mama2alex

Don't have any advice to add - just thinking of you. Sounds like he's past the worst of it and you'll figure out what was going on in hindsight. Hugs!

I loved the book "Cure Unknown" by Pamela Winetraub. Its not a "how to cure" book or even specifically about kids, but I've found it tremendously helpful to have an overall perspective on Lyme and the history of the controversy over it. It sounds like you are on a great diet for Lyme treatment already, but I think sugar-free can also be tremendously helpful, especially for these kids who are on antibiotics. I use Xylosweet for baking (natural sugar substitute you can find at Wwhole Foods).

I am so sorry to hear your news and will say a prayer for you and your family. I don't have a recommendation except to agree that you should reach out to Beth Maloney. Her book reveals that she went through a divorce, and it may have actually happened when she lived in So. Cal, not sure. I do know she's an attorney and has contacts there. She's responded to my emails about treating PANDAS in the past. I was glad to hear your PANDAS ds is doing so much better. I saw the news coverage of your family a year ago and remember how much he was suffering. You've done a great job! Hang in there and I hope you keep posting here for support. We are here for you!

Thanks for the responses so far. I hope to see more, as I think this is a really important discussion for everyone. Jodie, I'm particularly interested in what you are talking about. What is ART? Can you go into more detail about how you've gone about "retraining" the immune system and how herbals and homeopathic medicine does that? Did you figure this out yourself, or have you gone to a homeopath? Something about "retraining the immune system" rings a bell with me. My son has asthma almost every time he gets sick, he's had pneumonia 6 times and I believe it would have been 7 or 8 if he hadn't been on antibiotics the last 1 1/2 years. He has trouble transitioning, gets into behavioral and emotional ruts, and has OCD. These are all patterns that his body/mind has seemed to get stuck in, so maybe we do need to retrain his immune system. During his most recent illness, he did have a very slight fever, but to me this was a good sign, as he hasn't had a real fever since his onset of PANDAS almost 2 years ago. I also agree with fixing the gut. We have been working on this since my son was 3, but am not at all sure that this has been completely accomplished. I need to retest for yeast, etc, but was sidetracked after we did 3 days of stool samples (an absolutely excruciating process all around), sent it to the lab, then learned that the testing kit the doctor's office had given us was EXPIRED. This was discouraging, and I haven't rerun the test yet. Maybe over spring break we'll get it done. Let's keep this discussion going!

An LLMD has been treating my ds10 since last September. He is doing better in many ways, but we still see a setback - increased OCD, moodiness and difficulty going to school - when he's exposed to strep or a virus. Has anyone seen the autoimmune reaction to infections disappear with Lyme/coinfection treatment? How long did it take? Thanks! Jennifer

Thanks for this post Laura!! I have been thinking about giving and then my brain fog rolls in and I forget to get in done - again! I will write this on my to-do list right now. And I love Susan's idea about company matching. I think my husband's company does this.

Thanks so much for posting this! I'm so glad to hear you had a good day. I have been trying to work up my courage just to do a 21 day course of doxy as a Lyme provocation. I've been really afraid of herxing at the same time I'm trying to heal my son, but your post is giving me more courage. My current plan is to start abx in two days. Wishing you more and more of the good days!!

Awesome, thanks!!

Thanks for posting this, but I wasn't able to access it. I got to the web site, but when I clicked on the movie it said, "We're sorry, this program is not available online in your area." Were you able to watch it? I'm disappointed, but hopefully others will be able to access it. I have been trying to see this movie for months. Netflix has never made it available, not in theaters, not online. What's the deal? If they don't want the epidemic to be "hidden," maybe they should make the movie more accessible! ( :

Momcap, I'm so sorry your family is going through this. From what you've said, it seems like your son's issues are definitely infection triggered. And all of his symptoms you mentioned are symptoms of Lyme and co-infections - OCD, knee pain and swelling, chest pain, sleep problems, fever, rashes, those electric shock feelings, numbness, rages, short term memory problems, all of it! All these things are on the checklist our Lyme doc gives us when we come in for appointments. So don't doubt your own instincts - it sounds to me like you are on the right path. ILADS stands for the Internation Lyme and Associated Diseases Society. Their web site is www.ilads.org. I'd recommend checking it out and learning as much as you can. There are different types of Lyme doctors. Some adhere to the ILADS guidelines and believe that Lyme can become chronic and cause a range of health issues, including neuropsychiatric. These doctors will treat until all the symptoms are gone, even if it takes years. There are other doctors who will treat Lyme, but believe that a few weeks of antibiotics cures it and if the symptoms are still there, it was never Lyme in the first place. These doctors will insist on a positive test and won't venture a clinical diagnosis, but because the tests are so unreliable, a clinical diagnosis is really the only realistic option. I hope this all makes sense to you. I would recommend reading as much of the ILADS site as you can. You can also give them a call to get doctor recommendations - and they may have some in Canada. Also, If you haven't already, I'd recommend you read the book "Cure Unknown" by Pamela Winetraub. I learned so much about Lyme Disease from this book and it reads more like a story than a medical advice book, so its an easy read. You need this information if you are going to advocate for your son and get him the right help. Good luck moving forward! You are doing great, so don't be discouraged.

Bumping this up to make sure everyone sees it! I took the survey - didn't take very long.

Wow, so many things he said to you send up red flags for me. Is he an ILADS-recommended LLMD or was he recommended by someone here? He doesn't see the connection between you being positive for Lyme and your son's problems? Did he test for coinfections? He wants to do IV abx on a 7 year old if the tests are positive? For how long? He obviously knows nothing about PANDAS if he wanted you to stop giving abx. If I were in your shoes, I'd get another opinion from an ILADS-recommended LLMD. Oh, and I just looked up Stony Brook Medical Center. Here is their page on Lyme Disease (lots of red flags here!): http://www.stonybrookmedicalcenter.org/patientcare/lyme Here's a quote from their web page on treatment: " For early treatment, three weeks of oral antibiotics (amoxicillin or doxycycline) is often recommended. For late disease, the recommended treatment is high doses of intravenous antibiotic for 21 days."

I filled it out too. That's where I first learned about PANDAS. I haven't seen any contentious discussions about PANDAS, although I admittedly don't read it all the time. What's the problem?

This article on Dr. Jones came out today and I thought you all might be interested. http://www.yaledailynews.com/news/2011/apr/05/amid-medical-controversy-children-saved/

I don't want to sound pessimistic here, but your situation sounds so much like what we went through with our school last year - I think you should bring in an attorney or advocate. If I remember right, this was your 3rd meeting this year with them? You've been trying to get the accomodations all year and nothing has happened? It sounds to me like they are just using delay tactics. You've given them all the info they need and one more letter or email isn't going to change anything. You are up against prejudice - they don't believe that "behavioral" issues can have a medical cause. So now you need to make use of the law. An attorney or advocate will either A) scare them into doing what you need or set things up for you so that you can get private school covered by the district or C) sue them to force them to give your kids what they need for a "free and appropriate education." Just my humble opinion, but please PM me if you'd like to talk more about this. I'm really sorry they're putting you through this!

I'm so sorry! I would be so mad. How ignorant are they? To make such a serious accusation in writing, on a child who has been diagnosed with a well-known illness by a doctor. There is so much prejudice around mental illness symptoms. Unbelievable!!

I agree with everything Karen said. You have nothing to hide. I wanted to add that I'd get her in to be checked sooner than later. The coughing plus fever plus previous history of pneumonia says to me that you should not wait to see the doctor. Get her in asap, just to be safe. My ds10 has had pneumonia 6 times and the 2nd time (age 5 1/2) he relapsed after a full course of abx and had to be hospitalized for a week. Once they've had it, they are more susceptible, so please don't wait. I'm sure you'll hold your own with the ped, and maybe you'll be pleasantly surprised by their response.

Kara, Glad you are getting some answers on what infections to treat. My ds10 has Bartonella too and we've seen dramatic improvements with treatment. Its been 6 months and our LLMD does not feel that we've knocked it out yet though. We started with Rifampin, added Alinia, then added Azith, then added an herbal remedy, then switched Alinia to Cedax, then upped Rifampin a bit. We will be switching out the Azith for Cipro in two weeks. They are also treating for Lyme at the same time, although he tested neg for it. We had the same questions as others about Bartonella. Could it be the lone infection and transmitted by a cat? Our LLMD said if it were the Bartonella transmitted by cats, the symptoms would be different - it wouldn't look like this. And assuming its tick-borne, it would be extremely rare for a tick to transmit only Bartonella. I don't know your dd8's strep history, but just wanted to mention that our LLMD believes our ds10 is harboring strep in his nose. Since your ds11 seems to have an ongoing infection, you might want to ask the LLMD about your younger child and whether she might be harboring strep anywhere. Strep and Lyme/TBI's seem to LOVE each other. My ds is now on a antibiotic nasal spray to hopefully knock this out too. Ugh, what a battle. Wishing you the best on your journey forward!

You can click on the topic and read Sheila's reply as to why she locked the topic.

Wilma, are you in an emergency situation? Thinking of you...

Hi Kara, Welcome to the forum! It does sounds like your son may have infection-triggered OCD and other issues. Now the hard part is determining what those infections are and whether he is still infected. I would recommend seeing a Lyme-literate doctor to rule out Lyme and other tick-borne infections. Even if you don't remember a tick bite, it could still be an issue. And you can't rule it out with the current tests, you need an expert to make a clinical diagnosis. LLMD's are also familiar with strep and other infections that can cause behavioral/psychological symptoms. We went down the PANDAS/strep route for over a year before seeing an LLMD. My son tested positive for Bartonella, an infection that can cause many of the same neuro-psychiatric symptoms as an autoimmune reaction to strep. To further complicate things, he also has PANDAS - he always worsens with strep and other infections. He also has chronic viruses and possibly heavy metals that didn't come out with chelation. My point is, all these things can go together, so you need to look at all of them. Each infection can disregulate the immune symptoms, making it more susceptible to all the others. I think its better to wait until you know if there are current infections before trying steroids. These suppress the immune system, so aren't the best thing for a kid whose trying to battle a chronic infection. I'm a little concerned that your doctor was planning to do IV-DMPS on a 4 year old. I had mercury poisoning and was diagnosed when my son was 3. I did IV-DMPS, but although we suspected he had heavy metals, they wouldn't do it on him, even to test. They did transdermal DMPS, oral DMSA and the Yasko protocol, which is all supplements and actually was the most effective. Good luck moving forward! It sounds like you are very on top of things already!!

Hi Anne, We went to Chicago last July for IVIG with Dr. K. My son had just turned 10 and was relatively easy to handle too. I told my husband I could go without him, but he insisted on going and I was really glad to have him along in the end. During IVIG, I was able to go get coffee, pick up a movie from Walgreen's or just take a walk to clear my head. Without him there, it would have been tough b/c of my son's separation anxiety. After the 2nd day of IVIG our son got really sick with a bad headache and vomiting for an entire day. It was good to have someone else there to help make decisions about medication and calling Dr. K, and it was comforting for my son to have his dad there. I was also able to get out of the room, get a break, go buy popsicles when he started to feel better, etc. I think you'll be fine either way, but having my dh there made the trip much easier for me.

Has your child been evaluated by a Lyme doctor? Lyme can cause migrating pain and a number of children here with PANDAS have been found to have Lyme and associated tic-borne illnesses.

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I tried to vote too, but it said voting is closed. Hope this means Lyme gets the race car! Thanks for finding this!