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» LymeNet Flash » Questions and Discussion » Medical Questions » Gut Issues with Lyme?

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Author Topic: Gut Issues with Lyme?
Garz
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My partner and I both have
-discomfort,
-bloating,
-intolerance to carbs in particular
(flour, baked goods, grains, breads - starchy
veg, but have to go carefully on all vegetables)
-intolerance to probiotics or prebiotic foods
-undigested food in stool
-constant churning sensation and noises
-pain after bowel movements


Do you suffer similar symptoms?
please share your experiences.

what symptoms do you have?

and

what have you tried that helps?

Posts: 41 | From UK | Registered: Feb 2020  |  IP: Logged | Report this post to a Moderator
Robin123
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My gut symptoms are different. If you want, you could contact gut experts like Donna Gates, Jill Carnahan, and Josh Axe to check on symptoms and diet changes.
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Lymetoo
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Those are good experts that Robin told you about. Could be candida, could be other things.

I would try TINY amounts of LOW histamine probiotics until you are able to tolerate them.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Garz
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thank you for the info.

I am pretty sure it's just inflammation and leaky gut from Lyme directly or potentially a co-infection like Bart - that is known to affect the gut in some people.

I have already adapted my diet considerably (a strict whole food paleo ketogenic diet) and seen significant improvements ( my partner started going running again within 4 days! i had significant improvement also - but not quite as radical ) - but i'm still concerned that it could be holding me back from making a full recovery.

I have had every functional gut test under the sun and whilst it is clear there is inflammation - there is no definition of the actual cause.

so I was hoping others here had had some success with treating/resolving Lyme induced gut issues through trial and error, diet, supplements or something else and could pass that on.

I have tried many things - so far the low carb approach is the only thing that has helped significantly.

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Robin123
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Undigested food indicates leaky gut issues. Sayer Ji has a section on leaky gut and healing it on his website - www.greenmedinfo.com

The gut experts I mentioned above will also have good info.

Our gut lining is only one cell thick - it can be disrupted easily. So we need to learn what disrupts it and what heals it. Pretty simple info, actually.

Posts: 12892 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Garz
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quote:
Originally posted by Robin123:
Undigested food indicates leaky gut issues. Sayer Ji has a section on leaky gut and healing it on his website - www.greenmedinfo.com

The gut experts I mentioned above will also have good info.

Our gut lining is only one cell thick - it can be disrupted easily. So we need to learn what disrupts it and what heals it. Pretty simple info, actually.

thanks, Robin - yep 100% understand.

in fact, we have gone through the whole gamut of leaky gut treatments - some help a little - keto diet helps the most - but nothing seems to actually resolve it while lyme is still there.

so leaky gut caused by a simple gut parasite that can be wiped out with a short course of Flagyl (or strong herbs) or a food allergy to a food that can be removed may be simple enough.

where it is driven by an ongoing lyme infection that breaks down collagen and elastin in the gut lining making it hyper permeable and releases lots of proinflammatory chemicals while messing with our immune system seems to be an altogether different story.

I understand this is a known phenomenon in the functional medicine world - to the point where Lyme is suspected if most leaky gut treatments fail.

will have a read of the site you linked to in case there is anything new - but have been reading and experimenting down this route for 5years now so I have covered most of what's out there published online already.

I thought/hoped perhaps there were people here with leaky gut AND Lyme that had found things that had helped them - so something anecdotal - but from the same group would be more applicable than the general leaky gut literature.

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Brussels
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Have you tried the Medical Medium diet tips?
I had SEVERAL food allergies and so had my daughter, since birth. Lyme made it MUCH worse.
When lyme went dormant, our food and other allergies got better, but not cured.

With the years WITHOUT lyme, the allergies SLOWLY increased.
During lyme, they just skyrocketed very fast, but even without, we still had more and more allergies to the point I started fearing for my life (because I'm EXTREMELY thin already, and these food allergies were creating more problems, as I could barely eat any fruit anymore).

I tried keto just briefly, it felt like DYING to me, literally. Big red alarm, I escaped from it rather fast.

I had done fasting many times, and keto felt dangerous to me, while fasting always helped....

I decided to try Anthony William (the medical medium) diet just to see, for 1 month. That means lots of fruits, veggies, but almost no fat, no protein, so pretty much the opposite of keto.

I was sincerely afraid, because I also cut all the foods Anthony says cause inflammation, such as eggs, dairy, gluten, soy, corn, canola... I cut that all from one day to another.

So I ate like that 1 months, felt fine. By the 2nd month, I could start eating some fruits I couldn't even touch before, as they burned my mouth.

By month 4, I swear, I could eat ALL FRUITS and ALL VEGETABLES, even tomatoes, kiwis, oranges, all apples, pomegranates, pineapples, grapes, etc, ALL stuff that would have burned my mouth and gut, and caused me diarrhea.

So I kept going on, and I'm now on month 16! and still not ready to move 'back' to my previous diet...

I'm gaining weight after losing weight for about 5-10 years. Finally. No more food allergy ever since. My daughter is only afraid of eating kiwis, all the rest, she eats (and she was BORN allergic to many things).

My husband has also had food allergies and bad eczema since child. He did not follow us in the diet, so he still has food allergies (tomatoes, all types of oranges, broccoli, cauliflower, many types of peas, many nuts etc).

And his eczema has been so bad that he decided to join us. Only time will tell, if he stays with us in the diet....

Posts: 6099 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
Brussels
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Another thing that changed drastically for my daughter: she had such a strong lack of iron and strong anemia, that the doctor said her life was in danger.

Her blood levels of Ferritin were lower than 3 mcrogramm/ liter, the lab could not find any ferritin!! And we repeated the exam in different countries to check.

The doctor asked her: How come are you still walking?!?

That was before we were on the MM diet.
I gave her daily beefsteaks, barely cooked, best quality I could find, for about 3-4 months. She hated that, but she ate them...

We went back to check her iron levels, and they were WORSE than when we had started with the beefsteak experiment.

She had been taking iron infusions to keep her alive, and after 4 infusions or so, they measured how much iron was in her blood. That's why we knew exactly where she had started, before the beefsteak experiment.

Steaks helped ZERO on her levels of iron. Her levels kept falling down very fast. She needed iron infusions for more months....

We changed strategies: only plant based iron. So I put her on cherries, spinach, juices etc, daily for about 3-4 moths again.

We went back to check her iron levels, and the doctor said she's got MORE than the average, so we had to STOP giving her iron rich plants / fruits!!!

That was an eye opener for me. I mean, about animal proteins, and how she could not absorb ANYTHING from all those steaks!!!

Soon after that, we started on the medical medium diet, just to see, and we're still there!!!

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Brussels
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Dr RAu from Paracelsus clinic has been recommending the almost exact diet Anthony Williams recommends: no egg, no dairy, no gluten, low protein, high in veggies and some fruits. He also recommends to drop the nuts, as most people react badly to them.

He's got about 30 years experience with CHRONICALLY ill patients, and his diet recommendations come from German biological treatments, that were developed by Enderlein, the guy who mostly talked about pleomorphism.

He studied the blood of many people throught the darkfield microscope and could see that after ingesting of dairy products, for example, how the blood developed more 'infections'.

that's where dr Rau based his diet recommendations, anyway.

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lymenotlite
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About the time I was diagnosed with lyme in 2008 I was also diagnosed with blastocystis hominis, the most common intestinal parasite. The test run was a CDSA, comprehensive digestive stool analysis, and the lab was Genova Diagnostics. The drug to get rid of it was alinia.

Now I've been having gut issues for some time and have not been specifically diagnosed but this time I've started using a berberine at 1/2 tsp 3x a day (for 6 weeks) as recommended by Buhner for blastocystis hominis. It's only been five days that I've been using it but my gut is significantly better.

I think I just found Buhner’s recommendation by doing an online search. I’m using golden seal but the other berberines, like Oregon grape, barberry, and phellodendron should work just fine. It has been shown to lower blood sugar, etc.

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Garz
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quote:
Originally posted by Brussels:
Have you tried the Medical Medium diet tips?
I had SEVERAL food allergies and so had my daughter, since birth. Lyme made it MUCH worse.
When lyme went dormant, our food and other allergies got better, but not cured.

thanks for all your input and time taken Brussels.

it is interesting that our experiences are so different.

I was eating a plant rich diet with very little animal fats or meat for most of my life and doing rather well on it.
for example i was in good shape and in my mid 40's I was able to put 200lbs above my head and mountain bike for 4hrs in the hills - so it worked well for me.
I was into sports and from there sports nutrition and had read widely on it in my earlier years and really followed what is considered to be an ideal diet in conventional wisdom.
It was high in fresh vegetables and fruit and low in animal products and processed food. In fact I prepared all meals from scratch, took my own food to work, never skipped meals etc.

Because of this background and the fact it had worked so well for me in the past, i was in fact very reluctant to change it, instead, i was thinking I just had to keep eating what had worked well in the past. But after seeing the changes my partner obtained from changing to a Keto type diet i could no longer see any justification.
what worked well before clearly didn't work well now and through subsequent months and experimentation it became clear that in fact, my overall symptoms went up and down to a fair extent based on what i ate - especially carbs of any sort and then also fibre.
The vegetables i still tolerate reasonably well are non starchy veg like green beans / french beans, olives, celery, asparagus and i can do a small amount of boiled carrot and salad leaves sparingly.
I would like to eat more veg - especially for more fiber - but so long as my gut is so sensitive it is simply counterproductive.
I now think that until I can get to treat the route cause these gut issues will remain and I will have to stick to teh diet that works best in the meantime.

so its interesting to see people have the opposite effect also. although i know i am not the only ne with a vegetable/starch intolerance with lyme.

for instance, I saw George W. Bush had/has Lyme disease and he is on record as saying that he can no longer eat vegetables - and that his father is the same...
I have read similar accounts of lyme sufferers in forums etc.
also, functional health/gut experts are often quoted as saying if you have leaky gut/sibo and do not get batter after treatment - lyme disease is one of the common causes for that ( along with other things like mold and heavy metals etc ).
- but what I haven't seen so much of is what people have found to work for them.
so that what triggered me to write here.

I do appreciate your input even though it is almost the reverse of my own experiences - so thank you for sharing that.

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Garz
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quote:
Originally posted by lymenotlite:
About the time I was diagnosed with lyme in 2008 I was also diagnosed with blastocystis hominis, the most common intestinal parasite. The test run was a CDSA, comprehensive digestive stool analysis, and the lab was Genova Diagnostics. The drug to get rid of it was alinia.

Now I've been having gut issues for some time and have not been specifically diagnosed but this time I've started using a berberine at 1/2 tsp 3x a day (for 6 weeks) as recommended by Buhner for blastocystis hominis. It's only been five days that I've been using it but my gut is significantly better.

I think I just found Buhner’s recommendation by doing an online search. I’m using golden seal but the other berberines, like Oregon grape, barberry, and phellodendron should work just fine. It has been shown to lower blood sugar, etc.

thank you for that Lymenotlite.

yep - I have been down a similar path.

I too suspected Blastocystis - due to the many gut symptoms and food intolerances.
I also had 2x CDSA tests (comprehensive stool analysis - with parasitology) via Genova both negative for all parasites.

But on reading the lack of sensitivity of the CDSA for blasto and similar I went on to do a GI-Map test which looks for all common gut pathogens via PCR - this looks like a good test that has positive feedback from functional health clinicians and is supposed to be much more sensitive.
But this was also negative for all parasites.
I should add that my partner has the same symptoms and each of the above 3 tests were performed for both my partner and myself on each occasion so in total 6 tests - all negative.
(neither test looks for Lyme or co-infections that can manifest as gut symptoms - eg Bart, Mycoplasma, Babesia, Ehrlichia )
Based on this we had to leave the gut parasite topic as a dead-end and put the time and effort into other things.

we have also both tried berberine containing herbs and have tried many other plant-based medicine approaches.
I find Buhner a particularly sound source of information.
interestingly we both have strong Herx to berberine containing herbs - at anything over about 15 drops 3x a day (or any other anti-bacterial herb for that matter)
but have yet to identify what organism this is really due to - or indeed if it could simply be a downstream effect of a leaky gut/hyperpermeable gut membrane.

ie if the gut is hyper permeable and the immune system already highly activated, then antimicrobial herbs that kill many more gut bacteria would release many more bacterial by products like LPS into the gut and this would cross the overly permeable membrane into the blood and drive further local and systemic inflammation - which would be experienced as "herx".

if there were any way of reliably differentiating from infection and this type of leaky gut mechanism I would be very interested.

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D Bergy
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My first question would be have you had your gallbladder removed? That can cause a lot of problems with or without lyme. Also, what antibiotics have you used?

Should at least eliminate the more obvious things.

Dan

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Garz
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quote:
Originally posted by D Bergy:
My first question would be have you had your gallbladder removed? That can cause a lot of problems with or without lyme. Also, what antibiotics have you used?

Should at least eliminate the more obvious things.

Dan

hi Dan
Gall bladder still intact
can you clarify for me:
when you say "that can cause problems"
do you mean that having it removed can cause problems with or without Lyme
or
do you mean that Lyme disease in general causes issues with the gallbladder?

ref antibiotics
Gut issues were non-existent before I became ill. I could eat just about anything even while traveling and not have any issues. I was not sensitive to any foods.

the sequence of events have been:
-overall health and gut fine
-then mystery illness - with lots of Lyme symptoms including gut issues
-the usual visits to a dozen or so doctors - with no help or useful diagnosis
-attempts to modify diet, lifestyle, natural treatments with some benefits - but still ill
-after 5yrs of illness and finally, a diagnosis (Lyme), started antibiotics to try to resolve
-initially Doxy - marginal improvements after 6 months and initial mild herx
-added Azithromycin (as Bartonella suspected) again some small improvement after initial flare in symptoms
-added rifampicin after further 6 weeks

gut issues slightly better on abx if anything

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D Bergy
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Some people with lyme have had their gallbladder removed and not having one can cause digestive problems.
Since you do have yours that can be ruled out.

Since your problem is mostly carbs that also doesn’t indicate a gallbladder problem.

It is difficult to know where to start. I would try an anti yeast program to start with. Lyme itself causes some digestive problems but this sounds like more than just lyme.

Its going yo be finding what works by eliminating what doesn’t.

Keep us posted.

Dan

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Garz
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quote:
Originally posted by D Bergy:
Some people with lyme have had their gallbladder removed and not having one can cause digestive problems.
Since you do have yours that can be ruled out.

Since your problem is mostly carbs that also doesn’t indicate a gallbladder problem.

It is difficult to know where to start. I would try an anti yeast program to start with. Lyme itself causes some digestive problems but this sounds like more than just lyme.

Its going yo be finding what works by eliminating what doesn’t.

Keep us posted.

Dan

thanks, Dan

actually in the first year or so of illness we both underwent a pretty comprehensive gut protocol for yeast and other possible gut pathogens. followed by a carb free diet and then gradual re-introductions.

felt like hell at the time - like permanent herx - the treatment lasted 12 weeks - at which point we decided it either wasn't a gut pathogen - or it was but the treatment wasn't going to work and so we stopped

we both had some mild improvements when we finally stopped - and were essentially eating a keto type diet(although we didnt know thats what it was called then) for the first few weeks until we gradually re-introduced things.

looking back it could just be that the low carb few weeks were what made us feel better - as we now know our symptoms go up and down with how many carbs we eat.

we did a great plains OAT test before and about a month after( its an interesting test if you havnt come across it - measures metabolites of your bodies processes in your urine - but includes metabolites o gut organisms too so you can see if there are imbalances yeast etc)

- the before showed a few bacterial imbalances in the gut and some mildly elevated yeast organisms by-products - but nothing drastic
the after one showed both the bacterial and yeast metabolites had returned to normal.
but we still felt like crap.

the upshot is i don't think its yeast ( also 2 years strict keto with v low carbs would tend to argue against ongoing yeast being a big issue - i think)

I am thinking either Bart infecting gut epithelial cells - causing chronic inflammation ( it does do this in some cases ) - or maybe a chronic gut virus ( it is a thing) - like echo virus or other enterovirus

wish there was a way to tell exactly what ....

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