LNN

Just a reminder to all that ACN has kicked off it's fund raising efforts. I know money is tight for many but I know Shelia would really appreciate any sized donation, whether it be a one time donation or smaller monthly contributions. Anything you can do to help makes a difference.

When we did IVIG last summer, we didn't know DS had lyme et al. So he had a horrible 10 weeks post-IVIG. I now think a large part of that could have been herx-related and may have been much milder had we used an aggressive detox strategy. But it's just speculation. Even if we could do it again knowing what we know now, I don't think we'd turn to IVIG as part of our treatment plan, just because it was hard to manage the effects and I'm not sure it did more good than we've gained on the correct combo of abx (plus our insurance only covered 50%). But I know others who are making it part of their regular treatment plan (w/Dr J's ok) and feel it's the right path for them. If you hadn't come from a Pandas perspective and had just come to lyme without that history, you might ask yourself how you'd feel about IVIG as a lyme treatment. I think sometimes the culture of Pandas changes the way we view IVIG and makes us feel like we "should" do it, even after our kid's diagnosis has changed. However, if you lean that way more because you feel it can pack a bigger punch than abx, esp. if DS has gut issues, and it's affordable before July 1st but out of reach after, then maybe it's worth a try. If you go that route, I'd read up on a lot of detox options and have that plan in place. I'm glad the zith has given you some relief. Is there a reason DS is only on one abx at the moment?

There is no single or universal answer to any of your questions. All of the treatments used for Pandas have pros and cons. None are risk free, none come with guarantees. Some parents prefer to be aggressive with IVIG early on and others prefer to start off with the less invasive treatments, moving to something else only if a milder treatment fails. It's all very personal. As a generalization, I think your assessment of each doctor's feelings are valid. Which one to see depends on which one you feel more closely matches your own approach. As for IVIG and insurance coverage, that depends on your insurance and in part, on your doctor. Some doctors seem to have better success than others on appeals and on building a case for coverage. If you pay out of pocket, I believe you're looking at $8-15K per treatment depending on where it's done and how much your child weighs. How many? That again depends on your doctor - most doctors say one treatment is necessary, with some kids possibly needing a second treatment months later. One doctor feels multiple IVIGs should be done 8 weeks apart. At this point in the evolution of everyone's knowledge of the disease, no one knows the "right" answer. I think you'll get many opinions and personal experiences on all of these questions. However, I think you will get universal agreement on one point - make certain your child has Pandas. Even something as common as antibiotics can be more or less successful if you use an antibiotic that's generally effective against strep but your child is actually infected with a different bacteria, such as mycoplasma or one of the bacterias or parasites commonly carried by ticks. Or if your child's behaviors are instead triggered by yeast, then any antibiotic can backfire on you. The key to any successful war campaign hinges on making sure you're fighting the right enemy. Sorry this isn't more black and white (no pun intended). But being methodical and having good data is just as important as which doctor or which treatment. Best of luck with your decision.

http://lymebook.com/blog/the-recovery-process/herx-reactions/herx-reaction-fundamentals/ DS started tindamax this weekend and did pretty well until the last dose this morning. Then crashed about 2 hrs later. He spent the day on the couch with a fever, moaning, in major pain. I found this link and made DH read it (he usually prefers I give him the reader's digest version, but it was short enough that he read it - and now understands what we're doing and why much better. A little light bulb...thought it might help a few other spouses...

We've seen significant behavioral changes (good and bad) in both kids within 24 hrs of starting or stopping an abx. You just have to trust your gut on this. If you're not sure it's lyme, and she's good on just augmentin, maybe enjoy the moment and stay watchful while you wait for the Igenex results. Realize that many of our kids were "classic" Pandas who didn't end up better. I know the doctor in NJ recognizes lyme as a PITANDS trigger, but I'm not sure he's seen how closely it can mimic Pandas symptoms. But then again, the parents on the lyme forum have one bias and the parents on the Pandas forum have another. Take all of our input for whatever it's worth. From your other post, it does sound like the combo of the two abx was a herx and might be worth going back to, with some detox added (look into milk thistle, alpha lipoic acid, some other recent posts give some other ideas). If you feel your family needs a break, staying on just augmentin for a few weeks may help you all recharge. If she starts to slip, you can always add the zith back. Glad you have an upcoming appt with Dr J. after you get the lab results back. Hopefully things will be clearer in a few weeks

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Jodie, anything you'd rec. for kidneys? I've read a bit on burbur, but am already having a hard time getting a liquid herb (A-Bart) into DS and can't see adding a second one. Any other ideas? Thanks Laura

I can only talk about personal experience. I only stumbled on MT last Friday - so by no means an expert. I found this http://books.google.com/books?id=J4TFtQeHkQAC&printsec=frontcover&dq=lyme&hl=en&ei=MSuWTdzaIaaJ0QG77r2FDA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDsQ6AEwAA#v=onepage&q=milk%20thistle&f=false and was dreading a bad weekend of herx stuff, having just endured a 30 min melt down where DS was fixated on the idea of getting in the car to buy a Nintendo DS N-O-W even tho he'd only saved $100 toward one. Hadn't seen that kind of idea fixation and emotion in a long time. In addition, DS had also been doing this punching compulsion where he punches his bladder to "check" if he needs to pee - something that showed up last summer with urinary frequency post-IVIG (which I now view as a very long herx). It went away last Oct when we started treatment for bartonella. But it reappeared a few weeks ago and got a lot worse after starting omnicef. He also started doing this writhing, back arching compulsion. A week of MT and these things are way way down. Is now going as long as an hour without any compulsion. So if the OCD behaviors are triggered by a bacteria, or some sort of reaction to a bacteria, and an abx causes a die off that amplifies the OCD, then detox, like MT, could conceivably help with the OCD. Not like I'd get on an OCD forum and proclaim that MT can help OCD the same way inositol can. But for our kids...maybe. It seems to have helped in our house (we've been giving glutathione for months, which I also thinks helps, but the glutathione alone didn't seem to help with the recent herx stuff in the same way the MT did. DS feels the glutathione was more helpful for brain fog) Maybe give it a try and let me know...

I always thought it was more common to switch abx after a period of time rather than stay on the same combo for a year. What does your dr say when you ask about changes? Funny you talk about all the other stuff as Pandas and not lyme. After 6 months with no OCD, no obsessions of getting stuck on an idea, months of decent handwriting - last week in a bad herx, all this came back for DS. And yet, not even a chance of strep or exposure. Increased our detox efforts over the weekend and much of it went away again. So what I've always considered "Pandas" symptoms might actually be 80-90% TBI symptoms - maybe everything except the piano-playing fingers and maybe - maybe - the echolalia and tics that went away after pex. To me, it's all just one brown mud puddle now. I couldn't begin to say what's "just" Pandas and what's "just" lyme. The more I learn, the stupider I feel.

Hmmm...never thought about it. I always think about inositol in terms of OCD and since starting lyme/bartonella treatment, the OCD has gone away, so our bottle is in the way back of the cabinet now. Might be worth looking into (just that DS responded to the MT within hours, so it's my current "love"). I thought about posting the MT stuff on the Pandas forum after I learned about it last week, but I generally think of MT in terms of detox and clearing toxins from die off, rather than as an anti-inflammatory (not that it isn't - I just never thought of it that way). In Pandas, the focus seems more on the aftermath after the infection is cleared. Not that some wouldn't benefit, either during an active infection or myco or maybe even after IVIG, or as a way to protect the liver against all the motrin. But since lyme is such a polarizing topic, I never posted anything over there.

drugstore.com Are there any interactions with Milk thistle? Currently, the only known drug interaction with milk thistle is metronidazole (Flagyl). Check the milk thistle thread - I posted an article that lists other meds effected by milk thistle. MT by itself seems to have few side effects, but apparently can change the rate at which other meds are metabolized, causing either too little or too much of a med to stay in your system beyond the normally expected half-life. Flagyl is listed, yet my LLMD said it's ok to take with tindamax. So I would definitely run plans by your doctor.

A Herxheimer reaction was originally used to describe a reaction caused by the release of biotoxins by dying spirochete bacteria - initially observed for syphilis and then expanded to other spirochetes, including lyme. But you often see it used in a more general sense on the forums to describe any reaction to a bacterial die-off (the scarletina rash known as scarlet fever is caused by dying strep bacteria releasing toxins that cause the rash). In a herx reaction, you can see an escalation of the very symptoms you're trying to treat, so it's hard to determine if what you're seeing is a herx or if the treatment you've started is actually being ineffective. One "test" is to stop treatment for a day or two and see if symptoms start to resolve. If they do, then it was probably a herx. If you stay on the treatment without stopping, herxes "generally" last a few days to a few weeks, tho every individual is different. Because a herx is caused by a build up of toxins, the focus turns to detox as a way to rid the body of the toxins. But if that doesn't provide relief and symptoms are still causing a lot of distress, another option is to back off on the antibiotic or herb that's being used - either a lower dose or a pulse treatment where you take the treatment for a few days, then give the body a few days to clear toxins, then treatment again... As for baths, I haven't come across a protocol. The directions on most containers says to add something like a cup to bath water. We've always just poured a generous amount in. I haven't found conclusive research to say whether these help, but a warm bath is comforting when you feel poorly, so in that sense, I suppose it's therapeutic. Personally, we've found other detox options more helpful.

Yes, that is my question. I've read that Burbur is also a decent liver detox as well as kidneys, but seems to come in drops. DD6 will not eat or drink any regular food that "looks" or "smells" funny - so the idea of getting her to drink anything with herbal drops is pretty out of the question. Takes pills no problem. Will look into SAMe - thanks.

Followed up with my LLMD this morning. Said it was ok for DS to take milk thistle while on pulse tindamax. Which is a big relief. After being part of this thread yesterday, I didn't give DS milk thistle last night and this morning he asked to stay home b/c his back pain was so bad. So he's been on the couch all day with the heating pad and laptop. Not sure if I can attribute it solely to milk thistle. But will happily add it back into our schedule. For anyone else, I'd still check with your own docs. Guessing milk thistle can interact with other meds and should probably be re-evaluated every time meds are changed. Still looking for an alternative for DD, who's allergic to ragweed. If anyone comes across something, please let me know.

Our approach is to try detox first and slug through a herx. Up until now, herxes in our house have only lasted a few days (tho we switched to omnicef 2 weeks ago and things got bad and are only now calming down). But if things start to get hard for the family to manage, then other options, like backing down on med dosage, would be something to add to your list of questions for your doctor. It does sound like you have reason to be hopeful. The de-contamination is huge! Rages are certainly part of DS's herx symptoms, but thankfully they're generally brief - feels like he has PMS rather than the psychotic rages we once endured. I'm with you on the milk thistle. Works great for DS - within hours. But DD is highly allergic to ragweed and other pollens. So I'm on the hunt for alternatives for her. For now, she takes glutathione but I'll be asking about adding something else at our next appt. Seeing blips of OCD fairies that concern me. I'm not sure you can get glutathione except through a doctor, but you can get alpha-lipoic acid (ALA), which is a pre-cursor to glutathione. Water, drinks that change the body's PH balance (haven't done much research here), maybe others can chime in on this. On bad days, we've used activated charcoal to bind to toxins already in the gut, but you need to take it away from abx and it doesn't help detox the liver. I've come across burbur mentioned as a detox, but haven't looked into it yet. Mayo Clinic, Columbia Univ and U of MD have web sites that evaluate herbs from a western/scientific perspective. You can check there (in your spare time). You can also offer massages and heating pads - if nothing else, they make the kids feel pampered. As for probiotics, like you see on the Pandas forum, lots of varying opinions for brands and quantities. The doctor you settle on may have preferences. My only advice would be to use something that packs a lot into one pill. The further you get into treatment, the more pills/herbs/supplements seem to creep into your schedule. When we started treatment, our LLMD suggested we switch from a children's multi-vitamin to juice plus, feeling it was more 'natural". But that meant 4 vitamin capsules a day, on top of 8-10 other pills. So I'm alternating every other day, and using a regular mutli-vitamin on off days. It just gets crazy. Three days and she can touch stuff? Big hugs and cheers for her!! I hope it continues!

Lismom- just found this... http://www.hcvadvocate.org/hepatitis/hepC/mthistle.html Researchers at the University of Pittsburgh have suspected that milk thistle can slow down or reduce the activity of enzymes in the liver. What does this have to do with HIV? you might ask. Well, enzymes in the liver break down many of the substances that we eat and drink, including medications. If the activity of these enzymes are reduced, then drugs remain in the blood longer than they otherwise might. This could lead to having higher-than-expected levels of drugs in the body, causing side effects or intensifying already-existing side effects. Indeed, in recent experiments using milk thistle and human liver cells, the researchers found that relatively small concentrations of milk thistle did significantly slow down the activity of the liver enzyme CYP3A4 by 50% to 100%. Many medications taken by people with HIV/AIDS (PHAs) - such as protease inhibitors and non-nukes - are processed by this liver enzyme. If milk thistle is taken by someone using protease inhibitors or non-nukes, it has the potential to raise levels of these drugs, causing unpleasant or even dangerous side effects. Below is a short list of some other medications that are processed through the CYP3A4 enzyme. Levels of these medications may increase if taken by people who are also using milk thistle. This list is not exhaustive: * methadone * heart drugs - Tambocor (flecainide), Rythmol (propafenone) * antibiotics - erythromycin, rifampin * anti-seizure drugs - carbamazepine (Tegretol) * antidepressants - St. John's wort, Zyban/Wellbutrin (bupropion), Paxil (paroxetine), Prozac (fluoxetine), Luvox (fluvoxetine) Serzone (nefazodone), Zoloft (sertraline), Effexor (venlafaxine) * antihistamines - Hismanal (astemizole), Seldane (terfenadine) * antifungals - itraconazole (Sporanox), Ketoconazole (Nizoral) * gastrointestinal motility agents - Prepulsid (Cisapride) * ergot drugs - Ergonovine, Ergomar (ergotamine) * anti-psychotics - Clozaril (clozapine), Orap (pimozide) * sedatives/sleeping pills - Ambien (zolpidem), Halcion (triazolam), Versed (midazolam) * lipid-lowering drugs (statins) - Lescol (fluvastatin), Mevacor (lovastatin), Pravachol (pravastatin) and Zocor (simvastatin), Baycol (cerivastatin) * transplant drugs - cyclosporine (Neoral, Sandimmune), ProGraf (tacrolimus) Milk thistle also has the potential to lower levels of the following drugs: * anti-parasite drugs - Mepron (atovaquone) * sedatives/sleeping pills - Ativan (lorazepam) * hormones - estrogen Still researching...but isn't your DS on rifampin? Between that and the ragweed allergy, MT may not be a good match for him. Sounds like a call to your prescribing doc is in order - no family should have to suffer this much in the name of getting well...

Your husband is right!! Wow, you're good! I hope your school district is cooperative. If not, they'd better budget for iron-clad underwear the year your DS arrives in kindergarten - they're gonna need it!

Lismom - I took note of the ragweed thing b/c my daughter, my other lyme kid, is allergic. We give her glutathione daily, but she has blips of behavior and I'm looking for something additional. If I come across something, I'll let you know...

I am replying mostly so you can look at my membership date and have company. Have had similar conversations with my DS8 - don't worry, honey, we'll go to the hospital (for pex) and you'll get better. Don't worry honey, we'll do 2 days of IVIG and you'll get better. Don't worry, honey, now your disease is called lyme and if you take these 10 pills every day, you'll get better (oh, but you'll feel like crap for about a year or so first). Sometimes I can't believe my family continues to believe in me and doesn't just lock me up instead - lord knows it would be cheaper!! As for Steven, look at the bright side - 1 - you can tease her mercilessly about this in a few years and 2 - he's much safer than having a crush on the boy across the street!

Thanks for this! Started the MT last weekend when DS was really bad off and haven't called the LLMD to verify it was ok. We're due to start tindamax this weekend. Wonder if it's ok to take in the 5 days between pulses to help clear up the die off? Will have to call tomorrow!

We saw very quick relief from it. But...you aren't supposed to take milk thistle if you're allergic to ragweed (they're related). So my first question is whether your child could be allergic to ragweed? (which I assumed would trigger a respiratory/allergic reaction but I suppose you could see behavioral?) Wish I had words or wisdom to share. Just push fluids, BMs, and anti-inflammatories. Stay strong...

Kara, Knowing from your Pandas posts that you have other things you've looked into, and since you might be looking at travel if your child does have lyme, I think I'd suggest two things at once. 1. Assuming your DAN is willing to order an Igenex test, I'd email Igenex (go to the "contact us" tab on their site and request a test kit) and have your local doctor sign the upper right portion of the order slip that comes with the kit. It's a financial decision as to whether you order just the basic lyme panel or a test that also looks for co-infections (babesia, bartonella, et al). Although you could have a co-infection and not lyme, it's more common to have both. Because money was an issue, we opted to just do the basic panel. We then found an LLMD who tested for co-infections using a lab that accepts insurance. Note - although Igenex requires that you pay them up front and they do not accept insurance, they do send you the form you need, with diagnostic codes, so you can submit your own claim for reimbursement from your ins. co. You may not get reimbursed 100%, but you may get a portion of it covered. 2. It takes about 2 weeks to get the Igenex results back. While you wait, I'd research LLMDs (you can find suggestions on how to do this in the helpful threads section at the top of the forum). Many LLMDs book about 6-8 weeks out, so I'd make an appt. now. You can always cancel if the Igenex tests come back 100% negative. (also read up on the short-comings of testing in the helpful threads). You can also ask to be put on a waiting list and often you can get in much quicker if you're able to take an opening on short notice. Make sure you ask about cancellation policies. Many LLMDs will charge you for the appt. if you cancel with less than 48 hrs notice. 3. If you haven't already, I'd speak with your local doctor about starting antibiotics (often abbreviated as abx). I know you were thinking of going in for a throat swab. Usually, lyme is treated with more than one antibiotic at a time. But take what you can get. If your child initially seems to get worse, make note of it. Look for any body rashes. Ask your DAN about detox agents and try those before stopping an abx prematurely. In lyme, there's something called a herxheimer reaction, caused by the toxins released by dying bacteria. You get worse before you feel better. So a bad reaction to abx may be a good sign. 4. For background, if you like to read, the best single source for an intro to lyme is "Cure Unknown" by Pamela Weintraub. It doesn't get into the nuts and bolts of treatment, but does a good job of explaining the world of lyme and why treatment can take so long. 5. At the same time, it doesn't hurt to keep looking at Pandas. It's just that many of the members on this lyme forum once hung out on the Pandas forum - many of us swore that we had poster kids for the disease, myself included. It was only after our kids failed to respond to Pandas treatments that we had to keep looking for answers and found lyme (or Tick Borne Illnesses/TBIs - which can mean lyme or any co-infection like bartonella, which causes a lot of neuropsych symptoms). So it's not a bad idea to keep an open mind to both. Hope this helps. But ultimately, trust your gut.

We work with just one doctor at the moment - tho due to our previous Pandas journey, we've seen a number of doctors leading up to this point (I feel like I should have their business cards sewn onto a sash, like girl scouts sew on merit badges). Our LLMD uses abx and then augments with herbs, if that's your leaning, or he'll try an all naturals approach if that's your preference. He's pretty pragmatic, especially when dealing with kids and their crazy parents (like me). He's big on detox, which has helped my DS immensely.

Ok, the instruction manual the hospital gave you when your son was born - the one that told you how to do all this stuff - did you lose it? If so, you have every right to be down on yourself. If you didn't get an instruction manual, then you're no more of a bad parent than the rest of us. I hear you on the overwhelmed feeling. I was there last Friday. Thankfully, starting milk thistle took things down to a manageable level again. But it's easy to feel like you've been run over by a freight train. We do not do a GFCF diet - would never happen in my house. DH and kids would sooner starve (or sneak out to McDs) then give that one a try. I personally wouldn't experiment with herbs on your own - they interact and change balances and I think you can do more harm unless you know what you're doing with them. Same with the supplements. They're not harmless candies. People take them because they're supposed to change things in the body. Someone who's treating the patient is, IMO, the one who should be guiding you. So I think it's good you're considering a professional and not doing a lot on your own, at least not before doing a great deal of research on each one. That said, I also understand the cash hemorrhage. None of this stuff is cheap. So you do what you can and focus on baby steps. Prioritize what works, what you can afford, what gives you the most bang for the buck, what's covered by insurance, etc...Then do the stuff you can and try not to beat yourself up over the rest. You are not super human. You are doing your best. And while that may not feel like enough some days, it probably is. We all have warts, we all fail sometimes, we all have regrets. But you just keep moving forward and loving your child.

Nancy, Don't have any experience with rifampin. Bactrim + zith is what we started out on for Bartonella in our house. Doxy was a consideration as well, but couldn't due to their baby teeth. Are you also doing ERP? That's really helped my DD6 with her intrusive thoughts. I know it's incredibly hard and sometimes you can't touch it until meds dampen the fears, but it also helps me cope and mentally puts into into "coach" mode instead of "I hate this crap and want it to all go away" mode. Laura