Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
I've been trying to find some information on how those of us with HH are affected by Siderophilic bacteria, in other words is our rate of fatality higher than those with iron in the normal range. If so how much higher? I even wonder if most of the fatalities have high levels of iron.
We probably all know the dangers posed by Vibrio vulnificus but what level of increased danger, if any, do we have to other iron loving bacteria? This incl. Vibrio vulnificus, Listeria monocytogenes, Yersinia enterocolica, Salmonella enterica, Klebsiella pneumoniae and Escherichia coli.
The recent outbreak of Listeria in the US has renewed my interest in this.
A few months ago I tried to join the German HH forum, but have not been accepted me, I guess as I don't have a German email etc. "unt mein Deutsche is nicht so gut." I wanted to find out if anyone had looked into the link between HH and the ecoli outbreak in June that killed about 23 people.
In regards to these and other outbreaks. I guess a number of elderly people or those with other ailments may have been affected at a higher rate but were there an unexpectedly high number of HH'ers? Has the medical community bothered to check?
I now realise that my high iron levels were most likely the reason I was affected with diarrhoea/vomiting (almost always when overseas) while others were not despite having eaten exactly the same meal.
Do any of you have any info on these bacteria and HH?
We probably all know the dangers posed by Vibrio vulnificus but what level of increased danger, if any, do we have to other iron loving bacteria? This incl. Vibrio vulnificus, Listeria monocytogenes, Yersinia enterocolica, Salmonella enterica, Klebsiella pneumoniae and Escherichia coli.
The recent outbreak of Listeria in the US has renewed my interest in this.
A few months ago I tried to join the German HH forum, but have not been accepted me, I guess as I don't have a German email etc. "unt mein Deutsche is nicht so gut." I wanted to find out if anyone had looked into the link between HH and the ecoli outbreak in June that killed about 23 people.
In regards to these and other outbreaks. I guess a number of elderly people or those with other ailments may have been affected at a higher rate but were there an unexpectedly high number of HH'ers? Has the medical community bothered to check?
I now realise that my high iron levels were most likely the reason I was affected with diarrhoea/vomiting (almost always when overseas) while others were not despite having eaten exactly the same meal.
Do any of you have any info on these bacteria and HH?
I read an article a few weeks ago that claimed HH actually offered protection against some pathogens i.e. bubonic plague (black death) as the macrophages that transport the said pathogens to the bodies immune system can identify and begin fighting it have less iron in them, thus the pathogen cannot multiply as quickly.
I've not found any reliable study so far to back this claim up (in fact most say iron is increased in the macrophages), however other cells do indeed have reduced iron levels.
SO the situation is not as clear cut as I first suspected. I need to do more research but just don't have the time currently....... though Xmas day is always good!
Currently I take 2 fish oil caps (1200 mgms each) and 2 Red Yeast Rice caps (600 mgm each) daily. I make sure a few days before being phlebbed to drink a lot of fluids.
I've been in maintenance since 2003.
What has helped, is a few drops of Wild Oil of Oregano, daily. It's a known natural blood-thinner and people are advised NOT to take it alongside other blood thinners such as aspirin and warfarin, as the blood would then become TOO thin!
I was on coumadin (warfarin) because I had a port. That did not help at all. In fact, two ports clogged on me. No port now. Thank goodness.
After the second one clogged, my new hematologist (who was near retirement) said ports don't work well for phlebbing so I had it removed and I was very happy.
Now my current hemtologist won't put in a port because it's too risky. Can cause infection in the heart. The nurses there agree that I have the worse veins they've ever seen. Fortunately (for me and them LOL) I only get phlebbed 2-3 times a year.