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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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CURED CFS/ME? PLEASE SHARE YOUR STORY HERE.

undcvr

Senior Member
Messages
822
Location
NYC
My CFS is viral based. I have a whole bunch of herpesviruses in me that I fight to contain each day since I have had them. I find that taking BHT and then giving your body some time to detox aka clear out the havoc wrecked since day 1 is the best way to go. All protocols are supposed to last a lifetime.

The only positive thing I can say about this is that after having lived with it for so long I am now more sensitive to the symptoms and can be more poractive instead of reactive towards it.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
My CFS is viral based. I have a whole bunch of herpesviruses in me that I fight to contain each day since I have had them. I find that taking BHT and then giving your body some time to detox aka clear out the havoc wrecked since day 1 is the best way to go. All protocols are supposed to last a lifetime.

The only positive thing I can say about this is that after having lived with it for so long I am now more sensitive to the symptoms and can be more poractive instead of reactive towards it.

What's BHT?
 
Messages
30
Location
Atlanta, GA
I'm 100% recovered; however, I consider myself in remission.

I had CFIDS under the canadian criteria for 4 years --from 2006-2010-- I got it after being in a coma and having septic shock. I had every symptom in the book-- fatigue, insomnia, post exertional malaise, dizziness, brain fog, yeast infection, wired and tired, tingling in nerves, light sensitivity, total disability etc.) My only pathogens are viruses (EBV, HHV6, Parvo). After 3 years on Famvir and Valtrex, (and numerous supplements), I did a 10-month course of Valcyte at the end of 2009. After the course was over, I got better and better every month until I felt 100% normal in mid-2010. Since then, I have been doing really well.

I only consider myself in remission because I ran a half marathon in 2012, and I had a brief resurgence of insomnia, yeast infection and brain fog. I took that as a warning and went back on antivirals and stopped running long distances, and the symptoms went away. Since then, I've been doing great, but I did have to go back on Cortef for Adrenal fatigue issues (VERY different than CFIDS-- only can't wake up in the morning, as opposed to the systemic fatigue and all encompassing problems of CFIDS), and I now take cortef so I can exercise.

I see Dr. Kogelnik to stay on top of things. I think I will take antivirals and cortef for the rest of my life.
 
Messages
4
I thought GROUNDING cured you? Hope you are well!

I'm 100% recovered; however, I consider myself in remission.

I had CFIDS under the canadian criteria for 4 years --from 2006-2010-- I got it after being in a coma and having septic shock. I had every symptom in the book-- fatigue, insomnia, post exertional malaise, dizziness, brain fog, yeast infection, wired and tired, tingling in nerves, light sensitivity, total disability etc.) My only pathogens are viruses (EBV, HHV6, Parvo). After 3 years on Famvir and Valtrex, (and numerous supplements), I did a 10-month course of Valcyte at the end of 2009. After the course was over, I got better and better every month until I felt 100% normal in mid-2010. Since then, I have been doing really well.

I only consider myself in remission because I ran a half marathon in 2012, and I had a brief resurgence of insomnia, yeast infection and brain fog. I took that as a warning and went back on antivirals and stopped running long distances, and the symptoms went away. Since then, I've been doing great, but I did have to go back on Cortef for Adrenal fatigue issues (VERY different than CFIDS-- only can't wake up in the morning, as opposed to the systemic fatigue and all encompassing problems of CFIDS), and I now take cortef so I can exercise.

I see Dr. Kogelnik to stay on top of things. I think I will take antivirals and cortef for the rest of my life.