The response has been out for a week, 8 results and sufficient to report early results (I will update the page once a week). I have updated the survey results on Probiotics. One probiotic had no adverse effects reported and everyone reported improvement.

The clear winner is Macrolides with 83% improving and the most people who have tried it. Tinidazole has 100% improving but only 1/3 as many reports. Second is Metronidazole/Flagyl with 75%, then Doxycycline with 67% and minocycline with 40% and Fluoroquinolone with 33%.. All of these are part of Cecile Jadin’s protocol (which originated in the 1950’s for a similar condition).

The worst ones are Rifampicin and Sulfonamides (sulphur antibiotics) with only negative results. Penicillin have only one positive report to many negative reports.

You can contribute your experience to the survey by clicking here.

As of Nov 23, 2016

A reader contacted me because her naturopath recommended NAC to help with MCS. She started having adverse reactions from it and contacted me.

On ideological grounds, the naturopath’s suggestions was reasonable. MCS tend to have high level of mercury and NAC is often used to remove it. Again IDEOLOGICAL.

Researching for published clinical experience of NAC being used for MCS, I found (to my surprise — I expected to find nothing) a beautiful study here from 2013 in

Oxidative Medicine and Cellular Longevity
Volume 2013 (2013)

: (IMHO, the naturopath should have known if she kept current on the literature)

“Our observations raise the possibility that treatment with vitamins, minerals, and antioxidants did not ameliorate the symptoms in most patients with MCS. In particular, we suggest that important clinical adverse events associated with oral supplements should be carefully evaluated when these nonspecific supportive therapies are prescribed to persons who have a clear history of mercury amalgam exposure, for example, ascorbic acid and thiol (sulfur derivatives) agents. Vitamin C (ascorbic acid) was not able to mobilize and remove mercury from tissues in both human and animal studies [56, 57]. Rather, some antioxidants worsen the retention kinetics of mercury in patients exposed to dental amalgam. 5 of 41 (12.2 percent) patients received secondary supportive therapy: 3 patients received selenium, 1 patient received alpha lipoic acid (ALA), and 1 received N-acetylcysteine (NAC). Adverse health effects occurred in 3 of 5 (60 percent). In two (2) of them, supplementation with selenium has been implicated in an elevation of the levels of serum antinuclear antibodies (ANAs) and one patient developed severe major aphthous stomatitis, whereas panic attacks were associated with the oral administration of alpha lipoic acid (ALA). 7 of 10 patients who have received intravenous (iv) administration of reduced glutathione (GSH) by continuous infusion, 5 of 7 (70 percent) patients had various adverse events while receiving GSH, including urticaria, asthma attacks, worsening of MCS symptoms, and cheilitis.”   — ouch!!!

• ” The prevalence of metal immune hypersensitivity in a subset of 26 patients was 92.3 percent.”
• “Our data show an increased prevalence of metal allergy and elevation of mercury levels in bioindicators among patients with MCS.”
• “Professionals usually recommended supplements as a supportive therapy to reduce mercury burden. In theory, these supplements would bind and detoxify mercury that can be deposited in parenchymal pattern, reestablishing and maintaining the hepatic glutathione stores (i.e., N-acetylcysteine (NAC), selenium, and reduced glutathione, GSH). By contrast, there is no documented evidence either in animal model or in outcome studies that support therapy with supplements is able to remove mercury from human tissues [56 – 2008].”
• “This may elucidate why monitoring blood concentrations of total mercury is of questionable clinical relevance as indicator of tissues body burden of mercury released from dental amalgam in humans. Consistently, preclinical studies have suggested direct evidence that low circulating mercury levels could reflect mercury disposition and redistribution to target organs, at least in adult sheep model [68]. Hence, concentrations of mercury in blood and urine may underestimate retention toxicity of mercury in the tissues and organs. In other words, there is the possibility that measurements of mercury in blood and urine do not fully reflect the actual mercury amalgam burden in humans [59].”

Signs

• (i) Angioedema
• (iii) Cervical and axillary lymph nodes swollen
• (iii) Dermographism
• (iv) Enlargement of thyroid
• (v) Eyelid myokymia (eyelid tremors)
• (vi) Gastrointestinal malabsorption
• (vii) Gingivitis – Stomatitis
• (viii) Lichenoid contact stomatitis
• (ix) Low-grade fever (fever of unknown origin—FUO)
• (x) Muscle atrophy
• (xi) Muscle fasciculations
• (xii) Non-allergic rhinitis/vasomotor rhinitis-like
• (xiii) Peripheral neuropathy
• (xiv) Salmon-colored and/or pink’ rash
• (xv) Sialorrhea (hypersalivation)
• (xvi) Spasms
• (xvii) Systemic contact dermatitis
• (xviii) Tremors (upper limb, hands, fingers, face, eyelids,  and lips)
• (xix) Urticaria
• (xx) White matter hyperintensity (by brain MRI)
• (xxi) Xerostomia (dry mouth)

Symptoms

• (i) Abdominal cramps
• (ii) Anorexia
• (iii) Atypical facial pain (persistent idiopathic facial pain)
• (iv) Burning mouth syndrome (BMS)
• (v) Burning pain (neuropathic)
• (vi) Chemical odor intolerance
• (vii) Chest pain (anterior or posterior, on the left side)
• (viii) Confusion
• (ix) Depression
• (x) Dysesthesia
• (xi) Fatigue
• (xii) Flu-like symptoms
• (xiii) Headache
• (xiv) Insomnia
• (xv) Intestinal movement disorders
• (xvi) Intolerance to odors
• (xvii) Itching (neuropathic)
• (xviii) Muscle weakness
• (xix) Nausea
• (xx) Noise sensitivity
• (xxi) Paresthesia
• (xxii) Photophobia
• (xxiii) Recurrent infections
• (xxiv) Short-term memory disturbances
• (xxv) Tachycardia
• (xxvi) Thermal regulation disorders (low cold tolerance)
• (xxvii) Trigeminal neuralgia
• (xxviii) Vertigo

The use of herbs is also suspect..

“Concentration level of iron in blood and urine before and after treatment using the herbal medicine, widely used in Europe, is analyzed. Determination of Iron concentration in blood and urine was calculated … The analysis shows that the concentration of iron in blood and urine samples in both groups increased in some volunteers instead of decrease.” [2013]

BOTTOM LINE

Professional suggestions are without any published evidence supporting their typical recommendations and this study documented significant adverse risk. Professional are failing in “Do no harm” with MCS parients 😦

• There appear to be some bacteria that can remove mercury [2016]
• Grilling fish increases mercury intake [2013]

No published evidence, but…

• I know one MCS person that can moderate a MCS attack by Olestra Chips. Some forms of mercury will dissolve in olestra [2010] .  There are no studies on the use of olestra to reduce mercury content.

The response exceed 10, so sufficient to report early results (I will update the page once a week). I have updated the survey results on Probiotics. One probiotic had no adverse effects reported and everyone reported improvement.

With more reports in we have:

1. Neem and Oregano with 80% improving
2. Olive Leaf and Licorice with 56% improving
3. Thyme with 50% improving
4. Wormwood and Tulsi with 33% improving

Ginger continues to be poor. 11% had adverse effects and only 25% of those that did not have adverse effects reported improvement.

If you have not done the survey and wish to, click here.

You want to start with items that are the lowest risk and best benefit

As On Nov 23,2016

A Facebook reader posted:

“I’m wondering your thoughts on Turmeric/Curcumin in relation to the current model. I’ve searched your site and found a few older posts about its benefits, but noticed it wasn’t included in your herbal antibiotic chart. Curcumin helps me a lot with pain and since I’m in a fibro-flare right now, I’m back on it multiple times per day. But it seems to make me more and more tired the longer I take it. This is a clear pattern, probably the 10th time I’ve taken it for pain. My thought was maybe it has a negative impact on e.coli or Lactobacillus or some other species I might be low in. I couldn’t find anything specific on PubMed.”

Rotate, Rotate, Rotate

If something is anti-infection, you need to rotate the use of it. Say that it is 95% effective against a specific family, that means 5% of a bacteria family can resist it.  When the 95% dies, the remaining 5% will slowly grow to take it place.  Curcumin or whatever — will no longer be effective against that family because your eventual population will likely be 95% resistant. The bacteria quickly learns that the genes for resistance (although expensive to keep going) is preferred.

There are several studies that found that pulsing antibiotics was more effective than continuous application. Bacteria are adaptive, not machines.

Research Update on Curcumin

Image from http://www.hindawi.com/journals/bmri/2014/186864/

• showed a marked inhibition of the growth of Staph. aureus. [1949]
• extended antimicrobial activity of curcumin and safety property even at high doses (12 g/day) assessed by clinical trials in human [2014]
  • …with 45% and 30% inhibition rates against Staphylococcus aureus and Escherichia coli
  • demonstrated the MIC (minimum inhibitory concentration) …. against
    • S. epidermis ATCC 12228,
    • Staph. aureus ATCC 25923,
    • Klebsiella pneumoniae ATCC 10031, and
    • E. coli ATCC 25922 [15].
  • antibacterial effect against 13 bacteria, namely,
    • Vibrio harveyi,
    • V. alginolyticus,
    • V. vulnificus,
    • V. parahaemolyticus,
    • V. cholerae,
    • Bacillus subtilis,
    • B. cereus,
    • Aeromonas hydrophila,
    • Streptococcus agalactiae,
    • Staph. aureus,
    • Staph. intermedius,
    • Staph. epidermidis, and
    • Edwardsiella tarda.
  • Turmeric oil as a byproduct from curcumin manufacture also was found effective against
    • B. subtilis,
    • B. coagulans,
    • B. cereus,
    • Staph. aureus,
    • E. coli, and
    • P. aeruginosa [19].
  • showed significant antibacterial activity …against 65 clinical isolates of Helicobacter pylori [41].
  • It has been demonstrated that curcumin as a plant derivative has a wide range of antiviral activity against different viruses…including parainfluenza virus type 3 (PIV-3), feline infectious peritonitis virus (FIPV), vesicular stomatitis virus (VSV), herpes simplex virus (HSV), flock house virus (FHV), and respiratory syncytial virus (RSV)
  • The methanol extract of turmeric demonstrated antifungal activity against Cryptococcus neoformans and Candida albicans with MIC values of 128 and 256 μg/mL, respectively [16].
  • Study of curcumin against 14 strains of Candida including 4 ATCC strains and 10 clinical isolates showed that curcumin is a potent fungicide compound against Candida species
  • S. mutans and L. acidophilus were susceptible to curcumin in the presence of blue light.[2014]

Bottle Line

The reader is correct that “My thought was maybe it has a negative impact on e.coli or Lactobacillus”. Taking it knocks down the symptom causing bacteria but to take it continuously runs multiple risks:

• Resistance being developed by the symptom causing bacteria
• Reduction of good bacteria that was already low….

Via facebook, I shared a link to a survey on the 10 best candidate probiotics for ME/CFS/IBS. I expect the response to vary from person to person. An example is below in an email thread from a reader. There is no magic formula, just experiments with better than average odds that are worth trying:

Reader:

” I’ve had a terrible couple of weeks herxing on Miyarisan and Symbioflor 2, plus everyone has had a terrible head cold…
I think I might have a coagulation issue after taking too much Symbioflor 2, I have a puffy face in the morning, mental fog, very thirsty, bruising easily, very tired and I feel cold in my hands and feet – does that sound like it might be? I’ve stopped all probiotics but wasn’t sure what I should do next. Fibrinolytics? Antibiotic herbs? I am too foggy to read about it. 
The worst part is, when I came off Miyarisan I was feeling on top of the world and now I’m back in the dumps again!! “

Ken:

• Switch back to miyarisan ASAP. You are the third person to indicate feeling bad from Symbioflor-2.

Reader:

• “Within 24 hours back on Miyarisan, my swelling went down, energy returned and the fog lifted. Thanks for the tip. I feel great again. I can get used to this! :)”

Note on the why of the above suggestion, Miyarisan suppresses E.Coli, hence should not be taken together. If a E.Coli probiotic takes up residence and producing too much herx — then Miyarisan (or general Lactobacillus probiotics) will suppress the E.Coli/

Survey Results

Also see Herb Results

The number of responses is low to use reliably. I am posting them to encourage others to do the survey. The best odds from this data is (in descending order – NO REPORTED NEGATIVE IMPACTS)

• GB Equilibrium (No negative effect, 100% saw improvement),
• L. Plantarum 229V (50% improved)
• L.Reuteri (50% improved),
• Align (46% improved),
• Culturelle (40% improved)

Some negative risk but good improvement profile

• Miyarisan (36% odds of having issues, if no issue – 55% chance of improving!)
• Mutaflor (22% odds of having issues, if no issue – 67% chance of improving!)
• Symbioflor-2 (27% odds of having issues, if no issue – 55% chance of improving!)

Go to survey and then be shown the results.

As of Nov 23,2016