As the CEO/PRES. of a 501C3 organization dedicated to working with people afflicted
with TBDs we now know the cancer can be one of the lesser known aspects of getting bitten by a tick. I should know as I now have my CLL thanks what my TBD did to my immune system. So, now I feel like a walking target for the unseen army of pathogens
out to get us. But, I am a fighter! Having a support network is essential for our journey through life.
Have you had a diagnosis of Chronic Lymphocytic Leukemia? or PCBC? or both? So sorry for this happening.
The following paragraph tells a bit about the difference in the two. And the link gives more information for our members to be able to get an idea of what you are speaking of.
Primary cutaneous B-cell lymphomas (PCBCL) are a heterogeneous group of mature B-cells neoplasms that present in the skin without evidence of nodal or systemic involvement. The clinical and pathologic features of PCBCL differ significantly from the equivalent nodal lymphomas. Three main subtypes of PCBCL are recognized by the 2016 revised WHO classification. Studies have shown that PCBCLs are characterized by distinct immunophenotypic features, chromosomal aberrations and gene rearrangements which provide further support for their classification as separate entities from their nodal types.
atlasgeneticsoncology.org/A...
Hi, thanks for the support. I was diagnosed with CLL on Dec. 17, 2018. I started Imbruvica on February 26, 2019. The longer I am on Imb. the more intense the side effects are getting.
Having Asthma as well as being a 65+ senior it is very scary as relates to the infamous Virus.
Also, having three tick borne diseases, Lyme complex, Bartonellosis, and Babesiosis now throw in an UTI and I still have a postive attitude...Why not, I almost died last February as my CCL could not be controlled for a long time. That is what I want to share ... live on!
While we are susecptible to the different infections/viruses of every description, we try to keep each other reminded of those dangers. If CLL patients get a tick bite, and the rashes, it will be considered secondary rather than Primary which is what your are speaking of. Neither are something anyone wants, of course. I do hope you get your situation sorted and treated.
You might want to compare the PCBC and Chronic Lymphocytic Leukemia. The following in an overview of CLL diagnosis:
healthunlocked.com/cllsuppo...
Hi, yes, but having an immune system already compromised and getting a tick bite can be very serious if not deadly. All I am trying to say is that we all need to be aware that ticks are
all around us and we need to be aware of the need to be pro active in protecting ourselves.
This is very important for those of us who have CLL and live in endemic areas as I do. That for the info.
Ixodes, I see now, you are saying you have CLL and you you have Tick bite Disease.
Thank you for your warning. It is most important that we be aware of the danger of Tick Bite Diseases. My understanding is that unless the tick bite is treated very early after the bite, the treatment is not easy otherwise and the numbers of very debilitating diseases are many.
DEET has become my summer friend before venturing out. Even within the area behind my home.
Sorry for the misunderstanding of your warning, but it wasn't clear to me that you had CLL. And, it appeared you were saying a Tick Bite Disease caused your CLL.
Thank you cllady01, Yes, that is why I started my organization to help the folks in my area. Now that the Coronavirus is with us I am a walking target being immunocompromised
Thank you so much for understanding. That is what happened to me. I was only diagnosed for Lyme but I also had Babasia. The Lyme kept on coming back regardless
of how many times I was treated for Lyme. Not until I saw a new doctor and was
given a full panel of tests for the many pathogens did Babesia show up and treated did the Lyme respond to treatment.
Hello Ixodes,
I am interested in your initial post about the possibility of TBD being the cause of your CLL. Or have I misread what you have written?
I contracted African tick bite fever (Rickettsia Africae) while working on a farm on the Limpopo River in 1964. I had the fever for about 10 days, but without any treatment. If I remember rightly, there was no treatment back then, and it just had to run its course.
Hi, Seelel, it was determined that my TBD lowered my immune system and my age of 79
was enough to bring out my CLL which may have been in my genes from birth. As relates
to your tick related situation I am going to discuss it with my director of research Dr Robert
Ollar who is a genetic microbiologist. Is this ok with you.
Yes, please do. Since your posting on TBD I have wondered whether my experience in 1964 was when the first CLL cell was formed during the immune response to the Rickettsia bacterium. It was only detected in 2006.
Research between the connection of cancer and tick borne infections is limited.
We do know that once our immune system is weakened we are opened to many diseases. Our genetic make up as well as our age and other factors also need to
be considered. seelel bottom line is that it could be connected.
Thanks for letting me know. When it comes to medical science, 'could be connected' gets used a lot. There may even be a particular word that medics use. A bit like, 'Idiopathic', which means 'of unknown cause'.
If you have opossums around be very nice to them. They eat a phenomenal number of ticks and fleas. I know that I have one or more in the orchard -tripped the wildlife camera. In thirty years + here I have encountered one tick on me and only one on the dogs.
This is good to know! I wonder where I can get a live one, lol. They're always "playing dead" here. I also heard chickens eat ticks, but didn't double check that...
True, chickens do eat tick as well as wild turkeys. Our problem in an endemic area is that
they have the best conditions to multiply. One female tick can lay as many as 3000 eggs.
one deer can have hundreds of ticks on it. We have a big deer population.
Yeah, we have a lot of deer too and it is maddening that it seems that nothing is being done about it--ticks in my area were unheard of a few years ago. I had to put Seresto collars on my dogs and I just feel like I'm being inundated with unwanted chemicals every time I hug my dogs.
What part of the world do you live in?
I had Lyme and coinfections in 2012 and it was a horrible roller coaster experience but I was ultimately successfully treated. I was diagnosed with CLL in 2017 and have wondered if Lyme somehow led to the CLL. My immune system was fine after the Lyme but who knows what happened in my body...
Yes. NatureWaze we really do not know and there is so little money
to conduct the research needed to give us answers. I am so thankful
that the research in cancer. We do have Imbruvica.
Do you know about Fludarabine and the lifelong need for irradiated blood?
Thanks CLL and Sepsis, I'm now holed up at home and a little afraid to go out and about! Plus, how you can have an infection and not know?
What do you do when you are MRD Negative?
WHEN YOUR CLINICAL TRIAL FAILS, WHAT DO YOU DO NEXT ?
What do you all think?
