I joined in 2011 during my own battle with Lyme. Happy to say I am better, but now my 10 year old is battling Babesia and Lyme. Background: 10 year old son (was 8 when he got his tick bite with rash), Tested postiive for 2 strains of Babesia (duncani and microti) and Lyme, and then after much treatment now dr suspects candida and mycloplasm. Was on Mepron and Azith a year ago for 4 months, killed the Babesia microti, but Babesia duncani remained (positive test still). He took a break due to his tummy then was on rifmapin and minocycline for 3 months. Bad tummy (gastritis) resulted, went on a break to heal.
Tried Artemesia for one month (June 2017->July 2017). Babesia symptoms morphed from not being able to walk to heat intolerance. Artemesia twisted his tummy and gut so much that we did ER trips and ultrasounds, etc. up from 10 pm to 3 am screaming in pain. Constipation was an issue too.
Stopped that. Week break. Cryptolepis for 1 week in Aug 2017. Had a herx at 11 drops, but tummy again was an issue, but severe nausea, not twisting of tummy and abdomen (that twisting was only on the artemesia). And constipation (anyone else had crypto constipation? Did miralax help..he was up to two capfuls of miralax)? The nausea has remained after stopping the crypto, and he is up at night crying, unable to sleep because of it. Might be candida, or the lyme, or the babesia...?
Here's the question: new doc recommends Byron White's a-bab. I researched ingredients and found it has Neem in it. Web MD and a ton of other sites say that Neem in any form should never be given to child due to side effects like convulsions, fever, blood diseases, coma, cardiac arrest, death.
Has anyone ever given it to their child? What did their dr say about the Neem component? Please help!
Secondary question... Has anyone's child taken cryptolepis? Did they have constipation and how was it dealt with?
No, we are not doing cryptolepis and a-bab the same time. Might go back to crypto before trying the a-bab, because the neem component terrifies me for my son's health. If neither of those two work, we have to do IV, and that also terrifies me. DS10 is sensory sensitive, and a port or pic line will drive him insane. Plus a port would require surgery to put it in and take it out.
Over a year ago he was a brave little one with antibiotics, many months, as I had described. The ND at the time pushed rifampin and mino beyond my poor little guy's stomach tolerance, and his stomach is torched. That's why oral antibiotics are no longer an option. He can't have strawberries, or pizza or birthday cake (due to acidity or fat content) which totally has demoralized him (he eats in a healthful manner, but can no longer have treats dues to his stomach woes).
I do have a call into he LLMD about the neem component, but I'm sure he'll say just take it, because he suggested it in the first place.
Please those with children please help us with your experiences in this realm.
Thank you.
Blue Sprite
Posted by Hides1 (Member # 6348) on :
My kids go to Dr C in PA- she recommends MC Bab2 or Babs3- the herbs are in glycerin and safe for kids- Beyond Balance has the website- but you must call there with the docs name to get it. Always give meds and herbs under the advice of a doctor- so just ask your doctor if you can try this.
Posted by lookup (Member # 44574) on :
You can call and ask to talk to Byron White himself.
All the best to you and your child.
Posted by Nula (Member # 38409) on :
My heart breaks hearing stories like this one :-(
I have Babesia duncani and can't imagine a child having to go through this kind of hell.
I can't tell you if you can give A-BAB to a child. I felt horrible on it. Crypto, on the other hand, has been a life saver. It is the one med/herb that has made a huge difference for me.
I urge you to read Stephen Buhner's books on Lyme, Bartonella and Babesia. His books are invaluable. There is a method to treating these infections, and he explains it - scientifically.
In any Babesia infection, you need to protect endothelial cells and the spleen. This is essential! You need to get control of the cytokine storm - again: very essential!
Please note: I am not talking about Buhner's old "Healing Lyme" book (think it was published in 2005). He has updated his Lyme book, and written two more (about Bartonella/Mycoplasma and Babesia/Ehrlichia/Anaplasma respectively).
Wishing your little boy the best,
Nula
Posted by blueSprite (Member # 31570) on :
Thank you to Hides1, lookup, and Nula for replying. lookup, I did not know Byron White would even answer questions! Hides1, I will ask our dr about Bab2 and Bab3, to see what he thinks. And Nula, we had started DS10 on crypto, but he suffered from severe constipation from it. Wasn't sure if we should stick with it and supplement with tons of Miralax, or try his new Dr's recommendation of A-Bab. Sorry to hear you had felt horrible on it. Would you mind terribly describing what you mean by "horrible"? So that if I see what you describe also in my son, I'll stop giving him it. Did the crypto give you side effects?
My husband had looked into the Buhner books (thus the crypto), but when the new Dr was intent on Byron White stuff, we changed courses.
Posted by Nula (Member # 38409) on :
Hi blueSprite :-)
I don't have any side effects on Crypto. Other than feeling hot, very briefly, about 10 minutes after taking it.
Even a low-dose of A-BAB made me feel brutally, brutally exhausted. My head felt full, brain fog - like I was in an alternate universe.
The thing is: Buhner supports his herbal suggestions with scientific reasoning. I don't know if Byron White herbs can be backed up scientifically.
Buhner suggests other herbs for babesia as well: sida acuta, alchornea ...
I couldn't tolerate Artemsia either. I don't think it would have helped me. But who knows. I felt bad on it, so I stopped.
I'm glad you said your husband looked into the Buhner books. Even if you don't want to go the Buhner route, I urge you to read every single page. They are eye-opening and invaluable.
Don't hestitate to ask me if you have questions :-)
[ 08-29-2017, 03:17 PM: Message edited by: Nula ]
Posted by Nula (Member # 38409) on :
Gut issues ... Have you tried giving him the Crypto without alcohol? Sage Consulting and Apothecary (www.sagewomanherbs.com) make tinctures (on request) without alcohol. I think they use glycerites instead. I don't know if they are as effective but it would be worth a try.
Your son's gut is likely shot from all the pharmaceuticals he has taken so far. Look into SIBO (small intestinal bacterial overgrowth), candida, SIBO / GAPS / FODMAP diets ...
Posted by Nula (Member # 38409) on :
Have you tried magnesium for the constipation?
Posted by Nula (Member # 38409) on :
I don't know if Neem can be given to children, however, I do know that it can have hypoglycemic effects.
I tolerated it fine, but I was constantly hungry. My stomach would growl (literally) an hour after eating a large meal.
That's why I stopped taking it.
Posted by lookup (Member # 44574) on :
Nula that is so interesting! I started taking Neem in July and I remember being so hungry - which is unusual for me. My stomach would growl too - which I thought was interesting. I thought it was because I was on vacation. Now, I know why. Thanks!
Soo, Neem could possibly be good for people who do not have an appetite.
Posted by blueSprite (Member # 31570) on :
Nula, you've given me some great information. The Dr does suspect candida, and I will research more on that and other gut issues.
Magnesium... he takes nightly epsom salt baths, but does not yet take magnesium orally. The constipation went away instantly a few days after we stopped the crypto, but it's something I'll ask the dr about if we go back to it.
Right not DS is on such a low dosage of a-bab (1/4 of a drop 1 x a day) that we have not yet seen ill-effects (knock on wood). He has very little appetite from feeling bloated and icky in the stomach. Oddly, I have found that fruits and vegetables (which he loves, oddly enough) cause him the most distress. Carbs, proteins, and dairy do not upset his tummy. An apple sent him into 3 hours of sever nausea.
I just don't get this. All other kids today were nervous about their first day of school, and mine had to worry about if he would be well enough to walk into class or would he need his wheelchair. Cannot go outside due to intolerance of heat/sun, so he has to stay inside and while the rest of the kids get to play.
As much as I want to avoid IV, over the past 2 years, he's gotten worse not better. I can't stand this any longer I just want my baby better.
Posted by lookup (Member # 44574) on :
blueSprite - my heart goes out to you and your little one.
What really, really, really helped our son was eating by the guidelines in the book The Paleo Approach to Autoimmune by Ballentine.
To sum it up: Eat 100% grass fed/organs meat, low sugar veggies/ fruit, olive, coconut and avocado oils.
It stopped the cytokine storms that would trip into anxiety/pain/no energy.
He did zero infractions because just eating 2 tablespoons of rice would make him sick for 2 months!
We also used the Chinese eating suggestions for his general feeling of chilliness. Hot ginger tea helped a lot. Also used were things to keep him warm like a wool kidney warmer worn under his shirt to retain heat, etc.
It would be worth getting a Traditional Chinese Medicine evaluation to help the body heal itself by correcting energy leakage.
Digestive enzymes on board?
Restore for gut health also helped a lot. For super super sensitive cases one can start on just 3 drops. It helps heal leaky gut. www.restore4health.com Posted by blueSprite (Member # 31570) on :
Thank you. I will look into the Paleo book. Tried Ginger tea, but he absolutely hated it. Your son became ill on rice? That's one of the only foods my son's tummy can seem to tolerate. I am so confused.
This is the second time I have heard about Restore. I will email my husband to ask him to look into that one while I check out the Paleo. Thank you.
Posted by lookup (Member # 44574) on :
Our son's stomach tolerated rice just fine--it was the cytokine storm it tripped off--stiff neck, costochondritis, anxiety, tendon contractions, etc.
That was the biggest trick/surprise of all--- that he slipped into an autoimmune situation. No one in the family has autoimmune issues.