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Please help: extreme ME with objective abnormalities

Messages
3
I am posting this on behalf of my son:

I am suffering from extremely severe but also atypical ME with objective idiopathic abnormalities. I have been unable to stand or feed myself for 15 months and I simply cannot get to hospital for further investigation.

Three years ago an alternative healthcare practitioner gave me herbal antimicrobials. As a result I crashed from what was apparently prodromal ME into serious illness. The antimicrobials caused extremely foamy urine. When I stopped the antimicrobials the foamy urine declined but never went away. This has been tested for proteinuria numerous times (the usual cause of foamy urine), including a 24-hour collection (the gold standard test), but has always been negative.

A year after my initial crash I discovered I have elevated ALT ( a liver enzyme that should be 0-40). All known causes have been ruled out. After a month-long period when the foamy urine was considerably elevated, my ALT went from an average of about 100 to around 350. The foam declined and my ALT fell back to around 100.

I have found some anecdotal reports online of others experiencing the same problem. Diagnoses include ME, Lyme and Candida whilst others have no diagnosis. The common denominator is non-proteinuria foamy urine that was triggered by either herbal antimicrobials, prescription antiobiotics (e.g. Azithromycin) or certain probiotics with bactericidal activity against Gram-negative bacteria (I have also noticed that probiotics can worsen this symptom).

The common endpoint that I share with most of you is sympathetic cytotoxicity. In rare instances when this abates I improve extremely quickly. Eighteen months ago I had a Neutraval test that showed extremely elevated Taurine, apparently this is produced by the liver and is the form used in energy drinks. I wonder if this could be linked to the above and be the cause of my cytotoxicity? Does anyone have any ideas or advice?
 

Kati

Patient in training
Messages
5,497
Hi @LizO

Welcome tot the the forums.

Liver enzymes can be elevated for many reasons and the herbals/supplements intake can be one of them. Viral involvement like EBV can be another reason, and it has been my case early on in my disease.

Sending best wishes!
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
I am posting this on behalf of my son:

My ALT is high too. I was worried about liver damage so looked it up. It appears that high ALT is often associated with alcohol damage (oh dear!). However my AST/ALT is less than 1, which indicates non-alcohol damage.

It seems that these liver changes are likely caused by Lyme disease (which I have). From my reading of papers by Horowitz (2003) and Soloski (2014) Lyme disease causes increased markers for liver damage. The damage caused either directly by bacterial liver infection, or by systemic cytokine release. The most common markers increased are GGT and ALT.
 

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Messages
3
Hi @LizO

Welcome tot the the forums.

Liver enzymes can be elevated for many reasons and the herbals/supplements intake can be one of them. Viral involvement like EBV can be another reason, and it has been my case early on in my disease.

Sending best wishes!

Hi Kati,

Thanks for your reply. His GP thought it might be something he was taking, so he stopped everything for 6 months and it was at the end of that period that he had the spike in ALT. EBV didn't seem to play a significant role in his aetiology. We will keep this in mind though!

My ALT is high too. I was worried about liver damage so looked it up. It appears that high ALT is often associated with alcohol damage (oh dear!). However my AST/ALT is less than 1, which indicates non-alcohol damage.

It seems that these liver changes are likely caused by Lyme disease (which I have). From my reading of papers by Horowitz (2003) and Soloski (2014) Lyme disease causes increased markers for liver damage. The damage caused either directly by bacterial liver infection, or by systemic cytokine release. The most common markers increased are GGT and ALT.

Hi Mel

We've come across a few papers suggesting Lyme can cause high ALT. However it doesn't seem likely that it is caused by Lyme, as Lyme does not cause foamy urine. The ALT seems to be directly attached to the foamy urine. which his NHS CFS/ME immunologist thinks we really need to get to the bottom of in particular. We are wondering if it might be a similar, undocumented bacterial infection - maybe in the blood or localised somewhere (gut? liver? sinuses? CNS?). He needs to get to hospital for further testing, but he is too ill.
 
Messages
4
Hi, LizO - any updates? If the foamy urine began after herbal antimicrobials, perhaps the release of lipopolysaccharide induced inflammation. I hope you've been able to find a cause by now.