lismom

This is a timely post. We are on month 7 of rifampin and mino. My son has been sick for approx 3 years so as long as liver is holding steady, we're waiting until the year mark to evaluate. Between lyme and bart there are flares consistently. Every week looks basically the same. I think when we are down to more monthly flare, maybe bart has gone?

SFMOM, how long were you off the omnicef before adding it back in. My son was on it with his combo for 5 months then we took it out while treating bart with other abx. I want to add omnicef back in now for more lyme attack. Its been 4 months since, can you just add a abx back in you've been on before?

Another question. Can the body improve this problem itself? I did see the chapped lips, dark circles and mild body movements when son was at his worst. Have not seen these since tx of 6 months. Can bartonella suppress the body's ability to detox well?

I have read the symptom list. We don't fit the obvious. I may have asked already, I'm sorry. Just covering bases here. Was it lack of improvement? and if so how long did you think was appropriate time. Was it linguring things after an extended amount of treatment time. Was it a long plateau period? We are only 6 months into treatment for a 5 year illness, so... Thanks, Kathy

The dosage was 600mg a day. The increase was temp. It took a day or so after stopping and it was a return to his baseline.

Thanks for the input. I think I will give quercitin a try and the eye drops. I did discuss shots with the LLMD and the recommendation is to wait further into bart/lyme treatment. The thought is because bart is an immune suppressor, the antigens would go either unrecognized and get lost. Using benadryl at night sounds ok. The SLIT would be great to try but funds are tight right now. Thanks again, Kathy

We have an increase in tics on oral vitamin D not sun. I've tried several times with the oral.

I think I've read posts from others that the typical allergy med makes pandas/lyme motor tics worse. I found this to be true years ago but haven't tried since because of all the other meds son is on. Anyone found some solid relief for this? I am able to control his bedroom but the dust at school and pollen are bothering his eyes. Also, does lyme make allergies worse? Thanks, Kathy I'd like to do shots like when he was much younger but I know his immune system is too burdened fighting everything else right now.

I just wanted to ask out of my own curiosity, and if you guys don't have the time or energy to respond I'll understand, but what is the defect that causes the protocols you and your children are going through. Is it the immune system being immature in some younger kids? Is it a defect that prevents the immune system doing what it should? Do things get stuck and not leave the body? Thanks, Kathy.

Wanted to see if anyone thought getting a typical flu would increase lyme/bart symptoms. Myself and my two girls have been sick and my son(who has lyme/bart) just got it two days ago. I thought it was the 4 week cycle, which it may be, but just wondering if symptoms get worse when fighting something additional. Oh what fun...

Justgoaway, have you ever tried a course of antibiotics? Also, Acetyl-l-carnitine has helped alot when my sons vocals waxed. Kathy

I too am sorry for your loss. The magic bullet for my son is minocycline and rifampin. 4 months of herxing and he's turned a corner. He had previously been on omnicef, zith and rifampin. The mino seemed to be the key. The bart came out full force in every way. Even the rash blew up all over his back and elsewhere. Now with things improving, the rash is receeding too. He also had high step titers for 2 years, HHV6 and mycop. I did treat the cysts during this time but have taken a break from that for now. Kathy I do feel the rifampin was key as well. It gets so deep into tissues and other places some abx can't. The anti-inflammatory properties of mino aid with the toxic overload as well as being able to cross the bbb and go deep.

We (my son and I) are on the lyme board now but we started here many years ago. Before my son got lyme/bartonella, he was being treated for allergies with shots. He manifested minor ticcing which did resolved after being treated for allergies to grass, weeds, trees, cat and dog. This testing was requested by our peds through an allergist. Most insurance will cover. Shots were the only thing that worked for him after trying everything else available. Dairy is known as a cause for vocal tics sometimes so that might be an easy thing to eliminate now and see what a week or two can bring. Years later my son got ill. I came to the conclusion that it was PANDAS which eventually got diagnosed as lyme with a co-infection of bartonella. He presented with pneumonia type illness and motor tics. If you have a pediatrician that will work with you it will make all the difference. Some kids just have a ticcing disorder. Others have a reason behind it. If you decide to eliminate potential causes, make a plan with the simplest things first. Allergies, food sensitivities, strep(this is the aso & Anti-Dnase b tests.) Your pediatrician can order these. Viruses, and lastly lyme(which is through Igenex. This is out of pocket. Kathy

Yes, I was close to using valium a couple months ago! Is the tic the worst symptom right now? how are the other issues he was having. We were in a perpetual herx for over 16 weeks! Are you using something for cysts?

I live in Buffalo. I'm only aware of one enviromental doctor here familiar with lyme but not versed in it. Myself and others were not able to find someone we were confident with here. I may PM for the names. Plattsburgh is about 6 hours from Rochester. But Buffalo is only around 45 min. So it is very close.

I live in Buffalo Ny and we had to travel to Albany Ny. From Rochester that would be around 3 hours away. If you want that doctor just PM me. I couldn't find anyone else closer. Kathy

Your so right. My son's tics are very minimal now but probably wouldn't have any if it weren't for allergies. Cats, dogs, grass, trees, weeds... The problem is with lyme and bart the immune system is effected so that it doesn't know how to use meds or shots. We have to wait untill lyme and bart are gone (well for the most part gone) to treat allergies. I was told the immune system is overtaxed and/or not functioning at a degree to know what to do correctly. But if meds work for you, which I hope they do, lets us know, would like to know your finding. Kathy p.s. I don't know if you remember talking, but my son is doing well at this time!

I just wanted to say that my sons tics didn't go away until we did allergy shots. We tried all the pills and sprays. It took a couple months but the tics did receed. You may want to investigate allergies further. If after that you don't find relief an elimination diet could help. Its frustrating because solutions and results can be time consuming, but you could make a game plan and take each process as it comes. For those of us that have gone through it all, I know the feeling of wanting to know right now how to help. But maybe decide what is the easiest and more obvious things to start with and work down the list. Diet, allergies, viruses, strep... Try not to let it overwhelm you. Kathy

Pex only replaces blood. Lyme and co-infections hide in tissue, organs and places that PEX wouldn't be able to touch. That's why it wouldn't last. I could see it relieving some immediate symptoms and maybe someone who's infection hasn't gotten the oportunity to go deeper.

I think your on the right path. This path is not always straight. My son is 14 now and we have been at this for 3 years. It wasn't untill only four months ago did our path take a turn in the right direction. My son had been on aug, zith, ceftin, and while some slightly helped, for the most part he remained the same. We found the right abx cocktail that worked for him. He had dibilitating tics, fatigue, joint pain and brain fog. He has turned a corner after a grueling and sometimes unbearable 4 month herx. We have at least another year to go on this path. My thought would be to discuss the other type of antibiotics and go slower with the cyst busting drugs. So many on here say slow and steady wins this race. Its so true. He will herx. It will likely get worse before better. The worst was hard to watch most days. I told myself if I don't see improvement in 6 months I'm doing PEX. I was keeping it my back pocket. Zithromax for us just sort of kept things at bay for a while when I thought my son had PANDAS. Augmentin did nothing and only gave him the runs. You may need to look into a combo that goes deeper and does a better job. Just a thought. Kathy

When starting rifampin we were told to take 300mg once a day for the first week and work up to more the following week. Maybe 3 days is not slow enough? Just a thought. Kathy

We're on 600mg. My son is 14.

yes, the marks exploded after we started treatment. Rifampin has made all the difference for us with improvement on the worst symptoms my son had. It took a good 4 months and I expect quite a few more. kathy

This is the tic my son had that ended up being related to allergies. I had him tested, we ended up doing shots and the tics did resolve. Sometimes allergies show up differently than the traditional way. Sometimes changing diet can help too. Kathy