When life gives you Lyme…

…throw in a little salt and toast with a Margarita.

I’ve encountered a new twist in my medical journey.  I had an appointment with my new internist and naturopathic physician on Monday.  Their office is very thorough, and take a great deal of time getting information and answering questions.  I did not feel at all like I was in an assembly line, as is often the case with normal physicians.

I will cut to the chase and tell you that after examining both me, and all of my medical records and tests from the last 8 months, Dr. K. has come to the conclusion that I do not have Rheumatoid Arthritis.  Instead, he strongly believes that I have a widespread infection, most likely Lyme Disease.

Lyme Disease is very tricky to diagnose, since it masquerades as a number of other maladies, and it is often missed.  Even by the big guys.  Even the guys at Mayo.

I’ve had a number of blood tests to determine if I have the Rheumatoid factor in my system and they’ve all come back negative.  You can still have RA, even though the tests come back negative.  But, there is one particular test that Dr. K. feels is definitive regarding RA, and I was negative on that one as well.  He explained the difference in the tests, but I was too busy weeping on the carpet.

I knew, in my heart, that I did not have RA.  But no one was listening to me.

The more I’m learning about Lyme Disease and the symptoms, the more I’m convinced that I have it in spades.  Many blood tests do not detect Lyme Disease, but the IGeneX test is the only one that I’m aware of that can pinpoint and determine this disease.  The plan was to draw my blood in the office, and send it off to California to see if I do have Lyme Disease.

My veins, however, had other plans.  After 2 nurses tried (twice each) to stick me in various parts of my arms and hands, even the doctor got in on the action and could not get any blood out of me.  My very best vein has evidently developed scar tissue from all the sticking of late, and collapsed from all the stress.

I left with bandages all up and down my arms.  Since I have other blood work that has to be done through a lab, they sent me home with the entire kit, so that I can have it done all at once.

There are some other issues with my immune system that my doctor is suspect of.  I may have candida plus some other fun problems, that are inhibiting my body’s ability to fight off infection.

Today was test day.  I had to start the day with a stool sample.  Followed by a saliva test, in which I have to fill 4 vials with saliva throughout the day.

Have I ever mentioned that I have an issue with body fluids?  Especially my own.

Let me just say that my gag reflexes are fully functional.

Then it was time to go to the lab for the drawing of SIX vials of blood.  The very sweet and patient nurse had to stick me no fewer than 5 times, to no avail.  She suggested that I wait a week, and let my very best vein heal, and then try again.

I begged her to try one more time.  Because some of these tests take 3 weeks, and I dearly wanted to get the results back before my next doctors appointment  Thanksgiving week.

She said that she could try the vein in my wrist, but it would be painful.

At this point, pain is relative.  I asked her to please try.  And she did.  And it worked.  She was able to get 6 vials out, one tiny trickle at a time.

I look like a drug addict, with track marks all over my arms.

But all of the testing is complete, and will be shipped off tomorrow.  And then I wait.

In the meanwhile, I’m going to a new Physical Therapist for my knee.  We’re making progress.  And by we, I mean that he’s doing all the work, while I fill the cuss jar he installed in my honor.

My knee cap, and one surgical port are bogged down into the scar tissue from THE TWO UNNECESSARY SURGERIES AND WEEK OF IMMOBILITY FOLLOWING THE SECOND SURGERY, AT THE SURGEON’S REQUEST.

This is making my knee cap lean to one side, and is responsible for a good deal of the pain that I’m in, on top of the inflammation.  So my P.T. has to manually loosen my knee cap.  And then he uses these electrode type thingies (high faluten medical jargon) attached to my thigh to retrain my muscle, and more electrode type thingies on my actual knee.

But I prefer to call it what it is.  Death by electrocution.

But you know what?  It’s working.  The inflammation is lessening, and I’m able to straighten my leg out now, and bend it to 112 degrees.  Huge progress.

I’m still on my rather strict diet, because that is helping my autoimmune system to repair itself.  And as a bonus, I’ve now lost 13 pounds in the last 6 weeks.  Eleven more pounds, and I’ll be at my goal weight.

I’m encouraged by this change of events.  I feel like I have an awesome team of doctors on my side.  At long last.  Between my primary care doctor and Dr. K., my bases are covered.

My head is still spinning as I’m now researching Lyme Disease.  It’s not an easy disease to treat, but it is treatable.  The finish line is somewhat within sight.

I would love to hear from any of you all that have dealt with Lyme Disease, either directly or indirectly.  I won’t know for a few weeks if this is what I have, but I have an awfully strong suspicion it is.

Thank you for joining me on this roller coaster ride toward healing!  I really feel like real answers are within my grasp.  And I so appreciate your continued prayers and encouragement. I cannot say that enough.

26 Responses to When life gives you Lyme…

  • Holy crapp, girl! (and I mean that in the most religious sense, of course.)
    I know you will be so thankful when you have a definitive diagnosis. I’m glad you are regaining mobility, but it sounds like quite a painful procedure.
    I don’t have any direct or indirect experience with lyme disease, but I’m praying for you.

  • I’m with you on the electrode things. That was my least favorite part of physical therapy, including the day the therapist decided to bend the knee a bit to loosen the scar tissue. (As my time at pt was coming to an end, a young girl came in with an elbow/arm that had locked up. After much discussion and trying other things, they hooked her up to electrodes. I felt so bad for her. I think tears were coming out of my eyes for her.)

    Good luck with the lyme diagnosis. Its a tricky disease. I had a friend who found an excellant doctor to treat her chronic lyme and now she is symptom-free and back to her pre-lyme days.

  • DeeDee, I’m sitting here, just amazed…so glad…good for you for looking at alternatives. Praise God that healing is in sight.

  • And, I hope we’re adding an attorney to the team regarding the unnecessary surgeries.

  • What a journey you have been on! Such a testimoney that you have to be proactive when it comes to your health and rely on God our ultimate healer. I will keep you in my prayers that a clear answer comes with complete healing.

    Peace and Comfort to You!

    Denise

  • My son was treated for Lyme disease this spring. It was in the early stage and he is doing well. I know they have come a long way in treating it. Hopeful you’re on the journey to healing and back to your old self soon. Does this mean you can have Oreos again?

  • I know of a family right in the shadow of Mayo, heck, two of them WORK at Mayo who went undiagnosed for YEARS with Lyme. It was supposed to be anything from celiac to chrone’s and on and on and on. I’m sure RA was in the misdiagnosis as well.

  • Wow! What a twist! I admire you for always keeping your sense of humor through all that you have been through lately. I know nothing about lyme disease however maybe you could ask your homeopathic doc about the GAPS Diet “gut and psychology syndrome” it is designed to heal the system and help get rid of autoimmune diseases. That is about all I can suggest since I don’t know anything of lyme disease. But hang in there! 🙂

  • Wow! Looking forward to the results!

  • What a journey! I sure hope this is the beginning of the end for you if it is I think you should celebrate with Oreos and a large Starbucks-anything-you-want drink! Keep smiling and hold on to your blood – they may want more….

  • Hugs. Just many hugs and prayers. You are doing great pushing for answers and enduring the PT and diet changes and all!!

  • All that test-talk made me think of something I heard T.D. Jakes say on TV a couple of Sundays ago: “You can’t have a testimony without a test!” You certainly have had the tests, of ALL kinds, and I’m looking forward to the rest of the testimony on the other side when it’s all figured out, treated, and cured! God bless you and I’ll keep praying.

  • You have been through the wringer! Oh my!! A friend’s husband contracted Lyme a million or so years ago and she started a website for those suffering with Lyme, their families and homeschooling.

    Because she is that kind a woman.

    Here is the link. http://hopeismyanchor.com

    Still praying!

  • Way to be your own advocate. It’s hard, especially when no one listens.

  • I think we all need a dr who will take the time to be so thorough!!! I’m so thankful God has lead you to keep looking into this and the Holy Spirit leads us in the right direction!

    I think my dad had Lyme disease but it must’ve been very minor and caught and treated quickly b/c I don’t remember it being a big deal. He just had the “telltale” bullseye mark.

  • Yay Deedee!! I am just so happy that your latest diagnosis is treatable and not long term! I hope you will now have a speedy recovery!! A few years ago, Lysa Terkeurst asked for prayers for her mom on her blog. It turned out that Lysa’s mom was diagnosed with Lyme disease also. You might try doing a search on Lysa’s blog for her posts about that and maybe even email Lysa. Good luck!!!

  • My cousin is on this same Lyme Disease journey. I’m going to tell her to email you and maybe she can give you some info/tips/etc. but it is a long journey (but better than RA!)

  • Bless your heart!! I mean I’m glad you are getting some answers and total KUDOS to you on the weight loss…but geez louise, you have really been through the ringer, and back a time or two! 🙂

  • A friend of mine asked me to write you. I have Lyme Disease. I have had it for 18 months. I have a doctor that has successfully treated many patients with Lyme disease, and has given me that treatment. I have had no symptoms since going on the drugs and supplements she has prescribed. I think what helped me the most was getting the answers I needed from her. My advice is find a Lyme doctor in your area. There was not one where I live so I flew to see my doctor. God bless you and I will be praying for you.

  • God Bless You, honey, and I hope you find out soon that you have something treatable and reversible. I have a first cousin who is in his 70’s who had lyme a few years ago, and it was a booger to get rid of but he’s doing fine now. Course, he didn’t have all your mis-diagnoses and surgeries, just a lot of hospitalization and experiments on the antibiotics that would kill it, but the bottom line is – fine now. Best of luck to you!

  • JEEZ, woman! Couldn’t you just be pregnant?? AHH!

    Well, this makes more sense to me than RA (not that I am in any way shape or form any kind of medical professional, however I do believe that ticks are the spawn of satan, so there you go…). I am SO glad you have a team of docs who actually listen and try to HELP you instead of just “cut and charge” – UGH! That is HUGE! I will keep praying for you that this new direction is a path to a cure.

    And when you’re better, can you have a margarita???

    • Shannon,

      I believe I can. In the following order, I want: a cup of coffee, chocolate, choco-vine, and a Margarita. Gives me something to live for. 🙂

      Thank you SO MUCH for your prayers. Prayer is what sustains me. I’m serious.

  • Hi,

    I started seeing Dr. K and he is now treating me for Lyme. I think he is wonderful. Why can’t every doctor be like that?

    I thought I was the only one who bawled like a baby…LOL. I’m glad to know that others cry, too. When he told me what was wrong wth me, after 12 other doctors got it 100% wrong, I just burst into tears ( happiness, anger at the other docs, fear, gratitude, you name it and I felt it ).

    I’m not sure how long I can afford him, but I am very so glad he’s on this and ready to help me fight.

    Good luck with your treatment. 🙂

  • Hey Dee,
    Who-da-thunk we’d ever be saying “Praise God for a possible diagnosis of Lyme Disease?” But I’m saying it now! Will continue to keep you in my prayers. Your sense of humor blesses me, especially in light of all you are going thru. Can’t wait to see how God is going to use all this in your life. ‘Cause He WILL! And it will be glorious. God bless.

  • WOW, what an amazing story. I hope you find the answers you are looking for as I am in a similar situation right now with my husband. He is being treated for RA right now and I think he may have lyme. His father had RA, so when he began experiencing stiffness the rheumatologist was our first stop. None of the medications were working, so I began looking up other possible causes when I ran across lyme. After looking at some of the symptoms I recalled that he had the bullseye rash on his arm about 6 months before the symptoms started. We brought this up to the rheumatologist and he pretty much dismissed it based on the family history. His ANA is negative and his RF is negative. Would you please tell me the other test that your doc did to rule out RA? Thanks for the help!!

  • Jessie,

    Oh my goodness. I feel your pain. Keep looking until you find a doctor that will listen!!! Generally, it’s a doctor that is more open to holistic approaches to healing, rather than simply writing prescriptions. Sadly. The Lyme test that you need is called IgenX.com. It is not cheap and has to be sent off to California, to a lab that specializes in looking for Lyme.

    The way that my doctor in Orlando finally ruled out RA was that he looked at one particular RA blood test that was also negative. He said that if you test negative on that test, you don’t have RA. And I wish I could remember which test it was, because I had A LOT of RA blood tests. Also, a good deal of my pain is in the soft tissue, as well as the joint. We won’t know for certain if it’s Lyme until the week of Thanksgiving. In the meantime, I’m basically on a diet of raw vegetables and greens. I most likely also have a stubborn case of Candida, and I’m trying to cleanse, to see if that will help ease up on the inflammation.

    Good luck to you. And you really do need to listen to your instincts, so it sounds like you’re on the right track. 🙂