The Fatal Truth About Lyme Disease: What Everyone Should Know



255396_121731471303041_865189947_nYou have heard, and will hear, it time and time again: “Lyme disease is cured with a few weeks of antibiotics.” If this is the case, why are hundreds of thousands –if not more- suffering for years on end from the disease? According to the CDC, they are not, because chronic Lyme disease does not exist:

“Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme Disease Syndrome. [1]”

For people suffering from Chronic Lyme, this statement is infuriating because they feel they are being told they are crazy; and also because pain, fatigue, and joint/muscle aches are often the least of their worries. Much more serious health complications arise from Lyme, and it is important that the public is aware of these symptoms. When looking at the bigger picture, the infuriating part is just how dangerous this statement is. If left untreated, Lyme disease can and will be fatal. That is the sad and often ignored truth.

Furthermore, it is estimated that only one out of every ten cases of Lyme disease is actually reported and that numerous individuals are misdiagnosed. In 2010 alone, state health departments reported 22,561 confirmed cases of Lyme disease and 7,597 probable cases to the Centers for Disease Control and Prevention. The actual number is believed to be much higher than the yearly number of cases reported. One reason for this is due to the fact that reporting criteria varies from state to state; and most states take time to report only the minimum amount required. Still, the number of reported cases has increased 25-fold since national surveillance began in 1982 [4].

Of course it is three years later, but unfortunately 2010 is the most recent year researched. So if the number of reported Lyme cases was only continuing to increase at that time, and since there has been no evidence of a decrease in cases, it can only be assumed that the number of people with Lyme disease is appallingly higher at the present moment. There are so many angles to touch on this topic, so let’s start with the very basics because there are many, many people who do not so much as know what Lyme disease is, much less how you contract it.

 

What is Lyme disease?

  • According to ‘Wikipedia’, “Lyme disease, Lyme borreliosis is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia [2].”
  •  In lay terms, Lyme disease is an infection from a tick bite.
  • Eloquently put by ‘Tired of Lyme’, “the non-technical term is what can truly depict Lyme disease best.  It involves aspects ranging from every angle of the lives of those affected including physical, mental and social. [3]”

Initial Symptoms

  • Bulls-eye rash is a definite positive of Lyme disease. However, only 50% of people with Lyme disease recall having a bulls-eye rash. The rash can also appear in bruise form depending on a person’s pigmentation. For example, a bruise that is blue/black on the outside, with a lighter color circle in the middle is a clear indication of Lyme disease. If you get to the doctor while you still have the rash, you have a better shot of getting treated right away and not having to deal with Chronic Lyme disease. As I will discuss later, testing is not always accurate, so getting to the doctor when you notice a bulls-eye rash is imperative.
  • Fatigue
  • Flu-like symptoms
  • Muscle and joint aches/pain

The above symptoms describe the typical initial onset of Lyme disease. But what if you, or someone you know, miss the crucial time period in which those are the only symptoms? Unfortunately, there are over thirty other symptoms, each of which can mimic other diseases. This along with the fact that standard testing is only 30% percent accurate is why it is of the upmost importance for the public to be informed on, at the bare minimum, the basic truths behind Lyme disease.

Other Symptoms

  • Low grade fevers, “hot flashes” or chills
  • Night sweat
  • Sore throat
  • Swollen glands
  • Stiff neck
  • Migrating arthralgia’s, stiffness and frank arthritis
  • Myalgia
  • Chest pain and palpitations
  • Abdominal pain, nausea
  • Sleep disturbance
  • Poor concentration and memory loss
  • Irritability and mood swings
  • Depression
  • Back pain
  • Blurred vision and eye pain
  • Jaw pain
  • Testicular/pelvic pain
  • Tinnitus
  • Vertigo
  • Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)
  • Head aches
  • Lightheadedness
  • Dizziness
  • Mysterious migrating symptoms that seem to come and go

Testing

A few blood tests are available for Lyme disease, but none are 100% accurate. The standard test is called an ELISA test. Oddly enough though, the ELISA is not based on the specific Lyme bacteria strain that is most beneficial for diagnostic testing. Therefor, the ELISA has a mere 30% accuracy rate. A negative reading can be meaningless, because false negatives are more common than not. A false positive is basically unheard of, so if you are lucky enough to test positive in the early stages it is a clear indication that you have the infection and need to start treatment right away. I use the term “lucky” here not because you are lucky if you have Lyme, but because you are lucky if you have Lyme and test positive early on. For many, it takes one pain-staking year after another before they are so much as introduced to the idea that they may possibly have Lyme disease. Another available, yet less administered, Lyme test is the Western Blot. While this test is slightly more reliable than the ELISA test, it is still faulty.

Doctors should not rely on test results alone to make a Lyme diagnosis because to date, a reliable test for the diagnosis of Lyme disease ceases to exist. Lyme doctors make a diagnosis based on a patient’s symptoms, medical history, and exposure to ticks –although that last one is not required, since ticks know no boundaries. Contrary to the popular statement that ticks are prevalent only in certain areas, the truth is you can walk outside your own front door and get bit.

If it all possible, it is best to get to a Lyme literate doctor if you believe you may have Lyme disease. This too also proves to be a difficult task, as many do not publicize that they specialize in Lyme disease due to legal reasons. To receive a list of Lyme literate practioners closest to you, email the ‘Tick Borne Disease Alliance’ at medicalinfo@tbdalliance.org.

Resources:

  1. http://www.cdc.gov/lyme/postLDS/
  2. http://en.wikipedia.org/wiki/Lyme_disease
  3. http://www.tiredoflyme.com/
  4. http://tbdalliance.org/getinformed/overview2

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76 comments on “The Fatal Truth About Lyme Disease: What Everyone Should Know

  1. I lived in Newport News, VA for 3 years with my family. My wife was military, stationed at Ft. Eustis, and we lived on the Lincoln Military Housing community. Our townhouse was in the rear of the community against a treeline which I initially really liked.

    My wife came home early in our stay there covered in ticks for the first time. Much of her training was in Newport News Park which is infested with ticks the deeper into the woods that you go. That first time that she brought home a couple handfuls of ticks embedded in her uniform one of them bit me and buried itself into my left shoulder blade. I’d heard before that you can burn them out so I tried doing so with matches… I put a whole book of matches out right on top of it but it just kept burrowing deeper. I melted the skin above and around the tick trapping it in. It did eventually find its way out a couple of weeks later. I didn’t feel or see it come out but my wife noticed that it was gone when I took my shirt off at the beach. This was about four and a half years ago now.

    Since that incident I learned the right way to remove ticks because they are everywhere in VA. I came into contact with them regularly so I purchased a tick removal tool which I used on myself, my wife, and my dogs. My daughter got one deep in her earlobe. I took her to the ER for that one, they removed it, and she tested negative.

    This upcoming November will be 2 years since we’ve back back in Northern, NY. I began getting really sick a couple of months after we moved back. The symptoms varied and seemed to come and go. Nausea, swollen lymph nodes, joint/muscle aches and stiffness, stomach cramps, blurred vision.

    I went to my doctors several times complaining of different symptoms. I came in for blurry vision and was given a referral to an ophthalmologist who said everything was fine save for some minor vitriol deterioration. They didn’t seem to be taking my complaints seriously after a while even seeming to roll their eyes when I came in.

    I moved back to my hometown of Plattsburgh, NY 1 year ago and plan on staying here for good. I’ve just been continuing to deteriorate steadily for the past year and a half. I starting thinking that maybe I was crazy… A hypochondriac… Maybe it was all in my head. I’d convince myself of that in between bad flare ups but some days I am in pain and barely able to pull myself out of bed in the morning.

    For the past 6 months or so new lymph nodes have been continuing to pop up in new areas all over my body (neck/arm pits/groin area) they pop and they swell so much so that all of the muscle tissue surrounding them hurts badly.Not sure if my doctor is just better than the previous ones or if my symptoms are just much worse but he ordered a scan of my neck which revealed that there are swollen chains of lymph nodes on both sides (which I already knew)

    This doc ordered a biopsy on one of the nodes (behind my ear/easy access) which came back negative and a blood test. He then told me that he knows something is going on because some of the nodes are large and rock hard. Also my blood test revealed that I am anemic, borderline diabetic (never had problems with sugar in the past), low potassium, low vitamin D, low white blood cell count, and low testosterone; i’m shutting down. On top of the way that I feel I can’t think clearly. I’ve been forgetting things that I know and have known for a long time and in constant pain. I am normally above average intelligence but I feel really dumbed down and hazy.

    My doctor told me that he knows based on my blood test and the lymphadenopathy that there is something going on but that we were going to have to track it down. He ordered a battery panel of blood tests testing for 26 different illnesses that could account for all or some of the symptoms. I thought that I probably had some sort of autoimmune disease…

    The blood results came back last Friday. Tested positive for Lyme on an ELISA test confirmed with a Western Blot (doc wanted confirmation beyond ELISA) Not sure how long I’ve had it, which tick bite transferred it, or if the treatment is going to work. I’ve read a bit online about limited success with antibiotics. I am sick… That is what I know.

    Doc ordered 21 days of Doxyclycline. Been on it a few days now… Makes me feel even more nauseated. This is a bit long… long as a post itself but This is my experience with lyme so far; not sure how it’ll end up.

    Hope this helps someone; if you have been bitten by a tick and are feeling sick tell your doc to test for Lyme.

  2. Brian

    I received a bullseye bite nearly 2 years ago after spending time at my friends camp, on my upper inside of my leg. I have never been tested, but I have also never come down wit ANY of the symptoms….Are you sure the bullseye is a dead give away??

    I am also a pretty healthy person. I eat healthy, I do periodic detoxes including the Master Cleanse and the more intensive Candida cleanse. I use Young Living essential oils as my daily “medicine” and quite frankly, I am healthier now than I was then!…

    • Zanne

      I had the rash too. No symptoms for over 10 years, then whammo! Full blown arthritis, and late stage symptoms known as ACA came on literally overnight.
      I can not get treated fully, and have been crippled by this.

    • Hope

      Could you please tell me the candidia cleanse you used?
      Thank you so much.

      • Brian

        I followed the protocol in the book “The Candida Cure” by Ann Boroch. Its a very informative book and a quick read. I highly recommend it!

  3. matt w

    I was wearing a monavie t shirt one day and had a guy come up to me saying how much he liked MV and i asked him what it did for him and he said it helpped alot with his symtoms of lymes disease….Just saying thats what he said…I drink MV with my daughter cause it helpped take the inflammation out of my daughter with the disease she has called JDM….so to all of u its worth a try..better then taking meds that rot u.. Good luck..

  4. Razzle

    I saw Dr. Bigelsen…and IMHO, he’s a quack!!!
    I most certainly believe in the germ theory of illness – ever have food poisoning???
    The reason people don’t get well from Lyme treatments many times is this bug has been around a lot longer than we have and has many, many, many ways to survive even the most unfavorable conditions.
    Yes, I believe homeopathy can cure Lyme, if one has a good practitioner and catches the disease early on (as a previous poster here has experienced).
    I got Lyme from a red fire ant bite (red fire ants eat ticks), so I know Lyme can come from other biting insects.

    • I have had a number of cures of Lyme disease. I believe the germ is going in the weakened body and the weakend body is the real cause. 80% of my Lyme disease cases had surgery within a year of that diagnosis. Putting a knife into the body and cutting it apart weakens the body and that I believe that’s the real cause.

    • Food poisoning is usually not caused by germs but by intestinal irritants. Who are you? Tell me your real name. You are making comments about me and I would like to know who you are.

  5. Randy Stull

    I have been dealing with this wretched disease symptomatically since the late seventies and finally got a diagnoses in ’92. On iv rocephin and claphorin 4 grams 3 times a day for 2 and 1/2 years. I limped thru lifr not worth a damn till ’09 when it attacked me with a vengeance again. This time the pain is so bad I don’t no how much longer I can survive. The pain doctors dont agree with iv treatment and they look at me like I am a piece of s@#t. The llmd wont write pain meds or xanax so have to have 4 doctors non of which will talk to the other. I have tried rife machine, hydrogen peroxide interveneously and a lot of other crap with no success. I am dying. As a last ditch the llmd has me on immunoglobulin for pain. Have a new friend from facebook in Arizona thinks can help. The problem is you need your brain to help yourself and I no longer have one..I have spent thru insurance and myself over half million bucks on trying to save myself. 69 doctors appts last year and am worse….I was in the hospital recently for 4 days and the doctor told me that I needed a psychiatrist and a pain doctor and my midline was so I could put heroine and cocaine in my body!!! Any help would be appreciated…I am junkman@qis.net and can be found on FB as Randy Stull..thanks. and god bless..

    • SD

      So sorry Randy! Where are you located? I assume you are on various supplements as well as antibiotics? And if you’ve had it this long you have read all the leading doc’s written works? I think you still have a brain as your post is well written. :) Killing the deep tissue bugs is essential but so is supporting your whole body system with important supplements (ie banderol,catsclaw,sarsaparilla,coq10,zinc,emergenC, etc etc) LOTS of supps but your body can’t fight in the state its in and needs cellular/tissue help. Marty Ross in Seattle is llmd, maybe he could help. You can find him online too. Best wishes to you!!

  6. Lucinda

    I have had negative tests in Australia but most of the symptoms were significant for several years, and had been given the diagnosis of fibromyalgia. But since I have had hundreds of ticks and scrub mites I knew there was a strong chance of the Lyme-like disease being related. Once I found eventually found a sympathetic and better informed doctor who treated me with strong doses of doxycycline, ruilide and minomycine as well as lots of natural immune system boosters, there has been significant relief. I am still having pretty bad on going problems so trying every suggestion i get. Thanks for this dialogue folks. Lucinda

  7. Lot of info here…good. Lyme sucks. I’ve had it for years and can’t afford the treatments…but I am also writing a book (release date October 2013) of Lyme bios I hope will also help raise awareness…and maybe help me pay my bills….

  8. courtney
  9. Shahee

    It might be helpful to understand the theories about the basis of all disease which Jon is pointing to: Pleomorphism vs. Monomorphism. Monomorphism is a relatively new concept in medicine (well since Luise Pasteur), and it has led medicine astray.

    In reality there is but one dis-ease, and it’s cure is ease. To heal you must understand what is throwing your homeostatic balance off-ease, in order to correct that. Once we start to understand that we are a walking aquarium of many different microbes and when they are in symbiotic balance we have ease, and when they are out of balance, we have dis-ease. Taking high levels of antibiotics is like pouring chlorine into your aquarium. You might kill off the algae, but you will probably also kill the things you want living in there as well.

    Out of the trillions of human cells, somewhere between 75 – 90% of them are NOT human cells, but microbial. When people aren’t diligent about correcting microbial imbalance, the health returns to ease.

    • Pleomorphism is correct! It’s not the germ but the terrain that it lives in.

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  12. Karen

    I’m wondering if it’s not actually chronic Lyme Disease that lingers but systemic Candida as a result of all the antibiotics…the symptoms are pretty much identical.

    • Carol

      Interesting…I was thinking something similar, too, because like Candida, the symptoms sound very similar to what I felt when exposed to toxic mold for months without knowing…especially the brain fog, confusion, fatigue and muscle weakness. Regular doctors couldn’t help me and would only prescribe things to treat my symptoms. Finally my naturopath led me to what I needed to heal.

  13. Jon

    According to Harvey Bigelsen MD Lyme disease is not from ticks at all.

    “The growing epidemic of “Lyme disease” that is spreading rapidly through this country, and continuing on through most of the industrialized countries of the world, is not from the bite of a tick, and cannot be cured by your neighborhood doctor’s pill collection. This epidemic has been blamed on a spirochete that is transmitted by the bite of a tick and, frankly, that is wrong! Approximately 30% of all Lyme disease cases have NEVER had a tick bite.”

    FULL ARTICLE:
    http://harveybigelsen.wordpress.com/2012/05/21/drbigelsen-com-8/

    • Most of the time people are not aware that they have been bitten. Ticks love to attach themselves in hard to see places. You scalp, the back of your ears, the folds of your body and anywhere they can. Not everyone gets the classic bulls eye rash either. It can take months to years before you will start feeling some symptoms. That’s when you run from doctor to doctor trying to figure out what’s really wrong with you. Then comes the misdiagnosis of MS, Lupus, Fybromyalgia, Chronic Fatigue Syndrome, ALS, Arthritis , Alergies , and even Depression because it’s all in your head diagnosis! Then you have to spend thousands of dollars out of pocket to regain some of your health back because the insurance companies will not pay for the proper treatments you need. Most of all….. You’ll have to find a LLMD ( Lyme Literate Medical Doctor ) who actually knows and understands the complexity of the disease. In the mix of it all you may loose friends, your job , and family members because you’re so sick and it takes it’s toll on everyone around you. No one truly understands Lyme unless they have been down that road. It’s not only Lyme anymore either. There are confections such as Bartonella, Babesia, Erlicia and many more that will not show up in a Lyme test. Not to mention that the tests are NOT accurate and will give false results. Please feel free to visit http://www.lymediseaseandyou.com to educate yourself about this fast spreading epidemic!

    • http://www.lymediseaseandyou.com for a better understanding about Lyme.

  14. I live in Connecticut where Lyme is at frightening levels in the tick population. I had tachycardia (rapid heartbeat) one day out of the blue and went to my doctor, who did a bunch of tests (echocardiogram, EKG, stress test), and my heart seemed perfectly fine. A few weeks later it went away, but then my jaw got so sore I couldn’t chew food. Then that moved to my elbows…then my shoulders…then my hips…

    I got suspicious about this migrating joint pain and added fatigue, and did a bit of research and immediately suspected Lyme. I demanded a Lyme test from my doctor, who didn’t want to test me because I never found a tick. He eventually gave me the test to, in his words, “put my mind at rest”. Surprise surprise, I came back positive for acute Lyme.

    Even after the antibiotics, I still get bouts of ‘brain fog’ and weakness, which I never used to have before having Lyme. My doctor still refuses to admit that my tachycardia (which lasted for 2 weeks before going away on its own, which is one of the symptoms of Lyme!) was related at all to Lyme Disease. I have a friend in upstate New York whose muscle shakes are getting worse and worse from her untreated Lyme Disease. This is a serious disease! Doctors and medical organizations need to stop playing with peoples lives with their ridiculous arguments. Post-Lyme DOES exist. Those who suffer from it are NOT ‘looking for attention’ or ‘faking it’. Just because they can’t pinpoint the exact reason for post-Lyme doesn’t mean it doesn’t exist – it just means they need to do more research.

    • Glenn

      I have a friend who has had it for years and has gone through many different treatments for it, some had worked for a short time. Now she drinks 1 glass of warm water with 2 teaspoons of honey and 1 teaspoon of cinnamon in it once a day and she no longer has ANY symptoms ,,,, This worked for her !!!!! She found this recipe in homeopathic book as a treatment for a few other disorders and diseases. Hope this helps you and others like it did her. P.S it only took a few week before her symptoms were gone !!!

  15. Tincture of Teasel was the only thing that seemed to provide long-term sustained results for treating Lyme Disease. Research it to learn more about it and how it can help.

  16. Pav

    I came across this information recently… MMS is a cure for any disease, even diabetes clears within a few months when the correct protocol is followed. It’s very simple and inexpensive. On their website, they also recommend the following product…. (Hope this info will help someone… Please share info on MMS)

    “The full transcript of our lastest newsletter articles are available at Mineral Solutions – Articles library. Below is a preview of what you will find in Issue 1 – and be sure to check out the Quick Tips at the end of this newsletter (or on our website) … we are sure you will find them very interesting, helpful and thought provoking!

    Liposomal Vitamin C with added Glutathione

    In 2005, claimed by Dr Levy, Lyme Disease was cured in 72-hours – “A woman suffering with severe and debilitating Lyme disease had been seen by many doctors and had not responded to several courses of antibiotics”.

    A very notable quote:

    “Amazingly, Vitamin C has actually already been documented in the medical literature to have readily and consistently cured both acute

    polio and acute hepatitis, two viral diseases still considered by modern medicine to be incurable.” – Thomas E. Levy (MD, JD).

  17. Alex Lamas

    I’ve been suffering for the past 3 years with weekly chills, fever and joint and muscle pain. I had Lyme’s twice in the late 90′s and in 2001. My recent diagnosis has been negative but I don’t totally believe it because my symptoms are the same as when I had Lyme’s. I’ve countless tests for everything from Epstein-barr to AIDs and nothing. I’m supposedly the healthiest guy on earth but I still get these fevers. I’m under the care of a good Chinese herbalist which helps keep the symptoms to a minimum but I still get the fevers from time to time. I guess I don’t know where to go from here.

    • naomi

      Alex-the following is just my opinion from what I have experienced, but this could be babesia (your chills, fever, joint and muscle pain). I was infected in 1998 (no idea then) and endured many symptoms (all on their own schedules) for years until many became constant over the last two years. It all went “Jenga” last summer when I began having peripheral neuropathy and the fatigue and other symtpoms went off the charts. There was no more “plowing through the day” anymore. I had finally crashed and was non-functioning and have two daughters to care for. (Parents drove from Floria and stayed with me to help.) I lucked out and got the hint that this was Lyme, started googling, found an LLMD (tested cdc positive) and began treatment with antibiotics and herbals/probiotics/supplements (to restore ravaged system) and have had many improvements but still have a long way to go.

      When I started Mepron/Zithromax for babesia (which usu isn’t done right off until have started addressing Lyme–and I have Mycoplasma pnue. and bartonella), the babesia symptoms, which I had had off and on through the years, became intense: chills, fevers, chest pain, joint pain, muscles felt weak, horrendous headaches and feeling of brain swelling, eye pain, ear pain, ear ringing extra loud plus head buzz, night sweats, woozey off-balance feel, etc. These weren’t constant and not all at once and prob left something out, but it’s been tough–was worse than when first started treating Lyme for awhile.

      I read enough from people who went through it whose symptoms etc were similar to mine to know this is what often happens and to stick with it as much as possible (doc did have me cut back for awhile) and now it is gradually getting a little better each day (for the most part) and can take full doses. Too many people said they quit early and regret it, which does not kill off the life cycle of this blood parasite. The people who stuck with it report (this is not scientific–it’s just my hours of open-minded googling) how finally it made a big difference and then concurrent treatment for lyme and other coinfections is more outwardly successful.

      Of course, everyone is different and this is a multi-systemic autoimmune disease. I am a severe case due to amount of time undiagnosed and having several coinfections, which makes a big difference. The Chinese herb (I do not remember how to spell this) arteminsia (ok-it’s something like that) is supposed to be effective, too. Many take it with the rx drugs or try it on its own. It seems to also cause a worsening (if you have babesia) of symptoms while it works (like herxing but not quite the same because it’s a parasite or protazoa).

      It takes several months of taking the mepron etc to kill the babesia due to its cycle. I don’t know how long the herbal-only process takes. Anyway, you may want to look into babesia as the cause of your continuing symptoms. The babs symptoms are similar to lyme and bartonella so you have to really investigate to discern, but there are differences, and many people who don’t get markedly better treating Lyme should look into babs (the blood tests for it are faultier than Lyme test so it’s often a clinical diagnosis.

      My LLMD is also an infectious dis. specialist and studies everything from bloodwork, as Lyme and coinfections affect so many other workings, like thyroid, etc. This disease is so complicated and so individualized–no wonder so many doctors chose to remain in denial. Also, regarding the Lyme blood test. My doc had me (still does) on the herbal Samento drops (lyme killer which definitely causes herx when start) and doxy for a month before drawing blood for the western blot. I’d had a negative western blot before which most/many people with late stage lyme do. You have to stir up the spirochetes to get the antibodies/antigens out to where they have a better chance of getting their proteins recognized by a western blot. Some people luck out and are activated enough at the time of the test.

      I will continue with Samento and other herbs/immune building supps etc even after I eventually stop antibiotics. Yikes. sorry this is so long. I’m sorry you (and other respondents) have suffered. Even before my “crash,” all those years of symptoms were so difficult, as a whole–esp. when docs tell you nothing is wrong. It’s like an evil puppeteer timing all sorts of seemingly unrelated mental and physical issues as slow torture-plus to confuse and doubt yourself. Then you find out what’s going on but have to hunt down a good doc and also pay for most of it yourself and know that most people will empathize but cannot understand what you’re going through. It took me a few months to get over the unfairness and just focus on getting better and not stressing out or holding grudges. This is one silver lining to the disease for me, and when I remember to count my blessings, it always helps.

      • c wolk

        i am searching for an MD who is board certified in Infectious Disease-
        tested positive in Connecticut in 2002 for lyme-treated
        co infection of babesia slightly positive on IGm -not treated. I share all the above symptoms 11 years later, which present cyclically- nightmare last month when we discovered black mold throught our central AC. (now live in florida) would you be willing to share your physicans information?

      • Greta

        Please share your LLMD. My daughter was diagnosed with Lime.

  18. jade

    I have had just homeopathic things, and I am still so ill, difficulty speaking, and thinking, remembering, driving, functioning, be indpedent, higher thinking gone half the time, I want anitbotics, I got so ill so fast, no drs in time diagnosed, until I got one, but late stage chronic, years of being so ill, and now I find the most solace in support from other people with lyme, cause no one else fully understands, how could they, so yeah like wanda said, we have each other, and it helps some, be strong fellow lyme patients. gentle hugs indeed!

    I do hope I can get well, and help others, being in nature is my fav, more natural, spiritual, if I can get out of this, somehow…

    • Hey! I feel ya Jade. I forgot how to read, write, walk and talk, and had to teach myself all over again with first grade grammar books. I would spend hours trying to figure out where commas and periods went. I went paralyzed, from my feet up to my mouth muscles. I had amnesia, and went back to 2009. I had over 10 grand mal seizures a day. I quit antibiotics, and picked up Stephen Buhners book, “Healing Lyme” one day and decided to start his herbal protocol -it just made so much sense. For the first time, I understood the protocol and knew it was absolutely necessary. My friend and I started on the same day. He does not have Lyme deep in the heart, brain, nervous system and spinal cord like me. He is doing better, working, playing music again, and driving. Even I am able to write and work again, and my brain fog is gone. Go to buhnerhealinglyme.com for more information if you want to learn more, you don’t really have to buy the book. I know what works for me won’t work for everyone though, so I am in no way trying to push you. My herbalist studied extensively as an apprentice under Buhner, and actually had to cure himself from Lyme twice using the Buhner protocol .Email me if you want my herbalist’s name. He is not money hungry and know what he is talking about. shelleywhitem@gmail.com

      • Rita

        Check out the “rife” machine. it is a machine that puts frequencies into your body that destroy the bacteria. I lost the use of my hands and all my joints were incredibly painful. I’ve had other symptoms come and go, but the joint pain was the worst and I am a massage therapist who could barely bend my fingers. my thumbs did not bend at all for months. After purchasing a good rife machine I have full use of my hands again, the pain is all but gone and I feel much better all around. I think it works because the frequencies can penetrate every organ and even into the bones. they have no safe hiding places. these frequencies eventually shatter them and you begin the hertzing and cleansing and just keep up until they are all gone. Be sure not to buy the cheaper model if you decide to try this. not all rife machines have the kind of frequencies that work.
        If you want more info email me at tiwane7@gmail.com

    • I forgot to mention, I am out of my wheelchair and even running again. I am also back in school full time, something I couldn’t have handled even 5 months ago!

    • i agree with u 100 percent…doctors and people who have never heard of it or see it dont understand,and u are rite if they find it early u can be fine but that is the whole problem …i was diagnosed 13 years ago my short term memory is bad i cant drive cause i forget were am going,i have the insomnia that is a symptom and all my joints hurt…when u first get it u become very nervous…i was dieing slowly..i lost my job because i could not work and had no family to take care of me..i became homeless and sick …i tryed to get disability but at that time lymes was not considered a disabity…so finally i had a stack of mental and physical illnesses to get disability..but it took living where ever i could for years before i got it…All of us who have this disease noes it exist..and it is alot of suffering ….

  19. Wanda

    People have to understand that we are all defferent and what worked for one may not for others, I myself have tryed it all yes, including homeopathic remedies with no help. It also depends on how quick you are to start treatment after the bite. The other problem is when people hear of the symptoms such as joint pain, muscle pain, fatigue they think it’s no big deal and wonder why we complain so much. But when you combine that with countless other pains and the fact that it’s a constant thing day in and day out its hard to hear things like yeah you should have been cured already. For all us Lymies that suffer in silence. We have each other, others don’t get it. Hugs :)

    • I would recommend an Ayurvedic doctor that focuses on cleansing the liver and other organs of the body that keeps you clean, and on a balanced lifestyle. Andreas Moritz books on health and rejuvination is a excellent guide to become the master of your own health again, even if you got Lyme, cancer, AIDS, Parkinsons, Psoriasis(wich i got) etc. If people just would realize that sickness, no matter what name we give it, comes from the same source, then alot of people would live more happy lives. We should stop treating theese symptoms as disease and start going to the root causes.

      And to you guys who have tested it all, don´t give up, because i can assure you, no one has tested it all. There are always more ways to heal yourself, naturly and holisticly.

      Our bodies never wanna be sick and never tries to kill us, it´s always in the buisness of making us balanced and healty. It´s our lifestyles that makes us sick.

      With love Henrik

    • Maria Neville-Smith

      Try the Rife Machine an electromagnetic current machine that can resonate above the frequency of the Lyme and nock it’s frequency out. I’ve been using mine now for about two years I wouldn’t be working if it weren’t for it. TruRife@aol.com. This along with particular antibacterial can help kill the bacteria

      • Linda Southern

        Yes! Rife is half of my treatment. If you do it yourself you really need to educate yourself on it. My body needs much more detox modes from the rife machine than most…you need to make it individual. I believe that I will get all of the bacteria out of my body and so dos my practitioner. Being able to heal and pinpoint all of your co-infections is key. I have had 12 so far. Herbal antibiotics, herbal supplements, detox and Rife. Muscle tested specifically for me is what is working.

  20. Taska

    The scariest part of Lyme is the bullshit politics behind the scenes keeping those of us whose lives have been affected and often thrown into a state of utter debilitation and disarray in the dark. We suffer while the stalemate we know as Great Treatment Protocol Debate will continue being dragged out by legislative policy blockers, meanwhile research is stalled through lack of funding, and information is kept in the hands of those who might profit rather than heal. I was infected in the early 90′s- undiagnosed until a reinfection 4 years ago.thanks to 3 little ticks whose work left me covered in lesions and bedridden made it impossible to ignore. Sadly, between the earthly 90′s and now; I unwittingly passed on Lyme to at least one of my twins born in 97. Today there are ways, precautions and protocols, to keep unborn children safe from being infected while in the womb. My 15 year has a chest port and hasn’t been able to attend school regularly for 3 years.
    Watch the film “Under Our Skin” free on Hulu, & YouTube for more detailed information about these statements.

  21. Shelley White

    Tricia,

    You are welcome, and thank you. I know there is much debate surrounding contraction from mosquitoes, but I have never heard an account from personal experience. What an eye opener. I hope your son is okay.

    And to everyone else, thank you for reading and be well.

    • idaho sandy

      add to the list; biting flies, dust mites and mosquitos. All verified. Not just ticks…. Read Buhner’s book “Healing Lyme”- excellent and thorough study and easy to understand.(well mostly easy…;o)

  22. cindy r

    I was bitten by a tick and found the tick running down my arm. I got the bullseye rash. I went to the doctor and got the antibiotics and test for Lyme Disease and was told I didn’t have it. I knew that the testing could be faulty but just kept that in the back of my mind. After several months I had a weakness feeling on my left side of my lung which eventually felt painful and then felt like my lung wasn’t even working. Luckily I had been reading about food grade hydrogen peroxide therapy. It can cure Lyme Disease. I took and still do take food grade hydrogen peroxide baths in non chlorinated well water and take the food grade hydrogen peroxide drops according to the prescribed schedule. My symptoms are gone but do come back if I go a long time without this treatment. I believe the spirochetes can hide deep in your cells but they show themselves and cause problems when they breed. I totally believe that if I keep after them with the hydrogen peroxide I will or have gotten rid of them completely. Please read up on this therapy for some relief and help. Your body makes hydrogen peroxide naturally. It is naturally in rain water. Farmers spray it on their fields because plants love it. It’s fascinating how it works. Some people have gotten hydrogen peroxide infusions for various aliments even cancer.

  23. Tricia

    Thanks for writing this, the more accurate info out there, the better. It’s not just ticks though. My son got an EM rash (proof in itself of Borrelia infection), which was confirmed by two doctors, from a mosquito bite.

    Have a great day.

    • Helen

      True, My son had it from a spider , I killed the spider so it couldnt be tested but he did get a large red circle (bullseye) around the area of the bite which was his ankle. So that was the proof .

      • Only 50 % of bites (maybe less, have the classic bull’s eye formation. Mine was a big 6-8 inch swollen bright red rash which turned almost black then back to red and then faded.

    • It’s also believed to be transmitted through sex and in utero.

      • Mary Lou

        Yes, my husbands doctor said it can be transmitted by sex, and also on to your children in utero. I have a friend from church who’s niece has Lyme, and her husband. They were very young, and had children, and the children were born with Lyme. It’s all so sad. More than sad. Our LLMD also said mosquito, biting flies (horse flies) not just the tick. Our LLMD also has Lyme.

  24. I have been cured from Lyme by classic homeopathy by just telling about my symptoms as i was not known with the disease after months later. Only when i saw the picture of an infected bite i remembered the curious circle around it i had days after i took away the bug. I went to my Homeopathic doctor and told her about my findings, she shrugged and said i was cured because if the symptoms i showed and a disease is just a name. After like 20 years i am still perfectly well, i never get seriously ill, flues and whatever comes goes fast away and never get serious. If it didn’t worked such treatment i should be on a wheelchair by now if not death.

    • Melissa

      I’m happy to hear that you are doing well with you Lyme but the honest truth it the disease will always be in your body. You are more than likely in remission. I have had Lyme for 18 years did acupuncture for treatment 6 days a week double treatments for a year straight because I’m allergic to medications. I went into remission from 2001-2012. When I was in remission I felt really good other than the RA my body had from before i found out I had Lyme and I still had chronic migraines. In August 2012 I started to feel funny just not myself but I let it go now as of the end of December I found out my organs were failing again and now my memory issues are back and Lyme has come on full force again. I am not the only person that has gone into remission for years. My LLMD that I was seeing went into remission for almost 30 years before his symptoms came back with a vengeance. I’m not trying to be mean but I’m just being honest. Once you have those spiros in your blood and you have been diagnosed with Chronic Lyme it goes deep into your cells, bone, organs, brain and skin and can lay dormant for years after treatment.

      • I am close to crying, and I do not cry. I know what you say is true, but not all are doomed, if I believe this I will die. Not for me, I have adjusted to it, lucky to have a husband that stuck around and people to help me. But God forbid others I love. I live in fear as they are symptomatic again and just writing this makes me ball., I try to deny it not think about it but it is to the point it can no longer be denied for muchl longer. I am not sure treatment is not worse than living around it but unfortunately living around it can become impossible. I guess it is time to consider lyme dr, again for at least one. I would give anything to take it from them and I pray I am wrong, I could be. I know two vets who do quite well they work long hours and I know of others who have gotten well and stayed there. Thank you for the article as I might try the garlic but I believe it put me into a herx from Haiti. There has to be hope.

  25. Everyone coping with Lyme disease should know about Allimed, a high potency stabilized garlic supplement. I am not taking it for Lyme disease but I did some reading of testimonials from others taking Allimed and quite a few were extolling the healing properties of it in regards to LD. Just passing it on.

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