Severe upper GI and stomach cramping all around torso—painful kidneys, projectile vomiting

Thank God that I don't, it sounds awful :-(

I do have many digestive issues and one that relates to your description is that after I eat red meat my digestive system seems to slow or stop for a day. I get this heaviness in my stomach which keeps me up at night because every time that I turn I feel like a bowling ball inside me moves around. This causes pain and discomfort. I then get cramps in the anal area that makes me want to go to the bathroom but nothing comes out because it seems like everything came to a halt.

However, it never gets to the pain level that you explained so I don't think it is the same. Eventually, it starts to move again and then when I empty, the feces is very hard and solid.

I think that I may have a bile situation. On my list of things to do is to add digestive enzymes to my diet.

Now a question for you (well, a few actually), do you think that your bile ducts may have cleared and that is why it stopped, yet somehow they got clogged up again and thus why your most recent symptoms?

Because you are able to expel the contents probably means that they sit in your stomach and are not passed on to your duodenum or intestines. So is it possible that some type of a hernia might be preventing the food from going through and this is causing the pain?

Have you had an x-ray done when you get like this? I assume that if so, then nothing was found, otherwise you would know what the issue is, right?

Gastroparesis symptom is vomiting undigested food hours after eating it, and it can be projectile (because of the stomach not emptying the normal way). Bartonella/Lyme can cause this. Gastroparesis does not always show up on the regular gastric emptying test, but that does not mean that you don't have it.

Here's what I think may be happening (hypothesis, based on my own situation):

Low BH4 has been found to be a cause of Gastroparesis (PubMed.gov research).

BH4 is used in the body to detoxify ammonia.

Ammonia is one toxin given off by Lyme (and probably Bartonella, given the neurological issues Bart. can cause).

When the BH4 is depleted to a certain point, this allows ammonia to accumulate.

And the low BH4 plus more Ammonia = symptoms.

Purging (vomiting) may be how the body gets rid of the excess ammonia, since it can't do it the usual way (by converting ammonia into urea & excreting it out through urination).

Have you tried a low-protein diet for more than a few days? Protein containing foods contribute to the body's ammonia load, since amino acids (proteins) contain nitrogen, and nitrogen is one component of ammonia (chemical formula is NH4 - that's one nitrogen atom bonded to 4 hydrogen atoms).

Alternatively, have you tried taking Yucca Root when you eat protein-containing foods? Yucca Root seems to reduce ammonia (at least, it does for me...my sweat does not stink like cat pee when I take Yucca Root).

You may also need to do magnesium/charcoal ammonia flushes periodically to mop up the ammonia missed by the Yucca Root.

Thanks everyone—

My LLMD suggested I see a gastroenterologist and I'd made an appt (very reluctantly, because at the time, I hadn't yet realized that even though sx are associated with lyme or bart—they are still system breakdowns. I'm probably not articulating that well - but for awhile there I thought everything was to be solved by eradicating the infection. Now, I think it's important to treat the disease as well as try to deal with some of the system breakdowns individually.) But cancelled it when the episodes stopped.

So, I think you're right - I need to get to a gastro. But I don't know when or how to do that. During these episodes, I can't function —plus it's always in the middle of the night. It might be worth it to get to the ER during an episode but I may need an ambulance to get there. I'm so out of it when the episodes occur I forget that I really need to be evaluated as they are happening. I guess the important thing is to see someone and get some x-rays done. When I was 7 I had a double inguinal hernia but did not think that this might be a hernia. Will inquire about that.

LLMD had me doing CBC and other lab work on a monthly basis and now I'm doing it on a bi-wkly basis since getting the IV installed. Everything is fairly normal. But I do need to let the LLMD know the episodes have started up again.

Regarding animal protein. I have wondered about ammonia. Last I had it checked it was OK—and I was not having these episodes. However, this is strange—or maybe it isn't I don't know. But I grew up in the midwest so meat + potatoes were our mainstay. But I hated hate hated meat. I would chew and chew and could never swallow it (maybe I choked as a kid or something). Eventually, I became a vegetarian. But eventually, this did not serve me well. I developed major GI problems (different and distinct from these episodes) pop up starting about 6 yrs ago. I would get insanely bloated, gassy, pressure, and a ton of stomach pain whenever I ate. Eventually, I was off solid food entirely—subsisting on soup and juices.

I finally found an ND and we did a lot of food allergy and other testing. I had severe leaky gut and a ton of sensitivities. Started a non- sugar, non-dairy, low carb, high protein diet and had very good results. But had other hormonal and neurotransmitter problems that we could never solve no matter what we did. I spent over $22k with her with little results (of course, she never suspected lyme—neither did I). I moved away and my GI issues along with everything else spiraled downward over the course of 2 yrs and then I finally started lyme tx. But, when I am not feeling well and feel the stomach going haywire, I start eating more chicken and more beef and I instantly feel better. But I'd say in general (with the exception of the crazy episodes) my GI has calmed down a lot.

I also started seeing a nutritionist. He decided my pancreas was not producing bile, so my stomach was not triggered to produce acids, I was having trouble digesting fats, my thyroid, although hypo was going into hyper levels at certain parts of the day, and also wanted to level out my neurotransmitters. His program sounded fantastic—basically high protein, steamed veggies and a salad for lunch and my medicated food powder for breakfast & dinner and protein snacks in-between (not too far from what I was already eating). He added in some fiber pills as well as betaine HCl w/ pepsin, and support for pancreas, and a few other supplements.

HCL w/ pepsin had worked for me before—but the betaine HCl gave me huge migraines. I looked it up and this has happened to other people, too. I'm not sure what to do about it so I stopped taking it but kept taking the other supps he prescribed. But had to stop them too because I was developing too much nausea and I already have enough problems with my appetite. So SOMETHING is screwy.

This is a stretch but there is a possibility that these episodes might tie into when I started taking BW formulas for lyme (AL-Complex), Bart (A-Bart) and Babs (A-Bab). Once I started, the episodes stopped. I stopped taking the herbs a couple months ago (forgot about them, if you can believe that, and then decided not to start up again until I've had my IV port in for 1 month). So I'm going to start taking them again tomorrow so I guess if I don't have another episode 4-5 wks from now, I have my answer.

I love the idea of yucca root—have never tried it but that makes sense, as I really do seem to respond better with higher protein. I often end up with a lot of diarrhea when I take magnesium so I don't think I'm taking it correctly. Not sure what a Mg/charcoal NH3 is?

-p

In between these episodes that occur only every 4-5 weeks I am totally fine (well, relatively speaking—given the complexities of lyme, bart & babs and dealing with insurance companies!!!) before and after these episodes. There was a time when I would get a much milder migrating cramping feeling in my stomach/upper GI for a couple days in a row after eating but it is not a consistent pain.

OK - will look into those flushes.

happyjo—
It's possible the abx are stirring up trouble… I have been associating the episodes with Bart and the Rocephin is for the lyme but it still may be affecting Bart microbes. I just wish I knew for sure.

After thinking about it—I think it's pretty important to get to a gastro and rule out everything else that the medical profession will be more interested in than lyme or bart. Without doing that, no one is going to focus on the likely cause.

-p

Thanks Margaret. I have some bitters in my cabinet that I used last year to treat a fungal infection (but was ineffective). I've also read they're good for parasites. I will also talk w/ my LLMD about S. Boullardii—she and I haven't talked about that.

Agree with the sugar-free diet but the episodes are not associated with any foods. I had them when I was fasting and during cleanses, I've had them when I was eating poorly, I've had them when I was only eating veggies, and they stopped when nothing else changed…

Crazy stuff…

-p

Reglan might help, but I think your issues are a little too extreme for phenergan. I've had no experience with Zofran though.

So you are still going through this even though you've switched to IV abx? I'm so very sorry, P!!

And a question - have you ever tried using some heat on your abdomen just as it starts?

(not to mention… do I REALLY want to take more meds???) I mean, if there aren't alternative, OK. THese episodes are terrifying. But I think my instinct is to get another opinion first. I just really hope this gastro is not another one of "those" MDs… $300 an hr.

-p

Thanks for your input d2gw—

My LLMD does both abx and herbs—depending on the patient's responses. She cites success with both protocols as well as in combination like mine. I wanted to stick with herbs and resisted and resisted abx until I reached maximum doses of the herbs I was taking for lyme and was getting no reaction at all. And looking back, I really pressured my LLMD to "do something" because it had already taken me 6 mos. to get into see her, we'd treated my high viral and fungal load for 4 mos. and she was telling me that I would likely not be able to work (after I'd already been out of a job for almost a year) so I was not able to take jobs and I was out of $—yet my treatment had barely started. So, the pressure was on. I was getting a reaction w/ the Bart and Babs herbs so stuck with them but I am at max. doses so not sure what is next for Bart.

So, we started on abx for lyme—slowly. I'm on lowest abx dose for another couple of wks then we'll start ramping it up and then she was going to add in malarone or mepron for Babs since a) at the time, Babs were my most prominent sx (although that may have shifted to Bart-can't say for sure) and b) she wants to treat for Bart w/ abx but my positive Fry Labs test was likely not positive enough for coverage. But maybe it's time to revisit that approach. So, to answer your question—I'm only taking BW A-Bart for Bart but I'm at a high dose. And I'm hoping that stopping the herbs when I started the abx maybe is why the episodes started up again? We'll see.

I don't know if the herbs are working for the Bart, really, because I cannot separate the sx. There seems to be too much overlap. My only other obvious Bart sx besides the gut palsy is sore arches in my feet and that is 90% gone. I really envy people who can clearly ID sx and know exactly what is causing what. That is surely a benefit.

So—regarding the meds she's prescribing…
I'll take hydration! You bet. But I only vomit at the very end of the episode—maybe a couple of times but a lot of retching too. So no huge chance of dehydration from vomiting. The vomiting is so insanely violent that I am pretty worried about blowing out an eyeball or breaking a rib or dislocating something. Seriously.

I think you're probably right that she doesn't really know why it's happening—none of her other patients have experienced this and so far, I have not found anyone online who has, either. But the bell's palsy fits. So the metoclopromide, which tries to get food moving through the stomach more quickly seems to make sense. I'll try it again.

And I guess the anti-vomiting meds makes sense if the entire process of the cramping and locking up is all because the stomach is trying to vomit something up… but my instincts tell me that is not what is happening to CAUSE the cramping—that the cramping starts when the food is sitting there in my stomach—the stomach and pancreas and upper intestines are not in sync so nothing is moving… then in a last-ditch effort the stomach just says "forget it" and spasms.

I worry that suppressing the vomiting (which is the only relief I get—within minutes I am passed out peacefully) might make it worse.

But—what do I know? I so wish I could find someone else who also has these episodes. In a way, it's good that not many are suffering from it—we have enough going on.

-p

The episodes always start in the middle of the night and go on for hours—usually at least 6 hrs once it was almost 18 hrs. So the passing out is mainly because I didn't get any sleep. But twice I did faint—doc didn't know what to think about that.

I'll probably hold off on any meds for the vomiting and will just wait and talk with her at my next appt. on the 17th. And I think I might also just wait until I see the gastroenterologist. This guy has an interesting background—he practiced gastroenterology for many years and got fed up with the insurance companies not allowing him to actually spend any time with his patients much less treat them effectively. So he became a functional practitioner and has also partnered with my LLMD in some presentations and has some experience with lyme. I hope I hit the jackpot.

You know—your description of your episodes does sound like mold sensitivity. Do you know of Dr Shoemaker of survivingmold.com?

Yes—I will definitely report back once something comes to light…

-p

You haven't noticed these episodes being with specific foods or food groups have you? We know that RMSF can cause a red meat allergy in some. Is it possible it's related to the food or something you drink?

Just a thought.

I would seriously consider changing herbal protocols then! It really sounds like there is something in one of those formulas that seriously doesn't agree with you!!

Here's to you feeling better soon!!!

What a story and horrible situation, Pirouette!!!

I am unable to offer any suggestions but I do extend my deepest hope that you figure this out and are able to put an end to these episodes.

In the meantime, (((BIG HUGS)))