Acute Disseminated Encephalomyelitis (ADEM) Support Group

Update on my sons status October 19, 2017


#1

My son was diagnosed with ADEM April 2015 and is still in recovery. Since my last update my son is now at home and the rehab center feels that he can heal better at home.
I took my son to a functional medical doctor. He ordered some blood test that was not done since the brain injury. The blood tests showed that his testosterone levels were that of a 75year old man and my son is 33 years. We were really struggling with his anger outburst and low testosterone levels contributed to his depression and aggressive behavior according to his doctor. Low testosterone also contributed to his, weight gain, and lack of motivation to learn. To increase his testosterone levels he was given bio identical testosterone gel to be used once daily. He also found that his thyroid levels were extremely low and recommended Idorol – 7 tablets a day. I have managed to wean him off most of the psychiatric drugs. In the process he has lost 30lbs so far. The doctor suggested we place him on a Ketogenic diet as it will also help the brain heal and it is beneficial to his overall health.
He is on the following Prescription Meds:
• ¼ Wellbutrin (bupropion HCL XL) per day. (The doctor recommends I continue to wean him off the antidepressants at 10% reduction of the antidepressant every 2 weeks.)
• 1 garpentin at night. (300mg) In order to minimize the side effects of the Gabapentin he suggested we give him a low dose of 300mg in the evening and (it does cause aggression so we give it to him at night. We also give him Hemp cbd oil for breakfast and lunch to help as an anti seizure medication but we have increased the dosage from 2 droppers to 4 droppers per day. We use the Charlotte’s Web one as there are so many on the market that is mixed with coconut oil and does not have the required amount of CBD. The CBD oil also helps to manage depression his depression. The downside is that Hemp CBD oil is really expensive but I want to mitigate the side effects of the anti seizure medication and anti depressants. The Hemp CBD oil also helps him sleep and calms him down. The doctor agreed that it would be ok to lower the anti-seizure meds (due to their side effects)and since on this protocol we have no seizure activity to date. He also takes the following supplements that help with depression and to heal the brain and rebuild the myelin. High doses Magnesium and vitamin E for example help with depression, seizures, and sleep and to heal the brain. He suggested we increase the vitamin D to 15 000iu per day. So he is on the following supplements for depression to help heal the brain and prevent seizure activity. :
• Vitamin D - 15, 000iu
• Biotin - 10 000iu
• Vitamin B12 - 2500 mpg
• Niacin – 8 000mg a day (helps with depression and to regrow the myelin)
• Magnesium Citrate 400mg - 3 times a day (1200mg per day)
• Vitamin B1 - 500mg - 3 times a day (1500mg)
• Vitamin B2 - 100mg - 3 times a day (300mg per day)
• B Complex ” 100” - 3 times a day
• Vitamin E - 400 IU - 3 times a day (1 200 IU a day)
• Omega 3 -950mg -3 times a day (2850mg per day - EPA - 504mg(1,512 per day) and DHA -378mg (1,134 per day) – Helps with brain healing.

He suggested we do a gut bacteria test to ensure his gut is healthy as there is a brain gut connection and also suggested we do a Spect Scan with the Amen clinics to ascertain exactly where the damaged areas in the brain are so that we can target rehabilitation more precisely and the scan will help in suggesting how many ozone treatments are needed and the amount of hyperbaric oxygen therapy required to accelerate the brain’s healing. We have done 3 ozone treatments already (blood is extracted and oxygen added and to IV and placed back into his body.

The doctor also mentioned that aerobic interval training has a similar effect as ozone therapy and that Vibration Platform workout machines are also beneficial in helping the brain heal.
He also recommended the use of the following supplements to help heal the brain heal:

• Brain Octane Oil
• Alpha Gommunicate PC) 2 capsules daily
• Aniracetam Powder
• Noopept
• Picamilon

Our functional medical doctor stated that his purpose is not to replace the treatment and advice of our neurologist but that his purpose is to try and accelerate the brain’s healing capabilities.

My son just had another round of chemo last week. (Rituxan- given every 6 months to prevent an ADEM attack as his attack was so severe.)
I feel we are still a long way off from recovery and we are not sure how far he will heal but he has not reached a plateau yet. Contrary to what one neurologist has told us he continues to heal very slowly. His long-term memory seems to be good but still struggles with short-term memory and he has just started using short sentences. Speech is still not spontaneous and an issue but he seems to understand everything. He still struggles to communicate so we are not totally sure of what his cognitive ability is because of his inability to effectively communicate. Since off the psychiatric drugs and this is my personal experience as everyone is different he seems to be more present, aware and calm and less aggressive. We are a long way off from recovery but he is easier to live with minus all the prescription drugs. He no longer needs Valium to calm him down or sleeping medication. His attention span has improved and enjoys watching movies, plays games and loves to watch science experiments and scientific equation formulations. This is quite a journey for our family but with the help of our Functional Medical doctor we have been given renewed hope.


#2

Is your neurologist and PCP aware that this quack is giving your son two of the most neuro toxic and kidney toxic compounds known to man? Compound that are illegal for treatment in most developed countries? Ozone has no relationship to oxygen and will bind with anything. Idorol is iodine. A first year physiology student knows thyroid levels will be low when Free T levels are low. but the numbers are meaningless without SHBG levels. free T will be effected when any corticosteroids are used and will be for some time following. Those steroids saved your sons life with the initial attacks Replacement therapy only increase the chances of permanent thyroid damage and several forms of cancer.

Of course he is only supplementing what the real docs are doing, thats what keeps these guys out of prison (well not all of them last may 55 licensed naturopaths in Oregon and California were succesfully prosecuted for the use of IV OZONE) , but it doesn’t stop them from insinuating they have “special knowledge”. ADEM recovery happens naturally after the acute episode(s) Some residual effects from severe attacks can be permanent and that is a different matter. But that is damage from the disease not the disease. All this quack is doing is endangering your sons health/recovery taking a lot of your money based on voodoo/unproven science, and taking credit for what the body is doing on its own (if allowed)

Weaning off the psychotropics prolly has had a good effect, they were never intended to be used long term anyway… Good luck its clear your son has one great thing going for him, a ma that really cares.

TJ


#3

Thanks for your concern I will discuss this with him. He is a medical doctor and studied here in the United States. We do blood work periodically to make sure that his kidneys and liver is not compromised and to check his hormone levels as well. But steriods did nothing for my son’s ADEM. He received steriods April 2015 and it is now October 2017 (around 2 1/2 years later) Nor did plasma exchange. It was chemotherapy and many rounds chemo that stopped his lesions from being active. They were growing from April 2015 and the MRI only showed no active lesions around December 2015/January 2016. Thyroid issues run in our family. My husband and daughter and mother-in-law are on conventional thyroid medication. Since his intervention I can safely say that I can live with my son. He was extremely aggressive and made our lives a living hell with the psychiatric drugs. It was a cycle of antidepressants , then vallium to calm him down and the sleep meds to get him to sleep. Some nights we were up till 4am. My son sleeps soundly now and he is now a pleasure to be around. He is showing an interest in learning. Something we could not do for some time. He is in a great mood most of the day.
(This doctor saved my sister life. She had 4th stage cancer. Doctors gave her 3 months to live and said she would not be cured. Her cancer markers are now 0. She had cancer in the breast, lungs, liver, bladder, spine, bone and brain and is now cancer free.) The conventional neurologist told us my son will not heal any further and we should file for disability which we have not done because we still see very small improvements. So, I personally feel that we have to try alternative therapies. His personal trainer made the comment that he has recovered 75% based on the time she first started training him. I spend plenty of time with him and although his brain is injured I am still learning from him. But I will discuss your concerns with the Functional medical doctor as I know it comes from a sincere place for my son’s well being.


#4

Alternative therapies are certainly a reasonable place to go, if they are well monitored. Don’t discount the Disability though, its never an end but often opens a lot of doors including voc rehab. The disability payments can take a lot of pre$$ure off and make your alternative therapies easier to access… Like I said earlier with a mom like you in his corner things do look brighter for him. Please stay in touch we are all behind you…

In regards to steroids, their FIRST job is in an acute situation to prevent additional damage in an attack. They do that job very well virtually every time. Without them its nearly impossible to stop the progression. Sometimes they bring inflammation down with additional doses and if they do it quickly that’s great But agree with you they very quickly become the “devils drug” and often wonder if ongoing use of them is worth the adrenal damage. (says the guy who uses them daily to keep walking)

TJ