lassesen 7:47 pm on October 17, 2013

So what does my maintenance plan looks like?

I am recovered – and prefer not to relapse back into CFS again.

Probiotics:

One week at a time, followed by 1-3 weeks off them

E.Coli Nissle 1917 (Mutaflor)
Prescript-Assist:
Bifidobacterium infantis 35624
Lactobacillus Reuteri
Bacillus Coagulans
Streptococcus oralis, Streptococcus uberis, and Streptococcus rattus

Coagulation

Usually as needed, or one day each week

Racetams (Aniracetam, Piracetam, Pramiracetam )
Turmeric
Nattokinease
Lumbrokinease
Serrapetase

General

Regular parts of my diet

10,000 – 20,000 IU of Vitamin D3
Multivitamin with minerals
All Rye – rye bread (Non-GMO)
Goat Cheese
85% Dark Chocolate (190 gms)

As Needed if cognitive issues

ALA
Grape Seed Extract
Haritaki
Neem
Tulsi

nyul72 4:12 pm on October 20, 2013

Ken, thanks so much for sharing your experiences here. I’ve been taking Infantis 35624, Mutaflor, PrescriptAssist and Reuteri for a while, and I took the view that more was better so have been doing a week on each at a time, but culturing the capsule contents in soya milk, in a yoghurt making machine. It sounds like you just swallow the capsules, what are your thoughts on capsules vs yoghurt? It seems Mutaflor has an enteric coating, so I suspect caps may be better than yoghurt.

Also, when you’ve been sick, how long did it typically take your treatment regime to bring you back to health? I’m curious if you had to follow the regime for weeks or months before you saw significant benefits.

I’ve had ME for 14yrs, a family member has ulcerative colitis, so for me this approach you’re using seems like there’s a chance it may work here too, time will tell.
- lassesen 12:43 am on October 21, 2013
  
  With few data points (myself fro CFS, and wife for Crohn’s Disease), it is hard to predict. My impression is that the time to see results (distinct improvement) is 4-6 months. Once the improvement starts, it tends to build — provided you don’t “slip off the wagon” – i.e. You may go from complete gluten intolerance to light or moderate tolerant — then because of events (family gatherings etc), you press your tolerance too far and slip back.
  
  The biggest challenge that I have observed, is unwillingness to suffer the discipline, the herx OR in some cases, willing to suffer the herx — but the herx is so extreme that they have to bail. One person I know have had severe herx from every probiotic, a herx that may keep going for weeks after just one or two probiotics capsules.
  
  The reaction/herx very much depend on what bacteria you have, and the difference of strains is so huge, and our knowledge so sparse, that it is the roll of the dice.
  
  Please post about you experience. I am planning to put together a “tracking template” to assist people in monitoring their progress (often they improve, but do not remember how bad they were 3 weeks ago — hence stop because of “no improvement”)..
  - nyul72 2:44 pm on October 21, 2013
    
    There’s a possibility the probiotics have made me more resilient to activity, but I’ve made other changes recently (I ran out of gcmaf) so I can’t tell which is which. I’ll take any improvement, but always best to be cautious as this illness fluctuates anyway. Any improvement so far is minor. I’m not sleeping well (1-2hrs to get to sleep) but it’s manageable.
    
    I’m fascinated to find so many probiotics are available and to recognise the distinctions. I’m glad to have understood that lactobacillus isn’t everything. I’ve just ordered some Biogaia (btw Ken your piece refers to it as BioGala), Fem Dophilus, Threelac, and DuraFlora. I’ll just rotate them so I do each for a week. I’m stopping yoghurts and just necking capsules.
    
    I spoke to the Breakspear about Mutaflor – they keep it in the fridge, and ship it with ice so I’m ordering some more from them. They seem a decent UK supplier.
    
    Ken, during that 4-6months that you thought led to a distinct improvement, did you see any consistent pattern in what symptoms fell away first, and what made you think the treatment was working?
    
    I’ve had herx before, years ago, and it was indescribably horrendous, but so far I’ve certainly been lucky.
    
    I fill out a questionnaire of all my treatments, diet, and a score for how I’m feeling every week, as years back I was much better for a period, and without records I have no clue what (if anything) I did that provoked that improvement.
nyul72 4:14 pm on October 20, 2013

PS Really enjoying your articles on Health Rising
Ismail 12:47 am on October 24, 2013

Congratulations on your recovery!

Many thanks for this blog (which i have discovered yesterday and have been reading for some time now). Very interesting possible explanations of CFS. I will certainly implement a few recommendations noted here, specifically regarding probiotics.

I was interested to hear if you have any idea of why i had an allergic reaction to both CoQ10 (of which is listed as a “core” on this blog) and SAM-E – both of which are known to be required for the synthesis of ATP production. My allergic reaction consisted of a “lump” in my throat which was extremely uncomfortable, although did not require any ER visit.

All in all, keep up the good work here. I think you are on to something.
www.facebook.com/mevsmeblog 2:41 pm on January 20, 2014

Ken, any thoughts on maltodextrin in mutaflor? did you opt for the liquid suspension or the capsules?did you culture yours in yoghurt?
- lassesen 3:18 pm on January 20, 2014
  
  I have only one form of Mutaflor available to me, capsules, which I bring in from Canada. Given the high benefit, the other ingredients in it are really moot questions to me.
  
  We have been unsuccessful trying to culture it (and since I working at a good job, the cost is acceptable — especially since it is part of a rotation and not continuous).
  
  According to http://en.wikipedia.org/wiki/Maltodextrin it is glutten free, and it is being taken by a hyper-gluten sensitive individual without any problems.
  - www.facebook.com/mevsmeblog 8:25 pm on January 29, 2014
    
    Thanks! also what is your stance on taking mutaflor at the same time as another probiotic, would you take mutaflor on a seperate week? or is there a benefit in taking mutaflor and something like prescript assist in combination?
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