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  #1  
Old Thu Feb 4, 2016, 07:45 PM
Barbara Anne Heinen Barbara Anne Heinen is offline
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Location: Clarion, PA
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NOBODY with Bone Marrow Failure is that hurt.

My White Blood Cell Count is 3.4 My Absolute Neutrophil Count is 160. Every Professional Medical Reference I read says that Absolute Neutrophil Count of 160 puts me at Life Threatening Risk Of Infection. Other Professional Medical References say that Absolute Neutrophil Count requires them putting me in the hospital. My teeth are falling out of my mouth when I eat with my Undiagnosed Untreated Immunosuppression. The people that don't want me to get paid tell me I'm not that hurt. A Physician tells me those Blood Cell Counts are "not that low" and wouldn't order medical treatment. I did not inherit my Bone Marrow Failure as I'm adopted. However my father was able to walk out of his bedroom and get in vehicles a week before he died of BONE MARROW FAILURE and he had no outward signs of injury.
I guess he WAS THAT HURT.
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  #2  
Old Thu Feb 4, 2016, 11:47 PM
Cheryl C Cheryl C is offline
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Hi Barbara - I understand your fear, considering what happened to your adoptive father. However you can do a lot by implementing simple hygiene measures such as handwashing, minimal close contact (eg hugging, kissing) with non-family members, washing fruits and vegies thoroughly, a vegetarian diet and lots of water to drink, to counter the risk of infection.

I've lived for many years with average neuts 0.8. lymphs 0.5 and WCC around 1.6-1.8 and am seldom ill. When I do get an infection I don't take longer than anyone else to come through it. One day that might change, but in the mean time I minimise consumption of foods containing sugar (except for honey, stevia or xylitol). If I know i'm getting an infection, I treat it quickly.

Have you been diagnosed with a specific bone marrow failure disease? How are your globulin levels? People on this forum will be able to encourage you and inform you more I'm sure.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #3  
Old Fri Feb 5, 2016, 11:03 AM
Marlene Marlene is offline
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Hi Barbara,

Can you clarify your Absolute Neutrophil count? Is it 1.60 or is .160? I've never seen it expressed as 160.

If it's 1.6, then your body can fight off infections. My husband, like Cheryl, did fine with very low neutrophil count for quite a long time. Are you dealing with gum disease? Is that why your teeth are falling out? It is possible to have more a second medical condition not directly tied to a low WBC.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #4  
Old Mon Feb 8, 2016, 11:44 PM
Barbara Anne Heinen Barbara Anne Heinen is offline
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US National Library of Medicine
National Institutes of Health
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070837/

Severe neutropenia
a diagnostic approach
Patients with a neutrophil count of less than 0.5 × 109/L (500 cells/μL) and signs or symptoms of infection require immediate hospitalization and prophylactic antibiotic therapy
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  #5  
Old Tue Feb 9, 2016, 02:28 PM
Barbara Anne Heinen Barbara Anne Heinen is offline
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Neutropenia - Medscape Reference
emedicine.medscape.com/article/204821-overview
Medscape
Jan 9, 2015 - The risk of serious infection increases as the absolute neutrophil count (ANC) falls to the severely neutropenic range (< 500/µL). ... with the total incidence of all infections and of those infections that are life threatening.

What is neutropenia? What causes neutropenia? -
www.medicalnewstoday.com/articles/265373.php
Medical News Today
Rating: 3.6 - ‎42 votes
Sep 9, 2014 - Severe neutropenia - there is a serious risk of life-threatening infection because the patient lacks the means to fight off invading germs.

[PDF]Understanding Severe Chronic Neutropenia: A Handbook For
http://www.severe-chronic-neutropeni...andbook_en.pdf
neutropenia. The lower the neutrophil count, the greater the risk of infection. This risk increases if ... can be life threatening when the patient is persistently severe.

Neutropenia - Wikipedia, the free encyclopedia
https://en.wikipedia.org/wiki/Neutropenia
Wikipedia
Patients with neutropenia are more susceptible to bacterial infections and, without ...attention, the condition may become life-threatening (neutropenic sepsis). .... risk of infection;
Severe neutropenia (ANC < 500): severe risk of infection.

Neutropenia - The Merck Manuals
www.merckmanuals.com › ... › White Blood Cell Disorders
Neutropenia, if severe, significantly increases the risk of life-threatening infection. ...falls below 1,000 cells per microliter of blood, the risk of infection increases.

Neutropenia and risk of infection | Lymphoma Association
www.lymphomas.org.uk › Catalog › Information
Why are people with lymphoma more at risk of infection? .... infection. Neutropenicsepsis is a serious condition, which can be life-threatening so it must be treated urgently. ... Infection can be severe and take hold quickly if you are neutropenic.

Risk Associated With Severe Neutropenia - Neulasta
http://www.neulastahcp.com/risk/dura...re-neutropenia
The risk of infection approached 100% as the duration of severe neutropenia ...Episodes vary in frequency, severity, and may be life-threatening

Last edited by Barbara Anne Heinen : Tue Feb 9, 2016 at 03:11 PM.
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  #6  
Old Tue Feb 9, 2016, 03:09 PM
Barbara Anne Heinen Barbara Anne Heinen is offline
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Why My Teeth Are Falling Out When They Never Used Too

LEUKOPENIA DISEASE
http://leukopeniadisease.com/leukopenia-symptoms/
The mild Leukopenia is not a matter of great worry but the severe one can allow great infections to attack a patient’s body. Regular or unusual infections, particularly constant GINGIVITIS or periodontitis, might be there as Leukopenia symptoms.

MEDSCAPE
Neutropenia
Author: Christopher D Braden, DO; Chief Editor: Emmanuel C Besa, MD
Common presenting symptoms of Neutropenia include the following:
Low-grade fever
Sore mouth
Odynophagia
Gingival pain and swelling

Patients with agranulocytosis usually present with the following:
Sudden onset of malaise
Sudden onset of fever, possibly with chills and prostration
Stomatitis and periodontitis accompanied by pain

Physical findings on examination of a patient with neutropenia may include the following:
Periodontal infection
Swollen and tender gums

SEVERE CHRONIC NEUTROPENIA
http://www.neutropenia.ca/about/...n...ic-neutropenia
Gingivitis, periodontal disease and the loss of permanent teeth is a common ... Many cases of severe chronic neutropenia are diagnosed because of dental ...

MERCK MANUAL
http://www.merckmanuals.com/home/mou...sPeriodontitis may cause bursts of destructive activity that lasts for months followed by periods when the disease apparently causes no further damage.
Many diseases and disorders, including diabetes (especially type 1), Down syndrome, Crohn’s disease, leukopenia, and AIDS, can predispose a person to periodontitis.
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  #7  
Old Tue Feb 9, 2016, 07:33 PM
Marlene Marlene is offline
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It's very important to keep up your oral health. You may need to see your dentist every 3 months. Also, gum disease can be related to the H.pylori infection which coincidently, can mimic MDS symptoms. Your GP can test you for H.pylori. I think the first time they would do a blood draw to check.

And if they haven't yet, get your vitamin D, B12, Folate, zinc and copper checked. You should not take any supplements 4 or 5 days before testing.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.

Last edited by Marlene : Wed Feb 10, 2016 at 09:04 AM.
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  #8  
Old Thu Feb 11, 2016, 02:01 PM
Barbara Anne Heinen Barbara Anne Heinen is offline
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It's not H.Pylori

I am not able to understand why you reply to my posts with your resistance of acknowledging that Leukopenia and Neutropenia causes Peridontitis when there are a myriad of Professional Medical References that confirm that.
I have no history of gum disease or Peridontitis prior to the precise time that my Bone Marrow quit working when I was ingesting well water that after when I was no longer ingesting that well water my White Blood Cell Counts and Neutrophil Counts improved and then when I was ingesting that well water again my White Blood Cell and Neutrophil Counts went low again, even lower than they were. THAT'S what is not coincidence.
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  #9  
Old Thu Feb 11, 2016, 03:46 PM
Marlene Marlene is offline
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Barbara, I am not saying you don’t have neutropenia, just suggesting some things to explore that may be helpful overall. I certainly did not intend to offend you. We are no strangers to neutropenia. The reason I suggested getting checked for H.Pylori is because you can have the bacteria and not be symptomatic. But once your immune system is compromised, infections can take hold and it can affect your gums. Many infections, occurring while neutropenic, are from latent viruses, fungus or low-grade bacterial infections already within a person. The infection needs to be treated. Medical references cannot confirm anything. An accurate diagnosis is needed. If you are not satisfied with your doctor, you may have to find another. Second and third opinions would be warranted as well as checking your water from contaminates.

I apparently misunderstood why you are posting and what you expect to get from this forum, but know that everyone here just wants to help.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #10  
Old Fri Feb 12, 2016, 03:24 PM
Barbara Anne Heinen Barbara Anne Heinen is offline
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It's not latent viruses, fungus or low-grade bacterial

Medical References can not confirm anything? What?
What do you think the Physicians go on to make their diagnoses? They have to use the Medically Accepted and Defined Definition of EVERYTHING to make a diagnoses. Who do you think writes the Medical Reference Papers?

In other words, when every Medical Reference defines Severe Neutropenia as an Absolute Neutrophil Count < 500/µL and your Absolute Neutrophil Count is 160/µL with an L for LOW next to it, confirming it's not within the normal range, that would confirm that you have Severe Neutropenia.
What's it matter if it's 1.6 Low or .160 Low or 160 Low if it's LOW and under 500/µL that means you have Severe Neutropenia.

When the Physicians write on their Professional Medical Reference papers
"Patients with a neutrophil count of less than 0.5 × 109/L ((500 cells/μL) and signs or symptoms of infection require immediate hospitalization" and when they put an Absolute Neutrophil Count any lower than 500 cells/μL puts the "patient at serious risk of life-threatening infection because the patient lacks the means to fight off invading germs," that's what it means not everything else in the universe.
It certainly does NOT mean as you put it "If it's 1.6, then your body can fight off infections." 1.6 what?

My teeth falling out of my mouth would probably be "symptomatic" of the Peridontitis that occurs with Leukopenia that occurs with Immunosuppression that occurs with ingesting of Well Water that has Arsenic in it that just so not coincidentally is the precise time my Bone Marrow quit working with no history prior. And then when I was no longer ingesting that well water my White Blood Cell Count and Neutrophil Count started improving and then when I was ingesting that well water again my White Blood Cell Count and Neutrophil Count went low again, even lower than before.
Or you could just keep trying to attribute that to everything else when it's more than obvious it wasn't caused by anything else other than ingestion of that well water.
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  #11  
Old Sun Feb 14, 2016, 11:26 PM
Cheryl C Cheryl C is offline
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Hi Barbara - You sound really angry and frustrated and I'm sorry we can't be more helpful. I'm having difficulty working out what you are expecting from the forum.

On this forum we are all patients or carers for patients who have been diagnosed with bone marrow diseases, so even though you've given us the information you have, we're not qualified to judge whether your problem has been caused by contaminated well water or whether you should urgently be admitted to hospital. Many of us have no definite idea how we contracted bone marrow failure. There are very few known causes which have been officially identified (see http://www.webmd.com/cancer/lymphoma...toms-treatment).

Like Marlene, I would suggest that you get a second opinion from a haematologist and also from a periodontist.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #12  
Old Wed Feb 24, 2016, 12:17 PM
GoodDay5150 GoodDay5150 is offline
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Ok, I have been getting CBC tests on a regular basis for almost 5 yrs. I have a copy of my results from last April w/ the reference range. In my opinion, your WBC and neutrophil counts are low enough that you should prob seek medical advice from another hematologist. I would not diagnose myself, and while the internet has many great resources, it does not take the place of a medical doctor who will not only review your CBC and other blood tests, they can also examine you. Good luck in your treatment

Mario
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