Anyone Have Both Crohn's and Lyme?

I know that Lyme predisposes us to autoimmune illness, so I'm sure someone here has both Crohn's disease (or another form of irritable bowel disease) as well as Lyme. But I know many of us have GI symptoms from Lyme that are not autoimmune in nature, so I am hoping someone can weigh in for me.

How did you differentiate the two? Is it really possible to differentiate the two?

Has anyone resolved the bowel disease just with Lyme treatment? I know many of the remedies and diets that people use to treat leaky gut and other common Lyme issues can help folks with Crohn's disease reach remission as well.

I know that there's no cure for Crohn's disease, but we've all heard of people putting autoimmune conditions into remission with just Lyme treatment, so it seems worth exploring.

as per above - colonoscopy is the gold standard - but even then they have to rule out bacterial infections first
also - colonoscopies frequently fail to travel up through the lower intestines more than a few feet and Crohns can affect any part of the GI tract from mouth to anus - so will not necessarily detect it ( UC is mainly in the colon so it will find that )

i am not sure if when they do that they are even looking for thinks known to cause GI distress in the Lyme world - eg v small bacteria like Bartonella, mycoplasma, chlamydia.

the other diagnostic tests that are indicative - are some of the inflammation markers they test in stool tests
calprotectin, IgA, lactoferrin
there are thresholds known for these markers that are indicative of IBD if results are outside the threshold
you can get these done as part of the comprehensive stool analysis from people like genova
they will also test for blood in stool and mucous.

symptoms wise
most people with GI issue with Lyme have some ongoing inflammation and discomfort after eating, bloating etc
its typically manageable with dietary changes but uncomfortable

people with IBD (Crohn's or Ulcerative Colitis ) typically have a lot of pain - often in remitting relapsing bouts - - severe diarrhea - blood and mucus in stool - and is associated with sudden weight loss

i had all of the above tests done and they failed to find any explanation of my GI symptoms - my conclusions based on a great deal of research and trial and error is it's driven by Lyme and coinfections - but the inflammation markers were short of those normally seen in IBD

Thanks, folks. I'm trying to figure out what's going on with me. I was suspecting Crohn's in my upper small intestine. I had an episode of GI symptoms like this last year, and nothing remarkable was found on an upper endoscopy, Genova comprehensive stool test, or ultrasound. Regular blood work showed sky-high eosinophils. It went away with the addition of cromolyn sodium (a mast cell stabilizer), so it was chalked up to MCAS.

Now the pain is back, though, and the cromolyn sodium isn't helping. I'm wondering if I have SIBO that inflamed my bile duct. Very mild nausea and pale stools for three weeks, then a day of diarrhea, then general abdominal pain for a couple of days, and now the awful upper-middle abdomen inflammation. Just trying to unravel the mysteries....

I have had gall stones - if you can describe the pain I should be able to recognize it - its quite distinctive
what kind of pain

constant or only at certain times ?

if so what times ?

where exactly is it located?

what happens if you press on that region

sounds very much like gall stones or maybe sludge in the bile to me Sara

especially the pale stools, pain after eating, the position under ribs slightly to the right of the sternum is spot on = and the throbbing, pulsing type pain.

when mine was severe and i had full-on gall bladder attacks - it was like someone was trying to pump up my internal organs with a foot pump!! - waves of increasing pain - nauseating - ended up in A&E

that is the classic manifestation, but it can be variable. these days if I get a reoccurrence - it is not so much after food - but more like all the time - esp in the early hours of the morning - but much milder - but still uncomfortable - just not excruciating.

It's an odd condition - i didn't realize when it first happened to me that it is now thought to be an autoimmune condition so fits with Lyme etc.also related to altered liver function - which again occurs in Lyme.

also, gall stones if not calcified do not tend to show up on the ultrasound -I was in excruciating pain and rushed to A&E and only has a couple of tiny flecks visible.

ref risk factors - I was a fit 40year old male - not overweight -good diet - zero risk factors - doctors couldn't care less what caused it. they are just so used to scheduling surgery to have it removed.

basically, the gall bladders is a closed muscular lined sack about the size of a small pear that lives just under the ribs slightly to the RH side of centre.
i job is to store bile from the liver - as the liver makes bile continuously but the body needs it in doses to digest meals - especially fatty meals - so its stored in the gall bladder until needed and then squirted in after the body senses the contents of the stomach have just emptied into the small intestine.

if there is sludge or stones in the gall bladder (or maybe if it's just inflamed) these can stop the gall bladder from emptying - and this is where the problems begin, as it will continue to try to contract causing pain. sometimes there is referred pain in the neck, right shoulder or arm.

it doesn't always cause acute attacks though - once irritated it can remain inflamed and niggle.

mine is doing this at the moment niggling pain in the day and wakes me up in the early hours

bart can also infect the gall bladder itself

liver flushes have helped me - but can take a few attempts when it is in this niggle mode

sometimes when mine is like this it is actually a little better just after food but gives more discomfort as it gets nearer the time of my next meal.

sometimes i could stave off an attack by drinking a glass of hot water with lemon, ginger, apple cider vinegar, and around 5-10g of Epsom salts in it - if i drank that early enough - tastes foul - but was way better than the full-on attack.

but I have not tried it when it was in niggle mode - the epsom salts help to dilate the bile ducts - so eases the blockage - which is why i say it may not work when it is in niggle mode as that doesn't feel like the same thing.

i cant diagnose it obviously - just sharing what i know in case any of it strikes a cord.

Thanks for sharing your experience, Garzie. I have been looking into gallstones today.

My current theory is that I have a gallstone causing a bile duct blockage to my liver. Last year (in this theory) I had a gallstone blocking my gallbladder duct, which is why the pain only occurred after eating, whereas this year the pain is more constant. (The gallbladder only squeezes out bile after meals, whereas the liver works more continuously, as I understand it.)

Looking at the mainstream medical websites, they make it seem like surgery is the only real treatment option, but plenty of other websites are filled with people who kept their gallbladders and manage the symptoms. I'd love to hear more about non-surgical treatment.

How big a risk is a blockage? Would you consider having yours removed? Does it feel dangerous to you at times, or is it more of a pesky condition to manage? Apparently in the U.S. 10-15% of people have gallstones, and while I know not all of them are symptomatic, surely they manage to live their lives without surgery sometimes, and they don't seem to be dying of burst gallbladders very often.

So you were diagnosed via ultrasound, but only because you had some tiny flecks that were sufficiently hard and visible. Is there another method of diagnosis? From what I can find online, ultrasound seems to be the best bet (and I love ultrasounds because they are non-invasive and don't require nefarious contrast agents!).

I had a comprehensive metabolic panel run today, but not a full liver function test. My primary care doctor (the only doctor I could get an appointment with so far) seemed overwhelmed and not concerned. I see my LLMD tomorrow and a GI specialist next week, both of whom I assume will be more helpful.

Also, I see now that my doctor was super wrong about gallstones not going away on their own. Surely people pass them, right? So of course I could have had multiple gallstone episodes in my life.

Okay, so! The connection to Lyme is the altered hormones, altered liver function, infections themselves? Can SIBO or other digestive issues play a role?

Isn't it great how much we get to learn about our bodies? ;)

Hi Sara
i cant definitively say what the constant nagging pain is, it may be a blocked bile duct with a stone but suspect that would escalate rapidly over a few days if it were - that condition can be dangerous and they like to operate pretty swiftly.

i suspect the cause is something less dramatic. certainly, I have had these incidents several times - about twice wheel doing the initial series of flushes 7-8 years ago now sometimes just occurring in between flushes at random - once after a flush and lasting until I could do another one.

remember its an auto-immune disease at its root - so can flare at any time( stress could trigger mine - eg a high-stress work trip could trigger it while I was in some far-flung place)

also, it is targeted at your body's tissues - so the entire region may simply be inflamed or irritated - rather than a pure plumbing problem. this in itself may be the source of the pain rather than a blockage. if you google images of removed gall bladders you will see some pretty nasty and repugnant inflamed tissues (PLEASE NOTE: i do not advise this if you are squeamish or a bit of a worrier).

gallstones are very common - but not everyone who has them has gall bladder attacks - so its clear there are some other factors involved. it may simply be that anything auto-immune get ramped up in lyme/co-inf - or it could be related to SIBO and indirectly to lyme - some kind of colonization by the wrong bacteria from the digestive tract ( there are bacteria in the colon that can eat bile as food - and in SIBO bacteria from the colon are present in the small intestine - which the gall bladder is connected to)

since i finished the initial series i have been able to eat fats - just had what i consider occasional minor ( at least compared to the initial full-on attacks ) episodes akin to those you describe every couple of years - but so far flushes have also sorted that.

the last two of these have been during increases in dosage of herbs to treat Bart - and have also been accompanied by improvements in overall health - which i find interesting

the people that advise the flushes do say a maintenance schedule of 1 per 6 months is advisable - but life was super busy and i rarely did that.

ref dangers of gall bladder disease in general - without treatment it typically tends to get worse - and can lead to more complications - but most people get something done before that as the pain gets pretty high on the scale.

ref dangers of flushes - i looked into this in some detail - back in time when i started this there was a website with lots of info on liver flushing and it had a pretty impressive poll with i think 10,000 or so respondents - the numbers were pretty emphatic - almost no one had any severe complications from flushes - something like 90% had benefits. most complete relief after doing a series of them. it seems like the epsom salts are the key to dilating the pips and preventing blockages - some remarkable photos of broad bean sized objects people have passed!!

the liver function tests could be useful as bart and lyme sometime cause infected abscesses to form in the liver - again sorry if you are a worrier - but liver enzyme tests would help rule that out
some mildly raised levels can accompany gall bladder issues - but the pattern of these can assist the differentiation.

i think in your shoes - i would like another ultrasound to see if they can see anything and defo a Liver function test
in the meantime, if it were me, and i needed to try something for relief, i would not be averse to trying a liver flush again - actually i did one the other day and got some relief - but think i need to do another in about a week - as its been so long since i have done them it may take a few goes.

OK - that's pretty much my brain dump

hope you get some relief

hi Sara - I will find detailed instructions on the flushes that I used and post it below

i consider myself cured of gall bladder attacks by the flush method - I am confident that if I did any maintenance flushes as you are supposed to with this approach - one per year at least i don't think i would even have the niggles I have now.

in my case I'm pretty sure it's all driven by lyme and co-infections in the end - and once that's dealt with i think it will resolve - but as long as i have lyme i will likely have these niggles - they are not full-on attacks though - those are way different.

i will try to find the site that offered details and discussion and a large survey of people trying it.

it was a bit f a crappy site and like a lot of forums - there were some unfounded claims etc ( eg Liver flushing is the cure for all illnesses ) but if you filter out all the nonsense there was some useful info there. it also tallied with other folk remedies i had come across in my research.

the safety record was very good - only a very small number of people had serious issues out of thousands. i read that as very good indeed ( given that the classically trained medical people tell you you will likely get a stone stuck and die ) -

and was way less than i would have expected of even a complete harmless placebo treatment by my reasoning - ie if you told 1000 internet forum people to take a new miracle cure( eg sugar cubes ) to "cure them of all ills" .I would expect around 5-10% to claim dreadful reactions of some sort!

here is the link to the bit crappy site
https://www.curezone.org/cleanse/liver/huldas_recipe.asp

the flush recipe and instructions are on that first page if you scroll down

after the first ones found the apple juice and other things were not really needed
so I just used the basic ingredients of Epsom salts, grapefruit juice, and good organic olive oil.

there is also a link to the survey results there
https://www.curezone.org/faq/p/r.asp?a=28,571,2826&s=21&u=1

it wasn't quite as large as i recall - but still overwhelmingly positive