posted
It's been almost a year since I was diagnosed with babesia. I've been unable to handle babesia meds because of increasingly severe GI problems.
In late 2011 I had bicillin injections for 3 months for Lyme & any other TBD that bicillin will hit (was dx'd with Lyme in 2000 & 2006, so it's there). The bicillin produced no results. So everything may be a babesia problem and I've had no treatment for it.
My symptoms support a diagnosis of Bell's Palsy of the Gut, and a new CT scan does too. But the local GI docs never heard of such a thing, and they're suggesting a motility study. My stomach and intestines started slowing down months ago and now I can't eat at all. So why prove it with another test?
Besides, they say if the test proves reduced motility, they'll prescribe Reglan. Terrible side effects and it does nothing but treat symptoms, if you're lucky enough to avoid tardive dyskinesia.
If there's a doc who understands how TBDs can affect the gut, that could be a lifesaver. Literally. If I continue to be unable to eat, what next?
I'm in Maryland. I'll see my LLMD tomorrow, but he's been saying for months that he doesn't like to think about Bell's Palsy of the Gut because it's so hard to treat. So he's had me remove root canals, do mercury chelation, IgG shots, and herbal tinctures. None of these has helped.
Two weeks ago I suddenly declined drastically, became limited to juice and crackers. But at least I could eat; today it's juice only. Not protein shakes like Ensure--I can't handle anything that heavy. Just juice diluted with water. So I'm in trouble.
Any help would be greatly appreciated. I'll also post this on the "Seeking a Doctor" board just in case.
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
posted
You sound like me. I've had horrible consitpation. First off I do daily water enemas (red enema bag), because like you-- I couldn't eat.
Second, you can try domperidon which is similar to Reglan without the side effects (doesn't cross BBB, so doesn't cause the side effects). Just to let you know I did take Reglan for 3 months with no side effects at all, but switched just to be careful.
Domperidon needs to be compounded in the US, so its more expensive, but you can try it, then order it from a Canadian pharmacy for cheap.
After several years trying to figure out my constipation I've pretty much stopped, since I am convinced its caused by Lyme and Co's. I would be surprised if a GI will be able to help you with you stomach issues, might be a waste of money/ time.
I also did the Bicillin with no luck, also Rocephin (IM) with no luck, and am now starting to treat Babs with Mepron.
Mepron hasn't caused too much discomfort for me. Maybe if you start doing enemas to help clear things out you may be able to tolerate it?
Posts: 844 | From CA | Registered: Apr 2010
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Ugh, you're right, a diet of juice only means you're in trouble.
I wonder if you'd be able to tolerate bone broth. You'd get needed minerals and electrolytes that way.
I make bone broth using leftover chicken bones and pork chop bones, cooked with onions, carrots and sea salt. According to the Weston Price site, one of the old remedies was "beef tea," where they'd cook beef for hours to get a good broth.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
posted
Thanks so much, Whitney. I've seen domperidone mentioned on a few posts as I've been researching this problem here at Lymenet.
I'll talk to my LLMD about it tomorrow. At this point I don't much care about the expense. I can pay for it with the money I'm saving by not eating.
I've done enemas as much as twice a day without results. My main problem isn't constipation; it's my stomach--it feels stuffed all the time. Today it's feeling overloaded even with a glass of water. It's awful.
Is your problem primarily constipation, or do you also have this constant over-stuffed feeling?
Did either Reglan or domperidone help you? This isn't the only problem babesia is giving me. I'm so weak and dizzy it's a struggle just to walk.
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
posted
Hi Carol--as I became increasingly desperate I did some research on bone broth and bought some bones last Saturday. I used both beef and chicken and the vegetables and sea salt you mentioned.
I cooked them for hours then had the broth for dinner Sunday night. My stomach felt way more overstuffed the next day. So I gave up and froze the rest to use in soups and stews for my husband.
I thought I'd be able to handle it, but I couldn't.
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
posted
Thanks, Lymetoo. I just read the link. Well, that really gives me pause. Yikes.
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
I'm sorry to hear your troubles. My gut is really bad too and I couldn't do the abx anymore because I was not digesting. I also do bone broth soups-more specifically I'm doing the GAPS diet.
You said you're eating crackers and juice. I wonder what kind and if you are maybe dealing with a wheat or gluten intolerance or a severe case of candida which the sugars in juice would feed. This was one of my problems to the point where it was distending my intestines so I've been on a gluten/allergy/sugar free diet for over a year and now the GAPS diet to try and heal the gut.
It's not an overnight fix and sometimes the bloating can be worse for a few days. Are you up to checking out the GAPS diet and trying it again? It's not for everyone but I don't want you to give up on something if it ultimately will help. I've noticed an improvement in the last two weeks I've done GAPS. It's a bit of a pain but worth it if it helps.
Also, if you are combining proteins with starches or sometimes fruits with starches or proteins that can really cause problems with someone who has compromised digestion.
-------------------- Just a catepillar, full of imaginal buds. Posts: 143 | From Philadelphia, PA | Registered: Mar 2011
| IP: Logged |
posted
I had a gastric emptying study last year and it showed severe delay. You can search my posts.
I also had constipation and heartburn.
My GI put me on bethanechol, an older drug without the side effects of reglan and it helped.
I also took lots of betiaine hcl and digestive enzymes with a meal. I think raising the acid in my stomach stimulated the pyloric sphincter to open up and let the food go down. I heard the gurgling almost immediately.
Lyme treatment helped. I still sometimes take bethanechol.
Also, taking a lot a magnesium helped...keeps the bowels moving.
My llmd in Virginia was very helpful and I think sees a lot of it .
PM me if you want to know who it is?
Oh yeah, also, I think actigal to thin the bile and get the gallbladder moving helped. My llmd rxd it.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
| IP: Logged |
posted
The crackers are gluten-free. It was my only way of eating anything in the past couple of weeks.
The juice is actually homemade kombucha. I have hypoglycemia, so I can't tolerate sugar--it makes me extremely jittery. So I've been off sugar for over 30 years.
I was tested and found allergy-free, but have done a gluten-free diet anyway.
I'm not familiar with the GAPS diet. I'll do some reading and see what I can find.
Today the stomach is so congested I can't even drink water without difficulty. I had a pelvic ultrasound today because they found a large ovarian cyst in a CT scan. I had to drink 24 ounces of water an hour before the procedure--it took 15 minutes just to swallow that much water.
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
posted
Thanks so much, Mary. I'll talk to my doctor about this tomorrow. I've never heard of bethanecol, but the idea it has fewer side effects than Reglan is encouraging. I'll also ask about Actigall.
I took betaine HCl for awhile, and enzymes also, but nothing helped. I take lots of magnesium in the form of Natural Calm at bedtime. That's the only reason I'm not totally constipated.
You PM'd me recently and I've contacted your LLMD. I'm just waiting to hear from them. It takes awhile because you have to email a summary of your problems and then wait to be accepted into the practice.
Peggy
Posts: 143 | From Maryland | Registered: Oct 2006
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
If you went through all the trouble to make bone broth, don't feed it to your husband just yet.
You may be able to eat it when your stomach improves a bit, and you certainly need the nutrition.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I have Bell's Palsy of the Gut also. I have been on Domperidone for a couple years and have never had side-effects (I take 20mg about 10 minutes prior to every meal).
One thing that helps my stomach tolerate liquids is to eat someting solid (such as a GF cracker) after drinking the liquid.
Also, Vitamin B12 is absolutely critically important for my gut to work at all.
And I also need digestive enzymes to be able to eat. HCl causes severe pain because I have gastritis, so I don't take that.
Bone broth may be too rich unless it is diluted down...
I always do better with solids rather than liquids.
Magnesium is also necessary for intestinal motility...but so is calcium...
One thing I find is I can't tolerate vegetable juices...I burp them up hours after drinking them. Not sure why.
In reading about the homeopathic remedy, Aurum Arsenicum, it is said that you can tell the remedy is working when the stomach empties better. I had to order this remedy from a pharmacy in Scotland, because I was unable to find it in the US. PM me for info if you are interested.
Anyway, the Aurum Ars. essentially cured my colonic stasis, and also improves my stomach.
I do not think I have Babesia, but I do have Bart & Lyme for sure, and what other coinfections is uncertain. But I have been hospitalized and put on IV feeding (TPN, Total Parenteral Nutrition) for my gastroparesis more than once.
I also have a feeding tube, but it doesn't work when my stomach shuts down because my small intestine also shuts down at the same time.
If I were you, I'd ask if you can get put on TPN for now so that you don't get any weaker. You need to get nutrition or the gastric emptying will only get worse (malnutrition is a risk factor for the development of gastroparesis).
And also if I were you, I'd ask for Vitamin B12 injections. B12 helps with gut inflammation and also proper nerve function of the nerves that control gastrointestinal motility. When I don't get enough B12, my gut is a lot worse.
I hope this helps. Take care,
-------------------- -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: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
It sounds like you need to see a gastroenterologist that specializes in motility disorders. You will most likely have to travel to a large university hospital to see the doctor and get proper testing.
The fact that you are not able to eat and not able to drink is serious. This needs addressed ASAP. Please tell your LLMD.
You cannot fight any infection unless you have proper nutrition. I'm sorry if I'm touching on a nerve here, it's only because I care.
I also have severe gastroparesis and vagal neuropathy. I went through extensive testing that revealed that I have nerve damage in my esophagus, stomach, small intestine, and large intestine.
So I have that feeling where your stomach is still full hours after you've eaten, almost like you swallowed a brick. It causes pain, nausea, and vomiting.
I also have constipation. Without interventions like high dose magnesium 5grams daily and miralax, it was common for me to not to have a BM for >30days.
I also get sharp pains in my right lower quadrant of the abdomen that cause me to lose consciousness for hours at a time. This happens without warning, has happened at work, etc...
The biggest thing that has helped me has been quinolone antibiotics, mainly Factive or IV Levaquin. They help keep a sort of peace in my GI tract. It's not normal but better.
I also take a good digestive enzyme, 5g of magnesium daily, and zofran when needed.
Reglan and Domperidone did not help me but they may help you. You need to try something. And as Razzle said, you may also need some TPN to help you regain some strength until you can eat and drink again.
Good luck, don't give up OK. Make sure you find some good doctors to take you seriously and take good care of you.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Lymetoo,
Yes, I take injections of the methyl-B12, and also use an oral methyl-B12 spray when I have a sulfite reaction (just about everything has sulfites in it, and my tolerance threshold is really low).
-------------------- -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: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
posted
GI issues led me to my diagnosis in a roundabout way. I became so constipated I actually gave myself a hernia and had to have emergency surgery... and then the problems continued. Long story short, I feel like the queen of horrible guts.
What has helped:
1. Be sure to keep up the magnesium, taken in warm water. I can never tolerate cold water.
2. Use enemas/laxatives only in an emergency, if you are so constipated. Overuse teaches your body that it doesn't have to work for itself anymore.
3. If magnesium is not enough, and sometimes for me it was not, you can do Miralax. Again, don't overuse, but it's not as bad as #2.
4. You need nutrition. Ask your doc to prescribe a medical-grade food supplement. When I was at my worst, I spent two months on one that was a powder containing rice protein, prebiotics, probiotics, and enzymes. The medical-grade is important--no gluten, dairy, soy, etc.
That supplement literally, and I mean it, saved my life. I used it to stablize my weight and repair my gut lining before beginning treatment once I was diagnosed. It's not the tastiest stuff and it smells like baby formula, but it's worth its weight in gold.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
| IP: Logged |
I used miralax twice a day, B12 and my llmd treated me for Bart-- clinical dx. I think it was Ketek to cover lyme and bart.
Anyway--- I am a lot better and I was bad... lost almost 20 lbs in about 6 weeks...without trying. I was also miserable with heartburn and rib pain... I was poppin tums, taking prilosec, drinking mylanta... I was a mess.
My llmd guided me in the right direction.
I did relapse after 6 weeks perfect in the summer, I relapsed in the fall... but just kept up the treatment and I'm much better.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Yes, for me it is not Babesia! Mepron, Malarone, Coartem, Daraprim, Clinda, Biaxin, Zith, and Plaquenil have not helped with any GI symptoms.
The GI symptoms go along with leg bone pain and some other neuro symptoms. They've all responded only to quinolones.
I must say, everything gets worse though when I don't treat Lyme properly so Lyme has a role there too. So Bartonella is the main factor and Lyme is a strong cofactor with the GI symptoms.
Basically, you may need to change your antibiotic protocol up and see if you can get some improvements. Make sure that you are treating all your infections well.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You said that you eat gluten-free crackers and that you had allergy tests that did not really point to wheat but you eat gluten free, anyway.
That's good. An allergy test is not going to be able to pin-point celiac, though.
Have you been assessed for CELIAC? If just with the stomach biopsy, it's important to know they are not always accurate.
Even a TRACE can cause major problems if you have celiac. To be absolutely certain that it's not in even lip balm, and you are 100% gluten free at all times:
Google: Hidden Sources of Gluten -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Keebler makes an really good point on celiac. It could be one more thing to check for just to rule it out.
Glad to hear you are off sugars and gluten and that you are allergy free.
Interesting though about the cyst. I have one too and there are times where I have a hard time getting water down.
It's not bad enough to be removed though my sister had some that were. Mine definitely have an ebb and a flow to them and when they are bigger they really affect my ascending colon. Lots of discomfort, distention, inflammation. And then I get super cranky.
I don't know if you respond to acupuncture but that is one thing that has helped with the ovarian cysts for me. I also noticed a reduction when I went on the Buhner protocol. Not sure what herb it was but they are all quite bitter and will address dampness in the body.
-------------------- Just a catepillar, full of imaginal buds. Posts: 143 | From Philadelphia, PA | Registered: Mar 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic