posted
With all this talk of Bartonella, It made me think I should share our daughter's recovery quickly here (especially for those who have kids with lyme and co-infections).
At 15 our daughter's health, both physical and mental, went down hill. (she had a tick bite in SE Pa at age 11, and we lived a very risky life style). No rash, few transient symptoms that we blew off as growing pains...etc.
At 15 she suffered from bout after bout of walking pneumonia and strep thoat. Her grades (previously academically gifted) went down hill fast, OCD, anxiety, panic attacks, generally irratic behavior with mood swings, rage...
We sought family counseling and did not tie this to lyme until out of the blue she told us about neuro symptoms she was having. Well, that changed everything.
We took her to the llpsych in Buck County,Pa (god bless her), and our daughter tested positive IGM for lyme and positive for exposure to B.henselae and B. Quintana (which we feel played a big part in her psychiatric presentation.
For treatment we went to the llmd in Wilton, Ct (god bless him, too) where she had about a year of treatment. Homeschooling for half a year helped tremendously, and kept her on track in high school (there are some great on-line choices now).
She is soon to finish her junior year, and she is again an academically successful student (straight A's again!) Has a 142 IQ ,and is preparing furiously for ACT's in April, looking at colleges, and enjoying new friends.
Best of all, I feel like I'm getting my child back and she feels this too. We can live with her again!!!! and she feels like she has a future ahead of her. Our whole family is healing.
We also know that this thing can rear its ugly head again, and are always on the lookout for returning or new symptoms.....I am convinced that lyme is like a prison sentence, but with a chance for some people to get parole.
I get sick to think where she would be if we hadn't accidentally been lyme literate (her dad has lyme/MS). I get sick too when I think about how many other kids go undiagnosed.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
Curious as to what treatments she did? My daughter has been ill 5 years and is now 16.
Posts: 93 | From Midwest | Registered: Apr 2008
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btmb03
Unregistered
posted
Sojourner, congrats to your daughter and your family for getting the help she needed...your story is so inspirational, I'm sure it must not have been an easy road.
posted
Yes, please share her treatments. Would love to know what she took for bart as I have all those symptoms.
Glad to hear that there can be a light at the end of the tunnel.
How long did it take her to turn the corner and really start seeing progress and feel like her old self?
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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feelfit
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Member # 12770
posted
Thanks for this positive post Sojourner. I hope that your daughter continues to thrive.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
How wonderful! It's so good to see success stories. I also see the llmd you mentioned--he's just wonderful. I'm currently at 95% and I credit it all to him. Posts: 237 | From Rhode Island | Registered: Jan 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Sojourner,
Thank you for telling your daughter's success story!
You are dedicated parents who were keen enough to figure out what she needed and made it happen.
I hope she has a fantastic life...she will do wonderful things because she has gone through some very rough times.
All the best to you, your daughter and your entire family!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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These are the stories that those of us who are just starting out on this terrifying journey NEED to hear.
Your story is similar to mine except that my daughter is younger--got a tick bite in 2005 with no symptoms over the next 3 years except for what we thought were growing pains and/or fatigue from a busy day.
She has been diagnosed with borderline Lyme/Babs/Bart and is currently being treated for Babs, although her symptoms seem much more Bart related but who knows...........
I too would love to hear more details about your daughter's treatment protocol. Did you use only antibiotics and/or a combo of those with herbals? Any alternative treatments such as Rife, etc.?
Thank you so much for posting. It renews my hope.
And CONGRATULATIONS!
Posts: 648 | From northeast | Registered: Feb 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thanks for telling us about your daughter, I'm so glad that she is doing so much better! I too was a teen (just going into my senior year) and this thing messed me up so badly. Anxiety/panic, fatigue, depression, cognitive issues.
I am glad your daughter will have a fair shot at the ACT and college, thank goodness she found out!
I am now 30 and I just found out in October that this 'thing' that I've had is Lyme. I took the ACT's, but told my husband recently that I don't even remember taking them. I was just so sick.
Your daughter's recovery gives me hope for my own recovery.
posted
Thank you so much for sharing! We are about to start this same journey with our 2 boys. Ages 10 and 13.
The school thing is something we are talking about right now too. Do we let them try to finish out this year? Will they feel ok enough?
Did your daughter ever take Biaxin? I wasn't sure if this was a normal med given to kids?
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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I'm not sure what meds got her well.......she basically did everything (which I think is very smart). She did doxy, mino, tetra (made her puke at the high dose prescribed) biaxin, zith diflucan, mepron, plaquenil. No heavy duties like rifampin or tini.
By the time she got to plaq and biaxin combo, she had very little reaction and it was smooth sailing.
Interestingly, although she had a negative babesia test, but bab symptoms (air hunger, palps etc), mepron/biaxin seemed to be a turning point. She slept and sweat for several weeks (like scary sleeping-all day and night, and the Mepron really brought on the sweats).
A word of caution......she did get worse before getting better, and azithromycin really brought out the beast in her. She was in school and her grades got worse, behavior worse. We didn't realize it was the zith at first, but after another round we could see cause and effect.
We also had a ped. psych who worked with the llpsych in Bucks County (Human side of Lyme website---an excellent resource btw) and those meds (zoloft, couple others I can't remember) took the edge off a bit, but never really helped much....However, I think it could be an important adjunct for therapy for some people.
Now, the only psych med she is on is a very low dose of an adhd drug to help with residual focus issues (permanent? I don't know as she never had ANY adhd issues until she became symptomatic with lyme in 9th grade).
The school issue is a tough one. I don't work and am a certified teacher so I felt very comfortable with the arrangement. I must say our daughter was very outwardly resistant (but inside I think she was glad someone was coming to rescue her--that was me ) And today she would tell you that the semester off was the best thing for her.
Our 12 yr old (treated at age 10 for neurolyme with no psyh issues) was treated for her entire 4th grade school year and was fine. We would change meds over weekendsand school breaks, and although she had some sick times, she really was on an upward trajectory through most of treatment. I think each child is different and they respond to treatment differently. I also think younger ones tend to have an easier time, although, I know that isn't always the case.
For anyone interested Brigham Young University offers online courses for Middle and High Schoolers at reasonable prices; the program is accredited and reputable. As an educator, I feel there is a lot of value in this approach because it is self directed and facilitates meta-cognition in students which is often overlooked in classrooms.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hopefully you do not live on an endemic property and will not be taking "risks" with the kids anymore? Not only can tickborne illness resurface later in life, but repeated tickbites could make treatment less effective.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Sojourner - I am so happy to hear about your daughter's successful treatment. My babs/bart kid has been in treatment for 6 months and is showing signs of progress.
I am especially thankful that you shared the info about how you kept her on track in school. My kid has been tutored by the middle school for the past year and is doing well. We have hopes that everything will go well for high school starting next year, but I am researching alternate on-line programs as a backup.
I would appreciate it if you could post or PM any tidbits of info or resources for alternate high school education.
Thank you for sharing your success story! - Lymepool
Posts: 170 | From New Jersey | Registered: Jun 2008
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posted
Lymepool----We used BYU high school on line. But there are other programs(Keystone high school is also another good one). One thing about BYU classes-everything can be done on line, but the final exam must be administered by a proctor. We used a local community college testing center, and followed our local high school's program of study so all the classes fit into our daughter's graduation requirements.
Obabe,
That is an interesting observation about risky behavior......I guess some people never learn as we took out kids (and dog) to Canada again last year to vacation on an island in a lake in an area recently recognized as a hot spot for lyme. Our dachshund came down with lyme (a beautiful bulls eye developed on his tummy). Of course, this prompted a lot of "what were we thinking?" discussion. Blunted insight is a terrible thing.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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bettyg
Unregistered
posted
sojourner, happy to read this POSITIVE story about a child; your daughter!!
please copy your link and post in SUPPORT forum in SUCCESS STORIES at top; will help many parents going thru the battle you just did!!
give your daughter an extra hug/kiss for me; will you? bettyg
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hi Sojourner, better late than never. You can pick camping spots that are much safer--high desert in southwest for instance (not Durango--it has lyme ticks as a friend got it there). Or Carribean islands or something. Please be careful if your whole family has been exposed and two children on longterm antibiotics. These drugs are not piffle. They have side effects, such as creating abx resistant bacteria within the person (even ordinary--ie staph, strep etc).
So if you can avoid reexposing your family this is significant. Both kids are doing better now but as you know lyme persists and can come out again during stressful times or if rebitten with new strain(s)
Posts: 2276 | From united states | Registered: Jun 2004
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rosebuds mom
Posts: 118 | From Here | Registered: Sep 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I hear lots of good things about the LLMD in Wilton. MY LLMD used 1 of his favorite protocols on me, which made a Major differece in my recovery (I'd say 95-98% now). Good to hear she's so much better & ready to get on with her lfe, which is only beginning. Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Hi Sojourner,
Thanks so much for posting your daughter's success story.
I am so happy for both of you. It gives me hope that my daughter will get well too.
She has been sick for over a year and will finally see a Lyme specialist in about a week.
Thanks for showing me there is a light at the end of the tunnel.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
Sojourner, Great story - thanks for posting. My daughter went camping with the Brownies (I stayed home this time) - ends up there were some ticks camping too - one kid was bit. We were told to check our kids for ticks. I pray my daughter was safe but I am crazy (since diagnosis) about watching her for lyme symptoms. I am starting new combo today which includes 500 zithromax - hope all goes well!
Posts: 128 | From MICHIGAN | Registered: May 2008
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posted
Glad this story got bumped up to the top. Our LLMD is sending us to a 2nd LLMD to be sure that we are on the right track for diagnosis/treatment. My kid keeps making progress,but it is slow. Babs has receded but bartonella symptoms keep emerging despite treatments.
Sojourner's daughter story reminds me that tbi treatment is a "two steps forward, one step back" thing. However....there is light at the end of the tunnel.
Thanks to you all!
Lymepool
Posts: 170 | From New Jersey | Registered: Jun 2008
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tickbattler
Unregistered
posted
Soujourner,
Thanks so much for sharing your story. It helps to read it, as I am going through a very rough time with my 3 kids right now. My twin 5 year old boys both have psych issues (anger, rages, ADHD, OCD behaviors, oppositional behavior, etc...).
Both have recently started rifampin and one of them is definitely making progress on it, after a rough month. The rages and evil glares and hitting are diminishing.
The second one still is getting worse. He has been on it for six weeks and he is manic and emotional and gets rough and aggressive when he gets too manic.
I am starting to be afraid to take him to his weekly sports class at the local YMCA b/c for the past 2 weeks he has been so aggressive with the other kids. And when I discipline him, he talks right back, such as, "You don't say that Mommy." I make him sit for awhile and then he goes out there and does the same thing or something else as if he never heard a thing. It is very upsetting and challenging.
Also, his OCD behaviors seem to be getting worse as well. He is constantly clapping between doing things.
I do think the rifampin is flaring his symptoms (at least I hope that's what's happening), but I thought after 6 weeks, we should start noticing some improvement.
Do you recall how long it took for you to see a turnaround in your daughter with the psych symptoms? I just want to see that light at the end of the tunnel.
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