posted
for fellow pain suffers: just would like to share what happended and avoid this same response in someone else with lyme and co already on their plate.
for me pain has been HUGE issue going back yrs. (auto-immune tx for at least last 8 yrs, lupus/pain/GI)
so, now that i know lyme and co is the real problem have been with LLMD since 9/08 after dx in 8/08 by local neruo.
so, have had pain meds ramped up since 9/08 and have been with pain dr for 3 mo or so. pain dr "gets" the lyme issue about WHY the pain is there but the whole lyme/tx is kinda over her head. so, she handles the pain aspect
last month upped methadone 10mg 3xday from 5mg only 2xday. week 3 i was getting better relief and using norco only 3-4 xday. for me this was HUGE!! i had been on norco 10/325 with 100mg of ultram every 4hr WITH methadone and STILL in pain.
also on neurontin/baclofen/soma at night/clonopin at night/cymbalta. these have helped with neruopathy pain over last 2 mo. with slow increase of neruontin
so....go to LLMD and we go over symptoms. getting some improvement on "off" days of rocphen. but pain is always issue, even on "good" lyme days.
so, he talks about low dose naltrexone and has helped several of his pts. so i am game to try if will help pain. we take rx and get it filled/compounded and drive home (5hr ride)
get ready for bed, take new med with night meds (as was instructed) --now here is the worst of it; i usually research my med changes if i am not familiar with a med before i start anything. I did not this one time, it was late, i was tired, having GI issues for 5hr ride home, and so on. This was my big mistake!! So, within maybe 30min. of taking the 1st dose of this i was having clonic seizure activity. i was at comp./study then moved to gameroom thinking the furniture was broke/wrong..i was so out of my head that i did not know it was me not the furniture flailing around.
walked right into wall and woke up mom, then woke up hubby when tried to go to bed and i am moving/flopping/arms everywhere/legs/whole body arches up..etc.
so, they figure this is NOT right and off to ER i go. ER dr. wanted to give larger dose of naltrexone as tx...hubby had good since to point out that if 4 mg dose did this why give 400 mg? worried they would kill me
so, er dr goes off to "research" this. they try phenergan/benadryl with no change. still having seizures and getting move violent as time goes by.ER Dr held off on any tx until tox. screen came back ( "it was - , just so you know they tell my hubby"). so, once i have not tried to OD is established (which my hubby and mom had already tried to tell them this on arrival to ER) they tell hubby ok, go home and she can do this for the next 3 days, nurse brings in discharge papers. (mind you, i have atractted the attention of most of the ER staff at this point, lets go see the "lyme lady" who is in a bad way/still with this clonic movements/seizures
hubby, freakin out, talks to nurse and asks why cant you sedate her at least if we are being sent home, i think she should be admitted to be observed. (Thank GOD for hubby ... he has commen sense!!)
so, full syringe of dilaudid later and bingo!! i get still, and am able to stay still. then i fall asleep and dont remember the car ride home. glad for the nurse who gave me the larger (nurses dose ) as there was a bit of range the dr said she could give. took the whole syringe to knock me out.
so........if you are on OPIOD meds to start, Low dose Naltrexone should NOT be used until all opiod meds have been weened off, leaving extra time for things like methadone with long half life.
saw my pain mngt dr today, told her about the whole thing and she was upset. no more changes will be made by anyone but her!!
so, next time i can assure you i do my homework as well!!!
always, proceed with caution enough to gain the knowledge you need before something like that happens.
hope this info may help prevent someone else from having this happen as well
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
So sorry this happened. The problem with lymies is even when you research things there can be unexpected consequences. We always try to talk to a pharmacist when starting any new med, but even then some potential interactions may just not be known.
Thank goodness your hubby was on the ball. If at all possible someone else needs to be with you when in the ER. They don't always listen to the patient or even the family member, but if need be the family member can complain or request a 2nd opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
You aren't supposed to be on opiods at all during use of LDN. I researched this a while back. I didn't want to use it since I was taking pain meds. I can't believe your doctor didn't know this!
I would find another doctor... I'm not an MD or even a PhD & I knew this. They use this drug for people who want to get off heroine...
I asked my doctor about it & he said he didn't think it did much good for people with Lyme. Some people responded & some didn't.
It didn't seem worth it to me since the pain meds I take are helpful when i need them.
Sorry if I seem angry - it's just frustrating when I hear about people suffering like this when it could have been avoided...
Hope you are feeling better!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Hi - sorry you had this terrible experience - sounds very scary.
I was thinking about low dose Naltrexone- and was going to ask my opht. about it. I have a chronic eye inflammation that started with Lyme and nothing seems to be helping it - I heard that there has been some success with ldn for inflammation issues (including eye problems.) I'm not on any pain meds, so that won't be an issue.
I'd be interested to hear about any one else's experiences with it -positive or negative.
Thanks.
Posts: 34 | From Saratoga Springs, NY | Registered: Jun 2008
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I've had very positive experience with it (other than it messing with my sleep, I think), and I've been on Percoset for a few days while on it (the percoset worked fine during that time). I know that with higher doses, those used for heroin treatment, you're not supposed to take opioids and they're rendered ineffective. I don't think "they" really know what the differences are between high dose side effects and low dose ones like we take- generally, people have had some poor sleep and apparently some anxiety, and occasionally herxing or worsening of Lyme symptoms due to a reactivated immune system, but this is the first I've heard of someone having seizures while on it. It's not surprising that your LLMD didn't know- it's just not a common outcome.
Also, are they TOTALLY sure that the LDN is what caused it? Have you had seizures before?
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
As far as positive experiences, I've managed to get rid of candida as far as I can tell- and I'm still on antibiotics, which should make that much worse. I think ti's the LDN that did this. I'd previously had candida problems for decades.
-------------------- Symptom Free!!! Thank you all!!!!
posted
thank you for the responses to all. i hope this info can be of help to someone so the same situation may not happen. and yes, i am blessed my hubby was there and knows at least enough that he was of great help during that whole thing
Maria: yes, we are positive the naltexone cause the whole episode.
we had the rx compounded, hubby dropped off and picked up after we had a quick lunch. there was no "instruction" sheet with it. then we drove home for the next 5hr. There was no warnings given by pharm or LLMD with me being on opiod meds. this was compound pharm that we had never used and is near LLMD office.
LLMD was fully aware of me using methadone, norco, ultram. The fact that i am still having pain even on best days is what sparked the whole conversation about LDN and the good responses some pt have had. My LLMD sounded very knowledgeable about it and in explaining how he said it would help did make sense to me. LDN was supposed to just lift very few of receptor sites thus letting next am dose of methadone more effective with some open receptor sites avail for better coverage of meds. ok..sounds like good idea. after the whole thing was over, yes i found where LDN is absolutly not to be used with opiods. and when being used for heroin withdrawl must be monitored and dosing even then can start low at 1mg.
lymeHerx: and yes, my bad for not looking it up before taking it. wont be a mistake i make again. just after long ride home, with gallbladder pain/issues (rocphin has aggrevated gallbladder and now have been recommended to have it removed due to extensive stones as well as sludge. this has been very new onset. so now i have to think about a surj i do not want to have on top of all the reg. stuff)aggrevated by the car ride then get home to house full of family. when got home late evening and was exhausted and that alone caused my bad judgement. i was just to tired, took meeds for night and the all h#&l broke loose. i am hoping sharing this may help someone else prevent the same thing from happening
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
Yes, it says everywhere on the internet 8just do some seaches on ldn or low dose naltrexone) that it cannot be combined with opioids.
but, some have used ldn with an occasional codeine pain tablet, and nothing happened, but that is not the same as people who are on larger constant doses of strong pain meds like here.
go over to some of the webpages and forums and yahoo groups and there should be other people out there that have experience.
I think it is good you posted this, this is essential to know, that chronic opioid pain meds and ldn do not mix.
And, it is not recommended to start with the 4,5 mg dose, they usually start on a much lower dose. I started on 2,5 mg.
I take ldn for thyroid antibodies.
nora
Posts: 366 | From Europe | Registered: Nov 2008
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Sounds like you have alot to deal with. I feel for you!
Posts: 2905 | From New England | Registered: Sep 2004
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he has commen sense!!)![[Smile]](smile.gif)
) as there was a bit of range the dr said she could give. took the whole syringe to knock me out. 
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