So, it has been quite some time since my last post AND even longer since my last treatment protocol!!!
I have been busy! Busy traveling, busy experiencing things, and busy Accepting a NEW career in the bio-medical industry! I have ALSO been quite busy working diligently with my doctors for IVIG approvals.
I am super grateful to have been off all medications since mid-2019! I still believe that Lyme Disease is NO LONGER an issue or threat to my better health; Thank you Klinik St Georg! However, I have been experiencing worsening symptoms and the time has come to start a NEW protocol. My symptoms are consistent with nerve demyelination and progressing autonomic dysfunction consistent with autoimmune diseases. (more on my symptoms later)
I was first made aware of IVIG in 2017. I wanted to try everything I could before needing this therapy. Since November 2019, I have been actively pursuing IVIG therapy however, despite my worsening symptoms and proven testing, my insurance has continuously denied my requests, again and again. Tufts Insurance doctors seem to know more about my case than my family of doctors supporting my better health.
I have spent thousands of dollars out of pocket to retest my proven autonomic dysfunction, proven small-fiber neuropathy, proven POTS, and progressing T2 hyperintense lesions … only to worsen my condition by waiting for approvals …
It took worsening symptoms, a week in the hospital, a new diagnosis, and getting a new job with new insurance through Blue Cross Blue Shield to finally shine some light this therapy.
Unfortunately, these tests, which include dozens of blood vials tested, multiple brain MRIs with NeuroQuant, multiple skin biopsies, and autonomic tilt tests, have made it quite apparent that since treatment in Germany, the lesions have gotten larger and the nerve damage has only progressed.
My autonomic neurologist has diagnosed me with a rare and progressive autoimmune disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
The most common symptoms of CIDP are weakness, numbness, and tingling in the legs, arms, fingers, and hands. Other symptoms include fatigue, pain, balance issues, and impairment of your ability to walk. Some people have described feeling as if there were an electrical storm in their arms or legs.
My symptoms are consistent with that of CIDP. I feel great weakness in my legs, burning and tingling in my feet. Sometimes it feels like my legs are not there despite them feeling like they are burning constantly. I have a weakened left side and my walking is more abnormal than usual. The best way to describe the feeling is to compare it to that of when your arm, hand, or other extremity “falls asleep” and it hurts until the blood flow is restored. Imagine that feeling, but just while you’re doing your regular things. The feeling doesn’t just shake out, it’s constant.
According to a study found on US National Library of Medicine National Institutes of Health, the long term prognosis of CIDP patients was generally favorable, but 39% of patients still required immune treatments and 13% had severe disabilities. Mode of onset, distribution of symptoms, and electrophysiological characteristics may be prognostic factors for predicting a favorable outcome.
I have learned that the best therapies for CIDP remission are regular IVIG infusions, steroids, and plasmapheresis. When I was in Germany I had plasmapheresis completed and I vividly remember this being a gamechanger for me! It makes me wonder if I have been dealing with CIDP for a lot longer than we originally thought…
Starting this Friday, I will be starting to receive IVIG treatments at 65 grams per infusion, 3 times per month for the next 12-24 months. Thankfully, these infusions will be covered by insurance, completed at home via KabaFusion, and my new work is willing to work with me, allowing me to work from home during my infusions as they typically take 8 hours (including pre and post meds). I am grateful to finally have received insurance approvals, but it is definitely bittersweet as this new diagnosis of CIDP comes with a lifetime of adjustments, but I believe it will all be okay!
We must Keep on Keepin’ On!
All the best,