Beyond
Juice Me Up, Scotty!!!
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Stumbled across this, looks fairly comprehensive:
https://sites.google.com/site/cfstestingandtreatmentroadmap/
https://sites.google.com/site/cfstestingandtreatmentroadmap/
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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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A comprehensive overview of CFS and treatments for it
- Thread starter Beyond
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xchocoholic
Senior Member
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Not bad ... They left out orthostatic intolernce tho and that's a huge problem for many of us. It also can explain all of the symptoms they listed above. Dr. Peckerman explains how hypoperfusion can do this.
I'd also start with the second step not the first one they listed. Food intolerances can be tested for and treated quickly.
The elimination diet can be started without any testing.
The listed celiac disease but not gluten intolerance. Celiac disease is seen as one complication of gluten. Theglutenfile will list the other complications and give studies to back these up. This info has been around since at least 2005. That's when I found it on the web. Doctors are notorious for not keeping up with the latest research.
And imho, I'd avoid the doctors they recommended. These doctors haven't solved CFS after 20 + years or changed their stories on what they think it is. An integrative doctor will look for all the possible root causes they listed. Mine ran most of those tests within the first few months of seeing her whereas my traditional doctors didn't even look. I actually have normal thyroid levels with Hashimoto's. And I over produce insulin which no one ever looked at.
tc ... x
xchocoholic
Senior Member
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- Florida
On the upside, this article clearly demonstrates what a wastebasket diagnosis ME/CFS is. Wastebasket meaning they've thrown everyone with these symptoms into a garbage can and never looked for root causes. IMHO, a dx is CFS is an excuse for lazy medical professionals not to look any further. All symptoms will be treated as part of CFS so you're head could fall off and they'd attribute it to CFS. 
And they'd get away with it ... tc ... x
And they'd get away with it ... tc ... x
Beyond
Juice Me Up, Scotty!!!
- Messages
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- Murcia, Spain
Yeah I agree with your points xchoholic, but its still useful for someone new on the block, as so much information its condensed there.
And certainty I agree with the waterbasket thing, thats easy to spot, its the same case-scenario than for IBS, those are diagnoses based in symptoms and not in causes.
Hey you should run a 24 h urine thyroid profile. I have hashis as well and my blood tests were "normal" whereas in the urine I have hypothyroidism (subclinical I guess). This is how I see it, if you have thyroid autoimmunity and its not being treated (antibodies not coming down) you will slowly go from subclinical hypo/hyper to full-blown hypo, which its the one blood tests show, as the thyroid gland gets destroyed. That takes aprox 20 years I have read.
http://www.eje-online.org/content/87/3/525.short
And certainty I agree with the waterbasket thing, thats easy to spot, its the same case-scenario than for IBS, those are diagnoses based in symptoms and not in causes.
Hey you should run a 24 h urine thyroid profile. I have hashis as well and my blood tests were "normal" whereas in the urine I have hypothyroidism (subclinical I guess). This is how I see it, if you have thyroid autoimmunity and its not being treated (antibodies not coming down) you will slowly go from subclinical hypo/hyper to full-blown hypo, which its the one blood tests show, as the thyroid gland gets destroyed. That takes aprox 20 years I have read.
http://www.eje-online.org/content/87/3/525.short
xchocoholic
Senior Member
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- Location
- Florida
IBS stands for insane bull shit ... ...
thanks for the thyroid info. It's been a year since my doc tested this for me. She ran these several years in a row to see how I was doing. So far no changes. YAY ! She asked if I wanted to try meds anyways but since my numbers really weren't off I declined. I'd already tried both thyroid meds and they made me feel awful. I use DLPA and Tyrosine tho.
My biggest problem is Orthostatic intolerance, both OH and POTS. I'm affected 24/7 upon leaving the supine position. I'm working on this tho. Mast cell meds help but I'm now experimenting with nicotine. (Yep, I'm aware of the consequences)
Most of my other symptoms are under control via diet, avoiding toxins, supplements and a couple of drugs. Most of the improvement happened 2 years post diet change but I'm a celiac with gluten damage to my brain that included gluten ataxia (resolved via diet) , white lesions on my brain (resolved via diet) and myoclonus (seizures have gotten worse).
FWIW, I've had high antibodies to most of the viruses mentioned but was told not to bother treating these. I was told that my immune system was just up regulated and that the data only indicated that. My reaction to dietary changes / reducing cytokines seems to support that.
From what I've seen the data on what's in our guts that's beneficial or harmful is still being debated. Sure when I had H pylori that had to go. And those parasites that showed up in my stool needed to be killed but other than that, I'm not sure we need to be playing so much with our gut microbia.
tc ... x
...thanks for the thyroid info. It's been a year since my doc tested this for me. She ran these several years in a row to see how I was doing. So far no changes. YAY ! She asked if I wanted to try meds anyways but since my numbers really weren't off I declined. I'd already tried both thyroid meds and they made me feel awful. I use DLPA and Tyrosine tho.
My biggest problem is Orthostatic intolerance, both OH and POTS. I'm affected 24/7 upon leaving the supine position. I'm working on this tho. Mast cell meds help but I'm now experimenting with nicotine. (Yep, I'm aware of the consequences)
Most of my other symptoms are under control via diet, avoiding toxins, supplements and a couple of drugs. Most of the improvement happened 2 years post diet change but I'm a celiac with gluten damage to my brain that included gluten ataxia (resolved via diet) , white lesions on my brain (resolved via diet) and myoclonus (seizures have gotten worse).
FWIW, I've had high antibodies to most of the viruses mentioned but was told not to bother treating these. I was told that my immune system was just up regulated and that the data only indicated that. My reaction to dietary changes / reducing cytokines seems to support that.
From what I've seen the data on what's in our guts that's beneficial or harmful is still being debated. Sure when I had H pylori that had to go. And those parasites that showed up in my stool needed to be killed but other than that, I'm not sure we need to be playing so much with our gut microbia.
tc ... x