I am a lymie who managed to recover from MCAD, so sharing what I did in case it can help anyone here.
It's my first post, so I will just introduce myself quickly, but you can skip it and go straight to the topic below if you want. I know I'm also bad at writing so I apologize if it is difficult to understand. TLDR if you have brain fog:
eat clean, thymus extract, b-complex, fredd's methylation procedure, vitamin A,D,K2 + calcium, kidney extract
I have had lyme for around 10 years now, and am mostly (90%?) recovered. Story is quite typical - got bitten on a holiday in scotland, undiagnosed for 2 years, eventually given 2 weeks of doxy and then pronounced as cured. I then went through almost every treatment procedure I could find by myself, starting with high dose abx (doxy, azithromyzin + flagyl), then onto buhner herbs when I relapsed after that.
I got a lot of help from reading healingwell while I was in a much worse state than now, so I wanted to come and share some of the things that helped me that might be less widely known here.
I started getting really bad food intolerances about
a year and a half ago, to just about
everything. Most food would cause mouth tingling and tongue / throat inflammation. There were a few weeks where all I could eat was white rice and the odd apple. I was also reacting to basically everything around me - bedsheets, towels, most clothes etc caused rashes.
As of now, I am totally able to eat anything I want, without a reaction. This includes frequent pizzas and junk convenience store food that caused the most reactions previously.
Never got an official diagnosis so I can't say if it was MCAD for sure, but I will share my experiences anyway.TREATMENT
First, I tried the standard MCAD recommendations:first aid
- quercetin and anti-histamines / some other herbs (reishi, cordyceps, mangosteen ellagic acid etc.) to reduce mast cell degranulation. These are a good first step and allow you to expand the range of things you can eat. Lots of the usual "adaptogen" herbs are effective.
- eat only fresh / natural foods as best as you can, as you will react less to them and give yourself a chance to recover.
These are both useful and important but don't really fix the problem, they are just masking it. As soon as you stop you relapse. So I tried some other things.
I realized pretty soon that I had massive vitamin deficiencies. I thought I was eating a healthy, balanced diet before but apparently I was getting nowhere near enough, of most things. B-complex / methylation protocol.
I loosely followed fredd's methylation protocol. Basically you need b-complex, with extra methyl b12 and methylfolate. If you are deficient in all sorts as lymies probably are this is DIFFICULT. Methyl B12 stimulates lots of bodily processes, so if you are lacking in the resources to make them run you will get a lot of fatigue. I would recommend just taking a good b-complex and seeing if that works without adding extra b12 (recommend thorne b-complex #12). If you want to run the full protocol I would recommend going to phoenixrising as there is a lot more information there.
The b12 protocol seemed to fix the MCAD, basically. After a few months on it I was not having reactions to foods anymore. However, it was very difficult to balance all the b-vitamins so I wanted to get off it (it is easy to end up causing other deficiencies from the b12). However my intolerances would always return when I got off the b12, so not a total cure.Calcium, A, D, K2, (E, K1).
The calcium is hard because it makes your mast cells degranulate more. I worked on building up slowly, trying to tolerate calcium. The others should not be too bad, but if you are deficient the A,D,K2 will probably cause herx. I also found I was very deficient in E and K1 while I was doing this so I have added them, but I don't think they are strictly necessary. Thymus extract
I believe most lymies have an overly involuted (depleted) thymus due to fighting infection for a long time. I added in thymus extract (nutricology) a few months after the MCAD was resolved, and it really made a big impact on my allergies - I didn't really have much food intolerance left but asthma and house dust allergies were greatly improved. This made me think maybe the thymus was the cause of MCAD, and I found I was able to stop the b12 without the food intolerances returning. It is a LOT easier taking just thymus extract too. Kidney extract (bonus supplement)
I don't think it is directly related to MCAD, but after the thymus I tried kidney extract (ancestral supps), which also had a large positive effect on my allergies. Not cured, but after these two I no longer need my asthma inhaler or antihistamines.
Nowadays I just take the thymus and kidney extracts every day (along with other lyme herbs etc). The b-vitamins and A/D/etc I take once every couple of weeks, as a supplement. I am not sure if they are necessary to recovering from MCAD or not, but they are definitely one way. If I had to do it again I would go with the thymus extract and b-complex first and then move onto the full methylation protocol if it failed.
Hope that helps someone. I can't promise to reply too much but will try and check back if anyone has questions.
Post Edited (terigoche) : 11/13/2019 1:58:03 AM (GMT-7)