I am beginning LDN (low dose naltrexone) tonite...

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, Jun 9, 2008.

  1. MamaDove

    MamaDove New Member

    I BEGAN THIS THREAD ON ANOTHER BOARD and thought I should post it here too being that this drug is touted to enhance the immune system...

    It has taken me 18 months of suffering through an infection obtained via sig then a severe reaction to Levaquin and then dvt's in left leg due to the inability to use it after the levaquin did its damage...My GI would not prescribe LDN but would gladly start me on Remicade tomorrow, even tho he KNOWS of the reactions I have to all meds...Every med I take I get the worst side effects or it has the opposite effect, for instance, Ambien kept me wide awake and abx seem to make more infections in me...They call me SENSITIVE among other things...

    So here I am fighting back from near death and all the damage that the infection and drugs did to me as well as severe tendonitis and neuropathies but I managed to live this long and am currently doing fairly well...I now consider myself 95% better from what I was dealing with yet noone would be able to live with the 5% of crap I deal with everyday...I know many know what I mean...

    I finally found a doc who has an open mind and is not looking to 'kill me' (his words)...He will give me anything I need for comfort (tho I cannot take any pain meds) do any test I ask for within reason, such as the CDSA 2.0 to determine what digestive issues I actually have that could be contributing to rectal bleeding...Currently I am off all meds and supps and just went to my compounder to give him the LDN script...He is ordering the pure powder due to my food allergies and will be making this into a liquid which will dispense 1mg doses so I can adjust accordingly...I am doing the CDSA this weekend and will start the LDN on Monday...

    I was thinking of having a daily diary on here so I can keep track, get advice along the way and help others be more informed on the success of LDN (I am very optimistic that this drug will be more than helpful in my case)

    As you can see in my profile, I have been diagnosed with many things;
    Ulcerative Colitis, Crohn's, Crohn's colitis,osteoarthritis (neck,knee,SI joint), severe fibromyalgia,chronic fatigue (not syndrome my rheumy says) Just plain sick and tired all the time. Had altered my diet after the first hospital stay in 2006 and just completed the Sage Medical Lab delayed food allergy testing whereby it was concluded that I should have listened to my 'gut' and stopped beef and dairy (I also believe in the MAP theory to some extent) also apples, carrots, oats,scallops, shrooms, brewers yeast,tomatoes, pumpkin...I eliminated them all last Monday and after 3 weeks been doing well, it was exactly 2 weeks that the bleeding ceased, just as they said it would, however, as my cycle began, the rectal bleed began again, sounds like endometriosis to me (been our theory since day one) ...My new doc, a proctologist, does not feel I am dealing with Crohn's...I look too healthy!!! He has recommended treatment for hemmies, fissures, etc...all for locally rectal bleeding issues...Of course he would like to do a colonoscopy but I am also dealing with severe PTSD from my 3 hospital stays, mistreatment nightmare so I MUST put that on back burner for now and again, listen to my gut, which 'guided' me to have the CDSA, the allergy testing and beginning the LDN...I have gotten all this accomplished in 1 month after seeing multiple docs over 18 months but one is in cahoots with the other and they stick together...To heck with the patients needs (and wants), it's their egos that come first...
    I had been in long remissions since 1995 when I had my first bout of UC due to NSAIDS and zoloft combo, then a new thing emerged, rectal bleeding with start of menstrual cycle...sorry guys

    Trying to have that diagnosed and my new proctologist would like to schedule the scope around that time due to endometriosis issues...Could be rearing its ugly head again (had 4 lb mass removed from the left side a year prior to the UC diagnosis...I swear this is all connected somehow, but how, and how do I stop it and/or make it go away...

    So join me on my journey with LDN, hopefully to better health for me...Finally...Haven't worked since 2004, not that a working individual is of more importance, but it seems we put such importance on the "what do you do?" in this country, than who we actually are and what we actually contribute...Working only enabled me to pay the doctor bills on time, now I only pay those docs that actually listen and help me, what a concept huh? Well I am starting to stray from the reason for my original post but I tend to type what's in my head at the time and dealing with PTSD and very negative experiences with physicians esp. the past 2 years, I cannot help myself...So forgive me for the length of this and check in from time to time...

    I am a firm believer that only WE that suffer from these illnesses will actually find the 'cause' and the 'cure' for what ails each of us...Each bit of info on here helps someone, somewhere...Let's hope 2008 is a better year for all of us!!!

    Peace to all~MamaDove
  2. victoria

    victoria New Member

    I've always thought this was an interesting possibility that's been underexplored / ignored ...

  3. Slayadragon

    Slayadragon New Member

    Interesting, please do share your experiences.
  4. SGR

    SGR New Member

    I hope you have a good response to this. I have been watching as others use it. I think it will go a long way in calming the inflammation down that has taken over your poor body. I know what you mean about PSTD from seeing doctors and being in hospitals. It's a great way to feel helpless. Good luck to you, and good for you for shifting diet. I think that makes a big difference. Hang in there - you are blazing trails for others.

  5. cbs1234

    cbs1234 New Member

    I had rectal bleeding for about 3 years. They put me through every test in the book and found nothing. Then, they told me to stop eating all dairy. The bleeding cleared up in 2 weeks. That was 12 years ago. If I cheat and eat a piece of pizza or a scoop of ice cream (very, very rarely), the bleeding comes right back.

    In other words, my bleeding was due to severe lactose intolerance.

    If you haven't tried cutting out dairy, you might want to give it a go.
    [This Message was Edited on 06/14/2008]
  6. kbak

    kbak Member


    I've been interested in LDN for a long time but haven't taken it. I'll be VERY interested to see how you do on it. Please keep us informed!

    take care,
  7. MamaDove

    MamaDove New Member

    Hi everyone,

    Well, tonite is the nite...About 10pm, I will begin LDN...

    I am nervous most def because of all the issues I have had with meds but as I said before, I muscle tested when I picked it up at the compounder and it was a 'go' so I will trust MY Healing forces and begin this evening...

    cbs1234 asked if I had cut out all dairy-absolutely!!! That is the first thing an IBD patient must do (even tho the doctors say diet does not matter, bull dinkies on them) and people with all our dd's need to educate themselves on what is in foods ( I say foods because I only eat what nature makes and what is still considered foods) I cannot believe people are still ingesting sodas and processed foods not to mention fast food, take out and drive thru coffees/lattes. What is everyone thinking? Not that I am judging, I'm not, just thinking out loud...:)

    I have traveled this road of rotten health for 13 years before I woke up and stopped trusting all these MDs and the like and began trusting in ME again...I only began to heal when I got rid of all the meds and whatever the docs recommended, they were poisoning me...;(

    Well nuff of those memories...Tonite I begin a new journey and with much faith I am attempting to find what works for me...My diet and lifestyle are crystal clean and so I add the LDN at the best possible moment for the best possible results...Many find that the following day is a completely new one, without their illness/es in the forefront...I would like one minute of one day where I can get comfortable enough, long enough and concentrate enough to just watch a TV show...Just a half hour show...I am not asking for much, am I? People take much for granted, esp. today...I would just like to enjoy one full day, just one!

    So I will post on here my experiences with LDN and with a positive attitude am looking for positive results beginning day one...I have allready envisioned what tonite will look like...I will get my pear juice and my bottle and syringe and lie down with my husband and while looking into his eyes, I will drink this down and settle in for the night...I can see the anxiety all over his face but he is also ready for this journey...We have been to hell and back and are looking for a slice of heaven in this little bottle (unfortunately the bottle is similar to the one that held our boy Moose's epilepsy med, so this will likely be something more to deal with than just starting the new drug)
    But we will do it together as we always do...

    SO nite nite for now...will check in tomorrow...Prayers and good wishes appreciated...Don;t ahve to actually post, know I will 'feel' them...

  8. SnooZQ

    SnooZQ New Member

    I truly hope that the LDN helps your UC & other symptoms. It may even take the edge off of the PTSD.

    I hope your "adjustments" to this med are mild or nonexistent. (A small % of people on LDN seem to have sleep anomalies for a few days, which go away as the body adjusts.)

    Did you decide to go with the liquid, and to start at 1 mg?

    I would be very interested to hear how you do, MamaDove. I have an appt. in 3 days with the only doctor in my town who Rxs LDN ... hopefully he will see fit to allow me a trial.

    Best wishes.
  9. MamaDove

    MamaDove New Member

    10pm~took 3mg liquid LDN in pear juice and went to bed

    Midnight~awoke from 'vivid' dream (I now know what a 'vivid' dream looks like, much like the 'visions' I used to have)Trip to the bathroom my gait felt unsteady, much like floating, oh boy...

    3:55am~horrifying vivid dream but when I awoke abruptly I realized immediately it was a dream and didn't get up to check my yellow lab (it was horrible so I will spare the details)

    5:30am~awoke and went to bed (I had set myself up in the den so if I was up all night my hubby could still get a nights rest)

    6:30am~bathroom trip, pure liquid blood, oh joy!

    This morning has basically revealed that taking this drug has caused me much anxiety, first cos I am now curious as to why it would do this to me at such a low dose and second, I feel as if I am someone else looking into ME and attempting to figure out why this girl is suffering so...


    I must get breakfast ready but I'll be back~MamaDove
  10. MamaDove

    MamaDove New Member

    I thought before I wrote that and knew that likely someone would notice a possible 'issue'with that statement and I think I could try to clarify what I was trying to say somewhat better... I have dain bramage from levaquin reaction so sometimes things come out not quite as they should and most may not understand what I am saying but I continue to write what I 'feel', 'see' and 'hear' however strange...It's how I cope, I MUST be truthful, no matter how bizarre...

    I meant exactly what I wrote!!! Hence, the comment "strange days indeed"...For the past 18 months or more I have constantly been searching for answers...Lastnight and this morning it became extreme to the point I felt overcome by the fact that I feel like I must be the sufferer and the healer...I feel as if I will be the only hope I have in finding a cure for myself and I take it too seriously at times...You know when you are so sick and there always seems to be someone that comes along to help you get well again, even if it's just making you chicken soup...I feel I must do it all...And I guess with all the stuff I have been through in the last few years plus starting this new med and all the hopes and fears of it, I got overwhelmed again...

    Nothing to fear tho, I am dealing...Tonite I will lower the dose and take it from there...PTSD surely does not help when adding vivid dreams to your list of what ails you...But I must keep trying with LDN, if no change with the lower dose I just may have to discontinue...That will be another something to deal with...Seems like something gets added on every day and nothing gets removed, ya know...

    Thanks for 'catching' that and advising...I appreciate it, but so far, so good...

  11. victoria

    victoria New Member

    I admire your courage for trying it again, altho I guess I would too since you're lowering the dosage... I will be keeping my fingers crossed for you, I hope you see some benefits ultimately.

    all the best,

  12. JenniferAnn539

    JenniferAnn539 New Member

    Good luck with the ldn. I hope it helps.
  13. 013101

    013101 New Member

    I've been trying low dose naltrexone (LDN) for almost eight weeks. I am feeling some positive effects -- a little less sick, a little more energy, and the migraines that have plagued me since getting CFS have cleared up. I haven't posted on this board about my experience yet because it's too soon to know if it will turn out to be a positive experiment, but I want to share a couple of things with mamadove to help her get started.

    You should lower the dose from 3 mg. Some people can start with that dose, but given your nighttime experience, it doesn't sound like you are one of those people. After eight weeks I have just started to take 2.25 mg. (I have compounded capsules of 1.5 mg. and of .75 mg.). I hope to gradually work up to 4.5 mg. but expect it to take months.

    Even at 1.5 mg., I had terrible sleep disturbances -- both terrifying nightmares and poor sleep quality. People said they would go away in a couple days or, at the most, in 2-3 weeks, but they didn't. This is a rare reaction, but that's what happened to me and a few people on the LDN Yahoo Group report the same difficulties.

    My choice eventually became to stop the LDN altogether or to move to daytime dosing. I chose the latter even though many people will tell you that LDN only works if you take it at night. However, there are others in the LDN Yahoo Group who also take LDN in the morning due to severe sleep disturbances. It works for them and it seems to be working for me.

    My advice would be to take 1.5 mg. (or even .75 mg.) at night and, even if sleep disturbances clear up, don't raise the dose for several weeks. As I said, I have moved to daytime dosing and I am very hopeful so far that LDN is going to help me.

    Toni [This Message was Edited on 06/18/2008]
  14. MamaDove

    MamaDove New Member

    Hi Toni,

    Thank you for taking the time and telling me about your experience...Daytime dosing? I read about it on one of the groups but kept it in the back of my mind and pushing a more positive attitude to possibly 'avoid' the nightmares...didn't help :)
    I chose not to take it lastnight, just didn't feel right, but tonite I will begin again at 1 or 1.5mg, if I have the dreams again I may have to go to daytime dosing...
    With the issue of PTSD and anxiety for me, I cannot risk further thoughts and memories...As it is, I can't seem to get the two dreams I had to leave my head...One was seeing my Mom holding the bottle of LDN and telling me she had cervical cancer (she has been gone since 1994 and there was always a question where the cancer began and I took it very hard and searched for years to find what actually happened to her) and the second was seeing my yellow lab Dayne, Mama's Boy, dead in my yard...Not something I should have added onto what I have to deal with allready...
    Again, I have always had 'visions', esp. of the future, so this LDN may just be enhancing things for me and while it could be informative, I am not at a point in my life that I can handle this with ease, no matter how strong I *think* I am...
    So I will give my doc a call today and my compounder to see if there are ANY additives in there at all and then I will begin again...
    Thanks everyone for your support, I knew I could count on everyone here...
  15. MamaDove

    MamaDove New Member

    Took the 2nd dose lastnite...1mg...

    I was quite comfortable but all night realized that I was awake many times...I didn't count but it was alot...Having been awake for what seemed most of the night, I do feel rested with excess energy...

    I had ONE loooooong dream that was quite detailed, not scary tho (thank goodness)seemed to go on for most of the night too, I like those kind :)

    The major thing I noticed on LDN, just taking it twice, is that while I am awake I can feel different parts of my body, isolated from the rest...Like lastnite I could feel my knees, liver, kidneys and spine, distinctly and seperate from all others as if there was nothing around it but a comfy cushion of air...NO INFLAMMATION...And what immediately comes to mind is a pac-man like thingee chomping away at all the inflammation and taking it away...Both Tuesday and this monring I awoke and looked at my knees (the fat packs on the inside that are always tender and burning) and they were gone...yes, gone!!! Low back feels the same way and I can visualize my sacro-iliac joint that has always been problematic...

    Now If I can only get this bleeding to stop...So for now, it's 1mg every nite til I work up the courage to increase.

    Have a great day everyone, Peace~MamaDove
  16. SnooZQ

    SnooZQ New Member

    Sounds like the LDN is starting to work, MamaDove. And perhaps that lower dose of 1 mg. is a good dose, for now.

    From what I've heard, it can take weeks to months before you know the full impact of the LDN on UC. That's because the med works subtly, the increased endorphins affecting various feedback loops that link into the immune system. But with some studies showing up to 80% of those w/UC showing improvement on LDN, it's a good bet that it might help YOU, too.

    Best wishes.
  17. victoria

    victoria New Member

    It seems like it may work quite well for you over time?!

    Yes, please keep us updated on how you do, MamaDove...

    all the best,
  18. MamaDove

    MamaDove New Member

    A wonderfully restful night overall...With special dreams of my boy Moose (see my profile)...I have only had scary dreams of him since he has been gone so to have a happy one is totally awesome!!! He was running and playing and jumped into his Papa's arms... LDN gives me wonderful dreams now...A healing effect in itself, I feel.

    As far as how I feel...Rectal bleeding stopped as of lastnite but BM is watery...Should be interesting to see what this bleeding's cause was all along...Can't wait til I figure that out...Swelling down all over too, feel like a 'powerhouse' today but I am taking it easy and slow, I am all too familiar of overdoing and then crashing so I will go slow...

    So far so good with LDN...Amazing!!!

  19. victoria

    victoria New Member

    How are you doing with the lower doses now............. inquiring minds wanna know....


  20. simonedb

    simonedb Member

    hey mamadove, I am new to this board so just reading your post. Interesting I am sensitive to all the same foods you mentioned, I just had the alcat test.
    I have been wondering about LDN for myself. I have MCS and a p450 issue and can't tolerate ssris, snris, tricyclis, lots of supplements etc but have found over the years that propoxyphene works pretty well for energy and pain so on moderate dose. but am starting to feel a little brain dead and wondering if its related to meds or cfids, hard to say.
    Does anyone know if LDN tends to be easy on MCS folks and p450 issues?
    Also,does anyone know how hard/easy it is to switch over from an opiate to LDN? What if LDN can't be tolerated, how quick could I switch back to the propoxyphene and would it still work as well and would there have to be anumber of days of pain in the process? A few years ago they tried to switch me to ultram and it helped the pain right away but within a week I didnt like it as it made me look high all the time and turned around my sleep schedule and effected my vision. I was able to switch back to propox but sleep was messed up for months after.
    Anyway, I am very curious about your progress mamadove as we seem to have some of the same sensitivities but I don't have the blood issue. I almost had endometriosis long ago but acupuncture and cutting out coffee and cola products got rid of symptoms.