I'm pretty depressed at the result I received from Quest Labs just before I left for a two week trip to the California Coast to celebrate my wife's 60th. I didnt let the test result stop me from travelling, and I refuse to live in a Bubble, but it does depress me.
I'm copying the result below, so the more knowledgeable of our group can tell me if it means I have zero immune system. I had both Moderna shots and this test came about three months after the second shot.
Carl
SARS COV 2 AB (IGG) SPIKE, SEMI QN
COVID-19 Antibody Test Result - Negative
Your test result was less than 1.0, meaning antibodies were not detected in your blood sample.
This could suggest the following:
You have not recently been infected with COVID-19
Your antibody levels may have declined over time and are no longer measurable after prior COVID-19 infection or vaccination
You have not yet developed antibodies after recent COVID-19 infection or vaccination
Antibodies can take up to 2 to 3 weeks (sometimes longer) to develop after someone is infected or a final vaccine dose is administered
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wizzard166
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Wizard - Sorry to see your antibodies result but ... there is reason not to be depressed. Many previous posts on this website on results like yours and others results (type in “antibodies” in the search engine n you’ll get dozens of posts to read, if interested).
What’s in those posts often are the LLS antibodies study test results “disclaimer” quoted that basically says “they” the expert researchers, don’t know what level of protection from covid one may have based on any score
(Be it 0 to a max score).
Plus there are T-cells (not tested in your case I believe) that may offer you another warrior against covid.
Now with all that said, most people are getting advice to continue to “be safe” don’t let your guard down, etc. n continue to protect yourself wisely.
Sorry can’t provide an analysis on your particular score, but nor css the experts! But hope that it provides you with some sense of calm that it’s not “over” for you. Lots to still research on antibodies/protection topic.
I had a pretty bad case of covid last November. I have colitis and it messed up my stomach. My lungs also showed some viral pneumonia. Luckily it was not my time to go. I have CLL but am on W&W. I had myQuarterly blood test a couple of weeks ago and asked to be tested for anti bodies. Medicare covers testing. IGg and. Igm came out positive. I will continue to be tested with each blood test. Iwill ask my oncologist if they do the T cell based covid test next time.
Your immune system is composed of three major “systems” that can work independently of each other or work in concert. That one of them might not work well as you want does not lessen the other two. As part of the early research, all three systems are triggered and can act independently. We do not routinely test the other systems.
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This blood test looked at the number of antibodies formed by a specific date. Is it possible that people with altered immune systems take longer to make antibodies? That would require taking too many blood tests over a longer period of time and so that is not done outside of research studies/clinical trials.
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Is it possible that your immunization triggered more memory cells than active antibody producing cells? We do not test for this.
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Reporting of SARS-CoV2 post vaccination does show that, while subsequent infection is possible, there have been no reported deaths and no reports of serious disease. Is that true for the immunocompromised? We do not know.
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This virus is approximately 2 years old. Never in the history of science have we learned so much about a virus, a disease, and or prevention in so short of time. Do we have all of the answers? I suspect we do not yet know all the questions so, no, we do not. Perhaps what we all need to do is to concentrate on living each day to the best of our ability. Susan Leclair
I don't let it bother me. What for. I just go about enjoying life and myself, and later on I might read what they found out. I've just gone about wearing a mask when necessary, keeping some distance, using hand sanitizer, and so on. Mainly though I have just gone about doing things they warned us not to do, like travelling in the midst of the Pandemic, and doing four days in four parks at Disneyworld, and eating indoors in restaurants, etc. Somehow the mix of these contradictions has led to me not going crazy and still being alive. Sounds good to me.
My own view is that it's quite useful to have an up-to-date list of what we do know already, and what we have yet to find out... of course, you are free to disagree about that. I always liked that comment by Donald Rumsfeld that: "There are known knowns; there are things we know we know.We also know there are known unknowns; that is to say we know there are some things we do not know.
But there are also unknown unknowns — there are things we do not know we don’t know."
Can't agree with you there - uncertainty is a part of life, and for me, having that nuanced perspective is important for conducting my own risk assessment regarding COVID.
Dr. Susan LeClair is amazing, and has supported CLL patients, explaining the lab side of things, for years. “We don’t know” is a very important message! Everyone is trying to be tested, and to interpret test results, based on incomplete information about how the vaccine results should be interpreted. Personally, I have no interest in being tested or obsessing about what the test results mean. When someone with Susan’s knowledge reports that there is a test that gives reliable information I’ll reconsider. I prefer the truth - “We don’t know” - to basing my actions on test results that may have no significance!
I appreciate Dr Leclair 's post. Someone with great expertise on her own time helping us understand these tests, and that at this time we don't need to spend time or money pursuing them. That is USEFUL info. Note that lankisterguy said that her post was very helpful. As an MD with CLL myself, I agree. Doctors who make statements with bold certainty ( instead of truthful 'we don't know') have said we needed various treatments (hydroxychloriquin, etc) that didn't pan out. And just because a test is available doesn't mean it's necessary or even appropriate in most cases.
Wanted you to know I appreciate all of your input, and find you to be one of the truly knowledgeable members on this site. Thank you.
Are you living in, or from, Lancaster PA? I learned during my years not too far from Lancaster, that the local pronunciation would be Lankister (with the heavy emphasis on the first e. Just like Lebanon is pronounced Lebnon, with the heavy emphasis on the first e. I lived with my wife and kids in Harrisburg PA for ten years from '78 to '88, where I built a Nursing Service from scratch. Sold it in '88 and moved everyone to sunny South Florida where I've lived since '88. Used to love to visit Lancaster Amish country and also Hershey each year. It was the only place I've ever lived where people could pronounce my last name, especially since the vans of the largest exterminator company (with our name) were all over the region daily back then. Unfortunately my family didn't own that company.
I was born in Lancaster County (Mountville) and my parents moved into Lancaster city when I was in 3rd grade, I graduated from HS 1965 and worked my college work co-op in New Holland. I worked in Lancaster from 1970 to 1977. My mother (95 years old) still lives in the same house in Lancaster along with many cousins in the county. So you are correct, Lankister is the way all the locals say it and they are incensed when someone says "Land Caster"- those cites are in Ohio and California.-
On the nose Len. I'm actually a distant relative of the doctor who one the first Nobel Prize in Medicine. His award was ironically for discovering the our body's second immune system (the auto immune one), which came after his discovery that cured Syphilis (The Magic Bullet). My Father's Father was apparently a Cousin and came from the same town in what now is part of Poland. I'm one of the only Males in our family who didnt become a doctor, so I guess I'm sort of the Black Sheep. I'm positive its because I was severe ADD, which when I was a kid they didnt even have knowledge of. My Brother Matt was accepted to Medical School from High School, and is super brilliant. Oh well, I always loved Biology and did teach it in HS for a brief period of time. Then I went on to Hospital Admin in NY and Buffalo, then to starting and building a private duty Nursing business in Harrisburg, and finally now in my late years in South Florida I'm a Medicare insurance agent. I'm 74, but I won't stop working.
Hi Wizzard,I also am on watch and wait and unmutated. To protect myself from covid. I bought the antigen self test. It takes 15 minutes at home to find out if your covid positive. If I get any cold or flu symptoms I will take the test immediatly. If I test positive, I will go directly to my local emergency room to be infused with monoclonal antibody cocktail. I have already talked with the hospital in advance to make sure they are an infusion center for the cocktail. I also confirmed with the Emergency Dept head nurse. She is the one who told me I dont have to pretest, just come in and they will test me and infuse while laying on a bed right while I am there.
I bought the self test so I can self test so as to not waste time. Also my local emergency that infuses antibodies is about a 30 to 40 minute drive each way. So the at home is a great way to avoid false alarm hassle.
I highly recommend keeping one of these tests in your baggage when traveling. Also make sure you call ahead to find out what hospital can infuse you in advance.
NO ONE DIES IF THEY GET CLONAL ANTIBODY COCKTAIL INFUSED AT THE ONSET OF COVID SYMPTOMS!.
COMBAT COVID IS A GOVERNEMNT WEBSITE WHERE YOU CAN FIND OUT WHAT HOSPITAL NEAR YOU HAVE THE ANYIBODIES. THEY ALSO HAVE AN 800 NUMBER ON THE WEBSITE SO YOU CAN TALK TO THEM 24/7.
IF YOU WALK IN TO A HOSPTAL EMERGENCY ROOM AT A KNOWN HOSPITAL THAT CARRYS THE ANTIBODIES. YOU NEED NO APPROVALS. THE EMERGENCY ROOM HANDLES IT ALL. YOU ARE PREQUALIFIED TO RECIEVE THEM AS YOU ARE OVER 65 AMD HAVE CANCER.
Thank you for the heads up on the monoclonal antibodies and their availability to patients like us.
I assumed Pacific View meant you lived along the California Coastline, which my Wife and I just drove this past week, but I see you go to Duke for your CLL Specialist; so, I assume you now live in NC. I really loved the view and drive from San Diego to San Fran, it is truly spectacular. I also truly like the part of NC where Duke is, and I respect Duke Medical Center a lot.
Hi Carl....You are spot on, born in California.Now in NC and I spent a lot of time in the Pacific Ocean.
I have been trying to get the word out to fellow CLL'rs here about antibody option for us. There has been much concern espressed here about vaccine protection. We have immune system cancer, so its been a pretty normal question in ones mind. It was for me, and thats why I made sure I had a quick plan B. There are a few different ways of accessing the mono clonal antibody cocktail here in the USA. The way I described is the fastest. The effectiveness of the clonal antibody cocktail treatment depends on getting it infused a.s.a.p after onset of symptoms. 10 days after onset of symptoms, the antibodies wont help.
I dont want to be calling this Doc or that one waiting for approvals and procedures. Maybe they dont get my message quickly? Maybe they are out of town? Maybe a testing place is closed etc. I am not going to wait by my phone if I have covid brewing in my body. We know how easy it is to get lost in the shuffle. So I wanted a fool proof and quick way of access to the infusion.
Thank you for the info. It looks like my local hospital has the antibody treatments. The VA hospital in Washington, D.C. is not listed, but I intend to call them first thing tomorrow morning to question them as to the availability of the antibody treatment at the VA and, if not, why not?
I read the information derived from the link you sent, and although it won't alleviate the sadness I'm feeling; at least, I'm more knowledgeable. In essence I'm as at risk as I was before the vaccine, which I'll assume is totally at risk and more so than normal people.
What I have been thinking is very weird, is that I have not lived in the proverbial bubble. I've gone on many trips of both the two week to three day weekend variety, stayed in dozens of hotels, gone to hotel bars, eaten in restaurants both indoors and outdoors, and even did four days at Disneyworld in Orlando. I've never worn a mask outdoors, except when I go to Boston for my six month visit at Dana Farber, and only then because apparently it is mandated even in the streets. I open doors without gloves, and fill car tanks at gas stations without gloves. I have worn masks walking into restaurants, but then wisk them off as soon as we are seated. I've now recently done two trips by airplane.
The totally weird thing is that I have zero immunity according to the Vaccine antibody test (granted they "don't know what that means yet fully", but frankly it means no immunity except for the other two systems we have (and us CLL patients are severely weak with those also). So what gives with me? Don't me wrong, I'm thrilled I'm not dead yet, but shouldn't i have been exposed hundreds of times already without even a sniffle? I'm beginning to think that some people, including us, must have a natural immunity to this specific virus. Maybe it simply can't grow in me, and others like me.
A woman who works with one of the insurance companies I represent recently said something to me that relates to this. She was confused because she ended up in the hospital with Covid, had a bad time, and had been sick for a number of days before hospitalization. She said she is really physically fit, eats very healthy stuff, runs, jumps, and I get tired just listening to her describe what she does. She said her husband is overweight, doesnt work out, eats poorly, and took care of her face to face for the days before her hospital stay. He never even got a sniffle. Interesting isnt it? I might be right. There might be segments of society who simply have some form of natural immunity to this thing.
I'm not suggesting I or anyone else reading this should reduce our basic steps to prevent getting infected; however, it is nice to dream that maybe I and others like us are somehow immune without a vaccine.
C’mon Neil. Can you even think of any technology available today that can reliably be used to answer that question? I certainly can’t.
All these really weak studies, some published - But all they can do is say who with CLL should worry more than another. The bottom line is that none of us can be sure.
Wih Mab’s out there proven to manage COVID, no immune-compromised patient needs to worry. It’s easy to get COVID, much much harder to get am Mab infusion.
It's not that we don't have the technology, it's just that we lack a time machine to compress the time taken to correlate the measurements being taken with the outcomes when vaccinated CLLers become ill with a COVID-19 infection. With many of us maintaining precautions, hopefully it will be some time until we get that data for analysis. In case you haven't noticed, our immune systems are extremely complicated. There's lot still to be discovered, particularly when we have CLL, with all the complexity that adds; markers. treatment history, time since diagnosis, last coronavirus exposures ond so on.
That’s the point. We don’t have that technology. A “rare” disease and few that are out to help us. But, Mab’s could buy us a year at a time. A new one was recently introduced in the US (AstraZeneca). There are others.
Same scenario for my brother and sister in law in Va. He became nearly fatally ill with Covid in January. Was home sick for 9 days before entering an ICU. His wife took care of him but never contracted it.
I'd say it seems obvious that many people are walking around out there not endangered whether vaccinated or not, and others will get this bug and maybe seriously ill unless vaccinated. I wish I knew for sure that my indiscretions are an indication I'm one of those who the bug can't get; however, I really have no way of knowing. I refuse to stay in the bubble, but I'll try not to be too crazy either.
There is so much we still don't know about Covid. We DO know that the vast majority of deaths have been in populations with underlying health conditions. That much is clear. But many seemingly healthy people have suffered greatly too.
I think it's important to keep in mind that asymptomatic people may be unknowingly/unwittingly infecting and and killing others. Wearing a mask helps protect others, not just ourselves.
I completely understand where you're coming from. I haven't taken the same types of risks as you, but I did travel after my first shot (on a plane, even) and carefully gathered with friends indoors this winter (with pre-isolation and antigen testing, which was thankfully available here for free or cheap). After my second shot, I intend to mostly-fully-integrate back into society, with some precautions (after all, I enjoyed not even having a cold this year!)
That said, I am also fairly certain that I had COVID in February 2020. I had all the symptoms, but there was no testing available here yet. I had been on several airplanes and had almost definitely come into contact with the virus in some of the places I traveled.
Maybe I've given the impression that I've taken no precautions, but that isnt the case. I simply have refused to stop everything we used to do; except for the first four months from Feb 2020 to May 2020 when I basically did nothing but say inside or walk outside. Even then though I have always walked outside in my development without a mask, but side stepped others who were walking my way (as did they).
Even during that period I did travel to Boston for my six month visits at Dana Farber, but I did it by car instead of plane. I stayed in Hotels, but kept to major names like Hilton (now I've reached Gold status). I didnt go to the hotel bar and sit next to people and chat, but we did eat inside the restaurants with a few tables in between each customer. My last trip there in first week April I finally took the airplane, and each trip there I always add at least a week of a side trip somewhere else in Massachusetts and this last trip Maine. The trip to Disney was this past March, after I researched their recent history. They apparently had no break outs due to any visitors since their opening, and they were mandating reservations each day to any park (even when you already have an annual pass which we do) They stuck to the rules about limiting entrance, such that we were actually able to park within walking distance of the front gate; normally, parking is multiple lots further back with a need for a shuttle to get to the gate. So Disney really has done the right thing, and inside the parks they are fully mandating masks and distance between people.
In essence I have not done crazy things, such as the body to body mass gatherings we saw during some of the pre election rallies. I just continue to travel and stay at hotels and eat out including indoor dining, while agreeing to use masks and distancing. Most others were afraid to go out, nevermind travel, so I feel I've been a risk taker. Now I'm flying again, and that too is of course an added risk. My recent trip to Vegas of course was even more of a risk, than the trips to Cape Code and Maine and St Augustine and Orlando. Vegas was a big step out there, but apparently once again I've come back unscathed. Maybe I really am one of those who simply will not get this bug.
No no, not at all! I should have been clearer - that you took more risks than I did, based on my own standards. It sounds as though you thoroughly researched your choices and understood your risk!
My understanding is that indoor transmission poses the highest risk, so I wouldn't have eaten indoors, for instance. I did, however, attend a protest last summer, because we know that outdoor transmission is very unlikely (the latest number I saw is that fewer than 300 cases globally have been proven to have occurred through outdoor transmission).
I'm not sensitive to input on my actions, so I wasnt thinking anything about your input. I researched the Disney trip, and had to rely on the data provided by a newspaper; however, since that newspaper was the NY Times I felt comfortable with the info. Then when I visited Disney I was really impressed with their preparation and enforcement.
I guess eating indoors wasnt too smart, but I just wanted to do it. So far so good. I haven't gone back to LA Fitness since the start of things in February 2020, and we stopped our every weekend early evening movie on Saturdays followed by dinner out. I miss the movies and the dinner that followed, but I don't really miss LA Fitness because I failed to keep up with that type of exercise in my later years. The gym has therefore been something I had to force myself to keep doing three times a week. I did finally re start walking each morning, which I had stopped for eight months, and have kept it to only one mile. I seem to get exhausted just doing that mile, and I'm purposely keeping it to a slow pace (about 20 minutes). At least I'm doing that, and I've already seen a benefit from it.
I really believe there is something in my blood, or body tissues, that has kept this Covid thing at bay. How else is someone like me with very low IgG IgA, and IgM readings doing all the things I've done, and not come down with this thing? One of the other posters said my situation has been dumb luck. I can't believe the extent of my luck is that incredible, but who knows. Whatever it is I'm just thrilled I havent gotten it and have been able to travel and enjoy life.
Carl, a negative test for you doesn't mean "zero immunity". It means "no detectable levels of the specific antibody tested for". Which in this case, is post INFECTION antibodies. We don't know yet if the antibodies in these tests that were developed for POST INFECTION patients will correlate to POST VACCINATION antibodies. And if they do, what levels correspond to decent protection. Also, none of these tests take into account T-cells, macrophages, and other cells and systems that contribute to immune responses.
The fact that you have not expressed you get recurrent infections means your immune system is somewhat functional. People who don't have a certain level of basic immunity get opportunistic as well as pathogenic infections on a regular basis. This is true for any disease or therapy that affects immune function, not just CLL. Some people here need IVIG, and/or prophylactic medication. These people are at the "highest risk". For example, I have had a lot of HIV patients in the past who got constant infections and needed constant prophylactic measures. I also had a number of HIV patients who didn't have these problems. While their T cell levels generally correlated with infections, it wasn't a guarantee. Same thing for us with CLL. Some of us deal with more infections, some don't. It's highly individual. Same thing with Covid. But since Covid is so unknown/unpredictable as to who it affects, and to what extent, our personal choice is to err on the side of caution. IMO this is a highly individual choice.
I agree that those whose bodies are able to respond at least somewhat to coronaviruses in general are likely the ones who are not getting overt infections. But we have no way of knowing/predicting who these people are, at this point in time. So it behooves many of us to be as cautious as we are during flu season, or other community infection outbreak.
You are clearly very knowledgeable, and likely either a physician or nurse practitioner, so I would truly love your input on my fantasy I've expressed in this now popular post.
I've said a number of times in this post that I'm wondering if some people simply have a natural immunity to this specific covid type of virus. I'm thinking it isnt because they have antibodies for this specific bug, but more because something else in their body physiological makeup kills this bug upon contact. I can't explain it better than that in biological language. The fact is that my vaccination didnt work, my three Immune test numbers IgA, IgM, and IgG are a good bit now below the so called Low Normal numbers, and I historically have a bad immune system with multiple respiratory illnesses throughout life. Yet here I am running around like an idiot to places like Disneyworld, and now Las Vegas, and eating indoor in restaurants. And I've done this throughout the pandemic. How is it possible that I didnt get infected and die yet? Is it possible that my luck is beyond belief and I've never been in contact with the bug, or is it something else.
So it's possible that people exposed to various coronaviruses in the past may have developed antibodies, T-cells, or other immune responses to these. Whether or not immunity/response to a previous coronavirus, as well as the nature and extent of a person's immune response to any pathogenic challenge, will determine if, how, and to what extent, a particular person will respond to a new pathogen. The immune system is complex and there are many factors that can help as well as hinder an immune response.
I am not sure what you mean by "natural immunity", other than some people may have a more robust response to coronaviruses in general. "Natural immunity" in this context generally refers to people who have been exposed to a bacterial or viral agent in a low quantity that elicits an immune response, with few/mild symptoms. But the response from "natural immunity" mechanisms is variable and generally not as predictable as immune response from vaccination.
Thank you again Sofia for trying to help me understand what appears to be contrary to all logic. By this I mean I haven't followed all the rules the way many have done, although I haven't abused them either. So I've been somewhat cautious by wearing masks when mandated and also staying away from crowds (until this last trip to Vegas and also using the airlines). But for someone like me with such low IgG and the other two immune test numbers, it is too hard to imagine I walked around Disney for four full days, now went to Vegas, am flying and in airports, and have eaten in restaurants and stayed at hotels throughout the entire time of the Pandemic. I've done this since February 2020 when the whole thing started, and I decided to go to Boston for my first visit at Dana Farber.
It is making me struggle to understand how someone who has such a low immune system numbers like me, and who has done all these supposedly dangerous things, has never even sneezed. One other guy posted that I am stupid with my question about natural immunity and i simply have dumb luck. As someone who used to place a bet or two, I know what luck is. Frankly I'd say that the amount of incredible luck I seemed to have had with this bug is too much to ignore. In other words its too much luck and I'm not knowledgeable enough to even hypothesize what is going on. But I feel that something in my physiology has protected me from this bug, and it can't be a huge huge amount of luck.
You made reference to people who have had many bouts with normal colds, and perhaps them having an immune system response that is preventing this particular Covid from being very dangerous to them. I have a lifelong history with huge numbers of respiratory infections. I've had Pneumonia four times in my adult years, and as a kid I seem to remember Bronchitis every year. The Covid bug is predominantly a respiratory one, so maybe that is why it hasn't put me down. I have this feeling that there is something else in my blood and lymph system that others also have, who have taken care face to face of relatives or patients and never come down with it. Maybe the medical geniuses out there should put together a blood analysis study of those who never came down with it but who were frequently face to face with it. We might find something in addition to the Monoclonal Antibody Infusions that could put this particular Covid to bed.
There is research being done on T-cell response and function for this particular coronavirus. The big problem IMO is that these things take time as well as data to draw correct conclusions. Since many aspects of handling this pandemic were done at relatively rapid speed compared to earlier medical research, many people think ALL aspects of resolving/minimizing this pandemic will also be at rapid speeds. Unfortunately that isn't the case. We have been able to learn certain things rapidly, but not everything we would like to know.
IMO the fact you have had numerous respiratory illnesses in the past makes it likely you have been exposed to a number of things, and most likely have a few T-cells and antibodies that could be offering a modicum of protection against Covid-19. Have you been tested for antigens to Covid, are you certain you could not possibly have had a mild or asymptomatic case? Also, just because you have done a number of "wrong" things with regard to catching Covid, does not mean you should have gotten it. That's kind of the basis behind people saying we needs lots of numbers of things to be able to predict trends and percentages. Because saying "this happens X percent of the time" means "100-X" percent of the time whatever we are measuring doesn't happen. You happen to be one of the "100-X" people who didn't have the event happen. In this case that's a good thing. Some combination of "100-X" plus whatever immunity you have, likely contributed to this. In layperson language, Murphy's Law at a minimum says 1) there will be immune compromised/regular people who don't get Covid even when exposed and 2) there will be people who do not get Covid even if doing behavior that typically results in exposure.
Statistics in healthcare aren't really "logic" based events. "Infection rates" are not physical laws like gravity, they are probabilities. And even if a probability approaches 100%, by definition, that means there are those who won't experience that event. So there are people like you, who haven't gotten ill. There are also people who can't figure out how they got exposed to Covid & got sick. It's not "logical", but medicine often isn't.
So if I'm understanding you correctly, I'm one of the large data base who was exposed and simply didnt get infected; at least, not to a degree that it was evident. I fit into the group in a large bank of data that for whatever reason didnt get infected, and there will always be a certain number identical to me who will be part of that larger group.
While true that a significant number of people will be exposed and not get infected, including those who are immune compromised and those who are not, that simply fits exactly with what I am saying. I've spoken with others who were severely ill with Covid who had family members around them regularly who did not get ill. I'm sure some of those family members are healthy people with good immune systems and some are either immune compromised or have one of the factors that imply higher risk (like being overweight, or a diabetic, etc). The real question I'm pondering is why these uninfected people like me and others exist. It is nearly impossible with the things I've done that I have not been reasonably close to someone carrying the live virus; yet, despite the compromise immune system I have gone without infection.
The only two possibilities the way I see it is that my luck was incredible and never actually came near anyone who was a carrier; or, something in my blood or cell membrane material is preventing the Covid virus from entering my cells (or it enters and is immediately killed). Don't know enough to come up with a great scientific answer, but there are obviously a large amount of people running around who were exposed and go without a serious illness. Then there are the young people with great immune systems who have died from Covid, and autopsies have showed a large amount of very small blood clots in their heart and other organs.
I know I'm overthinking this, and should just be hysterically happy I haven't ended up in a hospital. One of my problems is once my mind picks up on something with a group of unknowns, it just won't stop working on trying to solve it. I don't think this is the first and only battle with new Covid and other viruses that will be coming down upon us. I have a feeling that studying those who were exposed and didnt come down with a serious illness could lead to something vitally important. Some common thread that might be found in the blood analysis or cell chemistry, that could lead to protection in the coming battles.
Hi Wizzard,My husband recently received the antibody test and his CLL specialist told him that they still are not sure how to interpret the data so continue to take precautions.
Not very straightforward but I expect it will be more understandable soon.
There is so much unknown with this vaccine and it’s efficacy especially for us ... There are so many additional viruses and other stuff around that can impact us more than those without Cll but we have to strike some kind of balance and live our lives as well....What we should not do is judge each person’s personal choice ....
Hope you enjoyed your wife’s Birthday celebration and continue to enjoy !
I agree with you. I just posted a reply to Neil, one or two paragraphs above your reply, in which I explain how "bad" I've been with respect to taking risks. My wife used to yell at me a good bit, and finally she is quieting down about this. I'm also beginning to believe that some of us actually have a natural immunity to this one bug, because what I've done is somewhat crazy; yet, I've never even gotten a sniffle. Either I have the greatest luck any human has ever had, including some of the greatest wins in a casino, or something is up with why I'm still walking, talking, and chewing gum. I'm still going to be a little careful, and I do agree most of us should be careful even with the vaccine, but I'm going to continue enjoying life for what little of it I have left.
I did take some precautions like wearing masks when I was mandated to do so, and not mixing in crowds, but the amount of doing things that the experts constantly warned us not to do like travel and eating inside in restaurants I ignored. How can I be that lucky? I suppose extreme luck can happen, but wow that would seem to be like a 50-1 winning the Kentucky Derby
Maybe so, but with all of the indiscretions I was involved in that is a probability level for just luck of one in some huge larger number. I suppose that could happen, but honestly I think there is something in my body that has helped prevent the covid virus from entering my cells. Take the four days wandering around Disney Theme Parks and add it to the four days and nights of being in a Las Vegas Casino that was packed and no masks, attendance at two fully packed entertainment shows in Vegas including David Copperfield and Jabberwocky, neverminded all the hotels and inside restaurants on the other eight to ten trips in the last year, and if luck was involved it has to be one of the greatest luck events in recent history.
Yeah, maybe so. Let me tell you dying of an infectious disease is a real suffering. Be careful, you could come across a strain of the virus that is more powerful than you. Take Care.
I know I sound like I'm being stupid, but I am still taking all the precautions despite going to hotels and other places. I'm wearing mask, distancing as best as possible, and using hand sanitizer.
I love life and don't want to leave this place, so I'm going to believe I can still get infected and act as sensibly as I can stand to do.
Carl
I have had the same result, scoring at <40. What is infuriating to me is now were told "oh don't worry, there really no test for reliably determining protection ". Excuse me, then what in hell is this LLS adventure for? Just a covert grab of data? This is smelling like a ruse and not a rose and I'm Fing passed off about it!
I'm not pissed at the zero result for me, just a little sad about it. Still if we believe the results they are reporting the vaccine has had a phenomenal result for most of society. Listen if the rest of the people get protected by this vaccine, and we can then walk among them, then its good for us too.
Overall I'm just continuing to live my life to enjoy it, and have taken risks others would sneer at. Still I'm here and never even got a little sick. Maybe next week I'm gone, but I'll have gone down fighting; fighting to enjoy life.
I do recommend very few people try to imitate me; although, it appears that now it is pretty safe to do so.
Carl,Glad you enjoyed your California trip along the coast. I get a bit car sick so I prefer to be the driver. 😎 I have a daughter in Southern California and one living in San Francisco so I love that drive. So many breathtaking reasons to pause. Hope your wife had a memorable birthday.
As one of my favorite old singers Wilson Pickett sang in Mustang Sally, Ride Sally Ride.
I loved the ride, and I too don't like to be driven. I have to admit there was a very long section of the ride up and down a mountain with hair pin turns, some of them at 10 mph and the majority at 20 to 25, that did scare the ........ out of me. When I was finished with that section I was a good bit relieved; although, I also got excited and loved the drama as I sped around some of the turns imagining I was a professional race driver. The views are as incredible as any I've seen, and I've travelled a bit.
In addition to that breathtaking mountain ride alongside the Coastline, which I think was somewhere not too far South of Big Sur and of course free, I paid to do another scenic one they call the 17 Mile Scenic Drive. It goes through the private community of Pebble Beach just South of Carmel By The Sea. It too was really beautiful, and we stopped to take pictures down by the Ocean at one of those Vista Points.
The other incredibly beautiful day was when we stayed in San Francisco. I bought a pass to enter Muir Woods National Monument. There was also a nerve wracking drive getting to the entrance to that Park, but not nearly as scary as the other mountain. The Park is so beautiful with the Redwood Forests. I was very proud of myself managing to make the walk through the first Loop you can walk close to the entrance. I think it is a total of two and a half miles out and back, but you also go up and down a bit. I've only just recently starting walking one mile a day in the Morning, before we left to go on this trip, and I get very winded and tired too easily these days. So making it through that beautiful 2.5 miles up and down (granted with using one of the benches here and there) made me really happy. Interesting thing too about being in that park, amongst some of the largest and oldest living things on planet earth (the Redwoods), is that I felt a sort of peaceful energy that entered my body while in that park. Maybe the oxygen level is higher.
You do have good taste in music.😂One of my favorite artists and great music. Yes one of the perks to living in California is the diversity of the countryside. From where I live I can be in San Francisco within two hours or the mountains and Lake Tahoe in even less time. I understand the peaceful energy from the great outdoors. The giant redwoods are jaw dropping beautiful. I also love Carmel because it is dog friendly. Time to start planning your next trip. Stay safe and healthy. Sally
Wilson Pickett also had a great one The Midnight Hour. One of my big favorites of that same time and style was Percy Sledge. That man could really belt it out. My favorite of his was When A Man Loves A Woman. Great great song, and Percy just gave it all he had.
When I was a teen, and starting to look at girls, Percy was belting out that song in such a powerful way. I loved his song When A Man Loves A Woman. I was 19.
I was a freshman in high school when Percy came out with that song. I remember thinking there is no way a woman could have that kind of control over a man. Oh boy was I wrong.😂
I'm one of those males who just loves women; always have. Songs like Percy's and in particular my favorite Unchained Melody by the Righteous Brothers, set the stage for me to become the ultimate romantic. In my later years I dated a woman who was a die hard Country fan, so I had to start listening to their music. Since then I've been a huge Country fan, with my all time favorite George Strait.
I'm like you in that I really don't like Rap songs. The problem for me has been that my youngest child Andrew, who is incredibly special to me (he has beaten death on his first day of life, and then three times since) took up a love of Rap. When he went to FAU he started writing and singing his own songs, and became a sort of legend on campus called Deja Drew. One day Woo Tang Clan came to FAU for a one day concert with two major singers. One of them had a problem in that his accompany singer developed a sore throat that day. They asked if anyone on campus could sing Rap, Andrew was called in, and the lead singer offered him something. He said Andrew could Open his show with twenty minutes of his own songs, if he would then be the side singer for the lead throughout the show. Of course Andrew was thrilled, did it, and I was the proudest Father in the world that day.
You have every reason to be a proud dad. I just watched part 2 on YouTube and he is great. Talented song writer and singer. I hope he will continue to find a career in the music industry. He is very comfortable on sage. Thanks for sharing. I enjoyed both videos.
When I just looked at Part 2, I was wondering if that was actually the first part of the show. In Part 2 he starts things out, and I heard C Deezy say he could now do one of his original songs.
Andrew is an incredibly special human being. Maybe its because he had to beat death three times by age twelve, with the first being at age day 2 of life. He had his third open heart at age twelve, and he is like no other human being I've ever met.
The truth is that I've always knows that there was some form of divine intervention with Andrew, and due to multiple events that defy any other explanation I actually feel he was sent here purposely for me in this specific lifetime. For a number of decades now, he has actually in many ways guided me. So who knows; it does give me a reason to believe in existence beyond this one.
Would you believe that beyond the medical miracles with this soul, he actually ended up getting invited into the original beginnings of American Top Team inCoconut Creek (origins of UFC), and trained with the actual fighters for four years. I was told by the original surgeon in his first three days to never let him go any sport other than bowling or golf, and there he was with some of the worlds greatest fighters on a weekly basis. Crazy, but wonderful. Since he had to stop the MMA stuff due to a neck injury, he then turns his time to writing and singing RAP music and actually makes a living that way. He is unreal.
I was initially told I had 6 months to live with my CLL diagnosis.The Lord is always at my side. I had adenocarcinoma 27 years ago. Surgery and cured. I believe we are here for a purpose. Your son is a perfect example. He has beat the odds several times. Make your life count.🙏❤️
We are just one of the unlucky ones who aren't getting antibody response, and that is just part of life. I still feel good that most of the people who are getting vaccinated are getting good response, and that is making it safer for you and me to wander around with less inhibition.
I don't know if your name means you are a true Blackbelt, but keep fighting.
No honor. I am working hard with others to find away out of these maze. Truth is I doubt the T cells will be our knight in shining armor that will save the day. Our T cells are lazy. Boosters might help some, but I doubt it's a guarantee and there may be risks. mAbs look the most promising to me. Patience. Patience. My antibodies are still very high (>1,800) 4+ months post my trial for AZD7442.
Mab's are indeed the solution! The problem in the US is that our medical system is too lame to make it happen. Other countries have similar problems. It clearly isn't in a hospital's best (financial) interest to infuse a patient that is either not very sick or not even infected - even if it can save their life.
Also, it is abundantly clear that many outpatient areas (even ER's) do not want patients with COVID or even possible COVID around.
We (as a country) are so busy getting people free taxi rides to a vaccination that they do not want to take the time to administer a Mab infusion. I'm going to ask my CLL Dr. when I see him (video only!) in a couple of weeks if he can arrange for me to get an infusion. I'll even pay the cash price of the Mab if that makes the hospital happy. I am not holding my breath ...
Waiting around , everyone scratching their head totally unsure of of the immune status of a CLL (or other immune compromised) patient as determined by cheap chemiluminsecent tests that weren't even designed to test for post vaccination antibodies - is pointless. We'll be guessing a year from now as I have yet to see a publication that really puts us one step further to answering that big question.
Sorry if I seem angry about all of this - but right now the biggest danger to my life is not my CLL, but rather the fact that no one will allow me to be protected from COVID. These Mab solutions have been around and proven for months - and still no immune-compromised patient (with or without COVID) can easily get one. It sounds easy to do in theory - but in reality it is far from a sure thing!
You do sound a bit angry...:)Just as there are bars to be reached to be treated for CLL. There are also a couple minor hurdles to reach to qualify for MAB infusion. For us with CLL that qualifier is that we have to have symptoms( even the most minor) and we have to test positive for covid. We also need to get the infusion prior to the 10th day after first onset of covid symptoms. The infusion of MAB works best when given as early as possible after infection. Those who get the MAB early don't get severe disease and dont croak!
Its a blessing to have this option to save our behind. The protocol is not a big deal.
I called my local hospital and explained that I have leukaemia and if i get covid i need the antibodies. They transferred me to those in charge in Emergency and they gave me instructions.
The head nurse at my local Emergency Dept. told me if I feel any symptoms at all. I could come directly to the emergency dept. They said just wear a mask when I come. They said, we will test you for covid and if positive infuse me with MAB while I am laying on a bed in emergency. I said do I need referrals etc? They said No, we handle it all. Thats pretty straight forward!
To make it simpler and easier. I bought the antigen self quick test. Results at home in 15 minutes. I did this to cure a false alarm trip to my local emergency dept. As I really dont want to go to emergency unless I have tested positive with the self test first. Much more convienent that way. Saves me from hours of wasted time if I were to test negative in emergency dept.
As has been mentioned here on this board, many in other countries do not have this option I described above. So we in the USA are quite blessed to have this available.
What I have described above is a simple remedy for covid infection for us with CLL.
Is the Antigen quick test same type of test called Quick Test, that places like CVS is offering free at some locations to see if you test positive? Or is it an antibody test?
Well all local hospitals are different. I tried all as you have described, and no one can even understand what I am trying to set up. If I had COVID, they will likely be no more understanding or efficient than they are now. The common line has been, “talk to your primary care provider. ‘ — go back to where you started.
I have talked to two PCP’s and they tell me to contact the hospitals. It is a joke that no one wants to understand or deal with. You may have found a helpful and willing place - but I cannot. Next stop is my CLL provider at Stanford. But I could wait a week with COVID trying to get a hold of him.
I appreciate that you have devised a plan and set it up for yourself - but it doesn’t seem to work everywhere. Certainly not here.
We need the help of the CLL societies everywhere to get this heard as main stream medicine.
These antibodies can be used as a preventive agent too. A sort of vaccine where you rely on external antibodies. But again, I hear the drone of head scratching in the medical community. Until this becomes an established practice — very few people get anything — even if they foot the bill out of pocket.
So the powers that be are focused on “buying off” non-vaccinated holdouts — and we have to sit here shielding like a year ago. While we’ve been vaccinated, no one will confidently say any of us can test as being immune. I’d give up and wear an N95 everywhere - but the fact that only 40% of the US has been vaccinated makes it all the more dangerous for us.
So angry? Yes, I’m angry. I suspect that others are too.
What I hear you saying is that you want the clonal antibody treatment now. As a preventative to contracting covid.Monoclonal antibody cocktail is not approved for that. I do believe that is why you are running into road blocks.
Actually I have tried to set it up for what you have described. This is too congested around here. Unless you are dying of COVID they don't want you around.
Only now am I trying to get a "pre-emptive"situation set up. The Mab infusions up until now have been bought by the Federal government, so they have a lot of say about when and how they are used.
AstraZenica is about to sell their latest Mab at "market rate" - meaning either it's insurance or self-pay. If priced around Regeneron it's $3K per infusion. That's a small price to pay for a year of being able to live and not hide.
You do see the absurdity in all of this. The FDA won't allow the earlier Mab's to be used anywhere but outpatient - mainly to prevent them from being used on advanced cases. But can't they trust the Dr's judgment as to whether the are using them properly?
It's becoming clear now that the immune-compromised are really in a mess with all of this. So why don't they step up and allow people to be treated for it. To have to wait to get sick, get a fast COVID test (not that easy anymore), and get someone to do an infusion seems pointless. Why not take care of it while they still are well.
I guess they will wait until the fallout from the maskless Memorial Day weekend hits the fan. Perhaps they will see that this pandemic is still dangerous for many people - especially us. It's not like I am asking for anything free.
Hi there, in the same boat. Just learned it recently. Yes, it is discouraging, but the nurse practitioner did say that there's not enough discovered yet on this virus for us CLLers. My feeling is that of being the one sidelined while others with a normal immune system are in the game. I see others without masks and in groups, but I can't "play" with this group. I've never felt so abnormal or health-challenged as I do now. Hopefully time will reveal more for us to resume our"normalcy."
Yes its a real bitch being the small percentage of society who can now go out and resume their lives as if nothing had ever happened; while, we CLL broken immune system members will have to hide out as if we were actors in the TV Show the Walking Dead.
Thanks to the significant percentage of idiots in society who refuse to be vaccinated, we can't even walk amongst the Hurd with the smell of the dead bodies on us and be safe. Without those fools who deny using the vaccine, too few of the Hurd are safe to us.
The fact is that this is life, life is a bitch, and we unfortunately were dealt the wrong cards for the immune system. So I'm going to continue to travel and stay in hotels and eat inside in restaurants as well as outside, but I'll resist purposely being in the middle of crowds like in Theatres and in places like LA Fitness. Oh well, I guess I can't have everything. As long as my condition stays in the Watch and Wait phase I'll be happy.
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