Health Update December 2022

Key points:

-New equilibrium of high maintenance severe ME

-Successful treatments for MCAS & POTS

-Humira controlling? Behcet's

-Advances made in pain control

So I appear to have reached a new equilibrium point for now which is something I was not confident would manifest. Thus this update can certainly be seen as a positive.

My new balance point is roughly comparable in terms of functioning as to where I was pre-IVIG but requiring much more extensive medical care to maintain and with a more complex symptom profile.

The biggest change is the recent addition of Humira which appears to be stabilizing my Behcets. While it is impossible to say how long it will hold it could conceivably prevent major neuro flares for years. This in combination with colchicine is my primary Behcets treatment.

In terms of ME, I have essentially been trying just about anything I think might help me. None of these are well evidenced and it is impossible to say which have helped or whether it has simply been luck. The main stabilizing factor has been my consistent use of IV hartmans through my port which in combination with Ivabradine has almost completely resolved my tachycardia.

I have been extraordinarily lucky to receive excellent palliative care including powerful sleep meds and gabapentin which has helped my pain and sleep. We will hopefully still be seeing future success with this as we add CBD vape and sublingual ketamine.

I am also receiving excellent treatment for my MCAS which is much more stable. While I am still eating a restricted very low histamine diet, and must take DAO with each meal, it is nutritionally complete and thanks to my immense privilege at having a dedicated support worker for cooking is quite yummy as well.

Humira and Xolair injections as well as h1 & h2 blockers, ketotifen, quercetin, and the COX2 inhibitor Celebrex have all been essential in stabilizing my symptoms. A steroid inhaler has also been extremely valuable for managing reactions. I am still dependent on close to 20mg of prednisone but am slowly tapering.