Has anybody had an increase of lesions while on LDN?

[Guest guest]

Hi Everyone,

I've been on LDN now since July 2006. I just got the results from my last set

of MRI's in

November of this year and I have 4 new, large, inflamed lesions in my brain. I

personally feel

great, but they are there. My questions are:

Has anyone else seen an increase or had new lesions since starting LDN?

If you did see new one's, what did you do? Go back to one of the injectable

drugs?

I'm a little baffled right now what to do, because I feel great, but my

neurologist says that I

could potentially be a ticking time bomb and that I have to go back on a known

therapy so

that I don't end up in a wheel chair or worse.

Any thoughts or opinions or answers are greatly appreciated

Thanks and happy holidays to all...

Carie

[Guest guest]

Hi ;

I wonder what known therapy will guarantee you don't "don't wind up in a wheelchair or worse"? My son is in a very similar position to yours. He is quickly losing his mobility. He needs treatment but existing mainstream drugs (CRABS) have been tested and shown to reduce the frequency of MS relapses, nothing more. The disease still progresses. (as I understand it ).

He would like to take naltrexone and copaxone at the same time but we are unable to find a doctor who will agree.

The drugs don't conflict but the doctors do. I truly believe that naltrexone is his best hope so I will continue to search for a doctor that will treat him with both copaxone and naltrexone.

There is a story of someone who was completely cured of MS. His brothers kept a timeline of his developements after treatment.

www.ihavems.com is the website.

always keep hope alive;

Luigi

[low dose naltrexone] Has anybody had an increase of lesions while on LDN?

Hi Everyone,I've been on LDN now since July 2006. I just got the results from my last set of MRI's in November of this year and I have 4 new, large, inflamed lesions in my brain. I personally feel great, but they are there. My questions are:Has anyone else seen an increase or had new lesions since starting LDN?If you did see new one's, what did you do? Go back to one of the injectable drugs?I'm a little baffled right now what to do, because I feel great, but my neurologist says that I could potentially be a ticking time bomb and that I have to go back on a known therapy so that I don't end up in a wheel chair or worse.Any thoughts or opinions or answers are greatly appreciated :)Thanks and happy holidays to all...Carie

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[Guest guest]

Hi Carie,

This had come up a few times last year. I think we came to the conclusion that if you are feeling better and doing well, that is worth keeping on LDN. The number of lesions does not always determine how or what will be effected with MS. For example someone stated they only had one lesion and it was causing all sorts of problems, while someone else had lesions all over and had very little in the way of symptoms.

For now however, could you give us a run down of your dosage, type of filler, where you are getting your LDN made, what your diet is like, if you have tested for Lymes or Candida and what else you are taking. You never know when something could be improved and someone on the site might recognize a problem and be able to give you advise.

My best

Aletha

[low dose naltrexone] Has anybody had an increase of lesions while on LDN?

Hi Everyone,I've been on LDN now since July 2006. I just got the results from my last set of MRI's in November of this year and I have 4 new, large, inflamed lesions in my brain. I personally feel great, but they are there. My questions are:Has anyone else seen an increase or had new lesions since starting LDN?If you did see new one's, what did you do? Go back to one of the injectable drugs?I'm a little baffled right now what to do, because I feel great, but my neurologist says that I could potentially be a ticking time bomb and that I have to go back on a known therapy so that I don't end up in a wheel chair or worse.Any thoughts or opinions or answers are greatly appreciated :)Thanks and happy holidays to all...Carie

[Guest guest]

Carie,

This is post #39874 from July 24, 2006. It sheds great light on MRIs.

" Re: Question about Lesions?? "

" In regards to whether or not an MRI is accurate, I just have to

share… "

" About a year ago, my husband and I went to a MS conference. A great

local doctor spoke basically about how we really know close to

nothing about MS and how it works and how to truly fight it. It was

so refreshing to finally see a doctor admit that! Anyway, he

was heavily involved in various research projects and shared some

great insight with us. The one thing that stood out STRONGLY was a

series of MRI pictures….He had MRIs taken each month for about a year

with a couple of different patients. In one patient, there was

relatively no change during the time, but you could see a couple of

lesions…they stayed basically the same. In the other patient, it

showed masses of lesions, then a month later, those ones cleared away

and nothing, then the next month lesions in different places, etc…it

was constant change. Then he explained that the first on was someone

who was fine and as the study progressed had additional problems and

exacerbations. The one who had so much change going on he explained

was someone who was having NO ACTIVE symptoms or any problems with

their MS in any way. Their situation stayed the same over the course

of the study! It was SHOCKING to us….I'm sure it would be to most

doctors I know, to tell you the truth! He pointed out that

basically, the brain is in constant change, MRIs can help with some

things, but they are entirely unreliable and we need a better

method. So now I don't really care what my MRI says. It was

helpful to lead to my MS diagnosis which was then confirmed by a

spinal tap, but now I just can't believe them. I know I feel better

since I began LDN last year and I know that all other potential drugs

for MS scare the * & %)*( out of me, so I plan to stay with LDN `till

there is a cure. In the meantime, I get a kick out of hearing about

the latest study or some new wonder drug….I believe that each needs

to find what works for them and we al need to have hope for a cure

someday. Other than that, I'm happy with my basically no-side-effect

LDN and encourage anyone considering it to give it a chance. "

" in Las Vegas "

> I've been on LDN now since July 2006. I just got the results from

my last set of MRI's in

> November of this year and I have 4 new, large, inflamed lesions in

my brain. I personally feel

> great, but they are there. My questions are:

> Has anyone else seen an increase or had new lesions since starting

LDN?

[Guest guest]

, I will tell you this for sure. One can have many symptoms and no lesions or lots of lesions and no symptoms. I have had no lesions since 1999 and I am just recovering from another attack. They tell me now there is nothing they can do for me-they can find nothing wrong. Don't be coerced into taking one of these drugs because the neuro is telling you this. It is not based on solid scientific evidence. Now if you choose to go on a drug, that is your choice but don't let someone scare you into this kind of decision. Just my thoughts, Kathy

[low dose naltrexone] Has anybody had an increase of lesions while on LDN?

Hi Everyone,I've been on LDN now since July 2006. I just got the results from my last set of MRI's in November of this year and I have 4 new, large, inflamed lesions in my brain. I personally feel great, but they are there. My questions are:Has anyone else seen an increase or had new lesions since starting LDN?If you did see new one's, what did you do? Go back to one of the injectable drugs?I'm a little baffled right now what to do, because I feel great, but my neurologist says that I could potentially be a ticking time bomb and that I have to go back on a known therapy so that I don't end up in a wheel chair or worse.Any thoughts or opinions or answers are greatly appreciated :)Thanks and happy holidays to all...Carie

[Guest guest]

Hi Kathy and Luigi....Glad u took the time to check out Tim's site. This is the trial I've been watching now for 3yrs. Kathy....I also signed up and was put in their database,back in Oct. '05. Iwish u luck Kathy and wouldn't hesitate a second if I was asked to participate in the trial.As of yet, SPMS is not in their criteria....which is what I have. But in the end,this xin( T-cell vaccination) will b the ticket for us all.... NOT a bandaid,but goes to the heart of the matter. Regards, Anita

From: "Kathy Lintzenich" <mykittypaws@...>Reply-low dose naltrexone To: <low dose naltrexone >Subject: Re: [low dose naltrexone] Has anybody had an increase of lesions while on LDN?Date: Tue, 19 Dec 2006 20:18:21 -0800

Luigi, I e-mailed the guy Tim on the vaccination. I have signed up for the study which may or may not happen. I am scared of it to be honest as they faxed me alot of papers and you pretty much sign all rights away as i understand rightfully so. I would like to wait and see what the end of the year brings with this Toxavin. There are 150 people across the country in clinical trials now. You can see if they are in your area. You must have RRMS and have a diagnosis of no longer than 10 years on paper. There must be no steroids or CRABS in your body for 60 days. It is interesting and provides some hope. I am hoping it turns out to be something very wonderful for ms. Let's just pray it works and is safe. I am getting another MRI next week to see if there is any evidence of lesions. My appointment with the doctor is February 21st. i will keep you all posted. Best, Kathy oh the study is in Pompano Beach Florida but there is also one in Sarasota, Florida plus some other locations.

[low dose naltrexone] Has anybody had an increase of lesions while on LDN?

Hi Everyone,I've been on LDN now since July 2006. I just got the results from my last set of MRI's in November of this year and I have 4 new, large, inflamed lesions in my brain. I personally feel great, but they are there. My questions are:Has anyone else seen an increase or had new lesions since starting LDN?If you did see new one's, what did you do? Go back to one of the injectable drugs?I'm a little baffled right now what to do, because I feel great, but my neurologist says that I could potentially be a ticking time bomb and that I have to go back on a known therapy so that I don't end up in a wheel chair or worse.Any thoughts or opinions or answers are greatly appreciated :)Thanks and happy holidays to all...Carie

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[Guest guest]

>

> Luigi, I e-mailed the guy Tim on the vaccination. I have signed up

for the study which may or may not happen. I am scared of it to be

honest as they faxed me alot of papers and you pretty much sign all

rights away as i understand rightfully so. I would like to wait and

see what the end of the year brings with this Toxavin. There are 150

people across the country in clinical trials now. You can see if

they are in your area. You must have RRMS and have a diagnosis of no

longer than 10 years on paper. There must be no steroids or CRABS in

your body for 60 days. It is interesting and provides some hope. I

am hoping it turns out to be something very wonderful for ms. Let's

just pray it works and is safe. I am getting another MRI next week

to see if there is any evidence of lesions. My appointment with the

doctor is February 21st. i will keep you all posted. Best, Kathy

oh the study is in Pompano Beach Florida but there is also one in

Sarasota, Florida plus some other locations.

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

Congrats on the xin! I sent out some emails for that study

also, no responses yet. I'll telephone them and see whats up. The

concept of the vaccination is the most logical idea I've seen on

treatment. It's a semi original idea that borrows on the concept of

the cow pox / polio vaccine. Heck of a lot better than recycling

some old cancer drug that needs a new use patent.

Anyway, my doc who prescribed the LDN just did a DMPS challenge test

for me today. I'll report back on the data when it comes in.

[Guest guest]

Luigi, I e-mailed the guy Tim on the vaccination. I have signed up for the study which may or may not happen. I am scared of it to be honest as they faxed me alot of papers and you pretty much sign all rights away as i understand rightfully so. I would like to wait and see what the end of the year brings with this Toxavin. There are 150 people across the country in clinical trials now. You can see if they are in your area. You must have RRMS and have a diagnosis of no longer than 10 years on paper. There must be no steroids or CRABS in your body for 60 days. It is interesting and provides some hope. I am hoping it turns out to be something very wonderful for ms. Let's just pray it works and is safe. I am getting another MRI next week to see if there is any evidence of lesions. My appointment with the doctor is February 21st. i will keep you all posted. Best, Kathy oh the study is in Pompano Beach Florida but there is also one in Sarasota, Florida plus some other locations.

[low dose naltrexone] Has anybody had an increase of lesions while on LDN?

Hi Everyone,I've been on LDN now since July 2006. I just got the results from my last set of MRI's in November of this year and I have 4 new, large, inflamed lesions in my brain. I personally feel great, but they are there. My questions are:Has anyone else seen an increase or had new lesions since starting LDN?If you did see new one's, what did you do? Go back to one of the injectable drugs?I'm a little baffled right now what to do, because I feel great, but my neurologist says that I could potentially be a ticking time bomb and that I have to go back on a known therapy so that I don't end up in a wheel chair or worse.Any thoughts or opinions or answers are greatly appreciated :)Thanks and happy holidays to all...Carie

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.15.25/593 - Release Date: 12/19/2006 1:17 PM

[Guest guest]

See message #44963 from only a couple of days ago - it can take a while.

Carie wrote:

>Hi Everyone,

>

>I've been on LDN now since July 2006. I just got the results from my last set

of MRI's in

>November of this year and I have 4 new, large, inflamed lesions in my brain. I

personally feel

>great, but they are there. My questions are:

>

>Has anyone else seen an increase or had new lesions since starting LDN?

>

>If you did see new one's, what did you do? Go back to one of the injectable

drugs?

>

>I'm a little baffled right now what to do, because I feel great, but my

neurologist says that I

>could potentially be a ticking time bomb and that I have to go back on a known

therapy so

>that I don't end up in a wheel chair or worse.

>

>Any thoughts or opinions or answers are greatly appreciated

>

>Thanks and happy holidays to all...

>

>Carie

>

[Guest guest]

what is CRABS??

MARSHIRIS

[Guest guest]

Copaxone, Rebif, Avonex, Betaseron!

The "C. R. A. B " drugs!

Re: [low dose naltrexone] Has anybody had an increase of lesions while on LDN?

what is CRABS??

MARSHIRIS

[Guest guest]

>

> what is CRABS??

>

> MARSHIRIS

>

=========

I've always written it CRAB or CRAB's...stands for Copaxone, Rebif,

Avonex, Betaseron.

[Guest guest]

For those with MS, they are the 4 most prescribed drugs (all expensive, injecable and have nasty side effects).

Re: [low dose naltrexone] Has anybody had an increase of lesions while on LDN?

what is CRABS??

MARSHIRIS

[Guest guest]

>

> Copaxone, Rebif, Avonex, Betaseron!

> The " C. R. A. B " drugs!

> Re: [low dose naltrexone] Has anybody had an increase of

lesions while on LDN?

>

>

>

> what is CRABS??

>

> MARSHIRIS

>

I would describe CRAB's as W.O.R.T.H.L.E.S.S.

[Guest guest]

Anita, will you write me personally? I have some reservations about this and would just like to ask you a couple of questions. Thanks, kathy

[low dose naltrexone] Has anybody had an increase of lesions while on LDN?

Hi Everyone,I've been on LDN now since July 2006. I just got the results from my last set of MRI's in November of this year and I have 4 new, large, inflamed lesions in my brain. I personally feel great, but they are there. My questions are:Has anyone else seen an increase or had new lesions since starting LDN?If you did see new one's, what did you do? Go back to one of the injectable drugs?I'm a little baffled right now what to do, because I feel great, but my neurologist says that I could potentially be a ticking time bomb and that I have to go back on a known therapy so that I don't end up in a wheel chair or worse.Any thoughts or opinions or answers are greatly appreciated :)Thanks and happy holidays to all...Carie

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.15.25/593 - Release Date: 12/19/2006 1:17 PM

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[Guest guest]

I say I'm on a NO CARBs diet.

CRAB, CARB, whatever... none for me, thank you

Re: [low dose naltrexone] Has anybody had an increase of lesions while on LDN?

what is CRABS??

MARSHIRIS

[Guest guest]

THANX FOR EXPLANATION OF carbs/crabs!!! LOL

Marshiris

[Guest guest]

Kathy...U asked me to write u personally,which I did. I sent u an e-mail but no reply or questions from u that u wanted to ask me.....whats up ?? Anita

From: "Kathy Lintzenich" <mykittypaws@...>Reply-low dose naltrexone To: <low dose naltrexone >Subject: Re: [low dose naltrexone] Has anybody had an increase of lesions while on LDN?Date: Wed, 20 Dec 2006 11:54:25 -0800

Anita, will you write me personally? I have some reservations about this and would just like to ask you a couple of questions. Thanks, kathy

[low dose naltrexone] Has anybody had an increase of lesions while on LDN?

Hi Everyone,I've been on LDN now since July 2006. I just got the results from my last set of MRI's in November of this year and I have 4 new, large, inflamed lesions in my brain. I personally feel great, but they are there. My questions are:Has anyone else seen an increase or had new lesions since starting LDN?If you did see new one's, what did you do? Go back to one of the injectable drugs?I'm a little baffled right now what to do, because I feel great, but my neurologist says that I could potentially be a ticking time bomb and that I have to go back on a known therapy so that I don't end up in a wheel chair or worse.Any thoughts or opinions or answers are greatly appreciated :)Thanks and happy holidays to all...Carie

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[Guest guest]

Hi Anita, I never got the e-mail. My computer has been acting out. Anyway, I had intense reservations about the Toxavin. Tim's dad has a financial interest in getting that drug approved. That doesn't bother me as much as the fact that it has been investigated since early nineties and he is the ONLY one I have read who writes anything about it. They sent me an informed consent and you should read the side effects that could happen...muscle weakness, blurred vision, some scary stuff. I don't have that stuff now and if I do have muscle weakness it comes and goes. With this vaccination, it might come and stay! Who knows. There are 150 who are going to be in this trial. I am going to wait for the outcome. What do you know about it? I do realize there are risks with most things but why isn't anyone else telling their story besides Tim? Am I missing something? Best, Kathy

[low dose naltrexone] Has anybody had an increase of lesions while on LDN?

Hi Everyone,I've been on LDN now since July 2006. I just got the results from my last set of MRI's in November of this year and I have 4 new, large, inflamed lesions in my brain. I personally feel great, but they are there. My questions are:Has anyone else seen an increase or had new lesions since starting LDN?If you did see new one's, what did you do? Go back to one of the injectable drugs?I'm a little baffled right now what to do, because I feel great, but my neurologist says that I could potentially be a ticking time bomb and that I have to go back on a known therapy so that I don't end up in a wheel chair or worse.Any thoughts or opinions or answers are greatly appreciated :)Thanks and happy holidays to all...Carie

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.15.25/593 - Release Date: 12/19/2006 1:17 PM

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