Hubby possible carrier, then Lyme, now MOLD!

[airial95]

So I posted a couple of weeks ago that my husband's strep titres (tested through Dr. were high and he may be part of our recurring strep problem. Thanks to our Rock-Star pediatrician - he got on abx immediately (since it would be a week until he could get in with his PCP.)

 

Last wednesday we had our follow up phone consult with Dr. B. As he was going through my son's blood results - it was pretty much more of the same old-same old - everything normal - until he got to the Lyme results - positive bands 66, 58, 30. We hadn't run Igenex yet (mix up with his office at our visit), so this was the standard Western Blot. I don't have the exact results yet - I've asked his office to send them over but haven't gotten them yet. He did say that based on the IgM numbers the infection looks farily recent - within the last 6-12 months or so.

 

Eitherway, he's running Igenex for co-infections and has us on Augmentin and Azithromycin.

 

Okay - we've always been classic PANDAS - with no reason to believe/suspect anything else at play here. So to all the moms who push Lyme testing - feel free to insert an "I told you so" here

 

As dejected as I was about the Lyme connection (it's a whole new set of research and learning I have to do...not looking forward to it!! Any suggestions on a "Lyme for Dummies" website would be welcome!) - at least I felt that we had 2 new pieces of the puzzle at work.

 

Our biggest issue (or so I thought) was that our son REFUSES to take the Azithromycin. The Augmentin we can crush and put in a variety of things and he'll take it (most success has been a PB&J sandwich and chocolate chip pancakes!) - but the Azith is just too bitter for him to mix with anything (we've tasted it - can't blame him...) Since our original foray into pill-form Augmentin last month, we've worked on getting him to swallow pills - he can swallow tic tacs, M&M's and Skittles like a champ. The second you but a pill in his hand to do the same - full blown anxiety - starts ticc'ing like crazy, creating rituals - it's terrible. We've lost 5 Azith pills and 2 Augmentin's so far since we started them on Friday (I just ordered a pill swallowing cup recommended by a friend who's a PICU nurse...I'll let you know how it works when we get it.)

 

If that's not bad enough - on Friday night our A/C went out - again (just got it fixed in March). Not something you want to happen in August in Florida. By Saturday afternoon, hubby had to admit he couldn't fix the problem and had to call an A/C guy. Our coil was rusted beyond recognition...either $2k for a new coil (which they stopped making in 2010 and would take up to a week to get), or $6,500 for a total new system - with 10 yr warranty and UV mold protection they could get installed within 24 hours. Our house is only 9 years old, so we didn't think that we'd need a new system this soon - but it has been a common thing in our neighborhood - apparently the builder used the lowest bid on the systems...

 

The tech said that he did see a bit of mold on the drip tray in the garage, but it looked farily recent, most likely from the unit freezing up several times last week. Okay - I'm officially freaked out. Mommy and the kids are off to a hotel!!!

 

Well, on Monday - they came to replace our entire system - when they pulled down the air handler it was COVERED in mold - black, green and white. The unit, insullation, and even up through the duct work. We had NO IDEA and had no reason to believe it would be there.

 

Ended up paying an extra $1k to have all the ducts cleaned and sanitized. Great - now we're up to $7500.

 

Took my PANDAS son to the ped yesterday b/c he came down with Pink Eye on monday night (when it rains it pours!!) As I was updating the ped the results from Dr. B, I asked if the mold we discovered the day before on the old A/C unit might be a contributing factor to our 20+ positive throat cultures in 2 1/2 years - he said absolutely. Asked us to get a sample that he can send off for testing.

 

Then he asked - do you have any carpets in the house? Uhhh - yeah, why? Oh - I would get rid of them too - with the humidity from the A/C being out and the spores being air borne - it's not a bad idea.

 

My hubby reasearched it a bit yesterday (he's an environmental engineer, so these things aren't entirely foriegn to him.) and needless to say, we have 3 different flooring contractors coming over the next 2 days to give us estimates to have ALL of the carpet in our house replaced with hardwood or laminate (we're still debating what we want with 2 dogs and 2 kids!). We're looking at at least another $2,500 - $5,000 depending on what we choose.

 

So - yes, the mold may be another piece of the puzzle, but considering we're out $13,000 in 3 days, I must say I'm wondering if I need to stop playing with puzzles for a while!

[SSS]

Oh dear. I feel for you. When we went through the mold thing last year, I was over the top with anxiety- the mold inspector was actually a little afraid of me.

 

You are a wonderful mother- you will get through this- one foot in front of the other-

 

Hang in there----

 

P.S.

Before my dd could swallow pills well, we got her Azithromycin compounded liquid-

Edited August 8, 2012 by S & S

[LNN]

Last summer, I went on the mold roller coaster and my husband almost divorced me when, on the hottest day in July, we spent 6 hours loading a rental cargo van with nearly everything in our basement and made 4 trips to the dump. Musty cardboard boxes, old sheet rock, left over insulation... Then I got crazy looking elsewhere - found a leak under the kitchen sink that left mold under the false bottom of the cabinet, went nuts cleaning mold in the window frames where moisture condenses, know i was being paranoid but couldn't stop. And then I found gobs of the stuff on the drum of my washing machine, on the side that doesn't show when you look inside. Had to take it apart to get to it. I wrote about it in the Latitudes magazine a few months ago. That made a huge difference for me and my son. A stupid washing machine!

 

You can drive yourself nuts - and broke. We've replaced one rug with a wood floor and one carpet with a new carpet (yes, I'm a bad mom, but in new england, hard wood floors get really cold and I wanted at least some carpet - there's a balance that has to be struck).

 

So I think you're right to replace the system and you should absolutely look at remediation. But educate yourself first - doing it wrong will be a waste of money. And take some time to catch your breath. Your house is no more toxic today than it was yesterday. Nothing's changed except your knowledge. Yes, address the problem. But you can prioritize. You can live on subfloor for a few months if you need to. You don't need to go bankrupt and do everything right this minute. Catch your breath. There are several Pandas moms on the lyme forum who've been in your shoes. Post over there if you haven't already.

 

I do think we collectively need to create a lyme/mold/Pandas book for dummies. But part of it is a process. I don't know that you can absorb all there is to know all at once. Sometimes, it takes thunderbolt experiences like you had before you can make room in your head for one more possible money pit to explore. But as S&S said, one step in front of the other and you'll be able to get thru it. Just try to stay calm. it's the single most important piece of advice I can give (now if I could only follow that advice).

 

Edit - forgot to add that zith+augmentin is far from your only abx combo option for lyme. That combo never did squat for my son, tho it does help others. We've used bactrim, zith, augmentin, omnicef, rifampin and tindamax in various combos for various lengths of time. Rather than fight the zith battle, see if omnicef might work. Ask your pharmacist which liquid abx can be flavored. (bactrim liquid was acceptable to my kids but the pill form was horrible and was spit out more times than I can count). Read up on handling herxing, especially with mold in the picture. Then I'd start looking for an LLMD and get on the waiting list, which can be quite long. You can always cancel but 3-4 months from now, you may be glad you have an appt with one. I give Dr B credit for looking for lyme. But Pandas is his specialty. Between the lyme and the mold and being on the opposite side of the coast, I think you're going to need an LLMD at some point. But for now, you can ask for a second abx other than zith.

Edited August 8, 2012 by LLM

[sf_mom]

Recovery is a journey! I am glad to read you are discovering issues that may make huge advances for your family.

 

When my friend went to replace her hardwood floors she found black mold under them!!! So, you are not alone in tracking down mold and finding it to be a problem. We've done the obvious stuff to abate when we moved into our home, repaired all obvious leaks, cleaned heating ducts, replaced all carpets, painted, new washer/dryer (regularly use TechnoFresh to clean out washer pipes), etc. AND, I am still not convinced we don't have mold/fungus issues as our house was built in 1951. We are doing ART muscle testing and done some lab work for mold and none of us appear to have a problem with mold/fungus which does give me some comfort. However, I just recently learned of a way to flog your environment so you don't have to replace surfaces potentially, I have no experience with it but happy to share what I know privately.

[Dedee]

I am so sorry to hear about all you are going through. That is a lot to swallow all at once. Sounds like your husband is handleing it well. I have to say I am suprised about your Lyme diagnosis as well. Things always seemed so strep related from all your posts. However, when you go through everything you have gone through without getting resolution and then get positive bands, you can't ignore that flashing red light.

 

We also recently got a Lyme diagnosis and my kids have been on combo antibiotics for a couple of weeks now. We have seen some herxing initially and now are starting to see some improvement although my daughter is still complaining of lots of physical complaints. That has helped give me validation that I am doing the right thing. Her herx reaction is very typical of what we were told to expect if she had Lyme. It is almost scary. The LLMD we saw talked to us some about the discussion that some doctor's are having about the link between PANS and Lyme. She said they aren't really sure whether the PANS makes the child more susceptible to tick borne illness or whether chronic lyme makes the kids more susceptible to a neurologic reaction to strep but they do believe there is some sort of link there. It's an interesting concept anyway.

 

I really hope you get some resolution to all your issues soon. I will be praying for your family. This is all more than any one family should have to deal with at one time. You have been through some really hard times and I know you will get through this also. You are very strong. Keep your chin up and keep in mind that you are on your way to healing.

 

Dedee

[airial95]

Thanks for all the support - it just seemed like a whirlwind few days. We were very surprised to find the mold - our home was built in 2003 - and we were on site daily during construction. We've never had anything happen that would've let us suspect we had mold!

 

Fortunately, hubby is an environmental engineer and knows all sorts of folks who are helping us figure out what we NEED to do vs. what is overload.

 

I've often noted in posts where folks lament how their significant others respond to PANDAS or our obsession with it, and I've often said that we went through the same thing - I always thought he didn't care as much since he wouldn't do the reading, deal with the dr's etc...until he told me that from almost day 1 of our dx he had been working the money behind the scenes so we would be prepared/survive financially - and be able to have access to quick cash if needed for IVIG and PEX.

 

He hasn't said it - but I think he's proud of himself that for once it's going to be HIS efforts in this battle that are going to save the day!!!