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.