hyperimmunity

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antoine
Posts: 23
Joined: Tue Mar 15, 2016 8:47 pm

hyperimmunity

Postby antoine » Fri Sep 29, 2017 7:35 pm

PLEASE HELP!!! what would you do for a hyperimmune kid? no response to ANYTHING!
LDN, we just started it. what else?

What can make a child to have NO reaction to any pill/supplement either good or bad. he never gets sick either

FatherOf2
Posts: 1591
Joined: Mon Mar 11, 2013 1:37 am

Re: hyperimmunity

Postby FatherOf2 » Sat Sep 30, 2017 12:45 am

This is a very important topic. I am surprised other people haven't jumped into the discussion yet. My son too rarely gets sick with flu or colds. I believe it is a sign of overactive immune system. My theory is that vaccines did it, activated immune system (antibodies, B cells, etc), and now it is attacking your own organs like brain (encephalitis), myelin (multiple sclerosis), thyroid (Hashimoto's), joints ( rheumatoid arthritis), etc. One day they will add autism into this list of autoimmune diseases. You should read this forum: http://forums.phoenixrising.me/index.php?threads/sick-but-never-sick.39474/

So, what do we do? Reseting the immune system with bone marrow transplant would do the job, but too radical. Rituximab would destroy B cells and reset the immune system too, but may not be suitable for children. LDN seems like a preferred treatment for the above conditions (must be taken with vit D to be effective). GcMAF is also mentioned, but may act opposite to LDN (one activates macrophages, the other suppresses them). Inosine pranobex, antiviral and immunomodulator, benefits 6 out of 10 CFS patients. Prednisolone should help too, but temporary. Suramin, but not FDA approved and temporary too. One interesting fact about CFS, which is another autoimmune disorder resulting in 'no colds or flu', is that a "decreased NK cell activity is found in CFS patients and correlates with severity of symptoms" (from wikipedia). Some other ideas are here: https://livingwithchronicfatiguesyndrome.wordpress.com/2011/01/08/10-of-the-most-effective-treatments-for-cfs/

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: hyperimmunity

Postby Nikkie111 » Sat Sep 30, 2017 2:17 pm

FatherOf2 wrote:This is a very important topic. I am surprised other people haven't jumped into the discussion yet. My son too rarely gets sick with flu or colds. I believe it is a sign of overactive immune system. My theory is that vaccines did it, activated immune system (antibodies, B cells, etc), and now it is attacking your own organs like brain (encephalitis), myelin (multiple sclerosis), thyroid (Hashimoto's), joints ( rheumatoid arthritis), etc. One day they will add autism into this list of autoimmune diseases. You should read this forum: http://forums.phoenixrising.me/index.php?threads/sick-but-never-sick.39474/

So, what do we do? Reseting the immune system with bone marrow transplant would do the job, but too radical. Rituximab would destroy B cells and reset the immune system too, but may not be suitable for children. LDN seems like a preferred treatment for the above conditions (must be taken with vit D to be effective). GcMAF is also mentioned, but may act opposite to LDN (one activates macrophages, the other suppresses them). Inosine pranobex, antiviral and immunomodulator, benefits 6 out of 10 CFS patients. Prednisolone should help too, but temporary. Suramin, but not FDA approved and temporary too. One interesting fact about CFS, which is another autoimmune disorder resulting in 'no colds or flu', is that a "decreased NK cell activity is found in CFS patients and correlates with severity of symptoms" (from wikipedia). Some other ideas are here: https://livingwithchronicfatiguesyndrome.wordpress.com/2011/01/08/10-of-the-most-effective-treatments-for-cfs/

You see I'd say anyone who never gets ill has underactive immune hence all the viruses are stored inside the cells! It'd be fantastic if we noticed our kids get ill cause it means their body is actually showing the symptoms of the illness which as we now know is not the body itself it's the immune working!
Cycloferon and immunovir with antivirals were great for us but I tried them cause I was pretty convinced we had viral/immune issue especially as he used to have moloscum couple of years ago, never had fevers after vaccines etc... all these did nothing for my second one who clearly has different issue
LDN didn't do much for any of my kids we saw more from cycloferon/insosine pranobex

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: hyperimmunity

Postby Nikkie111 » Sat Sep 30, 2017 2:41 pm

Forgot to say the two meds I mentioned are specifically targeting NK cells increase which is usually low because of viruses

FatherOf2
Posts: 1591
Joined: Mon Mar 11, 2013 1:37 am

Re: hyperimmunity

Postby FatherOf2 » Sun Oct 01, 2017 12:52 am

Nikkie111 wrote:...I'd say anyone who never gets ill has underactive immune hence all the viruses are stored inside the cells! ...

That might be true because most treatments for CFS/ME are antiviral and immunostimulatory. It is still hard for me to imagine that a flu virus can live inside the body undetected without destroying the body.

I strongly recommend reading this: http://paradigmchange.me/wp-content/uploads/2014/11/ME-CFS-Treatments.pdf I didn't know that CFS/ME is so similar to autism, from symptoms to treatments. CFS is almost like an adulthood autism. Even this statement: "Many [CFS] patients report first getting sick, or permanently getting much worse, after getting a vaccine". The document goes through various treatments of CFS including immunomodulators. At the end, there are ratings of efficiency of various treatments. From the top:

60%+ Effectiveness:
Hormones: T3. 65%
Drugs: Low Dose Naltrexone (LDN). 62%

50%+ Effectiveness:
Drugs: Klonopin. 51%

40%+ Effectiveness:
Drugs:
Stimulants. 49%
Tramadol. 49%
Ritalin. 47%
Antivirals. 45%
Xanax. 42%
Baclofen. 41%
Ibuprofen. 41%
Supplements/Nutrition:
B12 Injections. 46%
Probiotics. 42%
Betaine Hcl. 40%
Electrolyte beverages. 40%

30%+ Effectiveness
Supplements/Nutrition:
Oral magnesium. 39%
Malic acid. 38%
NAC. 38%
Sublingual B12. 36%
D-Ribose. 34%
Myers’ Cocktail. 34%
Acetyl-L-Carnitine. 32%
B Vitamins 32%
Chinese herbs. 32%
Liposomal glutathione. 32%
Anti-Yeast Diet. 31%
Vitamin D. 31%
Omega 3. 31%
Cerefolin. 31%
Ionized water. 30%
MSM. 30%
Hormones:
Testosterone. 37%
Bioidentical Hormones (e.g. progesterone). 36%
Cortef. 35%
DHEA. 33%
Melatonin. 31%
Antibiotics:
Doxycycline. 39%
Antibiotics. 37%
Antidepressants:
Cymbalta. 38%
Wellbutrin. 35%
Other Drugs:
Guaifenesin. 38%
Chelation. 36%
Immunovir. 36%
Provigil. 35%
Antihistimines. 34%
Naproxen. 34%
Beta Blockers. 31%
Neurontin. 31%
Tylenol. 31%
Benadryl. 30%
etc

I think CFS patients are as clueless as we are and would try anything to help. Remarkably, LDN and T3 are on the top of the list. By the way, we visited an endocrinologist last week. I told the doctor all our concerns about weight, dry skin, cold extremities, anxiety, possible adrenal fatigue or thyroid dysfunction, mood fluctuations with sugar level. She said it was nothing, but still prescribed a lot of tests so that I felt comfortable.

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: hyperimmunity

Postby Nikkie111 » Sun Oct 01, 2017 3:15 am

Oh yes CFS patients would probably be ASD as kids under different circumstances....
This forum has helped me enormously it has fantastic ideas : http://forums.phoenixrising.me/index.php

I ll have a read on what you sent thank you!! lDN is good for chronic pain so I can see how it helps

Good luck with endocrinologist, let's see how t3/t4 comes, we have an issue there as well

antoine
Posts: 23
Joined: Tue Mar 15, 2016 8:47 pm

Re: hyperimmunity

Postby antoine » Thu Oct 05, 2017 6:01 pm

You are right on Fatherof2, yes we both have overactive immune system, he lost the ability to develop a fever after antibiotics and vaccines. So, yes viral load has been on my mind. but he won't get better with antivirals; his ASD is a weird one; we are puzzled. i am kind of impressed you mentioned suramin, since I was speaking to a researcher and she mentioned that would be a good one to try (she also suggested hemp oil)
I really have no idea what works for him and what's not, since I get no reaction! his receptive and cognitive ability skyrocketed since a couple of months ago; But he simply cannot say a word, he understands perfectly what I tell him, nods for yes and shakes head for no, but still super apraxic (his global apraxia is transforming to a severe verbal one)
Buhner suggests some immunomodulatory herbs... maybe I will give them a try along with LDN. now he is on 3mg of LDN at nights.

You guys are amazing, thanks for giving me ideas (Nikkie and Fatherof2)

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: hyperimmunity

Postby Nikkie111 » Fri Oct 06, 2017 4:36 am

antoine wrote:You are right on Fatherof2, yes we both have overactive immune system, he lost the ability to develop a fever after antibiotics and vaccines. So, yes viral load has been on my mind. but he won't get better with antivirals; his ASD is a weird one; we are puzzled. i am kind of impressed you mentioned suramin, since I was speaking to a researcher and she mentioned that would be a good one to try (she also suggested hemp oil)
I really have no idea what works for him and what's not, since I get no reaction! his receptive and cognitive ability skyrocketed since a couple of months ago; But he simply cannot say a word, he understands perfectly what I tell him, nods for yes and shakes head for no, but still super apraxic (his global apraxia is transforming to a severe verbal one)
Buhner suggests some immunomodulatory herbs... maybe I will give them a try along with LDN. now he is on 3mg of LDN at nights.

You guys are amazing, thanks for giving me ideas (Nikkie and Fatherof2)


You will really benefit doing an NK cells test! Low NK cells means you pretty much lost the ability to fight viruses and certain meds can really help!
Maybe have a look to see who's doing this in your area
Good luck

i-jerry
Posts: 138
Joined: Wed Dec 21, 2016 7:46 pm

Re: hyperimmunity

Postby i-jerry » Thu Oct 12, 2017 7:00 am

Nikkie111 wrote:
FatherOf2 wrote:This is a very important topic. I am surprised other people haven't jumped into the discussion yet. My son too rarely gets sick with flu or colds. I believe it is a sign of overactive immune system. My theory is that vaccines did it, activated immune system (antibodies, B cells, etc), and now it is attacking your own organs like brain (encephalitis), myelin (multiple sclerosis), thyroid (Hashimoto's), joints ( rheumatoid arthritis), etc. One day they will add autism into this list of autoimmune diseases. You should read this forum: http://forums.phoenixrising.me/index.php?threads/sick-but-never-sick.39474/

So, what do we do? Reseting the immune system with bone marrow transplant would do the job, but too radical. Rituximab would destroy B cells and reset the immune system too, but may not be suitable for children. LDN seems like a preferred treatment for the above conditions (must be taken with vit D to be effective). GcMAF is also mentioned, but may act opposite to LDN (one activates macrophages, the other suppresses them). Inosine pranobex, antiviral and immunomodulator, benefits 6 out of 10 CFS patients. Prednisolone should help too, but temporary. Suramin, but not FDA approved and temporary too. One interesting fact about CFS, which is another autoimmune disorder resulting in 'no colds or flu', is that a "decreased NK cell activity is found in CFS patients and correlates with severity of symptoms" (from wikipedia). Some other ideas are here: https://livingwithchronicfatiguesyndrome.wordpress.com/2011/01/08/10-of-the-most-effective-treatments-for-cfs/

You see I'd say anyone who never gets ill has underactive immune hence all the viruses are stored inside the cells! It'd be fantastic if we noticed our kids get ill cause it means their body is actually showing the symptoms of the illness which as we now know is not the body itself it's the immune working!
Cycloferon and immunovir with antivirals were great for us but I tried them cause I was pretty convinced we had viral/immune issue especially as he used to have moloscum couple of years ago, never had fevers after vaccines etc... all these did nothing for my second one who clearly has different issue
LDN didn't do much for any of my kids we saw more from cycloferon/insosine pranobex


Hi Nikkie,

do you do regular urine check for your son when taking Valtrex? The first 6 weeks his urine test only shows acid, but protein, leukocytes and nitrites are negative. On the last two weeks his urine test shows very high in leukocytes and nitrites, also he got puff eye like a goldfish :x , and then i stopped valtrex since 3 weeks ago.
I rechecked his urine on yesterday, leukocytes and nitrites are negative again but protein still there. I'm thinking does it normal when take valtrex.
My son has very good gains with valtrex, and we are thinking to restart but might do on and off this time. Which medicine is the best for your older son, valtrex, cycloferon, insosine pranbex?
He didn't have rash or fever when he taking valtex but he had massive rash on virastop. But with valtrex he has more language and engage with others.
Thanks a lot

Nikkie111
Posts: 322
Joined: Thu Sep 24, 2015 6:26 am

Re: hyperimmunity

Postby Nikkie111 » Thu Oct 12, 2017 9:29 am

Maybe it's not the valtrex that causes the urine issues maybe it's something else? I wouldn't go by the rash etc just go with the behaviour!
Meds wise yes we alternate with cycloferon and groprinosin but they all have their own side effects...
Have you tried any other natural ones? Like monolaurin?
Have you asked doc or googled what causes protein in urine?

The puffiness is odd, my kid used to have it I thought it was a thyroid issue but lately he doesn't have it
Have you checked his thyroid?

Aspie1983
Posts: 11
Joined: Mon Oct 16, 2017 8:56 am

Re: hyperimmunity

Postby Aspie1983 » Thu Oct 19, 2017 12:18 pm

As far as I know LDN is used to increased opioid and immune system activity... not to decrease it... or?


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