My supplement/drug list for ASD

Discuss autism diets and biomedical treatments of autism.

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Nikkie111
Posts: 366
Joined: Thu Sep 24, 2015 6:26 am

Re: My supplement/drug list for ASD

Postby Nikkie111 » Tue Nov 21, 2017 4:44 pm

FatherOf2 wrote:Thanks, Nikkie. I will be looking for a local specialist in LDI. How do you know what the offending substances are? We did several allergy tests. Food wise, he is weakly allergic to milk. We tried GFCF diet several times for several months and never saw any results. He is also allergic to pollen according to a blood test. Perhaps that is something to try.

Fo2 friendly advice if you go for LDI do not go for anyone other than the one I went to! He's the LDI genius and I can't praise this guy enough . Anywhere else you're guarantee to fail - I ll ping you his details unfortunately very expensive

He does a very thorough consultation and based on what you tell him (based on test results or his behaviours) he will experiment on different antigens. For us it happened that the first antigen worked on 3rd dose he gave us.

You can try the LDA as well which is targeting food only!
Sending you his details now ....

Hope1222
Posts: 5
Joined: Wed Nov 01, 2017 4:09 pm

Re: My supplement/drug list for ASD

Postby Hope1222 » Tue Nov 21, 2017 5:27 pm

Dear FOf2,

I started giving Pharma NAC 900mg since 2 days but haven't seen any difference yet. I added extra vitamin C and Probiotics a week before. With the Probiotics I think I saw some difference but maybe NAC I have to give it some time? is the dosage of 900 mg enough once a day? I don't want to over do it either.

FatherOf2
Posts: 1675
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Tue Nov 21, 2017 6:05 pm

900mg of NAC seems right. I think Jarrow Sustain NAC is a better brand of NAC with longer half life. I am not giving NAC to my son because he seems to become irritable on it; self-injurious behaviors perk up too.

BlearyEyedAlchemist
Posts: 791
Joined: Mon Sep 22, 2008 8:54 pm

Re: My supplement/drug list for ASD

Postby BlearyEyedAlchemist » Tue Nov 21, 2017 6:25 pm

We've been doing allergy desensitization for 4 years. It's made by Embrace Pharmacy in Wisconsin. 3 drops under the tongue every day. It's an Rx prescribed by an allergist. Beats shots and is more effective for the long haul, so the research supports.

Marya
Posts: 218
Joined: Tue Feb 21, 2017 4:14 pm

Re: My supplement/drug list for ASD

Postby Marya » Wed Nov 22, 2017 3:11 pm

Nikkie111 wrote:Prescribed by an LDI trained MD !
Let me know about Galantamine I'm interested about but me as I can't afford LDI for me!!!

Hi Nikkie, will let you know.. Do you want to try it on yourself? Probably it won't work for you as it is a drug for Alzhaimers patients and now it has been a drug for Autistics/Aspergers. If you don't have a cognition issue or memory issue/learning disability, it won't help that much. I have a cognition issue, and sometimes I can't conclude the overall meaning from the conversations/sentences. I rearly forget the meaning of the words that I already know but sadly it happened. And most of times I can't get the sense behaind the words in the conversations! So boosting Choline was the solution for all of that and I became almost normal while taking CDP-Choline, so Galantamine should help as well. Btw my long term memory is kind of strong which helped me a lot in my studies. I rarely forget something I read and something I did or happened with me even it was 10 years ago so I'm grateful for that. But that wouldn't be enough without short term memory and good cognition. Boosting Choline also result in my behaviour, I became nice and friendly as I felt more confident. :D

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

Re: My supplement/drug list for ASD

Postby FatherOf2 » Thu Nov 23, 2017 1:40 pm

I have read a lot about LDI and listened to many videos on youtube in the last two days. LDI = homeopathy with some difference in scheduling the doses. From the interview on Sept 20 2017:
Elrod: How do LDA and LDI differ from homeopathy?
Dr. Vincent: Not much. The mechanism underlying LDI must be via vibrational resonance frequencies, similar to the way homeopathic remedies work. The main differences are the dosing schedule we find works with LDI (every 7 weeks rather than daily or multiple times per day), and the use of large numbers of antigens simultaneously. The harmonic signal seems to be mediated through the immune system to promote tolerance with LDI. Homeopathic remedies don't necessarily involve an immune system response. But, the exact mechanisms of both LDI and traditional homeopathy are really not well understood.

I think training the immune system to be tolerant to the offending antigens is a great idea but the way it is done in LDI is hard for me to accept. For example, an LDI practioner can suspect that a vaccine was responsible for autism and give a child tiny amounts of the antigens from that vaccine, which to me is equivalent to giving the same vaccine but at a very diluted dose. It is much easier for me to understand and accept an opposite treatment of avoiding the vaccines hoping that the vaccine action (immune memory to antigens) wears off over time (about 10 years). There was a mom here, who was giving her non-verbal autistic son mercury sulfide as part of his homeopathic treatment. This is where I draw the line of my acceptance of LDI/homeopathy. Most sane people would try to remove mercury from the body, not purposefully give it.

From reading, LDI practioners give many different antigens at once. But, how do they know which antigens should be given to a patient without doing extensive tests for antibodies to check which ones the patient has been exposed in the past? For example, my son has an allergy to dust and pollen as confirmed by a blood test. So, I am totally fine with LDA where my son is given tiny doses of dust and pollen (although he is already exposed to them through the environment). The original LDA/LDI used beta-glucuronidase enzyme, which apparently potentiated immune desensitization. But many LDI doctors are not even giving this enzyme anymore because they became convinced that it is the antigen that is important in LDI. But, if beta-glucuronidase is not included, then how giving allergens in LDA is different from being exposed to them in the daily life (drinking milk, eating bread, breathing dust and pollen)? So, allergen + beta-glucuronidase makes sense to me.

I also don't like when doctors don't even understand how their methods work and start talking about "vibrational resonance frequencies" of the body. To me that puts them into a category of holistic healers practicing quack methods such as NAET (Nambudripad’s Allergy Elimination Technique):

NAET stems from the theory that all organs have an electromagnetic frequency. Thus, practitioners work toward eliminating allergy symptoms by finding the frequencies in the body that are blocked and returning those frequencies to their original, healthy condition.

How it works: In the initial visit, a patient would likely undergo a muscle test (applied kinesiology) to determine what the body is allergic to. Some muscles may be weakened when allergies are triggered and energy flow is blocked. Once this is determined, the NAET practitioner will work on opening up the energy pathway through a technique in which the patient holds a glass vile containing the allergen, for 20 minutes. This is often done in tandem with acupuncture or acupressure.

Nikkie111
Posts: 366
Joined: Thu Sep 24, 2015 6:26 am

Re: My supplement/drug list for ASD

Postby Nikkie111 » Thu Nov 23, 2017 5:22 pm

FatherOf2 wrote:I have read a lot about LDI and listened to many videos on youtube in the last two days. LDI = homeopathy with some difference in scheduling the doses. From the interview on Sept 20 2017:
Elrod: How do LDA and LDI differ from homeopathy?
Dr. Vincent: Not much. The mechanism underlying LDI must be via vibrational resonance frequencies, similar to the way homeopathic remedies work. The main differences are the dosing schedule we find works with LDI (every 7 weeks rather than daily or multiple times per day), and the use of large numbers of antigens simultaneously. The harmonic signal seems to be mediated through the immune system to promote tolerance with LDI. Homeopathic remedies don't necessarily involve an immune system response. But, the exact mechanisms of both LDI and traditional homeopathy are really not well understood.

I think training the immune system to be tolerant to the offending antigens is a great idea but the way it is done in LDI is hard for me to accept. For example, an LDI practioner can suspect that a vaccine was responsible for autism and give a child tiny amounts of the antigens from that vaccine, which to me is equivalent to giving the same vaccine but at a very diluted dose. It is much easier for me to understand and accept an opposite treatment of avoiding the vaccines hoping that the vaccine action (immune memory to antigens) wears off over time (about 10 years). There was a mom here, who was giving her non-verbal autistic son mercury sulfide as part of his homeopathic treatment. This is where I draw the line of my acceptance of LDI/homeopathy. Most sane people would try to remove mercury from the body, not purposefully give it.

From reading, LDI practioners give many different antigens at once. But, how do they know which antigens should be given to a patient without doing extensive tests for antibodies to check which ones the patient has been exposed in the past? For example, my son has an allergy to dust and pollen as confirmed by a blood test. So, I am totally fine with LDA where my son is given tiny doses of dust and pollen (although he is already exposed to them through the environment). The original LDA/LDI used beta-glucuronidase enzyme, which apparently potentiated immune desensitization. But many LDI doctors are not even giving this enzyme anymore because they became convinced that it is the antigen that is important in LDI. But, if beta-glucuronidase is not included, then how giving allergens in LDA is different from being exposed to them in the daily life (drinking milk, eating bread, breathing dust and pollen)? So, allergen + beta-glucuronidase makes sense to me.

I also don't like when doctors don't even understand how their methods work and start talking about "vibrational resonance frequencies" of the body. To me that puts them into a category of holistic healers practicing quack methods such as NAET (Nambudripad’s Allergy Elimination Technique):

NAET stems from the theory that all organs have an electromagnetic frequency. Thus, practitioners work toward eliminating allergy symptoms by finding the frequencies in the body that are blocked and returning those frequencies to their original, healthy condition.

How it works: In the initial visit, a patient would likely undergo a muscle test (applied kinesiology) to determine what the body is allergic to. Some muscles may be weakened when allergies are triggered and energy flow is blocked. Once this is determined, the NAET practitioner will work on opening up the energy pathway through a technique in which the patient holds a glass vile containing the allergen, for 20 minutes. This is often done in tandem with acupuncture or acupressure.

Fo2 NAET and all these related agreed they are a bit wishy washy
LDI is a bit different and really it's not established enough otherwise everyone would go for it... for me the risk is similar to valtrex, the kids who took it did it for anything other than herpes and it worked. None of us knew what we were fighting we just took it
LDI uses an enzyme that has proved in many cases to train the immune to be tolerant, simple as that,sometimes it works sometimes it doesn't. Like any other drug it's based on observation and not on evidence
I pinged you with some info :-)

Marya
Posts: 218
Joined: Tue Feb 21, 2017 4:14 pm

Re: My supplement/drug list for ASD

Postby Marya » Thu Nov 23, 2017 8:31 pm

Fatherof2, have you tried 500mg Taurine during the day or for your son? I've treid it for the first time during the day, I put a little under my tongue, and it took the edge away! I was feeling a bit anxious and irritable, I assumed it is due to glutamate and that's why I took taurine and I felt much better afterwards! I will also try lemon balm supplements and see.
Have a look at this https://www.healthtap.com/user_question ... ate-levels
It is interesting! I didn't know about these. What I know Taurine and NAC are the best to reduce Glutamate.

FatherOf2
Posts: 1675
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Sat Nov 25, 2017 11:34 am

Marya wrote:Fatherof2, have you tried 500mg Taurine during the day or for your son? I've treid it for the first time during the day, I put a little under my tongue, and it took the edge away! I was feeling a bit anxious and irritable, I assumed it is due to glutamate and that's why I took taurine and I felt much better afterwards! I will also try lemon balm supplements and see.
Have a look at this https://www.healthtap.com/user_question ... ate-levels
It is interesting! I didn't know about these. What I know Taurine and NAC are the best to reduce Glutamate.

I haven't tried Taurine during a day. That seems like a good idea. Things that block NMDA receptors or reduce glutamate are:
- Magnesium
- NAC
- Agmatine
- Namenda (by Rx only)
- Huperzine A (also increases choline in the brain)
- Lamotrigine (by Rx only)
- Riluzole (by Rx only)
- Gabapentine (by Rx only)
- Amantadine (by Rx only)
- Alchohol

FatherOf2
Posts: 1675
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Sun Nov 26, 2017 9:37 pm

I tried Ritalin on my son today, 5mg single dose in the morning. This is the first ADHD med I have ever tried. It made my son irritable and defiant, hitting his own hand when upset. There were no signs of increased attention. It actually was worse. It is interesting that Rhodiola didn't cause these behaviors. So, raising dopamine alone doesn't help in my son's case.

Marya
Posts: 218
Joined: Tue Feb 21, 2017 4:14 pm

Re: My supplement/drug list for ASD

Postby Marya » Tue Nov 28, 2017 4:00 pm

FatherOf2 wrote:I tried Ritalin on my son today, 5mg single dose in the morning. This is the first ADHD med I have ever tried. It made my son irritable and defiant, hitting his own hand when upset. There were no signs of increased attention. It actually was worse. It is interesting that Rhodiola didn't cause these behaviors. So, raising dopamine alone doesn't help in my son's case.

Hi Fatherof2, sorry to hear that. My doctor wanted to prescribe me Ritalin several times but I refused and asked him to leave it for a while. I had a feeling inside me that ADHD drugs are not for me as I'm an anxious person and it would make things worse as in your son's case. I then came to the conclusion that my attention and cognitive issue is due to Choline deficiency. When I was on CDP-Choline my attention and cognitive were a way better. And I have let my doctor know, so he is willing to prescribe me Galantamine now! I think Rhodiola was good for your son because it doesn't raise Dopamine too much as Ritalin and maybe because it is an adaptogen. Are you still giving Rhodiola to your son?

FatherOf2
Posts: 1675
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Tue Nov 28, 2017 4:38 pm

Marya wrote:
FatherOf2 wrote:I tried Ritalin on my son today, 5mg single dose in the morning. This is the first ADHD med I have ever tried. It made my son irritable and defiant, hitting his own hand when upset. There were no signs of increased attention. It actually was worse. It is interesting that Rhodiola didn't cause these behaviors. So, raising dopamine alone doesn't help in my son's case.

Hi Fatherof2, sorry to hear that. My doctor wanted to presribe me Ritalin several times but I refused and asked him to leave it for a while. I had a feeling inside me that ADHD drugs are not for me as I'm an anxious person and it would make things worse as in your son's case. I then came to the conclusion that my attention and cognitive issue is due to Choline defeicency. When I was on CDP-Choline my attention and cognitive were a way better. And I have let my doctor know, so he is willing to prescribe me Galantamine now! I think Rhodiola was good for your son because it doesn't raise Dopamine too much as Ritalin and maybe because it is an adaptogen. Are you still giving Rhodiola to your son?

I stopped Rhodiola about 1.5 weeks ago. Then tried BH4 for a week after stopping Rhodiola. I didn't see anything from BH4. It probably doesn't cross BBB. Then tried Ritalin for just one day - it was a disaster. The next day (yesterday) school reported bad day, hitting teachers, cursing, crying. So, it is definitely not for my son. I will give him a week to settle back to pre-Ritalin state. My next trial is Cordyceps. After that, I will focus on immune system and stem cell regeneration. Did you know that the most commonly used anti-aging supplement is Astragalus? Apparently, it is very potent (in high doses) at increasing telomeres, the endings of DNA strands that protect our chromosomes. What is also amazing about this cheap herb is that it increases the number of circulating adult stem cells and activates T-cells and natural killer cells. It is also an anti-tumor agent.

By the way, I did try CDP Choline years ago and it helped but very slightly. I also tried it a couple of weeks ago and it made my son agitated and irritable. It could have been a coincidence. I will try it again during winter school break.

Marya
Posts: 218
Joined: Tue Feb 21, 2017 4:14 pm

Re: My supplement/drug list for ASD

Postby Marya » Tue Nov 28, 2017 6:08 pm

FatherOf2 wrote:I stopped Rhodiola about 1.5 weeks ago. Then tried BH4 for a week after stopping Rhodiola. I didn't see anything from BH4. It probably doesn't cross BBB. Then tried Ritalin for just one day - it was a disaster. The next day (yesterday) school reported bad day, hitting teachers, cursing, crying. So, it is definitely not for my son. I will give him a week to settle back to pre-Ritalin state. My next trial is Cordyceps. After that, I will focus on immune system and stem cell regeneration. Did you know that the most commonly used anti-aging supplement is Astragalus? Apparently, it is very potent (in high doses) at increasing telomeres, the endings of DNA strands that protect our chromosomes. What is also amazing about this cheap herb is that it increases the number of circulating adult stem cells and activates T-cells and natural killer cells. It is also an anti-tumor agent.

By the way, I did try CDP Choline years ago and it helped but very slightly. I also tried it a couple of weeks ago and it made my son agitated and irritable. It could have been a coincidence. I will try it again during winter school break.

I didn't know that Astragula helps with stem cells regenration! That's interesting indeed. I will give it a try but I'm focusing now on the brain and neurotransmitters.
I would be surprised if CDP Choline cause irritability. Maybe that's was due to something else or due to the high dose..etc

Marya
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Joined: Tue Feb 21, 2017 4:14 pm

Re: My supplement/drug list for ASD

Postby Marya » Tue Nov 28, 2017 8:28 pm

Fatherof2, I've tried B12 spray from California Gold Nutrition(500mcg) as Cyanocobalamin & Hydroxocobalamine. It is very cheap, and I think it is quite good but still can't judge it as today is my second day taking it. I'm taking it in terms of preservation more than for treatment but they said it should gives some mental clarity in anyways. I will update if I notice good results.

There is also something else that I think it really works but I'm still unsure about it. It is Spinach! I haven't had it for more than 4 years and I had it a few days ago for lunch with rice! It was WOW! Couldn't beleive how much mental energy and mental clarity gave me. Everyone were noticing this as I was talking like a professor! But as I said I'm not too sure if it was from Spinach or other stuff that I'm taking. So I will repeat that several times in different days and record.

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

Re: My supplement/drug list for ASD

Postby FatherOf2 » Wed Nov 29, 2017 1:00 pm

Marya wrote:I didn't know that Astragula helps with stem cells regenration! That's interesting indeed. I will give it a try but I'm focusing now on the brain and neurotransmitters.
I would be surprised if CDP Choline cause irritability. Maybe that's was due to something else or due to the high dose..etc

CDP choline increases dopamine receptor density possibly through uridine, which is a byproduct of its conversion to choline: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1908237/?tool=pmcentrez. In the past, CDP choline slightly increased my son's focus but after about 1 week caused irritability. This time, it caused nervousness and irritability the day we gave it to him at 100mg. But, we had been giving him Rhodiola at that time too. So, perhaps too much dopamine signaling caused this immediate negative effect.

By the way, NAC also has a confusing action on dopamine. At low doses it facilitates dopamine release, but at high doses it inhibits dopamine release: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044191/ I should have given a much higher dose than 300mg to my son to see a positive effect from NAC.

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

Re: My supplement/drug list for ASD

Postby FatherOf2 » Thu Nov 30, 2017 4:18 pm

I started giving my son Bumetanide again at 0.5mg 2x/day. I and my wife discussed our and school's observations of our son's behaviors ever since we stopped Bumetanide, and we both agreed that the behaviors became worse after stopping it. My wife typically criticizes all drugs and supplements that I try on our son. The fact that we both agreed that Bumetanide was helping means something. The problem with Bumetanide is that it takes time for it to start working and for its effect to disappear. So, it is hard to correlate any improvements or regressions with starting or stopping Bumetanide.

I also stopped Atlantic Krill Oil for 2 reasons:
1. I wanted to give my son a break from any dopamine raising supplements. Krill oil contains choline, which increases dopamine receptor density.
2. My son's most recent blood test showed high level of antibodies to thyroid. I became suspicious that Krill oil and possibly other fish oils contain high level of radioactive chemicals due to ocean pollution (Fukishima reactor accident, nuclear tests, fallouts, etc). There is a correlation between autoimmune disorders and exposure to radiation. When my son was 4, his hair test showed off the chart uranium levels, which I still can't explain, but we had been giving him fish oil by that age already. Because most autistic patients have a broken detox system, we have to be careful not to pile toxins into their bodies with supplements we give them.

Marya
Posts: 218
Joined: Tue Feb 21, 2017 4:14 pm

Re: My supplement/drug list for ASD

Postby Marya » Thu Nov 30, 2017 9:45 pm

FatherOf2 wrote:CDP choline increases dopamine receptor density possibly through uridine, which is a byproduct of its conversion to choline: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1908237/?tool=pmcentrez. In the past, CDP choline slightly increased my son's focus but after about 1 week caused irritability. This time, it caused nervousness and irritability the day we gave it to him at 100mg. But, we had been giving him Rhodiola at that time too. So, perhaps too much dopamine signaling caused this immediate negative effect.

Before I started taking Choline I was afraid if it would increases dopamine, so I looked it up at that time and found that it wouldn't be that much unless at very high dose. Do you know that there are some good amount of research where doctors and researchers give schizophrenics(assuming have high dopamine) CDP-Choline along with Galantamine and reported good results.
But, we had been giving him Rhodiola at that time too. So, perhaps too much dopamine signaling caused this immediate negative effect

You are so brave! I wouldn't take Rhodiola along with Choline not because of dopamine issue but I feel it would stimulate me too much. I might be mistaken but I'm treating myself as a 5 months old baby haha!

By the way, NAC also has a confusing action on dopamine. At low doses it facilitates dopamine release, but at high doses it inhibits dopamine release: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044191/ I should have given a much higher dose than 300mg to my son to see a positive effect from NAC

That's interesting. I used to take 500mg NAC daily and I'm now taking 600mg sustained one. I think NAC quiet my mind a bit.

FatherOf2
Posts: 1675
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Sat Dec 02, 2017 8:26 pm

Today I tried NAC again, different brand, 500mg. My son again became snappy. This time there was no doubt that NAC caused it. My son's reaction to NAC goes against all clinical trials, which claim that it reduces irritability. Quite an opposite in my son. Either dopamine receptors get tuned in the wrong way or a histamine reaction (NAC is known to increase histamine) or a sulfur reaction (my son reacted the same way to DMSA and ALA). Tomorrow I am starting a cordyceps trial.

Marya
Posts: 218
Joined: Tue Feb 21, 2017 4:14 pm

Re: My supplement/drug list for ASD

Postby Marya » Sun Dec 03, 2017 6:34 pm

Have a look at this paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3266205/
Fatherof2, have you tried a small dose of MSM? I know that your son may reacts badly to sulphur but since you already tried NAC, you probably would also try MSM. According to some studies autistics have low level of sulphur. And from my own experience, when I don't take any sulphur supplements I feel that I'm missing something. It really results in my mood and energy. I came to the conclusion that low level of sulphur in my body make me fatigue and depressed. So I'm keeping taking NAC, 600mg sustained, and yesterday I added 500mg MSM. CDP-Choline is doing the rest definitely. I'm thinking to add Bacopa in the future to my regime to balance dopamine and serotonin if they are high or low.

Marya
Posts: 218
Joined: Tue Feb 21, 2017 4:14 pm

Re: My supplement/drug list for ASD

Postby Marya » Sun Dec 03, 2017 9:36 pm

I tried Bacopa last year and some time this year. I tried Paradise then swtiched to Himalaya. I think Himalaya made me calm, not sure if it boosted cognition. However, I have read a lot of reviews about it and most of them claiming that it reduces anxiety and balance dopamine.
I'm thinking to try Natrure's answer this time, I was thinking of trying Doctor's best but it is out of stock!
I think I will take it on those days when I'm stressed or irritable but not everyday.


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