Day 26- I failed my first exam.

I'm struggling in school more than I thought I would. I studied for hours and I got a 42%. I'm devastated, and I don't know what to do. I contacted the Disability Services office at UI, but I haven't heard back from them yet. 

If anyone has any suggestions on how to (can't find the word... accommodate? no...) deal with it, please help! 

Nothing has changed the past week or so, except that when I spent the weekend with my parents this last weekend, it wiped me out! I slept all day yesterday, and was in quite a bit of pain. Today I'm exhausted and in a lot of pain. 

Still having gastrointestinal issues... :( 

Day 15

It's been a busy couple of days, so I many not remember exactly the symptoms... But--


I've had some neck pain, lower body aches, achey hips, and gastrointestinal issues.


Today I'm really excited to go to a yoga class today-- but I am worried about my energy level.

Day 12

I wore myself out yesterday and am really paying for it today. My eyelids feel like there are paper weights on them, and I've got a killer headache. My temper is short, and my patience running thin. I apologize to anyone who encounters me today...

Hoping my completely lazy day makes for a good day tomorrow.

It took me 9 hours to convince myself to inject the B-12. Its not getting easier people. I hate it. I can't seem to make my hand push it in, or let anyone else do it since I know what it will feel like. And the pain isn't even that bad-- I'm just a woos, I guess.

I'm bored out of my mind being stuck in the house all day, but I can't seem to focus on all the schoolwork I have to do. 

Day 11

Yesterday I was in quite a lot of pain, but the burning subsided, THANK GOD! 


Today is a new day, and I feel that I have some energy to get some stuff done!! YAY!!

NEW SYMPTOM!!!

Today I experienced a new symptom. When we were out in the sun boating, the sun felt extremely hot on me. I haven't been in the sun directly for long periods of time in over a week, so I attributed it to me being a woos. After a while, it began to feel like I had a really bad sunburn and was in the sun. I then went swimming and my face started feeling like I was standing in front of a fire! Even when I put my face in the cold water. When I got back in the boat, it got even worse, and all over my body. I told Eric that it felt like a blow-torch was burning my skin. When we got home, I had Eric look up to see if it was a side effect of any of my medications, but we found that it is a symptom of Lyme. Of course it is... 

Right now its a lot better than it was, but it is still present on my face and the heat makes it a LOT worse!! I couldn't even take dinner out of the oven. :/

Day 9 AND ---> Why I'm not working

So first I need to address something that's really been bothering me. The judgement of not working right now. So let me break it down for you:

In the past 8 years, I have missed way too much work due to being ill. I never knew why I was sick so often but Lyme is hard on your immune system, hence why I got a cold or flu every month or so. I have also had to quit a few jobs because of the symptoms I have experienced such as severe back pain, panic attacks, extreme fatigue, and the list goes on and on. There have been times where I felt I needed to be taken to the emergency room, or just sit in the bathroom for hours because of gastrointestinal issues. 

While I am battling Lyme, I need a lot of sleep. My body is constantly fighting off disease and it needs adequate rest to recoup. I feel embarrassed about this, because it comes of as being lazy, but it just isn't true. A lot of the time I feel like I got run over by a Semi. I know I look fine on the outside... but take a step inside my body and you'll see that it is exhausting being in pain all the time!

Sometimes I am useless, where other times I can actually put makeup on and look nice for my husband :)

Not to mention, I have trouble doing a lot of thinks like cooking, cleaning, talking, walking, shopping, etc. It wears me out!! And sometimes I have what I call a "brain fog". The first time I heard the term brain fog I was in my doctor’s office. The instant I heard that phrase jumped with joy! Because finally, one medical professional, took my symptoms seriously and gave me the words to describe what I was living with day in and day out, a seemingly impenetrable brain fog.  Why was I beginning to stutter?  What was I supposed to do on the days when I could not put two words together? Why did I have to search my mind so hard to find the correct word to use in a sentence? Lyme and Lyme-related co-infections thrive in brain tissue. As they live and multiply, they create infection(s) that in turn cause quite a disturbance in the brain. Infection leads to swelling of tissue. Since the infection begins in the brain, the tissues in the head swell. Swelling in the head causes sinus problems, frightful dreams and painful headaches. (mine include the latter 2). Simply said, the head is supposed to be disease-free and safe-place for the brain. As disease enters the head, the brain can no longer function the way it is designed to function. For example, the brain tries to send signals to cells, however infection makes it impossible for the electric impulse to travel safely to those cells, the cells do not receive the signals they were supposed to receive. A lot of thought is lost in the process.

Anyway-- needless to say, or apparently it is needed-- it is very difficult for me to function in a work setting. I am taking a full load of classes through UI right now, and that seems to be about the most I can do. 

So maybe I look well enough, but I am not exaggerating anything and I know what I need: to stay home and get better.

As for day 9 of treatment... Yesterday I had quite a bit of pain-- sharp pains in my legs that made it difficult to walk. I got another pretty bad headache in the evening which made staying up very exhausting. I'm tired of the shots, and the pills. :( This is all I can muster up for the day... have a good one!

Day 7

So my pharmacy failed to order the Tindimax last week when I requested it, so I just got it yesterday. I started last night. I got a really really bad headache so I went to bed a little early. Other than that, no problems! Yesterday my other symptoms didn't seem to bother me most of the day. Last night and this morning my pain seemed more frequent than it was yesterday. I had a pretty foggy brain yesterday, but thats been normal. Gastrointestinal issues have subsided, yay! No nausea this morning, yay!

I am now on all of my medications for 2 weeks, then I stop Tindimax for 2 weeks. 

If there is anyone out there, I'll keep you updated!

Day 5

Yesterday was a pretty good day as far as pain goes. I had a pretty bad bout of nausea in the morning, but that didn't last too long. I was really tired in the afternoon, but it didn't keep me from living life. There was quite a bit of blood in my urine last night, but it isn't there today. I plan on going in to the doctor's office for a blood test, so I think I will have a urinalysis, too.

This morning I started 2 doxy twice daily. Hopefully it won't affect me too much. I couldn't sleep in the early morning very well, and I'm tired right now. I've had some neck pain, a little bit of joint pain, and a tad nauseous, but nothing too bad.

This evening I will be starting Tindimax. 

Day 3

This is my 3rd day of Doxy, and the other supplements of course. Tuesday I will start on the Tindimax. But right now, I wanted to give an update on how I've reacted to the doxy. 

Yesterday I was extremely tired and pretty much slept all day. I couldn't stay awake for more than an hour at a time. I had shooting pains all over my body, which has been normal, but it was just more frequent than it had been. The sleepiness could be a side effect of the doxy, from what I read, so I'm not sure if it was a die-off or not. After dinner, I had really really bad GERD. My food felt like it was stuck in my throat/chest and I had some reflex. I didn't eat a large amount either. It felt like I ate a huge thanksgiving meal!! It was terrible. I had to sleep with pillows propping me up so that I wouldn't vomit. I also had neck pain for a while as I was falling asleep. So basically yesterday was bad. I missed out on a fun outing with my husband and his family :(. 

Today I was feeling good when I woke up. I felt like my brain was back and I was well-rested. I woke up early, and felt pretty good. By 9am I was feeling pretty nauseous, and I had to wait to take my first dose of doxy. I finally took it around 10am and took the dogs for a short walk. It is 40 min later and I'm starting to get a little tired. My stomach has been bothering me a little today, and my neck is still hurting a little. More just irritating than anything. The shooting pains are a lot better than yesterday!! My right big toe has been bothering me for a few days. Its quite painful. 

I've started treatment.

I was clinically diagnosed with Lyme Disease by an LLMD in Seattle, WA on September 1, 2011. He made this diagnosis based on a few things: my symptom history, my response to a muscle test, and my near positive blood work. He drew blood for another lyme test, and we will test again in a month. 

When you have lyme, and it is not in your blood, your body won't produce antibodies, and therefore the tests will come back negative. Another thing to note is that the lab that tested my blood only tested for 3 of the 7 antibodies, and one came back positive. This gives reason to think that at least one of the other antibodies will come back positive if tested. But because the test is so dang expensive, and insurance won't cover it, we've decided to wait a month. The benefit of waiting is that the lyme is more likely to move out of hiding in my cells and back into my blood. Once its in my blood, my body will produce antibodies to fight it off, and that will show in the blood test. So-- I have lyme, but we are going to try and make a blood test show positive for lyme so that my insurance will pay for my treatment. 

Yesterday I started on Doxycycline. I'm also on Saccharomyces Boulardii to help with my IBS and prevent diarrhea during antibiotics. The probiotic that I am taking is to help protect my gut. I am also on Cyanocobalamin (B-12) injections every other day. On Tuesday, my other prescription for Tindimax will be ready and I will start that, too. Then in 2 weeks, I will start Magnesium Glycinate.

So far, I had some sharp pains in my back/side and in my knees and hands like I had been. I got really nauseous, and had bad GERD last night, so I went to bed at 7pm. Nothing too abnormal though. I've been pretty irritable, too (poor husband of mine!). I've had a "foggy brain". I just can't concentrate!! This morning I've had an upset stomach, stiff joints, neck and back, and some fatigue in my upper back. And the usual sharp pains in random places.

Symptoms

Date	Symptoms	Diagnosis/ Plan
11/04	Dull, achy pain in pelvic pain (left side) 4-6 months, intermittent	Urinalysis, pelvic CT BGH	Pediatric
12/04	CT SCAN- pelvic pain	5.4cm adnexal cyst- possibly ovarian.	Bonner general Hospital
12/04	Pelvic pain, cyst	Ortho Tri-Cyclen Lo 1 month	Sandpoint Women’s Health
5/05	Pelvic Pain	Recommendation to Surgeon, possible hernia	Sandpoint Women’s Health
6/05	Pelvic Pain	No hernia, back to Sandpoint Women’s Health	Selkirk General Surgery
6/05	Pelvic pain, nearly constant	Recommendation to Sandpoint women’s health	Sandpoint Pediatrics
7/05	Pelvic Pain	Recommendation to Physical Therapy	Sandpoint Women’s Health
8/05	Physical Therapy Evaluation- pelvic pain	Ice and stretches	Caribou Physical Therapy
12/07	Pelvic pain, hip pain, abdominal pain, back pain. Some tingling, hip popping out, hurt to walk. Joint Pain	ANA, RA, CRP, Sed rate, CBC, CMP. ANA was elevated and positive, FSBLA positive 3.8 (normal under 1) referred to Dr. Heick, rheumatologist in Spokane. Spoke with Shriners Children’s Hospital, but was too old to get in.	Sandpoint Pediatrics
12/07	Physical Therapy Evaluation- hip/tailbone pain		Caribou Physical Therapy
8/08	Asthma- like symptoms	Albuterol	Moscow Family Medicine
03/09	Delayed menses, weight gain, nausea	HcG negative, blood work normal	Moscow Family Medicine
10/09	Upper Back Pain, joint pain, nausea	Referral, consider rheumatology, Darvocet	Moscow Family Medicine
10/09	Upper Back Pain, joint pain, fatigue	Muscle Spasms, flexeril, Physical Therapy,	Moscow Family Medicine
12/09	Gallbladder Removed	Laparoscopic Cholecystectome. 2x 1.3 mixed-type calculi	Palouse Surgeons
1/10	Rash (elbows, hands, feet, hips), burning and itchy	Hives, antihistamine and Medrol pack	Moscow Family Medicine
2/10	Depression, anger, fatigue	Counseling, recommended Celexa	Moscow Family Medicine
4/10	Vaginal burning/itching	Yeast Infection, Fluconazole	Moscow Family Medicine
6/10	Shaky, lightheadedness, hot flash (no fever)	Rest	Moscow Family Medicine
6/10	Lump on right shoulder	Sebaceous cyst	Moscow Family Medicine
6/10	Fainted, hot flashes,  nausea	Lab draw, change of medication	Moscow Family Medicine
9/10	Ear Pain, headaches, lump on right shoulder	Right ear retracted with clear fluid, no infection. Reassurance, sebaceous cyst 2x1cm	Moscow family Medicine
9/10	Fatigue, tiredness, sleepiness	Hypersomnia, hypnagogic hallucinations, snoring, sleep study	Dr. Grauke, Moscow Medical Center
10/10	Fatigue, tiredness, sleepiness	Change of medication	Moscow Family Medicine
3/11	Rash (pruritic hands, hips, knee, feet)	Medrol	Moscow Family Medicine
4/11	Upper Back Pain, weight gain	Home exercises, ice, stretching, back brace. Referral for weight gain	Moscow Family Medicine
4/11	Weight gain, back pain	Referral to DO, lab draw	Moscow Family Medicine
4/11	Back Pain- DO	Book “Pain Free”, adjustments	Moscow Family Medicine
4/11	F/U weight gain, F/U back pain. Back pain worsened with adjustments	Insulin Resistance, X-Rays Mild dextroscoliosis	Moscow Family Medicine
8/11	Nausea, pain in upper abdomen, feeling faint, diarrhea, constipation, stomach cramping, green stool, feeling “drunk”, not being able to get enough air, vomiting, burping, flatulence, anxiety, irritability	IBS, Blood in urine (UTI), antibiotics, BRAT diet F/U no UTI, 2nd urine sample and lower blood traces	Family Health Services
	Pain in lower right abdomen, feeling disoriented, upper back pain, joint pain, foggy brain, nausea, jaw stiffness, jaw pain, TMJ, hot flashes, skin feels like heater is blowing on it, ear pain in both ears, GERD, chills, shivering/shaking (not cold), irritability, mood swings, losing my mind, too much sleep but always tired, panic attacks and anxiety, difficulty forming thoughts into words, breast tenderness, extreme fatigue, weight gain, hemorrhoids. Symptoms seem to change and come and go.

I'm a Lymie now...

For some reason, when I watched Under Our Skin for the first time, I knew that's what was wrong with me. As I started looking more into it, my findings seemed to confirm my suspicions even more. Everyone thought I was being dramatic, so I dropped it. It's not that I wanted Lyme... I just wanted to fix whatever was wrong with me. Eventually I got new symptoms and went to the doc again. I was diagnosed with something different than before. I looked up Lyme again, and my most recent symptoms were falling in line with a lyme diagnosis. So I pushed it. I forced my MD to give me a blood test for lyme (Western Blot). I saw a LLMD (Lyme-Literate doctor--- a doctor who knows all about Lyme, beyond the myths and common knowledge/assumptions) and was diagnosed with Lyme. I am writing this blog for a couple of reasons. I want others to know what to expect, because I am appreciative of others who have blogs, and also so that I can look back and see the progress I've made. 


So... Now I'm a Lymie... And this is my story.