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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
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
[QUOTE=hmlyn04;2998429]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[/QUOTE]
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
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
[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:wave:





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