Hi this is my first post. I have been lurking for several months, not quite sure if I had ME/CFS or not.
For the last 3 1/2 years I have had a weeklong flulike illness about 4 times a year. This would be followed by about 6 weeks of a slow recovery and then about 6 weeks of what I called a remission where I felt about 75% normal. I was diagnosed about 2 years ago with neurally mediated hypotension and started Florinef. The family doctor, endocrinologist, cardiologist, and infectious disease doctors had no idea what was causing my flulike illness.
At that time I did not think I had CFS because I thought the diagnostic criteria implied that the fatigue had to be continuous for 6 months and I never had a 6 month long relapse. I resigned myself to living with this mystery illness.
Last fall I began researching my condition again. I watched Dr Montoya's YouTube lecture and began investigating CFS as a possibility again. I found one definition that included relapsing fatigue. I met the other criteria too like PEM etc.
This Monday my husband and I went to see Dr. Levine in New York City. I live about 4 hours away in PA. We drove there on Sunday and came home on Monday afternoon.
She confirmed that I do indeed have ME/CFS. She was easy to talk to and my appointment lasted about an hour. She drew several tubes of blood which she sent off for testing. She also sent me home with a test for SIBO and a stool test since I have begun having severe digestive issues in the last 6 weeks. It has made me exhausted and feeling sick a lot and has kept me from reaching a remission.
She follows Dr. Martin Lerner's protocol, which I had heard of but am not familiar with. I've been sick all week since I came home but am feeling somewhat better today so I plan to research that some more. She has used almost every drug I had read about from antivirals to LDN to rituxan and said she would develop a treatment plan based on my test results. I don't know that she uses Immunovir because she told me to start taking inosine.
She said that she would more aggressively treat my NMH during a relapse because that is when it is the worst. I took blood pressure readings - both resting and standing - during my last relapse & recovery to show her. She mentioned temporarily increasing my fludrocortisone, adding in midodrine, or prescribing saline IVs through my local doctor as possible options to help manage the symptoms. She immediately had me start sodium chloride tablets.
She said that when I reach my next remission I should get a Fitbit and keep my heart rate below my target heart rate. She said she would help me develop an exercise program that would be suitable for me.
I have read a lot of stories of people with ME/CFS both on and off this board. I know my case is mild/moderate and how tough it is trying to take care of a family at this level of illness. I've cried over the stories of those with more severe forms.
My hope is that some medication could help me enter a long-term remission or could improve my symptoms during a relapse and recovery.
I am very glad that I went to go see Dr. Levine. I finally have a doctor who is an expert on my illness! I'd be happy to answer any questions.
Karen
For the last 3 1/2 years I have had a weeklong flulike illness about 4 times a year. This would be followed by about 6 weeks of a slow recovery and then about 6 weeks of what I called a remission where I felt about 75% normal. I was diagnosed about 2 years ago with neurally mediated hypotension and started Florinef. The family doctor, endocrinologist, cardiologist, and infectious disease doctors had no idea what was causing my flulike illness.
At that time I did not think I had CFS because I thought the diagnostic criteria implied that the fatigue had to be continuous for 6 months and I never had a 6 month long relapse. I resigned myself to living with this mystery illness.
Last fall I began researching my condition again. I watched Dr Montoya's YouTube lecture and began investigating CFS as a possibility again. I found one definition that included relapsing fatigue. I met the other criteria too like PEM etc.
This Monday my husband and I went to see Dr. Levine in New York City. I live about 4 hours away in PA. We drove there on Sunday and came home on Monday afternoon.
She confirmed that I do indeed have ME/CFS. She was easy to talk to and my appointment lasted about an hour. She drew several tubes of blood which she sent off for testing. She also sent me home with a test for SIBO and a stool test since I have begun having severe digestive issues in the last 6 weeks. It has made me exhausted and feeling sick a lot and has kept me from reaching a remission.
She follows Dr. Martin Lerner's protocol, which I had heard of but am not familiar with. I've been sick all week since I came home but am feeling somewhat better today so I plan to research that some more. She has used almost every drug I had read about from antivirals to LDN to rituxan and said she would develop a treatment plan based on my test results. I don't know that she uses Immunovir because she told me to start taking inosine.
She said that she would more aggressively treat my NMH during a relapse because that is when it is the worst. I took blood pressure readings - both resting and standing - during my last relapse & recovery to show her. She mentioned temporarily increasing my fludrocortisone, adding in midodrine, or prescribing saline IVs through my local doctor as possible options to help manage the symptoms. She immediately had me start sodium chloride tablets.
She said that when I reach my next remission I should get a Fitbit and keep my heart rate below my target heart rate. She said she would help me develop an exercise program that would be suitable for me.
I have read a lot of stories of people with ME/CFS both on and off this board. I know my case is mild/moderate and how tough it is trying to take care of a family at this level of illness. I've cried over the stories of those with more severe forms.
My hope is that some medication could help me enter a long-term remission or could improve my symptoms during a relapse and recovery.
I am very glad that I went to go see Dr. Levine. I finally have a doctor who is an expert on my illness! I'd be happy to answer any questions.
Karen