Topic: What are the cure rates for kids with congenital Lyme?
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I was emailing with another mom tonight and we have given our kids Lyme disease. We are wondering if the cure rates are the same in our kids as it is in the kids who got Lyme through a bite.
Dr. J speaks of kids doing amazingly well with Lyme treatment. He doesn't differ between those kids bitten and those with congenital Lyme.
Can we expect a total cure for our kids or just remission?
Does it matter how long kids have been infected?
Our kids developed normally. Her kids are young and not really sick and mine are teenagers, one of them was very sick.
-------------------- 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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posted
I was told that kids bounce back faster bc their immune systems are better.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I hear that exact same thing but no details. I don't know if that is ALL kids or kids bitten or what?
Is bouncing back a total cure? Remission?
-------------------- 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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posted
I'm not sire. I feel like I'm always going to be walking on egg shells with my daughters. I try to make sure try get adequate sleep, eat well, and I'm always checking hem for ticks. I, so afraid of them getting reinfected.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Tracy9
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Member # 7521
posted
My son was born very sick. He was also bitten in 6th grade and treated with 2 weeks of antibiotics. He never recovered and went downhill fast and things got very bad after that. We self treated him for five months with antibiotics after consulting with a Lyme doc who gave us a road map. He did better but relapsed within a few months. We finally bit the bullet when he was 19 and brought him to Dr. J. He'd been sick his whole life but we didn't know what was wrong with him.
He had learning problems, seizures, very bad ones, learning problems, depression, anxiety, social issues, sleep issues, vision issues, needed physical therapy, occupational therapy, speech therapy, it was a constant parade of hospitalizations and appts his entire childhood.
When he got bitten in 6th grade, and never got better, we began to learn about Chronic Lyme. Then we learned about congenital Lyme. Things fell into place. He was up and down the next several years but mostly down. We fought with his pediatrician for treatment. Every time we'd make him an appt with an LLMD he seemed to be doing well when the appt came up and we'd cancel it, just to have him go downhill again. When we finally brought him in, he tested positive for everything, had a very bad SPECT scan, and went on full treatment with IV at age 19. By 21 he was completely cured.
I guess it's remission, but he is completely healthy now. He is 22, just finished Basic Training and is in the Army. He made it through that. He did not get sick and he did not get hurt like many of his fellow soldiers. He made it through with flying colors. Once he got through a year and a half of treatment, he was able to go back and finish high school with the Principal's Award and Honors. He couldn't even pass before. He is passing Combat Medic school now with an A plus average in a high paced, stressful environment. He has absolutely breezed through the most intensive medical training you can imagine.
A year and a half of treatment after 19 years of being HORRIBLY sick. I never even thought my son would be able to get off antidepressants. I'm shocked at his turnaround. He is successful, happy, and healthy. A whole new kid.
The rest of the three of us continue to struggle. I have hope for my 16 year old but he has additional issues as he has Primary Immune Deficiency Disease and PANDAS as well.
I'm so grateful one of us is out of this hellhole and LIVING!!!
He also did it with no supplements, no special diet, and he was not particularly compliant with his meds, either. But it worked!
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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ktkdommer
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Member # 29020
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Wow! What an amazing story of your oldest. So being sick for years and years as a kid, it is possible to put Lyme behind you? Have you thought about having him checked with the new Lyme test?
It is my 16 year old who is the sickest. It is so hard right now becuause he is a junior and missed so much school prior. He still has so many symptoms neurologically. Learning is hard.
My oldest is symptom free and will have labs done next week. Could he have beaten Lyme? We will try the new lab test in June to make sure the buggers are gone. I do not want him to pass it on to someone else later in his life.
Thanks for sharing!
-------------------- 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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nefferdun
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Member # 20157
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Tracy, that is a wonderful story of recovery that gives hope to everyone. It is just so good to hear about your son getting a life and doing so well. Amazing!
I hope the rest of your family recovers as well. With such astonishing results with your son, you have to believe in miracles.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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We have 2 kids, 11yr old son and 6 yr old daughter.
My wife was finally diagnosed 3 yrs ago after being miss diagnosed for a long time with several health issues(same story told time and time again here).
Once we found out about my wife and we wathced the children, we noticed more and more issues.
My son 11, had asthma that was never fully controlled,couldn't run much in gym, severe anxiety and a lot of foot pain. We had him tested 1 1/2 ago and showed positive bands. He went thru 6mth of treatments...
Today he just finished his first season of Junior Football and has been passing the presidential fitness test at school, straight A student and the anxiety and asthma is all but gone.
My 6yr old daughter, had leg pain, anxiety...tested and showed positive bands. Six months later, doing great!
Bottom line, I thnk kids do recover quickly, it will always be in our minds if something happens in the future(relapse) but there is hope for the kids.
My wife struggles daily, been on IV for over 12 mths, severe neuro issues. But she is not giving up hope, some days are good and that is what keeps her spirits up.
Posts: 52 | From Illinois | Registered: Nov 2009
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ktkdommer
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Member # 29020
posted
Thanks tmcm for your post. Do you think your healthy kids are in remission or are cured?
Have you considered doing the new testing to find out if there is any bacteria left?
I'm sorry about your wife. This disease is not fun!
-------------------- 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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posted
I would say the kids are in remission or at least until there is a test that can provide me better than a 50-50 chance of accuracy. For now we are just going to monitor them closely.
We had no idea what we were up against when our PCP doctor suggested that it was lyme. It has turned our lives upside down as for many on here, but our core family is stronger than ever!
You have to be an advocate for you and your children, so few know about this and we all know what happens when left unchecked...
Posts: 52 | From Illinois | Registered: Nov 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
ktk said... "Have you considered doing the new testing to find out if there is any bacteria left?
Just sticking a quick comment in here to be sure folks know....
There is no test, new or old, that can determine a person has been cured of Lyme disease.
I wouldn't want someone to try the new test and think because it may be negative that they are no longer infected.
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Tincup- my doctor made it sound as the new test would find bacteria if there were any and that if negative, I could expect my son not to relapse. Our doc was just at the ILADS Conference.
Either way, I will be paying for that test for my oldest who is symptom free and nearing the end of treatment. I am going to wait until June until any kinks are worked out at the lab.
I need there to be a test in the future that says he is OK to have kids without infecting his wife or child. I should say he turns 19 this month, so I have some time.
I need there to be an ultimate end to this nightmare for my children who did nothing to deserve this darn disease.
-------------------- 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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posted
Tracy - So glad to hear your son's amazing story. I hope the rest of your family get better. -Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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My daughter's LLMD was at the ILADS conference as well and did not have all that much faith in the "new" lyme testing. So we will not be doing it at this time.
I wish I could remember all the details as to why but I cant remember.
My daughter has been sick since 14 and is now 17. She has many ups and downs but is by no means near any type of remission
Deb g
Posts: 499 | From Malta, NY | Registered: Dec 2008
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ktkdommer
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posted
Thanks Deb for the post. Sorry to hear about your daughter. This is an awful age to be chronically ill. Has she done IV antibiotics? It was a huge booster for my youngest.
I will be waiting to hear more about the new test. I figure 6 months from now, there should be more info about it.
My sick son is doing KPU testing this week. Has your daughter been tested?
-------------------- 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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posted
She did iv antibiotics when at the beginning. She had really good luck but her LLMD at the time did not put her on any maintenace orals or herbs and she relapsed 2 months later.
We are waiting results of the fry bug and some other blood work. systemic yeast, and h pylori. She did have h pylori at the time and she was never re-tested.
We have talked about KPU but have not done any testing. Her LLMD is puzzled because she has had some very good weeks and then keeps hitting the bottom.
She is now in her senior year and applying to college I just hope she gets there...
Posts: 499 | From Malta, NY | Registered: Dec 2008
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ktkdommer
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Member # 29020
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I hope she gets there, too. Keep ruling possible issues out.
-------------------- 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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