Chronic Lyme disease treatment could face insurance battle

Many Lyme disease patients rejoiced last month when the General Assembly unanimously passed a bill specifying that physicians could diagnose the controversial chronic Lyme disease and prescribe equally contentious long-term antibiotics to treat the tick-borne illness without fear of reprisal.

[Sick and tired]

Why is when ANY progress is made the insurance companies look like they will mess it up...!!!..??

[Nonsense]

Some scummy doctor diagnosed my Aunt with Lyme and put her on 30 days of VERY expensive treatment that could only be given in HIS clinic and was not covered by insurance. He didn't even do blood tests for Lyme. Her only symptoms? Confusion and memory loss. Her neighbor encouraged her to visit this "great doctor who would help her out."

After the 30 days of treatment were up, she had not improved. He put her on another 30 days of very expensive IV antibiotic treatment. Again no improvement.

Eventually, she went to a neurologist who discovered she had early onset Alzheimers - not Lyme at all! The doctor was furious she'd spent all her money on treatment that was for a disease she did not have.

If he did a proper medical history on her he would have discovered it ran in her family and she just had it earlier than most of her other family members had (and during her confused mental state, could not put the connection together). But no, he wanted to pump those dangerous heavy-duty IV needle antibiotics into her to get his MONEY'S WORTH!

These "Lyme clinics" are huge money making businesses. We were very suspect of this doctor and his woo-woo herbs he was selling as well as the IV treatment. I'm surprised there wasn't a dead voodoo chicken hanging from the front door. He took advantage of a woman in a confused mental state, which he swore was due to Lyme disease but was in reality due to early onset Alzheimer's.

These doctors often don't do any sort of blood test, they just take people saying they have "fatigue" or "memory loss" and make a diagnosis with no testing! They have waiting rooms full of patients who say "Oh I have fatigue" (WHO DOESN'T THESE DAYS, I ASK?) And pumps every one of them full of antibiotics for 30 days.

And we wonder why people are dying of bacteria resistant to all antibiotics? Because of idiot money-making "clinics" like this who waste anti-biotics on people who DON'T EVEN HAVE LYME. Most of them probably have arthritis or other commons conditiosn. This RUINS IT FOR THE ONES WHO REALLY DO HAVE LYME AND REALLY DO NEED ANTIBIOTICS!

This bill needs to include proper testing protocols before this antibiotics are given to every Joe Blow who walks in off the street with the sniffles.

[Still Suffering]

I am 38 years old and have been suffering with Lyme for over 10 years. When I contracted it, I knew I had it, I had all the classic symptoms. However, since my blood tests kept showing up with false negative, I was never treated.(To this day there is not a single blood test that is even 90% accurate, that insurance companies acknowledge). I was finally diagnosed and treated for Lyme 3 years ago. I have been on and off antibiotics for years (out of pocket) and from all the costs associated with finding a diagnosis, my health insurance premium significantly increased ($3,500. per month for just me). I had no choice but to cancel it.
Due to the fatigue, chronic brain fog, pain and neurological issues, I have been unable to work for the past 3 years. I had to move back home with my mom and dad, and I was once again DENIED disibility coverage with the State of CT!
What kind of a life do I have to look forward to?
If only I was treated when this first happened, I most likely would not be in this position right now.
This is a truly debilitating disease. Cancer would be so much easier to handle.
I can only pray that the insurance companies will start recognizing the severity of this disease and start treating it immediately before more people end up like me.

[BettyG]

nonsense,

i'm very sorry for everything your aunt went thru.

fyi, my late sis-in-law died at age 40, yes 40, of EARLY onset Alzheimer's disease 16 yrs. ago. she showed symptoms for 8-14 years.

mayo clinic, minn. did an autopsy taking 4-5 months on her brain showing plagues/tangles.

HOWEVER, now i do think she had LYME disease which was never considered or tested for!

she/my brother farmed with dad for 10 years where she walked beans, picked up field rocks, harvested, and mowed grass constantly on the acreage. she was exposed constantly to TICKS carrying lyme/co-infections meaning OTHER disease the ticks carry.

i tried to talk to her once about her severe memory loss; she never opened up & talked.

drs. treated her all that time for SEVERE DEPRESSION!

so i feel your aunt COULD be in the same category as my sis-in-law.

did she garden alot, mow grass, walk in the woods, have PETS CARRYING TICKS IN WITH THEM?

STILLSUFFERING,
join www.lymenet.org flash discussion board, go to SUPPORT area, post about your being DENIED SSDI. we'll help you ok!

that's another subject we go thru! i went thru 5 years of hell to be approved for ssdi on my 2nd claim.

DDS fights US on: lyme, chronic fatigue, and fibromyalgia pain since they are INVISIBLE TO THE NAKED EYE!

you can't see what is going inside our 24/7 "construction zones"!

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

GOV. JODI RELL,
please do what is right; SIGN our lyme disease bill for long-term antibiotics from our chronic lyme literate mds, llmds!

WE WANT QUALITY OF LIFE BACK; REMISSION; AND TO BE TREATED EQUALLY AS AIDS, HIV, AND CANCER PATIENTS ARE TREATED! thank you!:)

bettyg,
iowa lyme activist

[Julie]

If the insurance companies would read the bill it does not legislate or mandate treatment, it allows treating physcians in CT to use their clinical judgment to diagnose and treat Lyme disease. The FDA and the CDC both state that Lyme is a clinical diagnosis, using patient history,signs and symptoms, history of tick exposure or tick bite (everyone in CT), with or without testing as supportive data

How can you not diagnose clinically when there is no test that is accurate to test for Lyme? The testing being used now and by the IDSA guidelines (and talk about mandate)was meant for surveillance purposes only.

So a physician who is diagnosing based on tests may actually be contributing to the chronic nature of this disease. The tests are poor, CT has co-infected ticks...babesia, anaplasmosis, bartonella.

It is not just Lyme that is making the residents of CT sick...yet this is the silent epidemic. Our CT DPH does not have one stitch of information going out to the public. They have failed at their responsibitlity to protect the public. Matt Cartter MD, Head of the Lyme Program has been in charge since 1987, our legislators need to perform a job performance review and investigation.

What is the cost to tax payers for prosecuting these doctors who treat clinically and help their patients? The witchhunt money could be used to prevent and educate the people of CT on Lyme disease.

When the CT DPH states funding is lacking we need to gather the amount spent on prosecuting these doctors. What a waste of money for the taxpayers.

[former res]

Still Suffering wrote:

I am 38 years old and have been suffering with Lyme for over 10 years. When I contracted it, I knew I had it, I had all the classic symptoms. However, since my blood tests kept showing up with false negative, I was never treated.(To this day there is not a single blood test that is even 90% accurate, that insurance companies acknowledge). I was finally diagnosed and treated for Lyme 3 years ago. I have been on and off antibiotics for years (out of pocket) and from all the costs associated with finding a diagnosis, my health insurance premium significantly increased ($3,500. per month for just me). I had no choice but to cancel it.
Due to the fatigue, chronic brain fog, pain and neurological issues, I have been unable to work for the past 3 years. I had to move back home with my mom and dad, and I was once again DENIED disibility coverage with the State of CT!
What kind of a life do I have to look forward to?
If only I was treated when this first happened, I most likely would not be in this position right now.
This is a truly debilitating disease. Cancer would be so much easier to handle.
I can only pray that the insurance companies will start recognizing the severity of this disease and start treating it immediately before more people end up like me.

Have you heard of this film that is coming out?

http://www.underourskin.com/

[Kris Newby]

For a great video clip of the dangers that Lyme-treating physicians face in CT, check out our video clips on "Physicians Under Attack" and "Patients Abandoned" here: http://www.underourskin.com/watch_excerpt.htm...

After 4 years of hard work, our documentary on Lyme disease is finally opening in theaters. This film will save lives! Check out our new map to find a theater near you.
http://www.underourskin.com/

Kris, Senior Producer, UNDER OUR SKIN

[Sharon Miller]

I"am 47yrs old and 3 months ago diagnosed with Lyme disease. I went 2 yrs with out a diagnosis and 8 Specialist a mountain of doctor bills. Ironically they all questioned lyme disease but not one would diagnose and threat me. The symptoms were clearly lyme symptoms which I was not aware of at the time, but have scence educated myself. I was tested for lyme disease 4 times the blood test were different each time. the Elisa would be positive and the western blot either negative or with only a few bands present. Or the Elisa false negative. Now I have not only lyme arthritis but cognitive impairment as well left in a state that is unemployable. I cannot afford the IV treatment that I need I live with chronic pain. My life as I new it was taken away. This all comes down to the all mighty dollar. The CDC should be ashamed of their selves. My concern is for other people. What about our children,grandchildren, husbands and our neighbors. My son and husband are effected this disease infects the whole family. I believe that If we do not address this issue and helping the American people to be aware of the dangers of this disease. Then we are going to be in for a harsh awaking. Early diagnosis and treatment are the key to people being able to live healthy productive lives. Which in turn saves the tax payer money. God Bless

[Twice Shy]

Are you kidding me? Here in America the tax-paying, insurance-buying citizens are being denied treatment because those charged with making treatment guidelines have been bought?

So now we have cheap and ineffective treatment and people are being allowed to die.

For anyone who thinks that this won't affect them, keep this in mind when there's a cure for cancer...oh wait. It costs a lot. So...maybe it's not the "recommended" treatment.

What about all of those cardiac stents and pace makers... will they be replaced with the "new and improved" intervention of "take two asprin and call me in the morning"?

Lyme will not be the last illness to be handled this way.

SOMEONE has got to take the profit out of lettng people die without treatment. This young nation is about to meet its own undoing if this sort of thing keeps up.

My heart goes out to those touched by this, and my efforts will continue to reach those who haven't been as of yet. It's only a matter of time until the two groups merge.

[Michael Springfield MA]

Studies supporting persistent Lyme Disease (there are over 100 studies saying the same thing):

1: Ann Med. 1999 Jun;31(3):225-32.Links Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis. Oksi J, Marjamäki M, Nikoskelainen J, Viljanen MK.(Excerpt: The response to retreatment was considered good in nine patients. We conclude that the treatment of Lyme borreliosis with appropriate antibiotics for even more than 3 months may not always eradicate the spirochete."

2: Rheumatol Int. 1996;16(3):125-32.Links Intracellular persistence of Borrelia burgdorferi in human synovial cells. Girschick HJ, Huppertz HI, Rüssmann H, Krenn V, Karch H.(Exerpt: Treatment with ceftriaxone eradicated extracellular Borrelia burgdorferi, but spirochetes were reisolated after lysis of the synovial cells. Borrelia burgdorferi persisted inside synovial cells for at least 8 weeks. These data suggested that Borrelia burgdorferi might be able to persist within resident joint cells in vivo."

3: 1: Infection. 1996 Sep-Oct;24(5):347-53. Links Borrelia burgdorferi DNA in the urine of treated patients with chronic Lyme disease symptoms. A PCR study of 97 cases. Bayer ME, Zhang L, Bayer MH. Fox Chase Cancer Center, Philadelphia, PA 19111, USA. "Excerpt Of the 97 patients, 72 (74.2%) were found with positive PCR and the rest with negative PCR. The 62 healthy volunteers were PCR negative. It is proposed that a sizeable group of patients diagnosed on clinical grounds as having chronic Lyme disease may still excrete Borrelia DNA, and may do so in spite of intensive antibiotic treatment."

4: Clin Infect Dis. 1997 Jul;25 Suppl 1:S52-6. Related Articles, Links Tetracycline therapy for chronic Lyme disease. Donta ST.(Exerpt: Two hundred seventy-seven patients with chronic Lyme disease were treated with tetracycline for 1 to 11 months. history of longer duration of symptoms or antibiotic treatment was associated with longer treatment times to achieve improvement and cure. These results support the use of longer courses of treatment in the management of patients with chronic Lyme disease. "

[Dumbanswers]

Save on Insurance and Shoot the Damn Deers. They are all over the place, where I live and fencing is too freaking expensive.

Shoot them all.

[BettyG]

michael,

on what you posted here, the MOST CURRENT IS 1999; 10 years ago!! alot has happened since then.

dr. brian fallon published findings last year or was it 2 yrs. ago already that it proved LONG-TERM ANTIBIOTICS DID SHOW AN IMPROVEMENT TO CHRONIC LYME PATIENTS.

i've lost my comprehension skills to be able to find that for you, but it was published in the journal all you idsa drs. use!!

39.5 yrs. chronic lyme; 34.5 yrs. MISDIAGNOSD BY 40-50 DRS!! UNACCEPTABLE!

bettyg,
iowa lyme activist

Michael Springfield MA wrote:

Studies supporting persistent Lyme Disease (there are over 100 studies saying the same thing):

1: Ann Med. 1999 Jun;31(3):225-32.Links Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis.

Oksi J, Marjamäki M, Nikoskelainen J, Viljanen MK.

(Excerpt: The response to retreatment was considered good in nine patients.

We conclude that the treatment of Lyme borreliosis with appropriate antibiotics for even more than 3 months may not always eradicate the spirochete."

2: Rheumatol Int. 1996;16(3):125-32.Links Intracellular persistence of Borrelia burgdorferi in human synovial cells.

Girschick HJ, Huppertz HI, Rüssmann H, Krenn V, Karch H.

(Exerpt: Treatment with ceftriaxone eradicated extracellular Borrelia burgdorferi, but spirochetes were reisolated after lysis of the synovial cells.

Borrelia burgdorferi persisted inside synovial cells for at least 8 weeks.

These data suggested that Borrelia burgdorferi might be able to persist within resident joint cells in vivo."

3: 1: Infection. 1996 Sep-Oct;24(5):347-53.

Links Borrelia burgdorferi DNA in the urine of treated patients with chronic Lyme disease symptoms.

A PCR study of 97 cases.

Bayer ME, Zhang L, Bayer MH. Fox Chase Cancer Center, Philadelphia, PA 19111, USA.

"Excerpt Of the 97 patients, 72 (74.2%) were found with positive PCR and the rest with negative PCR.

The 62 healthy volunteers were PCR negative.

It is proposed that a sizeable group of patients diagnosed on clinical grounds as having chronic Lyme disease may still excrete Borrelia DNA, and may do so in spite of intensive antibiotic treatment."

4: Clin Infect Dis. 1997 Jul;25 Suppl 1:S52-6.

Related Articles, Links Tetracycline therapy for chronic Lyme disease. Donta ST.

(Exerpt: Two hundred seventy-seven patients with chronic Lyme disease were treated with tetracycline for 1 to 11 months.

history of longer duration of symptoms or antibiotic treatment was associated with longer treatment times to achieve improvement and cure.

These results support the use of longer courses of treatment in the management of patients with chronic Lyme disease. "

[Family with Chronic Lyme]

My whole family suffers from Chronic Lyme.My husband is 53 and bedridden and legally blind,he has been on IV treatment for almost 8 years.When the doctors stopped treating him because of insurance ,his heart stopped twice in one year.Finally found a Dr.infectious disease in Morristown and drive again one hour and half every month or two to get his check ups.He is doing much better ,but may never walk again,or survive, because of the insurance companies resistance to treat him when he really needed it.Thank God I found this new Dr.My other family members had all 56 days of Iv rocephin,and my self have been treated since 1989,with two IV treatments one 28 days second 56 days.My husband is in diapers and is on IV twice a day now.He would have died if I didn't find a compassionate Dr. in NJ.Pa s___k! for Lyme Dr.'s,funny two because Sen Arlen Spector has Lyme and never said a thing to the public,wonder why? Politics maybe.So then he get diagnosed with Lymphoma and is better,?Both my parents died from Lyme at ages 60,63.Both my Aunt and Uncle suffer from it as do my four adult children.I know of a five year old who died slipped into a coma the family had an autopsy done and sure enough it damaged her heart, as it did mine.That same family went on to get checked for Lyme and they all had positive test results and had treatment.The one sister of the five year old who died is having many complications from it.I could go on and on but this disease has NO CURE,if it did I would know I was born with it and had over 15 life threatening surgerys.Stomach rupture,tumor on my heart and lungs removed,all from Lyme. But Dr.'s here in Pa still poo poo it.Oh well here's to good medicine,if you look long and hard and survive to tell your tale.

[Susan W]

Hello, from Nevada,(yes we have lyme-infected ticks here too, especially in our recreational areas of Mt. Charleston and Red Rock Canyon). However, we lack ANY lyme-literate doctors. We have NO ILADS-trained doctors in Southern Nevada, where I am Chair of a local lyme-disease support group, Nevada Lyme Disease United Coalition.

About the insurers, well they are going to have to get out of bed with the CDC/IDSA and start administering appropriate lyme disease treatment and research - because the "28-day and go away" IV treatment does not work. Even if you are "gifted" with a bonus 28 days. And this nonsense about dying if you have IV rocephin or rifampin for longer than this two 28-day cycles is just that - NONSENSE. My husband was on IV rocephin for 5 months straight (a thrill to the insurance company - who was very happy to take the monthly premium out of his paycheck, but not so happy to be called into service) and is alive to talk about it, however, because the insurance company has "reconsidered" the concept of this treatment as "experimental and investigational" - so they ended IV treatment, hence he is struggling with oral antibiotics and anti-protozoal (mepron) medications.

And to anyone of you who take the idea of Chronic Lyme Disease lightly, do two things; 1)be very careful when enjoying nature, because it could happen to you - then you would know and, 2)keep your opinions to yourself because you do not know what you are talking about.

Let us all pray EVERY state be as brave and forceful and truthful as Connecticut.

H.R. 1179 passed the House, now get ahold of your Senators. And include that 5 million in research money for lyme-disease over the next 5 years is woefully inadequate - even fibromyalgia (where there is no positive or negative determinative test (there is for lyme)) got 12 million. And AIDS has five sources of federal funding, one of wich is the Ryan White Foundation, very honorable no doubt - but 800+ BILLION - come on. Plus four more.

Lyme disease is the AIDS of the 1980's and it needs attention. Get active, get busy, make your Senators listen.

Thank you,
Susan Ward, Nevada Lyme Disease United Coalition

[Susan W]

I am so sorry to read of your troubles, but you are surrounded by some very good doctors, try to get an appointment with Dr. Richard Horowitz - he is in New York and I am told is brilliant.
__________

Sharon Miller wrote:

I"am 47yrs old and 3 months ago diagnosed with Lyme disease. I went 2 yrs with out a diagnosis and 8 Specialist a mountain of doctor bills. Ironically they all questioned lyme disease but not one would diagnose and threat me. The symptoms were clearly lyme symptoms which I was not aware of at the time, but have scence educated myself. I was tested for lyme disease 4 times the blood test were different each time. the Elisa would be positive and the western blot either negative or with only a few bands present. Or the Elisa false negative. Now I have not only lyme arthritis but cognitive impairment as well left in a state that is unemployable. I cannot afford the IV treatment that I need I live with chronic pain. My life as I new it was taken away. This all comes down to the all mighty dollar. The CDC should be ashamed of their selves. My concern is for other people. What about our children,grandchildren, husbands and our neighbors. My son and husband are effected this disease infects the whole family. I believe that If we do not address this issue and helping the American people to be aware of the dangers of this disease. Then we are going to be in for a harsh awaking. Early diagnosis and treatment are the key to people being able to live healthy productive lives. Which in turn saves the tax payer money. God Bless

[Susan W]

To Betty G:

You have a very good patient advocate in Iowa, her name is Judith Weeg, she is President of Lyme Disease United Coalition - get ahold of her - "Under our Skin" is playing all over your state - I am Chair of her Nevada Affiliate, NVLDUC and we are trying very hard to bring the film here to Las Vegas through "Open Eye" productions. Good Luck.

Susan Ward, NVLDUC
__________

BettyG wrote:

nonsense,
i'm very sorry for everything your aunt went thru.
fyi, my late sis-in-law died at age 40, yes 40, of EARLY onset Alzheimer's disease 16 yrs. ago. she showed symptoms for 8-14 years.
mayo clinic, minn. did an autopsy taking 4-5 months on her brain showing plagues/tangles.
HOWEVER, now i do think she had LYME disease which was never considered or tested for!
she/my brother farmed with dad for 10 years where she walked beans, picked up field rocks, harvested, and mowed grass constantly on the acreage. she was exposed constantly to TICKS carrying lyme/co-infections meaning OTHER disease the ticks carry.
i tried to talk to her once about her severe memory loss; she never opened up & talked.
drs. treated her all that time for SEVERE DEPRESSION!
so i feel your aunt COULD be in the same category as my sis-in-law.
did she garden alot, mow grass, walk in the woods, have PETS CARRYING TICKS IN WITH THEM?
STILLSUFFERING,
join www.lymenet.org flash discussion board, go to SUPPORT area, post about your being DENIED SSDI. we'll help you ok!
that's another subject we go thru! i went thru 5 years of hell to be approved for ssdi on my 2nd claim.
DDS fights US on: lyme, chronic fatigue, and fibromyalgia pain since they are INVISIBLE TO THE NAKED EYE!
you can't see what is going inside our 24/7 "construction zones"!
i've had chronic lyme 39.5 yrs; 34.5 yrs. MISDIAGNOSED BY 40-50 DRS! UNACCEPTABLE!
GOV. JODI RELL,
please do what is right; SIGN our lyme disease bill for long-term antibiotics from our chronic lyme literate mds, llmds!
WE WANT QUALITY OF LIFE BACK; REMISSION; AND TO BE TREATED EQUALLY AS AIDS, HIV, AND CANCER PATIENTS ARE TREATED! thank you!:)
bettyg,
iowa lyme activist

[Andre]

First, God Bless Governor Rell and the bravest bunch of State Legislators I have ever witnessed. You all have done so well here for the people of Connecticut. You have done your duty to your constituency and done a great service to the suffers of this disease. I am so proud of my elected people. How many people around the country can say that? I talked to almost all of the offices of these brave people and guess what, they listened and heard our plight. We are real people, your neighbors, friends, loved ones and we are sick and need help. I know we may never get that help from the ones that we would expect to get it from, our two great health institutions in Connecticut. I wish it were so, but it isn't. I doubt we will ever have a sympathetic ear at either one of these places. That is something they will have to live with as this horrible epidemic unfolds. In the mean time, go get tested if you feel you are sick, go get treated.Try and be as well as you can and try to forgive the people who have hurt us so much.But pray that someone comes to their senses and fires them too.

[Miles]

A great resource to wade through all the confusion about Lyme is http://www.lyme-disease-research-database.com . It is ran by a journalist that has Lyme. She makes no claims. She interviews Doctors and patients to compile a database of the whole Lyme phenomenon. You can listen to the interviews.

[guest]

Just being recently diagnosed, I was shocked and saddened by all of the "unsure that this really exists" type of views and all of the insurance companies predetermined ideas. This is horrible. I am only 30 years old and I feel 65 on most mornings when I awake to get out of bed. I avoid my stairs as often as possible, and I am literally begging and stalking my doctor to "get the ball rolling" on some type of treatment.

My family physician is sending me to an infectious disease specialist in St Louis Missouri and I can only pray that this doctor believes that this is a real disease and will treat me accordingly, and that my insurance will pay. I can barely afford to even do this as I am still paying for my "carpal tunnel, osteoarthritis, depression, anxiety, and just plain it's in your head" diagnoses.

Before a diagnosis, I was under the impression that Lyme disease is a week or so of flu-like symptoms with a small rash that is cured with a week or 2 of antibiotic.......I had no idea that this is a much later, chronic, life-threatening, debilitating, marriage-ruining, more disgusting form of Lyme that I would end up with just simply because I was not educated on the fact and that I never even knew I had been infected, despite the fact that I had pulled several ticks from my bleeding skin in the years before.

[BRB]

Dr. H in NY will bury you with prescriptions and supplements. He is brilliant. He is making a TON of money at our expense.
Signed FORMER patient.