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does anyone have histoplasmosis?

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Posted 8/15/2006 3:28 AM (GMT 0)
Hi,

  I have been on the lupus forum since Feb.  I have been having joint, muscle and chest into back pain.  I developed pain at my throat over a year ago.  I had an endoscope done which showed I have some esophagitis.  But the gastro doc said it would not be causing my thorat problems.  I feel like I have a lump in my throat and neck all the time.  I do have a cyst on the right side of my throid, but was told it's not big enough to cause a problem.  I have been to an ENT he felt it was acid reflux, I have been on prevacid for many years now.  Gastro doc said it wasn't that.  I am tired all the time and feel so full after eating just half or less of what I had normally eaten.  My glands feel swollen all the time and have ear pain.  I have been to the family doc about the ear pain and he said it looks fine.  I had a hard time getting in with the ENT this year.

    I was wondering if someone has histoplasmosis? and could tell me about your experience with it.  I have a slightly positive ANA. I was low in pnuemonia caucal antigens and I also had to get a HIBB shot, was very low in those too.  I feel fluish most of the time and run a low grade fever most of the time 99.2-99.6.  When I am really feeling bad it goes up over a hundred, but doesn't always stay that high.  My voice gets so hoarse with talking too much or singing hymns at church.  I am told by the ladies on the lupus forum to not give up and try to find a doctor who will be concerened enough to work at finding what is wrong.

  So if anyone has input I would greatly appreciate it. 

Deb

  

Posted 4/5/2010 8:43 PM (GMT 0)
Deb,

I see you posted this awhile ago...so I don't know if you have gotten your answers yet about Histo.
Yes I have Histoplasmosis. I've had Histo for over a year now. It's pretty frustrating because not many doctors know very much about Histo so much...none that I have found. I was told I had pneumonia...I had all the symptoms. High fever chills, sick, hurt to breath..body aches .....But they seemed to get better and I went back to work after being off a month...two weeks back I got sick again....and again they said I had pneumonia. The third time they assumed I had pneumonia I had to go to the emergency room, I could not breath. A doctor on call there saw my x-rays and told me he thought I had something else going on. He saw that my lymph nodes were extremely swollen.
5 specialists later and 2 - 5 1/2 hour biopsy's on my lymph nodes confirmed I had Histo. When I finally got to see the Infectious disease doc he just shook his head and said..."Well I really doubt if you have active Histo any longer and if that is the case there is nothing I can do for you" I was crushed, I figured this doc was going to give me a magic pill and return me into the person I was before this disease. He sent me off for my blood test....and he was wrong....I still had active Histo. He apologized to me....which did not make me feel better, and started me on Itraconazole.....I am still taking this drug...and I am still sick. Chest pain that radiates through to my back, excessive sweating, shortness of breath, severe headaches, neck stiffness, joint pain, rashes (especially on my face), fatigue, fevers, general discomfort, muscle stiffness and pain, and excessive choking. Thre are certain positions I can not sleep in because it blocks off my breathing. I don't really feel better with this medication, which scares me....the more I read about this disease the more serious i actually find out it is. I could die from it. I have good days and I have bad days. I tried to go back to work....not the same job I had for the last 15 years because they fired me for being sick too long, but another job. I walked up a flight of stairs...I had felt fine before this, and by the time I was making my way back down...I could not breath...I felt like I was sucking air from a small straw to fill my lungs. It took me 20 minutes to actually breath normally again. By then my body was so exausted from trying to breath that I had to call it a night. So yes I have Histoplasmosis and yes I am afraid.
Posted 7/15/2010 3:54 AM (GMT 0)
Hi, I hope that you take a look at this post. I was just reading that you have been sick with histoplasmosis for 1 year. My friend who is 59 years old was in the hospital for 3 weeks before they diagnosed him at UMMC one of the leading hospitals for infectious diseases. His diagnose took a long time because it was not showing up on skin test. They finally did the lymphnode biopsy and it showed up. He almost died from not receiving the amphotericin b soon enough. He is now at hoem recovering sloooowly...very weak. I was told that you have to have intraveous treatments for this initially ( getting rid of all the histoplasmosis that is causing night sweats, fever, pain, aliver and kidney problems, etc. ) before being sent home for intraconazole treatments to further kill the fungus left over. Were you treated with amphotericin? We are located near Baltimore, Md. They have seen histoplasmosis at UMMC. I hate to hear you are still this sick.
Posted 11/12/2010 7:42 PM (GMT 0)
JuJu,

I cried when I read what you wrote...Every word described my life as of July of this year... I had pnemonia like symptoms..I went to the Dr. and a chest X-ray showed 5 golf ball size spots in my right lung...I was sent to a lung specialist ..He did a cat scan and found that there were also spots in my liver...after 3 rounds of pnemonia 5 days in the hospital and a lung biopsy...Still no answers...So 4 more lung Docs. they all took urine, blood, 3 more Cat Scans and 4 more sets of X-rays...Oh and a new Infectious Disease Doc...Still all test are negitive...By the end of Sept. I had talked a Doc into giving me Sporanox... By this time the disease had moved to my left lung and heart...The last Cat Scan shows that I am getting better...But heres the kicker...I was in the process of divorce and my Ex found out I was sick...He canceled my health insurance...lucky me the Sporanox is $30 dollars with insurance but without insurance it is $1046.00...As luck would have it my employer died in Sept....I have been to sick to find other employment and without insurance I can no longer afford to see my Doctors or afford the medicine that was saving my life...I took the Sporanox for 30 days and I just hope it was enough...As with you I am in constant pain and am so exahausted by the simplest of tasks...I have always been a very positive person but some days I just break down and cry...I felt so alone until I logged on here and saw what you had posted...Thank you for sharing your story ...I try to explain what I was feeling to my family and they just do not understand...
Posted 11/12/2010 11:58 PM (GMT 0)
((((((((((((((((((hugs)))))))))))))))))))))))
Can you get Social Security Disability?
Is there any free clinics near where you live?
It's terrible to be sick and not be able to afford to be sick.
Best of luck to both of you.
Posted 11/17/2010 7:16 PM (GMT 0)
My husband was recently diagnosed with this horrible disease. He has lost ove 35 lbs in the last year, with increasing weakness, fatigue, night sweats, fever, and abdominal pain. We both thought he was dying, without know from what. Finally after several weeks of testing the doctors went looking for cancer via CT scan. Found nodules on adrenals, biopsied and cultured and found histoplasmosis. He is fortunate as it has not settled into his lungs as far as the docs can tell. A little scarring.... we pray that's all. He started the amphotericin B. We have been told by several docs that it will knock out the histo, but will take time. We are expecting two months on the amphotericin B (a total of 10,000 ML of the stuff) and then he will be put on the sporanex (sp?) for likely months to years (per the ID doc).

Gratefully, now that  he has gone from everyday to every other day of the amphotericin treatment, he seems to be feeling a little better. The ampho seems to leave him with severe headaches after treatment, but he is starting to feel human again. He has experienced none of the severe ampho side effects we have read about, but it is still early. After reading of the tremendous suffering of the previous posters, we feel very fortunate that he was diagnosed relatively quickly, and have doctors already seemingly familiar with the treatment of this disease.

My heart goes out to you that are in this battle without health insurance, knowledgable doctors, or understanding family. My prayers are with you for strength to endure this with so little support.   God bless you through your battle.

 

Posted 9/18/2016 8:57 PM (GMT 0)
Hi my name is Glenn and have been sick for over 20 years. Unexplained. Thought it was lyme but even lyme specialist began to question his diagnoses after a year of not getting better.
My disease started with a flu like illness. Then I started noticing wheezing in my lungs. Then everything went to hell. I was admitted to the hospital where they found severe inflammation in my colon especially near the ileocecal valve. The doctor woke me up during the test and showed me all the severe contorted inflammation. He thought it was Chrohn's. He put me on iv high dose steroids which just made me 100X worse. I had lost about 20lbs now and they finally told my wife it was some rare cancer and wanted to put feeding tubes in me. I discharged myself and lay in a hospital bed at home for 3 years not getting better. A lyme specialist heard about me and I was driven to him. He gave me a drug diflucan because he noticed my tongue was all inflamed and thought it was candida. A miracle happened. After 3 pills I was able to get up our of bed and my appetite started returning. My energy level came up and I must have had this fungus in the brain because diflucan crosses the blood brain barrier. After 3 weeks on the drug I kind of reached a plateau and the lyme MD put pic lines in me with large amounts of antibiotics for months and months. I never felt better than I ever did since the diflucan. I understand that ampoteracin b and some other drugs are best for this disease and should be taken up to 18 months. I read that when its not chrohn's a likely culprit can be histoplasmosis. I still get pain in that valve and never have normal bowel movements not to mention joint pains, stiff necks, headaches and more. I am digging up my chest x-rays, old records and seeing a pulmonologist who will maybe listen to me and test for histoplasmosis. I am sick every darn day.
I am also short of breath and cannot keep up walking with my Family when visiting my son in the city. I am always a block or two behind. I hope they find some antibodies or whatever test they have for this disease because it all makes sense. I had drank highly contaminated water from a roadside well that was condemned after i complained about my illness to the town. It was 3 weeks to the day I got sick after that. I also demolished an old building upstate at the same time that had a lot of dead birds and mice in it and breathed all that crap into my lungs. I was making money at the time and was building a modular home upstate ny.
I will send another post if they find anything. I break out into sweats just about every night and have to throw my pillows away. Hope a pulmonologist is the right doctor to go to. I also have a partial collapsed lung on one side and also on abdominal ct scan have calcified granulomas which I never had previously.
Does anyone get joint pain especially mid spine with this disease or any other joint pains? Any input appreciated. Be well.
Posted 9/23/2016 8:26 PM (GMT 0)
My histo was diagnosed 38 years ago when I was 21 years old. The doctor did a lung biopsy at the time because they thought it was lung cancer. I must have contracted in as a child when we lived in Spain, I remember chickens running about where we played. When we returned to the states I lived near the Mississippi river across from St. Louis, MO. Luckily I have never been sick from it. Although now it seems I may have Fibromyalgia.
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