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.)

Where can you purchase supplements for Lyme?

All Lyme patients know that supplements are regularly prescribed to help in the healing process. Prior to contracting Lyme, I rarely took supplements.  Once in a while, I would buy a container of multivitamins, and I would take vitamin C or echinacea if I felt a cold coming on.  But that's about it. Now, it's a whole different story.  I'm well acquainted with the alphabet.....you know, vitamins A, B, C, D, and E.  I take some supplements to help with inflammation.  I take the "brain supplement", Omega 3.  I take supplements to boost my immune system.  I need high-dose iron because my ferritin gets too low without it.  I feel like a walking pharmacy!  Supplements are without a doubt the most expensive part of my Lyme disease treatment.....even more than the antibiotics and LLMD appointments!  Crazy!

Some supplements I purchase at the drug store, but not too many.  Most doctors recommend pharmaceutical grade supplements.  What does that mean?  I'm no expert, but my understanding is that supplements vary in their quality.  Cheaper versions may have more fillers and less of the actual "ingredient". I do buy my vitamin C (Ester-C) and iron at Costco because the price is really good.  For the others, I go to the health food store.  Then, there are some supplements that I purchase online through LLMD Dr. Marty Ross' website at www.treatlyme.org.

Dr. Ross has a great online store and he explains exactly how he uses all of the supplements in his videos which are on the website.  He discounts the products as much as he can according to the agreement with the supplier which he must adhere to.  I have found the online store to be reliable, except for one time when it took a whole month for my product to arrive.  I only paid for regular shipping, not expedited shipping. Usually that's not a problem, and the item arrives in about 2-3 weeks.  This particular time, it took so long I thought that the package had gotten lost.  I traced the package and learned that items shipped from the online store go from his office in Seattle WA, to Los Angeles for sorting, then back up to Ontario, Canada where I'm from.  That's one long trip!  I think in the future, I will pay for the faster shipping method.

I found out last week that naturopath Dr. Angela Lee from Richmond Hill, Ontario has created a Canadian online store of her own.  The number of products she offers is not as extensive as Dr. Ross' site, but if you can find what you need there, it would be more convenient and faster.  The online store is at this address:  http://lymeessentialscanada.ca/pages/about-us.

Before I sign off, I just wanted to give a thumbs up to a great iron supplement.  I've been using this product for 3 years now, and I must say that it performs exactly like it claims, for me anyway.  No stomach upset, no constipation.  No adverse side-effects at all.  It is called FeraMax and is available at your local pharmacy.  I buy mine in a bottle of 100 at Costco as it's much cheaper that way.  Please note:  I have no affiliation with this company at all.  I just wanted to share with you a great product that has worked for me.  If you have reduced iron stores, do check with your physician first before taking this product.  Also, consult your pharmacist to be sure that there are no drug interactions (which is often the case with iron).

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 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!   

Thank you, Lord, that I can exercise

OK, I can hardly believe that those words went through my head earlier today!  I must be fevered or something!  I am not a person who loves exercise......never have, likely never will.  But I was truly thankful that today, I was able to take a 25 minute walk!  Wow!  I haven't done that in about 20 months.

Before I became ill with Lyme disease, I used to walk about 3 times a week, mainly to maintain my weight or lose weight when necessary.  Once Lyme got a hold of me, exercise, even mild exercise, was absolutely impossible.  I was too weak.  I remember taking a light, slow stroll around the block with my husband and kids after I had been ill for about 4 months, and my head started to pulsate and I was so fatigued.  I had to make my way back to the house to lay down.  It was just awful.  This was before I received my diagnosis, and I wondered what could be causing such bizarre symptoms.

I've been avoiding exercise these past few months, because I'm still suffering from some fatigue.  But I realize now that exercise and healthy eating will be necessary to get me into the home stretch of my recovery.  Exercise gets everything moving inside and helps the antibiotics to better circulate through the body.  It helps with lymphatic drainage, and with boosting immunity.

I'm also going to re-commit to a YF SF diet (yeast-free, sugar-free).  And I'm going to do my best to get those 'whites' out of my diet, too:  white flour, white pasta, white rice, white potatoes.  They're all so bad for you, as they convert quickly to sugar in the body.  Sugar feeds Lyme (and cancer, by the way), so it's best to eliminate those foods for optimal health - even if you're not sick.  If you're going to mow down on a baguette, you might as well just have a Mars bar!  Very little difference in the effect they have on your body.

I'm hoping that my commitment to exercise and healthy eating will help me shed these unwanted pounds I've gained.  When I first got sick, I lost 13 pounds very quickly which brought me to my desired weight.  Once I started on meds, I started to put weight on rapidy, and gained 23 pounds.  Yikes!  I've never been heavier in my life, except for pregnancy.  It's time to get serious about this.  It's going to be very hard to shed the pounds, I think, because the meds are working against me.  So, we'll see how it goes. 

I decided to try another supplement to help in the weight loss department.  I can't believe that I'm voluntarily adding ANOTHER supplement to the regimen.  Here it is - raspberry ketones.

Maybe you heard about these on Dr. Oz.  I figured that he really does his research before recommending something to his viewers, so I'm going to give them a try.  They are totally natural, extracted from raspberries.  They apparently help immensely with weight loss and appetite control.  Do your research before purchasing, as you want ones produced in Canada or the U.S. to ensure purity.  Here are a couple of links to check out to learn more about raspberry ketones.

Dr. Oz video

Advice from a dietitian on raspberry ketones

The dietitian in the second link recommends a particular brand.  I decided not to order that brand because there are other ingredients included in the capsules, such as grapefruit powder, which might interfere with my medications.  I wanted one that was 100% raspberry ketones.

I'll let you know how it goes!

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!