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. 

7 comments:

  1. Anonymous9/28/2009

    Just to clarify that you had the recommended two weeks of antibiotics, plus tons more and you are still sick! So, two weeks is not enough and yes, something else should be made!!
    At least doctors should order the proper lab tests and be compassionate with these patients that are not crazy because they are multi-symptomatic -They have an infection in the blood and all over their bodies!!! They have scientific reasons to complain of pain here and there and a bit more...
    I'm afraid that your cry for help might be misinterpreted; when the truth is that you are desperate, trying to LIVE!!! and in your search, trying to help others as well.
    My heart is with you! :) I admire you deeply!!!

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  2. Thank you very much!

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  3. That was my very beloved twin sister;
    seeing her loved one barely recovers and goes down over and over again through the years, battered by a disease ignored by the society?
    can you relate to her suffering? Guess it is worse than mine! Ininmaginable!
    MJ.

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  4. I am very sick with Lyme and so many of the coinfections mentioned.Dr.J. in Maryland is my hero.I do not know where I would be now if by word of mouth through a friend,did not lead me to him. This friend of mine had suffered with similar symptoms for years.I would occasionally see her at social events on a yearly basis. She told me that her memory was returning after two months of treatment from a Dr. in Maryland. I RAN to see this Dr.!!! He diagnosed me a decade after I first became ill. He was diagnosing and treating sick people with Lyme disease. He was true to his oath as a medical doctor and he is under scrutiny for this. What is wrong with this picture? Why is society, weather it is the medical or political arena, blaming the victims?

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  5. Thank you Suzy for your comment. So happy to hear Dr. "j" helped you too. He saved my life too! And he took care of you after ten years of being sick, when others just call it chronic or just psycological? and you have seen a positive result just by having someone who really cared to treat you as he should? Incredible! And as you say why the victims of such a terrible infections are blamed and accused and presecuted when it shoud be the other way around?
    I should say I am so shocked to this situation especially because I come from other country so it is really hard for me to understand how it can be possible to have an illness, an infection caused by an insect, typical of the country; almost unique to the US, and Doctors denying it, dismissing it, fighting over it and most, ignoring it. How can it has to be us, the sick ones; the ones that can barely survive a day, are the ones having to give the huge fight to win the war of negligence an dismissal?
    The problem here is the answers: is it purely economical meaning, everything is set just to benefit insurers? But if it is economical why not the pharmaceuticals are making their "August" with us needing so many medicines? The answer could lead to saying that the pharmaceuticals still don't have a "cure" and that's why they are not biting the cake yet? Or are they waiting to this become a pandemic so everyone would pray for treatment and then yes, sell tons? This video in youtube shows that at the end of the last century the government created some laws to permit the profit out of studies related to Lyme Disease; could this be the reason why we hear nothing new about this illness? Because they are hiding every information until they can do a real huge profit out of every lab test or research made? How can it be possible that some Doctors like Dr. "j" and some few others have to fight their own "species" meaning other Doctors just to try to show them that Lyme disease exists and it is treatable, and long time sufferers DESERVE treatment and can RECOVER from it? who are the crazy ones here, the wrong ones?
    I just can't even handle the idea of knowing someone is so extremely sick and when needs the most help it is when it is most denied by almost everyone....
    But Suzie, God is big and the truth will prevail. In my country we had a saying stating that the truth limps and walks slow, but one time it will come!!!
    I just wonder what would happen if Africa or South America won't treat their patients with malaria.. what would the big US would say? So, why the US doesn't treat it's own worse that malaria tick borne infection? Just the Borrelia is a killer MALARIA LIKE BACTERIA; the Babesia is a "malaria like PARASITE'; and the Bartonella invades the blood, and swims freely invading everywhere. One of the co-infections seems like a worm, hey, leave someone untreated or not properly treated for years invaded by bacteria, parasites, Bartonella and worms and pretend the person is NO SICK, ha...or worse, say it is not treatable and let the person to die, slowly and in pain... unfair... more if it is possible to recover as some good Doctors of this country are demonstrating every day in their practice; well, until the big Medical board takes their licenses to shut them up!
    I'm happy I am here trying to fight for a truth that if it is not gong to benefit me, would probably do for others; that is good enough!
    TAKE FLAGYL, IVERMECTIN, TINIDAZOL, ANTIBIOTICS AND BACTRIM; KILL THE BUGS AND CLEAN THE HOUSE!

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  6. I am not afraid of useing my real name. I will tell anyone that will listen to me about this subject. I have relatives dying from this disease and on the verge and (I mean on the verge) of wanting to end thier life. Everyday it is a challenge to give these people hope to keep fighting a system that is slow to respond to thier desperate cries of pain and suffering. It is worse than Aids in my opinion because it is denied. It makes people think the Lyme sufferer is insane and the Dr's that treat them bad. There has got to be a revolution. My goal is to chase this disease around my body and keep well enough so my brain works and manage the cronic pain in order to fight for those still suffering. It is a big order for a cronicly ill people such as us. What else can we do? I am sending LOVE and support to you MJ.

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  7. Now we are two in this fight, the picture is finally changing, we'll win!

    I might sound repetitive or if like I wanted to sell something, but because I've seen such recovery in my self after taking antibiotics and antiparasitics; I just want everyone to try them!
    I read somewhere a post of a person who said "Ivermectin" was good, but then relapsed, so I wondered the dosage he got and found he had Ivermectin once, one year ago, and then said it didn't work so much. Well, who ever has bugs has to know that treatments have to be repeated to kill the cycle of the bacteria or parasite;
    THIS IS HAVING TO GO BATTLE AFTER BATTLE UNTIL WINNING THE WAR!

    Such painful situations, so hard to be so limited to help!

    Note: I applaud you giving your real name,it is your way, nice, direct. I believe my name is not important but my voice? I'm a journalist, no need of fame or sensationalism! See? The same coin but different sides!

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