Tag Archives: disease

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.

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.

Continue reading

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.

Rheumatoid Arthritis: How My Journey Began

When I started this blog the idea was to talk about what works for someone with rheumatoid arthritis.  I wrote a fair amount of posts about what foods and herbs help to fight inflammation and a few about the products that made my life with RA a little easier.  All in all I have been pleased with what I have shared and learned along the way about RA.  I hadn’t planned on all the amazing women and men that I have met through this blog that have given me strength and support. That was an unexpected blessing.  To all of you I am truly grateful.

It occurred to me that I really have not shared my story.  How I got to where in am now and the questions that I have been wrestling with lately.  I haven’t written much because I was hoping to have some answers to report instead of more questions.

So I want to take a step backward and start at the beginning, because  how I got here is important.   I didn’t know until recently how important.

About 6 months after Kevin, my youngest, was born my right ankle started to swell.  I hadn’t twisted it. I hadn’t fallen.  There seemed to be no explaination as to why it was swelling and why it hurt. So I went to an urgent care center where they took and X Ray and really could find nothing wrong with my ankle.  The doctor told me I must have sprained the ankle and gave me an air cast to wear for several weeks with some anti inflammatory drugs to take and sent me on my way.  I followed his instructions; I stayed off the ankle as much as possible, I iced it and I took the medication.  Eventually the ankle improved.

Almost as soon as my ankle improved, my left knee started to swell and hurt.  I thought maybe that I had been over compensating for the ankle and had somehow thrown my knee out of whack.  I iced the knee and took anti inflammatory medication and rested it as much as possible and it seemed to improve after about a month or so.

Shortly after my knee stopped bothering me my left wrist began to give me problems.  It really hurt and was swelling a lot.  I thought maybe that I had carpal tunnel because I spend a good amount of time everyday typing.  I went back to urgent care and they seemed to agree that this could be carpal tunnel and they gave me some wrist guards to wear.

I wore the wrist guards as instructed, took more anti inflammatory medication  and hoped for the best.

While my body was giving me all this trouble I was trying to raise a 10 year old, a 6 year old and a new baby boy.  I was exhausted all the time, but at 35 I figured that I was not as young as I used to be and now I had 3 boys needing my attention, a full time job and a business to run with my husband.  I certainly had a full plate and there were plenty of reasons for me to be tired all the time.

My husband works outside all the time and Lyme disease is something that I thought we were pretty familiar with.  It was Eric who thought that maybe it was Lyme disease that was causing this joint swelling.  It is typical for Lyme disease to kind of skip from one spot on the body to the next wreaking havoc. So a few days later I was back at the urgent care center asking for a Lyme test.  The doctor asked me if I remembered a tick bite and I really didn’t.  We live in a wooded area and there were many times that I have been bitten by ticks. We are really careful with deer tick and I am fairly sure that if I had seen a deer tick in me I would have been tested immediately.  The thing is some of these ticks are the size of a poppy seed.  It is within reason that I could have been bitten by a tick the size of a poppy seed in a location that I could not readily see and not know it.  It doesn’t hurt when they bite.  So it is completely possible that I could have been bit and not known it. That was really not what the doctor wanted to hear but I was able to convince him to give me a Lyme test.

Anyway to make a long story longer… after about a week the test came back positive for Lyme disease.  The doctor put me on zythromax for 5 days.

After two weeks I was still not feeling better.  My wrist was really bothering me and the swelling was so bad that I actually lost the ability to give a thumbs up.  There was so much swelling in my wrist that the ligament that moves the thumb was lifted from its initial location (because of the swelling) so that I could no longer give a thumbs up.

I went back to the doctor and he put me on another course of zythromax with some new anti inflammatory medication and sent me on my way.  He told me to give it another two weeks and I should be feeling better by then.

By the time two weeks had passed not only was my wrist swollen and painful but now my feet were swelling and my knee was back to giving me trouble again.

When the doctor took one look at me and knew that the current course of treatment was not working.  He said to me that this was beyond his level of expertise.  He said that he could send me to a infectious disease specialist or he could send me to a rheumatologist.  He felt that the rheumatologist was probably the best way to go because a rheumatologist could handle Lyme disease as well as any arthritis issues that I might have. He said that there was a new rheumatologist in Providence that he had heard good things about and he set up an initial appointment for me and wished me luck.

This is how my journey began.

Stay tuned to hear how we progressed to where I am today.

Rheumatoid Arthritis: Survival Mode

These past several months have been an exercise in survival.  I am feeling better than I have in months, but I still have a way to go before I am at a place where rheumatoid arthritis is not in every other thought.  I have come to a place of survival.

All this down time has made me wonder how many of us are living with this disease and how many of us are in survival mode?

What is survival mode? For me it is getting through another day.  Surviving the day with rheumatoid arthritis.  Not exactly my idea of fun, but I am getting by. I wonder what survival means to everyone else with this disease.  While survival is better than giving up it is not where I want to be.

I am an optimist so I believe that this is just a temporary setback on my journey to living well with RA.  The idea that this survival mode is a permanent situation is not something that I am willing to entertain ever.  I have too much fight left in me to settle for half way.

I am grateful to be out of bed. Two months ago I was flat on my back all day long.  I am grateful that I am able to tackle small tasks on a daily basis so that I feel that I have accomplished something.  But this is not where I want to be.  I know that I have a ways to go and that this will probably take longer that I originally anticipated, but I am in this for the long haul and I am determined to find a new way to live with this disease without adding toxic chemicals to my body.

Here is what I have been doing so far and it seems to be having an impact on my overall wellness.

  • I am monitoring my diet and have eliminated dairy from my diet. I have found out the hard way that if I do ingest something that has dairy in it I will swell. I have been adding and subtracting different foods from my diet to see what is having an impact on inflammation. So far dairy has had the biggest impact.
  • I have been taking Flaxseed Oil (I can’t do fish oil supplements) and Vitamin D daily.
  • I have found that mediation helps me sleep better and makes mornings a little more manageable.
  • I am starting to be able to exercise ( I am using this term loosely because the rate of speed that I walk would hardly be called exercise, but it is movement and more than my body has seen in months.)
  • I am careful about what I eat and have lost over 25 pounds since January 1, 2010.
  • I spend time every day visualizing what it looks like to be free of stiffness and pain.

So far I am improving and I hope to be back to my old self soon.

In all honesty I have felt this bad on methotrexate.  I have had the same levels of pain, inflammation, and stiffness while on mtx so I have been pleasantly surprised at my progress and so far happy with my decision to look for an alternative solution to mtx.  It has made me wonder on more than one occasion how well the mtx was really working for me.

So for me, tomorrow is a new day with new hope for less pain and inflammation and life mode not just survival mode.

My Rheumatoid Arthritis: One Day Up, One Day Down

Lately I have been one day up, one day down.  One day I am experiencing very little stiffness and pain and the next day I am feeling dreadful.

I have been taking a close look at my diet and how it is effecting how I feel.  I know that there are certain foods that without a doubt have a direct relationship to the amount of inflammation that I am experiencing.  Within an hour or so of eating chocolate I start to swell.  The same holds true for dairy products. Sugar seems to be an issue for me as well.  I don’t know if I need to avoid all sugar altogether or if  there is a certain threshold that once I  go over that level there is a problem.  I don’t know if it is just refined sugar or if  natural sugars will give me the same trouble.  I know that things that have a high sugar content cause me trouble. The good news is that since I have stopped taking the methotrexate, it is easier for me to tell which foods are causing the inflammation. It was as if the medication was masking the effects that food had on my inflammation. It has been a game of hit or miss on what my body will tolerate and what it won’t.  I imagine that this will take some time to find every food that is causing me trouble.

It is hard to plan my life right now because I really don’t know from day to day how I am going to feel.  I am keeping a food journal and each day I write down everything that goes into my body and how I am feeling physically.  It is helping to make it easier to pinpoint what food is effecting me so that I can avoid it in the future.  I have done a lot of reading on the subject and I am very hopeful that once I get a handle on the foods that trigger inflammation for me I will be able to manage the disease much better.

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