Tag Archives: lyme

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

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.

Lyme Disease Again.

Just when I thought that I was on my way back from this bad turn my body had taken, I got hit with another setback.

Lyme disease.

Again.

I think the universe is trying to tell me something. I’m just not sure what the heck it is.

It just so happens that May is Lyme Disease awareness month.  Let me do my part to make everyone aware that Lyme Disease is not something to mess around with.  It will make you sicker that you ever thought possible. Even now after way too many times with this dreadful disease, it still amazes me that some little critter the size of a poppy seed could do so much damage to my body. If you are ever unsure if you have lyme disease or not trust your instincts and get treatment.  The sooner the better.

The latest bite my outside exposure was literally less than 1 minute.  I was not in a wooded area.  I was not treking through a meadow.  I walked out my front door, said “Man it’s cold out here.” and I walked back in the house. Hours later, I scratched my leg and found the tick and naturally it was a deer tick.

Outside of living in a bubble I am really not sure how to protect myself and my family from this awful disease.  We have done everything the literature suggests to keep ourselves free from these nasty ticks. And yet here I am again with Lyme disease.

I’ll keep you all posted as I am able.

I hope everyone has an amazing Mother’s Day weekend.

🙂

Rheumatoid Arthritis: What Six Months of Sickness Has Taught Me.

The past 6 months have been somewhat like a bad dream.  I never could never have imagined being sick for this long with so many different ailments.  I can’t help but wonder if all the years on methotrexate had such an effect on my immune system that everything kind of shut down for a while. With all this down time I have had the opportunity to learn somethings about myself.  I thought I would share some of what all this sickness has taught me.

  • Trust your instincts. When two of my doctors had conflicting opinions on whether or not I had a second or continuing Lyme infection I should have trusted my instincts.  I could have saved myself valuable time and pain and not have subjected myself to way too many diagnostic tests had I just trusted my gut.  I know my body better than anyone else and I knew that I still had Lyme Disease. I shouldn’t have allowed my rheumatologist to talk me into more tests to prove that her opinion was right when I knew deep down inside all I really needed was another treatment of antibiotics.  When I finally got the antibiotics was when the symptoms went away and I started to feel better.  Lesson learned. Again. I hope this time it sticks.

  • Lyme Disease is something to take very seriously. I have had Lyme Disease in the past.  I thought that I knew and understood what this disease could do.  I could not have been more wrong.  I have never in my entire life felt more physically ill than I did with Lyme Disease.  I can’t say whether or not the Rheumatoid Arthritis (RA) had an effect on the severity of the Lyme Disease but I know that the treatments for the RA had an effect on how well my body was able to handle Lyme Disease.

  • I need to nourish my body and my soul. I have always been the one who puts everyone’s needs before mine.  It wasn’t a conscience decision, but none the less other things took priority in my life. Now every day I am slowing down and taking time to do things that nourish my soul.  Things that bring me joy nourish my self. I find that I have more patience and energy for other things after making my self a priority. Before I put anything into my body I am asking myself will it nourish me or fill me.  They are two very different ideas. I have tried to eat responsibly in the past, but I haven’t always looked at what I am putting into my body as nourishment as opposed to something that will fill me up.
  • Don’t be afraid to ask for help. Being an independent person and a bit of a control freak I frequently would rather do something myself than ask for help.  Part of me just didn’t want RA to get the best of me.  I felt like it was a bit of a battle of wills.  I wasn’t going to let RA take over my life completely, I could do most things myself and I hated to ask anyone for help.  Being as sick as I have been, I have had no choice but to ask for help.  There were days when getting out of bed to go to the bathroom was an ordeal.  An extremely painful ordeal.  It was simply impossible not to ask for help with some of the most basic of needs.  I discovered that the world did not end and it was okay if things were not done “my way”.
  • A clean house is nice but really not all that important. I used to care very much about how clean my house was.  I felt that how my house looked was a reflection on me and how I cared for my family.  I know that sounds a little nutty but that is how I felt.  I really felt like I could not physically do a great many things anymore but I could take care of my family and a clean house was part of that.  Of course now looking back I can see how crazy that whole idea sounds.  My house currently is picked up. No one is going to trip over anything in my house, but it is a far cry from clean and I really don’t care.  I could spend the next few hours cleaning, or I could spend the next few hours playing with Kevin or reading a good book.  Now I choose something that will fill me up instead of depleting my resources.

  • Connecting with other people that know and understand what it’s like to have RA is important. Knowing that I am not alone in the day to day challenges that this disease brings has helped me in so many ways.  There is comfort in knowing that there are people out there that completely understand what I am going through.  I am very grateful to all the new friends that I have found here and for their kindness and support.

A New Rheumatoid Arthritis Challenge.

I have not written a post in quite some time now.  I have been going through some physical challenges since this summer.  It seems that lyme disease does not want to let go of me right now and that is complicating the rheumatoid arthritis.  You cannot treat both diseases at the same time so something has got to give and it has been and will continue to be the RA treatment until I am convinced that the lyme disease is gone for good.

I have spent the better part of the past 4 months without the RA treatments that in the past were working for me.  So the challenge right now is finding some natural ways to deal with the inflammation and pain of rheumatoid arthritis without it countering the lyme treatments. I am trying right now to find the right combination of diet and supplements that will give me the best results.

This is a new development for me.  Over the past 8 years I have never gone without medication for such an extended period of time.  It has caused me to question a great many things.  In the beginning I was mostly afraid.  I almost feel like the medication was somewhat of a crutch for me.  I am not saying that we shouldn’t seek out medication for RA.  What I am saying is that maybe I didn’t look into some of the other options available to me because I didn’t have to.  The medication worked so well that there really wasn’t any need to look further.

I feel like I am embarking on a new direction for my health.  It is a little scary for me.  There is a certain amount of comfort that goes with handing over the control to the doctor. But now that I have made the decision to take an alternative route,  I am feeling empowered that I am in control of my own health and I am hopeful that this will be the right decision for me and my family.

I am hoping that I will be able to post more in the future and keep you up to date on my progress.  But for now I am trying to focus on my health and healing and trying to take each day as it comes.  I am truly grateful to everyone who has expressed their love and support.  It means more than I can say.

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