T&A Done, MARCONS, & Mold

[JuliaFaith]

DS13 had T&A surgery 3 weeks ago and survived it. Was very traumatic on top of everything else but he has finally turned a corner and is ready to feel better. The tonsils pathology report came back fine (whatever that means - I think they just looked at them and that was it). They were enlarged and severally pitted to indicate multiple infections and adnoids were enflamed. What is surprising is that he has never had any strep throat or sinus infections that we know of. He has had a sore throat during this last year of feeling poorly. Probably a good thing they were removed.

 

While he was asleep, had ENT do a deep nasal culture testing for MARCONS. This came back positive! Was a shock to our doctor too because she said it usually takes a while of testing to get a positive. She believes it may be because he was asleep, they could go deep (yuck!). He is now on a nasal spray called BEG and recommended for treatment by Dr. Shoemaker (see "Mold Warriors"). Also still on Augmentin from before which could also be additional treatment for this as well. In the book "Surviving Mold" by Dr. Shoemaker I believe he says that only people with compromised immune systems mostly get this superbug. Also, there is some additional discussion on super-fungi being created by herbicides/insectides and they somehow get together with bacteria and form a new superbug. That is as close as I can get to describing the process.

 

We did get our DNA ERMI mold testing back as well (thank you Philamom for reminding me). Our count is pretty high which was surprising since we had removed all the mold (we believe) in our house in the last 10 years and thought it was all gone. The testing center recommended that we clean (vacuum, wash, vacuum) the entire house and wait 2-3 months and retest. Oh joy! What fun! He thought that maybe there could be cross-contamination so will try that and see what the results will be.

 

DS has blood word to do along these mold lines as well. They are: C3a, C4a, TGF Beta 1, MSH, VIP, Free T3, & Free T4. Will see what that turns up. These are also recommended by Dr. Shoemaker as well.

 

Anybody else have experiences with any of this? I wonder how many PANDAS/LYME patients have mold problems as well... It is like peeling an onion, one layer at a time, just hope for some good days sometime soon! Many of you can probably relate as well.

[LNN]

You may already know this, but C3a and C4a are thought to be early markers of acute lyme. Here's a paper by Shoemaker.

http://www.survivingmold.com

/docs/Resources/Shoemaker%20Papers/Lyme_acute_C4a_1_08_glovsky.pdf

[JuliaFaith]

You may already know this, but C3a and C4a are thought to be early markers of acute lyme. Here's a paper by Shoemaker.

http://www.survivingmold.com

/docs/Resources/Shoemaker%20Papers/Lyme_acute_C4a_1_08_glovsky.pdf

Thank you - very interesting article.

[justinekno]

My son and I had the mold blood tests done this past week at the suggestion of our LLMD. We are doing the test for our house next week. Did you do the eye test on Dr. S' website?

[MichaelTampa]

Goodness, I guess this illustrates how difficult the mold can be to deal with. We've been working on the mold in our home over the last couple months. More to do. Perhaps nothing was serious, but since we were going to be cleaning things up and replacing others regardless, figured we'd do that work before spending money on testing.

 

Not familiar with MARCONS.

 

Dr. Shoemaker is good. His chronicneurotoxins website has a $15 eye test on a computer to show what affect neurotoxins are having on the body. I have seen my score improve significantly through treatment. It's another measurement to see where you are and where you're headed over time.

 

Regarding the mold, sometimes cleaning the A/C and/or the vents is important. I know sometimes people end up getting things sprayed in there. Our pipes or tubes or whatever they are called are very old with many holes, so we will not be cleaning them, just replacing them. As I said, still working on this, but that's another thing for you to consider if you haven't checked that out. Don't know what the spraying stuff is, just heard it is used sometimes in these situations.

[smartyjones]

Dr. Shoemaker is good. His chronicneurotoxins website has a $15 eye test on a computer to show what affect neurotoxins are having on the body. I have seen my score improve significantly through treatment. It's another measurement to see where you are and where you're headed over time.

 

 

wow -- stunning. thanks michael for posting. i haven't heard of shoemaker. would you mind elaborating on how you are using that website/info in your treatment?

 

i moved to the chesapeake bay area in 1999 -- i remember the pfisteria issues. ds6 and i have infections diagnosed thru a type of ART that we 'shouldn't' have -- one is toxoplasma gondii -- i lived with cats for a less than a year long ago in my whole life. it could be through dirt, etc. i've often wondered if there's a connection having walked/swum in the bay -- could certainly be a source of infection.

 

i'd certainly be interested in hearing more from those who know of shoemaker and his diagnostics and treatment. thanks.

[MichaelTampa]

Dr. Shoemaker is good. His chronicneurotoxins website has a $15 eye test on a computer to show what affect neurotoxins are having on the body. I have seen my score improve significantly through treatment. It's another measurement to see where you are and where you're headed over time.

 

 

wow -- stunning. thanks michael for posting. i haven't heard of shoemaker. would you mind elaborating on how you are using that website/info in your treatment?

 

i moved to the chesapeake bay area in 1999 -- i remember the pfisteria issues. ds6 and i have infections diagnosed thru a type of ART that we 'shouldn't' have -- one is toxoplasma gondii -- i lived with cats for a less than a year long ago in my whole life. it could be through dirt, etc. i've often wondered if there's a connection having walked/swum in the bay -- could certainly be a source of infection.

 

i'd certainly be interested in hearing more from those who know of shoemaker and his diagnostics and treatment. thanks.

 

 

I think his website has a bit of information on it about lyme and neurotoxins, don't know how much of it I've read or how interesting it is, it's kind of been a while since I poked around there.

 

What I have done on the website is simply take the visual/eye test they have. It basically involves having your eyes something like 12 or 20 inches away from a computer screen, cover one eye, and try to see which way lines are pointed in a little box on the screen. It goes from easy to difficult, and his theory is that neurotoxins affect how clearly things can be seen, and he believes this type of eyesight is affected pretty much all the time, making it, in his opinion, a very good way of measuring the effect that neurotoxins are having on you. It is not a "reading/eyesight" test as typically done. For example, if you need glasses/contacts to have 20/20 vision at that distance, then you are supposed to have that on for the test. For me, my results went from bad to now pretty good, although I still have neurological symptoms--what precisely that means for me, I'm not sure.

 

The website may also allow you to purchase recommendations for detoxing. I get the impression it is primarily dosing schedules for cholestyramine. Since I had already been taking that, and energy test my own doses of that daily, I did not pursue it, so can't tell you too much about that, other than it appears to be an option out there. I actually heard about Shoemaker and his website and cholestyramine from my LLMD.

[JuliaFaith]

My son and I had the mold blood tests done this past week at the suggestion of our LLMD. We are doing the test for our house next week. Did you do the eye test on Dr. S' website?

I believe that it says either on the website or in his book that the eye test is recommended for adults only so you may want to double check that. Hope you have some resolution! DS has not taken the eye test. We are doing the blood testing today.

Edited April 25, 2011 by JuliaFaith

[justinekno]

Good point. Our LLMD mentioned it to me at my appt but I didn't think to ask if he was referring to just me or both of us. I'll have to ask although I was going to "experiment" first with myself anyway! Thanks.

 

I believe that it says either on the website or in his book that the eye test is recommended for adults only so you may want to double check that. Hope you have some resolution!

[justinekno]

Our LLMD mentioned having the results from the eye test sent to his office. Apparently you can provide a dr's email address when you take the test.

 

Dr. Shoemaker is good. His chronicneurotoxins website has a $15 eye test on a computer to show what affect neurotoxins are having on the body. I have seen my score improve significantly through treatment. It's another measurement to see where you are and where you're headed over time.

Edited April 25, 2011 by justinekno

[justinekno]

How long did it take to get the ERMI results back? Which company did you go through? I have a couple of different names, not sure which one to go with and if that even makes a difference. I heard that only a few companies are authorized to offer the ERMI testing.

 

We did get our DNA ERMI mold testing back as well (thank you Philamom for reminding me). Our count is pretty high which was surprising since we had removed all the mold (we believe) in our house in the last 10 years and thought it was all gone. The testing center recommended that we clean (vacuum, wash, vacuum) the entire house and wait 2-3 months and retest. Oh joy! What fun! He thought that maybe there could be cross-contamination so will try that and see what the results will be.

 

Edited April 25, 2011 by justinekno

[JuliaFaith]

Good point. Our LLMD mentioned it to me at my appt but I didn't think to ask if he was referring to just me or both of us. I'll have to ask although I was going to "experiment" first with myself anyway! Thanks.

 

I believe that it says either on the website or in his book that the eye test is recommended for adults only so you may want to double check that. Hope you have some resolution!

Just found a quote from the book "Surviving Mold" by Dr. Shoemaker on pg. 12 where he says to a patient "Delaney did'nt have a positive visual contrast sensitivity (VCS) test-it's unusual for the VCS to be positive in a twleve year-old-but she has lots of symptoms and exposure." The VCS is, of course, the eye test. This book has a lot of information but no index so really difficult to find subjects after reading through the book.

[JuliaFaith]

Goodness, I guess this illustrates how difficult the mold can be to deal with. We've been working on the mold in our home over the last couple months. More to do. Perhaps nothing was serious, but since we were going to be cleaning things up and replacing others regardless, figured we'd do that work before spending money on testing.

 

Not familiar with MARCONS.

 

We did all the mold removal first but not sure if all the steps were followed for cross-contamination where the mold can spread to all parts of the house. We are having heating vents cleaned this week while we are cleaning each room. We are also getting rid of the last bit of carpeting in our upstairs in case that is harboring it. With a basement, I wonder if we will ever get the mold count down low enough (lab says 2 or lower - ours tested over 10).

 

The MARCONS are also discussed in Dr. Shoemaker's book. It stands for "multiple antibiotic resistant coag neg staph (MARCONS)."

[JuliaFaith]

How long did it take to get the ERMI results back? Which company did you go through? I have a couple of different names, not sure which one to go with and if that even makes a difference. I heard that only a few companies are authorized to offer the ERMI testing.

 

We did get our DNA ERMI mold testing back as well (thank you Philamom for reminding me). Our count is pretty high which was surprising since we had removed all the mold (we believe) in our house in the last 10 years and thought it was all gone. The testing center recommended that we clean (vacuum, wash, vacuum) the entire house and wait 2-3 months and retest. Oh joy! What fun! He thought that maybe there could be cross-contamination so will try that and see what the results will be.

 

After 2 weeks I called the lab and he was surprised that I had not received the results via email and sent them again the same day. It took me a while to figure out that I can do the test myself and send it into the lab. You can just call the lab (# at www.mycometrics.com) and order the packet. There are two types of test, one for wood flooring, and one for carpeting. Since 1/2 of our test was wood flooring we just did the flooring test. You just take a dusting-type cloth and wipe down areas in your bedroom and main living area only. The vacuum one, you vacuum a set area in those two rooms and send the results into the lab.

[justinekno]

Do you pay for the test when you order the kit or when you send it back?

 

After 2 weeks I called the lab and he was surprised that I had not received the results via email and sent them again the same day. It took me a while to figure out that I can do the test myself and send it into the lab. You can just call the lab (# at www.mycometrics.com) and order the packet. There are two types of test, one for wood flooring, and one for carpeting. Since 1/2 of our test was wood flooring we just did the flooring test. You just take a dusting-type cloth and wipe down areas in your bedroom and main living area only. The vacuum one, you vacuum a set area in those two rooms and send the results into the lab.