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This just came across my FB feed today, and I thought it was interesting:

 

http://medicures.org/british-researchers-may-have-just-found-the-cure-for-multiple-sclerosis/

 

By synthesizing proteins from the sheaths in a lab and then injecting them into the blood stream at increasing doses, the body begins to learn that they are safe and no longer attacks them.

 

This type of therapy has already been used in treating some allergies, a treatment that is called allgergic desensitisation, but its only recently that scientists have thought it had potential to be used elsewhere.

 

In autoimmune diseases the immune systems sees little protein fragments in your own tissue as foreign invaders and starts attacking them. What we have found is that by synthesizing those proteins in a soluble form we can desensitize the immune system by giving an escalating dose.

 

These findings have important implications for the many patients suffering from autoimmune conditions that are currently difficult to treat, he added.

 

Another option for PANDAs treatment in the offing, perhaps?

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NancyD --

 

I thought low-dose immunotherapy was introducing donor antibodies to help a system fight issues that its own immune response is sub-par with respect to. That's why this appeared to me to be a different type of intervention . . . actually introducing the proteins that induce the immune response and "training" it that the proteins are not invaders, not foes.

 

Do I have it all wrong?

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No, not donor antibodies. LDI is a form of immune desensitization that combines an enzyme called beta glucuronidase with minuscule amounts of antigens relevant to your medical condition. The enzyme makes T-cells pay attention to the antigen, down-regulating the immune response to that allergen. The Lyme mix contains over 70 strains of pathogens - dead antigens mixed together with sterile water and combined with beta-glucuronidase prior to administration. They are in highly diluted concentrations - different concentrations are given depending on the sensitivity of the patient. A dilution of 6C would be a 1,000,000,000,000 dilution of the antigen. The higher the number, the more diluted the concentration.

 

LDI is also used for strep, yeast, mold, mycoplasma, foods, chemicals, and environmental allergens.

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Ahhhh! Thanks, NancyD and Gpookie. I had LDI and low-dose IVIG conflated in my mind up to this point . . . did not realize they were two entirely different interventions.

 

Well now I'm wondering about LDI for the primary identified PANDAs/PANs "nasties." I guess I should go back to the front of the forum and search "LDI" for threads, but I'm wondering, generally: a) how many PANDAs/PANs practitioners use LDI as a typical care protocol (given as you mostly hear about IVIG, abx and steroids); B) is it primarily used in conjunction with other treatments (like GPookie's IVIG)?; c) how long is this particular course of treatment/therapy?; d) with what regularity is it undertaken?; and, maybe most importantly, e) has anyone seen it have a lasting, curative effect?

 

Thanks!

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My son started LDI simply because his IgE level was 1800 (with no outward signs of allergies and also zero food allergies). Just another attempt to calm down his system...I do LDI and it helped tremendously with my seasonal allergies. Don't know about it for PANDAS if allergies aren't a trigger.

 

The IVIGs are for their subclass deficiencies. Augmentin/biaxin mix for strep & PANDAS...

 

Kids are 100%+.

Edited by Gpookie

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LDI is still relatively new - only about 3 years. Low-Dose Allergy (LDA) Immunotherapy has been around for many years. I don't know of any PANDAS/PANS only doctors doing LDI. There are many integrative doctors who treat PANDAS/PANS children who are doing LDI. Quite a few PANDAS/PANS children are having great success with a combination of LDI strep and LDI Lyme once they hit their core dose. Treatment (either subcutaneous injection or sublingual drops) are every 7 weeks and the cost is very minimal - ~$25-$50/dose depending upon the doctor. Insurance does not cover. The trick is to start at a very diluted dose and go slow. If you have no reaction at all in about 7-14 days you can go to a lower number (less diluted dose) until you find your core dose. If the dose is not diluted enough and you flare you must wait 7 weeks for your immune system to reset itself and administer at a more diluted dose. Once you reach your core dose you administer every 7 weeks but you can give a booster (1/2 dose more diluted) in between doses. You can also administer other LDI or LDA antigens in between. There is also LDI autologous where they take your sinus drainings or stool or urine samples and mix very tiny miniscule amount with beta glucuronidase to create your own personalized antigen. We don't know how long you have to take this since it's only been around for a few years but theoretically you should be able to wean off this slowly once your immune system is balanced - perhaps do a treatment annually. Many people are having great success with LDI.

Edited by nancyd

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The study of Ivig by Williams and Swedo in 2015 was not significant ..

I'm looking for further published info but at the Brown conference they shared a PowerPoint showing no difference between placebo group and Ivig.

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