personal journey with lyme disease

VALIDATION December 15, 2011

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 1:40 pm

OK, so today I am 49 and by now I expected to have run a few marathons, still be working and able to go where I want to when I want to – but we know that hasn’t happened because of Late Stage Lyme.

I named this post VALIDATION because anyone who has been chronically ill and constantly ignored by the medical community at large is aware of how important it is to have someone say, “Hey, you’re not crazy, you are truly sick and have been for a long time”.  That happened to me in February 2008 when I saw a covering internist when I thought I had a blood clot in my calf.  I showed up at his office in leg braces, with a walker and wearing sunglasses.  He asked what was wrong with me and I told him that apparently I was crazy as that is what all the specialists could come up with after multiple tests.  He told me I wasn’t crazy and that he believed he knew exactly what I had – Lyme disease.  I had the necessary blood work done, went and had the blood clot ruled out and went home.  It wasn’t long before I got a call that I indeed had Lyme, but the internist wanted me to see a LLMD (Lyme Literate Medical Doctor) in Connecticut for treatment.  That was validation #1.

My husband, Dave, and I wait over two months to get an appointment with the LLMD.  We then drive 3 1/2 hours to see him.  He spends almost two hours with us going over notes, labs, examining me and said that just from a clinical stand point I was one of the sickest patients he had seen in his 13 years of practice.  Not good news, but validation #2.  Each trip to see him cost $400 out-of-pocket as insurance doesn’t cover visits.  We also had to stay at a motel each time as 3 1/2 hours in the car caused me so much pain that I could barely get out of the car.  More money.  We ate cheap.  We saw him every 8 – 10 weeks over three years.  Then there were all the medications and lab tests which left us with co-pays and some tests not covered.  It is very difficult to treat a disease that is denied by the medical community.

Now I am jumping ahead to yesterday. (My LLMD has been on medical leave since April and I have not talked to him since June, so I was seeing my internist’s partner who has a biochemistry disease and felt comfortable seeing me while I waited to see a Lyme literate neurologist in Massachusetts.)  I started seeing her in July and had to have as many old records and tests and medications available for her to review that I was overwhelmed.  Then came retesting – another Brain MRI to compare to one in 2008, and EMG and nerve conduction test and a neuro-cognitive test done with just me and a computer in a room, plus another 14 tubes of blood.

OK – I’m almost at yesterday.  It was my follow-up to go over all the results.  It looked like it would be a waste of a visit as I had called to make sure they had received all my old records and the office finally got back to me the day before to say they had not received them.  So at 3 pm I am frantically trying to get certain items faxed in time.  To say I was beside myself would be an understatement.  I was tired of disappointment – I almost canceled.

Yesterday we headed out the door at 8 am ready to at least get the test results this doctor had done. We arrived to find out that the faxes had arrived and I felt a sense of relief as she would be able to compare prior results.  Now bear in mind that before I saw this doctor, I had seen neurologists at Tufts and Lahey Clinic for 3 years.  Here come more VALIDATIONS that I’m not even going to number.  My Lyme blood work showed SIX positive bands for lyme – the neurologist dismissed it as did his infectious disease doctor.  My Brain MRI from 2008 showed lesions, but were dismissed; my recent MRI showed that the lesions had not grown in number – meds are doing their job.  My spinal tap showed a protein enzyme that Lahey Clinic ignored and they also ignored me when I told them I actually felt better after a spinal tap (how many people say that).  It turns out that I have swelling of the roots of my nerves at the base of my neck – a type of encephalopathy and that is why the removal of fluid felt better.  Of course, they dismissed this, too.  My EMGs and nerve conduction tests showed left-sided weakness, but Lahey did not think much of it.  My neuro-cognitive testing showed significant problems in the cortical part of the brain and diminished cognitive abilities – SHOCK AND AWE!  Just spend a day with me and you will be entertained.  There were other positive parts to the visit and we ended with me agreeing to go on high-dose Doxycycline for three months along with the Mepron, Biaxin, Plaquenil and Low-Dose Naltrexone that I am already on.  I need to get vitamin B-12 shots, get my vitamin D level past a dangerously low-level even though I try to remember to take high doses, and go for IV’s of other vitamins and Glutathione (a wonderful healing supplement that reduces stress in your body).  The last things on the list are the hardest to do as I don’t drive and there are only so many people available to help out and I am tired of asking.

To think that this all started because of a misdiagnosis over 18 years ago is appalling – that was my first bout of Lyme induced arthritis.  To look back and think of the indicators that I ignored because I figured I was a busy Mom of 3, working, taking care of relatives, doing all the wife things and was just tired and sore because of life.  I’m angry that I have basically lost my 40’s to this disease, to know that I’ll never be 100% and to know that I will relapse because of the severity of my illness – you just never know when that will happen or how long it will last.  I’ve missed being a wife and the type of mother I always was: baking, sewing, driving kids around – I think I deserve it back and that is what keeps me getting out of bed every day, taking my antibiotics and going to physical therapy.  That and the support of my family and friends.  Happy Birthday to me!


3 Responses to “VALIDATION”

  1. Rose Fox Johnson Says:

    Awe Sweety. I know it is frustrating, not having that validity. But doesn’t it feel good when you finally get it? It is almost like wanting to say. See, i told you. I am not crazy. Validity is a great birthday gift. Now get out in that rain and dance for joy. Happy Birthday! Did you swat your therapist? I am sure you had a smile on your face when they turned around.


  2. Wow, cuz, just….wow. I knew you weren’t crazy – i validate you now and did then too. But honestly, it wasn’t til i read this blog that I really got the big picture on just how sucky this diease is.There are things I’m learning that I didn’t know and am amazed that you keep fighting the fight, but you have to because you may not have been the mother/wife/whatever you wanted but speaking for me, I need you and learn from you and love you and have to have you here no matter what. There are things I’m learning that I didn’t know and am amazed at your courage. Please keep blogging, raising awareness and guess what, i’m going to make everyone i know aware of this lyme disease too. love you and happy birthday too – you are AWESOME!!!!!!


  3. Kathryn Thorne Says:

    Thanks sooo much for sharing friend in Lyme!! I’m going to post this on MY wall for further Lyme Awareness!! Happy 49th Kiddo! I was dx’d at age 54 and have probably had it since I was a kid. That’s a lot of years w/health challenges all misdiagnosed! We Lymesters stick together because WE ARE SURVIVORS!! May God grant you a VERY Merry Christmas and an abundance of HEALING BLESSINGS in 2012!! Hugs!


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