

justinekno
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Everything posted by justinekno
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A good friend gave me this analogy recently when I was trying to decide whether to send my son on his school outdoor education trip. Walking in a parking lot, there is always a risk of getting hit by a car but walking across a busy street dramatically increases that chance. So yes, my son can get bit by a tick just playing baseball or hanging in the backyard but putting him outside in a wooded area for two days dramatically increases his risk. Also, I know the tick checks won't be done like we do at home (I wouldn't expect a 12 year old boy to allow his teacher to do such a thorough check!). My son is enjoying his first year of having a clear head and actually being able to retain school lessons, so he's okay not going. It helps that another boy is staying home due to outdoor allergies. He and I will do something special those two days. He will be fine and I won't have to lose more sleep wondering if he got bitten and waiting for the dreaded symptoms.
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When we did the test, our LLMD checked off both. The total for the test was $70. I did see higher numbers for HPL although our dr seemed only concerned about the KPU number.
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NEW Pyroluria Community forum
justinekno replied to butterflymom's topic in PANS / PANDAS (Lyme included)
Do you have the link? -
ACTH test results back -- son's is high
justinekno replied to Christianmom's topic in PANS / PANDAS (Lyme included)
That's how I understood it too. -
Awesome news. Sleep issues can be so exhausting and frustrating for all involved. Sounds like positive steps.
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ACTH test results back -- son's is high
justinekno replied to Christianmom's topic in PANS / PANDAS (Lyme included)
I don't have my son's results in front of me but I don't think we tested ACTH. We did all of the other Shoemaker tests which had results suggestive of mold exposure. Is your dr conferring with Dr. S on the mold piece of your son's problem? -
We actually did vacuum with a HEPA filter but have not tried the fan approach. A piece of our puzzle is that the family room is an addition that was built on wood piers instead of a foundation. We think the problem lies with the wood underneath. The only way to fix it is to knock the room down and build on a foundation. Urgh.
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I spoke with the dr at MycoMetrics and he was pretty helpful although somewhat hard to understand. He went into the report in detail and explained that some of the molds that came up are slow growing molds (stachybotrys) and therefore suggest chronic water exposure or humidity. He recommended re-testing in 6 months which would give us an idea if our recent remediation was helpful. He also asked if we had a pet because some of the fungi can be brought in on their paws since they don't wear shoes that can be removed. I think we have a pretty good idea of the source so I can't say that we are going to keep re-testing at this point.
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We have Airwise purifiers. Our LLMD has them in his office. You change the bulb once a year but there is no filter. They're pricey but quiet After researching it, and considering price, we went with 2 Winix 5500 covers 350 sq. feet, pre carbon filter, washable true hepa filter captures 99.97% no harmful ozone, quiet. I did not want an ionic.
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No, not fun at all. Although the good news is that my son's labs for mold (Dr. S.) are improving so we're doing somethings right . We actually have an air purifier on every floor so the family room has one already. Hate to think what the ERMI was before we did remediation and bought the purifiers. I guess I need to work on a new plan. How about you?
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If I'm reading the report correctly, our family room came back as a 7.81 and our upstairs hallway (outside of bathroom) is a 4. Our family room is an addition built on piers and is located indirectly above the basement which we remediated recently due to air testing. Not sure what to do next
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Okay, I have a silly question. Where is the score on this report? Is it at the bottom where is says ERMI? The graph at the top of the page has thrown me off. Not sure if it's related to our score or not. There's no guide or key to this report. Urgh.
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Thanks for posting this. We are starting to go down this path - have lab orders in my purse for testing MTHFR, Methylmalonic Acid, and B12/Folate Panel. I was talking to our LLMD on the phone last week and I pulled out some testing we did through Great Plain Labs in 2009 and some of the results hinted at possible methylation issues so we are going to go the cheaper and insurance covered route of doing the bloodwork before rushing to do another urine test through Great Plains (we just did the KPU and ERMI tests this week so I have no more money left for awhile!). Also, agree with LLM, Yasko's DVD is very informative. My husband and I watched it on our "date night" this past weekend
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I love this analogy. Sums it up perfectly!
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We had the same experience in the spring and were told by Dr. J. and our LLMD that it was due to bone growth (all of the other liver related numbers were normal). My ds(11) has definitely grown alot in the past few months.
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We sent our ERMI test off last Monday. We should receive our results this week. We have air purifiers on each level of our house and have done extensive remediation in our basement. Hopefully we have done enough or I will be feeling just like you
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C3a/C4a test back from Jewish Health
justinekno replied to Christianmom's topic in PANS / PANDAS (Lyme included)
How long did it take to get your results back? We are waiting for our results which were drawn 4 weeks ago through Labcorp. My son's first tests were through Jewish Health so it is somewhat frustrating that these will not be a clear comparison since it's going to be a different lab. I think I saw on our last labs that going forward, Labcorp would be doing the tests at their own lab? -
For those that did the ERMI Test
justinekno replied to justinekno's topic in PANS / PANDAS (Lyme included)
Thanks. You too. -
For those that did the ERMI Test
justinekno replied to justinekno's topic in PANS / PANDAS (Lyme included)
That's great that you are set to go. Did they tell you not to vacuum for a week before doing the test? You didn't use the site you posted earlier - Mycometrics? Ugh, this place looks alot cheaper. I wonder how they are so much cheaper than mycometrics. -
I had a similar experience with my dishwasher last week. It was smelling after I had run it so I took a paper towel and sprayed vinegar on it and wiped the bottom of the dishwasher inside by the door. A whole bunch of gooey, slimey black stuff came off. I thought I was going to gag. My dishwasher now smells good again after running a load. Ickk....
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The problem with the tablets is that they don't address the inside of the rubber rim that gets icky. I have a front loader (about 2 years old) and leaving the door open hasn't helped either. I love my front loader because there is no agitator to ruin clothes and I can get more clothes in my front loader. The downside is the rubber rim though.
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For those that did the ERMI Test
justinekno replied to justinekno's topic in PANS / PANDAS (Lyme included)
Mine was $300 total but the guy in the phone told me the two samples would be combined unless I paid a separate amount for each sample. So I'm interpreting that to mean $600 for two separate rooms. -
For those that did the ERMI Test
justinekno replied to justinekno's topic in PANS / PANDAS (Lyme included)
I didn't realize that when you buy the standard ERMI, even though it comes with 2 samples, the two samples are put together unless you pay for each to be done separately. How did anyone who did this test handle that? Did you combine or pay for separate tests? I'm assuming the benefits of doing them separately would be you would have a better idea of where your issues are but yikes, that's $300 times two -
For those that did the ERMI Test
justinekno replied to justinekno's topic in PANS / PANDAS (Lyme included)
I hear you! Have you seen any improvement with the Cholestyramine? Did you do the blood panel of tests (c3.& c4, et al)?