Ok, sorry to throw another one out here but I saw this on my other group and I want to know what my MedHelp group are finding. Someone from my FL group mentioned that they had high Ferritin levels (storage of iron) and it was Lyme. When I was in Texas mine was high and there is a name for it Hemochromotosis (sp?) It is usually a genetic condition, so the hematologist did a genetic study and it came back positive and the treatment for that is to get a pic line put in for those with bad veins like I have and , and have blood taken out and keep taking it our until the Ferritin levels go to normal. So I took blood out once and it went to normal, meanwhile the "Texas hematologist" did not clean the pic line, it got infected and it had to be taken out, not an easy feat on someone like me to even get onet in. I called the hospital who put it in for her and they called her and chewed her out and now she cleans them but too late for me. My doctor sent me to another hematologist who, without any testing, said I dont have hemochormotosos. Anyway, the other group said it is part of Lyme anyone else have it or heard of it?
That's not a topic I've looked into, but I'm vaguely aware that donating blood on a regular basis can perhaps lower iron levels -- that doesn't require a PICC line. Your doc should be able to recommend a course of action.
The normal blood test may have been taken at a time when your body was just at a low cycle --- dunno.
I don't recall anyone posting here (at the Lyme site) about it, but you could search in the 'search this community' box at the upper right of the screen, just below the advertisement.
Thanks I will. They mentioned it on my other support group and was shocked. I was told the did the genetic test and it came back positive and then another hematologist said I don't have it. I never thought it was related to Lyme until they mentioned it on the other group. Another fun thing to add to the list....
I have high ferritin levels in some tests - it comes and goes, sometimes the level is perfectly normal, sometimes very high.
I asked my doctor about hemachromatisis and he said I definitely don't have that. (Not sure how he could tell as he didn't do the genetic test).
I am sure it must be a Lyme thing.
When it is high, the doc advises that I avoid iron rich foods till it goes down, as it is fairly harmful to the organs to have free iron in the bloodstream.
Thanks for letting me know. What I don't understand is how my genetic test came back positive, I had blood taken out once and it has been normal ever since. I think you are right, it had to be the Lyme.
I wonder if the genetic test was simply a false positive? All blood tests have a certain rate of error. It might be worth asking to repeaty it just so you can be sure. If you do have hemachromatosis, I think it does need to be treated properly.
They are both relevant but they seem to suggest the opposite should be the case with lyme disease.
I cannot find anythig that would explain high free iron (which is very harmful) but normal storage iron (ferritin).
If you find anything relevant to this, could you let me know please?
I will let you know. My LLMD just did a bunch of blood work and included ferritin in there just to see what it is. The part that gets me is it must be a million to one odds that at the same time i developed the high ferritin, lupus, brain lesions, vaculitis, hyshimotos and on and on at the same time when I never had any of it before. I think it must be the lyme.
Lyme -- what a tricky beast! Yes, I would wait to see what the Lyme doc comes up with before losing any more sleep over what all these other ailments could mean. Try not to worry in the meantime -- sending you all good thoughts!
Hi, I have Lyme,which I feel is now in remission. My ferrin levels are 1445.
Iron, total is normal,Iron binding capacity and saturation are also normal.
My Hemotologist thinks I have Hperferritinemia cataract syndrome(since I was born with cataracts).
I am having my mother and sister checked for their ferritin levels.
I recently had a bone marrow biopsy, which showed a have low grade myelodysplasia(formerly known as prelieukemia).Sorry for all the incorrect spelling, my thinking is so muddled.
I feel weak,joint pain, Tinnitus and brain fog.
My Doc feels I have been barking up the wrong tree with the Lyme.
I recently took a iron supplement and felt so bad I couldn't even drive.
Hope we can help each other with all this info. I am so confused!
Sorry to hear about all you have been through and are still going through --
No one here is medically trained that I know of -- I'm certainly not -- but in your situation, I would find a Lyme specialist for a second opinion. I'm sure your hematologist is wise in his/her specialty, but Lyme and other diseases often carried by the Lyme ticks (called co-infections) have far-reaching effects in the body that docs not wise in the ways of Lyme do not perceive or understand. .
A quick google search tells me (at WebMD): "Hyperferritinemia-cataract syndrome is an extremely rare genetic disorder characterized by the early onset of cataracts associated with persistently elevated levels of ferritin in the blood plasma. Ferritin is a protein that binds to iron and is used as an indicator of the body's iron stores. Cataracts are the only known complication associated with this disorder...."
That sounds like what your hematologist is focussing on, which is reasonable in the hematology world. I take it to mean that your ferritin levels are high, and the doc suspects it is genetic, which is why your relatives are being tested, to see if it is indeed genetic.
However, I also found this on Wikipedia, under 'Ferritin': "If ferritin is high, there is iron in excess **or else there is an acute inflammatory reaction in which ferritin is mobilized without iron excess**. For example, ferritins may be high in infection without signalling body iron overload. ... As ferritin is also an acute-phase reactant, it is often elevated in the course of disease. A normal C-reactive protein can be used to exclude elevated ferritin caused by acute phase reactions...."
Therefore if you have an acute infection (which Lyme is), then it can produce high ferritin levels in your blood, because your body is mobilizing (stirring up) the stores of ferritin in reaction to an infection.
Is the doc also testing you for C-reactive protein, which the body produces to fight infection? If yours is high, then it may well indicate that you have an infection (like Lyme).
If your doc does NOT test you for C-reactive protein, I would ask why, since it could change the diagnosis.
===>>> HOWEVER here is a complicating factor: were you tested for Babesiosis? That is a disease related to malaria and is often carried by Lyme ticks.
Babesia bacteria use up iron in the body, so it seems like your iron levels would be lower rather than higher if you had babesiosis. However, because of your genetic condition, there maybe some confusing cross-reactions going on that need to be considered. Many docs do not know about babesiosis or believe it is so rare that they need not consider it.
I personally had Babesiosis with Lyme, and it is one miserable combination. The tests for Lyme are completely different from the tests for Babesiosis, and so is the treatment (different meds).
Okay, so this confusing mess of facts means there are lots of questions on the table, and I would talk to my doc about the possibility of babesiosis. If he will not test you for it, I would find a Lyme specialist who will do so.
The interplay between Lyme and babesia and your genetic situation needs someone who understands all three. My Lyme doc was, by training, a hematologist, so he had the bases covered, but if your hematologist is not a Lyme doc, then he may not have the right orientation to Lyme/babesia to understand all the possibilities.
In summary then: your ferritin level could be high because of a genetic condition, or because your body is reacting to an infection like Lyme. If you also have Babesiosis, which often comes along with Lyme, then it could be confusing the diagnosis because Babesia uses up iron in the body, at the same time that infection is causing your body to release iron -- all this on top of your possible genetic situation.
I would ask the doc if he has tested you for Babesiosis and if not, to please consider doing so.
And I would also consider finding a Lyme specialist for a second opinion. If you email to
contact [at] ilads [dot] org
and tell them what area you live in or can get to, they will send you names of Lyme specialists.
I am so sorry. I had a bone marrow biopsy and all I can say is OUCH! My hematologist did a genetic test and said it came back positive for....my brain is a fog and I have no memory but it's a blood disorder where ferritin levels are high. I saw another Dr who, without any tests said I don't have that blood disorder. I am positive for Lyme and Bart's and with so many other symptoms I am sure this is all from those illnesses. I think if you don't have an LLMD that you should find one because I and many others on here have been misdiagnosed with so many other illnesses when it has been Lyme and/or Bart's all along. Btw, ringing in the ears is one of the many symptoms of Bart's. You may want to be tested for that also. Good luck and keep us informed.
I would also recommend you find a good LLMD for treatment. If you currently have muddled thinking, joint pain, tinnitus, and feel weak, then you are dealing with an active infection, not a remission. The severity of a Lyme infection can fluctuate over time, so there is a tendency for it to worsen and then get somewhat better, and then worsen again.
Most doctors know very little about Lyme. Some have been given outright misinformation that leads them to believe it's only about sore knees and a rash. Your symptoms do sound a lot like Lyme. Find yourself a good LLMD so that you can start treatment and get better.
I don't know if I thanked you for all the wonderful info you gave me on the subject of High ferritin levels.
I have found a dr in D.C. so will be going up that way Aug 20.
I hope she will be able to figure out this situation. I think your right about babs, iI have all the sym.
I am so sick of sweating.
Hemochromatosis is a tricky, and really complicated, genetic issue. The thing about iron is this, as much as WE need it--all other life needs it too. So, when we get sick, our body tried to "lock up" iron in ways that keep the infectors from being able to use the iron for their own benefit. Lyme, being the tricky bugger that it is, affects all of our systems to make our bodies as "homey" as possible, so I wouldn't be surprised if it can affect iron excretion--in other words, causing your body to sequester and hold on to iron instead of getting rid of the extra that you don't need.
Hemochromatosis, in its own wierd way though, works to kill off infectors. The "disease" causes you to hold iron in your blood, but the white blood cells called macrophages that "eat up" the bad guys have very LITTLE iron--thus helping them kill off infectors. It is really complicated.
Bottom line--if you are a carrier of the gene (which would mean you have the genes but not the "disease") it wouldn't surprise me if the infections you have triggered a response in you that would seem "abnormal" to others.
As for the genetic test--the fact that you have the gene, doesn't mean, necessarily that you have BOTH alleles required for you to have the active disorder. It would mean that, like in this case, your body may have an abnormal reaction to infection, or you may sequester iron at times, but it wouldn't be a chronic condition.
Those with full blown hemochromatosis have to give blood at least bi-monthly or they get very ill, achy, and even jaundiced. If your blood work is normally "normal" than you are likely a carrier, not an "affected" individual.
Sorry--I'm a nerd on this one. I think I meantioned a book called "Survival of the Sickest" to you before. It has a lot of history and detail about hemochromatosis and the genetics and evolutionary factors that have led to the gene pool we have today. It is by a Dr. Sharon Moalem if you are interested.
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