Anyone With Experience with NAET Treatments?

[morninglory333]

I am Grandma to the 3 year old who recently moved to Sri Lanka (Dad in military) and is currently on Med-Evac in a hospital in Singapore. She is undergoing testing due to escalating JRA symptoms that are not typical (if there is such a thing). They are being discharged tomorrow with a protocol of ibuprofen & Zantac for the next 8 weeks to see how she responds. My daughter was successfully cured from an auto immune disorder (ITP) as a teenager by having NAET treatments and is considering this route for her daughter at this point. Just wondering if anyone has any experience or insight with NAET for JRA / JIA/ Lymes? Here is a link to some info on NAET:
http://www.naet.com/Patients/patientshome.aspx

[Maz]

Hi Morninglory,

If you type in NAET in the search box at the top of the forum, you will find 3 pages of past posts from folks who have considered or used this supportive treatment. Some no longer post, but you can try PMing a few of them to see if you get any response. It’s not a treatment that is mentioned here often as this forum is primarily for folks doing antibiotic therapy. Perhaps your daughter will be able to find a really good NAET forum to ask about this for JRA?

I’m wondering if the docs suspect H. Pylori infection in your grand-daughter? This can be passed between family members and ITP has also been connected with this condition and H. Pylori eradication has also been studied with long-term abx and success in RA:

http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura#H._pylori_eradication

Just thinking along the lines of potentially connecting some dots….especially as the docs have prescribed her Zantac (though their thinking may be to protect stomach from pain meds). Please only consider these possibilities as ones from a fellow patient to research further…as no one is a medical doctor here. 😉

[Suzanne]

@Maz wrote:

Just thinking along the lines of potentially connecting some dots….especially as the docs have prescribed her Zantac (though their thinking may be to protect stomach from pain meds). Please only consider these possibilities as ones from a fellow patient to research further…as no one is a medical doctor here. 😉

If they suspected h. pylori, that is an easy blood test and would have been done in the workup. Yes, the Zantac would be to protect her stomach from the ibuprofen. Weeks of an NSAID is standard protocol for suspected JRA, and sometimes (especially when only one knee is involved) that is all it takes for remission.

Since they did not find a reason to treat for infection, I think it is good news that they are taking more of a ‘wait and see’ approach vs. ‘early aggressive’ traditional JRA treatment. It means you have some time to research.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Maz]

@Suzanne wrote:

If they suspected h. pylori, that is an easy blood test and would have been done in the workup.

One would hope so, yes. Being abroad in a foreign land may not guarantee this. Wonder how many rheumatic patients here were tested for H. Pylori at their initial work-up. Correlations have been drawn with both RA and SD in the literature, but rarely hear of anyone saying they were tested for it. Can anyone weigh in on this? Do you recall if this was done for your daughter, Suzanne, or did you have to ask for various infection tests?

[morninglory333]

Thanks Maz,
I think you may be right about the H. Pylori infection- my daughter said something about my granddaughter testing positive for “ANA”? antibodies and then I thought she said something about “poly-something or other” but maybe she said Pylori ??? I’ll copy & email this to her to find out. Very interesting that ITP has been connected if that is what they suspect. I’ll check into that link a little later on. It will be nice when my daughter gets home and can chime in because she has more accurate details. 🙂
Morninglory

@Maz wrote:

Hi Morninglory,

If you type in NAET in the search box at the top of the forum, you will find 3 pages of past posts from folks who have considered or used this supportive treatment. Some no longer post, but you can try PMing a few of them to see if you get any response. It’s not a treatment that is mentioned here often as this forum is primarily for folks doing antibiotic therapy. Perhaps your daughter will be able to find a really good NAET forum to ask about this for JRA?

I’m wondering if the docs suspect H. Pylori infection in your grand-daughter? This can be passed between family members and ITP has also been connected with this condition and H. Pylori eradication has also been studied with long-term abx and success in RA:

http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura#H._pylori_eradication

Just thinking along the lines of potentially connecting some dots….especially as the docs have prescribed her Zantac (though their thinking may be to protect stomach from pain meds). Please only consider these possibilities as ones from a fellow patient to research further…as no one is a medical doctor here. 😉

[Maz]

@morninglory333 wrote:

I think you may be right about the H. Pylori infection- my daughter said something about my granddaughter testing positive for “ANA”? antibodies and then I thought she said something about “poly-something or other” but maybe she said Pylori ??? I’ll copy & email this to her to find out. Very interesting that ITP has been connected if that is what they suspect. I’ll check into that link a little later on. It will be nice when my daughter gets home and can chime in because she has more accurate details. 🙂
Morninglory

Maybe polyarticular or pauciarticular (rash suggests a different diagnosis) juvenile rheumatoid arthritis?

http://www.uptodate.com/contents/pauciarticular-onset-juvenile-idiopathic-arthritis

Helicobacter pylori is a spirochete, a similar organism to Lyme, as it is spiral-shaped. It causes all sorts of stomach problems, including gastritis and stomach ulcers. Treatment usually is a combination abx therapy along with an acid-reducer (it’s why I wondered about the Zantac). One of the abx used in trials for RA patients with H. Pylori infection was clarithromycin (brand = biaxin) and, interestingly, this is one of the abx that pediatric AP docs and LLMDs use for children with rheumatic diseases.

http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2036.2002.01284.x/pdf

[Suzanne]

@Maz wrote:

@Suzanne wrote:

If they suspected h. pylori, that is an easy blood test and would have been done in the workup.

One would hope so, yes. Being abroad in a foreign land may not guarantee this. Wonder how many rheumatic patients here were tested for H. Pylori at their initial work-up. Correlations have been drawn with both RA and SD in the literature, but rarely hear of anyone saying they were tested for it. Can anyone weigh in on this? Do you recall if this was done for your daughter, Suzanne, or did you have to ask for various infection tests?

I was responding to your wondering if the dr. prescribed the Zantac because he suspected h. pylori. I don’t think doctors in any country prescribe a drug based on suspicion if there is an test available to confirm it. On top of that, antibiotics would cure h. pylori so why would he only rx something to manage the symptoms?

I do not know everything they tested my daughter for. An in-patient JRA workup in a children’s hospital is not like an adult’s trip to their physician. You see doctors from several specialties and troops of residents. You consent for blood draws and scans and xrays and biopsies, but they don’t go into detail about every little thing in the differential. We saw rheumatology, infectious disease, and oncology. They ask you questions and you answer as best you can. You ask them questions and they try not to answer because some of the things they are looking for are much, much worse than JRA will ever be. I did not have to ask for various infection tests (nor would I have been able to come up with any during the stressful time) because they decided to treat empirically for infection.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Suzanne]

@morninglory333 wrote:

Thanks Maz,
I think you may be right about the H. Pylori infection- my daughter said something about my granddaughter testing positive for “ANA”? antibodies and then I thought she said something about “poly-something or other” but maybe she said Pylori ??? I’ll copy & email this to her to find out. Very interesting that ITP has been connected if that is what they suspect. I’ll check into that link a little later on. It will be nice when my daughter gets home and can chime in because she has more accurate details. 🙂
Morninglory

ANA-positive
https://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Antinuclear_Antibodies_(ANA)/

My daughter has always been negative, but this is something used to diagnose JRA. I agree with Maz that the poly meant polyarticular JRA.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Maz]

@Suzanne wrote:

I was responding to your wondering if the dr. prescribed the Zantac because he suspected h. pylori. I don’t think doctors in any country prescribe a drug based on suspicion if there is an test available to confirm it. On top of that, antibiotics would cure h. pylori so why would he only rx something to manage the symptoms?

Zantac is an acid reducer used to inhibit stomach acid production and often for stomach ulcer control (and possibly to prevent stomach irritation with NSAID use). It’s surprising how many doctors still don’t test for H. Pylori when a rheumatic patient has a rheumatic disease and a stomach ulcer, blaming pain meds instead. I’ve talked to quite a few folks here that this has happened to, unfortunately. As this child had quite a bit of gut involvement, it’s likely it is being used to help palliate some of these symptoms and speculating – in a fellow patient kind of way – that this might be prescribed without H. Pylori testing just for symptom control.

I do not know everything they tested my daughter for. An in-patient JRA workup in a children’s hospital is not like an adult’s trip to their physician. You see doctors from several specialties and troops of residents. You consent for blood draws and scans and xrays and biopsies, but they don’t go into detail about every little thing in the differential. We saw rheumatology, infectious disease, and oncology. They ask you questions and you answer as best you can. You ask them questions and they try not to answer because some of the things they are looking for are much, much worse than JRA will ever be. I did not have to ask for various infection tests (nor would I have been able to come up with any during the stressful time) because they decided to treat empirically for infection.

The work-ups for children with suspected rheumatic diseases must be very comprehensive, as you say….perhaps even more so than for adults. Trouble is, why test for infections when infectious causes aren’t treated (e.g. mycoplasma) and the standard of care is immunosuppressive therapy, anyway? Spoke to one lady who had TB and RA and this wasn’t discovered until she failed on DMARDs and was about to be prescribed a biologic (absolutely contraindicated for TB)! Sometimes it depends on the doctor and how willing they are to look further than their nose. My guess is that H. Pylori would not be a typical infection to test for with JRA/JIA (or even relatively healthy kids with stomach upset), which is why I wondered if your young one has been screened in her initial work-up.

Thanks for your input, Suzanne.

[Suzanne]

@Maz wrote:

As this child had quite a bit of gut involvement, it’s likely it is being used to help palliate some of these symptoms and speculating – in a fellow patient kind of way – that this might be prescribed without H. Pylori testing just for symptom control.

Trouble is, why test for infections when infectious causes aren’t treated (e.g. mycoplasma) and the standard of care is immunosuppressive therapy, anyway?

My guess is that H. Pylori would not be a typical infection to test for with JRA/JIA (or even relatively healthy kids with stomach upset), which is why I wondered if your young one has been screened in her initial work-up.

The Zantac was prescribed to protect her stomach from the gallons of ibuprofen she will be taking over the next few weeks. That is standard of care.

They test for infections to rule them out. It is separate in their minds. If no infection is found to be causing the symptoms, if no cancer is found, then they proceed with the JRA diagnosis and treatment. It is a diagnosis of exclusion. There is no definitive test for JRA, so they must test what they can to rule out. Not all children have to go through so much, it just depends on how they present.

She probably was not tested for h. pylori, and it would be fine to ask about it. I still don’t understand why you would think they would suspect it and give her Zantac for it, though. If they suspected, they would test and prove and treat.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Maz]

@Suzanne wrote:

She probably was not tested for h. pylori, and it would be fine to ask about it. I still don’t understand why you would think they would suspect it and give her Zantac for it, though. If they suspected, they would test and prove and treat.

The reason I brought H. Pylori up and wondered if the docs suspected it was because this little one’s Mom had ITP at one time, which has apparently been tied to this particular infection (see Wiki link above) and it may be passed unwittingly between family members.

http://publichealth.arizona.edu/outreach/health-literacy-awareness/hpylori/transmission

I am right there with you that it is more than likely the docs prescribed Zantac for protection against NSAIDs – a standard of care. However, my thought was that if they did ask for the Mom’s history and tested by antibody for H. Pylori, just on the off-chance, then kudos to them if they still suspect it, even if testing wasn’t conclusive. There are several methods for testing for H. Pylori and, if only testing antibodies, for example, this could well be negative in a person who is immune-compromised. A doc who looks at the family history might just be open-minded enough to suspect and treat for an infection prophylactically, even if testing isn’t clearly positive.

Thing is, if a person has concomitant Lyme (which can also cause gastric upset), they may be too immune-compromised to produce enough antibody to test positive for much of anything (if only using antibody tests). Perhaps I didn’t explain myself well enough on this on this thread; really a follow-on from Morninglory’s thread re: Lyme.

The following link describes how Lyme affects the gut. Similarly, H. Pylori, another spirochetal infection, can also wreak havoc in the gut – these pesky spirochetes have a lot to answer for and, according to Lyme docs I have had, they are able to confer survival strategies upon one another in the slimy biofilm of the gut (from mouth to anus and elsewhere in the body):

http://www.thehumansideoflyme.net/viewarticle.php?aid=62

Did I explain myself a bit better this time? A bit late here and the old brain starts to fade at this time of night.

As we’re all just patients or a patient’s relative-advocate here, all we can do is pass along personal experiences and information we’ve read in the hope it may be relevant in some way. It’s always up to individuals to do their own due diligence, though, and talk with their treating docs about anything of concern.

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