11/17/2009

LYME, THE MEDICAL - POLITICAL FIGHT OF THE CENTURY

It won’t resolve fast; it will be slow and painful like Lyme Disease does!

The question is why the Medical Board is neglecting the pain and suffering of thousands of people by providing insufficient and inappropriate treatment? Why these big powerful people in the medical area ignore the calling of Doctors, patients and medical personnel who witness that their guidelines are not effective not only to treat, but to cure Lyme disease?  Why they do deny a cure? (OF COURSE THERE IS ONE AND MORE!).

  • Easy first answer, because if the treatment we want to give you doesn’t work for you ALL, it is not our problem, right? We already accomplished treating! We gave you what we think would help you, but if it didn’t work is because you do not have this disease or because your disease has now turned “CHRONIC” so it is not in our hands to treat it!  (The most incredible excuse they have is questioning if chronic LD exists or not, or should be called differently or not? Or if LD really exists or not?).  
  • “Treatment is most often used to mean a process of modifying or altering something, and depending on context may be used in an unqualified form to refer to any of the following: A type of therapy used to remedy a health problem; Experimental treatment, the levels of treatment factor(s) (variables controlled by the experimenter) applied.” – Wikipedia.
  • So, do the guidelines to treat Lyme disease modify or alter in some way the illness or the sick person? (NO).   
  • Do the treatments proposed in their guidelines are really a therapy used to remedy Lyme disease? (NO).  
  • Why experimental treatments are not allowed in any level of possibilities?  They even deny every other medicine and therapies but just permit the usage of the two only medicines they propose as the God healers that could even be given in really short period of time. (WHY IF THEY DON’T HEAL?).  
  • But, why are we, the sick, the Doctors and the medical personnel having to fight a political medical scientific fight in here? This is no sense; this is absurd, unfair and cruel.  How much longer they are going to take to accept they had a compromised panel and their judgment was impartial and non scientific?  I heard this Doctor from the panel stating that he doesn’t approve any other treatment because he doesn’t’ “see the science in it;” meaning like if there were no sustained cases demonstrating that any other treatments might help the patients to recover. The real problem here is that this Doctor has a short vision, that’s all.  He doesn’t want to see anything but what he has to say, to justify his partnership or friendship or relationship with the industry and or insurances? ... (Doctor, GLASSES OR CONTACTS?).
  • So why we keep fighting this fight, when we have to battle with such terrific infection?  
  • Why there’s no rush to stop it’s dissemination over the country and other places? 
  • Why there’s this feeling that things are not going to change because this medical system is corrupted and just time and tons of deaths will prove them wrong? 
  • Why this abandonment and dismissal? Where are the ethic, and the respect, and our rights?  
  • So what are we supposed to do by following those guidelines?  Take the two or three weeks of “Doxy” or “Rocephin” and then to wait to die in pain, quadriplegic and with dementia? How long do we survive to this obligated unique treatment stated by the medical board before our real death comes; about two or three years?  
  • Should we just accept our “fate” and live just sick, immobile and not bothering the medical institutions or insurances with our multiplicity of symptoms, due to, if you don’t know, an infection with multiple bacteria and parasites, and worms and viruses?  
  • So they are pushing us to accept to be eaten by bugs inside every cell of our bodies?  Maybe get some pain killers on the final way? Easy to cope with these right?    
  • Many of us have tried longer and different types of treatment – in hiding an in secret - and most of us are recovering thanks to NOT FOLLOWING these guidelines; you’re “sapient God sent healer guidelines”.   
  • It is just obvious that a life of a bug is cyclical and has to be attacked several times, or during long periods of time to combat it; more if there are several types of germs, protozoan’s, bacteria and parasites all living inside the same host; meaning inside the same human being suffering it!  Come on, how can you contradict this so simple SCIENTIFIC reality?  
  • Where’s the ethic and moral, and the swearing to help patients to HEAL. The guidelines are not even offering us a “good decent death”, which is our basic right too, right? where’s the “compassion of the medical field” here?.   
  • Why they are asking us to survive with a treatment that is PROVEN not to work, not to heal, not to cure, not to remedy the illness?  Why they can ask that to us when they won’t be able to take such burden themselves?  
  • Why they are using us, experimenting with us when left with a minimum basic treatment, to save money and to gain more?  
  •   For sure they know they have won the battle and they will maybe for as long as they live so they do not have to worry; but I can swear they won’t won the war, because life is fair and will finally tell! 
  • I just know that I prefer to be in my shoes, suffering, than in theirs, so wealthy and healthy, but causing so many to live and die in infinite suffering; at least I can sleep, sometimes!   
  • Yes it is a not very common illness but very difficult and expensive to treat?  Wow, yes, sounds like I am discovering the hot water right?   Really new unsaid truth?  Unknown?  
  • And this one:  some say it is a hidden illness to not loose tourism; how can something like that be true?  It has never been and economical issue, right? never!
  • What if the media says that our cute deers and some little mice have a bug, a tiny tick, that infects humans with a bacteria that the US Medical Board and Governmental Health institutions still cannot  kill? And that this tick borne disease produce such severe infection people are physically destroyed cell by cell?  Naa, impossible!
  • I bet they’re waiting for this to propagate to Canada, South America and Europe to blame them and make them invest in the medical research and proper experimentation to find the real cure to LYME DISEASE!  It's easier to experiment with people of third countries right?

  • Mean while they deny, deny and deny; that’s very “political”!    
  • If you still have some guts, please watch this video from youtube called:  "Lyme disease , A cure to late for many", just follow the link:

CHEERS! 



NOTE:  LYME THE ROLLERCOASTER BLOG DOES NOT OFFER,  DOESN'T GIVE NOR INTENDS TO GIVE ANY MEDICAL ADVISE NOR MEDICAL RECOMMENDATIONS.  THESE ARE JUST MY THOUGHTS, IDEAS, RESEARCH AND EXPERIENCE SHARED.

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. 

8/20/2009

LYME, WHAT WORKS!

Doing something, what ever, always helps; not doing anything is the worst enemy! This one Doctor in the news said, referring to Lyme treatments, that "sometimes it was better to do nothing"  I think he is absolutely wrong! This was an excuse for not treating patients with long term antibiotics and for just protecting their backs. A Lyme sufferer is so sick that even a bath in hot water is of some help, so come on, do something! So, here's what I think might help alleviate some of the pains and sufferings from Lyme Disease: (And also would mention things that I doubt a little!).First the 'easy" ones, then I'll present the strong stuff!
  • Positive attitude. Sounds kind of funny but yes, the illness is so extremely painful and strong that the attitude is vital to be able to take all that and keep on surviving first and recovering later on. Thinking of recovering as a goal really helps. Start with little goals: just to have some minutes feeling fine; then trying to have a good complete hour, and when God provides, to have a good day and why not, to have a glorious day or a whole good week? Just one night, just one movie, just one dinner; enjoy!
  • Smile. No, not just to have the "positive attitude" but because the facial muscles get so rigid smiling might become an obligated exercise. Other very vital thing of smiling: it moves some tissue/ muscles inside the head that liberates pressure relieving the headache and ear air pressure. If you feel bad smiling because of the Bell's Palsy, smile when you are alone, as a physical therapy, and will also work for the mood and spirit, promise!
  • Rest and sleep. It is an obligation. The body is weak and this is the only way the body can recover. I read somewhere that the clinical depression is cause by the death of cell's of the brain and the only way to have them recovered was by sleeping. But try to have a regular schedule for sleeping; a Doctor said that the metabolism would recover better if you go back to a normal sleeping schedule.
  • Silver? have you read about it or have you tried this? Be aware that it is a metal and that it cannot be discharged by the body so easily; and consider that it might be made in proportions that might or not be harmful. But let me say this to honor the reality we Lymies live, if you don't have any other options and are suffering, you have to consider any possibility to help your self, I think... So, I did tried it, but used Silver Sinus Spray, so I did not ingest it and just used it to clean inside my nose, and yes it helps for that purpose - like a helper - Some say it could be used instead of antibiotics and it is not accurate because silver might help control a little but cannot kill the bacteria which is a tremendously strong bug! Lyme is very serious and dangerous so it should be treated accordingly!
  • Iodide? hey, do not mistake the one that can be swallowed with the one used to treat outside skin problems! Iodine is considered a bacteriostatic element and it is helpful but should not be taken in amounts that can hurt the thyroid. I have suffered terribly the use of this so called medicine that was given to me without telling me the risks involved. LD affects the thyroid by itself, so imagine adding more to the formula? the hyper-thyroiditis was brutal! I believe the intention is good because it is about fighting the bacteria, but sometimes little is better; really low dosages might work more without harm! And consider it is "Potassium iodide" the one that can be taken orally, which also means having extra potassium might affect the heart palpitations, right?
  • Cholestyramine? I just read about it and have not tried it yet. Please research about it as an option to get relief of symptoms, seems to be very helpful. This blog talks about it:
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http://hopeforlyme.wordpress.com/
  • Exercise? Burrascano says that the Borrelia is sensitive to heat and oxygen, so a little of exercise seems to be a great help to fight against it. Please read his recommendations here! http://www.ilads.org/burrascano_1102.htm#rehab
  • Coffee? oh yeah! "My" Doctor in his blog spoke about the value of drinking coffee when the person is suffering encephalitis, this is brain swelling - obviously lots of headache pain - and let me say, yesss it workssss. It seems like the not healthy thing to do, but sorry when someone is so sick and something little helps, it becomes a miracle.
  • Hot baths!! There's a time when the Lymie has heat resistance so the hot bath would be terrible; but when you are all swollen, with pain all over, especially in the back, the hot water seems to be the blessing remedy! Please do not exaggerate or you would end burned! Seriously, doesn't need to be so hot, but to be constant temperature and for a while, long time if possible, to help relax the muscles and the mind, believe me! You can take as many baths as you need and want, no limitation in the treatment!
  • Information: This is the most important and most vital part of the treatment. Read the blogs, read the protocols, read the books, read the guidelines, watch the videos!
  • I do not talk about the "Rife machines" or the "Hyperbaric Oxygen therapy" because have no idea if they really work to combat Lyme disease, but i mentioned them here because some think they're helpful. Better research and decide if to try these or not!
  • TONIC WATER! funny ah? Well life is curious when you are searching for answers and I found, watching a program of the series of Dr. House, that Tonic Water in the US contains "Quinine," which is known to be the medicine used to kill malaria during 300 years! So, I'm not saying that drinking tonic water with quinine would cure the Lyme, but it is a curious element that might come into the game to reinforce medicines or treatments; please always consult the Doctor to what ever medical decision. Anyways the amount of quinine in tonic water might be very small if not how come people drink gin and other liquor with tonic water this last one containing an antibiotic? weird funny ah?
  • Pineapple, fresh and juicy! Yes, I read that it helps with the swelling - recommended to patients with Lupus and of course Lyme 'the inflammatory illness"; and there was a study in Colombia, made by a Doctor I knew for many years, that found that eating pieces of fresh pineapple while fasting, right after you awake and without any other food, would help to get rid of PARASITES! If the sweetness of the pineapple doesn't hurt you, a small piece a day while fasting could help a lot!
  • Now the "strong stuff": ANTIBIOTICS! Yes, they work and are vital for relieving the symptoms and why not, for a possible recovery or remission of the bacteria (s) and parasite (s)!! And because I am not an expert and cannot give a guide as how to treat with antibiotics I just want to limit my opinion about what I have used, heard or read:
    • Doxycicline. the famous or infamous Doxy is the number one antibiotic recommended by the IDSA guidelines. Seems to be more effective when it is used IV, and doesn't seem to be so strong when used orally. What I can say is that it is not true that just two weeks of Doxy might cure anything... The bacteria is strong and has cycles that require longer treatments. Also it is not logic or real that taking one or two pills of Doxy after being bitten by a tick stops the Lyme for ever... ha, would be really good if true, sorry it is not. To be fair, Doxy has played an important role in the life of the American Lyme, but is is not as famous in other countries, don't know if it is because it is not really good for this or because others don't know her as well!
    • Amoxicillin: This old renown antibiotic seems that doesn't work good when left alone, ha, meaning it is being used with other medicines at the same time creating a team that can really try to fight the bug. I have used a not very known medicine called "Unsayn" in the U.S, called "Sultalbac" in South America and Trifamox in Europe. It is a combination antibiotic that contains Amoxicillin and Sultalbac, and I have to report is has been a blessing for me. The Unasyn comes only in injections or for IV; the other names are for pills but those are not sold in US. Remember everyone reacts differently and every person requires a special treatment.
    • Azythromicin: This one Doctor likes to add it to the treatment as a "joker" that comes and goes when needed. Might be helpful if used as a helper but, my poor opinion, do not treat Lyme with "just" Zytro, I think it doesn't really helps and would leave the patient in hands of the bacteria and parasites!!
    • Biaxin: seems to be a fighter of first line. But attention, it's a "loner". Better not mix it too much, gives such reactions...the always recommended combination "Biaxin and Plaquenil" seems not to be good now because there is a study now saying that Plaquenil might induce cystic performance of the bacteria! Biaxin seems to be the favorite of my Doctor because it covers a more ample ground attacking the Borrelia and Bartonella and everything around!  Might be good with Bactrim too!
    • Rocephin - Ceftriaxone; was the very first antibiotic recommended to treat Lyme but it seems to be more helpful when given through IV. The problem is the guidelines IDSA had showed this medication like the one and only miracle cure and during the public hearing one Doctor even said that this medicine was good for nothing! I believe it might be more helpful if accompanied by other antibiotics? Wait, I just found a research made by this Doctor I trust a lot in Colombia, he said Ceftiraxone is "a very good cephalospirin antibiotic with good penetration in tissues IF given in high doses" ... hello? he said that Rocephin, given in what he calls "sub-doses" or low dosages is not only not helpful but might even be detrimental to the patients. he said that if the regular dose is 500 mg a day they raised it to minimum 1gr and ideally should be at least 1.5 gr; the triple of what has been used!!!
    • Plaquenil: Hidroxychloroquine, long word! It is a medication used to fight malaria! As big as it sounds it seems to be really good but has to be used for longer periods than the recommended for malaria that "just needs' 3 days, 3 pills to fight the illness of the mosquito, - the down of this medicine is that many say Plaquenil as the other anti-malarial are super strong and should not be used for such prolonged periods of time. "My" Doctor said he has treated hundreds of patients with this medicine for longer periods and never had a problem with their vision nor anything. I think it is really useful specially for combating the parasites and bacteria at the same time; plus it is been used for the patients with Lupus. Sorry the information is contradictory now, but  it seems that a researcher, Dr. Sapi, found that Plaquenil might induce cyst formation.  Hope there's more to say but until today that's all we know!
    • Bactrim, blessed! (sulfameth/Timethoprim). In my condition it has been vital to help me with the swelling. I feel it has cleaned my stomach and made miracles to my hands and even the arthritic pain. But I read a blog where a patient said Bactrim didn't help and gave her tremendous bad effects; so, it should be taken with care! I was having the dry mouth symptom so I lowered the dosage of Bactrim and my hands started to swell again... What you should know is that Bactrim is a sulfa type antibiotic and of course it is really strong and it should be stopped if gives any bad effect or symptom.
    • Mephon and Malarone. I present them together because some Doctors seem to replace one for the other like if they are from the same family or generate the same results because both have a common component called "Atovaquone". I have not had the experience with any of these, but have to mention them because they seem to be vital in treating Lyme, especially when there are neurological symptoms. For what I have read Mepron ends up giving such bad effects that the "medicine is worse than the illness"; but the Malarone seems to be more friendly and seems to give better results not only for the neuro but against Lyme. "MEPRON (atovaquone) is an antiprotozoal agent", while Malarone is used in the US to treat malaria.
    • Remember it is not the same to have a bactericidal medicine than a bacteriostatic. Let me paste this explanation: "Bacteriostatic antibiotics inhibit growth and reproduction of bacteria without killing them; killing is done by bactericidal agents". "Other bactericidal antibiotics include the fluoroquinolones, nitrofurantoin, vancomycin, monobactams, co-trimoxazole, and metronidazole - Flagyl!-.
    • So, Flagyl or metronidazole. The ones that follow "protocols" use the Flagyl to "pulse" meaning, they use it every certain periods of time to kill cycles of the bugs. Many say those pulses are really strong and makes them herx terribly. I read a blog of someone who proudly announced was doing the "52th pulse"? wow! But I have also read from "My" Doctor that this pulses might not be so beneficial because he doesn't believe in short treatments of antibiotics; by the contrary he uses long terms and even low dosages that are risen later on!
    • My thinking, Bactrim, Flagyl and Ivermectin are soo needed when suffering Lyme Disease because now they are finally finding that we are invaded not only of bacteria but parasites and also WORMS; oh yeah!!
    • Ivermectin: my new addition! this medicine was originally of veterinary use, but this doctor in Colombia told me they have been using it in patients more than ten years now and found it has a much better penetration to tissues specially with patients who are suffering multiple combination of bacteria and parasites - people that come from rural areas or the jungle; like me from the "jungles of Central Florida... - so they use the Ivermectin one drop per one kilogram of weight once a week during three, six months or even a year depending on the case. He said they used before "Albendazole" but it showed to hurt he Central nervous System and the Ivermectin doesn't. He thinks that if Lyme disease compromises organs due to a variety of bacteria, parasites and worms the treament with Ivermectin should be considered along with antibiotics, and for long time!In the USA the Ivermectin is sold as "Stromectol" and it comes in pills, not drops, and the curious thing I've noticed is that they say the treatment is just one unique dose and that's it, cured everything?  That's the way it is being used in Europe too so then you hear that patients got well but relapsed later on; it is obvious because bugs have cyclic lives so treatments should be repeated to kill this new born pathogens.  I mean it is not logic to treat just once for bugs, it requires several treatments for long periods of time. My thinking!
    • Cyprofloxacin: This is deep waters now days! There is a rising group fighting against the use of this type of antibiotics arguing that they damage the tendons and even muscles. There is one guy who has a blog stating that all his bad symptoms are due to the use of Fluroquinolones. My experience is that wow, when you have Lyme and take Cipro, you do feel it! The Herx is tremendous. I got very heat sensitive and couldn't get near the sun nor even watching it in the tv, but I feel it did help me. "My" Doctor says he has not had a patient with ligament rupture in decades of using Cipro, and he is a believer that one of the few antibiotics that is really capable of chasing the bug inside our cells is this one!
    • Factive - Gemifloxacin Mesylate - other fluroquinolone. I read a study where they assure this medicine kills the Borrelia. I have no proof nor have read it anywhere else, and will present the link of it here soon; but it gave me hope to think one day we might hear what does really kills the bug, might be this one?
    • There are so many other antibiotics used for treating LD. With God's help I will mention them here later on.
    I would like to do a special mention of something curious I found recently, that has been made for centuries to fight bacteria? It is called "Hemotherapy", it is, injecting one's blood into a muscle to generate a boost in the immune system. It was used to control infections until antibiotics were discovered. I found a video of a Doctor in Brasil who has used hemotherapy as part of his regular treatments to his patients with different diseases and symptoms. It was something he learned from his father and he kept on doing like the traditional way of treating. For us this seems really weird, right? The thing is this Doctor clears that medicine should never "substract" or replace a way of treating if it cures; meaning keep doing the hemotherapy and add the antibiotic therapy as well. This Doctor is not pretentious and didn't know how big the impact of his words could be, but latelly Brazilians found this videos and it was like finding the fountain of the eternal youth so everyone is trying this method, probably because of the lack of medical attention and poverty. I bring this up because it is information we should be aware of and because it might help; my intention is not to tell people to do anything. I think hemotherapy is very interesting and has principles similar to inmunoglobulin and similar to treatments made to stimulate the thymus, just my opinion! Here are the links of the videos with captions in English: --> http://www.youtube.com/watch?v=t51d6H0TbYI AND http://www.youtube.com/watch?v=xO4vbB62W_I
    By the moment I would like to add, as my opinion, not as an expert or a Doctor, that Lyme Disease is treatable always, no matter how many days or years of suffering the person or animal has. And it is incredible to see how many people has recovered with long term antibiotics and antiparasitics after being in conditions that seemed impossible to go back. Yes, I said antibiotics, the other natural products are team mates, but the warriors are the bacteriostatics and bactericides and parasitarians and antimalarians - because the body is invaded by bugs, multibacterial infection with polyparasitic co-infections, right? Have to fight them before they eat you up! God is big! Cheers to getting well! 

    I wrote this so long time ago I promise to update it with good info soon!!!


    NOTE:  LYME THE ROLLERCOASTER BLOG DOES NOT OFFER,  DOESN'T GIVE NOR INTENDS TO GIVE ANY MEDICAL ADVISE NOR MEDICAL RECOMMENDATIONS.  THESE ARE JUST MY THOUGHTS, IDEAS, RESEARCH AND EXPERIENCE SHARED.

    7/09/2009

    LYME, THE REAL SYMPTOMS!

    It is now being said that Lyme disease is a multi-systemic illness? sounds so huge! I would like to translate that into more common words based on reality. I do ask you to please excuse me ahead due to words are for sure not enough to describe interminable nights and days of pain, suffering and fear; plus, English is not my first language so I have a limited vocabulary and probably a very particular style in my writing when describing so, sorry for that too. Let's take a look at each "basic" symptom of Lyme disease. Let's start by a very common one, that seems to be "simple" but is so extremely complex and delicate in reality:
    1. "Patient presents Neck Stiffness". Who ever reads or hears this could think it is the common stiffness many had felt a couple of times in their lives; but not, the "real" description is far from that: (Nothing that a chiropractor can fix, sorry!)
    • the walls of the neck swell up, every gland in the neck swells too and this hurts of course; the sides of the neck become like two hard pillars that impede the head to move and if it does, it really hurts; - like your neck stiffness multiplied by a hundred? - wait, there's more:
    • swallowing is painful too, but worse because the trachea feels like loose, and the process of swallowing becomes very difficult, it is slower than usual and it seems that you are going to choke even with your own saliva; - slower swallowing is a problem of the central nervous system, meaning neurological-;
    • but the tongue is swollen too so just by being there, by having your tongue inside your mouth - daa- you are kind of choking, no need to drink anything either; - the Chinese Doctors always look at the health of the tongue, swelling means what?
    • and due to all this swelling in the neck, the thyroid is not only swollen herself, but also pressed up and hurt by everything around her, so the person gets more symptoms like palpitations, bradycardia (slow rhythm of the heart), arrhythmia (not a regular beat), problems with the hormones, hair loss, dry skin, etc-
    • did I mention fear, panic disorders, sleeping problems, depression? just some other symptoms generated by this particular gland called thyroid; and this will have to go to other category because other of the "simple" symptoms Lyme generates is the alteration of all the lymphatic system, meaning the glands of the body, but that's another topic.
    • and cannot end talking about the so called "neck stiffness" without also mentioning that this swelling goes deep inside the head, just where the neck gathers with the skull in the back. There's a gland - I think the pituitary - that when swollen causes such a deep pain I call it "The Brutal Pain", and it irradiates to the inside of the head and to the eyes - heat helps a little to relieve it-. Just part of the stiffness... and causes blurry vision and sinus problems...
    • The swelling is so huge it might affect the skin of the head too, so the headache is really an encephalitis... painful and dangerous, needs fast attention!
    • In my humble opinion, the neck stiffness is an indicator of whether the treatment is working or not. I think the neck stiffness is a result of having the bugs up in the nasal sinuses or maxillary, and the liquid that comes out from the nose or throat it is so contaminated that the body fights it with swelling. I would like to better describe my theory but that is not the point today. I have seen that by treating the sinus with series of antibiotics sometimes many or most of this symptoms go away. Also use salt water to clean sinus passages and everything you might have to help your self!
    2. "Fatigue". If someone comes to me and say I have fatigue, I cannot relate as to truly understand that the person is in such bad condition that can barely move, walk or do any simple activity.
    • The fatigue that affects a Lyme disease patient is not just being a little tired, means the physical body is out of energy to operate;
    • The fatigue is also having all the muscles loose, like fallen, like not tied to the bones, so the body can hardly move - and it hurts and then it is called "fibromialgya"? just a symptom?
    • The so called fatigue is also when the bacteria and parasites affected the nervous system, so the response of the muscles and tendons and all the "things" is not as it would be in a healthy situation; the person is not really fatigued, in reality it is not able to do anything!
    • I would like to add here the symptom called "Generalized malaise" - flu like symptom. It is really a flu but hundred times stronger and lasts forever, simple ah? So I think it should go in the "fatigue" category!
    • yeah, fatigue seems to be understood as lazy person, not willing... and it is the opposite!
    • and in other situations it is precisely one of the symptoms that might easily be considered as an indicator of other illnesses and leads to lots of misdiagnoses...
    3. Neurological Symptoms... people think neurological means crazy, or even some Doctors find a neurological symptom and immediately refer the patient to a specialist and or to a psychiatrist... deep water very scary to swim ah?
    • So let's start mentioning some of these like the so called Bell's Palsy... it is a side of the face that gets kind of paralyzed like the name implies, but it moves when the person talks or eats; it is not that there's no control like when suffering a stroke but the feeling is similar to it, and I bet Lyme sufferers get the "Palsy" precisely due to a "kind of stroke" Lyme Disease "imitates" so well... this symptom is many times a huge indicator of the presence of the bacteria Borrelia... nasty ah? 'cause is not only the suffering, the pain, the having the face numbed like when you go to the dentist, but also the self esteem is affected, sick and ugly ah? - may I say? the long term antibiotic treatment helps to have the face more symmetric-
    • some Doctors have learned to "read" into the neurological symptoms to find out and rule in a clinical diagnostic the disease. The tests are not complicated and any Doctor should be able to do them. It is said that the central Nervous system is affected with Lyme Disease, so neurological symptoms might mean Lyme, not just neurological!
    • People with Lyme is so hurt that many times don't realize that they have lost sensation in the legs, or down in the toes; many don't know the blurry vision or double vision is a neurological symptom. Some cannot even coordinate touching their nose with one finger and loose many other "simple" skills.
    • Lyme sufferers might get "inner pains", like inside a leg or inside the hand, and it is purely neurological; plus also have at the same time the muscular pain and the joint pain all together-(as I titled one of my blogs "Lyme, like I've won the lottery", meaning it seems like such a unique astronomic situation! ) So, this inner pains are like a lighting, burning pain; and some cause the fingers or hand to curve, to roll, to be uncontrollably... terrible!
    • Heat - ha - heat sensations inside the extremities or outside in the skin. Sometimes the feeling is unbearable, other times is just there, constant bothering...
    • The senses like smell, taste or hearing affected increased or decreased. There's people who suffer of terrible ear pains because they get an increased hearing, and the sounds seem to be so strong the pain becomes unbearable even using ear plugs. It is a real killing pain!
    • Other neuro symptoms could be increased smell, and this "simple" symptom affects the taste for the food - so it is loosing the pleasure of eating - and if you add these to the anorexia generated by the parasite babesia well, there's a huge bad situation there involving the vital act of eating.
    • don't forget the light sensitivity, it's like standing in front of the lights of a huge concert, where you can barely see what's at the other side; and it hurts! I mean, not only unable to see due to the double vision or the blurry one, but because of the light; and not being able to enjoy music because it hurts...
    4. Arthritis and muscular. (Had to gather these as if they could be easy to explain, but this is getting so long!).
    • Most of the readings indicate that the person gets a pain in a "large" joint, meaning not all the joints and points to the bigger ones like the knees, well, in my case for example my fingers and wrists have been the ones affected. Maybe because I use them before so much writing? I do not run or make that type of exercise so maybe that's why my knees doesn't hurt? would be good to compare. The point is, the symptom refers to a type of arthritis but tries to show it like a sign not as an illness by itself, differentiated by precisely not affecting all the body, or all the joints but "just" some or even one?
    • The "Lyme arthritis pain" goes with long antibiotic treatment; I don't know if the arthritis does too? (I am here writing all this thanks to antibiotics if not I will be trying to sleep, writing in my mind, unable to move my fingers for so long!)
    • So, just imagine someone with the neurological symptoms and the arthritis ones together singing the same song; and to these please add the muscular pain that also come in a variety of feelings...
    • some of the muscular pain, mentioned in the book like just a hurt, is in reality a sharp deep pain that shows out of the blue like cutting the muscle; it's fast and very extremely painful; when you are about to yell it is gone.
    • The painful sharp pain shows from time to time, and it comes and goes because the person is having treatment and because the person is not having treatment too! (Is this the fibromyalgia that many Doctors refuse to see like muscles affected by bacteria and or parasites?)
    • Other is a muscular pain that lasts, that persists and it is there no matter how you move, or if you use hot water or a cold ice... nothing helps! it is a very "stable' constant pain not as strong but yes a seven in a scale of ten.
    • This long lasting muscle pain is part of the "fatigue" situation! I believe the long pain is due to having the muscles "loose," meaning that Lyme Disease affects the capacity of the muscle to contract and the muscle structure is lost and the person gets weak, obviously!
    5. The HEART! This special symptom could go with the "muscle division", because it is a muscle, or with the organs affected, but the heart symptom is so particular with Lyme Disease that should be "honored" in a special classification...
    • One of the first, maybe very distinctive symptom of Lyme heart relation is the bradicardia. It is feeling that the heart is beating stronger but slower... is such a weird feeling. People gets scared of having the heart stopped and the "guidelines" recommend to take special care in this cases; well, care given by whom may I ask, because Doctors don't seem to recognize this symptom well. They just send the patient to a Cardiologist who is going to say that the heart is healthy and there's nothing else to do, so the Lyme sufferer will suffer the heart pains and palpitations with no help nor hope!
    • Oh, well yes, there is something the cardiologist might probably say: "you seem to be very anxious, take these pills for anxiety," ignoring the symptom behind the fear... and who is not anxious feeling the heart is doing funny weird strange painful things?
    • The heart is being affected directly by the bacteria and by the parasites if this is the case. The heart has to be treated and taken care to avoid damage, don't ask me how.
    • Palpitations, fast and sometimes with funny rhythms become part of the every day symptoms of many Lyme sufferers. One thing is to say palpitations and you might relate like when you do exercise and do "cardio" and other thing is to have that speed and strength without moving a finger, or precisely literally because you just moved a finger and those palpitations hurt, hurt badly.
    • I get palpitations because I have not had the medicine, and the body shows signs of not being fine; but later, because I took the medicine -and it is strong - I also get other type of palpitations. I read something that indicated that the medicines for the malaria were found to be good to regulate the heart palpitations; incredible ah? please do research!
    • Other heart symptom with Lyme Disease is a deep pain, inside the chest, deep and sharp but not as strong. It is a pain that lasts, that stays and doesn't let you move because it is very incapacitating. This pain is very confusing because the person cannot tell if it is a sign of a heart attack or not.
    • And do not forget that the heart, of course is a vital part of the circulatory system, and it is found that Lyme disease, as some times happens with Lupus and other diseases, affects the flow of the blood and the veins - the person feels pains in the veins inside the legs or hands, "just" as part of this multisystemic illness... like if it were not enough with all the other stuff.
    Because this writing is so long, and my hands are really tired now, I would like to leave the long list unfinished and to close saying that what seems to be "just" a group of symptoms is much more than what a "regular illness" might present; and, as you can easily see, it is a very extreme painful situation that requires urgent medical care to help ease so many symptoms popping at the same time. This very sickening illness is not CURED by two weeks of Doxi or in the "worst cases" with four weeks of IV antibiotics; sorry, it requires months and years of a very careful compassionate professional treatment! Ignoring such pain and suffering is obviously negligence! And let me clear again that these words come from a patient not related to anyone in the industry or medical field or suing someone or anything, just what my suffering had taught me and what I think should be said or made to help others.
    • HEY I DIDN'T MENTION THE RASH AS A SYMPTOM, THE SO CALLED EYE BULL'S RASH? WELL, IT IS A SYMPTOM BUT NOT A UNIQUE INDICATOR BECAUSE MANY TICK BORNE ILL PEOPLE DON'T EVEN HAVE IT, AND WORSE, MANY DOCTORS IGNORE IT!
    • More professionally and better explained symptoms in this place called Lyme disease Foundation, Inc, click here and read!
    MY GOOD DAYS ARE CALLED GLORIOUS DAYS; TODAY WAS ONE OF THEM! THANK YOU GOD!

    NOTE:  LYME THE ROLLERCOASTER BLOG DOES NOT OFFER,  DOESN'T GIVE NOR INTENDS TO GIVE ANY MEDICAL ADVISE NOR MEDICAL RECOMMENDATIONS.  THESE ARE JUST MY THOUGHTS, IDEAS, RESEARCH AND EXPERIENCE SHARED.

    7/08/2009

    FACING DEATH!

    Someone told me, don't worry this illness is not going to kill you... I said, great, good to know, and laughed!
    • I would like to honor Leslie Wermers, and with her to all the patients who had died of Lyme disease; many feeling abandoned by the medical personnel or by the society who blame them for their illness - "Its all in your head"-.
    • I would like to honor Sue Baiata who had to end her life to stop suffering after being neglected by many physicians for years; and with her to many who suffer every day of pain and fear who are not crazy but extremely sick; here we are together gathered in one voice .
    • The illness is so strong, and everyday is such a struggle that the Lyme sufferer is facing death every now and then! Yes, everyone is going to die, but who's so strong to live with it's life pending at every second?
    • There are times that the body is so extremely weak that just chocking when swallowing a drink of water might be a deadly situation!
    • Lyme patients suffer "kind of" a heart attack, kind of a stroke, sometimes kind of a paralysis, at the same time might have an arthritis and a cramp that might be muscular or caused by the central nervous system.. yeah, something anyone can handle, not to be worried about right?
    • If Lyme Disease is diagnosed early it might not - not sure - but some say it might not be a deadly illness, but, how many cases are misdiagnosed versus how many were early diagnosed? IDSA is now offering a Course to medical personnel to teach them how to recognize early symptoms, all based on their guidelines... meaning based on treating with the minimum medicine to get rid of any responsibility...
    • People dies from Lyme Disease but the records say something else like "Heart Failure" or what ever other symptom looks stronger. I think this is unfair because the person was misdiagnosed alive and misdiagnosed dead.
    • Not stating that the person died from Lyme Disease is hiding the truth and the magnitude of the infection.
    • The Public hearing that IDSA organized to see if there's need to review their guidelines, is it going to consider that each patient is facing a death threat every day? ha!
    • Are they (IDSA) going to analyze the magnitude of the problem that now is affecting the public health in the US and threatening the rest of the world?
    • Are they (IDSA) going to change guidelines to help ill people with Lyme Disease who constantly face negligence and are sent to a painful life and death?
    • I would also love to be able to thank so many who have dedicated their lives and jobs to help others who are suffering severe illnesses; thank you from our hearts and souls and may God in justice return to you lots of love and care when ever you need it the most.
    Please watch the short video of Leslie Wermers -never met her, but she fought for me and I fight for her -; and please read the beautiful article Bob Baiata wrote about her sister Sue.
    -GRACIAS FOR READING ME! 

    NOTE:  LYME THE ROLLERCOASTER BLOG DOES NOT OFFER,  DOESN'T GIVE NOR INTENDS TO GIVE ANY MEDICAL ADVISE NOR MEDICAL RECOMMENDATIONS.  THESE ARE JUST MY THOUGHTS, IDEAS, RESEARCH AND EXPERIENCE SHARED.

    6/25/2009

    LYME TREATMENT IS NOT TWO WEEKS!

    GUYS, CAN YOU HEAR ME?

    • JUST WONDER IF THE TREATMENT FOR LYME DISEASE THAT THIS GOVERNMENT AGENCIES PRESENT AS A GUIDELINE, IS PROVEN TO CURE THE PERSON INFECTED WITH A TICK BORNE DISEASE IN THE US?
    • I SAID CURE, LIKE MAKE BETTER? LIKE, RECOVERED, GET BACK TO NORMAL, HEALED?
    • DOES THAT TREATMENT OF A COUPLE (FEW?) WEEKS OF ANTIBIOTICS -DOXY?- THEY TALK ABOUT AND STRONGLY SUGGEST THE DOCTORS SHOULD FOLLOW, LEAVES THE LYME SUFFERER WITHOUT TRACE OF THE BACTERIA AND OR THE CO-INFECTIONS; OR AT LEAST WITHOUT PAIN AND SYMPTOMS?
    • LIKE WHEN THE MALARIA IS TREATED: A WEEK OF FANSIDAR AND VOILA, THE PERSON IS BACK TO NORMAL! I HAVE SEEN THAT WITH MY 'BARE' EYES!!!! YOU CAN SEE IT TOO ANYTIME IN AFRICA, COLOMBIA, WHERE EVER YOU WANT! IT'S PROVEN TO WORK, OH YEAH, PROVEN - PROVEN!
    • HAVE YOU SEEN THAT RECOVERY FROM LYME WITH THESE PROPOSED GUIDELINES FOR TREATMENT OF LYME DISEASE? I MEAN, HAVE SOMEONE REALLY SEEN IT? CAN YOU PROVE IT? DOES IT WORKS?
    • SO, THIS RECOMMENDATION TO TREAT LYME WORKS AS ANY OTHER TREATMENT FOR ANY OTHE ILLNESS OR AT LEAST AS ANY OTHER TREATMENT FOR A TICK BORNE DISEASE IN AN ANDEMIC AREA OF THE WORLD?? WHY THE DOUBT AH?
    • I GOT LYME DISEASE SO I JUST NEED TO TAKE A COUPLE OF WEEKS OF DOXYCICLINE AND VOILA, CURED; GO LIVE HAPPILY EVER AFTER? IS THIS WHAT YOU IMPLIED? I'LL BE FINE, OKAY, NORMAL AGAIN?
    • NO?? WHY NOT? REALITY IS NOT AS YOUR THEORY INDICATES? SO IF I CANNOT GET CURED WITH YOUR GUIDELINES, SO HOW CAN I GET CURED OR PROPERLY TREATED? I HAVE THE RIGHT TO KNOW! AND THE RIGHT OF BEING ADEQUATELY TREATED TOO!
    • I HOPE YOU ARE NOT PUSHING ME TO GO GET A DOCTOR WHO MIGHT TRY UNUSUAL MEDICATIONS TO SEE IF LYME CAN GET CURED OR HAVE ME SYMPTOM FREE? YOU ARE THE EXPERTS, YOU MUST GUIDE ME, US, WE, ALL!
    • WHAT DO YOU MEAN WHEN YOU SAY IF "CATCH ON TIME"? WHEN IS THE TIME TO CATCH THE ILLNESS AND TREAT IT?
    • WHY DOCTORS DO NOT RECOGNIZE THE MULTI- SYMPTOMS A LYME SUFERER HAS? REMEMBER A DOCTOR HAS TO CATCH IT EARLY ON TIME, SO WHY THEY NEVER DO? THEY DENY IT EVEN WHEN SEEING THE BULLS EYE RASH; MAYBE THE GUIDELINES ARE NOT CLEAR, NOT COMPLETE, NOT ADEQUATE, NOT ENOUGH?
    • BORRELIA, BABESIA, BARTONELLA, CHLAMYDIA, ERLICHIA, WEIRD NAMES FOR WEIRD BUGS AND PROTOZOANS CALLED CO-INFECTIONS OF THE TICK BORNE DISEASE, SEEM TO EASILY SURVIVE TO YOUR RECOMMENDED FEW WEEKS OF ANTIBIOTICS; DID YOU KNOW THAT?
    • HOW COME WE, SIMPLE COMMON PEOPLE, NOT EXPERTS, KNOW THAT YOUR GUIDELINES FOR TREATING LYME DISEASE ARE NOT COMPLETE, AND YOU EXPERTS DENY IT?
    • SO EVERY PAIN AND SYMPTOM THAT KEEPS ON GOING AFTER YOUR FEW WEEKS OF TREATMENT IS "CHRONIC", MEANING WHAT, NOT CURABLE? LIVE WITH THAT FOR EVER? WOW, MAY GOD PARDON SUCH NEGLIGENCE!

    CAN THEY SLEEP AT NIGHT WITH A CLEAN MIND? I GUESS NOT!

    I CAN'T SLEEP OF PAIN, BUT ENJOY MY TIME PRAYING FOR JUSTICE!

    M. J.

    6/23/2009

    LYME DISEASE LINKS AND INFORMATION

    I hope this information helps to understand the magnitude of Lyme Disease and resources to use. Just click on the link, but come back to get more!
    VIDEOS:

    Documentary Film on Lyme Disease and Stealth Infections

    BLOGS
    WRITTEN INFORMATION, MEDICAL ARTICLES AND ORGANIZATIONS
    LABORATORIES
    • CLONGEN LABORATORIES http://www.clongen.com/lyme_disease_testing2.php
    • Central Florida Research, Inc http://centralfloridaresearch.com/lab2/ Lyme Antigen Test http://centralfloridaresearch.com/lab2/index.php?option=com_content&view=article&id=50&Itemid=58

     I hope this is a start! ...........


    NOTE:  LYME THE ROLLERCOASTER BLOG DOES NOT OFFER,  DOESN'T GIVE,  NOR INTENDS TO GIVE ANY MEDICAL ADVISE NOR MEDICAL RECOMMENDATIONS.  THESE ARE JUST MY THOUGHTS, IDEAS, RESEARCH AND EXPERIENCE SHARED.