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505363 tn?1211210560

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.
29 Responses
148588 tn?1465782409
Welcome. Just a thought off the top of my head: your posting seems way too lucid for someone with encephalopathy. Slow down, take some deep breaths, and do some reading in the archives of this site on some of your topics of concern. This is a slow progressing disease and it's doubtful anything is going to change between now and when you get your results back. Love your chosen name, by the way.
Avatar universal
welcome, try and relax. don't forget that there is still a chance you only have the antibodies and your body has fought off the virus. If not that lucky then this forum is the right place for information and support. good luck on the test results.
505363 tn?1211210560
thanks! i do need to relax, or i'll just make myself worse. and i'm glad you like the name, though i think maybe i should have called myself "dharmaslacker". :P
505363 tn?1211210560
thank you. and yes, the doctor did say that the results don't necessarily mean anything. i just wish i didn't have so many long-term symptoms to go with the test results.
374652 tn?1494815035
dharmaqueen,
Please don't worry, first of all it doesn't help anything, that is a huge lesson to learn takes a lifetime, so get started.  I worrried like a banchi at first
Second when I was diagnosed as you with hep c antibodies its like my whole life flashed in front of me, then when I finally got to see the gastro provider skilled in hep c and she said right off the bat, this is not a death sentence.  There are treatments and there are new treatments in the works, not sure how quickly they will be available, but there are trials to get in with...... Foremost you have to get all the information to determine your gentotype important for treating, and a biopsy of the liver (very easy for most people, the biopsy itself takes minutes, its the prep and after that takes time)  also your blood tests to check all your blood levels, all those components will give you a better idea whats going on.  You may not even have the virus, you may only have the antibodies, its possible so calm yourself down.  Most people die with the virus not from it.  Once you get your vital information then you can figure the best course.  I am waiting for a little bit because I am genotype 1 (harder and longer to treat) and my liver damage is minimal right now grade 1 stage 1, and my life circumstances are not ripe for me to treat.  I hope I know when that will be and I hope its before I get more damage.  I think I've had the virus for 30+ yrs. but theres no way for me to be absolutely sure.. I will be monitoring the effects of the virus as best I can.... blood tests in another month...
practice the dharma for the time being and probably good to do from now on...
Blessing, best wishes for a good outcome... M4now
505363 tn?1211210560
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. :)
374652 tn?1494815035
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
233616 tn?1312790796
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.
446474 tn?1446351282
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

Avatar universal
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
179856 tn?1333550962
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!
Avatar universal
here is another website to check out for more information, just add dots in front of com & htm. for some odd reason this site will not allow someone to post "helpful" websites so i hope this works by removing the dots.

janis7hepccom/indexhtm
505363 tn?1211210560
thanks everyone for the support.

Mary4now: thank you :)

merryBe: yes i'd been prepared to ask for the Lactulose, but today the GP told me all my liver function tests were normal (i saw the numbers for myself). and i usually eat a high fiber breakfast and also try to get in some fresh vegetables and fruits. plus lately to detox, i've been drinking beet/carrot/cucumber juices and a lot of water. probiotics make me nervous so i need to work on that one or just get some good yogurt. PPC i'd also read about - sounds good and something i'd like to try. Omega fatty acids i've had reactions to in the past so i avoid taking them and go for diet. they make me feel like having a seizure usually if in supplement form. calcium i'm careful about in supplement form, too, as the carbonate can neutralize needed stomach acid and i got very ill once while on a "health food" diet but taking calcium carbonate to replace the milk i removed from my diet. and i avoid caffeine because i get allergic reactions. don't drink a drop anymore, but i never drank much at all (maybe a quarter to a half a drink twice a year since seizures started). and the seizures, i already know why i get them. they are from a concussion plus an adverse reaction to an antibiotic. but they stuck with me and i live with it now. neurologists won't admit i have seizures (not like i care - i know i do and i get biofeedback for them and no drugs), though an astute GP diagnosed me as soon as i described them to her, early on; and ER's started eventually admitting i was having them. the last neuro i saw ordered an MRI with contrast dye which has since turned out can cause kidney failure in some; anyhow, i reacted with almost a seizure, a flushing reaction, many other symptoms (some of the skin changes which remained), including permanent rosacea. so, it's all very complicated. hence my fear at any condition which might require Western medical care. but thanks for the ideas. i will still keep trying, mostly right now through diet.

HectorSF: according to your detailed description, i don't think i had hepatic encephalopathy. however, i'm not going to a hepatologist unless i actually have this virus. but yes, i had no tremor and i typed fine. as far as you saying i could've found out about my liver easily... well, usually when i'm in the doctor's office i'm not feeling well, which sometimes means recovering from a seizure or feeling like having seizures - so i don't know always (though i do sometimes know) what to ask for. and doctors don't usually ever admit anything's wrong with me anyhow, so i doubt it'd go over well to ask them to do this or that test (though sometimes like lately, they do indeed do the tests). and yes, i had a puffy area over my liver on my abdomen for 4 years. i asked an internist and possibly mentioned it to others. i guess it's hard to press doctors on things like that while they are busy neglecting me in other matters. :) another thing i have thought was a symptom was my not being able to process any drug or supplement i take. i mean i even react to vitamin C and vitamin B. tylenol and aspirin too. some of that can be attributed to my past concussion, though.

anyhow, my recent what-i-though-were-hepatic-encephalopathy-symptoms could probably be due to lack of sleep. and as far as the swollen belly, i didn't look 10 months pregnant, but in 2001 i did look pregnant - that's how swollen my belly was. but i'm so thin that the doctors all brushed it off. i went to doctor after doctor and it turned out i needed ovarian surgery after they neglected me and refused tests for about 3 to 5 months. after surgery i still had a swollen belly even after recovery, but after changing my diet a few years later it amazingly went down. so now if i avoid white carbs and other inflammatory foods, it pretty  much stays as flat as it naturally is. and yellow - this week i was yellow. that was one of my symptoms over the weekend that i ended up noticing. i was yellow under my eyes and had a general yellowish tone to my face which is slowly disappearing. granted, i've been doing detox juices, lots of water, watching the animal protein intake, and eating asparagus and other such veggies. and yes i'm developing more and more red spots on my body. maybe 3 or 4, but the rheumatologist was interested them when he decided to order the Hep and lupus and other tests.

and, finally, major depression. debatable. yes i'm a depressive. however, i know there are things physically wrong with me. my depression used to be a copout for doctors to not admit the physical things that were going on with me. i've had unexplained joint swelling in hands and feet for a year and a half, which is suddenly getting worse. so it was a bit upsetting that no doctor could give me a real answer. plus it took me all that time to get diagnosed with Raynaud's disease. it's not been fun, and i attribute a lot of my depression to medical neglect. i'm very lucky that now i've found a few doctors who don't insult me and ignore my concerns. and when i found out i tested positive for Hep C it was quite scary seeing as i'm a single mom with very little support, no reliable doctors, and an incredibly sensitive body that would probably not tolerate the treatment. oh, and the fatigue - i had had insomnia (one of the symptoms of hepatic enceph, i read)... that makes me feel close to seizures too. and when i was too weak to get up, it was because i had waited too many hours to eat. when my seizure threshold is that low and my blood sugar drops like that, i will get weak. maybe i didn't realize how weak i was from lack of sleep or something. i'm just saying it's a lot more complicated than it may seem.

but thank you for the support. i was just explaining some of where i'm coming from and why i was so upset, and the easy trap of thinking i'm just depressed.  

jmjm530: thanks. yes i'm waiting for HCV titer results before i go to the hepatologist, as i was recommended by the original doc who ordered the antibody test.

nygirl7: what's a Lostie? and as far as the "cure", i read the Interferon is contraindicated in epileptics. i didn't triple-check the info, but i'm betting it was correct. so many things give me seizures anyhow that i highly doubt i could do any serious treatment like that. i ended up hospitalized over Zithromax last year that i took for Strep throat, even. that was after 2 other antibiotic reactions, too. and yes, i'd have to do the biopsy. :/ and you saying how little the GP's know makes me wonder if i should trust my doctor's offhand assessment today. my liver function tests were all normal. he said i was perfectly healthy and that "it can't be much of an active infection with those lab values". was he right? and as far as specialists, i've been misdiagnosed and undiagnosed and harmed by those, too. so i don't trust them much more than GP's, though i do seek them out if i feel i need to. thanks for the tips.

copyman: thanks for the site. i'll have to check it out.

all: so now that i've answered your kind posts, i just wanted to say that my liver function tests today were normal. i'm afraid to get excited though, after reading some of your posts here about how little GP's know. i mean, the doctor did ask me if i'm getting counseling after showing me my beautiful liver function numbers. i would've been insulted if he weren't such a kind, funny, respectful doctor. i don't even get doctors talking to me like i'm psychosomatic much anymore. in any case, i cried for joy, came home, called my family to tell them i'm probably not sick, and felt like i have a new lease on life. however, i'm holding off on being 100% relieved until i know for sure. but how bad can it be if my numbers are normal?
505363 tn?1211210560
i forgot to say - i've been getting pretty complete general labwork done (including those liver tests you mentioned) for about 4 years of the last 6. all came back normal. so i seemed fine, but i knew i had medication-metabolizing problems and a puffy right abdomen. plus i had laypeople and alt med people telling me my liver must not be working well. by the way, some of the alt med know what they are talking about. one of them diagnosed my vitamin D deficiency without any tests over a year ago. i was just formally diagnosed with that one recently, too. i forgot to mention that. the nurse also told me when i start on the vitamin D regimen, it should help my fatigue. so that's one more factor for the fatigue.

[by the way, the caveat there is that he prescribed 50,000 IU once a week for 12 weeks. well, i asked him and his nurse, and the pharmacist if this was safe especially considering my medication/supplement difficulties and possible liver disease. they assured me it was, but i later read that people with liver disease should not take more than 2,000 IU at one time, just as i suspected. i haven't triple-checked that information, but it makes sense to me and i'm not taking any of that until i get my test results back. plus there are side effects on the paper, which my rheumatologist had denied. it's just frustrating that i have to second-guess the doctors so much.]
315996 tn?1429057829
Oh god, not another yaker. yak yak yak

Get well soon!

233616 tn?1312790796
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.

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.

Yes gandolinum can be toxic, normally if your kidney function is good it is still considered safe, but who knows what drug/drugs can trigger a cascading shutdown...
I mean come on, if we all know a high protein meal can make stage 3 and 4 sick...tell me which drugs are really safe.

My choice was to order MRI's without contrast...a little harder to read...yes...the radiologist has to work a little harder at seeing whats there....but if the goal is to get through what all agree is a highly toxic treatment regime, (and remembering every chemical we add to the equation has a risk/benifit ratio), then let the radiologist work harder for his money and spare our organs...amen.
505363 tn?1211210560
"Oh god, not another yaker. yak yak yak"

that was kind of mean and uncalled for. i was merely responding to people's posts.
505363 tn?1211210560
"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. :)
96938 tn?1189803458
From positive antibodies to end stage liver disease in 20 comments.  That faster progression than a double-lane drive-thru at a McDonalds.
505363 tn?1211210560
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.)
505363 tn?1211210560
lol
96938 tn?1189803458
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.
315996 tn?1429057829
"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.
Avatar universal
With all the problems you currently have you may be hard pressed to find a doctor that will treat if you have the active virus.  I say this because most doctors will not treat if the patient is exhibiting signs of depression or intense anxiety.  I think you are in denial that you have those symptoms.  By reading your posts you are extremely anxious about all of your medical problems which is understandable but you have to be careful not to let if become the focal point of your life.
Trinity  
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