Lyme Disease Then & Now...an Update on Me

The question I get most often in emails and various communications from those that follow this blog is, "How are you doing now?" Many people write me inquiring about a specific doctor, clinic or protocol I have personally followed for treatment, wondering if it CURED me. A lot of people mention in their communications that they are researching these different options, but don't want to waste their time/money/energy on something if it doesn't work.

Each of these messages evokes very mixed emotions in me. First, it feels a little overwhelming that anyone would base any portion of such a serious and personal decision on my experience. Second, I feel sorry for people who are so desperately in search of answers but seem to be asking the wrong questions - I've been there myself. Third, I feel badly that so many people actually think they can be CURED. There is so much that I want to say about each of these thoughts, that I'm going to try to break it down here.

To start out with, I want to scream from the rooftops that LYME DISEASE AFFECTS EACH OF US DIFFERENTLY!! No two cases are alike. Even if you and I both have Lyme disease, there are so many factors that determine what will or won't work for us. Our immune systems, genetics, co-infections, the time that we've gone undiagnosed, even factors that are far more difficult to measure such as spirituality, family support and a belief that you can get better, will affect how any treatment works or doesn't work for you. This is something that anyone battling Lyme disease needs to understand and internalize. One of the reasons that we're dealing with the mess that we're dealing with here in the Lyme lands, is that this illness looks different on almost everyone.

YES. There are commonalities. Similar symptoms in the short term & long term of the illness. But if you got 50 patients, all suffering from Lyme, in one room and started comparing symptoms, they would all be different. YES. Headaches, muscle weakness, pain, fatigue, short term memory loss, joint pain and neurological symptoms would probably dominate the conversation...but then you would start discussing stomach problems, abdominal pain, mastoiditis, hearing problems, vision problems, skin problems, blood issues, hormonal imbalances, foot pain. I could keep listing, but most people reading this are well versed in the fact that Lyme can attack any body system, and can masquerade as almost any illness or disease out there. Because the disease (or infection) affects each of us so uniquely, there will not be any one "all-inclusive" answer for each of us individually. It's one of the major reasons its so difficult to get an accurate and timely diagnosis, and it's one of the major difficulties in finding the right treatment modality.

I started this blog in January 2009 when I had so many questions, and precious few answers. I seemed to sense however, that I was at the beginning of a very long journey and I wanted to document it. I'm glad that I did, as it has provided me with perspective and a record of where I've come from. That has helped me on more than one occasion of feeling very discouraged with this seemingly un-ending path and all of its hills, pot holes and setbacks. The blog has taken on a life of its own as more and more people have read about my experiences. It makes me happy to be able to share what I have learned for myself, in my journey with Lyme. I'm glad that perhaps I can offer an additional piece in someone else's search for help and hope. But I cannot offer answers for anybody else. All I can do is hope to point people in a few directions that perhaps they have not looked into. Each of us has to thoroughly research our options and weigh them against our own personal experience and situation. I think we all know this already, but I think it bears repeating.

Today, almost twelve years after contracting Lyme disease, and a few months more than six years into actively treating it, I think I'm in remission. I AM NOT, AND HAVE NEVER CLAIMED TO BE, CURED. At present, there is NO CURE for Lyme disease...unless you've been lucky enough to have a doctor prescribe 21 days of doxycycline when you showed up at his office with a bullseye rash. Since you're reading this blog, that's probably not the case for you. It wasn't the case for me. So for those of us that have been sick for years, I hate to say it, but it's just the truth, to the best of my knowledge, there's currently NO CURE for chronic Lyme disease. Not for me, not for you, not for anyone. There are effective treatments. There are effective ways to manage it. Some people do extremely well on various treatments that have worked for their own particular brand of Lyme.  Others, in spite of their best efforts, continuously struggle. Theoretically, even if you're lucky enough to be a-symptomatic, there is always a chance of it coming back, because of the nature of the bacteria and its ability to adapt and hide in the body's deep tissues. The goal is to get things into remission...so the immune system is in control once again. This means that if at any point, the immune system loses control, (read: you get the flu, too little sleep or too much stress) you have the potential of dealing with a flare of symptoms, or a full-blown relapse.

Over the last six years, we have spent four years actively treating this illness. Treatment has included combination antibiotic therapy, nutritional supplements, injections and intravenous infusions including hydrogen peroxide, hydrachloric acid and massive dose vitamin C. Each of the treatments that we have done has helped with abating my Lyme disease symptoms. Each has involved discomfort and side-effects of some sort, including the well-know herxheimer reaction. None have been covered by insurance, and each is extremely costly. I would not change anything that my husband and I have done on our path to try to manage my illness. I am thrilled with the progress we have made. But I am not CURED. As I stated above, I think I AM in remission.

I recognize that I will never be the person I was before Lyme disease, and I can't expect my body to function the way it did before Lyme disease. Translation: I have to take extra-special care of myself. This is a really hard thing for a MOMMY to remember, let alone do. But I try to focus on drinking plenty of water, getting as much rest as possible, and taking quality nutritional supplements every single day. I personally believe that spirituality, meditation and prayer help immensely in the healing process, and I try to include these important elements in my daily life. Additionally, I utilize other alternative healing modalities such as a personalized hypno-therapy session (recorded as I worked with Dr. H at West Clinic) targeting immune function (don't knock it 'til ya try it) that I have on CD and try to listen to at night as I go to sleep. I have been doing this for over a year now. I also use the "cupping" method with DoTerra Lemongrass essential oil on a daily basis to help improve memory and reduce brain fog. I realize I may have lost a few of you with these last couple sentences...but having dealt with so many "closed minds" in the world of Lyme disease, we have become fairly open minded in what we're willing to try. And to me, the proof is in the pudding. I don't care if it can't be scientifically quantified or explained. If I try something and it seems to help me feel better, I'm open to utilizing that option. Why would you not? Even if it is placebo...and I'm inclined to believe that most of this stuff is NOT placebo. If it were possible to "think" myself well, I dang well would have done it a long time ago...I don't know anyone who would love to be my old, healthy self again more than me! Honestly, I really don't care what anyone else thinks anyway. All I'm worried about is how I feel and how I can function with the best quality of life possible.

For our purposes here today, I'd like to explain my personal "definition" of remission. You might define it differently, so here's how I define it: I still deal with (on an almost daily basis) fatigue, muscle aches & joint pain of varying degrees, although substantially less than before treatment! I still have problems with my short term memory, although these are much improved unless I am overly tired, stressed or otherwise sick. I still often don't feel like I have enough energy to get out of the house, and there are days where I feel like I just need to stay in bed. Because I live in reality, and I have two young children and a very busy husband working on a DVM, I rarely GET to stay in bed - but I have days where I wish I could. In spite of this, I also have a very good quality of life.

For the most part, I can do the things that I want to do on a daily basis without much thought for how we should be compensating for Lyme disease. Occasionally I do have "flares" of my classic Lyme disease symptoms, and when that happens I have started to take it as my body telling me its struggling, and it's time to be kind to myself. We manage flares by doubling and tripling up on my nutritional stuff, (I use a fabulous supplement that I am able to double and triple up on -- don't do that without making sure that its safe!) trying to get as much rest as possible, drinking lots of water and trying to purposely think positive thoughts! So far, we have done really well. I haven't had a treatment since late April of last year - so it's been an entire year that I've been off treatment, and I'm feeling consistently better on a daily basis than I have in years. Literally. But having said all of this, my husband and I are fully aware, and have planned for, my future need for additional and continuing  treatment in the event of another major relapse. For now, I am very pleased with where I'm at, and I feel lucky to be here.

Treatment Update

Here's a quick update, since I haven't been blogging a lot lately. First I'd like to point out that I haven't been blogging a lot lately because I've been busy living my life and am spending a lot less time laying around in bed or on our couch. Last Monday, (seven days ago) marked my 8th week of treatment at West Clinic. While I still have days where I don't feel great, they are becoming so few and far between that we have almost gotten back into the groove of normal life! It has been wonderful and exciting, and I am so, so happy.

For those of you that are new to my blog, I have been battling Lyme Disease since late summer of 2003, although I didn't know it was Lyme until I was finally diagnosed and saw an LLMD in January of 2009. By that time I was extremely ill, with a whole litany of issues that had all but shut me down both physically and cognitively. I did two years of combination antibiotic therapy followed by a couple years of somewhat normal health, but I haven't ever felt back to "pre-lyme-self" in about a decade. I began to relapse in November 2012, and by March of this year I could hardly function, requiring almost constant care for both myself and my kids anytime my husband was not home. It was crazy, stressful, frustrating and gave me a sense of hopelessness that I believe I have never before experienced in my life. It was pretty bad.

So, eight weeks in, I'm feeling 85% better, and usually, other than my treatment days, (which are now only once a week) I'm practically back to normal. I've been taking my kids for walks to the park, planning outings with friends and doing all sorts of "normal" activities that I haven't been able to do for quite a while now. Last month, my husband and I went on a week-long camping trip where we did several different hikes (4 miles long) on back-to-back-to-back days. In the past, on a really good day, I might have been able to do one of those. But then I would pay for it by being out-of-commission for the next 3 or 4 days. To be able to participate in activities like that 3 or 4 days in a row, and continuing to wake up the next morning feeling good, has been amazing. It's been awesome to see that I really am getting my strength and energy back.

I will continue treatment for probably at least the next couple of months, but I'm happy to do it, since I feel like I am really improving, in ways I haven't seen in the last five years. It's very exciting, and I'm loving being able to participate in my own life again!

Five Treatments Down...Sixteen to Go!

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.

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

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.

 

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

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.

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.

 

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.

Babesia duncani

When I was first diagnosed and learning about Lyme Disease and all of it's co-infections four years ago, I had hardly any luck in doing an internet search for information on Babesia duncani, a less commonly seen strain of Babesia. I found a lot of articles full of technical medical jargon, but I was looking for something that the lay person could understand. Eventually, with the demands of long-term treatment, I gave up and haven't really thought much of Babesia duncani in the last four years.

Babesia is a protozoan infection of the red blood cells. It is a malaria-like infection, and in fact is so similar to malaria that it is hard to distinguish between the two under a microscope without proper training. The symptoms, appearance and actions under the microscope of Babesia duncani are very similar to those of Babesia Microti. Upon infection of a host, these little invaders cause lysis or rupture of the host's red blood cells. As the infection takes hold, the little parasites reproduce as quickly as possible and as red blood cell depletion increases, they actually begin to deprive their host of oxygen -- which causes extreme, debilitating fatigue among other possible symptoms.

The following list is from an article by Dr. James Schaller, Exciting News About Babesia:

Babesia Signs and Symptoms
"Babesiosis can cause many different signs and symptoms. Here are the most common that should raise suspicion:

	High fever to persistent low fever
	Slowed thinking
	Listlessness
	Decreased appetite
	Chills Sweats Headache Fatigue Muscle aches
	Joint aches/Pain Depression Anxiety/Panic
	Nausea Vomiting Cough
	Shortness of breath
	Air hunger or unsatisfying deep breaths
	Dark urine
	Enlarged liver (under your right rib cage)
	Enlarged spleen (under your left rib cage)
	Yellow hue on eyes, hands and skin (Jaundice)
	Enlarged lymph nodes (also in Lyme or Bartonella)
	Significant memory change
	Profound psychiatric illnesses
	Struggle organizing
	Daytime sleep urgency despite nighttime sleep
	Waves of generalized itching
	Balance problems with dizziness
	Severe chest wall pains
	Random stabbing pains
	Weight loss or gain Sensitivity to light
	Sleep in excess of 8-1/2 hours per day
	You have received blood from another person

Since Babesia lives within red blood cells, it can cause slugging of the red blood cells and make them slightly deformed. Injury and death can result from slugging blood vessels, lungs and kidneys."

With my recent relapse, I've found myself back in the mode of trying to learn everything I can about the many facets of this illness. Last week, as my husband and I were trying to research various physicians, clinics and treatment protocols, we dug out my file folder of test results from four years ago. My LLMD was extremely thorough in doing my labs, and I have copies of everything we did. As I was looking over them, I noticed for the first time, that there is a brief description given about each result, including information about the infection and how the test works.

Here is the information, word for word, provided by IGeneX Labs on my printed test results: "Babesia duncani, formerly WA-1, is a Babesia-like piroplasma associated with cases of Babesiosis in the Pacific Northwest. The first case of Babesiosis acquired by B duncani was in South-Central Washington State (Quick et al 1993, Ann Intern Med, 119:284).

When I read this, I about fell off my chair. I grew up in Portland, Oregon, where I learned from a young age to appreciate the beauty of the Pacific Northwest through fishing, hiking, camping, spelunking and backpacking. I absolutely loved being outdoors, we spent untold time in the woods, and I spent plenty of time out in nature in the State of Washington, too.

The reason that I was so floored by this information was because I was bitten by a tick in New England, during a late-summer 6-weeks-long trip. I had gotten a large, solid, red rash a few days after returning home, (I was told by the doctor that it looked like a spider bite or allergic reaction and he was not concerned about it,) and I can easily track all of my major symptoms and decline in physical health from that point. I had never considered that I could ever have contracted any sort of tick borne infection in the Pacific Northwest, I don't ever recall having a tick bite, and yet, there it was on my test results.

So that's when I began to really try to think of different things that had happened in my life prior to 2003. Strange rashes, possible tick exposure, really bad "flus" or other illnesses. To my surprise, as I specifically tried to recall these things, I remembered several times, when I was much less informed about TICK BORNE DISEASES (TBD,) where I had not only had tick exposure, but also strange rashes. Once, after backpacking in a beautiful place in South-Central Washington State called Siouxon Falls, near Amboy, Washington, we pulled three huge, ugly and fully engorged ticks off our dog, that had accompanied us on the excursion. A week or two later, (I'm not sure exactly how long it was since this happened in 1998) I got a strange, multi-lesion rash that was first diagnosed as chicken pox, then shingles...even though I had had the chicken pox as a little child and both doctors stated that it didn't really look like traditional CP or shingles. I also had similar rashes three times over a one year period while I was living in Coeur d'Alene, Idaho (just a stone's throw from the Washington State line) in 2002. Each time I would have a significant case of fever & chills, with the rashes appearing the following day.

In addition to Lyme Disease, there are MANY tick borne diseases that can cause significant problems all on their own. These include: Babesiosis, Erlichiosis, Anaplasmosis, Rocky Mountain Spotted Fever, Relapsing Fever, Tularemia, Bartonella, Q Fever, Tick Paralysis, Tick Borne Encephalitis and Colorado Tick Fever, among others. Each is transmitted by a tick bite, but many times, multiple infections are transmitted in one tick bite.

Together in any combination, these illnesses make the diagnosis and treatment of any single infection much more difficult. It is important to be extremely vigilant in photographing and reporting ANY rash or lesion to your doctor. I never took pictures of any of my rashes, and now I really wish I had. Make sure that you also record the date of the rash, any symptoms in the days leading up to or coinciding with the rash appearing, and any travel, outdoors excursions, yard work or known tick exposure (this is extremely important, and the doctor may not ask!) along with any other pertinent information.

Also check out: Babesia & Lyme Disease, a post from earlier this month.

Our Current Quest

Right now we are trying to figure out what to do. I MUST get back on treatment. I'm having all my old symptoms, plus new ones. In order to start treatment again, we've got to figure a few things out. This has become our quest lately, or at least my quest, and last night I apologized to my husband for having tunnel vision about it. It seems that its all I can think about, when I'm able to think clearly. It's hard not to think about Lyme Disease constantly, when I'm constantly dealing with the effects of it. So I'm trying to channel that tunnel vision into a productive, useful purpose. Might as well try to solve some problems. There are three basic things we need to do:

1) Find an LLMD We're Comfortable With:
First, we have to find a doctor, an LLMD with a lot of experience, who will be willing to take me on. We've been investigating different options that we've been able to find on our own, we've also been checking into references given to us by others. Additionally, I've checked in with a couple of resources that help with LLMD referrals. We were hoping to find someone closer than Seattle, which is where I travelled four years ago to be treated by an LLMD. I'm not sure that we're going to be able to find anyone we're comfortable with any closer than that. We need a doctor that is very familiar with Lyme Disease and it's co-infections. I've had this long enough, and I have enough co-infections to have a pretty complex case, although I believe that anyone with Lyme Disease has a pretty complex case. We just really worry about the level of experience with an LLMD. It's not enough just to throw antibiotics at this thing. And when you're talking about long-term, massive doses of antibiotics, it gets even trickier. My former LLMD used integrative medicine, a combination of pharmaceuticals and nutraceuticals or supplements all throughout my treatment. I really believe that this combination helped me get better faster, and with less complications and side effects from the antibiotics. We're hoping to be able to find someone who uses integrated medicine as well.

2) Figure Out How to Pay for It All
Finding a way to somehow come up with the money for me to start treatment again is probably our biggest obstacle. That old saying that goes, "beg, steal or borrow" might be very applicable here. We're not willing to steal, of course, but I think that we are to the point where we may be ready to beg and borrow. We've actually been looking into fundraising options and other ways to earn some extra cash. The cheapest treatment that we've found starts at $6,000 for a minimum 8 week commitment, but it goes up from there based on how sick you are, the type of treatment and medications required and how well you respond. That's not including travel expenses, lodging expenses, daycare or babysitting expenses for our kids, or any extra medical expenses that might arise out of treatment. Treatment makes you SICK, and it can require lots of other appointments and expensive tests to make sure that you're handling it all. It's not unusual for Lyme patients to spend $75,000-$100,000 out of pocket on treatment. We spent in that ballpark on my two-year treatment starting back in 2009. The only reason we were able to do that was because I had ownership in a business I was able to sell, and my husband worked two full time jobs the entire first three years of our marriage. It seems daunting, but I'm trying to remember that the Lord will provide. He always has, and He always will. Somehow. I'm also a big believer in that old adage that "the Lord helps those who help themselves," so we're praying hard and trying to get creative.

3) Continue On with Life Until Mommy is Better
The third thing we've got to figure out is how we do this while my husband stays in school. My husband is just finishing up his first year in Veterinary Medicine. It's a four year program, and it's all or nothing. If he had to withdraw from school for any reason, he would have to reapply, start over at square one, and we lose all the time, effort & money we've spent on this first year. Withdrawing from school is simply not an option for us. Having said that, it's going to be a tricky thing to coordinate me getting treatment, (and possibly being bedbound a great deal of the time it's going on) Bryan continuing in graduate school, getting the kids taken care of, and maintaining our life (bills, housework, etc.) all at the same time. When I first found out about Lyme Disease, and started on treatment, I was a single girl with a good job, but other than that, not many responsibilities. Treatment was hard, but I didn't have anything else to worry about but getting better. Now, my family is a huge concern to me.

All these things have added to the mix of things we're trying to figure out. At first when we realized that I was probably relapsing, I was not in a good frame of mind. I cried a lot and yes, I felt sorry for myself. And I worried about all of this stuff. There are so many unanswered questions. But for the last couple of weeks I'm in a better place, realizing that somehow it really will work out. I also had the realization (once again) that THIS IS IT. We each get one shot at life, and I'm smack dab in the middle of living mine. Whether I like everything about how it's playing out or not, this is my life. I can spend it being angry and bitter about things over which I have no control, or I can choose to focus on all the wonderful things I have in my life, and make the most of each day, in spite of what might be going on. I tried really hard to focus on those things the last time around, and I believe that it made a big difference. Lucky for me, I have a wonderful husband who also helps me to focus on those things. We are also blessed to be surrounded by wonderful family and friends, and with the Lord's help, we will figure it all out.

Why the Lyme Controversy?

There could be an entire blog devoted entirely just to this subject, but I'm going to be lazy and give you my take on it, then just link to some of the best explanations of it that we've found over the last five years. So here goes: It's a very complex discussion, but what it all boils down to is that the medical community is divided over whether or not, once a person has been infected with Lyme Disease, and then treated with 2 to 4 weeks of antibiotics, it can still exist in the body as an active infection. Some doctors are absolutely adamant that it can't; some are absolutely adamant that it can. So the 64-BILLION-Dollar question is: Does Chronic Lyme Disease exist? Obviously, as someone that's been dealing with it for the past 10 years, YES. I believe it does exist.

But it's not as simple as that little question. What started with this basic debate, has grown into an all-out war, where the doctors that are actually successfully treating patients for Chronic Lyme Disease are being ostracized, picked-on, and punished, and in some cases, such as the case of Dr. Joseph Jemsek of North Carolina, they are not only losing their licenses but also their livelihood. Dr. Jemsek lost his license to practice and was then sued by BCBS for 100 Million Dollars, following which he had to declare bankruptcy. You can read his closing remarks to the NC Medical Board, just before they pulled his license for treating Chronic Lyme Disease, here. His story is detailed in the Lyme Documentary Under Our Skin. It all sounds absolutely crazy, but it really is happening. The important thing to remember in all this maelstrom of arguing, egos and money, is that there are patients involved. REAL PEOPLE with REAL PAIN, and very REAL ILLNESS that are being overlooked, ignored and downright discriminated against.

I was diagnosed with Lyme Disease in January of 2009, and I have positive blood tests to prove it. I spent six weeks in New England in 2003 and got home to a large red rash (non-bullseye) that appeared three days after returning from Boston. After five and a half years of mysterious symptoms and continuously declining health, I finally found a doctor who would help me. After undergoing almost two years of combination antibiotic therapy, I began to feel that I was getting my health back. Even though you would think I have a believable case of what is called late disseminated Lyme Disease, living in Utah has made it next to impossible to find an LLMD, or any doctor somewhat knowledgeable about Lyme. Doctors don't believe that Lyme exists in Utah, and apparently must also believe that if you are currently living in Utah that means you've never been anywhere else. If it didn't have such huge implications for my life, it would almost be hilariously funny. Almost.

When I became pregnant we had concerns about my lingering bouts with severe fatigue (my most debilitating symptom thus far) and also the possibilities and implications of Lyme Disease for our baby. My husband and I just wanted to find a doctor that could be at least sympathetic to what we were dealing with. But upon trying to look for an OB-GYN that was at least aware of Lyme Disease (we weren't looking for someone to treat Lyme Disease, we just wanted a doctor that was aware of it) we were informed by a family friend who is also a Nurse Practitioner, NOT to tell anyone that I had Lyme Disease or nobody would take me on as a patient. Um, excuse me....WHAT?!?

This is the REALITY that those of us with Lyme Disease, no matter where we're at on our journey with it, are faced with everyday. How can I have an illness that I live with every day, that affects my life, my family, my ability SO much, and have to HIDE it from my medical doctor in order to have the privilege of being seen as a patient? How can this situation happen in this country, where we are supposed to have the BEST -- albeit flawed and expensive -- but the BEST medical care in the world? This is one of the reasons that dealing with Lyme Disease is so difficult and so isolating. In addition to your serious physical ailments, you've also got to worry about trying to find a doctor who will treat you. In order to get treatment four years ago, I traveled from Salt Lake City, Utah to Seattle, Washington every 8 weeks to see an LLMD, a Lyme Literate Medical Doctor.

It's very difficult to begin to explain the nitty-gritty nuts and bolts of the situation, but we've found a few articles that do a pretty good job. Here are a couple of them:
http://www.columbia-lyme.org/patients/controversies.html
http://www.jemsekspecialty.com/twostandards.php

I also found this series of news stories from Lynchburg, VA on it, and thought the reporter did a good job of laying it out in a pretty clear, concise way. Again, it's not a subject that can be completely and effectively communicated in one sit down conversation, but this does a good job of scratching the surface. Each of the clips is only a couple minutes long:

The Lyme Controversy Part I:

 

The Lyme Controversy Part II:

 

The Lyme Controversy Part III:

 

Here's a clip showing the Lyme controversy playing out between a study published in the New England Journal of Medicine, and a study by Columbia University published in the medical journal Neurology, showing opposite outcomes:

 

For a more in-depth (but again, brief) look at the controversy you can also watch the Lyme Documentary "Under Our Skin" in it's entirety for free at http://www.hulu.com/watch/268761.

Supporting Someone with Lyme Disease

Lyme Disease affects each person individually, but there are some experiences that are common among most who suffer from Lyme Disease. If you have a friend or family member with Lyme Disease, THEY DESPERATELY NEED YOU! By doing your best to understand their plight, you can provide them with the love, validation, understanding and support they need to be successful in their treatment process. So first of all, thank you for taking the time to read this post! The very fact that you are interested enough to find out more (for them) makes you a rock star in my book.

I believe that to be able to fully support someone with Lyme Disease, it's essential that you educate yourself about the basics of the illness, what it is, what it does, how treatment works and how it's likely to affect your friend. Those specific things you need to KNOW are all topics we'll cover in Lyme Support 101. For today, I want to focus on some specific things you need to DO to support your friend or family member struggling with Lyme Disease.

1) Listen to them. When your friend is hurting and needing to share their massive burden with someone else, don't trivialize their monumental struggle by offering well-meant but ill-timed explanations about how they should try to think about other things, focus on the positive, or how they should be grateful they're not worse off. While it is extremely important to be positive, it doesn't help anyone to completely ignore serious, life-altering problems. Lyme Disease is life altering in every sense of the word, and throughout your friend's struggle they will experience every stage of the grieving process, and probably over and over, given the length of time that most people deal with this illness. Feeling constantly shut down in your efforts to communicate and share your heavy burdens with others is extremely isolating. So too, when you're dealing with something as physically, emotionally, financially and socially complex and draining as Lyme Disease.

2) Ask Questions. As you're listening to your friend's feelings of grief, sadness, anger, disappointment or fear, ask them about why they feel the way they do. What do you miss most about being healthy? What is most frustrating about your daily life right now? What is most difficult for you? What are you most fearful of? These types of questions show that you are not only hearing what your friend is trying to communicate, but they may also help your friend to feel understood, validated and supported. It also gives your friend an opportunity to verbalize heavy emotions that they may have been experiencing thus far alone. Sharing those difficult emotions with a trusted friend can sometimes go a long way to helping to lift them or at least, make them lighter. Don't be surprised or scared if there are some tears involved, here. Remember, people suffering from Lyme Disease have usually endured years of being told there's nothing wrong with them, all while experiencing an ever increasing decline in physical and mental ability. They have a very real disease that is not accepted by half of the medical community. They have endured isolation and even ridicule for a very long time, and have a great need to feel understood and validated, whether they recognize it or not.

3) Stay Present in Their Life. Call your friend, (realizing that they may not answer the phone much, depending on where they are with their illness) drop by, send a card or care package. Because Lyme Disease can be so incredibly isolating, your friend needs you now more than ever. Recognize that they are probably not in a place to reciprocate your efforts, but in true friendship you shouldn't be keeping score anyway. They need to know that you are in their corner. They are in the fight of their life and they need to feel your presence and strength. Even if you are not able to have frequent conversations with them, let your friend know that you are thinking, praying and pulling for them.

4) Remember They Are NOT Ignoring You. One of the saddest realizations for me, was how many "friends" completely dropped out of my life when I became so terribly ill with Lyme Disease. I was totally bed-bound 95% of the time; I was literally struggling to get through each day, with a totally changed diet, a medication schedule that entailed taking 84 pills spread out over 8 different times throughout the day, and feeling wayyy sicker than I had before I started treatment to get better. My social life was suddenly at the very bottom of my priority list. This is true of so many with Lyme Disease. And yet, as humans we are social creatures, designed in a such a way that most of us need and depend on regular, positive interaction and communication with family members and friends as a consistent part of our healthy lives. This applies even more when you're fighting a terrible illness -- except that many times a person fighting Lyme Disease has been so debilitated that they are simply trying -- literally and figuratively -- to put one foot in front of the other. Don't take it personally when they aren't as social, aren't as available as they used to be or seem to completely drop off the planet altogether. Make yourself available to THEM. This doesn't mean that your social life has to completely change because theirs has, but you could set aside a Friday night or Saturday afternoon every few weeks to check on your friend.

5) Adapt Activities to Their Needs. Your friend's life has been completely turned upside down by this illness. Help them keep some normalcy by adapting some activities to their new "normal." If your friend is too sick to go out with the girls, plan a girls night at home, where your friend can stay in bed, or at least rest on the couch, while still enjoying, and being strengthened by the fellowship of her friends. When I was very sick and on treatment, a wonderful friend came over and did my hair and makeup prior to taking me out for a few hours in a wheelchair. The idea of doing my hair and makeup seemed too physically exhausting for me at the time; but instead of just offering to take me out for the afternoon, (which I would have declined because of the effort of trying to be presentable) she was sensitive enough to ask if I would also like some help getting ready. Be sensitive to the fact that sometimes, they may be too sick to do much of anything. But other times, they still really need a social life, and they need to get out in the sunshine and breathe some fresh air. Get creative about how you can plan activities that can help your friend to remember and experience happiness and joy, even in the midst of so much difficulty.

6) Be Patient. Remember that your friend is fighting a serious bacterial infection that is wreaking havoc all over her body, including in her brain. Inflammation caused by the bacteria in her brain causes lapses in short-term memory, word recall and other forms of higher brain function. Be patient when your friend forgets your birthday party, or the lunch you had planned; Recognize that even when she remembers, she may not be able to be there because of the many physical ailments she's dealing with right now. Be patient when she does remember something you've got planned, but cancels at the last minute yet again. It's probably last minute because she was really hoping that this time, she would feel well enough to make it, and then realized at the last minute that there was just no way she could physically do it; Be patient when she talks slower than usual. Be patient when she ends her thought mid-sentence or can't seem to be able to find the words she needs to articulate her thought. Be patient if she doesn't seem to be as well-rounded as before; Try to remember that this illness she's dealing with is something that she deals with every second of every moment of every hour of every day. It can feel all-consuming, which can be annoying to those around her, particularly close family and friends; But remember that while it may be an annoyance to you during your brief conversations, this is the stark reality she is constantly faced with and cannot ever get away from. As a good & trusted friend, share it with her, and try to be patient.

7) Be Observant & Helpful. Your friend with Lyme Disease is struggling so much more than will be outwardly apparent or visible to the casual observer. When your life has been up-ended by Lyme Disease its like adding insult to injury that you can sometimes no longer do even the simplest of daily tasks, like running errands, cooking, cleaning, grocery shopping or organizing your home or life. If your friend is like most people, they will have a difficult time asking for help. Look for ways that you can help where there's an obvious need and then be direct. Don't leave the burden on your friend by saying "Let me know if I can do anything." Ask direct questions. Does your friend need any prescriptions picked up from the pharmacy? Would she like the living room vacuumed? The dishes done? That pile of laundry washed and folded? Are her kids taken care of? Does she need help re-filling all those medication trays or scheduling her next dr. appointment? Has she got a ride to her next appointment? Hopefully your friend has people around her helping with all of these things, but maybe not, and maybe you're one of those people that she can and needs to be able to count on right now. Most people on treatment for Lyme Disease will at some point during their treatment (or for most of it) be too sick to drive; too sick to stand and occasionally even too sick to sit up in bed. If you were that sick, what would you need help with?

8) If You Are Going to Ask Them How They Feel, Be Sincere in the Question. Because Lyme Disease can affect all areas of the body, and do it simultaneously, it's not unusual for Lyme patients to experience and endure upwards of 20 to 25 different physical, emotional, psychological and cognitive symptoms in any given day. Lyme has over 100 known symptoms and sufferers can experience anywhere from 6 to 40 symptoms simultaneously. If you ask them how they feel and they rattle off 5 or 6 different ailments, chances are they're holding back and only listing the worst ones for that day. It's very hard to be honest with people when you have Lyme Disease, because you become acutely aware of the fact that most people just think you're whining. This feeling is reinforced by the fact that your friend has probably gotten that attitude from many doctors on their journey with Lyme if they've had it for any length of time. This is where that education I mentioned at the very top of this post comes in. The more you understand about Lyme Disease and how it can affect your friend, the better equipped you will be to really understand and sincerely want to know how they are feeling. This extra effort, insight and caring attitude will mean the world to your friend.

9) Help Them to Stay Connected to Life Before Lyme. This can be extremely difficult to do, but it's so important. Talk with your friend when they want to talk; Listen when they need to cry; And then remember that amidst all of the chaos of the current situation, your friend needs a life preserver of humor and of hope. Being able to laugh about shared memories, fun adventures and even crazy mishaps that took place before all this started, is really important for helping your friend to keep their spirits up. Laughing is therapeutic for anyone, and being able to think about all those fun and wonderful memories can help to remind your friend how sweet life can be, and that it can be sweet once again. Bring an old photo album full of all those hilarious old hairstyles; laugh about those embarrassing moments. Revisit the fun of the past, and then help your friend look to the future. Plan adventures for the months ahead; help your friend be creative in looking for specific ways to tailor those adventures to their unique needs of the present situation. Help them to begin a "bucket list" of things they want to do once they get better. Remembering fun times from the past and then planning fun adventures for the future helps to bring perspective, and can provide powerful, positive inspiration on which your friend can draw on their most difficult days.

10) Become a Lyme Advocate. This doesn't mean that you have to attend protests or post the latest Lyme articles to your facebook page; It means that you should become an advocate for your friend or family member that is suffering from a very real, very debilitating disease that is a political illness as much as it is a bacteriological one. Educate yourself about Lyme Disease. Learn about the controversy, learn about how it can affect the human body, and learn about how it is treated. When you're with other friends or family and the subject comes up, share what you've learned with others, and always speak up for your friend. Educating yourself about this illness may also help you to protect yourself and your family from an epidemic that nobody's talking about; and the more you know, the more you can also help to educate and protect others.

Thank you for taking the time to read through this post. Your efforts to better understand and support a friend or family member with Lyme Disease will go a long way to helping them to recover and have a successful outcome with their treatment. Anyone battling a major illness, no matter what it is, needs to feel supported, loved and cared for.

Babesia and Lyme Disease

When I was first diagnosed with Lyme Disease, I also tested positive for six other co-infections commonly carried by the same ticks that spread Lyme. Co-infections are separate, potentially serious infections that can be parasitic, bacterial, viral, etc., and are often transmitted to you via the same bite that gave you Lyme Disease. Co-infections make Lyme even more complicated and difficult to treat, because many times they can be responsible for causing bigger problems in the body, or exacerbating the problems already caused by Lyme Disease. Additionally, because it's working so hard dealing with all these different infections, the immune system can become overwhelmed and unable to effectively protect the body from any of them. When I first started treatment, my doctor explained that sometimes it's necessary to identify and treat your co-infections before you can have success in treating Lyme Disease.

In my case, we were concerned specifically with my worst symptom, severe and debilitating fatigue. When I use the word fatigue, I'm not talking about being tired, although you do experience sleepiness as well, because of the insomnia and other problems caused by Lyme. But debilitating fatigue has little to do with being tired. When I use the words debilitating fatigue, I'm talking about not being able to function. It's a constant feeling of having lead weights attached to your arms and legs, making it extremely difficult to move. When it was discovered that I had two different strains of Babesia, my doctor knew that while Lyme Disease does in fact cause debilitating fatigue all on its own, the level of fatigue I was experiencing was probably made worse by the Babesia infection. So we worked to clear up the Babesia.

What is Babesia?

 Many people have never heard of Babesia, but it is a relatively common tick borne infection in the world of Lyme Disease. Babesiosis is a parasitic protozoan infection. Babesia Microti is the most common species, and most cases worldwide are reported in the United States. Simply put, Babesia is an infection of the red blood cells. Upon infection, these little invaders cause lysis or rupture of the host's red blood cells. Red blood cells are essential, because they are responsible for transporting oxygen & other nutrients throughout the body. As the infection takes hold, the little parasites reproduce as quickly as possible and as red blood cell depletion increases, they actually begin to deprive their host of oxygen -- which causes extreme, debilitating fatigue.

Transmission of Babesia

While most cases of Babesia are caused by infected tick bites, there are documented cases of transmission via blood transfusion. I was surprised to read that it is actually THE most common disease transmitted via blood transfusion. By the way, this is a HUGE problem because so many infected people out there have no idea they have it...and may continue to do their civic duty by donating blood. So far, blood banks are not screening for it, although there are some experimental screening tests being used. Blood banks also don't screen for Lyme Disease.

In my opinion, it goes without saying: if you have been diagnosed with Lyme Disease and/or any of it's co-infections, you have a moral and ethical obligation NOT to donate blood, plasma or organs. Additionally, I was also told by my doctor that I should remove the "DONOR" designation from my driver's license. If you have Chronic Lyme Disease, where the spirochetes have had the opportunity to make themselves comfortable in all areas of your body - including all your organs - you could pass it on to the recipient of any donation.

Lifecycle of Babesia

Symptoms of Babesia

The symptoms of Babesia seem to be as generalized and vague as those of Lyme Disease. They are listed as flu-like symptoms, including fatigue, fever, malaise, chills & sweating. Most LLMD's describe Babesia as being a "Malaria-like" infection, and in fact, the two look so alike under the microscope that it is said to take a well-trained eye to recognize the differences and diagnose correctly. At my first visit with my LLMD, she informed me that the strange fevers in the evening and night sweats I reported were probably a result of Babesia...that was a revelation to me, since I had been to several doctors about those specific symptoms and each had looked at me like I was crazy. In the early stages of my illness, over the first year or two, I would frequently have low-grade fevers that would come on in the evening and last only a couple of hours. It generally happened 3 or 4 times a week. I also had frequent night sweats, where I would wake to my bedding & clothing being drenched. When my Lyme doctor was not only NOT surprised to hear of these strange symptoms, but also very familiar with them, I almost started to cry right there in her office. I was so relieved to finally have an explanation for so many of the strange and life-altering symptoms I'd been experiencing. The destruction of red blood cells by the Babesia is also a very easy explanation as to why, whenever I've had blood work done over the past 10 years, I'm always told I'm severely anemic. Not surprisingly, none of the doctors that rattled back to me all my "normal" blood tests ever thought there was a need to look into what might be causing the severe anemia.

Red Spots of Babesia

Another strange but seemingly common symptom or side effect reported by those diagnosed with Babesia are tiny red spots or dots called petechiae. They seem to show up mainly on the trunk and thighs. Many report first seeing them while on treatment, and some believe that it is actually a herx reaction to treatment. There doesn't seem to be much information into how or why these little dots appear, but they do seem to be very common among those undergoing treatment for Chronic Lyme Disease and Babesia. This certainly has been my experience. It's important to note, that lots of people have a few of these little spots here and there, and that doesn't mean you've got Babesia. I had a few before all of this started. But in my experience, at least, these spots showed up in droves all over my chest, belly and back while I was on treatment for Lyme & Babesia. Examples are pictured below.

Babesia is a complex illness in and of itself, and as a co-infection, only adds difficulty to the puzzle that makes up Chronic Lyme Disease. Current treatment recommendations include oral and IV clindamycin and oral quinine. My doctor prescribed a combination of medications for the duration of my treatment, and I found much relief from my Babesia symptoms while I was on Mepron, (Atovaquone) an anti-malarial drug. It was magical for me, however it was extremely expensive, so we also tried Alinia as a less-expensive alternative, and I had pretty good results with that as well. You can read more about my experience here. If you have not been tested for co-infections, but have experienced some or all of the symptoms listed above, it's worth a discussion with your LLMD. If you're going to an LLMD, chances are they've already discussed it with you!

For additional information on Babesia, visit http://aldf.com/Babesiosis.shtml