It's just a cold.

At least, that's what it would be for anyone else. For me, it feels like my body is rebelling. It started with a fever for a few days last week. I thought it was from the new medication that the Lyme specialist put me on. But then the stuffiness started. Breathe Right strips were not working to help me sleep. When I don't sleep, everything feels awful. I had to resort to Afrin to get some sleep. The stuffiness has not gone away, and now it's mixed with migraines and dizziness. Wonderful.

It's almost 1 AM

I should be sleeping. This is one side effect so to speak that I can't get used to. I don't know what it's a side effect of, but it has only been happening in the last year. As tired as I am, when something wakes me up, I can't fall back to sleep. Sometimes it is hours before I can get back to sleep. So far tonight I've been up since 11:45, after going to sleep at 10:00. I had an exhausting day and fell asleep very quickly. I'm still exhausted so I don't know why I haven't been able to go back to sleep. Sometimes I just need to get out of bed for a little while and then try again. Then I end up falling asleep right before my alarm goes off. And then I'm a wreck at work.

Speaking of being a wreck, this week is going to be rather stressful. After all of the recent rain, we've had a lot of flooding in our basement. And mold. Who knows how long the mold has been there, or if it's been contributing to any of my health problems. So I'm anxious to have the basement fixed and the mold removed. But that comes at a price (my sanity). We have to have everything moved away from 2 whole walls of the basement (that's half of the entire basement). Everything has to be moved 8 feet out from the wall. All furniture, carpets, everything! When your basement is partially used for storage and the other part for living in, it's no easy task to find space to move everything TO. I spent the day today going through toys, trying to get rid of stuff, moving things around, and I feel like I got nowhere. Sure, there are several boxes and bags of stuff in the garage to be donated, and some trash, but there is still so much to do and I'm really stresses about it.

On top of that, Jackson's birthday party is on Saturday. So i have errands to run to prepare for that. Then family will be coming over after the party. Thankfully, I know they understand the situation and will forgive me for not having a spotless house. In fact, a few of them are even staying to help move furniture on Sunday in preparation for the french drain installation on Monday.

And of course, I have a job to go to all week.

Side note, I had no idea how many DVDs we had accumulated throughout the years. I filled 2 boxes while emptying the entertainment center, and that doesn't even include the kids' movies which are stored somewhere else!

Medication side effects

There is never a dull moment for me. Between migraines and fevers and aches and pains, I also have to deal with the side effects of the medication that I take to try to help all of it. I'm now on another antibiotic to treat a Lyme co-infection called mycoplasm pneumoniae. With all of the fevers, the doctor is convinced that there is another infection going on. Since my tests show positive for a past infection, the doctor is treating it. I'm taking an antibiotic called Biaxin. I've never been on this one before. The first thing I noticed was an awful taste in my mouth. And it just won't go away. After a few days on the medicine, I started to have stomach pain. The kind of pain that wakes you up in the middle of the night. Funny that one of the listed side effects is diarrhea, but since I never get the usual stuff, I'm having the opposite problem.

For the adrenal fatigue, my primary doctor has me on pregnenolone. It's not exactly a steroid, but technically it's the precursor to steroids. No surprise that I'm having the typical steroid side effects. If I take it without a full meal, I get really nauseous within a half hour. And I'm starving all the time. So of course I'm gaining weight. And my favorite... I have to pee constantly. I can't stay out of the bathroom.

So today I'm home. I woke up with awful stomach pains and a migraine. Hopefully things will get better soon.

My doctor's advice:

1. You need to quit your job.
2. You need to reduce your stress.
3. You need to get more sleep.

I'm not really sure how any of those things are going to happen. It appears that I am now in stage 4 (of 7) of adrenal fatigue. Basically, my adrenal glands are not producing enough cortisol (and other important hormones) to keep me going. This is one of the reasons I'm always so tired. I don't have enough cortisol in the morning to even get out of bed, and then it keeps going downhill throughout the day. It's also the reason I take much longer to recover from illnesses than most people.

The doctor has suggested a few band-aid approaches, but I am not feeling any difference yet. And the running around of the beginning of the school year is not helping. But this is life and I have to live it.

That didn't take long

My primary doctor thought we'd try one more form of vitamin D. She found a compounding pharmacy not too far away and the pharmacist said he could make a vitamin D cream to apply transdermally. The theory was that if my problem was being caused by the D passing through my digestive system, this would eliminate the issue.

So the nice pharmacist made up a batch of cream for me to try, and even shipped it to me free of charge (the sample was also free!). Based on his instructions, he gave me enough to last for 12 days which is long enough to see if I had a reaction to it. Of course, I only used half of the recommended dose, being afraid of having problems again. I applied it yesterday, and again this morning. On the way home from work tonight I started having the familiar lightheaded feeling. It only happened a few times, but thankfully I recognized it at once and I know it's being caused by the D so I won't continue with the cream.

My last experiment is to try only using it once a week. According to my doctor, if I can tolerate it in tiny doses, it's still better than nothing.

Oil of oregano

I'm all for homeopathic remedies, but oil of oregano has to be the most disgusting thing ever! Yesterday, my ear and throat started hurting really bad. My left tonsil was all red. I've read great things about the healing powers of oil of oregano so I thought I'd try it. Now, I don't mind some oregano on my pizza, or in sauce, but liquid concentrate straight on your tongue is just awful! I drank a ton of water to get the taste out of my mouth but that didn't work. A couple of crackers helped a little but the taste lingered for hours.

The good news is that it did help my throat feel somewhat better. At least it was tolerable for a few hours. It helped enough that I even choked down a second dose later in the evening. Today I switched to Throat Coat tea with honey.

Update 3/25/16:

I've actually been taking oil of oregano on a regular basis lately, and it does have some pretty amazing powers. It helps get rid of colds, sore throats, and numerous other issues. It's also good for candida. Thanks to all the antibiotics I've been on in recent years, I tend to get candida in my throat. Oil of oregano stops the growth and actually keeps it away.

For a while, I was choking down the liquid form, but I recently began taking it in capsules. These capsules work really well, so I'm going to keep taking them twice a day, and more as needed when I start to feel sick. The liquid probably works better for certain things, like throat issues since it goes directly to the source, but the capsules are great for everyday use. Plus, it's easier to convince my kids to take a capsule when they get sick than it is to get them to drink something with the drops in it!

Still more questions than answers

It's been a long, hot summer. I don't handle the heat very well, but it seems that I'm not doing well even when I hide in the air conditioning. Fevers, migraines, aches and pains have kept up at a steady pace. It's been over 3 months since I finished the antibiotic treatment, yet at my 3 month follow up I still had pain and swelling in my ear, swollen glands, and a fever. If that only lasted a few days, I'd say it was a normal virus. But it's a daily occurrence.

So, more testing and waiting for more answers. Today all of my joints hurt. The last few days have been full of migraines and fevers. I can't win. If it was just one issue, I might have a good day every now and then. But every day it's something different. What will tomorrow bring?

Slept late and had a nap

It's been one of those weeks. All of the running around to the doctors, and working, has me completely wiped out. Thankfully, Megan took a good nap this afternoon so I was able to take one, too. She wants to go to the pool later, which will wipe me out even more.

This week I had an uneventful visit with the dermatologist. Then I met with the audiologist. As I already knew, there is no cure for tinnitus. She offered a few suggestions of things that I can do to help, but no matter what, she said it will take time. Even if it is a result of the Lyme, she said it could take up to 18months after treatment to get better. That's not helping.

I'm still on the gluten free diet, which really sucks. I wish all of these trials didn't take so long to get results. It's been a week and a half and I see no difference. Man, I just want a magic pill! I'm eating right, sleeping as much as possible, cutting all of the bad stuff out of my life, and I still feel like crap on a regular basis.

Doctors, doctors, doctors

Last week, I had a follow up with my ENT to go over the results of my CT scan. The short story is that he wants to remove not only the recurrence of the hemangioma in my neck, but also the muscle that it is attached to. He said it's not a rush, but he suggested having the surgery in the next 2 to 3 months.

I had another hearing test while I was there. Good news is that my hearing has not gotten any worse since January. The bad news is that they still can't figure out any reason for the tinnitus and ear pain. So this week, I'll meet with their chief audiologist to see if she has any suggestions.

The next stop was my primary doc. I wanted her opinion on the surgery, and also just to follow up in general. She had no ideas about the hemangioma. Even looked it up on her medical sites and couldn't find any information. She said it won't hurt to get a second opinion. Sure, in my spare time. Other than that, when I told her how bad I was still feeling, she suggested I try an elimination diet to see if there is any food allergy contributing to my issues (migraines, exhaustion, fevers). She's not the first person to tell me that you can be gluten intolerant without a positive celiac panel. I told her I'd give it a try, but I don't think that's the issue. I've been trying the diet for about 5 days, and the biggest problem is that I'm starving!

Today I took a vacation day from work (at least a little extra rest) so I can take Jackson to the Lyme specialist. It's his follow up appointment. My follow up is next week. But first, later this week I have a dermatologist appointment and the appointment with the audiologist. Busy, busy!

Still the same

It's been about 6 weeks since I finished treatment, and I don't feel like much has changed. I'm still running fevers on a regular basis, still have ear pain and tinnitus, and the exhaustion is even worse since starting back to work in the office. Now I have less time to cook healthy food. And more running around to do. I'm not sure how long I can keep up at this pace before I completely burn out.

How do I get so lucky?

It seems like I am the only one with such bad luck. I finished my Lyme meds on a Friday, and thought I'd be feeling better by the end of the weekend. Instead, by Sunday night I had fluid in my ear and an ear infection. I felt awful on Monday. Earned myself another antibiotic and a steroid. It took a good week for my ear to stop hurting. The same ear, of course, that has been giving me trouble for the last few years.

Two weeks later, and I still feel the effects. My one month follow-up with the Lyme specialist is this week. I had really hoped to be feeling somewhat better by now. I'm still exhausted. I took a nap almost every day in the last two weeks. The only bright spot right now is that I've seen additional improvement in my neck. I actually noticed at the end of a rather long and trying day last week that I didn't have my expected neck pain. Not even the rotator cuff pain that was going down my arm - unrelated (so I thought) to the surgery. I'll take it!

Please disembark the ride

I just took my last pill for Lyme treatment.  The last week and a half, since I had the PICC removed, has been quite the rollercoaster ride.  Fevers have been up and down, migraines, exhaustion... all the fun.  You would think that after the IV was done I would start to feel better.  But, the doctor wanted me to take the oral Tindamax for 10 more days.  The Tindamax is a killer.  Now it's over.  The warning label says not to drink alcohol for 3 days after finishing the medication, so I'm hoping that within 3 days this will be out of my system and I'll start to feel human.  Maybe in time for Mother's Day?  That would be nice.

The last few days have been rather surprising though.  People I know who have had Lyme have started coming out of the woodwork.  It's amazing that so many people have had it yet there is so little known about it in the medical community.  Just today I was at my dentist and found out that one of the assistants "had" Lyme.  She's been treated and told that she was cured, but she said she still feels like she's having relapses.  She asked for the name of my specialist, because she said she now needs a doctor who really understands the disease.

On a related note, I got my own copy of the documentary Under Our Skin.  It's a fantastic movie about how our healthcare system is failing Lyme patients.

Anyway, a little bit of energy would be nice.  Maybe a day where I don't hit a wall at noon and need a nap before I fall over.  Or a day without a migraine.  A girl can dream.

So sad

I read an article in Vogue magazine today about Lyme disease.  You would think that any news is good press for such a misunderstood illness.  But this article just contributed to the confusion.  It was basically an article about a woman with chronic Lyme.  Then the article denied that there is any such thing as chronic Lyme.  I hate to read things like this.  For the last 2+ months, I sit in a room for over an hour every day with LIVING PROOF of chronic Lyme disease.  Not just me, but 20 other patients.

On the other hand, the doctor's office loaned me a copy of the documentary "Under Our Skin" which follows several Lyme patients as well as several doctors' struggles with treating Lyme and maintaining their medical licenses.  Another sad state of affairs.  However, if you ever wanted to know some of what I've been going through, this documentary is not to be missed.  I'll be buying a copy and will be happy to loan it out to anyone who wants to understand.

Update: There is now a 2nd movie, Under Our Skin 2: Emergence.

Good and bad

It's been a while since I've had time to write.  Bad news first...

I had the surgery on my neck and had a 1 in 100 complication.  At the end of the surgery, I had a dural leak - a leak of spinal fluid.  Instead of being up and about the same day, I had to be flat on my back for 24 hours to allow the leak to heal.  I spent the time in the hospital, only being allowed to raise the bed 30 degrees to eat.  Thankfully, by 3 days after the surgery I was feeling fine.  No positional headaches, which is the sign of the leak.

For the good news, the surgery was successful.  I noticed an immediate difference, and could even separate out the pain from the surgery from my usual neck pain.  The surgeon said that my nerves at C5/6 were extremely compressed so he expected me to feel worse before feeling better since he was messing around with everything in the area.  The right side of my neck felt like I was beaten up after surgery, which was the inflammation from the surgery.  My usual pain is more of a pinching feeling.  Now, over a week later, I still need to rest my neck by the end of the day but it is so much better.

In other news, I only have 2 more IV treatments.  I am really looking forward to having the PICC taken out.  I will still have about 10 more days on the last oral antibiotic, but hopefully I will start to see more improvement once the main treatment is done.  Time will tell!

48 hours...

Not that I'm counting... but surgery for my neck is Tuesday morning.  I know there are risks, but the pain can't get much worse than it has been lately.  Tomorrow I meet with the surgeon to go over my MRI and discuss the surgery.  I'll get my arrival time some time on Monday night.  Tuesday morning, I arrive whenever they tell me to.  It will be about 1.5 hours pre-op, 1 to 1.5 hours surgery, then 1 to 1.5 hours recovery.  The anesthesiologist promised to give me the "good stuff" for nausea since I always get nauseous.  Assuming all goes as planned, I'll be home in the afternoon and encouraged to take 2, 10 minute walks in the evening.  Although I'm nervous, I'm also excited.

As for everything else, I am thankful to have taken my last Tindamax pill (for now) this morning.  It seems that Tindamax is very effective.  It supposedly attacks the cyst form of the bacteria.  When attacked by the other antibiotics, some of the bacteria react by forming cysts around themselves for protection.  These cysts don't get killed off because they are essentially hidden.  The Tindamax is able to attack them though.  10 days of this medication has produced migraines, higher fevers and lots of general pain.  Hopefully, I'll stop feeling so crappy soon.

But I still have another 20 days to look forward to at the end of treatment.  Whatever it takes.  At least I have a break for now.

Guess I'll skip the wine

It's not like I'm a heavy drinker, but I do enjoy an occasional glass of wine, or certain kinds of beer.  For the past year I've been getting raging migraines any time I've had any kind of alcohol.  It seems that was my body's way of telling me there was something more going on.  I couldn't process the alcohol correctly, most likely because my body was busy fighting everything else.  Alcohol was just one more poison thrown into the mix.

On Thursday, Dr. Braccia started me on a new medication that is supposed to attack the Lyme spirochetes that the other antibiotics can't get to.  The PA, Heidi, warned me not to touch "even a drop" of alcohol while on this medication.  The reason, she explained, is that this medication (Tindamax) will make you violently sick to your stomach when mixed with alcohol.  Apparently this is the medication that is given to alcoholics to completely turn them off from alcohol!

Clearly, it's not like I will be missing much.  I think it's the thought of not being able to even try it that pretty much sucks.  I know I'll survive, and I have much bigger issues to deal with.  I'm counting down to the neck surgery in just over a week.

So much going on

The last week or so has been crazy.  The ringing in my ears has hit an all-time extreme.  I can be driving on the highway with the music blasting, and I still hear it.  The fever continues, as does pain in my neck and exhaustion.  I had an appointment with the Lyme specialist last week, and he assured me (again) that this is all good signs.  The medication is working, and it's very common to get worse before you get better.  Right now, my left ear actually hurts.

Through all of this, I actually find it refreshing to go to treatment every day.  There is something to be said for the "support group" of other patients who have similar stories, similar symptoms, and who totally "get it."  We share food tips and information on the best supplements to take.  We commiserate about how little sleep we've gotten or how much sleep we need.  Today, as I was grabbing the right side of my neck in pain, another patient noticed and loaned me her "deep relief essential oil" for pain relief.  I was kind of amazed that within 10 minutes the pain on the right side had subsided.  Needless to say, I stopped at the store on my way home and picked up a few essential oils to use on the left side of my neck.  (Clove and peppermint, in case anyone wanted to know.)

The one thing that Lyme treatment isn't going to fix is the problem in my neck.  3 bulging disks and 2 fractured vertebrae are going to cause pain no matter what.  The good news is that I've been cleared by all of my doctors to have the neck surgery at the Laser Spine Institute.  It's my understanding that the reason LSI has such a good track record is because they are selective about their patients.  They only accept people who they know they can help.  So I'm actually happy that they've determined I'm a candidate for a procedure.  In less than 2 weeks I'll be having the procedure.  The bad news is that in preparation for surgery, I can't take any pain medication.  Hopefully, in 2 weeks that will be an issue of the past.

For now, I'll keep chugging along.

Favorite new "product"

I was reading up on some natural remedies on the internet recently and came across tea tree oil and its many uses.  One remedy that I read was to mix it with rubbing alcohol and water, and use the solution to cure athlete's foot.  Although I didn't have athlete's foot, I thought I'd give it a try since my feet were very dried out.  I've tried all kinds of products, pumice stones, etc and they are always dried out.

After I showered tonight I realized it had been a while since I've used the pumice stone.  When I looked at my feet I was amazed.  They have never been so soft!  EVER!  No dry skin, no hard spots, no cracking, peeling, NOTHING.

I wonder what other miracles tea tree oil can perform!

Sweet potato fries

Back to the food follies... I was attempting to make sweet potato fries to go with dinner tonight.  I cut the palm of my hand on the first slice with the knife.  My hand slipped while trying to push down on the tip of the knife and the tip went into my palm.  Not the end of the world.  Sean said he thought I would have used the mandolin, and I reminded him that I cut myself on that last time, too!  I don't think I'm cut out for cooking.

Overall, this has not been a great week.  In addition to the fevers which seem to now be a constant, this week has been full of migraines.  The tinnitus has also gotten worse not just in the left ear, but now also in the right.  Although it's really annoying and sometimes painful, I still think this is all good.  You're supposed to expect ups and downs with the treatment.  Sometimes the worsening of symptoms means that the medication is flushing the spirochetes out of their hiding places.

I have a new issue, too.  For the last 2 weeks, I've noticed that my hands itch on occasion.  It's not normal itching.  It's intense itching.  It might be on a finger, on my palm, front or back of my hand, pretty much anywhere.  There's no rash, and my hands aren't dry.  At first I thought it was because they were dry, but I was putting hand lotion on constantly and they really aren't dry.  I mentioned it to the PA at my appointment this week, and she confirmed that it could be a reaction to the antibiotics.  (She actually told me that when she takes antibiotics, her back itches!)  Her suggestion was either Benadryl or Benadryl cream.  This morning I loaded up on cortisone cream when the itching started.  It seems to have helped, so I'll keep trying that before hitting the Benadryl, which makes me sleepy.

Off to check on the sweet potato fries in the oven!  I hope that they turn out ok.

More pain... more answers?

My twice weekly visits to PT have been helping to reduce my neck pain, briefly.  By a day or two later I'm always right back to where I started.  I have a cervical traction unit that I use every day or two, a stim machine to help relax the muscles, lots of stretches and exercises that I do at home, and still I have pain.  In August I had an MRI which showed 3 bulging disks.  Clearly, with the pain that sometimes shoots down my arms, the disks are pinching some nerves.  I also have arm weakness when I lift anything overhead (think: hairdryer).

After 3 facet injections, the orthopedist suggested something called radiofrequency ablation.  Essentially, he'd be going in to the same area as the facet injections and heating the pinched nerves to deaden them.  Obviously, the pain will lessen if the nerves don't feel anything.  He said to think about it and get back to him.  After mentioning it to my PT, she suggested that I call a place called the Laser Spine Institute.  Supposedly they are the best in the nation at minimally invasive spine surgery.  She said that it might be a good idea to have a consultation with them just to see what they say about my condition.

I finally got around to calling them and sent my MRI in for review.  Then I had a consultation.  I don't know why, but all of my medical issues (why do I have so many?) end up being a challenge for my medical providers.  There was a tech and a physician's assistant reviewing my MRI with me.  The images were up on a large computer screen.  Even I could clearly see the 3 bulges.  But then the PA pointed out a shadowy line across the C-7.  Looking at another view of the same area, you could see a spider-like pattern through the C-7.  He told me it was a fracture, and asked if I had ever been in a car accident or had any neck trauma.  Nope, not that I recall!  Upon further review of the MRI he noticed that there was also what looked like a fracture of the C-5.  WHAT?

In addition to that, he said that my spinal column is narrow.  Some people could have bulging disks and not be bothered by them.  But someone with a narrow spinal column has less space to spare.  Essentially, these 2 guys were wondering how I'd been walking around with this mess in my neck all this time.  They asked what my pain level was on a regular basis, and I said 4 to 5 on a scale of 1 to 10.  That doesn't include the days that I wake up near tears, unable to move my neck.  The PA told me that he had some neck problems from playing football as a kid, and if he was ever in "level 4" pain on a daily basis, he'd be sitting right where I was (in the consultation chair).

The good news is that they thought the surgeon could definitely help me.  In fact, the PA even said that he thought it would help the migraines also!  He seemed to think that the surgeon would find my case extremely interesting.  The only problem is that I have to get clearance from the Lyme specialist to have surgery, or I have to wait until after I'm finished with the treatment.  At least they will do all of the legwork to get clearance.

I know spine surgery is risky, but the pain I've been dealing with on a regular basis - in addition to my other health issues - can really make things difficult.  I spend so much time at PT, and yet the therapist doesn't know what to do with me anymore.  I'm willing to do anything now!

Which came first?

There is always the chicken and egg syndrome.  But that's really how I feel today.  At today's treatment, I had my bi-weekly appointment with the specialist, and met the new Physicians Assistant.  I forgot her name as soon as she told me - one of the drawbacks of Lyme, I can't remember anything anymore!  Anyway, the PA must have gone through my records pretty thoroughly, which is always nice.  She was checking me for my current sore throat, ear pain and swollen glands.  All of that started yesterday, and it's hard to imagine it could be a bacterial infection considering the amount of antibiotics I'm on.  During this time we were chatting about my fevers.  She asked if I kept my ovaries when I had the hysterectomy (yep, she was well prepared!), just to make sure that the fevers were related to the Lyme treatment and not hormonal.

She also was asking me about Fibromyalgia.  I told her I don't think that was the correct diagnosis.  She agreed, and pointed out that while we were talking she had been pressing on some of the tender points and they didn't hurt me at all.  She also mentioned the positive ANA and autoimmune test results in my file, and said that Lupus could still be a possibility.  The only way to really find out is to eliminate the Lyme and then see what issues I'm left with.  I've seen improvement in some areas, but not in others.  Although it can take time to see full improvement, even many months after treatment ends, it's possible that not everything is related to Lyme.

I've read a lot about people being diagnosed with Lyme and MS before finding out that what they really had was Lyme.  I pretty much figured that the diagnosis of Lyme disease explained away the other crazy test results that I've had.  Not that I'm worried too much right now, but it would be nice to know everything that I have to deal with.  Does Lyme lead to Lupus?  Or could it be a coincidence if someone has both?  Which came first?  Only time will tell.

PICC Pain

This PICC is a pain, literally.  For some reason, I keep getting a scab at the site.  The scab hurts whenever I move my arm.  Last week during the dressing change, the scab was ready to fall off so the nurse picked it off.  Then it hurt more during the week.  At yesterday's dressing change, there was a new scab which was worse.  I thought it would feel better once the scab was off so I let the nurse pick it off again.  Mistake.  More pain.  Today I started getting a stabbing pain on occasion.  What's up with that?

So I asked one of the nurses when this should start to feel more comfortable.  His answer was, "Right about the time you're done with treatment!"  Nice.

The house smells like homemade meatballs

Yes, I made meatballs, and the house smells wonderful!  I've been trying to cook more and more.  At least being able to work from home for now allows me to have some real meals.  Last week I made a quiche, and I've also made homemade soup and mashed red skin potatoes.  I'm even learning lots of cooking tips and ways to make healthy meals simple.

Since there's not much more to report on my treatments, I'm trying to focus on eating healthy and taking good care of myself.  The fevers are still constant and I still have a fair amount of lightheadedness.  My next appointment with the doctor is on Thursday so I will talk to him about my symptoms then.  I'm wondering if the ringing in my ears will EVER go away!

Trying to hang in there

I knew there would be ups and downs with how I feel.  I just wish this whole week wasn't a week of downs!  My fever is back with a vengence, and the lightheadedness has gotten a bit worse.  On top of that, the PICC is bothering me yesterday and today.  The dressing was changed yesterday, and the nurse pulled off a scab.  Since then it has been bothering me, so much so that today she changed the dressing today to try to make it feel better.  It's better than yesterday, but still hurts.  Oh well, still better than getting stuck every day.

Wish I had something positive to report today.  Instead, I just want to go to sleep.

A family affair

The whole family came with me to treatment today.  It was mostly a timing issue, because Jackson and I had to be there at 7:45 this morning for his appointment.  It was easier for us all to go, and I wanted to have Sean with me to hear whatever the doctor had to say about Jackson's tick bite.

The good news is that we caught and removed the tick before it had been attached long enough to cause Lyme disease.  According to the specialist, a tick needs to be attached for about 24 hours in order to transmit Lyme.  The infection comes from the tick's saliva, which isn't produced and injected into the host until after the tick has ingested the host's blood.  The saliva is produced from a reaction of the blood in the stomach.  Also, since we brought the tick with us, the doc was able to confirm that Sean did a good job at removing it.  He got the whole thing, including the mouth barb which is the part that hooks on and makes it difficult to remove.  Doc also let us know that it was a rather large, female, pregnant deer tick.  He could see 2 eggs.  Good - 3 less deer ticks in the world now!

What we don't know is if the tick was even carrying Lyme, or if it did have enough time to inject any "co-infections."  Lyme frequently is transmitted along with some other similar diseases.  Unfortunately, the tick does NOT need to be attached for as long to transmit these other infections.  As a side note, I tested positive for a co-infection called mycoplasma pneumoniae.  But the treatment is no different so it really makes no difference for me.  In Jackson's case, the doctor gave us an antibiotic just to be safe - 10 days of amoxicillan.  If we notice any symptoms, the doctor will extend the prescription.

I think the kids enjoyed being at the treatment center with me.  They got to sit in the big recliners and hang out.  Megan found a babydoll in the kids room to sit with and then cuddled up with it under a blanket.  They also got to have egg sandwiches from Dunkin Donuts for breakfast.

A week of migraines, and other stuff

Just when I thought things were going well, the migraines struck.  Today is day 7.  I've been waking up with them first thing in the morning, but thankfully they eventually go away with either Excedrin or my prescription meds.  If I still had a uterus, I would have known right away that it was "that time of the month."  Now, my only signal is a week or more of migraines!

This week was also full of fevers.  I keep reminding myself that it's a good sign, that my body is fighting off the infection.  I just would like it to end soon.  It's hard to function when you constantly feel feverish.  On the bright side, the lightheadedness continues to get better.  It's still there, but I continue to notice a difference.  When it hits now, I realize that it's been a while since I last felt it.  I'm exhausted right now, but I think that's a combination of the fevers and migraines, rather than the usual total exhaustion.

Unfortunately, Jackson found a tick on his shoulder yesterday.  In the midst of everything I'm going through, this was one of the scariest sights I've ever seen.  He was playing outside in the woods yesterday at a friend's house, and had been home for about 2 hours before he noticed it.  I have no idea how long it was on him since I don't know what time they were outside.  The only thing I do know is that it was definitely attached.  Sean removed it and I saved it in a container to show to my doctor.  The area was red last night, but I think that was more from removing the tick than anything else.  Right now it is less red than last night, but it's still red.  I am really hoping that it was not attached for long enough to cause a problem, and that it wasn't carrying Lyme.

Nurse Debbie

What a difference a nurse can make!  Once a week I have blood drawn and the dressing changed on the PICC.  Today was the day for the fun.  Debbie drew my blood when I got to the treatment center this morning.  No big deal, considering it's done through the PICC so I don't feel a thing.  We were chatting while she was taking the blood, and I told her that the area had started itching over the weekend.  I also mentioned that it still felt bruised, although it was tolerable.

Toward the end of my treatment, Debbie started to do my dressing change.  I told her how much it had hurt last week when the other nurse took the tape off.  Thankfully, she used alcohol swabs to help ease the tape off.  She also grumbled when she saw how much tape the other nurse had used.  As she was taking everything off, we realized why it had been hurting so much all week.  There was a scab around the end of the PICC that was not only stuck to me, but was also stuck to the gauze.  Every time I moved, it was pulling my skin instead of moving freely.

Debbie cleaned everything off and made sure that there was no more bleeding.  She used much less tape, and a hypo-allergenic tape window so hopefully I won't have any itching this time.  I swear, the pain was nearly gone once she got it all back together properly.  I told her that she's doing my dressing changes from now on.  : )

In other news, my fever is back today.  Although I've regained some of my energy, this is all still very draining especially since I'm trying to fit a full time job in at the same time.  And, even though the snow hasn't finished melting yet, it looks like allergy season has begun!

Dare I say it?

I feel slightly more human.  There, I said it.  The lightheadedness has gotten MUCH better.  My neck pain is better, too.  Not gone, but better.  I'll take every little improvement I can get.  I am still exhausted, but I think I'm functioning better than before considering I have stopped taking the medication that was supposed to be helping with the fatigue.  In fact, I've stopped taking several medications.  No more Fibromyalgia meds... they weren't doing anything anyway.  I don't remember the last time I needed migraine meds (hope I didn't just jinx myself!).  My fever is also lower the last 2 days.  I was running pretty consistently around 99.5, and now I'm back to about 98.6.  That's still high for me, but better.

That said, my stomach is a bit of a mess from all of the antibiotics but that is to be expected.  I've only had 4 treatments so I still have much more to go.  Considering I'm already seeing improvement, I'm happy with how things are going.  The drive to the treatment center is a bit much but right now it's worth it.  Anything to get my life back!

The PICC is still annoying but that beats being stuck every day.  It mostly hurts right around where it goes into my arm.  It feels bruised.  The nurses keep assuring me that it will get better, and I believe them because it's a little better each day.  I take ibuprofen when it gets bad (usually around bedtime) and put heat on it during the day.

Progress, finally!

One down, 55 to go!

I'm supposed to have a total of 56 treatments, unless my blood tests show that I am "cured" sooner.  Technically, it's 2 months of treatment, but given that it's only Monday through Friday, it makes the total time closer to 3 months.  3 days a week I take an additional oral antibiotic, and on the weekends I take ANOTHER oral antibiotic.  Goodness!

Treatment #1 was today.  First, the nurse drew blood.  It's kind of nice having the PICC because they can take blood right from there without having to stick me again.  Then I sat in a comfy recliner for an hour while the IV dripped.  I had my laptop and was able to work the whole time.  After my treatment, the nurse changed the dressing on the PICC.  Thankfully this will only occur once a week because that was the worst part!  Ripping off all that tape, then swabbing (or, stinging) with alcohol, and finally rubbing the area that is bruised with betadine.  Not much fun but I lived through it.  The nurse was actually laughing at me, saying he had never seen anyone react to tape removal like I did.  It HURT!

As for the PICC, well it almost made me pass out last night.  My arm was feeling ok, so when I went to change into my pajamas I thought I would show Sean what it looks like (still covered with tape, but I knew he'd want to see).  I had just taken the mesh covering off and was moving my arm around a bit when I started to feel cold and clammy.  I could feel the blood draining from my head so I quickly went to lay down.  Thankfully, that passed but my arm was hurting when I went to sleep.  I took some ibuprofen and propped my arm up on an extra pillow to avoid leaning *that vein* on anything.  I guess the ibuprofen worked because I woke up with less pain.  It still feels bruised today, but the nurses said that as it heals it will feel better.  Call me crazy, but I feel like I can tell exactly where it is in my body.

Here we go...

Since my last update, I had an appointment with the 2nd specialist and didn't like him.  So, I set the plan in place to treat with the initial doctor.  Today I had a PICC inserted, and tomorrow I'll go back for my first treatment.  Having the PICC put in wasn't a huge deal, although it was (and still is) a bit uncomfortable.  I'm sure I'll get used to it.  The idea of a catheter that goes through your arm and into your chest is kind of odd but once you get passed that it's no big deal.

Off to rest now.  I'm a bit exhausted from a busy weekend.  At least I was surrounded by family and friends, which kept my mind off of any possible anxiety.  I'll deal with my pink living room another day.  It basically turned pink when Megan opened up all of her birthday presents yesterday!

Up and down

I guess the variation in symptoms is better than having them all the time, all at once.  Being lightheaded comes and goes; today happens to be a day where it's here.  I also feel somewhat feverish today.  Yesterday I had a sore throat.  I don't know if that's related or a totally different issue.  It's all a guessing game right now!

On Tuesday, I have an appointment with a local Lyme specialist.  The initial place I went is almost an hour away, so if I can find someone more local to treat me, it would be very helpful!  Worst case scenario, my next follow up with the initial doctor is on Wednesday.  Hopefully by the end of the week I will have a full treatment plan in place.

Too good to be true

The lightheadedness is back today, along with a fever.  I happened to have an appointment with my primary doc this morning, and she confirmed that all of this could be from the antibiotic.  She said to expect ups and downs from the "herxing", and new symptoms may appear also.  As long as the end result is better overall, I'll just have to wait it out.  It wasn't a short process to get to this point, and I doubt it will be a short process to rid my body of all of this.

Progress report: The good and the bad

I've been on the oral antibiotic for about 4 days now.  On the 3rd day, I noticed a drastic decrease in my lightheadedness.  It's still there, but much less disruptive than it had been for the previous 2 weeks.  That's the good news.

The bad news is that my neck/back pain has been much worse than usual.  Every muscle is tight.  I have pain shooting down my left arm.  Thankfully my PT was able to help lessen the pain today.  Hopefully it will go away soon.  I know that it's possible to have a "herximer reaction" to the medication, and I'm guessing that is what I'm experiencing.  "Herxing" is when you're killing off the bacteria faster than your body can eliminate it from your system.  This causes you to feel worse before feeling better.

If the end result is that I will ultimately feel better, I'll work through this for a little while.  At least I can function better when I'm not so lightheaded!

A little ray of sunshine

Yesterday was the follow-up with the Lyme specialist.  I was kind of disappointed to find out that my test results didn't give a concrete answer, considering if I have Lyme, at least it's treatable.  But it seems that Lyme is such a tricky disease that you can't base diagnosis on test results alone.  Once it becomes cronic (if it's not caught in the first few weeks), it is less likely that the antibodies will show up in blood tests.  Thankfully, the doctor was interpreting my results along with my history and symptoms.  He is confident that I DO have Lyme, and that I should respond to treatment.  The one marker that keeps showing up as positive is a Lyme-specific marker, meaning that there is no other bacteria that would cause this positive result.  Some of the other markers could show as positive if you have other illnesses - everything from syphillis to gingivitis.  Considering I have a marker that only indicates Lyme, the doctor is willing to treat me.

So the good news is that I'm being treated.  The bad news is that this may require 1 to 2 months of antibiotic treatment.  For now, he started me on an oral antibiotic and he drew some more blood.  I will go back in 2 weeks to discuss how the antibiotic is working (it's already doing a number on my stomach!) and to figure out the plan from there.

Here's to hoping that I've found the right answer this time!

Is there a light at the end of the tunnel?

The last few weeks have been nothing short of frustrating.  I've been lightheaded more often than not, with the ear pain and tinnitus increasing as well.  The lightheaded feeling is very awkward.  It's almost like I'm floating, and my head goes numb in flashes.  The more severe flashes are actually making even my hands feel numb.  It's very bad in the mornings, seems to lessen in the afternoons, and comes back full force in the evenings.  It's actually scary to drive when I feel like this.

I called the Lyme specialist earlier in the week and they hadn't received my test results yet.  So today I turned to my neurologist, hoping that SOMEONE would have an answer or at least a way to deal with this.  The neuro had nothing.  Her only suggestion was a spinal tap to check for Lyme.  Yikes!  She suggested that I call the Lyme doc again and see if there is any way to put a rush on my tests given my symptoms of late.

Thankfully, I called at just the right time.  It looks like my results are in, and the doc had a list of 5 people who were trying to move their appointments up.  There just happened to be a cancellation for tomorrow afternoon, and since I called (before they got a chance to decide which of the 5 people they should call first) I got the appointment.

So, cross your fingers, toes, whatever, and hope that I can finally get some answers tomorrow.  I need to start moving in the right direction, quickly!

It's all so confusing!

All of my symptoms are related to one another, and every diagnosis that I've received overlaps with the last one.  The problem is that I can't seem to get to the root cause of all of this and find a treatment that will make it better.  I don't really care what name it goes by.  I just need to find the underlying common denominator and treat THAT, instead of treating each individual symptom which has been getting me nowhere for the last several years.

On Monday I had a consultation with a Lyme specialist.  It was an interesting appointment, and the doctor explained a lot of things.  Many of my previous diagnoses can be related to Lyme, including POTS, autoimmune hypothyroid, and IBS.  One interesting thing that the doctor pointed out is that Fibromyalgia is "pain without inflammation," while Lyme would include inflammation.  I definitely have inflammation.  Maybe that would explain why I didn't respond to the FM medications at all.

The doctor also confirmed what I had read about my Lyme blood test results - that the band I tested positive for is only indicative of Lyme, even though it is not a technical "positive" result based on the CDC criteria.  Multiple bands need to show as positive for a technically positive result, which doesn't really make much sense considering many of the other bands could be positive for reasons other than Lyme.  Some of them show positive in a majority of the population even though most people don't have Lyme, and some could be positive if you have gingivitis!  Another interesting fact is that once Lyme becomes chronic (not a brand new infection), it is no longer in your bloodstream.  It moves into your cells, since that is what it feeds off of.  Again, it makes sense that someone who has a blood test shortly after noticing a tick bite will test positive with no question, but someone with an advanced stage of Lyme will not show positive on a blood test.

For now, the doctor drew more blood to retest with more sensitive tests.  I'll have to wait for those results before he can decide if he'll treat me for Lyme or not.  In the mean time, he also mentioned something about Vitamin D in autoimmune disorders, and that supplementation may actually be BAD for you.  So, I did my own research and came across some articles explaining why.  It's difficult to explain, but essentially your body produces what it needs, and additional Vitamin D can act to suppress the immune system, further decreasing your body's ability to fight off whatever it encounters.  In my case, it makes a lot of sense.  It explains why my body has reacted negatively every time I've tried to supplement with Vitamin D.  It may not be the most accepted answer in the medical community, but I listen to my body and consider that my own research.

Today I'm home sick.  (Surprised?  Didn't think so.)  I've been having awful bouts with ear pain in the left ear, and migraines on top of that.  This all needs to STOP!  I'm doing absolutely everything I can to get myself better, and instead I feel like I'm only getting worse.  Well, at least I know that I haven't found the answer yet.  The search continues.

More bad news, or a breakthrough?

On Tuesday, I had a follow up appointment with my ENT.  We were following up on the tinnitus in my left ear, since about a month ago he had put me on a mild diuretic hoping to reduce any fluid in my ear.  I realized fairly quickly that I wasn't going to be able to tolerate the diuretic, but I gave it 3 weeks.  Not only did it make me feel completely dehydrated (duh), it was also lowering my blood pressure and making me dizzy.  Considering I already take medication to RAISE my blood pressure, I knew this wasn't going to be a good choice unless I was seeing a dramatic difference in the tinnitus.

I saw no difference in the ringing after 3 weeks, so I stopped taking the medication.  At Tuesday's appointment, we discussed the options from here.  The first thing the doctor wanted to do was test my hearing again to see if there has been any change.  I was skeptical at the need for this because I feel like my hearing is fine, but the damn ringing needs to stop, and the occasional pain and dizziness, too.  Anyway, I reluctantly agreed to come back the next day for the hearing test (I had already waited an hour and 15 minutes to see the doctor, and I had a migraine, so I didn't want to do the test that day).  The doctor promised to call me the day after the hearing test (which would be today) to decide on the options we had discussed.

The options were: 1) a shot of a steroid in my ear - not very appealing to me, especially since the oral steroid hadn't made any difference; 2) a much stronger diuretic which is shorter lasting, with hourly hearing tests to see if the diuretic makes any difference; 3) a trial of doxycycline, which is an antibiotic used to treat Lyme disease.

The hearing test was at 1:00 yesterday.  At 5:05, as I was getting in my car to leave work, the doctor called me on my cell phone with the results.  He (and I) was surprised to see that in just 2 months since my last hearing test, the hearing in my left ear had in fact declined.  Don't get me wrong, it's not a dramatic difference or anything that I would notice.  But the difference between my ears has increased.

The doctor's suggestion was to go with the trial of doxycycline.  Based on my collection of symptoms, including the tinnitus and hearing decline, a diagnosis of Lyme makes a lot of sense - but like everything else in my medical history, the test results don't confirm this 100%.  While I agree that I might benefit from the antibiotic, I actually want to be sure that it is the APPROPRIATE treatment if I do have Lyme.  Coincidentally, I have an appointment to see a Lyme specialist on Monday.  I mentioned this to the ENT and asked if he minded if I opted to wait to see what the specialist has to say.  He was fine with that, and said that if they opt not to treat me, he would still like me to try at least 2 weeks of the antibiotic so I should call him next week and let him know what they say.  He also asked me to make sure I talk to them about the decline in hearing.

So, while it's not great news that my hearing is declining, I am really hoping that this is putting me on the right track for diagnosis and proper treatment.  Things only seem to be getting worse lately so this could be my silver lining.  I'm a bit anxious for my consultation on Monday afternoon!

It's a new year

I am hoping for great things in 2011. So far, I'm not off to a great start. After being home with my sick daughter over Christmas weekend, we changed our travel plans just in time for me to get sick. It started with a cough, which was annoying at best. That kept me up at night so it was followed by a sore throat and ear pain. A few migraines were thrown into the mix, plus working, finishing shopping, and traveling and staying up late.

So, here I am with all of the aforementioned ailments, and feeling feverish. The good news is that I had a scheduled "family sick day" today to take Sean to an appointment, but it still required getting up early, getting the kids ready and off to school, and then getting to Sean's appointment on time. I've been sitting in the waiting room wishing I could just go to sleep.

It's been a week since I've been to physical therapy and I have an appointment today that I really need. But once I get home I'm not sure I'll be able to drag myself back out of bed to get there. And if I can drag myself out, I'm wondering if