LNN

I was googling abx pulsing and came across this post from last year. Skip the original post and scroll down to the first response from the moderator. There's a long list of links you can follow on a variety of lyme topics. http://www.mdjunction.com/forums/lyme-disease-support-forums/medicine-treatments/1232807-question-about-antibiotic-pulsing

This might help... http://breakingnews.ewg.org/2011sunscreen/ But you'll see that they don't seem to have an issue with the titanium.

I have to agree with those who say as a general rule, not a good idea, but in certain circumstances, for limited duration, it can be warranted. Being able to breath is certainly more important than avoiding steroids at all costs. In my personal experience, we used steroid tapers (30 days) twice before we know about lyme and I have no regrets. The Pandas flair was just as debilitating as any temporary gain we may have given the bacteria. Sometimes you do what you need to, picking the lesser of two evils. Now, I would not turn to prednisone unless things were extreme, and I do agree they should be more of a last resort or very short term option. But knowing you just completed a course, I wouldn't beat yourself up about it.

PMd you

I went to a lyme symposium last weekend where they discussed efforts to create a reliable culture test - just like the culture tests used to diagnose strep. Back in the 80's, Alan MacDonald used to culture spirochetes in his lab (which was his basement). But he apparently never published how he made the culture and tinkered with it over the years. Subsequent efforts to develop a medium that allows spirochetes to be cultured have been elusive. Supposedly, a commercial test may be available within a year, but nothing specific could be shared. It would be a great breakthrough to end the controversy around chronic lyme. Not to be too cynical, but I'll get excited after it's real. So here's hoping...

I think I'd do a lot of reading up on detox before you start getting aggressive with abx, given the severity of your daughter's response to abx. You might also want to get input on other LLMDs. Dr J is rightfully recognized as a the pre-eminent lyme doctor and has probably seen it all. But there are two things about his approach that may not be best suited for your situation - first, (and this is only my understanding), he doesn't do much detox, feeling that kids bodies naturally detox better than adults. That may not be the case for your daughter. Second, he only sees patients every 2-3 months. In the beginning, I'm guessing your daughter is going to need much more frequent monitoring. So while you wait for your Dr J appt, you may want to work with someone who's known for their detox approach. Some doctors also consider "pulsing" abx instead of giving them every day. That may be another option to consider.

Bactrim is very cheap. About $8/mo or less. If you have a pharmacy that offers free antibiotics (usually they mean amoxicillin, not the expensive ones), bactrim is also included. Also, call your local costco pharmacy. My DS is on liquid omnicef (liquid is always way more expensive - and we haven't yet met our high deductible). It was about $100 less at costco. The zith was also much cheaper. Even if you have to pay $50/yr for membership, you can save significant money.

From what I understand about lyme, treating it with anything for 2 years is going to become ineffective. So it's likely time for a change. But that said, our LLMD was also hesitant to stop the augmentin that DS had been on for over a year, especially as we were heading into the winter months. So he kept the augmentin, but added two other abx for the bartonella/lyme. Saw great results. Then at 6 months when DS started to stall, we dropped the augmentin but added omnicef, which also works well for lyme and strep. So we didn't lose any strep coverage but we did gain in that we saw big herxing, indicating we were hitting the lyme that had become impervious to the augmentin.(in our case, the herx itself caused issues, but that's another post). Some here have continued to be plagued by strep even while in 3-4 abx (I believe that includes zith and/or augmentin). Others have kids that seem well protected, given the assortment of other things they're taking. Like everything, it will be an individual thing. But I think there are options that should cover you for both.

Wilma, I know you've been through so much and just when you start to get your arms around Pandas, to have bartonella thrown at you must feel like a punch in the stomach. But it does make sense from what I can gather and from what others have said. I know your daughter has had trouble with bactrim, which is commonly used for bartonella. You've also described other times when your daughter hasn't reacted the way it was expected to many drugs and treatments. So I want to mention something just for you to think about and possibly explore before you go any further with any treatment... 25% of the population has a gene variant - HLA DR4 - that makes it very difficult for their bodies to properly rid themselves of the toxins that are produced when bacteria are killed. This gene variant, and the high number of people who carry it, is the reason the Lyme vaccine was pulled from the market after only 2 yrs. Too many people had adverse immune reactions because they carried this gene (I can't begin to explain why - just repeating what I learned and probably screwing up the explanation). IF your daughter has this gene variant, it could be part of the explanation for why her body struggles to rid itself of toxins produced when she takes antibiotics. Also, everyone produces a hormone - MSH (melanocyte stimulating hormone) that is a key hormone in controlling inflammation (a huge issue in Pandas and many if not all autoimmune diseases). Lyme patients often have very low MSH levels, which might cause large amounts of inflammation in your daughter and worsen her pandas and/or bartonella symptoms. I don't fully understand it well enough, but these two factors could be part of the explanation of why some lyme kids (and maybe even Pandas kids) do well with IVIG and some don't. (thinking that if IVIG is a mega-assault on the lyme, you're going to get a major herx and if your body can't shed the toxins, you end up in a worse place for longer than expected). I don't think Dr B uses either of these tests, but he and/or Smith may very well be knowledgeable about them and I would expect many of the LLMDs use them. You may want to ask them to run these two tests (HLA and MSH) before you make any treatment decisions (I would wait for some period of time after stopping the prednisone, as that could effect the MSH results). It could help you learn about how well - or poorly - your daughter is able to handle aggressive treatments. (tests must apparently be run by Labcorp and not other labs to get meaningful results) This may do a better job of explaining: http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html I hope this is a positive turning point for you!

Wow - thanks for sharing. While it may be too late to help our kids, good to know that our grandkids may have a better outlook. Have you shared with the Pandas board? I know a few parents who'd be happy to read this one.

Talk about timing - I just got this email from the company we used to store DS's cord blood. Not that Pandas would fit into the trial, but it's exciting that they're looking at the brain... Dear Families of Cord Blood Registry, Earlier this year, The University of Texas Health Science Center at Houston (UTHealth) launched an FDA-regulated trial looking at cord blood stem cells in the treatment of pediatric traumatic brain injury (TBI). The study is being performed in partnership with Children's Memorial Hospital, UTHealth's major children's teaching hospital. Ten children, ages 18 months to 17 years, who have access to their own cord blood stem cells at CBR and who have suffered a recent TBI (within the last 6-18 months) will be enrolled in the study. To ensure consistency in cord blood stem cell processing, storage and release for infusion, CBR is the only stem cell bank participating in this study. While the study is unique to CBR clients, it is also the first of its kind. According to Dr. Charles Cox, professor and chief of Pediatric Trauma at the UTHealth Medical School, "This is the first clinical trial authorized by the FDA to evaluate the safety of autologous cord blood stem cells in the treatment of TBI." If you have a child who meets the study criteria, and are interested in learning more about participation, click here and submit your information. CBR is participating in a growing number of clinical trials focusing on the use of a child's own cord blood stem cells to help treat pediatric brain injury. We are committed to keeping you informed about potential new uses for cord blood stem cells and are excited to help advance this important clinical work. For more information about the trials, please visit the CBR Center for Regenerative Medicine. Sincerely, Heather Brown, M.S., C.G.C. Vice President, Scientific & Medical Affairs Cord Blood Registry

I think there can be several benefits for tracking symptoms. First, patterns might indicate medical cause, no pattern might indicate normal kid behaviors - the things that make all parents pull their hair out. Second, patterns help an LLMD clinically diagnose. And third, I do think patterns can help if you try pulsing. I don't know that pulsing is widely practiced, except for cyst busting. And I always believed that the reason for that pulse was to give the body a break from herxing (could be way wrong, but I always think of cysts as dormant, and not having a "life cycle" in that they're in hibernation.) The pulsing the article talked about was to erode biofilms, which do have a life cycle (but I don't think the length of that life cycle is known yet), and I don't know what the current thinking is among the lyme docs. It's not something I've seen much talk about, but then, I'm only now just digging into the science of lyme. Someone on the Pandas forum said their LLMD used pulsing for abx other than cyst busting. E.g. omnicef M/W/F, other abx other days... Definitely has my interest piqued...zith every day, omnicef every 2-3 days...maybe a stronger dose one week a month...will be a big portion of my next chat with our doctor. Anyone else have any thoughts or experiences?

From what I read, the timing of pulsing depends somewhat on the life cycle of the particular bacteria. You want to hit it as it's replicating. Stopping an abx lets the bacteria think the coast is clear to reproduce, then when it does, you hit with with abx again and wipe out the emerging generation. As for dosing, haven't gotten that for in my research. In lyme, I've come across two strategies, using tindamax or flagyl - both cyst busters for lyme. Some people go on it for weeks on and weeks off at a time and some go on for 2-3 days, then off for 4 days. But it may depend on clinical symptoms and how much of a herx the body can stand. This article talks about lots of diseases, so no specific recommendations. But it does mention that chronic disease often depletes the body's proper use of vitamin D and discusses how this can make the body immune deficient, unable to mop up bacteria that remain once abx are stopped. Mentions Vit D supplementation and prednisone as incomplete solutions. None of this should be tried without input from your treating doctor, but food for thought. It's a long article, but if you can wade through it, it mentions a lot of topics touched on in this forum.

Just noticed this morning that thanks to a large donation, ACN has raised over 75% of it's goal - only $1075 left to go! So if this is something you planned to do but it fell by the wayside, now would be a great time to do whatever you can to show your support.

Just noticed this morning that thanks to a large donation, ACN has raised over 75% of it's goal - only $1075 left to go! So if this is something you planned to do but it fell by the wayside, now would be a great time to do whatever you can to show your support.

Just noticed this morning that thanks to a large donation, ACN has raised over 75% of it's goal - only $1075 left to go! So if this is something you planned to do but it fell by the wayside, now would be a great time to do whatever you can to show your support.

Just noticed this morning that thanks to a large donation, ACN has raised over 75% of it's goal - only $1075 left to go! So if this is something you planned to do but it fell by the wayside, now would be a great time to do whatever you can to show your support.

Laura, I know this has got to be killing her - and you. I'm so sorry....I don't know if it has any merit, but I just posted a link to a site that talks about biofilms. It's really really long, but at the middle/end, it talks about pulsing abx and the benefits. Toward the end of the page, it starts to advocate the Marshal Protocol, which I don't know much about. But it gave me a new perspective on treatment options. I'm certain your LLMD is aware of the protocol and may have reasons for or against. But it's food for thought (not necessarily the protocol but the pulsing idea) if what you've been doing is getting you nowhere. If you can stand it, maybe consider a rotation plan. Not sure I'd experiment on my own, but might be worth asking your LLMD. You're in my thoughts, Laura

I thought the same thing about your son when I read it - and about someone else's Pandas daughter when I read about ear tubes and someone else's son whose Pandas flairs are closely related to periodontal disease. It's one of those articles that resonates. I don't know much about the Marshal Protocol, other than coming across it once before and walking away with the impression it was controversial. But 3 years into this, controversy no longer bothers me the way it once did. Have probably found my pet research topic for the week (BTW - browse around the rest of this site - other pages also have some interesting tidbits about Vitamin D, prednisone, herxing...)

When my (Pandas/lyme) son was born, we banked his cord blood. I searched for anyone who might have a vein of research that could help, but came up empty. My impression is that funding is so difficult already, most are focused on using stem cells to treat diseases that are 1) fairly well understood, 2)effect a large number of people and 3)aren't controversial. I assume most universities and grant doors aren't going to write large checks to use an emerging science to treat a disease not everyone can agree exists. Not that things don't change quickly. But I never found anything. The reason we banked his blood was as insurance. Heaven forbid he should dive into a swimming pool and become paralyzed or develop some disorder that is treatable with stem cells...So I don't regret the decision. But so far, no reason to call the bank and tell them to start thawing.

I've been trying to understand biofilms - the slime that forms around colonies of bacteria. It's a big issue in lyme because once bacteria forms a biofilm, you can hit it with 1,000 times a normal dose of abx and not make a dent. I found this link and though some of my geek Pandas friends might find it interesting. It's VERY long. But toward the middle, it starts to talk about how pulsing antibiotics, rather than taking lots and lots every day, can erode away a biofilm. For anyone who may be struggling with any chronic infection, some good info... http://bacteriality.com/2008/05/26/biofilm/

Trying to understand biofilms and I found this - it's very very long - so read over a cup of coffee or when you have a solid chunk of time. The beginning is about biofilms in general. The middle gets to antibiotics and toward the end (haven't finished reading all of it) it talks about why you should pulse abx to kill biofilms. Some real food for thought... http://bacteriality.com/2008/05/26/biofilm/

Thanks everyone for the great conversation on the Biotoxin Pathway. As the ideas have cooked over the weekend, and I watched DS settle down considerably by focusing on controlling inflammation (aleve) and binding (charcoal) and drainage... I'm feeling much better with the theory that when we got aggressive with abx treatment. it resulted in a strong herx and his body couldn't detox fast enough (just did blood draw today for HLA DR4 and MSH). The resulting inflammation and toxins likely triggered a Pandas-like flair. Either or both are messing with his brain chemistry. It's unbelievable to watch how he changes 30 minutes after an aleve, just as it did all last summer while we weathered 10 horrible weeks post-IVIG. So this has me wondering what to do if I'm right (lab results in 2-3 weeks, LLMD appt in 4 weeks). I'm guessing we'll focus on detox, maybe some heavy metals, things to clear drainage pathways. I will not resume tindamax as originally planned. Otherwise, it'll just clog the pipes even more. My question is - while we down shift, is there a way to hold the enemy at bay? I mean, these are multiplying bacteria. If you lighten up, you give them a chance to regroup and repopulate. Do you think that keeping the "right" amount of abx in the system can keep the spirochetes in a cyst form (which they form in a hostile environment) but prevent too many from reverting into spirochete form where they can become active again? I assume cyst form doesn't reproduce and my understanding is that biofilms only release spirochetes at a certain stage of maturity (don't know if biofilms could be prevented from forming and/or releasing spirochetes if there were enough abx floating around). So can you go into a holding pattern, using enough abx to keep the buggers dormant in cyst form, while the body detoxed/drained/healed. Then with a stronger body, go back to aggressive steps, such as cyst busting and then eventually biofilm busting...Does this make sense? Anyone have any thoughts? Obviously, I'll run this by our LLMD next month, but you all know I sleep better when I have a plan.

We used it for about 10 months with some success. It didn't get rid of everything, but it made it more manageable. DS only had OCD issues when he was in really bad episodes. He's primarily a ticcer. We used to to manage his anxiety and never dosed high enough to try to address the OCD. (We built up to 5g @ 50 lbs over 6 weeks but probably could have built up a little quicker). But it did help with the anxiety. We stopped using it when abx and a T&A put him into remission for a time. When DS had subsequent episodes, Cognitive Behavior tools kept his anxiety at bay and we didn't feel the need to use inositol again. Here's some reading that may be helpful a. http://en.wikipedia.org/wiki/Inositol b. http://www.nutritionj.com/content/7/1/2 c. http://www.naturaladd.com/resources/articles/natural.html d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html e. http://findarticles.com/p/articles/mi_m0ISW/is_255/ai_n6211958/ One of them - don't recall which - suggests doses to build up to over 6 weeks, but they're for an adult. So you need to do some math to figure out a schedule for a child. For a time, I used it as well, to help me cope with the stress. It did take the edge off but I got lazy and stopped when DS stopped.

Wilma, I hesitate to give you more to read and confuse the issue, but your comment made me want to pass this along - from the lyme forum... http://lymelighters.org/uploads/012610_KPU_Forsgren_explore_18-6.pdf It discusses a condition known as KPU (or sometimes HPU) an excerpt from the paper: HPLs bind to zinc, biotin, manganese, vitamin B6, arachidonic acid and other important compounds and lead to a significant depletion of these substances in the body. later on... Once zinc is reintroduced into the body, heavy metals are displaced from these sites. Zinc is once again highly supportive of human health. However, the patient now has dislodged heavy metals circulating throughout the body. These are either competing for the already overtaxed detoxification pathways or are redistributed to places where they may be more harmful. For this reason, it is wise to have detoxification and binding agents on board at all times while implementing the HPU protocol.... Supplementing zinc liberates 2-valent metals such as Mercury, Cadmium, Aluminum, and Lead. Patients express symptoms of acute heavy metal toxicity, which have to be addressed. At this stage of the protocol, the patient generally will require treatments addressed at heavy metal detoxification The article also discusses B6 and other minerals and vitamins in detail. Too much to post here. I'm not suggesting you try to figure this out yourself. But maybe ask Smith about it. Your daughter's severe reaction to these supplements doesn't necessarily mean she has enough of them. It could be a detox issue or a case of a chronic illness causing a cascade of system dysfunctions.