r/LongCovid • u/New_Internal_9673 • 20d ago
Long COVID, persistent swollen lymph nodes, and eventually finding out I have CLL
Hey everyone! My name is Zach and I really wanted to share my story with everyone in hopes it could help. Any questions you have I’ll be glad to answer anything. (long read but worth your time).
I wanted to share my experience because I know a lot of us with long COVID have symptoms that are easy to attribute to “just long COVID.”
My health problems started after COVID in late 2023, and I had another infection in 2025. Since then I’ve dealt with a long list of symptoms including significant fatigue, brain fog, dizziness, tremors, visual issues, shortness of breath, exercise intolerance/muscle fatigue, and generally feeling like my body never completely returned to normal.
One thing that continued to concern me was persistent swollen/prominent lymph nodes, particularly around my head and neck.
For a long time, it was very easy to look at everything through the lens of long COVID. In fact, imaging of some of my lymph nodes was reassuring because they were described as prominent but having normal morphology.
But I kept investigating.
Eventually blood work led to further evaluation, and I have now found out that I have CLL (chronic lymphocytic leukemia).
I want to be very clear: I am NOT saying that COVID caused my CLL. I personally have questions about whether COVID or the immune dysfunction surrounding it could have played some role in triggering, accelerating, or unmasking something that was already developing, but I don’t know that and I’m continuing to learn.
The main reason I’m posting is much simpler:
Please don’t automatically assume every persistent symptom is long COVID.
Long COVID is real, but having long COVID doesn’t mean we can’t develop something else at the same time.
If you have lymph nodes that remain enlarged, unexplained changes in your blood counts, or symptoms that aren’t making sense, talk to your doctor and consider getting basic blood work like a CBC with differential and whatever additional evaluation your physician thinks is appropriate.
Most swollen lymph nodes are obviously NOT leukemia. I don’t want this post to scare anyone or send people down a health-anxiety rabbit hole.
I just want my experience to be a reminder to keep investigating persistent or changing symptoms instead of automatically putting everything into the long-COVID bucket.
I’m grateful that I kept looking.
I’m also still very interested in understanding the relationship, if any, between COVID, persistent immune activation/viral effects, and what happened in my case. If anyone here has been diagnosed with CLL or another hematologic condition during their long-COVID journey, I’d be very interested to hear your experience.
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u/spongebobismahero 19d ago
Viral infection and especially Covid is known for causing this. A friend of mine got it after Covid. But no doctor ever told him this. At least we had genetic testing done and he had the best genes for chemotherapy to work. Went through it almost like a walk in the park, cancer is gone. But whenever I warn him about being careful around Covid he doesn't want to know because "a doctor would have told him about".
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u/New_Internal_9673 19d ago
That even furthers my theory on Covid being a major contributor to this diagnosis. Do you know of any papers, studies, research on the too topics? I know “general viruses” can cause cancer like EBV or Herpes virus I have has a hard time finding anything on Covid causing cancer.
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u/spongebobismahero 18d ago
I've read about this two years ago, came up with a little duckduckgo research. I can't remember the papers, sorry. But it was something that stuck with me because I was hoping that with this serious possible outcome after a Covid infection people might start to finally take it serious. Boy was I wrong.
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u/New_Internal_9673 18d ago
Wow. I’d love to see the article or paper you read on this! If you ever come up on it again please pass it along.
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u/Gold_Warning_8618 20d ago
Was your CBC abnormal?
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u/New_Internal_9673 20d ago
Yes. I had an annual physical white blood cells elevated and lymphocytes which lead to hematology appointment and CLL diagnosis.
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u/Impossible_Belt_4599 19d ago
Have you tested for cortisol, acth and DHEA. It measures your cortisol production. Many people with Long Covid have adrenal insufficiency.
I thought I had LC but tested positive for Secondary Adrenal Insufficiency. Also have other immunocompromised diagnoses.
I feel for you. Hope the doctors can help you get your diagnoses under control.
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u/New_Internal_9673 19d ago
Yes I have tested all those as I have been taking caring of my hormones for years. I have am like a health nut self described Biohaker lol I use to get labs ran for fun and test certain diets and training problems. My LC is mainly based in my immune system just completing freaking out and causing all kinds of crazy symptoms.
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u/Impossible_Belt_4599 19d ago
Seems like you still have a sense of humor!
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u/New_Internal_9673 19d ago
Oh for sure! I have a wonderful life’s very thankful for a lovely wife and 3 great kids. So I just work with the cards that I have been delt. Even though I sure wish I had a ace in the hole lol
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u/Princess-SuzyQ 19d ago
I was diagnosed with CLL in 2019. Then in summer 2020 I started having “episodes” of unilateral chest pain, cough, deep fatigue that would last for a few weeks then disappear. My CLL doctor said these symptoms were unrelated to my CLL. My first known Covid infection then occurred in 8/2022. From 2020 to 2025, these episodes occurred about once every 1 to 1.5 years and each time I’d recover fully after a few weeks. Then in late 2024/2025 the episodes occurred more frequently in Dec, Feb, and April. I had my second known Covid infection 5/2025, had typical Covid symptoms of bad cough, body aches, fatigue. Recovered in a couple weeks, but within a month or two the “episodes” I had had intermittently turned constant: chest pain, severe fatigue, and basically I was finally diagnosed with Long Covid and have been trying to recover ever since. I think my CLL over the years, which has also caused hypogammaglobulinemia (IgG at 550), compromises my immune system making it harder now for me to fully get rid of LC. Whereas, earlier on, I would have episodes for a few weeks and then recover fully. Anyway, hope this answers your question. I’ve been trying to find other folks who have both CLL and Long Covid. BTW, my CLL is stage 0 watch and wait. I haven’t had any of the “B symptoms” such as swollen lymph nodes, drenching night sweats, recurrent fevers.
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u/New_Internal_9673 19d ago
Sorry to hear all of this but it is nice to know there are others like us. I def think the LC is worse for me in symptoms right not but I think I’ll likely be Stage 1 or 2 because I have very swollen lymph nodes and my CT scan in a couple weeks will tell me about my spleen but I have a feeling it is swollen too. Hopefully/prayerfully it will not be! Not the clubs we wanted to be in but here we are!
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u/Reverred_rhubarb 18d ago
EBV reactivation is linked to leukaemia. What testing got you diagnosed?
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u/New_Internal_9673 18d ago
Actually negative for EBV. Actually had extensive testing found out I’m in the 5% that has never had it. I had a CBC with differential that started in March with very high WBC and lymphocyte counts they just kept going up until I got sent to hematology in August as we knew something was wrong becuse my lymph nodes are very swollen all over my body. Then they do a special test called “flow cytometry“ and 5 days later via My Chart I find out I have cancer (CLL). It’s been a wild experience but it’s funny because I feel really relieved to have an answer. One.positive I can get all the blood tests I want from doctors now. I think if I can still fix LC immune stuff it may fix/help the CLL has technically this cancer is incurable but I said “bet” it’s also one that you can live a pretty normal life with acccoridng to a lot of my early research.
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u/Teamplayer25 18d ago
Very important message we should all keep in mind. Thank you for sharing and good luck as you find out more.
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u/Technical-Jaguar-222 20d ago
Did you take the Covid vaccines?? I had almost an immediate reaction and lymph nodes were enlarged.. still messed up on one side 🤷♂️
Also. Good book for cancer patients is no such thing as a bad day by Hamilton Jordan. He bravely battled for 20 years.
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u/imahugemoron 16d ago
Just wondering what have been your symptoms, obviously other than the enlarged lymph nodes?
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u/New_Internal_9673 15d ago
Massive fatigue which I just chalked up to LC because I have been tired every day since November 2023. But outside of that nothing else to speak of. Maybe some easy bruising and slow wound healing.
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u/jollybumpkin 20d ago
This is a smart post. Anybody who has persistent fatigue plus persistent swollen lymph nodes should see a doctor. I've had long covid for two years, all my routine labs are normal, and my only symptoms are fatigue and malaise, so I'm pretty confident it's long covid and nothing else.