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7 year old daughter diagnosed with Lyme

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Posted 6/1/2013 3:52 AM (GMT 0)
Reaching out for some good advice, help, etc.

Our 7 year old daughter had a suspicious tick bite and developed fatigue and muscle weakness. She was tested and was found to be postitive for 2 of 3 markers for Lyme (she had IgM markers but not IgG). She will be on antibiotics for 3 weeks, amox. 3x/day.

What else would you suggest?

She has probably had Lyme for about 2 months. When we didn't see the rash develop, we thought she was okay, until the fatigue showed up.

We are hoping she won't get to a chronic state.

Should we still seek out an LLMD?

What might be some tests we could request? Like should we request a test to see if she has co-infectors?

Post Edited (mommaklee) : 6/22/2013 7:58:32 PM (GMT-6)

Posted 6/1/2013 3:09 PM (GMT 0)
Oh, your poor daughter. If it were my child I would definitely seek out a LLMD but make sure he/she is an ILADS lyme literate doctor. The doctor will know which tests are needed. You can request the name of one if you start another post asking for one near you, ie: Looking for a LLMD near NY, NY. Someone will get in touch with you. Make sure your email is enabled. Three weeks of doxy is not enough. Please read pages 1-2 and you will get a lot of valuable information. Wishing you and your daughter the very best.

Patty
Posted 6/2/2013 3:08 AM (GMT 0)
You should look for an ILADS recommended LLMD or LLND. Don't start guessing about which tests to run, it will take too long for you to get up to speed on important information about coinfections etc. The doctor will be much more informed about infections common in your area. Your daughter needs treatment asap, and it will take a while for you to get up and running.

Do ask the LLMD about herx (die-off) reactions, biofilms, detoxing, testing for possible MTHFR deletions (which slow the methylation/detox system), and don't forget to use plenty (I'm talking 100 billion daily at least) probiotic cultures while you are using antibiotics.

Lyme and coinfections are generally treated with combination abx targeting the extracellular, intracellular and cyst forms. If only one is used, the bacteria will form impervious cysts (like C. diff does) which will open releasing new spirochetes when the abx are discontinued.

You have found a good forum here. Another I might suggest is the ACN PANDAS/Lyme forum which is composed mostly of parents with infected children.
Posted 6/3/2013 12:52 AM (GMT 0)
Thank you for the quick responses.

I forgot to mention earlier that in addition to the fatigue and weakness, she has begun to have headaches and says she feels yucky after she eats.

She asked me yesterday when she would feel normal again. I feel terrible for her.
Posted 6/3/2013 2:04 AM (GMT 0)
Thank you for the affirmation of herbal protocol. We have been successful with herbal protocols for other things so I would definitely be willing to use one in this case as well.

At this time, while not herbal, I am giving her colloidal silver. I am also giving her kefir to take between abx doses and kombucha for probiotics. I have made an herbal tea for her, but she didn't drink any yet.

I read about the baths and I think we'll start those tomorrow. Remembering to ease into it, of course.

I read the pinned two-page post for learning about Lyme and treatment. It has been helpful and encouraging.
Posted 6/3/2013 2:17 AM (GMT 0)
I would get her to a LLMD asap. There are many co-infections of lyme disease such as Bartonella and Babesia which complicate lyme treatment even more. Dr. Jones is the leading pediatric LLMD. His website has a lot of good info. on it.
Posted 6/3/2013 3:13 AM (GMT 0)
Many LLMDs use herbal protocols along with combination abx therapy. We have been using Buhner Lyme/bartonella protocols, Byron White A-Bart and A-L along with abx for the last 2 years. We also tried Cowden, but didn't even get a herx from it. Twice we tried weaning abx, hoping the herbs would hold back a relapse, but no such luck. This has been the third attempt at weaning abx (after 2 years treatment) and we appear to be having some success, although not enough time has elapsed for us to really tell.

I remember my then 9 yo daughter asking me the same question - whether or not she would ever be better.  Her symptoms didn't occurr suddenly, but happened over quite a while.  I was so sad.  She was fatigued and had IBS/stomach pain for some time before her other symptoms showed up.  I assured her that I would work my hardest to help her, that I would never give up, and that we, together, would make her better.  Children of this age believe their parents, even though I had a little trouble believing myself.  It seemed to make her happier.

1 month into weaning she mentioned to me that there was a point where she never thought she would be better.  At that point she couldn't even remember what feeling better was.  But now - this was it!  She has lots of energy, running without having to rest, dancing without leg pain, easily doing homework and able to think - She was happy!       

Post Edited (rowingmom) : 6/2/2013 9:28:33 PM (GMT-6)

Posted 6/3/2013 2:01 PM (GMT 0)
Three weeks of antibiotics is in no way enough. Do not take the chance and allow the bacteria to hide and then advance and reoccur later on. She is so young that her body should be able to fight off the bacteria if it is pounded hard.

I took my 12 year old to a neurologist who specialized in treated children with lyme. He kept him on antibiotics for 4 months and he has been symptom free since.

Please please get her to an LLMD to prevent a lifetime of suffering.
Posted 6/3/2013 2:06 PM (GMT 0)
Thank you rowingmom and springsjean. While I guessed that we might want to look into a LLMD, your encouragement along with the others has been a good and needed push to just make the calls now. Better to be safe than sorry, or an ounce of prevention is worth a pound of cure. Looks like the nearest LLMDs are between 2 and 3 hours away for us. Maybe we could coordinate appointments with fun trips to D.C.

I am charging my cell phone now so I can make the long distance calls today.
Posted 6/8/2013 7:31 AM (GMT 0)
Hi, I recommend you print out some descriptions of Lyme effects to give to your daughter's school and any activity leaders she may work with.

My son started getting serious mood swings, and having trouble with school work he already knew how to do, plus having a range of pains that moved around from place to place.  It's hard to get an inexperienced person to believe there's a bug responsible for it.

I have waited while my insurance carrier tries to eliminate all other possibilities because they don't want it to be Lyme, rash or not.

It's not an acceptable answer anymore. I feel I have made a big mistake, but the money to go out of insurance doesn't exist. I kept trying to believe the Drs have my son's best interest at heart and they know better. Now, I know better.

As far as it goes, you are lucky to have a diagnosis. Jump on it vigorously.

Be patient with her if she starts having unusual behaviors. Look up the neuro symptoms in children. You'll see there are many reasons to treat this aggressively. I do believe she will be well again.

I met a young lady (20ish) who had Lyme since childhood (8ish). It took a while for a diagnosis and more time to find the right treatment for her, but her health and happiness are pretty good now.

Blessed be. Good luck.

 

Posted 6/8/2013 5:38 PM (GMT 0)
Thank you for the encouragement. I would like to have believed there weren't any neuro symptoms, but I think there are. They are subtle, but there. Sort of like a magnification of some things. For example, she could be moody and pouty, but now it happens faster and is much more dramatic. I need to take your advice myself and remember to be more patient with her. She also gets headaches, a lot. Like from never having a head ache to having them all the time.

After a week of amox. 3x/day, I'm not sure I'm seeing much improvement.

She loves taking her bath every night though. She says the bath really helps her feel better.

I'll be able to get into a specialist relatively soon.

We do homeschool, so I am her teacher :) But it's good to know because in being with friends and stuff, we have to explain that she has Lyme. She's a real trooper and sometimes you wouldn't know how extremely tired she is. Yesterday a family friend noticed that my daughter just curled up on the floor like she was ready to go to sleep and it wasn't even lunchtime yet. "Wow, she's already for a nap!?" So I explained the diagnosis. I was glad that my friend immediately understood.
Posted 6/9/2013 3:44 AM (GMT 0)
If your daughter has lyme and co-infections you will likely not see much of a response to a single antibiotic. Your LLMD will likely prescribe a combination based on clinical evaluation and test results. These will change over the course of a year or so. Be prepared for herxheimer reactions when you begin vigorously treating and every time you switch antibiotics or herbals or increase their dosage. These reactions will include an increase in emotional lability (above what you are noticing now) and any pain symptoms she already has.

Not to scare you but our daughter ended up in a wheelchair while we were on summer vacation - great time to start lyme treatment, huh? but our LLMD forgot to mention herx reactions and detoxing. Her headaches and fatigue were so bad that it was a wheelchair or I had to carry her through the museums - my back was giving out. She was a brave little thing!

I remember her having to curl up and nap, just like your daughter, after a simple trip to the playground, and having to sit on the curb watching her friends play because she didn't have the energy to join in. She couldn't even climb a flight of stairs without sitting down at the top. Now she runs all the time, pedels her bike faster than her friends and is so happy and healthy! I remember thinking - how can a 9 year old have chronic fatigue?

Detox - we drink a couple of glasses of water with fresh squeezed lemon juice with stevia for sweetener. Our LLMD suggested we go gluten/casein/sugar free so we have adopted that diet. Keep her bowels moving - we use metamucil once a day. You already do epsom salt baths. Our daughter loves them too and finds them soothing. Drink lots of filtered water. And don't forget the probiotics once you start on antibiotics, or even start them before - everyone benefits from good intestinal flora.
Posted 6/10/2013 6:48 PM (GMT 0)
Rowing mom, your info helps me too. Thankyou.

I have spoken with two adults who had lyme since childhood. One had support from her mother even before diagnosis and she says it made all the difference in her ability to cope.

 One had a mom who didn't believe him when he said he was in pain and had other trouble. He said it made him become very emotionally isolated. He had to ignore his pain.

You have no idea how lucky you are to have a formal diagnosis. It will help you have confidence in attributing changes to the disease if you see something odd happen.

This site will be very helpful too. I have been led to solid research  and also been given tons of personal testimony about how different people experience  this wretched disease.

The intensified  moodiness is easy for an outsider to label . Good luck.

Posted 6/10/2013 7:26 PM (GMT 0)

Part 2 due to computer trouble.

Be ready to get in a big fight if the antibiotics aren't long enough. I sure hope you don't have that problem, but many people do. That's where the Lyme literate MD comes in if not before.

Here's a few oddball things that have come up with my son - all easily dismissed as imaginary or psychological.  (Knowing him well I can vouch for these being anything but normal for him. )

Extreme moodiness but not consistantly

occassional complete lack of understanding of something simple and clear which he already knows

forgetfulness

decline in writing quality - actual lettering, willingness, spelling

random pains in muscles and joints - sudden on sudden off

frequent headaches and stomachaches

sore skin - light, friendly touches can be painful, even in a happy mood

rashes  - undiagnosed by several Dr.s  - he's had 6 bouts this year

partial loss of vision

frequent fevers and low temps (95.5)

night sweats

I'm sure I'll remember more in a few minutes but that's plenty.

So, be mindful how wacky this can be and give your daughter the benefit of the doubt while maintaining as much normalcy as you can! Whew, good luck.

Posted 6/14/2013 11:09 PM (GMT 0)
Update: We have an appointment with an LLMD for July 8.

Current abx end June 21.

What can we do in the meantime? Is it worth it to try and get the pediatrician to prescribe more abx? If I can't get any, what herbs, essential oils, or homeopathic remedies would you recommend? I'm frustrated at the lapse between the abx ending and the appointment, but I am thankful for everyone's confirmation of the need to see an LLMD, although I had to get over the sticker shock.

P.S. I have been so grateful to find so much understanding from friends and family. They seem to understand that Lyme can become a chronic disease and needs more antibiotics than are routinely prescribed. You might be encouraged to know that your message about Lyme is getting out there. :)
Posted 6/15/2013 4:01 AM (GMT 0)
There are several good protocols out there (Buhner, Cowden, ByronWhite, Jernigen), but I'm not sure I would start them before I saw the LLMD. You may be forced to switch things up if you find co-infections - you don't want to start treating the wrong infections.

At the very most, I would perhaps start with Japanese knotweed (see Buhner's site for dosages and where to purchase - we started with iHerb's Source Naturals Resveratrol but have since moved to 1st ChineseHerbs organic powder made into tea and Woodland Essence tincture), which is a very good anti-inflammatory - most lyme and co symptoms are caused by inflammation. He suggests it's use for all the infections.

For a really good description of lyme and it's coinfections, Buhner's books are great:

Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections
By Stephen Harrod Buhner

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma
By Stephen Harrod Buhner

Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria
By Stephen Harrod Buhner

Herbal Antibiotics: Natural Alternatives for Treating Drug-Resistant Bacteria (Medicinal Herb Guide)
By Stephen Harrod Buhner

One of the first things our LLMD started our daughter on (even before any tests were run) was a Transfer Factor. We used (and are still using) Research Nutritionals MultiImmune. It gives a boost to the immune system and I remember her energy improving a little with that, although it did nothing to help symptoms.

Take the time to research as much as you can. Also get up and running on the topics of biofilms, methylation and detoxing, MTHFR testing and the consequences of genetic deletions, herxheimer reactions.

You could probably also use the time to clean up her diet and detox, detox. Start adding probiotics, find some good multi-strain ones. We used a combination of ReNewLife UltimateFlora (50 billion cultures), Culturelle, Align and home fermented sauerkraut while our daughter was on multiple abx for 2 years and never had a problem with C.diff. If your daughter has gut problems, even the addition of probiotics could cause a herx reaction.

Start low and slow with any new supplements you use and chart reactions. I chart daily symptoms (levels from 1-10) vs treatment, across the month. It saves copious notes and doctors really appreciate them. I am using Excel. If you would like a template, just let me know.

The time will go quickly. Glad to hear you have found proper help with this.

As for the sticker shock, we ended up rolling our expenses into our mortgage renewal. A few more years of mortgage payments, but cheaper than paying off credit cards. It is entirely worth it in the end.
Posted 6/15/2013 4:30 AM (GMT 0)
Thanks for the advice. I agree with you about not doing much, but still supporting her overall health and keeping up with probiotics. I felt like it would be silly to spend much money on stuff only to have to get all different things. It's hard to wait though.

We are doing the baths, and she loves those. We are getting probiotics through kefir and kombucha. I think she would like a supplement too (like UltimateFlora). She interprets Kefir as "drink" and pills as "medicine" and sometimes it's hard to get her to take the probiotic drinks. I am also giving her lemon water, Omega-3's, vitamin-C, and colloidal silver...Her grandparents called today to see if she could spend the night for a few nights. They knew she had Lyme, but not all the extras we are doing. When I explained, they understood, but now a stay with grandparents is on an indefinite hold...my daughter is so disappointed :(

Two weeks of Amoxicillin and she's really not much better at all :( I had hoped the abx would do SOMETHING. You all were right. I'm glad I came here and you all pushed me to find an LLMD.
Posted 6/15/2013 3:03 PM (GMT 0)
Couldn't you set up a "to go to Grandma & Grandpa's" pack? Even just overnight would be good for all - even you! Take her in the afternoon - even late afternoon if necessary and be sure to be there as soon as you can be in the morning with the things she needs at the ready?

Or maybe just for an afternoon?
Posted 6/15/2013 7:06 PM (GMT 0)
Traveler, my dad and stepmom live 2 hours from us and doing a back to back trip like that would be hard on our little guys. However, your post got me thinking and once we've been to the specialist and get a firm protocol going, I think I could make a list that would be helpful to my dad and stepmom. Additionally, my daughter is good about remembering the things that she needs to do. I have found a neat timer at amazon(dot)com that can time 4 things at once and has a small dry erase section next to the timers so you can see what you are timing (search for Taylor Four Event Timer). I use this timer at home and love it. If I were to give one to my dad and stepmom it might help them to remember the protocols.

My stepmom wanted to have my daughter and oldest son over for a few nights so my dad could teach my son to shoot, drive a tractor, and maybe go fishing and she would teach my daughter to sew.

If it were abx only, I wouldn't hesitate a bit. It's having to add in all the extra things that I was afraid would be burdensome to them and might make the visit difficult. If I could confidently communicate what to do when, and they were comfortable with it, and my daughter was well established then I think it would work out.

Thank you for the encouragement and helping me look for ways to make it work rather than just throw up my hands and give up :D
Posted 6/15/2013 7:54 PM (GMT 0)
Grandparents "should" be a large part of a child's life in my opinion - and being one now has only reinforced that for me. I would rearrange anything I could to have my grandsons over more often!!

As long as they are willing to do what needs to be done, it'll allow your little girl to have just a smidgen more of a normal life.

By the way, I home schooled my two kids all the way 'til college and loved every minute of it! Even with the brain fog that came on stronger and stronger as they got further into high school levels, they managed to do a lot of their own instruction!! LOL!

I do hope that all of you can find something that works for you with the kids seeing your parents. Like I said, I believe that it's an important part of a child's -and Grandparents - life!
Posted 6/15/2013 10:37 PM (GMT 0)
Traveler, I agree with you sooooo much!
Posted 6/16/2013 6:49 AM (GMT 0)
Once you work out the trip details don't forget to have them teach her to shoot and drive a tractor too! OK, shoot a gun and drive a tractor, not shoot a tractor. They don't mount on a wall very well.

Happiness is a powerful immune system booster. Since your family is supportive I'm sure you'll work out the logistics to everyone's benefit.

Do remember the bug repellant out in the fields and near any animals on the farm(?). Also, keep Lyme in mind when dealing with the rest of your brood/clan. I don't know how your daughter picked up the tick but the rest of you may have been or may become exposed. Now you know what to look for.

Just a couple weeks ago I talked to a teenager I know who got a "spider bite" at an event we attended in January. I asked if it got a ring and she described erythema migrans. I told her about Lyme and her father was completely dismissive. "It went away after a week."

I'm a little heart sick for her. I reminded her a few extra times to look up Lyme and to get tested if she started getting any odd symptoms. I hope she remembers what I described. Long Beach, CA

By the way, wow! What a wonderful thing to have such a big family. You have a lot on your plate. I'm so glad for you that you have a supportive husband. Good luck. I hope you are a skillfull juggler. :)

Posted 6/16/2013 1:18 PM (GMT 0)
Hi mommaklee and welcome!

I am so sorry to hear about your daughter.  I believe education is the best defense.  I recommend 2 books for you to read in particular:

Healing Lyme by Stephen Buhner (can be bought at Amazon.com) and

Beating Lyme Disease by Dr. David Jernigan (can be bought at www.hansacenter.com, click on store).  Dr. J's book not only talks about natural botanicals (he grows them himself) but all the different ways to detox so the body becomes stronger.  

Both of these authors do not believe in using conventional antibiotics and they explain why.   I know many people and children who have become totally well without using conventional antibiotics.  I know some find that hard to believe but it's true, I am one of those people.

I hope you take this into consideration before you make a decision or at least know you have options.

Hope this helps,

Denise

Posted 6/16/2013 4:09 PM (GMT 0)
Cal cat - I don't know - maybe shooting a tractor would be a good place to start!! Giggle! It's harder to miss! turn
Posted 6/16/2013 5:50 PM (GMT 0)
Thanks Denise! I have Buhner's book in my amazon cart. I also was interested in his "Herbal Antibiotics" book as well. Thanks for the recommendation of Dr. Jernigan's book as well.

I just bought my daughter a notebook so we can log major dates (like tick bite, when she was diagnosed) and then daily symptoms and what supplements/medication/vitamins/herbs she took that day.
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