Lyme disease care under fire

In the battle over how best to treat Lyme disease, a new settlement between Attorney General Richard Blumenthal and a major medical group might seem to offer at least a little hope of expanded treatment for ...

[Christina]

The numbers are way higher than that. The pharmacy I worked in saw way more than the towns number alone with six other pharmacies in town.

[Sandy Berenbaum LCSW]

Thank you, Mr. Miller, for your fair and balanced reporting of this issue. And thank you, News-Times, for showing the integrity to support Mr. Miller's journalistic efforts. Not all of the newspapers in CT have been fair in reporting the results of AG Blumenthal's investigation, and I am proud of the News-Times for having done so.
As a psychotherapist who sees children and adults suffering from the effects of chronic, persistent, Lyme disease and coinfections, I have seen the damage that is done to the patients and their families by untreated or undertreated Lyme. I have also seen them recover, and be able to resume work and school, when treated efficaciously, comprehensively, by their courageous doctors, who do not give up on them, or put them on paliative care, when they fail to get better in 30 days of abx. I have seen them resume full lives, after months or years of anti-microbial treatment, by doctors who understand chronic Lyme.
By denying the magnitude of the Attorney General's findings (http://www.ct.gov/ag/cwp/view .asp?A=2795&Q=414284), the IDSA is announcing that they are not accepting responsibility for the corruption in the process found by the Attorney General. By not acknowledging the points made by the AG, they are failing the patients once again, and sustaining the suspicion held by many that they, in fact, do have something to hide.
The attorney general emphasized that his findings were about the PROCESS of developing the guidelines, and this PROCESS was seriously flawed. I urge the readers to check out the text of the AG's press release on the website. It will clearly show who, in fact, can be believed.
Sandy Berenbaum, LCSW, BCD
Southbury, CT and Brewster, NY

[Randy]

Per Shapiro (Shapiro said the IDSA agreed to the settlement simply to end any attempt by Blumenthal to take the case to court.)
Dr Shapiro, Why would you turn tail and run if you are correct. Why don't you beg to go to court so you can prove to the whole world that you are the correct party.
The link below will explain why you can't go to court. One of our members wrote a time line of the IDSA work. Click on the link and go to IDSA time line of corruption.
After reading the IDSA time line of corruption ask your self if Lyme is cured in 21 days. Also,Read the papers from both camps that show treatment failure along with documents that prove the current testing will miss about %85 of cases at the web site www.lymecryme.com
If you know the test is about as good as a toss of a coin, then how do you prove that lyme is killed off??
www.lymecryme.com

[Dottie L Heffron]

This document called "The Dearborn Conference - How the Test Was Spun" is all the documentation one will need to prove that Yale, Allen Steere, et al, have committed Scientific Fraud.
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http://www.lymecryme.com
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It is free to download and free to sign the petition written by Camp C, a group of concerned citizens.
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Instead of disclosing their financial and vested interests, the IDSA chose to revamp their staunch 2006 guidelines. If they stood fast beside their own guidelines, why redo them? If they had nothing to protect, then why did they not just simply disclose this information? Even though they have not had one omission of guilt spring from their camp, revamping the guidelines says it all.
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Now it is very well known, the scientific fraud and intent to do harm they have deployed on us. As victims of their abuse, we can now seek retribution.
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[Randy]

$20,000 reward to prove lyme cure Go to www.lymecryme.com for more info

[Pura Vida]

The Newtimes article says:

The Lyme disease bacteria Borrellia burgdorferi can create a chronic illness that needs long-term treatment with antibiotics...

The F.D.A. and the drug companies want people to be sick. It helps to keep people depending drugs, which in turn helps to keep revenue to the drug companies which run the F.D.A.

All you have to do is an internet research and you will be amazed. Our food, drugs, drinks, etc are designed to make us fat and sick so that we buy drug which do not cure us, but rather only temporary relieves the symptons.

THERE HAS TO BE A NATURAL CURE.

[Betsy]

While I don't know where I find myself in this debate, I do know that beyond this there is the question of the long-term after effects of Lyme Disease. The medical community first focused on the most obvious, arthritis, and it wasn't until the mid part of this decade that the NIH commissioned a study on the neurolgical complications of Lyme. It was found that 20% of the Lyme disease sufferers who did not receive early treatment developed these neurological complications which range from headaches to memory loss, etc. I would like as much focus to be placed on those of us who have long-term after effects that are only now treated on a symptom by symptom basis. I have migraines, cluster headaches, daily chronic headaches, ice pick headaches and fibromyalgia. I do, however, recommend an anit-inflammatory diet--thats seems to help as does a concerted effort to get off of or not go on a lot of medications.

[Phyllis Mervine - CALDA]

Your article quotes Dr. Eugene Shapiro as saying that having stricter guidelines means doctors who follow the IDSA protocols see patients fewer times. That's because IDSA’s treatment protocol has a 50% failure rate. No intelligent patient with any resources would continue such a self-defeating course when alternatives are available.

What IDSA says, in effect, is that persistent infection can't be proven to cause symptoms. In early March, the American Society of Microbiology published research that proved that one month of treatment with the IV drug ceftriaxone did not kill all the Lyme spirochetes in infected mice. This is the most recent research to prove persistence of infection.

A few weeks later, IDSA President Donald Poretz sent a letter to members of Congress, saying, "[T]here are no convincing published scientific data that support the existence of chronic Lyme disease." We wonder what type of evidence the IDSA would accept, if any.

According to previous IDSA statements, equally meaningless are positive Lyme antibody tests plus symptoms; positive Lyme bacteria DNA plus symptoms; post-treatment symptoms; positive brain SPECT scans plus symptoms; tick bite in a known endemic area followed by symptoms.

In case anyone has missed the message, there is no justification for extended antibiotic treatment in the IDSA belief system. Although numerous studies have shown benefit of longer and/or more aggressive treatments, IDSA's position is that “enough is enough.� They oppose treating for longer than two weeks, even when people improve on treatment and relapse when treatment is stopped. Where would people with cancer be today if we treated them like that?

CALDA and other patient advocacy groups tell people to look for a doctor who belongs to the International Lyme and Associated Diseases Society (www.ilads.org), whose guidelines allow clinical discretion and are flexible. We also refer patients to their local online support group, which in Connecticut may be found at http://health.groups.yahoo.com/group/connecti...

Phyllis Mervine
California Lyme Disease Association
www.lymedisease.org

[Phyllis Mervine - CALDA]

HOW TO FIND YOUR OWN STATE ONLINE SUPPORT GROUP

If you have been diagnosed with Lyme or one of the Lyme “mimics” like fibromyalgia or chronic fatigue, and think you might have Lyme, go to the website and apply to join.

They are part of the Yahoo health groups system. All are moderated, mostly by local patient advocates in the state. All are set up the same way with the state name and lyme run together as one word:
http://health.groups.yahoo.com/group/STATENAM...
e.g. newyorklyme, except for South Carolina which has a hyphen between the statename and lyme, e.g. southcarolina-lyme.

I hope you can figure this out if the site cuts off the end of the URL.

Phyllis Mervine
CALDA

[Ann]

If Chronic Lyme Disease dies not exist, what is it that we all have following initial Lyme Disease symptoms?

If Lyme can be treated with a few weeks of antibiotics, why do people get sick just months after they take the antibiotics?

I was treated with 2 weeks of IV antibiotics after 4 weeks of oral antibiotics and could not shake a 104 fever - doctors were stumped....why did specific antibiotic therapy help 20 years later?

If no study needs to be done, how can we get Lyme disease diagnosed quickly and without question so people do not have to suffer for years before a probably diagnosis?

Those of us who have had their lives turned upside down because of Chronic Lyme Disease, would love to know the answers to these questions and why they feel better on long term antibiotics?

Why is it that people that die with the diagnosis of ALS, MS, Parkinson's, as well as Fibromyalgia find out via autopsy that they are diseased with Lyme?

Why do some people diagnosed with the above illnesses, recover with treatment of antibiotics?

So many unanswered questions. Let's answer these questions first before we keep people from the assistance that is helping them with their health and quality of life.

Please.

[REH]

I am a 40 year old mother of two children. I was diagnosed with Lyme disease in November after many years of searching for what could be wrong with me. My children also carry the disease. We are in the process of trying to figure out the best course of treatment for them. I tested negative 3 times for Lyme. The tests are completely unreliable and off-base. why is it that a high powered microscope could detect the spirochetes in my blood but the diagnostic tests used by the majority of doctors in this country are only 40% reliable? The only conclusion we are left to believe is that it is all about money. No one wants to take responsibility for a disease that is out of control...and becoming a major epidemic.

No one could ever understand how horrible and tormenting this could be. It affects every part of you life. There was a time when I was hallucinating and unable to care for my family. There are days at my sickest point that I don't even remember. Imagine having a horrible bug that you can feel moving around in your body and you know what it is and how much damage it can cause but you can't find any doctor that knows enough about it to make the diagnosis. And even if they have heard of it, they don't want to treat you for fear of going against the guidelines and getting in trouble.

I had to go to Michigan for a diagnosis. I did have a doctor treat me with one month of doxycycline here in Illinois. Scientific evidence aside...the one month of doxycycline would not have been enough medicine to get this bacteria out of my little toe.

Thanks to the help of my doctor in Michigan, I have regained some of my strength and am able to care for my children. I don't have much time for anything else, but it was a goal that I prayed for and have done everything in my power to get back on my feet for them.

None of us want to take antibiotics. We have no other choice at this point. If we don't, it will continue to spread and cause permanent damage.

The guidlines need to be revamped because they are failing us.

How many more of us need to get sick before they open their eyes and realize how wrong they are?

[Maria Alovert]

For an example of a very flawed double-blind study often cited by the IDSA guidelines authors to back up their allegation that long-term antibiotics don't help chronic lyme patients, see this analysis (by a firm that specializes in analyzing medical studies for hidden bias for use in court cases):
http://www.verimresearch.com/Verim%20Research...
In brief: the often-cited Klempner study took a very small number of patients who had already had treatment failures with antibiotics (meaning they were difficult cases for whom antibiotics don't work well), then treated them for only 30 days with an IV antibiotic and for only two months with oral doxycycline, and then did a subjective symptom survey of the patients and other subjects who received placebo instead of antibiotics.
The study's authors then proclaimed that because the survey results didn't differ between the treated patients and those who received placebo, this proves that long-term antibiotics don't do anything for Lyme.
In reality, the study didn't really treat it's patients with anything remotely resembling 'long-term antibiotics', and picked an oral antibiotic that frequently fails to show results in those patients who experience antibiotic treatment failures. There were many other flaws- the Verim Research analysis summarizes some of them on page 6 and 7 of the PDF, which are a good introduction to the entire issue of Lyme treatment controversy.
Chronic Lyme patients who are lucky enough to have access to a lyme-literate doctor are often treated with 6 months to many years of antibiotics. For those for whom simple treatment doesn't work (and for some people it's specifically doxycycline or amoxycillin that don't work), doctors may progress to using combinations of antibiotics, or longer treatment with IV. Doxycycline is a first step for many patients but when it doesn't work more expensive antibiotics, and combinations of antibiotics, are usually prescribed by knowledgeable doctors such as members of International Lyme and Associated Diseases Society (www.ilads.org).
The Klempner study was designed with many built-in conditions that seem designed to predispose it's small sample size of subjects to treatment failure, and the IDSA guidelines authors seemed to base their guidelines literature review on similar studies, hand-picked to prove their extreme position.
When the 2006 guidelines were announced, the ILADS president produced a statement that there were something like 1800 good studies on Lyme treatment in existence, but that the IDSA guidelines authors had hand-picked the worst 400 to prove their point.

[Sannew]

Very good article. I hope that we continue to see the follow-up to this denial by Shapiro et al that they conspired to exclude the doctors who are on the front lines, and who KNOW that this is not a simple disease that goes away with 14-21 days of antibiotics. I had to travel to NY from CT to be treated by an ILADS doctor after my family doctor kept telling me that I had the flu in July. Only after I fortunately developed a rash (at the same time, I became sick enough to have heart troubles and not be able to walk unassisted, unbelievable to a 20-year old athlete!) did I go back, and they offered me 21 days of (too) low dose antibiotics and no more. It's crazy. And would you believe that same family doctor is not offering prophylactic doxy doses for those bitten by deer ticks < 72 hrs ago?! Lyme causes strokes, heart problems, joint problems, etc.... and I can't for the life of me figure out why there aren't any R&D efforts going on to get a more reliable test, let alone a treatment! There is tons of money to be made here - over 50% of the deer ticks in this part of the state are infected.... and as we encroach on their habitat even more, more people are going to get sick. Attention Pharma!!!!!!!!!!

[KathleenM]

I always thought that health care professionals and researchers went into the field to benefit others. Having personally experienced the roadblocks to proper research and care has astounded me. I have become increasingly debilitated by lyme disease which had gone undiagnosed for years until recently. What would these individuals that say that chronic lyme disease doesn not exist have those of us do who are barely holding on to our ability to function day to day? What will happen as increasingly large numbers of people put more of a strain on the health care and disability systems when careful diagnosis and treatment might have avoided this result? This battle is unnecessary and appears to be fostered by hubris and greed. I wonder how those in the IDSA would respond if they were going through the prolonged and uncertain struggle that we must face. The scientific literature details the ability of the bacteria to evade antibiotics. Why aren't those in the IDSA citing these studies?

[Brenda Jenkins]

If Mr. Blumenthal feels (and has sued) the IDSA of conflicts of interest, why then would he let them (ISDA) police themselves,continue to set the guidelines, and determine who will be chosen to do so?

Now does that make sense?

[Newtowner]

I was "Diagnosed" with lyme disease once. My doctor was great. I went in November a few years ago, described my symptoms and assumed he would do a test. Instead he said "doing a test would take a while and may not be completely accurate. With your symptoms and time time of year with many ticks, I'm going to put you on the anti-biotics right away"

Started the antibiotics and a snort time later the tiredness, headaches and joint pain went away.

[Mike Riley]

What do you want from an Attorney General that uses his office for showboating and maeuvering for higher office. This particular issue owes it's high profile because Blumenthal's wife had chronic complications from Lyme. Now he want's to direct the nation's primier Lyme experts on how to treat this condition. Yikes!, we're in for trouble when the politicos mess with health. Another bad example along with Gov. Rell's medling with MRSA in schools. Bad advice and bad advice.

[Mike Riley]

You can't treat something that doesn't exist. There's no viable organism to treat. Antibiotics are not a treatment for an immune response. Really.

[Mike Riley]

Believe this and you'll believe anything. 50% failure rate. Do you have any data to support this made up figure?

Phyllis Mervine - CALDA wrote:

Your article quotes Dr. Eugene Shapiro as saying that having stricter guidelines means doctors who follow the IDSA protocols see patients fewer times. That's because IDSA's treatment protocol has a 50% failure rate. No intelligent patient with any resources would continue such a self-defeating course when alternatives are available.
What IDSA says, in effect, is that persistent infection can't be proven to cause symptoms. In early March, the American Society of Microbiology published research that proved that one month of treatment with the IV drug ceftriaxone did not kill all the Lyme spirochetes in infected mice. This is the most recent research to prove persistence of infection.
A few weeks later, IDSA President Donald Poretz sent a letter to members of Congress, saying, "[T]here are no convincing published scientific data that support the existence of chronic Lyme disease." We wonder what type of evidence the IDSA would accept, if any.
According to previous IDSA statements, equally meaningless are positive Lyme antibody tests plus symptoms; positive Lyme bacteria DNA plus symptoms; post-treatment symptoms; positive brain SPECT scans plus symptoms; tick bite in a known endemic area followed by symptoms.
In case anyone has missed the message, there is no justification for extended antibiotic treatment in the IDSA belief system. Although numerous studies have shown benefit of longer and/or more aggressive treatments, IDSA's position is that “enough is enough.� They oppose treating for longer than two weeks, even when people improve on treatment and relapse when treatment is stopped. Where would people with cancer be today if we treated them like that?
CALDA and other patient advocacy groups tell people to look for a doctor who belongs to the International Lyme and Associated Diseases Society (www.ilads.org), whose guidelines allow clinical discretion and are flexible. We also refer patients to their local online support group, which in Connecticut may be found at http://health.groups.yahoo.com/group/connecti...
Phyllis Mervine
California Lyme Disease Association
www.lymedisease.org

[Phyllis Mervine - CALDA]

Mike, let me guess - you don't have chronic Lyme that is responsive to long-term antibiotics, like many responders here. And, you are not aware of the successful treatment protocol advocated by the Road Back Foundation (roadback.org) which uses low-dose antibiotics for arthritic diseases.

There are a number of published studies showing a high failure rate of the IDSA recommended treatments.

If you were chronically ill and relapsed after your antibiotics were discontinued, would YOU just resign yourself to a life of pain and disability?

Really, Mike.

Patients want antibiotics because antibiotics work. Why don't you study some of the research rather than just parrot the IDSA propaganda you read on the internet?

Shadick (1999) 69 of 184 previously treated patients (37%) reported relapse.

Treib (1998) After 4.2 years, >50% of 44 treated patients with clinical signs of neuroborreliosis and specific intrathecal antibody production were symptomatic.

Logigian (1990) After 6 months, 10 of 27 (37%)patients treated relapsed or failed treatment. 17 (63%) improved, 6 (22 percent) improved, then relapsed, 4 (15%) had no response.

Pfister (1991) 33 patients with neuroborreliosis treated. After a mean of 8.1 months, 10 of 27 (37%)were symptomatic and Borrelia persisted in the CSF of one patient.

Shadick (1994) 10 of the 38 (26%)patients …relapsed within 1 year of treatment and had had repeated antibiotic treatment.

Valesova (1996) At 36 months, 10 of 26 (38%)had relapsed or progressed: complete response or marked improvement in 19, relapse in 6, and new symptoms in 4.

Asch (1994) 3.2 years after initial treatment: 28% relapsed with major organ involvement; 18% were reinfected. Persistent symptoms of arthralgia, arthritis, cardiac or neurologic involvement, were present in 114 (53%) patients.