Prometheus Serology Predictive Value

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MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 8/19/2010 2:52 PM (GMT -7)   
Has anyone had any experience with only having this test come back positive (IBD Serology 7)?  As in, no other test showed anything at the time, only to discover you had Crohns a few years down the road?  I know it's a relatively newer test, but I was just curious.
 
Thanks! 
 
**************
MayOK
Regular lower GI issues since 2007
Currently Un-Dxed
IBD Serology Test Positive for Crohns
Normal C-Scope & Capsule
EGD findings:  Esophagitis and Gastritis
"Proceeding as if it's IBS..."
Currently on 2-week course of Xifaxan
Align Probiotics Daily

DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 8/19/2010 3:43 PM (GMT -7)   
I haad the opposite. When my promethus 7 test it came back negative my GI said "This is only correct 60% of the time so lets keep testing". I was confirmed latter with a pillcam. Seems like a waste of time and money if the GI does not even trust it. My GI has apologized to me more than once for wasting my money on that test.

David
Was on Kapidex, and Pentasa, multi Vit, Vit D. Started on Predisone and my legs started paining with loss of control. Doc stopped all meds until I can figure out what is happening with my legs. Off meds for 4 weeks. Back on 20 MGs of Pred. Starting to see Neurologist for legs as GI does not really know what is happening.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/19/2010 3:55 PM (GMT -7)   
MayOk, I had a surgery consult today and the surgeon told me that he felt my positive ASCA was from my other auto-immune issues and not predictive of crohn's disease. So, it can be a strange test. The GI's don't like them from what I've heard.

I have been diagnosed with colitis but not UC or crohn's.

I have a positive ANA and skin scleroderma. Good luck on your quest to find out what's wrong.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 8/19/2010 5:06 PM (GMT -7)   
Interesting. Yeah, my GI keeps saying, "you may develop crohns down the line." Didn't know how true that was, like if the test had any kind of predictive value. He said some people dont like to use that test, but that and a colonoscopy were apparently his first line of dxing someone.
I know a lot of confirmed crohnies have gotten false negatives on the test, but usually false positives are a different story on most tests.
There was only one assay that was actually out, the anti-cbir1. But i have read that it's the overall pattern that is important, not necessarily actual assay values.
 
**************
MayOK
Regular lower GI issues since 2007
Currently Un-Dxed
IBD Serology Test Positive for Crohns
Normal C-Scope & Capsule
EGD findings:  Esophagitis and Gastritis
"Proceeding as if it's IBS..."
Currently on 2-week course of Xifaxan
Align Probiotics Daily

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/20/2010 9:12 AM (GMT -7)   
All of my tests had come back negative and, after 8 years, my GI told me to move on because he couldn't figure out what was wrong.  Next GI did this test, which said UC, and then the capsule endoscopy, which showed Crohn's.  So, this was the first test to indicate that I had IBD. 

Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 8/20/2010 11:40 AM (GMT -7)   
I know of two other people on another forum who had it come back as their first positive anything. Of course, I guess if anyone were truly a false positive, they wouldn't be hanging around in these forums, LOL. So my informal survey results may be skewed.

So Zena, your GI told you to find another doc? Is that what you meant by "move on"? He didn't tell you that you just had IBS? Amazing. I just don't know if this is one of those situations where maybe (if I do have Crohn's) I just have to wait around for the disease to make itself manifest. One guy I know of had his Serology come back positive and then it was 4 years later before his c-scope showed anything. And another doc thought the Prometheus results were wrong and ordered it again and it was positive again. He went to like 8 different docs and had 8 c-scopes among other tests. Plus my doc isn't ordering anymore tests, so I don't know whether to go look for another. Or at least have someone review the stuff to see if there's something blatantly obvious that is being missed. I guess if I do that I have to have another referral from my GP? I like my GI but I don't want to have some disease knawing at me untreated if it can be helped. Ack. Decisions.
 
**************
MayOK
Regular lower GI issues since 2007
Currently Un-Dxed
IBD Serology Test Positive for Crohns
Normal C-Scope & Capsule
EGD findings:  Esophagitis and Gastritis
"Proceeding as if it's IBS..."
Currently on 2-week course of Xifaxan
Align Probiotics Daily

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/20/2010 11:54 AM (GMT -7)   

MayOk, he did definitely ask me several times if I thought it was all in my head, since he couldn't find anything.  IBS was mentioned as well.  He did every test he knew to do, twice.  Finally, he told me it may be better to have another set of eyes look at things.  I thought I was just getting a second opinion and went to another GI.  For my first few visits with the new GI, I would call the old one to consult and they finally told me to stop consulting with him and to just go with my new GI.  That new GI turned out to be a horrible doctor, but he did at least find something before I switched again.  I don't remember getting another referral...I don't think I had to either for insurance purposes (since I had already been referred to a GI) or for the doctor's office purposes.  It will depend on your insurance and the individual doctor. 

If you think something is wrong and they are not willing to do more tests, etc., then try another doctor.  Most of us go through a few before finding the right one. 


Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/20/2010 12:00 PM (GMT -7)   
I guess these things are why they call it "practicing" medicine!!!
 
May, I had a clean scope 5 years ago after a CT scan said I had inflammation. Since they it always seems the CT scans show more inflammation than the scopes even though I've had inflammation show up on my scope in Jan 09. I am not a lot better either.
 
The surgeon at Mayo yesterday said he thought my positive ASCA was b/c of my other auto immune problems and that I have no evidence of UC or crohn's. I guess I can buy that about the ASCA test. I know they are positive in other auto immune disorders. But, gee, maybe all this crap is related????? It's funny that it all happened at one time. I also have skin scleroderma, btw.
 
He also told me he wasn't sure surgery could get rid of all my GI symptoms and that surgery would be totally up to me and elective.   I was flabergasted that he worded it like that. What kind of doctor says that kind of junk? He hadn't even talked to my GI to make sure they have exhausted all treatments. That I can understand but he was very non-commital and beat around the bush pretty bad with me, which I don't appreciate. I'd rather someone just be up front and be honest with me, person to person.
 
It sounds like a few of us are pretty frustrated right now and with good reason.
 
MayOk, what are your symptoms in the lower GI? I was told I had IBS 20 years ago and while I think I have it, there is other stuff going on now. A lot of people get told they have IBS only for it to turn into IBD years later. I just think it is not a precise science.
 
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/20/2010 12:16 PM (GMT -7)   

jeanneac, yes, they are definitely related.  When they first sent me to a rheumy about 8 years ago, they couldn't figure out if the inflammation showing up was RA, was from my thyroid disease or from something else.  All of those are auto-immune and auto-immune diseases run in my family...guess I couldn't help but get all kinds of stuff. 

I'm amazed that a Mayo surgeon would tell you that he doesn't think you have IBD but that he'll do surgery if you want, especially without consulting with your GI.  Aren't they supposed to be the top docs, but they are willing to do surgery they think is unnecessary and won't help? 


Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/20/2010 2:35 PM (GMT -7)   
Yea, Zena, it's a load of crap for sure, isn't it??? I wonder where these doctors get their training on how to talk to patients????
I am pretty angry about all of this and don't know what to do. I am sure I could consult another surgeon and bring all my scans etc..... to get an opinion. Getting another GI would involve another colonoscopy and I am tired of all these darn tests with no friggin results or relief. So, I am gonna think about getting another surgery consult and also wait to hear from my GI doctor.

It's sad that so many of us have stories like these about bad doctors.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 8/20/2010 3:33 PM (GMT -7)   
Wow, I thought Mayo was top notch for stuff like this. Must be like any place else, depends on what doc you get.

So scopes often do not show what CT scans show? I heard someone on another forum said she got dxed through an MRI and her scopes were clean too! What the heck? I thought c-scopes were "gold standard" or whatever.

I had an abdominal CT scan to check out what an ultrasound had determined was a hemangioma on my liver. It said something like "no specific intestinal abnormalities." I've heard people talk about CT enterography but I didn't know if all abdominal CT scans are created equal when it comes to looking for IBD. I had to drink that nasty Barium. It tore me up, though for the rest of that day. Maybe I should request an MRI. It's not radiation, right? I just feel weird "telling" my doc what to do. I don't see my GI again until October to let him know how the Xifaxan helped. I'm not sure it is. I keep having issues off and on.

My issues are frequent D with sporadic horrific bouts of cramping. One of said bouts made me pass out, and I finally went to the doc b/c I was among friends when it happened so they would have killed me if I didn't. But it's been going on for years. Really got going when I was pregnant with #2. And sometimes I vomit at the same time (fun!) but that hasn't happened recently that I can remember.

I also have what I think is terribly painful ovulation. I'd been having these terrible stomach aches that I finally figured out were almost exactly in the middle of my cycle, so I'm kindof assuming that is what it is. But the pain, while all over my lower abdomen, is most severe in the LRQ. It doesn't switch sides like I'd assume ovulation would do. Endometriosis? I dunno. But I had 2 c-sections so maybe there are adhesions or something. My periods are no sweat tho, and I hear they're awful with endo. ???

Jeannac: ARe you saying it was your ASCA assay that was out? Or are you talking about a different blood test?
 
**************
MayOK
Regular lower GI issues since 2007
Currently Un-Dxed
IBD Serology Test Positive for Crohns
Normal C-Scope & Capsule
EGD findings:  Esophagitis and Gastritis
"Proceeding as if it's IBS..."
Currently on 2-week course of Xifaxan
Align Probiotics Daily

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/23/2010 6:43 AM (GMT -7)   
MayOk, you mentioned endometriosis...not everyone has bad periods with that.  A lot of people do, but I actually had no period and they ended up finding endo.  Endo was causing some of my abdominal pain and it helped to have surgery for that.  Now I know what's really from the Crohn's...it was so hard to know at first what was from Crohn's and what was from endo. 

Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/23/2010 7:09 AM (GMT -7)   
I think the pill cam is supposed to be the best test for finding problems in the small intestines. Colonoscopy is supposed to be the gold standard for finding problems in the large intestines. Have they given you anything for the cramps and IBS? Xifaxan is an antibiotic.

Until you mentioned it, I'd never heard of anyone having an MRI for the large or small intestines. I think since they move a lot, that's why they don't use MRI's but I could be wrong there. It's like pulling teeth to get a doctor to order an MRI for anything.

Yes, my ASCA was positive, MayOK. Last week, the surgeon that I had a consult with thinks it is a false positive b/c I have other auto immune issues. Just a "speculation" though, he doesn't know that for sure.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 8/23/2010 9:42 AM (GMT -7)   
Yeah, I know at least two people who got diagnosed through MRI. On one girl's it saw strictures in her small bowel. I know the scopes would be top notch for ulcers and inflammation but didn't know about other things like fistulas and strictures.

I wonder, too, why they don't use MRI more often. It would mean less radiation for the patient. But I think the test takes longer? Like several hours or something. But I don't know about CT enterography. Is that any different than a normal abdominal CT?

So Zena, did you talk to your gyno about your pain and he did surgery and found endo? I don't know if I should call my gyno or talk to my Gi about that monthly stomachache. I mean, I guess it's possible that it's not ovulation, but I am almost positive it is.
 
**************
MayOK
Regular lower GI issues since 2007
Currently Un-Dxed
IBD Serology Test Positive for Crohns
Normal C-Scope & Capsule
EGD findings:  Esophagitis and Gastritis
"Proceeding as if it's IBS..."
Currently on 2-week course of Xifaxan
Align Probiotics Daily

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 8/23/2010 9:46 AM (GMT -7)   
Oh, and Jeanneac I forgot - my GP gave me hyomax as an anti-spasmodic and i just take immodium if i am having d and have to go somewhere or am already out and it starts. sometimes the hyomax works and sometimes not. never combats the diarrhea. he told me that the xifaxan was in case my symptoms were a result of small intestinal bacterial overgrowth. i finished it about 3 weeks ago and see him in October to discuss if it helped. it's weird, b/c my problems are so sporadic an unpredictable it will be hard to say if it helped at all unless i have NO problems from here on out whatsoever i guess.
 
**************
MayOK
Regular lower GI issues since 2007
Currently Un-Dxed
IBD Serology Test Positive for Crohns
Normal C-Scope & Capsule
EGD findings:  Esophagitis and Gastritis
"Proceeding as if it's IBS..."
Currently on 2-week course of Xifaxan
Align Probiotics Daily

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/23/2010 10:40 AM (GMT -7)   
MayOk, the OBGYN I was seeing first couldn't figure out why I wasn't having periods (I was maybe 20-22 at the time they stopped) other than that I was "too thin," which was crap...I wasn't THAT thin that they should stop.  When they started testing me due to my stomach pain, twice they found "fluid" in my pelvic region on CT scans or something similar (had so many tests I don't remember which ones showed this).  They said it could be endometriosis since I was also having stomach pain.  That OBGYN decided to do surgery, "just to see what's going on," and found endometriosis and lasered it off and then told me my periods would restart.  Nope.  Anyway, I switched to a young female dr. and when I told her that I was having pain with sex, she said she thought he had missed some of the endometriosis (this was 18 mos after my first surgery) so she did surgery again and found more of it.  That was probably 6 years ago and I don't think the endo has come back, but she has me on Depo Provera to keep it that way.  I can say that a lot of my lower stomach pain had been caused by the endo...too bad endo wasn't my only problem!  =)

Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

jas
Regular Member


Date Joined Apr 2009
Total Posts : 87
   Posted 8/23/2010 12:54 PM (GMT -7)   
I had the small intestine MRI enterography done at Mayo in Scottsdale. The doctor said its a very useful test if there are issues with your small intestine (but my Crohn's was never shown to be outside of my large intestine). It is not a fun test. It is time consuming, requires drinking a lot of very watered down flavored barium (not nearly as bad as straight barium), and your will be confined up to about your shoulder blades. I was allergic to the dye and threw up all the liquid right on the table, but refused to stop because I would have had to start all over. The nurse said it is the worst MRI, next to the heart. It is rather expensive...if I remember correctly it cost about $16,000. But relative to the cost of having the disease I guess its just another drop in the bucket. But the results were helpful.
JAS


Currently taking: started Humira 07.13.10
Recently tried 6MP and developed pancreatitis
Allergic to mesalamines
I miss Remicade.

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 8/23/2010 1:04 PM (GMT -7)   
Holy flip that's expensive. You're in the US? I wonder if the insurance companies balk at the cost and prefer that they do CT scans and radiate us to death instead. :)

I guess I'm just trying to figure out if there's anything else that should have been done to definitely rule it out. i had all the scopes so I'm guessing not. he didn't do any normal blood tests or stool tests or anything like that. and the only CT scan i had ordered was by my GP. It was abdominal and I had to down the barium on a fasted stomach 2 hours prior. I'm assuming on an empty stomach it would have gotten at least most of the way through right? But does anyone know if the GI ordered CTs are different than what I had done? The actual scan may have taken about 15-20 minutes if that long.
 
**************
MayOK
Regular lower GI issues since 2007
Currently Un-Dxed
IBD Serology Test Positive for Crohns
Normal C-Scope & Capsule
EGD findings:  Esophagitis and Gastritis
"Proceeding as if it's IBS..."
Currently on 2-week course of Xifaxan
Align Probiotics Daily

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 8/23/2010 1:48 PM (GMT -7)   
For a CT enterography, you drink a different liquid than for a regular CT scan, perhaps more. It does have a tendency to give you diarrhea too, so be ready for that. My Gi's said it is more accurate than a regular CT scan.

It's all about the money, not patient safety, convenience etc.....
I am allergic to the dye for a CT scan and also they expose us to a lot or radiation. You'd think with those factors, they would let you have an MRI. They say you are only supposed to have one ct scan every four years or it greatly ups your risk of cancers.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, high BP, fibromyalgia, Mixed Connective Tissue Disease
claritin, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, omeprazole for reflux.
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA.
Currently on flagyl and it is helping. Have apt with surgeon soon

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 8/25/2010 7:56 PM (GMT -7)   
Okay, so I have another endo question. Is the only way to get diagnosed to have surgery? That kindof stinks...I mean, what are the odds of my GYN doing anything just b/c I have what I think may be super painful ovulation? I'm assuming he's the one I should mention it to vs. my GI. Right?
 
**************
MayOK
Regular lower GI issues since 2007
Currently Un-Dxed
IBD Serology Test Positive for Crohns
Normal C-Scope & Capsule
EGD findings:  Esophagitis and Gastritis
"Proceeding as if it's IBS..."
Currently on 2-week course of Xifaxan
Align Probiotics Daily

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/26/2010 6:39 AM (GMT -7)   

MayOk, I would mention it to your OBGYN.  Most good GYNs will be able to tell you if your pain sounds like endometriosis. Mine who did surgery "just to see what's going on" is not one I would consider to be good.  He needed to retire.  My current GYN was able to tell me that my pain sounded like endometriosis and that, combined with the fact that I had it previously, convinced her it was worth doing another surgery.  Even if you do have surgery, it's laparoscopic and I only have 3 tiny incision scars.  Only bad part was they had to cut through muscle on two of them, so I was sore for a while.

BTW, my GI now wants to do more tests to make sure I really have Crohns.  This after 5 years of calling it Crohns and treating me with biologics!  So, I'm waiting for them to schedule the enterography, colonscopy and upper GI.  So, maybe my capsule endoscopy and promethius test were both wrong...doesn't seem very likely to me. 


MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 8/26/2010 7:04 AM (GMT -7)   
Oh, wow! You know, it's funny you mention that - I've heard a lot of people say that their pillcam results are being called into question lately - has there been some sort of backlash against that thing? How else are they supposed to get to the small intestine otherwise? Or can the double balloon endoscopy take care of that? I know one guy who is waiting for one of those to biopsy spots that the pillcam detected. Geez, IBD diagnosing is awful! Have the biologics helped? I'd assume so if you've been on them for 5 years. Doesn't that mean something? I mean, if you only had IBS why would those drugs work? Why is your dx suddenly being called into question?
Yes, I will call my OBGYN today then to see what he thinks. I hope your tests go well and that you haven't unnecessarily been on such scary meds.
 
**************
MayOK
Regular lower GI issues since 2007
Currently Un-Dxed
IBD Serology Test Positive for Crohns
Normal C-Scope & Capsule
EGD findings:  Esophagitis and Gastritis
"Proceeding as if it's IBS..."
Currently on 2-week course of Xifaxan
Align Probiotics Daily

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/26/2010 9:17 AM (GMT -7)   
I have all the same questions you have...if the biologics are the only thing that has helped, why are we questioning the dx now?  Basically, my arthritis is very bad and nothing is helping so the GI said we need to find out if it is really Crohn's but if it's just IBS, we can stop the Crohn's treatments and focus on Enbrel and other arthritis meds.  So, why do I have such bad arthritis at a young age if it's not Crohn's related?  If my Crohn's is in remission, the tests aren't going to show anything anyway, will they?  So, he will assume I don't have Crohn's now and take me off the meds and then when it flares, we get to start over with tests again and rediagnose me? I asked if we could do another pill cam, since that's what they dxed me with and he said insurance is not approving these unless MRIs show inflammation but that MRIs don't always show it, so they aren't reliable.  I'm so confused right now!   

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 8/26/2010 9:48 AM (GMT -7)   
I thought it was a foregone conclusion that many with crohn's have arthritis. so why would having arthritis indicate that it's not Crohn's if the meds helped your GI symptoms? Is it possible that you have ankylosing spondylitis (sp?)?
Wow, I thought only the undxed were in limbo - didn't know a dx could be called into question after many years. Is your current doc the one who diagnosed you? I feel so sorry for you and hope everything gets squared away soon.
 
**************
MayOK
Regular lower GI issues since 2007
Currently Un-Dxed
IBD Serology Test Positive for Crohns
Normal C-Scope & Capsule
EGD findings:  Esophagitis and Gastritis
"Proceeding as if it's IBS..."
Currently on 2-week course of Xifaxan
Align Probiotics Daily

rebecca1987
New Member


Date Joined Mar 2010
Total Posts : 10
   Posted 8/26/2010 2:18 PM (GMT -7)   
I had the serology test done and it came back negative.  My Dr. said he couldn't believe it came back negative because he knew that I had Crohn's.  He said that he has had that same problem with other patients and he was going to stop using that test because it is normally wrong. 
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