Update on Alex3619: in hospital but doing well

[maryb]

@alex3619
good luck with it all alex, hope they find where the problem is coming from soon.

 

[alex3619]

Coincidence I hope, but my liver has gone crazy in the last 6 months. My enzymes have always been well within normal values, but with no change in diet I all of a sudden have a fatty liver with inflammation only in the lobe that is closer to middle of the body.

They just did another Hepatitis panel on me, but it's my third one. Seems like it has been every 5 years they do one and it is always negative. I have no tattoo's, so I expect my last one is negative to. I hope

No tattoos is good advice for anyone, but especially anybody with ME. Tattoos are basically permanent vaccines. It permanently aggravates the immune system, the immune cells absorb the ink and hold it in place.

 

[maryb]

I didn't know that........so all these kids?? and those silly people who have their whole body tattooed ??? it doesn't bear thinking about - lets hope they all stay healthy.

 

[MeSci]

No tattoos is good advice for anyone, but especially anybody with ME. Tattoos are basically permanent vaccines. It permanently aggravates the immune system, the immune cells absorb the ink and hold it in place.

Do you have any links for this? As so many people are tattooed, it should be easy to research it.

I have a tattoo...maybe I'll start a poll here.

Done it - here it is.

 

[Valentijn]

My aunt had to get her screws and such removed eventually after she broke her ankle. She did titanium too, due to intolerance to nickel or some such. But even after the bone healed, the hardware was causing inflammation and pain. Everything was fine once it came out, and I think that healed pretty quickly. She has fibromylagia, but is very functional.

 

[alex3619]

Do you have any links for this? As so many people are tattooed, it should be easy to research it.

I have a tattoo...maybe I'll start a poll here.

Done it - here it is.

Actually I never researched it specifically, it was actually part of my biochem lectures at uni. The macrophages absorb the ink then become resident macrophages. I wonder what research out there actually supports this?

 

[Snowdrop]

It's good to know that the system is working well for you so far.
It's also good that they are checking on your liver function as well as considering your leg.
I hope all continues to go well and speedy for you Alex.

You may want to stay clear of large magnets for the time being.

 

[Graham]

All the best Alex.

I'll take your advice about tattoos. I was going to have one of a rabbit done on my head. (You can work out the punchline!)

If you need any more bad humour over the next few days, just let me know.

 

[heapsreal]

Alex is holding back, he is cured and wont tell us the treatment. I saw him running up this extremely steep hill near his place(queens road), he was running like a gazelle, an athlete. I saw him do this 2 days in a row, so he would smash the 2 day treadmill test??

 

[Sean]

All the best, Alex.

 

[alex3619]

Actually heapsreal mistates the case. He was the one who gave me the cure, but he wont tell me what it is!

 

[leela]

@alex3619 have you read this:

Although ferritin is widely recognized as being secreted by hepatocytes and
macrophages, its production by the mast cell [195] is far less appreciated. Hyperferritinemia
is quite common in mast cell disease [62],yet often it is misinterpreted as hemochromatosis

 

[alex3619]

@alex3619 have you read this:

Although ferritin is widely recognized as being secreted by hepatocytes and
macrophages, its production by the mast cell [195] is far less appreciated. Hyperferritinemia
is quite common in mast cell disease [62], yet often it is misinterpreted as hemochromatosis
(even in the absence of an identifiable HFE mutation) or, in the patient who has received red
cell transfusions for any reasons, hemosiderosis. [196] It can be tempting to attribute the
entirety of the observed hyperferritinemia in an MCAS patient to transfusional hemosiderosis
if the patient has any transfusion history, but two clues will suggest that a not insignificant
portion of the elevation in ferritin is of inflammatory origin. First, the serum ferritin level
often is considerably higher than would be expected purely from the degree of hemosiderosis
attendant to the extent of the transfusion history. Second, while the hyperferritinemia of
transfusional hemosiderosis marches in relative lockstep with the transfusion history, the
hyperferritinemia of inflammation (MCAS-driven or otherwise) is highly variable from one
determination to the next.
Mast cell disease has been clearly associated with obesity and with diabetes mellitus
(both types) [197, 198]; of note, both obesity and diabetes mellitus (both types) are now
clearly recognized as chronic systemic inflammatory conditions. Mast cells have been
identified as effector cells in metabolic syndrome, too. [199] Given the intimate involvement
of PGD2 and its metabolites in at least one key adipose management pathway [200], it is not
surprising that there is a surfeit of lipid abnormalities in MCAS, too. [63] Elevations in total
cholesterol and low-density lipoproteins, and decreases in high-density lipoproteins and verylow-
density lipoproteins, are not uncommon. [197] Hypertriglyceridemia, too, is common and
often is the starkest lipid abnormality.

This is a differential diagnosis I will have to have investigated of course. It is interesting they discuss iron levels and transfusion, and that in MCAS the iron levels do not reflect the degree of transfusion. My docs could make the same mistake with respect to haemochromatosis. My iron is going up too fast for haemochromatosis.

Essentially there are two issues. Iron absorption, and iron release. My water supply needs to be tested for iron. I need to be tested for mast cell activation. Yet mast cell activation does not create iron. It causes it to be released, primarily I suspect from the liver. Now the fact I am a haemochromatosis carrier might mean I have far more iron in my liver, so when released it creates a massive iron spike. This however should resolve with time, as the iron is finite, particularly if MCAS (or liver infection) is indentified and controlled.

If MCAS or an infection is the cause than treatment for haemochromatosis should work and lower my iron. If I have a source of ongoing iron poisoning though, treatment will only slow the problem down a little.

Questions, questions, always questions. The right question is important if you want the right answer.

I have elsewhere proposed that ME is also a PGD2 disorder, but possibly not from mast cells. Contrary to what immune focused research claims, brain focus research claims the brain is the main source of PGD2. Everybody makes it, every day, and its linked to our sleep cycles. PGD2 is what actually switches the brain off in sleep, all the other stuff including melatonin is about regulating PGD2.

So if we make too much in the brain, we are sleepy all the time, and parts of the brain might actually be asleep ... the whole brain does not have to sleep at one time. This would create holes in our brain function, and localized hypometabolism ... which is what we see. Of course this interpretation does not completely rule out mast cell involvement.

ME certainly involves biochemistry that would drive PGD2 synthesis, because of bad regulation of eicosanoids due to inflammation, decreased glutathione, nitric oxide and peroxynitrite. Of course having such biochemistry does not tell you where this happens, or even if it happens, only that it can.

Anyway, thanks for the article @leela. I will definitely be raising this issue, but I wonder if I am going to get hit with a side-diagnosis of hypochrondria, doh.

 

[leela]

but I wonder if I am going to get hit with a side-diagnosis of hypochrondria, doh.

sigh, this is always a risk, isn't it?
but it does make more sense than sudden spikey haemochromatosis, esp if you have any of the MCAS symptoms.

I have so many of them, and I have the carrier gene for Haemochromatosis. I wonder how many of us have both?

Meanwhile, do *not* tell me you are drinking unfiltered water, Alex! Get an AquaSana or something pronto, mister!

 

[alex3619]

I have water filters on and off, but I only drink tap water for coffee or cooking. Its not much. Most of my water is industrially filtered - I drink soda water. Filtered water has its own problems, as it demineralizes our intake and so sets us up for mineral deficiencies. All my water is boiled though, I hate tap water and want any possible pathogens removed. Of course when the water supply is contaminated this is a different story.

Decent water filters are impossible in rental apartments, you have to use small portable ones, you can't attach anything to anything.

There is something weird in my profile though. My blood is consistently low in sodium. I still do not yet know what this means. Despite high blood pressure, and partially because of my orthostatic intolerance and iodine deficiency, I eat lots of iodized salt (and the occasional sea vegetable). Yet my sodium is low. There are disorders that are implicated in ME that might predispose to this, but I have not checked this out in depth yet.

 

[leela]

I had this one, which just screws onto the faucet--except that so many places have non-standard faucets now.
https://tinyurl.com/lbodb4w
It's not an RO filter so it doesn't demineralize--for which btw you can make brine out of himalayan salt to remineralize.
Which brings me to salt consumption. Himalayan or Celtic sea salt, while more expensive, are a more rounded source of sodium than table salt. I'm feeling less inclined towards celtic salt (though I love it) since Fukushima.

I need a lot of salt too, and since I stopped using table salt, am kind of grossed out by it when I (very rarely) eat out.

Soda water can present problems, as tends towards acid and thus causes leaching of minerals from the bones.

 

[alex3619]

I drink soda water for my dry sore throat. Its the only thing that stops it aside from really chilled drinks or caugh lollies eaten by the pound.

Nothing can be screwed onto any of my faucets.

 

[Little Bluestem]

Really now Alex, that wonderful thingamy that those brilliant doctors put in your leg could not possibly be causing problems. You must be having false illness beliefs.

Bad news is they probably will want to do a liver biopsy. Oh well.

See what happens to people who complain.

 

[WillowJ]

Alex is holding back, he is cured and wont tell us the treatment. I saw him running up this extremely steep hill near his place(queens road), he was running like a gazelle, an athlete. I saw him do this 2 days in a row, so he would smash the 2 day treadmill test??

LOL, heaps. Are you sure this was the road by his place, not the one in Skyrim*?

*a video game: screenshot

 

[alex3619]

LOL, heaps. Are you sure this was the road by his place, not the one in Skyrim*?

*a video game: screenshot

You sure it wasn't here, its a pretty darn big hill:

http://inskyrim.files.wordpress.com/2012/01/screenshot140.jpg