Hi Hoping to walk!
Welcome... glad you're here.
Interesting conversation - especially your info about
ticks and deer. I don't live in a "deer area" but now have a healthy dose of "get away from me". I see these videos people post of deer snuggling up to toddlers and I just cringe.
Sounds like you're seeing Dr. Alan Steere? He and some of his colleagues forming the IDSA (infectious Diseases Society of America), ALDF (American Lyme Disease Foundation), did a lot of studies early in the Lyme endemic. His early work showed that a single cenospecies or strain Bb manifested as Lyme disease by developing an Erythema Migrans (bull's eye) rash, and/or arthritis in the knee, and/or Lyme carditis (heart), and also Lyme meningitis (inflammation of cerebral membrane). But they didn't look for --or consider any other associated symptoms (this made their research more streamlined with fewer variables but certainly didn't help paint a full picture of Lyme0.
And a good deal of subsequent scientific research was then based on this early science that defined Lyme very narrowly (including a couple of Lyme vaccines and the IDSA's diagnosis and treatment guidelines). The problem is, they declared that 30 days was all that was needed to clear the rash or the swollen knee. But the other manifestations of Bb were ignored and still are with only 30 days of abx.
This narrow definition left out MANY other genospecies or strains that are all over this country. So, most of us Lymees really don't know which strains we have but we're rarely "cured" w/ 30 days of abx. The serology tests, geared around the single strain, tell us NOTHING other than which DNA parts of the Lyme microbe we might have developed antibodies to--but that's about
it. As Traveler mentioned, Lyme can disrupt the immune function and can also hide from the immune system and abx, which also makes these tests and a truncated treatment protocol fairly unreliable.
In your case, sounds like you were lucky to get the initial 30 days of abx but we often tell people that this is a good start and to spend this time looking for a qualified ILADS Lyme specialists so that you can continue with appraise treatment. Steer and his IDSA pals who subscribe to this very narrow definition of Lyme don't acknowledge the other strains or the need to treat much longer than the initial 30 days.
As also mentioned, it's imperative that you also be certain you have no coinfections... this is something that the IDSA has finally acknowledged so they are now encouraging this as well. I think that's the only thing IDSA and ILADS agrees on, but the coinfections are generally simpler to identify and treat and the etiology is more straight-forward.
You sound like an avid reader - that is a GREAT (and very necessary) quality for a Lymee!
This is 6 years old but the Institute of Medicine's Lyme workshop back in 2010 had some very interesting presentations on Lyme, tick biology and burdens (not much about
other vectors as transmitters but I've included a few more links below), host-vector interactions, surveillance, pathogenesis, etc... and even more info in the appendix.www.ncbi.nlm.nih.gov/books/NBK57020/pdf/Bookshelf_NBK57020.pdf
I agree with Traveler about
other hosts and vectors other than ticks, deer and mice and YES, it is a HUGE concern - not only because of the general exposure risk but because this is being denied at the top levels of science and .gov... it's unconscionable but not inexplicable.
Borrelia burgdorferi can be transmitted via sand fleas, mosquitoes, fleas and other arthropods. In clinical cases of Lyme Disease, biting flies, mosquito’s and mites are suggested to have been responsible for the infection. Borrelia has been found in: numerous species of mites, fleas, biting flies, ie: bot flies, deer flies, horse flies and mosquito’s, indicating that these insects are capable of maintaining the bacteria within the environment and are potential vectors.
These studies might not be available entirely from these links (other than the abstract) but maybe you have a way to obtain them:
Luger SW (1990) Lyme Disease Transmitted by a Biting Fly. N Engl J Med; 322(24):175 www.ncbi.nlm.nih.gov/pubmed/2342543
Herzer P, Wilske B, Preac-Mursic V, Schierz G, Schattenkirchner M and Zollner N (1986) Lyme arthritis: clinical features, serological, and radiographic findings of cases in Germany. Klin Wochenschr ; 64(5):206-15 www.ncbi.nlm.nih.gov/pubmed/3702279
Doby JM, Chastel C, Couatarmanac'h A, Cousanca C, Chevrant-Breton J, Martin A, Legay B and Guiguen C (1985) Etiologic and epidemiologic questions posed by erythema chronicum migrans and Lyme disease. Apropos of 4 cases at the Regional HospitalCenter, Rennes. Bull Soc Pathol Exot Filiales; 78(4):512-25www.ncbi.nlm.nih.gov/pubmed/4075471
Hard S (1966) Erythema chronicum migrans (Afzelii) associated with mosquito bite. Acta Dermato-Venereol;46:473-476 www.ncbi.nlm.nih.gov/pubmed/4163724
Badalian LO, Kravchuk LN, Sergovskaia VD, Belousova VS and Minina AP (1994) The neurological syndromes in Lyme disease in children. Zh Nevrol Psikhiatr Im S S Korsakova; 94(3):3-6 www.ncbi.nlm.nih.gov/pubmed/7975984
Pokorny P (1989) Incidence of the spirochete Borrelia burgdorferi in arthropods (Arthropoda) and antibodies in vertebrates (Vertebrata). Cesk Epidemiol Mikrobiol Imunol; 38 (1): 52-60 www.ncbi.nlm.nih.gov/pubmed/2646031
Anderson JF and Magnarelli LA (1984) Avian and mammalian hosts for spirochete-infected ticks and insects in a Lyme disease focus in Connecticut. Yale J Biol Med ;57(4):627-41. www.ncbi.nlm.nih.gov/pubmed/6516460
Hubalek Z, Halouzka J and Juricova Z (1998) Investigation of haematophagous arthropods for borreliae--summarized data, 1988-1996. Folia Parasitol (Praha);45(1):67-72. www.ncbi.nlm.nih.gov/pubmed/9516997
Magnarelli LA, Anderson JF and Barbour AG (1986) The etiologic agent of Lyme disease in deer flies, horse flies, and mosquitoes. J Infect Dis 1986;154 (2) :355-8 www.ncbi.nlm.nih.gov/pubmed/2873190
Stanek G, Flamm H, Groh V, Hirschl A, Kristoferitsch W, Neumann R, Schmutzhard E and Wewalka G (1987) Zentralbl Bakteriol Mikrobiol Hyg (A) ;263(3):442-9www.ncbi.nlm.nih.gov/pubmed/3591096
Magnarelli LA and Anderson JF (1988)Ticks and Biting Insects Infected with the Etiologic Agent of Lyme Disease, Borrelia burgdorferi. J Clin Microbiol: 26 (8): 1482-6 www.ncbi.nlm.nih.gov/pubmed/3170711
Halouzka J, Wilske B, Stunzner D, Sanogo YO Hubalek (1999) Isolation of Borrelia afzelli from Overwintering Culex pipiens Biotype molestus Mosquitoes. 1999 Infection;27(4-5):275-7 www.ncbi.nlm.nih.gov/pubmed/10885843
Zakovska A, Capkova L, Sery O, Halouzka J and Dendis M (2006) Isolation of Borrelia afzelli from overwintering Culex pipiens biotype molestus mosquitoes. Ann Agric Environ Med; 13 (2): 345-348 www.ncbi.nlm.nih.gov/pubmed/17199258
Kosik-Bogacka DI, Juzna-Grygiel W and Jaborowska M (2007) Ticks and mosquitoes as vectors of Borrelia burgdorferi sl in the forested areas of Szczecin. Folia Biol (Krakow): 55(3-4): 143-6 www.ncbi.nlm.nih.gov/pubmed/18274258
Hope this wasn't too much info!!
Chronic late-stage lyme—likely infected in 2000; Clinically dx Mar'14 w/ Babs, + for Bart, CDC + for Bb. Multiple viruses & GI/immune treated first; started AL-Complex in May, A-Bart & A-Bab in July; Nov'14 IV port installed-started Rocephin; added vancomycin Mar'16
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock root; cholestyramine / jap. knotweed L-5-MTHFR LMN-V-II probiotic