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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. joanne218

    My visit to Dr Susan Levine NYC

    Thanks. I think I'll take the Valtrex for a month then start back on the LDN so I know how the valtrex is effecting me.
  2. joanne218

    My visit to Dr Susan Levine NYC

    I started the Valtrex (generic brand). Today was the third day. I feel like it might be helping but my symptoms are so on and off so I'm not sure yet if it is from the medicine or not. I'll keep you all updated.
  3. joanne218

    My visit to Dr Susan Levine NYC

    Thank you Sushi and SOC for the feedback. @SOC have you had much improvement with the Valtrex? I guess it's worth a shot for me to try it.
  4. joanne218

    My visit to Dr Susan Levine NYC

    I haven't started the Valtrex yet. I am nervous about side effects and I wanted to enjoy the summer before starting new meds and possibly feeling worse. I keep putting it off. I don't know why I just feel nervous to take it. Maybe someone could help me out. I don't know what's holding me back. I...
  5. joanne218

    My visit to Dr Susan Levine NYC

    When you say it would do you in, what symptoms might you get? Someone I know took 2 mgs, 2x a day and got really sick for a week then stopped all together. I haven't been feeling great so I am wondering if the LDN might have something to do with it. thanks :)
  6. joanne218

    My visit to Dr Susan Levine NYC

    I went to see Dr Susan Levine in New York City early in June. She asked me many questions about my illness. I've done a great deal of research so I didn't have a lot of questions. She did answer the ones I had. She was very nice. She seems to care about her patients. There were patients coming...