IGeneX Results

Multiplex PCR: Negative
IgM Western Blot: Negative, with a positive (3+) 41 kDa and Indeterminate 23-25 kDa, 31 kDa, 39 kDa and 83-93 kDa.
IgG Western Blot: Negative, with a positive (2+) 41 kDa and Indeterminate 31 kDa.

Overall, it's negative according to the CDC and IgeneX.  A positive western blot has 2 or more positive strands in either the IgM wb or the IgG wb (according to IgeneX, not the CDC).  Usually, a positive IgM is a sign of a current infection, and a positive IgG is a sign of a past infection.  It can also be positive in both tests.  IGeneX suggests that if you have one positive or indeterminate strand in either the IgM or IgG, you should be retested.  That's where we're stuck, because I have one positive and four indeterminate strands in just the IgM WB.  The reason IGeneX suggests retesting is because the Lyme antibodies aren't always present in the patient's blood.  Borrelia burgdorferi (the Lyme bacteria) is very good at hiding in other parts of the body, which makes diagnosing Lyme extremely difficult.  Unfortunately, the IGeneX test that I already had done once costs over $400 (insurance doesn't cover it), so we're still trying to decide what to do.  We're open to the fact that I might not have Lyme, but we also don't feel comfortable completely forgetting about a disease that doesn't have any accurate tests.

Hopefully, I'll be able to get into the neurologist quickly and we can go from there.  A neurologist should be very knowledgeable about neuroborreliosis (the neurological disorder caused by Lyme), so we're hoping that whoever I end up seeing will have that in mind while looking for other things, too.

If everything that I just wrote makes absolutely no sense, Columbia University's website on Lyme Disease research is very helpful!

Some test results

I had my appointment to go over test results with the rhuematologist today!  We talked about the ultra sound of my lymph nodes, the MRIs of my knee and leg, and the IGeneX results.

My lymph node ultra sound came back "beautiful." I had already told the doctor that they weren't swollen or painful that day, so I wasn't surprised.  No tumors, malignancies or anything like that.

My MRI showed NOTHING.  We were hoping that it'd show fluid, which would mean that the lump is a cyst, but... nothing.  The PA went through the good news first - it didn't show a tumor, muscle mass, or anything that could be malignant.  Then she said that because there's obviously something there, the next step is... surgery (or in her words "cut it out and stick it under a microscope").  It would be a pretty big incision from the lower part of my hamstring to the top of my calf, and the recovery is long.  She's sending a referral to my Internist for me to see a surgeon.  However, this doesn't mean I'm definitely having surgery (I've had visits to the surgeon that don't result in surgery!).  They haven't even done a biopsy of it yet, and that would probably tell them what it is.  I hope.

Aaaaaannnd.... the IGeneX results..... AREN'T BACK YET!  However, IGeneX has confirmed that the test was finished yesterday and the results are being faxed today!  It was weird... the PA said that they were being faxed when she walked in at the beginning of the appointment, but they still aren't back.  This lady seemed to be a very good PA, but she was still clueless about Lyme.  She was talking about how my last blood work came back very good, which makes her nearly positive that it's not Lyme.  That's not true at all.  We know it's possible that Lyme isn't the culprit, but we know enough about it to get frustrated about how clueless the doctors are about it.

My newest symptom has been jaw pain, so the PA checked that out a little bit.  She asked if it hurt at all at the time, and just as I was saying "no," she pressed on it and my "no" came out as "n-OWW YES."  Then, she asked if it was clicking at all, and once again I said "no" and then it did a nice little click.  It was nice to have things happen while I was at the doctors for once!  She said I'm having some TMJ issues, but she doesn't know if it has to do with everything else.

If the IGeneX test comes back negative, I'll be getting referred off to a Hematologist ("blood doctor") and Neurologist.  Until then... we wait some more.

A Birthday Post!

I'm sorry I haven't posted in awhile!  It's so hard to concentrate.  I'm doing okay... I definitely have my ups and downs.  We have yet to find out the Lyme Disease test results, and I'm getting VERY sick of not knowing what's wrong.  It's so easy for me to assume that it's Lyme Disease at this point, so I have to keep in mind that it might not be.  I'm seeing the rheumatologist on Tuesday, and we're going to be going over some test results, so maayyyyybeee we'll have some answers after that!  I do have some more symptoms popping up, but I'll explain those in another post... because I'd rather write about fun things like birthdays right now.

Today is my 21st birthday, and my brother and sister-in-law came home to celebrate with us!  My parents made an awesome gluten/soy/dairy free birthday dinner of.... meat loaf!  I LOVE my mom's meat loaf, and I haven't had it since I've been off of soy and gluten, so it was my dinner of choice.  She also made carrot cake cup cakes that I could have!  I love having family dinners, because my family is crazy and we laugh a lot.  We had a great time... so great, that we broke a bowl in half!

Naturally, we just used the 2 halves of the bowl and didn't clean up until after.

I'll put up some more pictures (other than broken bowls) and stuff later.  My brain is NOT working, but I wanted to at least post something!

Update

So much for posting an update on Friday!  I've been very sick, but I'm feeling better today.  I saw my Internist on Friday.  We were trying to figure out if I had the flu or not.  Even though I was in a ton of pain on Wednesday and Thursday, we don't think it was the flu (and neither does my internist).  It's hard to tell, because I have a lot of "flu symptoms" anyways, and on my really bad days I do feel like I have the flu.  However, I've also been having headaches everyday for the past month or so, and my doctor noticed that my sinuses are completely full.  He's treating me as if I've had a sinus infection for a month and he put me on more antibiotics and some other meds.  I also have to squirt 8oz of stuff up my nose twice a day... gross (it's actually kind of funny...)!

I started the antibiotics on Friday.  I felt terrible Friday night, and I had to use my nebulizer because I was having a hard time breathing.  My heart rate randomly jumped up to 130 earlier that night, which was freaky.  It happened another time last week too, but I didn't check my pulse the first time to see what it was.  I still felt pretty terrible yesterday and my fever was still high, but it's back to my normal low grade fever today.  I'd write more, but I can't concentrate... and the SU game is on!

P.S. We are STILL waiting on the blood test results...

Bonding at the Medical Center

My fever is 102 again today, which means... a visit with the Internist tomorrow.  I had my MRI last night, so I'm hoping he'll have those results by the time I see him tomorrow.  I don't mind MRIs because they don't hurt like a lot of other tests that I've had done, but it was weird being there at night.  It took awhile because I had to have two of them - one for my leg, and one for my knee.  During the first one I was pretty happy because I was listening to the radio and the lady would cut in every now and then and say "You're doing great, only a few more minutes!"  It reminded me of an interval workout!  I also enjoyed the fan blowing on me because I was sweaty from the fever.  However, by the second one I started throwing my self a little "pity party."  I've been getting very sick of spending so much time going to the doctors and having tests done.  I wanted to go do homework or whatever a healthy 20 year old should be doing.  Thinking like that isn't helpful at all, and I try not to... but there's something about laying in an MRI machine at 7:30pm that makes you really not want to be there!  When I walked back out into the waiting room, there was a little boy with crutches waiting to come in.  He was nervous about the MRI and asked me what it was like.  I told him that it wasn't that bad and that you get to listen to music while you're in it.  After we talked about MRIs, he asked me what was wrong with me.  I explained the lump behind my leg, and how I've been sick for a very long time.  He told me that he fell through a bed!  I'm not quite sure how he managed that, but being able to make him feel a little better about his MRI made me feel much better about spending my evening at a medical center.

I got a package in the mail from friends at school!  I was super excited when I saw a box in our mailbox!  It also feels like spring, which makes me very happy.  I'll post an update sometime after my appointment tomorrow...

After 155 days...

... my temperature has finally decided not to be 100... and to go up to 102 instead.  Thankfully, I have swimming lessons today.  Getting in the pool works better than taking Tylenol!  It's like I get a boost of energy as soon as I jump in!  I'll probably take it easy for the rest of the day after that.  It's hard to balance doing enough to keep me sane with resting. 

In case you're wondering why/how I know exactly how many days I've had a low grade fever:  my doctor noticed it in October (October 13th, to be exact), and then I still had it 3 weeks later, so he told me to keep a notebook with my temperature and all of my symptoms in it.  We had no idea the fever would last this long!  I have an MRI of my leg tonight, so hopefully I won't get any more sick before then.  We're also hoping that this is just from whatever's already going on with me and not a virus or something, because my immune system is already stressed as it is.  We will see...


P.S. No word on the test results yet... besides a bill from IGeneX.

March Madness!

The past few days have been crazy!  I went to Rochester on Sunday for the annual "Cross Country Banquet."  I was super nervous, but it went better than I expected!  I was able to spend some time with my coaches before and after everyone came, which made things much easier.  Little things help a lot... like seeing my coach switch from "cross country mode" to making little derby cars with his kids.  I did love seeing the team because I've missed them a lot, and I'm not as sad about not running anymore so it wasn't as hard as the track meet that I went to back in January.

I talked to the nurse at the Arthritis place about the IGeneX test yesterday.  It's not back yet, but they'll call when it is.  I'm trying very hard to be patient... but it's hard! 

One of the things that I do to make being sick less depressing is try things that I normally don't get to do... so... I'm joining the March Madness fun and making a bracket.  I honestly have no idea what I'm doing.  I'm probably going to end up filling it out based on things like colors, mascots, and which state I'd rather live in... but hey, it'll be fun to see what happens!

And... more waiting.

Still no word from the doctors about my blood test.  I'm really hoping that I hear something today, otherwise we have to wait until next week.  I had my lymph nodes ultra sounded yesterday, but it was weird.  It was a lot quicker than all of my other ultra sounds, and she didn't take very many pictures.  She did happen to leave the pictures up on the screen while she was waiting for me to come out, so I couldn't help but look at them!  They never make any sense though.  They're always just a bunch of blobs that I don't understand.  I have to admit, sitting in the waiting room and watching everyone drink nasty stuff for the different tests that they were having done made me very thankful that it wasn't me drinking it this time!  That's why I like ultra sounds so much, they don't hurt and I don't have to drink anything yucky!

I've been in a lot of pain for the past couple of days again.  My legs feel really weak, and it was hard to sleep last night because they were hurting so bad.  I get to go swimming today though, and that always seems to make things better. =)  The nights when I'm in a lot of pain are always the worst.  The pain keeps me awake, and being awake makes me think way too much about everything that's going on.  It makes me realize how much I miss going to school and being healthy.  Thankfully, I'm always much better in the morning, even if I'm still in pain.  I'm a morning person, so I tend to be much more cheery when I wake up than when I'm trying to sleep but can't!  When I woke up and was doing my devotions, I felt much more at peace about everything.  It's still hard, but I know that God has a plan and that He's listening to my prayers.  I also woke up to a pile of "Get Well" cards and letters on my floor that I'm getting ready to hang up on my wall!  I took down a big poster of some random person running to make room for them.  I do hope to be running again some day, but I'd rather wake up to encouragement from my friends right now than some running poster that has a person I've never heard of on it.  Thank you to everyone who's sent me mail, emails, text messages, and encouraging comments!  It really means a lot!

More waiting...

My test results from IGeneX are supposed to be coming back any day now.  It's nerve-wracking.  Of course, I desperately want a diagnosis so that I can start treatment for whatever it is.  However, Lyme Disease isn't something that anybody wants to have.  Obviously, I'd rather not be sick at all in the first place, but when we're trying to put a name to something that I already have... I'd much rather have something that doctors actually know how to treat.  Doctors are getting their licenses taken away for treating Lyme Disease with long term antibiotics.  Insurance companies don't like to cover chronic Lyme expenses.  People fight over whether or not the tests are accurate.  People fight over whether or not it's real.  It's ridiculous!

Then again, being diagnosed would be much better than being undiagnosed.  So, if it's positive... we'll have the whole "undiagnosed" load off of our shoulders, which will be great.  Lyme isn't fun, but I'll know what I'm fighting.

For now... we wait for that phone call.  Whatever we find out, God is still in control.  I have my lymph node ultrasound on Thursday, but hopefully the next post will be about the lab results!

Let's pack up and move to California

My rheumatologist had me come in yesterday instead of waiting another 2 weeks... it was a nice surprise!  After a few days of confusion about the IGeneX lab test, they almost knew what they were doing this time. Almost.  They had the wrong blood test circled on the sheet, but my dad noticed (I was preoccupied with the "on a scale of 1-5, how severe is each symptom" paper... those things drive me crazy), and everything was fixed.  My blood will be in California today.  That's kinda cool.  This doctor wants me to have an ultra sound and a biopsy of my left inguinal lymph nodes because they're swollen and tender again, but we have to wait to hear back from him.  He also wants an MRI and biopsy of my right leg so that he can find out whether my "cyst" is a cyst or not.  We have to wait and hear back from him on that too... apparently he has to get everything approved first before he sends me off to get a bunch of tests done.

The past few days have had their ups and downs.  The "spring session" swimming lessons started yesterday and it's the same group of people from my winter lessons, so that's exciting!  I didn't get to go bowling over the weekend like I wanted to because I was too sick.  I've lost more weight, and I've been having more abdominal pain and headaches.  Seeing as I've been off of all of my meds for a few weeks now, we know that it's not "drug fever" (if that's even a real thing...) or any other side effect.  However, it's still nice to be off of everything... at least for a little while.  A break from my weekly pill sorter thing is always nice. :)

As frustrating as this is, having my appointment get moved up 2 weeks and hearing the doctor say that there are still more tests that need to be done made us feel a lot better.  The doctors are finally getting desperate for answers too, which is always helpful.  Hopefully one of those tests or the IGeneX test will give us some answers...