Does anyone on this forum have Chronic Lyme Disease? The North Carolina Lyme Disease Foundation is presenting a film that has been three years in the making called Under Our Skin. It is a documentary by Open Eye Productions that tells the untold story of one of the most devastating and misunderstood diseases of the century, Lyme disease. Following the lives of courageous patients and physicians as they battle the disease and its politics, this film brings into focus a haunting picture of our healthcare system and its inability to cope with the fastest growing vector borne disease in the United States. It is being shown at Raleighwood on September 28th from 4pm to 8pm. Anyone want more informations about tickets ask in the thread and I can provide more information. Tickets are 12 dollars in advance and 15 dollars at the door. Seats are limited. I plan on attending. I can not wait to see this documentary that tells part of the story that I have lived through in the last 10 plus years and the last 18 months of treatment. I look forward to meeting other Lyme Disease patients who have gone through a similar journey. I have heard it is very educational and I can't wait to see it myself.
I would like more information. My son at 2 was diagnosed with Lyme disease (last year) and they gave him a 3 week course of antibiotics. I worry that there should be things I should watch for, or is he 'safe' since it was treated. I guess I should start googling!
The impression I am under is that if you catch it early enough, you can knock it out totally with antibiotics, but dont quote me on that.
Well, googling is a start. The question I have for you is how was he "diagnosed." Was it a positive blood test or was it a clinical diagnosis based ona tick bite? There are so many questions and answers I could give you, but I don't wanna sound like an absolute lunatic. Children often have different symptoms than adults. North Carolina has a Lyme Disease Foundation and that is who is showing the documentary Under Our Skin at Raleighwood. Honestly, you probably shouldn't worry. However as he gets older if he has some weird health things, it is always a possibility that Lyme Disease has come out roaring. It goes in waves. http://www.nclyme.org/ http://www.truthaboutlymedisease.com/ I personally was sick essentially my whole life with sinus infections here and other problems there. In college, I began having unexplained seizures and stomach problems. Then I found a lump in my breast and started losing some major weight after I got married. THEN I had gallbladder surgery. It was shortly after the gallbladder surgery when I started having major problems. I started with joint pain, body aches and a fever. I thought I had a major case of the flu. Then other things started creeping in. Muscle weakness, exhaustion, headaches, and so many other things that I would bore you to tears. I went from doctor to doctor to doctor and we finally put the whole story together and traced it back to one tick bite in 1995. I hope that your son is "clear" of the disease. The bad thing about the disease is that an individual strain can hide in your cells and not show up on blood tests. THEN when your immune system is down (IE a surgery or a bad cold or other illness) it begins to multiply and BAM you're sick again.
Yikes sounds like you have had it rough. They didnt do the blood test, decided to be proactive either way. He had the tick, then he had a rash but NOT where the tick was so I did not put two and two together (but I took a picture of just in case) and then a few weeks later had flu ish symptoms. I brought the picture with me to the doc and she decided to treat as if it was Lyme disease.
That is pretty good. Amazing actually. Yes I have had it extremely rough. I didn't put two and two together either when I had my tick bite in 95. I had it and then about two weeks later I went to college. I bumped my head hard and it started bleeding. A few days later I started having seizures. So I attributed the seizures to the head trauma and not the tick bite. And when I was little I had epilepsy so it wasn't a shock to me when I started having seizures in college because I was told that there was a chance it could return. I am amazed they did 3 weeks of abx (Lyme Disease patients abbreviate antibiotics to abx. easier to type out). Did they just do Doxycyline or did they add in other abx? It is always important to take pictures of tick bites and rashes. It is also important to put something near the rash so they can determine size of rash (like a quarter or other money). In any case, Just keep an eye on him in the next few years. It can go into a sort of remission and no symptoms are seen at all. Then a few years go by and something "weird" happens. That's exactly what happened to me. I'd have weird things for a year or two and then nothing. It would kind of clear up on it's own or in my own theory I had so many sinus infections that I would be put on Amoxy or Zithro (which are two abx that also target the Lyme bacteria and other tick borne illnesses). I remember a while back on this forum when I first started reading there was a thread on a tick bite and Lyme Disease. I so wanted to pop in and talk about it, but since I was only a "stalker" of the forum and not a regular poster I didn't want to hop in on what can be a controversial topic. I didn't know much about the forum then, but I knew one thing. DON'T POP IN AS YOUR FIRST POST IN A HOT TOPIC. I hope your son is fine. And you should consider going to see that docudrama. It is completely awesome. I plan on sending in my check sometime this week so that I can ensure to get a seat.
Someone once asked me to write a little thing (well huge thing) on Tick Borne Illness so they could put it on their blog. SO I figured I would put it here as well. They are small. Some are small as the size of the period at the end of this sentence. However, ticks carry big diseases. Some that you may have heard of are Lyme Disease and Rocky Mountain Spotted Fever. Not only are there other diseases, but each disease has many different strains making it difficult to diagnose and to treat. There are several diagnostic tests for tick borne illnesses, but those tests only test for a few of the strains of each illness causing many false negatives. The best lab in the United States to test for Tick Borne Illness is IgeneX in Palo Alto Califnornia, but even they don’t test for all the strains of the bacteria. Lyme Disease is a spiral bacteria. It bores itself into your cells and hides. Because of it’s corkscrew shape, it travels in your tissue and hides itself in healthy cells. Therefore your own immune system doesn’t start to fight it because it doesn’t even realize that there is bacteria there. The bacteria also can change form when in a “hostile” environment (antibiotics) and can form into cysts which are safe from most antibiotics. Lyme Disease reacts differently in each person and there can be a multitude of symptoms. Some people infected with the Lyme bacteria have over 75 symptoms. Most people associate joint pain with Lyme Disease, however not everyone has joint pain. Also another marker of the disease is a bulls eye rash near the site of the tick bite. Again, most people do not get the bulls eye rash or it is in an area where it can not be detected (scalp under your hair). Because the bacterium multiplies so quickly, when the bacterium is killed it creates toxins which make the patient feel worse on antibiotics. There are two types of physicians that treat Lyme Disease. It is a very controversial illness and the two types of physicians believe different things. One particular group of doctors believes that long term antibiotics is not the answer. That if you are on antibiotics for more than a month and still have symptoms that you have Post Lyme Syndrome. The other group of doctors believe that if you have symptoms of Lyme Disease (or any of the other tick borne illnesses) that you still have Lyme. Most Chronic Lyme patients side on the group of doctors that believe in long term antibiotics. I do not know a whole lot about the other tick borne illnesses. I personally have Lyme Disease and another one called Bartonella. I do not know a whole lot about Bartonella except that it is just as difficult to get a positive on a blood test. The symptoms of Bartonella include a cat like scratch rash, fevers, headaches, back aches, fatigue, abdominal pain and many others. Lyme Disease causes multi system symptoms. Lyme Disease can cause flu-like symptoms, joint pain, muscle aches, fatigue, headaches, rashes, muscle twitches, sore throat, sensitivity to lights, seizures, ringing in the ears, diarrhea, abdominal cramps, sweating, heart pain, poor balance, dizziness, mood swings, sleep deprivation, over sleeping, memory loss, speech difficulty, reproduction & sexual dysfunction, low body temperature, continued infections, increased allergies, and many many more. I have had or still have most of the symptoms on the list above and even some more that I haven’t listed. I could go on for days and days about doctors, testing, treatment, and the politics of Lyme Disease. These are some of the best websites on Lyme Disease and the last one is a newsletter for tick borne illnesses and other public health issues. http://www.canlyme.com/patsymptoms.html www.truthaboutlymedisease.com http://www.nclyme.org/ http://www.publichealthalert.org/
