DÉJÀ VU ALL OVER AGAIN

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DÉJÀ VU ALL OVER AGAIN

The "updated" Infectious Disease Society of America guidelines for Lyme Disease have now been published. The "late stage (chronic) Lyme" folks are very disappointed. Understandably.

Many hoped that the IDSA would recognize the years of anecdotal results that has shown antibiotic treatment has brought us back to varying degrees of life. I wish I could say that any antibiotic treatment in late stage Lyme has cured us all, but, alas, that hasn't happened.

Oh, some have gone back to work (usually part-time). Some have rekindled their marriages and been able to resume child care responsibilities. But most of us remain disabled. Albeit, with antibiotics, better.

Not that anyone knew at the time, a lot of us were misdiagnosed with Chronic Fatigue Syndrome. Many of us grew up on the Internet keeping track of our CFS advocates begging for proper testing, good research, and validation by the CDC and the Social Security Administration to no avail. Instead, there was a lot of dire energy spent on trying to get a decent name and trying to find someone to take our illness seriously so that someone would find the cause of our illness.

Suddenly, we were moved over to the Lyme Disease diagnosis and bumped up against an almost parallel universe! Almost identical issues, different day.

I don't blame the IDSA. I blame my doctor, your doctor, that other guy's doctor. They took our money for the last 10-20 years, never reporting our numbers to the CDC, and never even doing a simple chart review to prove their treatment(s) were working.

So what did the IDSA have to work with? Virtually nothing. A bunch of aging Lymies railing against the lack of adequate tests, adequate research, and too few Lyme-literate MD's to care for us.

We can't expect the IDSA to make something out of nothing. And so we got a public paper that says there isn't any such thing as "Chronic Lyme."

But, BUT, they again recognized "late Lyme arthritis" and "late neurological Lyme." Most of us know that arthritis and neurological symptoms are what we are dealing with and that they took years to be disabling. We suffer with pain in the joints and spine and "brainfog" chronically and we expect everyone to know that. These are the symptoms that bought us to our knees; pulled us out of our careers; destroyed our marriages and partnerships; ruined life-long friendships; isolated us. And depressed us.

For these symptoms, the IDSA, the CDC, and the Social Security Administration recognize that these symptoms are severe and should be treated with antibiotics. We haven't lost entirely.

Here is what I consider the really unfortunate part of their paper: they only recommend 2 to 4 weeks of IV antibiotics or oral antibiotics for these major symptoms. Most of us who have gone back on antibiotics know that such a short time will probably do little. And it's certainly better than nothing.

In their paper on "Post-Lyme Syndromes," the IDSA states all the problems very well. They practically BEG for peer-reviewed research in order to prove what amounts to "chronic Lyme." They very clearly state that the anecdotal testimony and the occasional chart review doesn't prove anything to them.

Besides the lack of placebo controlled peer-reviewed research, they also highlight the problems with long-term antibiotic therapy. The problems with long-term catheter installation cannot be ignored. The infections from those lines the longer they stay in is basic Critical Care knowledge. This is nothing new or unusual. Those lines have always been problematic in the best of ICU's. Having them cared for by Home Health IV therapists increases the problems exponentially. (I know. I used to work in both arenas.) And the large numbers of patients who developed cholecystitis should never have been ignored.

The IDSA has also evoked the "fear of antibiotic tolerance" everywhere they could. It's a somewhat valid argument. Hospitals are in the throes of an antibiotic-resistant epidemic named "MSRA" and it's supposed to be caused by our use of long-term antibiotics. This fear is pummeled into every medical person from day one of their education.

I've seen some arguments against this fear that involves blaming this epidemic on the antibiotics which have been added to our meats and chicken for the past 50 years and I think there is some validity to that. The research points in our being the blame because there's none to counter it. I also blame the continued use of Neosporin for a scratch when washing alone could have handled it. Of course, it's also now an added ingredient on bandages.

In our disappointment with the latest IDSA review of Lyme Disease treatment guidelines, I think we are misplacing our anger. The blame for this under-treatment should be deposited right at our doctors' thresholds.

I can't remember how many times I had asked my previous Lyme guru if he was reporting all of his patients to the CDC, whether he was keeping track of the various treatments, and whether I could help him by doing a chart review to document his treatments. He always said "no." And I was always disappointed. I even called the local county Health Department and found that they only counted new cases that were bitten within the county borders so the 300 newly-diagnosed Lyme patients in our support group were never counted anywhere.

We should now demand our Lyme doctors report us to the CDC and do the overdue basic research. The CDC doesn't care about us? Too bad. Report us anyway. Even they estimate that only about 10% of us are being reported. (I think it's far less.) But how would the CDC and the IDSA know how many there are of us and what treatments are working for us if no one is keeping track?

And the most basic research shouldn't take a full-time employee to maintain after someone catches up the statistics in a practice. I've done chart reviews and if I could do it while I was losing my "mental faculties," anyone can do it. If they need help doing the tabulations, I know there are many volunteers to pick from!

This doesn't have to be research of the caliber that would stand up to peer-review. It just has to be an attempt to prove the need for real research. I'm certain that soon after beginning, grants will be bestowed and publications in journals may follow. If nothing else, it would be a way for "Dr. F." to communicate to a new generation of doctors that Treatment "A" or, "B" plus "D" works.

They spend all that time individualizing our care, pushing themselves, their staff, and us to find the best treatment. We know they're passionate about our care. Wouldn't they like to realize some notoriety for all their efforts? With proper research, the insurance companies will relax and laboratories will invent more specific tests.

Our ranks are full of RN's, LPN's, Nursing Assistants, other doctors, accountants, statisticians, as well as regular, previously hard-working folks - all of whom are begging to see research that reflects their own reality. Yeah, I know it'll mean actually keeping fairly legible, coherent records, but it's doable.

I think it's the least they could do for us..and for themselves.

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