Category Archives: Lyme Disease

Katie Couric is asking for your Lyme stories.

Katie Couric’s talk show, “Katie,” seeks people with Lyme disease to tell their stories on a future episode.

She asks: Have you had, or do you currently have Lyme disease?

What were/are your symptoms? What do most people misunderstand about Lyme? Share your story with us and you may be featured on an upcoming episode of Katie. – See more at: http://lymedisease.org/news/touchedbylyme/couric-lyme-stories.html#sthash.34xx0qaD.dpuf
I couldn’t really answer all of these questions– It would take years, ya know? But this is what I submitted. I hope that even though I most likely will not be on her show, it gave me another opportunity to share my experience with whoever reads it, and now you too.

A few years ago, I was sitting with a therapist, discussing what it is like to care for  a family that all has Lyme Disease and co-infections. She asked if I had ever given myself time to mourn. I wondered why she would ask that. She said that I had lost a life, a marriage, a family-life, one that I had expected to have, instead of one that is predominated by illness, medications, medical debt. She said that not only am I a person with a chronic illness, but I am now the caregiver to three other chronically ill people; my husband, my son and my daughter.
I really haven’t given myself time to mourn, and I don’t think that I can actually grasp what outsiders see me and my family go through on a daily basis. I think it is because I am an optimist by nature (albeit one wracked with anxiety!!) as well as being a fighter.
A very quick version of our Lyme Story  is that my husband was most likely infected in the 1970’s. He was un/misdiagnosed until 2007. We met in 1990 and he passed it along to me, and then I passed it along to my two children, congenitally. He bacame very sick in 2003-4 and was  diagnosed with a variety of psychiatric disorders.
I knew that he didn’t just become Bipolar overnight so as I researched more, I realized that Lyme disease was most likely the actual disorder. He began seeing a fantastic lyme literate doctor who talked to us about the likelihood of me being infected as well. When I tested positive, we had out kids tested. I sobbed as the doctor gave us the results– both of my kids were also very ill.
That was in 2008 and we are still not better. My husband is completely disabled by this and is basically housebound. My kids struggle with being chronically ill teenagers. As for me, its a daily obstacle course of meds (I color code the bottles so everyone knows how many pills to take in the morning and evening), fights with insurance coverage (We paid out of pocket for 6 months of IV abx for my husband until we couldn’t afford to put any more on our credit cards), doctors visits (also not covered by insurance), tracking symptoms, on top of regular life and all while being ill.
But like I said, I am fighter and I will do everything possible to make my family healthy and whole again. I try to spread the word about Lyme disease and my kids and I attended the Lyme Disease Protest and Rally at Union Square last May.
Things have to change in regards to Lyme disease treatment and I plan to make my voice heard.
Thank you!

PSA: Ticks are exceptionally bad this year.

Yes. Ticks are exceptionally bad this year. Full Stop.

And yes. Ticks are exceptionally bad each and every year, but this one seems to be getting off to a quick and hard start. A few weeks ago, I took my dog into the vet’s for her Lyme vaccine. The vet reminded me that the vaccine is not 100% effective and to make sure we use Frontline year round. She also said to be very careful, that they have been removing ticks from dogs at an alarming rate and have been doing so non-stop since January. Not only have I been hearing about ticks being on dogs, but I am  being told by family and friends that they have been either been bitten or had one crawling on them many times over the last week or so. My dad just called me to tell me he has a tick attached and is off to the doctor to have it removed and tested. Not much can scare and worry me like a tick bite can.

Since it is just the beginning of the Spring/Summer season (it’s been darn cold here in NJ considering it is May!)I feel compelled to share some PSA-type information.

The best advice I can give to someone who has been bitten is to SAVE the tick!! Remove it carefully without squeezing or pinching the tick.  There are Labs all over the country that you can send ticks to to be tested to see what infections that carry. You can Google Tick Testing Lab, or here is a link to one that I found: Tick Testing.   The prices might seem high, with the cost averaging $60-$75, but in my experience, that is much less expensive then all of the testing and treatment you might need otherwise. Once you know what diseases the tick carries you will be able to more accurately plan treatment.

The next best bit of advice is to ask for a prophylactic dose of antibiotics, usually doxycycline, from your doctor. Some doctors are willing to prescribe, others might need a bit more coaxing. It is very important keep in mind that treatment of Early Lyme is usually quite easy and successful. It isn’t until the disease become disseminated and chronic that you end up in the hell that my family is in and has been in. Most Lyme literate people believe that enough antibiotics to extend through a full life-cycle of the Borellia bacteria is needed (28 days). If the doctor only prescribes 2 weeks, as is common, see if you can get a refill for the additional 2 weeks. (Disclaimer: I am obviously not a doctor so research and discuss this with your doctor, but don’t let him/her blow you off.) Many people are hesitant to take antibiotics unless truly medically necessary, but again, 4-6 weeks of antibiotics is a better scenario than the 5+ years each of us in my family has done. And we are not done yet.

While not all ticks are infected with Lyme and other co-infections, deer ticks are not the only ticks that carry these bacteria and parasites. Read Know Your Tick Facts for more information.  Common wisdom says that a tick must be attached between 24-48 hours before bacteria is transmitted to the person. However there is evidence that the bacteria is present in the tick’s saliva and can be passed almost immediately to you.

Obviously, prevention is critical as well, because  most  people don’t remember ever getting bitten and very few people actually get a bulls-eye rash. (If you are one of the lucky ones to get a bulls-eye, take a photo of it, with a coin next to it to show its size. Most rashes fade by the time you get to a doctor and the rash is one of the few ways to be “CDC Positive,” and to  get coverage by your insurance company for treatment.”) Always use bug spray. I used to be a all-natural type, and made my own bug spray with essential oils, but now it is “Give me DEET!” There are many different sprays using different chemicals so use what best fits your philosophy. Permethrin is excellent for spraying clothing. I spray a set of gardening clothes that I will use just for yard work. I buy Permethrin from Amazon.

Tick checks are also imperative and ticks gravitate to warm, moist area, like neck and hair, armpits and groin. Keep in mind that ticks– nymphs and deer ticks are tiny- the size of a poppy seed. I always keep my hair pulled back tight when I am outside and will wear a hat sometimes too. Experts say that it is best to wear long sleeves and long pants but when I am doing yard work, I feel that I can sense something on my skin better than if I were wearing long pants. But that is just me.
I know that there is so much more info to share but I can’t think of it all off of the top of my head any more. My brain has decided to shut down, not an uncommon occurrence for anyone with Lyme! The only last bit that I need to share if you get bitten and/or have Lyme symptoms,  is to look for a Lyme Literate Doctor and to get tested at reputable lab such as IGeniX or MDL.

Leave me a comment if you have any specific questions! And please, be careful out there– while it is bad, we cannot let those damn bug win!

 

Aside

Press Release May 10, 2013 New Jersey Patients Rally to Raise Awareness of Lyme Disease, challenge CDC Treatment Guideline Many New Jersey people suffer unnecessarily for years with Chronic Lyme disease. Lyme disease patients from all corners of New Jersey … Continue reading

Update

I have gotten a few messages and requests for an update on how my family is doing with Lyme. I have updates my About Me page is anyone is interested.

 

Dusting, no– Scraping– the dirt off of this Blog.

I guess it is about time. Its only been, oh way too many months to count since the last time I posted. In some ways a lot has changed, in others. Yeah. Not so much.

The family is still fighting the Lyme fight. Except when I posted last, I had one of the 4 of us doing ok. Since then, Caitlyn has had a total relapse.  Scott is holding his own, symptom-wise but his having  some issues with high HHV6 and Lyme titers, which means that his immune system is still struggling. I have been (finally) diagnosed with Babesia, so now I don’t feel so left out. The rest of the family has it and now I get to join the Babs-Club.  Like I wanted to be in that one as much as I want to be in the Lymie Club. *eye roll*

But, it is what it is and as I say, I am a Lyme Warrior, not by choice but because I have no choice . The kids and I are doing our Lyme Warrior Bit on May 10th as part of the Worldwide Lyme Disease Protest.

I am looking forward to getting out there and helping the Lyme Community to be seen and heard. (Ya got that CDC????? IDSA??????)

Aside from Lyme being the core of my life, I am still a scrapping-fiend. It is my SANITY!!!! Oscraps has been my life-line and Therapy Session for a long long time. And I added in a new site to hang out at– MScraps. Both sites have some awesome  sales coming up for iNSD this weekend. Mscraps is also having a Blog Hop that is seriously huge and one of the stops is here!. (its is also a big reason I wanted to get this blog cleaned up a bit. Have to get ready for company!)

Life is hectic in May for me so I can’t promise that this blog is going to published as much as I would like, but this is a start. If I do nothing else, I would like to update the Lyme Journey as I have gotten a lot of comments to do so.

Hope that all of you are great and thanks for ignoring the dust-mice! xoxo

Lyme= HOPE!!

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There really is hope for those of use with Chronic Lyme, As of right now, my family has a 75% success rate!!! Yesterday was my kids’ LLMD (Lyme-Literate Medical Doctor) appointment. They have been seeing Dr. B for4 1/2 years now. But yes, there is a light at the end of the tunnel!   Both kids were diagnosed in 2008 with Late Stage (most likely congenital) Lyme Disease, Bartonella, Babesia and Ehrlichia. Four and half years of meds, supplements, blood draws and doctors appointments with  2 hours of driving each way. The last time they saw Dr B was in June and they had reported little to no symptoms. We felt that the next step was to put them on a lose maintenance dose of minocycline and see  how  they did.  Now in October, they are symptom-free and feeling pretty darn good about it! They are have had their minocycline doses reduced even further and will be going back in another four months. If they stay symptom free, we get to say good bye to antibiotics!

I have to say, its kinda scary to think about them not being on any meds or treatment plans.In some ways the abx have felt like a safety net; if they got bit by a tick, they would have some protection. I guess I am going to be a bit neurotic about  tick checks again.

That makes 3 out of 4 family members who can say that they are feeling better then they have in a long time and that Lyme is NOT going to get the best of them. That gives me hope- hope that Gary will someday will join the ranks of us who have Hope after Lyme.

Lyme Takes another Victim.

Her name is Jennifer and she was a long-time Lyme sufferer. She passed away in early June. Her last post on a Lyme Disease forum expressed how much she had fought against this disease, against the insurance companies, against people who did not understand.  She spoke of being overwhelmed and depressed from illness and from fighting. And now she is gone.

I do not want to speculate how she died. Yet however she died, whether it was either directly or indirectly from Lyme, she left behind family and friends who loved and lost due to this debilitating disease. It speaks volumes to me that her family has asked for donations to the International Lyme and Associated Diseases Society (ILADS.org), in lieu of flowers. Even after she is gone, she still fights for Lyme Awareness.

RIP Jennifer, may you be in a place without pain.