Santi

My IGG band 58 is positive. I spent all my summers in Hungary growing up. Hmmmmm! Andrea

Thanks everyone for your feedback. Our stories all sound alike. His LLMD took him off Rifampin to check his eosiniphil count tomorrow (which has been raised). It will be interesting to see if count goes down, then he is allergic. If so, we will need to change abx. Not looking forward to a ramp up in behaviors. Guess its all part of the game. Andrea

Today I got my results back for Lyme. The IGM negative (but band 83-93 + marked suspicious). The IGG is Positive based on Igenex. These bands are positive: 34+, 39+, 41+++ and 58* (this is not an important band). Does this mean I WAS exposed to Lyme but NOT currently infected? I gather its likely my son got it from me. What do you think? Andrea

After about 6 weeks of treatment, my son's anxiety/rage is beginning to decrease. This by far, has been the worse to deal with. What's interesting is that his ADHD is through the roof. He is happier (giggles a lot more), but extremely hyperactive/impulsive plus his tics (which we haven't seen in a very long time) have reappeared. It reminds me of when we did a trial of Celexa. When he was on this med his anxiety decreased but he became almost manic like. Has anyone else experienced this while on lyme/bart treatment?

Wendy, thanks for letting me know. I guess this is all part of the game, and something we just need to work with. I feel alot better now. Andrea

My son's Eosiniphil count is 17 (range 0-10). His regular pediatrician is concerned that it is possibly an allergic reaction to the Rifampin 450mg my son is on (he is also on Azith 250mg). Before starting treatment for both Lyme and Bartonella his count was normal (5 weeks ago). His LLMD said its high but not alarming but to let him know if it continues to rise. Has anyone had this type of experience with allergic reactions? If so, how was it handled? Finally we are beginning to see progress with his behaviors and I am concerned that we may need to go off. Would love to hear any feedback. Thanks Andrea

My son has been on treatment for Lyme and Bartonella for about 4 weeks (Rifampin 450mg & Azith. 250mg). Initially there was a bit of flare up of OCD followed by a good 1-2 weeks. However, he did seem really tired from the abx so it may have been that keeping him calm. Now, there is a huge flare up of OCD-ITS REALLY BAD, plus some additional strange behaviors we haven't seen before. I assume the herxing varies for everyone. But has anyone seen any sort of pattern with the herx? How can we tell for sure its a herx and not just a bad reaction to the abx? He has not changed dosages. Andrea

The body produces its natural Melatonin at sundown. Any supplements of Melatonin should be given at sundown to augment the natural melatonin. Practically its usually 2 hours BEFORE bedtime. Melatonin is sleep Regulating NOT sleep inducing. Many parents make that mistake and give it at bedtime. Over time with usuage you are actually messing up the biological sleep rhythmns of the child if given incorrectly. Calms forte for kids works ofr some kids and Calmes Forte regular works for some kids not responding to the kids version. I've tried both with DS and my patients and the child stays asleep if it works. Also Good point to remember is if any abx is deep penetrating it can dislodge metals from their storage sites in the body. BBB crossing abx usually does that. When heavy metals are mobilized that can cause a huge sleep disturbance and painful too as they get redeposited at other sites. Adding an appropriate soaker agent like Chlorella is important and that will help. Actually Cilantro tincture 5 drops in warm water 1 hour before meals followed 30 mins later by Chlorella pyrenoidosa is very beneficial in moving the metals along for soak up by Chlorella. I didn't know this about the melatonin. We have been giving it to him about 30 min. before bedtime for about 1 year now and it has worked great. The sleep problems started before treatment but now its worse. He is on 450mg rifampin and 250 Azithro. Are these deep penetrating? ANdrea

I did call our LLMD and they mentioned keeping with it for 2 more weeks and they mentioned the time release melatonin if that doesn't work. I may try our regular pediatrican and get something stronger because at this point its really gotten out of hand. You are right, he may also be the small % of kids who have a reverse response. Thanks1

My son is waking about every 2 hours and nobody is getting any sleep. During this time he is dressing up for the day and raging. This started about 2 months ago (before Lyme treatment) but then he would only wake 1-2X night. Now its more frequent. In the past falling asleep was the problem and now staying asleep is the problem. He does have a mild apnea. We've been using melatonin spray under the tongue for about 1 year. This has worked great until 2 months ago. His LLMD prescribed Babuna and Amantilla and Relax Max plus the melatonin but nothing is working. Could the melatonin be messing with his sleep after 1 year? Could the abx/herx be making it worse? We have got to get some sleep. I can't tell if his ramp up in OCD and behaviors is due to a herx or sleep?? Any suggestions what I can try next that might KEEP him asleep?? Andrea

Hello- HOw long after beginning treatment did it rise? Which abx caused it? Andrea

How soon into treatment does the rash generally come out if it does for Bartonella? Andrea

We have been using melatonin for my 8 year old for the past year. It has helped a great deal. Recently however, he is waking a lot in the middle of the night and getting dressed for the day at 2:00am. In addition to melatonin, his LLMD recommeded: Relax Max, Amantilla and Babuna (order latter 2 from Nutramedix). He's been taking them for about 1 week and last night was the first night he slept through the majority of the night and did not have a meltdown over his clothes in the middle of the night. Good Luck. I know the midnight waking can be really tough on the entire family. Andrea

Thanks for the feedback. This is good to know! ANdrea

I am wondering if anyone uses ALKABSE by Ormed for Herxing? It was recommended for my son for herxing to flush out his system. I was told to add water (8oz), lemon juice with 1/2 tsp powder. I even added some sugar. My son won't touch it because it tastes awful. Any suggestions? Andrea

I think this may be the case to. Thanks Andrea

Hello- We started Rifampin 3 days ago with 300mg for my 8 year old son. Today we increased his dose to 450mg. About 5 hours later my son had severe abdominal pain. He was completely hunched over, saying its like a knife stabbing into him. He could not walk. I have never seen him like this-so terrifying. I took him to emergency, and they did necessary bloodwork (including for appendix) and all came back normal. About 3 1/2 hours late he jumped off the bed and said the pain is gone. He is doing fine now-THANK GOD! Has anyone had this experience with this abx? Not a good way to start our journey. I am waiting to hear back from his doctor how to proceed. Andrea

Hello- Just curious which which bands were positive via IGENEX? Andrea

Hi Everyone- I am fighting my HMO to pay for our son's Lyme treatment. I know, I know, but its worth a try. Does anyone know of any articles from the CDC that mention anything about cognitive and or mental disorders relating to Lyme I can use as evidence for my case? I have searched but could not find a thing. Their symptoms list is vague-doesn't go beyond the typical bullseye rash, fever, etc. Or is this part of their political agenda? Andrea

Glad to hear that things are going well at this point for your child. What dose of Rifampin did you use? We have 450mg. Andrea

Yes, I think we will definitely get a positive on the Bart. The purplish stretch marks have come out full view on lower back. Kathy Do these marks tend to come out after starting treatment? Andrea

Treatment plan for my son: We are starting with Rifampin at 300mg and increasing to 450mg If herxing isn't to bad then I am adding Zithromax 250mg I am giving him 100billion/day of probiotics support for sleep since he is waking at 2:00am dressing up for the day: melatonin (which really helps), Relax Max, Amantilla, and Babuna-Does anyone have experience w/any of these? I AM SO LUCKY TO HAVE ALL OF THIS SUPPORT! YOU GUYS ARE GREAT! Andrea I actually have an unopened bottle of Amantilla in my cupboard. The organizer of a local lyme group recommended it to us for sleep, but since lyme treatment, haven't had the need for it. I'm no longer giving my daughter melatonin either. She still has some issues with nightmares, but not as severe. That's great news! I'm glad that your daughter can sleep on her own now! Andrea

I'd love to. Let me know if you have anytime this weekend. I have so many questions still. Andrea