lassesen 12:01 am on December 24, 2015  

A letter from a reader

It is Christmas and the best Christmas present that I can give is hope. A reader sent me this email and consented to have it shared
Note: This reader may have be fortunate starting with just the right things for her microbiome dysfunction – each person’s microbiome is unique (more unique than DNA).  You may or may not experience the same response if you follow her steps. 
Hi, Ken!
 I hope you are doing well!  I am sorry I haven’t sent notes back to you right away. I started several times but was foiled by a computer that is now having its hard drive replaced. I want to thank you again for the work you are doing, for being so science-based and detail-oriented. You truly have helped me very, very, very, very much.
The purpose of this e-mail is to give you a summary of my symptoms, treatment and progress. Any thoughts you want to share with me are welcome, and you can use this in your blog any way you want.  Keep in mind that I don’t have a diagnosis of CFS, though I do think I have something on that spectrum.
At the time I found your blog, these were my symptoms, all of which, disappeared or diminished within days  of taking action based on reading your blog (except for the asthma and allergies, which nonetheless somewhat better)
  • Hypersomnia (12-16 hours sleep per day) Several shorter episodes in my lifetime, but continuous for the past couple years, and becoming very bad fall 2014. At the time I had a bunch of medical tests that were all negative, supposedly, but when I went to a back-up MD for a sore throat fall, he looked at the test results and said they showed that at the time of the test I had active mononucleosis. That validation for my exhaustion last year is part of what spurred me to think something medically really was wrong and to redouble my efforts leading to finding your blog.
  • Post-exercise exhaustion/malaise. Exercise has always been one of my favorite things when I am doing it, but in the past several years I would get really into it and then crash.
  • Intense brain fog and very poor executive function (Getting worse these past 10 years. It was to the point I virtually stopped making any kind of social or other appointments because I was afraid I would miss them)
  • Fatigue when not asleep (several years) (A three-hour drive would sometimes take seven because I would have to pull over and sleep.
  • Small but chronically painful lymph nodes (about 10 years) I just figured I was constantly fighting off a cold or something.
  • Chronically coated tongue (about 10 years) Doctor always said it was due to post-nasal drip due to allergies.
  • Distracting foot discomfort when sleeping (not pain, not swelling, hard to describe) Affected by heat and foods, and especially tea and coffee but not caffeine in other forms.
  • Occasional boils in groin area (supposedly common for post-menopausal women)
  • Intersticial Cysctitis (feeling like you have the beginning of a bladder infection when you don’t)
  • Intense hay-fever (ongoing seasonally since childhood, now all year round)
  • Pet allergies
  • Painful sensitive skin
  • Asthma (emerged in adulthood, usually episodes are virally induced)
  • Snoring (Recently had gotten quite bad according to my husband.)
  • Depression, maybe (Now I am rethinking symptoms that I have in the past attributed to depression, like hypersomnia.
  • Irritable bowel symptoms (which started 17 years ago, and which I have almost always successfully controlled via diet.
  • Sinus pain in face
  • Jaw pain
  • Conjuctivitis
  • Gas
Ha!! I’m sure I sound like I was more fun than a barrel of monkeys.  I actually presented suprisingly well given all of this.  I have kept things, under control with antidepressants, anti-anxiety meds, antihistamines, advil, and so forth.
 I had gone to my GP for this stuff periodically for years and I gradually got the impression he thought I was a whiner or perhaps just someone who needed to accept I was aging badly. So I just attributed my fatigue  to stress and burnout. ..[lots of life stress]… so I just concluded I was worn down and needed to take care of myself. Oh, and up until last year, I maintained a fairly responsible work at home job for 11 years for a national program where my last title was Associate Director, and that was stressful too. During the time I had mono but didn’t know it, and couldn’t work no matter how hard I tried, I thought I must just be irretrievably burnt out on my job, and because my husband had a great job at the time, I quit, with the intention of exercising and nutritionizing my way back to health, but it didn’t work, I just kept sleeping.
Here’s what I did after reading your blog (the timeline may not be quite right but I think I have been doing this for about 9 weeks now in all)
1. Started with turmeric (in the form of Golden Milk) and Yakult.  I did this for about a week.
2. Added Bifidobacterium infantis.
3. Added oregano oil.
4. After two weeks of that, added tulsi and neem.
5. Switched out the Bifidobacterium infantus that came with a scoop with Align.
6. Started taking Culturelle.
7. Took a couple of weeks off the oregano, tumeric, tulsi and neem,  while continuing the probiotics
8. Started 20,000 IU per day of vitamin D
9. Started tumeric again about a week ago.
10. Added daily Alpha Lipoic Acid and vitamin B6
11. Started the oregano, tulsi and neem about two days ago.
12. I occasionally take ginseng, because a friend who recovered from CFS said she used it.
Other things to keep in mind are that I started allergy shots in around November (had been preparing for them since spring) and got a cavity filled about 6 weeks ago, which may have put a stop to some bacterial activity. I also occasionally did oil-pulling with coconut oil, swished the Bifidobacterium infantis around in my mouth, and gargled the Yakult.
Anyway….for the first three weeks or so the results were little short of miraculous. I was walking on air. I felt better than I have in 25 years.  I would still say I am doing AMAZINGLY better, to the extent I have begun looking for a job (would have waited a bit but my husband just got laid off.)
However, the fatigue is coming back a bit, as is the foot discomfort, which makes me worry that I am headed for another crash and burn.
I may have sabotaged my recovery a bit early on — I felt so much better that I started drinking coffee (which is my favorite thing but haven’t been able to unreservedly enjoy for years), and having a little bit of alcohol and pasta. And, having heard how careful one is supposed to be around exercise, I may have overdone it, even though I was trying to really pace myself.
I am planning on ordering the probiotic you mentioned that just came out recently, that focuses on histamine-producing bacteria.  I’ve looked at a couple of other ones that aren’t available in this country, but don’t feel like taking on the international piece right now.
And…I am thinking about taking a large dose of dark chocolate.
You may wonder about herxing – I had some symptoms of that when I first started with the oregano, and fear of that is why I am holding back on embracing chocolate, having had herx problems from too much chocolate before (I now realize) (Main symptom is very bloodshot eyes)
 Thanks again for all you are doing and I will continue to stay in touch. I love your blog and whenever I read it, just when I think that you have already written as much as you possibly can that applies to my situation, you write more.
I hope you have a very nice holiday season, whatever you celebrate.
Gratefully,

P.S. A couple of things…you have so much info on your blog, even reading the posts where you put things very simply I had to go over them again and again due to brain fog to come up with a plan. Dont have any specific suggestions but I bet others have had that issue too.

Also, is there a simple way to access all your posts and read them in chronological order from the beginning?

My comments

The reality is that dysfunction bacteria are adaptive and will mutate to survive in a hostile environment.  In the case of anti-bacterial, it means rotation is the key to deal with this adaptation. Anti-bacterial includes herbs, probiotics and prescription antibiotics.

I would suggest adding the following herbs to your rotation:

  • Olive Leaf
  • Wormwood (especially if you have MCS or EHS)
  • Haritaki

For probiotics,

Other supplements:

  • Mastic Gum — chew in mouth
  • Gum Arabic– chew in mouth
  • Boswellia — aka Frankincense
  • Ashwanghada

The latter two will help with cognitive function (see earlier post). The two gums, if chewed, are anti-inflammatory, anti-bacterial and should reduce any dysfunctional bacteria reserves in the mouth that may repopulate the gut. I will be doing a post on available oral probiotics in the next week.

Miyarisan and ashwanghada should both make a significant impact on stress.

Stabilizing the recovery of a healthy microbiome takes months, there are residue bacteria (some may be “sleepers”, i.e. go into a dormant state) that can repopulate weeks later. Sleepers are not affected by anti-biological agents because they are dormant and do not interact. These species can be robust (“tough”) and aggressive (“fast breeders”).

I continue to protect my recovery by doing rotations of probiotics, herbs and spices — usually just one at a time for a week before switching to something else. If any sleepers awake, I want a reception to be waiting for them!

Concerning your PS — I will look at a creating a “Cook Book” page over the holidays. A list of items in tables:

  • Pick one of the following and try for 2 weeks…
  • With the above, pick one of the following…
  • Slowly add this to regular ongoing supplements (i.e. Vitamin D, Zinc, Magnesium…)

with links to a related blog post on this specific item.

This will be added to the MENU BAR — to make it easier to find…

 

REMINDER: This is educational information only. Always discuss changes of diet, supplements and probiotics with a knowledgable medical professional before doing any modifications.