Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 I have been alternating 3mg one night and 4.5mg the next... I seem to be better like this. For me, 4.5mg every night makes me extra stiff. I can't walk either. I'm PPMS, of course I think MS is such a subjective term that really doesn't mean anything! Who cares what it is called?! Your daughter might try this. I just had each separate prescription filled. My doc is very good about trusting me that I know what is working best for me. Marcie In a message dated 4/5/2004 11:10:48 AM Central Standard Time, b_hammel@... writes: Subj:[low dose naltrexone] dosage Date:4/5/2004 11:10:48 AM Central Standard Time From: b_hammel@... (paatti1) Reply-to: low dose naltrexone low dose naltrexone My daughter was doing very well on 3mg - has been on since September. But she still cannot walk - she has SPMS. Her dr. is trying the higher dosage of 4.5 - she has been on it since Monday, 7 days, and since the second day has been so tired she cannot do much of anything - sleeps most of the time. Otherwise no bad side effects, except for loss of appetite which I imagine comes with the tiredness. She wants to go back to the 3mg immediately. Her dr. wants her to try another few weeks. I find her not so mentally responsive and she is definitely not happy - she is usually a very upbeat and happy person, in spite of the ms. Has anyone gone through this and what are your suggestions? I think you are all more "in the loop" than any of the drs. Thanks for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 How can I get off this list? sherrie Ofiero Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 That's what I found too, and some other things. I didn't think it was a good time period to test it, unforeseen circumstances popped up. But 2 days after being back on 3.0 I realized 3.0 MG is the best dose for me, too. Bill M. here mentioned he things 4.5 isn't as powerful as 3.0... I think he may have something there. ----- Original Message ----- From: paatti1 low dose naltrexone Sent: Monday, April 05, 2004 13:02 Subject: [low dose naltrexone] dosage My daughter was doing very well on 3mg - has been on since September. But she still cannot walk - she has SPMS. Her dr. is trying the higher dosage of 4.5 - she has been on it since Monday, 7 days, and since the second day has been so tired she cannot do much of anything - sleeps most of the time. Otherwise no bad side effects, except for loss of appetite which I imagine comes with the tiredness. She wants to go back to the 3mg immediately. Her dr. wants her to try another few weeks. I find her not so mentally responsive and she is definitely not happy - she is usually a very upbeat and happy person, in spite of the ms. Has anyone gone through this and what are your suggestions? I think you are all more "in the loop" than any of the drs. Thanks for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 paattil, let me give you an example of my limited knowledge of endorphins yet accurate from a scientific perspective. Cocaine increases endorphin production which are the happy hormones but when you come down from the drug you are depleted and depressed. I lived with an addict many years ago and became knowledgable about the changes in brain chemistry. Perhaps your daughter is getting too high of a dosage and it is depleting her endorphins. They cannot be continually increased. There are not enough to go around. This is what makes an addict an addict. They do not get the same effect because their body cannot keep supplying the endorphins. Try going back to 3.0 and if her diet is not a good one try the Swank or Ashton Embrys diet for ms. With proper b complex, essential fatty acids , green drinks to help with the acidosis in her body (most of us are acidic) and your own research playing around with different nutrients I beleive her fatigue will be a thing of the past. Take care and God bless you both. Kathy ----- Original Message ----- From: " paatti1 " <b_hammel@...> <low dose naltrexone > Sent: Monday, April 05, 2004 1:02 PM Subject: [low dose naltrexone] dosage > My daughter was doing very well on 3mg - has been on since > September. But she still cannot walk - she has SPMS. Her dr. is > trying the higher dosage of 4.5 - she has been on it since Monday, 7 > days, and since the second day has been so tired she cannot do much > of anything - sleeps most of the time. Otherwise no bad side > effects, except for loss of appetite which I imagine comes with the > tiredness. She wants to go back to the 3mg immediately. Her dr. > wants her to try another few weeks. I find her not so mentally > responsive and she is definitely not happy - she is usually a very > upbeat and happy person, in spite of the ms. Has anyone gone > through this and what are your suggestions? I think you are all > more " in the loop " than any of the drs. Thanks for your help. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 paattil, I did not mean to come across like a know it all but I have a pretty extensive medical background and it makes physiological sense to me but maybe my views are not correct. Someone who is a patient of Dr. Bihari could present him with my theory and see what he says. It would be interesting. I also agree with Dr. Lawrence about taking the occassional few days off. I feel very strong in mind and body afterwards. However, I guess we are all different. Kathy ----- Original Message ----- From: " paatti1 " <b_hammel@...> <low dose naltrexone > Sent: Monday, April 05, 2004 1:02 PM Subject: [low dose naltrexone] dosage > My daughter was doing very well on 3mg - has been on since > September. But she still cannot walk - she has SPMS. Her dr. is > trying the higher dosage of 4.5 - she has been on it since Monday, 7 > days, and since the second day has been so tired she cannot do much > of anything - sleeps most of the time. Otherwise no bad side > effects, except for loss of appetite which I imagine comes with the > tiredness. She wants to go back to the 3mg immediately. Her dr. > wants her to try another few weeks. I find her not so mentally > responsive and she is definitely not happy - she is usually a very > upbeat and happy person, in spite of the ms. Has anyone gone > through this and what are your suggestions? I think you are all > more " in the loop " than any of the drs. Thanks for your help. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 I felt moved to respond because your description of your daughter`so difficulties with 4.5mg LDN struck a chord (actually several?) with me. I have been taking LDN for about 40 days, adjusting the dosage as I went along! i.e..-commenced with : 8 days at 4.5mg. then : 1 day zero. ~ : 12 days at 3mg. ~ : 15 days at 2.25mg. ~ : 1 day zero. ~ : 2 days at 1.5mg. I started at 4.5mg because I was " keen to get on with it " ! Although I had fleeting good patches, after 8 days I felt that the effects of 4.5 was somewhat too strong or fierce for my (rather fragile) SPMS system, so I eventually followed the course described above in my attempts to achieve homeostasis! I intend to investigate larger doses again when it feels appropriate. The precise size of the various doses was determined by the need to divide up 4.5mg capsules: Opening a capsule & tipping it`s content into your mouth (-a bit bitter!) leaves you with an empty capsule, then opening 2 other caps. & sharing the contents with the empty cap. one has three 3mg.caps! -In a similar way,for the smaller doses, one 4.5 cap. becomes two 2.25 caps. & finally, one 4.5 cap. becomes three 1.5 caps. -Emptying capsules into the mouth, IS bitter ,but one soon has plenty of empty caps. to use & you do get used to the taste! CAUTION! -dividing up the caps. like this successfully does require a degree of manual dexterity, patience & carefulness which unfortunately may be beyond the capacity of some. But if you can manage it (or has someone who can do it for you!) it does provide great freedom of choice re.dosage: ( & also incidentally, significantly lower costs!) The reason for the zero days was my understanding that Dr. Bob Lawrence (leading UK medical advocate of LDN) recommends taking 2 days out every 2 weeks: I didn`t follow this protocol fully as I am keen to maximize the effects of the LDN on my body a.s.a.p., but I may experiment with the zero days more fully in future. I am still very hopeful of a positive eventual long term outcome to the taking LDN, I have noticed improvements in bladder control, increased sensation in legs feet & hands ( this was subtle, I hadn`t actually noticed any diminution of sensation in the first place!): There does seem to be a gradual increase in strength in my legs taking place ( & consequent improvement in balance) & I feel REALLY good during my yoga! However, my experience seems to indicate that, if one is in the " progressive " stage of MS, considerable patience, & sensitivity to the delicacy of one`s own unique situation is desirable: Unless a doctor is unusually well informed about the effects of LDN , MS, diet, nutritional supplements (benfotiamine!!!...), exercise etc, & is also the possessor of great sensitivity/empathy/intuition etc., how can (s)he possibly understand what is appropriate as successfully as can a well informed layperson who is actually experiencing MS 24/7? (-Thanks to this amazing internet, some of us ARE quickly becoming " well informed laypersons~! " - AND working at keeping up-to- date in our knowledge!!!)........... Enough already! I am very grateful to the people on this site for all the info. & support I have received over the last 3 months or so: THANK YOU for sharing! May we ALL be healthy & happy! Gerald (SPMS) ----- Original Message ----- From: " paatti1 " <b_hammel@...> <low dose naltrexone > Sent: Monday, April 05, 2004 6:02 PM Subject: [low dose naltrexone] dosage > My daughter was doing very well on 3mg - has been on since > September. But she still cannot walk - she has SPMS. Her dr. is > trying the higher dosage of 4.5 - she has been on it since Monday, 7 > days, and since the second day has been so tired she cannot do much > of anything - sleeps most of the time. Otherwise no bad side > effects, except for loss of appetite which I imagine comes with the > tiredness. She wants to go back to the 3mg immediately. Her dr. > wants her to try another few weeks. I find her not so mentally > responsive and she is definitely not happy - she is usually a very > upbeat and happy person, in spite of the ms. Has anyone gone > through this and what are your suggestions? I think you are all > more " in the loop " than any of the drs. Thanks for your help. > > > > > > Quote Link to comment Share on other sites More sharing options...
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