canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi all,
My LLMD put me on Reglan, to see whether it would control my seizure-type events - wondering whether they are some kind of hopped up migraine.
I also have symptoms of gastroparesis, and it turns out Reglan addresses that as well.
Lo and behold, it helped, but I noticed increased muscle stiffness in my legs, checked the Internet and this site - Betty G you mentioned Reglan is a big NO-NO for Lymies - what are the contraindications?
I decided not to take any today (4th day) - I had a massive headache. Co-incidence?
Preparing for appt w LLNeuro.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I had a HORRIBLE experience with it , elevated prolactin and began lactating ! I also developed nasty nausea that lasted for 5 weeks after I got off it , along with horiible anxiety and depression. Read reviews at drugsdotcom and see how others reacted.
I know one other woman who hada bad experience with it also - developed horrible depression and was hospitalized .
I would read carefully before taking it .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I believe Reglan is black boxed. My son took it off and on for cyclic vomiting syndrome. It was the only thing that worked. The scary side effects were non-reversable facial paralysis. Then it was black boxed. After that the pediatric GI would not prescribe it.
He later took mestinon and got lots of relief. This med is easily tolerated and works on gastroparesis. It is used for myasthenias gravis.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I had to stop taking it after it caused tardive dyskenesia.
That can become permanent!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I took high doses of Reglan for about a year, it helped with my severe gastroparesis.
I eventually had to go through some extensive GI testing that required me to stop taking all meds. Afterwards I tried some experimental meds and never went back on the Regalan.
I never had any side effects from it though.
Not sure why taking it would be specifically contraindicated for those of us suffering with Lyme disease?
Posts: 5237 | From here | Registered: Nov 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Kari,
Intractible vomiting would be one way to describe what goes on here - I can easily vomit 5 times / week.
I just did a little reading on mestinon; can you please elaborate on how that regulated your son's vomiting?
Sammy - what were the experimental drugs you tried to control to vomiting? Was there one drug that you feel made the difference in terms of no longer requiring drugs to control the vomiting subsequently?
TuTu and others: Thanks. I'm going to stop - I took another small dose today, and it stopped the vomiting, but I was anxious for about 2.5 hours.
I may ask my GP if he'll prescribe domperidone to see whether that works - any considerations for Lyme patients that I should be aware of?
A friend of mine tonight asked me if I had dopamine problems - funny you should say that, I said. My neuro mentioned parkinsons type symptoms years ago when I was very ill; I would sometimes walk with a shuffling gait.
Are there any definitive tests for dopamine? I could ask my GP for a test...why do I keep reading domperidone doesn't work as well at controlling symptoms as Reglan? I tried domperidone to no effect before I was diagnosed with Lyme...I'm considerably better now - maybe it will help??
Best,
CBL.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
You may have a difficult time obtaining Domperidone. I'm not sure if it is readily available here in the USA.
When I was prescribed Domperidone it was given to me at a university hospital as part of a clinical research study. It was not FDA approved at that time.
I usually tolerate medications really well but I felt irritable and grumpy and not like myself on the Domperidone. It was weird. I had a hard time believing that it was the medicine making me feel that way.
It didn't help with my gastroparesis at all. And it's major side effect is lactation, people in other countries take it specifically for that reason to help with breastfeeding.
I tried a couple other medicines that didn't stand out in my mind because they didn't really help either. This was all couple years ago.
Testing that I had done revealed that I have nerve damage, vagal neuropathy, that causes my gastroparesis and GI motility problems. An infection (probably Lyme and the coinfections) caused this.
What has helped me most is IV Levaquin or oral Factive. I also take digestive enzymes with every meal (NOW brand Digest Platinum is the best), I take at least 5 grams of Magnesium daily, I keep Miralax on hand.
I have RX Zofran for bad nausea days so that I can try to keep hydrated, I have RX Librax for abd pain episodes. I eat slowly, take small bites, chew well. I don't eat large portions. I also avoid beef and beans because I can't digest them, they cause me pain.
I still have bad days every now and then especially when I'm having a Lyme flare or if for some reason I'm not able to take my Levaquin. I still have problems with vomiting on those days. But it happens far less often. Like once or twice a month now instead of several times daily when I was at my worst.
So you can see, it has taken time to find what kinda works for me. It may take time to find what kinda works for you. I think that these infections play a big role. I NEVER had GI problems before I got sick. Then bam! Lyme, that was the very first symptom, they thought I had an appendicitis (after the bull's eye rash but that didn't hurt so that didn't trigger alarm in my mind...).
Sorry, I rambled, I hope you can get some helpful information out of this!!!
Posts: 5237 | From here | Registered: Nov 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Sammy,
Thanks for the broad scope of your reply.
You're on long-term Levaquin? Aren't you concerned about tendon ruptures; lord knows what else?
Best,
CBL.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I took Reglan for a while with no side effects.
You can get Domperidon from a compounding pharmacy, or order it online.
Posts: 844 | From CA | Registered: Apr 2010
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I also had bouts of frequent vomiting that were maddening and unpredictable for 2 years . I did not have a lot of nausea preceding the vomiting , just sudden vomiting that sometimes would not stop without a trip to ER .
The thing that turned me around was working on having a healthy gut . Possibly a coincidence, but once I had no episodes of constipation and had plenty of fiber, liquid and probiotics, it went away . I do not really know what caused the issue , but it was no fun .
I would avoid reglan and try digestive enzymes or something else . I am saying a prayer for an answer for you .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks, Whitney and Ann,
Ann, what did they give you at the ER to stop the vomiting?
I also have almost no nausea prior to the vomiting. In the past, digestive enzymes, vitamin B and _definitely_ probiotics (anything fermented) make things worse...Seems I have _many_ food triggers, which is one reason we tried Reglan - the possibility that I'm having migraines with no / infrequent usually mild headaches.
Best,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
O was told reglan was a big no no bc of the neurological side effects. I was able to obtain domperidone (sounds like fine champagne) from Canada. Some compounding pharmacies in US can make it as well.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I do worry about my tendons. LLMD is planning on a trial to stop it again soon. So we'll see if the infection is gone yet...
It amazes me that you all don't struggle with nausea before the vomiting spells. I have horrible horrible nausea!!! I have 4 different anti-nausea meds that I can take if it gets really bad.
This will sound bad to some people reading it but sometimes I actually feel better after I end up vomiting. I really hate it so I try everything in my power not to. I guess it can be the body's way of saying that "hey I can't handle that food today, it has sat in your stomach for 6-8+hrs".
I never went to the ER for this. I just always rested my stomach for at least an hour after getting sick. Then gradually reintroduced fluids so that I wouldn't get dehydrated. I usually felt better afterwards.
Posts: 5237 | From here | Registered: Nov 2007
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posted
There is now a warning on domperidone regarding heart issues. Serious stuff. Google it or do a search here. I posted about it. Search under my member #743.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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