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A lot of fantastic ideas on this thread. On the mold issue, if you've seen mold in your ducts it makes sense to do both the genetic testing and test your house. We did the HLA tests through LabCorp. We found that I'm mold susceptible and my ds is both Lyme and mold susceptible. A good place to start on the house is the ERMI test from Mycometrics. I think it was $300. A mold expert we brought in told us that the ERMI looks for mold DNA, so it can be live mold or the DNA from mold that is no longer living. The reason to look at it from that aspect is that the mold toxins can still be around after the mold is dead. Our ERMI test was very high and we couldn't smell mold at all - nor had we seen any at that point. All air testing came out perfectly clean. In the end, we sold our house because by then I was too sick to deal with a remodel/remediation. I have to say, that after I was treated for 4 weeks with cholestyramine, I could suddenly detect a strange smell in our house (when I went back to meet with the realtor). If you are open to moving, and have seen mold, I would do that (before you test your house) and test any future house before you buy it. Remediation is very expensive and can easily be botched.

 

On the trifecta.... yes, absolutely. In fact, it is very common for people with Lyme to become susceptible to mold toxicity. I don't know if the Lyme "turns on" the genes involved in mold detoxification or what, but it's very common. And many Pandas/PANS kids seem to have Lyme & co as underlying infections. It seems highly unfair, I know.

 

On the yeast/fungal treatment success, I don't think those medications impact mold toxicity at all. You have to treat it with cholestyramine to start, and then some other medications. Mold is something that needs to be pulled out of the body as a toxin, not something you need to kill, like yeast. So you may want to test for yeast and see if that needs to be addressed too.

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I agree with mama.

 

Treat mold by pulling toxins out with cholestyramine and removal from toxic environment (or removal of toxins). My experience was that mold was underlying cause of all our other suspected illnesses. Changing my family's environment was the first step in successful treatment. Second step was cleaning up our diet. I'm now investigating how to heal the leaky gut to be rid of all our food intolerances for good (looking into GAPS diet for that now).

 

Mold...it is a nasty, nasty, devastating problem that is invisible. I have found most mold testing to be unreliable except for the ERMI testing recommended on Shoemaker's website. I prefer to use Mycometrics for ERMI lab testing.

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I agree with mama.

 

Treat mold by pulling toxins out with cholestyramine and removal from toxic environment (or removal of toxins). My experience was that mold was underlying cause of all our other suspected illnesses. Changing my family's environment was the first step in successful treatment. Second step was cleaning up our diet. I'm now investigating how to heal the leaky gut to be rid of all our food intolerances for good (looking into GAPS diet for that now).

 

Mold...it is a nasty, nasty, devastating problem that is invisible. I have found most mold testing to be unreliable except for the ERMI testing recommended on Shoemaker's website. I prefer to use Mycometrics for ERMI lab testing.

I think this makes sense. I have talked to our LLMD who we will see within the next week to ask if he can test for mold, also (through ART). Maybe I need to have her do the blood gene test when we get back. I assume that if our LLMD finds mold through ART he will prescribe cholestyramine, but if he doesn't....do most naturopaths do that? How else could I get it?

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A lot of fantastic ideas on this thread. On the mold issue, if you've seen mold in your ducts it makes sense to do both the genetic testing and test your house. We did the HLA tests through LabCorp. We found that I'm mold susceptible and my ds is both Lyme and mold susceptible. A good place to start on the house is the ERMI test from Mycometrics. I think it was $300. A mold expert we brought in told us that the ERMI looks for mold DNA, so it can be live mold or the DNA from mold that is no longer living. The reason to look at it from that aspect is that the mold toxins can still be around after the mold is dead. Our ERMI test was very high and we couldn't smell mold at all - nor had we seen any at that point. All air testing came out perfectly clean. In the end, we sold our house because by then I was too sick to deal with a remodel/remediation. I have to say, that after I was treated for 4 weeks with cholestyramine, I could suddenly detect a strange smell in our house (when I went back to meet with the realtor). If you are open to moving, and have seen mold, I would do that (before you test your house) and test any future house before you buy it. Remediation is very expensive and can easily be botched.

 

On the trifecta.... yes, absolutely. In fact, it is very common for people with Lyme to become susceptible to mold toxicity. I don't know if the Lyme "turns on" the genes involved in mold detoxification or what, but it's very common. And many Pandas/PANS kids seem to have Lyme & co as underlying infections. It seems highly unfair, I know.

 

On the yeast/fungal treatment success, I don't think those medications impact mold toxicity at all. You have to treat it with cholestyramine to start, and then some other medications. Mold is something that needs to be pulled out of the body as a toxin, not something you need to kill, like yeast. So you may want to test for yeast and see if that needs to be addressed too.

Oh, the moving issue....ugh. I am afraid that we could move into the very same situation. We have four rent houses, and I have seen moldy vents in at least two of those....particularly during a hot, hot summer where I assume mold is so easily made due to ductwork in the hot attic and condensation forming. We have talked about moving to our favorite place...Colorado, but then there are basements.....Guess we'll think about all that again.

 

What kind of doctor to we see to get cholestyramine.....assuming our LLMD does not write a script?

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Inexpensive anti-parasite:

 

Boil a few cups water, after done boiling add handful of chopped cilantro and let seep about 10 min. After it has cooled down, add a spoonful of organic miso. Quite tasty. Drink daily per Dr. KI'

I will try that. I know that parasites have been an issue for her. She is currently taking Alinia, and we have done some other anti-parasitic treatments, but maybe not enough.

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Be careful with cholatyramine. I believe it can make some people VERY depresses. You may want to research it.

Just wondering why you think it causes depression? I've never heard of that, though both by son and I had serious herxes when we took it 4 times a day. His anxiety went through the roof for that month - it was very clear that it went way up the first day and went way down a couple of days after he dropped down to once a day. For me it was pain - terrible pain for the month I was taking it 4 times a day, but then once I decreased to once a day, my pain level dropped to far below what it had been pre-treatment.

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A lot of fantastic ideas on this thread. On the mold issue, if you've seen mold in your ducts it makes sense to do both the genetic testing and test your house. We did the HLA tests through LabCorp. We found that I'm mold susceptible and my ds is both Lyme and mold susceptible. A good place to start on the house is the ERMI test from Mycometrics. I think it was $300. A mold expert we brought in told us that the ERMI looks for mold DNA, so it can be live mold or the DNA from mold that is no longer living. The reason to look at it from that aspect is that the mold toxins can still be around after the mold is dead. Our ERMI test was very high and we couldn't smell mold at all - nor had we seen any at that point. All air testing came out perfectly clean. In the end, we sold our house because by then I was too sick to deal with a remodel/remediation. I have to say, that after I was treated for 4 weeks with cholestyramine, I could suddenly detect a strange smell in our house (when I went back to meet with the realtor). If you are open to moving, and have seen mold, I would do that (before you test your house) and test any future house before you buy it. Remediation is very expensive and can easily be botched.

 

On the trifecta.... yes, absolutely. In fact, it is very common for people with Lyme to become susceptible to mold toxicity. I don't know if the Lyme "turns on" the genes involved in mold detoxification or what, but it's very common. And many Pandas/PANS kids seem to have Lyme & co as underlying infections. It seems highly unfair, I know.

 

On the yeast/fungal treatment success, I don't think those medications impact mold toxicity at all. You have to treat it with cholestyramine to start, and then some other medications. Mold is something that needs to be pulled out of the body as a toxin, not something you need to kill, like yeast. So you may want to test for yeast and see if that needs to be addressed too.

Oh, the moving issue....ugh. I am afraid that we could move into the very same situation. We have four rent houses, and I have seen moldy vents in at least two of those....particularly during a hot, hot summer where I assume mold is so easily made due to ductwork in the hot attic and condensation forming. We have talked about moving to our favorite place...Colorado, but then there are basements.....Guess we'll think about all that again.

 

What kind of doctor to we see to get cholestyramine.....assuming our LLMD does not write a script?

 

It's very important to move out of the moldy environment before you start treating. You can use an ERMI kit to test any place you might move into.

 

I would post and ask for a referral in your area to a doctor experienced with mold toxicity. I only know of N. California doctors.

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Be careful with cholatyramine. I believe it can make some people VERY depresses. You may want to research it.

Just wondering why you think it causes depression? I've never heard of that, though both by son and I had serious herxes when we took it 4 times a day. His anxiety went through the roof for that month - it was very clear that it went way up the first day and went way down a couple of days after he dropped down to once a day. For me it was pain - terrible pain for the month I was taking it 4 times a day, but then once I decreased to once a day, my pain level dropped to far below what it had been pre-treatment.

 

 

Depression is probably another part of the herx that you observed mama2alex. My herxes usually involve depression/anger, DD's anger.

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