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Low T-Cell - Bone Marrow Biopsy

Blood Cancers & Disorders | Last Active: Nov 15, 2022 | Replies (162)

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@loribmt

@mariabrat Hi! It’s been a long while since we’ve connected and I’m wondering how you’ve been feeling. Any improvement or any treatments with your EBV?

I know it was a relief to finally have a name attached to the symptoms. Not that it makes the virus go away but at least puts you on a path to getting help.

Have you gotten to see your family this summer? How’s everything else going for you? You always have such a positive, ‘move forward’ attitude and that’s so important for your continued health and well-being. Though I know having a chronic illness can take its toll.

My friends in the Thuringia area of Germany are sweltering. Is it the same in Munich? It’s been the same where I live and believe me, I lose my cherub-like demeanor in hot, drippy weather! LOL. Take care and keep cool! 😎 Lori

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Replies to "@mariabrat Hi! It’s been a long while since we’ve connected and I’m wondering how you’ve been..."

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.

Hot weather is a huge benefit as this pancytopenia creates an unhealthy cold, cold body. Often i sit in an 80 degree room with a heating pad on high and two or more blankets on me and I am still cold but at lease it stops the shaking.

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 🙂