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Chronic Illness and Medical Mystery

Ozone Therapy

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We have a Promolife Generator for Ozone Therapy

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We wanted to try ozone to see if it helped us get well.

In 2020 we finally invested in an ozone generator. This has proven invaluable since then in my personal healing. We originally invested at the height of COVID in a Promolife package but honestly, we had been thinking about this for a long time, COVID was just what finally pushed us to pull the trigger.

Luckily, we already had a 5L oxygen concentrator that was easy to hook up to the pediatric flow regulator and get going fast. This setup has been super easy to use and because it is nice to look at and a fairly small setup, we are able to keep it readily accessible. Honestly, if it wasn’t always out, I don’t think we would use it as much. Especially as there is nothing worse than unpacking cupboards and trying to find things when you feel like absolute garbage physically.

Our go-to usage is ear insufflation, breathing through oil, and making ozone water. Side tip: If anyone has a funny-tummy ozone water is the best remedy we have found. A: It is possible to sip when you feel nauseous and gaggy, but also it turns things around quickly. We also like using silver but have found ozone to be a little more effective, a little faster, and definitely cheaper to produce than silver.

5L Airsep Concentrator

Anyway, after a particularly nasty, long, relentless round of COVID, I purchased the Promolife package (not to cure COVID but to help restore my overall health and well-being, I am aware this is not a “cure” for any virus). Once I started committing to regular use of ozone therapy, HBOT, the heavenly heat sauna, and some heavy-duty quality supplements (call Dr. Rick), I finally started to turn things around.

From there, it really took a solid 2 years of focus to get me to where I am now, which is actually in better shape than I was before I got the virus. If there is a silver lining for us (for me) from COVID, it is this. I refocused much needed time and energy on my health.

Promolife
Disclaimer: My kids will only resort to ozone when they feel cruddy but won’t use anything anymore on a regular basis so there is that, but when they are sick, ozone water is always something I can get them to at least take 5-10 MLS of.

Here is what my setup looks like:

Ozone generator set up Promolife Pediatric Airflow Various glass beakers for ozone Breathing through Ozone #BOO olive oil insufflation

This article from the Center for Natural and Integrative Medicine has some great reasons for using ozone. They list the 10 “surprising” benefits of ozone therapy. Obviously at home, we are limited to insufflation techniques; however, we still got great healing happening from doing regular treatments at home.

1. Immune Boost
Ozone therapy stimulates the immune system to improve the body’s natural defense against sickness and disease. This makes ozone therapy an effective treatment for conditions that cause an underactive immune system such as AIDS, cancer, and chronic infections.

2. Immune Regulation
In addition to providing immune stimulation for people with an underactive immune system, ozone therapy also works as an immune regulator. For people with autoimmune diseases, ozone therapy can help to slow down the overactive immune system for symptom relief.

3. Improved Oxygen Delivery
Ozone therapy boosts oxygen delivery to cells, tissues, and organs, which improves the body’s ability to function optimally.

4. Detoxification
Ozone therapy supports the body’s ability to flush out toxins, whether they be from the environment or from lifestyle habits. The powerful detoxification afforded by ozone therapy can provide a significant boost to your overall wellness.

5. Greater Blood Circulation
Ozone therapy has also been proven to boost blood circulation; better circulation ensures that nutrients are more effectively delivered to the body’s cells, tissues, and organs that need them.

6. Antioxidant Protection
Ozone therapy is the most efficacious treatment for increasing antioxidant protection; antioxidants are crucial for the body’s natural defense. Most individuals with chronic disease have insufficient antioxidant defenses.

7. Bacterial Infection Treatment
Due to its antibacterial properties, ozone therapy can treat bacterial infections and lower the risk of infection if you have an open wound.

8. Diabetes Care
By lowering oxidative stress in the body and preventing oxygen starvation in the cells, ozone therapy is a valuable treatment in diabetes management.

9. Chronic Pain Relief
Ozone therapy is a natural treatment option for individuals experiencing chronic pain. The treatment can help relieve pain by reducing inflammation in the body and supporting the healing process of damaged tissues.

10. Mitochondrial Stimulation
Did you know that decreased mitochondrial energy production is the main underlying cause of all degenerative diseases? It’s true, and ozone therapy can help by acting as a mitochondrial stimulant.”

Additionally, taking care of our environment with non toxic cleaning products, switching our personal care products and drinking clean water (Read more on Flouride and why it’s a good idea to keep it at a minimum) and try Promolife’s solution to fouride.

Finally Ozone Saunas: Promolife is able to offer 2 ozone sauna options and we love having choices. I haven’t pulled the trigger yet on the ozone sauna I am still using my far infrared sauna daily, but I would eventually love to get one of the far infrared sauna domes when possible.

Relax Infrared Ozone Sauna  or This would be my ultimate: Ozone Ready Far Infrared Sauna Dome

Please note that some of the links on this page are affiliate links, and I will earn a small commission (and be eternally grateful) if you purchase through my links. I only promote and recommend products I use personally and companies that I find helpful and trustworthy. Please let me know if you have any questions about any of my links or the products themselves, I am always happy to share what worked for us (or didn’t).

Promolife

ERP Rogers Behavioral Health

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Exposure Response Therapy (ERP) Rogers Behavioral Health

In the summer of 2018, we set off to Florida for 8 weeks of partial hospital programming at Rogers Behavioral Health.

Things we did like: We were a team effort, not just the child, but both parent and child undertook the program. I had a private space to work while B was in treatment. Occasionally I was pulled into his treatment, but they also ran classes for parents while our kids were engaged in the partial hospital program. At the end of the day, there was a debrief for all of us. The Ronald McDonald House was amazingly kind and helpful. You cannot beat Florida (St. Petersberg) for being in treatment over the summer. We watched a lot of kids recover using ERP (exposure response therapy) while we were there. However, those kids were petrified of tangible things, things the therapists could touch, feel and control, which on so many levels made treatment easier and more successful. Pure OCD is not as easy.

Things we were disappointed about: They didn’t recognize pure OCD or PANS/PANDAS. They didn’t believe me when I said the medication they were insistent on trying had been tried before and made everything worse, spoiler: it did. Most disappointing, in the end, we left without any real movement in symptoms or complexity.

“Exposure and response prevention (ERP) is a form of cognitive behavioral therapy (CBT) used to treat a variety of conditions, including anxiety, phobias, and eating disorders. It is considered the gold-standard treatment for obsessive-compulsive disorder (OCD).”

In fact, 5 years later, and I have finally paid off the copayment, he is still very upset at me for making him stay in a program that was “useless and made him feel much worse about himself”. All fair comments. We left that program with a  diagnosis of “pathological self-hatred”! Which now I know better, is a HUGE indicator for Pure OCD and I feel the therapists should have been very aware of the connection and subtle presentation.  The reassurance compulsion was what triggered the “self-hatred” piece of the diagnosis in the first place.  How to comprehend that cycle of hatred and OCD and PURE OCD?

“How do you Recover from OCD and an Addiction to Self-Hatred by 

Mental illness is not easy to comprehend for the ill or the healthy. The overwhelming majority of medical professionals believe that many disorders are incurable with our current tools. Many say the best a person can hope for is relief from the symptoms.”

Breaking this cycle is proving monumentally hard.

 

Leucovorin

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Leucovorin – Folic Acid to the Rescue in Autism

Leucovorin is very expensive, a pharmaceutical form of folic acid. Typically this drug is RX’d to those who show a reaction on FRAT testing.

What is FRAT Testing: “Fratnow’s FRAT® measures the presence of antibodies that interact (either block or bind) with the activity of the Folate Receptor A (FRA). FRA is responsible for the transport of folate – and its active component 5-MTHF which helps metabolize folate – into certain tissues, most notably the brain, placenta, and ovary. These antibodies were detected in the blood of numerous individuals with disorders ranging from Cerebral Folate Deficiency, Autism Spectrum Disorders, sub-fertility in women, and pregnant women carrying fetuses with neural tube defects (NTD). Additionally, antibodies have been found in the parents of some children with ASD.”

After showing positive for Folate Receptor Antibodies, we started on leucovorin 10 mg and eventually titrated up to 50 mg twice a day over the course of 2 years. Unfortunately once again this proved to not yield any remarkable or recognizable results. When B finally stopped taking it one day and never resumed, nothing changed. No changes were observed in any area of cognition or behavior.

Read why Leucovorin is used in Autism Spectrum Disorders: The Soluble Folate Receptor in Autism Spectrum Disorder: Relation to Autism Severity and Leucovorin Treatment: 

Our daughter was rx’d Deplin after being given a positive FRAT result – we decline to give this medication after reading through the ingredients and wondering why it needed to be bright orange. We have continued on straightforward folic acid for her but only at 10 mg once per day.

HBOT

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We bought a HBOT

Yes, we are now the proud owners of a Newtowne 27″ Hyperbaric Chamber with a 10-liter Air Sep Oxygen concentrator.

We decided to remark on a series of hyperbaric chamber therapies again. I still think this is a great way to aid recovery; however, due to his demeanor and frustration tolerance as he has gotten older, it became impossible to convince him to dive. Instead, I committed to a two-year dive schedule to see if I could affect any of the symptoms I regularly struggled with due to a diagnosis of fibromyalgia. I completed my final dive of that period in July 2022 and have felt some amazing, lasting effects from the chamber. No foot pain, no migraines, and able to finally sleep on my left side without vertigo, decreased back pain and increased energy. I continue to dive on a regular basis and have chosen it as an integral part of my recovery including continuing during three rounds of the latest viral infection.

IVIG

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IVIG the miracle cure?

At everyone’s urging and our doctor’s blessing, we undertook 3 rounds of IVIG.

Three very difficult infusions over the course of several months. One trip to the hospital with a migraine so bad the vomiting wouldn’t stop and a son crying in pain and wondering why he had to continue to endure these awful, awful events in his life.

The first infusion was exciting, anticipation was at its highest, and this was what we hoped for when we battled our insurance to cover the treatments for our son.  The box of supplies arrived on the doorstep at the house, the product was placed safely in the fridge for preservation and safety. Enough for 2g/kg for my son. We loaded him on Gatorade and got ready to see a significant change from the two-day infusion. Low and slow was sure to win the race.

The day arrived, the nurse came early, and the stick was as troubling but not impossible. The infusion got started. We loaded up on Advil and Benedryl and watched the drip, drip, drip. Adding the fluid bolus, every 6 hours we followed the prevention protocol. Later adding a steroid taper to ensure no headache or migraine occurred. We had heard horror stories. We tried to be proactive.

The infusion was done. We made it through. It wasn’t easy, and it wasn’t smooth but he survived. Unfortunately, no positive results seemed to be initially apparent but we knew it could take time, so we packed away the trash, and scheduled the next infusion.

Still no real changes but one month later, infusion 2. Same anticipation, the same routine, loading fluids ahead of time and being ready, but the nurse was not able to stick him. That nurse left. We decided to stop for the day and give him a break. The next day another nurse came. Success!! but a little more than halfway through, that infusion became too much, he became overwhelmed and we decided it was safer to stop. We calculated he had been given 1.5g/kg and so were not overly concerned about the low dose side effects we were all too familiar with. That night my husband raced to the ER with a very sick, very lethargic child. The ER took into account his situation and administered another fluid bolus with additional magnesium. That seemed to do the trick. My husband loudly and clearly declined the offer of a spinal tap. Instinctively knowing the ER was not the place to get that done.

Infusion 3, and while it went ahead and we did get most of the fluid and IG product in him, it became apparent that this was not going to continue. We were not seeing results and the steroid taper on the last attempt left him with significant body pains and just a feeling of irritation, anger, and frustration. We stopped and decided that, while it was worth the attempt, the answer wasn’t to be found in IVIG.

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