Back at work....barley

Read the previous blogs for more info.

Quick recap, I had a sinus infection for 2 years. Multiple surgerys, major hospital can't find problem. I posted a list from my tracking app I use for my medical stuff. I'm now tired all the time, in pain, sleep issues blah blah blah. I officially have CFS and a bunch of other things.

Multiple Drs have said they don't know what is wrong with me, some insinuated I'm not sick, but my blood test show major changes. I still get sinus infections every month.

After taking a few months leave I am feeling better. I decide to go back to work. I feel great for both a week, then I start not feeling great and go back to the same fatigue levels before I went on leave. The dr action slows down. I see my pcp and pain dr monthly.

My pain dr is amazing, he uses many pain meds that all my other Drs have never heard of. He does myofacial injections in my back. He sends me to physical therapy. I do the exercises they ask me to do. I end up missing a week of work because of the pain I go back to the pt place and they realize they fucked up.

They do traction on my head, essentially pulling my head to help with my back pain. We also do dry needling. Then they use Kinseo tape on my back and hands. This helps a lot.

Their isn't a lot of movement other then me struggling to work. I kind of give up on finding answers.

My rheumatologist decides it isn't arthritis and we don't do a biological.

Fortunately my wife's aunt that I talked about earlier is on the board of one of the major CFS orgs. She puts me in touch with a immunologist. Typically we are very skeptical of Drs. We don't get our hopes up.

This dr is truly amazing. He runs 38 tubes of blood on me. We had to stop and come back for 10 of them.

He is actually excited to read my 300 pages of my medical record I keep in a binder. I also have a app full of my medical info and every blood test on an excel doc. Most Drs just don't want to touch it.

He finds I have a primary immune deficiency, selective ige subclass 3 with no lift for a vaccine challenge. He sets me up for ivig infusions every 3 weeks. I've done 5 infusions so far and it knocks me out for about 6 days. I haven't seen a lift in energy but the dr thinks it will take 6-12 months to get s big lift. My sinus infections are better

I end up going on leave knowing I probably won't be coming back. My work has been amazing about accommodations. They have offered anything to get me back on the job. I'm officially without s job for the first time since I was 15 years old.

That takes us to today. It's been 4 years since I started all this. I've learned a lot.

My next blog will be about my experiences in Katrina. My sister who is a phd thinks I am sick today because of that. It's up for debate.
Likes: JaimeS


perhaps you can ask the immunologist for an LTT ELISPOT to rule out Lyme, just to make sure...

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