The Fatal Truth About Lyme Disease: What Everyone Should Know


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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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  1. 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….

    Reply
  2. 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

    Reply
  3. 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..

    Reply
    • 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!!

      Reply
  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.

    Reply
    • 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.

      Reply
    • 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.

      Reply
  5. 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..

    Reply
  6. 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!…

    Reply
    • Hope

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

      Reply
      • 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!

        Reply
        • Hope

          Thank you, I really appreciate your response to my question.

          Reply
    • 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.

      Reply
  7. 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.

    Reply
  8. i have sudffered with all of the systoms for 5yrs or more and no help from doctors all of them ran the ELISA test and that was it, i just recently asked for the western blot and it came back with 1 marker, but had been taken dox.. a few yrs ago from an eye doc,so when i saw the Doc it was still the same answer, luckly i had know about the 1 marker and insisted on getting at least Dox back, what a rodeo, i have been at my wits end just trying to get some help, i also think i have a additional parasite in my system, but know body takes the time!!!!!!!

    Reply
  9. I have had great success with Lyme disease! You can check me out on my website which is: http://www.drbigelsen.com. Also, you can buy my book online “Doctors Are More Harmful Than Germs”

    Reply
  10. I pray for your situation and hope that things are going much better for you. I had 4 negative test results, from Neurologists. They would always come back and tell me that it was neg.and that went on for 5 years. Until, I finally found a Lyme literate Doc that happen to be close to me..or I don’t know if I would have ever found out. I probably could have never known, unless..I had died with it.
    I pulled a big sheep tic off of me, back in ’08 and never thought @ keeping it for testing..until, after I got all the symptoms.I could have by-passed several years of suffering, if only I had got it checked.
    When, I got to the Lyme literate Doc…he ran the tests and it come back positive that I definitely, had Lyme. YES, there is such a thing as chronic Lyme! I am living proof of that. I have suffered with it for years…and no one could tell me that I had the disease. :o
    I know that there are so many others out there…who are still searching for the answers and not finding them. You have to seek out a specialist in that field and find you a Lyme literate Doc..even, if you have to travel. It would be worth it. I am sure, there are others who have also been given the same negative test results from a NL..that should have already been diagnosed also and being treated for it already..like me.
    I believe that the all the NL should HAVE to update their system and have to require more testing be done. That ALISA testing..is NOT doing the job…so, they should get a better system. There are too many people suffering with Lyme to be ignored. And, I have suffered for way too long with it…and believe that I could have died already from it. I know that I have been blessed to still be around and I Thank God everyday. I pray that it isn’t too late and the disease hasn’t gone on…for too long. I have been hurting around my heart, for the past few months..and read where 3 people have died this year with heart complications, from Lyme.
    Prayers to you and wish you all the best of health. God Bless you..and pray that I can get this under control, but I have other things wrong with me on top of it…that is making it harder. I have Addison’s disease, Fibromyalgia, Candida(which, I have to get under control of first..or it will grow out of control. Means no sugar or gluten for me. :P I do pray that I can keep going…and if not get completely well…at least, get better. :)
    Prayers for you too…

    Reply
    • I have had excellent success with Lyme disease. Look me up.Good luck to you!

      Reply
    • Sandy Doerty

      So sorry for what you are going through! A friend of mine has chronic lyme and it got so bad last year she went to an inhouse clinic in Arizona for 90 days leaving her hubby and 5 kids as she was literally near death. You wouldn’t believe how well she is doing! Back to life again. I can find out the Az. info if you are interested, it may save your life…. God bless, Sandy

      Reply
      • I am interested please.Please email me at weedwoman7@hotmail.com Thank you. I have the not being able to lift my arms symptom. Was given a diagnosis of a\typical ALS. Another doc upnorth says Lyme. Was given a tincture but my body is still slowing down, dying.

        Reply
      • Renee Zaya

        Could you email me the info on the AZ place she got well at? Thank you! Rwrightsox@comcast.net

        Reply
      • Antoinette Lewis

        Can you email me the information on that in-house clinic. My daughter has had Lyme disease for 3 years now and she is giving up. Thank you

        Reply
        • Sandy Doerty

          Shea Medical in Scottsdale. They have a website and a facebook page. My friend got her life and health back after 60 days here! Best of luck to your daughter!

          Reply
      • Karin Alyon

        Sandy where is this Arizona clinic you are talking about? I really need to know for my friend, she’s suffering from late stage Lyme Disease and it breaks myheart to see her life melting in front of my eyes. can you email me at alyon.karin @ gmail.com ?

        Reply
        • Sandy Doerty

          Shea Medical Center, Scottsdale. They have a Facebook page too. Best wishes!!

          Reply
  11. I can relate. Just found out I have Lyme’s disease and probably had it for years. I’ve been diagnosed with Fibromyalgia, C.R.E.S.T. syndrome, also Hashimoto’s syndrome ( bow tie thyroid) and a new disease that involves not being able to raise your arms. I don’t even want to look it up on web med.
    Now, I know the answer to all this is probably Lymes….my test showed negative but my doctor was smart enough Thank You Lord, to read on down the list that showed I had multiple signs of having it. Why oh why do the tests say negative when they include that the results below are positive if you have lots of markers. For pity sakes, they just had 4-6 weeks to figure that out. So sending a negative but read the print below you might or are positive. Which I was. Does anyone feel as frustrated as me about the testing?
    So now step 1 is get into the specialist closet to me in Columbia, Missouri. Dr. Crist. He has a 6 month waiting period. Step 2 for me is to be gluten free and use a diabetic diet. I bought a book online about gluten free and am reading it now. I found out that Big Lots has Bob’s Red Mill Gluten free products.
    I have been making whole grain, organic foods in Mason-Kerr jars to be the answer to an ez meal. Add liquids and proteins and have a really good meal ready with organic bread baking in oven while soup is cooking. So now I need to change that to gluten free. arghh! Will I do it? You bet my life I will. I’ve been trying to eat healthy for years. I’m not giving up now.
    My doctor told me that Lymes mask other diseases. All the medications I was taking to help me about killed me February 15, 2014. That was a scary day in the hospital. I don’t even remember half of it.
    I will do my best to keep this blog updated with hopefully my progress.
    Also read on Dr. Crist website how we need to have supplemental vitamins, I am Vit. D deficient and have a prescription for that. We probably need amino acids & fats. ??? (my brain doesn’t remember everything so look it up) Deep massages and drinking lots of water after. Which at times would probably be too painful for me to do. There’s more but the mind is too tired for me to go on. Go to his site: Dr. Crist, Columbia, Mo. Good luck and God Bless. Oh yeah, and treatment could be 2 years of antibiotics. My doctor is well tuned in to the Lymes because she has it too.

    Reply
    • I have written several times about my success with Lyme disease. Just look at my book on Amazon “Doctors Are More Harmful Than Germs”. If your doctor is agreeable, there are ways that I can treat you in the distance.

      Reply
    • SD

      God speed to you Willa! I hope you don’t have to wait 6 mo. to see Dr. Crist? Gluten free is super important and there are lots of good brands and lots of stores carry them now. Lots of fresh fruits/veggies too. Green smoothies and no sugar is essential though difficult! Lots of good info online too with supplement info.
      Probiotics are extremely important too when going on antibiotics. Find a good one and start them now! They will keep your gut healthy/balanced. Natures Bounty makes a good one. Remember, tons of foods are naturally GF so its mainly bread you need to substitute. :) All the best, Sandy

      Reply
  12. Juilius Springs

    Just thought I’d let everyone know that I have used Shea Medical and I was very impressed with their treatment options for Lyme disease. They also have some very informative articles worth checking out on their site http://www.sheamedical.com

    Reply
  13. Terri James

    I was first diagnosed with strep throat four years ago. The antibiotics I took depleted the good bacteria in my GI system, resulting in what’s called C-Difficile. I was never the same after that. I was experiencing extreme fatigue, memory loss, brain fog, lack of focus and concentration, disorientation, blurry vision, red swollen eyes, respiratory challenges, shallow breathing, weakness, GI pain, neck pain, neck creaks, jaw pain, slow healing from surgery, sore throat and cough, insomnia, hair loss, mood swings, irritability, and increased allergies and sensitivities.

    I went to my family doctor on numerous occasions to try and resolve why I was experiencing all these symptoms. She gave me numerous tests including x-rays, ultrasounds and copious blood tests and sent me to specialists to test for things such as Crohn’s disease, Celiac, MS, Chronic Fatigue, fibromyalgia, et al, which all came back negative. She then wanted to prescribe anti-depressants so that I could “live” through the symptoms of the Chronic Fatigue.

    I said that I didn’t want to live like this, having virtually no quality of life. I wanted my old life back with energy and vitality! At this point, I was only able to go to and from work and then I would collapse in bed at night to conserve energy for the next day.

    Then, I was referred to Envita. I had tests done and was diagnosed with Lyme disease and heavy metal toxicity. Upon treatment, I immediately saw results, but it’s taken a year to rebuild my strength and feel like myself again. Thanks to Envita, I’m slowly regaining my former active life, including dancing and most of the symptoms from Lyme have completely disappeared.

    Reply
    • Silvie what was the treatment that Envita gave you? I mean you didnt tolerate ABX and developed C.Diff. What happend then?

      Reply
  14. Igenex is the most reliable test. Please include in your article.

    Reply
    • I look at Lyme disease differently. It is not the germ but the weakened body that it is growing in. I have found a major majority of cases had some type of medical or surgical procedure within 2 years prior to that diagnosis. I don’t believe that we have an epidemic of ticks, however we do have an epidemic of medical doctors, drugs and procedures.

      Reply
  15. Rachelle LeMibd

    I’ve had Lyme for 35 years and contracted it in Coastal California. I was misdiagnosed for 30 years. There is such a thing as late lyme, chronic lyme or whatever they don’t want to call it. After diagnosis I was given doxy and was bedridden for 4 years, denied private disability and SSI, because I wasn’t sick according to them. I had 54 separate symptoms and some of them severe. We moved from CA to Houston and I found an amazing LLMD. At the same time I found ACT, Advanced Cell Training. With these two amazing therapies, I have recovered to the point that I am out of bed, have some sustained energy and am well on my way to recovery. I am on no antibiotics. We are still in the process of resolving some issues such as Chronic Fatigue – IDS, Psoriatic Arthritis and Celiac that I have but I am positive that they will be gone soon. I am thankful to ACT for the amazing method of healing that they taught me. I know now that even if I am bit by a diseased tick my body will not get sick. It will know how to take care of the problem. If you are serious about getting well, not just from the Lyme but from all the co-existing problems that come with it, check them out on FB. It’s a bit out there but I am certain that in the months and years to come people will become more familiar with Healing Codes and linguistic healing. All I can say is that it worked for me when nothing else could or would. What do you have to lose?

    Reply
    • Ann

      Hello Rachelle,
      My daughter diagnosed with lyme disease and she is on antibiotics for more than 4 years not continues. she got better and then she gets sick again. can you please tell me the name of your doctor in Houston please?
      thank you

      Reply
      • Try a Dr. John Trowbridge. Tell him Dr. Bigelsen sent him. If he has any questions have him call me. He is very good!

        Reply
    • John Jonczyk

      Rachelle, please email the link to olesno@optonline.net. My daughter has lime and needs help.

      Reply
      • Lee

        Can someone fwd me this link as I too am suffering from Lyme for a number of years. Happy Holidays :)

        Reply
    • Hi Rachel would you please email link to byrd56@aol.com, thanks

      Reply
    • Hi Rachel. Can you send me the info on ACT to my email. carolcaruso57@gmail.com. I have 2 daughters with chronic lyme.both suffering for over 20 years. Thank you

      Reply
    • hi rachelle please send a link to adders45gmail.com i am seriously unwell and need to get better thanks

      Reply
  16. Ruth Hergenrother

    In August the summer of 1996 I was in the 3rd trimester expecting my 3rd child. After a trip to Queechee Vermont, the following week, after a shower, I discovered a large circular mark with bruised looking center on the back of my right shoulder, It did not hurt or itch nor was it raised I had been feeling awful and our whole family had been feeling sick with stomach bug symptoms, My toddlers pediatrician discovered he had somehow contracted giardia a protozoa infection commonly found in contaminated water where beavers live. My OBGYN tested me and admitted me to the hospital to treat the infection and monotor me because I was at the end of the pregnancy and I was feeling terrible. During my admission I showed the strange looking bulls eye mark on my back to the nurses and the doctor, the response was it was probably a nasty “bug or spider bite” and quote That it had “nothing to do with why I was admitted to the hospital” End of quote. I began having complications with my pregnancy following the treatment for giardia dizzy spells headaches sensitivity to light sound, flu like symptoms and joint pain, All dismissed by my doctor due to the fact that I was pregnant and due to deliver my child in the upcoming weeks. In October still feeling sick my blood pressure spiked and I developed a fever The doctor decided it would be best to induce labor the next day. My baby was delivered naturally a day later he was a little blue at first but otherwise a healthy 7lb12oz. In the following months It was discovered I had probably had a small stroke during delivery and that now became the blame for all of my symptoms I still had the bullseye mark on my back for months It eventually faded to what looked like a round bruise in the center many months later. at that point I was now under the care of a neurologist for severe headaches allover body pain night sweats and flu like symptoms that waxed and waned. Over time now under the care of a rheumatoligist who diagnosed me with a rare autoimmune disorder. In the following years the doctor pumped me full of predisone and methotrexate steroids to calm my immune system perplexed as to why I still felt sick? I Came across a polaroid pic of the rash I discovered from 13 years earlier My eldest son chirped “Mom that looks a lyme disease rash!” He had seen on the internet. Supported by a dear friends assurance that it was most likely exactly what The problem is! The following week I presented My rheumotoligist with the poloroid pic of the rash from 13 years earlier and a blood draw kit I had mailed to me from IGENEX labs. Needless to say The doc. Looked unhappy with me questioning my diagnosis and reluctantly agreed to sign igenex blood draw. When the blood work returned to me positive I promptly set an appointment to go over the results with him He took the tests into his office leaving me in the exam room he wrote across the top of the test results “negative according to mass board of rheumotoligy” and he asked his nurse to refir me to another rheumotoligist for any further treatment.???!!! I eventually found a lime literate neurologist in ayre mass who diagnised me with “chronic neurological lyme disease” And promptly ordered a pic line and a month of rocephtin. During the month of treatment about 30% of my symptoms improved. Due to Conflicts with legalities of treating lyme disease in New England My doctor could only offer me one month of treatment and pass me to another doctor. The doctor I was refirred to next never answered my calls. I found a doctor in boston at new england medical center for infectious diseases who offered me a month of doxicycline that I threw up every time it hit my stomach! Here I am 18 years later still sick this illness has robbed me of my good health I still suffer with headaches flu like symptoms that wax and wane and depression as a result of being so sick all of the time! I dont want another pill or shot! I want to be cured! I want good health again! ENOUGH

    Reply
    • melissa Nov.

      I am so sorry to hear about your troubles. I was just officially diagnosed with Lyme this past Friday. What is funny about my case, is that my first husband developed Lyme in 1994, while I was in nursing school. He worked out in fields and came home one day feeling horribly sick, and he had this huge bulls-eye rash on his calf. I said, you have Lyme, he looked at me like I was nuts. We were learning about the subject while in nursing school. Needless to say, he want to various doctors who dismissed him as a nut. He was a healthy 6ft6inch man, who was now hardly able to walk, with recurrent flu-like illnesses, migraines, anxiety, panic attacks, spinal stenosis, and knee pain that put him in bed. He finally found someone who treated him in 2000, after many doctors and years of being undiagnosed.

      Funny, thing is that in 1998, I developed my own weird symptoms, I woke up one morning with a severe migraine, facial numbness, facial drooping, panic attacks, severe anxiety and just not feeling right. I went back and forth to doctors for years….. and years… and years. It all got pointed to having an anxiety disorder or female hormones. My first husband and I divorced but still keep contact because of the kids.

      One to 2014, my second husband comes home from work with a huge rash on the back of his neck… guess what, a bulls eye rash and swollen glands, the prior week he had had a severe flu-like illness. I told him to see a doctor, and he was diagnosed with lyme disease related to the rash and symptoms. Within this same time period, I notice that I have suddenly developed this weird joint pain (never had it in the past); The kind of pain that I can’t describe. It is more like a tingling and numbness of both knees that won’t go away with pain medicines, and it keeps me up all night. The weird joint sensations also travel to various parts of my body, shoulder, wrists, fingers, etc. I decide to go to the doctors thinking that I have an autoimmune thyroid disease, because of the symptoms that I had from 1998 until now. (I also have thyroid nodules, thyroid antibodies, and a multi-nodular goiter); They finally give me a referral to see an endocrinologist, and they run a few lab test for the joint pain: rheumatoid factor, sed rate, and they do a western blot because of living near the woods.
      Guess what, the western blot comes back positive for lyme disease.

      Now, the question is – I never remembered any tick bite… never had any rash. My test shows positive IGG and IGM… IGG is old infection and IGM is new infection. What are the chances that my first husband gave me lymes. I know the CDC refuses to state that lyme can be sexually transmitted…. but who really believes what a government agency tells us? There have been many studies that are contrary to their research, that do, in fact, state that lyme can be transmitted sexually.

      What are the chances of husband #1 hving lyme, my having weird symptoms for years, husband #2 getting lyme, and me finally becoming positive. I lived in South Philadelphia with my first husband, where ticks weren’t too predominant. Now live in suburban new jersey, where there are many trees, and deer.

      I am now on 3 weeks of doxycycline, and my only concern is that this will not kill the issue if I had contracted lyme years ago.

      Reply
      • Hopefully you are working with a Lyme Literate MD. Like you, I don’t ever remember a tick bute, but have suffered with symptoms for years after hubby was bitten by a tick. My whole family has Lyme and co-infections.

        Reply
  17. domonicana

    I actually found the tick on me while I was showering. I didn’t realize it was Lyme disease until I notice the symptoms. I went for labs today and waiting results. My doctor has started me on antibiotics and hopefully this help.

    Reply
  18. All I know is 2009 tick on arm with Bulls Eye, 20 day’s of Doxy and I’m had the “flu” ever since. They’ve had 20-30 years to figure this out…the only thing that’s “complicated” about this disease are the people and organizations that are making it as such. They can contunue to spin this however they want, but Lyme will continue to spread as will the suffering…they will end up with mud on their face given this debacle.

    Reply
  19. Martha Stefanski

    My grandson was not tested till he had symptoms that prove to be Lyme Disease. 18 months was the estimated day of contact but Infectious Disease Specialist who

    Reply
    • Look me up and see my article “The truth behind Lyme disease”. I have had tremendous success curing Lyme disease. As you will see, I do not believe it is from the tick. Have you had any surgery the past two years?

      Reply
      • Renee

        Where can I find your info?

        Reply
        • I live in northern California. Where do you live? I approach Lyme disease very differently and my results have been excellent!

          Reply
          • Renee

            Thank you for your reply, I am in MA & see a LL naturopathic in NH&have been in treatment 3 1/2 years now sick 11 years undiagnosed for over 7 years. Any recomendations I would appreciate, lyme & co’s ruin lives & it’s hardest battle I have fought even my cancer surgery I conquered & it started with that& ive never gotten well again! Thanks again!!

            Reply
            • That naturopathic physician should inject the scar with procaine and what is called the Franckenhauser points also. Following that you should get someone to do some craniosacral manipulation and you will feel much better. Surgery is what I call a legal attack with a knife. It is the biggest cause of trapped inflammation which weakens the body. If your naturopath has any questions, he can call me.

        • You can just Google my name and a lot of information will come up. If you want to contact me, my email address is: harveybigelsenmd@comcast.net

          Where do you live? I may be able to find someone out there who can help you.

          Reply
  20. Elizabeth

    Our son had a deer tick in Nov and then had an odd bruise on his leg looked like a bruise but white in the middle, like a donut. Can’t imagine what could have hit him to cause a bruise in that shape. MD said it was a bruise not a Lyme rash. At the same time, right knee swelled. Son has very mild JRA in left hip, MD said it was JRA but JRA dr said no to arthritis. Other random issues at same time. General blood test came back neg 3 weeks in. Fast forward 3 months son is now presenting attention issues and trouble with school work even though no issues with content before. Could this be chronic Lyme?

    Reply
    • Google my name and look up my work on Lyme disease. I would like to know more about that bruise. The Lyme germ grows in the weakened body and injuries and surgeries are very important! I have had excellent success with “Lyme” disease by treating the structure of the physical body. It’s not the germ but it is the pond that it grows in.

      Reply
  21. Natalie

    I was diagnosed with chronic Lyme disease at the age of 8. I went through horrible joint and muscle pains. My legs would get swollen and my jaw hurt so bad I lost so much weight. I had to be carried everywhere and pushed around in a stroller. Even that was painful. I lived in CT and had flu like symptoms and fatigue but doctors just brushed it off because they thought it was the flu. 3weeks later we moved to FL and everything got worse. We didn’t find out it was lyme until 3 months had passed. I’m 23 now and haven’t gotten any symptoms except my fingers get swollen sometimes and hurt. Reading this information it makes me wonder if it will ever start up again.

    Reply
  22. Who is Shelley M. White and where is your bibliography and citations?

    Reply
  23. geoffrey keystone

    I have been battling Lyme and its co-infections of Rheumatoid Arthritis, and countless others, for 8 years. It has heightened previous PTSD, BiPolar, kidney stones, a history of head injuries, years of painting with spraypaint, no cartaledge in my knees, inverted buldging discs with severe pressure cracks in my lower lombar. My Rheumatologist told me I have the body of a 65 yr old, my ankles and feet swell(a full size, i have to have 2 sizes of a sneaker to accomodate the crazy swelling. I am a professional artist, brand manager, guerilla marketing, avid disc golfer, and footballer(real football), all around athlete(was a professional snowboarder and skateboardered everyday, among many other things. I have been treated with 3 rounds of antibiotics, 2 oral, one 6 week IV. I have tried every herbal remedy from cinnamin and honey to soaking raisins in gin and eating 3 a day. They all helped me for a few minutes, for a few weeks. At 25, I was 112lbs wallking with a cane. I bounced back very slowly after the IV antibiotics and have NEVER been relieved of my physical pain and mental anguish. Heavy Stress and Anxiety is the number one reason and situation that allows Lyme to wreak havoc when you least suspect it. After surviving an electrical fire in my condo, the flame was torching the ceiling directly bellow my bed…after loosing everything (a true blessing in disguise.) my parents split up 3 days later, and as a man in his mid 20’s, saying my life flipped was an understatement. Over the next few months i was bombarded with phone calls, depositions, and being sued by the other 16 tenants (eventho it was not my fault, the building had over 350 firecode violations in the electrical alone, I remember the flame, the heat, the power of it….and the blue flames pulsing from the outlet through the cord of a lamp, to the chair where i sat. I had an art show the following friday, all of which was lost in the fire, but i spent the next week getting it together and putting the show on. It wasnt until me and my wife settled in a house in South Philly that shit got real. Like being hit with a ton of bricks, my life stopped dead in its tracks. While I was having flashbacks, night terrors, twitching, with extreme sensitivity to flashing lights and loud, especially high pitched noises, ie sirens, etc. I refused to lay in bed, i wake up everyday and dress as if its a normal day, to retain some normalcy. I am now 33, barely able to walk, with clawed hands that I am constantly retraining to hold a brush or pen. My mind, which was once sharp, witty, loving, and able to work through tough situtations….has become a reel of thoughts, ideas, running circles…only sometimes can I grab hold of one and work on it or do it, but with very limited attention span and excruciating pain. I have made myself stronger, with the help of my amazing wife, for whom i am grateful for everyday and hope I can show her more gratitude in the near future. My Pops, for so many reasons. My Mom, for being the best Mom, even in the face of the divorce. My brother for sitting with me day in and day out, while his dream was waiting for him in Virginia.(He currently plays in 2 touring bands, so proud of him)my acupuncturist Andrea, and just when i thought i was getting better, like getting tanked by a set of waves, I was knocked out…again. My dog, my anchor, my baby girl got Osteosarcoma and had her rear leg removed with the ineveitable on its way. We moved up to NEPA after that, where i got strong chopping wood and maintaining the home in the worst winter in 30 years. But when spring was still thawing, and summer was a very cool 60 degrees with extreme pressure changes, being that we lived on a lake, I never got my spring and summer energy boost and we moved back to Philly as my health started to fall again. This time tho, asking for help had me feeling like the boy who cried wolf, everyone just nodded their heads thinking it was just that day…well that day has become everyday, again…and finally my “cries’ have been heard. I push myself above and beyond what my body allows, but i dont know any other way. And now, after many amazing adventures, fighting lyme one step at a time….I will not go back on antibiotics and am pursuing a Colodial Silver IV treatment. I am tired of messing around, i am tired of the pain, i am tired of not being able to have normal friendships, and I am tired of being tired. I am not wired this way. The more you do for yourself, the better off you wil be. Trusting doctors, although we are taught too, is difficult. Trust yourself, so that the doctors trust you. Lyme is a dirty secret with a dirty past, admitted by the US goverment to have been developed by a Nazi doctor working for the US government. I dont believe it was intentionally set upon us, as the simplest explanation is often the correct explanation. A tiny bug gets caught in a gust of wind or attaches to a workers pant leg….and boom! an epidemic that rivals AIDS, except no one cares about Lyme, except Big Pharm. Doctors cant even agree on the course of treatment, and force patients into an endless spinning wheel that never stops. If you dont have Lyme, or arent directly involved with a loved one….you will NEVER understand and your opinion is worthless, if you know someone with Lyme…go out of your way to spend a few minutes with that person, every day, every week. That helps us feel normal and engaged in life. every doctor I have encountered wont say “you have Lyme Disease.” it always sounds something like this “your Lyme teder is very high, you may have Lyme Disease.” skating around it for fear of being sued and simply not knowing what to do. (As a side note, the authors ‘further reading’ are 4 of the worst websites in regards to Lyme. ) Harvey Bigelsen is a known profiteer of Lyme Disease, the CDC doesnt recognize Lyme, the government doesnt recognize Lyme, and anyone that says they can cure Lyme, is full of it. To those who are new to Lyme, i would like to extened a big hug to you. To their caregivers, be patient, listen, dont panic, dont worry…STAY POSITIVE and remain present and proactive. The most important treatment is the treatment of self. Make yourself get up everyday, find small exercises you can do daily, Yoga is a place to find these exercises, if you need help finding them…do as much as you can on the good days and the bad days. Be proud of the little things that you can do, and not angry about what you cant do. If you have a hard time eating, get Ensure or learn to make banging smoothies. dont be afraid to reach out to others, but always follow your gut. Until society recognizes Lyme and doesnt brush it off as laziness, we are all stuck in an endless battle, but you are not alone. My name is geoffrey partridge. you are more than welcome to contact me privately, with questions, advice, or for a shoulder to cry on. The only way to move forward is if we help each other do it together..Much LOVE

    Reply
  24. I recently discovered a small tick on the skin of a cousin who lives in Switzerland just think they can be anywhere.

    Reply
  25. Rick

    Over here in The Netherlands it is national Lymes Week – yes its true as we have the second worse record for Lymes in the world. I know 8 people from the local area I live in who have this, I was diagnosed with it last year, nasty illness. The Dutch government is funding a large 10 year study into this as its such a big problem and most newspapers are covering it. I suspect Annabella is a `plant` put here to rubbish anything that crops up, all websites have these planted people and most Facebook groups also. Usually set up by Big Pharma or national security agencies.

    Reply

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