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RandomGirl's avatar

What do you know about Lyme Disease and its reputation in the medical community?

Asked by RandomGirl (3352 points ) May 28th, 2013

If you’ve been following my posts over the last few months (I think I’m up to eight months now), you know how hard it’s been for me to figure out what’s wrong with me. It’s been a while, but we finally know what I probably have: Lyme Disease! I’ve been on the antibiotics for four days now, and I’m reacting exactly how Lyme usually reacts. Yippee!

So now here’s the hard part: If this is Lyme, I’ve had it in me for at least eleven months, or even as long as eight years. When I was about eight, I got bit by a deer tick and had a really dramatic, multicolored bulls-eye rash around the bite. They gave me a short round of antibiotics at the time, but no one really thought much of it. I’ve read on the internet that Lyme can be dormant for a few years, so this is possibly an explanation for all the health problems I’ve had over the years.
But anyway. This is going to take some work to beat. But apparently doctors can’t treat Lyme past thirty days or they’ll get sued by insurance companies. Why is this? What does the medical community think Lyme is, and why do they think doctors shouldn’t treat it past thirty days? Why do Lyme-literate doctors (LLMDs) have to be so secretive in their practices?
What can I do to get around all this? Is there anything state-specific I should know? (Like, for instance, if Wisconsin doctors can practice more freely than Minnesota doctors, I want to know! I’m right on the border and can go either way.)

Anything you can tell me about Lyme Disease, its treatment, its reputation in the medical community, or legal loopholes that I can use in getting treated, would be appreciated.

I would also like to say that everyone’s help and support over the last few months has been wonderful. Thank you guys so much!

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11 Answers

snowberry's avatar

Unfortunately there is too little known about Lyme disease. For a whole year I took care of a friend who had it, and I know first hand. First, it’s blood borne through ticks, but although the medical people insist you can’t get it through body fluids, there are some people who aren’t so sure. I never shared plates, etc. with her for this reason.

If you’ve had it as long as you think you have, it already is well entrenched, and treating it may be not as effective.

My friend not only had lyme disease, she also had POTTS, Bartonella, and Hashimoto’s disease as well. In her case, it was as if these different diseases “shook hands”. Whenever they tried to treat one disease, the treatment helped the other(s). It also didn’t help that she could not find a doctor to help her deal with the pain, or to treat the POTTS. She lived in Pennsylvania and Delaware.

Apparently in the US, you can only get serious pain medication if you have certain diseases. My friend used to pray she’d get cancer just so she could get some decent pain medication.

By the way, Bartonella is considered to be a “dog and cat disease”. Our CDC refuses to let people in this country be tested for it. My friend managed to get a veterinary friend to test her for Bartonella and it came back positive (apparently this is illegal). She also had photographs of her blood with the bartonella bacteria all over her blood cells, but they still would not treat it.

The lesson is, be glad you at least have a disease that’s legal to treat in this country.

I’ll post more if I think of it.

Tropical_Willie's avatar

“But apparently doctors can’t treat Lyme past thirty days or they’ll get sued by insurance companies.”
I would contact in writing your insurance company. You can’t sue a Doctor for treatment of a patient.

My sister was treated after many years of vague symptoms, she had to go into hospital for IV antibiotics for weeks. Then antibiotics pills for any more weeks.

I would contact your local Lyme disease advocate group.

rooeytoo's avatar

Just about every dog groomer I know in the eastern USA has it. I don’t know much about it because I left there 15 years ago and not much was being said at that point in time. But if you have the time, stop in your local grooming shop and see what they have to say.

RandomGirl's avatar

@Tropical_Willie That’s what I thought, but it’s really hard to find a Lyme-literate doctor (an LLMD), because they have to operate somewhat secretly. The reason for this that I’ve seen several places on the internet is that chronic Lyme (the kind that lasts years and is very hard to treat) is a very controversial topic – some people say it’s all a hoax. This would mean that doctors treating it would be getting paid for something they shouldn’t be getting paid for. I guess.

Tropical_Willie's avatar

Hoax show up a spirochetes on a lab test, not likely.
Contact your local advocate for Lyme Disease. My sister was treated in Middletown, CT just a few miles from Lyme, CT.

gailcalled's avatar

I live near the epicenter for Lyme disease in the country (relatively close to Middletown, CT). Every doctor, nurse and adult around knows about the tick problems. There are weekly articles in the paper about how to dress to avoid them, how to search for them on your body and what to do if you find an embedded and engorged tick on your body or the bull’s eye rash.

An accurate diagnosis can be tricky due to the time issue. Most of us have been overtreated with antibiotics on the policy of “better-to-be-safe-than-sorry.” Two years ago I developed some mysterious aches and pains in my legs and knees. The Lyme tests were unclear. I insisted on the short course of antibiotics.

Six months later I discovered that I had osteoarthritis in my knees rather than Lyme disease.

Treating chronic, long-term Lyme that has not been treated early is a challenge for the best-informed doctor.

And there are other similar and equally nasty tick-born diseases around now that confuse the issues.

Erlichiosis
Babesiosis
Rocky Mountain spotted fever
Anaplasmosis
Complete list and info

snowberry's avatar

Here’s how Lyme disease works. They do blood tests for it, but the Lyme disease lives in the synovial fluid of the joints, not in the blood. It just uses the blood as a highway system to get to the next joint. That’s why a positive blood test is so hard to get. If you and your parents really want to know for sure it’s Lyme, have the doctor draw out and test the synovial fluid in one or more of your affected joints. That’s a much more effective way to proceed, and one that many (most) doctors have no idea about.

I suspect that insurance companies would also balk at drawing fluid from a joint for testing because it’s not usually done. But it’s a sure way to know if you have it or not.

Edit: As for why an insurance company won’t allow treatment if you’ve had it for longer than 30 days, well I can think of one big reason. They don’t have to pay! Insurance is big business! They really don’t care about whether you- or anyone gets well. They want you to keep paying your premium, but if you’re likely to have a big bill, they’d rather you just go away.

JLeslie's avatar

My personal opinion is there might also be other bacterial infections being missed. Some doctors are adamant that other doctors are overtreating for Lyme’s. That the patient is negative on all accounts, no evidence of infection and that there is no such thing as “chronic” Lyme’s disease. Thing is, if a lot of patients feel better on antibiotics, then I think something is being treated. May not be Lymes at all, but another underlying antagonist, who knows, doctors like to have evidence.

A girlfriend of mine had Lymes disease, really wreaked havoc on her joints. She lived in California at the time, wasn’t getting diagnosed or treated correctly. She eventually was treated in Boston, and the progression has stopped and overall she is almost completely better. This happened years ago, maybe 15 years ago, I don’t remember the time frame exactly. She had the symptoms for many months, well over 30 days, before she received treatment.

Since you have a diagnosis, and are being treated, I would feel optimistic if I were you.

I really doubt your problems are from a tick bite many many years ago.

I doubt a doctor will get sued for prescribing antibiotic pills for a couple of weeks what has been called into question is long term, months, of IV antibiotic treatment. The medical establishment believes there is not proof it does any good. It is not within the “standard of care” for treatment of Lymes disease. Doctors risk being sued when they cause harm and were outside the standard of care. I was treated with IV antibiotics by a doctor when no one else would. It was not for Lymes, but for something else. I was sick for many years, and that IV was a gift! I had all sorts of evidence of infection, but no cultures to prove it. He created cultures to justify giving me the meds, they were real cultures, nothing was falsified, but it is not something commonly treated by other doctors. He and I both agreed we really had no idea for sure what was being treated, but the broad spectrum antibiotics helped. I already had some experience with a particular antibiotic taken orally being magical, so he gave me that in a supermegadose IV and one that he used with other patients that had been successful. Basically guesswork, a little voodoo, a little antidoctal experience, and medical science isn’t very fond of that.

snowberry's avatar

Um, doctors cause harm all the time. But some harm is more “OK” than others. Some stuff that happens they don’t consider harm, but the person who experiences it, definitely does.

JLeslie's avatar

@snowberry Absolutely they cause harm all the time. I would not disgree with that. But, their oath is to not cause harm. Anyway, let’s say they screw up royally, but the patient has no mal effects, then the doctor basically has no problems, know what I mean? The patient may never know the doctor messed up. Or, the doctor causes harm, but they followed the standard of care, they can’t easily be sued, can’t really be held culpable, because they did what has been determined to be the right thing to do medically. And, then, there is a whole bunch of grey area.

rooeytoo's avatar

I don’t like doctors at all, that is why I said check with the dog groomers. They all seem to have it and are dealing with it!

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