mama2alex

I'd say 30 days is a good initial treatment for a new bite - that's what my husband did. However, they are not just treating the bite now. He became paralyzed, so they are treating a full-blown illness. She should take him to an LLMD who will treat him until he's well, however long that takes. Also, Amox will not "preclude" coinfections. Different antibiotics are used to treat different co-infections, and Babesia requires a medication used for Malaria, not antibiotics. So he will need to be tested and clinically evaluated for those other infections. Has she seen a rash of any sort develop? If she sees one, especially a bullseye, she should snap a picture of it, for proof if needed in the future.

Yes, I've heard that our doctor is doing this test. It's been available for several months (can't remember exactly when it was approved).

We have been struggling with the sleep-away camp decision this year too. DS is finally well enough that he wants to go (one of his main Lyme/PANDAS symptoms was severe separation anxiety) and I've been really worried about the tick exposure. I discussed with our LLMD and he said to buy him the tick-repellant clothes, have him put on a bug spray or lotion containing 30% deet while he's there, and he is going to add in Lyme meds just before ds goes on the trip (he's currently focusing on Babesia/Bartonella). I will also spray his shoes with permethrin before he goes. Any chance you can teach her about Lyme a bit, and tell her there are certain clothes she needs to wear on the trip to protect herself? My son is very aware of ticks and watches for them on his clothes when we are near woods. I know I have it easy b/c he's a boy and doesn't care what he wears, but just a thought. Then I would check every inch of her when she gets home, and be on the alert for a rash or behavior/health changes. On a positive note, you do have one of the best Lyme doctors in the country (IMHO) a short drive away if you suspect she's been bitten. As SFMom mentioned, my husband was bitten a year ago and we basically treated the bite, although the tick did test positive for Lyme. Also I wanted to mention, I don't think there's any way to rule out Lyme in a PANDAS kid unless you've had them thoroughly evaluated and tested by a Lyme-literate doctor. Maybe you've already done this, but from your post it sounded like you were assuming she doesn't have Lyme because you haven't seen a tick or rash. I'm sure you've heard this before, but I just couldn't help but say it again.

You can definitely check titers for Diptheria, Tetanus and Pertussis. We had titers checked for D, P and T some years ago and though fully vaccinated, ds had ZERO immunity to Pertussis. Two years later, on a recheck, he still has ZERO immunity even though we did get a booster in between the two titer checks. IMHO the vaccine isn't very reliable. When there was an outbreak here in CA two summers ago, some in the media tried to pin it on "those crazy/stupid/ignorant parents who don't vaccinate" but the three kids we know who got Pertussis that summer were fully vaxed. I recently had ANOTHER discussion with our ped about why I wasn't going to give ds the TDaP booster. I told her he makes no antibodies to Pertussis anyway, so why vaccinate him for it? I asked her how many cases of Diptheria they've seen in their practice - ever (that tied her tongue). And I told her if he gets cut on a fence I'd get him a Tetanus booster - she didn't argue with that either. Which makes me wonder - when I was a kid, we had to get a Tetanus booster something like every 10 years - only if you got a risky cut or injury would you get the shot before the 10 years was up. So why do they suddenly need one before 7th grade, after having had 3 or 4 by the time they were 5 years old?? Oh, I think I know - $$$$$$$$$$$$$$$$$. I would sign the philosophical exemption form asap, because they are now trying to pass a law saying we have to set up a doctor's appointment to be "educated" and then have our doctor sign off on the exemption form before the school will "accept" it. For anyone looking, a couple of great resources on vaccines are the www.nvic.org (National Vaccine Information Center) and the book "What your doctor may not tell you about children's vaccinations" by Stephanie Cave: http://www.amazon.com/What-Doctor-About-Childrens-Vaccinations/dp/B0058M5KI2/ref=sr_1_2?s=books&ie=UTF8&qid=1337304484&sr=1-2 As you can see, this topic gets my blood pumping!

I found an LLMD in Seattle by contacting ILADS. Very relieved there is someone up there. Now I just need to convince my aunt to go see her!

Thanks! I'm hoping to find a Lyme specialist, but if there aren't any in that area, this will be a good option.

My aunt started having swelling and joint pains 2 months ago - starting in one foot, then quickly migrating all over her body. She's been to doctor after doctor, and no one can give her an answer - only pain meds which are barely helping. I just found out and of course suspect Lyme, since they have lots of deer on their property. I know she doesn't fully "get" what I'm telling her and will have trouble finding the right doctor on her own. Can anyone recommend an LLMD in Washington? They are 13 miles from Seattle, and she's in her 80's, so the closer the better. Please PM me if you know of someone good who can help her figure out if she has Lyme (other than Klinghardt, who I already know about).

"Southern Tick-Associated Rash Infection" IS Lyme Disease. If your doctor is telling you otherwise, you need to get to an LLMD. Here is the story of how Lyme Disease came to be called "S.T.A.R.I." in the south: http://www.psychologytoday.com/blog/emerging-diseases/200906/rebel-cause-the-incredible-dr-masters-part-1 This is from Pamela Weintraub, the author of the book "Cure Unknown." She doesn't specifically mention "S.T.A.R.I." until section IV. You'll need to talk to a doctor who treats Lyme and acknowledges that it exists (is not a "rash disease" of unknown origin) in the south to know what other antibiotics are needed. Your child should also be checked for coinfections (Bartonella, Babesia, Erlichia, etc).

So sorry you are dealing with this! I think you should call your LLMD and INSIST on speaking to him. You shouldn't try to self-treat or go to someone who has no clue about Lyme. Be the squeaky wheel - its okay. This may not have any bearing on your situation, but I had headaches for 1 1/2 years before figuring out that it was a gluten/dairy sensitivity. Can't hurt to play with your diet while you wait for a call back. You never know what's interacting with what.

I wanted to share the conversation I had with my son's LLMD this afternoon. My son was a cub scout and wants to continue with Boy Scouts. They have a week long "sleep-away" camp in June and I have been really torn as to whether I should let him go, or face his (and possibly my husband's) loud protests, and make him skip it. We are in CA, so not as bad as the east coast, but its definitely out there. I read this thread and was still feeling torn. I want him to have these fantastic experiences that develop friendships, responsibility and independence, but of course I don't want him to end up more debilitated than he already has been. I asked our LLMD what he recommends, fully expecting him to say, "no way, don't send him." But he surprised me and said he thinks its really important for the development of kids this age (12) to have experiences like sleep-away camp. He went on to give me a laundry list of what we need to do to protect him (all tick-protective clothing, coach him on tucking in socks/always wearing a hat, use a 30% deet product and see if we can enlist an adult at the camp to make sure he puts it on each day, etc. We are not currently giving him meds to treat Lyme (borrellia) specifically, so our doc is considering ratating him to these before he leaves. I'm not advocating either way for anyone. Everyone's circumstances are different and its a very personal decision. But I just wanted to share this because his answer really surprised me. I will probably let my son go on this campout, with all the precautions in place, but I'm sure I will not enjoy that week as much as I would if I were ignorant of the risks.

Interesting food for thought... http://www.ageofautism.com/2012/04/nimhs-insel-needs-a-lesson-on-pandas-pans-paresis-and-autism.html Here's Insel's original blog post which inspired the AoA blog post: http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-pans.shtml

If you are talking about the Custom Probiotics brand, I give my 11 yo ds the Adult Formula CP-1 - Acidophilus and Bifidus, 50 billion organisms. We just buy it off the web site: http://www.customprobiotics.com/products.htm Hope that answers your question!

My ds took Alinia toward the beginning of Lyme treatment, and we also were able to get it in the U.S., but our insurance covered it. He never had any problems/herxing on this medication. The only time we've seen obvious, troublesome herxing is with Cipro and then with Babesia treatment. We never saw a huge positive change, only slow change in small increments over a long period, so I could never point to one medicine or another as being responsible. I'm sorry to hear you're feeling discouraged. How long has your dd been in treatment for Lyme/coinfections? You haven't seen any changes whatsoever?

The CA State Assembly Health Committee is meeting today to discuss this bill. It would require California parents to have their pediatrician sign off on a philosophical exemption for vaccines. Doctors can sign off or not at their discretion. This is just one more step being taken in the direction of limiting parental rights to make healthcare decisions in California. Recently a law was passed allowing doctors to vaccinate kids (both boys and girls) 12 and up for sexually transmitted diseases (vaccines such as Gardisil) without parental knowledge or permission. Now they are trying to make it more difficult for us to say no to the vaccines we still have authority over. Please click on this link and sign the petition: http://www.change.org/petitions/the-ca-state-house-oppose-ab2109 They have over 1200 signatures so far, and it looks like the goal is 1500 before they submit it.

For those who didn't see it, they interviewed a young woman who has severe Lyme Disease, a newscaster who is well now, but was sick for over 10 years, and a producer from Dr. Phil's show, who was also sick for a long time. He let the stone-faced IDSA doc talk for about a minute. And I was really pleased with the fact that they showed such a long clip from "Under Our Skin" and showed/named the documentary very clearly so people can find it (they also included a link to the Under Our Skin website on their website). I think it could really help some people who have undiagnosed Lyme - they or their relatives/friends may recognize similarities and look into Lyme now. They had limited time, but I thought they did a great job! The show has a discussion forum for this episode on their website, if anyone wants to check it out or comment: http://community.drphil.com/boards/?EntryID=31912 There are already 913 comments - not surprising.

If she is taking daily antibiotics, she should be on a pretty good dose of probiotics anyway. If this doesn't help the constipation, magnesium can help. Also, if nothing else works, and you aren't already doing this, you might try a gluten-free diet. Both of these have helped our family with constipation.

From the clip, it sounds promising! Its on tomorrow, so if you want to see it, set your DVRs tonight!

You are the mom and you know best what your daughter and your family needs. I am 100% supportive of whatever you decide to try next. I've certainly considered going down that route, just haven't needed to so far. And I know others on this and the PANDAS forum have tried psych meds, some with success. It sounds like you have a great doctor to guide you in that area, so that is encouraging. Please keep us posted on how she does. I'll say a prayer that this gives her, and you, some relief!

Laure, Your friend can't rely on the neg coinfection tests, and the LLMD should know better. Our son has Babesia, but tested neg. He is now being treated and is having a strong herx. When we temporarily took him off the initial Babesia meds, he calmed down, so its very clear. If a child has Lyme, they often have coinfections, but the tests are unreliable. She should make sure she is with a GOOD Lyme doc, as not all are equal.

"Brooke Landau, Emmy Award Winning Weathercaster with the CW Network in San Diego will appear on the Dr. Phil Show on Friday, April 13th. Brooke shares her 17 year battle with Lyme Disease. One which some doctors have called the worst documented case in the country. Brooke went to bed fine one day, and woke up paralyzed. She overcame that battle and today she continues to fight and survive. Brooke’s survival story has been featured on the Today Show, Good Morning America, Fox News, ABC, Discovery Health, Mystery ER, CW Network…and now the Dr. Phil Show. Brooke says she continues to speak out for those you can’t. LLMD, Dr. Chitra Bhakta will also be on the show." http://whatislyme.com/dr-phil-show-about-lyme-disease-will-air-on/

Here's another possible route: http://vaxtruth.org/anti-vaccine-friendly-doctors/ This website has two separate lists of "pro-vaccine-choice friendly" doctors. These are most likely to be open-minded doctors who often deal with chronic-illness, autism, ADHD, etc on a regular basis, so very possible they will already know about PANDAS. The lists are organized by state. I'm actually planning to use these to find a new pediatrician in our area. I am just so tired of ours zoning out or getting uncomfortable when I say PANDAS, Lyme or OCD. And I'm especially tired of them trying to sell me on a new round of vaccines at every sick visit.

Bulldog 24, I noticed in some of your recent posts you mentioned you are (or were) being treated for Lyme. Could your baby have it? Also, I've never bought the "kids under 2 don't get strep" thing - what, do they have superimmunity to it until they turn 2? It seems silly to me. I'm so sorry all your kids are sick.

I'm curious why your neurologist suggested it - to possibly help with the pain? Also, how much does your son weigh? Our LLMD didn't talk about working up the dose, but I'm supposed to call in two weeks and report, so maybe they will do it then.

This is timely! Our LLMD is having us start my ds 70lbs on 1mg LDN per night. I read the following last night in my book, "The Lyme Disease Solution" by Kenneth Singleton: "...I have found low dose naltrexone to be beneficial for a number of my patients with Lyme disease. The reason for this is that LDN appears to restore the ability of the immune system to regulate itself. When the immune system regulates itself properly, there is a significant reducation in chronic inflammation of the "autoimmune" type. Taken at bedtime, LDN blocks the body's endorphin receptors for a brief amount of time (one or two hours), signaling to the body that it is time to make endorphins...Finally, I have found that LDN works best when the following three conditions have been addressed prior to its use: 1) vitamin D deficiency has been corrected, 2) food sensitivities have been corrected by [diet], and 3) adrenal stress or adrenal fatigue has been properly corrected." I would love to hear anyone's experience with LDN. We will start him on it Monday night. I am hopeful that it will help.

http://www.statesman.com/life/health-medical/court-orders-fda-action-on-antibiotic-use-on-2257361.html "Nearly 80 percent of all antibiotics sold in the U.S. are given to farm animals used in food production, according to a recent estimate by the FDA. Farmers mostly use the drugs in healthy animals to spur growth or to keep them from getting sick in crowded, unsanitary feedlot areas." It would be amazing if this actually happens. I'm sure there will be enormous corporate pressure against it though.