Thursday, June 7, 2012

Congenital Lyme Update: Happy News, Sad News and a Commitment

A long overdue update on our children...

Happy News
I am so overjoyed! It has been a long difficult year, but all of our hard work has paid off for our oldest, age 5. He is currently symptom-free!

We started right away with a gluten-free (GF), dairy-free (DF) and sugar-free (SF) diet. Well, we kind of suck at the sugar part, but we are mostly sugar-free. We did it a little too fast, however, and his system couldn't handle it. He has struggled with stomach pain from a young age and it continued through much of this past year, since our diagnosis. He even had a month of intermittent vomiting - only at night - over the summer, which resulted in an ER visit after he began vomiting blood due to a tear in his throat. To this day, we do not know what caused that.

A month or two into treatment, we were referred to an amazing woman who practices Chinese Medicine. She worked wonders for our son. It took time, but we were patient. She treated him with acupressure and herbal teas and made several diet recommendations, like no bananas or cold foods. In addition, we added in probiotics. He'd had issues with dairy for some time and we learned wheat had also become an issue, likely causing his chronic stomach pain. Slowly but surely, we saw a difference. He hasn't complained of stomach pain in a couple of months now.

Another big symptom he dealt with was joint pain. "All my bumpy parts hurt, Mommy," he would say. It would break my heart. From the moment he could communicate, he would talk about pain. My 5-year old had the joint pain of an 80-year old. "It's just growing pains," his pediatrician would say. I suspected otherwise. It would be another two years before I was diagnosed and we put the puzzle together.

We started with a short course of antibiotics, but decided to switch to herbal after ART testing and some intestinal issues. He used A-L and A-Bab for treating Lyme and Babesia. We continued probiotics, whole food vitamins, multi-vitamin, Vit D/Calcium for bone growth since we don't do dairy and Mila for nutrients and to mop up and take away the toxins. The joint pain persisted, worsening as symptoms do with Lyme treatment. I was beside myself. Finally, our Chinese Medicine doctor recommended an herbal treatment she had used on children in the past to help with inflammation. We started with a low dose, but it didn't touch his pain. So, she increased it to a more potent dosage. But, we only started with one that covered his upper body. One day, he mentioned his knees and ankles hurt. I inquired about his shoulders and elbows. He thought about it and said: "No, they feel fine." Eureka! On our next visit she gave us the higher dosage of the herb specifically designed for lower body joint pain. After a couple of months, we took him off of the herbs entirely and have not had a recurrence of joint pain since...even on days where he is a busy 5-year old bouncing off the walls.

One of the other things we learned from ART Testing was that our family suffered from mold toxicity. As a matter of fact, it was a bigger issue for us than Lyme. I can look back now and know why this is. A home we purchased just before his first birthday. We lived there for 3 1/2 years and we all got very sick there. This is also the home we brought our daughter home to the day after she was born. Removing ourselves from that sick building surely also played a part in our son's healing. But, if you know anything about mold, you know you can get even sicker after you leave because you become sensitive to other things, like chemicals. You also get much sicker much quicker any time you are exposed to mold. So, we are currently educating ourselves on mold. I'm learning there are many other places we may have been infected: workplace, car, homes of family and friends and so on.

Sad News
Our daughter is still very ill, but in a different way. She is healthiest on antibiotics. Since she was born, she has had one illness after another. She had a horrible rash all over her body from about 3-6 months of her life. She has struggled to gain weight and only just crossed 20lbs. Her 2nd birthday is at the end of this month. She fought chronic ear infections for a year before getting tubes in her ears. Even then, every time she'd go off antibiotics, a week later she would start showing symptoms of illness. She has barely slept through the night in her almost-2 years, except when on antibiotics. She eats better and gains weight when on antibiotics. She is happy and more communicative on antibiotics. She naps better on antibiotics. Off of antibiotics, she wakes up 2-3 times per night, sometimes with what others would call night terrors...but what I believe is pain. Now that she is older she will even say: "Boo-boo hurt me." She stops eating well, sometimes skipping two meals in a row. She drinks less. She is highly irritable and in recent months has begun screaming in pain in her car seat. We are heartbroken and frustrated to watch her go through this...and more motivated than ever to find out what is happening.

Recently, after a bout of strep, we visited a neurologist, recommended by her pediatrician. "I'm perplexed," he said. "Every symptom you are here to see me about has gone away with antibiotics. It seems to me like there is some underlying infection." This is...exactly. what. I. have. been. saying...for over a year now. Today we visited our local pediatrician, who is not a Lyme-Literate M.D. (LLMD), but is aware of Lyme and is very supportive. I finally feel like we are on the same page. They are testing her for many things...PANDAS/PANS (strep-induced; causes tics and OCD; often found in Lyme kids and sometimes parents), mycoplasma pneumonia, IgG/IgM/IgA and more. They are also checking her Lyme titers again and her white blood count as it was low in previous draws.

Our Commitment
We are elated that our son is healing and can enjoy his childhood as every child of pain and a strict med schedule. He'll have to endure a stricter diet than most, but it is for his own good and hopefully he will see it that way too...if not today, someday. We are committed to keeping him well, so that he can keep the edge on Lyme, co-infections, mold and anything else life throws his way.

We are sad that our daughter has suffered so much in her life already, but we are committed to changing that. I hope to have a more definitive diagnosis on what the underlying infection is by the end of the summer and a healthier, happy child by the end of the year.

We have endured a lot and I still have a long way to go in my own treatment, but we are so grateful for two strong, inspiring, amazing kids! And I am grateful for a loving, supportive husband. We still have quite a journey ahead of us, but we are determined to win it. We've downsized so that treating four people does not bury us financially. I continue to research the best options for care for our family, despite debilitating fatigue, muscle fatigue, brain fog and a range of symptoms too long to list that we make the right choices, especially for our children. Thank you to all who have supported us on this journey. Sometimes we feel like we are pinned to the ropes, but we commit to keep bouncing back again and again. The fight is far from over, but we are taking it one round at a time.

Friday, May 4, 2012

Happy Anniversary?

It has officially been one year since my Lyme diagnosis. It seems very surreal that a whole year has passed since hearing my doctor utter the words: "Oh, and you have Lyme." On one hand, I was relieved. My entire life I had struggled with one symptom after another, so that by the time I got to him, the list was so long I had to type it in a tiny font to fit it onto one page. The diagnosis meant: 1. I'm not crazy; 2. I'm not a hypochondriac; and 3. There is a name for what I've lived with for at least 27 years. Unfortunately, though, my diagnosis also meant something else: my two children were most definitely inflicted with this disease as well (or at least face serious health problems as a result of my illness.) There is no cure. There is only a hope for remission. I was devastated for my children.

For the past year, I have been laughed at by people in the medical community. I have been told I am just depressed and there is no way I could possibly have Lyme disease. "I would KNOW if you have Lyme Disease," my former primary doc scoffed. "Do you want me to write you a prescription for anti-depressants?" "Um. No, thanks. I have a CDC-positive test AND just about every symptom of Lyme. I'm pretty clear on my diagnosis." I haven't been back since. I guess it isn't his fault. Much of the medical community just isn't educated about this disease. But, it would be great if they could get it together sometime soon, because people are dying from this disease.

This past year, I have gotten rid of a symptom or two. And I have picked up many more. I've had difficulty walking to the point where I've needed assistance. I've had arthritic-symptoms so advanced that I walk like an 80-year old much of the time. I have lost a tremendous amount of flexibility and muscle control. And that is hard, especially for a yoga instructor who is teaching three classes a week. I've had days where my organs ache and my skin is so sensitive to the touch that I burst into tears when my daughter jumps in my arms. And other days when I am afraid I may have a heart attack. There are many, many days where I feel like I am going to pass out. I've had brain fog so bad that I've forgotten how to spell my last name (it's 5 letters...FIVE), what my Social Security Number is (I've known it by heart since college) and, most recently, how old my daughter is (she'll be 2 next month.) I walk into a room and not know why I'm there so many times in a day that it doesn't even phase me anymore. I often ask my husband the same question three or four times within as many minutes, and have no recollection of asking it, or getting an answer. Many Lyme fighters are diagnosed with Alzheimer's after Lyme bacteria has attacked the brain and caused tremendous memory loss. While I cannot imagine what it must be like to have Alzheimer's, it is clear my brain has not been spared. And it's scary, especially at 37 years old.

In the past year, I have taken oral antibiotics, IV antibiotics, supplements, probiotics, herbal treatments, anti-virals, detoxing treatments, nutritional IV's, lactated ringers and a laundry list of others. I have taken hundreds of detox baths and added edible clay and mila (chia seeds) into my weekly routine to help with the bacteria die-off. Green smoothies are a staple in our household now and they usually include some combination of celery, parsley, spinach, kale, carrots, beets, avocado, spirulina, flax seeds, acaia and some fruit to make it edible. I've gone gluten-free, dairy-free, yeast-free and somewhat sugar-free (but admittedly, I suck at that last one.) I've brought GF/DF pizza and cupcakes to birthday parties so my children don't feel left out. I've lost weight. My husband, diagnosed in November of last year, has lost even more. Concerned family and friends say we are wasting away. I say, we are eating what our body can handle (and what is good for our immune system) and maybe this is just our 'healthy' weight.

Over the past 12 months, I've seen friends and family come to our rescue. I've met some of the strongest people in the world through message boards and support groups; some of whom have become trusted friends. And I've been ignored by people who I used to call 'friend.' It has been an eye-opening experience in this way. People I barely knew, who I would call more of an acquaintance even, have been some of my biggest cheerleaders. It is true what people say. You really find out who your friends are when you are faced with something like this. I get it. What do you say? It's easier not to say anything. Plus, perhaps you did ask me once and I didn't shut up for an hour! I don't know how I would have handled a situation like this before my diagnosis. Now, I get it. And I plan to be there when I'm needed. Even when it is hard to be.

Also, I've learned what it is like to learn the Boogie Man is real. You see, there's a lot of scary stuff out there, folks. A lot of stuff I had heard of but didn't care to learn about until I was diagnosed. Stuff like mold. And parasites. And metal toxicity. And so much more that I will save for another post. You may call me paranoid. I prefer the term 'educated.' You see, Lyme weakens the immune system and opens the door to so much more. And what comes knocking is often times much worse than the Lyme itself.

Many, many people with Lyme have died or committed suicide just in the year since I was diagnosed. I have gone to bed some nights not knowing if one of my new friends, including a child, would make it through the night. It is truly heartbreaking.

In the past year, we have experienced the financial burden of four people treating a chronic, debilitating disease. We received gracious gifts from friends, family and perfect strangers through a fundraiser my dear friend Kathy put on for us, despite her own struggles with this disease. We moved from a beautiful 3-bedroom home to a 2-bedroom apartment, in hopes of getting ahead so that we can fight and so that we can take whatever this disease throws at us.

Lyme is a controversial disease. There are less doctors that believe in Chronic and Congenital Lyme than there are that do. The tide is changing, but we have a long way to go. So, patients of this disease research and research and research. They go to conferences, join groups, see hundreds of doctors and specialists....because not one treatment works for all Lymies. Every patient is different...different strains of Lyme, different co-infections, different toxicity issues (mold, metals, etc.) and so on. You find out fast, that even an LLMD doesn't always know what to do with you. They just throw stuff at you and see what works. So, we research. And educate ourselves. And become our own advocates. Because no one else will fight for you like you will fight for yourself.

This year, I have been...Angry. Sad. Depressed. Anxious. Withdrawn. Outspoken. Weak. Strong. Confused. Focused. Without Hope. Hopeful. And a million other things in between. It has been a rollercoaster.

People in the Lyme community call this rollercoaster a healing journey. I like that. It gives me hope. This has been a very trying year. But, we are taking it one day at a time. I don't see a light at the end of the tunnel yet, but you can't change a 27+ year trajectory in the course of 12 short months. I know many who have been treating for 8, 9, 10 years. Our mission has not changed. We will not give up. We will persevere. We will win one battle after another until we can make it through a day without a symptom in sight. And then we will find the strength to fight another war. A war that prevents people like us from getting the medical care we need. One that keeps hundreds of thousands of people suffering from Lyme - who have no idea what is wrong with them - because doctors are not educated enough to diagnose it. We will get the word out. We will shift the tide on this controversial disease. And hopefully it will not be too late.

 Thank you to everyone who has helped us on this journey.
We love you and are forever grateful for your love and support. You know who you are.

Monday, November 21, 2011

One Amazing Test

A few months ago, my friend Kathy over at Alter Everything told me about something called A.R.T.: Autonomic Response Testing. It was developed by Dr. Dietrich Klinghardt, a prominent Lyme doctor who was featured in the must-see Lyme documentary, Under Our Skin. It sounded pretty out there when I first learned about it. I mean, how much can you really learn from a cheek swab? But, Kathy's results were spot on. They nailed what her biggest health issues are, what medicine she was allergic too (before she showed signs of an allergy) and even pinpointed an issue dating back to childhood! I was convinced.

A few months later, thanks to a fundraiser created by Kathy herself, we were able to afford the test. I sent in cheek swabs, vitamins, medicines and paperwork for all four of us...even my husband, who had yet to be diagnosed. The results were nothing short of amazing. Not only did it find Lyme in all four of us, including my husband, it also showed mold and metal issues in all four of us. Interestingly, when I had a phone conference with the RN who conducted the test, Andreanna Rainville, she said Lyme really isn't our family's biggest issue! Mold and metals are. For Grayson, Babesia is also an issue (Babesia is a co-infection I am currently treating, so it makes sense that it showed up for him) and for Brian, Bartonella. For me, Viruses also topped the list. This information is invaluable, because I was able to take it to our doctor and we can now move forward with a treatment protocol that tackles our biggest issues.

In addition to the information about what our biggest health challenges are, the test also told us what organs are being stressed and what vitamins and medications are working for us and which aren't. It also told us what natural treatments would work for us, so Andreanna was able to give us a treatment protocol to get us started. On top of all of this important information, the test also showed I have been having trouble with one of my parents lately. If I had any doubts before, she convinced me with that one statement.

Current Lyme Tests only detect antibodies. And if your immune system is in the toilet, then you aren't going to show any. Plus, I've heard that they only test for 30 or so bands, but there are over 300. If that is true, the potential for false negatives is ridiculously high! There is a new culture test that came out recently, but unfortunately it is not available yet in New York or Florida. Plus, it is very new, so it is hard to know how successful it will be.

A.R.T. is a phenomenal way to find out what ails you and learn what you can do about it. I highly recommend it! If you are interested in trying A.R.T., here is what you need to do: 

1. Go to this site and print out the forms:

2. Fill out the forms and put them in a 5x7 envelope or bigger.

3. Take one each of your vitamins and medications, including refrigerated probiotics and put each one in it’s own Ziploc bag. I printed labels, but you could probably write on the baggie…your name and what the item is.

4. Pour a little bit of any liquid meds or supplements into separate baggies, write on them and then double baggie them.

5. Put the baggies in the envelope with the paperwork.

6. The next morning, BEFORE DRINKING OR EATING ANYTHING AND BEFORE BRUSHING YOUR TEETH…use a clean Q-tip and swab your cheeks really well. We did both sides of the Q-tip. Put it in a separate baggie, marked with your name and the date the sample was taken. Put this in the envelope.

7. Mail it to: Andreanna Rainville RN, LMP, 15229 117th Pl. NE, Suite A, Kirkland, WA 98034.

8. Wait, sometimes up to a month (she's swamped!) But, the wait is worth it! You can always email her to check on the status at by emailing Andreanna at

If you have any questions about A.R.T, please ask. I'll tell you what I know, or you can email Andreanna at the address above (#8.) I hope that, if you do get tested, it comes back clean as clean can be. But, if it doesn' least you know what you are dealing with...and steps to implement to get better.  

*IMPORTANT: This post discusses the person we used for our ART Testing. Andreanna is very busy and is sometimes very difficult to reach. There are many other practitioners who are trained in ART. Try searching for ART Testing in your area to see if there is someone close by. I am told it is even more effective if you actually visit the practitioner!

Friday, October 7, 2011

The Cord Blood Call

Yesterday I contacted the hospital where I gave birth to our daughter. While there, in June of 2010, I donated my cord blood. Recently, I was thinking about all of the blood I've donated over the years, worrying about all of the people I could have infected unknowingly. Then, I remembered about the cord blood and I was devastated. Surely it had been used by now! Finally, I contacted the hospital. They were very grateful and three different people I spoke with there asked how I was feeling and how treatment was going! The final person I spoke with said he would check to see if my cord blood had been viable and if it was and had not been used, he would dispose of it immediately. I will never know for sure if it was used or not, but I am hopeful that I caught it in time and a child will be spared from the nightmare that is this disease.

Friday, September 30, 2011

Planning for the Future

A few weeks ago, I wrote a post entitled 'If I Should Die Before I Wake.' It may seem morbid to some, but to me, it was a way to express some things that are important to me. Chronic Lyme Disease is unpredictable. Symptoms can come on suddenly and, in some cases, be quite severe. But, as important as it was for me to write that post, it is even more important to write this one.

You see, I may not feel well now, but I am fighting for my health and the health of my children, so that one day we can truly live. We're thinking positive. We're looking ahead. We're making plans for the future! And I've made a list (because I do that.) Here it is...

Make A Difference
When we get our family to a good place financially and our health is much-improved, we will help others whenever we can. I will be that anonymous person who donates $500 to a family in need. Or make dinner for a sick friend. Or host a fundraiser to help raise much-needed funds. Or send a note to bring some light to an otherwise dark day. I'd like to volunteer more and teach my children the importance of helping others. We have been so touched by the kindness of others and look forward to paying it forward a million times over.

We have an amazing family and we have been so grateful for the love and support they have given us through this ordeal. We will be there for them if and when they need us, but we also hope to spend more time with them, especially our awesome nephews! Family is so important and we want to treasure every moment we have with them.

Fight, Advocate and Educate
Most doctors are not educated on Chronic Lyme Disease and therefore many, many people are going undiagnosed or are being misdiagnosed with Alzheimer's, ALS, MS, Autism, Fibromyalgia, Chronic Fatigue Syndrome, IBS, Ulcerative Colitis and more. Claims from Lymie's are rejected by their insurance companies after 30 days of treatment. The exorbitant costs of treating this disease are bankrupting families, even making some homeless. Some just don't treat because they can't afford it. This is an outrage. I vow to fight with my last breath for an overhaul on how doctor's are educated on this disease, how patients are treated, how their treatment is covered and how people are educated about this disease. There is no reason for this disease to be as endemic as it is. Something must be done!

Take Less For Granted
Everything is relative. I get it. But, when you go through something like this, you start looking at life so much differently. You find the things that used to worry you seem petty and small. You start looking at people differently, wondering what battles they are fighting that would make them so angry or sad or distant. I know I'll have my moments when things get me down. But, I know in my heart that I am forever a good way.

Right now, it takes a lot of energy to talk and walk, let alone find the energy to laugh. Our kids help us in this area, but we still don't laugh nearly as much as we should. Laughing is therapeutic in itself, so I should make more of an effort. But, it is hard to muster joy when you feel awful! I know when I feel better, laughter will just come naturally. But, I'm putting it on the list anyway.

Travel has always taken a lot out of me. Chronic fatigue worsens when exposed to stress, pressurized cabins and altered sleep schedules. So, traveling is not always enjoyable. I look forward to the day when I can travel with my family and not feel worse than I do on a normal day. Japan, Ireland, Paris, Italy, St. John, Hawaii, Seattle, New York City...I'd love to take my children to all of them, plus more. And they would love a Disney Cruise, so I hope to get them on one before they are teenagers and it is no longer 'cool.' Right now, all of this seems so out of reach...physically and financially, but I'm putting it out there. Why not? Might as well DREAM BIG!

Don't get me wrong, I play with my kids. But I want to have the energy to run outside, play catch without getting winded and walk around the block (or across the room) without needing to sit down. I want the mental clarity to create stories, come up with fun games to play and help boost their imagination. Right now, they watch a little too much TV, but it isn't forever. Hopefully soon, we will be running and jumping and playing hopscotch and pretending to be pirates and creating more art projects than our walls can hold.

Enjoy The Arts
Plays, Dance Performances, Musicals, Concerts, Cirque du Soleil, Blue Man Group, Art Festivals, Museums...I love them all and want to introduce them to my children. There is nothing like a powerful performance to move and inspire you and I hope they can experience that magic!

I love to read! When I was younger, I would read book after book. As I got older (and sicker), reading became more difficult. I would find myself re-reading the same paragraph over and over and over again and not retaining anything. Or I would look at the page and all of the words would blur together. I miss reading...and right now that stack of books I've been meaning to get to will have too wait a bit longer. But, I will get back to it when I feel better and I can't wait to lose myself in them. Up first...Kingsolver's newest work!

Get Creative
I've always loved creating things. Just like with reading, however, brain fog, fatigue and shaking hands have taken this favorite pastime from me. When I feel better, I plan to make time for crafts with the kids, mosaics, dance lessons, Soul Collage, scrapbooking, art classes, photography classes, drawing and more. I think I will enjoy it even more because I haven't done many of these things in some time, but also because I worry a lot less about what people think. I feel my art would come from a much purer place and that freedom would make it so much more enjoyable.

Before my diagnosis, we weren't doing bad financially, but we weren't prepared for the financial nightmare that awaited us. Once we get on the other side of the never-ending medical bills, we will save, save, save. We need to. There is no cure for this disease, so we must be prepared to fight it as the need arises. Plus, the things on this list cost money and I don't want anything holding me back from my dreams...or my children's from theirs.

Face My Fears
Losing someone I love. Public speaking. Spiders. Heights. TICKS. When you have Lyme and co-infections, anxiety and paranoia come with the territory. But, they were some of my first symptoms, so I've had them for a looooong time. And let me tell is no way to live. I need to learn to let go of my fears and live in the moment!


I've learned that you don't get anywhere by playing small. And I don't go down without a fight. This is one fight I intend to win. So, get ready kids...things are going to get better. They may get worse first, but we are strong and we have a lot to look forward to!

Tuesday, September 27, 2011

Lyme Resources

If you are interested in learning more about Lyme Disease, please check out the links below. I will update this page frequently to include the most recent information available on Lyme Diseae and Co-Infections.

Lyme Disease Articles


If you have any other articles or resources you would like to recommend, please comment below!

Saturday, September 24, 2011

But, you don't LOOK sick!

Ask anyone with Lyme Disease and they will tell is hard for people to understand what we are going through, because...well, we don't look sick. At least not usually. Honestly, it doesn't bother me. I mean, if I'm going to feel like crap, I'd rather not look like it too. But, it does make it difficult, because on a day when I am in pain, fighting a sinus headache, having a major anxiety attack, experiencing shortness of breath, have intestinal cramps, feel like I'm walking through mud, can't focus on any one thing for more than 30 seconds due to brain fog and feel like I need a cane just to hold me up...people think I'm fine. It's totally understandable! I don't look sick.

Also, I do what I can to mask symptoms, which doesn't help people understand what I'm going through either. On a day when I am having difficulty moving, I may support myself with a hand on the wall as I walk. If I am teaching a class or having a conversation, sometimes I lose a word or stutter or say knee when I mean elbow. During these instances, I make a joke, and we laugh it off. If I'm tired (and it shows), a little Eye Creme goes a long way. Sometimes, though, symptoms are hard to hide. Like when I am in the middle of a conversation and I forget what I was talking about...mid-sentence. Or when I can't remember a person's name that I definitely should remember. Or when I can't breathe simply because I walked from one room to the other or bent down to pick something up. But, it's all good. At least I don't look sick!

Now, I'm out and about a lot. Between teaching yoga classes, taking my son to school, doctor's appointments, visiting friends and family, I interact with a lot of people each day. Often, someone will ask: "how are you?" To me this question presents a dilemma. I don't want to lie, but I also don't want to unload on anyone with the multitude of bad things that are happening in my body at that particular moment. Do they really want to know? Are they asking to be polite? Either way, what I'm going through is no fun, so hearing about it can't be much fun either. However, I could talk about Lyme for hours. HOURS. So, listener beware! Asking a simple question like "how are you?" can unleash an hour-long depressing rant about the politics of this controversial disease, how I can't eat anything I want to eat and my fears about my children's future as they fight this disease. That's what's weighing on my heart right now, so I can't help myself! Hmmmm. Maybe we should think of a safe word. You know, so in case I ramble on and on and you just want me to shut up. Or how about you just make up some excuse to get quickly as your house is on fire, or you just saw the bat signal.

I've had Lyme for a long, long time, so my 'normal' is anything but. To me, though, it's life. If I felt even half as bad as I do each day, I would think I was cured (forget the fact that there is no cure for Chronic Lyme!) Any relief from symptoms would be a tremendous gift. Ultimately, though, what we're working towards is the day when I don't look sick because...I'm not!