randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i am now in pain 24/7. it varies from 2 to 5. i am getting no sleep as i can't lay on left or right side. the pain is going through to my shoulderblades.
gang, i really don't know what i will do if it is pancreatitus. i don't know if i want to live like this. on pain meds and not eating the rest of my life.
please, could it be anything else besides pancreatitus? could it be lyme? infected bowel, colitis, anything?
oh God, i don't know what i will do. the pain is wearing me down. i'm tired and weak, no sleep and absolutely terrified.
i got out my old records. i had a colonscopy in 2010 and an eus in 2010 also. both were normal except for diverticulitis. could this be diverticulitis? i wouldn't think so not up so high and wrapping around the sides.
it feels like a lumpy muscle mass under my left rib in the middle. it moves like a gristle or something.
my sister says maybe an ulcer but i've had these attacks for years on and off, but this last one has been the worst and it's not gone away either.
because i don't vomit and have no fever and my enzyme levels don't go up, the doctors say it can't be pancreatitus. but from what i've read, that's totally wrong. but during my hospital stays my enzymes never go up, everything is normal. how could that be with an acute attack?
i have a friend who has chronic and she's in and out of hospitals all year. she never goes anywhere. she must not weigh 90 pounds. how she lives i don't know but i could not do it. she is going through a pancreas transplant i think. she lives on death's door every day.
also my sister suggested just plain ole stress. but i don't buy that at all. stress can't do this can it?
what about stones in the bile duct or something? i had my gallbladder out in 87. could i still have problems? what about sphincter of oddi dysfunction? one doc suggested it but never did anything.
i feel like i wasted 20 years with a gastro who only kept saying "now we don't consider the pancreas, it's ibs" and then told my husband i was a drug seeker who needed psychiatric care and lots of attention. bull____
also, what abx cause pancreatitus? i know flagyl is real hard on you and so is ceftin and cipro but i've only been on biaxin most of the time and flagyl.
i am so scared.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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James1979
Unregistered
posted
Have you been to a naturopath chiropractor yet?
posted
Sorry you are still so miserable. No, I don't think it's ONLY stress either.
For me, just about any abx causes pain in my GB area. I have had a stone in my bile duct and that area still gives me fits.
have you looked into Sphincter Of Odi??
I would ask the GI dr to consider an MRI of the bile duct. It has a name, can't remember. It's not an ordinary MRI. It's done with a special contrast. It may also check the pancreas, not sure.
Hope your new doctor will have some answers for you. Stay calm and eat a liquid diet. (LOW in fats)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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karenl
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Member # 17753
posted
parasites
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randibear
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Member # 11290
posted
parasites??? what do they have to do with this?? duh...
i tried that mini cleanse with the lemon/lyme thing. threw it up. too much oil for me i guess.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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karenl
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posted
They are damaging all of your organs, this is why you have trouble in all areas. The gallbladder, the pancreas, your bowels .... I remember you even had bladder issues...
You need a plan and go very slow as you are extremely sick. The lemon was a liver cleanse for flukes? Not now,it is not for sick people.
Remember the strong reaction you had to parastroy - so you know the reason. It will get worse. And you cannot have surgery while you are so sick. You herxed like crazy to antiparasitic herbs - so what is your disease? And what can help?
Posts: 1834 | From US | Registered: Oct 2008
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scorpiogirl
Frequent Contributor (1K+ posts)
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posted
Hi,
I cannot believe you're still in so much pain you poor thing!! That's awful!
But if I were in your shoes, I would stop everything and seek a Naturopath to help you detox for at least 30 days. Regardless, of what the underlying problem is detoxing can only help! I hope you feel better soon!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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Rumigirl
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Member # 15091
posted
Randi, have you BEGGED the dr's sec'y to fit you in sooner, as it is an emergency?? And asked to be put on the cancellation list? If you're put on the cancellation list, call every day or every other day to check. But first beg to be fit in sooner.
The MRI someone mentioned is an MRCP.
And YES to the castor oil packs!
It could be a stone in a bile duct. Or sphincter of Oddi?
Posts: 3792 | From around | Registered: Mar 2008
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randibear
Honored Contributor (10K+ posts)
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posted
yep, am on the to be called list. can't get in sooner than 12 on wednesday.
yeah the test is the mrcp which is what i want. hopefully he will give it to me.
i got out my paperwork and i had a colonscopy done in 2010 and an eus in 2006. nothing done since then.
i'm thinking sod or something. am on water or clear broth only now.
well at least i'll loose weight!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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karenl
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posted
When I did the castor oil pack it got extremely worse, so I would be very careful with castor oil in emergency situations.
Posts: 1834 | From US | Registered: Oct 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i think i'm better off just doing the water thing right now.
i don't want to end up in the er again!! bestt to be safe than sorry right now.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Randi, it can be sludge or a stone in the bilary tree..Even after you have your gallbladder out as the stones and sludge are still made from the liver. Also could be a stone or slude in the pancreatic duct which is NOT good. I am assuming they did an ultrasound on all the bilary tree??? A MRCP is what you may need...that is the MRI one...DO NOT do the ERCP where they go in and do it with the camera as that has a high occurrence of pancreatic complications.
Sphincter of Oddi could also be the issue. Tat is not fun either. I use a myofascial PT that manipulates all of that when it seems to get stuck and it works. Did they see anything on the ultrasound especially sludge??? When I feel it starting i take choline and beet pills. Choline breaks down the fat and beet breaks down the bile. I also use the old drug Belladonna for the spasms. That is the only med that works for me ..all the newer ones do not. I only use it when spasms get really bad...not very often...Praying for you
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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This does sound very serious. May I ask why you are waiting for the doctor's appointment? Why don't you find out where that doctor has hospital priviliges and go to the ER there to have all the test done right away? Then you can call his office and maybe he can be the one to see you when he does his rounds? I wouldn't wait for an office appointment - he can't do anything for you then but order tests that you are going to have to wait for.
Whenever my husband gets pain like that we go straight to the ER to have the levels checked, that's nothing to mess around with.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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randibear
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Member # 11290
posted
I've had an mrcp way back when,can't remember. everything was normal. all ct scans, normal. eus normal, yada yada yada. but the attacks keep coming and each one is worse. this last one has lasted three weeks now. the pain is not nearly as bad as it was in the beginning. man, it was a definite 8, now it's only an annoying 2-4.
they gave me two drugs for spasms, one parafon forte and the other levsin. have you heard of those?
the nexium is not doing anything i don't think, but i'm not burping as much and don't have as much gas so who knows.
yeah, even my sister said never do that ercp unless your life is in danger. over 30 percent get severe life threatening pancreatitus and have to be hospitalized. nope, ain't doing that.
all my levels were normal at the hospital and the ct scan and x-ray were normal also. bloodwork, etc., all normal. they won't do the mrcp or more involved testing in the er, not with a diagnosis of "undetermined upper abdominal pain".
i've been doubled over in pain at the er and they still won't do those tests.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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quote:Originally posted by randibear: because i don't vomit and have no fever and my enzyme levels don't go up, the doctors say it can't be pancreatitus.
4 times my husband had pancreatitis his amalase and lypase levels were absolutely elevated, otherwise it's not the pancreas, but he only vomited a few times and never had a fever.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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randibear
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posted
yeah sandy, as soon as they see that all the bloodwork is NORMAL, they go "uh huh, psychiatric drug seeker who needs attention, and overweight depressed large boobed white woman".....LOL
the reason i say that is because one ER "duck" and i use the term loosely, told me that my breasts were too large and they were "sitting" on my abdomen causing the pain...
uh, yeah, right.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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We were sent outta the hospital also with them having no clue whatsoever what was causing the abdominal pain.
Now I understand where you are at. In my experience gastro doctors are the most Lyme clueless of all specialists.
I don't have any other ideas. Maybe the others are right about the cleanse. What about your LLMD? Can they help at all?
I always think it has to do with the inflammation.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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randibear
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posted
like i said i was in so much pain one time they gave me a morphine drip. hubs said i was in the middle of a sentence then all of a sudden lights out, i mean that fast. one minute i was here, the next gone. i didn't come to for TWO DAYS....he brought me home, put me to bed, checked on me periodically and i still out. he even called back and said "hey she's still out" and they told him considering the pain i was in and the fact i had no sleep for several days, i was just catching up and i'd wake up when i was good and ready.
i've had probably oh, let's see, 8 at least visits to the er, been given everything from that morphine to demoral, etc for pain, but the dang levels are ALWAYS normal.
i've had doctors press on my abdomin and i literally came off the bed grabbing their hands yelling. still normal. have done ct scans with and without contrast, still normal.
and i've been to two different hospitals and seen tons of er docs and nurses.
ah, well, "think horses not zebras". one doctor even called me "his little zebra"...because he couldn't figure out what was wrong.
maybe i am nuts...
my lyme doctor was the one in denton who went out of practice, so i don't have one. nobody in texas believes in lyme.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Gotta be stones.. Somewhere there are stones or sludge - in the bile duct? Which abx are you currently on? My husband is starting off now on bicillin which has virtually no gastro side effects.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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randibear
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posted
have no gallbladder, out in 87. not on anything except bp meds and elavil 10 at night. so can't be meds.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Have you treated for Babesia? Maybe it is coming from the Spleen area.
Before I found out I had Lyme and co., I had every GI test done known to man. I was told that I probably had pancreatic cancer (I didn't). After endoscopic ultrasound, I had severe pain to the left of belly button (very specific place). This has gone on for some time.
I am currently treating babs. I think it is helping the pain on my left side.
just a thought.
I hope things get better.
keep us posted.
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Razzle
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When I had gallstones, elavil was the absolute worst thing for me...it would bring on an attack faster and more severe than anything else. I don't know why. And I was only on 10mg of the elavil, for chronic pain in my foot (which it did nothing for except make it worse). I have not tried the elavil since, but then I no longer have chronic pain either.
But I now have to wonder if the elavil is aggravating the sphincter of oddi or causing spasms in the biliary tree somehow? Levsin, Bentyl, Dicyclomine, etc. are smooth muscle relaxers that may help if this is the case. Benadryl is another smooth muscle relaxer that may help if you can't get an rx for one of the others.
Anyway, when my Mom had pancreatitis, she had no pain, no elevated enzyme levels, and no fever. Her symptoms were severe exhaustion and nausea so bad she didn't want to even think about food. She said what helped her most was getting IV nutrition support from a local integrative physician. They started her out with a low dose/concentration of nutrients (I think it was multivitamins/minerals only, but not certain if it had anything else in it), and increased it by a little bit each time she went in for another infusion.
Hoping you feel better soon,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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quote:Originally posted by Razzle: [QB] When I had gallstones, elavil was the absolute worst thing for me...it would bring on an attack faster and more severe than anything else. I don't know why. And I was only on 10mg of the elavil, for chronic pain in my foot (which it did nothing for except make it worse). I have not tried the elavil since, but then I no longer have chronic pain either.
But I now have to wonder if the elavil is aggravating the sphincter of oddi or causing spasms in the biliary tree somehow?
That concerns ME .. I take trazodone and have similar problems. I wonder if it makes things worse for me?? It's another tricyclic.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I think you have parasites, too, randibear... The regular doctors will never tell you this. They don't know how to treat them or anything about them.
The only wany out, is through - sometimes. Sorry you are so ill. The parasite detox is not easy.
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I totally agree with Karen and sparkle about the parasites. Don't know what to tell you about how to get rid of them easily, because like sparkle said the detox is not easy.
I have had the rush me to the hospital with severe pain, projectile vomiting and diarrhea, and have been given IV morphine.
The only thing that worked to get past this was getting rid of the parasites. Parasites are known to cause severe pain. Maybe a Naturopathic Doctor could help you.
Sorry you are suffering so much.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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