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Melbel
08-03-2012, 10:05 AM
As I research daily regarding Lyme Disease, I often come across information relating to autism (both share inflammation as a common symptom).

There are two medications/supplements that are highly touted to reduce inflammation and improve immune modulation which in turn helps reduce symptoms in both Lyme and autism. I encourage you to explore these treatments further through research and discussions with your child's medical care providers. Not every supplement or medicine works for all children, but I thought enough people were helped that it was worth sharing.

The first is Low Dose Naltraxone (LDN) - Research has shown that many autistic individuals have high levels of beta-endorphins in their central nervous system. Low dose naltrexone blocks the action of opiate receptors, thus reducing their level of endorphins. Improvements noted in autistic individuals who have taken low dose naltrexone include: increased socialization, eye contact, and general happiness; normalized pain sensitivity; and a reduction in self-injury and stereotypic (self-stimulatory) behaviors. My DS showed significant improvements after 1 to 2 weeks of LDN (primarily fatigue, socialization, reduced sensory sensitivity). He currently takes 4.5 mg of LDN compounded into a transdermal cream that he takes at 9 PM.

Another highly touted supplement is Protandim. There is currently a study for autistic children. There are links in the attached site.
Protandim Research Project
The "Protandim Research Project" is a series of case studies put together by parents with Autistic children. An archive of case studies will be archived on this site and available for public downloads. Additional information will also be made available through this site.
http://autismsos.publishpath.com/protandim-research-project ETA: This link appears to be dead now. The supplement may still bear consideration. We have not used Protandim yet, but are supplementing with turmeric, one of the ingredients.

As previously posted, a large percentage (up to 90% according to some experts) of autistic children actually have underlying chronic infections, including but not limited to Lyme Disease and/or Myoplasma, that when treated result in a decrease in autistic presentations. As we experienced first hand, many doctors are content with treating symptoms and simply assigning labels, without attempting to determine the route cause.

Lyme Induced Autism Page: http://www.lymeinducedautism.com/lymeautismconnection.html

The association between tick-borne infections, Lyme borreliosis and autism spectrum disordershttp://www.medical-hypotheses.com/article/S0306-9877(07)00578-6/abstract

Preventable cases of autism: relationship between chronic infectious diseases and neurological outcome http://www.futuremedicine.com/doi/abs/10.2217/phe.09.5?journalCode=phe

Patients diagnosed with Lyme disease share many of the same physical manifestations as those diagnosed with an Autism Spectrum Disorder. Long term antibiotic therapy may be an effective treatment for children co-morbid with Lyme disease and Autism Spectrum Disorder: http://www.ncbi.nlm.nih.gov/pubmed/22361005

karstmama
08-03-2012, 11:19 AM
thanks so much for the interesting post, melbel!

hellbennt
08-03-2012, 11:27 AM
thank you!:hug:
do you have any links for lyme/auto-immune deficiency disorders (such as Chronic Fatigue Immune Deficiency Syndrome)?

if this belongs somewhere else (& it just may!), please PM me?

mytwosons
08-03-2012, 12:19 PM
My DS was on LDN for years (just recently stopped). There is a yahoo group of people using it. Jacquline McCandles (http://www.starvingbrains.com/), I believe, was one of the first drs to use it for immune regulation in autism. If you buy the book directly from her site, you'll be able to join her yahoo group in which she answers questions herself.

She does recommend kids are GFCF ( and I think soy free) while on LDN.

Another supplement that we've found to be great for inflammation is curcumin. DS has only used Enhansa (very high quality), but I use Life Extension Super Super Bio-Curcumin since it's cheaper and feel it has helped a lot with inflammation. (eg: I can do the insanity workout and not have sore muscles the next day.)

Melbel
08-03-2012, 12:32 PM
My DS was on LDN for years (just recently stopped). There is a yahoo group of people using it. Jacquline McCandles (http://www.starvingbrains.com/), I believe, was one of the first drs to use it for immune regulation in autism. If you buy the book directly from her site, you'll be able to join her yahoo group in which she answers questions herself.

She does recommend kids are GFCF ( and I think soy free) while on LDN.

Another supplement that we've found to be great for inflammation is curcumin. DS has only used Enhansa (very high quality), but I use Life Extension Super Super Bio-Curcumin since it's cheaper and feel it has helped a lot with inflammation. (eg: I can do the insanity workout and not have sore muscles the next day.)

Dr. McCandles actually responded personally to my email inquiry before I started DS on LDN. We were concerned because he had experienced severe side effects to other medications. We were very thankful for her response that alleviated our concerns.

Curcumin and Turmeric are the same thing. I recently started taking Jarrow Turmeric Concentrate Curcumin 95. It is one of the leading ingredients in Protandim too.

Melbel
08-03-2012, 01:03 PM
thank you!:hug:
do you have any links for lyme/auto-immune deficiency disorders (such as Chronic Fatigue Immune Deficiency Syndrome)?

if this belongs somewhere else (& it just may!), please PM me?

I will be happy to provide links later tonight. :)

Melbel
08-04-2012, 09:06 AM
thank you!:hug:
do you have any links for lyme/auto-immune deficiency disorders (such as Chronic Fatigue Immune Deficiency Syndrome)?

if this belongs somewhere else (& it just may!), please PM me?

This link cites to research based upon symptom.
http://www.lymeinfo.net/medical/LDSymptoms.pdf

Lyme and Chronic Fatigue/Fibromyalgia - http://www.canlyme.com/fibrocfslyme.html

Lyme and CFS: http://lymediseaseguide.org/lyme-disease-chronic-fatigue-syndrome

Melbel
08-04-2012, 09:14 AM
My DS was on LDN for years (just recently stopped). There is a yahoo group of people using it. Jacquline McCandles (http://www.starvingbrains.com/), I believe, was one of the first drs to use it for immune regulation in autism. If you buy the book directly from her site, you'll be able to join her yahoo group in which she answers questions herself.

She does recommend kids are GFCF ( and I think soy free) while on LDN.

Another supplement that we've found to be great for inflammation is curcumin. DS has only used Enhansa (very high quality), but I use Life Extension Super Super Bio-Curcumin since it's cheaper and feel it has helped a lot with inflammation. (eg: I can do the insanity workout and not have sore muscles the next day.)

Why did your son stop the LDN? There are several FB groups for Low Dose Naltraxone too.

LDN has been shown to reduce symptoms of autoimmune disorders such as fibromyalgia/Chron's and has a big following with the MS community.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2891387/
http://crohnsend.com/documents/ldn_improves_crohns_2007.pdf

mytwosons
08-04-2012, 11:30 AM
My son had been on it for years - maybe 5? He is considered recovered from autism and no longer seems dependent on his supplements.

I used to apply the cream around 10 pm when I went to bed. However, he stays up pretty late now and if I apply it at 10, it wakes him up.

We didn't stop due to anything negative with LDN, it just became a hassle that I'm not sure we need to keep up with.

Melbel
08-04-2012, 12:24 PM
My son had been on it for years - maybe 5? He is considered recovered from autism and no longer seems dependent on his supplements.



Recovered from autism - words that make me smile. I am so happy for you and your son. :yay:

MamaKath
08-04-2012, 10:55 PM
He is considered recovered from autism and no longer seems dependent on his supplements.

:cheerleader1: That is awesome to hear!

Melbel, thank you for posting the information. Interesting reading!

pastrygirl
08-04-2012, 11:29 PM
Interesting about the LDN! I was on it for cycle issues. I saw a Napro physician, which is related to the Creighton model of NFP (natural family planning). My sub-fertility and other cycle issues were somehow related to what LDN can fix/improve. My PCP was so intrigued by my experience that she called me at home to ask me for more information! Though I never really fully understood why I was taking it and how it would help...

Eta: my husband just reminded me that it was for suspected silent endometriosis. I was only on it for about 4 months, but the doctor also said I should see a big mood improvement. Hard to tell, because I had ppd and was also on an antidepressant.