Tag Archives: RA

Rheumatoid Arthritis: RA Factor: What Does it Really Mean

microscope copy

What is an RA factor? Well to start, RA factor is a protein. This protein is made by the immune system to attack certain bacteria and viruses. The blood test to measure the RA factor  is used to help diagnose rheumatoid arthritis and other diseases, viruses and infections.   What I was told by my rheumatologist and believed,  was that my elevated RA factor along with my swollen joints indicated rheumatoid arthritis. Those two factors alone do NOT necessarily mean you have RA. In my case it did not.

An elevated RA factor can indicate increased autoimmune activity in the body that does not necessarily relate to rheumatoid arthritis. It is extremely important that all  the symptoms be considered before a diagnosis is made and no one test can indicate disease. High levels of RA factor can be found with patients suffering from viruses like Epstein-Barr and diseases like Hepatitis.

Other tests that should be done at the same time include:

  • ANA                          (Anti Nuclear Antibody)
  • Anti-CCP                 (Anti-cyclic citrullinated Peptide)
  • CRP                            (C-reactive Protein)
  • CBC                            (Complete Blood Count)
  • ESR                            (Erythrocyte Sedimentation Rate or Sed Rate)

I will discuss these tests in future posts.

Rheumatoid Arthritis: SED Rate

Photo Credit: Healtone.com

Photo Credit: Healtone.com

When I was first diagnosed with Rheumatoid Arthritis (RA) the doctors started talking to me like I knew what all these terms and tests meant. Even after getting an explanation from the doctors, I was so overwhelmed with information that my head was swimming with facts and figures. After I had time to try absorb what they were saying, I realized I needed more information. I wanted to know more than what the test was for, but I wanted to know how it related to my particular heath.

SED rate was one of those terms that doctors talked about. The ESR (Erythrocyte Sedimentation Rate) also know as SED rate is a blood test that measures the how quickly your red blood cells settle to the bottom of a test tube in an hour. The more Erythrocytes (red blood cells) that fall to the bottom, the higher the SED rate.

The test is used to detect signs of inflammation not the cause of inflammation. A normal SED rate is between 15 and 20 millimeters per hour. An elevated SED rate may have many possible causes so it’s important to discuss with your doctor all the potential reasons your SED rate is high.

LivingRheum is Going Green for Lyme Disease Awareness Month

Liime-green-ribbon

The past four years I have spent talking about how to live well with chronic disease.The mission of this blog was to talk about not only living with chronic disease, but living as well as you can with it.

Initially I thought I had RA (Rheumatoid Arthritis). I received a diagnosis in 2001 and I trusted the doctors.

I have learned a lot since then. A lot about myself, RA and Lyme disease.

In trusting the medical professionals more than myself, I spent 9 years being treated for a disease I never had. While other deadly diseases were wreaking havoc throughout my entire body. And to add insult to injury, the treatments that were supposed to help me actually made my body  the perfect host for these bacteria.

What I actually had (and still do) is Lyme disease (Borrelia Burgdorferi), Babesia and Protomyxzoa Rheumatica (AKA FL1953 or “The Fry Bug:)

That’s a mouthful for sure.

All three diseases are parasitic diseases that attack the joints, the central nervous system, the heart, eyes, lungs, stomach, intestines, liver, uterus and spleen just to name a few.

These are serious diseases that have been marginalized by the medical community for far too long. The result has been thousands of people suffering needlessly for years unable to get a correct diagnosis.

There are many reasons for the failings in the medical community most of which are discussed in the documentary Under Our Skin. I would strongly suggest that everyone, whether you are sick or not, watch this movie. It truly is an enlightening film.

So in honor of all my fellow Lyme Warriors and in memory of all those who fought so hard only to eventually succumb to this insidious disease, for Lyme disease awareness Month, LivingRheum.com is going green for the month of May. And I will try to share as much information about this and other vector-borne infectious diseases as I can.

Under Our Skin: A Real Eye Opener

Have you ever felt like the universe is trying to tell you something?

Have you ever heard the same message again and again and then finally, one day you actually listen?

There were many messages over the years that the universe was sending to me that I just didn’t hear. Maybe I was too busy to listen. Maybe I was just trying to get through the day. I don’t know why the other messages didn’t get through and this one did, but I will forever be grateful that I sat down and watched Under Our Skin.

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Misdiagnosed with Rheumatoid Arthritis: My Lyme Disease Journey Continues

A little more than a year and a half ago, I started treatment for Lyme disease. After 10 years of misdiagnosis and treatment for rheumatoid arthritis my immune system was seriously compromised.

I would love to tell you that I simply took some antibiotics and instantly felt better, but unfortunately that has not been the case. My body was in pretty bad shape. By the time I finally got the correct diagnosis, I not only had to try and kill these Lyme bacteria, but I had to rebuild my immune system that we had been suppressing for 10 years.

What I didn’t know back then that in addition to Lyme disease, I also had what is now known as protozoa rheumatica. Treating both the disease and the biofilm has made a huge difference in how I feel.

For the first time in over 10 years my SED rate is normal. My RA factor (RF)which had been as high as 718 is not down to 115. It has been going down by over 100 points every 8 weeks. That means that 7 weeks from now it will be normal if it follows the same pattern. I have finally turned the corner and feel like I have made some real progress in getting well.

I’m not running any marathons, but I am able to dress myself once again and I can roll over in bed, something I struggled with 18 months ago. It’s the little things as well as the big that became impossible. I could not cut my own food, cover myself with a sheet, let a lone a blanket. I couldn’t put socks and shoes on and forget about tying them.

The pain was more than I had bargained for as well. My joints swelled to a point where at times I could barely recognize them. Here is a picture of my ankle then (scary, isn’t it?)

Swollen ankle

and here it is today (much better, I’d say).This is the same ankle that was the first sign of problem. And the same ankle that the rheumatologist shot up with steroids. (which by the way, did not help)  As you can see I could have picked up the coffee table a bit before taking the picture, but my priorities have changed a lot since this all began.  Clean is nice, but not as important as it used to be.

My ankle now

The difference feels amazing.

There were times that I was genuinely scared. It took me a long time to get this diagnosis and I had finally trusted my instincts and knew deep down that this was the right path for me, but years of being told that I was wrong, that this was RA had taken a toll. It was in the darkest of times that I found myself doubting my choice. After all there had been so many doctors telling me that this was RA, how could I be absolutely sure that this doctor was right. I kept hearing the warnings of my first rheumatologist in my head, “We don’t want you to end up in a wheelchair. Do we?”

Unfortunately that is exactly what happened. Last year, my walking had become so bad and so painful that I had to rent a wheelchair for my nephews graduation. It was a scary time. I had come to a place where I didn’t trust any doctor, but I desperately needed help. I finally came to the decision that I had given the other doctors 10 years to help me and look what happened. I needed to give this one at least a reasonable amount of time to do the same. It became increasingly frightening when every six weeks my RA factor kept going up.

It took a fair amount of resolve to keep going and continue trusting my gut. It wasn’t until over a year into treatment that my RA factor started to go down. It has been steadily going down every since.

I no longer need a wheelchair and the simple act of walking is no longer painful. I do use a cane for balance, but I am hoping that soon I will be able to get rid of that as well.

I don’t know how much longer I will be fighting this battle.

There will be scars.

But in the end I will survive and hopefully help a few people, who see themselves in my story.

 

Misdiagnosed with Rheumatoid Arthritis (RA): My Lyme Disease Story

As some of you may have heard, I just recently found that I was misdiagnosed with rheumatoid arthritis (RA). I have Lyme Disease.

Anyone who has followed this blog probably knows that I thought that I had Rheumatoid Arthritis (RA) for over 9 years. I have always had some doubt about what was going on with my body and the effectiveness of the treatments the doctors were prescribing. But I trusted my doctors more than I trusted my instincts. My story is a cautionary tale for anyone who has been diagnosed with an autoimmune disease.

Let me start by saying that we live in rural Rhode Island. We have a small 3/4 acre wooded lot. All sorts of wild life can be found in our yard at any given time and there is no shortage of deer that visit our property. We moved out here to raise our family in a quiet, serene place with good schools and friendly neighbors. Unfortunately, with the good comes the bad, and the deer carry ticks that carry Lyme Disease.

Each member of my family at one time or another has had Lyme Disease. It is not uncommon to be outside for only a few moments and pick up one of the poppy seed-sized ticks. For the most part we have all either tested positive with Lyme Disease or the tick if we were able to keep it tested positive with the disease.

9 years ago I had been bitten by a tick. At the time, I was tending to my newborn son, and had two older boys to watch over as well. In prior exposures to the disease, I had felt “flu like symptoms” and that was my cue to get tested. I don’t know if it was adjusting to three boys and 2 jobs or if I was just too busy to notice, but I really don’t remember any “flu like symptoms”.

It started with my ankle. It hurt and was swollen so I went to the urgent care center where they X-rayed it and told me they could find nothing wrong with me. The doctor prescribed an anti-inflammatory and gave me and air-cast. We were going with the assumption that I must have sprained my ankle even though I couldn’t remember doing anything out of the ordinary.

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Innovative New Treatments for Rheumatoid Arthritis (RA)

Gary S. Firestein, MD,  of UC San Diego Medical Center speaks about innovative treatments for rheumatoid arthritis including promising new findings with inhibitors of signal transduction. It is good to know that there are new treatment options on the horizon for those whose current therapy is unsuccessful.  There is not a one size fits all remedy for this disease. I think that it is important to have choices and options.

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