Low T-Cell - Bone Marrow Biopsy

Hi @loribmt

I did not do it because I was too scared. They gave me a pill that did not do anything. Then they didn’t want to put a local anasthesia. I was too agitated and a bit panicked so I will have to come back where they will do a sedation.

I don’t feel brave at all but I would be happier if I’m asleep.

I guess the appointment will be this week or next week :/

Hi @loribmt

I hope you are well?

I finally received the results of my Lumbar Puncture which is all fine.

The ASO titer in my blood test is still quite high after 1.5 year still 350. They want to try to give me 2X antibiotics a day for a week to see how I feel. I will see them in a week and potentially we will try cortisoid afterwards depending of how I feel.

I am slightly confused how ASO could trigger all of these symptoms which seems more viral or autoimmune. I also read ASO can trigger autoimmune.

Im wondering if that would make sense to eventually go see an autoimmune specialist but I think for now I should just follow the path this doctor is giving me. She is the head of infectiology in a good hospital.

Can someone explain the IgG, IgM, IgA...
and the significance of Kappa light chains, Lambda light chains and kappa/Lambda ratio?
Are they related to B cell lymphoma, WM and/or Multiple myeloma?

Hi @loribmt

I hope you are well?

I finally received the results of my Lumbar Puncture which is all fine.

The ASO titer in my blood test is still quite high after 1.5 year still 350. They want to try to give me 2X antibiotics a day for a week to see how I feel. I will see them in a week and potentially we will try cortisoid afterwards depending of how I feel.

I am slightly confused how ASO could trigger all of these symptoms which seems more viral or autoimmune. I also read ASO can trigger autoimmune.

Im wondering if that would make sense to eventually go see an autoimmune specialist but I think for now I should just follow the path this doctor is giving me. She is the head of infectiology in a good hospital.

Antibodies are large proteins of the immune system that neutralize intruders, such as bacteria, viruses, fungi, and parasites. There are five main types of antibodies: IgA, IgD, IgE, IgG, and IgM.
To assist you in understanding IgG, IgM and IgA, I found some good articles and videos which do much better job explaining the differences than I can. I hope you find them beneficial.

IgM = Immunoglobulin M antibodies.
https://labs.selfdecode.com/blog/immunoglobulin-m/

Waldenstrom Macroglobulinemia cells make large amounts of a certain type of antibody (immunoglobulin M, or IgM), which is known as a macroglobulin. Each antibody (protein) made by the WM cells is the same, so it is called a monoclonal protein, or just an M protein.
~~~~~
This video shows the differences between IgG and IgA serology tests and what the results can mean.
https://youtu.be/2eRpntScCmI

Though slow and as exciting as watching paint dry, this video lists each of the Antibodies, their structures and functions.
https://youtu.be/VctTbhhw8do
~~~
In reference to the Kappa and Lamba light chains, they are primarily used in the typing of myeloma patients and determining the degree of disease in MM, B-cell Lymphomas and W/M patients.
This article helps give an understanding of a light chain and how the information is used in diagnosing blood disorders.

There are several National Institute of Health articles on using light chain in determination of B-cell lymphoproliferative disorders.

I know you have WM and B Cell lymphoma. How have you been doing since your Rituximab infusions? Have your symptoms progressed?

Thank you so much for sending all of this information
I will read and look at each one.
Currently the diagnosis seems to be Mantle Cell Lymphoma; however, it is complex with a lot of overriding factors due to wild type cardiac amyloidosis with a smaller amount of cardiac AL confirmed with myocardium biopsies.
So far keeping up with vaccines, boosters and Evusheld due to the B cell depletion from Rituxan.
Active surveillance with Follow up in 3 months.
It has been very stressful and isolating with limitation's and cancellations on travel plans and any indoor group interactions.
Your interest is greatly appreciated.
JAM5

Maria, you did it! I was wondering how you made out with the lumbar puncture. You were sedated, right? Did you have any after effect like head or anything?

I’m glad to hear the results of the test were good! That rules out some potential culprits.
The ASO is used to determine if you’ve had a recent strep infection that went untreated. That’s why your doctor is trying the antibiotics to rule out any potential lingering bacteria from a previous strep infection.
Any infection has the potential to trigger an autoimmune condition because the infection is causing our immune system to react to an outside invader. But sometimes it can get so aggressive responding to inflammation that turns against the body.
For the meantime, just as you’ve decided, I’d agree the best course is to stay with your new doctor. She sounds dedicated to get to the core of your problem. I sure hope so, Maria. You’ve been dealing with this long enough. 🙃 Thanks for letting me know!

I share your lifestyle of having to be cautious. I know it gets a little challenging sometimes. But the trade-off is that I’m still alive and having a great 2nd life. Though my life has changed I don’t feel too limited in my normal activities. Not sure if it helps you to know you’re not alone in this. There are millions of us who are immunocompromised and have to be careful, especially since Covid came on the scene.
As long as you mask up, remember to have personal space between people, wash hands often, elbow bump instead of hand shakes, hand sanitizer, etc., you should be able to have a fairly normal life.

You mentioned that the Rituxan has depleted your B-Cells. There’s so much more to your immune system than that. There’s an entire other half that is unaffected by this treatment.
B cells make antibodies and are only one part of your immune system. The other part being your T-cells.
The Rituximab did what it set out to do, with suppressing the B-Cell production to slow the progression of your leukemia.
The Rituximab only reduces the B cell production but should not eliminate them, which is a step in the right direction. After B-cells get told what to do by the immune system, they produce neutralizing antibodies for the specific invader. The neutralizing antibodies block the ability of an invader to attack the cells by bonding to the active sites, making them the first responders of the immune system.

But you have a whole second piece to your immune system that’s in effect, but unaffected by the Drug. T-cells enter the picture later and provide a variety of functions that includes destroying the infected cells. These are the guys that pick up after the antibodies have done their roll, making it your second line of defense.

You have always had a fully functioning second line of defense and the Rituximab should have cleared your system by now. So the B-Cell population should be regenerating.

Let me know if this is helpful?