Hep C Discussion Forum

Trainhopper · Senior Member

RE: Ammonia Level of 197 ug.

Huey · Guru

I can not say i understand your doctors, I don't understand why the Doc's I have do some of the things they do but I can usually predict it. at first when i was looking for doctors, Doctors i never needed before because i was a sufficient self doctor and could treat most things myself with Homoeopathic meds. , Therefore I had no history, and until I had a history, '''many blood test and months apart'''' I was assumed to have some sort of underlying social problem that needed to be emanated before any treatment was to be administered, "at least that is how it felt'. Then they finally tested for the hep-c I told them I had....

That is what they are doing to you , it seems to me, stalling.

I hope this is helpful, one of the ways to keep your stick on the ice is just to hold on!

-- Edited by Huey on Wednesday 22nd of October 2014 02:19:02 AM

Trainhopper · Senior Member

Yeah Huey, it was a cry for help.... I am at such a loss when 4 doctors tell me it's impossible for me to have H.E. but all the symptoms point to that... So yeah disheartening to say the least. But living here in Missouri, should be a key indicator that 1) It sucks here 2) the Doctors here are weird. I say they are weird because, well just look at all my last statements I've written over the last few weeks... Takes a lot to not call them stupid

Huey · Guru

Great to hear form ya. I was worried last post I read from you sounded like a cry for help to me. But the sun came up and your back in the sunshine. If you ever need to talk, we are there for ya,.AND

keep your stick on the ice.

Trainhopper · Senior Member

Hey Duane... Thanx man, you are so supportive as well. The herbs thing.... Eh could be better. Moving in with my sister presented certain.... challenges (we'll say), and it wasn't because it was around... more to put up with losing control of my life. Not having my own place anymore, not hoping trains, not doing a lot of things. But lets say I have cut my usage in half the last 30 days and call that good. Cigarettes... been a challenge but I've cut that in half as well. The only guilty pleasure I KNOW I shouldn't be doing is the salmon steaks... I have been eating like 18 oz a week for a little bit. But this is only after no difference in 3 weeks on a vegan diet, as far as my symptoms go. Still massive amounts of veg. But yeah Duane, I love laughter... Just to show you... (cause I like a good true story) I was climbing a mountain in Colorado... A 14ner (14000 foot) anyway, I broke my ankle BAD... Its was in three places. My buddy insisted I hang out and wait while he went and got help..... Me being the "tough guy" that I was said F-that lets both go down together.... I blazed a joint that we had for the summit, for the pain (worst mistake I ever made climbing/hiking) well, on my way down I fell.....HARD I fell like a tree 20 some odd foot. It knocked me clean out with a hairline fracture to my dome, a broken arm, and the worst part.... a concussion that had me throwing up for a week. So, When I came to my buddy was so happy... he told me to just stay still and he'd be back a.s.a.p. so..... After who knows how long I heard people coming... I tried yelling... anyway it was Colorado Mountain Rescue... I was so upset that the bad asses had come for me.... Anyway, this really hot emt/climber chick hit me with stuff.... I got drowsy... woke up in an a hospital in Denver... I stopped the Dr. during his Dx. to admittedly being pissed about not being awake for the Helicopter ride.... lol So... Yeah Duane I love humor. I hope when I see St. Peter I can buy my way in with a joke

Dzdayscomin · Senior Member

ROBIN, Good to hear you are still working all the good things in your life and keeping a positive .....humorous attitude...this will go a long long way in helping you overcome your health issues, are you still staying off the weed? Last we spoke you had cut way way back which is great to keeping the un-needed chems out of ur system.

You sound very up beat and I'm a little dissapointed you can only do 100 push ups ....lol just kidding ,thats amazing I try and do 10 of each sit ups and push ups and i get so cramped I can't even stand up or my hands will claw up like a stroke victim.

This is really great news and I'm so h appy with how you have really taken control of your health situation to get better at all costs within your ability.You are an inspiration to mn any with your determination, so great job keep it up you won't be sorry you did!

Duane

Trainhopper · Senior Member

LOL I am far from scary fit Tig, but thank you. thats not at 1 time thats over the course of 2 hours I'm slow, 25 push-ups 50-sit-ups 10 pull-ups if I change it up and do chin-ups I'll get 6 maybe. but I need to do it for my energy levels. without it I'm gonna crumble.... Pop on some tunes.... do some stuff. Keeps my mind semi-free of the nasties that tend to run rampant. But I heard/read that too much with build up crazy amounts of Lactic Acid in your muscles. For a person working out all the time it's a great thing to have going on... But being in my (whatever health) state with the muscle cramps and soreness that's already going on.... NO WAY not gonna do more... and that's also bi-weekly not every day well, maybe 3 times a week. Like I said I'd do more but.... Anyway, with that lvl of workout and basically either starving or feeding myself has no effect on my symptoms. And there in lays the frustrating part... I have since decided that I will eat the best I can without guilt. I ran my labs by the nurse (which ever she asked for, not the whole damn thing), She did say that my glucose was good my sodium was outstanding, and yeah with my numbers I would appear (on paper) to be quite healthy. so keep on keeping on, she said. I have high hoopes for this visit... smile

Groupergetter · Guru

Dern Robin, I could probably do 10 pushups, 10 sit-ups and 30 seconds on a bag. Then fall out. I'm in a not-so-good routine at the present. Don't have a great deal of energy. This is something I really need to try and do better at. Glad you found a new doc. The handbooks, fee schedules, and covered services for Medicaid in your state are available online. Hope you get feeling better.

Tig · Admin

Dude, you sound like you're scary physically fit, lol! I'm more than impressed with your strength and workout routine, "daaaaamn"!!! Eat healthy, and keep up that routine. It helps immensely to stay in shape and I have to believe that your new healthcare team is going to get you on track soon. That's what you need and I have to believe once you get the help that has been missing from your healthcare corner, you're going to start feeling better mentally and physically. Stay with it Robin, we're in this with you and we like to win! Count on it!

Tig

Trainhopper · Senior Member

Thanx Tig... You're very supportive. I asked my sister (dumb mistake cause all she did was poke fun bout how I've never been right in the head) But after the b.s. she said that I appear healthy as hell. She mentioned my exercise regiment. Which consists of 100 push-ups, 35 pull ups, bout 100 sit ups and the heavy bag for 30 minutes (the heavy bag not so much with the head aches). But yeah says I look and act fine. My eyes/skin/nails show no jaundice, And outside of the Hepatic symptoms I feel great. But the H.E. Symptoms are debilitating to say the least...

The new Dr. is ready for me. It was her nurse that talked with me at length. She said that they dont have many people in the office there, and I would be one of about 25-30 which puts me at ease because the whole number thing....

Tig · Admin

Hi Robin,

I'm glad you have finally got someone to listen and have a new appointment set up for next week. That has to be a little more promising! Also good to see your nurse agree that you are needing another opinion. Nurses are very sharp people and can be very helpful when there is an obvious need for assistance. I would definitely keep that nurse's number close!

Regarding the HE, I'm going to ask one of our members with more experience, to reply. It would seem to me that as the patient, you might be able to determine your own problems developing, but I don't know. Certainly once those symptoms are well developed, you may not be as quick to understand a developing problem. Do those you are spending time with notice any changes? I'm anxious for you to see the Hepatologist and get some new diagnostics started.

I like your attitude Robin, you have some obvious strengths and right now you need to hold onto them and not give up or give in. Look forward to your next appointment and take each day as it comes. You've made progress since we last talked, be proud of every accomplishment! One foot after another....

Tig

Trainhopper · Senior Member

UPDATE: I found a new Dr. to see. I have an appointment this thur. Talking with the nurse for almost 2 hours over the phone. (single dr. office not a huge outfit) she came to the conclusion that yes in fact I need a 4th or 5th or whatever opinion. It was hard finding a private Hepatoligist ( i know I spelled it wrong) that takes medicaid. And another hurdle was getting medicaid to agree to yet another specialist with all the same Dx. from the quacks I have now. Needless to say, changing my diet has done nothing for my Hepatic Ence. or the symptoms there of. it's so frustrating... I haven't had a new lab done this week. My p.c.p. gets back from holiday this up coming week. and I will almost demand another ammonia lvl. My levels (feels to me. I'm not sure because I don't have labs) is getting higher. I'm not feeling confused, but if I was, would I know it? But I have most other symptoms like we've discussed before.... Also like I said before if I draw my knees up to my chest it exacerbates (spelling?) my symptoms, also the dull pain in my mid to lower stomach has become quite acute and at times crippling. Any thoughts? (I know we've been here before people, (lol) so again any and all info is helpful)

Trainhopper · Senior Member

Thanx Brah! I used to go to this thing called Rainbow... it's a national gathering of hippies and like minded people. Like 50k in the woods yadda yadda. But going there for me was half the fun as getting there. When, I climbed Mt. Mc Kinley, getting to the top was half the battle and fun. So needless to say I'm mentally prepared for anything these quacks have for me. Just the physical part is draining me, the headaches the muscle aches, just sucks man... lol but My birthday is Nov, 15th and my biopsy is the 5th.... I think I'll get a just deserved present

-- Edited by Trainhopper on Wednesday 15th of October 2014 07:24:39 AM

Tig · Admin

I'm sorry you've got such a limited number of options in your location Robin. I think and hope that the outcome of your biopsy will turn some corners for you and get you the attention you're missing right now. Don't give up on your desire for answers. You've got to be your best advocate and do that by continuing to fight and ask questions of your healthcare providers. Is there any possibility of a referral to the nearest large medical center or a board certified Hepatologist? Do your best to stay positive and keep moving forward. You have the desire, that's obvious. Don't give up trying, because you will get the answer, maybe not tomorrow but the day or week after that. If the ride gets bumpy Brother, buckle up and hold on, you'll get there, ruts and bumps be damned....

Tig

Trainhopper · Senior Member

I'm trying to be optimistic, the er... That's laughable because I live in such a small town that there's only one er in 50 mile radius and they're the ones who initially Dx the hepatic encephalopathy. The biopsy is scheduled for nov 5th. My pcp is leaning towards that my fibroscan is false. And my low enzyme level is due to the milk thistle. And has told me that if it is indeed my liver doing the ammonia thing. Then I better buckle up. Cause its gonna be a bumpy ride....

Tig · Admin

Hey Robin,

Sorry to hear your levels are still elevated. Can you tell us what they're telling you and the current course of treatment? What about that biopsy? Have you considered a trip into the ER to address the ammonia issue alone? Might be worth a second and third opinion. It's unfortunate that you might have to resort to that just for an opinion, but it's obvious that you're concerned. You need an answer and I'd keep at it until you get an answer that you're happy with! Tell your nurse that you're considering that and get her response. Huey is right, we're together on this and are here anytime you want to talk. Hang in there buddy!

Tig

Huey · Guru

Keep your stick on the ice man, You are going to beat this,

Remember , We are all in this togeather!!

Trainhopper · Senior Member

so, since they started the lactulose again it hasn't improved my ammonia level. The test done yesterday yielded a 207/ug ammonia level. Even with diet and yadda yadda.... It would seem I may be on the way out

Trainhopper · Senior Member

also the rapid weight gain and loss is worrying them? they seemed a bit concerned bout 16 pounds gained in a week to ten days

Trainhopper · Senior Member

yeah my G.I. nurse said in her experience it does promote liver function, but has been known to cause false readings of the labs... To me, I have no comment because I have no clue, but as far as, getting some answers.... I did get a few.....

Huey · Guru

Milk Thistle is not recommended by me or Doctors. During Treatment or right after. Before Treatment , I used it for a wile.

Trainhopper · Senior Member

so I talked to my g.i. nurse and she gave me some good info. My doc put me back on lactulose... this times 120 ml daily so 60ml x's2. the nurse and doc firmly believe the fibroscan and labs..... Even tho they both admit that milk thistle (took it up until a week ago) provides false labs on liver stuffs. They said that worst case is my liver is too far degenerated to produce enzymes, and some other nasty sh*t I dont wanna think about... but they said best case is its like Isis said metabolic or some such, so they are moving rapidly for a biopsy also the nurse said the other pill that Grouper recommended is 500 a bottle and medicaid wont cover it.... bleh

-- Edited by Trainhopper on Friday 10th of October 2014 01:29:32 AM

Tig · Admin

Thanks Huey!! A good ol dump in other words... I see clearly now, ha, ha!!!

Tig

Huey · Guru

ROTFL FIBER one B. sorry.

Tig · Admin

Huey wrote:
lots of Fibber will help you, treatment or not, fibber is the best aid for high Ammonia we have for ourselves,

Huey,

What in the world is Fibber? The best I can find via Google is its either someone that lies, a gun used in a game Or McGee's first name. Do tell, you've got my curiousity peaked now!

Tig

Isiscat2011 · Guru

So frustrating, Robin. Makes you want to just lock a group of doctors in a room and not let them leave until they have given you a proper dx and tx plan and explained what is happening until you are satisfied! Sadly, that would only get you arrested.

It isn't necessarily liver related. Could be kidneys or metabolic or something else. If you can't be seen by the GI doc soon enough, and you are not feeling well, perhaps going to the ER would be the best solution. The purpose of the ER isn't to diagnose ongoing conditions, so they may not be of much help, assuming your condition is stable. OTOH, they will run some tests and you will get some new medically trained eyes to look at this. Or maybe they can expedite getting you in to see a specialist sooner. The medical system can be a maze and navigating through it is often half of the problem. Hang in there!

Huey · Guru

lots of Fiber will help you, treatment or not, fiber is the best aid for high Ammonia we have for ourselves,

-- Edited by Huey on Friday 10th of October 2014 12:30:27 AM

Groupergetter · Guru

Sorry you're having to deal with this. You shouldn't have to "present a case". If the lactulose isn't working they should prescribe rifaximin. Hope this works out for you.

Tig · Admin

Hey Robin,

This may seem like a stretch but you're obviously not getting any help from your current team. Have you considered walking into an ER and telling them you're having severe "problems" with confusion, blah, blah, blah and getting another opinion and course of action started? They will certainly draw new labs of their own and since they are obviously elevated, you're going to get some second opinions. You're right that you shouldn't have to do this but you need to get some satisfaction too.

Tig

Trainhopper · Senior Member

To be honest grouper.... it's sad that I should even have to do this. I have been doctoring myself since this whole hepatic ence. diagnosis in may. I have a call into my G.I. in hopes they will tell my doctor to prescribe it. Just sucks.... I hate feeling like this and it would seem that they laugh when I present me case and common treatments found. I.E. when first Dx. in May I asked my pcp (love that acronym) why only lactulose, when there was other stuffs for it, she refered me to a clinic that insists im fine and it's not liver related, hell dude, they didnt even do an ammonia test and still haven't knowing that a doc Dx H.E. on me with an ammonia lvl of 57. now its 197? see to me it's a no brainer, high ammonia, give meds. not this high ammonia, take him off the meds, lets see what happens (because this is exactly how I feel) evileye

-- Edited by Trainhopper on Thursday 9th of October 2014 04:38:41 PM

Groupergetter · Guru

Reduce your protein intake. Surprised they didn't prescribe the rifaximin. This is used to bring ammonia levels down quickly. I've been there. I would call the doc's.

Trainhopper · Senior Member

they did in fact put me back on lactulose at the same prescrip. 30ml x's2 daily, I asked for it to be higher to help me bring it down faster and they said I was at the max lvl, as for the other pill (or whatever it is that you said) they told me they weren't G.I.'s and to follow up with them.... this vicious cycle is going to kill me (lol), not that it's funny.... just sayin

Groupergetter · Guru

If ammonia is high they should have put you back on lactulose or prescribed rifaximin.

Trainhopper · Senior Member

also I have put on 16 pounds in 10 days.... not sure if thats good or bad

Trainhopper · Senior Member

So... In my endless search to feel better, I was just at my Doctors. She stopped lactulose 30ml. x's2 daily, like 10 days ago. More labs were done friday. My ammonia lvl is higher then it's ever been, and on top of it all my doctor told me I needed to follow up with my G.I. Well my G.I. is keeping me on the back burnner, as far as " everything looks great, see you in 3 months" that's what I get every time I am there. I have my "team of nurses" trying to find a new Digestive health place for me. So.... my whole "Robin's Rant" of today is.... how to get my ammonia lvl down FAST!!? and what else should I ask my Doc for (because they don't seem to know) to help bring my ammonia down? The labs read like before. only things elevated besides my ammonia lvl is billiruben (spelling?) lymphocytes, same as before my liver function seems fine.... I am at my wits end.... They wont give me a colonoscopy (not needed they say) they seem to think my liver is fine..... I'm not even sure why I am writing this.... I guess it's more to vent then anything, but if anyone has any tid bits to add, be my guest....

-- Edited by Trainhopper on Thursday 9th of October 2014 03:44:10 PM

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