Mold worries - can somebody help me?

[mdmom]

LLMD admitted today that I have 2 of the sickest and slowest-progressing kids that she's ever seen. Lyme, Bartonella, Babesia, EBV, Mycoplasma, Strep.

 

They both have central IV lines and we've been treating with IV meds for 18 months.

 

Son also gets HD-IVIG once a month.

 

Tons of supplements and ILADS protocols are being used. Yes, we have addressed methylation too.

 

Daughter is mold susceptible according to HLA testing.

 

Tested C4a in both children and both were normal.

 

LLMD put calls into 2 of the well-known LLMDs to ask advice.

 

I'm thinking it has to be mold that is slowing their progress. I don't want to test my home b/c I don't want to have to disclose a problem when I sell the house. We also have no money to remediate if we found mold.

 

Any ideas?

 

Would any of the MOLD gurus out there be willing to talk to me via phone?

 

I am ready to walk away from my house and I'm scared and sad.

 

Thanks.

[mama2alex]

Please PM me. I'm no guru, but we have been through this (still going through mold treatment). I'll help you figure this out if I can.

[mar]

My ds has mold allergies also. Do you actively see mold in your house? We moved into our house newly built 11 years ago and last year found mold in attic? It was not active black mold but still scared the heck out of me!!!!! We got that fixed and yes 2600 dollars later:( this did not made things better for dd because he was already healing through diet and all. But yes mold can mess things up and really needs to be looked into. We also had an incident several years ago prior to this where ds was waking up sneezing and congested every morning. This was in the first year of all the craziness. He had a dresser in his room with a side door that opened up and had all his doctor Seuss book collection in it. I will never forget the day he comes into my bed in the morning to read books and I am half blind bc don't have my lenses in and says mom this book has black stuff on it. I jump out of bed and put glasses on and book is covered in black mold!!!!! How the ..... When!!!! I take the book go into his room and see an other book and basically through out the whole collection and had dh get rid of the dresser with was probably fine that was my crazy time. Had a portable hepa air filtration going in his room. He woke up the next morning with less congestion and coughing!!!! My ds who has mold allergies was sleeping in a room with mold!! Still boggles my mind on and why that happened but my point is that I seen a sudden difference and it could definitely make things worse. I am definitely not a mold expert but just know it made a huge difference for him especially when he is allergic. At that point I went thought every thing in every room and pretty much was a mad women and moved furniture and dusted and cleaned and made sure their was no hidden mold! Stay strong and look around . If the problem is minor look on line to help with getting rid of it. Not to scare you but defiantly think its a concern especially for children who are suffering with allergies or a lowered immune system. I don't know if I can help but I am here if you need me.

Mar

[tpotter]

Have you considered getting an ART evaluation. This can tell you what actually is going on, rather than just guessing. It is costly, BUT, so is 1 1/2 years of IV abx tx. Then, after evaluation, you can then decide the best course of action.

[mdmom]

Thanks everyone.

 

mama2alex - PMd you.

 

tpotter - would you be willing to share your ART practitioner's info with me? We live 1.5 hours from your area so we could travel there. We have a good one here who studied under Klinghardt, but I cannot afford him and he doesn't just charge for ART - he's an integrative dentist who puts everyone on TMJ therapy first b/c he says he have to correct TMJ in order to do ART. I believe this is true, but I cannot do everything at once.

 

Also have an appt with a PANDAS-friendly ENT for possible tonsillectomy for DS15. We cannot irridicate his strep - he must be reinfecting himself.

[airial95]

We were going through similar concerns - but with strep. No matter what we were doing, our son kept getting new infections, even when on major doses of abx. We began to suspect mold in the home (plausible after having found it in our AC system). After spending tens of thousands of dollars replacing the entire A/C unit, sterilizing the vents and even tearing out every carpet to replace with hard surface flooring - we were still worried about mold - and Chinese drywall (eventhough our house was supposedly cleared back in the scare). But like you - we didn't want to get tested because of disclosure/property value ramifications. We had one advantage in that we built our house brand new 10 years ago, and there have been at least no "events" that would cause mold (flooding, etc...)

 

We decided that if we didn't have the strep under control by this summer, we were going to move out of the house for 1-2 months and rent somewhere else (with strict criteria) to see if that made any difference. If it did, then we would sell - and likely build new again somewhere else. If not, then we could at least assume (for the time being) that the house wasn't the problem.

 

We wanted to wait until summer because it would be less disruptive to the kids for school, and we figured we could maybe find someplace on the beach or something and make a mini "vacation" out of it (even though we'd still be working.).

 

My son stopped getting strep in September when we added rifampin, and he responded wonderfully to IVIG in april, so we have put our summer plan on hold - but it's an idea.

[philamom]

mdmom- I'm not sure if this is the ART practitioner that tpotter uses, but Dr. Sw in Jenkintown, Pa is very good. He trained under Klinghardt. Let me know if you would like his info.

[Hopeny]

Could someone advise what is the best testing to do for mold and how much is it?

[sf_mom]

I would definitely look into the mold issue. BUT, like mold, heavy metals can also be a real stumbling block to recovery. Have you challenged for heavy metals yet?

 

I have always been worried about mold because we live in an older home but it was completely cleaned up 4 years ago prior to moving into the home. I would never have guessed all of us would have lead and mercury issues. Chelation along with Lyme treatment has really helped with recovery. Our DD that looked the most autistic of the three had the most amount of metals - 6 different with lead and mercury being the most predominate. She is struggling the most with treatment but making gains. Chelation has pushed the other two children into full recovery territory fairly quickly on their off cycle days.

[LNN]

Hope - do an archive search on ERMI testing - lots of discussion about it on the lyme forum about 2 yrs ago. It can be a real money suck. I got caught up in some of the panic and did take some steps but didn't do testing. I think if you're in a sick building, yes it can absolutely cause health issues and keep you from fighting chronic infection. But I also think you need to try to maintain balance. There is mold everywhere - inside and out. You cannot escape it entirely. You should absolutely take steps if you know you have a mold issue. But I just caution everyone to take a breath. You can drive yourself into a panic and spend lots of money and still not get well. You need to make sure it's the root of your problem or you'll be too broke to fix anything else.

 

MDmom - you say your C4a tests were normal. Now, there's some debate about which labs produce reliable results - Shoemaker used to insist that only Jewish Hopsital? (in Colorado?) had a good test. But they were bought by Quest and now you have less control over where your test is run. But assuming you can rely on your labs, even tho your DD is HLA mold sensitive, it doesn't necessarily give you a smoking gun that this is your problem. I agree that after 18 mos of an IV port, you should be looking for why they're not making progress. And yes, it could be mold. But have you also looked into other things? Pyroluria was a huge roadblock for my DS - once we found that, he made huge gains. Have you discussed other hurdles with your LLMD?

[Hopeny]

Llm we are buying a house so I figured it was a good idea to check while we are doing the inspections.

[mdmom]

philamom-

 

Please PM the info for Dr. Sw. Jenkintown is near where I grew up.

 

To all of you that have replied --

 

I cannot thank you enough for responding. I am always encouraged that there are others out there like me dealing with this "weird" stuff. Thank goodness you all understand.

[tpotter]

PMing you