What I Learned About The Fibromyalgia Blood Test
It’s been a few years since I shared the news that there is a blood test for fibromyalgia. I was doubtful then if there was a point in having the test, and my thoughts really haven’t changed much. At the moment having a positive result on a fibromyalgia blood test won’t change your treatment, so what’s the point?
Except maybe there might be a point soon. I posted a few months ago about how EpicGenetics, the creator of the fibromyalgia blood test, are now working on a vaccine for fibromyalgia.
It was with that in mind that I agreed to take the test. It also helped that they comped me the test in exchange for the knowledge that I’d write about.
Quick note: The FM/a fibromyalgia blood test is covered by some insurances… mine was not one of them. The out of pocket cost for this test is expensive by most any standards ($936).
Getting the blood test for fibromyalgia
Getting the fibromyalgia blood test done was actually pretty easy. The hardest part was cutting my Tumeric supplement for 30 days prior. If you take any anti-inflammatory medications or supplements you have to stop them for 30 days before the test or it can screw up the results. Because I don’t have a doctor here that would order the test, Dr. Gillis (of EpicGenetics) ordered it for me.
The test kit was delivered to my home and then I had to find a lab that would draw the blood for me. This took a couple of calls but I did find that Quest Diagnostics will do this for less than $25. Once the blood was drawn I placed everything back in the provided box with the provided return shipping label and dropped it off at FedEx.
EpicGenetics asks that you get the labs drawn as late as possible to drop off for the last FedEx pick-up time available. The box is then overnighted. This ensures that the samples are as fresh as possible when they arrive for testing.
A few weeks later I received a letter in the mail with my results.
From a glance you can tell that my results fall into the “extremely confirmable” range. But, what does that mean?
What do the results of the Fm/A fibromyalgia blood test mean?
I was able to get on the phone with Dr. Gillis and ask a few questions to help me better understand my results and the fibromyalgia blood test.
What is the FM/a test testing for?
First off, to understand how I tested to positively we’ve got to understand what this test is looking at. What Dr. Gillis found through several studies is that people with Fibromyalgia typically have very low amounts of specific proteins (also known as cytokines and chemokines) in their blood. It seems that for some reason we may have an inability to produce these proteins properly. The test is measuring these four cytokines and chemokines.
I tested abnormally low. The lower the amounts of these proteins in your body, the higher the likelihood that you have Fibromyalgia. Thus my greater than 90% likelihood of having Fibromyalgia.
Does the Fm/A test rule out other illnesses?
One of the big debates in this whole testing issue is that those proteins may also be low in other illnesses. The initial studies that Dr. Gillis and others have performed have compared the levels of these proteins in patients with Fibromyalgia against RA and Lupus and have been able to successfully differentiate. However, that still leaves CFS and Lyme which are big question marks. I know my friend Donna at FedUpWithFatigue.com who has recently been diagnosed with Lyme is planning to have the FM/a fibromyalgia blood test and we are curious to see what her results show.
That said, Dr. Gillis provided me with the list of the specific cytokines (MIP-1Alpha, MIP-1Beta, IL6, & IL8)and chemokines that are tested for and that are LOW in patients with Fibromyalgia. This study (and possibly others) shows that at least two of these (MIP-1Alpha, MIP-1Beta) are typically increased in patients with Lyme. Another study showed the same with IL6 and IL8. I did a search on Google scholar and didn’t find anything coming up on these proteins with CFS (so that may still be a question mark).
Ok, so now that we have that out of the way…. let’s look at my test results again.
I tested at 92%, which by my understanding means that I have fewer of these four proteins than 92% of the population. I barely have any them, as Dr. Gillis said “it’s as if you are in a sword fight and don’t have a shield to defend yourself.”
How accurate is the fibromyalgia blood test?
I asked Dr. Gillis about this and he said that the test is 93% accurate. That means that it can accurately diagnose fibromylgia 93% of the time. That’s a pretty high %, but it does mean there is some room for error (there always is).
What about the Fibromyalgia vaccine?
The vaccine that EpicGenetics is looking at already exists. It’s the BCG vaccine that is used for Tuburculosis, but it is not given at the same rate. This answers the question of why someone who has had that vaccine could later still get fibromyalgia. Also, it’s less of a vaccine to prevent fibromyalgia than it is using an existing vaccine to treat fibromyalgia.
Dr. Gillis also pointed out that the species of BCG that they are studying is not the same species that is currently being used and it hasn’t been used in decades. BCG has been used to raise these same proteins in cancer patients (for whom the proteins are often destroyed during chemo). Because BCG has been found in those situations to raise the levels of these specific proteins Dr. Gillis and his team believe it will also work to raise the levels in Fibromyalgia patients and in doing so reverse their symptoms.
They will soon begin a medical trial to test this theory and they will use patients who have tested positive with this blood test for Fibromyalgia via the FM/a test as the participants in the study. This is why I finally considered having the FM/a test in the first place.
While my Fibromyalgia symptoms are largely under control there is always room for improvement. Until I’ve improved to the point that I don’t feel at all limited in what I can do I will consider all options and continue to look for new treatments and that may well include this vaccine.
- Fibromyalgia blood test, is it real?
- Fibromyalgia blood test may lead to vaccine
- 10 Things you should know about fibromyalgia
- Fibromyalgia treatments that have helped me most
Behm, F. G., Gavin, I. M., Karpenko, O., Lindgren, V., Gaitonde, S., Gashkoff, P. A., & Gillis, B. S. (2012). Unique immunologic patterns in fibromyalgia. BMC clinical pathology, 12(1), 25.
Grygorczuk, S., Pancewicz, S., Zajkowska, J., Kondrusik, M., Świerzbińska, R., & Hermanowska-Szpakowicz, T. (2004). Concentrations of Macrophage Inflammatory Proteins MIP-1a and MIP-1ß and Interleukin 8 (Il-8) in Lyme Borreliosis. Infection, 32(6), 350-355.
Pietruczuk, A., Świerzbińska, R., Pancewicz, S., Pietruczuk, M., & Hermanowska-Szpakowicz, T. (2006). Serum levels of Interleukin-18 (IL-18), Interleukin-1β (IL-1β), its soluble receptor sIL-1RII and C-reactive protein (CRP) in patients with lyme arthritis. Infection, 34(3), 158-162.