Topic: New Study on Chronic Lyme by Wormser and Shapiro
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
This just posted on LymeFriends by Cave76:
Womens Health. 2009 Jun;18(6):831-4. Implications of gender in chronic Lyme disease. Wormser GP, Shapiro ED.
Division of Infectious Diseases, Department of Medicine, New York Medical College, Munger Pavilion Room 245, Valhalla, NY 10595
BACKGROUND: "Post-Lyme disease syndrome" refers to prolonged subjective symptoms after antibiotic treatment and resolution of an objective manifestation of Borrelia burgdorferi infection (Lyme disease). "Chronic Lyme disease" is a vaguely defined term that has been applied to patients with unexplained prolonged subjective symptoms, whether or not there was or is evidence of B. burgdorferi infection.
OBJECTIVE: To determine if the population of patients with chronic Lyme disease differs from the populations of patients with either Lyme disease or post-Lyme disease syndrome by examining the gender of patients with these diagnoses.
METHODS: Data on gender were compiled in this cross-sectional study based on a systematic review of published studies of antibiotic treatment in United States patients with post-Lyme disease syndrome (n = 184) or chronic Lyme disease (n = 490), and on cases of adults with Lyme disease reported to the Centers for Disease Control and Prevention from 2003 to 2005 (n = 43,282).
RESULTS: Patients with chronic Lyme disease were significantly more likely to be female than were patients diagnosed with either Lyme disease (odds ratio [OR] 2.42, 95% confidence interval [CI] 1.98-2.94, p 0.0001 or with post-Lyme disease syndrome (OR 2.32, 95% CI 1.62-3.34, p 0.0001.
CONCLUSIONS: Patients with chronic Lyme disease differ with regard to gender from those with either B. burgdorferi infection or post-Lyme disease syndrome. This finding suggests that illnesses with a female preponderance, such as fibromyalgia, chronic fatigue syndrome, or depression, may be misdiagnosed as chronic Lyme disease.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Say again?
How is he differentiating between "Post Lyme Syndrome" and "Chronic Lyme Disease?"
Oh yeah, simply by gender. Now we can add "misogynist" to his list of attributes.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I would like to hear The Worms and his stupid side kicks explanation for what Fibromyalgia and Chronic Fatigue Syndrome really are. There is no mention of what causes these two illnesses in this study. Seems they left that part out.
It's always these two; they never include Lyme specialist in any of their studies. Wonder why they are so afraid to bring in the experts!
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
When will they ever stop talking? I did not think my anxiety could possibly get any worse today. Then I read this and I am jumping out of my skin.
How dare they? I am so sick. We all are. How could they trivialize us? I want to scream.
And why did they release this study now knowing that the hearing to determine if their guidelines should be re-written is coming up at the end of the month?
I am going crazy angry here.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Funny isn't it....how do you study something that doesn't exist?
They claim there is no such thing, yet here they are saying there is....but it is all in women's heads.
I'm so confused....wish they would make up their minds. Oh yeah, it's a researchers perogative to change their minds.....in their world.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
This study is the stupidest thing I have ever seen. I would have flunked my research course in Grad School had I ever tried to present this.
I'm glad they published this. It makes them look totally foolish. They are digging their own grave.
NO ONE is going to take this frivolity seriously. Any moron can see right through this. We should be celebrating.
This is going to be wonderful fodder for the presenters at the IDSA panel hearings.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
posted
You're right, the average moron would see through this. The problem is we are not dealing with AVERAGE morons, we are dealing with physicians and academics. I'm afraid they may not get it.
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
posted
Definitely not the sharpest tools in the shed!!!!
This really makes no sense at all. Not only do they come off sounding like sexist pigs, but they don't tell us anything regarding what might actually be causing all of the symptoms.(oh, thats right, we are women, so it's all in our heads)
Do they even believe in Fibro and CFS etc????I thought they believed that those were all just a bunch of vague symptoms too. If they did believe in them, you would think they would have gone into detail regarding them.
Oh, and the vague symptoms they are talking about....Do they consider my heart murmor that my cardiologist has heard, and my heart palpitations that can visibly be seen, my constant low grade fever etc as vague??????What will they say about those type of symptoms and lets not forget the changes that many Lyme patients are experiencing on their brain spect scans and or MRI's....Can't wait to hear them explain all of that away at the IDSA Panel Hearings. This makes them look as stupid and as desperate as they really are and that is VERY!!!!!
They are digging their grave(side-by-side) by publishing this rubbish.
Cheers to us! We should celebrate their idiocy!!!
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
It amazes me how they talk about CFS as a distinct illness where as lyme is still considered a misguided diagnosis. No bias there...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Aren't they just old as hell anyways?! Isn't it about time for them to keel over?? Oh well, I can dream...
But seriously, I am so sick of these old degenerate pieces of $*** dictating Lyme guidelines and studies and treatment protocals and insurance policies and "scientific" studies and what not. What a joke. How disgusting.
I mean, really! I'm sure all the male impotence drugs quit working for them years ago, but don't take it out on the lymies, or us ladies specifically! Even if their junk did work right who wants crusty, miserable old men like them??
THAT'S what their problem is, I garauntee it! Okay, I'm obviously really aggravated by this. I better stop while I'm ahead before I just go smooth off and get the boot here for vulgarity and inappropriate language.
Uuuuuuuuuuuuugh! Wormser and Shapiro this is for you
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by nomoremuscles: You're right, the average moron would see through this. The problem is we are not dealing with AVERAGE morons, we are dealing with physicians and academics. I'm afraid they may not get it.
Thank you so much for the belly laugh! I saw it comin but it still got me in stitches.
I tried but I couldn't read the abstract past the words "Post Lyme Syndrome."
I just don't have the energy to spend on getting upset right now - I must save it all for my own health. I will not let them take that away from me, no way.
posted
I think that is the first time I have actually seen them try to define the difference between "post-lyme syndrome" (notice they don't say "post-Lyme autoimmune syndrome" anymore) and "chronic Lyme disease".
The way I read it -- if you can prove you had Lyme (CDC criteria only?)and took some antibiotics and are still not well then you have post Lyme syndrome.
If your tests for Lyme were never positive and you have taken some antibiotics and still are not well then you have chronic Lyme.
What?????????
The only positive tests hubby has are one PCR test and 2 recombinant antigen tests (test not done anymore). But those tests don't count according to the IDSA. So I guess acording to the IDSA hubby has chronic Lyme?????
An even more ridiculous aspect of the "study" is comparing only 184 "post-Lyme syndrome" patients and 490 "chronic Lyme" patients to all adult patients who were CDC positive between 2003 and 2005. Including patients from only published studies as a post-lyme or chronic Lyme patient is obviously a ridiculous method for determining the gender of patients fitting the ridiculous definitions discussed above.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Lauren! Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
How moronic that they acknowledge the existence of illnesses that have "no known cause" like fibromyalgia and chronic fatigue syndrome, yet they deny the existence of a chronic bacterial infection.
We need to sponsor a week long retreat...aka camping trip...for all the IDSA members...and I propose that we hold it on Long Island, here in tick infested central PA or maybe near Lyme, CT.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Oh yeah.
I have breasts therefore I must have been misdiagnosed with Lyme.
This is really reaching.....even for Wormser and Shapiro.
I am suprised they didn't include PMS as a possible
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Sorry.
So mad I forgot to send you all hugs.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
These guys are really scaring me honestly. Someone needs to toss them out. They're a disgrace to the profession coming up w/conclusions like this. How can people be so stupid to buy into this stuff (docs)?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Geneal, I am so cracking up right now over your two posts!
Now why would they ever include PMS as a possible diagnosis/explanation? Surely they don't believe that truly exists either, right?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
bettyg
Unregistered
posted
tracy,
please ask cave where this was posted; it doesn't say but shows the date, etc. ... thanks!
good find cave. hugs
under our skin showed their mentality then; this shows it in print NOW! a no brainer even for these 2
take this & that ...
honestly, the only way i see these 2 ever changing their starch opinion is that if their wives, daughters, sons, or grandkids get lyme.
then if they treat them as they have all of you who ever saw them .... they will become chronic like us.
IP: Logged |
It looks like it was originally published in Womens Health. 2009 Jun;18(6):831-4.
I wonder though if this is an old "study" that has just been published. Hard to imagine these guys are still kicking the same old "studies", but then what do I know?
Posts: 822 | From midwest | Registered: Apr 2009
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Chronic persistent delusional denial of chronic persistent disease.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
How do they ever "explain" chronic or lingering effects
Of Lyme in the male species?
Cross gender Lyme?
I just can't help myself.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
I will try to check on some Mens magazine - they might have a different version of the same article for Men. Posts: 822 | From midwest | Registered: Apr 2009
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
Alison Schwarzwalder, MPH , Lyme Disease Research Foundation of Maryland, Lutherville, MD Alison Lydecker, MPH , Department of Epidemiology and Preventive Medicine, University of Maryland Medical School, Baltimore, MD John N. Aucott, MD , Department of Medicine, Johns Hopkins Medical Institutions, Lutherville, MD
Background: Lyme disease is an emerging infectious disease with both early and late manifestations. CDC surveillance shows similar incidence of Lyme disease across gender.
While appropriate early intervention has been shown to influence disease course and presentation of late or chronic symptoms, the impact of gender on this relationship is not well understood.
Objective: To explore gender differences in clinical findings, prior antibiotic treatment and initial misdiagnosis among patients with chronic symptoms and evidence for prior exposure to Lyme disease.
Methods: A consecutive case series of adult patients presenting to a community-based Lyme referral practice in Maryland revealed 88 patients with chronic symptoms and a history of either positive serology or documented objective findings characteristic of Lyme disease. Patient histories were obtained through retrospective chart review and self-report.
Results: Female gender was associated with a 37% decreased risk of having a positive IgG result (RR = 0.63 [0.41-0.96], p=0.03) and women were 37% less likely to meet criteria for a defined late or chronic Lyme-related illness (RR= 0.63 [0.35-1.12], p=0.12).
Prior antibiotic exposure was non-significant, however women were 1.79 times more likely to have been inappropriately prescribed steroids RR= 1.79 [0.78-4.13], p=0.17). Initial physician (RR= 1.64 [0.70-3.85], p=0.25) and patient self-misdiagnosis (RR = 3.66 [0.81-16.7], p=0.09) were more common among women.
Discussion: Although small sample sizes preclude over-generalization, this exploratory analysis highlights possible gender differences in aspects of both appropriate initial intervention and late clinical manifestation. Further analyses to delineate the sociologic and/or biologic determinants of these differences are needed.
Learning Objectives: 1. To identify factors associated with gender among patients with chronic symptoms and evidence for prior exposure to Lyme disease. 2. To recognize the implications of gender differences in initial intervention and late clinical manifestations of Lyme disease.
Presenting author's disclosure statement: Qualified on the content I am responsible for because: I am the study coordinator of a cohort study on Lyme disease and have been actively involved in the design and analysis of this project. Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.
See more of: From Menstruation to Menopause: Women's Health Across the Lifespan See more of: Women's Caucus
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
This is an abstract. It is a few short paragraphs long. If someone wants, they can find the entire article and read it, as I have done. Until you actually know what the article states, in totality, it is premature and juvenile to make such ad hominem attacks.
From the results section (even just from the abstract) it states directly
RESULTS: Patients with chronic Lyme disease were significantly more likely to be female.
This is what the article showed. How this is sexist, racist, or whatever is beyond me. This is what they found by reviewing other published studies. Their conclusion (as listed in the abstract) suggests that some other disease might be misdiagnosed, but this is simply an interpretation of their data.
Simply put, the data appears to be valid, and the study (from reading the whole article) appears to be have performed in a thorough and unbiased manner. Thus, based on this article and others, it appears to be a fact that women are more likely than men to suffer from chronic lyme disease. Every disease has sex differences, so observing these differences should not characterize the observer as "sexist".
Instead of using ad hominem attacks and making fun of the authors sexual organs (how childish is that?) perhaps it is more appropriate to ask, "Why do women develop chronic lyme disease more frequently - by a 3:1 ratio?".
TerryK - thank you for posting another literature based article that proposes an explantation rather than simply attacking these authors like a 2 year old. In your article it states that women are significantly less likely to have a positive IgG result (given a history and symptoms characteristic of lyme).
This suggests to me that women are less likely to develop a positive antibody response, making them less likely to test positive on a western blot (when they do actually have the disease). This means that women are less likely to be treated early in the course of the disease (when it is still curable) because they are less likely than a man to have developed antibodies (and thus less likely to test positive). So, women with lyme disease are not being diagnosed early enough, not being treated when lyme disease is easily curable, and are instead relagated to states of chronic persistant infection.
Posts: 99 | From Bucks County, PA | Registered: Aug 2008
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
Lyme Disease as a Model of Chronic Fatigue Syndrome -----------------------------------------------------------
Sam D, M.D.; Boston University Medical Center The CFS Research Review 2002; 3: 2, 1-4
Gender effects
The effects of gender and host on susceptibility and expression of Lyme disease, CFS and other multi-symptom diseases are also in need of further study.
In all these disorders, women appear to be more affected than men, usually at about 2:1 ratios.
It seems notable that neural cells contain estrogen and progesterone receptors, and that herpes viruses can utilize estrogen receptors to gain access to the reservoir in the cell nucleus.
Treatment of chronic Lyme disease also seems to be gender-dependent to some degree, with men generally having more speedy and complete recoveries compared to women.
Gender relationships are known for a number of infectious diseases, so it would not be surprising that such a relationship exists for chronic Lyme disease, CFS and other multi-symptom disorders.Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Jesse, Thanks for your interpretation. It confirms some of my thoughts about what the article was saying.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Well, how typical of Worm and Spliced-Gene to essentially blame it on "female hysteria".
A round of hysterectomies for everyone, on me!
What a couple of Schmutz's.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Jesse - could you please post a link to the complete article? I can't find it. Thanks!
If one were to give credence to the fact that testing is very bad at detecting lyme disease infection (especially in women) one could easily use the Wormser & Shapiro logic and say this:
CONCLUSIONS: This finding suggests that illnesses with a female preponderance, such as Chronic Lyme Disease may be misdiagnosed as Fibromyalgia, Chronic Fatigue Syndrome, or Depression.
What is Fibromyalgia and Chronic Fatigue Syndrome? A collection of symptoms with no known cause that often improve with treatment for Chronic Lyme Disease.
Wormser and Shapiro are supposed to understand infectious disease. If they were impartial scientists, why not postulate all the possible reasons that there is a skew in gender (especially if what Dr. D states is true)?
Instead, they use this to bolster their tired old mantra that Chronic Lyme disease is a misdiagnosis and should be diagnosed with other syndromes that have the exact same symptoms but no known cause and no effective treatment.
As a woman who was diagnosed with Fibromyalgia and Chronic Fatigue syndrome, I wasted decades of my life being sick with an illness that could have been effectively treated.
After 3 years of treatment, my horrible pain is 70% better and I don't think about killing myself everyday. I have a long way to go before I can reclaim any kind of normal life.
This is where the anger and frustration comes from.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
quote: perhaps it is more appropriate to ask, "Why do women develop chronic lyme disease more frequently - by a 3:1 ratio?".
Yes, it is more appropriate to ask that question. It is a good question. However, Worm and Shap did not ask that since that would imply there is such an entity as chronic lyme.
Their conclusions were entirely different, and was intended to support their delusion/hope that chronic lyme is really CFS etc. and therefore does not really exist. The rationale was based on gender occurrance, and still has bands of error around their statistics. The rationale also is based on their set of symptoms, which most here would disagree with. Their definition: if you cant see it, it aint lyme.
(edit to delete the p level comment...I based conclusions on the wrong paragraph.)
twoangie
Frequent Contributor (1K+ posts)
Member # 1636
posted
I don't have time to read all the comments but I did see that the Worms article was posted so I wanted to respond. I can't stand the Worm and his group. They will always try to slant things in the direction that benefits them best.
I'm copying over here a recent article on Lyme Disease and arthritis. While it is not fibromyalgia or chronic fatigue it does appear to show that there is something different going on in the 'chronic' Lyme patient with arthritis than the average arthritis patient. I don't completely understand this article but it may be useful somehow for some of you folks who are so good at writing rebuttals.
The fact the disease can be chronic enough to destroy joints to the degree they should be removed and replaced - at a rate greater than general arthritis - doesn't seem to imply (to me) that patients were cured and something else is going one esp since the patients who had been infected with Lyme were observed vs patients with other diseases and controls.
Cheers,
Angie
Scand J Infect Dis. 2009 Jun 9:1-6. [Epub ahead of print]
Activity of lysosomal exoglycosidases in serum and synovial fluid in patients with chronic Lyme and rheumatoid arthritis.
Pancewicz S, Popko J, Rutkowski R, Knaś M, Grygorczuk S, Guszczyn T, Bruczko M, Szajda S, Zajkowska J, Kondrusik M, Sierakowski S, Zwierz K.
From the Departments of Infectious Diseases and Neuroinfections.
Lysosomal exoglycosidases participate in the destruction of the articular cartilage by cleaving glycoside bonds in glycoproteins and proteoglycans. The aim of the study was to determine the activity of exoglycosidases: hexosaminidase, beta-glucuronidase, beta-galactosidase, alpha-mannosidase and alpha-fucosidase in serum and synovial fluid of patients with Lyme and rheumatoid arthritis.
The study group consisted of 10 patients with chronic Lyme arthritis (age 18-74 y), 13 with rheumatoid arthritis (age 32-70 y) and 10 with juvenile idiopathic arthritis (age 8-17 y). The control group consisted of 9 healthy volunteers (age 24-62 y).
The activity of the exoglycosidases was determined with the p-nitrophenyl derivatives of sugars as substrates. A significant increase of the activity of all the exoglycosidases in serum and in synovial fluid of the patients with different forms of arthritis was found.
The ratio of synovial fluid/serum activity of exoglycosidases was above 2.0 in LA but not in JIA and RA patients.
As the main source of exoglycosidases in the joint is the synovial membrane, this result supports the appropriateness of therapeutic synovectomy in chronic Lyme arthritis with knee effusion. The serum activity of hexosaminidase may be used in monitoring the course of Lyme arthritis and the efficiency of treatment.
PMID: 19513935 [PubMed - as supplied by publisher
Synovectomy: Surgical removal of a part of synovial membrane of a synovial joint. It is one of the treatment options for certain diseases involving the synovium like: * Severe Rheumatoid arthritis * Hemarthrosis * Synovial osteochondromatosis * Synovial chondromatosis * Pigmented villonodular synovitis
-------------------- I surf to serve! Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
| IP: Logged |
twoangie
Frequent Contributor (1K+ posts)
Member # 1636
posted
...and, by the way, if your joints are literally being slowly eaten away...wouldn't this be very easy proof to explain why so many of us suffer with so much pain? I can't make it from one day to the next without Fish Oil and Boswellia. I also recently added Ibuprofen. Anyway, just a thought...
Angie
-------------------- I surf to serve! Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
| IP: Logged |
bettyg
Unregistered
posted
jesse, what is your background .... what did you do for work PRE-lyme? thanks ...
IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
He said he had a medical background before
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
I am sorry, but you seem so upset with some of the posts here.
I think what you need to keep in mind is that that the anger and so called attacks stem from the fact that we are not just merely talking or discussing this one particular abstract, but rather many of us who are here have for years looked at the whole picture in totality.(there is far more than just this one abstract)
Wormser and Shapiro have written and verbally commented time and time again. This is not the first time that they have slanted studies to suit their own personal needs at the cost of many who reamain ill with Lyme and co-infections.
If you research their whole past by putting together a paper trail of their thoughts and research on Lyme and company, you will find that they have consistently contradicted themselves at the cost of the many of us who remain ill.
I totally agree that if there were a pre-dominance for woman to contract Lyme Disease, that would be of importance and should be studied. But, you need to understand that these two have been known to poo-poo anything and everything that has not fit their ideal mold of what Lyme is and they have done everything in their power to make the society as a whole believe that Lyme is overdiagnosed.
There are many fine doctors and scientists including the CDC that believe that Lyme is underdiagnosed.
Please know that this is a support board and a place where we get together to blow off steam too, There is so much more that meets the eye than just the mere words that were in this abstract.
I can also tell you first hand that I have been personally attacked by doctors because of my sex. It has not been easy being a female and trying to get a proper diagnosis. We still live in a sexist world whether we like it or not. That is not to say that men with this illness are always treated fairly.
I will say that I sincerely believe that if I had been a male it would not have taken me so long to get a proper diagnosis.
I will aslo go out on a limb and state that I also believe many men are taken more seriously and are in general, but not always diagnosed with Lyme Disease properly earlier on, therefore they are able to rid themselves of Lyme quicker and with less issues.
Please try to understand where so many of us are coming from. Again, this anger does not "just" stem from this one abstract.
Hope this helps,
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
No I think we got it right. I did read it all sadly. This says save the men. Women are just misdiagnosed without ever having proof of ever having lyme disease and only have fibromyla, CFS or just depressed. Feed them to the dogs!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
The best way to respond to fools is to ignore them.
They have proven their incompetence in the field of bacteriology. No serious bacteriologist would even give them the time of day.
Spend time researching people who know what they are doing and do not have an agenda.
Do not waste energy on them, they have nothing to offer anyone, except there special interest groups.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Pinelady - can you please provide a link to the whole study?
It has been known for a long time that the chronic lyme, fibromyalgia and CFID patient population is skewed towards females.
It would be good if researchers used that information to help find a more effective treatment.
Thanks, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
| IP: Logged |
Shosty
Unregistered
posted
Noone has mentioned lupus, but that also has a preponderance of female sufferers. Hormones and hormone receptors clearly play a role in a lot of these illnesses.
Steere et al have often written about autoimmunity following Lyme, as have some very well respected LLMD's. I personally like to read all opinions, from all directions, when trying to decide what is going on with my family's health. Steere's idea of autoimmunity post-Lyme has some merit, and would mean that some of us should get off antibiotics after, perhaps, a couple of years.
On the other hand, it may well be that persistent Lyme is the reason for continuing symptoms, and that for whatever complex reason, certain people can't respond to meds.
This situation is analogous to strep, which can cause an autoimmune illness (rheumatic fever) in susceptible individuals, but not in others.
I think that Jesse makes some important points about the tone of posts here. My hope always is that this community have more credibility, and the way people express themselves here honestly scares me on that count.
The "Lyme wars" feature extremists on BOTH sides. The posts here are extreme. How can we expect courtesy and respect when we write about the studies and writings of other MD's and researchers, in such a "childish" way?
We need to understand that there is merit in studies like this, and in other studies by Steere at al. I don't agree with their dismissal of chronic Lyme, but if anyone actually reads their stuff, they don't deny that people are ill. They just don't believe that antibiotics are the answer, because they believe the illness is an autoimmune one, triggered by Lyme, and not a persistent bacterial infection.
I took antibiotics for 6 years, and it messed up my body pretty badly. Now, I have tests for lupus that are positive (including skin biopsy). I got off antibiotics, healed my gut, and feel a lot better than I did on the meds.
Also, during my illness, I was going through hormonal transitions. Men's don't have these ups and downs and life passages with their hormones.
So, to me, there is some merit in the point of view of these researchers.
One more thing. Someone wrote "just depression." Depression is a real illness, and an MD can diagnose it without being sexist. Hormones and autoimmunty and infections can all contribute to depression.
Anyway, let's act like mature, well-versed, reasonable, open-minded, intelligent people and maybe someone will start listening to us.
IP: Logged |
quote:Originally posted by Shosty: Anyway, let's act like mature, well-versed, reasonable, open-minded, intelligent people and maybe someone will start listening to us.
I disagree.
Lyme activists have been talking like mature, well-versed, reasonable, open-minded, intelligent people for decades. And nobody has listened. Being nice and civil sounds like a wonderful thing, and in a perfect world it would be, but in the Lyme world we currently inhabit the enemy will continue to run us over like dogs. This IS a war. The other side has known this form the start, and has acted accordingly. In order to be noticed we need to play equally rough.
There is a place for measured dialog. And there is a place for something rougher, which should, if it is done properly, help to redefine the boundaries of the fight.
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
posted
"This finding suggests that illnesses with a female preponderance, such as fibromyalgia, chronic fatigue syndrome, or depression, may be misdiagnosed as chronic Lyme disease"
Geez, silly me, I thought it was the other way around: Chronic Lyme Disease is often MIS-diagnosed as fibromyalgia, CFS or depression.
Regardless of the entirety of the article, all this particular statement does is imply that women, weak beings that we apparently are, are prone to ill-defined disorders with no apparent cause. Not only is that implication offensive, it is damaging and dangerous. It discredits the legitimacy of a very serious, chronic disease, regardless of whether it affects more women than men.
Perhaps the reason women are diagnosed with fibromyalgia and CFS more often is that women are more likely to seek medical help (from physicians who are clueless about Lyme and coinfections, thanks to the IDSA).
And, historically, haven't women been marginalized enough by the medical profession? Think about it: depression, nerves, breakdown, PMS, menopause. It's time this silliness stopped.
Women are strong. Women are powerful. Women are in the trenches fighting for their health and the health of their families. And it will be women who ultimately change the system.
I am by no means implying that men aren't powerful, strong and fighting. I am saying this because from what I've experienced, the women are primarily the ones dealing with the doctors, the schools and the insurance companies.
It does appear that these so-called physicians have misogynistic tendencies. Perhaps that's because they've encountered more sick women toting along their sick kids to be evaluated.
Lyme disease, as opposed to fibro and CFS, has a known cause that Wormser, et al, are acutely aware of. Too bad they've been sitting in their ivory towers with only their conflicts-of-interest keeping them company.
Think of the absurdity of "post-lyme syndrome" If a diabetic's sugar doesn't come down to normal levels after 2 weeks of medication, is he told he has "post-diabetic syndrome?" If a cancer patient's tumor is not eradicated after weeks of chemo, is she told she has "post-cancer syndrome?"
OF COURSE NOT!
There is no logic whatsoever to this "post lyme disease syndrome" nonsense. If you are still having symptoms after being treated for Lyme Disease, well then, doesn't it make sense that you haven't been treated long enough or adequately enough?? Or perhaps you haven't been treated for a co-infection?
A 5th grader could figure that one out. Why can't IDSA? Oh, I forgot...it's those darn conflicts-of-interest.
Posts: 214 | From where ticks flourish | Registered: Dec 2007
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
NMM, I couldn't agree with you more! And Jesse as someone else pointed out, this is a SUPPORT forum - a place where we can blow off steam.
And not to be redundant, but as others have stated these are the same two who have famously ridiculed chronic Lyme disease for YEARS. The fact is that they hold a lot of clout within the medical profession and with Infectious Disease docs in particular.
As a result of their so-called Lyme "treatment guidelines" and their oh-so-flawed scientific studies and their absolute refusal to bend on the issue of chronic Lyme, hunreds of thousands of people including myself are living in a state of abject misery, poor health and extreme debilitation. Many, many more have senselessly lost their lives.
Most of us have lost our homes, our jobs, and our friends....and yes, this can be blamed on a handful of people. A few people at the "top".
So I'll tell you what Jesse, I don't have to give them the benefit of the doubt or treat them with respect, okay? They don't DESERVE it!
I'm 29 years old and I've been horribly ill for 4 years! I spend 99% of my time on my couch or in my bed. I have spent EVERY dime I have on treatment. I cannot have children. My list goes on and on, as do most others here, but I'll spare you.
So pardon me if I'm acting "premature", "childish", "juvenile" and like a "two year old". Part of my rant was just my silly sense of humor shining through, and I'm not apologising for it. At least I still have a sense of humor, which is more than I can say for some people!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
twoangie
Frequent Contributor (1K+ posts)
Member # 1636
posted
The bottom line of all of this is that Wormser and his group have a vested financial interest in the Lyme Disease community. Otherwise, they would find something else to research. They are not liked here and they contribute only faulty, so-called studies that serve to deny treatment to more people than they will ever help.
I have no doubt that insurance companies pay to have things like this published because it enables them to limit treatement - keeping their costs far lower than they should be. I don't know the answer to how many antibiotics anyone needs, I took them for years and I've been off of them for years, but I do know that we need more effective treatments and acknowledgements of persistence, not pseudoscience from men who are paid off by insurance companies.
Whether people such as this are paid directly or take bribes under the table to publish information that negatively affects the health of others, it needs to end. That's just MY opinion, of course.
Angie
-------------------- I surf to serve! Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
| IP: Logged |
Shosty
Unregistered
posted
These rants are exactly why we are treated the way we are, as if we are mentally ill. Please, calm down and be effective, not emotional.
Someone mentioned diabetes and how the idea of post-diabetes would be ludicrous. This comparison is completely ridiculous. At least for type 1, which is a result of the complete destruction of beta cells in the pancreas.
In fact, there is a possible parallel for Lyme with type 1 diabetes, which many believe can be triggered by viruses such as coxsackie. Type 1 diabetes, which is an autoimmune illness triggered by the infection, continues long after the active virus. So, in fact, some type 1 diabetes could actually be called "post-cocksackie", in the same way that there may be "post-Lyme" autoimmune problems.
I have no idea of the truth about Lyme. I believe in listening to and reading about everyone's research and ideas. I have frequently written newspapers asking the "other camp" to be more reasonable. As I said, BOTH sides are contributing to the polarization here.
Folks, yes doctors are misogynistic, especially toward mothers. A good way to continue that is to act angry and hysterical.
Lyme patients feel uniquely victimized but, believe me, patients with many, many medical problems are equally victimized. The controversies with Lyme are mirrored by controversies within just about every medical affliction, and passions run high in those subcultures too.
I went to a hearing a few years back in which Lyme patients were overly dramatic, angry, and completely ineffective. As a fellow Lyme sufferer, I was embarrassed and left at the end in despair. Where are the Lyme moderates?
The Juvenile Diabetes Research Foundation, the Lupus Foundation, migraine organizations, cancer organizations, endometriosis organizations, etc. etc. have effective advocacy and fundraising. Lyme just doesn't have any equivalent, and people on here have no power at all to make change.
The ranting is a symptom of powerlessness, but it also continues the powerlessness.
IP: Logged |
twoangie
Frequent Contributor (1K+ posts)
Member # 1636
posted
Shosty, I don't come here very often but everyone here has a right to be VERY upset about the recently published research. It is absolutely nothing to be taken lightly. This trash will affect the care they receive from their doctors and the payments by their insurance oompanies both for medical treatment and disability income. This "research" was published with one agenda in mind - restricted care and benefits.
The Lyme community has made as much progress as they have over the years because they are ACTIVE not passive. I don't know you and I don't know exactly what your agenda is but, in coming here and telling people to be passive and accepting because of very obviously bogus research, I can't help but suspect your motives. Progress has been made BECAUSE Lyme patients did not take being victimized laying down! They should not do so now either.
By the way, if the patients want to vent and rant here, let them! It has nothing to do with you and if it offends you to read their cries of despair then skip over the ones you don't want to read or skip it altogether. This is their board and that it why it is here, so they have an outlet. This is not a formal debate or a hearing. They are welcome to write how they feel here.
Angie
-------------------- I surf to serve! Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
There were 154.7 million women in the US as of Oct. 1, 2008.
There were 150.6 men.
Statistically speaking, the likelyhood of more women
Getting Lyme then men makes sense. (Duh!)
There are more women than men. Period.
So, based on strictly numbers and the fact there are
Four million more women than men in the US,
The probability of women getting all types of diseases
Is higher then the probability of men.
Maybe with the exception of prostate specific issues.
Think about it.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Sorry, but these rants are not why we are treated the way we are. We are treated the way we are b/c of biased studies, conflicts of interest and greedy insurance companies. Period.
If I were a robot the advice to be effective rather than emotional would be perfect. Unfortunately I'm human, so occasionaly I fall victim to ranting.
If I were in a courtroom in a trial or hearing setting, I would act accordingly and behave myself. Since I'm not, and we're all communicating on a Lyme support forum I think a little ranting is ok - and certainly healthy.
Where else can we rant? Who else will listen?
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Northstar - you state: "The John Hopkins study is not statistically significant (need p =0.01 or p=0.05)but the results were interesting, especially about the use of steroids with female participants."
Not sure which conclusion you are saying is not statistically significant but the p value of .03 is less than or equal to .05 so should be considered statistically significant.
"Results: Female gender was associated with a 37% decreased risk of having a positive IgG result (RR = 0.63 [0.41-0.96], p=0.03) and women were 37% less likely to meet criteria for a defined late or chronic Lyme-related illness (RR= 0.63 [0.35-1.12], p=0.12)."
If you were using a p value of .01, then it would not be considered significant (the data could not be explained by chance).
From what I can tell, p values are somewhat contested in medical research and while I don't know a lot about statistics, the classes I have had made it pretty clear that they can easily be incorrect.
I'm interested in your comments. Any tools that can be used to help us understand the data is much appreciated.
Thanks, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
quote:"Chronic Lyme disease" is a vaguely defined term that has been applied to patients with unexplained prolonged subjective symptoms, whether or not there was or is evidence of B. burgdorferi infection.
According to this, one can have EVIDENCE of bb, have lyme symptoms, but now the symptoms are "unexplained".
I would imagine that they are saying one can be two tier positive, and if one had 4 weeks of abx, with continuing symptoms, i.e. serological and clinical evidence, then it is not lyme.
Why is it not lyme? Because they had 4 weeks of abx. So suddenly the same serological evidence and clinical evidence to originally diagnose, now is used to negate the diagnosis and pronounce the patient lyme free. Voila! With a key stroke they are cured!
quote: This finding suggests that illnesses with a female preponderance, such as fibromyalgia, chronic fatigue syndrome, or depression, may be misdiagnosed as chronic Lyme disease.
And vice versa: lyme can be misdiagnosed as fm, cfs, depression (that is their only subjective symptom?)
The correlation has to be bidirectional. Thus, chronic lyme is misdiagnosed as cfs, etc.
If it cannot be bi-directional, i.e.if chronic lyme is a non-entity, then the entire study, and definition, is invalid. They have to admit, with this statement, that chronic lyme exists.
Also, why choose fms, cfs, depression? I am sure there are numerous other vague syndromes that could be included, and other misdiagnosed actual physical problems where there is a very slight majority of females.
Why do they choose these? Because there is no serological way to support these syndrome diagnoses, and they are given via exclusion/differential and clinical rationale. And they cross out chronic lyme because it does not exist in their opinion.
Regarding poking fun/mocking: I do recall a newspaper article with the IDSA entomologist (guideline writer), who, on record, called ILADS drs. derogatory names, such as wacko, buffoon, murderer, etc. Now that was worse than what is printed here, and considering the source is a researcher......well!
At least the people here do it with wit, humor, and style! I did not read these above comments as ranting.
The auto immune theory is a carcass left dessicated on the path of history. They could not get their theory to work. They also did not include L forms and cysts as a possible source of antigenic stimulus.
This study and conclusions cry out for the comments seen above.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
What about those of us who for months and years DO have positive lyme tests, positive co infections, etc....despite antibiotics? And have very specific and measurable symptoms, like neuropathy, etc?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Tracy, we would be suffering auto-immune patients conned into believing a false test result from the quack Igenix Labs who always produce unreproducable test findings (not my idea - but what Wormser may say). Of course, with a big smile saying it's not good science.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Shosty
Unregistered
posted
I do not believe anyone should be passive when dealing with an illness. The health advocacy groups that I mentioned are anything but passive. However, their efforts are very professional, and I have not seen anything similarly effective for Lyme.
Of course the "other side" is similarly out of control at times, using terms like "wacko" etc., as someone said.
The point I try to make, whether writing the papers, attending meetings, or occasionally coming on here, is that both sides do have some points worth considering, and the polarization of the two sides is only hurting patients in the long run.
The kind of unified front against a common enemy seen here, can breed cult-like behavior, with black and white positions (good versus evil) that do not tolerate any opinions that fall in a grayer area.
The answers to Lyme may very well fall in that gray area.
IP: Logged |
quote:Originally posted by Tracy9: What about those of us who for months and years DO have positive lyme tests, positive co infections, etc....despite antibiotics? And have very specific and measurable symptoms, like neuropathy, etc?
What are we?
Screwed!
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
quote:Originally posted by Shosty: The answers to Lyme may very well fall in that gray area.
The answers, in my opinion, are definitely going to fall into the gray area, likely many gray areas. But anyone who thinks playing nice with these guys is going to get us anywhere has not been paying attention over the years. They have no interest in anything but what they spew out over and over, year after year. And why should they? -- they don't have to, they make the rules. They own the game.
This whole concept that "if we were just rational and willing to listen, then they would open a productive dialog" is very naive.
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
While I do respect your position Shosty and do not
Prematurely dismiss any research without reading it,
I am living proof of "Chronic Lyme".
I don't need a study that acknowledges, defines, defends or defames
What every day of my life is and what I potentially
Look forward to dealing with for the rest of my life.
In all situations there is the potential for "gray" areas.
I am against reading research that has so many
Potential threats to validity and having that
Information used to generally categorize an outcome.
That is biased research.
I don't think we are ranting and raving as so much
As we are frustrated with the lack of empirical scientific
Data the IDSA and associates use to dismiss the presence
Of Chronic Lyme disease and this is one place where
We can readily express our opinions without censure.
Hopefully.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
Shosty, I mean no disrespect to you or others who have varying opinions, but...
REGARDING YOUR QUOTE: "These rants are exactly why we are treated the way we are, as if we are mentally ill. Please, calm down and be effective, not emotional."
Your statement is way off the mark. It was before I started ranting and expressing my opinion that I was ignored and told I was crazy. They crammed those kinds of remarks down my throat for five years(this was done by countless doctors, specialists etc...)
It was not until the day that I stood up for my rights as a person and patient that I was able to get a good doctor to listen and respect me. I had to be vocal(very vocal) and demanding(very demanding). Of course I did this in a tactful, but forceful manner.
I have learned to take health care matters into my own hands. I come on this board to listen with open ears, learn from the abstracts, studies and other materials that have been put on here and yes, I do comment "my" opinions when I feel like it.
I don't consider stating ones feelings towards some of the so called leaders(Wormser and Shapiro) of our misery to be a rant.
Keep in mind that so much of what mainstream doctors will perscribe and insurance will cover has been based on their flawed opinions and slanted study's(this is not only a costly illness, but a debilitating one too). If you want to believe their validity then go ahead, but respect our right to disagree.
Like I stated earlier, it's not just this one abstract that people are taking objection to, but rather years and years of nonsense they have spewed. Are you familiar with their work? Do you know what their believes are about Lyme Disease? I only ask, because I believe if you truly understood that than you would better understand why we feel this way and why I will never trust a word they say.
How could you or anyone else for that matter expect us, especially on a "support" forum to think we would sit idle and not comment openly and honestly??????
Do you think that Shaprio and Wormser sit together all polite with folded hands and say nice things about us? I think not.
If you know anything at all about them, you would know that they started this war(yes this is a war, whether we like it or not) many years ago when they started contradicting themsleves in order to advance their own personal agenda and protect their pride. Which it seems they have none of.
People on this support board care about one another very deeply and it's our place to come. They(Shaprio and Wormser) don't know what we are writing here, unless of course they are among us in which case they can see how we honestly feel about them and perhaps they will learn a thing or two about our disease.
BTW, We are not powerless because we comment! In my case It's because I have so called complained, ranted, voiced an opinion that I finally got a proper diagnosis and have helped multiple people find out that their CFS, FM and MS was actually caused by Lyme.(Wormser and Shaprio would like us to believe otherwise)
I truly hope this helps you to understand our position.
PS One of my little mottos is: WELL BEHAVED WOMAN RARELY MAKE HISTORY!!!!!
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
| IP: Logged |
posted
To get respect you must earn respect. Making fun of a person's genitals and mocking their impotence...that is hardly the impression we want to give.
"I mean, really! I'm sure all the male impotence drugs quit working for them years ago, but don't take it out on the lymies, or us ladies specifically! Even if their junk did work right who wants crusty, miserable old men like them??"
Some argue...they haven't shown us respect, why should we show them any? But, beyond your personal feelings for the researchers in question, there is a general perception in the community that patients with chronic lyme disease are "wackos." I am part of your group, and do everything I can to educate people about the disease. I teach people about lyme, inform them, give them articles to read, and discuss the research that supports our cause.
But, it is posts like in this thread that reinforce the negative attitudes that so many, not in the medical community, but in society feel towards us.
As some have already stated, this is a lyme disease forum...a support group. We are all frustrated...all sick...all desperate to get better and angry at how some have treated us. But, we are adults. If we are to educate and inform...if we are to change how patients with lyme are treated...if we are to alter the perception of the chronic lyme disease "wacko", we must be sure that our statements are scientifically valid and not resort to name-calling or other childish behavior.
Posts: 99 | From Bucks County, PA | Registered: Aug 2008
| IP: Logged |
posted
It is great we have leaders who are professional and base their efforts on science. At the same time, I think some of us need to make more noise.
We will never get respect from the Wormser crowd by by quietly suffering.
If the review of the IDSA guidelines is not productive, then the valid scientific arguments would have failed.
I consider any ranting above to be healthy and a way to help us survive.
Posts: 158 | From Ecuador | Registered: Apr 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Tweedle Dee and Tweedle dumb. This hasn't been about science for a long time. This data is no different.
It's intention is clear. The expectation is that since autoimmune disorders have a tendency to affect women more than men, as well as disorders with unknown etiologies like Chronic Fatigue Syndrome, Lupus, Fibromyalgia, MS -- that if they can draw a parallel it'll reinforce the consideration of "Chronic Lyme Disease" -- which you'll notice was put into quotes as an inflammatory gesture -- is nothing more than a "poorly defined" vague set of symptoms that have nothing to do with Lyme disease, but rather are of a psychological/psychiatric nature, and or perhaps an inflammatory condition just like the rest of the poorly understood ailments that afflict women.
Thus, it's not post-lyme, it's not Lyme at all! Do you understand what they're doing yet? Wake up.
If they can get the academic and medical community to think about Chronic Lyme Disease in this context, it shifts the parameters of the debate a little in their favor.
It's one more published study -- whether scientifically sound or not -- that is now opposing the real truth. Remember, "facts" can be used to obscure Truth. Some lawyers are great at it (If the glove don't fit, then you must acquit), and so are Wormser and Shapiro.
These two aren't practicing science. They're beating a dead horse called Dogma.
They aren't interested in getting you well or debating you with fact. They aren't interested in finding the truth. They're interested in their reputations and attempting to keep buried the lies and secrets they've built each lie upon.
If they were interested in truth, they wouldn't have dismissed the only IDSA member from their panel who dissented in creating the 2000 Lyme Disease Guidelines.
Dr. D, professor of Infectious Disease and Microbiology out of Boston (The IDSA member who was dismissed) said that given the wide variety of evidence suggesting that Chronic Infection may or may not exist -- as long as there is scientific disagreement, then treatment guidelines should not be created as though that disagreement is absent.
The guidelines should make reference to that open-discussion and that it is up to the physician to decide when to discontinue antibiotic (or antimicrobial) therapies, just as suggested for many years in respect to HIV, Tuberculosis etc.
Dr. D told Dr. Wormser this. Dr. D told me directly to my face that when he said this, Dr. Wormser convened the panel a short time after Dr. D provided his input (Without informing Dr. D that the panel was meeting again, thus he never made it to the meeting to sign off about his concerns) and the panel left everything out that Dr. D suggested and published the guidelines, limiting treatment to 2 weeks, a maximum of 4. All evidence to the contrary was suppressed and not referenced, all opinions or dissent, ignored.
If you want to play this game, you better start learning to lie, sneak, and sharpen your political pencil, because it's the only way to win this war. It's the only way we've been able to cross enemy lines to get bills passed and to side step the insurance companies.
This isn't science, it's human lives at stake -- kids dying, parents stripped financially and buried in debt -- marriages broken, lives torn apart, and suffering immeasurable .
Get with the program. We either use guerrilla warfare as we've been doing this last two years or we stand in lines marching towards the enemy who will inevitably shoot all of us if they can. We all know how that worked for the British.
Human beings have "anger" as an emotion for a reason. It's a signal to alert the individual and others surrounding them that a threat is present. You're god damn right people here are angry. The threat and danger is real.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
oh yeah, heard it all before.
"overweight, white woman, under stress, need outlet, you need to exercise."
if i was a damn man they wouldn't say this _____t,.
oh yes, it all comes from MALE physicians...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Ok. I give up. I was JOKING. Jeeze. Obviously I don't know anything about their genitals and I don't care to know.
My original post wasn't about educating or informing. I'm not on a forum full of scientists or doctors or researchers - if I was then I would act accordingly.
Anyways, I'm done defending myself and my comments. If they offended you or anyone else, I'm sorry.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Okay, Metallic...will you marry me?
Seriously...when I read your post my heart was all aflutter. Wow, you have a way with words!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lauren, your comments don't offend me. I think you are hilarious and we can use a few laughs around here.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Awww Terri
We can use a few laughs for sure...if it weren't for humor I don't know where I'd be.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
bettyg
Unregistered
posted
here we go again ...
i don't like the name-calling either; we can accomplish this without it in my humble opinion. i've been attacked on this board and didn't like the name-calling, etc.
idsa folks MONITOR this board daily just like us members! they are aware of every move we make; so don't kid yourselves anyone.
amazing what this post created that cave found and tracey posted ....
let's use our energy...positive & negative to: ************************************************
1. calling/emailng CONN'S. GOV. RELL TO SIGN THEIR LYME DISEASE BILL.
2. calling/emailing each of congress's house/reps representing OUR STATES who have NOT SIGNED AS CO-SPONSORS YET.
let's take out our frustrations in this way making a difference for ALL of us.
3. promoting UNDER OUR SKIN documentary on the BIG SCREEN in the select cities shown to date.
setting up tables outside the movies and hand out brochures, etc. to educate folks.
july 4th is coming ... set up booths; march in a parade, etc. if you're like me, you can't walk far; walk 1 block; someone replace you the next block along the route.
thanks for listening to my 4 cents worth...
now let's help those needing drs.....go to seeking drs. area and look for posts for YOUR STATE as you know the most current llmds than me/others w/lists and no personal involvement there ok.
let's go to medical and help answer questions from newbies/oldies needing help.
hugs to all...let's move on instead of beating a dead horse to death ok please xox
IP: Logged |
posted
I had a hard time reading and understanding the "study" because my uterus kept wandering around and distracting me.
This "study" is strikingly similar to ones I read for a research paper ~12 years ago on MCS (multiple chemical sensitivity).
If you go back 10 or 15 years, you can find samples of idiocy like this (and talk about lousy pseudo-science! I could tell from their "objective" what their bias was) about MCS and CFS.
And when I saw their names, I hadn't recognized them as IDSA stooges, so I was actually hoping for something worthwhile for a nanosecond. Oh Lyme brain, sometimes you are a blessing!
It's ironic, because now -- due to massive lobbying over decades -- CFIDS is finally getting the respect and understanding it deserves, instead of being called "the Yuppie flu" and even MCS is more widely recognized than 10 years ago and not *quite* as likely to be attributed to "female hysteria" . . .
and YET, here is the same old garbage about Lyme, trying to somehow make it sound less blatantly biased (and yes, sexist!) by referring to CFIDS as a valid illness.
Whenever I was doing education on CFIDS or MCS (because -- lucky me -- I had CFIDS and MCS, before I got Lyme & co) back in the day, I used the example of how many, many illnesses, especially those that predominantly affect women, are initially treated as hysteria.
MS is a good example. Until brain imaging technology, MS was treated as a psych disorder.
I have actually read "studies" where the authors used the term "hysteria," to discuss the disproportionate number of women vs. men dx with MCS.
I wish my article that discussed this was still online, but the journal that published it folded.
Anyway, I think this is -- as some have mentioned -- just excellent fodder for showing thinking people how politically motivated the crusaders against recognition of Lyme are.
Also, I just love it when they refer to "subjective symptoms" of people who don't have evidence of Lyme cuz I have a rash where the engorged deer tick nymph bit me, swollen joints, cardiac abnormalities visible on echocardiogram, abnormal heart rhythm and tachycardia, to name a few.
And I tested positive for Lyme and babs 1.5 years post-tick bite (which does sorta suggest "chronic," eh?). So, which of these is subjective and vague and not evidence-based?
But, I heard the same thing about my CFIDS dx (swollen lymph nodes, multiple canker sores, swollen/red tonsils and throat, tachycardia, abnormal BP [low], fever for months, etc.) as I did for MCS (vomiting post-exposure, blood pressure spikes during exposure, and pretty much all the CFIDS sx, too, during- or post-exposure).
So, maybe these two dudes are just enthusiastic organic gardeners:
They're taking a lot of old *manure* and recycling it -- thinking after it's composted long enough, it won't stink.
I'd like to grow some pretty flowers out of it, cuz after all, I'm a girl, and that's the kind of thing we like to do, when we're not being depressed or hysterical.
Oh yeah, and anyone who disagrees with me should grow a pair . . . of ovaries. ;-b
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
| IP: Logged |
You both said it better than I ever could. Thank you!
Suthrngrl,
I agree with you too! We can all use a few laughs around here. This is a very serious illness and interjecting humor is necessary for self preservation.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Okay Sharon,
I think you win the award for wittiest answer.....I am totally cracking up here!
I LOVE:
"I had a hard time reading and understanding the "study" because my uterus kept wandering around and distracting me."
AND....
"So, maybe these two dudes are just enthusiastic organic gardeners:
They're taking a lot of old *manure* and recycling it -- thinking after it's composted long enough, it won't stink.
I'd like to grow some pretty flowers out of it, cuz after all, I'm a girl, and that's the kind of thing we like to do, when we're not being depressed or hysterical.
Oh yeah, and anyone who disagrees with me should grow a pair . . . of ovaries. ;-b"
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I read this study this morning and had the dear in the headlights look on my face.
These are supposed to be respectable findings? ARe there doctors that would actually read this study and buy these results at face value?
My experience would tell me that, yes, the American public is harmed daily by such robotic physicians with no intellectual sense of scientific inquiry.
Sad...very sad.
Mary in Switzerland
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
To top it off this was compiled and wrote with GRANT MONEY. Go figure.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Womens Health. 2009 Jun;18(6):831-4. Implications of gender in chronic Lyme disease. Wormser GP, Shapiro ED.
TerryK simply copy and paste in Google search box
and everything that has been published will come up
and where it was published.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[cussing]](graemlins/cussing.gif)
![[rant]](graemlins/rant.gif)
![[Big Grin]](biggrin.gif)
![[puke]](graemlins/puke.gif)
![[Mad]](mad.gif)
![[Smile]](smile.gif)
hugs![[toilet]](graemlins/toilet.gif)
![[tsk]](graemlins/tsk.gif)
![[loco]](graemlins/loco.gif)
![[dizzy]](graemlins/dizzy.gif)
![[kiss]](graemlins/kissing.gif)
![[group hug]](graemlins/grouphug.gif)
![[confused]](graemlins/confused.gif)
here we go again ...
Printer-friendly view of this topic