The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Read these symnptoms - maybe you can identify some of your infections

Discussion in 'Immunological' started by Athene, Feb 4, 2012.

  1. Athene


    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: 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

    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.

    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.

    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.

    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.


    -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


    -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
    - 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.
    Cassandra68 likes this.
  2. Timaca

    Timaca Senior Member

    My understanding is that you cannot tell by symptoms which pathogen you are battling....chronic viral and chronic bacterial infections often give the same symptoms.

    I am someone who apparently has both chronic viral and chronic bacterial infections going on in me (based on antibody titers). It is thought that I did have a chronic Cpn infection since I had high antibody titers as high as the lab measured for IgG and IgA. I did not have many of the symptoms listed in your Cpn list above (eg sinusitus, sore lungs, cough, sore throat, air hunger and MCS). Taking doxy and rifampin has dropped my IgA antibody titer to more normal amounts. And I have felt better, but I'm not yet well. Still battling other pathogens....

    Best, Timaca
  3. runner64


    Interesting. I believe as you do Athene. These causes. Mainstream is so tunnel visioned.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    i think the reason why many of us seem to have different infections is due to immune supression or defiency and then what ever infection we get causes further suppression, a viscious circle.
  5. sianrecovery

    sianrecovery Senior Member

    Manchester UK
    Thanks for posting this Athene - its very helpful to me as I begin the explore this side of ME. I feel certain that many of the answers I'm seeking lie in this direction. It can be intimidating to really take this on board - especially tranmissability, I dont want to give my husband this horrible illness - but I've been here before with the Hep C diagnosis - always best to face up to whats potentially going on rather than hide from it.
  6. Athene


    That's true, but the reason I posted it was because good doctors CAN sift through lot of these symptoms and figure out a lot.
    My doctor gave me a 16 page questionnaire and worked out from that what my infections are. The blood tests came back and it turned out he had missed one, got 4 correct, and included a fifth one which I didn't have. So it is not infallible, but that is a pretty good hit rate. It proves you can work out a lot if you know the symptoms of each individual illness well enough.
    I wanted to try to help those without good doctors (nearly everyone here, I reckon!) to do some of this figuring out themselves.
  7. Athene



    Sorry to hear about the Hep C, Sian, that's nasty.

    I've worried about transmissability, but I think for most of these, the transmissability is a low probability thing. For example, heapsreal mentioned immuno suppression making us more vulnerable to collecting additional infections, that is apparently what happens with the pneumonias. It is supposed to be very hard to catch them unless your immune system is already struggling and if you are in decent health, you can throw them off with a fairly short course of antibiotics. They go chronic and result in CFS in people who already also have other from this list (or not from this list?) Despite my constant contact with my husband he does not have these things.

    Another aspect of transmissability is the insect vectors. I know people who have got lyme from mosquito bites, but the percentage of mosquitoes that actually carry lyme must be tiny, and the likelihood of getting lyme even if you are bitten my a lyme carrying mosquito must also be low, because they hang onto you for so brief a time period. On average 30 percent of ticks carry lyme so a tick bite is already more likely to infect you, and the longer they are on you the higher the probability, but you still hae a two thirds likelihood (OK it varies depending on the area you are in) of NOT getting lyme from a tick bite. You certainly would not get one of these diseases from any animal scratch or bite, I don't know the hit rate for infection.

    So maybe human contact is similar? Most of us haven't infected our partners with whatever we have, so most of these infections cannot be rampantly contagious.
    Lyme disease does spread to sexual partners. I now know four people who have given Lyme to their girlfriends/wives. I don't know any women who have given it to their men - anecdotal, I don't know if it means anything. And this number is out of many dozens of people I've met online who have NOT infected their partner.
  8. bedman


    Nice overview. Since its almost impossible to find out which infections we have i think immune modulators are a better choice.
    Mij, Wayne and SOC like this.
  9. Athene


    Gosh, do you really think it's almost impossible to find out? Are you skint, or just feeling that the glass is half empty these days?
  10. justy

    justy Donate Advocate Demonstrate

    I think it's pretty impossible if you live in the U.K - i wouldnt even know where to begin, then there is the question of money - i would love to have thses tests done, and feel that the doctor doing them knew what thye were talking about.
  11. SOC

    SOC Senior Member

    I'm inclined to agree with bedman that it's "almost impossible" to find out which infections we have. Tests are not necessarily reliable. Many or all of us could even have infections as yet unidentified in the medical world. And then there's those unfortunate folks who live in, say, the UK, where getting the necessary testing is next to impossible. It seems to me that certainty about the infections we have is indeed almost impossible.

    I'm all for testing for all the infections we know about and treating those we can. But helping our immune systems battle all infections, whether or not we can currently identify them, seems like a darned good idea to me.
    Enid likes this.
  12. bedman


    You would need to test the most common 100 infections i think. Thats pricey and you need a motivated doctors who is willing and able to analyse the results.

    Then antibody testing is generally notorious unreliably from my point of you. If your immune system is impaired or a germ knows to hide from the bodys defense then antibodys dont always show up. Then there is the problem that different labs use different tests and so you might be positive in one lab and negative in another.

    And even if an infection shows up then your symptoms could also be caused by another one (i assume we all have multiple infections). pcr sometimes is a good idea - but also very pricey.

    Of course every md will do a test for hiv these days. But i have never been asked by a md if i could have coxiella or legionella.
  13. Wayne

    Wayne Senior Member

    Ashland, Oregon
    Imortance of Fortifying the Immune System

    Hi Bedman,

    I have to agree with you on this one. I personally believe modern science, as much as it likes to pretend that it knows so much, is really in its infancy when it comes to understanding infectious diseases. Besides the things you mention, I've heard that various bacteria and pathogens morph significantly depending on the alkalinity or acidity of its environment. And then there's the whole topic of microscopic parasites that it seems modern medicine knows very little about. And then there's so much more.

    It has always made sense to me to fortify our immune systems as best we can, so we don't have to be overly dependent on various diagnostic tests and/or various treatment modalities. I've heard that in cases where antibiotics are used and/or necessary, in the end, it's always our immune system that has to pack the final punch. It seems antibiotics, whether pharmaceutical or natural, can only do so much.


  14. Athene


    Can coxiella or legionella, or the other 100 infections that you have in mind, cause the symptoms of CFS? If so, could you post some information on them?

    I agree that getting a UK GP to test for these illnesses is difficult and also probably pointless as the tests they have at their disposal are too insensitive. I had myself tested privately. Since my money is not unlimited, I needed to be selective about which tests I did.
    That's why I started this thread. You really can cut down your list from 100-odd candidates to a feasible suspect-list if you pay careful attention to the symptoms. Anyone who goes to the doctor asking to be tested for 100 infections will be branded a hypochondriac. If you talk about infections whose symptoms you do have, you may get more serious attention.

    I sent my blood over to a private lab in Germany which is recognised worldwide as one of the best for the illnesses I listed. Even Americans send their blood there to get second opinions on Lyme disease diagnoses. Their website gives some explanations of why their tests are more sensitive than those done by other labs.

    Of course I do agree that boosting the immune system is essential too. But some infections cannot be beaten by the immune system - all the infections that I listed fit that description. That is why they become chronic. So immune support will only ever be a supporting therapy, it will never cure you.
    I don't want to live with Chronic Fatigue Syndrome. I want to get completely cured. It's been 28 years, I've had enough of this cr@p. That's why I started this thread. I wish someone had told ME this stuff 28 years ago.
    If the rest of you have given up hope of unravelling this mystery, or are dreaming of another XMRV-type revolutionary explanation, then clearly you won't take an interest in this. But please don't come along en masse and trash my thread. I am only trying to take a constructive approach and to give useful information which may HELP others instead of DISCOURAGING them.
  15. Wayne

    Wayne Senior Member

    Ashland, Oregon
    Hi Athene,

    I'm sorry to hear you think your thread here has been trashed. I haven't seen it myself, but I haven't read all the posts and replies carefully. If there's anything I wrote in my post a week ago that you feel fits in the "trashing" category, then I apologize. It was not my intent. I value your posts on this board way to much to ever want to do that.

    Sincerely, Wayne
  16. bedman


    It was neither my purpose to trash your thread nor to discourage anybody. Im really sorry if I did. I just wanted to point out how complex diagnosing infections is. I also dont want to live with this sh**. Thats why i am here.

    An immune system fighting against ANY infection causes fatigue. Thats why you feel tired when you have a flu. Here you can find a list of infectious disease: But of course some of them are tropical or rare so that you can exclude them.

    I disagree on this one. I think the immune system is the key factor when it comes to infections. Thats why some with lyme or tuberculosis never get sick. You can only help your immune system to finish the job. You can never kill every bug in your blood with abx or antivirals. But this is just my opninion. I am no MD, just as sick as everybody else on this board.
  17. Athene


    Thank you Wayne and Bedman for your messages. I appreciate your positive comments.

    True, but no illness has fatigue as its only symptom. They all have other distinguishing symptoms too. That's the whole point of this thread.
    If fatigue is someone's only symptom then they certainly don't have CFS; that doesn't even fit the Simon Wessley criteria for diagnosis let alone the proper Canadian definition. CFS has a long and specific set of symptoms, and the illnesses I listed have symptoms which are very large subsets of these symptoms. In some cases (eg. Lyme) there is complete overlap.

    No, when Lyme or tuberculosis become latent, i.e. not active infections, it is not brought about by the immune system.
    Lyme goes into its dormant forms because of other factors in the body which are hostile to its spirochetal form. They protect themselves in that dormant form until conditions become favourable to their active reproduction again. Lyme enters its cystic form to survive when exposed to antibiotics, starvation, pH changes, hydrogen peroxide, temperature variations or other adverse factors. It converts back to the active form when conditions become favourable.
    In its active form it suppresses natural kiler cell numbers and activity levels and therefore IT controls the activity level or "strength" of the immune system, not the other way round. The form of the borrelia spirochete dictates the form of the human antibody to it, obviously, and this unfortunately happens to be a form that makes the antibodies stick together into large clusters that render them inactive and also indetectible to normal antibody blood tests. This is why the human immune system cannot beat Lyme, ever, no matter how strong it is. You need other chemical factors doing most of the work.
    I am not saying the immune system plays no role, but it IS seriously impaired by this infection and has no chance of doing the job alone.

    I inadvertently made my Lyme go inactive about seven years ago by doing the Atkins diet, which makes the body extremely acidic. Now after a year and a half of trying to fortify my immune system and being beaten by these irritating spirochetes, I am actually wondering whether I might do better to give up on eliminating it from my body and just force it into inactive cysts so I can get on with my life. Trouble is, I cannot face doing the Atkins diet for the rest of my life! And I don't fancy drinking hydrogen peroxide either. Hmm, one to ponder.

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