FLmom Posted June 9, 2014 Report Share Posted June 9, 2014 I just tried to post this but my computer whigged out, and I lost it all, so I'm just going to post the highlights. DS 14 dxed with Lyme today through IGENEX. We've been dealing with pans symptoms for about 2 years, with previous inconclusive bloodwork through Quest. LLMD wants him to take herbal, AL Complex, since it hits lyme in its three forms: intracellular, extracellular, and cyst. DS couldn't tolerate the taste, and since he has major food/OCD/taste issues, I can't see how I'm going to get this in him. Does anyone have any experience with it, or with getting children to take herbals? LLMD said it couldn't be put in juice or sweet liquid. Was wondering if I could buy empty gel caps and put drops in there so he can take it without tasting, but I'm guessing there is a reason they are supposed to be taken with liquid. Also wondering if I should just ask for an extra cellular antibiotic (we've already tried amoxicillin and augmentin with no improvement). LLMD says if he treats it that way it can be pushed into the cyst form. And the herbal will take care of all of it. Sounds good, but do not see my son taking this twice a day for at least 6 months. Ginger Link to comment Share on other sites More sharing options...
Hopeny Posted June 9, 2014 Report Share Posted June 9, 2014 I put drops in a tiny amount of water or I do use juice. We can only do what we can. Go slowwww and lowww with Byron white, they are very strong, Don't overdo it even if you don't see anything happening. Good luck Link to comment Share on other sites More sharing options...
FLmom Posted June 10, 2014 Author Report Share Posted June 10, 2014 The bottle, and what I've read today online, says to start with 1 drop twice a day, and gradually increase. LLMD said to start with 10 drops twice a day and work up to 25. I'm thinking that is way too much! How long have you been using it, and what results have you had? Link to comment Share on other sites More sharing options...
NancyD Posted June 10, 2014 Report Share Posted June 10, 2014 (edited) Yikes, starting at 10 drops BID would have sent my DD to the ER! We always start at 2 drops BID and work our way up every two days with another drop of each. We only go up to 15 drops though and rotate every one or two months to other antimicrobials. Just when we reach 15 drops it's always time to switch. Last month DD was taking A-L complex along with A-Bart, A-Bab, and other Antimicrobials in a few ounces of water. This month we dropped A-L complex and A-Bab and added in Samento. I started by putting her Antimicrobials in cranberry juice and then graduated to room temperature water. She definitely herxes more with these than she did with abx. Edited June 10, 2014 by NancyD Link to comment Share on other sites More sharing options...
Hopeny Posted June 10, 2014 Report Share Posted June 10, 2014 I would start with 1 drop adding 1 drop every week Link to comment Share on other sites More sharing options...
ktdommer Posted June 13, 2014 Report Share Posted June 13, 2014 Ginger- what are your son's coinfections? Are viruses being treated? Link to comment Share on other sites More sharing options...
mama2alex Posted June 13, 2014 Report Share Posted June 13, 2014 We are starting my son on A-L Complex this summer. Lyme doc started him on 1 drop a day, going up to 1 drop 2 times a day after 2 weeks, and progressing on that same path - VERY slowly ramping up. Also, we put this and all nasty tasting herbals in a little organic OJ. Link to comment Share on other sites More sharing options...
FLmom Posted June 14, 2014 Author Report Share Posted June 14, 2014 Bartonella and Babesia were negative. Mycoplasma was 0--lowest doc has ever seen. HHV IGG was 1:160, same as 2 years ago. Doc said IGG was evidence of past infection, whereas IGM was normal, and indicated its no longer a factor ?? DS has absolutely no physical lyme symptoms. His only issues are neurological. Link to comment Share on other sites More sharing options...
SSS Posted June 14, 2014 Report Share Posted June 14, 2014 (edited) Here is my .02 cents. If the A-L tincture does not give you improvement, or he refuses to take it, I would tell the LLMD this, tell them you are dealing with PANS, it's been a real suffer. I am sure your initial consult was not cheap. You mentioned trying Amoxicillin and Augmentin with no real gains- what about Azith or Biaxin? I say this because after a long treatment break off antibx., dd recently went back on antibiotics (Biaxin, suppose to add another next week) and OCD is GONE. No more pacing around the house. No more brain caught up relentlessly on an idea, plaguing her, then me, all day. For whatever reason, could be the anti- inflammatory aspect, (no Myco P here) Azith. and now Biaxin class of antibx give my poor child relief. I'm at the point with PANS where I just want something that works ;-). Y'know? Edited June 14, 2014 by SSS Link to comment Share on other sites More sharing options...
FLmom Posted June 15, 2014 Author Report Share Posted June 15, 2014 Yes, SSS, I agree. I was feeling that too in the office. I just want something that works fast, and the herbs are a slower route. He said he hasn't seen too much success with Azithro and lyme. I think he's seen the most with, oh gee, I think it was Doxycycline, but I could be wrong. Didn't mention Biaxin but will ask about that. Link to comment Share on other sites More sharing options...
SSS Posted June 15, 2014 Report Share Posted June 15, 2014 A very good book for learning about Lyme treatment The Beginner's Guide to Lyme Disease by Nicola McFadzean, N.D. forward by Joseph J. Burrascano M.D. Very thorough, easy to read, explains antibiotic combinations, herbs, detox, diet, emotional, co-infections. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now