork. If you live in America, my condolences; since, they recently shut down the largest Pork plant in the States. I think it was with Tyson Foods in Waterloo Iowa.

I'm not sure if that situation with kids toes is due to these clots, but it certainly could be. Broadway star Nick Cordero had his leg amputated due to gangrene type problems caused by clots in the leg from COVID-19.

It fascinates me that all of these findings of clots causing strokes in young adults with COVID 19, and autopsies showing now hundreds of small type clots in lungs and heart vessels, is just now being found. Is it that the Virus has mutated and this is a new way it has to attack its host?, or were they just not aware of the problems because the onslaught of the entire problem was so overwhelming. In any case, it is a problem now.

PaulaS profile image
PaulaSVolunteer

A couple of days ago I had my 3 month haematology appointment (on the phone). My bloods were stable so there wasn't much to be discussed, but I did ask my consultant if he'd had any CLL patients with Covid. He said he'd had several - as well as some with other leukaemias, but the CLL ones were all recovering and left hospital now.

So, that was good to know. I wish now, that I'd asked him if any were on Ibrutinib and whether he thought that had helped them, but I didn't think of it at the time.

Paula

wizzard166 profile image
wizzard166 in reply to PaulaS

Thanks for the input Paula. Yours is the first information I've had a chance to see regarding CLL Patients and COVID 19, and it is heart warming to see that some you know about have recovered. I'm the one who put up the two Posts on this site; one about low immunity maybe helping us with COVID, and the other about CLL Medications maybe stopping the virus from entering the receptor sites in the lung tissues. I'm really anxious to see good data with enough cases to give me a confirmation of these ideas, but even a few cases making it through a fight with the virus is encouraging alone.

alexmcg48 profile image
alexmcg48

There was someone in the last week who had Covid 19 & recovered & recently released from hospital was interviewed on the BBC. He said whilst he was recovering he still had small clots in his lungs & he was on medication (I assume something like Warfarin) for the next 2 months to deal with these which seems to tie in with the Washington Post article.

wizzard166 profile image
wizzard166 in reply to alexmcg48

Good input Alex. I began wondering upon reading the Washington Post article about clots, if our low platelet level actually might help. Even though we would be subject to clots, maybe smaller ones and in smaller amounts. Of course even the tiniest of clots can clog a very tiny blood vessel in the brain and cause a stroke.

alexmcg48 profile image
alexmcg48 in reply to wizzard166

Not clever enough to answer on platelets, but his clots were in the lungs & from what I understand of the disease it seems to swamp the lungs at it's worst & assume this is the clotting of them & I believe his clots were what's left & need to be dealt with, so they're giving him blood thinners.

People who don't have their lungs affected seem to be the ones that don't need hospitalising.

Canuck901 profile image
Canuck901

Yeah I heard that as plus they are not testing dead bodies for covid 19 , there are 500-1000 a day dying from cardiac arrest in homes etc not being counted.

High blood pressure and heart jssues are

Extremely high risk

wizzard166 profile image
wizzard166 in reply to Canuck901

Ive of course like you read that High Blood Pressure, Obesity, and Cardiac issues are really high risk; of course, those three combine to kill due to almost any attack on the body. In the same way they said the elderly are at great risk. Being elderly is a generic classification for dying any time too from anything.

Seperating the wheat from the chaffe, the things I have noticed from a ton of articles is the severe inflamation in the lung tissue, which has resulted in shut down of the respiratory system more than normal respiratory infection. That they feel might be due to an over reactive immune system attacking the bug and our own tissues. The second thing seems to be this huge multitude of small blood clots all over the body, and of course that presents a grave complication in the small vessels around and in the heart.

Canuck901 profile image
Canuck901 in reply to wizzard166

Makes sense a lot of people with covid 19 get variiis sores in their feet and elsewhere could be due to the clotting ? A lot of people in there 40 and 50s have high blood pressure , hypertension North America society people at fast food , drink lots of coffee , and do not exercise enough so it’s not just the elderly at risk here.

WalkTheLine profile image
WalkTheLine

Hi Wizzard166

I am in the UK and 10years CLL. I take Apixaban 5mg. twice daily to help avoid/alleviate this kind of problem and have done for several years. I guess this might be something most CLL (and other) patients will want to discuss with their care team. I wish you safe and well.

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