I posted a few weeks ago in regards to my 4 year old daughter being diagnosed with Babesia Duncani.
My LLMD has the following treatment protocol for her: 1/4 tsp Mepron twice a day. Zithromax, twice a day. Haven't found out how much yet. They have to calculate how much to give her according to her body weight. They also want her to start some herbal tinctures called Immunovira, work up to 7 drops twice a day. And Amyco, work up to 3 drops twice a day. Of course they want me to start one at a time with a few days in between each to see if there is an allergic reaction.
I want to get some input on this treatment protocol. I am very concerned of overdosing because I went through 6 months of drug induced liver failure from the antibiotics I have been on.
If there are some other parents who have been through a similar treatment tell me how things went for their child?
Her main symptom or problem is swelling of her feet and hands. She actually has small lumps that pop up on her feet regularly and are painful for her but they do feel better when I rub them for her. Every once in awhile her fingers will swell. These symptoms don't last long. Maybe 1-2 hours max. But it seems to be more frequent lately. So I am anxious to get her treatment started.
I was told to start her treatment on Monday, however, she began to catch a cold and I wanted to wait until her cold passed to start her on the treatment plan.
Any thoughts??
Any and all comments or suggestions are greatly appreciated. Thank you so much!!
Posts: 151 | From california | Registered: Dec 2009
| IP: Logged |
posted
I don't know anything about that particular treatment because my son doesn't have Babesia.
However, my 2 yr old son has Lyme and is on Amoxicillin 2x/day now, working up to 3x/day.
We also use Kidney Drainage drops and Lymphatic drainage drops, as well as some nutritional supps and probiotics.
I feel for you. I know how confusing and scary this road is.
My son just started treatment a month ago and I have to say, we are starting to see amazing results.
Since his birth, he usually had to go to the Dr every week for some illness. He hasn't had to see a Dr since his LLMD appt in mid-Dec. Also, he has started making eye contact and said his first conversational sentence ever! This is huge because he was showing autism signs.
You will begin seeing small signs of progress and you will know you are on the right path.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
| IP: Logged |
posted
Thank you for your advice. Which LLMD does your son see? This is entirely scary for me. I initially thought being diagnosed myself was scary, however, I'm entering a journey I never wanted to go through. I am more scared for her than I have ever been for myself.
She is completely fine, other than her feet and hands swelling. She has no autistic traits. However, shs is not up to date on her shots because at 2 months of age, when she got her first set of shots, she began to have seizures and had them for 2 weeks until they subsided. She is only up to date on her polio shots, but we believe the DTAP shot is the one that was too much on her body. And I now believe that her underlying Babesia infection had something to do with this. Therefore, she will not be getting her shots anytime soon until we get this whole situation figured out.
This is very scary for me and my husband and I thank you for your positive thoughts!!!!
Posts: 151 | From california | Registered: Dec 2009
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
If you're going with the protocol, I think detox is so important to keep flushing everything out as you go. We found fresh ginger tea with a little turmeric was a very good liver support in addition to everything else.
posted
Thank you so much for your advice!!!
Posts: 151 | From california | Registered: Dec 2009
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
My 8 yr old is on Mepron, Zith and Amoxycillan. No drops of any kind for liver. 2000 D3, multis, florastor for kids (VERY important), probiotics (VERY important) and multis.
She is slooowly getting better. She does best on days she gets exercise. We even bought a trampoline for her. The rebounding is great for them.
good luck. this is so hard with kids.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi tiffagoo:
Our daugher started babs treatment at 9 so a little older. She has been able to tolerate the mepron and zithromax.
Two items I would recommend but I don't know the levels you will need:
A probiotic for colon flora which will be killed off by the anti biotic. If not then a yeast infection will occur.
For the liver we have been having her drink lemon water to help flush any toxins. So far it seems to have worked. Now should how this will work with a 4 year old.
We also added multi vitamins and D3 same as jackie51's comments. Carson D3 liquid on Amazon
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Did you have a test to identify the babesia? Those symptoms are not really typical of the illness but then nothing is really typical with this disease.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I have not heard of the symptoms, swelling of hands and feet and bumps. Are these small bumps on the bottom of her feet or on top? do they go away when you rub them or just make her feel better? Are her ankles swollen or just the feet?
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
My son is 3 today. But, he started treatment for lyme at about age 2. Just like the poster above said, within a month we saw amazing changes. He was a totally different kid.
He also used to get sick all the time and couldn't kick the illnesses. We always had to take him to the Dr for abx before he would get better.
He is doing so much better. We have tried babesia treatment a few times but have had to stop. This time, he got a rash. But, we think he has fifths disease and it's taking a long time to go away.
We have him on bab-1 herbal drops for now.
I don't know what the future holds, but I just keep praying and thinking this nightmare will all be over if we are persistent and follow the treatment protocol.
Best of luck and remember that you are not alone.
Posts: 1104 | From N.California | Registered: Jan 2008
| IP: Logged |
posted
Thanks for all the comments or suggestions.....we do have Florastor for Kids. My LLMD told me to give her 250mg of the probiotics daily which is one packet.
I realize how important a good probiotic is because I was on a probiotic that wasn't that good and I had alot of abdominal pain. I now take VSL#3 and no problems what so ever.
My daughter does well with getting sick usually. She has had some strange things happen, but overall when she gets sick she generally gets better in a normal amount of time.
I realize the hands and feet thing are a little strange in fact initially my LLMD didn't think it was Lyme related, therefore, they did a bunch of tests on her and found Babesia Duncani (She tested positive through IGENEX) Which is what I have as well. I should also mention that when I was diagnosed with Lyme my daughter was 2. I was worried that I had passed it to her in utero. I had her tested at age 2 through IGENEX and it was IND. My LLMD said this is not a positive test because children can test IND and not have the disease. He then told me to watch for signs. Mainly if she has stopped growing. She has not stopped growing however, she is petite for her age. She is 4, 38" tall and 29 lbs.
My LLMD said that if it was related to any bacteria it was Babesia because Babesia can affect the feet. But her symptoms are not common, at least to LLMD. And I have a great LLMD, at least I hope I do. But I have been told by MANY that he is wonderful.
I am considering getting a second opinion with the best Pediatric LLMD, we all know who that is. But I have been told that my LLMD has trained under him. So I must lay my worries to rest and have faith that my daughter is in good hands for now.
@Jackie51- The bumps on her feet vary. Mostly small like a mosquito bite. However, they have got to half a golfball size. Lately they have been bugging her daily but the bumps remain small, but they are bothersome to her. In fact, sometimes she won't even walk because they hurt so bad. And they happen on the bottom on the feet as well as the top of the feet. When I rub the bumps for her, which feel like little knots in her feet, it usually feels better for her. When I rub the bumps they don't necessarily go away. It has affected her ankles once before. Her ankles swelled so bad it looked like an ankle sprain, but once again within 1-2 hours it went away.
It looks like everyone has there child on some sort of Vitamin D3 supplement. Maybe I should look into that. I currently give her NORDIC NATURAL NORDIC BERRIES. They are gummy vitamins, and believe or not she doesn't totally like them. I am concerned that it will be a challenge to get her to take anything else. Such as Mepron. It does taste a little sweet, but I know this whole thing will be a challenge with her. I am actually allergic to Mepron. I took it for 8 days and then I broke out in a rash over my entire body. I have not taken it since of course. I am hoping that I don't run into similar problems with my daughter.
Thanks again for all of your suggestions and comments. I really appreciate it.......THANK YOU(=
Posts: 151 | From california | Registered: Dec 2009
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Mine is on a lemon flavored gummy, 1000 ius. It's for adults. She takes 2 a day, she's around 60 pounds. Her D3 levels are coming up to reasonable numbers. I even like them and will eat one on occasion.
Good luck.
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