My name is kim, and although I do not post often, I read and learn so much from all of you.
I had my 5 year old son tested for lyme through Igenex. Having tested positive myself, I begin to see symptoms of lyme in him as well and have been seeing those symptoms for a couple of years just could not quite put a name to it. His results came back CDC positive.
My LLMD treats using herbal protocols, and has been treating my son for 4 months now as well.
Some of his symptoms have improved on this protocol such as the night sweats, and random pains, however some symptoms continue to persist.
His primary symptoms continue to be: disturbed sleep, horrible bags under eyes, small size, melt downs, stomach issues.
He occasionally will still have weird pains from time to time or tingling, foot pain etc..
I made an appointment months ago with Dr. J in Connecticut, just because he is the best to treat children and our appt. is next Saturday, May 15th as I still feel that my son has unresolved issues, that the herbal protocol may take care of in time, or it may not. I just understand that Dr. J is the best and he would know what to do.
My son had an appt. with our LLMD yesterday, who mentioned that it would be a waste of money to go and see Dr. J as my son is fully functional, no energy problems, school problems etc...
But my argument is that he does continue to exhibit symptoms (the ones listed above) Sure that may not affect him on a daily basis, but none the less the symptoms are there.
So, my questions are:
Do I treat aggressivaly using Dr. J when my son is functioning pretty normally, but with symptoms that don't necessarily interfere with his daily life? I do understand that conventional antibiotics may be hard on his body.
or
Do I continue the herbal protocol with our LLMD and hope the lingering symptoms will resolve in time since my son is still able to function pretty normally?
Thank you in advance for any advice. Sincerely, Kim
Posted by 17hens (Member # 23747) on :
Hi Kim,
Here's my story, taken from another post from a lady wondering how best to help her 5 year old boy. Maybe it will help you decide.
"My daughter was 7 when she was bitten and was treated with 3 weeks of amoxy. I think she was given 1500mg a day.
She seemed much better at the end of the 3 weeks and regained her strength over the next few months. We thought (and were told by her pediatrician) that she was fine.
Now I know, 7 years later, that she was not "cured", but the 3 weeks of medicine was enough to put the lyme into cyst form where it hybernated within her.
For the last 7 years, although she has not been "sick", she has had many strange symptoms which we now know are from lyme & coinfections hybernating in her body.
She's had various streaks and stretch marks (now we know from Bartonella), trouble with acid reflux (last year diagnosed with GERD and Barrett's esophagus which is preCANCER), and more.
My advice to you, get your son to an ILADS trained LLMD who will know how to treat him correctly. Your little boy's future health is nothing to mess around with."
Wishing all the best health for your family!
Posted by 17hens (Member # 23747) on :
Kim,
Just to be clear...
"Do I treat aggressivaly using Dr. J when my son is functioning pretty normally, but with symptoms that don't necessarily interfere with his daily life? I do understand that conventional antibiotics may be hard on his body.
or
Do I continue the herbal protocol with our LLMD and hope the lingering symptoms will resolve in time since my son is still able to function pretty normally?"
My daughter has functioned normally for 7 years. But throughout that time, she had strange symptoms that didn't seem to fit with a normal, healthy child.
Out of ignorance, I ignored the symptoms. I wish I hadn't. I wish I had gotten her strong treatment right away. Children are resiliant and I know she could have handled it. It's the bad bugs that would have died!
If I only knew then what I know now.
Blessings.
Posted by greengirl (Member # 25316) on :
Hi Kim,
I'm working toward a very similar question to your's. My son is 2. Has symptoms that, in and of themselves, aren't concerning, but put them all together AND with my history, I'm thinking something's up. Especially b/c he was given abx for an ear infection last winter and, during that 10 days, some of those symptoms lessened.
I'm going to set up an appt with his regular ped. to bring this up. See how that goes. If unhelpful, I'm going to see a ped in the area who has lyme, herself, and see what she has to say. Ultimately, though, we may end up heading to CT, ourselves.
All this while my LLMD told me it's not really concerning enough to treat or even test for (I have not yet had my kids tested).
Frankly, I don't care to wait to see if it becomes concerning. I trust my LLMD for me. He treats based on symptoms and puts very little stock in tests, which is cool for me b/c I have an abundance of symptoms. I respect his opinion, but he has an adult practice and I'd be more comfortable hearing it from someone practicing with kids. Plus, if I had been treated back when the symptoms weren't all that obvious, I would have 15 years of my life back.
I don't want anything like what I have inflicted on my kids and I would not hesitate to treat them aggressively, as I may be doing, soon.
Lastly, having been a long time sufferer of disturbed sleep, whatever the cause, IS serious and can really interfere in daily life. And, it compounds. There are tons of studies around about that.
I hope I wasn't too preachy. But, if it were me, I'd go anyway.
Posted by massman (Member # 18116) on :
Does Dr. J use mostly antibiotics ?
Posted by mmcmann (Member # 21872) on :
I just wanted to add that I have been struggling with even getting my girls tested. I know that probably sounds ridiculous, but I am afraid to fine out.
My gut is that both are positive, but I am afraid of the decisions to come AFTER the tests - whether pos or neg, because we all know that neg does not always mean they do not have it!
They are 5 and 2. It terrifies me.
greengirl - I am curious what the symptoms are present in your 2yo? Do they include dry skin issues and bumpy skin rash (pale)?
I really really hate this.
Posted by mmcmann (Member # 21872) on :
Kimaliv,
I wanted to apologize for seemingly taking over your thread with my issues!
As for your question, I am a strong believer in gut feelings and also knowing now just how smart these bugs are, I would still go.
It doesn't mean you have to keep going after that first appt but at least you won't be asking "what if" ten years from now...
Posted by Jane2904 (Member # 15917) on :
Keep your appt. to see Dr. J. Let him decide if he needs treatment.
He has helped our daughter. Best of luck to you and your son.
Posted by sixgoofykids (Member # 11141) on :
If your son is making progress on the herbs, and it sounds like he has, I'd continue that way. You're not ignoring his illness, you're treating it slowly with natural stuff. If he started backtracking I'd switch to abx.
Stomach issues might get worse on abx. Probiotics, fermented foods, parasite herbs, etc. may help him with his stomach issues. Also, candida treatment if he has yeast problems.
Posted by Kimaliv (Member # 23173) on :
Thanks for all of the responses.
Yes, Dr. J does treat using conventional antibiotics.
My gut is telling me to go ahead and keep the appt.with Dr. J and use our LLMD at home to assist with supplments and herbs.
Attack the lyme using both ways herbal and conventional protocols.
My 5 year old son is currently taking probiotics and two natural antibiotics called Cumanda and Barberry along with other nutritional supplements.
Sixgoofykids, have you had experience with treating using only herbal antibiotics/supplements and did they work well in the long run? My son has only been on the herbals for 4 months with some improvement.
I do understand that conventional antibiotics can be hard on his little body, and this is a concern of mine. But also I understand that Dr. J has treated over 9.000 children so there undoubtly is sucess in his treatment of lyme for children as well.
As I'm sure most of you understand, it is so hard to make a decision about your child and know for certain it is going to be the right decision in the long run.
Again, thanks so much for the quick responses. Kim
Posted by sixgoofykids (Member # 11141) on :
Kim, I used antibiotics to beat down the Lyme then finished with natural treatments (Bionic 880, talked about in Oct. 2008 in my blog below). My LLMD, a top ILADS doc, believes there to be a 99.99% relapse rate with abx, so he tries to use herbs to finish treatment to try to figure out a way to maintain without relapse.
There are so many ways to treat and no one way works for everyone, but I'm pretty sure if you went to my LLMD, who does use high dose abx combos, he would continue with the herbs. Again, only as long as your son improved on them. Why mess with something that seems to be working?
My daughter went through 8 months of abx treatment and finished up with 6 months of herbs. She has been in remission for a couple years now. I've been in remission since last August and off abx since Sept. 2008.
It is a difficult decision to make. With gut problems, I'd seriously consider treating parasites, they were at the root of my gut problems. Dr. K believes it to be a big issue for Lymies.
Posted by catskillmamala (Member # 12536) on :
I would go with Dr. J. I did with my daughter (4 at time of diagnosis) and within 10 days of starting treatment for babs and lyme, she was LIKE A DIFFERENT PERSON. Many, many, many things that we thought were just personality quirks- were actually symptoms. She did 18 months of amoxicillan and mepron and she's been off for 18 months. She is fine today (GREAT actually) except for a cold. And this is coming from a mother who gave birth at home and treats ear infections with garlic and echinacia.
I have seen way too many people in my area debilitated (including an 8 year old nephew with seizures) from lyme and coinfections.
Dr. J is great, caring and special- literally the best doctor with the best manner I have ever witnessed. He has also seen 10,000 kids with tickborne infections and he can spot coinfections and other things that other very good doctors can miss.
Just my 2 cents and I agree with goofy in that you are working on it an making progress in any case.
Posted by Kimaliv (Member # 23173) on :
Wow, thanks for the above post.
It is very reassurring to hear such a sucess story and that your daughter did well on Dr. J's protocol.
I have heard great things about Dr. J from here, and your story definitely confirms that.
Posted by t9im (Member # 25489) on :
Kim:
Our daughter sees Dr. J on Friday. This has been a long route for us although at 8 months short for many here.
If we were still following our expert M.D's advice we would have been seeing another expert at a respected childrens hosipital which would have been a dead end.
We are trusting in Dr. J, there are too many parents reports praising his work. We've also read about the Medical Board sanction.
In our opinion this is the best move, fortunately he is only an hour drive away.
Good luck with your decision.
Posted by littlebit27 (Member # 24477) on :
My kids have not shown symptoms yet, knock on wood. I am almost certain I already had Lyme when I was pregnant with my second and third child, of course those the symptoms almost disappeared when I was pregnant and then returned as soon as I had given birth, namely back pain and high blood pressure.
If they do show symptoms I will take them to a LLMD immediately and get them treated with the most aggressive treatment the LLMD deems neccesary. I do not want them to ever have to go undiagnosed for any period of time. If the HPB and the back pain was the beginning I've had Lyme for about 5 years. Now I have all kinds of horrible symptoms and pain, I'm not nearly as bad as it could have been if it has gone longer but bad enough. I don't ever want them to experience this...EVER.
My kids are my world and I would do anything and everything to help make them and keep them heathy. Your son can always keep the natural stuff going with conventional antibiotics as long as there is no interactions of course.
I am a parent but not a parent of a sick (with Lyme, they've had other issues where I've had to make hard decisions) child so this is just my opinion on what I think I would do if I was in your situation. I say if you can afford it and it's not going to hurt anything go to Dr. J. and see what he says, get opinion. Good Luck with your decision, I know it's a hard one
Posted by wtl (Member # 19883) on :
Thank you for posting the question.
Our 4 year old is very much in the same boat and I am contending to make an appointment with Dr. J. She has been treated by our llmd and seems to be improving. But the last time she stopped the abx, she slowly slid back. She has never been tested though.
Please keep us posted and good luck with the appointment.