jpcv
Senior Member
- Messages
- 386
- Location
- SE coast, Brazil
Hi everyone
I have just returned from NY, where I had the opportunity to meet Dr Levine.
I want to share with you my experience of travelling a long distance with ME and thoughts regarding the medical appointment.
Travelling that far was not easy, I think it would be very hard for me to do it without my brother´s help.
I strongly advise anyone traveling long distances by plane to ask for a wheelchair ,even if you do not need one on a day to day basis. It helped me a lot , mainly during immigration process, so I didn´t have to stay on a long line-I have hypotension and I avoid long lines at all costs.
I was treated very well by Dr Levine and I recommend her for anyone willing to go to NY.
We discussed superficially most of the literature and also she told me about the experience of other clinicians who treat this disease and their views regarding their favorite treatments ( I think they did some kind of pool in a recent meeting at Bateman Horne Center , in Salt Lake City.).
My diagnosis was ME/CFS ( with elevated IgG CMV titers and HV6) + hypotension + CIBO + MTHFR mutation plus a background of chronic hep B
She recomended Valcyte,some aminoacids/suplements based on Naviaux metabolomics data, Metylb12injections ,LDN,and some more detailed investigation of autonomic disfunction and CIBO.
I hope this brief report helps, I can give more details if someone is interested.
I have just returned from NY, where I had the opportunity to meet Dr Levine.
I want to share with you my experience of travelling a long distance with ME and thoughts regarding the medical appointment.
Travelling that far was not easy, I think it would be very hard for me to do it without my brother´s help.
I strongly advise anyone traveling long distances by plane to ask for a wheelchair ,even if you do not need one on a day to day basis. It helped me a lot , mainly during immigration process, so I didn´t have to stay on a long line-I have hypotension and I avoid long lines at all costs.
I was treated very well by Dr Levine and I recommend her for anyone willing to go to NY.
We discussed superficially most of the literature and also she told me about the experience of other clinicians who treat this disease and their views regarding their favorite treatments ( I think they did some kind of pool in a recent meeting at Bateman Horne Center , in Salt Lake City.).
My diagnosis was ME/CFS ( with elevated IgG CMV titers and HV6) + hypotension + CIBO + MTHFR mutation plus a background of chronic hep B
She recomended Valcyte,some aminoacids/suplements based on Naviaux metabolomics data, Metylb12injections ,LDN,and some more detailed investigation of autonomic disfunction and CIBO.
I hope this brief report helps, I can give more details if someone is interested.