If you have Gastroparesis caused by Lyme, are there any meds that help with this or do I just have to focus on treating the Lyme?
Posted by Carol in PA (Member # 5338) on :
One of my Lyme friends who has gastroparesis was instructed to purchase this overseas, by a prominent gastroenterologist.
Posted by katrinab (Member # 30330) on :
Yea that didn't do anything for me unfortunately
Posted by ukcarry (Member # 18147) on :
I have been reading about the Japanese herb combination called Rikkun****o. There are quite a few scientific articles around on it and one I came across found that it was as effective as Domperidone in a number of ways for both upper and lower abdominal issues.
I have ordered some from Eagle herbs ( in USA).
Posted by pepperspeck (Member # 18837) on :
I was on Domperidone for a couple of years and in the end, I felt the side effects were not worth the minimal (and not lasting) improvement it gave me. I weaned off of it and onto an herbal product called Iberogast. This worked (minimally) but just as well for a while. I am going to look into the Japanese herb; thank you for sharing that ukcarry. Are the ***'s there to represent letters? Just wondering in case I have trouble googling it. Gastroparesis is often due to vagus nerve issues...I am currently looking into more info on regulating the vagus nerve and will share anything that I find out. Posted by Keebler (Member # 12673) on :
Living (Well!) with Gastroparesis: Answers, Advice, Tips & Recipes for a Healthier, Happier Life
December 2011 - About the Author:
. . . currently the only Certified Health Counselor specializing in gastroparesis management and one of very few health professionals with both personal and professional experience with the condition. . . .
KAMPO MEDICINE: The Practice of Chinese Herbal Medicine in Japan
-by Subhuti Dharmananda, Ph.D.
Excerpt:
Kampo medicine is widely practiced in Japan, and is fully integrated into the modern health care system. Kampo is based on traditional Chinese medicine but adapted to Japanese culture. With only slight modifications, it has been adopted also in Taiwan and exported from Taiwan to the West.
This article presents a concise history of Kampo . . . a collection of certain traditional formulas came to dominate the system.
The basic texts of Chinese medicine, such as the Neijing Suwen and Lingshu, and the Materia Medica came to Japan during the 7th through 9th Centuries. . . . -
Posted by Keebler (Member # 12673) on :
- When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links, etc.
UPLEDGER INSTITUTE LINK - VISCERAL MANIPULATION maybe very helpful for GUT ISSUES -
Posted by Keebler (Member # 12673) on :
- Backing up, not sure if you are gluten-free or not but that is probably very important.
Sidebar: When a lifetime of suffering, medical visits and prescription drugs can be resolved with a not especially challenging dietary change, a certain amount of retroactive frustration seems justifiable.
Not surprisingly, experiences like mine with dairy, outlined in my column of two weeks ago, are more common than unusual, at least according to the roughly 1,300 comments and e-mails we received since then.
In them, people outlined their experiences with dairy and health problems as varied as heartburn, migraines, irritable bowel syndrome, colitis, eczema, acne, hives, asthma (�When I gave up dairy, my asthma went away completely�),
- full article at link above. -
Posted by katrinab (Member # 30330) on :
I never had this symptom until last year, so I'm pretty sure it's bells palsy of the gut caused by Lyme. The article reccomends herbs and flagyl. Does anyone know how flagyl helps with this? And does bells palsy of the gut usually resolve with abx treatment or is it usually permanent?
Posted by Razzle (Member # 30398) on :
Flagyl helps by killing the bugs. That's the only treatment that will cure the bell's palsy of the gut - gotta kill the infection causing the problem.
I'm doing better on flagyl than other abx, and I have bell's palsy of the gut from Lyme/coinfections.
Bartonella is particularly suspect when it comes to bell's palsy of the gut, because of the strong affinity of Bart. to mess with the nerves (including gut nerves).
Unfortunately, Flagyl doesn't kill Bart. So if Bart. is an issue for you, then killing Bart. would likely help with the Gastroparesis.
But be aware that your gastroparesis may flare during herxes...at least, this has been my experience.
To get the stomach to empty faster:
Prescriptions:
Reglan - prokinetic/anti-nausea (has dangerous side-effects for some, but not all who take it experience those side-effects)
Prepulcid - prokinetic (but no longer available in the US)
Domperidone - prokinetic/anti-nausea (but not available in the US)
Erythromycin - irritant to the stomach, which then stimulates emptying
Mestinon - pro-cholinergic
Viagra - may or may not help with Gastroparesis, but this drug affects NO, which controls muscle contractions.
Herbs:
Ginger - stimulates bile (do not take this if you have gallbladder issues), encourages motility throughout the gut, reduces nausea
Peppermint - stimulates colonic motility, which may help improve emptying of the stomach (the whole gut is connected - so if the colon is slow, so is the rest of the gut)
Iberogast - contains peppermint and other herbs; some say it helps with their Gastroparesis.
Triphala - in theory, this helps with stomach emptying, but according to an LLMD/LLND (yes, he's both an MD and an ND) I just asked about this yesterday, he says he hasn't seen this herb do much for gastroparesis.
I take Domperidone (PM me if you want to know where to get it from), but am considering switching to Mestinon for 3 months because the Domperidone has lost some of its effectiveness for me.
This is typical - most with Gastroparesis have to periodically rotate meds because the drugs lose effectiveness, but then we can return to what we were taking before once some time has passed (usually about 3 months is all it takes).
Take care,
Posted by Keebler (Member # 12673) on :
Find those trained in your area. Often, they are covered by insurance, too.
Not all who are trained in their cranial-sacral therapy are also trained in visceral therapy but all who are trained in the visceral tx are likely also trained in cranial sacral.
Their approach is very gentle and safe (no quick turns or twists of the neck or spine, which can damage those with lyme).
Cranial-sacral may help to restore function to stomach nerves. -
Posted by Life+Lyme (Member # 33568) on :
I have this as well, and I have found that a good bit of Magnesium and digestive enzymes helps some. Treating is the biggie...you have to treat for things to improve.
Posted by Keebler (Member # 12673) on :
Topic: MAGNESIUM - Informational Links set -
Posted by Keebler (Member # 12673) on :
- Gut trouble can be due to genetics.
How one wrong assumption about genetic heritage put so much pain for so long on one man. Location of ancestors is not the end-all, be-all for information. Genetics are not that simple.
Then, of course, the doctor who thought he was faking (Arghhh!)
At first, this man thought he had food poisoning. It turned out to be something far worse.
By Sandra G. Boodman - The Washington Post - October 26, 2015
Excerpts:
For nearly a year, Sank, with the help of his stepmother, a physician, struggled to determine the reason for his pain.
He saw multiple doctors, including two gastroenterologists, a kidney specialist and an infectious-disease physician. He underwent workups for reflux disease, a liver disorder, an intestinal blockage and malaria.
One doctor suspected he might be faking.
. . . said he knew of no Middle Eastern connection, Steinberg was unconvinced. “You never know what’s floating around in our blood,” he said.
It turns out that he was not the first doctor to wonder about the diagnosis. Records show that the infectious-disease specialist considered FMF but did not pursue it after Sank told him he was of European descent. . . .
. . . confirmed the diagnosis of FMF and revealed that he had inherited mutated copies of the affected gene from both parents. . . .
[Full article at link above.] -
Posted by Razzle (Member # 30398) on :
From research, Gastroparesis is associated with low BH4. BH4 is used up during ammonia detox. Those with methylation genomic variants which affect the amount of BH4 created may thus be more prone to experiencing Gastroparesis from anything that increases ammonia (high protein diet, Lyme/Lyme die-off, h. pylori, etc.).
Known methylation genomic variants that decrease BH4 or are associated with low BH4: MTHFR A1298C, NOS, and CBS.
Posted by Neko (Member # 46592) on :
quote:Originally posted by Life+Lyme: I have this as well, and I have found that a good bit of Magnesium and digestive enzymes helps some. Treating is the biggie...you have to treat for things to improve.
The best thing that helped me was removing hormonal based birth control, which can be constipating.
Then, I added the powdered magnesium supplement called calm. It is amazing, I don't have muscle spasms or cramps anymore either!
Posted by Keebler (Member # 12673) on :
- Re: those who may at times rely solely or mostly on IV nutrients -
be absolutely certain with each new dose of exactly what is in it and what is not. That can change -- and they may not be required to inform the patient so figure out how to figure this out in other ways, too.
Drug Shortages Forcing Hard Decisions on Rationing Treatments
By Sheri Fink - The New York Times - Jan. 29, 2016
" . . . a Cleveland Clinic patient who has Crohn’s disease, said she had no idea that
an important ingredient had been removed from the daily intravenous nutritional treatments she depends on until she developed side effects from the deficiency. “Why didn’t anybody tell me?” she asked." . . . . -
Posted by Keebler (Member # 12673) on :
- For those with various issues of the gut, this can be very important. YOGA BLOCKS work for me. Since I've started using this approach, my colon is SO much happier.
. . . Sitting creates a difficult angle for your waste to travel through, because the puborectalis muscle chokes the rectum, the video says. That apparently makes you strain and increases pressure on your abdomen. . . .
If your local, independently owned stores don't carry this, Amazon also has varying styles of this as well as other manufacturers' models that are similar.
Two Yoga Blocks are just perfect, too. -
[ 09-27-2016, 06:30 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Pain kept this young woman from eating for 5 years, and doctors didn’t know why
By Sandra G. Boodman - Medical Reporter, The Washington Post - September 26, 2016
Re: A condition called MALS — median arcuate ligament syndrome Excerpts:
. . . “We’ve done all these tests, and they’re all normal,” . . . .
1/3 way down:
. . . Extraordinary coincidence [section heading] In August, Hild’s parents struck up a conversation with a fellow hiker on a backcountry trail in the Sierras.
He turned out to be a doctor at the University of California at San Francisco who specializes in advocating for patients with complex cases.
The Hilds mentioned Mackenzie, and the doctor asked if he and a colleague might contact her. They were teaching a course on medical advocacy, and her case sounded promising.
Over the next few months, the doctors, along with student Jessica Gould, held a series of Skype chats with Hild. . . .
. . . Gould, 29, now a family medicine resident at the University of California at Davis. . . .
. . . Early on, Gould typed “postprandial abdominal pain” (pain after eating) into a medical search engine. One of the hits was a condition called
MALS — median arcuate ligament syndrome.
First described a century ago, MALS occurs when a band of connective tissue called the median arcuate ligament,
which extends from the base of the diaphragm and crosses over the aorta, compresses the celiac artery, which supplies blood to the stomach and other organs. . . .
. . . Skelly agreed to review Hild’s case. “It did look like she had MALS,” he said, after examining images from earlier tests that appeared to contradict the written report ruling it out. . . .
. . . Four weeks later, testing confirmed Skelly’s suspicion. An earlier CT scan had been performed incorrectly, producing a false negative result. . . .
. . . “I couldn’t believe so many doctors had missed this. . . ." . . . .
. . . She underwent surgery March 18. The next day, Hild ate a spoonful of hospital scrambled eggs — and waited. When she felt no pain, she burst into tears.
Hild battled weeks of postoperative nausea, which dissipated as her stomach grew accustomed to eating. Her pain has not returned. . . .
[Full article at link above.]
---- A four-minute VIDEO accompanies the article above.
This is an extraordinary account of events. And it resonates for anyone with any medical complexity or anyone who might ever be faced with such. -
[ 01-05-2018, 04:19 PM: Message edited by: Keebler ]
Posted by terv (Member # 29410) on :
What are your symptoms? Do you have pain? Diarrhea? Constipation?
I am have never been diagnosed with it but I have severe constipation with no pain at all.
Posted by Keebler (Member # 12673) on :
- terv,
The original question posed at the start of this thread is four years old so you may not receive an answer.
As is a habit of mine since this thread has acquired so much good detail, I have just added on GI relevant articles when I see them in hopes this can be a collection of links for anyone, any time. -
Posted by Keebler (Member # 12673) on :
- terv,
"severe constipation with no pain at all" still sounds like it would result in pain and just feeling rather icky much of the time - and toxins not being eliminated well.
I have found the herbal formula, Seven Forests RHUBARB 17, to be wonderful, easy, gentle, effective as achieving normal function.
As I deal with two kind of porphyria, constipation goes along that. My liver does not make all the necessary enzymes (and these are not available as dietary enzymes) and that can lead to chronic constipation.
Porphyria links below. Especially if you have MCS, multiple chemical sensitivities (as that can be connected to porphyria), take a look at that. Chronic infections may also create a kind of "secondary" porphyria. And that can create a lot of colon issues.
Rhubarb 17 really helps, as does magnesium. But rhubarb can be tricky / harsh alone or if too much. Best in a balanced formula.
Many good links here -
Posted by Lymetoo (Member # 743) on :
Keebler .. I went to that thread and began clicking on links for information. Nearly every one of them was a dead link.
"In your spare time" you might want to find new links.
I really was interested in reading some of them!
Posted by terv (Member # 29410) on :
Sorry Keebler didnt realize it was an old thread meant for Gastroparesis. I will delete my post and then this one later after I assume you have read it.
However my constipation is/was really bad. I could go for a month with nothing coming out and I had NO pain. My stomach just blew up like a balloon. Eventually dulcolax would work.
I tried every diet/supplement/drug etc. Nothing worked. My osteopath suggested I try Dr. Schulze's product (Intestinal Formula #1)for constipation. While I know Senna is one of the big ingredients, I dont care because it has been working for me EVERY DAY (assuming I take it the night before).
The amount I need seems to vary. When I take ABX I need more but when off I need just a few pills. I am so happy though. It has been years dealing with this with no solution in sight.
Posted by Keebler (Member # 12673) on :
- terv,
Hope you realize my post just above was in reply to another poster's instructions, not to you.
Keep your posts here. They belong. And the thread can move along fine with your questions as they relate to gut stuff. Unless you think you'd be better with starting your own thread.
I thought you had asked a question of the first poster. I just didn't want you waiting around from an answer from the person who posted the first question four years ago.
I'm no expert in gut stuff, though, and especially with antibiotics, others might come along with more answers if they are likely to click onto this thread.
If you are ever to have a lower scope of your bowel, senna might need to be stopped some time prior as it can stain the colon.
See the "One Earth Herbal sourcebook" link for that in the Rhubarb set as it mentions senna and how Rhubarb does not have some of the drawbacks as senna & cassara.
Still, it seems important to understand why you have this going on - sorry no one has found answers for you yet.
If liver support is not in good shape, it can really clog up the colon. Just one thought. Yet, the Oregon Grape Root in the formula you take provides some berberine and that is helpful for the liver. The other herbs in it look good, too.
But, in addition to the colon staining with both Senna and Cassara, they can cause dependence. Rhubarb works differently.
This book's search function will search for both body issues and also certain herbs:
[ 09-28-2016, 05:53 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Some Rx can cause magnesium deficiency. You might search the antibiotics you've taken in this regard. And maybe be sure the kind you take is the best for your overall needs.
Some interesting results with a search at Google for:
constipation, Buhner
&: constipation, yoga
&: constipation, self massage -
Posted by terv (Member # 29410) on :
Yes I was asking original poster question. Thanks for pointing out to me that it was an old thread.
I will look into your links. All of my doctors except my LLMD and osteo are giving me a hard time about Shulze's formula. I need to detox though and this has been going on for years with no answers.
Posted by Keebler (Member # 12673) on :
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