Even “Minor” Infections Can Cause Chronic Fatigue Syndrome (ME/CFS)

[Murph]

http://simmaronresearch.com/2017/07/giardia-chronic-fatigue-infectious-illness/

Cort summarises this paper and has a chat about giardia's role in me.cfs. Probably very relevant where there are outbreaks.

https://bmcimmunol.biomedcentral.com/articles/10.1186/s12865-017-0190-3

...

Giardia hasn’t historically ranked high as a potential cause of chronic fatigue syndrome (ME/CFS). Some anecdotal reports suggest that a Giardia outbreak may have occurred prior to the Incline Village ME/CFS outbreak in the 1980’s. More recently, Corinne Blandino’s severe, decades long case of ME/CFS – which originated with an exposure to Giardia at work – demonstrated how devastating a case of Giardia triggered ME/CFS can be.


Giardia is thought of as a minor infection – but it can have long lasting effects.

It wasn’t until city in Norway got exposed to Giardia in 2004, however, that Giardia, a protozoa, became one of the pathogens definitively linked with chronic fatigue syndrome (ME/CFS). Large studies (n=1254) examining the aftermath of the outbreak in a public water system in Bergen found that five years later, almost 50% of those originally infected still had symptoms of irritable bowel syndrome and/or chronic fatigue (post-infectious chronic fatigue).

“Other patients suffer a severe, long lasting illness, for which treatment is ineffectual, and even after the parasite has finally been eliminated, some sequelae persist, affecting quality of life and continuing to cause the patient discomfort or pain” (LJ Robertson et al, 2010)

Five percent suffered from fatigue severe enough for them to lose employment or be unable to continue their education. Interestingly, all had taken anti-parasitic drugs and all had apparently cleared the pathogen from their systems. Five years later, 30% were deemed to have an ME/CFS-like illness and almost 40% had irritable bowel syndrome (IBS).

• 
  Giardia hasn’t historically ranked high as a potential cause of chronic fatigue syndrome (ME/CFS). Some anecdotal reports suggest that a Giardia outbreak may have occurred prior to the Incline Village ME/CFS outbreak in the 1980’s. More recently, Corinne Blandino’s severe, decades long case of ME/CFS – which originated with an exposure to Giardia at work – demonstrated how devastating a case of Giardia triggered ME/CFS can be. Giardia long lasting effects Giardia is thought of as a minor infection – but it can have long lasting effects. It wasn’t until city in Norway got exposed to Giardia in 2004, however, that Giardia, a protozoa, became one of the pathogens definitively linked with chronic fatigue syndrome (ME/CFS). Large studies (n=1254) examining the aftermath of the outbreak in a public water system in Bergen found that five years later, almost 50% of those originally infected still had symptoms of irritable bowel syndrome and/or chronic fatigue (post-infectious chronic fatigue). “Other patients suffer a severe, long lasting illness, for which treatment is ineffectual, and even after the parasite has finally been eliminated, some sequelae persist, affecting quality of life and continuing to cause the patient discomfort or pain” (LJ Robertson et al, 2010) Five percent suffered from fatigue severe enough for them to lose employment or be unable to continue their education. Interestingly, all had taken anti-parasitic drugs and all had apparently cleared the pathogen from their systems. Five years later, 30% were deemed to have an ME/CFS-like illness and almost 40% had irritable bowel syndrome (IBS).

 

[msf]

I´m not surprised, mine was triggered by Yersinia Enterocolitica, which is also a ´minor infection´ for most people.

 

[Snow Leopard]

I wouldn't consider Giardia to be 'minor'.

Though I will also say, those pics above are hilarious!

 

[Forbin]

I wonder if, in combating a water-borne illness in the gut, some kind of persistent GI autoimmunity could be triggered.

 

[Londinium]

Thanks for the link, some lunchtime reading for me. The trigger for my illness was suspected to be Giardia which I picked up on a business trip to India. I was aware of the Norwegian outbreak and one thing I've wondered is whether the RituxME trial may have a higher-than-average number of participants whose ME/CFS was triggered by Giardia due to the location of the main hospital participating (Bergen).

(One of my doctors viewed Giardia as being likely to cause 'post-viral' syndromes - obvs not actually post-viral! - because, like viruses, parasites are good at hiding from the immune system and therefore may induce autoimmunity more readily).

 

[msf]

I wouldn't consider Giardia to be 'minor'.

Though I will also say, those pics above are hilarious!

Yes, if 50% of those who contracted Giardia (or who saw a doctor because of it) developed either ME or IBS, what would a major infection do? It reminds me of another Norwegian study that suggested that 10% of those diagnosed with Yersinia Pseudotuberculosis in an outbreak went on to develop ReA, although I imagine that is more common in Scandinavia than it is in other regions.

 

[Londinium]

From the paper:

From talking to individuals who did not wish to participate we learned that many of these experienced a substantial improvement in their condition between three and five years after the outbreak.

Fingers crossed for me people!

 

[AdamS]

This is super interesting. I had pretty much the exact symptoms of Giardia on a work trip in Gibraltar and i've always been sure that this event was the trigger for my decline into ME/CFS...I never felt the same since!

I thought this was quite relevant:

Finally, bacteria can act as an antigen and stimulate chronic proliferation of immune cells. H. pylori is thought to cause lymphoma because of constant stimulation of antigenpresentation leading to B cell expansion.

Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4047521/

 

[Art Vandelay]

I´m not surprised, mine was triggered by Yersinia Enterocolitica, which is also a ´minor infection´ for most people.

I'm starting to think that dientamoeba fragilis is a big factor in mine.

 

[Seven7]

I rally believe is not the infection. The infection is what we notice but the immune system is already down by then. Which is what you would called the subsetivity. For those of us that follow the immune system and have NK issues at least ( soubgroup) as you get better and struggle w infections then you realized the first infection is just part of it all. My humble opinion. Why we get relapses and plp like me w remitting relapses patterns

 

[jimells]

Help! Mast cells have taken over my brain! I see them everywhere!

Host defences against Giardia lamblia

Giardia spp. is a protozoan parasite that inhabits the upper small intestine of mammals and other species and is the aetiological agent of giardiasis.

It has been demonstrated that nitric oxide, mast cells and dendritic cells are the first line of defence against Giardia.

The role of mast cells in functional GI disorders

Functional gastrointestinal disorders (FGIDs) are characterized by chronic complaints arising from disorganized brain-gut interactions leading to dysmotility and hypersensitivity...

...recent observations reveal low-grade mucosal inflammation and immune activation, in association with impaired epithelial barrier function ["leaky gut"?] and aberrant neuronal sensitivity.

The mucosal inflammatory infiltrate is dominated by mast cells, eosinophils and intraepithelial lymphocytes in the intestine of FGIDs.

It is well established that mast cell activation can generate epithelial and neuro-muscular dysfunction and promote visceral hypersensitivity and altered motility patterns in FGIDs, postoperative ileus, food allergy and inflammatory bowel disease

My own illness started with a horrible food-borne illness. It seems to have triggered ME, which then triggered POTS, IBS, migraines, etc. With the recent additional symptom of itching when I stand, or shower, or do almost anything else, it was obvious to me that mast cells are likely involved now, and probably have been right from the beginning.

Perhaps the mast cells involved in fighting the food borne illness somehow triggered the ME, that is, Naviaux's Cell Danger Response, which causes the release of extracellular ATP, which activates mast cells, [1] which then causes more Cell Danger Response and release of even more extracellular ATP. That is looking like a really bad downward spiral, something all too many of us are familiar with.

I seemed to have recently stopped a really bad relapse punctuated by frequent episodes of hyperadrenergic POTS crashes by taking...an antihistamine! Who would believe that? Not me.

I started taking zyrtec 10 mg for the itching, along with low-dose trazodone (an adrenergic alpha receptor blocker, among other effects) and low-dose atenolol (a "cardio" selective adrenergic beta blocker) and the relapse has stopped, along with the POTS crashes. I still have severe limitations, but I haven't been back to the Emergency Room since April, a real plus.

The basic theory is simple enough. A big histamine release drops blood pressure, as anyone with anaphylaxis knows. The autonomic nervous system responds by increasing epinephrine/norepinephrine, [2] too much in my case, causing elevated blood pressure, palpitations, cold and clammy hands and feet, pale skin, tremors, constipation, can't urinate, difficulty speaking and thinking, etc.

The antihistamine prevents the release of excess epinephrine/norepinephrine, so no more POTS! I still have orthostatic intolerance sometimes, but not the tachycardia, etc.


[1] Extracellular ATP mediates mast cell-dependent intestinal inflammation through P2X7 purinoceptors

[2] Hyperadrenergic postural tachycardia syndrome in mast cell activation disorders

 

[RogerBlack]

I seemed to have recently stopped a really bad relapse punctuated by frequent episodes of hyperadrenergic POTS crashes by taking...an antihistamine! Who would believe that? Not me.

I started taking zyrtec 10 mg for the itching, along with low-dose trazodone (an adrenergic alpha receptor blocker, among other effects) and low-dose atenolol (a "cardio" selective adrenergic beta blocker) and the relapse has stopped, along with the POTS crashes. I still have severe limitations, but I haven't been back to the Emergency Room since April, a real plus.

I have recently been taking cetrazine hydrochloride (another second generation histamine) 10mg, two hours before bed, when its (small) sedative activities peak.

I seem perhaps more stable in avoiding several day long PEM. And there is always better sleep, which is nice.

 

[ryan31337]

My own illness started with a horrible food-borne illness. It seems to have triggered ME, which then triggered POTS, IBS, migraines, etc. With the recent additional symptom of itching when I stand, or shower, or do almost anything else, it was obvious to me that mast cells are likely involved now, and probably have been right from the beginning.

@jimells I think we have noticed our symptom crossovers before, but again you describe me to a T. The generalised pruritus also tends to flare in response to some meds/supplements, so I'm assuming its certain fillers in them.

I seemed to have recently stopped a really bad relapse punctuated by frequent episodes of hyperadrenergic POTS crashes by taking...an antihistamine! Who would believe that? Not me.

The basic theory is simple enough. A big histamine release drops blood pressure, as anyone with anaphylaxis knows. The autonomic nervous system responds by increasing epinephrine/norepinephrine, [2] too much in my case, causing elevated blood pressure, palpitations, cold and clammy hands and feet, pale skin, tremors, constipation, can't urinate, difficulty speaking and thinking, etc.

I also got some improvement from 20mg Cetirizine at night. Interestingly the immediate reaction to taking that was was relative hypotension (110/60, very low for me), but it levelled out & additionally I haven't had any significant hypertensive episodes since. Montelukast & Ivabradine have also been very helpful.

I'm about to trial Sodium Cromoglicate (mast cell stabiliser), i'll let you know if I get any further boost from that if you're interested?

 

[msf]

I'm starting to think that dientamoeba fragilis is a big factor in mine.

I haven´t heard of that one, has it been linked with any other illnesses?

 

[IreneF]

If you have a condition caused (or at least triggered) by Giardia, or if you have a mast cell disorder, would it still be considered CFS/ME?

 

[ljimbo423]

If you have a condition caused (or at least triggered) by Giardia, or if you have a mast cell disorder, would it still be considered CFS/ME?

I believe that anything that can cause intestinal permeability or worsen an already exiting intestinal permeability (leaky gut), can cause cfs/me. I think Giardia is one possible way, to get or worsen a leaky gut but there are many others. Mast cells play a big role in intestinal disease or dysfunction.

I am convinced that my cfs started as a result of dozens of courses of antibiotics over many years. They decimated most of my healthy gut bacteria, lead to severe dysbiosis (confirmed through testing), caused a leaky gut and my cfs.

 

[Forbin]

In trying to see if microbes might trigger autoimmunity in the gut, I was surprised to find that there is less certainty about Chron's disease being caused by autoimmunity. It seems as though one of the the more recent theories is that a weakened immune system is not attacking "self," but rather microbes or food in the gut, which it is unable to clear.

Crohn’s is a disorder of uncertain etiology. It has often been thought of as an autoimmune disease but research suggests that the chronic inflammation may not be due to the immune system attacking the body itself, but rather a result of the immune system attacking harmless virus, bacteria or food in the gut causing inflammation that leads to bowel injury.
http://www.webmd.com/ibd-crohns-disease/crohns-disease/digestive-diseases-crohns-disease#1

One of the microbes thought to be a cause of some cases of Chron's is Mycobacterium avium subspecies paratuberculosis (MAP)

https://en.wikipedia.org/wiki/Crohn's_disease#Cause

 

[Forbin]

Shortly after ME onset, I was tested for giardia - probably because I had mentioned drinking a sip of water from a waterfall while on a hike a few weeks prior to onset. I was under the youthful misimpression that "fast-moving" water was "safe."

The test was negative, however.

A couple of years later, I was diagnosed with chronic ulcerative colitis, only to have that diagnosis reversed after a month on azulfidine (sulfasalazine). On re-examination, the condition looked more like some kind of non-specific infection. I was asked if I'd been to Mexico, but I'd never been out of the country in my life.

I'd had increasingly severe bowel symptoms for over a year prior to this, so it seems unlikely that my gut symptoms were related to some kind of transitory "traveler's diarrhea."

Whatever it was, it seems as though azulfidine may have helped it. It's interesting that, in addition to chronic ulcerative colitis, azulfidine is also used to treat rheumatoid arthritis.

About azulfidine, Wikipedia says:

The mechanism of action is not clear, but it appears that sulfasalazine and its metabolites have immunosuppressive, antibacterial, and anti-inflammatory effects.
https://en.wikipedia.org/wiki/Sulfasalazine

 

[ljimbo423]

It's interesting that, in addition to chronic ulcerative colitis, azulfidide is also used to treat rheumatoid arthritis.

That is very interesting! I think as research improves and continues, they will find that a dysfunctional gut, triggers many diseases that are now considered "of unknown origin".

 

[lafarfelue]

I'm always utterly intrigued by these conversations. In a good way! I've been to so many places and been exposed to all kinds of bugs, viruses and bacteria, and had bone and joint sepsis/infections... all sorts of things. I had a slow onset, but I mean.. it could've been any of these one things that sparked off a slow cascade of system malfunction over years.

Though I will also say, those pics above are hilarious!

I thought exactly the same! I can't NOT see the eyes/faces in them.