No one needs to die from MSA anymore!_2

[Guest guest]

Hi everybody,

I am a relative to Zemann. I think you are all crazy, do you all

want to die in this horrible disease when you don't have to! I have

seen it with my own eyes how he got ill and what he did to get better

again. Now his life is almost normal again he is just suffering from

minor problems that he can control with his medicines. Instead of

complaining you have to pay $ 50, which is very cheap you should be

celebrating and pay more to speed up your health to come back again

to you. I think you behaved like spoilt little children who can't get

enough. Read carefully: YOU ARE NOT GOING TO DIE FROM THIS DISEASE,

IT WILL BE TURNED INTO A HARMLESS DISEASE AS SOON AS YOU ALL AS A

COLLECTIVE HAS PAID ENOUGH TO ERIC ZEMANN TO SAVE HIS HEALTH. AND

FROM THEN ON YOU CAN GET SEVERAL DECADES OF HEALTH AND HAPPINESS IF

YOU WANT TO!!!

AND IF YOU DON'T YOU KNOW WHAT WILL HAPPEN!!!

And don't censure me away from Yahoo too like you did to !

Live long and healthy, Anne Neumann

PS Zemann wants to send you this:

I don't believe this! I am ready to save your lives and health in the

same way as I did on my self and then you prefer to die or let your

neural systems get destroyed far beyond repair. I am telling you the

stop-cure for MSA is here now and it was I who invented/assembled it,

this means you can only get it from me. If you don't want it from me

well maybe you can get it from somebody else who will invent/assemble

it later maybe it will take one year maybe two years maybe three

years who knows. Anyhow by then you could be dead or mute or blind or

deaf or bed-bound for life. I can't see how you can afford that to

happen to you. Can you tell me how you reason? Well I answer your

criticism here.

Frequently asked questions

1. How come you invented/assembled a stop-cure for MSA?

a. I got an early preliminary diagnosis with MSA.

b. I quickly realized how incompetent the Neurologists really are on

this.

c. I realized early how fast I was going down and the seriousness of

my condition.

d. Early I understood science was my only hope to survive.

e. I had access to the Internet.

f. The timing was right (see Appendix 7 the underlined text).

g. I had as it showed in the end one full year to do it.

h. I had huge amounts of luck.

If you add up all this you get a person who is using practically all

his time searching desperately on the Internet and all other sources

he could find for a way to survive very sever MSA with the help of

research and who had a chance to succeed too. Then you add the luck

and bingo there you got it!

From: Pam Bower

Date: Fri Mar 22, 2002 5:21 am

Subject: Cure for MSA?- I don't think so!

,

We were all appalled by your post to the Shy-Drager/ MSA list asking

for $50 to receive the " cure " for MSA. Your post was in extremely

poor taste and (2)meant to exploit people. (3)We know there is NO

SUCH CURE! (For starters we know such a cure would be worth way more

than $50... maybe you should increase your price next time!)

Legitimate (4)medical and scientific researchers are working very

hard to understand the underlying cause of this disorder and when

they find it believe me (5)we will be the first to know about it.

(6)You have been removed from our mailing list and banned from

resubscribing. You've also been reported to Yahoo.com for spamming

practices.

Pam Bower

Moderator, Yahoo Shydrager Group

2. I am a patient who, after my doctors left me to die, has survived

Shy-Dragers syndrome with the help of many of the worlds medical

researchers who were writing on the Internet. One of the medicines I

use to survive has got a problem though: it will practically go out

of the world market within a few months and will stay out of the

market for several years. This medicine is also the medicine I and

anybody who wants to stay alive with MSA can survive the shortest

time without. I have gone bankrupt because of this disease and cannot

pay for the medicine for several years ahead now. This means I have

one chance to stay alive and that is to sell the stop-cure for MSA to

the other patients who also are suffering from the same disease and

at the same time also give them a chance to hoard this medicine to

save their own lives. Therefor I want to make a deal with those of

you who want to survive this so that I can survive it and so we can

keep our health. So I will be happy and you will be happy and

everybody will be happy except for those who had relatives who didn't

make it like Pam Bower Moderator, Yahoo Shydrager Group or

Werre.

3. There is no cure yet for MSA but I have invented/assembled a stop-

cure for MSA. The proof of that is I am still alive and there will be

more proofs for that when you all as MSA patients try the stop-cure

for MSA and can see how it works. My doctors is also appalled I

survived and just wants to await to see what will happened to me,

well I got tiered of their passiveness and me seeing you just die

away, so now I speed up the lifesaving of you all on my own instead.

Also no patient can really really tell there is no stop-cure against

this disease if they don't try it themselves, until then you have to

trust me, it works. I also know you can quite easily find me if you

want to to prosecute me, and I know this and I am not worried because

I know the stop-cure works and I have not lied.

4. Medical and scientific researchers are working very hard and this

gave me the possibility to study their results on the Internet and

they have saved my life while they did so. I would never have

survived this without these researchers and a lot of luck. Thank you

thank you researchers, you who invented the Internet and my luck.

5. You at the Yahoo Shydrager Group will be the first to know about

it and yes you are since I have written about it there first.

6. I have been removed from Yahoo Shydrager Group mailing list and

banned from resubscribing by Pam Bower Moderator, Yahoo Shydrager

Group, who had a relative who didn't make it. Therefore she now only

feels jealousy and bitterness because the stop-cure came so soon

after her relative died, further on her work will get less important

in the long run since MSA will become a relatively harmless disease

because of the stop-cure. What we see here is a jealous and bitter

woman who is fighting for her position and work, the problem is just

that she is having thousands of other people to die unnecessarily

while she is doing this. She is in other words turning herself into a

mass-murderer to save her job! But I am not going to let such people

stop the needing from getting their stop-cure.

From: Werre

Date: Fri Mar 22, 2002 6:14 am

Subject: Re: Cure for MSA?- I don't think so!

Pam,

Unfortunately that type of person will just get a new name from Yahoo

or Excite or someone else and strike again. (7)The person learned

just enough about MSA (although they (8)confuse it with MS also) to

(9)make up a story that sounds plausible (10)to someone desperate for

a cure. Everyone here must realize that there are people who will (11)

lie for profit or even (12)to advance their own ideas on the

internet. It is NEVER justifiable to make up stories and put them out

as SPAM or chain letters, a lie is a lie and it is wrong.

As you say, (13)when a cure is found, this list will know about it

first and there will be 50 emails proclaiming it. If a cure had been

found in 1992, Charlotte would be alive today (even if I had to go to

China to find it).

Take care, Bill Werre

7. I learned not just enough about MSA but it is likely I am the one

who know most of them all since real researchers use most of their

time to do a study on a single molecule or a happening. I used all my

time to study as many research-reports and research-results as

possible to save my life because I had to. I was more time-effective

in other words. I did my studies pretending I was a researcher on the

Internet, talking to different researchers studying articles testing

different things on my self and so on. So I was picking up

information from were ever I could, having only one goal in mind all

the time, to survive, and I did! Also since I am the only one who can

stop the progression of MSA in a person, that means I most be the one

who knows most about MSA. This doesn't mean I know everything about

it, but I have got the best knowledge about it: namely how to stop it.

8. I have not confused it with MS. This is about MSA, but as the very

best researchers of this subject know, MS and MSA are close

neighbors, much more close neighbors than has been made public yet.

9. I did not make up a story, it is all true and there are witnesses

too. I have lived through it and almost died through it too and not

made it up!

10. This is for those desperate for a cure or for those diagnosed

with MSA and who estimate their lives and health to be worth more

than $ 50. If they only think there is a 10 % chance they would

estimate their lives and health being worth more than $ 500. If they

only think there is 1 % chance they would estimate their lives and

health being worth more than $ 5000. To satisfy those desperate for a

cure I have arranged it so that those desperate for a cure can get

the stop-cure faster if they pay more. Remember I myself was also

once one of the desperate ones.

11. I would never lie for profit, but I got one term: I can't commit

suicide while I save other peoples lives, therefor I need to take

charge to give out the stop-cure so I can buy enough of the medicine

I can stay alive the shortest time without. This medicine also soon

will go out of the market since it is so slow to increase to meet the

market demand. When this goes public will a lot of healthy people

start to buy it too, well a lot of healthy people will start to buy

it even if this doesn't go public too within a few months. Therefor

we have both a lack of time and I have a lack of money. The ill also

have a lack of time since if they wait too long will they die or have

their neural system destroyed beyond repair. The whole thing works

like this: if you other patients as a collective pay me enough money

so I can pay for my medicine for several years ahead and thereby save

my life will I save your lives! Then will you be happy, I will be

happy and everybody will be happy!

12. Do I want to advance my own ideas on the Internet? Yes if I can

save 50.000 lives including my own life I will do that, correct!

13. See number 5.

From: Werre

To: shydrager >

Sent: Thursday, March 21, 2002 11:05 PM

Subject: Re: No one needs to die from MSA anymore!

Hi all,

Someone put a SPAM message in very poor taste at best on our list.

It was this evening and listed as:

Re: No one needs to die from MSA anymore! by " ericzemann "

(14) It is a fictitious email address and from an " unknown " source.

Do NOT send money to the address as it is NOT a legitimate claim at

all. The " science " quoted has nothing to do with MSA and (15)it is

pure quackery.

Take care, Bill Werre

14. It is a fictitious email address and from an " unknown " source,

see number 6.

15. It is not pure quackery since quackery means someone is

impersonating to be a physician without being one. I do not

impersonate to be a physician, I write openly I am a patient just

like the rest of you who were sent home to die. The difference is I

didn't let that happen to me, I have managed to do this with the help

of the leading researchers of the planet and their work and these

researchers are definitely not quacksalvers. By the way what are your

physicians who send you home to die and give you no other treatment

than that to reduce your symptoms but not your disease.

And again:

No one needs to die from MSA anymore!

To: whom it may concern.

From: Zemann

The stop-cure for MSA exists now and no one needs to die from MSA

anymore, and this is a promise!

I am most likely the first person ever who has survived MSA and I am

also the inventor/assembler of the stop-cure for MSA, even for the

very most sever form of MSA of which I am suffering.

It is all entirely based on the latest science that I have gathered

from the Internet and other sources during one year when I was

fighting death, that year ended in I won over death because of this

research. I now have got a couple of thousand of research reports on

this subject and nearby subjects. The researchers invented/discovered

the parts of the stop-cure and then I just assembled the parts and

practiced it on myself to invent/assemble the stop-cure and to fight

death since this was my only chance to survive and of course I have

also had an enormous luck. After that was the stop-cure basically

ready, since then I have made a few adjustments to improve it. So now

you have a chance to start to use it, congratulations!

To be able to publish the stop-cure I need to take charge $ 50 for it

because the medicine you can stay alive the shortest time without

(medicine 3) doesn't exist in abundance. If you don't notice a

significant improvement within a year and you were correctly

diagnosed with MSA will I refund your money. When this goes public

also healthy people will start to use it a lot, therefore there will

be a worldwide deficiency for many years of it. This in turn means

it's a life threatening action to me to just make it public. In other

words, since the disease has made me bankrupt and I can't pay for

gathering this medicine for several years ahead I have to take charge

from those of you who also need this medication. The price is not

high; in fact it's just a fraction of the cost of the medicines

themselves. And I also recommend you to hoard the medicine you can

stay alive the shortest time without (medicine 3) yourself too. And

this you also will get the chance to do when you pay to get the e-

mails with the description of the stop-cure for the MSA disease,

instead of I going public. I will also e-mail you some of the most

important research-results so you can see how the details work.

The stop-cure works like this:

0000 hours medicine 1, (details Apx 1 & 2)

0400 hours medicine 1,

0800 hours medicine 1,

1200 hours medicine 1,

1600 hours lunch and medicine 2, (details Apx 3)(details Apx 4)

2000 hours dinner and medicine 2,

2130 hours until 0000 hours medicine 3 (details Apx 5).

The priority-order is:

1 medicine 3,

2 medicine 1 and

3 medicine 2.

In my current situation I would be dead within: possibly 1 week or

guaranteed 1 month without medicine 3, possibly 1,5 months or

guaranteed 3 months without medicine 1. medicine 3 has directly saved

my life. medicine 1 has directly saved my life. medicine 2 has

directly saved my life.

The medicine 3 -cure can never be stopped at all.

The medicine 1-cure can practically never be stopped.

The medicine 2-cure can be stopped in periods if the side effects

gets to bad, one doctor said use 2 weeks and then a stop period, and

on this I need feedback.

My weight is over 100 kg, and my age is between 30 and 50 years old.

The concerning medicine 3 in concentrated form. I mix it with

concerning medicine 3 for 2,5 hours to concerning medicine 3. The

medicine 1 treatment. To wake up at the right times I set 3 alarm

clocks too, I can recommend using digital thermometers that also has

a countdown clock since it rings for about 1 hour without stopping.

Concerning medicine 1 treatment. You need to test to see what's best

for you your self.

Concerning medicine 1 treatment. So what we have to do is to hold out

with the help of this stop-cure until we can get the final cure in

about 5 to 15 years from bone-marrow transplantation (details Apx 6).

This is what I did to survive extremely severe Multiple System

Atrophy and here goes my story.

MSA is a horrible disease that I am still fighting (successfully)

against. Unbelievably I am still alive and I am now in a situation

that looks most like light relapsing remitting Multiple Sclerosis!

But without my medication that gave me back my life and almost all of

my health, I don't have any chance to stay alive or to maintain my

health. Also there is the possibility to give many other patients a

chance to survive/get their health back in the same way I did it if

they like to.

Facts:

Day 1 I got tics in my right eyelid.

Day 103 I got more tics all over my body, at the same time I got

cramps in my lower legs much more often than I used to have from an

old neural injury there. From day 133 I could only walk slowly

otherwise I would get leg cramps.

In day 159 I got a sever concerning medicine 2. I got medicine 2

pills day 164 against it that worked perfectly.

Day 290 I got Orthostatic Hypotention, my leg-cramps disappeared a

few weeks earlier.

Day 294 I got a light attack of cerebral hemorrhage or something

similar.

Day 308 I got weakness of my hands.

Day 310 I got twitchy shaky movements when I tried to move a few

minutes each time I woke up and fell asleep and also I got problems

walking in stairs.

Day 316 I got a new headache, it felt like my head was full of sulfur

acid.

Day 327 I got breathing problems the first time.

Day 333 some fingers had started to move by them selves sideways.

Day 337 7.00 hours I was near death because of dehydration and/or

because my brain was totally infected, swelled and expanded in to the

bone when I woke up. My brain got mashed, smashed, cracked up and

squeezed in several areas. Only one positive thing came out of this I

got back my normal blood pressure. I got several cracks in my brain,

I got dizzy because I could no more see the right angle of

inclination of my surrounding, my surrounding was wagging 45 degrees

in all directions, and all I could do was to lie still on my stomach

to ease my pains in the head. I was over sensitive against punches in

the head and I could not manage any sound other than soft whispering,

so I could in fact not do anything else than just lie there and try

to ease my pains. It felt like I had several knifes pushed in to my

brain and also as if the head was full of sulfur acid, I was dying.

The diagnosis was 100 % shore extremely sever Shy-Dragers syndrome.

Day 341 I read a research result about the effect of medicine 1 and I

had a friend of mine to bye me medicine 1 and I started to eat it. My

fingers stopped to move by them selves, I started to wake up and fall

asleep in a normal fashion. The headache that felt like sulfur acid

disappeared. The power of my hands and legs came back.

Day 346 Noon, I did my hygiene the first time in 1,5 weeks after my

catastrophe and I tried to walk slowly and carefully around my block

to see if I could manage to do that. I was happy over that many of my

symptoms had disappeared.

Day 348 I fund out I can' t stand the bumpy ride of an ordinary car,

I got a terrible headache when my brain-injuries broke up again.

Day 395 I stopped eating medicine 1 I didn't believe it had any

effect.

Day 406 I started eating medicine 1 again after getting back weakness

of my hands and getting back finger-movements. When I started eating

medicine 1 again my finger-problems and hand-weakness disappeared

again.

Day 430 I got back weakness of my hands and finger-movements. I

started knead squash-balls. It hardly helped.

Day 438 I got breathing problems.

Day 439 I got swallowing problems.

Day 440 I got blurred vision.

Day 464 I got a cracked distorted sound in my left ear.

Day 469 the distorted sound disappeared.

Day 475 I found an article on how concerning medicine 3 neural

growth. I started to use medicine 3.

Day 515 I stopped using medicine 3 so that my breathing problems

should be more visible.

Day 518 I ended up at the emergency room having severe breathing

problems. By then I new I would already have been dead if I hadn't

been using concerning medicine 3, therefore I immediately started to

use medicine 3 again.

Day 520 I got a stomach illness lasting 5 days and at the same time I

got normal breathing lasting 9 days.

I have definitely got an autoimmune disease.

Day 536 I ones again get a diagnosis from 3 doctors at the same time.

It is definitely Shy-Dragers syndrome.

Day 546 I have headache, dizziness off and on and also I got pain in

my brain scars again.

Day 601 I got a new kind of breathing problems, I woke up 10 times

every night because my breathing had stopped. When I woke up my

breathing started again then I fell asleep again over and over.

Day 609 I got a relapse of terrible concerning medicine 2. I could

sleep for just 1,5 hours and then I woke up in a terrible concerning

medicine 2. So I got medicine 2 from concerning medicine 2.

Concerning medicine 2 helped; it took away my concerning medicine 2

and my terrible breathing problems at the same time! I had survived!

What an incredible relief to just lay down and be able to breathe in

a normal way!

Day 627 My breathing got completely normal, I had definitely

survived!

Day 636 After that I discussed medicine 1 with my doctor. I changed

my diet so from then I eat medicine 1 every 4 hour during half the

day. Since one medicine 1 is active about 4 hours will this give:

4 times/day * 4 hours = 16 hours/day with active medicine 1 and a

clean brain. My doctor says it is necessary to have medicine 1… are

not active only then can all the medicine 1… brain.

Day 640 relapse of Orthostatic Hypotention, but not as severe as the

first time. Long fast walks helps.

Day 674 I switch to concerning medicine 3 much better.

Day 713 I switch to concerning medicine 3 and doubled the amount to

concerning medicine 3 per day.

Day 747 The doubled amount of concerning medicine 3 seems to have a

lower effect than the half amount of concerning medicine 3 So I

switch to concerning medicine 3 and concerning medicine 3 per day.

Summary

I had: frequent twitches all over for 1 year, very increased lower

leg cramps for 4,5 months, bad concerning medicine 2 1 month + 1

period for about 14 days, Orthostatic Hypotention 1 period for 1,7

months + 1 period for 1 month off and on, a slight attack of cerebral

hemorrhage once, weakness of the hands during 3 periods all together

for 8 months,

Difficulties with movements off and on during 5,5 months, involuntary

finger-movements during1 period of 2 weeks + 1 period of 1,2 months,

severe dehydration/total infection and swelling of my brain once,

seeing the angle of inclination of my surrounding as if it were

waging 45 degrees in different directions for 4,5 months,

hypersensitivity against bumps in the brain for 4,5 months,

difficulties walking 1 period of 4,5 months + 1 period of 5 months,

medium severe to severe breathing problems for 6 months, swallowing

problems for 6 months, blurred eyesight off and on for 8 months, a

twisted broken sound in my left ear for about 5 days 3 times.

Payment:

If you want to get details filled in to be able to use the stop-cure

just pay $ 50 to a friend of mine who will tend to the administration

of it all:

Account: bank: UBS AG swift code: UBSWCHZH80A

clearing number & account number: 0230-382309.40Y

account holder: Torbjoern Arvidsson,

Don't forget to write down your e-mail address in

the message

area on the bank form and/or send me an e-mail with

it.

For every doubling of the price $ 50 you pay you will get the

information 2 weeks earlier!

In other words $ 100 means 2 weeks earlier, $ 200 means 4 weeks

earlier, $ 400 means 6 weeks earlier and so on.

As you understand I can't e-mail you the information until I got

enough money to buy enough medicine 3 and time to buy it too. If you

don't notice a significant improvement or stop of your disease within

a year and you were correctly diagnosed with MSA will I refund your

money.

For e-mail contact: ericzemann(at)hotmail.com

ericzemann(at)kanoodle.com

Homepage: http://ericzemann.1hwy.com/MSA_stop-cure.html

______________________________________________________________________

_____

Appendix 1

concerning medicine 1

Appendix 2

concerning medicine 1

Appendix 3

concerning medicine 2

Appendix 4

concerning medicine 2

Appendix 5

concerning medicine 3

Appendix 6

Kiel Research Group for Auto-Immune Diseases

Reporting the First Treatment Option for Severe Lupus

And Some Other Severe Autoimmune Disorders

Leading Often to Long-Term and Treatment-Free Remission

These Patients Can Be Regarded as Being Probably Cured

International Trial on the Treatment of Severe Systemic Lupus

Erythematosus with Synchronized Plasmaphereses and Pulse-

Cyclophosphamide

" LPSG Trial "

Final Report, Kiel 1998

9. Results of Other Work Groups

(Assessment of Our Own Results)

9.1 The Literature at the Start of the Study:

At the start of the LPSG Study the Literature on the treatment of

severe SLE was as follows:

1. The most effective treatment as demonstrated in controlled studies

was the NIH protocol (Austin et al, 1986). This protocol stipulated

the need-adapted administration of Prd and intravenous pulse-Cy

beginning at 6-week then at 4-week (Steinberg et al., 1991) intervals

for a period of 6 months. The starting dosage was 750 mg/m2, which

could be increased to as much as 1,000 mg/m2. Renal failure requiring

dialysis was rare under this procedure if treatment was begun in the

early stages of lupus nephritis.

2. The only treatment-free remissions in cases of severe (requiring

Cy) SLE were those achieved under of the Kiel protocol (Schröder et

al, 1987).

3. Therapeutic plasmapheresis without additional immunosuppression

was considered to be ineffective (Wei et al, 1983).

4. The only proposal for an alternative treatment for patients

refractive to this therapy was the Kiel protocol (Schröder et al,

1987).

5. These indices were available for measuring the severity of

individual disease manifestations in SLE: the SLAM (Liang et al,

1989), the SLEDAI (Bombardier et al, 1992), and the BILAG (Symmons et

al, 1988).

9.2 Developments During the Course of the Study up to the Present

The following developments were made during the course of the LPSG

Study until today (03/98):

1) In a randomized prospective multi-center study it was shown that

plasmaphereses conferred no additional benefit in lupus nephritis if

used parallel with immunosuppression using Prd and Cy ( et al,

1992). Approaches using the synchronization of plasmaphereses with

the immunosuppression were not examined in this study.

2) The NIH showed that in lupus nephritis multiple methylprednisolone

pulses are not any more effective than the previously described

treatment with Prd and pulse-Cy (Boumpas et al, 1992).

3) The NIH optimized it procedure for lupus nephritis by stipulating

that after attainment of renal remission or after at least 6 Cy

pulses these can be given for a further 2 years at 3-month intervals

in addition to unlimited continuation of Prd treatment. This

procedure was shown to significantly reduce the incidence of

exacerbations versus 6 cycles of pulse-Cy alone (Boumpas et al, 1992).

4) The NIH describes evidence that the combination of pulse-Cy and

pulse-methylprednisolone confers a non-significant tendency to

improved renal function (Gourley et al, 1996).

5) In single case reports or small uncontrolled studies, several

groups describe a positive effect from plasmapheresis in very severe

SLE. Examples are: kson et al, 1994; Fukuda et al, 1994; Marques

et al, 1995; Fessler et al, 1995; Neuwelt et al, 1995; Graninger et

al, 1996; Zamora et al, 1997; Koh et al, 1997; Barile et al, 1997;

and Finkelstein et al, 1997.

6) A few groups describe the results of treatment with the LPSG Study

protocol. Published examples for the use of a procedure resembling

protocol B are: Braun et al, 1991; Dau et al, 1990; Dau et al, 1991;

Braun et al, 1993; Jarrousse et al, 1993; Lombardo et al, 1993; Dau

et al, 1994; Obroniecka et al, 1994; Silva et al, 1994; Hanly et al,

1995; Krumme et al, 1995; Tribl et al, 1995; and Demin et al, 1996.

7) Among the various activity indices used by the SLE, the ‚SLAM`

appears to increasingly gain the upper hand (Liang et al, 1989).

Among other studies, a detailed comparison of the available indices

on the basis of LPSG data (z.B. Corzillius et al, 1993; Corzillius et

al, 1991) shows that the SLAM was at least as accurate as the

competing indices but easier to apply.

8) High-dose intravenous immunoglobulins are – with the participation

of the Kiel group (Schröder et al, 1996, Zeuner et al, 1997, etc.) -

introduced in the treatment of SLE. They represent a viable option if

further suppression of the immune system is not desired or is

contraindicated in cases of SLE. In the further development of the

Kiel protocol they were included as a standard component.

9) Recombined human granulocyte stimulating factor (G-CSF) is used

for the first time in SLE to induce a rapid recovery of

granulopoiesis following high-dose Cy therapy (Schwab et al, 1994

among others) on the one hand, and to treat lupus-associated

neutropenia with simultaneous refractive infection (Euler et al,

1994; Euler et al, 1997) on the other. G-CSF has been incorporated as

a standard component in the Kiel protocol.

10) Treatment-free long-term remission after severe SLE are not

described outside of the interim report of the Kiel protocol (Euler

et al, 1994).

11) Bone marrow transplantation (stem cell transplantation/SCT)

becomes increasingly discussed as a new option for the treatment of

severe autoimmune diseases. One of 2 allogeneic SCTs carried out so

far was performed in Kiel in a case of very severe vasculitis (Euler

et al, 1997). For SLE, a (temporary) treatment-free remission

(following autologous, highly purified SCT) is described in a first

case (Burt et al, 1997).

From the start of the LPSG Study to the present, the scientifically

based treatment of severe SLE has continued to progress in small

steps. Treatment continues to be based on modifications of the NIH

pulse-Cy protocol. High-dose intravenous immunoglobulins and G-CSF

are among several new supplementary options. Bone marrow

transplantation is being followed with great interest and we have

also begun to be active in its application.

Importantly, the ‚mainstream` of scientific opinion continues to

assume that SLE requires life-long therapy and that treatment-free,

long-term remissions cannot be achieved (except possibly by bone

marrow transplantation).

Given this view, it is understandable that publications, state-of-the-

art lectures and lectures at congresses increasingly focus on the

possibilities of reducing the rate of side effects without loss of

effect by reducing the dosage of conventional therapies. Examples of

this trend are: Boumpas et al, 1995; et al, 1996; McCune, 1996

a+b; Pryor et al, 1996; Appel et al, 1997; D'Cruz et al, 1997; -

Suarez et al, 1997; Ponticelli et al, 1997; and Rahman et al, 1997.

In a setting dominated by such expectations, the results of protocol

A (no additional benefit form plasmaphereses) were quickly accepted.

By contrast, the main result of protocol B (treatment-free remissions

are in principle possible) was sometimes met with considerable

resistance. This result can not yet be considered a part of general

scientific knowledge on treatment options in SLE and other severe

autoimmune diseases.

In the development of further options for treating severe autoimmune

diseases it is of decisive importance whether a disease is regarded

as being basically curable (at least for periods lasting years), or

only susceptible to palliative suppression.

It the coming years it will therefore be one of pur central task to

make the novel results of protocol B better known to a skeptical

scientific community, e.g. by publications and further congress

lectures, by posting up-dates and warnings on the of the results of

protocol B, and by increasing the number of patients treated under

this procedure and by further increasing its safety.

An brief evaluation of our own results is given at the beginning of

this report.

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last update of this site: 09/18/99

Appendix 7

http://www.shy-drager.com/reports.htm#priority

Multiple System Atrophy: Now a Major Research Priority

By Dr. on

For many years, only a few physicians were working to discover the

cause and treatment of multiple system atrophy. This changed

perceptibly in the 1990s as Physicians interested in the autonomic

nervous system organized the American Autonomic Society. At the same

time, neurologists interested in Parkinsons disease began taking a

greater interest in MSA. Now for the first time in history there is a

critical mass of physicians and scientists whose major interest is in

understanding and curing this disease.

Extraordinary achievements have recently been made. At first the Shy-

Drager syndrome seemed like a particularly severe form of Parkinsons

disease. Now the clinical differences have begun to emerge. The poor

response to levodopa, the early autonomic involvement, the prominent

urinary tract symptoms, cerebellar involvement, apnea, emotional

volatility and cranial nerve involvement and peripheral neuropathy

are recognized as characteristic of MSA rather than Parkinsons

disease. Differences in physical findings also soon emerged: the cold

hands of the MSA patient.

What is exciting to us now is the identification of significant

functional differences in MSA and Parkinsons disease. For example, we

now understand that in Parkinsons disease, surprisingly, there is

significant involvement of the autonomic nerves in the heart, and

many Parkinsons patients seem to lose almost all of their cardiac

sympathetic nervous system innervation. In MSA, normal levels of

sympathetic innervation of the heart seem to be present. This is

encouraging because it means that the nerves are still there if we

can just learn to control them properly.

The importance of this was made clear by recent studies using the

drug trimethaphan, which transiently shuts down both parasympathetic

and sympathetic activity. It was found that in MSA patients, this

drug greatly altered blood pressure and heart rate, proving that even

though the patients had orthostatic hypotension, they still had

plenty of sympathetic control of their vessels. It is just that this

control could not be marshaled appropriately by the brain to do the

job it needed to do.

Yet, the most exciting new research is focusing on the similarities

emerging in many of the neurodegenerative diseases such as MSA,

Parkinsons disease, and even Alzheimers disease. α-Synuclein has been =

identified in tiny bodies in the brain cells of patients with MSA.

These are called glial cytoplasmic inclusions and while structurally

distinct from the Lewy bodies of Parkinsons disease, nevertheless,

seem to have many of the same components in them. The widespread

presence of this α-synuclein has encouraged some scientists in the

past few months to classify Parkinsons disease and MSA by the new

name of Asynucleinopathies.@ α-Synuclein is a normal component of the =

human genome. Therefore, it obviously has some important purpose

although that purpose is not now understood. Still, when it is

present in such extraordinarily high concentrations in the brain

cells of patients with MSA, that surely must be telling us something

about the cause of MSA. α-Synuclein does not appear to be the culprit =

causing MSA but it may only be one or two steps away. That offers

much hope for understanding MSA. In α-synuclein, we may not yet have

discovered the perpetrator, but at least we have apprehended one of

the accomplices. And we expect to learn a great deal from this

accomplice.

Clearly, we have made greater progress in understanding the cause of

MSA in the past three years than in the previous 100 years. There is

every reason to expect more progress in the future. I have never been

more optimistic about discovery of the cause of MSA than I am in the

millennial year.

Water, An Unexpected Pressor Agent

For many years, medical textbooks have been very clear that sodium

rather than water is the primary dietary determinant of blood

pressure control. When MSA patients began describing improved

functional capacity following water ingestion, they were initially

met with skepticism. However, in a series of investigations during

the past two years, Vanderbilt investigation have documented not only

that the drinking of water can raise blood pressure, but that it

often raises it more than any currently used drug.

On the average, 16 oz of tap water raised blood pressure about 40

mmHg, with a peak effect about a half hour after drinking. The

magnitude of this effect was very surprising and encouraged

subsequent studies in healthy young and healthy elderly volunteer

subjects. Although water had little effect on blood pressure in young

normal subjects, there was a 12 mmHg increase in blood pressure in

older subjects, indicating that recent water ingestion is an

important variable in blood pressure level in even healthy persons.

This will require substantial changes in the way new drugs are

evaluated and in the way hypertension is monitored by physicians in

the future.

Most importantly, this provides a new and more effective means to

treat the blood pressure abnormality in Shy-Drager syndrome. In some

individuals, the careful administration and withholding of eater at

various times during the day has been the only form of treatment of

blood pressure that has been required. Much further work is needed on

this subject, but all physicians need to be aware that water

ingestion is a powerful pressor stimulus in conditions associated

with autonomic impairment and that it can be extremely helpful during

the daytime when patients with to be up. Conversely, it might be

detrimental during the night when patients are supine, and when the

pressor effect might raise blood pressure dangerously high.

Sympathetic Nerves in MSA Remain Functional

Autonomic failure has always been a feature of Shy-Drager syndrome or

multiple system atrophy, at least in terms of how physicians have

thought about the disease. However, at the November 1998 meeting of

the American Autonomic Society, Vanderbilt investigators presented

evidence that sympathetic nerves are still very functional in MSA

patients, even late in the illness. By giving trimethaphan, a drug

which transiently blocked all autonomic function, the investigators

observed a profound fall in blood pressure in MSA, a very unexpected

finding. This finding indicated that while lying down, the blood

pressure in MSA is significantly supported by sympathetic nervous

system activation. However, the brain was not ale to increase the

activation when necessary for upright posture or to reduce it for

alleviation of supine hypertension. The unexpected sympathetic

activity has been termed " constitutive sympathetic activity. "

This is an extremely important observation, because it means that if

artificial control could be exerted over the sympathetic nerves, it

might be possible to normalize the blood pressure in these patients.

These observations will stimulate much fixture work, including the

possible development of a prosthetic device