Running out of time -- pulmonary fibrosis, pbc, ai liver, sjogrens, hashi
I am new here and the exwife of science writer Dorion Sagan so i have alot of respect for microbiologists and frustration with many doctors who feel they dont have to keep up, change, or know this stuff. i am hoping to find a doctor that is willing to help me, to fully diagnose me and treat me.
I had pneumonia five times in my first year of life and have suffered from ai disease since i was born. I have never had remission but it slowly progresses except when i have flurries of more acute disease where my teeth will break and i get pneumonia and get severe infections. I have always belived an infection causes this,. I have seen a frind as bad as me almost get completely well. No one has ever done a complete infectious disease workup and despite referrals the run one or two tests usually one.
One wellness doc called me the sickest patient they have. I am trying to get long term abx therapy and not be left to die. My family doc, who is usually very compassionate, gave me four weeks of doxy. Doxy really helps pulmonary fibrosis, it may even reverse it.
I have a past hx of tb was treated with isonizid felt great on that. I have positive antimitochondrial antibodies and high thyroid peroxidase.
My pbc was misdiagnosed early on and i was given interferon, which i can say only makes this condition worse.
I have finally put parts of my disease into remission thanks to alpha lipoic acid. It is a miracle. But istill have the infection causing it.my ama tpo titres are normal now, cholesterol and sugar normal, ten pct reduction in liver fat andall fibrosis gone. Lfts now finally normal. Still a little jaundice at night. I had to stop taking metoprolol for some of this to happen.
I have had porpyria symptoms and cant tolerate well many drugs on porphyria lists. I do fine on antibiotics, feel great and my vitiligo starts to go away, until they are discontinued.
I suspect i have human betaretrovirus and cp and maybe more. I also am diagnosed with polyglandular dysfunction.
I am still relatively healthy, thanks to the ala. They are looking at giving me cancer meds but wont give me antibiotics. The cancer meds might kill me. I cant even take methotrexate.