My husband was diagnosed 12/08 with Lyme and Erlichiosis (sick for 2 years prior). Following treatment with antibiotics (several different ones over 14 months) and 4 LLMD's - he has had 4 episodes of pancreatitis, was hospitalized 5 days for each one, most recent 2 weeks ago.
No doctor can explain why he is getting pancreatitis, not Mayo Clinic, Columbia Presbyterian, etc. Their "suspicion" is that it's the antibiotics, but it is very rare for that to happen.
By change is there anyone out there that has any knowledge of this? We are between a rock and a hard place now.. cannot treat the lyme with abx if more attacks of pancreatitis are in store.. then we are looking at diabetes, pancreas damage, etc.
Thanks!
Posted by jenn (Member # 21687) on :
could diet be cause of pancreatitis? high fat diet could cause flares.hope this helps.
Posted by glm1111 (Member # 16556) on :
Ask the docs to check him for parasites/worms. They can play a MAJOR role in lyme disease. The Ova & Parasite tests are usually inaccurate tho, but you can try. PLEASE don't ignore this. Check the symptom list for parasites at
I have had these come out of me after treatment with antiparasitics. I was also hospitalized for pancreatitis several times in the past.
Gael
Posted by FuzzySlippers (Member # 13658) on :
sandy,
Sometimes undiagnosed gallbladder problems can lead to pancreatitis. Lyme Disease is known to affect the gallbladder in a big way.
Sometimes it takes a fair amount of testing to discover gallbladder problems. That is, just one sonogram or one HIDA scan of the gallbladder might not be enough to diagnose gallbladder disease. Sometimes even more testing is needed.
It's not uncommon for more invasive testing to be necessary to diagnose gallstones, or inflammation, etc., in the bile ducts. All of these issues can lead to pancreatitis problems in some patients.
Some Lyme doctors have even theorized that since Lyme is known to affect the gallbladder so much, that gallbladder issues that occur with antibiotic treatment for Lyme, "could" be a result of herxheimer reactions.
Anyway, this might not be applicable at all to your husband's situation. I'm just mentioning this in case it might be helpful.
Posted by Keebler (Member # 12673) on :
- Leptospirosis (another spirochetal infection) can cause severe pancreatitis. Symptoms of leptospirosis mirror those of lyme.
The 14 months of tx for lyme and ehrlichia may have covered that but, still, it's a possibility that your husband might ask about the next time he sees his LLMD.
pancreatitis, leptospirosis - 33 abstracts -
Posted by METALLlC BLUE (Member # 6628) on :
This is a far out hypothesis, but could his Pancreas be his weak spot and that during Herxheimer reactions that specific bodypart flares up?
I'm probably wrong, but just throwing it out there.
Posted by Keebler (Member # 12673) on :
- Metallic Blue's thought is valid. So is Gael's. It could be a combination of things and the pancrease is just overwhelmed. All the comments above are valid considerations.
Has your husband been on supportive supplements such as Milk Thistle, etc. ? Is there an ILADS-educated LL ND (naturopathic doctor) around who could help with the support part of this?
That would help his body be able to handle both medicines and the herxheimer/die off reactions and toxicity overload.
Also, lyme affects all organs. Mayo, by the way, is clueless about lyme and the damage it can cause. Mayo has failed many a lyme patient.
================
From: The One Earth Herbal Sourcebook (Tillotson, et.al.)
Treatment of Gallstones with Chinese Herbs and Acupuncture
Excerpt:
. . . This blockage can lead to pancreatitis, which potentially develops into a life threatening condition. . . . -
Posted by METALLlC BLUE (Member # 6628) on :
Also, if antibiotics end up being a no-go, there are other therapies that work which would not cause this problem, assuming it's not Herxheimer related.
Posted by Keebler (Member # 12673) on :
- Yes. If you want a list of complementary protocols, just say so. Also, your husband may consider a rife machine. Supportive therapy would still be good with that but some of that is basic good self-care and nutrition. -
Posted by sandyk (Member # 17959) on :
Thanks everyone...
I failed to mention here.. they did take his gall bladder out on last week.
We started treatment with Dr. H in NY 2 weeks prior to the 4th episode, we have 56 pills per day ABX and supplements.. including milk thisle, etc.
I am going to look into the suggestions here - thank you again...
It is the ONLY regular supplement we took prior to each attack. All ABX were changed up, etc. so... this may very well be the case.
Although the "expert" at Columbia Presbyterian in NYC says that yes, that is a possibility, she has no more information on it.
I am feeling like we may be one of the RARE cases..
My husband is so into traditional medicine.. I have my work cut out for me now..
May need to go the Cowden route....
Posted by sandyk (Member # 17959) on :
... the gall bladder was taken out because there was sludge and since it was the 4th attack - they thought it best just "in case" it was the cause - I think not.
Posted by Keebler (Member # 12673) on :
- If liver support is not on board during lyme treatment, it's going to be a very rough ride.
Will he not even consider milk thistle?
Probiotics, too, are essential. I'd not drop them from one article's stance. Some brands are better than others but probiotics are vital to our existence. Actually, getting probiotics from food may be ideal. Miso soup, sauerkraut, Kimchi (kimchee) . . . unsweetened yogurts, etc.
When abx destroy the natural probiotics in our gut, we have to replace them somehow. Probiotics help our immune system, colon health, etc. -
Posted by sandyk (Member # 17959) on :
Herx reaction could be possible for the first 2 attacks since it following a course of IV Doxy for 3 months + 1 Bactrim, at that time we were taking over the counter acedophilus, nothing else.
Then 6 months later was when the controversy started of whether he actually had Lyme or not (our 3rd LLMD Dr. G, NJ said absolutely not).. we honestly can't remember if he was taking any ABX at that point immediately prior to the 3rd attack. After that attack and Dr. G steering us down a "it's a very serious autoimmune disorder" road.. we went to Mayo to find out what it is, if not Lyme.. found nothing of course. Mainly worried about the pancreatitis at this point -
Then in April, we went to Dr. H in NY, thinking we cannot mess around anymore and need to see "the best doctor".. he clinically diagnosed him with Lyme and started him on the regimen below.. 2 weeks into this another attack, no Herxing was taking place. Again, Mayo or Columbia Presbyterian have no idea why it is happening. Mayo says absolutely not the ABX, while Columbia has the suspicion that it could be the ABX or the probiotic, it is very rare and they just do not know and have no way to find out.
I contacted Dr. H's PA to let her know what was going on and that my husband has stopped all treatment for no until he is healed, she suggested to send us a package with an alternative treatment in the meantime.
Got a box in the mail with 8 bottles and a piece of paper explaining the "limited cowden protocol". I just boxed it back up and returned it because we just don't know if that's the route to go right now.
It's going to be a risk to start again, further attacks will damage the pancreas more and he will be on the road to becoming a diabetic.
We are between a rock and a hard place and I have no idea where to turn...
Dr. H's regimen:
RX: Zithromax 250mg 1 x 2/day Cefdinir 300 mg 1 x 2/day Probenecid 500 mg. 1 x 2/day Ultram 300 mg. 1/day Plauenil 200mg 1 x 2/day Nystatin 2 x 2/day Relafen 750mg 1 x 2/day Supplements: Magnesium malate 500 mg 2 x 2/day MedCaps DPO - 2/day NT Factor - 6/day Silymarin 80 Milk Thistle - 3/day Theralac - 2/day ALAmax CR - 2/day Saccharomycin DF - 2/day Ultra Flor Plus DF - 2/day NAC N-Acetyl Cysteine - 2/day Digestezyme - 3/day
Thanks for any input at all...
Posted by cactus (Member # 7347) on :
I had medication-induced pancreatitis 18 mos ago. Not fun.
All of the above responses are excellent too... but just so you know - I do think it's possible that it was caused initially by meds.
I'm sure you've checked and re-checked the possible side effects of most of his meds.
For me - I have successfully taken both Mepron and Bactrim long term in the past.
But 18 months ago we combined them - and apparently both carry a risk for pancreatitis. It was too much, and I had pancreatitis. Bad experience. Can't imagine going through it 4 times.
It sounds like your husband's first attack happened when he was on Bactrim? Maybe that set this whole thing off?
My understanding is that once you've had pancreatitis, you are more likely to have it again...
What is he doing diet-wise? There are diets that may help to support the pancreas. And supplements.
Not sure this is as helpful as the above, but as someone who's been there... I wanted to share my experience with you.
Sending good energy, Cactus
Posted by ArtistDi (Member # 2297) on :
SandyK,
You can get pancreatitis from antibiotics. I just did from oral Minocycline, and my drug allergist in Boston, felt that was the culprit. She said it can cause it. I never had pancreatitis with iv doxy. Back on.
But, yes, certain antibiotics can cause pancreatitis. Just a heads up.
One more thing--high amylase and lipase readings are also found with Sjogren's Syndrome, so maybe rule that out.
ArtistDi
[ 06-02-2010, 10:51 PM: Message edited by: ArtistDi ]
Posted by Haley (Member # 22008) on :
Wow, with that combination of abx you would think it would hit just about every infection. I was wondering if he has been tested for Strep in the blood but I'm sure those abx would hit Strep.
I'm assuming he has had scans of his Pancreas and the Pancreatic duct.
Thanks for the article. Very interesting.
I hope that your husband is feeling better.
Posted by Marnie (Member # 773) on :
TNF alpha and IL1 B...inflammation = pancreatitis.
Watch very very closely for cancer...man...prostate...woman...breast.
It was a very early warning sign in my sister - in - law. Pancreatitis - breast cancer (caught in time...thank goodness).