Discussions By Condition: Medical Stories

Histoplasmosis,scopulariopsis,congenital lymphocytopenia

Posted In: Medical Stories 5 Replies
  • Posted By: dougsgirl63
  • August 15, 2007
  • 09:22 PM

I will try to make my long complicated story short as possible.

It all began three yrs ago when i got an Ecoli Bacterial Infection in my left kidney. I was hospitalized for that till it was clear. The following year, which was a year ago in April, I got another Ecoli puss pocket in my left ovary. It ruptured and nearly killed me, as it shot poison all through my internal organs. They never figured out why or how it could have gotten there.

Eight months ago I began to get lesions on my skin, many lesions. Through 3 biopsies, and a bunch of doctors from Harvard looking at them, and from the cultures and the stains they said it was histoplamosis that I now have. I have been on sporanox now for 8 months. Now I am developing calcification of my Thymus and it is sitting close to my heart.

My Iinfectious Disease doctor thought i had HIV but after doing several, and I mean several test, we learned that I do not in fact have HIV but Congenital Lymphocytopenia. It was an absolute lymphocytes on my results. I am being tested every two weeks, for the past 6 -7 months, for this and to test my liver because of the Sporanox I am taking.

Can you help me? My doctors here in Illinois are clueless as to how to help me. My internal meds doctor is now saying that the doctors at Harvard are wrong and he has personally diagnosed me with Scopulariopsis, since I also have the skin lesions. With my calcifying of the lymph nodes another doctor has told me it is disseminated Histoplasmosis. I am so confused but they are all telling me it is brought on my the congenital lymphocytopenia.

Is there any help for me? I am now beginning to suffer neurological problems. Last Saturday new things began to happen. My pupils are now like pin points, I am severely dizzy and have been throwing up. I describe it like being on a merry go round trying to pick something up with it going round and round and round.

Please can you help me, as all this is suppose to be brought on by the congenital lymphocytopenia. The Histoplasmosis,all of it plus i also have cancer of the vulva. They called it a year or more ago but do not know how far that has gone do to all this other i am dealing with i have not had it checked. They say i am catching ALL of this do to my defective immune system. Is there any hope?

Please write back to me,


Thank you for listening,
Elizabeth Winstead
in Illinois

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5 Replies:

  • Dear Elizabeth there is hope!. My doctors were at a loss too, when they realized they had wrongly diagnosed me with carcinoid cancer. They told me I was a "medical mystery". It wasn't true. I found a doctor who knew about chronic fatigue syndrome and I was correctly diagnosed.My doctor wrote me 2 prescriptions and wrote a diagnosis of CFS on paper. The end. I payed 120.00 for the visit. I did not get any better.The way I got better was by finding this forumSomeone recommended NAET/Bioset therapy and I took the advice. I was sick and desperate. The docs were at a loss.I have attended 6 Bioset sessions and my symptoms are 90% gone!!Even my fiancee is impressed with the results. I'm a nurse so I was very skeptical....I now spend my free time here, trying to help other people take back their lives.More people here are taking the advice so stick around....I am not the only testimonial here!! Good luck....If you let me know where you live, I will try to help you find someone near you. These practicioners are global!! Regards,mommy cat:)
    mommy cat 1654 Replies
    • August 16, 2007
    • 09:31 PM
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  • Hi it's nice to meet you!I live in Northern Illinois but do not want to say where on this forum.If i had your addy i would discuss more about the area in which i live. It has been about 6 days now and my pupils are still tiny and i am very disoriented and extremely dizzy now.To look down at the key board and look up to see what i wrote is making me nausiated.I watched the show on discovery health again about the man with rocks in his chest who has the same disease that i have Histoplasmosis who also had lymph nodes calcifying in his chest..He also suffered these nuerological problems and i am wondering if this is whats wrong. The hospital when i went last Saturday told me to see my doctor in 2 days and i am unable to get into see him till Monday.I am very concerened as it is the 6th day now and still dizzy and tiny eye pupils.My husband says that when i talk to him my eyes move from side to side like i can not focus or something. Can you find a Doctor who specializes in Histoplasmosis in my area?My Infectious Disease Doctor i no longer trust since he lied to me and i am now just seing a general practioner at the free clinic who was once an internal meds doctor.I am just scared and confused with all my health issues i have going i know this symptom can not be good and i feel as if i am dieing a little more each day.Thanks you so much for reaching out to me i am in need of help and soon.Thanks Beth in Illinois:(
    dougsgirl63 6 Replies
    • August 17, 2007
    • 03:03 AM
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  • Dear Beth www.naet.com click on "Find a practicioner in your area"...when the map comes up, click on IL....it will take you to pages with NAET practicioners in your area... Find one and go....come back and let us know how much better you feel after the first 3 treatments, no kidding!! My symptoms are 90% resolved....This works...just found the info for a guy in IL...he's having similar issues. Best regards,mommy cat
    mommy cat 1654 Replies
    • August 18, 2007
    • 00:33 PM
    • 0
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  • Hi Elizabeth,I just happened to read your medical history on-line. I am an immunologist. I just want to let you know that if you have idiopathic CD4 lymphopenia (ICDL), you may want to go to the NIH website and look up the "ICYCLE" trial. This is an experimental treatment protocol for ICDL using IL-7. Best wishes,Daniel
    Anonymous 42789 Replies
    • December 12, 2009
    • 09:38 PM
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  • Well it's a few years later and I'm back!Since I last posted I have had three cancer surgeries to remove what they could of the cancer as well as removal of some lymph nodes.I have Vulvar cancer.I went through 9 weeks of pretty intense chemo/radiation at the same time mind you and just when I thought things were going to some how be getting better, I have the skin lesions again.They took two biopsies one was back in two weeks and it said histoplasmosis but my infectious disease doctor says he thinks it's scopulariopsis but we are waiting on the last culture to come back to see what that shows now.I am also over run by a virus as well as the fungal.Since the chemo and radiation My rectum has been over taken by tag warts.There must be 20 or more all just in and around the rectum.My feet are covered in seed warts spreading upwards to my leg.I just dont know what to do any more I'm about to give up.I constantly feel as if I have the flu.my bones ache and I just always feel sick anymore.I do how ever have an appointment on the 28th in Peoria for the first time ever to see an immunolagist and I am praying that maybe just maybe there may be some hope for me?Hi Elizabeth,I just happened to read your medical history on-line. I am an immunologist. I just want to let you know that if you have idiopathic CD4 lymphopenia (ICDL), you may want to go to the NIH website and look up the "ICYCLE" trial. This is an experimental treatment protocol for ICDL using IL-7. Best wishes,Daniel
    dougsgirl63 6 Replies
    • October 19, 2011
    • 03:08 PM
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