Re: Using Tysabri

[Guest guest]

DBoss,

Thanks for your response. So you really didn't give Tysabri a try beyond the

one infusion? I've been on it for 6 months and I'm still not convinced to

take LDN as a stand-alone MS med. My neuro doc is very reluctant to

give me a prescription for LDN and especially for me to stop Tysabri

all together.

[low dose naltrexone] Using Tysabri

I started LDN one week after my last Tysabri injection. I saw almost immediate bladder help as well as clearer thinking. About the time for my next Tysabri (which I did not take) I definitely saw improvement in my general MS symptoms (I have had MS for about 20 years). The last few weeks I believe I am seeing the “it will get worse before it gets better”. I’m 6-7 weeks into LDN, and have no reason to stop it. The risks (none) of it over any other MS drug make it the only intelligent choice in my mind. Nothing I’ve read or heard has done anything but strengthen my resolve. I may not get any better, but also not any worse. That’s plenty good for me.

DBoss

[Guest guest]

Tysabri is apparently an immune suppressant so using it and LDN together

would potentially result in each partly or wholly negating the effect of

the other. Waste of time and money.

chris noellert wrote:

> DBoss,

> Thanks for your response. So you really didn't give Tysabri a try

> beyond the

> one infusion? I've been on it for 6 months and I'm still not convinced to

> take LDN as a stand-alone MS med. My neuro doc is very reluctant to

> give me a prescription for LDN and especially for me to stop Tysabri

> all together.

[Guest guest]

,

Yes that's what I've read! My neuro doc is very nervous about me

using LDN by itself so I'm trying to convince him it's worth a try

with knowledge I've given him and all the great MS testimonials.

So is it your understanding that most MSers who use LDN use it

as a stand-alone MS Med?

Re: [low dose naltrexone] Using TysabriTysabri is apparently an immune suppressant so using it and LDN together would potentially result in each partly or wholly negating the effect of the other. Waste of time and money.chris noellert wrote:> DBoss,> Thanks for your response. So you really didn't give Tysabri a try > beyond the> one infusion? I've been on it for 6 months and I'm still not convinced to> take LDN as a stand-alone MS med. My neuro doc is very reluctant to> give me a prescription for LDN and especially for me to stop Tysabri> all

together.------------------------------------

[Guest guest]

That is ALL I ever used. I refuse the CRABs, never ever even considered Tysabri.

I take LDN 3.0 MG along with a B1 100 MG vitamin every day, that's it. Since 4/17/03

-- LarryGC/LarryLDN LDN Info rrms

^^ mystory

Re: [low dose naltrexone] Using Tysabri

,

Yes that's what I've read! My neuro doc is very nervous about me

using LDN by itself so I'm trying to convince him it's worth a try

with knowledge I've given him and all the great MS testimonials.

So is it your understanding that most MSers who use LDN use it

as a stand-alone MS Med?

[Guest guest]

FDA Warns of Tysabri Liver Risk

Tysabri

Linked to Possible Liver Damage; Drug Treats Multiple Sclerosis and Crohn's

Disease

By Miranda Hitti

WebMD Medical News

Reviewed by Louise Chang, MD

Feb. 27, 2008 -- The FDA today announced that Tysabri, a drug used

to treat multiple sclerosis and Crohn's disease, has a new warning about possible risk of liver injury.

Doctors should tell patients about the risk and stop Tysabri in

patients with jaundice or other signs (such as lab tests) of significant

liver injury, according to a letter sent to doctors by Tysabri's marketers, the

drug companies Biogen Idec and Elan.

Tysabri's new warning notes postmarketing reports of patients

taking Tysabri who developed liver injury, including markedly elevated blood

levels of liver enzymes and high levels of bilirubin. Bilirubin is made when

red blood cells break down. Too much bilirubin can cause jaundice.

Some of those patients experienced liver injury as early as six

days after starting Tysabri. Others developed liver injury later, after getting

multiple doses of Tysabri, which is a biologic drug given by health care

professionals at infusion centers.

Tysabri

Timeline

The FDA first approved Tysabri in November

2004 for the treatment of

multiple sclerosis.

In February

2005, Biogen Idec and Elan

took Tysabri off the market after three people out of about 3,000 patients

taking Tysabri in clinical trials developed a rare, serious brain infection

called progressive multifocal leukoencephalopathy (PML). Two of those patients

died.

In March 2006, researchers reported no

new cases of PML in patients who took

Tysabri before the drug's suspension. An FDA

panel unanimously recommends

returning Tysabri to the market.

In June

2006, the FDA allowed Tysabri

back on the market under a restricted distribution program -- and with a

"black box" warning (the FDA's sternest warning) about PML risk --

for the treatment of relapsing forms of multiple sclerosis.

On Jan.

14, 2008, the FDA approved

Tysabri for the treatment of Crohn's disease.

On Feb.

7, 2008, The New England

Journal of Medicine published a letter from researchers who noticed that

two multiple sclerosis patients developed malignant melanoma, a form of skin cancer, soon

after starting Tysabri treatment. Both patients had moles that became malignant after they started Tysabri treatment. But

it's not clear if Tysabri was responsible for that.

Multiple Sclerosis Drug May Be Linked to Melanoma By

Gardner

HealthDay Reporter

Wed Feb 6, 5:23 PM ET

WEDNESDAY, Feb. 6 (HealthDay News) -- Almost immediately

after a 46-year-old woman with multiple sclerosis received her first dose of

the drug Tysabri, a mole that had been on her shoulder for years suddenly took

on a dangerous new character.

It turned out to be a melanoma that spread like wildfire.

The woman now has just a few months to live.

At almost the same time, a 45-year-old woman who also has

multiple sclerosis developed melanoma in her retina after receiving several

doses of Tysabri. She had a family history of melanoma and also had atypical

moles on her body; the mole on her retina went back at least nine years.

Although these are just two -- albeit dramatic -- examples,

the authors of a letter in the Feb. 7 issue of the New England Journal of

Medicine are cautioning doctors who care for MS patients to keep this potential

risk in mind.

"Neurologists who have patients who report a family

history of melanoma or have funny moles should send them to a dermatologist

first. Don't just start them on drugs [Tysabri]," said Dr.

Mullen, co-author of the letter and a surgical oncologist with Beth Israel

Deaconess Medical

Center, in Boston.

"I can't say it's cause-and-effect definitively

because it's just an observation, but the first patient had had that mole

forever. She took the drug and almost instantaneously the lesion changed,"

added Mullen, who saw both patients.

"We don't know if the two are related right now,"

said O'Looney, vice president of biomedical research at the National

Multiple Sclerosis Society. "There are so many people taking Tysabri, we

should go forward with caution... One should always consult with their doctor

and go over their personal family history and decide what is best."

Tysabri (natalizumab) , a monoclonal antibody that helps

treat autoimmune disorders such as MS and Crohn's disease, has had a clouded

history. It first received U..S.

Food and Drug Administration approval in November 2004, only to be pulled from

the market three months later after several patients in clinical trials

developed a rare but deadly viral infection of the brain called progressive

multifocal leukoencephalopathy.

In June 2006, the FDA allowed the drug back on the market

but with strict conditions governing its use.

Just last month, the FDA approved Tysabri to treat people

with a moderate to severe form of Crohn's disease.

But there is basic science to support Mullen's

observations.

One of the participants in an earlier study of Tysabri had

developed (and subsequently died of) a metastatic melanoma that appeared as

soon as he got his first dose of the drug, Mullen said.

And in a study done before Tysabri received FDA approval,

melanomas in mice that were given the drug had an increased tendency to detach

from the primary tumor and spread.

Tysabri may have a dampening effect on the immune system

that encourages the formation of the potentially deadly skin cancer, the letter

stated.

And now that Tysabri has been approved for people with

Crohn's disease, more people may be at risk, although those with no family

history of melanoma and no moles probably don't need to worry, Mullen said.

"Doctors should ask for a family history of melanoma

and do a quick skin check," he said. "Tysabri isn't the only drug in

our arsenal. You could give the patient something else if you were concerned

about that."

Hugs & Blessings,CrystalLDN_Users Group Owner Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 3 years on LDN with Skip's Pharmacy..... Crystal's MS,TM & LDN Website Crystal's LDN Gift Shop Crystal's LDN Support Group Skip's Compounding Pharmacy LDN Website [low dose naltrexone] Using Tysabri

I started LDN one week after my last Tysabri injection. I saw almost immediate bladder help as well as clearer thinking. About the time for my next Tysabri (which I did not take) I definitely saw improvement in my general MS symptoms (I have had MS for about 20 years). The last few weeks I believe I am seeing the “it will get worse before it gets better”. I’m 6-7 weeks into LDN, and have no reason to stop it. The risks (none) of it over any other MS drug make it the only intelligent choice in my mind. Nothing I’ve read or heard has done anything but strengthen my resolve. I may not get any better, but also not any worse. That’s plenty good for me.

DBoss

[Guest guest]

Chris—

I had been on Tysabri

about 8 months, and felt good about how it was working. However, the latest PML

news, plus learning about LDN, influenced me to change to LDN. My neuro said

he was concerned about me stopping Tysabri because of antibodies I would

develop, lessening the effectiveness of Tysabri later. My (and my husbands) feeling was it didn’t

really matter because I don’t plan on going back on Tysabri, and because

it’s my body and this is what I wanted to do. I’m very fortunate that was a

choice allowed to me by my neuro. Let me know what you decide and how it

works.

DBoss

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of chris noellert

Sent: Monday, September 29, 2008

11:07 AM

To:

low dose naltrexone

Subject: Re: [low dose naltrexone]

Using Tysabri

DBoss,

Thanks for your response. So you really didn't give

Tysabri a try beyond the

one infusion? I've been on it for 6 months and I'm still

not convinced to

take LDN as a stand-alone MS med. My neuro doc is very

reluctant to

give me a prescription for LDN and especially for me to

stop Tysabri

all together.

[low dose naltrexone] Using Tysabri

I started

LDN one week after my last Tysabri injection. I saw almost immediate

bladder help as well as clearer thinking. About the time for my next

Tysabri (which I did not take) I definitely saw improvement in my general MS

symptoms (I have had MS for about 20 years). The last few weeks I believe

I am seeing the “it will get worse before it gets better”.

I’m 6-7 weeks into LDN, and have no reason to stop it. The risks

(none) of it over any other MS drug make it the only intelligent choice in my

mind. Nothing I’ve read or heard has done anything but strengthen

my resolve. I may not get any better, but also not any worse.

That’s plenty good for me.

DBoss

[Guest guest]

Deb,

How long have you been taking LDN?

Do you have specifics about the two new Tysabri/PML

deaths? I'm a bit perturbed about this as well but I'd like to know more about the two new incidents.

[low dose naltrexone] Using Tysabri

I started LDN one week after my last Tysabri injection. I saw almost immediate bladder help as well as clearer thinking. About the time for my next Tysabri (which I did not take) I definitely saw improvement in my general MS symptoms (I have had MS for about 20 years). The last few weeks I believe I am seeing the “it will get worse before it gets better”. I’m 6-7 weeks into LDN, and have no reason to stop it. The risks (none) of it over any other MS drug make it the only intelligent choice in my mind. Nothing I’ve read or heard has done anything but strengthen my resolve. I may not get any better, but also not any worse. That’s plenty good for me.

DBoss

[Guest guest]

Chris—

I’ve been on

LDN about 7 weeks. I’m sorry

if I miscommunicated—the PML cases are, I

believe, in England/Europe, and have not caused death. My neuro

office held immediate open forums concerning the cases, and felt increased

monitoring was called for to protect the patients. At that point I had already started LDN,

and have not wanted or felt I needed to undergo more tests. Searching on-line would undoubtedly give

you all the specifics if you are interested. I certainly understand your concern. Keep me informed of what’s going

on.

Deb

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of chris noellert

Sent: Monday, September 29, 2008

5:00 PM

To:

low dose naltrexone

Subject: Re: [low dose naltrexone]

Using Tysabri

Deb,

How long have you been taking LDN?

Do you have specifics about the two new Tysabri/PML

deaths? I'm a bit perturbed about this as well but I'd

like to know more about the two new incidents.

[low dose naltrexone] Using Tysabri

I started

LDN one week after my last Tysabri injection. I saw almost immediate

bladder help as well as clearer thinking. About the time for my next

Tysabri (which I did not take) I definitely saw improvement in my general MS

symptoms (I have had MS for about 20 years). The last few weeks I believe

I am seeing the “it will get worse before it gets better”.

I’m 6-7 weeks into LDN, and have no reason to stop it. The risks

(none) of it over any other MS drug make it the only intelligent choice in my

mind. Nothing I’ve read or heard has done anything but strengthen

my resolve. I may not get any better, but also not any worse.

That’s plenty good for me.

DBoss

[Guest guest]

Me too. Only LDN. Since Oct 2006. Almost 2 years and counting. So far, so good

In a message dated 9/29/2008 2:07:42 P.M. Eastern Daylight Time, larrygc@... writes:

That is ALL I ever used. I refuse the CRABs, never ever even considered Tysabri.Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

[Guest guest]

Tysabri was taken off the market originally for good reason. Then put back on in a limited distribution - now a few problems again. Pretty much only for relapsing-remitting, I think. In that case - hard to tell is it really is working until a few years of experience. Makes most MSers feel pretty bad, a lot abandon the Rx. It is also VERY EXPENSIVE and unproven.

On the other hand, most on LDN have no progression of the disease, if taken as directed and compounded correctly. I have seen too much divergence and experimentation on this list in regards to diet, other co-treatments, time of dosing, etc. Dr Bihari apparently said that this will not reverse MS, maybe 3 months of damages, but will stop progression. There are no miracle CURES here, IMHO. Just follow the protocol and you will have the best chance - if no help in months, then start playing around! The best advice is to avoid stress as much as possible, and if this means taking anti-depressants, this will help in the long run.

Good luck all.

BC

From: Deb Bosserman <debosserman@...>Subject: RE: [low dose naltrexone] Using Tysabrilow dose naltrexone Date: Monday, September 29, 2008, 8:39 PM

Chris—

I’ve been on LDN about 7 weeks. I’m sorry if I miscommunicated—the PML cases are, I believe, in England/Europe, and have not caused death. My neuro office held immediate open forums concerning the cases, and felt increased monitoring was called for to protect the patients. At that point I had already started LDN, and have not wanted or felt I needed to undergo more tests. Searching on-line would undoubtedly give you all the specifics if you are interested. I certainly understand your concern. Keep me informed of what’s going on.

Deb

From: low dose naltrexone [mailto:lowdosenalt rexone@grou ps.com] On Behalf Of chris noellertSent: Monday, September 29, 2008 5:00 PMlow dose naltrexoneSubject: Re: [low dose naltrexone] Using Tysabri

Deb,

How long have you been taking LDN?

Do you have specifics about the two new Tysabri/PML

deaths? I'm a bit perturbed about this as well but I'd like to know more about the two new incidents.

[low dose naltrexone] Using Tysabri

I started LDN one week after my last Tysabri injection. I saw almost immediate bladder help as well as clearer thinking. About the time for my next Tysabri (which I did not take) I definitely saw improvement in my general MS symptoms (I have had MS for about 20 years). The last few weeks I believe I am seeing the “it will get worse before it gets better”. I’m 6-7 weeks into LDN, and have no reason to stop it. The risks (none) of it over any other MS drug make it the only intelligent choice in my mind. Nothing I’ve read or heard has done anything but strengthen my resolve. I may not get any better, but also not any worse. That’s plenty good for me.

DBoss

[Guest guest]

Deb,

No problem. I just appreciate everyone's honesty as I'm trying to make this decision

[low dose naltrexone] Using Tysabri

I started LDN one week after my last Tysabri injection. I saw almost immediate bladder help as well as clearer thinking. About the time for my next Tysabri (which I did not take) I definitely saw improvement in my general MS symptoms (I have had MS for about 20 years). The last few weeks I believe I am seeing the “it will get worse before it gets better”. I’m 6-7 weeks into LDN, and have no reason to stop it. The risks (none) of it over any other MS drug make it the only intelligent choice in my mind. Nothing I’ve read or heard has done anything but strengthen my resolve. I may not get any better, but also not any worse. That’s plenty good for me.

DBoss

[Guest guest]

BC,

Thanks for your great advice. I really appreciate it!

Cheers~

[low dose naltrexone] Using Tysabri

I started LDN one week after my last Tysabri injection. I saw almost immediate bladder help as well as clearer thinking. About the time for my next Tysabri (which I did not take) I definitely saw improvement in my general MS symptoms (I have had MS for about 20 years). The last few weeks I believe I am seeing the “it will get worse before it gets better”. I’m 6-7 weeks into LDN, and have no reason to stop it. The risks (none) of it over any other MS drug make it the only intelligent choice in my mind. Nothing I’ve read or heard has done anything but strengthen my resolve. I may not get any better, but also not any worse. That’s plenty good for me.

DBoss

[Guest guest]

Congrats!!! That is terrific news! Be well,

-- In low dose naltrexone , " Deb Bosserman "

<debosserman@...> wrote:

>

> I started LDN one week after my last Tysabri injection. I saw

almost

> immediate bladder help as well as clearer thinking. About the

time for my

> next Tysabri (which I did not take) I definitely saw improvement

in my

> general MS symptoms (I have had MS for about 20 years). The last

few weeks

> I believe I am seeing the " it will get worse before it gets

better " . I'm

> 6-7 weeks into LDN, and have no reason to stop it. The risks

(none) of it

> over any other MS drug make it the only intelligent choice in my

mind.

> Nothing I've read or heard has done anything but strengthen my

resolve. I

> may not get any better, but also not any worse. That's plenty

good for me.

>

> DBoss

>

[Guest guest]

My previous response was based on what I've learned in almost 5 years of

being a member of this group as I don't have MS myself, rather something

somewhat similar with no recognised treatment (thank God after reading

about the CRABs for MS!). Most MSers on here seem to use LDN by itself,

many having previously tried using one or more of the CRABs. I believe

Copaxone is the only one of the CRABs that can be used in conjunction

with LDN and some on here do use that combination, apparently successfully.

chris noellert wrote:

> ,

> Yes that's what I've read! My neuro doc is very nervous about me

> using LDN by itself so I'm trying to convince him it's worth a try

> with knowledge I've given him and all the great MS testimonials.

> So is it your understanding that most MSers who use LDN use it

> as a stand-alone MS Med?

[Guest guest]

Holly,

Did you even consider using the MS drug suite

(I don't like the CRAB acronym)before you chose LDN?

Many of you responded "it's your body/disease-if you

want to try the LDN route then YOU should decide".

Although that is very true I guess I just trust my doc's

viewpoint because after all he's the neuro specialist.

Re: [low dose naltrexone] Using Tysabri

Me too. Only LDN. Since Oct 2006. Almost 2 years and counting. So far, so good

In a message dated 9/29/2008 2:07:42 P.M. Eastern Daylight Time, larrygclarrygc (DOT) com writes:

That is ALL I ever used. I refuse the CRABs, never ever even considered Tysabri.

Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

[Guest guest]

Can also call them CARBs if you don't like CRABs.

Then you can say you're on a No CARBs Diet

Re: [low dose naltrexone] Using Tysabri

Me too. Only LDN. Since Oct 2006. Almost 2 years and counting. So far, so good

In a message dated 9/29/2008 2:07:42 P.M. Eastern Daylight Time, larrygclarrygc (DOT) com writes:

That is ALL I ever used. I refuse the CRABs, never ever even considered Tysabri.

Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

[Guest guest]

I have had MS for about 22 years and was told by my Dr. about 11 years ago that I did have MS. At first the Dr. put me on Copaxone, didn't like how I felt, so I stop it. This year I started Copaxone again and still felt horrible, so my Dr. put me on Rebif still felt bad so I started LDN doing better. Put with my left over medication I did a test. I put the Copaxone on a tree, within 2 weeks the tree died. This was a living thing and this medication killed it. Sometimes we don't know the things we are putting into our bodies.

Elena

Re: [low dose naltrexone] Using Tysabri

Me too. Only LDN. Since Oct 2006. Almost 2 years and counting. So far, so good

In a message dated 9/29/2008 2:07:42 P.M. Eastern Daylight Time, larrygclarrygc (DOT) com writes:

That is ALL I ever used. I refuse the CRABs, never ever even considered Tysabri.

Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

[Guest guest]

Hi ,

When I was first diagnosed (2 years ago) I did consider the "usual" drugs. My neuro wanted to put me on Avonex. I did a lot of research into those drugs (Avonex, Betaseron, Copaxone, Rebif) and decided that they weren't for me. My neuro wasn't pleased with my decision, but the research I had done showed me that there were other avenues worth pursuing before going on a drug that in my opinion didn't have very good odds of helping me and had numerous unpleasant side effects. (Again, this is just My opinion for MY situation.)

Based on my research, I decided that LDN seemed to be worth trying. It's not like I can't change my mind and get on Avonex or one of the other drugs at some point in the future if I decide to.

Neurologists have had a lot of training and (probably) a lot of experience in dealing with neurological conditions, and certainly their recommendations shouldn't be dismissed out of hand. But, in my opinion, it's not humanly possible for a doctor see patients AND to keep abreast of all of the latest information and research about one particular condition, especially when it's only one of the many conditions that he/she treats.

I also know that no one is as interested in my health as I am so it's in my best interest to be as informed as possible about my condition and its treatments, and to make the decisions that I feel are best for me. The recommendations of the neuro are part of that decision-making process for me, but he is not my only source of information.

I feel that ultimately I am responsible for my healthcare, and I seek out experts to help me make good decisions. A neuro is one of those experts, and so are other types of healthcare practitioners, as are the people on this and other lists who have "been there, done that" and are willing to share their experiences.

I had such a positive and quick response to LDN (and no negative side effects) that I would (and do!) whole-heartedly recommend that anyone give it a try and see what happens. You can always change your mind if you don't like it.

It's a tough decision, I know. If I can help, please don't hesitate to ask.

In a message dated 9/30/2008 11:52:42 A.M. Eastern Daylight Time, cnoellert@... writes:

Holly,

Did you even consider using the MS drug suite

(I don't like the CRAB acronym)before you chose LDN?

Many of you responded "it's your body/disease-if you

want to try the LDN route then YOU should decide".

Although that is very true I guess I just trust my doc's

viewpoint because after all he's the neuro specialist.

Re: [low dose naltrexone] Using Tysabri

Me too. Only LDN. Since Oct 2006. Almost 2 years and counting. So far, so good

In a message dated 9/29/2008 2:07:42 P.M. Eastern Daylight Time, larrygclarrygc (DOT) com writes:

That is ALL I ever used. I refuse the CRABs, never ever even considered Tysabri.

Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

[Guest guest]

I used Rebif for 3.5 years and developed Raynaud's Syndrome from it.

If someone had told me about LDN years ago I would have been in a much

better position. Our doctors are well-intentioned, no doubt, however

their training has made them very narrow minded in their treatments

and they are more likely to recommend a drug, that may be very toxic,

because the drug companies have done a gazillion studies on it -

however - they won't recommend a drug that is not very toxic because

it is little known amongst their peers.

This was a living thing and this medication killed it. Sometimes we

don't know the things we are putting into our bodies.

>

> Elena

[Guest guest]

My daughter (at age 15) tried Betaseron for 6 months, but felt like

crap. She tried Copaxone for 2 1/2 yrs, but the neuros declared that

it wasn't working well enough. She tried monthly steroid infusions

which made her MS worse and made her feel like crap. The neuros now

want to put her on Tysabri, but given my daughter's history with

orthodox treatments as well as the risks involved with Tysabri, I am

not willing to do this.

She has been on LDN for 4 1/2 months and has just had a 3-day IVIG

treatment. I plan to hold the neuros off until the spring and then

evaluate. I really hope that the LDN gives her a nice clean MRI--the

only language neuros seem to understand.

>

> Holly,

> Did you even consider using the MS drug suite

> (I don't like the CRAB acronym)before you chose LDN?

> Many of you responded  " it's your body/disease-if you

> want to try the LDN route then YOU should decide " .

> Although that is very true I guess I just trust my doc's

> viewpoint because after all he's the neuro specialist.

>

>

>

>

> Re: [low dose naltrexone] Using Tysabri

>

>

>

>

>

>

>

> ________________________________

> Looking for simple solutions to your real-life financial challenges?

Check out WalletPop for the latest news and information, tips and

calculators.

> Me too.  Only LDN.  Since Oct 2006.  Almost 2 years and counting. 

So far, so good

>

>

>

> In a message dated 9/29/2008 2:07:42 P.M. Eastern Daylight Time,

larrygclarrygc (DOT) com writes:

> That is ALL I ever used.  I refuse the CRABs, never ever even

considered Tysabri.

>

[Guest guest]

CARBS it is. What about Tysabri and the T?

Re: [low dose naltrexone] Using Tysabri

Me too. Only LDN. Since Oct 2006. Almost 2 years and counting. So far, so good

In a message dated 9/29/2008 2:07:42 P.M. Eastern Daylight Time, larrygclarrygc (DOT) com writes:

That is ALL I ever used. I refuse the CRABs, never ever even considered Tysabri.

Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

[Guest guest]

,

Thanks for sharing your story about your daughter and the Med history she had.

Still undecided! I just dropped of the book "Up a Creek with a Paddle" (LDN story)

to my neuro doc today and I'm hoping he'll read it so he'll be more informed about the

drug and especially the success stories MS patients have had. I'm going to give him 60

days to come around (one more Tysabri treatment and then the next one will be

pending based on where my heads at at that point).

Sounds like your daughter is responding well in the 4 1/2 months she's been taking LDN.

Besides her not feeling sick (that's quality of life for sure!)from the other med's what other

milestones have you seen with her taking LDN?

Chris

Re: [low dose naltrexone] Using Tysabri> > > > > > > > ____________ _________ _________ __>

Looking for simple solutions to your real-life financial challenges?Check out WalletPop for the latest news and information, tips andcalculators.> Me too. Only LDN. Since Oct 2006. Almost 2 years and counting. So far, so good > > > > In a message dated 9/29/2008 2:07:42 P.M. Eastern Daylight Time,larrygclarrygc (DOT) com writes:> That is ALL I ever used. I refuse the CRABs, never ever evenconsidered Tysabri.>

[Guest guest]

Holly,

Thanks for your response. So far maybe 90% of the LDN MSers

I've heard from all think it's worth a try. What's the worst thing that can happen?

Like you said, I can always go back to Tysabri. My main motivation in

choosing Tysabri is that it has a proven and documented to be it's twice as effective

in slowing progression. You don't do better per se but you don't get worse (supposedly)

and frankly that's the same odds for LDN right? So in reality what's better

about taking Tysabri then? That's the question I'm working with.

I just dropped of the book "Up a Creek with a Paddle" (LDN story) to my neuro doc today and I'm hoping he'll read it so he'll be more informed about the

drug and especially the success stories MS patients have had. I'm going to give him 60

days to come around (one more Tysabri treatment and then the next one will be

pending based on where my heads at at that point). I've also faxed him other info I've

gotten off the Web. So we'll see.

Thanks again!

Re: [low dose naltrexone] Using Tysabri

Me too. Only LDN. Since Oct 2006. Almost 2 years and counting. So far, so good

In a message dated 9/29/2008 2:07:42 P.M. Eastern Daylight Time, larrygclarrygc (DOT) com writes:

That is ALL I ever used. I refuse the CRABs, never ever even considered Tysabri.

Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

[Guest guest]

Also remember that none of the MS drugs are designed for Primary Progressive. The drug companies focus their money/research on Remitting Relapsing as the majority of MSer's have RR. Those of us with PP don't really have to think too long or hard about whether or not we should try CRABS. They just don't work for PP (IMO).

Beverly

[Guest guest]

Chris--as I see it, the difference that should help make your decision is the fact that Tysabri can have side effects and LDN doesn't (little ones, maybe, but nothing dangerous.)

Good luck,

Beverly