MS

[Guest guest]

No disrespect intended here, but making your own could be done by my 8 year old son. It is not hard to drop a tablet in 50ml of distilled water, and draw up to the 4.5 ml line on a needless syringe once the tablet has dissolved.And I feel that making your own is the BEST way to go even if you have a doctor overseeing you, at least until you hit the optimal dose. (Plus, there is no risk of a reaction to the filler.) That way, if 4.5 ml is too much, you can lower the dose as easy as only drawing up 1.5ml. or 3.0 ml. etc. Once you reach your perfect dose, the compounded LDN is easier, because you just take a pill, and don't have to worry about keeping it cold, and mixing it.However, to have a doctor on board would be the best.Saundra Renz

Earth, protect her for she is our life!!!>> My husband has MS and has tried about everything out there. They even > had him do some Chemo to try to slow the progress down. I feel it has > not done one anything for him.> Would like to go to CA for the meeting on this drug. We live in > Minnesota and there is no where to get this drug in our state. If a > person starts this drug, how often do you need to get checked and meet > with your doctor. > Can some one tell me what the price is and how

long a

fill last?> > I also have a dad that has parkinson. Will this help any?> > Thanks for all you help...> > mills5_98_99>

[Guest guest]

Hi Saundra,

Am interested in why you say " Plus, there is NO risk of a reaction to

the filler. " Given the tablet is mainly filler I don't agree. Less

risk than with a capsule yes, but not NO risk.

Cheers,

Saundra Renz wrote:

> No disrespect intended here, but making your own could be done by my 8

> year old son. It is not hard to drop a tablet in 50ml of distilled

> water, and draw up to the 4.5 ml line on a needless syringe once the

> tablet has dissolved.

> And I feel that making your own is the BEST way to go even if you have

> a doctor overseeing you, at least until you hit the optimal dose.

> (Plus, there is no risk of a reaction to the filler.) That way, if 4.5

> ml is too much, you can lower the dose as easy as only drawing up

> 1.5ml. or 3.0 ml. etc. Once you reach your perfect dose, the

> compounded LDN is easier, because you just take a pill, and don't have

> to worry about keeping it cold, and mixing it.

> However, to have a doctor on board would be the best.

>

> Saundra Renz

>

[Guest guest]

I thought the tablets were pure 50mg naltrexone? Maybe I am wrong. So sorry if that is the case!Saundra Renz

Earth, protect her for she is our life!!!

> No disrespect intended here, but making your own could be done by my 8

> year old son. It is not hard to drop a tablet in 50ml of distilled

> water, and draw up to the 4.5 ml line on a needless syringe once the

> tablet has dissolved.

> And I feel that making your own is the BEST way to go even if you have

> a doctor overseeing you, at least until you hit the optimal dose.

> (Plus, there is no risk of a reaction to the filler.) That way, if 4.5

> ml is too much, you can lower the dose as easy as only drawing up

> 1.5ml. or 3.0 ml. etc. Once you reach your perfect dose, the

> compounded LDN is easier, because you just take a pill, and don't have

> to worry about keeping it cold, and mixing it.

> However, to have a doctor on board would be the best.

>

> Saundra Renz

>

[Guest guest]

If there is a filler in there, I guess that would explain why my daughter got nauseated after taking her LDN. Saundra Renz

Earth, protect her for she is our life!!!

> No disrespect intended here, but making your own could be done by my 8

> year old son. It is not hard to drop a tablet in 50ml of distilled

> water, and draw up to the 4.5 ml line on a needless syringe once the

> tablet has dissolved.

> And I feel that making your own is the BEST way to go even if you have

> a doctor overseeing you, at least until you hit the optimal dose.

> (Plus, there is no risk of a reaction to the filler.) That way, if 4.5

> ml is too much, you can lower the dose as easy as only drawing up

> 1.5ml. or 3.0 ml. etc. Once you reach your perfect dose, the

> compounded LDN is easier, because you just take a pill, and don't have

> to worry about keeping it cold, and mixing it.

> However, to have a doctor on board would be the best.

>

> Saundra Renz

>

[Guest guest]

I believe a member here, Destiny, has a father with Parkinson's

Disease who uses LDN.

Hopefully she'll chime in with their experinece.

Art

--

>

> My husband has MS and has tried about everything out there. They

even

> had him do some Chemo to try to slow the progress down. I feel it

has

> not done one anything for him.

> Would like to go to CA for the meeting on this drug. We live in

> Minnesota and there is no where to get this drug in our state. If

a

> person starts this drug, how often do you need to get checked and

meet

> with your doctor.

> Can some one tell me what the price is and how long a fill last?

>

> I also have a dad that has parkinson. Will this help any?

>

> Thanks for all you help...

>

> mills5_98_99

>

[Guest guest]

Basically you're right, but for those who can not find a doctor to

prescribe LDN capsules, the liquid homedmade method is better than

nothing and in fact many feel it is better than capsules as they are

able to adjust dosage on their own.

Art

--

>

> Just my two cents.  If you get a script, IMHO it is better to have it

filled at a comounding pharmacy than try to make it yourself. 

Eliminates most possibilities of error, and if there are unusual side

effects, you can discuss with the pharmacist.  Better to have

consistant contols on dosages and fillers / mixtures if you have the

option.

>

[Guest guest]

Art,

Yeah I agree with you but if i had an option, I would opt for the pharmacy, at least initially. A lot has been written about following the Bihari protocal which directs 4.5 mg. Modifying doses is at your own risk (ok not risk, but responsibility if it doesn't work) But if I could not get an RX then you'll find me crushing tablets as well!

Just a side note, I know someone who prefers the liquid (it was compounded) because she feels the response is greater. It might have been the filler or possibly her MS is not allowing absorbtion as well of the caps, but she SWEARS by the liquid, nasty taste is worth it for her. She quit Tysabri in favor of LDN. Tysabri made her feel worse, and now more risks are coming out.

BC

From: Art Hansen <rtee54@...>Subject: [low dose naltrexone] Re: MSlow dose naltrexone Date: Saturday, August 9, 2008, 1:16 PM

Basically you're right, but for those who can not find a doctor to prescribe LDN capsules, the liquid homedmade method is better than nothing and in fact many feel it is better than capsules as they are able to adjust dosage on their own.Art-->> Just my two cents. If you get a script, IMHO it is better to have it filled at a comounding pharmacy than try to make it yourself. Eliminates most possibilities of error, and if there are unusual side effects, you can discuss with the pharmacist. Better to have consistant contols on dosages and fillers / mixtures if you have the option.>

[Guest guest]

As for the taste of the liquid that you make, you may be surprised at the difference about 5 drops of Stevia makes to 50ml. Taste not at all bad then.

Re: [low dose naltrexone] Re: MS

But if I could not get an RX then you'll find me crushing tablets as well!

Just a side note, I know someone who prefers the liquid (it was compounded) because she feels the response is greater. It might have been the filler or possibly her MS is not allowing absorbtion as well of the caps, but she SWEARS by the liquid, nasty taste is worth it for her. She quit Tysabri in favor of LDN. >

[Guest guest]

A little trick I learned to lessen the bitter taste of homemade

liquid LDN, besides using Stevia (which does work), is to drop one

50mg Naltrexone tablet in 100ml of distilled water, rather than 50ml

of water. Draw up 9mls in your graduated medicine dropper and you

should be administering 4.5mgs LDN. Make sure to shake the bottle

well first.

Art

--

>

> Art,

> Yeah I agree with you but if i had an option, I would opt for the

pharmacy, at least initially.  A lot has been written about following

the Bihari protocal which directs 4.5 mg.  Modifying doses is at your

own risk (ok not risk, but responsibility if it doesn't work)  But if

I

could not get an RX then you'll find me crushing tablets as well!

> Just a side note, I know someone who prefers the liquid (it was

compounded) because she feels the response is greater.  It might have

been the filler or possibly her MS is not allowing absorbtion as well

of the caps, but she SWEARS by the liquid, nasty taste is worth it

for

her. She quit Tysabri in favor of LDN. Tysabri made her feel worse,

and

now more risks are coming out.

> BC

[Guest guest]

STEVIA !!! What a great idea! I always have to be careful as it is pretty sweet, but very tasty and not bad for you.

From: cotton <cotteni@...>Subject: Re: [low dose naltrexone] Re: MSlow dose naltrexone Date: Saturday, August 9, 2008, 5:25 PM

As for the taste of the liquid that you make, you may be surprised at the difference about 5 drops of Stevia makes to 50ml. Taste not at all bad then.

Re: [low dose naltrexone] Re: MS

But if I could not get an RX then you'll find me crushing tablets as well!

Just a side note, I know someone who prefers the liquid (it was compounded) because she feels the response is greater. It might have been the filler or possibly her MS is not allowing absorbtion as well of the caps, but she SWEARS by the liquid, nasty taste is worth it for her. She quit Tysabri in favor of LDN. >

[Guest guest]

I find what you shared most inspiring.I have m.s now four years.My story is similar to yours.Thankyou for sharing this Bridget and good luck with L.D.N.

Clare.

[low dose naltrexone] ms

I have multiple sclerosis but it does not have me.I now claim this disease that has moved in and taken up residence in my body.That being said I am still a mom,a wife, a daughter, a sister, a friend.But most importantly I am Bridget.Ive had M.S. for over 15 years.I worked as a registered nurse since 1982 but this disease took my job from me but not all my knowledge, experiences and the person I am today.When you lose a part of your life,you grieve and you move forward.I am a very positive person and I took all my energy and I gave it to my children.So in essence my MS gave me more time with my two children.It was a blessing. I have one regret and I did not realize it until I joined your group.I was letting everyone decide for me my treatment.So after 15 years and copaxone,betaserone,rebif, and finally tysabri I wandered onto this site and here I am. I should be starting my ldn next week.I believe in fate and that everything happens for a reason.This was m! eant to happen and I needed to experience all I did so I would stop,take the time to read,and look within to see I am here at this point because I need to be.Ill get back to you all next week as I begin this journey.Thank you all for setting up this site and by giving of yourselves to make others aware of alternatives that can actually improve their diseases. Bridget

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.29/2023 - Release Date: 03/25/09 18:54:00

[Guest guest]

That was a great piece. I sent it to my MS pals.

From: Clare Magee <claremagee@...>Subject: Re: [low dose naltrexone] mslow dose naltrexone Date: Thursday, March 26, 2009, 6:06 AM

I find what you shared most inspiring.I have m.s now four years.My story is similar to yours.Thankyou for sharing this Bridget and good luck with L.D.N.

Clare.

[low dose naltrexone] ms

I have multiple sclerosis but it does not have me.I now claim this disease that has moved in and taken up residence in my body.That being said I am still a mom,a wife, a daughter, a sister, a friend.But most importantly I am Bridget.Ive had M.S. for over 15 years.I worked as a registered nurse since 1982 but this disease took my job from me but not all my knowledge, experiences and the person I am today.When you lose a part of your life,you grieve and you move forward.I am a very positive person and I took all my energy and I gave it to my children.So in essence my MS gave me more time with my two children.It was a blessing. I have one regret and I did not realize it until I joined your group.I was letting everyone decide for me my treatment.So after 15 years and copaxone,betaserone ,rebif, and finally tysabri I wandered onto this site and here I am. I should be starting my ldn next week.I believe in fate and that everything happens for a

reason.This was m! eant to happen and I needed to experience all I did so I would stop,take the time to read,and look within to see I am here at this point because I need to be.Ill get back to you all next week as I begin this journey.Thank you all for setting up this site and by giving of yourselves to make others aware of alternatives that can actually improve their diseases. Bridget

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.29/2023 - Release Date: 03/25/09 18:54:00

[Guest guest]

Bridget, your share was heartfelt and inspiring. Welcome to LDN and our

chat. Good luck, Deb

diagnosis MS, 1995

[Guest guest]

Ken have you researched Marshall Protocol? I used this very successfully. They use minocycline as primary antibiotic, but lower dose and pulsed everyother day. Also, use Benicar everyday.Then add in other anitbiotics along the way.

From: low dose naltrexone on behalf of Ken Sent: Tue 1/5/2010 6:45 AMlow dose naltrexone Subject: [low dose naltrexone] MS

Hi ,Once Lyme Bacteria (Borellia Burgdorferi) gets into your Central Nervous System, it infects your nerve tissue. Your immune system, once it starts keying off the bacteria's antigens, will cross the blood brain barrier into the CNS in an attempt to combat it. The creates inflamation. This inflamation is what damages the myelin that coats your axons.This is one of the main reasons why Lyme can often be misdiagnosed as MS. It is my personal belief that MS actually IS Chronic Neurological Lyme disease.This is precisely my case. I have Chronic Neurological Lyme Disease. But to any neurologist who just goes by the CDC textbook definition of Lyme Disease.....it is MS to them.I am seeing a LLMD. It took months of research to find one and then convince him to treat me. He first prescribed doxycycline and amoxicillian for two months....but when my latest MRI's revealed I have two new lesions (one in my neck and one in my brain....they are both small, but active) he has put me on minocycline. Doxy and amoxy don't cross the BBB. Minocycline does. The goal right now is to stay on mino for three months and have a follow up MRI on my neck to see if the new lesion goes inactive and shrinks.Lyme is a horrible bug. Very nasty, complex and extremely difficult to diagnose and treat.I would be happy to send you the information I have if you are interested in pursuing lyme as a diagnosis and everything you'll need to know and do to start down that path. Just let me know.Thanks.KenC.

Hi all,

Does anyone know if you can still have the scars/lesions associated with multiple sclerosis, but have lyme disease (not actual MS)?

Any advice is appreciated!

Thanks -

[Guest guest]

Interesting thing. My test were clsoe to normal prior. I did it and it worked. I took mino ,high dose for a while, small herx. The on MP and doing Benicar, very small doses of Mino worked strongly. you start out at less than 25mg and then go up to 50 mg everyother day. My guess is that pulsing allows the body to help fight the bacteria ,without the buggers going into hiding. I think with too much antibiotics many bacteria transform into cysts form and are hard to kill.I beleive that is the strength of MP, pulsing smaller doses and the benicar, somehow magnifies the antibiotics.

From: Ken [mailto:cleremond2000@...]Sent: Tue 1/5/2010 8:13 AMlow dose naltrexone ; Ron BallSubject: MS

I have asked my LLMD about the Marshall Protocol. He is quite familiar with it but recommends that it is mainly for patients who's CD57 is way out of whack. Mine isn't. He is keeping it an option but is recommending against it for me right now.He currently has me on minocycline 100mg/3xday....This is a HEAVY dose as standard dose usually is only 200mg. His reasoning is because of the active lesions in my neck and brain. He's hoping the high dose will suppress the activity. Its a 3 month test run. We'll see. He's keeping me on LDN as well saying that my immune system needs all the help it can get. Those extra beta-endorphins can't hurt.I'm fighting something viral right now as well as I have a pretty bad sinus infection I'm dealing with. Hoping that goes away soon.KenC.

Ken have you researched Marshall Protocol? I used this very successfully. They use minocycline as primary antibiotic, but lower dose and pulsed everyother day. Also, use Benicar everyday.Then add in other anitbiotics along the way.

[Guest guest]

Ken , many on the ProHealth Board stayed with the Marshall Protocol and reported they regret doing it, many reported negative results with all those drugs.

RE: [low dose naltrexone] MS

Ken have you researched Marshall Protocol? I used this very successfully. They use minocycline as primary antibiotic, but lower dose and pulsed everyother day. Also, use Benicar everyday.Then add in other anitbiotics along the way.

From: low dose naltrexone on behalf of Ken Sent: Tue 1/5/2010 6:45 AMlow dose naltrexone Subject: [low dose naltrexone] MS

Hi ,Once Lyme Bacteria (Borellia Burgdorferi) gets into your Central Nervous System, it infects your nerve tissue. Your immune system, once it starts keying off the bacteria's antigens, will cross the blood brain barrier into the CNS in an attempt to combat it. The creates inflamation. This inflamation is what damages the myelin that coats your axons.This is one of the main reasons why Lyme can often be misdiagnosed as MS. It is my personal belief that MS actually IS Chronic Neurological Lyme disease.This is precisely my case. I have Chronic Neurological Lyme Disease. But to any neurologist who just goes by the CDC textbook definition of Lyme Disease.....it is MS to them.I am seeing a LLMD. It took months of research to find one and then convince him to treat me. He first prescribed doxycycline and amoxicillian for two months....but when my latest MRI's revealed I have two new lesions (one in my neck and one in my brain....they are both small, but active) he has put me on minocycline. Doxy and amoxy don't cross the BBB. Minocycline does. The goal right now is to stay on mino for three months and have a follow up MRI on my neck to see if the new lesion goes inactive and shrinks.Lyme is a horrible bug. Very nasty, complex and extremely difficult to diagnose and treat.I would be happy to send you the information I have if you are interested in pursuing lyme as a diagnosis and everything you'll need to know and do to start down that path. Just let me know.Thanks.KenC.

Hi all,

Does anyone know if you can still have the scars/lesions associated with multiple sclerosis, but have lyme disease (not actual MS)?

Any advice is appreciated!

Thanks -

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.125/2600 - Release Date: 01/04/10 11:35:00

[Guest guest]

I just want to pass on some interesting information

I learned from someone involved with Pomerado Hospital in Southern

California. I read on this forum quite a while ago that a doctor

in Italy or Spain, not sure from where, had discovered what he

felt was a cure for MS. It also is helpful for other illnesses

including Alzheimer.

The hospital is doing research on a treatment or procedure that

reams out the venus side of the carotid artery in the neck. If

done early on, it seems to reverse the symptoms. Worth

investigating.

Many MS diagnosed patients may really have Lyme disease. So this

is another avenue to investigate.

Happy New Year to all. May it bring better health to everyone!

[Guest guest]

A friend of mine has Multiple Sclerosis. She asked if AP treatment could help

her. I didn't know what to say. I haven't seen any posts regarding MS so

thought I'd ask. Thank you.

[Guest guest]

Hi,

have your friend check in LDN (low dose Naltrexon). it has helped many people

with MS. Have your friend just type in low ndose Naltrexon and your friend will

get  of lots of info for MS. There is also a LDN group.

Eva

From: alaskabuffalohunt <buffalogal06@...>

Subject: rheumatic MS

rheumatic

Date: Thursday, January 27, 2011, 10:29 PM

 

A friend of mine has Multiple Sclerosis. She asked if AP treatment could

help her. I didn't know what to say. I haven't seen any posts regarding MS so

thought I'd ask. Thank you.

[Guest guest]

My daughter has M.S. as well as scleroderma. She was on the AP treatment

-which did stop the progression of the S.D. and reverse several symptoms-but

her M.S. symptoms weren't affected by the treatment, unfortunately.

From: rheumatic [mailto:rheumatic ] On Behalf

Of alaskabuffalohunt

Sent: Thursday, January 27, 2011 11:30 PM

rheumatic

Subject: rheumatic MS

A friend of mine has Multiple Sclerosis. She asked if AP treatment could

help her. I didn't know what to say. I haven't seen any posts regarding MS

so thought I'd ask. Thank you.

[Guest guest]

Thank you very much for the responses regarding MS. I'll print these off

and get them to my friend.

I started AP for my " new " RA 2 months ago. Intending to be totally well

thanks to Dr. S and all your helps.

blessings!

[Guest guest]

Hello, mickie

Should have included the following anecdote: My friend, Dr. Max Garten

(Civilized Diseases and Their Circumvention) had a patient with verified MS and

was wheelchair-bound. First thing he did was have her get the amalgam (mercury

fillings) removed, but it took almost a year before she was walking, then

running and within another year she became a mother. I know the ADA cites a

massive study like 5000 individuals over 20 years not a single one developed MS,

yet all had amalgam fillings.

Still, I would err on the side of caution and experience, if I had MS I would

not just try ANYTHING--but EVERYTHING.

Regards,

________________________________

[Guest guest]

Hi

are you talking about the CCSVI (Chronic CerebroSpinal Venous Insufficiency) procedure bing done around the world?

It certainly is a HUGE deal to those of us who've fallen victim to 'MS'.

I've had the procedure and am now again able to walk and ride my exercise bike - the procedure has varying results because it is different for each individual.

It truly deserves the publicity when it has helped so many - getting the word out about it AND about LDN is how I spend most of my days in the effort to truly help others who have had the letters 'MS' written in their medical files.

Good idea regarding sending through feedback or responses about LDN - it could work very well!

Another idea would be to 'tweet' about it and get it out there in the same fashion as Charlie Sheen has been causing his 'tweets' about a lot of his weird oddities like Tigerblood etc to 'trend'.

*shrugs*

dunno - just an idea

'What we do in life, echoes through eternity.'MARCUS AURELIUS (121 - 180 A.D.)

low dose naltrexone From: s.macgilxrist@...Date: Mon, 7 Mar 2011 14:47:10 +0000Subject: [low dose naltrexone] MS

There is an article in the Daily Telegraph about a new treatment for MS in the Health section. It looks invasive and costly and moderately successful, unlike LDN.

[Guest guest]

Hi

I'm sorry, I didn't think I was coming across that you were against the procedure and I certainly didn't mean to at all.

I'm just VERY passionate about it because it helps so many....and lots of us here in the UK are on LDN already before we have the procedure.

The procedure itself doesn't actually work as well for people further down the 'MS' road so it is something people should look into straight away because the sooner they have it done, the better their results. There's no reason for them not to be on LDN before, during and after CCSVI testing, procedure and recovery so it isn't something which would impede on LDN's status in the 'MS' fight.

I think it's imperative that we all spread the word about both treatments so that people can benefit from both treatments if they choose to.

I don't 'tweet' either lol - I suggested it in case someone else in the group thought it a good idea and wanted to get the word out that way....if they're more tech-savvy than I am. *shugs* I'm just an Ideas-girl!

I don't do the whole 'tweeting' thing either - maybe once I have an iPhone I will, but right now I'll stick to my old phone!

If anyone in the group wants informtion on CCSVI, I'm happy to get you out as much information as you might want/need. I've been researching it for 3years+ now so have LOTS of the right info - just say the word and I'll be happy to get it out to you.

RachAel

'What we do in life, echoes through eternity.'MARCUS AURELIUS (121 - 180 A.D.)

Date: Tue, 8 Mar 2011 13:54:52 +0000From: s.macgilxrist@...Subject: Re: [low dose naltrexone] MSrachael.m.thomas@...

Hi ,

I am not against this procedure in itself. It's just that it's much simpler and cheaper to take LDN. For those people who are further advanced in their illness, may be it is a good solution to try the treatment proposed in the article, because, although there have been cases of the MS regressing with ldn, I have heard that this is not always guaranteed.

[Guest guest]

Hi

As someone who has had great results from the procedure, I'm very positive about it ansd as someon who has bee researching CCSVI for the past 3+years, I have a lot of faith in it. For me and for many others it has not been a matter o 'false hope' -far from it actually!

Some who've had irreversible damage haven't had results as others have reported, but healing takes time. Give these bodies a chance to mend themselves! I know that my body is responding to exercise and the rebuilding of muscle and my body is healing well - I can tell.

My NeuroPhysio is hugely impressed at how my walking is improving from after the procedure. *shrugs*

Each person will have their results and we shouldn't be comparing results as it is always going to be different to others' anyway.

I respect that others are fearful and perhaps doubtful about it, but as is the same with EVERY treatment for 'MS', each individual will have individual results and there are no guarantees of specific results because of this.

We also must remember that on top of that, each person heals at a different rate and each individual body must be given the chance to heal itself before being judged as not having had any affect.

I think it's terriffic that you get good results from LDN - stick with it! I will never get off it - it has helped so much with the pain so I do rave about it to people!

Lets do as you say and just wait and see - results will be forthcoming from studies and from the people who're having the procedures currently, and they'll be just as happy to share their experiences too I'm sure.

'What we do in life, echoes through eternity.'MARCUS AURELIUS (121 - 180 A.D.)

Date: Tue, 8 Mar 2011 11:05:20 +0000From: peter.nicholls@...Subject: Re: [low dose naltrexone] MSrachael.m.thomas@...; low dose naltrexone ; low dose naltrexone ; mscured

dear rachael, i have the fear that ccsvi is having the same impact as stem cells, ie false hope and i am not being negative

i am staying with ldn for 12 months and by then the ccsvi proceedure will have developed

fingers X for all those that try any proceedure where they think it will help their situation