posted
My daughter was first diagnosed at 2 years with Lyme. She has had two rounds of flareups with the 4 weeks of amoxicillin treatment since then. She is 10 now and has been complaining on and off for a couple months of lower back pain and also of knee and ankle pain randomly. Is this something that may be associated with Lyme disease? She just goes to a regular pediatrician now. They have never really done any extensive test other than the lyme blot test. Should I take her to another specialty doctor?
-------------------- Christine R. Posts: 10 | From southern New Jersey | Registered: Jan 2013
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lpkayak
Honored Contributor (10K+ posts)
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my daughter was wimpy winey odd chilc in some ways but at 10 she was too tired to go to school. regular docs and school said it was behavior. i knew they were nuts...she loved school and was stright a student. i took her to alternative doc...he did igenex test -she was dx...able to take meds at school-needed extra snacks and to keep some stuff cold. it took about a year and she seems to be fine-finished college, married. i would get her checked.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Carol in PA
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I know of two children who had ankle pain (among other symptoms) who later had Juvenile Rheumatoid Arthritis.
When she has back pain, she should be evaluated to see if the pain is in her kidneys. Your pediatrician can do this.
Magnesium may help with the joint problems. Here is a product that dissolves in hot water, easier for a child than a large pill.
I add some sugar to that, to make hot lemonade.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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ktkdommer
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posted
I would get your daughter checked out with an ILADS trained doctor. My son had terrible ankles. With Lyme, you always hear about the knees.
Puberty is coming for your daughter and it can be a trigger for a flare up big time.
I would suspect that your daughter has some Lyme in the cyst form since her treatment only consisted of amoxicillin.
Was your daughter bit or do you have Lyme?
So sorry you are having to think about this. I believe it is better to be aggressive now. Having a sick teenager is a terrible thing!
Good luck,
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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lpkayak
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-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
My 8 year old was just diagnosed a couple of months ago and complained of the exact same thing. Back pain and then knee pain and ankle pain...here and there. All little complaints, but I knew something was off.
His Labcorp WB was IGM positive and mycoplasma positive too.
Posts: 618 | From NC | Registered: Oct 2009
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posted
Thank you all for your information. I am in the process of trying to locate a dr. for my daughter. I did not realize that puberty could start a flare-up. This could be why my daughter is complaining of pain in her back, knees and ankles. Kari you mentioned maybe my daughter may have Lyme in cyst form...can you explain what that is for me? My daughter was bit by a tick at 2 y.o so she has had this in her system about 8 years. Carol thanks for the tip. I will definitely try the magnesium for her joint pain.
-------------------- Christine R. Posts: 10 | From southern New Jersey | Registered: Jan 2013
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posted
Thank you all for your information. I am in the process of trying to locate a dr. for my daughter. I did not realize that puberty could start a flare-up. This could be why my daughter is complaining of pain in her back, knees and ankles. Kari you mentioned maybe my daughter may have Lyme in cyst form...can you explain what that is for me? My daughter was bit by a tick at 2 y.o so she has had this in her system about 8 years. Carol thanks for the tip. I will definitely try the magnesium for her joint pain.
-------------------- Christine R. Posts: 10 | From southern New Jersey | Registered: Jan 2013
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posted
I just took my daughter to her regular pediatrician for her back and ankle pain. I asked him if he thought it was Lyme related and he said most likely not. He said she has very little strength when he asked her to push her leg into his hand. He said it is most likely due to not enough core strength and muscle. He did however have her get an xray...His prescribtion is physical therapy if xrays show nothing. On another note..received the Calm Lemon when I ordered at Carols suggestion! Hope it works.
-------------------- Christine R. Posts: 10 | From southern New Jersey | Registered: Jan 2013
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posted
I just took my daughter to her regular pediatrician for her back and ankle pain. I asked him if he thought it was Lyme related and he said most likely not. He said she has very little strength when he asked her to push her leg into his hand. He said it is most likely due to not enough core strength and muscle. He did however have her get an xray...His prescribtion is physical therapy if xrays show nothing. On another note..received the Calm Lemon when I ordered at Carols suggestion! Hope it works.
-------------------- Christine R. Posts: 10 | From southern New Jersey | Registered: Jan 2013
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ktkdommer
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Our pediatrician just kept referring my son out for PT and to sports medicine. NOTHING ever showed on his x-rays. It would be swollen and painful. The pain would radiate up past the joint also. He would have hot to touch feet with weird vein throbbing in the foot and ankle. PT never helped. Years of PT over and over. It was the sprirochetes hanging out in damaged tissue. His ankles are fine now.
My son also had week muscles and tight muscles. PT didn't help, treatment did.
If your daughter has had Lyme for 8 years she has the spirochetes changing into cyst form. It is one way they evade the immune system. Part of treatment will be to bust open the cysts with an herb or med and then kill the spirochetes with an antibiotic or herb.
You can read all about the lovely 3 forms of the sprirochete in Dr. Burroscano's Treatment Guidelines.
Hormones change everything. It is common to have an increase in symptoms prior to menstruation. I won't be able to explain why that is. It has something to do with hormones lowering the immune system and then the bacteria flaring up.
Do you have an appointment for your daughter now? Did you find a doctor? Please do not give up on the Lyme diagnosis.
Best wishes,
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Carol in PA
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What did he say when your daughter showed him the location of the back pain? Was the pain where her kidneys are located?
Did he advise you to have her urine tested when she has the back pain, to see if her kidneys are doing anything unusual, like excreting too much protein.
I'm not a bit surprised that he said he didn't think the back and ankle pain were related to Lyme.
He doesn't know, and he brushed you off.
The magnesium is not going to cure your daughter, but it should help to reduce inflammation and thus pain. She may notice some other improvements in the next few weeks, as some of the Lyme symptoms are due to low magnesium.
Look around on this site: http://www.ctds.info/tics.html Check the site map. This mom has good suggestions for ways to improve your child's diet to incorporate magnesium.
Foods with high magnesium: Dark chocolate Almonds, almond butter Beans, kidney beans, baked beans, bean soup, refried beans, bean burritoes.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Her doctor was pushing on her lower back asking her where it was worse and it seemed to be the spine area. She got her xray done today. I hope to get results in a couple days. If it comes back clear he said she needs to build up her core strength with Physical Therapy. He didn't suggest a urine test at all. I did have a few Dr.s names emailed> I will contact one that is nearest and known and see if my daughter can get an appt. I know there is a long wait. I also took son to pediatrician today and asked for lyme test since some of the symtoms I read on lyme sites sounds a lot like he may have it but with different symtoms than my daughter.
-------------------- Christine R. Posts: 10 | From southern New Jersey | Registered: Jan 2013
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Carol in PA
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posted
Fish oil is a valuable tool in your arsenal to reduce inflammation and pain.
Look for fish oil with a very high EPA (Eicosapentaenoic Acid). Aim for 2000 mg of EPA daily.
Regular fish oil is not very high in EPA. Minami Nutrition makes MorEPA, which has 580 mg of EPA per softgel.
You can look this up at iHerb.com for nutritional information and reviews, but Amazon.com has a better price on the MorEPA.
Source Naturals Arctic Pure has a fish oil with 500 mg of EPA per softgel. I'm taking both of these, to total 2000 mg of EPA daily.
I started out with regular fish oil years ago, and I could not stand the taste. Carlson's Lemon Flavored Fish Oil was a big improvement, with a light lemon flavor and none of that dead fish aroma.
If you or your daughter has trouble swallowing pills, I can give you a method that makes it much easier.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Carol in PA
Frequent Contributor (5K+ posts)
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Vitamin D is important, as your body needs it to absorb the magnesium. Look for D3, which works better than D2.
I take 5000 mg of D3 daily. I'm not sure what dose is recommended for a child.
Cod liver oil is a natural form of Vitamin D, you can check at iHerb.com to see what's available.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I did buy some D3 when I bought the Natural Vitality. She can swallow pills but not sure if she can manage the large fish oil pills. Thanks for helping out.
-------------------- Christine R. Posts: 10 | From southern New Jersey | Registered: Jan 2013
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posted
My son had leg pain, foot pain , ankle pain, and back pain and weakness.
Regular docs said growing pains took a LLMD to put the signs together.
Does the doc give any reason why a normal(I'm assuming) child would have poor core strength?
My son got WAY WORSE when he hit 11 I would not miss this opportunity to head off a potential re-laps.
Posts: 372 | From british columbia | Registered: Feb 2012
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posted
That is what DR said - poor core strength. I remember she never had much strength. With a simple thing like riding a bicycle she would have to take frequent stops even on flat ground. I will take her to the Physical Therapy he prescribed because she needs to build up strength but also make appt for LLMD. I called a known LLMD yesterday and put her on waiting list however I was horrified that I would need at least $3000 in cash out of pocket for visit and tests for first visit. I have another DR I found today I will call. He approved under our health insurance and specialized in Lyme Disease.
-------------------- Christine R. Posts: 10 | From southern New Jersey | Registered: Jan 2013
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