Back in the driver's seat

Today I had a realization.....a good one!  I finally feel like I am back in control of my life, back in the driver's seat!  Lyme has moved over.  It's not sitting in the passenger seat, nor the back seat.  It's in the trunk!

Yes, it's still with me, but I only notice it once in a while.....like that jug of windshield washer fluid in the trunk that clunks now and then when you take a corner.  But I am driving the car with my hands firmly on that wheel.  And it feels so good to no longer be ruled by the borrelia burgdorferi.

Returning to my teaching job this September has been great, even therapeutic.  I'm busy, my mind is active, and I'm so happy to be teaching my lovely students.  I love thinking about my lesson plans, my units, and YES, even the marking.  I'm honestly so glad and grateful to be able to keep up with the demands of my job.

Exercise is becoming another good routine that I'm putting into place, and that I'm happy to be able to do.  (Wow, I can hardly believe I'm saying this.)  A lot of flab built up since I got sick in 2011!  Laying on the couch, unable to even walk around the block, and feeding yourself comfort foods will do that, right?  It's time for me to get my body back in shape, build up my stamina, and tone those muscles.   

Finally, I feel so good to be getting my eating under control, not just for weight loss, but for good health and a healthy immune system.  For over a week now, I've been counting the "points" of everything going into my mouth (à la Weight Watchers).  I've set a weight loss goal for next July, so we'll see how that goes.  So far so good!

OK, so Lyme may always be with me, but it isn't (and shouldn't be) the focal point of my life anymore.  It is time to move on from that horror show.  It may pop by for a little unexpected visit now and then, causing me some physical symptoms, but I won't be inviting it in to wreak havoc on my emotions.  I have better and more meaningful things to do with my time.

   Forgetting what lies behind

and reaching forward to what lies ahead,

I press on toward the goal for the prize

of the upward call of God in Christ Jesus.

Philippians 3:13, 14

A superb book

I have finally finished Cure Unknown - Inside the Lyme Epidemic by Pamela Weintraub.  I've been working on it for at least a year!  There is a lot to digest with this book, and Weintraub has left no stone unturned in this study of the history and politics surrounding Lyme. 

Weintraub, her husband, and their 3 children all contracted Lyme disease, and she tells their story in detail.....from onset of illness, to misdiagnosis, to diagnosis, to treatment.  I'm sure many of you can relate!  (Me, too.)

 

 

Weintraub offers many excellent insights into the Lyme predicament.  One of her statements struck me as I read today:

 

"When it comes to science, questions on methodology are crucial.  Science can be flawed, it can be tricky, Jonas Salk taught me, but science is all we have.  If we are ever to unravel the mysteries of Lyme disease and find a cure, it is science - pure and unadulterated - that will lead us home.  We need science, but different science.  We must travel the road not taken.  Sometimes you just need to start again."  (p. 348)

 

This got me thinking about all of the effort that is going into this grassroots Lyme movement, led mainly by the victims and their families.  These efforts would include support groups, community viewings of Under Our Skin, interviews on local television and radio, letters to the editor, blogs, websites, information booths, Lyme walks, green bracelets and t-shirts, books, petitions, and seminars.  (Wow!)  But what, I ask, are these things accomplishing, apart from informing the public about the dangers of ticks and providing information to those who are sick?  For ALL of this effort, have we truly advanced our cause?

 

Well, perhaps there has been some improvement.  LLMDs are no longer persecuted in many U.S states now due to the passage of laws protecting them.  But there remains the issue of the CDC and the IDSA who have dug in their heels and refused to acknowledge that there is another useful standard of treatment.  And this is despite the evidence of so MANY clinical cases.....myself being one of them. 

 

So, what will it take?  What will change the system?  As Weintraub stated, we are going to need science to prove us right before there will be any sort of real change in the way Lyme is diagnosed and treated.  And so, we must do what we can to support this research and to get it published.  There is research happening as we speak, but we have yet to see a lot of fruit from their labour, i.e., true changes in the "system". 

 

And yet, though this post sounds a bit pessimistic, I truly do believe that one day things will change.  It will just take time.....lots of time.....but unfortunately many people just don't have a lot of time to wait.





On the home stretch.....again

Summer is coming to an end, and in 9 days I will be happily back in the classroom meeting my new students.  I love summer holidays, but I also love getting back into the routines of the school year.  It has been a lovely summer for the most part with family get-a-ways to Ohio and Kentucky, a visit to a cottage on Lake Huron, swimming lessons, church Bible camp, pool parties, sleepovers, dinners with friends, and of course, school supply shopping.  Whew!  I am so grateful that I've had a relatively healthy summer, not without a few health challenges, but all-in-all it was pretty good. 

Lake Huron afternoon

  

Tranquility

Lest I forget.....there was also the obligatory overnight trip to see my LLMD.  The in-person visits there are getting farther apart, as my doctor is willing to have phone consults every other time, since I've been doing so well.

So here is the progress report.  In early July, I switched to a new antibiotic.  I had been on Zithromax for about a year, but I was hoping that I might start something new to see if I could get past the plateau.  I wanted an antibiotic that was better at passing through the blood-brain barrier, so my LLMD put me on minocycline.  I really wanted to finish up my treatment with a bang!  My symptoms have been very controlled.....sometimes even non-existant.....but this antibiotic has made me SO tired.  Regardless of how much sleep I've had at night, I've been dragging through my days, unmotivated to exercise, and sometimes needing to nap.  This is very unusual for me.  When I spoke to the pharmacist, he confirmed that minocycline can be sedating.  On the upside, nighttime sleep has been pretty good, and I've begun to reduce my dosage of Imovane (sleep medication).  Hopefully, I'll be able to fully wean off of it.

These are my current medications - the minocycline, Nystatin (for yeast control), and the herbals Banderol and Samento.  I've been taking Banderol and Samento since March, and have slowly worked up to 30 drops of each, twice daily.  It's an expensive regimen, but I plan to continue using them even after I finish taking antibiotics, as a preventative measure.  I've done well on them, with no noticeable side-effects.  They are good for biofilms and they target all 3 forms of the Lyme germ.  You don't need a prescription for them.  If you would like more information, go to Treat Lyme and Associated Diseases.  You can read about how Dr. Marty Ross, LLMD, uses them in his practice, and you can purchase them from his website.

It looks like I'm on the home stretch, as far as the antibiotics go.  If everything continues to go well, health-wise, I think my LLMD will give me the go-ahead to stop the minocycline at the end of September, once the stress of starting the school year has passed.  Then, it will be a waiting game to see if my symptoms stay away or return.  When I went off my medications last fall, I was fine for 7 weeks, and then the symptoms started to creep back.  This time, I will have the advantage of the Banderol and Samento to keep things in check.....hopefully. 

This little bottle is the newest addition to my supplements.  It is iodine.  My LLMD has a particular interest in the thyroid, and he has learned from conferences that he has attended, that the majority of people are iodine deficient.  He prescribed this tincture for me which I had to purchase from a compounding pharmacy.  I'm starting slowly and will be working up to the prescribed 4 drops per day.  I wonder what difference I will feel over time.

Finally, it looks as though I will never be rid of my bag of supplements.  I was hoping that my LLMD would say, "You are pretty healthy now, so feel free to ditch all of those pills!"  No such luck.  He took a look at my list and explained how each vitamin/supplement is a benefit to me.  So, every meal's appetizer will continue to be a handful of pills, likely for the rest of my life.  Sigh!

Well, that's about all of the news.  I'll let you know how things go when I'm off the meds. 

My thoughts and prayers are with all Lymies everywhere.....those I know, and those I don't.  May you all find the help you need and find the path to restored health.  God bless!

This doctor knows the facts!

I came across this interview via Facebook.  This dermatologist, Dr. Day, has her facts straight about Lyme disease!  The interview was apparently aired on CBS, though I'm not sure if it was nationally or just locally somewhere.  Regardless, at least a number of people were exposed to the truth about Lyme.  When you watch, take note of how small those ticks can be.  Protect yourself!

Click here to see the interview on YouTube.