posted
These Medical Board cases bring the Lyme controversy into the radar screen, and, while it is there, it is important how we Lyme patients handle it.
I think, for one thing, the Lyme advocacy community also needs to report some cases to the Medical boards, if there are very legitimate cases. Anyone who has later been proven (by labs or other objective proof) to have Lyme or other tick-borne disease, but was sent away or refused treatment by an earlier MD, should file a complaint with the Medical Board of Registration in their state. Especially if the delay was harmful. Failure to diagnose and failure to treat are possible grounds, and the contemptuous or abusive treatment patients suffer might also be mentioned.
In the meantime, Lyme patients need to understand that doctors who are "helping" by doing things like prescribing over the phone, or without objective reasons, are sometimes hurting the cause. And doctors who are beng conservative about the diagnosis aren't necessarily evil, they are sometimes just trying to keep their licenses.
These charges before Medical Boards may be an opportunity to get more education out there about what the standard of care really is, and sharpen its definition.
Do we want LLMD's who are outlaw heroes? They won't last long, and neither will our health. We need LLMD's who are respectful of the requirements of their licenses who work as much as possible within the system, which is the only way to change it.
I can sympathize with many "ducks," even though they have hurt me and my family. At the Boston hearing, someone complained that they took their child to an MD with a cough and the MD didn't "even consider Lyme." This is the type of ridiculous statement that affects our credibility. Was the family doctor in question supposed to do long-term antibiotics because the child had a cough, without any other grounds for suspecting Lyme?
If physicians don't exhaustively investigate OTHER reasons for symptoms such as fatigue and trouble concentrating, then they are not being responsible. Our doctor starts the abx, and then also does the differential diagnosis. This is even with positive Western Blots.
Yes, there are two standards of care, and yes, the diagnosis is clinical, but that isn't a blank check to put people on months of antibiotics. Other drugs like Mepron have some pretty serious side effects as well.
My child is almost as sick from the after-effects of antibiotics as she was from the disease. Putting patients on antibiotics is a serious decision, with health risks for the patient and public health implications as well. I don't necessarily regret her treatment, but she is still healing from it.
I personally cannot go two days without my antibiotics, I become very sick. It might seem paradoxical that I am saying MD's need to be more careful with these prescriptions, when I could become handicapped very quickly without. But it is the imprudence of some of these practices that threatens us in the longer run. I am really, really afraid that antibiotics will not be available to us, sometime soon.
Some people in the Lyme community need to be more open to diversity of medical opinions, because the solution lies in synthesizing them. Even Steere has some good things to say about autoimmunity, which aren't that different from certain well-known LLMD's. I woldn't go to him, obviously, but he, like Dr. L, P, D also recognizes that there is a reason some of us get sick, and others don't.
It looks like the war is going to take place, for now, at the Medical Boards. Lyme advocates can get their point of view across both in the defense of the two Dr. J's, but also by reporting MD's who have not followed standards of care in the other direction.
In the meantime, since we act like there is a war, and polarize every debate into "good and evil," we end up getting exactly that: a war. I hope that everyone keeps some perspective when they respond to these charges for the Dr. J's. Each side believes they are right, and the people who are filing complaints may truly believe they are helping prevent harm.
I just wish the tenor of this fight could change, so that more resources, including funds, could go into researching better treatment, even a cure. Acting angry and desperate is not going to get us anywhere. Maybe there is a way to hire political campaign professionals for advice.
One other thing: somehow demonstrating that failure to treat raises medical expenses and hurts society in some way is more effective than lengthy personal anecdotes. There is plenty of evidence that the long search for a diagnosis costs a lot of money. Insurance companies should look at the cost of all those consultations and tests.
For years I was an administrator in a large shelter for the homeless. We did not get money from the state because anyone cared about the homeless. We got money because we were able to show that the shelter was a much more cost-effective way to handle homelessness, for the state, as compared to prisons, hospitals and clinics.
The expectation that politicians and institutions CARE is one of the weaknesses of the Lyme advocacy movement. Things like money, liability, and medical licensure requirements are what count. It's a cold hard world out there.
posted
Very well said, couldn't have said it better myself. I had posted the fact that Dr. J was up on charges last night and everyone was supporting him without looking at the cases themselves. I won't say more because my post will just be deleted. You have excellent points and I'd like them posted on the post about Dr. J's charges.
[ 18. December 2005, 01:26 PM: Message edited by: NCLymie ]
Posts: 75 | From NC | Registered: Dec 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Lydie, This is excellant.
Before I had Lyme, I heard about the dangers of long term antibiotics. After I was diagnosed, I found LymeNet and read for myself the problems that people were having.
They couldn't find a doctor who knew how to diagnose Lyme. They couldn't find a lab that could run a reliable test. They couldn't find anyone willing to treat for Lyme longterm.
Once they knew it was Lyme, the longterm antibiotics caused havoc to their bodies, wrecking their gut function and depressing the immune system.
People with AIDS now have all kinds of community support. But they worked hard for it. People with Lyme have depression, mental health problems, and very often children to support.
I don't have the energy to attend a rally or go on a march. I don't have the organizational skills to plan a rally! Once Lyme messes with your head, you're lucky to be able to plan well enough to get dinner on the table.
Even registering a complaint with the Medical Board takes a level of intelligence and planning that many Lymies have lost. Once doctors know that you have a history of registering complaints or suing, they are very leery of taking you on as a patient. They know if they make any mistake, that you'll do the same to them.
I don't know what the answer is. But I know that people like you, who can figure out the problem, are valuable to our cause.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
I complained about the Infectious disease dr I went to that told me that I would already be dead if I had Lyme, that I should have a rash if I had Lyme, that the spinal tap is the only true test for Lyme and that my symptoms were only caused by allergies, sleep apnea, rosacea and anxiety.
He wanted to test me for Aids and Syphilis also, though he said there was really no point in doing so because of my history. ???
OH, he wanted me tested for tuberculosis too. Hahahahaha.
He was extremely rude to me as soon as I mentioned I thought I might have Lyme. He took about 2 seconds to look at my 6 page list of symptoms (never made it past pg 1). When he told me to go wait in the waiting room after he was done, the nurse asked me when I needed a return visit - I said I probably wasn't seeing him again (he never said anything about a follow-up).
One nurse overheard me and told the dr. NOt realizing wha twas going on, I was called back to his office where he berated me within hearing of the waiting room and his entire staff.
He basically said things such as: I was wasting his time when other patients 'really' needed him, that I was making everything up, etc, etc.
We ended up in a yelling fight - right there in front of my 2 yr old that I had to bring because they refused to see me, as a new patient, at a time where I could get a babysitter (even after I explained my situation).
My son was really upset and that's when I realized that there was nothing I could say or do to change this man's view of anything.
I left and made it to the car before bursting into tears.
THe medical board did N O T H I N G.
Posts: 1485 | From USA | Registered: Apr 2004
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
quote:Originally posted by NCLymie: Very well said, couldn't have said it better myself. I had posted the fact that Dr. J was up on charges last night and everyone was supporting him without looking at the cases themselves. I haven't been treated well by this clinic. I have been going for three years and have seen the Dr only three times. That to me is basis for malpractice. He relys on his NP who are prescribing all of my treatment. Yes, I have been helped by this clinic, however, I was extremely ill while on IV and they were of no help at all. They misdiagnosed many other ailments that were a result of the major antibiotics. It took me a year to get well from being on the IV. I just started antibiotics again and feel better when I'm on them, but why am I still ill and what can I do for the major inflamation in my body. These questions are never answered. The LLMD's need to be extremely cautious and never prescribe IV protocol without the tests to back it up. I won't say more because my post will just be deleted. You have excellent points and I'd like them posted on the post about Dr. J's charges.
I'm sure that if you had a child or loved one who is getting well because of Dr. J, you'd be supportive as well. Think they want their doc taken away ?
You claim you haven't been treated well by this clinic but continue to go ? For three years ? It's a semi-free country, you can get treated by anyone you wish.
Many people feel extremely ill while on IV abx, it's called a herx. Now, that may not be the case with you, but you then admit that you feel better on abx. So, if he treats you he's damned, if he doesn't he's damned. Maybe the conflict that exists between you two is why the NP's handle your visits ?
You ask, "why am I still ill and continue to have inflammation" ? As if any LLMD has the answer to this. If Dr. J knew he'd have people lined up around the block to get in to see him. Your question would be better directed at the CDC or NIH.
You state that LLMD's need to be cautious about prescribing IV's without definitive tests. Unfortunately, testing is only about 50% accurate. What should we do with those misdiagnosed ? Let them die to avoid an adverse reaction to IV ?
True, a small minority has difficulty with abx and IV therapy. However, the vast, vast majority have few problems with it and recover very well.
Mainstream medicine kills 150,000 people per-year through misdiagnosis, bothched surgeries, prescribing the wrong meds, etc. What percentage of these get hauled up in front of the medical inquisition ?
There's a handful of doc's willing to treat lyme and co-infections properly. I'll bet 80% have had to face disciplinary hearings. How many Rheumo's, Neuro's, ID's that have misdiagnosed, undertreated, or shown outright scorn towards ill people have been hauled in front of the inquisition ? Nada, zippo, zilch.
Our LLMD may take 2-3 days to even call us back unless it's an emergency. The man works from 7 in the morning till midnight often. Have I agreed with everything he's recommended or advised us of ? No.
However, he saved our son's life when the huge, fancy, state of the art, Mayo-like clinic we had him in previously for a week thought he had a "virus of some kind", sent us home with pain meds, and said he should come around in a few months. Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Lydie, you make some very good points. The problem that I can see with trying to bring cases to the medical board, is that it rarely seems like an individual is behind these cases.
In something where there was clear, conclusive harm caused by a specific action, yes. But the kind of case we need to bring, where harm was caused by misdiagnosis and negilgence, I think we will have a harder time.
Without the big guns of the insurance and medical associations behind us, I'm not sure how effective we can be. Maybe a few cases where someone has an ALS-like presentation, and then tests highly positive AND recovers on antibiotics. We might have a chance.
The rest is so variable, it is hard to know what would constitute a strong case.
However, I agree with you that the Lyme community needs to be responsible in our presentation. I find it very distressing that some insist on prostelytizing with undocumented information, such as a wide variety of means of transmission.
Though they may all be true, we lose credibility when we insist to the general medical community that we got Lyme from fleas, or kissing, or other such things I have heard stated as definitive fact. Without strong documentation, standard science will dismiss us, and everything we have to say. The good gets thrown out with the questionable. We certainly have enough good, solid information to take us a long way, without having to go out on a limb with unproven info.
I'm not saying people shouldn't believe it, just don't try to convince the medical establishment. Not without proof. Coincidental proof doesn't count for this purpose.
Your point about the pressure to diagnose based on only minor symptoms is another point. We begin to develop a kind of hyterical presentation that is very off-putting.
It can be hard, when in fact Lyme IS so pervasive, and so underdiagnosed, to ease up and allow room for other factors. Factors like pressure on our doctors, and the possibilty of error.
ILADS is currently working to put together a data base that any of the doctors can use to begin tracking effectiveness of specific protocols. They plan to make this database available to a large number of doctor's offices in an effort to collect some objective data on what is really going on in Lyme treatment. It will take time, but I think it is an excellent project.
The compiling of a very large pool of data from multiple collection points will not only strengthen our position, but it will also make us evaluate what really is working, and what isn't. For the first time we will have more than a few isolated studies, or individual patient reports to use to see what makes the most sense in treatment.
posted
Riversinger, your post was helpful! Limiting ourselves to scientifically proven claims, or even adding to our testimonies the fact that we are aware that anecdotal evidence is often not enough, would greatly help our credibility. I am careful about mentioning pregnancy or nursing as means of transmission. In many instances, I will explicitly say it hasn't been proven, or I was skeptical...but how to explain 3 kids and a mom with positive Western Blots and no history of tick bites?
I am so glad to hear about the ILADS database project. I own several books about Lyme (which, after 5 years on abx, I don't even bother with anymore!) and they all have totally different info on what abx work best, when- just for starters.
Filing a complaint with the Medical Board involves filling out a form, to initiate it. Does anyone know what else is involved? Does the complainant appear at the hearing? Have to have a lawyer? I am going to investigate.
I know what you mean, Carol, about being too sick, and doing complaints too many times might cause a backlash. However, in truly provable, harmful occasions when an MD not only misses but ridicules a Lyme diagnosis, and the person has positive tests later, and also gets better on abx, then complaints might help our cause. Doctors need to be as afraid of NOT diagnosing Lyme as they are of diagnosing it.
This does not address the issue of long term abx v.s. a few weeks, but it is a start.
I also think advocacy by famous people, known for their rationality, is eventually going to be a big help.
In the meantime, it is possible that overly emotionaly testimonies on behalf of these threatened doctors witll do more harm than good, I fear.
I meant to say that if I had been able to testify in Boston, I would have emphasized three beautiful words: "I don't know..." Both sides of the Lyme wars should practice these words in front of the mirror! There are so many mysteries to all this, and humility seems to be one of the best responses on all sides.
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Lydie, I think that pregnancy, at least, has good studies showing transmission. There was one recently on transmission of babesia in pregnant dogs that was quite convincing, but I believe it has also been shown in humans.
So not everything has to be given up. Just be careful of your facts. Don't give them any more ammunition to shoot us down with.
And yes, I do believe there is room for saying "I don't know."
I have these symptoms, I don't know why.
I have these positive tests, I don't know why.
I've been treated, I'm still ill, I don't know why.
The science is still evolving. There is a lot to be learned.
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