In a Nutshell

I went to my highly anticipated doctor’s visit in Orlando today, and got the results back from all the tests.  I have chronic Lyme Disease.  A pretty bad case, as far as Lyme Disease goes.  I’ve likely had it for a couple of years, since it as advanced as it appears.

I began having knee issues in January, after a bout with a viral flu in December. Which likely kicked everything into gear.   And then because of the two (unnecessary) knee surgeries, the infection spread like wildfire to many other joints and soft tissue.  It’s even present in my blood.

When he told me, I cried.  And the only thing I could think of to say was, “I’m not crazy.”

Well.  There was at least one other person in the room who could have successfully argued that point, but he had the good sense to remain silent.

My doctor told me that I have a very long road ahead of me, likely 3 to 12 months of treatment, but it IS CURABLE.  Sadly, he said that it will likely get worse before it gets better because of the die-off factor as we’re treating the Lyme.  Boo hoo.

I have a whole lot of other issues going on in my adrenal glands, liver, digestive system, etc. which we have to tackle in the next few weeks before we can even begin to address the Lyme Disease.  I will be on an antibiotic for the next 5 days, plus some supplements that will directly address some of the other problems.  I also had intravenous vitamin therapy today, which if it helps me to feel better, will continue weekly for the next few weeks.

Interestingly, I learned that because of the severity of the disease, it really does not matter what I eat at this point.  It won’t help.  I’m not going to use that as a license to go crazy.  I KNOW!  It’s awfully tempting.  I’m going to continue to avoid those foods that I have an intolerance to, and I’ll continue on a mostly plant based diet.

BUT I GET TO HAVE COFFEE!  My doctor said that I will likely need it in the morning to counteract the MUSCLE RELAXANT that he’s prescribed to help me sleep.  Pain management will be key to getting me through the next few months.

I feel strangely vindicated.  I knew it was a system wide infection.  And I also knew in my heart that it was not Rheumatoid Arthritis.

I’m hugely relieved to now know what I’m fighting.  Thank you all so much for your continued encouragement and prayers!

I’m going to take a long weekend and digest everything I’m learning.

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Oh, and don’t forget that I still have a $100 Visa Gift card giveaway going on through 12/31, courtesy of BlogHer and Welch’s!

Have a wonderful and blessed Thanksgiving weekend!

51 Responses to In a Nutshell

  • Wow! What a fabulous Thanksgiving gift!

    So glad you have answers and it’s CURABLE! 🙂

    Enjoy your long weekend, maybe even a little taste of choco-vino! 😉

  • Hooray!!! I mean, not hooray that it’s Lyme Disease, or that it’s going to get worse before it gets better, but hurray that you finally KNOW WHAT IT IS! And it’s curable! And you’re not crazy! Well…you’re sorta crazy…but in a lovable way.

    My thoughts and prayers will continue to be with you. But now you have a plan of attack to get rid of this. And you can drink coffee! And Chocovine I hope!

  • Praise God for an answer finally. May your coffee bring you much delight. And I’ll be praying the road to being cured is more of a 3 month one than a twelve month. But however long I’m so glad you’re on it.

  • So glad you finally have the answers you have been seeking. And a treatment plan. And a curable illness! Many reasons to be thankful. Happy Thanksgiving!

  • God bless you Dee Dee….what a journey you’ve been on. I’m so thankful that you know what’s going on. I will continue to pray for you.
    Enjoy your Thanksgiving and your coffee!

  • Great news! Enjoy your coffee!

    {we know you’re not crazy} 😀

  • So sorry about the long road ahead of you, but I am so glad you have some answers and that it’s curable!! I’ll pray for you as you get ready to tackle this thing head-on.

  • Way back when I was pregnant, I was in for my second ultrasound. The big one where we would find out the boy/girl question. The tech said that the mother always knows which she is having before they even start putting on the goop. Deep down, she just *knows*.

    It’s always good to listen to yourself, because you’re the one who *knows*. In ways that no one else can. I’m so glad you have an official diagnosis, an official treatment plan, official permission to eat what you want, and official confirmation that you really DO know what you’re talking about!

    Now if he can just tell that to your kids…

  • So, so glad that you HAVE AN ANSWER.

    Huge praise!

  • Bless God! I know there is still plenty of road ahead for prayer, but it is so good to have an answer for now. You are definitely NOT crazy, but you’ve been so encouraging to us as you’ve walked this journey. Press on!

  • I am so glad you finally have a set diagnosis, and a treatment plan.

  • Very happy you have an answer. Sorry that you have along road ahead of you, but I’m sure you will face this with the courage that you have shown for a while. Praying for you.

  • I am very glad for you that you have a diagnosis of something that can be treated and cured. Somehow, I have suspected you had Lyme disease all along. I do wonder why it is so hard to diagnose. So good you persisted with this doctor’s tests. All the best for your treatment, and I hope it does better than you expect.
    Happy Thanksgiving!

  • So glad you finally have a plan of action in place.

    I’m curious though – I’ve heard this before, but my understanding of Lyme’s disease is that it has to enter the body somehow. One of my acquaintances from long ago had it, and it resulted in her baby boy dying because the Dr’s couldn’t figure out what was going on until after his death. Here’s the catcher – she was never bit by a tick. So I’m curious about where this developed? Was it as a result of a tick bite? Perhaps you chatted with your Dr about this?

    Again, even though you have a long road ahead of you, I’m so glad that you are on the path of healing. Praise God.

  • Oh…Thank you Lord for a diagnosis! Isn’t it so wonderful to know you’re not cuckoo!?! That’s great news and we’ll continue to pray. Happy Thanksgiving!!

  • So glad you’ve got your diagnosis! Happy Thanksgiving!

  • Happy Thanksgiving to you all. So glad you have an answer and can move forward with the correct treatment. I know that you will stay strong and that your support system is in place. Best wishes as you travel down this long road. Blessings.

  • Well you have something to be thankful for this day for sure. You can now be on the right road, so enjoy your coffee (or even a second cup) and sing and be happy. We all knew you were not “completely” nuts.

  • so glad it is something that is curable! All my best wishes for a swift recovery and I hope you don’t have too great an ordeal. I am sending virtual hugs to you all.

  • I’m tearing up here. Thanks be to God. You’re not crazy. You’re not crazy!
    Thank you for your inspiration to keep pressing on and pressing through and insisting that you get an answer.
    Praying that you have a wonderful Thanksgiving!

  • I KNEW it! I knew when you kept talking about joint pain it sounded like Lyme disease (my aunt had it years ago). So glad you have an accurate diagnosis and that there’s a light at the end of the tunnel!

  • How weird is it that having Lyme disease is good news? But it is, and I’m thanking God with you. Get well soon, and enjoy your Thanksgiving…and your coffee!

  • Wellcome to the Mad, bad, World of Lyme Disease, you and your friends will never believe what is and has been gouing on for years in denying this illness which means thousands of patients World wide are failing to be diagnosed and properly treated.

    You have a lot to read about Lyme and there are many good charities around to support you. Try taking your local doctor on your journey with you s/he will never guess the controversy surrounding this illness.

    Hopefully your recovery is good but even so we are talking many months.

    Best wishes

  • It’s a testament to your misery that LYME disease is practically good news.

    ((fiddledee)) Praying for you this morning.

  • Oh, Dee, you are SO in my prayers. Congrats (?) on the diagnosis. And thanks for teaching me to laugh in the hard times. Have a wonderful Thanksgiving. You are such a blessing to so many, especially me!

  • I am thankful with you for the knowledge and now power for positive treatment options you have received. A long toad is not near so long when you have an end in sight. and your end is a flashing marquee of CURABLE. Have a joyous Thanksgiving with your family.

  • I’m so glad the doctors figured out what was going on and that it’s curable. You have had a rough time to say the least! Have a happy Thanksgiving!

  • So glad you have a diagnosis. Such a relief hmm? So glad you can have coffee. 🙂 I’m so so glad there is an end to it all for you. Praise God. Prayers and have a great day today.

  • I am so glad you have a diagnosis. Such a relief hmm? So glad you can have coffee. 🙂 I’m so so glad there is an end to it all for you. Praise God. Prayers and have a great day today. Reading this over it seems that I am just plain GLAD for you!

  • Dee, I’m so happy about your diagnosis! Prayers from all of us were definitely answered. And I ‘m so glad you get to eat normally, that will really help your mental health. I hope your Thanksgiving is blessed and Happy! And I wish I could give you a big hug. You will get through this! God Bless!

  • I am so happy and relieved for you, DeeDee, despite Knowing the road ahead will be difficult. The word CURABLE will help you endure the pain. Just knowing you’ll be able to walk and run with your kids and Tom — oh, make that Fiddledaddy, who’s also in our prayers. (Caretakers have it rough!)
    Love from us both,
    Joan and Dick

  • I’m so glad you got some answers. So, so glad.

  • Fantastic news! At least you know what you are facing now! Praise God!

  • *Here’s* to getting better!!! Happy Thanksgiving!!!

  • PS. I have a friend who is going through something very similar to your saga, who has also been diagnosed with RA. What’s the name of the test you had to determine you had Lyme? I’d like to ask her if she’s had it.

    • Oh my gosh, Karen, tell her to get tested. The test that she needs to take is the IgenX test. Here is their website: http://igenex.com/Website/

      They specialize in what to look for in Lyme. The test takes about 3 weeks, and is shipped off to California to their lab. A local simple blood test usually does not catch Lyme. Lyme is difficult to diagnose, because it is sneaky, and can look like many other types of infections. It’s not a cheap test, but have your friend check with her doctor to get it. And tell her to keep looking for a doctor until she finds one that will listen to her.

      So many doctors are far too quick to slap a diagnosis of RA on a patient with joint inflammation.

      I’ll step down off of my soapbox now. 🙂 And HAPPY THANKSGIVING!!!

      But really, let me know what you find out from your friend. I’m going to write a page on my blog dedicated to Lyme. I’m pretty sure this is my calling now.

  • so glad you finally have an answer to your health issues. will be praying for u and ur family

  • So glad you finally know what is going on and can see the light at the end of the tunnel. I’ll be praying for you and your family on this road ahead.
    Blessings!

  • I’m so glad you’ve figured out what it is..for real this time! Hurray! Hugs this holiday! : )

  • Yay! I’m very happy for you–twisted and perverse as that sounds. God is good.

    Nate’s Mom

  • I’m so glad I stumbled onto this site. I’ve had similar problems lately (actually for a while) and now I’ve been having odd bouts of nausea. Thank you so much for sharing. This is certainly something to ask my doctor about — and I’ll be praying for your speedy recovery.

  • I am so glad that you have an answer and know what you are fighting! Hang in there and kick Lyme butt! We will keep you in prayer for a quick recovery!

  • So happy that you FINALLY have some answers!

    Hope your Thanksgiving was good.

    Hugs,
    Kat

  • So glad that you finally have an answer! I’m sorry the road ahead won’t be an easy one, but OH, THAT IT’S CURABLE!

    Will continue praying for you.

  • I am so happy that you have an answer! AND that it can be CURED! We will keep praying, since the road will be long, but we do enjoy that you bring us along. Sending hugs and holiday greetings!

  • So so so glad you have an answer! (And vindication!) I hope you had a GREAT Thanksgiving, it’s nice to know you could eat what you wanted to even if you don’t. 🙂 May God give you and the doctors wisdom in treating everything, and may He bring healing and ease throughout the next year.

  • Oh, DeeDee, I am so glad to hear that you have an answer and a promising course of action now!!! What great news to hear. I’ll be praying for you still.

  • Jeez Louise, I don’t read your blog for about a year and this is what happens. I’m not sure why I all of a sudden decided to read what’s going on in your life, but something must have pulled me in. I’ve had a long bout of pouting and feeling really sorry for myself and here you are with a weird disease and as upbeat and coffee-crazy as usual. Good luck with all the treatment. I know you’ll get through it with humor and positivity. You’re my hero.

  • Ok, so I see in reading the comments again (which I love) that my comment magically disappeared.

    User error, I am sure.

    Sigh.

    So to recap 🙂

    After homeschooling is over for December, and you have time to hopefully get over some of the misables you’re experiencing, maybe we can get on the phone and chat?

    So many things to talk about, and hopefully by then I have the results of the blood work-up the new Dr. here has ordered. I like him, and think we can trust him.

    Although his opinion that this is not RA, and could e one of three other things is abit un-nerving. One of them could mean I am ineligible for transplant.

    No idea why- or if true. Just something one of the dialysis nurses said casually in conversation.

    Like, thanks, missy. Anything else you want to casually tell me? Sigh. People need to learn to filter themselves, rather than sounding all know-it-all.

    Just my opinion.

    I am thrilled for you and FD about getting answers; he has been your tireless advocate in this and that makes me happy.

    You have a path, and a light at the end of the tunnel. Even if you get there dragging your cane behind you 🙂

    Love you. Talk soon.

  • Well done!!
    Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have obtained our introduction by faith into this grace IN WHICH WE STAND; and we exult in hope of the glory of God. AND NOT ONLY THIS, BUT WE ALSO EXULT IN OUR TRIBULATIONS, KNOWING THAT TRIBULATION BRINGS ABOUT PERSEVERANCE; AND PERSEVERANCE, PROVEN CHARACTER; AND PROVEN CHARACTER, HOPE; AND HOPE DOES NOT DISAPPOINT, BECAUSE THE LOVE OF GOD HAS BEEN POURED OUT WITHIN OUR HEARTS THROUGH THE HOLY SPIRIT WHO WAS GIVEN TO US.

    I’m happy dancing for you, D2!!!!!

  • I am so happy for you, I’m crying!!! I have prayed for you!