'What are their symptoms?' is the most asked question from those who hear our story. Well, for the sake of my son's privacy I will not discuss his symptoms. It is hard to admit, but I never saw my husbands symptoms as Lyme disease until recently, because I thought they should have resembled our son's multitude of symptoms, and they did not. Unfortunately, Franklin's journey started before 6 months ago with symptoms. It was only six months ago when he finally sought out medical advice.
One thing that I had Franklin do immediately after diagnosis was make a list of symptoms. I believe this is important to document all the possible ailments experienced, which could be an indicator of how long one has been struggling with the disease. Also, when antibiotic treatment starts it can make you feel better (eventually), but then symptoms may return. Having a list will help prove to your doctor your not crazy, and these symptoms were present at some point in your life. In our son's case that was the problem. We knew he had chronic Lyme, but the infectious disease specialist said the antibiotics (3 weeks) were enough to kill the bacteria, and his symptoms that returned were just underlying normal kid symptoms. They gave us horrible advice one of which was to seek psychological help. We were reminded the disease was gone (even though they never did any co-infection tests, and dismissed the fact that I removed a deer tick from him when he was 11 months old) cured by that miracle drug Doxycycline (right!).
These are most of the symptoms for Frank. They occurred as early as 1998 and to the present. Allergies, eye floaters, ear ringing and hearing problems, carpal tunnel, numbness in hands, feet issues, nausea, dizziness, heart racing, sensitive to loud sounds, foggy brain (unable to think clearly, or remember names of things and people), decrease in appetite, migraines, fatigue (only recently), inability to sleep, itchy scalp, hair loss, numbness in cheeks. He does not ever remember the EM rash. (Just a note less than 50% of people have this rash.). Unfortunately, his numerous list of specialists, expensive tests (every scan in the book it seemed), unnecessary medicines (never cured ANY of his symptoms), everything the doctors did came back NEGATIVE and "You just have a virus, this will run it's course and you will be better soon." kept plaguing my husband. I saw my stable husband on the verge of his first ever mental breakdown. Thank God for little miracles - I thought of Lyme disease. Can you believe that not one doctor considered to ask, "Where do you live? Could you have been bite by a tick ever?" Had they looked into our lives and inquired if we possibly live near tick infested woods, or MN for heaven sakes, maybe they could have found this disease 6 months earlier. Had I not suggested the possibility of Lyme, how much longer would my husband have questioned his medical health. I was feeling the burden of fear, and the uncertainty of how to help him, especially when he would say, "I am not sure I can live like this." Symptoms like these, and many others are one of the reason's why this disease is so hard to diagnose. If you know someone who has a series of undiagnosed symptoms, don't hesitate to have them be tested for Lyme disease. Remember, if the doctor dismisses the possibility of Lyme, then find a Lyme intelligent doctor who will test your loved one.
Monday, May 30, 2011
'I Sing for Joy at the Work of Your Hands'
Thunder crashed. Hail fell like marbles over our roof, and at our windows, early this Memorial day morning. When I finally rolled out of bed, around 10am (nice to sleep in), I went to our windows and pulled back the curtains, and for the first time in over two weeks I was able to see the work of the Lord's hand through our captivating multi - green oak tree forest. The rain this morning woke every leafy green plant up - it was breath taking. For the past few weeks I have been living in the fear that circles our home. We live in a very thick, shady woods and it butts right up to our yard. Every time I looked out into those woods I would think ticks, lots of ticks, and nothing beautiful, nothing peaceful for my soul. I would some times cry over the overwhelming fear that my children would be found day in, and day out running through trails to feed the rabbits or visit Nana and Pop, most likely collecting ticks. Today, however, I came to the realization that this is God's home, and I must trust in the Lord. With that, I can hear the words of my friend, who expressed, "Just burn your forest down." She was joking, obviously that is not possible. The question then remains... How will we protect our children?
Prevention!
Well, in the book The Lyme Disease Solution they cover many preventative measures, and I will only cover those that we are able to do at this time. First and for most, we pray that the Lord will protect our children, even when we try our hardest to stop the tick insanity.
Mow, Mow, Mow! My son started with mowing the law and then into trimming the weeds around the house, and making our environment less tempting for ticks. After my son took care of the lawn, my hubby went out to tackle the many trails my children have in our forest. This is no easy task for a sick man. I heard the chainsaw for about 5 minutes, and then shortly after he came in to tell me he was tired and that was enough for today. Wow, this is hard to handle. I am used to the man who could go out on a Saturday, early morning run, God only knows how many miles, and then do yard work until dinner.
To Gander Mountain and home again. We bought the yard spray, the rat poison (we have mice, which are the leading carriers of deer ticks, along with squirrels, deer, and birds). Daminex tubes are supposed to be the best to kill the ticks on the mice. We are just out to kill the mice! Permethrin spray (0.5% aerosal, other options: Duranon, Permanone, Permakill), is the choice we have chosen for our children's clothing. . Apparently, Avon makes Skin-So-Soft Mosquito, flea, and deer tick repellent that supposedly the military uses profusely (haven't found this one yet). When the kids go outside we will spray their clothes with deet spray 97%, or at least 30% (this one has proven hard to find). Franklin found information on these current myths regarding deet. Eat lots of Garlic- yummy - insects hate the smell.
"Strip those clothes off in the garage!" has become my common phrase to my adventurous, outdoor children. Then we proceed to the check out line. No, joke, it is a very challenging procedure to check six kids, but it must be done each time they go out and come in. We only hear the boys complain, because they spend the most time in our woods and are constantly being checked. Often times they have to wait outside until I am ready to check them over. Yesterday, we found a nymph tick the size of a pen's head on our five year old. It was just walking through his hair, but we were able to show the boys how important it is to look closely for those nearly invisible ticks.
Next, don't water the lawn! This season with all the rain, MN is prime for the breeding of those dangerous ticks. We look forward to the middle of summer when God blesses us with the hot days, and the decrease in ticks who hate the hot sun. That's right, we won't water our lawn. Shade and moisture is where ticks desire to live, so eliminate those factors and your rates of tick bites will drastically decrease.
Camping... Great, my least favorite activity for my family. I no longer go camping, but that is a different post for another day. I have seen my men come home with dozens (no joke) of ticks and they just keep on crawling out of their clothes, and sleeping gear. Well, spray is the best for decreasing the amount of ticks. Checking and early removal of ticks is next. The tents and gear, we just learned, are supposed to be sprayed down with permethrin as well. Then each child is always sent with a large black garbage bag for all used clothing to be sealed away to contain the ticks. My husband is the one who takes the kids camping, so if these things really are dealt with properly one would have to ask him. One thing is for sure, when the come home, I will feel like ticks are crawling all over me for days to follow when they return - creepy.
As my daughter said last week, "Why did God have to make ticks anyway?" Well, other than to feed the chickens, I told her to ask God when she gets there. With a big hug, we smiled, and remembered to be joyful for the things that God has created.
Prevention!
Well, in the book The Lyme Disease Solution they cover many preventative measures, and I will only cover those that we are able to do at this time. First and for most, we pray that the Lord will protect our children, even when we try our hardest to stop the tick insanity.
Mow, Mow, Mow! My son started with mowing the law and then into trimming the weeds around the house, and making our environment less tempting for ticks. After my son took care of the lawn, my hubby went out to tackle the many trails my children have in our forest. This is no easy task for a sick man. I heard the chainsaw for about 5 minutes, and then shortly after he came in to tell me he was tired and that was enough for today. Wow, this is hard to handle. I am used to the man who could go out on a Saturday, early morning run, God only knows how many miles, and then do yard work until dinner.
To Gander Mountain and home again. We bought the yard spray, the rat poison (we have mice, which are the leading carriers of deer ticks, along with squirrels, deer, and birds). Daminex tubes are supposed to be the best to kill the ticks on the mice. We are just out to kill the mice! Permethrin spray (0.5% aerosal, other options: Duranon, Permanone, Permakill), is the choice we have chosen for our children's clothing. . Apparently, Avon makes Skin-So-Soft Mosquito, flea, and deer tick repellent that supposedly the military uses profusely (haven't found this one yet). When the kids go outside we will spray their clothes with deet spray 97%, or at least 30% (this one has proven hard to find). Franklin found information on these current myths regarding deet. Eat lots of Garlic- yummy - insects hate the smell.
"Strip those clothes off in the garage!" has become my common phrase to my adventurous, outdoor children. Then we proceed to the check out line. No, joke, it is a very challenging procedure to check six kids, but it must be done each time they go out and come in. We only hear the boys complain, because they spend the most time in our woods and are constantly being checked. Often times they have to wait outside until I am ready to check them over. Yesterday, we found a nymph tick the size of a pen's head on our five year old. It was just walking through his hair, but we were able to show the boys how important it is to look closely for those nearly invisible ticks.
Next, don't water the lawn! This season with all the rain, MN is prime for the breeding of those dangerous ticks. We look forward to the middle of summer when God blesses us with the hot days, and the decrease in ticks who hate the hot sun. That's right, we won't water our lawn. Shade and moisture is where ticks desire to live, so eliminate those factors and your rates of tick bites will drastically decrease.
Camping... Great, my least favorite activity for my family. I no longer go camping, but that is a different post for another day. I have seen my men come home with dozens (no joke) of ticks and they just keep on crawling out of their clothes, and sleeping gear. Well, spray is the best for decreasing the amount of ticks. Checking and early removal of ticks is next. The tents and gear, we just learned, are supposed to be sprayed down with permethrin as well. Then each child is always sent with a large black garbage bag for all used clothing to be sealed away to contain the ticks. My husband is the one who takes the kids camping, so if these things really are dealt with properly one would have to ask him. One thing is for sure, when the come home, I will feel like ticks are crawling all over me for days to follow when they return - creepy.
As my daughter said last week, "Why did God have to make ticks anyway?" Well, other than to feed the chickens, I told her to ask God when she gets there. With a big hug, we smiled, and remembered to be joyful for the things that God has created.
Sunday, May 29, 2011
The Eye Opener
While watching the video, Under My Skin, several weeks ago, I had this horrible heart racing feeling that my husband was suffering from Chronic Lyme Disease. I fearfully looked over to my sick and suffering husband (over 6 months of severe problems) and said, "Have you been tested for Lyme's yet?" His response, "No, can you make me the appointment?" That evening, was the second time in my life that my eye's would be opened to the reality that one of my loved one's was suffering from the horrible imitator disease, Borrelia burgdorferi (Bb). After my husband Franklin was tested for Lyme disease, I persisted in emailing the doctor, begging him to administer antibiotics now, and not wait for the unreliable test results. Like most doctor's, he would not give the medicine without the confirmation from the test (I don't blame him, for I am that crazy wife who is paranoid over reading into her husbands long list of symptoms for over 6 months), and so we waited. Knowing that many of these tests come back false negative, I feared the worse. Believing in the power of prayer, I turned to God, and my family went to mass and petitioned the Lord to produce the positive test results needed in order to receive antibiotics. In God's goodness later that day Franklin's test's came in positive, and Franklin started antibiotics (that is the key). For Franklin the journey has just begun, and the antibiotic Doxycycline is just the beginning of a long road to healing.
Several days later I finally got smart and went to my husbands appointment to support him on this journey. I had this strong urge to hit our doctor over the head and scream my frustrations out at him for not catching these symptoms earlier. Knowing my husband would not appreciate those actions I depended on my knowledge and began the steps in educating our family practice doctor on the true nature of this bacteria. I know it is not our doctor's fault, but still there needs to be an awakening for our medical professionals. After years of research, and literally weeks of cramming as much knowledge into my head as I can find time for, the true struggle for us seems to be underway. Finding the specialist for our family that will treat my husband and son for chronic Lyme disease.
In future posts, I hope to share my thoughts and frustrations that we are undergoing with Lyme disease. Hopefully, I will be able to share our joys while on the way to recovery, even in the midst of those dark forests where light seems unable to penetrate our need for healing. My hope is that those who read this post will become aware of how to prevent Lyme disease, and how to catch the early signs, and what to do at the different stages of the disease. Perhaps we will all learn to sympathize better with our loved ones or friends who are truly struggling physically, mentally, and financially from Lyme disease. As a friend of mine said last week, "Are ticks really that big of a problem here?" Well, education is a start, and sharing our story could possibly help others see through the numerous tests that their love one may be undergoing, only to hear those same frustrating words over and over again, "Your test results were negative, it is probably a virus, take some time to rest more, and try this medication. Your symptoms will gradually get better." Instead, perhaps it is time to help them find a Lyme literate doctor, who will test to see what is actually Under Their Skin! JPII pray for us.
Several days later I finally got smart and went to my husbands appointment to support him on this journey. I had this strong urge to hit our doctor over the head and scream my frustrations out at him for not catching these symptoms earlier. Knowing my husband would not appreciate those actions I depended on my knowledge and began the steps in educating our family practice doctor on the true nature of this bacteria. I know it is not our doctor's fault, but still there needs to be an awakening for our medical professionals. After years of research, and literally weeks of cramming as much knowledge into my head as I can find time for, the true struggle for us seems to be underway. Finding the specialist for our family that will treat my husband and son for chronic Lyme disease.
In future posts, I hope to share my thoughts and frustrations that we are undergoing with Lyme disease. Hopefully, I will be able to share our joys while on the way to recovery, even in the midst of those dark forests where light seems unable to penetrate our need for healing. My hope is that those who read this post will become aware of how to prevent Lyme disease, and how to catch the early signs, and what to do at the different stages of the disease. Perhaps we will all learn to sympathize better with our loved ones or friends who are truly struggling physically, mentally, and financially from Lyme disease. As a friend of mine said last week, "Are ticks really that big of a problem here?" Well, education is a start, and sharing our story could possibly help others see through the numerous tests that their love one may be undergoing, only to hear those same frustrating words over and over again, "Your test results were negative, it is probably a virus, take some time to rest more, and try this medication. Your symptoms will gradually get better." Instead, perhaps it is time to help them find a Lyme literate doctor, who will test to see what is actually Under Their Skin! JPII pray for us.
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