It's all in the Gut. Why we get ME/CFS

[MonkeyMan]

KDM tests your gut in many, many ways and tailors the tests he gives to your medical history. Everything from anaerobic stool tests (which he orders for most--not available in the US as far as I know), to stomach biopsies in some. I must have had about 6 tests that measured some form of gut status, and many of them were complex, so I can't really say that he prescribed one or two tests.

He decides on the tests from years of experience in treating ME/CFS patients and looking at your previous tests, your symptoms etc.

Wish I could be more helpful! You can order the anaerobic stool test from RedLabs in Brussels if you are willing to pay the FedEX--but you would need a doctor who could read it well.

Best wishes,
Sushi

Hi Sushi--

This is really helpful, thank you! I'm going to look into getting the anaerobic stool test from RedLabs.

Your progress against this disease is truly inspirational!

Cheers,
Drew

 

[MonkeyMan]

The last time I took tetracyclines (doxycycline to be specific), I got worse too, rapidly. I think the fact that you've got worse from a particular antibiotic is a good clue, and I think that also strongly indicate that what gives the symptoms is a living microbe, instead of a virus. I think the enterovirus (or perhaps xmrv, or other) is what causes us to not be able to control the gut as we should, so when otherwise harmless "stressors" come, such as acne abx, it might end in total havoc. I think that's because of overgrowth of unwanted microbes. If I were to give you a patient to patient advice, I would say get back to that dentist, and hear if he remembers what abx he/she gave you. Get back on that for a couple of months, and see what happens.

I also think you seem like a good candidate for a fecal transplant, although that's pretty experimental still.

Hi Redo--

Thanks! I'm definitely going to find out what the antibiotic was. If my memory serves me correctly, it was ampicillin, but I'm not 100% sure.

I agree that these symptoms indicate that something bacterial, not viral, is directly causing the symptoms ... unless I'm mistaken, a virus wouldn't devour undigested food particles.

Regarding the fecal transplant, I actually looked into that about 4 months ago... had an email dialogue with Dr Borody and his nurse. They felt that the chances of the transplant "working" were not very good.

Cheers,
Drew

 

[redo]

So, I guess that was after you read the article in NewScientist? Hope your dentist can remember, I think it's best to try something which already has shown effective -- although it's not a cure.

 

[ty98]

Reading this a little late, but I am new here. I have been studing the gut as the source for my CFS for sometime. I have learned alot about autism and from people that I personnaly know. I am to the point that I am convinced the gut is a major contributor. I have worked with anti fungial meds to change the gut enzymes and preplunish with different enzymes. I have also worked on ways to reduce inflamation, first by medication, and then later by dieting. I got good results to a certain point. But then the gut was not always responsive to the treatment and I changed my treatment method. I am now combining the gut treatment with some other treatment and have gotten even better results. I have to see in time how this works out.

 

[liverock]

Here is Dr Myhills take on Gut problems.

http://www.drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS

http://www.drmyhill.co.uk/wiki/Hypochlorhydria

My stomach health and fatigue improved when I started taking Betaine HCL and Aloe vera to improve my stomach acid level as well as Glutamine to help with leaky gut wall. EBV and the Coxsackie viruses thrive when stomach acid is low.

 

[sandralee]

Hi Redo--

Thanks! I'm definitely going to find out what the antibiotic was. If my memory serves me correctly, it was ampicillin, but I'm not 100% sure.

I agree that these symptoms indicate that something bacterial, not viral, is directly causing the symptoms ... unless I'm mistaken, a virus wouldn't devour undigested food particles.

Regarding the fecal transplant, I actually looked into that about 4 months ago... had an email dialogue with Dr Borody and his nurse. They felt that the chances of the transplant "working" were not very good.

Cheers,
Drew

Hi Drew,

I have had 2 fecal transplants with Dr Borody without success. He's a great bloke though

Best wishes,

Sandra

 

[redo]

Thanks for telling about your experiences Sandra. Really appreciated!

I've got some questions if you don't mind.
Did you do the transplant because of CFS, or other co-excisting conditions?
2 transplants, means two days of transplants?
Did you do it the enema route into the large intestines, or the nasogastric tube way?

 

[slayadragon]

This past winter/spring, my body did an intensive detoxification. It was prompted by a variety of things -- a homeopathic remedy, being in a really clean environment, continued methylation support, cholestyramine. (I don't think any of these things individually would have been enough, btw.)

This caused a huge amount of toxin to be released from my body, especially from my brain. This caused a downward pressure on a variety of parts of my body, including the liver (I ended up stopping all my drugs because I couldn't tolerate them any more), the fascia, the adrenals, and the gut.

Shortly after this started, I realized that I had become sensitized to even small amounts of gluten. This was odd, since my gluten reactivity previously seemed to have gone away about eight months after I started mold avoidance.

What I believe happened was that the biotoxins going through my intestines caused permeability to occur. There are lots of articles stating that trichothecenes in foods cause intestinal permeability, and it seems reasonable that satratoxin (a particularly strong trichothecene made by Stachybotrys, the sort of mold I was exposed to) would do the same thing as it was expelled from my system.

Recently I've concluded that the effects of that detox on my intestinal system went way beyond leaky gut though. My gut function (which had seemed pretty good over the past few years, since pursuing avoidance) deteriorated dramatically in all respects.

I started with colonics, which were pretty good at releasing some of the remaining toxic-laden gunk. The colonics therapist recommended a product called Mag07, which also did that.

But my gut function didn't seem to get any better at all, as a result. Maybe it got worse even, assumedly as a result of the good gut bacteria being flushed out.

Finally I decided to make a big effort to address it, starting with a lot of homemade kefir, a really high-dose probiotic powder (500 billion/half teaspoon, made by my doctor), four packages of ThreeLac, aloe, DGL licorice, and (apart from kefir and good yogurt) a caveman diet. Then I added some goldenseal, which always has been a good thing for me.

This has made me totally catatonic, which is the "die-off" response that I get to anything when I'm in a good location. (The inflammatory component seems to present only when I'm in a bad place.) Just utterly exhausted, lifting a finger seems too much. Sleepy. It feels healing, but.....wow.

I still think that getting all that toxin out of my brain etc. was a really good thing. But it definitely did a number on my body, on its way out.

I'm of the increasing belief that various organisms (molds, cyanobacteria, etc.) in the outside environment only make toxins when they are in the proximity of manmade chemicals. Whether it's because the bad kinds grow like crazy then, or because they're somehow encouraged or able to make worse chemicals then, I'm not sure.

I think maybe the same thing happens with the gut though. When toxins of whatever sort (and probably especially biotoxins) go through, things get messed up. Either the good stuff gets killed off, or the bad stuff starts to grow, or whatever's there releases particularly problematic toxins.

It would be nice to know precisely which bacteria were activated as a result of this having happened to me recently. For the time being, I think I'm just going to throw a rotation of herbs at them and see how far I get.

Anybody have any other suggestions? Thanks much for your help.

Best, Lisa

 

[sandralee]

Thanks for telling about your experiences Sandra. Really appreciated!

I've got some questions if you don't mind.
Did you do the transplant because of CFS, or other co-excisting conditions?
2 transplants, means two days of transplants?
Did you do it the enema route into the large intestines, or the nasogastric tube way?

Hi Redo,

I had the fecal transplant for CFS. It was back in 1994 and 1996, and I must admit I'm not sure where Dr Tom Borody stands on this issue in general now. Drew probably knows much more about that. I'll outline the procedures as they were back then, although they've probably changed somewhat, if indeed Dr Borody is still performing them for ME/CFs.

1994:
1) 4 day preparation with oral antibiotics.
2) Day before prep as per colonoscopy.
3) Bowel examination with sedation.
4) Infusion of bacteria into colon.
5) Next day, infusion of more bacteria into rectum - no sedation required.

1996:
1) Same as for 1994, but with nasogastric infusion at the same time as colon infusion.
2) After procedure, 2 weeks of taking oral doses of the infused bacteria in liquid form.

Well I don't have to tell you what the liquid bacteria smelled and tasted like. Ugh!!! I was advised to take it in chocolate milk.

Unfortunately the procedures didn't work for me, but I backed up a second time, to see if the prolonged administration of the bacteria would make a difference. I should add at this point, that Tom was using laboratory synthesised bacteria, and not the human to human fecal transplant.

Apparently in the beginning, Tom did have some success treating ME/CFS people with this procedure, but as we all know, we aren't always talking about people with the same profile.

I'd be very interested to hear from anyone else who has undergone the fecal transplant.

I hope this helps.

Best wishes,

Sandra

 

[redo]

Hi Redo,

I had the fecal transplant for CFS. It was back in 1994 and 1996, and I must admit I'm not sure where Dr Tom Borody stands on this issue in general now. Drew probably knows much more about that. I'll outline the procedures as they were back then, although they've probably changed somewhat, if indeed Dr Borody is still performing them for ME/CFs.

1994:
1) 4 day preparation with oral antibiotics.
2) Day before prep as per colonoscopy.
3) Bowel examination with sedation.
4) Infusion of bacteria into colon.
5) Next day, infusion of more bacteria into rectum - no sedation required.

1996:
1) Same as for 1994, but with nasogastric infusion at the same time as colon infusion.
2) After procedure, 2 weeks of taking oral doses of the infused bacteria in liquid form.

Well I don't have to tell you what the liquid bacteria smelled and tasted like. Ugh!!! I was advised to take it in chocolate milk.

Unfortunately the procedures didn't work for me, but I backed up a second time, to see if the prolonged administration of the bacteria would make a difference. I should add at this point, that Tom was using laboratory synthesised bacteria, and not the human to human fecal transplant.

Apparently in the beginning, Tom did have some success treating ME/CFS people with this procedure, but as we all know, we aren't always talking about people with the same profile.

I'd be very interested to hear from anyone else who has undergone the fecal transplant.

I hope this helps.

Best wishes,

Sandra

Thank you so much for your answers. I am doing my best to give this a go, and knowledge of your experience is very valuable to me.

So, if i get you right; in 1994 you used human to human transplant, enema route. In 1996 you did human to human transplant enema route, but also got synthesized bacteria in a nasogastric tube, as well as drank synthesized bacteria for some two weeks? So, in 1996, the only human to human transplant was the one done as an enema?

 

[sandralee]

Hi Redo,

Sorry for the confusion. I should have used the term bowel flora transplant instead of fecal transplant.

I didn't have any human to human transplant at all in any of the procedures in 1994 or 1996. Tom had stopped doing that at that stage, after developing the synthesised bacteria. We still tended to use the term fecal transplant, even though it wasn't technically correct.

I don't know whether Tom has gone back to the human transplant method or not, but I noticed that Dr Myhill mentions it on her site. Drew might know as he has had recent contact with Dr Borody.

I haven't read all of this thread. Are you considering having the procedure?

Please feel free to ask further questions if anything is unclear, or if there is anything you would like to know from Tom directly, I would be happy to make a call to his clinic.

Best wishes,

Sandra.

 

[redo]

Hi Sandra,

Thanks for a thorough reply! Yes, Tom has gone back to "the real thing". See this article.
I guess you are part of the statistics which made him change back again from synthesized bacteria to "human bacteria".... :Retro smile:

In a 2011 article from NewScientist Borody says the following about treatment of PWCs: "Some CFS patients, given a faecal transplant, will regain their energy quite dramatically, and their foggy brains will get better," says Borody. Link"

Could you post a link to the text on the Myhill site?

 

[redo]

Please feel free to ask further questions if anything is unclear, or if there is anything you would like to know from Tom directly, I would be happy to make a call to his clinic.

Thanks a lot for that! I'll keep that in mind. I just sent you a PM.

 

[sandralee]

Hi Redo,

Thanks for bringing me up to date with Tom borody's work. I had no idea that he'd gone back to his original procedure.

Here's the link on Dr Myhill's site:
http://www.drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS

Best wishes,

Sandra

 

[leela]

Here is another very interesting article about our relationship with bacteria:
http://www.sciencenews.org/view/feature/id/330593/title/Inside_Job
Inside Job
Teams of microbes pull strings in the human body
By Tina Hesman Saey
June 18th, 2011; Vol.179 #13 (p. 26)

 

[redo]

Fibromyalgia and CFS are closely related. They are syndrome diagnoses (unknown cause), they share much of the same symptoms, the biggest difference I see really is just the pain in fibro (which many CFS patients also have). Point is: Studies done on fibromyaliga should interest us...

Here is a study where they checked for small intestinal bacterial overgrowth (SIBO) in fibromyalgia patients.

As you can see, 100% of the FMS patients had SIBO:

There were 42 fibromyalgia patients in the study. The abstract is available here.

 

[mellster]

Thanks Redo, I know Pimentel promotes antibiotic treatment for IBS/SI BO. I never did the lactulose breath test since the wait time was incredible at Stanford, but I am a typical IBS/FM patient with pain as main symptom which causes grave but not severe fatigue as well. Although I am a proponent of the gut theory, I cannot fathom how pain can originate in the gut and then appear in chest and shoulder or even more distant body parts. I think it's rather malabsorption leading to a weak metabolism which promotes general pain.

 

[redo]

Hi Mellster,

The tests can be done at home. Check this video. Genova makes test kits which may be used.

Although I am a proponent of the gut theory, I cannot fathom how pain can originate in the gut and then appear in chest and shoulder or even more distant body parts. I think it's rather malabsorption leading to a weak metabolism which promotes general pain.

Well, take ulcerative colitis as an example. It's a gut disease. It's suspected that it can come from a yet to be identified gut pathogen, although far from confirmed yet. Anyway, point is, it's in the gut, and it can cause: Severe joint paint, muscle ache, pain in the skin. Same with Crohn's. It may be that it [the pathogen] goes via the immune system, and the autoimmunity is what cause the pain (especially the joint pain), it may be that the (gut) pathogen gets translocated to the blood, and causes it in other ways, and it may be in ways like you mentioned. But what we do know is that "gut conditions" such as Crohn's and UC can cause paint in varous parts of the body...

 

[mellster]

Hi Redo,

I might take the test some time - the more mainstream theory though is that SIBO is a 2nd. follow-up symptom as a result of constant inflammation and if the inflammation is treated, the gut can get rid of SIBO evemtually. I am wary of AB treatments, I just found some research showing that UC patients treated with Andrographis had the same success rate as those taking mesalamine. I started taking Andrographis, let's see what comes out. In general my IBS has gotten much better recently, but I still have that general inflammatory feeling in the intestines that I hope to get rid of eventually (no more cramps at this time though).

 

[redo]

That makes sense. The thing about the inflammation. I think that what sets off SIBO in the first place may very well be that. If you have any links on that, than I'd appreciate it.
I am thinking that when someone has the sort of bacteria mix in their SIBO which would cause CFS symptoms, than they need something more than getting the triggering inflammation away to get rid of the bacterial overgrowth (I know, it's just specualtion)