Topic: What are the newest/best must have labs for chronic Lyme?
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I wish there was a list of must have labs. I have complete faith in my new ILADS doctor, but my insurance may be changing in November, and I would like to make sure that I get in testing that will help us get well while it is covered. Doc is always open to suggestions and discussion. For example, I have been hearing about the VIP test, MTHFR and HLA testing. We are all 3 chronic Lyme and have 3 years of treatment completed.
Any mold lab information would be appreciated, also.
Thanks for any lab info you can share!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
posted
I just did the Real Time Mold mycotoxin test which is supposed to be the best one out there.
It's a urine collection. Tests for mold mycotoxins in your body. Very expensive but accurate, according to my LLND
Posts: 486 | From USA | Registered: Jan 2012
| IP: Logged |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Birdie- how much is the testing? Do you know which lab it is through? I wonder if insurance would cover it.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
posted
It is from Real Time Labs and around $600.00. My insurance didn't cover it but others may.
It was a great tool for my LLND knowing if mold was inside, affecting my body.
Posts: 486 | From USA | Registered: Jan 2012
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I had the HLA test done with our doc, but it really didn't tell much. I don't have the really bad gene, but I do have gene that makes me susceptible for chronic lyme. I wish I didn't know that.
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I still don't really know what you are supposed to do if the mycotoxins test is positive? A friend of mine spent all this money to get it and now doc doesn't know what to do with the info
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
I was suppose to get the same mold test too but I couldn't find anything on how to eliminate it if I had it. Not going to get it until there is a treatment available. Would be just one more thing I have to live with.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
MTHFR only - Can be tested through any regular lab (Quest, etc.), and likely to be covered by insurance.
23andme.com does check some methylation genes also, but not the full list.
DetoxiGenomic testing is done through Genova Diagnostics, and it shows liver detox Phase I & II genetic impairments. Methylation is part of this, but they don't check any of the SNP's for Methylation except COMT.
NutrEval - (also from Genova Diagnostics) looks at nutrition, metals, fatty acids, amino acids, etc. - can be used in conjunction with methylation testing to see what the biochemical consequences are when methylation is impaired.
The mold gene tests I am not familiar with...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Thanks everyone!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic