On January 5 I began to feel ill, like really ill. Streams and streams of mucus from both nose and eyes, painful sinuses, painful teeth, painful head, sore throat. It was so bad I could not sleep and certainly did not want to eat. Because there was no fever and no coughing and no loss of taste my dr hesitated about sending me for a covid test. But after it was getting worse for a few more days I went for a covid test on Friday 8. The results came back that evening showing a negative. That was a relief on the one hand but on the other hand it left me wondering what the hell was going on since I felt worse and worse. Now the main problem became the throat which was excruciatingly painful and completely inflamed and swollen. Of course it was now a weekend so my doctor was not available. I reached him on Monday morning and he saw me immediately. I was in a sorry state! He prescribed an antibiotic : Azithromycine 250 mg ( Zithromax 250 mg Car pell Plq/6 ) at two tablets a day. At this point I was feeling it was beginning to move into my lungs and I was scared. The dr did indeed hear some bronchial disturbance when he checked me. But luckily that antibiotic did wonders for me. I began to feel better very soon and then slowly but surely improved over the following 8 days. After 9 days I stopped with the antibiotic and have been feeling weak and tired but no longer really ill. I have been resting a lot and sleeping a lot. But....... I needed a new covid test because I was going to have a basal cell carcinoma removed next Monday and they required me to do a covid test for that. So I went yesterday for the test. This morning I was phoned by the laboratory to tell me that I was covid positive!!!! I was also told that it was at the end of the covid illness. When I discussed it with the person who phoned he said that It would have been the illness I had a few weeks ago and that the test had been a false negative. He could not give a good reason for that.
So here I am, covid positive and contagious though not feeling that bad at the moment. It is a shock but also relief since I felt very down at the thought that an 'ordinary' virus could make me that ill and had been wondering what my life would be like from now on if I had to be afraid of every infection that came my way. I have a husband who is healthy and who goes about much more than I do and he brings infections to me which hardly affect him but make me ill. This time too I think it was him who brought it to me since he was feeling unwell for a day and a half a few days before I became ill. I have basically been shielding so it is unlikely that I would have caught it myself from the outside world.
The question I have now is : What about the vaccination for covid? I have an appointment booked for March 19 for the first vaccination. I assume I will be through this covid episode in a week or so and I assume I will have antibodies. Is it worth it to still have the vaccination ? It is after all hard on the body to be given a vaccination and if I already have antibodies why do it? Or why do it now? Does anybody have some words of wisdom and advice in response to this question?
Many thanks for your response,
Kunderke
Written by
Provence
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Oh boy, sorry to hear you were sick. I think your CLL specialist may be the one to answer your vaccine question, that person is likely associated with an immunologist/in hospital more & can more easily reach an immunologist to weigh in on it. I would specifically ask, "can you ask an immunologist colleague to weigh in".
Data from clinical trials indicate that mRNA COVID-19 vaccines can safely be given to persons with evidence of a prior SARS-CoV-2 infection. Vaccination should be offered to persons regardless of history of prior symptomatic or asymptomatic SARS-CoV-2 infection. Viral testing to assess for acute SARS-CoV-2 infection or serologic testing to assess for prior infection for the purposes of vaccine decision-making is not recommended.
Vaccination of persons with known current SARS-CoV-2 infection should be deferred until the person has recovered from the acute illness (if the person had symptoms) and criteria have been met for them to discontinue isolation. This recommendation applies to persons who develop SARS-CoV-2 infection before receiving any vaccine doses as well as those who develop SARS-CoV-2 infection after the first dose but before receipt of the second dose.
While there is no recommended minimum interval between infection and vaccination, current evidence suggests that the risk of SARS-CoV-2 reinfection is low in the months after initial infection but may increase with time due to waning immunity. Thus, while vaccine supply remains limited, persons with recent documented acute SARS-CoV-2 infection may choose to temporarily delay vaccination, if desired, recognizing that the risk of reinfection, and therefore the need for vaccination, may increase with time following initial infection.
For vaccinated persons who subsequently develop COVID-19, prior receipt of an mRNA COVID-19 vaccine should not affect treatment decisions (including use of monoclonal antibodies, convalescent plasma, antiviral treatment, or corticosteroid administration) or timing of such treatments.
I know a couple that contracted Covid in November. He was hospitalised in ICU and died 10 days ago. His funeral was yesterday. C, his wife, although extremely ill, wasn’t hospitalised. This Monday she has contracted Covid again and was unable to attend her husband’s funeral
Without a negative covid test after the first infection, it’s hard to say definitively that she ever completely cleared the virus from her body. Was it a relapse or a new infection?
Either way it’s extremely sad for her. My condolences.
this must be so very horrible for her. What is the lesson for me? That I should not be complacent about having had covid and being protected once I test negative?
I’m part of a support group of ex ICU patients and their families. Many of them have had Covid - there isn’t one of them who sits on the fence about having the vaccine.
My understanding is the NHS won't vaccinate if a subject has had a positive test for corona virus withing the previous 4 weeks, I see your in in France so perhaps different criteria but I'd be confident you will be good to go come your date in March. As far as testing goes it's my understanding also that after coronavirus infection a PCR test may return positive for some time but that the subject is not infectious. That may not be the case for immuno-compromised people such as ourselves. I recall some studies suggesting we may carry it longer. It makes sense to me because even a low level head cold can sometimes take some shifting.
My concern is not only whether the medical authorities will agree to vaccinate me, but also whether this is a good idea for the health of my body. I am in the rather unusual situation that I have a GP who is very against vaccination in general, believing it weakens the immune system and that for me with my already compromised immune system this is risky. On the other hand I have a haematologist who does think that I should take vaccinations and I have chosen to listen to him rather than the GP. But now that I have covid and am recovering I am wondering again.
It is not a matter of fear but of wisdom. Why would I put myself in danger of an unproven vaccine? I prefer the risk of getting the virus and having my body naturally developing the antibodies. I have taken measure to boast my immune system through natural remedies and vitamins against this virus. Why not look for natural preventative treatment versus pumping a virus in your system. I told the Dr I will not take it. I question by Dr decisions all the time. They tend to use a cookie cutter protocol without taking into consideration my specific needs. I do not give my Dr an easy time.
Please stop posting your opinion as a value judgement, i.e. "It is not a matter of fear but of wisdom." Don't accuse anyone here of being in fear, or unwise, just because they disagree with you. Things can get intense enough during civil disagreement. But insulting us because we hold a different opinion than you is unacceptable IMO. Even if we are wrong, it's still unacceptable to name-call. I am not "fearful" and time will tell if I have made wise decisions.
Sorry if I offended you. This is not my intension. My desire is that everyone cautiously Question everything. Do not blindly follow the experts but do your own research. It is your body you have a responsibility to take care of it diligently. They is why I question everything my Dr does. I do not blindly follow him. If this is not your way fine but I am wired to question all things. I was on ibrutnib which scared the hell out of me when is saw all the side effects but I got none of them. I am right now I’m ventaclax with zero side effects too. But before I took any of these meds. Is did a full research on them. Then and only then did I allow my Dr to give it to me. I decide not my Dr. I am in charge!!
Pedro, I'd like to know how your wisdom is derived, given:
1) World wide, this week we should exceed the number of people vaccinated against COVID-19 vs having been ill with a COVID-19 infection (just over 100 million).
2) Over 2 million (over 2% of those infected) have already died from a COVID-19 infection. How many have died from their vaccinations?
3) With CLL, we are at particular risk of dying from a COVID-19 infection, both because we are immune compromised and because the median age of a CLL diagnosis is 71, putting nearly all of us into double jeopardy!
4) None of the approved vaccinations are live viruses. There are only two live virus vaccinations in development, in India and Turkey.
5) With CLL, we struggle to naturally make antibodies, particularly if we are in or have recently finished treatment.
6) I've looked into nearly all the many natural remedies that have been suggested in this community to boost the immunity of those with CLL. In every case, where there was reasonable to good evidence that the remedy could work, it did so by stimulating lymphocytes - the very last thing we need when we have CLL!
7) I haven't heard of a single CLL specialist saying we should not be vaccinated. Most are strongly encouraging that we do so.
8) GPs typically see perhaps half a dozen patients with lymphoma in their entire career, of which perhaps two or three might have CLL, so Provence's GP would be unlikely to have much professional experience of dealing with the compromised immune systems of those with CLL.
Updated, now that I see you are under treatment for your CLL: A good doctor will take a personal, rather than a cookie cutter approach and CLL specialists are greatly appreciated because they do just that - treat the person, not the numbers. While we all need to make our own decisions with respect to whether or not to get vaccinated, I would say that wisdom is very strongly in favour of anyone with CLL taking the far less risky path of being vaccinated. Given you are currently being treated with Venetoclax, your research should have informed you that you will have very few B-cells and this, coupled with a reduction in T-cells, is likely to reduce both your B-cell antibody and T-cell response, either from an infection or via a vaccination. CLL specialists still consider vaccination worthwhile due to the low risks of vaccination and the possibility of generating at least some response, which should reduce the severity of a subsequent COVID-19 infection.
I don't think an infection would damage your immune system. Unfortunately for us our own bodies have managed that. I'd certainly go with what the haematologist says.
One of my wife's colleagues had covid and recovered in NOV/Dec. She got her first vaccine in January and her antibodies shot up to 400. That's the max they measure. So looks like her immunity is battle ready.
But how many people get PCR? In the UK, I believe it's much more common than in the U.S.
Most people get the rapid antigen tests. There are many different manufacturers of those, and quality of results vary a lot, both within the same brand and between brands.
It's not clear to me whether PCR to confirm a positive is standard practice after rapid tests. I don't believe it is in the U.S.
In addition, the jury is still out as to how well specific tests work with newer lineages and variants, such as B.1.1.7 UK, B.1.351 South Africa, and P.1. Brazil.
FDA Issues Alert Regarding SARS-CoV-2 Viral Mutation to Health Care Providers and Clinical Laboratory Staff
But the current pre-assessment is that: "Impact on molecular tests remains low". The above article is weeks old, and only concerns the B.1.1.7 UK variant.
The UK has found that checking for the "S-gene dropout" can identify B.1.1.7 and some other variants, which can help track the spread of that variant compared to other variants:
"The Applied Biosystems TaqPath COVID-19 diagnostic tests use a multi-target design, to compensate for emerging SARS-CoV-2 variants and mutations. Furthermore, they are unique among the most commonly used molecular tests in that the multi-target design includes an S-gene target."
I expect there could be news on test quality in the next week or two.
In the UK a free PCR test is available to anyone with symptoms and for certain occupations. Community testing using rapid antigen test kits was trialled on thousands of Liverpool residents with pretty poor results in that overall it missed over half of cases bmj.com/content/371/bmj.m4848
Nonetheless community testing is now being done on asymptomatic people across the country in an effort to identify more cases at an early stage. Health Secretary Matt Hancock said: With roughly a third of people who have coronavirus not showing symptoms, targeted asymptomatic testing and subsequent isolation is highly effective in breaking chains of transmission. Rapid, regular testing is led by local authorities who design programmes based on their in-depth knowledge of the local populations, so testing can have the greatest impact.
We are now expanding this offer to every local authority across the country, and asking testing to be targeted on workers who cannot work from home during this national lockdown, while asking employers to work with us to scale up workforce testing.
Lateral flow tests have already been hugely successful in finding positive cases quickly – and every positive case found is helping to stop the spread - so I encourage employers and workers to take this offer up. We must all do all we can to stop the spread of COVID, right now.
Many observers are concerned that for every asymptomatic case picked up there will be someone who goes off to spread Covid, misled by the test that they are disease free.
I am interested that no one has commented on the fact that I began to feel better from the moment I started taking an antibiotic. It did not make sense to me since the coronavirus is obviously a virus and the antibiotic is antimicrobial. At the time I did not ask questions since I thought it was not covid and therefore assumed it could be a microbial infection. When it worked I was convinced it had been a microbial infection. But now that I know it was covid, I find this very intriguing. I just looked into this via google and got several things in the French language which I won't post here and this from the Lancet:thelancet.com/journals/lanc...
It seems then that azimythrocine was linked originally to dr Didier Raoult's experiments with hydrochloroquine. While the hydrochloroquine has been dropped as not being effective, French doctors seem now to be enthusiastically prescribing azimythrocine as a first line treatment for the coronavirus. I can only be grateful since it really made the difference to me
Well, some of your early symptoms may have been the beginning of a bacterial infection, after the virus caused mucus in your sinuses, that then allowed bacterial infection, that then got into your lungs. Also, the "placebo effect"....just taking some pill that you think will help, could also contribute. And knowing you are "doing something" helps too....I know I was starting to get some anxiety the other day when I got a sore throat & was coughing more the day my ANC was a critically low 0.3.....as soon as my onc put me on PJP prophylaxis, I felt immediately better even though, logically, I knew that if I was starting an infection that medicine couldn't possibly work so fast!
I have only just seen your reply here now. Sorry that I missed it before. That is very interesting, you are suggesting I could have had both covid and a bacterial infection. If that would be so , then my covid symptoms must have been relatively light. I will never know what really happened but thanks for this suggestion that does make sense.
Yes, some people don't realize a major problem with colds/influenza/allergies that secrete mucus or other things that irritate lungs, is that it make one more susceptible to bacterial infections. All that liquid, cell debris, etc. contributes to lung inflammation. Us immune compromised people can be esp. vulnerable. This somewhat recent study stated influenza patients who get this inflammation turning into a true pneumonia, often have a bacterial infection on top of the viral one:
That's why your healthcare providers say "rest, drink plenty of fluids", if you have the energy and enough liquids some of that mucus can thin out, which our lung cilia then push out of our lungs. Of course, some of the energy/fluids is used for other things to fight infection like making antibodies, keeping kidneys working properly, etc. And while Covid itself causes a viral pneumonia, it's possible a bacterial one sets in also. And my understanding of azithromycin in Covid cases against Covid per se have had conflicting study results. IDK if anyone tested to see if the "yes there was a benefit" group had a bacterial infection on top of Covid or not. And we can't just give it prophylactically. We want to prevent bacterial resistance in our normal flora. Azithromycin also has a fair number of drug interactions, which anyone with comorbities may be on an interacting medicine...IDK if there ever will be a "standard" Covid treatment/prophylaxis except vaccination. We all react so differently, with different disease states, and different meds....our docs need to look at everyone separate.
Thank you so much, you have so much knowledge of this and other subjects! It is very enlightening to read your posts. I just have one thing that I do not quite understand 'We want to prevent bacterial resistance in our normal flora'. Since I did have azithromycin for 9 days, with a double dose the first day, what is the risk of that for me? I knew about the intestinal flora but your remark does not seem to refer to that.
The risk for you is likely low. You did a "course of therapy" with a start and stop time. I am sure you are aware bacteria (and some types of fungus) normally live in/on our bodies, and don't cause infections. Our immune systems keep them at low levels. My remark referred to either patients wanting, or doctors prescribing, antibiotics routinely and excessively for extended periods of time in patients that don't really need them. This was done a lot years ago, but we now know that constant or repeated exposure to the same antibiotic can lead to bacteria that are able to live with that antibiotic in their environment. This is what we call "resistance". (Note: this is not the only way bacteria become resistant. Not finishing a prescribed course of therapy can also lead to resistance, that's why people are told not to stop taking the medicine as soon as they feel better.) I'm not a doctor, I was a pharmacist for decades, but the symptoms you described sounded a lot like bacterial infections I have seen doctors prescribe a course of treatment for. Pharmacists are taught "when to send a patient to a doctor" based on their symptoms, when symptoms might need a doctor's intervention. Bacterial respiratory infections can happen after one gets a viral infection. (So the bacterial infection comes "on top of" the virus).
To give a "respiratory infection" example, my mom, who was a heavy smoker, started getting numerous respiratory bacterial infections throughout the course of the year. Instead of putting her on constant antibiotics, her doc simply gave her courses of treatment as they occurred. These infections were spaced out far enough throughout the year that she didn't need to be on antibiotics constantly. She wasn't immune compromised, she just got a lot of infections, very likely because of the damage to her lungs from smoking. Then there's me, an immune compromised patient who hasn't spiked a temperature since getting CLL even with well documented bacterial/viral infections. When I am on heavy immune suppressing therapy, where my ANC is routinely hovering at/less than 1.5, I am given daily antibacterial (and antiviral) treatment. I am at risk for the bacteria that normally live in my body (my "normal flora") growing excessively & causing an infection (opportunistic infection) in addition to pathogenic bacteria causing one. My condition warrants this daily antibiotic, my mom's didn't. There are other types of patients whose risk of potential infection because of their disease state has their doctor believe that particular patient needs constant prophylactic antibiotics. But it's a therapeutic decision the doc makes, and it should be individualized for every patient. They don't want to see resistance happen in their patient, but if an infection is a severe or common enough event for that patient, the risk of infection may be a greater threat than the risk of resistance.
Thanks a lot. But my mind goes further. I am on a daily antibiotic Valaciclovir 500 mg, which my haematologist prescribes routinely for CLL patients on Ibrutinib in order to prevent shingles and herpes. In fact he prescribed 1000mg per day, but I have halved after researching and reading that that should be enough as a prevention. I am very concerned about my gut flora, which I cultivate by various means, but was assured that since this is an anti-viral it should not affect it. I wonder about that though.I was actually prescribed another antibiotic Bactrim, which I was to take on a weekly basis, also as a prophylactic. Since this would affect the gut flora I protested and asked for another option. So now I get a monthly dose of inhaled Pentacarinat instead. I don't think any of these measures had anything to do with me personally at all. I am very concerned about weakening my resistance in my already immunocompromised body.
Another thing you wrote strikes me. You write that you have not had any fever spike for years. Neither have I, even though I have had many flus and colds and gastric viruses and now the covid virus. I find it strange and wonder if this is in anyway related to my immune system being so low.
And my last question : what is ANC? I could not quite follow that sentence.
Sorry to be bothering you with so many questions. You have been extremely helpful already so I feel a bit worried about asking more. Please let it go if you do not have the time for this any more. I am already very grateful.
I enjoy answering questions, it is not a bother! The inhalation medication option instead of an oral antibiotic is one that is successful & approved. It's not an unusual or "off label" way to prevent PJP infection in us immune compromised people. Your daily valacyclovir is technically an antiviral, not an antibiotic. It's only been recently that researchers are showing some drugs other than antibiotics may affect gut flora. If you have had severe outbreaks of herpes zoster(chickenpox/shingles) or herpes simplex (usually mouth sores and urogenital lesions) the risk of the antiviral affecting your gut flora may be worth the risk of any herpes virus outbreak. I take valacyclovir for this reason, I get mid to severe viral outbreaks even when my neutrophil count is normal. ANC is the medical abbreviation for Absolute Neutrophil Count, which can help determine risk of infection. It's one of several monitoring parameters used in modifying many drug treatments, especially any treatment that affects immune response. Anyway, my viral outbreaks are awful for me. They are often extremely painful & uncomfortable, and my skin often cracks leaving me susceptible to infection through those cracks. When I am able to, I am going to get the Shringrix vaccine at my docs request. Studies show Shingrix can lessen the severity of outbreaks, if not prevent them, and might help lessen the severity of my outbreaks. (I was unable to get Shingrix the past few years, first there was none available, then Covid, then I am under treatment again. The only vaccine I am going to take while under treatment is the Covid one.) You may want to discuss this Shingrix option with your doctor if you feel very strongly about taking meds that potentially affect gut flora, and if you have no objection to vaccines. But I believe eating a variety of healthy foods, prebiotics as well as probiotics, help offset any medication effect on gut flora. This whole research into "gut biome" is still relatively new IMO. We don't really know the ratio of "bacteria that might prevent cancers" versus the "bacteria that might induce cancers" that people are wondering about. If may turn out that having only a few of any "cancer preventing" gut bacteria is better than trying to change gut biome to a higher percentage. It may not. We just don't know, and it will likely be years before any recommendations come out. Other than studies saying really long lived people generally do not eat a lot of foods that are highly inflammatory, highly processed, or full of chemicals, that's the best data out as far as I know.
Once again, you are so helpful in explaining things to me that I have long had questions about. I see my haematologist once every six months and he is always in a hurry because the waiting room is full, so there are many questions that don't get asked. Also of course because it is all in French and though I manage it is not optimal for me. When he told me to go on the Valacyclovir he told me it was primarily to prevent Shingles. I do have herpes and get outbreaks when not on the Valacyclovir but they are not severe. A little discomfort is all I experience. So there is a question there whether it is worth the disruption of the gut flora. Until you confirmed it in your post I did not know whether there was an effect on the gut flora, although I suspected it, since the doctors kept on telling me that because it was an antiviral it would not.Because I was suspicious I halved the dose that I was prescribed , from 1000mg a day to 500mg a day. That is enough to control the herpes - I have no idea whether it is enough to prevent the Shingles, but I thought I could immediately double the dose again when there is any suspicion of Shingles starting.
I do take probiotics every day and eat a diet full of prebiotic food, as well as kefir and kombucha. I follow Chris Woollam of Cancer Active and he has convinced me of the importance of the gut flora as a support to the immune system. Since I have a weak immune system ( low gammaglobulines ) it seemed all the more important to me.
I am sorry to hear how tough things are for you, both in terms of your herpes and with your risk of opportunistic infections.
Any thoughts about why you and I don't spike fevers even though ill with infections?
I was recently speaking with someone who got covid last April and then recently got the vaccine, and she had a pretty strong reaction to her first dose of the vaccine. So, if it was me, I would definitely get the vaccine, but I wouldn't be in a rush to do so. Supposedly after getting covid you have increased immunity to it for three months? So if it was me, I would give myself time to recover before getting the vaccine.
I had Covid like illness back in March 2020 which included the cough, high temp, loss of taste & smell etc. I had an NHS antibody test in July which showed I had none, although most Dr's I've spoken to believe I had Covid at that time, so maybe we CLL's don't keep our antibodies that well.
I spoke to a haematologist on Weds & she said that whilst the vaccine might not be as good as it will be for others without CLL it is still better for to have it & get some immunity rather than none.
I had my jab on Friday & I can say I didn't feel anything & I've had no side affects other than a slight soreness where the jab went in, so my advice would be if you're offered a jab take it.
Yes I will take it , but my only question is when. For you it was quite a long time after your illness. I am still covid positive right now and my vaccination is booked on March 19. I think I will postpone it two months or so.
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