Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Showing posts with label LLMD. Show all posts
Showing posts with label LLMD. Show all posts

Thursday, March 27, 2014

Lots of reading!



Way to go, Maclean's Magazine, for publishing a balanced article about Lyme disease.  The more we can educate people, the more people will take precautions.  After all, the best "cure" for Lyme is to never contract it in the first place.  Click here to read the article in Maclean's.

On a personal note, I thought I'd give you an update about my life with Lyme.  I stopped antibiotics around January 1 of this year, but re-started them a few weeks ago because symptoms started creeping back.  On top of that, I caught the worst cold ever 2 1/2 weeks ago, and it's still hanging on.  The cold, combined with the Lyme, has pretty much done me in the past 2 weeks. 

Yesterday, I had the worst fatigue I've had in a couple of years.  I came home from work, laid down on the couch, and could.not.get.up!  Hubby had to make dinner, do the dishes, run our son to an event, make the lunches, and drag me up to bed!  Thankfully, after a half-decent night's sleep, I'm feeling considerably better today, though still tired.

I'm trying to follow a detox diet currently, but I keep falling off the wagon!  The book that inspired me is called The Detox Diet by Toronto naturopath Natasha Turner.  Perhaps you've seen her on The Marilyn Show or Dr. Oz.  The book is fabulous, and I have no doubt that following the diet would do wonders for my (and everyone's) health.  So, I'll get back on it tomorrow and hopefully persevere a little longer this time.  With Lyme disease, it is very important to control inflammation by eating a healthy diet free of sugars and low in starchy carbs. 

I also purchased the book Why Can't I Get Better?  Solving the Mystery of Lyme and Chronic Disease by MD Richard Horowitz.  The book is much thicker than I realized when I ordered it, so it's not a quick read.  It chronicles Dr. Horowitz's practice treating Lyme for the past 25 years with lots of patient stories as well as valuable medical information.  If you have Lyme disease, it's worth it to have a copy of this hanging around for reference.  Dr. Horowitz has quite a sense of humour which shines through in various parts of the book.  Check out his Ballad of the Deer Tick on YouTube!

Hoping this post finds you well, with a happy heart despite circumstances.  Spring is just around the corner (at least I think it is!) and I know I am looking forward to warmer days, sunshine, flowers, and the yearly reminder that new life can spring from a cold, dark place.
 

Sunday, March 17, 2013

How is remission achieved?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for the reminder, Christa.  I needed that.

Tuesday, February 26, 2013

FAQ: "So why can't you get treatment for Lyme disease in Canada?"

Hi Everyone!

A while back, I mentioned that I had started to read Pamela Weintraub's book, Cure Unknown - Inside the Lyme Epidemic.  I'm 2/3 way through the book now, and all I can say is that it is excellent!  

 
This book is truly a must-read for anyone who wants to better understand the history of Lyme disease and the controversy surrounding diagnosis and treatment.  Weintraub is a fabulous writer, and she masterfully blends her family's personal story with the science and history behind Lyme.
 
One of the most common questions I'm asked is.....Why do you need to go to the U.S. for treatment?  Why don't they treat it here in Canada?
 
Wow.....that's a hard question to answer in a couple of sentences.  There is an entire history behind that question.  Just read chapter 32 - The Lyme Inquisition:  Doctors on the Run.  That will give you some background into the craziness of this illness.  I sat in a coffee shop this morning and brought the book with me to pass the time, and I just couldn't leave until I had finished that chapter.  Gripping.
 
If you have done any Lyme research at all, you have no doubt heard of Dr. Joseph Burrascano.  He was one of the first big U.S. Lyme doctors to treat chronic Lyme successfully, and also to be hauled up before the New York State OPMC (Office of Professional Medical Conduct) in 1999.  For all intents and purposes, he WON that hearing, and we in the Lyme community have benefitted greatly from his research and expertise since that time.
 
In 1993, Dr. Burrascano had spoken before a Senate committee on Lyme disease, chaired by Ted Kennedy.  His words were sharp and cutting:
 
There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight.  Unfortunately many of them act unscientifically and unethically....They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own.  They exert strong, ethically questionable influence on medical journals, which enables them to publish and promote articles that are badly flawed.  They work with government agencies to bias the agenda of consensus meetings, and have worked to exclude from these meetings and scientific seminars those with alternate opinions.  They behave this way for reasons of personal or professional gain, and are involved in obvious conflicts of interest....Some of them are known to have received large consulting fees from insurance companies to advise them to curtail coverage for any antibiotic therapy...even if the patients will suffer.  This is despite the fact that additional therapy may be beneficial, and despite the fact that such practices never occur in treating other diseases.
                                                                                                         Cure Unknown, p. 221
 
I am happy to report that since then, the U.S. has come a long way in its understanding and treatment of Lyme disease.  Yes, there is still a divide in the medical community.  But one by one, states are passing laws allowing physicians to treat chronic Lyme disease with long-term therapy.
 
Sadly, Canada is currently at the spot where the U.S. was in the 1990s.  Physicians are bound to adhere to the outdated IDSA (Infectious Diseases Society of America) guidelines, or else suffer repercussions from the medical boards.  Canadian doctors who have helped a great many Lyme sufferers in the past few years, have been shut down one by one.  Some have chosen retirement, and others have stopped treating Lyme patients cold turkey.
 
I think the reason for this lag in understanding is the simple fact that Lyme disease is relatively new in Canada.  It has been working its way northward for many years, and now it is HERE in full bloom.  But doctors here don't know what to do with it!  They have no training in how to recognize it, diagnose it, and treat it properly.  So, Canadian Lyme patients are forced to flock to the States and pay out of pocket to regain their health.
 
In a nutshell, there's your answer to, "Why can't you get treatment in Canada?"


Friday, January 11, 2013

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!

Sunday, January 06, 2013

Relapse or just a bump in the road?

I must admit that I'm worried.  Here I am, on the tail end of my Christmas holidays, ready to return to work tomorrow, and I've got a little problem.  A couple of Lyme symptoms have returned.  As you may recall, I've been OFF antibiotics since November 21, 2012, 7 weeks now, and that was a day of great celebration.  I was DONE!!! 

Well, perhaps I'm not actually done.  I guess we'll see what my LLMD has to say.  I hope I'll be able to speak to him soon for a phone consult.

The two symptoms that have reared their ugly heads once again are the soft, low rumbling sound in my right ear, and the body vibrations that came on as I was drifting off to sleep last night.

As soon as I felt those all-too-familiar vibrations, I perked up and began to PANIC.  And then try to sleep when you're in THAT state!  My poor hubby had to listen to my anxieties at 2:00 a.m., but I'm so glad he was there.  Bless his heart; he was wonderful and comforting.  Out of desperation, I took 1/2 of an Imovane (zopiclone) at 3:00 a.m. to get some rest, and at least I squeeked out 6 hours.

My anxieties are numerous:
- I DON'T want to have sleep problems again just when I've nicely settled back into my job and family life!
- I DON'T want to have to start to use Imovane again when I've finally gotten OFF the stuff!
- I DON'T want to start having anxiety and panic attacks over this!
- I DON'T want to fill my body with antibiotics again!
- I DON'T want to have to deal with the naysayers in my life again who have pretty much stopped harrassing me since I finished up treatment in November!
- I DON'T want to have to deal with my family doctor again, and have to explain about this "relapse" and why I'm on antibiotics AGAIN, and have them think I'm absolutely CRAZY!
- I DON'T want to travel 3 hours to my LLMD anymore!
- I DON'T want the out-of-pocket expense anymore!

I'm just so D*O*N*E with ALL of that!!!!!!!!!!!!!!!!!!!!!

I suppose that's enough to cause any sane person to have some anxiety.

But I'm resolving to keep my cool about this.  I MUST....lest I fall into a dark pit.  (Been there done that, and it's no fun.)

Yes, all those above thoughts raced through my brain in the middle of the night, but it's morning now, and I am going to have a new perspective:

- God got me through this the first time, and He will again.  He provided the support we needed, when we needed it.  He opened and closed doors at the perfect time, we managed financially, and I was eventually well again.  I need to trust Him.......He is the Great Physician.
- I'm dealing with the symptoms EARLY this time, which will mean a much shorter stint on antibiotics.
- If I need to take Imovane for sleep, I WILL be able to get off that drug at the appropriate time.  I did it before, so I can do it again.
- I have helpful counsellors that I can call on to help me through this.

Sigh.

If you are the praying type, I'd sure appreciate your prayers.

Thanks for listening to my little rant today.  Blessings to you all.

Wednesday, November 21, 2012

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!

Saturday, November 10, 2012

Lyme in Australia

Lyme is everywhere.  From Canada, to Poland, to Australia.  It's just so unbelievable to read stories of people, or whole families, affected by Lyme but who are being turned away by the medical community.  And that's happening from one corner of the Earth to the other.

Honestly, does the medical community think we're making this stuff up?  Do they think I've "faked" my recovery after 17 months of antibiotics?  Just what will it take for them to BELIEVE?

I feel for Australians who have been affected by Lyme.  Our situation in Canada is only marginally better then theirs.  But at least we neighbour the U.S. where doctors who treat Lyme are accessible.  Australia is on its own, so the situation is more difficult. 

I was encouraged to see that the Australian family in the video below has found a Lyme-literate medical doctor in Australia to treat them.  They are receiving antibiotics and herbal medications.  I wonder what the rules are in Australia regarding long-term antibiotic treatments for Lyme.  In Canada, a doctor will lose his licence if he/she does not follow the protocol for Lyme treatment which permits only about a month's worth of antibiotics. 

All I can say is that we need to continue to speak up and tell our stories - in newspapers, on the radio, on blogs, on YouTube, on the internet, and on Facebook.  Wherever and whenever we can.  We need to continue to bombard them.  Eventually, things will change; I believe that.  And these social media will have played a huge role in that.

Wednesday, October 31, 2012

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!) 

Tuesday, October 09, 2012

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

Sunday, September 23, 2012

Dr. Murakami: A successful tour in southwestern Ontario

How wonderful that many of Dr. Murakami's Lyme disease presentations were well-attended.  His presentation in Kingston had 175 attendees.  Impressive!  My city only had about 60 from what I could judge, and although I was disappointed with this turn-out, I need to look at the big picture.  Hundreds of Ontarians were better educated about Lyme Disease after last week.  Thank you, Dr. Murakami!

I took notes during the presentation, and I've been wanting to post them since the presentation last week.  Our session lasted for almost 3 1/2 hours, with individuals asking questions at the end about their own situations.

Notes from Dr. Murakami's Presentation

Dr. Murakami began his presentation with a little history about his family, why he decided to pursue medicine, and how his medical career began as a GP in a small town in B.C.  It was a very interesting story which helped us to better understand who Dr. Murakami is, and why he's doing what he's doing for the Lyme community.

Here are some jot notes I took about Lyme disease:

- The IDSA is deeply entrenched in their ideas, and this is why the 2 sides are unable to talk.  The IDSA sees chronic Lyme disease as a 'syndrome', not an 'infection'.
- Yet, peer-reviewed studies have proven that it is an infection!
- To say that Lyme can be cured with 30 days of antibiotics is a lie.
- Lyme has similiarities to syphilis; they are both spirochetes.  They invade every organ of the body.
- Doctors don't recognize that it is a multi-system illness.  What do you do if you have one of those family doctors who says, "One symptom/complaint per visit"?
- Lyme is more resistant than syphilis.
- One moose in B.C. had 200 000 ticks on it!
- The nymphal (baby) stage of the tick is the size of a dot.
- The rash from a nymph bite is so small you wouldn't even notice it.
- In one study, one tick layed 10 000 eggs.
- When Lyme statistics are stated, multiply that by 10 to come up with the actual number.  This is because Lyme testing is so inaccurate.
- Lyme cysts can be frozen and later thawed and injected into mice who will develop Lyme disease.
- The increase of Lyme is due to global warming.
- B.C. was the last place in North America to get Lyme.
- Very few illnesses give you a perfectly circular rash that goes out from the point of the bite.
- After a bite, Dr. Murakami recommends 3 weeks of antibiotics to kill the spirochetes and eggs (cysts).
- The rash for Ehrlichiosis looks more like a dot, not a bulls-eye.
- Manitoba Ministry of Health is the only province that recognizes that Lyme is a 'clinical diagnosis', and that longer term antibiotics may be necessary. 
- There is a difference between what the government says and what the College of Physicians there says.
- Normally, IgM antibioties indicate an acute infection, while IgG antibodies indicate a chronic infection.  However, in chronic Lyme disease, continual re-infection keeps the IgM antibodies up beyond what we would think is the acute phase.
- The PCR culture by Advanced Labs costs $600.  This is the test that Dr. Burrascano is working on.
- President George W. Bush had a Lyme bulls-eye rash.  Dr. Murakami wonders if it has developed into neuroborreliosis due to lack of adequate treatment.
- If you have gone untreated for 5 years, you will have permanent cysts and damage.
- In IV therapy, there is a big difference in improvement depending on the length of treatment - 1 month VS. 3 months.  However, doctors here won't do 3 months.
- An LLMD in the U.S. has had favourable results in her studies of the herbs Banderol and Samento.

My questions during Q&A

Question:  If I re-do my IgM Western Blot, should I see a reduction in antibodies if I have been on treatment for a while?
Answser:  Yes, that can happen.

Question: I have read that when you're done your treatment, it is useful to pulse some doxycycline one or two days per month to keep the bacterial load down.  What do you think?
Answer:  No, this is not useful at all.  That small amount of antibiotic would have no effect on the bacteria.

Question:  How can I prevent relapse after my treatment is done?
Answer:  It all depends on the strain of borrelia you had.  Some are more resistant.  You need to do the logical things to help your immune system:  healthy eating, exercise, etc.  Don't eat sugar....all bacteria/viruses feed on sugar.

Finally, here are Dr. Murakami's thoughts which I copied from his Facebook page:

Six successful meetings in Ontario done and 2 more to go in Toronto and a special case to be presented at Mount Sinai hospital. I will enjoy the vew on the VIA rail this afternoon. Thank you all for contacts and encouragement. There were Political MP representatives, MD and NDs at the Ottawa meeting yesterday. A heart felt thanks to all those who attended and helped with donations and to all the organizers who made all this possible. I cannot get over the announcement of the NDs privileges to prescibe medications in this province (March 2013). I have given one talk at the Naturopathic Medical School in Toronto and annually at the Boucher Naturopathic School and they are all on board to learn about Lyme disease unlike my peers.  My philosophy is to teach them about evidence based medications and even educate on a one to one basis by phone.

Sunday, September 16, 2012

Don't miss this opportunity!

Dr. Murakami

If you live in Southwestern Ontario, I hope you will take the opportunity to hear Dr. Murakami's lecture as he travels across our region.  I am looking forward to it, and I hope that he may be able to answer some questions I have about end of treatment.  Here is the information on the Lyme disease Association of Ontario's website:

The LDAO is pleased to announce they will be hosting six presentations by Dr. Ernie Murakami, Canada's foremost medical expert on Lyme disease, in September 2012.

As President and Founder of the Murakami Centre for Lyme Research, Education and Assistance Society, Dr. Murakami's educational efforts continue across the nation.  He is fulfilling his dream to bring Lyme awareness to new heights and to educate the general public on the very real threat of contracting Lyme in Canada and what we need to do to change the way Lyme is viewed in our country.


The schedule of events is as follows:

Sept. 14 - Fort Erie

Sept. 15 - Burlington

Sept. 17 - London

Sept. 18 - Brampton

Sept. 20 - Kingston

Sept. 26 - Toronto

For times, locations, and maps, click here.

See you there!
For more information on Dr. Murakami and Lyme disease, visit his website Dr. E. Murakami Centre for Lyme.

Monday, August 27, 2012

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!

Monday, August 13, 2012

Managing Your Health Care

When you begin treatment for Lyme disease, you need to be an active participant.  You need to find a system to keep yourself and your information organized.  This may be very difficult to do, given the way that you feel and the mental fog that you have.  Perhaps you can find someone to help you with this.  It's very important.

When I became ill, and before I knew what was wrong with me, I had a small coil notebook that I wrote everything down in - phone calls I'd made, things I had found on the internet, doctors I had contacted, symptoms I had, etc.  I kept my loose papers in a file folder, things such as test results.  However, over time, I outgrew this method!  I had too many things to file, and I really needed a better system.

So off to Staples I went, and I bought a big binder and some dividers.


My dividers have the following headings, but you can tailor yours however you like:  History, Lab Work, Doctors' Reports, My Blog, Managing Lyme Disease, Dr. L., Miscellaneous.


The binder has filled up!  I may soon need a bigger one. 

Before you visit your LLMD for the first time, it will be very important for you to have all of your previous doctors' reports, test results, etc. available for him/her.  It is also recommended that you write out a history of your illness:  when did your symptoms start, what symptoms do you have, what doctors have you seen and when, etc.  Write it out like you were just telling the story to someone, then afterwards, you (or someone else) can summarize it in point form.

During your treatment, it will be very important for you to keep track of your symptoms, so that you can see the progress you are making, and so you can give your LLMD an accurate report when you see him/her each time.  It also helps you to figure out if you might be having any herxheimer reactions

Some people use a symptoms checklist, which is a great idea.  You can write out all of your symptoms in chart form, and rate them daily or weekly on a scale of 1 to 10.  You can find sample checklists by doing an internet search or checking out other Lyme blogs.

I chose to make jot notes on a calendar.  That was a better system for me.


Before my appointments with my LLMD, he asks me to write a paragraph about how I was feeling the past 6 weeks.  I can then just look back at my calendar and summarize what I had jotted down.  He also has me fill out a symptom checklist at his office each time.

Look at last month's jot notes:


That's right!  There are NONE!  That's because I'm feeling quite good.  I really don't have much to write about, except for tiredness and a few minor sporadic symptoms. 

I hope this information will be a help to you in learning to manage your health care. 

Friday, June 01, 2012

Dr. Joseph Burrascano

I am comforted by the fact that my health is being looked after by an LLMD such as the one shown here.  This is Dr. Joseph Burrasacno, a leading authority in Lyme disease treatment.  He gave a lecture recently at Western CT State University, on May 22, 2012.  He covers a lot of the "old" info that we are aware of, but talks about some new testing that sounds hopeful for detecting Borrelia much better.

I'm hopeful that it will just be a matter of time before all of this "intelligence" makes its way into the mainstream medical community and ultimately into the daily practice of physicians.  Members of ILADS just have to keep chipping away at the outdated IDSA guidelines with this new information.  The video and sound are of poor quality in this video, but still well worth the time to watch it.

                                                        Dr. Joseph Burrascano