Day Ten

Week One - the week of testing and prepping week - is done and now we're getting into the routine of full treatment or at least trying to establish a routine ... and here we are almost done Week Two (writing this while the kids are in hyperbarics on Friday morning), time is flying. 

The HBOT Room.  They cannot take anything in the chamber and since they have to be alert to equalize their ears they also cannot really sleep during this time (maybe later when their ears adjust), so this is their downtime watching TV/Movies

Last Thursday we had some time off from the clinic.  The testing was completed and so we only had to come in for HBOT in the morning and again in the afternoon.  Because Rebecca was having such trouble with her ears they had her go for some Jade Lymphatic Drainage Therapy before we left for the afternoon.  This therapy helps to open up the lymph nodes since they do not have their own pumps and is used to reduce inflammation and pain, among many other benefits

Killing the bacteria on the skin so that it isn't driven into the body when doing the actual massaging

Massaging the lymphs

I may not understand all these natural therapies, but I will say we had one smiling Rebecca when she got off the table.   The pain was gone ... and it has not returned.  She was amazed and so happy.

On Friday we also had a bit of a shorter day for detoxing treatments but both kids had dietitian appointments to work out appropriate diets that will help keep inflammation down.  They were able to go for their second “dive” mid afternoon so that we were able to get home bit earlier this time, which was a nice change from arriving home at 6:30-7 and still having to have supper.

There have been some changes to our original plans. Over the weekend they reviewed some of the testing that they had done and we had provided and have decided to put Matthew on a Mold Treatment Protocol instead of the full out Lyme Program.  We see similarities between Matthew and Rebecca, but we have no testing that would tell us Matthew has Lyme Disease and his clinical symptoms are not strong enough for us to say it is Lyme Disease and so they rather not over treat him.  On the other hand, testing definitely shows that he is having trouble with mold toxins.  The Mold Treatment Protocol is less intense then the Lyme Program and he will only need to go in the chamber once a day for an hour.  After that he will do some detoxing by doing PEMF, Brain Entrainment and Biofeedback and rotating between infrared sauna and hyperthermia treatment.  He will also have some of the other available treatments but I’m not sure exactly what he’s doing and what he gets to skip.  This means his day will be done around 1:30, compared to Rebecca who also has Ozone/Coffee Therapy, and various other changing therapies as well as a second time in the chamber, and she's done around 5. 

Another major change comes with Marietta who was suppose to be our built in maid for the summer, trying to maintain the house and make meals for us, run errands when she felt well, do laundry etc. However upon learning that Marietta has post concussion syndrome they were quite insistent that we bring her in and they would work it out so that she could do some treatment as well as they also have a concussion program.  One of the clinicians here does BioFeedback/Neurofeedback/Brain Entrainment and suffered for five year with post concussion syndrome, so she is familiar with what Marietta is dealing with.  Previously we have read about HBOT and concussions and considered doing HBOT but there wasn't a huge amount of information on it and the cost of it made us decide to wait on that idea until after we had seen how she did over the summer and exhausted any other possible ideas.  We knew we would be at the clinic every day and that it made sense to give it a try at this time, but honestly, these things cost money and we couldn’t fathom how to put three kids through treatment.  The Clinic would like to see all of our kids feeling better and so they have very graciously and generously work out an amazing price to have all three kids treated that it would really not make sense to refuse.

So, Marietta had her first day at the Clinic on Friday where they did some scans and assessments and then began treatment on Monday.  Marietta’s treatment involves going in the chamber each morning for one hour. Due to the differences in “dosage” for Rebecca’s lyme treatment versus Marietta’s brain treatment the girls could not go together as Rebecca dives deeper and longer each day.  This means they have put Marietta and Matthew together in a chamber and they are now working out the joys of picking something off Netflix each day that is appropriate for both ages 😲  Marietta also does PEMF, brain training, biofeedback and will be starting sauna soon.

Marietta's first chamber day

All comfy and ready to go

So since Monday we have all been arriving at the Clinic just before 9am and the kids all go in the chamber at that time.  From there they go to separate therapy rooms, rotating their way through therapies until lunch time.  After lunch time Matthew still has to do his heat therapy and once he’s done that we are usually free to go for about 2-3 hours. I return to pick up Rebecca at around 5 pm.  The schedule does adjust at times, which leaves with less time between for doing things or returning “home”.  Home is also 30 minutes away, so I don’t really want to be driving back and forth every day so we will have to find ways to kill time while we wait for Rebecca.

On to the fun part … pictures of some of what's been happening at the Clinic.

Marietta having a biofeedback scan done

On Monday all three kids went for Jade Electrotherapy.  They all like this therapy

They worked mostly on Matthew's chest/upper body area.

The girls had work done on their faces

Monday was a double dose of treatment as they also had Aromatouch and Reiki done ... usually this is done on Tuesday.  Aromatouch involves the use of essential oils and light touching/massaging of them into the body.  You can google Reiki to learn more about it ... as I said, I don't totally get all these alternative treatments but here's an explanation I found:  "Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by "laying on hands" and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive. If one's "life force energy" is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy". We're not quite sure about that one but will do what the program gives us. 

Matthew loved this treatment ... as did his sisters.

Every day each of the kids go for about half an hour of brain training.  This is a pretty simple therapy as they just have to sit there with their eyes closed and let the machine do its work.  They wear glasses and headphones and sometimes ear clips, depending on the training. The glasses will flash lights at different frequencies or colours. The earphones produce sounds at different pulses and the ear clips are vibrating at different frequencies as well.   This training is supposed to stimulate the brain into entering a specific state (beta, alpha, theta, delta) by changing the brain waves.

Matthew doing brain entrainment.  He find half an hour to be a very long time when you are just sitting there doing nothing and can't move around or talk.

Every other day Rebecca and Matthew switch between infrared sauna and hyperthermia.  Matthew prefers the sauna and Rebecca prefers hyperthermia.  The goal in both of these is to sweat and sweat lots, pushing toxins out of the body through the skin.  In hyperthermia they heat your body temperature from the core by inducing a fever.  This is done by putting you in an “oven” and monitoring your temperature until it rises high enough, after which the "oven" is turned off and they hold you at the temperature for a period of time so you keep sweating ... and sweat they do, they are soaking when they are done.  If you google Lyme and hyperthermia you will read about how this type of therapy is become quite an effective Lyme treatment, especially in Germany, one of the few countries where Lyme Disease is actually recognized by the government.

Rebecca in the "oven"

Matthew's first time in the "oven", he was not liking it very much

The days are tiring on the body, especially for Rebecca.  She was beyond exhausted by the end of last week and is still feeling that way now.  She is also having a lot of pain in her back, making it hard for her to sit, walk, climb stairs or bend very much.  It is expected that she will feel worse before she begins to feel better, this is part of herxing and detoxing.  It's not nice, but we hope it is a good sign and that it means we are making progress. By the end of Week 3 and into Week 4 she should begin to show signs of feeling a bit better.

Breakfast time and already exhausted

Arriving home and crawling into bed, too exhausted to wait for supper

Matthew doesn't get quite as tired and is able bounce back after a rest period, but he didn't started off fatigued like Rebecca either.  He does have random times where he is more tired or just feels yucky but can't clearly explain what it means to feel yucky.  He does still fall asleep during some treatments and very quickly at night, so while he tries to tell me at bedtime that he's not that tired he still definitely is needing his rest.  

Marietta is especially struggling with these earlier mornings.  This has been a major struggle ever since her concussion and she has trouble waking before 8:30am, so getting up and out the door before 8:30 every day has it's challenges, but she gets a nap during PEMF treatment each morning and hopefully she will slowly adjust. They are suspecting the nausea she feels when waking up early is from her liver still detoxing. This is normally done in everyone from 11PM-3AM... but when you add mold build up and brain injury (which research shows affects the gut as well) this process could take a lot longer, and waking up earlier when it's not complete would explain the yucky feeling. Hopefully with help detoxing here this slowly stops. 

There was much disappointment at the end of last week expressed by Matthew when he found out that he will need 8 weeks of treatment.  We had originally been told it could be anywhere from 4-8 weeks, but now it is confirmed that we will all be here for the full 8 weeks ... and since Marietta started a week later then the other two it could possibly be 9 weeks if we do her full treatment time.  Since things change from one day to the next and one week to the next, we will just keep rolling with things as they are and figure out all those details when the time arrives.  

"Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28