Information Galore!

This is a quick post to provide you with a link to all sorts of reliable information about Lyme disease.  It is a page from lymedisease.org, an organization based in California.  Check it out.

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.
 

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).

It's June! Who hooooooo!

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

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

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

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

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

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

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

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

Blessed Be Your Name

by

Robin Mark