Already 15 years ME - now covid

Luxintenebrislucet

Luxintenebrislucet

Messages
78
I have been sick with ME for 15 years. Progressively got worse and worse to moderate-severe and developed other autoimmune illnesses.
About 2 weeks ago i catched covid ( my bf came home positive and with symptoms with a mask on and when i woke up and wanted to run away to an hotel it was too late- he was already 5 hours at home infecting the air . A day later i was sick and positive ) and i had to be hospitalised. I already had very low leukocytes and lymphocytes so i was lucky to get a single dose of monoclonal antibodies. After hospital my bf got Paxlovir for me from his doctor ( big luck too ) and i quickly recovered from bronchitis and covid symptoms.
But i am still very weak and bedridden. I take everything i can to heal( cistus, vitamins, vitamin D, vitamin c, zink, aspirine etc) and i am going to give Ivermectine a try- but i am terrified i develop long covid.
I already had very thick blood and endothelial disfunction because of ME ( i guess viruses i couldnt treat , antivirals are expensive) so i cant imagine adding this thick blood and endothelial damage from long covid.
I am not vaxxed-
Anybody had covid on top of ME and how did you recovered? Its normal that it takes so long time?
 
GlassCannonLife

GlassCannonLife

Senior Member
Messages
819
I'm currently one month after I pretty much got over covid and crashed extremely badly. Using pregnenolone and cumin as PEM blockers but I went from housebound to almost completely bedbound (despite having all the support from the preg and cumin).

I think I'm going to go to the hospital next week actually to get admitted and tested and see if there's something they can do to help. I haven't had any progress in the last month.. Got worse after the first 10 days actually and have stayed pretty much the same since then.

I just started ivermectin today (0.4 mg/kg) so I'll see how I go over the next few days and decide about the hospital on Monday. Been very hard to decide as I'm already so disabled I'm worried I'll get even worse and stay that way permanently..


@elvira is in a similar situation but I think she has maybe improved a little since the peak of her crash.
 
elvira

elvira

Senior Member
Messages
146
Yeah i also have a bad covid experience and am afraid of the long term consequences... I had started to get a bit better from my crash but now my fever is higher again (after starting LDN to try and support my immune system) so don’t really know what’s going on. I’m waiting for Ivermectin. I wish paxlovid was available in Sweden!
 
BrightCandle

BrightCandle

Senior Member
Messages
1,214
Took me quite long to recover from the covid crash, about 1.5 years and the bottom was pretty severe but I am back to where I was before I caught Covid. No part of that can I ascribe to anything a doctor did (they refused to see me for the past 2 years) so just testing the various theories posted here and keeping what worked.
 
BrightCandle

BrightCandle

Senior Member
Messages
1,214
godlovesatrier said:
I remember last we spoke you were at about 60% Bright. So you gone past that now?

Did anything really help more than the joshua leisk protocol since we last spoke?
Click to expand...

I am 60-80% and while fluctuating improving gradually. Its insane how far I have improved since last October. Still doing HASD v3.2 minus the reishi but also address 3 other theories. The blood clots theory using Lumbrokinase, Bromelain and grape seed extract. For the Kidney infection theory I am still maintaining Cherry supplements. For the microbiome theory I am taking Curcumin, Sodium Butyrate as well as probiotics pills and then probiotic foods in the form of kefir, kombucha, kimchi and custom yoghurts made on bifiodumbacterium and L Reutri. There was also a trial in the UK on BCAA with some additional amino acids which I roughly matched with a BCAA mix called Mutant and I don't use it all the time but it also seems to lift me if I am feeling lethargic.

For my deficiencies as measured I am taking copper, magnesium, Zinc and maganese. Then I have a few other oddities in there like some DHEA, Apple cider vinegar and Reservatol which all came from Joshua and solve individual issues around Glucose headaches. Then sleep is fixed with 5-HT and melatonin.

I have dropped a bunch of things that didn't work but this combination really does and everytime I miss a bitI feel worse. My biggest problem at the moment is backpain, ever since I missed a cherry supplement for a few days my back has been injured but I am otherwise playing games and watching TV and potting around. I don't think I am house bound anymore I just haven't pushed to see what I can do, I might be able to work I can certainly code again anyway just not at the level I was 7 years ago. Feeling a lot better honestly, still following the get better or die trying strategy.
 
godlovesatrier

godlovesatrier

Senior Member
Messages
2,612
Location
United Kingdom
Hey mate,

So pleased you're doing so well. I'm between 70 and 80 at the moment myself. We don't sound too different.

Like you I added gse and found huge relief from all abdominal issues with solaray 24 strain (which has worked well for me for over 8 months).

I've just started the tincture for resveratrol. I had some from TIME but I was herxing like an soab on that stuff. Was too much for me.

Like you I've also added zinc and copper because oat bran binds zinc and copper! Which might explain my sudden neutropenia.

Hope you continue to like me stay roughly at 80%.
 
Last edited:
GlassCannonLife

GlassCannonLife

Senior Member
Messages
819
BrightCandle said:
I am 60-80% and while fluctuating improving gradually. Its insane how far I have improved since last October. Still doing HASD v3.2 minus the reishi but also address 3 other theories. The blood clots theory using Lumbrokinase, Bromelain and grape seed extract. For the Kidney infection theory I am still maintaining Cherry supplements. For the microbiome theory I am taking Curcumin, Sodium Butyrate as well as probiotics pills and then probiotic foods in the form of kefir, kombucha, kimchi and custom yoghurts made on bifiodumbacterium and L Reutri. There was also a trial in the UK on BCAA with some additional amino acids which I roughly matched with a BCAA mix called Mutant and I don't use it all the time but it also seems to lift me if I am feeling lethargic.

For my deficiencies as measured I am taking copper, magnesium, Zinc and maganese. Then I have a few other oddities in there like some DHEA, Apple cider vinegar and Reservatol which all came from Joshua and solve individual issues around Glucose headaches. Then sleep is fixed with 5-HT and melatonin.

I have dropped a bunch of things that didn't work but this combination really does and everytime I miss a bitI feel worse. My biggest problem at the moment is backpain, ever since I missed a cherry supplement for a few days my back has been injured but I am otherwise playing games and watching TV and potting around. I don't think I am house bound anymore I just haven't pushed to see what I can do, I might be able to work I can certainly code again anyway just not at the level I was 7 years ago. Feeling a lot better honestly, still following the get better or die trying strategy.
Click to expand...

What cherry supplements do you mean? Tart cherry? Is that the Markov theory about the kidneys?

I unfortunately didn't feel any benefit from the HASD protocol aside from an initial boost for a couple of weeks that then levelled out and was lost in the noise.

What's your sodium butyrate source?
 
BrightCandle

BrightCandle

Senior Member
Messages
1,214
GlassCannonLife said:
What cherry supplements do you mean? Tart cherry? Is that the Markov theory about the kidneys?
Click to expand...

Yes Tart Cherry and it is indeed the CBIS Markov theory around the kidneys that its based on. It was a recommended holding treatment before autovaccines and I tested the impact and found no bacteria coming out when using it.

GlassCannonLife said:
I unfortunately didn't feel any benefit from the HASD protocol aside from an initial boost for a couple of weeks that then levelled out and was lost in the noise.

What's your sodium butyrate source?
Click to expand...

I have been using BodyBio from amazon.
 
GlassCannonLife

GlassCannonLife

Senior Member
Messages
819
BrightCandle said:
Yes Tart Cherry and it is indeed the CBIS Markov theory around the kidneys that its based on. It was a recommended holding treatment before autovaccines and I tested the impact and found no bacteria coming out when using it.



I have been using BodyBio from amazon.
Click to expand...

Oh cool, as in Markov recommends doing that? And then you'll do autovaccines at some point later? What amount of tart cherry do you use? How many times per day etc? Thanks! Sorry about all the questions
 
BrightCandle

BrightCandle

Senior Member
Messages
1,214
GlassCannonLife said:
Oh cool, as in Markov recommends doing that? And then you'll do autovaccines at some point later? What amount of tart cherry do you use? How many times per day etc? Thanks! Sorry about all the questions
Click to expand...

Dr Marklov recommended ish, I think it is more a "do it and it will reduce the bacteria" kind of thing but the recommended thing to do is autovaccines.

I will now do autovaccines I am completely convinced this is an important part of my condition and treating it will likely treat me. As I change the bacteria in my gut, as I change the bacteria coming out of my kidneys I see improvements to the very core of my condition that are lasting, I am quite convinced my issue is chronic bacteria infections of some description. Alas the current situation in Ukraine and with the clinic shut does make things a lot more difficult since its not a common treatment. On top of that the standard autovaccine solutions are probably tricky to buy with sanctions as well although probably the only practical solution for a while and what I shall look to pursue.

My current Tart cherry dose is 2x recommended which IIRC is 4800 mg daily. So I am on 9600mg. I got most of the effect on the 4800mg and the 9600mg is a recent test which hasn't proven more effective. I was taking it once a day, I have recently been taking 3 doses, once daily is fine with food.
 
GlassCannonLife

GlassCannonLife

Senior Member
Messages
819
BrightCandle said:
Dr Marklov recommended ish, I think it is more a "do it and it will reduce the bacteria" kind of thing but the recommended thing to do is autovaccines.

I will now do autovaccines I am completely convinced this is an important part of my condition and treating it will likely treat me. As I change the bacteria in my gut, as I change the bacteria coming out of my kidneys I see improvements to the very core of my condition that are lasting, I am quite convinced my issue is chronic bacteria infections of some description. Alas the current situation in Ukraine and with the clinic shut does make things a lot more difficult since its not a common treatment. On top of that the standard autovaccine solutions are probably tricky to buy with sanctions as well although probably the only practical solution for a while and what I shall look to pursue.

My current Tart cherry dose is 2x recommended which IIRC is 4800 mg daily. So I am on 9600mg. I got most of the effect on the 4800mg and the 9600mg is a recent test which hasn't proven more effective. I was taking it once a day, I have recently been taking 3 doses, once daily is fine with food.
Click to expand...
So the tart cherry helps your ME in general? Symptomatically I mean
 
GlassCannonLife

GlassCannonLife

Senior Member
Messages
819
BrightCandle said:
I am 60-80% and while fluctuating improving gradually. Its insane how far I have improved since last October. Still doing HASD v3.2 minus the reishi but also address 3 other theories. The blood clots theory using Lumbrokinase, Bromelain and grape seed extract. For the Kidney infection theory I am still maintaining Cherry supplements. For the microbiome theory I am taking Curcumin, Sodium Butyrate as well as probiotics pills and then probiotic foods in the form of kefir, kombucha, kimchi and custom yoghurts made on bifiodumbacterium and L Reutri. There was also a trial in the UK on BCAA with some additional amino acids which I roughly matched with a BCAA mix called Mutant and I don't use it all the time but it also seems to lift me if I am feeling lethargic.

For my deficiencies as measured I am taking copper, magnesium, Zinc and maganese. Then I have a few other oddities in there like some DHEA, Apple cider vinegar and Reservatol which all came from Joshua and solve individual issues around Glucose headaches. Then sleep is fixed with 5-HT and melatonin.

I have dropped a bunch of things that didn't work but this combination really does and everytime I miss a bitI feel worse. My biggest problem at the moment is backpain, ever since I missed a cherry supplement for a few days my back has been injured but I am otherwise playing games and watching TV and potting around. I don't think I am house bound anymore I just haven't pushed to see what I can do, I might be able to work I can certainly code again anyway just not at the level I was 7 years ago. Feeling a lot better honestly, still following the get better or die trying strategy.
Click to expand...

BTW do you mean grapefruit seed extract (like the nutribiotic one on iherb?) or actually grape seed extract? What dosage of that do you take? Cheers!
 
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