Cameron Can See!
We have had another long two months with ups and downs. Our first highlight came shortly after beginning a new antibiotic for Borrelia. The first few days after beginning a new antibiotic Cameron began complaining about light sensitivity and was scratching his eyes intensely. He had an IV scheduled (Cal-EDTA, Vitamin C, glutathione, and trace minerals) the following Friday (a bi-weekly appointment), followed by a day of oral DMSA on Saturday. The next day he walked into my study with wide eyes and smiling. Cameron said to me, "Mommy, your study is red!" I replied "yes," and he continued "is the paint wet? Can I touch it?" I responded, "no it's not wet. The room has always been this color." And it has. The walls in my study were burgundy when we moved into the home almost four years ago. There is a built in desk and bookshelves that are walnut, but the rest of the room is burgundy. However, Cameron has never been able to see it all before.
His field of vision has been so narrow (probably for the past 5 or more years). We had been working on correcting his vision. First, by getting his right eye functioning again and then working toward expanding his field of vision. However, since he started to become chronically ill earlier this year, we have not been doing any specific therapy for his vision. I can only attribute his vision correction to either the antibiotics or the chelation therapy. I suspect that it was a combination of the two. There is no way to know for certain. However, it has been a joyous experience to watch Cameron "see" things for the first time.
He began noticing all kinds of things outside the van window, pointing out things in office buildings and other places, and experiencing life in a whole new way. All of these locations were places Cameron has been several times, but because he couldn't see (except for a very narrow field that was directly in front of him), he never really experienced many things. There was no example more poignant than that of our recent return to Disney World in August. Cameron has been to Disney World several times and has visited Epcot many times. However, on our first day in Epcot Cameron exclaimed to me, "Look mommy, a big golf ball!" He was referring to Spaceship Earth of course. I have pointed this attraction out to him several times on other trips with no response from him. However, this time he was pointing it out to me in awe and excitement. It was truly his first time seeing this giant attraction in its entirety. He continues to point out lights, ceilings, buildings, etc that he has been in the presence of dozens of times but is experiencing them for the first time this last month. It has been both very exciting and yet very sad to be reminded about just how much has been stolen from him the past 5 years.
Follow Up Appointment
We returned to Dr Usman's office last month and learned very good news. Cameron's HepB titers are finally headed downward. They are still extremely high (just over 150, when they should be below 13), however much lower than the 300+ when we tested last time.
However, his strep titers are still disappointing. Having had strep yet again this summer (that makes 4 times now) he still does not have any strep antibodies. This means that his immune system still hasn't acknowledge the strep and it's likely still present in his body. We are hoping that as his HepB titers continue to drop his immune system will be able to function more properly and address some of the other viruses, bacteria and parasites residing in his body.
The other good news was that Cameron is still dumping metal. Lots and lots of metal. Lead, mercury, cadmium, aluminum, uranium are among his highest. Some days I look at his test results displaying all of the heavy metals and creatures (bacteria, viruses, parasites) that are in my baby's body and wonder how on earth he has survived all of this.
Cameron hasn't been able to use the HBOT in several months because of illness. His most recent lab tests indicate that he currently is experiencing too much oxidative stress to return to the HBOT at this time. So we continue our break from diving until his lab tests indicate that it is safe to return again.
We returned home with a plan to: continue to remove lead and the mercury that it is still blocking, aggressively go after the "bugs" (clostridia, parasites, yeast, Borrelia, etc), continue to address his elevated hepatitis titers and improve his immune system. Some interesting changes that we made to his protocol in keeping with this plan were: the addition of SPS30 (daily before meals, supplements and medications to help break down bacteria and improve the efficiency of the antibiotic therapy) and Glycine (before IV Chelation therapy to improve the efficiency of the chelator and promote detoxification). So far Cameron appears to be responding positively to each of these changes but future lab work will hopefully confirm this.
Mommy Spirals Downward
We all began our most recent antibiotic therapy for Borrelia in August. The children appeared to be handling it very well. I did not have as wonderful of an experience. Within a few days of beginning the medication I began feeling horribly. I assumed it was a Herxheimer response and was miserable but hopeful. I stopped taking the medication and took all of the recommended steps to dealing with a Herxheimer but continued to a downward spiral. Unfortunately, we had to get on an airplane for a planned family vacation to Disney World just as I was getting to my worst. By the time we reached our hotel I was doubled over in pain.
We attempted to have some fun the following day. I did call my LLMD and our homeopath and received some basic advice and our homeopath Fed Ex'ed some remedies to me. However, it was obvious I was in need of medical attention by the time afternoon arrived. We called my in-laws and flew them into Orlando to help with the kids so that Scott could take me to the ER that night. We didn't want to chance exposing Cameron to any illnesses at the hospital but knew I was going to need to be seen by a doctor.
When I was seen by the ER doctor he felt certain that it was my gallbladder and anticipated having to remove it that night. I had a bunch of blood work done, was given an IV of several medications and received an ultrasound. The doctor determined that my gallbladder was severely inflamed and that it was likely caused by the antibiotic I had been on. I did not require surgery, but did have to remain off of the instigating antibiotic, was given a prescription for pain and abdominal cramping and was told to rest (yeah right, I don't think I've "rested" since being placed on bed rest when pregnant with Cameron and now we were in Disney World!).
By the end of our vacation I was a physical mess. Having gone off of the antibiotic and been pumped full of other conventional medication in the hospital; my immune system was completely shot and most of my Lyme symptoms had returned with vengeance. I had an extreme chill and a very bad feeling on the airplane ride home. The next morning I awoke very sick. I developed first an upper respiratory infection and then a lower respiratory infection. I was very sick for several weeks. However, my immune system simply wasn't responding. My fever was very low (76.4 F). The children also developed a respiratory infection but their immune systems appeared to address it as they gratefully developed a fever and overcame the virus within a reasonable amount of time. I'm continuing to attempt to rebound today.
Love to Jenny!
For those of you who have missed it, Jenny McCarthy is on a national tour promoting her new book "Louder than Words," and spreading the word about Autism treatment and recovery. It's taken 20 years, but finally someone in the public eye has begun to speak the truth about the triggers to autism and the treatment that can reverse the damage and diagnosis. No one would have guessed that person would be Jenny McCarthy and that she would do such a phenomenal job of getting the information out there in a compassionate and intelligent manner. I am so very proud of her and even more thankful to her for continuing on and speaking for all of our children.
To date, she has appeared on national television on Oprah, 20/20, Good Morning America and The View. She is scheduled to appear on Larry King Live tomorrow. She has been fearless, honest and poignant. For the most part she has been received kindly by these shows. That was a pleasant surprise since others have been silenced in the past. However, I was disappointed and angry by the lack of respect she was given by host Barbara Walters on The View who made it clear that she did not believe that Autism was reversible and accused Jenny of "giving parents false hope." I've forwarded my thoughts about the show and my disappointment about the lack of respect shown by Barbara Walters to Jenny and other Autism parents of recovering children. I urge you all to email Barbara Walters at The View and let our voices be louder than that of the show sponsors from the pharmaceutical companies.
You are my HERO Jenny McCarthy!
This site was last updated 01/10/09