Lyme Treatment – day 13

I woke up this morning feeling like I had been out drinking all night.  Headache, eye-ache, all my joints feel stiff, nauseous, ugh.  Yesterday the silver dose was raised to 600ml and it is the same for today.  I was given a trial of Res Cue by Body Bio.  It has some electrolytes to aid in clearing the toxins being released in my body from the dead spirochetes.  Lovely.  But the magnesium in it has given me the runs so they suggested a simple remedy of Alka Seltzer Gold, which has similar ingredients minus the magnesium.  Yay.  So we’ll give that a shot.  I’m almost half-way done with this protocol.  Yay.  So enthusiastic, right?  Don’t get me wrong, I am totally stoked to finally be in the trenches fighting this thing.  It’s just a physically uncomfortable place to be, albeit incredibly hopeful!  Yesterday and today are slated for 5 ½ hours long.  Yesterday took all of that time.  As I sit here I will go back in time a bit and try to start from the beginning.

Last year, around the February time frame, we took my female Akita, Sachi, to be bred in Arkansas.  On the way home, we stopped at my birth-mom’s house in Jay, Oklahoma for a short visit.  While there, I noticed a circular rash on my leg and mentioned it to my husband.  I thought it looked like one of those tick bite rashes but there was no tick attached.  Isn’t there supposed to be a tick hanging on??   Well, no there isn’t.  But I didn’t know that and so I wrote it off as a spider or mosquito bite and went on my way.  As the months passed I began to experience progressively stronger and stronger joint pain and body aches.  My family doctor tested me for arthritis where I have a positive rheumatoid factor but negative for CCP.  Also at that time I was negative for ANA which is a Lupus indicator.  So I took OTC pain meds and pushed through.

I was increasingly uncomfortable.  By December, I felt like running down the street screaming because I had been in constant level 7 pain for months on end.  My family doctor, Monique Maly, is an amazing integrative MD, who takes great care of me and my family.  She routinely spends a hour with me at each appointment – amazing right?  When I told her how bad I felt, she ran every test she could think of to try to get to the bottom of the issue.  I had elevated antibodies for CMV, which is weird since I had already had it in the past.  Why was my body not tamping it down now?  This time the ANA also came back positive, indicating the possibility of Lupus.  Well that was not good news.  But the biggest find in the battery of tests was that I showed positive for one band of Lyme disease antibody on an ELISA Lyme panel.  Now please understand that, because my doctor is a Lyme Literate MD (LLMD), she knew this was a very good sign that I had Lyme disease EVEN THOUGH the CDC completely disagrees.  The fact is that the ELISA tests are very unreliable.  If interested, please see Lymedisease.org‘s page about it.  Dr Maly consulted with a colleague and determined that I most likely had Lyme because of the single band coming up positive in addition to the false positive rheumatoid factor, ANA and elevated CMV antibodies in my blood.  Lyme disease causes all these things as well as the joint pain.  Dr Maly gave me a choice to see a doctor in Boulder, CO or go up to Ft Collins, CO to Tri Life Health.  She didn’t hesitate to tell me that if she had Lyme disease she would go up to Ft Collins.  I had two more recommendations to go there from completely different places and decided that it was where I was supposed to go.  Yay, God, for confirmation!

tlh sign

I called Tri Life Health and learned that it would be weeks or months to get an initial appointment.  Sigh.  So close and yet so far to get relief!  So I made the appointment with Dr Becky Kuhn and made arrangements to have the Western Blot test done through the lab iGenx.  If your doctor does not select this lab for your Western Blot – make them!  It is renowned for being the most accurate lab for tick borne disease.  It takes a few weeks to get the results but worth the wait.  Happily, Dr Becky had an opening and was able to see me in just a few days after seeking an appointment.  A miracle!  This woman, bless her, spent 4 HOURS with me!  I brought my stack of lab results and my long record of surgeries and supplements.  She listened intently and said that she thought I had Lyme disease.  Then, upon receiving the results of the Western Blot, it was confirmed.  My Western Blot came back with several Lyme specific band antibodies identified as active.  **A super important point about this test is that some of the bands came back as Indeterminate (I).  Dr Becky speaks with the iGenx lab people almost every day and assured me that even though the level was not enough to be officially + positive, there is activity with Lyme specific antibodies (nothing else activates them) and thus Lyme was positive.  It is probably because my immune system just cannot mount a significant enough attack to get a bigger read.  Some kind of politics and big business money situation, that I don’t understand, is involved in what level of Lyme antibody makes it positive.  Add all my symptoms and history to the Western Blot and ELISA tests created a compelling argument that I have Lyme.

Its truly sad that it is so difficult to diagnose!  If you suspect you have Lyme, seek out a Lyme Literate MD (LLMD)!  Many people spend literally years and decades being treated for depression, fibromyalgia, RA, Lupus, etc when the basis for all their problems stem from Lyme disease.  As a final note on the subject, it is quite possible that I’ve had Lyme for a very long time and the bite last year just added to it.  Stay tuned for information on the co-infections that I also have…  The little bastards bring their friends!

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