I have decided to post this because I have gradually become convinced that CFS can be caused by any one of about a dozen, or maybe more, infections. I think most of us with CFS have several of them, rather than just one.
They all have overlapping and similar symptoms. They are nearly all hard to diagnose, producing a very high level of false negatives in blood tests. They all tend to be resistant to antibiotics (some of them are viruses anyway). Some can be spread person to person, some are transmitted by ticks and some by mosquities, fleas and lice, and other insects too.
This is not an exhaustive list. If anyone has more information on any of these they would like to add, or knows of other infections that could be added, please do so. The viral list is extremely scanty, it would be great if anyone knows a good source of additional useful info on these.
I firmly believe that nearly all of us with CFS, if we can identify at least some, or ideally all, of our infections, may be able to cure them or at least know the best way to manage the symptoms. It would certainly help us manage our doctors more effectively!
Most of this data has been copied from a document by Dr. Burrascano here:
http://researchednutritionals.com/F...Advanced Topics in Lyme Disease _12_17_08.pdf
The info on the pneumonias is from other websites.
NB By "human to human blood contact", I mean sharing a toothbrush, razor, contaminated towel, touching someone's dirty sticky plaster, that type of thing. That includes getting bitten by someone or helping them when they are injured and bleeding. It also includes unprotected sex and kissing someone if they are bleeding in their mouth (which many people do for a short while after they brush their teeth, particularly people with some of the following infections).
CLASSIC LYME (Bb infection)-
Ticks or mosquitoes, sexual contact or any other person-to-person blood contact (being bitten by an austistic person for example)
Gradual onset of initial (viral-like) symptoms- this often makes it difficult to pinpoint when the infection began.
Multisystem- almost always, in disseminated stages, involves more than one part or system (i.e. joint pain plus cognitive dysfunction).
Migratory- first a knee will hurt, then over time this may lessen and the elbow or shoulder acts up, and later the joints calm down but headaches worsen.
Stiff joints and loud joint crepitus, especially the neck (Lyme shrug).
Headaches are often nuchal and associated with stiff, painful and crepitant neck.
Afternoon fevers, often unnoticed- most Lyme patients have subnormal temperatures in the AM but rise to 99+ by early to mid-afternoon. No obvious sweats.
Tiredness and limited stamina- often is a strong need to rest or even nap in the afternoon, especially when the flushed face and elevated temperature appears.
4-week cycles- Bb activity, and thus symptoms, wax and wane in a cycle that repeats roughly every four weeks. This cycle, if clear, can guide your treatments.
Slow response to treatment, with an initial symptom flare in most (Herxheimer-like reaction) then improvement over weeks, punctuated by the monthly symptom flares. Likewise, if treatment is ended too soon, an initial period of well-being will gradually, over a few weeks, be replaced by a return of symptoms.
Erythema Migrans rash in 25% to 50%
causes autism in infants and children
BARTONELLA & BARTONELLA-LIKE ORGANISMS-
tick bites, cat scratches and bites, scratches and bites from other animals, probably sexual or other human to human blood contact
Gradual onset of initial illness.
CNS symptoms are out of proportion to the musculoskeletal ones- if a patient has no or minimal joint complaints but is severely encephalopathic (see below), then think of Bartonella/BLO.
Obvious signs of CNS irritability can include muscle twitches, tremors, insomnia, seizures, agitation, anxiety, severe mood swings, outbursts and antisocial behavior.
GI involvement may present as gastritis or abdominal pain (mesenteric adenitis).
Sore soles, especially in the morning.
Tender sub-cutaneous nodules along the extremities, especially outer thigh, shins, and occasionally
along the triceps.
Occasional lymphadenopathy.
Morning fevers, usually around 99. Occasionally light sweats are noted.
Elevated vascular endothelial growth factor (VEGF) occurs in a minority, but the degree of elevation correlates with activity of the infection and may be used to monitor treatment.
Rapid response to treatment changes- often symptoms improve within days after antibiotics are begun, but relapses occur also within days if medication is withdrawn early.
May have papular or linear red rashes (like stretch marks that do not always follow skin planes), especially in those with GI involvement.
BABESIA SPECIES-
Tick bite, 40 cases identified by CDC as being transmitted in blood transfusions (blood not routinely screened for babesia)
Rapid onset of initial illness, often with sudden onset of high fever, severe headaches, sweats and fatigue, thus it is easy to know when infection began.
Obvious sweats, usually at night, but can be day sweats as well.
Air hunger, need to sigh and take a deep breath; dry cough without apparent reason.
Headaches can be severe - dull, global (involves the whole head, described like the head is in a vise).
Fatigue is prominent, does not clear with rest, and is made worse with exercise.
Mental dullness and slowing of reactions and responses.
Dizziness- more like a tippy feeling, and not vertigo or purely orthostasis.
Symptoms cycle rapidly, with flares every four to six days.
Hypercoaguable states are often associated with Babesia infections.
Rarely, splenomegaly
Very severe Lyme Disease can be a clue to Babesia infection, as it will make Lyme symptoms worse
and Lyme treatments less effective.
EHRLICHIA/ANAPLASMA-
tick bites, dog and other animal bites, human blood contact
Rapid onset of initial illness with fever, headache, prostration.
Headaches are sharp, knife-like, and often behind the eyes.
Muscle pain, not joint pain, and can be mild or severe.
Low WBC count, elevated liver enzymes, and (rarely) inclusions seen in the WBCs.
Rarely see diffuse vasculitic rash, including palms and soles (less than 10%).
Rapid response to treatment.
DNA VIRUSES (HHV-6, EBV, CMV)
human contact, either saliva or swimming pools contaminated cups etc or towels, airborne in case of CMV
Persistent fatigue, made worse with exercise.
Sore throat, lymphadenopathy, and other viral-like complaints.
May see elevated liver enzymes and low WBC counts.
Autonomic dysfunction.
MYCOPLASMA PNEUMONIA
airborne
-chest pain (stabbing, aching, lots of different types that often come from the heart, also the rib cage)
-Other heart symptoms like forceful heart beat, sometimes tachycardia or arrhythmia
- feeling freezing cold even in a warm place
-fevers, sometimes night fevers only, sometimes day fevers too
-sweats, either cold sweats or fever
-headache (sub-clinical encephalitis, this means truly awful pain that gets worse if you lie horizontally)
-sore throat, tendency to loose voice if talking a lot of shouting
-cough, often in the morning, dry and not bloody or productive
CHLAMYDIA PNEUMONIA
airborne
-chest pain, constant (like angina) or sudden stabbing pains
-cardiac symptoms like forceful/"thumping" heart beat, sometimes tachycardia or arrhythmia
-chronic sinusitus
-cough and soreness inside lungs; often in the morning, dry and not bloody or productive
-sore throat, tendency to loose voice if talking a lot or shouting
-tightness of breath
-air hunger
-chills
- multiple chemical sensitivity
- secondary porphyria; occurs in acute periods and flares up in luteal phase of menstrual cycle (i.e. the week before menstrual bleeding), and as a result of exposure certain chemicals and other substances; causing extreme fatigue, all-over body pain, intense abdominal pain, sometimes constipation (total absence of bowel movements) or sometimes explosive diarrhoea, tachycardia, peripheral motor deficit and sensory deficit, postural hypotension, confusion, nausea, back pain, chest pain - NB Most of these symptoms are constantly present in chronic chlamydia pneumonia so porphyria attacks may simply be percieved as a general worsening of symptoms.
They all have overlapping and similar symptoms. They are nearly all hard to diagnose, producing a very high level of false negatives in blood tests. They all tend to be resistant to antibiotics (some of them are viruses anyway). Some can be spread person to person, some are transmitted by ticks and some by mosquities, fleas and lice, and other insects too.
This is not an exhaustive list. If anyone has more information on any of these they would like to add, or knows of other infections that could be added, please do so. The viral list is extremely scanty, it would be great if anyone knows a good source of additional useful info on these.
I firmly believe that nearly all of us with CFS, if we can identify at least some, or ideally all, of our infections, may be able to cure them or at least know the best way to manage the symptoms. It would certainly help us manage our doctors more effectively!
Most of this data has been copied from a document by Dr. Burrascano here:
http://researchednutritionals.com/F...Advanced Topics in Lyme Disease _12_17_08.pdf
The info on the pneumonias is from other websites.
NB By "human to human blood contact", I mean sharing a toothbrush, razor, contaminated towel, touching someone's dirty sticky plaster, that type of thing. That includes getting bitten by someone or helping them when they are injured and bleeding. It also includes unprotected sex and kissing someone if they are bleeding in their mouth (which many people do for a short while after they brush their teeth, particularly people with some of the following infections).
CLASSIC LYME (Bb infection)-
Ticks or mosquitoes, sexual contact or any other person-to-person blood contact (being bitten by an austistic person for example)
Gradual onset of initial (viral-like) symptoms- this often makes it difficult to pinpoint when the infection began.
Multisystem- almost always, in disseminated stages, involves more than one part or system (i.e. joint pain plus cognitive dysfunction).
Migratory- first a knee will hurt, then over time this may lessen and the elbow or shoulder acts up, and later the joints calm down but headaches worsen.
Stiff joints and loud joint crepitus, especially the neck (Lyme shrug).
Headaches are often nuchal and associated with stiff, painful and crepitant neck.
Afternoon fevers, often unnoticed- most Lyme patients have subnormal temperatures in the AM but rise to 99+ by early to mid-afternoon. No obvious sweats.
Tiredness and limited stamina- often is a strong need to rest or even nap in the afternoon, especially when the flushed face and elevated temperature appears.
4-week cycles- Bb activity, and thus symptoms, wax and wane in a cycle that repeats roughly every four weeks. This cycle, if clear, can guide your treatments.
Slow response to treatment, with an initial symptom flare in most (Herxheimer-like reaction) then improvement over weeks, punctuated by the monthly symptom flares. Likewise, if treatment is ended too soon, an initial period of well-being will gradually, over a few weeks, be replaced by a return of symptoms.
Erythema Migrans rash in 25% to 50%
causes autism in infants and children
BARTONELLA & BARTONELLA-LIKE ORGANISMS-
tick bites, cat scratches and bites, scratches and bites from other animals, probably sexual or other human to human blood contact
Gradual onset of initial illness.
CNS symptoms are out of proportion to the musculoskeletal ones- if a patient has no or minimal joint complaints but is severely encephalopathic (see below), then think of Bartonella/BLO.
Obvious signs of CNS irritability can include muscle twitches, tremors, insomnia, seizures, agitation, anxiety, severe mood swings, outbursts and antisocial behavior.
GI involvement may present as gastritis or abdominal pain (mesenteric adenitis).
Sore soles, especially in the morning.
Tender sub-cutaneous nodules along the extremities, especially outer thigh, shins, and occasionally
along the triceps.
Occasional lymphadenopathy.
Morning fevers, usually around 99. Occasionally light sweats are noted.
Elevated vascular endothelial growth factor (VEGF) occurs in a minority, but the degree of elevation correlates with activity of the infection and may be used to monitor treatment.
Rapid response to treatment changes- often symptoms improve within days after antibiotics are begun, but relapses occur also within days if medication is withdrawn early.
May have papular or linear red rashes (like stretch marks that do not always follow skin planes), especially in those with GI involvement.
BABESIA SPECIES-
Tick bite, 40 cases identified by CDC as being transmitted in blood transfusions (blood not routinely screened for babesia)
Rapid onset of initial illness, often with sudden onset of high fever, severe headaches, sweats and fatigue, thus it is easy to know when infection began.
Obvious sweats, usually at night, but can be day sweats as well.
Air hunger, need to sigh and take a deep breath; dry cough without apparent reason.
Headaches can be severe - dull, global (involves the whole head, described like the head is in a vise).
Fatigue is prominent, does not clear with rest, and is made worse with exercise.
Mental dullness and slowing of reactions and responses.
Dizziness- more like a tippy feeling, and not vertigo or purely orthostasis.
Symptoms cycle rapidly, with flares every four to six days.
Hypercoaguable states are often associated with Babesia infections.
Rarely, splenomegaly
Very severe Lyme Disease can be a clue to Babesia infection, as it will make Lyme symptoms worse
and Lyme treatments less effective.
EHRLICHIA/ANAPLASMA-
tick bites, dog and other animal bites, human blood contact
Rapid onset of initial illness with fever, headache, prostration.
Headaches are sharp, knife-like, and often behind the eyes.
Muscle pain, not joint pain, and can be mild or severe.
Low WBC count, elevated liver enzymes, and (rarely) inclusions seen in the WBCs.
Rarely see diffuse vasculitic rash, including palms and soles (less than 10%).
Rapid response to treatment.
DNA VIRUSES (HHV-6, EBV, CMV)
human contact, either saliva or swimming pools contaminated cups etc or towels, airborne in case of CMV
Persistent fatigue, made worse with exercise.
Sore throat, lymphadenopathy, and other viral-like complaints.
May see elevated liver enzymes and low WBC counts.
Autonomic dysfunction.
MYCOPLASMA PNEUMONIA
airborne
-chest pain (stabbing, aching, lots of different types that often come from the heart, also the rib cage)
-Other heart symptoms like forceful heart beat, sometimes tachycardia or arrhythmia
- feeling freezing cold even in a warm place
-fevers, sometimes night fevers only, sometimes day fevers too
-sweats, either cold sweats or fever
-headache (sub-clinical encephalitis, this means truly awful pain that gets worse if you lie horizontally)
-sore throat, tendency to loose voice if talking a lot of shouting
-cough, often in the morning, dry and not bloody or productive
CHLAMYDIA PNEUMONIA
airborne
-chest pain, constant (like angina) or sudden stabbing pains
-cardiac symptoms like forceful/"thumping" heart beat, sometimes tachycardia or arrhythmia
-chronic sinusitus
-cough and soreness inside lungs; often in the morning, dry and not bloody or productive
-sore throat, tendency to loose voice if talking a lot or shouting
-tightness of breath
-air hunger
-chills
- multiple chemical sensitivity
- secondary porphyria; occurs in acute periods and flares up in luteal phase of menstrual cycle (i.e. the week before menstrual bleeding), and as a result of exposure certain chemicals and other substances; causing extreme fatigue, all-over body pain, intense abdominal pain, sometimes constipation (total absence of bowel movements) or sometimes explosive diarrhoea, tachycardia, peripheral motor deficit and sensory deficit, postural hypotension, confusion, nausea, back pain, chest pain - NB Most of these symptoms are constantly present in chronic chlamydia pneumonia so porphyria attacks may simply be percieved as a general worsening of symptoms.
