This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello all.
I just joined today. I read back and found some things on SF1019. I found a lot of negative. As I read I understood that for the most part people who were commenting were frustrated because of lack of info. I have found that lack of knowledge regarding drug development and how the process works can be confusing and also make persons who are desperate for a cure find fault and look for the scams, go figure everyone and there dog offers us cures or remedies, right!. I know If I hadn't had direct exposure to an SF1019 recipient I may not have believed the results myself! I have no financial interest or investments in the company. I have been in health care for over twenty four years (Rehab physical therapy) and have never seen a person come back from where they were once they get so low in function. Once you get to a certain point with your MS things just don't come back and I have not seen anything besides AIMS PRO and now SF1019 that had these results, however SF1019 is far superior with its results. Aimspro and SF1019 are both goat serums, but absolutely not the same thing. It also isn't the same as say getting IVIG treatments. Also, be careful, don't judge SF1019 by the doctor who is administrating it, if the doctor happens to come from a bad school of medicine or someone deems it so, it doesn't have some magical effect that makes the medicine non effective as in the Case of DR Morales in Mexico. I don't believe that DR Morales is a complete idiot. He has done research also in Africa with aids patients with SF1019 and is more versed in SF1019 then doctors who won't even take the time to investigate the med. Some one wondered how much for it through him, he was last I heard charging $3900.00 for the twelve week series of injections, a little over three hundred a shot. Eventually you increase to two per week if you could get the $ to do it. The doctors decide how much they are going to charge for this stuff right now. Also, the Med is not a surppressant like the other MS drugs out there. This is also different then the IVIG Med. A neurologist thought that all the SF1019 was , well was the same as IVIG, but it's not. The results will not be the same. The drug approval process is a lot of work! THERE ARE QUITE TIMES within the drug approval process, there are reasons for this, consult your lawyer who is versed in this industry. Don't panic or be alarmed because you can't get information. Its hard to get any data on a new drug being developed, go figure. As long as your not giving up any money towards something, try to be patient and wait for it rather then tear it down (EASY FOR ME TO DO ALSO BUT I TRY TO BE PATIENT) and so on. Trial results will be openly available when the FDA releases a drug on the market, then you can read all you want. University and research clinic data is released at the right time and also has legal constrains in which it may be bound by. So again, be patient. Yes, this stuff I have seen it work with someone who has severe progressive MS or I might not believe it my self. They actually live near me. Others who live in our area have seen the results also and it seems amazing. Like with any Meds, perhaps it works well for you perhaps it does not. However, SF1019 an immune modulator working on your inter luken 10 FOR example for you biochemist, a substance your body produces to enhance your immune system would do wonders for many, vast different types of diseases if you think about it. Biochemist understand the potential if its secrets were unlocked. ALSO, the big thing with any drug besides that it works is.............. knowing why does it work? They know what makes SF1019 work and you will have to wait for the info to be published. Also, I don't have any inside affiliation with the Osmonds, nor am I a close friend of Allan Osmond, but I do cross tracts with him from time to time. He is a man of deep integrity. He demonstrates him self as a very caring person who wants this to be available to everyone at affordable prices. He does not set the price and does not own the company. AND yes if I were him and had MS and the Med worked great, I would invest in it. Weather he is vested in it or not I do not know and it simply doesn't matter, it won't change the way the drug works. He has not created a scam, come on, he has MS like many others do. Sorry for raising my voice right then. He is a vocal advocate of M.S. He raises money that go's to individuals for treatment and research. The money that people donate on his site is for a good cause. Anyways, SF1019 EXIST, NOT A SCAM AND IF THE FORCES OF CONSPIRING MEN DON'T STOP IT FROM GOING TO MARKET BECAUSE IT ACTUALLY WORKS then we will all benefit from something wonderful. Any questions I will answer the best I can and with what I can say.

An interesting post when one considers that Argyll Biotechnologies who make SF1019 and Daval International who make Aimspro are engaged in a High Court battle in London.

The future legal outcome and the products are well worth watching methinks.

Thanks

Hello....
I have recently witnessed the benifits of SF1019 on patients in Southern Utah....there is a wonderful Dr. there that started using this medication last week on several patients. To watch someone walk that has been wheelchair bound after just 2 doses is amazing! I think it is worth some bad press if it helps those who needs it. Please consider this as a good thing....I personally have witnessed the miracles it is presenting

Also...please educate yourselves. SF1019 IS NOT Aimspro....two completely different medications. Who cares if there is a court battle? If it works....it works.

Praise the lord!

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Had ms for over 19 years now.

Stem cell treatments in holland were getting more than a single rave review.

I have become very cautious of any treatment making a BIG claim, but not bothering to go through the formal channels. There isnt even a single published article in google scholar.

But I'd love to have to eat my words.

Just wanted to thank UTNURSE for her comments and professionalism. Its nice to hear from someone else that has seen SF1019 used in action with excellent results. I have worked in health care along time and SF1019 is something that really needs to come to the market. I have been connecting up with different doctors speaking with them concerning SF1019. If there are any other M.D's out there that have experience with SF1019 or are considering performing trials with it I would be interested in them contacting me or being contacted by third parties.

I am one of the one's that is supporting and voicing a push for it to come to market. UtNurse please email me when you are able, I would enjoy connecting up with someone else that has also had experience with SF1019 and of course at the same time maintain patient confidetiality. Thanks Kolob

kolob, you seem overly passionate about a treatment that as far as we know, you know has helped two people. I can not help but think there is more to your interest in this treatment. Do you have MS? From what I gather, you haven't had the treatment.

You seem very clear in pointing out what it isnt, but avoid letting on too much as to what it is. I'm sorry, but it just seems as if you are not telling us everything.

This line in your first post leaves me with the impression that you are more than just an amazed bystander. So is there more?

Jaded? who me?


1. Is there any published data on it?
2. What is it that is limiting "what you can say"?
3. What does it actually do? Cure (ie Stop)? recovery (ie reverse)?
4. Is it a once off treatment? or is it required to be maintained through life?
5. What is your full involvement with the treatment?
6. Is it in any formal huiman trial? This person states its in Phase III, did we miss I & II? http://www.msrebel.com/My%20SF1019%20vaccine%20treatment.htm
7. Is it kept at -20C like aimspro?

I also found the following http://www.msrebel.com/ICPF%20%20VACCINE.htm supposedly from Dr Frank Morales

Which led to the name ICPF (previous title?) which lead to http://www.freepatentsonline.com/20050042635.html

In reply to Cure or Bust I have spoken with a contact at Argyll Biotechnologies and they have advised that neither Utnurse or Kolob has any authority to speak or post on their behalf. I am also advised that whilst some patients have been treated, the details concerning this are confidential.

They also said that

1. They do hope to undertake a formal clinical trial in the near future and an application for an IND is in the works

2. There is as yet for IP reasons and other legal issues no current published data available.

3. At present it is considered as a treatment which may stop or reverse MS, but until such time as more research is done, the jury is still out. It was also pointed out that such a complex set of peptides need to be extensively tested both in vivo and vitro and that when they are fully satisfied over the longer term as to the safety and efficacy of SF1019 and a formal trial is complete, then the appropriate details will be made available for peer review.

I did ask about side effects and was advised that no apparent ones have emerged.

4.Like any naturally occurring group of peptides without being freeze dried or containing preservatives, it does need to be stored at minus 20C or colder. Argyll went on to say it is not similar in any manner to the well reported Daval hyper-mmune product Aimspro.

They made it clear that they have no desire to promote SF1019 at this early stage and that I should understand the difficulty in stopping excited people from talking about SF1019 and that they themselves could do without such posts.

Hello Steamer. Your comments are welcome and appreciated. You are correct there are legal issue's that prevent publication of data. I actually stated something along those lines awhile back on this site. As far as the Argyll group go's I and the UTnurse as far as I could tell never stated that we represented or spoke for the company. I think it a little going overboard calling the Argyll group because of our postings. There are trials going on in different places that you don't have a clue about (I say that in all do respect and in a friendly tone). I am vocal in the medical community about it. Part of the problem is people don't know about SF1019. As far as where I get my data that is confidential. I appreciate your comments and everything you stated is correct. You obviously are educated and understand the processes involved in bringing a new Med to market. Once the data is published then I will speak more freely. Go figure no one should take anyone persons word for anything, but once you see SF1019 in action it is amazing. Perhaps it won't work on everything or everyone, but I think many will be pleased and even surprised. Everyone, listen to steamer regarding the legal issue's in regards to data that can be released.
Also, I joined this forum to connect up with others who had direct exposure to SF1019 as has the UTNurse, not to join the political drug process, this is a given. Be patient, be glad, speak and write with a sober head, what you don't understand or know it will come, and most of all don't judge someone or SF1019 because you can't know everything you want to know right now, no matter how sick or ill you are or aren't. Most of all, be kind to each other. This is kolob signing off for now, this site is lacking the contact info I am looking to gather at this time, however the web site is a noble thing, but I did discover the Utah Nurse. UTNURSE please email me and click on the PM to send me a private message. Thanks.

quote="Steamer"]In reply to Cure or Bust I have spoken with a contact at Argyll Biotechnologies and they have advised that neither Utnurse or Kolob has any authority to speak or post on their behalf. I am also advised that whilst some patients have been treated, the details concerning this are confidential.

They also said that

1. They do hope to undertake a formal clinical trial in the near future and an application for an IND is in the works

2. There is as yet for IP reasons and other legal issues no current published data available.

3. At present it is considered as a treatment which may stop or reverse MS, but until such time as more research is done, the jury is still out. It was also pointed out that such a complex set of peptides need to be extensively tested both in vivo and vitro and that when they are fully satisfied over the longer term as to the safety and efficacy of SF1019 and a formal trial is complete, then the appropriate details will be made available for peer review.

I did ask about side effects and was advised that no apparent ones have emerged.

4.Like any naturally occurring group of peptides without being freeze dried or containing preservatives, it does need to be stored at minus 20C or colder. Argyll went on to say it is not similar in any manner to the well reported Daval hyper-mmune product Aimspro.

They made it clear that they have no desire to promote SF1019 at this early stage and that I should understand the difficulty in stopping excited people from talking about SF1019 and that they themselves could do without such posts.[/quote]

Hi there. Thank you so much for your comments, they are appreciated. It is and can be frustrating not getting information on something that you hear wonderful things about and I feel for anyone out there who gets frustrated over it. Please look at steamers message below, he will also back it up that there are legal issue's with the release of information. No I do not speak for the ARGLLE group!!!!!!!! Yes, we all would get excited when you see a Med work on someone. Do you get excited about it if you hear about it second hand from a close friend, yes, somewhat but you will still be a little skeptical right? If you hear about it third hand and so on more and more skeptical, correct? But what if you saw it used first hand on a person, and not only that, you were a health care provider with decades of experience having worked with M.S patients and of course many other neurological diseases + illnesses. As you are a health care provider you get to see first hand how many of these drugs work or and don't work! You see the Meds supressing, but not restoring much function. You see your M.S patients decline over the years. You see them go up and down, each time not returning to there previous level of function. Eventually they end up in a wheelchair and the story go's on from there. They are given SF1019...after a few injections, typically 1 per week for the first twelve weeks, then if appropriate two per week with re-evaluations every three months...you see the patient walking again. They begin to state that the pain in there feet, the neuropathy is decreasing and in some cases resolving. You can hardly believe it...But you do, you have to, your seeing it first hand. Do you have to keep taking the shots the rest of your life, depends on the length of time you have had the disease and what disease process you may be treating. But you do believe what you see as a healthcare provider, but when you hear the news from a second hand source let alone on a website, what are you going to believe. A person knows what they know, I can live with that, I am okay with that and glad for that first hand knowledge. Is this a patient that I have treated, nope, but it doesn't have to be, I know them and there history and it's nothing short then amazing and wonderful. I hope some of my message was understood even as the scriptures need to be understood!!!
Please refer to Steamers message that was posted but disregard the part regarding wheather I or the UTNURSE has aurthority to speak for the Arglle Group, I and the UTNURSE never made such a claim and that is rediculous. I think this was not a great reply in regards to welcoming the UTNURSE into the forum!!! I am pushing in my own community for awareness of SF1019. I think people get to excited and on the other hand, I know what I know and have seen what I have seen and know others have had similiar experiences with SF1019. When I found this forum I thought I could simply connect up with others who had experience with SF1019 also in a professional and confidential way but have only come in contact with the UTNURSE. Everyone seems to argue weather it exist, is it a scam or works and so on. I am not sure why persons bother answering my comments if they don't believe it exist. If you want to know if it exist, do alot of homework, call the Arglle group, find someone who has used it, know the right people and that is just luck!
No I am not the patient. Thanks again for your reply, all your questions and frustration are noted. Yes there is always more to tell but that will come in the future. Right now I am only looking to connect up with other health care professionals that have had direct contact with SF1019 to discuss confidential what they have found. It is obvious that know one will disclose persons names that are using SF1019 without consent. I hope all good things for you in the future. Kolob signing off. UTNURSE please contact me through the private message email to make initial contact. Please look in your private message box for my message. Thanks

There is a website with a diary of an MS patient who is going to get the SF1019 treatment in the near future:

link


--Frank

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Treatment: CCSVI both IJV ballooned 09/2010, No DMDs, Tysabri on hold after 24 Infusions, after LDN, ABX Wheldon Regime for 1 year.

I would be most grateful if you would give me any information on how to get SF1019. I am currently in Canada and am willing to travel to get this medicine. If you have an email of the dr administering it, I would be immensly grateful.

Nancy

Dear Kolob.


I would be most grateful if you would suggest to me any dr prescribing SF1019. I am located in Vancouver, BC....so seattle would be great....


Any more info on SF1019 would also be great.


Many thanks,

N
I am one of the one's that is supporting and voicing a push for it to come to market. UtNurse please email me when you are able, I would enjoy connecting up with someone else that has also had experience with SF1019 and of course at the same time maintain patient confidetiality. Thanks Kolob [/quote]

http://proventus.org.uk/forum/viewtopic ... highlight=

They didn't work for me, I have 7 left, I live in the Swindon area. Price : open to offers.

netty

I guess that Proventus are not as biased as I first thought, but I still wonder what is going on as I still think that the product has some promise.

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Keep smiling as who knows what good things might be around the corner and if the road snakes a bit keep going.

From the Proventus website http://www.proventus.org.uk/page93a.html

From the Daval International web site. http://www.davalinternational.com/news/ ... php?nid=22

09/10/07 - Trials

Daval International Limited now has links with a number of key clinical and scientific researchers worldwide, with a growing level of interest being shown in the setting up of randomised double-blind, placebo controlled clinical trials of AIMSPRO.

A European leader in the study and treatment of a common neurological condition has recently submitted a trial protocol for consideration by an Institutional Ethics Committee and the Competent Authority.

Approval by the latter has now been received and the protocol is about to be scrutinised by the former.

If ethics approval is achieved then announcements for recruitment of patients will be made by disease charity groups. In addition, updated trials information will be regularly posted on this web site.

Any thoughts on this as I seem to have heard this before ??

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Keep smiling as who knows what good things might be around the corner and if the road snakes a bit keep going.