Taking Control...

In case anyone is lost or curious about what is going on with my Lyme Disease diagnosis and the doctor drama I'm dealing with I wanted to type up something a little more in depth than Facebook statuses provide.

At my first appointment with the Rheumetologist I voiced my concerns of neurological Lyme symptoms.  The rheumetologist did a physical exam checking reflexes and strength.  She felt that even though I had some neuro symptoms (like a chronic (5 month) headache, forgetfulness, trouble concentrating, chronic fatigue (yes that's why I'm always taking naps, really, I'm not lazy), and a depression and anxiety diagnosis) they weren't enough reason to do further neuro testing.  She prescribed the month of Doxycycline and a bunch more pain medicine and sent me on my way.  She scheduled a follow up for 3 weeks later.  The next day I had the flare in symptoms when I stayed with my mom.

Fast forward 3 1/2 weeks.  I went back in.  The inflammation in my knee was down some from when it flared and the pain meds were keeping a good handle on the pain.  However, my knee was still just as full of fluid, and by her own observation was worse than it was at my first appointment.  I reiterated that my headaches/migraines and other neuro symptoms were also not improving and that, in fact, my lips, eye, cheek and ear had started twitching almost constantly.  She felt that the twitching could be from the Prednisone I was on for the knee inflammation and suggested I wean off of it. She did an arthrocentisis (sucking fluid out of the knee with a syringe).  She put the needle in and she had to push hard to get through the lining of the knee joint.  It was extremely painful and I screamed when it popped through.  I felt terrible but I couldn't help it.  I cried the entire procedure.  Every time she pulled back on the syringe I could feel it.  Finally she stopped and unscrewed the syringe and left the needle in my knee.  My knee had so much pressure the fluid flowed out onto the gauze so she let it drain until it stopped. That wasn't nearly as painful. After it stopped draining she injected a Novocaine/Cortisone solution and bandaged me up so it wouldn't drain back out.  She told me if it didn't help by the following week that I should call and they would start IV antibiotics at that point.  She left the room to call a volunteer to wheel me down to my car.  She didn't realize I was still in the room when she came back and went in the dictation room across the hall.  She started talking to another doctor about me. I heard her ask him if he'd heard me scream...at which point she laughed.  I pretty much knew at that point I would probably be looking for a different doctor if I didn't get better.

A week passed and the swelling in my knee had gone down but wasn't significantly better and was still sore.  My headaches had not gotten better at all.  I called and let her know how I was doing and I felt at that point it was probably best to go ahead with the IV antibiotics. 5 hours later I still hadn't heard back so I called to find out what was going on.  Apparently they felt because we hadn't met our $1000 deductible that I should try to stick it out on the Doxycycline for another month and hope it worked.  She said I could chose but they were only going to do the IV antibiotics for 1 week because of the expense and the amount of coordination and work it takes them to set it all up.  By this time it was after clinic hours so I told her I'd need to talk to Ryan about it and get back to her.  She said they were going to be at an outreach clinic the next day and they wouldn't even be able to set anything up until after the weekend.  Which made me feel that they really didn't care that I was still feeling like crap and in pain.  After I got off the phone I called Ryan and let him know how upset and frustrated I was. We decided at that point we weren't going to continue to see that doctor.  The next day I called Aspirus in Wausau and set up an appointment with an Internal Medicine Specialist after getting some advice from a friend that also had Lyme disease.

Today was my appointment at Asprius.  The doctor listened to me. Agreed that I have had Lyme disease since May or June of last year. I probably hadn't noticed the symptoms then because I was dealing with a 4 month old baby as well as standing up in my sisters wedding.  She read through all of my tests and records from Marshfield Clinic for the past year.  She feels my post partum depression and anxiety diagnosis may partially be from the Lyme disease.  The fatigue and general lack of ambition were big symptoms in that diagnosis and those things have still not resolved even though I do feel somewhat better .  She did a physical exam to test for nerve issues.  My reflexes were weak and I was unable to keep my eyelids shut when she pulled them open which concerned her.  She did say the tingling I occasionally get in my right hand in the mornings is not the Lyme disease but carpal tunnel and prescribed me a wrist brace for that. She feels I have enough neuro symptoms to warrant deeper testing.  She ordered another Western Blot to see how my Lyme antibodies are now that I've completed my first cycle of Doxy.  She said the records for Marshfield showed that I still had a significant amount of antibodies at my last check up even after 4 weeks of antibiotic treatment (1 of Amoxicillian and 3 of Doxy).  She prescribed a migraine medication, a B-complex supplement that helps with nerve and headache issues, and a medicine that calms nerve irritation . Hopefully that will get some control over the facial twitching that hasn't gone away despite being off the Prednisone for almost 2 weeks.  If the MRI comes back okay I am to try the medications for a week and see if they help...if they do I'll just continue on with a second month of Doxy and if they don't then she will do a spinal tap to check for the bacteria in my spinal fluid. 

I had the MRI right after my appointment.  I had a headache to begin with but even with ear plugs that machine is SO LOUD.  I thought my head was going to explode right in the little tunnel of the machine.  Afterward the technician told me it would take up to 24-48 hours to get the results to my doctor and then she'd call me.  I left and went to my mom's to pick up the kids.  I had such a headache I took a pain pill and laid on the couch and napped until I could look outside without squinting and then we came home.  By the time I got home there was a message on the machine from the doctor's office asking me to call.  I'm not sure what its about and now I'm nervous since it was already after hours and I couldn't get through to anyone.  I'm hopeful that because they didn't continue trying to get a hold of me that its nothing serious.  Hopefully now I'll start having some improvement or at least know what the heck is going on and why I'm not getting better as quickly as I should be.  Thanks to everyone that has helped or offered to help and for the support and words of encouragement from everyone else.  I will update again in a week or so depending on what the doctor's office says tomorrow.

LYME

is a four letter word

First Steps {finally}...

A Running Start...

This morning Ryan went outside to do chores and get the electric fence around the pig pen patched up and put back together.  A few minutes later he came running in the house.  He opened the door and yelled "Get your boots on!  We have a LAMB!!"  I was so excited I threw my boots on and ran out the door in my pj pants and tank top (it was 35 degrees but I didn't care).

Sure enough laying by the fence was a tiny little black fuzz ball.  She's not much bigger than a cat. She was up and following Peep (our Ewe) around.  She didn't seem to be nursing well and Bo (the ram) was picking on her so we corralled her and her mom in the small shed we have for them.  Ryan held Peep for me and I washed my hands well with hot water and soap to check to make sure she didn't have any more lambs stuck inside of her.  Then I helped the lamb nurse to make sure she was getting the hang of it.  They are both content and bonding in the shed alone together.  Bo however is not impressed and was ramming into the side of the shed so we had to close him off in the back pasture for now.






Now we have to come up with a name for our new addition.  The Ewe and the Ram are Bo and Peep.  I thought of sticking with a nursery rhyme theme but now I think maybe an Easter themed name would be more appropriate since she was born the day before.  Maybe Lily after Easter Lilies.  I'm open to suggestions so please share if you have an idea.

After all that excitement Ryan got the electric fence in the pig pen repaired.  Then he and Sawyer left to get piglets.  We always have such a difficult time finding piglets for some reason.  We thought we had solved that this year when the pig farmer called and said the sow that was expecting our litter ate her babies.  Apparently this happens occasionally and the sow will likely be culled so they don't risk it happening again.

This year we got lucky though and the farmer my mom and stepdad bought their piglets from still had some available.  I will be raising 6 this year.  Our biggest batch ever.  Two years ago we raised 5 and I had all kinds of problems with them getting out.  Hopefully we'll be able to keep the electric fence working all the time this year and I won't have so many issues.





Two weeks ago we added to our baby chick collection.  We have a couple Rhode Island Red chicks and 9 Cornish-X meat bird chicks.  The rest of our order should be here in May.

First Babies of Spring '11!

In all the chaos of my Lyme Disease diagnosis I completely forgot that the eggs I had in the incubator were due to hatch today.  Yesterday Ryan and I were cleaning our bedroom.  I was sitting on the bed sorting through laundry and a untangling some necklaces.  I heard peeping coming from the incubator.  It immediately dawned on me that this was the weekend I had circled on the calendar when I counted out the 21 days from when I put the eggs in the incubator.  Ryan and I quickly took all the eggs out of the automatic turner. (Which was supposed to be done at day 18 so the chicks could orient themselves upright for hatching) and filled the water wells with warm water to bring the humidity up.


When incubating eggs you should set up your incubator a few days in advance to get the temperature regulated.  You want it about 99.5 degrees but definitely no lower than 98 degrees and any higher than 103 degrees for very long will kill the developing chicks.  The humidty is also important.  During incubation it should be about 50%.  I use a digital thermometer/hydrometer that tells me the temp and humidty.  If you don't have an automatic egg turner in your incubator you need to turn your eggs 3 times a day a quarter turn.  If you don't the developing chicks will stick to the shell and won't develop properly and/or won't be able to zip out of their shell.  After day 18 you want the humidity and temperature to stay as consistent as possible so you should not open the incubator during this time unless you absolutely must.  Humidity should be about 75%-80%.  When the chicks start to hatch if the humidity is to low the membrane will dry out before the chick can get out and it can get trapped and die.  If the humidity is too high the air bubble at the end of the egg may not be big enough and the chick will drown in its shell before its able to pip.

During my hatch I'm keeping the humidity at about 85% because my humidity dipped to 20% while I was staying at my mom's and I think the membranes will not be quite wet enough.  This seemed to be the case with my first chick who pipped last night/early this morning but had not many any progress all day on its own.  I decided to flake some of its shell off carefully and let it get itself out of the membrane.  Now that the humidity has been up longer the second chick was able to pip and zip its shell all by itself without help from me.  I hear at least two other eggs chirping but they don't have external pips yet.  I candled all the eggs again today as well  and I have about 10 eggs that I'm pretty confident will hatch.  The rest were either infertile or stopped developing a while ago.  I am planning to put another batch in the 'bator in a week or so.

Chick #1 getting its sea legs



Chick #2 zipping its shell (I don't know why they call it zipping...it should be unzipping in my opinion)



And the exciting part...Hatching!
(Ryan keeps making fun of my excitement that you hear during the video.  I've hatched eggs only one other time and did not have a hydrometer and had to help all of the chicks out of their shells which is not nearly as fun as watching them do it all by themselves.  Ryan can suck an egg (pun intended, lol))

"Speed Bump"

Doesn't it just figure.  Life seems to be going great. You are meeting goals you set for yourself. Everything just seems to be falling into place and WHAM something happens or comes up that throws a wrench into everything.  We seem to be at that point.  I've been dealing with some pain in my knees for about 6 weeks.  I inherited my mother's grace (or rather, lack of).  I assumed I had over-worked them doing chores in the deep snow...or somehow managed to sprain them.  Instead of getting better despite working through the pain or resting them, they continued to get worse.  Climbing the stairs to our bedrooms was excruciating.  I dreaded going to the bathroom because it hurt so bad to get back up.  Finally after a yearly doctor exam two weeks ago, Monday, I made time to go to the urgent care center to have my knees checked.  My left knee was extremely swollen, full of fluid, and warm to the touch.  The doctor asked me a few questions and said he felt it was some sort of infection in my knee rather than an injury.  He ordered a handful of blood labs and referred me to the rheumetologist. After I had 6 tubes of blood drawn I made my appointment for Wednesday afternoon.  Over the next 24 hours my left knee continued to swell. On Tuesday the urgent care doctor called with my lab results.  They indicated I may have Lyme Disease?  I was shocked.  I hadn't had a tick that I remembered being on for any length of time. Living in the country and being outside as much as we are we're very diligent about always checking the kids and ourselves everyday after being outside.  I had also never had the tell-tale bullseye rash that we are told to watch for.  After some research it seems only 50% of Lyme patients get such a rash and because the tick that carries Lyme is so tiny, most people never know they had a tick until they start showing Lyme Disease symptoms.

The first stage of Lyme Disease happens in the first 1 to 4 weeks.  This stage is the early localized reaction.  Symptoms may include: A circular bullseye looking rash that gets larger with time.  Lack of energy, which is the most common symptom. Headache and stiff neck. Fever and chills. Muscle and joint pain. Swollen lymph nodes.  Some people who get Lyme will not notice any of these first symptoms. Not everyone gets the rash and the other symptoms are brushed off as the flu.
After getting the call that Lyme Disease was indicated I started researching to see what other symptoms I had in the past that I missed. Sure enough after reading the first list of symptoms I could recall have joint pain in my hands, wrists, and shoulders during the summer even though at the time I couldn't remember an actual injury. I thought I just slept on them wrong or something to that extent. Eventually they got better and I forgot about them.
I read on to Stage 2.  Stage 2 is called the Early disseminated infection and happens around 1 to 4 months.  Symptoms at this stage may include: Being tired. Additional skin rashes in several places on your body that develop as the infection spreads. Pain, weakness, or numbness in the arms or legs. Inability to control the muscles of the face (paralysis of the facial nerves). Recurring headaches or fainting. Poor memory and reduced ability to concentrate. Conjunctivitis (pinkeye) or sometimes damage to deep tissue in the eyes. Occasional rapid heartbeats (palpitations) or, in rare cases, serious heart problems.
This stage I could recall specifics about.  In August I developed a horrible rash on my feet.  I COULD.NOT.STOP.ITCHING! I thought it was athletes foot and self treated with over the counter medications.  It did not get better and eventually developed into a large splotchy rash up my legs to my thighs.  My family doctor diagnosed me with eczema and prescribed a steroid cream.  It didn't help but the rash eventually got better on its own.  I started getting headaches on an almost daily basis.  I thought it was possibly a hormonal imbalance because I had also been diagnosed with post partum depression and an anxiety disorder.   I was also exhausted all the time but I have a baby who is still up frequently at night due to teething so I thought nothing of it even though it usually didn't matter whether I slept well or not.  I was always tired.
And finally this is where I'm at now.
The 3rd stage called Late Stage Lyme Infection. Symptoms at this stage may include: Swelling and pain (inflammation) in the joints, especially in the knees. Numbness and tingling in the hands, feet, or back. Severe fatigue. Partial facial nerve paralysis, which usually occurs within the first few months after the tick bite. Neurological changes, including problems with memory, mood, or sleep, and sometimes problems speaking. Chronic Lyme arthritis, which causes recurring episodes of swelling, redness, and fluid buildup in one or more joints that last up to 6 months at a time.
The knee pain and swelling being my biggest symptom.  I had also mentioned to Ryan a week or so ago that I felt like I had pregnancy brain again.  I was forgetting little things, misplacing things and just had a general mental fogginess.  I blamed it on my extra tiredness.



The urgent care doctor started me on Amoxicillian 500mg every 6 hours. Doxycycline

Friday morning, while I was getting ready upstairs Sawyer jumped over the gate we use between the living room and kitchen so Danica can't get near the wood stove.  What I didn't hear was the gate actually fell.  Sawyer came up to talk to me and as he turned around to go back down he started talking to Danica who had managed to make it up the stairs.  Before I could get to her I heard her fall.  I picked her up to find blood dripping from her mouth.  She nursed and stopped crying.  She caught the inside of her lip with her teeth and had a fat lip but didn't need stitches thank goodness.  It was a very rough morning.



Shortly after a friend from church picked up me and the kids.  We dropped of Sawyer at "Grandpa" Victor's house.  Then we headed down to Marshfield for my appointment.  She took Danica shopping with her while I was seen by the doctor.  The doctor tried to remove some of the fluid from my knee but because of the inflammation and infection I could feel every time she pulled back on the syringe.  She got enough fluid to send to the lab so they could confirm the Lyme.  She said the antibiotics should start helping soon.  I scheduled a follow up appointment for 3 weeks later.

Friday night during the night I had to get up with Danica only to find I could barely walk.  My other knee was also swollen and painful.  By morning I was in tears.  I called my mom and asked her to come and get me in the kids.  There was no way I could take care of them.

Both the boys were so helpful.  Sawyer got me clothes and diapers for Danica so I could get her changed while I laid on the couch.  They both picked up all their toys.  Landon vacuumed the living room and made him and Sawyer peanut butter sandwiches for lunch.  My mom and step dad got here shortly after.  They did chores for me and helped pack up some clothes and we left for their house.



Of course, not to be outdone by Danica, Sawyer fell outside at Grandma's shortly after we got there. Thankfully, even though there was much blood and tears, no stitches.



By Sunday the pain and swelling was even worse.  I called the on call doctor who prescribed me Prednisone which helps with inflammation and suggested I wean Danica so I could go on the stronger antibiotic I mentioned before, Doxycyclene.  Within 24 hours of starting the Prednisone the knee pain was much better.  I was still sore by the afternoon but not in the excruciating pain I was before.  On Tuesday the swelling and pressure still hadn't gotten better and Danica was down to just one nursing at night occasionally.  ( I had been working on weaning her down with all the pain medications I was on already)  I called my doctor and she called in the prescription for Doxycycline.  She told me she had a lady with Lyme Arthritis as bad as me earlier in the winter.  Once she started the Doxycycline the fluid and pain got better within 3 days.



Wednesday I came home with Sawyer and Danica and was pretty sore, swollen, and stiff.  We went to bed early.  Danica slept in the playpen and Sawyer and I slept on the spare bed in the playroom.  Thursday we had a very lazy day in our jammies.  Someone from church brought over lasagna, homemade spaghetti sauce and noodles, and two loaves of bread and Ryan's mom came over to do chores again.  Friday we had another lazy day.  I was really having terrible headaches on top of my knee problems.  I spoke to my doctor and she prescribed a new pain medicine and mailed it out to me. Ryan got home about supper time and I was able to rest the entire evening on the couch with my knee up.  He made supper and took care of the kids.  Yesterday morning I woke up with much less swelling and fluid which of course I took advantage of.  Today I'm sore and stiff again but not nearly as bad as it has been.  I'm confident I'm on the upswing now.  Ryan will be home for the week to make sure I have help while I keep recuperating.  Hopefully by the time he leaves I will be mostly back to myself. 

My pill regimen...yuck!