RE: No one needs to die from MSA anymore!_2

April 8, 2002

Who diagnosed you? Name of doctor? Your symptoms are so different from most.....just curious. Why doesn't a pharamaceutical company purchase your "cure" for millions of dollars? Why go after the "little" stuff?

April 8, 2002

Who diagnosed you? Name of doctor? Your symptoms are so different from most.....just curious. Why doesn't a pharamaceutical company purchase your "cure" for millions of dollars? Why go after the "little" stuff?

April 8, 2002

Hi all,

We have been SPAMed again. This time they use Dr. on's name and

research, forgetting that we on the list and and anesthesiologist in Australia

were aware of the hydration thing three years ago. They are taking notes on old

messages and quoting Pam and my notes to the list as proof they discovered

this. Where have they been the past years while Pam and I were here. If you

pay the $50 I doubt that you will ever see a thing - they want you to send it to

a Swiss bank so they do not have to worry about U.S. fraud complaints. They

state that Pam cut them off, but I sent them an email within minutes of it

appearing on the list, and it bounced as undeliverable, hours before Pam saw it.

This statement tells it all " Anyhow by then you could be dead or mute or blind

or deaf or bed-bound for life. " They do not know the symptoms and are guessing.

Beware of quacks.

Bill Werre

======================================================

anneneumann2002 wrote:

> 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.

>

> C:\WEBSHARE\WWWROOT\kielaid\default1.htm -

> topC:\WEBSHARE\WWWROOT\kielaid\default1.htm - top

> 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

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

April 8, 2002

!!! SPAM ALERT !!!

Pam or Bill, we need to see what we can do to stop this.

Folks, if it sounds too good to be true, it is! (Well, except for the

swindler that though up this scheme. Can you say " con-man " ? When someone

offers a cure for just a little money, but the cure will happen

faster/better if you just pay more money, a swindler is in action. The only

thing cured will be the emptiness of their wallets. But it magnifies the

emptiness of their souls!

Folks, DO NOT WASTE YOUR PRECIOUS MONEY ON THIS !!

Let me quote:

> Read carefully ...

Whoopsie! I did read carefully. And here is the excerpt from the previous

emails:

> Payment:

>

> If you want to get details ... just pay $ 50 to a

> friend of mine who will tend to the administration

> of it all:

>

> [ here a numbered bank account in the name of ]

> [ someone not clearly connected to these two ]

> [ swindlers is listed ... Or perhaps they are ]

> [ all the same person ... that's one of the ]

> [ problems with the Internet .. anonymity can ]

> [ make it easier for the swindler ... ]

>

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

> the information 2 weeks earlier!

>

> [ Why? What does that do other than line the ]

> [ pocket of a swindler. No proof (other than ]

> [ the drivel passed on as a cure is provided. ]

>

> [ and lots more of this nonsense follows .. ]

But back to today's message:

> YOU ARE NOT GOING TO DIE FROM THIS DISEASE ...

Folks, last time I checked, I was going to die the day I was born. So, I

now happen to know it will be sooner than I would like. But you know what,

I must assume there is a truck out there with my name on it. The question

is not how long we will live. The question is simply this: How well did

you live your life? Did you give back the blessing of life to yourself,

others, and your God?

That costs nothing, except your UTTER commitment to something beyond

yourself. And that IS the point. Not how long I live, but how well I live.

Please also note the swindler delivers this as a threat. NO THREAT can have

hold of you - even the threat of taking your life - unless you ALLOW it to

hold sway. It is also the classic progression of a swindler.

You will also note that instead of trying to understand Pam and Bill, they

decide to tear them down (presumably to their level). Folks, they have no

concept of the selfless love that Pam and Bill continue to exhibit to each

and every one of us. This swindler has no concept of what they try to

destroy.

Yet, as I tell my kids: The only thing you can control is how you act and

react to the actions of others and the world around you. I intend to see

that cup as half full and needing filling. A " pragmatic optimist " defines

me.

How do I intend to act on this? Personally I would love to just ignore it.

But we must NOT stand still in the presence of EVIL. It is nothing less

than evil to take money from those that can least afford it.

If this was such a sure thing, it would be free. Nope, I repeat my claim,

we have a swindler amongst us. Ignore it. Let Pam and Bill deal with it.

Regards,

=jbf=

B. Fisher

April 8, 2002