posted
Hi everybody - thanks for all the responses to my various questions and concerns over the years.
Now it's my 2.5 year old son. He began having pains in hands and feet since when he was about 1 year old. We suspect my wife passed Lyme onto him despite her being on abx during the entire pregnancy.
After a positive Igenex result, about a month ago he began abx treatment with an LLMD.
I've seen my wife go through rough times when she was being treated years ago but it's hard to watch a young child herxing and in extreme pain all day and night. He has to be given Motrin every day. And when herxing up to 3 times per day.
I guess I'm seeking any parents who treated their young kids for Lyme to get an idea of what the progression of treatment was like.
I keep hearing that kids recover faster, etc. Has that been the case for everybody? Or can anybody share cases where kids failed to respond to treatment?
I would be very interested in hearing treatment experiences (positive or negative). Thanks!
Posts: 655 | From USA | Registered: Sep 2007
| IP: Logged |
posted
I am sorry you are having to go through this. My child was almost ten when he got lyme and bartonella so my/his experiences will most likely be different from your young son's. If you have not already I would get to a top notch LLMD. I wish your family all the best.
Posts: 164 | From somewhere | Registered: May 2010
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Yes, that age is a different ballpark, because of communication.
I'm wondering how you knew at age 1 the pain was in hands and feet- he could tell you? My very young child never communicated pain, but was late to hit physical milestones and colic, sensory issues.
My experience with congenital Lyme and co- infections was it was made all the worse with vaccinations,
since the immune system was compromised and couldn't handle the assault of toxins and more diseases being put into the body (we didn't know.)
Sending good thoughts--
-------------------- 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 |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Also, anything to bring down inflammation helps my daughter. Gluten free, dairy free diet, low sugar, no dyes.
Epsom salt baths were nightly for years, and helped tremendously. I also used to buy magnesium cream and rub it on her back and give foot massages with it.
-------------------- 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 |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
When he was around 1 we knew it was hand and feet pain because he would put forward whatever was hurting so that we could massage and make it feel better. Also there was eventually limping when his toes hurt, and pressing his fingers on hard objects to kill the pain.
Does the magnesium cream relieve pain?
On your signature I see your child is off treatment - that's great. Could you share how the treatment went? My son is just at the beginning and it's been rough so far. He already got diarrhea 1 month into it.
thanks
Posts: 655 | From USA | Registered: Sep 2007
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
We found the Epsom salt baths helped detox, and greatly calming before bed.
The magnesium cream for massaging also calming- relaxed her whole body and muscles.
Our story of healing her is a long one, with twists and turns over the years. We were healing her body 3 full years before we found Lyme and co.
which was found after a PANDAS diagnosis, believed to be strep induced, then I found out I was carrying Lyme and co., too. No, none of it was easy.
I'm sure your son's Dr. is reminding you of probiotics, etc. I think the magnesium will surely help.
-------------------- 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 |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Minocycline/Minocin and Diflucan may have a synergy and can be given to kids.
Probiotics...of course...daily.
Google: Minocycline anti-inflammatory
And read everything you can about that drug...how it works, for what, etc.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
No. Minocycline and Doxycycline are not recommended for children under 8 years old.
-------------------- 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 |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
CONCLUSIONS:: Minocycline treatment for 3 months in children with FXS resulted in greater global improvement than placebo.
Treatment for 3 months appears safe; however, longer trials are indicated to further assess benefits, side effects, and factors associated with a clinical response to minocycline.
posted
We have seen Dr. J for our 2.75 year old daughter (34 lbs). If you are interested in her symptoms and their protocol, please private message me. She started their treatment recommendations today.
Lyme Parents HAVE to stick together and share information !
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/