18 Month Reboot Update
 

It's been a bit over 18 mos since I had the procedure, and 6 mos since I reported on it last. Current status: pretty darn good!

The MG symptoms remain at bay. My overall function is less than a person of my age without a disease would have, but I can do pretty much what needs to be done, and without looking like a circus sideshow act. I'm currently still using IVIG, Cellcept and I'm down to 2.5 mg of pred eod, with hopes of being ZERO by the end of the summer. I love my pred, but if I can live without it, all the better!

That's the good news! HA! The bad news: My immune system is broken! I had a terrible time getting my blood counts (esp WBC and platelets) to return to normal. My bone marrow was SOOOOOOO lazy after being wiped out by the chemo (the nerve!) In March I finally achieved normal values (after 15 mos!) Well, in early May I got a bad upper respiratory infection. I've been to the doctor and am taking antibiotics. However, pleuritic pain forced me to the ER on Memorial Day and while there, they did labs. WBC and platelets have fallen again---and pretty dramatically. I'm officially neutropenic and thrombocytopenic!

I have emails in to my neuro and onco. My onco had said I may need some more Neupogen to kickstart the bone marrow. I'm suspecting I may need to back off on the Cellcept as it may be overwhelming my immune system. In any case, I am sure we will have a plan soon and if I had to choose to do this again, I would....WITHOUT A SECOND THOUGHT!!!

Anyway, that's all to report for now. Stay tuned for another update in November! Have a great summer everybody!

What you have been through!

Thanks so much for documenting it all. Besides being super interesting, I'll bet it will help the folks here who are considering a reboot.

I do hope you feel much better soon and that those WBC and platelets get back to 'normal' real soon!!

I'm glad you're still doing well! I hope that continues.

Have you looked into nutritional therapies for your immune system? First, research chlorella. It's an amazing plant source of nutrients important for our DNA. Also look at other nutrient dense foods like black rapsberries. Juicing is a great way to get the most from foods and you can do great food combos easily.

If we don't intake the right foods, we get sick. If we intake really good foods, we can feel great. No, it doesn't necessarily mean that we can avoid disease but we can optimize the "tools" our body has to regenerate and keep our immune system healthy.

Sorry, didn't mean that to sound like a lecture! It can be hard to get the immune system back to normal once it's been suppressed. Think of it as growing a plant from seed. You really need to pamper yourself with rest, laughter, meditation, nutrients, etc. to restore yourself! ;)

Annie

Yep, I'm big into nutrition and judicious use of supplements. I juice, make my own yogurt, ferment things and then eat them, etc! That's why this is so surprising to me. I thought I'd finally gotten the problem licked! Back to the drawing board!

I'm still waiting for responses from my doctors. They're probably vacationing! LOL