Late last year, the Infectious Disease Society of America (IDSA), stated in no uncertain terms that long term chronic Lyme does not exist, meaning that in their opinion, Dr. Jones is practicing voodoo medicine and he must be stopped at all costs.
Dr. Jones is 77 years old. He really doesn’t need this. He could just walk away. In fact, the State of Connecticut told him just that: retire, give up your license, and we will drop the charges. Dr. Jones has decided to fight, for the kids, incurring the wrath of his licensing state and the loss of his reputation. He goes back before the board this Thursday, April 19, 2007.
The Infectious Disease Society of American (IDSA)
The State of Connecticut intends to call Dr. Eugene Shapiro of the Yale University School of Medicine. Dr. Shapiro helped shape the research that led the IDSA to say unequivocally that chronic Lyme disease does not exist.
They say the science is good. They say their guidelines are voluntary. They also state that members of the panel who wrote the guidelines have ties to Lyme product producers who will benefit from the findings. Some even have ties to Baxter vaccines, a pharmaceutical company developing a Lyme vaccine. It seems a Lyme vaccine is more valuable to the manufacturer when the effects of the disease are short term and can be cured in a majority of patients.
Connecticut Attorney General Richard Blumenthal thinks the IDSA’s science is good. He also believes that the science is incomplete, and that the IDSA may have held back the science that did not enhance its conclusion. If so, Blumenthal contends, the IDSA may have violated state antitrust laws.
The reason?
Although the guidelines are voluntary, health insurers are using the IDSA’s findings in their evidence of insurance to deny an ailment categorized as chronic Lyme disease. If the IDSA held back information that challenges their findings, patients in Connecticut have limited access to covered treatments, and that could be an antitrust violation.
The Big Picture
So then there’s Dr. Jones. He tells the IDSA they are wrong. He continues to treat patients with chronic Lyme disease. Nobody really cares all that much, except his patients, who see him as their last hope. Then these patients submit their bills to their insurance company. Sorry, they’re told, it’s not covered. Why?
Article comments
1 - Phillip Winn
I hate insurance companies almost as much as I'd hate life without insurance companies. Argh!
2 - Ina
Good article on Dr. Jones. Anyone who has met him wishes every doctor could be that smart and caring.
One quibble with what you have written: You say that Lyme rarely kills. How does anyone know? The question hasn't been seriously studied.
Lyme disease that kills is by definition Lyme that has gone undiagnosed for a long period of time. We have no idea how many people Lyme is killing, because these are people dying of "MS" and "parkinsons" and "early alzheimers" and "ALS" -- many of these diseases have seen startling increases in recent years and where know, geographical patterns overlap that of Lyme.
Lyme disease not only kills, but it kills in the most painful way, an unrecognized disease that causes immense suffering which could be prevented. If we only dealt more honestly with this disease.
Thanks for saying something about Dr. Jones. He is already a living saint; I believe there is a special place in Hell for those who are persecuting him.
3 - Nicole
I am 17 years old and have had chronic lyme for the last 5 years. I was misdiagnosed by several doctors and had every test under the sun done except the western blot. Until my mother's friend was diagnosed with chronic lyme so I got tested. I owe Dr. Jones my life. He helped me get better when no other doctors would. I couldn't even get out of bed and I was only 13 years old. He is a great man and it is a shame what these people are doing to him and all of the families that he has helped and will help in the future. Lyme is a serious disease and doctors need to realize that, join forces and treat lyme for the sake of their patients. They need to stand up to the insurance companies and then maybe things will change and people will slowly stop suffering. Insurance company's have put my family through hell just so they wouldn't have to pay for my treatment. We paid over $30,000 in one year of out-of pocket expenses because insurance companies wouldn't pay. I can now say I am in remission and off all of my antibiotics. Thanks Dr. Jones
4 - MTS
When you say lyme does not kill, we must not forget that lyme disease is often misdiagnosed as MS, ALS, Parkinsons, Alzheimers, which in all cases are eventually fatal. So, if those cases actually represent lyme disease cases that were misdiagnosed, we must say Lyme can kill.
Heart complications causing death have also been related to Lyme disease, so another question if the underlying Lyme disease was treated, would the cardiac condition have caused the death??
Lastly, How many patients are told by IDSA Quacks that "its all in their head" or 'see a shrink', but the pain and the suffering is real with an underlying bacterial infection. The patient knows it is real, but are not able to be heard by the IDSA and their buddies, and refusal to be seen and treated as a decent human often does not occur. Many of these patients at the ends of their ropes (not meant to be a pun) end their life. Again, we ask, how many deaths are attributed to suicide rather than lyme disease.
Wonder what happened in VA Tech....sure wish we could do a lyme autopsy of his brain!
5 - Desmond Kahn, Ph.D.
The IDSA claims that a brief course of antibiotics is all that is needed to cure Lyme disease. I am living proof that that idea is false. I was diagnosed with Lyme disease in 1989 and treated twice with two week courses of antibiotics. I had the bull's eye rash, the clear sign of Lyme disease. The following year I became very ill,as did my wife. Over the next couple of years I was so sick I couldn't work. If I stood up I was light-headed, along with mnay other symptoms typical of Lyme disease, as was my wife. We were finally diagnosed with chronic fatigue syndrome, for which there is little treatment available. Over the next fifteen years e saw at least four doctors. Finally, we heard of a doctor who had found that people diagnosed with chronic fatigue syndrome actually had Lyme disease, Dr. Joseph Bellesorte, practicing in Glen Mills, PA. He gave patients a month of antibiotic prior to drawing blood for a Western Blot test for Lyme. My wife came out overwhelmingly positive and I came out with a result he interpreted as positive, as has another doctor, Dr. Peter Fabulian of Kennet Square PA. Taking antibiotics and other medicines for months lead to a slow improvement for me and for my wife. Dr. Bellesorte told me that at one time he had thirty patients who met the strictest criteria for chronic fatigue syndrome and he told me that they all had Lyme disease. The IDSA is wrong. Visit the website of ILADS (International Lyme and Associated Diseases Society) for good information about Lyme.
6 - Wendy
My partner was diagnosed with MS and during our first appointment with the MS nurse, who reviewed the drug options with him, I couldn't help but notice the overwhelming "swag" littering her office. It was from various pharmaceutical companies; pictures of her drinking fruity beverages under their company banners, gifts that adorned her desk and shelves. My partner's MS drugs cost $1400 a month. His lyme treatment is $42 a month. I truly think that part of the lyme controversy is based on the almighty dollar. Why would a drug company invest millions of dollars into figuring out if MS is actually lyme disease (for some people)? Just ask their shareholders who are reaping the rewards from the costly drugs. You go Dr. Jones!
7 - Lisa
Dr. Jones saved my daughters life. Your article made me cry, again.... Thanks for putting it out there. Dr. Jones is on my mind and in my heart daily, and I look forward to the day that he will be praised and appreciated for all he has done for children with Lyme everwhere. Lets hope it can happen in his lifetime. In the meantime we all need to continue to help him in any way we can! best to all Lisa
8 - Bettyg, Iowa
Thank you for a well-done article on Dr. Charles Jones and the hell he and his lyme children/parents have been going thru these last 2 years. I liked the format you used in telling his story; made it great for us neuro lyme patients to read!
Lyme does kill and has killed hundreds of correctly diagnosed chronic lyme patients as well as the many others in the 300 OTHER illnesses MIMICKING lyme disease! I don't have at my finger tips the lyme memorial web site listing the names of over 100 folks who gave their lives to this deadly disease! Hopefully, someone else can show it on here when they respond!
Health insurance companies -- I've been fighting for 13 months to get paid my $4300 out of pocket expenses for seeing an out-of-state LLMD, LYME LITERATE MD, in Minn..NOT Mayo Clinic: for my 3 appts., 22 supplements they requested, and different body lab testings done in USA!
Iowa's Wellmark/BCBS says they won't pay "alternative therapy" or better known as holistic medicine! I'm not giving up.
I got Iowa's Insurance Commission, Regulating section involved, and their attorney and I have an on-going relationship of my complaints for their office to handle with wellmark!
It's really interesting as I called and talked to one of their customer service reps BEFORE I had to go out of state to see a LLMD since Iowa does NOT have any chronic lyme literate MDs in our ENTIRE state! So they had NOTHING to offer me for those registered to treat us chronic lymies!
I complied with every thing they asked! Didn't help at all; made things worse.
I even was in regular contact with 1 of their many VPs of Wellmark for 5 months; she couldn't get any more action than I did in a TIMELY MANNER! It took 8 months to finally get their DENIED BENEFIT claim forms back.
I also have had chronic lyme for 37 years; 34 years MISDIAGNOSED by 40-50 MDs/specialists over the years; and 3 years in lyme treatment!
It's been a witch hunt going on for Dr. Jones and other CHRONIC LLMDS in the USA; it's time for all this to STOP FOR GOOD! We need to keep these LLMDS who treat chronic lyme; remember; IDSA doesn't believe we exist but we do in the hundreds of thousands in the USA/internationally!
Keep up the good job on writing about Dr. Jones case! We really appreciate your skills in telling his/our chronic lyme stories! :)
9 - susan
Until some drs. and insurance people have a loved one who has lyme disease they probably don't care. Since it doesn't exist to them, they won't find out anyway. thank God that we found a dr. for our daughter who does believe and is helping. Insurance....I pray it will continue, or the alternative really scares me.
10 - pam
I have been fighting the good fight since Aug. 1989. 23 surgeries to include a brain artery rupture. Finally saw a Lyme Specialist and IGENEX Lab found bands for two types of Borrelia, Babesia WA1, Babesia Microti. Now on IV Rocephin, IV Zithromycin, IV Flagyl, oral mephron, actigal, and pain meds. Glyconutrients seem to help also. A big thank you to all the folks that are fighting the good fight against this horrible "NON" Chronic disease! If the infectious disease doctors would read the literature on this three stage disease they would realize it does exist. Gulf War Syndrom, MS, ALS, Lupus, to name a few probably all have LYME DISEASE to thank for the long hard road. I like having ME again and it is no thanks to the doctors and medical folks that know nothing of our plight. When the BALL drops we will find that the few Lyme Literate Folks were right all along. Love to you all. Pam
11 - pam
Just found out our Lyme Specialists are closing their clinic because Dr. Martz's health is going down hill fast. This great clinic has helped so many of us and hope someone out there can give us hope as where to get ongoing treatment. Thank you, Pam Mitchell P.S. This is the clinic in Colorado Springs
12 - Rick Vassar
I will spread the word.
13 - steve from CT
Living in Central Connecticut, I can tell you folks that the whole state is plagued with Lyme disease! I actually came down with it in May/June of last year...I had the traditional bullseye right on my right cheek! I thought that it may have been a spider bite...so I let it go by for a week...it didn't...so I got checked out. other than that initial symptom, I had no other tell-tale signs of lyme disease...no joint aching, nausea, or fatigue. My father came down with it at the same time...about two weeks before I did...he didnt get checked out until my test came back positive. by this time, lyme disease had set in with my father...he WAS fatigued, he WAS aching, and so on. I'm also 22, my dad 51...he could have been more symptomatic because I have a younger, stronger immune system. Point of the story...if you live in the northeast, be cautious...The sooner you find out you have lyme disease...the less likely it is that multiple symptoms set in. while out in the woods wear long socks+tuck your pantlegs into your socks! (you will look like a lameass, but you wont be hurting later!) =)
14 - Jessica
the insurance company doesnt want to pay...the insurance company finds a reason not to pay it's all very convenient but at the same time, the IDSA cannot blatantly lie, they must have evidence. but what evidence? and why hasn't anyone checked it? these people suffering from chronic lyme disease can't all be hypochondriacs, something is wrong. if not chronic lyme disease...then what? the people have a right to demand fair treatment. but what IS fair?
15 - Ruvy in Jerusalem
"the IDSA cannot blatantly lie"
Why not, Jessica? Why can't they not blatantly lie. Cops do it all the time in court, politicians do it all the time in public. Academics do it all the time on campus. Men lie to women about their looks, women lie to men about how sexy they are. Why should the IDSA not blatantly lie?
As Rick has so intelligently pointed out, no health insurer likes to get stuck forever paying out to treat an expensive disease. There is serious money involved here, Jessica, and wherever there is serious money, there is someone eager not to pay it. It's a rule of business practice - perhaps the most basic one for those who wish to stay in business.
That ain't pretty, but it is the nasty truth.
16 - Doug Hunter
Sounds psychosomatic to me. There are also tons of people who truly believe they're tortured by 'evil spirits'. I bet insurance companies won't pay for the alternative care for that either.
I don't want my insurance company paying for unneccesary care for those who have disorders that can't be explained by science.
17 - Doug Hunter
Secondly, your camplaints are completely illogical. If insurance companies believed they could remotely reduce the chances of for all of the following disorders alleged to come from Lyme they would order the treatment in a heartbeat. Here's the fantasy list so far.
Lyme causes:
1. Rheumatoid arthritis
2. Cardiovascular problems
3. Migraines
4. Diminished cognitive ability
5. Multiple Sclerosis
6. Parkinson's
7. Early alzheimers
8. ALS (Lou Gehrig's disease)
9. Suicide
10. Chronic Fatigue Syndrome
11. Gulf War Syndrome?
12. Lupus
One in this little fantasy support group say up to 300 diseases are misdiagnosed Lyme, so this is just a short list.
If your going to bitch at least get your logic a bit in line. Insurance companies would want to treat Lyme if it were the true cause of the other disorders, Pharmaceutical companies wouldn't. (except the pharmaceutical company that came up with the best Lyme drug)
Finally, go see a shrink you lunatics!
18 - Joe
Actually Mr. Doug Hunter, get your logic in line. Insurance companies dont want to pay for treatment so smokers quit smoking so they dont get heart disease or respiratory problems, not to mention cancer, so why would they want to treat lyme disease before preventing other more serious and fatal diseases?
Insurance companies want to pay the least amount of money they have to immediately, even if the long term expense is more. I guess they just hope you end up dying on your own without having to get their benefits.
Immediate gratification is not the best resultant; insurance companies are businesses who want your money, not want to pay out, (or am i living in a different country?).
19 - Joe
By the way, if you ever look up the symptoms of various diseases you will note that almost all diseases have similar if not the same symptoms. TESTS are required to see the underlying factor to your health problems, this is why we all cant be doctors based upon our understanding of symptoms Mr. Hunter. AIDS has the same physical symptomology as the flu. Go to college and get an education Mr. Hunter.
20 - pam
Hunter you are living under a rock. Eric Traub engineered ticks for the US government. Read Lab 257. Chronic Lyme exists!! The government made a big boo boo. Now they must hide it. If you were so smart you would know about the three stages or morphs that Borrellia goes through. Look it up. Even the infectious disease docs know about it.
21 - Philip Ohler
Dr. Jones treated our 3 year old son after our General Doctor refused to put him on antibiotics. My wife and I believe Dr. Jones is a Saint and we support him in his fight. We just received a letter today from him saying he needs to raise $200K for his legal defense. Please help him in his fight. Contact him directly for more information.
Checks should be made out to:
Pullman & Comley Trust Account for Dr. Charles Jones
Send to:
Elliot B. Pollack
C/O Pulman & Comley, LLC
90 State House Square
Hartford, CT 06103-3702
22 - elaine
My son suffered from daily 24/7 migraines; we were at our wits end after enduring 15+ different medications for pain management, I read about Dr. Jones. As we had spent some time in Eastern Long Island, I was concerned about the possibility of Lyme. Well, he had testing done for Lyme and Igenex (Palo Alto California)reported it as positive; he began Lyme treatment, but I as a nurse was concerned about the long term antibiotic use. To make a long story short, I had him retested at two labs in the Northeast and he had a spinal tap - guess what - they were negative. Upon additional testing we found that he had a fluid-filled cyst in his spinal cord, likely the result of an auto accident. A course of steroids and anti-inflammatories brought the headaches under substantial control and now they are only ocassional. I learned in my investigation that lyme testing at Igenex frequently comes up positive (who has ownership/investor interest in this place, I wonder??) So, I would caution anyone in long term treatment to consider the possibility that your symptomes may not be lyme and the results might be bogus.
23 - Sue McDermott
I don't think anyone should respond to DOUG HUNTER. He clearly works for an insurance company. Anything he says will be a lie. Furthermore, he isn't intelligent enough to make his own point. He said someone had their logic wrong, and then went on to make a list that did not substantiate his claim. Therefore, he accused someone of being illogical, when in fact, he himself lacks the ability to logical. ELAINE - I feel concerned about your son. If your son still suffers occasional migraines, maybe he's not cured? I don't know any healthy children who have migraines ever. Since he had a positive Lyme test, maybe the cyst was caused from complications of Lyme? The disease causes the body to have trouble healing itself, which might be why he got a cyst after a car accident. The rate of tests that are falsely negative are substantially lower than the rate of tests that are falsely positive. You might want to reconsider your conclusions.