• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

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

IreneF

Senior Member
Messages
1,552
Location
San Francisco
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.
What I mean is that since CFS/ME is a diagnosis of exclusion, if you know what caused it it wouldn't be CFS/ME anymore.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
What I mean is that since CFS/ME is a diagnosis of exclusion, if you know what caused it it wouldn't be CFS/ME anymore.

That's how I found out what caused my cfs, it was a process of exclusion.:) It took almost 10 years, countless thousands of hours of research and trying many different protocols, before I finally, fully realized that my gut was causing my cfs.

Many functional medicine doctors think cfs is caused primarily by "hidden" infections. Dysbiosis is considered a hidden infection and usually the first thing a well trained experienced functional medicine doctor will look for.
 

mariovitali

Senior Member
Messages
1,214
I thinκ the interesting point is here :

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).

Medication -> Liver Stress -> CFS
 
Last edited:

Art Vandelay

Senior Member
Messages
470
Location
Australia
I haven´t heard of that one, has it been linked with any other illnesses?

As far as I can tell, it's a controversial topic and has been poorly studied it but has been linked to colitis, CFS and IBS. There's much more information here:
http://www.badbugs.org/
http://www.cdd.com.au/pages/disease_info/parasites.html

My experience (and speculations) here: http://forums.phoenixrising.me/index.php?threads/could-this-be-a-parasite-warning-long-post.48377/
http://forums.phoenixrising.me/inde...parasite-warning-long-post.48377/#post-861546
 
Last edited:

Art Vandelay

Senior Member
Messages
470
Location
Australia
Help! Mast cells have taken over my brain! I see them everywhere!


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.

@jimells your post reminded me of this woman's experience with parasites, mast cells and zyrtec:

http://www.badbugs.org/MyStory_2.htm

http://www.badbugs.org/ConsequencesOfMisdiagnosis.html

(apologies for the brief post, I'm a little too brain fogged to write more today)
 

mariovitali

Senior Member
Messages
1,214
@Sushi

Please check the following link from the study :

https://www.researchgate.net/public...asis-Why_do_the_symptoms_sometimes_never_stop

Symptoms discussed in the text from medication used for Giardiasis :

Transient Elevation of Transaminases, Yellow discoloration of skin, Hepatitis

Please note that i repeatedly discussed here that CFS Patients should take a Fibroscan test. 2/3 people with CFS that had the test were found with Liver Fibrosis.

http://forums.phoenixrising.me/inde...w-up-to-2-21-17-research-update.49749/page-18

http://forums.phoenixrising.me/inde...-17-research-update.49749/page-17#post-857103

Apparently a user here called @tatt has being asking the same since 2014 (but that result only came up after i used Google search on Phoenix Rising site):



I'd also like to ask your view on the reliability of these tests since eg liver function tests are, I understand, only about 60% reliable. Shouldn't ME patients all be getting a fibroscan given the similarity of ME symptoms and those of liver disease?

http://forums.phoenixrising.me/inde...-dr-charles-shepherd.28065/page-3#post-428803
 

Londinium

Senior Member
Messages
178
Transient Elevation of Transaminases, Yellow discoloration of skin,

Interesting! I had both of these when first infected. My ALT was so high my GP considered having me admitted to hospital, but they regularised within a few days.

(Note however that high ALT can also be a sign of EBV infection)

I'm not sure I'm sold, personally, on the link to antiparasitics - I had bad ME-like symptoms before being given Metronidazole and my symptoms did improve somewhat after two courses of it.
 

mariovitali

Senior Member
Messages
1,214
@Londinium

48/60 people i talked to have had some kind of Liver Stressor (=EBV, Extended periods of Stress, Medication such as Accutane, Finasteride, Cipro, etc)

EDIT : I forgot to add in the List Cholestatic incidents, Gallbladder stones/removal and Liver issues in close family members.

The rest have had problems since kids but with symptoms pointing to impaired Liver function.

Basically i would strongly suggest that you identify what kind of Medication you took even 2 years before ME. Check whether this Medication is considered hepatotoxic.

Many patients have Cirrhosis without even knowing it. A very close relative of mine was recently found to have Liver Fibrosis Stage 3 without any symptoms or elevated Liver enzymes.
 
Last edited:

Apple

Senior Member
Messages
217
Location
UK
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. :rofl::lol::D

Wait... They aren't supposed to have faces in them ?! :eek: I thought they were cartoon protozoa :lol:

Seriously though, this is interesting. Nice to see a country actually thinking ahead and studying people following outbreaks etc. I think there so many potential causes of M.E that we will never have a definitive answer.

I had a Crypto infection as a child. I wonder if that played an early role in my illness. The gut being a large problem for me and others, and so many studies nowadays are showing that link between gut health and many immune related diseases.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Please check the following link from the study :
I read the link: yes, those drugs for giarda could cause problems....but, when you said "medication" (for parasites), you implied that all medications for parasites stress the liver, while only certain ones do. So I think the blanket statement:
Medication -> Liver Stress -> CFS
is a stretch.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
Care to follow that to its logical conclusion?
Ok. When I was diagnosed, I was tested for all kinds of other possibilities. If I had had one of them, even with exactly the same symptoms, I would not have been diagnosed w/CFS. CFS has no known cause, by definition. (Plenty of suspects but nothing definitive.) So if it was caused by Giardia, you would have a post-Giardia syndrome, but not CFS.
 

mariovitali

Senior Member
Messages
1,214
I read the link: yes, those drugs for giarda could cause problems....but, when you said "medication" (for parasites), you implied that all medications for parasites stress the liver, while only certain ones do. So I think the blanket statement:
Medication -> Liver Stress -> CFS
is a stretch.

Agreed, not all Medications could do this. I would strongly suggest that all people with CFS go through a list of hepatotoxic drugs and see whether their symptoms started even long after they took such medication.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4783956/

Of course this is just a hypothesis, not a claim of any kind.
 
Last edited:
Messages
10
@Londinium

48/60 people i talked to have had some kind of Liver Stressor (=EBV, Extended periods of Stress, Medication such as Accutane, Finasteride, Cipro, etc)

EDIT : I forgot to add in the List Cholestatic incidents, Gallbladder stones/removal and Liver issues in close family members.

The rest have had problems since kids but with symptoms pointing to impaired Liver function.

Basically i would strongly suggest that you identify what kind of Medication you took even 2 years before ME. Check whether this Medication is considered hepatotoxic.

Many patients have Cirrhosis without even knowing it. A very close relative of mine was recently found to have Liver Fibrosis Stage 3 without any symptoms or elevated Liver enzymes.
So is there a way to effectively cleanse or attempt to restore liver health? And if so, how?
 

RogerBlack

Senior Member
Messages
902
So is there a way to effectively cleanse or attempt to restore liver health? And if so, how?
@Londinium

48/60 people i talked to have had some kind of Liver Stressor (=EBV, Extended periods of Stress, Medication such as Accutane, Finasteride, Cipro, etc)

Note that Cipro is an antibiotic.
If giardia can cause CFS, and viruses can, it seems wholly reasonable that bacteria (for which Cipro will be prescribed) may.

There have been various scattergun analysis that would have found if liver issues remained in the CFS population.
Plus, what portion of people have in the normal population had 'Liver Stressors'.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
So is there a way to effectively cleanse or attempt to restore liver health? And if so, how?
Lots of people recommend liver cleanses but there isn't any evidence they actually help your liver.

AFAIK the best thing to do is to stop doing whatever is causing the damage in the first place. My liver function numbers rose when I was taking Valcyte and dropped when I went off. It wasn't really worrisome but I needed to monitor them. Valcyte has been the only drug that's helped me. I'm on it again so I will start getting tested again.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
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

Actual Myalgic Encephalomyelitis was first described in epidemics so it had to be an infective cause.

Other infections or insults may lead to a similar outcome in the body, we know that from disease like Parkinson's but infection, even subclinical infection is right up there as a cause. You could have an infection that messes up the immune system then another infection makes it obvious.

Like polio, only some people infected get a long lasting illness but something about the bugs in the epidemics made them more virulent. I have heard of many people who have developed ME after getting 2 simultaneous infections so maybe the fact that there was often a polio infection alongside whatever cause the Royal Free epidemic is why so many got ill. (The medical staff at the Royal Free thought it was flu that was felling them at first.)

Mithriel
 

mariovitali

Senior Member
Messages
1,214
Note that Cipro is an antibiotic.
If giardia can cause CFS, and viruses can, it seems wholly reasonable that bacteria (for which Cipro will be prescribed) may.

There have been various scattergun analysis that would have found if liver issues remained in the CFS population.
Plus, what portion of people have in the normal population had 'Liver Stressors'.

Liver tests such as Liver enzymes cannot rule out Liver disease. The gold standard for ruling out Liver disease is needle biopsy (from many areas of the Liver) and next best is Fibroscan. To the best of my knowledge, fibroscan has not been performed to CFS Patients.

Liver stressors can affect certain individuals not all of them (just like any other disease/condition affects susceptible individuals)
 

jump44

Senior Member
Messages
122
This thread is certainly relevant in my case. Within 6 months of sustaining a bad head injury I developed Prostatitis- I was never the same after that, the weird thing is the initial "infection" came with a weird facial/head pain as well. The "prostatitis" never went away and turned into "chronic pelvic pain syndrome".. and seemed to effect the whole body. My theory is my immune system was knocked down by the injury which allowed an infection which normally have never occured to take hold.