Lyme Disease Awareness Month 2018

May is Lyme Disease Awareness Month.   I want everyone to remember that this is not just an epidemic of the East Coast and Upper Midwest.  Borrelia and its multiple co-infections (e.g. Babesia, Bartonella, Erlichia, Mycoplasma) are alive and kicking all around the U.S. including our very own Southern California!  My daughter had active infections with all 5!!  If you are skeptical of this, check out this sign from the trailhead in Placerita Canyon in the County of Los Angeles!

lyme disease post placerita

Let my daughter serve as a reminder!  Please take 11 minutes out of your day to watch her video so you can be aware of the symptoms and the damage it can cause.  On behalf of our daughter, we thank you for watching and wish you all good health!!

http://www.kizoa.com/Movie-Video-Slideshow-Maker/d113437837kP496489927o2l1/sophie-lyme-disease

 Update:  Making Strides!

Time is just flying by!  My daughter is graduating from 6th grade in a little over a month, which means she will be starting junior high!  I’m so proud of her because she joined the local track team and she did awesome!  This is just such a huge stride because, when you’re in that dark and lonely hole of Lyme , Co-Infections and PANDAS, you feel like it’s never going to end and nobody truly understands unless they have been through it themselves–that’s part of the hardship of these illnesses (and can be comparable to the struggles of other autoimmune diseases).  Even though my daughter seems born to be a runner, she tells me that she hates it- ha!  So we had her finish up the season and we will find something else for her to try.  I’m just so happy she pushed through to the end.

Storm track

One of the big strides this past month is that we got to remove the Doxycycline from her daily regimen- woohoo!!  She has been on antibiotics for nearly two years (not to mention the Doxy made her sunburn so easily) so that was a welcome change!  She seems to be doing okay without it.  We ended up ordering the anti-parasitic Nizonide (generic for Alinia) on a website called All Day Chemist as recommended by her specialist.  I’m not gonna lie — it’s scary to order drugs online but it is completely legal and has to be prescribed before you can order.  I trust her specialist and she assured me it was safe.  We had to order it because our insurance will no longer cover the Alinia and it is $300 a month (and I believe that’s with a discount)!  When she stopped taking that drug her headaches and shooting pains returned.  Plus she still had a recent positive result for Babesia so it makes sense.

Her most recent labs still indicate high ANA’s (Anti-Nuclear Antibodies) at 1:160 with a speckled pattern, which are typically indicative of an autoimmune disease.  This (along with all of her symptoms) is what got her the misdiagnosis of Systemic Lupus Erythematosus back in 2015 (but the tests back then were extremely elevated at 1:1260 so at least it’s a lot lower now).   Her specialist believes it is just related to her multiple infections and inflammation.  PANDAS is an autoimmune disorder too so I often wonder if that could have something to do with it….but I’m not exactly sure if that’s how it works because I have not heard of too many other kids with PANDAS who have high ANA’s.  My daughter also  now is deficient in zinc so we have added that to her supplements (along with energizing iron for deficiency in ferritin, vitamin D, and Vitamins B-12 and a B-Complex supplement).

Here’s something new I learned this month:  if  you can’t find a lab to do a test kit (MDL and Igenex for example), you can actually have a phlebotomist come to your house and draw blood.  It cost an arm and a leg but you gotta do what you gotta do…So $145 later we are waiting for results to see if my daughter is lyme and co-infections free!

We continue to pay out-of-pocket for all of her specialist appointments,  (every 6 to 8 weeks at the least $375 a pop), much of her testing, plus all of her supplements, herbal tinctures, etc. We calculate that it’s between $500 to $600 a month to continue this way as we have for about a year and a half now.  I am very grateful that she is healing and I would give anything to have my daughter well but it’s just a truth that I think people should know.  Due to the “Lyme Wars,” mainstream medicine and insurance companies will not recognize and treat Lyme Disease effectively.  PANDAS, unfortunately, is in the same boat.

If you have read this far, thank you!  I appreciate your interest and hope that this information will do just what I hope:  INFORM!  If you have been bitten by a tick carefully remove the whole thing and place in a container.  You can have it tested for lyme and co-infections for free.  For more information about Lyme Disease and free tick testing go to www.lymedisease.org.  If you have been in a tick area in the past several weeks and have developed a flu-like illness followed by migratory joint pain, fatigue, malaise, swollen joints, headaches, fever or rash, please see a functional medicine practitioner or a Lyme Literate MD.  The nymph ticks are as small as a poppy seed and can go unnoticed, especially because they seek out hidden areas (e.g. scalp, nape of neck, armpits).  You know yourself and your loved ones best — don’t let anybody tell you it’s nothing or it’s all in your head!

tiny ticks california

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4 thoughts on “Lyme Disease Awareness Month 2018

  1. Can I post this video link in some PANDAS Facebook groups? It is so well done and represents so many of our stories. It was gut wrenching to watch but I am so happy to see she is thriving!

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