Re: [MBZ] Neuropathy & IVIG
I had IVIG treatments back in the late 90s when my disease 1st raised its ugly head. I was to the point I was only sleeping 10 min or so at a time due to pain and those 10 min were not very restful. It's amazing what sleep deprivation will do. The 1st IVIG treatment was pretty effective. I got about 5 hours of great sleep for a change. 6 months later I got another IVIG treatment and it was effective for a couple of months. We tried once more but I didn't see change at all. we then went to narcotics and my neurologists turned me over to a Anesthesiologist who tried similar methods before putting a pump under the skin with Dilaudid (concentrated morphine) in it dripping into my spine. at some point in the early '00s, a med called Lyrica was developed which made a huge positive difference. But I'm not so sure the original diagnosis was 100% accurate. I'd like to try weight loss and exercise but it's so hard to exercise when my legs are a problem. My ortho surgeon suggested water exercise which I hope to try soon. so we'll see. mao said he forgot what caused the need for IVIG -- nerve damage. There are variants but I was told mine is Chronic Inflammatory demylinating polyneuropathy. (CIDP) . There's also Guilleme Berret (sp?) which can also be quite bad. My only symptom is extreme pain while others have pain and muscle loss causing some to become wheelchair bound. Others have seen remission and have become almost 100% again. Back to mao - my problem is the mylin covering on the nerve bundles is being attacked by antibodies - when mylin is lost the signals to the brain are confused. The nerve bundles look like millions of sausage strings and the casing would be the mylin. Wilt & I both have the same disease - when I was getting the IVIG I was told it was a $10K prescription -- thankfully I have insurance that covered it. Some people have IVIG treatments very often - like 2-3 per week. Maybe that would have helped me? But since the 3rd single treatment didn't help it wasn't suggested that I continue.Plus, for me, it was such an unpleasant experience i was not in much of a hurry to repeat treatments. I am convinced one of the injections caused a DVT (blood clot in leg) even though the Neur. said that wasn't the cause. I'm convinced the thick, cold fluid that was fed into my vein did not breakdown enough before reaching my legs and caused the blood in my leg to coagulate causing the clot. But that's my interpretation. Before this (in ~1996) I never lost time from work due to illness. But this makes up for it. ;-) The fun just never ends... LarryT 91 300D On 11/71/2014 2:25 PM, Rich Thomas via Mercedes wrote: was taking that stuff and still progressively declining. She changed her diet and took up exercise and riding horses and stuff like that, and has improved considerably. Apparently that is the experience of many. FWIW, I have no idea how that might relate to your situation, but I thought it was quite interesting. --R On 11/7/14 12:35 PM, WILTON via Mercedes wrote: 'Went for intravenous immunoglobulin (IVIG) treatment at 7; home by 10. Wilton - Original Message - From: "Craig via Mercedes" To: "Mercedes Discussion List" Sent: Friday, November 07, 2014 11:41 AM Subject: Re: [MBZ] (no subject) On Fri, 7 Nov 2014 10:15:28 -0500 WILTON via Mercedes wrote: Works W Yup. So what are you up to today, Wilton? Craig ___ http://www.okiebenz.com To search list archives http://www.okiebenz.com/archive/ To Unsubscribe or change delivery options go to: http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com All posts are the result of individual contributors and as such, those individuals are responsible for the content of the post. The list owner has no control over the content of the messages of each contributor. ___ http://www.okiebenz.com To search list archives http://www.okiebenz.com/archive/ To Unsubscribe or change delivery options go to: http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com All posts are the result of individual contributors and as such, those individuals are responsible for the content of the post. The list owner has no control over the content of the messages of each contributor. ___ http://www.okiebenz.com To search list archives http://www.okiebenz.com/archive/ To Unsubscribe or change delivery options go to: http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com All posts are the result of individual contributors and as such, those individuals are responsible for the content of the post. The list owner has no control over the content of the messages of each contributor. ___ http://www.okiebenz.com To search list archives http://www.okiebenz.com/archive/ To Unsubscribe o
Re: [MBZ] Neuropathy & IVIG
LarryT wrote: > The fun just never ends... All I can say for you and WILTON - ouch!! Really!! mao ___ http://www.okiebenz.com To search list archives http://www.okiebenz.com/archive/ To Unsubscribe or change delivery options go to: http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com All posts are the result of individual contributors and as such, those individuals are responsible for the content of the post. The list owner has no control over the content of the messages of each contributor.
Re: [MBZ] Neuropathy & IVIG
When Wilton told me his diagnosis, I researched it and other autoimmune diseases. To make a long story short, there is some interesting experimentation and successes involving fecal transplants. (Fecal transplant is removing a patients feces and replacing it with known healthy feces from a donor.) There are probably human trials going on which will be reported out eventually, but most published trials so far only describe successes with lab animals that have autoimmune diseases. 1500 different organisms, viri, bacteria, parasites, etc. have been isolated from human feces. Some of those are known to emit toxins that cause disease, and viruses especially, can go right through the walls of the intestine and continually attack various organs and tissues. Fecal transplant has entered mainstream medicine via the treatment of patients who have a bacterium growing in their intestine (clostridium difficile) that is often resistant to all antibiotics and can be fatal. It's success has led to the manufacture and sale of "tablets" of feces that are easier to ingest than flavored and disguised drinks of feces (which is more effective than fecal enemas). Since the continual growth of organisms in the feces that that are causing disease can be dependent on a persons diet, a simpler and often worthwhile "test" is to put the patient on an "exclusion" diet different from the patients diet. In the view of a number of "renegade" physicians and researchers, autoimmune diseases, as well as a number of others, are cause by viri or other organisms and the toxins they produce. Current orthodoxy, however, is that autoimmune disorders are caused by internal "mistakes" caused by the bodies immune system. Time will tell. Gerry...a medical professional who learned long ago never to recommend a drug or procedure to an individual patient that wasn't officially certified by the government for a particular disease. The legal consequences can be considerable. http://en.wikipedia.org/wiki/Fecal_bacteriotherapy a b Borody TJ, Leis S, Campbell J, et al. (2011). "Fecal Microbiota Transplantation (FMT) in multiple sclerosis (MS)". Am J Gastroenterol 106: S352. ^ a b c Ananthaswamy, Anil (19 January 2011). "Faecal transplant eases symptoms of Parkinson's". New Scientist. Retrieved 2013-01-22. Also, enter "veterinary treatment with fecal transplant" in www.bing.com It seems that vets are having successes with fecal transplant as well. ... LarryT via Mercedes wrote: > I had IVIG treatments back in the late 90s when my disease 1st raised > its ugly head. I was to the point I was only sleeping 10 min or so at a > time due to pain and those 10 min were not very restful. It's amazing > what sleep deprivation will do. > > The 1st IVIG treatment was pretty effective. I got about 5 hours of > great sleep for a change. 6 months later I got another IVIG treatment > and it was effective for a couple of months. We tried once more but I > didn't see change at all. we then went to narcotics and my neurologists > turned me over to a Anesthesiologist who tried similar methods before > putting a pump under the skin with Dilaudid (concentrated morphine) in > it dripping into my spine. > > at some point in the early '00s, a med called Lyrica was developed which > made a huge positive difference. But I'm not so sure the original > diagnosis was 100% accurate. > > I'd like to try weight loss and exercise but it's so hard to exercise > when my legs are a problem. My ortho surgeon suggested water exercise > which I hope to try soon. so we'll see. > > mao said he forgot what caused the need for IVIG -- nerve damage. There > are variants but I was told mine is Chronic Inflammatory demylinating > polyneuropathy. (CIDP) . There's also Guilleme Berret (sp?) which can > also be quite bad. My only symptom is extreme pain while others have > pain and muscle loss causing some to become wheelchair bound. Others > have seen remission and have become almost 100% again. > > Back to mao - my problem is the mylin covering on the nerve bundles is > being attacked by antibodies - when mylin is lost the signals to the > brain are confused. The nerve bundles look like millions of sausage > strings and the casing would be the mylin. > > Wilt & I both have the same disease - when I was getting the IVIG I was > told it was a $10K prescription -- thankfully I have insurance that > covered it. Some people have IVIG treatments very often - like 2-3 per > week. Maybe that would have helped me? But since the 3rd single > treatment didn't help it wasn't suggested that I continue.Plus, for > me, it was such an unpleasant experience i was not in much of a hurry to > repeat treatments. I am convinced one of the injections caused a DVT > (blood clot in leg) even though the Neur. said that wasn't the cause. > I'm convinced the thick, cold fluid that was fed into m
Re: [MBZ] Neuropathy & IVIG
For the last few minutes 'I've been trying to suppress my thoughts on the matter; then thought I really shouldn't say anything, but I just couldn't stand it - 'gonna hafta go ahead and say it, anyway. I've tried for many years to not take a bunch of "crap" (substitute appropriate word) from anybody. ;<) Wilton - Original Message - From: "archer75--- via Mercedes" To: "LarryT" ; "Mercedes Discussion List" Sent: Monday, November 10, 2014 9:47 PM Subject: Re: [MBZ] Neuropathy & IVIG When Wilton told me his diagnosis, I researched it and other autoimmune diseases. To make a long story short, there is some interesting experimentation and successes involving fecal transplants. (Fecal transplant is removing a patients feces and replacing it with known healthy feces from a donor.) There are probably human trials going on which will be reported out eventually, but most published trials so far only describe successes with lab animals that have autoimmune diseases. 1500 different organisms, viri, bacteria, parasites, etc. have been isolated from human feces. Some of those are known to emit toxins that cause disease, and viruses especially, can go right through the walls of the intestine and continually attack various organs and tissues. Fecal transplant has entered mainstream medicine via the treatment of patients who have a bacterium growing in their intestine (clostridium difficile) that is often resistant to all antibiotics and can be fatal. It's success has led to the manufacture and sale of "tablets" of feces that are easier to ingest than flavored and disguised drinks of feces (which is more effective than fecal enemas). Since the continual growth of organisms in the feces that that are causing disease can be dependent on a persons diet, a simpler and often worthwhile "test" is to put the patient on an "exclusion" diet different from the patients diet. In the view of a number of "renegade" physicians and researchers, autoimmune diseases, as well as a number of others, are cause by viri or other organisms and the toxins they produce. Current orthodoxy, however, is that autoimmune disorders are caused by internal "mistakes" caused by the bodies immune system. Time will tell. Gerry...a medical professional who learned long ago never to recommend a drug or procedure to an individual patient that wasn't officially certified by the government for a particular disease. The legal consequences can be considerable. http://en.wikipedia.org/wiki/Fecal_bacteriotherapy a b Borody TJ, Leis S, Campbell J, et al. (2011). "Fecal Microbiota Transplantation (FMT) in multiple sclerosis (MS)". Am J Gastroenterol 106: S352. ^ a b c Ananthaswamy, Anil (19 January 2011). "Faecal transplant eases symptoms of Parkinson's". New Scientist. Retrieved 2013-01-22. Also, enter "veterinary treatment with fecal transplant" in www.bing.com It seems that vets are having successes with fecal transplant as well. ... LarryT via Mercedes wrote: I had IVIG treatments back in the late 90s when my disease 1st raised its ugly head. I was to the point I was only sleeping 10 min or so at a time due to pain and those 10 min were not very restful. It's amazing what sleep deprivation will do. The 1st IVIG treatment was pretty effective. I got about 5 hours of great sleep for a change. 6 months later I got another IVIG treatment and it was effective for a couple of months. We tried once more but I didn't see change at all. we then went to narcotics and my neurologists turned me over to a Anesthesiologist who tried similar methods before putting a pump under the skin with Dilaudid (concentrated morphine) in it dripping into my spine. at some point in the early '00s, a med called Lyrica was developed which made a huge positive difference. But I'm not so sure the original diagnosis was 100% accurate. I'd like to try weight loss and exercise but it's so hard to exercise when my legs are a problem. My ortho surgeon suggested water exercise which I hope to try soon. so we'll see. mao said he forgot what caused the need for IVIG -- nerve damage. There are variants but I was told mine is Chronic Inflammatory demylinating polyneuropathy. (CIDP) . There's also Guilleme Berret (sp?) which can also be quite bad. My only symptom is extreme pain while others have pain and muscle loss causing some to become wheelchair bound. Others have seen remission and have become almost 100% again. Back to mao - my problem is the mylin covering on the nerve bundles is being attacked by antibodies - when mylin is lost the signals to the brain are confused. The nerve bundles look like millions of sausage strings and the casing would be the mylin. W
Re: [MBZ] Neuropathy & IVIG
For the last few minutes 'I've been trying to suppress my thoughts on the matter; then thought I really shouldn't say anything, but I just couldn't stand it - 'gonna hafta go ahead and say it, anyway. I've tried for many years to not take a bunch of "crap" (substitute appropriate word) from anybody. ;<) Wilton I Love the attitude. But if you could take a feces pill from somebody that really helped you, would you swallow the bitter pill? ___ http://www.okiebenz.com To search list archives http://www.okiebenz.com/archive/ To Unsubscribe or change delivery options go to: http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com All posts are the result of individual contributors and as such, those individuals are responsible for the content of the post. The list owner has no control over the content of the messages of each contributor.
Re: [MBZ] Neuropathy & IVIG
Key words - REALLY HELP - maybe. Actually, I'm getting antibodies from hundreds, maybe, thousands, of people now - that's what the immunoglobulin is - extracted from donors' blood. Wilton - Original Message - From: "Curly McLain via Mercedes" To: "Mercedes Discussion List" Sent: Monday, November 10, 2014 11:18 PM Subject: Re: [MBZ] Neuropathy & IVIG >For the last few minutes 'I've been trying to suppress my thoughts on the >matter; then thought I really shouldn't say anything, but I just couldn't >stand it - 'gonna hafta go ahead and say it, anyway. I've tried for many >years to not take a bunch of "crap" (substitute appropriate word) from >anybody. ;<) Wilton I Love the attitude. But if you could take a feces pill from somebody that really helped you, would you swallow the bitter pill? ___ http://www.okiebenz.com To search list archives http://www.okiebenz.com/archive/ To Unsubscribe or change delivery options go to: http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com All posts are the result of individual contributors and as such, those individuals are responsible for the content of the post. The list owner has no control over the content of the messages of each contributor. ___ http://www.okiebenz.com To search list archives http://www.okiebenz.com/archive/ To Unsubscribe or change delivery options go to: http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com All posts are the result of individual contributors and as such, those individuals are responsible for the content of the post. The list owner has no control over the content of the messages of each contributor.
Re: [MBZ] Neuropathy & IVIG
Gerry wrote: > ...there is some interesting experimentation and successes involving fecal > transplants. (Fecal transplant is removing a patients feces and replacing it > with known healthy feces from a donor.) > Thanks for telling us about fecal transplant. I heard about this several months ago on NPR program titled People's Pharmacy. Video at youtube are also available to hear about how it works. Difficile is quite the bugger for persons from what these articles have said. The one thing I don't like about this is all the emphasis on autoimmune as catch-all for many malady these days. It sounds more like the '80's all over again with acquired immune deficiency which carries negative connotation, but difficile seems to be of a much different character than some odd personal habits... fwiw. Yeah, don't bring out the pooserator for that comment - ya gotta admit the acquired stuff is connected with personal habit. Please keep us up-to-date about difficile fecal treatments, just to be up-to-speed about odd medical progress. 90 years ago taking insulin from pigs was quite the odd thing, until pharma picked it up as a money maker. mao ___ http://www.okiebenz.com To search list archives http://www.okiebenz.com/archive/ To Unsubscribe or change delivery options go to: http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com All posts are the result of individual contributors and as such, those individuals are responsible for the content of the post. The list owner has no control over the content of the messages of each contributor.
