NEWS: Dr. Phil’s chronic Lyme show to air April 13
A segment on chronic Lyme is included in a program called “Deadly Consequences.”
The Dr. Phil Show will look at the issue of chronic Lyme disease in a program scheduled to air on April 13.
Among the guests are Lyme survivor/TV weathercaster Brooke Landau, two additional Lyme patients, Lyme-literate doctor Chitra Bhakta, MD, and the IDSA’s Dr. Paul Auwaerter.
Here is the listing as posted on the Dr. Phil website:
Friday – April 13, 2012
Deadly Consequences
Dr. Phil’s guests say they’re dealing with serious illnesses that could have deadly outcomes. First, Annette says as a mother, she wants the right to euthanize her severely-disabled children, 42-year-old Jeffrey and 43-year-old Janet, who have been institutionalized for more than three decades with the rare genetic disorder, Sanfilippo Syndrome. Her only legal option is to remove their feeding tubes, which she says would lead to a painful and inhumane death. What would you do? Hear from acclaimed trial attorney Geoffrey Fieger on why he thinks the laws against euthanasia should be changed. Then, former model Stephanie Vostry, 25, says that she suffers from constant pain and seizures caused by what some doctors believe to be chronic Lyme disease, and others wonder if she’s faking. With natural medicine providing minimal relief, hear how she says she’s turned to self-medicating to dull her pain. Plus, chronic Lyme disease hits close to home for a Dr. Phil staff member and a San Diego weathercaster.
I am a victim of Lyme Disease also. I am also on the Ulster County Lyme Disease Comittee in Kington N.Y. I have battled this disease for 4 years now. My story is much the same as many who are traveling the hell road! I was misdiagnosed for 2 years. I saw 14 specialist….hospialiised 6 times in 4 different places …..,had several ambulatory rides to the ER and Tolstoy each time that that I DID NOT HaVE LYME! I had 3 spinal TAPS and 6 negative Lyme tests before I finally was diagnosed with this horrible disease. I lost my job and nearly lost my home due to the disabling effects that I encountered from Lyme. I had 56 of the over 100 symptoms that is associated with Lyme. I was poked and scanned and given several different diagnosis such as Lupus, MS , CFS, Fibromyalgia, Transverse Myalgia….and so on. I was also told that I was suffering from Post Tramatic Stress Syndrome because I had just had a house fire that nearly took my families lives. I finally and a positive Lyme test that proved that I had the disease. I under went 18 months of I.V. antibiotics . I started to regain my health very slowly. I did a lot of alternative methods of healing combined with the antibiotics. I am very grateful to be as well as I am right now. But as good as I am… I still suffer the residual effects of Lyme and sone of the co infections I have. This disease is a nightmare! The works needs to learn what is happening to us! The hush hush has to stop! Why is there so amby people suffering? Why is this being kept a BIG SECRET? The mainstream medical doctors DO NOT KNOW HoW TO TREAT LYME!,,,,,,,,,,, There needs to be more research! This has surpassed the AIDS epidemic! People have Lyme that don’t even know they have Lyme because the doctors are not educated enough about it to diagnose it properly and then when it is diagnosed the CDC tells the doctors how they are to treat it the WRONG WAY! Please do a story Dr. Phil …..,we need you ! Watch the documentary entitled “Under Our Skin” to learn the truth!!!!!
I agree so many people have been decimated by this illness and doctor ignorance. I too lost 10 years of my life to lyme disease. thankfully I was able to recover and I chronicle this remarkable story in my new book “Out of the Woods, healing lyme disease, body mind and spirit”, an award finalist for BEST BOOK IN HEALTH with USA BOOK NEWSs. I am looking forward to this show with doctor phil.
congratulations and let’s see it types change.
I’ve been sick for two years now and was left with Chronic Lyme. Although I had very clear symptoms including flu-type symptoms and horrific headaches unlike anything I have ever experienced before, the doctors still didn’t think to test me for Lyme. They just aren’t educated in this regard. I finally found a Lyme literate MD, thankfully and I am now seeing more good days than bad, although I am still dealing with the side effects of long term anti-biotic use, whenever I try to go off of them, my symptoms come back, one at a time until I am no longer able to get out of bed,so I continue to stay on them, along with many supplements. I am not 100%, but still so much better and I am able to function. I have lots of set backs, but I am learning that it is a day to day thing. I am so glad that more people are talking about this disease. So many people are unaware and don’t take precautions or have long term symptoms and never think to get tested for Lyme and the co-infections that exist. The more we bring this to light, the further we will progress and hopefully people will get tested earlier before they are left with a chronic problem.
Sorry to hear of your suffering. My dad had the same but died from it. Godspeed !
Barbara, I am so sorry to hear about your loss. I have suffered from Lyme and its symptoms for 15 yrs now. I was treated very aggressively for 7 1/2 yrs until most of the symptoms disappeared, then have been treated on and off for the last few yrs for recurring symptoms. My cousin too was diagnosed the same yr I was, but NOT treated aggressively. I watched her decline and get worse and worse as the yrs went by. She lost her battle to this dreadful disease 2 yrs ago, and I wish the medical community would wake up and realize that Lyme kills people. I will pray for you and your family, as I completely feel the pain that your family must still feel. God bless you all…..
I have suffered with Chronic Lyme disease for over 20 years. I am grateful that Dr. Phil brought attention to this devastating disease. I was not diagnosed until 4 years ago. I was told we do not have lyme disease in Tennessee. How stupid. We have deer all over the place. And, do the doctors know every tic?
I didn’t like the way he treated that poor young, beautiful woman by implying it was in her head. But, I’m so happy that she will get the help she so desperately needs.
Doctors, open your eyes! Just because YOU don’t know how to treat it doesn’t mean it doesn’t exist.
Katina,
My niece is battling everything said. Dead ends wasted time and money. Can you point us in the right direction, we don’t want to lose her.
I, too, have chronic Lyme disease along with 3 co-infections, all tick-borne. I have Babesiosis, Bartonellosis and Mycoplamosis. I have had it for approximately 20 years, during which I was diagnosed with Rheumatoid Arthritis. None of the RA drugs worked. During that time I had repeated episodes of what I thought were Myocardial Infarctions. My vision has been horribly compromised, I have lost the hearing in my left ear, I have constant (and I do mean, constant!) tinnitus in both ears. My symptoms include unbelievable pain and fatigue … pain in my bones, my muscles, my connective tissue, even my skin. Fatigue so badly that I couldn’t care less if you put a $1,000 bill on a counter 10 feet from me and told me I could have it if I just walked over to it. Headaches so bad that it feels as if my entire head is going to blow up and I wish it would, just to get me out of my misery. I have tested positive for all of the above listed infections and am now on several kinds of antibiotics, including a PICC line to deliver antibiotics directly into my blood stream. This is to get the meds through the blood brain barrier since my neuro symptoms are so bad. Horrible, horrible memory loss and lots of problems with word search. I have improved in some areas after finally seeing a world-reknown Lyme specialist in NYC. I live in Minnesota. My daughter also has Lyme disease and other tick-borne infections which have rendered her partially wheelchair bound. She has had it for many years, but before she was diagnosed, she and her husband had a baby. Not many folks realize that the Lyme causing bacteria, Borrelia burgdorforii, can cross the placenta. Hence, their daughter was born with the same diseases. Our family is going broke because so many of the meds and treatments aren’t paid for by insurance due to the rediculous guidelines established by the IDSA. We have just found out that my ex-husband has been diagnosed with Erlichiosis/Anaplasmosis and the urgent care doctor only gave him 100 mg Doxycycline bid and only for 10 days. That is NOT enough. To find a doctor willing to treat Lyme disease is next to impossible. To find one who has even remote knowledge of the disease is even more impossible. This disease is real. We are not attention seekers, nor hypochondriacs, nor malingerers, nor anything else most doctors label us as being. We are rarely, if ever, treated with respect once we mention to any health care provider that we are being treated for chronic Lyme disease. Thank you, Dr. Phil, for bringing attention to this horrific disease which destroys families financially and spiritually, as well as the relationships within the family unit. I just want my life back and a healthy daughter and granddaughter. God bless you.
THANK YOU LORD, AND THANK YOU DR. PHIL, I SUFFER FROM LYME DISEASE AND THE MEDICAL DRS. THINK I’M CRAZY THANK GOD I HAVE A LYME SUPPORT GROUP AND MY FAMILY AND FRIENDS HELP ME OUT WITH ANTIBIOTICS WHEN I HAVE SEVERE ATTACKS. NOW I FIGHT TO PROTECT MY FAMILY AND FRIENDS FROM SUCH A DEBILITATING DISEASE.
Doreen I have had Lymes, now Chronic Lymes for over 5 years so I have and know what you went through. With Chronic Lymes there is this grey area. Chronic means more than I don’t know, a year or more ? It doesn’t mean you still have the disease though. I had over 2 years of treatment when it was apparent that more damage was being done than good. When I got Lymes, It triggered Auto-immune Illness . Okay, so that means while I’m being treated my Immune sytem is attacking the bodies tissues and is also suppressed ? These are some of the things that need clarification, but this being on Dr.Phil, I’m sure it will be more of a novice show on Lymes because lets face it, I live in CT. and some people I have talked to have none to little info. about Lymes. now that’s a problem !
The Dr Phil Show was good, short but effective I think.
http://lymiebuzz.blogspot.com/
I was bit 7 yrs ago while clearing our propert in Saugatuck michigan when I got bit …I went to my neurologist and he stated that there was not lyme here….well after been misdiagnosed …I have been recently dx with late stage lyme and since then was cut off assistance due to not fibromyalgia but a lyme dx…this is so enraging of what cannot be done …I have an appt innew york to see dr. liegner ..I just have to say it just seems like a hopeless situation and need some prayers…I worked my whole life very active…sports etc..but now barely get out of bed due to herx episodes ..and chronic pn…
Doreen,
I would love it if you could contact me via email. I have a friend who is currently suffering from lyme and can not get a doctor to properly treat her. She is at the point of not being able to eat or drink anything and we are desperately looking for some kind of help.
Thank you Debbie Ratti
Wow! I was just diagnosed with Chronic Lyme. I have suffered with miserable foot pai for 2 years….saw podiatrist, neurologist, orthopedist and even underwent surgery for what nerve conduction studies called Tarsal Tunnel Syndrome. My pain returned post-op…My ortho started to look at me like I was crazy. He blamed my weight, which I know doesn’t help ….then he sent me to a pain specialist for an epidural (which the P.S felt was unnecessary.
I finally got so desperate for relief, I started Acupuncture. She noticed my scar hadn’t healed and suspected something wrong with my immune system. Specifically, she was concerned about Chronic Lyme.
Sure enough….my CD57 test came in at 40. I am so grateful for her insight and experience with Chronic Lyme. She has it as well. I am just getting ready to start supplements and actively am seeking a Lyme Literate Dr….
I think its just in time as extreme fatigue, fevers, short-term memory loss, twitchy muscles and blurry vision have become an issue over the last 6 months. I fear losing my job if I can not get my energy to return and pain to cease.
God bless you in your fight!!!!
Hi Dr. Phil; I was wondering if you would be interested in coming to cape cod and doing a piece on Lyme disease and the co-infections of same?
Thank you Dr. Phill for being bold enough to spread awareness about this monstrous disease that has destroyed the lives of so many people. I have been ill with this disease for three years now. My entire world has been turned completely upside down because of it. Most doctors I have seen believe that I’m insane, a hypochondriac and an attention seeker. I can guarantee, the greatest actresses in the world could never “fake” Lyme disease! Thank you for being our voice! May God bless you abundantly!
It will be very interesting to see which “direction” this episode goes. MY prayer is that the IDSA comes off looking like the bunch of insensitive, ill informed conspirators that they are; and that those, like myself, who have been suffering with Lyme disease for decades, get the compassion and sympathy from the audience and medical community that they deserve and need!! We’ve GOT to wake the medical community up in this country before thousands more die of this disease….and all the diseases that are mistakenly diagnosed as something else….i.e. MS, ALS, Parkinson’s, Alzheimer’s etc., etc.
I pulled an engorged Tick out of my right temple in May of 2001. (I had been canoeing and had a bandana on my head for many hours.) I plucked out the tick, screamed and threw it in the toilet. I was an RN working in a large clinic in Lyme Endemic Wisconsin! In my job, I gave information to callers based on situation, protocol and CDC Guidelines. I frequently answered questions regarding tick bites: Protocol was to “watch for symptoms for 30 days”. Come to the clinic if you notice flu-like symptoms or a target rash ….. no big deal! Dr.s there knew little about Lyme Disease. One dr. even asked me how to read the Western Blot Test.
I got a migraine 2 wks. after I was bitten, went to a dr. and told them that I had gotten bitten by a tick 2 wks. prior. She wrote, “Interestingly enough, pt. says she was bitten by a tick 2 wks. ago, but she will watch and seek medical help if necessary.” I got better. A few weeks later, I felt strangely ill. It was not like anything I’d ever experienced. I would be diagnosed with hormonal imbalance (which Lyme does), depression (which Lyme does), sinus infection, teeth pain, migraine headaches, gastoparesis, pain, nausea/vomiting/diarrhea….. all which can be caused by Lyme Disease and it’s Co-Infections . My jaw locked at one point and I saw a neurosurgeon who said, “no big deal”. An ENT at a prestigious clinic gave me an experimental spray for my sinus which burnt like fire and sent me to bed for a month. There were numerous tests for my heart irregularities which were always unfounded. I drove myself to the ER several times with classic heart attack symptoms. My temperature was subnormal. None of my body was spared. I was hospitalized for an 8 day migraine and an appendicitis (which went unnoticed due to all the antibiotics I’d been on) causing me to lose my ascending colon.
I could not be in a room with florescent lighting without getting a migraine.
After 3 yrs. I quit my job as a Triage RN. I was so ill. The first week I got on my computer (and my knees) and searched for answers.
I came to a website that I would later appreciate as one of the only places I could “talk” to people who understood. I fell on the floor in tears, then called my husband. The long list of symptoms listed matched mine! Though I was ill to the point of needing assistance to complete activities of daily living, I knew I could now treat accordingly. Little did I know that I would fight this disease for many years to come.
Through the website, I found a “Lyme Literate Dr.” in Missouri.
He did not insinuate that I had some psychosomatic illness, but diagnosed me based on blood tests and symptoms. More than that, he gave me hope! He spent 1 1/2 hours with me on that appointment. He gave me many handouts explaining my treatment and the part I must play. He even prayed with my husband and I.
I had to quit eating sugar and cut carbs. (Lyme Bacteria like sugar!) I lost 40 pounds. Lyme had caused me to gain about 25 pounds in a very short time.
A difficult illness, Lyme also causes a die-off syndrome called Jarisch Herxheimer Reaction. This causes a worsening of symptoms while your body detoxes the bacteria killed with treatment. This can sometimes take months!
I used Saunas, extremely hot 20 min. baths then laying under mounds of covers, enemas, copius amounts of water, oral adsorbents like charcoal and clay and other supplements.
I tried chinese concoctions that tasted horrendous, months of colloidal silver (an alternative anitbiotic).
I finally had to stop antibiotics and knew if I could not come up with a non-antibiotic treatment, I would not get better but worse!
I bought an Electro Magnetic Therapy Device (which I still use). It kills the Lyme Bacteria.
Slowly over a period of 6 yrs., my symptoms have improved to the point that I have close to normal days. I was fearful the first time I sat before it….. it looks rather “Frankenstein-ish”, but it works!!!!!! More than likely, I will fight this disease until my death.
Through it all, I have been humiliated by medical personnel, co-workers, friends and family.
Lyme Disease has been covered up!!!!!! Why?????
People are diagnosed with many things, when it is Lyme causing the problems. People die!!!!!
I shudder when I think about people who do not have a medical background as I do and take what the dr. says as truth!
The truth is: Few dr.s understand, it is a political disease and tests are NOT accurate!!! Besides, it requires more than a 10 minute appointment!
Courageous Lyme Literate Physicians and healthcare workers who know the truth and treat this disease often have their licenses revoked, their practices closed and prosecuted! (Even though people are healed!) They are the heroes! And so is anyone who has battled this confusing and multi-factoral disease, whether themselves or affected family members.
The word is getting out.
May the truth set the captives of this horror FREE!
Thank God for all of you who want to help!! I also have lost my husband in1995 and have been fighting for my life as well for 15 years..All I can say is Thank God someone is listening!!! Lyme KILLS
for Rebecca Wallace
RN…sick 9 yrs before dx and now tx 4.5 yrs with abx, herbals, sauna and HBOT. Am interested in other tx. And somewhat, actuall quite a bit better but still disabled. But I no longer have 15-20K to spend on medical annually. Can you share what you are doing?
Thank you, Rebecca Wallace for posting. I, too, have been through just about the same ordeal as you. It is such a hellish disease! Would you be willing to email me with some info about this Electro Magnetic Therapy Device you speak of? I am desperate for some relief. My worse symptom is heart issues, which I have been to three Cardiologists for with no relief. I would love some more info. And, Dr. Phil, thanks so much for airing this program. My prayer is that things will change for those of us who are suffering. Things need to change!
re: electro-magnetic therapy. I use it twice daily, and it HAS helped with pain and energy levels. I purchased the MRS-2000, recommended by Lyme-treating docs in San Diego. Pricey, but I’m glad I have it. The thing you MUST realise is that, just as the disease ‘disseminates’ and spreads throughout body systems, the treatments MUST be holistic and comprehensive: aggressive antibiotics alone will not re-balance your messed-up immune or nervous system. There are some really good holistic docs, but it is hard to find the right one because every person responds to both the disease and the treatments differently (3 separate courses of IV antibiotics did not cure me). It will take some work and discipline on your part too, in giving up certain foods and finding the perfect balance of rest and activity for YOU. I wish you Wellness!!
what was the Electro Magnetic Therapy Device you bought. was it the Red low light laser [LLLT] or the Rife, which is supposed to kill bacteria. we are just finding out about theses machines.
My husband has chronic Lyme he is on Bicillon.
Rene
Dr Phil, I have Lyme.. undiagnosed for 5 years..I’m from Pa. the heart of Amish Co. I had to go to Md to get treated, due to the doctors In my state, saying I was cronic, and if they treated me they would get in trouble with the AMA. They have to follow their rules..(The one LLMD Dr. in Pa would of cost out of pocket , first visit around three thousand dollars) I saw a LLMD and I have the same “story” as the rest..I lost my job last April and do not have any insurance..this illness has cost me a lot of money, out of pocket…Thankyou for doing his segment..We do need all the help we can get to be heard.. Check out the Plum Island therory…I feel it’s true…Bless you!!!!!!Bonnie
Thank u Dr Phil!!!!!!!!!!!!from the bottom of our hearts!!!!!!!!!!!the suffering and needless lives lost to lyme disease is horrific!!!it has got to be adressed and u will be thank by god and all that suffer from this monster!!!many that are told by mainstream dr its ms!!not a tick bite and there health goes down the tubes along with thousands of dollors of ms drugs that do nothing but make our lyme spread all over and leave us disabled paralized,depressed, homeless,divorced, broke!!!!!!!!the secret has got to come out!!!no more lies!!!!
Thank you for taking the time to touch on this delicate subject. I have also been infected by the evil spirochetes(aka lyme disease) , and co-infections. I have been in treatment since August of 2011. My healing journey has just begun. It effects everyone differently it has crippled people, and stolen lives. I don’t believe that doctors are properly educated on how to deal with “late stage” or “chronic lyme disease”. It seems as though the animals have a better chance of surviving lyme disease. I have also heard there is a vaccination for animals, and what about humans? What about the children? We need to get the facts out there. People get refused treatment and treated as if they are crazy once you mention the word lyme in an ER setting. We need someone to be our voice! Thank you & Healing Hugs for the others on this journey!
wow dr phil adressing lyme ive battled lyme 4 20 years now chased docters 4 treatment sent to mexico 4 antibiotics, been so sicck i considerd suiside,this disiese sucks if i had cancer i would get a benifet put on whith lyme you are shuned and have to fight 2 get any treatment, thank god 4 duluth mn lyme support group and facilitater tom grier !!
Thank you for helping to spread the word about this terrible disease. Even with BlueCross insurance, treating this for over 5 years has cost me over $200,000 and I’m not yet well. Most of that money has gone towards antibiotics that insurance would not pay for, as well as supplements, and travelling out of state to a lyme literate physician. The “cheapest” part of my treatment has been my physician’s costs, his fees are relatively reasonable and he has the patience of a saint. I’m much improved but not all better yet, and not yet able to work full time or live a normal social life, both of which I long desperately to do. Thank you for publicizing what’s happening with lyme.
Hi, just want to say thanks for doing this segment. I suffered for years with doctors saying they don’t know what I have. So many hospital visits, meds, crazy testing even had my 1 kidney removed along with other things. I found out this year at 30 that I have Lyme. What a battle it’s been since! Such a fight . I really hope your show brings awareness and shows people chronic Lyme can’t be cured with just 4weeks of antibiotics. thsee guidelines need to be changed
Any time Lyme disease can be brought to the attention of the medical community and the public is of some help. I’m in my 12th year, have seen over 50 doctors and been treated 3 times with IV antibiotics, mis-diagnosed, sent to psychiatrists. If I weren’t an RN and agressively sought (and paid for) treatment I might be dead by now. I’ve lost my career, my job, and my income, and live with constant chronic pain and fatigue. I appreciate ANY practitioner (like my ‘alternative med’ provider) who takes the time to study up on this disease and works with others to help us find relief. The research is sound, but Lyme is still touted as a ‘psycho-somatic’ problem. It’ll take lots of patient and provider education as well as some heavy-duty lobbying to move forward.
Thank you Dr Phil. The IDSA’s influence spreads a long way. For reasons that are a mystery to us, the health service over here in the UK follows the IDSA Lyme Guidelines, which makes it almost impossible for us to get the right diagnosis and treatment for Lyme Disease. I was sick for decades with a deteriorating, relapsing illness before I discovered an ILADS trained physician who understood what was going on.
I live in MA in a little town called Athol, maybe you would know of it because it is withing feet to the Quabbin Resovor which is the main water supply into Boston, MA. My 21 year old daughter started getting sick at the age of 12, with multiple symptoms, we went from doctor to doctor for years, for everything from dizziness, depression, body tremors, seizures to full body pain, at the age of 16 I found a doctor in Boston, that diagnosed her with Lyme, Babs, Bartonella. She has been treated for the past 5 years with multiple antibiotics and has seen some improvement but goes backwards if we stop treatment, sometimes months on end she lays in her room unable to do anything because of the pain, She has tried to commit sucide 4 times and luckily I have been able to save her. But each time she wakes from an attempt she pleads with me to just let her go. If you can do anything to help this disease become public and to also let the public know that the testing for Lyme is inaccurrate. What we need is a new test that works and for someone to figure out how to stop it from multipling in one’s body. What about all the little children who are out there that can’t describe their symptoms.
Thank you for bringing awareness to this horrible epidemic. I wrote to you when I was first diagnosed and asked if you would consider doing a show on it. I was diagnosed 4 yrs ago but looking back I suspect I’ve had it since 1994. I was told that I had MS but I knew I didn’t. Fortunately I had access to a Lyme literate doctor in Boston that set me on the road to healing and I’ve found another closer to home that is treating me. This disease cannot be ignored and the IDSA needs to get it’s act together and stop catering to the insurance and pharmaceutical companies and those doctors that are on the Lyme panel and have stock in pharmaceutical companies need to bow out. As a side note my dog has Lyme disease too….and he gets better treatment. Why? No insurance companies to deal with. So sad!
Thank you so much Dr. Phil,
I am suffering with Lyme as well as my two children. I also have gone to many doctors, internists, mayo clinic, gastro doctors. Finally, a local M.D. in my area was able to give me a diagnoses. I have borrellia Hermsii. My thought process, heart, gastro intestinal tract (my gallbladder stopped working), vertigo, lightening bolt headaches and more were all affected. Insurance companies don’t want to help!! Anything you can do or say I am sure will help. Thank you in advance for anything you can do to put the word out. People think that lyme is only in the East Coast. It is right here in California and it is big!!!
Thank you Dr. Phil. This disease has effected 5 out of 6 of us in our home. I have been suffering with this for the last few years. I am blessed with a husband who is an eye doctor and helped diagnosis me. I struggle daily with my thought life and pain. The cognitive deficits are the worst. As is the medical professionals notes in your chart stating your obese and should seek psychiatric counseling when you clearly have signs of severe illness. For me it was cardiomyopathy. Thank you for alerting the public to this horrendous life altering illness. May God Bless the words spoken by all your guest and may they be used to the benefit of those suffering.
I also was diagnosed with Lyme Disease in 2000 after a serious mold exposure in a sick building. I suddenly became chemically sensitive to everything in my environment and started developing nerve pain in my feet and legs. The pain would get so bad that it would keep me awake at night. I then developed a head tremor that continues to this day, due to nerve damage caused by the neurotoxins from the Lyme. I am quite a bit better then I was thanks to a combination of alternative and allopathic medicine. I am not at 100% but am hopeful that some day, medicine will discover a cure to this terrible disease.
Susan, I was also exposed to toxic mold and have the exact same symptoms as you. The tremor happens when I try to go to sleep and I can only get thru it by taking Clonezapam and other sleep aids. I’m worried the nerve damage may be permanent since it has been over a yr. now. Please share with me any improvements you’ve had and what else you think can help. Thank you.
This horrible illness struck my little girl in 2009. We had new symptoms appear every couple of days. We are in Tennessee and travel out of state to see lyme literate doctors. It is very expensive and not covered so well under our insurance. She has isolated herself, because she suffers derealization. Although she is very smart, the disease wrecks havoc on her neurologically. I am so thankful for any doctor open minded enough to want to help with this disease, called the “Great Imitator”, as well as so many friends we have met, who not only support us, but understand and battle the disease as well. Thanks Dr. Phil, for speaking out for so many of us, who feel so alone, until this is made better known, researched, treated and hopefully someday cured.
I have chronic Lyme disease and I am so frustrated with the medical profession. Sadly, my story is not uncommon. I wasted one year of my life reaching out and pleading for help with our local (very large – state wide clinic) clinic and doctors who told me I did not have Lyme disease but instead suffered from chronic fatigue and fibromyalgia. After hours and hours of research I found a Lyme literate doctor in Wisconsin who was only 2 1/2 hours away. I truly believe this doctor saved my life. He is a true country doctor who takes his time and goes above and beyond for his patients. Earlier this year he had his medical license taken away and is fighting to get it back. I don’t understand why the big business of medicine and insurance companies refuse to acknowledge Lyme disease and the CORRECT treatment of it.
My Lyme disease is once again acting up and I am not able to find another Lyme literate doctor that accepts insurance. When calling around I was told it has become common for Lyme doctors to not accept insurance because it sets them up for trouble.
Please help open the eyes of our medical professionals. My life depends on it.
Hi, I live in Ct. I have had Lyme since 2001. I was never “cured”, one of the luckey ones who had late symptoms before diagnosis. I have flares usually in the fall and spring. Put your visits through your insurance AFTER you see lyme doc. You will be reimbursed some of out of pocket. I did it! Get help! God luck! Alison
I will not be able to watch on the 13th because it is a jewish holiday (no tv).
Can you send me a CD of the show?
I just want to say THANK YOU Dr Phil from the bottom of my heart , I have always loved you and your show
Doing a show on chronic lyme takes guts as you will be the first to bring late stage lyme to a national level .. I too am one that has suffered for years and am just a shell of the person I used to be .. the plum island conspiracy is the only reason I believe that chronic lyme does not get the recognition it should, I know this will not be a part of your show on the 13th but it cold be a whole different show all together .. you have no idea how many chronic lyme sufferers have been waiting for someone in your position to do a show like this …I just hope that the rep from IDSA dosnt come out on top or we will all be back to square one . .. Godspeed to you and your staff! I can not wait to watch the show on Friday ..perfectly named “Deadly Consequences” ..
Dear Dr. Phil,
My daughter has suffered for 4 years with a mysterious illness that causes severe stabbing abdominal pain, vomiting, nausea, joint pain, muscle weakness, seizures, brain fog, speech slurring. Because most of the pain is in the abdominal area, GI drs. did many tests and found nothing that would cause her problem and labeled her a drug-seeker and a malinger. She vomited so much she has malnutrition and is being treated with IV nutrition as well as the IV antibiotics. A Lyme literate doctor in Amherst, NH recognized all the symptoms and diagnosed her with Lyme and babeosis. Finally a diagnosis and treatment, right? Well, IV antibiotics are so extremely painful that if you don’t have a pain clinic that understands about the Herz reaction to antibiotics, you are DAMNED to the worse nerve suffering of your life. My daughter was dropped as a patient at a pain clinic because they didn’t like her feedback. She was not asking for more pain meds, she was telling them the fact that she is unable to function, shower, sleep, even get out of bed due to the extreme pain she is experiencing while enduring Lyme treatment. The pain clinic labeled her a drug-seeker even though they know she has a Lyme diagnosis and extreme pain. How’s that for modern medicine–dropping her from pain management when she needs it the most? I am just horrified. “TO DO NO HARM”–what does that mean anyway, to pain clinic nurses for the patients who desperately need pain relief?
Thank you Dr. Phil for shining the light on Lyme disease. This is not an easy disease to manage but I have found that not eating,sugar,,white flour and not drinking alcohol makes a tremendous difference in my pain and fatique level. Also, exercise,in my case,spin classes seem to help with muscle spasms.
hyperbaric therapy is this ever used
I have lyme and did HBOT for one months at 2 dives a day and not only did not get better, I got worse and the 100% oxygen ruined my eyesight permanently. I do not recommend HBOT to lyme patients. I was told that it was not successful because I had babesia at the time I did HBOT and that babesia thrives in 100% oxygen. I hope this helps you. I know other lyme patients that also had their eyesight ruined.
Dr. Phil – I am pleased to hear that you are airing a segment on Chronic Lyme Disease. In 2005, while packing in the Trinity Wilderness (northern CA) my husband discovered a tick embedded in his leg. Given our outdoor lifestyle, this wasn’t unusual, but since he had the “bull’s-eye” rash, he went to the ER as soon as we returned home. The Dr. there said, “ticks around here don’t have Lyme”. My husband insisted on treatment, and was given Doxycycline, an appropriate antibiotic, but only ten days, just enough to suppress the spirochete. My husband described the next eight months as “a battery slowly being drained of its power”. He continued to work until he just couldn’t get out of bed anymore. During that time, he had numerous tests and saw nearly every specialist in town. One said “You probably have Lyme, but I can’t risk my practice by being the one to diagnose and treat it.” We even went to the Mayo Clinic in Scottsdale, where he was given a week of solid testing to rule out other conditions that are often cited as misdiagnoses when a person has Lyme. Although they did not “believe” in Chronic Lyme, they did rule those other possibilities. By then, we had found a lab that knew how to test for Lyme and its horrible co-infections, and a Lyme Literate Doctor, who knew how to treat it, although every visit was a 600 mile trip. After about eight months on antibiotics, natural remedies, and diet (many to counteract the destructions antibiotics wreak on the digestive system), My husband went back to work (too early; his state disability had run out), and worked for another year on sheer will-power, until once again, he just couldn’t get out of bed. He was on antibiotics (including IV) for a total of three years. He has had just about every Lyme symptom on the “list”. He is now on Permanent Disability. Fortunately (?), his symptoms are bad enough that there are several secondary diagnoses which qualify him for SSI, since they do not recognize CL as a disabling condition. We are grateful that he can now enjoy a few hours of activity on most days. That is more than many people with this awful disease have. If the IDSA were not so politically motivated to disprove the existence of Chronic Lyme, and would seriously consider the vast amount of legitimate research that has been done on CL, my husband might have been treated appropriately at the beginning of this ordeal, and he would still be a productive worker and an active father and grandfather.
(apologies if this is posted twice – lost my internet connection and re-entered…)
My erythema migrans rash was written off as a ‘spider bite’ by a doctor who had received no training in recognizing or treating Lyme disease. His ignorance (and subsequently the ignorance of his colleagues) caused me to lose 14 years of my life to the debilitating effects of unrecognized, late stage Lyme. How many more people have to lose all quality of life due to the IDSA’s faulty Lyme treatment guidelines before this dreadful disease is recognized and the situation is rectified?
Thank you Dr. Phil for doing this show on Lyme Disease. I was misdiagnosed in 1993 by an Infectious Disease physician with Chronic Fatigue Syndrome. I continued to teach struggling with multiple health issues over the years. In August of 2008 because of muscle weakness, shortness of breath and severe fatigue my body collapsed and I suffered a broken nose. After multiple tests physicians at Johns Hopkins said there was nothing wrong with me. My symptoms continued and I attempted to go back to work but was not even able to hold a paper in my hand to grade.
It was after seeing a Lyme Literate M.D. that I got the correct diagnoses of Lyme along with two tick co-infections, Babesia and Bartonella through IgeneX and Fry labs. I never suspected Lyme because the ELISA test from my Primary Care Physician had just come back negative. I also never saw a tick or had a bull’s eye/rash.
My twenty seven year teaching career was lost because the IDSA is giving inaccurate information about Lyme and the co-infections to physicians. If this had been diagnosed and treated correctly in 1993, I have no doubt that I would still be in the classroom today. My story is one of thousands who have lost so much because of this disease, even their lives. Thank you for doing this show.
I was Lucky and found the dead blotted tick on my back , and went immediately on Amoxicillin .
After I finished the antibiotic . I was a mess a zombie . I couldn’t put a meal together after decades of cooking I could not time meat potatoes and vegetable to make a meal or find my car in a parking lot . The Infectious Disease Dr. said I had Post Lyme Syndrome . The Lyme was cured but my body was still fighting it . I was a mess I had no symptoms before because I started antibiotic Immediately , How could I have symptoms now ? Lucky me I was able to go to a Dr. in East Hampton Long Island and he sent blood test to Bowen Research in Palm Harbor Fl . Looking at my blood under a microscope they found Lyme ,Bartonella , Babesiosis , Ehrlichiosis and Rocky Mountain Spotted Fever . THANK YOU ! to that East Hampton DR.
A NEGATIVE LYME TEST IS MEANINGLESS . And most Drs. don’t know about co-infections .
I am a health care professional who acquired Lyme 6 years ago in Minoqua WI. My entire family experienced the same exposure/sequelae. I have been to an expert in Westchester N.Y. and to Columbia Tick Borne Center in NYC only to realize that the research is lacking and right now all we can do is treat somewhat palliatively.
I was steeped in Western Tradtional Medicine but Western medicine offers little in the way of a cure so I have reached out to other disciplines. Many days are physically very difficult and I fear for the health of my family. We are lucky to have someone who will treat us but we are spending 40k a year to try and maintain our health.
I pray the research/medical community will wake up and address this endemic.
I’m a Lyme advocate and educator. Chronic Lyme disease is a complex and controversial multi-symptomatic disease that can destroy lives. It is known to imitate other diseases such as Attention Deficit Disorder, Multiple Sclerosis, Chronic Fatigue Syndrome, Depression, Schizophrenia, and more. It is a hidden epidemic.
I was diagnosed with the Lyme stew (Lyme, co-infections, viruses, etc.) and was chronically sick for over 10 years. My healing path lead me to alternative and holistic treatments. I’ve been in remission – twice! I share my unorthodox story to wellness on my blog: http://healerdealerdiary.blogspot.com/
Thank you, Dr. Phil for airing this “hot” topic. Many doctors do not believe in chronic Lyme. Hopefully, your show will bring awareness, enlightenment and answers to those who are suffering. I look forward to watching your show!
That DR. had to fight to keep his Medical license . And if anything comes of your program Dr. Phil I hope it is that there are 2 standards of care when it comes to Lyme Disease and co-infectiones .And patients need to be told by there Drs.
what they are .The pros & cons of each .
And of course we are always hoping for better testing ,
Clearly, you have hit a very long over due nerve Dr. Phil. As the others, I have been diagnosed with chronic Lyme disease and have had a compromised life. I was beginning to feel hopeless and like I had a life not worth living because no one knew what was wrong with me. However, I finally found a Lyme Literate Dr who is now treating me and over the past year have begun treatment – and very slowly, the pain is getting better, the symptoms are improving and I have actual hope. I am also in a tooth and nail battle with the insurance company trying to get them to pay for my treatment, as the costs are exhorbitant – I put out right now, about $2,000 a month in medical expenses which I will very soon, no longer be able to do… and then what? I stop in the middle of treatment, and go back to being even worse than before? I would love for the spotlight to be shined on this grave injustice being practiced by the insurance companies who clearly are making decisions based on conflict of interest. In fact, I would love to instigate a Civil Law suit against the insurance company I use – Anthem Blue Cross, which I just might do if they deny my appeal. Dr. Phil, is there any way you can do another segment on this and focus on the controversy around insurance companies? Thank you for being part of the solution!
I hope that people will understand when the information comes from you, Dr. Phil! Thank You!
I am a health professional, and my daughter has been very ill for 10 years with significant disability from LYme disease, babesiosis, and bartonellosis. Until we found health care professionals willing to listen, test and treat her 2 1/2 years ago, she underwent a long list of doctors, all of whom discounted her symptoms as “conversion disorder” (other names: “psychosomatic,” “hysteria,” “Munschausen”), and instead opted to fit her symptoms into their diagnostic labeling preset system, placing a stop to any further scientific endeavour into it. Once labeled as such, no longer reliable, trustworthy, REAL! What incredible ignorant, arrogant, neglectful medical practice! What happened to medicine? This needs to stop, and we need to expect medical accountability for such malpractice and abuse. This is not medicine!, but covering up for academic, financial conflicts of interests, that allows denial of care to patients who are suffering, are sick, and are REAL. This cannot be allowed to continue!
Lyme disease and associated co-infections and complications is a chronic health condition that affects many people, including many young bright people now disabled and unable to live life fully and contribute to society as they would like to. This is not a make-belief illness. THese people are REAL, are suffering, and have overwhleming symptoms. Please open your hearts and minds, and listen to them. THey are HERE, NOW, asking to be heard, validated, and asking for medical help. What is so bad or wrong about this expectation? Don’t we all expect this of our medical system? This is not a system where doctors and medical establishments rule as kings, but a system where we all must be involved and listened to. We are all patients in one way or another, whether we are doctors, insurance workers, janitors, students, and regardless of our age, race, ethnicity, gender, or set of symptoms. Just because there is no medical agreement on an issue, that does not mean the patient does not exist! Please go back to the basics of medicine – applied science and art of healing…prevention and treatment of illness in HUMAN BEINGS
Dr. Phil,
Thank you for addressing this issue on your show. It’s an epidemic that the medical community refuses to acknowledge. My story is the same as everyone else except I was infected by a tick on Cape Cod, Massachusetts at the age of 3 in 1965 well before Lyme was even officially named Lyme in Connecticut. After 42 grueling years of incorrect diagnoses and suffering immensely, I finally discovered I had Lyme since I was three at the age of 45. I tried to complete 2 years of treatment and could not finish due to the expense and horrible quality of life it gave me. Someday I hope to have the strength and expenses to tackle that treatment monster again. I would rather have cancer any day than Lyme. It’s a day to day nightmare.
Laura
Some things I think most people with Lyme disease know:
*IDSA are “hired guns” for the insurance industry
*The insurance industry pays doctors to testify against people with Lyme disease with some “hired guns” making over $8,000 to $10,000 to say patients do not have Lyme
*These same doctors rake in money from the “other side” contradicting themselves and are given research money to study Lyme disease. They are paid money to discredit Lyme patients while at the same time they are awarded grants to research Lyme disease and other tick-borne illnesses. $$$$$$$$ each way they go!
*Corruption is rampant within our current medical system.
*Ticks not only carry Lyme disease but they also carry Babesiosis, Erlichia, Tularemia, Mycoplasma and a host of other serious infections.
I hail from New Brunswick Canada and have been suffering from chronic lyme since being bitten in a National Park in 1999. We have the same difficulties as our southern neighbors in obtaining any help for this nightmare. Thank you so much for bringing more attention to our plight.
I have been suffering for over 3 years and still not well. I went to a Lyme literate doctor out of state for as long as I had money to pay him but the money ran out. I am losing my home after having to take early retirement in 2010. I am on SS and barely get by. I spent thousands and thousands of dollars trying to eradicate this disease. The last time I called my LLD, I asked if he could prescribe more antibiotics since I could not afford to visit him. He said no, I would have to come in. He did tell me to take Oil of Oregano 2X per day but as of yet I have not had the funds to even buy this. That was a month ago. I take all kinds of supplements and vitamins and I take anti parasitic herbs, but the symptoms never go away. I am living in a home where there is an infestation of mites. I think there is moisture under my condo slab and there is a crack in the slab. I am tormented by these things and my doctor told me 2 years ago I needed to move. I will be moving soon but have no idea where I will go because I cannot afford a decent apartment. This has been a living hell on earth. I am better only because I refuse to let these demons take my life away from me and I will spend money for supplements and anti parasitic meds before I will pay my light bill.
Dr Phil,
Lyme disease has spread throughout the world and right now in Australia the media has been at the forefront in reporting and educating the public about it and raising awareness for us the sufferers. Our government and the Australian medical association of course refuse to acknowledge it and the official line is that it does not exist here, and whilst it may be possible their is no science to support it.
They have dismissed a three hundred page dossier from a leading Australian science confirming the Lyme bacteria is here and countless other studies that go against their official line. it just seems crazy.
The medical world and scientists not that long ago labelled a condition from patient complaining about about all weird neurological symptoms as ” fakers disease” MRI was invented and all those labelled as faking were then diagnosed with having White matter on the brain and today it is called MS.
The idsa is in my opinion complicitely negligent and lacking any real credibility,and their guidelines should be removed.
We Australian suffers appalled your show for having the courage to air a show on Lyme disease.
I have been misdiagnosed for 8 yrs to finally have another doctor to blow me off. I can’t afford to get the test done to prove it but I have had a dr confirm clinical diagnosis of 90%. Cause of NC being a state saying this does not exist I am tormented daily with migraines, sinus infections, rashs all over my body, mind fog, and compression is gone. And only 50 other more symptoms that I have. Cannot get help for this with me being only 1 out of millions who r suffering till we die of early death b/c of our health care system! This disease is growing stronger and stronger and needs to be brought and won in the governments eyes. It has robbed me of my life and it makes me so mad knowing the drs knows this is true and they turn there back on us. Also want to Thank You So Much for Broadcasting this for America to see. So many ppl don’t even realize this is what they have or either has given up.
Thank You Dr Phil for discussing this important topic. I think the hardest thing about having Lyme’s is not knowing day to day what symptoms you might have, or if you will be able to even get out of bed to function. I am also an RN, on disability for the last 4 months due to symptoms, spending thousands of dollars for essential care and treatment.
I have been disgusted by the comments made by many “mainstream” doctors I saw for the many symptoms I’ve had for years, and cried when I finally found my “savior” doctors that all immediately wanted testing for Lymes when I saw them. I don’t understand the disconnect between doctors and I’m disgusted at the way patients are treated and the suffering that continues everyday.
We need serious attention paid to this disease, we need the CDC to wake up and change their guidelines, we need doctors to LISTEN to their patients and not dismiss them so quickly, we need more research done NOW as this is an epidemic thats killing people everyday.
Amen Lorraine. Drs need to listen and be educated about how to properly diagnose and treat lyme disease.
I have been fighting lyme for 29 years,I have been on IV Rocephin for 3 months,still no cure.I have taken years of oral antibiotics still no cure.I gave myself 14 months deep intramuscular bicillan shots two a week, still no cure.
My joints are all effected,I have been suicidal,Paranoid, had heart fibrolated out of control,eysight is terrible possibly was leagally blind for awhile,tourettes was made much worse by lyme.(CRS disease cant remember shit),sometimes I do not know were I am and get lost for awhile, these things are just the tip of the iceburg.Very nural disease it is. I belive it has caused my interstitial cystitis allso.
My immune natural killer cell count is only 8 it should be like 135 to 236.I miss family get to gethers on holidays due to immune system problems,I can’t risk a cold of flu.
I can’t risk a relationship ,Lyme is sexually transmitted.
The out go of cash to pay for doctor bill copays has led me to keep charging the copays to my home equity line and I will now never own my home.
I could just keep on telling the terrible life I have but there isn’t enough time or space here!!!
The large spaces between these sentences are for nural impaired lyme people,so they can read it.
MICHAEL
Please acknowledge our Ct. Dr..Dr. Jones cared for and cured our Lyme Children .
And the parents that sacrificed for their children . I’ve met adults with Lyme who never know they where sick . Can you imagine growing up sick and not knowing
Yes, God bless Dr Jones for all he has done for children with lyme disease and for all he went through with having his license to practice removed! SHAME ON IDSA! See Under Our Skin Documentary and for more information on DR Jones go to:
http://drjoneskids.com/
http://lymiebuzz.blogspot.com/
Dr. Phil,
If you are convinced that Lyme is a real disease, after airing the show, you may want to re-consider discussing Morgellons again. You never brought the person who had this, back on your show as you said you were going to. People with Morgellons also have Lyme. Morgellons is referred to by some as a co-infection of Lyme. Both are awful to to live with and are being silenced; as many of us suffer. Morgellons is very, very real and it is ruining many people’s lives. We have the right to know and be treated so we can live the best quality of life possible. Thank you, Janet
Washington State, Snohomish County on a mountain called Pillchuck just north of Everett. This is where I was bitten in 1985 while working at a place called Camp Silverton. Everything you read is true as I vouch for how horrible this disease is. Recenty my beautiful wife, a wonderful loving person left me to (die?) as I lay bedridden having lost 87 pounds, sickest 6 months of my life. She yelled profanities saying I ruined her life. She was right and I am sorry she ever pulled the infected tick from my arm. Lyme is a horrble disease that has been known about since WW2. It has been well documented but sketchy in presentation until the 1970’s.
Answered prayer! Go get-um Brooke and Dr Phil too please! My prayers are with you as a fellow chronic lyme victim and sufferer. The IDSA must stop the madness now. Its a dyer situation with men woman and children not being treated because they don’t meet IDSA’s ultra- conservative and ridiculous guidelines for Dr’s to use a a guide for lyme patients. People are sick and dying because of these guidelines!
My father and son also have lyme and all of us would have benefited with quick treatment but my Dr would not test me even when I begged since the day I was bitten and brought the tick into the Dr who confidently declared it was a dog tick not a deer tick. It was a nymph deer tick Doc and you only tested me because I had to resort to begging. Sadly, it was too late and the many bacterias and parasites are now killing me.
My fathers Dr told him he didn’t have lyme even after he showed him the results of Igenex Labs tests which showed lyme and co-infections that met the CDC criteria for Igenex labs. He told him he did not have lyme disease and left the office in a huff slamming the door behind my dad.
For more on my dads story go to http://barefootbetty.blogspot.com/
If you have lyme and need support or helping finding Drs please ck out lymeblog.com
Sorry, the blog address above is incorrect. The correct address is http://lymiebuzz.blogspot.com/
If you have lyme and need support or help you can contact me at lymeblog.com. Register than send me a private message or you can instead journal your own experience on a website that is full of lyme patients who understand what your going through. Sometimes it just helps to write out your lyme experience.
You can send me a Private message and I will get back to you within 24 hours.
LYMEBLOG.COM
LYMIELIZZIE
I have had chronic Lyme Disease and Rocky Mt. Spotted Fever for 17 years, this is a heart wrenching disease to live with. I am happy to see you Dr. Phil doing a segment for all of us Lyme disease victims and our caregivers by raising awareness of this insidious disease. I just hope that the representative of IDSA doesn’t try and make us all look like fools because in all actuality they are the ones that are fools! This disease is so discriminated against, prejudiced and dangerous to live with, many victims have lost their lives to this disease, many are lying in beds with IV’s hanging on poles for survival, many are crippled and in wheelchairs. I wrote a book called, Ticked Off about my own personal journey with Lyme disease, my story illustrates the poor knowledge of the treatment of Lyme disease and other tick-borne pathogens. The medical community needs to be educated about these diseases Lyme disease patients need to be protected from insurance carriers and the state medical boards who do not understand the seriousness of these diseases. But we need to “protect our Lyme- literate physicians” who do understand how serious and how complex these diseases are. It can take months, and even years of treatment in order to get the disease under control, if at all! I fell to this disease in 1995, 13 doctors, 3 hospitals and a clinic in Cleveland, Ohio, $50,000.00 in four years trying to unravel the mysterious disease I had. I tried to hold a job down while I was dealing with Lyme disease and I am amazed that I am even still alive. I have had so many unnecessary drugs introduced into my system that I should never have had, unnecessary tests that should never had happened, as my health was slowly deteriorating right in front of my husband and children. Not only that the ignorant remarks that doctors said to me in the beginning of this disease was uncalled for, telling my husband and children that I was faking it, how dare they say this? If it wasn’t for my sister who lives in PA, and my husband being so vigilant about finding out what was wrong with me, I would have died back then. I feel it comes down to the money, it’s not fair that certain diseases can attract more attention and we can’t get Lyme disease the recognition it deserves. This disease affects your cognitive, neurological, physically impairing, psychologically and emotionally, and when you go undiagnosed for a long time like myself as well as many others this disease buries itself deeply in your tissues and requires a long treatment with antibiotics. Then the IDSA has the audacity to say antibiotics are dangerous to use, well excuse me, but if it wasn’t for those antibiotics, I would have died. I know this for a fact, because my LLMD saved my life back then. Thank you Dr. Phil and may God Bless you as He continues to bless me as well….
I got Lyme after getting 12 bug bites on my chest while lying on a wooden bench. I did not think they were ticks, since there were so many bites that looked like flea bites. I later learned that there could be wood ticks in the bench. Also, ticks can be no bigger than a poppy seed. Not all ticks come from deer and they are carried by many vectors, mice included. M.D’s are not informed that ticks are in all areas now. Many doctors I’ve talked to say it’s only on the East coast.
*Since I’m a holistic health doctor, I diagnosed myself after a few months. The traditional tests were negative. I did not have any symptoms except rapid pounding heartbeat in the morning. My cardiologist said nothing was wrong with my heart….,not much help.
*After seeing a Lyme literate doctor, he was able to diagnose me with specialized tests. I am concerned that so many people are not getting diagnosed properly and traditional rheumatologists and infectious disease doctors have protocols that don’t diagnose properly and don’t know how to treat properly
*It’s been year since getting the Lyme, and it’s much better but, it’s a long battle to eradicate the bacteria. They are hard to get out of the tissues, and they cause damage to muscles, joints, brain tissue…any tissue. Regaining muscle mass and strength and healing joints is not so easy. Some people have much worse symptoms from swelling in the veins and nerves, to heart and brain damage. Everyone;s symptoms are different.
*Politically, there is a problem with the insurance and disability companies. They don’t have good referrals to doctors who can do the proper work-ups on patients. Most of the time they say “it’s in your head” or “I can’t find anything wrong”. This is a big problem.
LYME and ASSOC. DISEASES – ARE ‘SEXUALLY and TRANSPLACENTALLY’ TRANSMITTED – CAUSING AUTISM and OTHER SERIOUS NEUROLOGICAL, CARDIAC and NUERO-MUSCULOSKELETAL CELL and TISSUE DAMAGE, WITHOUT PROMPT and/or PROPER TREATMENT, WITH LIFE-LONG HEALTH CONSEQUENCES, EVEN DEATH – SPEADING LIKE WILDFIRE TO OUR INNOCENT CHILDREN, TEENAGERS, FAMILIES or SOMEONE YOU KNOW!!!
Hi.
My husband has had Lyme Disease for over 15 years now.He has been disabled from this horrible disease and it has taken away his life,all because the doctors did not bother to check for Lyme soon enough.He was a Ranger at the Boy Scout camp in Crosslake and was hospitalized with severe fever and flue like symptoms for three days but the doctors said it was probably food poisoning.
After that he seen doctor after doctor and specialist for all the pain he was having.They diagnosed him with arthritis and fibromialga and even ms.
They finally found Lyme Disease when he took the western blot test.By then he had had it for over 10 years and was already disabled and had to quite the job he dreamed of getting since he was 8 years old.
It is very sad and frustrating when you go to the doctors and they tell you they can not talk to you about Chronic Lyme Disease and make you feel like you are faking to get more pain medication.
It is very frustrating for the loved ones who sit and watch their husband,wife or child suffer sever pain and cannot help take it away.
I am really hoping this show is not another one to try and prove chronic Lyme Disease does not exist.
I would just like to see someone stand up for all the people who are suffering and all the people who will suffer greatly if this disease it not looked at and talked about.Thank you.
I was misdiagnosed for about 1 1/2 years and am now in treatment for 2+ years. I am just starting to comprehend that this is not going away and I need to become more proactive in my recovery. But I am overwhelmed and lack support from my family who believe my dr. doesn’t know what she’s doing if I’m still on antibiotics and not better. I feel lost. I’m thrilled that Dr. Phil is going to talk about the subject but it is going to be just one part of a segment. We need more Dr. Phil! The medical field needs more information and support so they can help us properly and we can stop having to fight the Insurance companies for our prescribed treatments.
This year will mark 22 years that I have been dealing with complications from Chronic Lyme Disease and 2 other tick borne infections I received when living in New Jersey which is where I lived my entire life until moving to the South in 2002.. Since living here there is not one physician who treats Chronic Lyme Disease, much less understands it or wants to understand it.. We are the forgotten ones left to suffer and die due to ignorance, politics and money..
PS- “Magical Mineral Solution” known as MMS, also known as “Magical Mineral Supplement,” and more recently “Water Purification Drops” averages about $24.95-30.00 for a YEAR SUPPLY, and it is my whole-hearted belief, from my own PERSONAL experience, that it will cure your lyme. Please google it, and please IGNORE the FDA “warnings,” as the FDA is terrified of the news of this drug getting out because they (and the medical industry) will lose BILLIONS of dollars.
Please, do your research folks! I have been taking this for a solid year, and it has nearly RID my lyme! I will be going in for a final test in 2 weeks.
Google: Jim Humble, MMS, Magical Mineral Solution, Magical Mineral Supplement, IGENIX, Dr. Joseph Burrascano.
And youtube!
Blessings!
Dr. Phil:
My story is like so many posted before me. I was 30 years undiagnosed of which 12 I was misdiagnosed. Now I will never get rid of Lyme and coinfections. Wish I had known I had Lyme before having children. Found out I had Lyme after my youngest saw 19 doctors and was diagnosed with fibromyalgia at age 14 from a leading clinic. His conditions grew as he entered puberty until he crashed after a virus. Through mothers online, I was encouraged to get him properly tested for Lyme disease. This changed our lives forever. I was then tested and diagnosed along with my oldest son. We thought he was healthy despite swollen glands for 9 years.
Dr. Phil, I am an educated person. How did this happen? How did my failing health get written off as lupus by a renowned university hospital? How did a famous national clinic think that diagnosing a 14 year old boy with fibromyalgia was the right thing to do with out running any tests?
I was so ignorant despite growing up in an endemic area of Wisconsin. Why did my state not tell me about the dangers of living along the Mississippi? Why didn’t 19 doctors know that my son had Lyme when he couldn’t think, couldn’t stand, couldn’t regulate his heart rate or BP and when his personality and behavior changed drastically? Why didn’t they at least test properly for it?
He was in pain 24/7 for almost 2 years. It took 3 months of generic antibiotics to ease the pain and later 10 months of IV antibiotics to get him back in school.
Our lives are forever changed. I think how different it would have been if my Wisconsin doctor knew that I didn’t have to have the nice neat bullseye rash to signal Lyme disease.
I worry about my family, but I also worry about all the people who are sick with Lyme disease and don’t know it and I worry about all of those not yet bitten.
Please help make a difference in the US by educating everyone of the truth about Lyme disease!
Dr. Phil:
Thanks so much for taking the time to address this awful disease in a light that has need to be done for YEARS. I am 52 and have had on-and-off undtermined illness since at lest age 17. Back then, tons of test were run for my dizziness and neurological symptoms but nothng found so I was pegged as having stress-iduced anxiety and depression. I guess I am one of the lucky ones as my disease goes into remission for quite a long time (4-5 Years) before flaring again as Lyme toxins overload my system – the flares last about a year – wash, rinse, repeat. Docs always wanted to treat me with anti-depessants (never worked) and anti-anxiety meds (do work somewhat). Finally, I was test just 10 months ago and had so much Lyme in me that it apparent that I had long-term disseminated Lyme. Now on antibiotics and other herbs and such, I am slowly recovering but this is a life of HELL when the disease is active and nearly all my symptoms are neuro in nature and mimic psychiatric disorders and I trusted doctors for many, many years that I was a psych patient when really it has been Lyme. When my disease flares, I feel like I am either dying or going nuts – truly. But now, I am cofident that I am finally getting the treatment I need i OUTSIDE of the mainstream medical community giverned by the CDC and IDSA. The IDSA and CDC is somehow stuck on old diagnosis criteria – dunno if that’s due to ignorance or collusion but I don’t care – this MUST change. Thanks you for helping the momentum to end this injustice.
I have been dealing with lyme disease for 3 years. Had the bullseye bite, found the tick in the bathtub and went into full-fledged lyme within a week. Because of our location in NM, I did not take any antibiotics for lyme because I am allergic to antibiotics, as a rule, and had thought that it was unnecessary because lyme has not been in NM. It has been quite a learning curve. I am improving dramatically with the help of the coil machine from Alex Levy, Ph.d. (electrical engineer with lyme disease) who did this originally for himself in his own struggle with the disease. He has a website: Coil Machine.com. and is a joy to work with. The disease is so hideous that I feel most health practioners are incapable of understanding what horrors we deal with. I think most are simply out for their own financial gain and a convenient “specialty.” Anyway, I am doing well now, because of this coil unit, a couple of electronic units called the F-Scan 2, and a diet of natural whole foods that are blood type compatible. The book, “Eat for your type” should be taken into consideration. I also take anti-parasitic herbs: Total Para/Nutri-west & Aloe 22/ Health Concerns, which help tremendously and homeopathic antibiotics from Germany that my husband can get for me because he is a chiropractor. Any health practioner should know about this wonderful company, Sanum USA, 1465 Slater Road, Ferndale, WA 98248. I have found these homeopathic antibiotic and anti-parasitic remedies to be helpful and take them daily: Citro, Spermus and Oku. Because of the nature of the spirochete and because of the horror of this illness, I will probably always continue to treat myself for this illness–even when I am long past the symptoms. If you let one little spirochete go unchecked–you have it all back again. The Sanum remedies can be obtained from any health practitioner. I have recently found another remedy that is a garlic concentrate called Allimed, Phone: 800-827-7656. II also am using a Q2 Energy Spa detox bath–start with foot bath until you adjust to full body baths. Amazing detox. This has been around for years for general detox and is amazing. It seems to pull toxins right out of the body. It takes all of these things, including a very low glycemic diet to recover. Evidently, sugar makes the illness worse. Also– remember Mind, Body, Spirit. Love yourself and others. Forgive everybody–even if they don’t deserve it! Just being funny–it’s up to a higher power to determine that one. Think only about things that make you happy. Reset your thinking patterns about life and all its possibilities. Imagine doing the things you love–and live there in your mind. Important for healing and makes life a lot happier while you get well. The positive imagery will help throw out the negative thoughts, which would destroy anyone. This illness is a life and death struggle and I have found that my thoughts have affected me in a very powerful way! I wish everyone the very best and sincere prayers for your getting well!
same story. chronic lyme disease (includes co-infections) is really not a rare thing, it’s all over the place. wish some of our tax dollars spent on the research in “lyme disease” could be used to find a cure for chronic Lyme disease. After 40+ years of funding, no closer to helping sick people get over this, maybe some different researchers and ideas need to be looked at and funded…?
I’m glad The Doctor is having something on Lymes . I’ve been dealing with Chronic Lymes, Post Lymes Syndrome, what ever name Doctor’s want to call it. I call it Hell. I’s when the Infection has been eradicated but a person still suffers from the Disease’s aftermath of distruction to the muscles, joints, Immune system, brain function to name a few.
I hope all the facts on the show are accurate as Lymes can be misinterpreted , especially in the late stages.
Dear Dr. Phil,
Thank you for giving Tick-Borne Illness more media time. I do hope the IDSA spokesman doesn’t snow you—they are good at that. Instead of scientists being able to devote all their money and time on finding better tests and, possibly, a cure for these chronic infections, they have been fighting over the past ~ 20 years over whether the current tests are adequate, if TBIs can be cured in 2 weeks, and if there is any such thing as “chronic” Lyme. You have been given enough evidence that the IDSA’s Guidelines are rather misguided in the comments above, and my personal story won’t add anything. I still wonder why the fact that an Attorney General of CT (Richard Blumenthal in the past) brought an anti-trust suit against the physician group representing Infectious Disease specialists doesn’t cause more people to scratch their heads. Who ever heard of such a thing? Of course it was with good reason that the AG did this but the settlement agreement was not followed by the IDSA and they got away with it. Again.
I am quoting someone I am quite proud of; he called what is going on in our country an unintended “Tuskegee” experiment in an editorial published in a peer-reviewed journal back in 1994. Borrelia burgdorferi does what Treponema pallidum does. Anything and everything to the body. A recent study was published in PLoS One @ http://www.plosone.org titled “Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection.” It proves that Lyme borreliosis can persist in the face of aggressive antibiotic treatment.
I won’t even mention my personal losses, but I know that I have cost society a great deal more in being permanently and totally disabled from Borrelia burgdorferi, Babesia microti, Babesia duncani, and whatever else might be found with new testing. I have been treated very aggressively for many years yet still have positive DNA/RNA tests every now and then. I feel much better than I used to, but I am still ill and have permanent cognitive loss.
Thanks again,
Eileen McInerney, MD
As a 6-yr Lyme/Babesia sufferer, I take personally the IDSA’s* attempt to disinform the public regarding long-term Lyme disease. Co-infections make it tough to treat Lyme successfully. After years of trial-and-error, with various combinations of meds, my doctor has arrived at a regimen that is giving my life back. I can now function at nearly normal levels. What a godsend! What is that worth in dollars?! To some insurers, it is NOT worth much. Consider this: If an Infectious Disease Specialist mis-diagnoses Lyme, and then merely treats symptoms, he will have a patient for life. Unconscionable!
*Infectious Diseases Society of America (Primarily Rheumatology Doctors)
Dr. Phil,
God bless you including Lyme Disease in your upcoming show!
I have been disabled with Lyme for 20years, 19 of those years I was misdiagnosed with Fibromyalgia, Lupus and lastly Doctors were guessing MS! Finally 1 dr. did the correct test for Lyme Disease.
Now I cant find a Dr. in my area who will treat it! They say Lyme doesnt exist in the South! I sure cant afford to fly out of state and not have insurance to treat! Locally, I have an HMO and Medicare, who say Lyme does not exist here!
I lost my career, my relationships, and my life to this disease.
Thank you again and I pray God blesses you!
Julie
Dr Phil,
Thank you for doing a segment including Lyme disease. I was a ‘health educator’ for many years with the American Red Cross including helping educate probation officers and others in the 1980’s when a ‘mysterious’ illness was killing young homosexuals and drug users in San Francisco which we now call “Aids”. I was told ‘there is no Lyme diease’ in California and that is what I told to hundreds of people. I was a ‘classic’ case of Lyme disease. I was bit on a backpacking trip near where I live, had a ‘rash’ and immediate flu like symptoms that went into encephalitis in a week. I left the hospital looking like I had a stroke. Months of pain, physical therapy and symptoms that would not abate. Treated for MS, depression, and a host of other diagnosis only to be told it was ‘conversion disorder’. 5 years into it, a knowledgeable PA read my chart, found a positive ELISHA, then gave me a Western Blot which was positive for and was diagnosised with Lyme disease. Could I get treatment for Lyme disease after 5 years? The insurance companies and doctors told me there was no such thing as chronic Lyme disease, and gave me a short round of antibiotics saying, anything after that must be ‘Post Lyme Syndrome”. I was fortunate to have a strong support system who helped me advocate for more treatment including a PICC line for 18 months. More than 4 years of treatment from a disease that almost killed me twice and I am now out of a wheelchair and living a quality life. I am fortunate and I know it. I still have the disease but my strong immune system helps me continue to fight it. I still have ‘problems’ but I keep going. We have a problem when I meet all the requirements for Lyme disease yet I still couldn’t get treatment. There needs to be a change. I will fight for that change for those who cannot fight for themselves anymore. Thank you again Dr. Phil for your willingness to expose a disease that is edemic in many area’s of the US yet not recognized by the medical community as a problem.
For the last 7 yrs since the age of 15 my daughter has been so sick. Diagnosis since then has been Fibromyalgia,Chronic Fatigue Syndrome,RSD,Arthritis,Heart Arrythmia,Migraines,Thyroid problems,sensitivity to light etc etc. Just because a patient tests negative for ELISA doesn’t mean you don’t have Lyme disease!
3yrs ago Western Blot positive, she was started on Doxycycline. Last Sept 2011 Lyme Disease migrated to her brain, now started on Rocephin. Will she ever be normal and pain free………I don’t know? I am heart sick because this could have been prevented with physicians being more knowlegeable about this growing disease.Physicians were told our dog died from tic paralysis the same year she got sick! Where do I go from here?
All the men in my family have had Lyme disease since we live in Marinette County, the largest forested county in Wisconsin, full of deer and ticks and they all hunt and fish. My father died from it in 1992 having very dark Italian skin and missing the red spot soon enough that is the red flag for the disease. He was tested over 2 years for everything under the sun but they never tested him for Lyme Disease until I insisted he go in and I’d pay for the test. He came back and had it for nearly 3 years, misdiagnosed. He suffered all the symptoms and when he finally got respiratory heart failure, he gave up and told the paramedics to just let it be his page to turn. Meaning he wanted to die and not be resuscitated. He also believed it was a deer fly that bit his ankles in tall grass and not a wood tick because he remembers getting the flu shortly after that episode golfing. I asked him whatever was he doing in the tall grass golfing ? He didn’t see the humor in it and I knew his days were numbered.
My husband never carried our second son because he was afraid of dropping and hurting him. This is a young man who was a journeyman electrician and used to carry 50+ pounds tools and equipment daily. For three years we had no idea what was happening. No doctor could figure it out. It started as low back pain, but nothing showed up on MRIs, blood tests, bone scans or the other endless barrage of tests. He had three surgeries which did not help, and one made things worse. Early on he asked a doctor if it could be Lyme Disease, but the doctor told him if he didn’t have a rash it couldn’t be Lyme disease.
We live in Los Angeles County, my husband has never been to the East Coast, and Lyme disease along with co-infections, has devastated our lives. In September 2006 my husband was a healthy journeyman electrician, well liked and respected in his company for his work ethic. By January 2007 he had lost his job for missing too much work. It started out as low back pain, and just kept spreading down his left leg. If only we had known! Shortly after that our now almost five year old son was born. Thank God I was pregnant before we think my husband was bit. The pain continued to progress, he couldn’t walk without crutches, and is started to spread into his arms as well. He used to be a whiz at the checkbook, electrical formulas, etc. and now he can’t keep his train of thought beyond a few seconds. It is like living with an Alzheimers patient, but he is still a young man.
Over the past six years things have deteriorated to the point he is now homebound and uses a wheelchair. It has to be a special huge reclining wheelchair because he can’t sit at a 90 degree angle due to pain. He can’t walk or even stand for more than a few minutes. On a really good day the pain level is only a 7. Most days it is 8-10 and no drugs have been able to control it. He thinks of suicide daily. Were it not for the fact we have two young children and he can’t bear to hurt them anymore than this disease already has, I would be a widow. But every day he lies in bed and struggles with the fact that he feels like an emotional and financial burden to his family. His pain is so constant and unpredictable that he rarely leaves the house. He begs me to find someone else to love so there will be someone to take care of his children and he can die knowing we are taken care of.
He tested positive for four of the necessary five bands of blood to be counted as CDC positive for Lyme. But as he fell short, insurance will not cover anything labeled as “Lyme disease”. We have spent tens of thousands of dollars out of pocket, and we have “good” insurance. My husband is enduring, not living, and he has given up hope. I can’t blame him. He has been dismissed or simply abandoned by so many doctors he has no reason to hope. And the impact goes beyond just him. Every day my kids see Daddy suffering. They are now old enough to understand their Daddy isn’t like other Daddys, and it kills my husband. They are closer to me than him simply because I am the consistent factor in their life. With the unpredictable pain his interaction with them is limited. It cuts his heart to hear them say “I want MOMMY” when they are upset. The migraine headaches that come without warning only make things worse. You can’t expect two little boys to be quiet, yet we have to try. I am essentially a single parent, holding down a full time job, and primary caregiver. And I never know what I am going to come home to in any given day.
I don’t tell our story to complain. I tell our story so others will recognize Lyme and know they are not crazy. I tell our story in hope that others will avoid what we have been through. I tell our story so those who suffer will know they are not alone. And most importantly I tell our story so this epidemic will not just be a disease, but a story of real people. This disease is the HIV/AIDS of our generation. It will infect, disable and kill more people in the USA than HIV does. In my lifetime, I fully expect Lyme to be like cancer. There won’t be anyone who can honestly say they don’t know someone who has dealt with it.
Holly,
I know you and your husband..and he is an awesome man. To hear how things are now – since I moved out of state – brought tears to my eyes.
It is specifically because of meeting him at a Lyme support group that I met our Dr., who, I think, prevented me from going down a destructive path – which so many sufferers do while misdiagnosed. It is because of him and the others who shared their stories that I did not accept the non or misdiagnosis and finally realized what my symptoms might be caused by, and got an accurate Lyme test and knew to find a qualified Dr. I was able to get mostly in front of this devastation. There is hope, bit the light is too dim for too many. And for those who have permanent pain/damage/ or lost their lives…this is all so wrong!
I am so grateful, and heartbroken…
Much love and many prayers…..
M
Holly D….my life sounds exactly like yours…my husband is in the same boat, and has been for almost 8 years now. I too have Lyme’s and by the grace of God haven’t succomned to it as horribly as my husband, but I too have many, many symptoms. Something must be done…i can’t believe that doctors can sleep at night in complete denial of this heinous disease! My prayers are with you…hang in there…
Doctors who are doctors only for the money, and this has gotten us a bunch of conceited individuals who are not willing to admit that they don’t have a clue what is ailing us. I have had LYME for over 12 years known, and many more from symptoms which manifested themselves since 1960s. Is it LYME or some other infection or autoimmune problem left over from treating LYME, to the patient it really doesn’t matter, but to the doctor they should be scratching their heads and realizing that they need to spend more time learning about medicine and less about a big house and fancy cars, if they expect to be paid the big bucks. Most doctors I have seen could be replaced with machines and the run of the mill nurse. Of course there is a lot more to learn about medicine now a days. We need to revamp how we look at health care.
Some of us ‘run-of-the-mill’ nurses out here might agree with you; the point is, ANY health care practitioner has an Obligation to Follow Through on puzzling symptom clusters. It is appalling that some docs do not recognise the blatant sign of the ‘bull’s-eye’ rash (that unfortunately doesn’t show up on everyone) and that others deny that Lyme can show up as anything other than classic arthritis. Keep talking, keep appreciating those ‘run-of-the-mill’ nurses that pay attention and point things out to The Doctor (and pat them on the back, they need it, especially the ones that are working full time despite having Lyme themselves…)!
I also suffer from Lyme Disease and two co-infections. I spent 4 years going to Doctors seeking answers to my declining health. I was told I had Lupus, Thryoid issues, Connective Tissue Disorder, Auto Immune and maybe I was just “thinking” all of this was wrong with me.
Tested negative for everything you can imagine. I was offered anti-depressants to help me with what I “thought” were my symptoms.
My inflammation finally became so bad, you did not have to be a Dr. to see it.
My Dr.’s tested me for Lyme, but were told the tests were negative. I finally paid for my testing. According to the CDC, you have to be positive in 5 bands for Lyme. I was 100% positive in 4 bands, the last band measured 50% of the required amount of antibodies. so, basically am I am 4.5% out of 5.0 positve for Lyme.
After 4 years, I finally found someone to help me. I have been on mega antibiodics for 9 months now and have more good days than bad days.
There are way to many people suffering from this disease to ignore us. It is not in our imagination, it hurts, costs us our jobs, our homes, our savings, and our lives. This is not going away, Please help all of us.
Dear Dr. Phil –
Thank you for covering such a critical topic. Lyme Disease has to be one of the most misunderstood and misdiagnosed illnesses in this day. I have suffered from Lyme for 6 years. After 18 months of going to every kind of doctor possible and even a trip to Mayo Clinic where I saw a neurologist who suggested I was crazy, I was finally dx with chronic Lyme Disease by the most wonderful Infectious Disease Doctor. It was a triumph after seeing over 27 doctors for an answer to my debilitating symptoms. I was doing great for 3 yrs post abx, and now it has returned. I have started back on Minocin and am hoping to be back to normal in a month. People suffering from Lyme Disease will do just about anything to find an answer, the bacteria cause so many strange and alarming symptoms your mind has a difficult time grasping it. Unless you have had Lyme, you don’t know the terror of your heart racing, your horrible reaction to eating most foods, the pain in your joints, the brain fog, confusion, and loss of cognitive ability. Please make sure people know that ANTIBIOTICS are the only cure, you have to get through the additional pain the antibiotics cause while they are killing the spirochetes.
Natural remedies will NOT cure Lyme, only ABX. My hope it that there will be more research on this incredibly horrifying disease and all of those misdiagnosed with RA, MS, LUPUS, etc, will be able to get treatment. There are not many good blood tests for Lyme, my Infectious Disease Doctor, who I believe saved my life, used CD-57 and Peptide C-6. The Western Blot was negative every time I had it. Thank You, Again for covering this topic, Dr. Phil!
Jenny Brown
Troy, MI
Thank You Dr. Phil!
According to Dr. B (NY),I probably contracted Lyme via a blood transfusion in the 1970’s-and the Red Cross still does NOT screen for LD!
I was not diagnosed until 2003 (after finding a tick), My doc in KY had diagnosed me with a host of diseases-one being schisophrenia (sp). My LD has spread throughout my body, including my brain. I have had trouble recgonizing my own sons. I have a humming in my head that nearly makes me insane! It never eases up or goes away. I’ve been to many docs here (KY) and I’m told “Lyme don’t exist here” (much less be chronic). Dr. B had me on IV Rocephin & IV Magnesium for
nearly a year when I thought “Is THIS what health feels like!!” I was feeling so much better-then my doc here refused to continue the IV meds.
I have worsened-greatly.
Few people listen and fewer understand. When the LD takes my last breath-it will truly be a death by insigfinance.
God’s Blessings,
Cynthia
Dr. Phil I have watched you for years.
My entire family has been afflicted with LYME disease for over 20 years. We went to many doctors (10 to 20) always told it was rheumatoid arthritis, nothing or they did not know. I even was hospitalized and told I had Krones. A nephew has been severely harmed by this disease and left with no answer even going to Childrens and DuPont Hospitals until we all found Dr. Bach who treated us all for Lyme ,with the required anti biotics. A grand daughter stopped growing and lost her hair. We all have many problems. Naturally the insurance would not pay so we all antied up thousands of dollars just to get treated. Today we suffer daily with many of the symptons , however not as severely. It has been in our brains, hearts, kidneys, joints…you name it we have it plus several of the other tick borne diseases. Thank you for bringing this to the public notice. We may now get some research done. I am 78 years old and have been a REALTOR walking and showing woods, fields and even houses for 40 years. I also was raised on a farm and love the outdoors. My daughter Debi Smith has been an advocate of this for years. It always got lost in the government policies.. Thank you mss
Thank God for DR. B from East Hampton Long Island N.Y.
I had Lyme ,Bartonella ,Babesiosis,Ehrlichiosis & Rockey Mountain Spotted Fever Those results where from a blood test that put my blood under a microscope . I did have the color pictures of my blood with the diseases .
Without this test I would have never guessed I was that sick . I don’t think the test is still available the Dr. developing the test I believe has passed away .Please ! We need better testing . And Lymies only use their Dr.’s initial to protect the Dr. from losing his medical license .
Thank you so much for being the much needed mouthpiece for this deadly disease, Dr. Phil! Thank you for posting a link to change the IDSA guidelines! I was finally diagnosed w/ Chronic Lyme (+17 co-infections/conditions) after going 2 yrs. untreated & on my death bed (literally). I saw 13 traditional Drs to no avail. I finally had to try alternative care. I chose not to originally b/c I believed the “real” Drs would help me. They didn’t! I was drug tested & treated like a lunatic. I never got the rash. My first symptoms were neurological/ psychological & I started losing weight. Soon I was told I had “too many symptoms”. I got down to 90 lbs. I’m 5’4′. I’m afraid to have children & worry I’ve hurt my husband. I still do weekly IV treatments & take 40+ pills a day. I can’t work & insurance won’t cover my illnesses. It is difficult to be such a burden on my family. My friends all disappeared. I spend an average of $40,000.00 a yr. to be able to get out of bed 3-4 days a week ,but for this I am grateful! I can’t help but wonder if it is a biological warefare experiment gone awry w/ the way it is continuously being swept under the carpet. I think God may have allowed your employee to share her fight with you for the good of the rest of us out there Thank you for being one of the “good guys” Dr. Phil! If you haven’t seen the “Under Our Skin” documentary, you should. With our mild winter this year, I fear the possibilities… Thank you for giving us all hope for change! Blessings & Joy, Heather
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By the way, I am from just outside Atlanta ,Georgia…Lyme Disease is (despite popular belief) alive & well in the South! I’ll say it for the rest of us, TICKS SUCK Hang in there guys, help has arrived…Please continue to pray for the “right” ears to hear & eyes to be opened to our unimaginable truth.
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Hello Dr. Phil,
I thank you again for doing a show on Lyme Disease.
Since reading the story/link about the mummy with Lyme, I guess I am now MORE
concerned than before that I may have greatly contributed to the poor health of my son, Darren.
He had heart disease. Shortly before I lost Darren, he was also diagnosed with Marfan. Since learning that I had Lyme, I had often wondered if my son’s may have also contracted the disease through the placenta.
Now I’m learning more and more about Lyme (Thanks to you, your show and your website).
I would greatly appreciate it if you would consider doing a show on Marfan and possibly there might be other parents who may also see a possible connection with Lyme and Marfan. I know my thinking may be a bit “out there” but there’s a lot of stuff that’s out there when it comes to this horrible disease.
Thank you so much.
God’s Blessings,
Cynthia
Dr Phil, thank you for this program. It would be nice in the end if a list of Drs. would be published who would be willing to treat. Most of us have lost hope of ever conquering this disease. Thank You so Much.
Contact your local Lyme Association. There is one in nearly every state. They are in KS and MO even though the CDC says we don’t have Lyme, LOL. The Lyme Association will give you to several doctors in your area. Be sure to ask which ones take insurance and which don’t.
My doc is awesome, but it has been a huge out of pocket expense since the beginning 7 years ago. I was undiagnosed for 23 years and is a long road to recovery.
Good Luck
Vicki
My family has been devastated by lyme..my daughter lost her college education, her athleticism ( she was a D1 top athlete), her friends and almost her mind..I could pass on thousands of stories but we all know them..what we as a group really need to expose is that the insurance companies are behind the funding of many of the studies proving chronic lyme does not exist..if not millions (not thousands) of people would be on treatment right now..the other important little known fact is that there is substantial evidence that lyme originated on Plum Island in New York after wwII when German scientist funded by our government infected ticks with this disease to use as a weapon..deer who migrated through the island back to the mainland spread the disease which ha snow speed over 40 years throughout the country and beyond..just think of the financial exposure our government would have if proven..after battling this disease myself and with my kids for 20 years I firmly believe the insurance companies and yes our government have every incentive to keep this epidemic covered up..yes it’s always about money
Dr. Phil made a comment during the show that he didn’t understand why there is such a controversy over CL. It really doesn’t make sense! Not treating appropriately in the beginning is actually costing the insurance companies and the government more in the long run, because many of the symptoms of Lyme are being treated under other labels (knowingly or unknowingly), and many people are on government assistance and no longer able to work. I am not a conspiracy theorist, but the Plum Island story does make one wonder… It has to be more that Drs who have taken a stand against it being too arrogant to admit they were wrong. Hmmmm?
I posted my husband’s story earlier, and watched your show today. Although it is always difficult for me to watch programs like this without crying, I want to thank you for broadcasting this information. I just wanted to add a comment regarding the IDSA Dr’s assertion that double-blind studies have disproven the existence of Chronic Lyme. Lyme (and its numerous co-infections) is too complex a condition, and the spirochete is too sophisticated an organism to be understood by a simple double-blind. Current research is examining the disease at the cellular level, how it burrows into the cells of a person’s body, coats itself with cellular material, and emerges “camouflaged”, so the immune system no longer recognizes the need to fight it, and it can now move around and indiscriminately invade every muscle, every joint, every organ of the body; how antibiotics (although they saved my husband’s life) can result in encapsulation and dormancy, which result in blood tests that now “prove” the Lyme is gone, when in fact it is just waiting to raise its ugly head once more, just when the person has begun to hope that they are really cured. I am normally a civilized person, but when I listen to people like him, I just want to take him by the lapels of his $$$$ suit, shake him, and tell him to open his eyes to the reality of the horror of the lives of people like those brave souls on your show today, a horror that is the direct result of policies set in place by him and his cohorts. Thank you, Dr. Phil. What more can be done to move this brick wall of the IDSA?
My dh is presently on IV and several other antibiotics and natural med.’s as well. Our Lymes Doc is in Zionsville, IN and has been great.
He was active, a runner, carpenter and roofer. Had much fortitude. When this hit him hard he was never the same 2 yrs. ago after a knee surgery. Our doctor believes he possibly got the tick bite in the Black Forest of Germany where he was while serving our country in the army.
To hear a doctor say that long term antibiotics are not the answer. Dr. Phil even questioning (which I realize that this was his job in this format) this young womans antics frustrated me. My dh is also a Pastor and so calm and collected. He has had Dr.’s when they couldn’t figure out what was wrong tell him he had Cronic Fatigue. Yea right!
My dh was told he had lymphoma, spot on his brain, cancer, heart issues and the list continues.
He has to be in a wheel chair when we leave the house, he suffers with a lot pain. We still have children at home and this has affected our income greatly.
THIS DISEASE IS REAL!
Dr. Phil,
I first wrote to you about Lyme four years ago while sitting in the Dr. Jone’s waiting room. My daughter is now 19 and has battled Lyme disease since she returned home from Block Island 9 years ago. Her Lyme Literate doctors have helped her greatly but she is not cured.
I dare Dr. Paul Auwaerter or any of these other IDSA doctors who say 4 weeks of antibiotics cures lyme to take a transfusion from my daughter or any of these other people they claim are “Fine”. I have lost so much confidence in the medical community and I come from a family of doctors. What about the the oath they took, “to do no harm.” When are they going to admit they made a mistake and look at the new double blinded peer reviewed studies. Why is this new information being ignored and suppressed. They keep quoting the same old flawed studies.
This handful of doctors are controlling the information disseminated to the medical community. I know my daughter would like to participate in the new research being done.
My 9 year old son and I have been battling Lyme for over 6 years, 5 of which we had no idea what we had despite seeing over 25 doctors. Aidan had always been a healthy , happy kid. When he was 3 yrs old he developed a fever and extreme fatigue, we put him down for a nap and when he woke he hoped out of bed and fell to the floor screaming. One look at his legs and we saw that his knees were almost twice the size of normal. We rushed him to the emergency room and he was eventually admitted the hospital where he spent the next 4 days in severe pain as the swelling moved to his elbows, ankles, and hips. Drs misdiagnosed him with HSP and sent him home. After that he was always tired, suffered from blinding headaches, neck aches, and developed strange fears of stairs and eating and the dark, anxieties, aggression, defiance, and OCD. He had terrible insomnia and developed incontinence. He began having strange movements and muscle weakness similar to MS. At around 5 years old it became more neurological with the development of severe and debilitating tics, huge changes in his handwriting and ability to focus and remember things. Our hardest times were when our formerly happy boy developed severe depression – sitting alone in his room and crying and not knowing why he was crying. He would ask us if we’d “ever been so sad that nothing can make you happy” and he would tell us that he felt like he was going crazy. We’d ask him to get ready for bed and we’d find him in his room crying because he couldn’t remember where his pajamas were kept, even though they’d been in the same drawer for 2 years. Through all of this doctors kept telling us that it was just “developmental” and that it would all pass. Through tons of our own research we finally came across Lyme disease. We asked our local infectious disease doctor to run a Lyme test but he refused stating that there was “No Lyme in Texas”. Finally our dog died after a positive Lyme test, and we decided to drive 8 hours where we could find a doctor who could test us. Both my son and I were floridly positive on the Western Blot. We were positive for Lyme and multiple coinfections and Aidan was diagnosed with Lyme encephalitis – swelling of the brain. We flew all over the country interviewing Lyme literate doctors since no one in our state would treat us for fear of losing their license. We decided to see Dr. B in CA. Since then he has had a broviac line placed and has been on IV antibiotics for 2 months. We think we are starting to see some headway with his fears easing up, the tics about 75% better, and an increase in processing speed and memory. We have days where he almost seems like the “old Aidan”. Our insurance company has declined to pay for his treatment, so it has certainly been a financial hardship for our family and I have to wait on my treatment, but like any parent we just want our son back. I thank you Dr. Phil for raising awareness of this terrible disease.
Hi Dr. Phil, I was so excited to see that lyme was going to be discused on your show. However, after watching it was so disappointed. It seems more was discussed about your disbelief and your not possibly believing the people you invited as guests. I think more time needs to be dedicated to this horrible disease possibly researching and speaking to even more lyme literate doctors. Thank you so much to the doctor on your show that is helping people and who agreed to help the poor woman (guest). Hopefully, you can follow up with a more in depth show and get the point that chronic lyme is devastating and is huge!!
I am glad that you ran this program on Lyme Disease. Our daughter has had it for five years and we live in Northern California. It is everywhere and when TV shows, newspapers, run stories about it the general public becomes aware that it is a very dangerous disease. Yes, more money needs to be put into research and what treatment modalities work. The disease becomes chronic and long lasting, even though there are those MDs who say it isn’t. If they contacted lyme and coinfections, their stories would be different. When you see your 31 year daughter unable to get out of bed, going through horrible pain, lyme and its coinfections do exist. Thank God for Lyme Literate MDs out there who are trying to helps those infected. Our government needs to do something to help these folks just like it has for Aids, cancer, and other illnesses. The ISAD is wrong: chronic lyme and coinfections do exist. One Mom who watches daugher suffer.
My partner and soul-mate acquired Lyme with the classic “Bulls-eye” rash in September 2007. After a year of failing health and a myriad of symptoms she passed away in October 2008. She told her doctors that she suspected Lyme, one after another they stated,”There is no Lyme Disease in Canada.”
After her passing, I learned that the “Bulls-eye rash’ is classic LYME.
It is time for the medical profession to learn something and stop their ostrich like perspective on this disease.
Please count your blessings if you have a LLMD! I live in an area w/o a doctor and the closest doc is 4 hours away. If I even mention Lyme to the others they will not see me or as I have often been told “I just don’t know what to do with you”. The only doc in the area that will treat me is a DO, but willing to follow the ILIADS and learn. Stage 3 Lyme has made me the lonliest man on the planet. Because many of us “appear” healthy on the outside, we are never taken seriously by friends and family. As the Psalmist said “tears have been my food”.
Everyone NEEDS to get tested for lyme disease SPECIFICALLY through IGENIX testing labs in Palo Alto, CA. Please google them and give them a call. The basic western blot is test #188 and 189. Note: I am NOT a medical dr. The total cost for the tests are $200. Insurance does NOT cover it.
IGENIX it the TOP (most advanced) lab in the United States for lyme disease and will cover BANDS that most facilities will NOT cover. They also test for co-infections, ie: babesia, bartonella, etc.
Secondly, please please please get your hands on MMS – Magical Mineral Solution and do NOT be scared by what the “FDA” has said about it. They are afraid that if word gets out, they will go bankrupt. MMS kills aids, cancer, HPV, herpes, etc. Mark my word – it has brought my lyme counts down so low that it’s nearly GONE. I have test results first-hand from IGENIX.
I have personal testimonies on youtube – My name is Emily A. Cox
I am happy to talk with anyone. You’re welcome to call me anytime between 11am – 11pm eastern standard time. (802) 922-6609. That’s eight zero two, nine two two six six zero nine.
I will vouch first-hand folks that there IS a cure for lyme disease.
Thank you
Blessings!
-Emily A. Cox
Hello my name is Kelly and I am from Indiana, I have been suffering with Lymes Disease since 2001 and no one in my area will help me. One doctor told me I couldn’t have it because it wasn’t in Indiana, wow!! There are deer everywhere, but I thankfully found a doctor about three hours away who I think may help. God bless everyone!!)
Hello Dr. Phil, we are on the eve of 2015. Can you please do another show on Lyme disease, as there are still too many doctors who just don’t get how devastating this disease is. My dog was treated better than I was.