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How many Dr's do you need?


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HI, My son is dx'd PANS on Jan 2012 and Lyme Feb 21, this year.

 

I am trying to make sense of all this and BAM! I discover mold in my house(2 types that aren't supposed to be in my house I'm told) I am glad I thought to test my house, people thought I was " over reacting" I am sick on top of it all. It's Not enough to have a kid w/ PANS,Lyme, and be sick yourself I needed to add more drama to my life.

 

My question is,

 

How many Dr's do I need to get to the "bottom" of all this?

 

an LLMD

 

and a PANS/DAN Dr too?

 

as well as a Naturopath?

 

 

Perhaps I should add a Psychiatrist in the mix too.........for me, not my son cause I am gonna need it it seems.

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A good integrative llmd can handle it all. Our local Lyme docs here recommend testing for mold when patients do not get well. My sister went thru the same thing. She got better when she got rid of the mold. Some even think it can suppress your cd57 count. Her dr told her to stay away from areas w mold like steamrooms. I think he said hot tubs r bad too. Saunas r great. When she taook diflucan it really helped her. Our Drs recommended checking for mold w a mold sniffing dog because they find stuff the tests do not. It was 350. I did it too and we didn't have anything significant.dr shoemaker has a book about mold that I plan to read next. U may want to check it out. Mold is often a big factor in Lyme/illness. My sisters son had asthma which has gone away w the mold remediation. Good luck!

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So sorry you are finding out all of this in such a short amount of time! The good side is it will allow you to heal faster. When I found out my son had PANDAS it was one thing to focus on, but with treatment, he never improved. That is when I decided to explore lyme and had our current dr. suggest getting the best dr. possible. It just happened that the lyme dr. that I found was an ND (Natureopathic dr.) in which a world-renowned dr. (MD) was also one of the dr. in the office.

 

An LLMD may be a good starting point for researching and finding a doctor but you may find another "type" of doctor who is just as good. Our ND has been great because she uses prescription, natureopathic, & homeopathic meds, so we get the best of all '3' types of doctors. The natureopathic/homeopathic side helps tremendously, not only with treatment which can be amazing, but also healing other organs in the body that need support from all the illness, meds. etc. The down side is that it is expensive since insurance does not cover most natureopathic/homeo meds.

 

The other part of my son's treatment that has been great is the 'muscle testing' done in this office. The dr. my son's sees is very high level in the technique, so she is able to start treatment before any tests are done and can treat things that tests may not even show (i.e. strain on the heart). Consistently, when she does do testing (blood work etc.), they have confirmed her treatment and diagnosis.

 

Just wondering if you did the ERMI test (DNA-$300) for mold? This is the test that we did and received a very complete list of molds (both indoor ones and outdoor ones) in our home. We had already removed mold from our basement over a 13 year period (probably not all of it was done correctly) and thought we had tackled all of it so our ERMI test results were a shock! Since then, after being totally overwhelmed by it all, we completely cleaned the inside of our house and everything in it, remodeled some old areas (found a little bit of mold), and now will be doing the ERMI test again next month to make sure the mold levels are low.

 

Our doctor recommended reading "Surviving Mold" by Dr. Shoemaker and did some of his recommended tests. Those tests came back with mold indicators which confirmed her diagnosis. My son (and now my husband) are detoxing big time. My Dh started detoxing 6 months ago because it made him feel so good. He is glad he started after having his first visit with my son's doctor last month and finding his 'mold' indicators high as well. They are both taking 20 little chlorella's 3xday and 3 salmon oils 3xday together before each meal.

 

Sorry this is so long, but I had some very helpful information on this forum which really helped get us on the way to recovery much faster.

 

Best wishes on continued healing.

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What's the best test for seeing if u have a mold issue?

The first indicator of mold, for my son, came thru the 'muscle testing'. We did some inexpensive tests first (petri dishes) and continued with other tests when his muscle testing showed it as still a problem. As of now, testing is not showing 'mold' as a problem just detoxing.

 

In Dr. Shoemaker's book he highly recommends the following:

MMP9

ADH

VEGF

C3a

C4a

TGF beta-1

VIP

 

You can read about Dr. Shoemaker at www.Survivingmold.com. This is fairly recent material (2010) so there are plenty of doctors that probably do not know about all of this. It seems insurance companies do since I just got a new home insurance policy and it specifically excludes molds/fungus. <_< There are training CD's on Dr. S site for doctors to purchase if they are interested in learning and/or treating patients.

 

My son's doctor did the following tests:

 

TSH (Per my notes -- thyroid)

T4 (Affects levels of TSH)

T3Free

VIP

MSH

HLA DR (genetic types)

TGF beta-1 (my dh tests just came back very high - said it is a 'mold indicator'-apparently, can stay in body for many years if body is unable to detox properly)

Edited by JuliaFaith
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Thanks you for your helpful info.

 

Is this muscle testing "ART" testing?

 

I haven't done ERMI test yet, looking for a guy to do this in LOS Angeles, but the results we got so far aren't good.

 

What does ERMI consist of? Is it the one where they punch a small hole in wall? My Dr asked us to do ERMI test.

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Thanks you for your helpful info.

 

Is this muscle testing "ART" testing?

 

I haven't done ERMI test yet, looking for a guy to do this in LOS Angeles, but the results we got so far aren't good.

 

What does ERMI consist of? Is it the one where they punch a small hole in wall? My Dr asked us to do ERMI test.

I believe muscle testing is a form of ART testing.

 

The ERMI test was confusing to me at first, but found out that it is really easy to do yourself. www.mycometrics.com

I finally called them and they sent me a 'dust cloth' since I have wood floors to just dust a few rooms and send it back to them. There is also another test they have where you vacuum carpet, if that is what you have in the rooms you're testing. #732-355-9018

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My question is,

 

How many Dr's do I need to get to the "bottom" of all this?

 

an LLMD

 

and a PANS/DAN Dr too?

 

as well as a Naturopath?

 

Perhaps I should add a Psychiatrist in the mix too.........for me, not my son cause I am gonna need it it seems.

 

For us, we had a PANDAS doc, LLMD, neurologist, Dan! doc and an allergist/immunologist. But, our natural doctor (chiropractor/wellness doctor) has helped possibly as much or more than the LLMD. I can't say our time on abx and other lyme meds was not worth it, it was. So maybe it was the progression of things. We needed the medical lyme meds first and then the naturals is working on the rest. Things overall are going very well. I highly recommend seeing someone who does muscle testing and uses alternative methods in addition to the other docs you have. Supporting the whole body has really helped us. I resisted this a lot due to the cost but it has been worth the $$$.

 

The psychiatrist we saw was not all that helpful but I took my dd and not myself, maybe that was our trouble :P

 

Susan

Edited by Suzan
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My question is,

 

How many Dr's do I need to get to the "bottom" of all this?

 

an LLMD

 

and a PANS/DAN Dr too?

 

as well as a Naturopath?

 

Perhaps I should add a Psychiatrist in the mix too.........for me, not my son cause I am gonna need it it seems.

 

For us, we had a PANDAS doc, LLMD, neurologist, Dan! doc and an allergist/immunologist. But, our natural doctor (chiropractor/wellness doctor) has helped possibly as much or more than the LLMD. I can't say our time on abx and other lyme meds was not worth it, it was. So maybe it was the progression of things. We needed the medical lyme meds first and then the naturals is working on the rest. Things overall are going very well. I highly recommend seeing someone who does muscle testing and uses alternative methods in addition to the other docs you have. Supporting the whole body has really helped us. I resisted this a lot due to the cost but it has been worth the $$$.

 

The psychiatrist we saw was not all that helpful but I took my dd and not myself, maybe that was our trouble :P

 

Susan

 

thanks, thats what I am trying to do now, is get Dr's I like and feel confident about and proceed from there. Naturals/integrative is important to me.

 

Sometimes i think the kids are far more resilient than we are!

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HI Julia,

 

I bought an ERMI test but NOT from mycometrics, is this still the same test, and will the dr. still be able to interpret it?? :o

Do not know if your ERMI test is the same as mycometrics. How much did the test cost? How do you conduct the test itself? You may want to call the lab that you send it to and see if they can answer any of your questions. Maybe you can search for 'reviews' on others that used the same company.

 

My test results were pretty easy to read but I still called the chemist and talked to him. He was very helpful and pointed out the molds that he would be most concerned about. You get a full page, 1/2 indoor molds - 1/2 outdoor molds, with the top 1/2 of indoor molds being the most important ones to look at. There is a # next to each type of mold which gives you an idea of whether it is high or not compared to others on the page.

 

The actual chart, comparing your house to ones across the country, is also pretty simple to read. This is where you get an "ERMI" number.

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I bought it at EMSL it was 165.00 and it says ERMI mold test kit. My first test was an air sample that showed Aspergillus :(

 

http://www.emsl.com/ProductCatalogDetails.aspx?Name=Mold-Test-Kit-with-ERMI-5-Day-TAT-*Non-Refundable*&ProductID=MTK-ERMI-5D

 

I assume it is the same as mycometrics, as I think the Dr. is looking for an ERMI " NUMBER' as you pointed out.

 

I am trying to get a reading to see if we also need to " ditch" our belongings or if we can take them to a new place. We need an ERMI that shows no stachybotrys.

 

I know my son and I have staph infections from mold and we are being treated.

 

Thanks for your help, I am truly running to try and keep up with all that has been revealed to me, and mold is such a serious issue.

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I bought it at EMSL it was 165.00 and it says ERMI mold test kit. My first test was an air sample that showed Aspergillus :(

 

http://www.emsl.com/ProductCatalogDetails.aspx?Name=Mold-Test-Kit-with-ERMI-5-Day-TAT-*Non-Refundable*&ProductID=MTK-ERMI-5D

 

I assume it is the same as mycometrics, as I think the Dr. is looking for an ERMI " NUMBER' as you pointed out.

 

I am trying to get a reading to see if we also need to " ditch" our belongings or if we can take them to a new place. We need an ERMI that shows no stachybotrys.

 

I know my son and I have staph infections from mold and we are being treated.

 

Thanks for your help, I am truly running to try and keep up with all that has been revealed to me, and mold is such a serious issue.

Your kit has 36 species which is the same as ours so it could be the same one (although yours says '5 day' so not sure what the difference between 5-day and 1-day is - maybe quicker turnaround?). On our test the chemist pointed out an Aspergillus # that he said to be concerned about. After researching it found out it is the most toxic and can cause damage to vital organs & cancer! Had no idea that mold could cause these things! Mycometrics is the lab that Dr. S recommends in his book, but that was written 2 years ago. Keep us posted on the results. Interesting: A study was done on mold growth with and without EMF's and the one with the EMF's grew much faster than the one without (cell towers/cordless phones etc.).

 

Why no stachybotrys? This one showed "ND" on our test which I believe means 'not enough to measure'.

 

All of this is overwhelming, I agree, felt the same way when we looked into it. But now with my Dh test's high (TGF beta-1) too we are glad that we know about it and are hoping that it is remedied. We figure we may be healthy in our old age now but broke! ;)

 

Have you done the HLA genetic testing yet? When I cleaned home top-to-bottom I got rid of everything that I could but kept things that could be washed and/or dried for 30 min. or more. Furniture was vacuumed although when I replace it will get leather instead. So it really depends on your susceptability to mold illness.

Edited by JuliaFaith
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I bought it at EMSL it was 165.00 and it says ERMI mold test kit. My first test was an air sample that showed Aspergillus :(

 

http://www.emsl.com/ProductCatalogDetails.aspx?Name=Mold-Test-Kit-with-ERMI-5-Day-TAT-*Non-Refundable*&ProductID=MTK-ERMI-5D

 

I assume it is the same as mycometrics, as I think the Dr. is looking for an ERMI " NUMBER' as you pointed out.

 

I am trying to get a reading to see if we also need to " ditch" our belongings or if we can take them to a new place. We need an ERMI that shows no stachybotrys.

 

I know my son and I have staph infections from mold and we are being treated.

 

Thanks for your help, I am truly running to try and keep up with all that has been revealed to me, and mold is such a serious issue.

Your kit has 36 species which is the same as ours so it could be the same one (although yours says '5 day' so not sure what the difference between 5-day and 1-day is - maybe quicker turnaround?). On our test the chemist pointed out an Aspergillus # that he said to be concerned about. After researching it found out it is the most toxic and can cause damage to vital organs & cancer! Had no idea that mold could cause these things! Mycometrics is the lab that Dr. S recommends in his book, but that was written 2 years ago. Keep us posted on the results. Interesting: A study was done on mold growth with and without EMF's and the one with the EMF's grew much faster than the one without (cell towers/cordless phones etc.).

 

Why no stachybotrys? This one showed "ND" on our test which I believe means 'not enough to measure'.

 

All of this is overwhelming, I agree, felt the same way when we looked into it. But now with my Dh test's high (TGF beta-1) too we are glad that we know about it and are hoping that it is remedied. We figure we may be healthy in our old age now but broke! ;)

 

Have you done the HLA genetic testing yet? When I cleaned home top-to-bottom I got rid of everything that I could but kept things that could be washed and/or dried for 30 min. or more. Furniture was vacuumed although when I replace it will get leather instead. So it really depends on your susceptability to mold illness.

 

No, no genetic testing yet, just switched LLMD's as mine was not experienced and didn't explain anything to me!

 

Is HLA genetic testing the one where you do the test for foods, antibiotics, additives, etc? I think I have a test order for this, haven't filled it yet.

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