Join Us in Michael's Battle for Health

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Join Us in Michael's Battle for Health

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Hi, My name is Julie and usually I am the one doing the helping! The hardest thing to do is ask for help when you need it yourself but I am asking. Please see my son Michael's note below.

We are doing as much as we can to help out but there is no end in sight and he is not any closer to getting back to work. Thank you for any help you can give.

Well... Ive held off for a long time from making this post... I had hoped when i finally communicated i would have an answer to share as well.

Ive been being evaluated for lymphoma since April 2nd.
It all started around Christmas when I began to have pain along my jaw line and lymphodenapathy in the area. I had no direct tooth pain but they assumed it was an oral issue and removed my wisdom teeth. While this reduced my pain the lymphnodes remained enlarged. I began heavy night sweats and sought medical care again a few months later. I learned my liver and spleen were enlarged as well as lymphodenapathy throughout my body. In the e.r. I received a preliminary diagnosis of lymphoma.

I received referrals to: infectious disease, oncology, gastroenterology, ent, radiology, rheumatologist, and I'm sure others I'm forgetting at the moment. Over the last few months I've undergone a series of biopsies, imaging and testing. My PET scan showed me hot in several regions. Needle biopsy of the abdomen and bone marrow biopsy both came back negative. As well as a series of biopsies performed during endoscopy and colonoscopy.

Eventually infectious disease gave me my first hope of an answer.... I tested positive for a bacterial infection of Bartonella henslae and was told at the time this could be the solution to all of my problems or simply a "red Herring" the result of a compromised immune system.

I completed a month of two hardcore antibiotics that improved some of my symptoms. Then came the next disaster....

My entire throat blistered and swelled to the point of being unable to eat, talk, and barely even swallow liquids. Candida infection, also know as thrush, the result of prolonged antibiotic use.

At this point my team of specialists no longer believes Bartonella was the root of my problems and wants to resume investigation into cancer. They would like to surgically remove a lymphnode from my groin with a month of recovery and several serious possible complications.

I started this journey at 165 lbs and am currently between 125-130. I have had a low grade fever for months and over the last few weeks have maintained a fever of 103+. My body is weak, my mind is gone. I'm tired of this fight and feel like no answer is in sight.

I will not continue down this path of being dissected, poked and prodded with no answers at all. I'm still waiting on my rheumatologist appointment in hopes that my solution may lie in an autoimmune disorder such as lupus but otherwise I'm tapping out.

I'm not looking for sympathy and absolutely do not want medical advice or suggestions. I'm making this post finally so that everyone is aware of where I'm at.

Thank you everyone for your support, friendship, love, laughter, and lessons over the years.

Organizer

Julia Krause
Organizer
Pahoa, HI
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