posted
Ok, where do I begin? First of all I must apologize for spelling and grammer...my cognitive skills have disappeared.
I am on treatment for Lyme and Babs. Stared July 26,2012.
My treatment is: Mepron 2tsp perday Clarithromycin(biaxin), 500 x 2 Sulfameth 800 x 2 Cefuroxime 500x2 Tindamax 500 x 2 3 wks on,one week off Artemisinin 7 to 9 tablets per day Mon thru Fri (100mg each) Multi (plant based) Calcium and Mag B12 shots about every four days Milk thistle Sastassepe(wrong spelling)
Now for my blood work: WBC 2.5 RDW 15.5 High Neutrophils (absolute) 1.2 Low Cholesterol, total 247 (I am a vegetarian). Iron saturation 10 low Ferritin, serum 3513 high
Now I forgot what I was going to ask,duh!!! brain dead.
My hemo said, the high ferritins are probably from the Hyperferritin cataract syndrome, that I PROBABLY have. I have been trying to find someone that will test me,but they say if I had cataracts at birth and my ferritins are high, what more do I need.
In May,2012, my ferritins were 1488. My sister and mother also, have Ferritins around 950.
My LLMD and Hemo, don't seem to think its the abx. But why sure a jump? I don't even know if I am anemic...sure am weak,fatigue(not sleepy). Can hardly do anything.
My brain doesn't seem to be getting enough oxygen.
So sorry to blabber on.
What do you VERY knowledgeable people think? Maybe the artemisinin affects the ferritin.
When I started treatment my cd57 was 65 Thanks, inadvance. Atheana
Posts: 47 | From ft lauderdale florida | Registered: Aug 2011
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He did a bone marrow test, which showed no iron in the cells. i AM SOOOOOOO CONFUSED.
Posts: 47 | From ft lauderdale florida | Registered: Aug 2011
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posted
I have read that high ferritin indicates inflammation
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
That's the same thing my bone marrow biopsy showed - no stainable iron.
I've never had catoracts, though...but I too have the super high ferritin. The iron numbers were normal until I did one phlebotomy session.
After that, my iron numbers jumped and showed high. So strange!
According to my LLMD, inflammation doesn't elevate ferritin more than a few hundred points at most. He also told me he'd never seen anyone else with a ferritin as high as mine was (was over 3000, now down to 2600 after a phlebotomy session).
So I don't know what to think about all this either!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That is extremely high. It sure does sound like hemochromatosis. The babesia thrives on high iron so getting it down is really important. It can also affect your heart, brain and liver. Anyway it is dangerous and should not be ignored. It can give you brain fog, weakness, arthriitis, hypothyroidism etc. I would ask your doctor for phlebotomy until it is under control.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Ferritin is an acute-phase reactant so can be elevated without hemochromatosis in those with disease conditions and inflammation.
Ferritin is a better marker for low iron. When it's low, your body iron is sinking.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Does the hemotologist's diagnosis fit with your symptoms?
What is your hemoglobin?
I suggest you join the iron discussion list at Iron Disorders Institute and post your symptoms and tell them your relatives have the same high ferritin. They have some very knowledgeable people who may be able to help.
posted
Thanks so much terv. My Hemoglobin is 10.8 and hematocrit 33.7.
The Hemo knows nothing about Hyperferritin Cataract syndrome...He said,because I have high ferritins and had cataracts at birth,that's what it must be.
I am do dissappointed right now with Ducks!
Posts: 47 | From ft lauderdale florida | Registered: Aug 2011
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