so I had a reactivation of EPstein Barr Virus in May that caused a Monk infection so we put off treatment until I see my doc again next week. To give me time to resolve it. Then , on July 3rd I got Covid and am still with many symptoms. I did have the monoclonal antibodies, but everything is lingering as expected. I meet with my CLL expert next week and wanted to know, will they postpone treatment again? Oh and my blood work shows another reactivation of EPstein Barr amongst everything else not looking great.
And I don’t know if I should be concerned with high Eisonophils? Never saw that before.
Thanks Im advance for your feedback.
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WittyApricot
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Overall, I think docs would prefer not to start treatment that can potentially depress the immune system when someone has an active infection. That being said, sometimes the cancer treatment shouldn't be put off any longer despite a known or suspected infection. It's pretty patient specific; the doc balancing current signs & symptoms of the infection and how severe it is, against the need to treat the cancer. Poodle2 here had treatment withheld a short time, with the doc waiting to see if she could clear up infection first. So your symptoms, labs, and how all diseases/infections are presenting, will contribute to a decision to treat or not, and when and with what.
Yes, I eventually had to start treatment even though I have had an infection since mid March. My consultant did not want to wait any longer as my CLL was making it even more difficult for my body to clear the infection. She said she would not start treating me if I had a fever but a "chronic" infection (as she called it) couldn't make us wait any longer. I have had two episodes of fevers since starting treatment, one treated with IV antibiotics for a day and then 6 days of Co - Amoxiclav orally. The second one, roughly a week later - treated as neutropenic sepsis 3 days of IV antibiotics for neutropenic sepsis and 5 more days of Co-Amoxiclav orally. I'm also on 250g 3x a week of Azithromycin. I don't take it when on other antibiotics but it is a prophylactic antibiotic.
I saw an immunologist to try to deal with the ongoing sinus/eye/respiratory infections. It might be worth having an urgent appointment with one as well as they should be able to make recommendations in terms of your infections and Epstein Barr. Your CLL specialist will probably weigh what is making you more sick and putting you at higher risk - is it your infections or your CLL. In my case, my CLL needed dealing with first and the infections have been causing issues but as long as you know what to look out for and what to do to stay safe, it can be managed, somehow...it's not nice and it can be scary but unfortunately in my case, there didn't seem to be another way out of the Catch 22 situation.
Thank you both for sharing. Poodle I agree about the catch 22…I think I might be in that too! We have put treatment off a few times now and I will know more when I meet with my oncologist next week. I’m going for more blood work today to determine if I need the infectious disease doc again.
I’m sorry you’re dealing with this! Have you talked to your doc about the connection between EBV and CLL. I strongly believe there is one and I’m baffled at the lack of knowledge around this in the CLL specialist oncological community. There are very few resources available but I would definitely mention it to your doctor. I think if we could solve EBV we could solve so many cancers! I would love to see a study around the incidence of people with chronic or recurring EBV and how many end up with lymphoma/leukemia.
One theory I have heard consultants speculate on is that some of us could have a genetic weakness in our immune systems. Which might mean like me we have a poor history of infections and infection related fatigue. And that same weakness may make us less good at killing off dodgy white blood cells in the early stages.
I suspect that the science on blood cancers will look very different in a few decades.
As someone who had big and first known reactivation of EBV followed by, in months, diagnosis of CLL (actually think the CLL preceded and may have allowed reactivation), can find very little research on the combination except an article from an MD Anderson doc about EBV's effect on CLL (not good). Did more than mention (meaning, mentioned more than once), EBV to my oncologist, and he had nothing to advise except to send to infectious disease doc -- but does now have me tested for active viral load when I get my blood tests. I also believe SO MUCH may be EBV, including, of course, chronic fatigue -- and now they believe MS. And of course all the cancers is causes. What frustrates me is they have isolated the virus in a way to allow for a vaccine, but not yet have one.
I know I have been confused that more research hasn’t been done on EBV and vaccine and it’s impact on everything that really is causing so many different autoimmune issues for people.
I think the EBV vaccine ship has sailed for the vast majority of us. We already have the disease in all of our memory B-cells, as well as in some epthelial cells.
The problem with EBV and a few other DNA viruses is that they have 2 diseases states - latent (inactive) and lytic (active). Only the lytic state produces symptoms. In the latent state, the virus is protected from antiviral drugs and the immune system, and exists as circular DNA inside the cell nucleus. It is copied by our own enzymes when the cell splits to replicate. It simply waits for the right conditions to reactivate. So research has been looking at just when and why it reactivates in which type of cell.
In the active state, antivirals can be somewhat effective. But they won't clear out the latent EBV DNA.
Testing for EBV is usually done by looking for antibodies to the virus's capsid proteins. But in CLL patients, it's probably better to use an EBV PCR test.
We need some new science magick to fight these viruses. I think most doctors assume that if EBV is active, it'll be as easy to detect as in a teenager. But consider that some of us already have swollen lymph nodes in our neck and throat, plus fatigue, and that some of us already have atypical looking lymphocytes visible on the microscope. So, EBV activation is often missed as being just CLL unless it is severe.
In addition, treatment with anti-virals in non-CLL patients has not been shown to be beneficial. I don't know that it has been tried in CLL patients in large trials. Much of what I see regarding antivirals concerns organ transplant patients. Some antivirals have serious side effects and interactions with other drugs.
Thank you for that discussion, Seymour. Yes, docs can think symptoms are CLL when it's EBV -- or in my case, think it's EBV when it's also incipient CLL (had GP I went to who confirmed with test I had eBV -- but blood test also had a smudge cell and the report recommended retesting. I went back two separate times to ask to have retesting and each time, told just give the EBV more time (months). Changed docs. Since diagnosed --but had had fierce EBV reactivation. And since had milder reactivations. Lately my viral load has been around 500 (low), and I have read there is thought that a large part of our population may actually have a low activated load if tested. My last test -- back to zero! Yes, there is nothing that removes it from our bodies; best possible is to keep it quiet (latent). It's like other herpes viruses, which is a reason I take lysine -- known for cold sore treatment -- when think it's reactivating. Haven't reviewed the articles you attached but plan to. Thanks for attaching.
My PCR test this time around said negative but my numbers are ridiculously high as if recent infection. I’m above 600 for one and I don’t remember the rest of the numbers but high too. Thinking covid opened the door to this because they are all higher than they were three months ago.
I am familiar with some of the Studies. And my doc hasn’t mentioned the link, but is certainly aware of how it is affecting me. I agree with you that more studies or connections should be viewed in the CLL community, particularly with the fact that it was discovered that B Cells are/can be changed by this virus.
Hey, WittyApricot, welcome to the fairly small (so far as I know) CLL with active EBV club! In addition to getting checked periodically for viral load, I take supplements that I believe MAY help. Starting with monolaurin (Lauricidin is the brand I use). Google it. It's just a medium-chain fatty acid derived from coconut not common in diet. Studies have apparently shown that this fat can disrupt/dissolve the lipid envelope around those viruses which are enveloped. This includes all the herpes viruses as well as Covid! I have taken it 2-3 times a day now since my EBV reactivation several years ago (and this maybe be totally coincidental but was recently VERY exposed to Covid--my grandson with whom I played 3 days in row until he was very sick with Covid, which parents got -- couple weeks ago -- and I never got it, that I know of. Had a couple days feeling a bit fatigued, but I have that anyway, and rapid tests (2) were negative. ) This supplement is basically healthy regardless as I understand it. I also take lysine when believe I am having a reactivation (not all the time, as it counters arginine) as well as some other things. Again, I don't know if any of this works, but some should theoretically help. It will never be gone but trying my darndest to keep it at bay. Hope you can do the same. Good luck fighting this demon (well, both of them)
Thank you for this information. I appreciate it!! I have started taking Chinese herbs know as Lonicera Complex and it really seemed to help, but then came under some family stress and then Covid. CLL has gotten worse and I know I need to treat, hoping things will go well. I have heard of monolaurin recently from ND and will look into getting it.
You may find this recent article interesting - EBV reactivation during infections by other viruses, includicing SARS-CoV-2, and similarities with Long COVID:
I was started on Zanubrutinib two months ago based mostly on a 5 cm node in my breathing airways and nodes in my throat. Labs were good. I started having major BP issues and further growth of nodes in neck after two weeks of what I felt was shrinkage. Not sleeping. BP of 170/100 that wouldn't go down. Not sleeping well. Bad cramping especially at night. Not what I expected. Then I came down with Covid on 8/26/22. Took almost two years of steering clear of it before I got it. Now I can't get rid of it. I did 5 days of Paxlovid and stopped zanu while I was on it and felt great! Not one issue as noted above ! Crazy right ? Until I rebounded with Covid and had to start cefnidir antibiotic for thick green mucous sinus issues. Antibiotic seems to be doing its job. I'm off Zanubrutinib until I can clear the Covid. Doc not too concerned and neither am I. I feel better, once again, off the ZANU however can't seem to test negative. My first home tests were all negative prior to 8/26 then I had a PCR test that was positive so I tried a home test again and showed positive. I was showing so positive on the home tests I didn't even have to time them because it was a matter of seconds before the Covid + sign lit up! I'm feeling slightly better and the tests taking longer to show positive so that's good. I think for myself, going off the CLL meds is helping my immune system fight the Covid. I guess I'm lucky because my CLL hadn't been affected. At least I don't think so as I haven't had labs since 8/10/22. That makes me not happy. Feel like I'm not being followed. Doc not concerned at all. I am. Added some multi vitamins into the mix and feeling ok. I wish you good luck. I also had Epstein Barr virus show up once with neurology labs (had mono when I was 15). Hopefully that wont relapse. I'm going to focus on building my immune system back to where it was before resuming the Zanubrutinib, as long as my labs are still ok. Does anyone know if these "re-activations" of past illnesses were as pronounced before Covid and vaccines and boosters ? Just interested if Covid caused things to go awry in our treatments.
I can't speak for everyone, but my initial shingles was the worst. But I have had some variable pain/extent of infection spread episodes of herpes simplex; sometimes it's more, sometimes less. I have gotten more rigorous about antivirals, and avoiding arginine foods (especially during a breakout), plus adding L-lysine. Far infrared therapy seems to help many of my skin problems. Who knows what percentage of this is the "placebo effect", me *thinking* these things are helping haha.
It will probably be awhile before I start meds again. On Friday I was exercising by walking around the house and turned suddenly without turning my leg and something snapped in knee! I have appt with Ortho tomorow where I see noted a few years back I already had a complex meniscus tear!!!!!! But it never bothered me. I'm hoping rehab can fix it without surgery. Then yesterday shoulder got frozen and knee felt like 80.% better. Then today my shoulder was absolutely fine and my knee crippled me again. I wonder if it's the antibiotics ? Going off Zanubrutinib? Or just a highly coincidental clumsy me!! 😳
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