Could it be Long Covid

[Hope_eternal]

I just don’t know what to trust anymore. The functional doctor we just started seeing tested my son’s Covid antibodies, they were 15k+. He says he’d like them to be in the 120s so he’s quite high. He thinks this is at play with the ME/CFS and wants him to start a despike protocol. Anyone here been diagnosed with long Covid? How did they determine it? He also took him off the LDN for now.. said since he took a big back slide once he started it that it’s not worth pursuing. So now he’s starting him on Transfer Factor Classic, monolaurin and Cordychii. After some time on those he will start him on the despike protocol to lessen the spike burden. Just don’t know what to think. I hope it helps him and we are on the right track. Can’t find much info on how it is determined someone has Long Covid. I always thought it might be a factor though. It feels like an impossible puzzle. I’m afraid to get my hopes up.

 

[andyguitar]

Can’t find much info on how it is determined someone has Long Covid.

Depends what sort of medical advisor you consult. First step would probably be to rule out any other cause for the symptoms.

 

[wabi-sabi]

The functional doctor we just started seeing tested my son’s Covid antibodies, they were 15k+.

This is not how you diagnose long COVID. It's a diagnosis made based on having had COVID and a certain set of symptoms. The number of antibodies you have is (probably) irrelevant. I just went to an NIH talk today and they are still researching whether there is lingering virus or not.

There is no despike protocol. This is pure snake oil. Everyone is working on how to treat long COVID and no one quite knows yet. A reputable doc will explain this to you, not try to sell you a protocol. Functional medicine docs run more tests than other docs because the tests the run are mostly meaningless and cannot be used to guide treatment.

One way to identify snake oil is when the best scientists in the world, CDC, NIH, our own ME/CFS experts say they don't know, then no one ones and anyone who tells you they do is as the Princess Bride says, lying or selling something.

 

[kushami]

As @wabi-sabi said, there’s no specific test for Long COVID, and no specific treatment.

https://www.abc.net.au/news/2024-08-13/no-single-test-to-diagnose-long-covid/104213516

It’s similar to ME/CFS in that you can only look at the symptoms and test and treat component parts, e.g. you might test for orthostatic intolerance or small fiber neuropathy.

Edit to add: Also, I don’t think antibody levels matter much in the scheme of things unless they are so low (or non-existent) as to indicate an immune deficiency diagnosis, which would need to be made by an immunologist.

 

[wabi-sabi]

You're in such a difficult situation since your son has so many things going on with the Crohn's and the ME/CFS. It takes a sensitive and expert clinician to figure out which symptoms are coming from what and how to treat them. Those people are hard to find and it's so scary being lost and not knowing what to do. The test this person did and the treatment they are offering you is not real. It's just taking advantage of your confusion and fear. Even if they mean well, it's still a fake test and a fake treatment. That just means they don't know enough to know how to really help.

 

[Hope_eternal]

@andyguitar @wabi-sabi @kushami Thank you all for your responses. I understand where you all are coming from and will further investigate if whether it makes sense to try the treatment. I’ve been reading more about the protocol developed by Dr Peter McCollough. Here’s a link if anyone is interested in reading about him and the treatment.

https://www.petermcculloughmd.com/

We have been turned away by every doctor in mainstream western medicine and were basically told they have no treatment at all for him other than sleep meds and stimulants. His primary symptoms have always been severe fatigue (bedbound for 2 years), PEM and sleep issues.

His Crohns is being controlled through a special diet at this time. So no meds for that right now. Hopefully things will continue positively. He’s only been on it since August but all his Crohns markers have been really great. Even better than when he was on meds. The diet is a lot of work but worth it!

I’m trying not to get discouraged Thanks again for your responses.

 

[ilivewithcfs]

CFS and long COVID are very similar in nature, as far as I know. Treatments, that target spike protein have helped me great deal (ivermectin and bromelain+NAC). I'm still very sick because I wasn't able to tolerate these treatments long term. IMO, trying this despike protocol is worth a shot.
I'm not a doctor, so take everything I say with a grain of salt, obviously.

 

[almost]

I just don’t know what to trust anymore.

Nothing. Most of the things we're dealing with here sail in a sea where research is still being done and little is agreed upon. When the science isn't agreed upon, then what you do is part of the 'trial.' It is what many of us do every day. I think you are looking for order where there is none. Unfortunately, in my opinion, there is no substitute for learning as much as you can of the science behind these conditions for yourself. That's the only way I've found to sort some of the facts around my own case.

You didn't provide the units of the 15k, so it's hard to know what that means. 15k what? Was this an IgG level? High may not be a bad thing. Has he had Covid recently? If so, it may mean he's still carrying a healthy natural immunity. Again, though, the units matter.

Recently, specialists have published new scientific evidence in top peer-reviewed science journals. These new data show that, when patient samples were analyzed with the semi-quantitative assay that Labcorp is running, higher levels of antibodies correlated with higher levels of neutralizing antibodies, which, in turn, have been correlated with increased protection from infection, reinfection and severe disease .1,2

Additionally, specialists found that when it comes to the neutralization of SARS-CoV-2, at least in this context, more seems better. In response, Labcorp has updated the reportable range of its semi-quantitative assay from 2500 Units/mL to 25,000 Units/mL to support reporting of levels higher levels of antibodies.

https://www.labcorp.com/coronavirus...n/covid-19-antibody-levels-more-may-be-better

You're trying something new. It may work, it may not. My only concern here would be if the doc is trying to reduce his antibody level, why? Again though, since I don't know all the particulars, I'll leave things there.

If this doesn't work, then try something else.

It feels like an impossible puzzle.

It does feel like that, yet the reality: A puzzle? Yes. Impossible? No.

Blessings.

 

[Hope_eternal]

@almost I’ve attached his spike result. I haven’t had time to research exactly what it means but the doctor said it references amount of spike detected in his bloodstream and that it is way too high, although he has seen it in the 30 thousands so it’s not the highest he’s treated. I just met with the doctor on Wed so I plan to do more digging this weekend. I have no idea as to what the results mean :/ My son had 3 Covid shots in 2021 and got Covid in 2022.

 

[almost]

@almost I’ve attached his spike result.

Thank you. That helps. The 'units' I was referring to is the U/mL in the attachment.

Here's what Labcorp has to say about that test (and the link I gave above is also from Labcorp):

Qualitative and semi-quantitative detection of antibodies to SARS-CoV-2 spike protein receptor binding domain (RBD). Aid in identifying individuals with an adaptive immune response to SARS-CoV-2, indicating recent or prior infection. At this time it is unknown how long antibodies persist following infection and if the presence of antibodies confers protective immunity.

Your doctor has an interpretation of this. There would be others. The test result is just data -- the interpretation is where the art of medicine comes in, and many of these parts are things disagreed upon, as I mentioned above. Before I had Covid, my antibodies were 0, the 'negative' reference range in your attachment. Now they are non-zero, but I see that as just evidence my immune system is working and I'm still carrying healthy antibodies. This is something to discuss with the doctor.

I don't see any harm in doing a despike protocol. There are a few out there, here's a recent one I ran across a few days ago. I don't have any issues with Dr. McCullough's work; others do. Again, it's all choices in the end, and nobody has all the answers.

Best wishes to you and your family.

 

[wabi-sabi]

We have been turned away by every doctor in mainstream western medicine and were basically told they have no treatment at all for him other than sleep meds and stimulants.

I had this for 9 years before I found my immunologist. I really thought I would die before I found him. And the most scary part: it was just luck and persistence to keep going to doctors over and over again. I've had so many bad experiences with doctors that I hate seeing a new one. They have been condescending, rude, dismissive. One was even rude to my mother! But the only things that have ever helped are real medication from a doctor who understands. It's just so devastatingly hard to find one.

I don't mean this to sound more discouraging, but hearing you say that doctors have tried to give your son sleep meds and stimulants tells me that you have only seen doc that don't understand ME/CFS, because these aren't really treatments for ME/CFS. They are treatments for fatigue, not ME/CFS. The vast majority of docs don't know the difference. But you know that already because they couldn't help your son. In this situation, the only thing I know how to do is educate ourselves from doctors who really know like Dr.
Bateman. Then you can measure the other docs you see against her.

I understand turning to alternative medicine when real doctors refuse to help. The problem is that alternative medicine has very little of value to offer us.

My son had 3 Covid shots in 2021 and got Covid in 2022.

That is what the results mean! When we get a vaccine, it teaches the body to make antibodies to a disease. When we get a disease, our bodies make more antibodies. The antibodies themselves are not a problem to be fixed. They are not (necessarily) indicative of an ongoing infection. And if your son does have an ongoing infection, no one knows how to cure this yet. But NIH is working on it as we speak, as is Stanford. There is a lot of discussion in the real medical community about how to test for this and how to treat it. Let that give you hope.

This makes me so angry on your behalf! This person is misrepresenting basic high school and college biology on production of antibodies to try to sell you a fake treatment. Even if he or she means well, this indicates a lack of understanding of high school biology, let alone medical school!

Here is a blurb from Bing when I looked up antibodies.
"Antibodies are proteins that can recognise and bind to specific parts of a virus, such as the spike protein of SARS-CoV-212. The spike protein is the part of the virus that enables it to enter human cells, and is the focus of most COVID-19 vaccines12. Antibodies that can prevent the spike protein from attaching to and entering human cells are called neutralising antibodies, and are important for protection from re-infection1. Some antibodies target the receptor-binding domain (RBD) of the spike protein, which is where the virus binds to human cells3."

What this means is that antibodies are what protects us from disease. Even of getting rid of antibodies were possible (and I don't know that it is) it would not be beneficial. What this test does not and cannot tell you if is your son has a lingering infection.

 

[wabi-sabi]

Before I had Covid, my antibodies were 0, the 'negative' reference range in your attachment. Now they are non-zero, but I see that as just evidence my immune system is working and I'm still carrying healthy antibodies.

Yes, exactly! They are not a problem to be solved or an indication that anything is wrong. They are just a marker that your son has had COVID and has also been vaccinated. It might even show that he has some resistance to COVID, but that's where you need a doc to interpret the result for you. You certainly don't want to do a protocol that might lower his resistance to COVID. And to beat on a dead horse, if the functional person is saying that he can get rids of the spike antigen, well that's straight up not true, because no one on the planet knows how to do that yet.

Think of it like this. For people who are very sick with acute COVID, sometimes doctors will give them convalescent plasma from people who have recovered from COVID. The plasma contains antibodies to COVID. These help your body fight off the infection. You don't want to get rid of them. They are beneficial. They are so beneficial that your body keeps them around afterwards to help fight off the infection should you catch it again. That is what your son's test result shows. HIs body is keeping the antibodies just in case he needs them again, because his body learned to make them both from the illness and the vaccine.

 

[wabi-sabi]

@Hope_eternal
Here is where you go for real treatment resources for both long COVID and ME/CFS. Dr. Bateman has worked for us for decades and she puts all this knowledge on her website for free. This is where you want to do your research. If you watch all her videos, you will know more about the illness than most doctors. I can't remember her ever talking about spike antibodies, but if anyone has anything useful to say on it, it's Dr. B. If she doesn't talk about it as useful, that's your answer.

https://batemanhornecenter.org/education/long-covid/

 

[wabi-sabi]

And here is one of the places you can keep up with current research on Long COVID. I went to the webinar yesterday where they talked about ongoing infections vs reinfections. They don't have yesterday's session posted yet, but you can watch the others. This is another place, where if you watch all the videos you will know more about the illness than most doctors. If there is a doctor you like the sound of (or who is in your state) in any of the videos, you might try writing to them for advice. It's a long shot, but if you've used up the resources in your area, it might be worth it.

https://recovercovid.org/

And here is their youtube channel:
https://www.youtube.com/channel/UC9k05vWtot1DGT4LiT257HA

I think this video would be most relevant to viral persistence:

 

[Hope_eternal]

CFS and long COVID are very similar in nature, as far as I know. Treatments, that target spike protein have helped me great deal (ivermectin and bromelain+NAC). I'm still very sick because I wasn't able to tolerate these treatments long term. IMO, trying this despike protocol is worth a shot.
I'm not a doctor, so take everything I say with a grain of salt, obviously.

Thank you so much for your reply. I’m sorry you weren’t able to tolerate the treatments for very long. Just fyi the doctor we are seeing now said ivermectin would cause my son to herx and he didn’t recommend it at his level of fatigue/illness. He istarted him on immune boosters for a month then we will try further treatment. We have tried the immune boosters yet. I’m going to give my son a rest for a few weeks. I hope you find something that helps you improve and gain more strength.

 

[Hope_eternal]

And here is one of the places you can keep up with current research on Long COVID. I went to the webinar yesterday where they talked about ongoing infections vs reinfections. They don't have yesterday's session posted yet, but you can watch the others. This is another place, where if you watch all the videos you will know more about the illness than most doctors. If there is a doctor you like the sound of (or who is in your state) in any of the videos, you might try writing to them for advice. It's a long shot, but if you've used up the resources in your area, it might be worth it.

https://recovercovid.org/

And here is their youtube channel:
https://www.youtube.com/channel/UC9k05vWtot1DGT4LiT257HA

I think this video would be most relevant to viral persistence:

Thank you for sending these! I will take the time to listen to the videos as time permits. This is very helpful. I really appreciate it.

 

[BrightCandle]

In regards to Long Covid its a broad term that covers any lasting symptoms 12 weeks after the acute infection of Covid. About 50% of Long Covid sufferers meet the clinical definition of ME/CFS, via the Canadian or international definition. The total list of symptoms for that ME/CFS subset of Long Covid is identical to the long list for ME/CFS from other causes, but with slightly different prevalences. There is quite a lot of blood and other testing showing they are at our current understanding the same condition.

The other 50% of Long Covid cases are other things. Some people loose taste and smell, some gain diabetes others heart or liver disease. Covid attacks every aspect of the body so it can damage just about anything and we looking at a 50% increase in heart attacks and strokes alongside other vascular related diseases like POTS.

Hopefully that clears up the term Long Covid and its relationship to ME/CFS. Nowadays I would say someone has Long Covid subtype ME/CFS to be specific. However most researchers and doctors when talking about Long Covid are talking about the ME/CFS subset only, because all the other outcomes are known, named and often have treatments and they don't really know the true underlying causes of those anyway (based on what Covid did its probably viral damage!).

There is one other term out there which is PASC. This is usually related to people who were hospitalised with Covid and they have a similar condition but also a lot of them have a condition known about for a while after being on a ventilator. This often in studies gets called Long Covid but its not the same condition as a patient who had mild Covid and then went on to develop lasting symptoms. You have to watch out for this in any study because especially out of the UK this is what they have twisted Long Covid to become and this condition is at least in part de-conditioning and responds to physiotherapy.

Edit - and I just read a paper out of Africa that called mild acute Long Covid patients PASC. The terminology is all messed up! I have added no light to the situation whatsoever today!

So its a bit confusing because patients did their thing and then research did theirs and medicine did something different and then all the research found out a tonne of stuff and we have a advocacy marketing name and a disease and its all mixed together with some profit seeking misbehaviour.

doctor we are seeing now said ivermectin would cause my son to herx

Its possible but I think its unlikely to do anything of note at all unless parasites are present. Its an extremely well tolerated drug although ME patients often don't tolerate any drugs well. It doesn't do anything for Long Covid after a few studies looked into it so I would only bother if you think parasites are present, that should be testable from the stools and maybe in the blood or present on a scan (such as a tape worm or similar).

 

[Wayne]

Everyone is working on how to treat long COVID and no one quite knows yet.

Thomas Levy (M.D.) figured out how to not only resolve his own long COVID, but how to improve his health in the process.

Dr. Thomas Levy -- How COVID Helped Me Regain Good Health​

For anyone interested in a detailed long COVID recovery program, go to the FLCCC's website.

I-RECOVER: Long COVID Treatment

 

[wabi-sabi]

ivermectin

Ivermectin is a neurotoxin. We used it on our horses for deworming when we little and were told never to touch it because it was so dangerous. I have no idea why anyone thinks it would be good for long COVID or acute COVID. Right up there with injecting bleach into yourself.

Sorry about being so salty. I am dealing with my demented mother again and it is beyond frustrating.

 

[Hope_eternal]

Hi @wabi-sabi I’m sorry you are going through a tough time with your mother’s dementia, especially while feeling unwell with ME. That’s a really difficult place to be. I hope you are able to find some peace and a quiet space for yourself throughout the day to get some reprieve from the situation.

Ivermectin is used in humans as well. There is a form meant for humans and a form for animals, I understand that your trust is with mainstream medical professionals. I’m kindof in the middle. We have been seriously let down by mainstream and have been left to basically figure out how to navigate this illness on our own. I do think there are many avenues to healing. Some find it in western medicine and some find it outside of it.

I’m actually feeling pretty bad right now which is why I haven’t been responding lately. The sadness and grief I feel are intense and I’m coming to terms that this may possibly be a lifelong battle. I’m terrified for him. What happens to him when I’m no longer here. I don’t want him to be without me. I have been his only advocate and I don’t want someone else who has no attachment to him, no love for him to be caring for him. I love him the most. I have his best interest at heart. No one knows him like me. It’s incredibly agonizing to know one day he’ll be reliant on someone who doesn’t love him like I do. It’s also incredibly sad. I’m furious and deeply upset that our SS denied him assistance based on bullshit excuses..My son is all alone in the world without me, my husband and his sister. A terrifying reality.

I’m sure you mean to be helpful but there are times I feel judged. I don’t want to come here and feel judged for therapies I may be considering. Trust me. I’m VERY cautious and research everything before I give it a go. I turn myself inside out trying to figure out everything I can. I’m careful and use a tremendous amount of caution and am skeptical when considering any and all treatments. I’m sorry I’m just really really tired, hurt and painfully upset. I hate this for him. I hate this for everyone that is having to deal with this illness. I hate that there’s no treatment and that all these years the illness had been ignored and dismissed. My heart hurts so bad