Tired of suffering

I have had a strange, chronic sinus infection for almost two years now. It features this thick white material, that dries everything out terribly. I have to flush this white "stuff" out with a waterpik (blunt end without the attachment). It's like plaster of paris.

I was able to walk around and function for over a year, my original ear nose throat doctor said it wasn't a big deal. Now I have been bed ridden since March 2006, with severe bone pain (face, frontal sinuses), severe pain in entire mucus membrane of all sinuses, pain in upper throat and ears, and horribly severe flu symptoms, and I still have this horrible dry white "stuff" growing in my head which I still have to flush out with the waterpik.

Every doctor I saw tried to tell me I have a nerve disorder, or that I needed mental help. The one test they could do which may have shown a bone infection, a bone scan, they refused to do for many months. After 5 months they do a bone scan, which shows something in my bones, which they now write off as something from my sinus surgery, instead of the bone infection I feel literally eating me alive. If they had just listened to me, and done the bone scan anytime before the surgery, I asked them for 3 months before sinus surgery to do a bone scan.

The pain is so bad I get horrible nausea and although its rare, sometimes it causes me to vomit. A fungal infection of the tissues can be treated with IV antifungals, but fungal infected bone has to be removed, so each day my future becomes ever more horrible. If it goes on for too long, even removing bone may not get all the infected bone which leads to brain infection and death. So time is not on my side.

I have a website up with my story, and pictures of my bone scans,
http://www.geocities.com/fungalboneinfection/

This disease is so horrible. My flu symptoms make me feel like I have full blown full. My mother takes pain medicine so I have access to pain medicine. If I could not take pain medicine at this point, I would not be able tolerate the pain and I would have just stop it all. With the pain medicine the pain ranges from a 7 to a 10 a times. Other than this infection I am in good health, no HIV, no diabtetes.

I am hoping I will be able to email to reach a specialist somewhere with a link to my webpage, and maybe someone will recognize what is going on, and help me get diagnosed so I can be treated. Thanks for reading my message :)

Jeff
http://www.geocities.com/fungalboneinfection/

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Hi Jeff...

I read your story -- sounds miserable. I'm sorry you're having to go through it.

Do you have any symptoms in the rest of your body, or all they localized in your head and neck?

Ellen

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Has your blood been tested for calcium and phosphates?

Ellen

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The rest of my body feels tired and achey like a full blown flu. Bone pain and flu symptoms, are classic signs of a bone infection. Nobody believes me when I tell them I have a fungal infection. I tell them I have this dry stuff growing in me thay dries out all the tissues horribly, and I have to flush it out with a water pik, otherwise it dries to the mucus membrane wall like plaster-of-paris, and gets thicker and thicker (no wet mucus, its perfectly dry if I don't flush it).

I have pain/infection in my entire sinus mucus membranes, upper throat and ears, and certain sinus bones, and bones in the front of my face around the sinus openings. I have to flush this garbage out every day with a waterpik. I run a waterpik (without the sharp end) from 10 to 20 minutes or longer. Imagine mold growing out of your tissues, its anchored in there real good, and its dry dry dry. My bones feel like they are trying to turn into raisins.

Back to my symptoms, the flu symptoms are like the worst flu you can imagine, not like some light cold. Its ironic, i am a registered nurse, I have a medical background. The longer I have to wait, the more bone is infected, and the less chance I have at surviving this disease.

To answer your question, I have had all the bloodwork done, including calcium and phosphate. Only a slightly elevated white count is the only thing off.

Thanks for writing !

JEff

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Hi Jeff...

I know from personal experience what it's like to have doctors tell you you're nuts or nothing's really wrong when you know there is, so I can empathize.

I was wondering if perhaps the ENTs don't know the answer because they're ENTs, and the symptoms you're having are actually a sign of something going on systemically... Perhaps a visit to a rheumatologist would help? I found in the literature that "extrapulmonary sarcoidosis" or "nasal sarcoidosis" can present symptoms similar to what you're describing... They could test for autoimmune as well, which could explain your flu-like symptoms...

Here's the link on sarcoidosis:

http://patients.uptodate.com/topic.asp?file=int_lung/2536&title=Sarcoi dosis

I also found "secondary atrophic rhinitis" which includes crusting of hard white nodules formed on the mucosa. Here's an excerpt from the article:

"In addition to the standard history and physical examination, we perform rhinoscopy with a nasal endoscope after spraying the nose with a topical anesthetic/decongestant, as mentioned previously. Although the presence of crusts and the characteristic appearance of the nasal mucosa can sometimes be appreciated with a simple nasal speculum exam, we recommend that a more complete exam be performed by a physician trained in rhinoscopy if the suspicion of this diagnosis is high.

We routinely obtain a CT scan of the sinuses (if not already performed). Finally, nasal cultures positive for coliforms are supportive of the diagnosis, although these are not routinely performed or used to guide therapy.

Evaluation for systemic secondary causes — An undetected inflammatory disorder should be considered if systemic symptoms such as weight loss or shortness of breath are present or if there is chronic epistaxis. In this setting, laboratory evidence of a systemic disorder, such as hematologic and/or renal abnormalities, or an abnormal chest radiograph, may also suggest an underlying inflammatory process."

And the link:

http://patients.uptodate.com/topic.asp?file=rhinitis/5760&title=Atroph ic+Rhinitis

Hope this helps,
Ellen

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Jeff, your situation sounds terrible and it sounds common when symptoms/disease are rare and unusual. After "dealing" with a chronic, rare disease for over 30 years, I have found that my feelings of anger, despair, frustration, etc. have lessened just a little year after year. When I finally understood that helping me (and in turn others) is my job. For whatever reason, all the talking, researching, reaching out to medical community and other people with rare disorders is what I do. I do not get paid for this job (I do receive ssdi), most people wouldn't want this job, and most people don't understand this job of mine. How could they? So, as long as I see that this process of getting help is a job I have to do in order to get answers, I treat myself with more respect. Like an investigator I have good results some days and other days nothing. I have met amazing people and like you, found out I am brave and courageous in this job. Keep up with the reaching out and please don't get "too frustrated". Little by little we find things out. Stay focused, vent feelings, write your feelings and symptoms down in a journal, and check out the health web sites online. Good luck and don't give up. Trygve

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Thanks for the comments. Going back to day one. I had something very dry, growing in the back tip top of my throat directly behind my sinuses. It dried my throat out and burned the mucus membrane. Within a few days it had traveled forward into my sinuses, burning the mucus membrane in my sinuses, and drying them out too, making my eyes appear sunken in, by sucking all the moisture out from underneath my eyes.

There is something growing in my head that is not supposed to be there. Where ever it goes or has been, it causes pain and dryness. I was able to function for over a year, while this infection had its way. Now I have severe bone pain, with severe flu symptoms, which are classic signs of bone infection.

I have gone through about 20 waterpiks during this time, which I use to flush out my sinuses. At one time I thought I would be rid of the infection if I could flush all the "dry stuff" out. When I became disabled in March, I realized it didn't matter how clean I flushed my sinuses, this infection was deep in the soft tissues and in the bone, and it wasn't a normal infection. Fungus is the only thing that "slurps up" moisture like this infection does. I take 40 to 80 fish oil capsules a day, and I am in my room with a humidifier running all day. Pain meds and super-hydration give me the only relief I get.

I won't go through it all right now, (you can see it all on my website http://www.geocities.com/fungalboneinfection ), but all the signs point to a fungus. It is so frustrating to have nobody believe me. Not only not believe me, but treat me like a crazy person or a flat out liar.

There are tests and procedures that could have been done, and my doctors didn't think my life was valuable enough to proceed with them. I have done all I could do. I had health insurance and disability insurance, but somehow, I have been bed ridden for 9 months and I am penniless, with nobody to treat me. I haven't given up hope, I am still here, still fighting.

Jeff

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Trygve - that approach (being the Project Manager of my own health) is what saved my life. After 25 years I decided I needed someone to take on the "project of me". I looked all over for "health improvement coaches" or "personal health coaches" but they don't seem to exist. So, since I do Project Management as part of my job, I decided to apply my skills towards getting an accurate diagnosis and appropriate treatment. I ordered all of my records from my doctors and poured over them, looking up lab tests and making notes of questions. Then I started using the resources on the web that doctor's use -- like MedlinePlus.com, UpToDate.com and PubMed.com. I found my diagnosis - Cushing's Disease - in a week. I pushed hard for treatment, even when the Director of the Division of Endocrinology at Shands in Gainesville insisted there was no hurry, and the psychiatrist I saw said that I was making a big deal out of nothing. As it turned out, the benign tumor in my brain was just about to get too big to operate. If we hadn't been able to shrink it or remove it quickly, it would have killed me. I had surgery on October 2, 2006 to remove the tumor, and am getting better every day.

To turn 25 years of suffering into something meaningful, and to take what I learned and help others with it, I started Caring Counterparts in October. It's a non-profit of patients helping patients with longstanding unresolved or complex health conditions through applying and teaching Project Management skills. I'm working on the website now -- www.caringcounterparts.com. We welcome volunteers from wherever they are to help like you just did. ;) It's really neat that you adopted such a similar approach!

So Jeff, you've got at least two people actively supporting you. :)

Ellen

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God bless you, thank you Ellen :)

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:)

Jeff, if you would like to send an email to me at eberry@caringcounterparts.com, I would like to send an article to you. I think it might prove useful...

Ellen

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Hi Jeff...

Have you seen an otorhinolaryngologist before? (I'm just proud of myself for spelling that right.) Apparently they specialize in treating conditions like yours, including "chronic invasive fungal sinusitis" and "secondary atrophic rhinitis" which, from reading several articles, seem like a close match to the symptoms you describe.

I found the name of two otorhinolaryngologists in Nashville here: http://www.entnet.org/ent_otolaryngologist-detail.cfm

Ezell, Roy C.
5651 Frist Blvd. Suite 309 Hermitage, TN 37076 (615) 883-2356

Ezell, Meredith
5651 Frist Blvd. Suite 309 Hermitage, TN 37076 (615) 883-2356

Also, I have sometimes found better results from going to medical schools rather than private practice. The practitioners I've seen seemed more interested in learning, open to the possibilities, and up on recent literature.

Vanderbilt University Medical School has a specialty clinic in Otolaryngology. There's a doctor there who specializes in Rhinology...

THE VANDERBILT BILL WILKERSON CENTER FOR OTOLARYNGOLOGY AND HEARING AND SPEECH SCIENCES
http://www.mc.vanderbilt.edu/root/vumc.php?site=aboutbw

Paul Thomas Russell, III, MD (615) 322-6180
Patient Care Emphasis: Rhinology & Endoscopic Sinus/Skull Base Surgery
http://referraldirectory.mc.vanderbilt.edu/directory/profile.asp?dbase =main&setsize=15&dept=THE+VANDERBILT+BILL+WILKERSON+CENTER+FOR+OTOLARY NGOLOGY+AND+HEARING+AND+SPEECH+SCIENCES%23&display_public=Y&location=6 1&pict_id=2520780

I hope this helps...

Ellen

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To answer your earlier question, yes I have seen 4 different ear nose throat doctors, and the first one "treated" me for a year, by doing nothing, telling me I had nothing to worry about. After about 15 months of infection I became bed ridden, so he was wrong. The 2nd one saw me twice and told me I had a neuropathy, (he couldn't explain my flu symptoms, green drainage, or fungal like material growing in my sinuses/throat/ears). The 3rd ENT did sinus surgery, but he wants me to get mental help, doesn't think I have anything serious, and the 4th ENT I saw, would not listen to me and said I have a nerve disorder (again ignoring 90% of my symptoms). I also have seen an infectious disease doctor as well (he thought I was crazy). I was planning on seeing a new infectious disease doctor, before I had to leave florida last month.

I have an appointment with an ENT here in Nashville later this month. It will be the first doctor I have seen since I moved to Nashville a few weeks ago.

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Aha -- silly me, didn't put together that oto-rhino-laryng-ologist is the same as ENT. Must be why they call them ENTs. I sounded like I hadn't read what you'd written -- but I have, including your website. ;)

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The major problem with this disease, is if left untreated indefinately it will kill you. If left undiagnosed/untreated for a long time, it has a high mortality rate. Fungus infected bone has to be surgically removed. For me to survive I am going to have bone taken out of my face and sinuses. If any infected bone is left around the brain, that will lead to an eventual brain infection and death.

These doctors think they are so smart, by not treating me because I am "crazy", or a "drug addict", or a "hypochondriac", but in truth they are denying me any chance of a normal future, or any future at all. Let me tell you, having the bones in your sinuses and face infected with fungus is the most painful thing you can imagine, along with all the tissues that are infected. I will keep fighting this as long as I can.

Jeff
http://www.geocities.com/fungalboneinfection/

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Hi Jeff...

Okay, I think I'm finally catching up with you here. (Sorry -- I haven't had a lot of sleep lately and am a bit slow on the uptake.)

So, you've accomplished a great deal. You know what you have, you know what it takes to treat it, and you know that it's urgent, because this disease has the potential to kill you. The problem is, you haven't been able to find a doctor who has the right combination -- someone who takes you seriously, is highly skilled, recognizes the urgency of the situation, and is committed to helping you get better. This is something that shouldn't be this difficult, right?! Your situation would be extremely frustrating for anyone, but particularly for a registered nurse who knows so much about the risks and the responsibilities of healthcare professionals.

And I hear that you feel like you're losing the battle.

Thinking aloud here, it seems that some important strategic questions would be:

-- "What steps can I take in advance of my next appointment to improve my chances of being heard, and fully optimize the opportunity an appointment presents?".

This may involve creating a one-page summary document (like you've done on your website) that drives home the importance and helps make the patient interview an efficient one, bringing a journal article that you feel represents what needs to be done, researching the doctor's specialty interests to make sure he/she is a good match, etc.

-- "Are there other ways of approaching the problem?"

For example, I found this article on an alternative treatment offered at the Ohio State University Osteomyelitis Clinic that sounds like it might have promise... https://kb.osu.edu/dspace/bitstream/1811/2542/1/V32N01_001.pdf

-- "How do I find a doctor that is a right match with what I need?"

When I was trying to get someone to believe me, I went to the Mayo Clinic in Jacksonville and the Director of the Division of Endocrinology at Shands in Gainesville, and was sorely disappointed. Although they took me more seriously than other doctors, all of their efforts were in diagnosing -- treatment to them was far less important, meaning how I felt was far less important. It wasn't until I found a surgeon who treated only people like me, and did it every day, that I got on the superhighway to health... I found him by going to an association website and looking at the authors of contributing articles to their newsletter...

Also, teaching hospitals are great resources for quality practitioners. In my experience, they tend to think more out of the box.

-- "What other resources can I assemble to support me?"

One of the strategies I took was using my psychological health benefits to "hire" a counselor to help me strategize and think clearly and objectively about things. Cognitive therapists are great for this kind of thing...

It's hard, but recruiting people to help you fight when you can't fight for yourself is important. I can tell it was difficult moving to Tennessee and being supported by your parents, but it was a really important strategic decision. You really gave yourself an advantage by being closer to people who (hopefully) can act as advocates for you, and to a new location with fresh opportunities. My sister moved here to live with me, and it was when I saw myself through her eyes that I realized just how sick I was, and because of her I had new reason to get accurately diagnosed and appropriately treated.


I'm available to help as well. If you need a fellow patient to fight for you, I'll do whatever I can. Perhaps I can help in creating the documentation for your doctor... It's my specialty. Or I could help with research to find a great doctor... I'm happy to consider whatever you think may help.

You're making progress. You're doing a great job, taking care of you.

Ellen

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hi, i am 19 years old, i have been suffering for 3 years now, from an illness which is still undiagnosed... every skill or talent i had has been in dying out, my school work is very much in jeopardy, i was aiming for doctor or lawyer, now even cleaning toilets will be difficult for me.

it started as simply feeling extra extra tired when waking up early, then it develop into pressure in the head, weakness, not being able to exercise, difficulty focusing my vision, and being spaced out. i have done a lot of tests, which all seem to be normal...could anyone help me out here? im trying to stop this illness from destroying my life. im simply looking for advice from anyone who reads this, please reply.
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Jeff,
Me too but I know I must keep going and face what's ahead of me. Suffering should bring about self eveluation and how I can better help others, that suffer. Letting them know if I can do it they can too. There are answers and sometime we that suffer must educate those that took the Job of Doctors etc.......to bring about a change. I sincerly hope cures for all of us come about in our life time and if it does not, then to know we made a difference in trying to help someone else. Stay Strong
Jannie

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Jeff,
Your email really touched me. I wanted to see how you were doing and if you had found any more answers.
Warmly,
Lynn

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