Topic: Help, Gallbadder/liver problems, not sure what to do.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
[You could read this post and scroll down to my last post from tonight.]
I'm not sure what to do. I was on IV rocephin for 5 months, and had GB symptoms on and off---nausea mostly, sometimes severe and constant. Ultrasounds didn't show anything.
Then, I had 3 severe GB attacks recently---severe pain and nausea, liver and GB hard and distended, vomiting, sweating, and starting to pass out when I even sat up. Ended up in the ER. They didn't find anything on the ultrasound either. Liver enzymes and lipase were pretty high.
So I stopped the rocephin, dr had me stop all tx until my liver enzymes and lipase came down (lipase is still high, but not as high).
Then, 2 days ago I started IV doxy at 200 mg. And I'm doing IVIG again yesterday and today.
All during rocephin tx, I was doing Liver/Gallbladder flushes before I started, every month, and then 3 weeks in a row, when it was bad. Plus, of course, Actigall, and regular coffee enemas.
It is now better, but not so good. I still have bad nausea and pain in my liver and galbladder, just not severe and not constant. (My dr is out of town, so hard to get a hold of).
I think that I should get another ultrasound tomorrow, although they haven't shown anything to date, so probably useless. And I scheduled a HIDA scan for next week, and will ask my dr on Mon. to rx it, and have to get Preauthorization. And I won't continue on the IV doxy for now.
I'm just not sure what to make of it all. And it's so on and off. And not severe, but definitely doesn't feel right. I hear that sometimes even the HIDA doesn't show what is going on. I feel kind of lost about it all.
I'm also going to do another Lliver/Gallbladder Flush this weekend. I DON"T want to lose my GB!! Feedback?? It's hard that it's so hard to get my dr. Don't know whether to try again today (he's on LA time right now). I've called several times recently with this emergency, so I don't want to be a pest.
It's also better today so far, but it seems to get worse as the day goes on, so not sure that it will last. Sorry for the thesis!
[ 06-04-2011, 05:11 AM: Message edited by: Rumigirl ]
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
posted
The thing that seemed to help hubby most with pain in the liver area was castor oil packs. I really don't see how that could hurt.
I am sure you are probably aware that liver/gallbladder flushes are supposed to be avoided if you actually have gallstones, but as you said there has been no evidence of that.
There are some different herbs which might help.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, Bea, I forgot somehow about the castor oil packs.
The weird thing is that I would have thought that all the flushes would have taken care of it. They have helped a lot, but not enough. With all the flushes that I've done in my lifetime, which are many, I've only had stones come out once or twice a very long time ago. And none showed up on the ultrasounds. The darned rocephin is the cause; it is supposed to cause precipitation in the GB. Well, I feel it! They didn't even see sludging on the ultrasounds, which surprised me.
I feel like I"ve fallen down the rabbit hole. I think I need a break from tx for a while---although I hate to lose ground, which I already have anyway. : - (
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
posted
Any chance you can get well on orals? If you want to keep your GB .. it may be the better choice.
The castor oil packs may help. I recently used castor oil packs on what looked like a boil coming up. It went away in about 7 days. Pretty good stuff!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Well, I won't be doing rocephin, that's for sure. The unfortunate thing is that I had just bought a month's worth of it, however!
I don't tolerate a lot of orals well, plus, I do think I need IV. After a break for things to calm down, that is. With doxy or something else. We'll see. Sigh.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
You might try an ultra low fat diet for a few days to see if you get any relief from the attacks. Are you on any herbs or supplements? They might also be too much for you liver to handle right now.
Whether you call your doctor again or not really depends on how you feel. Do you think that your doctor will be able to do anything besides refer you back to the ER? I would hold off unless the pain became unbearable.
Hugs, I'm sorry that you are having to go through this extra stress.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
chiquita incognita
Unregistered
posted
The naturopathic sources that I trust best are here, you can do a subject search:
www.christopherhobbs.com see the online herbal prescriber database, click on ailments, then click on G for gallbladder and see what comes up.
Feedback: This is not medical advice, and each situation differs depending on severity of the situation and other factors, to be determined by your doctor.
That said, when working with the public in healthfood stores for about 5 years, I observed that people who had their gallbladders out, tended more toward food and other allergies than prior to that procedure.
Also the gallbladder concentrates bile from the liver, which breaks down fats and cholesterols. You will need to be extra cautious about dietary fats without a gallbladder.
Again you should talk to your doctor and this is not medical advice.
Chamomile compresses may be anti-inflammatory, especially if combined with yarrow if you can find it. If not then chamomile could help. Careful, the compress will stain, use old towels and protect bedding et al with extra towel layers.
You could try alternating that with the castor oil packs to see what works best. I would suggest cool compresses and not hot if there is inflammation.
This is not to replace medication and you should be under a doctor's very watchful eye. Don't worry about "being a pest" when you have a crisis like this, it's your doctor' s job and right now you really *need* to be protected. Take care of yourself, not them!
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I did put out a call to my dr to rx the HIDA scan and start the Preauthorization process. However, he often isn't very good about responding in such situations---sometimes he doesn't, sometimes he does.
Believe me, I have no intention of having my GB out! I've been a practitioner myself for decades, so I am and have been doing lots to help my liver and GB. That's why it's surprising that it hasn't been sufficient. Then again, it's only because of the rocephin that it hasn't been sufficient.
Today I only had a mini-liver flush, apples blended in diluted cider, and tiny (and I do mean tiny!) bit of a simple dinner.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
posted
Are you taking the supplement taurine? That amino acid is critical for detoxing meds. Also extra b vitamins.
Dandelion tea might be another good choice.
Was reviewing one of my books last night. In my opinion it is one of the best for explaining how the liver and gallbladder function and the necessry nutrients and herbal options for help.
The Liver Detox Plan by Xandria Williams. This is an out of print book published in 1998 in England. Amazon has 22 copies available with the cheapest costing 2 cents plus postage. Here is a link.
I had all this for years, had my GB out when I was 27. It ended up years later as Pancreatitis then Chronic Pancreatitis. Does the pain ever wrap around from your stomach to your back?
Get a CT with contrast of the Pancreas and make sure. Pancreas pain is the worst pain I have EVER had. For now? Liquid diet period, no toast, not even chicken soup. Just broth and jello. If that helps after about 4 days I would suspect the Pancreas.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, Bea, and everyone.
I had another ultraound done yesterday, and, as I expected, it didn't show anything. But my liver, gallbladder, and perhaps pancreas (?) were quite tender when she pressed with the ultrasound wand. Today it's better than yesterday.
The symptoms, other than that, have now ended, thank God! And I did yet another Liver/Gallbladder Flush yesterday and today. And I went off IV meds, Mepron, and Artemesisn several days ago.
Now I don't know whether I'm ok now, esp if I lay off tx for a while and take herbs for my liver and gallbladder, or whether I need to still do the HIDA scan to make sure. Or whether I need anything else to make sure about the pancreas.
My blood tests when I was in the ER 2 weeks ago didn't show anything suggestive of pancreatitis, which I thought was perhaps a consideration (ugh!).
I'm supposed to see my Dr. tomorrow, but am thinking that I should wait until he gets my blood tests and ultrasound results, and perhaps a HIDA scan and results, too.
He is only going to be available next week, and then not for another month, as he as moved to the other side of the country!! And he's very hard to get on the phone in between visits. Not sure about whether to go ahead with further testing, or hope that the improvement holds.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
You said that the lipase level was high in the ER. Amylase and lipase are the pancreatic enzyme tests. But they can be elevated with gallbladder problems as well as pancreas problems.
Unless you have a good PCP who will order tests, I would probably go ahead and go to the LLMD tomorrow and get orders for whatever tests seem reasonable. Just because you have the orders you do not have to do the tests now -- but it would be much easier to schedule them in a week or two if needed if you had the orders in hand.
Have you had the liver enzymes retested? I think that at least that should be done every week or two while you are symptomatic.
I know how frustrated hubby and I both get when something like this happens and your treatment schedule gets shot and noone seems to be able to tell you what to do.
Glad you are at least feeling a little better.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Go ahead and see the doctor tomorrow. That way he talk with you face to face and perform a physical exam. If you continue to feel fine, that's great. If you have another symptom flare at least the doctor will have a better idea of your physical condition to help guide him in what to do next.
I do hope that you continue to feel better and better everyday.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
Are you sure it is the rocephin? And the gallbladder?
I had liver problems with mepron and had to stop for a while.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Well, I just had another HORRIBLE attack that I am still going through. Writhing and groaning on the bathroom floor in pain, ready to throw up, starting to pass out even lying down. It feels like someone is kicking me in the diaphragm and they aren't stopping.
I did redo my blood tests, including the lipase on Friday (don't have results yet). Clearly, I need to do the HIDA scan. I hope that that shows what it is.
The pain is definitely in the liver/gallbladder area, and referring to my back and head as well. My back has felt "broken" directly behind my GB for quite a while now.
The rocephin has done it to me repeatedly to one degree or another. The mepron probably adds to the liver overload.
It just feels like I am only going through h*** for such a long time, nothing even approaching improvement. It's hard to take. I know so many know exactly what that's like.
It's still bad enough now I am considering going to the ER, but I don't want to. They are usually quite useless---unless they admitted me and I got the relevant tests faster. But I won't go unless it's even more dire.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I hope you feel better soon!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
Pain around to your back is Pancreas. My first attack my enzymes were normal so they did a CT and the Pancreas was inflamed and enough for them to keep me in the hospital for five days. Liquid diet, try it I think you'll feel better in a few days if you go liquid.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
The symptoms went on for at lest 5 hours last night.
I think with all the specific symptoms I'm having that it is my gallbladder (and liver, too). My blood test results aren't indicating pancreas at this point, although I considered that. The area of pain is much bigger than my pancreas.
I'm scheduled for a HIDA scan tomorrow at 2 pm. So we'll see. If the scan doesn't show what's going on, then it's on to a GI dr and a scan of the liver, GB, and pancreas, I guess. I hope I get some answers soon. thanks, guys!
I'm so used to being able to take care of many problems with natural remedies that I'm surprised that the Liver/Gallbladder Flushes didn't take care of it. But then again, all my natural treatments for Lyme and co got me nowhere, also. : - (
I just want some relief and some forward improvement on the treatment front. No such luck for quite a while now. I know I have lots of company in this, unfortunately.
[ 03-21-2011, 04:35 PM: Message edited by: Rumigirl ]
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I had the HIDA scan this afternoon, but much to my surprise, my dr rx'd it without CCK (the stuff that makes your gallbladder contract). While that is the stuff that can possibly make you have symptoms during the test, I would think that they could see more when they use it.
The dr reading the scan said that everything showed as normal! And the weird thing is that as I lay there, even before the technician injected the radioactive stuff, my gallbladder was hurting---not severely, but definitely hurting---which it did during a fair amount of the test. I wonder if I shouldn't have had the test with the CCK.
So, still no answers. I see my dr on Friday. No way am I going back on tx until I get this straightened out. The attacks are horrendous. So, I guess it's on to more testing and a GI dr. Blast! Unless I wait and see if I get another attack. But they are so unbearable, I hate to just wait, and then have to go through more dr's and testing anyway.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
posted
I have heard of people who test normal but when their gallbladders are removed, they are in very bad condition.
Not encouraging surgery, just passing along what I have heard.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yes, lou, I've heard exactly the same thing. The gallbladder is sometimes filled with Borrelia, as a mater of fact! LymeMD on his blog talked about that. It's frustrating to not know what the heck is going on, when something is clearly very wrong.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
chiquita incognita
Unregistered
posted
Rumigirl, do the ultrasounds show gallstones if present?
If not could this explain it? (I am assuming they can see them however).
Perhaps the flushes did not work as anti-spasmodics and that is what is missing in this picture.
The book Pocket Guide to Herbal Medicine is written by Karin Kraft, MD who spearheads the Commission E in Germany (like the FDA here but she is herbally savvy) and Christopher Hobbs, LAc one of the world-top phytotherapists with 35 years of practicing experience.
The gallbladder disease info is on page 182 and 183, hope this long link works! If not go to Google Books:
They mention that digestive tract inflammation can cause the condition or be associated with it.
In the book above the authors mention anti-spasmodic herbs for the gallbladder, bile moving herbs are indicated say the authors, turmeric is recommended as anti-inflammatory and valerian root is used as antispasmodic, as are a list of additional herbs. See the link above or go to Google Books to download the book to read about anti-spasmodic herbs for the gallbladder.
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. This is not medical advice, talk to your doctor.
IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, Chiquita. Yes, the ultrasounds show stones and sludge, and I didn't have any show up. Plus, the scan I just had was supposed to show them, also. I know I don't have stones.
It all started with the rocephin; I never had this problem before except when using rocephin. It can precipitate in the GB.
The flushes do work as antispasmodics when you do them, but not afterwards.
I have some ideas about natural tx for it. We'll see. It's so on and off, that's weird, too.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
If your LLMD will not order the test with the contrast a G.I. doc may not want to order contrast either. Hubby ran into this with a non-lyme literate G.I. doc. That doc said if hubby was symptomatic then he would not order contrast because that could inflame the gallbladder.
The test done on hubby was not the HIDA scan but was called something else that I can never seem to remember. The test showed that he probably has one pancreatic duct which is smaller than normal (probably a genetic defect).
Anyway, I just give him lots of very strong liver and gallbladder herbs. His problems have always been more related to dry heaves and gastritis rather than the pain you are experiencing.
His elevated bilirubin is from blood cell destruction rather than from blockage from gallstones. Breakdown of the total bilirubin into direct and indirect numbers can point to the cause of elevated total bilirubin.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
chiquita incognita
Unregistered
posted
Hi Rumigirl You poor thing, what you are going through! I am so sorry to read about it and applaud your stick-to-it-iveness and determination!
It would be interesting to read your thoughts about further things to do to help yourself, but only if it is not violating your privacy or taking you away from your rest/healing time.
You take care. FYI I too used to have the kind of writhing pain that you are describing (not gallbladder in my case, it was other stuff) and by golly, I recovered and in full, too. I used to have ovarian cysts and endometriosis with the kind of pain that i couldn't roll over in bed or it seemed as if my insides would burst. Again I recovered, absolutely completely, more than 20 years ago without any relapse. It is not the same issue but I did want to share that with you as a note of hope.
What got me through the pain was castor oil packs, helped enormously.
Very interesting information as usual, Bea. You are always so sharp. What you have been through with your hubby and what he has been through, is really benefiting others at this point. Thanks to you both.
Well you just had the GB test and nothing showed. Believe me when I tell you this. It still sounds exactly like Pancreatitis. You can have Pancreas problems even if your enzymes are normal. It took years for them to figure it out with me. I had stones so had my GB removed because I thought it would get rid of the terrible attacks I was getting.
I had my GB out when I was 27, I'm 57 now and still get the attacks only now after CT with contrast of the Pancreas I have been diagnosed with Chronic Pancreatitis. I think for all those years it was really my Pancreas.
Stay away from fatty foods and any kind of Cyclines. If you get an attack go on a liquid diet and see if you feel better. I just think from reading your posts you are positive it's your GB just like I was and it may not be so.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I had my gallbladder out too and the pain is the same as before I got it out.
Constant stabbing pain at my ribcage, right side. Sometimes the stabbing turns into a stab & twist with an ice pick.
Now that my gallbladder is out... my pain gets worse when I eat foods like broccoli and cashews.
One GI doc said it is "sphincter of oddi" They did some scope to confirm it and said there is a surgery that can fix that but chances were 60% that I would get pancreatitis even if I had the surgery.
Since I had already had my gallbladder out... and there were not good odds for this second surgery... I decided to self treat.
Mine seems to go away or at least calm down when I take acidophilous.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
Acute Pancreatitis is a term used for that condition in which the organ swells up and the symptoms that can warn you about the disorder are as follows: � Trauma � Hereditary factors � Consumption of Alcohol � Consumption of Drugs � Presence of blood fats � Gallbladder Disorder � pain in the abdominal Area � Vomiting � Rapid Pulse Rate � Fever � Low Blood Pressure � Dehydration Symptoms of Chronic Pancreatitis
Most of the symptoms of Chronic Pancreatitis are same as Acute Pancreatitis but then there are some that prove that the stage of Chronic Pancreatitis is actually an advanced stage of Pancreatic disorder. Here are some of the following: �Pain in the abdomen �Loss of Weight �Malabsorption Malabsorption occurs since the pancreas fail to work properly and therefore it doesn�t release the pancreatic juices and enzymes. The food is not broken down neither are the nutritional elements absorbed, thus resulting into malabsorption.
The pain in the abdomen is the common symptoms in case of all pancreatic disorders and can be sudden and severe. It is mainly in the center of the abdomen where the pancreas is located and then spreads in the whole of upper and lower abdomen. It should be observed if the pain occurs only after eating something of it does then it is a sure sign of pancreatic disorder. Another common symptom is increase pain when the individual lies down on his back. Since pancreatic disorder affect the eating and digestion of food, pukish feeling is very common because the body wants to get rid of the food that it has eaten. Pancreatic Problems also lead to problems in the liver. There are many associated disorders, which ail the human body if Pancreas malfunctions.
Posts: 406 | From Rhode Island | Registered: May 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Arrggh, MusicMan!! I hope you aren't right. One of the many reasons why I think it's the GB is that the pain is often exactly where the GB is. Then, other times it has been in the center + where the GB is.
When I went to the ER a couple of weeks ago, one of the things I told them I was suspecting was pancreatitis. But they said that my blood tests didn't show it (this in spite of my lipase, a pancreatic enzyme, being double the highest in the normal range, and despite my ALT and AST (liver enzymes) being quite high, also). They weren't any help in the ER.
So how did you or do you find out that it's pancreatitis?? And what do you do about it? To have Chronic Pancreatitis for years sounds quite bad. I never had any of this before the rocephin. I was also on Mepron, 3 tsp/day. I never had trouble with Mepron, but I know it's hard on the liver, and sometimes the pancreas. My LLMD said he had one patient that got pancreatitis from it!
Not sure what my next step is. It's all quiescent now, but . . . I see the LLMD tomorrow. I probably need further testing. What tests should I ask for? I assume a scan with contrast of my pancreas, liver, and GB.
So the cyclines, as in doxy, are hard on the pancreas? I just stopped rocephin (just bought a month's worth), and had just started IV doxy, when it got worse again, and I stopped all tx.
I know this sounds simplistic, as it can't be all there is to it, but my GB kept feeling really tight, and the same with my back in the same area. So I did Polarity Therapy on it the other night, and it hasn't bothered me since. I know that I can't count on that taking care of everything though.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
MusicMan, did you get pancreatitis from abx? I assume that you have quite a bit of pancreas damage, as I would think you wouldn't still have the symptoms otherwise, right?
Can you use abx now, or is it too hard on your pancreas?
I'm not having the symptoms now. It's so on and off! And it doesn't hurt on the left side, only the right---and sometimes in the middle. I can eat fats fine most of the time now, just occasionally I have an attack, but not sure if it's definitely from fatty foods every time, maybe though.
So the CT scan with contrast is the main test for it? (I see that there are other tests, including an MRI). I just wonder if the tests will show anything when it's not symptomatic? Enough already!
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
Well I did not get diagnosed with Chronic Pancreatitis till about a year ago. About two or three years ago was when it started. I was taking Minocycline and had a bad stomach ache but figured it was the drugs so I just put up with it. Well the pain was right where my GB used to be so I knew it wasn't that. After about 5 days of that pain that got so bad I could barely stand I finally went to the hospital.
When I was there the they did blood work and my enzymes were normal but the Doc on duty could see how much pain I was in so he had me do just a CT scan without contrast and they found my Pancreas was inflamed so the admittied me and put me on IV and liquid diet for about 4 days and I was fine.
I've always gotten those stomach aches like I posted since I was little but I think the Cycline took me over the top.
Chronic Pancreatits is worse, it's chronic man. That means every time I have an attack now my Pancreas is getting damaged but I'm not a big complainer and just keep going.
I've been on one kind of antibiotic or other for over 10 years now and it's taking it's toll.
Oh! And NEVER tell the people at an ER or even your Doctor what you think it is because they get all ****y about it. So low fat foods small portions and liquid diet if you get another attack.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you. But when I have an attack, I couldn't even think about drinking water! And then, when it's finally over, I'm ok (or mostly ok). But the attacks have been getting longer in duration! Went from a couple of hours to 6 hours (getting better slowly after 2-3 hours).
And then I can eat---gingerly at first, of course. But then after that, I can handle fat, etc. So why so on and off??
I looked it up. I think we're both right. Because gallbladder obstruction (or whatever) can cause Pancreatitis. Plus, the various meds can all cause it, esp all together.
At the ER, my lipase (GB enzyme) was double the highest range of normal, and my liver enzymes were high. But because the lipase wasn't 3 xs the highest normal range, they said it wasn't pancreatitis! (I'm filling in the blanks here, they didn't spell it all out).
When I have an attack, I couldn't even make it to the ER during it! I'm writhing and groaning on the bathroom floor, throwing up and almost throwing up. And passing out if I try to sit up. Only an ambulance would get me there.
And then in between I seem to be ok! Except for quite a while my liver and GB hurt a lot, but less so. Oh Lordy!
What caused your pancreatitis originally I wonder?
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I found out today that in the ultrasound report from last Saturday, the radiologist did see new sludging in the gallbladder. And my dr said that I should see a GI dr and perhaps do more testing before proceeding with treatment, as I had figured I needed to.
And my liver enzymes and lipase have come down a lot, but not all the way yet. He wants them down into the normal range before proceeding with treatment. And he doesn't know what the best GI tests are for this, so I need to find a Gi guy.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Well, I did see a GI dr 2 1/2 weeks ago. And my liver enzymes came down into the normal range. The lipase is still a bit high, but has come down a lot. The GI dr agreed that I could try to save my gallbladder by taking 3 Actigall per day over months to get rid of the sludge. He said it usually takes 6 months, if it's going to work. In my case, at the higher dose of Actigall, he thought maybe 3 months, if it's going to work.
I've continued to do some more Liver/Gallbladder Flushes and will do another this weekend.
My LLMD allowed me to go back on to go back on IVIG, and then back on IV doxy last week, and increase the dose.
BUT, although I haven't had another full-blown attack since March 20th (thank God!), I continue to have significant pain. It often hurts when I lie on my back, it hurts sometimes just lying in bed.
And my back through all this has been HORRIFIC. So bad I can hardly move. It's directly behind my GB area. I've been to the osteopath 4 times for adjustments and to get worked on, gotten trigger point shots, been to the deep-tissue massage therapist 3 times, been the the chiro once, worked on it and stretched plenty myself..
All of that helps temporarily, but then the back pain is right back. Not as severe as an attack, but not good. And the back pain feels like a rib is poking into my kidney!
And now here we are going into a holiday weekend. I'm going to try to get the GI dr ,or his PA, tomorrow, but given that it's Friday on a holiday, I think good luck! And I'll try to get my LLMD about whether to get my IVIG treatment tomorrow. But I don't think I'll get him in time to know either. He's across the country now. Don't know if I should stop the IV doxy. I'm inclined to stop everything again until this is sorted out. This is really hard. I've had it.
No one has yet suggested getting my gallbladder out, but even if they do, so many people have said that their pain continued even afterwards (@ 50% it seems). I'm not convinced that it isn't also my liver and pancreas. It certainly was my liver and pancreas, too, when it was at it's worst. I just can't take this pain much more. But the holiday!
[ 04-23-2011, 02:34 AM: Message edited by: Rumigirl ]
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
I am not nearly the expert, but I would stop everything right now until you can find out whats wrong. Why create more die off by takng abx if your already having problems.
Rocephin, as I am told by almost everyone, causes these side effects and one reason why many do not like to use it anymore.
Please just take care of you and not lyme right now. Causing permanent damage to your organs for an abx is not worth it. Give your body a rest until you find out and get some relief. Even after you need to let you body heal and balance out again before even considering more abx.
Feel better. I only went through on severe herx and was ready to give up, I cant imagine what your going through. Your in my prayers Ann
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
The way I understand it, the Castor Oil Pack opens the liver and gallbladder up so that the flushes can flush things out.
If you're not doing the packs, opening up the ducts in the organs, then you can do all the flushes you want, but the stones and junk will just get stuck and stucker.
It's not like I'm an expert on this by any means, but I am learning some and watching it all work, amazingly, right before my very eyes.
My daughter is doing amazingly well in just 3 months.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Rumigirl ... ouch, I can't imagine what you are going through. I don't have any solutions but I'm guessing that the GI doc would have suggested to take out the Gall Bladder if there are lots of stones or if they are large. That can be dangerous.
Maybe you should have a CT. I know, more tests just what you want.
I've heard that stones from Rocephin are made up of calcium not fat like most stones. They should disolve if there are not too many.
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I know I'm stuck on this same thing, but when my daughter passed over 30++ stones, some bigger than a quarter, she had no pain.
That's because the HEAT from the castor oil packs OPENED the DUCTS!!!
Also, gallstones come out thru the rectum (not thru the uretha) which is equipped to handle bigger items...
You can get the stones out.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thanks, guys. I don't have any stones. But I recently did get sludging from the rocephin (which I stopped on March 5th (after I had just bought a month's worth!!).
I did get the GI dr's office today; he ordered blood tests, which actually weren't any different from what I've been getting for my LLMD, with the possible exception of the bilirubin. So we'll see what he says from those results.
It's better today, but my back is still not good.
BTW, I meant to say that I upped my Actigall to 3 times/day when this got bad, not twice/day.
When I do the LIver/Gallbladder Flushes, I do tons of magnesium with it, and that opens the bile ducts. But I do need to do Castor Oil packs. I've just had so much going on, that I haven't, but it surely would be good. When you haven't done it in a while, it seems like a lot to set up and messy, too. But when you consider how much I do for other detox and treatment, I guess it's do-able.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I am continuing to have bad problems. I haven't had any more full-blown gallbladder attacks, thank God! BUT I have had on-going nausea and not being able to eat much. I'm continuing to lose weight (15 #s so far). And I've had back pain that is horrific, to the point that I can hardly move. And I've had tons of osteopathic and chiropractic treatments, trigger point shots, and deep-tissue massage---all to no avail with my back. The worst is right behind my gallbladder.
Next Thursday I go for a procedure (Esophagogastroduodenoscopy/Endoscopic ultrasound) to check for stones in the bile ducts and pancreas problems, etc. I'm so sick of this. It's been going on this intensely since February 22. I did have bad nausea on and off for a long time though---all in connection with the blasted rocephin.
I'm in between LLMD"s (mine moved across the country with basically no notice!). I see a new one on Tues. I had stopped tx for 6 weeks. Now I'm not sure if I should stop again until this is taken care of---which may be a while. It's already been 3 1/2 months of this intensely.
It also feels like seeing the new LLMD, who is a neuro and ungodly expensive is crazy until I get this sorted out with the GI dr. But it took 3 months to get in to see the LL neuro!! So I'm keeping the appt.
I just hope that this hasn't developed into Chronic Pancreatitis, as well as gallbladder/liver problems. I'm wondering if my days of abx are over for now.
[ 06-04-2011, 06:26 PM: Message edited by: Rumigirl ]
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I'm on the verge of going to the ER and trying to get admitted. The back pain is so bad, I can barely move at all, even with Percocet or Oxycontin and tylenol. Not sure if I should soldier it out, as I have, and wait until I get a stool test for the pancreas, another ultrasound, and the EDG/EUS done Thurs.
The dr isn't suspecting pancreatitis. I am suspecting that myself, in part because Musicman alerted me to Chronic Pancreatitis. It's the severe back pain that makes me suspect that. My lipase is going higher again, too, although not that high yet.
I don't know how I can make the 2 hour drive on Tues. to the new LL neuro, 2 hour wait, and 2 hour visit. And how can we plan treatment when this is going on, and we don't know what is going on?! But otherwise, I have to wait another 2 months probably for another appt. And I'd have no treatment in the meantime. Arrrrgh!
[ 06-04-2011, 06:27 PM: Message edited by: Rumigirl ]
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
posted
Rumi- I am so sorry you are still in so much pain and that the timing is threatening your new dr appt. That has to be so frustrating after waiting so long to get in with the neuro.
I just found this thread and read with great interest as I have developed what I assume is gb issues from rocephin. I stopped it as of this week since I've been having pain for the past 4 days and worsening.
I truly hope you find the cause of your pain and get relief quickly. Please keep us updated!
Posts: 47 | From Texas | Registered: Oct 2010
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hugs Rumigirl, I'm praying for you tonight.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic