How to beat Scleromyxedema

I will be coming up on my 2nd year since diagnosis in about July this year. I was unable to do a lot of things like bending down to pick something from the floor , eating a meal took an hour or more , my mouth shrunk so badly I couldn't get my dentures out. a lot of difficulty swallowing food and choking a lot. Couldn't open a milk bottle or a can of beans with a ring-pull. My hands were sort of stuck in a state of half open with little variation in movement. Cant get my wedding ring on. I would take a bath in baking soda to ease the itching but couldn't get out without help, I fell back in a couple of times trying. I went for a walk and tripped on a paver, fell over , banged my head and a passer by got an ambulance for me as I was dazed. My balance was very bad and I think that was the mucin in my ears. Another time I fell again just from turning my head to see something. You experience general weakness, loss of body strength , depression, apathy, tiredness with sometimes taking several knaps in the daytime. Getting dressed is a time consuming thing.My legs were bottom heavy giving rise to tripping a lot. Your back looks like curtain drapes as the skin becomes thick and heavy.There is a lot more than the above but I think enough has been said about symptoms.
I have experienced a great recovery now after receiving IVIG treatment but in the beginning I decided to change my lifestyle as I was a heavy drinker which I gave up, no good expecting doctors to heal you when you cant do the right thing by them. I saw a Naturopath and got an herbal and homeopathic treatment to detox my liver which stopped the daytime tiredness. Then after a while I started on fruit and vedgie jucing and then did a course of ionictherapy. all this got my energy up to a much better level but still wasn't near an ordinary level of health.Then I discovered a scientific report on the disease quoting there was a certain bacteria involved which somehow makes use of the mucin. I was aware of an alternative health system which kills pathogens selectively and had the stuff to carry out this treatment and to my surprise it worked to a degree that I can now work all day from early morning till evening around the house and on my hobbies. I still get the IVIG every month but it looks like that will be spaced out a bit or maybe even stopped for a while after the next three treatments to see what happens. So life's good and I won't be going backwards. I'm the 67 year old from Western Australia on your map. I hope others with the disease could get the results I have had but nobody seems interested in fighting it or talking about it.I even had very strong reactions to my suggestions to the degree of someone deleting information I posted , rather waiting for a new wonder drug. IVIG is the best the health service has but it's not a cure and doesn't seem to get people to the levels I have experienced and hopefully end the disease which is in my opinion a very good probability for myself