I’m looking forward to reading more of the treatment you mentioned. My long COVID commenced following my second bout of COVID last year, but I was also tested positive for Lyme disease within a couple of weeks, which I had antibiotic treatment for. I’m in Australia and a member of a large online cohort of LC sufferers. A couple of members have taken the physically demanding trip to Cyprus to undergo aphaeresis treatment - with considerable success. But they were severely unwell with LC too. Have you heard of this or know of anyone who has had this treatment?
Oh wow - how’d you feel after finishing the antibiotics for the Lyme? Still having long haul symptoms?
I’ve only known one other long hauler who went to Germany from the U.S. for apheresis. He became extremely ill from it and once he “recovered” from that experience, he found he was set back even further re: his long COVID symptoms. But this was two years ago now. I’ve heard better things since. But it’s still not offered in the U.S.
The antibiotics for Lyme worked well because the sleeplessness that I had been experiencing stopped. All my other symptoms seem to be associated with LC - PEM, disautonomia, MCAS. Your cited experience of apheresis is interesting. It seems the treatment in Cyprus is working well for people, particularly those who are seriously ill.
“Mostly I've seen anecdotal material and the plural of anecdote is not data.” - I would mostly agree with this statement. The only time I wouldn’t entirely is in our case when there’s a novel virus and a somewhat novel long tail version, research will take years to come up with the data, and in the age of social media, you can be connected to thousands of others in a similar (though not same, to be clear) boat as yours who are throwing the off-label spaghetti against the wall themselves (or with their docs) to see what sticks. A good example would be Bruce Patterson. His early research and testing/treatment helped a lot of people (including me). Some got entirely better; others made significant gains. Some also didn’t get better at all or crashed after getting better (me). But in the absence of all the data on causes/mechanisms, it was a bit of hope and for some, it was essentially a cure.
This is so interesting and exactly what I was told and anticipated upon accidentally contracting it a second time. Instead I have experienced a completely bizarre resolution of most of my long COVID symptoms, but most noticeable the brain injury after having it the second time. However, the working theory with me and the Dr’s is that they prescribed me paxlovid almost immediately bc of the history of long COVID and that may have assisted in resolving some of the nonsense (read inflammation) that I had for the first infection, some of which might have been effecting my brain. I don’t know, and am not in any way licensed, but it was a trippy experience.
I’ve also backslid a bit since revolving the second time. It’s a nasty disease. Zero stars do not recommend.
So interesting, Dania! I bet it was the Pax. It’s being trialed right now at Yale, a 15 day course for long haulers to see if it helps. I was ineligible for the study because I tested negative in March 2020 (side story about the frustration of a positive test still being a requirement for research studies, but that’s another post). But my functional medicine doc was willing to prescribe it to me last week. It would have only been a five day course because that’s all my insurance would cover. But then I got the approval to do the IVIG treatments so now trying Pax is off the table, at least for now.
What are your current backslid symptoms, if you don’t mind saying?
So massive brain fog and almost no working short term memory were really strong in the few months after my initial infection, and fatigue. After Pax, I felt an almost complete return of cognitive function, but since then - especially if I’m overtired I’ll experience word finding trouble. Also, I had challenges swallowing after initial infection. That also resolved after pax but has since crept back in. Sleep disruption too, but honestly, I’ve never been a great sleeper, and that could have to do with so many other things. It can be a bit hard to pinpoint.
Yes, the full systemic disruption from COVID and how it can vary body to body is so challenging. It took me 9 months to get long COVID confirmed.
Yes, looking into thyroid now, but I don’t have any other markers. But digestive system is also wacky as is hormonal system so we have been slowly testing and eliminating stuff. 🤷🏻♀️
I hope you can get more answers soon. The digestive stuff is also really challenging. It feels like there’s no bodily system that goes untouched here 😔
Hmmm...maybe the Pax cleared out the viral debris but you were left with some damage. The overtired/broken brain thing is super real for me too. It’s really frustrating. I’m sorry that it’s happening to you again.
The difficulty swallowing with no apparent structural cause could be a symptom of dysautonomia, or potentially thyroid issues. Have you had it checked out? I had Hashimoto’s well before COVID but in year three, my metabolic markers have all gone haywire: pre-diabetes, high cholesterol, TSH all over the map in spite of being treated. Wacky stuff!
My general practitioner here in the UK told me back in February that after having had Covid three times I could be assured that I was suffering Long Covid. I have since had Covid yet again (I should be an expert at this) and my Long symptoms are definitely worse now. Avoid, avoid, avoid!
Yeah, I mean with the research showing that even those who had COVID but didn’t feel any long haul symptoms having peripheral damage to vascular system and immune functioning, I wish more people understood that no one is really getting by unscathed. For the first year of my illness, my Facebook posts were all about trying to get folx to take this seriously just based on what I was going through. But I think it’s a bit of human nature to think we’re invincible. In fact, the day before my first symptom, I recorded a video for my staff where I said I wasn’t afraid of a virus 🤦🏼♀️. Ughhhhh.....
Of course, I am sure you're familiar with mitochondrial dysfunction, think Topol wrote about this. Hopefully,now that the data strongly support this, we might see some therapeutic remedies ahead.
I’ve been reading so much in the past six months about mitochondrial dysfunction in both LC and ME/CFS, and starting specific supplementation for it. My MitoSwab test last year came back showing dysfunction, but my FMD had me on piecemeal supplementation. Now I’m trying Energenesis powder by Ari Whitten’s company, The Energy Blueprint. Soon to start red and near-infrared light therapy too.
Check out Mardi’s newsletter if you don’t already; she talks a lot about mitochondria and even recovered by addressing this.
I’m looking forward to reading more of the treatment you mentioned. My long COVID commenced following my second bout of COVID last year, but I was also tested positive for Lyme disease within a couple of weeks, which I had antibiotic treatment for. I’m in Australia and a member of a large online cohort of LC sufferers. A couple of members have taken the physically demanding trip to Cyprus to undergo aphaeresis treatment - with considerable success. But they were severely unwell with LC too. Have you heard of this or know of anyone who has had this treatment?
Oh wow - how’d you feel after finishing the antibiotics for the Lyme? Still having long haul symptoms?
I’ve only known one other long hauler who went to Germany from the U.S. for apheresis. He became extremely ill from it and once he “recovered” from that experience, he found he was set back even further re: his long COVID symptoms. But this was two years ago now. I’ve heard better things since. But it’s still not offered in the U.S.
The antibiotics for Lyme worked well because the sleeplessness that I had been experiencing stopped. All my other symptoms seem to be associated with LC - PEM, disautonomia, MCAS. Your cited experience of apheresis is interesting. It seems the treatment in Cyprus is working well for people, particularly those who are seriously ill.
This is an area of unproven Tx thus far but more data is needed. This is not easy to obtain.
https://www.nature.com/articles/s41380-023-02084-1
(Interesting, no mention of mitochondrial dysfunction)
There is also a risk involved and considered experimental.
https://www.medicalnewstoday.com/articles/long-covid-experts-concerned-about-rise-in-blood-washing-treatments
Mostly I've seen anecdotal material and the plural of anecdote is not data.
Interesting Lyme was mentioned as I mentioned in my piece insubstack about Post-Treatment Lyme Disease Syndrome (PTLDS)
“Mostly I've seen anecdotal material and the plural of anecdote is not data.” - I would mostly agree with this statement. The only time I wouldn’t entirely is in our case when there’s a novel virus and a somewhat novel long tail version, research will take years to come up with the data, and in the age of social media, you can be connected to thousands of others in a similar (though not same, to be clear) boat as yours who are throwing the off-label spaghetti against the wall themselves (or with their docs) to see what sticks. A good example would be Bruce Patterson. His early research and testing/treatment helped a lot of people (including me). Some got entirely better; others made significant gains. Some also didn’t get better at all or crashed after getting better (me). But in the absence of all the data on causes/mechanisms, it was a bit of hope and for some, it was essentially a cure.
This is so interesting and exactly what I was told and anticipated upon accidentally contracting it a second time. Instead I have experienced a completely bizarre resolution of most of my long COVID symptoms, but most noticeable the brain injury after having it the second time. However, the working theory with me and the Dr’s is that they prescribed me paxlovid almost immediately bc of the history of long COVID and that may have assisted in resolving some of the nonsense (read inflammation) that I had for the first infection, some of which might have been effecting my brain. I don’t know, and am not in any way licensed, but it was a trippy experience.
I’ve also backslid a bit since revolving the second time. It’s a nasty disease. Zero stars do not recommend.
So interesting, Dania! I bet it was the Pax. It’s being trialed right now at Yale, a 15 day course for long haulers to see if it helps. I was ineligible for the study because I tested negative in March 2020 (side story about the frustration of a positive test still being a requirement for research studies, but that’s another post). But my functional medicine doc was willing to prescribe it to me last week. It would have only been a five day course because that’s all my insurance would cover. But then I got the approval to do the IVIG treatments so now trying Pax is off the table, at least for now.
What are your current backslid symptoms, if you don’t mind saying?
So massive brain fog and almost no working short term memory were really strong in the few months after my initial infection, and fatigue. After Pax, I felt an almost complete return of cognitive function, but since then - especially if I’m overtired I’ll experience word finding trouble. Also, I had challenges swallowing after initial infection. That also resolved after pax but has since crept back in. Sleep disruption too, but honestly, I’ve never been a great sleeper, and that could have to do with so many other things. It can be a bit hard to pinpoint.
Yes, the full systemic disruption from COVID and how it can vary body to body is so challenging. It took me 9 months to get long COVID confirmed.
Yes, looking into thyroid now, but I don’t have any other markers. But digestive system is also wacky as is hormonal system so we have been slowly testing and eliminating stuff. 🤷🏻♀️
I hope you can get more answers soon. The digestive stuff is also really challenging. It feels like there’s no bodily system that goes untouched here 😔
Hmmm...maybe the Pax cleared out the viral debris but you were left with some damage. The overtired/broken brain thing is super real for me too. It’s really frustrating. I’m sorry that it’s happening to you again.
The difficulty swallowing with no apparent structural cause could be a symptom of dysautonomia, or potentially thyroid issues. Have you had it checked out? I had Hashimoto’s well before COVID but in year three, my metabolic markers have all gone haywire: pre-diabetes, high cholesterol, TSH all over the map in spite of being treated. Wacky stuff!
My general practitioner here in the UK told me back in February that after having had Covid three times I could be assured that I was suffering Long Covid. I have since had Covid yet again (I should be an expert at this) and my Long symptoms are definitely worse now. Avoid, avoid, avoid!
Yeah, I mean with the research showing that even those who had COVID but didn’t feel any long haul symptoms having peripheral damage to vascular system and immune functioning, I wish more people understood that no one is really getting by unscathed. For the first year of my illness, my Facebook posts were all about trying to get folx to take this seriously just based on what I was going through. But I think it’s a bit of human nature to think we’re invincible. In fact, the day before my first symptom, I recorded a video for my staff where I said I wasn’t afraid of a virus 🤦🏼♀️. Ughhhhh.....
I would think with other infectious diseases, a similar thing happens with repeated bouts.
Just passing this along in case you haven't seen it.
https://jamanetwork.com/journals/jamaotolaryngology/fullarticle/2809346
Of course, I am sure you're familiar with mitochondrial dysfunction, think Topol wrote about this. Hopefully,now that the data strongly support this, we might see some therapeutic remedies ahead.
Glad you survived your IGIV!
Thanks! We’ll see what happens re: IVIG 🤞🏻
I’ve been reading so much in the past six months about mitochondrial dysfunction in both LC and ME/CFS, and starting specific supplementation for it. My MitoSwab test last year came back showing dysfunction, but my FMD had me on piecemeal supplementation. Now I’m trying Energenesis powder by Ari Whitten’s company, The Energy Blueprint. Soon to start red and near-infrared light therapy too.
Check out Mardi’s newsletter if you don’t already; she talks a lot about mitochondria and even recovered by addressing this.
https://substack.com/@longcovidjourney2wellness