I'm opening a distinct thread on this condition because, although it has been touched on previously by certain autoimmune threads, especially by Keyhole, there is no dedicated location solely focusing in on this multi-system, multi-symptom disease that may have a susceptible prevalence as high as 20% among the population and yet for so many remains steadfastly un-diagnosed year after year.
I can personally vouch to this because for over a decade now a close family member slowly but surely developed a whole series of baffling and life altering symptoms that effectively by the age of 21 put a stop to this person's ability to live life in any normal way, a situation that has come to envelop the family in the daily concern over the cascade of extremes that has detrimentally impacted all involved. It is atypical for sufferers of this condition to (1) discover that their ever expanding symptom list leaves mainstream medicine completely baffled (2) after a period of banging their head off a brick wall, out of desperation start to go down routes with various holistic healers and nutritional experts (3) try a veritable ocean of supplements and focused protocols with either minimal, short lasting or no benefit at all (4) jump from one form of targeted treatment/approach to another with again no joy until finally (5) if lucky, and after years of failure and increasing debilitation, somehow stumble upon the issue of CIRS - and a whole new world opens up.
So what is CHRONIC INFLAMMATORY RESPONSE SYNDROME (CIRS)?
If we start with the symptoms. As mentioned above they are typified by being multi-system and multi-symptom within each system. Here is the list of my relative's which is by no means extreme for this condition once it gets fully up and running on all fronts.
All the following are acute:
So where to begin...
Thanks to one dedicated man - Dr Ritchie Shoemaker, M. D., the recognized pioneer and leader in this field, and from whose dedicated research and education effectively all other specialists in this field have evolved - we now have a road map to some from of understanding.
With more than 95% of CIRS sufferers it begins at gestation and birth with a genetic root. In simplistic terms you can be born with inherited mutations (alleles)...
... found on Chromosome 6.
Their importance is that they impact the expression of one's HLA (human leukocyte antigens) which are proteins—or markers—on most cells in the body and which specifically the immune system uses to see which cells belong in the body and which do not. And here comes the crux - because the issue of these HLA expressed alleles denotes or not a potential systematic vulnerability to an invasive biotoxin.
So at the heart of most CIRS cases lies:
In the most basic terms, we all have two immune systems; the Innate, which we inherit from our mother and which is present from birth and works as a basic and pretty blunt firefighter. Its job is to temporarily hold off any invaders whilst it collects specific information which it then passes on to the much more complex and nuanced Adaptive immune system (developed in the first few years of life) which then takes over the fight. This is the normal process for most. However, for those with the inherited HLA issue, if a certain biotoxin gets into the system and sparks the innate into action, because of the specific alleles present the innate is a poor / non existent antigen presenter, and therefore fails to pass off the problem to the adaptive system, becoming permanently stuck in on mode.
As a result, the body attempts to fight the invader with the equivalent of a flame thrower. The innate system raises inflammatory responses of an acute form all over the body that won't switch off, sparking a cascade of further problems as the various systems within the body attempt to adjust to cope with the influx of persistent and non appropriate inflammatrons. It is this growing cascade of imbalances, adjustments and self attack modes that characterizes CIRS - and why it is called Chronic - Inflammatory - response - syndrome. Its chronic (more than 6 months) widespread inflammation that leads to deleterious responses within the body in an effort to protect its major organs and systems from the source of the attack.
BIOTOXINS
All of this simply requires the initial intrusion of a biotoxin - a poisonous substance produced by a living organism that has entered the body.
The most common associated with this condition are:
It can also be set off by any one of a host of other nasties that one way or another decide to take up residence within the walls of Troy and spark an immune response.
It is the alien nature of both the living organism and its poisonous excretions that sparks the innate into action, which then gets stuck in on mode, which inflames the body, etc etc.
Once this cycle kicks off the body is both fighting a devilish intruder that it is ill equipped to deal with and attacking itself by way of a byproduct of its failed self defense.
This acute situation will over time end up involving almost all the principle functions of the body, in particular the brain gut relationship. That is why one of the leading figures in this field, Dr Andrew Heyman, calls the syndrome by a short hand - THE BRAIN ON FIRE.
The neurological implications and impacts are severe and in many cases are most heavily reflected in the symptom list. Severe and persistent inflammation in the brain has serious potential for long-term damage if not treated.
DIAGNOSIS/Testing
Obtaining a correct and patient specific diagnosis is absolutely critical. A skilled CIRS practitioner (essential) will first assess the existing symptoms and life history of potential exposure, ahead of ordering a series of highly specialized lab tests that can only be obtained from specific labs, mostly based in the USA. To note, however, one initial test can be done by anyone at home - and is highly recommended as part of the initial diagnostic phase - namely a Visual Contrast Sensitivity Test, a cheap ($15) online test:
Unfortunately around 10% of CIRS cases still pass this test, so a negative result accompanied by all or many of the symptoms listed should not be seen as confirmation that CIRS is not an issue without further lab testing taking place.
To note here are the system/symptom clusters that are used for the beginning of a CIRS diagnosis:
A yes to 8 out of 13 clusters with a minimum of 1 in each cluster is a strong indicator of possible CIRS.
In our instance we have moved to the testing stage with the following specific to my relative's initial step 1 investigation:
As a general indicator these tests alone came in at close to €4,000. There are a further 6 provisional tests on the advice list we have yet to do - and part of the process of treatment is also repeat testing - so be warned anyone who is recognizing signatures, there is no easy or cheap road to healing...
EDS ISSUE
As if things were not bad enough, there can be another complication in that around 25% of cases also include an Ehlers-Danlos syndrome (EDS) complication. EDS, sometimes still referred to as as hyper-mobility, and what Dr Heyman calls 'loosey-goosey' cases, adds to the condition by making such issues as lining connectivity in the gut hard to sustain / heal... we of course would have this issue in our case... thank you universe!
I'll stop here as that's quite enough from me the amateur - but below are some great additional resources:
1. A wide ranging and very important interview that Keyhole did with CIRS expert Dr Sandeep Guptaon his YouTube channel.
2. A series of 4 detailed lectures aimed at practioners given by Dr Andrew Heyman:
1. Introduction to Chronic Inflammatory Response Syndrome (CIRS)
2. CIRS - Neuroinflammation in Clinical Practice Part 1
3. CIRS - Neuroinflammation in Clinical Practice Part 2
4. CIRS - Biotoxin Treatment Protocol - An Integrative Model
It was digesting these last 4 videos that set us on the path to realizing this was likely what my relative was facing. For anyone interested, the only way my slow old brain could take in and make sense of so much overlapping complex information was to turn all 4 into a single narrative document with notes (the videos cover the same ground but in increasing detail so they can be hard to follow sequentially). I therefore attach the first 2 of these I have compiled as PDFs below (excuse the red bold everywhere and additional notes - that was my way of ramming the key information into my head with it all being so new!) They are included merely for guide/reference purposes only and should not be seen as definitive. I'll try and get round to finishing off a further document covering Heyman's particular road map for treatment and post here anon when I do.
And for anyone who reads this and starts to have alarm bells ringing, here follows a link to the practitioner we are working with called Louis Carder based in the UK 9and personally trained by Dr Shoemaker). Thus far she has been outstanding in every way and treats clients all over the world by means of online consultation. Trust me, she's top class. To reiterate it would be virtually impossible to access the complex chain of tests, diagnosis and treatments without such specialized support.
I'll maybe update as our road out of this challenge emerges...
I can personally vouch to this because for over a decade now a close family member slowly but surely developed a whole series of baffling and life altering symptoms that effectively by the age of 21 put a stop to this person's ability to live life in any normal way, a situation that has come to envelop the family in the daily concern over the cascade of extremes that has detrimentally impacted all involved. It is atypical for sufferers of this condition to (1) discover that their ever expanding symptom list leaves mainstream medicine completely baffled (2) after a period of banging their head off a brick wall, out of desperation start to go down routes with various holistic healers and nutritional experts (3) try a veritable ocean of supplements and focused protocols with either minimal, short lasting or no benefit at all (4) jump from one form of targeted treatment/approach to another with again no joy until finally (5) if lucky, and after years of failure and increasing debilitation, somehow stumble upon the issue of CIRS - and a whole new world opens up.
So what is CHRONIC INFLAMMATORY RESPONSE SYNDROME (CIRS)?
If we start with the symptoms. As mentioned above they are typified by being multi-system and multi-symptom within each system. Here is the list of my relative's which is by no means extreme for this condition once it gets fully up and running on all fronts.
All the following are acute:
- pervasive fatigue
- ongoing sleep deprivation and circadian rhythm instability
- headaches
- persistent brain fog
- low or non-existent concentration
- word finding difficulties
- short-term memory loss
- light sensitivity / pain
- sinus congestion
- sensitivity to fabrics and other skin issues
- Joint, bone and muscle pain
- upper back, neck and jaw pain
- visual blurring and 'snow' vision
- abdominal pain and ulcers
- alternating diarrhea and constipation
- digestive issues
- nausea and vomiting
- weight / muscle loss or unusual weight gain
- obsessions / negative thought loops / OCD
- depression
- anxiety
- mood disorders
- food sensitivities including high sensitivity to animal fats
- leaky gut & irritable bowl
- insistent need for urination
- numbness and tingling all over
- peripheral neuropathies
- weird muscle vibrations
- creepy crawly sensations
- balance issues
- fungal issues
So where to begin...
Thanks to one dedicated man - Dr Ritchie Shoemaker, M. D., the recognized pioneer and leader in this field, and from whose dedicated research and education effectively all other specialists in this field have evolved - we now have a road map to some from of understanding.
With more than 95% of CIRS sufferers it begins at gestation and birth with a genetic root. In simplistic terms you can be born with inherited mutations (alleles)...
... found on Chromosome 6.
Their importance is that they impact the expression of one's HLA (human leukocyte antigens) which are proteins—or markers—on most cells in the body and which specifically the immune system uses to see which cells belong in the body and which do not. And here comes the crux - because the issue of these HLA expressed alleles denotes or not a potential systematic vulnerability to an invasive biotoxin.
So at the heart of most CIRS cases lies:
- 1. A potential latent vulnerability within the immune system.
- 2. The potential for this to become expressed via the intrusion into the system of a biotoxin with the capacity to set this vulnerability in motion.
In the most basic terms, we all have two immune systems; the Innate, which we inherit from our mother and which is present from birth and works as a basic and pretty blunt firefighter. Its job is to temporarily hold off any invaders whilst it collects specific information which it then passes on to the much more complex and nuanced Adaptive immune system (developed in the first few years of life) which then takes over the fight. This is the normal process for most. However, for those with the inherited HLA issue, if a certain biotoxin gets into the system and sparks the innate into action, because of the specific alleles present the innate is a poor / non existent antigen presenter, and therefore fails to pass off the problem to the adaptive system, becoming permanently stuck in on mode.
As a result, the body attempts to fight the invader with the equivalent of a flame thrower. The innate system raises inflammatory responses of an acute form all over the body that won't switch off, sparking a cascade of further problems as the various systems within the body attempt to adjust to cope with the influx of persistent and non appropriate inflammatrons. It is this growing cascade of imbalances, adjustments and self attack modes that characterizes CIRS - and why it is called Chronic - Inflammatory - response - syndrome. Its chronic (more than 6 months) widespread inflammation that leads to deleterious responses within the body in an effort to protect its major organs and systems from the source of the attack.
BIOTOXINS
All of this simply requires the initial intrusion of a biotoxin - a poisonous substance produced by a living organism that has entered the body.
The most common associated with this condition are:
- Borrelia e.g. Lyme disease - from an infected tic or possibly spider
- Bartonella e.g. a genus of Gram-negative bacteria, normally an opportunistic pathogen
- Mold e.g. anyone one of a host of possibles including Aspergillus penicillioides, Aspergillus versicolor, Chaetomium globosum, Stachybotrys chartarum, Wallemia sebi, etc, etc
It can also be set off by any one of a host of other nasties that one way or another decide to take up residence within the walls of Troy and spark an immune response.
It is the alien nature of both the living organism and its poisonous excretions that sparks the innate into action, which then gets stuck in on mode, which inflames the body, etc etc.
Once this cycle kicks off the body is both fighting a devilish intruder that it is ill equipped to deal with and attacking itself by way of a byproduct of its failed self defense.
This acute situation will over time end up involving almost all the principle functions of the body, in particular the brain gut relationship. That is why one of the leading figures in this field, Dr Andrew Heyman, calls the syndrome by a short hand - THE BRAIN ON FIRE.
The neurological implications and impacts are severe and in many cases are most heavily reflected in the symptom list. Severe and persistent inflammation in the brain has serious potential for long-term damage if not treated.
DIAGNOSIS/Testing
Obtaining a correct and patient specific diagnosis is absolutely critical. A skilled CIRS practitioner (essential) will first assess the existing symptoms and life history of potential exposure, ahead of ordering a series of highly specialized lab tests that can only be obtained from specific labs, mostly based in the USA. To note, however, one initial test can be done by anyone at home - and is highly recommended as part of the initial diagnostic phase - namely a Visual Contrast Sensitivity Test, a cheap ($15) online test:
Unfortunately around 10% of CIRS cases still pass this test, so a negative result accompanied by all or many of the symptoms listed should not be seen as confirmation that CIRS is not an issue without further lab testing taking place.
To note here are the system/symptom clusters that are used for the beginning of a CIRS diagnosis:
A yes to 8 out of 13 clusters with a minimum of 1 in each cluster is a strong indicator of possible CIRS.
In our instance we have moved to the testing stage with the following specific to my relative's initial step 1 investigation:
- HLA (blood)
- Q100 CIRS (blood)
- NL Lyme Serology (blood)
- DS81- GI Map (stool)
- MD101 - Full Panel (nasal MaRCons)
- Swiffer House Environment Dust Test (PCR)
As a general indicator these tests alone came in at close to €4,000. There are a further 6 provisional tests on the advice list we have yet to do - and part of the process of treatment is also repeat testing - so be warned anyone who is recognizing signatures, there is no easy or cheap road to healing...
EDS ISSUE
As if things were not bad enough, there can be another complication in that around 25% of cases also include an Ehlers-Danlos syndrome (EDS) complication. EDS, sometimes still referred to as as hyper-mobility, and what Dr Heyman calls 'loosey-goosey' cases, adds to the condition by making such issues as lining connectivity in the gut hard to sustain / heal... we of course would have this issue in our case... thank you universe!
I'll stop here as that's quite enough from me the amateur - but below are some great additional resources:
1. A wide ranging and very important interview that Keyhole did with CIRS expert Dr Sandeep Guptaon his YouTube channel.
Expert Doctor Unveils the Hidden Epidemic of Biotoxin/Mold Illness (CIRS)
2. A series of 4 detailed lectures aimed at practioners given by Dr Andrew Heyman:
1. Introduction to Chronic Inflammatory Response Syndrome (CIRS)
2. CIRS - Neuroinflammation in Clinical Practice Part 1
3. CIRS - Neuroinflammation in Clinical Practice Part 2
4. CIRS - Biotoxin Treatment Protocol - An Integrative Model
It was digesting these last 4 videos that set us on the path to realizing this was likely what my relative was facing. For anyone interested, the only way my slow old brain could take in and make sense of so much overlapping complex information was to turn all 4 into a single narrative document with notes (the videos cover the same ground but in increasing detail so they can be hard to follow sequentially). I therefore attach the first 2 of these I have compiled as PDFs below (excuse the red bold everywhere and additional notes - that was my way of ramming the key information into my head with it all being so new!) They are included merely for guide/reference purposes only and should not be seen as definitive. I'll try and get round to finishing off a further document covering Heyman's particular road map for treatment and post here anon when I do.
And for anyone who reads this and starts to have alarm bells ringing, here follows a link to the practitioner we are working with called Louis Carder based in the UK 9and personally trained by Dr Shoemaker). Thus far she has been outstanding in every way and treats clients all over the world by means of online consultation. Trust me, she's top class. To reiterate it would be virtually impossible to access the complex chain of tests, diagnosis and treatments without such specialized support.
I'll maybe update as our road out of this challenge emerges...
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