http://flash.lymenet.org/ubb/Forum1/HTML/024345.html

there is absolutely no reason to use steriods for Guillain Barre, period. The latest evidence suggests either IV-Ig or plasma-pherisis, not both. So tell the doc he should be reading his journals.
Secondly, I don't know what doctors you guys are seeing but there's absolutely no reason for any doctor in any part of this country to dismiss Lyme disease. Columbia-Presbyterian/New York Hospital is doing extensive research on Lyme and if your doctors are not keeping up with the mounds of studies suggesting the severity of this disease then they're idiots.

One of the problems I've mentioned before is this: just because it's published doesn't mean it's necessarily good science. Reading an abstract is not enough, and posting them here is one step less. You must educate yourself on how to read the statistical analysis and the methods to determine the merits of the conclusions, something I've barely even begun to master as a 3rd year medical student.

This is the reality of the future. It's not enough to say that everybody does or doesn't have Lyme, it must be proven effectively by evidential data or it won't become mainstream. And that data must be good data if everyone's going to use it as gospel. There are thousands of articles I've personally seen, many I've read, and just as many that contradict one another.

I don't believe there's the conspiracy many of you complain of, but maybe I'm the naive one. It's just that I can't believe everybody who contracts Lyme disease becomes inevitably as sick as many of you, it's not borne out by the evidence I've read. In study after study I've seen that even 10 days of doxycycline showed that 89% of those treated were symptom free at 30 months.

I don't know if most of you think that's not long enough to follow a patient who had symptoms of early Lyme, but it's a statistically significant amount of time. If most of you were symptom free for that long and then contracted the symptoms of late stage Lyme then there's something more that needs to be done in this study and it must continue.

Anyway, just my two cents worth of talk. Again though, no need for steriods in Guillain Barre, Lyme or no Lyme.

END OF QUOTE

What I had wanted to remind you about is that most of the folks here who are so sick were not diagnosed early, when LD is more easily treated. Our daughter is a prime example. We recall her tick bite when she was in third grade, back in 1973 (not a misprint). Her worst symptoms began then and by high school, she was unable to attend school at all and had to be placed on the homebound program.

By the time she was finally diagnosed and found an LLMD, it had affected her heart with mitral valve prolapse with regurgitation, which has reversed now, following long-term abx therapy. Her progress has been truly amazing because she had become so disabled that she was barely able to take care of herself, prior to treatment.

Yes, late-stage LD is quite devastating. Unfortunately, what is written in the medical literature ignores most of these late-stage problems because by then, the patients have been labelled with other "trash-basket" diagnoses instead, such as fibromyalgia or CFIDS or various auto-immune diseases and told that their case was hopeless and incurable.

Just because their cases aren't adequately represented in the medical literature doesn't lessen the reality of what they have endured and experienced. Please understand that late-stage LD is not easily cured with short-term treatment, in spite of what the medical literature might suggest to the contrary.

These patients suffer equally as much as cancer patients or as congestive heart failure patients do, whenever their LD has gone undiagnosed for many years. The good news is that LD can be put into remission and can be managed and controlled, if properly treated, although the therapy protocols are still evolving.

Thanks for your sustained interest in participating here at LymeNet in an honest exchange of questions and answers.

Skeezic Doc--the truth lies somewhere between 89% with early treatment get well, and the theories on this board. First of all, consider that probably only around 50% get the rash--so the rest will be diagnosed late anyway. Secondly, consider that you need a good 6-8 weeks abx in early disease more often these days than before. Burrascano's treatment guidelines are correct in that many treatment failures (myself included) had 2-3 weeks doxy early on (I got the bullseye 12 days after my visit to Connecticut on a June day).

There are new persons here who have to wait and see to.

I for one took meds for eight months i mean heavy, doses of abx like eight five hundred mg of doxy a day plus a thousand of amoxi.

I am heavy so i believe this is why the extream dose. In hind sight tho i dont believe i needed that high a dose because im on three hundred a day and still herxing.

Anyway i took these meds for eight months. Concerned about taking to much i quit on my own. Did great and then in about six months here i went again with the symptoms and by a year i was down again. Had a WB this time with a new doc and i had nine possitive bands some low some high.

Went on abx for another eight months and quit again because of finaces for one thing. And now here i am back again sick one year later. I have been on meds for six months.

Now i am concerned about co infections and i think that might be my problem now.

Poppy skeezidoc is a good guy. I for one like to hear his opinion. I think it gives us the perspective of the doctors view to.
Even if we may not like to hear it. We can talk back to him and nicely share our view and he still listens which is refreshing.
I know your new and dont know him like we do.

You pinpointed exactly what's wrong with all the studies on Lyme. They're all geared toward early lyme with an erythema migrans. A good study on late stage lyme would most likely show long-term abx are effective or abx failure with disease still present because of co-infections. The reason the Lyme tests are so inaccurate is that they all are based on detecting early lyme. The Western Blot bands were determined based on the most common bands of early lyme patients. This forum exists because most of us were overlooked. Early lyme is not a problem with this disease. Misdiagnosis resulting in late stage illness is.

I only hope that Dr. Fallons study at Columbia shows that late Lyme patients still benefit from antibiotics.

He's having trouble reconciling what he finds in the medical literature with what he finds here at LymeNet, but that's to be expected, since what's written up in the medical literature ignores many of the studies and reference citations pertinent to reasons for chronic, late-stage, persistent LD.

For that reason, as long as Skeezixdoc is still interested in spending time here with us, then it's worth our time in trying to help him see where these discrepancies and gaps are and to try to fill them in for him. Believe me, they are there in the medical literature, too, but one has to know where to look for them and how to knit them together in order to see the larger picture.

These people may be symptom free at 30 months, but do these studies offer any look at their blood work at this stage? Are their tests + for lyme?

I was originally diagnose in '91 and on abx for the better part of 2 years. Symptom free for a few years, but then experienced bursitious and joint pain, muscle problems, headaches on and off over the years. Nothing major until November of '03...and then I tested positive again.

Are these studies following up on testing these patients? You can be symptom free but still have lyme.

As an added note to all here: it took my docs 6 months after I first became ill to finally test me for lyme and start treatment.

kam01

TX mom thanks for the vote of confidence and the eloquent response. I re-read my quote and it does kind of come off in a way I didn't intend...kind of cynical in parts. But I guess it's hard being in my position. I'm being asked to believe in things I'm being taught at the same time I'm encouraged to find my own way. It's something of a contradiction and can be confusing and frustrating.

What I do stand by is what I said about truly understanding the literature, and I'm sure many of you have read much, much more than I on this issue and have a deeper commitment and stake in finding answers. So don't misunderstand that part of my statement.

I also am beginning to realize the nature of this illness as far as how many may have been misdiagnosed, and treated either wrongly or not at all, and so now are in late stages of the disease. Whether or not the current treatment guidelines suggested to most doctors would have prevented this is hard to guage.

That said, I'm one of those who was never properly diagnosed until 37 years after my initial tick bite...yes 37, I had the rash, swollen painful knee joints, fever, neck pain, swollen lymph nodes at 3 years old.

I am now 40, and have a daughter and a son who both have congenital lyme disease. As you might imagine, my children have many health problems too.

My whole childhood from infancy, my family went camping almost every weekend in the summer in Maryland.

Needless to say I have never been "healthy" - diagnosed with arthritis as a child, but strangely it would hit different joints, stay for a while then go away.

I had a myriad of gastrointestinal problems,
fatigue, got sick all the time - one year I missed more than 40 days of school.

Diagnosed with Fibro, had endometriosis, have mytral valve prolapse...can't remember everything but my medical chart is very thick.

Until last year, I didn't know much about Lyme disease, and am still learning. I developed a headache a year and a half ago that just would not go away - along with a painful stiff neck.

I've always had trouble with migraines - but this headache just will not go away (still have headache and neck pain 1 1/2 yrs. later)

I don't remember what it feels like to not have a headache. Also deal with short term memory problems and not being able to think straight. (like my brain's in a fog)

Last fall I developed Bell's Palsy on the left side of my face and the doctor said he thought I might have Lyme disease, this also affects my left side of my body, and when swallowing, hence the beginning of my journey.

I only wish that I, and everyone else on this board and elsewhere had been properly diagnosed at the onset.

BEGIN QUOTE:

In the competitive atmosphere of those prestigious academic ivory towers, much depends on one's grant-seeking prowress -- on just how much $$$ in research grants which a researcher is able to bring into the university coffers. "Up or out" is usually the idea behind meritorious promotions. So, the bigger the grants, the more powerful the professor.

That's how control is exercised over who remains in academia and who gets booted out. Believe me, I know a lot about the game of grantsmanship because my husband is an academic researcher. His field is very competitive, too, but it's not so cut-throat the way the field of medicine is.

If the PTB (powers that be) want to kill an idea or an area of research, they do it by choking off the supply of grant money into that area. Then, when grants are given, they are given only to those researchers who can be depended upon to toe the party line. Once we recognize what's going on, then we can appreciate better how and why all this junk pseudo-science stuff gets published.

Yes, you're right, Mo, we've got to start dissecting their work and pointing out their inconsistencies and omissions. Hit them where they are weakest, by finding the obvious flaws in their papers, not just by working ourselves up into a tizzy and fuming about them, because that is futile and only makes us feel just that much more desperate. Go for their jugular veins and tear their work to shreds by seeing where they contradict themselves.

A fun place to start is by comparing ACS's earlier writings, prior to the change in the political winds back in the early 1990s (sometime around 1992-93), and contrasting what he said then to what he started saying soon afterwards.

In fact, a key date and turning point would likely be around the time when that infamous paper was published saying that the treatment of LD wasn't cost-effective -- although I'm not sure if Steere was a co-author on that particular paper or not. I'll try to did up that historic article and post it next, if I can succeed in finding it, because it will help us to establish a time line for the change in the direction of the political winds pertaining to LD research.

Well, well, well.....guess what I found:

Ann Intern Med. 1993 Sep 15;119(6):503-9.

Comment in:
Ann Intern Med. 1993 Sep 15;119(6):518.
Ann Intern Med. 1993 Sep 15;119(6):528-9.

Empiric parenteral antibiotic treatment of patients with fibromyalgia and fatigue and a positive serologic result for Lyme disease. A cost-effectiveness analysis.

Lightfoot RW Jr, Luft BJ, Rahn DW, Steere AC, Sigal LH, Zoschke DC, Gardner P, Britton MC, Kaufman RL.

Division of Rheumatology, Kentucky Clinic J515, University of Kentucky Medical Center, Lexington 40536-0284.

PURPOSE: To examine the cost-effectiveness of empirical, parenteral antibiotic treatment of patients with chronic fatigue and myalgia and a positive serologic result for Lyme disease who lack classic manifestations.

DATA SOURCES: Peer-reviewed journals, opinion of experts in the field, and published epidemiologic reports. STUDY

SELECTION: Consensus by authors on articles that indicated methods for patient selection; on criteria used for diagnosis; on immunologic methods used for classifying patients; on the dose and duration of therapy; and on criteria by which responses to therapy were ascertained.

DATA EXTRACTION: In a cost-effectiveness model, the costs and benefits of empirical parenteral therapy for patients seropositive for Lyme disease were compared with a strategy in which only patients having classical symptoms of Lyme disease were treated.

DATA SYNTHESIS: In areas endemic for Lyme disease, the incidence of false-positive serologic results in patients with nonspecific myalgia or fatigue exceeds by four to one the incidence of true-positive results in patients with nonclassical infections. Treatment of the former group of patients costs $86,221 for each true-positive patient treated. The empirical strategy causes 29 cases of drug toxicity for every case in the more conservative strategy. If patients were willing to pay $3485 to eliminate anxiety about not treating possible true Lyme disease, the empirical strategy would break even.

CONCLUSION: For most patients with a positive Lyme antibody titer whose only symptoms are nonspecific myalgia or fatigue the risks and costs of empirical parenteral antibiotic therapy exceed the benefits. Only when the value of patient anxiety about leaving a positive test untreated exceeds the cost of such therapy is the empirical treatment cost-effective.

Publication Types:
Meta-Analysis

PMID: 8357117 [PubMed - indexed for MEDLINE]

Comment:
There were about a dozen similar papers, but this was one of the earlier ones, the one which I remembered having seen and which marked the turning point in the direction of the political winds regarding LD. Shortly thereafter, the infamous Dearborn Criterial for diagnosis of LD was published in 1994, which effectively made it practically impossible for folks with suspected late-stage LD to get properly diagnosed.

Therefore, when you read through some of Steere's older papers, take note of the dates of publication. That's how you'll be able to observe when it was that he started singing a different tune and how his earlier work contradicts what he began saying later.

END OF QUOTE.

Link to the previous topic:

I like the fact that this fella is here...maybe he'll do an internship with Dr Crist, Burrascano, or Masters?

Who knows?