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new, 14 year old with lymes, worried mom

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Posted 1/2/2009 11:16 PM (GMT 0)
 Hello, this is my first try at a forum on Lymes. My 14 year old daughter was diagnosed with a positive western blot on 12/22/08. She was exposed to lot's of ticks in early November at a soccer game.  We did not find a tick attached to her but then she had an oval rash on her arm around Thanksgiving. She only remembered the rash after the diagnosis was made in Dec. She showed the rash to my partner but they were not worried and it went away within a few days. We actually think she had undiagnosed Lymes in 2003 as she had a sudden onset, chronic and disabling headache on and off for 18 months with severe fatigue. I believe she tested negative for Lymes back then. She eventually recovered but has had knee pain on and off..  After having the rash, on 12/7/08 she became very ill with head and neck pain. It moved into her back (mid and lower), knees and wrists. She has conjunctivitis, spleen pain and an irritable bladder. She is easily winded and has some cognitive disorientation. She is overwhelmingly fatigued and wants to lie in bed most of the time. The Lymes specialist cannot see her until 1/22/09 but did look at the labs and was " doubtful" about the diagnsis(something to do with the bands but our regular MD does not question the diagnosis.) He said this LLMD subscribes to a more rigid guideline than he does. We can't get a consult again until next week. I am wanting to know if this lack of clear response to the medicine means anything. Does this seem like a situation where oral doxycycline might not be adequate? If this is a reinfection and Lymes has been present for 5 years, could it be the reason the symptoms are so complex? Is there anything dangerous about just waiting it out on the doxycycline? Any information would be appreciated. She has been dysfunctional since 12/7 and we are increasingly worried. We are in a high risk Lymes area.

Post Edited (75924494) : 1/4/2009 7:46:49 PM (GMT-7)

Posted 1/3/2009 1:41 AM (GMT 0)

Hello,

I am sorry to hear that your daughter is so sick.  My 16 year old daughter was diagnosed with lyme this past September without a trace of being bit by anything.  It took several months to get this diagnosis.  Your daughter has most of the same symptoms as mine.  Hers started out with headaches -- feeling like she was being beat with a bat all over her head -- along with light sensitivity, stiff neck, back pain from top to bottom, and wrist and knee pain, and fevers.  To make a long story short, we dropped our pediatrician because she said that Marissa was perfectly  healthy and was imagining her symptoms and that it wasn't lyme because the blood tests came back negative.  Our new internist did some further testing (Western Blot) even though it wasn't protocol, and she determined that the results were questionable enough to consider that she had lyme.  So she put her back on doxycycline until we saw the pediatric lyme specialist (two months later).  The doxy really didn't do anything great for her.  When she saw the specialist he put her on a different regimen of meds (Zithromax, Plaquenil, and Rifampin) because he thought she had lyme and bartonella.  When the coinfection results came back three weeks later, he changed the Rifampin to Mepron as she had babesia and not bartonella and added artemisinin (herb).  It sounds like their symptoms are a lot alike.  My daughter couldn't get enough sleep before this came to a head in July.  Then there was the additional pain that I mentioned above.  She has been on the first part of the meds for two months now, and the second ones for about five weeks.  Some small positive things are happening (hair has stopped falling out, menstral cycle on track again, and headaches are not as severe), but the one thing that has not changed is she still cannot walk.  I am told by the specialist that she will, so I believe him.  The question you asked about staying on the doxy until you see the specialist:  I remember that is the one thing that the office was adamant about was staying on the doxy, whether or not there was improvement at the time, but they couldn't prescribe anything over the phone.  So I do believe that staying on the meds kept everything at bay.  Perhaps you can get in sooner with a cancellation.  We were originally scheduled to see the specialist the end of January 09.  Because we live in the same state as he practices, we were called in on a cancellation and saw him in October (almost two months wait time).   I hope this helps.  Please let me know if I can help further.  Lisa

Posted 1/4/2009 12:34 AM (GMT 0)
It is quite possible that since she might have had Lyme for quite a while, the doxy caused a Herx reaction, and that is why she is feeling worse despite the medicine. My 16 year old daughter was unable to attend school from November on last year due to Lyme. She ended up on home instruction for the year. She is back in school this year on a 504 plan to get her through the day. What state are you from? We are from NJ. I have Lyme, and ,y daughter has Lyme and Bartonella.
Posted 1/5/2009 2:58 AM (GMT 0)
Thanks for the responses. We just got back from Children's Hospital in Boston( I live in Western MA.) We went there for the spinal tap and EKC and to have her eyes checked. Everything was fine. They said that the doxy probably hasn't been used long enough yet and that they have "never seen a doxy failure with Lymes" They see lot's of kids with it. That seems so far off from what I've read on the web. They said if she is not responding in another week to see the ID docs there. When we thought she had chronic migraine several years ago, we used topamax at a low dose( 15 mg) and it got her right out of pain. It isn't working this time. She is is terrible pain and is only getting relief from Darvacet (a narcotic) We do not want to cause dependence or rebound pain but it's hard to deny it when she is desperate. What do you do for pain? Has anything worked? Also, can the herx reaction go on for a sustained time period?
Posted 1/6/2009 9:17 PM (GMT 0)
I'm glad that you were seen by someone in Boston.  We had no luck at Yale so we went to Mass General Pediatric Hospital and saw the chief infectious disease doctor.  It was amazing how more lyme literate they are in Boston than at Yale -- a real eye opener. However, we ended up staying with Dr. Jones in New Haven as her treating physician.   My daughter's spinal tap was negative, too, and she did have lyme.  She doesn't have a prescription for pain, and actually hates taking pills period.  She has to take the pills for the lyme and babesia so she doesn't have a choice.  I know everyone's pain level is different, and most of the time she just grins and bears it, but lavender epsom salt baths temporarily help her.  The relief doesn't last, but for a small time while she is bathing and relaxing it feels good.  Also, the physical therapist uses a big hydrocolator (sp?) heated pad on her entire back, and that feels really good while it is on her.  I know when she herxs it lasts sometimes up to a week with her feeling poorly.  It seems like every two weeks she may have a panic attack while on the meds, and then sometimes there isn't anything at all, so it is hard to say.  Also, the bad storms that we have been getting in CT and MA I'm sure don't help them at all.  Stay in touch and prayers are with you and your daughter.  Lisa

Posted 1/7/2009 2:22 AM (GMT 0)
Can you tell me what the treatment plan has been with Dr Jones. A few people mentioned he is really good. Has he helped her? What did the MA general doc recommend? Was it  a very different approach?
Posted 1/7/2009 3:27 PM (GMT 0)
The MA doctor said he would only do four to six weeks of IV treatment and that would be it. This is why I decided not to go with him. She needed the IV back when this first started and we couldn't get anyone to realize that it was lyme. Dr. Jones is wonderful. He did say that she will recover 100%. His treatment plan is for six to 12 months of meds (we cannot discuss the IV until we see him again in March). The doxycycline wasn't doing anything for her the second time around. Our former pediatrician had her on 10 days because she thought she had Ehrlichiosis. During that time she was improving, but at the end of the 10 days, she took her off of it because she wasn't completely recovered. There was a break in treatment between when we left her and found a new doctor. Once she was on it again it never worked the same way. Dr. Jones started her on Zithromax, Plaquenil, and Rifampin. He thought she may have had Bartonella along with lyme. However, when he got the co-infection blood work back, she actually has Babesia, so he changed the Rifampin to Mepron and Artemisinin (an herb). She is starting to show very small signs of improvement like her hair has stopped falling out, her menstral cycle in back to normal, and her headaches don't constantly feel like someone is beating her with a bat on her head. She doesn't feel there is much improvement, though, but Dr. Jones's office felt that this improvement was significant for only being on the meds for two months. So I am pleased with that. Dr. Jones will treat for a longer period of time, until the patient is better -- two months asymptomatic. With the regular doctor, he would treat only at a maximum of six weeks on IV and doesn't believe in checking for co-infections, which I thought was odd since they really need to be addressed. If you would like to talk live, give me your email address and I will give you my telephone number. I'd be happy to help. Lisa
Posted 1/8/2009 3:31 AM (GMT 0)
759
you can contact me directly. my 12 year old and 5 year old daughters along with myself were all infected. I have taken my 5 year old to Dr. J, he is a doll.
I am getting treatment at envita in az and really doing well and trying to get my 12 year out here too. because she is losing it, losing everthing.
would be happy to tell you more, but privately.
Posted 1/9/2009 6:06 PM (GMT 0)
We had the good fortune of getting to see a Lymes specialist fairly close by that accepts my insurance. She is an ID doc but not a typical one. She switched the antibiotic to Cef..something as it will penetrate the brain/ blood barrier better than doxy. If this does not work we will do IV. She in cautious about IV right away as the risk, in her opinion, is driving an auto-immune response. She is testing for co-infections, doing a more sensitive Lymes test and looking for auto-immune issues. She also stressed the low glycemic index diet and supplementation. She had no doubt my daughter has Lymes and congratulated her for producing those" two protiens " on the Western Blot because if there was only one we would hae been told she didn't have it.  She supported the use of the heavy pain killer we are using explaining that pain causes stress hormones that increse the inflammatory respone. She was cautious about commenting on whether the health crisis my daughter experienced in 03( which looked very much like this) ws Lymes. I assume she did not want o make us upset with the missed diagnosis. She does want to look over any labs we have from that time. I was very relieved and felt very taken care of. I trust she knows her stuff. She spent almost two hours with us.  My daughter is being set up with a home tutor so, for now, all bases are covered. time will tell..If she can't get her well, we will try to get to Dr j who is only about two hours away.  Lydia  ( is there a spell check function on this board? )
Posted 1/9/2009 6:53 PM (GMT 0)
I am so happy that you were able to get in to see someone who recognizes lyme.  It sounds like you are all set and in good hands.  She may have some herxing because she switched meds, but it will pass.  I hope she feels some relief very soon.  Keep in touch.  Lisa

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