Encounter with Original Old Lyme Cluster Patient

[jeezld]

Hi All,

I was walking my dog along some trails in the woods recently and entered the trails at the same time as a woman walking her two dogs. We got to chatting and I mentioned my son being very sick from LD.

She then told me she was one of the original Old Lyme cluster children studied at Yale and that Dr. Alan Steere had been her doctor. Her family vacationed at the camping grounds near the beaches during her childhood summers in Old Lyme. She had been bedridden 30 years ago when she was 6 years old with very bad joint pain that began in her knees and spread to her hips and back. She needed crutches to go to school. She was put on IV antibiotics for a short time soon after getting the EM rash and joint symptoms, and got much better and basically had a normal childhood.

She told me a couple of interesting things:

1) She has been followed up with regularly over the last 30 years by the study and as part of this gets retested every two years. She still shows high levels of antibodies and has always tested POSITIVE, including her most recent test.

2) She is always offered more antibiotics based on her positive test results. But she refuses them because she doesn't feel her lingering symptoms are all that bad.

She still gets some symptoms when she gets sick or stressed but then they go away and she feels overall well. Her worse time with her health and LD symptoms after her initial childhood illness and treatment happened to her at college when she was run down, sick and stressed. If she caught a flu, virus or cold she would get hit much harder than others would. A couple of years ago she did drop out of the high pressure corporate world due to the necessity of managing her stress levels and how they effect her health and Lyme symptoms.

3) She had been told by the study doctors/Steere that "you never completely get rid of this."

It was great to see someone who has been infected for 30 years doing well. She did mention her concern about passing it on to her children some day because of her continuing highly positive tests.

What struck me is if there is no such thing as Chronic Lyme (just post-Lyme syndrome, with no active infection) according to Steere and these folks, then why are they offering her the option of antibiotics at each follow up? And these are the same people who say there is no proof that long-term antibiotics past the initial treatment have any benefit. It just seems their public stance isn't always consistent with what may be happening in private. Especially the comment that "you never completely get rid of this." Unless that means post-Lyme syndrome...

This woman's long-term experience is interesting in many ways given the controversy and on going debate and I just wanted to share it with you here.

[enochroot]

Great to hear that story.

[itsybitsyone]

Odd...

All reports (if you google history of lyme) that I have encountered say that first steere said it was juvenile RA.

Then, he renamed it lyme arthritis because he thought it was a virus causing it, and that the original group got better without treatment.

Later, it became lyme disease when they noticed that it caused neuro and heart problems later.

Then, in the 80's they found that it was bacteria.

Now, I contracted mine the same year they did, but in NJ following a flood. My aunt's basement was flooded in early winter, waking a slew of ticks that had been dormant either in the yard or the basement. The whole house and the pets became tick infested.

I went to the house, before she knew it was a full blown infestation, and one obviously crawled into my coat...just a tiny tiny thing. It bit me on the neck. Within days, she had the house bombed by an exterminator. I had a rash and a welt. Doctors said it was an allergic reaction.

The rest is history. So, I have also been infected 30+ years. I was NEVER treated until this past May. But yes, you CAN live with this disease for a very long time. However, the older I get, the more damage it does.

Not quite sure, but I have found NOTHING else indicating at all that these kids were treated with antibiotics right away.

If there is an ongoing study of this, as she claimed, where can we find information on it?

[jeezld]

Have you read The Widening Circle by Polly Murray? She was one of the original "moms" that pushed the CDC to investigate what was happening with her family and other people's families she met in the Old Lyme area at the time. Her book goes into a lot of the early details and politics surrounding this disease, the Yale study, Steere, CDC.

Steere was a rheumatologist that had been with the CDC and was doing some unrelated research at the time at Yale. The CDC contacted him to look into the reports of the strange cluster of symptoms going on a few miles up the road from the university. His main interest as a RA MD naturally focused on these specific symptoms of his expertise, ignoring other Lyme symptoms to the detriment of the science of this illness from day one. He only selected these patients who had this symptom (and an EM), thus beginning the "selective" politics and research that we still have today. If you read this book, you'll see what I mean.

This woman told me that in the study that some people including children were given placebos and some were given the antibiotics.

This was just a chance meeting I had with this woman. Our conversation bounced all over the place: my son's illness, her illness and her current life, etc., interrupted often by our need to control our off leash dogs. After we spoke I wished I had asked her a lot more specific questions or gotten her contact information.

I had read Polly Murray's book a few years ago when my son was first diagnosed and this woman's story was in no way at odds with what was detailed in her book.

[itsybitsyone]

Its just confusing...because even his wiki page

en.wikipedia.org/wiki/Allen_Steere

Says that antibiotics treatment only started..on the adults...in 1980.

I'm not debating what you are saying. Or saying that this wasn't what you were told by this person. Please do not misunderstand...

I am just saying that it doesn't seem right, based on everything I have read. And, no, I haven't read the book, I admit.

So...is every other article...including his wiki page he can edit himself if he chooses...wrong and misinformation? I mean, misinformation DOES run rampant on the internet...BUT how weird would it be?? I'll look for more....

[jeezld]

www.vaccinationnews.com/DailyNews/June2001/StalkDocSteereReLymeDis.htm

Here is a New York Times article that really goes into it, including the 1970's study.

[itsybitsyone]

I did Read it...

Still confused, though that was an interesting spin. It still just says that a few studies later he treated with antibiotics, though. That might very well be around 1980 as articles have suggested...but again, I didn't read the book.

Here's the study of the ones I found where he DID NOT TREAT from before 1979 and forward. How can someone, anyone be OK with him when this guy pretty much performed the Tuskegee on a group of little children?

And he wonders...oh why oh why do people hate me?


The long-term course of Lyme arthritis in children.
N Engl J Med 1991 Jul 18;325(3):159-63
Szer IS, Taylor E, Steere AC

Department of Pediatrics, Floating Hospital for Infants and Children, New England Medical Center, Tufts University School of Medicine, Boston.

BACKGROUND AND METHODS. The natural history of Lyme disease is not completely known. We studied the long-term course of Lyme arthritis in 46 children in whom the onset of the disease occurred between 1976 and 1979 and who received no antibiotic therapy for at least the first four years of the illness. RESULTS. Of the 46 children (age range, 2 to 15 years), 33 (72 percent) initially had erythema migrans, 7 (15 percent) had influenza-like symptoms, and 6 (13 percent) had migratory joint pain. These manifestations were followed by brief attacks of arthritis, particularly affecting the knee. The percentage of children with recurrent episodes of arthritis declined each year. By year 4, only 10 children still had a mean of two episodes of arthritis per year; the duration of arthritis was generally longer in older children (P less than 0.05). During the sixth year of illness, two children (4 percent) had keratitis, and more than 10 years after the onset of disease, a subtle encephalopathy developed in two other chil
dren. Of the 39 children whom we were able to contact in 1988-1989, 12 (31 percent) still had occasional brief episodes of joint pain and 1 (3 percent) had marked fatigue. All 46 children had positive IgG antibody responses to Borrelia burgdorferi throughout the illness and on long-term follow-up. As compared with those who became asymptomatic, the children with recurrent symptoms more often had IgM responses to the spirochete and had significantly higher IgG titers (P less than 0.05). CONCLUSIONS. The course of initially untreated Lyme disease in children may include acute infection followed by attacks of arthritis and then by keratitis, subtle joint pain, or chronic encephalopathy.

[itsybitsyone]

Here's the first antibiotic study I can find from him. Does not seem to be a pediatric study. Not sure what he did to whom at this point...but any documented abx treatment before this 1980 adult publication does not exist.

Authors
Steere AC. Malawista SE. Newman JH. Spieler PN. Bartenhagen NH.
Title
Antibiotic therapy in Lyme disease.

Source
Annals of Internal Medicine. 93(1):1-8, 1980 Jul.

Abstract
We studied antibiotic efficacy in 113 patients with erythema chronicum migrans, the first manifestation of Lyme disease. Erythema chronicum migrans and its associated symptoms resolved faster in patients given penicillin or tetracycline (median duration, 4 and 2 days, respectively) than in untreated patients (10 days; P less than 0.001 and P = 0.005, respectively). Erythromycin had no significant effect. Although the frequency of subsequent neurologic and cardiac abnormalities was similar in all four groups, significantly fewer patients given penicillin developed arthritis than did untreated patients (P = 0.001). Among 15 patients with arthritis who were followed for at least 29 months, the total duration of joint involvement was shorter in penicillin-treated patients (median, 4 weeks) than in untreated patients (17 weeks; P = 0.019). Although the clinical manifestations of the disease may fluctuate in frequency from year to year and influence apparent antibiotic effect, we conclude that penicillin therapy shortens the duration of erythema chronicum migrans and may prevent or attenuate subsequent arthritis.

____________________________
THIS one, it would seem, was published later, but it is like the one with the kids...what happens when you don't medicate.

Unique Identifier
88022242

Authors
Steere AC. Schoen RT. Taylor E.
Institution
Department of Internal Medicine, Yale University School of Medicine, New
Haven, Connecticut.
Title
The clinical evolution of Lyme arthritis.

Source
Annals of Internal Medicine. 107(5):725-31, 1987 Nov.

Abstract
To determine the clinical evolution of Lyme arthritis, 55 patients who did not receive antibiotic therapy for erythema chronicum migrans were followed longitudinally for a mean duration of 6 years. Of the 55 patients, 11 (20%) had no subsequent manifestations of Lyme disease. From 1 day to 8 weeks after disease onset, 10 of the patients (18%) began to have brief episodes of joint, periarticular, or musculoskeletal pain for as long as 6 years, but they never developed objective joint abnormalities. From 4 days to 2 years after disease onset, 28 (51%) had one episode or began to have intermittent attacks of frank arthritis, primarily in large joints; a few had polyarticular movement. The total number of these patients who continued to have recurrences decreased by 10% to 20% each year. The remaining 6 patients (11%) developed chronic synovitis later in the illness; of these, 2 (4%) had erosions, and 1 (2%), permanent joint disability. The spectrum of Lyme arthritis ranges from subjective joint pain, to intermit
tent attacks of arthritis, to chronic erosive disease.

[jeezld]

I found this LymeNet article about the original Steere's paper published in 1977 and one in 1978 and 1979. Quotes about the effectiveness of antibiotics are given from these papers, so Steere would have had to have included use of antibiotics in his studies during this time:

"It may surprise some to learn that in the first few years
he was associated with Lyme disease, Dr. Steere believed antibiotics were ineffective. In a 1977 Lyme disease paper [13], Dr. Steere and his colleagues state "We remain skeptical that antibiotic therapy helps." In a 1978 paper [14], Dr. Steere and his colleagues wrote "To sum up the therapy of Lyme arthritis (Lyme disease), it appears that at this point only symptomatic treatment is feasible." In a 1979 paper [15] on the neurological abnormalities of Lyme disease, Dr. Steere and his colleagues reported that they "have noted no benefit from antibiotic treatment."

www2.lymenet.org/domino/nl.nsf/b18db4ad8571a779852565e3007d9d16/8de2fc23a880cdf6852565e30014945d?OpenDocument

[itsybitsyone]

(You know I am loving this conversation, don't you? )

Anyway...The lymenet article doesn't say if he actually was trying antibiotics or just saying they wouldn't work. Agreed...the comments LOOK like maybe he tried...but do not give conclusive evidence. And, because we know other articles and years of reseach indicate abx DO work...I have to assume he was making these claims with no studies to back it up. He's saying in the articles there is no benefit...but does it say...hey I gave pennicillian to 20 kids and no one improved...or is he saying, I think we have a virus here and abx use is not warranted??

The annals, so far as I can tell, do not go back to '77 online. Couldn't get the article. Looks like they only go back to 93. Bummer.

The Hospital article, couldn't find that when I googled it. Pubmed mentioned the NAME of the medicine article about the neuro symptoms, but only the title, no article that I could find.

Any idea where we could actually LOOK at what he actually wrote during this time? I mean, Lymenet must have read it to comment on it...unless they are applying their own spin. So, the articles MUST be available somewhere....

You give a good debate without getting freaked out by me challenging this. Thanks for that. This is fun. And informative. You're making me think.

Really...its because I was infected back then that this is very interesting to me. I need to know if this is worth treating at this point. The only way I can come to that very personal decision is to open-mindedly learn all I can.

[jeezld]

I tried to find the original 1977 article too but couldn't either.

All I know is what I read in The Widening Circle and what this woman told me: they studied the effects of antibiotics on the initial cluster patients.

I don't think the authors of a peer reviewed scientific paper announcing the discovery of a new illness would just say things like "We remain skeptical that antibiotic therapy helps" without having done actual antibiotic testing on patients. But I guess I could be giving the journal, scientific community and authors too much credit!

The thing you really get from Polly Murray's book is that Steere as a RA MD wanted to discover an new, self-limiting RA illness. He discounted information that didn't fit this pre-conceived idea. All his research became a self fulfilling prophecy.

I did find this interesting tid-bit though (I hope your link opens up to page 74):

books.google.com/books?id=SokNhmzFERIC&pg=PA74&lpg=PA74&dq=annals+of+internal+medicine+1977+steere&source=web&ots

Additionally on page 110 of this book it says that they set up a simple trail in 1977 all their study subjects were given antibiotics (They then withheld them in 1978).

Wish we could see the original paper for ourselves.

[itsybitsyone]

It said it did not have that page. SOB

Now, I did mention in another thread that he did say in the 70's that it was self limiting. I still think not treating those kids was pretty sick...when there was evidence back then to the contrary.

Dr. J, the pediatrician under investigation maintains that he was trating it with antibiotics before Steere ever came into the picture...because he didn't know what it was, but that it was obviously an infection that was responding to antibiotics. If you look at people like Polly...and others....it started way before Steere ever came into the picture and had many names.

I can tell you it was already in NJ by the time he was brought into the picture. What truly did give him the right to try to reinvent the wheel? And, like we mentioned on another thread, why does his ego preceed his actions...still...30 years later?

Anyway...more on this monday. Once I leave at 5 I won't be posting until then!

[itsybitsyone]

Thanks for the email...and I QUOTE: (because it never says if the yale docs...Steere et al, actually USED antibiotics themselves)

"The best treatment for this illness is not clear. Some physicains (they refer to Eurpoean literature) have reported that penicillian or tetracycline results in disappearance of the skin lesions but others have found antibiotics to be ineffective. Four of the patients with expanding skin lesioins received penillian but still developed arthritis".

That was from Arthritis and Rheumatism 1977. It leads you to believe that THEY gave the antibiotics. However, it goes on to say that later that year in the annals, they say:

" We remain skeptical that antibiotic therapy helps; the large variation in the natural course of the disease makes it difficult to evaluate whether the observed improvement in the individual patient would have occurred anyway. Eight of our patients received penicillian, ertythromycin or cephalexin before before entering the study because of the skin lesion. In one of them, the lesion persisted despite therapy, longer than in any of the other study patients, and seven of the eight still developed joint, neurologic or cardiac abnormalities"

NOW. First, they lead you to believe that 4 people didn't respond. Then, its 8 that never got the meds from them. Erithromycin (could be what the person got) was proven to cause a BB resistance recently. ALSO...we know that too short a course is worse than none at all.

It IS hard to tell...because it is rather cryptic

see you monday! Thanks for the email!!!!!!!!!!!!

[LymeEnigma]

Great debate! I think I've been reading links far too long and my head is spinning a bit, but I am very interested in reading more of Ms. Murray's thoughts on this. The article on Steere was a very thought-provoking read, definitely one for the bookmarks even if it did provide a little spin of its own.

[jeezld]

Hi LymeEnigma and itsybitsyone,

I think that anyone who really wants to understand the politics and controversy surrounding this disease would be well served by reading Polly Murray's book "The Widening Circle." It is a very interesting read on so many levels. Reading what happened on a personal level to someone who kept a journal of her and her family's symptoms, along with becoming a sort of clearinghouse for people around the world with similiar stories is fascinating and details about the early players in the medical and scientific communities, hidden and not so hidden agendas, etc., it makes understanding how we got to where we are today more understandable. I highly recommend adding it to your libraries.