I'm going on year 13 with lyme (at least), been in treatment for past 14 months. I've had chronic constipation for the past decade (now realizing it was lyme) I've tried laxatives, fiber, psyllium husk, magnesium, massage, flushes, acupuncture, enemas, you name it. The abx are making it worse.
I'm at the point where I can't pass bowls AT ALL and haven't been able to for the past few years. I have to do colonics in order to clear my LI, which can be a really big pain and take hours to expel the water and sometimes it doesn't all come out so I have to walk around with a stomach full of diarrhea yukkkk!
I went to the GI doctor and as expected, my peristalsis is the problem. Dr gave me some medication he called the "big guns", a type of stimulant laxative, and I just can't take anymore of this stuff, it often makes me vomit and is very painful.
He said the only other alternative for someone like me is removing my large intestine (gasp) I'd really like to keep that thing in there, my question is, has anyone had this problem as bad as I have and eventually got back to normal? Does anyone know of anyone who's had this surgery? Would IV abx be a better alternative?
I'm desperate:( Any advice is appreciated.
Posts: 8 | From Tx | Registered: Jul 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
You poor thing!! I would not do any type of surgery. Also, I would think it would be best to steer clear of pharmaceuticals.
The first thought that comes to mind is that you should hydrate the heck out of yourself. This has a huge impact on getting things moving again. Lots of water with lemon. Maybe some coconut water (not too much because of sugar). Also add in some aloe vera juice. Drink way more than you normally do and see what happens. (don't drink any juice, soda, etc., keep it clean and unprocessed).
Also, diet diet diet is so important. Stay away from all processed foods. And eat a fair amount of raw every day. You can't do too much fruit because of sugar, but green apples are ok (also high in fiber.) Also do huge salads daily.
I really think you can turn this around. Good luck! Best, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
all i can take is miralax. and it takes a day or so to work.
however when i take extra calcium and magnesium and drink milk, low fat, i go within a couple of hours.
i have several products like benefiber and other stuff, most of which i haven't used. i'd be glad to send you some things if you'd like to try them.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Wow, I had constipation for what seemed forever, and thought I might have had some suggestions, but it seems you have mentioned most of the supplements I would have suggested.
With me and the antiboitics I am taking, I have bowel habits that are completely opposite. I am now tooo loose with my stools, and I don't like it.
I sure hope you get some ideas here. Good luck.
Posts: 893 | From Florida | Registered: Dec 2008
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posted
I had constipation for as long as I remember with bouts of diahorrea although Lyme made it worse. I found out that it is a symptom of gluten problems and excluding it along with other things like dairy has ended it.
Posts: 148 | From europe | Registered: Apr 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
High histamine? The following may give you some insight:
Look up the signs and symptoms of high histamine in other websites too. High histamine is genetic.
Don't expect to have every symptom. They vary from person to person, but if you have several listed, high histamine might be "happening".
Genetic predisposition for high histamine combined with lyme, maybe worse (over the top histamine), IMO.
There is also an estrogen-histamine connection and persons with high histamine may have high levels of estrogen (estrogen dominant). History of breast cancer in your family?
Do you also have long fingers and/or a 2nd toe longer than the first?
Do you have seasonal allergies?
Do you have any other symptoms listed on high histamine links?
Don't mess with the supplements mentioned on the websites. Get your histamine level tested (blood). Find out for sure.
You could, however, simply lower your intake of foods that are high in histamine and see if it makes a difference/helps.
Mg levels DIVE at the outset of lyme (fact and linked a zillion times) and Mg IS our natural *anti-histamine*, anti-inflammatory and inhibits HMG CoA reductase (puts the brakes on the cholesterol pathway - which is ONE of many pathways Bb takes).
The H1 receptors are impacted by many "anti-histamines". Only the ones that make us sleepy, however, cross the BBB. Examples: UnisomTABS and Benadryl. Those anti-histamines that do NOT make us sleepy do NOT cross the BBB.
The H2 receptor OTC supplement called Zantac reduces our stomach acid (HCL).
Zantac is ranitidine. And ranitidine bismuth CITRATE (combo. is called Tritec in EUROPE) apparently can destroy all forms of Bb in the GI system.
However, that said...apparently it worked to eliminate SARS too (link below). Obviously "Tritec" must impact more than just the GI system since SARS -> breathing problems.
Bendectin (H2 receptor antagonist), for N/V of pregnancy was a combo of the chemical in UnisomTABS (low dose) AND vitamin B6....years ago. It is still sold under a different name in Canada and given to moms who have N/V when pregnant. High histamine can be a nausea trigger. Although you would think it would make us sleepy, when taken WITH B6 "sleepy" doesn't happen.
B6 deficiency = sleepy. Restoring the levels of B6 and taking the H1 antagonist -> blocking histamine and NOT becoming sleepy.
Mg is an anti-histamine and works with B6 (best form is sublingual since our stomach acids destroy it - which is why Bendectin, another anti-histamine with B6 was COATED).
Mg (I would chose Mg citrate) + sublingual B6 may help. It likely would be best to take a small amt. of Mg several times during the day to keep the blood level up as the kidneys will rid any excess and vitamin B is generally not in our system long either.
Source Naturals makes sublingual B6. It dissolves under your tongue. It is not expensive. B6 has more functions than any other vitamin.
I wish Tritec was still available in the U.S., but I was told, there was "no call for it". It is made by a U.S. firm and IS sold in Europe. It could be compounded here by a compounding pharmacy.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
Thanks for the insight everyone, it's nice to be able to talk about such things so openly:)
I'll be taking a break from abx next month so hopefully some of these treatments will be more effective.
I spoke with my nutritionist today who suggested I start taking L-tryptophan, which increases serotonin levels which is supposed to stimulate peristalsis. Also, I'll begin taking glutamine and licorice to help heal the intestinal lining, which is especially helpful for those if us who pass mucus.
Marnie, my family does have a history of breast cancer and I myself have had awful estrogen dominance symptoms for years. I will certainly get my histamine levels tested next. Thanks for the info!
Posts: 8 | From Tx | Registered: Jul 2010
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posted
Triphala is supposed to be good for the GI tract. You might Google it and see if it seems like something that would help you. One ingredient also breaks up biofilms (haritaki).
Have you ever done Dr. Natura cleanse? There is a website if you Google it.
How about parasites? They are a huge problem for Lyme patients. Check out www.humaworm.com
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
i had it bad with a slow moving emptying stomach also, it was an awful time, treatment has taken this problem away thankyou Lord.
what relly seemed to help i was going through it was digestive enzymes from Vitiman World
hang in there Scott
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Vit C
A good brand/form
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I have had this slow moving - near stopped bowels during my lyme for a decade. It is more of balsy I think.
I tried it all and nothing stimulate will work. For me as well. Because you can not get the drug to where it needs to go and do what it needs to do.
Mirilax is something that is an option and the only thing that worked for me for the past few years. It seems to break down things in the digestion and make it soft but not too soft and it moves along because of that.. only.
Because this is a plastic I did not want to put it in my body but could not find something else even close.
But upon my recent clinic stay last year my doctor put me on an oxegenated magnesium. I told my doctor I have tried magnesium and it was not good enough but this product was called colon cleanse so and he said the magnesium is not absorbed into your body either.
So.. I tried it and Amazed BIG TIME. I can not believe how taking these pills has helped normalize me. And I mean not just softener type but it works. Not sure how.
I want to GI doctors and tests and all those things and the invasive options are not options when I knew it was Lyme and also being on narcotic meds..
Why would your doctor give you a "big guns" Stimulant? My doctor GI took time to figure out that it was not about "constipation in the general population terms.
But a palsy type situation where it is stagnant in there due to no muscle movements and no normal moving along in the digestive track.
STIMULATES are JUST PAINFUL and DO NOT WORK>
I tried them too and My gosh I just cramped up in my stomach. They did not even make it into my intestines.
GOOD NEWS> I no longer have near that issues!!! I still use the Oxegenated Magnesium Color Product but not near as much. And I am able to go every day and working on 2 times a day.
UNHEARD of for me for the last decade.
SO do not give up!! and Maybe try what I ended up with? Do not take anything at all that stimulates. I do not care what they say. That is just not what we need in this situation nor what will work. The pain I endured was so horrible.
I also during the past decaded ended up in the ER a few times with Infections that I look back and think were in the gut from things moving so slow that infections formulated and got me violently ill. I feel my doctors should have helped me figure this out but they could not. Its amazing.
I did figure it out as I never had the problem again after I did figure it out. But Dah. Its kinda obvious really. I also had to figure out how to treat it myself too.
And also I had to not listen to the doctors who wanted to do surgeries or drastic tests even who did not want to just hear me out and listen to me about Lyme and Such and how I was "feeling" .
Funny thing. Our "Gut" instinct is usually right!!
Pardon the Pun!.
I would consider IV abx as well if that gives your gut time to heal and normalize some while you find ways to treat and get a hold of whats going on.
If you can do them. Or there are things you can take with oral abx that should be able to protect your gut if the abx themselves are causing the problem?
I have not found that abx are the cause but more just a condition around lyme. Balsy of the gut and or narcotic pain meds made it ever worse for me.
Good Luck
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Thanks everyone for the advice, please feel free to message me in the future if you ever come across anything else that might help, I'm open to anything.
Wow springshowers, you have been through the wringer with this as well! I'm so glad you're doing better, it really gives me hope and I'd really been losing all hope lately thinking I'd be doomed to a life of colonics:( Is it not totally ridiculous to be jealous of people who have diarrhea lol?
I would double up on some other lyme symptoms if it meant fixing just this one!!
I agree about the stimulant lax, I stopped them long ago since they didn't do anything but cause me pain and even though the tests the GI dr ran were helpful, I refused to take the "big guns" since I knew they wouldn't work and NO THANKS to those side effects.
I had found a little bit of relief intermittently with some natural remedies a while ago but after starting the pharm drugs, nothing works whatsoever and my bowels can't seem to move through my LI at all, making it very difficult to flush out.
I will look into the things you mentioned, thanks very much for the info:)
Posts: 8 | From Tx | Registered: Jul 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
What Springshowers is referring to is what Dr. S calls "Bell's Palsy of the Gut" from Lyme invading the cranial nerves that innervate the digestive organs.
You have lots of good suggestions above. Definitely surgery should not be considered!!
Let us know what works when you find what does work for you, which I'm sure will be a number of things and a process, not a
magic bullet (much as we all might wish for that). Springshowers has direct experience with it.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Drinking mangosteen juice works for me. It's an anti-inflammatory, antioxidant juice from the tropics.
When I first started it, my eye pain and blurred vision went down in the first hour. Then my sinuses ran for 48 hours, and I wasn't aware I had sinus issues, and my bowels emptied for 72 hours, and then my gums didn't bleed after four days.
I drink it daily, now about a half ounce in the am and pm, and it definitely keeps me from any trouble with eyes and constipation.
I drank a lot more in the beginning, to get that huge effect. But even still, if you try it, ramp up slowly.
There are lots of brands in healthfood stores and online. I drink the Ultra one from Trace Minerals with 70 minerals added. Vitacost sells it most cheaply online.
If you try it, drink a lot of water, as it can be powerful.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Springshowers, what's the name of the company that makes the Colon Cleanse?
Posts: 13116 | From San Francisco | Registered: May 2006
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
You can also try Castor oil or Herbal laxatives.(Swiss sells a great one) They are much gentler than the pharmas..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Hi There Robin
I did a search and found another product with the same ingredients
Ozonated Magnesium Oxides 2100mg - Other ingredients are Rice Flour, Citric Acid
Do not be confused as there are other types and similar items as when I did this search I noticed that there are various other blends that are advertised for similar treatments but I can not vouch for those either.
Here is the product that matches the one I have exactly to ingredients and dosage. Its called Mag O7.
I did not even know all this that I am reading about how it works and all it can help.
I really have liked this stuff and I am a tough one to please when it comes to supplements
[ 08-19-2010, 08:01 PM: Message edited by: springshowers ]
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It is astonishing that surgery has been presented as the only option when there has been so much yet unexplored.
Adding to others, it may have been mentioned but I might have missed it:
GLUTEN-free diet?
Sure helped years of constipation for me. But, I guess you are probably already doing that as most doctors know to suggest it for anyone with any kind of G.I. tract problems. (?)
I would also like to think that you've had a long program of visceral manipulation by someone specifically trained in this. You can google the UPLEDGER INSTITUTE to find doctor, nurses, or P.T.s who are trained in VISCERAL MASSAGE or manipulation.
Although you added powdered fiber, more foods high in fiber and moisture might be helpful for the whole foods aspect. Are you getting at least 8 serving of vegetables and fruits a day? Five is not enough. I've read recently that 8 is really what we need, two servings at each meal and two snacks of veggies or fruits.
Porphyria can also cause severe constipation. You mentioned estrogen dominance - if porphyria is in the picture, estrogen dominance makes constipation much worse:
posted
You should try Oxy-powder from GHC. - Not sure if it similar to Mag O7 product.
Oxy-powder has worked amazingly well for me. I have also suffered from constipation all my life. It has got alot worse recently with none of the usual natural laxatives working.
You might have to take a few capsules at first but then you can go down to maintenance dose of 1 capsule.
Posts: 11 | From UK | Registered: Sep 2008
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posted
Thanks heaps for all the suggestions, I will try all of them.
I was horrified when the GI Dr. suggested surgery but you know how some docs can be, "It doesn't work? Chop it off!"
I think Im probably one of the worst cases in constipation history so if any of these suggestions works I'm throwing a party:)
Very interesting thread on the Porphyria thread, Keebler, thanks for the info. So glad I found this site, I'll be reading up a storm from now on
Posts: 8 | From Tx | Registered: Jul 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hi sunnysideup, I too struggle with chronic constipation. I tried all the "big guns" including several experimental drugs.
Have you seen a GI "motility specialist" yet? You may have to travel out of state to see someone with experience. There are ways that they can test the nerve and muscle function/coordination of your entire GI tract to find out where and what exactly is causing the problems. If you know what the problem is you might be able to treat it.
I was eventually diagnosed with severe gastroparesis then "post infectious vagal neuropathy". Basically Lyme caused nerve damage all along my GI tract. I was told that there was nothing that could be done to help improve function because of the severity of damage done.
I hope that once I get Lyme and Co's under control that my body may be able to heal itself, at least some, and begin to function more normally again.
Without tons of Magnesium and Miralax I would only have one BM per month (with menstrual cramps). With these interventions I still struggle to go once per week. If I sit and listen with my stethoscope, my gut is often quiet, no bowel sounds. It is creepy.
I tried colonics but they were a terrible idea. The water went in but did not come out for several days. I was in so much pain. I stupidly tried it a couple more times hoping that they would help. This was before I knew about the nerve damage so now I understand why my bowels didn't respond to the treatment.
Whatever you do, do not get surgery unless it is absolutely necessary, verified by several more doctors. That is not a fix. Instead, you might consider acupuncture. It did help with my symptoms but it did not provide a lasting cure. I didn't know that I had Lyme when I tried it. If I had the money I would like to try it again with my current treatments.
Take care sunnysideup.
Posts: 5237 | From here | Registered: Nov 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm so sorry you are having this awful problem. Both my brother and sister have similar issues.
I would avoid surgery at all costs! My dad had his large intestine removed and then years later the small intestine. It might have been the other way around, I'm not sure which came first.
Immediately after the first surgery he had problems with his electrolytes. He also had a great deal of difficulty digesting food. He felt malnourished most of the time and was always devising ways to get some nourishment in his system.
He would have a lot of gurgling noises and issues such that he didn't want to go out in public. Keep in mind this was years ago and hopefully they've come up with new ways of doing things but who knows?
Then came the fun for him of having to rely on others to change his bag (that holds waste) and the final insult of having nurses come and put the bags on wrong (happened many times) and then we would have big messes. It wasn't fun for me but it was horrific for him.
I would go with IV waayyyyy before having surgery. Many of my neuropathy symptoms went away with treatment.
If you don't already have a naturopathic doctor, I'd find one and go through their suggestions too.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Hi Sunnyside - I had a constipation problem , too. Between the antibiotics, Lyme, candida, etc., our guts are being invaded with the wrong kind of bacteria plus parasites, heavy metals, etc.
I didn't improve until I went holistic. The holistic dr. put me on IMD Intestinal Cleanse. It's stronger than Humaworm (more expensive) but it works great!
He also told me to eat fermented foods like sauerkraut, pickles, kimchi, etc. Fermented foods put the good bacteria back in your gut.
Try to get the preservative-free sauerkraut at the health food stores. Eat some before eating a meal.
A big part of the diet is making homemade soups out of whole chickens, bones with marrow, fat and all. This repairs the damage!
Stay away from GLUTEN AND MILK PRODUCTS.
I am taking fermented cod liver oil and juicing carrot juice mixed with cukes, celery, kale,etc.
And...coffee enemas! Yes, this works and it is safe! Use organic coffee and google coffee enema directions.
Our livers are stressed so beside taking digestive enzymes, try Lipotropic Complex. You can buy this on Amazon.
I do all of the above,(I just take a little psyllium everyday) plus I'm on the Allergie-Immun therapy and I'm happy to say that I'm not constipated anymore.
Good luck!
Peace
Posts: 163 | From New Jersey | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
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Professional association for Naturopathic doctors in the State of Texas.
Our members are graduates of four-year graduate-level Naturopathic medical schools who currently practice in the State of Texas. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
When I was a nurse many moons ago, we gave Ilopan injections post op (hysterectomy) to prevent a paralytic ileus.
It worked like a charm.
This is what it IS:
Ilopan Chemical Information
dexpanthenol - An alcoholic analogue of D-pantothenic acid and cholinergic agent.
Dexpanthenol acts as a precursor of coenzyme A necessary for acetylation reactions and is involved in the synthesis of acetylcholine.
Although the exact mechanism of the actions of dexpanthenol is unclear, it may enhance the effect of acetylcholine.
Dexpanthenol acts on the gastrointestinal tract and ***increases lower intestinal motility.***
It is also applied topically to the skin to relieve itching and to promote healing.
****
Oral route and more info. here (to run by with your doc):
posted
For a couple of days when I had candida, my digestive system seemed to shut down. My stomach hurt and got very bloated. I vomited 3 hours after a meal, and my food was not digested at all. I also got constipated. I don't usually have those problems.
I was already using sodium ascorbate vitamin C powder, taking about 4 teaspoons a day mixed in tomato juice. More than that, or if I drank it too fast, it would give me diarrhea and I would have to back off.
That first day when my digestion wasn't working, I kept drinking more until I had used about 12 teaspoons. It made my stomach hurt less and relieved the constipation within a few hours.
It is not toxic, and it has lots of other benefits, unlike a drug for that specific purpose. Not very expensive, and you don't need a prescription, so it's one of those things that's worth trying if you haven't tried it already (it wasn't mentioned in your list, but maybe you have).
After those issues cleared up, I was back to my limit of 4 teaspoons again. I have read that you can absorb a lot more sodium ascorbate without diarrhea if you are sicker than usual.
Restoring my digestion to its proper function also required propbiotics and things to kill the yeast, so I think all the vitamin C did was give me some rapid relief.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Oh my...if you are vomiting undigested food, you have NO BENEFICIAL BACTERIA LEFT.
LOADING DOSES OF PROBIOTICS IMMEDIATELY.
Essential Formulas...5 capsules one hour before a meal (2x/day) with a full glass of water.
You should use up the (expensive, sorry) entire box in one week. Then alternate other probiotics (refrigerated are best).
The good guys help keep yeast under control!
You may also temporarily need digestive enzymes.
I know this for FACT!
My son had salmonella poisoning...massive horrible smelling diarrhea. One week later an appendectomy followed by abx.
Key symptom (which I missed)...HUGE bruise at surgical site. NO vitamin K. NONE.
Two months later...vomiting undigested food. Depressed. Lost 30 pounds. Cholesterol level dropped to 86 (total cholesterol).
I was freaked as low cholesterol is a cancer marker. Google: low cholesterol cancer.
It took a very good doc (wife was a nutritionist) to help restore the balance.
The doc ordered a stool spec. checked for the beneficial bacteria...none found!
Without beneficial bacteria to help digest food...kiss your neurotransmitters goodbye.
It took us TWO years to rebalance them!
PROBIOTICS!!!
Bb needs NaCl for motility. Bb triggers calcium activated chloride channels...TRPM8 = Na + Ca channel.
While WE need Na too...be careful.
B6 helps control Na levels (B6 has more functions than any other vitamin), but when that is deficient...aldosterone will kick in.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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i had chronic constipation as well, and i had to take digestive enzymes to be able to go...
however, now that i'm on zithromax, i have the opposite problem, and i no longer need to take digestive enzymes... if anything, i need to be taking pepto bismol! things have totally reversed!!
i wish i could find a happy medium :/
have you ever tried zithromax?
Posts: 220 | From Kansas | Registered: Mar 2010
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