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    Old 05-22-2007, 06:24 AM   #1
    hmlyn04
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    Smile new here, daughter may have lyme

    Hello, I just found this board and I was wondering if anyone could help. We live in CT and our backyard is complete woods. About four weeks ago we found a tick on my almost 7 year old daughter and I got it out with tweezers. I called the doctor but they said it should have been fine. I searched on line and found a picture and it was defnitely the female deer tick.

    Anyway, now two weeks ago she had an unexplained fever all week which the doctor said was viral. Then last week she started complaining that her left knee and shin was hurting very badly. She was actually having trouble walking on them and since then she has been saying that her legs feel weak here and there but the knee and shin still hurt too. She also complained of her neck hurting and she has had swollen glands.

    The doctor was concerned for lyme and she did blood work. Well she called me yesterday and said it was all negative. I explained that my daughter was still complaining and now started mentioning her feet hurt as well. Then she said "Well I don't have the whole lyme test back yet. I'll call the lab and see how long before we find out." I never heard back from her yesterday and now I'm just thoroughly confused.

    Has anyone here had anything similiar? Does this even sound like lyme to anyone? Any help would be very much appreciated. Thanks.

     
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    Old 05-22-2007, 08:05 AM   #2
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    Re: new here, daughter may have lyme

    Hi - as I am sure many of the more senior members of this forum can tell you, Lyme disease does not always show up in the tests. It also sometimes may take a while to appear. Many LLMD (Lyme Literate MD's) will prescribe treatment simply on symptoms alone, which it seems to this lay-person that your daughter does have. The good news is, CT has a lot of Lyme Drs, as does New York.

    My advice would be to get your daughter to an LLMD. Sometimes there are long waiting lists so calling the sooner the better would be myt advice.

    Good news is, if they caught it early enough, they can cure it with antibiotics, etc.

    Hope this helps!

    Take care, Andy

     
    Old 05-22-2007, 08:12 AM   #3
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    Re: new here, daughter may have lyme

    Quote:
    Originally Posted by hmlyn04 View Post
    Hello, I just found this board and I was wondering if anyone could help. We live in CT and our backyard is complete woods. About four weeks ago we found a tick on my almost 7 year old daughter and I got it out with tweezers. I called the doctor but they said it should have been fine. I searched on line and found a picture and it was defnitely the female deer tick.

    Anyway, now two weeks ago she had an unexplained fever all week which the doctor said was viral. Then last week she started complaining that her left knee and shin was hurting very badly. She was actually having trouble walking on them and since then she has been saying that her legs feel weak here and there but the knee and shin still hurt too. She also complained of her neck hurting and she has had swollen glands.

    The doctor was concerned for lyme and she did blood work. Well she called me yesterday and said it was all negative. I explained that my daughter was still complaining and now started mentioning her feet hurt as well. Then she said "Well I don't have the whole lyme test back yet. I'll call the lab and see how long before we find out." I never heard back from her yesterday and now I'm just thoroughly confused.

    Has anyone here had anything similiar? Does this even sound like lyme to anyone? Any help would be very much appreciated. Thanks.
    My son was 8 when he first got the symptms that you are discribing. He has all that you mentioned your daughter having. it started with the "viral" infection that lasted 2 weeks, then the neck pain, then foot pain, groin pain, knee pain, he played many sports and doc's kept explaining it off as sports injuries. He finally got diag. with LD last Oct, 6 years after the initial Virus-that wasn't really a virus at all. You are lucky that you live in CT where there are LLMD's, we live in Texas where the doc's no nothing about LD. The tests that your doc has run on her are probably the basic Elisa, and possibly a western blot done by a "junk" lab, not a Lyme specific lab. Since you live in CT I would seriously advise you to call Dr. Charles Ray Jones office in New Haven, explain to Bonnie that your daughter was bitten 4 weeks ago and what her symptoms are and that you need her to be seen immediately so that she can be treated. They will get her in ASAP! My son is a patient of Dr. Jones, we fly to CT to see him, He is the only ped. lyme specialist in the US. He will have your daughter tested for Ld by Igenex Labs in Palo Alto, CA, for western blot and by Quest and MDL for co-infections and CD-57. Please take your daughter to see him, her life depends on it, don't fool around with reg. doc's who don't specialize in LD. There are thousands of us out there who were told that we didn't have LD and have become Chronic and very sick from the misdiag. I watched my son go from a gifted child and awesome athlete to being practically bedridden, and being put in special Ed, and homebound schooling. Don't let this happen to your daughter, and don't see anyone except Dr. Jones. You will Love this man, he is the most caring Doctor I have ever met. He does not bill ins. but will give you the papers to file yourself. It is not cheap to see him initially,$880.00, he spends 1 1/2 hours to 2 hours on the first visit, but I am begging you, pay the upfront fee he requires, don't let the cost stop you and let your little girl suffer with LD. It is a terrible, disabling disease, that no one should have to live with. She is in the initial stages and can have a full recovery, but left untreated she could suffer for the rest of her life. Money isn't worth watching your child suffer. Ct is an endemic state for Lyme, it is named after Lyme, Connecticut. I am so surprised that her doc. didn't immediately start her on ABX's to irradicate the disease before it gets Chronic. Good Luck, please keep intouch and let me know what Dr. Jones does, Sincerely, Sarah

     
    Old 05-22-2007, 10:03 AM   #4
    hmlyn04
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    Smile Re: new here, daughter may have lyme

    Thank you so much for your information! The doctor did call me back today and said that the new state law will not run the western blot test if the initial test comes back negative. She even said, "So she definitely doesn't have lyme disease." However, everything I read is starting to make me think differently, you know? Now they want me to take her to an orthopedic doctor because of her knee/leg pain. I think I should contact this Dr. Jones and see what they may think.

    On top of all of this, she has always had digestive issues so we are seeing a new pediatric gastroenterologist at yale in two weeks and I certainly want to make sure this is all not connected. Thank you so much for your help and support and I will definitely keep you posted.

    Sarah, how is your son doing now? Thanks again.

    Helene

     
    Old 05-22-2007, 11:12 AM   #5
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    Re: new here, daughter may have lyme

    HMLYN04,

    I'm really glad you found this board! I don't want to say your daughter has LYme, however, it is WAYYYYY too suspicious that she got bit by a tick and then weeks later is having ALL the symptoms of Lyme Disease. This is how my story went and it took me 8 or so years to get diagnosed. Now I'm having problems nuerologically, cardiac, and arthritis in all my joints!!!!!! Please do not wait. Let's say it was really mere coincidence that she ended up getting sick and had a tick bite, you're better off having her take an antibiotic for several weeks than to have any of these major risks involved!

    The Elisa test is rarely good as a diagnostic tool. How long was it that the Dr. tested her for Lyme and the tick bite?

    Living in CT I would not take any chances! I'm from MA and moved to FL not knowing I had Lyme. It took forever for me to get help, not to mention the pain and suffering! We all have the same story on these boards. I was told for YEARS that I just had a virus and there's nothing they can do....DON"T BUY IT!

    I hope your daughter gets better, I will send my prayers your way

    Last edited by moderator2; 05-22-2007 at 05:41 PM. Reason: You may post the names of doctors - you may not offer emails - as per the posting policy - please read the rules

     
    Old 05-22-2007, 04:09 PM   #6
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    Re: new here, daughter may have lyme

    Hi hmlyn04, welcome to the board!

    I am sorry your daughter is sick. I am glad you removed the tick with tweezers. It is the only safe way. For future reference, if you save the tick it can be tested for disease at IgeneX Lab in Palo Alto, CA.

    Below is a Lyme symptom list. You can have any combination of symptoms.

    Unexplained fevers, sweats, chills, or flushing
    Unexplained weight change--loss or gain
    Fatigue, tiredness, poor stamina
    Unexplained hair loss
    Swollen glands
    Sore throat
    Testicular pain/pelvic pain
    Unexplained menstrual irregularity
    Unexplained milk production: breast pain
    Irritable bladder or bladder dysfunction
    Sexual dysfunction or loss of libido
    Upset stomach
    Change in bowel function-constipation, diarrhea
    Chest pain or rib soreness
    Shortness of breath, cough
    Heart palpitations, pulse skips, heart block
    Any history of a heart murmur or valve prolapse?
    Joint pain or swelling
    Stiffness of the joints, neck, or back
    Muscle pain or cramps
    Twitching of the face or other muscles
    Headache
    Neck creeks and cracks, neck stiffness, neck pain
    Tingling, numbness, burning or stabbing sensations, shooting pains
    Facial paralysis (Bell's Palsy)
    Eyes/Vision: double, blurry, increased floaters, light sensitivity
    Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
    lncreased motion sickness, vertigo, poor balance
    Lightheadedness, wooziness
    Tremor
    Confusion, difficulty in thinking
    Difficulty with concentration, reading
    Forgetfulness, poor short term memory
    Disorientation: getting lost, going to wrong places
    Difficulty with speech or writing
    Mood swings, irritability, depression
    Disturbed sleep-too much, too little, early awakening
    Exaggerated symptoms or worse hangover from alcohol

    When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Most people test negative early in the infection. It is my understanding that the ELISA or titer test is the least reliable test and the one most doctors run first. Is this the test that was done?

    Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

    It sounds like your daughter's infection is early, which is good. Getting the proper treatment early in the infection may reduce the chance of long-term complications. I cannot stress enough how important it is to see a knowledgeable doctor. The good news is that the best Lyme pediatrician in the country is located in New Haven, CT. His name is Dr. Charles Ray Jones. I highly recommend callilng his office. He sees patients from all over the country, and he has helped many children.

    It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

    Hang in there okay? Good help is available. I hope your daughter feels better soon.

     
    Old 05-22-2007, 04:12 PM   #7
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    Re: new here, daughter may have lyme

    Quote:
    Originally Posted by hmlyn04 View Post
    Thank you so much for your information! The doctor did call me back today and said that the new state law will not run the western blot test if the initial test comes back negative. She even said, "So she definitely doesn't have lyme disease." However, everything I read is starting to make me think differently, you know? Now they want me to take her to an orthopedic doctor because of her knee/leg pain. I think I should contact this Dr. Jones and see what they may think.

    On top of all of this, she has always had digestive issues so we are seeing a new pediatric gastroenterologist at yale in two weeks and I certainly want to make sure this is all not connected. Thank you so much for your help and support and I will definitely keep you posted.

    Sarah, how is your son doing now? Thanks again.

    Helene
    Helene, Dr. Jones has run several Western Blots on my son and his Elisa was neg. The last Western Blot was done Jan. 23rd when we were up there. Please call his office.The Elisa should be thrown out it is a nuisance and has caused too many people to go undiagnosed. I would not trust any lab for Initial lyme testing except Igenex. And that's the lab Dr. Jones uses. Don't go by what your daughters doc says. You wouldn't let her treat your daughter for Cancer, don't let her treat her for LD either. My son was seeing a ped. gastro also, they diag. with GERD and he was on previced for a few years. Being that he wasn't intiially daig. with LD he has had alot of problems, he was dealing with not only the physical but neuro also, he was seeing things, paranoid, having anxiety problems, OCD, chewing the skin off his fingers. He has been on ABX's for7 months and I have seen alot of improvement in him. All the above mentioned symptoms are gone. He is still having problems with fatigue and pain. He has a Brain MRI and SPECT done at Middlesex Hospital last Oct and it showed Lyme in his brain, I don't know if he will get all his intellegence back, he couldn't learn anything at school the entire year until about a month ago, he is taking the 8th grade over, and I hope that he is able to learn. My son went from being in a gifted school, with awards for spelling Bees UIL comps, knowledge bowls, to asking me how to spell there. He has been in pre-Algebra for 3 years and still hasn't learned it hew will take it for the 4th time this fall. This is why I am so passionate about you getting your daughter to see Dr. Jones, if I had known what was wrong with my son, this never would have happened to him. Dr. Jones office called my on a Thursday and asked if I could bring my son in on Monday, and we live in Texas, and I had him in CT 3 days later. I did everything I could to get him to Dr. Jones once I found out about him. Don't let what happeened to my son happen to your daughter, and don't trust anyone except an LLMD (Lyme Literate MD) living in CT really helps you, because you don't have have the acceptance of your primary to treat her in between visits, she can see Dr. Jones every month. I had to find another doc. that would agree to treat us in between visits. My LLMD is also in CT, in Wilton, I have LD also, we were going up there every 3 months but now every six and seeing a doc in Texas in between. I fell in love with CT, I would move there if I could. My son wants to go to Yale when he "gets his brain back" and become an LLMD. Before he got sick he wanted to be a prof. soccer player. This disease has completely changes his life. I hope that he is able to get his life back and does become an LLMD, because we definately need more of them. Please keep in touch, and call Bonnie at Dr. Jones office, she will help you alot, she is wonderful. Sincerely, Sarah

     
    Old 05-22-2007, 04:52 PM   #8
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    Smile Re: new here, daughter may have lyme

    Sarah, I am so sorry to hear the long path you and your son have been through and thank you so much for your support here. My husband and I just had a long talk and I am going to call Dr. Jones' office tomorrow. Believe it or not, we are only 15 minutes from New Haven so it is very easy to do!

    I do have another question about one of the symptoms if anyone may have an answer? The pain in her leg originally started in the left knee and then into the shin and it is primarily in that leg. Once in a while she mentions the other leg too but not as often. However, even with the left leg, the pain is not a constant. Does that make sense? I mean she is fine for periods of time, then she starts complaining of the pain and then it disappears. Does this sound familiar to anyone? And one last thing, since she had the virus (which was two weeks ago) she is still complaining that her throat feels weird - not a sore throat - but a yucky/sour taste in her mouth.

    Thank you all so much for your time and support. You are all a wonderful group of people. : )

    Helene

     
    Old 05-22-2007, 05:02 PM   #9
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    Re: new here, daughter may have lyme

    Hi - migrating pain that comes and goes is very common. Wierd sensations in the throat are too. Good luck with the Dr! Glad to hear you are so close to such a good Dr!

     
    Old 05-23-2007, 07:50 AM   #10
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    Re: new here, daughter may have lyme

    [QUOTE=hmlyn04;2999193]Sarah, I am so sorry to hear the long path you and your son have been through and thank you so much for your support here. My husband and I just had a long talk and I am going to call Dr. Jones' office tomorrow. Believe it or not, we are only 15 minutes from New Haven so it is very easy to do!

    Thank you all so much for your time and support. You are all a wonderful group of people. : )


    Helene, hello, I am so glad that you are close to Dr. J's office, We went through Stratford in January on our way up to Waterbury. We also go over to Milford where the Mall with the Super Target is and all the good restaurants run down 1 so I know that road pretty well. As for the aches she is describing my son and I go through the same thing, I never know what is going to hurt from day to day. One day the right knee hurts, so the next day the left ankle hurts. With my son he has trouble alot with his right knee and he had pain on top of his foot and also sometimes feels like he is walking on nails. The knee is usually the first area affected by LD. We also have constant neck pain. I've had it everyday for almost 10 years. Sometimes it is worse sometimes better. I am so sorry that she is going through this, I know what she and you being her mother are going through. I am just so glad that you can get her treated soon, and this will all go away. Take care and please let me know what Dr. J's office says. Sincerely, Sarah

    Last edited by sarah92202; 05-23-2007 at 07:54 AM.

     
    Old 05-24-2007, 10:26 AM   #11
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    Re: new here, daughter may have lyme

    Well I just wanted to update all of you that I spoke with Dr. Jones' office yesterday and they can't get her in until July 25th and they said it was imperative she got on antibiotics. So I called my doctor and made them put her on and she is starting amoxicillin today for a 31 day treatment. They didn't seem too happy about me speaking with another doctor but oh well. This my child and my decision!

    Thank you all so much and I will definitely keep in touch and let you know what's happening. By the way, once she is on the antibiotics, what happens from there? I remember reading somewhere that sometimes the symptoms got stronger while on the medication? Is that true or did I misunderstand that? Thank you guys! : )

    Helene

     
    Old 05-24-2007, 04:29 PM   #12
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    Re: new here, daughter may have lyme

    Hi Helene. I am glad your daughter will be seeing Dr. Jones and that you got antibiotics prescribed for the meantime.

    Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

    Hang in there okay? You are a good mom!

     
    Old 05-24-2007, 05:58 PM   #13
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    Re: new here, daughter may have lyme

    Quote:
    Originally Posted by ticker View Post
    Hi Helene. I am glad your daughter will be seeing Dr. Jones and that you got antibiotics prescribed for the meantime.

    Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

    Hang in there okay? You are a good mom!
    Thank you so much. I really needed to hear that part about being a good mom because for the last two weeks I have really been going crazy and second guessing myself every day. I want to do the right thing and sometimes that is a hard decision, you know? Thank you for the heads up about the reaction to antibiotics. She got her first dose tonight so hopefully all will go well. It is so great to have your support. I'll keep you all posted. : )

     
    Old 05-25-2007, 05:38 AM   #14
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    Re: new here, daughter may have lyme

    Hi hmylyn04. I know it is heartbreaking to see your child suffer. It is also difficult to know what the best course of action is.

    Just remember that good help is available, and you are not alone.

     
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