He did a very thorough exam, etc and took a bunch of info, looked over test results, etc. He said he can never have too much info.
I really like this doc.
He was fairly unconcerned with the liver and LFTs as they are coming down nicely and I will have another liver profile pulled tomorrow afternoon. He doesn't feel the HepC is much of a player in this. He will decide based on where the liver functions are when I would be able to resume treatment.
The scan and new liver profile should give us the rest of the picture of what's going on. Yay!
I asked about meds that may be more liver toxic than others and he invited me to call with any med I want to take, leave a message with name and dosage, and he will gladly check them out for me.
I can't remember what else.
I am feeling better than I was and feel much better about someone actually doing something, finally.
I also mentioned I felt pretty lousy overall and he said "Well, that's to be expected with all you have going on." He did not poo-poo TBDs and understood the difficult of getting someone to treat them.
I may take Advil or Alleve if necessary. As long as I steer clear of Tylenol(which I never take because it's too liver toxic, for me, anyway).
Ok, sorry so long but more importantly... Thank you all for all your input, help, support and love.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
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So, how is the rest of the club?
A read Cactus' update. TXC, you're going with me in the morning, right? Jif? Who am I fogettting? Seems there're more.
I hope everyone is/will be getting some answers and relief, soon.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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trails
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posted
oh this is some perty good news! hooray for MOVEMENT!
I am so glad you feel confident in your doc! That makes a world of difference in your healing IMO.
Glad you are feeling better too!
thanks for the update, keep taking good care ofyourself, trails
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trueblue
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Thanks Toots and Trails!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Jill E.
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I am so glad you have a doctor who has a plan, who believes you and is understanding!
A Lyme pal and I both had hepatologists in our city that used scare tactics - the last thing we need given we already have enough on our plates.
I wish I were in your city to have a hepatologist who knows when to relax about issues that aren't the top priority!
Please keep us posted.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Aniek
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Great news! Isn't it great finding a doc who is willing to find an answer and support your TBD diagnosis?
I just read on my box of ginger tea a warning not to take ginger if you have gallstones. Thought I'd share since you mentioned gallbladder.
I've had the scan you are getting (also called a HIDA scan). It's pretty darn simple. You lie down on a very thin board while this thing turns and takes pictures of your gallbladder.
It's long and boring, and they do put something in you through an IV to see how your gallbladder processes it. Last time I got one, I fell asleep.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
"Hey Guys", Speaking about liver/gallbladder,I had a ultrasound done on my abdomen last week. Results were a enlarged Fatty Liver with inflamed intestines/Gallbladder. Going for a HIDDA scan on thurs. I've heard of us Lymies having Gallbladder problems but was wondering about Liver problems ???????? Any input would be appreciated. Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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posted
Hey True, You sound MUCH better than you have in a while. Wow, the power of a doctor who takes his role and patients seriously. He sounds like a gem. Is by any chance cute and single . He's too far anyway.
You may still consider the Hep C protocal that I sent you. It targets viruses in general and liver toxcitiy, not a bad thing to get under control.
I'm still packing and growing weary of it
still sending you hugs Posts: 628 | From the south | Registered: Dec 2005
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I live in a small town (we don't even have a "real" grocery store, just convenience stores) so I don't get much of a choice, doctor-wise.
But yes, I am going into another town tomorrow morning for my HIDA scan, at about the same time as you! I will cross my fingers that we will finally get some good answers.
Posts: 220 | From central TX | Registered: Jun 2005
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WildCondor
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posted
hey there the Hida/DISIDA CCk scan is not a big deal. You feel momentary cramping when they inject the CCk, and then it goes away. You just lie there on the table...results come pretty quick and will show the % of gallbladder ejection fraction. I had sludging with Rocephin, and the GI docs said I should get my GB out. I decided to wait and sure enough my GB healed itself in a few months, now GB is perfect. Glad you are getting answers! Happy scanning...Nuclear medicine...oooo aaaa...
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cactus
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True, that is so cool - you found a keeper of a doc!
Yay! Progress!
The HIDA scan's not bad, like everyone else said... CCK made me super nauseas - just breathe through it, if it it happens.
I hope tomorrow brings answers and clarity for you, and for TX, too!! I'll be thinking of both of you...
Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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lymeinhell
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Yay!! You're still here AND you had some good news!!!
So maybe the abdomen pain was the gb stones?? Yet another reason to consistently take milk thistle....
Hope all goes well tomorrow.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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trueblue
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Wow, I took a couple of hour nap and you all have been very busy posting.
Thank you so much for the encouragement and advice and good wishes. And everything and then some. It's appreciated more than you can know.
My, I'm a bit overwhelmed, and would like to answer or respond to each sperately but that might take a while.(especially at the rate I type)
Be back shortly... LIH says I need to take my milk thistle.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
hope you get well....
Posts: 983 | From The sky | Registered: Feb 2005
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trueblue
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quote:Originally posted by Somerset: "Hey Guys", Speaking about liver/gallbladder,I had a ultrasound done on my abdomen last week. Results were a enlarged Fatty Liver with inflamed intestines/Gallbladder. Going for a HIDDA scan on thurs. I've heard of us Lymies having Gallbladder problems but was wondering about Liver problems ???????? Any input would be appreciated. Robin
Hi Robin, I know GB problems are common with Lyme but also think they are common in general, it's hard to tell.
As far as liver problems go, I don't know. I had my liver functions go very high (like 900 and 1350) about 8 years ago. I had been treating TBDs on and off for around 5 years and never had a problem before and they've run completely normal until recently and were no where as high as before.
They ran tests to find out why and found low level persistant HepC. We figure I had it 20+ years. As long as the TBDs.
Liver biopsies 6 years apart have shown no change so we are confident the virus isn't eating up my liver. It usually tests out as mildly enlarged. Livers are large and one of the few organs that can regenerate, so that part is good.
I have no idea if this is common. I wonder often if the HepC isn't a co-infection in my case. No way of knowing.
Ok, basically I just wrote a term paper to not answer the question. Sorry.
In any case, good luck with the testing on thursday. And I hope you feel better soon.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
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*trueblue takes a deep breath*
Jill ~ If you ever need another liver doc, and sincerely hoping you never do, maybe we can ship this guy out...
Aniek ~ Thanks for the info on the test and the heads up on the ginger, good to know.
Ser ~ He's not cute and I don;t know about married. I always forget to look for rings.
I have the protocol you sent me saved and will bring it up once this part is taken care of.
Here are some hugs for packing energy. Good luck with the move, unpacking goes faster if that's any consolation.
TXC ~ I will gladly share this doc. And let's get us some answers tomorrow. Good luck! I'll meet you back here.
WC ~ Thank you for the support, all the time, and info on the testing. Great graphic, too!
Cactus ~ Thank you, I'll be thinking of you too. Hang in there!
LIH ~ Milk thistle... check! for that and everything else, especially listening to my whining again and again and...
Other Blue ~ Thank you! How are you doing? and right back at you... I hope you get well... Seems to me we have to be well enough for Mexican food soon, no?
Again, thank you all so much.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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The fatty liver is probably caused by a deficiency of acetylcholine. Bb robs this from us. Hubby had normal liver functions except for elevated GGT which can indicate a fatty liver. IV phosphatidylcholine ( the P.K. protocol)brought his GGT back to normal and it has stayed there for over a year with oral supplements.
Marnie has posted frequently on the acetylcholine issue.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Dear Trueblue & Bea, Thank you for your input. I'll do some research on Hep C & deficiency of acetylcholine. I'm sure this will help me understand what may be happening to me, any other feedback would be greatly appreciated. Peace be with us all, Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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Marnie
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posted
What is the status of your pancreas (enzymes) and adrenal glands (hormone levels)?
Ethanol does a number on many glands and organs.
IMO...an endrocrinologist might be able to shed some light on the situation too.
Food for thought:
CLINICAL MANIFESTATIONS --
Sphincter of Oddi dysfunction
has been associated with two clinical syndromes: biliary pain and pancreatitis. The prevalence of SOD among patients with these conditions is difficult to estimate because of several potential sources of bias among studies evaluating SOD in these settings:...
Evidence that SOD can cause pancreatitis was suggested in an animal model in which transient sphincter contraction induced by application of topical carbachol abolished trans-sphincteric flow and increased pancreatic exocrine secretion and pancreatic duct pressure to levels comparable with that seen in pancreatic duct ligation [17].
The addition of cholecystokinin/secretin stimulation of pancreatic secretion plus carbachol application caused pancreatic tissue damage and
Mine went well -- I actually slept most of the first hour. Then they injected the CCK and... oh my word! Instant pain, nausea, intense desire to vomit. It hurt to even breathe. It slowly faded over a period of about 5-8 minutes, and I asked the tech if that meant it was indeed the GB. She said, "Most likely. And I'm required to write up your reaction to the CCK as part of the report."
When my time was up, the GB was still a very bright glowing ball on the screen. It looked like it had hardly ejected any of the radioactive dye at all.
Supposed to get my results by Friday evening...
PS - Marnie, how do we lower our cortisol levels??
Posts: 220 | From central TX | Registered: Jun 2005
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-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
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(((((John))))) ~ Thank you twice. and then some.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
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quote:Originally posted by TexasChaos: Blue, how did it go for you this morning??
Mine went well -- I actually slept most of the first hour. Then they injected the CCK and... oh my word! Instant pain, nausea, intense desire to vomit. It hurt to even breathe. It slowly faded over a period of about 5-8 minutes, and I asked the tech if that meant it was indeed the GB. She said, "Most likely. And I'm required to write up your reaction to the CCK as part of the report."
When my time was up, the GB was still a very bright glowing ball on the screen. It looked like it had hardly ejected any of the radioactive dye at all.
Supposed to get my results by Friday evening...
Hiya TXC ~ I'm glad the test went well. I think mine went ok; but it was completely different.
I was injected with a radioactive dye first in another room and then had to wait 8 minutes before she could start taking the first images.
So I laid down on the very hard cold table and she took a first set lasting a while and then waited 15 minutes and took more every 15 mintues.
I had some waves of nausea but not too bad.
Somewhere in there I had a spasm of some sort and a load of gurgling and pain. I asked if I could feel where the die was and she said. "No, It's just dye and water."
I had terrible chills the whole time and increased varying pains. It seemed to get worse the longer I was there.
Eventually she let me roll on my side to get comfortable waiting for the next 15 minutes. Slept a little then..
She then took more laying on my back and then took ones with me laying on my left. Then went off to find the radiologist to see if I was done.
They deemed me done and she escorted me out. I was very very weak and out of it and had some trouble walking.
I was told and shown nothing; only that the doc will have the report in 24-48 hours.
I drove home and slept for a couple of hours and just ate a little something in time to go to the internist's office for another liver profile.
I'm glad one more thing is done but am exhausted and fevery and don't feel too great. (Ok, I admit it probably made the whole experience a bit worse since I was couldn't get comfortable enough to sleep last night.)
It really wasn't too bad and anything is better than drinking Barium!
gonna go lay back down
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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cactus
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What, no yummy barium shakes for you, True?! You lucky one, you! That's the HIDA scan perk, I guess.
Glad your test is over, and hoping you feel better soon. It took me a few days to feel back to "normal" after my last HIDA scan, so hang in there. "Normal" for me being a relative term...
TXC, hope you're doing well, too - seeing that glowing ball in your body must have been one strange experience. The CCK made me violently ill, too, but what a relief when it passed, huh?
With all the radioactive stuff in our bodies, maybe we'll all have our superpowers soon!
Just wanted to send some healthy thoughts to both of you.
Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Marnie
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True...for you. Sounds like you have found a "keeper" doctor!!!
Besides impacting the liver and gall bladder, other organs (pancreas) and glands (adrenal and others) can be impacted too in lyme and are worth keeping an "eye" on. That goes for the thyroid esp. as lots of lyme patients can develop thyroid problems.
There is a lot of "interplay" going on in the body as the glands signal one another.
A prime example is the signals sent between the hypothalamus, the pituitary and the adrenal glands...called the HPA axis.
When we encounter an infection...lots of signals are sent to prepare us to fight. These chemical signals are incredibly fast.
For example, after surgery, it is NORMAL for your blood sugar level to be a little high for awhile. Our brain has to have glycogen and our WBCs need it. We need "extra" energy to heal. Many (acidic) proteins are needed during the healing process. This will put the brakes on insulin...to a degree...raise the kick-in level as hydrogen INactivates PFK. When we eat sugar (alkaline) our blood sugar level rises, this triggers insulin (acidic) to counter (the combo makes hydrogen ie, raises the pH). When the "right" blood glucose level is attained, other cells in the pancreas release glucagon (another acid) to stop insulin release (one acid turns off another - "downregulates")...and your blood glucose levels off to where it should be.
Bb is PFK dependent. This enzyme is ACTIVATED by insulin. Several things can INactivate it besides hydrogen. This enzyme is "rate controlling" for glycolysis...do we use sugar or do we use oxygen to make ATP. We can do both. Bb has a "sweet tooth". It ferments sugar.
Texas: Lowering cortisol isn't easy. TO A DEGREE you have control over this. Try not to stress out. Try to stay calm. Let go of anger. If listening to your favorite music helps, do that. If you feel prayer helps, pray. If learning how to meditate will help and you want to try it at no cost (get books and tapes at your library), give it a whirl. You can learn how to breathe more deeply. That sort of thing.
Much of this elevated cortisol is out of your control because this infection is causing the elevation of this hormone.
But what I am saying is try not to make matters worse.
If you want files on cortisol, let me know and I will PM them for you to read at your leisure.
P.S. A CHOLINE deficiency -> "fatty liver" which shows up on an ULTRASOUND only...liver enzymes don't indicate this problem. The liver makes bile, stored in the gall bladder and dumped when we eat something fatty to help us to digest it. Bile (salts) need several nutrients. One of them is choline.
Lecithin (choline and phosphorus) is a "fat emulsifier". It is in all chocolate. It keeps chocolate "smooth". It is in a LOT of things we eat.
Even "Flinstones" kids vits...now added choline. It is very related to intelligence levels and very "protective" in the long run.
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trueblue
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quote:Originally posted by cactus: Glad your test is over, and hoping you feel better soon. It took me a few days to feel back to "normal" after my last HIDA scan, so hang in there. "Normal" for me being a relative term...
With all the radioactive stuff in our bodies, maybe we'll all have our superpowers soon!
Just wanted to send some healthy thoughts to both of you.
Cactus
Thanks for the healing thoughts Cactus! Right back at you!
You know the scan part wouldn;t have been bad if the doc hadn't poked me and stirred up all the pain making it impossible to sleep last night.
Ya, I think Ab pain is better without extra stuff stuck in it.
I think I do feel my "superpowers" revving up. So far they are mostly focused around being extremely good at napping.
Hang in there and I hope things are getting somewhere on your end too. I haven't had time to read any posts today.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
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Thank you, Marnie! Yeah, the doc's a keeper. I had seen one of his partners for something not HepC related shortly after diagnosis because his waiting list was too long. Eventually, I got them to transfer me to the "big kahuna". I had to do a lot of 'splainin' to pull that one off.
Ok, I know cortisol levels were checked a few months ago but the lab lost the result, blah, blah, blah but think the LLMD has it now. I don't believe anyone has checked Pancreatic enzymes. I certainly can ask if no one thinks of it.
The thought of trying to find a good endocrinologist that will work and play with the other docs, oy, I'm afraid to even go there yet.
I know I am and have been for a long time severely out of balance and am just now starting to get enough pieces that sometime in the future we may be able to sort it out.
I just got results of an Spectra Cell test and they were not what I was expecting.
Ironically, my magnesium levels are good. Who'd a thunk? (but maybe it explains the difficulty getting it to help me and/or making me worse. dunno) Calcium was low and Vit D, despite supplementing it for 6 months is still low.
There's a bunch more but trying to assimilate everything is supremely overwhelming. The more I learn the more there is and the less I really know. kinda
Once the present situation is dealt with we'll start back to trying to balance me. No easy task and I commend my LLMD for taking on the challenge. No one's ever wanted to get that involved before.
Ok, I lost track of where I was going. Ha, big surprise! I'm just gonna hit post.
edit: oh yeah, and there was something whacked with the Glucose/Insulin interaction (amongst other things). I tend toward Hypoglyemic, although that result would sort of point to diabetes of some sort. No wonder my head wants to explode.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Sounds like your day was tiring as was mine. Rifing, packing, herxing, rifing, packing, herxing, is finally catching up to me.
Off to bed. Posts: 628 | From the south | Registered: Dec 2005
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Michelle M
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posted
True, I'm so glad you're finally going to get some answers, and from a good duck! It's a relief not to have to figger every freakin thing out by yerself and to find someone who actually seems to know what they're doin!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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trueblue
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Thanks Michelle, I'm glad someone else is at least partially incharge. Maybe have some answers by tomorrow.
Ser, I'll have a look at the hypoglycemia stuff in a bit. I failed a glucose tolerance test 26 years ago. My blood sugar droppped and 6 1/2 hours later hadn't come up yet. They couldn't find an explanation for it.
Anyway, take it a little easy, Ser. Rifing, packing, herxing... Ack, too much!!!! Take a many naps.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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bettyg
Unregistered
posted
True, I'm behind in my reading! Glad you found A KEEPER DR. who knows what he is doing! WHOOPIE.
What's LFT you had at the beginning of your post? so many abbreviations my mind can't remember 1 from another; yuk!
Glad you are doing ok! I donated my GB 5-79; mine was a 10 day stay; unfortunately Murphy's Law hit! Hugs being sent your way. Bettyg
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trueblue
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Thanks Betty!
LFTs = liver function tests (I think)
AST and ALT... they were elevated and that's why I stopped meds a few weeks ago. They are coming down nicely, yay!
I'm sorry 10 days must have been horrible but the term "donated my gallbladder" strikes me as funny. Like who would want a used gallbladder? Certainly not the Goodwill.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Interesting.... I'm a hypoglycemic too. was diagnosed with that many years before I was dx'ed with the Lyme.
About 7 years ago I was flying home from a wedding and passed out in the airport. My blood sugar was a 37!! The ducks kept yelling at me that I should just admit that I was anorexic so I could get some help (I weighed a bit less back then than I do now!)
My poor DH had to jump in and tell them that just a few hours earlier I had eaten a big steak dinner. It was rather funny, actually.
Anyway, that's my random tangent of the day...
Hope you hear from the doc soon, Blue!!
Posts: 220 | From central TX | Registered: Jun 2005
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posted
The GI doctor just called me with the results from my HIDA scan (a full day sooner than expected, I might add).
This doc considers any "ejection fraction" under 35% to be abnormal. Well, my "ejection fraction" was... drum roll, please... a whopping 1%. Yes, you read that correctly, a measly 1%.
He said, "No wonder you feel so lousy." YEAH, NO KIDDING!!!! (I have another apptmt with him on Nov 1 to "discuss my options".)
What a relief to finally have some answers. I just wish it hadn't taken so bloody long!!
Okay, Blue, Cactus, Jif... your turn!!!
Posts: 220 | From central TX | Registered: Jun 2005
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trueblue
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quote:Originally posted by TexasChaos: The GI doctor just called me with the results from my HIDA scan (a full day sooner than expected, I might add).
This doc considers any "ejection fraction" under 35% to be abnormal. Well, my "ejection fraction" was... drum roll, please... a whopping 1%. Yes, you read that correctly, a measly 1%.
He said, "No wonder you feel so lousy." YEAH, NO KIDDING!!!! (I have another apptmt with him on Nov 1 to "discuss my options".)
What a relief to finally have some answers. I just wish it hadn't taken so bloody long!!
Okay, Blue, Cactus, Jif... your turn!!!
Yay, for doctor's calling. Boo, for bad gallbladders that take forever to get diagnosed.
1% no kidding
I'm glad you finally got an answer that makes sense TXC. Good luck with the next step in the process.
Hang in there, in the meantime, and I hope you have a way of alleviating some symptoms in the meantime.
(I keep looking at my answering machine hoping there was a message blinking that I missed.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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charlie
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posted
TB are you giving away your gallbladder?
I'd like to have a few more gallbladders around....especially nice peoples' gallbladders....never know when you might need a spare gallbladder...
Posts: 2804 | From Texas | Registered: Oct 2000
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posted
True, So you didn't find out today? Tomorrow you can call.
I hope it is NOT your gallbladder, rather something that will heal on its own or at least without surgery.
How are you feeling overall???
To tired to write more.
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trueblue
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Ew, Charlie, did you ever see one?
I watched a TV show, musta been in the early days of the discovery channel. Where they took all the organs and explained them and showed you them. The gallbladder was slimy dark green blackish and looked really gross.
But if that's what floats your boat, you're more than welcome to mine. It's not a very well behaved one, just so you're forewarned.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
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quote:Originally posted by serendipity: True, So you didn't find out today? Tomorrow you can call.
I hope it is NOT your gallbladder, rather something that will heal on its own or at least without surgery.
How are you feeling overall???
To tired to write more.
I figure I'll call, if I don't hear anything in the morning, they leave at noon on Friday.
I'm feeling kinda worse... a little more sharpish pain on my right going through to my back. I almost tossed my, whatever is inside me, while I was all clammy and stuff. Now I mostly have chills and want to hold onto my side all the time.
Other than that... doing great.
Rest up as much as you can super-packer. I hope you're almost done.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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charlie
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I'll just take the most attractive segment...as some Italian guy once said; 'all gall is divided into three parts'...
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trueblue
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I'll see-sir what I can do.
Yup, the pun went right over my head, I googled, sad but true. >insert embarrassed smilie here<
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trails
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Member # 1620
posted
my gallbladder is the cutest little green thing I know, next to kermit. But it is COMING OUT! next month, along with the kitchen sink!
maybe we could have a REAL goodbye gallbladder party!
1% is purty bad TXchaos! glad you know now.
knowing is half the battle.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
perhaps we can offer Charlie a 2 (or 3) for one sale
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Yeah, Trails... my DH says I don't do anything halfway. I guess that includes the bad stuff, like malfunctioning organs, LOL!
Wow, there are a lot of us here with these useless green blobs. Sorry, Charlie, but I was thinking about sending mine all nicely gift-wrapped to Steere, Wormser, and Co. Maybe with a nice card that says, "You've been enrolled in the Organ-of-the-Month Club"?
Posts: 220 | From central TX | Registered: Jun 2005
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trueblue
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posted
quote:Originally posted by TexasChaos: Maybe with a nice card that says, "You've been enrolled in the Organ-of-the-Month Club"?
I called and left a message asking for test results. All I know is i've been getting progressively worse sinse the scan. ow gotta go now
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Blue, I'm so sorry! Go lay down and get some rest. Have you got anything for pain? I really hope you hear something soon.
I know a lot of y'all had stones, but for those of us "weirdos" that don't... some research I've done:
---------------------- Acalculous Cholecystitis
At least 95% of people with cholecystitis have gallstones. [2] The 5% of cases that do not have gallstones are known as ``Acalculous Cholecystitis (A.C.)'', ie - inflammation of gallbladder without calculi (stones).
Interestingly, A.C. occurs more often in men whereas calculous cholecystitis occurs more often in women. Also, it tends to occur more often in those over the age of 50.
This is ``a severe illness'' generally due to ``complications of various other medical conditions.'' [1,4]
THEORIES ON POSSIBLE CAUSES ``A.C. has been heavily associated with local inflammation, endocarditis, vasculitides, and systemic infection. Implicated infections include those occurring in typhoid fever, scarlet fever, measles, AIDS, mycoplasma, Streptococcus, and gram‑negative organisms, such as Shigella and E coli. (6) (Interestingly, the Lyme spirochete Borrelia burgdorferi has a Gram‑negative type cell wall - [7]).
``The pathogenesis is felt to be an ischemic injury (poor blood supply) to the gallbladder wall compounded by chemical injury caused by bile acids. It is also associated with patients with vascular disease and immune deficiency.'' [5]
``Supersaturation of bile contributes to inflammation. These processes lead to chronic obstruction, decreased contractile function, and biliary stasis, which contribute to further inflammation of the gallbladder wall. Biliary stasis also permits the increased growth of bacteria, usually E. coli and enterococci, which may irritate the mucosa and increase inflammatory response.'' [6]
COMPLICATIONS ``A much higher rate of complications is observed in A.C. (eg, gangrene, perforation) because of the more fulminant course and coexistent disease.'' [1,4] ``Perforation or gangrene occurs in 40‑60% of patients.'' [4] Additionally, abscesses may form. ``The reported mortality range is 10‑50% for A.C. as compared to 1% for calculous cholecystitis.'' ``Delay in diagnosis or treatment may result in higher mortality rates.'' [1]
TREATMENT ``When the diagnosis of A.C. is established, immediate intervention is indicated because of the high risk of rapid deterioration and gallbladder perforation.'' [1,2] ``Treatment requires immediate institution of broad‑spectrum antibiotics, and occasionally antifungal therapy is also necessary.'' [3] ``The gallbladder should be removed or drained. Surgical cholecystectomy (removal of the gallbladder), either open or laparoscopic, remains the definitive treatment.'' [4,5]
``Patients who develop A.C. are frequently too ill to undergo gallbladder surgery. Therefore, drainage of the gallbladder is frequently accomplished by placement of a tube into the gallbladder through the skin (percutaneous cholecystostomy), and is performed by interventional radiologists. A cholecystostomy can help as a temporizing measure, until the patient is more stable to undergo a cholecystectomy.'' [3]
``Although Open Cholecystectomy (OC) is still commonly performed, the laparoscopic approach has become much more common and is now the new standard. Patients report less pain, a shortened hospital stay, and a faster return to productivity. In addition, cosmetic results are improved. Laparoscopic cholecystectomy (LC) carries its own risks, however. Major complications include bleeding, pancreatitis, leakage from the duct stump, and major bile duct injury.'' [6]
"OC is preferred by many surgeons if the gallbladder is so inflamed that it could fall apart with the manipulations that could be needed with a laparoscopic procedure. LC may be 'converted' to an open procedure during the operation if the surgeon feels that further attempts at laparoscopic removal might harm the patient." [8] Patients who have had extensive previous abdominal surgery, or those with complications of acute cholecystitis (empyema, gangrene, perforation of the gallbladder), will likely have to undergo OC. [9]
``The surgical course is usually routine. Patients can be admitted to the hospital the day of surgery and discharged within 48‑72 hours. The average postsurgical hospital stay after LC is 36 hours, whereas patients undergoing OC typically need to stay in the hospital for 3 days.'' [6]
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Can it just stop now?
What would you take for pain? Would it help chills, fever, queasiness, etc. Side/back pain is worse than anything?
I would just like an answer and the doctor's office to make some suggestions.
Gonna go hide back under the covers.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trails
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Member # 1620
posted
call that doctor and tell them what you are experiencing!!!!!
there is no reason to suffer like this. it is THEIR JOB and they are often okay when patients call in physical distress as you are!
PLEASE CALL the doc and find out what he suggests you take for this pain.
trueblue
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Member # 7348
posted
quote:Originally posted by trails: call that doctor and tell them what you are experiencing!!!!!
there is no reason to suffer like this. it is THEIR JOB and they are often okay when patients call in physical distress as you are!
PLEASE CALL the doc and find out what he suggests you take for this pain.
I called at 10 this morning Trails. The medical assistant just called back and said the gallbladder, liver and part of the small bowel that they could see all looked perfectly normal.
I asked whether she was sure they performed the test correctly, especially since I am much worse since they did.
Also no one has address the pain on the lower right side either.
I told her exactly what was going on. I also said, no matter what this is it needs taking care of NOW. She's tracking down the doc to find out what to do.
She seemed to think enough stones could cause this problem.
So I'm waiting for another call back. And no help in sight. I don't want to do this anymore, ok?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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5dana8
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Member # 7935
posted
I am so sorry true
Hang in there
Hoping & praying they can get to the bottom of the causes.
This will passs & won't be forever, although it must feel like that by now
True
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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cactus
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posted
Ouch, True, I'm sorry you're hurting! Not having a clear answer is the worst, too...
Won't be any consolation, but after my HIDA scan last year (which was normal also), I had the worst week of pain I'd had in a long time - kinda thought they stirred stuff up or something. After that week, it slacked off for awhile - hopefully yours will settle down, too. But another ultrasound a few mos later showed stones and sludging, so out the GB went - and I've been better since (up till now, and all my recent pain!).
Hang in there, ok?
TXC, sounds like maybe you have your answer...
Trails, yours is coming out for sure? Maybe you need a nice, cuddly stuffed Kermit to replace your GB!
Ever think our surgeons should offer bulk surgery options? Take out all the, a-hem, "expendable" organs at one time for a discount? Kinda like warehouse shopping. Scary thought.
Hoping everyone's feeling better today.
No news on this end, but whatever's going on here seems to have settled down, so I'm patiently waiting on my doc to call back...
Happy weekend to all, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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trueblue
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Member # 7348
posted
(As an aside... The ultrasound already shows stones. One last year showed a single either stone or polyp. I've had gallbladder problems since my early 20's and am tired of nursing the damned thing.)
Anyway, the medical assistant just called back. the doc says the liver and gallbladder check out fine. That's why I was there. Apparently their job is done.
If I need something else notify my internist because if I went to a hospital he would be the admitting physician. That office is already closed for the weekend (and they sent me off to this one because they couldn't be bothered).
So... no answers (or answers but they are all no) no help, why bother.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I cant believe this.
They didnt even tell you what to do for your pain?
Can you call your LLMD and have him call in something for pain?????
I am sorry trueblue--- you really sound like you are in pain and have way too much suffering.
trueblue
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Member # 7348
posted
The medical assistant said I could take Advil. (Well, first she said Tylenol and then remembered the liver thing.)
She also told me that she has her gallbladder out and gets some biliary spasms and Xanax works for her if I have any of that.
I have some but it's reserved for bedtime. I don't dare increase my daily intake of it. I could concievably take a small portion of my night dose earlier.
I am not in so much pain that I can't stand it. I am feeling pretty sick all the time, though. A little better at night (and better while I'm eating, if I eat). I just can't go on like this forever, it's been a couple of months already, and not getting any better.
I can't think of any other ideas but to call the LLMD on Monday and see if they have any ideas.
My LFTs are better. The AST is back in range and the ALT 104 (under 63 would be within normal range). I can probably start back on some sort of supps or meds now, or soon, if we're careful.
All that's left is TBDs if nothing else tests out and I'm not likely to get anyone here to address those, nor to look any deeper at what's going on I'm afraid.
(I do believe the GB is bad regardless of what the tests say. I just think they aren't looking at the right things and it's moving on to more GI stuff.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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I can't believe how they are shuffling you around. I really hope your LLMD can help out somehow. This ain't right.
And ADVIL??? Oh, please, you might as well drink water. This ain't Advil kind of pain!! This is "Lord, give me morphine now or I will kill someone" pain.
I hear you on the back pain. I actually MELTED part of my heating pad the other night from overuse on the highest setting. Oops. DH thinks it's funny, but I don't.
And I agree it's probably your GB, no matter what their tests show. It worries me that your LFT's and such are dropping back to normal. In GB disease, the levels often drop back down once chronic disease of the GB is established.
Is there any way you could get a "second opinion" from another specialist? I had to go through a few ducks myself before I finally found one who would listen and look where I was telling them to look.
I am so sorry. I am keeping my fingers (and toes) crossed for you.
Anybody live near Blue that can take her some chicken soup??? Seriously!
Posts: 220 | From central TX | Registered: Jun 2005
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trueblue
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posted
Thanks Trails and TXC, I really don't know what my next move is.
(The medical assistant did say the gallstones could have caused the spike in LFTs.)
What I don't understand is if there are stones and they seem to think there are AND they are causing pain(and likely illness)... wouldn't you think there would be some way to address that problem?
I have a friend that always thought she had GB problems. Since she was a child anything oily, fried or too rich always made her sick.
(This made perfect sense to me, she was describing exactly what I've been feeling since my early 20's. I am very careful about what I eat because of it and many foods are just to yucky to even think about. People think I'm just a picky eater, I am to an extent, but there are all these things I can not eat, as well.)
Anyway, back to my friend... all of her tests always came back fine, her concerns were ignored over and over. Eventually, sometime in her late 30's, I think, she needed surgery for something else. Can't recall the exact details.
She asked the surgeon to take a look at the gallbladder while he was in there. Darned if it wasn't horribly diseased and he removed it.
She told me that she never knew what it was like to just eat normally until it came out. She didn't know how bad she felt until the troublemaker was removed. It was the most amazing thing to not have to deal with that anymore.
I don't know why I told that whole story. It makes so much sense, though.
All I can think of at this point is trying to find something natural to try and improve the situation and need to run that by the LLMD. I can go back to 6 glasses of papaya juice a day, I suppose. Sure is a lot of sugar, though.
I don't I want to waste more money on trying to find someone else to not do anything about this. (The tests I had so far are going to cost me more than I have as is.) I'll also call the internist's office again on Monday but doubt it's even worth my time and effort.
I'm going to try and round up all the test results and send them to the LLMD on Monday, if I can. The gastro wouldn't fax out of state.
I'll shut up now. It's very possible cactus is right about the test. That seemed to make me much worse. Maybe in a few more days it'll be out of my system. I had some weird reaction to the dye anyway. I coughed and had shaking chills through the entire procedure. I was thinking the A/C blowing in my face, maybe not?
I don't know what to think and am rambling. I'll stop now.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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