Discussion in 'Lyme Disease Archives' started by victoria, Aug 14, 2008.

  1. victoria

    victoria New Member

    I think 'Lyme disease" is becoming sort of a catch-all name for all tickborne diseases.... the thing is, it is more likely than not that if one has lyme, one has other infections... and also very likely that you could have 1 or more other infections without lyme, which the Western Blot will not catch at all.

    Here is a list from
    that has live links to reading about these other infections:

    Babesiosis (Babesia, Piroplasmosis, Nantucket Fever)

    Bartonella (Cat Scratch Disease, CSD)

    Brucellosis (Brucella, Neurobrucellosis, and Malta, Undulant, Rock, Cyprus, or Gibraltar fever)

    Colorado Tick Fever (CTF, Mountain Tick Fever, Mountain Fever, American Mountain Fever)

    Ehrlichiosis (Ehrlichia)

    Heartwater Disease (Cowdriosis)

    Q Fever (Query fever): Chronic Q fever, which often presents as culture-negative endocarditis, is difficult to treat and can be fatal. Recent studies in patients with chronic Q fever in which polymerase chain reaction (PCR) was used to detect C burnetii DNA revealed evidence that the organism persists in human liver, blood monocytes, and most commonly, bone marrow.

    Rocky Mountain Spotted Fever (RMSF, Sao Paulo Fever, Spotted Fever, Tick Typhus)

    Tick-Borne Rickettsia from the Spotted Fever Group - other than RMSF

    Tick-Borne Rickettsia from the Typhus Group

    Tick-Borne Encephalitis (TBE)

    Tick-Borne Diseases in the Tick-Borne Encephalitis Virus Group - other than TBE Virus

    Tick-Borne Relapsing Fever (Borrelia hermsii, B. turicata/turicatae, B. parkeri)

    Tick-Borne Relapsing Fever - other than that caused by B. hermsii, B. turicata/turicatae, B. parkeri

    Tick Paralysis

    Tularemia (Rabbit Fever, Francis' Disease, Deer-Fly Fever, O'Hara Disease)

    West Nile Virus (West Nile Encephalitis)

    Chlamydia Pn.

    Mycoplasma Pn.

    Powassan Virus Outbreak

    Can Ticks Spread Hepatitis C Virus?

    Epstein Barr & Lyme

    Mysterious Skin Disease


    and other interesting topics like:

    Mycoplasma Experiments

    Encephalitis-like virus

    Deer Tick Virus Transmission

  2. Daisys

    Daisys Member

    I've seen TBDs used to denote tick-borne diseases.

    But, you're right. The lyme community knows that when someone says they have lyme disease, they probably have other infections, so it's sort of a shorthand way of expressing it.

    I'll tell someone I have lyme disease, and sometimes add: and some other infections that came along with it. Or, lyme, and also EBV and babesia. It depends on the person-- how much they know about lyme disease.

  3. boscosmom

    boscosmom New Member

    that people are dxed with lyme and have other diseases or they have both lyme and these diseases?
    i just feel confused as always.
    i have chlamadia pn.
    ebv and lyme although, i only had 31 and 41 positive and a positive IFA.
    i worry i am not as positive as i should be...
    well, i just worry a lot...ty all, chris
  4. boscosmom

    boscosmom New Member

    clearifying that.
    i do see a llmd...i am on doxy...
    i just worry about my symptoms still...
    i will start the iv in a few weeks.
    that internal tremor/vibration really scares me especially that it will occur in my face too.
    i was neg. on babesia through quest...but, they are not reliable apparently.
    my stomach has been much better on the doxy actually.
    i had a lot of vomiting and diarhea/constipation b/f.
    i just feel so weird: feel sort of crooked b/c my back is so tight, my head pressure is horrible sometimes, i even have to think to speak and walk sometimes...
    my vision will dimm...my hands will tighten up.
    all this just scares the daylights out of me espciallly with a 3 and 5 yr.old to take care of.
    ty again. chris
  5. boscosmom

    boscosmom New Member

    i've been on doxy for about a month...yes, i have MIRACLE days then the weird stuff and i FREAK out.
    i have had that freeze up feeling...like why am i just standing here and not moving forward fast enough...or i just stare and can't come out of it to move...so weird.

    i have this weird thing where if feels like my lips won't keep up with my words...hard to describe...my lips and gums are numb often too..

    just so many weird things...i feel off balance a lot to or like i am being pulled to the right...and i am tighter on the left.

    my hub makes me do the sobriety test when i say i am off balance and i can do it...also "tree pose" ....i freak out and start testing myself.

    every day is a new experience.

    i just remember 3.5 years ago being so tired and felt so sick and having such headaches and night sweats...at that time we had the whitefooted mice in our beautiful denver home...and i just had a baby so they thought it was lupus or ms...then the neuro stuff started (dimming vision, pain, delay feeling in left leg, off balance, tingling in hands feet and face)...and they tested for ms again...i was neg.

    i had every neuro test you can think of.

    still no one can tell i have that delay feeling in my left leg...i even try to run through all my pain...it feels like every bone is rubing against the next...and i feel so twisted up...even my face has this horrible pulling sensation...i'll swear i'm not talking out of the left side of my mouth or my left eye isn't blinking but, IT IS...when i look in the mirror...

    apparently, i LOOK normal so my symptoms are just that to others....my hub and llmd and fam and friends definitely support me...but, they want me to stop worrying about parkinsons, ms, etc...but, it is so hard especially when my lyme tests were totally positive (but, i wasn't tested until 3 years after neuro symptoms).

    what do you think?
    where are you from?
    we don't have a lyme support group here which stinks.

    thanks so much again, chris...
    could we exchange emails?
  6. Daisys

    Daisys Member

    Yes, we're a small group here, but right next door is the CFS/FM group, and many of them will be finding out they have lyme disease sooner or later, if they keep seeking answers.

    When I go to lyme forums, I see that many posters were diagnosed with CFS and/or FM before finding out they had lyme all along. I count myself as one, since I posted for years on this CFS/FM board before finding out I have lyme and babesia. EBV too, but I think that's gone now.

    I'm not saying all of them have lyme disease. I think some people even have been diagnosed with FM and CFS by their lyme literate doctors, so they are separate illnesses.
  7. boscosmom

    boscosmom New Member

    to say i WASN"T totally positive according to cdc standards that is.
    i only had a positive IFA and bands 31 and 41 on WB

    thanks so much for the support...

    sincerely, chris
  8. victoria

    victoria New Member

    full article at above, below are some excerpts from the article:
    (all cap emphasis are mine)


    ...many patients don't know that a Lyme disease diagnosis also comes with a risk for developing one or more co-infections ... that can worsen the severity or the duration of Lyme symptoms.

    What's more, these co-infections must be independently diagnosed and treated with entirely different medications and protocols than the primary Lyme infection.

    Dr. Daniel Cameron, president of ILADS, adds that "the ticks that transmit the bacteria that causes Lyme disease also carry numerous other pathogens that can complicate the treatment and management of the primary infection and lead to a longer-lasting, more devastating illness."

    Dr Cameron encourages new patients to request testing for the three most common Lyme disease co-infections: Babesiosis and Erlichiosis (HME or HCE), parasitic infections, and Bartonellosis, an infection caused by bacteria called Bartonella.

    Similar to the difficulty with Lyme diagnosis and treatment, Dr Cameron points out that the symptoms of these Lyme co-infections are also nonspecific, such as fever, chills, headache and malaise, and the diagnostic procedures often rely on a series of negative tests, since the parasites and bacteria that cause the infections are detectable in the bloodstream for only a short period of time.

    "This is why it is so critical for patients to have a co-infection workup completed at the time of their initial diagnosis, when the likelihood of an accurate diagnosis is at its highest," Dr. Cameron said.

    The National Institutes of Health also (notes) that co-infections have the potential to make Lyme diagnosis more difficult and to weaken patients' immune systems, compromising their ability to fight off the initial Lyme infection.

    (The) 3 most common tick-borne co-infections:

    BABESIOSIS is caused by a parasite that infects red blood cells. Babesia microti is believed to be the most common piroplasm infecting humans, but scientists have identified MORE THAN 20 piroplasms carried by ticks.

    Symptoms are similar to those of Lyme, but more often starts with a high fever and chills. As the infection progresses, patients may develop fatigue, headache, drenching sweats, muscle aches, nausea and vomiting.

    (On the other hand), Babesiosis is often so mild it is not noticed but can be life-threatening to people with no spleen, the elderly and people with weak immune systems. Complications include very low blood pressure, liver problems, severe anemia and kidney failure.

    Ehrlichiosis is common in 2 forms, both of which are caused by tick-borne parasites that infect different kinds of white blood cells: ... monocytes (human monocytic ehrlichiosis) ... and granulocytes (human granulocytic ehrlichiosis/HGE, also called Anaplasmosis)...

    (both) share the same symptoms: sudden high fever, fatigue, muscle aches and headache. The disease can be mild or life-threatening. Severely ill pts can have low white blood cell count, low platelet count, anemia, elevated liver enzymes, kidney failure and respiratory insufficiency.

    Effective dx is difficult, as only 2 species of these parasites have been identified and scientists believe there may be dozens of other species causing Erlichiosis. Ehrlichia parasites multiply INSIDE host cells, forming large mulberry-shaped clusters called morulae which doctors can sometimes see on blood smears. (It is) most often (considered) when patients do not respond well to treatment for Lyme.

    Bartonellosis is known to be caused by a bacteria carried by fleas, body lice and ticks. . . People with tick bites and no known exposure to cats have acquired the disease. People who recall being bitten by ticks have been co-infected with Lyme and Bartonella.

    Bartonellosis is often mild but in serious cases it can affect the whole body. Early signs are fever, fatigue, headache, poor appetite and an unusual, streaked rash. Swollen glands are typical, especially around the head, neck and arms. Lymph nodes may be enlarged and the throat can be sore. Polymerase chain reaction (PCR) and tissue biopsy can be used to confirm a diagnosis; however they are INSENSITIVE, as are standard blood tests.

    Lyme disease is one of the fastest-growing chronic diseases in the U.S... The Centers for Disease Control and Prevention (CDC) estimate that diagnoses make up just 10% of actual cases... Timeforlyme.org.