As a person who’s been gifted with being in remission from chronic fatigue syndrome (for the third time), I adhere to a model of what I believe causes typical ME/CFS in hope of staying in remission. The model is stable and consistent with the latest (and older) research studies. It follows William Osler’s principle basing diagnosis and treatment on a strict observation of symptoms (not forgone conclusions and KISS (Keep It Simple Stupid).
“Listen to your patient, he is telling you the diagnosis” – William Osler
Recently, I added another narrative to the model: that the symptoms in ME/CFS are caused by the over production/under clearance of lactic acid. Lactic acid is produced when you exercise and makes you tire as it accumulates.
The Key Study
Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome. [2009] [Full Text]
“Patients with chronic fatigue syndrome (CFS) are affected by symptoms of cognitive dysfunction and neurological impairment, the cause of which has yet to be elucidated. However, these symptoms are strikingly similar to those of patients presented with D-lactic acidosis... this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications.”
“Faecal microbial flora of CFS patients and control subjects. The mean viable count of the total aerobic microbial flora for the CFS group (1.93×108 cfu/g) was significantly higher than the control group (1.09×108 cfu/g) (p<0.001). There was a significant predominance of Gram positive aerobic organisms in the faecal microbial flora of CFS patients. …This study confirms the previous observation (22), and those reported by other investigators (23) that there was a marked alteration of faecal microbial flora in a sub-group of CFS patients….. In this study the mean total count for Enterococcus and Streptococcus spp. for the CFS group was 52% of the total aerobic intestinal flora, which is significantly higher than the 12% seen in the control subjects (p<0.01). ”
“In this study the NMR-based metabolic profiles of the three intestinal micro-organisms, E. faecalis., S. sanguinis. and E. coli showed that the Gram positive bacteria (Enterococcus and Streptococcus spp.) produce more lactic acid than the Gram negative E. coli. Not surprisingly, these Gram positive bacteria were shown to lower the ambient pH of their environment in vitro as compared to that of E. coli. This suggests that when Enterococcus and Streptococcus spp. colonization in the intestinal tract is increased, the heightened intestinal permeability caused by increased lactic acid production may facilitate higher absorption of D-lactic acid into the bloodstream, henceforth perpetuating the symptoms of D-lactic acidosis. Increased intestinal permeability is also associated with endotoxin release from Gram negative enterobacteria, leading to inflammation, immune activation and oxidative stress, which are cardinal features in a large subset of CFS patients “
Ken believes bad stomach bacteria could be contributing to ME/CFS/FM
My model’s core element has been that CFS/FM/IBS are caused by microbiome dysfunction. This has been reported multiple times in the literature by Butt [1998] and Schloeffel [2001], and preliminary results from the Lipkin/Hornig microbiome study suggest major alterations in gut flora occur. Anecdotal reports indicated that fecal transplants can result in immediate remission in a significant set of ME/CFS patients. (Unfortunately, many did not stay in remission beyond six months).
A major decrease of E.Coli in CFS patients is well established. If there are less E.Coli, then other bacteria which produce more lactic acid per unit of bacteria can take it’s place.
This lactic acid/chronic fatigue concept is not new, and has been reported in the literature before:
- Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case-control study.[2012]
- “CFS simulations exhibited an increased acidosis and lactate accumulation consistent with experimental observations.” [2015]
- Is chronic fatigue syndrome synonymous with effort syndrome? [1990]
However the lactic acid findings may have been viewed as a consequence and not a cause. The opposite may be more accurate.
The Treatment
Using the term “lactic acidosis”, I checked for recommended treatments on the large research citation database, PubMed as well as EMedicine, and the popular website, WebMD. The news – that there is no known effective treatment for lactic acidosis – was not unexpected. (I did find a study that regular probiotics can cause it. Ouch! This is consistent with some conference reports, though, where a some ME/CFS MD’s have stated “I have seen no improvement from patients taking probiotics”).
“Probiotics Provoked D-lactic Acidosis in Short Bowel Syndrome: Case Report and Literature Review” [2006]
A successful treatment is described in this PubMed article [2013]; unfortunately the probiotics described are not available in the US and the high dosages of antibiotics suggested are unlikely to be acceptable to MD’s working with ME/CFS patients.
The antibiotics proposed bear a strong similarity to the protocols advocated by Cecile Jadin, MD and Phillipe Bottero, MD; both of which report over 70% remission rates. The treatment they used for lactic-acidosis was:
“The patient received kanamycin (Kanamycin Capsules, Meiji Seika Pharma, Tokyo, Japan) 1000 mg/d. … metronidazole (Flagyl, Shionogi & Co, Ltd, Osaka, Japan) 500 mg/d and kanamycin 2000 mg/d were administered for 5 days under fasting conditions. Polymyxin B (Polymyxin B Sulfate, Pfizer Japan Inc, Tokyo, Japan) 500 3 103 U/ d and vancomycin (Vancomycin Hydrochloride Powder, Lilly, Kobe, Japan) 1000 mg/d were administered over the subsequent 5 days. After the use of antibiotics, a purgative (Niflec, Ajinomoto Pharmaceuticals Co, Ltd, Tokyo, Japan) was used…..Overgrowth suppression was approached by starting synbiotics, specifically B breve Yakult (prepared by Yakult Co, Ltd, Tokyo, Japan) 3.0 g/d and L casei Shirota (Biolactis Powder, Yakult Co, Ltd, Tokyo, Japan) 3.0 g/d as probiotics, and galactooligosaccharide 8.4 g/d as a prebiotic.” [2013]
A better understanding of lactic-acidosis can be obtained here [2015].
- “Type A lactic acidosis—due to hypoperfusion and hypoxia—occurs when there is a mismatch between oxygen delivery and consumption, with resultant anaerobic glycolysis.”
What to do?
After I posted the above information on my blog, a reader asked
“Hi Ken. How would you recommend proceeding if I can’t find a doctor willing to prescribe the Jadin Protocol or anything close to it. Do you think healing is possible with only OTC supplements and herbs? If so, where and how should I start. This is a lot of info to dissect and interpret and my brain fog is at all time crippling levels.”
Herbs can have a powerful effect on the gut flora
My answer was “very probable” and the reason is simple: herbs, spices and probiotics have anti-viral, anti-fungal and antibiotics characteristics. In a few cases, they have found to be more effective against some species of bacteria than the strongest prescription antibiotics . The problem is identifying the best candidates to take. For example, you do not want to kill off E.Coli (which would make room for more lactic acid producing bacteria). Instead, you want to reduce the lactic acid producing bacteria.
In response to this comment, I did a series of posts looking at how to correct the gut bacteria dysfunction. Things I tried after finding research supporting them on PubMed and which appeared to work for me, or for others I know that have tried are included below. The different possible treatments are linked to blog posts for those who are interested.
| Diet and Food | A permanent change of eating habits | ||
| Spices and Herbs | Typically 2 weeks at high dosages and then rotate to other one | ||
| Cognitive Enhancements | Reducing cognitive impairments | ||
| Biofilm Breakers and Potenators | Getting the antibiotic herbs to the bacteria | ||
| Probiotics | Probiotics found effective for IBS in clinical trials, non/low lactic acid producing probiotics | ||
| An Example Regime |
Why is There Not a “Canned” Recipe?
The reason is simple, each person’s complement of gut bacteria is unique, more unique actually than their DNA (and more complex too!). When the gut flora goes bad, the mixture of bacteria strains found differs from person to person.
It’s possible that the heterogeneity in gut flora may contribute to the complex symptom picture found in ME/CFS. The lack of consistency in symptoms across ME/CFS drives drive researchers and MD’s mad! The microbiome model (gut bacteria), suggests this symptom heterogeneity is to be expected, however. It suggests we are not dealing with a single bacteria, but a shift of the entire population involving thousands, perhaps millions of strains.
A Ted Talks Gut Flora Overview
Using the herbs suggested above I would expect one person to improve cognitively from Tulsi with no Herx while another might herx from a half cup of Tulsi tea. Tulsi kills off many species of bacteria. Some will produce toxins that will result in a herx, others will die quietly.
Treating the gut flora is an art which requires systematically trying good candidate herbs and probiotics for a reasonable length of time and seeing if they cause change. If they cause a change, then they should be tried again — later – we want to keep rotating the antibiotic herbs and spices to prevent resistance from building up.
Check out more of Ken’s gut blogs here
Fascinating! Thank you so much for this article! Health of the gut is of utmost importance for all areas of health, but, for some reason, antibiotics are still sacred cows that no one is willing to criticize. Perhaps we could chip away at that a little by noting that there are some antibiotics that are particularly damaging to the microbiome, and that also damage mitochondria. Fluoroquinolone antibiotics – cipro, levaquin, avelox, floxin and their generic equivalents – are like nuclear bombs to the gut, they also lead to mitochondrial DNA depletion and mitochondrial destruction, increase levels of oxidative stress, and symptoms of fluoroquinolone toxicity are often similar to symptoms of ME/CFS and fibromyalgia. Here is a post that links to articles that note that the fenton reaction is triggered by fluoroquinolones in gut bacteria – http://floxiehope.com/2014/11/10/fluoroquinolone-induced-gene-upregulation-and-ros/. There are other articles about fluoroquinolone toxicity, and the extremely deleterious effects of fluoroquinolones on cells, on that site – floxiehope.com.
Wow Lisa, thanks for this info. I was once prescribed Levaquil and i guess I owe some thanks to Walgreens because when the gave me the six pages of warnings I declined to take it….but this information is new to me. I will be very careful……
Hi Lisa,
not only antibiotics, which can select for different forms of Bacterial Overgrowth including D-Lactic acidosis, but there are many other medications that can contribute; and Fluoride in water can also cause Gut Dysbiosis!; we are exposed daily to low level antibiotics that come from overuse in farming, things like early weening of Pigs and caged poultry etc., but it may not be only antibiotics that can affect Gut health, I expect that everyone is aware of the effects of Fluoride and other over the counter acid lowering drugs that allow for overgrowth. The problems may be caused by many contributing factors. I have included a more recent study on Fluoride inducing Fungal dysbiosis. Candida alone is able to produce D-Lactic acid.
The Organic acid for me is a prime candidate for Neurological symptoms of ME.
2020 Apr;245:125617. doi: 10.1016/j.chemosphere.2019.125617. Epub 2019 Dec 10.
Intestinal fungal dysbiosis in mice induced by Fluoride.
Cao Q1, Li R1, Fu R1, Zhang X1, Yue B1, Wang J1, Sun Z2, Niu R3.
Author information
Abstract
To explore the effects of fluoride on intestinal fungi in mice, the internal transcriptional spacer (ITS) region in colon feces of mice exposed to 100 mg sodium fluoride (NaF)/L of distilled water for 60 days were sequenced. Results showed that, there were 305 operational taxonomic units (OTUs) unique to the control group, 154 OTUs to the fluoride group, and 295 OTUs were detected in both groups. There was no significant difference in relative species abundance between the two groups at phylum levels. Compared with control group, Ustilaginomycetes class, showed a significant change in fluoride group. At the genus level, Epicoccum, Penicillium, Microdochium, Plectosphaerella and Pluteus were significantly affected by fluoride exposure. Among them, there was a strong positive correlation between Penicillium and Pluteus (+0.43). Therefore, it showed that fluoride can influence the relative species abundance of intestinal fungi in mice, mainly at the genus levels. It can provide some new ideas about the harmful effects of fluorosis on intestinal fungal homeostasis.
Copyright © 2019 Elsevier Ltd. All rights reserved.
KEYWORDS:
Feces; Fluoride; ITS; Intestinal fungi; Sequencing
I nuked my skin flora, oral flora and gut floa now I’m dying!!!!
The Aerobic Energy Production and the Lactic Acid Excretion are both Impeded in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
http://sciforschenonline.org/journals/neurology/JNNB-1-112.php
This is all so fascinating and very pertinent to me. I took antibiotics for over 10 years for acne, starting at age 13, and then suddenly developed septicemia with an E coli bacteria ( E coli got into my blood stream). This is very serious and to treat it I required another antibiotic. I have never been the same since.
I am sure the antibiotics wreaked havoc on my gut flora and were one of, if not the cause of the development of my ME/CFS.
I can’t wait until more is discovered about all of this.
Hi Claire,
Antibiotics for acne were what caused my ME/CFS too.
Have you considered trying fecal transplant to restore your gut flora? The Taymount Clinic in the UK offers it. Expensive but worth considering.
How expensive? And where in the UK? I might like to try that. Will they treat non-British?
Kate, it’s around $7000 for the whole treatment. They’re in a town called Hitchin and they will treat anyone who is willing to commit to 2 weeks of treatment.
Thanks Drew! Do you have a website or contact information?
Never mind! I found it. Taymount Clinic Gut flora experts 🙂 Thank you.
Not sure about the lactic acidosis but changing the gut flora seems likely to be important. Although everyone talks about probiotics it may be easier to do with prebiotics. Bimmuno has worked better for me than probiotics, not sure if that is available outside the UK.
Potato starch is a cheaper pre-biotic alternative.
One of the points that I attempted to make is that the evidence for regular, typically available probiotics are likely either ineffectual and may be harmful.
In general, avoid probiotics with any lactobacillus species included.
I’m going for fecal transplants in UK. Do you have any suggestions on how I may maintain the new microbiome I’m hoping to infuse? I have methylation issues & am working with a Dr to address those. My gut tests show low variety of flora. I have MTHFR & other mutations. Am diligent with diet. Take probiotics every day. Do you recommend any probiotics that you can get in UK? Thanks!!!
Please keep us (or me) informed on how you do on the fecal transplant. From correspondence with an Australian CFS who has had multiple, if the first one fails, then latter transplants are often done with antibiotics first. If possible, I am inclined to suggest minocycline for weeks before — it is the most common one used across antibiotic regimes from different MDs, it is also the smallest in size (thus can cross the blood-brain barrier easier).
Second is a hard look at your diet. I start every morning with a slice of 100% rye bread (made/baked in Germany) and keep wheat intake low. Sugar very low. etc (see my post on diet)
Mutaflor should be available, either directly or by begging friends traveling to Germany to bring some back (it’s over the counter there). Check Amazon.co.uk, while Amazon has some “evil” to it, it has empowered us to get unusual stuff with a lot less hassle. There are some interesting probiotics that are being commercialized in Spain that I have been following. Again, it may be persuading friend to being back some. I have added a note to create a blog on probiotics that appears to be available in the UK to my to do list.
Tulsi and Neem are the two herbs that are available as teas (and which I have had positive results from capsules) — and thus adding regular cups of them to your regular diet may assist in keeping the transplant healthy.
HI Ken,
What is Mutaflor? Is it available in the U.S?
Thanks,
Kate
Hi,
I suggest you read Ken’s other posts on this website as well as his website cfsremission.com
Here he discusses at length Mutaflor and where you can get it in the US. The canadian company did ship it to me in Miami.
https://cfsremission.wordpress.com/2014/04/16/my-favorite-probiotic-e-coli-nissle-1917-mutaflor/
Thank you, Chris. And did you recently comment on reaction to Minocycline? I was going to tell you that I ‘ve been on it about 2 weeks and had a similar reaction the first week. Better this week so I am attributing that to a herx.
Regards,
Katherine
Hi
I’m in the UK and have been reading recently on fecal transplants. Could you kindly let me know who you are doing this with? Much appreciated.
Hi Karin, the place to go is the Taymount Clinic, in Hitchin. They are extremely professional and helpful. I had FMT there in July, and while I’m not sure how much it has helped me, I’m extremely glad I took that step.
How many days of treatment and can you describe you experiences good and bad in more detail as well as the state of your health before and after.
10 days of treatment. It’s too early for me to judge whether it’s had a significant impact or not on my health.
Hi Drew,
Have they given you any indication of when you should expect to see results or improvement?
Thanks,
Kate
Hi Kate, some people see results immediately, some see results weeks or months later, and some never see improvement.
Hi Ken,
From my standpoint your blog is perfect timing. I just sent a comment to you on CFSremission. This blog couldn’t come at a better time as I was struggling with the effects of minocycline which you recommended in your original posts. I have started your protocol about three weeks ago and started with NEEM which I had no problem with. However the day after I took my first round of minocycline I felt like I was run over by a truck my already limited functionality decreased by 50%. I continued for a full week and it was one of the hardest weeks of my last three years and I’ve had a lot of hard weeks during that time. I’m currently on the L Reuteri phase and I’m planning to move to Tulsi next. Lactic acid was always a problem back when I was a healthy version of a CFS victim. I was wondering how many people you know who have successfully recovered from using these protocols. Also I’m very curious why the people who had the FMT recovered for only six months what could’ve been done to keep them from relapsing.
I would also like to know your experiences with the art of identifying what was working for you and what was not working for you for example how could you tell that probiotic or one antibiotic was helping.
Thanks I look forward to joining you in remission
Hi Ken,
Yes I agree with this request, please. It is hard for me to know for example whether the minocycline I am currently taking is not working or if I am herxing because it is working. Same with the LDN i take. How can one tell, generally speaking, if feeling bad/worse is due to herx or due to getting sicker?
Thanks,
Kate
It makes perfect sense that my FM has improved greatly by eating minimal carbs (Atkins diet) and by strictly paced exercise – aerobic/fat burning intensity only.
But this is not a “cure”, it is just “a way of coping with the dysfunction in the system”.
I don’t yet know whether several years of this, may allow my body to wind back the damage so that I am cured, it is an attractive hypothesis but I am not counting on it. I guess it is important what are the causes and what are the effects. If I manage to minimise my production of lactic acid for years, will things like gut permeability gradually heal?
And does minimizing sugar intake, benefit “good” bacteria and starve out the bad? I do not know; but Dr Bruce Duncan always argued that Candida and Guardia and other bad gut organisms thrive on sugar intake, hence he insisted on his patients going off sugar and refined carbs. He would be fascinated if he was still alive, with the discussions we are having now.
I just started using bicarbonate of soda and beta alanine to clear lactate and acidity because I suspect EBV activates the Warburg effect in the mitochondria. There is some limited data supporting this, but also, after I exercise, I just can’t recover. So it makes sense. Plus, when I tried a lactate supplement (Sportlegs) I could hardly get out of bed.
hi Mi I, how is that working for you? I’d like to hear more. Thanks!
hi Mmi I, how is that working for you? I’d like to hear more. Thanks!
http://www.nytimes.com/1989/08/22/science/doubts-raised-about-a-heart-attack-treatment.html
Here is a New York Times article on soda. Be very careful. Can imbalance tour potassium levels too.
Issie
http://drsircus.com/medicine/sodium-bicarbonate-baking-soda/side-effects-contraindications
This has some more precautions.
Reason I looked these up, I had an Emergency room nurse warn me against this when I was using it with a med that caused acidosis. It was a hypothesis of another person with POTS to try a med that also required baking soda to keep the acid down. I think this may have contributed to my Chronic Kidney Disease. I got severe edema and things went from bad to REALLY bad. The nurse said that in an emergency situation they may administer it, but with extreme caution and with counteracting in place.
Using for a few times of reflux may not be an issue, but for prolonged use – caution should be used.
Issie
Thanks for the warning.
How interesting. Many of the things he suggest, I do – and feel they have been key to my improvement. Many of the suggested herbs are used for protozoa and do cause some very unpleasant herx reactions. My doc has me on a new antibiotic and it is really causing some pretty severe herxing. I’m about ready to take a break from them and do interval probiotics. Cytokines response to die off is quite uncomfortable and pain that causes – I’m ready for a break from. Pulsing treament is common -Lyme morphs into other forms and in order to hit all forms, you need to do it with different herbs at various stages. A big juggling act. Protomyzoa Rehumatica is a whole other beast and very difficult to manage when the immune system isn’t recognizing it.
Also a note as to biofilm – lumberkinanse is the strongest of the ones he uses to break them down. This needs to be done at least two hours or more before antibiotic or herbs so that they can get through the biofilm to get to the bacteria, virus or protozoa. Timing on when to take what is important.
Really enjoyed the links and glad he is recovering from yet another flare. It’s something that may be a lifelong balancing act. I’m just glad that we can have some mostly good times when we come out of those flares. I’m looking forward to coming out of the one I’m in right now.
Issie
Hi Issie,
I’m sorry, easily confused by my brain fog. Who is the “he” you are referring to? Ken?
Thanks,
Kate
Dr. Stephen Fry in Scottsdale, AZ – is bioscientist/physician who discovered Protomyzoa Rehumatica. He is my primary doctor now and is who has helped me with the antibiotics and antimalarial things. I use a lot of alternative supplements. Have to be on really good probiotics with these things. Still having some pretty severe herxing but look at it as a positive. Had to slow it down though – spaced out antibiotics to every third day now. Still on herbals though. This change of antibiotic has caused much more herxing than the doxycycoline that I was on before.
Issie
Well the herd means it’s working so from that angle it’s what you want. Hang in there.
Very intersting. Acidoses could explain many of our symptoms if not all. But in don’t understand that we have more gram positive bacteria, i Always thought it was the other way around more gram negative bacteria. It is very complicated. I use Yakult Lactobacillus casei and feel much better. It is a lactade producing bacteria…. So it doesn’t make sense than does it?
Gijs, We need some lactic acid producers — the problem is over producers. While Yakult Lactobacillus casei produces lactic acid (as does E.Coli), the amount per volume of bacteria is much lower than other species. For Yakult, the antibiotics/organic acids that it produces appear to inhibit the growth of many species that are high lactic acid producers.
Thx for your reply. Very complicated this stuf… But Yakult make sense then. I keep using it because it helps a lot.
But isn’t Yakult full of sugar?
This is what I’ve never understood about most of these little yogurt pro-biotic drinks – and I think the reason they all make me feel so queasy. Everyone bangs on about how bad sugar is for the bad organisms, yet the Yakult type probiotics are sold with a mountain of sugar mixed in.
Can somebody explain this? Or am I confused?
You are correct that it is with sugar. It appears to be also available in Japan as a pure probiotic. In this case, the sugar helps to keep the Yakult feed and reproducing. Regardless, the studies of it (with the sugar) are very positive and I know multiple people who had quick change of some symptoms after taking it.
Hi Ken,
Is this Yakult a brand name then? It is a dairy product?
Thanks,
Kate
Ken,
Thank you SO much for clearing that up – I’ve been winding myself up ever since I first saw those little bottles about 20 years ago in France (I think). They seemed to make me feel better but I was convinced that with all that sugar that couldn’t be the case and it must be yet another marketing ploy. But the sugar actually helps! That’s great – I’m off to my some!
(To Kate – yes, they’re little beige colored bottles of yogurty stuff, sold in the dairy section of the supermarket mostly in packs of ten or twelve. I’m guessing though that the others may have actually been talking about the pure probiotic that Ken mentions which sells in Japan. But they do also make the ‘danone’ type which is a pretty pleasant drink. But quite sweet!)
This is not an optimistic study for an already sugar-loaded product IMO.
Maybe I just don’t want to give up my free lactobacillus!-loaded probiotics.
http://www.express.co.uk/life-style/health/509785/Brits-are-wasting-millions-of-pounds-of-probiotic-drinks
Cort, why don’t doctors measure the pH in the bloodstream? It also explains why we have hyperventilation. Professor Newton did found 20 times more acid in the muscle cell in CFS patiënts after electric stimulation of the cell, how do we explain that?
My wife and I both have CFS. We found this article interesting because we did have positive results with Xifaxin in short periods, but it is too expensive for us to use all the time. We have found Kefir to be extremely helpful, much more than probiotics (which never helped but added to our problems). We are starting to learn, however, that too much kefir can turn against us. We exercise nearly every day but have to keep it to a minimum because too much will bite us as well (we fast walk 25 minutes and wife does yoga. That’s our extreme limit.) We are very careful with our diet — chicken, fish, fresh veggies, no sugar, no processed foods, limited red wine and plenty of acupuncture every two weeks.
I took the remaining Xifaxin I have left and broke it up into many smaller pieces and take a small piece once in a while and I found that helpful, too. I think, in conjunction with the kefir, if I could take a small piece of Xifaxin daily (maintenance dose), it would be helpful. Hope this helps (roncostello@mail.com)
Hi Ron. If Xifaxin helps so much it could be very likely that you have Small Intestinal Bowel Overgrowth. There are a couple of supplements that have been proven as effective as Xifaxin in studies. They aren’t exactly cheap either, but should be much less than Xifaxin. You can also take the ingredients individually or make your own capsules from bulk for the cheapest option.
Xifaxin was a short term miracle worker for me. It’s practically the only thing that has ever cleared my debilitating brain fog. Unfortunately it only worked the first two rounds. I have had some decent results with the supplements above, though I’m waiting for SIBO test results for an official diagnosis.
http://www.siboinfo.com/herbal-antibiotics.html
Xifaxin or Rifaximin are antibiotics. Single antibiotics tend to clear the majority of the bacteria, but some are often resistant to it. You clear 95% of them the first time, 90%, the second time and 30% the third time. Two lifting of brain fog and one thick fog.
Eventually the resistant ones dominant and the antibiotics become ineffectual. This is why I advocate rotation over many antibiotics (which include herbs that are antibiotics). There was a recent article on a mathematical simulation of an infection and the time to eradication was less and probability of eradication was higher with rotation over single antibiotics (even with mega dosages).
Ken, thank you for that information. Can you tell me what supplements are as good as Xifaxan and should they be rotated? You are correct, I do believe I have small intestinal bacterial overgrowth. I also have candida too.
Ron
Alas, I do not recall seeing a single study of herbs effectiveness again Xifaxin; most of these studies has been against sets of bacterias comparing various traditional medicine herbs against commonly prescribed antibiotics.
Examples:
http://www.ncbi.nlm.nih.gov/pubmed/10661885
http://www.ncbi.nlm.nih.gov/pubmed/24177353
Ken –
Here is the one I read. I actually found it on the Phoenix Rising singe, not this one – I’m on them both so much that I confuse them!
Herbal therapy is equivalent to rifaximin for the treatment of small intestinal bacterial overgrowth
http://www.ncbi.nlm.nih.gov/pubmed/24891990
Visit siboinfo.org
Ron –
Also try the two different supplement combinations, one by Metagenics (Candibactin AR and BR) and the other by Biotics (FC Cidal and one other), that were shown in a recent study to outperform xifaxan (sorry – I don’t have a link, but it was written about on this site so should be easy to find) amongst people experiencing SIBO.
I tried the Metagenics combination for a month and felt actually really pretty good. I also tried a whole lot of other things that months too though, foolishly. They are expensive, but it’s about $60 for the two for a month, which really is pennies compared to the exorbitant price of xifaxan.
http://Www.siboinfo.com
I have said for years that my CFS/ME symptoms are linked to my stomach problems, but doctors don’t listen.
I have a lot of pain caused by fibromyalgia. Also IBS and acid reflux which has caused me major problems for years.
Definitely linked in my opinion.
There is a lot of anecdotal and clinical evidence that LDN helps with pain in these illnesses.
Low-dose naltrexone may help with symptoms; my focus is on the model that causes this condition, and from a robust model (strongly consistent with all of the findings), determine the compass headings that are likely to help with full remission.
Naltrexone may help with the microbiome/gut bacteria shift — alas there is only a single applicable citation on pubmed
“An opioid growth factor (OGF), [Met5]-enkephalin, interacts with the zeta (zeta) opioid receptor to modulate development of eukaryotes. We have found that [Met5]-enkephalin, an endogenous opioid peptide serves to inhibit the growth of S. aureus. ” 1992 http://www.ncbi.nlm.nih.gov/pubmed/1313136
My understanding is that the LDN sort of reboots the immune system via the opioid receptors on the immune cells. I definitely know when I am taking LDN versus when I am not – I herx. And that is on a very low dose of 1 mg, not the standard low dose of 4.5 mg.
Kate, what is Naltrexone and LDN and why do you take it? Are they herbs?
Thanks
Ron
Naltrexone and LDN (Low dosage Naltrexone), see https://en.wikipedia.org/wiki/Naltrexone
It is a prescription drug
Ron, I take it because research shows it has great promise of actually curing or at least Lon term remission – it works by helping your own immune system function properly, so if your illness has infection at the root of it, or cancer, or autoimmunity, this drug helps your own body correct itself.
Jury still out on me.
Good luck Kate!
It definitely helped my pain. BUT…….I’ve tried it 3 different times and each time it threw me into a horrible depression. I understand from talking to some others – I’m not alone in this. It can have some non-tolerable side effects. I don’t plan to try it for the 4th time. 3 strikes and your OUT.
Issie
I think this is huge.
I’ve been looking at ways to alter pH in order to test whether it reduces PEM. I found that taking baking soda was actually incredibly effective. Unfortunately it has the side effect of neutralizing your stomach acid. You can read about my experience here:
http://www.mendus.org/joshuas-blog/my-89-cent-recovery
Since posting that I’ve been absorbed in finding alternatives and will launch a study, probably within a week, which anyone can participate in from their own home. In a nutshell, paradoxically, insufficient stomach acid can lead to an overly acidic system and likely imbalances in intestinal microflora. The combination of improper digestion and altered microflora could wreak havoc on pretty much any bodily system. Making sure there is sufficient stomach acid, along with a good diet, can dramatically alter pH. In time a great many things may simply correct themselves. That’s the hope anway.
I’ll post here again when the study is ready.
Joshua
A logical approach and I have seen in tried many times in the last 16 years with symptom release for some only. Definition of “good diet” can be misleading — is it a diet that hundreds of years of ancestors ate that you bacteria adapted to — or is it a diet that is being advocated based on philosophy without any solid scientific studies? In Japan, for some digestive diseases, putting the patients on a strict traditional diet (instead of previous western healthy diet menu) resulted in a higher rate of patients staying in remission.
Yes, studies indicate that some will go into remission “in time”, most will not without significant intervention.
Thanks for the reply Ken. Would you be able to direct me to the studies you’re referring to that have manipulated stomach acid and/or diet? I haven’t been able to find much.
By ‘good diet’ I meant generally cutting down on crap like refined sugar and increasing things like vegetables. I wasn’t thinking a particular diet. I’ll actually be asking people to track their current dietary habits prior to trying to increase stomach acid in order to see if particular diets are more amenable to change.
Ciao
Drinking lemon in water may be a safer and tastier option. I fund I need lemon daily. It is also very good for the liver. Here’s a blog I thought was interesting with references to his point. Lemon also helps lactic acid build up.
http://liveenergized.com/alkaline-diet-resources/lemon-water-alkalising-superstar/
Issie
Lemon does reduce some bacteria, for example, Streptococcus sobrinus (http://www.ncbi.nlm.nih.gov/pubmed/23328100) and it is recognized as an antibacterial because of its low pH of juice. The key question is what level is needed daily to alter CFS stomach – a cup of undiluted, a quart, a gallon?
My concern is that it may be too wide in its killing action, so while you get relief — you may not be able to re-establish a healthy microbiome.
I think you have to pay attention to your body and how you feel. I use one to two whole lemons a day. So far, so good. I dilute and make lemonade with stevia. It’s not a complete “cure”, but I can tell a difference when I skip a day or two. It helps the liver to detox too. If we can keep the liver functioning optimally we will be ahead of the game when we create those herx reactions.
Turmeric and ginger has been a huge help with the pains that a herx will cause. I use organic spice and make a tea with them. Good with clove in there and a little cinnamon. Some stevia to sweeten. Yum, relaxing and helps pain.
Issie
Be very careful using Stevia, it appears to kill some of the bacteria that CFS are low in (making a bad situation worst), see
https://cfsremission.wordpress.com/2015/04/04/stevia-inhibits-the-l-reuteri-and-should-be-avoided/
Thanks, I did not know that. I have had a question mark in my mind about stevia and my response to it. May be something to leave off and see if it makes a difference.
Issie
http://suppversity.blogspot.com/2014/11/stevia-kills-good-gut-bacteria-one.html?m=1
I found an article analyzing the article on stevia and it concludes there is a “slight” change of that one beneficial bacteria. But the benefit it has with other things seems to out weigh that concern.
I think in moderation it may be a better option than sugar. I’m not wanting to go back to sugar. Too many research articles showing it’s affect on the body and that’s not acceptable option to me. Sugar may imbalance the gut flora even worse.
Issie
Thanks Joshua. I’d like to participate when you get that set up.
Katherine
Hi,
I would suggest you look into the PH miracle (book) and try the diet recommended there along with the Baking Soda as you are trying to create an alkaline environment which could help change your gut flora.
“could” is the key word. In watching trends for CFS treatment over the last 15 years, the pH proposal has come up many times with only moderation of symptoms happening, not remission.
Really super article and made so much sense to me. I’ve recently been taking C1 Custom Probiotics Acidophilus& Bifidus but now I’m a little worried it’s not what I should be taking after reading this. My brain fog is dreadful and I know I can’t read it all again just now, could you advise ? Also taking organic apple cider vinegar, again, now I’m uncertain, would this upset the Ph balance and flora in a negative way regarding the lactic acid ? Thank again for great information.
Hi Karin, I think the apple cider vinegar works like lemon juice – while it is an acid it acts to alkalinize the body. Make sure you are using raw apple cider vinegar, like Braggs, with the mother in it. I think it actually tastes very refreshing. And be careful about your tooth enamel. If you mix the vinegar in water and sip on it that is worse for your teeth than swallowing a spoonful all at once. Might want to Use a straw. Either way, follow your vinegar consumption with clear water and rinse your mouth thoroughly.
One word of warning: lemon juice and vinegar are known histamine liberators or high in histamines. If the bacteria shift is heavy towards histamine producers, some people will have a “wild time”. There appears to be a subset of CFS patients that are histamine saturated — so use care.
* Vinegar has a pH around 2.4, Lemon juice 2.0
see http://www.sciencebuddies.org/science-fair-projects/project_ideas/Chem_AcidsBasespHScale.shtml
I seem to be okay with lemon. Have been trying grapefruit/pomelo juice and seem okay. But orange isn’t so good. I do have MCAS (mast cell activation syndrone).
Have you experimented with grapefruitseed extract? Another one to try. I have to space out and go really low. Causes pretty bad herx for me.
I have to reserve vinegar for sore throats, as it will for sure upset my digestive system. FYI, apple cider vinegar will supposedly kill strep within 24 hours. I cured strep throat without antibiotics with it one time while on vacation. Severely sore throat with high fever and all was better within 3 days.
Issie
Can anybody point me to specific research or scientific explanation as to why this should be true? Every naturopath I meet tells me the same thing – that lemons and apple cider vinegar, although acids, make the body more alkaline. I just can’t get my head around it. Acetic acid (vinegar) is made by fermenting ethanol alcohol. I believe. Lemons are citric acid, which is commonly used as a preservative. And commonly companied about by naturopaths.
So how can these two seemingly random acids suddenly have an alkalinizing effect on the body? It’s an honest question – I’m not naysaying, but it seems rather curious, and somewhat useful as an explanation as to why acidity is always the bad guy in alternative medicine and yet these two get a pass.
Anyone?
http://www.budwigcenter.com/the-amazing-health-benefits-of-raw-lemon-juice/#.Vh8g1oHn_qA
This isn’t a scientific article but one from a cancer clinic telling people how to use it.
The info I could find with “Google”, is its how your body breaks it down, like the separation of the salts and minerals. It somehow becomes alkaline when metabolized, but is acidic until that happens. I would like to see a research paper on it too. But, I could only find one UTUBE video of a doc explaining it. Didn’t see the science though. Plenty of articles written about it though.
Issie
Yikes Issie –
The cancer site is super enthusiastic but a touch over the top! Stronger hair and less insomnia?Oh! I wish! I have about 35 strands.. 🙁 (Please don’t think I’m not grateful that you looked it up for me though! I am very grateful. and very much of the opinion that we are all in this together and that every person’s view and experience must be examined as it may help one of us. Anyway – I applaud their enthusiasm!)
The alkaline tide, even if I could understand it, doesn’t mention lemons in particular or ACV. I’m sure it actually explains a lot, but it’s 9am PST and I don’t even function until about 11am these days.
I tried the lemon juice and warm water thing for about a year, after an ‘acid specialist’ at a health farm in Palm Springs looked at a sample of my blood under a microscope (for $150) and showed me some circular blobs and some not perfectly circular ones. She said the ones that looked like space-ships were evidence that my blood was turning acidic, and that I needed to drink lemon juice every day and buy all of her expensive ‘vitamins’ or I would get very very sick in the next couple of years. She managed to scare the bejeezus out of me. (In my defense, I’d had three colonics and no solid food for four days)
I didn’t buy her vitamins, and I don’t remember her reasoning as to how lemon juice was an acid but had an alkaline effect on the body, (this, again, was her main selling point) but I did try her lemon juice thing every morning and evening and pretty much all through the day. I didn’t feel any different. No better, but no worse either.
The funny thing is – I DID get very sick. I came down with fibromyalgia about 2 years later! I’m trying very hard to believe it was a co-incidence.
There is a Ying/Yang between stomach pH and blood pH. But the changes are very small in the blood.
See https://en.wikipedia.org/wiki/Alkaline_tide
I just happens to come across this on FB. I’ve been sick since 2007. Slow decline after my hysterectomy. Horrible fatigue and muscle wasting. I’ve always said it my gut, but can’t find anyone to look into this. Any guidance would be greatly appreciated.
Many CFS patients have done testing via uBiome.com to find more information about what they actually have and the shifts. While it gives information, most MDs and alternative health specialists do not know what to do with the information. — or should I say, they will fall back to “pat answers and prescriptions” that tend to be ineffectual.
You may wish to ask that question in the forums.
This makes good sense. But with my brain fog and lack of money, I don’t know how I could implement it. Just finding all the required herbs/medicines seems almost beyond me.
I buy bulk organic herbs off Amazon, many are around $18/lb and make my own OO Capsules. $18 for 900+ capsules is affordable. Trying to find many of these herbs in local shops is often very unlikely.
For example, 1 lb of Tulsi bulk tea is $16.00 http://www.amazon.com/Davidsons-Tea-Tulsi-Leaves-16-Ounce/dp/B005ATIDNC/ref=sr_1_1 no need to make capsules, just brew 3-5 cups a day instead. Neem would be the 2nd tea to add. It is a small, simple step…
Ken – OO – oregano oil?
OO is the largest size capsules
https://www.google.com/search?q=capsule+sizes&rlz=1C1CHFX_enUS650US650&espv=2&biw=1920&bih=955&tbm=isch&tbo=u&source=univ&sa=X&ved=0CC4QsARqFQoTCJ29rt2z1sgCFYxeHgod0GgABA#imgrc=E5TJTWuJsTUBZM%3A
I have suffered from CFS for 7 years. My neuro muscular specialist ordered a L/P blood test, lactic acid to pyruvate ratio. I scored above the normal and my doctor said it was indicative of my fatigue. I would recommend anyone unable to work such as myself to have this blood test as I was rewarded with social security disability benefits within three weeks of submission by my lawyer. So, I’ve known there’s a connection to lactic acid, but after nearly two years on all types of supplements, I am still suffering from CFS.
Thank you for that information about a test that seem to work for obtaining disability.
“but after nearly two years on all types of supplements” is very common with CFS trying to find something that works by random luck. My approach was to find a model that fits the reported peer-reviewed studies (filtering out people individual experiences) and then use the model to select try this and avoid that. For a starter:
Prescript Assist Probiotics (at bedtime)
Align Probiotics(at bedtime)
NO OTHER probiotics at the same time, most will defeat the benefit of the above
Tulsi tea 3 times a day
Neem tea 3 times a day
d-ribose – 1 -3 gm/day
Within 3 weeks there should be some changes… the odds are that at least one of the above will be effective. As always consult with your medical professional first.
Where do you get your Prescript Assist? I’ve been trying to get my doc to order me some and for whatever reason, it hasn’t happened. The probiotics I’m using help, but I feel like there must be one better than what I’m taking.
Why do you do the herbs as tea, do you need more than what capsules bring? How much do you use per cup?
Years ago, I tried ribose. It was too energizing for me. I have Hyper POTS not sure if it over activated sympathetic nervous system or what the problem was. Any ideas?
Issie
Doing as tea is what I suggest when the process of making pills etc is too overwhelming for a CFS patient. Trying to navigate brain-fog and scatterness is definitely a challenge.
Which probiotics are you on? VSL#3 ?
You can get Prescript Assist on
http://www.amazon.com/Prescript-Assist-Spectrum-Probiotic-Prebiotic-Complex/dp/B00JB2GOFI
and many other sites
Ken, thank you for all your help!
Do you think this probiotic is a safe bet?:
http://smile.amazon.com/Advanced-Orthomolecular-Research-Probiotic-3-Probiotic/dp/B0082DDQH6/ref=pd_bxgy_121_img_2?ie=UTF8&refRID=0MPW4G85XF0HDK5HTZTM
I’m going to be starting a new prebiotic regimen and this one doesn’t have prebiotics.
Thank You! And thank you for getting me off of “bad” probiotics that I’ve been taking forever thinking I was helping my health!
Judy
It seems you recommend teas or capsules. Do you think one is better than the other?
Has anyone tried diamox to reduce the co2 in the blood increasing O2 in the blood thus reducing the Lactic acid build up. I wonder if this would supply gut flora and alter it too. Just a laymans idea.
Back in the early 2000’s this was attempted by many on CFSFMExperimental. It resulted in some symptom improvement only.
Thanks. It’s an anti altitude sickness med almost other thinks and I have always felt the air hunger as if at altitude. Plus a lot of the research seems focus on the blood and O2 uptake it seems.
Right now i’d take even some symtom improvement?
Ken, this is really interesting.
I’ve noticed when I take medication or nutritional supplements of any sort, I get extremely achey, just like the feeling with lactic acid buildup. (It happens with food too, but to a lesser extent).
How would your theory explain this?
Thank you!
Drew I too have the same symptoms as you when taking many supplements and medications, also eating, ALL symptoms get far worse. So I too would be very keen to hear what this perhaps is and what may help it!
Look into MCAS (mast cell activation syndrome). You could be reacting to a filler in the supplements. Some react to added colors. There could be a food sensitivity but not a true allergy. With MCAS we may react one time, but not the next. It’s an over response to histamine. The mast cells get triggered to degranulation and they release histamine and inflammatory chemicals that cause pain.
Issie
Thanks very much, most helpful. Would you have any idea how or where one gets tested for MCAS ? I am in the UK.
Not sure in the UK. In the US docs are far and few between. I got DXd by an Immunologist and Neurologist at Mayo. Most of the doctors for MCAS are in the North East of the US. There are some very good forums that you can join and read to learn more. Many just do the treatment and see if there are improvement. The starting things can be gotten over the counter. Some of us had to have mast cell stabilizers added (very expensive) before we got improvement. (I did. Thankfully it is approved by my insurance.) There is a girl in the UK who has gone off her meds and does it with foods and supplements. She may can give you some names of docs. Her website is “High Histamine Chef”. Just tell her Issie told you to ask her.
Issie
Thank you Issie, will follow up on that.
Hi Issie. Thanks for the idea, but if only it were as simple as that. Unfortunately I react this way to ALL supplements, regardless of whether they have any fillers or not. I did try anti-histamines and they did absolutely nothing to help me.
Hmmm, sorry it didn’t work for you. Did you try all 3 histamine blockers and eliminate common allergens? Most of us are gluten and dairy free. The other thing some of us have to have the mast cell stabilizers. I got limited results until I added those. Also I started working on my immune system at gut level. The mast cell stabilizers helps in that area. I also went on low dose antibiotic and antimalarial herbs for Lyme and other protozoa. Had 2 years of “pretty good”. In a flare right now, doc thinks change of meds in order. Its Not working on protozoa any more. Doing a shake up and rotate. Will be adding some of the herbs and probiotics Ken is talking about here.
Issie
Hi Issie,
Could you please share what the “mast cell stabilizers” are, or where I can read more about that? Thanks!
The one I use is GastroCrom. The other one that some use is Ketitofin. There is no competition with GastroCrom in the USA and it’s very expensive. And last time I checked, Ketitofin had to be ordered from Canada. I think it’s pretty pricey too. But it sure has made a difference for me.
Issie
Thank you Issie! Is it a prescription drug or OTC?
Both are RXS.
Issie
So that’s really odd. Do you react that way to tablets and capsules and liquids and powders? Is that true for all brands?
So, how do we find non/low lactic acid producing probiotics?
I’ve been taking Mercola probiotics forever, and just asked them, and they do have lactic acid.
Thanks, Judy
Wikipedia has a detail explanation. In general, most forms of Lactobacillus. The problem is how your gut finds a balance.
Lactobacillales – Wikipedia, the free encyclopedia
https://en.wikipedia.org/wiki/Lactobacillales
Found it!
Found what? Do tell….
Hi Ken, nice piece.
As a practitioner with CFS i have researched a lot on this topic. After many long chats with Dr Henry Butt of Bioscreen Medical Australia, who does fecal microbe analysis, and did a lot of the research on gut flora alterations in the CFS patient, some things have become quite clear.
Firstly D-lactate or D-lactic acid, same thing, is the problem more so than L-lactate. Our bodies have enzyme pathways to break down the L form but not the D isomer, L is what our bodies make when we exercise but the D form is what the bad bugs in our gut make, like strep or enterococcus. These bugs break down sugar to form masses of D-lactate which has the same nasty effects as the normal L form but we can’t break it down very easily so it builds up quickly. Dr Henry also sights the D form as a neurotoxin.
So when talking about probiotics making Lactic acid, specifically we want probiotics that are D-lactate free probiotics, or low lactic acid formers, this is where some of the confusion comes in. In Australia we can get D-lactate free probiotics made by spectrumceuticals.
Unfortunately just by correcting gut flora imbalances is not enough, Henry would agree with this, CFS is more than just a gut flora imbalance, He has been studying this for many years, yes it is a major part of the problem to correct and massive gains are made in this area, but further work will usually still need to be done to restore full health. Possibly due to the damage done by these compounds or other factors, genetic, physiological, or biochemical.
Cheers,
Steve.
This is very interesting to me. I have had fibromyalgia symptoms for about 15 years, and CFS. I just assumed it was fibro and nothing much I could do about it. About three years ago, i did a research DNA study, and found out that i have the MTHFR defect where I cannot methylate B vitamins well. I have neuropathy in my feet, IBS, anxiety and all the other fibro and fatigue symptoms. So I started taking folated B vitamins, which helps the fatigue a bit. Looking back through my DNA results, I see where I have two recessive genes for galactosemia. Which means I could have a problem with lactose. I did cut out almost all milk products and my lifelong asthma went away. Reading this, I am interested in how all of this together could have caused the symptoms of fibro and also the MTHFR defect, and lactose problems. I realize it could take more years than I have left to live (I’m in my 60s). But it would be good to continue to look at all of these things together, to see what can be improved. I have been on social security disability for over 5 years now due to the problems. so its great to begin to put all this together.
I am cows milk lactose intolerant, Is this the same thing as lactic acidosis?
I also have GERD esophageal reflux.
Do fhese conditions affect my CFS? How?
Thank you for your information.
Yours truly,
Chanien Kreisel
Jerusalem, Israel
Hi,
***WARNING***. Be Careful.
I have now learned the hard way that this plan MAY backfire. I was operating at 50% functionality. I was able to handle a job from home on the computer with intermittant rests. The first week I worked my way up on NEEM – 6 OO capsules, the next week I add L Reuteri probiotics. Neither of these affected my too much. THe next week I add Minocycline for 1 week and now I am close to bedbound and all of my worst problems like anxiety and sleep issues have come flooding back. This week I am doing Align, but the damage from the Minocycline week is getting worse. At this point I am questioning what the f*ck I did as I am back in survival mode. So, after much inner turmoil, the only way I have to go is forward with the plan and pray that Ken’s recommendations work for me. Ken, I would love to talk with you and understand better what you went through. I expected the concept of the Herx where you feel worse so I am accepting that this is the on-going Herx as my gut tries to find some inner peace while continuing to throw the good and the killers at it.
Chris, during my 2000 relapse I herx bad for 3-4 months. In fact, so bad that I did not tell the non-CFS MD that was following Jadin protocol that I was herxing lest she stop prescribing the antibiotics. I understood from forums people doing antibiotics that it was a risk, often view as a very positive sign of change.
Chris, email me at Ken[at] lassesen.com and we can see if we can talk this weekend.
Ken,
Wasn’t that article about deleterious affects of probiotics on short gut syndrome only?
I’ve had FM for 25 years, no stomach or gut symptoms. I’ve taken a 15 lactobacillus strain of probiotic for a year, no effect positive or negative I can see though my hay fever symptoms were minimal this year, probably coincidence. A family member sells them and I get them free so, after some thought, I had started them. I just bot a one- time Ubiome test but just learned I have to be off probiotics for 6-8 weeks, took me forever to find out from them, if I want my ” native” bacteria only. Oddly, I’m now paranoid about stopping my probiotic and decided to do it anyway and see if the probiotics actually get there and what else is there while on them.
Correct, it was about one specific scenario. I believe that the scenario amplified the issue to the point of putting the person into coma. We know that CFSers tend to suffer from malabsorption which pushes them towards the same intestinal situation that short-gut has.
The unfortunate situation is that we are working with far more unknowns than knows. Your probiotics likely do not list the specific strains in them, even if they do, the odds are you will not find any research papers of them, or if you do, it would be for an issue unrelated to CFS.
Hi again Ken,
This isn’t a comment on your post per se but an enquiry about your thoughts on setting up a study. There’s no need to post this. Though I don’t mind if you do.
Are you aware of the website I started earlier this year called Mendus.org? In brief the idea was to setup a series of protocols that people could follow to test certain treatment options in a relatively standardized way. My hope is that it’ll provide people a more objective way to assess treatments and stimulate future lab-based research if we pool the individual datasets to allow group-level analyses. The site has been slowly building steam over the past months. I’ve got protocols setup for Q10, d-ribose, dark chocolate, a diet tracking study and soon Cort will be announcing a new one that will likely kick us up a few gears. But I still don’t feel we’re getting at the heart of the disorder.
For a few years now it’s been pretty clear to me as well that the problem lies in the gut, and specifically with the microbiome. I’m completely shocked I haven’t stumbled upon your site earlier. It’s provided a ton of ideas of studies that I (or we) could setup and start testing. I wanted to get your opinion first on what you feel would be most informative/productive to test, for individuals, and the potential influence on the research community (assuming we provide positive results). My initial thought was to test Mutaflor. Secondly, I wondered whether you’d be interested in helping design the study/protocol.
Thus far the studies I’ve setup have been fairly simple. We repeatedly measure core symptoms, activity levels and I have people do 3 cognitive tests several times and submit their scores. I’d love to introduce more measures and if you have any ideas on that front I’d be happy to hear them.
Take care and I look forward to hearing from you,
Joshua
Ha! Well it seems comment moderation has been turned off. 🙂
Comment moderation is kind of a dark hole. It’s supposed to automatically turn off after a couple of comments from a person have made it through. Usually that happens but not always – the comments of some prolific commenters still up in the moderation queue at times (sigh)
Jason, I appreciate Mendus so much! You say you don’t think you are really get to the heart of the issue and I want to encourage you to explore the attached sites. I’d really be interested in your opinion of the hypothesis and research and apparent success these guys are having with their very unusual approach. It really makes sense to me, and seems wells supported by the science, but I think it will be challenging to find a medical practitioner willing to flout convention and support such an unusual protocol.
This protocol, interestingly, was developed by scientists rather than MDs. They happened to be scientists who became very ill with chronic disease – one with CFS – and realized pretty quickly that if a solution was to be found they were going to have to find it themselves.
Their research about the human genome and chronic disease ties in nicely with your instinct about the gut microbiome. I think you may find synchronicities and some valuable ideas and information.
http://www.ncbi.nlm.nih.gov/pubmed/23370376
http://www.discoverymedicine.com/Amy-D-Proal/2014/05/22/inflammatory-disease-and-the-human-microbiome/
http://bacteriality.com/
http://www.prohealth.com/library/showarticle.cfm?libid=12507
http://oneradionetwork.com/health/amy-proal-l-form-bacteria-biofilms-vitamin-d-should-you-take-it-01-11-10/
http://mpkb.org/home/patients/protocol_overview
Best regards,
Katherine
Kate, this is so interesting, thanks for these links. Really keen to hear views on this approach.
With regards to “Immunosuppressive therapies for inflammatory diseases” I’m wondering if anyone can give opinion as to whether LDI (low dose immunotherapy) as a treatment option? I have just started LDI (note this is a new form of LDI treatment being pioneered by a Dr. Ty Vincent in Alaska and differs from the older standard LDI) as I have been diagnosed with CFS/FM 3 years ago and recently with Lyme Disease. As this new treatment of LDI has shown positive results with not just Lyme but also CFS/ME & FM I’m wondering after reading the very interesting articles Kate supplied if anyone has views on this?
I have watched and listened to info on this. It brings up questions for me. Since it is more like immunotherapy rather than “killing off”, of Lyme. Does it make the immune system start to recognize these foreign pathogens and therefore “kill them off”? Or does it just make your body co-exist with them and you have no reaction to them? Some of the coinfection and protozoa related to Lyme and Protomyzoa Rehumatica form biofilm that interfere with the veins and their function in regard to dilating, contracting and blood flow. If we don’t get that cleared out of our body the mechanics of the veins and blood isn’t corrected.
So, I’d like to have those questions answered before I did it. The testimonies are excellent with it. Has the science been done to find out how it works other than triggering non immune response? And why is there no longer immune response? Does it cause a non reaction to continuing existent pathogens or does it cause the body to start noticing these things and eliminate them?
Issie
Our body co-exists with millions of different strains of bacteria, literally millions. There was a recent study where for a group of patients with different diseases they took gut bacteria and did detail analysis and then pushed the data through machine learning. The results was tested on the next set of patients and the disease was correctly predicted from the gut bacteria alone 92% of the time.
When we become ill, the virus or bacteria sends signals to the bacteria (signals that generally are please make more of X,Y,Z for ME) which changes the gut bacteria. Most of the time, one the virus or bacteria is defeated, the bacteria returns to the mix it had before. In a few cases it may take months, and some symptoms of the disease (caused by the bacteria shift) may linger on — despite being “free of the disease”. In some cases, the shift stays.
It is this later case which I suspect chronic Lyme is.
So then if we comfortably co-exist with these protozoa – they exist by forming a biofilm. That doesn’t correct the vein dysfunction the biofilm causes. And within the biofilm live virus, bacteria and protozoa. So if this is causing issues with blood flow – it wouldn’t be corrected – Right? So I’m thinking unless we break down the biofilm, expose what’s in it and the immune system then Correctly identifies what’s not needed and not wanted – we will be in a vicious circle of flares. Not to mention an inflammatory state due to cytokines.
The latest seminar I attended on Lyme the doc is of the opinion that it can’t be totally eliminated and it will be an on going balancing act with flares. That is also Dr Fry’ feelings about Protomyzoa Rehumatica. He feels he is on to something to help but the research isn’t complete yet. At this time there is no known “cure”.
Issie
So then if we comfortably co-exist with these protozoa – they exist by forming a biofilm. That doesn’t correct the vein dysfunction the biofilm causes. And within the biofilm live virus, bacteria and protozoa. So if this is causing issues with blood flow – it wouldn’t be corrected – Right? So I’m thinking unless we break down the biofilm, expose what’s in it and the immune system then Correctly identifies what’s not needed and not wanted and they get eliminated – we will be in a vicious circle of flares. Not to mention an inflammatory state due to cytokines.
The latest seminar I attended on Lyme the doc is of the opinion that it can’t be totally eliminated and it will be an on going balancing act with flares. That is also Dr Fry’ feelings about Protomyzoa Rehumatica. He feels he is on to something to help but the research isn’t complete yet. At this time there is no known “cure”.
Issie
Regarding the new treatment of LDI here is a good answer sheet to most FAQs. Scroll to number 10 for an answer to your particular question Issie.https://attachment.fbsbx.com/file_download.php?id=422619114603504&eid=AStKTyb9O8BBD39kFGfaLliiZ_LJznpO4nvT98rGwbUjWi2vKvUAHxyKA26WjfPizE0&ext=1444982905&hash=ASvo0Fm_Q23Dj5CE
I’m not being able to pull up your link. Could you copy and paste that answer? Thanks.
Issie
This LDI link goes to a blank page. Can anyone else open it?
http://www.treatlyme.net/webinar-recordings/conversations-with-marty-ross-md-102115
I just listened to this and he gives his opinion on LDI. Seems he wonders same things I do.
I’m not tolerating this new antibiotic well. I’m thinking of going herbal for awhile. Got to get my gut flora back in check. Now I’m having neurological issues with it. Symptoms of one of the coinfections. I was also exposed to mold and that’s when my flare got going. May need to attack things in a different way. Always something else to learn about. Seems to be a constant juggling act.
Issie
I am adding a page to your list
http://www.drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS
Well I for one Joshua am pleased it was turned off as it’s led me to your great website 🙂 I have just signed up. I’m already taking D-Ribose for 2 months now so I believe to late to join that study. However, because of this very discussion I yesterday ordered Mutaflor from Germany and through out my current probiotics! So, I’d be happy to join a Mutaflor study.
Hi Karin. Great! How soon do you expect it? Not sure I could have an official study up and running by the time you get your Mutaflor but if we could decide on what to measure we could at least have you keeping track of everything. Then we could retrospectively enter your data.
Along with the basic core symptoms, activity levels and cognitive tests I think more details about gastro-troubles should be taken. I’m not sure how to do that though. I’ll look into it. I wonder if there is such a thing as a poop-scale! A quick and ‘dirty’ measure of the quality of GI output. 🙂
Probably doing a gut analysis at Ubiome.com -$99 is a good start. However, it does not address yeast, virus, or potential gut fungus
Other than that, you good query Gi issues, gas, bloating, pain, diarrhea, poop shape and consistency, constipation, etc
Joshua, I expect it by Saturday. I can start it and keep a diary of symptom changes to update once you have it up and running. Not sure about the “poop-scale” but err…open to suggestions on that one.
Thanks Chris. Joshua I had a stool- gut pathology report done a little while ago. I’d be grateful if I could send it to you (or anyone else that’s willing!) to look over and get your opinion as with my brain fog I need help with it (I’d attach it here but it’s pdf). In the meantime I will start the ‘Mutaflor’ tomorrow and keep a diary of any changes/symptoms to update to your Mutaflor trial project once it’s up and active.
@ Chris, I’m definitely going to include a means to log these Ubiome (or similar) results. I’ve also found a poop scale (The Bristol Stool Scale) and am trying to get permission for an IBS scale.
@ Karin, I probably can’t help with interpretation of your gut report (quite yet) but please do send it to me (mendus.org at gmail.com). I have no idea what these things look like and will need to devise a way for participants to enter their data for the study.
Currently the plan is two include two possible manipulations which can be freely chosen by each participant. Mutaflor and betaine HCl. My hope is that we’ll end with 3 groups: Mutaflor only, betaine HCl only and both. The reason for including betaine is that it is used to increase stomach acid. Sufficient acid is required to get sodium bicarb. release to neutralize the acid. Otherwise the chyme entering the small intestine is too acidic. This certainly wouldn’t help the imbalance in microflora. So, we try Mutaflor to upregulate e.coli and betaine as a general alkalizer to give them a more optimal environment to go to war in.
Still a work in progress so suggestions are welcome.
@ Kate, I’m familiar with the basics of the Marshal Protocol but that’s it. My general (admittedly naive) view is anti-antibiotics. Given the ridiculous number of bacterial strains living and working in our systems I feel we don’t have a clear enough understanding of which we’re killing and what impact killing one has on the rest of them (and us). This is where fecal transplants are potentially so important. The ability to repoopulate with a whole society of bacteria rather than just a few strains here and there (as with probiotics) has huge potential.
Joshua or anyone can you please tell me in regards to…. “The reason for including betaine is that it is used to increase stomach acid. Sufficient acid is required to get sodium bicarb. release to neutralize the acid.” Is it OK to take apple cider vinegar and lemon on warm water if we are aiming to “increase stomach acid” ??
Hi Karin,
Tough call. In terms of running a study and having any semblance of control (or standardization) I’d say no. Since we won’t likely have a good measure of stomach acid, if everyone does something different we’ll wind up with a mess of data that we can’t make much sense of. If we had a good measure of stomach acid than we could control for that variability. On the other hand, my goal with these studies is first and foremost the individual; to give you a means of assessing a treatment somewhat more objectively than… “yeah, I think it worked okay”. So in that sense, this is YOUR experiment and you’re free to do as you please and see fit.
My suggestion, unless you’re sure you have low stomach acid, would be to not include a digestive aid at all. Stick with your normal routine and see how Mutaflor works on it’s own. If it seems to work well you can always throw in other manipulations later on.
Josh
Thanks, understood. I will stop the apple cider vinegar for now then (been on it a week). I will also stop the magnesium supplements, 500mg per day I have been taking as read many times it helped with the muscle twitching / spasms and many with lyme and CFS are deficient in magnesium. But it does mess with your stomach in regards to often causes diarrhoea and now I read it actually ‘feeds the biofilm’ with Lyme! The information on what and what not to take and do can be highly confusing at times.
That’s the biggest hurtle to overcome in doing a DIY study and trying to merge everyone’s data. The variability is huge. However, many of these things can be controlled for statistically, as long as I have the information. I’d never ask people to stop doing what they’re doing. Especially if they feel it’s working. Many preliminary studies look at the influence of a treatment when the participants are on other things. It’s not ideal but pragmatic in certain scenarios. I will send out a short survey, either at signup or after the study, asking questions like what other supplements are you taking.
My point is, you don’t need to stop taking magnesium (or whatever else) just for the study. Of course it is up to you but it’s fine to continue that, and even the lemon juice.
Sorry if that adds to your confusion. 🙂
Josh
http://www.cortjohnson.org/forums/threads/dr-stephen-fry-and-protozoa-my-life-is-greatly-improving.2122/
Here’s some more info on biofilm and protozoa.
Issie
Hi Joshua,
I agree with you about the fecal transplants. My understanding of the Marshall Protocol is that it can be successfully used even without antibiotics, although I have not tried it either way, yet. I guess my thinking is that you would be very interested in some of the papers and conference presentations around the microbiome, how related/similar a lot of the “autoimmune” and other chronic illnesses are, the role of the two forms of Vitamin D and the action of Vitamin D as a secosteroid (meaning it suppresses the immune system and should be avoided), the paradigm shift away from “one pathogen, one disease” and other really interesting information and discussion around some of the emerging science behind these illnesses.
I’m definitely interested in the field in general. I couldn’t agree more that we’re in the midst of a major shift in the way we view disease. I don’t think medicine will ever be the same after the implications of the microbiome start to become more apparent. It’s a very exciting time. But there is simply too much information to try to keep up with, particularly with a foggy CFS brain. 🙂
🙂 I certainly understand that!
Kate could you please supply a link to any of the papers informing of vitamin D being detrimental ? I’m concerned as since starting this new LDI treatment Iv’e been instructed to take 10,000 IU Vitamin D3 daily as it’s supposed to ‘open up the channels’ to recieve the LDI more effectively. Issie, same with Magnesium, I have been taking high levels of Mag as it’s supposed to help with muscle twitching/jerks and pain which I suffer from. I’m now thinking I’m taking entirely the wrong things!?
http://beforeitsnews.com/health/2012/07/protomyxzoa-rheumatica-implicated-in-chronic-illnesses-2386928.html
Here’s some notes from a seminar of a review from Dr Fry on Protomyzoa Rehumatica and biofilm and minerals in regards to them. There are some very scientific papers with research on various types of bacteria and organisms and formation of biofilm. You can do a Google search and pull those up. Also another paper from another scientist – I read it years ago- talking about biofilm and it’s function and what strengthen it and things used to break it down. I’ll try to remember that researchers name. If I find it, I’ll post it.
Issie
Hi Karin,
I don’t know what to do either – nobody really does, we are stumbling around in the dark. But at least now we are holding hands and sharing a flashlight. :).
Yes magnesium helps pathogens form bio films which makes them much harder to kill – so we don’t like to take magnesium. At the same time though, our bodies desperately need magnesium to function and in particular for metabolism of energy. So…..by starving the critters we also starve our cells. What I learned from the Marshall protocol is that there are two forms of vitamin D and while sick people are low in one they are often very high in the other – but the other one is rarely tested. Someone in this chain talked about their bizarrely high levels of this second form, the bio available form of d. The D3 you get in food and supplements and from sunlight is considered a seco steroid and yes, taking large quantities will make you feel better. The Marshall Protocol hypothesizes it makes you feel better the same way other steroids make you feel better – by suppressing immune system – trading short term symptom relief for long term proliferation of your infection. Here is one article and you can also go to YouTube and search for Amy Proal or Trevor Marshall and you will find several conference presentations you will find enlightening. There are many papers on this and their websites include lots of research references.
http://www.ncbi.nlm.nih.gov/pubmed/19393200
http://www.ncbi.nlm.nih.gov/pubmed/19758177
Here is a good article which explains it in lay mans terms
http://jdmoyer.com/2012/11/18/vitamin-d-revisited/
The article gives you plenty of dissenting opinions. I think the dissenters are quite possibly wrong, but vitamin d is the darling of medicine right now – both holistic and mainstream – so anyone who questions the sacred cow is considered a quack. Until the medical community changes it’s mind. Which it does, about every 10 years. I remember when margarine was touted as a health food by the MDs. That would be what we now call “trans fats”. The last dissenter, in particular, does not seem well informed. For example he attacks several facets of impaired immunity that seem to be widely accepted. And he is very sarcastic which tends to indicate emotional attachment to his position rather than objectivity.
Here is one of the YouTube presentations, a little easier on the brain Check out this video on YouTube:
http://youtu.be/CQyA4Y5MOwc
I don’t know what to say about supplements. I’ve decided to take magnesium when symptoms get really bad but try to primarily get nutrients from food. I used to take D but no longer do. Good luck!
Wow, thank you, lot’s to go through there, I’ll take a good look.
Hi Karin,
I don’t know what to do either – nobody really does, we are stumbling around in the dark. But at least now we are holding hands and sharing a flashlight. :).
Yes magnesium helps pathogens form bio films which makes them much harder to kill – so we don’t like to take magnesium. At the same time though, our bodies desperately need magnesium to function and in particular for metabolism of energy. So…..by starving the critters we also starve our cells.
What I learned from the Marshall protocol is that there are two forms of vitamin D and while sick people are low in one they are often very high in the other – but the other one is rarely tested. Someone in this chain talked about their bizarrely high levels of this second form, the bio available form of d.
The D3 you get in food and supplements and from sunlight is considered a seco steroid and yes, taking large quantities will make you feel better.
The Marshall Protocol hypothesizes it makes you feel better the same way other steroids make you feel better – by suppressing immune system – trading short term symptom relief for long term proliferation of your infection.
Here is one article and you can also go to YouTube and search for Amy Proal or Trevor Marshall and you will find several conference presentations you will find enlightening. There are many papers on this and their websites include lots of research references.
http://www.ncbi.nlm.nih.gov/pubmed/19393200
http://www.ncbi.nlm.nih.gov/pubmed/19758177
Here is a good article which explains it in lay mans terms
http://jdmoyer.com/2012/11/18/vitamin-d-revisited/
The article gives you plenty of dissenting opinions. I think the dissenters are quite possibly wrong, but vitamin d is the darling of medicine right now – both holistic and mainstream – so anyone who questions the sacred cow is considered a quack. Until the medical community changes it’s mind. Which it does, about every 10 years. I remember when margarine was touted as a health food by the MDs. That would be what we now call “trans fats”.
The last dissenter, in particular, does not seem well informed. For example he attacks several facets of impaired immunity that seem to be widely accepted. And he is very sarcastic which tends to indicate emotional attachment to his position rather than objectivity.
Here is one of the YouTube presentations, a little easier on the brain Check out this video on YouTube:
http://youtu.be/CQyA4Y5MOwc
I don’t know what to say about supplements. I’ve decided to take magnesium when symptoms get really bad but try to primarily get nutrients from food. I used to take D but no longer do. Good luck!
Hi Karin,
I don’t know what to do either – nobody really does, we are stumbling around in the dark. But at least now we are holding hands and sharing a flashlight. :).
Yes magnesium helps pathogens form bio films which makes them much harder to kill – so we don’t like to take magnesium. At the same time though, our bodies desperately need magnesium to function and in particular for metabolism of energy. And the bugs seem to be able to steal our magnesium from our cells to use for the biofilm. So…..by starving the critters we also starve our cells.
What I learned from the Marshall protocol is that there are two forms of vitamin D and while sick people often test low in D3 they are often very high in the bioavailable version – what the body converts D3 into in order to actually use it. But that form is rarely tested, so doctors don’t know the levels of the other form of D are too high. They are only testing for one end of the seesaw. Someone in this chain talked about their bizarrely high levels of this second form, the bio available form.
The D3 you get in food and supplements and from sunlight is considered a secosteroid and yes, taking large quantities will make you feel better.
The Marshall Protocol hypothesizes it makes you feel better the same way other steroids make you feel better – by suppressing your immune function – trading short term symptom relief for long term proliferation of infection/cancer/etc.
Here are a couple of published papers on the D3 subject specifically, and you can also go to YouTube and search for Amy Proal or Trevor Marshall and you will find several conference presentations you will find enlightening. There are many papers on this and their websites include lots of research references.
http://www.ncbi.nlm.nih.gov/pubmed/19393200
http://www.ncbi.nlm.nih.gov/pubmed/19758177
Here is a good article which explains it in laymans terms
http://jdmoyer.com/2012/11/18/vitamin-d-revisited/
The article gives you plenty of dissenting opinions. I think the dissenters are quite possibly wrong, but vitamin D is the darling of medicine right now – both holistic and mainstream – so anyone who questions the sacred cow is considered a quack. That is, Until the medical community changes it’s mind. Which it does, about every 10 years. I remember when margarine was touted as a health food by everyone. That would be what we now call “trans fats” and “partially hydrogenated vegetable oil.”
The last dissenter, in particular, does not seem well informed. For example he attacks several facets of impaired immunity that seem to be widely accepted (the bit about T cells for example). And he is very sarcastic which tends to indicate emotional attachment to his position rather than objectivity.
Here is one of the YouTube presentations, a little easier on the brain….. Check out this video on YouTube:
http://youtu.be/CQyA4Y5MOwc
I don’t know what to say about supplements. I’ve decided to take magnesium when symptoms get really bad (muscle cramps keeping me awake, not being able to lift my head up) , but try to primarily get nutrients from food. I used to take D but no longer do. I am not on the Marshall Protocol but am very intrigued by it. For now, i just quit taking the supplemental D. Marshall’s presentations and research make sense to me in a lot of ways. But you have to do it under a doctor’s supervision as herx can be severe.
Good luck! One thing i can say is that if you do take supplements, make sure you are taking the very highest quality you can get. I think the cheap ones are probably worse than taking nothing at all. You would be better using the money to buy organic high quality fresh food.
Let me know what you think, I am interested in your reactions.
Karin,
Here is a presentation by Dr. Marshall that is more focused on the Vitamin D issues more clearly than Amy’s presentation, although I recommend watching both. Dr. Marshall is a PhD, not an MD. More importantly, he is a patient (sarcoidosis) who, like many of us, was told there is no treatment and he will just have to suffer. As a patient, and a scientist, he did his own research and devised his own cure when the medical gurus could offer him only a death sentence. That’s what makes me sit up and pay attention.
https://www.youtube.com/watch?v=iO-f0cqnz-4
Two questions come to mind.
First, what effect would a ketogenic diet have on these bacteria? Dr. Wahls has been using a ketogenic diet to revitalize mitochondria in MS patients, and I wonder how this works for CFS/ME re gut bacteria.
Second, once you get a uBiome test, how the heck do you get good interpretation? I had a thought this morning that perhaps one could get an inexpensive consult from a doctor overseas online, if we knew of one that was really up on the microbiome. uBiome offers a 20 minute consult with one of their “experts” for $150 IIRC. That doesn’t seem like value to me, as I don’t know the expertise of their personnel on lactic acid producing species.
Just got this from UBIOME
Here’s your chance to ask her anything!
Jessica will be doing a reddit AMA (Ask Me Anything) tomorrow, 10/16 from 10-11am PT. This is your chance to ask her about uBiome, citizen science, the microbiome, bacteria, or anything at all.
If you are unfamiliar with reddit, HERE is a guide that will help prepare you for her upcoming AMA. We will be emailing and posting the link to the AMA when it is live, tomorrow.
Looking forward!
Alexandra, Zack and the uBiome Team
Copyright © 2015 uBiome, All rights reserved.
You’re a welcome and valued part of our uBiome community. Thank you for being here!
Our mailing address is:
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If I’m understanding a ketogenic diet correctly, it’s high in fat. With issues like Protomyzoa Rehumatica and other coinfections to Lyme – my doc has found that fat – especially from animal origin feeds them. He has also found that magnesium causes the biofilm that houses them to be reinforced and made stronger with magnesium. (Lots of info on Internet confirming mag vs biofilm.) So his patients are to be Low fat, whole food Vegans. We are to not supplement with magnesium or use Epsom salt baths as that is magnesium. What we get in our foods is okay as it is mixed with other minerals in proper proportion and not concentrated and isolated. We all need a certain amount of fat for brain function and with a whole food plant based diet – we get that. (I do supplement a few times a week with an algae source DHA.) I have completely reversed stage 3 Chronic Kidney Disease with this diet. It has made a HUGE improvement in my health all around. I feel it was the key to saving my life – literally.
Issie
This is not an optimistic study for an already sugar-loaded product IMO.
Maybe I just don’t want to give up my free lactobacillus!-loaded probiotics.
http://www.express.co.uk/life-style/health/509785/Brits-are-wasting-millions-of-pounds-of-probiotic-drinks
Hi Ken,
Thanks for a fascinating post.
Do you still need to keep taking the probiotics/antibiotics? or are you well enough to not need them?
Thanks
Barbara
“And now for something completely different!”
This is so Must-Have for me, now more than ever, what with all I’m learning about the source of the problems.
I heard David Wolfe years ago talk about how the Zapper heals ME/CFS, and I’ve always wanted to try one. Now I think it may be the time to make the financial investment! I need to find out how to deal with the die-off from Zapping first though…
What do YOU think?!
Judy
http://www.longevitywarehouse.com/blog/the-future-of-electronic-therapy/?utm_source=Longevity+Warehouse&utm_campaign=e921dfddd3-5_Steps_to_a_Flat_Stomach8_24_2015&utm_medium=email&utm_term=0_410e72ecec-e921dfddd3-112481201&goal=0_410e72ecec-e921dfddd3-112481201&mc_cid=e921dfddd3&mc_eid=7c647f9f19
I would not discourage you. I think a zapper can be helpful. But I used one for years and years. I find it a help, not a cure. Oddly, it seems to help with nerve pain somewhat. I’m not using mine currently, but it’s there when I want to pick it up again.
Try easing into it slowly — one cycle every other day, perhaps, then increase. At times I’ve used it twice daily. I’ve used both commercially available models and home built ones. If you know how to use a soldering iron, you can easily construct one for less than $50 (I’m being conservative — probably less than that).
Then, if you find it doesn’t help, well it’s not much of a loss. 🙂
Hi Karin,
I started LDI treatment about 11 weeks ago. My first dose made me feel very energetic for about 2 weeks then back to baseline. I took a “booster” dose at 3 weeks which caused my immune system to flare up and I had a virus for a month. I’m about to take my 2nd regular dose and see what happens. My LDI was made from my stool by the way so its very specific to me. I have a lot of gut symptoms, SIBO etc. I believe since it started for me with Giardia that my illness stems from my gut troubles. At least it feels like that to me so I am very interested in this particular blog and all the probiotic/herbal info. Xifaxan helped a lot but its too expensive and I don’t want to be on pharmaceutical antibiotics. I then did Allimed and Neem which also helped for a time. I think my gut bugs are now resistant, but who knows for sure.
Thanks so much Ken for all of this information and especially about the gut. I am still reading all the links etc.
Sandra, thank you for that info. I took my first dose of 15C (Lyme & yeast mixed) and felt nothing, as there was even the question of was the fluid in the syringe or had it leaked from cabin pressure when shipped by air to me in the UK)? Anyhow, I did a booster 3 weeks later also and I flared for sure. So, now I’m waiting the protocols 7 weeks till my next dose which my doctor believes should be quite a bit weaker and we work up gradually to avoid the ‘flare’. I’m most interested to learn about your experience. Did you start with regular LDI before you moved onto using your stool ? May I ask which doctor you are with ? Dr. Ty Vincent I know does this and in my mind if the regular LDI approach doesn’t work for me my next step would to be what you are doing and use the stool. I thought I’d need to fly to the States and stay for a while in order to do this, but perhaps there would be another way around it? I’d be most interested to learn more from you if you don’t mind? Thank you.
Judy,
I’ve tried numerous electronic gadgets recently…advanced portable Quelle tens, Thync, Sleephat…none of them worked for me, though they apparently worked for others. One thing in common, though, was a free trial, with all of these scientists realizing their device won’t work for everyone.
I don’t know if there is any science behind the Zapper but that’s a lot of money for something that I, at least, have never heard of.
Judy,
I’ve tried numerous electronic gadgets recently…advanced portable Quelle tens, Thync, Sleephat…none of them worked for me, though they apparently worked for others. One thing in common, though, was a free trial, with all of these scientists realizing their device won’t work for everyone.
I don’t know if there is any science behind the Zapper but that’s a lot of money for something that I, at least, have never heard of.
Thanks, Steve, apparently the Zapper is pure science (fascinating too; been researching). I expect I’m going to need to use it a lot for a long period of time to get results. I hope I’m one of the lucky ones who does! Yes, it’s a huge investment alright!!
Judy
Here is a link for a $10 version.
http://www.zapperplans.com/order.php
In the meantime – you should consider the source
http://www.quackwatch.com/01QuackeryRelatedTopics/Cancer/clark.html
Oh dear! That’s not good!
It’s definitely going to be a risk to try the Longevity Zapper because they don’t allow refunds on used Zappers.
It’s often difficult to know what to believe. For example, some call Clayton Nolte’s Structured Water Devices a “hoax” and “pseudo science” but they are so totally wrong about that! Myself and others are receiving rather miraculous health benefits from using his devices. I even sell them. http://www.structured-water-devices.com.
All I can think to do when my Zapper arrives is to be muscle-tested on it before opening the package. The body doesn’t lie. Kinesiology has been a very accurate science for me.
After reading Ken’s amazing work here, I had my daughter muscle-test me on the Mercola Probiotics I’d been taking forever, and sure enough, my arm went weak. I muscle-tested on the Prescript-Assist Probiotics Ken recommends, and my arm stayed strong!
Judy
Hi Judy,
I understand. I like Ken’s approach because he is using Pubmed and looking at published studies that show benefit. It would be nice if we could try stuff and if it worked for us, then pay. The problem I have with zappers is that you don’t really know for sure what they are doing. Sure they may be able to kill microbes in water, but going from that to killing parasites in the gut (that’s a big leap of faith for me.) Of course, there are positive testimonies and reviews everywhere, but which are true. If you can afford it and it doesn’t hurt you, then why not try.
http://business.time.com/2012/02/03/9-reasons-why-you-shouldnt-trust-online-reviews/
Here’s more research:
http://zap.intergate.ca/zappers.html#wolfe
Seems there may be one “true” and “healing” zapper out there…
but it’s NOT Longevity’s, and I will be returning the unopened package for a refund.
I owe you a debt of gratitude, Chris! Thank You!
Hoo boy, apparently, “The Ultimate Zapper” and “The ParaZapper” each claim to be the only authentic and healthy zapper, and both are attacking the other calling each other frauds.
Ugh.
I give up.
No zapper for me!
This is off the gut bacteria topic, but has anyone tried using oxygen to shift back to aerobic metabolism from anaerobic metabolism? In looking at the Aerobic and Anaerobic chart above it seems like giving someone oxygen might shift physiology back to normal.
I remember when Michelle Akers (women’s soccer team captain) was taken off the field immediately after the team won the championship many year ago, they gave her oxygen. She had CFS and her career ended after that championship game.
Doesn’t it make sense that simply giving oxygen might correct some of the immediate effects of too much lactic acid buildup? Are there any physiologists out there who would know if this might be helpful or if it would make things worse?
I remember when I was in the initial stages of becoming ill with CFS, but didn’t know what I had, I was still trying to exercise. After a long bike ride one time I couldn’t pedal one more minute. I got off the bike and lay down on the road and could hardly breathe. Felt like I was suffocating. That sensation still happens to me now when I exert myself too much, but it happens when I do very little sustained activity.
Hi Tanja,
I wish it was that simple. Dr Cheney went down that route and found that giving supplemental Oxygen to his patients made them worse. His premise being that the process that takes Oxygen and Food to make energy is broken and adding more Oxygen increases free radicals as the body can’t process it correctly.
Hi Chris,
I knew someone out there would have the answer. I was wondering if oxygen might make a broken system worse or if it might help us, but just hadn’t read anything about it lately. Too bad there can’t be an easy fix for anything that is wrong with us….everything has to be so complex! Ugh!
Thanks for responding. I guess I won’t be asking my PCP to let me try oxygen.
On the topic of “zappers” — I do not know all the products that are called zappers on the market, I only know the ones based on Hulda Clark’s books (which include schematics for building her zapper and other electronic gadgets used in her program). So take my comments in this narrow context.
The zapper is part of a system of healing, which includes a fanatical avoidance of certain substances and toxins, a number of herbs (particularly a combination of anti-parasite herbs that are probably also antibiotic, antiviral, and antifungal to some degree), and some general advice about foods, etc.
In addition to the zapper, which was never claimed to reach the interior of the gut — where all the action that Ken is talking about occurs, there is a device called a zappicator. This is claimed to reach places the zapper cannot. Never tried one, so I cannot add any positive or negative testimony. Since I do feel an effect from the zapper, I lend some credence to at least the possibility of the zappicator also being helpful.
Everybody selling zappers seems to claim to have the best zapper. There is a man, Arthur Doerkson, who has a long series of videos explaining zappers and zappicators and other aspects of this healing system, who claims to have known and worked with Dr. Clark. His equipment is also expensive, but I believe he also had a one year money back guarantee if not satisfied (and five year parts/labor warranty). I have seriously considered trying it out, but have not taken the plunge. If the zappicator could have effects on my gut that the zapper cannot, it would certainly be worth every penny. Perhaps I will build my own zappicator and test it first.
Doerkson’s videos are all on YouTube at https://www.youtube.com/user/ad7077/videos
A friend of my elderly mother, a pharmacist, has bought the equipment (zapper/zappicator) from Doerkson and uses it regularly. I haven’t talked to him about it recently but AFAIK he is still using it for general health maintenance.
Yes, I know Quackwatch poo-poohs anything like the above. In my opinion they have their own agenda, and I value my own experience more than their opinions. But everyone has to make their own judgments.
Again, I would expect these to be at best helpful, not curative. I offer this not as any kind of endorsement, but if people want to know more about the concept, watch the videos — as I thought they were fairly good explanations of the concept. When it comes to alternative health, I am less impressed with explanations than with results. I am willing to experiment and draw my own conclusions if I think there is a moderate chance of success. But CFS is a devilish beast. There’s a line in Paul Simon’s song Allergies… “We get better but we never get well,” that seems to sum up the problem for so many of us.
Zappers don’t pass the smell test for me though a year trial is unusual. I watched a bunch of the videos and also looked up Hulda Clark. I’m glad you somehow find it helpful but I can’t buy the assertions and Clark’s career appears to mirror that of most quacks fleecing the desperate, IMO, but the frosting on the cake is her demise from multiple myeloma. Either the zapper doesn’t work and she ignored conventional treatment or zapping oneself millions of hours is harmful and she destroyed her own immune system. My brother died of AIDS and a family friend died of breast cancer after “going green” and refusing conventional treatment so I’m pretty wary of those preying on the dying.
Hi Steve,
Don’t people on conventional treatment die of those illnesses as well? Does that make the medical establishment a bunch of quacks?
I don’t know anything about the zapper one way or the other but calling it a scam because Hulda Clark died of multiple myeloma strikes me as disingenuous….Marie Curie died of radiation poisoning, does that make radiation therapy a scam and Madame Curie a quack?
Everyone is after your money. Conventional and non conventional. Period. If that is the basis for being a quack, my local, world-class, highly respected, cancer hospital heads the list. A consult for a second opinion – no tests required – $30,000 up front. $30K to talk to a doctor for an hour about your case.
This woman promised people with the worst immunological disorders in the world that she could cure them, then died of one herself despite using her “cure”. The only slack I’ll cut her is if she was merely a deluded true believer in her own theories, rather than a malevolent fraudster. Certainly, anyone here can buy and use any device they can get afford and get their hands on. Just because Clark strikes me as a scammer doesn’t mean I always trust conventional medical providers but I won’t be treated by people I don’t trust. Our expensive but only moderately effective medical treatment is a symptom of political corruption IMO but I’m not going to rant on Cort’s quite helpful blog.
Hi Steve,
I apologize to you. On review, my choice of words was poor. 🙁 My intent was not to send you on a rant or add to anyone’s stress or grief. 🙁
I just tend to cut some slack to people who seem to be trying to help sick people, even if they don’t have the resources to do clinical trials or the respect of the mainstream. This is partly because of the obscene neglect of our illness by the NIH and other “respected” mainstream outfits – which makes them unqualified to comment on what anyone else is doing, in my opinion – and partly because some of those “quacks” have helped me – at great risk of being persecuted by the mainstream – when nobody else cared. And what they taught me is now being borne out by these mainstream researchers, 20 years later.
That doesn’t mean there aren’t people out there taking advantage of sick people. Of course there are, both mainstream and alternative. And sick people are desperate because the people who are supposed to be helping them are not even interested. We have a massive failure of health care in this country. And I agree with you on the likely causes of that and I don’t want to rant on Cort’s site either, so my apologies to Cort, too. 🙁
The problem with so many treatments, whether they be conventional or unconventional, is that they are oversold. For various reasons, even the best treatments do not work sometimes. We’re all going to die of something. Exercise is wonderful, but Jack LaLanne is still deceased.
I think it will probably help some people. It helped me, with some symptoms. It also causes a reaction similar to die-off, so I would cautiously use it only a little to start with — every other day or every third day. Then increase the “dose.” I used it twice a day, once I had worked up to it.
Mostly I recommend, if people want to try it, that they build their own unit. The schematics are readily available. An IC chip, a few parts, a plastic box, a switch, an LED, some alligator clips and wires and two copper pipes, a little soldering. Voila. If it doesn’t work for you, you wasted $50 and a little time. That hardly compares to multi-thousands of dollars to visit one of the specialist CFS/ME docs, or at least one particular one I am thinking of.
I have been willing to try a lot of things that seem low cost and low risk, both drugs and supplements and other treatments. Most of them (maybe 90%) have not had any noticeable effect for me. A few of them have, among them being the zapper, a magnetic pulser, high dose oral vitamin C, CoQ10, glandular concentrates, d-ribose, raw garlic, and a few others. So even if a zapper does not appeal to you, there are plenty of other options to try! 🙂
Zappers don’t pass the smell test for me though a year trial is unusual. I watched a bunch of the videos and also looked up Hulda Clark. I’m glad you somehow find it helpful but I can’t buy the assertions and Clark’s career appears to mirror that of most quacks fleecing the desperate, IMO, but the frosting on the cake is her demise from multiple myeloma. Either the zapper doesn’t work and she ignored conventional treatment or zapping oneself millions of hours is harmful and she destroyed her own immune system. My brother died of AIDS and a family friend died of breast cancer after “going green” and refusing conventional treatment so I’m pretty wary of those preying on the dying.
This woman promised people with the worst immunological disorders in the world that she could cure them, then died of one herself despite using her “cure”. The only slack I’ll cut her is if she was merely a deluded true believer in her own theories, rather than a malevolent fraudster. Certainly, anyone here can buy and use any device they can get afford and get their hands on. Just because Clark strikes me as a scammer doesn’t mean I always trust conventional medical providers but I won’t be treated by people I don’t trust. Our expensive but only moderately effective medical treatment is a symptom of political corruption IMO but I’m not going to rant on Cort’s quite helpful blog.
No problemo…as the great comedienne Lily Tomlinson said..”we’re all in this together…alone”. Great line.
If I keep posting, especially erroneous multiple posts, Cort will put me on a list and zap me!
Oops! (:<)
Hi,
Have you heard of the clapper? I hear it cures night blindness and it rhymes with zapper. Keeping it light – get it. BTW, well said Steve, in our desperation to feel well in a medical establishment that is not good at treating chronic illnesses, people will look for anything to help. And, possibly because of the placebo effect many of them will feel better. I think it is important that we help our co-suffers avoid things that could make them worse or that only help the pocketbook of the person who sold them.
LOL!
Another thing to keep in mind – people become “expert” in things when they study and research for what may either affect them or someone near and dear. As stated before, there also is a sense of desperation. I personally don’t agree with a lot of what Ms Clark had people do. It’s a little woo woo to me. But I bet it was done and offered in all sincerity. She may have extended her life for many years by doing her treatments. Without them maybe she would have died sooner. We don’t know how long she suffered with cancer and there are some that no type of alternative or Western medicine can save. Many, many of the docs I know go into the field they are in to help themselves and wind up that being the field they stay in. They have ulterior motives that drive their passion for the quest.
I know a lot about many things related to the body. But I haven’t “cured” myself. But that doesn’t mean that what I have to say or knowledge I’ve gained won’t help someone else. And I do feel if I had not changed my life path, I would be dead already. But, I’m not immortal and some day I will die. But it’s trying to get more quality of life in the meantime that is my goal. Not thinking perfect health is attainable. But better quality is.
Issie
Well said Issie. It is pretty clear that if we are going to find treatment for our unconventional illness, we are going to have to be open minded and celebrate the researchers and practitioners who are able to think outside the box and have the courage to act on it. That’s our only hope, I think – some kind of breakthrough, a paradigm shift, will lead to cure.
Thank you. I often feel I am about to be “zapped” by Cort, too….see you on the other side………..
🙂
This article is so helpful, thank you! Has anyone who has tested with high d-lactate ever experienced a burning sensation in their brain? It’s quite frightening but I’m thinking it’s either from the lactate or inflammation.
Noelle
I couldn’t agree more with your theory. My wife and I both have gut altered CFS. Keifer helps us very much. I’ve learned to become an expert on making Keifer, and it has greatly helped us and yes we use raw milk. Not cured us, mind you. Phobics never helped and sometimes made us worse. And we continue to receive acupuncture treatments which are of great help. Thanks for posting the information. With the Keifer and acupuncture,we are able to keep our heads above water and hope for a breakthrough soon.
This explains why my fibro pain goes into remission every time I’m put on a course of antibiotics. I’m immuno-compromised and I can’t imagine ever being able to live without antibiotics and antifungals. The buggars are out to get me!
Probiotics make my symptoms worse and twice have even caused me to go septic.
With my immune system out to lunch, I feel like I’m in a trap that I’ll never puzzle my way out of.
Shay, your story sounds like mine. I was taking doxycycline for years just to stay on my feet. Then I found something that ended the need. It is similar to the protocol presented here, but you will see quickly how it is far superior just by common sense evaluation.
If you have an interest Skype me at username KnowAPR (David Geffeney) or check out our2ndbrain dot com to get a feel for how it works. You’ll be helping other ME/CFS sufferers too someday soon.
“However the lactic acid findings may have been viewed as a consequence and not a cause. The opposite may be more accurate.”
Really it could be both! My belief (and a fair amount of research supports this) is that ME/CFS is based in a dysfunctional feedback loop between multiple organ systems – endocrine/neurologic/immune/metabolic. When one is dysfunctional, it impacts the others, and round and round we go.
You missed likely the DOMINANT player, the Microbiome. There is considerable evidence for many conditions that the severity of the microbiome dysfunction correlates to the severity of symptoms. When the microbiome shifts are reduced, the symptoms become milder.
See https://microbiomeprescription.com/