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Old 03-27-2008, 04:11 PM   #1
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Exclamation Great News!! APA Assay - Blood Test For Fibromyalgia!

I found an announcement on the internet in a newsletter dated today published by Autoimmune Technologies that a blood test has been patented to specifically diagnose fibromyalgia!

This test is undergoing the clinical trials necessary to support a regulatory filing for FDA approval. For diagnostic tests, the FDA requires that tests be produced in kit form, and the kit is what the FDA approves and regulates.

As I understand it, FDA approvals for blood tests (kits) go much faster than the drug trials and we may see this test available in our labs in less than 2 years!

This test "could objectively confirm your physician's diagnosis, and it might also help in determining your treatment. A positive result on the APA Assay means that a fibromyalgia patient's immune system is producing anti-polymer antibodies. This is the first evidence that an immune response is associated with fibromyalgia as it is with rheumatoid arthritis and lupus. Immune-modulating drugs have not been thought to be appropriate for fibromyalgia in the past, but now the APA Assay could lend considerable support to a physician's decision to prescribe these drugs for a fibromyalgia patient."

This is such good news for all of us fibromytes, not only for the potential to greatly improve the treatment(s) available to us, but will also lend support to us in terms of validation and getting approval for our disability claims!!!

I would strongly encourage all of you interested in reading more to google "APA Assay" for more details, especially since my brain fog often keeps me from properly relaying information!

Let's all keep our fingers crossed!!

 
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Old 03-27-2008, 04:15 PM   #2
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

Whoops, sorry. Guess they didn't like that word I used.

I meant to say try "searching for "APA Assay".

 
Old 03-28-2008, 07:07 AM   #3
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

thanks robin,
good info. i will check it out.
peace,
blue

 
Old 03-28-2008, 07:12 AM   #4
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

facinating. thanks again my friend. it will be most interesting to see where this goes. there sure are alot of people who want to help us live better lives. very cool. bless them.
peace,
blue

 
Old 03-28-2008, 01:14 PM   #5
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

You're welcome Blue. I know how much we all struggle ... working with our doctors to try and find ways to relieve our symptoms so we can become more functional.

Also, I'm sure I'm not the only one who is so sick and tired of being treated as though it's all in our heads, and we're just all lazy, etc., etc., and hearing my disability insurance carrier tell me things like, "we include people with fibromyalgia with the same group of people who have psychiatric illnesses because these illnesses are primarily based on self-reported symptoms and we, therefore, only pay benefits on a limited basis" (for a lifetime total of 24months)!!!!

And yes, I agree, God bless those who are trying to do things to help us.

Robin

 
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Old 03-28-2008, 05:31 PM   #6
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

Wow, after reading about the APA assay I am certainly intrigued. My only concern would be that since the APA antibody is still somewhat of a mystery, and because not all fibro patients have this antibody, I worry about the possibility of misinformed or misguided doctors who will incorrectly reverse a fibro dx or fail to diagnose one because of a negative APA test--much like what happens with things like Lyme disease, etc.
That said, this is a great advancement in the study of fibro and I hope will lead to lots more promising research.

 
Old 03-28-2008, 07:35 PM   #7
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

I must admit I share your concerns.

Speaking of Lymes, I heard some rather startling info regarding the standard lymes blood test that most labs use today. I was watching a show on the Discovery Health Channel about a teenage girl (who I'll refer to as girl A) who was suffering with many of the same symptoms as FM, Lymes, etc. Over the course of several years, they put her through many tests, including Lymes which they ruled out due to a negative blood test. They still didn't really know for sure what was wrong other than she was feeling quite ill, had to drop out of school, etc.

I don't want this to be a long post, so I'll get to the point. Several years later she met a girl her age (girl B) with identical symptoms but she got a postive diagnosis for Lymes. Girl A decided to go see Girl B's doctor who had Girl A re-tested for Lymes only this time Girl A tested positive.

This doctor went on to say that the standard Lymes blood test used in most labs today only detects lymes disease in 20% of the patients who actually are infected with Lymes!!

He went on to say that there is a much more accurate (for lack of a better word) test for lymes out there but is currently only available in a few labs and that many if not most physicians aren't even aware of it!!

It's almost scary, isn't it?!

Anyway, I guess this is just another reminder that we have to try and educate ourselves as much as possible instead of expecting our docs to know everything!

I keep seeing people on here ask each other if they've been tested for Lymes Disease so I actually had intended to post a thread about this just to keep people informed.

Take care,

Robin

 
Old 03-29-2008, 06:03 AM   #8
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

I had a similar panel done recently and was told that the doctor suspected Sjogren's and FMS based on my results. I know that I was positive for 2 of the Immune studies (IGG & IGM) and had an elevated ANA as well. I think these tests are available individually just not in a panel as will be in this instance. Mine were ordered by the 3rd Rheumatologist I have seen and he was recommended as very knowledgeable in the treatment of FMS. I was placed on Plaquenil, a very old Rheumatological drug, and was told that it affects the auto-immune system as a side effect and has been shown to be effective in FMS although not approved specifically for its treatment. I am like most here, that I will give most anything a try in search of any improvement of symptoms. I am happy to see that strides are being made to give us some viable diagnostic and treatment option. I have to appreciate the efforts of this and other boards that are seeking to get info about our plight to the forefront of research by bringing our disease into the news. I hope that the trend continues and that other efforts will continue to be made.

 
Old 03-29-2008, 08:51 AM   #9
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

Goldyfm,

Thanks for your reply. I have a couple of questions for you:

1) Has the Plaquenil been helpful for you and, if so, in what way?

2) What are "IGG & IGM"?

Hope you're having a good day.

 
Old 03-29-2008, 10:54 AM   #10
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

Hi Lost Robin! I have not begun the Plaquenil yet. I have to have an eye exam before beginning as it sometimes causes eye issues. So I will begin as soon as that is taken care of. As for the IGG & IGM, I had to search for those, as I remember, they are genetic markers of some sort for Immune Disorders. I had those two elevated, however there are many others. It makes for good reading if you would like to research. I think they are diagnostic for Lupus and some other Immune disorders. I think I was tested as I have two siblings who have seen the same Rheumatologist who also have FMS and Sjogren's. I think he strongly suggested a familial genetic link in my case.

 
Old 03-29-2008, 03:29 PM   #11
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

IGG and IGM are what's known as immunoglobulins in the medical world. BUT, and I can't stress this enough, just because one or both comes back positive doesn't mean there's anything that's causing them to be elevated. They fall into the category of "not quite sure how it works, but sometimes it's linked to auto-immune disorders".

I too am skeptical of this new test and agree with TiredPoet's assessment. It very well could lead to being misdiagnosed, or to real diagnoses of FM being reversed because the test is negative. Yes it's a good step forward in the research, but I think FM itself needs to be better understood before any sort of lab test is applied. They need to figure out if it's auto-immune based or if it's CNS based or something else. THEN an accurate test can be developed.

 
Old 03-30-2008, 02:00 PM   #12
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

Grapedy,

I think I've acknowledged pretty much everything you're saying in my posts. That's why I also encouraged people to research this on their own.

My point was that the fact alone that there is now (or soon will be) a blood test that specifically screens for FM finally gives us an objective tool for diagnosing FM which helps give us credibility and can also help with our treatment. I think I've finally reached the point where I almost don't care what most people think anymore, i.e., if "joe public" thinks we're just "lazy" and/or "faking it." Not much we can do about that. I do, however, have to care if my insurance carrier believes me. Therefore, as far as I'm concerned, the APA should help us to that end.

The ANA which is used for screening for RA, Lupus, etc. is also nothing more than one tool for aiding in these diagnoses. This test, also, often results in false negatives. And, as I mentioned earlier in this thread, the most commonly used lab test for Lymes is FAR from being accurate.

I'm sorry if I mis-stated something or was unclear. As I warned in the beginning of my thread, I'm not always good at processing and communicating information with this terrible brain fog.

Hope you're having a good day.

 
Old 03-30-2008, 02:24 PM   #13
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

Robin, I think I saw that show you referred to. (There's also a documentary called Under Our Skin coming out soon that I'm excited to see the reaction to). My Lyme doctor estimates I've had Lyme for as long as 10 years--but I have only a clinical diagnosis and not a positive blood test. I know there's a lab in California called Igenex that is supposed to have more accurate testing, but it's astronomically expensive and I simply can't afford it.

I think, as I said, the test could be a good thing in terms of more research and awareness of fibro, but of course, as I think we're all saying, it won't allow us fibro sufferers to stop being vigilant and being our own advocates. Which in my opinion is one of the hardest things about having fibro, having an illness where you can't just automatically count on the medical community. If you have a disease that's well known and well studied, like diabetes, you go to the doctor and you can (for the most part) trust that he or she will know exactly what to do for you. With us we have to use our precious little energy to research our own illness and symptoms and in many cases decide for ourselves what course of treatment to take. (And then, on many occasions, in being so vigilant and gathering research we are thought of as hypochondriacs or "problem patients" who think we know more than our doctors, which is of course not the case.)

On a quick aside: Another thing that got me thinking about your post over the weekend--I was watching a rerun of an episode of CSI: NY and a murder victim was found with a tick on her body that they noted "carries Lyme," so they assumed the killer had Lyme. Later they found the suspect, who they noted was acting as if he had characteristic Lyme symptoms--(which are also characteristic Fibro symptoms, but Fibro was never mentioned) and then the suspect told them he actually had acute MS and because it's incurable he was planning to commit suicide. It got me thinking about how there are so many ways to inform the public about these disorders and diseases like Fibro and Lyme, which have overlapping symptoms or mimic so many other things, like MS, and for which there is no accurate testing. Popular culture is such a good medium to inform people. I was so disappointed to hear it used as a plot device that went nowhere and left a misleading idea of it in the viewer's mind. Imagine the power of using a popular TV show like Law & Order or Grey's Anatomy to accurately portray fibromyalgia and help educate the general public!

 
Old 03-30-2008, 03:22 PM   #14
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

Tiredpoet,

All I have to say is AMEN to everything you just wrote!!

Okay, maybe I DO have one more thing to add ...

The last comment you made about "popular culture" being such a good medium to inform people..." reminded me how I was thinking over the weekend why is it in this day and age when the dissemination of information has never been easier, that our own doctors seem to be so "uninformed" about so many things that are so important to the diagnosis and treatment of their patients!!!

Gee, maybe THEY are the "lazy ones"!

 
Old 03-31-2008, 01:52 PM   #15
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Re: Great News!! APA Assay - Blood Test For Fibromyalgia!

It's more like information overload on the doctors' part. There's so much that they have to keep up with, they have to do over 100 hours of continuing education every year on the basics for the specialty, see astronomical numbers of patients just to make ends meet and fight with insurance companies and hospitals to do what they think is best for their patients. So unless the disease process is something they see a lot of in their practice, they simply will not make the time to learn more about something they rarely see. That would mean taking time away from their families or not having a chance to fully relax, or cutting back on sleep. And we all know how dangerous that is. I'd rather have a rested but uninformed doctor over a knowledgeable and exhausted one. They have precious little time that is not consumed with work of some sort.

There is so much that goes on behind the waiting room door that the patients never know about. It is so unbelievably easy for a doctor to get burned out and reach the point where he is so exhausted he CAN'T sleep. It's happened to my dad twice, and there's a good chance it could happen again this year.

It's not that most of them don't care whether or not they're up-to-date on everything, it's that they don't have time to stay on top of something that they don't see every day.

 
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