Re: Disappointed--what next?

May 31, 2006

Hi Suzanne,

I would definitely give Skips or Irmat a try. Of course this means finding

a doctor to prescribe. Crystal has a list of doctors that prescribe, that

she is working on.

Aletha

[low dose naltrexone] Disappointed--what next?

> I'm casting a net of inquiry hoping that someone can advise me. I began

> LDN last

> Thanksgiving. Unfortunately, it has had no effect on my MS as far as I can

> tell. I have been

> taking 4.5 mg from a water mixture made from Revia purchased online from

> Medsmex. I

> have secondary progressive MS.

>

> So what is the consensus? Do I give up on LDN? Change dosage? Change

> vendor? I'm at a bit

> of a loss now.

>

> Any advice would be greatly appreciated.

>

> Peace,

> Suzanne

>

May 31, 2006

Change of dose can have an effect for some. Dosage and effect seem to

be personalized much like MS.

suZanne wrote:

>I'm casting a net of inquiry hoping that someone can advise me. I began LDN

last

>Thanksgiving. Unfortunately, it has had no effect on my MS as far as I can

tell. I have been

>taking 4.5 mg from a water mixture made from Revia purchased online from

Medsmex. I

>have secondary progressive MS.

>

>So what is the consensus? Do I give up on LDN? Change dosage? Change vendor?

I'm at a bit

>of a loss now.

>

>Any advice would be greatly appreciated.

>

>Peace,

>Suzanne

>

May 31, 2006

Hi Suzanne! I also have progressive MS and haven't notice any improvements

since starting LDN last August. But I'm trying to be realistic about this. I

don't expect LDN to reverse my situation, but I desperately hope that it

helps slow-down this disorder by halting further deterioration. If you are

mixing from a box of Revia bought last November, you should have plenty to

last you through several more months, so what do you have to lose by giving

it more time--till at least your Revia is gone? I encourage you not to

despair or give-up. Someone (Bren?) said once when I started that it can

take 8 months or more till some folks notice improvements -- so " HANG IN

THERE! " is my advice.

Best regards, Rae

[low dose naltrexone] Disappointed--what next?

I'm casting a net of inquiry hoping that someone can advise me. I began LDN

last Thanksgiving. Unfortunately, it has had no effect on my MS as far as I

can tell. I have been taking 4.5 mg from a water mixture made from Revia

purchased online from Medsmex. I have secondary progressive MS.

So what is the consensus? Do I give up on LDN? Change dosage? Change vendor?

I'm at a bit of a loss now.

Any advice would be greatly appreciated.

Peace,

Suzanne

May 31, 2006

Hi Aletha, Thanks, I emailed her to find out what area she is in so I can look on my list to help her find a Dr that prescribes in her area. Also if anyone can send me their Dr's info so I can add it to my list so we can help more people it would be greatly appreciated more then you know because the people that can't get their own Dr's to prescribe the LDN to them then we need to help them find one that will. I have one list for the States and one for other Countries..... Always Your Friend, Crystal Aletha

Wittmann <Aletha@...> wrote: Hi Suzanne,I would definitely give Skips or Irmat a try. Of course this means finding a doctor to prescribe. Crystal has a list of doctors that prescribe, that she is working on.Aletha [low dose naltrexone] Disappointed--what next?> I'm casting a net of inquiry hoping that someone can advise me. I began > LDN last> Thanksgiving. Unfortunately, it has had no effect on my MS as far as I can > tell. I have been> taking 4.5 mg from a water mixture made from Revia purchased online from > Medsmex. I> have secondary progressive

MS.>> So what is the consensus? Do I give up on LDN? Change dosage? Change > vendor? I'm at a bit> of a loss now.>> Any advice would be greatly appreciated.>> Peace,> Suzanne>>>>>>>>>

May 31, 2006

Crystal, Just a bit of advice: Be sure that each doctor gives his/her permissionm to be placed on a list. Some don't want their names given out. MarcieCrystal <crystalangel6771@...> wrote: Hi Aletha, Thanks, I emailed her to find out what area she is in so I can look on my list to help her find a Dr that prescribes in her area. Also if anyone can send me their Dr's info so I can add it to my list so we can help more people it would be greatly appreciated more then you

know because the people that can't get their own Dr's to prescribe the LDN to them then we need to help them find one that will. I have one list for the States and one for other Countries..... Always Your Friend, Crystal Aletha Wittmann <Aletha@...> wrote: Hi Suzanne,I would definitely give Skips or Irmat a try. Of course this means finding a doctor to prescribe. Crystal has a list of doctors that prescribe, that she is working on.Aletha

[low dose naltrexone] Disappointed--what next?> I'm casting a net of inquiry hoping that someone can advise me. I began > LDN last> Thanksgiving. Unfortunately, it has had no effect on my MS as far as I can > tell. I have been> taking 4.5 mg from a water mixture made from Revia purchased online from > Medsmex. I> have secondary progressive MS.>> So what is the consensus? Do I give up on LDN? Change dosage? Change > vendor? I'm at a bit> of a loss now.>> Any advice would be greatly appreciated.>> Peace,> Suzanne>>>>>>>>>

May 31, 2006

Hi Marcie, Thanks but I know the routine.... Always A Friend, Crystal Marcie <marcie_martin@...> wrote: Crystal, Just a bit of advice: Be sure that each doctor gives his/her permissionm to be placed on a list. Some don't want their names given out. MarcieCrystal <crystalangel6771@...> wrote: Hi Aletha, Thanks, I emailed her to find out what area she is in so I can look on my list to help her find a Dr that prescribes in her area. Also if anyone can send me their Dr's info so I can add it to my list so we can help more people it would be greatly appreciated more then you know because the people that can't get their own Dr's to prescribe the LDN to them then we need to help them find one that will. I have one list for the States and one for other Countries..... Always Your Friend, Crystal Aletha Wittmann <Aletha@...> wrote: Hi Suzanne,I would definitely give Skips or Irmat a try. Of course this means finding a doctor to prescribe. Crystal has a list of doctors that prescribe, that she is working on.Aletha [low dose naltrexone] Disappointed--what next?> I'm casting a net of inquiry hoping that someone can advise me. I began > LDN last> Thanksgiving. Unfortunately, it has had no effect on my MS as far as I can > tell. I have been> taking 4.5 mg from a water mixture made from Revia purchased online from >

Medsmex. I> have secondary progressive MS.>> So what is the consensus? Do I give up on LDN? Change dosage? Change > vendor? I'm at a bit> of a loss now.>> Any advice would be greatly appreciated.>> Peace,> Suzanne>>>>>>>>>

May 31, 2006

I would change the Vendor a go through a Dr. to get a script from a

reputable compounding Pharmacy.

All The Best,

....

helpful support groups for people with MS

LDN_Users & www.ldnusers.org

low dose naltrexone

mscured

TheChronicIllnessCafe

On May 31, 2006, at 12:07 PM, suZanne wrote:

> I'm casting a net of inquiry hoping that someone can advise me. I

> began LDN last

> Thanksgiving. Unfortunately, it has had no effect on my MS as far

> as I can tell. I have been

> taking 4.5 mg from a water mixture made from Revia purchased online

> from Medsmex. I

> have secondary progressive MS.

>

> So what is the consensus? Do I give up on LDN? Change dosage?

> Change vendor? I'm at a bit

> of a loss now.

>

> Any advice would be greatly appreciated.

>

> Peace,

> Suzanne

>

May 31, 2006

Suzanne

If you have used distilled or deionised water, done the maths right to get the correct dose and kept the mixture in the fridge then your problem is unlikely to be the source. I have followed this issue of why LDN does not work for a few and would say that the only reason found is miss diagnosis of Lymes Disease but I am not suggesting a reason has been found on every occasion. Most people ultimately diagnosed with Lyme were originally diagnosed with MS and as far as I can see LDN does not work effectively for Lyme. The best book I have found to give you information about diagnostic tests and treatments that work with Lyme is www.lymebook.com

A similar message to yours on another board met with a reply that Candida could stop LDN working and I have put the link provided below

http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=1129136093

You could try a lower dose but unless 4.5 has given you adverse effects, I would not think that would help. Never the less I would give 3 Mg a go before giving up, what have you to loose.

The only other question to ask is what do you call failure i.e. has you condition worsened since starting LDN. The large percentage success with LDN is stopping progress, improvements are a bonus for a lesser number. If you have not progressed since starting LDN then maybe you have not failed at all. Officialdom rubbished LDN because it is loosing licensed drug sales, but I think the benefits are sometimes overstated by supporters.

Hope the above gives you some ideas.

Dave

Message: 25 Date: Wed May 31, 2006 9:11 am (PDT) From: "suZanne" zangaroo@... Subject: Disappointed--what next? I'm casting a net of inquiry hoping that someone can advise me. I began LDN last Thanksgiving. Unfortunately, it has had no effect on my MS as far as I can tell. I have been taking 4.5 mg from a water mixture made from Revia purchased online from Medsmex. I have secondary progressive MS.So what is the consensus? Do I give up on LDN? Change dosage? Change vendor? I'm at a bit of a loss now.Any advice would be greatly appreciated.Peace,Suzanne

May 31, 2006

Crystal, Not really sure what the 'routine' is, but my doctor somehow got put on the list when I confidentially gave his name to a woman who lived within a couple hundred miles of me, and she was unsure if she would find a doc in her city. He knew that I had researched the LDN issue, as I was how he first heard of it. Then the nuts who 'lurk' but never are heard of started to appear. Quite embarrasing. Now I am reminded why so many knowledgable people have left this site! MarcieCrystal <crystalangel6771@...> wrote: Hi Marcie, Thanks but I know the routine.... Always A Friend, Crystal Marcie <marcie_martin@...> wrote: Crystal, Just a bit of advice: Be sure that each doctor gives his/her permissionm to be placed on a list. Some don't want their names given out. MarcieCrystal <crystalangel6771@...> wrote: Hi Aletha, Thanks, I emailed

her to find out what area she is in so I can look on my list to help her find a Dr that prescribes in her area. Also if anyone can send me their Dr's info so I can add it to my list so we can help more people it would be greatly appreciated more then you know because the people that can't get their own Dr's to prescribe the LDN to them then we need to help them find one that will. I have one list for the States and one for other Countries..... Always Your Friend, Crystal Aletha Wittmann <Aletha@...> wrote: Hi

Suzanne,I would definitely give Skips or Irmat a try. Of course this means finding a doctor to prescribe. Crystal has a list of doctors that prescribe, that she is working on.Aletha [low dose naltrexone] Disappointed--what next?> I'm casting a net of inquiry hoping that someone can advise me. I began > LDN last> Thanksgiving. Unfortunately, it has had no effect on my MS as far as I can > tell. I have been> taking 4.5 mg from a water mixture made from Revia purchased online from > Medsmex. I> have secondary progressive MS.>> So what is the consensus? Do I give up on LDN? Change dosage? Change > vendor? I'm at a bit> of a loss now.>> Any advice would be

greatly appreciated.>> Peace,> Suzanne>>>>>>>>>

June 1, 2006

Don't give up. Play with your dose and remember halting the progression is

different for everyone. I would give it a year minimal. It may be slowing

your progression and you just don't know it. Are you having additional

symptoms? Best, Kathy

Re: [low dose naltrexone] Disappointed--what next?

> Change of dose can have an effect for some. Dosage and effect seem to

> be personalized much like MS.

>

> suZanne wrote:

>

>>I'm casting a net of inquiry hoping that someone can advise me. I began

>>LDN last

>>Thanksgiving. Unfortunately, it has had no effect on my MS as far as I can

>>tell. I have been

>>taking 4.5 mg from a water mixture made from Revia purchased online from

>>Medsmex. I

>>have secondary progressive MS.

>>

>>So what is the consensus? Do I give up on LDN? Change dosage? Change

>>vendor? I'm at a bit

>>of a loss now.

>>

>>Any advice would be greatly appreciated.

>>

>>Peace,

>>Suzanne

>>

June 1, 2006

Suzanne,

Don't quit the LDN. Maybe it would be best to get it from Irmat's in NYC or

Skip's in Boca Raton,

Fl.

Regards,

Tom

[low dose naltrexone] Disappointed--what next?

> I'm casting a net of inquiry hoping that someone can advise me. I began

> LDN last

> Thanksgiving. Unfortunately, it has had no effect on my MS as far as I can

> tell. I have been

> taking 4.5 mg from a water mixture made from Revia purchased online from

> Medsmex. I

> have secondary progressive MS.

>

> So what is the consensus? Do I give up on LDN? Change dosage? Change

> vendor? I'm at a bit

> of a loss now.

>

> Any advice would be greatly appreciated.

>

> Peace,

> Suzanne

>

June 1, 2006

i would get it compounded. I understand there are alot of people who use this

method but honestly as a nurse I would never recommend anyone to do this--

cyndi

Re: [low dose naltrexone] Disappointed--what next?

>

>Suzanne,

>Don't quit the LDN. Maybe it would be best to get it from Irmat's in NYC or

>Skip's in Boca Raton,

>Fl.

>Regards,

>Tom

>

> [low dose naltrexone] Disappointed--what next?

>

>> I'm casting a net of inquiry hoping that someone can advise me. I began

>> LDN last

>> Thanksgiving. Unfortunately, it has had no effect on my MS as far as I can

>> tell. I have been

>> taking 4.5 mg from a water mixture made from Revia purchased online from

>> Medsmex. I

>> have secondary progressive MS.

>>

>> So what is the consensus? Do I give up on LDN? Change dosage? Change

>> vendor? I'm at a bit

>> of a loss now.

>>

>> Any advice would be greatly appreciated.

>>

>> Peace,

>> Suzanne

>>

June 1, 2006

I get my LDN from The Compounder which is on the recommended list. I have not had any bad side effects as of yet. It has been 5 months now. I tried taking LDN last year in Nov. 4.5 mg and then 3.0 mg from another pharmacy but got extremely bad headaches, poor balance and terrible stiffness and joint pain so I stopped asap. I found a list of recommened pharmanies on the low dose naltrexone web site and tried them. No side effects like before, waiting to see what happens. I'm not jogging but I not experiening the side effects. psychrn@... wrote: i would get it compounded. I understand there are alot of people who use this method but honestly as a nurse I would never recommend anyone to do this-- cyndi cyndi Re: [low dose naltrexone] Disappointed--what next?>>Suzanne,>Don't quit the LDN. Maybe it would be best to get it from Irmat's in NYC or >Skip's in Boca Raton,>Fl.>Regards,>Tom>> [low dose naltrexone] Disappointed--what next?>>>> I'm casting a net of inquiry hoping that someone can advise me. I began >> LDN last>> Thanksgiving. Unfortunately, it has had no effect on my MS as far as I can >> tell. I have been>> taking 4.5 mg from a water mixture made from Revia purchased online from >> Medsmex. I>> have

secondary progressive MS.>>>> So what is the consensus? Do I give up on LDN? Change dosage? Change >> vendor? I'm at a bit>> of a loss now.>>>> Any advice would be greatly appreciated.>>>> Peace,>> Suzanne>>>>>>>>>>>>>>>>>>

June 5, 2006

cyndi,

what's wrong with diluting the pill in distilled water and keeping

it in the fridge for 2 weeks or less ? is there an issue of

efficiency ? or is it simply not convenient, and may get

contaminated ?

>

> i would get it compounded. I understand there are alot of people

who use this method but honestly as a nurse I would never recommend

anyone to do this--

> cyndi

>

> Re: [low dose naltrexone] Disappointed--what next?

> >

> >Suzanne,

> >Don't quit the LDN. Maybe it would be best to get it from

Irmat's in NYC or

> >Skip's in Boca Raton,

> >Fl.

> >Regards,

> >Tom

> >

> > [low dose naltrexone] Disappointed--what next?

> >

> >> I'm casting a net of inquiry hoping that someone can advise me.

I began

> >> LDN last

> >> Thanksgiving. Unfortunately, it has had no effect on my MS as

far as I can

> >> tell. I have been

> >> taking 4.5 mg from a water mixture made from Revia purchased

online from

> >> Medsmex. I

> >> have secondary progressive MS.

> >>

> >> So what is the consensus? Do I give up on LDN? Change dosage?

Change

> >> vendor? I'm at a bit

> >> of a loss now.

> >>

> >> Any advice would be greatly appreciated.

> >>

> >> Peace,

> >> Suzanne

> >>

June 5, 2006

its not stable nor is it accurate.

cyndi

On Jun 4, 2006, at 10:52 PM, Eli wrote:

> cyndi,

> what's wrong with diluting the pill in distilled water and keeping

> it in the fridge for 2 weeks or less ? is there an issue of

> efficiency ? or is it simply not convenient, and may get

> contaminated ?

>

> >

> > i would get it compounded. I understand there are alot of people

> who use this method but honestly as a nurse I would never recommend

> anyone to do this--

> > cyndi

June 5, 2006

What exactly do you mean by 'not stable'? Pls explain what you mean...

Rae

Re: [low dose naltrexone] Re: Disappointed--what next?

its not stable nor is it accurate.

cyndi

On Jun 4, 2006, at 10:52 PM, Eli wrote:

> cyndi,

> what's wrong with diluting the pill in distilled water and keeping it

> in the fridge for 2 weeks or less ? is there an issue of efficiency ?

> or is it simply not convenient, and may get contaminated ?

>

> >

> > i would get it compounded. I understand there are alot of people

> who use this method but honestly as a nurse I would never recommend

> anyone to do this--

> > cyndi

June 5, 2006

Rae, Ditto, I want to know too. Although I get my script filled at Skip's and prefer to take the capsules, I know a man who has been getting the Revia tablets from Mexico, mixing with water, and having good results. MarcieRae & Doug Bower <radbower@...> wrote: What exactly do you mean by 'not stable'? Pls explain what you mean...Rae -----Original Message-----From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Cyndi LenzSent: Monday, June 05, 2006 6:22 AMlow dose naltrexone Subject: Re: [low dose naltrexone] Re: Disappointed--what next?its not stable nor is it accurate.cyndiOn Jun 4, 2006, at 10:52 PM, Eli wrote:> cyndi,> what's

wrong with diluting the pill in distilled water and keeping it > in the fridge for 2 weeks or less ? is there an issue of efficiency ? > or is it simply not convenient, and may get contaminated ?>> > >> > i would get it compounded. I understand there are alot of people> who use this method but honestly as a nurse I would never recommend > anyone to do this--> > cyndi> > cyndi

June 5, 2006

I have been doing pills dissolved in a

bottle for a year now with no complaints. What is the issue?

Bruce Guilmette, PhD

Survive Cancer Foundation, Inc.

http://survivecancerfoundation.org

Do not worry about tomorrow, for tomorrow

will worry about itself. Each day has enough trouble of its own. Matt

6:34 (NIV)

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Marcie