LÄÄKÄRIN JA HÄNEN PERHEENSÄ KERTOMUS

Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Bb, Sailairina, maranoma, Tiina

LÄÄKÄRIN JA HÄNEN PERHEENSÄ KERTOMUS

ViestiKirjoittaja soijuv » Pe Kesä 12, 2009 19:14

The Womans Day -lehdessä esitettiin 10.6.2009 useiden ihmisten borrelioosikertomuksia, esim. 55-vuotiaan lääkärin kertomus. Hän ehti toimia lääkärinä 25 v. Nyt hän on sairastanut kroonista borrelioosia 5 v. ja on työkyvytön. Myös hänen tyttärensä ja miehensä sairastavat borrelioosia.

"Minulla on ollut oireita jo vuodesta 1995. En tiedä milloin sain tartunnan mutta minulla on aina ollut lemmikkieläimiä ja olen asunut rannikolla.

Vuosien ajan ajattelin oireideni johtuvan stressistä, vaihdevuosien läheisyydestä tms. Lääkärikollegani eivät huomanneet edes selkeitä oireitani. Heidän mielestään oireideni syynä oli masennus jne.

Oireeni etenivät salakavalasti joten en huomannut olleeni todella sairas jo 7 vuoden ajan. Lääkärini kertoi v. 2004 että tautini oli todennäköisesti parantumaton eikä ollut kovin innostunut aloittamaan hoitoani koska hän oli joutunut tutkintaan antamiensa borrelioosihoitojen vuoksi. Monet muutkin pitkiä hoitoja antaneet lääkärit ovat kokeneet saman kohtalon.

19-vuotias tyttäreni sai tartunnan 10-vuotiaana. Hän sai silloin antibioottihoidon ja voi hyvin 2 v. Sen jälkeen oireet palasivat takaisin. En anna koskaan anteeksi itselleni että en tunnistanut tyttäreni uusiutuneiden oireiden syytä tuohon aikaan. En pysty antamaan anteeksi myöskään lääkärikollegoilleni. Maassamme on tuhansittain kroonista borrelioosia sairastavaa, mutta he eivät saa hoitoa muutamien ns. "asiantuntijoiden", kuten lääkäri Alan Steeren, vuoksi.

Olemme olleet tyttäreni kanssa yli kahden vuoden ajan lähes kokonaan sidottuina kotiin. Vakuutusyhtiö vaatii meille hoitoja antavalta lääkäriltä 100 miljoonaa korvauksia hoidoista jotka poikkeavat yleisestä käytännöstä (lyhyt antibioottihoito). Lääkärini on yksi hienoimmista lääkäreistä joita olen tavannut 25-vuotisen lääkärinurani aikana. Hän tietää kuinka sairaita hänen potilaansa ovat ja sen kuinka vähän hoitomahdollisuuksia kroonista borrelioosia sairastavilla on. Konkurssistaan huolimatta hän jatkaa kuitenkin taistelua potilaidensa hoitojen saannin puolesta.

Voitte kuvitella minkälaista elämämme on, kun sekä minulla että tyttärelläni on infektio aivoissa ja "asiantuntijat" sanovat että infektio on helposti hoidettavissa kuukauden antibioottihoidolla - siitäkin huolimatta että oireet eivät parane. Olemme molemmat juuri saaneet kahden vuoden suonensisäisen antibioottihoidon. Ennen hoidon aloittamista olin lähellä kuolemaa suolistotulehduksen vuoksi. Kuinka moni lääkäreistä edes tietää että borreliabakteeri aiheuttaa suolistosairauksia?

Myös miehelläni on borrelioosi. Hänellä on sydänoireita. Hän hoitaa itseään runsaalla liikunnalla. Lääkärini kertoi tavanneensa muitakin borrelioosia sairastavia jotka ovat pysyneet kunnossa olemalla erittäin aktiivisia. Tämä ei kuitenkaan toimi suurimman osan kohdalla sillä monilla on vaikeuksia päästä ylös edes sohvalta.

Minusta näyttää siltä että lukuisat ihmiset ovat saaneet borreliatartunnan mutta he ovat oireettomia. Kukaan ei tiedä sairastuvatko he jonakin päivänä. Jotkut lääkärit hoitavat myös oireettomia potilaita mutta mielestäni se ei ole oikein sillä tällä hetkellä ei ole olemassa testiä jolla voitaisiin osoittaa onko hoito auttanut vai ei. Omalla kohdallani hoidon aloittaminen oli aikoinaan välttämätöntä mutta vointini oli muuten ennen hoitoja parempi. Taudin hoito näyttää olevan vaikeaa vuoden sairastamisen jälkeen. Useiden ihmisten kohdalla tehdään virheellisiä diagnooseja pitkään. Tällaisissa tapauksissa sairastuneet eivät todennäköisesti enää parane mutta heidän tilaansa voidaan kuitenkin hoitaa. Useissa tapauksissa he eivät kuitenkaan saa hoitoa."

Koko kertomus: http://dailywd.womansday.com/blog/2009/ ... versy.html



June 10, 2009
Daily Dose: Lyme Controversy

Most people who get Lyme disease (transmitted by ticks) take a course of antibiotics and move on with their lives. But others seem to experience ?chronic? Lyme disease, which can last their whole lives. These people report problems ranging from dizziness and memory loss to severe fatigue, nerve damage and paranoia. The question: Is chronic Lyme disease real?

For now, it seems to depend on whom you ask. Most mainstream medical organizations say that there isn?t enough evidence to support it, and that sufferers are either imagining their symptoms or developing other problems that are unrelated to Lyme. But there are some doctors and plenty of patients who believe this condition is very real and very serious.

A new documentary, Under Your Skin, addresses this controversy and explains why chronic Lyme disease just might be the next epidemic. It?s being released at the IFC Center in New York City on June 19th, and afterwards will be screened at different venues around the country. To learn more, go to www.underourskin.com or check out the trailer at http://www.youtube.com/watch?v=uSsnMQHIJZk

Do you have Lyme disease? Do you believe that the disease can exist in a chronic, persistent form?

?Barbara Brody, Health Editor

Hear the Woman?s Day health editors live every Wednesday at 12pm EST at http://www.blogtalkradio.com/radioWD

Posted by WomansDay.com Editors on June 10, 2009 at 01:00 PM in Daily Dose | Permalink
Comments

How often do you ask a question and receive more than 50 responses that all say the same thing? These letters describe the disease well. Each of these people probably have symptoms that don't overlap, but I found it interesting that the bare bones of the presentation of late Lyme Disease is easily recognized in their responses.

I am a 55 year old physician disabled by chronic Lyme Disease. I was an Assistant Clinical Professor at Stanford Medical School and Assistant Director of the Emergency Department at the County Hospital in San Jose, CA. I crashed through the glass ceiling. I have 16 years of Emergency Medicine experience, over 20 years of Quality Assurance service at 3 different hospitals, 8 years of administrative responsibility along with my clinical shifts and 8 years of private practice.

I have been symptomatic since '95 and don't know when I was infected, but I have always had many pets, including many exotics, and have lived in endemic areas on both coasts. I dismissed my symptoms for years as perimenopause, stress, whatever I could convince myself of. My doctors dismissed even objective signs of illness as depression or PTSD. The illness progressed so insidiously that it wasn't obvious to me that I was truly sick until at least 7 years after my first symptoms. The Lyme specialist who diagnosed me in '04 told me I was likely incurable and wasn't enthusiastic about treating me (he was under investigation by his medical board, an experience many of the doctors who take care of this group of patients have shared with him).

My 19 year old daughter had acute Lyme Disease when she was 10, was treated and did well for 2 years, then began what I now would have recognized as the insidious progression of chronic tick-borne illness, but at that time, I didn't know. I don't think I will ever forgive myself. I also don't know if I can ever forgive my so-called colleagues for this. There is no excuse for this "controversy". There are many thousands of chronically ill people in this country who are being neglected because of a handful of "experts" who are either very stupid or very evil. My understanding (hearsay, but good hearsay) is that Dr. Alan Steere requires body guards (the rheumatologist who named it Lyme Disease when he recognized a cluster of cases in Lyme CT in the late '70's but didn't recognize that the disease had been described a century or so before in Europe).

My daughter and I have been nearly housebound, together, for over 2 years. We travel to South Carolina when we are physically able to see an Infectious Disease specialist who treated HIV for 20 years and now Lyme Borrelia Complex, as he calls it, for a decade. He has been harassed by a medical board, sued for $100,000,000 by Blue Cross for overcharging them for non-standard care and been forced into bankruptcy. Yet he continues to fight. He knows how sick his patients are and how limited are our options. He is one of the finest doctors I have met during my 25 years of medical practice or my 5 years as a patient. Yet a weaker man would have quit long ago.

Can you imagine having an infection in your brain and having a child who has an infection in her brain and being told by the experts that it is a trivial infection that need only be treated for a month, even if it isn't better? My daughter and I have just completed 2 years of an IV protocol that shows clinical promise, but the research isn't being done. I was almost dead when I started (had just lost a foot of small bowel to "enteritis" and a bowel obstruction, after a summer in the hospital being cared for by doctors who wouldn't even consider that I might have had a chronic infection affecting the picture. I was too sick to help myself and they almost lost me. Long story, but a good surgeon finally saw me, transfused me and operated on me that day. I will always wonder if some antibiotics would have prevented that surgery, not to mention that I probably do have autoimmune inflammatory bowel disease, triggered by the underlying infection. What percentage of family doc's in this country even know that Lyme Disease can cause GI problems.

I don't really understand the politics, but I do personally consider the northeast uninhabitable. I am a New Yorker, spent summers in the Hamptons, lived in Cambridge to attend Radcliffe in the early '70's, practiced Emergency Medicine in CA from '81-'96 and was living in the Berkshires from '96-'04, so I've had lots of tick exposure in my life.

My husband also has chronic Lyme involving his heart, but has managed to remain fairly stable; he is an athlete and continues to participate in extreme exercise. Our ID doc says he has seen a few other patients who seemed to be able to control their disease by being extremely active, but this is not an option for most of us. Many times getting off the sofa seems like a huge challenge.

I was nursing my youngest son when I had my first symptoms. He is now 14 years old and clinically well, though he has suspicious serology and known tick bites. Lymie kids usually have behavioral and academic issues, but he has a 4.2 GPA in the 9th grade, after skipping 6th grade, and this year, he was awarded the "Bright Light" award for being the student in the school who most embodies "compassion and integrity". I don't think he should be treated, nor did the only Lyme pediatrician in the country, but I pray every day that he will stay healthy. He had bronchitis a couple of years ago, took Zithromax and did not herx. Nobody knows if asymptomatic people who have been infected will eventually get sick or not. There seem to be certain HLA types that can predict a poor prognosis, so it seems likely that there are types that may assist people in staying healthy after an exposure. However, I have heard of several people who describe "one bite too many" rather than one bite, so I don't think my son will follow me to Harvard, or any other school in the northeast.

We now live in Santa Fe, NM. We have 4 dogs and have seen only one dog tick in 4 years. In MA, we saw ticks every day; if you walked down our very long driveway, you had to pick the ticks off your pants when you got home. It worsened noticeably during the 8 years we lived there. Has anyone told you that the most dangerous ticks are nymph deer ticks? They are the size of a poppy seed or the period at the end of this sentence. My guess is that many people are infected and not sick; my son may be one of them. We don't know if they will get sick eventually or not.

There are Lyme doc's who treat asymptomatic people that they think are infected, but this does not seem right to me. For one thing, there is no way to know if your treatment has been effective. Also, I became much sicker when I went after it; I had no choice, because I was slipping fast at that point, but things were definitely better for me before I tried to treat it. I don't think this is a common history, but still, until we know more, if I were asymptomatic, I would leave well enough alone, unless perhaps if I knew somehow that the seroconversion had occurred fairly recently. The disease seems to be harder to treat after a year. As you probably noticed from the other responses here that many people are misdiagnosed for much longer than a year. These people are most likely not curable, but they are treatable and they are being denied treatment.

I could go on and on, but I'm sure you don't want me to. I hope what I've written is coherent. It is late, I am too tired to reread or rewrite it and I am feeling pretty Lymie, so it may not make as much sense tomorrow as it seems to now.

So I agree with the others. The answer to your question is yes. It is a travesty that time is being wasted arguing a question that has already been answered, while thousands of very sick people are marginalized. The only Infectious Disease specialist in this town won't see a patient who says they have chronic Lyme. He says he doesn't know how to treat it and it hasn't gone well for him in the past. He can get away with it because there aren't very many Lyme patients here. But would he not try to help a patient with an unknown infection that he couldn't seem to treat successfully? Just because a doctor can't cure a patient doesn't mean he can't help. I wonder if there is any other infectious disease that he refuses to even see.

Good luck with your article. Feel good about what you are doing. Any information you disseminate about how horrible the chronic form of this disease can be is a good deed. By making people aware, you may save lives.

Posted by: Jamie DJ | June 12, 2009 at 04:39 AM

This is such an important topic to bring to the attention of the general public and medical community. If more people understand how common Lyme actually is and how devistating it can be, maybe we can start to find treatments, cures and perhaps prevention of it in the first place. Any way to get the information out via articles, blogs, features on radio programs, screenings of "Under Our Skin" etc. is a step in the right direction.

Posted by: Nancy B | June 11, 2009 at 07:51 PM

I was diagnosed with late-stage lyme early last October. The diagnosis came after 10 years of crippling migraines, coupled with a myriad of neurological, psychological and physical symptoms. Dizziness, confusion, muscle pain, fatigue...name a symptom, I was there. By the time I got to a neurologist I had been icing my hands feet and thighs for phantom burns I could feel but which had no known cause. Apparently this is the joy of neuralgia. What really prompted the appointment, however, was a near swoon while walking across my kitchen with a handful of knives.

By the time I was finally diagnosed I was so glad to put a name to what had been called everything from sleep deprivation to depression to boredom that fear and anger took a few days to sink in. The reaction to my daughter's diagnosis of congenital lyme just before her ninth birthday this February was more immediate; sobbing out my anger and guilt, screaming at the steering wheel in mid-afternoon traffic.

This is real. There is no doubt. The only reason for anyone to deny the existence of chronic lyme disease is financial interest. As long as insurance companies can get by paying minimal amounts for insufficient treatment they will. How long ago were MS and Fibro Myalgia viewed in this same light? It wasn't until enough people stood up and demanded attention that pharmaceutical companies developed magic bullet pills to treat these diseases that they were even considered credible diagnoses. How long will it be for us? How many of us have to stand in the street shouting ourselves hoarse before someone hears?

Posted by: Ashley | June 11, 2009 at 07:50 PM

My 15 yr old daughter had the bullseye rash. The Dr. said we don't get lyme here, but I demanded Doxy. Her grades started to slide. At 18, a terrible rash, tested positive for Rocky Mtn Spotted Fever. She spent the whole summer sleeping - with a fever, despite the 3 wks. of antibiotics. We couldn't get any Dr to prescribe more drugs, except they wanted to give her steroids. Then it went into remission (we thought she was cured) and she went away to college. But not for long. She was diagnosed with hallucinations, bi-polar, paranoia, you get the picture. We finally got her to Lyme Literate Dr. that properly diagnosed her with Lyme and all the co-infections - after seeing 25 doctors! But the Dr. was being shutdown for treating patients for more than 3 weeks of medication. We were lost. Eventually she went into Granmal Seizures. We almost lost her. When the Dr's found out at the hospital they said, "Not a Dr. in this hospital will treat your daughter for Lyme in fear of losing their license". We dropped everything and moved with just the shirts on our backs to a more enlightened state. Both my wife and I care for her 24/7 for the past 2 yrs. Having spent our life savings we are now selling the home we left behind to continue her treatments. None of the treatments have ever been covered by insurance. Its like living in Quantanimo. God help us all.

Posted by: Mike | June 11, 2009 at 07:34 PM

Regarding does it exist... there is plenty of evidence going back 30 years+ and in European scientific literature. See http://www.lymedisease.org/news/lymepolicywonk/82.html and click on link to Volkman's letter to the IDSA panel review team.

And our personal experience and many others provide more evidence. Our whole family got sick with lyme after moving to the Philly suburbs, lyme that went undiagnosed too long and into the chronic stages. I started a support and activist group b/c of what we experienced and the impact on our kids (we're 90% recovered and functional as a result of long-term treatment)and the families that came out of the woodwork in response to an education session we held at our school. From one county in Southeastern PA, I could provide you with a roster of well over 100 documented, assembled just in the last 6 months, "chronic" lyme cases, many of them in kids. There is no question it exists -- the question is - how is this epidemic being managed by our public health authorities? Poorly - the dithering over an already answered question (e.g. does it exist), has prevented us from getting a jump on this to prevent more cases, and to figure out better treatments and real cures. Please tell some of the stories of the kids affected by Lyme AND how they DID in fact get better once properly diagnosed and treated. People and families and communities should be outraged at how this disease is being marginalized and under-diagnosed/treated. There is no question it exists -- follow the science. Thank you for calling attention to this issue!

Posted by: Julia from SEPA | June 11, 2009 at 06:36 PM

Yes.

http://www.philadelphiaweekly.com/news- ... 68994.html


Posted by: tara murtha | June 11, 2009 at 06:05 PM

Please if you can do more than a radio show. Please see if you can do an article in your magazine as well. You would be helping out a tremendous amount of people by doing so.

Thank you!

Posted by: RIckey Wagner | June 11, 2009 at 05:30 PM

I have had chronic Lyme for years. The health insurers have their lobbyists paying to cover up how serious the illness is and how many other common diseases it may be causing. The test is entirely unreliable in almost every standard lab. If you contact the California Lyme Disease Assoc. or the Lyme Disease Assoc.in New Jersey you'll get the truth, and if you publicize it you'll be doing your readers and everyone they talk a tremendous service.

Posted by: Bob Morgen | June 11, 2009 at 04:25 PM

I have suffered for 15 years with this disease, but no diagnosis till last year. Bizarre neurological symptoms, painful arthritis, blurry vision, crushing fatigue, insomnia, cogniive problems, heart arrhythmia, near-syncope, the list goes on and on. When my fingers started locking into a clenched position, causing me to have to carefully pry them open, I knew something was very wrong. About 20 doctors over the years all missed the diagnosis. Now I have disseminated disease - it is in all my organs. I have been on multiple antibiotics for a year, and altho some symptoms have disappeared, I am still very sick. Chronic Lyme exists, it is pandemic, and the lid is about to blow off this Lyme thing very soon. The actions of IDSA are CRIMINAL.

Posted by: paulieinct | June 11, 2009 at 02:59 PM

I've had Lyme for several years and realized the conventional route was not cutting it. I found this athlete's site http://www.beatlymedisease.com and apparently it took her several years to get over Lyme but did so successfully.

Posted by: Jenny Taylors | June 11, 2009 at 02:40 PM

Chronic lyme is very real. I live it every day. I was sick for years, bouncing around from Dr to Dr having every test done under the sun. Finally, in 2007, close to death, I was diagnosed with Chronic Fatigue Syndrome (which is actually Lyme disease-Read the book "Cure Unknown" by Pam Weintraub)

Tests from Igenex Labs in Ca came back CDC positive for lyme. I am also clinically diagnosed with two co-infections. My husband contracted these infections from me and my newborn son may also be sick.

We spend several hundred dollars a month on Dr visits and treatment and that is with excellent insurance. If not for that, we would likely die from lack of treatment.

Lyme is a similar bacteria as syphillis and no one is talking about the similarities. Syphillis can become chronic as well it is sexually transmitted. The same holds true for lyme.

We need help. We need a cure. We need insurance and doctors to treat us and pay for treatment. Where is the compassion?

I alone know 16 people that may have lyme. That was before I knew anyone from the lyme-world. Sad. This disease is VERY widespread. The truth will come out and it will be an unfathomable disgrace to humanity.

Posted by: J Hurd | June 11, 2009 at 01:58 PM

Thanks so much for all of your comments and stories. Since there is so much interest in this topic, we're thinking of devoting one of our Radio WD programs to it, perhaps in the next few weeks. I'll be sure to let you know the air date. In the meantime, check out past shows by going to http://www.blogtalkradio.com/HealthyYou

?Barbara

Posted by: Barbara Brody | June 11, 2009 at 12:05 PM

YES CHRONIC LYME IS REAL!! Thank you for expressing interest in this story and bringing attention to chronic lyme. My story is long and tedious and continous to be a daily struggle every day just to survive, getting proper treatment is another horrible ordeal. What i've learned from this ORDEAL is the horrors of the American Medical Society. How many doctors sent me away with sooo many little diagnosis, or with "it's just in your head". I saw endless amount of specialitst in a 12 month period and they all amazingly found something wrong with me in thier own field....none could see the bigger picture. Have we micromanaged medicine that much??? My condition meanwhile detiorted to the point where i can no longer leave the house without assistance because i may fall or worse yet, get lost. Now i have a diagnoses because of a spinal tap and I still can't get treatment. Lyme is an infectious disease. We treat TB and HIV with long term medicine, why would we treat Lyme with only 2 to 4 weeks of antibiotics and expect it to be done with - how does that make any sense??????

And the testing for Lyme? I live on Long Island, NY. Stony Brook University researchers last summer made a big announcement that they "discovered" TWO new strains of Lyme. They even admitted that if they just "found" them that NO test out there can be looking for them. HELLO????? It's sort of like the flu shot, no? The test is only looking for some strains. If you are "lucky" enough to have that one, then you may come back positive. If the spirochetes were "nice" enough to be in that sample of blood that was taken, because we all KNOW that the researchers KNOW that they hide.
Please keep spreading the word on Chronic Lyme it is real. People like Dr. Oz are harming the Lyme community when they speak out against it. I hope the Lyme community stands together and sends him a message and won't give him ratings by NOT watching his new show - and let him KNOW why.
Andrea T.

Posted by: Andrea T | June 11, 2009 at 11:16 AM

Yes, it is real. I got two nasty bites a couple of years ago that my GP (who did not believe it was lyme) treated with a steroid. Steroid treatment is like gasoline on a fire with Lyme.
A year and a half later I had pains in my internal organs, my back felt as if it had multiple ice picks in it, my hands constantly went numb, my knee, hip and finger joints had horrible pain and then profound cognition problems started. I was an avid reader, but found I could no longer read more than a few sentences at a time without losing my train of thought.

I have now been treating for a year, and though I am not symtom free by a long shot, I am getting better. Long term antibiotics work. These doctors who dismiss chronic lyme "out of hand" are at best failures at their profession and at worst criminals.

Listen, this question should be asked:Why would a group of very active people (and chronic lyme folk are usually folks who have had a very full, active, outdoor life. I was a big hiker and camper.)suddenly wish to become inactive and take a ton of antibiotics? We are not crazy, we are in pain.

Posted by: J. Clark Nicholson | June 11, 2009 at 09:47 AM

Yes, of course chronic Lyme is real. I have a rather classic case of it. We had a summer home on the Long Island Sound growing up, which is ground zero for Lyme. I was exposed repeatedly and became terribly ill with all the usual symptoms: insomnia, memory loss, pain, crushing fatigue and swollen knees. I still suffer these symptoms, which respond to antibiotics, so I'm a firm believer in chronic infection. I also make my living as a scientist, so I can tell you that the science is clear - Lyme can persist in the body, it can resist short-term antibiotics, and it is becoming a pandemic.

Posted by: Borrelia Brain | June 11, 2009 at 09:11 AM

I have Lyme. Many have told me I don't even though I have a CDC positive Lyme test and just about every symptoms of the disease. When I go off treatment my symptoms return, on treatment I am functional. For now that is all I can hope for. I am a nurse and a mother and am horrified at the controversy over this disease. Doctors need to treat patients for symptoms, not ONLY based on testing that has been proven to be SO flawed. I have often said I would strongly prefer to have cancer, as then people would actually take me seriously and help me. Luckily I have found a doctor who is willing to help me...but so few know what the "best" treatments are, as the controversy over-shadows what really needs to be talked about which is what is and is NOT working for treatment.

Posted by: Blythe Clinger | June 11, 2009 at 08:55 AM

Thank you for posting this story! We have a chance to make a difference by spreading the word about Lyme disease and their co-infections. We can help more people than you can possibly imagine. It's a story bigger than you think. My entire family suffers from Lyme Disease and we are on the right track now, however it was hard to find. Most people never find that track.

Posted by: Lorrie N | June 11, 2009 at 07:26 AM

As a family recently touched by Lyme (my 2 1/2 yr old son), we are shocked at the medical community's failure to treat an illness that does exist in chronic fashion. I am awaiting testing next month to see if I have it as well. PLEASE, PLEASE help get the word out. It is a serious illness that needs attention. We are seeing a LLMD (Lyme Literate MD) for my son's condition which is only Lyme and Bartonella, thankfully! He never had a bullseye rash, we never saw a bite and we never saw a tick (stats I've seen in my research vary from 30-50% of the time that the rash actually appears). He did have swollen lymph nodes last summer that I think meant Lyme (lasted a week or more and went to the pediatrician). He also had a rash but they thought it was hoof, foot and mouth because that was going around. I think it was all Lyme - we just didn't know it. I can't prove it, but that's my instinct. This was over a year ago; a problem being diagnosed so late as it's harder to eradicate the bacteria from your body. It's very scary as you may not have symptoms that you would even link to Lyme. Since he's so young, we can't ask him how he's feeling. Lyme was diagnosed because he fell in the house while we were playing and his right knee swelled up for 4-5 days, we had x-rays taken with no visible fracture and an orthopedic though it was Lyme (thank goodness as the blood results showed positive). Even the blood tests they do according to CDC guidelines are ridiculously frustrating - you need an independent lab look for certain bands. He seems to be responding to antibiotics but we won't know how well until our follow-up visit. I was told by my pediatrician's office that we shouldn't really see the physician in New Haven, CT because he's been investigated by the CT Medical Board, he's on the fringe, etc. Well, if he's going to help my son and he's helped THOUSANDS OF CHILDREN...Wouldn't any parent do what they could? Any rational person who does any research on Lyme Disease can see it's under-reported or not accurately reported by the CDC. One cannot understand the medical community's refusal to help those people who have chronic Lyme. It's not in their heads. There are now LLMD's who think Chronic Fatigue Syndrome (CFS) and Fibromyalgia may be Lyme. It's not in people's heads - its' REAL and Lyme sufferers need help especially our children! Thank you for helping to promote the film, Under Our Skin! I pray people wake up to the devastating effects of this insidious disease so research funding can occur, a vaccine to prevent Lyme, insurance will cover it, etc, etc....Meanwhile people continue to suffer. It's very sad! Please keep spreading the word!!

Posted by: N Peck | June 11, 2009 at 06:56 AM

I have a family member with chronic lyme. It is chronic because it was never diagnosed until at least 2 years after infection. This person is a young man of 23 years who was once a hard working college student and is now completely house bound and disabled. He is currently seeing a doctor who "believes in" chronic lyme and we are seeing slow, but steady, improvement.

Posted by: M. Kearney | June 11, 2009 at 06:38 AM

There should be NO QUESTION in the medical community that chronic Lyme exists. There are SO MANY cases (real people's lives !) that prove it - as well as cold, hard facts from the labs. I had total deafness in one ear, and many of the above-mentioned symptoms before being tested & diagnosed with Lyme. That took two years. Original diagnosis was a "viral infection" from the ENT specialist, then MS from the neurologist. I guess I'm one of the lucky ones whose insurance pays (I'm still being treated 3-1/2 years later), and am able to keep working. A CURE NEEDS TO BE FOUND SOON !! People are suffering.

Posted by: Vicki | June 11, 2009 at 06:37 AM

Barbara, thank you for writing the above article! We are pleased to see it there.

Yes, UNDER OUR SKIN dvd tells the complete lyme, war controversy story.

It's bad enough to fight to get drs. to treat us, but to enter this unsuspecting war is pure HOG WASH!

I've had chronic lyme for 39.5 years; 34.5 yrs. MISDIAGNOSED BY 40-50 DRS!! UNACCEPTABLE!!

We didn't know that 300 other illnesses MIMIC lyme including thesE: ALS, MS, parkinson's, bell's pulsy, Alzheimer's/dementia, fibromyalgia pain, chronic fatigue, most mental illnesses, & list goes on.

Lyme statistics for 50 states link:

1980 ? Jan. 2008 ?all 50 states broken down by years!

http://www.lyme.org/resources/1980-cumulative.htm


Please follow up your article with more lyme and co-infection/meaning other illnesses the ticks carry!

Thank you Barbara for a job well done!

BettyG, Iowa lyme activist

Posted by: Betty G, Iowa lyme activist | June 11, 2009 at 01:45 AM

Is it real?
4 members of my family have chronic Lyme. My sister and mom spent 18 months at a clinic- far away from home- my sister has a 5 year old she left behind. They were on IV antibiotics 7 days a week, and could hardly do anything besides go to the clinic and sleep. My sister has had Lyme, Batonella & Babesioses since she was young- and it is destroying her life. It's a joke that people question it's existence- they usually don't when someone they love gets sick with it.
My sister almost died- and doctors misdiagnosed her too -made her feel like she was insane.

more people need to be aware of this- to take precautions...
IDSA needs to change the guidelines so that people can get proper treatment and insurance companies will stop balking at the necessary costs- it's cheaper to treat it throughly at the onset rather than wait until it's migrated throughout the body and through every system.
THAT's what I can't believe is real!
Please write about it- to educate people, to generate more dialogue- to hopefully create some change in policies.

Posted by: Allison | June 11, 2009 at 12:11 AM

Hi, saw you were speaking about Lyme via my twitter account. I saw the movie and it is worth the watching. Some people have gone through so much with these pesky ticks. I feel for your reader that have encountered Tick Diseases. On a liter note, to hear a showtune style song I wrote, "The Tick Song" you can hear it @ www.MySpace.com/MsDawnTheSingingNurse
Enjoy...Dawn Ginese, RN, TSN

Posted by: Dawn Ginese, The Singing Nurse | June 10, 2009 at 11:08 PM

Myself and my three children have lyme. We travel hundreds of miles from home to get treatment for our children. Even the best chidrens hospitals refuse to help. It is very scary that chronic lyme disease isn't recongnized in our country. Without treatment I believe I would not be here. I am only in my 30's and hate to even think what my life will be like in another 30 years, and especially what the future holds for my children. Thank you so much for considering putting an article in Womans Day.

God Bless!

Posted by: mother of 3 | June 10, 2009 at 11:05 PM

I have chronic lyme and so does my twin sister. We are both 50 and we've probably had it most of our lives. I've been in treatment for over three years and my sister for two. We are both slowly improving but it's a long tough battle.

I was a very successful sales executive before I had to quit work permanently a couple years ago. I hope to go back to work but right now I'm too sick.

We need more research for better testing, better treatment and a CURE. Too many people are suffering (most without a proper diagnosis) - especially the children.

Lyme awareness has been improving but we have a long way to go.

Posted by: mary hopkins | June 10, 2009 at 10:56 PM
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