Overcoming Insomnia

Insomnia has to be one of the most brutal symptoms of Lyme disease, and so many of us suffer from it.  Prior to 2011, when my Lyme disease appeared, I never EVER had a problem sleeping.  But it has been a struggle for 6 long years now.

Some Lyme sufferers can't sleep, while others sleep too much!  How bizarre is that?  All I can say to that is that Lyme messes with our brain chemistry - hormones, neurotransmitters, cortisol, etc. - and creates a problematic situation that is not easily resolved.  In addition, we might end up with thyroid or mitochondrial issues that can worsen our fatigue.

I encourage you to work with your doctor, naturopath, and LLMD to do whatever it takes to get you sleeping.  Sleep is crucial to healing.  I have had some success with the use of melatonin, 5-HTP, and zopiclone, but there are many more options out there.  Gabapentin was disastrous for me and it took me a very long time to wean off of it due to severe withdrawal symptoms.  Every person is an individual and what works for one may not work for another.  Experiment with various supplements, and if necessary, prescription medication.  But I highly recommend that you do this under the guidance of an experienced medical professional who can help you with dosing and drug interactions.

Here are a few resources to help you in your quest for a decent night's sleep:

1. ProHealth, "Five Supplements I Use to Cope With Insomnia"

2. Connie Strasheim, Beyond a Glass of Milk and a Hot Bath  (Kindle edition)

3. Dr. Marty Ross, Sleep in Lyme Disease  (Dr. Marty Ross' articles require a subscription to his online Lyme book, but it is well worth the money!  He provides an enormous amount of invaluable information on his website.)

Sleep, glorious sleep!

Oh my, this fall is passing by so quickly!  Time doesn't usually do that for me; it's usually slooooow, but not this year!  Soon it will be time for winter boots and Christmas preparations.

So how have I been doing?  On the Lyme front, VERY well!  My typical Lyme symptoms are still under control, and I've been able to wean completely off sleep medication.  For that I am so, so grateful.  I've been sleeping wonderfully (i.e., falling asleep easily and sleeping straight through with minimal wake-ups in the night) which is something I was deprived of when I was in the grip of the illness.  That said, I'm not sleeping LONG ENOUGH - totally my own fault for going to bed too late.

For all of the Lymies out there, here is one of the most important pieces of advice......GET ADEQUATE SLEEP!!!  It's important for your healing.  It's also important to help keep the Lyme in remission because our body repairs itself at night and adequate rest improves the immune system among other things.  Wow, I sure notice a difference in my life when I'm not sleeping enough.  I drag myself around all day, feel so lethargic after work, have no motivation or energy for exercise, and crave sugar to give me a boost.  Bad on all fronts. 

If you have Lyme and are suffering from insomnia, I urge you to speak to your LLMD about temporary solutions.  I absolutely hated the idea of being on sleep medication, but realized it was necessary.  I was so afraid of becoming addicted to it.  The sleep medication I used, zopiclone, is not "technically" addictive.  However, your body can develop a tolerance to it and require more and more.  When I decided to try getting off zopiclone, I weaned off very slowly over many months, cutting my pill in half, then in quarters.  Then, I got a lower dosage pill and cut that one into quarters.  By the time I stopped taking it, the tiny bit I had been taking really wasn't doing anything for me anyway, so it was pretty easy to just quit at that point.

On that note, let me wish you all the best in your quest for good sleep. 

 

What will your treatment look like?

 

I know how scary it is to go to your first appointment with your new Lyme-literate medical doctor (LLMD) and come away with a handful of prescriptions.  So many thoughts swirl around in your head:

• Are all of these drugs really necessary?
• Why so many?
• Can my poor body handle all of this?
• How am I going to afford this?
• Am I crazy to do this?
• Am I crazy not to do this?

Yup, I get it!  But honestly, I think that by the time you visit your LLMD, you're at the end of the line of those who can help you; you've seen every Tom, Dick, and Harry specialist out there.

After visiting two LLMDs and getting the dreaded diagnosis, and after thinking about the scary treatment options ahead, my self-talk sounded something like, "What do I have to lose?  Absolutely nothing.  Could I feel any worse?  Could life be worse?  I'm in pain.  My anxiety is through the roof.  I'm off work on sick leave.  My family is taking care of my house and kids because I can't do anything.  I have nothing. to. lose."

You might be wondering what Lyme treatment may look like for you.  The International Lyme and Associated Diseases Society (ILADS) had just published new guidelines for treating chronic Lyme disease.  Now please don't confuse ILADS with the IDSA (Infectious Diseases Society of America). 

ILADS = good

IDSA = bad 

 

Doctors in Canada are unfortunately bound by the rules of the IDSA for Lyme which is why they get in big trouble if they prescribe long-term antibiotics for Lyme.  (Hopefully Elizabeth May's Bill C-442 will change this.)  IDSA guidelines state that Lyme is hard to catch, easy to treat, and 3 weeks of antibiotics is enough to kill all of the Lyme bacteria.  From my personal experience and the experience of thousands of others, these guidelines are FLAWED.  If you want to understand more about the politics behind all of this, do watch Under Our Skin, an award-winning documentary about Lyme disease.

 

But I digress......

 

To learn more about the new ILADS guidelines, and to read them for yourself, click here.

 

To check out another set of guidelines, created by LLMD Dr. Marty Ross from Seattle, check out his website Treat Lyme and Associated Diseases.  *Dr. Ross is now asking for an inexpensive subscription ($20/year) to access the full contents of his website and treatment manual.  He is trying to recoup the cost of running the site.  It is a very valuable resource and has been so helpful to me.  He also holds free webinars a few times a month that you can sign up for.  He's a fantastic doctor.

 

Also check out Dr. Richard Horowitz's book Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease.

 

If you're interested in knowing what my own treatment journey was, check out this blog post.

 

The key to getting well is to

1) Obey your physician and follow all of his/her advice carefully. 

2) Persevere; things will improve over time.

 

OBEDIENCE and PERSEVERANCE!

 

All the best to you on your journey.

 

It's June! Who hooooooo!

Nothing makes me happier than June.  Well, July and August are pretty good too, but there's just something about June that allows me to finally exhale and begin the process of relaxation.  OK, so I can't really relax for another couple of weeks, after my report cards are submitted, but there is this out-of-the-ordinary calmness in me knowing that my job is winding down for the year.

Here is a picture of what was on the agenda today.

It's planting season, and these beauties will soon be making their way into pots to adorn our abode. I'm also looking forward to planting and using more herbs this year - chives, dill, parsley, basil, rosemary, thyme, and mint.

It was a rough winter, not only in terms of the horrible bitter cold we endured, but also with my health. I'm therefore quite glad to bid it farewell.  I dealt with a Lyme relapse in January, got back on antibiotics in March, and have been trying to get some symptoms under control.  I'm so happy to report that I think I've finally turned the corner!  I actually feel half-decent!  I'm certainly not 100%, but I don't know if I'll ever achieve that again.  Today I feel about 80-90%.  It might be different tomorrow.  Each morning is like a box of chocolates that way.....to quote Forrest Gump.  "You never know what you're gonna get."

For a few weeks I've been battling terrible tiredness.  I wouldn't call it fatigue, just tiredness.  I suspect that it is medication induced.  I'm currently taking minocycline and the pharmacist said it can be sedating.  Perhaps in a few months I'll be able to reduce the dosage and I'll perk up a bit.

Of course I still have so many questions:  How long should I stay on the antibiotics?  Will I ever get off them?  Will I always relapse?  Will I ever lose this weight I've gained since my illness started?  Will I ever feel "not tired"?  Will I be able to handle my job next year?  Will this crazy Lyme situation ever get sorted out in the Canadian medical system?

There are too many unanswerable questions, so the only alternative to driving oneself crazy is to wake up in the morning and appreciate each day for what it is.  Live one day at a time.  Practice gratitude. Thank God for the blessings in your life and even the hard times, for it is in those hard times that He teaches us so much and develops our character.

I hope, despite how you feel, that you can find one (or 10!) things to be thankful for today.  I wish you all a beautiful summer.

Blessed Be Your Name

by

Robin Mark

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!

Out of the Darkness and Into the Light - Lyme Disease and Mental Health

Here is a post I've been wanting to write for a while to encourage those of you who find themselves in the grip of depression or anxiety, brought on by Lyme disease.

Thankfully, discussing mental health is not as taboo as it once was, with high-profile individuals choosing to speak out about their struggles.  Clara Hughes, a Canadian six-time Olympic medalist, is the first one who comes to mind.  Clara has partnered with the Canadian Mental Health Association and Bell to bring awareness to depression, which hit her during her amateur career.  Perhaps you have seen her public announcements on TV in the past year.  I applaud her courage.

The nice thing about watching Clara on TV is to see that big smile on her face, and true joy and happiness in her heart.  It's a tangible reassurance that a person can emerge from depression and live a happy, fulfilling life. 

Let me tell you what depression and anxiety are NOT:

They are not feelings that can be controlled.
They are not feelings that you can "snap out of".
They are not necessarily caused by one's thought life.
Depression is not just "feeling down" about something.
Anxiety is not just "worrying" about something.

Now let me give you a definition of what they ARE:

Depression:  Depression is a medical illness that causes a persistent feeling of sadness and loss of interest.  Depression can cause physical symptoms, too.  More than just a bout of the blues, depression isn't a weakness, nor is it something that you can simply "snap out" of.  Depression is a chronic illness that usually requires long-term treatment, like diabetes or high blood pressure.  But don't get discouraged. Most people with depression feel better with medication, psychological counseling or other treatment.  (Source:  Mayo Clinic website)

Anxiety:  Generalized Anxiety Disorder, or GAD, is an anxiety disorder that affects about 5% of the population. People with GAD worry excessively and uncontrollably about daily life events and activities. They often experience uncomfortable physical symptoms, including fatigue and sore muscles, and they can also have trouble sleeping and concentrating.

Panic disorder is an anxiety disorder that affects about 3.5% of the population. People with panic disorder experience unexpected and repeated panic attacks. They become terrified that they may have more attacks and fear that something bad will happen because of the panic attack (such as going crazy, losing control, or dying).  (Anxiety BC website)

Researchers know that problems with brain chemistry can contribute to the development of anxiety disorders. Certain neurotransmitters (chemical messengers) in the brain involved in anxiety include serotonin, norepinephrine, and gamma-aminobutyric acid (GABA).  Researchers have also shown that changes in activity in certain areas of the brain are involved in anxiety.  Many anxiety disorders run in families and likely have a genetic cause.  (Source:  Canadian Mental Health Association website)

Honestly, if you have never personally experienced an anxiety disorder or clinical depression, it may be hard to relate.  We all have bouts of worry and the blues; that's just part of life.  But anxiety and depression as mental illnesses go far beyond that.  They take over your body; they take over your life.  They are truly debilitating.  And you just can't control it.

So what does all of this have to do with Lyme disease?  Well, anxiety and/or depression can be symptoms of Lyme.  Doctors who are members of ILADS (International Lyme and Associated Diseases Society) completely recognize neuropsychiatric Lyme.

And it happened to me.

My very first Lyme symptom was a strange vibration in my head which prevented me from falling asleep.  The next symptom was a horrendous anxiety.  These were followed by a host of other physical symptoms which I outlined in My Lyme Story.  Yes, of course I was "worried" about my first symptom, but the anxiety was NOT a result of that.  The anxiety was a stand-alone symptom, an uncontrollable symptom, and an unpredictable symptom.  It was not based on my thoughts.  It was a feeling of severe inexplicable fear that would wash over me, rising up from the pit of my stomach.  It reared its ugly head whenever and wherever it wanted.  I remember the most horrible feeling in my gut came on one time as I was shovelling the driveway!  Perhaps I was suffering more from "panic disorder", which is one form of anxiety.  Coupled with my many strange physical symptoms, I knew that something was terribly wrong with me. 

As much as I avoid taking unnecessary medication, I had no choice but to rely on benzodiazepines for a time (e.g., Xanax and Ativan).  I was thankful for them, as they kept things under control when that awful feeling came on every day.  But when I learned that I might develop a tolerance to them over time with regular use, I chose to switch to an SSRI (selective serotonin reuptake inhibitor) to control the anxiety while my Lyme disease was being treated.

Lyme disease causes inflammation in the body, and I believe that the infection caused some slight brain swelling or caused my neurotransmitters to misfire.  Regardless, the result was dreadful.  I recall searching for answers online, and listening to a lecture by Dr. Daniel Cameron, an LLMD and past president of ILADS, as he discussed neuropsychiatric Lyme.  He said that Lyme patients may need antidepressants as part of their treatment.  In some small way, that comforted me because at least I knew WHY I had developed the severe anxiety.

Slowly the SSRI began to take effect, and over time I was no longer controlled by the anxiety.  At the same time, I was on antibiotics for the Lyme, so they were working together to heal me.  I stayed on the SSRI for a year and a half and then tapered off.  I'm no longer in need of that medication.  I emerged from that dark cave into the light of day!  And like Clara Hughes, I can smile again and enjoy life.

I do have some tips/advice for those of you who may be starting psychotropic medication in conjunction with Lyme treatment:

1.  SSRIs can initially increase your anxiety.  Yup, it's true!  This is why my doctor suggested that I use a benzodiazepine along with the SSRI at the start.  After a few weeks, I was able to drop the benzodiazepine entirely.
2. Sometimes, an SSRI can cause suicidal feelings, in which case you must go to the nearest ER or contact your doctor immediately.  There are many different SSRIs on the market, and you may have to experiment to find the one that works well for you.
3. SSRIs do not have an immediate effect.  You can begin to see improvement after about 2 weeks, but it can take up to 3 months for the full effect to be achieved.
4. For some people, including myself, it can be hard to come off an SSRI because of withdrawal symptoms.  They should never, EVER, be stopped cold turkey.  You must taper off them over a course of a few weeks.  In my case, however, I had to taper off over a course of about 5 months, otherwise I would develop "electric shock sensations" in my head.  This is a fairly rare, but entirely possible withdrawal symptom, which is noted in the literature for SSRIs.  To taper, my doctor wrote a prescription to have the drug compounded into a liquid form, and then I could reduce the dosage gradually down to a miniscule amount.  This gave my body time to adjust to the reduction of medication. 
5. SSRIs can cause weight gain.  You might crave sweets and carbs while on this medication.  So be careful, or else you may find yourself needing to lose 30-40 lbs. by the time you're done.

I would like to add one final note about an unrelated drug, Lyrica.  Have you seen the commercials for that on TV?  Like most drugs, the benefits are advertised in the commercial, and then the LONG list of potential side-effects is listed.  Sometimes the list is so long with such serious side-effects that the commercial is laughable!  Lyrica is a pain medication prescribed to individuals who need particular nerve pain control.  Often, individuals with Fibromyalgia take this medication.  I understand that it greatly helps many people.  A neurologist I saw thought that it was worth a try to see if it calmed those vibrations in my head.  But all it gave me was a horrible depression with daily crying spells.  Let me tell you this....I have never been an easy crier, and I have never suffered from depression, so this was all new to me.  Lyrica made those tears flow like a tap.  No one really picked up on it for a while, but one of my doctors suggested that I go off Lyrica, and the depression and crying lifted immediately and have never returned.  All this to say....read up on the side-effects of all of the drugs you are taking, and keep track of any new symptoms.  Consult your doctor if anything unusual crops up.  It may not be the right drug for you. 

Please know that counselling and prayer were a huge part of my healing as well.  Books such as A Place of Healing - Wrestling with the Mysteries of Suffering, Pain, and God's Sovereignty by Joni Eareckson Tada and Prayers of Hope for the Brokenhearted by Jill Kelly, helped get me through those rough times.  Call out to God and let Him wrap His strong arms around you.  Check out my Peace and Hope tab if you're not sure where to start.

I want to leave you with this encouragement.  Anxiety and depression, whether caused by Lyme disease or not, can be controlled or even cured.  Talk to your doctor and seek counselling.  And above all, do not lose hope!

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.

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!

The cost of Lyme treatment

I've been wanting to post this for a while to give those of you who are just embarking on this journey some idea of what this is all going to cost you.

First of all, things may be different between the U.S. and Canada with regard to private insurance.  I have read, for instance, that insurance companies in the U.S. will not pay for more than a month's worth of antibiotics because of the IDSA guidelines, but I have not found that to be the case with my insurance company in Canada.

Here is a breakdown of what you can expect.

Please note:  These are the prices I paid in 2011.  I know for a fact that some fees have gone up since then, especially for the LLMDs.

1. IGeneX tests - This will be one of your first expenses, perhaps before you even see a Lyme-literate medical doctor (LLMD).  The tests will cost you anywhere from $200 - $1200 depending on what tests you order.  The most important test for you to get is the Western Blot (both the IgM and IgG). These 2 tests will cost about $100 each.  I chose to do the basic Lyme panel, all the co-infections, and the CD57 test, so my cost was around $1200.  But don't feel that you have to do all of that!  Some LLMDs don't even recommend spending the money on the co-infection panel because there are so many strains of these infections, but the tests only cover one or two strains.  In all likelihood, the test will come back with a negative result for co-infections even if you are infected.  Let your LLMD give you a clinical diagnosis for those.  Sending your blood samples to California via FedEx will cost around $75.  (See my IGeneX Lab tab for detailed instructions about sending your blood to this lab.)

2. The initial consult with your Lyme-literate MD - This will cost you anywhere from $400 to $800.  The New York LLMDs are more expensive for whatever reason.  The NY LLMD that I saw charged $600 for the initial consult, whereas the Michigan LLMD that I go to charged $400.

3. Regular appointments with your LLMD - In my personal experience, regular follow-up appointments have been anywhere from $125 - $225 depending on how much time you spend with the physician.  However, the fees will vary from doctor to doctor.  Recently, someone told me that a doctor in Seattle charges $400 an hour!  So, do your research.  Some doctors will charge for e-mails, so keep that in mind.  At the start of your treatment, you are bound to have some questions, and e-mails will be inevitable.  Another thing to check out is how often your physician will need to see you.  Mine wanted to see me in person every 6 weeks.  Others require a visit in person every 6 months with a phone consult at the 3 month mark.

 

4. Travel expenses - Hotel, gas, meals.  Don't forget to factor these things in. 

5. Medications - Medications could cost up to $300 per month or more, depending on the medication.  Some antibiotics are cheap because they have been around forever.  Others are much more expensive.  The treatment for babesia, a co-infection of Lyme, is quite expensive.  Thankfully, my private insurance covered my meds right from the start.  I still consider that a miracle and I'm so grateful.

6. Supplements - They probably cost me about $100 - $200 per month.  Some supplements are cheap, while others (e.g. good probiotics, alpha lipoic acid, Omega 3) can be quite expensive.  Shop around.  With some vitamins, your basic drug store variety is fine, but with other supplements, you will want to pay for a better quality pharmaceutical grade supplement.  You'll need to research this and ask your doctor about it.

7. Other "paramedical" appointments:

Naturopath – Insurance covers some, so I pay $35 every month or two.

Counselling - After insurance coverage, it cost $90 - $180 every month depending on how often I went.  Very expensive, but very necessary!  Find a counsellor who BELIEVES you regarding your Lyme diagnosis, and who will teach you how to deal with everything emotionally.
Massage therapy - I never did this, but it is helpful for many people.

 

I know that when you start to add this all up, you might wonder how on Earth you will manage this.  Take it one step at a time.  Start with the IGeneX test and the diagnosis by an LLMD.  You're looking at about $800 to get these 2 things done.  Then, go from there and try to figure out how you might fit the treatment into your budget.  You may need to cut some things out of that budget for a while:  no new clothes, no vacations, no entertainment, no meals out, etc.  You may be surprised at ways you can cut back to come up with the funds.

 

If you need to go a step further, you may want to consider finding a way to borrow about $10 000 - $15 000 which would hopefully cover your entire treatment (provided that your meds are paid for by insurance).  Could you borrow from your line of credit?  Would it be possible to sell one of your cars?  These are just thoughts.  I don't want to presume to know and understand anyone's personal financial situation.

 

But all this to say.....it WILL require some sacrifices!  But it's for your health, and without that, you have very little.  This is a situation that will hopefully end at a certain point in time.  For me, it will have been a year and a half of financial pressure by the time I'm done treatment, but at least I'm now back to work and able to make a living and contribute to the family finances once again.

This is an investment in your future.

P.S. We're currently trying to have my Lyme expenses recognized by the Canada Revenue Agency for a medical deduction on our income tax.  All of our receipts have been submitted, and now we're waiting.  If we succeed, I will consider this a small victory for Lyme sufferers.  Stay tuned....

(Update:  Check out this post to find out what happened with the Canada Revenue Agency.  Good news!) 

My Medications and Supplements

I've been on treatment for 16 months now.  One common question I am asked is what medications and supplements I have been prescribed during this time, so I will list them for you here.  I have often found it helpful to see what medications and supplements other people have been on.

Please note that I am not endorsing any particular treatment for any particular individual.  You need to have your health monitored by a Lyme-literate medical doctor. 

Different doctors have different philosophies.  Some are more aggressive in their treatments than others.  The first LLMD I saw prescribed 5 antibiotics for me at one time.  My next LLMD preferred to go the 'slow and steady' route by prescribing one antibiotic at a time.  Other LLMDs add herbals into the mix. 

If there is anything I've learned, it's that there is no one 'recipe' for treating Lyme disease.  Oh, wouldn't it be GREAT if there were?  Perhaps one day.  For now, everyone's situation is different, and everyone responds differently to the current treatment options.  Some people do just fine on oral antibiotics, whereas a small percentage do need the stronger IV meds to see improvement.  Thankfully, I believe that doctors are favouring oral meds over the IV, and are finding that the oral meds can be just as effective in many cases.

My Medications (This list will be updated regularly.)

1. June - Aug. 2011 (2.5 months)

- Doxycycline (100 mg, 3 times daily)
- Nystatin 500 000 unit, 1 tablet once daily (To control yeast)

 

2. Aug. - Sept. 2011 (1 month)

 

- Cefdinir 600 mg, once daily

- Nystatin

 

3. Sept. - Nov. 2011 (2.5 months)

 

- Suprax 800 mg, once daily (This is a 3rd generation cephalosporin just like Cefdinir.  I switched because my insurance wouldn't cover Cefdinir.  Suprax is not available in the U.S. but is available in Canada.)

- Nystatin 500 000 unit, 2 twice daily

 

4. Dec. 2011 - Mar. 2012 (3.5 months)

 

- Suprax 800 mg, once daily

- Flagyl 250 mg, twice daily

- Nystatin

*At some point during your treatment, you may be prescribed Flagyl.  It is an antibiotic that can treat Borrelia (the Lyme bacteria) in the 'cyst' form.  Other antibiotics can't kill it in this form.  Expect to experience a herxheimer reaction on this med. 
*I started with a very small dosage of Flagyl and slowly worked up to the full dosage.

*I had some intestinal issues and had to go off Flagyl for a time in Dec., but started up again in Jan.

*In Jan., Suprax was reduced to 400 mg once daily due to slightly elevated liver enzymes.

*In mid-Feb., I stopped the Suprax due to increasing liver enzymes, but remained on the Flagyl.

*It turned out that it was the Flagyl that was causing the elevated liver enzymes, so I discontinued that in March.  It took a few months for my enzymes to return to the normal range.

 

5. Mar. - Apr. 2012 (1 month)

 

- Minocycline 100 mg, once daily

- Nystatin

 

6. Apr. - July 2012 (3 months)

 

- Minocycline 200 mg, once daily

- Nystatin

 

7. July - Oct. 2012 (3 months)

 

- Zithromax 250 mg, twice daily

- Plaquenil 200 mg, once daily (It was reduced from twice daily because I was getting tingling in my foot.)

- Diflucan 200 mg, once weekly (To control yeast)

8. Jan. - June 2013 (6 months)

- Zithromax 250 mg, twice daily
- Nystatin
- Banderol and Samento (starting in March 2013)

9. July - August (2 months)

- Minocycline 200 mg, twice daily
- Nystatin
- Banderol and Samento

10. Sept. 2013 - ???

- Minocycline 200 mg, once daily
- Nystatin
- Banderol and Samento

I plan to stop the antibiotics by the end of October 2013, but stay on the Banderol and Samento as a preventative measure.
 

 Other Medications

 

- I took Lyrica for the vibrations in my head, from March - Sept. 2011.  It was a HORRIBLE drug, and I will NEVER take it again!!!  Obviously it is a great help to many, especially those with fibromyalgia, but it does list depression as a side-effect.  That is what happened to me.  I became so out-of-control emotional while on this drug.  I had uncontrollable crying spells that I couldn't understand.  I finally decided to go off the drug and the depression and crying spells stopped.  So....do watch out for this side-effect.

- I also took Imovane for sleep for over a year.  I was so concerned that I would never get off of it, but I was able to by cutting back my dosage very slowly, over many months. 

 

Supplements

 

Here is what I take daily:

 

- Digestive enzymes with each meal

- B6 (200 mg daily, in a divided dose)

- CoQ10 (150 mg daily)

- Vitamin D (4000 mg daily, in a divided dose)

- Vitamin E (400 mg daily)

- Omega 3 (1 capsule with each meal)

- Alpha lipoic acid (600 mg daily, in a divided dose)

- Green tea capsule (300 mg)

- 1 Multivitamin

- 1 B Complex

- Vitamin A (10 000 mg)

- Zinc (25 mg)

- Vitamin C (2000 mg daily, in a divided dose)

- Magnesium (250 mg daily)

- Iron (high dose capsules, 1 twice daily)
- B12 shots (Can be done up to once daily for energy, but I've been doing it about once or twice a month lately.)

- Probiotics:  acidophilus, s. boulardii (the refrigerated kind) *So very important to take those probiotics, at least 2 hours after your antibiotics.  I take them at bedtime.  Please click on the 'Comments' below to learn more about the importance of probiotics.

And click here to see how I organize all of this stuff!

It seems very overwhelming at the start, but honestly, you do get accustomed to this.  It will just become part of your daily routine, because you have no choice.  I really hate having to take all of these pills every day, at every meal, but I suppose it's a small price to pay for my regained health!   

Naturopaths could be our saving grace

The archived CBC News article below outlines the expanding role of naturopaths in Ontario.  I learned today that effective March 2013, naturopaths here will be permitted to prescribe antibiotics to their patients.  This is welcome news for Lyme sufferers!  I believe that naturopaths will be much more likely to diagnose Lyme disease because they are not biased by the outdated IDSA guidelines.  I believe they understand the Lyme situation at a much deeper level, and are more open to learning about it.  They could be our saving grace!  I just hope that they will not be constrained by the IDSA guidelines and investigated for 'unorthodox' use of antibiotics for Lyme disease cases.  Then, we would be back to square one.

Update:  It was explained to me by an assistant of Dr. Murakami that naturopaths have their own college which is different from physicians; therefore, they are not bound by the IDSA guidelines.  The College of Naturopaths in B.C. has Dr. Murakami as their resource person for Lyme disease.  I guess our Ontario College of Naturopaths will have to find someone to train and lead our naturopaths.  Anyway, this was really good news.

After extensive lobbying efforts, naturopaths across Canada are getting governmental green lights for greater prescribing rights.

Last Updated: Monday, November 9, 2009 | 4:51 PM ET

Anna Sharratt CBC News

Need an antibiotic for that nasty lung infection? Your naturopath may soon be able to prescribe it.  That's because naturopathic doctors are among a group of medical professionals that are pushing for expanded prescribing rights — and they're recently seeing success.

Ontario just became the second province in Canada to get the green light for increased prescribing rights for naturopaths. British Columbia granted its naturopaths the right to prescribe a greater number of medications — as well as high-dose vitamins, amino acids, hormones, botanicals and herbs — in April 2009.

The announcement follows the granting of more powers to other health professionals, such as midwives and registered nurses.

On Oct. 20, the province's standing committee on social policy voted to amend Ontario's Naturopathy Act through Bill 179, allowing naturopaths in the province to prescribe, dispense compound or sell a drug listed in the regulations.

The bill is expected to be approved by the end of the year.

Drugs still require regulatory approval

The news is being welcomed by naturopaths across the country. "We see it as a very positive step," Shawn O'Reilly, executive director of the Canadian Association of Naturopathic Doctors in Toronto, told CBC News. "It will allow access to naturopathic doctors to prescribe drugs and supplements formerly off limits."

Though naturopathic doctors will still be restricted in the types of drugs they can prescribe, O'Reilly says they will be able to provide patients with medication they would otherwise have had to seek at walk-in clinics and emergency rooms. She says this decision will decrease ER wait times, and clear the way for speedier treatment for the acutely ill.

While the amendment increases the number of medications naturopaths can prescribe, it is far from being a carte blanche. Many drugs will still be off limits to NDs, such as psychotropic medications, including lithium, which affects the mind and emotions, and chemotherapy drugs. In B.C., these drugs currently can only be prescribed by physicians, said Christoph Kind, president of the British Columbia Naturopathic Association in Vancouver.

He says the list is still under review by the province's regulator, though he foresees acute-care drugs, such as antibiotics, to be included under the new prescribing rules.

A story you will never forget

It is so worth it to take the time to watch such an amazing story of love, suffering, faith, and hope.  I continue to be in awe of this Canadian couple, following Christa on Facebook.  She continues to do remarkably well and has jumped back into life with both feet.  I am so glad their video is back up on YouTube to show the world the suffering imposed upon Lyme victims by the medical community who is so terribly ignorant of this illness.  Go grab a cup of tea or coffee, and settle in for an hour to share Christa and Justin's journey with them.

Our Story - Life & Lyme

Justin and Christa Vanderham

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!

Still on the roller coaster, but life is good

If you have come to my blog because you have been diagnosed with Lyme, I want to give you some encouragement.  Many blogs out there appear to focus on the negative, not because the writers are 'being' negative, but because Lyme is such an up and down illness.  It takes a long time to get well, so Lyme sufferers often feel unwell during their treatment.

I want you to understand that Lyme treatment is like being on a roller coaster.  You feel a bit better, then you feel ill again, then you feel OK for a bit, and this repeats itself over and over.

Once thing that contributes to not feeling well is the 'herxheimer reaction'.  This occurs when beginning antibiotic treatment, or changing antibiotics.  As the bacteria begin to die off, the body is overloaded with the dead spirochetes and is unable to dispose of them quickly enough.  Other articles I've read state that the dead bacteria give off neurotoxins.  You may feel flu-like, and your symptoms will feel worse.  But it DOES pass. 

When I started on doxycycline one year ago, I had a herxheimer reaction on my third day of treatment.  I felt flu-like, had the chills, and was tired.  It lasted for six days.  I have had many herxheimer reactions over the past year.  Lately, they seem to produce a terrible fatigue that lasts a couple of weeks.  I think I'm in the middle of one right now.  My doctor said to stop my antibiotics for a few days to help my body catch up with toxin disposal. 

There are many other things a person can do to help rid the body of toxins:  drink lots of water, squeeze the juice of a lemon into your water, take a bath with 2 cups of epsom salts.  Some people have an inability to get rid of toxins and have to take medications such as cholestyramine to help.

It's wonderful when a 'herx' passes, because then you usually feel better than you did before the herx.  That has been my experience, anyway. 

I started feeling very good around June 1, which is one year since starting antibiotics.  When I first saw my LLMD in June of 2011, I asked him how long it would take for me to heal, and he said about a year.  And what do you know......it was a year!  I was overjoyed in June, as I had more energy and was feeling so good, almost 'normal' on some days.  I started wondering when I might go off my meds!

But now, in July, I've had a bit of a backslide.  I started getting fatigued once again about a week ago.  Why would this be?  Am I having another herx?  Am I reacting to the full moon?  (Apparently, Lyme symptoms are worse then.)  I also found out that my thyroid levels have gone out of whack again, and I'm a bit hypothyroid.  That could certainly be contributing to the tiredness, too.  Hopefully, the thyroid problem will correct itself soon.  I discovered the root problem:  A pharmacist had ADVISED me that it was OK to take my Synthroid (thyroxine hormone) with my minocycline each morning.  Apparently, this is a no-no!  After double-checking with 2 other pharmacists and 2 doctors, I've been told not to mix the two.  The minocycline was likely preventing the full absorption of the Synthroid.  It's too bad I was ill-advised 4 months ago, and now will spend my summer 'tired'. 

I see my LLMD this week and have lots to discuss with him.  We might change up my meds.  Not sure.  I'll keep you updated.

But just so you know, and this is the encouraging part, I really AM feeling quite good, despite some lingering symptoms.  I am able to be a wife and mother, and do all of the things I need to do:  cook, clean, laundry, drive kids around, enjoy a movie with hubby, have company overnight.  I could not do ANY of those things a year and a half ago.  So, the antibiotic treatment has been worth it.  It has given me my life back. 

Things CAN improve......persevere and never give up hope!

Welcome to My Pharmacy

Prior to contracting Lyme disease, I used to take a multivitamin and a vitamin C each day, if I remembered to!  Here is what I take today.

                                                                                                                                                                 

I know, I know.......this looks CRAZY, doesn't it?!?  But these supplements have been recommended to me by my LLMD or by my naturopath.  Do I really need them?  I believe I do, and for these reasons:  my doctors SAY that I need them, I've learned about the purpose behind each one for Lyme healing, AND I'm feeling SO much better after one year of antibiotics + supplements.  There is no way that I'll be going off these anytime soon just to see what would happen!  I need to keep my immune system boosted in the best way we know how, in order to keep the spirochetes in check.

Here is how I keep track of them - the handy, dandy pill organizer.  I used to think that pill organizers were just for the elderly.  WRONG!  I don't know how I'd remember to take them all if it weren't for my organizer.  I fill it up every weekend, and I'm good to go for the week.  I typed up a chart on my computer of all of the medications and supplements that I take at various times of the day, and I use this to help me fill the organizer each week.  But I'm getting pretty good at knowing what goes where, without the cheat sheet.

Now those of you who have joined the Lyme Club will understand all about this and won't question me.  However, if there should be someone else looking at my blog who is not well acquainted with Lyme, I'm sure it will raise an eyebrow or two.  Here is the purpose behind the pills.

The antibiotics - Obviously to kill the bacteria
Nystatin - To help prevent yeast overgrowth while on the antibiotics
Digestive enzymes - To help with food digestion, which is a common problem in Lyme
Probiotics - To replace healthy bacteria in the intestines and prevent c. difficile
Vitamins - To boost the immune system
Supplements to help deal with specific symptoms.  E.g., CoQ10 for heart palpitations, B6 for nervous system symptoms, omega 3 for brain function 
Supplements to deal with specific deficiencies common in Lyme patients.  E.g. iron, magnesium

Thankfully, I take most of these supplements with food, so I just have to remember to have my pill organizer with me at each meal.  As recommended by my first LLMD, I take the pills at the beginning of my meal, after a bite or two of food.  This means that the rest of my meal will land on top of the meds/supplements in my stomach.  I have found that this method prevents the heartburn that I experienced when taking them at the end of my meal.

So where should you purchase your supplements?  I get them from several different places, depending on the supplement:  the drug store, Costco, the grocery store, the health food store, or my naturopath.  I've read that it's best to get "pharmaceutical grade" supplements and not "drug store" brands.  However, I have to balance that information with the COST.  Combined, these supplements are expensive, and have put quite a dint in our monthly family budget.  Buying everything from a health food store would get really costly.  If I can get certain supplements at Costco in bulk, I go for it.  With others, I choose a lesser priced drug store name brand.  I get my magnesium from my naturopath because I want a really good one that will be well absorbed.  It's good to do your research and weigh it out. 

So, as you can see, taking the supplements has a purpose.  I'm not sure yet what supplements will be required once I have finished with the medications.  I haven't thought to ask that question, as I'm not quite there yet.  But for now, I'll continue to follow this protocol.

                                                                Bon appétit!