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

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I can't picture spending the rest of my life like this

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I haven't read all the posts only the first few about fighting. One thing I want to mention is we need to fight smart not necessarily hard. As we know we can't push through it and speed things up our selves physically. We have to be smart fighters and research the crap out of this illness and put our own unique twist on it. We become our own doctors and hopefully find a good doc to work with us.

Lately I have thought to myself this is about the best its going to get. Work 30hrs a week and spend the rest of my time in recovery mode. The life I wanted isnt happening dam it! This is the life I have now so just deal with it. This lasts half a day and then im researching another way to try and improve. I guess im going down swingin.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi again. It's too much trouble to edit a post with my phone but I wanted to make sure you knew I was talking about Dr David perlmutter of Florida and Dr Terry Wahls the Dr who recovered from ms.

Their approaches are both integrative or functional.

I Googled perlmutter spect and found that he dx someone with lyme who's spect showed problems. I just Googled perlmutter spect and it was about the 6th entry down on the list.

good luck. X
 

Aerose91

Senior Member
Messages
1,400
Hi again. It's too much trouble to edit a post with my phone but I wanted to make sure you knew I was talking about Dr David perlmutter of Florida and Dr Terry Wahls the Dr who recovered from ms.

Their approaches are both integrative or functional.

I Googled perlmutter spect and found that he dx someone with lyme who's spect showed problems. I just Googled perlmutter spect and it was about the 6th entry down on the list.

good luck. X

I didn't know about them, thank you, I will definately research them. Are these doctors that I would have to go see or could have a phone consult? Traveling is proving pretty stressful on me
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I'm not sure if they do phone consults. They both have websites tho.

Or, if you have an integrative or functional doctor in your area they're probably familiar with these doctors protocols. I'm not sure if they'll be as good as these two tho.

btw, Dr Perlmutter has an interesting video about one of his patients who's Parkinson's walk disappears post glutathione iv. Great stuff.
 

SOC

Senior Member
Messages
7,849
I didn't know about them, thank you, I will definately research them. Are these doctors that I would have to go see or could have a phone consult? Traveling is proving pretty stressful on me
Doctors in the US by law cannot prescribe, and may not even be able to treat (I'm not sure about that part), unless they see you face-to-face at least once a year. Perhaps if you just want guidance, phone consults only might be possible.

Several of our ME/CFS specialists will do phone consults between once- or twice a year in-person visits. I don't know about Drs Perlmutter or Wahls.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
There are other medical professionals who use holistic methods for curing or managing chronic illnesses. The DAN (Defeat autism now) group have some great info on this. I can't remember the other holistic autism group names but if you Google autism look for the sites that promote healing not the ones who still think autism is still a mystery Of course
not everyone responds to treatment but they're the best we have for now.

The book Healing the 4 A's is good but possibly a little outdated by now. I'm drawing a blank on others.

fwiw I'm leary of all the supplement regimes promoted and will be relieved when this field is no longer confusing.
I prefer using whole foods at this point.

tc ... x