Chronic Inflammatory Response Syndrome (CIRS) Patient Education:

 

I Overview;

A.   Illness involved include;

a.     Molds or fungi (especially toxic black molds), Volatile Organic Compounds (VOC’s which are produced from fungi, Post-Lyme Syndrome, Chronic Fatigue Syndrome, Chronic Fatigue Syndrome, Fibromyalgia.

b.     Stachybotrys forms Tricothecene toxins

B.    Ciguatera-infection of large predatory salt-water tropical fish (Eg. Barracuda & others, do you eat fish? What kinds? Do you get sicker after eating fish? Causes heat/cold reversal especially around lips, chronic fatigue for >3-6 months, GI, Cardiovascular and skin symptoms)

C.    Cyanobacteria (a form of blue-green algae, exposure to shellfish beds, can occur in cold latitudes in summer when rivers dry up

D.   Gulf War Syndrome

E.    Possibly vaccines such as Gardasil (11-3-53 should avoid), LymeRx (HLA-D4 haplotypes have the most trouble).

F.    Water Damaged Buildings (WDB) are an ongoing problem, discolored carpet, musty smell (VOC’s), stained walls/ceilings.

 

II Historical Risk Factors & Symptoms of CIRS with recommended tests to evaluate them;

A.   Risk Factors in History

a.     Water Damaged Buildings (WDB) most common problem, check ERMI

b.     Post-Lyme Syndrome, LymeRx vaccine (check Lyme Profile, IgM & IgG)

c.     Ciguatera (history of tropical marine fish consumption)

d.     Cyanobacteria (usually but not always tropical fresh water)

e.     Pfiesteria (fish kills, “red tide” exposure

f.      Brown Recluse Spider Bites (rare, has central ulceration)

g.     Infectious mononucleosis (Mono-spot, Mono-screen, Atypical lymphocytes, EBV IgM Nuclear Ag)

h.     Vaccine administration Gardasil, Lyme Rx, Pneumovax (by history)

i.      Fibromyalgia (consider Carnitine deficiency, abnormal fatty acid metabolism, mitochondrial disorders)

j.      XMRV (linked to autism, fibromyalgia, multiple sclerosis, ALS, Parkinson’s, Lupus)

k.     HIV

l.      Coxsackie (RNA Enterovirus)

m.   Enterovirus

n.     Kawasaki’s Disease (Mucocutaneous lymph nodes & coronary granulomas)

o.     Yellow Jacket stings

p.    Anything that causes cytokine release (Eg MMP9)

B.    Symptoms associated with CIRS

a.     Fatigue (MSH, TSH, CBC, VIP, Ciguatera exposure, Mono Screen, Lyme Profile, Epstein-Barr IgM Nuclear Ag, Coxsackie A, Coxsackie B, Enterovirus, mitochondrial disorders, Carnitine deficiency, abnormal fatty acid metabolism, ACTH/Cortisol, etc.)

b.     Weakness

c.     Aches (ANCA)

d.     Cramps (ADH, Osm, Cortisol, ACTH)

e.     Unusual sharp, claw, electrical pains (ADH/Osm/Lactate)

f.      Light sensitivity (MSH)

g.     Red eyes

h.     Blurred vision

i.      Tearing

j.      SOB (ACE, VIP)

k.     Cough (ACE, Pfiesteria)

l.      Sinus symptoms (MARCoNS)

m.   Abdominal pains (AGA, MMP9)

n.     Secretory diarrhea (AGA, Pfiesteria)

o.     Morning stiffness (ESR, MSH)

p.    Arthritis (ESR, MMP9, ANA, RF)

q.     Trouble swallowing

r.     Assimilation problems

s.     Confusion

t.      Disorientation

u.    Impaired mood (MSH)

v.     Impaired appetite (MSH, Leptin)

w.    Sweats/chills; thermoregulation problems

x.     Excessively thirsty (ADH, Osm)

y.     Spontaneous abortions/prior diagnosis of Cardiolipin Antibodies (MSH also do this

z.     Electrical shock sensation when touching skin (ADH, Osm)

aa.  Paresthesias/numbness, tingling (Ciguatera?)

bb.  Altered taste (Ciguatera?)

cc.   Tremor

dd.  Vertigo/dizziness

ee.  Menstrual/Menopause/impaired libido (MSH, sex-steroids)

ff.    Bleeding/bruising (vWF)

gg.  Thrombosis (Cardiolipin panel)

hh. Executive and Cognitive dysfunction (hold the neurocognitive testing, take an exposure history, Pfiesteria provided a great platform to demonstrate when testing in hyperacute and recovery periods were done in cohorts. (VIP, VEGF, MSH)

                                              i.     Decreased recent memory

                                            ii.     Difficulty concentrating

                                          iii.     Word-finding difficulty

                                            iv.     Decreased assimilation of new knowledge

                                              v.     Confusion

                                            vi.     Disorientation in familiar places

                                          vii.     Memory loss (Pfiesteria, MR-Spectroscopy)

                                        viii.     Impaired concentration (Lyme Profile)

 

III Diagnosis of CIRS;

A.    Visual Contrast Sensitivity (VCS)

a.     http://www.survivingmold.com/store1/online-screening-test

b.     The EPA for neurotoxicology studies approved the VCS; VCS showed deficits in Pfiesteria patients that weren’t found anywhere else.

c.     VCS was used as a biomarker, within three days of therapy it had improved, and typically within 2 weeks it normalized.

d.     VCS fell again with re-exposure to the source of the toxin

e.     Re-treatment resulted in restoration to improved or normal VCS

f.      Symptoms were demonstrated to be linked to reduce retinal capillary perfusion

g.     The EPA for neurotoxicology studies approved the VCS; VCS showed deficits in Pfiesteria patients that weren’t found anywhere else.

h.    VCS was used as a biomarker, within three days of therapy it had improved, and typically within 2 weeks it normalized.

i.      VCS fell again with re-exposure to the source of the toxin

j.      Re-treatment resulted in restoration to improved or normal VCS

k.    Symptoms were demonstrated to be linked to reduce retinal capillary perfusion

l.      Can be repeated as often as necessary, to review worsening/improving symptoms and correlate those conditions to the effect of CIRS progression/regression.

B.    Genetic Haplotyping/Sensitivity testing (Labcorp);

a.     1. HLA-DR testing (blood test), about 25% of the population have some form of sensitivity

b.     Provides information on which toxins an individual is sensitive to and also how sensitive they are those toxins.  This test only needs to be done once.

c.     Complex to interpret, the “Rosetta Stone” @ www.survivingmold.com is essential to understand/interpret the test results.

d.     CIRS is a form of autoimmunity “host vs. self”

e.     “Genes load the gun, inflammation pulls the trigger”

C.   Environmental Relative Moldiness Index (ERMI)

a.     Requires a special test kit

b.     available from Mycometrics ERMI Testing; (732) 355-9018

c.     www.mycometrics.com

d.     Instructions are provided with the test

e.     Test determines if mold & which molds are causing problems

f.      Test home, workplace, anywhere time is spent.

g.     Testing is essential so that remediation of contaminated areas can be done

h.    There will be no healing with continued exposure/lack of remediation

D.   API-Staph testing of the sinuses for chronic infection (MARCoNS)

a.     Test kit is only available from http://www.dlmlabs.com/

b.     This is NOT a standard staph or bacterial culture test

c.     Specific organism (MARCoNS) is very slow growing

d.     Lives in sinus biofilm—very hard to treat!

e.     If (+) test (takes at least a month to get results), re-test after treatment to ensure eradication.

f.      There will be no CIRS resolution without eradication.

g.     Treatment involves special nasal spray only available from Hopkinton Compounding Pharmacy http://www.rxandhealth.com with Rifampin 300 mg 2 tabs/d taken by mouth.

h.    Produce numerous toxins that maintain CIRS state

i.      Advised to test for this on initial visit since results take so long.

E.    Initial Labs to be drawn (Abnormals will need to be monitored during therapy)

a.     Test for anti-gliadin antibodies-no grains for 6 months if (+) then re-test, Check Tissue Transglutamase if AGA is (+)

b.     Low Free & Total Testosterone need to be normalized/raised to normal

c.     ADH & Osmolality often elevated (need to rehydrate)

d.     Matrix Metallopeptidase 9 (MMP9), often elevated with CIRS

e.     Vascular Endothelial Growth Factor (VEGF) low with CIRS

f.      Complement factor C4a is often elevated with CIRS

g.     Complement factor C3a (if elevated, bacterial cell membranes are in the circulation)

h.    Transforming Growth Factor Beta-1 (TGF β-1) is elevated in CIRS

i.      Vasoactive Intestinal Peptide (VIP) low in CIRS, can be given by nasal spray under certain conditions

j.      Leptin (elevations linked with obesity, Diabetes)

k.    Melanocyte Stimulating Hormone) often low, produces sleep problems

 

 

IV Treatment of CIRS;

C.    Carefully evaluate patient for history of CIRS risks

A.   FIRST, ALL EXPOSURE MUST BE ELIMINATED.  There will be no resolution without elimination of ALL contact/contamination!!!

B.    ERMI testing and elimination of fungi is the essential initial step

D.   VCS testing & Monitor therapy/disease resolution with VCS testing http://www.survivingmold.com/store1/online-screening-test

E.    Medication Effects;

Cholestyramine, Welchol

Absorbs Gut Toxins

BEG/Rifampin

Kills MARCONS

Actos

Lowers MMP9, TNF, PIE-1, Leptin

Losartan

Lowers TGF β-1

VIP

Stabilizes aromatase, fixes most CIRS issues. Caution!

Erythropoietin Dosing

Increases VEGF, lowers C4a

DHEA

Corrects i Androgens

 

 

 

 

 

 

 

F.    The best & first-line drug is Cholestyramine, 1 packet 4 times daily, if unable to If tolerate, then Welchol 1 packet/d or 2 tablets twice daily

G.   MARCoNS, start BEG spray and Rifampin 300 mg two tabs daily

H.   Summary Table of Treatment;

Abnormality

Symptoms

Intervention

Symptoms suggest CIRS?

 

VCS Test

VCS Abnormal?

 

ERMI Testing; (732) 355-9018

ERMI Abnormal?

 

STOP ALL EXPOSURE! Check HLA DR1/3/4/5 DQ

HLA at risk? Labcorp: ACC 20001604256 HLA DRB, DQ Typing

 

 

Cholestyramine and Nasal Culture for MARCoNS Treat until VCS normalizes

Evaluate Pt. History of CIRS Risks

 

Order Initial Labs considering patient’s risk history

MARCoNS (+)?

 

Begin BEG Nasal Spray & Rifampin 300 mg 2 tabs/d

h MMP9, PAI-1, Leptin, C3a, C4a, & TGF β-1; i MSH, (VEGF & VIP will also be low, respond to different Tx)

C/W CIRS

Actos/Low Amylose Diet (Omega-3’s if Leptin <7)

 h TGF β-1

Causes problems in lungs, autoimmune, Neuro (tremor, learning disability, MS, TM) (need chilled tubes)

Losartan, exp3179 (experimental) or VIP

If h AGA, gluten free and check Tissue Trans-glutaminase

1st manifestation of autoimmunity, grain intolerance

Gluten free X 3 months, then recheck

h MMP9/ADH-Osm/i Androgens can all be lumped together

As noted above/below

Actos/low amylose diet (Omega-3’s if Leptin <7)

ADH/Osm

Thirst, skin shocks

DDAVP nasal/monitor i Na

h Leptin

Obesity, DM

Improves with CIRS Tx , can h VIP, MSH

i MSH

Sleep disturbances, chronic pain, ethesopathy, GI/malabsorption, leaky gut, prolonged illness, resistant Staph, Pituitary/Adrenal axis disruption, Reduced sex hormones, reduced ADH

Due to low Leptin activity on Hypothalamus (Leptin levels may be h)

i VEGF

Poor perfusion/cell starvation, Exercise intolerance

Erythropoietin

h C4a

Hypoperfusion, lactosis, low glutamate/glutamine on MR Spectroscopy

Brain fog, HA, myalgias, thermoregulation, Exercise intolerance

Actos/low amylose diet (Omega-3’s if Leptin <7), VIP

hC3a

 

Actos/low amylose diet (Omega-3’s if Leptin <7), VIP

i Androgens

 

Actos/Low Amylose diet etc.