Posted by: Cynthia ®
12/09/2002, 20:29:40
Author Profile Mail author
|
That is great news! Whether your doctor is on to something or not, it's good to hear of its effectiveness for you! I'm making a copy of your post and will certainly ask my dr. about it. Thank you for sharing.
Cynthia
|
Posted by: Lynn Yarbrough ®
12/10/2002, 13:41:35
Author Profile Mail author
|
Wow! That's great news, especially if the Drs. who use it can get a handle on how to calibrate the doses and the mount of albumin to use. I have frequently thought there must be something strange about some people who are not helped by Botox, because it is such a potent toxin. Now it looks as if someone has found a way to make it work better, with very little extra preparation. I agree, that's exciting!--- Lynn
|
Posted by: Virginia ®
12/10/2002, 14:10:42
Author Profile Mail author
|
Could you post your doctor's name and location so other doctors can contact him for more information?
|
Posted by: Nancy MacDonald ®
12/10/2002, 17:01:53
Author Profile Mail author
|
Hi Virginia, I would be glad to provide that information for you. His name is Dr. Gary Borodic from Townsend/Borodic Opth. Assoc. 100 Charles River Plaza, Boston, MA Tel: 617-720 0127. He is the doctor in Massachusetts who has done the most research on BEB. After treating me for 2 years no success I had lost all hope of being functional. I am so exciting to have my life back. Hopefully he will be able to help you.Happy Holidays to all Nancy
|
Posted by: Virginia ®
12/10/2002, 18:23:12
Author Profile Mail author
|
Thanks for the info and for sharing this with us. I find that I am less and less responsive to Botox and it's good to know that there is another avenue to pursue. I hope you continue to have success and congratulations on getting your life back. We love to hear good news.Virginia in AL
|
Posted by: Jeannie Day ®
12/10/2002, 20:16:31
Author Profile Mail author
|
Nancy, I told my doctor about this today when I received my injections-- Dr. John Burns, of Columbus,OH. He had never heard of this(increasing it), but was very much interested in finding out more. He said that he thought that the albumin had been decreased in recent years.
Jeannie in Ohio which is supposed to get sleet tonight.
|
Posted by: Kathy in Oregon ®
12/12/2002, 07:26:13
Author Profile Mail author
|
Nancy, is he the only doctor who has tried this approach as far as you know?
|
Posted by: Delaine Inman ®
12/12/2002, 09:25:40
Author Profile Mail author
|
Thanks so much for the info and I'm so glad it worked for you. I'm going to email the Botox rep, and every Doc on my email list to see if they are aware of this. Thanks!
|
Posted by: Shirley-Arkansas-USA ®
12/12/2002, 09:44:01
Author Profile Mail author
|
Last night I sent the info off to the BOTOX website information email address for comments. They have responded to my emails before (it sometimes takes a while). You let us know what you find out and I'll do the same.Shirley who thanks Nancy for posting about this addition to the BOTOX that helped her.
|
Posted by: Delaine Inman ®
12/12/2002, 14:40:19
Author Profile Mail author
|
My neurologist just emailed me.Hi, Delaine I just got back from a meeting in Puerto Rico about Botox. Some of the really great physicians of the world who give botox were there. There was no mention of Albumin with Botox. If I hear anything, I will let you know. Lucy
|
Posted by: Nancy MacDonald ®
12/13/2002, 08:25:03
Author Profile Mail author
|
Hoping this works for all of you. Happy Holidays
Let me know about any responses from drug co and doctors--modified by Nancy MacDonald at Fri, Dec 13, 2002, 08:26:08
|
Posted by: Shirley-Arkansas-USA ®
12/13/2002, 15:36:11
Author Profile Mail author
|
Ok, I got an email back from Allergan today. I didn't think that they would be able to comment very much on it. They did respond though and if they weren't are now aware of what Dr. Boradic is doing. It would be my guess that they already knew but that is just my opinion.
There response is as follows:Dear Ms. Barr: Thank your for your interest in Allergan and BOTOX(r) (Botulinum Toxin Type A) purified neurotoxin complex. BOTOX(r) was licensed by the FDA on December 29, 1989 and is indicated for the treatment of blepharospasm and strabismus associated with dystonia, including benign essential blepharospasm or VII nerve disorders in patients 12 years of age and above, and also for the treatment of cervical dystonia in adults to decrease the severity of abnormal head position and neck pain associated with cervical dystonia. You had an inquriy concerning Dr. Borodic's reported practice patterns when injecting BOTOX® for the treatment of blepharospasm. It is difficult to comment without speaking directly to Dr. Borodic about exactly what he did. As you know, each patient presents with an individual set of symptoms and treatment history. It cannot be assumed that because a reported treatment is effective in one challenging or unusual case, that it would be appropriate to treat the general population in the same manner, or to assume it would be as effective. In addition, Allergan, as the manufacturer of BOTOX®, is required to substantiate its recommendations on the product, including claims of efficacy and safety, with robust clinical studies that are reviewed and approved by the FDA. In essence, Allergan would have to have evidence from controlled clinical studies before being able to appropriately comment on any change to what is currently recommended. If I can be of further assistance to you, please feel free to contact me at (800) 433-8871, x6351. Sincerely, Nancy Grondhuis
Principal Medical Information Specialist
ALLERGAN
|
Posted by: June in Toronto ®
12/14/2002, 05:54:38
Author Profile Mail author
|
Thanks for posting Allergan's reply, Shirley - they really didn't tell us anything. I faxed a copy of Nancy's post about this subject to my neurologist - I hope he will follow up with Dr. Borodic and tell me what he thinks. Nancy's results to the added albumin to the botox was so significant that we can't allow this to go unchecked. June in Toronto who is up (again) far too early on this Saturday morning.
|
Posted by: Ann Doyle ®
12/15/2002, 12:06:23
Author Profile Mail author
|
June, I think it implied that they can't recommend changing the product by increasing or decreasing one of the ingredients without extensive(spelled expensive)testing. Ann D.
|
Posted by: June in Toronto ®
12/15/2002, 13:59:44
Author Profile Mail author
|
Yes, Ann, I understood that - but Nancy's results were so positive I thought my doctor should know about it and the doctor's name who injected her and perhaps he would follow up on it from Canada to the U.S.A. If there is something to using more albumin in Botox WE ALL want to know about it, either now or eventually when enough test results are in.June in Toronto
|
Posted by: Nancy MacDonald ®
12/17/2002, 09:13:40
Author Profile Mail author
|
Hey June, Yes there is albumen in botox but as far as how much or if there was more some other time I don't know. My doctor did say that there is albumen already in Botox but they don't know who they are I am assuming he talked to Allergan.) discussed increasing the amount for hard to treat patients. Nancy in Massachusetts
|
Posted by: Alan Phair ®
12/14/2002, 12:43:37
Author Profile Mail author
|
Shirley, I guess I am coming in on this late and don't know what is being referred to. I go to Dr. Borodic as you know and have been for a long time. Just what is it that is being referred to...AlanI have to admit I have been so busy that I have not been readinga ll the posts so it is easy for me to miss things. The eyes are not that great either...Alan
|
Posted by: Delaine Inman ®
12/14/2002, 17:28:13
Author Profile Mail author
|
Go to the tope of the thread on the post re: Albumin and Botox from Nancy MacDonald Dec. 9 2003, 20:03. Dr. Borodic is her doc and he gave her Botox mixed with more Albumin and has had the best results ever. We all began emailing doctors and Allergan and Shirley got a response. I posted a response from a doc who knows Dr. Borodic as well. Hope this helps. Sorry your eyes are not the best. We've talked about you and included you in our 12 days of Christmas song. Have you been up to doing Santa? Stay off those roof tops.
|
Posted by: Alan Phair ®
12/15/2002, 19:29:48
Author Profile Mail author
|
Delaine, thanks for responding. Actually, I just got back from playing Santa to 115 kids this afternoon at the Knights. It was a great time and although my eyes gave me a little trouble, the prayers worked and I made it through it. I did it three times this year which is a far cry from the usual number. I have one more to do and it should be fun. Each year,many of the neighbors go out Christmas Caroling to houses. This year, we are getting a sleigh and horse drawn (reindeer) and I am being SAnta . The kids wil see me in the background when the carolers sing. It should be pretty cool.As for Dr. Borodic, I will speak with him about the Albumin when I go see him next month. I know that he is not a big fan of Allergan as he doesn't believe they do enough research in the BEB area.
|
Posted by: Kathy in Oregon ®
12/16/2002, 08:42:28
Author Profile Mail author
|
That last sentence , alan , is very important . He cares enough to do research on this alone, then.
I'm sure you made a good santa.
|
Posted by: Nancy MacDonald ®
12/17/2002, 09:20:56
Author Profile Mail author
|
Hey Alan, is Dr. Borodic your doctor?? I didn't realize that. Dr. Borodic said he gave more allergan to 29 patients, I guess you were not one of them?? He really wanted me to have this because I had a hard time getting in to his office. So if you are having a difficult time I am sure he will try more albumen. He called me 2 days after my shot and I told him my eyes were open. His reply was okay so that worked for you. You know he was thinking as he usually does. Well I wish you luck with this it changed my life. Now my only fear is that he can't duplicate it the second time. Well so much for negative thinking. \\Good luck
|
Posted by: Alan Phair ®
12/19/2002, 07:41:42
Author Profile Mail author
|
ancy, I have been going to Dr. Borodic since 1997. I am scheduled for botox next month and will talk to him aboutthe additional Albumin. I get little if any results from the botox now and maybe he feels that my case and others like me on both sides of the spectrum may skew his results. Typically in the first part of experimenting, you want to deal with the middle class of patients (I don't know if you fall into that category or not) as they are the ones who will be more likely to see results one way or the other. ...Alan
|
Posted by: Shirley-Arkansas-USA ®
12/14/2002, 17:28:17
Author Profile Mail author
|
Nancy MacDonald had posted a note about Dr.Borodic giving her BOTOX injections with additional albumen. She obtained much more positive results with this mix. Read her post at the top of this thread.Shirley in Arkansas
|
Posted by: Delaine Inman ®
12/14/2002, 17:31:11
Author Profile Mail author
|
Now how is that for timing, we posted at the exact same time to Alan!
|
Posted by: Shirley-Arkansas-USA ®
12/14/2002, 17:50:40
Author Profile Mail author
|
Timing is everything. :-) We did good!
I sure hope Alan appreciates all this double duty. Do you know what he's getting us for Christmas? Maybe he'll send us on a cruise or something. :-)Shirley
|
Posted by: Kathy in Oregon ®
12/15/2002, 09:07:00
Author Profile Mail author
|
I hope it's not with our eyes all bad at one time and a norwalk virus. How's that for a visual!?
|
Posted by: Delaine Inman ®
12/15/2002, 11:47:34
Author Profile Mail author
|
He might send us on a cruise as to get even with us just because we pick on him. I could barely walk down the hall on a cruise ship before BEB. I did have on a Scopolamine patch and didn't get sick. That was years and years ago. Hawaii would be nice.
|
Posted by: Alan Phair ®
12/15/2002, 19:37:36
Author Profile Mail author
|
Gee it's great that the two of you think of me at the same time (well maybe not so good). I am ready for a cruise and I do think Hawaii would be nice. Jan and I have talked about going back there but she doesn't like to fly as it is and that is a long way. A cruise might be nice. Let's see now. If you both come alone, three woman and me might work. Only problem is, I don't think Jan would go along with it let alone Roy.
|
Posted by: Delaine Inman ®
12/15/2002, 21:27:28
Author Profile Mail author
|
I've had doctors and patients tell me they don't think Botox is the same as it was before Allergan took it over. When I mentioned this to my Allergan rep he said that was nonsense and that it was essentially the same batch as the original. But at the conference I remember the Allergan person saying that fewer people became immune to it now because they that done some things to improve it. If they took out some Albumin that could certainly make it less effective and not last as long. I know the foundation doesn't like us to say anything anti-Allergan because if it were not for them we'd have no Botox because it is so expensive to jump through the hoops to produce it. I am grateful, but not altogether buying into "we should not question them or hold them accountable" for doing more and telling the truth. I know as the demand goes up it would be nice if the price went down for medical use. I know there are two sides to the coin and some of the things I was concerned about and assured would not happen when the FDA approved the cosmetic have happened and the promises to do more education to insurance companies has not happened. I've been told by our rep that millions are being spent on "neurological" disorders that no one else is interested in doing. I hope that is true.
|
Posted by: Kathy in Oregon ®
12/16/2002, 08:37:49
Author Profile Mail author
|
Are you saying , Delaine , that the albumen was originally in there?? and that by taking it out it BECAME less effective?
|
Posted by: Delaine Inman ®
12/16/2002, 10:11:28
Author Profile Mail author
|
No, I don't know what was there are how they may have changed it.
|
Posted by: pippa from scotland ®
12/12/2002, 17:46:25
Author Profile Mail author
|
I am absolutely delighted for you. And thanks for posting this as it gives us all hope.
Pippa from scotland
PS I thought albumin was egg white.....
|
Posted by: Delaine Inman ®
12/12/2002, 21:26:20
Author Profile Mail author
|
It is the protein in the egg white and in your blood.
|
Posted by: Nancy MacDonald ®
12/13/2002, 08:27:48
Author Profile Mail author
|
My doctor tells me it is a blood protein good luck and happy holidays
|
Posted by: Ann Doyle ®
12/17/2002, 12:22:58
Author Profile Mail author
|
I remember from High School that the eye had 2 kinds of liguid, one was vitrius and like water and I believe the other was albumin. At least it had the very same consistancy as egg whites. I'm not going to swear to that one since it was about 50 years ago. Ann
|
Posted by: Shanasy in IL ®
12/13/2002, 08:45:35
Author Profile Mail author
|
This is wonderful news! Thank you so much! However I have a thought here and I welcome anyone elses's opinion on this. If this is the miracle it appears to be (for many),I can't imagine dr's being too receptive to this. They've gotta be making a ton of money on giving botox - especially since it is therapeutic and they can charge such outlandish prices for it. For example, my dr. charges a little over a $1000 for each 15 minute botox visit. He does a botox clinic one day a month in which he has about 24 patients. That's over $24,000 gross... in one MORNING!!!! (he gets everybody done by noon). I haven't the foggiest what overhead there is for medical offices, but let's say, generously, it is 75%. That gives him $6,000 profit in his pocket. Not bad for one Sat. morning a month! If the albumin worked this well, it would seriously cut into his botox profit, big time! I know I am playing Devil's advocate here, but it certainly seems relaistic! If a dr. truly wanted to help a BEB patient, he would not just say "I've never heard of it"...he should be following that up with "I will definately look into it and see if it can help". Anyone had a dr. say that? I am sending this info to my dr. and am looking forward to see what HIS repsonse is. Would like to hear if ANYONE has a dr. who actually states interest in pursuing this...if so ...this would be a truly an altruistic dr. I hope there are more out there than I think!
|
Posted by: Kathy in Oregon ®
12/13/2002, 09:08:09
Author Profile Mail author
|
Well, if it is indeed new information, chances are that not many doctors have heard of it, yet.
|
Posted by: Delaine Inman ®
12/13/2002, 19:04:38
Author Profile Mail author
|
Well I've had a second doctor respond to my email about albumin. He asked if I had any other information on this. I sent him everything that has been posted which included the doctor's phone number. I also thanked him for asking and caring. I have had many doctors tell me how frustrating BEB is to treat and many of them look me in the eye with sincere hearts and say they wish they could stop the spasms and eye closure. I know they mean it. Their offices are full of patients and only a few of their total patients have BEB. They would survive very nicely without us I think. I'm sure there are a few who are all about money, but there are many who are not. They are struggling to stay open with the high cost of overhead and the low rate of reimbursement. Many doctors have seen their incomes go wayyyyyyyyyyyyyyyy down and they still are working longgggggggggggggg hours and on call. It is not easy to be in health care today. Fewer doctors and nurses are going there or staying there because of the stress.
|
Posted by: Jeannie Day ®
12/13/2002, 19:16:49
Author Profile Mail author
|
I received my Botox injections this past Tuesday(10th) and I asked my doctor about albumin. He had not heard of any extra use of it, but said that there is already some in the Botox. He did express interest and asked me to send any information I had about it.
Dr.John Burns in Columbus, OH.Jeannie in Ohio awaiting the 3-4 inches of snow overnight.
|
Posted by: Margo Heller-Levy ®
12/13/2002, 09:28:30
Author Profile Mail author
|
Hello! I also go to Dr. Borodic in Boston for Botox injections. He is my third Botox MD having not achieved maximum relief since i was first diagnosed in March of 2002. First of all, he seems very accomplished and experienced having treated over 5000 botox patients. He told me that he started out as a chemist, became an MD and was involved in the original botox trials. He's been giving Botox for over 20 years! He gave me more than my previous doctors, injected different sites and spent a long time with my husband and I just talking. I do think I'm having much better results-still not 100%- but much better. He did mention botox bound with albumin to me for "stubborn" caes. He also said he was working on several other strengths for other patients. So I really do think there's hope out there! Good luck to all!
|
Posted by: Kathy in Oregon ®
12/14/2002, 09:07:03
Author Profile Mail author
|
This still remains highly important then for those the botox is not effective on. this has to be a caring doctor . it just took a month for my botox to become effective and there's always the worry that it won't work.
|
Posted by: Delaine Inman ®
12/14/2002, 12:44:38
Author Profile Mail author
|
I did correct a few misspelled words. Sorry for the way is transfered to post.Thanks for the information.
>
> I know Gary through ASOPRS. We did the clinical trials for him about
> 5 years ago for botox E used for aberrant regeneration patients.
>
> We have one of the largest series of facial palsy patients (the
> oppositive of blepharospasm) here in Nashville through the Glasscock-jackson
> neuro-otology group at Baptist. Gary came down and met with us hoping he
> could use several centers for find enough patients for his trial.
>
> Mike Glasscock gave him more than enough patients about two hours
> later so the trial was done here in Nashville for his company in Boston.
>
> Gary is top notch and his opinion and experience are extremely
> valuable.
>
> Allergan's response is very appropriate. I recall a noted
> neuro-ophthalmologist, Dr. Joel Glaser from the Bascom Palmer Eye Institute
> (one of the most respected in the world) recalled his experience with a
> particular drug.
> Dr. Glaser started two patients on the drug and obtained perfect
> control of the blepharospasm. He wrote a letter to the Archives of
> ophthalmology describing the success of this drug. The letter was published
> immediately.
> He used the drug on twenty more patients and never again had a success
> with the drug. We have all had instances like that which is why it is
> important to collect larger series of data. Patients who are desperate and
> not succeeding to usual treatments are vulernable to try things that may not
> be very well established.
>
> I recall the first two patients in whom I performed myectomies had
> long standing perfect results. However that initial success of myectomies
> lasting 5 - 9 years is not typical.
>
> Recall a few years ago when the group from Yale published 5
> consecutive patients with blepharospasm responding to Periactin. This was
> published as a letter to the prestigious New England Journal of Medicine. I
> have used this on over 200 patients and there is perhaps success in about 10
> % of the patients.
> The people who wrote this letter are honest, conscientious and wanted
> to share this immediately so blepharospasm patients could be helped. But a
> larger series is needed due to the tremendous variation in how our
> blepharospasm patients respond.
>
> Younger patients generally do the worst.
>
> Even so, I am extremely interested to find out if increased albumin
> can be helpful. Gary will be very cautious before he makes any claims and
> may wish to rightfully wait till he has an appropriate series before
> recommending this treatment.
>
> Just like Periactin and Dr. Glaser's drug, one the information is out
> there it's harder to get the word around that the success may not be as much
> as originally thought.
>
> Look forward to any other information. --modified by Delaine Inman at Sat, Dec 14, 2002, 12:46:38 --modified by Delaine Inman at Sat, Dec 14, 2002, 12:48:15
Modified by at Sat, Dec 14, 2002, 12:48:16
|
Posted by: Shanasy in IL ®
12/14/2002, 21:07:25
Author Profile Mail author
|
Thanks for posting this! Good info and very interesting!Shanasy - intrigued by all this
|
Posted by: Kathy in Oregon ®
12/15/2002, 09:09:59
Author Profile Mail author
|
me too. It seems like if alan is going to the same doctor , it might work better for him also.
|
Posted by: Alan Phair ®
12/16/2002, 10:00:53
Author Profile Mail author
|
Kathy, as I mentioned, he has not added any Albumin in my case although I plan on asking him about it the next time I visit him for my shots. If he is, it certainly isn't helping any and if anything, the reverse is true...Alan
|
Posted by: Kathy in Oregon ®
12/17/2002, 09:00:30
Author Profile Mail author
|
Well , i guess we all need some kind of uniform answer on this. I hope it's not another wild goose chase.
|
|
