Have you had a tick bite? Here is IMPORTANT INFORMATION!

I am coming out of hibernation for this post because I believe it is very important to share the following information. 

Some physicians (ER, GPs) think that a ONE-TIME dose of antibiotics after a tick bite will prevent the disease.  This is FALSE, and do not allow a physician to tell you so.  It may kill off the Lyme bacteria (borrelia) in the "spirochete" form, but not the "cyst form" which can also get passed onto you by the tick.  The "cyst form" takes longer to kill.

According to ILADS (International Lyme and Associated Diseases Society), the following is appropriate treatment:

• For a tick bite with no Lyme symptoms - 3 weeks of antibiotics (doxycycline for people over the age of 8, amoxicillin for children under 8)
• For a tick bite with symptoms, such as a rash - 6 weeks of antibiotics (doxycycline for people over the age of 8, amoxicillin for children under 8)

Look it up in the ILADS treatment document in the link above and take the document to your physician.  To help you advocate for yourself, I urge you to watch this brief video below (on Facebook) which will help you arm yourself with all of the information you need to talk to your doctor.  Click this link:
https://www.facebook.com/1987511621569943/videos/2041990019455436/

Also, be very careful HOW you remove an embedded tick.  Many physicians (ER, GPs) don't know how to properly remove it without squeezing its stomach, which will cause its stomach contents to enter your body!  Here is a video to show you a method you can use to ensure that this does not happen.  It is called the Straw and Knot Method, developed by a Canadian doctor, Ernie Murakami.  Advance to 2:06 in the video.  Basically, you position a straw over the embedded tick.  Tie a thread onto a straw like you were starting to tie a shoelace.  Slide the knotted thread down the straw, over the tick's body, as close to your skin as you can get.  Slowly tighten the knot around the tick's head.  This way, you are not squeezing the stomach.  Use gentle tension to pull the tick out.  You can also use fine-tipped tweezers to pull a tick out, but be careful to grasp ONLY the head and not the body/stomach of the tick.

Put the tick in a plastic bag or small jar and have your doctor send it away for testing.  Do NOT allow your doctor to tell you to "wait and see" if you get a rash or other symptoms!  It is best to treat prophylactically (preventatively).  Three weeks of antibiotics now could save you a lifetime of chronic illness if the tick was carrying Lyme.

The Aftermath of Lyme

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

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

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

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

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

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

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

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

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

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

- I can't eat sugar or grains. 

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

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

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

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

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

Wishing you all the best!





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.

 

Another year down!

Wow, I let the summer go by without "celebrating" my Lyme anniversary.  How could I forget about that?  I started treatment on June 1, 2011.  It is now September 6, 2014.  According to my Lyme ticker on the left, I have been in treatment for 3 years, 3 months, and 5 days. 

I'm not really in active treatment right now.  Based on my symptoms, I really do feel that I'm in remission.  However, I do still take 100 mg of minocycline daily for "insurance".  I don't want to relapse AGAIN!  Even in remission, I've never felt 100%.  I hover around 85-90% most of the time in recent months.  But I'll take it!!!  I still get tired (could be from the minocycline), and I am stiff, sore, and achy (could be from some other meds I'm on), but once I get moving I'm OK.

So it was back to school for me a week ago, not as a student but as a teacher.  I've felt good enough to increase my workload a bit this year, so hopefully I won't have any regrets about that as the year progresses.  I do have to be more vigilant about doing everything I can to maintain my health:  eat well, sleep enough, and get exercise. 

Sadly, here is my report card for these this summer:

	Grade	Comment
Eating well	C	Just too much summer indulging, eating out while on vacation, ice cream treats for the kids (and therefore me), visits to Starbucks, and the list goes on!
Sleeping enough	A	Well what can I say, it was my summer holidays.  Bonus marks here!
Exercise	D	Did I mention that I hate exercise?

I think I've fallen into these bad habits because I'm quite thrilled to be a NORMAL person these days, and not a SICK person, you know?  But I do realize that moderation is the key, and I can still have my cake and eat it too if I plan more wisely and don't overindulge, as well as take the time to bake "legal" treats for myself that are low in sugar and carbs.  It can be done!

If you're trying to get well from Lyme, please DO NOT follow my awful example.  Give your body a fighting chance! 

Today is a new start!  I'm planning to follow a low-carb detox diet for the next 10 days to get myself prepped for losing weight in the coming months, and I'm planning to do some form of exercise every other day.  Perhaps I'll give you my next report card on January 1!

Here are some snapshots of things we enjoyed this summer.

Visited beautiful Niagara Falls

 

Spent an afternoon in picturesque Niagara-on-the-Lake

Visited our Parliament Buildings in Ottawa

 

 

Got lost in Gatineau Park looking for Prime Minister W. L. Mackenzie King's summer cottage

 

Pretended to be a teacher in a one-room school house at the

Canadian Museum of History in Ottawa

 

 

 

Completely blew my diet with a bowl of poutine in Québec!

If you're reading this and don't know what poutine is, it is French fries with cheese curds smothered in gravy - a Québécois creation that can now be found on menus outside of Québec.

 

 

 

Said goodbye to a truly beautiful, historical city. 

So proud to be Canadian!

 

 

What if your child gets a tick bite?

There is no question that Lyme is spreading here in Canada.  Prior to discovering the cause of my illness in 2011, I had rarely heard of Lyme disease.  This past year, however, a young member of my family has begun a battle with chronic Lyme, not unlike my own battle.  Then, the daughter of a friend developed a bulls-eye rash.  Another little girl I know had a tick bite in her hair.  And I recently learned that the relative of a fellow Lyme patient in town has had a tick bite.  I also know a few people with unexplained illnesses and I wonder about whether they might have chronic Lyme and not realize it. 

The ticks are here to stay, but so are we.  Therefore, we need to learn how to protect ourselves from bites in the first place, and if we are bitten, what we should expect in the way of treatment.

Avoid Getting Bitten

The best defence is to learn how to protect yourself and your children.  Learn how to minimize the risk while outdoors, and how to do a tick check on your body.  Click here for details.

Remove a Tick Properly

Ticks must be removed carefully to avoid transference of bacteria to your body.  You may want to head to the doctor or ER to have it removed, but you can also do it yourself to take care of the situation more quickly.  The longer the tick remains in you, the greater the likelihood of infection.

DO NOT UNDER ANY CIRCUMSTANCES pull the tick out with your fingers, pick at it, squeeze it, apply butter or oils to it, or burn it!!!  This is very dangerous because when a tick is agitated, it can regurgitate its stomach contents into the host.....YOU!  You want to ensure that the tick is removed in the safest way possible, with the head intact, so that bacteria does not enter your body.

1) You can use fine-tipped tweezers to remove it by grasping it as close to the skin as possible and pulling upward very gently.
2) A superior method is the Straw and Knot Method developed by Canadian physician Dr. Ernie Murakami.  Check out the method in this video.  (Advance to 2:05.)  (Note: The first method shown on the video would only be performed by a doctor.)

Save the tick in a jar or plastic bag and send it to the IgeneX Lab for testing.

Get Adequate Treatment

For a simple bite, some local Canadian doctors might prescribe 2-3 weeks of antibiotics, although there seems to be no standard from doctor to doctor.  Some Canadian doctors might administer antibiotics immediately, while others might tell you to wait and see if symptoms develop.  Others may want to send the tick off to a lab for testing or give you a Lyme test first.

Please be aware that any delay in treatment can be dangerous and can give the bacteria (if present) the opportunity to gain a foothold in your body, the repercussions of which can be devastating.

My American Lyme doctor would prescribe 3 weeks of antibiotics immediately for a tick bite even in the absence of any symptoms.  If symptoms have developed, such as a rash, then my LLMD would prescribe 6 weeks of antibiotics.  He would not "wait and see", or withhold treatment to wait for test results.  (Besides, testing for Lyme right after a bite is useless as the body has not had enough time to develop antibodies.)

As a parent, please do your research by checking out reliable organizations such as CanLyme, ILADS, or Treat Lyme and Associated Diseases.  If your child is bitten by a tick and has no other symptoms, ask for (or dare I say "beg", "plead", "demand") 3 full weeks of antibiotics automatically.  It is not worth the risk of the infection spreading to other organs to wait for a Lyme test or to send the tick off to the lab.  If early symptoms are present (rash, flu-like), then ask for an additional round for a total of 6 weeks.  Your Canadian doctor may be willing to do this much for you (though some may not).

If, however, your child has been sick with something mysterious for a long time and you can't figure out why despite several visits to specialists, then have him/her tested for Lyme by the IgeneX lab in California.  Then, find a Lyme-literate doctor in the U.S. who can determine if he/she might have chronic Lyme disease and treat him/her until symptoms are resolved (which may require longer term antibiotic treatment which is not yet permissible in Canada).  Many Lyme patients do not remember a tick bite or get a rash, and the development of symptoms can be delayed by months or years.  This was the case for me.

If your child has been treated in Canada for acute (early) Lyme and received one or two rounds of antibiotics, keep an eye on him/her for the next few weeks, months, even years.  If symptoms are returning, or if new symptoms are appearing, then it could be that the treatment was not long enough to eradicate the bacteria OR that your child has a co-infection in addition to the Lyme bacteria.  Ticks can pass on a whole host of bacteria which cause illnesses such as babesia and bartonella.  These co-infections require very specific antibiotics.  You will need the help of an experienced Lyme-literate doctor in the U.S.

Most Canadian doctors have not been taught the specifics of Lyme disease diagnosis and treatment, and are certainly not equipped to recognize and diagnose chronic Lyme disease and the myriad of symptoms it produces once it goes beyond the acute stage.  Lyme is the "great imitator" and can mimic many other illnesses, sending the patient on a wild goose chase from specialist to specialist.  Infectious disease doctors seem to be very set in their ways with regard to Lyme.  Check out my Lyme friend's recent experience here and you might have a better understanding about what a visit to a specialist may be like.

Additional Information

Here is an excellent report on ABC News entitled Beyond the Headlines: Lyme Disease.  Several victims are featured, and they shed a lot of light on what it is like to have Lyme, and how one must navigate through the medical system on one's own to find the help necessary.  Click the link below.

http://abc7news.com/242626/

 

Enjoy your summer, but remember to protect yourself and your children!

Disclaimer:  This post is for informational purposes only and is based on my personal opinion and personal experience.  Consult a physician for diagnosis and treatment options.  I urge you to do your own research, be an informed patient, and be involved in decisions regarding your treatment.
 

HealClick - Find help on the internet

I'm not sure where I'd be today if it hadn't been for the internet.  The information I gathered from the web was critical to my self-diagnosis of Lyme disease.

Whatever illness you have, or think you might have, finding possible answers to medical problems can be just a click away.  However, the information you google isn't always reliable.  It's important to check out the source of the articles you read, and the credibility of the author.

In the case of Lyme, the internet is a valuable resource because our GPs just don't have all that much information to give us.  Most doctors are not well versed in this illness, and most are unable to make a diagnosis despite the symptoms. 

Through my horrible Lyme brain fog, I sat at my computer in the early months of 2011 and researched the symptoms of Lyme, listened to an interview by LLMD Dr. Maureen McShane, found out how to send my blood to IgeneX, learned about the controversy surrounding Lyme, found a Lyme support group in a neighbouring state which led me to the LLMD I see today.  How could all of this have happened without the internet?  Certainly no one around here in Canada was guiding me in the right direction!

I was contacted recently by an individual involved in a new internet project called HealClick.  I have not had the opportunity to explore the website, but have read their information and watched their video.  Basically, this is a website that helps people network with others who are experiencing similar symptoms, and to find help for their illnesses.  This could be a big help to people with Lyme disease.

You can check it out at www.HealClick.com and watch their video here.  They are launching the site on Tuesday, January 14 at 8:00 a.m.
 
Here is some information that was provided to me about HealClick:

• HealClick is completely free and will always be.
• We are a site created for patients by patients. Our co-founders tried to find a site that filled their needs for social support and medical information sharing. After they couldn't find what they were looking for they decided to just make it themselves. 
• Our site is for patients only.  We don't recruit Doctors or researchers because we want to hear directly from patients about what works for them and what doesn't.
• Matching is what sets us apart. Our site tells gives you a percentage match to every other member. This way you know at a glance how similar you are with regards to your diagnosis, symptoms, and even treatments.
• Start any kind of topic. If you have a question or an experience to share, we want to hear it.
• Review any type of treatment.  Tell us about your experience, and compare your results with others.
• Our site offers unique social support. The founders, writers, and community managers are all patients.We foster a positive and caring atmosphere where people can share lighthearted humor and successes as well as support each other through hard times and setbacks.  
• The medical information that our members provide won't go to waste; it will be used to fuel new research! We will share the anonymized data with researchers that we believe have patients' best interests in mind. More information on how we de-identify data here.
• Privacy is incredibly important to us. Not just with regard to data for research, but with the entire site. Usernames, pictures, and profiles will never be made available to the public.

Update on the relapse

Here I go again.  Sigh......

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

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

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

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

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

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

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

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

Many blessings!

Light at the End of the Tunnel

This is how I felt today as I finished up my appointment with my LLMD.  Here I am, nearing the end of this long, dark tunnel called Lyme, ready to emerge into the beautiful light of day!  The end of treatment is nearing.  It's so close I can see it! 

I've been feeling exceptionally well for the past month, with just minor, tolerable symptoms here and there.  The fatigue has definitely improved, and I've been able to go about my day without too much difficulty.  I'm headed back to work as a teacher in one week!  That's exciting!

Here are some questions I asked my LLMD at this appointment, and these are the answers he gave me.

1. What if all of my symptoms don't ever go away completely?  How will we determine the right time to end treatment?
Answer:  It's sometimes hard to tell if certain remaining symptoms are caused by the Lyme or by the medications themselves.  As long as I continue to improve, we want to continue to push the treatment.  But if improvement stops, and I'm feeling quite well, then perhaps it's time to try to go off of the medications and see how I do.

2. When do you think I'll be done treatment?
Answer:  He thinks I should probably be able to go off all medications around the new year.  He doesn't like to stop antibiotics for teachers at the start of the school year (due to the stress of the situation.....and we all know that Lyme does not react well to stress.)

3. Can we begin to space out the appointments a bit more?
Answer:  Yes, we are at a point where we can go a couple of months, and perhaps even phone consults as long as I'm feeling well day to day.  (Wow....was I glad to hear that!  It sure would be a great cost saving to have just a phone consult.  No 3-hour drive to and from, no hotel expense, no restaurant meals.  Sign me up!)

4. What do you think of the new blood test - the Borrelia culture by Advanced Labs?
Answer:  The test is not perfected yet, and is expensive at $600.  It's not worth it.  (Nor does he feel that the CD57 is worth it, in his clinical experience.  The CD57 numbers just don't always correlate to how a patient feels physically.  He prefers to go by symptoms, and how you're feeling to determine end of treatment.)

5. When I finish up the antibiotics, could I go on herbal anti-microbials to help keep me in remission, such as Banderol and Samento?
Answer:  Yes, those herbals help some people in the remission stage; they're not as good during the intensive treatment though.  They can be purchased online and aren't too expensive.

6. Will we attack the cyst form of Borrelia again with Flagyl or grapefruit seed extract?
Answer:  Since my liver enzymes were elevated on the Flagyl last time, we won't use that one again.  I can do grapefruit seed extract, but we'll leave that for a while, since it can make some patients feel ill (....and I'm going back to work, so the timing isn't right.)  With some patients, he never prescribes Flagyl at all, and they do just fine.  (It depends on the person and their symptoms.)

Wow......it goes to show that there is no real recipe for treating Lyme disease.  It's an art.  LLMDs evaluate your symptoms carefully, and choose the antibiotics that they feel will best address your particular situation.  Sometimes it's trial and error.

I'm grateful for my LLMD, for his experience and guidance.  I'm grateful that I'm being cared for by someone who has treated over  3 000 Lyme patients!

Thank you so much, Dr. L, for caring for your patients, for going out on a limb for us, and for continuing to learn through your practice and conferences, in order to provide the best care for us.

You truly saved my life.  May God bless you!

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!

Lyme in Norway

It has been one year now since my Lyme disease diagnosis.  It was great to feel validated, at last.  Two doctors, in two different U.S. states, affirmed what I had been strongly suspecting for months - that I had a borrelia burgdorferi infection.  My treatment could finally begin!  But we had to prepare ourselves for what we would be facing in the coming year. 

Going to doctor's appointments that are 3 hours from my home, that require a hotel stay, that require arranging childcare for the kids, and that require payment for services has been an inconvenience, I'd say.  Taking antibiotics long-term has been a concern, despite the fact that I understand the need for it.  Having a physician who was so far away was a worry, as well, in case something went wrong. 

To put this into perspective, I remind myself often that there are so many people who travel much farther than me to receive treatment, and many people who can't find ANY care at all for their Lyme disease.  Some people suffer for years before they are diagnosed, whereas I was sick for only 5 months before starting treatment.  I really am grateful for the care I have, despite the inconveniences.  Sometimes I stumble across a video that reminds me of these things.  Here is a news report of a man from Norway who could not find the proper diagnosis and care in his country. 

I hope that one day these stories will be history, and that Lyme disease will be properly recognized in the medical community here, and around the world.

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