Timeline – The advice from Infusio is that recovery is as 12 month process. Neurological issues are not expected to start to improve until after 6-9 months. It is common to see very few improvements until 6 months as a lot of people’s symptoms are due to neurological issues. Many people have said they are still feeling improvements happening 2 years and even 3 years out.
From September 2016 to March 2017, when I went to Infusio, I was operating between 10-30%, depending on the day. I had definitely got myself a bit more stable before going by treating the gut infections, taking herbals and maintaining a strict diet since September.
The first 100 days:
I was told that this could be a “roller coaster” where you could get good days and bad days. For me, personally, it was really pure hell. It was a very intense time and things got worse.
The advice from Infusio was to do as little as possible for at least 100 days (I stuck to this for 120 to be safe) in terms of medication, supplements and supportive therapies – just to let the body be while the stem cells replicate. The stems replicate roughly 10x every 10 days. In terms of diet, I stuck to paleo, trying to eat organic as much as possible and with minimal caffeine and sugar mainly in the form of fruit. However, Infusio recommends low histamine and low fodmaps if people have issues with those. They are also now recommending vegan to some people but this is not something I could have done due to not being able to tolerate grains because of my SIBO. I was told it was ok to have 1 drink on a special occasion in the 100 days, but I tried to avoid this. Alka Seltza Gold and Modified Citrus Pectin were my friends in the 100 days – they calmed symptoms on the very severe days.
When I came home from Infusio I felt very tired and out of reality. This slipped into feeling extremely chemically depressed and anxious in the first 2-3 weeks. I couldn’t bare to see anyone which is so unlike me as I am usually very social. It was in a different way than I had ever experienced before though as it was something so chemical and out of my control. I was also extremely fatigued and couldn’t do much.
I don’t think it will be possible to explain in detail all the thoughts and emotions I went through in the 100 day period but it was very profound and I did not feel at all like myself at all. All emotions were heightened and I felt disconnected to everyone and disconnected to reality.
After a couple of weeks I had extreme insomnia – nothing would send me to sleep. I had also never experienced it this bad before. I tried melatonin, 5htp, neurexan, trazadone and eventually had to resort to diazepam as nothing else would work. Some nights I would be up until 5am. I just watched Netflix all night. The insomnia lasted this severely until week 10-11 and then started to lessen.
Symptom wise, things were changing all the time – I was having the flare ups in different symptoms which would last a couple of days, but generally I felt 2 major improvements in joint pain and digestion (however the digestive problems came back towards the end of my 100 days). I developed new food intolerances to eggs and peppers.
In weeks 5 and 6 I had all my neurological symptoms flare up with intense head pressure, dizziness, nausea and increased tinnitus and vision problems. A couple of days I really could not move from my bed it was so bad. It was also around this time I tried to go back to work part time for 2 days a week so that was very hard and I had to really try and focus on getting through the day.
Around this time I also started getting a very itchy scalp and red, dry itchy patches around my ears- I believe this may have been candida. I treated this by spraying apple cider vinegar onto my scalp (gross) and also used colloidal silver as a spray (which didn’t work as well). It went away after a few weeks.
After week 9 I started getting big energy bursts. It was like hyperactive energy where I felt like I didn’t know what to do with myself and felt 60% better. I had some fun in these weeks and saw friends and could have the stamina to do a lot. I could work 4 days a week around this time.
At week 12 I came down with a severe flu (or what felt like flu). I was severely dizzy, vomited, felt weak and nauseous and couldn’t get out of bed for 2 weeks. It was made worse by the fact that after this, I abruptly stopped my 5HTP supplement so was having serotonin withdrawals. I really thought I was dying at this point – I lost the ability to understand what people were saying to me, I couldn’t read, I couldn’t understand what people were saying on TV and my movements felt slow and robotic like my brain wasn’t signalling properly. It felt like I had brain damage. This is the worst I have ever felt in my life and it was very scary. After I got over this patch (it took 3 weeks to get over the worst of it), I had lost all the stamina I had gained. I was extremely fatigued again and had no energy to do anything. My digestion also had worsened and I was having extreme bloating and nausea. The roller coaster of symptoms had lessened but I had entered into such a deep fog of fatigue and nausea that I had to stop going into work and work from home again.
Post 100 days:
I was disheartened after my 100 days. I was flipping from functioning at 10% to 60% in a week during the 100 days but had plateaued at the end at around 30%. I thought there was no way I was going to get better as I was feeling back to square 1 terrible, but I then had to remind myself that this really is a 12 month timeline minimum. I went back for my 100 day follow up appointment in Frankfurt at Infusio (at around day 115) and with some recommendations from Infusio, I started on a supportive plan for my body in months 4-5.