Anyone tried NAET for PANDAS?

[MichaelTampa]

For those unaware, NAET is an acupuncture treatment for "allergies". It is mostly used for food, but can also be used for other things such as perfumes, animals, and so on.

 

I used NAET a number of years ago quite successfully to improve my digestion enormously. I had allergies to almost every food out there. Unfortunately, while the treatment is supposed to be permanent, the allergies did come back over time, some sooner than others. I look at it as, we still didn't remove the reason the allergies were created, so they were just created again. Perhaps that "reason" is Tourette's or PANDAS, perhaps not. In the meantime, I have been struggling so much with digestion and food allergies, that I am going back to get a few basic vitamins, minerals, and maybe a couple foods treated.

 

But, going to a new practitioner this time, telling her the recent PANDAS "diagnosis", she points out they do have a vial for strep, and also for basal ganglia. I am more hopefuly on the strep vial, if PANDAS is a "bad" reaction to strep, that is exactly what an NAET treatment for strep would do in theory, is remove the "bad" reaction to strep. Now, the only catch is, are we really talking about the same "bad" reactions to strep. NAET is in theory for "allergic" reactions. If I have heard the PANDAS reaction described in more detail, the bit fancy words just went right through me, so I don't know how likely the meanings are to match up. But, I am certainly thinking that is is worth a try, while I wait for blood test results to get going with PANDAS treatment more seriously/traditionally.

 

Michael

[smartyjones]

michael - interesting b/c our pediatrician - who is open-minded but has only seen a few cases of pandas but is open to consulting with experts - put it in those terms for me - that he kind of has an 'allergic reaction' to strep.

 

someone had asked about naet a few weeks ago and i have a friend who herself and her kids have lyme and she's used it along with other treatments. i was waiting for her to give me an answer and i ran into her - she said one was expensive treatment and used a machine, she wouldn't recommend that - not enough benefit for the expensive. years ago she used a chiropractor who was fabulous and she believes cured her of reactions to her dog but doesn't do that as his main form of treatment. i'll ask her again for a more definitive recommendation.

 

kathy

[MichaelTampa]

My experience with NAET is just needles for acupuncture and vials you hold with the offending item in them. I have never heard of machines being used for NAET. In Florida here, I am paying $60 per treatment after a more expensive first visit. In general, I would expect prices per treatment to be similar to that of an acupuncture treatment--that is what it is.

 

One treatment is supposed to be a permanent cure for the allergy (caveat to my experience, discussed above). In my experience, what did make it expensive and time-consuming was needing to treat so many different food items, and only able to do 1 or 2 items per treatment. But, if you're treating strep, in theory at least, it could just be one treatment.

 

Michael

[Stephanie2]

Michael,

 

I don't have any experience with NAET, but I have an unrelated question for you. I gather from this and other posts that you are an adult with PANDAS? Would you mind telling me what general age-range you are in and what your symptoms are?

 

I often wonder about this for myself b/c whenever my child has an exacerbation, I usually get sick along with him and then I go into a deep depression for a couple of months. I usually chalk it up to just being overwhelmed with the PANDAS symptoms in my son, but lately I have been wondering if maybe I get strep right along with him and I get depression due to a PANDAS reaction in myself.

 

What do you think?

 

Stephanie

[Dakri]

Your post really caught my attention! My son has TS and we just had a positive strep test today confirming my suspicion that we are dealing with PANDAS the past few months. My son has had NAET treatment for food allergies and I really believe that it worked. I am so happy to read on here that there is a vial for Strep. WOW! That gives me a lot of hope. It is expensive but worth it in the long run.

 

Good luck to you! Please post on here if you try the NAET for strep!

[MichaelTampa]

Dakri--I certainly will be trying the strep vial, probably in a couple weeks, but we'll see. I don't get to the NAET person very frequently as I have so many other doctor type people I go to, and she is kind of far away. I'll certainly post results, and also interested if/when you try.

 

Stephanie--Hello. I am 42. I was diagnosed with Tourette's about a year ago, and that diagnosis explained a lot of things. I have just recently looked into PANDAS, and got a Cunningham CamK score in the high PANDAS range, and really, the PANDAS explains much more. Looking at me with pre-Tourette's-diagnosis eyes, you might describe me as someone who is very nervous and anxious and antsy and worrying a lot, with very poor digestion and acid reflux and loose stools and food sensitivities and candida, who has unexplained sensitivities to fluorescent lights and cellphones and other wireless devices, to a lesser extent, perfumes

 

My symptoms from the fluorescent lights and wireless devices are: headaches building to migraine headaches over hours of exposure, poor sleep (frequently waking up, not getting good rest, nightmares or just very bad dreams), on), digestive symptoms worsened, increased urine dribbling, increased sensitivity to sounds and smells, inability to focus, exhaustion, and irritability.

 

With enough exposure, the irritability will turn into rage attacks with just the slightest provocation of someone doing something that doesn't seem to me as fair or right. I have hit people, even as an adult, and as a child, I was so enraged that I brought a knife in an attempt to teach a bully a lesson (someone much bigger than me, really very stupid action from the self-preservation action). At work, I have sent e-mails that I deeply regretted later, and knew I would when I sent them. These rage attacks do pale in comparison to some of the horrific descriptions I have seen on this board of some PANDAS child rage attacks, but they certainly are undesirable and do lead to real problems, I am probably lucky to have escaped worse consequences.

 

Going through the symptoms of PANDAS from Dr. Kovacevic's website, webpediatrics.com, I note that I have almost all of them, but not all. I have poor handwriting, but not atrocious, and my math skills are absolutely top-notch. Things I do have are:

 

- OCD symptoms (intrusive thoughts, anxiety, obsession with order/cleanliness/precision, death thoughts, repetition of obscene words or phrases)

- sleep disorder (insomnia, inability to fall asleep, frightful sleep, nightmares)

- behavioral regression (separation anxiety, “baby-talk”, temper tantrums)

- aggressiveness, hyperactivity and/or ADD

- during exacerbation, wide pupils (appearing terror stricken) or appearing to look through you rather than at you (appearing “not really there”)

- various and evolving tics (eye blinking, tapping, facial grimacing, coughing, throat clearing, uttering words for no apparent reason)

- adventitious movements (adventitious = spurious/accidental/unusual/abnormal)

- frequent urination (18 or so times per day), and uncontrolled dribbling post-urination (prostate doctor at a loss to explain)

- short-term memory loss

- mood lability

- increased sensory responses (increased sensitivity to light, sound, touch, and/or smell)

 

Not on his list, but I consider part of the echolalia, is love for repetition, such as one sees on shows like Seinfeld, where the same joke is basically repeated the whole show. For movies, I really love, I will insert a quote from the movie in conversation whenever the opportunity comes up.

 

While my TS or PANDAS or whatever symptoms have really heightened over the last few years with stressful situations and a very traumatic incident in 2006, will say that basically all of this has been there since childhood, just not as bad. I will point out, though, Dr. Kovacevic's website also talks the possibility of an adult-onset PANDAS, and so you may want to look at that as well.

 

I'm a little new to the PANDAS scene, but haven't heard a lot about depression being a primary symptom. Others may chime in, but I would suggest you look at the other lists of symptoms. There is always the Cunningham CamK test, too. As an adult, it will be extremely difficult to get an adult practitioner to believe you have PANDAS without some blood test giving some objective assessment. PANDAS almost doesn't exist, and adult PANDAS is more that way.

 

I will say that I have had extremely low serotonin scores in the past, when they were tested a year and two years ago, and I have been in several month bouts of depression-like symptoms as well. It came at a time of severe stress in general, and with a lot of important things not working out so well in my life. With a lot of supplementation, and I do mean really a lot, am not quite in that depression place anymore, but I am certainly in the nervous/worry place still. I am certainly hoping that the PANDAS treatment, along with the eventual end of this one big project in my life, will help a lot. I am really just getting started on the treatment path, lots of blood tests ordered for Dr. K. and my local doctor, and in the meantime taking antifungals for candida.

 

Michael

[fuelforall]

Michael,

 

Thanks, my NAET doctor has the strep vial and the basal ganglia vial. I may take my son. She only charges me $100 per treatment, could be worse. Her office is four blocks from my office, don't be envious!

 

I would recommend ThreeLac for your candida issues, worked for Jenny McCarthy's autistic kid. Many adults swear by it, that it beats anti fungal any day of the week. I used it when my digestive/yeast problems seemed out of control. It's been a lot better since but I have to watch my sugar intake.

 

Michael

 

PS- Your story is fascinating and may it come to a healthier resolution!

[faith]

Michael,

I've thought about this (treating strep via NAET) since I have had my son treated already for many things during the past year. I'm not 100% sold on it, I basically tried it as a last resort to see if it had any effects on my son's tics. I can't really attest to it having any positive effect however. we've treated many things and I didn't really see anything remarkable happen. we did treat 'virus mix', and again, didn't really note any thing in particular. I always hoped that I would hit on that one thing that may be the trigger for his tics and other issues, but again, can't really attest to anything. it was getting expensive, especially when some things had to be treated repeatedly in order to clear, the last thing we did was tomatoes, and had to do that like four or five times, so $60 times 5, $300 for one item, kind of alot. I havn't been back since tomatoes cleared. I wondered about the strep thing too, but don't know. I think I'll only feel it has some efficacy if I see improvement in issues after the treatment.

 

Other Michael, , having a NAET practitioner blocks from you is cool........but was YOURS featured on News channel 12???....

 

Faith

[fuelforall]

Michael,

I've thought about this (treating strep via NAET) since I have had my son treated already for many things during the past year. I'm not 100% sold on it, I basically tried it as a last resort to see if it had any effects on my son's tics. I can't really attest to it having any positive effect however. we've treated many things and I didn't really see anything remarkable happen. we did treat 'virus mix', and again, didn't really note any thing in particular. I always hoped that I would hit on that one thing that may be the trigger for his tics and other issues, but again, can't really attest to anything. it was getting expensive, especially when some things had to be treated repeatedly in order to clear, the last thing we did was tomatoes, and had to do that like four or five times, so $60 times 5, $300 for one item, kind of alot. I havn't been back since tomatoes cleared. I wondered about the strep thing too, but don't know. I think I'll only feel it has some efficacy if I see improvement in issues after the treatment.

 

Other Michael, , having a NAET practitioner blocks from you is cool........but was YOURS featured on News channel 12???....

 

Faith

 

 

hI, fAITH,

Yes I had my son cleared for a lot of foods, it helped motivate him to go to treatment and he got to like Roberta mittman, the unfamous NAET practitioner on Park Avenue. It was interesting because I had my dairy and egg sensitivities cleared too but what she also found on me was I had EMG sensitivity. All of the foods and such my son tested in RAST testing as sensitive were the same ones NAET found- total crossover. Dairy was so bad for my son, it took her about seven treatments to clear it- same day, no coming back every day. She also found he had allergy issues with water and vaccines. Whether you buy it totally, it still is fascinating and indicative of what difficulties my son has with allergies.

Roberta sez she has the strep vial waiting if we want to come in. She did do some brain stuff one day but... not much help ultimately. My son was just glad to get his foods back again.

Wendy's stuff on about strep pyrogenes is really fascinating and important stuff.

Michael

[faith]

michael,

what were the symptoms your son had re the allergies to some foods? were they neuro symptoms or the typical food allergies? did you feel any of the treatments had any effect at all on any of his behaviors? we went thru the whole panel, dairy gluten, sugars, preservatives, etc. we don't have typical allergic reactions here, I was just doing it in hopes of finding triggers for his tics or behaviors...... Also, what symptoms of yours were alleviated, did you feel?

 

thanks

Faith

[fuelforall]

michael,

what were the symptoms your son had re the allergies to some foods? were they neuro symptoms or the typical food allergies? did you feel any of the treatments had any effect at all on any of his behaviors? we went thru the whole panel, dairy gluten, sugars, preservatives, etc. we don't have typical allergic reactions here, I was just doing it in hopes of finding triggers for his tics or behaviors...... Also, what symptoms of yours were alleviated, did you feel?

 

thanks

Faith

 

It's hard to say really. I can only tell you that we ran blood tests in labs and his allergy numbers, where the normal level was 150 or so, his level was 1100. So we were just looking to deal with that. I don't really know what good it did my son to get those treatments other than to let him eat foods again.

In my case, it was strange because EMG really does seem to bother me. I wear this q-link necklace to ward off EMG evils. I might not wear it so much except the day after I began it, I took it off. My mood turned foul and I rushed to Roberta the next day begging her to fix it. She "turned" my allergy, I got a new necklace and I felt more normal.

I just think at this point my son's mood changed because he felt good about having his food allergies fixed and not being left out at school. Right now if it would help, I'd put him back ona diet, anything to end this intense level of anger, temper, swearing, you name it, he is in now. And the tics are out in force. What a Christmas!

Michael