"Kerron tarinani julkisesti koska näin vuosien ajan mitä sisareni joutui kokemaan. Aloin ihmetellä kuinka monilla muillakin on samoja ongelmia oikean diagnoosin saamisessa. Löysin sadoittain samanlaisia tapauksia. Sairastuneet olivat saaneet mitä erilaisimpia diagnooseja kuten fibromyalgia ja MS-tauti. Sisarellenikin kerrottiin hänen sairastavan MS-tautia ja hänelle aiottiin aloittaa kortisonihoito. Kortisoni heikentää immuunipuolustusta ja mahdollistaa siten bakteerin leviämisen elimistössä. Onnekseen hän alkoi omatoimisesti selvittää oireidensa syytä.
Omalla kohdallani en huomannut koskaan punkinpuremaa enkä ihomuutosta. Siksi en välittänyt pitkään aikaan oireistani. Tiedän että monilla ihmisillä on samanlaisia kipuiluja eivätkä he mene niiden vuoksi tutkimuksiin, tai sitten heidän oireilleen ei löydy selitystä... Olen huolissani niiden puolesta joilla ei ole varaa matkustaa usein pitkiäkin matkoja löytääkseen borrelioosiin riittävästi perehtyneen lääkärin. Olen myös huolissani siitä että bakteeri voi hoitamattomana mennä sydämeen, aivoihin ja voi aiheuttaa esimerkisksi sokeuden. Toivon, että lääkärit opiskelisivat asiaa paremmin ja diagnostiset menetelmät tulisivat paremmiksi. Kaiken kaikkiaan on erittäin tärkeää tutkia asiaa itse."
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The Lyme Controversy - ABC 13's Noreen Turyn Tells Her Story
Thursday November 08, 2007 3:49pm Posted By: Webteam
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Lynchburg, VA - There are thousands of Virginians with the same symptoms -- unexplained aches and pains, low grade fever, fatigue. They have Lyme Disease. ABC 13 News Anchor Noreen Turyn is one of them. For her special report, The Lyme Controversy, she sat down with ABC 13?s Len Stevens to talk about her series. Here is that interview.
Len - First of all, why did you decide to tell your story?
Noreen - After knowing what my sister had gone through several years ago, then learning I'm going through it, I wondered how many others are having trouble getting diagnosed and I found hundreds upon hundreds of stories and thought, I have to tell this story, I'll put my own out there if it makes people listen, because I know of people right here in this community diagnosed with firbromyalgia, MS and feel like if that's not actually what they have, if it actually started with Lyme Disease, they really need to get treated, and maybe their suffering will go away.
Len - You mention your sister, tell a little more about her case.
Noreen - It was horrible as children. She was in agony for a year. She had the bite, the bull?s eye, but Lyme Disease hadn't been "discovered" yet. My mother wrote anguished letters to doctors, researchers, Yale knowing the bite and rings had to do with her pains, but no one would listen to my mom.
Finally in 1975 Dr. Allen Steere with Yale found a group in Old Lyme CN all with similar conditions, and called it Lyme Arthritis. In 1978 he wrote a letter to mom that my sister's was earliest case he knew of, hers being in 1967, but I called and found there have been many more before hers.
Len - So then as an adult, she's told she has MS.
Noreen - And we were so upset to hear that news. But I'm so glad she's such an unrelenting and excellent researcher and found a connection to Lyme and she learned, and docs I talked to back this up, it can sit dormant in your system; hide for decades as it did with her. Lyme can affect different systems. Hers was neurological.
They had put her on steroids for MS, she learned the wrong meds can make you worse because the spirochetes can thrive on it. So I worry about other patients who might have gone through this.
Len - So her story led to your awakening.
Noreen - Yes and I really just thought she was overly sensitive to the idea because of her own story, but I'm glad I did go to a LLMD, at least I did get a diagnosis however I'm not better yet.
Len - And you ignored your symptoms for a long time.
Noreen - Yeah, I didn't have a bulls eye, don't remember any rash. I didn't remember a tick bite that I'd gone to the doctor for sometime around the time my symptoms first started. And that's typical of a lot of people, you don?t always get a rash, which is scary. That's another reason I'm telling my story, I know there are a lot of people out there who are just like me, explaining away various aches and pains and I want people to be more alert as to what their body may be telling them.
Len - How are you feeling what's going on with you?
Noreen - A lot of people that I see daily, weekly are probably surprised to hear I'm suffering from LD. You can't look at someone with LD and know what's going on inside. Only my closest friends know the real deal. The pain is very bad, and wavers between high pain days and extremely high pain days. I wake up a couple times in the night, sometimes I can go back to sleep, sometimes I lie there with my mind racing over things. I wake up exhausted every morning. Tire out easily. But I love my job, and that's what has kept me going in every day. I've only called in late a few times, mostly because I was just so exhausted that I needed more sleep. It's hard to work through, you can?t ignore it. It's like torture, like someone holding your eyelids open, because you just can't escape it. And the thing is, my case is not the worst of them out there. There are horror stories of others debilitated from pain and exhaustion, some people have lost their jobs.
But I'm on a prescription pain pill now that really helps lessen the pain, plus it has an added benefit of giving me energy, so that's what gets me through the work day. But once that thing wears off, I'm back to feeling rundown.
I've gone home on my lunch break or after work and cried a few times, initially because of fear of what's going to happen to me, other times because I hit my breaking point, but then I come around.
But, true, the pain is no fun, but I'm not disabled at least not yet, and at least I don't have cancer or some other terminal illness.
Len - So now you drive all the way to Chesapeake to see a doctor?
Noreen - Yes what the International Lyme and Associated Diseases Society calls a Lyme Literate Medical Doctor. They have a much deeper understanding of the illness. I'm so glad I did. Dr. Bellovin spends an hour and a half with me on my visits. She says that's because her company, Bayview Physicians, allows her to have that luxury and focus on quality of care.
Dr. Fishman told me the same thing about his Lyme patients, that he has long appointments. None of this 15 minutes "see ya in 3 months" business. It really is amazing. Unfortunately Dr. Fishman says they need help, says there are plenty of patients for everyone, jump on board! I mean these docs are not very many, spread throughout the country. I only found 4 in Virginia, so they're not going to a lose case load if others become LLMDs.
Len - Do you blame regular doctors for not being more well versed on this?
Noreen - Yes and no. Infectious Diseases specialists are probably more well versed on it than other family physicians, but in my case, I didn't even think of having something like that when I first went to my family doctor. Lynchburg Infectious Diseases specialist Dr. Brennan agrees, especially when you're younger, 40s, even 50s and complaining of pain that usually comes much later in life, that more doctors do need to be considering Lyme as a diagnosis.
But the thing is, because LD mimics so many other things, it IS hard to make a diagnosis. As the number of Lyme cases continues to grow, perhaps more doctors will be more up on this disease. But yes, it is frustrating that the doctors you trust may not know everything and that's why it's SO important to do your own research and take charge of your own health, no matter what your ailment, not just with LD.
Len - Are the numbers growing?
Noreen - Every year. But the thing with CDC (website - news) reporting and everyone agrees with this, only about 10% of the actual cases out there, Dr. Fishman believes it's even fewer than that, are being reported. It's partly because patients are misdiagnosed but partially because of some of the reporting guidelines the CDC uses require that a bulls eye rash be present, and they exclude a number of factors, a number of types of Lyme a number of different pieces of information, really too complicated for me to explain.
Len - The treatment is a big controversy.
Noreen - Yes, short term vs. long term antibiotics. Long term can be risky can cause other health issues, resistance, but it is frustrating if it's true these LLMDs have found a way to help their patients, and in 2/3 of their cases they're seeing positive results with long term antibiotics, I think that data needs to be given more weight, or better documented.
And if the long term ABX cures them of their ailments, then maybe it wasn't Fibromyalgia, it wasn't MS, it wasn't Chronic Fatigue Syndrome, etc. etc.
Len - Because we learned that you don't always get the rash, so you don't always know if you've been infected right away, what do you do if you get a tick bite?
Noreen - I asked Dr. Bellovin, if you find a tick on you, should you get antibiotics right away and not take chances? Her short answer, that couldn't hurt, but you should also be aware that if you take ABX, that can mask any antibody response, so if you then wanted to be tested, it could be negative. Up to you if you don't want to risk it. Really this is one to talk to your doctor about.
Len - And then what about those who see this story and wonder if it's their problem?
Noreen - Dr. Bellovin says if you trust your doctor, go back and ask them to consider Lyme as an option. We put a list on our website you can print and take to your doctor that could help with the diagnosis. But then of course there's the problem with inaccurate tests, but the CDC again urges doctors not to rely on those as a sole diagnostic tool, but rather a tool to help.
Len - What are your biggest frustrations?
Noreen - I worry about people who can't drive or fly to see an LLMD and aren't getting a proper diagnosis. I'm frustrated there doesn't seem to be an easy solution to the controversies that exist and are people suffering?
I'm frustrated if some insurance companies are denying coverage of certain things related to this. What about people that can't afford to make up the difference? But that frustrates me with ALL medical cases, not just Lyme disease. Lucky so far my insurance has been very good.
And I'm really worried because if it's not treated it can go into your heart, it can go into your brain, can cause blindness, it can cause very, very serious health issues, and so it is a serious health issue that needs to be taken care of!
I just hope those in the medical community who may not be as well versed on this, will learn much more on both sides of this argument, and better diagnostics, and maybe fewer people will suffer in the long run, but again, as a patient, do your own research, it's very important no matter what your ailment is.
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ABC 13:n uutisankkuri Noreen Turyn tuntee taudin sillä hän sairastaa sitä. Tauti diagnosoidaan usein virheellisesti MS-taudiksi, krooniseksi väsymykseksi, lupukseksi, fibromyalgiaksi jne. Michele Sprucen lääkäri kertoi tämän oireiden olevan mielikuvituksen tuotetta ja että tämä tarvitsee psykiatrin apua.
"Kävin urologin, neurologin ja useiden muiden lääkäreiden vastaanotolla eikä yksikään tehnyt borrelioositutkimuksia. Vasta kaksi vuotta sitten yksi lääkäri tunnisti oireet, lopetti kaikki siihen asti käytössä olleet lääkkeet ja aloitti antibioottihoidon." Kuudessa kuukaudessa Michele tuli kuntoon ja meni takaisin töihin joksikin aikaa. Koska hoidot aloitettiin liian myöhään ei tautia saatu kuitenkaan kokonaan hoidettua joten Michele on nyt työkyvyttömyyseläkkellä.
Tri Norton Fishman on borrelioosiin erikoistunut lääkäri: "Olen tehnyt töitä 42 vuotta ja kokemusteni perusteella voin sanoa, että borrelioosi on yksi vaikeimmin diagnosoitavista ja hoidettavista taudeista. Huomasin että suurimmalla osalla (80%) aiemmin hoitamistani väsymys- ja fibromyalgiaoireista kärsivistä oireiden syynä oli borreliabakteeri.
Noreen: Olette siis sitä mieltä, että monet sairastavat borrelioosia tietämättään?
Tri Fishman: Ehdottomasti
Tri Fishman: Paremminkin miljoonat.
Infektiotauteihin erikoistunut lääkäri Robert Brennan: "Aiemmin sanottiin, että kupan aiheuttaja on "suuri imitaattori", sillä se aiheuttaa mitä erilaisimpia oireita, kuten halvaantumisia, dementiaa, sydänsairauksia jne. Borreliabakteerin kohdalla on kyse samasta asiasta. Borrelioosia on vaikea diagnosoida, koska nykyiset testit ovat epäluotettavia, ihminen ei ole välttämättä koskaan nähnyt itsessään punkin- tai muiden verta imevien hyönteisten puremia eikä hänelle ole tullut ihomuutosta tai hän ei ole huomannut sitä. Borrelioositestien epäluotettavuuden vuoksi diagnoosia ei tule perustaa niiden varaan. Sen sijaan tulisi tehdä salapoliisityötä. Valitettavasti vain harvat lääkärit kuitenkaan kuuntelevat potilaitaan riittävästi. "
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