• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    How to respond to my doctor...

    @Karena I feel so fortunate to be able to see both Dr. Levine and Dr. Natelson. So quick update. I had a follow up phone call with Dr. Levine yesterday afternoon. My labs came back positive for HHV6 and CMV. She's already ordered Valcyte for me to start immediately. She was short on time...so...
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    How to respond to my doctor...

    @Karena I don't think there is a simple answer to that. What @JaimeS said is definitely true. It's also a matter of the system forcing doctors to meet quota demands and see x number of patients per day...thus less time to read or go out of their way to study something. I've also realized...
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    How to respond to my doctor...

    Thank you to everyone asking for an update. I stayed with friends for nearly a week, and during that time I saw both Dr. Natelson and Dr. Levine. The long-term effectiveness of their care and treatments has yet to be seen - obviously - but if the only benefit of seeing them was the validation...
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    How to respond to my doctor...

    @sickntired771 Maybe I misunderstood... You're saying why not find a doctor in my city? Well, I live in Syracuse...and so far I'm finding gross lack of information in Syracuse. I'm rather not surprised. I've worked for 5 years in various sectors of the health care system here. At this point...
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    How to respond to my doctor...

    @sickntired771 Thanks so much for the advice. Dr. Natelson is listed here http://www.cfstreatmentguide.com/doctors-and-clinics.html and in other ME/CFS databases.
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    How to respond to my doctor...

    Thank you guys for your input... It definitely helps. And I don't feel so alone facing this shit. Just an update: I wrote my doctor back and told her that I won't be looking for treatment for the chronic stuff in my home area any more. I appreciate her as a GP, and will continue to see her...
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    How to respond to my doctor...

    To kind of respond to both @CantThink and @Old Bones... Thank you for the support and validating my own reactions to this GP. It makes sense to maintain a good relationship with this GP for general stuff. I know you're right... That no one else is going to "take responsibility" for this. It is...
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    How to respond to my doctor...

    @sarah darwins I'm in the U.S. I am considering looking at doctors in NYC. It would be a 7 hour train ride each way for me to go to the City. I'm in Upstate NY and on another thread members here have mentioned doctors in Albany or south of Ithaca, but both are over 2 hours of driving for me -...
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    How to respond to my doctor...

    @Old Bones I did ask her why she insists on sending me to a rheumatologist. Her reply was not satisfactory. She said that she had polled all the doctors in her clinic and the consensus is to send a patient with ME/CFS to a Rheumatologist. I completely agree with your assessment of...
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    How to respond to my doctor...

    Hey... I'm currently in dialogue with my GP through the patient portal. I've given her the IOM Clinician's Guide, links to info pages of Phoenix Rising, and I've referenced the Canadian Consensus. She thinks that ME/CFS fits, but won't diagnose me herself and insists that the best specialty to...
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    Question re: energy metabolism problems

    @Hope78 Danke! Thank you so much! Greetings to you in Germany - from New York. :-)
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    need a regular GP in upstate NY

    Thanks so much! She would be a bit of a drive (1.5 hours), but who knows. May be worth it. I feel so screwed right now because I don't have the money to go to doctors that don't take insurance. I'm barely working and paying bills. But all the doctors I've seen in the insurance network, no one...
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    Question re: energy metabolism problems

    Thanks to everyone who posted. My energy is too low for individual replies. @sarah darwins - Thanks for the article link. That makes so much sense! I realize I simply need to "research" here... Read things that have already been posted. But there's so much and it's overwhelming and tough to...
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    need a regular GP in upstate NY

    @jess100 Any luck finding a GP? I'm also upstate NY area, but new to PR. I'm also just learning about ME/CFS and at the beginning of looking for treatment/doctors. So just curious if you've found anyone helpful in the area. Thanks!
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    Question re: energy metabolism problems

    Hi, thanks. Should I have posted there instead? Or maybe this question should be in a different category? I really want to learn about/understand the metabolic piece of CFS... I read somewhere that there is an inability in the metabolic process for the cells to produce (or something - wish I...
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    Question re: energy metabolism problems

    Hello to everyone, I'm new here and not good at knowing where to start/how to post. I don't have an official CFS diagnosis, but whatever this illness is, I've had it for 2 years. I'm currently taking resources from this site to my primary doctor. I would like help understanding the metabolic...