personal journey with lyme disease

Time for some changes…… June 17, 2012

Filed under: Uncategorized — iammorethanlyme @ 3:40 pm
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I have come to some decisions about my Lyme treatment that I shared with my husband and he understands and says he will pay attention to anything he notices good or bad regarding said changes.

It took over four years to be correctly diagnosed (if you dismiss the original misdiagnosis 20 years ago), I’ve now taken almost every antibiotic, parasitic and fungal drug there is for over 4 years.  I am currently just taking Bicillin 1.2 million units by injection twice a week and started Alinia (anti-parasitic) last week and today took my first daily dose of a beta blocker to help with my tachycardia.  I am supposed to stay on the Bicillin and Alinia until July 30th and then stop meds for two months so that when I see my neuro-lyme doc in September, she can have me tested for Bartonella with a new test that has come out and as there are over a dozen types of Bartonella species, this is a welcome test.  Along the way I also have to straighten out my issue with LabCorp bills and why my insurance and/or Medicare didn’t pay them so I can have my CD-57 and probably c3a and c4a complements repeated to see where I am at.

So, where am I going with this??  I’m done being a walking antibiotic.  I’m done trying to gauge if this antibiotic combination is working better than another one.  I am done with rashes, yeast, and shots in my butt.  I am done with feeling like I have to do whatever a doctor tells me.  I am so grateful that an internist I’d never met before diagnosed me after years of horrible tests.  I am grateful that he sent me to the most wonderful Lyme Doctor I could ask for, but he has been on medical leave for over a year now and I still have not chosen or gotten a response to the few doctors I have left messages with to be a new patient.  Now I have a brilliant neuro-lyme doctor that I never feel like I answer correctly and another doctor at my primary care’s office who is “filling in” for the Lyme part as he has a degree in biochemistry to boot.  With that being said though, I feel I have read a lot, talked a lot to friends with Lyme and think I want to see what I can do for myself the next few months.

First, today will be my last Bicillin injection for now because that was all I was going to do and it cost $672.00 for the co-pay.  I cannot say I feel any better.  I still am waking at 4 or 5 in the morning, then napping in the late morning and then I look like crap by dinner time.  I am on other medications for nerve pain, depression, sleep and won’t stop those and I will stay on Alinia because I can easily believe I have parasites and co-infections.

Second, I will make some changes to the detox diet I have been on for four years now – amylose-free or not, I need to adjust it.  I heard Dr. Ritchie Shoemaker was actually coming out with a new diet and will have to see if he has published it or not.

Third, I will start going back to the gym even if it is to ride a bike.  I like the gym and I need the social aspect.  I hope that maybe in a few weeks I can do physical therapy.  I will look into aqua therapy and also another newly built gym that has a chlorine-free pool, which is what I need.  I would also just love to be in the water without being told what to do.  I have done aqua therapy before (I hadn’t been diagnosed) and I know what I would need to do.  Am I being stubborn about this – absolutely!  Why?  Fear, plain and simple.  If I go to the place that has aqua therapy I am afraid I am going to end up with leg braces again once they watch my gait and do strength testing.  I am already mad that I haven’t been to the gym since March due to a relapse.  I had 2 good months.  Yep, maybe it’s more than others have had, but for me it was a tease and I don’t like being teased.

I am going to start on Propax Gold with NT replacement, which is an all natural powder that is responsible for helping in the replacement of healthy cells as Lymies have a hard time clearing their bodies of dead, unhealthy cells.  This has been studied for 5 years with great results by a Nobel Prize nominee that I have actually chatted with on Facebook.  I want to cleanse my body, but I’m not ready for full on detoxing, juicing, herbs and have no interest in coffee enemas (ever)!  We are all trying to figure out what works best for us and I am going to start very simply by cleaning the slate and beginning again.  Of course, I hope and pray I do not fall on my face, but I spend so many days thinking I couldn’t feel any worse anyway, I am going into my decision optimistically.  I will be keeping a chart (hopefully daily) of any changes – fevers, rashes, fatigue or less fatigue, less rashes and no fevers.  I will keep you posted.  Kath

p.s. any of my girls that read this, I know you will let me know of any changes as you always do – I am so lucky to have you for my daughters. xoxoxo


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