Recommendations From Surveys

I work off a model. The model suggests things that are likely to help and in many cases did help me (and others).  Surveys help determine what is the best items for the common CFSer. It changes choices from opinion and theory to evidence based recommendations.

According to the survey results to date (Warning sample size are small, please add your own experiences!):

  1. Herbs
  2. Probiotics
  3. Antibiotics

80% or better chance of improvement

  • Take the probiotic General Biotics Equilibrium. 100% improved, no one got worst
  • Get Tinidazole prescribed, again 100% improved,
  • Get a Macrolide antibiotic prescribed,  88% improved, no one got worst
  • Take the herb Neem (make sure enough capsules), 80% improved, no one got worst

No Adverse Effects

Odds below are odds of improvement

  • Get Metronidazole/Flagyl prescribed, 75%
  • L Plantarum 229V probiotics, 50%
  • Herb Thyme 50%
  • Align probiotics, 46%

Odds of getting better than worst

  • Probiotic L.Reuteri  6:1
  • Licorice  5:1
  • Olive Leaf  4:1
  • Oregano 4:1
  • Probiotic Mutaflor  3:1
  • Probiotic Culturelle  3:1
  • Probiotic Yakult  3:1
  • Antibiotic Doxycline  2:1
  • Antibiotic Fluoroquinolene  2:1
  • Antibiotic Minocycline  1.5:1
  • Wormwood  1:1 ( a coin flip!)

AVOID

Odds are less than 1:1, better chance of getting worst than better

  • Herb Cinnamon
  • Herb Ginger
  • Antibiotic Rifampicin
  • Antibiotic Penicillin
  • Antibiotic Sulfonamides

 

What should be in the ideal microbiome test for CFS

This morning I got an email from Cort Johnson(health rising) putting me in contact with someone working with some microbiome testing firms for  microbiome testing with CFS. The issue was discussing what to test for. I thought in addition to an email response, a public post would be wise — in case I have missed any studies that readers may know about.

This is based on current knowledge and studies on PubMed. Additional items may be discovered in time. Low or High is relative to healthy controls in some patient populations. A recent 2016 studies that associated bacteria to symptoms found that gender was a significant factor in the response[2016]. This may be a factor in why CFS impacts females more than males.

This list may bring home to many people that we are not dealing with a single bacteria (infection) but a shift of an entire population, a challenging scenario to treat!

Items Found to be Low

Items Found to be High

As a graphic from this article

40168_2016_171_fig5_html

 Additional Suspect Bacteria

Gluten Sensitivity is common with a large subset of CFS patients. My earlier post, listed the observed shifts there. I  have reproduce the table below:

With Glutten /Celiac Issues
Increase Decrease
Bacteroides Akkermansia muciniphila
Actinobacteria Bacteroides-Prevotella
Atopobium Bifidobacterium
bacterial diversity Bifidobacterium adolescentis
Bacteroides-Prevotella Bifidobacterium bifidum 
Bifidobacterium Bifidobacterium catenulatum
Bifidobacterium adolescentis Bifidobacterium lactis
Bifidobacterium Bifidum Bifidobacterium diversity
Bifidobacterium breve Clostridium coccoides
Bifidobacterium dentium Deinicoccus-Thermus
Clostridium Haemophilus spp.
Clostridium histolyticum Lactobacillus casei
Clostridium lituseburense Lactobacillus paracasei
Enterococcus, Lactobacillus Rhamnosus
Escherichia coli Lactobacillus sakei
Eubacterium rectale-Clostridium coccoides Lactobacillus zeae
Faecalibacterium prausnitzii Lactobacillus 
Firmicutes Lactobacillus-Bifidobacterium/Bacteroides-Prevotellaratio RATIO
Fusobacteria Neisseria spp.
Lactobacillus Porphyromonas
Lactobacillus Brevis Proteobacteria
Lactobacillus curvatus Proteobacteria
Lactobacillus delbrueckii bulgaricus Staphylococcus 
Lactobacillus frementum Staphylococcus-Micrococcus
Lactobacillus gasseri
Lactobacillus paracasei
Lactobacillus plantarium
Lactobacillus Rhamnosus
Lactobacillus Rossiae
Lactobacillus and Bifidobacterium groups greater diversity
Leuconostoc carnosum
Leuconostoc mesenteroides
Methylobacterium spp.
Mycobacterium spp.
Staphylococcus
sulfate-reducing bacteria

.

Survey Results on Antibiotics

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

Severe Herx Significant Worst Worst No Change Better Significant Better Have Not Tried Total Odd of Better Odds of Worst Benefit Odds
Minocycline 0 1 1 1 2 1 7 13 50% 33% 150%
Rifampicin 1 0 1 0 0 0 10 12 0% 100% 0%
Doxycycline 0 1 2 1 2 2 4 12 50% 38% 133%
Macrolides 0 0 0 1 6 2 4 13 89% 0%
Fluoroquinolone 1 1 0 1 2 0 7 12 40% 40% 100%
Metronidazole/Flagyl 0 0 0 1 4 0 7 12 80% 0%
Penicillin/beta-lactam 1 2 2 2 1 0 5 13 13% 63% 20%
Bacitracin 0 0 0 0 0 0 12 12 0% 0%
Sulfonamides 1 0 2 0 0 0 9 12 0% 100% 0%
Tinidazole 0 0 0 0 3 0 9 12 100% 0%

DANGER: Antioxidants and Multiple Chemical Sensitivity

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].”

 

Table 6: New and classical systemic signs and symptoms associated with mercury exposure among MCS patients cohort.

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.

 

Survey Results on Herbs

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

Sep 6 2016 Severe Herx Significant Worst Worst No Change Better Significant Better Have Not Tried Total Odd of Better Odds of Worst Risk Ratio
Thyme 0 0 0 1 0 1 14 16 50% 0% 0.00
Neem 0 0 0 1 4 2 8 15 86% 0% 0.00
Olive Leaf 0 0 1 3 6 0 5 15 60% 10% 0.20
Oregano 0 1 1 0 4 1 8 15 72% 28% 0.50
Tulsi 0 0 2 3 1 2 9 17 38% 25% 0.67
Cinnamon 0 0 1 5 0 0 10 16 0% 17% HUGE
Ginger 0 0 2 4 2 0 8 16 25% 25% 2.00
Licorice 0 0 1 3 5 2 5 15 63% 9% 0.17
Rhubarb 0 0 0 0 0 0 15 15 0% 0% UNKNOWN
Wormwood 1 0 0 1 2 1 10 15 60% 20% 0.50