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.
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.
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).
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.
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