This may get hit with some hostility but I’d like it to generate some positive discussion hopefully. I've been here a couple years and coming up on my own 5 year anniversary of health battles after being healthy my entire life.
I spent a lot of time, dozens if not hundreds of appointments, and a lot of money working through the roadmap at first after I crashed to try and figure out what was wrong.
There are a lot of things on the roadmap I ended up finding but it took multiple rounds of going back to look at the same potential diagnosis because the suggested testing wasn't the most accurate or detailed and this can be really confusing for newcomers.
I've mentioned before that I’m in medical school (barely still but trying to make it work) and I have been very blessed had an incredible amount of clinical exposure with some doctors that I became connected with who are integrative med/functional in their practice.
Through this I've gotten experience from multiple providers and have been exposed to hundreds of complex patients - MANY fitting the ME/CFS diagnosis.
I am definitely not trying to assert that my experience is above all others but after the hundreds of clinical cases I have been privy to, I truly believe that the current CFS roadmap is not the best guidance for the most common causes of CFS and it can be somewhat confusing.
In my experience when people have come in with a CFS diagnosis there’s a handful of things we have tended to find far and above anything else - these are in no specific order -
1. Mold/mycotoxin toxicity (2/3 homes in America have mold - this is incredibly common)
2. Heavy metal toxicity (typically mercury, gadolinium, or lead being the primary driver)
3. SIBO/SIFO
4. Lyme disease
5. High total toxic body burdens with sometimes dozens of environmental toxins being significantly elevated
6. CCI/AAI - this diagnosis is much more common than I initially believed if you start looking. I think a big driver of this is (1) cell phone and computer use with head forward posture, (2) automobile or sports trauma, (3) glyphosate causing damage to connective tissue.
7. Secondary adrenal insufficiency (severe) usually caused by burning the candle too hard in combo with some of the above factors usually playing a roll
Typically these are comorbid with EBV or other herpes/viral infections. Our immune systems are created to handle these infections, however, and these infections are typically well controlled once the immune system isn’t failing under other heavy toxic burdens.
If I could make any suggestions, they would be -
1. Updated roadmap with the more common causes of CFS (in my experience and from what I have learned being on private "provider only" message boards). I'd be more than happy to help.
2. Update testing for a number of conditions, namely the ones listed above. I myself would have found positive testing for several of them had I done the correct testing.
3. Update treatments. I have seen patients come from some of the more prominent practices that treat CFS where they throw antivirals at everything and no one gets better. I have seen these same patients respond to more alternative treatment modalities - some of whom where almost dead when they got to us.
I spent a lot of time, dozens if not hundreds of appointments, and a lot of money working through the roadmap at first after I crashed to try and figure out what was wrong.
There are a lot of things on the roadmap I ended up finding but it took multiple rounds of going back to look at the same potential diagnosis because the suggested testing wasn't the most accurate or detailed and this can be really confusing for newcomers.
I've mentioned before that I’m in medical school (barely still but trying to make it work) and I have been very blessed had an incredible amount of clinical exposure with some doctors that I became connected with who are integrative med/functional in their practice.
Through this I've gotten experience from multiple providers and have been exposed to hundreds of complex patients - MANY fitting the ME/CFS diagnosis.
I am definitely not trying to assert that my experience is above all others but after the hundreds of clinical cases I have been privy to, I truly believe that the current CFS roadmap is not the best guidance for the most common causes of CFS and it can be somewhat confusing.
In my experience when people have come in with a CFS diagnosis there’s a handful of things we have tended to find far and above anything else - these are in no specific order -
1. Mold/mycotoxin toxicity (2/3 homes in America have mold - this is incredibly common)
2. Heavy metal toxicity (typically mercury, gadolinium, or lead being the primary driver)
3. SIBO/SIFO
4. Lyme disease
5. High total toxic body burdens with sometimes dozens of environmental toxins being significantly elevated
6. CCI/AAI - this diagnosis is much more common than I initially believed if you start looking. I think a big driver of this is (1) cell phone and computer use with head forward posture, (2) automobile or sports trauma, (3) glyphosate causing damage to connective tissue.
7. Secondary adrenal insufficiency (severe) usually caused by burning the candle too hard in combo with some of the above factors usually playing a roll
Typically these are comorbid with EBV or other herpes/viral infections. Our immune systems are created to handle these infections, however, and these infections are typically well controlled once the immune system isn’t failing under other heavy toxic burdens.
If I could make any suggestions, they would be -
1. Updated roadmap with the more common causes of CFS (in my experience and from what I have learned being on private "provider only" message boards). I'd be more than happy to help.
2. Update testing for a number of conditions, namely the ones listed above. I myself would have found positive testing for several of them had I done the correct testing.
3. Update treatments. I have seen patients come from some of the more prominent practices that treat CFS where they throw antivirals at everything and no one gets better. I have seen these same patients respond to more alternative treatment modalities - some of whom where almost dead when they got to us.
- i.e. there is little to no mention of ozone/UVBI, IV nutrients, chelation, toxin binding protocols, liver detox phase 1&2 protocols, etc while there is a lot of time spent on things that are far more removed from common medical treatment