lismom

The anti-inflammatory antibiotic I'm refering to is minocycline. We're using it with rifampin for lyme and bartonella. Mino has properties that downgrade inflammatory cytokine output. Meaning, in my terms, that your immune system doesn't go into overdrive, sending more t-cells and antibodies than necessary. This antibiotic is also used in rheumatoid arthritis with good results. The longer used the better results. Its good for central nervous system chronic lyme, which my son has. Brain fog, motor tics, joint pain... Yeast is a well known conection with tics. Not for all kids with tics but for those predispositioned for it. I spent many months on the tourettes/tic board years ago when I first saw my sons tics, before he really got sick. Besides probiotics, I try to keep it in check with natural anti-fungals.

My son is on mino and rifampin. My son has lyme and bart. He has been sick for almost 3 years. It took this combo about 4 months before he turned the corner. Its amazing to see. the rifampin was key for us. I'll be honest he did herx quite badly. I'd say he herxed for all of those months. but the result in the end has been amazing. Kathy

I think you really need to look at what antibiotics you've tried and for how long. My son started as PANDAS and recently dx with lyme and bartonella. It wasn't untill my son was put on a specific anti-inflamatory antibiotic and another one that hits everywhere in the body very well. My son had at times extreme tics. I've seen them start to disappear. Our lyme treatment is working. but the antibiotics we are on are also used in other cases of chronic illness. My son also had strep, Hhv6 and mycoplasma. I truly think that trying antibiotics and maybe switching at times is not aggressive or an intrusive way to see if this may be the answer. One or two months of anything is not a good indicator if the child is chronically ill. We use fairly high dose probiotics. and when the fungus(yeast) starts to increase I can see the tics also creep back up. I have to treat that as well. I do know what it is like to see the head to toe ticcing. It has always been more uncomfortable for me. This is our situation. Kathy

Can you tell us how long she's been on this combination? It took my son 5 months to return to himself. We will be treating for probably another year. What's working for us is minocycline and rifampin and pulsing a cyst buster.

I don't put any weight on results from Quest for Bart. My son tested neg through Quest, started antibiotics at that time and got a full blown Bart rash. My son also has so so many Bart symptoms that have now started to clear after 3 months. He has lyme as well. He's on rifampin and mino. My LLMD said its more about treating months beyond the symptoms are gone, not test results.

Water is the most important detox there is. Purified water at high intake this works for most. But of course with some bodies help is needed. With my 14 yr old on lyme/bart protocal, water is all we're using. At the beginning though we used lemon. So far so good. If numbers change from bloodwork of course we would go back and use something to help.

I give the minocycline same time with rifampin. The rifampin needs to be on an empty stomach but the second minocycline I give after dinner time and don't need to worry if we ate late or he's taking it around a snack. I give probiotics twice a day if I can. The mino should be given around 10 to 12 hours apart.

A month of antibiotics is not that invasive. Even if it turned out not to be lyme. Some need that anyway to get over pneumonia. With that being said, we started out with what we thought was pneumonia. Went to a PANDAS diagnosis. Two years later were finally diagnosed with lyme/bartonella. Better safe than sorry.

My son was on allergy shots for many years when he was young. They worked wonders. Fast forward to first diagnosed PANDAS. Allergies got worse. Held back on shots tried other remedies. Nothing worked. Recently diagnosed lyme/bart. Before seeing LLMD we had started shots again. Bad idea. Son got the worse motor tics than ever. LLMD advised to not do shots until the immune system can cope and understand what to do with the allergins being injected. With lyme/bart the immune system is already over taxed and confused. We are waiting.

Trust me, if this is the most he has for a while that would be better than I've seen in 2 years. Just wanted to see if this is something others have as well.

Sometimes the strep or in our case lyme can bring out chronic fatigue. My son was so fatigued that he had to miss 3 months of school twice in 2 years. We are treating for lyme/bartonella now and seeing some improvement. This is not a disciplinary situation. Her body is just fighting and trying to recover its own way. Fatigue has played the biggest part for my son. Scared me to death the first time it happened. Luckly this last time I knew what to expect.

I'm so sorry she's been sick that long. You are working with a LLMD? Have you talked about the length of time she's been sick and how that might play into her recovery? How has she been functioning in school for the past years? Do you and your LLMD have a game plan?

I didn't think culturelle needed to be refrigerated. I buy it that way and just leave it in the cupboard. Is that wrong?

Yes. Many kids get to sick to go to school or have to back out for awhile. My son was out of school twice for 3 months each time in the last two years. We saw improvement after about 2 months on mino and rifampin for bart/lyme. It will take alot longer to fully recover though. We had tutors during that time. Barely made it but we did. Depending on how long she's been sick may determine recovery time. The kids and their immune systems are all so different there is really no set way to know. I know for me, I still have to remind myself this is for the long haul. Its been 3 months on the abx. Kathy

Yes my son's skin would be very very warm to the touch like he should have a fever but never did. It did pass. He has lyme & bart.

I just wanted to ask how often the tindimax is taken. your son may be on overload. Cyst busting seems to really increase symptoms for us. We had to change our frequency.

My son has had a sniffing tic where it sounds like he just as allergies. I believe this was from herxing. It did go away. I've seen it come back once and someone recommended acetyl-l-carnitine which seem to do the trick. I still give this for the brain health benefit.

Just saw this! so good to hear! Keeping fingers crossed! kathy

Hey, Michael. It may have been me. I live in East Amherst. Kathy

I'll give you my experience with my now 14yr old son. Up until he was six years old he had no tics. He started having eye tics and I discovered he had allergies. He went on shots and they went away completely. He was tic free for five years until 11 years old when he got sick. I ended up thinking he had PANDAS. After 2 years of not healing, he was eventually diaganosed with lyme with only 2 bands. I have seen the tics come and go. Get severe and stay mild. For him the potential for tics may be a genetic predisposition. I believe though, when his body is well, the tics will leave. Teens that have lyme also have other things their bodies are dealing with as well. Puberty adds fuel to the already burning flame of lyme.

Maybe for some but under rifampin side effects one of them is drowsiness and that is what I've seen with my son. It has actually countered a little of the bad insomnia we deal with.

My son weighs 115lb and takes 300mg twice daily. I do give it to him all at once at his evening dose of minocycline. You can give both at once when you've worked your dosing up to the twice a day. We did start with only 300mg once a day for the first two weeks. Others I've talked to do better with a split dose. I did notice that symptoms ramped up a little after taking the rifampin, thats why I'm trying it at night only. so far so good.

I'm glad you mentioned this. I have noticed the mood change next morning. It wears off by afternoon but I don't like what it does to my son. I have had to use it though because son has final exams.

My son is on minocin and rifampin. Our LLMD is not a pioneer but recovered from lyme and bart herself. We check levels every month.

My son is taking minocycline and rifampin. Herxing has calmed down 2 months in. I also have to keep reminding myself its going to be about 6 months. His stretch mark rash has grown and gotten wider in size so I know we have bart on the run...