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[QUOTE=hmlyn04;2997974]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.[/QUOTE]

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
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.





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