posted
My child has been possibly diagnosed with Lyme Disease. He is 5-years-old, and, right now, one of the main symptoms appears to be that he has lost control of his bowel movement. (Other problems that may or may not be related to Lyme are problems with fine and gross motor function, sleep problems, lots of allergies, and behavior issues.)
He started having constipation 1.5 years ago, and, for the last year or so, he has seemingly morphed into something where he has lost control of his bowel movements and sometimes has several accidents a day. For a long time, we were viewing this as a separate problem from the fact that he possibly has Lyme Disease. But one day when I visiting my Lyme doctor and he was with me, my son had an accident, and the doctor noted that his bowel movement seemed unusual in both texture and odor. He thought it was possible that he had some type of large parasite. (Interestingly enough, when my son was given Artemsisin for a possible co-infection, the Artemisin only exacerbated the symptoms.)
He gave him Alinia, and, lo and behold, that made a huge difference not only in his ability to have normal looking and smelling BMs at normal frequencies, but his personality completely changed. His pattern of oppositional behavior that had been driving us crazy well past the "Terrible Twos" completely disappeared. Granted, it could be because his bowel problems got better, but the two did not necessarily occur at the same time.
At first, he went on Alinia for two weeks, but the symptoms returned after a few weeks. Then, he went on a for month, because my (and how his) doctor felt that some of the large parasites require longer courses to be eradicated. We have been off the medication for a month, and now, the symptoms are again steadily returning. Unfortunately, he has tested negative to every single parasite so far.
To say that we are at our wit's end is an understatement. It affects our whole life, because we have to send him places that are willing to accept that he has accidents. He, in turn, feels lousy, because he has no control. The worst is that we are not sure what is causing this. The only thing that we know is that the Alinia is the only thing that has caused any measurable difference so far. Certainly not the Miralex that most of the pediatricians think is such a Godsend.
Has any parent out there with a kid that has had Lyme disease suffered with this same problem? I have been trying to find info on this particular issue, but information on Lyme in kids is difficult to find, and most people note problems with headaches and arthritis. I would love to hear from anyone who has had experience with a similar situation. Also, I am also curious about what the problems would be to put a kid on a longer term course of Alinia.
Posts: 6 | From northern California | Registered: Mar 2007
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posted
Is he taking any antibiotics now? What about probiotics -- acidophilus, bifidobacteria or s.boularrdi? The s.boularrdi can help to stop diarrhea. Hubby has also had some success with olive leaf extract.
It is possible that the Aliana may have killed some parasites, but also messed up the other good bacteria levels.
On the other hand, does he have any back pain? Do the accidents occur at certain times of the day or if he eats certain food such as dairy or wheat?
Hubby is not a kid at 51, but he has had parasite issues and lots of problems with nausea and dry heaves. For a couple of years he had mid day diarrhea regardless of what he did. Normal bowel movements in the morning and evening.
Believe it or not, some chiropractic and bodywork massage adjustments fixed the diarrhea problem. I think exercise during the day was aggravating his back although he had no back pain at the time and the exercise was also stimulating the diarrhea.
Unfortunately, he had a paralytic ileus (the intestines lock up and there is no peristalsis) in January -- still not sure if it was due to a virus or the lyme. Anyway, he also found out in February he has 2 bulging disks. He is having some spinal decompression treatments now which are helping with the back pain, but the diarrhea is trying to come back.
Hope you can figure out something that works.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Yes, he has actually been taking probiotics for a while, and we have been mixing up the types, which is what one of my doctors suggested. He has also been doing cranial-sacral therapy, which has helped with other issues, but not necessarily with this one. He is not taking antibiotics right now, although he is taking cat's-claw. Both cat's claw and Zithromax(independently) had the same effect - gave him a lot more energy and made him sleep better, but did nothing for the bowel problem.
Posts: 6 | From northern California | Registered: Mar 2007
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posted
That is very interesting about how the Alinia helped his condition. I have had many issues with parasite through my treatment. Some were found with traditional medical testing and some were not.
A couple were found with energenic testing also.
I had used Alinia not only for the lyme but also to kick out toxoplasma, which can have some neuro behavior presentations, giardia and crypto.
I now keep up a regular regeime of parasite control using Cloves, blackwalnut hulls and blackwalnut tincure. Grapefruit seed extract also can have anti parasitic uses but many also think that it is not that usefull.
Cloves might be a bit hard for your little one to tolerate.
Is there anyway you could find someone who is good at ART or muscle testing? I am sure you cuold find a better alternative other than having to take the alinia for the GI stuff if it is primarily a parasite issue.
Posts: 582 | From milwaukee wi | Registered: May 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I don't have any suggestions. I just know that since I came down with lyme in 2001, I go through times when I do not have control.
Thank goodness it is not often. But, I did just go through a day of it a couple of days ago.
Have yet to figure it out.
Have not discussed it with my lyme doc.
Hopefully with treatment it will become less for him.
I know at first it was much worse for me.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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We are just ordering the test for Celiac Disease or gluten sensitivity right now. He has some, but not all, of the symptoms for that, so it's a strong possibility.
We tried the black walnut hulls stuff with grapefruit seed extract and artemisin, but he just couldn't swallow the pill, and opening it up and mixing into apple sauce launched a morning and evening battle that was exhausting. (It tasted horrible, to his defense, so I think that I would have fought it, too.)
What is toxoplasma? Also, what is ART or muscle testing? Is that the same as energenic testing?
I am assuming,Lymetoo, that you are suggesting a MRI of his lower back to see any possible physical abnormalities?
Please keep all your suggestions coming! We went to a pediatric gasteroenterologist, and it was a huge waste of money and time, as they won't admit to the possibility of either Lyme or parasites having a role. (I am not sure they do.... I just don't want someone ruling that stuff out before they have looked at all the possible causes!).
Also, it's good to hear that others have struggled with this who have Lyme's. It's hard enough for an adult, but, for a child who doesn't understand what's going on, it's doubly hard.
Posts: 6 | From northern California | Registered: Mar 2007
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quote:Originally posted by lspars: I am assuming,Lymetoo, that you are suggesting a MRI of his lower back to see any possible physical abnormalities?
Yes. Maybe there's nerve damage from a disc? A long shot, most likely!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Presenting with constipation is not unknown- see following abstract- and I had TERRIBLE IBS (Irrtibale Bowel Syndrome) when i first got sick- just EVIL IBS, ruined my life before anything else did- would have to RUN to the bathroom- worst time was on our anniversary, in Monterey, on WHARF, had to run to restroom, barely made it, was in there for over an hour and husband and child just waiting outside in the gathering cold of the evening- my husband (now ex) held that against me but I couldn't help it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I had no ability to stop it-and that went away with abx therapy- THANK GOODNESS!!! Intersting- my brother has this now- and has had 3 colonoscopies and no cause found- he is a lawyer in LA- but they won't try abx!!! I personally think this was Ehrclihiosis for me because it was reactive to Doxy when I got treated first off- **************************************** 1: Arch Neurol. 2005 Apr;62(4):671-3. Links
Constipation heralding neuroborreliosis: an atypical tale of 2 patients.Shamim EA, Shamim
SA, Liss G, Nylen E, Pincus JH, Yepes M. Department of Neurology, Georgetown University Medical Center.
This is a report of 2 patients with Lyme disease who initially presented with severe constipation, which progressed to ascending muscular weakness resembling acute idiopathic polyneuritis, with neuropsychiatric symptoms, severe urinary retention, and hyponatremia. These symptoms resolved following proper antibiotic therapy.
PMID: 15824271
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All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Thanks CaliforniaLyme! That last paper looks interesting..... I will get it. Yes, it's weird: it started as constipation, but, now, it seems to have morphed into the problem of going too frequently... although it could all still be symptoms of constipation. It's just that he has been so much more regular lately that it's hard to believe that he is still that backed up....
We have been looking more at Babesia or Bartonella as possible co-infections, with Babesia believed to be the more likely.
Posts: 6 | From northern California | Registered: Mar 2007
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posted
Thanks CaliforniaLyme! That last paper looks interesting..... I will get it. Yes, it's weird: it started as constipation, but, now, it seems to have morphed into the problem of going too frequently... although it could all still be symptoms of constipation. It's just that he has been so much more regular lately that it's hard to believe that he is still that backed up....
We have been looking more at Babesia or Bartonella as possible co-infections, with Babesia believed to be the more likely.
Posts: 6 | From northern California | Registered: Mar 2007
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Ispars, so sorry for your son's problems. He must be miserable with this.
A friend of mine had been having similar problems for over a year. (And BTW, I and a couple of other people are pretty sure she has Lyme.) At first, she seemed to have constipation problems, then it went to a diarrhea and ``control'' problem. She had stool samples tested and no parasites ever showed up. She did test positive for some kind of gluten sensitivity, but not true Celiac Disease. But even staying away from gluten and related products did not solve the problem. She was still having diarrhea and ``accidents'', sometimes with vomiting.
She went to an alternative practitioner who tested her using a VEGA test machine. The test showed that she had parasites, and the practitioner recommended a product called Vermox. There are similar products on the market and I think she used a product called De-Worm.
It is a 3-day treatment. I think the tablets are chewable (or you can get them that way). After the first dose, her diarrhea completely disappeared and most of her other GI pain and complaints. She said she could almost feel it ``killing something''. By the third day, she wasn't feeling too great, but by then the treatment was over.
She was thrilled at the results for a couple of weeks. Then her symptoms began to return. She had forgotten that they recommend that you do the treatment a second time in 2 weeks to kill off any parasites that may have since hatched, etc. So, she had re-ordered the product the last I talked to her.
I was concerned about giving this to children, so I went to another website regarding Vermox, and it says:
``Children-This medicine has been tested in a limited number of children 2 years of age or older and, in effective doses, has not been shown to cause different side effects or problems in children than it does in adults.'' http://www.drugs.com/cons/Vermox.html
I have no idea if this could be part of your son's problem. See what the Celiac test shows first, I would think. All I really know is that stool samples don't always tell the story about parasites/worms in the body. And doctors often rely on these stool tests as though they are 100% definitive.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Thanks for your input. I have just spent the entire evening hunting up stuff on Alinia and its effects. Today, we went to see his regular pediatrician. We explained that, after two years, the only thing that had made any difference was the Alinia.
During our consultation, he seemed very receptive and promised to look up Alinia and see what its primary and possible secondary modes of action are. We left very hopeful that maybe we are getting somewhere. Then, he called back this afternoon and basically read me the riot act, suggesting that we were irresponsible parents for letting our son be on Alinia for so long (he had one course for ~1 month)and telling me that Alinia has some toxicity for children, albeit reduced relative to the pill form. His conclusion after two years of laxative therapy and going to a psychologist: that this is still all psychological on his part, even thought I can tell that he is way past the point of being fearful of going to the bathroom and genuinely wants to be and is trying to be in control of his bowels......
Needless to say, he put me in a panic. I felt like we had done a very bad thing, so I hurriedly looked on the Internet to see if I could see what he was talking about. So far, I have found nothing about specific toxicity for children. What I love is that he still insists that this is psychological. However, if it is psychological, would he have improved so dramatically on the two separate occasions that he took the medicine???? (He really doesn't know the difference between any of the meds he taking -- they are all described as tummy meds...so I don't think that we can ascribe to the Placebo effect)
I think that it either has to be Lyme or it has to be some very persistent intestinal parasite that he picked up at his childcare center. As he could have possibly had it for a long time, it may not be responding to just one or even two sustained courses. I will also look into the meds that you suggested, Truthfinder.
It is just so frustrating to hit the wall continually with the more traditional, Western medical doctors, even on issues that shouldn't be completely out there for them. (I didn't even mention the "L" word...... he has already pooh-poohed that.....) I have already found a number of papers on a variety of parasites that Alinia works on, all of which are written by M.D.s!!!!
Thanks for letting me vent a little bit.... It is just so disheartening to hear that we just have to give it time -- when it's already been two years of hell!!!!!!!!!!!!!!!!!!!!
Posts: 6 | From northern California | Registered: Mar 2007
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Ispars, I know what you mean.
To be honest, I think parasites are very easy to pick up, and could come from almost anywhere. I just wish docs would get it through their heads that you don't have to live in a Third World County for this to happen. And that stool testing isn't all it's cracked up to be.
Another "GI story" as a case in point. My health food store guy told me about a local woman here who compalined to her doctor (who is also MY PCP) for over 2 years of GI problems. She found her exact symptoms on the Internet and thought she must have a tapeworm. Of course, the doc thought this was impossible.
So the doc and the patient struck a deal: she agreed to have that stomach-scope thing done, and the doc agreed to do a Plain x-ray of her lower GI if the scope showed nothing.
The scope didn't show anything except a strange looking area that looked like a "bite" had been taken out of her!
So, they did the x-ray and guess what? A big, old tapeworm was sitting in there. (I did not know that the segments of a tapeworm calcify so they can be seen with a plain film x-ray just like bone).
So, I guess the moral of the story is to keep pressing for answers and not give up, even if your doc thinks you are looney.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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