matis_mom

We have done this. It is surgery and you should consider it carefully, but I think it did help my son, although it took him a while to recover from the surgery.

I just wanted to thank everyone who has brought up the vaccine issue. You all have SAVED my baby! When we started with this whole PANDAS thing and I started learning more about vaccines, I decided not to vaccinate her AT ALL. Now there is a strong possibility she might have congenital Lyme, and I am so glad we did not add vaccines to the mix!!! I just don't get how those things are still being given to children every day, it's like playing Russian Roulette!

I did this years ago for a former doctor of mine who missed diagnosing my thyroid problem. I sent him a letter to let him know how I was diagnosed to maybe help people in the future because I really suffered for a long time and he basically was saying I was just stressed and needed to change my lifestyle. He wrote me back and said he would not change anything and did not feel he should have done anything differently. I figure he didn't want a possibility of any law suits. I just hope maybe he thought about it later and maybe added the antibody test onto his standard protocol. I mention this because if you do this, if you can, let go of any expectations of getting any responses back or getting responses back that you did not expect or appreciate and just hope it helps others out in the long run. Maybe there is a way to say, Hey, here's some information you may not have known about when you were diagnosing my child and I thought I'd pass it along since we would have benefited to hear about it sooner and would not have suffered so much.... Just some thoughts off the top of my head based on my experience with it..... Susan I have many times thought about this. Currently, we are still seeing our pediatrician (new since we moved last), and she did miss the diagnosis, but has been very helpful and cooperative. Even Dr. L said, "you can't really blame her." So my approach is to keep seeing her for the day to day stuff and support with the other kids. Sometimes I do get a bit fed up of the routine, but I don't know that I would do any better anywhere else. At least she listens and tries to help. But as for our old pediatrician, since I don't see them anymore (because of the move), I would maybe send them a letter, kind of updating them on our family situation and letting them know that all those little things they dismissed added up to a big thing later on. But I would do it in a very non-confrontational way. Otherwise it will get nowhere in terms of "educating" them (although it sure would feel good to discharge the anger!)

What a heartbreaking situation! I would say you need to look at your carrier and see if there is anything up with her. Look into immune deficiencies, absessed tonsils, etc. Even though she is not getting sick *yet* (I hate to say this! sorry!), it's just not normal for her to keep getting strep while on antibiotics. That's probably the last thing you want to hear, but you need to try to find a more permanent solution. Is your younger daughter healthy otherwise? Is there anyone else in the picture that your carrier daughter could be picking up strep from? Also, are you working with your pediatrician or with an Infectious Disease specialist? Maybe you need to go up a notch. And, the ever present suggestion these days... have you checked for Lyme Disease? Another thing to check for is mono. I am kind of in the same situation as your daughter in that nothing seems to touch my tonsils. Last month doctor suggested Lyme, this month she is thinking mono? Apparently in certain people it can hang around and suppress your immune system and one of the typical things they see in those cases is that the person keeps getting strep. The handout she gave me says "there is no treatment for it" and "it resolves on it's own", but I read of people in this forum taking antivirals? I'm not sure what is up with me but I'm not wasting any more time... I'm seeing an LLMD and hopefully he'll figure it out. Sorry, I replied before reading everyone else's comments! Keep us posted and I hope this resolves soon!

What a heartbreaking situation! I would say you need to look at your carrier and see if there is anything up with her. Look into immune deficiencies, absessed tonsils, etc. Even though she is not getting sick *yet* (I hate to say this! sorry!), it's just not normal for her to keep getting strep while on antibiotics. That's probably the last thing you want to hear, but you need to try to find a more permanent solution. Is your younger daughter healthy otherwise? Is there anyone else in the picture that your carrier daughter could be picking up strep from? Also, are you working with your pediatrician or with an Infectious Disease specialist? Maybe you need to go up a notch. And, the ever present suggestion these days... have you checked for Lyme Disease? Another thing to check for is mono. I am kind of in the same situation as your daughter in that nothing seems to touch my tonsils. Last month doctor suggested Lyme, this month she is thinking mono? Apparently in certain people it can hang around and suppress your immune system and one of the typical things they see in those cases is that the person keeps getting strep. The handout she gave me says "there is no treatment for it" and "it resolves on it's own", but I read of people in this forum taking antivirals? I'm not sure what is up with me but I'm not wasting any more time... I'm seeing an LLMD and hopefully he'll figure it out.

Augh, come on, don't make us beg. Keep the updates at least every 4 weeks! So very glad it's working so well for your family

Must be a southern thing... Here in Northern VA, I just made an appointment with an ID doctor who is very Lyme Literate but he works out of a regular practice attached to a big hospital. The friend that recommended specifically said, "do not mention Lyme when you make the appointment as he is already getting into trouble with other docs at his practice." How sad! So I called and I'm being seen for "recurrent strep", since after a month on abx I'm not feeling any better, tonsils still huge, throat a bit red, ear pain off and on...

I thought I would share this even though I have not checked it out yet. Hopefully many here will benefit from this program! LymeTAP offers financial assistance for Lyme disease testing A nationwide program to help financially strapped patients pay for Lyme disease diagnostic tests will start accepting applications November 1. The Lyme Testing Access Program (LymeTAP) will be administered through the Rotary Club of Ferndale Foundation, in coordination with the Humboldt Lyme Awareness Group (HLAG). It is made possible by a generous grant from IGeneX Reference Laboratory of Palo Alto. While all three organizations are based in California, people throughout the United States may apply. “Many patients can’t afford the cost of basic testing,” said LymeTAP coordinator Sylviane Schwartz, of HLAG. “This poses a huge financial burden to patients, who must pay out-of-pocket to get properly diagnosed.” LymeTAP permits testing at any lab of the patient’s choice provided it is certified by Medicare and CLIA (a government designation that sets standards for laboratory testing). Applicants for assistance must provide evidence of financial need. Their treating physician must also sign the application. Initial funding for LymeTAP comes from a $100,000 grant from IGeneX Labs. The program gives priority to children, but adults may also apply. Lyme disease, a bacterial infection spread by ticks, is the fastest growing vector-borne disease in the United States. It has been reported in all 50 states and many foreign countries. Schwartz said it can be a complex illness to diagnose clinically because it can mimic other conditions such as fibromyalgia, chronic fatigue, and multiple sclerosis. “Delays in testing often lead to delays in treatment, which can make the disease harder to treat. LymeTAP will address one cause of testing delay, inability to pay,” Schwartz said. “We hope the program will allow more people to be tested and treated early.” IGeneX, based in Palo Alto, is a reference lab certified by Medicare and CLIA that specializes in clinical and research testing for Lyme disease and other tickborne infections. Humboldt Lyme Awareness Group is an educational organization promoting Lyme and tickborne disease awareness programs in northern California. HLAG volunteers will coordinate the LymeTAP program in conjunction with the Rotary Club of Ferndale Foundation. The Rotary Club of Ferndale Foundation is a 501 c 3 charitable organization set up to support a variety of community needs. Rotary’s motto is “service above self.” According to a spokesman, “The LymeTAP program is a perfect example of this motto in action.” To find out more about LymeTAP and to download an application form, visit www.lymetap.org.

I had never heard of that, but I can tell you we have some very good friends whose first child is severely autistic. Second child mild Aspbergers, but doing very well currently. I just saw the dad yesterday and he had never heard of Lyme induced Autism. Hopefully the seed I planted yesterday will eventually germinate. It is so hard with parents that have already done so much for their children to throw something else at them.

I can keep the days of the week straigh to a certain extent, but let's say I know we have something out of the routine happening on Wednesday, I will remember on Monday, on Tuesday, but then Wednesday rolls around and I totally miss the event. This keeps happening! I will just have to accept it and count on my calendar more than my brain! The thing is I'm so off track with everything it seems, just getting in the habit of writing things down and checking the calendar seems like an unatainable goal. Hang in there, Susan. You will get to the bottom of this, I just takes time.

Hi, For anyone in the Northern VA area, there will be a showing of "Under our Skin" at Sacred Heart Catholic Church in Manassas. PM me if you want more details. Also, if you to the "Under our Skin" website, they have a listing of other showings but I did not see this one there, I just found out through someone in my parish.

I am sorry to hear to see the "lyme mothers with pandas kids" club increase its membership! It is amazing to see everyone is having all these little symptoms. Things that come and go and then when you see someone else's list, you are like, "Oh, I get that too!" Like, I hadn't thought of this before, but I do get "floaters" and I've been having pain in my ovaries every now and then. I also clearly remember a couple of instances of feeling really dizzy for no particular reason. And the ear thing, I get that too. And the creaky/cracky neck thing. And I also think Lyme explains why we keep getting strep and/or are unable to clear it. It kind of helps understand what our kids are going through. I keep thinking if it wasn't for them, I probably would have never made the Lyme connection for myself. We will all get better, together.

This is such an awesome exchange! It is, to me, very much a chicken-egg kind of question... I don't know if we'll ever find the answer. It seems in our family's case, strep and Lyme are partners in crime! Sometimes it's hard to tell who is the culprit. Take joint aches as an example. That is one of ds's symptoms, and it usually comes along right before the "mental" stuff strikes. It could be strep related (along the lines of RF), or it could be Lyme related. One thing that may be helpful is to look and see if you find a patern. We are very much seeing a monthly patern. But again, is this simple a result of the spirochetes coming out to play, or is it that everytime Lyme flares it activates strep and it's just strep auto-antibodies causing the inflamation (be it in the joints or the brain)? What I would give to be able to take a little sample from ds's knee right at that time and find THE CULPRIT. Who knows, maybe if we could do that we would find them both pointing to each other and saying, "he started it!"

Happy to keep throwing stuff at you! Don't think FOREVER. Just try to do it for a couple of days and see if you survive! You are probably not that far from it anyway. I think I missed this, but... what are their "yeast" symptoms???

Thanks Susan! That's the book I just read (among others... TMI!) I am glad to hear someone is seeing good results with it. If you get a chance I'd love to have more details (ie, is he/she dealing with coinfections too, how long he's had it, how long has he been following the protocol, etc.) I am just trying to see what my options are before we jump into hard core antibiotics. DD10 is *really* driving me bananas with her insecurity, need for reasurance, meltdowns, etc. I just want this to stop!

I know you guys are already GFCF, but have you ever tried going completely grain and starch free? It's supposed to starve out the "bad guys". Look up Specific Carbohydrate Diet. It's tough, but may be worth a try until you get the yeast under control.

Besides the tried and true Bentonite and charcoal, has anyone used any of these? - Liver flush - Hulda Clark liver cleanse - Castor Oil packs - Coffe enemas I am going to try some of the gentler methods on myself before I try with the kids... fun!

I am wondering if any of you are using herbal or homeopathic remedies to treat Lyme and/or co-infections. "Researching" online, it seems it takes massive doses of certain drugs to get ride of some of the co-infections. I am pretty positive dd10 has Babesia, and I wonder how my frail 50lb 10yo will withstand the treatment, and if there are any other effective yet more gentle options. She is currently on Doxycicline and her tummy is not handling it very well. Thank goodness ds12, on the other hand, seems to have a GI tract made out of iron!

I don't want to add to the confusion, or steer anyone in the wrong direction, but I have to share our story. Originally saw an LLMD, she was convinced DS had PANDAS with underlying LYME. Tests never supported this and I did not know any better. They also highly suspected Babesia, again, all labs negative. They started treating him and we saw physical improvement but OCD/anxiety still high. We saw Dr. Latimer and had great results with steroid taper, but about every four weeks symptoms would flare. We tried a couple more rounds without great results. We consulted with Dr. Bouboulis for a second opinion before proceeding with plasmapheresis (which was Dr. L's recommendation since ds did not mantain gains, even though he was on high dose Augmentin, he would still "react anytime there was strep in the household"). Much to our surprise, when we did Dr. Bs initial workup, which includes testing for Lyme via a Western Blot, ds showed 4 bands positive after a year on high dose antibiotics! Now I am seeing that our original Dr. was right. I am not saying Dr. Latimer was wrong, all I am saying is yes, he keeps reacting to strep, but I firmly believe Lyme disease (and/or one of the coinfections) is what is causing his immune system to go haywire. Researching this over and over, I have learned that a] Babesia is known to cause neuropsychiatric symptoms very similar to PANDAS b] Bartonella is known to mess up your immune system, to the point where if there is Bartonella most likely all other test will come back negative until the Bartonella is treated. c] Borrelia (Lyme disease) can cause most of the same symptoms as PANDAS, and it seems to "flare" on a monthly basis d] Strep and Lyme seem to go hand in hand... So, with all this added to the fact that we see deer around all the time, my husband has had it, I have it, and two of my other kids (coincidentally the ones that kept getting strep/impetigo on a monthly basis!) will be getting tested soon for Lyme and coinfections, I owe it to all other PANDAS parents out there to tell our story. Please, before you proceed with any more aggresive procedures (IVIG/PEX), make sure you have ruled out Lyme Disease and co-infections. I am waiting to get the CamK result for my dd10, whom I am very worried about because she is quickly deteriorating into depression/worries/anxiety. The pediatrician is treating her with doxcycline for 30 days, suspecting Lyme. Now she is having severe headaches with pain over/around/behind the eye (this could be a symptom of Babesia). So, we have an appointment lined up with an LLMD, who is also familiar with PANDAS. Sorry to go on and on. Each case is different but there are enough PANDAS kids testing positive for Lyme to make it, in my opinion, "standard procedure" to rule out Lyme first. It should be taken into account too that a negative test DOES NOT RULE OUT LYME. My son was tested repeateadly over a year ago when he was having PANDAS symptoms plus joint pains, fatigue, etc, and nothing showed. You really need to see an LLMD to be sure. Am I sorry that we took this PANDAS "detour"? No. Dr. Latimer gave him his brains back, she got him back to a point where he is very functional and we know he can get back to 100%. I don't even know if we would have ever found the Lyme any other way (or rather, believed in the original diagnosis by the first LLMD we saw.) But for my second PANDAS/Lymie child, I am choosing to treat Lyme and co-infections first, and see if that takes care of the neuro-psychiatric part. God bless everyone who has shared their stories and resources! My prayer is that in each child the true underlying infection will be promptly found and treated. Isabel

Glad to hear your good news! I was trying to send you a PM but your box is full...

Good article indeed! Reading it I realize both ds12 and dd10 have Babesia... more testing on the horizon!

Thanks Michael! I have to remember to test each of us for all the different stuff! I've never been very good at it, but I'll try...

Hi, I was just looking at an article posted today and the newspaper where it was published shows and add for Texas Lyme Disease Association (www.txlda.org) You might want to check them out.

Wow, so you've been there and back. Thanks for posting this, it makes me feel better. So, do you think all of the PANDAS symptoms your kids had before the Lyme diagnosis were due to Lyme? Or are there some that are "purely" PANDAS? I am just re-thinking everything these days! Those monthly "PANDAS exacerbations" DS had... were they just Lyme flaring up? Or were they truly PANDAS? I guess it doesn't matter what we call it as long as we can get it taken care of. I sure wish I had listened to the first LLMD we saw... Live and learn!

It is probably herxing but it is good to let the llmd know. Eye pain can be a symptom but I should mention that my sister had pain behind the eye during her lyme treatment. At the urging of our llmd, she had her house tested for mold and finally learned that her house had toxic mold in it. She had no idea that she had a leak and that this mold was circulating through her home. Once the mold was removed and her air vents were cleaned the eye pain she had had for a long time went away. Mold in the home can make it hard for a person with lyme (or any other illness for that matter) to get well. I would write down the symptoms (I know it is hard to do with all you have going on). Thigh pain is a symptom of babesia. When you start treating lyme sometimes the coinfection symptoms become more pronounced. Good luck! Oh man! The mold... Our original LLMD wanted us to test for it. With so much going on, we never did. It would be around $500 that I would much rather spend in treatment... seems anything and everything that needs to be checked is in the hundreds of dollars! LOL! But yes, I have to keep better track and see if I see some kind of trend here. Thanks for the help!