Things I Miss

In being sick for such a long time there are some things I discovered. I miss things. Not physical things but life things. Here are the things I'm missing after 3 years of dealing with Lyme and co-infections.

1. Making my own decisions. Oh sure I make hundreds of small decisions a day but in reality I've had much taken away. I had no choice but to give up my nursing career of almost 20 years. I miss the adrenaline rush and I miss helping people. Decisions should be mine.
2. I've had no real choice in my treatment plan. Even now, my LLMD tells me what she thinks is best, I may get a choice on which path but reality is if I don't do this, this disease might kill me.
3. What I feel I can and can't do on any given day. Somedays I feel well enough to venture to a store. Other days, putting on socks exhausts me. I don't get to decide that. My body does. I'm merely there to cooperate with it or suffer the consequences of poor self care.
4. Keeping a facade. Lyme patients have to have a facade. In a sense it keeps me sane because for a few moments I get to be normal and like everyone else. People look at me and say, "You don't look sick." Sometimes I am grateful for that. If I sit and think about the magnitude of this disease and what it's done to my family, life and relationships I can get very depressed. But my kids and husband need me and if I spend every waking moment crying I'm not much use to them. They do see me cry and struggle and see me at my most raw moments. But there is still life to live. My facade is holding up just fine thank you.
5. I miss thinking. Lyme fog is awful. Cognition is non existent at times. I live my life by sticky notes and wonder some days if my thoughts will make it from my brain, down my arms and onto the keyboard or paper. If it does-will it make sense? What did I forget today? I'm still volunteering at church and in the homeschool community (by computer mostly) because it keeps my brain active and people still value my opinions (I hope). It makes me feel like I'm still contributing in some way and that my brain still has a few active cells left.
6. Playing. I miss playing ball and running (any physical activity really) with my kids and being able to go see their activities.
7. Traveling. Anywhere.
8. Being spontaneous. Not that I was every really spontaneous. Those that know me know I am the well planned out girl. But sometimes it would be nice to just get in the car and go without having to worry about when the next dose of medication is due or to take the kids out for icecream instead of knowing that the trip will be too much for me. With being spontaneous comes planning ahead. I can't do that either because I never know how I will feel.
9. I miss my hobbies. Gardening especially. Digging in the dirt is very cathartic and meditative for me. Growing the food is providing something for my family.
10. I miss being trusted. Trusted to know that I was/am ill, trusted by my doctors, trusted by family and friends to know that I am making the right decisions for me at this very moment.

At this moment, it's all I can do.
Bev

To Thine Own Self Be True

I saw the Ophthalmologist in Boston on Monday. I was grateful to find him as he specializes in Lyme Vision problems. Might I add that 6 people in the waiting room also had Lyme. I had to sit through the rantings of the crazy lady next to me who insisted that Lyme doctors and all the patients with Lyme were "a cult." I wanted to whip out my MRI and show her my lesions. Actually I wanted to shove the MRI down her throat but instead I sat there and shook my head and bit my lip. It wouldn't have done any good to talk to this loon bin. Of course then she went on to say that she once had Lyme and took the IV antibiotics but they made her nauseous so she stopped. Nausea? Really? I would take a round of nausea any day over this. Then she went on to say that she was then diagnosed with Fibromyalgia and not lyme. Uh-huh. Good luck uninformed person-good luck to you.

 For quite a while I've had bad eye pain, blurred vision and horrible floaters. I haven't been able to drive in several weeks. The Lyme specialist suggested I go to Boston so another day off of work for my husband and a field trip.

I wasn't happy with the outcome. I feel like every time I go to the Doctors it's more bad news. After two hours of painful drops, dilated pupils, bright lights and flashes socked into my eyes, pressure measurements and photos of the back of my eyeballs...

His diagnosis was that I have retinal hemorrhages and small vessel disease. All of this is caused by still active brain lesions despite 5 weeks of IV antibiotics. He gave me the pretty pictures with hand written notes to bring back to my doctors. He also warned me that I would need months of antibiotics considering I had 4 tick illnesses. But I knew that.

I wonder how much less suffering I would have to go through had my doctors, maybe even one doctor just treated me appropriately with antibiotics or believed me when I didn't improved. I wonder if I would have brain lesions or would have lost my vision or the hundred other physical complaints I have. I wonder if I'll ever be able to run with my kids again or just take a walk with the dog or not be profoundly exhausted when I fold laundry.

To Thine Own Self Be True. I should have listened to that voice deep inside me who knew something was very wrong. I shouldn't have let doctors talk me into a diagnosis that I knew wasn't correct.  Lesson learned. To Thy Own Self Be True.

Lyme Lasagna

Lyme Lasagna. Sounds appetizing doesn't it? My Lyme story gets longer and longer with twists and turns and many layers...like a lasagna. One layer of the story doesn't work without the other.

I've finished week 2 of antibiotics and had my check up with the Specialist. I cannot convey the feeling of general crappiness that I feel. The Nurse Practitioner that I see was quite pleased with my Herx symptoms-herxing means the antibiotics are working. I'm glad someone is enjoying them because in all honesty this is a horrifying process and if I didn't have a really strong support system I don't know how I would get through it.

I'm back in my angry phase. I'm wondering how 9 doctors could have decided to NOT treat me. Nine doctors-not one or two but nine. I'm wondering how after 28 different medication trials for Fibromyalgia that they didn't stop to think that Lyme could still be the culprit. They made that decision to not treat despite what was in front of them. Does anyone else find that shameful? What ever happened to "first do no harm". Their medical training teaches them to worry about the implications of long term antibiotics as harmful and to only rely on medical science for diagnosis I guess.  What ever happened to listening to the patient? And in my case I had 3 positive co-infections documented and the Bartonella is pretty definitive based on symptoms and the classic rash I recently went through. I suppose I'm faking the brain lesions too.

I don't know what kind of function I'll get back after treatment.The NP already told me I was in a for a long haul. It's hard to be positive in the middle of treatment when you see little or no improvement. I know it's only week 2 so all the other lymies out there are telling me to be patient.

Treatment sucks. I'm tied to my house. You either spend your days hooking up your lines, infusing, playing with syringes, IV flushes, alcohol swabs, dragging an IV pole through  your house, figuring out how to shower, managing spells of rage and crying, waiting for medical equipment deliveries, managing the symptoms from the die off, unhooking, more line flushing, waiting for IV nurses and dressing changes, submitting forms to insurance companies, fighting payments (or lack there-of), getting blood drawn, sleeping (or trying to sleep), or just trying to breathe. Put that on top of taking care of kids, home, cooking, everyday life-yeah you get the picture. Treatment is a full time job.

This week I'm dealing with bad headaches and neck pain, and awful chest pain and air hunger. I can't really call it shortness of breath. It's more like when you were a kid and you swam all day and then at the end of the day you tried to take a deep breath but couldn't because your lungs had had enough. It's that feeling that you can't take a deep enough breath. It's Lamaze breathing 24 hours a day. Walking to the end of the hall exhausts me.

My vision is awful with floaters, black veils, photophobia and blurriness. So now I have to see an Ophthalmologist in Boston that specializes in Lyme vision. The NP isn't hopeful that I will get my full vision back considering how long this has been brewing in my central nervous system with no treatment. Thanks so much sucky non-believing doctors. Spend a day in my shoes and see how long you survive or if you think your decision and former beliefs about Lyme were right. Oh and when you change your mind about what Lyme really is, then we'll make you wait 3 years for treatment. How does that sound?

After my initial 30 days of treatment are done, my IV dose of medication will be increased. Double dosing. O' Joy. Yep-herxing through the holidays. The NP let me know that I have to stay on antibiotics until I no longer have active symptoms and then she does pulsed therapy for how ever longer that takes. In the midst of treatment we do some repeat MRI's to see where we are. A very long haul.

I am trying to focus on that fact that I now have a NP that listens to me, that is treating me aggressively with antibiotics and who is hopeful for my future instead of the lyme naysayers. What I say to my former doctors-I'm not really sure and haven't decided. I'm not sure saying anything would help change their mind. Probably not butat the very least-they will have heard me.

One Week Down

I've had my IV antibiotics for a week now. All I can say is wow. My MD warned me it would get worse before it got better. She wasn't kidding. Initially the antibiotics caused awful chest pain (not new to me just worse with the meds) and very bad shortness of breath. I had some weird virbrating muscle thingy going on (think your cell phone on vibrate all the time).

I'm on day 8 of antibiotics and feeling chained to my house for a couple of reasons. The antibiotics take an hour to come to room temperature and then take an hour (or so) to infuse and I get them twice a day. Depending on my symptoms, I may have to slow it down. So if I can't breathe, it takes longer for the meds to infuse. Not to mention the bouts of chest pain that send me into a total panic which makes it hard to breathe...and well you get the picture.  Last night, oh the headache and neck pain! I can't even call it a headache. It knocked me straight into bed at 7:30 pm and left me in tears and the narcotics didn't even help.

Today was lots of fun (not really) with very bad blurred vision. My computer screen is enlarged to 200%. I'm hoping my vision will clear up as time goes on cause if not I'm screwed. I can't drive right now (be thankful America) and the exhaustion is terrible. The profound exhaustion is beyond words. I nap like an old woman.

Along with this comes the immense guilt and feeling of being a burden to my family. My husband is doing everything and he has never once complained. He's carting the kids to soccer and friends houses, grocery shopping, running errands, working full time and he hooks up my IV each morning and night. The kids have learned to disconnect me, yes even the 7 year old. And I'm completely irritable and cranky. Don't I sound like a joy?

 Don't tell me (or any sick person) to not feel guilty or burdensome. It comes with the territory especially from someone like me who's always done a million different things at once. Yes, I know-slow down, take care of yourself. Please don't tell me that either because I really don't have a choice to do anything but that right now. I need to be responsible for my own decision making and will do what I feel I can handle.

I'm also asking that you not send me your alternative therapies, articles, potions, homeopathic remedies, magnetic bracelets, or suggest high doses of Vitamin C, ginger, tumeric or garlic- because it worked for you. I know you all mean well but it's all I can do to hold myself together at this point and processing one more piece of information isn't what I need to be doing.

The last thing a sick person needs to feel is that they are inadequate in their own decision making. I've had enough decision making taken away from me lately and in the past 3 years. Trust me, I've researched Lyme inside, outside and upside down. My Lyme Specialist is on top of it. I'll get through this.

I am drinking gallons of water with lemon every day. It's helping to detox. I'm eating high protein foods and staying away from yeasts and sugars that feed Lyme. I'm resting and doing all the things I'm supposed to.

Thanks for asking.

How Is Your Facade?

It's been a long few months. After a recent visit to my Lyme Specialist, she's pretty sure I'm postive for Bartonella as well. The tell tale rash appeared after two months on 3 different antibiotics.

Last month she switched my medication regimen again. Blech. What a tiring mess. I have become the poster child for Lyme Disease. I'd rather be something else.

Today I went and had my PICC line placed.

The staff at the RI Vascular Institute were great. It took longer to take my history and prep my arm for the procedure. They gave me my first dose of medication today as well. All in all-it was pretty easy. My arm is sore tonight and I'm tired but that's about it.The IV nurse will be out tomorrow to change the dressing.

The medications will be twice a day for a month to start. I have a little PTSD thinking about my last round of IV meds and my 10 day hospital stay. I'm hoping it doesn't turn that way this time.

Last Sunday at church I spoke with a woman who had breast cancer. While I don't compare my illness to hers, we share a lot of the same symptoms and frustrations in just trying to get through our day.

I said to her, "How's your facade doing?" She started to laugh knowing that outwardly we look fine and even manage to do it all some days. Inwardly-we look and feel like hell. "My Facade is holding up quite well thank you."

For now-life continues. The kids are still happily homeschooling (most days), we are preparing costumes for Halloween and I chug along.

The Second Storm

What a week here in Rhode Island. Hurricane Irene hit and knocked power out for a good portion of the State. We had been without power or water since Sunday and had it restored on Wednesday. We were fortunate to be able to shower and do laundry at a friends house. Many others just had power returned today.

Hauling water from the pool to flush toilets, boiling water for washing and cooking on the grill all were difficult for me and I relied on my teenager and husband to help. It's sobering for me to admit that-what I can't physically do anymore.

I noticed my leg muscles wasting away this week-lack of exercise and immobility. My arm muscles don't have any tone either-soft where there used to be definition. I feel like half the person I used to be.

Day 10 of my second month of antibiotics was going fairly well. The small twitches and low grade fevers, shortness of breath and chest pain have become common place. On some rare days it trades places with brain fogginess, deep pain and skin rashes. Somedays they visit all at once. It's amazing to me what you can get used to.

This is me. I'm posting this horrible picture because well-it's where I am. It's not who I am but...that's me. Left eye drooping with a facial rash.

Last night the second storm hit. Not a weather storm or hurricane but the Herx storm. I don't even know what time it was but I got up last night from my bed and had a need to vomit. Thankfully I didn't but I quickly lost my blood pressure yet somehow made it back to my bed. I was disoriented and woke up Larry. I think I scared him from the look on his face. I can only imagine what I looked like.

I was jerking and shaking violently for hours. Welcome to the Herx storm. No introductions needed-I know you well.

Somewhere in the nonstop twitching, I managed to fall asleep I think from pure physical exhaustion. Morning did not treat me well. My muscles are sore and lead like from the constant motion, I have no strength to walk today. My left arm won't stop moving. My right hand can't grasp. Creating this post has taken 5 hours.

After the Herx storm-it's detox day. Tons of water with lemon, ginger tea, Vitamin C doses, rest. It is all I can do today.

That and my 3 times daily cocktail regimen. Life goes on. Storms present themselves and then blow out sea. Some linger and stay a while.

 I will be here a while I think.

Life with a Twist of Lyme

I've been reluctant to share some recent details of my Lyme disease but tonight I'm so pissed off and I need a spot to write.

Three years ago I was diagnosed with Erlichiosis and Babesiosis which are tick borne illnesses. Despite the routine dosing of Doxycyline and a week of IV meds which had to be stopped because of an allergic reaction: I've had virtually no treatment.

I've had chronic joint and muscle pain for 3 years, mental fogginess, skin rashes, unexplained fevers and a host of other weird and fleeting symptoms. I have seen 9 doctors, have tried 29 different medications, have had countless bloodwork, MRI's, Lumbar punctures and neuropsych testing. I've had every diagnosis under the sun. MS, "post lyme syndrome", Chronic fatigue syndrome and fibromyalgia to name a few.

Instead of my doctors believing I knew my body and what doesn't work well, they all insisted it was something else. I was told I was malingering. Who uses that word by the way? I was told I was fixated on Lyme by a Neurologist that I worked with for 20 years in Rhode Island-oh let's call him Dr. G.

  I was told I had anxiety and depression. Bite me doctors. Just just bite me. I'd like to use another 4 letter word but children read this blog. You should all be ashamed of yourselves and have your licenses revoked. First do no harm? I guess that only pertains to the diseases you actually believe in. And even with positive lab results to prove my illness-they didn't believe. Bite me.

Just before our family vacation in June, I could barely walk. I was having trouble breathing, I had chest pain and a rash around my eye. My right knee swelled up like...well... a tick. I saw my Rheumatologist who ran another lyme test. I left my cell phone number with the MD to call with any test results but decide to go on the vacation anyway.

All through vacation I felt horrible and came home to 4 phone calls from my Primary and Rheumatologist (did you forget my cell number?). I was now positive for Lyme disease as well and they were restarting the Doxycycline. I had had enough. 3 tick borne illnesses. 3.

I've missed out on my kids soccer games, family time, and events. I can't do grocery shopping and I walk with a cane because of pain and muscle weakness. My vision is blurred sometimes and my limbs go numb making driving difficult. This past Sunday we went to the county fair. It required a lot of walking and in anticipation of this-I borrowed the wheelchair from church. A wheelchair. I'm 42 years old.

 In the past month, I had a repeat MRI, and all of my lyme testing repeated as well as some immune function studies. This past month I have spent my days checking off symptom lists and 2 pages of medication lists. I've taken 3 different antibiotics to fight off this parasite and a total of 26 pills a day. The antibiotics caused chest pain, palpitations, severe joint and muscle pain, skin rashes, shortness of breath, difficulty swallowing and a host of other things. Rather I should say the lyme and co-infections dying off caused this. Does it matter?

Today I saw my Lyme specialist who gave me my test results. My MRI is now showing lesions on my brain that weren't there a year ago. I have brain lesions. Lyme parasitic things in my brain. It's in my central nervous system.

 My CD57 count is low. This is an indicator that my immune system is shot and willl indicate my chances of relapse. I was told I will relapse and how much of an improvement we'll get on the meds we just don't know. She told me to anticipate years of treatment. She also told me that I have acquired another co-infection that will require an additional anti-viral medication. My B12 level is dangerously low so we doubled the dose and she mentioned that with some of the symptoms I am having that I was more than likely positive for Bartonella (another tick borne illness that the lab forget to check )as well. All from one stinking tick bite.

So where I stand now is this.  The plan is to take another month of oral antibiotics in hopes of killing off more lyme (and the other buggers) to help minimize my herx reaction while on IV antibiotics, begin the antiviral medication and increase my B12. In another month I start my IV antibiotics after I have my PICC line placed. In 6 months we repeat the MRI of my brain to check on the lesions. I'm exhausted. I want my damn life back. The life where I could run with my kids, form a coherent sentence, not be on government disability and oh I don't know-pain free maybe. All because no one believed me.

The lyme specialist I see is a Nurse Practitioner who opened her own lyme practice after going undiagnosed with lyme for years. My insurance doesn't cover her and the expense has been over $1000 just in this month. I don't know how we're going to continue to pay for this.

In Rhode Island there are no Lyme Literate doctors available anywhere. Most have a year waiting list or more. I now have 12 friends diagnosed with Lyme all who have had inadequate treatment because doctors refuse to believe us and refuse to believe the dynamics of this disease. Bite us doctors, just bite us.

I write all of this hoping those affected by lyme or who may think they have lyme, continue to pursue treatment. I haven't lost hope-perhaps a bit discouraged and yes, I'm so angry right now. My advice:

• Listen to your body and your heart.
• If you've had Lyme or any other co-infection, get treated and you still have symptoms-guess what? You need more treatment.
• Don't let a doctor convince you that you have Fibromyalgia, Chronic Fatigue syndrome or a psychiatric disorder after lyme.
• Pursue treatment until someone listens.
• Read everything, gain knowledge on the testing, the results and how they relate to your symptoms.
• Screw the CDC and their atrocious Lyme guideline treatment protocol.
• Keep a symptoms list every single day.
• Get a support system in place. Your gonna need it. Emotionally, physically and psychologically.

None of this is meant as medical advice. I hope it reaches one person, one doctor or health care professional. I hope they soon listen to the many of us affected by this disease. And if not....they can bite me.

Bev

Lots On My Mind

We spent a week in New Hampshire on a lovely family vacation. I knew before I left that something was wrong health wise again. I'd been feeling awful and had increased generalized pain.



My knee swelled up. Sexy isn't it.

I came home to 4 phone calls on my answering machine. Two from my primary MD and two from my Rheumatologist. My Lyme test was positive again. I immediately burst into tears. I knew it was but you get to a point with chronic lyme that you dismiss symptoms and don't believe what your body is telling you. Please God let it be anything but that.

In August of 2008 I was bit by a tick. In knew I was bit but didn't know how sick it would have made me. Within 3 days I was gravely ill and told I had Erlichiosis but that a 21 day course of Doxycycline would have me fixed up in no time. Well I improved some but by December I was deteriorating further. I had trouble walking and concentrating and couldn't type. I had word finding difficulty and a worsening headache that wouldn't go away and if I worked a night shift as an RN in the ICU, it would take me 3 days to recover. But the headache. Dear God the headache. Symptoms still vary day to day. My arms go numb making driving difficult. My muscles twitch and groan at the slighest exertion. My left eye droops. Sometimes it takes what seems forever to get through one paragraph in a book.

More bloodwork revealed that I also had Babesiosis and I would need IV antibiotics. But I had an anaphylactic reaction to the antibiotics after 5 days and then spent 10 days in the hospital being pumped full of steroids, IV fluids, narcotics. I had MRI's, lumbar punctures and had my gallbladder out.

Since that time it's been an ongoing battle. I've educated myself and despite my doctors believing I have Fibromyalgia, insisted on the Lyme test again. I see a Lyme specialist in a few weeks. Not sure if I am happy about that or just terrified. I have had 5 positive Lyme tests and 3 different tick borne illnesses. There is pain every single day and I walk with a cane. I have word finding difficulty. I'm on permanent disability and have a handicap parking permit. When my disability was approved the relief was great financially but I sat there and stared at the approval and thought, "Congratulations, you're disabled."

People look at me and see how much I do accomplish on a daily basis. I volunteer at my church, in my homeschool group and do a ridiculous amount of things for my family. Yet every single day putting my feet on the floor in the morning is an accomplishment. Shaving my legs is an act of God.

I push myself every single day to accomplish the most basic tasks. I have to. I worry how much damage this freaking vector has done to my body. I wonder if my strength will ever come back or if I will have a day without pain or without some weird symptom wreaking havoc with me.

Yet the CDC insists all my symptoms are in my head. They have set medical protocols that are damaging patients. There is an old Audubon saying, "When the bird and the book disagree, believe the bird." Or maybe it's the "if it quacks like a duck" saying that needs to be recognized.

I take care of myself the best I can. I rest, eat right take the homepathic treatments as well as the antibiotics. Yet somedays even this is futile. I move on because I have to. Because if I give in to this disease, it will swallow me whole. Because each time I give in or let others make a decision for me, I lose a little piece of who I am.

Imagine trying to do just your daily chores. Things like showering, washing dishes, reading the paper, folding laundry, stirring a pot of sauce. No big deal, right? Now try it wearing 50 pounds and with your dominant arm tied behind your back. Not so easy. Oh you may get it done but how tired are you? How much pain are you in? Do you feel good about the job you did? Who had to help you? How did you get that pot of sauce off the stove with one arm? How does the laundry look after folding? Oh but wait, you must also care for 3 kids, pets, clean your home, grocery shop, go to the bank, tend the garden, prepare dinner and follow a recipe. See where I'm going with this?

There is a spoon theory that I like to tell people about. While the woman who wrote it has Lupus and not Lyme disease-it's a great analogy.

I am hoping the Lyme specialist can help. I'm desperately out of spoons.

Beach Day

We were supposed to be on vacation this week. I had to come home on Monday from camping. My Lyme test came back positive again. Arrgghhh. I am one week into antibiotics and was feeling really horrible. My husband and I talked about this possibly happening. I woke up Monday morning with such bad pain in my joints and muscles that I was having a hard time even walking. I thought it was best that I come home to rest. My husband, being the amazing Dad that he is, stayed behind with three kids and has brought them to the beach, bike riding, made smores, built campfires and sand castles and made sure they had a great vacation.

But, I like to focus on the days that are good. Like last Friday when we got to visit some friends at their beach house and play on the beach. It was a wonderfully relaxing day and the swimming helped my tired body quite a bit.

Tae enjoying a lollipop at the beach.

A rare shot of me at the beach. I'm usually taking the pictures.

All the kids riding the waves.

Tae watching the ship go by.

Morgan hunting for sand crabs.

Like these. Totally weird. Tae called them cockroaches.

Patrick surfing. He was in the water for about 4 hours.

And riding the waves. I love this shot.

So much fun.

The boogie board got a work out.

My little man played in the sand.

Morgan and Gabriella pretended to be mermaids.

Tae made moats. I can't count how many trips he made down to the water with his bucket.

Sand and Water. Is there anything more fun?

I guess not.

Mermaid Gabriella.

My handsome oldest. Almost a teenager. How did that happen?

Water tickling our toes.

See that black thing in the water behind Patrick? It's a seal....or a sea lion. We can't tell which. It was swimming along the shore when we arrived at the beach. Every so often it would pop it's head up and dive back under the water. Very cool.


I have some posting over the next few days about our Meetinghouse art project, and my trip to the new Teacher's Store that I found.

Happy Summer!

The Hospital Fiasco

I'm in a weird mood today. The past few months have been really difficult yet really good in a lot of ways. My recent hospitalization just about did me in. I'm really quite traumatized by the whole experience. It's different when you are a nurse and suddenly forced to be a patient. You see things so differently and wonder what kind of nursing you take back to your patients. I've discovered one thing. I'm no longer the nurse I used to be. I don't want to be a nurse anymore. There, I said it. So here is the story of what happened with my health. I have fun homeschooling stuff to post later but for now, I need to write.

In August, I was diagnosed with Lyme Disease and Erlichiosis. The Erlichiosis is another lyme type disease all carried by ticks. I was put on a 6 week course of Doxyclycline yet while my symptoms improved initially, by the end of December I could barely walk due to muscle pain and the joint pain was so severe that it would leave me in tears. My brain was foggy-I was making mistakes at work, I was very irritable and would fall asleep at the drop of a hat yet was awake all night.

My primary MD wanted me to be seen at the Lyme clinic. Unfortunately, there was a four month wait to get in and the Doctor who ran the clinic was leaving. Continuity of care was iffy at best. While at work one night I ran into an Infectious Disease Doctor and picked his brain for a few minutes. Basically, he told me that there was no such thing as chronic lyme syndrome and I must have an underlying problem (as he alluded to a psychiatric disorder). I abruptly refused his offer to see me in his office, reamed him out a bit and scared him off.

I ended up calling another ID doc that I worked with at the hospital. She was great and started me on another course of doxycycline until I could get in to see her in her office. I called her New Years Eve and she saw me the day after New years. Once in her office she set me up with home IV therapy. Little did I know that my repeat bloodwork tested positive for Babesiosis also. Three tick borne illnesses. The plan was to do a 2-3 week course of the antibiotics and then reevaluate and repeat my bloodwork. One week into the therapy I had a full blown Herxheimer reaction where the lyme disease is dying off in massive quantities. It was horrible to feel this. My headache was incredible and even vicodin didn't help. My body was constantly twitching and spasming. I looked like I had Parkinson's disease. One contant tremor. The joint pain worsened, I never slept and could never ever get warm enough. One week into the meds I had a full blown allergic reaction to the Ceftriaxone that landed me in the Trauma room with a closing airway and being pumped full of steriods, epinephrine, Morphine and medicine for the sudden vomitting.

The ER wanted to send me home. I refused. The allergic reaction on top of the herxheimer reaction made all of my symptoms 10 times worse than they were. I had photophobia and double vision from the headache. Morphine, dilauded and vicodin didn't help the headache and I could barely move from the joint pain and my airway was still swollen. I was really scared.

Once in my room (it was supposed to be just overnight) I again asked for pain medicine. The team I was admitted to only wrote for Tylenol. I was in tears from pain and when the nurse came back in she said the doctor only said I could have 1 vicodin every six hours. I started yelling at this poor nurse to get a doctor in my room. No one came. My ID doc showed up a few minutes later and reordered all of my pain meds. By this time I was so upset I needed an icepack for my head and neck.

The next day the vomitting worsened and the plan was to start desensitizing me to the antibiotic so we could retry it for the lymes. But my headache was relentless and the doc decided to wait.

One of the medical Doctors came in to examine me the next day and asked when I was in CT. What? "You have Lyme disease-when were you in CT?" Yeah-cause RI is so far from CT and we don't have ticks here right? Good God. She didn't say much else to me except told me to eat (even though I was vomitting everything up) and left the room.

I called for more pain meds and guess what? Yup-she discontinued everything again. I was a screaming banchee, I called in the Clinical Manager, I called my husband and then paged my ID doc to my cell phone. Meds were reordered again.

Five days had gone by and Neurology finally came in to evalutate me. They recommended a lumbar puncture to check my Spinal fluid. But I would have to wait until the following week because they don't do Lp's and it would need to be done under flouroscopy. No such thing. I called the docs I work with and got it done that afternoon. Although the pain was excruciating and it took them 4 sticks to succeed. Two days later-the spinal headache hit.

Friday afternoon I went down for an ultrasound and found to have gallstones (from the antibiotics). When I got back to my room they restarted the antibiotics at a baby dose after loading me with steroids and benedryl. Within minutes I started to itch-I mean itch like fire ants were on me. I was bright red, my bloodpressure was thru the roof, I couldn't see straight and then my airway started to close again. The code cart was parked outside my room. I've never been on this end before. Epinephrine, massive doses of steroids for 3 days, benedryl around the clock, heart monitor, chest xray, cardiac enzymes. Medication for the vomitting and pain. I was so stoned and had no idea about time. My IV fluids were cranked up to 150 cc for 3 days. I was bloated with fluids.

The nurses were skeptical about my pain. They kept offering fioricet for pain and would lengthen out the time in responding to my call light. I waited 2 hours one time. A few were excellent and would alternate the vicodin with morphine with benedryl. I don't think I was a difficult patient. I asked for pain meds, linens so I could shower. I even disconnected my own IV to shower. I asked for an occasional ice bag and fresh water. Otherwise, they didn't need to do anything for me.

The next morning (my head ache was so severe that I slept out a response to being in such pain) I woke up to the right side of my face drooping, slurred speech and the entire right side of my body not having any feeling. I was vomitting the entire time and couldn't hold down anything. I called for the nurse who promptly told me that there was no morphine and I'd have to take the vicodin by mouth. They also told me that my face was not drooping. They paged the doc who did not return phone calls. I spent 4 hours laying in bed with no pain meds and no doctor even looking at me. I was crying the whole time. Truly, I think I passed out from pain.

When the medicine docs came in later, I was screaming at them. They were all very quiet, didn't say much and left the room. At least the morphine and vicodin were now ordered. I threw them all out of my room and told them when they could provide adequate care to come back.

In the meantime, my surgery was on hold because of the allergic reaction. I was finally scheduled for Tuesday to have my gallbladder out. But the surgeons never failed to remind me that I shouldn't be having this much abdominal pain because my gallbladder looked ok -it was just stones. Mind you I was vomitting around the clock.

Surgery didn't happen on Tuesday-I got bumped and had to wait until Wednesday. Thankfully, the vomitting stopped immediately and the general anesthesia took away my headache. Having my gallbladder out was the easiest part of my hospital stay.

It's taking me a long time to get my strength back. I had a lot of muscle wasting and my mind is still foggy but thankfully I have no more lyme symptoms. The exhaustion is still very profound at night but I am sleeping for the first time in over 6 months.

Being a patient taught me a lot. It taught me how we now do things to patients instead of for them. We don't listen to our patients. We don't listen to their pain and we assume as nurses that we have the answers. Many of the nurses and doctors who cared for me had no knowledge of Lyme disease, the headaches and pains, the Herxheimer reaction or how frustrating it was for me to find someone to treat me. Consequently, I'm still waiting to be seen at the Lyme clinic. Most of those who cared for me didn't bother to educate themselves on the disorder. One nurse did and asked a lot questions and printed out information for the other nurses. Just one.

One of my nurses said to me, "I have no idea what your diagnosis is-I can't even pronounce it." That makes me feel very safe. I'm home now and have to have weekly bloodwork done. I also aquired a c-diff infection that needed yet another antibiotic. My liver function tests and platelet count are still off the charts and they have no idea why. It is quite possible that I have suffered some permanent liver damage and need to follow up with a GI doctor.

I have a lot of thinking to do. What do you do with your life when you''ve been at something for 15 years and now can't bear to face it? How do you find that something that is calling you. There is a message and a lesson in all of this somewhere. I'll find it.

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Lyme Land, Henna Art and Fresh Eggs

So do you all like the look of the new Blog? Cute isn't it. I'm getting good at this.

Let's start with the not so pleasant stuff. This picture below is my daily regimen of medication. Every morning and every night. Welcome to Lyme Land.

But enough of the unpleasantness.
Morgan worked on Math today doing angles, parallel lines, radius and circumferences. She did great. We use the Harcourt Brace book called Math Advantage. It works well for us. Patrick worked on some Math and Biology today. It takes him a while to finish Biology as it is a ninth grade book by Holt publishers. He loves Biology as always does well with it. His Math is coming along nicely and he's finally at grade level also using the Math Advantage program.
After lunch today, Morgan pulled out one of her Christmas presents. It was this really cool Henna Art kit that I got at Barnes and Noble. She's been bugging me for days to try it. This is what came in the box. The patterns, henna mix, instruction booklet and applicator tube. This is the pattern she picked. One of the most complicated ones there were. This is the mixture with the instruction booklet. It looked like stuff I scraped off my boot from the chicken coop. So the pattern Morgan chose didn't go well. The paste was too thick, and my hands were shaking from the Lyme disease. She washed off what I did and made her own but decided it was too gloppy and washed that off too. I guess it takes lots of practice to get it just right. We'll try another day.

My chickens are finally laying eggs and we are getting 2-3 eggs a day so far. I made myself some eggs for breakfast this morning...sunny side up. Isn't the pink egg in the center pretty? The rest are brown egg layers. I don't much care about color...they all taste good.

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New Years Coming and Going

Happy 2009! I hope you all had a terrific and safe New Year. I spent the night celebrating with my patients at the hospital...most of whom had no idea that the New Year had even come upon them. Instead of the usual homeschool/life snippet today, I thought I would recap the year at our lovely home.

Last January, we hired a dog trainer for our new dog named Pete. Pete was a rescue from Boxer Angel Rescue and came to us with some issues. Jeff from Solid K9 training (http://www.solidk9training.com/) continues to work with us and helped us understand

Pete's behavior.

I was busy with the church visioning weekend where we determined our vision and mission statements for our church (http://www.westminsteruu.org/). It was a great experience in planning and the event took the whole weekend. Thankfully, I had my fellow church member and friend Maureen to help. Our Small Group Ministry program was in full swing and going well and my group of six women continued to support and uplift me.

Larry continued to act as treasurer for the RI Chapter of the Tourette Syndrome Association and Patrick attended many meetings with other kids who had Tourette's.

The kids all continued with their Sign Language classes at Exeter Library on Thursdays.

March brought more changes for us. Our dog Pete went to spend 3 weeks with the trainer, Larry decided that he needed a new hearing dog after all of these years without one and we traveled to Princeton, Mass to NEADS (http://www.neads.org/) to have his initial interview. Larry was also evaluated by Dr. Duff to see if he would qualify for a Cochlear Implant. Many hearing tests and physical exams followed this appointment before they would schedule the surgery. It had been difficult for Larry as his hearing continued to deteriorate at a rapid rate.

March is the time when Larry's bonus comes in and I ordered all of the kids curriculum for homeschool for the coming year. Whew-that was cumbersome. And for the first time, I involved the kids in what they wanted to study besides the normal subjects. It has been a huge turning point for me to let the kids take charge of their own learning.

May brought the return of our DRE Renee at church, she has been traveling and homeschooling for the year with her two girls. They shared their video slides with us from across the country and we marveled at the hospitality that other UU churches showed them.

Our new above ground pool was installed and it wasn't long before the kids were swimming in the chilly 58 degree water.

I also started my own homeschool group called The Meetinghouse. We started meeting once a week in our empty in law apartment. The group has now grown to over 30 and we've made some remarkable friends. I also ordered some baby chicks in our efforts to become more self sustaining. It would be several weeks before they arrived but in the meantime, Larry tilled me a new huge garden and put up a fence to protect it from the deer. We also purchased two rainbarrels to help water the garden and Larry was busy working with the kids on the chicken coop that was converted from part of our existing barn.

The kids finished up the school year at the end of May and I submitted report cards to the school and filed our letter of intent to homeschool next year. The new superintendent was apparently not aware of homeschooling laws and denied almost every homeschooler their "permission" to homeschool. Many months of negotiations took place until an understanding (in the homeschoolers favor) was reached. All of us were eventually approved.

June found us planting our garden and spending many hours out there with the kids. We planted bottle neck gourds, pumpkins, beefsteak tomatoes, cherry tomatoes, lemon cucumbers, eggplant, broccoli, and tons of sunflowers.

Roger Williams Zoo also opened their Flutterby exhibit and the kids and I made several trips there. It was a calming, relaxing place with the most beautiful butterflys.

In July, our eight baby chicks arrived by mail. The kids were so excited and spent the next few weeks taking care of chicks.

Morgan also got two Guinea Pigs for her ninth birthday. It was a momma and a baby named Hazelnut and Oreo.

Larry went in for his Cochlear Implant surgery. He did well but it was a nerve wracking time for me. It would be six long weeks before the implant was activated and whether we would know if the surgery was a success. He was plagued by tinnitus for the entire six weeks while he waited.

The kids had a great time yucking it up with Larry and the phrase, "Can You Hear Me Now" was heard often.

The kids swim lessons continued in August and we made full use of our pool. I celebrated my 40th birthday by getting Lyme disease. The tick that bit me also gave me Erlichiosis and Babesiosis. It was a difficult summer but my church helped us out tremendously by supplying meals when I was unable to cook and visiting when I was feeling down. Larry took much time off from work to help care for the kids and for me.

Morgan started Soccer in September and had games every Saturday. The kids started back to their schoolwork around the second week of September but since the weather was still so warm we spent a few last dips in the pool.

Larry and I were busy finalizing fundraising efforts for his hearing dog named Stewie. We managed to raise the full amount needed for his hearing dog and decided to go ahead with the planned fundraiser and donate the money raised to the Canines For Combat Vets program thru NEADS. There was much to be done for the fundraiser and my long time friend and fellow adoptive mother Lori B., helped tremendously with planning.

Larry also had his Cochlear Implant activated and it was a huge success in bringing new sounds to him that he never experienced before. Things like dripping water faucets and squeaking sneakers on wet floors were all new to him.

Larry's mom also went in for knee replacement surgery and stayed at a rehab facility for a few weeks getting her strength back.

October was very busy. Our fundraiser went well and we raised several thousand dollars toward the Combat Vets program.

Larry's brother Kevin and his Jazz band provided the entertainment for the fundraiser. Larry's niece Sofia sang and Gabriella played the drums.

Kevin plays an awesome sax.

Lori helped me with the auction table and did an outstanding job of promoting the items.
I was also able to attend the UUA conference in Worcester, Mass with several other church members. It was a wonderful day of faith and fellowship.

Our chickens finally started laying some eggs. They were delicious. The eggs-not the chickens.

Sadly, on October 12th, Larry's mom passed away. It was a difficult time but the family, as always, pulled together.

The last week of October Larry traveled to Princeton, Mass for a weeks training with his new Hearing dog named Stewie. He was gone for the whole week which was really difficult but came home on Halloween in enough time to see the kids in their costumes.

November brought with it some colder weather. I harvested the last of my gourds for drying over the winter. Morgan finished outdoor soccer and started competitive indoor soccer after making it through tryouts.

I gave my first sermon on Organ Donation at our church and did an info table after the service.

I completed my RN credentialing and CPR renewal for work and the kids took some time off from school for Thanksgiving.

I returned to my doctors office as my Lyme disease entered the chronic phase and I was plagued with new and also returning symptoms. Lots of repeat bloodwork didn't show much but my body was not happy.

December brought the joy of the season as I spent lots of time with the kids. Our homeschool group made lots of Christmas ornaments, had a great cookie swap and the mom's got a nice night out at Clayground where we painted ceramics and we celebrated a wonderful Christmas pageant and Christmas Eve Candlelight service with the kids at church.

Larry's Dad came to spend some time with us and we so enjoyed having him here.

I was finally able to see an Infectious Disease Doctor and restarted another course of antibiotics for the Lyme disease. We are contemplating IV therapy to hopefully eradicate this nastiness and get me healthy again.

Larry took some much needed vacation time away from work but managed to get a lot of house repairs done. Our bedroom is now painted (we only stripped the wallpaper off last February so completing this within a year-well not so bad for us).

New Year's Eve we were hit with another snow storm and the kids are happily playing outside in 12 degree weather.

Overall, it was a difficult year but also one that brought many blessings of family, friends, fresh chicken eggs and an abundant garden, healthy, happy, thriving kids, friends, hearing dogs and new hearing, outpouring of support for our fundraiser and a renewed hope with the election of President Obama. We are focusing on the positive aspects of our lives as much as possible and this year for us was all about developing the community of love and sustenance around us. It has all happened, perhaps not in the way we envisioned, but it did happen.

Financially, we continue to struggle as do many others in these hard times. But our home and family provide the haven and respite that is so needed in times of struggle. We continue to provide the best example we can for our children and for ourselves because ultimately, the rest will work itself out. We hope that all of you continue to look for the everyday gifts that are present in your lives despite the trials and turmoils that may come.

Blessings to all for a prosperous, healthy and happy New Year.

Bev

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Bleeping Lyme Disease Part 2

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I finally went in to see my doctor yesterday. As expected she repeated all my lab work, lyme testing, erlichiosis, western blot and elisa testing. I had a low grade temp yesterday that I was not aware of and have it again today.She gave me something for the muscle spasms that really doesn't help but did give me about 4 hours sleep. I also have to be seen at the Lyme clinic for further evaluation. I just put a call into her office to get the lab results which probably won't be in today but I want to restart the doxycycline since this is how it started last time. Low grade temp, aches and pains, difficulty concentrating, mental fogginess, irritable, headaches etc.
I've been doing a lot of research on Lymes lately. Please remember that the following is not medical advice but after reading countless medical studies I am convinced of a few things. These are the things that made sense to me...it may or may not be true depending on your current thinking.
The last update I see on Lyme Disease treatment from the CDC (center for disease control) is in 1994. They recommend that a Western Blot test/Elisa test only be done after a positive lyme serology should symptoms reoccur. Sadly, patients can still be lyme positive and have a negative serology test. And the western blot also misses more that 50% of positive cases. Since serology only measures the antibody response, not the antibody itself many patients with late stage seronegative lyme may still have the disease and go undetected for years.
It was also found that the Borelliosis bug that causes lyme can lodge intracellulary, morph and change and alter a persons own DNA. Kind of like a cloaking device on a submarine. Borelliosis, as it enters and exits the B lymphocytes, it draws the outer surface membrane of the lymphocyte with it. Bb can then modify its shape and forms an antibiotically protected cyst. These cysts can lay dormant for many months or years until activated by a virus or illness or whatever.
Late stage seronegative Lymes has been implicated in many autoimmune disorders such as ALS, MS, Fibromylagia, Chronic Fatigue syndrome, Alzheimers as well as heart and psychiatric disorders.
A recent Canadian Lyme Disease conference presented the case studies of CSF(cerebral spinal fluid) confirmed LD patients with CNS(central nervous system) symptoms and found that 50% had abnormal CT scans of their brains, most commonly seen were ischemic lesions caused by vasculitis.
Also of significant findings was that the recommended dosing of a three week course of antibiotics is not long enough to eradicate the borelliosis spirochete. Many patients are ending up on months of antibiotic therapy. Again, clinical studies vary in this area and there is no hard core evidence to support this theory.
Doctors need to treat their patients based on symptoms and not rely soley on serology findings.
Then the questions becomes, Is there a post lyme phase or is it all active lyme disease that needs to be treated? Based on symptoms, patients should be treated aggressively at the first sign of infection. That's the science lesson for today.