posted
Hi guys, Having a bone marrow biopsy tomorrow, because my Ferritin levels are 1445. I do not have Hemochromatosis,(so Hemo dr said). He is checking for Sjogren,lupus,etc.
While he is doing that should I have him check for anything you guys know about?
I have been feeling very weak and confused in my thinking. Body pain is horrible and digestive problems.
I was so much better after Lyme treatment, I suppose this is all about the damage it does after. I hope this makes sense. Atheana
Posts: 47 | From ft lauderdale florida | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Do you have a LLMD?
Does that LLMD know about this?
If this is just to check for Sjorgen's or Lupus, I would CANCEL THAT immediately. A bone biopsy is not required for those conditions.
Those conditions can also be caused by lyme and other chronic stealth infections.
Where is your LLMD in all this?
You say you " . . so much better after Lyme treatment . . ."
HOW LONG was that treatment?
Was it according to ILADS treatment guidelines or Burrascano's ?
Were other tick-borne infections assessed and treated, especially BABESIA? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see from a past post that you were "on IV for close to a year."
And you say here that you were "so much better after Lyme treatment"
Well, a year of treatment is not often long enough. Many have to treat for a couple years or longer.
I see nothing in your posts that detail a comprehensive, combination / rotation, on-going treatment until two full months past the point of remission.
I am sorry to say all this and sound an alarm but I just wonder if the doctors who want to put you through the bone biopsy are lyme literate - and experts in BABESIA, too (as that can cause all kind of problems with iron).
If not, I would not let them touch me until first discussing this with a LLMD. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
What is your blood iron level, iron saturation, iron binding capacity?
Ferritin can be elevated from inflammation, and there are many less invasive tests to confirm that...
BTW, my ferritin has been as high as over 3000, from inflammation and iron overdose (too much IV iron).
If the doctors who want to do the bone biopsy (or is it a bone marrow biopsy?) have not even done the basic iron panel (the first thing I asked in this post), then if I were you, I'd cancel that bone biopsy and find another opinion ASAP!
-------------------- -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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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
I did the Bone Biopsy after the car accident and a tremedously reduced WBC and RBC.
It was babesia causing it ( Lupus -people that took plaquinil supposedly treating lupus came out had babesia ) .
When I received Blood transfusion I went into treatment and I treated for babesia and RBC increased finally .I herxed like hell in the combo Biaxin Plaquinil and Mepron.
From wheelchair I am up now.
I could not get alive from the doctors without getting the bone marrow bipsy ( they gave me after that Blood transfusion).
I know they added potasium in the treatment as they were exstremely low but I am not sure if they included IRON .On some post here I read IRON feeds the bugs.
Wow I wish I had asked them what they gave me .I walked in Er and came out almost 1/2 dead.
Posts: 1379 | From disable | Registered: Aug 2011
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posted
Thanks to all. Had biopsy today and feeling tired. Will ;et yoou know what they were checking for tomorrow. night,night
Posts: 47 | From ft lauderdale florida | Registered: Aug 2011
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
Hope you feel better Posts: 1379 | From disable | Registered: Aug 2011
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posted
Thank you for all your wonderful replies. Keebler- I do not have a LLMD. I thought I was getting a lot better. Went to Germany and did the Bionic 880 treatment, which I feel has helped me so much. My iron total was 35 Iron binding capacity 369 %saturation 9.
Retested, all within the normal range except Ferritin 1445.
Multiply Mylenoma runs in my family, so I suppose he is checking for that and other cancers,bacteria, fungus,etc. To he honest I am so weak and my muscle pain hurts so much in my back, that I cant think properly.
I will let you know when I get results. I really find when I am on cell phone or computer I get weaker. Thanks to all.
Posts: 47 | From ft lauderdale florida | Registered: Aug 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i dont like the sounnd of any of this but dont know enough about it except to say please get to one of the top notch llmds here...really...if you are able to get to germany you should be able to get to wash dc or ny or even CA
pm me if you need names and numbers
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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