Who has done the ERMI testing? What lab did you use and how long did it take? I am about to call the lab referenced in Dr S's book tomorrow to get this rolling, hopefully to rule out mold issues in my home.
Also wondering if any of you have either seen Dr S personally and been run through the battery of tests he recommends or had your LLMD do these? And what they revealed? Anyone just come up with the haplotypes for "post-lyme" or did most come up moldy too?
I am interested in pursuing this line of testing and possible treatment. I have a very open LLMD who has already had me take the VCS test and started me on Actos and CSM as I failed the test miserably.
It's day 6 on the CSM and I feel pretty rough even though I've maintained the Actos as well. Anyone else on this combo have a "herx" around ths time? If so wondering how long it lasted and if you saw the "soft landing" he talks about on the other side at all?
MARCoNS anyone? Anyone been tested for this, come up positive, treat while still on CSM and do better? Very curious.
Interesting to me that all 6 of us in this family are still unwell after 2 years of Lyme and co treatment from a very forward thinking and aggressively treating LLMD. I wonder about genetics and think Dr S may really be on to some things that can help us get well. Just hoping our home isn't making us sick, not sure how we would afford to remediate or move after all the $$ we've spent on treatment this far, it's drained most every penny!
Posted by momlyme (Member # 27775) on :
I did the ERMI through mycometrics to "rule out" mold in our home.
I found out this was a major piece of the puzzle.
I am on CSM and so is my son. No actos. No herxing either.
I do know CSM won't work if you have not removed yourself from exposure.
Try moving out for a week or two. Take nothong
Posted by Aimee (Member # 20946) on :
I ordered the test kit from mycometrics today. I am cautiously optomistic that we don't have a mold problem in our home as I am getting improved VCS results on the CSM after only one week and I haven't moved out yet! But we'll see. I know he lists the ERMI testing as step one seeing as you won't get will with continued exposure.
My LLND started me on the CSM thinking the Lyme biotoxins were my issue, and maybe they are, but I want to rule out mold too.
Still curious about others who have had the full battery of tests he recommends and what they showed as well as any specifically who were positive for MARCoNS.
MomLyme - did you remediate the mold in your house or move and take nothing? Hoping it doesn't come down to that but I'll cross that bridge when and if I come to it I suppose.
Posted by momlyme (Member # 27775) on :
We moved out on April 16th.
The only things we took with were some clothes which we washed with ammonia. Supplements which we we also washed the bottles with ammonia.
We are emptying the house this week... most to the dumpster... what we want to keep, we are putting into storage.
Then we are ripping into the bathroom that seems to be the source. I can't help. I get too sick. My husband and some of his friends will be in hazmat suits with N95 masks.
Posted by Lymetoo (Member # 743) on :
I hated CSM bigtime. Felt good for 10 days then it was all downhill.
Posted by momlyme (Member # 27775) on :
Lymetoo - did you have the regular CSM or the "light" without sugar?
I started with the kind with sugar, then had my LLMD switch me to the Questran Light.