Come out to our October LymieMoms Social Event! 10/11/15

1888484_10152390923879155_2053769405_n(1) As I’ve mentioned before on other posts. I started an online Support Group for Mom’s with Lyme Disease called Lymie Moms Unite, who’s kids are suffering from it, as well as for those who are pregnant or looking to start a family and in need of support and friendship. Many of the Mothers in my online Facebook group are young Mother’s who have sick kids and looking for answers and support. Others are there for information. We also have Veteran Lymie Moms who are there to help those who are now going though their own journey. Its amazing some of the friendships these women have made with each other already and even myself have. Im very big on a drama free and luckily we’ve never had that either. I’ve heard from some of the Moms telling me they feel safe in this group, which was the approach I wanted when I started this. A no judgement group where Mom’s can vent if needed, come together and also support one another without bashing one another for their own choices in their journey to have a family and the kind of treatment they do. I want to make it clear too because I’ve had others ask. This group is not just for the young Mother’s out there. We welcome Mother’s with grown children as well as Grandmother’s who may have a grandchild who as sick as well.

Recently, this past summer, I had an idea to get local Mom’s together each month, or every other to meet in person. That idea turned into the LymieMoms Social Group of PA/NJ/DE. We had our first meeting with 4 of us there at a Panera Bread in Montgomery County, PA. It turned out wonderful, we had lunch, shared our stories and advice with each other. I realized soon it very much something that was needed and was happy that I started it. The plan is to change locations every time which is what I’ve been doing so far and its turned out great! I only wish I could travel to each state and county meeting more Mother’s out there, but sadly I am unable to do that I am only one person and have a family of my own. My great hope is that we can do this wherever the Social part of LymieMoms is needed. Therefore I’m asking if any of you are interested in being a LymieMoms Host in your State and County please let me know by emailing me at The volunteer job does not come with a huge responsibility. You would just have to pick a place each month or every other to have lunch, dinner, or coffee then invite people. The key is to get together without spending too much money. There is no money that you have to put up front. Its just a matter of making a commitment to keep the group going. I also doing mind helping out with the invites if  needed through social media.

I do hope to see some of you local Ladies, Moms, soon to be, etc. in the PA area at our next meeting which is this Sunday, October 11th @1-3:30pm at the Wegmans Pub in King Of Prussia, PA. Please RSVP at the link below on Facebook and I hope to see you there!


LymieMoms Social Club of PA/NJ/DE (Link to Group)

OCTOBER LymieMoms Social Event 10/11/15 (RSVP Here)

Follow Us Here! LymieMomsUnite Instagram

Lymie Moms Unite (Facebook Online Support)

Tick Prevention! Please read and share to protect yourself and loved ones during Tick season!


I’ve already received 4 messages from people just in this last week regarding Tick bites. PLEASE, PLEASE remember right now the nymph (babies) ticks are out!! So when you are outside whether you are hiking, playing in the yard, gardening, camping or even at a local park do a tick check when you come home. Here are some tips I would suggest too…these are cheap products that can help.

1. Wear some kind of hat
2. Wear light colored clothing so that you can see the ticks
3. Cover any or all exposed areas such as your ankles, arms, & legs. Ticks love the warmer spots like your Ears, armpits, groin, etc. I know it can be hot to wear long clothes in the spring/summer so if you prefer there are products that help protect from ticks such as…

A. Permethrin Spray, this is good through 6 washes of clothing-

B. Spray with DEET to apply to the skin-

C. Natural spray is also good for kids and if you don’t want the chemicals on your skin is- Repel Insect Spray

D. For your lawn there are many different things you can do. Remember ticks love the to hang by the edges of your yard and walking paths. They HATE the Sun but LOVE the shade so putting things like your kids swing set in the shade isn’t the best idea. Here are a few products to help-

E. Don’t forget about your pets! Use a pet product on them to help prevent ticks as well. Remember to check them when they come inside and one of the best things I can tell you as well. Do not allow them to sleep in bed with you at night. I’ve had many people with stories of ticks transferring from their pets onto them-

F. When Hunting there is a Tick prevention suit and clothing you can wear. In fact my Father In-law uses one and says it works great!-

Reputable Lyme Disease Info-

Have a fun this Spring/Summer but please be safe! Share this post and if any questions feel free to contact me 


2/05/2010- Babesiosis; a quiet yet deadly concern

Written by Joyce Johnson

TRIPLE THREAT – Ticks can carry not only Lyme disease but also two other threats, including babesiosis. Tick-borne disease doesn’t share the ‘Lyme-light’ It’s an apparent medical dilemma – a disease whose victims may suffer vague symptoms for weeks or months as physicians ponder the cause, sometimes coming to the right diagnosis just hours too late to save the patient. The affliction is babesiosis, yet another disease passed on to humans by a deer tick and recognized for decades without attaining the notoriety of two other life-threatening diseases carried by the same tick, Lyme and anaplasmosis (also known as ehrlichiosis.) If you haven’t heard of babesiosis, you have lots of company. The majority of those who were asked by this reporter if they were familiar with the disease indicated they had never heard of it. A few others said they knew someone who had had it but little else. However, those interviewed who had had close contact with the disease were surprisingly eager to talk about their experiences, some of which were harrowing tales.

 That included two people whose close relatives had suffered and died just hours after a diagnosis of babesiosis was reached in a hospital emergency room, too late to save them. Several others counted themselves among the “lucky” because either they were examined by a doctor who admitted to not know the cause of the symptoms which often resemble those of the flu, and referred them to someone who did. Or they were examined at a facility that sometimes orders simultaneous tests for three of the known tick-borne diseases. That procedure may have saved lives this past summer when at least four cases of babesiosis were diagnosed promptly on the Lower Cape. For background to the uninitiated, babesiosis is a disease of the red blood cells where parasites, similar to cases of malaria, attempt to destroy those cells. Victims most at risk when they contract babesiosis are the elderly and those at any age with chronic diseases or physical impairments that could compromise recovery. Also at risk are those who ignore chronic symptoms when the first or second physician they consult fails to diagnose their condition. Fortunately, the spleen, one of whose duties is to filter red blood cells, can assist in recovery despite a failed diagnosis, especially in younger victims who do not have compromising health conditions.

A 77-year-old who had retired to Brewster and had no potentially compromising physical issues sought out a heart specialist when he was having breathing problems, weakness and loss of weight, three of the many possible symptoms for babesiosis. He passed a set of tests for heart disease and was told he had no problems in that area. When the symptoms continued, he consulted his regular physician who thought he might have pneumonia. Once again no health problems were identified. These efforts to understand what was wrong continued over a period of five or six weeks, his wife said. Neither doctor had ordered a blood test. His condition continued to deteriorate until finally his wife took him to the emergency room at Cape Cod Hospital. The doctor ordered a blood test and it showed he had an unusually high count of white blood cells caused by babesia parasites. The diagnosis, even after he was given multiple transfusions, was too late and he passed away.

Another sad example is a relatively young person from Orleans who died from babesiosis. He was 53 and suffering from Crohn’s Disease when he was bitten by an infected tick. His mother said he misconstrued his symptoms as an attack of Crohn’s so he did not call a physician. When his mother checked on him she became very concerned and had him transported to a hospital. A blood test confirmed he had babesiosis, but the parasites had done their job well and he died hours later.

 Survivors Tell Their Stories Happily, other Cape Cod residents diagnosed with babesiosis have more encouraging tales to tell. Several victims of the disease in the Wellfleet/Provincetown area last summer were diagnosed promptly because their physicians ordered the composite test for tick-borne diseases and babesiosis was identified. All have expressed concern and impatience at their slow but steady recovery after taking medication developed to replace quinine (which at one time was the only known treatment but could have harmful side effects.)

One victim, who was diagnosed with Lyme at the same time as babesiosis, continues to have persistent breathing problems and other symptoms which she attributes to tick-related disease and is seeking other types of treatment. For another Wellfleet victim, diagnosis was elusive. She said in the summer of 2008 she had been feeling vaguely ill for months, which can be typical of babesiosis, whose symptoms may be so mild it is not recognized. When her situation finally became acute she was sent by ambulance to Beth Israel Hospital in Boston, where babesiosis was diagnosed. She spent at least eight days in the hospital while transfusions were administered to counteract anemia caused by the red blood cell parasites. She could be termed one of the “lucky” ones as she is in her 80s and recovery is expected to be more difficult, or, at worst, questionable, for the elderly.

Babesiosis for an Orleans resident came on slyly, catching her unawares as she drove to the Hyannis office of the non-profit organization where she volunteers. Dozing off as she drove on Route 6, she was awakened by driving over the rough edge of the highway surface just as she was about to run off the road. Thinking only that it was a case of overtiredness from not feeling well recently, she continued on to the office, where a fellow volunteer, startled by her appearance, asked her what was the matter. She found she had a temperature of 104 degrees. A visit to her doctor’s office resulted in being given a prescription for an antibiotic and the admonition to go to the emergency room at Cape Cod Hospital the next morning if she did not feel better. She took his advice. A blood test revealed she had babesiosis. She received at least three transfusions over a week’s time. “They gave me another one just as I was dismissed,” she said, with the advice it might take at least six months for her blood to regain its balance and she would start feeling “normal.” She said the timing was right on. But a South Chatham woman who was in her 50s when she contracted babesiosis said it took her over 10 months to fully recover. Her symptoms had included fever and an incredible headache, enough for her physician to insist that she go to the hospital for blood tests, fearing meningitis. The diagnosis was babesiosis.

 The frustration of victims of tick-borne diseases – from a creature that is so small in the “nymph” stage it can hardly be seen, and sometimes can be scratched off without any awareness that the victim has been bitten – is paramount, as those interviewed were eager to impart. They are dismayed they have had to make real life changes to avoid exposure to ticks. For instance, gardening and casual walks in the woods and dunes which have been so important to their lives must now be done with concern for their health, and conscious steps for self protection. A Growing Threat In the spring, like any newborn, the nymphs are voraciously hungry, laying in wait on the tips of leaves, moist grasses (they require a moist habitat), in wood piles and bushes, for a warm-blooded animal or person to pass by close enough to transfer themselves to it, the victim unaware and seemingly powerless to protect itself. As the nymph stage progresses in June from the size of a poppy seed to eventually the size of an immature wood tick, its characteristic reddish brown body is more identifiable, but it is still so small that it is possible to be unaware of its presence, usually in the more protected and moist parts of the body — behind the knees, ears, base of neck and the like. Two other deer tick-borne diseases are more familiar to the general public than babesiosis – anaplasmosis, which involves parasites of the white blood cells (also known as ehrlichiosis), and Lyme disease, named after the town in Connecticut where it was first recognized in the 1970s. The strange symptoms of Lyme which many doctors early on were finding difficult to pinpoint, raised the concern of parents and friends as they saw their loved ones and associates in pain and signs of progressive loss of health. Their concerns slowly triggered the long process of raising consciousness about tick-related diseases and their troubling, potentially long lasting and threatening elements.

The deer tick is not alone in its transgressions against humans. The wood tick (larger than the deer tick but with white graphitic-like marks on its back) carries yet another serious disease, Rocky Mountain Spotted Fever, also life threatening if not recognized and treated promptly. Ironically, one could hardly call the wood tick preferable to a deer tick, but at least because of its size – about twice that of a deer tick – it can usually be felt crawling on your skin and removed before it imbeds itself. (An imbedded tick will not transfer its diseases if it is removed up to 24 hours after it became imbedded, according to some reports.) The Cape Cod Cooperative Extension in Barnstable has taken a stand against ticks on Cape Cod and the Islands and is attempting to rid the area of them, using knowledge of the deer tick’s life cycle – from deer to field mice to humans. If the cycle can be broken the threat will be lessened. The question is how to find the funds to accomplish such a task. One such attempt that was state funded included setting up feeders for deer in the woods where a deer is lured to a feeder placed so that it rubs against four posts on which pesticides had been deposited. If successful, the pesticides kill the ticks. But the failing economy caused the funds for the program to be cut. David Simser of the Extension Service said he has no idea when and if such programs will be refunded, although he hopes some will be coming forth from the Environmental Protection Agency. “I’ve got my fingers crossed,” Simser said.

So protection from ticks, at least for the time being, apparently mostly falls to the residents of the area to assist by appropriate management of their properties, as well as more intensive education of the public by local organizations. County Leads Education, Prevention Campaign The Cape and Islands Tick Disease Task Force, founded over 10 years ago by Truro biologist Brenda Boleyn, provides information and seminars to keep doctors and other professionals updated on tick issues, as well as initiatives in alerting the public.

The extension service has put out a booklet, which is available by contacting it at It contains advice for reducing the number of deer ticks, for instance, by clearing property borders of low lying limbs, leaves and grass. It lists the safe uses of pesticides and tips for disposal of clothing when working outside or walking in the country. There are suggestions for plantings and other ways to make gardens less attractive to deer, mice and other animals that might carry babesia parasites. The extension service in 2007 compiled data from a survey of deer ticks on the Cape (Sandwich to Yarmouth as well as the Islands) and the diseases they carry. In that report, an average of 47 percent of the ticks tested carried Lyme disease. More alarming, an average of 5 percent of the ticks in three of the towns where testing took place – Harwich, Yarmouth and on Martha’s Vineyard – carried all three of the diseases, Lyme, babesiosis and anaplasmosis. Funding for testing of the Lower Cape has not been secured. Simser said more recent figures indicate there were 25 confirmed cases of babesiosis in Barnstable County in 2008 and a total of 51 cases for the combined counties of Barnstable, Dukes and Nantucket, or an increase of 34 percent of cases in 2008 over those in 2007. He said the current state budget does not include tick testing. Education, be it through the extension service or other means, includes understanding of tick habitats so they can be avoided, such as wet, swampy areas, wood piles that may contain damp rot, as well as early morning dew-laden grasses, along the shore or in woods and open fields. Also pertinent is that the deer tick, unlike the wood tick, is present year round, with the potential for transmitting diseases when temperatures are above 30 degree. Clothing can also help protect an individual. White socks drawn up over light-colored trousers will make ticks more visible. Throwing clothing into a dryer for 20 to 30 minutes could help get rid of ticks missed visually. Unfortunately, a hot shower or bath may annoy but not kill ticks so full body checks at night are critical after potential exposure, including double examination of key areas such as the hair lines and behind ears.

Joyce Johnson is a free lance reporter who has had personal experience with tick-borne disease. She was a staff reporter for The Cape Codder newspaper for 16 years where she wrote extensively about Lyme Disease on Cape Cod. She may be reached by e-mail at FEEDBACK COMMENTS ACCEPTED!