Re: Re: ldn and incompatible meds

[Guest guest]

I will check with my cousin, who has narcolepsy, as to what she takes. I do remember her telling me that she quit taking Provigil. (maybe Lexapro?) I will see her tomorrow.

I take 1000mg Keppra 2 x per day for spasms and pain, and it works better than anything else I ever tried.

Marcie

[Guest guest]

Hi...my name is Ric and I recently joined the list...I am hiv+ and have been for 16 years...so far everything is just fine (knock on wood)...but I had an appointment with my infectious disease doctor on thursday and inquired about LDN...she replied she had never heard of it...I know maybe being in Arkansas there might be a lag as far as information...but she attends the confrencense in SF and across the country when it come to HIV and Aids...shouldnt they have heard of LDN...and is there a link I can give my doctor for her to actually look at and see what I am talking about...thanx...hope everyone is doing ok...thanx for your time....take care Ric

[low dose naltrexone] Re: ldn and incompatible meds

>> Hello LDN Advocates, > > I've been fortunate enough to have started ldn tx for MS dx in June 05. Began ldn tx on 10/29 (homemade) - 1/2 tab crushed in 25ml H2O 3ml in juice @ 11:pm nightly. > > By Monday 10/31 it seemed like I could think more clearly, and B & B "normal" for first time in months! Same on each subsequent day. The down side however, waves of extreme fatigue intermittently throughout the day with pain and increased stiffness, can't keep my eyes open during the peak fatigue times.> > I thought I'd eliminated any contraindicated meds, and did not find those which I must take on the incompatible list, but it is possible I've overlooked something, "foggybrain" and all. I'll list all meds and would very much appreciate it if someone can let me know if I am doing something wrong or if what I am experiencing is expected, and will hopefully, resolve with time.> > Meds: Norvasc 10mg qam, Bumetanide 1mg qam, Tramadol 50mg bid, Provigil 400mg qam/ & 200mg PRN., > and numerous vit and min supplements. Also regular aspirin or arthritis formula powders for degen. disc. and joint - osteo arthritis. Was using Spiriva for COPD, but stopped before starting ldn, that's been a struggle. I completely believe in ldn so the fault must be in one or more of the above.....Your guidance is needed and appreciated. Thank you. > > Georgina> ==========In many people taking LDN they have found it to act as a mild diuretic so you may need to adjust your other diuretic. Your extra fatigue could be due to that and maybe not. If possible try coming off as many of your meds as you can. I understand your BP meds are vital. You might want to try later down the road going without the Tramadol and Provigil and see how you feel. See below.

For those of you in the first 3 months of LDN therapy Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains why the temporary increase in MS symptoms.When starting this LDN(Low Dose Naltrexone) therapy in the treatment of MS, there may also be some initial transient, though temporary, increase in MS symptoms. Experience in using this method has demonstrated most commonly, such as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams, tiredness, fatigue, spasm and pain. These increased symptoms would not normally be expected to last more than seven to ten days.Rarely, other transient symptoms have included more severe pain and spasm, headache, diarrhea or vomiting. These additional symptoms would appear to be associated with the previous frequent use of strong analgesics, which effectively create an addiction and dependency, thus increasing the body's sensitivity to pain. This temporary increase in symptoms may also perhaps be explained when we consider the manner in which this drug is expected to work.In addition, because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit a full list of the drugs you are presently taking so that their compatibility may be assessed. In addition, because LDN will also block the analgesic effects of any opiate drugs (includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently being taken, the use of LDN will initially greatly increase the level of pain experienced. It is therefore advisable that any opiate-like drugs be discontinued at least two weeks before this treatment is initiated. When starting the treatment it is essential that any untoward or adverse side-effects are reported immediately so that the treatment process can be further assessed and, if necessary, modified. Initially, MS occurs due to a reduction in the activity of the controlling influence of the suppressor T-cells within the immune system. During an acute relapse, the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4) T-cells tend to predominate. This is the situation most pronounced during an acute relapse but occurs similarly, but to a lesser extent, in chronic progressive MS. Under the influence of LDN there will be an expected increase in the overall numbers of T-cells but, because the CD-4, helper T-cells tend to predominate at this time, an increase in their numbers will expectedly tend to increase MS symptoms. It is only when the numbers of suppressor T-cells effectively & quot;catch up & quot; that the normal balance is restored and symptoms once again diminish and improve. Dr. M R LawrencePosted by

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[Guest guest]

Thanks . I tried to eliminate the tramadol last night, the pain awoke me several times, tried to do without it most of today but gave in about 3pm, pain and spasms were too much. It does not eliminate just alleviate, it helps enough to allow me to be somewhat useful. I'll try to cut down at first, see how little Tramadol can be taken instead of just stopping abruptly, should have done that first.

I'm afraid of eliminating the Provigil, I'm severely narcoleptic, also wonder if there is a link. Which actually came first the N or MS. Narcolepsy dx 10 years ago, but sxs most of my life; MS sx 30+ years, dx in 6/05. Read about a few others who have both, wonder how many others there are.

Provigil keeps me alert but has been blocked by certain pain meds, thus the Tramadol. It is the only pain med which has not interfered with effectiveness of Provigil. Catch 22 it seems. Trial and error time depending on the individual or is there a hard and fast rule? Did not think these meds were in those Dr. Lawrence listed, or did I miss something? Thanks again.

Georgina

Bren <TwisterAlley2@...> wrote:

>> Hello LDN Advocates, > > I've been fortunate enough to have started ldn tx for MS dx in June 05. Began ldn tx on 10/29 (homemade) - 1/2 tab crushed in 25ml H2O 3ml in juice @ 11:pm nightly. > > By Monday 10/31 it seemed like I could think more clearly, and B & B "normal" for first time in months! Same on each subsequent day. The down side however, waves of extreme fatigue intermittently throughout the day with pain and increased stiffness, can't keep my eyes open during the peak fatigue times.> > I thought I'd eliminated any contraindicated meds, and did not find those which I must take on the incompatible list, but it is possible I've overlooked something, "foggybrain" and all. I'll list

all meds and would very much appreciate it if someone can let me know if I am doing something wrong or if what I am experiencing is expected, and will hopefully, resolve with time.> > Meds: Norvasc 10mg qam, Bumetanide 1mg qam, Tramadol 50mg bid, Provigil 400mg qam/ & 200mg PRN., > and numerous vit and min supplements. Also regular aspirin or arthritis formula powders for degen. disc. and joint - osteo arthritis. Was using Spiriva for COPD, but stopped before starting ldn, that's been a struggle. I completely believe in ldn so the fault must be in one or more of the above.....Your guidance is needed and appreciated. Thank you. > > Georgina> ==========In many people taking LDN they have found it to act as a mild diuretic so you may need to adjust your other diuretic. Your extra fatigue could be due to that and maybe not. If possible try coming off as many of your meds as you can.

I understand your BP meds are vital. You might want to try later down the road going without the Tramadol and Provigil and see how you feel. See below.

For those of you in the first 3 months of LDN therapy Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains why the temporary increase in MS symptoms.When starting this LDN(Low Dose Naltrexone) therapy in the treatment of MS, there may also be some initial transient, though temporary, increase in MS symptoms. Experience in using this method has demonstrated most commonly, such as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams, tiredness, fatigue, spasm and pain. These increased symptoms would not normally be expected to last more than seven to ten days.Rarely, other transient symptoms have included more severe pain and spasm, headache, diarrhea or vomiting. These additional

symptoms would appear to be associated with the previous frequent use of strong analgesics, which effectively create an addiction and dependency, thus increasing the body's sensitivity to pain. This temporary increase in symptoms may also perhaps be explained when we consider the manner in which this drug is expected to work.In addition, because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit a full list of the drugs you are presently taking so that their compatibility may be assessed. In addition, because LDN will also block the analgesic effects of any opiate drugs (includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently being taken, the use of LDN will initially greatly

increase the level of pain experienced. It is therefore advisable that any opiate-like drugs be discontinued at least two weeks before this treatment is initiated. When starting the treatment it is essential that any untoward or adverse side-effects are reported immediately so that the treatment process can be further assessed and, if necessary, modified. Initially, MS occurs due to a reduction in the activity of the controlling influence of the suppressor T-cells within the immune system. During an acute relapse, the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4) T-cells tend to predominate. This is the situation most pronounced during an acute relapse but occurs similarly, but to a lesser extent, in chronic progressive MS. Under the influence of LDN there will be an expected increase in the overall numbers of T-cells but, because the CD-4, helper T-cells tend to predominate at

this time, an increase in their numbers will expectedly tend to increase MS symptoms. It is only when the numbers of suppressor T-cells effectively & quot;catch up & quot; that the normal balance is restored and symptoms once again diminish and improve. Dr. M R LawrencePosted by

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[Guest guest]

Thanks Marcie,

I'll look into the Keppra, but I've never tried another Narcolepsy med that worked for me as well as Provigil. Not only did I trial it but it has never adversely effected me, it has however, been blocked by most pain meds, and therefore loses it's effectiveness. Maybe the combination of meds with ldn is causing this?

Thanks for your time and suggestions.

Georgina

marciemjm@... wrote:

I will check with my cousin, who has narcolepsy, as to what she takes. I do remember her telling me that she quit taking Provigil. (maybe Lexapro?) I will see her tomorrow. I take 1000mg Keppra 2 x per day for spasms and pain, and it works better than anything else I ever tried. Marcie

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[Guest guest]

Hi Ric,

That is very typical that doctors have not heard of LDN. It is simply not a main-stream medicine as of yet. I will send you some info privately. But for now, they are trying to put together testing for LDN and AIDS in Mali (Africa).

It is definitely worth trying LDN. Although it is a different ailment, LDN has done wonders for my husbands MS. It is all about the immune system.

Aletha

[low dose naltrexone] Re: ldn and incompatible meds

>> Hello LDN Advocates, > > I've been fortunate enough to have started ldn tx for MS dx in June 05. Began ldn tx on 10/29 (homemade) - 1/2 tab crushed in 25ml H2O 3ml in juice @ 11:pm nightly. > > By Monday 10/31 it seemed like I could think more clearly, and B & B "normal" for first time in months! Same on each subsequent day. The down side however, waves of extreme fatigue intermittently throughout the day with pain and increased stiffness, can't keep my eyes open during the peak fatigue times.> > I thought I'd eliminated any contraindicated meds, and did not find those which I must take on the incompatible list, but it is possible I've overlooked something, "foggybrain" and all. I'll list all meds and would very much appreciate it if someone can let me know if I am doing something wrong or if what I am experiencing is expected, and will hopefully, resolve with time.> > Meds: Norvasc 10mg qam, Bumetanide 1mg qam, Tramadol 50mg bid, Provigil 400mg qam/ & 200mg PRN., > and numerous vit and min supplements. Also regular aspirin or arthritis formula powders for degen. disc. and joint - osteo arthritis. Was using Spiriva for COPD, but stopped before starting ldn, that's been a struggle. I completely believe in ldn so the fault must be in one or more of the above.....Your guidance is needed and appreciated. Thank you. > > Georgina> ==========In many people taking LDN they have found it to act as a mild diuretic so you may need to adjust your other diuretic. Your extra fatigue could be due to that and maybe not. If possible try coming off as many of your meds as you can. I understand your BP meds are vital. You might want to try later down the road going without the Tramadol and Provigil and see how you feel. See below.

For those of you in the first 3 months of LDN therapy Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains why the temporary increase in MS symptoms.When starting this LDN(Low Dose Naltrexone) therapy in the treatment of MS, there may also be some initial transient, though temporary, increase in MS symptoms. Experience in using this method has demonstrated most commonly, such as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams, tiredness, fatigue, spasm and pain. These increased symptoms would not normally be expected to last more than seven to ten days.Rarely, other transient symptoms have included more severe pain and spasm, headache, diarrhea or vomiting. These additional symptoms would appear to be associated with the previous frequent use of strong analgesics, which effectively create an addiction and dependency, thus increasing the body's sensitivity to pain. This temporary increase in symptoms may also perhaps be explained when we consider the manner in which this drug is expected to work.In addition, because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit a full list of the drugs you are presently taking so that their compatibility may be assessed. In addition, because LDN will also block the analgesic effects of any opiate drugs (includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently being taken, the use of LDN will initially greatly increase the level of pain experienced. It is therefore advisable that any opiate-like drugs be discontinued at least two weeks before this treatment is initiated. When starting the treatment it is essential that any untoward or adverse side-effects are reported immediately so that the treatment process can be further assessed and, if necessary, modified. Initially, MS occurs due to a reduction in the activity of the controlling influence of the suppressor T-cells within the immune system. During an acute relapse, the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4) T-cells tend to predominate. This is the situation most pronounced during an acute relapse but occurs similarly, but to a lesser extent, in chronic progressive MS. Under the influence of LDN there will be an expected increase in the overall numbers of T-cells but, because the CD-4, helper T-cells tend to predominate at this time, an increase in their numbers will expectedly tend to increase MS symptoms. It is only when the numbers of suppressor T-cells effectively & quot;catch up & quot; that the normal balance is restored and symptoms once again diminish and improve. Dr. M R LawrencePosted by

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[Guest guest]

In a message dated 11/5/2005 9:50:55 PM Central Standard Time, georgina374@... writes:

I'll look into the Keppra, but I've never tried another Narcolepsy med that worked for me as well as Provigil. Not only did I trial it but it has never adversely effected me, it has however, been blocked by most pain meds, and therefore loses it's effectiveness. Maybe the combination of meds with ldn is causing this?

=============================================================

Georgina,

I was wrong. My cousin still takes Provigil.

Do check into the Keppra. It is the only thing to have touched my spasms. Google MS and Keppra. Dr Katheline Hawker did the study and had good results. It was made public two years ago. It is an anti-epileptic drug.

Marcie

[Guest guest]

Hi Marcie,

I'm glad you mentioned anti-epileptic. I'll look it up to see how it compares with another such med which had been Rx'd but was incompatible.

I appreciate your help, thanks Marcie.

Georgina

marciemjm@... wrote:

In a message dated 11/5/2005 9:50:55 PM Central Standard Time, georgina374@... writes:

I'll look into the Keppra, but I've never tried another Narcolepsy med that worked for me as well as Provigil. Not only did I trial it but it has never adversely effected me, it has however, been blocked by most pain meds, and therefore loses it's effectiveness. Maybe the combination of meds with ldn is causing this? ============================================================= Georgina, I was wrong. My cousin still takes Provigil. Do check into the Keppra. It is the only thing to have touched my spasms. Google MS and Keppra. Dr Katheline Hawker did the study and had good results. It was made public two years ago. It is an anti-epileptic drug.

Marcie

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[Guest guest]

In a message dated 11/6/2005 3:49:17 PM Eastern Standard Time, pomsaregreat@... writes:

If you consider narcolepsy to be an autoimmune disease then it's not uncommon to suffer

Hi

Does anyone know if narcolepsy is an autoimmune disease. My brother has it and has had it since he was about 13. He's 63 now.

Arlene

[Guest guest]

Hi ,

It's been a lifesaver, literally. Having trialed it I'm keenly aware of how it has helped me, not just with Narcolepsy but as pain relief, for a long time, allowing me to work as long as I did. When falls became frequent nothing helped those; looking up at the patients no longer made me safe for them since I never know when I'm going to fall.

Unless it too turns on me I plan to continue using Provigil!

Georgina

Bren <TwisterAlley2@...> wrote:

GeorginaI didn't realize you are on Provigil for Narcolepsy, I thought you were using it for MS fatigue. Continue to stay on the Provigil.

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[Guest guest]

Hi ,

You can look at Provigil.com or it's Mfgr.- Cephalon, Inc., it will list all the possibilities. Although I've never understood why they had to list it as a Sched. drug, it isn't habit forming!? Somehow it fell under the "performance enhancer" category. Not for me, it keeps me alert and from falling asleep mid-sentence!

Fascinating little disorder, Narcolepsy! I have the better part of a book written, but now need to find others with both MS and Narcolepsy, especially since both need more public exposure.

No, I don't plan to cut back or eliminate the Provigil, unless there is a proven interference with ldn. It had been a suggestion to me because I've become so terribly fatigued since starting ldn. I think the Tramadol was the culprit though, I'm a bit better in the fatigue department today. I took 1/2 of the Tram. tab this morning. It helped some and so far I have not had that awful wave of exhaustion.

I can only speak for myself regarding those meds which blocked the effectiveness of Provigil, they include nearly all pain meds, including Tylenol. Tramadol has been the only exception, Baclofen - sort of - I stopped taking it because of increased edema which resolved several days after stopping.

These days I pay alot of attention to the package inserts and watch for sxs. I should have been as careful with my meds as with those of others.

Thanks, take care.

Georgina

<pomsaregreat@...> wrote: Hi Georgina, I take provigil for my ms and it helps me to function. I would be lost without it. I am very interested in the what meds. block provigil? Is it documented anywhere or did you notice this happening when you went on certain meds? I would be leary of stopping the provigil when used for narcolepsy. Just be careful okay! As for the link with narcolepsy and ms. If you consider narcolepsy to be an autoimmune disease then it's not uncommon to suffer from more than one. It seems most people I talk to that have one will generally suffer from another. I have ms, hidradenitis suppurativa and am a cancer survivor.Good luck with the ldn!--- >> Thanks . I tried to eliminate the tramadol last night, the pain awoke me several times, tried

to do without it most of today but gave in about 3pm, pain and spasms were too much. It does not eliminate just alleviate, it helps enough to allow me to be somewhat useful. I'll try to cut down at first, see how little Tramadol can be taken instead of just stopping abruptly, should have done that first. > > I'm afraid of eliminating the Provigil, I'm severely narcoleptic, also wonder if there is a link. Which actually came first the N or MS. Narcolepsy dx 10 years ago, but sxs most of my life; MS sx 30+ years, dx in 6/05. Read about a few others who have both, wonder how many others there are. > > Provigil keeps me alert but has been blocked by certain pain meds, thus the Tramadol. It is the only pain med which has not interfered with effectiveness of Provigil. Catch 22 it seems. Trial and error time depending on the individual or is there a hard

and fast rule? Did not think these meds were in those Dr. Lawrence listed, or did I miss something? Thanks again. > > Georgina>

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