Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Monday, August 27, 2012

Light at the End of the Tunnel


This is how I felt today as I finished up my appointment with my LLMD.  Here I am, nearing the end of this long, dark tunnel called Lyme, ready to emerge into the beautiful light of day!  The end of treatment is nearing.  It's so close I can see it! 

I've been feeling exceptionally well for the past month, with just minor, tolerable symptoms here and there.  The fatigue has definitely improved, and I've been able to go about my day without too much difficulty.  I'm headed back to work as a teacher in one week!  That's exciting!

Here are some questions I asked my LLMD at this appointment, and these are the answers he gave me.

1. What if all of my symptoms don't ever go away completely?  How will we determine the right time to end treatment?
Answer:  It's sometimes hard to tell if certain remaining symptoms are caused by the Lyme or by the medications themselves.  As long as I continue to improve, we want to continue to push the treatment.  But if improvement stops, and I'm feeling quite well, then perhaps it's time to try to go off of the medications and see how I do.

2. When do you think I'll be done treatment?
Answer:  He thinks I should probably be able to go off all medications around the new year.  He doesn't like to stop antibiotics for teachers at the start of the school year (due to the stress of the situation.....and we all know that Lyme does not react well to stress.)

3. Can we begin to space out the appointments a bit more?
Answer:  Yes, we are at a point where we can go a couple of months, and perhaps even phone consults as long as I'm feeling well day to day.  (Wow....was I glad to hear that!  It sure would be a great cost saving to have just a phone consult.  No 3-hour drive to and from, no hotel expense, no restaurant meals.  Sign me up!)

4. What do you think of the new blood test - the Borrelia culture by Advanced Labs?
Answer:  The test is not perfected yet, and is expensive at $600.  It's not worth it.  (Nor does he feel that the CD57 is worth it, in his clinical experience.  The CD57 numbers just don't always correlate to how a patient feels physically.  He prefers to go by symptoms, and how you're feeling to determine end of treatment.)

5. When I finish up the antibiotics, could I go on herbal anti-microbials to help keep me in remission, such as Banderol and Samento?
Answer:  Yes, those herbals help some people in the remission stage; they're not as good during the intensive treatment though.  They can be purchased online and aren't too expensive.

6. Will we attack the cyst form of Borrelia again with Flagyl or grapefruit seed extract?
Answer:  Since my liver enzymes were elevated on the Flagyl last time, we won't use that one again.  I can do grapefruit seed extract, but we'll leave that for a while, since it can make some patients feel ill (....and I'm going back to work, so the timing isn't right.)  With some patients, he never prescribes Flagyl at all, and they do just fine.  (It depends on the person and their symptoms.)

Wow......it goes to show that there is no real recipe for treating Lyme disease.  It's an art.  LLMDs evaluate your symptoms carefully, and choose the antibiotics that they feel will best address your particular situation.  Sometimes it's trial and error.

I'm grateful for my LLMD, for his experience and guidance.  I'm grateful that I'm being cared for by someone who has treated over  3 000 Lyme patients!

Thank you so much, Dr. L, for caring for your patients, for going out on a limb for us, and for continuing to learn through your practice and conferences, in order to provide the best care for us.

You truly saved my life.  May God bless you!

4 comments:

  1. I am SO glad that you are feeling so much better, and that you are returning to work soon! Praise the Lord!!

    It was my understanding that the CD57 was used to determine how active Lyme was in the body to prove to the insurance companies the need for treatment, and also to gauge how the immune system was responding to treatment to know if it was going to be able to keep the remaining Lyme and co in check once the antibiotics are stopped since we never completely get rid of all of the infection.

    Please keep us informed how your body handles work. Praying it is a smooth transition for you =)

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    1. Hi Krystal,
      Thanks for your kind note! I'm happy to be at this point....FINALLY! When I was really sick last year, I never knew if this day would come.

      Dr. Burrascano recommended the CD57 in his guidelines, but it was a fairly new test at the time, I think. Some doctors these days are questioning its use because they are finding that the numbers don't always correlate to how the patient is feeling. My CD57 was 20 when I had it done in March 2011, and by March 2012 it was 22 (even though I was feeling quite a bit better.) It hardly budged. I do wonder what it would be today, though, since I'm so much better than I was in March even. And I've also read that it doesn't go up gradually, but jumps up quickly once your immune system is working better. Here is a link to another LLMD who discusses the CD57: http://www.treatlyme.net/articles/2011/11/1/finished.html. Unfortunately, he says that he sees some patients relapse, even though they were symptom-free and had a good CD57. (That's scary.) Have you had a CD57 done at all, and have your numbers gone up?

      Thanks again for your well wishes and prayers! Blessings to you!

      Paula

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    2. Sorry it took so long for me to respond =) I did have a cd57 done a 1.5 years ago and it was 13. It is quite expensive, and the results definitely aren't the final say on how the body is ultimately going to respond to treatment, but I would like to have another one done in a year or so to see how well my immune system is recovering.

      Blessings =)

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  2. So so true!! I'm so thankful for my LLMD too!

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