This is rather discouraging - legitimate labs and tests

[roxie60]

I have been feeling really bad the last 4.5 days. At first I thought it was becuase I over did it Wed running around to Drs. I have felt poorly for so long I have gone on disability and I am desparately trying to determine what is wrong. I have taken an IgG test (found some food allergies/sensitivities eggs, dairy, grains, etc). Colonoscopy found lymphocytic colitus. So I'm still searching for answers. I have taken the Health Diagnostics Methylation Pathways test (waiting on results). I have been on generic Mentanx since first week in April but no real improvement in energy, brain function, etc. Last week Dr suggested another test by NeuroScience (performed by Parmasan Labs?) called NeuroAdrenal + Meletonin saliva and urine test. I know many of us are desparate to find answers especially when we feel realy awfu. But I came accross a link that puts down a number of labs as quackery so I wanted to know do you think we and some of our Drs are being taken??

http://www.sciencebasedmedicine.org/index.php/bogus-diagnostic-tests/

 

[Esther12]

Hi Roxie. I think that it is a good idea to try to research the value of any tests that are being taken, especially if treatments are being suggested because of their results.

There is a lot of quackery in medicine, and especially around CFS I'm afraid. Some people just aren't very good at knowing how medicine should be done, and some people are just willing to make money out of desperate patients.

I know that it can feel discouraging to have something you thought might be helpful disappear from under you, but it's better to know now rather than later. A lot of people have spent a lot of time and trouble on difficult to follow diets, or risky drugs, only to eventually give up when it becomes clear that they are not effective. At least your work should have saved you some of that trouble.

If you have had a hard time and a disappointment, then try to take some time to do something nice for yourself. Good luck with everything in the future.

 

[Valentijn]

I had neurotransmitters (urine) and cortisol tested by Neuroscience about a year ago. When getting tested again a month or two ago, a lab here in the Netherlands gave very similar results. Also, the blood platelet catecholamine results I got from the Dutch lab gave similar results compared to the urine catecholamine results from neuroscience.

I'm not sure why that site has its panties in a twist about salivary cortisol. It looks like there's reputable papers published using it, and salivary cortisol has the significant advantage of allowing for easy testing at multiple points throughout the day, including times of day when labs are closed and a blood sample can't be taken. If there's any doubts, positive findings could be followed up with blood testing to confirm a diagnosis.

The only thing I agree about is the inappropriateness of the same company running the tests and selling the supplements. The supplements worked wonderfully for me at first - several weeks of almost complete remission before symptoms slowly returned to baseline. And much of my current supplement regimen incorporates the same ingredients they use, because they do make a significant difference. But Neuroscience's failure to list amounts of each ingredient is unforgivable, and I use other sources now so that I know the dosages and can modify them.

On the other hand, it's a lot more convenient to get 7 or 8 ingredients in the same pill, instead of taking 7 pills. It might be worth looking at the cost of the ingredients versus the cost of their proprietary blend, to see if the mark-up is worth more than the convenience. And it probably is worthwhile to try their blend for a couple weeks to see if does help a lot, then hunt down ingredients on your own. If it weren't for Neuroscience, I wouldn't have known what a huge difference some N-actelycysteine could make, and I'd still be sleeping horribly

To summarize, my experience is that Neuroscience is offering useful and accurate enough testing, and I think their guidelines for what to test and how to treat were also spot-on in my case. I just dislike that they use their tests as a platform to market their own supplements, no matter how great they work. Even if they aren't abusing that system now, they easily could be, and there's no easy way for customers to find out without paying for it and trying it themselves.

 

[Valentijn]

Oh, the author explains in the comments section that salivary cortisol is the exception to salivary hormones being inaccurate. Someone else pointed out that it's a pretty well-researched and accepted test.

 

[roxie60]

thx. sushi also felt neuroscience was reputable. started taking dribose today. unfortunately had to get cortizol shot in left elbow so the pain is sapping my energy.

 

[adreno]

I think the Science Based Medicine Blog is very similar to quackwatch, in the sense of being biased towards traditional drug based medicine. It's easy to trust allopathic medicine as long as it works for you, but once the system stops working, that trust falters.

The lab tests mentioned in the article, and those that many here use, are based on what is called functional medicine. This is presently considered alternative by the mainstream. Functional medicine covers new ground that is not very well researched at the moment, but I believe it's principles are based on science (biology).

I do agree that not all tests available are of equal value, though, so selecting the right tests is important.

 

[roxie60]

thx for all the well expressed replies

 

[xchocoholic]

My doctor uses these functional medical tests and thusfar medicare has paid for all of these.
I would have to assume if medicare is paying for these, then they consider them legit.
My understanding is that the saliva test picks up on hormone problems before the serum tests do.

Tbh, I would also have to question if the author of this site is affiliated with a drug company. Or maybe
he's just an ass .. Lol.. Tc .. X

 

[roxie60]

wish my ins would pay, makes me wonder if Madicare accepts the tets why dont private ins companies??

 

[xchocoholic]

I'm not sure what's up with that. Is there a financial connection between drug companies and insurance
companies ?

 

[Sushi]

One point, Blue Cross owns Quest!

Sushi

 

[xchocoholic]

The author of this article is associated with naturowatch which is connected to quackwatch.
The website, sciencebasedmedicine, had some good cfs articles ...

The link to this person's connection is available by clicking on his/her name in the article listed above.

 

[xchocoholic]

One point, Blue Cross owns Quest!

Sushi

That would explain why they think these labs are bogus. $$$$$$$

Funny story. I was handing out nutrient testing information fliers at a local hospital to members of my celiac support
group when someone in our group who worked at the hospital where the meetings are held, a different hospital, stopped me.
She said I couldn't hand these out because it was a conflict of interest.

When I pointed out that her hospital didn't offer this testing she still didn't back down.

Then I pointed out that celiac disease causes nutritional deficiencies, she still didn't back down.
I just got an earful on how lucky we were to have a meeting place. And how much this empty
room cost the hospital on a sunday afternoon.

How sad is that ?

 

[Little Bluestem]

This sounds like an allopath with a severe case of “we are right and everyone else is wrong” syndrome. This disorder is too common in the health care professions. I have read chiropractors state that you will never need to see an MD if you get regular chiropractic care. When I have suggested that I ask my physician for a prescription to my clinical dietician, she has had some reason why I shouldn’t. Early on, she suggested that I stop the one prescription that I am taking in favor of her supplements (with zero success). (My physician referred me to her.)

I avoid the BodyBalance direct to consumer test kits. A nearby health food store was owned by a clinical dietitian and naturopath. I bought a BodyBalance kit, planning to discuss the results with her. When I opened the kit I found that it asked for a LOT of personal health information. It said that the forms would be reviewed by a “qualified healthcare professional” (whatever that means) who would decided whether they would run the test. If the test was run, the qualified healthcare professional would review the results and decide whether they were going to send them to me. If they decided not to run the test or send me the results, they would refund my money. They would still have my health information for which I think there is a market. I figured that if the forms or test results indicated that the person had a serious health issue, they would not do/return the test. I was not comfortable with the situation and did not send in the kit. I chalked up the cost to education.

Ideally, I think that tests should be ordered through a healthcare profession who will be able to intelligently discuss the results. I am aware that is not always possible. There are other labs used by people on this board that I think would be better choices.