Multiple Sclerosis

[Guest guest]

Hi

LDN will be formally addressed at the MS conference in Bundoran, Ireland on Oct 15th. There is a great deal of interest there now.

I have also contacted the Pat Kenny Show with my story, see mail below, and am waiting for a reply. He is popular in Ireland.

All the Best

Dear Mr Kenny,

My name is Bradley. You know my brother DR Phil Boyle from Galway. He went on your show to tell people about his Natural Family Planning success. I live in New Jersey, USA and have a story I would really like the Irish public to hear but am not sure how to go about this. I would appreciate your opinion.

I am 32, my husband is 36. We have 3 little girls aged 5,4 and nearly 3. My husband has had MS for about 10 years. He was officially diagnosed in September 1998 during his first major relapse in London. We moved to New Jersey in January 1999 and in July 1999 he began Avonex therapy which is a standard form of treatment for MS patients. It is an injection taken once a week. At that point he was numb from the waist down but could walk unaided after he taught himself how to walk with the new loss of sensation. He never regained any of the sensation but we proceeded with our lives and were happy with the Avonex in that although he obviously slipped yearly, in that his stamina and ability to walk certain distances kept decreasing, we felt we were doing something and were beating the odds.

Then came January 2002. He just started to slip fast. He became very dependent on a cane whenever he left the house. Then came March 2002, he became dependent on his cane at home. He took steroids in May 2002. They pulled him back a bit for a short while but by August 2002, he could hardly get off the couch, kept falling over and watching him climb the stairs was frightening. I was going to get him a walker for the house and move our bedroom downstairs. He tried steroids but they didn't work. He had turned progressive MS. His neurologist really wanted him to continue on the Avonex or switch to Copaxone (a daily injection) as there was nothing else to offer. Things were grim.

Then I found a Doctor in New York City. This Doctor, DR Bihari claimed that he had 70 patients with MS all in remission, some with huge improvements, taking one pill a night, with no side effects. His first patient is his daughters best friend on this 17 years with no progression. Also this drug was cheap, $35 a month and FDA approved at much higher doses. It all sounded too good to be true. We took the information to the Neurologist and he said that there is no way it could work but agreed that it also could do no harm. To humour us he prescribed it. My husband came off the Avonex and started LDN 4.5mg nightly September 12th 2002. Within six weeks he could walk normally again with his cane. He stopped falling over and we had our lives back. It is over a year now and he is still walking normally with a cane, not falling over, no relapsing and no need for steroids. It still seems too good to be true.

DR Bihari believes that everyone with MS has low endorphin levels. Endorphins regulate the immune system. He claims that LDN (low dose naltrexone) if taken between 9PM and 3AM, triples endorphin production. When this happens the immune system cannot attack itself anymore. MS is an auto immune disorder whereby the immune system attacks the myelin sheath of nerve endings. This causes scarring of the brain and spinal cord. DR Bihari believes that the LDN will only reverse recent scarring, that which occurred within the last three months but he claims that MS will not progress. All of his information is on www.ldninfo.org. It is emotionally dangerous to fully believe this but so far he is right. I cannot help but believe. My husband refuses to believe it will hold his MS at bay forever but also says that if it all goes to pot in the morning he had a good year!

Because of DR Bihari's success with MS he started reaching out to other auto immune disorders. My Uncle is from Donegal flew out here to meet DR Bihari September 2002. My uncle has Parkinsons. He became DR Biharis 4th Parkinsons patient and one year later, he has not progressed. It is shipped to him every three months from Irmats pharmacy in New York City.

I have a friend in Galway whose husband has MS. He is Joyce and lives in Oughterard. He was also on Avonex and getting worse. I told them my story. He went to his neurologist, DR Henessey in Galway. DR Henessey told him to give LDN a try. It is not compounded in Ireland so had to get it on his own. He found DR Lawrence in Swansea who has MS himself and is taking LDN from DR Bihari in New York. is getting his LDN shipped from DR Lawrence. Hi details are ...

DR Bob Lawrence,

Dietry Research Ltd, 10 Heol Gerrig, Treboeth, Swansea SA5 9BP. Tel:01792 417514 Email:bob.lawrence@....

http://www.msrc.co.uk/index.cfm?fuseaction=show & pageid=625

is doing incredibly well and wants to bring this to the national papers and I hope he succeeds. He is on this about 2 months now and his fatigue is practically gone.

There are now over 2000 people here with MS, all in remission, some with more improvements than others. There are many LDN message boards on the internet. The www.ldninfo.org has a link to one, and another is http://www.voy.com/156761/.

I have tried posting my story on the MS Ireland webpage, and many other MS Sites, but it is constantly blocked. I have contacted the MS Societies in Ireland by phone, namely, Aidan in Galway, in Dublin, in Cork, in Letterkenny to name but a few and they are all keenly interested and investigating. Some have MS or a loved one with MS.

It is important that LDN isn't broadcast as a cure or over inflated, as to play on the emotions of people with MS is not right. However it would be wonderful if all with MS had access to this information and made up their own mind as to how to treat their illness. To get the drug approved for MS will cost millions and it is a very cheap drug already approved at much higher doses (300mg) so nobody is going to make money on this and most with MS don't have enough time to wait for this. If it is agreed that the drug cannot do any harm and does not cost an arm and a leg, surely it is worth a try. If it fails, it fails. The medications on the market for MS are very costly and have huge side effects and only promise to slow down progression 35% of the time. There really isn't an effective treatment for MS yet and MS is rampant in Ireland.

It really is food for thought. I would be delighted to hear your opinion and input as how to handle this story.

Yours Sincerely,

Bradley

[Guest guest]

Hi ,

What a great letter. I will be very interested in the reply that

you receive from Pat Kenny.

Wishing you well.

SallyC.

mboylebradley@a... wrote:

Hi

LDN will be formally addressed at the MS conference in Bundoran,

Ireland on

> Oct 15th. There is a great deal of interest there now.

> I have also contacted the Pat Kenny Show with my story, see mail

below, and

> am waiting for a reply. He is popular in Ireland.

>

> All the Best

>

[Guest guest]

,it is great news that LDN is to be formally addressed anywhere - it is a great leap forward. I hope that your story is also featured on the show. Your letter was very well written and could almost be a template for all of us to write to various media outlets around the world by simply substituting our own experiences. Maybe this is the start of something big!

Sue

----- Original Message -----

From: mboylebradley@...

low dose naltrexone

Sent: Friday, October 03, 2003 6:47 PM

Subject: [low dose naltrexone] Fwd: Multiple Sclerosis

Hi LDN will be formally addressed at the MS conference in Bundoran, Ireland on Oct 15th. There is a great deal of interest there now. I have also contacted the Pat Kenny Show with my story, see mail below, and am waiting for a reply. He is popular in Ireland. All the Best

[Guest guest]

I am sure that there is a link to implants- I have had symptoms of MS for two years and have been repeatedly tested but the tests are negative. There are links to all types of autoimmune and neurologigal disorders and implants.

shari

[Guest guest]

--But as far as you are aware is there any specific "disease compensation" award amount that any of the manufacturersare willing to pay out to someone with a diagnosis of M.S?I do know that if it were systemic sclerosis....the payout isclose to $300,000But nothing as far as I can find for M.S.....any thoughts??Kate Gordon

--------- Original Message ---------

DATE: Thu, 8 Apr 2004 20:37:35

From: halvey70@...

Cc: I am sure that there is a link to implants- I have had symptoms of MS for two years and have been repeatedly tested but the tests are negative. There are links to all types of autoimmune and neurologigal disorders and implants.shari

[Guest guest]

I just sent them this email:

----- Original Message ----- From: LarryLDN

healthnews@...

Sent: Monday, August 30, 2004 18:57

Subject: Multiple Sclerosis

Hi there. I just saw the story from Dr. Max Gomez about a cancer drug being used for people with MS. Side effects may include death? Wow.

I have MS. I was diagnosed 7/31/02.

4/17/03 I started taking Low Dose Naltrexone (Naltrexone at 3.0 MG or 4.5 MG). Within a few days my Restless Leg Syndrome went away, and 2 days later my bladder issues went away. I have had many improvements since then.

The problem with LDN? I only pay 9.56 per month supply of 3.0 MG (4.5 is slightly more). I don't even use my insurance, the COPAY would be higher than my full price paid. Side effects include hair and nails growing faster than ever before, sometimes stiff legs (requiring stretching), and eating less.

My MS Specialist Neurologist wrote my prescription, but many people are getting their prescriptions from other doctors. My prescription is filled at a Compounding pharmacy who makes my 3.0 MG pills. Simply one 3.0 MG pill per day, between the hours of 9pm and 3am, and that's it. NO injections, NO IV, no site reactions.

http://www.ldninfo.org is the website for information. LDN is being used by Dr. Bihari in Manhattan for a lot more than just MS. LDN helps Orchestrate the Immune System, the body does the rest. It is being used with many diseases.

LDN should not be confused with Naltrexone's regular use at 50 MG per day.

You can also read my personal journal that I originally wrote 4 months after starting LDN, then a 220 day report and an update on day 389. http://p220.ezboard.com/fldnlow dose naltrexonefrm8.showMessage?topicID=4.topic

I have shared your news story with other people with MS. You may be hearing from others who are taking LDN and doing just as well, if not better, than the patient you had on your program. Perhaps some day you'll have an MS patient taking Low Dose Naltrexone on your program.

Thank you for your time.

[Guest guest]

Hi .

I'm glad to hear that you are willing to give Xolair another go 'round. It

has done absolute wonders for me since I began taking it a little more than

a year ago.

I don't have MS, but my mother and uncle do. I have had some " symptoms " and

my last MRI showed inconsistencies that could have been the beginning of

lesions, so my neurologist is watching me closely for it. Over the years,

my mother has had difficulty with her hearing, eye sight, bladder, digestive

system, muscle spasms, tingling sensations in her extremeties and other odds

and ends for symptoms. I know a great deal about the illness, so feel free

to contact me if you have any questions. Also, there is a wealth of

information about MS on the internet.

I look at it this way. No one wants to have a diagnosis of a permanent

illness, but I'd rather be informed and know that I have something than not

know what I'm up against. Like asthma, there is no " cure " for MS, but there

are treatments that can slow the progression and even help force some

symptoms into a remission.

Keep your chin up and take it from the point of view that knowledge is

always power.

You have my prayers, and I hope the no matter the outcome, you have the

strength and support you need to cope. It's difficult enough to have one

illness, let alone two. I myself have severe asthma, had a short bout with

cervical cancer, and I fight with benign tumors on my feet that recur,

called " granuloma annularae " . I just remind myself of a quote by mother

Theresa. " I know that God will not give me anything I cannot handle " . Of

course she also joked, " sometimes I just wish he didn't trust me so much " .

Know that you have the support for your asthma here, and that you will find

support for MS as well if you are indeed diagnosed with it. has many

MS groups. This group is wonderful, but if you ever feel the need to go off

topic, please do feel free to e-mail me privately. Sometimes we all need to

vent to someone who knows what it's like to have been where we're headed.

Also, it can't hurt to ask your doctor to run a blood test for Lupus. Many

of the symptoms for MS and Lupus are similar and Lupus can be diagnosed by a

blood test. My doctor has tested me for that as well. Can never hurt to

rule things out.

Prayers being said for you!

-------Original Message-------

From: geesiskwe

Date: 07/06/06 23:05:11

Subject: [ ] Multiple Sclerosis

Well hello again.

Despite the hearing loss and two people using Xolair losing their

hearing I am going back on it. My breathing just isn't good and I

don't want the evil candy as ya'll call it. The Singular works but

just doesn't cover 24 hours of relief so I am back on the Xolair. I

hope it works! The folks who lost their hearing were having other

issues which is what the nurse and pharmacist said they were told by

Genentech.

A new glitch in the MRI, Carotid Artery Ultrasound and 15 viles of

blood drawn. I may have M.S. or ? The neurologist wants to do a

Lumbar Puncture aka Spinal Tap. I will see him on Monday to find out

more. His nurse called me to schedual the Spinal. This might be the

cause of the hearing loss although it is a rare symptom of MS it is

a symptom. And around and around I go. The bills are piling up and

we are behind in years of deductables and co-pays.

So my question is does anyone out there have MS or other immune

disease?

Still here,

[Guest guest]

,

I am glad you are back on Xolair. It sounds like more than ever you

need to have your breathing at maximum and your experiences with

evil candy at a minimum! Please let us know how your

tests/diagnoses continue. This is a very supportive group and we

will offer you all the " virtual " help we can.

Addy

--- In , " geesiskwe " <nightsky@...>

wrote:

>

> Well hello again.

>

> Despite the hearing loss and two people using Xolair losing their

> hearing I am going back on it. My breathing just isn't good and I

> don't want the evil candy as ya'll call it. The Singular works but

> just doesn't cover 24 hours of relief so I am back on the Xolair.

I

> hope it works! The folks who lost their hearing were having other

> issues which is what the nurse and pharmacist said they were told

by

> Genentech.

>

> A new glitch in the MRI, Carotid Artery Ultrasound and 15 viles of

> blood drawn. I may have M.S. or ? The neurologist wants to do a

> Lumbar Puncture aka Spinal Tap. I will see him on Monday to find

out

> more. His nurse called me to schedual the Spinal. This might be

the

> cause of the hearing loss although it is a rare symptom of MS it

is

> a symptom. And around and around I go. The bills are piling up and

> we are behind in years of deductables and co-pays.

>

> So my question is does anyone out there have MS or other immune

> disease?

>

> Still here,

>

>

>

[Guest guest]

Hello,

I cannot begin to tell you how much I appreciate this support group. I am

short on the support side. I think my daughters are detaching to prepare

themselves for the worst at the time I need them the most.

Thank you for your kind words and Addy.

I am doing well under the circumstances, One Day at a Time. I go to the

neurologist tomorrow.

A little funny here. All of the bills are creating a survival problem. We

have a 20% deductible. I need new glasses and my bridge in my mouth has

broken loose so.....Considering the cost of all of this.....do I want to

Breath...Hear....Walk....See....or Eat??? It is a sign of the high medical

bill times! Haha! ;o)

Blessings to you all.

[Guest guest]

Multiple Sclerosis patients may soon have a very effective new tool to help track the progression of their disease. Optical coherence tomography (OCT) is a relatively new noninvasive imaging technique that allows eye doctors to easily examine the optic nerve, retina, and macula. A team of researchers at s Hopkins School of Medicine recently tested OCT on 40 MS patients and 15 healthy subjects. Each subject also received an MRI brain scan. The Hopkins team found that OCT revealed brain tissue loss associated with thinner retinal nerve fibers in MS patients, but not healthy patients. Researchers hope that further studies will confirm OCT's effectiveness in determining the progress of MS in individual patients. In a press release, lead author of the study, Calabresi, M.D., said, "Treatments for MS cannot reverse the damage but they can arrest it, so the earlier we get someone on medication the quicker we can stop the disease from causing more harm." He also noted that OCT is significantly less expensive than MRI, and only takes five minutes, while an MRI may take up to an hour. I'll watch for further OCT research and keep you posted. In the meantime, MS patients looking for alternative therapies will find a wealth of information in an HSI report titled Underground Cures: What Your Doctor Won't Tell You About Multiple Sclerosis. Compiled with the input of experts on the HSI Advisory Panel, this report offers details on treatments that have provided invaluable answers for many MS patients. To Your Good Health, www.hsibaltimore.com

[Guest guest]

I use a Prokarin patch for my MS. Although they believe it is Lyme related it really helps me a lot. I cannot do drugs so this has worked for me for the past 8 years. Has anyone done this and done other things with it as well? I know that Lyme patients and MS patients often have hypothalamus functioning problems. For me it manifested itself as thyroid problems but after over ten years of checking many things they discovered that it was the Hypothalamus that was the problem via a test. Prokarin seems to help that. But I do not run into many people that have Lyme that are on this and I was wondering if anyone had any experiences they would like to share. Thanks cathy