Starting the Lassesen Protocol

[Chrysalis Dreaming]

Hi All,

I've been intrigued by Ken Lassesen's recent post, Is Lactic Acidosis Behind Many Chronic Fatigue Syndrome / Fibromyalgia Symptoms?
I couldn't find any threads relating to his approach, so I thought I would start a new one.

My history:
I was diagnosed with ME/CFS 30 years ago and was so sick I was housebound for about 3 years. After a few years with careful diet and naturopathic treatments, I became a little better and was able to go to uni part-time. Then I was diagnosed with Hashimotos and put onto Thyroxine. Again, I improved but didn't become completely well. About 12 years ago, my health began to decline and I was diagnosed with Fibromyalgia. By 8 years ago, I was so exhausted I had to give up work and was back to being housebound again.

All through this, I have had stomach problems and the only advice I have been given by Doctors/Naturopaths is to take Acidophillus (and maybe double the dose if that doesn't seem to work!) About 6 years ago, I started to become very sick on the stomach every few weeks. The Dr diagnosed Gastritis put me onto proton-pump inhibitors (useless) and zantac and mintec (kind of helped a bit) but this didn't seem to be fixing the problem, only (just) keeping the symptoms at bay. Last year I had a gastroscopy but it didn't find anything.

This year I started working a few hours a week for a chiropractor who is very keen on the GAPS diet. At her prompting, I have cleaned up my diet a lot in the past 12 months - I'm gluten and diary free now. I don't eat any processed food anymore and I try to limit my intake of sugar (I have a serious chocolate problem!). I can't seem to do the full GAPS protocol, because it is too low in carbs and I get too sick. Also some of the foods on the "OK to eat" list make me sick. For a while, I thought I was sensitive to FODMAPS, but again, some of the foods on their "OK to eat" list make me sick.

4 months ago I began taking Natural Desiccated Thyroid for the Hashimotos and that has made a big improvement in my fatigue levels. But I still suffer a lot of pain and can only work part time. I also have continuing stomach problems, so I'm pretty sure I have a bacterial imbalance going on.

Which brings me back to Ken Lassesen's post.

The Lassesen approach
Ken's approach is to pulse non-Acidophillus probiotics and herbal antibiotics to try and normalise the microflora profile in the gut. He treated himself on the assumption that his microflora profile was the same as the profiles described in research articles.

I'm thinking of trying his suggestions, but I'm not really sure where to start. Yesterday I went to the health food store and bought some Lactobaccillus Reuteri and had one tablet last night before bed. It gave me a strong Herx reaction (flu-like aches and pains, fever/chills).

I'm kind of secretly pleased that it made me sick, cause that shows it is doing something (and likely killing off the bad bacteria), but I will need to lower the dose if I want to keep going.

The thing is, it is so long since I was diagnosed with ME/CFS that I'm wondering if it is worth getting my microflora tested just to see what my starting profile is? After all, if I dose the wrong way, I could make myself very sick.

Is there anyone who has tried this approach? What was your experience?

Cheers,
Barbara

 

[tandrsc]

I'm thinking of trying this as well.

He has an example plan at the end of this blog:
http://www.cortjohnson.org/blog/201...cs-change-gut-flora-chronic-fatigue-syndrome/

This site tells you how much capsule sizes hold ("00" is just over 700mg):
http://capsuleconnection.com/capsules

If you are using teaspoon measures, 1/4 tsp is about 700mg. I have bought various powders over the past couple of years and that's the conversion that is usually on the packet.

I'm planning building up on each of the herbal antibiotics one at a time, take for 2 weeks (as he suggests) then stop and do the same with the next herbal antibiotic.

The probiotics are a little out of my price range so I'm going to try the herb only route for now and munch on lots of live yoghurt, miso and sauerkraut.

 

[Chrysalis Dreaming]

Thanks for the info on how much a "00" capsule will hold and what that is in teaspoons.

Let me know how you go with the herbs. I will need to order them over the internet so it will be a week or two before I get them.

I am now thinking I will get the microbiota testing done before I start this protocol. That means I need to stay off all probiotics for 2 weeks, and with my grumpy tummy, that will be difficult. But I would rather have a good idea of where I am starting from than feed myself the wrong stuff and make myself sicker.

 

[Cort]

Thanks for the info on how much a "00" capsule will hold and what that is in teaspoons.

Let me know how you go with the herbs. I will need to order them over the internet so it will be a week or two before I get them.

I am now thinking I will get the microbiota testing done before I start this protocol. That means I need to stay off all probiotics for 2 weeks, and with my grumpy tummy, that will be difficult. But I would rather have a good idea of where I am starting from than feed myself the wrong stuff and make myself sicker.

Good idea on the microbiota testing. Please let us know how that turns out and good luck on the protocol. I will inform Ken of this post...and maybe he will chime in...

 

[Ken Lassesen]

Hi All, Cort pointed out this forum and I will regular check if there are any questions or issues.
One technical point, I do not have a PROTOCOL, I have a MODEL.
A good model is an construction that agrees with most of the known facts and have predictive power.
The model provides a filter thru which various probiotics, supplements, antibiotics etc may be filtered. The yield is a list of items that are candidates worth trying.

As a FYI, I had a conversation with a bed-ridden, almost ready to be moved into a care facility person yesterday, and suggestion (to always be discussed with a very knowledgable health professional before starting was):
The following is my suggestion for starting with a person with severe CFS who have to self-nurse themselves.

• Teas (Easier than pills) -- Tea bag or loose tea are listed below. These are antimicrobials against the species usually high in CFS.
  • 3 cups a day of neem tea [ongoing]
    • http://www.amazon.com/Dr-Robert-Nee...=UTF8&qid=1445117416&sr=8-3&keywords=neem+tea
    • http://www.amazon.com/Frontier-Bulk...UTF8&qid=1445117416&sr=8-10&keywords=neem+tea
  • 3 cups a day of tulsi tea [ongoing]
    • http://www.amazon.com/Organic-India...UTF8&qid=1445117522&sr=8-2&keywords=tulsi+tea
    • http://www.amazon.com/Davidsons-Tea...UTF8&qid=1445117522&sr=8-5&keywords=tulsi+tea
• 15000 IU of vitamin D3/day -- high levels in the normal range have reduced symptoms. It will take a long time to get your level up to that level. [ongoing]
• Probiotics -
  • Miyarisan tablets (C. butyricum MIYAIRI) http://www.amazon.com/630-Tablets-Miyarisan/dp/B000FQUNB0/ref=sr_1_fkmr0_1?ie=UTF8&qid=1445117217&sr=8-1-fkmr0&keywords=Miyarisan+tablets+(C.+butyricum+MIYAIRI) start at one and work up to 6 /day -- for one month
    • suggest paying for fast shipment
  • a week or later Prescript Assist, http://www.amazon.com/Prescript-ass...d=1445117351&sr=8-2&keywords=Prescript+Assist start at one and work up to three for one month
• reservatol (anti-inflammatory) http://www.amazon.com/Doctors-Best-...UTF8&qid=1445118313&sr=8-12&keywords=Knotweed [ongoing]

 

[Cort]

T

Hi All, Cort pointed out this forum and I will regular check if there are any questions or issues.
One technical point, I do not have a PROTOCOL, I have a MODEL.
A good model is an construction that agrees with most of the known facts and have predictive power.
The model provides a filter thru which various probiotics, supplements, antibiotics etc may be filtered. The yield is a list of items that are candidates worth trying.

As a FYI, I had a conversation with a bed-ridden, almost ready to be moved into a care facility person yesterday, and suggestion (to always be discussed with a very knowledgable health professional before starting was):
The following is my suggestion for starting with a person with severe CFS who have to self-nurse themselves.

• Teas (Easier than pills) -- Tea bag or loose tea are listed below. These are antimicrobials against the species usually high in CFS.
  • 3 cups a day of neem tea [ongoing]
    • http://www.amazon.com/Dr-Robert-Nee...=UTF8&qid=1445117416&sr=8-3&keywords=neem+tea
    • http://www.amazon.com/Frontier-Bulk...UTF8&qid=1445117416&sr=8-10&keywords=neem+tea
  • 3 cups a day of tulsi tea [ongoing]
    • http://www.amazon.com/Organic-India...UTF8&qid=1445117522&sr=8-2&keywords=tulsi+tea
    • http://www.amazon.com/Davidsons-Tea...UTF8&qid=1445117522&sr=8-5&keywords=tulsi+tea
• 15000 IU of vitamin D3/day -- high levels in the normal range have reduced symptoms. It will take a long time to get your level up to that level. [ongoing]
• Probiotics -
  • Miyarisan tablets (C. butyricum MIYAIRI) http://www.amazon.com/630-Tablets-Miyarisan/dp/B000FQUNB0/ref=sr_1_fkmr0_1?ie=UTF8&qid=1445117217&sr=8-1-fkmr0&keywords=Miyarisan+tablets+(C.+butyricum+MIYAIRI) start at one and work up to 6 /day -- for one month
    • suggest paying for fast shipment
  • a week or later Prescript Assist, http://www.amazon.com/Prescript-ass...d=1445117351&sr=8-2&keywords=Prescript+Assist start at one and work up to three for one month
• reservatol (anti-inflammatory) http://www.amazon.com/Doctors-Best-...UTF8&qid=1445118313&sr=8-12&keywords=Knotweed [ongoing]

Thanks Ken!

 

[Issie]

Yes, thanks Ken. Definitely going to be adding Prescript Assist. Have added Neem and Cats claw. Rotating them. I don't do well with Basil - but could have been a herx was years ago. May need to try again.

New antibiotic is still kicking me. Doc lowered it down to soften the herx. He feels encouraged that I'm so miserable on it. Ha! I guess we have to feel worse to feel better.

Issie

 

[tandrsc]

Let me know how you go with the herbs. I will need to order them over the internet so it will be a week or two before I get them.

Well I've done 2 weeks each of Astragalus, Tulsi and Neem ( in that order).

I've also been taking garlic and ginger (Ken lists these in one of his blogs as biofilm breakers), but I happened to be taking those anyway.

I've been eating lots of fruit and veg; plus some live yoghurt, sauerkraut and miso. These should all feed my good bacteria. And there are all those lively anti-inflammatories in the fruit and veg.

I haven't had any herx-like reactions and and I don't feel any better.

Oh well, it was worth a try.

Neem tip: Neem tastes horrible - good luck to anyone to anyone who manages to drink it as tea. Fortunately, neem powder dissolves easily in cold water which means you can mix it with juice and drink it quickly.

 

[Cort]

Well I've done 2 weeks each of Astragalus, Tulsi and Neem ( in that order).

I've also been taking garlic and ginger (Ken lists these in one of his blogs as biofilm breakers), but I happened to be taking those anyway.

I've been eating lots of fruit and veg; plus some live yoghurt, sauerkraut and miso. These should all feed my good bacteria. And there are all those lively anti-inflammatories in the fruit and veg.

I haven't had any herx-like reactions and and I don't feel any better.

Oh well, it was worth a try.

Neem tip: Neem tastes horrible - good luck to anyone to anyone who manages to drink it as tea. Fortunately, neem powder dissolves easily in cold water which means you can mix it with juice and drink it quickly.

I wonder how long it should take to see results?

 

[Ken Lassesen]

Hi, I have just added a new post, looking at how to determine if something has an effect
https://cfsremission.wordpress.com/2015/12/11/what-to-look-for-and-not-look-for/
It was 10 weeks after starting antibiotics that things turned for me. I ascribed the turning to the Tulsi that I had been taking for the two weeks prior (I ascribed based on studies finding that it improved neurological conditions).
[bimg=945|http://me-pedia.org/index.php?title=Ken_Lassesen%27s_model]https://cfsremission.files.wordpress.com/2015/12/screen-shot-2015-12-11-at-12-32-04-pm.png[/bimg]
In your case, the "live yoghurt, sauerkraut and miso" means that you are dosing up on lactobacillus. General lactobacillus is not good. It is inflammatory. It also has little effect on the High families and actually reduces the low families.

 

[tandrsc]

In your case, the "live yoghurt, sauerkraut and miso" means that you are dosing up on lactobacillus.

Not "dosed" exactly as I only added them here and there when I fancied them, but I take your point. I know not to buy anymore.

Thanks for the new post.

 

[Chrysalis Dreaming]

Happy New Year Everybody!!

Sorry I haven't posted for so long, but things got a bit busy in the lead up to Christmas.

I had the microbiota testing done and the result were:
Aerobe: Anaerobe ration LOW
Streptococcus Parasanguinis HIGH
E. Coli LOW
Lactobacillus LOW
Bifidobacterium LOW
Clostridium Normal

I was actually quite excited when I got these results because it's the first test I've had that has shown anything wrong!!

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. The probiotic I am currently taking is Ultra Flora Plus which contains L. Acidophillus, Bifidobacterium Lactis and L.rhamnosus. I have some Biokult here that has a lot of different probiotic strains in it (http://www.bio-kult.com/about-bio-kult/319/bio-kult) so I'll start taking some of that too. I'll look at starting the herbs after I have done a week or two of the Biokult.

Ken - thanks for chiming in on this post! I take your point about your ideas being a theory not a protocol. I do have a question about fermenting foods. I have been interested in making some sauerkraut and kefir because I assumed that naturally fermented foods would contain a wide range of probiotic strains, but I note that in your earlier post you suggest that fermented foods may not be beneficial because of the Lactobacillus. Are there any types of fermented foods which you think may be better than others to consume?

Thanks so much for all your work, Ken!!

 

[Cort]

Happy New Year Everybody!!

Sorry I haven't posted for so long, but things got a bit busy in the lead up to Christmas.

I had the microbiota testing done and the result were:
Aerobe: Anaerobe ration LOW
Streptococcus Parasanguinis HIGH
E. Coli LOW
Lactobacillus LOW
Bifidobacterium LOW
Clostridium Normal

I was actually quite excited when I got these results because it's the first test I've had that has shown anything wrong!!

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. The probiotic I am currently taking is Ultra Flora Plus which contains L. Acidophillus, Bifidobacterium Lactis and L.rhamnosus. I have some Biokult here that has a lot of different probiotic strains in it (http://www.bio-kult.com/about-bio-kult/319/bio-kult) so I'll start taking some of that too. I'll look at starting the herbs after I have done a week or two of the Biokult.

Ken - thanks for chiming in on this post! I take your point about your ideas being a theory not a protocol. I do have a question about fermenting foods. I have been interested in making some sauerkraut and kefir because I assumed that naturally fermented foods would contain a wide range of probiotic strains, but I note that in your earlier post you suggest that fermented foods may not be beneficial because of the Lactobacillus. Are there any types of fermented foods which you think may be better than others to consume?

Thanks so much for all your work, Ken!!

I've heard that lactobaccillus might not be good because of lactic acid - although your lactobaccilus is low already. This field is so new that it's hard to draw conclusions. Congratulations on finding something off finally and good luck on the protocol. Check a blog tomorrow on a probiotic success story..

 

[Chrysalis Dreaming]

Hi Everyone!

Sorry I haven't checked in for a while. My health has been very up and down, and I've been very busy at my part-time job and kind of collapsed with exhaustion when I am home.

I've been trying various different approaches with limited success so far.

In late Dec and early Jan, I tried 2 courses of amoxicillin to kill of the strep, and although I felt better for a few days, I rapidly began to feel worse. Lots of bloating and pain the stomach, followed by diarrhea. Amoxicillin was chosen because it supposedly leave e. coli alone, but I think it is quite indiscriminant about killing other bacteria!

After that, I went back to taking probiotics. After reading some of Ken's work, I stopped taking probiotics with Lactobacillus Acidophillus. Ken's theory is that Acidophillus kills off e.coli so if you are low in e. coli, you should avoid acidophillus. I began taking other probiotics which contained Lactobacillus plantarum, Lactobacillus rhamnosus, Lactobacillus paracasei, and Saccharomyces cerevisae (boulardii).

And I got really sick on the stomach again. After talking to my boss (a chiropractor interested in the gut bacteria stuff) I realised that when I cut out the acidophillus, I also stopped taking the Bifidobacterium which is almost always combined with acidophilus.

So last week I added some bifidobacterium lactis which has definitely improved things. (It's difficult to get bifido only probiotics in Australia, and this was the only one I could get). My digestion has been much more stable since I started taking it. I've had to lower the dose of lactobacillus tho. I was starting to get a lot of pain in my neck and shoulders and I assume that was from lactic acid production.

I'm struggling with my diet - I LOVE chocolate and am prone to eating too much of it. I know I need to reduce sugar but I am finding it difficult.

Ken posted some really interesting information on his blog about various different herbs to try. https://cfsremission.wordpress.com/2015/12/31/herbals-for-treating-cfs/
After studying this for a while, I have decided to try dried sage next week and then move to Lactobacillus reuteri for the next week. I will probably try some Tulsi after that.

Cheers
Barbara

 

[RuthAnn]

Thanks for that link, Barbara. I didn't realize Ken was still blogging. It's very pertinent information for me right now, too.

Keep us posted on how you are doing with it.

 

[RuthAnn]

Hi, I have just added a new post, looking at how to determine if something has an effect
https://cfsremission.wordpress.com/2015/12/11/what-to-look-for-and-not-look-for/
It was 10 weeks after starting antibiotics that things turned for me. I ascribed the turning to the Tulsi that I had been taking for the two weeks prior (I ascribed based on studies finding that it improved neurological conditions).
[bimg=945|http://me-pedia.org/index.php?title=Ken_Lassesen%27s_model]https://cfsremission.files.wordpress.com/2015/12/screen-shot-2015-12-11-at-12-32-04-pm.png[/bimg]
In your case, the "live yoghurt, sauerkraut and miso" means that you are dosing up on lactobacillus. General lactobacillus is not good. It is inflammatory. It also has little effect on the High families and actually reduces the low families.

Ken, so cool to see you here! I had found your site so long ago when it was one of the first sites with good information about chronic fatigue! I didn't realize you were still blogging. Thank you for all the information you have provided.

Because of Barbara's post I got my tulsi tea back out and am going to try bifidobacteria that's been sitting in my fridge for a while.

I see that you sometimes recommend Vitamin D and sometimes calcium, too. I have a coral calcium that I didn't realize comes with Vitamin D in when I ordered it. I tried taking it a few times and either had a bad reaction from it or from something else going on. I just quit dairy and am wondering now about fulfilling calcium requirement. What do you think of coral calcium plus Vitamin D? Do you know of any reason for a negative reaction even though one might actually need?

I wanted to say that a couple of weeks ago while looking into klebsiella for someone else I found that loquat is very good for that, and then I found that platycodin is good for mycoplasma. There is a tea that comes with both of them, Cough-Off.

I bookmarked your site and have lots of catching up to do. Thank you for our diligence. And thank you Cort for inviting Ken to Health Rising.

 

[Chrysalis Dreaming]

Hi All,
Time for another update.

After adding the bifidobacterium to my probiotics, my stomach has improved tremedously. I have survived the high-sugar Easter eating festival without getting sick on the stomach. But there are still plenty of foods that cause problems. I tried eating some cauliflower last week and I burped for 4 or 5 hours afterwards. Cauliflower is high in FODMAPS, so I believe this indicates that the gut flora is still not great.

I tried sage tea for a week and felt absolutely fantastic for the first 3 days and then crashed badly. Turns out that sage is a stimulant, way stronger than caffeine but without the jitters you get from high caffeine consumption. I don't believe it did anything to my stomach, but it certainly wore out my adrenals.

I've also tried small amounts of the E. Coli Nissle and that has caused lots of burping. I probably haven't taken it for long enough to cause a major difference to my gut flora yet.

One of the things that is slowing me down is my reluctance to face any herx reactions. I have a part time job and am scared of making myself too sick to go to work so I am procrastinating about trying new herbs.

As far as symptoms go, I am still getting very tired and have lots of muscle pain. But my stomach is definitely more settled and there is less IBS symptoms.

 

[Ken Lassesen]

Excellent and thank you for sharing. There have been several additional probiotics discovered for sale, including an E.Coli one that persists for months
See these recent posts
https://cfsremission.wordpress.com/2016/03/27/pictures-of-cfs/
https://cfsremission.wordpress.com/2016/03/19/a-fresh-look-at-process/

Also as a FYI for spanish speakers, there are several people trying it on https://www.facebook.com/groups/VIVIRCON.SFC.EM/ Lala on a 10 point scale went from 0-1 to 5-6 and continues to improve.

Some articles are being translated into spanish at: https://sfcsalud.wordpress.com/ additional translators are wanted. If interested, post on the above facebook group

Ken

 

[Chrysalis Dreaming]

Hi Ken,
Thanks for those links. The second article is timely because I have just come across this video which discusses the need to take sufficient vitamin D and B to create an environment that fosters the growth of normal bacteria.
http://www.cortjohnson.org/forums/media/how-to-fix-your-sleep-dr-stasha-gominak-youtube.521/

This doctor recommends taking a B multivitamin because it includes B5 which she believes is essential for getting the gut bacteria right.

I'm already taking a lot of Vit B but almost certainly do not get enough D. Being fair skinned in Australia means I burn easily and prefer to stay out of the sunlight. I might need to change that habit!

 

[Cort]

He

Hi Ken,
Thanks for those links. The second article is timely because I have just come across this video which discusses the need to take sufficient vitamin D and B to create an environment that fosters the growth of normal bacteria.
http://www.cortjohnson.org/forums/media/how-to-fix-your-sleep-dr-stasha-gominak-youtube.521/

This doctor recommends taking a B multivitamin because it includes B5 which she believes is essential for getting the gut bacteria right.

I'm already taking a lot of Vit B but almost certainly do not get enough D. Being fair skinned in Australia means I burn easily and prefer to stay out of the sunlight. I might need to change that habit![/QUOTES]

So Chrysalis - what the heck is going on? Is the butterfly emerging from its cocoon?