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Avatar universal

Doctor for systemic fungal infection?

How does one get to the RIGHT doctor for an undiagnosed systemic fungal infection? I have a working Immune System and no other illness and I believe I have been misdiagnosed for 26 years with seasonal allergies and sinus infections. I can't even get a doctor to give me a scan because all of my tests appear so healthy. I feel very seriously ill and I am basically bedridden for the past 10 years. For 9 months now I have been trying to get help with this- but my Blood Fungal Test came up negative. I have already tried 6 months of strict diet and 2 months probiotics and all I have managed to do is shrink it, it isn't gone. I have used Baking Soda for 6 months  (with huge success) but do not feel comfortable continuing due to the risks.  Is there really no way to get help with this quickly? I read online that in HEALTHY people that have this there is only a 13% survival rate if you host it over decades- I am living the why behind that right now with the medical world. I can find no information supporting that I can rid myself of this with diet alone due to the fact that I have had it for decades. I can also find no information on possible damage left behind by something like this when you have hosted it for so long. Any information would be much appreciated!
26 Responses
1415174 tn?1453243103
COMMUNITY LEADER
What type of systemic fungus do you think you have? What are your symptoms? Did you travel? Do you have  a chronic cough/fever etc?  Or is it skin infection. I need more detailed information. Have you been to an infectious disease doctor yet?
thanks,
Avatar universal
I believe I have Candida- I have about 100 symptoms- that the medical world has told me were seasonal allergies and nothing more for the past 26 years. Problem is all of these symptoms have become more severe and happen non stop now and they become more severe very slowly. A systemic infection is inside your body so no- I do not have a skin infection. I had a low grade fever for 15 years. I would be the rare case of a working immune system so NONE of the symptoms show as they do normally- In our area no Infectious Disease Doctor will not see you without documentation first of what you have. Evidence I currently have is thrush that has been in my mouth for 3 years and toe nail fungus since 1998. Main symptoms present like many other things... severe fatigue, brain fog, severe inflammation, headache, dizziness.. all made worse by consuming sugar or carbs.
4 Comments
Have you actually tested your tongue for yeast or does it just look white? Bacteria can look white too. You can use a tongue scraper to see if it bleeds with gentle scraping if so then it is more likely yeast if not then it may be bacteria. A dentist can look at it and tell what it is. Many people have toe nail fungus it is "common mans' disease. But  I wonder if you don't have something else instead like lyme disease? Have you checked for that?
Also, check for diabetes? Do a fasting hemoglobin A1C? I would like to try to help so try not to be angry with me. I know the medical system can throw people under the bus. I am not a doctor though but I am a microbiologist So I have a different point of view. It also took 8 years for me to be diagnosed with migraines. They put me through hell to figure it out.  So I understand your feelings.
mkh9
Hi meh9.  I believe my husband (64 y.o.) has at least a skin fungal infection (maybe malassezia) and likely a systemic infection at this point.  DO I ask his dermatologist to test his skin or his primary care doc to test his blood?
Hi Olefokes, Malassezia, does your husband have dandruff or Seborrheic dermatitis? For example, he would have skin lesions, large plaques, or greasy, oily skin, dandruff, itching, redness, and hair-loss? You can have the dermatologist take a look at his skin problem. They may or may not need to do a culture if they can tell by looking at the problem. Does he have a very high temperature or fever? If not it is not likely to be systemic. Malassezia doesn't usually get systemic.
mkh9
p.s. yes if you think he has a systemic infection and has a fever get his blood tested. They can test for various kinds of systemic molds and yeast in the blood culture.
mkh9
1415174 tn?1453243103
COMMUNITY LEADER
I am a microbiologist so I get that you have a chronic infection but if it isn't in your blood or spinal fluid it isn't systemic. It is a chronic infection which is different. I am just trying to get to the root of your problem. Is it just in your mouth? Toe nail fungus is everywhere and almost everyone has it. Oral thrush is not normal. So, have you been treated for the oral thrush? Have you ever been tested for what species you have? Are you sure it is thrush. It is solid white that bleeds when you scrape it off. I thought I had thrush and it was just a staph (which is also white). There are some strains that are very resistant to anti-fungal medication. Have been tested for HIV? Are you on any immunosuppressant drugs? Have you had your immunoglublulin level, CD4 or CD8 level done? Complete blood count done? I am just trying to get to the root of the problem and help. Yes your symptoms are non specific. Is your blood sugar normal? You could get tested for Hemoglobin A1C to see if you are diabetic or hypoglycemic. It may explain the dizziness with sugar. So you should see a family doctor or dentist and see if they can get the yeast identified. They should do a culture or at least a wet prep or smear to see for sure it is yeast. If it is they should speciate it then you could be treated properly for it. If it is a resistant strain that may explain why it hasn't gone away. But why you got it in the first place may be harder to figure out.
mkh9
1 Comments
Actually, the blood tests that are standard for testing systemic fungal infection are insufficient, especially if you're already doing something to kill off the fungi. You would have to have it really spread throughout your body to the point of almost death for it to show up on a regular blood test. You need Live Cell Dark Field Microscopy to detect a systemic fungal infection in the blood, but make sure you have a good technician who can recognize the fungal forms in it.
Avatar universal
I  have had a yeast infection for over two years (vaginal) I have seen GP, OBGYN, & an Infectious Dr. All say blood work is fine. they all give me rounds for Diflucan and Creams. I am on a very Strict diet NOTHING is working. I feel bad all the time. My marriage is also stressful due to lack of sexual relations. I am at the end of my rope. I feel something is seriously wrong. The only other health issues i have are Thyroid (removed) I take B12 Injections Potassium Vit D and Synthroid. Who can I see that specializes in Fungal Infections? I dont care how far I have to travel or the cost, I want to get better!!! What test should I request ??
1 Comments
wow im so sorry to hear this, i too have been tested for eveything and had serious somach issues, no stds and no signs of why i always get severes stomach pains, i have had a penile yeast infection for over a year and diflucan doesnt work for me neither do the creams, MK9 is great hes great to talk to and he gives knowable advice. IM here for you if you nee someone to tlak and listen as i believe im ina  similar boat. THIS ***** and no one believes is
1415174 tn?1453243103
COMMUNITY LEADER
Do you know if anyone has actually identified the species of Candida that you have? Some species are very resistant? If you still have the same species of yeast after taking  the meds then it may be a strain that is resistant to that treatment. I do know a great infectious disease doctor in California (near Santa Monica). But I would have to check on where the office is now. But you should be able to have them test for it there in your area. There is no reason that if you have this yeast for so long and the treatment isnt' working that they should let you request that you get tested to speciate the yeast. Not all yeast are sensitive to the treatment. You could have one these types. Infectious disease doctors should be the ones that would take care of fungal infections. Maybe you don't have a good one and should see another one there first?  I understand about the problem you are having with your marriage due to lack of sexual relations as that happened to me after a back injury. I felt so bad about it. We're finally after several years getting somewhat back to normal. I am also taking a high dose of vitamin D and synthroid. What do you think?
mkh9
2 Comments
Please, please help me. I have been positively identified as having C. Glabrata in urine and vagina. I have had 7 infusions of Caspofugin which has not worked. I am  completely bedridden and in horrific  pain. I live in Los Angeles so any doctor in Santa Monica would be perfect. If you can find that person's phone number please will you supply it to me. Thank you. I am desperate.
Hi, and sorry you have this problem. We can't give referrals on this site. But you can ask any infectious disease or other doctor like a OB/GYN or family practice doctor to try something like Amphotericin B cream or another appropriate drug. I don't know which is the best.
mkh9
1415174 tn?1453243103
COMMUNITY LEADER
Betho8477, did they test you for diabetes? I assume so since you said your blood work is normal? Having a yeast infection for so long can be a sign of diabetes. FYI the strains that are resistant to the usual antibiotics for yeast are Candida glabrata, Candida prapsilosis, Candida tropicalis, and Candida krusei. Sometimes these can be resistant to the stronger anti-fungals as well. So are you bedridden for so long due to chronic fatigue or pain or both. What is going on there?
mkh9
Avatar universal
I have been tested for everything. I am in the funeral business so I get a regular blood work once a year. I was on  antibiotic therapy about 5 yrs ago for post strep syndrome but the yeast started years later I have had the yeast two years and four months. I havent asked for them to test the strain of yeast. I am not bedridden yet, I am still working my insane work sched. I called my obgyn yesterday and they called in the same cream 7 day treatment and wellbutrin to ease any stress. I am considering going to Mayo clinic to get another opinion. I guess my main concern is that there isnt an under lying issue bigger than the yeast. I will def mention the yeast be teasted next week for the specific type of strain.
2 Comments
Yes You need to have it tested because some species of yeast are resistant and then you will know that the anti-fungal cream isn't working for that yeast. They can use Amphotericin B cream if it is resistant and also I would see if they have a vaginal terbinafine cream (not sure if they have one). But they do have terbinafine pills. Terbinafine works on yeast and dermatophyte fungi (like athletes foot fungus) that are resistant to the types of anti-fungals that end in azole.  Hope this helps.
mkh9
Yes You need to have it tested because some species of yeast are resistant and then you will know that the anti-fungal cream isn't working for that yeast. They can use Amphotericin B cream if it is resistant and also I would see if they have a vaginal terbinafine cream (not sure if they have one). But they do have terbinafine pills. Terbinafine works on yeast and dermatophyte fungi (like athletes foot fungus) that are resistant to the types of anti-fungals that end in azole.  Hope this helps.
mkh9
1415174 tn?1453243103
COMMUNITY LEADER
Hi betho8477,
I looked at your original message and you shouldn't use baking soda to try to get rid of the yeast or really any douche. The baking soda causes the wrong pH and can actually make things worse. The vagina is really self cleansing. You don't want to make it worse. I know you have yeast infection but still I would stick to anti-yeast (fungal) medication. But, yes I would try to insist that they identify this yeast to the species level. Since you have had it so long there could some underlying problem we are missing. But, they all try to treat for Candida albicans that is generally not resistant. Most infections are C. albicans. But, C. glabrata is fairly resistant. But you could have gotten one of the very resistant strains. If they don't want to pursue it I would try Mayo clinic if you can. I has been far too long for you to suffer. Please let me know how your appointments go.
mkh9
Avatar universal
I hope you can possibly help me. I contracted a parasite or fungus 6 and 1/2 years ago. I think I was bitten by a spider or bird mite (I used to feed the birds on my patio.)  Soon after being bitten, I noticed what I thought were numerous "balls of white lint" in my long, beautiful, baby fine hair. I didn't pay much attention at first but soon my hair turned very, HARD, WIRY, VERY THICK (looks like barbed-wire under magnifying glass). Soon I started experiencing numbness on my right side of body. (The bite was on the LEFT SIDE of my SCALP.) One time it was so bad I was admitted to the hospital for a week because the doctor thought I had had a STROKE.  I had not had a stroke, but the problems persisted. I started going to dermatologist and infectious disease doctors. Some believed me, most didn't at first, but now they can see with their own eyes I've lost most of my hair and what I have left is a kinky, hard wiry mess even the hairdresser can't do anything with.  The WORST PART is I'm starting to have DIFFICULTY WALKING due to the EXTREME WEAKNESS AND NUMBNESS of my RIGHT LEG!!!  Still the doctors won't take my suggestion that all my problems started after the initial insect bite!!!  I've been given countless CAT SCANS, MRIs, Ultrasounds, blood tests, fecal stool tests, etc.  A couple of dermatologist said they also thought it looked like a fungus or parasite, but when the Medical Technician couldn't identify it and it didn't grow in a "fungus dish", they gave up and said they must have been mistaken. (I also find these "white lint-like balls of lint-like matter on the outside of my rectum.) On examination under a magnifying glass, there are a "long red hairs and occasionally a few black" in the middle of these "white lint-like balls". On closer examination, these white "hairs" actually have a "BARB' on one end and are "TAPERED" on the other.  I don't know what to do as I'm getting physically weaker by the day. I experience terrible SHOOTING PAINS in my RIGHT FOOT and LEG.  The pain was SO BAD this morning that it woke me up!!!  I'm PARTICULARLY CONCERNED, because I have to take care of my ELDERLY 88 YEAR OLD MOTHER and now I'm getting TOO WEAK AND SICK TO DO THAT!!!  If you have any suggestions and/or can refer me to a doctor who can help me in the Los Angeles area, my Mom and I would REALLY APPRECIATE  any and all assistance you could give.  Thank you very much.  Sincerely, ds10
1415174 tn?1453243103
COMMUNITY LEADER
Hi ds,
since this is someone else's post can you message me? I am not sure I can help but I'll try. Have you seen a neurologist?
mkh9
Avatar universal
hello mkh9 my question is how do i find doc who is a micribiologist like urself i have a fungal infection i've caught on my foot in a fitting room & my foot burned and peeled & itched and it spread between my toes & my crotch & into my kidneys i have burning itching & some spotting from my vagina & it read & undomfartable for some months now. i am a healthy person otherwise & use same soap as before. i need a doc who can do a fungal culture test on my skin of the foot where this originated. i have tryed topical cream like clotrimazole ketaconazole & tolnaftate & oral terbinafine but don't know if it were to be of any help since i had to stop taking terbinafine due to muscle & joint paint that i developed while taking it that was activated by sun. not sure what type of fungal infection it is but it also spread to my ears it itches behind my ears and my hand itches it's red behind my ears & my vagina skin red too no bed smell no white cheese discharge but there is some white on my toe and it' peeling  my nail on same to is crumblingband getting shorter then before this infection & it turned yellowish dark color and so the next two toes next to it
1 Comments
See the answer to the message I sent you.
Avatar universal
What helped me was taking sporanox every day. It finally got rid of the vaginal yeast infections which irritated me the most. I now take it about 3 times a week and get liver function test every 3 months. Now I have an itchy scalp and have had toenail fungus for 3 years. I even had the toenail laser treatment.
Avatar universal
I am currently going through hell with this I am desperate for help been to see 3 gp's none of which believe I have it ... I know I have it's driving me crazy I need help to get rid of this horrible infection
1415174 tn?1453243103
COMMUNITY LEADER
Do you have a yeast infection as well? What treatments were you on?
mkh9
Avatar universal
Hi mkh9-I was wondering if this is the only way to speak with you or if you prefer or have a different way of communication? I am suffering severely & I would really love your input and maybe help from you. Thank you so much and I will keep an eye out for your response here.
1415174 tn?1453243103
COMMUNITY LEADER
Why don't you start your own question on here. It would be easier for me to see you.
mkh9
Avatar universal
I just happened upon this site and noticed that you know of a specialist in or near Santa Monica. I have been to perhaps 25 health care professionals in the past 20 years looking for answers to my Candida problem. I was required to take antibiotics for nearly 10 years to clear an ongoing urinary infection. The result is I am what is called a ''universal reactor.'' Along with the Candida I am allergic to foods, chemicals, etc., etc. I just have not found anything that works. To say this has ruined my life is a fair statement. So depressed. I live in Santa Monica….maybe I have been treated for the wrong type of Candida..
Can you help in any way. Thank you.
1415174 tn?1453243103
COMMUNITY LEADER
Sorry to hear you have been through so much. Some strains of Candida are more resistant than others. Have they performed a culture on you? I think it would be good for you to get "patch tested" to see exactly what things are causing your allergies or hypersensitivites. I have similar problems with especially topicals. Sometimes there is one ingredient such as the carrier of the topical that is in a lot of different ones. Also, that could happen with some of the prescription drugs. Also, you may have a higher immune system like I seem to have but not autoimmune. I never heard of the term Universal reactor. I'll have to look that one up. That is new to me.  I am not sure if you are looking what would be best for you to see since you have been to a lot of doctors other than doing this kind of patch testing first. It is not the standard allergy tine testing. They do it here in San Diego. But may someone there in Santa Monica. But I don't know anyone there that does that. What kind of help are you looking for?

What type of infection did you have? Was it bacteria or yeast only?  Don't give up. I know it is hard. But you can get out of this. I am slowly finding that some drugs and chemicals are not really what I thought while other are a definite problem.

Regarding the yeast as I mentioned in the other posts a lot of the yeast are resistant to the anti-fungals that end in Azoles. Examples are Fluconazole, Miconazole. But are sensitive to Terbinafine (Lamisil). You could get tested for a particular drug allergy and see if you are not allergic or patch test for hypersensitivity to what you want to try and see if you can take it.  

There are also natural things like Tea tree oil and cranberry juice which . Tea tree oil is a topical and the Cranberry changes the Ph. But I don't know if you can drink that or not. Also, it usually works on bacteria I don't know if it works on yeast.

I can try to work with you. But you need to find a good dermatologist that does patch testing in your area.  

Let me know what you think?
mkh9
Avatar universal
I am writing to you wondering if I have yeast overgrowth. I am a 23 year old male living in Jefferson, OH and I believe that I got this from sleeping in a moldy basement for about a year. It all started after I slept in the basement for about a year and I ate a high carb diet that included a lot of oatmeal, chips, cookies, noodles, bread, etc. One night while I was asleep I was awoken to a very bad feeling in my body. It felt very strange and that I was "high" on medication. I'm not sure how to explain it, but the feeling was terrible. After that night my stools began to get worse as days passed. Eventually I couldn't go without stool softeners and it takes up to 3 days.

I called my doctor and made an appointment, but he just gave me miralax (for my constipation) and sent me back home. Eventually I got food allergies very bad. I couldn't eat eggs, meat, prunes, corn, dairy, grains, and I get very strange feelings when I eat any of them and also severe bloating and horrible constipation. I decided to go back to the doctors and they told me to see Gastrologist. They told me to do an Endoscopy and Colonoscopy and they found nothing wrong with me. After that I was still having problems and a few new ones happened. My stomach makes a loud sloshing sound like water is inside, especially when I eat wheat, I have terrible brain fog and memory loss and the constipation turned worse. I went back to the doctors and they checked my thyroid, cholesterol, urine, and did blood tests, but all came back fine. At that point I went and seen an allergy doctor to see if it was a food I was eating. A few foods showed medium allergy results, but nothing severe. I stopped eating those foods and the constipation got worse and so did my mental health.

I am now going to see an Infectious disease specialist hoping they can help find what is wrong. I still have a bunch of food allergies and severe constipation. The only thing that helps is stool softeners, but that seems to be slowly not working. Is there any way I can stop this?

Thank you,

Kevin
1415174 tn?1453243103
COMMUNITY LEADER
Hi, we are not doctors on here but I am a clinical microbiologist and I can say you can't get a yeast infection just from eating starches in and of themselves. But being in the basement can possibly give you a respiratory or other type of fungus or other infection. So I would pursue that, as you are thinking of doing, with the infectious disease doctor. I think you haven't found the source of your stomach/intestinal problems. It may be related to food or having a problem like Crohn's disease, irritable bowel or some other intestinal problem. But perhaps the colonoscopy and endoscopy ruled those things out. So perhaps you can do an elimination of one food at a time and add them back in and see what triggers some of the problems. Since you have symptoms of Lyme you might want to get tested for those things too. Lyme can cause memory issues, brain fog etc. too. So you may want to get tested for that just in case. But if you get a fungus some can affect the brain. So maybe getting an MRI of the brain to see if there is anything wrong. They would be able to see a fungus ball or any other abnormality there too. Just some ideas.
Regards,
mkh9
1 Comments
mkh9 I was exposed to aspergillus (cultured, confirmed) twice in my eye. Was told it lived in crappy a/c vents & lived in this space for 4 years. Otherwise healthy 30 year old my life has become hell, my doctor actually wrote "parapsychosis" in my chart when I mentioned that I believed my suddenly chronic chest/sinus/eye & skin issues were the result of the fungus. He refuses to test, treat or refer to a specialist. Is a "clinical microbiologist" the correct doctor to see? Right now my homocysteine levels are at 19 and this is destroying my life. I've read through the comments and cannot seem to see even a referral for the TYPE of doctor one would see in order to diagnose and treat this condition.
Avatar universal
I understand your frustration.
You need a referral from a Dr.  AND FOR WHATEVER REASON THEY CAN'T GET BEYOND STANDARD CARE. OR EVEN TALK ABOUT FUNGUS.  I asked Hematologist to test me for yeast/fungus, he said in a sharp tone, Iam here to test you for Leukemia, I said WHAT???? I don't have Leukemia, Please test me for yeast. HE REFUSED. He did have to call me and tell me I did not have Leukemia.    Demand,  to see the REAL infectious disease Specialist THAT Specialize in FUNGUS. Standard testing does not show invasive fungus.
Great Article today FROM THE CDC, Finally talking about FUNGUS.  It also said:  It is EXPENSIVE and TIME CONSUMING TO TEST,
50 People a week are calling.  The Dr. I am trying to see,  said.  They Take the SICKEST First.
And lastly the CDC said, the outcomes are usually not good. The infectious disease Drs. are in the Hospitals where people are really sick, and from what i've been reading, is a breeding ground for Fungus in the first place.
I Myself am going to Go to China, I hope, and check into a TRADITIONAL CHINESE MEDICINE HOSPITAL.
Check them out!
I had Hep C and got involved with a man that had "jock itch". Between his butt crack.
Not only did he not tell me, he brought me a letter stating HE could NOT pass it to me from his Dr.s Nurse .  From day one bladder infection and 3 yrs of antibiotics , the three rounds of cipro dang near killed me, the reaction. They just kept prescribing. So no vaginal yeast infection shows on standard testing after years of antibiotics.
The Good News is the Harvoni worked and my liver Dr. was the one that kept telling me my white count was elevated.  Four almost 4 years I've been going from one to the next. My liver Dr. Said i am cured. So he didn't want to talk about it.
You are Not alone, you are Not crazy, start demanding, call the CDC, call the Researchers ask about clinical studies, there are lots going on.  In Today's World, you have to fight for your life. BE YOUR OWN ADVOCATE.
Prayers and Blessing to ALL
Avatar universal
On Oct 9, 2013 you had mentioned that you knew of a specialist in Santa Monica and it seemed at that time it was just a matter of you remembering his/her name. If this counts as a referral, I do apologize for asking but I am not really looking for a referral as such. I am just trying to gather as many local resources as possible in order to spare myself the expense of traveling out of state which I cannot afford. If you would/could remember this person's name, I certainly will not look at it as any sort of endorsement.  It's just that I am a Kaiser patient and they will do as little as possible for me unless/until I bring them a third party outside opinion. Then all of a sudden a whole slew of resources are now available. Thank you again.
Avatar universal
C. Parapsilosis....doesn't show up in blood tests but may show up in nasal or ear wax discharge during infections
2 Comments
C.parapsilosis can be seen in blood by PCR (molecular tests).
mkh9
Hello! ive had a vaginal yeast infection for MONTHS now, I have had several cultures come back positive but no treatment seems to work.  My last culture came back positive for C. Parapsilosis and supposedly Fluconzole was supposed to treat it.  I am now on a daily dose of 200mg fluconazole alone with oral Lamisil for 6 weeks.  I am almost at 2 weeks of treatment with ZERO improvement.  Is there anything else I could try?  Does this treatment just need longer to work?  I am at the end of my rope with this!
Avatar universal
Hello! ive had a vaginal yeast infection for MONTHS now, I have had several cultures come back positive but no treatment seems to work.  My last culture came back positive for C. Parapsilosis and supposedly Fluconzole was supposed to treat it.  I am now on a daily dose of 200mg fluconazole alone with oral Lamisil for 6 weeks.  I am almost at 2 weeks of treatment with ZERO improvement.  Is there anything else I could try?  Does this treatment just need longer to work?  I am at the end of my rope with this!
1 Comments
Hi Erica I;ve also been suffering from the same problem with very little to no improvements for the past 5 months . Right now Im taking oregano oil and grapefruit seed extract, probiotics along with a weekly dose of diflucan and hoping for the best. The best advice I can give for the constant yeast infection is collaidial silver gel. When inserted it kills yeast on contact and kills the itch without the burning sensation like youd get from monistat . This will not cure the systemic yeast overgrowth but will help you feel 1 million times less irritated as you treat yourself . I will soon be getting an endoscopy done and Im happy to keep you updated if I find anything that works and please do the same !
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