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Andy:

You seem to be saying in one sentence NOT to buy spectrum brand, then saying

in the next sentence that spectrum brand is good. Could you clarify?

Thanks,

Dean

_____

From: [mailto: ]

On Behalf Of andrewhallcutler

Sent: Thursday, July 02, 2009 12:50 PM

Subject: [ ] Re: Question

>

Flax oil, some fish oils, canola oil you can buy in the store. Walnut oil

(NOT spectrum brand) or walnuts. I'd suggest some relatively good, packaged

under nitrogen brand like Spectrum.

Andy

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Well I guess its it could be just the fatty acids making her crazy

because she reacts terribly to flaxseed oil too. Something in these

oild are making her really focused but VERY impulsive. Perhaps I

should try the Vit. A by itself, since I believe it helps brain

function.

On Jul 2, 2009, at 12:49 PM, andrewhallcutler wrote:

>

>

>

> >

> > probably a silly question but is there an essential fatty acid

> that has no vitaminins in it? like the A, D and E...

> >

> > I am wanting to try everything seperately because cod liver oil,

> flaxseed oil and shark oil all make her really focused, but she

> gets impulsive with it.

> >

> Flax oil, some fish oils, canola oil you can buy in the store.

> Walnut oil (NOT spectrum brand) or walnuts. I'd suggest some

> relatively good, packaged under nitrogen brand like Spectrum.

>

> Andy

>

> <a href= " http://www.noamalgam.com/index.html " >Amalgam Illness:

> Diagnosis and Treatment</a >

>

> <a href= " http://www.noamalgam.com/hairtestbook.html " >Hair Test

> Interpretation: Finding Hidden Toxicities</a >

>

> <a href= " http://www.noamalgam.com/nourishinghope.html " >Nourishing

> Hope for Autism: Nutrition Intervention for Healing Our Children</a >

>

> <a href= " http://www.noamalgam.com/

> biologicaltreatments.html " >Biological Treatments for Autism and

> PDD</a >

>

>

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Guest guest

>

> Andy:

>

>

>

> You seem to be saying in one sentence NOT to buy spectrum brand, then saying

> in the next sentence that spectrum brand is good. Could you clarify?

I was saying that the walnut oil is not preferred but everything else they make

is great.

>

>

>

> Thanks,

>

> Dean

>

Andy

<a href= " http://www.noamalgam.com/index.html " >Amalgam Illness: Diagnosis and

Treatment</a >

<a href= " http://www.noamalgam.com/hairtestbook.html " >Hair Test Interpretation:

Finding Hidden Toxicities</a >

<a href= " http://www.noamalgam.com/nourishinghope.html " >Nourishing Hope for

Autism: Nutrition Intervention for Healing Our Children</a >

<a href= " http://www.noamalgam.com/biologicaltreatments.html " >Biological

Treatments for Autism and PDD</a >

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Guest guest

Why no walnut oil?

> >

> > Andy:

> >

> >

> >

> > You seem to be saying in one sentence NOT to buy spectrum brand, then saying

> > in the next sentence that spectrum brand is good. Could you clarify?

>

> I was saying that the walnut oil is not preferred but everything else they

make is great.

> >

> >

> >

> > Thanks,

> >

> > Dean

> >

> Andy

>

> <a href= " http://www.noamalgam.com/index.html " >Amalgam Illness: Diagnosis and

Treatment</a >

>

> <a href= " http://www.noamalgam.com/hairtestbook.html " >Hair Test Interpretation:

Finding Hidden Toxicities</a >

>

> <a href= " http://www.noamalgam.com/nourishinghope.html " >Nourishing Hope for

Autism: Nutrition Intervention for Healing Our Children</a >

>

> <a href= " http://www.noamalgam.com/biologicaltreatments.html " >Biological

Treatments for Autism and PDD</a >

>

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Guest guest

> Why no walnut oil?

The Spectrum brand of walnut oil may be stabilized by selectively removing some

of the omega 3 - I called and talked to them about some suggestive language on

their website and got an evasive answer about that.

Andy

<a href= " http://www.noamalgam.com/index.html " >Amalgam Illness: Diagnosis and

Treatment</a >

<a href= " http://www.noamalgam.com/hairtestbook.html " >Hair Test Interpretation:

Finding Hidden Toxicities</a >

<a href= " http://www.noamalgam.com/nourishinghope.html " >Nourishing Hope for

Autism: Nutrition Intervention for Healing Our Children</a >

<a href= " http://www.noamalgam.com/biologicaltreatments.html " >Biological

Treatments for Autism and PDD</a >

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Doesn't Spectrum also do some funny business with its " High heat canola

oil? " I mean, how do you take a fragile oil that is not supposed to be

exposed to heat and turn it into a frying oil with a super-high smoke point?

In fact, almost all their cooking oils are " refined. " Doesn't that involve

monkeying with their chemical makeup?

Thanks,

Dean

_____

From: [mailto: ]

On Behalf Of andrewhallcutler

Sent: Friday, July 03, 2009 2:55 AM

Subject: [ ] Re: Question

> Why no walnut oil?

The Spectrum brand of walnut oil may be stabilized by selectively removing

some of the omega 3 - I called and talked to them about some suggestive

language on their website and got an evasive answer about that.

Andy

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have you tried neptune krill oil? i've wanted to try that myself for me and my

child.

>

> probably a silly question but is there an essential fatty acid that has no

vitaminins in it? like the A, D and E...

>

> I am wanting to try everything seperately because cod liver oil, flaxseed oil

and shark oil all make her really focused, but she gets impulsive with it.

>

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Guest guest

you can try to contact crystal she keeps a list of prescribing doctor.

email: angelindisguise67@... or CrystalAngel6267@...

if you do not succeed,you can contact me in few months.we are busy with a doctor

in the netherlands to prescribe ldn.

>

> Hello everyone, I'm new to the group and forgive me if this question has

already been asked and answered a zillion times maybe?

> Went to my doc today, she's super, but wouldn't prescribe me the low dose LDN

even though I brought her all the research etc, said was indicated for

Alcoholics or the like but not for a Lupus sufferer.

> I begged her to read the material and hope she will and will in the meantime

try my luck with my Rheumatologist, but is there any other way to get it, ie

order ot from Canada or the like, or would that not be legal?

> Any suggestions welcome, I'm from Germany and don't really know why dotors are

so closed to new discoveries, over there, it's the same, you'd think they'd be

as excited as I was when a friend with Hashimoto's pointed LDN out to me, she

was so very helpful and said it really worked for her, so I'm quite keen, too.

> Thanks for any hints...

> warm cheers from your

> Maren

>

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Hi Maureen,

It is a challenge for us yes. My partner’s neuro has

told us LDN is a no brainer but won’t put his hands up to taking

responsibility as it is not FDA approved. The other weekend we ended up

in A & E as he had a bladder/urine infection and the Dr on duty asked what he

was on. We told him LDN, he looked it up ie Naltrexone and said for him

to get off it, it’s an awful drug and he wouldn’t support it etc.

We explained it’s in LOW DOSES but that wouldn’t change his

mind.

What we did find out is that his T-cell count was above average

and this is good news and the only thing he is taking now is LDN. Crystal

may have a link re Drs in Germany prescribing LDN but over here in the UK/Europe

it is still relatively unknown and shouldn’t be.

Dr Lawrence may be able to help, I don’t know if this is

available for all to see on ’s LDN Database www.ldndatabase.com , if not, please

email me off line.

Many thanks,

Jayne

Please sign the petition to the UK Govt to fund trials for LDN

http://www.ldnnow.com/

From: low dose naltrexone

[mailto:low dose naltrexone ] On Behalf Of Maren

Springsteen

Sent: 08 July 2009 06:29

low dose naltrexone

Subject: [low dose naltrexone] Question

Hello everyone, I'm new to the group and

forgive me if this question has already been asked and answered a zillion times

maybe?

Went to my doc today, she's super, but wouldn't prescribe me the low dose LDN

even though I brought her all the research etc, said was indicated for

Alcoholics or the like but not for a Lupus sufferer.

I begged her to read the material and hope she will and will in the meantime

try my luck with my Rheumatologist, but is there any other way to get it, ie

order ot from Canada or the like, or would that not be legal?

Any suggestions welcome, I'm from Germany and don't really know why dotors are

so closed to new discoveries, over there, it's the same, you'd think they'd be

as excited as I was when a friend with Hashimoto's pointed LDN out to me, she

was so very helpful and said it really worked for her, so I'm quite keen, too.

Thanks for any hints...

warm cheers from your

Maren

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Maren, tell your Dr that I live in Scotland, my GP prescribes LDN, and that I am in remission from both cancer and lupus. Why don't you give him the book by Cris Kerr to read, and the one by Elaine , the latter I wish to buy for myself! I also bought half a dozen of 's book and gave them to my GP, Onco etc.............

Best of luck

Celia

PS ........and yes you can buy High dose off the net and mix it to low dose yourself, try River Pharmacy or Allday Chemist. There is a firm in the UK but they do not sell to the EU.................

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Try here.http://www.antiaging-systems.com/iasstore/acatalog/naltrexone.htmla.--- On Wed, 7/8/09, zahavi <zahavi100@...> wrote:From: zahavi <zahavi100@...>Subject: [low dose naltrexone] Re: Questionlow dose naltrexone Date: Wednesday, July 8, 2009, 3:24 AM

you can try to contact crystal she keeps a list of prescribing doctor.

email: angelindisguise67 or CrystalAngel6267@ aol.com

if you do not succeed,you can contact me in few months.we are busy with a doctor in the netherlands to prescribe ldn.

>

> Hello everyone, I'm new to the group and forgive me if this question has already been asked and answered a zillion times maybe?

> Went to my doc today, she's super, but wouldn't prescribe me the low dose LDN even though I brought her all the research etc, said was indicated for Alcoholics or the like but not for a Lupus sufferer.

> I begged her to read the material and hope she will and will in the meantime try my luck with my Rheumatologist, but is there any other way to get it, ie order ot from Canada or the like, or would that not be legal?

> Any suggestions welcome, I'm from Germany and don't really know why dotors are so closed to new discoveries, over there, it's the same, you'd think they'd be as excited as I was when a friend with Hashimoto's pointed LDN out to me, she was so very helpful and said it really worked for her, so I'm quite keen, too.

> Thanks for any hints...

> warm cheers from your

> Maren

>

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Hi Jayne,

I strongly suspect the idiot mistakenly looked up Novantrone, an all

too common mistake we've heard of many times over the years on here.

Novantrone is a horrible drug and I can't see anyway any doctor could

place their hands on their heart and say that about naltrexone.

Cheers,

jaynelcrocker wrote:

Hi

Maureen,

It

is a challenge for us yes. My partner’s neuro has

told us LDN is a no brainer but won’t put his hands up to taking

responsibility as it is not FDA approved. The other weekend we ended

up

in A & E as he had a bladder/urine infection and the Dr on duty asked

what he

was on. We told him LDN, he looked it up ie Naltrexone and said for

him

to get off it, it’s an awful drug and he wouldn’t support it etc.

We explained it’s in LOW DOSES but that wouldn’t change his

mind.

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I do understand just how frustrating the

a@E experience must have been for you. IT is a complete rejection and

discounting of all your patient knowledge and experience.

When youi say he wouldn’t support

because it is not FDA approved do you mean that LDN id not approved as opposed

to Naltrexone 50, which is, surely?

Ive been off LDN now 4 nights as following

Dr Zagon interview I reckoned I must be storing it too long and that this has

caused a prolonged and severe flare(months ).

Im wondering if I ought to resume every

other night, even though the dose is only 2.5.

I may be able to get to Dr Gilhooley in Scotland later

in the month . Meanwhile any ideas?

Nuala

From:

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

Sent: 08 July 2009 13:23

'Maren Springsteen';

low dose naltrexone

Subject: RE: [low dose naltrexone]

Question

Hi Maureen,

It is a challenge for us yes. My partner’s neuro has

told us LDN is a no brainer but won’t put his hands up to taking

responsibility as it is not FDA approved. The other weekend we ended up

in A & E as he had a bladder/urine infection and the Dr on duty asked what he

was on. We told him LDN, he looked it up ie Naltrexone and said for him

to get off it, it’s an awful drug and he wouldn’t support it

etc. We explained it’s in LOW DOSES but that wouldn’t change

his mind.

What we did find out is that his T-cell count was above average

and this is good news and the only thing he is taking now is LDN. Crystal may have a link re Drs in Germany

prescribing LDN but over here in the UK/Europe it is still relatively unknown

and shouldn’t be.

Dr Lawrence may be able to help, I don’t know if this is

available for all to see on ’s LDN Database www.ldndatabase.com , if not, please

email me off line.

Many thanks,

Jayne

Please sign the petition to the UK

Govt to fund trials for LDN

http://www.ldnnow.com/

From: low dose naltrexone

[mailto:low dose naltrexone ] On Behalf Of Maren Springsteen

Sent: 08 July 2009 06:29

low dose naltrexone

Subject: [low dose naltrexone]

Question

Hello

everyone, I'm new to the group and forgive me if this question has already been

asked and answered a zillion times maybe?

Went to my doc today, she's super, but wouldn't prescribe me the low dose LDN

even though I brought her all the research etc, said was indicated for

Alcoholics or the like but not for a Lupus sufferer.

I begged her to read the material and hope she will and will in the meantime

try my luck with my Rheumatologist, but is there any other way to get it, ie

order ot from Canada or the like, or would that not be legal?

Any suggestions welcome, I'm from Germany and don't really know why dotors are

so closed to new discoveries, over there, it's the same, you'd think they'd be

as excited as I was when a friend with Hashimoto's pointed LDN out to me, she

was so very helpful and said it really worked for her, so I'm quite keen, too.

Thanks for any hints...

warm cheers from your

Maren

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Guest guest

you will have to experiment,no one can solve it for you.it depends very much on

the liver.is the liver ok.can you drink a glass of red wine.

>

> I do understand just how frustrating the a@E experience must have been for

> you. IT is a complete rejection and discounting of all your patient

> knowledge and experience.

>

> When youi say he wouldn't support because it is not FDA approved do you mean

> that LDN id not approved as opposed to Naltrexone 50, which is, surely?

>

> Ive been off LDN now 4 nights as following Dr Zagon interview I reckoned I

> must be storing it too long and that this has caused a prolonged and severe

> flare(months ).

>

> Im wondering if I ought to resume every other night, even though the dose is

> only 2.5.

>

> I may be able to get to Dr Gilhooley in Scotland later in the month .

> Meanwhile any ideas?

>

> Nuala

>

>

>

> _____

>

> From: low dose naltrexone

> [mailto:low dose naltrexone ] On Behalf Of jaynelcrocker

> Sent: 08 July 2009 13:23

> 'Maren Springsteen'; low dose naltrexone

> Subject: RE: [low dose naltrexone] Question

>

>

>

>

>

>

>

>

> Hi Maureen,

>

>

>

> It is a challenge for us yes. My partner's neuro has told us LDN is a no

> brainer but won't put his hands up to taking responsibility as it is not FDA

> approved. The other weekend we ended up in A & E as he had a bladder/urine

> infection and the Dr on duty asked what he was on. We told him LDN, he

> looked it up ie Naltrexone and said for him to get off it, it's an awful

> drug and he wouldn't support it etc. We explained it's in LOW DOSES but

> that wouldn't change his mind.

>

>

>

> What we did find out is that his T-cell count was above average and this is

> good news and the only thing he is taking now is LDN. Crystal may have a

> link re Drs in Germany prescribing LDN but over here in the UK/Europe it is

> still relatively unknown and shouldn't be.

>

>

>

> Dr Lawrence may be able to help, I don't know if this is available for all

> to see on 's LDN Database www.ldndatabase. <http://www.ldndatabase.com>

> com , if not, please email me off line.

>

>

>

> Many thanks,

>

>

>

> Jayne

>

> Please sign the petition to the UK Govt to fund trials for LDN

>

> http://www.ldnnow.com/

>

>

>

>

>

>

>

>

>

>

>

> From: low dose naltrexone

> [mailto:low dose naltrexone ] On Behalf Of Maren Springsteen

> Sent: 08 July 2009 06:29

> low dose naltrexone

> Subject: [low dose naltrexone] Question

>

>

>

>

>

>

>

>

>

> Hello everyone, I'm new to the group and forgive me if this question has

> already been asked and answered a zillion times maybe?

> Went to my doc today, she's super, but wouldn't prescribe me the low dose

> LDN even though I brought her all the research etc, said was indicated for

> Alcoholics or the like but not for a Lupus sufferer.

> I begged her to read the material and hope she will and will in the meantime

> try my luck with my Rheumatologist, but is there any other way to get it, ie

> order ot from Canada or the like, or would that not be legal?

> Any suggestions welcome, I'm from Germany and don't really know why dotors

> are so closed to new discoveries, over there, it's the same, you'd think

> they'd be as excited as I was when a friend with Hashimoto's pointed LDN out

> to me, she was so very helpful and said it really worked for her, so I'm

> quite keen, too.

> Thanks for any hints...

> warm cheers from your

> Maren

>

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Guest guest

Nuala,

This was some Dr in A & E, we spelt our Naltrexone for him (as

that appears in their little bible) as it is FDA approved and emphasized LOW

DOSE Naltrexone. This was a Dr at A & E and when he read up Naltrexone

didn’t like the sound of it. We couldn’t emphasize more it

was in LOW DOSES. However my partner’s neuro admits LDN is a no

brainer but says his hands are tied as it’s not gone through clinical

trials. The neuro wrote to my partner’s GP who then wrote to his

lawyers and was instructed not to prescribe it as it’s not FDA

approved. We rang our Local Health Board (equivalent to your Primary Care

Trust) and asked them to support this and mentioned the savings of LDN vs beta

interferon which is what he was taking ie £300/year vs

£12,000/year. The LHBs and PCTs are responsible for the budgeting

of hospitals/GPs etc in your area. We were told ‘sorry we only

support expensive drugs’.

It’s a long story but a lot of off label expensive drugs

gets prescribed for MS, so why not LDN? Because they’re afraid of

getting sued if something goes wrong. So we have now written to them and

said OK, if we take one of these off label expensive drugs which you are only

too happy to prescribe for people with MS and are not yet approved for MS and

something goes wrong, then we will be quite within our rights to sue you?

They promised to get back to us within 7 days. No response (3-4 weeks

ago). We are now going to the health ombudsman – and they know it.

Jayne

Please sign the petition to the UK Govt to fund trials for LDN

http://www.ldnnow.com/

From: low dose naltrexone

[mailto:low dose naltrexone ] On Behalf Of Nuala White

Sent: 09 July 2009 11:50

'jaynelcrocker'; 'Maren Springsteen';

low dose naltrexone

Subject: RE: [low dose naltrexone] Question

I do

understand just how frustrating the a@E experience must have been for you. IT

is a complete rejection and discounting of all your patient knowledge and

experience.

When youi

say he wouldn’t support because it is not FDA approved do you mean that

LDN id not approved as opposed to Naltrexone 50, which is, surely?

Ive been

off LDN now 4 nights as following Dr Zagon interview I reckoned I must be

storing it too long and that this has caused a prolonged and severe

flare(months ).

Im

wondering if I ought to resume every other night, even though the dose is only

2.5.

I may be

able to get to Dr Gilhooley in Scotland later in the month . Meanwhile any

ideas?

Nuala

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Guest guest

Hi Nuala,

I meant to add in my reply that I think Dr Zagon was referring

to ‘after a while with people taking LDN it can with some build up

and it no longer work’. This would imply that you have to be on it

for some time in order for it to no longer have the benefits one did have after

taking it for 3-6 months etc. I can’t remember when you first

started taking LDN but if you’re finding 2.5mg unbearable, perhaps do try

taking it alternative nights. However, initially I do believe you will go

through a bit of discomfort/pain whilst your immune system is regaining it’s

health to be able to function properly.

Many on here have been on it for years and are having great

success. Another alternative would be to lower to 2.0mg and continue

taking it nightly. I’m no expert myself, just a thought.

Jayne

Please sign the petition to the UK Govt to fund trials for LDN

http://www.ldnnow.com/

From: Nuala White

[mailto:nualawhite@...]

Sent: 09 July 2009 11:50

'jaynelcrocker'; 'Maren Springsteen';

low dose naltrexone

Subject: RE: [low dose naltrexone] Question

I do understand just how frustrating the a@E experience must have

been for you. IT is a complete rejection and discounting of all your patient

knowledge and experience.

When youi say he wouldn’t support because it is not FDA

approved do you mean that LDN id not approved as opposed to Naltrexone 50,

which is, surely?

Ive been off LDN now 4 nights as following Dr Zagon interview I

reckoned I must be storing it too long and that this has caused a prolonged and

severe flare(months ).

Im wondering if I ought to resume every other night, even though

the dose is only 2.5.

I may be able to get to Dr Gilhooley in Scotland later in the month

.. Meanwhile any ideas?

Nuala

From: low dose naltrexone

[mailto:low dose naltrexone ] On Behalf Of jaynelcrocker

Sent: 08 July 2009 13:23

'Maren Springsteen'; low dose naltrexone

Subject: RE: [low dose naltrexone] Question

Hi Maureen,

It is a challenge for us yes. My

partner’s neuro has told us LDN is a no brainer but won’t put his

hands up to taking responsibility as it is not FDA approved. The other

weekend we ended up in A & E as he had a bladder/urine infection and the Dr

on duty asked what he was on. We told him LDN, he looked it up ie

Naltrexone and said for him to get off it, it’s an awful drug and he

wouldn’t support it etc. We explained it’s in LOW DOSES but

that wouldn’t change his mind.

What we did find out is that his T-cell

count was above average and this is good news and the only thing he is taking

now is LDN. Crystal may have a link re Drs in Germany prescribing LDN but

over here in the UK/Europe it is still relatively unknown and shouldn’t

be.

Dr Lawrence may be able to help, I

don’t know if this is available for all to see on ’s LDN

Database www.ldndatabase.com , if not,

please email me off line.

Many thanks,

Jayne

Please sign

the petition to the UK Govt to fund trials for LDN

http://www.ldnnow.com/

From: low dose naltrexone [mailto:low dose naltrexone ]

On Behalf Of Maren Springsteen

Sent: 08 July 2009 06:29

low dose naltrexone

Subject: [low dose naltrexone] Question

Hello everyone, I'm new to the group and forgive me if this question has

already been asked and answered a zillion times maybe?

Went to my doc today, she's super, but wouldn't prescribe me the low dose LDN

even though I brought her all the research etc, said was indicated for

Alcoholics or the like but not for a Lupus sufferer.

I begged her to read the material and hope she will and will in the meantime

try my luck with my Rheumatologist, but is there any other way to get it, ie

order ot from Canada or the like, or would that not be legal?

Any suggestions welcome, I'm from Germany and don't really know why dotors are

so closed to new discoveries, over there, it's the same, you'd think they'd be

as excited as I was when a friend with Hashimoto's pointed LDN out to me, she

was so very helpful and said it really worked for her, so I'm quite keen, too.

Thanks for any hints...

warm cheers from your

Maren

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  • 1 month later...

First of all, let me state I am not a physician by any means. I was Dx'd with

RRMS in Feb of '08 and was prescribed Copaxone as my MS therapy before starting

LDN in Feb of '09.

I'm not sure what kind of " staying power " Avonex has in the body once its

discontinued, but I imagine you would be ok to start LDN after a week off

Avonex, though, you might want to go ahead and start immediately at the 1.5mg

dose after discontinuing Avonex. Stay on 1.5mg for a week or so before stepping

up to 3.0 and then finally 4.5, which is the recommended dose for MS unless you

suffer spasticity issues, then back it down to 3.0mg.

As far as your other meds....as long as they are not steroids, immuno

suppresants, interferons, or opiates based narcotics, you should be fine to take

them with very little risk.

You should do the research though...there is a comprehensive list of medications

out there to avoid if you are taking LDN. check the low dose naltrexone.org

website. It should be posted there.

Good luck and good health.

Kenc.

>

> Hi, New to group. I have MS and have been taking Avonex for the past year

since a T spine lesion showed up. I now have a cervical spine lesion that has

popped up since beginning Avonex. Since it's 30% chance of efficacy did me no

good, I really don't want to continue the shots. I see my neuro next week and

am planning to ask for naltrexone. My question is how long do you need to be

off other therapies before beginning naltrexone. I also take Celexa, Cymbalta,

Klonopin. Do I also need to taper down and stop these drugs as well? Just

trying to get all my ducks in a row before I see the neuro. Thanks.

>

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Just make sure you don`t call it Naltrexone. Low dose Naltrexone or LDN - many

neuro`s still have no clue about LDN but may have heard of the full dose version

and wonder why youre asking for it!

Good luck!

In low dose naltrexone , " laurapippin " <pipp5@...> wrote:

>

> Hi, New to group. I have MS and have been taking Avonex for the past year

since a T spine lesion showed up. I now have a cervical spine lesion that has

popped up since beginning Avonex. Since it's 30% chance of efficacy did me no

good, I really don't want to continue the shots. I see my neuro next week and

am planning to ask for naltrexone. My question is how long do you need to be

off other therapies before beginning naltrexone. I also take Celexa, Cymbalta,

Klonopin. Do I also need to taper down and stop these drugs as well? Just

trying to get all my ducks in a row before I see the neuro. Thanks.

>

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  • 3 weeks later...

I think it means that she is not finished with her treatment. I was

told take the antibiotics until ALL symptoms subside then take them 2

or 3 months longer to get what's left over before you quit. That's

what I did and it worked well for me. You also might ask about a

different antibiotic. My experience is that Amox is not strong enough.

Suzanne

On Sep 13, 2009, at 4:50 PM, masonjarbeading wrote:

> Is it normal to have a relaps the day after finishing an antibiotic

> course? My daughter just got done yesterday with a 28 day (second

> course of antibiotics)course of amox. and this evening she is now

> complaing of acute jaw pain something new he jaw never hurt befor. I

> know about relaps but this is insane one day?

> Sara

>

>

>

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Dear Sara,

     You have my sympathies. I don't know if it's normal but it's happened to

both my daughter and myself. But, for me it has also happened that I would

immediately have symptoms and then a day or two later they would go away. The

dying off of the spirochetes releases a toxin that can make you sick.

     My daughter and I have both had a lot of success with fresh squeezed lemon

water or Piquot. I've been slammed for mentioning this before, but in my

experience and the experience of my doctor it has worked very well for many

people. It certainly can't hurt.

     I know this illness is really frustrating, but I can give you hope. Three

years ago we found out that my daughter got Lyme from me in utero. She had to be

home schooled because she was too sick to get out of bed. She had a period when

she couldn't walk across the lawn because she couldn't breathe. She developed

many debilitating symptoms.

     This week when we went to the doctor, she is doing so well, we're weaning

her off her antibiotics. She plays soccer now, doesn't miss much school at all

due to Lyme and she is a normal, happy and quite healthy almost 15 year old

girl. The road was long and difficult to say the least, but our persistence and

the doctors expertise paid off.

     I was also diagnosed a short time before her and I've been off antibiotics

for months and am doing really well. I too was too ill to leave my bed for days

and now, as long as I get rest and don't indulge in too much sugar or carbs I am

symptom free.

     It seems like a dream to us, certainly a miracle. What made the difference

for us was having the right doctor who never gave up and kept tweaking the

treatment until we were better. We were also gentle with ourselves and when we

were sick, allowed ourselves to rest.

     The way I dealt with the Mom part of her being sick was to talk to friends.

I did a lot of crying and at one moment was afraid her future would be

devastated by the illness. But then she would break through and I would remember

that God was in charge and as long as we kept moving forward and didn't give up

searching for answers, she would be O.K.

     So this is a long winded way of saying, if you have a good doctor who

understands Lyme and you keep searching for answers, you will find a solution.

Remember to breathe.

     good luck,

     Annie

________________________________

From: masonjarbeading <masonjarbeading@...>

Sent: Sunday, September 13, 2009 5:50:42 PM

Subject: [ ] Question

 

Is it normal to have a relaps the day after finishing an antibiotic course? My

daughter just got done yesterday with a 28 day (second course of antibiotics)

course of amox. and this evening she is now complaing of acute jaw pain

something new he jaw never hurt befor. I know about relaps but this is insane

one day?

Sara

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I agree with Suzanne.  I was told the same thing.  We tried getting my daughter

off the antibiotics twice and symptoms returned, not as soon as a day after, but

yes in a month or so.  Someone could say it is psichological, but the third

time, after 2 full years of treatment, they did not come back, and we cross our

fingers we are truly done for good.

> Is it normal to have a relaps the day after finishing an antibiotic

> course? My daughter just got done yesterday with a 28 day (second

> course of antibiotics) course of amox. and this evening she is now

> complaing of acute jaw pain something new he jaw never hurt befor. I

> know about relaps but this is insane one day?

> Sara

>

>

>

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If you have symptoms soon after finishing abx its not really a " relapse " but

simply under treatment. That means you simply havent treated long enough or

maybe with the right meds.You have to actually be in remission and then have

return of symptoms for it to be called a true 'relapse'.and they happen.

That said, its very individual as far as how long to treat and then how long

after symptoms go away. It depends on what was affected to begin with- joints,

joints plus neuro , heart etc . It also depends upon the person's immune system

and how well it can keep the few missed bugs from taking over again. It depends

upon whats going on inside--is there a virus or vaccine we are fighting? Is

there hormonal upset due to puberty?? Was there simple Lyme or many coinfections

too? how long was the infection before starting the meds?

You can easily see how there are too many different variables to make any

generalized guess as to the right length of time, the right meds, even the right

dosing.Best to go by reaction--how well the symptoms improve.

I also agree that Amoxil for many wont be enough. Maybe for a few with very

early caught Lyme ( tick still in them) and no history of weak immune systems,

few coinfections etc. Some claim that Penicillin VK at high doses along with or

alternating with a 'cycline ( doxy, mino etc) and/or zithromax are needed

instead. Mepron for Babesia. and Bartonella coverage added, if needed.

No one set plan and no one set length of time for treating. In this set of

illnesses medicine is truly an " art " more than a " science " and the term "

practicing medicine " has great meaning, since they havent gotten it right yet..

Re: [ ] Question

I agree with Suzanne.? I was told the same thing.? We tried getting my daughter

off the antibiotics twice and symptoms returned, not as soon as a day after, but

yes in a month or so.? Someone could say it is psichological, but the third

time, after 2 full years of treatment, they did not come back, and we cross our

fingers we are truly done for good.

> Is it normal to have a relaps the day after finishing an antibiotic

> course? My daughter just got done yesterday with a 28 day (second

> course of antibiotics) course of amox. and this evening she is now

> complaing of acute jaw pain something new he jaw never hurt befor. I

> know about relaps but this is insane one day?

> Sara

>

>

>

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  • 2 weeks later...

The life cycle of the spirochete includes deer and the white footed mouse in

Wisconsin. In other areas of the country it is known to be squirrels and

other mammals.

http://www.lymeproject.com/lyme_disease/ticks/mouse.html

http://www.doyourownpestcontrol.com/white_footed_mouse.htm

http://www.ncbi.nlm.nih.gov/pubmed/3812887

Eight of the most common ospC genotypes in the northeastern US,

including I and K which are associated with disseminated human

infections, were absent in Mendocino County nymphs. OspC H3 was

associated with hardwood-dominated habitats where reservoir western gray

squirrels are commonly infected with LB spirochetes.

http://dx.doi.org/10.1128/AEM.01704-09

> [ ] question

>

> I assume that this is something that no one knows, but it

> seems a pretty basic part of understanding Lyme.

>

> What is the normal life-cycle of the spirochetes. Where do

> the ticks get them from, and where to they normally spread to

> from the ticks. I assume that infecting humans is just a

> dead-end accidental side-line for them.  But unless infected

> humans are infecting new ticks, there must be some other

> hosts and some other aspects of their life-cycle.

>

> Does anyone know about this or are they researching it???

> Know your enemy as they say.

>

>

>

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thank you, very interesting

________________________________

From: <msadams@...>

Sent: Wednesday, September 30, 2009 1:16:28 PM

Subject: RE: [ ] question

 

The life cycle of the spirochete includes deer and the white footed mouse in

Wisconsin. In other areas of the country it is known to be squirrels and

other mammals.

http://www.lymeproject.com/lyme_disease/ticks/mouse.html

http://www.doyourow npestcontrol. com/white_ footed_mouse. htm

http://www.ncbi. nlm.nih.gov/ pubmed/3812887

Eight of the most common ospC genotypes in the northeastern US,

including I and K which are associated with disseminated human

infections, were absent in Mendocino County nymphs. OspC H3 was

associated with hardwood-dominated habitats where reservoir western gray

squirrels are commonly infected with LB spirochetes.

http://dx.doi. org/10.1128/ AEM.01704- 09

> [ ] question

>

> I assume that this is something that no one knows, but it

> seems a pretty basic part of understanding Lyme.

>

> What is the normal life-cycle of the spirochetes. Where do

> the ticks get them from, and where to they normally spread to

> from the ticks. I assume that infecting humans is just a

> dead-end accidental side-line for them.  But unless infected

> humans are infecting new ticks, there must be some other

> hosts and some other aspects of their life-cycle.

>

> Does anyone know about this or are they researching it???

> Know your enemy as they say.

>

>

>

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15 or 20 minutes is a very long time to a baby. Also " distraction " isn't even a

concept for young babies. They are learning and absorbing all the time. The

distractions are as much a learning experience as the things we think they

should be playing with.

-christine

sydney, 3.5 yrs, starband grad

>

> Does anyone have a problem with there baby getting bored during play time

after only 15 or 20 min of playing with a toy?

>

> Does anyone have a baby that is easily distracted by anything during play

time?

>

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