Thursday I had my fifth treatment for Lyme Disease at the West Clinic. As usual, I was pretty ill that afternoon and evening, with dizziness, nausea, muscle aches, light sensitivity and a terrible, splitting headache. But this time, by 9pm I noticed that I was feeling substantially better. Friday morning I awoke feeling refreshed and ready for my day...something that hasn't happened in a long, long time!
I could tell you all about the ASTONISHING improvement in my energy levels over the last three weeks; or I could tell you how I've gone from dealing with upwards of 30 Lyme symptoms in any given day, to perhaps 2 in that same time period. I could tell you how I go to bed feeling sleepy, ready to sleep and am now getting a good night's rest. Or I could tell you how I actually am having hunger pangs again when it's normal to feel hungry. I guess I would also need to point out that in spite of terrible exhaustion, insomnia is a major part of Lyme Disease; and that I had totally lost any appetite for food, including ever feeling "hungry," (in spite of not being able to lose any weight,) and that a month ago my husband pointed out that I never ate anything unless he made it and insisted I eat it. This was one of his major concerns that he wanted to discuss with the doctor on my first appointment. There are many other things I could point to or tell you about that have completely amazed us about the last three weeks.
For my part, I feel like telling you the things I've been ABLE to do in the last three weeks (that I have been UNABLE to do since I relapsed) might be the most effective illustration:
1) Wrestle, lift, dance with and carry my children around the house
2) Vacuum, sweep, do laundry, dishes and other household chores
3) Carry my children up the stairs and lift them into their cribs for naps & bedtime
4) Walk up the stairs without having to stop to rest halfway up
5) Walk around the house & up the stairs without being winded
6) Go to the grocery store, walk around and push the cart
7) Be able to get through the day without lying down once
8) Drive my car
In addition to being able to do all these mundane, ordinary every day things that most healthy people take for granted or even begrudge, I've also been able to do some really AMAZING things, especially considering that three weeks ago I could hardly take 5 steps out of bed or off the couch without being completely winded and exhausted. Some of the fun stuff includes:
9) Walking around the local mall for a couple of hours, including trying on clothes
10) Going out to dinner with my kids, husband and mother-in-law
11) Cleaning out and organizing my pantry
12) Canning 54 pints of food over the last week (a new hobby of mine)
13) Deep cleaning my house, going to bed tired and then waking the next day feeling rested and ready to go again
14) Going to a salon for a haircut & pedicures with my mother-in-law
15) Unloading groceries, luggage and kids on my own
16) Attending all three hours of our church services without being exhausted
17) Realizing that as I type this, I have NO PAIN anywhere in my body
I could go on and on, but I think that's enough to make my point. We are thrilled at the prospects of this new treatment. When we first heard about the clinic, we heard that people that were much SICKER than I were having these results. We were dubious. We were skeptical. We were nervous. It all seemed so strange and so different from everything we had been told that we needed to do. But there's something about having a debilitating illness that makes you open to trying just about anything. So we tried it, and now, I'm experiencing those same results that others had told us about.
Lest you think that I'm exaggerating, I will tell you that the day of treatment, and sometimes the day after, are a little rough....mostly "flu-like" symptoms for me. And, in my excitement and exuberance at having energy and feeling normal, I did "over-do it" one day, needing to take it easy the next day. But that's only happened once in these last three weeks. What I'm trying to say, is that while I've been feeling extraordinary compared to where I was three weeks ago, I don't want to misrepresent things. But I also need to qualify that statement by saying that compared with my two-years-long combination antibiotic therapy two years ago, this has been an absolute cake walk!
After dealing with Lyme Disease for a decade already, we're not naïve enough to think that this will be quick or easy. We've been warned that Lyme patients sometimes need 60 or 70 treatments before things resolve and they can go off treatment. By the time I have my re-evaluation in July, I will have done 21 treatments. But I'm perfectly ok with however long this takes. If I can enjoy this kind of quality of life, while I'm on treatment, it gives me so much hope for my future and getting back to my old self, the person I was 10 years ago before all of this started! I have so much hope of finally being able to organize my life and my family the way I have wanted to for so long, but have not had the physical or mental ability to do so. Finally, incredible hope for being able to be a hands-on Mom, to be able to really get down and play with my kids, and to be an involved and enthusiastic companion to my husband. These are the things that are most important to me, and they're the things that have been impacted the most by this illness. I can't tell you how relieved I am that I can pick up my kids when they cry for me, and I don't have to feel such deep sadness and guilt that I can't take care of them myself.
When all of this started happening back in November, I was disappointed. By February, when I had become virtually incapacitated once again, I was completely discouraged and feeling hopeless. Now, in light of having found this doctor and this clinic, I am so grateful for the timing in all of this. I realize that had I not relapsed while living where we do, I may never have heard about this doctor, this clinic or this treatment. People fly in from all over the world to be treated here, and we're only 90 miles away. I am so grateful for a loving Heavenly Father, who provides for our needs and wants. And while He doesn't always lift our burdens completely, if we will allow him to guide us, He will show us how we can get through them successfully.
My next treatment is tomorrow morning at 11am. I would never have thought in a million years that I would actually anticipate going to treatments, looking forward to them as I would any other great event in my life. But I do! It seems as though I can almost feel my body getting stronger and more capable. It has been absolutely wonderful. I'll keep you posted, but for now, things are really looking up.
Sunday, April 28, 2013
Tuesday, April 16, 2013
Yolanda Foster Speaks Out About Lyme Disease
Yolanda Foster, wife of Grammy-award winning songwriter and producer David Foster, and cast member of Bravo TV's Real Housewives of Beverly Hills was honored on April 9th with a Star Light Award from the Lyme Research Alliance at their annual Time for Lyme Gala, raising money for Lyme Disease research. Foster was honored with the award because she has spoken openly about her struggles with Lyme, her diagnosis and strenuous treatment regimen. You can read more about the awards gala here.
In her acceptance speech at the gala, Yolanda recounted her experience with Lyme in her usual and refreshing frankness, stating that Lyme Disease led "to some of the darkest days of my life."
In her acceptance speech at the gala, Yolanda recounted her experience with Lyme in her usual and refreshing frankness, stating that Lyme Disease led "to some of the darkest days of my life."
You can also watch as Yolanda briefly discusses her journey with Lyme Disease with host Andy Cohen on Bravo TV's Watch What Happens Live. Yolanda has been very public about her fight with Lyme since December 2012. You can read more about her and other celebrities in a previous post, Celebrities Get Lyme Disease, Too.
Sunday, April 14, 2013
1st Treatment at the West Clinic!
My first day of treatment at the West Clinic in Pocatello, Idaho began early. We live a little less than two hours away, so my husband and I got up early (and he took the day off from his Veterinary Medicine studies) so that we could make our 8:30am appointment on time. I was nervous, excited and a little apprehensive all rolled into one as we drove the 90 some miles to the clinic. During the drive, we talked about our five year trek since discovering I have Lyme Disease, how it has affected us, how we have learned and grown from the experience, and how we continue to be frustrated with the ignorance (and on the part of some medical professionals, arrogance,) that still surrounds this difficult illness. It has been quite the journey. We were both very hopeful at the prospect of trying a new approach to healing.
We arrived at the West Clinic just before 8:30am, along with 8 or 10 other patients, and walked into the busy waiting area by the front desk. It felt clean and professional, with friendly staff. The girl at the front desk asked for my name and told us it would be just a few moments while having me sign in. I had already filled out my new patient paperwork the week before when I received a packet in the mail outlining many of the various treatments offered and other helpful information, along with all my new patient forms. We also thought it was a nice touch that the packet included a map to the clinic and driving directions from Salt Lake City (the general route we would be driving.) It also included a brochure from a local hotel that has special rates for patients of the clinic.
This begun a busy day of meeting staff, including Alicia, the clinic's Lyme coordinator, (that's right. They have a Lyme coordinator,) whose daughter suffered with Lyme disease from age 3 until she was finally diagnosed and treated at the clinic at the age of 15. I could be wrong, but as I understand it, Alicia's daughter Sarah was the first patient treated for Lyme at the West Clinic. We had heard her story and were anxious for an update. According to her mom, Sarah has been symptom free for the last 3 and a half years and comes to the clinic once or twice a year for maintenance treatments. She now swims, bikes, hikes and enjoys a wonderful and normal life. You can learn more about Sarah's story by watching her testimonial: http://www.youtube.com/watch?v=dIkbzHMRN1s. Also, this news Story on West Clinic: http://www.youtube.com/watch?v=oTa_9SW3Nvk
Right off the bat, she said she could see that there was lots of "stacking" going on -- where the red blood cells were sticking to each other, clumped together. She explained that this kept them from getting the oxygen they are supposed to deliver around the body where it's supposed to go, which will cause extreme fatigue, and shortness of breath.
After several more tests, we met with "Dr. J" as everyone calls him - Dr. Jason West, the doctor that heads up the West Clinic. He was very sincere and took time to explain his philosophy and approach to healing. He explained that this was a totally different approach than the one we had previously tried, but that in his experience, it's extremely effective. Half of the clinic's patient base are Lyme patients from all over the US and the world, including places as far away as Australia. Dr. J explained that while he could identify spirochete cysts in my blood, as well as parasites in my blood cells, he didn't differentiate or distinguish between the bugs. This treatment was effective for all of them, unlike anti-biotics, so he wasn't really concerned with the specific types of bugs, just that they were there.
This is a good time for me to mention that, if you suffer from Lyme Disease, you probably know how expensive and difficult, (not to mention INACCURATE) the testing process is. This particular philosophy opens the door to so many very ill patients who have been denied care because they can't PASS the test to prove they've got Lyme. A test that the CDC admits is inaccurate up to 60% of the time! I have all my paperwork and test results from four years ago, actual documentation of my CDC positive Western Blot. I was one of the lucky ones that got a positive result. But those old test results didn't matter here: it's a shift in focus away from the specific bugs. The focus of this treatment is to change the environment, (your body) so that it's less favorable to the bugs, and strong enough to fight them off on it's own. I know...if you've got Lyme and you're reading this, your probably very skeptical. I promise you that we were, too. But after talking to so many people that have had success with this treatment, we felt like there's got to be something to it. The doctor talked to us for quite awhile, explaining everything, and took time to find out if we had any further questions when he was done.
Once we had met with Dr. J and gone over my tests and symptoms, they took me into a quiet room and got me set up for my treatment. Today's treatment would be IV Vitamin C, (to boost immune function, among other things,) Hydrogen Peroxide (to oxygenate the blood, among other things) and Hydrachloric Acid (to clean out the lymph system and kill the bacteria, among other things,) in addition to a session with the Rife Machine, which uses electrical pulses to kill bacteria. Dr. J said they were giving me a quarter of the dose we would work up to, but that it was better to ease in slowly. Got it. Once I was hooked up to everything, it was time to just sit back and relax.
When the treatment was over we headed home. About an hour into our drive, we stopped to get gas, and I got out to use the restroom. After a few steps, I realized that I felt very woozy, and had the familiar "floating" feeling that I had previously experienced with a herxheimer or herx reaction when I started treatment back in 2009. This reaction is literally caused by the "die-off" of the bacteria, because spirochetes release neuro-toxins when they die. When a bunch of them die all at the same time, the body becomes flooded with these toxins, and they can make you very sick. Symptoms of a herx can include sleepiness, nausea, headache, muscle aches and generally feeling terrible. They can also happen in the form of a worsening of all the Lyme symptoms you've already been experiencing. Many people describe it as the worst hangover you've ever had. I don't drink, so I wouldn't really know what a hangover is like, but they don't sound fun. :)
When I got back into the car, I told my husband how I was feeling. We were both actually happy, since this reaction meant that the treatment had been effective in killing bacteria. Once we got home, I crawled into my bed and tried to sleep it off. I was pretty uncomfortable that night, but woke up the next morning feeling a little bit better - still nauseated, sleepy, etc., but less miserable than the night before. My sweet husband had stocked our bedroom with soda crackers, my favorite Vernor's ginger ale, ginger candies and lemon water, all of which have helped in the past with my herx reactions. Whenever I'm experiencing a herx, I try to lay in my bed as still as possible, and let my body heal, reminding myself of everything that is going on inside me. During a herx, lying as still as possible is about all you want to do, since moving causes the nausea, dizziness and everything else to be worse.
Friday (the second day post-treatment) I woke up feeling about the same, but after a morning nap, I got up with energy, strength and feeling better than I have in months. I could do laundry, dishes, make my bed and clean my house for the first time in months! I got to play with my kids, change their diapers and carry them up our stairs without being totally out of breath. We were so happy! I almost expected that on Saturday I would be back in bed, just because I had done so much on Friday. The last time I was on treatment, I would have a good day and totally over-do it...causing me to spend the next several days out of commission. But Saturday I woke up feeling great, and after a full day of cleaning, organizing and playing with my kids, we all went out to dinner AND shopping, (something I haven't been up to doing in several months.) This morning, (Sunday) I attended all three hours of our church services, another thing I haven't been able to do in several months. By this afternoon, however, I started to feel like I was dragging again, and could feel myself getting out of breath on exertion. I'm really happy that I will be going back for my second treatment tomorrow. Obviously, it's too soon to really know how it will all work out, but I sure do feel a lot more excited about my future!
I will continue to document our journey through this treatment, since it's alternative and totally different than anything I've heard or read about Lyme over the last five years. Still, it makes sense to me, and my husband, who is a bit of a brainiac and skeptical of most things. Five years ago I wouldn't have been open to alternative therapy, but after everything that we've been through, I'm ready to try something different. Antibiotic therapy was difficult and extremely expensive, not to mention being hard on my body...only to end up back at square one two years after wrapping it up. If you or a loved one is struggling with chronic lyme disease, I would strongly encourage you to do your own research on this treatment. Be open-minded enough to look into it. I have provided a few of the links that we found as we researched it. For more information on Dr. Jason West, The West Clinic, and this alternative therapy, visit:
The West Clinic, Pocatello, Idaho: http://www.westcliniconline.com/
About Dr. Jason West/West Clinic: http://www.idchiro.org/dr-jason-west
Interview with Dr. Jason West: http://www.seasonsonthefly.com/blog/?page_id=89
Intravenous Hydrochloric Acid Therapy: http://www.tldp.com/issue/11_00/martin.htm
We arrived at the West Clinic just before 8:30am, along with 8 or 10 other patients, and walked into the busy waiting area by the front desk. It felt clean and professional, with friendly staff. The girl at the front desk asked for my name and told us it would be just a few moments while having me sign in. I had already filled out my new patient paperwork the week before when I received a packet in the mail outlining many of the various treatments offered and other helpful information, along with all my new patient forms. We also thought it was a nice touch that the packet included a map to the clinic and driving directions from Salt Lake City (the general route we would be driving.) It also included a brochure from a local hotel that has special rates for patients of the clinic.
This begun a busy day of meeting staff, including Alicia, the clinic's Lyme coordinator, (that's right. They have a Lyme coordinator,) whose daughter suffered with Lyme disease from age 3 until she was finally diagnosed and treated at the clinic at the age of 15. I could be wrong, but as I understand it, Alicia's daughter Sarah was the first patient treated for Lyme at the West Clinic. We had heard her story and were anxious for an update. According to her mom, Sarah has been symptom free for the last 3 and a half years and comes to the clinic once or twice a year for maintenance treatments. She now swims, bikes, hikes and enjoys a wonderful and normal life. You can learn more about Sarah's story by watching her testimonial: http://www.youtube.com/watch?v=dIkbzHMRN1s. Also, this news Story on West Clinic: http://www.youtube.com/watch?v=oTa_9SW3Nvk
After meeting with Alicia and discussing my case, including all the ups and downs of dealing with Lyme, she prepared a slide with a few drops of my blood to be reviewed under the clinic's dark field microscope. This was by far one of the coolest parts of the day. We were able to see everything she could see on the large monitor mounted on the wall. At the West Clinic they don't use the Western Blot, PCR or ELISA to determine Lyme. They can perform their treatment based on clinical diagnosis with your history, and they use the dark field microscope to evaluate what is actually going on - in real time - in your blood. It was really amazing.
Right off the bat, she said she could see that there was lots of "stacking" going on -- where the red blood cells were sticking to each other, clumped together. She explained that this kept them from getting the oxygen they are supposed to deliver around the body where it's supposed to go, which will cause extreme fatigue, and shortness of breath. 
In the slide she showed us of healthy blood cells, they are supposed to be all "floating free" and mine obviously aren't. We were also able to see little parasites actually wiggling around in my blood cells, most likely the babesia strains that I tested positive for back in 2009. Babesia is an infection of the red blood cells and can cause lots of problems. You can read more about the two strains of Babesia I have, Babesia Microti and Babesia Duncani, in these previous posts.
This is a good time for me to mention that, if you suffer from Lyme Disease, you probably know how expensive and difficult, (not to mention INACCURATE) the testing process is. This particular philosophy opens the door to so many very ill patients who have been denied care because they can't PASS the test to prove they've got Lyme. A test that the CDC admits is inaccurate up to 60% of the time! I have all my paperwork and test results from four years ago, actual documentation of my CDC positive Western Blot. I was one of the lucky ones that got a positive result. But those old test results didn't matter here: it's a shift in focus away from the specific bugs. The focus of this treatment is to change the environment, (your body) so that it's less favorable to the bugs, and strong enough to fight them off on it's own. I know...if you've got Lyme and you're reading this, your probably very skeptical. I promise you that we were, too. But after talking to so many people that have had success with this treatment, we felt like there's got to be something to it. The doctor talked to us for quite awhile, explaining everything, and took time to find out if we had any further questions when he was done.
Once we had met with Dr. J and gone over my tests and symptoms, they took me into a quiet room and got me set up for my treatment. Today's treatment would be IV Vitamin C, (to boost immune function, among other things,) Hydrogen Peroxide (to oxygenate the blood, among other things) and Hydrachloric Acid (to clean out the lymph system and kill the bacteria, among other things,) in addition to a session with the Rife Machine, which uses electrical pulses to kill bacteria. Dr. J said they were giving me a quarter of the dose we would work up to, but that it was better to ease in slowly. Got it. Once I was hooked up to everything, it was time to just sit back and relax.
When I got back into the car, I told my husband how I was feeling. We were both actually happy, since this reaction meant that the treatment had been effective in killing bacteria. Once we got home, I crawled into my bed and tried to sleep it off. I was pretty uncomfortable that night, but woke up the next morning feeling a little bit better - still nauseated, sleepy, etc., but less miserable than the night before. My sweet husband had stocked our bedroom with soda crackers, my favorite Vernor's ginger ale, ginger candies and lemon water, all of which have helped in the past with my herx reactions. Whenever I'm experiencing a herx, I try to lay in my bed as still as possible, and let my body heal, reminding myself of everything that is going on inside me. During a herx, lying as still as possible is about all you want to do, since moving causes the nausea, dizziness and everything else to be worse.
Friday (the second day post-treatment) I woke up feeling about the same, but after a morning nap, I got up with energy, strength and feeling better than I have in months. I could do laundry, dishes, make my bed and clean my house for the first time in months! I got to play with my kids, change their diapers and carry them up our stairs without being totally out of breath. We were so happy! I almost expected that on Saturday I would be back in bed, just because I had done so much on Friday. The last time I was on treatment, I would have a good day and totally over-do it...causing me to spend the next several days out of commission. But Saturday I woke up feeling great, and after a full day of cleaning, organizing and playing with my kids, we all went out to dinner AND shopping, (something I haven't been up to doing in several months.) This morning, (Sunday) I attended all three hours of our church services, another thing I haven't been able to do in several months. By this afternoon, however, I started to feel like I was dragging again, and could feel myself getting out of breath on exertion. I'm really happy that I will be going back for my second treatment tomorrow. Obviously, it's too soon to really know how it will all work out, but I sure do feel a lot more excited about my future!
I will continue to document our journey through this treatment, since it's alternative and totally different than anything I've heard or read about Lyme over the last five years. Still, it makes sense to me, and my husband, who is a bit of a brainiac and skeptical of most things. Five years ago I wouldn't have been open to alternative therapy, but after everything that we've been through, I'm ready to try something different. Antibiotic therapy was difficult and extremely expensive, not to mention being hard on my body...only to end up back at square one two years after wrapping it up. If you or a loved one is struggling with chronic lyme disease, I would strongly encourage you to do your own research on this treatment. Be open-minded enough to look into it. I have provided a few of the links that we found as we researched it. For more information on Dr. Jason West, The West Clinic, and this alternative therapy, visit:
The West Clinic, Pocatello, Idaho: http://www.westcliniconline.com/
About Dr. Jason West/West Clinic: http://www.idchiro.org/dr-jason-west
Interview with Dr. Jason West: http://www.seasonsonthefly.com/blog/?page_id=89
Intravenous Hydrochloric Acid Therapy: http://www.tldp.com/issue/11_00/martin.htm
Wednesday, April 10, 2013
My New Alternative Therapy
While searching for a new LLMD, we began asking around in our immediate circle of friends here in a small town in northern Utah. Before I get into anything else, I would just like to say that it is ASTOUNDING to me how many more people we know that actually know someone (other than me) who has been debilitated by and is currently battling Lyme Disease, over my experience four years ago. I think its a sad commentary on just how quickly this illness is gaining traction among the unsuspecting public. It truly is an epidemic that is being ignored.
Ok, that thought aside, I'll get on to the purpose of my post. As we began to talk to our friends, many people started contacting us, telling us that they had a family member or close friend currently being treated for Lyme. So we began to follow up on the information they were providing about different clinics, doctors and treatments, how much things cost and how they were all working out. We looked into several different options, but one clinic kept coming up as being very successful in treating Lyme. When we first looked into it, we discovered that they don't use antibiotics, so we thought that it wasn't for us. But when, in the space of one week, we received four other, separate, GLOWING reports about this same clinic from fellow Lymies, we thought that we better give it a closer look.
We discovered that they use many different alternative therapies in combination to do three basic things: 1) kill the infection, 2) detox the body and 3) heal & boost the immune system, so it can continue to keep infection under control. The doctor's opinion, that we can never fully eradicate the infection that causes Lyme disease - so let's heal and strengthen the body - so the immune system is properly equipped to deal with the infection on its own, really resonated with us. We did more research and found other information about the clinic, and continued to get referrals from various sources, also providing us with information, most of which I've listed below, with permission.
My husband is currently studying Veterinary Medicine and it's been interesting to get his perspective (and his professors' ideas & opinions) on various aspects of the Lyme puzzle. He's been researching the various therapies we've been looking into, and we're both very hopeful that this new therapy might provide some welcome relief. It's also something that I'm more comfortable with than drenching my body in antibiotics for the second time in four years. I have health concerns that I had prior to Lyme disease, and long-term antibiotic therapy is of particular concern because of that. My initial appointment is today, and I will give a full report on how it goes in a day or two.
Ok, that thought aside, I'll get on to the purpose of my post. As we began to talk to our friends, many people started contacting us, telling us that they had a family member or close friend currently being treated for Lyme. So we began to follow up on the information they were providing about different clinics, doctors and treatments, how much things cost and how they were all working out. We looked into several different options, but one clinic kept coming up as being very successful in treating Lyme. When we first looked into it, we discovered that they don't use antibiotics, so we thought that it wasn't for us. But when, in the space of one week, we received four other, separate, GLOWING reports about this same clinic from fellow Lymies, we thought that we better give it a closer look.
We discovered that they use many different alternative therapies in combination to do three basic things: 1) kill the infection, 2) detox the body and 3) heal & boost the immune system, so it can continue to keep infection under control. The doctor's opinion, that we can never fully eradicate the infection that causes Lyme disease - so let's heal and strengthen the body - so the immune system is properly equipped to deal with the infection on its own, really resonated with us. We did more research and found other information about the clinic, and continued to get referrals from various sources, also providing us with information, most of which I've listed below, with permission.
My husband is currently studying Veterinary Medicine and it's been interesting to get his perspective (and his professors' ideas & opinions) on various aspects of the Lyme puzzle. He's been researching the various therapies we've been looking into, and we're both very hopeful that this new therapy might provide some welcome relief. It's also something that I'm more comfortable with than drenching my body in antibiotics for the second time in four years. I have health concerns that I had prior to Lyme disease, and long-term antibiotic therapy is of particular concern because of that. My initial appointment is today, and I will give a full report on how it goes in a day or two.
Monday, April 8, 2013
ELISA & Western Blot Tests for Dummies
Testing is such a difficult aspect of getting a proper diagnosis for Lyme Disease. I was diagnosed (and properly tested) by an LLMD over four years ago and still haven't fully figured out the tests, how they work and what exactly the problems are. Obviously I understand everything well enough to be able to logically explain the problems with other non-medical types, but if you ask me specific questions, well, I probably wouldn't have specific answers. So I'm on a mission to better understand these tests.
I am a member of an online Lyme support group, and recently discovered a post that another member did to help people to understand the ELISA & Western Blot tests a bit better. I was very grateful for this information, and delighted to find in the comments that it was ok to spread the information around. So, I'm sharing it here!
"An ELISA test is a much weaker test than a Western Blot. ELISA looks at a single antigen (bacterial protein) to say if a patient has Lyme or not. In October 2010 a University of Medicine and Dentistry of New Jersey (UMDNJ) published a study saying that there are 13 strains of Borrelia (Lyme) Here is the story in Discover Magazine. The current ELISA tests are based on just one strain, B-31. The ELISA test uses a single antigen from this strain as an attachment point for a patient's antibodies. Clearly this recent discovery of many more strains could mean that the single antigen of the ELISA test is not shared by all the strains. This might explain why the ELISA test often misses cases of Lyme. Some companies even use a synthetic version of the antigen.
ELISA is usually done because it is a cheaper test at about $75, while a Western Blot can run around $200 to check for early & late antibodies (IgM (~$100) and IgG (~$100))."
"The Western Blot test runs a patients sample through a gel with the use of an electric current. The patients antibodies are complexed (bound) to broken up bacterial parts in the sample. The electric current drags these bound pairs through the gel. The different weighted pairs end up in different places in the gel with the lighter pieces moving the farthest. These different places are represented as bands in the gel. The bands create a pattern and there are patterns that indicate if antibodies have been bounded to Lyme bacterial parts. This can indicate if Lyme is present. The advantage of the Western Blot over the ELISA test is that far more indicators are examined than the single antigen in ELISA. Perhaps the 13 strains will differ in a couple of particular antigens, but when you start looking at many antibody complexes it will become more difficult to miss Lyme's presence.
Think about comparing cars, with different models representing different strains. If you check for only one thing like GPS navigation to define the vehicle as a car, you will miss a lot of models that aren't equipped with that feature. This one feature test for determining if a thing is a car would be like using the single feature ELISA test. But suppose you start comparing a bunch of features like GPS navigation, steering wheel, 4 doors, fuel injection, foglights, and Air conditioning as defining a thing as a car. With a greater selection of features you will properly identify more things as cars. This is like using the Western Blot test which is looking at a broader scope in identifying Lyme's presence through antibody activity."
The band information I got from a number of websites. The International Lyme and Associated Diseases Society (ILADS) may use only a subset of those bands. However the idea of the band usage to identify Lyme's presence is the same. This is one of the webpages: http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077
The entire original post, along with comments, can be found here: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=108294;p=0 The comments are very good, and include good dialog, if you're interested.
I am a member of an online Lyme support group, and recently discovered a post that another member did to help people to understand the ELISA & Western Blot tests a bit better. I was very grateful for this information, and delighted to find in the comments that it was ok to spread the information around. So, I'm sharing it here!
"An ELISA test is a much weaker test than a Western Blot. ELISA looks at a single antigen (bacterial protein) to say if a patient has Lyme or not. In October 2010 a University of Medicine and Dentistry of New Jersey (UMDNJ) published a study saying that there are 13 strains of Borrelia (Lyme) Here is the story in Discover Magazine. The current ELISA tests are based on just one strain, B-31. The ELISA test uses a single antigen from this strain as an attachment point for a patient's antibodies. Clearly this recent discovery of many more strains could mean that the single antigen of the ELISA test is not shared by all the strains. This might explain why the ELISA test often misses cases of Lyme. Some companies even use a synthetic version of the antigen.
ELISA is usually done because it is a cheaper test at about $75, while a Western Blot can run around $200 to check for early & late antibodies (IgM (~$100) and IgG (~$100))."
"The Western Blot test runs a patients sample through a gel with the use of an electric current. The patients antibodies are complexed (bound) to broken up bacterial parts in the sample. The electric current drags these bound pairs through the gel. The different weighted pairs end up in different places in the gel with the lighter pieces moving the farthest. These different places are represented as bands in the gel. The bands create a pattern and there are patterns that indicate if antibodies have been bounded to Lyme bacterial parts. This can indicate if Lyme is present. The advantage of the Western Blot over the ELISA test is that far more indicators are examined than the single antigen in ELISA. Perhaps the 13 strains will differ in a couple of particular antigens, but when you start looking at many antibody complexes it will become more difficult to miss Lyme's presence.
Think about comparing cars, with different models representing different strains. If you check for only one thing like GPS navigation to define the vehicle as a car, you will miss a lot of models that aren't equipped with that feature. This one feature test for determining if a thing is a car would be like using the single feature ELISA test. But suppose you start comparing a bunch of features like GPS navigation, steering wheel, 4 doors, fuel injection, foglights, and Air conditioning as defining a thing as a car. With a greater selection of features you will properly identify more things as cars. This is like using the Western Blot test which is looking at a broader scope in identifying Lyme's presence through antibody activity."
The band information I got from a number of websites. The International Lyme and Associated Diseases Society (ILADS) may use only a subset of those bands. However the idea of the band usage to identify Lyme's presence is the same. This is one of the webpages: http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077
The entire original post, along with comments, can be found here: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=108294;p=0 The comments are very good, and include good dialog, if you're interested.
Thursday, April 4, 2013
Protect Yourself from Lyme with Repellent!
I LOVE being outside. In fact, being in the mountains, and hiking on trails winding through thick forests reminds me of what Heaven must be like. The sounds, the smells, the wildlife and the solitude. It truly is my happy place. I can't think of much better than exploring the wonderful forests of the Pacific Northwest. That was, at least, until I contracted Lyme Disease. Now, while I still love being outdoors, I'll admit that I have a bit of anxiety being in those beautiful forests, no matter where they are. I also feel that anxiety when I'm forced to walk through tall grasses, brush, weeds or dead leaves anywhere. That's because all of those things are favorite tick habitat, and in the last four years, I've learned a lot about, and become much more aware of, TICKS.
When I first met with my LLMD (Lyme Literate Medical Doctor) she told me that I should never go camping again. Huh? Lyme Disease has been terrible, and it's something that everyone should take seriously, understand and use precautions against. But I refuse to live my life in fear, and even though these things put you at much higher risk of Tick Borne Diseases, transmitted via tick bites, I will continue to participate in the things I love. But there are many things you can do to protect yourself, and I will be very careful about it.
The easiest thing you can do to avoid ticks is to use insect repellent with Deet. Repel Sportsman Max happens to be my favorite, (pictured below.) YES, I know that DEET can have it's own concerns, when used too frequently. But I'll gladly take my chances with those, than with a bout with Lyme Disease, that is, if I wasn't already battling it. :)
Insect repellant should be applied to any exposed areas of skin, or to thin clothing. I like to apply it to my first layer of clothing, paying special attention to your feet/ankles, hands/wrists/exposed arms, neck and hairline. I even apply it on my hair, and spray it on my hands so that I can rub it on my face. Depending on where you're at, you may not have to be so thorough, but if you're in the deep woods, you do need to be thorough! In addition to this, you can also purchase repellant that is designed to be applied to your clothing, gear and equipment as an additional deterrent for ticks, mosquitos, biting flies, spiders, etc. This repellent contains a chemical called permethrin, which is a stronger repellent than what should be applied to the skin. We use a gear spray that's also by Repel, (pictured below) and these two sprays can be purchased in the camping section of your local WalMart or other sporting goods store. Using repellent on gear such as tarps, tents, sleeping bags & packs will also help to insure that you don't bring home any unwelcome hitch-hikers when you return from your outdoors adventures. The spray should be applied and allowed to dry prior to packing for your trip. It goes without saying that this should be done in your yard or a well-ventilated garage.
There are many other things that you can do to protect yourself and your family. They include frequent tick checks during and after outdoor activities; wearing light-colored long sleeves & long pants; staying on trails, and away from underbrush, leaf litter or fallen logs; and upon returning home, throwing your clothes into the dryer for 15 minutes. Ticks are extremely heat sensitive, and this is enough to kill any that might be clinging to your clothing. A shower will also help you to find/identify/get rid of any ticks that might be hiding in hard-to-see places.
When I first met with my LLMD (Lyme Literate Medical Doctor) she told me that I should never go camping again. Huh? Lyme Disease has been terrible, and it's something that everyone should take seriously, understand and use precautions against. But I refuse to live my life in fear, and even though these things put you at much higher risk of Tick Borne Diseases, transmitted via tick bites, I will continue to participate in the things I love. But there are many things you can do to protect yourself, and I will be very careful about it.
The easiest thing you can do to avoid ticks is to use insect repellent with Deet. Repel Sportsman Max happens to be my favorite, (pictured below.) YES, I know that DEET can have it's own concerns, when used too frequently. But I'll gladly take my chances with those, than with a bout with Lyme Disease, that is, if I wasn't already battling it. :)
Insect repellant should be applied to any exposed areas of skin, or to thin clothing. I like to apply it to my first layer of clothing, paying special attention to your feet/ankles, hands/wrists/exposed arms, neck and hairline. I even apply it on my hair, and spray it on my hands so that I can rub it on my face. Depending on where you're at, you may not have to be so thorough, but if you're in the deep woods, you do need to be thorough! In addition to this, you can also purchase repellant that is designed to be applied to your clothing, gear and equipment as an additional deterrent for ticks, mosquitos, biting flies, spiders, etc. This repellent contains a chemical called permethrin, which is a stronger repellent than what should be applied to the skin. We use a gear spray that's also by Repel, (pictured below) and these two sprays can be purchased in the camping section of your local WalMart or other sporting goods store. Using repellent on gear such as tarps, tents, sleeping bags & packs will also help to insure that you don't bring home any unwelcome hitch-hikers when you return from your outdoors adventures. The spray should be applied and allowed to dry prior to packing for your trip. It goes without saying that this should be done in your yard or a well-ventilated garage.
There are many other things that you can do to protect yourself and your family. They include frequent tick checks during and after outdoor activities; wearing light-colored long sleeves & long pants; staying on trails, and away from underbrush, leaf litter or fallen logs; and upon returning home, throwing your clothes into the dryer for 15 minutes. Ticks are extremely heat sensitive, and this is enough to kill any that might be clinging to your clothing. A shower will also help you to find/identify/get rid of any ticks that might be hiding in hard-to-see places.
For more information, visit an older post, An Ounce of Prevention. You can also visit LymeDisease.org for additional information and tips on preventing Lyme Disease.
Monday, April 1, 2013
Celebrities Get Lyme Disease, Too
Lyme Disease does not discriminate. This disease is a bacterial infection that can be spread by an insect bite, among other modes of transmission. Unlike other prevalent illnesses, factors such as lifestyle, age, economic or social class, family history and lack of "at-risk behaviors" can not keep anyone safe from this disease. Many celebrities battle Lyme Disease, although I suspect there are many more out there that do not want to make their battle public because of the controversial nature of the illness. Probably still more have been misdiagnosed, just as with all us lowly peons in the general population. Here are a few celebrities that we know about:
1) The 2007 Annual Report on the President's Health revealed that former President George W. Bush had been treated for Lyme Disease in August 2006 after the appearance of a classic bulls-eye rash. It is believed that the President was likely bitten on a bike ride.
2) Former World No. 1 and three-time Grand-Slam Champion, Jennifer Capriati revealed in January 2013 that she has been suffering with Lyme Disease since she had to quit tennis due to injuries over a decade ago.
3) Daryl Hall of the classic "Hall & Oates" was forced to cancel appearances when he was diagnosed in 2005 after having a bulls-eye rash and flu-like symptoms.
4) Actor Alec Baldwin has reported having Chronic Lyme Disease and told the New York Times that his symptoms return annually.
5) Actress Parker Posey (from the movie "Best in Show" among others) used both antibiotics and holistic supplements in her battle with Lyme Disease in 2009.
6) Author Amy Tan (The Joy Luck Club) experienced hallucinations, insomnia, confusion, neck & joint pain and numbness while she spent over $50,000 and saw 11 different doctors trying to find out what was wrong with her body. She eventually found out about Lyme Disease while searching her symptoms on the internet. She was treated by an LLMD and has since started a charity, Lyme Aid4Kids, in the hopes of raising awareness of this disease.
7) Jamie Lynn Sigler (of the Sopranos) contracted the illness in 2000. She first noticed that her feet had become "tingly," but eventually her legs became paralyzed. She made a full recovery with antibiotic treatment.
8) Pulitzer Prize winning novelist and poet Alice Walker self diagnosed herself with Lyme Disease after a fruitless search with doctors. She later described the disease as "physically debilitating."
9) Yolanda Foster (of The Real Housewives of Beverly Hills) shocked her fans in early December 2012 when she tweeted out that she had been diagnosed with Chronic Lyme Disease and was getting a port so she could begin antibiotic treatment. She is currently not sure whether she will be able to participate in this next season when taping resumes in April.
1) The 2007 Annual Report on the President's Health revealed that former President George W. Bush had been treated for Lyme Disease in August 2006 after the appearance of a classic bulls-eye rash. It is believed that the President was likely bitten on a bike ride.
2) Former World No. 1 and three-time Grand-Slam Champion, Jennifer Capriati revealed in January 2013 that she has been suffering with Lyme Disease since she had to quit tennis due to injuries over a decade ago.
3) Daryl Hall of the classic "Hall & Oates" was forced to cancel appearances when he was diagnosed in 2005 after having a bulls-eye rash and flu-like symptoms.
4) Actor Alec Baldwin has reported having Chronic Lyme Disease and told the New York Times that his symptoms return annually.
5) Actress Parker Posey (from the movie "Best in Show" among others) used both antibiotics and holistic supplements in her battle with Lyme Disease in 2009.
6) Author Amy Tan (The Joy Luck Club) experienced hallucinations, insomnia, confusion, neck & joint pain and numbness while she spent over $50,000 and saw 11 different doctors trying to find out what was wrong with her body. She eventually found out about Lyme Disease while searching her symptoms on the internet. She was treated by an LLMD and has since started a charity, Lyme Aid4Kids, in the hopes of raising awareness of this disease.
7) Jamie Lynn Sigler (of the Sopranos) contracted the illness in 2000. She first noticed that her feet had become "tingly," but eventually her legs became paralyzed. She made a full recovery with antibiotic treatment.
8) Pulitzer Prize winning novelist and poet Alice Walker self diagnosed herself with Lyme Disease after a fruitless search with doctors. She later described the disease as "physically debilitating."
9) Yolanda Foster (of The Real Housewives of Beverly Hills) shocked her fans in early December 2012 when she tweeted out that she had been diagnosed with Chronic Lyme Disease and was getting a port so she could begin antibiotic treatment. She is currently not sure whether she will be able to participate in this next season when taping resumes in April.
Good for Yolanda Foster, for making her battle with Lyme Disease so public! I hope that any and all celebrities who might themselves be battling Lyme Disease will follow her lead in coming forward and helping to bring awareness to this growing epidemic.
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