My 4-6 month plan: 

Infusio stresses that the only things we should be doing after the 100 days are supportive things – so if it makes you feel worse, don’t do it.  I also want to stress that the below was a personal plan that worked for me with some trial and error.  Infusio generally takes an approach that less is more and just let the body be, but I wanted to get a plan going to keep myself operating.  The below is not a bible of what to do to get well as some people do better doing very little and riding it out up to the 1 year mark with the less is more approach.  But I thought I would share what I am doing in case anyone is interested.

Hormones – This was the first thing to address.  I needed to get my hormones balanced. My acne had become very extreme in the 100 days and my thyroid had worsened (for some people it improves and they have to lower their thyroid meds but for me it was the opposite).  I increased my thyroid medication (Nature Throid) to 4 grains to get my levels in a good range.  I also went on the contraceptive pill, Belara, which contains a type of progesterone which blocks androgens.  I had very high androgens – a major cause of acne.  I did an oestrogen dominance saliva test which came out positive for oestrogen dominance.

Weight gain – this can happen for some people post stem cells.  Infusio is not sure why – they think it could be to do with the body absorbing food better or a hormonal reason. I have heard from others who have sought advice from different doctors that another reason for weight gain is thought to be due to an issue with leptin.  I am trying the supplement EndoTrim by Designs for Health to control leptin.  Another potential reason is water weight, so I am taking Organic Dandelion Root supplement to help my lymphatic system and to support my liver.

Stomach issues – I am still struggling majorly with SIBO. Infusio believes that SIBO is a result of sluggish digestion from damage to the vagus nerve and usually people don’t see improvements until after 6-9 months post stems (the time it takes for neurological issues to start resolving).  Their advice is always no killing after stems.  So no anti microbial herbals or anything.  Therefore, I am just focusing on support.  I did a 20 day digestive tract cleanse with Zeobent Powder.  I am now supporting my digestion with Thorne Betaine HCL & Pepsin and Vital digestive enzymes – Pancreatin & Ox Bile Extract.  I also take Organic Psyllium Husk to keep things moving. I had some slight relief from this.  In terms of probiotics, I am cautious as I know these can feed SIBO.   I will think about trying CoreBiotic – a SIBO friendly probiotic and I am looking into Megaspore probiotic which can be helpful for SIBO.  I also should do a low FODMAPs diet but I am reluctant to cut out more foods…  I am still trying to find out what will be helpful for these symptoms. 

Immune modulation – I tried to add in colostrum by Immune Tree as well which is a helpful immune modulator and helps probiotics do their job – however, this stirred too much up in my gut, so I may add this in again at a later date.  I also am taking a Reishi Mushroom supplement to support my immune system. I did more Thymus as well –  Infusio recommends to do this every 1-2 years as a supportive therapy.

Nerve repair – I am taking the supplement Keltican to help speed up nerve repair.  Please be aware that some people cannot tolerate the b12 and folate in this supplement so it may be better to take uridine monophosphate as a supplement on its own .  There are a few brands including Double Wood, Focus Supplements and Jarrow (about 250-300mg per day dosage vs Keltican which is 100mg per day for 2 capsules).

Vitamins and minerals support –

I am getting a weekly Myers cocktail IV and one other IV each week including selenium (for thyroid, immune system and digestion support), glutathione (the master antioxidant) and CoQ10 (for mitochondria support).  I am also taking B12 orally and doing B12 injections to support my immune system.

I am taking fulvic minerals which are helpful for many different things. Infusio warned that this can be an issue for some as it is a detoxer, but I personally had no issues with it and I think it helped me.   You can read about what they do here: https://www.optimallyorganic.com/fulvic-acid-x200.

Adrenals – I took one bottle of Chi Energy by Chi Enterprises to support my adrenals.  I would also consider to take Gaia Herbs – Adrenal Support in the future to support adrenals.  Bijan said only one bottle of Chi Energy was necessary for now.

Tinnitus – I tried the supplement Tebonin for my tinnitus but this did not work. I now believe my tinnitus is due to nerve damage and I will have to wait the 6-9 months for nerve repair to happen.

Detox – Infusio only recommends very light detox – e.g. if it makes you feel worse don’t do it.   I personally could tolerate using an infra red sauna mat every other day so I have started that.  I also have epsom salt baths with lavender essential oils after the mat to draw everything out of my pores.

Accupuncture – I do this once a week and I ask them to work on my lymphatic system, energy support and immune system.  They do a style called Chi. I go into these deep states of relaxation where I feel like I am floating.  I am not sure how much this contributes to getting well but it was a way to almost meditate and deeply relax every week for an hour.

Yoga and exercise – I am not tolerating exercise well.  Doing cardio makes me feel hungover the next day.  I started to do some yoga instead – Yoga with Adrienne on Youtube is great.  Especially the one for back pain.  But generally, this area is where I struggle.  I used to love the gym and it’s really difficult not being able to do that, but my body just doesn’t like it when I exercise. I can handle some very light yoga without being wiped out the next day, but that’s about it.

23 and Me – I got my DNA analysed by a practitioner in London who uses Opus 23 Genetics.  It was pretty useful as it showed a handful of issues that can occur from my genes – some of which I already knew I had.  For example, it said that I would have difficulty metabolising oestrogen and androgens. It also said that I metabolise B vitamins too fast, so may need to take Biomedica Bioactivated B in future (methylated B forms). Other things were that I expel D vitamins too quickly, so should monitor levels and also that I tend to have excess iron (this had also come up in blood tests before), so another thing to monitor as this can be a cause of Alzheimers, so if it is too high, I should consider a venesection.  Finally, it said that I should support my liver, rotating with with milk thistle and Schisandra and make sure I am getting enough vitamin A to keep my eyes healthy.

Months 4-5

After beginning this plan I have began to feel very small improvements and am gaining a sense that I am healing.  Everything has stabilised a bit.  I no longer am afraid of what I will wake up to symptom wise.  I am also sleeping much better – 8-10 hours a night of deep sleep, no longer waking up in the night downing water feeling like I am dying and only a few nights of insomnia.  My energy improves a tiny amount for a few days here and there. Generally I am on a level where I have been able to leave the house more regularly and have less major crashes. This could also be because I am not wiping myself out by trying to go into work anymore.  I still get very tired and feel hungover and flu like if I exert myself.  I am still feeling fragile – I have some major reactions to some foods. Overall, beginning month 4 I was functioning at around 30% and crept up to 40% in month 5 (50% on a rare day where my energy was better).

Month 5 is hard neurologically – very bad tinnitus, my vision is off so it is hard to focus and I keep having to rub my eyes, I have major brain fog and no concentration and complete intolerance to any form of exertion or exercise. I get a sore throat whenever I exert myself so really have to take it easy. I think it is to do with the vagus nerve. If I could just get a bit more energy things would be so much easier. I really want to exercise again but I just can’t as my body pushes back so hard.

At the end of month 5 I have woken up in the night with swollen glands and an itchy rash on my chest that looks like heat rash and racing anxiety.  I have no idea what this could be but have heard of quite a few people getting rashes. I am taking antihistamines and Zantac for symptom relief.

I have also been experiencing histamine attacks from drinking even a tiny amount of alcohol and from chocolate – my heart has raced very fast and thumped hard so I have not been able to sleep. One time it lasted for 3 days after. This has also caused me horrible stomach pain too. I had an ECG to check it wasn’t a problem with my heart – it wasn’t.  Phil’s explanation on this histamine reaction is that it is connected to neurological rejuvenation – the mast cells (which release histamine) sit in between the nerves to pass information  between the nerves, so play a vital role in neurological repair.  Phil suggests to ride this out or if it gets very uncomfortable, take a natural histamine scavenger.

Remaining symptoms: fatigue, achey flu/hungover feeling, brain fog, sore throats, post exertional malaise, tinnitus, vision problems, digestion and stomach issues, food sensitivities, very minor joint pain, acne, weight gain, motion sickness, head pressure comes on bad days, alcohol intolerance.

Improvements: bladder pain gone, hand tremors gone, joint pain has lessened, nausea lessened, itchy skin gone, now a more healthy weight (even though I am gaining),  mood is much improved (feeling much less depressed and panicky), swollen glands gone, mouth ulcers significantly reduced, back of the neck headaches and stiff necks are significantly reduced, no more hot sweats in the night, clumsiness improved, do not feel cold anymore, improvements in thirst and dry mouth.