mama2alex

Oh, one more thing. I just noticed you said you are just learning about PANDAS, so I'm not sure if you know about the PANDAS-Lyme connection. A lot of folks on the PANDAS forum have found that their PANDAS kids also have Lyme/coinfections. If you have your daughter checked by a Lyme-literate (ILADS-trained) doctor, you might just want to ask them to take a look at your PANDAS son as well.

Here's a quote from the ILADS web site on bulls-eye rashes: "It is important to know that the EM (bulls-eye) rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy." Here's a link to the page where I found that, if you want to read more: http://www.ilads.org/lyme_disease/about_lyme.html If they are ignoring it, dismissing it, and taking the "wait and see" approach, they aren't the right doctors to deal with this. Can you find an ILADS doctor near you? When my husband was bitten, our doctor had him on a 4 week course of abx within 4 days of the bite. We found out later that the tick was positive for Lyme. He never got any rash. Better safe than sorry!

Oh, that makes sense, as the Tribune and the Times are owned by the same company. For some reason the Tribune article didn't come through on my Google alert. As for the Times, I've been following their health "coverage" for years, and something stinks over there. I'd love to be a fly on the wall of those offices and know what's really driving their insanely biased coverage of autism, vaccines, and now Lyme. Hoping they haven't caused too much damage this time...

I've been taking this for the last month or so. My doc said it helps repair damage to the mitochondria. I haven't felt an improvement in how I "feel" but I started Bartonella treatment soon after starting this and other supplements, so its hard to tell what's doing what. In general, I just feel worse right now, but I trust this doctor and have no doubt its helping on a cellular level. My son isn't taking it though.

This is a good example of why we should all be especially careful when discussing our doctors... http://www.latimes.com/health/ct-met-illinois-lyme-doctor-20110713,0,4002412.story

Thanks for the product recommendations and Michael, thanks for the update! I may look into some of these products, but am thinking about trying some less expensive things first, such as switching out our cordless phones for landline phones. Does anyone turn off breakers at night, as Klinghardt suggests? (I woulnd't even know how to do this!) Does anyone keep their wireless router off, or gotten rid of wireless computers in their house? Anyone seen any difference doing this?

I feel like my son's progress has stalled and am looking around at "what else can we do?" We see the LLMD in 11 days and I plan to ask him about KPU/HPU, as the white spots on his nails were pointed out by another doctor as a possible indicator of this. In trying to learn more about that, I've been reading about Klinghardt's ideas and watching his presentation which someone posted here. He keeps talking about EMFs and the extreme importance he places on limiting exposure to those. I just read an article about Ann Corson and she also places a lot of importance on this. This is an area I was avoiding, as our house has wireless and it just seems ubiquitous in general. So, how to get away from it or at least protect ourselves to whatever extent possible? Has anyone here tried "unplugging" so to speak? Have you seen significant changes in treatment response? Any tips on how to do it? Michael, I'm going back and reading your posts as you've obviously done a lot on this front. Anything you have to add, or anyone else's experiences would be much appreciated.

Thanks for posting this! I read the transcript and it was interesting. Its hard to understand why Dr Zemel and the people at IDSA are so closed-minded. It doesn't seem to matter how much evidence ILADS presents or how many patients they help, the IDSA just isn't listening. Thank goodness for the brave and open-minded doctors who follow ILADS!

Our LLMD has been treating my ds11 for Bartonella since last September. He's doing much better, but we are not there yet. I'm going to ask for KPU testing at our next appointment, because I think he has hit a plateau and has some symptoms of KPU. We haven't done any psych drugs. We saw a psychiatrist for a while and she was willing to prescribe abx for PANDAS, but she didn't really know how to test or look for infections, or what abx treat which infections, so we are working with an LLMD now (since Sept. '10).

The topic of vaccines comes up fairly often here, so I thought I'd share this story from "Age of Autism" I found tonight. An autism mom created a web site containing 900 stories (so far) of kids who had adverse reactions to vaccines. "The truth that we're talking about is much more than autism here -- everything from sudden death to seizures, acute allergies to horrible gut problems, arthritis to ADD." I know there are parents here who's kids' PANDAS/PITAND/Autism was triggered by a vaccine. I thought some might be interested in adding their stories to this web site. Story: http://www.ageofautism.com/ Web Site: http://followingvaccinations.com/

Thanks for posting! In the article they say "But the overuse and misuse of drugs — patients not finishing a full prescription or taking antibiotics for a virus when they are only effective against bacteria — have allowed old bugs to fight back and eventually overpower antibiotics, rendering some of them useless." Interesting they don't mention the use of low-dose antibiotics in livestock. The Natural Resources Defense Council and others have recently filed a lawsuit against the FDA for this very reason. See this article: http://www.onearth.org/article/you-want-superbugs-with-that Seems there is a huge amount of money to be lost if antibiotics are taken out of the food supply, so the party line has become "overuse/misuse in treating human patients is to blame."

Hi Wilma, Just wanted to say hi, and hang in there! With the right treatment, she will get well. Just don't give up. It can take a long time, but she will get there.

Hi Wilma, Just wanted to say hi, and hang in there! With the right treatment, she will get well. Just don't give up. It can take a long time, but she will get there.

We use Nutrivitamin Enzyme Complex by Integrative Therapeutics. My son's is without iron, mine is with iron.

LLM has a good point, but of course its up to you how much you do before you get in to see a doctor. I have to say that a trial gluten-free, dairy-free diet has the potential to increase your energy within days, if you are sensitive to these things, and there is pretty much no risk involved. It would also allow you to have that information going in to your first appointment (ie, gf, df diet REALLY helped me, or, gf, df diet did nothing for me). That would be helpful to your doctor. I also think the probiotic is good preparation for any treatment and very low risk. It also has the potential to help you feel better in the short term if you have gut issues going on, such as yeast overgrowth.

Oh, you could be right! We didn't really know what we were doing and they were able to test it, even though it looked dead when we brought it in. Its possible it was still alive though - I know those things don't die easily! A quick phone call to Igenex would give you the answer.

Wilma, I would do everything you can to improve your immune system and set yourself up for healing. I agree with taking the Transfer Factor from Researched Nutritionals - my son is taking Transfer Factor LymPlus from RN. Also, you might try removing dairy and gluten from your diet to see if this helps you feel better. This could have a big, immediate impact on your energy, so its worth a try. Make sure you drink at least 8 glasses of water a day and cut out sugar as best you can. I would get on a probiotic now, before starting treatment. Custom Probiotics is a good, high quality one to start with - you can order it from iherb.com. Also, taking D3 is a good idea to make sure your immune system is well supported. If you can ask your family doctor to test your D3 levels, that's ideal. Our LLMD said the number needs to be between 60 and 70 to optimize Lyme treatment. But if you can't get the testing, I would just take 3,000 IU's a day to start (I weigh 120 and take 4,000 IU's daily). I am taking A-Bart as prescribed by an LLMD. It is homeopathic, but powerful, so I wouldn't start taking it without a doctor's guidance.

Glad to hear your kids are doing well! We had to do this recently when my dh was bitten. He pulled it out with his fingers, but I've read about something called a "tick twister" which will ease the tick out without squeezing it or accidentally breaking off the head. He put it in a little plastic container used for sauces at a taco place and then put masking tape around the edges. We didn't do anything to keep it alive or to purposely kill it. I don't know that it matters whether it dies or not. I wouldn't put it in alcohol though. It did creep us out to have a live tick in the house, but we knew it was secure with the hard plastic around it and the masking tape sealing it in. We were able to drive it to Igenex the next morning as we live 30 minutes away, but you can probably download the form and overnight it to them. We had to pay $65 for Lyme testing, plus $65 for each coinfection we wanted it tested for. We opted to test all, as my husband is the only healthy one left in our family and we didn't want to "wait and see" if he got sick. His tick did turn up positive for Lyme, but no coinfections.

I was worried about Cipro too, but he has been taking it since March and is doing fine. Much better in fact! Not sure about what changes you will see. We had the detox protocol in place before we started Lyme/Bartonella treatment. Hopefully, you'll just see less herxing.

I also saw a strong herx when we put my son on Cipro (he was already on Rifampin). At that time, our LLMD suggested adding 10 drops of Burbur 2 - 3 times a day. It seemed to help. We already had him on the following detox regimen: 125 mg transdermal glutathione per day (tested deficient for this) Futureplex Antitox, Gentle Drainage - 5 drops, 3x/day Futureplex Antitox, Cellular Recharge - 1 drop, 2x/day Bentonite Clay - 8 tablespoons per day Epsom Salts baths - 2x/week Lots of water with lemon Daily exercise We also have him on AdreCor by Neuroscience for adrenal support (2 cap/day) and Thyroplex by Karuna (1 tab/day) for thyroid support. He is 11 years, 73 lbs and has been on this regimen for about 11 months, so he weighed less when we started.

Yes, this definitely sounds like a herx. What are you doing for detox? We have my son take bentonite clay and a few other things our DAN doc recommended. Also, make sure she is drinking LOTS of water - adding a lemon to it is supposed to help with detox as well. Our DAN doc also says its important to exercise every day - even just a 15 minute walk is good, although I know that can be hard when she's hurting. We also do the epsom salts baths.

Thanks for posting these articles! This is something we are starting to look into. Our DAN doc mentioned it and I brought it up at our last LLMD appt, but it was sort of glossed over with no real plan for looking into it. So I'm going back to the DAN doc on Monday to see if he will do the testing and oversee any treatment needed. I'm curious if anyone knows why you need to test for HPL and not just look for B6, zinc and other deficiencies. Also, do these things need to be supplemented indefinitely, or does everything balance out and start working properly once the chronic lyme and metal toxicity have been taken care of? Thanks again for posting about this. My gut feeling is this may be a missing piece of the puzzle for us, and possibly many others on this forum.

Thanks for posting this!! I may have missed it, but I don't think the article mentioned that Bartonella can be contracted from a tick bite - strange.

Wonderful news!!! We saw the quickest progress in the first 12 weeks of treating Bartonella - hope you see something similar.

Glad you got in to see Dr. J! As for why the Bactrim is helping by itself? I think everyone's body is different. We saw improvement in the beginning with Rifampin alone. Maybe he's just never seen this before - doesn't mean its not possible. Did you talk to him about your suspicion that you have Lyme too? Keep us posted on how the Bactrim/Biaxin combo works for her. Remember, she may herx, so be prepared - temporary worsening is sometimes a good sign when you add a new antibiotic. And it doesn't last forever.