Just One Question...

[Richard Long]

Does anybody in the entire world REALLY know what Multiple Sclerosis is? Beyond demyelination & a multitude of similarities between people's signs and symptoms?

I'd really like to know, with some degree of certitude what this disease is.

[euphoniaa]

Does anybody in the entire world REALLY know what Multiple Sclerosis is? Beyond demyelination & a multitude of similarities between people's signs and symptoms?

I'd really like to know, with some degree of certitude what this disease is.

As I always tell anyone who asks about the MS Facts, there ARE no "facts" about MS. The most distressing thing about MS to me is that so much of the effort and money and research are going to "treating" IT when they have no clear idea what IT is and whether we even have IT.

[Richard Long]

I would hope that scientists would rename Multiple Sclerosis to something like:

Demyelination of Unknown Etiology

but all the letterheads would have to be redone, so I doubt if it will happen

[ainee]

Richard - I had many neurological symptoms - some similar to MS - I had many tests - but was never given a diagnosis in relation to my symptoms.
I experimented with a simple treatment which I read about as being a successful treatment for symptoms similar to the ones I displayed. The treatment - and a few other things I tried - suppressed my symptoms for a few hours. I found it wasn't what I took, but how it worked in my body which made the difference. I believe the medical researchers and doctors aren't even aware of how this treatment works.

After 18 months of experimentation, research, trial and error, my symptoms started to reverse. It took another year to gain reasonably good health.
Damaged nerves are damaged nerves - no matter how or how long ago, the damage happened. So I believe if I can have better health from a simple treatment, then anyone who displays similar neurological symptoms - including those with MS - should also be able to gain better health - regardless of illness, condition, diagnosis or cause.
ainee.

[agate]

And quite a few experts are of the opinion that MS isn't just one disease but several diseases.

euphoniaa, I agree with you:

The most distressing thing about MS to me is that so much of the effort and money and research are going to "treating" IT when they have no clear idea what IT is and whether we even have IT.

[notasperfectasyou]

I hate this opinion, but I think drug companies are afraid to figure MS out. Think about it. All the major therapies require you to continue using something that's very expensive with no genuine hope that you'll improve. It's very sarcastic, but it's how I view the system. I have several other things that make me even angrier about how the system works, but ......

So, I also think that MS is likely a common outcome with several causes. Demyelination to me is like .... "my skin is bumpy and red". There's several ways it could have gotten like that, but in the case of MS, the medical red herring is that everyone is trying to prove a single cause.

The ease of removing part of the skin and studying it pales in comparison to the complexity of studying how demyelination comes to be. But, I'll just say - if we solved bank robberies like we study MS, most folks would be afraid to go to the bank. I'll quiet up now and try to relax. Ken

[Braindead]

I gradually got to the point where I decided that I was not concerned with what I call "THE ULTIMATE CAUSE OF MS".

Instead I am focused solely on the practical ways to slow the progression of MS. Two years before I even suspected I had MS I bought an issue of Scientific American Sep 93 titled THE IMMUNE SYSTEM. It had some real neat stuff in it. Later in 1996, after being diagnosed with MS I went back an read it again.

There was this really neat section on "HOW MS progresses". AND as a bonus it included a little "road map" on 5 different places in this process that the disease process could be slowed/stopped.

http://home.ix.netcom.com/~jdalton/autoimmunity.pdf (SORRY BIG!! 1.2 MB))

Additional supplements to this article by the same folk has refined this and further clarified in great detail some of this process stuff. The biggest clarification is that MS (the classical kind) is a two step disease process.

http://home.ix.netcom.com/~jdalton/ms-two-stages.pdf (SMALL 88 KB)

I am happy reducing MMP-9s and helping my Avonex have a chance to do it's job. This whole approach is coved extensively here...
.
http://www.msrefugees.proboards82.com/index.cgi?board=others&action=display&thread=3770

My neuroligist wrote an editorial on the MMP-9 approach...

http://home.ix.netcom.com/~jdalton/Editorials-bever-mmp-ms.doc
.
Good luck on finding the "Fountain of Youth", The Holy Grail and "THE ULTIMATE CAUSE OF MS".

I have better, more practical, things to do. I am confident that someone will find it interesting after they too give up the ULTIMATE quest for “THE ULTIMATE CAUSE OF MS”.

Braindead - (AKA jackD)

P.S. Attacking "excess glutamate" is a real good way to reduce 2nd stage MS damage.
.
.
http://home.ix.netcom.com/~jdalton/two%20stage%20MS.jpg

[Richard Long]

I thought I would post on this website what I think happened in my life to cause the demyelination

I am now a senior citizen -- and I think I know my medical history better than anybody else, and because I am using voice dictation, it will take me a very long time to do this -- because voice dictation sometimes does some very funny things & lots of things suddenly disappeare and I have to start all over again

:)

[Annie123]

Hi Richard,

MS screws with my nervous system.

I wasted years trying to understand how.

But I do know why: When my mother was five months pregnant with me, she tried to commit suicide by slitting her wrists and was committed to the local psych ward where she (and I) endured over a dozen Electric Shock Treatments of the "One Flew Over the Cuckoo's Nest" variety (1961).

Best of luck, Richard

~Annie :)

[gonnamakeit]

Hi Richard,

MS screws with my nervous system.

I wasted years trying to understand how.

But I do know why: When my mother was five months pregnant with me, she tried to commit suicide by slitting her wrists and was committed to the local psych ward where she (and I) endured over a dozen Electric Shock Treatments of the "One Flew Over the Cuckoo's Nest" variety (1961).

Best of luck, Richard

~Annie :)

Unbelievable!! Those doctors must have been nuts!

gmi

[MS Bites]

As I always tell anyone who asks about the MS Facts, there ARE no "facts" about MS. The most distressing thing about MS to me is that so much of the effort and money and research are going to "treating" IT when they have no clear idea what IT is and whether we even have IT.


IT is clearly a pain in my a$$. Now if I could only feel my a$$. :D

[Mariel]

I agree that there are several causes. Someone posted a few years back that there are at least chemical and auto-immune causes, maybe infection causes.

My MS may be caused by Porphyria. But doctors thought of MS before Porphyria, because Porph is supposed to be very rare (may not be as rare, and may be increasing in incidence). This would probably be a chemical cause. Porphyrins poison nerves if they occur in excess, and this can be ANY nerve.

I have brain scars, but how did they get there? When? I didn't have an MRI until I was fully engaged in the neurological problems which got me the MS dx, but I had had symptoms for decades prior to that. Ten years or so after MS dx got the Porph dx.

Since at least 3 others in my family, on one line, had MS dx's, and on the same line several were dx'd with Porphyria after death(through family studies by hematologists) there would seem to be a relationship.

So why not just call it Porphyria? Well, some of the symptoms are somewhat unusual in Porph. They do not strike all persons with porph. But since Porph can strike practically anywhere in the body, who knows for sure? My doctors have been 50/50 on this.

Now I have another rare blood disease and I can't treat it, if it gets worse, because of the Porph. The perfect storm. But Im still walking, even if I meander when I do so.

There is no hope in science for me. So I hope in higher things, primarily.

[Mariel]

Annie gives us yet another cause for MS: electrical. Convulsive. What do you call it?

[Richard Long]

Demyelination of Unknown Etiology
Demyelination of Unknown Etiology
Demyelination of Unknown Etiology

[flatfish]

Richard - I had many neurological symptoms - some similar to MS - I had many tests - but was never given a diagnosis in relation to my symptoms.
I experimented with a simple treatment which I read about as being a successful treatment for symptoms similar to the ones I displayed. The treatment - and a few other things I tried - suppressed my symptoms for a few hours. I found it wasn't what I took, but how it worked in my body which made the difference. I believe the medical researchers and doctors aren't even aware of how this treatment works.

After 18 months of experimentation, research, trial and error, my symptoms started to reverse. It took another year to gain reasonably good health.
Damaged nerves are damaged nerves - no matter how or how long ago, the damage happened. So I believe if I can have better health from a simple treatment, then anyone who displays similar neurological symptoms - including those with MS - should also be able to gain better health - regardless of illness, condition, diagnosis or cause.
ainee.




AINEE AND HER SNAKE OIL CURE FOR CJD AND EVERY OTHER DISEASE IN THE WORLD

I thought some of you might want to know that AINEE gets her kicks out of giving false hope to the dying. she literally chases the dead to get their hopes up on a disease that is 100 fatal once clinical, and once clinical, there is NO cure. shame on you ainee. ...

ainee My Story May Give Hope Tue Nov 13, 2007 15:47 203.213.241.49 (XFF: 4.88.39.79, 64.136.48.71)

Our sheep were diagnosed in 2001, with an Encephalopathy - which has similar symptoms - give or take a few and put into human terms - as CJD. The successfull treatment - known prior to 1968 - is Vitamin B1. I wonder why doctors haven't been using this treatment for humans. Our sheep died before they could be treated - but I had similar symptoms - I experimented with VB1 in tablet form - and have reasonably good health now. I've been giving this information to many doctors, researchers, support groups etc., since 2001. I've written about my experience on CJDVoice - and anywhere else I could find, over the past 2 years - in the hope that my experience may help others to have better health. Maybe at last, someone is listening. In August, I emailed a lady whos mother was diagnosed with CJD. The Mum couldn't walk or talk - the doctors could do no more for her. Early in September, she started to have Vitamin B1 treatment - by injections (I don't know the dose rate etc.) A few weeks later, the Mum could walk, talk and eat. The doctors are now diagnosing a type of Encephalopathy - which has similar symptoms to CJD - and is just as deadly - if not treated. I guess it's taken a complete stranger, on the other side of the world, to believe my word. I only emailed brief information about the VB1 dose rate and quantity I took in tablet form, which suppressed my symptoms. What a brave lady - to give her mother a "sheep disease treatment", which doctors have recently told a family, that if it worked, then this treatment would be in the medical journals. Well - perhaps someone ought to put it there. I've contacted 3 other families who have family members diagnosed with CJD - who are keen to try the VB1 treatment. I haven't heard any news yet. I've written on Brain Talk Communities - on the CJD board - in a thresd - CJD - PEM Similar symptoms - maybe similar treatment. This gives info of my research and findings. I believe if doctors don't know about this simple VB1 treatment - then someone should tell them. My Story May Give Hope to those who need it after all, and if that is so, then all my effort will be worthwhile. ainee.

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3586;title=CJD+Vo ice+Discussion+Group

Anonymous Re: MY STORY MAY GIVE HOPE Sun Jul 2, 2006 07:58 68.238.110.55 (XFF: 24.112.162.254)

You are hopeless ainee, and by spreading your lies, you are only giving false hope. I have never seen anybody want cjd as much as you have over the years. You need to go see a shrink. You must get your cookies off by harrassing these famlies of CJD victims. Very very sad.

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3130;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

Anonymous Re: MY STORY MAY GIVE HOPE Sun Jul 2, 2006 09:19 68.238.110.55 (XFF: 24.112.162.254)

Looks like the cjd voice message board has become a board for all the quacks and hypcondriacs out there, instead of a message board for cjd victims and there family. It would seem these fruitcakes would find there own forum. The credibility of this forum is going no where fast, and I think this might just be a few of the quacks soul purpose. All one has to do is go back and read page after page of Ainee's hopelessness. I came to this forum for help for me and my family. I will go elsewhere now.

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3131;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

ainee Re: CJD Sun Jan 27, 2008 15:45 203.213.241.49 (XFF: 4.88.39.79, 64.136.48.71)

Anonymous - why do you ask, if you don't like the answer you know you will get from me? Surely anything is worth trying for those people who doctors can't help - whether you believe it or not. I think if you or a loved one had similar symptoms, you would try it.

I believe the word of 4 families who have loved ones diagnosed with CJD. They believed my word - they treated their loved one with VB1 - and they are responding to the treatment, when the doctors couldn't do any more for them.

I'm not going on this merry-go-round with any Anonymous again, but hope other people who have someone diagnosed with CJD - or similar neurological symptoms - will be interested enough to try this treatment. My story may give hope one day - it seems it has already. ainee.

CJD — Anonymous, Thu Jan 17 17:07 Has there been anyone who has ever got better or overcome CJD?

Re: CJD — ainee, Tue Jan 22 02:02 Anonymous - I just had to answer your letter. Yes, I've at last found 4 people - who've been diagnosed with CJD - and are having better health by taking the Vitamin B1 I suggested. One lady couldn't... more

Re: CJD — Anonymous, Wed Jan 23 08:29 NO ....... NO ONE GETS BETTER WHEN THERE DIGNOSED WITH THIS HORRIFIC DISEASE .......SORRY

Re: CJD — ainee, Sun Jan 27 15:45

Hopeless Ainee — Anonymous, Mon Jan 28 09:58 My story may give hope one day - it seems it has already. Ainee, you and your lies are hopeless Sorry for the false hope and lies Anonymous Ainee knows no one has every been _cured_ of CJD. Why... more

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3618;

Anonymous Hopeless Ainee Mon Jan 28, 2008 09:58 71.248.156.142 (XFF: 4.88.39.79, 64.136.48.71)

My story may give hope one day - it seems it has already.

Ainee, you and your lies are hopeless

Sorry for the false hope and lies Anonymous

Ainee knows no one has every been _cured_ of CJD.

Why she/he is even allowed to continue to tell these folks that there is a cure for CJD from Vitamin B1 on this board is beyond me.

It's been going on too long. .....

you need mental help and a first grade education for

starters, and a lesson in how not to come to a place where

family members are dying and be an idiot. why don't you go

to a funeral and crap in the grave while you are at it?

ainee and delky need to be sealed in the same coffin for a while with a victim of cjd for there continued ignorance and exploit of there buffoonery.

why the moderators of this board put up with there crap is beyond me. the both of them discredit the board, it's purpose and belittles every family and there loved one that are dealing with CJD.

are the moderators even listening to our pleas here, or do they even care?

someone is capable of deleting there crap, and banning them permenantly, if they want to here.

it should have been done long ago. they are disgusting.

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3039;title=CJD%20 %20Voice%20Discussion%20Group

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3121;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3131;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3175;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3170;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

Ainee has thought she/he has had CJD, or wishing it, for some time.

Just another looney tune spreading lies, for whatever reason.

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3041;title=CJD%20 Voice%20Discussion%20Group

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3175;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

Lease this WebApp and get rid of the ads. Anonymous Re: MY STORY MAY GIVE HOPE Thu Jul 13, 2006 06:33 68.238.98.70 (XFF: 24.112.162.254)

delky I agree Sat Feb 18, 2006 09:05 205.188.116.10

Ainee; I agree with anonymus too, whate ever you had it was not CJD, I know you have good intentions to let people knows about what worked for you, ect, but it is not the case, if it were that easy, i am sure there will be a treatment or cure already . don't you think so? I think you are going to high with this "posible treatment" "cure" ect, shou should quitt offering falses hopes, to people who really are dealing with cjd. Sorry! but this is the reallity, .

http://disc.server.com/discussion.cgi?disc=7498;article=2958;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

delky MY STORY MAY GIVE HOPE- Fri Mar 3, 2006 08:18 152.163.100.203

Hi! Ainee; Hope you doing good! I am sorry for what Anon. and I said regardles your "Possible CJD treatments" I didn't meaned to say that what you tryed do'nt work, it may help people with another kinds of neurological illness, but not to people affected with any kind of cjd, I have to tell you that i had experimented with what you told me, and it didn't helped nothing at all! but at least i am glad that i tryed what you said, and i apprecciate your help anyway, regardless the results, I am experimenting now with Ginko bilova, and Grape seed extract, this last one is a potent antioxidant, I still have all this nasty symptoms as well, but i had noticed a litle bit help regardles my memory issues. I have to look for what else can i add to this regimen i am on , since I am a hard head, and had stopped all the medications that my dr. gave me cause I am gaining to much weight (170 pounds) now when i was 130 before all this mess come up with me. So i am experimenting myself with natural alternatives, my dr. is going to be mad with me!!! but i need to do something i just cannot be gaining weight, and he seems not care about. My husband is angry with this dr. and told me to look for another dr. I know is not is fault althought, it's just whate ever i had that is difficult to find out. Any way i will keep you all in touch, and please excusa me for what i said , it not was my intentions to make you feel bad, go ahead with your research, if you believe it, and if this worked for ;you!!! but consider that whate ever you had it was not any kind of cjd.

God bless you... Delky.

http://disc.server.com/discussion.cgi?disc=7498;article=2972;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

ainee MY STORY MAY GIVE HOPE - possible treatment Thu Feb 16, 2006 20:50 203.220.147.208

Genetic. My posting on the 15th November 2005, about the treatment which suppressed and reversed the horric symptoms I suffered - which are symptoms similar to CJD - could just be a preventative treatment for those who may be at risk of getting CJD, in any shape or form, as well as many other neurological illnesses.

My information is not an educated guess. I read an artical about PEM, which has symptoms similar to those I was suffering. I experimented with the treatment, trial and error over time, brought about my recovery and survival.

VB1 (NOT to be taken if on pain relief), Vitamin C tablet or Vitamin C powder (EXTOR C)- were the simple treatments that I experimented with, and along with other ingredients - which probably haven't been scientifically tested for medicinal purposes - saved my life. I still take MOT - 3 times a day, most of the time.

While this treatment probably haven't got rid of the toxin and injury which I believe caused my symptoms, I believe it has suppressed and reversed most of the horrific damage done to my nervous system, which the toxin and/or injury caused. I believe it dosen't matter what the illness is called or what has caused it, MOT will give better circulation, thus more oxygen to every part of the body, including the brain.

Apparently, there is a barrier between the body and the brain, which prevents drugs getting to the brain. MOT increases the temprature of the body, increases the breathing, increases the circulation, increases the oxygen content in the whole body, and I believe gets more oxygen to the brain. I was suffering with slight seizures, mini blackouts, etc. - these symptoms have been reversed and I don't suffer with them anymore. I do suffer with extreme tiredness at times and occasionally feel a bit dizzy.

I don't mind taking my treatments 3 times a day. If I miss a dose or take more doses per day, it doesn't matter. If I miss too many doses on a cold or hot day, or at night time, when there isn't enough oxygen in the atmosphere, I get more facial grimaces and leg jumps - a sure sign, I have found, that I'm not breathing in enough oxygen.

I posted information on the 7th and 9th of February, about the detection and treatment for PEM, which has similar symptoms to BSE - and these symptoms - give or take a few - are similar to CJD and many other neurological illnesses.

I pray that my information will help those who may need it now and in the future. God Bless ainee.

http://disc.server.com/discussion.cgi?disc=7498;article=2942;title=CJD%20 Voice%20Discussion%20Group;pagemark=60

ainee MY STORY MAY GIVE HOPE - possible treatment Fri Feb 17, 2006 13:37 203.221.242.179

G'day Genetic, I've read of medical experimentation using high doses of vitamin C. The trouble is, I believe why the results weren't positive, is that it wasn't taken at least 3 times a day for the continued benifit. When I was very ill, I experimented with up to 5,000 mg of vitamin C. Even at a high dose, I had to take it at least 3 (sometimes 4) times a day to stop the horrific cramps, spasms, twitches etc.

The ill people vitamin C was experimented on, were probably also on other medication and wouldn't be able to feel any difference - and a test tube, or the mice, wouldn't be able to tell if it suppressed the symptoms or not.

I've also read many cases, where high doses of vitamin C taken several times a day, helped suppress pain. It also helped many ill people with all sorts of ill health, gain better health - and stay well longer with it's continued use. As in my case, it took 18 months of experimentation with many different treatments, before my symptoms started to receed and another year to get as well as I am now.

I believe the information, the diagnosis and treatment for a cow and sheep with PEM - 7th and 9th Feb. on CJD Voice Message Board, also about misshapened prion on the 2nd February, may go a long way in finding a treatment for CJD and BSE - which has similar symptoms to PEM.

I believe it doesn't matter what illness, or what nerves are affected, it is the continued risen temprature, the continued increase of oxygen, over an extended period of time, that will reverse these symptoms. It didn't matter how much or what treatment I took, my body's temprature only rose to a certain point - very uncomfortable at times with heavy sweating, but as my symptoms reduced, I knew that it was my only chance of survival.

Many years ago apparently, medical research using vitamin C, wasn't continued because it is non toxic. I guess no-one expected a little old grannie from the Aussie bush to get similar symptoms to her sheep with PEM, take the treatment for PEM, and therefore, survive to tell the story - and I believe my story may give hope. God Bless ainee.

http://disc.server.com/discussion.cgi?disc=7498;article=2955;title=CJD%20 Voice%20Discussion%20Group;pagemark=60

ainee MY STORY MAY GIVE HOPE Thu Feb 9, 2006 14:10 203.220.146.81

Thank you CJD Voice, for the space you have allowed me to tell my story.

I realized yesterday, that the following info from the Hungerfords Diseases of Livestock book, printed by Angus and Robertson, might be a clue to treat BSE in cattle - and if it is, then it may well be the treatment to treat CJD - and many other neurological illnesses in humans and animals.

Treatment for a cow with PEM, Polioencephalomalacia - or CN, Cerebrocortical Necrosis, which has similar neurological symptoms to BSE and CJD.

'Thiamine in doses of 1 gm intravenously per 1,000 lb body weight, followed by i/m administration appears beneficial.' Also - 'When some members of a group of animals started to show symptoms, the preventive administration of thiamine may have merited.'

A cow showing signs of PEM 4 weeks after calving, was treated with thiamine and a vet 'found that injection of 1.6 G thiamine led to recovery within 48 hours.

I know we are quite different to cattle - and sheep - but our nervous systems would be similar and react to toxins in the same way. I believe, through my research, that cattle may eat grain or plants that can be very toxic at certain times of the year, and develop toxic symptoms, perhaps weeks later - and in humans, it could be years later.

I also believe that it doesn't matter what has caused the neurological symptoms in man or beast, or what name it is given, the VB1 treatment (and the MOT treatment which helped me survive from horrific neurological symptoms similar to CJD,) could be a treatment, as there doesn't seem to be any other treatment at the moment to treat BSE - or CJD.

I pray that this info will get to the people who can help to make a difference. If anyone knows of a contact who is involved in research or treatment of BSE, CJD or any other neurological illness - please pass this information on - you never know, it might be the information that will make a diference. Thank you, God Bless and have a nice day. ainee.

http://disc.server.com/discussion.cgi?disc=7498;article=2930;title=CJD%20 Voice%20Discussion%20Group;pagemark=60

ainee MY STORY MAY GIVE HOPE Tue Nov 15, 2005 13:38 203.220.146.233

Perhaps my story will give hope to those who are ill. I discovered that my horrific symptoms were similar to CJD.I took 250 mgs of Vitamin B1, 3 or 4 times a day. My symptoms subsided a short time after each dose. After much experimentation, I rose the dose to 5oo mgs. 3 times a day.

I also discovered that 3000 mgs. Vitamin C - or one teaspoon of Vitamin C powder - 3 times a day, also helped to reverse the symptoms, which were similar to toxin symptoms, eg. chemicals. (I could choose either VB1, Vitamin C tablets or Vitamin C powder, any ONE of these 3 times a day - a different on at each dose if I wished.)

A lesser dose didn't work as well. I had to take the right amount for my weight - average adult. If I were a frail person, half the above dose rates, 3 times a day would have been sufficiant. I experimented with many other treatments. I was still very ill. It took 18 months before my symptoms started to reverse and another year to get as well as I am now, reasonably well most of the time.

I believe that toxin and/or injury that I was exposed to years ago, could have been the cause of my illness. I was never tested for CJD. I am not a medical person, just someone who has survived a living hell. This treatment is not a cure, but could give better health and hope to those who are ill with similar symptoms.

I would advise anyone NOT to change their medication without asking their doctor.

http://disc.server.com/discussion.cgi?disc=7498;article=2766;title=CJD%20 Voice%20Discussion%20Group;pagemark=100

Sun Oct 23, 2005 05:35 66.47.111.35

Delky, you have children. You say you would do anything for them.. prove that for their sake.

If you are afraid you have CJD (and I agree with Tim, from what you describe it sounds very unlikely) GO TOA DOCTOR THAT KNOWS THIS DISEASE. Stop jerking around with the same doctors. It sounds more like you have developed an obsession with this disease that is preventing you from getting proper help and very likely from taking proper care of your children. There are many neurological diseases, some fatal some not.. some that are very similiar to CJD in their symptoms. Why is it that you think you have riveted your attention on CJD? This is an totally untreatable and uncurable disease. No hope. You aare obessing on this and avoiding help.. YOur children are almost vertainly being harmed by this. As are you. Why?

http://disc.server.com/discussion.cgi?disc=7498;article=2733;title=CJD%20 Voice%20Discussion%20Group;pagemark=120

Delky Ultrasound??? Thu Mar 23, 2006 12:30 64.12.116.133

Hi! Every one! Hope you guys are doing good! This is me Delky, writting again to update you a litle bit of what is going on with my health issues, and to ask some questions too. I went to saw my family dr. last Feb. 10 and for that time he ordered a urine specimen, which one came back showing a lot of blood in my urine, i wasn't with my period, so he put me on antibiotic for that, so after 3 weeks taking antibiotics, i just went to see my dr. again this past tuesday March 21, and he took again another urine specimen to make sure it was okey, but again it come back with a lot of blood in my urine and he also told me there was a lot of white cells, which mean "infection" so he put me in antibiotic again, but he also ordered a bladder ultrasound which one i had done yesterday at the hospital, and i just received the results today it came back "NORMAL" but anyway he already set up a appointment for me to see a Urology specialyst, for april 4th. But mrs. Teresa my dr. nurse, had told me that they still not figure it out why i have this blood in my urine, cause the ultrasound say it is normal? So it is weird? not, Since i had been suspecting of having VCJD for a couples of years ago, and nothing had been found so far, i mean all the differents tests, ect, had became just normal, and there is not any explanation so far for the cause of all my symptoms, Could it be possible that in this urine test the "white cells" that were found and the blood, may be actually vcjd cells or it means the vcjd infection? whate ever i don't know how call it, in other words could it be a sign of vcjd actually showing in the urine??? Does somebody there know if Vcjd shows in the urine any specific cell or something??? sorry for embarrased questions, but i am very worry about all this. I have a appointment coming next monday with my neurology i hope she can do some other test, i will ask for a MRI,. Well guys thanks already for listening and for any imput, i apprecciate so much your help! Tin, are you there? if you are reading this, please help me out? i am getting frustrated at all this mystery with me. Thanks so much!!! \God bless every one of you there !

Love, Delky.

http://disc.server.com/discussion.cgi?disc=7498;article=2991;title=CJD%20 Voice%20Discussion%20Group;pagemark=20

lb re: weight issues Fri Jan 27, 2006 08:49 67.191.129.155

Delky has been posting here all this time. It seems apparent to me also that CJD is not the issue. I have fruitlessly encouraged her to see other help. Sadly, I think she has developed an obsessive disordered that has this as its focus. I feel for her and her family and hope she will see the light and get some help that she clearly needs.

http://disc.server.com/discussion.cgi?disc=7498;article=2897;title=CJD%20 Voice%20Discussion%20Group;pagemark=80

Delky Answers please!!! Mon Apr 10, 2006 09:11 64.12.116.198

Hi! there! why nobody give me a idea regardles my previous question? even the CJD family members affected by CJD, didn't had this type of problem, or did they? could somebody PLEASE!!! help me out with this question?. In advance thanks. I have exactly 29 months ill since symptoms oncet, and I still here wondering if i could have VCJD, Or Not? since anything point to anything else, not diagnostic, nothing, and every single test done so far come back NORMAL!!! And even worse and more frustrating for me that my neurology had said that i need to go to where they need treat the root of the problem with me, she said she will do a appointment for me to go to the Mental Health Center! Oh! my God could somebody believe it? it is more easy for her to refer me there than deal with my symptoms and run tests, or whatever neccessary to find out what it could be my problem? In other words she don't believe my problem is physical and real, i have the idea that she think it may be

Lease this WebApp and get rid of the ads. look... — visionoftruth, Sun Jul 2 21:30 visionoftruth look... Wed Jun 28, 2006 01:47 24.145.242.102 LLMD is a lyme disease specialist. see lymenet (search google)... Western Blot is a blood test that looks for antibodies that the body... more

Re: look... — ainee, Sun Jul 2 23:19 Thank you visionoftruth for your info. - I've read where many people have similar neurological symptoms and have had many different illnesses and conditions diagnosed. If you go to 10 doctors, you'd... more so interesting... — Delky, Sun Jul 2 22:54 Hi! Visionoftruth! i had to re post here your previous message to me from June 28/2006. I hope you not mind it! Well the information you gave me is huge and very interesting. What did you said about... more

Lab website — Delky, Tue Jul 4 07:55 Hi! Ainee; can you post again the lab website, i can not find the post where you wrotte this! please!! Thanks a lot. Delky

Re: Lab website — ainee, Tue Jul 4 08:12 G'day Delky, The web sites (on June 30th) are www.thedoctorsdoctor.com and www.labtestsonline.org I hope they can explain about your MRI's. God Bless. ainee.

Re: Lab website — Delky, Tue Jul 4 21:53 Hi! Ainee; hope you doing good girl! I will search for inf. regardling my MRI, at those web sites, Thannks soooo much!!! God bless you... Delky. Re: so interesting... — Anonymous, Mon Jul 3 07:35 Ainee and Delky, I have also heard if you rub your stomach and pat your head at the same time, turn and spin 3 times while singing yankee-doodle-dandy, that also cures cjd. why don't you try it. Move ... more

Re: so interesting... — Anonymous, Tue Jul 11 11:06 See I didn't write that! Too ANONYMOUS — CAROL, Tue Jul 4 12:36 Anonymous , If you have had a family member suffer or die from C.J.D. I am truely sorry for your loss. But I am beginning to believe that you look forward to seeing what Ainee and Delky have writen.... more

Re: Too ANONYMOUS — Anonymous, Tue Jul 11 10:55 I am rubber and you are glue... thanks for your support Carol!!! — Delky, Tue Jul 4 21:45 Carol; I think you doing right in telling this person "anonymous" what he or she really is, he or she seems not to understand what respect to somebody else means! He had really got in my nerves too,... more

Re: thanks for your support Carol!!! — Anonymous, Tue Jul 11 11:02 what do you have to do with CJD? NADA. I am so glad you have chosen to become our representitive. You should learn to spell though. Try hypochondriacs.com. ASSO (whatever that is) BTW all you bored... more

Re: thanks for your support Carol!!! — Delky, Fri Jul 14 19:57 What do you know about Carol with CJD,Ainee, and Me...NADA neither! Before you ask someone to learn to speell, you should look at your own first, you should learn to respect others persons too. I had ... more About ny Husband & C.J.D. — Carol, Wed Jul 5 09:10 DELKY, As you know, my husband was having numorus problems when we began our search for answers as to what was wrong with him. He was seen by many doctors, and had many test done over along period of ... more

Re: About ny Husband & C.J.D. — Anonymous, Tue Jul 11 11:05 Actually a brain biopsy can diagnose CJD. See doctors at Emory and God Bless. Your Husband — Lee, Thu Jul 6 04:36 You have my prayers and sympathy regarding the illness of your husband and the anguish this is causing you. My family went through this with my Mother and it is a painful process. We were fortunate... more

Re: Your Husband — Anonymous, Tue Jul 11 11:08 Very helpful and informative post. Very giving of you to offer so much knowledge of a real life CJD situation. We can all learn from your generosity and thoughtfulness. Well not all... Re: About ny Husband & C.J.D. — ainee, Wed Jul 5 15:31 Carol - my story may give your husband hope. Would he have the courage to take 250mgs Viatmin B1, 3 or 4 times a day? I experimented with it. That dose suppressed my symptoms, within a short time... more

Re: About ny Husband & C.J.D. — Anonymous, Tue Jul 11 11:09 Nope, no help at all... sadly. Nothing here about CJD. RE: About my husband and CJD — Anonymous, Mon Jul 10 11:04 We are told that my father in law possbily has sporadic CJD. in 8 weeks he has gone from a brillant 65 year old man who is an Avid reader to a guy who can't read, has tremors, memory loss and VERY... more

RE: About my husband and CJD — Anonymous, Tue Jul 11 11:12 Get to a good doctor. Whatever it is may be reversable. Don't assume CJD. I have heard of medicines that can legitimately reverse some common old age syndroms. CJD is rapid but you need an expert... more Your Husband — Lee, Tue Jul 11 03:38 I am not a doctor. I studied this a lot while my mother was sick. It really depends. Some forms of sCJD can go very fast. Others can take quite a bit longer. I guess part of how I would regard this... more MY STORY MAY GIVE HOPE — ainee, Tue Jul 11 02:53 Michelle - it is NEVER too late to try VB1. I was having seizure like episodes, spasms, horrific cramps, grunting, loads of involuntary movements, I felt about 3%, and I also felt void of oxygen in... more

Re: MY STORY MAY GIVE HOPE — Anonymous, Tue Jul 11 11:12 No hope here! Nothing about CJD here! Pentosan — Mel, Mon Jul 10 21:41 Saw a report this weekend on a young 21 year old man who has been treated by injecting Pentosan directly into the brain. He is on the way to recovery, still has a long way to go. His name is Jonathan ... more

Re: Pentosan — Anonymous, Wed Jul 12 10:27 Findings of MRC monitoring study of PPS (does not stop vCJD) Wed Jul 12, 2006 12:18 68.238.98.70 12 Jul: Pentosan Polysulphate & CJD Findings of MRC monitoring study of Pentosan Polysulphate... more Thanks for valuable tip! — Helpful not harmful, Tue Jul 11 11:18 Q&A: vCJD treatment An experimental vCJD drug may have succeeded in slowing the advance of the disease in one teenage patient. Jonathan Simms has still been left heavily disabled by his illness - but ... more

MY STORY MAY GIVE HOPE — ainee, Tue Jul 11 15:14 About December 2002, I saw a story on Australian TV about Jonathon Simms. Between Christmas 2002 and the New Year, I rang the TV station, and sent my research information about Vitamin B1. I rang... more Thanks Ainee — Carol, Wed Jul 5 16:16 Hi Ainee, First of all, it's very nice to meet you. And to answer your question, I think at this point he would be willing to try anything. He takes so many pills now, whats one more ! I'll get some... more

Re: Thanks Ainee — ainee, Thu Jul 6 05:08 It's nice to meet you to Carol. How long have you been reading/posting on cjdvoice? I started to post MY STORY MAY GIVE HOPE on 15th November 2005. I'm in Australia - and kgs. is for weight in... more

hmmm god bless you!!! LOL (nm) — Anonymous, Wed Jul 26 15:01 Re: thanks for your support Carol!!! — ainee, Tue Jul 4 22:46 Thanks for your support and understanding girls - and also to anyone else out there who reads our postings and offers silent support and doesn't criticise our efforts. But some just don't seem to get ... more

Ainee, hypochondriacs, and quacks — Anonymous, Wed Jul 12 14:20 Ainee, What you are posting is pure cr@p at it's most rancid form. What you spew out is totally false, and to say or even insinuate that your snake oil MOT/B1 will cure CJD, giving these poor... more

MY STORY MAY GIVE HOPE — ainee, Thu Jul 13 02:34 Look Anontmous - I've survived horrific symptoms similar to CJD. I have never said in my postings, that MOT is a cure for CJD - or anything else. MOT - is the treatment I experimented with, to... more

Re: MY STORY MAY GIVE HOPE — Anonymous, Thu Jul 27 13:53 do you take credit cards?

Re: MY STORY MAY GIVE HOPE — ainee, Mon Jul 31 14:37 No, I don't take credit cards - this information is free of charge - maybe someone - somewhere - will benifit from my research one day, and gain better health like I now enjoy, and that will be like... more Re: MY STORY MAY GIVE HOPE — Anonymous, Thu Jul 13 06:33

AINEE PREYING ON THE DEAD AND DYING

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3175;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

Anonymous Ainee, hypochondriacs, and quacks Wed Jul 12, 2006 14:20 68.238.98.70 (XFF: 24.112.162.254)

Ainee,

What you are posting is pure cr@p at it's most rancid form. What you spew out is totally false, and to say or even insinuate that your snake oil MOT/B1 will cure CJD, giving these poor families dealing with a dying loved one and then you lying to them, well, I hope there is a place in hell for you. You are a sick puppy, and why the moderator of this board has let you and the other hypochondriac stay here, knowing what you repeat over and over again, page and page, knowing it is false, is beyond me. It's like they want the board to become a chat room for every hypochondriac, quack, and or ('industry'?) out there, and it's very very hurtful to the victims and there families of TSE. Hypochondriacs and other quacks that have nothing to do with CJD and continue to disrupt, should not be here. To be allowed to stay here and continue to give false hope with snake oil remedies that do not work, are only hurting CJD victims and there families ***

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3170;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

Anonymous Re: so interesting... Mon Jul 3, 2006 07:35 68.238.110.55 (XFF: 24.112.162.254)

Ainee and Delky, I have also heard if you rub your stomach and pat your head at the same time, turn and spin 3 times while singing yankee-doodle-dandy, that also cures cjd. why don't you try it. Move all furniture from around you before trying. works as good as your mot.

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3135;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

Anonymous Re: MY STORY MAY GIVE HOPE Thu Jul 13, 2006 06:33 68.238.98.70 (XFF: 24.112.162.254)

delky I agree Sat Feb 18, 2006 09:05 205.188.116.10

Ainee; I agree with anonymus too, whate ever you had it was not CJD, I know you have good intentions to let people knows about what worked for you, ect, but it is not the case, if it were that easy, i am sure there will be a treatment or cure already . don't you think so? I think you are going to high with this "posible treatment" "cure" ect, shou should quitt offering falses hopes, to people who really are dealing with cjd. Sorry! but this is the reallity, .

http://disc.server.com/discussion.cgi?disc=7498;article=2958;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3175;title=CJD%20 Voice%20Discussion%20Group;pagemark=40

Anonymous BAN AINEE AND DELKY FROM CJD VOICE MESSAGE BOARD Tue May 2, 2006 09:31 71.248.145.247 (XFF: 24.112.162.254)

you need mental help and a first grade education for

starters, and a lesson in how not to come to a place where

family members are dying and be an idiot. why don't you go

to a funeral and crap in the grave while you are at it?

ainee and delky need to be sealed in the same coffin for a while with a victim of cjd for there continued ignorance and exploit of there buffoonery.

why the moderators of this board put up with there crap is beyond me. the both of them discredit the board, it's purpose and belittles every family and there loved one that are dealing with CJD.

are the moderators even listening to our pleas here, or do they even care?

someone is capable of deleting there crap, and banning them permenantly, if they want to here.

it should have been done long ago. they are disgusting.

http://disc.yourwebapps.com/discussion.cgi?disc=7498;article=3039;title=CJD%20 %20Voice%20Discussion%20Group

[newlyb12def]

Most people can identify these amazingly simple cures as snake oil, but people become blind with desperation.
Thank you for posting this background info, Flatfish.