The Frugal Recovery Plan

UPDATED: July 2017. See CFS Diets also.

Also see this update

In the US, the degree of social safety net for people with CFS/ME/FM/IBS is horrible. In a few countries it is “livable” without excessive stress (which would hinder recovery).

This post is for a very long term friend, DanB, and many others who have suffered for years with no or little cash after essentials.

I am going to build up a list of supplements and their average monthly cost for suggested dose — the items are order by monthly cost. Some, like piracetam may be hard to obtain in some countries. I included most items from this “Basics” post and the best  herbs from my earlier post (usually as tea bags), and old post from 2012 is worth reviewing too. Others like chocolate may have risks for some individuals. Prices are usually from Amazon.com

Most medical resources tend to be oblivious to cost and IMHO often misdirects patients money towards high cost / low return items.

Remember:

  • There are no studies comparing their effectiveness against each other — so I assume “equally effective” on a restricted budget
  • I have picked tea bags for many herbs — the cost goes down a lot if you buy bulk and use a tea-ball or strainer. If you can stomach (not too bad a herx) after one box of a tea, go the bulk organic route.
  • Many items should be rotated. These items could also cause a herx in some.
  • Specialize probiotics are a lot more expensive. My wife told her MD that she spends more on probiotics a month than food (and she shops organic!) — it’s true!
  • A smaller dose if fine. Better a little than none. If something seem to work well, consider increasing the dose

Supplement

Daily

Source

Monthly Cost

Cumulative

Cost 

 ROTATE

Vitamin B12

1000 mcg/day

Nature’s Bounty

$3.33

$3.33

 

Alpha Lipoic Acid

300 mg/day

Swanson

$2.50

$5.83

 

Folinic Acid (Active version of Folic Acid – B9)

800 mg/day

Source Naturals MegaFolinic

$1.75

$7.63

 

Vitamin D3

15,000 IU

Doctor’s Best

$2.60

$10.20

 

Zinc Carnosine

30mg/day of zinc

Doctor’s Best

$2.00 to $8.00

$12.20

 

Olive Leaf

1000 mg/day

Nature’s Way

$3.42

$15.46

Magnesium Malate

2000 mg/day

$3.49

$18.95

 

FemFlora probiotic

1/day

Swanson

$3.75

$22.70

 X

Liquorice

1 g/day

“Spezzatina”

$4.35

$27.05

 X

Boswellia

800 mg/day

Swanson

$3.82

$30.87

 X

D-Ribose

1000 mg/day

Source Natural

$4.40

$35.27

 

Miyarisan probiotic

7 / day

Miyarisan

$5.00

$40.27

 X

85% Chocolate

40 g /day

PASCHA Organic Dark Chocolate Baking Chips

$6.49

$46.76

 

Coenzyme Q10

300 mg/day

Doctor’s Best

$6.65

$57.50

 

L. Gasseri probiotic

1/day

Swanson

$7.00

$64.00

 X

Oral Probiotic

1 tablets/day

Swanson 

$7.50

$71.50

 X

Tulsi Tea

1 bag/day

Organic India

$8.33

$73.72

 X

Pau D’Arco Teea

1 bag/day

Alvita

$8.75

$82.47

 X

Neem Tea

1 bag/day

 

$9.00

$91.47

X

Mastic Gum

1 gm/day

Greek Chios

$9.42

$100.89

 X

L. Plantarum probiotic

1/day

Swanson

$9.99

$110.88

X

Thyme Tea

1 bag/day

 

$13.50

$124.38

 X

Culturelle probiotic

1/day

 

$13.88

$138.25

 X

Oregano Tea

1 bag/day

 

$14.40

$152.65

 X

Align Probiotic

1/day

 

$22.39

$175.04

 X

Prescript Assist

1/day

 

$23.00

$198.04

 X

Mutaflor

1/day

 

$42.50

$240.54

Yakult

3/day

 

$54.00

$294.54

 X

Alternatives to consider

  • Benfotiamine 300mg/day – Doctor’s Best – $5.74
  • Methylocbalamin (B12) – 1000mcg/day  – Pure encapsulations = $7.25
    • See link, many have additives that may hurt the gut bacteria

As always, the list should be discussed with your medical professional. On this site, I have attempted to provide links to PubMed studies supporting each of the  items above.

A good medical professional should be able to provide PubMed links to any items that they feel are contraindicated. We want to move to evidence based science for treating CFS and not speculative theories.

Psychoactive Probiotics!

Recently I have come across several articles citing psychoactive bacteria (where the bacteria was from a probiotic).  I thought it would be fun to do a review of such.   Psychobiotics: a novel class of psychotropic[2013]. “…including Bifidobacterium infantis ….Evidence is emerging of benefits in alleviating symptoms of depression and in chronic fatigue syndrome.”

Also see my earlier post on depression and diet

  • “We previously have demonstrated that administration of Lactobacillus rhamnosus (JB-1) to healthy male BALB/c mice, promotes consistent changes in GABA-A and -B receptor sub-types in specific brain regions, accompanied by reductions in anxiety and depression-related behaviors.”[2016] [2014] [2014]
    • “Within minutes of application, JB-1 increased the constitutive single- and multiunit firing rate of the mesenteric nerve bundle, but Lactobacillus salivarius (a negative control) or media alone were ineffective.” [2013]
  • “These results suggest that chronic ingestion of Lactobacillus plantarum strain PS128 could ameliorate anxiety- and depression-like behaviors and modulate neurochemicals related to affective disorders.Thus PS128 shows psychotropic properties and has great potential for improving stress-related symptoms.” [2015]
    • “PS128 is safe and could induce changes in emotional behaviors…These findings suggest that daily intake of the L. plantarum strain PS128 could improve anxiety-like behaviors and may be helpful in ameliorating neuropsychiatric disorders.”[2016]
  • “One study showed improved mood in healthy volunteers following 3-week consumption of a probiotic-containing milk drink that contained Lactobacillus casei Shirota” [2007]
    • “administration of the probiotic, L. casei Shirota, decreased anxiety in patients with chronic fatigue syndrome.”[2009]
  • L. helveticus and B. longum, for 30 days demonstrated significantly less psychological distress,” [2011]

The negatives

  • “higher anxiety scores in IBS patients and healthy controls were associated with lower fecal microbial diversity supporting a link between microbiota and psychological state” [2014]
  • “Gut microbiota alterations have also been reported in a substantial number of children with autism, particularly citing a 10-fold increase in Clostridium numbers as well as greater diversity” [2011]
  • Alistipes, a genus in the phylum of Bacteroidetes was overrepresented in depressed patients.”[2012]
    • Alistipes is also overrepresented in chronic fatigue syndrome [2013 Kenny De Meirleir]and in irritable bowel syndrome (IBS) [2011]
    • “it has been shown that Alistipes levels and other gut microbiota can be modified through dietary intervention”[2014] i.e. less meat.
      • soluble dietary fiber (soluble resistant maltodextrin) may decrease [2015] – likely any significant (MAJOR) increase in fiber will help.
    • Bacillus subtilis may increase Alistipes [2015]
    • “the three β-lactam antibiotics(Ceftriaxone Sodium, Cefoperazone/Sulbactam and meropenem), showed consistency in inhibiting Papillibacter, Prevotella and Alistipes while inducing massive growth of Clostridium.”[2015]

Bottom Line

Above we found that there is evidence that one common probiotic (Bacillus Subtilis) may actually make depression worst! Reducing meat and increase fiber in a major shift may also improve depression. All of the Lactobacillus cited above are acceptable for CFS (but L. helveticus is questionable).

What is expected in a healthy young microbiome?

We often talk about fixing and restoring the microbiome. What does that actually mean?

I believe the ideal microbiome would be one seen in healthy 20 year olds. There are actually some studies of those (and younger individuals) too. “when an individual’s large intestinal gut microbiota has reached its stable climax community, it appears to be stable for a significant period of time as Faith and colleagues showed (200). This study followed 37 health adults and reported that after 5 years 60% of the original strains were still present.” [2015] In other words, about 8% of the strains disappear each year.

Furthermore, centenarians had a different and less diverse microbiota than adults and younger elderly people.” [2015] – this suggests that a supplementation of a very diverse collection of probiotic species and families may slow aging. see The human intestinal microbiome at extreme ages of life. Dietary intervention as a way to counteract alterations[2014].

The article Role of the normal gut microbiota[2015] illustrates the multiple regions of the microbiome and how they are different.

 

The study below is on some healthy individuals in their 20’s.

Bifidobacterium

“B. longum and B. pseudocatenulatum, which are detected at levels of 10(7) CFU/g (wet) in samples and the detection rates are 90.48% [of study individuals] and 85.71% [of study individual] respectively. In addition, B. adolescentis, B. bifidum, B. infantis and B. thermacidophium have also been found.” [2005]

Lactobacillus

“L. mucosae, L. fermentum, L. salivarius, L. ruminis [Catenabacterium catenaforme], L. gasseri and L. plantarum are isolated from the stools. L. mucosae (3.68 log10 CFU/g (wet), detection rate 71.43%) and L. fermentum (3.97 log10 CFU/g (wet), detection rate 52.38%) are two dominant species of Lactobacillus.” [2005]

So, L. Acidophilus is NOT found!!!!!! It is found only in certain cultures/life styles/diets.

Infants Differences

“It has been reported that a ‘geographical gradient’ exists in the European infant microbiota where infants from Northern areas have higher levels of Bifidobacterium spp. and some Clostridium spp. and Atopobium spp., while Southern infants had a higher abundance of Eubacteria, Lactobacillus, and Bacteroides (50). Significant differences between the microbiota of Finnish and German infants (57) or between that of Estonian and Swedish ones (58) have been also reported.” [2015]

Malawian infants had higher counts of lactobacilli than their Finnish counterparts (7.45 log cells/g vs 6.86 log cells/g, P < 0.001, respectively) and the Lactobacillus community was richer and more diverse in the Malawian infants. Leuconostoc citreum and Weissella confusa were the predominant species in both study groups… Moreover,

  • Lactobacillus ruminis(59.1% vs 0.0%, P < 0.001),
  • Lactobacillus gasseri (38.6% vs 9.7%, P = 0.004;),
  • Lactobacillus acidophilus (29.5% vs 0.0%, P < 0.001;), and
  • Lactobacillus mucosae (22.7% vs 3.2%, P = 0.017, ) were detected more often in the Malawian infants .
  • Lactobacillus casei group species, however, were only detected in the Finnish infants.” [2015]

So Lactobacillus acidophilus is missing from the western infant gut (0.0%)!! So where do we get a Lactobacillus ruminis probiotic????

Bifidobacteria were dominant at 6 months of age in all of the infants, although in greater proportions in Malawian (70.8%) than in Finnish infants (46.8%; P<0.001). Additional distinctions in bacterial group composition comprised

  • Bacteroides-Prevotella (17.2% vs 4.7%; P<0.001) and
  • Clostridium histolyticum (4.4% vs 2.8%; P=0.01), respectively. The species
  • Bifidobacterium adolescentis, Clostridium perfringens, and Staphylococcus aureus were absent in Malawian but detected in Finnish infants.” [2012]

Bottom Line

We really do not know what a “restored microbiome” should be.  Diet impacts the microbiome. Environment impacts the microbiome. I suspect it should include significant of:

  • B. longum – probiotic exists
  • B. pseudocatenulatum – unknown
  • L. mucosae, – unknown
  • L. fermentum, – unknown
  • L. salivarius – in a mixture L.Plantarum/Rhamnosus/Salivari 100c (F) Allergy Research
  • L. ruminis – unknown
  • L. casei – multiple probiotics for western life style.
  • L. acidophilus – most common probiotic
  • L. gasseri – multiple probiotics
  • L. Reuteri – multiple probiotics
  • L. plantarum – multiple probiotis

Lactobacillus Gasseri

L. Gasseri is one of the species in BIFIDO|MAXIMUS, a Histamine-Free and D-Lactate Free Probiotic [20 Billion CFU of L. gasseri] which attempts to address two subsets of CFS patients. It is also available as a single species from Swanson [3 Billion CFU]. Neither indicated the strain(s).

“In humans, L. gasseri elicits various health benefits through its antimicrobial activity, bacteriocin production, and immunomodulation of the innate and adaptive systems. The genomic and empirical evidence supporting use of L. gasseri in probiotic applications is substantiated by clinical trial data displaying maintenance of vaginal homeostasis, mitigation of Helicobacter pylori infection, and amelioration of diarrhea.” [2013]

Role in Pregnancy and New Borns

It appears to be one of the species that appears to be transfer to new borns and dominate the vagina during pregnancy. “L. crispatus, L. gasseri and/or L. jensenii were present…  but as their estrogen levels rose, their flora composition altered, to become dominated by one of the three species most common in a normal, healthy vagina.”[2008]

Allergy (i.e. Histamines)

Anti-Infection

Additional Features

Bottom Line

This lactibacillus species is definitely one that should be considered in the rotation of probiotics. Speculation: because of its involvement in female reproduction, females may be far more sensitive to it’s reduction than males, thus accounting for the difference of incidence between man and women.

 

Dealing with the Herx

In my prior posts, there were probiotics and herbs that may cause a mild, moderate or severe Jarisch-Herxheimer reaction.

Model

I prefer to start from a model instead of random actions or incidental reports from various people. A model leads to alternatives.

With the model that the herx is largely the dumping of inflammatory toxins into the system. These toxins decreases blood flow:

  • by swelling blood vessels,
  • reducing the flow of oxygen and blood to the brain

This suggests several approaches:

  • vascular dialators (see this Wiki article for references)
    • niacin (as nicotinic acid only) – the FLUSHING TYPE – fast acting
    • L-arginine
    • heparin
  • Increasing blood flow /oxygen delivery
    • Anticoagulants:
    • Hot baths (with Epson salts) or infrared sauna
    • Increasing fluids – done with electrolyte mixtures such as Recuperation. Avoid those with sugars added.
  • Anti-inflammatories -these may slow down the rate of toxins being dumped into the blood systems as well as reducing inflammation.
  • Some herx in CFS appears to be associated with histamine
    • Anti-histamine such as Benadryl. The problem is that many anti-histamines can cause brain fog similar to herx, so it becomes unclear it is increasing or decreasing.

I skipped anti-inflammatories and anti-coagulants that have a significant risk of causing additional herx. For example. biofilm breakers.

Of course, the last alternative is to decrease or stop what is causing the herx. A herx is not a required phrase for getting better.  A severe “herx” that does not fade out within 24 hours of pausing a supplement/antibiotic may be an adverse reaction. See comments on this post for a case report. If you are unsure, see your medical professional — there are tests that may clarify what you are experiencing.

Differentiating between a Herxheimer, a flare and an allergic reaction to the drug

“Laboratory tests can help differentiate between a worsening of disease (RA flare), a Herxheimer reaction to microbial toxins, and an allergic reaction to medication:

  1. White Blood Count will elevate in a Herxheimer and lower in a flare.
  2. A Herxheimer will also exhibit a coincidental elevation of SED rate, gamma globulin and total globulin ,and a fall in serum albumin and hematocrit. Patients who exhibit this flare reaction accompanied by anemia, depression of serum albumin, elevated total globulin and gamma globulin are probably reflecting a more intense reaction pattern to anti-L substances than in hematologically mild cases.
  3. A marked increase in eosinophils (for instance about 30%) is an indication of an allergic reaction to the drug.” [source]

Stopping and working up to a comfortable level is ideal. However, with probiotics, the time for the herx to stop may be longer (days) because some may take up residence.

I did a longer write up on Herx that may be downloaded as a pdf.