Does anyone know if the iron overload from hemochromatosis have any effect on people with Lyme?
Posted by dan67 (Member # 20344) on :
My iron is elevated too. I think this may make us better off with Babesia but much worse off with chronic infections in general, as high iron promotes chronic infections. Not good.
Posted by kidsatlast (Member # 4308) on :
I was dx'd with hereditary hemochromatosis in 2004 and have been phlebotomized regularly to keep my iron levels low, but I cannot shake viral infections and I have been on abx for many years, otherwise my Lyme gets a lot worse. I have often searched for info on the connection between Lyme and HH but have found no literature on the connection between the two.
Posted by dan67 (Member # 20344) on :
Seems that high iron isn't the only contributor to chronic lyme, since many on this board have LOW iron and are still chronically infected...
Posted by terv (Member # 29410) on :
Do you have any damage from iron overload?
As stated on the irondisorders.org website excess iron can damage your body.
quote: Excess iron in vital organs, even in mild cases of iron overload, increases the risk for liver disease (cirrhosis, cancer), heart attack or heart failure, diabetes mellitus, osteoarthritis, osteoporosis, metabolic syndrome, hypothyroidism, hypogonadism, numerous symptoms and in some cases premature death. Iron mismanagement resulting in overload can accelerate such neurodegenerative diseases as Alzheimer�s, early-onset Parkinson�s, Huntington�s, epilepsy and multiple sclerosis.
If you have any of the above going on, it could be difficult for you to fight lyme. Someone with more lyme knowledge than me could explain better on why this is so.
I did read in the "Hidden Dangers of Iron" that the spirochete that causes lyme has evolved to bypass the need for iron and uses manganese instead.
Posted by dan67 (Member # 20344) on :
Interesting. I know i'll need to be doing therapeutic phlebotomies, soon.
Posted by terv (Member # 29410) on :
Do you know what your tsat% and ferritin are?
I go to NIH for my hemochromatosis and they wont phleb me until I am symptom and abx free for 2 months. I don't see that happening anytime soon so I went to another hematologist.
He ran a test and ferritin was about 50 and tsat% was 90. This doctor blamed high tsat% on something I ate but it was a fasting early morning blood test. Plus I know that when my iron levels are good, I can eat anything and it will be under 40%.
So I sit here imagining all this unbound iron flying throughout my body.
Posted by dan67 (Member # 20344) on :
What is the logic for not phleb until symptom and antibiotic free?
Posted by Lymeorsomething (Member # 16359) on :
Those who get the phlebotomies just have to take care not to send their iron too low (also a danger). Iron avidity can result.
Iron is very important for a lot of bodily functions so it's only evil if too high...
Posted by terv (Member # 29410) on :
NIH has an ongoing study for HH which I am in. One of the benefits of it for them is that they use our blood in their hospital. I obviously can't donate anymore even if I am symptom and abx free but from my email exchange with them I dont think they believe that.
I am trying to get to a point where in their mind I need a phleb and I will tell them that I am still on abx with symptoms. Hopefully they will either agree to phleb me and throw my blood out or give me a name of a hematologist. The one my last LLMD had me see didnt impress me.
Posted by dan67 (Member # 20344) on :
terv, study for HH? What's HH?
Posted by terv (Member # 29410) on :
Hereditary Hemochromatosis. Sorry for the acronym. Hereditary (genetic) hemochromatosis (HHC) an inherited disorder of abnormal iron metabolism.
I keep a chart of my serum iron, ferritin, tranferrin saturation, total iron binding capacity and hematocrit and date each time I am phlebotomized. These numbers are kept in range by the phlebotomies and my hemotologist said that since we caught the diagnosis early, that I have a normal life expectancy despite the HH, as long as I keep it managed.
Many doctors are not familiar with the management of this disorder so I have to remind them not to give me supplements without checking the ingredients list for iron, which I must avoid.
Some foods such as breakfast cereals are fortified with iron which is bad for my condition since I already absorb too much iron from regular foods.
Terv, I suggest that it would be a good idea to go on the Iron Disorders website where they have a list of doctors who specalize in HH since there is so much misinformation out there. It is best to get started on the deironing process as soon as possible to minimize damage to your heart and liver where the iron collects.
There are practice guidelines for MD's treating HH on a subscription website called "Up to Date" which many hospital and medical libraries have access to for free. It is really worth reading what the treatment is supposed to be. I would print it out and take it home.
Posted by dan67 (Member # 20344) on :
I just posted this on another thread. Any ideas?
"I have high iron and my doctor wants me to give blood to lower it. However, I've read that higher iron can hold of Babesia. Is this true? Will lowering iron make my babesia flare? Up till now, my babs symptoms have been easy to control - I'm afraid that might change? Any ideas?"
Also, what is transferrin saturation? I have one on my test that says "iron saturation," is that the same thing?
Thanks.
Posted by oldcookie (Member # 31629) on :
Thanks to all for your your info re: HH/iron overload. Much helpful.
Posted by terv (Member # 29410) on :
KidsatLast,
Iron Disorders is such a great site. I have been to the irondisorders website for find a doctor. Unfortunately instead of a list of doctors, it says to "check with the local treatment centers and ask for the name of physicians who are writing orders for your particular iron disorder".
I have been deironed since 2007. NIH did the deironing. I am hoping that I can get a doctor's name from them. Or maybe I will go post on the iron disorders mailing list.
You are correct that I need a doctor that specializes in HH. I will check out the "Up to Date" website.
dan67,
labtestsonline.org has great explanations for lab tests. I am fairly certain that iron saturation is the same thing as TSAT%.
Below is the page for hemochromatosis which has a tsat link