I think it is easy to go to Infusio and assume everything will be better after this. You finally feel like you have a treatment option that will work and get so excited about it that you don’t prepare yourselves for the 12 month healing journey to come after that. So I’m afraid I may have to burst your bubble on the near term – but I assure you, for the long term, it is worth that excitement!
HEALING IS HARD! (For some people anyway). It was harder than having the Lyme disease itself for me. You feel like you should be getting better as you have had treatment but for 100-120 long days you may experience an intense roller coaster with old symptoms rearing their ugly heads. In this period, neurotransmitters are thrown off, hormones can go crazy, histamine issues may arise, neurological symptoms can increase and all the old symptoms you thought you had got rid off may come back. For me, the old symptoms returning only lasted 3-4 days at a time and then I would get some relief. I have heard that some people feel worse through the whole 100 day period and even up to the 12 month mark and healing can continue for up to 2 years or more. Or you could be one of those people who feels better straight away and keeps getting better. But I have written this, in case you are not (which I wasn’t!)
It is easy enough to think you can handle it, but when you are in it and the fear creeps in that you are getting worse, that this is not healing and you are just getting sicker, that you have made a terrible mistake and your body is giving up, it can be hard to stay positive and focused.
So here is my advice:
- Get a support plan in place for day to day living – make sure if you have a real horror of a day, you have someone to help you eat and to get you through it.
- Get mental support in place – I would recommend setting up a therapist to see weekly or every 2 weeks. Someone who is experienced in chronic disease. Explain the treatment to them and explain the timeline (some people do not see any improvements until after 6-9 months) and that you may need some encouragement staying positive and working through the emotional issues that come with healing. A lot of baggage can arise from this process. You may deal with feelings of shame, loss and guilt for being sick for so long and also then have to prepare yourself mentally for getting back into real life one day soon and what that will be like. There is also a lot of hope and disappointment in the journey that you should be prepared for – you can get weeks of feeling well and then get slammed again for 2 months. That is just how it goes unfortunately.
- Explain to family and friends that this could be a rough journey for a while and that it is normal and that you just need their support. There is nothing worse when people ask you why you are not better yet when you feel fearful yourself and just want someone to tell you it is going to be fine.
- Make friends! Join the Support After Stems Group and Healing Journey After Stems group. The people in here may become your life lines on days where you think you can’t do it anymore – a lot of people are further out so can say it gets better. It is also so good to be able to talk to people who get (really get) what you are going through.
- Get a local doctor on board with your treatment before you go. You may have things pop up which you need help with that Infusio cannot help with from afar. For example, if you get an infection and you need antibiotics or if you get a virus and need anti virals etc. You will need a doctor who can give you prescriptions who is on board.
- Get a functional lyme literate doctor for support after your 100 day follow up. I recommend anyone who is Klinghardt trained or Bob Miller as he understands genetics. You may have worked for years on the foundational issues with no success but sometimes after stem cells, your body just starts responding to treatment that has never worked before – so address vitamin deficiencies, methylation, vital organ support, fulvic minerals for viruses, gut health, detox pathways – start early! But be careful as our bodies can be very sensitive post stems so you may not tolerate supplements or medications like you used to be able to.
- Get on a histamine scavenger and DAO enzyme as soon as you get stem cells as they can trigger histamine issues as the nerves repair.
- Get ready for insomnia in the first 100 days. Get some coping methods in place for this – you may need a sleeping pill. This is something a local GP should help with.
- Meditation – when your whole brain feels like it is being assaulted and depression takes over, it can be soothing to meditate and visualise those stems working. This is a good stem cell mediation: http://www.healthjourneys.com/Store/Products/Bone-Marrow-and-Stem-Cell-Transplantation-Health-Journeys/95
- If things get worse DO NOT PANIC. Try not to doubt the treatment or doubt that you are healing – because often this is healing. It’s important to remember that if you are dealing with an increase in neurological symptoms, increased inflammation, increase in pain, fatigue, etc, that that IS the stem cells working. The body uses inflammation, cytokines, increased histamine, even mast cell release, as a way to heal. Neurotransmitters, hormones and other things may temporarily increase, decrease, or fluctuate as the body recalibrates and uses these tools in necessary ways. Emotions may be increased as well, crying, instability may happen. But please tell your stem cell doctor and go get checked to ease your mind if you think it doesn’t feel right. This is why it is useful to have a functional lyme doctor in place.
- Expect that you may not be able to do things for the first 6-12 months at least – all plans must be tentative as the roller coaster can hit people at all times – up to 24 months sometimes.
- Netflix – everyone’s friend. I think the worst thing to do when you are at home all day is to just be there with your thoughts and worry. A good Netflix series will help distract you.
- Try to get out of the house as much as possible for short walks to avoid cabin fever.
- Try and stick to a healthy diet – low histamine, low FODMAPs, paleo, vegan etc. Whatever works for you. But don’t beat yourself up for having a treat day but diet and gut health is vital for healing.
- If possible, try and do light exercise. The stems like activity. But if it takes you days to recover, then don’t do it.
- Avoid negative stress – take the pressure off in any way you can!
- DO NOT TAKE THE WHITE POWDER (Infusio people). I learned this the hard way and found out many of its components are not suitable for a lot of people’s genetics.
- If you take supplements be VERY careful. Our bodies get super sensitive post stem cells and you can end up reacting to things you never reacted to before. Add in supplements one by one and titrate up.
- After the 100 days, get blood tests done. Test everything – Dutch Complete for sex hormones and adrenals, thyroid (T3, T4, TSH, RT3), red and white blood cells and other immune markers, inflammation markers, a full vitamin panel, lipid panel, a GI comprehensive stool test, SIBO breath, mold and metals test etc. You need as much information as possible at your follow up appointment to go through with Infusio so you can work out what you need to focus on after the 100 days. If you can, get a functional lyme practitioner to look at an Organic Acid Test.
- After the 100 days you could focus on retraining the brain. These two programs are good: https://retrainingthebrain.com/ and https://www.guptaprogramme.com/
- For some people, after the 100 days, less is still more. However, some people may benefit from a supportive IV plan – listen to your body. If it makes you feel worse, don’t do it.
- Light detox is good – Epsom baths, sauna mat, dry skin brushing, rebounding, accupuncture, some herbal detox supplements, binders – do what you can tolerate. Don’t overdo it.
- No killing after stems (if possible). Don’t get back on an antibiotic or herbal protocol for lyme as this defeats the object of the treatment. Sometimes anti virals and herbs may be needed but this should be on a case by case basis. I am trying to avoid taking any antibiotics and steroids for anything (however, if you have an acute infection and need antibiotics it is fine to take them).
- Consider another round of Thymus injections after 4 months.
- If you are in a real slump after 6 months, consider 10 days of IV NAD therapy – this was a turning point for energy for me.
- Don’t get amalgams and other mouth work done until you are feeling much stronger – I plan on waiting until 9 months at least. After this, look at your metal levels and think about chelation.