9/26/2009

LYME, MULTIBACTERIAL POLYPARASITIC INFECTION

I think this title says it all... how can a super small bug, an American tick who is smaller than normal ticks, can transmit such a multiplicity of infections and of so many types of it causing such diversity and large quantity of symptoms all in one same disease?
  • That information in the guidelines from IDSA stating that their base for treatment of Lyme is two weeks of Doxicicline is very questionable and has been refuted by many scientist, Doctors and patients lately! For me it simply doesn't make too much sense... hey we are talking here about a bacteria that practically "mutates", hides, escapes, transforms, learns to live inside the same white blood cells that are coming to attack her and even then swims freely in the blood... come on, it's devilish and super strong; plus it is not alone. The human host is invaded by an assortment of infections, like if everyone is invited to the party; and I assume that the lack of treatment on time helps the bugs to develop in all stages, nymphs and adults, invading every organ and filling in with co-infections such as other bacteria and parasites and worms...?
  • Yes, parasites and worms plus a smart, dangerous, terrible bacteria should not be treated with some more care and strength and attention? IDSA says 14 to 21 days of the magic pill and voila, cured; and what ever else that shows up is chronic? please? please!!
  • But what strongly called my attention from the IDSA "recommendations" is that they DO NOT RECOMMEND ANTI-PARASITARIAN medicines nor BACTERIOSTATIC ONES?? so I do not know how they pretend to kill those bugs; or precisely maybe this is why patients never recover... my humble opinion; my point of view from a sick patients window... and because of the current research, and because of what the logic reason says too...
  • IDSA literally says in their "journals": "Therapeutic modalities not recommended. Because of a lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme disease: first‐generation cephalosporins, fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole, amantadine, ketolides, isoniazid, trimethoprim‐sulfamethoxazole, fluconazole, benzathine penicillin G, combinations of antimicrobials, pulsed‐dosing (i.e., dosing on some days but not others), long‐term antibiotic therapy, anti‐Bartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional supplements, and others (see table 4) (E‐III)."
  • I have tried Bactrim, the trimethopim-sulfa they mention and it has helped me with my swollen and arthritic hands and made my life livable!!! The long term antibiotics therapy and different "protocols" have been made by many Doctors almost in hiding from the CDC and IDSA and they have shown to be more beneficial with outstanding results; but IDSA thinks bugs are dead after the 14th day so patients do not need any further treatments... different thinking ah? The Metronidazole for parasites and all those others including the fluoroquinolones and cephalosporins, even antimalarial and why not veterinarian medicines have deeper penetration in tissues, so denying them, and refusing every other medicine is not leaving any space for other treatment different from their proposed named medicines; and this is a weird marriage IDSA and CDC made... very strange and difficult to understand; not logical nor scientific, nor good for anyone; ... "just this medcine and this one" and nothing else ever; is it ethical?
  • I wonder what do they mean when they say that also "others"- treatments- doesn't work... so nothing?  no help from alternative medicine, from homeopathic, from different cultures and possibilities?  Why the only accepted treatment is those specific antibiotics and the guideline is so closed to options that have helped some and could help so many others?  I would jump in one feet if it helps, anything that might at least mitigate such suffering, can't they relate?
  • The worst is, that because of this "simple" guidelines better testing and experiments were never made by the government; the Elisa test has just a sensitivity of 45%  - this because they just wanted to say that "everything related to LD was totally under control" - so now, when the illness is propagating all over the country and the world  there are no appropriate sensible testing to demonstrate if the bugs are dead or still alive after the treatment with Doxy or the Rocephin or after years of treatment or lack of it, etc.  Instead,  private enterprises have made studies that reveal not only that the Borrelia is still alive living inside the white blood cells after most of those unique acepted treatments, but also that there are other bugs swimming along the blood stream, some are malaria type, other toxoplasmosis alike, other kind of worms but with bumps in the ends... very scary bugs, weird, unknown and even with no names....  ay  Dios mio!
  • Just let me share some of what my blood tests read: "Wet mount information result: 1. Numerous small round motile extracellular organisms were observed. Scarce distinctive elongated organisms with bulged ends (dumbbell shapes) were observed..." And I'm "lucky" 'cause I just have these and the Borrelia and Babesia, no more I guess ... other patients have Erlichia, Bartonella, and many more different types of bacteria, parasites and germs all with strange names. -Oh, and read that the IDSA states to not give anti-Bartonella treatments, why?  I don't know!-
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  • So, now what? what treatment, what testing, what insurance help or medical help, what are we supposed to do to survive the multiple bugs and at the same time while walking in one foot - as "Dr. J" says, - fight the injustice of the system, wrestle the ignorance of many Doctors, or their negligence or dismissal to the seriousness of this illness and struggle to get help and to help others hoping our bumpy painful road won't be repeated by anyone else???  Some say it has to be fought in the "political arena", well there might be someone willing to make some money out of this, but us, the sick ones, just can fight from our very presence  trying to recover our selves and to be able to share it with others to shorten their road; not much and too much!
  • This illness is so extremely painful, it is such a never ending nightmare that we, sick people with Lyme Disease, pray for finding the way to avoid this suffering not even for us, but for the whole world who is endangered of suffering as much as we daily do.
  • I want to add, like my opinion, me being not a scientist, nor a physician nor an expert; just a dummy who pretends to help in the middle of being so hurt; that IDSA and CDC are obligated to hear with an objective position the presentations made in the public hearing, and with those in mind to make changes if not to do total new guidelines to treat and combat and fight this superior disease that might become a horrible pandemic spread from the US to the rest of the world.
People with Lyme Disease needs proper treatment to kill bacteria, parasites, worms and any other type of microorganisms and protozoan, viruses and germs infecting them.  
Yes IDSA and CDC, as you say  Lyme is "not complicated to treat"; you just need to properly detect and  kill the bugs, all of them, with accurate medicines and any possible type of treatment that might work, and taking what ever time it takes, and then yes, say it was easy and under control!
Thank you!

NOTE:  LYME THE ROLLERCOASTER BLOG DOES OFFER,  GIVES NOR INTENDS TO GIVE ANY MEDICAL ADVISE NOR MEDICAL RECOMMENDATIONS.