I have not posted for sometime, because I was pregnant with my second daughter. And things went well with second pregnancy. My baby is here and she is doing very well. However, my 4 year old daughter recently tested positive for Babesia ducani. I have Lyme and Babesia ducani. I was diagnosed Oct 1st 2009 when my daughter was almost 2 years old. She was tested for Lyme at 2 years old and her IgeneX test cam bad Ind. on a few bands, howver, my LLMD told me that it is common for young children to have indeterminite lines without being positive for Lyme.
Well, in 2011 she starting having strange signs appear, such as swollen bumps on her feet. complaining of her eyes bothering her and her back hurting. And I realized there must be something else going on. I took her to my LLMD in Dec and they tested her for alot of different things, in fact the LLMD wasn't sure that her signs were directly related to Lyme and other co-infections. But unfortunately, they called the other day and said she tested positive for Babesia ducani. Can someone please give me advice on this. Does anyone else have children with Babesia? How was the treatment? What did they take?
I am very concerned because I went through 6 months of liver failure in 2010 that was drug induced. My LLMD told me that he has only had 2 or 3 patients that this has happened to. ANd I think my liver failure was caused by the antibiotics used to treat my babesia. Please help me........Give me advice PLEASE. Thank you so much.
I also want to add that I was on 1,750mg of Amoxicillin my entire pregnancy. Now I am on 1,000mg Amoxicillin and I am breastfeeding. My LLMD said it is fine to breastfeed as long as I am on antibiotics. Please offer advice.......THANK YOU!!!!
Posts: 151 | From california | Registered: Dec 2009
| IP: Logged |
posted
someone PLEASE
Posts: 151 | From california | Registered: Dec 2009
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I listened to Dr. J's talk at the recent lyme conference. He is the world's preeminent pediatric lyme specialist.
He said that he gave atovaquone (ingredient in mepron and malarone) and zith to a baby born with babs and in a week it had improved greatly.
So, get her to a pediatric lyme specialist. I expect she will be fine.
Here are the notes I took on Dr. J's talk, FYI:
2011 ILADS Conference, Toronto, Canada
Pregnancy & Tick Borne Diseases: Gestational Lyme
Dr. J 10/28/11
Impulsivity is an earmark of children born with lyme. Lyme is a multi-system disorder. It can wax and wane and change. It likes collagen (valves), nerves, and joints; it is almost always tick borne
HIV, CMV, any infection in mother can be transmitted to the fetus.
If lyme is transmitted, you will see severe hypotonia (floppy baby), child will be irritable, tire easily, sensitive to light, noise, skin. The hypotonia will cause trouble sucking due to the lips being floppy. This can improve as time goes on. 30% of these children will have developmental delays.
Tissue PCR biopsy is more likely to be positive rather than a test of bodily fluids (blood, urine, spinal fluid, etc.). Test placenta and foreskin remnant.
Some of these children are classified as autism spectrum early on due to their failure to progress. These children do NOT experience regression as is often seen in autistic children. If antibiotics help them, it points to lyme as the true diagnosis.
He described 2 patients. One little boy ran around his office. He had never spoken. It was doubtful that he could understand what others said. But Dr. J. noticed that the boy made good eye contact with him, which autistic children will not do. He took his face in his hands and said to the boy, �I am going to unlock your brain.� The next time the child returned, he ran to Dr. J., put Dr. J�s hands on his face and said, �Thank you for unlocking my brain.�
The other boy had committed a long list of crimes, the most serious of which was attempted murder of his mother, and was about to be removed from his home due to his crimes. The boy announced that nobody was taking any blood from him. Dr. J. gave him a choice--either give blood or have a wrestling hold put on him. He put the hold on the child lightly and the child asked for him to stop. Then, he jumped into Dr. J�s lap and hugged him (while Dr. J. patted him down for contraband) and cried profusely for about 2 minutes. When asked why he was crying like this, the little criminal said, �Nobody has ever given me a choice before!� This boy was diagnosed with lyme thanks to the persistence of his mother.
Treating the pregnant mother: There is less than 1% transmission of the illness if the mother is treated with 2 antibiotics during the pregnancy; 25% rate of transmission if she is treated with just one antibiotic; and 50% rate of transmission if she is not given antibiotics at all.
It doesn�t matter what trimester the mother becomes infected. These are the statistics.
A baby born with babesiosis is in really bad shape. He told of one with heart and numerous other serious problems who was given numerous transfusions at birth, plus atovaquone and azithromycin and is now well. It took 1 week to see great improvement.
Some medications he suggests for the pregnant mother include 1,000 mg amoxicillin every 8 hours for months, also mentioned IM (intramuscular injections), ceftriaxone (? not sure of this--something that started with �ceft� but not ceftin), etc.
The mother can only breast feed the child if she is on antibiotics. Then, yes, it is fine to breastfeed.
He mentioned that a lab known as Advanced Laboratories can now culture for the lyme bacteria. Western Blots test only for exposure, so this is a much better test.
He said that a father can infect a mother. In in vitro fertilization, a father infected the embryo, but it was not part of a study, just anecdotal.
He quoted Dr. H., �If the mind doesn�t know, the eyes don�t see� to explain how lyme can be missed in these children so that they are misdiagnosed.
One month of amoxi should be given to the mother if she is bitten while breastfeeding.
To treat bartonella in children, give them zith and/or Bactrim, ciprofloxacin in an older child.
Antineuronal antibodies can be found in infected children. If they are found, treat the child with antibiotics. The child can have strep antibodies also. He uses various meds including IV Gamma globulin, if needed.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Which lab and what type of test was done for the babesia? I think a positive test probably does mean babesia, but I am not so sure that the species do not cross react.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
I'm not sure what test it was because they did so many on her.
But my LLMD office called 2 days ago and said she tested positive for Babesia ducani & I needed to set up an appoitment to get her in for treatment.
I'm very worried.
I really look up to people on this site because so many of you have helped me throughout my Lyme journey so far and may have saved my life while I was going through liver failure.
Thank you all for the great advice I appreciate it more than you know!!!
Posts: 151 | From california | Registered: Dec 2009
| IP: Logged |
posted
I would get her into a top Dr ASAP. The good thing is that kids bodies are so amazing at restoring and healing. They are so much for resilient. Also, you have paved the way, and know exactly how you can help her!!
I wish I had specific advice, but i just wanted to reply.
Posts: 844 | From CA | Registered: Apr 2010
| IP: Logged |
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
I would say that you need to get her treatment. I don't want to freak you out but babesia is very debilitating and can be serious. Don't let this fester any longer in her. Get it treated.
Posts: 1104 | From N.California | Registered: Jan 2008
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I am sorry your daughter has Babesiosis. I agree with the others about getting treatment and that children usually respond well.
I believe that Dr. B. recommends a much higher dose of Amoxicillin for Lyme treatment. You may want to research this.
Congratulations on your baby!
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
posted
Both of my girls are on babesia treatment. One is six. Her night sweats are gone. I had trouble with her taking art. It was possibly bc of the taste. Sending you a pm.
-------------------- 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
| IP: Logged |
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Our daugher is being treated by Dr. J since May of 2010 when she was 10 years old for Babesia and Lyme. She was negative on the tests so I don't know which strain.
She has been on Mepron and Zitromax since then with some Tindamax thrown in for 7 months. It took appx 10 - 12 months for all her babs symptoms to disappear.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
| IP: Logged |
posted
Is there anyway you can take her to see Dr J.? I think he is the best and you would know you are giving her the best care and exactly the right mix of abx.
During pregnancy DR. J. recommends 2 abx to ensure it is not passed on, and mepron if one has babesia. So I would really try and connect with him regarding your daughter's health. I am sure he will be able to get them healthy in no time Posts: 16 | From Ontario | Registered: Jan 2012
| IP: Logged |
posted
Are the Dr's 100% positive that Lyme (and any co-infections) absolutely cannot be passed through breastmilk, as long as your on antibiotics? For me, if there was even a 1% chance of passing on Lyme, I wouldn't risk it.
I unknowingly passed Lyme onto my son while pregnant (I had no idea I had Lyme at the time). He was born healthy. However, he's now a toddler and dealing with sensory/autism traits, frequently sick, body pains. He just started treatment with an LLMD and is on Amoxicillin, some nutritional supps and detox supps.
I understand how you must feel. I just found out today that his Igenex test showed Lyme, and I am beating myself up with guilt.
My LLMD follows Dr J's recommendations concerning pediatric Lyme treatment. So, hopefully, you don't have to see Dr J for your child to get well. I know that would be ideal, but not everyone can make that happen.
Congratulations on your baby!
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
| IP: Logged |
posted
Thank you all for your advice I currently see Dr. H. and from what I hear he is a good pediatric LLMD. She has an appt. scheduled for the 19th. I want to get a treatment protocol as soon as possible. However, I guess I am just really scared of possible side effects. I went through 6 months of drug induced liver failure from my Lyme treatment protocol. And I am very concerned for my daughter.
I guess I just needed to hear from more parents who have gone through the same thing with their children. Did your children have any side effects? What probiotics were they on? Was it hard to get your children to take the medicine? I don't know how I will get my 4 year old to take any of this stuf, I hope the doc has some suggestions for me.
I have decided to switch my 3 month old to formula, not exactly what we wanted. But after looking at a few threads I think that is the best decision for my baby. Now I just have to find a formula that is best for her. I think I'll try the Baby's Only organic formula. Gosh being a parent can be so difficult at times, especially when you have Lyme involved.
Thank you all for your advice!!!!
By the way where is Dr. J located, and does he do phone consults?
Posts: 151 | From california | Registered: Dec 2009
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
aperture, please do not feel guilty. It is not your fault your son is sick. I hope he responds well to treatment.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
I haven't had a problem getting him to take the Amoxicillin. He has sensory issues and it's hard to get him to try new things, especially new tastes. So, I hide the Florastor and Children's Theralac in his applesauce. I hide the detox drops in his juice. Every now and then, I can get him to take a Nutritional supp gummy, but that's maybe 1/day on a good day.
His herxes are all behavioral. He is extra hyper and then gets tired earlier than normal.
Thankfully, everyone is different, so hopefully, your child won't have the same liver issue as you experienced.
(Sammi: Thanks for the kind words)
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
| IP: Logged |
posted
Dr. J is in CT. I don't know if he does phone consults. Will pm you with his contact information.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by tiffagoo: I have decided to switch my 3 month old to formula, not exactly what we wanted.
If the baby has it, she has it. Continuing to breastfeed will provide her with the best nutrients for her body and brain to grow, and protection for her immune system.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
posted
That's scary. I have to disagree Carol. If by chance, she hasn't gotten it yet, then why risk it? Lyme is so sneaky, it can hide and come out when it wants. No amount of breastfeeding nutrients is worth the chance of exposure to even 1 Lyme bacteria.
In my case, I didn't breastfeed by choice. However, now that I know I have Lyme, I would take every precaution to mitigate any possible damage.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Lyme is very hard with both a parent and child, but at least you are informed.
And I want to tell you: Dr. H has an EXCELLENT reputation for treating children. The fact that you are in with this particular LLMD, and can get your child in, too, is HUGE in my opinion.
My thoughts on the breastfeeding, I know it is a touchy subject.
I had Lyme and co-infections for years, no clue. Had 2 babies at this time. Now, Dr. J states if infected, and never/not being treated at all, 50% chance of being transmitted, and yes, most certainly through breatfeeding.
My daughter with Lyme and co., I BF, and she got Lyme from me- My youngest, whom I only BF for the first 3-4 days of her life, then switched 100% to formula, does not have Lyme and co.
Just my story.
Hang in there, I think you are in very good hands for treatment.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
If a mother has lyme, Dr. B and J say DO NOT BREASTFEED. They have cultured lyme out of breast milk.
If you are on abx, you may be able to though.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I think for those of us who have actually passed Lyme and co. to one of our children, and having to live with the incredible pain and difficulty of that, how it affects the entire family, not knowing if the child will ever really recover,
We would not ever risk again the chance with breastfeeding.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Yes, it's difficult but if we didn't know, we didn't know.
I have suffered so much, though not nearly as much as others, and have at times beaten myself up over whether or not I infected my kids. At the end of the day it truly doesn't matter. All that matters now is that I get them well.
Not sure what I would do if I knew then what I know now. I know I would listen to my gut instinct.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic