Billt
Senior Member
- Messages
- 289
- Location
- New Orleans
Hi guys !! made it back to New Orleans after the trip last week. As all who have seen Dr Kaufman, I was impressed with all he did. My mind is slow too , so I am trying to go over all notes and we did use the recorder so that should help. Dr Kaufman was super nice and didn't offer false hope but thought since son was young and only had this for apx a year that he stood a good chance of being able to help. I can't thank evryone on here enough for helping and sharing. Without your input we may have never found OMI. Vasha, your systoms sound so close to his, got EBV at 23 and can't get over it. It was an exhausting trip for us but we made it. Lots and lots of bloodwork. SIBO positve, so maybe meds will start helping that right away. He did take Famvir before for 8 months and didn't help. He has tried Valtrex but not for long ( didn't agree with him ) so Dr is doubling the Famvir for now and go from there. Also going to start LDN. Dr spoke about what he was looking for in the blood test but I need to go to the recorder for that. Nk cells I believe is one, also recheck the EBV ( thinks it is still active ). All I can remember at the moment but will follow up as I find more. We do phone follow up for now in a few weeks, so we should know more then. Dr Kaufman really took his time with us and was extremely knowledgeable and super nice. Really seems to care. So we at least have a direction to start in, which no Dr here would do !! Praying this is the start of him getting better... Jeff, Ginger , Jess , SOC , Charlie1 , and others.....
I can't thank you guys enough for sharing all your journeys ,, as I will do. Be Well... Bill
PS I am sure I missed alot. I will fill in as I can, and if any has any questions,, just ask ..
Hi all, just wanted to update a little more with what meds we are going to start with. Still have a few weeks before phone follow up and bloodwork results but Dr Kaufman is starting him off with 1000 mg Famvir 2x a day , LDN starting at 1.5 and working up and Xifaxan 3 x a day for the SIBO. Hope he can tolerate all this. Will let ya'll know how he does ... !!!! Be Well.... Bill