Wednesday, December 24, 2008
Are there specific gender responses in Lyme disease?
This is speculative and not based on any study. Symptomatic Lyme disease appears to be more common in women than men. However, when men develop Lyme disease they are frequently sicker and more difficult to treat. Women have a more robust immune response. In fact, autoimmune disorders are about twice as common in women as men. The flip side of the coin is that men are more susceptible to infection. So when men do finally present with Lyme, it may be more severe and more widely disseminated. Women may have significant symptoms far earlier in the course of the disease, due to reactive immune systems, bringing them to treatment much earlier. Many of my quick responders to treatment are women. A confounding issue is that in general, women utilize health care services to a much greater extent than men. Men tend to ignore symptoms until they are pretty far down the road. This is an observation. I wouldn't hang my hat on it. But is an area of speculation worth looking into at some point.
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Can you give some examples? You saw with men Lyme symptoms are more severe. Example please. Men do not see doctors as regularly as women; that's a fact. Nor will they go until a symptom gets to the point where they cannot tolerate the pain/fatigue or whatever. I work with virtually all men. We work in the forested areas of Maryland. Two others are symptomatic and are being treated. However, every summer a few (two or three men)show me their rash but they do not go to the doctor unless they have symptoms despite the number of people in the office who have been severely sick. I plead with them and offer doxy. No way they say, I'll be fine. Possibly they do wait longer to come in and the disease is at a much heavier load. As mentioned, I witness it every summer and I'm just in awe of it. We have posters up and many have been real sick to include me but the idea that they will not get sick is imbedded in their heads and some do and some don't- not yet.
Don't women get autoimmune disorders during certain ages, not after menopause? Possibly there is a hormonal connection. I would like to know if you think Lyme patients will soon be taking immune regulator drugs as AIDS patients do. For them Bartenello is an opportunistic infection and can be very serious. Do you think that could be the case with Lyme patients and Bartenello? Seems plausable.
Bitten,
In regards to rashes. I have a couple of theories -- don't think either have been really tested. Either a person develops a rash because they are having a strong immune response to the borrelia or it is a different strain which causes the rash.
Hubby did not have a rash and so for the first couple of years we got lots of comments like -- you don't have Parkinsons so the tremors must be anxiety -- go see a psychiatrist.
Can you get together with a few colleagues and perhaps compile data??
in the computer age its not that hard OR time consuming- Your supposition is indeed intersting as are many others like : why do adolescents get hit harder than either young children or adults
What are the features that may suggest more aggressive treatment to avoid peristence is warranted ( some claim a correllation to HLA antigens, others state ethnicity, still others posit oddities like susceptibility to mouth sores (canker not herpetic)]
which are the truly successful protocols--pulse vs constant meds; which combos work best together and for whom
there are all sorts of things one can glean if you take the time to amass data sets and then assort accordingly
rather than guess Id like to see some progress on well, putting one's money where their mouth is, and start collecting data sets so we can USE them
I just feel that a wealth of info is already sitting in front of us ( not even hidden) and yet NO one is putting it together!!
SHARE (data), COMPARE ( data and theories) and ANALYZE ( results)then come to a conclusion -as I used to tell my lab students doing a group investigation task.
Yes, I have had the initial EM rashes (two of them) and then follow up rashes from time to time. I recently went off all antibiotics as there was a problem and I developed a couple of rashes. I have gotten used to them now. As far as my co-workers; they show me their initial rash because really they are scared. Then (not all of them) they take on a macho attitude after talking to some of the guys who will saw "awe, that could just be a ....... bite" wait and see if you develop symptoms. I've learned to just keep my mouth shut. We all work in wooded areas and I hear lots of comments about elbows and knees hurting and fatigue but, again, they know the dangers. They have seen others very sick. You can't make them do anything so research is out of the question although we have a good test group. I'm sure many are infected without symptoms or rashes. I work with biologists who test streams, arborists who do forest studies, engineers who work on dams and such. They pick ticks off their heads and other places. I used to pull ticks out of my hair frequently. I did not know about Lymes disease. I am not from an area where it is prevalent. I moved to one but it is still a "silent" thing and these guys have been going into the fields for years "and have never gotten Lymes" so they have no fear.
Dr. Burrascano claims he is doing this sort of research, to mine data. I am not know how this is progressing.
Here is the problem: Scientists- at least clinical ones- are not researching Lyme disease.
The physicians who treat Lyme patients are not scientists. They don't have the time or skill set to mine their own data.
Personally, I am trying to make a living. This blog has become a way of reaching out to others. It started for one reason, but has morphed into something else.
I have long thought that I have a mountain of data which could be mined.
Topics worth looking at:
1) Symptoms- which are most prevalent and which are most predictive.
2) Predictive use of abnormal physical exam findings.
3) Predictive value of a nonspecific lab markers: CRP, folic acid, B12, complement levels, CD57? and others.
4) Use of C6 peptide index- what range correlates with + WB
5) Vitamin D dysregulation as a disease marker
6)The use of blood wet mounts and or smears- how common is bacteremia- is a marker or causal factor?
7) There are numerous other things that could be looked at. I don't have a large enough pediatric population to find much of interest there.
I am hoping that the identification of the bacteria causing bacteremia may lead to a significant advance in our understanding of the illness. The work is getting done.
What I would need is: A scientists- or grad student with time on his hands- who could volunteer to mine my data. Better yet- if some one minded data from multiple physicians.
Every physician who treats Lyme tends to accumulate different data. Histories- exams- and lab data are all different.
First of, Merry Christmas!
Interesting observation. We have spoken with many Lyme patients in various LLMD offices over the years, and it does seem that women have a more prolonged illness. The woman definitely outnumber the men in LLMD offices. The men seem to have more severe Neuro-cognitive changes, perhaps due to delaying their diagnosis/treatment.
SeibertNeuroLyme, My daughter is also a "medical mystery" with a bit in common with your hubby. Have you tried a baclofen pump? It has helped my daughter a bit, the tremors are slightly improved and we also have a pain med in the pump which has been helpful.
I agree with all of you, a Lyme treatment center is long overdue. I had hoped that the Columbia Center would be a bit more inclusive...We need a center with multiple LLMDs, Lyme literate Neuro's, GI, Rheum., etc, Nutritionist, PT and other services... Hey, a girl can dream, right? :)
I am sure that you have data in your files that could be mined, dependent and independent variables established and high level statistical analysis performed to look at patterns, probabilities and many other things. I wish I had the time to do it. I've been convinced it is there if only organized and put into research form. I would think it would be a great dissertation subject. Most Ph.D. students are desperate for data but how to get the two together? I have long wondered why the scientists don't talk to the treating physicians. If you look at the criteria for the studies they are doing and the restraints on the people they want to recruit you wonder just how wide the gap is between the scientists and the treating physicians. It seems huge from what I have seen and why they do not utilize the existing data from treating physicians makes no sense at all. For my Ph.D. dissertation I went directly to the owner companies to study completed projects. I still believe many answers are in the charts of the treating physicians and, as said, with I had the time to organize the data and analyze it.
To: Lyme MD, re your December 25, 2008 9:38 AM posting (mining of your data by scientists).
I am an emeritus member of Sigma Xi who has been savoring every word you published in these blogs. I greatly admire your ethics, language, and way of thinking (and my kudos go as well to some of the bloggers, particularly dogdoc).
I volunteer to spend about 100 man-hours and check what can be done with your data.
As I see it, the fundamental scientific problem here is to define lyme/coinfection treatment “success” in a way that is measurable (quantifiable) and reliable and recognized as such! (A high CD57 would not make the grade, but might still be used in some cases.) I don’t know whether such a “success” parameter exists. Perhaps as a last resort we can measure ‘1,3…n years in remission’ where n is hopefully 10 years or higher. (If so, we must define what “remission” is in a quantifiable, reliable, widely acceptable way). Or, perhaps, 5 years with a permanently elevated CD57 level x% higher than baseline (at diagnosis)? Better ideas anyone?
If you think my volunteering might be of value, you may call me (reverse charges) at 949 369 8684 almost any time of the day (Calif. time).
Ben, Possibly a couple of us could work on this. I am local. I have a Ph.D. and am used to looking at variables and performing high level statistics. Maybe a couple of us could work together. I think we would find some interesting outcomes. We will see what LymeMD thinks. It is amazing to see who is looking at this blog. I don't think LymeMD knows how unique it is.
LymeMD I think items 1-6 would be attainable with the information that you have and you have enough of it for it to be statistically significant. That is key.
Thank you for the offers.
Let me get back to you when the time is a little better.
There some logistical issues.
Bitten: I am delighted that you know more stats than me. With your capabilties, I'll be happy to follow your lead, and to cooperate with you and anyone else that jumps on board.
If we have the opportunity to work together, in order not to clutter LymeMD's blogs with our future correspondence, I will reveal my direct email address to you and possibly to other collaborators if I am called at 949 369 8684.
By the way, I was bitten too, and became a moron, but recovered about 80% of my cognition after treatment per ILADS followed by an alternative type of treatment (the 18 months long ILADS treatment kept me in remission for only 6 months).
Dr. Burrascano has been asking lyme docs to join in his database project to do just the kind of data mining you suggest would be helpful.
So, maybe accept the offers in this thread to input the data from your files into the lyme database project, which will be relevant to a larger number of patients, being the data from more doctors than just one.
I do have a very strong statistics background using many variables, independent and dependent. I'm not in the medical field, I have a Ph.D. in Engineering. I would be very interested in hearing about your treatment. I did have a neuropsy evaluation which showed intellegence level still high but cognitive and memory borderline impared "not normally seen in the average population" I feel that I have a lot of it back but still have trouble. I don't know how much time I would have but I'd like to do it. I'm a patient there and I see how much information can be harvested. I don't even think LymeMD knows just how much data he has and how it can be used. I have designed many statistical models using "soft" data and have come up with reliable results. Look at Turn the Corner turnthecorner.org Dr. B is soliciting for treating physicians data to study. The answers are in the files of the physicians like LymeMD although I have not met another MD like him. Well, lets see what he says. I will see him soon and will bring it up. I see you are in California. I lived in S.F. for a while and love it. My cell is 301-525-3697
Yes, Dr. B is working through Turn the Corner Foundation and is asking for treating physicians data. He would be the one to think of this wouldn't he. Well, hopefully he will get some physicians to work with him.
re limie's suggestion to provide multiple MD's data to Burrascano:
It might help. But in my experience, when bad observations or interpretations are mixed-in with good ones, the result is often bad. I hope Burrascano will analyze data in at least in 2 ways: One, per individual MD, and then, per cautious pooling of all MDs' data.
Sight unseen, I'd trust LymeMD's data more than pooled MDs' data
Food for thought......
Women have a lessened immune response during pregnancy to prevent termination of the fetus. There is also an immune lull during estrous.
Does this play a role in the greater liklihood of prolonged illness ("chronicity") or frequency of treatment failure, when IDSA guidelines are implemented with female patients in treatment of tick-borne infections?
The IDSA recommended dose of Doxy is bacteriostatic, not bactericidal. If there is no decent fight being put forth by the immune system, how COULD it possibly prove effective in a female patient during estrous?
FWIW- I've had doctors erroneously make the assumption that I would be more likely to complain about minor issues because I am a woman.
Men are more likely to address pain more promptly & be taken more seriously by male physicians.
Women generally have a higher threshold for pain.
Men more often have women to "mother" them when they are big babies. Women are usually used to dealing with pain/illness on their own.
Few men will throw on a pot of chicken soup & get out the thermometer, tylenol, etc..., when their wife is too sick to take care of herself. She instead ends up becoming more ill, as she puts the needs of those around her first until she ends up at a doctor's office.
P L E A S E don't get me started!!! LOL
Sorry for the tangent. I seem to have gone a little off course. That's to be expected from a relapsing TBD patient, with laboratory positive Lyme, ehrlichiosis (anaplasmosis), Babesias duncani & microti, Mycoplasma pneumonia, positive & skewed EBV titers and "rare coccobaccili adherent to erythrocytes".
May God bless the physicians who "dare to care". Please don't give up & don't let IDSA get you down. Their day is coming soon and your efforts to help your patients will be recognized. I can feel it.
Continue to seek out knowledge & form your own opinions based on what you find.
Remember..."first do no harm" and think of the psychological damage that is done by denying the legitimacy of illness of a suffering patient.
Follow up with those women you think were easily cured. They may not be admitting psychological issues or may be blaming them on severe "PMS", general "bitchiness" or aging.
I'm sure that the doctor who authors the site www.thehumansideoflyme.net could offer explanation as to how the level of psychiatric illness of a female patient could more easily be overlooked or dismissed by a male physician.
It also takes a lot for a woman who's adept at the application of make-up to actually "look" sick.
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