Low T-Cell - Bone Marrow Biopsy

Posted by mariabrat @mariabrat, Mar 16, 2021

Hi,

I am 31 year old and just had a bone marrow biopsy. After 4 months of tests : MRI (Brain, Abdomen), CT Scan (Thorax, Throat) and very detailed blood test at the hematologist including autoimmune disease, HIV, tropical diseases, viruses nothing was found.

The only symptoms I have is slightly enlarged spleen, on and off chest and throat discomfort/cough, extreme tiredness in the morning. One day I feel fine, one day I don't feel great. It feels like "something is getting activated" except the tiredness remain constant.

Since the T-Cell are extremely low but everything else is perfectly fine (pallets, red blood cells, immunoglobulin, protein levels) they are not "TOO" worried about cancer but they still wanted to rule it out with a bone marrow examination. I am extremely worried and I can't sleep, thinking I might have cancer.

If you have any opinions, advices or tips, I would highly appreciated.

Maria

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peach414144 | @peach414144 | Jun 29, 2021

In reply to @loribmt "@peach414144 After treatment like that, one can only hope Karma pays them a visit later in..." + (show)

Yep. I hang on and hope they will grow with many of life's experiences and learn to a better understanding of themselves and their patients. Some do and then there are the others.

mariabrat | @mariabrat | Jul 10, 2021

In reply to @loribmt "@mariabrat Hi! It’s been a long while since we’ve connected and I’m wondering how you’ve been..." + (show)

Dear Lori,

I hope you are doing well! 🙂 How is your summer going? How is your health?

I realized that I missed your message in my inbox. Things have been going quite good, I started taking Monolaurin and Echinacea and physically I feel better. It is still very unclear about this reactivation - it was positive but my doctor did another PCR and it was not, he concluded that this is not that.

I still know something is going on, I have some moments in the day or week when I feel its "flaring up" so I take more monolaurin but in terms of energy it has massively improved since I started these antiviral / bacterial natural remedies mentioned above, I DO RECOMMEND EVERYONE TO TRY IT :D. The next step is a full Genome Sequencing, which I need the DNA of my parents so that would take a few more months...

Other than that, I got COVID a few days ago (even if I am fully vaccinated). I do not have fever luckily (yahh!) but I don't feel too great - I am quite positive that I will recover fast. I have to say that this is quite challenging mentally as my partner and I are on a break since a week ago. All these difficult events in our life lead to fights and communications issues. My partner lost his best friend two months ago and therefore is emotionally unavailable right now and asked for a break in order to stop this fight pattern that we have. It makes me sad after all the bad things we have been through...I want to give it a chance but I am not sure he does.

Here are the news....Let me know how you are and what you have been doing, always a pleasure to be in touch 🙂

Lori, Volunteer Mentor | @loribmt | Jul 10, 2021

In reply to @mariabrat "Dear Lori, I hope you are doing well! :) How is your summer going? How is..." + (show)

Hi! It’s great to hear from you again! Oh, I’m really relieved that you’re starting to feel better physically! Hopefully you’ve turned the corner with the worst of the symptoms. The Epstein-Barr virus never leaves the body but it can go from active to dormant again with some residual tiredness and such. So keep up your naturopathic remedies if they’re working for you!

I’m so sorry to hear you have Covid even after the vaccine. It can happen. But generally the case will be very much milder because the vaccine gave a head’s up to the immune system. The immune cells recognized the virus when you were exposed because of getting the shot and was ready to launch an immediate attack. Since it’s a new virus, we have no natural immunity towards it, hence the needed Covid Vaccine. I hope you recovery quickly!! I’m sure it didn’t help having an suppressed immune system either. Is your white blood count returning to normal?

It’s sad that your partner is still having such a difficult time accepting the passing of his friend several months ago. You mentioned she was longtime friend and so I’m sure it’s hard for him. But at the same time, from previous conversations with you, I can’t help thinking that he’s choosing to live in the past instead of appreciating the amazing, strong, resilient woman he has in his current life. You were always concerned that he was never emotionally available for you. I think you were doing all the work in the relationship, Maybe this space is good for both of you. As an ‘old wife’…I will say this. There are plenty of fish in the sea. And you deserve someone who will be your partner in every facet of your life. ☺️

On a personal note, I’m still feeling amazingly well and so grateful! Just celebrated my 2nd re-birthday with my transplant. Monday I’ll be in Mayo-Rochester all day for tests and consultations, with of course, another BMBX…your favorite. Haha. Anyway, I’m not anticipating anything but continued awesome news…but I don’t want to jinx it. 😉 Thank you for asking!
Always a pleasure catching up with you! Hugs, Lori (and when you’re ready…go fishing. Giggle).

bustrbrwn22 | @bustrbrwn22 | Sep 9, 2021

In reply to @peach414144 "I guess it is time for a long reply. .can't help it as there is so..." + (show)

@peach414144

I guess it is time for a long reply. .can't help it as there is so much going on. Getting off the subject: The temperature will continue to do as it will. Of course we the people must be the caretakers of this planet. We do not do well with our polluting of the air, the oceans, inlets, cannels, etc. AND what we do with the habitats of the animals and the animals themselves who share this planet with us to me is a disgrace. Shame on all of us. So many of us worry and work hard to bring together the research to help to the many ill and dying humans and animals and then there are the others who destroy the advances we work so hard on.

Anyway getting back on to my little but many health issues: The fingernails on my right hand have been brittle, completely destroyed and revealing the nail bed. Painfull. BUT GOOD NEWS: I started taking hydroxychloroquine about five weeks ago. GUESS WHAT? After seven years of this nail horror the nails are healing. Much of the pain is gone and you can see the smile n my face around the world. Still strugeling with the pain of three autoimmune diseases and other medical problems. My time is almost up with the Pancytopenia. The osteitis pain is horribly painful so why do I continue on? Again, the will to live is very strong. To enjoy a delicioulsy good meal, an interesting and exciting movie, a good and interesting conversation with another human being, to watch a bird, a sunflower grow so fast, to see the most glorious morning glories, to watch the clouds roll by as I lie outside t get some twenty minutes of sun (vitaman D). And all this done with the great pains that come with the Psoriatic arthritis, rheumatoid arthritis, diabetes, hypothyroidism, copd, sleep apnea, ground glass on the lungs, chronic venus insufficiency, A-Fib, kyphosis, osteitis, chronic kidney disease, (also quite painful) Cannot do much about this as there is a MONOPOLY in my county. A monopoly of nephrologists and they do take advantage of this. Cannot be bothered to look up the rest of my afflections. So if my time does not come soon enough then? Sorry, I am feeling very sorry for myself. Some times it helps. To go to a self help group would be a good help but not being able to drive with my now "Low Vision" (Yes another health problem) The most frightening one of all blindness a horror to me.. I am trying to stay strong but it gets harder and harder. Dear God I am waiting for you whenever you are ready for me. Please excuse me.

Jump to this post

@peach414144 I selfishly was looking for information on side effects people may have experienced from hydroxychloroquine and came across your post. i was moved to tears and feel so selfish as i don't have half the issues you do. My prayers and deepest care go out to you. I too feel marginalized by the system but Lori brings up some good points I need to keep in mind. I hope to see more posts from you and I apologize for any extra work I may cause you by reading this post. I am in danger of losing my eyesight and am scared to death. I don't know how you deal with it. You are an inspiraton!

peach414144 | @peach414144 | Sep 9, 2021

In reply to @bustrbrwn22 "@peach414144 I selfishly was looking for information on side effects people may have experienced from hydroxychloroquine..." + (show)

Thank you, thank you very much. As I have always enjoyed helping others in every which way possible. You have made this day a beautiful one. But, now believe it or not yesterday I was given another diagnosis. of: Secondary hyperparathyroidism of renal origin, chronic kidney disease stage 4 (severe). (To repeat what I have been saying on this site: The original kidney doctor had never taken a test other than the blood and urine. and would not listen to me about all my pains and symptoms and has me in stage 3. Which is why I went to another county and this new nephrologist took tests which revealed the above diagnosis.) I will be seeing this new doctor again tomorrow. I am preparing myself to be strong when I hear the rest of the story from him including how (If any) treatments can help. What is happening with the medical field? If this is because of my advanced age of 84 why should I not be treated the same as the other patients? Even with all my ailments I still feel strong enough to go on for whatever many years I may have left. And if it is my age at least explain this to me. I feel as though this is elderly abuse. I am not the one to sue but at lease this should brought forward and explained to the abusive doctor. He should not have left me to continue on with the very painful symptoms unknowing what was happening to me. There are so many kind and helpful people on this site and I thank all of you. And oh yes, I will continue to report hopefully with a better story next time. Love, Peach

peach414144 | @peach414144 | Sep 9, 2021

And I also would like you to know that (also) the hydroxychloriquine somehow is allowing me to walk and not be in the wheelchair. It somehow takes away some of the inflammation.

Lori, Volunteer Mentor | @loribmt | Dec 24, 2021

In reply to @mariabrat "Dear Lori, I hope you are doing well! :) How is your summer going? How is..." + (show)

Hi @mariabrat I couldn’t let another day go by without seeing how you’re doing! It’s been 6 months and I’m curious if your EB symptoms are finally waning and you’re feeling better.
I hope all is well in your life! Have you been able to see your parents recently? Any news in the ‘partner/former partner’ situation? ☺️

mariabrat | @mariabrat | Jan 27, 2022

In reply to @loribmt "Hi @mariabrat I couldn’t let another day go by without seeing how you’re doing! It’s been..." + (show)

Hi @loribmt, its so nice to hear from you! I am sorry I didn’t reply before - The replies were in my spams.

How is everything with you? 🙂

Thanks a lot for asking. Well, I am still not feeling alright but everything seem stable. I am waiting for the full genome sequencing where we are comparing my sibling and parents blood to see the genetics and rare diseases. Its been 6 months already and no news, its a lot of data and sciences 😀

I recently started to feel dizzy and weak everyday and a lot when I drink alcohol as well - like very tipsy and dizzy after half a drink. I went to the doctor and did an ear test and blood and nothing was changed. I guess I can’t do much…

Regarding EBV, we don’t know the truth (my doctor is not convinced) and whether it could be the case, but I still take monolaurin and it helps.

On the relationship side, unfortunately he broke up a month ago, not for love but because of too much fights. I have an anxious attachment style, and my insecurities would be too much too handle. I would bring often concerns as I would need more validation/reassurance. I have to work on that but I’ve realized that being sick and stressed have impacted so much my self-confidence and ability to trust the relationship. Im very sad but he seems to want to be back at some point but I should cut contact.

I will be traveling for a few weeks to visit my family so that will be great to change my mind. How about you? How is the winter treating you and health?

Thanks a lot for your support and follow up

Lori, Volunteer Mentor | @loribmt | Feb 1, 2022

In reply to @mariabrat "Hi @loribmt, its so nice to hear from you! I am sorry I didn’t reply before..." + (show)

Hi @mariabrat it’s great to hear from you! Sorry for the delay. There’s been a flurry of activity the past couple weeks and finally, life has settled down to a slower pace. 😉
Oh golly, I’m sorry to hear you’re still having some issues. Stable is good, but I was hoping you’d be in the clear by now. I really hope the gnome sequencing will at least point you all in the right direction. It’s great you could finally have that done! I know it took a long time to be able to get your parents samples.

I think it will do you a world of good to be back with your family for a bit and a change of scenery! With all that’s been going on with the breakup and not feeling well, this will be some good medicine for you! Nothing like some family bonding and good solid hugs from mom and dad, right?

I’m with you on cutting contact with your ex. He sounds a bit one sided in his relationship in that it’s ‘always what he needs’. That partnership needs to be two-way street instead of a dead end alley. I know you’ll find to someone who will love you and be there for you as a true partner. From your conversations it always felt as though you were the one making all the effort, sacrifices and compromises. Life is so much better when you find partner who works with you, loves you for who you are and wants to share your world. ☺️

Thank you for asking, I’m doing great. My husband and I just drove 1,200 miles to get out of the sub zero weather. So now we’re in the southern US in sunny, warm Florida. Where will you be visiting family?

mariabrat | @mariabrat | Feb 1, 2022

In reply to @loribmt "Hi @mariabrat it’s great to hear from you! Sorry for the delay. There’s been a flurry..." + (show)

Thank you for your kind words!

Wow we were so close! I visited my family's quickly in Miami but I am now in Colombia to visit my sister. I hope you are enjoying Florida a lot - Some warm weather is coming up for this week 😉

You are absolutely right - I will find someone who is 100% ready to compromise and do the work on both side. At the end, I think I was insecure because I did not get the reassurance that I need.

Lets enjoy what we have now and make the most of it! I hope you are having a wonderful time with your partner - its very well deserved!

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