Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

Low dose Naltrexone

Discussion in 'General Treatment' started by Cort, Jul 22, 2009.

  1. DocCole

    DocCole

    Messages:
    16
    Likes:
    18
    I was diagnosed with gulf war syndrome from serving in Iraq. Gulf War syndrome differs depending on the person. In my case I have fatigue, pain in my intercostal muscles, swollen cervical lymph nodes for years (had one removed), headaches, memory problems, stuff I actually learn I remember pretty well but incidental stuff during the day I can't remember for instance I know my daughters birthday but I don't remember being there when she was born, hives, pressure urticaria and more.

    All my tests have been normal. ANA several times, biopsies of skin and upper GI biopsysies and lymph node, every blood test known to man kind, tryptase. I have had so many work ups by so many specialists and nobody can come up with anything other then Gulf War Syndrome from exposures to chemicals or viruses in Iraq.

    OK...now that I've explained all that. My P.A. set me up today to try LDN. I have researched it over the last several months and it looks promising for my symptoms.

    My P.A. is very knowledgeable and up to date on alot of the less mainstream treatments. And she uses alot of natural treatments first.

    The problem I have is she told me that she has the best luck starting people out at 4.5 MG right off the bat. I asked her about all the problems I have read here with not starting at a lower dose and she said that she has many people on LDN and they all started at 4.5MG and had minimal side effects.

    I was an Army medic and I have alot of medical knowledge and I try to research treatments before I try them.

    What do you guys think about starting at 4.5mg likes she suggested?
     
  2. DocCole

    DocCole

    Messages:
    16
    Likes:
    18
    And just to clarify gulf war syndrome and CFS are very similar if not the same illness. Most of the symptoms overlap and the treatments seem to be very similiar between the two.
     
  3. purrsian

    purrsian Senior Member

    Messages:
    333
    Likes:
    828
    Many of us start on low doses due to history of sensitivities to medications. Do you have this at all? For example, higher likelihood of side effects when starting various drugs, worse intensity of side effects, troubles with side effects when increasing or decreasing doses.

    I started slowly because I have had troubles changing doses on my antidepressant (increases depression/anxiety severely), problems taking salt tablets (bad hypotensive and constipation) and have had many issues and sensitive to topical medications and nasal sprays. Also, one of the most common side effects of starting LDN is a bit of insomnia in the beginning, and I really didn't want that when I struggle with energy so much anyway. I think I started at 1.5mg and didn't have any issues at all.

    I don't think there is any downside to starting lower, aside from giving up from not seeing any results. I got up to 4mg eventually, but still saw no results at all (positive or negative) after many months of increasing, so I stopped. Was a pain to get it compounded every time and just felt like it literally did nothing to me.

    The problem with doctors insisting a certain dose is fine to start on is that many don't understand the increased sensitivities common in CFS. I'm not sure if gulf war syndrome also has this - perhaps it's something worth investigating and also have a think about if you've had sensitivities to things before. While she's had the best luck starting most people on 4.5mg, it would be interesting to know if many of them at CFS or gulf war syndrome.

    If you're worried, perhaps you could say you would feel much more comfortable starting on a lower dose for just a few weeks, to see how you go. Not necessarily super low, but low enough that you won't be as worried. Unless there is an actual reason why she thinks starting at 4.5mg is the best - other than it's what is most commonly done.
     
  4. DocCole

    DocCole

    Messages:
    16
    Likes:
    18
    Thank you for the reply! I am sensitive to medicines and chemicals in a slightly different way from most I believe. Certain chemicals cause an almost instant increase in the size of my cervical lymph nodes and also pain in them. Also cause flu like symptoms if I have to much exposure. Chemicals such as brake cleaner, carburetor cleaner, oil based paints and stuff like that. I am fine with most household cleaners and perfumes and similiar stuff its just the really harsh stuff that bothers me.

    As far as medicine sensitivity. Any medicine that messes with my brain chemicals such as SSRI or SNRI medicine causes almost a serotonin syndrome like reaction but not to the point of needing emergency treatment. I lost 2 days of knowing who I was or where I was when I first tried an SSRI. I did build a firewood shed in those 2 days but I couldn't tell you how I did it. Most other medicines are fine.
     
  5. purrsian

    purrsian Senior Member

    Messages:
    333
    Likes:
    828
    Well the up side to that is that SSRI and SNRI are the sort of drugs that like to cause problems, so it doesn't necessarily indicate your super sensitive to meds in general. But that does sound like a crazy reaction with the 2 days lost - although you mentioned memory problems so perhaps it was an aggravation of the existing symptom? It is interesting that you have lymph node swelling with exposure to certain chemicals - it will be interesting to see if this changes with LDN re-regulating your immune system.

    I'm not sure if LDN affects brain chemicals, so it might be something to look into when assessing whether to try the full dose or start lower. It's easy for doctors to just prescribe everything as recommended, but conditions like CFS have different needs and in my opinion, it's better to be over-cautious than cope with potential side effects. But that's just me and I hate side effects lol
     
    DocCole likes this.
  6. DocCole

    DocCole

    Messages:
    16
    Likes:
    18
    We have a great compounding pharmacy local here where I live. I was able to pick up my LDN yesterday and I talked to the pharmacist as well. Her advice was to try the 4.5 and let her know if I have issues and if I do then she can make some smaller pills to start out with.

    So....last night I waited until I was falling asleep tired which was about 9pm. Then I took one of the 4.5mg pills. I fell asleep right away. Slept great until about 430ish. Woke up one time that I remember at about 3 but fell right back asleep. I normally wake up about 530ish naturally and sometimes wake up earlier.

    I would say that this did not seem to affect my sleep very much the first night. Also normally when I wake up I feel like I got hit by a freight train, sore, tired, hard to get out of bed. I'm still laying here in bed as I type this but I feel like I have some energy. Probably a coincidence as I don't believe it could be helping already and I do have some good days naturally but only time will tell.

    I am hoping that I can go thru the day with none of the side effects that are reported but we will see.

    Also I'm hoping to judge this medicine more on the physical aspects such as reduced lymph node size, lessening of hives and urticaria and not so much on the possible mental aspects. While the mental aspects will be much appreciated it's easier to quantify improvements in problems that I can see.
     
    Last edited: Jan 5, 2018
  7. fireflymd

    fireflymd Senior Member

    Messages:
    109
    Likes:
    56
    I find that LDN works well for me in the first week or two, almost miraculous (like I went around my office telling everyone I had found “the answer”—ha!), and then I gradually descend back into debilitating fatigue.

    I am now trying to see if skipping days will work, since both times I started it (months apart) I noted initial benefit.

    I am now taking it in the morning, since the last time I started it I had a week or two of insomnia. Then I would have very vivid, exciting dreams which was great, but these started to become vivid, scary dreams. No insomnia or bad dreams so far with taking it in the morning.

    I hope you will keep us updated with your response to it.
     
    DocCole likes this.
  8. DocCole

    DocCole

    Messages:
    16
    Likes:
    18
    So far today I have definately noticed an improvement in something. I don't want to call it energy. I really don't know how to explain it. It's almost like I have mild euphoria....and even that's not the right word. Usually I struggle to stay engaged in conversation and zone out alot. Also I have to force myself to do things and usually I have to work on something for 10 minutes or so and then chill out for a half hour because of either physical fatigue or mental fatigue.

    Today I have had zero trouble staying engaged in conversation. I helped my dad move some sliding glass doors about a 2 hour round trip from my house and the whole trip was enjoyable and I had no problem helping him.

    It could be that I am in an unusually good mood today with the hopes that this will help. It could be a placebo effect. It could be that it's actually doing something. Only time will tell.

    And so far the only side effect is absolutely zero appetite which is actually a good side effect for me. I need to lose between 20 and 30 pounds. I am my healthiest right around 200 pounds. Very muscular from military and fire department work.
     
    fireflymd likes this.
  9. DocCole

    DocCole

    Messages:
    16
    Likes:
    18
    Ended being wiped out and falling asleep about 730 last night. Woke up about 4am. I am waking up earlier then normal. I don't know if I would call it a side effect necessarily. With this medicine I am waking up completely rested which I have not done is years so I think my body is just done with sleeping earlier while I'm taking this. Might have to adjust my sleeping pattern so I stay up a little later and sleep until 6am or so. For years my morning constitution has required some caffeine a couple hour wait and a pep talk. The last 2 morning things have been flowing smoothly to put it polite without any caffeine or anything. Still nothing that I would call a bad side effect.
     
    Last edited: Jan 6, 2018
    jpcv likes this.
  10. ahmo

    ahmo Senior Member

    Messages:
    4,438
    Likes:
    6,792
    Northcoast NSW, Australia
    @DocCole I started by opening a capsule and using a match-head amount. That gave me detox symptoms. (My remedy for that was coffee enemas.) After a few days I doubled that, and continued on this way. Took me a long time to work up to 1mg. Eventually I stabilized at 4.5. Given how much is now being revealed as inflammatory aspects of disease, I think LDN is a brilliant addition. Good luck.

    (I make mine from full strength naltrexone tablets, diluted. Very cheap. alldaychemist.com)
     
  11. DocCole

    DocCole

    Messages:
    16
    Likes:
    18
    Thanks for the information. I think I got lucky starting at 4.5mg. This is the start of my third day and I am having zero negative side affects.

    I am still getting hives but I have not had to take antihistamines since I started the LDN and I have to take antihistamines daily normally. The hives are probably diminished at least 50% maybe or more. I'm hoping they go away completely with time.

    My lymph nodes are still the same size as far as I can tell so no improvement there. Hard to verify without an ultrasound.

    I have actually been sleeping alot better then nornal until about 3 am when I have to force myself to go back to sleep.

    Activity level is increased but I crash harder around 7 pm which I think contributes to me waking up earlier. Today I woke up at around 3 the first time and for the day around 530.

    I have noticed a marked improvement in my mood and drive to accomplish things. I am really hoping that these improvements will compound the more I use this medicine.

    Also it seems like my memory is slightly improved. I'm questioning whether or not what I am remembering is actually stuff that happened but I recalling things that I would not normally.
     
    Last edited: Jan 7, 2018
    Gondwanaland likes this.
  12. panckage

    panckage Senior Member

    Messages:
    662
    Likes:
    793
    Vancouver, BC
    I found the exact same thing. Skipping days didn't seem to help me though. 2 weeks on 2 weeks off seemed to work best for me...bit only for a few months. Now when I take LDN I'm not sure I experience anything positive form it anymore
     
    fireflymd likes this.
  13. DocCole

    DocCole

    Messages:
    16
    Likes:
    18
    I am close to a week in on my LDN so I though I would update.

    My hives have been really bad since the start of this year. A couple days after starting this medicine my hives greatly improved. I do not have to take allergy medicine anymore. I have only had to use steroid cream 1 time per day each day and only on a very small area.

    My lymph node have not been painful at all. In fact they went from being something that bugs me all day and it's hard to get out of my mind to the point of only noticing them being slightly irritated if I actively think about them.

    My scars were very itchy and would swell up very easy and now I don't even notice they are there.

    My energy level seems to have leveled off l. I went from having zero energy to a whole bunch to about half way in between.

    I am still sleeping pretty good until about 3am and then I toss and turn until I get out of bed.
     
  14. debored13

    debored13 Senior Member

    Messages:
    790
    Likes:
    555
    Vermont, school in Western MA
    has anyone else here experienced LDN causing blood pressure issues?
     
  15. DocCole

    DocCole

    Messages:
    16
    Likes:
    18
    My blood pressure dropped from an average of 116/76 to around 108/70.

    Not significant and a lot of people would consider it a good thing unless of course your having dizziness, fainting, things like that?

    Is your elevated since taking ldn?
     
  16. debored13

    debored13 Senior Member

    Messages:
    790
    Likes:
    555
    Vermont, school in Western MA
    yes elevated. well i can't tell for sure since ihaven't done a controlled experiment, but i had elevated readings recently and i felt tenser since starting it
     
  17. DocCole

    DocCole

    Messages:
    16
    Likes:
    18
    I would do some testing. Also look at things like if your sleep pattern is interrupted which could cause a temporary elevation in BP.

    Also in theory an increase in endorphins can cause a temporary increase in BP while your body adjusts. I am not sure how long you have been on LDN but I noticed being wired the first few days and I intentionally did not check my BP because I knew it was temporarily elevated as I could feel how much more hyper I was.

    I would be curious to know how long you have been on LDN, what your normal BP is compared to what it is now, and if you are taking anything for BP that the LDN could be interacting with that has not been established by the limited LDN medical trials over the years.
     
  18. EsetIsadore

    EsetIsadore

    Messages:
    45
    Likes:
    54
    My first trial with LDN (1.5 initial, building up to 4.5 over the course of three weeks) went poorly (severe constipation, thirst, and insomnia). I stopped after one month.

    I re-started a week and a half ago. I’m taking .5 mg every three days in the morning. It’s not caused the previous symptom, thank goodness. However I’m in high amounts of (primarily leg and back) pain the days I take it. I have heaviness and buzzing paresthesias in my legs. My speech worsens, with apraxia, dysarthria, and aphasia exacerbates to some extent.

    Do those reactions sound familiar to anyone else?
     
  19. DocCole

    DocCole

    Messages:
    16
    Likes:
    18
    I had almost zero side effects. I started at 4.5mg right off the bat.

    I am in no way suggesting or recommending people try to start at 4.5mg but I find it really strange that all sorts of people have really weird and bad side effects when they start really low.

    I wonder if for some reason the side effects are less when starting at higher doses??? It doesn’t make sense that it would work that way but stranger things have happened.

    When i used full strength naltrexone for a few of my guys in the military for substance abuse problems they rarely had side effects and we are talking a lot larger dose then we are all taking here.

    It’s weird how the human body all responds differently depending on the person.
     
  20. JeanneD

    JeanneD Senior Member

    Messages:
    130
    Likes:
    371
    Anything is possible, but the experience of a number of ME specialists is that it is definitely the other way around for most PWME.

    I, too, have wondered why generally healthy people can take much larger doses of naltrexone for substance abuse, yet PWME have to start with minute doses and work up slowly to avoid bad side effects.

    I suspect the side effects/dosing issue is specific to each individual's biology/physiology and their particular set of symptoms.

    When my daughter and I started, we were advised to start very slowly and noticed side effects if we increased too rapidly. There is no way we could have started at 4.5mg, but we ended there and have no side effects.

    My guess is that we PWME tend to be sensitive to meds and have a lot of things going wacky in our bodies, so we often have to adjust our bodies slowly to medications that healthier people can take in larger doses right away. That could be because we may have many compensatory mechanisms going on that will be altered if we change something that has been going wrong and all those systems need to rebalance.

    LDN doesn't seem to affect pain or sleep for us, but is having a large impact on inflammation and cognitive problems. My inflammation markers, which have been weird for years, have stablized nicely.

    Perhaps sensitivity to the med depends on where it is having the most impact for the individual -- where the inflammation is most severe.
     
    EsetIsadore and DocCole like this.

See more popular forum discussions.

Share This Page