Starting the Lassesen Protocol

[Chrysalis Dreaming]

Hi there!
Sorry for the long silence. My life fell apart 4 weeks ago when a close friend was diagnosed with late stage cancer. Much of my time has been taken up with hospital visits and supporting his family. Alas, he died last week.

On a physical level, I am improving but it's slow going. I could only take the Mutaflor (E. Coli Nissle) for 2 or 3 days before I became very sick. I decided to put those away for another 12 months before trying them again!

When I recovered from that, I took some oregano but this gave me a very strong histamine reaction. I gather this is likely to be because it is killing off the lactobacillus bacteria, but that is not what I want since I am low in lactobacillus.

I didn't notice any perceptible difference in my health after these 2 experiments.

Most recently, I have taken a probiotic by Orthoplex called S. Bifido Biotic. https://www.bioconcepts.com.au/probioticstrains2
It contains Bifidobacterium longum BB536 which, according to the advertising, "has been shown to reduce the cell numbers of d-lactate producing pathogens". I took one tablet and it made me sick on the stomach. I let myself recover for a week and then noticed that I had less pain and more energy. So today I took 1/8 of a tablet to see if I could handle a small dose without too many symptoms. But no, my intestines are very unhappy.

Still, if it does succeed in giving more energy and less pain, I may just stick with it. Or take a small dose once a week to see if it makes a long term improvement.

 

[TigerLilea]

The doctor put me on a course of Amoxicillin which was intended to target the S. Parasanguinis but leave the E. Coli alone. For the first few days I felt better, but after a while I started getting bloating in my stomach. I've finished the antibiotics now and have started taking probiotics.

Amoxicillin is what has lead to all of my problems this year. I had a sinus infection and started on the antibiotic at the beginning of March. A week in I got severe diarrhea, a headache, and felt extremely lethargic to the point of not being able to do much of anything. The severe diarrhea went away within a couple of days of stopping the Amoxicillin but my bowels have never gone back to normal. The lethargy and headache, also, have not gone away and it is now two months since stopping the antibiotic.

For me the Penicillin family of antibiotics have been the very thing that have caused my CFS and have made it worse 25 years later. It's only now that we have made the connection.

 

[Chrysalis Dreaming]

Hi TigerLilea,

Your comments have made me think a bit about the antibiotics I was given when I was younger.

When I was a child, my mother had the attitude, that if you didn't walk out of the doctor's office with a prescription for antibiotics, then you just wasted your time and money. As a result, I took a LOT of antibiotics as a child. Mostly bactrim but also amoxicillin.

When I first became sick with ME/CFS, the first thing the doctor did was give me antibiotics. And when that didn't work, I was given long term pencillin. I can't remember exactly how long I took them for, but I'm sure it was more than 6 months. And during that time, I gradually became sicker and sicker.

All this time researchers have been trying to discover what viruses/bacteria/infections the patients with ME/CFS have in common. Perhaps they should have been looking for commonalities in our treatments!

No more probiotic testing for another couple of weeks for me. I took some ibuprofen on an empty stomach last week and am still paying the price for it.

 

[TigerLilea]

@Chrysalis Dreaming - I can't get testing here where I live to see what probiotics I should be taking so I'm throwing everything at my gut right now. Twice a day I'm taking Prescript Assist (which is a soil based probiotic) along with an 8 strain lacto/bifido probiotic. I do that with breakfast and at bedtime. With lunch and dinner I'm taking Florastor which is a yeast probiotic. I'm also eating bacteria loaded yogurt twice a day, and have a yummy bowl of sauerkraut for lunch each day. My home brewed Kefir will be ready for drinking tomorrow so I'll also be adding that into the mix. I'm also trying to eat as many prebiotics as I can each day.

I'm not considering taking antibiotics to kill off any gut bacteria as I know my doctor would never agree to it, and after having been on countless antibiotics over the past 25 years, I don't want to cause anymore damage to my gut microbiome than has already been done.

The more I read about the gut microbiome, the more I think that this could explain CFS/ME. It isn't just the antibiotics that are the problem. It's also pain killers, the Pill, poor diets, stress, even viral and bacterial infections can mess up the gut bacteria. I'm excited to see what research will discover over time. And hopefully sooner rather than later.

 

[Lissa]

Hi TigerLilea,

Your comments have made me think a bit about the antibiotics I was given when I was younger.

When I was a child, my mother had the attitude, that if you didn't walk out of the doctor's office with a prescription for antibiotics, then you just wasted your time and money. As a result, I took a LOT of antibiotics as a child. Mostly bactrim but also amoxicillin.

When I first became sick with ME/CFS, the first thing the doctor did was give me antibiotics. And when that didn't work, I was given long term pencillin. I can't remember exactly how long I took them for, but I'm sure it was more than 6 months. And during that time, I gradually became sicker and sicker.

All this time researchers have been trying to discover what viruses/bacteria/infections the patients with ME/CFS have in common. Perhaps they should have been looking for commonalities in our treatments!

No more probiotic testing for another couple of weeks for me. I took some ibuprofen on an empty stomach last week and am still paying the price for it.

Bactrim did me in.... When Leviquin didn't work for a respiratory infection, they gave me Bactrim. I wound up with severe headaches, tachycardia, and a full body drug rash that lingered for days despite ER treatments.

That was my first encounter with super-extreme fatigue, and was about 6 years before I became fully incapacitated after another mystery respiratory illness.

(Prior to Bactrim incident I'd had a decade or so of random spells of beyond the norm fatigue, but pressed on without a clue...)

Took a couple months to semi-recover after Bactrim. Never bounced back after the last "flu".... Going on 6 years disabled now. And boy is my gut messed up!

Ditto stories posted here... Bloat bloat bloat, diet diet diet, loads of probiotics, and add a primal scream!

 

[TigerLilea]

Bactrim did me in....

I was put on Bactrim several years ago and after two days I could barely walk I was in so much pain. Thankfully the next day I was phoned by my doctor and told to stop taking the med as the culture came back negative and I didn't have an infection after all. It wasn't till months later I discovered that it was the antibiotic that caused the leg pain in the first place. Apparently that was a very common side-effect for this drug.

 

[Chrysalis Dreaming]

Hi there,
Thought it was time I posted another update.
I took 1/2 a tablet of Blackmore's Digestive Biobalance which contains Lactobacillus Reuteri for 2 weeks and I felt much better. I felt a bit queasy to begin with, but that subsided very quickly. After about 10 days I tried to increase the dose to 1 tablet, but started to get bad stomach trouble so dropped back to 1/2 a tablet.

For the past few days I've been drinking rhubarb tea and I feel like death warmed up. My stomach is bloated and I don't want to eat anything, plus I ache everywhere. This may be a herx reaction or the tea may be killing off some of the good bacteria as well as some of the bad. I'm going to stop with the tea as it seems to be making me worse not better.

Ken has posted some recommendations following the surveys that he posted so in a few days time when my stomach is back to normal, I will try one of these. https://cfsremission.wordpress.com/2016/08/14/recommendations-from-surveys/