Topic: Are there states in the US that refuse to treat people for Lyme?
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm just curious about the procedure for people with Lyme in different states.
Are there states in the US that don't recognize Lyme or refuse to give people treatment? Is this more an insurance formality or is it the case even if you pay out of pocket for your treatment?
I guess it came up in my mind due to a thread I posted about the Fibro & Fatigue Center. In some states, they will not give treatment if the Fibro or fatigue is from Lyme.
I'm moving to another state. I'm using alternative medicine but I'm just curious about this.
Is there a difference if you move to a state that claims there is no Lyme there, as opposed to getting Lyme in the particular sates?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well i don't know if this is the same thing or not, but i went to lots and lots of doctors here in texas and they wouldn't treat me or even talk lyme, including my primary.
and heavens, don't even mention fibro -- one er doc told me to "keep your mouth shut and never mention that at a hospital"!!!
they said it doesn't exist in texas....took years to finally find one to treat lyme...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
dont for goodness sakes come to Canada as this whole country is in denial !
Posts: 234 | From BC Canada | Registered: Aug 2008
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Angelica
Unregistered
posted
The state of denial is everywhere at times.
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That's funny - not in a literal sense at all - but my wife is a member on another forum (unrelated to Lyme issues) and all Canadian members say Lyme is well recognized, treated easily, and cured.
Back to the original question, Lyme DOES NOT exist in Michigan if asked by any non-LLMD physicians / hospitals. None will mention it nor acknowledge you're even treating for it. They go blank both verbally and mentally. it's total B###SH@@ (pardon my French). But wow does CFS, Fibro and endless anxiety disorders exist here. They are so common that we all have them.
quote:Originally posted by Liz D: dont for goodness sakes come to Canada as this whole country is in denial !
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Angelica
Unregistered
posted
Check out canlyme.com/forum.
If the Canadian government cared to diagnose and treat Lyme better very ill patients would not be flying down here for help and sometimes having to use private airplanes because they are too ill for commercial plane travel.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
LD doesn't exist in Mississippi either. The head of infectious disease at a huge teaching hospital here said so.
When I told my regular GP that I was being treated for Chronic Lyme Disease he went blank and didn't know what to say.
Oh yea we also have lots of Fibro, Depression and Anxiety here too. And guess what they are willing to treat long term for all of these.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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He refused several times to give me Doxy. He said and I quote, "Let's say I would give you Doxy and you had a bad reaction to it. What would you do then?"
I would get excited about my lyme herx... Posts: 526 | From NJ | Registered: May 2007
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posted
i live in ny's hudson valley, which is apparently the most endemic spot on earth. i had several bites in a week's time, a rash, fever and then meningitis symptoms and three different docs (1 idsa) said i didn't have lyme. the id doc's report letter to my primary even states the tickbites and the rash that was probably due to a tick bite. but no lyme!! a even went to the er a couple of times over the nest few months for heart pain (from tbi's). the docs there knew my story yet saw nothing wrong.
so no, there are no states that are free from those who fail to acknowledge the tick borne diseases. i have a friend who right now has tbi's/meningitis symptoms/bell's palsy, and he has had it for a few weeks, still trying to get to a doctor who will tell him he has lyme(etc) and treat him. fortunately he just got an appt with a i.d. doc for this week. unfortunately, it is the same i.d. doc that convinced me i didn't have lyme last year. and this is even here in the hudson valley, where a vet gives a dog 6 weeks of abx even if lyme is suspected!
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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Angelica
Unregistered
posted
Yep the state of denial needs treatment before most lymies can get diagnosed and then treated.
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
What if you get Lyme in some endemic state & move to another state? Or if you get Lyme while on vacation somewhere?
I always felt I was on my own regarding treatment but it's very disconcerting to hear that this is official policy.
I never really checked into it since I don't have insurance & I like to use alternative medicine - anyway.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
"Southern California doesn't really have much lyme here! As a matter of fact lyme is rare and if you get it you probably got it when you went to Michigan...." As quoted by my very fired infectious disease doctor.
My primary treated me for 2 months last year when I first got a positive WB..but now..she won't treat me and doesn't want to hear about it again. Call me if you need a pap smear....
This situation is everywhere and so unnecessary. This is costing me bundles and I have really good health insurance. Too bad my health insurance group doesn't believe chronic lyme exists or I'd be covered!!
-------------------- The Lord is my strength and my song
CDC/Igenex- Positive IGG 31+/- 34+/- 41++ IGM 23-25+++ 31+ 34+/- 39+/- 41+ Posts: 50 | From San Diego | Registered: Nov 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yep, you got it in Michigan. Oh wait, it doesn't exist here. I'm sorry.
quote:Originally posted by bebfire: "Southern California doesn't really have much lyme here! As a matter of fact lyme is rare and if you get it you probably got it when you went to Michigan...." As quoted by my very fired infectious disease doctor.
My primary treated me for 2 months last year when I first got a positive WB..but now..she won't treat me and doesn't want to hear about it again. Call me if you need a pap smear....
This situation is everywhere and so unnecessary. This is costing me bundles and I have really good health insurance. Too bad my health insurance group doesn't believe chronic lyme exists or I'd be covered!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I'm pretty sure that it doesn't exist anywhere, it's all in my head...right????
All joking aside, it's so sad that the CDC would not count my positive lyme test as a "confirmed case" here in California or even in the San Diego County for that matter. They couldn't because I did not have a documented tick bite!
Dr *** here in San Diego has a waiting list of over 200+ people. Dr.***** has a waiting list of over 300 people and Dr. **** isn't taking anymore lyme patients right now.
This is a sad commentary of the ignorance and complacency of our nation regarding this epidemic.
-------------------- The Lord is my strength and my song
CDC/Igenex- Positive IGG 31+/- 34+/- 41++ IGM 23-25+++ 31+ 34+/- 39+/- 41+ Posts: 50 | From San Diego | Registered: Nov 2008
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lymielauren28
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Member # 13742
posted
Like Sutherngirl said - there's no Lyme in Missisippi. Amazing that we have now formed a support group with ten members that live within a twenty mile radius of each other even though it doesn't exist here
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
There's no Lyme in NC. Only Fibro, MS, CFIDs, the flu, or maybe it's all in your head.
Oh, you were on vacation or on business travel when you were bitten?
Must have been cured as you crossed the state line, because there's no Lyme in NC. Period.
In fact, since there's no Lyme in NC - maybe that's the reason they chased out one our best LLMDs, and made it impossible for him to practice there!
Wouldn't want people to associate NC with Lyme, now would we?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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"We don't have Lyme in TX. You have to live in an endemic area to have Lyme."
I wonder how come she never asked where else I had lived or if I had traveled in my life? Why do doctors assume no one is able to move about the country?
Oh, and she was a supposed ILADS member at one time. That was before she switched to the dark side.
Posts: 61 | From TX | Registered: Sep 2008
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TerryK
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Member # 8552
posted
We are an endemic State according to CDC but good luck getting a lyme test here.
If you do manage to get a test and it is CDC positive, it is a false positive. We don't know what you have, but it is not lyme because we don't have lyme here.
We have way above the national average for MS but we don't have lyme. We have lots of CFIDS, FMS etc.. but no lyme.
We don't know why your whole family is sick but it can't possibly be lyme because we don't have lyme here.
Years ago we had a doctor in our State who worked for Kaiser who had lyme and treated lyme patients. He was threatened and told to stop or he would lose his license. Lots of patients came to testify on his behalf to no avail because we don't have lyme.
I have to get on a plane to get to a doctor who will treat lyme. Very expensive and not an option for my siblings who are no doubt going to eventually die from complications of lyme.
The State's requirements for counting a case of lyme is stricter than the CDC!!!
We have a strain of Babesia named for the States on either side of us but no one here can get babesia because we don't have it here.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
One word about everytying covered up: CRIMINAL
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You asked: " Are there states in the US that refuse to treat people for Lyme?"
It's not so much the state government itself as the state's medical board putting pressure on doctors - and keep the truth from them.
Doctors in my state have lost their licenses or been limited to seeing patients only in an emergency care unit - no private practice.
The official word from the medical board is that "there is no lyme" in this state. Some ID doctors may have treated a rash or two but with 9 day's of a single abx and no testing of coinfections.
I have to wonder if the state legislators really knew about this if it would continue. But, then, they have been contacted by the lyme network and given all this information. So, maybe the legislators are involved.
To treat this would cost them. Not to costs them but not in the way that they consider important to the quarterly reports.
The insurance industry is also sitting pretty with both the legislators and doctors. That is what is really behind this although, I think the complexity of treatment is just too much for most doctors to take on. It is overwhelming at a time when HMOs are not about to give patients hour-long appointments.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
This is really crazy... I can't believe that it's all about insurance & money.
If people were getting treatment - the drug companies & insurance companies would be making money... They would just raise the premiums. We are so overcharged for drugs to begin with. In Mexico & other countries - the drugs are quite a bit cheaper.
I think it's something else... It has to be.
It's almost like prohibition... next thing you know, we'll all have to knock at the doctor's door & say "Swordfish" & pay $1000 a visit...
Just appalling. Someone e-mailed me & said that treatment was pretty open in AZ. I had a very hard time getting a diagnosis in NJ. My doctor is in CT & I can get treatment from him.... I was just wondering about other states. I know they have harassed doctors in Ct, though.
So, what do people do who, say, get Lyme while on vacation or visiting someone? If you go back to your state - they won't treat you? Is just awful...
So, if someone pokes your eye out in Louisiana, they won't treat it in Texas??? Or if you break you leg skiing in Colorado, you can't get medical assistance in NY? I don't think so... why is Lyme different?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
quote:Originally posted by sparkle7:
It's almost like prohibition... next thing you know, we'll all have to knock at the doctor's door & say "Swordfish" & pay $1000 a visit...
Great analogy!
And not too far from the truth now...
We find doctor's names through other patients, we don't post their names publicly, we don't give their names out to just anyone...
We know that many of our docs have been brought before state medical boards, some to lose their license for simply treating patients who need help.
And many of us pay quite a bit out of pocket to see our docs (worth every single penny) because they don't or can't accept insurance
due to all the intense investigations that often take place as a result of the insurance companies reporting them to the medical board - which could result in losing their livelihood and basically destroying their lives.
It's a tragedy. These are, in my opinion, some of the very best doctors and diagnosticians in the world.
Next time I see my LLMD, I'll be sure to say, "Swordfish" as I walk in the door.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Here in SF, doctors (IDs and rheumatologists) have tried to undiagnose me, after a definite tick bite and symptomatic history, a positive test and positive response to abx.
So I stand up to them in the office now and tell them it's unacceptable to stand down on a epidemic plague.
I don't think we should allow them to make these kinds of statements that lyme/co's aren't here. They are here, we are here, and that's that. Get used to it and start helping. I am also ready with a lot of brochures.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Seems like no matter what state you're in lyme doesn't exist. Course 5-10 yrs ago fibromyalgia and CFS didn't either.
Oh and don't forget if you're not a juvenile and you're not yet getting discounts at dinners at 4 o'clock but you don't look like you are molding, broken, bruised, beaten, or somehow otherwise clearly impared... nothing is EVER possibly wrong with you and it all must absolutely be in your head. plus don't forget you're lying about how and what you eat and how and when you do exercise. You're just lazy and attention or drug seeking.
-------------------- If I could only figure out myself I could conquer the world! Posts: 21 | From Northern California | Registered: May 2008
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posted
Lyme disease does not exist in WA state says the Health Department. Took years to diagnose my son. I was even told by a medical person that parents will make up illnesses for their children to gain attention for themselves!!!!!!!!!!!!!!!!!
With my son being treated, I then found a deer tick attached to my neck. I went to my Dr. and asked for a min. of three weeks of antibiotics She looked up Lyme Disease on her computer and gave me ONE doxacicline (SP?) pill...period.
Recently took my son to a pain clinic in desperation. The MD told him that his posture was bad and that he can't possibly have Lyme disease as he has already taken antibiotics.
The frustration of working with idiots is one of the hardest parts of this nightmare. Would love to hear how others deal with their anger......
Sorry to rant, hit a sore spot with me. :-)
Posts: 38 | From Seattle | Registered: Nov 2008
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