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.
Hi Dharmaqueen I'm just wondering if I'm not the only Lostie on the board (although there are a few here :)
Anyway - don't get ahead of yourself but if you do have this disease it's NOT the worst one to have there IS a "cure" for it. And if you DO have it you do not even know yet what your biopsy would show.......you may have absolutely no need to do the treatment right now or ever unless you choose to.
I agree with Jim - please do NOT make the mistake I did of listening to your primary care doctor. Find a good hep doc or at least a good GI who treats a lot of patients and who is current with the latest journals and such. My PCP told me EVERYTHING wrong (she said I had no fibrosis but the biopsy showed I was already stage 3 = when my thyroid went bonkers she said it was fine I didn't need to do anything but the endocronologist told me it was in very bad shape and I needed to take the meds immediately.....etc etc).
PCPs are good at diagnosing the flu but not when it comes to a disease that is constantly being studied.
Good luck, I hope you just have the antibodies but remember if you do have this one....it can be fixed so it's not the end of the world!
Anyway - don't get ahead of yourself but if you do have this disease it's NOT the worst one to have there IS a "cure" for it. And if you DO have it you do not even know yet what your biopsy would show.......you may have absolutely no need to do the treatment right now or ever unless you choose to.
I agree with Jim - please do NOT make the mistake I did of listening to your primary care doctor. Find a good hep doc or at least a good GI who treats a lot of patients and who is current with the latest journals and such. My PCP told me EVERYTHING wrong (she said I had no fibrosis but the biopsy showed I was already stage 3 = when my thyroid went bonkers she said it was fine I didn't need to do anything but the endocronologist told me it was in very bad shape and I needed to take the meds immediately.....etc etc).
PCPs are good at diagnosing the flu but not when it comes to a disease that is constantly being studied.
Good luck, I hope you just have the antibodies but remember if you do have this one....it can be fixed so it's not the end of the world!
You're getting way ahead of yourself and I wouldn't take or change anything until you hear from your doctor with a proper diagnosis. If the tests show you have the Hepatitis C virus (not just the antibodies) then I'd ask for a referral to a liver specialist (hepatologist). The typical general practioner (and even some gastros) doesn't know very much about Hepatitis C and can end up scaring you even more. Of course, if you feel like you're having a medical emergency you should always call "911" or go to the ER.
-- Jim
-- Jim
Before anything else... Chill...
Now
Let's cut to the chase...
Want to find out if you have hepatic encephalopathy???
Any Hepatologist will do this during a routine exam. Hold your hands out in front of you with palms facing forward as though you are stopping traffic. Can you do that?
If you have hepatic encephalopathy your will NOT be able to do this!!! Your hands will "flap" around uncontrolably due to a tremor you will have.
I assume you typed your posting? Did it take you hours or days to type? If you have encephalopathy you will lose your fine motor skills and it will be very difficult to type.
If you still want to read on....
First: Find out if you have HCV RNA.
CHILL...
Second: a. If no, you don't have Hep C. BE HAPPY.
Second: b. If yes. Get a biopsy to find out if you have any liver damage (It took me 38 years to develop Stage 4, compensated cirrhosis. And I still feel fine. Most people with stage 4 don't even know they have liver disease.
CHILL...
Third: Do you even need to treat now? Or can you wait for newer more effective and tolerable treatments that you could tolerate with your other medical conditions?
CHILL
"nobody listened to me for years when i asked what is wrong with my liver" Years? Did you ever ask for liver blood tests (ALT, AST, Platelet count?) or a biopsy during those years. You could have gotten your answer then.
What make you think there is something "wrong" with your liver? When you really have something "wrong" with your liver it appears as a symptom of the underlying liver disease. Hepatic encephalopathy is only one symptom of advanced liver disease. Do you know when people experience hepatic encephalopathy? When they have "End Stage Liver Disease". Their liver is unable to function any longer. Soon they will need a liver transplant to continue living. If they don't get another liver they will die. If you should be unlucky enough to have ESLD you will have a lot more serious problems than insomnia, fatigue, brain fog.
In addition to hepatic encephalopathy if you have ESLD you will also be experiencing the following symptoms...
A swollen belly so you look about 10 months pregnant?
Do you get life threatening infections needing hospitalization.
Are you ankles and legs swollen?
Have you ever vomited blood?
Are your eyes and skin yellow?
Do you have red spots all over your body?
Etc. etc. If you really want to find out more just Google ESLD for all the gory details. And be glad you are not one of these unfortunate people.
You may want to read up on Depression, as many of the symptoms you speak of are the classic signs of a major clinical depression. Feeling miserable, insomnia, physical ailments with unknow cause, fatigue, brain fog, and "lying in bed because i was too weak to want to get up at all", "allergic to everything i take".
Best of luck to you.
Hector
Now
Let's cut to the chase...
Want to find out if you have hepatic encephalopathy???
Any Hepatologist will do this during a routine exam. Hold your hands out in front of you with palms facing forward as though you are stopping traffic. Can you do that?
If you have hepatic encephalopathy your will NOT be able to do this!!! Your hands will "flap" around uncontrolably due to a tremor you will have.
I assume you typed your posting? Did it take you hours or days to type? If you have encephalopathy you will lose your fine motor skills and it will be very difficult to type.
If you still want to read on....
First: Find out if you have HCV RNA.
CHILL...
Second: a. If no, you don't have Hep C. BE HAPPY.
Second: b. If yes. Get a biopsy to find out if you have any liver damage (It took me 38 years to develop Stage 4, compensated cirrhosis. And I still feel fine. Most people with stage 4 don't even know they have liver disease.
CHILL...
Third: Do you even need to treat now? Or can you wait for newer more effective and tolerable treatments that you could tolerate with your other medical conditions?
CHILL
"nobody listened to me for years when i asked what is wrong with my liver" Years? Did you ever ask for liver blood tests (ALT, AST, Platelet count?) or a biopsy during those years. You could have gotten your answer then.
What make you think there is something "wrong" with your liver? When you really have something "wrong" with your liver it appears as a symptom of the underlying liver disease. Hepatic encephalopathy is only one symptom of advanced liver disease. Do you know when people experience hepatic encephalopathy? When they have "End Stage Liver Disease". Their liver is unable to function any longer. Soon they will need a liver transplant to continue living. If they don't get another liver they will die. If you should be unlucky enough to have ESLD you will have a lot more serious problems than insomnia, fatigue, brain fog.
In addition to hepatic encephalopathy if you have ESLD you will also be experiencing the following symptoms...
A swollen belly so you look about 10 months pregnant?
Do you get life threatening infections needing hospitalization.
Are you ankles and legs swollen?
Have you ever vomited blood?
Are your eyes and skin yellow?
Do you have red spots all over your body?
Etc. etc. If you really want to find out more just Google ESLD for all the gory details. And be glad you are not one of these unfortunate people.
You may want to read up on Depression, as many of the symptoms you speak of are the classic signs of a major clinical depression. Feeling miserable, insomnia, physical ailments with unknow cause, fatigue, brain fog, and "lying in bed because i was too weak to want to get up at all", "allergic to everything i take".
Best of luck to you.
Hector
sorry to hear about your diagnosis...you will spin out for a while, that's normal.
Ammonia can be reduced over the weekend by cutting protein from the diet, and by getting Inulin available at most health food stores.
as soon as you see your doctor I would ask to be given Lactulose immediately, and to have an ammonia level draw. You may need more than Lactulose, there are some other drugs used when needed, but your test results will determine whether you need all that.
the other thing is to eat a high fiber diet...to ensure 3 Bm's a day. A steadily moving bowel is essential. Read up on probotics and prebotics..do a search in here or elsewhere for that.
Making sure you get enough calcium and essential lipids can slow down the severity of seizures. Look into PPC, known to help slow liver fibrosis and other Omega fats Known to aide in nerve transmission and protection of the myelin sheath. Having enough calcium prevents brain cells from overfiring and calms nerve tissue so avoid colas, caffienated beverages and alcohol all of which strip calcium from blood and tissue.
as far a seizures, I had them from the tramadol they had me on for a spinal cord injury....but also have brain plauques caused by the HCV or the seizures or who knows what else. There isn't much they can do unless they can determine for certain what is causing them. The only way to determine cause of seizures is by the process of elimination (if it is drug induced) or by extensive workups/MRI/etc. Go to a highly qualified neurologist for answers to this.
Ammonia can be reduced over the weekend by cutting protein from the diet, and by getting Inulin available at most health food stores.
as soon as you see your doctor I would ask to be given Lactulose immediately, and to have an ammonia level draw. You may need more than Lactulose, there are some other drugs used when needed, but your test results will determine whether you need all that.
the other thing is to eat a high fiber diet...to ensure 3 Bm's a day. A steadily moving bowel is essential. Read up on probotics and prebotics..do a search in here or elsewhere for that.
Making sure you get enough calcium and essential lipids can slow down the severity of seizures. Look into PPC, known to help slow liver fibrosis and other Omega fats Known to aide in nerve transmission and protection of the myelin sheath. Having enough calcium prevents brain cells from overfiring and calms nerve tissue so avoid colas, caffienated beverages and alcohol all of which strip calcium from blood and tissue.
as far a seizures, I had them from the tramadol they had me on for a spinal cord injury....but also have brain plauques caused by the HCV or the seizures or who knows what else. There isn't much they can do unless they can determine for certain what is causing them. The only way to determine cause of seizures is by the process of elimination (if it is drug induced) or by extensive workups/MRI/etc. Go to a highly qualified neurologist for answers to this.
Say your mantras and practice letting go while still using your head,,,, Ha! You have support here and keep us posted and keep posting.... XXX OOOO M4now
all good advice, thanks. i guess my main concern is that i'm pretty sure i won't be willing or able to do treatment, especially since i already have so many hair-trigger health problems. but i believe that there are alternatives to The Treatment (at least for early cases), and i will not give up seeking those. i do indeed need to get serious about my path (meditation etc)... you are fortunate your liver's not too bad, so i can see you waiting. most of my threats to liver health have probably been from really bad adverse drug reactions. i've lived so cautiously since my seizures started 8 years ago that i can only hope it prevented worse damage. we'll see... i'm gonna try to relax and get to sleep now. if i can throw myself into utter frivolity all week, that'd be great. :)
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.
