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. Full Story
First Prev
of 2
Next Last
RAJONES

East Lansing, MI

#23 Sep 24, 2009
Agreed that are and will always be people that take advantage of people. There are people that cheat auto insurance companies but that does not mean ALL the people do.

The problem is there is no one reliable test for late stage lyme. The current two tier testing needs to be changed. The ELISA can miss 70 out of 100 of people that actually do have lyme. Western Blot is better but still not perfect.
There are people that are sero negative but positive on spinal tap.

And there is evidence that a number of people with Alzheimers have a infectious cause. In England they did PCR on 18 brains of Alzheimers patients vs controls. They found lyme spirochetes in all 18 and none in controls.
That does not mean all of it is caused from lyme but some are.
That quack Dr. did add fuel for the opposition. That women may have had neural lyme but used a herbal IV (Snake oil) and ripped here off. Maybe she would have responded to real IV abs. So don't assume the neurologist is correct. He made his diagnosis without much either. Some fuzzy MRIs with non specific lesions + memory issues and viola - Alzheimers! No cure.

Bug resistance is a problem created by many more conditions than lyme treatments.

For every story like that there are many more with a positive outcome.

Better tests are needed, the politics and insurance companies funding studies has to stop.
Nonsense wrote:
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.
ATTNl

United States

#24 Sep 25, 2009
Sick and tired wrote:
Why is when ANY progress is made the insurance companies look like they will mess it up...!!!..??
EH HEH HEM
LYME DISEASE COMES FROM EAST HADDAM CONNETICUT
IT IS OR HAS ORIGINS FROM MARTHAS VINEYARD DR BOLLARD MARTHAS VINEYARDS OWN LOCAL KOOK SOOTH SAYER HAS STATED ON MANY OCAASIONS THAT MARTHAS VINEYARD IS INFESTED WITH THIS DISEASE BECAUSE PEOPLE UP ISLAND DONT CLEAN UP AFTER THEIR ANIMALS
KAT KRAP DOG S H I T PEOPLE ON ISLAND HAVE POLICIES ON ANIMALS S H I T FIRST ASK QUESTIONS LATER LATER AS IN LET THE NEIGHBORS CLEEN IT UP ITS THE STATES PROBLEM ONCE IT LEAVES MY ANIMALS ASS HOLE "NOT MY PROBLEM," WELCOME TO EAST HADDAM CT 06423 AND MARTHAS VINEYARD MASSACHUSETTS
LYME DISEASE COMES FROM ANIMAL FECES WAKE UP PEOPLE
GO LOOK AT ALL THE DOG POOP KAT PO PO ALL OVER EAST HADDAM I SAY THE INSURANCE COMPANIES NEED TO TARGET DIRTY TOWNS LIKE EAST HADDAM AND MARTHAS VINEYARD AND JAC UP ALL HOME OWNERS INSURANCE POLICIES PAY PAY PAY THEN MAYBE LYME DISEASE WILL GO AWAY THEN WE CAN CONCENTRATE ON DODD AND HIS AIG PARAMOUR BENEFACTOR DODD IS A PIMPS PIMP
EAST HADDAM CONNETICUT IS A PIMPER'S PARADISE
WOULD YOU WANT TO HAVE A KAT BOX WITH SMELLY KAT
WE WE AND KAT TURD IN YUR HOUSE HELL NO!!!
CATS ARE THE MOST FILTHIEST DIRTY DAM ANIMALS ON THE FACE OF THE EARTH LIKIN THEIR ASS OF S H I T ON THE KITCHEN FLOOR PEOPLE THINKS THAT FUNNY
sheesh ersatz vet

Morgantown, WV

#25 Sep 25, 2009
BRB wrote:
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.
Most of the MDs I know don't make a penny off the meds they prescribe. Most also send you to a lab for blood tests. Their income is derived from procedures they actually perform themselves. Examinations, surgeries, etc.

No one has mentioned the role the CDC has played in the process of the medical profession missing the boat with regards to Lyme disease. The CDC mandates treatment that the docs have to adhere to and the insurance companies have used that information as a tool to get out of coverage.

"Treatment" is limited to two weeks of doxycycline by CDC standards.

If the illness is caught very very very early two weeks of doxy might cut it. However, how often does that happen?

Someone mentioned co-infections. I think it is common for people to have one, two, or three tick borne illnesses. Some of these aren't responsive to tetracyclines. There is also a really good chance that there are more related orgnasims that have not been discovered yet.

Diagnosis needs to include a combination of things like the lab tests (which have much room for improvement) as well as clinical signs and patient history.

One problem with lab testing is that it can take a while for what they're testing for to show up in the blood. Or it may be missed by tests that come after it has faded. Lyme is an intracellular organism. Living inside the host's cells protects them from the host's immune system.

The bottom line is the CDC needs to wake up to reality and force insurance companies to follow suit.

In my own experience treating dogs with tick borne diseases a short course of two weeks treatment is only temporarily effective and they'll relapse in a few days to months following the end of therapy.

I have also had a few dogs with co-infections have lab data deteriorate after cessation of drug therapy only to see it return to normal levels during chronic antibiotic therapy. I have had one patient require over a year on doxycycline to keep his anemia from returning.
sheesh ersatz vet

Morgantown, WV

#26 Sep 25, 2009
ATTNl wrote:
<quoted text>EH HEH HEM
Clearly the most accurate portion of your comment.
Lymey in Michigan

Southfield, MI

#28 Oct 1, 2009
We have very similar stories. Just wanted to let you know you are not alone. Hang in there. I have had lyme since 1987 but was not diagnosed until 1997 - even the 9 specialists I saw at Mayo Clinic were too afraid to diagnose it. A local doctor finally treated me with IV rocephin and I improved drmatically but sill suffer from chronic symptoms. I am on Ceftin and Zithromax all of the time as well as meds for heart arrythmia, arthritis, nausesa, etc. After years of trying to reinvent myself in order to keep working, I am applying for disability - let's hope Michigan is better than Connecticut. Hang in there!
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.
Clare

United States

#30 Oct 5, 2009
I had the classic rash associated with Lyme disease and had fever, aches etc. My Lyme test came back negative too. My doctor put me on antibiotics for 1 month and said I probably didn't have it long enough to develop the antibodies in my blood. A few weeks later I was tested again for Lyme. Still negative; BUT I tested positive for a tick disease called Babesiosis. There are numerous tick diseases. Just google tick diseases, and you'll see. Luckily I had the rash and went right to the doctor. Sometimes you don't get it or the rash may be on your back! Anyway, get blood tests for other tick diseases and not just the Lyme disease.
To Guest -

AOL

#32 Oct 13, 2010
SO sorry to hear of your plight, make ceertain to get ahold of a doctor that lyme literate and preferrabli ILAADS trained.
Susan, NVLDUC
guest wrote:
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.
Julie

Ashburn, VA

#33 Jan 23, 2014
Help.my husband has been suffering with lyme for over 5 yrs. Untreated, undiagnosed until a yr. Ago with coinfections, flu symptoms, joint pain, neurological symptoms, left. Unable to work and no disability since he's a teacher. We have a hearing w insurance and wondered if there were any publications or case studies to argue so they can pay for dolphin...thanks

Tell me when this thread is updated:

Subscribe Now Add to my Tracker
First Prev
of 2
Next Last

Add your comments below

Characters left: 4000

Please note by submitting this form you acknowledge that you have read the Terms of Service and the comment you are posting is in compliance with such terms. Be polite. Inappropriate posts may be removed by the moderator. Send us your feedback.

Uncasville Discussions

Title Updated Last By Comments
Eastbound Jesus At Arch Street Tavern Wed ijnokp 1
Foxwoods, Mohegan Sun Report Drop In Slot Reven... Nov 18 revman 1
Thames River Apartments: 'We're just barely liv... Nov 18 annekb1111 3
Mohegan Sun seeking new casino in northern Conn... Nov '14 revman 1
Review: Handbag Cuties & More Oct '14 stephanie 8
Slot Revenues Down In September At Foxwoods, Mo... Oct '14 revman 1
Norwich Taxi Oct '14 Unsatisified Client 1
Uncasville Dating
Find my Match
More from around the web

Uncasville People Search

Addresses and phone numbers for FREE

Uncasville News, Events & Info

Click for news, events and info in Uncasville

Personal Finance

Mortgages [ See current mortgage rates ]

NFL Latest News

Updated 5:02 pm PST