Fungal Ball in sinuses

[mdmom]

Also posted on PANDAS board...

 

DD13 (non-PANDAS kid) has had a headache for 37 consecutive days. CT scan showed cloudy sphenoid sinus, which is the one located in the center of the head. ENT visit today was enlightening. Instead of assuming the sinusitis is caused by bacteria as most docs do, the doc quickly diagnosed my daughter with a fungal ball (a.k.a. mycetoma) that will have to be removed surgically. Considering all the talk of sinuses lately on this board, I thought this might be of interest to others out there dealing with chronic sinus issues.

 

I'm thinking it is a huge piece of the puzzle, as her recovery from co-infections has been very slow despite aggressive treatment. Doc is also going to culture sinuses for Staph, MRSA, etc.

Edited February 15, 2013 by mdmom

[Familyof5]

This medical mystery show may be of interest to you...not sure if it is the same thing, but worth considering...

 

http://www.survivingmold.com/news/category/television/

[sf_mom]

I would also consider some type of aggressive anti-fungal along with removal of ball in sinuses or it may continue to be ongoing problem even after ball is removed.

 

We had no physical indication of yeast/fungal issues until we did comprehensive stool analysis and treated 'very' aggressively. Our children were on typical dose of daily nystatin which did not help. Now that they are on 2,000,000 un per day of nystatin and we have had recent yeast rashes (eczema) and fungal rashes (ring worm and one other fungal rashes) appear. Our Dr. feels strongly the entire family needs to be treated all at the same time as yeast/fungus is contagious. If you are unable to get prescriptions for entire family I would recommend naturals. If it continues to be an ongoing problem even after aggressive treatments you'll need to consider heavy metals as they can really trigger proliferation of both.

 

Glad you are also checking for other infections in sinuses.

[mdmom]

I am really stumped by the diagnosis myself, as this is what we have treated with since May 2011:

 

DD 13 and DS15: daily Flucanozole (oral), 4 tabs Nystatin daily; then we switched to IV Fluconazole 3x week and oral on alternating days; for the last 8 months they have been on Voriconazole (VFend) IV and oral on alternating days + Nystatin

 

DH and myself: daily Fluconazole, Nystatin then switched to Nizarol for a short time, then back to Fluconazole with Nystatin.

 

We also used Mycelex lozenges occasionally.

 

So I am left with wondering if we have a mold problem. Yes, it's likely as I mold grows quickly in the toilets between cleanings and I find it in the shower often. But we are financially in a hole after treating for so long that I am unable to pay for remediation and we cannot afford to move.

[sf_mom]

Since you've been treating so aggressively for a while now, I would suspect there is an environmental source. If your children are making advances with Lyme treatment then I would check for heavy metal issue first in one child (co-pay was about $200.00). If it is an issue then consider testing other family members.

 

If your children are stalling out with Lyme treatment then perhaps check HLA and inflammation markers in one child (these tests should be covered by insurance). If there are indication of an inability to detoxify mold and there is inflammation potentially indicating mold, then I'd have your house officially checked for mold.

 

So sorry this is an ongoing issue. For us, we are addressing heavy metals first as our children continue to make advances with Lyme treatment. However, if we stall out after heavy metals are addressed, I can assure you we will dig into mold issue further.

[mdmom]

SF Mom-

Thank you for the advice. I really feel like my children's progress has been slow and I think you are correct in suggesting that I pursue additional things like mold and heavy metals. DS has been on daily IV treatments since Jan 2012 and DD has been doing the same IV treatments since March 2012. It seems like we are going nowhere.

 

We will see the LLMD next week and she may know this, but can you tell me what tests to order to check for heavy metals? Also, when you refer to testing for mold sensitivity and inflammation, are you referring to the tests that Shoemaker outlines on his Surviving Mold website?

 

Thanks again.

[sf_mom]

We used Dr. Data/Genovia for heavy metals. With me, initial test was a DMSA challenge. With the children, it was slightly different as we did not challenge with the initial testing. Now, we are pursuing challenge test to confirm they are actually dumping with DMSA. If not, we will challenge again with a different chelator to see if they are dumping, etc. I am fairly certain your LLMD is well versed in testing/challenging for heavy metals and should have test kits available. I would also re-emphasize with your Dr. at next visit the ongoing yeast/fungal issue being potentially triggered by heavy metals. If there is a heavy metals issue you will need to also look at vitamin and mineral deficiencies. Unfortunately, it is all related but by addressing each of these issues you will be helping to unburden the immune system.... bringing your entire family closer to recovery.

 

As for mold, yes I would test the inflammation markers that Shoemaker recommends. It been a while since I've actually read his website so I am not sure if he specifically recommends HLA markers. A friend who is dealing with mold recommended these specific tests to me. I am sure your LLMD is also versed in testing for specific markers.

 

I can appreciate how expensive all the testing can be. If you are methodical, hopefully you can lower the ongoing financial burden so its not such a huge hit all at once. I think by testing one child, it will give you at least a potential direction. After finding all our children had lead issues we tested our water and of course it had the highest response to lead. We were using a Britta filter previously but it doesn't filter heavy metals. Lead can also be in bottle water so don't assume its safe.

[mdmom]

I know our LLMD suspects heavy metals with our son, but she has told me repeatedly that he is too fragile for chelation, as it can be a shock to the system. It's so hard knowing when to address each thing.

 

We just started monthly IVIG and he's responding well - I believe it's because we've worked so diligently at knocking down his infection load.

 

Daughter is a whole other issue, but clearly has more going on than infections.

 

Thanks for giving more ideas to pursue. Sometimes you just hit a plateau and it's good to have a new plan.