posted
and RBC Folate 1470 with no supplementation and a rotten diet.
Would anyone know what could cause this and what effects it would have on the body
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
maps, from what I am reading, a B12 level should not be over 600.
I have researched "vitamin B12 overload" and come up with this site which speculates what could cause this:
posted
up - Have looked all through internet and searched here but can't find anything to explain this so any input woould really be appreciated.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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posted
Sorry missed your post - wow what a find have bookmarked the link as i have been to so many sites that new nothing.
I am so gratful the doctors have told me that I must be supplementing, which I knew I was not and this maybe this could be the answer to the spasms I get and the pelvic pain. Have printed the article for the doctor but will read it again later.
It also, gratefully, looks like I might be able to get it treated fairly easily.
Thank you, thank you for taking the time help.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi maps...
I found these online> They all have something different to say.
posted
mmm, number two is a little scarey as I already have monoclonal gammopathy.
One doctor has seen the results and made no comment but the doctor that did the tests has called me back and I have an appointment on Tuesday.
It will be really nice to go armed with the information that you guys have just shared with me.
Plus, have sent the results to llmd in Washington as they actually requested all this testing they had also requested supplementation with b12 shots and 4 folate tablets a day. After getting this information not going to take either.
Really appreciate any time spent on finding this, don't know how you did it though as I searched on many different combinations of the question.
Very smart people you are
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hey maps, I see you have monoclonal gammopathy.
Since you didn't say you had this in your first note, you may not be aware of this>
Monoclonal Gammopathies of Uncertain Origin: Treatment & Medication: Treatment Medical Care �If a patient has no other features of a plasma cell dyscrasia and if a serum M-spike is detected, complete assessment of the patient's general medical status is needed. ◦Include baseline measurements of serum vitamin B12 and RBC folate levels and a hypercoagulation profile. ◦In addition, specific workup relative to the gammopathy should include a bone marrow examination, skeletal radiography (including single views of the humeri and femurs and complete spinal with optional lateral views), and a 24-hour urine collection for protein quantitation. ◦Serum protein electrophoresis should be repeated in 3 months after diagnosis. If the results are stable, medical assessment should be performed every 6-12 months. �If a patient has an IgM M-protein, aspiration and biopsy of the bone marrow and CT scanning of the abdomen may be useful in detecting WM or other lymphoproliferative disorders. If all these results are satisfactory, serum electrophoresis should be repeated in 2-3 months at the earliest, and, if the finding is stable, the test should be repeated at 6- to 12-month intervals. �Serum and urine electrophoresis with immunofixation should be performed if the serum M-protein value increases or if other evidence of evolving MM or WM is observed. �No treatment is recommended for patients with MGUS. However, if preventive clinical trials are available, patients should be encouraged to participate.
posted
No, I was not aware of this at all, I was diagnosed a year and half ago by my ID doctor.
I have had spine mri showing lots of bad stuff plus the white matter lesion. Had full body bone scan nothing, but am positive for ebv and the site you sent me mentions that as a potential cause. But have not had any of the tests mentioned in the above. Guess I am going to overwhelm my doctor at my appointment.
I went to the site and joined, lot of good information but sometimes to technical for me to understand what they mean
I wonder if this had anything to do with all the little bumps just under the skin in my abdomen, my naturapathic doc said it was normal but last month I went to the LLMD clinic in washington and they said it was not normal but I was so exhausted that I did not ask what it was.
It seems to be spreading and in the back of my mind it has been niggling at me that maybe it is the lymp system, so guess I will also get that checked out.
I can't tell you how much this has helped me right now I am taking a break from antibiotics and feeling a little better for it but also taking a large dose of gabapentin for the pain. Maybe I am clear of the lyme and now something else is going on.
Lot's to think about and check into, thanks.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
see if this relates to your Bumps and Lumps Below the Skin.
posted
No these are much deeper so I googled your two suggestions and found this link (your mind must be a lot clearer than mine as I never searched on fat deposits ) which describes them almost exactly but I am not overweight in fact probably underweight.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
Are you eating a lot of "fortified" foods, like boxed breakfast cereal, certain breads, pastas, etc? Check your labels. They add folate/folic acid to those foods. So not sure if that would explain it. When you are eating those foods, you are essentially taking a supplement.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
My B12 is 1476 and folate is 1470 I just assumed that B12 and folate were different things do you mean they are the same.
I do eat 2/4 slices brown multi grain bread I will check the label on that. Interesting link, thanks
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Oh, sorry. I didn't notice those were two different numbers, so I thought you were thinking "RBC Folate" was Vit B12. They are two different things, yes.
Well, the folate could be high because of what you are eating (could be....not saying definite), but to my knowledge, they don't add B12 to prepackaged foods, so unless you are eating a lot of shellfish, the high B12 is likely not from foods (B12 is not added to shellfish, it's just in high concentrations naturally in things like oysters, clams).
But the folate is an added supplement in some foods people eat, to prevent birth defects, since people don't eat enough leafy greens, etc.
Posts: 4590 | From Midwest | Registered: Jun 2008
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