tpotter

DS has PANS, which includes lyme, strep and other infections, and tindamax has worked extremely well for him...1 week on/1 week off. he has also been on bicillin injections for the last year, augmentin XR, and now is also doing ART. My feeling is that your child was probably herxing very badly, and definitely needs to do it slower. DS took an herbal remedy about 1 1/2 years ago, and called me having a terrible reaction (couldn't breathe.) We had to go to the ER, and afterwards, I pulled him off. Later, i found out it was exactly what he should have been taking, but was just taking too high of a dose. But, it scared him so badly, he refused to try taking it in just a much smaller dose. So, I don't think the problem is tindamax as a whole, but rather it's just too much for your D, and I will keep her in my prayers that things calm down quickly. And, I like the idea of making sure you do plenty of detox for now (we really like bentonite clay, and also use charcoal.) Also, I agree that we have to keep track of the autoimmune process, but building up the immune system, so it can fight on it's own. What we found is that's important to treat all these things, but it has to be done, sometimes in babysteps.

thanks

DS has it, and I highly suspect I do, too...plus my mycoP levels are going up again. I'm already taking doxy, azith and rifampin, and lots of detox (plus other supplements.) But, what is typically used for chlamydia pneum? Just curious. DS is allergic to doxy, flaggyl, biaxin and azith.

She's near Philadelphia, which would be pretty far for you to go. I also know nothing about her. But, I would suggest just googling: medical hypnosis.

Personally, we have found that strengthening the immune system has helped us tremendously. We currently do ART, chiropractics, LLMD. DS is also on lamictal and trileptal, becuase he has seizures, although it is believed that they are related to the PANS. They are non-epileptic, but do respond to the medication (he sees a neurologist for ONLY controlling the seizures, but the neurologist was very impressed that Dr. L. had originally identified what he had as post-infectious encephalitis.) If her ASO is climbing, that would make me suspect that she is being continuously exposed. Has everyone in the house been tested? Dr. B. tested us for strep and mycoP, and I turned out to be the one with the MycoP (I had been symptomatic for years, but no one would bother to test me...even though I later found that my overall IgM was 300% higher than it should have been, and there was no reason that I should have suffered for that long...and am still trying to get rid of it.) But, because I am still fighting mycoP, my DS is still having high IgG's to it, so it is going to be a problem until we can get me well, too. So, I suspect you may be dealing with someone in the family or school or such who is constantly exposing her. BTW...if there is lyme or co-infections, lab tests are notoriously inaccurate. We all tested negative, except DH, but because we were all completely symptomatic (including rages and "stretch marks" rash) we were treated for bartonella, lyme, babesia, and evenutally, DS's labwork came back positive for someo of them. But, overall, I would suggest that you test everyone in the house, AND, you do whatever you can to build up the immune system. Also, test for MTHFR gene mutation, and pyroluria, which may explain why she is having trouble detoxing.

I agree wtih Dedee. Sometimes it's ok to take abx if you are consistent with them, rather than on/off. DH is on coumadin, and he just can't pulse abx.

I think you will be. My son was in the same place as your son at 15. What other treatments is she getting?

Have you had her tested for c-difficil? What are you doing to detox? Also, is she taking lots of probiotics? Perhaps the culturelle is helping provide the proper bacteria in her stomach? But, whatever the reason...at least it's working.

I think it's a combination of more awareness and more information available online (plus more accessibility to online) that is making parents more aware that there IS a link between mental illness and infection/metabolic/environmental triggers. AND, I also think that the massive increase in immunizations, plus improper giving of those immunizations (when children are ill, too many at one time, etc.) is playing a role in the increasing number of kids getting sick with neuropsychiatric illness. Just look at the Autism rates for instance...1:50. I'm really glad that your friend is willing to get her daughter tested. Personally, I think that every child with any kind of neuropsych illness should be tested. And, now that the Cunningham test is available in some states, there is just that much more way to test.

Do you have a followup appt. scheduled with her. I would highly suggest that, at least in the beginning, you schedule one every month, because it will also be the only way she can assess what is working and what isn't. My DS appeared to have bipolar...was tried on several different bipolar meds, and ended up with PANS. We did find, though, that azithromycin and augmentin XR (not together...just 2 separate times) were what worked for him. Clindomycin was another good one. My younger DS and I take rifampin, but along with other abx, as well, since we are treating bartonella and lyme. I would certainly rule out that there aren't other infections and triggers, though, such as lyme, bartonella, babesia, viruses, mold, etc. Many of us have found that it is crticial to find what else may be going on, because remember, as an autoimmune disorder, the child is going to be susceptible to more than one thing, and may have difficulty detoxing...getting the infections and other triggers out of his/her body. Also, if you aren't already, make sure that you are really, really protecting the gut with proper probiotics. This is critical, as about 80 - 90% of the immune system is now believed to be through the gut. The last thing you want is to have problems with the gut. PM me if you want more detailed info, and suggestions as to where to go from here. BTW...we see a good LLMD in Maryland...not too far from northern VA. PM me if you want more details.

LLM...thank you for this wonderful explanation. It makes so much sense to me, and I really hope that it will help my son to understand why it's so important to do everything that we are doing for him (I'll share it with him.)

He had a wonderful time.

Yes, very, very handsome. And, thank you everyone.

Personally, I believe that in order to get through this ordeal we call PANS, we have to use a combination of allopathic and alternative medicine. it's very important to treat the immune system, shore up the gut (which is about 80% of the immune system, anyway), while also treating infection. What I have found is that by treating the immune system, our bodies can better fight off some of the infections itself. That being said, we are still using abx, but are also using vitamins, homeopathic, herbs, as well as chiropractics and acupuncture. We have also treated with PEX and IVIG, and I know that my kids' got excellent results from both (although not lasting, because so much more needed to be treated, as well.) I think that in the end, it really depends on the skills of the individual practioner, his/her experience with different disorders, your comfort level with that person, and honestly, what you also have available to you. I never would have dreamed that I would be doing any "alternative" medicine ever in my life, but the reality is that alternative does, in fact, help. Personally, I don't think it's really one or the other in my own kids' cases.

Just dropped DS off at the prom. He's going with several friends. Never would have dreamed this several years ago.

I agree with HopeNY that you really need to look into Lyme, Bartonella, Babesia, and other co-infections of lyme/tick borne diseases with the kinds of symptoms you are describing. Although other infections can certainly trigger PANS (including strep, viruses, staph, etc, etc.) the treatment for lyme, bartonella, etc, is so much more comprehensive, that it pretty much covers the strep, etc. I would NOT recommend Dr. T. for that. If you want the name of an LLMD, we use one in MD, and his rates are reasonable. You can PM me. We also treat with ART, which follows the Klinghardt protocol, and she uses a combination of homeopathy, herbals, and overall, a more natural approach, in addition to the combo abx that, unfortunately is unavoidable. Unfortunately, traditional doctors who take insurance (except Dr. B., and maybe a few others) really don't get what is going on. And, if you want research that shows exactly what strep does to the body, you can always suggest that they look at Daphne Joel (University of Tel Aviv's) research last year that shows that strep antibodies take hold in the basal ganglia, and also on the dopamine 1 and 2 receptors. The rats that were studied, developed tics, OCD and anxiety. There is also a study from Columbia University in 2010 that was a mouse study that showed that mice injected with strep antibodies, developed the same set of symptoms (the Tel Aviv study actually showed that the antibodies took hold...it went a step or 2 further than Columbia's mouse study.) But, I still wouldn't expect that any of these doctors are going to be able to help you, and the sooner you get her seen by someone who knows what they are doing...especially since she has some clear symptoms of lyme and bartonella and others, the better for her.

I have found someone very close to my house that advertises that she does it, and appears to have a lot of testimonials on her website. I have started corresponding with her to get more info.

Sounds like the activated charcoal is helping her detox whatever is making her agitated.

Where do you live? We have a very good mold expert (certified, and all.) He did air testing with tons of explanation, etc. Not cheap, but overall gave us some very good answers, and in the end, it's way less expensive than living with the mold. And, yes...do it yourself, not through the super. Oh, and make sure that if it comes back positive, that all remediation is done properly. Check back with us if it comes back positive, so we can give you suggestions. The last thing you want is what happened to us (it was spread throughout the entire house by the company recommended by our insurance company...supposedly mold certified, but took shortcuts. Totally a nightmare.

I would definitely consider abx, but I would not be so quick with the steroid burst. If it is babesia or some other tick borne disease, steroids can make it worse. Also, if there's a possibility of mold and/or allergies (I would agree with LLMD that it sounds like there is something environmental going on, too), you have to get to the source.

Don't quote me on this, because I don't know for sure, either, BUT...our Cunningham tests were extremely high D1, D2, but both my boys appear to have low dopamine.

WOW. Such a quick positive response. Beautiful.

I'll bet it's the Prevnar making things worse if you just gave it to him.

Ditto. I presume if you are seeing Dr. T., you are in the Hudson Valley area, and I heard recently that it is rampant with Bart. That's where my kids and I got it from. Bartonella is not Lyme, but tickborne. Dr. T. does not treat Lyme. If you want a name, let me know, and I'll PM you. We have been getting treated for about 2 1/4 years now with multiple abx and cyst busters by an LLMD, and recently added in ART. Getting lots of relief. CFS may be result of bartonella, lyme and/or viruses, such as HHV-6 or Coxsackie. I used to have horrible, horrible fatigue, but no longer since getting treated.

PMing you right now