I write from the UK looking to share my story, and hoping you might be able to share yours with me.
I have a 5 year old boy with LD and Babs, (confirmed by bloods) and a host of behaviour problems which thankfully are improving slowly on zith, cefuroxime and mepron etc
We have no Lyme pediatricians in the UK, and thankfully our pedi is receiving guidance from one of your best for our son.
My main concern is over my 3 year old daughter.
She has a few symptoms, all non specific, that come and go. BUT she has had IND band 31,39 and +++41 on WB, POSITIVE PCR, and babesia 1:80 titer from Igenex.
I gather on bloods alone some US LLMD would treat her...
Our (non lyme)pediatrician says treat the patient, not the bloods, which I understand. He is not convinced she needs Lyme/babs treatment, and therefore won't prescribe.
What would you do? Have any of you been in a similar position. Watching, waiting and worrying.
Tarnya
Posts: 7 | From United Kingdom | Registered: Oct 2008
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tickbattler
Unregistered
posted
Hi Tarnya,
I sent you a pm in response to yours. I would definitely treat if she were my child. You might want to post her symptoms for others. I would treat even on symptoms alone, but the blood tests just confirm it.
posted
I would also treat lyme and babesia if it were one of my kids.
The western blot results alone are impossible to interpret but the positive PCR (for borrelia I'm assuming) suggests active infection.
Posts: 561 | From mass | Registered: Jul 2007
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posted
My daughter only has a few bands present, but I am going to have her treated. She is 5. I notice all of the symptoms in her that I had, that just continue to get worse with age / non-treatment.
Knee pain, headaches, fatigue, allergies, lots of sinus infections and bronchitis.
But, I refuse to let her get to the point I am at. I get up in the morning, take her to school, come home check my email for a few minutes and go back to bed until I have to go pick her up. The fatigue is killing me. I want to do a lot of things, but I just don't have the energy.
So, I am driving 17 hours away to get a LLMD who will treat us both. Because our Peds here will not treat her. Most doctors here do not believe in long term antiboitics.
But, that is me, and I might be somewhat biased because I have Lyme and I wouldn't wish it on anyone, much less my child. I would rather be safe and give her the meds now, instead of being sorry later because you didn't give her the meds.
The bands that show up on her Lyme test just aren't going to go away, she will probably slowly get worse. If the doctor waited until I looked sick I would never get treated. So, if he waits for her to look/get sick, then it might be too late to stop the bacteria........
Posts: 893 | From Florida | Registered: Dec 2008
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Tickbattler, thank you for your PM, I need to send you another I am afraid.
KS, yes she had a positive PCR test on serum for B.Burgdorferi. "Plasmid, positive confirmed by southern dot blot"
Does this means active infection, or could it be lying dormant, and never come out?
I ask because her symptoms are so mild and come and go. She looks good at the moment, and is very happy. Also as our pedi won't prescribe, I would have to buy drugs off the internet and take full responsibilty to treat her - dose, duration etc etc, a very frightening prospect!
----
These are her possible symptoms noted on and off over the last 4 months. All could be common viral illness, and if it were not for her blood results and the fact her brother has LD and Babs we would not be worried:
The consistant complaint has been a dry cough, and looking a bit pale and dark under the eyes.
On a number of occassions she has complained of nausea, (vomitting less often, perhaps 4 bouts in 2 months).
She said her feet hurt as she got out of bed once, and that day developed a spreading rash that ended in a butterfly like pattern on her face. The rash came and went over the next 3 days (doc said virus).
On occassions she has mentioned her throat or knee hurt. She frequently squeezes her nose saying it tickles.
She is 3, nearly 4, and started nursery 5 months ago, so all symptoms could be explained by viral illnesses........but obviously there is reason to worry about LD and Babs
If I treated her myself (I am not medical) what should I give, and for how long, given her symptoms are so mild and come and go anyway?
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Need lots of help, thank you for your advice. I am sorry you are suffering so. I understand why you need to get help for you and your daughter. At least when you get to see the LLMD he/she will prescribe something right?
Our medics do not believe in long term abx either. Even if I brought my daughter out to the States, and a LLMD said treat, I would still need the drugs prescribed in the UK.....and UK Pedi won't prescribe given such mild/vague sypmtoms still.
Is there a medic on this website who could tell me what I should try and treat her with, and for how long (abx and mepron I assume?)
thank you
Posts: 7 | From United Kingdom | Registered: Oct 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
HI there, Just wanted to invite you to join us on www.lymefriends.com as well; we have a parent's group there. YOu might find some additional support and input.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I have a 6 and a 3 year old and I believe that the symptoms you describe for your daughter are definitely suspect of her having an active lyme/babesia infection. Combine this with the positive PCR and......
For a 3 year old to have dark circles, complain of knee pain, have several bouts of nausea in a couple of months (within a week would be different)etc. is consistent with 2 children in my life (nephew and best friend's son)who definitely had lyme and had their symptoms completely resolve with treatment. Both were 5 yrs old.
Small children have a very difficult time expressing discomfort, malaise, etc.
Getting a positive PCR is like finding a needle in a haystack. My feeling is that the infection is not dormant if this test came back positive. Besides, dormant doesn't mean it won't be a problem tomorrow, next month or next year.
I'm not sure why any pediatrician would not treat based on a positive PCR test result, exposure to babesia AND given some of your daughter's symptoms.
If I were in your shoes, I would have another discussion with my pediatrician. If he/she refuses to treat, I might think about writing a letter that says something like "I, Dr. XXX, refuse to treat XXXX for lyme disease regardless of the fact that she exhibits these symptoms, has a positive PCR, a sibling with lyme, exposure to babesia......" and ask them to sign. Priority is to try to get her treatment and you can find a new pediatrican later.
Just my 2 cents but in no way does my advice replace a mother's intuition. If you feel like she is o.k. then just be sure to keep an eye on her.
Sorry you are going through this...it is never easy when it comes to dealing with this disease!!
Posts: 561 | From mass | Registered: Jul 2007
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I could PM you what treatment our doctor prescribes when we go; however, and this is a big deal...the co-infections are all different and have to be treated differently!!!!
Our co-infection is Ehrlichia, which might/might not be treated differently than the babs. It would be nice if you could find a way to get ahold of a LLMD and talk to him about what he would prescribe.
But, my LLMD will not do phone interviews....
My daughter's teacher spoke to me this morning about my daughter always turning her letters around backwards........I am worried and going to find ways to help her at home.
Posts: 893 | From Florida | Registered: Dec 2008
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How quickly were your nephew and friend's son treated from symptoms being noticed?
What treatment were they given and for how long?
My son with LD and Babs had almost identical lab results as my daughter and IS receiving treatment from the pediatrician.
My son had IRITIS and at the time could not see out of his left eye, so with a sight threatening condition, known tick bite as a baby, and a host of suspicious symptoms I diagnosed him. (I researched Lyme Disease on the internet and ordered Igenex testing). With positive bloods, the pediatrician was persuaded to speak with a US LLMD that we found. That is the reason why he is treating my son now.
The same US LLMD saw my daughters blood results and says treat our daughter also, but Pedi is still resisting as no known tick bite, and vague and mild symtoms.
The UK is 20 years behind the States in Lyme awareness remember. No excuse, just it explains my position a bit better. We have no Lyme aware Pediatricians, thankfully ours was prepared to learn up quick, and speak with one of yours.
I do not wish to risk the relationship with have with our pedi, as that would risk my son's continued care with him. I need him to prescribe for my son, and liase with your LLMD.
I will not stop watching and worrying about my beautiful daughter. There is no easy answer it seems - short of getting drugs off the internet........To take that risk, and the responsibility of dose, duration and monitoring I would have to be convinced I was doing the right thing.
Tarnya
Posts: 7 | From United Kingdom | Registered: Oct 2008
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What a frustrating situation to be in and my heart goes out to you. I've worried about my kids having lyme and I know that daily fear and analyzing every symptom.
My nephew had swollen knees and in retrospect, was very tired all of the time. It was almost a year of this before he was finally tested for lyme disease. He was given 6 weeks of amox (I believe) and he seems to be doing great (completed treatment over a year ago). No recollection of a tick-bite ever.
The other child's symptoms included some complaints of migrating pain (back, fingers), dark circles under his eyes (you just knew he wasn't right), swollen glands, on/off fevers. He was like this for 4 weeks and pediatrician insisted it was a virus. Then, oddly enough, he developed a bull's eye across his face.....doctor still thought "not lyme". Long story short, he got 3 weeks of treatment, symptoms resolved and he's doing great. He was treated just this past summer.
Hopefully both of these boys are cured...time will tell.
I agree with you that buying drugs over the internet and 'prescribing' for your daughter is not a good idea. I would approach it with your pediatrician again, however. Not recalling a tick bite is not a reason to not treat.
Posts: 561 | From mass | Registered: Jul 2007
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