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.

New Study: Lyme Bacteria Doesn't Need Iron

This is actually information that a friend shared with me on facebook, and it was so interesting, that I had to share it here! So, a little disclaimer: I did NOT write this, and I am not taking credit for it.

The links provided at the bottom talk more in depth about the specific studies. Basically, this new research has shown that Borrelia Burgdoferi (the Lyme Disease bacteria) is now the ONLY KNOWN LIVING ORGANISM to exist without iron, a metal that all other life needs to make proteins and enzymes. This could potentially be a huge breakthrough and just goes to show how advanced and complex this pathogen is. The study was published on March 22, 2013 in the Journal of Biological Chemistry.

Credit: CDC/ Claudia Molins photo: Janice Haney Carr.

"All known organisms need iron to survive. All except one - Borrelia burgdorferi, the bacteria that causes Lyme disease, has evolved to use manganese instead.

 

For almost all organisms, iron is essential in processes like making new enzymes and other proteins. Perhaps the most obvious example is its role in haemoglobin, the oxygen-transporting protein found in the red blood cells of almost all vertebrates. Researchers knew that the bacteria B. burgdorferi did not need iron, but have now discovered that it requires high levels of manganese instead.

The bacteria's use of manganese rather than iron helps explain how it can evade the immune system. One of the immune system's responses against invaders is to lower the amount of iron in the blood. This starves the pathogen of the iron it needs (as well as making us feel terrible) and works against almost every pathogen. But if the invader doesn't need iron, like B. burgdorferi, this attack is quite ineffective.

Antibiotics are currently the only treatment for Lyme disease. Penicillin is generally effective if Lyme disease is caught early, but it works by attacking a bacterium's cell walls - something certain forms of Borrelia don't have. The team behind the study hope knowledge of manganese's role will aid the manufacture of new treatments.

"We'd like to find targets inside pathogenic cell that could thwart their growth," Valerie Culotta (John Hopkins University Bloomberg School of Public Health and involved in the study). "The best targets are enzymes that the pathogens have, but people do not, so they would kill the pathogens but not harm people."

The bacteria's manganese mechanism could be a promising target, and the team's next plan is to map the bacteria's metal-containing proteins and find out how it extracts manganese from its environment. 

For more information, visit:
http://www.livescience.com/28120-lyme-disease-manganese.html

http://phys.org/news/2013-03-scientists-reveal-quirky-feature-lyme.html

Dr. Phil Tackles the Great Lyme Debate

UPDATE: For some reason, when I first posted this, I only included two of the three clips of the segment. I have since found a complete clip, and I'm updating here for accuracy. Sorry about the confusion. I'll blame it on Lyme brain. ;)

 

Last year, the Dr. Phil show did a segment on Lyme Disease. It's interesting to watch. The entire segment is 18 minutes long. The third clip is the "after show" with Dr. Phil and his staff discussing how it had gone. 

 

 

I am heartened to see that America is starting to talk about Lyme Disease. Aside from all the controversy and political drama, Dr. Phil probably had motivation to do this segment because one of his Senior Producers, whom he has worked with since the beginning of the show, contracted Lyme Disease, and having known her a long time, he saw how it affected her over several years, along with her difficulty in getting diagnosed and properly treated.

 

An up-close-and-personal example is very effective in illustrating the seriousness of this illness. Unfortunately, I think that's probably the only way this disease is going to continue to come out of the shadows and into the full light of day -- eventually getting the awareness, funding, research and public safety campaigns that it warrants and rightfully deserves. I believe the Lyme Literate Doctors - whose practices are overflowing with patients that have been debilitated by an epidemic that is being ignored - when they say that Lyme Disease is the next big epidemic after AIDS. How many people are going to have to get sick before public outcry reaches a level that will bring about the change we need?

 

Dr. Phil's observation during the after show might just sum it all up: "Well, I thought we missed a big element, just because of time. And that is the political/financial/insurance aspect that impacts diagnosis. Because, if the bill payers can decide this stops at 30 days -- this disease doesn't exist after 30 days -- they save billions of dollars. There's a conflict of interest where you, you've got people that are lobbying to pigeon hole something, and they've got a vested interest in the outcome of that debate." Well said, Dr. Phil. Well said.

 

If I've piqued your interest or curiosity, you can read more about the great debate in my recent post: Why the Lyme Controversy?

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.

Lyme Disease Article in Great Falls Tribune

There was a great article in the Great Falls Tribune this week on Lyme Disease. You can read it here. Great Falls is a city in Montana, nestled in a part of the country that's not supposed to have Lyme Disease. I thought the article does a great job of laying out the facts about Lyme Disease and the many controversies surrounding it. It's worth the read if you or someone you know has been affected by Lyme Disease.

The History of Lyme

While we tend to think of Lyme as a relatively new disease, it has actually been written about in European medical journals since 1883, when it was first described by a German physician. The characteristic "bulls-eye" rash, (which is probably the most widely-known symptom of Lyme Disease) was first documented by a Swedish physician, Arvid Afzelius, in 1909. And in 1921, the first medical reports linking swelling and joint pain with what is now known as Lyme Disease were published, at the same time speculating that ticks may be responsible for transmitting the illness. Evidence was found throughout the 20's and 30's drawing connections between the disease and joint, neurological, heart and psychiatric problems.

In the United States, Lyme appeared on the medical map with the first cases originating in the mid-1970's in a small town in New England called Lyme, Connecticut. At first, there were 39 children and 12 adults from this area that were diagnosed with what was then called "Lyme arthritis," a mysterious swelling & joint pain in the knees, generally accompanied by headaches. When a local Mother, Polly Murray, noticed that many children in the neighborhood seemed to be having the same symptoms as those going on in her home, she contacted the local health department. And thus we have the formal recorded beginnings of Lyme Disease in the United States.

In 1978, a researcher from Yale University, Dr. Allen Steere, suspected that the symptoms these patients were having were somehow related to tick bites. In 1982, while investigating an outbreak of Rocky Mountain Spotted Fever, Dr. Willy Burgdorfer discovered the actual bacteria, a spirochete that would be given his name, (Borellia Burgdorferi) that causes Lyme Disease. His research was able to prove that it wasn't the bite itself that was causing the symptoms, rather the presence of the Bb bacteria that was transmitted to humans when tick bites occurred. His important research was also able to link many of the infections that we now know as co-infections to tick bites as well.

GlaxoSmithKline came out with the first approved Lyme vaccine, LYMErix in the late 1990's. Although after much controversy, including lawsuits brought by claimants who had never had Lyme symptoms until after having the vaccine, it was pulled from the market. GSK cited poor sales as the reason for pulling the vaccine. After immunization many formerly healthy individuals developed what was referred to as "autoimmune" arthritis, and mysteriously also developed other symptoms of Lyme Disease. There is currently no Lyme vaccination available and I would recommend a great deal of caution if one is approved in the future. On a personal note, given the nature of spirochetes, I would be totally against ever allowing anyone to inject me or a family member with anything referred to as a Lyme vaccine!

The Infectious Disease Society of America came out with it's current Treatment Guidelines for Lyme Disease in 2006. The guidelines have added to the controversy by making it more difficult for doctors to diagnose and treat Lyme patients. The guidelines basically state that Lyme Disease can be treated effectively with 2-4 weeks of antibiotics, but that anything beyond 28 days provides no additional benefit to the patient, and in fact can be detrimental. The International Lyme and Associated Disease Society have come out with their own Treatment Guidelines for Lyme Disease which have taken into consideration the world-wide body of literature provided by physicians that are successfully treating patients with Lyme Disease, using combination antibiotic therapy, or long-term antibiotic therapy. The divide over Lyme Disease in the medical community continues to grow. Patients are caught in the middle, and are the big losers at the present moment, since many have to search for months, sometimes years, and in many cases travel out-of-state to find a doctor willing to treat them.

In 2008, Open Eye Pictures released it's Lyme Disease documentary, Under Our Skin, hugely successful at film festivals around the country. Since then, public and private showings have been raising awareness. Many Lyme patients and advocates have taken to the internet in an effort to spread awareness and aid in prevention as well. As the debate rages on, the history of Lyme Disease is still being written. There is still so much to be learned, so much that we desperately need to know about this debilitating illness. For more information on the great Lyme debate, check out Why the Lyme Controversy? a post from earlier this month that includes videos and other articles discussing the controversy.

The Lyme Lie...Not Just in the U.S.

It's amazing to me that the Lyme controversy is going on all over the world...WHAT IS GOING ON?

 

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

That Little Black Rain Cloud in the Background

One of the hardest things about Lyme Disease is that even if you are lucky enough to successfully complete treatment and reclaim your life, it feels as though, somewhere in the background, constantly following and hanging over your head is this little black rain cloud. While it's little and very often unapparent to even close family and friends, it's always there...the possibility that your body may not be strong enough to continue to keep all that nasty bacteria at bay, and your active Lyme Disease will return in full force.

When I was able to wrap up my treatment in the fall of 2010, we knew that a relapse at some point was not only possible, but was in fact, very probable. If you have followed my blog you're probably aware that I, like so many people suffering with Chronic Lyme Disease, went for five-and-a-half long and painful years before I was finally steered in the right direction, (NOT by one of the myriad medical doctors that I had seen for my ever-declining health during all that long time,) but by a fellow Lymie, who herself along with her husband had been suffering with Lyme Disease for years. I was one of the lucky ones, and my test results were positive. This helped me immensely in terms of moving forward with the very expensive and difficult treatment process.

I am a huge believer that when it comes to major, life altering and chronic illnesses, you've got to use several criteria in any decision making process regarding your treatment plan. For us, in addition to trying to regain my health, our quality of life as a couple and my quality of life as a person, (treatment is horrible, and in fact, in the short term, many times A LOT worse than just being sick,) and our financial health as a family.

While the LAST thing anybody wants to be thinking about while dealing with a life-altering illness is money, financial considerations are front and center for most of us facing a major illness. I would say that Lyme Disease is even worse than your average illness in this respect, because of all the politics and the total chasm that has developed in the medical community over whether or not Chronic Lyme Disease even exists. This argument among medical professionals has created a loop hole through which insurance companies are able to jump to avoid being involved in the EXTREMELY EXPENSIVE treatment for Lyme Disease. This leaves those of us who have watched our lives crumble in front of us wondering how we'll even begin to start to try to regain our health. Like so many people struggling with this horrible illness, money was also a factor in our decision making process back in 2010. I just could not imagine myself on antibiotic treatment (with it's massive physical, emotional & financial demands) for 5 or even 10 years, which is sometimes the only way people with Chronic Lyme Disease are able to keep their debilitating symptoms at bay.

Long story short, (and trust me, it is a VERY long story,) after five-and-a-half years of unexplained illness, and another two years of intense and difficult treatment, my symptoms finally began to subside. I discovered wonderful nutritional supplements that helped immensely in terms of energy, strength and general wellness, and in October 2010, I finally made the decision to move on with my life. The last two plus years have been wonderful, with barely any thought of Lyme Disease. I still had fairly regular bouts with fatigue and joint pain, especially if I wasn't careful about getting enough rest, or if I pushed myself too hard. But with only these two symptoms, I considered myself extremely lucky, especially considering the length of time I had been sick before getting adequate treatment.

During those two wonderful years, and while I was finally healthy and off antibiotics, we were able to have two beautiful babies, who are the light and joy of my life. If for no other reason, all the physical pain, mental anguish and financial drain of a long treatment process was worth it for these two wonderful kids...and PLEASE...do not comment telling me about how we should get them tested because they might have Lyme Disease. DUH. I haven't made it ten years into this illness without a full knowledge and understanding of all the implications it has for me and the people I love most in this world. Thanks. I'm serious...PLEASE do not comment about that. I'm really tired of being asked if I'm aware that I could have passed it to them. YES. I AM FULLY AND PAINFULLY AWARE. And, that was part of our educated-decision-making-process before we started our family. We are very blessed and for the moment they are both very healthy and very happy babies.

Fast forward to 2012, and we had a very stressful summer with a major move, our second baby due, and my husband starting graduate school in Veterinary Medicine all within a three-week time frame in August 2012. The baby ended up coming early and was actually born on the day he started classes. Needless to say, it was an extremely stressful few months, and being in school these past six months has not been any less stressful. My husband's studies are extremely demanding, which means I've had to be home with the kids almost 18 hours a day by myself. Translated: I don't get any rest. Couple this with the fact that we are living in a new town where we don't have much of a support network per se, and that has made it more complicated for me. Needless to say, I was not careful in thinking about or planning for the amount of rest my body requires to stay healthy.

In October, after starting to heal and feel better from the birth of our second baby, I really thought I was on the mend and would "bounce back" any time, just as I had done a couple months after our first baby was born. Well, in mid-November that little black rain cloud that I talked about at the beginning of this post came to rest directly above me, and I started noticing for the first time in over two years, obvious symptoms of my own unique brand of Lyme Disease. (Did you know that each of us Lymies has our own unique brand of Lyme Disease? Well, we do. And if you have Lyme, you know exactly what I'm talking about. LD expresses itself differently in each person it infects, but over time you start to be acutely aware of the ways it expresses itself in you.) These symptoms were different than the fatigue and occasional joint pain I have come to expect and adapt to. These were blatant, clear signs that those terrible little bugs were starting to be active in my body again.

My husband and I started trying to make some changes, but just didn't have a lot of options. Still, it wasn't an everyday occurrence, and we were hopeful that with some rest and a little TLC, things might resolve. In December I unfortunately came down with the flu, or some sort of nasty bug, which took me a full 8 weeks to finally get rid of. After that, for the last month, I have been fighting with a steady increase in both the number and intensity of my old, pre-treatment laundry list of symptoms. In true Lyme Disease fashion, there are also several new symptoms thrown in, and for the past two weeks it's been very difficult for me to get out of bed or off the couch. I am also currently dealing with 15-20 different symptoms on a daily basis. If you are struggling with Lyme Disease, you will know exactly what I'm talking about.

It's a terrible thing to have to type, and I'm too disappointed and scared to ever be able to clearly articulate how I'm feeling in words, (oh wait...that might be another symptom...ha.) But I think it's obvious that these little critters have made a comeback, and we're going to have to figure out what to do to try to pull 'em out of hiding and kill 'em all off...AGAIN.

I will be blogging once again, since for me it's a healthy release. I really think it's therapeutic, since it's the only time I get to share my true feelings and thoughts, uninterrupted. It's also nice to have a permanent record of all the ups and downs of this crazy illness. Ironically, about six months ago, I started working to transfer all my blog into a book, since this has been a major part of my life for almost a decade. I have always loved scrapbooking and photo books, and journaling is not my strong suit. I was actually delighted to re-read most of this blog and find the detail with which I recorded so many things. I'm going to have to draw on a lot of the positivity, faith and hope of four years ago for this new path ahead. Please pray for our family, and wish me luck!

And with that, my fellow Lymies...I'm back. :(