Has LDN halted progression

[Guest guest]

In a message dated 7/14/2005 2:42:37 AM Central Daylight Time, ratfink930@... writes:

My wife has been on LDN for 3 years and there has been no halting progression never mind improvement in symptoms.

We have followed varioius advice and tried doses between 2 and 4.5 with no benefit at all.

Still taking it but really not sure why. Disappointed because we really bought into the idea that this could do some good.

J

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

So, are you saying that she has seen some symptom improvement along with progression? As for myself, I can't really say that I have progressed as much as I have had contractures and some atrophy due to very little movement, despite stretching. I have the worst form of MS, not bragging for sure, but I'm like a 8.5 - 9 on the EDSS scale. The bladder improvement that I have seen is worth so much, as I refuse to have a catheter. The doctors are amazed at how I manage. I tell them that I really don't know how I do it. Stubborn I guess. I had no symptom relief on traditional meds whatsoever. So, even though 2 years on LDN hasn't been a miracle for me, it has helped.

Marcie

[Guest guest]

J

I'm really not seeing much in the way of improvement or symptom relief, but I keep tsking it b/c I believe it has stopped some progression. I was hoping for the great things I had read, but that didn't happen. I've been taking it for 15 months.

Another thing is that if the symptoms are progressing, it seems that lyme diease is the culprit. Apparently LDN does not do anything for lyme. A lot of people who were seeing nothing on the ldn tested positive for lyme.

It's important to get a lyme literate doc and the test to get is the Western Blot from Ingenex labs the IgG and IgM. Has your wife been tested?

Arlene

[Guest guest]

> In a message dated 7/14/2005 2:42:37 AM Central Daylight Time,

> ratfink930@h... writes:

>

>

> > My wife has been on LDN for 3 years and there has been no halting

> > progression never mind improvement in symptoms.

> >

> > We have followed varioius advice and tried doses between 2 and 4.5 with no

> > benefit at all.

> >

> > Still taking it but really not sure why. Disappointed because we really

> > bought into the idea that this could do some good.

> >

> > J

>

> +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Has your wife tried the FDA approved MS meds? If so, did any of them help?

What pharmacy do you get her script of LDN filled and what is the filler being

used?

Have you tried the liquid version of LDN? if not, it's worth trying.

Has your wife ever been tested for Lyme Disease via a Western Blot blood test?

The ELISA blood test can give too many false negative resluts...the Western Blot

is more sensitive.

I'm hoping that the LDN failure is caused by one of the above and you can find

an answer soon.

[Guest guest]

I progressed on LDN, with MRI, confirmation. And also tested

negative for Lyme. Just because someone is progressing does not mean

they have lyme instead.

> J

>

> I'm really not seeing much in the way of improvement or symptom

relief, but

> I keep tsking it b/c I believe it has stopped some progression. I

was hoping

> for the great things I had read, but that didn't happen. I've

been taking

> it for 15 months.

>

> Another thing is that if the symptoms are progressing, it seems

that lyme

> diease is the culprit. Apparently LDN does not do anything for

lyme. A lot of

> people who were seeing nothing on the ldn tested positive for lyme.

>

> It's important to get a lyme literate doc and the test to get is

the Western

> Blot from Ingenex labs the IgG and IgM. Has your wife been tested?

> Arlene

[Guest guest]

The only common reason that has come up here for people not responding to LDN is miss diagnosis they have Lymes Disease. Can I suggest you get hold of the book Lymes Disease and Rife Machines ISBN 0-9763797-0-8 www.lymebook.com Obviously that may not be the reason in your case but it must be worth considering.

Dave

In a message dated 7/14/2005 2:42:37 AM Central Daylight Time, ratfink930@... writes:> My wife has been on LDN for 3 years and there has been no halting > progression never mind improvement in symptoms.> > We have followed varioius advice and tried doses between 2 and 4.5 with no > benefit at all.> > Still taking it but really not sure why. Disappointed because we really > bought into the idea that this could do some good.> > J

[Guest guest]

I know I was checked for Lyme, and it was negative. The LDN didn't

work for me, and it was MRI confirmed. Lyme is starting to sound

like another excuse. Might be as simple as the LDN just doesn't work

for everyone.

> The only common reason that has come up here for people not

responding to LDN is miss diagnosis they have Lymes Disease. Can I

suggest you get hold of the book Lymes Disease and Rife Machines ISBN

0-9763797-0-8 www.lymebook.com Obviously that may not be the reason

in your case but it must be worth considering.

>

> Dave

>

> In a message dated 7/14/2005 2:42:37 AM Central Daylight Time,

> ratfink930@h... writes:

>

>

> > My wife has been on LDN for 3 years and there has been no halting

> > progression never mind improvement in symptoms.

> >

> > We have followed varioius advice and tried doses between 2 and

4.5 with no

> > benefit at all.

> >

> > Still taking it but really not sure why. Disappointed because we

really

> > bought into the idea that this could do some good.

> >

> > J

[Guest guest]

Yes, the symptoms did increase. Secondly, your smyptoms don't have

to get worse to have MS progression. The disease can still be

attacking your body and you won't even notice it.

> > J

> >

> > I'm really not seeing much in the way of improvement or symptom

> relief, but

> > I keep tsking it b/c I believe it has stopped some

progression. I

> was hoping

> > for the great things I had read, but that didn't happen. I've

> been taking

> > it for 15 months.

> >

> > Another thing is that if the symptoms are progressing, it seems

> that lyme

> > diease is the culprit. Apparently LDN does not do anything for

> lyme. A lot of

> > people who were seeing nothing on the ldn tested positive for

lyme.

> >

> > It's important to get a lyme literate doc and the test to get

is

> the Western

> > Blot from Ingenex labs the IgG and IgM. Has your wife been

tested?

> > Arlene

>

>

>

>

>

[Guest guest]

> ,

> Concerning Lyme neither test is that accurate.

> Lyme bacteria can change shapes. It hides by changing to a cyst form or

> L form. Also they have found many co-infections.

========

Yes, I knew that but the Western Blot is better than the ELISA. Late Lyme is

very difficult to diagnose. What eats me is why Lyme is not ruled out before a

diagnosis of MS is given. ALS was the first thing I was tested for, not

MS...why can't they do the same with Lyme since Lyme mimics MS so closely¿¿¿¿¿

[Guest guest]

Naltrexone is a drug like any other and there will be

a proportion of people in whom it does not work.

I sorry to hear that your wife is in that group.

Some LDN supporters will not accept that LDN does

not stop progression in all cases of MS. I have seen

'LDN doubters' chased away from this chat room

which makes it difficult to assess what proportion

of people benefit from LDN.

For me (RRMS - 14 years) LDN has not improved

my symptoms but it is a cheap oral drug with few

side effects so is worth taking (in case it is found

to reduce MS progression in future clinical trials).

There are many drugs worth trying for progressive

MS - it mainly depends how much money you (or your

health insurer) are willing to spend and what risks

you are prepared to take.

Kind regards,

Mark

Pharmacist from Oxford England

-------------------------------------------------------------------

> From: " chiefman596 " <chiefman596@...>

> Subject: Re: Has LDN halted progression

> Yes, the symptoms did increase. Secondly, your

> smyptoms don't have to get worse to have MS

> progression. The disease can still be attacking

> your body and you won't even notice it.

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

[Guest guest]

And if it is true, it prevents some type of cancer, chrohns, etc, it is just an added bonus! Kathy

Re: Has LDN halted progression> Yes, the symptoms did increase. Secondly, your> smyptoms don't have to get worse to have MS> progression. The disease can still be attacking> your body and you won't even notice it.======================================

[Guest guest]

Hi all. After a 3-mo trial of LDN, I'm ready to call it quits. It isn't doing anything for me at easing the spasms, so the next step for me is installation of a Baclofen pump on Aug 15th to ease them, which a test I had taken last March apparently proved that I would benefit from. I'd hoped LDN would help my PPMS, which has pushed me into a w/c 4 yrs ago, and has now robbed me of my ability to transfer independently. It has been interesting to hear everyone's experiences on LDN, but in my own personal experience, I don't believe LDN had any effect on my MS at all.

Best regards, Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Mark A Sent: Sunday, July 17, 2005 4:38 AMchiefman596@...; low dose naltrexone Subject: [low dose naltrexone] Has LDN halted progression

Hello,Naltrexone is a drug like any other and there will bea proportion of people in whom it does not work.I sorry to hear that your wife is in that group.Some LDN supporters will not accept that LDN doesnot stop progression in all cases of MS. I have seen'LDN doubters' chased away from this chat roomwhich makes it difficult to assess what proportionof people benefit from LDN.For me (RRMS - 14 years) LDN has not improvedmy symptoms but it is a cheap oral drug with fewside effects so is worth taking (in case it is foundto reduce MS progression in future clinical trials).There are many drugs worth trying for progressiveMS - it mainly depends how much money you (or yourhealth insurer) are willing to spend and what risksyou are prepared to take.Kind regards,Mark Pharmacist from Oxford England-------------------------------------------------------------------> From: "chiefman596" <chiefman596@...>> Subject: Re: Has LDN halted progression> Yes, the symptoms did increase. Secondly, your> smyptoms don't have to get worse to have MS> progression. The disease can still be attacking> your body and you won't even notice it.======================================

[Guest guest]

Hi Rae,

First do you know if LDN has halted or slowed the progresion of MS? Have you had an MRI? I don't think that you have given LDN a long enough chance to see results. It isn't suppose to give you symptomatic releif. Some people get symptomatic releif but that doesn't happen to everyone.

I have been on LDN for over 2 years now. I found out from having an MRI that it stoped the progression of my disease. I will have another MRI next January and hope to see bigger changes. As far as the spasms, I was real nervous about going on LDN at the beginning. I was afraid that it might make my spasms worst then they were. I saw no changes with my spasms at the beginning. I don't remember how long it took but eventually my spasms eased up. I was on spasm medication 3 to 4 times per day and was able to go down to 2 times per day. Sometimes I forget to take one of those pills.

Really give it a lot of thought before getting the bacloflen pump. I was offered that a while ago. I had previously taken bacloflen orally and it made me so weak so I didn't want to take a chance and do the pump.

Good luck

Marie

Re: Has LDN halted progression> Yes, the symptoms did increase. Secondly, your> smyptoms don't have to get worse to have MS> progression. The disease can still be attacking> your body and you won't even notice it.======================================

[Guest guest]

Rae,

We have very similar stories. I have used a scooter for 4 years. My spaticity is horrid!. I came to LDN 5 months ago to avoid the Baclofen pump. I talked with Dr. Bihari this week about my troubles. His advice was to stay on the LDN and get the baclofen pump. I have had tiny tiny things happen on the LDN. One day my foot flexed.....one day I could lift a foot.....one day my knee had strength. None of this lasted but I was thrilled to know that some of my parts can still work. I had never had these tiny miracles before LDN.

Please email me how your life changes with the pump. I am sending you good thoughts for a miracle.

cheers, Sue Meier

..

Re: Has LDN halted progression> Yes, the symptoms did increase. Secondly, your> smyptoms don't have to get worse to have MS> progression. The disease can still be attacking> your body and you won't even notice it.======================================

[Guest guest]

--- In low dose naltrexone , " RaeAndDoug Bower " <radbower@c...>

wrote:

> Hi all. After a 3-mo trial of LDN, I'm ready to call it quits. It isn't

> doing anything for me at easing the spasms, so the next step for me is

> installation of a Baclofen pump on Aug 15th to ease them, which a test I had

> taken last March apparently proved that I would benefit from. I'd hoped LDN

> would help my PPMS, which has pushed me into a w/c 4 yrs ago, and has now

> robbed me of my ability to transfer independently. It has been interesting

> to hear everyone's experiences on LDN, but in my own personal experience, I

> don't believe LDN had any effect on my MS at all.

>

> Best regards, Rae

>

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

Rae,

Don't give up so soon.

LDN is not for symptom improvement. LDN's main purpose is to stop disease

progression and if one does get symptom improvement then that's just an added

plus. The website reads that only about 2/3 of people who go on LDN will see

symptom improvement.

Baclofen by pill or pump can be taken right along with LDN with no problem.

Three months on LDN is not near enough time to see if it will keep you from

progressing. I think you will be making a mistake at coming off it this soon.

If your disease progression is not being stopped by LDN in 6 to 9 months then

you need to look at these to see if there's a possible problem...What dose of

LDN are you on 3.0mg or 4.5mg? Where do you get your script of LDN filled? Do

you know the filler that is used?

Have you ever tried the liquid LDN? Sometimes people have absorption problems

and may need a liquid version of LDN. Don't give up LDN until you've tried the

liquid. Tonight try emptying out your capsule into a tablespoon. Then add

droplets of water, tea or orange juice and dissolve the LDN and down it chasing

it with a few sips of water. If you are not on 4.5mg, you most likely need to

be for your progressive form of MS. You may even be one that 5.0mg or even up

to 6.0mg is needed.

Get the Baclofen pump but try and give LDN at least a 9 month trial.

[Guest guest]

I have heard lots of negatives about glico -- that it's yet another form marketing rip-off, like Mannatech... Educate me privately, if you like on radbower@....

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Lori GradySent: Sunday, July 17, 2005 2:19 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Has LDN halted progression

Hi Rae,

Would you like to join our glyci friends group and see how people are improving with nutrition - glyconutrients??

lg

Re: Has LDN halted progression> Yes, the symptoms did increase. Secondly, your> smyptoms don't have to get worse to have MS> progression. The disease can still be attacking> your body and you won't even notice it.======================================

[Guest guest]

Mark, have you explored other alternatives like the Klenner or Neiper protocol since you haven't seen alot of success with LDN?

Re: Has LDN halted progression> Yes, the symptoms did increase. Secondly, your> smyptoms don't have to get worse to have MS> progression. The disease can still be attacking> your body and you won't even notice it.======================================

[Guest guest]

--- In low dose naltrexone , " RaeAndDoug Bower " <radbower@c...>

wrote:

No, I've never tried the liquid format, but I fail to see the

difference of emptying a caplet into a spoon and mixing it in water, vs..chasing

down a caplet with a swig from my handy water bottle -- seems to be just the

same thing to me...

>

> Best rgds, Rae

>

===========

Rae,

In some people liquid LDN over capsules can make a difference. Rhonda on this

forum is one and at GoodShape's forum is another the liquid LDN made a

vast difference for. They both used capsules and I know that kept

progressing on the capsules but on liquid LDN his progression has halted for

over a year now. Just keep the liquid LDN in mind.