My experience with Low dose Naltrexone

I read that if someone is dependent on opiates and takes LDN, it could put them into withdrawal (it blocks the opiate receptors)

I have a script ..maybe i will try it ...i just didnt want to lose any sleep. ..is tramadol a opiate? Even if it is sythetic

Hi Kim -
Thank you for the reminders-- our previous conversations are all coming back to me. Takes awhile unfortunately... not very convenient. I didn't recognize my 4-yr old cousin the other day.

Anyway, I'm really sorry you're GI is in chaos - that is a very tough group of symptoms. Pain is pain but when you're faced with challenges feeding yourself 3 times a day and all the time in between, it really puts "symptoms" in perspective. I feel for you.

I think you're probably right in that the herbs stirred up some trouble--and that is usually a good thing. It has happened to me multiple times. Unfortunately with these cultures, they don't know what they are looking for and stool tests often do not pick up on serious problems. People think they will find whatever is there but that's not the case. I hope the new abx you start tomorrow works. If you feel like doing more testing--not sure if you have a positive bart test but a Fry Labs test might be helpful.

When I shared that I finally figured out a link between these nasty GI episodes that occur every 4-5 wks and land me in the ER--and the A-Bart I was taking, my LLMD just went straight to vanco and I am eternally grateful. No episodes so far. I am eventually going to resume the A-Bart while I'm on the vanco. Now if I could do the infusions daily, I'd be clear of most of these GI symptoms. As I sit, I have relieve every other day. Still better than nothing.

Let us know how your new abx goes... fingers crossed!

-p

Rockon -

I'm glad you responded. That is horrible - so many, too many stories like yours have been shared and yes we could talk forever about how we have been failed by health care!

I don't want to beat a dead horse but I also don't want your take away to be that I'm implying fibro is not real. The symptoms associated with fibro are undeniably real.

What I wish more people knew was that there is a difference between a condition like fibro (and most of us here have lived those symptoms) and the CAUSE of those symptoms. AND that our MDs have a responsibility to discover the cause.

Our lack of understanding and the medical system's/MD's complacency about the diagnosis and lack of investigation into the cause has allowed the cause to destroy our bodies and lives. I want to chant "A fibro dx is not enough! A fibro dx is not enough!" We must demand MORE. If you are able to target the cause, the end goal is to eliminate both cause and symptoms.

I sincerely hope you are recovering and finding relief. No one deserves to live this way.

-p

My neighbor has a fibromyalgia diagnosis...for many years now.
We have a lot of deer in the neighborhood...and her back yard is one of their favorite places.

I often wonder if she has Lyme disease. Her symptoms of fibro - are growing.
Started out with muscle and nerve pain, along with sleep issues. This happened after she had a back injury (and was under a lot of stress)
The last couple of years, she's added a few more to the list...one being vibrations in her body.
I see she is also using a cane to walk now.

But, she is content with the fibro diagnosis. I have told her about my diagnosis...and her reply was "I had a lyme test many years ago" I also told her that the standard Canadian test is pretty much useless.
I left it at that...she knows where to find me.

Pirouette said...

Then when I resumed the LDN a couple months later, I had immediate relief. So this makes me wonder if you can plateau on it--maybe something to do with an addictive type response? If I get to that "plateau" point again, I'm going to try to cycle off/on again to see if that helps.
-p

ldn is tricky, there's no one way works for everyone. Some have mentioned that it helps a lot to take a weekend off once a month as to sort of reset things. My wife is on 2mg and it keeps her colitis in remission and no side effects.

Thanks to all for the discussion. There are so many that if I miss someone please don't be offended.

Sorry it turned into a combo rant/cleansing my brain.

The doc I'm working with told me I could titrate up to 4.5mg and it wasn't until I got to that dose that I had real relief. But for me it was REAL relief.

I think with any of these kind of meds taking a break to reset is necessary as we develop a tolerance for it. I had to do the same thing with hydrocodone. I don't know why I don't have an issue with developing addiction type issues. I can only say that my Dad is a recovering alcoholic and many years ago my mom said 'stop drinking or I'm leaving with the kids". He never took another drink. I suspect that like the tendency to addictions (at least alcohol and I strongly suspect sugar - sugars my issue) in my genetics is the ability to just stop.

Rockon, so I'm 53 years old. I grew up in Connecticut. At 16, I started having severe incapacitating headaches. I went off to college and while I was there the mom in Lyme contacted the health department and off this roller coaster went. I never heard anything about it and moved to MA after college. Went from doctor to doctor with headaches, MCS, pain in my sternum. Now I look back on the pain in my sternum and I get angry because the doc said to me 'young people your age get this but we don't know why, here are cortisone shots'. Well, young people my age were the generation that grew up walking through the fields pulling off ticks and keep walking. We missed all the hub bub about Lyme.

It wasn't until I was almost 40 that a doctor gave me the diagnosis of Fibromyalgia, but even then he screwed me over. He didn't tell me what the diagnosis was. He just said take this, it'll fix your sleep and you'll be fine. No not so fine. I was in so much pain I was begging for something to relieve it. They offered me Celebrex and physical therapy. This was a pain clinic and the physical therapist didn't understand that pushing me didn't 'build up my muscle strength' it sent me into even more pain. One day while I was waiting to check out there was a man who was really mad. He said why do I come here for you to just cause me more pain. I was right there with him. I looked down at the checkout sheet and saw Fibromyalgia.

I was a researcher by trade and got on the internet and learned that I had been diagnosed with something nobody believes is real. I never went back to that pain clinic. I went from doc to doc including to Duke med and months of physical therapy there. When I was no longer of use in training their residents they kicked me to the curb.

Eventually, I found a doctor who told me - its not all in your head, your pain is real and so aren't your other symptoms. He also told me if you go to other doctors DONT use the word Fibromyalgia. We worked together for about 12 years. Three years ago he joined a ortho practice. He was a Rheumatologist and wanted someone they could refer to in-house. They were terrible. I was on hydrocodone and his idiot nurse wrote the scripts wrong then got mad at me when I had to bring them back. Not quite a year ago, they started rescheduling my appointments. Then I was called and told he 'was no longer practicing because he had a medical condition that prevented him from seeing patients.' I suspect it was early onset Alzheimer's based on the mess that was left in my records.

They kicked me to the curb to with a list of doctors that won't see you if you say the Fibromyalgia.

I've read the literature too and yes there is a lot that shows genetics, damage, inflammation,... but its not the patients that are at fault for not recognizing Fibromyalgia as something real. The doctors don't want to deal with it because they don't know how to treat it.

In November of 2014, I started having unbearable joint pain. My doc put me on Plaquenil and sent me to my eye doc for a baseline image. I was lucky. I'd been with this eye doc for 20 years. She knew my history and knew I grew up in New England. She had just been to a professional lecture. The doc talked about a patient who had been from doctor to doctor with all these weird symptoms. Turns out she grew up in Pennsylvania. Eventually, a doc asked if she had been tested for Lyme. It ended up the patient was his wife and she tested positive for Lyme.

I was lucky my eye doc was in the right place at the right time and knew that the only place to be tested was Igenex. I researched Lyme and low and behold, I read my story over and over in other peoples stories.

I nagged my doc for months until he sign the order for the test. I'm sure he did it just to prove me wrong. I tested positive for an active infection according to the CDC criteria. I have all the symptoms of Bartonella and Babesia. I tested positive for Mycoplasma and Chlamydia. My EBV test lite up like a Christmas tree.

I was also lucky because I was on HuffPost reading the article about Joni Mitchell having Morgenolls (sp). I went into the comments section and the conversation was about Fibromyalgia and Lyme. Pirouette made a post that made me think she had found treatment for Lyme. I clicked through on her name and sent her a message. She sent me here.

While I don't have a doc because the one good doc left the state after having his license suspended because BCBS didn't like paying for the treatment, I am working on tackling the things I can. There was another doc that I had started with but she basically baled on me and other members of the forum that were seeing her. No other doc in the state.

Having said that, the forum and members have been a fount of information and helped me with getting the treatment for things I've been able to tackle.

I do believe that Fibromyalgia is real but it shares many of the same things as Lyme. But it has no etiology and docs aren't interested in treating it because it doesn't fit into their 15 office visits. The Lyme is real and its something I can fight but I will continually be dogged by the diagnosis of Fibromyalgia.

I went on the Fibro forum here and I literally got brushed off.

So I know this comes off as angry. That's because I am angry but not at you. I am angry at the world. I've suffered from this for more than 35 years. I have a 16 yr old that I passed it to during pregnancy. He is chronically fatigued, has anxiety, incomnia, neurosymptoms and fine motor deficits in his hands. In the last year, I have found out that I've got this disease, my father ended up in the hospital with 10 surgeries, two hospitals, months in a skilled nursing facility. I spent 2 months with my niece going behind my back posing as me with the surgeons because she felt she should be making the decisions for my parents.

My mother was in a snf with COPD and I fought the snf for 5 months to get her the right treatment. They prevented me from getting hospice in there until the week before she died. Why? because hospice would have to report any patient abuse and boy did they have abuse. A few weeks before my mom passed she buzzed for help to use the bathroom on the third shift and the aide threw a roll of toilet paper at her.

I literally spend 5 months calling the hospitals to check the contact info for my dad until I figured out how to lock it down so I was the only one who could change the contact info. I was also having to call my mom's snf three times a day to make sure they were giving her treatment. I had to make the decision to make my mother DNR/DNI and take responsibility for putting her on morphine. I literally had the conversation of yes I know that morphine depresses breathing and in the end it could be the morphine rather than the cold that would kill her. I had to make the decision of not to travel there (I'm 700 miles away) yet and then have her pass that night. The night before my sister who was drunk tried to get the snf to change the contact information to my niece. The same niece I found out had been stealing from my parents.

I've had deal with my parent who had been married for 55 years being in different snfs when my mother passed. I spent $4000 to get my family (husband and two kids) to CT while my drunk sister was telling everyone I wasn't even bringing my kids. I also had to write $8000 worth of checks for my mothers funeral. Still owe $1250 on the headstone.

I had to deal with my drunk sister picking a fight at the wake, luckily before anyone got there. Boy did the Lyme rage come out. I scared the heck out of her. I remember the look of fear. Am I proud of it, no but it was not an unreasonable reaction to what she and my niece put me through.

I had to deal with my dad having to learn how to walk with a walker because the surgeries did so much damage to his legs but he's alive. I had to move him from CT to NC. His furniture is still there and he's living with an assortment of furniture from my house. I'm still paying $150 a month to store his furniture and its going to cost me at least $1500 to move the furniture down here. I had to find him a place to live and for at least another month I have to pay part of the community fee that his socsec & pension don't cover. I don't even know how much I've paid out for his care, maybe another $2000+.

I also spent the months of March and April unable to eat or sleep because the nausea was so bad I ended up with two ER trips, a CT and X-Ray with Barium. Eighteen pounds later, I've finally gotten relief but I had to cry all over the poor young man who had the misfortune to answer my call when I called to find out why an antibiotic had to be preapproved.He told me the approval would take 5 days and I told him I couldn't wait that long. I hadn't eaten in almost two months.

I made an impression. He called me back 30 minutes later, said it was approved but had to be shipped. He express shipped it and said he put a coupon in so there's be no copay. When it came, I almost dropped dead. It was $1300 for two weeks (to the ins co, don't know what the copay was).

So its been a rather trying year. It's no ones intent here to show disdain or contempt for anyone else in this forum or others. But we have found a place where we can get support and help that isn't available elsewhere.

Please don't take what is said to be critical of those with a different diagnosis. We are all just trying to help each other.

Sorry for the rant. It's been a long year and this week was the anniversary of my dad's surgery that was supposed to be no problem, over night just for observation and ended up irrevocably changing all our lives.

Sorry, I guess I had a lot to get out.

Hope everyone has a good day,
Kim

P.S. Yes the abx worked wonderfully well. I'm now able to eat. Still occasional nausea. Doc wants me to do the SIBO test but I've got to wait 5 more days (two weeks after ending abx and 5 days of no probiotics). Don't know what will happen if positive but at least I can call if the symptoms recur but he's keeping me on Zofram for the nausea and because it kind of regulates everything.

Luckily, I already had a gastro doc. Had a colonoscopy and he said I had the longest colon he'd ever seen. TMI? LOL. It probably contributes to my gastro issues, lots of time&place for bacteria to grow.

I'll post later with some more detail. I really do apologize for the rant.

Very interesting discussions happening here.

I am one of "those people" for whom LDN didn't work....that I could tell.

Thankfully, I've never had pain and I believe LDN works best for that. I was taking it in the hopes of immune modulation - not only to help with my infections but my autoimmune thyroid disease.

Since my thyroid function continued to worsen during the 6 months I took LDN, I opted out of refilling the Rx to save money and instead spend that money on Buhner's herbs - many of which also modulate the immune system.

I can tell you this much based upon my research - LDN is meant to be taken in low doses. That's why it's called "Low Dose" Naltrexone.

The way LDN works for people taking it is not only as a result of the opiod receptor blockade but, more so, the body's response to that: an increase in endorphin production.

More opiod receptor blockage ala larger dose does NOT necessarily result in bigger increase in endorphin production.

If anything, the LDN dose is DEcreased if a patient experiences reduced effectiveness after being on a larger dose (4.5mg is the recommended dose for Lyme patients).

Krimpet,

Thank you for the info. Actually, I've been to sick to get on the forum or even do better research on the herbs I had been taking to see if they could have upset things.

Just a few things, but I'l start a new thread about SIBO so others can consider it.

I had looked into SIBO a while ago. I had gone to see a Function Medicine doctor because my DNA results were all over the map contradicting each other. I just wanted help in deciphering it to find the blockages in my methylation cycle so I could take the right supplements. She wasn't interested in that. She handed me a stack of papers with $1500 worth of tests to be done and said "I won't even consider treating you until I have the results of the tests". She then attempted to sell me supplements.

One of the tests was the test for SIBO. They told me to contact my Gastroenterologist to order it. Right, like i can walk into the doctor's office and say I want you to do this test. I don't have that kind of relationship with the doctor.

She also wanted me to do food allergy testing. I have a very limited diet because I know I have food sensitivities. When you cross of the things I know about, the list of things I could get information from the test are all things I don't eat. If you don't eat the food, you don't produce antibodies and get a negative reaction. What do i care about foods I don't eat. She insisted that its important because 'a dairy allergy could also indicate condition X'. Haven't had Diary in 18 months do how would the test get a positive result?

I did purchase some fish oil supplements. This was after I had discussed with her that my concern was that the fish oil might be rancid. I had done some research on them because of Burners book and I found out that to really be effective the fish oil must be fresh. Rancid fish oil does not help. She said oh, no mine are fine. Bought some. Got home. Smelled the soft gel and I could tell it was rancid. The manufacturer tried to cover it up by adding lemon citrus. They expected the lemon would over power the rancid smell. Wrong! Doctor you are fired.

cd, I didn't know that LDN can act as an immune modulator or affect thyroid. I'll have to call my primary and get my thyroid checked again.

Sorry, I get long and windy.
Have a good day,
Kim

Krimpet, thanks for the link. I expect that because I am doing it through a doctor insurance will pay but its good to have a back up.