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For all of our new members, PLEASE make sure one of the first things you do after your diagnosis is to join The PBC Foundation. It's free. There is so much accurate and up to date information there on the disease itself, glossary of terms you might not be familiar with. place to record your lab results
For all of our new members, PLEASE make sure one of the first things you do after your diagnosis is to join The PBC Foundation. It's free. There is so much accurate and up to date information there on the disease itself, glossary of terms you might not be familiar with. place to record your lab results
DonnaBoll
Administrator
in
PBC Foundation
6 months ago
Report: Ceylon Cinnamon Relieves Parkinson's Motor Impairment. Evidence Suggests Remedy of Underlying Disease (repost)
Image credit: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7720887/pdf/nihms-1649509.pdf Can cinnamon spice down autoimmune diseases? This post includes both evidence from the medical literature and personal observation. It was originally posted in 2020 and had been deleted recently due to an unfortunate
Image credit: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7720887/pdf/nihms-1649509.pdf Can cinnamon spice down autoimmune diseases? This post includes both evidence from the medical literature and personal observation. It was originally posted in 2020 and had been deleted recently due to an unfortunate
park_bear
in
Cure Parkinson's
7 days ago
Follow up ultrasound for cirrhosis, shown polyp In gallbladder
Hi, looking if anyone has experience/ info on this? is it common, linked to cirrhosis ? It’s completely thrown me as I’ve been feeling healthy since diagnosis last year. This was my first US since. I was hoping for news that my liver looked slightly better than original scan, as I’ve worked my backside
Hi, looking if anyone has experience/ info on this? is it common, linked to cirrhosis ? It’s completely thrown me as I’ve been feeling healthy since diagnosis last year. This was my first US since. I was hoping for news that my liver looked slightly better than original scan, as I’ve worked my backside
DaveQ67
in
British Liver Trust
6 months ago
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Stopping Injections After 3 Loading Doses
Hi! I’m new here and learning so much from reading all of the posts here. I was diagnosed with low B12 levels earlier on this year, although my PA antibodies came back negative. I was put on injections, and was meant to have 6 over 2 weeks followed by 1 every 3 months, however my GP had to stop them
Hi! I’m new here and learning so much from reading all of the posts here. I was diagnosed with low B12 levels earlier on this year, although my PA antibodies came back negative. I was put on injections, and was meant to have 6 over 2 weeks followed by 1 every 3 months, however my GP had to stop them
Hidden
in
Pernicious Anaemia Society
6 months ago
Progress?
Good morning, not really after any advice just some thoughts from you lovely people. Basically in Oct ‘23 I had a massive variceal bleed, 6l blood transfusion and a 9% survival rate, very jaundice, lost over 3 stone bringing me to just under 6 stone, progonsees liver failure, put on a transplant list
Good morning, not really after any advice just some thoughts from you lovely people. Basically in Oct ‘23 I had a massive variceal bleed, 6l blood transfusion and a 9% survival rate, very jaundice, lost over 3 stone bringing me to just under 6 stone, progonsees liver failure, put on a transplant list
Starlight79
in
British Liver Trust
6 months ago
Wednesday Word
[u][i]
ALT - Alanine Transaminase
[/i][/u] This is a blood test performed as part of your routine liver panel test. It is released more so by the [u][i]
hepatocytes -(liver cells)
[/i][/u] so it's associated more with hepatitis rather than PBC. ALT can be elevated in both non responders
[u][i]
ALT - Alanine Transaminase
[/i][/u] This is a blood test performed as part of your routine liver panel test. It is released more so by the [u][i]
hepatocytes -(liver cells)
[/i][/u] so it's associated more with hepatitis rather than PBC. ALT can be elevated in both non responders
DonnaBoll
Administrator
in
PBC Foundation
6 months ago
F3 Fibrosis Regression
hi all First post and have to say, read a lot of posts and can only thank everyone who contributes and helps educate others about their own personal way forward. So here is my question. How long does it realistically take ( with doing everything possible ) to regress from F3 severe fibrosis to F2?
hi all First post and have to say, read a lot of posts and can only thank everyone who contributes and helps educate others about their own personal way forward. So here is my question. How long does it realistically take ( with doing everything possible ) to regress from F3 severe fibrosis to F2?
Smif56
in
British Liver Trust
6 months ago
Post Op
Done my liver resection on 14 March 2024 coz found tumour in it since 2023. Went through Y90 treatment to shrink the tumour. Doc removed the tumour via keyhole with a drainage wound. After the op, stayed in hospital for 7 days till I’m stable and independent enough to walk on my own so wouldn’t be
Done my liver resection on 14 March 2024 coz found tumour in it since 2023. Went through Y90 treatment to shrink the tumour. Doc removed the tumour via keyhole with a drainage wound. After the op, stayed in hospital for 7 days till I’m stable and independent enough to walk on my own so wouldn’t be
SunnyShoe
in
British Liver Trust
6 months ago
always question
Just this morning there was a post about questioning the legitimacy of a survey about itching - and receiving payment for completing it. Some of you reached out to The PBC Foundation (as did I) to just make sure it was 'for real'. I am just as hopeful that when any of you don't feel the care you receive
Just this morning there was a post about questioning the legitimacy of a survey about itching - and receiving payment for completing it. Some of you reached out to The PBC Foundation (as did I) to just make sure it was 'for real'. I am just as hopeful that when any of you don't feel the care you receive
DonnaBoll
Administrator
in
PBC Foundation
6 months ago
High-dose DHA and dyskinesia (my experience so far)
I'm always too busy lately to find time to write more than a sentence or two, but since Park Bear posted the info about Dr. Mischley's DHA protocol for dyskinesia, I decided I should make time to share my experience. I've been using mucuna plus Rx'd carbidopa since the end of September 2022 (and mucuna
I'm always too busy lately to find time to write more than a sentence or two, but since Park Bear posted the info about Dr. Mischley's DHA protocol for dyskinesia, I decided I should make time to share my experience. I've been using mucuna plus Rx'd carbidopa since the end of September 2022 (and mucuna
1LittleWillow
in
Cure Parkinson's
9 months ago
Nicotine patches vs gum.
if you’re not aware, I’ve been experimenting with the nicotine patch. I found that it’s too much. I wonder if that why the trial failed. I found a couple pieces of gum, 3-4 a day as needed better. I will soon be off meds. They never really worked that good anyway. Nicotine works just as good if not
if you’re not aware, I’ve been experimenting with the nicotine patch. I found that it’s too much. I wonder if that why the trial failed. I found a couple pieces of gum, 3-4 a day as needed better. I will soon be off meds. They never really worked that good anyway. Nicotine works just as good if not
38yroldmale
in
Cure Parkinson's
6 months ago
Is it just me?
Wondering if anyone else isn't sold on the concept of taking a sledgehammer to the immune system to treat RRMS. I am looking forward to these meds finishing clinical trials: * Vidofludimus calcium [It's both anti-EBV and neuroprotective effect] (Link: https://multiplesclerosisnewstoday.com
Wondering if anyone else isn't sold on the concept of taking a sledgehammer to the immune system to treat RRMS. I am looking forward to these meds finishing clinical trials: * Vidofludimus calcium [It's both anti-EBV and neuroprotective effect] (Link: https://multiplesclerosisnewstoday.com
By-Design-1000
in
My MSAA Community
6 months ago
b12 liver stores
Hi everyone, Just a quick question for those of us with PA. When we have b12 loading doses I have read this replenishes liver stores. Can anyone tell me does this b12 always successfully make it into the liver stores? I ask because my body does not reflect this. Loading doses did nothing to alleaviate
Hi everyone, Just a quick question for those of us with PA. When we have b12 loading doses I have read this replenishes liver stores. Can anyone tell me does this b12 always successfully make it into the liver stores? I ask because my body does not reflect this. Loading doses did nothing to alleaviate
brenanddave
in
Pernicious Anaemia Society
6 months ago
Ultrasound/Biopsy show cirrhosis, but fibroscan score is 7.4
I’m somewhat perplexed… since my diagnosis I’ve been told I have cirrhosis, because of my biopsy and ultrasound results. A recent fibroscan score was 7.4, which is fibrosis. Although some parts of the fibroscan were as high as 8. Can someone explain this? My dr. was very vague in his explanation. Thank
I’m somewhat perplexed… since my diagnosis I’ve been told I have cirrhosis, because of my biopsy and ultrasound results. A recent fibroscan score was 7.4, which is fibrosis. Although some parts of the fibroscan were as high as 8. Can someone explain this? My dr. was very vague in his explanation. Thank
Danteskid
in
PBC Foundation
6 months ago
Update
Just thought I would update my situation after being diagnosed with Nash in 2019. After changing my diet and losing 20 kilos I have been told by my surgeon who recently performed an operation to repair a large hiatus hernia that I do not have Nash. My liver has returned to its normal size and it's a
Just thought I would update my situation after being diagnosed with Nash in 2019. After changing my diet and losing 20 kilos I have been told by my surgeon who recently performed an operation to repair a large hiatus hernia that I do not have Nash. My liver has returned to its normal size and it's a
Mizcole
in
Living with Fatty Liver and NASH
6 months ago
Laurie Mischley on Using High DHA Fish Oil to Reduce Levodopa-Induced Dyskinesia (Updated)
https://youtu.be/piDgzpD7oOQ?si=hZfSiPMEqAAg_Kbc Dr Mischley also recommends citicoline. I strongly discourage anyone who is not already using citicoline from starting, because: "patients treated with citicoline experienced a significant worsening 45 days after the medication was discontinued". For
https://youtu.be/piDgzpD7oOQ?si=hZfSiPMEqAAg_Kbc Dr Mischley also recommends citicoline. I strongly discourage anyone who is not already using citicoline from starting, because: "patients treated with citicoline experienced a significant worsening 45 days after the medication was discontinued". For
park_bear
in
Cure Parkinson's
9 months ago
1st year
Just a little post on good news . Im just about to go out and have lunch with all my family to celebrate my 1st year of Liver Transplant 🎉🎉🥳🥳💕💕. I hope everyone else has a great day 💕💕. Stay safe all Dogbot 🐶Dave
Just a little post on good news . Im just about to go out and have lunch with all my family to celebrate my 1st year of Liver Transplant 🎉🎉🥳🥳💕💕. I hope everyone else has a great day 💕💕. Stay safe all Dogbot 🐶Dave
Dogbot
in
British Liver Trust
6 months ago
AASLD organization
www.aasld.org This is the site for the [u][i]
American
[/i][/u] Association for the Study of Liver Diseases. They make the AASLD Guidelines for the Diagnosis and Treatment of PBC. Every one should take the time to read this. Take a copy of it to your doctor as well. They should be familiar
www.aasld.org This is the site for the [u][i]
American
[/i][/u] Association for the Study of Liver Diseases. They make the AASLD Guidelines for the Diagnosis and Treatment of PBC. Every one should take the time to read this. Take a copy of it to your doctor as well. They should be familiar
DonnaBoll
Administrator
in
PBC Foundation
6 months ago
Coping
My story starting in 2020,light headed,weight loss,in and out if the toilet.When i eventually went to the hospital was tokd Cirrhosis,been in and out since,they never explained diet so i have had a couple of burst blood vessels not nice. Now i am aware this us my 1st week of rabbit food!! No booze for
My story starting in 2020,light headed,weight loss,in and out if the toilet.When i eventually went to the hospital was tokd Cirrhosis,been in and out since,they never explained diet so i have had a couple of burst blood vessels not nice. Now i am aware this us my 1st week of rabbit food!! No booze for
Rawai
in
British Liver Trust
6 months ago
Has methotrexate caused liver damage
I had a blood test which showed raised levels of ALP 136, Aspartate Transaminase 68. My GP said that my RA meds have caused damage to my liver!!! I am having a liver fibroscan tommorrow to check for fatty liver. Very anxious but will need to take it one step at a time. Any guidance and advice welcome
I had a blood test which showed raised levels of ALP 136, Aspartate Transaminase 68. My GP said that my RA meds have caused damage to my liver!!! I am having a liver fibroscan tommorrow to check for fatty liver. Very anxious but will need to take it one step at a time. Any guidance and advice welcome
Beanyynwa
in
NRAS
6 months ago
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