A debate over Lyme disease treatment
Thursday, June 24th, 2010
Pennsylvania lawmakers are debating a bill designed to educate state residents about the tick-borne illness Lyme disease. The state's largest doctors group says the proposal goes too far and endorses a controversial treatment.
Chronic Lyme Disease — or post-Lyme Syndrome — sometimes plagues patients for years after standard treatment with antibiotics.
Doctors debate whether the tick-borne bacteria that causes the disease is also responsible for problems that persist after an initial treatment with antibiotics.
Millersburg resident Clark Nicholson had joint aches, stabbing muscle pain and brain fog that made it difficult to read.
Nicholson: You'll end up going to this specialist, that specialist, this one after the other, and you'll treat symptom after symptom after symptom, and still not get to the root of the problem.
Nicholson says he's getting relief with aggressive and prolonged antibiotic treatment. But that approach is controversial.
Lyme Disease distribution in 2008. Click to enlarge. (Chart: CDC)
Officials with the Pennsylvania Medical Society oppose the legislation. Society Vice President Scot Chadwick is worried that it endorses long-term antibiotic therapy.
Chadwick: That's a dangerous precedent for the General Assembly to be getting into the business of statutorily protecting or endorsing individual treatment protocols. Every time the science changes and new treatments or pharmaceuticals are discovered, they are going to have to go back and amend the statute.
Chadwick says the bill pushes for prolonged antibiotic treatment just when many doctors are using those drugs more sparingly to prevent the creation of "superbugs" that are resistant to traditional treatment.
Bill supporters say the legislation only puts insurers and doctors on notice that prolonged treatment is a viable option.
Nicholson declined to name his doctor or other Lyme specialists who prescribe long-term antibiotic therapy, he says patients are protective of their providers, who have sometimes become targets for ridicule.
The number of Lyme disease cases in Pennsylvania has increased every year over the past five, and the illness is most prevalent in the southeastern part of the Commonwealth.
I myself attended the senate hearing for the lyme bill 1199 for Pennsylvania (lymeactionpa.com) and my story was used as an example. Not only have I been affected by my illness but so have my parents and husband. They have spent over $50,000 out of pocket just to get me well again because I was misdiagnosed for 15yrs. I saw every specialist you can think of and not one of them new gave me a proper diagnoses. I am finally starting to get my life back because I chose long-term antibiotic therapy. I don't think these doctors should be persacuted for helping us get well again. 14, 21, or 30 days antibiotics does not cut it, it is not 'curable'. Its mind boggling to me that they use long term antibiotics for acne and treat our pets for this disease immediately, but for us they take it so lightly. Yes, long term antibotics may not be a choice for everyone, but until we have another alternative to feeling well again, what would you Mr. Chadwick and others like us to do to get well again? I'd still be in a wheelchair and using a cane had I not gotten the proper treatment now, that I should of gotten 15yrs ago.If this was you going through this, spending thousands of dollars on your health and having to travel far just to get a doctor to help you get your life back, I'm pretty sure you'd be on the other side.
My Story http://www.lymeaway.wordpress.com
What is the argument against anti biotic treatment and do natural supplements help patients with advanced symptoms?
symptoms appear to be worse in the morning; any suggestions e.g. heating pads etc. Also will mole problems in a house exacerbate problems?
thank you
jerry
I've had the disease for 12 years and only found it 5 years ago… All that my doctors did is give me a month of antibiotics and told me I was better, and that any new symptoms are due to other problems, which is a lie. I wish they would do something like this for me because I'm sick of only treating the symptoms.
Plesae do not stay discouraged. Check out ILADS.org, NATCATLYME.org, CALDA.org, for great information and links. Ask for recommendations on a Lyme literate MD in your area. PA and NJ have a lot more doctors who are willing to treat Lyme than some states. Good luck and God bless.
I also consistently improve on long-term pulsed antibiotic treatment. For anyone who takes the trouble to look, there is NO reasonable explanation for the entrenched stance on Lyme taken by IDSA except money – their so-called definition of Lyme disease is an insurance executive's dream – what a funny coincidence!
Follow the money to insurers who benefit greatly from not having to acknowledge and treat a very large population of patients who (like me) are going to require long-term medication just to function.
Unfortunately the only bad thing about this is that it skews the lyme numbers negatively. We need as many Lyme infections reported as possible in order to get the attention, media coverage, and funding. That's the only way we'll ever get accurate tests, the attention of the medical community, and consistent treatment protocols that work!
Taunya, thank you for this article and for helping to raise awareness about the seriousness of Lyme disease.
Sal, it's true, and the persistent controversy over long-term abx treatment blows my mind.
Other serious diseases that are treated with long-term antibiotics are malaria and turberculosis. Numerous people don't catch the bacterial infection soon enough to be sufficiently treated with 30 days of doxycycline.
Laura, I have interviewed many trained Lyme doctors who support your statement about the necessity of long-term treatment.
Dennis, thanks for the chuckle. And I think you have a point there.
ILADS.org
Lyme-disease-research-database.com
Since longterm antibiotics are given for other health conditions, I think the real issue is unstated: that insurance companies don't want to pay for all the treatments and so have gotten the IDSA and the rest of the doctors to say anything so as not to have to diagnose and treat Lyme and co-infections, thus rendering the entire world full of more and more sick people. Is this the fate we want? I hardly think so. It's time to stand up and demand our right to live and be treated for infections that are extremely difficult and challenging to deal with. And to be told about them in the first place so we know to protect ourselves and pets. And then to figure out solutions to ridding the whole world of infected ticks. Come on, folks, let's stop being short-sighted – we have an epidemic conundrum to solve. Do we have brains or not? I think we do, so let's use them to solve the problem, not prolong it.
The topic of Lyme disease and other tick-borne diseases and the problems associated with obtaining correct diagnosis and treatment deserves an entire show dedicated to the subject. There is a true health crisis in our midst which is being mismanaged by mainstream medicine for way too many patients. For in-depth info about Lyme check ILADS.org.
Excellent points. Lie. Do what you have to. The solution starts with the bite and is very easy and what the doctors do not admit: when you are bitten by a tick, you are treated with doxycycline for 60 days. Accept the fact that tests are vague and inaccurate. Seeing a tick on you is that same as seeing the rash. DO NOT DELAY. Thousands would be spared the pain and suffering of chronic Lyme. Billions of dollars would be saved. Jobs would not be lost. And we'd be healthy after a tick bite instead of chronically and terminally (at this point) sick!
And what happens to someone who caught it early and had the 2 week treatment of doxy… but a month later still has migranes and nausea?… but the doctor says I'm all better. I was not like this before Lyme.
Dont want us to use antibiotics long term? Find something else, anything else that will work so my daughter will have some semblence of a life!
Millie, I feel your pain. My 16 year old daughter is in the same position.
1 and a half years out of school and no relief in site. We just keep trying new things and praying for at this point , even a partial cure.
keep the faith, good luck to you!
Go to a Lyme doctor and only a Lyme doctor even if it means you have to go out of state for treatment. It is worth it. That is what I did with my 11 year old daughter after she had had
lyme for a year and was to the point she could barely walk. Now after being on antibiotics for 3 1/2 months she is back to her old healthy self. At this point her only symptom remaining is frequent urination.
I thought superbugs could be created if you did not take all you pills. Would not the same thing happen if you were not prescribed enough!!!
I was left high and dry by the traditional medical community after 4 weeks of doxycycline. I was very symptomatic and disabled. I had to locate a lyme specialist and be treated with IV and IM antibiotics before I recovered (1 year!). The medical community at large treats very few cases of late stage lyme. Sadly many medical societies are more focused on a political win and controlling the protocol than getting patients well. I urge anyone who was told he or she was "cured" but still symptomatic to find another physician who specializes in treating lyme patients. You can recover.
People who have and fight this disease daily have no choice. If you don't try something you get sicker, that is not a choice at all! Doctors who disagree with long term treatment in my opinion should have their licensees taken for not helping their patients and letting them get worse. No one disagrees that the effects if not caught are very bad….so what about those of us who are at that point? Let us get sicker? Our state is #1 now, and people need help. This is a debilitating disease, and long term treatment is really helping so many people. If you knew how many you would be amazed, but the patients protect their doctors, because they are helping!
I've had Lyme for 4 years and was diagnosed 2 years ago. It was a nightmare until many months into my antibiotic treatment. Yes, it took months of treatment to get me better enough to be able to return to a 'normal' productive life. I've been on antibiotics for 2 years, and I'm finally pain-free. So, obviously, nobody can ever 'prove' that long-term antibiotics aren't helpful to chronic Lyme sufferers. They ARE. So doctors should be protected if they actually try to do the right thing for their patients.
I have been suffering from Chronic Lyme disease and am feeling much better. I used very little antibiotics. My main protocol is diflucan and Buhners herbal protocol. If you are suffering I highly recommend you check this out. Has saved my life!
John S.,
It's important to share what works as different patients will respond differently to different treatment protocols, however, I must stress how critical it is to get a lyme-literate doctor who understands the co-infections and can prescribe an effective treatment plan. THAT is the hardest thing to find.
Dan,
I agree. I live in an area with a high Lyme rate so I didn't have a problem finding an LLMD. I also had RMSF. My LLMD has me on diflucan and I chose to pursue Buhners herbal protocol. Saved my life as I'm cured!
They prescribe long-term antibiotics for ACNE. No doctor seems to have a problem with that. Yet they let patients suffer unspeakable pain with lyme and withhold antibiotics.
How does this make sense to anyone????
Excellent point Sal!
I'm using "Pulsed" antibiotic treatment in combination with other supplements and fringe treatments (Rife therapy) and am getting better. I think the antibiotic hangup is just an excuse by the doctors. They prescribe all kinds of crap that they don't understand fully (how many of them actually read the studies as opposed to the summarizations regarding the drugs they prescribe). Sometimes the treatment is worse than the disease (chemo anyone?). Why make sick people suffer because normal people don't finish their antibiotics and create "super bugs"? Hell, why are they so concerned about super bugs when they don't even understand the bugs out there right now. It's the medical dark ages.
There is no other choice than long-term antibiotic treatment for those of us who suffer from Chronic Lyme! I know it's the correct because I am getting better. Verrrry slowly, but getting better.
Sal says: June 24, 2010 at 3:49 pm – Hit on a good solution: Lie – Be dishonest with physicians.
This is one I have suggested to fellow Lyme Disease patients.
The technique is to have your doctor enter diagnosis of acne, and vaginitis (quite the leap of credulity with men). Respectively, these are the excuses for minocycline (Minocin) to eradicate active B.burdorferi, and metronidazol (Flagyl) for the dormant, cyst phase.
Under the pretenses, long term antibiotic prescriptions can be made for the survival of both the patient, and the doctor's ability to retain his or her practice.
Honesty is not entirely the best policy, when a benign subterfuge will do no harm.