Living in a state with high incidence of Lyme Disease, I am often confronted with individuals who blame Lyme for all medical ills. I’m frankly surprised I never had Lyme Disease, as I grew up here riding my horse through the woods like a mad cowgirl, pulling ticks off of myself for days afterward.

In this area, there are several doctors who now specialize in Lyme disease and have “Lyme clinics.” They claim that there is no definitive test for Lyme, and therefore judging on symptoms alone they install an IV port in the chest of patients and do one month to several months of IV antibiotic infusion.

I do not doubt Lyme disease is real, however, I am skeptical of the widespread need for these clinics who give large doses of antibiotics to just about anyone who walks in with vague symptoms. These are not often covered by insurance, and large cash payments are required. Along with these IV infusions, herbs and vitamins are often peddled, and chiropractic and acupuncture treatment encouraged by affiliates who may or may not receive some kind of referral fee. Some claim Lyme disease is sexually transmitted, so if one spouse is being treated, the other spouse must also receive expensive IV antibiotics, for cash, at their clinic of course. This seems far fetched to me.

A relative of mine (by marriage) was placed in a nursing home with serious memory problems and given Lyme IV antibiotics for a month. But she continued to get worse so they discovered it was early onset Alzheimer’s (I tried to warn her doctor about this, her father died of early onset Alzheimer’s at only 55 years old.) When I mentioned this situation to someone off hand, she forwarded me this link, and claimed it “proved” that Alzheimer’s is caused by Lyme disease. http://stcatherines.chsli.org/research.htm

It appears the researcher found Lyme bacteria in a few samples of the brains of Alzheimer’s patients (a group of 10, he found them in 7). So he has a hypothesis that Lyme might cause or trigger Alzheimer’s. If this is so, and Alzheimer’s is caused by Lyme Disease, how would that account for millions of cases of Alzheimer’s in other parts of the world where there are no deer ticks and no incidence of Lyme disease? Seems unlikely?

That being said, I have little knowledge of the disease other than basic brochures from the health department encouraging people in the area to check themselves for ticks after yard work. Looking it up online ends up with lots of hits for woo-woo websites.

Lyme Disease seems very controversial, with even doctors disagreeing on treatment and methods of diagnosis. Any thoughts out there?

Jules - 21 July 2009 08:50 AM

Living in a state with high incidence of Lyme Disease, I am often confronted with individuals who blame Lyme for all medical ills. I’m frankly surprised I never had Lyme Disease, as I grew up here riding my horse through the woods like a mad cowgirl, pulling ticks off of myself for days afterward.

In this area, there are several doctors who now specialize in Lyme disease and have “Lyme clinics.” They claim that there is no definitive test for Lyme, and therefore judging on symptoms alone they install an IV port in the chest of patients and do one month to several months of IV antibiotic infusion.

I do not doubt Lyme disease is real, however, I am skeptical of the widespread need for these clinics who give large doses of antibiotics to just about anyone who walks in with vague symptoms. These are not often covered by insurance, and large cash payments are required. Along with these IV infusions, herbs and vitamins are often peddled, and chiropractic and acupuncture treatment encouraged by affiliates who may or may not receive some kind of referral fee. Some claim Lyme disease is sexually transmitted, so if one spouse is being treated, the other spouse must also receive expensive IV antibiotics, for cash, at their clinic of course. This seems far fetched to me.

A relative of mine (by marriage) was placed in a nursing home with serious memory problems and given Lyme IV antibiotics for a month. But she continued to get worse so they discovered it was early onset Alzheimer’s (I tried to warn her doctor about this, her father died of early onset Alzheimer’s at only 55 years old.) When I mentioned this situation to someone off hand, she forwarded me this link, and claimed it “proved” that Alzheimer’s is caused by Lyme disease. http://stcatherines.chsli.org/research.htm

It appears the researcher found Lyme bacteria in a few samples of the brains of Alzheimer’s patients (a group of 10, he found them in 7). So he has a hypothesis that Lyme might cause or trigger Alzheimer’s. If this is so, and Alzheimer’s is caused by Lyme Disease, how would that account for millions of cases of Alzheimer’s in other parts of the world where there are no deer ticks and no incidence of Lyme disease? Seems unlikely?

That being said, I have little knowledge of the disease other than basic brochures from the health department encouraging people in the area to check themselves for ticks after yard work. Looking it up online ends up with lots of hits for woo-woo websites.

Lyme Disease seems very controversial, with even doctors disagreeing on treatment and methods of diagnosis. Any thoughts out there?

Well, I think the controversy is that it may get blamed for things it didn’t cause. But there’s no doubt that Lyme disease is real—they’ve found the causative agent, and people have gotten sick from it. My family has a house in a real hotspot for it, and my parents have both had it. There are ticks everywhere. But it responds very well to antibiotics. The local hospital does routine blood tests for people who present with the right symptoms, and if they come back positive they’re given antibiotics. (Generally it seems like a really bad flu with high fever, but responds within 24 hours to antibiotic treatment, IIRC).

Of course, these are only anecdotal cases, but I don’t believe there’s any doubt that it’s a real syndrome. Again, the only question is whether or not it’s getting overdiagnosed.

Oh yes, it is a real disease. No doubt it’s real and when caught early standard antibiotic pills will do the trick. The problem - I think - is that quacks may be piggybacking on it for profit and telling people who do not have it that they do (such as saying spouses must be treated because it can be transmitted sexually, scaring the spouse into forking over cash and taking expensive IV antibiotic treatment not covered by insurance).

There are also doctors who say, even if someone does not test positive for the disease, that they have a chronic long term case and must take these special IV antibiotics. I understand there is some debate over the standard “Western Blot Test” I think it’s called, the blood test, with some doctors saying it’s a good test and other saying it’s useless and gives many false negatives.

Other people complain that their doctors are not “Lyme Literate” and should be aware of special labs that do special new or non-standard tests. I don’t know a thing about these, and wonder if they are legit.

People I know who have had Lyme get the bullet shaped rash, take 30 days of pills, get better. Where it gets fishy is the people who simply complain of tiredness, and their chiropractor or hairdresser refers them to a “Lyme clinic” where they’re told blood tests are useless and to fill out a checklist of symptoms such as “Do you have any of the following? Fatigue __ Trouble Sleeping ___ muscle soreness ___ forgetfulness ____ If so, you have Lyme. We can treat it for only $XXXX!” Well just about everyone I know at some point has fatigue, trouble sleeping, muscle soreness, and forgetfulness. I’m suspect of this type of operation.

It is certain that people do sometimes go undiagnosed for a long time, and get chronic or hard to treat cases that require IV heavy-duty antibiotics. This is not something I am challenging. I just suspect and worry that some quacks are taking advantage of this because people know so little about the disease, and its symptoms can be varied or vague or misdiagnosed.

Having done some reading awhile back about Lyme, I think you’re right in your suspicions—there are a bunch of unscrupulous quacks out trying to make money on treating people who are not ill with Lyme or in treating it with non-functional medication.

Lyme Disease is a real magnet for quackery. There is a true infectious disease here, but it is correct that there is no definitive test that will show a particular set of symptoms is due to the infection. The bug is hard to culture, PCR shows it’s present but not that it’s causing the symptoms, antibody titers show only exposure not active infection, and so on. The acute phase is fairly straight forward to diagnose based on clinical symptoms and antibody titers or PCR, and responds to a few weeks of antibiotics. The late-onset problems are mediated by the immunse system and likely also have roots in the particular genetic makeup of the few people who get them.

The quackery comes in when people who have a positive antibody titer showing exposure to the Lyme Dz bacterium, or who have had Lyme Dz in the past, begin to attribute a whole variety of vague symptoms to this organism and quacks come forward to offer long-term antibiotics or even more far out treatments. HERE is a quick summary of the controversy and the scientific consensus, as well as an example of how the promoters of quackery use the political system to promote their practices.

Excellent link, thanks! The article is right, most of the Lyme Clinic doctors around here use the antibodies as the indicator for treatment, if they use any blood work at all. Many just go by “fatigue!” (I’m fatigued every day, It’s called being a working mother - ha ha.)

One of the things I worry about, the people who go to these clinics that really have M.S. or rheumatoid arthritis or other conditions that are being pumped full of needless antibiotics while their real condition goes undiagnosed and untreated. Not to mention all that needless antibiotic use contributes to resistant bacteria. What a shame!

Reading that link helped me to understand that the debate is not Lyme Disease itself, but “Chronic Lyme Disease” which is more a controversial diagnosis.