Since last post, my husband continues to improve - albeit at a slower rate. Improvements of late have been primarily balance and speech related with more sublte improvements in cognitive function and memory.
He has improved to the point that he was finally accepted to a day brain rehab program recently. This is a big step and is taking a tremendous toll physically but so far so good. One of the earliest improvements my husband experienced was improvement in fatigue and stamina. From sleeping roughly 22 out of 24 hours for months, he now sleeps about 10 hours out of 24 per day. Physically he can now easily endure the rehab program - cognitively his brain still fatigues from concentration.
My husband's balance has improved to the point where he can now put his knickers and pants on while standing about 60 % of the time; otherwise, he sits in the chair to do. For perspective his balance and ability to lift his own legs off the floor had degenerated to the point that I had to put his clothes on him up - manually lifting each leg off the floor and sliding his clothes on. He is also now walking up and down steps - even carrying groceries or luggage without holding a rail.
His speech is up from a low of about 10 words to maybe 15% of normal. He had become almost mute and now he is jabbering quiet a bit although much is still incomprehensible to most. His cognitive function and memory also continues to improve in many subtle ways. He is redeveloping some basic human social skills.
Curiously he has developed a lot of swelling in his neck, temple and above the subclavian vein (collar bone and neck intersection). Lymph glands are not swollen and are soft and supple. Extensive labs including CBC and liver function tests are all normal.
Assumptively began manual lymphatic drainage by Vodder. As a result the areas began to reduce as well as he experienced some additional cognitive brain fog clearing. He is getting this treatment now twice per week. If we skip treatments it begins to puff up again in these areas.
In addition to his high powered continous antibiotic protocol, he had one 21 day round of Mepron. This made him very fatigued. Eventually we tried Benadryl which has been shown in some rat studies to be very effective against LPS induced endotoxin. Amazingly the Bendaryl lifted the fatigue. It's a curious world !
We also press on with other measures from the kitchen sink including heavy supplementation, herbals, methylation, SOD, glutathione, good lymph care, guided imagery, accupuncture, cold laser therapy, detox measures, crainosacral therapy, brain hemisphere balancing , etc...
We continue to battle the previously reported secondary co-porphyria daily.
Overall he still has a very long way to go to have true quality of life. Compared with his fall of 2007 low - he's come miles.
MS bites... leave no stone unturned !