Article: Another Pathogen for CFS: Giardia Outbreak Causes CFS Outbreak in Norway by Oceanblue

Article: Another Pathogen for CFS: Giardia Outbreak Causes CFS Outbreak in Norway b

You can view the page at http://forums.phoenixrising.me/content.php?551-Another-Pathogen-for-CFS-Giardia-Outbreak-Causes-CFS-Outbreak-Norway

 

I also had lab confirmed Giardia. Maybe someone could make a poll here to give and estimate of how many of us did have Giardia.

Sushi

 

Hi Sushi

That's very interesting - did your fatigue start with the Giardia infection or was it later? Not sure how to set up the poll you suggest but it's a good idea.
thanks

 

Hi, Cort.

I would be interested to know what was used to treat these cases of Giardia. If they used metronidazole (Flagyl), I think that may have contributed to the development of ME/CFS in those who were genetically susceptible, because metronidazole produces oxidative stress and oxidizes glutathione. http://www.ncbi.nlm.nih.gov/pubmed/6515129

Best regards,

Rich

 

Hi, Cort.

I would be interested to know what was used to treat these cases of Giardia. If they used metronidazole (Flagyl), I think that may have contributed to the development of ME/CFS in those who were genetically susceptible, because metronidazole produces oxidative stress and oxidizes glutathione. http://www.ncbi.nlm.nih.gov/pubmed/6515129

Best regards,

Rich

Hi Rich and Ocean Blue,

Yes, that is a very good question as to what drug was used. I was given Flagyl and noticed an immediate increase in symptoms. It was years back so I don't remember exactly what the symptoms were, but I remember thinking that the effect of the drug was far worse than the Giardia. And yes, this contributed to the slow downward slide.

Sushi

 

Hi Folks:
I was on Flagyl for four months. I had picked up C diff in the hospital. And though the c diff was 'gone,' a severe fatigue set in, and after a few weeks off the Flagyl, a total bedridden crash.

 

Hi, I had a suspected case of giardia in the early 70s. It was never confirmed by lab tests though. Bye, Alex

 

Hi, I had a suspected case of giardia in the early 70s. It was never confirmed by lab tests though. Bye, Alex

A test early in my ME/CFS indicated I had giardia in my system...I got it backpacking when I was a teenager - but seemed to recovery...

Oceanblue - what about testing those people 3 years later for Giardia...wouldn't that be a good thing to do? Maybe their bodies never fought off the protozoa?

 

Hi, Cort.

I would be interested to know what was used to treat these cases of Giardia. If they used metronidazole (Flagyl), I think that may have contributed to the development of ME/CFS in those who were genetically susceptible, because metronidazole produces oxidative stress and oxidizes glutathione. http://www.ncbi.nlm.nih.gov/pubmed/6515129

Best regards,

Rich

Thats interesting....might the treatment have contributed to the problem?...it wouldn't be the first time..

 

Hi Sushi

That's very interesting - did your fatigue start with the Giardia infection or was it later? Not sure how to set up the poll you suggest but it's a good idea.
thanks

We could the poll on the forums and put a link to it from here...As I noted I had a Giardia infection when I was a teen and then tested positive for it after I got CFS....I wonder if it later contributed to it...I do remember years of messy bowels when I was healthy...its fascinating stuff..

 

Nice point there Cort, "condition caused by these pathogens looking similar on the surface but very different below ?" It's back to the old nut - persisting infection or long term altered/impaired immune function. I suspect most would have had GI issues at some stage.

 

thanks Oceanblue for this.. it was very interesting and well written.

 

I would be interested to know what was used to treat these cases of Giardia. If they used metronidazole (Flagyl), I think that may have contributed to the development of ME/CFS in those who were genetically susceptible, because metronidazole produces oxidative stress and oxidizes glutathione. http://www.ncbi.nlm.nih.gov/pubmed/6515129

I'm pretty sure metronidazole was used to treat the initial infection. You can find links to all the papers I reference in the original blog. Is there anything more recent about metronidazole and oxidant stress than the 1984 paper you mention? I'm always a bit sceptical about old results that don't appear to have been replicated, particularly where the abstract doesn't give sample size. I did a quick google search and found a 2010 paper showing metranidazole reduced oxidative stress in the gut (it didn't look at other organs).

Oceanblue - what about testing those people 3 years later for Giardia...wouldn't that be a good thing to do? Maybe their bodies never fought off the protozoa?

I'm pretty certain the CFS cases were tested to exclude chronic Giardia; another study I mentioned found that after 7 months very few of the chronic fatigue cases were due to ongoing Giardia infection.

Nice point there Cort, "condition caused by these pathogens looking similar on the surface but very different below ?" It's back to the old nut - persisting infection or long term altered/impaired immune function. I suspect most would have had GI issues at some stage.

Giardia is a GI infection so they all had such a problem initially. The 3-year follow-up study found 46% had IBS and those who had fatgiue were even more likely to have IBS so yes, it looks like most of the CFS patients had GI problems post Giardia.

Sorry some of these answers are a bit vague ('pretty sure' etc). I'm making a few quick comments before visitors arrive and will be offline for a day or so.

ps thanks taniaaust1 too!

 

Not to scaremonger but Metronidazole (in high doses) crosses the blood brain barrier and may (in some patients) cause neurotoxicity resulting in encephalopathy as well as peripheral neuropathy

http://www.neurologyindia.com/artic...volume=59;issue=1;spage=4;epage=5;aulast=Puri

Edit to add :

Most of the literature appears to suggest that any detectable cerebral lesions disappear once Metronidazole treatment is stopped.

 

I also had lab confirmed Giardia. Maybe someone could make a poll here to give and estimate of how many of us did have Giardia.

Sushi

There's a poll here

 

Is it too late to incorporate a question about what drug was used to treat it? I think Rich's comment about Flagyl may be significant. For me the treatment was worse than the infection in relation to long-term health.

Sushi

 

I was treated for H. pylori in 2007, possibly with Flagyl. I had been sick, including gut troubles, since 2003. After the H. pylori treatment my gut was *really* messed up for years until I discovered a 'miracle cure': grapefruit seed extract.

I'm still careful about what I eat, but my gut works pretty good most of the time. I'm grateful for that relief.

I'm much sicker now than when I had the possible Flagyl treatment, but corelation isn't causation.

I used to do a lot of backpacking. In the 90's I started using a filter after hearing a lot of warnings about Giardia in New England, supposedly being spread by moose, as I recall. In the unlikely event I am ever well enough to return to the backcountry, I'll buy a new cartridge for the water filter.

 

I do worry that more pathogens or 'triggers' appear to be contributing to a diagnosis of CFS all the time. I know we could look at it the other way round and suggest that more of the triggers are being discovered and that it's a good thing. But I am concerned that when it comes to research and treatments the 'pool' is increasingly being muddied.

There was an article I posted yesterday about a Signalman winning compensation for personal injury. Chemical fumes - toxins - had triggered his diagnosis of CFS. Whilst the award was obviously welcomed and I don't doubt his diagnosis - as let's face it we are all diagnosed based on symptomology - it just gave me pause.

If a research project was underway and they were gathering patients for the cohort - to what extent could the 'trigger' for the diagnosis affect/influence the results? I mean if you are studying viral causes then surely you would exclude all those patients for whom there has been no confirmed viral trigger/pathogen, right? But this isn't what happens in so far as I can tell.

Patients are gathered and their diagnosis reconfirmed based wholly on symptomology and the criteria selected. They don't specifically ensure that only, e.g. EBV patients are enrolled for an EBV study, do they? No they seem to gather a CFS cohort and then go digging for EBV.

And what about treatments? Say you are running a clinical trial for Rituximab - the approach appears to be the same: gather a cohort of CFS patients and give them the medicine en-masse. There's no 'Let's check to see if they have actually had a confirmed viral-infection or have an immune profile consistent with viral infection.

We have the ability to separate into little 'pots' many of those with a shared diagnosis and I can't help but be concerned that this is not adequately being done and is negatively impacting both on treatment and research results. What if a diagnostic marker is being missed because in a large multi-trigger cohort it simply isn't applicable to a significant proportion? What if there is something unique about Giardia or, say, bacterial triggers that doesn't apply to, say, Coxsackie B or Parva-virus or EBV?

I think the larger the 'pot' becomes the more work is needed potentially at the screening stage prior to recruitment for research. Else results might be determined as statistically insignificant.

Layman speaking of course

n.b. do you think you could link to the relevant research in your article please? Although I think it was this one from Norway? http://www.meassociation.org.uk/?p=10317

 

@richvank/Sushi
Yes, metronidazole (Flagyl) was the first line of treatment of Giardia in the outbreak. In fact, the excess metronidazole prescriptions in Bergen were used to estimate total Giardia (as opposed to lab-confirmed) cases:

based on metronidazole prescription data it has been estimated that 2500 people were treated for giardiasis during the outbreak.(7)

@Cort
Hmm, they didn't explicitly say the CFS cases were Giardia-free so I've emailed the authors to ask. An earlier study looking just at GI symptoms concluded:

Cryptic chronic giardiasis was not the explanation for the persistent symptoms.

Also this

We have previously shown that all referred treatment refractory cases after the Bergen outbreak eradicated the parasite, evaluated by seven negative stool samples up to four weeks after treatment [11].

I do worry that more pathogens or 'triggers' appear to be contributing to a diagnosis of CFS all the time. I know we could look at it the other way round and suggest that more of the triggers are being discovered and that it's a good thing. But I am concerned that when it comes to research and treatments the 'pool' is increasingly being muddied.

I like to think it is a good thing. Could be multiple triggers leading to a common pathway: the Dubbo studies 3 found different triggers (EBV, Ross River Virus and Q Fever) all lead to the same symptom pattern.

If a research project was underway and they were gathering patients for the cohort - to what extent could the 'trigger' for the diagnosis affect/influence the results? ...

Patients are gathered and their diagnosis reconfirmed based wholly on symptomology and the criteria selected. They don't specifically ensure that only, e.g. EBV patients are enrolled for an EBV study, do they? No they seem to gather a CFS cohort and then go digging for EBV.

Fortunately, most of the studies eg Dubbo and Peter White's on EBV are proper prospective studies where the infected patients are recruited first and followed to see how many develop CFS.

That's not the case for the Norwegian Giardia study as it was a wholly unplanned outbreak, but for many CFS cases the fatigue started within weeks of the Giardia symptoms (giving 1.9% rate of CFS 2.5 years after the outbreak) and the remainder of the cases still had Giardia symptoms when the fatigue started (giving the higher rate of 5%). Any cases where Giardia symptoms had resolved before fatigue started were excluded. So there does seem to be a very strong link between the initial Giardia infection and subsequent CFS.

And what about treatments? Say you are running a clinical trial for Rituximab - the approach appears to be the same: gather a cohort of CFS patients and give them the medicine en-masse. There's no 'Let's check to see if they have actually had a confirmed viral-infection or have an immune profile consistent with viral infection.

We have the ability to separate into little 'pots' many of those with a shared diagnosis and I can't help but be concerned that this is not adequately being done and is negatively impacting both on treatment and research results. What if a diagnostic marker is being missed because in a large multi-trigger cohort it simply isn't applicable to a significant proportion? What if there is something unique about Giardia or, say, bacterial triggers that doesn't apply to, say, Coxsackie B or Parva-virus or EBV?

I think the larger the 'pot' becomes the more work is needed potentially at the screening stage prior to recruitment for research. Else results might be determined as statistically insignificant.

You make a good point about the danger of lumping together potentially different illnesses. Most researchers (even psychiatrists) agree the illness is heterogenous ie multiple diseases and an infectious vs gradual onset would be a really interesting split to see in studies. I'm not sure it would be possible to divide by the initial infection as I'm pretty sure it's very rarely known. My onset was infectious but by the time I saw the Post-Viral Fatigue specialist he said I probably had PVFS but it was no longer possible to determine anything about the original infections from blood tests etc - and that was well before a formal CFS diagnosis. So I'm not sure how feasible it will be to divide up patients into little pots, though it would clearly be valuable.

ps Sorry, not sure what happened to the links in this article (which I can't edit), you can find them in the original blog - and the main study is the one you mention.

 

I think this was a study done by proponents of CBT and the used diagnostic criteria were the oxford criteria. So many participitants were not real CFS patients but chronic fatigue patients. (correct me if Im wrong)