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!

Update on my biofilm treatment

Hello to my fellow Lyme sufferers......uh, let me rephrase that......my fellow Lyme survivors!  Ya, that's much better.  (You know, the glass half-full thing, rather than half-empty.) 

I thought I'd bring you up to date on this latest phase of my treatment.  As you may remember, I relapsed in January after being off antibiotics for 7 weeks.  So here I am, back ON the antibiotics, but I've added some biofilm busters - the herbals Banderol and Samento.

I've been working my way up to the full dose of these.  It sure takes a long time when you start with 5 drops and only add 1 drop every 2 days until you finally get to 20.  I'm almost there.....today I did 19 drops of each (2 times).

So how has it been?

Well to be honest, I haven't felt this crummy in a long time!  I'm very tired on this regimen.  I seem to get a lot of headaches, and once in a while, that Lyme brain fog rolls in.  The other night, I had a hard time sleeping.  I woke up every two hours with a splitting headache.  When I tried to nap the following day, I got those brain vibrations/tremors as I was drifting off to sleep, and it kept waking me up.  Strange, I know.  But many of you will understand what I'm talking about.  So many Lyme patients talk about body vibrations.  It feels like you're sticking your finger in an electrical outlet!

So what does this all tell me?  Well, maybe I'm herxing.  Or maybe I have yeast overgrowth which is triggering cytokine production, causing symptoms similar to Lyme.  It's hard to say.  I've made an appointment with my naturopath so that I can tackle the yeast problem if that's what she thinks I have.

If I'm herxing, then that's great!  The dormant Lyme is coming out of hiding, and biofilms are being broken down, and more of the bacteria are being killed off.  And that's the whole point of being on the Banderol and Samento.  So I'm not going to complain.  I just hope that things settle down after doing a few months of this treatment.  I'm even considering staying on a preventative dose of Banderol and Samento when I'm done, just to police the remaining critters.

If there is anyone out there who may be reading this who has actually achieved remission, I'd love to hear from you!  How long have you been in remission?  What are you doing to build up your immune system?  Are you taking any special supplements?

Before I sign off, I'd like to refer you to a wonderful blog entry I read this week from the blog Infectiously Optimistic.  To find the goodness in chronic illness is such a blessing.  I thank the author for her uplifting perspective.

I never wanted to be a detective

One of the worst parts of Lyme is how it is all such trial and error, and there is so much "unknown" with this illness.  And it's unpredictable.  Even though I'm feeling pretty good on my meds these days, there are days when I'm "off", or when a weird symptom appears.  Last night, I got a bad case of diarrhea after dinner - 3 episodes over an hour or so. 

I tried to analyse the situation:

Is this from the Zithromax?  It can cause diarrhea, but usually I'm fine on it.
Or maybe it's a side-effect of the Banderol and Samento.  I've never taken them before now, so I have no idea what side-effects they will produce in me.
A herx!  Yes, it could just be a herx!  But I've never had diarrhea from a herx before.  Hmmm.
Maybe this is because I started eating well today, and my body is reacting to the lack of carbs and screaming out for sugar!
Or do you think it's yeast?  Yikes.  I really don't want to deal with candida right now.
Could this just be an intestinal virus?  (Hmmm....Not likely....I think I can tell the difference.)
Or worse yet......could this be c. difficile?  Ohhhhhh nooooooo!  You could get really, really sick with that.  Great!

And which is the correct answer?  I have no idea.

But I do know that I hate being my own detective.  What I really want and need is to have my local health care system taking care of me, answering my questions, and doing the detective work.

I guess all I can do is wait it out and see.  I don't think I'll even bother notifying my LLMD.  I know what he'll say anyway - stop all meds until it clears up.  So, that's what I'm going to do for now.

I'll let you know how it goes.

How is remission achieved?

I had an appointment with my LLMD two days ago and we made a little family trip out of it.  It's a 3 hour drive from our house in Canada to my doctor's office in the U.S., provided there is no delay at the border.  We left ample time to stop for lunch on the way at my favourite restaurant, Pizzeria Uno.  (Good bye carb-free diet.  The wild mushroom and cheddar pizza is hard to resist.)  After the appointment, we checked into our home away from home, The Hampton Inn and Suites, and had a disappointing evening and terrible sleep!  Neither was the fault of the hotel.  I had been looking forward to curling up and watching the World Figure Skating Championships but it could NOT be found on American TV!!!  Honestly!  There was basketball and hockey, but NO figure skating.  I was totally baffled by this.  Is figure skating not as popular in the U.S. as Canada?  As for the sleep, well...suffice it to say that hubby and I are not accustomed to squeezing into a queen sized bed!  And our kids are not accustomed to sharing a bed either.  Little sleep was had by all.  Outlet shopping cheered me up a bit the following day.  (Note to self:  Next time, leave hubby and the boys somewhere while you shop in peace.)

Onto more important things......the doctor's appointment. 

So here I am in mid-March feeling pretty good on my Zithromax, Banderol and Samento.  So far so good.  The symptoms that crept back in early January have abated.  I'm tapering off the sleep medication (again), and looking forward to some good months in the spring.

Which begs the question:  How do I get into remission and STAY in remission?

When Lyme disease strikes and you're really, really ill, all you can think about is how to feel better.  Hopefully, that is eventually achieved.  But when you're there, at the end of your treatment, the next step is to figure out how to remain in remission.  Some people get there, others do not.  It's quite a mystery for even the LLMDs.

Doctors say that if you had Lyme disease for more than 1 year prior to starting treatment, it is highly unlikely that the infection will ever be completely eradicated from your body.  Remission is the most you can hope for. 

My LLMD said that I was a borderline case, so it's hard to say.  I had symptoms for 5 months prior to treatment, but the bacteria was in my system for much longer than that.  How do I know?  Well, the symptoms came on in January of 2011 - not exactly tick biting season.  I had been hiking through brush at a provincial park the previous summer, and had been devoured by black flies several summers earlier up at a cottage.  The bacteria was clearly dormant in my body for a time before producing the symptoms in January.

So, can I ever eradicate the bacteria?  I don't know.  Neither does my LLMD.

The fact that I relapsed in January of 2013, after 18 months on antibiotics followed by 7 weeks off them, leads me to believe that the bacteria was not fully treated.

Dr. Marty Ross of Treat Lyme and Associated Diseases, whom I contacted to ask a question about relapse, said that I should deal with biofilms for the next 4 months, so that is the plan.  I'll continue the Zithromax, Banderol and Samento until the end of June, and then decide if I want to try going off everything cold turkey or if I want to take a preventative dose of Banderol and Samento every day.  I guess we'll see.   

My own LLMD (not Dr. Ross) said that he has patients who have been on antibiotics for 20 years!  He said that I may need to pulse the antibiotics periodically if symptoms come on.....perhaps for a couple of months at a time.  I asked him about the so-called "super bugs", which can be a concern for those on antibiotics, and he said that he's never seen that in his practice.

So, the future is unclear.  I hate that.  I'm a planner, and I just don't like not knowing how my health is going to hold up as I move into the future.

A fellow Canadian Lyme sufferer, Christa Vanderham (whose incredible story you can view here), posted this yesterday:

"Don't fret.
For this leads to wrong-doing...
Rather, wait on the Lord instead."
-Psalm 37

Thanks for the reminder, Christa.  I needed that.

Goodbye biofilms - I hope!

I'm starting on a new herbal regimen in addition to my antibiotics - Banderol and Samento.  I received them in the mail today....finally....after waiting 2 1/2 weeks for them.  I'm both happy AND nervous to embark on this treatment, which will last for 4 months. 

First off, here they are.  Ta da!  They look so lovely and innocent, don't they?  But I hear they pack quite a punch.

This herbal treatment is going to hopefully help me get rid of any Lyme germs that are preserving themselves under biofilms.  Biofilms are a slime coating that exist on some Lyme bacteria, and which antibiotics are unable to penetrate.  Lyme is stealthy.  It finds ways to hide and protect itself, only to come out of hiding at some later date and send the host (aka ME) into relapse.  Banderol and Samento break down biofilms, and are able to kill all three forms of the Borrelia bacteria - the spirochete, L form, and cyst form. 

The downside of Banderol and Samento is that people often report herxheimer reactions (also called die-off reactions).  As the bacteria die off, toxins are released too quickly for the body to dispose of, and symptoms can flare up or you can feel flu-like for a period of time.  I know what herxheimer reactions feel like.  My worst herx occurred 3 days after I started antibiotic treatment in 2011.  I felt awful for 6 days, and then it subsided.  They came regularly during my treatment for about a year, and then finally I was free of them.

Dr. Marty Ross, an LLMD who has a practice in Seattle, Washington, has provided a lot of very good information about Banderol and Samento, and has seen a lot of success with this treatment in his practice.  Check out his website, Treat Lyme and Associated Diseases, if you want to know more about this herbal regimen.

Wish me luck.  I'll let you know how it goes.

Update on the relapse

Here I go again.  Sigh......

Obviously I've had a lot on my mind this week, and my thoughts have been swirling around, trying to make sense of this stupid relapse, and trying to access all of the methods and techniques I used during the worst days of my illness to keep myself sane!

My symptoms seem to be confined to two or three:  head/body vibrations (buzzing feeling) when I try to fall asleep (causing insomnia), a rumbling tinnitus in my ear, and tiredness (which may or may not have to do with the fact that I'm back ON sleep medication.)

On the medical end of things, here's the scoop.  My LLMD responded to my e-mail in a very timely manner (bless him!), and he told me to re-start my azithromycin and diflucan (for yeast).  Thankfully, I had some of these meds leftover, and I was hanging onto them for just such an occasion. LOL  (Perhaps I should have thrown them out when my treatment ended in November, then I wouldn't be in this mess!  Not that I'm superstitious or anything.) 

I also sought a second opinion from another LLMD, Dr. Marty Ross, who has a fabulous website and Facebook page called Treat Lyme and Associated Diseases.  Dr. Ross will answer brief questions on his Facebook page (same name as his website).  He told me that my symptoms are likely the result of a relapse, and that when the germ is not effectively killed off, then 6-8 weeks after stopping the antimicrobials, symptoms will return.  (Yep, I was at the 7 week mark.)  He suggested that it could also be from yeast overgrowth, which would cause an increase in cytokines, and would trigger the same sorts of symptoms as the Lyme bacteria would. 

Dr. Ross suggested that my next round of treatment include "cyst busters" to deal with biofilms, for 4 months.  OK...been there done that with Flagyl.  That wasn't so good, as the Flagyl caused elevated liver enzymes and I had to discontinue it after 2.5 months.  This time, I'm going to discuss the herbals Banderol and Samento with my LLMD, as apparently these herbals deal quite effectively with all three forms of the Lyme bacteria.  You can read all about Banderol and Samento on the Treat Lyme and Associated Diseases website.

I hope and pray that my LLMD will agree with the "other opinion", so that I can have peace of mind about how to proceed.  I really do feel that I need to tackle this again aggressively.  I don't want to do a patch job, and end up in the same place 6 months from now.

So, that's the physical side of things.  Next post, I'm going to discuss the mental/emotional side of what I'm going through.

Thinking of you all.......all of my cyber friends and strangers out there......hoping this post finds you well, or at least improving in your health.

Many blessings!

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!