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Joined: Jun 18, 2004 Posts: 1723 Location: Bedfordshire UK
Posted: Fri Jan 09, 2009 11:36 am Post subject:
Just as I thought Lori! Sriram will love this.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
I have mailed the written report to him and also emailed him. He is out of the office until next week so I don't expect to hear back from him until then. But you are right, he should be pleased I would think!
Lori
Joined: Feb 10, 2006 Posts: 777 Location: Northern Virginia
Posted: Fri Jan 09, 2009 12:17 pm Post subject:
This is Really Exciting! I wish I understood as much about MRI as you do. When you're there, wake up early and hit the Pancake Pantry, it's great. Congrats! Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
Ken
If I remember correctly, Kim is having her MRI done at Vanderbilt, right? I suggest you take old films and CDs of previous MRIs (Dr. S may have told you to do that already) so that accurate comparisons can be made. I would not be surprised if Kim shows some improvement in her studies also-I sure hope so!!!
Lori
Joined: Feb 10, 2006 Posts: 777 Location: Northern Virginia
Posted: Fri Jan 09, 2009 2:04 pm Post subject:
Lori,
Excellent call! Sandy couldn't find that we left them with a copy. Seems that they don't have the ability to copy them. So I need to find them now. I suppose this falls under "Being responsible for my own health". Thanks for the heads up. Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
I finished the 12th pulse of Tindamax on Sunday. Again, the pulse was tolerable. Sunday evening I had the now familiar jitteriness, on Wednesday the nausea, and Friday the headache. Now today (Tuesday) I awoke with body aches which have subsided as the day goes on. This is a pattern of side effects that I experience each pulse. I won't be doing another pulse until I return from my appointment at Vanderbilt. I am thinking that perhaps dosages may change or perhaps even different antibioticsi will be added. I will post when I get back about what was changed, if anything.
On Monday I had my one year follow-up appointment at Vanderbilt. Once again the appointment lasted approximately 1 1/2 hours so it was very thorough. Bottom line, treatment wise, we are going to continue with the protocol as is for right now. I felt like I gave half my blood as the doctor wanted to check 1) vitamin Di level now that I have been on 50,000 IU per week for 6 months 2) cpni titers at this point 3) and blood for a genetics study Vanderbilt is currently doing.
The doctor mentioned that I would be doing this for another 2 -3 years which I was glad to hear as I have worried that he may decide I am better so should be done with this. I worried about this unnecessarily! He made it clear that you are not done with this in just a year. When I first went to Vanderbilt last year this doctor mentioned that since I was considered a "mild" case I may not want to start abxi therapy until or unless I worsened. At this appointment he told me that in the study he is conducting (which I am not a part of) the results are not "spectacular" but that he is thinking it is because most of those patients have come to him after they have failed all other therapies, so their cases are much more difficult. So Vanderbilt's current thinking is that it is better to start abxi therapy earlier rather than later (thank you to all of you who encouraged me to get started right away last year). I noticed that the doctor's demeanor was different from even the last appointment 6 months ago. He is not skeptical about this treatment any longer but rather trying very hard to learn and understand why it works for some and not for others. I took this as a very positive change. He told me to stay with all the same supplementsi that I have been taking, including NAC and vitamin D.
I go back in another 6 months for a follow up. I always learn something when I go there-I hope he also learns something from me going there!
Joined: Feb 10, 2006 Posts: 777 Location: Northern Virginia
Posted: Wed Feb 11, 2009 12:09 pm Post subject:
Hey Lori!
You feel like a pin cushion? Wow it's great to feel great and to know answers to some of those questions that float in and out of the thinking trap.
Loriyas wrote:
On Monday I had my one year follow-up appointment at Vanderbilt. Once again the appointment lasted approximately 1 1/2 hours so it was very thorough. Bottom line, treatment wise, we are going to continue with the protocol as is for right now. I felt like I gave half my blood as the doctor wanted to check 1) vitamin Di level now that I have been on 50,000 IU per week for 6 months 2) cpni titers at this point 3) and blood for a genetics study Vanderbilt is currently doing.
Are you doing the script D2, one a week? Or your own D3? We found out that the script we got last time was D2 and we followed up on CPn Help about the difference between D2 and D3. You might find those threads of interest. Red seems to be snap-on the D3 topic. Blood for pancakes, seems like a fair trade?
Loriyas wrote:
The doctor mentioned that I would be doing this for another 2 -3 years which I was glad to hear as I have worried that he may decide I am better so should be done with this. I worried about this unnecessarily! He made it clear that you are not done with this in just a year.
Yup, you're not alone. Kim felt that way too. Heck, I felt that way too. When all is said and done, it's clear to me that these doctors know what they are doing and some of the details I think about are likely completely irrelevant, OMG! Did I say that? Seriously, isn't it great to feel the relief of knowing you get to experience die-off for 3 more years? Actually, it's very comforting to know that 1) you're wiping out pathogens and 2) you get to continue wiping out pathogens.
Loriyas wrote:
IWhen I first went to Vanderbilt last year this doctor mentioned that since I was considered a "mild" case I may not want to start abxi therapy until or unless I worsened. At this appointment he told me that in the study he is conducting (which I am not a part of) the results are not "spectacular" but that he is thinking it is because most of those patients have come to him after they have failed all other therapies, so their cases are much more difficult. So Vanderbilt's current thinking is that it is better to start abxi therapy earlier rather than later (thank you to all of you who encouraged me to get started right away last year).
I'm not sure which doctor you mean, but there are two that see Kim and the one that is not Sriram was about the same for us. I'm hesitant to think that it's a good or bad thing for doctor's at Vanderbilt to be swayed before something like a new paper has been released - I believe it was you who told me that a very solid approach is to go about trying to prove that your hypothosis is false. I'm so very happy for you that you started when you did. BTW, Kim's next appt is July 1.
Loriyas wrote:
I noticed that the doctor's demeanor was different from even the last appointment 6 months ago. He is not skeptical about this treatment any longer but rather trying very hard to learn and understand why it works for some and not for others. I took this as a very positive change. He told me to stay with all the same supplementsi that I have been taking, including NAC and vitamin D.
One speculation I have is this concept I have read about whereby an antibiotic is rated for a MIC and MBC and that these help you know how much you need to take to get either effect. A little slide show about MIC and MBC I continue to ponder after watching this about 4 times - does the amount of ABX each patient needs vary depending on the amount of bacterial load they carry? Thank you for your post and I'm really happy you had a good appointment. What did they say about your MRI's? Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
Ken
Regarding vitamin D-I specifically asked Dr. S. about this and he said it was D3. But I need to research it further because I thought it was D2. Did you get him to switch to D3?
Regarding which doctor suggested waiting to get started, it actually was Dr. S. So he has come a way with his initial thoughts.
Regarding my MRI- we didn't discuss it much. You know how those appointments go-you try to fit so much in during the time you are there. We just didn't spend much time on it. I only have one lesion that is larger than the others (most are small) and that one is unchanged. So that was pretty much all that was said about it.
Joined: Feb 10, 2006 Posts: 777 Location: Northern Virginia
Posted: Thu Feb 12, 2009 10:08 pm Post subject:
I think it's his intention to use D3, however the pharmacy said they only had D2 in the 50k iu gels. So it could be a simple communication thing like the sodium/calcium pyruvate questions last year. He was fine with us using the ones we get at the nutrition store so long as we were hitting at least 50k a week.
My impression, and it's just my own speculation and feeling, of his hesitance was that it's SOP for him given that he's still practicing Neurology and I think he's got to offer what's generally accepted first - especially if someone is not "out of options". I think he has to watch his back to ensure he doesn't become Howard Beale. Bad analogy, but you might get it the idea. There's someone at Vanderbilt somewhere that Dr. Sriram has to answer to; there's someone who allocates funds from which the MS center is funded. Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
Joined: Jun 18, 2004 Posts: 1723 Location: Bedfordshire UK
Posted: Fri Feb 13, 2009 7:28 am Post subject:
Very true, Ken. There are many other neurologists at Vanderbilt to start with and not all by any means will think that the CPn theory is right. Prof. Sriram's title might be Professor of Experimental Neurology but that doesn't give him the right to ignore all the other treatments.
Both sorts of vitamin D work, but D3 is just more bioavailable and D2 is a bit cheaper.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
I am finishing my 13th pulse today (Monday). Interestingly, this one has been somewhat more difficult than the last few. Yesterday I awoke with body aches, which I haven't had in some time (probably since sometime in the beginning of this protocol). This morning just didn't feel well, although the aches were gone. The aching actually left during the day yesterday. Just feel "blah" today. Definitely know that this is directly related to the Tindamax. So, just like the Forrest Gump movie-life (or CAPi protocol) is like a box of chocolates-you never know what you are going to get! (or what side effects!) Also, on Saturday my left leg felt weaker than it has for a while. It is back to normal (whatever that is!) today.
Doctor did call and is having me change my vitamin Di from 50,000 IU/week (which ended up being D2) to 1000 IU of D3/day. I will probably start that later this week.
One more pulse done!!!! (With the reaction of this pulse I am happy that I haven't gone to intermittent therapy. I didn't think I was ready-or even close-and this proves it to me)
Ken
Could be something more than reaction to Tindamax but I don't feel like it is. I don't feel bad like flu or cold or anything. My instincts say that it is the Tindamax doing its job. So that is okay-it is not so bad that I can't stand it. As I have said before, in a perverse sort of way it is a good thing-it reinforces for me that I still have something to kill and the antibiotics are doing their job.
Regarding the vitamin D-it is a big puzzle. Since others have posted having reactions to D3 I thought I would wait to start it until the end of the week. Then I can tell the difference between vitamin D reaction and antibiotic reaction. Plus I took the last weekly vitamin D at the end of last week so it should last until the end of this week. I will post if I experience anything with it.
Lori
Joined: Jun 18, 2004 Posts: 1723 Location: Bedfordshire UK
Posted: Tue Feb 24, 2009 6:18 am Post subject:
Funny thing about vitamin D since I was taking it at 4000iu a day for some time before I started on CAP. It did nothing to stop progression before and I felt nothing untoward afterwards. It has given me extremely strong bones, though which is quite useful for such a long-limbed person who had a habit of falling over in awkward places.
Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
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