Low Dose Naltrexone

We began at 1 mg of low dose naltrexone at bedtime as per the doctor’s instructions in March. Generally the starting dose is higher but she wants to eliminate/reduce any side effects if possible. From what I read there are usually few side effects and they usually subside in the first week.

The primary symptoms usually reported are sleep disturbances which can be insomnia or vivid dreams.

His first night at 1 mg, he did report bad dreams and he wasn’t too happy about it. The next night I only gave half of a milligram instead. That seemed to eliminate the bad dreams but he is having trouble getting to sleep. He either up late or waking up in the middle of the night.

After 2 weeks I increased the dose to 1 mg as per the doctor. So nightmares are back and he’s not happy at all about that. Who would be? I talked to the doctor again to clarify how long and if that will go away. She suggested we move dosing to daytime which would entirely eliminated the issue.

That did eliminate the issue thankfully. Today we moved up to 1.5 mg. Our target dose is 3.5mg. In three months blood work will be done to see if the viral issue is gone.

We are also using immune supporting herbs and antiviral herbs daily.

I am adding lysine now that I found one that dissolves in juice easily.  Ironically on all these antivirals and there is no yeast overgrowth so that’s a win I owe to chelation.

I was going to also add in olive leaf but I cannot gag down the olive leaf tincture I bought…so that’s not going to work. We have not started niacinamide yet but it’s on my radar because of its usefulness in autoimmunity but I do have him on selenium daily.

I will post when I have more conclusive results from doing the antiviral/immune regulation treatment. I suspect I won’t know more until summer when we see his blood work. To date, sensory is unchanged but hopefully this will help his immune system and thyroid function.

Viruses? Still?

Viruses? Still?

We went for our follow-up visit with our holistic doc. We first saw her in the fall of 2016 and after some supplementation it was time to repeat some blood work and see where to go next.

I was fairly surprised at the blood results really. Some of his deficiencies are improving which is great. Vitamin D is up to 60, so we can cut the dose back to 5,000 IU per day. Iron still needs some work but it’s a lot better.

Of course his DHEA and pregnenolone are still low since he isn’t taking those, but they have gone up from the previous test. His morning cortisol is also excellent thanks to adrenal cortex glandular.

We have reduced his insulin and glucose but they need to come down further. So we will keep going with the chromium with meals and protein in his diet.

We need to add in sea salt to his water.

The real kicker here was his labs from November showed low neutrophils and high lymphocytes. The doctor thought maybe he was getting over a virus which I thought was odd because he hadn’t been sick. Well his new labs show even lower neutrophils* and higher lymphocytes and he hasn’t been sick. Couple that in with thyroid antibodies and the doctor suspects there is an underlying viral problem causing autoimmunity.

When I saw his new labs I had a flashback because I knew I had seen this before. I went over his old labs and sure enough in 2010 things were normal but in 2011, we saw neutropenia and high lymphocytes. (absolute neuts went from 3.9-1.5 which is why we stopped using DMSA)

After those abnormal 2011 labs I did an antiviral protocol for him. Which is why I’m surprised to see a viral problem.

It seems that might not matter because you can get a virus at any time and if you’re immune system isn’t strong enough to clear it….well, it’s going to stick around for a while. It is also possible he was exposed to a different virus recently. In either case, he’s had this lab profile longer than is normal for a passing cold or virus. It also lines up with the slightly elevated TSH I’ve been seeing the past few years.

So my new marching orders are to add:

I’m also considering Lysine for suspected Epstein Barr since it’s most associated with causing thyroid antibodies.

I am further considering niacinamide which is great for autoimmunity. I may end up  repeating our previous antiviral protocol with olive leaf and Virastop. (now called Enzyme Defense). I’m not sure.

The doctor has recommend Low Dose Naltrexone at 1mg at bedtime for 3 months. Then she wants to re-test him.  LDN makes has a great track record with correcting autoimmunity. (I might be next then…hmm?)

The key here is going to getting more supplements into him.

*low absolute neutrophils is covered in Fight Autism and Win Second Edition. The incidence of neutropenia on blood work is contradictory for the use of DMSA for chelation.

Antivirals and other thoughts

We have slowly worked our way up with the antiviral doses so that we are now at 4 capsules of Virastop and three capsules of Olive Leaf per day. In addition we also provide immune support as vitamin A, D, zinc, Immune Punch, and Transfer Factor.

English: Olive tree leaves, front and back sid...

English: Olive tree leaves (Photo credit: Wikipedia)

Each time we raise we add one capsules of either Virastop or Olive Leaf and wait to see what happens. Generally what we are seeing is that he becomes irritable, defiant and moody for a day or so when the dose has been raised. This passes within 24-36 hours.

What I don’t see are any gains at this point. I thought we had seen something when we first started but it’s gone or it was simply a coincidence. We are hoping something may change for him in regards to his sensory symptoms.

Initially he had made small improvements with chelation but we don’t see much change in sensory symptoms lately with chelation. We have completed 121 rounds and his last hair test in April revealed he was dumping a very high level of cadmium.

I know he isn’t done with chelation because he feels better on it and his behavior and energy levels are usually better. He also still experiences irritability post round. Am I convinced the metals are causing his sensory dysfunction? Well, I don’t really know at this point. Originally I had thought so for the first few years after having read studies and research linking aluminum and Lead to tactile defensiveness and sensory disturbances. As I see those levels declining on the hair test, this leaves the questions of what exactly is behind his significant sensory issues?

I hate to put all my eggs in any one basket but it seems that anti-virals are one of the final things we hadn’t done, so we are now. It will help prevent any future immune dysfunction if we do address viruses and bacteria anyway. I don’t know if it will reduce or cure his sensory symptoms.

We have been on a long road that is financially and emotionally draining and it has been worth it. We have so much farther to go. I will probably faint the day I get a normal hair test for him.

I remember five years ago when he was 3 1/2 years old and I had gotten his first hair test. I still recall that terrible feeling of panic and that huge pit that developed in my stomach. I haven’t been able to fully exhale since. I recall frantically posting the results on the forum for interpretation and Dr. Cutler telling me, “Just chelate him for 3 years to remove all those metals”. I had hope.

I did chelate for three years but we were not able to get 52 rounds per year. We are still chelating and it’s still helping him. But every week when it comes time to mix up the chelators for his round, I am reminded that this is taking a lot longer than I thought it would. I can’t just quit or give up. You don’t quit your children.

So tonight I will spend my evening playing with chelator powder dividing up doses and preparing myself not to sleep through the night for a few days again. Why? Because it makes my son feel better. I know my son will get better because he has already come so far. I can’t image how he would have been if I had not listened to Dr. Cutler and if I had continued to vaccinate, not reduced his metal exposure, and not chelated.

When my son is in a room of children with Autism or Asperger’s it becomes very obvious that he is functioning far above them. You can tell which children have had biomedical intervention and which have not. He shines in speech/social skills class because he understands concepts and social rules better than his Asperger peers. If you saw him on a playground, you would never know he had autism. If you talk to him for 20 minutes you may find his conversations are somewhat one-sided or that he goes on about his favorite things too long, but his differences are subtle. I attribute this to removing his metals because we have done little else.

My son never had ABA therapy or any of the other well-known Autism therapies. (RDI, HBOT, DAN doc, GF/CF, MB12 etc)

It’s very important parents know that this journey  requires perseverance. Determination and a lot of patience. You have to focus on the big picture and long-term.