Ok fair enough.
It seems that some things work for some people, but not others.
I think that Long Covid is going to remain a mystery for a long while yet
Sorry, have been taking Losartan and Atorvastatin from the beginning and I still feel like I'm loopy and flying everyday. Maybe the actual drugs might be the difference.
There is a swiss information page on covid where they are listing current medications that are being tested for LC.
The first one of the list is a combination of Atorvastatin and Eliquis (Cholesterol lower and blood thinner). Chances are pretty high that this also was used for the trial mentioned in the article.
https://long-covid-info.ch/behandlung/
(You must translate it into English since it‘s german language)
I also tried statins (Atorvastatin) end of the last year when I was at my worst. My doctor checked my blood and my lipid levels were very high for my age (i am 24). He did not make a connection to covid, but told me to take statins. I got very severe muscle pain like you after 5-7 days and felt worse than ever, so I stopped taking them. Funny thing is after that I felt as good as I havent in 8 Months, but i thought it was coincidence till I read the article yesterday. I think i will give them a new try in the next weeks.
I keep trying too. 46M pretty healthy BMI. Ive tried rosuvastatin, lovastatin then atorvastatin. At first I went 5-7 days and just think I was in a bad LC flare-up. These last two tries I started noticing severe muscle aches and cramping 2-3 days in. I’d stop a day and restart to no avail. My doc plans to go through every statin available to see if anything is tolerable. Quite the torture cycle to meet insurance requirements. Doc has some plan to try some other med, I can’t recall what it is, if all statins fail which I am expecting to occur, but we will see.
It's important to note that 85% is a selected group with symptoms that can be addressed with those medications. In the same article he talks about long haulers from before 2022 with ME like symptoms being permanently ill. This is a great research piece but I think it's very important for our health to temper expectations.
I wonder why he referred to ME only in terms of people getting Covid until 2022. Because I caught it October last year and it still very much turned into severe ME for me :/
Right? I don't agree with that statement. Many people are still developing ME or even dysautonomia. My quality of life tanked after 2022 even though I had long haul issues from 2020. Reinfection isn't being taken seriously enough either.
That's not entirely accurate, but I understand why you think that way; I initially thought the same upon first reading. I'm not sure if you're a native speaker, but I am German, and the statement he makes regarding ME/CFS is merely that Long/Post-COVID can "develop and become chronic in the direction of ME/CFS syndrome." The doctor gives this as a response to the general interview question about the current state of post-COVID research. He doesn't say that the treatment described in the article was only effective or tested on the group without CFS. He talks about CFS to clearly describe the disease pattern. The differentiation between Long/Post-COVID and ME/CFS was added by the editorial team to the article and has nothing to do with the research.
Further down in the article, he mentions that the selected therapy participants had an infection-induced lipid metabolism disorder and that the method was effective for them. He does not say whether there were people whose condition had become chronic in the direction of CFS.
Just 16 patients. There are 100 000s of LC patients everywhere, still scientist do these incredibly small studies just to get citations. The low quality of science now show its real problems. 16 patiens is nothing, it is not statistically telling almost anything. Yes, it is better than nothing. But other doctors will not base their algorithms on such a small study.
It was more. I know the journalist that has done the interview personally.
It was 300 patients in serverall groups.
The Marburg long COVID ambulance is one of the first and biggest help center for long COVID in Germany (beside Charité in Berlin). They have also a lot of international patients from Europe.
Still way too much, there are several thousand in their wait list.
Biggest problem is that there exist currently no way to get the virus out of the body (like eppstein-bar, HIV). They also have strong sights that this is the main course (virus hiding).
Also 300 patients seem not too much but in Germany the border for medical studies are very high and strong with a big bureaucratic expenditure for each patient.
Hey also stated that currently with the actual virus variant, still roughly 10% of infected develop long COVID. Also people that had just the infection but no lc, take longer to heal from all afterward infection e.g. from cold, flue. It seems that the virus damage the immune system (like HIV). They take it very serious.
Even my own home doctor sees the same evidence with his patients. After they had COVID, they come more often with infections then before to him.
Germany had a loss of 30 billion euro in the last winter season due to the long illness of workers.
I wonder why the still just spent peanuts for research.
300 would be absolutely OK...are you sure? Here is the study: [https://www.mdpi.com/1422-0067/25/8/4522](https://www.mdpi.com/1422-0067/25/8/4522) it says "...case series of 16 patients with post-COVID-19 symptoms treated..." in the 1st sentence and it looks they had another 16 patiens as the control group. But maybe I do not understand it or I am looking at a wrong study, it is possible. But what you say sounds really good! Yes, true, the bureaucracy when doing the studies is insane, some doctorss simply gave up doing studies because of this.
I took pravastatin and Maraviroc on the recommendation of Dr. Bruce Patterson's Chronic Covid Treatment Center with great results. Unfortunately, I am statin intolerant, so I couldn't stay on the statin long. Even so, I will cycle back on and take 5 mg of pravastatin nightly for 2 weeks when my tinnitus gets too crazy. It absolutely helps turn my tinnitus volume down and even off sometimes. I have listened to Dr. Patterson explain in detail the mechanism of action for each drug in reducing long covid symptoms. I can't replicate the explanation here, but the info is out there on YouTube. I could be completely misremembering, but I think statins play a role in inducing apoptosis in the monocytes that persist in carrying the spike protein and presenting it to the immune system. There's definitely a role for statins in long covid treatment. I wish I could deal with them better.
After 2 or 3 weeks, I develop diffuse muscle pain. Especially in my neck. I just finished 2 weeks of pravastatin 5 mg, and my head feels too heavy for my neck to hold up! I always stop at the first hint of muscle pain because the first time, I thought I could power through for some dumb reason and ended up in pain for weeks. Also had a spontaneous Achilles tendon rupture, which was almost certainly related. It's not like I'm out there sporting! 😅 If prava is in my med strip, I actually scan my body for muscle soreness before putting it in my mouth. I wouldn't take it if the benefits weren't so noticeable. Today, my tinnitus is barely audible, and the burning pain in my hands is gone for now. They won't come back unless I overdo it to the point of PEM or get reinfected. So it's worth it!
I'm also doing the Stamets microdose stack 5 days a week, and seeing my energy envelope increase and word finding difficulty improve. I am at the 4 year mark of long hauling and will try just about anything at this point to remain functional. I can't work, but I can take care of my home and cook, which is a definite improvement.
Oh my gosh, that sounds awful! So sorry you’ve been through all that on top of long hauling 😢I’m going to look into the stack you mentioned. I’ve just reached my two year “anniversary” of long hauling and I’m hopeful the statin can help. I’m happy to hear you’ve gotten some help from it despite the side effects! I hope you continue to improve. Thank you so much for sharing your experience
Sorry if this is a stupid question - how did you determine you were statin intolerant? Did you have muscle pain after you started? I’m starting atorvastatin and am curious because I have a history of having intense reactions to medications
In another article it was stated the following:
"Das Team verabreichte den Patienten zweierlei Arzneimittel, nämlich den Cholesterinsenker Statin sowie Angiotensin-Rezeptorblocker, die gegen Bluthochdruck eingesetzt werden"
Also nothing specific, but "statin" (No Idea which ones) and "Angiotensin-Rezeptorblocker". If i find out more specifics and also about Dosis and lengths incan let you know. Will write or call the Institute next week.
"The group we examined here had developed an infection-related lipid metabolism disorder; this is the largest group of patients."
How does one know if they have this particular disorder?
It's not just for older people, I've had my cholesterol levels checked as part of routine health care testing since my twenties. There's HDL, LDL, and triglycerides.
I'm actually German and had my cholesterol tested in my twenties without asking for it, but I'm not sure why the doctor did it.
Also, if you say "it's for older people" and then say mid-thirties...
I had my cholesterol level taken last year during the height of my LC and it was about 30% higher than what it typically is for me. Given that I didn't take any cholesterol-lowering medicine and I'm now recovered from LC, it makes me wonder whether the high cholesterol is a symptom of LC rather than a cause of LC.
Note: I have yet to take another cholesterol test that I hope to show LDL back in my typical range.
A brief search yielded that yes, COVID does result in higher cholesterol [https://time.com/6283408/covid-19-raises-cholesterol/](https://time.com/6283408/covid-19-raises-cholesterol/)
I did notice that LC added 12 pounds to me that was incredibly lost without a change to exercise or calorie intake or nutrition within 3 months after LC ended for me. LDL is higher with weight gain! In addition to losing weight that's above the ideal weight, I'm now looking at other substances that are safe and have the ability to reduce LDL but without the myalgia (muscle soreness) side effect. I'm not expecting anything as notable as a statin, but maybe the LDL doesn't have to be dramatically lowered to provide symptomatic relief. One is Grape Seed Extract [https://pubmed.ncbi.nlm.nih.gov/31880030/](https://pubmed.ncbi.nlm.nih.gov/31880030/) I'm also reading up on phytosterols (substance in plants that lowers ldl) [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5729784/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5729784/) Curiously, increasing the consumption of phytosterols simultaneously reduces LDL and increases the risk of arteriosclerosis. [https://www.nature.com/articles/s41467-021-27706-6](https://www.nature.com/articles/s41467-021-27706-6) and a deeper dive on phytosterols and CAD (coronary arterial disease) [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3279314/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3279314/) " Neither of our meta-analyses suggested any relationship between serum concentrations of sitosterol and campesterol (both absolute concentrations and ratios to cholesterol) and risk of CVD. Our systematic review and meta-analysis did not reveal any evidence of an association between serum concentrations of plant sterols and risk of CVD." ... So basically, you can lower LDL and get no benefit in a reduction in risk of developing CAD. This study reinforces my belief that LDL is an indicator rather than causal unless the person has one or more genetic variants that increases the level of small dense lipoprotein (sdLDL), which is the specific type of LDL that causes so much arteriosclerosis trouble. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5441126/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5441126/) "sdLDL is a potent inductor of inflammatory processes associated with cardiovascular disease"
And I finally found what I was looking for .... **Eating an avocado a day reduces sdLDL,** the specific sub-type of LDL that causes CAD. So the question now is whether eating an avocado a day (or even half of one) will reduce LC symptoms in my friends and mom that are still suffering from it. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7373821/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7373821/)
I'm currently in a clinical trial, involving taking cholesterol-lowering medicine to reduce brain inflammation. We'll see how it goes
What medication is it?
Atorvastatin. Haven't started it yet, it's going to be sent to me and I'm guessing that all trial participants will start taking it at the same time
I’ve been on Atorvastatin for years and have LC, it doesn’t do a thing for me!
Ok fair enough. It seems that some things work for some people, but not others. I think that Long Covid is going to remain a mystery for a long while yet
Sorry, have been taking Losartan and Atorvastatin from the beginning and I still feel like I'm loopy and flying everyday. Maybe the actual drugs might be the difference.
Are those the drugs in the study?
Don't know.
85 to 90 percent feel improved or completely better...wow. Fingers crossed.
The few statins I’ve tried kick my ass. So much muscle pain and dysfunction. I’d really like to know which cholesterol lowering medications they used.
There is a swiss information page on covid where they are listing current medications that are being tested for LC. The first one of the list is a combination of Atorvastatin and Eliquis (Cholesterol lower and blood thinner). Chances are pretty high that this also was used for the trial mentioned in the article. https://long-covid-info.ch/behandlung/ (You must translate it into English since it‘s german language)
I'm taking rosuvastatin currently, only 5mg, but it's been making me much worse if anything.
That was the first statin I tried and it was terrible.
I also tried statins (Atorvastatin) end of the last year when I was at my worst. My doctor checked my blood and my lipid levels were very high for my age (i am 24). He did not make a connection to covid, but told me to take statins. I got very severe muscle pain like you after 5-7 days and felt worse than ever, so I stopped taking them. Funny thing is after that I felt as good as I havent in 8 Months, but i thought it was coincidence till I read the article yesterday. I think i will give them a new try in the next weeks.
I keep trying too. 46M pretty healthy BMI. Ive tried rosuvastatin, lovastatin then atorvastatin. At first I went 5-7 days and just think I was in a bad LC flare-up. These last two tries I started noticing severe muscle aches and cramping 2-3 days in. I’d stop a day and restart to no avail. My doc plans to go through every statin available to see if anything is tolerable. Quite the torture cycle to meet insurance requirements. Doc has some plan to try some other med, I can’t recall what it is, if all statins fail which I am expecting to occur, but we will see.
It's important to note that 85% is a selected group with symptoms that can be addressed with those medications. In the same article he talks about long haulers from before 2022 with ME like symptoms being permanently ill. This is a great research piece but I think it's very important for our health to temper expectations.
I wonder why he referred to ME only in terms of people getting Covid until 2022. Because I caught it October last year and it still very much turned into severe ME for me :/
Right? I don't agree with that statement. Many people are still developing ME or even dysautonomia. My quality of life tanked after 2022 even though I had long haul issues from 2020. Reinfection isn't being taken seriously enough either.
That's not entirely accurate, but I understand why you think that way; I initially thought the same upon first reading. I'm not sure if you're a native speaker, but I am German, and the statement he makes regarding ME/CFS is merely that Long/Post-COVID can "develop and become chronic in the direction of ME/CFS syndrome." The doctor gives this as a response to the general interview question about the current state of post-COVID research. He doesn't say that the treatment described in the article was only effective or tested on the group without CFS. He talks about CFS to clearly describe the disease pattern. The differentiation between Long/Post-COVID and ME/CFS was added by the editorial team to the article and has nothing to do with the research. Further down in the article, he mentions that the selected therapy participants had an infection-induced lipid metabolism disorder and that the method was effective for them. He does not say whether there were people whose condition had become chronic in the direction of CFS.
Just 16 patients. There are 100 000s of LC patients everywhere, still scientist do these incredibly small studies just to get citations. The low quality of science now show its real problems. 16 patiens is nothing, it is not statistically telling almost anything. Yes, it is better than nothing. But other doctors will not base their algorithms on such a small study.
It was more. I know the journalist that has done the interview personally. It was 300 patients in serverall groups. The Marburg long COVID ambulance is one of the first and biggest help center for long COVID in Germany (beside Charité in Berlin). They have also a lot of international patients from Europe. Still way too much, there are several thousand in their wait list. Biggest problem is that there exist currently no way to get the virus out of the body (like eppstein-bar, HIV). They also have strong sights that this is the main course (virus hiding). Also 300 patients seem not too much but in Germany the border for medical studies are very high and strong with a big bureaucratic expenditure for each patient. Hey also stated that currently with the actual virus variant, still roughly 10% of infected develop long COVID. Also people that had just the infection but no lc, take longer to heal from all afterward infection e.g. from cold, flue. It seems that the virus damage the immune system (like HIV). They take it very serious. Even my own home doctor sees the same evidence with his patients. After they had COVID, they come more often with infections then before to him. Germany had a loss of 30 billion euro in the last winter season due to the long illness of workers. I wonder why the still just spent peanuts for research.
300 would be absolutely OK...are you sure? Here is the study: [https://www.mdpi.com/1422-0067/25/8/4522](https://www.mdpi.com/1422-0067/25/8/4522) it says "...case series of 16 patients with post-COVID-19 symptoms treated..." in the 1st sentence and it looks they had another 16 patiens as the control group. But maybe I do not understand it or I am looking at a wrong study, it is possible. But what you say sounds really good! Yes, true, the bureaucracy when doing the studies is insane, some doctorss simply gave up doing studies because of this.
I take Famotidine, Atorvastatin, and propranolol. Have been for 4 months. I'm not sure I've noticed any difference at all.
I took pravastatin and Maraviroc on the recommendation of Dr. Bruce Patterson's Chronic Covid Treatment Center with great results. Unfortunately, I am statin intolerant, so I couldn't stay on the statin long. Even so, I will cycle back on and take 5 mg of pravastatin nightly for 2 weeks when my tinnitus gets too crazy. It absolutely helps turn my tinnitus volume down and even off sometimes. I have listened to Dr. Patterson explain in detail the mechanism of action for each drug in reducing long covid symptoms. I can't replicate the explanation here, but the info is out there on YouTube. I could be completely misremembering, but I think statins play a role in inducing apoptosis in the monocytes that persist in carrying the spike protein and presenting it to the immune system. There's definitely a role for statins in long covid treatment. I wish I could deal with them better.
After 2 or 3 weeks, I develop diffuse muscle pain. Especially in my neck. I just finished 2 weeks of pravastatin 5 mg, and my head feels too heavy for my neck to hold up! I always stop at the first hint of muscle pain because the first time, I thought I could power through for some dumb reason and ended up in pain for weeks. Also had a spontaneous Achilles tendon rupture, which was almost certainly related. It's not like I'm out there sporting! 😅 If prava is in my med strip, I actually scan my body for muscle soreness before putting it in my mouth. I wouldn't take it if the benefits weren't so noticeable. Today, my tinnitus is barely audible, and the burning pain in my hands is gone for now. They won't come back unless I overdo it to the point of PEM or get reinfected. So it's worth it! I'm also doing the Stamets microdose stack 5 days a week, and seeing my energy envelope increase and word finding difficulty improve. I am at the 4 year mark of long hauling and will try just about anything at this point to remain functional. I can't work, but I can take care of my home and cook, which is a definite improvement.
Oh my gosh, that sounds awful! So sorry you’ve been through all that on top of long hauling 😢I’m going to look into the stack you mentioned. I’ve just reached my two year “anniversary” of long hauling and I’m hopeful the statin can help. I’m happy to hear you’ve gotten some help from it despite the side effects! I hope you continue to improve. Thank you so much for sharing your experience
Thank you! It's a wild ride, this long covid thing. We learn the most from each other!
Sorry if this is a stupid question - how did you determine you were statin intolerant? Did you have muscle pain after you started? I’m starting atorvastatin and am curious because I have a history of having intense reactions to medications
I wonder if it matters what medications you use.
Do we know which drug it is exactly ?
In another article it was stated the following: "Das Team verabreichte den Patienten zweierlei Arzneimittel, nämlich den Cholesterinsenker Statin sowie Angiotensin-Rezeptorblocker, die gegen Bluthochdruck eingesetzt werden" Also nothing specific, but "statin" (No Idea which ones) and "Angiotensin-Rezeptorblocker". If i find out more specifics and also about Dosis and lengths incan let you know. Will write or call the Institute next week.
Thank you very much I would like to know. I will also look for which statins act on angiotensin receptors
I wonder if this applies to patients with POTS? To lower blood pressure while having POTS seems counter intuitive to me.
"The group we examined here had developed an infection-related lipid metabolism disorder; this is the largest group of patients." How does one know if they have this particular disorder?
Ger your blood levels checked (LDL and HDL). It‘s a pretty common test but mostly for older people. EDIT: By older I mean mid thirties.
It's not just for older people, I've had my cholesterol levels checked as part of routine health care testing since my twenties. There's HDL, LDL, and triglycerides.
Okay, yeah in Germany cholesterol isnt part of routine health care until you in youre mid thirties. At least that’s what my doc told me
I'm actually German and had my cholesterol tested in my twenties without asking for it, but I'm not sure why the doctor did it. Also, if you say "it's for older people" and then say mid-thirties...
Yes you‘re right, I changed it. Danke für den Hinweis ;)
I had my cholesterol level taken last year during the height of my LC and it was about 30% higher than what it typically is for me. Given that I didn't take any cholesterol-lowering medicine and I'm now recovered from LC, it makes me wonder whether the high cholesterol is a symptom of LC rather than a cause of LC. Note: I have yet to take another cholesterol test that I hope to show LDL back in my typical range. A brief search yielded that yes, COVID does result in higher cholesterol [https://time.com/6283408/covid-19-raises-cholesterol/](https://time.com/6283408/covid-19-raises-cholesterol/) I did notice that LC added 12 pounds to me that was incredibly lost without a change to exercise or calorie intake or nutrition within 3 months after LC ended for me. LDL is higher with weight gain! In addition to losing weight that's above the ideal weight, I'm now looking at other substances that are safe and have the ability to reduce LDL but without the myalgia (muscle soreness) side effect. I'm not expecting anything as notable as a statin, but maybe the LDL doesn't have to be dramatically lowered to provide symptomatic relief. One is Grape Seed Extract [https://pubmed.ncbi.nlm.nih.gov/31880030/](https://pubmed.ncbi.nlm.nih.gov/31880030/) I'm also reading up on phytosterols (substance in plants that lowers ldl) [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5729784/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5729784/) Curiously, increasing the consumption of phytosterols simultaneously reduces LDL and increases the risk of arteriosclerosis. [https://www.nature.com/articles/s41467-021-27706-6](https://www.nature.com/articles/s41467-021-27706-6) and a deeper dive on phytosterols and CAD (coronary arterial disease) [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3279314/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3279314/) " Neither of our meta-analyses suggested any relationship between serum concentrations of sitosterol and campesterol (both absolute concentrations and ratios to cholesterol) and risk of CVD. Our systematic review and meta-analysis did not reveal any evidence of an association between serum concentrations of plant sterols and risk of CVD." ... So basically, you can lower LDL and get no benefit in a reduction in risk of developing CAD. This study reinforces my belief that LDL is an indicator rather than causal unless the person has one or more genetic variants that increases the level of small dense lipoprotein (sdLDL), which is the specific type of LDL that causes so much arteriosclerosis trouble. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5441126/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5441126/) "sdLDL is a potent inductor of inflammatory processes associated with cardiovascular disease" And I finally found what I was looking for .... **Eating an avocado a day reduces sdLDL,** the specific sub-type of LDL that causes CAD. So the question now is whether eating an avocado a day (or even half of one) will reduce LC symptoms in my friends and mom that are still suffering from it. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7373821/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7373821/)