Personal Data collection
Posted: Thu Aug 04, 2005 10:29 am
This is a call to all abx users to begin to collect data. This will give more objective feedback as to how people are doing on the regimen and will provide the incentive to fund more trials.
I have kept personal data on my own ability to perform activity at the gym on the crossrobics or the elipse for several years. I did this because I read that ALCAR (acetyl l-carnitine) could help stroke victims function better by about 30% (study not online anymore). I wanted to know if it would work for MS by improving neurotransmission in some way so I worked out at they gym for a month noting how far how long then took the ALCAR and checked the difference. The difference was astonishing. I could work out 30% longer and could still walk somewhat after I did it, though I suffered and afternoon "crash"(reduction of function), which turned out to be related to oxidative damage which needs to be countered by taking glutathione or coQ along with it. I wrote a paper on it with literature research for an MS clinic.
In an unrealted item I posted some research on boston cure, and an MS gal (who had worked in medical research like I did) and who has since become my e-pal, was also doing this kind of empirical study of her own and she contacted me and we began to share data. She had discovered the same kind of treatment affect for coQ 10 which also improves neuroconduction. We have also collaborated to find that glutathione is useful, that phosphatidylserine helps especially with thinking in me, that histamine results in increased energy and function etc. We co authored a paper on boston cure that outlined how we had kept data and asked other s to contact us if they were doing this as well.
I notice the Wheldon regimen uses carnitine and coQ, both of which improve function by our data. One might speculate about how it does that ;I am not sure. Perhaps the antioxidant factor in the case of coQ is at issue. Oxidative damage plays a big role in MS no matter what that actual causitive agent is, whether CPn or Lyme or EBV or even the old (I do not believe it) autoimmune model. Certainly during treatment you want o protect the nervous tissue as all this immune activity takes place to clean up the CPn.
For this model here is what people might like to do;
Choose an exercise that is measurable in some way and which you can do regularly. If it's a walk to your post office or something that would work. I will stay with my elipse and crossrobics at the setting of 3 at the gym I go to. Take a baseline of how far you can go by doing your best for a couple of weeks and average the findings. Pushing my limit, I can go for 30 minutes on either machine. After wards, I cannot lift my right leg Keep a log of how you do. As you move through the abx regimen, you will be able to measure improvements. I suggest a regular time for checking your results. For example before each flagyl pulse, which would give a monthly reading, go ahead and make a regimens entry on this which should be your best day.
As we get two years out from now we should have a lot of people with little or no change for months, then a conversion to real advancement about the time they notice the herx reducing. I ask you, would you not take notice if there were 50 people making such entries?
If you start taking the supplements ahead of the abx, you will be able to allow for the functional improvement that they will engender. In other words, if you've not started yet with abx, take the supplements and see how you do at the gym for a while on them.
If you are already doing abx and supplements, then just start now and keep track. When you make a note in your regimens log so people can see how you are getting on be sure to note your objective data about how you are doing and people with inquiring minds can see some measurable changes. This kind of data while not truly scientific can provide some real feedback about how people are getting along with the regimen.
Bromley made a good inquiry and asked a fair question. this will give us the data to share with people. Of course, you can also use MRI's and your neurologists assessment of your edss score for extra data when you get this kind of feedback, but the exercise log is a way for each of us to be part of something bigger than ourselves. People like Bromley, and me for that matter as I've not begun the abx yet, can question the improvements. As you read page after page of people's regimen diary, you see better days and worse days. Overall there is a confusing trend towards I think I'm better. This would give people some real concrete stuff. The neuro community would have to take notice.
RECOGNIZING THAT SARAH DID NOT KNOW SHE WAS BETTER FOR AT LEAST A YEAR AND THAT THE DATA WILL SHOW MINOR OR LITTLE IMPROVEMENT UNTIL THE HERX'S START TO GO AWAY no one should feel that they are not doing well because they are not going much farther at 6 months or something. LDNers.org has been taking polls and such for the same reason, to move the MS community at large in the direction of finding LDN worth a trial.
If you are objecting at all, it's probably becasue you are thinking people won't get better for a good bit of time and we don't want people realizing they are not better yet and bailing too soon, but think about this. Every medicine there is must provide data. We can be part of our own study and findings. If nothing else you will personally have some data about how you are doing which is concrete and measurable. Sarah clearly has concrete data. It was that doctor's astonishment at her MRI that really sold her on the whole thing and heartened her up to go on and finish it. Now she's aedss2 when she was almost 8. I'm suggesting we make a data bank that will do the same for everyone.
Aimspro does not get to go around saying they are doing great things for people without backing it up with science. VU's been working towards irrefutable evidence of this approach, but we can add to the anecdotal pile in a more menaingful way here. We are being treated with flaygl and for longer. This could be important!
By the way Aimspro is a polyclonal antibody. They vaccinate goats against a bunch of things as yet undisclosed ( I assume here that these things are germs and not our brain or immune system cells), and the goats produce antibodies. You get an infusion of antibodies from Aimspro. Monoclonal antibodies are targeted against a specific part of your immune system to reduce your "inappropriate" reaction to your brain, like tysabri which blocks adhesion molecules. Polyclonals, assuming the vaccinations are germs and viruses, is like getting a dose of someone elses gamma globulin. you have immunity to whatever they were immune to. I see no reason why we would not have compatible function with abx and aimspro assuming they are vaccinating the goats against things like ebv and CPn and Lyme and that kind of thing, though the trade secret (what the vaccinations are)is not known now. I darn well hope that is how the thing works.
I hope people are on board with this idea. Just imagine a data bank of 50 people who do the abx all of them with regular EDSS and neuro feedback and that monthly preflagyl pulse readout of distance or time on a machine to back up the idea of doing better.
Does anyone think a special thread for "data" ought to be started? I see it as almost a Marie's data file and a Daunted's data file, and Eachones' data file etc. IT would have limited stuff in it, like the first entry listing the measurable thing whatever it is, the current distance or whatever, a brief note about how you feel after and anything your doctor may have told you that is measurable that week along with how long you've been on the regimen and where you are at in it ie "I started doxy/rif/amox on 8/20/05. First flagyl pulse this month. After flagyl was able to go only 10 minutes on the elipse then leg was exhausted. Today, 20 days after flagyl pulse I went for 40 minutes and was still able to walk after wards without difficulty. Next pule tomorrow."
I would appreciate a bit of a debate about how to format and structure the data entries so we get something really good.
Blessings to all!
Marie
I have kept personal data on my own ability to perform activity at the gym on the crossrobics or the elipse for several years. I did this because I read that ALCAR (acetyl l-carnitine) could help stroke victims function better by about 30% (study not online anymore). I wanted to know if it would work for MS by improving neurotransmission in some way so I worked out at they gym for a month noting how far how long then took the ALCAR and checked the difference. The difference was astonishing. I could work out 30% longer and could still walk somewhat after I did it, though I suffered and afternoon "crash"(reduction of function), which turned out to be related to oxidative damage which needs to be countered by taking glutathione or coQ along with it. I wrote a paper on it with literature research for an MS clinic.
In an unrealted item I posted some research on boston cure, and an MS gal (who had worked in medical research like I did) and who has since become my e-pal, was also doing this kind of empirical study of her own and she contacted me and we began to share data. She had discovered the same kind of treatment affect for coQ 10 which also improves neuroconduction. We have also collaborated to find that glutathione is useful, that phosphatidylserine helps especially with thinking in me, that histamine results in increased energy and function etc. We co authored a paper on boston cure that outlined how we had kept data and asked other s to contact us if they were doing this as well.
I notice the Wheldon regimen uses carnitine and coQ, both of which improve function by our data. One might speculate about how it does that ;I am not sure. Perhaps the antioxidant factor in the case of coQ is at issue. Oxidative damage plays a big role in MS no matter what that actual causitive agent is, whether CPn or Lyme or EBV or even the old (I do not believe it) autoimmune model. Certainly during treatment you want o protect the nervous tissue as all this immune activity takes place to clean up the CPn.
For this model here is what people might like to do;
Choose an exercise that is measurable in some way and which you can do regularly. If it's a walk to your post office or something that would work. I will stay with my elipse and crossrobics at the setting of 3 at the gym I go to. Take a baseline of how far you can go by doing your best for a couple of weeks and average the findings. Pushing my limit, I can go for 30 minutes on either machine. After wards, I cannot lift my right leg Keep a log of how you do. As you move through the abx regimen, you will be able to measure improvements. I suggest a regular time for checking your results. For example before each flagyl pulse, which would give a monthly reading, go ahead and make a regimens entry on this which should be your best day.
As we get two years out from now we should have a lot of people with little or no change for months, then a conversion to real advancement about the time they notice the herx reducing. I ask you, would you not take notice if there were 50 people making such entries?
If you start taking the supplements ahead of the abx, you will be able to allow for the functional improvement that they will engender. In other words, if you've not started yet with abx, take the supplements and see how you do at the gym for a while on them.
If you are already doing abx and supplements, then just start now and keep track. When you make a note in your regimens log so people can see how you are getting on be sure to note your objective data about how you are doing and people with inquiring minds can see some measurable changes. This kind of data while not truly scientific can provide some real feedback about how people are getting along with the regimen.
Bromley made a good inquiry and asked a fair question. this will give us the data to share with people. Of course, you can also use MRI's and your neurologists assessment of your edss score for extra data when you get this kind of feedback, but the exercise log is a way for each of us to be part of something bigger than ourselves. People like Bromley, and me for that matter as I've not begun the abx yet, can question the improvements. As you read page after page of people's regimen diary, you see better days and worse days. Overall there is a confusing trend towards I think I'm better. This would give people some real concrete stuff. The neuro community would have to take notice.
RECOGNIZING THAT SARAH DID NOT KNOW SHE WAS BETTER FOR AT LEAST A YEAR AND THAT THE DATA WILL SHOW MINOR OR LITTLE IMPROVEMENT UNTIL THE HERX'S START TO GO AWAY no one should feel that they are not doing well because they are not going much farther at 6 months or something. LDNers.org has been taking polls and such for the same reason, to move the MS community at large in the direction of finding LDN worth a trial.
If you are objecting at all, it's probably becasue you are thinking people won't get better for a good bit of time and we don't want people realizing they are not better yet and bailing too soon, but think about this. Every medicine there is must provide data. We can be part of our own study and findings. If nothing else you will personally have some data about how you are doing which is concrete and measurable. Sarah clearly has concrete data. It was that doctor's astonishment at her MRI that really sold her on the whole thing and heartened her up to go on and finish it. Now she's aedss2 when she was almost 8. I'm suggesting we make a data bank that will do the same for everyone.
Aimspro does not get to go around saying they are doing great things for people without backing it up with science. VU's been working towards irrefutable evidence of this approach, but we can add to the anecdotal pile in a more menaingful way here. We are being treated with flaygl and for longer. This could be important!
By the way Aimspro is a polyclonal antibody. They vaccinate goats against a bunch of things as yet undisclosed ( I assume here that these things are germs and not our brain or immune system cells), and the goats produce antibodies. You get an infusion of antibodies from Aimspro. Monoclonal antibodies are targeted against a specific part of your immune system to reduce your "inappropriate" reaction to your brain, like tysabri which blocks adhesion molecules. Polyclonals, assuming the vaccinations are germs and viruses, is like getting a dose of someone elses gamma globulin. you have immunity to whatever they were immune to. I see no reason why we would not have compatible function with abx and aimspro assuming they are vaccinating the goats against things like ebv and CPn and Lyme and that kind of thing, though the trade secret (what the vaccinations are)is not known now. I darn well hope that is how the thing works.
I hope people are on board with this idea. Just imagine a data bank of 50 people who do the abx all of them with regular EDSS and neuro feedback and that monthly preflagyl pulse readout of distance or time on a machine to back up the idea of doing better.
Does anyone think a special thread for "data" ought to be started? I see it as almost a Marie's data file and a Daunted's data file, and Eachones' data file etc. IT would have limited stuff in it, like the first entry listing the measurable thing whatever it is, the current distance or whatever, a brief note about how you feel after and anything your doctor may have told you that is measurable that week along with how long you've been on the regimen and where you are at in it ie "I started doxy/rif/amox on 8/20/05. First flagyl pulse this month. After flagyl was able to go only 10 minutes on the elipse then leg was exhausted. Today, 20 days after flagyl pulse I went for 40 minutes and was still able to walk after wards without difficulty. Next pule tomorrow."
I would appreciate a bit of a debate about how to format and structure the data entries so we get something really good.
Blessings to all!
Marie
You must understand that this is too soon for the antibiotics to be showing much based on the lifecycle of CPn and the VU work. This is a long term treatment. You don't decide to do this based only on forum posts. And you don;t stay with it when you feel punky only because of cheerleading, though you might need that encouragement because it is sometimes difficult. Read the CPn work that Daunted so aptly put together.