Aa
newly diagnosed and terrified
hi. this groups seems extremely knowledgeable. so after moping for 2 days, i decided i should reach out for support and/or information. all i can do since my doctor told me Friday that i'm positive for antibodies is read about this disease and it's scaring me to death. on top of that, the new primary doctor who had my blood drawn Friday is out of town for the week, so i feel really alone. he says they should know by Thursday if i have active infection. they'll tell me on the phone if it's negative, but if it's positive they'll tell me i have to talk to him when he returns the following Monday.
my main issue is i'm having fatigue right now and i don't know what's going on with me. i'm also epileptic - i get atypical partial seizures that take a month to recover my energy from afterward. they are debilitating. i feel close to seizure a lot lately. i suspected yesterday that i have the hepatic encephalopathy, because i've had insomnia for about a week, and fatigue and brain fog. today i waited too long to eat breakfast, so i lied in bed for an hour or two afterward because i was too weak to want to get up at all.
it's also a very long story how i got diagnosed and how i got worse lately. and i have raynaud's disease and my fingers are absolutely freezing for some reason, and the heat is off for the summer already here. so anyhow, my mind is going and going, thinking - is it a blocked gallbladder? (i'd gotten pale stools while taking turmeric recently, which went away when i stopped.) is it ammonia buildup (encephalopathy) from my liver being bad? will they believe me if i go to ER or urgent care? (i have been neglected and worse by doctors for years, which probably is why nobody listened to me for years when i asked what is wrong with my liver and why am i allergic to everything i take)...
so, with doctor out of town, no reliable history of good medical care even for my seizures or doctors who listen to me or understand that i have a strong intuition and understanding of my body, and a week or so to wait for my titer results, i'm miserable. most of all, i want to know if any of you had this ammonia and toxin buildup in the brain... and if you have any layperson suggestions as to what to do. i'm considering going to an urgent care or ER tomorrow, as i read they can give you stuff to get the ammonia out. thanks for any feedback.
my main issue is i'm having fatigue right now and i don't know what's going on with me. i'm also epileptic - i get atypical partial seizures that take a month to recover my energy from afterward. they are debilitating. i feel close to seizure a lot lately. i suspected yesterday that i have the hepatic encephalopathy, because i've had insomnia for about a week, and fatigue and brain fog. today i waited too long to eat breakfast, so i lied in bed for an hour or two afterward because i was too weak to want to get up at all.
it's also a very long story how i got diagnosed and how i got worse lately. and i have raynaud's disease and my fingers are absolutely freezing for some reason, and the heat is off for the summer already here. so anyhow, my mind is going and going, thinking - is it a blocked gallbladder? (i'd gotten pale stools while taking turmeric recently, which went away when i stopped.) is it ammonia buildup (encephalopathy) from my liver being bad? will they believe me if i go to ER or urgent care? (i have been neglected and worse by doctors for years, which probably is why nobody listened to me for years when i asked what is wrong with my liver and why am i allergic to everything i take)...
so, with doctor out of town, no reliable history of good medical care even for my seizures or doctors who listen to me or understand that i have a strong intuition and understanding of my body, and a week or so to wait for my titer results, i'm miserable. most of all, i want to know if any of you had this ammonia and toxin buildup in the brain... and if you have any layperson suggestions as to what to do. i'm considering going to an urgent care or ER tomorrow, as i read they can give you stuff to get the ammonia out. thanks for any feedback.
"Oh god, not another yaker. yak yak yak"
that was kind of mean and uncalled for. i was merely responding to people's posts.
==============================================
good! I've got your attention off of yourself. Wait for your tests, etc, to come back from the specialist(s). We all went thru what you are going thru. I was incredibly depressed and was convinced I had chirossis and was itching all over and this forum really helped me and now I am back to my old obnoxious self waiting for better treatments to come down the tube.
that was kind of mean and uncalled for. i was merely responding to people's posts.
==============================================
good! I've got your attention off of yourself. Wait for your tests, etc, to come back from the specialist(s). We all went thru what you are going thru. I was incredibly depressed and was convinced I had chirossis and was itching all over and this forum really helped me and now I am back to my old obnoxious self waiting for better treatments to come down the tube.
By the way, I did not mean to be rude in that comment. The steps in arriving at an accurate diagnosis of hcv can seem painfully slow and that's just a prelude to the assessment of a person's current situation, assuming the diagnosis is positive. Couple that with any other pre-existing medical conditions and a person's mind can race with all sorts of possibilities. Good luck as you take the initial steps. Cart and horse and all that.
i know this is a long thread, but i forgot to add that i've had swollen glands on and off for about 4 years or more too. i have to check my notes, but i think i had them after the bad MRI w/contrast. and i may have had them the summer 3 years ago that i got so ill i thought i was dying. it was not long after the MRI. it started with feeling nauseous/dizzy and near-seizure after eating certain foods - once it was fish, other times other nutrient-dense foods. then it'd get to be more often, until i was nauseous and dizzy and near-seizure after every meal, and soon i was feeling that way all the time.
my labs came back normal. the doctor blamed anxiety (i know that wasn't true and told them so) and prescribed pills for that which i didn't get filled. however, i'm pretty sure my sodium test was low or something (i forget the details), so there was something going on. i'd been taking calcium carbonate, so i blamed that for neutralizing needed digestive acid. and i was drinking tons of water and biking in the hot sun without replacing lost salt. i started drinking electrolytes and eating more junk food (carbs etc.) and fewer vegetables and got better. i got more labs done shortly after by my internist and they were normal again.
so, my point is: *if* i were currently in ESLD, isn't it likely some of my tests all those years would have come back abnormal while i was still *in* the pre-ESLD part of the disease? lately i'm suspecting maybe i was going through liver disease that summer. (i was also taking coconut oil, so maybe that killed off virus from what i read about monolaurin and lipid-coated viruses.)
my labs came back normal. the doctor blamed anxiety (i know that wasn't true and told them so) and prescribed pills for that which i didn't get filled. however, i'm pretty sure my sodium test was low or something (i forget the details), so there was something going on. i'd been taking calcium carbonate, so i blamed that for neutralizing needed digestive acid. and i was drinking tons of water and biking in the hot sun without replacing lost salt. i started drinking electrolytes and eating more junk food (carbs etc.) and fewer vegetables and got better. i got more labs done shortly after by my internist and they were normal again.
so, my point is: *if* i were currently in ESLD, isn't it likely some of my tests all those years would have come back abnormal while i was still *in* the pre-ESLD part of the disease? lately i'm suspecting maybe i was going through liver disease that summer. (i was also taking coconut oil, so maybe that killed off virus from what i read about monolaurin and lipid-coated viruses.)
From positive antibodies to end stage liver disease in 20 comments. That faster progression than a double-lane drive-thru at a McDonalds.
"even before you end up in end stage you can start having symptoms of ESLD.
In fact I was reading somewhere recently where AST ALT go back almost to normal as end stage approaches sometimes...because so little liver is functioning so readings can be deceptive."
oh no. maybe i should go to the hepatologist anyway or just if the virus is active? i may have beaten the virus but still have liver damage, is what i figure. anyway, i always suspected and heard that sometimes certain normal standard tests don't necessarily mean that one is ok.
"it sounds like you are describing both allergy and/or over reaction to drugs. Obviously people carrying HCV for years have compromised immune systems and hence more chance of an allergic reaction, but as the liver fails dosages need to be adjusted DOWn as what a normal adult can metabolize and what someone with as much liver tissue left as a two year old are quite different."
and this *really* scares me. i react to tiny crumbs off of any pill. i used to take baby doses, now depending on the drug i can only take a crumb and still probably react.
thanks. i do trust my own sense of things, but it's always hard when someone confirms my fears. :)
In fact I was reading somewhere recently where AST ALT go back almost to normal as end stage approaches sometimes...because so little liver is functioning so readings can be deceptive."
oh no. maybe i should go to the hepatologist anyway or just if the virus is active? i may have beaten the virus but still have liver damage, is what i figure. anyway, i always suspected and heard that sometimes certain normal standard tests don't necessarily mean that one is ok.
"it sounds like you are describing both allergy and/or over reaction to drugs. Obviously people carrying HCV for years have compromised immune systems and hence more chance of an allergic reaction, but as the liver fails dosages need to be adjusted DOWn as what a normal adult can metabolize and what someone with as much liver tissue left as a two year old are quite different."
and this *really* scares me. i react to tiny crumbs off of any pill. i used to take baby doses, now depending on the drug i can only take a crumb and still probably react.
thanks. i do trust my own sense of things, but it's always hard when someone confirms my fears. :)
Have an Answer?
You are reading content posted in the Hepatitis A Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
