Topic: Diagnostic testing in NY - many illegal tests?
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
4-8-11 I am editing this post because of my frustrations with testing in NY. If you live in NY you should be concerned.
1.) Only whole blood and urine can be tested. I called the NYS Dept of Health in Albany to confirm this.
2.) NY state doctors can not order tests for red blood cells, plasma, hair or saliva. There may be more things we are restricted from testing. These are the obstacles I have run into while trying to get my son well.
***I am going to a pro bono lawyer April 13 to try to find out WHY our medical rights are being violated in this state.
"Meridian Valley Laboratory (MVL) does not provide services to any patient or practitioner located in the State of New York."
I asked my son's LLMD and she said her hands are tied in NY... it's like the state does not want to admit that vitamins, minerals and heavy metals can have anything to do with your health!
I called spectra cell labs and they said it is tied up in court and NY does not allow testing.
I am currently scheduled to see a doctor in Massachusetts who can order these tests... but I want to know WHY NY doctors and patients are unable to test!!!
Are there ANY other labs that can test for these vitamins, minerals and heavy metals (in NY)?
Is there a law on the books that I can protest against?
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
posted
I'll look tomorrow. But i KNOW i've been tested for B vitamin levels, magnesium, and calcium.
By more than one doctor, in NY state.
I'm not saying you're wrong ... but maybe there's a detail we're missing??
Posts: 339 | From Outer Space | Registered: Aug 2009
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
The only way to know for sure is to call and ask the lab but my guess is it is because it is probably too expensive in NY for this lab to file and qualify for all the licensing requirements that NY state requires.
I have had testing of this sort done in NY by other labs. The same is true of Diagnos-Tech Lab. If you live in NY state they cannot process your test and it is because they have not applied to be qualified or certified, if you will, to do business in the state of NY. My doctor told me it is because it is too expensive for many companies to do so in NY state.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
The hair analysis lab (Meridian) had a notice right on their website saying no testing in NY state.
When I called Spectra Cell Labs, they said they were not allowed to do testing in NY and it was tied up in the courts so they couldn't talk about it. This looks like a blood test, so I don't understand that.
My head is spinning. Way too much information and it seems like something that should be as simple as a blood test is complicated by restrictive laws.
I am close to Vermont and if I could find a doctor that would help us in that state there are no restrictions on testing there.
I have an appointment in MA - but not til Jan. 19th I was hoping to find a way to do this testing sooner.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
BTW, Dr. K says the most accurate way to get a picture of what is going on with heavy metals and trace metals is with HAIR testing. This is one of the main reasons that I continue to search for a non-restrictive testing site.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
So today I talked to a ND / MD office in Vermont that advertises on their website that they do heavy metal chelation and specialize in Lyme Disease.
They said they can't do the hair analysis on my son because he is a New York State resident!
This I did not know.
Now we have to move to get a hair test done???!!!
I am sick of this. I just want some help from a doctor with heavy metal chelation / HPU treatment.
Any ideas are welcome.
Anyone know whether a DMSA induced urine test will give us any useful information for moving forward with HPU treatment?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
posted
DMSA may or may not show heavy metals in your son's urine.
If it does show heavy metals then you can be assume that it's effecting his zinc levels which points to KPU/HPU.
I had the dmsa provocation test 2x. Once at the beginning of lyme treatment and lead, mercury and aluminum were elevated.
At the end of lyme treatment and almost 2yrs. of metal chelation all my levels were down but lead was still elevated. This does not mean my mercury levels are good but could mean my body is still holding on to it. Hope this makes sense.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Is there any point to doing the DMSA test?
This doc won't take my insurance and if all they are going to do is tell me he has mercury and lead... I already know that.
I just want a doctor to monitor him and guide me to do the right things for him.
I guess I need to do more reading on what tests will monitor him during this whole process.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I finally got a solution to this issue...
Doctor's Data is the lab that I wanted to get the hair elements test from...
New York State health law prohibits the testing of specimens collected in or mailed from New York and prohibits the transmission of data from a laboratory to NY physicians or residents, unless this laboratory is licensed under the New York State Public Health Law.
Annelet - I have no idea how your LLMD gets the test done from NY... my LLMD and I ran into brick wall after brick wall. I am sending you a PM.
I have been wasting time at appointments with Vermont doctors looking for a doctor to order the test. I found out that most doctors don't think heavy metals can contribute to chronic lyme disease. I even had one doctor tell me you can't get heavy metal poisoning unless you work in a battery factory.
HERE'S THE SOLUTION (thanks to a post at Autism-Mercury yahoo group):
Direct Labs states on their website that "State law prohibits direct access testing in New York, New Jersey and Rhode Island." So I thought I was out of luck here too... according to a post I read:
From Direct Labs point of view, none of this applies to sending a test kit to a New York address, which they do every day. I called them 985-231-0879 and they are sending me a test kit.
DirectLabs actually puts the name of a Louisiana MD on the test requisition, and the return address for the kit is in Louisiana. DDI transmits the results directly to DirectLabs in Louisiana.
As far as I know, nothing in NYS law prohibits a doctor outside of NYS from transmitting test results to their patient in NYS. So this is how DirectLabs mails the test result to the patient in NYS.
Another tidbit I got off that forum (with no citation): New York made hair tests illegal when someone used them to figure out some of the public schools were poisoning all the kids with lead. It was cheaper to make hair tests illegal than to remediate the schools.
I will be continuing to investigate this law. It seems ridiculous to limit testing like this. I want to know why and write senators & representatives to lift these laws that don't allow us to test for vitamin & mineral deficiencies!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
posted
I do not understand. I guess I can understand that NY has restrictive certification, but why should you not be allowed to get tests from other states.
I would imagine you should have a lot of hair pulled out for the test if you are ever allowed to get take it.
It would be interesting to see what your congressperson's office has to say.
The california nurses union is a great resource for the political aspects of health care here, but things may be different there.
Posts: 357 | From California | Registered: Jun 2010
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Please help me get to the bottom of the issue with NYS testing. See the edited 1st post.
I am very frustrated with this.
Another test that we cannot do in NY: Mycoplasma pneumoniae & Chlamydia pneumoniae multiplex panel by Clongen Labs.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
posted
Have you spoken to any of the support groups for patients that tend to have atypical testing done on them because mainstream medicine has nothing to offer? I am thinking of autism specifically. They have to have found solutions to this problem in your state. The getaround is what you are looking for, not the specific tests.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Many times I've had to send out tests from a location in Jersey
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
| IP: Logged |
posted
It is my understanding that New York requires that all lab tests be certified by that state. As far as I know all other states only require that the actual lab be certified.
So if a lab offers 50 different tests then each test must individually be certified by the state of New York. Many labs do not even bother going thru the process because of the time and expense involved.
This is what I was told by some docs when hubby had some medical appointments in New York.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I have a half hour free consultation with a lawyer specializing in health on April 28th.
Hopefully I get some answers.
In the meantime, I am off to post in some NY support forums for Lyme and Autism.
BackinStOlaf - can you send me any info by PM about where in NJ?
Lou - you are right. The getaround is what I am looking for. I found a way to get the hair test done... not the blood tests, stool samples or saliva.
I have to find a doctor who is not in NY who will order testing for a child and an adult and does not have a waiting list a mile long or high office fees. (PM me if you know of a Lyme friendly, open minded MD that fits this description)
Bea - I have talked to one of the doctors at the NYS Dept. of Health in Albany and he says we can only test whole blood and urine. So what you say is true... but it goes deeper. They will not approve tests that are not on whole blood or urine.
I have called several labs directly. NY is the ONLY state with these restrictions.
Still would like more feedback and advise!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Heather- yes, go with Direct Labs, I think they do Doctors' Data testing. If you're close enough to New Jersey or VT, go to a collection center in one of those states if they wo'nt do it at a NY State collection center (the way Direct Labs works for most tests is that you go to a local Labcorp office for things like blood draws- of course the way the Doctors Data toxic metals test works, you get a big container to pee in, and a mailer to send a sample to the lab after the urine collection is done, so you might not need to even see a local Labcorp for collection- but- there's an injection of DMPS or another chelating agent involved, and I don't know how they handle that through Direct Labs.).
-------------------- Symptom Free!!! Thank you all!!!!
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
You can't even do the Neuro Science test that uses urine to check your neuro transmitter levels in NY any more due to changes in the law.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Maybe this is NY's way of telling me I should move.
There are far too many obstacles to getting well imposed by an over-controlling state government.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 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/