Check out Vanessa's excellent website and blog here.
Showing posts with label life with Lyme. Show all posts
Showing posts with label life with Lyme. Show all posts
Tuesday, April 22, 2014
Rain on a Distant Roof
Vanessa Farnsworth is a Canadian writer who has published a book journaling her experience with Lyme disease while trying to access help through the Canadian health care system. I've read excerpts of her book online and it is very good.....gripping, in fact. Nevertheless, I'm not sure if I can bring myself to read it.....yet. It's hitting a little too close to home for me at the moment. I'm sure I will pick it up at some point as I love non-fiction. Thank you, Vanessa, for sharing your story with us, and exposing the horror of this illness as well as the flaws in our medical system.
Check out Vanessa's excellent website and blog here.
Check out Vanessa's excellent website and blog here.
Saturday, April 05, 2014
It's my blog and I'll cry if I want to!
I feel the need to vent, and so I think I will.
This has been such a week of emotions! Fear, discouragement, frustration, worry.
I don't mean to cause additional stress to anyone out there who is suffering from Lyme disease. Honestly, my main purpose in creating this blog was to provide information and ENCOURAGEMENT to those who stumble upon it. I hope I have helped many of you to find the help you needed, and to have hope that your situation will improve.
Nevertheless, this has been a very difficult week for me. I find my self smack dab in the middle of a Lyme relapse. Sigh! For at least a year and a half, I had been functioning at about 85-95% of my normal self, and that was great! It was so amazing to think that I had beat this illness, or at least pummelled it into submission/remission.
Until......
I went off the antibiotics in early January. I felt fine for the first month of drug-free living, but then that insidious symptom returned one night, out of the blue. The brain vibration and electrical body sensation when I'm about to drift off to sleep.
Honestly.......WHAT IS WITH THAT?????????????? Why can't a neurologist tell me what that is? Why doesn't an MRI show something? Why did my sleep study report a normal sleep pattern?
Lyme is like that. We look so normal on the outside, and the tests we have done report that we're normal on the inside. Meanwhile, the borrelia is drilling deep into our tissues and brains and wreaking havoc on all of our organ systems.
Several symptoms have returned:
the head vibrations / electrical sensations
a vibrating feeling in my body
head pressure
digestion problems
a profound fatigue
And a lovely new symptom that occurred for the first time yesterday - vertigo! It only happened for 2 minutes while I was teaching a class, but I felt like I couldn't get my balance....like I was walking sideways! Maybe it wasn't Lyme-related at all; I had just hopped down from a table I had been sitting on. Perhaps something jarred in my inner ear, who knows.
The fatigue has made it quite hard to get through my days in the past two weeks, and the tears are flowing pretty easily. I'm thankful that I've been able to speak to my Lyme doctor over the phone and get back on antibiotics. I suppose I should also be thankful that I am able to get sleep with the help of sleep medication. I sure have a love-hate relationship with Big Pharma.
I know that for the next few months, I'll need to really focus on helping my body to heal by eating a very clean diet devoid of sugars and starches.....as hard as that is for me. I need to avoid stress and get adequate sleep. I need to rest when my body tells me so. I need to exercise. I need to pray and spend time with Jesus, who promises to be my help in times of trouble.
And I need to wait.....and wait.....and wait.....until things settle down in my body again. I know it will happen because it has before.
I hope you will not be discouraged by what you have read; that was not my intention. I just wanted to be honest with you about my Lyme journey.
Many blessings to you all. I hope that in a few months, I'll be able to report back to you with good news.
This has been such a week of emotions! Fear, discouragement, frustration, worry.
I don't mean to cause additional stress to anyone out there who is suffering from Lyme disease. Honestly, my main purpose in creating this blog was to provide information and ENCOURAGEMENT to those who stumble upon it. I hope I have helped many of you to find the help you needed, and to have hope that your situation will improve.
Nevertheless, this has been a very difficult week for me. I find my self smack dab in the middle of a Lyme relapse. Sigh! For at least a year and a half, I had been functioning at about 85-95% of my normal self, and that was great! It was so amazing to think that I had beat this illness, or at least pummelled it into submission/remission.
Until......
I went off the antibiotics in early January. I felt fine for the first month of drug-free living, but then that insidious symptom returned one night, out of the blue. The brain vibration and electrical body sensation when I'm about to drift off to sleep.
Honestly.......WHAT IS WITH THAT?????????????? Why can't a neurologist tell me what that is? Why doesn't an MRI show something? Why did my sleep study report a normal sleep pattern?
Lyme is like that. We look so normal on the outside, and the tests we have done report that we're normal on the inside. Meanwhile, the borrelia is drilling deep into our tissues and brains and wreaking havoc on all of our organ systems.
Several symptoms have returned:
the head vibrations / electrical sensations
a vibrating feeling in my body
head pressure
digestion problems
a profound fatigue
And a lovely new symptom that occurred for the first time yesterday - vertigo! It only happened for 2 minutes while I was teaching a class, but I felt like I couldn't get my balance....like I was walking sideways! Maybe it wasn't Lyme-related at all; I had just hopped down from a table I had been sitting on. Perhaps something jarred in my inner ear, who knows.
The fatigue has made it quite hard to get through my days in the past two weeks, and the tears are flowing pretty easily. I'm thankful that I've been able to speak to my Lyme doctor over the phone and get back on antibiotics. I suppose I should also be thankful that I am able to get sleep with the help of sleep medication. I sure have a love-hate relationship with Big Pharma.
I know that for the next few months, I'll need to really focus on helping my body to heal by eating a very clean diet devoid of sugars and starches.....as hard as that is for me. I need to avoid stress and get adequate sleep. I need to rest when my body tells me so. I need to exercise. I need to pray and spend time with Jesus, who promises to be my help in times of trouble.
And I need to wait.....and wait.....and wait.....until things settle down in my body again. I know it will happen because it has before.
I hope you will not be discouraged by what you have read; that was not my intention. I just wanted to be honest with you about my Lyme journey.
Many blessings to you all. I hope that in a few months, I'll be able to report back to you with good news.
Wednesday, February 05, 2014
And the saga continues...
Gee, wasn't it just a couple of weeks ago that I wrote about going off my antibiotics....hopefully for good? Thank goodness I didn't bother to celebrate because it would have been a terrible let down!
A week ago, a few symptoms crept back.....vibrations in my legs and body, and weird head vibrations when I'm falling asleep (which prevent me from actually getting to sleep). Sleep meds have helped immensely and I'm taking some herbs/supplements to help my symptoms: Banderol and Samento, and curcumin (along with all of my regular supplements).
My LLMD told me to wait it out and see if the symptoms would go away on their own. Perhaps they are stress-induced. Yes, it's been a stressful month.....4 family birthdays, report cards, and added workload due to my hubby having a brutal flu for a couple of weeks. Lack of sleep, lack of regular exercise (although I am trying!), and a little too much sugar in the diet could also be contributors to my problem. It's time to clean things up!
I have my next doctor's appointment in 2 weeks, so I guess I'll see what he will want me to do about this. Go back on antibiotics??? I hope not! But I'll do whatever I need to do to keep these symptoms at bay and be able to live a normal life.
I'm so enjoying the normality....even banality....of life these days, and never ever want to take the simple things for granted again!
A week ago, a few symptoms crept back.....vibrations in my legs and body, and weird head vibrations when I'm falling asleep (which prevent me from actually getting to sleep). Sleep meds have helped immensely and I'm taking some herbs/supplements to help my symptoms: Banderol and Samento, and curcumin (along with all of my regular supplements).
My LLMD told me to wait it out and see if the symptoms would go away on their own. Perhaps they are stress-induced. Yes, it's been a stressful month.....4 family birthdays, report cards, and added workload due to my hubby having a brutal flu for a couple of weeks. Lack of sleep, lack of regular exercise (although I am trying!), and a little too much sugar in the diet could also be contributors to my problem. It's time to clean things up!
I have my next doctor's appointment in 2 weeks, so I guess I'll see what he will want me to do about this. Go back on antibiotics??? I hope not! But I'll do whatever I need to do to keep these symptoms at bay and be able to live a normal life.
I'm so enjoying the normality....even banality....of life these days, and never ever want to take the simple things for granted again!
Sunday, September 15, 2013
Back in the driver's seat
Today I had a realization.....a good one! I finally feel like I am back in control of my life, back in the driver's seat! Lyme has moved over. It's not sitting in the passenger seat, nor the back seat. It's in the trunk!
Yes, it's still with me, but I only notice it once in a while.....like that jug of windshield washer fluid in the trunk that clunks now and then when you take a corner. But I am driving the car with my hands firmly on that wheel. And it feels so good to no longer be ruled by the borrelia burgdorferi.
Returning to my teaching job this September has been great, even therapeutic. I'm busy, my mind is active, and I'm so happy to be teaching my lovely students. I love thinking about my lesson plans, my units, and YES, even the marking. I'm honestly so glad and grateful to be able to keep up with the demands of my job.
Exercise is becoming another good routine that I'm putting into place, and that I'm happy to be able to do. (Wow, I can hardly believe I'm saying this.) A lot of flab built up since I got sick in 2011! Laying on the couch, unable to even walk around the block, and feeding yourself comfort foods will do that, right? It's time for me to get my body back in shape, build up my stamina, and tone those muscles.
Finally, I feel so good to be getting my eating under control, not just for weight loss, but for good health and a healthy immune system. For over a week now, I've been counting the "points" of everything going into my mouth (à la Weight Watchers). I've set a weight loss goal for next July, so we'll see how that goes. So far so good!
OK, so Lyme may always be with me, but it isn't (and shouldn't be) the focal point of my life anymore. It is time to move on from that horror show. It may pop by for a little unexpected visit now and then, causing me some physical symptoms, but I won't be inviting it in to wreak havoc on my emotions. I have better and more meaningful things to do with my time.
Forgetting what lies behind
and reaching forward to what lies ahead,
I press on toward the goal for the prize
of the upward call of God in Christ Jesus.
Philippians 3:13, 14
Sunday, May 12, 2013
What has Lyme done for you lately?
How has Lyme disease changed you? Do you ever think about that? Has it been for the better or the worse? As for me.......
Lyme has made me acutely aware of my mortality. I truly thought I was dying and may very well have if I had not found a Lyme-literate physician.
Lyme has brought me closer to God. He is ultimately in control of my life and I am so OK with that. He is my comfort and my hope.
Lyme has made me less carefree about life. I'm not always sure how I will feel from day to day or sometimes hour to hour.
Lyme has made me grateful. I can still hold down a job, and be a wife and mother. I have supportive friends and a loving family. And my health has improved immensely in the past two years. I have lots to be thankful for.
Lyme has made me more aware of my limitations. Out for a walk last night, I noticed how I just don't feel the same as I used to. My muscles and joints are sore. I just feel old.
Lyme has hardened me. I sometimes think I feel less emotion than I should.....maybe because Lyme disease was the most harrowing emotional experience I have ever gone through and I'm just drained.
Lyme has softened me. I understand and empathize with others who have a chronic illness and I understand that the way they look doesn't always match how they feel.
Lyme has made me bolder. Creating a blog, writing to my government representatives, doing a guest spot on a radio program.....these are things I wouldn't have done before.
Lyme has made me frustrated. The lack of knowledge in the medical community about this illness, the conflicts of interest, the in-fighting, the roadblocks, and the fact that I have to travel 3 hours away to see a doctor......these things are just so unbelievable.
Lyme has made me into a helper, a resource for others. And boy does that feel good! I'm so humbled to be able to share my experience and help others who need information. I'm just paying it forward!
All events in our lives, good and bad, shape our character in one way or another.
Again I ask, how has Lyme changed you?
Check out this video to see the effect of Lyme on this woman's life.
Lyme has made me acutely aware of my mortality. I truly thought I was dying and may very well have if I had not found a Lyme-literate physician.
Lyme has brought me closer to God. He is ultimately in control of my life and I am so OK with that. He is my comfort and my hope.
Lyme has made me less carefree about life. I'm not always sure how I will feel from day to day or sometimes hour to hour.
Lyme has made me grateful. I can still hold down a job, and be a wife and mother. I have supportive friends and a loving family. And my health has improved immensely in the past two years. I have lots to be thankful for.
Lyme has made me more aware of my limitations. Out for a walk last night, I noticed how I just don't feel the same as I used to. My muscles and joints are sore. I just feel old.
Lyme has hardened me. I sometimes think I feel less emotion than I should.....maybe because Lyme disease was the most harrowing emotional experience I have ever gone through and I'm just drained.
Lyme has softened me. I understand and empathize with others who have a chronic illness and I understand that the way they look doesn't always match how they feel.
Lyme has made me bolder. Creating a blog, writing to my government representatives, doing a guest spot on a radio program.....these are things I wouldn't have done before.
Lyme has made me frustrated. The lack of knowledge in the medical community about this illness, the conflicts of interest, the in-fighting, the roadblocks, and the fact that I have to travel 3 hours away to see a doctor......these things are just so unbelievable.
Lyme has made me into a helper, a resource for others. And boy does that feel good! I'm so humbled to be able to share my experience and help others who need information. I'm just paying it forward!
All events in our lives, good and bad, shape our character in one way or another.
Again I ask, how has Lyme changed you?
Check out this video to see the effect of Lyme on this woman's life.
The Evolution of an Angler
Tuesday, April 23, 2013
Update on my biofilm treatment
Hello to my fellow Lyme sufferers......uh, let me rephrase that......my fellow Lyme survivors! Ya, that's much better. (You know, the glass half-full thing, rather than half-empty.)
I thought I'd bring you up to date on this latest phase of my treatment. As you may remember, I relapsed in January after being off antibiotics for 7 weeks. So here I am, back ON the antibiotics, but I've added some biofilm busters - the herbals Banderol and Samento.
I've been working my way up to the full dose of these. It sure takes a long time when you start with 5 drops and only add 1 drop every 2 days until you finally get to 20. I'm almost there.....today I did 19 drops of each (2 times).
So how has it been?
Well to be honest, I haven't felt this crummy in a long time! I'm very tired on this regimen. I seem to get a lot of headaches, and once in a while, that Lyme brain fog rolls in. The other night, I had a hard time sleeping. I woke up every two hours with a splitting headache. When I tried to nap the following day, I got those brain vibrations/tremors as I was drifting off to sleep, and it kept waking me up. Strange, I know. But many of you will understand what I'm talking about. So many Lyme patients talk about body vibrations. It feels like you're sticking your finger in an electrical outlet!
So what does this all tell me? Well, maybe I'm herxing. Or maybe I have yeast overgrowth which is triggering cytokine production, causing symptoms similar to Lyme. It's hard to say. I've made an appointment with my naturopath so that I can tackle the yeast problem if that's what she thinks I have.
If I'm herxing, then that's great! The dormant Lyme is coming out of hiding, and biofilms are being broken down, and more of the bacteria are being killed off. And that's the whole point of being on the Banderol and Samento. So I'm not going to complain. I just hope that things settle down after doing a few months of this treatment. I'm even considering staying on a preventative dose of Banderol and Samento when I'm done, just to police the remaining critters.
If there is anyone out there who may be reading this who has actually achieved remission, I'd love to hear from you! How long have you been in remission? What are you doing to build up your immune system? Are you taking any special supplements?
Before I sign off, I'd like to refer you to a wonderful blog entry I read this week from the blog Infectiously Optimistic. To find the goodness in chronic illness is such a blessing. I thank the author for her uplifting perspective.
I thought I'd bring you up to date on this latest phase of my treatment. As you may remember, I relapsed in January after being off antibiotics for 7 weeks. So here I am, back ON the antibiotics, but I've added some biofilm busters - the herbals Banderol and Samento.
I've been working my way up to the full dose of these. It sure takes a long time when you start with 5 drops and only add 1 drop every 2 days until you finally get to 20. I'm almost there.....today I did 19 drops of each (2 times).
So how has it been?
Well to be honest, I haven't felt this crummy in a long time! I'm very tired on this regimen. I seem to get a lot of headaches, and once in a while, that Lyme brain fog rolls in. The other night, I had a hard time sleeping. I woke up every two hours with a splitting headache. When I tried to nap the following day, I got those brain vibrations/tremors as I was drifting off to sleep, and it kept waking me up. Strange, I know. But many of you will understand what I'm talking about. So many Lyme patients talk about body vibrations. It feels like you're sticking your finger in an electrical outlet!
So what does this all tell me? Well, maybe I'm herxing. Or maybe I have yeast overgrowth which is triggering cytokine production, causing symptoms similar to Lyme. It's hard to say. I've made an appointment with my naturopath so that I can tackle the yeast problem if that's what she thinks I have.
If I'm herxing, then that's great! The dormant Lyme is coming out of hiding, and biofilms are being broken down, and more of the bacteria are being killed off. And that's the whole point of being on the Banderol and Samento. So I'm not going to complain. I just hope that things settle down after doing a few months of this treatment. I'm even considering staying on a preventative dose of Banderol and Samento when I'm done, just to police the remaining critters.
If there is anyone out there who may be reading this who has actually achieved remission, I'd love to hear from you! How long have you been in remission? What are you doing to build up your immune system? Are you taking any special supplements?
Before I sign off, I'd like to refer you to a wonderful blog entry I read this week from the blog Infectiously Optimistic. To find the goodness in chronic illness is such a blessing. I thank the author for her uplifting perspective.
Wednesday, April 10, 2013
Yolanda Foster.....inspiring
Well you learn something new every day! I discovered this video today on one of the Lyme sites that I've "liked" on Facebook. It's of Yolanda Foster giving a very emotional and inspiring speech at the Lyme Research Alliance Gala recently.
Perhaps you've heard.....Yolanda has Lyme disease. I had never heard of her before as I have never watched the reality TV show she is involved in, The Real Housewives of Beverley Hills. But I have just discovered who she is married to! David Foster! Yup.....our own Canadian music man.
Yolanda's speech brought tears to my eyes. (And I'm not typically a crier!) But it really hit close to home. As I listened to her experience, it brought back the memories of when I fell ill. My story was so similar to hers......the fatigue, the brain fog, the clueless doctors.
If you have Lyme disease, you will really empathize with Yolanda. If you don't have Lyme, what I hope you will take away from her speech is the seriousness of this illness and the need to protect yourself from tick bites (and mosquitoes and black flies).
Lyme is everywhere. It discriminates not. No one is immune.
Perhaps you've heard.....Yolanda has Lyme disease. I had never heard of her before as I have never watched the reality TV show she is involved in, The Real Housewives of Beverley Hills. But I have just discovered who she is married to! David Foster! Yup.....our own Canadian music man.
Yolanda's speech brought tears to my eyes. (And I'm not typically a crier!) But it really hit close to home. As I listened to her experience, it brought back the memories of when I fell ill. My story was so similar to hers......the fatigue, the brain fog, the clueless doctors.
If you have Lyme disease, you will really empathize with Yolanda. If you don't have Lyme, what I hope you will take away from her speech is the seriousness of this illness and the need to protect yourself from tick bites (and mosquitoes and black flies).
Lyme is everywhere. It discriminates not. No one is immune.
Wednesday, March 27, 2013
I never wanted to be a detective
One of the worst parts of Lyme is how it is all such trial and error, and there is so much "unknown" with this illness. And it's unpredictable. Even though I'm feeling pretty good on my meds these days, there are days when I'm "off", or when a weird symptom appears. Last night, I got a bad case of diarrhea after dinner - 3 episodes over an hour or so.
I tried to analyse the situation:
Is this from the Zithromax? It can cause diarrhea, but usually I'm fine on it.
Or maybe it's a side-effect of the Banderol and Samento. I've never taken them before now, so I have no idea what side-effects they will produce in me.
A herx! Yes, it could just be a herx! But I've never had diarrhea from a herx before. Hmmm.
Maybe this is because I started eating well today, and my body is reacting to the lack of carbs and screaming out for sugar!
Or do you think it's yeast? Yikes. I really don't want to deal with candida right now.
Could this just be an intestinal virus? (Hmmm....Not likely....I think I can tell the difference.)
Or worse yet......could this be c. difficile? Ohhhhhh nooooooo! You could get really, really sick with that. Great!
And which is the correct answer? I have no idea.
But I do know that I hate being my own detective. What I really want and need is to have my local health care system taking care of me, answering my questions, and doing the detective work.
I guess all I can do is wait it out and see. I don't think I'll even bother notifying my LLMD. I know what he'll say anyway - stop all meds until it clears up. So, that's what I'm going to do for now.
I'll let you know how it goes.
Monday, January 28, 2013
Disappointment on the ice
I'm so frustrated by what Lyme disease has done to my poor body, even though I've practically recovered from the illness. Yes, I'm dealing with a small relapse at the moment, but I'm not really talking about that. I'm talking about the residual effect Lyme has had on my body. I'm definitely not the same woman I used to be, health-wise. I remember reading a couple of years ago a quote from someone who said, "Once you have Lyme, you never feel the same again." That seems to be true, even if you've finished treatment and gone into remission.
First, there are my aching muscles and joints. Not really a Lyme arthritis. Just achiness. When I get out of bed in the morning, I feel like an 80 year old! My feet really hurt, and I hobble to the bathroom.
Second, there is the tiredness. It comes and goes during the day. Sometimes I think I feel 100%, and then 30 minutes later, I feel like I need to lay down and rest for a bit. It's a weird kind of fatigue. It's certainly NOT the crippling fatigue I had during the height of my illness, when I could barely wash and dry my hair. But it's a "come and go" kind of thing. I just never feel energized for an entire day.
Then, there's the weight gain. Oh my! I've never weighed so much in my life....not even when I was pregnant! It's funny how some people lose weight like crazy with Lyme disease, and others gain. I know that the meds I was on didn't help - sleep meds, an SSRI, in addition to my many antibiotics. The SSRIs, which are an anti-depressant, are notorious for packing on the pounds.
I guess I'm a little ticked off at how Lyme has messed things up in my life, even though I'm supposedly all better now. Yesterday, for example, I decided to go to the skating rink for some exercise and to try out my new skates. I decided to invest a little more in this pair of skates, as I had my last ones, so I went to a skating apparel store where they could heat up the skate and mould the boot to my foot. I just wanted a decent pair with good support, especially with the foot issues I've been having.
Now, although I love skating, I'm not a really good skater or anything! No spins or jumps here. I took some lessons as an adult 20 years ago, and became a lot more comfortable on the ice, learning some basics like how to stop, cross over, skate backwards, etc. Really, I just love the feel of the experience. So off I went to the rink yesterday with my brand new skates, happier than a bird with a french fry!
Disaster! (Thank you, Lyme.)
After about 10 minutes on the ice, my feet started to ACHE with a pain I'd never felt. It wasn't from the skates; they are actually comfortable. It was from whatever is wrong with my feet now. The ache was so bad, I went over to the players box and sat down.....and almost wondered if I'd need to remove the skates and walk in my stocking feet across the ice to get off! It was THAT bad! Then, I did a little self-talk, and convinced myself to just get up and tough it out. Do a few more laps! Maybe your feet will get used to it. The skates are new. You're breaking them in. Don't be such a wimp! So back onto the ice I went for several more laps. But my poor feet just kept on hurting. I got off the ice after about 15 minutes total. What a disappointment.
So, what do I do about this? Go to my family doctor? Get referred to a foot doctor? Go to a physiotherapist? What?! In the end, will any of them really be able to help me? They all know nothing about Lyme disease!
That's such a huge problem with Lyme. We always have to come up with our own solutions and treatment options. There's no one around, locally, to guide me through this.
I guess I'll be talking to my LLMD about my poor feet. By the way, I have a phone consult with him on Thursday to discuss the future of my treatment with my relapse. We'll see what he says; I'll let you know.
Thursday, December 06, 2012
The Phases of Lyme
I finally started reading this book today. Although I knew it to be an excellent resource, I just couldn't find it in me to read it while I was really ill. I think, at the time, I just couldn't handle the information. I was too scared. But now that I've emerged from this illness, I think I can look at the topic more objectively.
Pamela Weintraub is a medical journalist who contracted Lyme disease in the early 1990s, along with her husband and two children. So far, I've only read the Foreward and Introduction, but one statement really rang true for me and so many others with Lyme:
"When the head of infectious disease at Northern Westchester Hospital put his imprimatur on the diagnosis, we had an explanation for Jason's illness and an inkling as to what might be wrong with the rest of us, at last.
Our nightmare had just begun." (p. 2)
Doesn't that sum it up?! "Our nightmare had just begun."
This got me thinking about the whole process you go through from first symptoms to cure/remission. In my opinion, Lyme sufferers go through 4 phases.
Phase 1 is when you are trying desperately to figure out what is wrong with you. The doctors can't find anything conclusive, you have testing done, and nothing jumps out at even the specialists. They might even tell you it's stress or anxiety! You fight back. You research things on your own. You come up with the possibility of Lyme disease, and you send your blood to Igenex. You discover that it IS Lyme! You are so relieved that you have figured this out, without even the help of the local medical community. Now, you can start treatment and get your life back!
Not so fast.
You enter Phase 2.....the real beginning of the nightmare! You search for a physician who will treat you. No doctor around will touch you with a ten-foot pole. They don't believe your Igenex results. You search for a Lyme-literate medical doctor. You contact Lyme groups for information. You finally find a doctor, but he is in another country! You get on a waiting list....and you wait, and wait, and wait....helpless at this point. And you wonder how you will manage to get to appointments when you're feeling so weak and horrible. Not to mention how you are going to pay for this treatment. It's all so mindboggling, as you try to figure this out in your Lyme-fogged brain.
But the story continues.....Phase 3. You get the logistics all ironed out, and you begin treatment. You're afraid because your doctor is so far away. What if you have side-effects from the medication? What do you do if you get worse? You experience your first herxheimer reaction and you get really scared. You read, and read, and read. Looking things up on the internet practically becomes an obsession. You search for websites and blogs. You connect with other Lyme sufferers who can encourage you. You have your ups and downs. But slowly, over time, you start to improve. You get a little better with each passing month. You gain more confidence in your LLMD (who family and friends, and certainly your GP may think is a quack), and you're so grateful to have found him.
And then comes the last phase.....Phase 4. You actually recover! You realize that you haven't herxed in a few months, and your symptoms have just faded away. You are sleeping so much better, and the pain is gone. It's a miracle! And now it's time to come off the medication. You can hardly believe that you made it through, but you did. And now you try to take the best care of yourself that you can, to keep your immune system strong so you don't relapse. You get back to your job, your friends, and your favourite activities. You begin to enjoy life again, and are forever thankful for everyone who helped you along the way, and for your LLMD.
After all you've been through, you are forever changed. You truly have a new perspective on life.
Wednesday, October 31, 2012
The cost of Lyme treatment
I've been wanting to post this for a while to give those of you who are just embarking on this journey some idea of what this is all going to cost you.
First of all, things may be different between the U.S. and Canada with regard to private insurance. I have read, for instance, that insurance companies in the U.S. will not pay for more than a month's worth of antibiotics because of the IDSA guidelines, but I have not found that to be the case with my insurance company in Canada.
Here is a breakdown of what you can expect.
Please note: These are the prices I paid in 2011. I know for a fact that some fees have gone up since then, especially for the LLMDs.
1. IGeneX tests - This will be one of your first expenses, perhaps before you even see a Lyme-literate medical doctor (LLMD). The tests will cost you anywhere from $200 - $1200 depending on what tests you order. The most important test for you to get is the Western Blot (both the IgM and IgG). These 2 tests will cost about $100 each. I chose to do the basic Lyme panel, all the co-infections, and the CD57 test, so my cost was around $1200. But don't feel that you have to do all of that! Some LLMDs don't even recommend spending the money on the co-infection panel because there are so many strains of these infections, but the tests only cover one or two strains. In all likelihood, the test will come back with a negative result for co-infections even if you are infected. Let your LLMD give you a clinical diagnosis for those. Sending your blood samples to California via FedEx will cost around $75. (See my IGeneX Lab tab for detailed instructions about sending your blood to this lab.)
Massage therapy - I never did this, but it is helpful for many people.
I know that when you start to add this all up, you might wonder how on Earth you will manage this. Take it one step at a time. Start with the IGeneX test and the diagnosis by an LLMD. You're looking at about $800 to get these 2 things done. Then, go from there and try to figure out how you might fit the treatment into your budget. You may need to cut some things out of that budget for a while: no new clothes, no vacations, no entertainment, no meals out, etc. You may be surprised at ways you can cut back to come up with the funds.
This is an investment in your future.
P.S. We're currently trying to have my Lyme expenses recognized by the Canada Revenue Agency for a medical deduction on our income tax. All of our receipts have been submitted, and now we're waiting. If we succeed, I will consider this a small victory for Lyme sufferers. Stay tuned....
(Update: Check out this post to find out what happened with the Canada Revenue Agency. Good news!)
First of all, things may be different between the U.S. and Canada with regard to private insurance. I have read, for instance, that insurance companies in the U.S. will not pay for more than a month's worth of antibiotics because of the IDSA guidelines, but I have not found that to be the case with my insurance company in Canada.
Here is a breakdown of what you can expect.
Please note: These are the prices I paid in 2011. I know for a fact that some fees have gone up since then, especially for the LLMDs.
1. IGeneX tests - This will be one of your first expenses, perhaps before you even see a Lyme-literate medical doctor (LLMD). The tests will cost you anywhere from $200 - $1200 depending on what tests you order. The most important test for you to get is the Western Blot (both the IgM and IgG). These 2 tests will cost about $100 each. I chose to do the basic Lyme panel, all the co-infections, and the CD57 test, so my cost was around $1200. But don't feel that you have to do all of that! Some LLMDs don't even recommend spending the money on the co-infection panel because there are so many strains of these infections, but the tests only cover one or two strains. In all likelihood, the test will come back with a negative result for co-infections even if you are infected. Let your LLMD give you a clinical diagnosis for those. Sending your blood samples to California via FedEx will cost around $75. (See my IGeneX Lab tab for detailed instructions about sending your blood to this lab.)
2. The initial consult with your Lyme-literate MD - This will cost you anywhere from $400 to $800. The New York LLMDs are more expensive for whatever reason. The NY LLMD that I saw charged $600 for the initial consult, whereas the Michigan LLMD that I go to charged $400.
3. Regular appointments with your LLMD - In my personal experience, regular follow-up appointments have been anywhere from $125 - $225 depending on how much time you spend with the physician. However, the fees will vary from doctor to doctor. Recently, someone told me that a doctor in Seattle charges $400 an hour! So, do your research. Some doctors will charge for e-mails, so keep that in mind. At the start of your treatment, you are bound to have some questions, and e-mails will be inevitable. Another thing to check out is how often your physician will need to see you. Mine wanted to see me in person every 6 weeks. Others require a visit in person every 6 months with a phone consult at the 3 month mark.
4. Travel expenses - Hotel, gas, meals. Don't forget to factor these things in.
5. Medications - Medications could cost up to $300 per month or more, depending on the medication. Some antibiotics are cheap because they have been around forever. Others are much more expensive. The treatment for babesia, a co-infection of Lyme, is quite expensive. Thankfully, my private insurance covered my meds right from the start. I still consider that a miracle and I'm so grateful.
6. Supplements - They probably cost
me about $100 - $200 per month. Some supplements are cheap, while others (e.g. good probiotics, alpha lipoic acid, Omega 3) can be quite expensive. Shop around. With some vitamins, your basic drug store variety is fine, but with other supplements, you will want to pay for a better quality pharmaceutical grade supplement. You'll need to research this and ask your doctor about it.
7. Other "paramedical" appointments:
Naturopath – Insurance covers
some, so I pay $35 every month or two.
Counselling - After insurance coverage, it cost $90 - $180 every month depending on how often I went. Very expensive, but very necessary! Find a counsellor who BELIEVES you regarding your Lyme diagnosis, and who will teach you how to deal with everything emotionally.Massage therapy - I never did this, but it is helpful for many people.
If you need to go a step further, you may want to consider finding a way to borrow about $10 000 - $15 000 which would hopefully cover your entire treatment (provided that your meds are paid for by insurance). Could you borrow from your line of credit? Would it be possible to sell one of your cars? These are just thoughts. I don't want to presume to know and understand anyone's personal financial situation.
But all this to say.....it WILL require some sacrifices! But it's for your health, and without that, you have very little. This is a situation that will hopefully end at a certain point in time. For me, it will have been a year and a half of financial pressure by the time I'm done treatment, but at least I'm now back to work and able to make a living and contribute to the family finances once again.
Tuesday, October 09, 2012
A medical WOOT!
OK, I will embarrassingly admit it. I actually had to look up the meaning of 'woot'! Forgive me. I'm middle-aged! I'm a blogger, not a texter, so much of this lingo is lost on me. But I'm learning. So, here is the definition of 'woot':
w00t
From Wikipedia, the free encyclopedia
The term w00t is a slang interjection used to express happiness or excitement, usually over the Internet. The expression is most popular on forums, USENET posts, multiplayer computer games (especially first person shooters), IRC chats, and instant messages, though use on the World Wide Web is by no means uncommon.
So there you have it.....in case you, too, were wondering. And what, you might ask, does this have to do with Lyme Disease?
Well.....I got great news from my LLMD (Lyme-literate medical doctor) yesterday. Woot, woot! Because I've been feeling good for a couple of months, with no herxheimer reactions, he is going to start to taper my meds. I should be off antibiotics by the end of the year. Such fantastic news!
This news does bring with it a bit of worry, though, as I do have a natural concern about whether I will eventually relapse. For now, I must try not to let my thoughts go there. I need to remind myself that many people are treated successfully and do go into remission. I need to keep my thoughts positive, because the thought of returning to that horrible, dark place of a year and a half ago, is nothing short of frightening. And I just don't want to live in fear.
So for now, I'm going to enjoy this good news, and try very hard to keep my mind filled with good thoughts.
Woot!
Monday, September 24, 2012
Learning to live with the opposition
It's hard to be wrong. But it's harder to be right, and have people think you're wrong. It's frustrating, it's isolating, it's demeaning, it's (add the adjective that applies to you). For almost 2 years now, I've had to deal with the naysayers in my life.
I experienced another situation today in which a medical professional expressed her doubt about Lyme disease....not directly, but through other circumstances. I can't go into the details right now; perhaps I will be able to later, as it really is a situation that I'd like to write about.
I left that appointment frustrated on a number of levels:
1) Why will medical professionals not read up on this issue and learn about the controversy? There is a controversy for a reason! Watch Under Our Skin. Learn about why Elizabeth May has introduced a National Lyme Bill. Consider the fact that in Canada, Lyme is supposed to be a clinical diagnosis. (Though this is never practised.) Develop a curiosity about why there are very few cases of Lyme Disease reported in Canada compared to the U.S. Do you think ticks stop at the border? Well, of course not! Research and discover for yourself that we have inadequate lab tests here, and inadequate teaching about this illness among doctors.
2) Am I not living proof that the long-term antibiotic treatment prescribed by my U.S. Lyme doctor actually works? Why do you still not believe? I was SO sick, and now I'm well! Do you think this is all a coincidence? Are you so deeply entrenched in your faulty beliefs that you are blind to the clinical evidence before your eyes?
3) I think that she must believe that since my anxiety has cleared up, that is why the physical symptoms have gone away. Wrong. Wrong. Wrong. The antibiotics cleared the infection, and my brain chemicals returned to normal. My physical symptoms were not caused by anxiety. Again, read up on neuropsychiatric Lyme. The information is accessible to all.
As I contemplated my appointment and how deflated I felt afterward, I had to turn my thoughts to the people who HAVE been a support to me. I thought about the online Lyme community that I have become acquainted with. There are so many people going through the same thing. We are in this together, and we are a great support to one another. I thought about the two Lyme-literate doctors in the U.S. who diagnosed me with Lyme. These LLMDs as we call them, go out on a limb for us every day. They do what they do despite what other doctors think......and we all know what most other doctors think! I thought about Elizabeth May, battling for us in Parliament to get her bill for a National Lyme Strategy passed. I thought about Jim Wilson, founder of CanLyme (The Canadian Lyme Disease Foundation) who suffered from Lyme himself, and now provides an invaluable resource for Canadians with Lyme. (See the CanLyme website.) I thought about my colleagues who have signed the petition I have posted at work. I thought about my husband, some family, and friends who stuck by me and supported me throughout my illness. I thought about a certain psychologist and a Christian counsellor who both supported me throughout this ordeal and believed that my illness was physical in nature. I thought about God, who never left me, not for a moment, during those months of agony. He gave me the strength to persevere and ultimately healed me through the knowledgeable physicians he led me to.
I did a lot of 'thinking' this afternoon, and it has helped.
Lyme patients need to develop a thick skin because there will be plenty of opposition along the way. Keep looking straight ahead and forge on! Find that support network and draw them close. Learn to let the negative comments roll off you.
You know you're right, and one day you will be vindicated.
I experienced another situation today in which a medical professional expressed her doubt about Lyme disease....not directly, but through other circumstances. I can't go into the details right now; perhaps I will be able to later, as it really is a situation that I'd like to write about.
I left that appointment frustrated on a number of levels:
1) Why will medical professionals not read up on this issue and learn about the controversy? There is a controversy for a reason! Watch Under Our Skin. Learn about why Elizabeth May has introduced a National Lyme Bill. Consider the fact that in Canada, Lyme is supposed to be a clinical diagnosis. (Though this is never practised.) Develop a curiosity about why there are very few cases of Lyme Disease reported in Canada compared to the U.S. Do you think ticks stop at the border? Well, of course not! Research and discover for yourself that we have inadequate lab tests here, and inadequate teaching about this illness among doctors.
2) Am I not living proof that the long-term antibiotic treatment prescribed by my U.S. Lyme doctor actually works? Why do you still not believe? I was SO sick, and now I'm well! Do you think this is all a coincidence? Are you so deeply entrenched in your faulty beliefs that you are blind to the clinical evidence before your eyes?
3) I think that she must believe that since my anxiety has cleared up, that is why the physical symptoms have gone away. Wrong. Wrong. Wrong. The antibiotics cleared the infection, and my brain chemicals returned to normal. My physical symptoms were not caused by anxiety. Again, read up on neuropsychiatric Lyme. The information is accessible to all.
As I contemplated my appointment and how deflated I felt afterward, I had to turn my thoughts to the people who HAVE been a support to me. I thought about the online Lyme community that I have become acquainted with. There are so many people going through the same thing. We are in this together, and we are a great support to one another. I thought about the two Lyme-literate doctors in the U.S. who diagnosed me with Lyme. These LLMDs as we call them, go out on a limb for us every day. They do what they do despite what other doctors think......and we all know what most other doctors think! I thought about Elizabeth May, battling for us in Parliament to get her bill for a National Lyme Strategy passed. I thought about Jim Wilson, founder of CanLyme (The Canadian Lyme Disease Foundation) who suffered from Lyme himself, and now provides an invaluable resource for Canadians with Lyme. (See the CanLyme website.) I thought about my colleagues who have signed the petition I have posted at work. I thought about my husband, some family, and friends who stuck by me and supported me throughout my illness. I thought about a certain psychologist and a Christian counsellor who both supported me throughout this ordeal and believed that my illness was physical in nature. I thought about God, who never left me, not for a moment, during those months of agony. He gave me the strength to persevere and ultimately healed me through the knowledgeable physicians he led me to.
I did a lot of 'thinking' this afternoon, and it has helped.
Lyme patients need to develop a thick skin because there will be plenty of opposition along the way. Keep looking straight ahead and forge on! Find that support network and draw them close. Learn to let the negative comments roll off you.
You know you're right, and one day you will be vindicated.
Friday, September 21, 2012
All we need is hope
It is amazing to see what hope can do for our soul! Lymies need hope and need to hear success stories to help them persevere through the rough times. I think it's a fantastic idea that my friend and fellow Lyme blogger from Lymed out has decided to include a 'Success Stories' tab on her blog. I was honoured to be the first one interviewed for this, and I hope to see dozens more send in their success stories. We need to hear them, especially when there is so much negativity surrounding this illness, such as:
- Disbelief from our doctors
- Suspicion of U.S. Lyme labs
- Lack of support from family members who do not understand the issue and who have not walked in our shoes
- Fearmongering about long-term antibiotics
- Denial of insurance because your illness is not recognized
And the list goes on.
Be careful what you search for on the internet. You will find a lot of negative things there. Search for the stories with the happy endings, and believe that that could be YOU!
One of the first stories that gave me hope was the story of Michelle Backes who made a YouTube video about her struggle with and recovery from Lyme disease. It really helped me to carry on and understand that there was a real possibility that I could recover! You can watch it below.
Thank you, Michelle.
- Disbelief from our doctors
- Suspicion of U.S. Lyme labs
- Lack of support from family members who do not understand the issue and who have not walked in our shoes
- Fearmongering about long-term antibiotics
- Denial of insurance because your illness is not recognized
And the list goes on.
Be careful what you search for on the internet. You will find a lot of negative things there. Search for the stories with the happy endings, and believe that that could be YOU!
One of the first stories that gave me hope was the story of Michelle Backes who made a YouTube video about her struggle with and recovery from Lyme disease. It really helped me to carry on and understand that there was a real possibility that I could recover! You can watch it below.
Thank you, Michelle.
Part 1
Part 2
Friday, September 14, 2012
Tuesday, September 11, 2012
Dear doctor
Here are letters I'd love to send to some of the doctors I saw in 2011. Of course, I never will. But writing them was cathartic, and a reminder of what I was up against in getting proper treatment for Lyme disease.
Dear Emergency Room Doctor #2,
I'm sure you don't remember me. I was an ER patient in February of 2011.
The night I came with my husband to the ER was one of the worst nights of my life. I hadn't slept in about 3 weeks due to insomnia, and had horrible vibrations in my legs and worst of all, head. I had so many awful symptoms. My husband helped me limp out of my house, drove me to the ER, and stayed with me for who knows how many hours before I was finally ushered into an 'pod'.
You listened to me, but couldn't piece together all of my symptoms. You did arrange for an immediate CT scan, though, which revealed nothing abnormal. Your resident gave me a neurological exam. You then pulled my husband aside and asked him if I was doing illegal drugs. He told you NO because, of course, I was NOT!!! Why did you feel the need, just a short time later, to ask him this same question again? Why did you not believe his answer? Did my symptoms appear to you to be some kind of drug withdrawal symptom? Was I acting like a drug addict?
You finally decided to put a referral in to Urgent Neuro, but unfortunately I got a call from that department a few days later to say that I did not qualify.
I left the ER with no answers, and two prescriptions: Ativan and Imovane. I was to take them together to help me fall asleep.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Emergency Room Doctor #3
I'm sure you don't remember me. I was an ER patient in March of 2011.
My husband drove me to the ER because I was so physically ill and overcome with anxiety. Feelings of dread were just washing over me, and I couldn't control it. I knew I needed help.
My body was literally shaking as I lay on the examining table. I just couldn't control the shaking or my emotions.
I talked to you about my suspicion of Lyme disease, and you truly convinced me that I needed to forget about this crazy idea and work on my anxiety, and that an SSRI would help me immensely.
You really were a very kind doctor, and I appreciated the time you took with me. You were calming, and really did have me convinced that this was all the result of the great stressors I had in my life.
I left with a sub-lingual Ativan and an encouragement to go back to my family doctor.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Doctor of Psychiatry,
Perhaps you remember me, who knows? I was a patient of yours in the spring of 2011.
I came to you because of the great anxiety I had, because of stressors I had in my life, and because of the inability of doctors to figure out what was causing my horrendous physical symptoms.
You listened, and then explained to me that I had a 'tired nervous system' from all of the stress I had been under in the previous several years, caring for a husband who was seriously ill. How my tender glands and low-grade fevers factor into this, I do not know.
I talked to you about my fears, and my belief that I had Lyme disease. You listened, but refused to consider it.
When I finally received the positive blood test results, I was so elated to finally know what was wrong with me! I came to my appointment so excited to tell you that I had an answer!
But you didn't want to hear anything about it.
You cut me off. You scolded me. You told me that you did not need a lecture on Lyme disease. You told me to stop treating your office like a medical clinic. You told me that I must stop talking about Lyme disease in the appointments, and not to come back to see you unless I was willing to work on other areas of my life.
What was the problem exactly? Was it your pride that refused to believe that you were wrong in your 'diagnosis' of me? Were you insulted that I challenged your diagnosis? It was never my intention to sound as though I was second-guessing what you were telling me. But I had to dig deeper because I just felt so physically ill. I was truly expecting you to be thrilled for me that I had a positive Lyme blood test. Instead, you reprimanded me. I will never forget how you treated me that day.
That was obviously the end of our doctor-patient relationship.
I just want you to know that I have been on antibiotic treatment for 15 months now, and I'm feeling really good. One by one, the symptoms started to fade away, and I have regained my strength. Had you known anything about neuro-psychiatric Lyme disease, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Neurologist #1,
I'm sure you don't remember me. I was your patient in January of 2011.
I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep. I also had vibrations in my legs.
You performed a very thorough examination on me, and couldn't find anything 'wrong'. You ruled out any debilitating neurological disease such as MS or ALS, but you could not offer any reason for my symptoms.
Out of desperation, I came back to you two months later to ask if there was anyone you could refer me to. Maybe you could think of a colleague somewhere who might have some particular expertise, and who could help to diagnose me. Your answer was 'no'. You explained that sometimes we just don't know why these things happen, and there just aren't any other tests to run on me.
I showed you my positive Igenex test results, and you were very skeptical. You glanced at them, and told me that you would consider it a 'negative' result. Why would you say it was negative, when Igenex called it positive? I have several positive bands on the Western blot. Do you have any expertise in reading Lyme Western blots?
I never saw you again. What more could you do for me?
I just want you to know that I finally did receive a diagnosis of Lyme disease from a physician in the U.S. I know that doctors in Canada have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. I have been on antibiotics for 15 months, and almost all of my neurological symptoms have disappeared. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely yours,
Paula
Dear Neurologist #2
I'm sure you don't remember me. I had an appointment with you in March of 2011.
I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep. I also had vibrations in my legs.
You performed a neurological exam on me, and looked at my MRI. You couldn't find any reason for the symptoms I was suffering from. But you said I looked 'anxious'. True enough. But anxiety was NOT the cause of my symptoms.
When I asked if you could refer me to an infectious disease specialist, you said there was no reason for that, as I didn't have a high fever.
When I asked if this could be the result of Lyme disease, you quickly dismissed that idea. "No, Lyme disease wouldn't cause this."
Well, in fact, it can. Hundreds, or perhaps thousands, of people have reported symptoms just like mine, and they have tested positive for Lyme disease.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely,
Paula
Dear Endocrinologist,
I'm sure you don't remember me. I came to see you in March of 2011.
I was referred to you because I was having strange vibrations in my head and body, and the head vibrations prevented me from falling asleep.
You were very kind, and you spent a lot of time with me. You said that there was nothing endocrine-related that would cause symptoms like this. But you told me to keep searching and to leave no stone unturned. And that is what I did. Thank you for that advice.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely yours,
Paula
Dear Infectious Disease Specialist,
I'm sure you don't remember me. I had an appointment with you in May of 2011.
I was referred to you because I had a whole host of strange symptoms which I presented to you in a typed document. I had also received a positive Lyme blood test from Igenex. I was so hopeful that I would find some answers at this appointment and finally receive treatment.
You spent a lot of time with me, listened patiently, and spoke thoughtfully. However, you did not believe I had Lyme disease despite my positive blood test. You felt that it was improbable, and said that our medical system works on probability. You believed that it was more likely that my symptoms were caused by anxiety. I'm still not sure how tender glands and low-grade fevers factor into anxiety. I'm also concerned about the 'probability factor' in diagnosing someone. This would overlook quite a number of people who have rare conditions, would it not? I'd rather be treated as an individual, not a statistic.
I told you about my risk of exposure, that I had been walking through the woods of a certain provincial park where we had actually received literature on the way in regarding ticks and Lyme disease. Your response was, "So? I have a cottage next to that park." Am I correct in my understanding that since you have never come into contact with ticks at your cottage, it therefore means that I could not have come into contact with any at the adjacent park? I'm not following the logic.
You are very skeptical of U.S. for-profit labs, believing them to be some kind of scam. You said that they make their tests more sensitive. Isn't sensitive actually better? Have you researched this lab? Do you know their track record? Do you know the results of government inspections on the lab? If you looked into it, I'm sure you would be satisfied with their reputation.
I had several positive bands on my Western Blot, and one particular band (31) which is highly specific for the Borrelia bacteria, had a triple positive reaction (+++). Surely you know that bands 31 and 34 were removed from other standard Western Blots because the Lyme vaccine was based on them. And here I was, with a triple positive for band 31 - a very strong reaction. And I've never had a Lyme vaccine. But you just ignored all of this valuable information.
You were prepared, however, to offer me a 3-week prescription for doxycycline to 'ease my mind'. I thank you for that, truly! Not that 3 weeks would have cured my illness, but it confirmed my self-diagnosis when I had a herxheimer reaction on day 3 of the treatment. The herx lasted for 6 days. It was another piece of evidence to present to the two U.S. Lyme-literate doctors I saw a month later. So thank you.
You were really very kind to me, but still, I have to hold you to a higher level of accountability because this is your specialty, after all. And yet I was left to suffer.
I just want you to know that I began treatment for Lyme disease in June 2011, and continue on antibiotic therapy 15 months later. Almost all of my symptoms have disappeared. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms and a positive Igenex blood test.
Sincerely yours,
Paula
Dear Emergency Room Doctor #2,
I'm sure you don't remember me. I was an ER patient in February of 2011.
The night I came with my husband to the ER was one of the worst nights of my life. I hadn't slept in about 3 weeks due to insomnia, and had horrible vibrations in my legs and worst of all, head. I had so many awful symptoms. My husband helped me limp out of my house, drove me to the ER, and stayed with me for who knows how many hours before I was finally ushered into an 'pod'.
You listened to me, but couldn't piece together all of my symptoms. You did arrange for an immediate CT scan, though, which revealed nothing abnormal. Your resident gave me a neurological exam. You then pulled my husband aside and asked him if I was doing illegal drugs. He told you NO because, of course, I was NOT!!! Why did you feel the need, just a short time later, to ask him this same question again? Why did you not believe his answer? Did my symptoms appear to you to be some kind of drug withdrawal symptom? Was I acting like a drug addict?
You finally decided to put a referral in to Urgent Neuro, but unfortunately I got a call from that department a few days later to say that I did not qualify.
I left the ER with no answers, and two prescriptions: Ativan and Imovane. I was to take them together to help me fall asleep.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Emergency Room Doctor #3
I'm sure you don't remember me. I was an ER patient in March of 2011.
My husband drove me to the ER because I was so physically ill and overcome with anxiety. Feelings of dread were just washing over me, and I couldn't control it. I knew I needed help.
My body was literally shaking as I lay on the examining table. I just couldn't control the shaking or my emotions.
I talked to you about my suspicion of Lyme disease, and you truly convinced me that I needed to forget about this crazy idea and work on my anxiety, and that an SSRI would help me immensely.
You really were a very kind doctor, and I appreciated the time you took with me. You were calming, and really did have me convinced that this was all the result of the great stressors I had in my life.
I left with a sub-lingual Ativan and an encouragement to go back to my family doctor.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Doctor of Psychiatry,
Perhaps you remember me, who knows? I was a patient of yours in the spring of 2011.
I came to you because of the great anxiety I had, because of stressors I had in my life, and because of the inability of doctors to figure out what was causing my horrendous physical symptoms.
You listened, and then explained to me that I had a 'tired nervous system' from all of the stress I had been under in the previous several years, caring for a husband who was seriously ill. How my tender glands and low-grade fevers factor into this, I do not know.
I talked to you about my fears, and my belief that I had Lyme disease. You listened, but refused to consider it.
When I finally received the positive blood test results, I was so elated to finally know what was wrong with me! I came to my appointment so excited to tell you that I had an answer!
But you didn't want to hear anything about it.
You cut me off. You scolded me. You told me that you did not need a lecture on Lyme disease. You told me to stop treating your office like a medical clinic. You told me that I must stop talking about Lyme disease in the appointments, and not to come back to see you unless I was willing to work on other areas of my life.
What was the problem exactly? Was it your pride that refused to believe that you were wrong in your 'diagnosis' of me? Were you insulted that I challenged your diagnosis? It was never my intention to sound as though I was second-guessing what you were telling me. But I had to dig deeper because I just felt so physically ill. I was truly expecting you to be thrilled for me that I had a positive Lyme blood test. Instead, you reprimanded me. I will never forget how you treated me that day.
That was obviously the end of our doctor-patient relationship.
I just want you to know that I have been on antibiotic treatment for 15 months now, and I'm feeling really good. One by one, the symptoms started to fade away, and I have regained my strength. Had you known anything about neuro-psychiatric Lyme disease, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Yours sincerely,
Paula
Dear Neurologist #1,
I'm sure you don't remember me. I was your patient in January of 2011.
I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep. I also had vibrations in my legs.
You performed a very thorough examination on me, and couldn't find anything 'wrong'. You ruled out any debilitating neurological disease such as MS or ALS, but you could not offer any reason for my symptoms.
Out of desperation, I came back to you two months later to ask if there was anyone you could refer me to. Maybe you could think of a colleague somewhere who might have some particular expertise, and who could help to diagnose me. Your answer was 'no'. You explained that sometimes we just don't know why these things happen, and there just aren't any other tests to run on me.
I showed you my positive Igenex test results, and you were very skeptical. You glanced at them, and told me that you would consider it a 'negative' result. Why would you say it was negative, when Igenex called it positive? I have several positive bands on the Western blot. Do you have any expertise in reading Lyme Western blots?
I never saw you again. What more could you do for me?
I just want you to know that I finally did receive a diagnosis of Lyme disease from a physician in the U.S. I know that doctors in Canada have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. I have been on antibiotics for 15 months, and almost all of my neurological symptoms have disappeared. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely yours,
Paula
Dear Neurologist #2
I'm sure you don't remember me. I had an appointment with you in March of 2011.
I was referred to you because I had all kinds of strange neurological symptoms, the worst of which was vibrations in my head which prevented me from falling asleep. I also had vibrations in my legs.
You performed a neurological exam on me, and looked at my MRI. You couldn't find any reason for the symptoms I was suffering from. But you said I looked 'anxious'. True enough. But anxiety was NOT the cause of my symptoms.
When I asked if you could refer me to an infectious disease specialist, you said there was no reason for that, as I didn't have a high fever.
When I asked if this could be the result of Lyme disease, you quickly dismissed that idea. "No, Lyme disease wouldn't cause this."
Well, in fact, it can. Hundreds, or perhaps thousands, of people have reported symptoms just like mine, and they have tested positive for Lyme disease.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely,
Paula
Dear Endocrinologist,
I'm sure you don't remember me. I came to see you in March of 2011.
I was referred to you because I was having strange vibrations in my head and body, and the head vibrations prevented me from falling asleep.
You were very kind, and you spent a lot of time with me. You said that there was nothing endocrine-related that would cause symptoms like this. But you told me to keep searching and to leave no stone unturned. And that is what I did. Thank you for that advice.
I just want you to know that I finally did receive a diagnosis and positive blood test for Lyme disease. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms.
Sincerely yours,
Paula
Dear Infectious Disease Specialist,
I'm sure you don't remember me. I had an appointment with you in May of 2011.
I was referred to you because I had a whole host of strange symptoms which I presented to you in a typed document. I had also received a positive Lyme blood test from Igenex. I was so hopeful that I would find some answers at this appointment and finally receive treatment.
You spent a lot of time with me, listened patiently, and spoke thoughtfully. However, you did not believe I had Lyme disease despite my positive blood test. You felt that it was improbable, and said that our medical system works on probability. You believed that it was more likely that my symptoms were caused by anxiety. I'm still not sure how tender glands and low-grade fevers factor into anxiety. I'm also concerned about the 'probability factor' in diagnosing someone. This would overlook quite a number of people who have rare conditions, would it not? I'd rather be treated as an individual, not a statistic.
I told you about my risk of exposure, that I had been walking through the woods of a certain provincial park where we had actually received literature on the way in regarding ticks and Lyme disease. Your response was, "So? I have a cottage next to that park." Am I correct in my understanding that since you have never come into contact with ticks at your cottage, it therefore means that I could not have come into contact with any at the adjacent park? I'm not following the logic.
You are very skeptical of U.S. for-profit labs, believing them to be some kind of scam. You said that they make their tests more sensitive. Isn't sensitive actually better? Have you researched this lab? Do you know their track record? Do you know the results of government inspections on the lab? If you looked into it, I'm sure you would be satisfied with their reputation.
I had several positive bands on my Western Blot, and one particular band (31) which is highly specific for the Borrelia bacteria, had a triple positive reaction (+++). Surely you know that bands 31 and 34 were removed from other standard Western Blots because the Lyme vaccine was based on them. And here I was, with a triple positive for band 31 - a very strong reaction. And I've never had a Lyme vaccine. But you just ignored all of this valuable information.
You were prepared, however, to offer me a 3-week prescription for doxycycline to 'ease my mind'. I thank you for that, truly! Not that 3 weeks would have cured my illness, but it confirmed my self-diagnosis when I had a herxheimer reaction on day 3 of the treatment. The herx lasted for 6 days. It was another piece of evidence to present to the two U.S. Lyme-literate doctors I saw a month later. So thank you.
You were really very kind to me, but still, I have to hold you to a higher level of accountability because this is your specialty, after all. And yet I was left to suffer.
I just want you to know that I began treatment for Lyme disease in June 2011, and continue on antibiotic therapy 15 months later. Almost all of my symptoms have disappeared. I know that doctors have very little knowledge of the symptoms of late-stage Lyme disease, but if you had known more, I might have been spared months of suffering. Perhaps this information will help others who come to you with unusual symptoms and a positive Igenex blood test.
Sincerely yours,
Paula
Thursday, September 06, 2012
One week down.....
Well, it was back to work this week. Back to my regular job as an elementary school teacher. And I have loved every minute of it!
I had no idea, until I became ill with Lyme disease and was forced to take over a year off work, just how satisfying and therapeutic it is to work. It's funny, because prior to my illness, I had been thinking about how wonderful retirement would be, and I secretly wished I would win a lottery or something and be able to quit this very busy and often stressful job and spend my days in leisurely activity or caring for my home.
I did experience a few months of that 'freedom' towards the end of my sick leave, when I was stronger and felt better. My kids are in school full-time, so I had a fair bit of time on my hands during the day. But to be honest, it wasn't what I imagined it would be. I really wasn't motivated to 'care for my home' like I thought I would. Laundry piled up, and I constantly felt 'behind' in everything. And that was very weird for me, who is usually extremely organized and on top of things.
One thing I learned about myself is that having an excess of time on my hands is actually a de-motivator. Because I knew I had lots of time in my day, I felt I could put off various household chores until later. My 'to do' list got quite long, and things just weren't getting crossed off. Then, I started to get stressed out about that, as well as my lack of motivation!
The solution to this was.......going back to work and getting busier! How ironic. Returning to my job has forced me to be up and dressed at the same time each day, keep up with the laundry and household chores, and plan my time well.
I also realized just how much I missed the adult, social interaction of work. I like my colleagues, and it was so nice this week to be in my old, familiar environment. I've spent the past 13 years at this school, so it's my home away from home.
I've also been so happy to meet my new students and have some fun with them this week as we get organized, get into our routines, and get to know one another. So far, the classes I teach have been lovely.
This is not to say that there won't be stressors along the way this year. Report card season comes to mind, when teachers work non-stop at home for a couple of weeks. Behaviour issues with a few students are bound to crop up, too. I'll have to find ways to de-stress. I know how important it is to keep the stress under control so that one's immune system doesn't weaken and give the Lyme a chance to gain a foothold.
Adequate sleep, regular exercise, and healthy eating will need to become priorities in my life to keep this illness in remission.
So all in all, this has been a good week.....a great beginning to a new chapter in my life.
I'm grateful for my job. Just one more lesson that Lyme has taught me.
Monday, August 27, 2012
Light at the End of the Tunnel
This is how I felt today as I finished up my appointment with my LLMD. Here I am, nearing the end of this long, dark tunnel called Lyme, ready to emerge into the beautiful light of day! The end of treatment is nearing. It's so close I can see it!
I've been feeling exceptionally well for the past month, with just minor, tolerable symptoms here and there. The fatigue has definitely improved, and I've been able to go about my day without too much difficulty. I'm headed back to work as a teacher in one week! That's exciting!
Here are some questions I asked my LLMD at this appointment, and these are the answers he gave me.
1. What if all of my symptoms don't ever go away completely? How will we determine the right time to end treatment?
Answer: It's sometimes hard to tell if certain remaining symptoms are caused by the Lyme or by the medications themselves. As long as I continue to improve, we want to continue to push the treatment. But if improvement stops, and I'm feeling quite well, then perhaps it's time to try to go off of the medications and see how I do.
2. When do you think I'll be done treatment?
Answer: He thinks I should probably be able to go off all medications around the new year. He doesn't like to stop antibiotics for teachers at the start of the school year (due to the stress of the situation.....and we all know that Lyme does not react well to stress.)
3. Can we begin to space out the appointments a bit more?
Answer: Yes, we are at a point where we can go a couple of months, and perhaps even phone consults as long as I'm feeling well day to day. (Wow....was I glad to hear that! It sure would be a great cost saving to have just a phone consult. No 3-hour drive to and from, no hotel expense, no restaurant meals. Sign me up!)
4. What do you think of the new blood test - the Borrelia culture by Advanced Labs?
Answer: The test is not perfected yet, and is expensive at $600. It's not worth it. (Nor does he feel that the CD57 is worth it, in his clinical experience. The CD57 numbers just don't always correlate to how a patient feels physically. He prefers to go by symptoms, and how you're feeling to determine end of treatment.)
5. When I finish up the antibiotics, could I go on herbal anti-microbials to help keep me in remission, such as Banderol and Samento?
Answer: Yes, those herbals help some people in the remission stage; they're not as good during the intensive treatment though. They can be purchased online and aren't too expensive.
6. Will we attack the cyst form of Borrelia again with Flagyl or grapefruit seed extract?
Answer: Since my liver enzymes were elevated on the Flagyl last time, we won't use that one again. I can do grapefruit seed extract, but we'll leave that for a while, since it can make some patients feel ill (....and I'm going back to work, so the timing isn't right.) With some patients, he never prescribes Flagyl at all, and they do just fine. (It depends on the person and their symptoms.)
Wow......it goes to show that there is no real recipe for treating Lyme disease. It's an art. LLMDs evaluate your symptoms carefully, and choose the antibiotics that they feel will best address your particular situation. Sometimes it's trial and error.
I'm grateful for my LLMD, for his experience and guidance. I'm grateful that I'm being cared for by someone who has treated over 3 000 Lyme patients!
Thank you so much, Dr. L, for caring for your patients, for going out on a limb for us, and for continuing to learn through your practice and conferences, in order to provide the best care for us.
You truly saved my life. May God bless you!
Saturday, August 18, 2012
Faces of Lyme
Thank you to these 4 women who participated in this short video interview by The Poughkeepsie Journal. I believe that it is our stories that are causing politicians and the public to sit up and take notice of this illness. And this is one of the reasons for my blog - to add my story to the thousands of other stories out there.
How can we continue to deny all of this clinical evidence for chronic Lyme disease? Well, the answer is, we can't. There are just too many people with the SAME story to ignore!
As I listen to these women, I feel like it is 'me' talking.
Faces of Lyme - If the video does not appear when you click on the link, you will see a search bar on the website. Just type in Faces of Lyme, and the video should appear in the group of recommended videos. Click on it from there.
*I seem to be having trouble accessing the video a second time from my computer. I think it may restrict multiple viewings because they want subscriptions. Please let me know if you are not able to access the video. I have had no trouble accessing it from Facebook. Go to the California Lyme Disease Association on FB, and find the status update there.
How can we continue to deny all of this clinical evidence for chronic Lyme disease? Well, the answer is, we can't. There are just too many people with the SAME story to ignore!
As I listen to these women, I feel like it is 'me' talking.
Faces of Lyme - If the video does not appear when you click on the link, you will see a search bar on the website. Just type in Faces of Lyme, and the video should appear in the group of recommended videos. Click on it from there.
*I seem to be having trouble accessing the video a second time from my computer. I think it may restrict multiple viewings because they want subscriptions. Please let me know if you are not able to access the video. I have had no trouble accessing it from Facebook. Go to the California Lyme Disease Association on FB, and find the status update there.
Monday, August 06, 2012
A story with a happy ending
One thing people love is stories, especially happy stories with happy endings. They lift us up and give us hope. And I'm not sure how many of us would be able to get up in the morning, and carry on, without some hope in our hearts.
The young woman in the photograph is doing a cartwheel—something she couldn’t do six years ago, when she was wheelchair-bound from Lyme disease. At that time, her body was wracked with pain, 24-7. She had a cascade of other symptoms as well, which made it impossible to go to school, to carry on with normal daily activities, and often, even to get out of bed. Life seemed bleak indeed.
Yet, out of her pain and misery, Rachel created a gift that has just recently resurfaced. In March 2006, she spoke to a video camera about how she was feeling and her frustrations with doctors who refused to recognize that Lyme disease even exists in California. It is a visual record of a young teenager trying to make sense of her desperate situation. Her demeanor seems calm, but if you study it closely, you can see the fear and vulnerability trembling below the surface.
But here’s the twist. Last weekend, after she re-discovered her earlier footage, Rachel recorded her present, healthy, walking self, responding to the same questions her younger self had answered. She edited the old and new together, cutting back and forth between 2006 Rachel and 2012 Rachel.
Together, the two Rachels have valuable wisdom to impart. Take a look:
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
Lyme disease CAN be managed! Whether or not it can be truly 'beaten' remains to be seen and to be researched. But it IS possible to recover and live a normal life again. Sometimes, it takes years, but it CAN happen.
Do not give up hope!
Here is a great article that I read on LymeDisease.org. So encouraging. So uplifting. I love how the 14 year old girl, and the 20 year old woman (both the same person!) are juxtaposed. So well done. So effective.
TOUCHED BY LYME: 20-year-old’s advice to her 14-year-old self: “You gotta have hope” 1st May 2012
The young woman in the photograph is doing a cartwheel—something she couldn’t do six years ago, when she was wheelchair-bound from Lyme disease. At that time, her body was wracked with pain, 24-7. She had a cascade of other symptoms as well, which made it impossible to go to school, to carry on with normal daily activities, and often, even to get out of bed. Life seemed bleak indeed.Yet, out of her pain and misery, Rachel created a gift that has just recently resurfaced. In March 2006, she spoke to a video camera about how she was feeling and her frustrations with doctors who refused to recognize that Lyme disease even exists in California. It is a visual record of a young teenager trying to make sense of her desperate situation. Her demeanor seems calm, but if you study it closely, you can see the fear and vulnerability trembling below the surface.
But here’s the twist. Last weekend, after she re-discovered her earlier footage, Rachel recorded her present, healthy, walking self, responding to the same questions her younger self had answered. She edited the old and new together, cutting back and forth between 2006 Rachel and 2012 Rachel.
Together, the two Rachels have valuable wisdom to impart. Take a look:
Rachel currently attends college in northern California.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
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