The Aftermath of Lyme

I've wanted to write this post for a while, but hesitated because I didn't want to discourage anyone who is going through Lyme treatment currently.  Frankly, the last thing I wanted to think about when I was in treatment, was how my life might be different once it was all said and done.  My focus was on getting well enough to be the wife, mother, and teacher I was called to be.  And those things I certainly achieved in the end.  Therefore, if you are in the researching phase, or just about to start treatment, or even in the thick of your regimen, please know that I simply want to share my experience and give people a taste of what the future might bring after the fallout.

Firstly, let me encourage you by saying this:  I have no regrets whatsoever for going through Lyme treatment!  Long-term antibiotics (4 years' worth!) literally gave me my life back!  I have just begun my fourth year of teaching post-Lyme, and some days I still marvel at the miracle of being able to do my job again, especially considering that I am on my feet all day and have very little time to give my brain a rest throughout the work day.  I cook meals, clean the house, shop, organize my family's social calendar, and chauffeur my kids.  Just like any other mom!  I am grateful, especially on this Thanksgiving Day.

What, then, are the bumps in the road?  What has Lyme left me with that I wish I could still overcome?  The following things are my personal experience, and I do not want to imply that everyone will travel the same path.  But I don't think that most people emerge from Lyme unscathed.  Here are my continuing issues:

1) Body pain!  Oh the annoyance of constant pain!  OK, it's not unbearable or anything, but the stiff muscles and sore joints are just constantly there.  When I get up in the morning, I feel like I'm 80 as I hobble to the bathroom.  My left hip and my feet are the worst.  Getting up from a chair after sitting for a while is not fun.  It takes a few minutes to loosen up.  Why is this happening?  Clearly, there is inflammation in my body.  In all honesty, my diet hasn't been clean lately, so this could be exacerbating the problem.  In an effort to help my body, I've decided to go grain-free and sugar-free for a time.  The first 4 days showed a marked improvement in my pain.  It was quite miraculous, actually.  I could suddenly move and bend without much pain, and the stiffness in the morning was reduced by about 70%.  I'm going to try to continue this regimen, with the hopes of adding back some grains (rice, quinoa) eventually.  I think I'll stay away from wheat, though. Wheat Belly has convinced me that I need to try to live without it.

2) The weight gain!  Oh my!  I really don't feel or look like myself.  My LLMD warned me that people often gain about 30 lbs in treatment.  Well, I've gained about 37 lbs since I started treatment.  Sadly, I did not heed his advice to give up sugar and simple carbs during my treatment.  Slowly, the weight packed on.  I should have listened.  For all of you out there in treatment.....If your doctor wants you to eat cleanly, perhaps sugar-free, wheat-free, or yeast-free, please do it!  It will help your inflammation and help to prevent the weight gain.  I am happy to report that giving up the sugar and grains last week resulted in a 3.5 lb weight loss.  I was very pleased, because frankly, you get to a point when you wonder if anything will work.  Knowing that this weight loss may take a year is daunting for sure, but I have to focus on all of the positives.....not just the weight loss, but the improvement in my skin, sleep, energy, stamina, digestion, etc.

3) The flare-ups.  From time to time, I still get little flare-ups of my symptoms.  There may be a night when I go to bed and the head vibrations come on, preventing me from sleeping.  Sometimes I'm just plain tired.  Sometimes, I feel my body vibrating or hear some tinnitus in my ear.  In the past, I would go back on antibiotics when these things happened, but now I'm more willing to see if the flare-up will subside.  It has done so the last few times.  This leads me to believe that I'm not having a true relapse, but rather some inflammation due to any number of things, e.g., diet, lack of sleep, illness, etc.  This is motivating me to get my inflammation under control through diet, better sleep, and supplements.

4) Supplements.  If you thought you could ditch the pill organizer after your treatment is done, think again.  I think it's important to stay on certain supplements that will assist the body in staying as healthy as possible.  For me personally, I am going to re-start Omega 3, B complex, alpha lipoic acid, vitamin C, iron, magnesium, digestive enzymes, and probiotics.  I've been off everything, including all meds, for a few months now.  However, I see the importance in resuming my supplements, so tomorrow I'll be re-filling my organizer.  Once again, a handful of pills will be my appetizer before every meal.

5) Emotional changes.  It is very strange to see parts of my personality change since my illness.  I used to be a Type A person all the way.  Now, I let things slide a lot more.  I had never been a procrastinator, but lately have been more prone to this.  I don't really have the same fear of illness or death that I used to.  I think it's because I feel that nothing can possibly compare to the hell I went through when I was sick.  It has hardened me somewhat.  I'm not sure if these changes are good or bad, but things are just different now.  Going through something so traumatic is bound to change you forever, in one way or another.

6) Coming to terms with the things I can no longer do.

- I can't skate!  I love skating; I even bought a new, good pair of skates.  But my feet hurt too much.  They start to ache after about 1 minute on the ice. 

- I can't eat sugar or grains. 

- I don't sleep as well.  Insomnia was one of the first Lyme symptoms I had.  Eventually, it got much better with the help of sleep meds, but I need to be very careful now as the sleep disturbances can come on suddenly.

- I have to say no to church and community activities because my body just can't handle it anymore.  I'm tired....a lot.  After working, caring for my family, and school work I must do in the evening, I need to rest.  And I'm not going to feel guilty about it either.

- I can't exercise to the same degree that I used to.  My body is just too sore.

7) Always being on the look out.  Unfortunately, I don't think that chronic Lyme can be cured....yet.  It goes into remission, but the stealthy bacteria hide deep in our tissues and organs.  Dr. Marty Ross, LLMD, believes that most people relapse within 5 years of going into remission.  Great.  I'm always wondering if my flare-ups are actually a relapse.  It's hard to know until you ride them out.  This means that at some point, I'll likely need antibiotics again.  Will my LLMD still be practicing then?  I don't know!  He is heading for retirement.  It's a worry I wish I didn't have.

Well there you have it.  The truth.  But keep in mind that this is my truth, and it won't necessarily be your truth.  Please don't worry!  Focus on getting better, but learn from my mistakes and be sure to eat right and exercise to tolerance.  Give your body all the tools you can to help it grow strong again once your treatment is done. 

Wishing you all the best!





And the saga continues...

Gee, wasn't it just a couple of weeks ago that I wrote about going off my antibiotics....hopefully for good?  Thank goodness I didn't bother to celebrate because it would have been a terrible let down!

A week ago, a few symptoms crept back.....vibrations in my legs and body, and weird head vibrations when I'm falling asleep (which prevent me from actually getting to sleep).  Sleep meds have helped immensely and I'm taking some herbs/supplements to help my symptoms:  Banderol and Samento, and curcumin (along with all of my regular supplements).

My LLMD told me to wait it out and see if the symptoms would go away on their own.  Perhaps they are stress-induced.  Yes, it's been a stressful month.....4 family birthdays, report cards, and added workload due to my hubby having a brutal flu for a couple of weeks.  Lack of sleep, lack of regular exercise (although I am trying!), and a little too much sugar in the diet could also be contributors to my problem.  It's time to clean things up!

I have my next doctor's appointment in 2 weeks, so I guess I'll see what he will want me to do about this.  Go back on antibiotics???  I hope not!  But I'll do whatever I need to do to keep these symptoms at bay and be able to live a normal life.

I'm so enjoying the normality....even banality....of life these days, and never ever want to take the simple things for granted again!

The end of treatment (?)

In November of 2012, I announced my end of treatment with great fanfare!  How exciting it was to be DONE with antibiotics and to move on with my life.....permanently!  Well, that didn't last long, as about 7 weeks later, I experienced a mild relapse and went back on antibiotics.

I remained on antibiotics for another 12 months (just to be sure!), and added in the herbals Banderol and Samento for about 6 months.

So here I am again, ready to venture back into the world of antibiotic-free living!  I refuse to celebrate it, though, like I did last time.  In fact, I started tapering off the meds in December, and went off completely a couple of weeks ago without even mentioning it to anyone outside of my family.  It wasn't really a calculated thing.  I honestly just don't feel all that excited about the event this time around.

So why is that?

Well firstly, I can't be sure that my current good health will last once I stop the antibiotics.  Though I hope it will, you never know.  I don't want to feel a huge let down if a few symptoms creep back in a few weeks.  Secondly, Lyme doctors and researchers really don't know if a cure is even possible in chronic Lyme disease.  A reoccurrence might happen years down the road, requiring further treatment.  I think that Lyme will always have a place in my life, if not for the physical symptoms, then for the thoughts of it and how to keep it at bay.

So here is my Lyme ticker as of today.....the day that I "announced" my second attempt at stopping antibiotics.  I'm not going to stop the ticker from counting at the side of my blog, though.

 

Here's hoping that all goes well!  I'll keep you updated.

 

 

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!

THE END

Today is the day of No Mores!!!!!  I just got off the phone with my Lyme-literate medical doctor.  After 18 months of treatment for Lyme disease, I'm now D*O*N*E!!!  Yep!  No more antibiotics!  No more medication side-effects!  No more drug claims to submit!  No more bumpy rides through Michigan on I-69 every 6 weeks!  No more visits to Frankenmuth!  No more visits to Birch Run! (Wait a minute, what am I saying? We'll probably squeeze in Frankenmuth and Birch Run now and then, just for old times' sake!)

Thank you, Dr. L, for saving my life!  But the glory goes ultimately to God, who guided my steps, led me out of this crazy maze, and walked with me the whole way.  My prayer is now for those who will come after me, who will face these similar struggles.  I will do whatever I can to help anyone who asks, and to fight for changes in the way Lyme disease is recognized and treated in this country.  No one should have to go through this when we have the knowledge and ability to prevent this kind of suffering.

If you, or someone you know suspects that they may have Lyme disease, it is important to be evaluated by a Lyme-literate medical doctor.  Remission is definitely within the realm of possibility, with the right treatment.  I am living proof of this!

My quest for health

The approaching "end of treatment" date is sobering.  For the past few months, I've viewed the antibiotics as my safety net.  Sure, for the first year and a bit, those drugs were sustaining me, and then healing me.  But since I've been feeling well, they haven't had a significant purpose other than to insure that the bacteria have been beaten down sufficiently.  Soon, this safety net will be removed. 

ILADS doctors like to treat 2 months beyond the end of symptoms, and I'm currently weaning off the antibiotics.  I've gone from 2 doses of Zithromax daily, to one dose daily.  I'm having a phone consult with my LLMD next week, and we'll see what he'll do next.

Soon, my body will be on its own, needing to keep any remaining Borrelia burgdorferi at bay using only its beautifully designed immune system.  That means I need to support my immune system in the best way I can.  Sadly, I haven't been doing so well in that department, but it must begin to take on a greater importance in my life.

To that end, I joined a fitness club, something I haven't done in about 15 years!  I've certainly exercised in the past 15 years, especially when trying to lose my post-pregnancy weight, but it's been a very long time since I've had a club membership.  I decided it was time because I was having difficulty getting motivated to exercise.  Despite the fact that I have a treadmill at home, dozens of workout DVDs, and weights, I constantly found excuses to avoid exercise.  And exercise is what I need right now, not only to lose the 30 lbs I gained while I was sick, but to support my immune system.

So far, I've been doing the treadmill and the weight machines at the club.  I think I need to build up my strength a bit before venturing into a group aerobics class.  I'm dying to try Zumba, but I'd likely drop dead from exhaustion!  Perhaps I can ease into that class, doing a half class at first and working my way up.  If anyone has tried Zumba, I'd love to hear your thoughts.

I've also discovered the sauna!  I have a new appreciation for the Finnish and their natural approach to health.  I've been sitting in the sauna at the club for 15 min., just feeling all those toxins rising to the surface.  It's been great.

In addition to regular exercise, I've made a pledge to myself to work on other areas I've been neglecting:  eating well and sleeping an adequate amount each night.  I've definitely improved in the eating department.  I hauled out my old Weight Watchers information, and I've been watching my calories more closely.  I lost 2.5 lbs last week.  Who hoo!  As for the sleep, that is the hardest area for me.  I'm such a night hawk and thoroughly enjoy the quiet house at those late hours, so I've been cheating myself of a good night's sleep and dragging myself through the day.  That's certainly not good for the immune system.  I'm really going to work on that goal now.

For those of you reading this who might be very ill from Lyme disease, or who might be in the middle of treatment, know that it IS possible to feel well again, and to be able to make goals like this in the future.  When I was sick, these types of things were the farthest from my mind.  I was in survival mode.  And that's OK.  You can only do what your body will allow you to do.  But do have faith that your treatment will make you well again.  It really can happen.  It happened to me.

You are in my prayers.

Feelings of insecurity

I just got off the phone with the secretary of a helpful doctor I was referred to when I was very ill last year.  This doctor works at the sleep medicine clinic at one of our hospitals.  She is a psychiatrist who specializes in sleep.

Before I tell you about today, and the reason for the title of this post, let me tell you about this doctor.  Even though she was not well versed in Lyme disease, I did not feel demeaned by her.  She truly wanted to help me resolve my sleep issues, whether they were from Lyme (as I knew they were), or stress.  She never actually said, "Yes, I really believe you have Lyme!"  But she never discounted it either.  She listened well, and engaged in dialogue with me.  She encouraged me in my efforts to follow her "sleep plan" for me, and she never spoke condescendingly or in a reprimanding tone.  This doctor arranged to have a sleep study done for me very quickly, and when I was ready to come off of the sleep medication, she helped me out SO much.  I really appreciated her at a time when other doctors were shutting their doors to me.

So back to today.  I was to have an appointment with her this coming Wednesday which I knew would be my last appointment because I've been sleeping well for many months now.  (Hooray!  I never thought the day would come when my sleep would be restored.)  Anyway, the secretary needed to reschedule my appointment to an earlier time which unfortunately didn't suit my work schedule.  In the end, I just cancelled the appointment altogether.  I might as well free up an appointment time for someone who really needs her.  The secretary told me that if I should need to see her again beyond 3 months from now, I would need to be referred again, but the problem is that she is not taking any new referrals!

My heart sank.  For a little while, feelings of insecurity washed over me.  Here I am, at the END of this relationship, with no chance of coming back should my situation change.  I felt a bit scared.

Then I got thinking about what it will be like when I'm no longer seeing my LLMD (Lyme-literate medical doctor).  He literally saved my life!  And soon, I'll be let loose, out on my own, to "wait and see" what happens, if anything.

So why the fear?  If I've finished treatment, that's all there is to it, right?  Wrong.  The concern of relapse will always be a dark cloud overhead.  It's hard to fully eradicate the Lyme bacteria, Borrelia burgdorferi, once it's entrenched in organs and tissues.  As one LLMD wrote, "you can beat it down, but you can't beat it out."  Now this all depends on how soon after being infected that you begin treatment.  In my case, I don't know when I was infected.  I believe that the bacteria was dormant in me for quite some time before multiplying and developing into full-blown Lyme.  Although I started treatment 5 months after the onset of my symptoms, I may have been infected years before.  So who knows if I can ever really be "cured".  And that's the frightening part.  Being out on my "own" and no longer under the care of a doctor.

Those of you who know me personally will be thinking to yourselves, "Where is God in all of this?  Has Paula forgotten all He has done for her during her illness?"  Well absolutely not!  I remember every big and small thing God did to help me pass through this valley of the shadow of death.  I will never forget it.  But sometimes the fears and feelings of insecurity block out the other emotions.  I am human.  And that is when I realize that I need turn back to Him who can comfort me, protect me, help me, and who will never leave me or forsake me.  When I think on these things, it warms my heart and gives me that peace that transcends all understanding.

Despite the fact that relationships with my doctors will soon be ending, God is and always will be my Great Physician.  And no matter what happens, it's going to be alright.

A medical WOOT!

OK, I will embarrassingly admit it.  I actually had to look up the meaning of 'woot'!  Forgive me.  I'm middle-aged!  I'm a blogger, not a texter, so much of this lingo is lost on me.  But I'm learning.  So, here is the definition of 'woot':

w00t

From Wikipedia, the free encyclopedia

The term w00t is a slang interjection used to express happiness or excitement, usually over the Internet. The expression is most popular on forums, USENET posts, multiplayer computer games (especially first person shooters), IRC chats, and instant messages, though use on the World Wide Web is by no means uncommon.

 

So there you have it.....in case you, too, were wondering.  And what, you might ask, does this have to do with Lyme Disease? 

 

Well.....I got great news from my LLMD (Lyme-literate medical doctor) yesterday.  Woot, woot!  Because I've been feeling good for a couple of months, with no herxheimer reactions, he is going to start to taper my meds.  I should be off antibiotics by the end of the year.  Such fantastic news!

 

This news does bring with it a bit of worry, though, as I do have a natural concern about whether I will eventually relapse.  For now, I must try not to let my thoughts go there.  I need to remind myself that many people are treated successfully and do go into remission.  I need to keep my thoughts positive, because the thought of returning to that horrible, dark place of a year and a half ago, is nothing short of frightening.  And I just don't want to live in fear.

 

So for now, I'm going to enjoy this good news, and try very hard to keep my mind filled with good thoughts.

 

Woot! 

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!