Update on Reader’s Progress

This is one of three posts going out today. They are related but because of the length of each, a separate post is likely better for CFS readers. The posts are:

  • Followup on a reader’s progress. You may see the prior post from December 2015 here. She got whooping cough not long after that report, which set her back. She has been using the model, adapting it by experiment and experience.
  • A post on what Remission is. She feels that she is approaching at least partial remission and want some guidance from my experience
  • A post trying to re-illustrate what it means to be a model and not a protocol. The reader used the model and evolved her own protocol.

Overview Summary

Right before I started following this protocol, I was sleeping 12 – 18 hours per day, and had been for more than a year. Right before I quit my job I took two business trips. I kept having to break from meetings in order to sleep and it was very embarrassing. I had previously been low energy at times but this was worse than anything I experienced before. It would take everything I had to concentrate for 1.5 hours and then I would have to sleep at least a little bit in order to be able to think clearly.

That pattern almost without change for a year. I had about 1.5 hours good time in the am and 1.5 hours good time in the p.m. and the rest of the time I was sleeping or resting. Occasionally when I had to get something done I would down a bunch of energy drinks or something and power through the day and be really productive but I couldn’t do it very often. Sometimes I just slept all day.

So I would describe that as being at about 15 – 20 percent of a normal energy level.

As soon as I started this protocol, my energy level began improving markedly. (Keep in mind I also started allergy shots and got a tooth filled). I would say I had two weeks at about 50 percent energy and then about two weeks at 85 or 90 percent energy. It was amazing.

Then things started to fade, maybe back to about 40%. I thought at the time it was just the effectiveness of the various herbs and probiotics wearing off but *maybe* it was that having been exposed to the whooping cough and was in my incubation period.

I got sick very suddenly over about a 5 hour period while on a long drive over Christmas with what seemed to be bronchitis and was flat out in bed for six days. We were on vacation visiting family. On the seventh day, I pulled it together to drive home, which was SO LUCKY because two days later the whooping started and I was having uncontrollable coughing paroxysms and vomiting up to about 20 times a day. I didn’t actually feel sick really but I couldn’t really do anything, and driving would have been very unsafe. That was right around January 3.

I slept as much as I could through January, with the coughing/vomiting fits diminishing to once or twice a day. Family events …and there was a lot of family responsibility and stress that came with that, and I had days when my energy level was great followed by days of zero energy.

My life stabilized a bit in early March and I’d say that since then I’ve gone from an energy level of about 40 percent a day to now where I’m at about 60 – 70 percent. Not high energy but enough to get by, and trending positive.

December 2015:

  •  You said in your notes accompanying the post from me that I may have just happened to use the right herbs and probiotics for me right out of the gate. This is true, and it wasn’t an accident – it is because I had figured for a long time that histamine had something to do with my problems. About 10 years ago I tried the histamine-restricted diet and it worked immediately but it is very challenging to stick with and I just couldn’t do it after I had kids. I mean, I continued to avoid lots of stuff but I could no longer be a perfectionist about it. That’s why I started taking a daily antihistamine about 8 years ago and it did help with my symptoms. 
  • So, when I read your post about histamine-related CFS I was like, Bingo, that is it, and that’s when I started this.
  • Today, I re-read some of your posts on the subject, as well as the comment from someone who’d had initial success with treatment and then a gradual return of symptoms, which may have been a result of him shifting his pro-biotics. For myself, I was initially taking tumeric but stopped for about a month, and I just started it again. I also started taking the original form of B. infantis I was using – Babylife – which delivers more than Align (I got it at Natural Grocers for about 14 bucks in the refrigerator section. It has 3 billion living organisms per scoop and an adult dose is up to 6 scoops per day. Maybe that’s not the same as CFUs…perhaps you can enlighten me.) So I don’t know which it is but thought I would share that.  I think most of my B-infantis probably got knocked out before I was two because I had pneumonia twice when i was a baby.
  • I tried the chocolate treatment last night. Even though I love chocolate it’s going to be hard to choke down that much of it for two weeks. Anyway, it was interesting. After an hour or more I bloated, very painfully, for the first time since I started this whole process. Probably consistent with a big histamine-producing bacteria die-off. I drank some golden milk (tumeric) to try to ease the symptoms, and then before I went to bed piled on with oregano, tulsi and neem. I realize this is probably not what you are supposed to do. But, anyway, I woke up feeling great, and I am attempting to down my second dose of chocolate, which I am going to follow with a mega-dose of B. infantis. I will let you know what happens. 
  • I have been thinking about ways to just incorporate this stuff into my diet and I looked up a recipe for dark mole sauce, which seems to contain many of the recommended histamine-releasing herbs, for example clove and cinnamon, as well as chocolate. I have never had it but I think I am going to try some over chicken soon.
  • Based on your experience, I have started eating rye (I too have Scandinavian heritage) in the form of cooked rye berries, which can be used like rice or pasta for stir fry, salad, rice pudding-type dishes, etc. It really agrees with me and I thought I would mention it to you because you have talked about rye bread but not berries, which I like even better than bread. 
  •  We’ve introduced cumin at our dinner table to be used as a condiment like salt and pepper. It is basically delicious on everything. I realize it’s not one of the main helpful herbs but I think it is positive. 
  • Another relatively trivial thought — what I have notices since starting this is that I haven’t lost weight at all but my stomach is much flatter and I don’t bloat, which is an improvement. 🙂

February 2016

“Last I wrote to you I think I said I was hanging in there but had just got whooping cough. I still have it and am about six weeks into it. On the bright side, I do think some of my overall improvements are still holding. On the down side, it’s a long illness, and probably like many illness is capable of messing up the microbiome on it’s own, plus it has some characteristics that probably enhance the microbiome mess-up for the person with CFS or a related syndrome. Namely, the frequent vomiting that goes with whooping cough makes it difficult both to eat healthy foods, especially veggies (at least for me), and it’s difficult physically to swallow supplements and when I do I frequently throw them up.  

So the challenge is keeping the CFS treatment going. In a way, though, it’s been a good opportunity to rotate off some stuff, which I have done, and now I am starting to be able to swallow pills again, so I am re-starting the Vitamin D, Magnesiam, B6, and am also taking olive leaf, Triphala, alpha lipoic acid, and Swansons Lactobacillus Gasseri. I’m waiting for Miyarisan to arrive – the delivery has been delayed for over a month. And I am thinking about where to go after a few weeks of Miyarisan. I’m thinking of ordering Mutaflor and also the stuff…Bifido Maximus? That’s aimed mostly at the histamine issue.

On the bright side, most of my previous symptoms have not come back (sore skin, bloodshot eyes, uncomfortable/painful feet, swollen lymph nodes, asthma symptoms) so I feel like I am still ahead of the game compared to where I was when I started this in early October.

April 2016:

“By the way, in case you don’t remember, I’m the person who had the “miraculous” healing in October-November who then got whooping cough.

Just to keep you updated,  I’m now 90% symptom free from the whooping cough, and I feel like my energy level, which took a dive when I got sick but not as much as one might expect, is now improving and stabilizing again. Last month, I was using Neem as an anti-microbial/anti-inflammatory, and I think it worked very well. I tried using Olive Leaf just before that, with less satisfying results (but maybe I had a bad bottle), and I also used Triphala (which contains Haritake) and that seemed actually counter productive. As an adaptogen, I used Ashwaganda, which I liked, and now I’m out of it.

But I seem to have gotten quite a bit better mostly in the past couple of weeks, and here is what I have been taking (and my reasoning)

  • Tulsi (As an adaptogen. I can’t figure out if it’s anti-microbial or not)
  • Ginseng (As an adaptogen)
  • Magnesium 500 mg
  • Vitamin D 15,000 – 2000 mg
  • Vitamin C 1000 mg
  • Alpha Lipoic Acid (2 per day)
  • Bromelyn (2 per day)
  • Culturelle (since it helps with Vitamin D absorption) (1 per day)
  • Cardio Viva (since it helps with Vitamin B12 production) (2 per day) [Lactobacillus reuteri NCIMB 30242]
  • Align (1 per day)
  • Prescript Assist (1 pills per day)
  • Yakult (occasional, as a mood lifter – I was taking it consistently before)

Also allergy shots, an antihistamine, Advair 2X per day and Flonase.

I was taking 6 pills of Miyarisan per day and liking it a lot – among for one thing it seemed to be flattening my stomach … I have more on order.

And I’m very excitedly awaiting the arrival of my Symbioflor II which I will NOT take with Miyarisan.

Also, I am starting to exercise a *tiny* bit and am trying to be very mindful of how my body responds. I think I am feeling a little fatigued a day after exercise (I did 45 minutes of easy yoga one time, and played a little bit of beginner tennis [mostly to get my son out of the house]) but then am rebounding quite a bit stronger a day or two after. I have done just a few pushups, (like 3) which are far, far easier than when I was in the depth of my fatigue this time last year when I couldn’t even do one.

And in further good news a few days ago it was as if the gears realigned in my head and I am feeling mentally and emotionally capable of taking on my job search.

I’ve also started reaching out to people more than I have in years – because I feel good enough to do it – and then that is having a positive spiral effect.

But I am going to continue to be careful to pace and so forth. I don’t consider myself to be actually “in remission” yet – it feels like all of this could disappear tomorrow. How does one tell if one is officially in “remission?”

 

Comments

  • Neem and Tulsi are preferred over Haritaki. Haritaki also reduces E.Coli with other of the overgrowths. It’s more of a “Hail Mary” herb.
  • I will look at Advair  and Flonase. in a future post, I am curious. The question of how different antihistamine acts has come up in some conversations recently.