So it says 16k. Quite a tiny amount frankly . For one of the most popular resources lyme wise it is really tiny number . I tried to find other boards for lyme but all of them are a lot less active. -This is most popular and most active one by far.
Overall it kinda means there are not that many people with lyme.
Posted by sutherngrl (Member # 16270) on :
It might just mean there are not that many that know that what they have is Lyme.
Posted by Abxnomore (Member # 18936) on :
"Overall it kinda means there are not that many people with lyme."
No, overall it unfortunately means many have not found us and many are misdiagnosed or have been under treated and have no idea what is wrong with them.
Not all sick people turn to the internet. Many believe what their doctors tell them and lots of people, believe it or not, still don't have internet access.
Posted by seekhelp (Member # 15067) on :
I agree SG. To stay here and arrive here, you really have to go against the odds, against all normal doc's advice, etc. It's kind of an evil cult to outsiders to be honest. Only when you've hit total desperation, tried it all, and haven't made improvement do you come here and start believing maybe it's a possibility? If you have a bullseye rash, it's a whole different story.
How many here really do/did though? Posted by coltman (Member # 21272) on :
Regardless it is still a tiny amount .it actually does make sense -based on list of LLMD I received for several neighboring state it looks like average amount of LLMDs pers state is about 5.- Given that some states have very few LLMDs (my list are for Northeast and its more than 5 for those)
Very rough estimate is there is 250 LLMDs in US total.Lets say amount of people who registered on those boards and have lyme is about 1/3 of those who has it (and knows about it ) .48k- lets round to 50k . That means around 1000 patients per LLMD- seems about right to keep them busy full time (even a bit overboard -suggesting there are less people with lyme than I estimated)
So all in all a best guesstimate is that there is only 50k people in US who have lyme (and know about it). Frankly that is minuscule amount -it is double the CDC numbers (27k in 2007) but still I would say very low
Posted by Ocean (Member # 3496) on :
I know at least 3 others with Lyme who are not lyme.net memebers. Same with a lot of diseases. When I was dx with CFS, I never visited a CFS forum, though it was the late 90's before there were many active forums.
I bet a lot of people lurk here and many never post.
Posted by Abxnomore (Member # 18936) on :
Many do lurk here and never post. I know that for a fact.
And you still can't disregard all those who are misdiagnosed with MS, ALS, CFS, FMS and the list goes on.
The ones who are here are the lucky ones, believe it or not.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Abxnomore: Many do lurk here and never post. I know that for a fact.
And you still can't disregard all those who are misdiagnosed with MS, ALS, CFS, FMS and the list goes on.
The ones who are here are the lucky ones, believe it or not.
Very true.
Posted by sutherngrl (Member # 16270) on :
I like the way Seek said it!
If you arrive here its kind of like the end of the road. Out of desperation you find your way here.
And its true that many ppl do just accept whatever their regular mainstream doctors say. Not just many, probably most. My own mother is this way. And she doesn't use a computer.
Posted by abigail (Member # 14936) on :
I worked at a rheumatologist's office. I typed on people diagnosed with fibromyalgia all day long. I even caught one patient in the elevator crying, and I had to tell her about the Lyme coverup. There were a lot of patients, and their symptoms were a whole lot of pain, headaches, fatigue. My doc just diagnosed them with fibromyaliga/chronic pain disorder. He told them they were just feeling pain that wasn't really there. I'd give a million dollars to see one of them punch him in the mouth and say "that pain is not real."
Posted by AnnaL (Member # 18464) on :
Some of the activists and support group organizers in my city aren't on Lymenet. Not because they don't have Lyme, but because they often have other things to do than use message boards.
Not a slam to anyone on the board--I'm here every day--but when you figure in work, spouse, kids, pets, life, etc., there are a lot of people who might not want to spend time online. For example, my husband (a software engineer with Lyme, who works for one of the biggest internet companies) does't spend a lot of time online at home.
Of course, if you disconnect me from the internet, my brain melts.
Posted by seekhelp (Member # 15067) on :
I'm here for one reason. To try to help myself get out of this terrible situation I'm in. I've had days where I can hardly see straight and still prayed some tidbit of info would pop up that could make me more functional.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by AnnaL: Of course, if you disconnect me from the internet, my brain melts.
Gee, the same thing happens to me! Very curious! Posted by gwb (Member # 7273) on :
quote:Originally posted by seekhelp: I'm here for one reason. To try to help myself get out of this terrible situation I'm in. I've had days where I can hardly see straight and still prayed some tidbit of info would pop up that could make me more functional.
Took the words right out of my mouth.
Posted by springshowers (Member # 19863) on :
This might be he reason too. For me I did not even know there were support forums and i found them only one year ago and was diagnosed 5 years ago and sick for 10 years with what they said was FMS and CFS and still did not know of boards?
WHY? I do not know? I was online and very computer savey and my whole business I had prior to losing it revolved around the internet.
How could I not have known? I have no idea? I signed up for newsletters and read articles and such. But.. It took all that time to even know about the support forums for Lyme and for any other illnesses.
I look back and can not see how that happened but.. well it did.
I bet there are many that just do not know about them. Honest. This disease can be very isolating too and how would you find out? You have to do a lot of internet searching or someone has to tell you or something..
I feel a bit silly admitting that but I felt that it has to be part of it.
Posted by abigail (Member # 14936) on :
I think the negative Lyme test slows us all way down. Someone at The Roadback Foundation for people with rheumatoid arthritis told me the Lyme tests were no good. Without that person, who knows where I would be right now.
Posted by Robin123 (Member # 9197) on :
I think:
You have to find out Lyme exists. You have to find out you might have Lyme instead of all those other symptoms and names for them and you.
You have to be willing to question doctors who tell you otherwise.
You have to have a computer or be willing to use one and have the time to do so. You have to find out Lymenet exists.
There are a lot of hurdles to getting here.
Re the 50K number you're suggesting of people who know they have Lyme and and see LLMDs, there are a lot of people who know they have Lyme who cannot travel out of state to get to an LLMD doctor.
There are a lot of sick people who cannot afford to see a doctor. There are alot of people who are not seeing LLMDs who are self-treating, with herbs, etc.
Re patient number for an LLMD - many LLMDs have more than 1000 patients - up to 1800, I've heard for one. Not sure of numbers for other busy doctors.
And numbers of people with all the other diagnosed conditions that might be Lyme? In the millions.
Posted by JamesNYC (Member # 15793) on :
Coltman,
That is some conclusion to jump to. You look at the world from a very narrow IT-guy perspective. Most people DO NOT join forums like this nor do they participate in flash discussions, regardless of the topic.
The amount of people on this site has no correlation to the how many people have lyme. It's ridiculous to draw that conclusion.
I know 4 people who have lyme and don't come here even though I try to get them too. They don't like this kind of interaction. They're not computer comfortable.
Your attempt to guess-timate makes even less sense. Most people who are DIAGNOSED with lyme are NOT treated by LLMDs. Most people with lyme probably don't know they have it.
LLMDs only get the patients who, for whatever reason, need to go beyond their PCPs because they believe they have lyme and it persists.
For every person that goes to a LLMD there are probably dozens who were treated by other Drs and now believe they have whatever the IDSA says they have (as long as it isn't lyme) CFS, MS, FM, RA, etc.
But why does it matter? Do YOU have lyme? Then if no one else has it so what? You do.
Posted by bettyg (Member # 6147) on :
so what is the reason you posted this? it belongs in SUPPORT ...
Posted by WildCondor (Member # 434) on :
yeah Betty is right, it belongs in support . Imagine if all the FMS and CFIDS patient learned what the cause of their symptom was....they'd crash the server logging in...lol who knows why.
Posted by LisaS (Member # 10581) on :
Did you start this just to get a rise out of everyone? Thanks for raising all of our low blood pressures today=)
Posted by wtl (Member # 19883) on :
quote:Originally posted by coltman: Very rough estimate is there is 250 LLMDs in US total.Lets say amount of people who registered on those boards and have lyme is about 1/3 of those who has it (and knows about it ) .48k- lets round to 50k . That means around 1000 patients per LLMD- seems about right to keep them busy full time (even a bit overboard -suggesting there are less people with lyme than I estimated)
Just a quick math correction - according to your numbers, it would mean about 200 patients per llmd, not 1000 (50k divides by 250).
Posted by coltman (Member # 21272) on :
quote:Originally posted by wtl:
Just a quick math correction - according to your numbers, it would mean about 200 patients per llmd, not 1000 (50k divides by 250).
Thanks for correction. My brain is totally shot , lol ,I used to be able to perform trivial arithmetics - seem not anymore!
Anyways 200 per LLMD seems believable number to me as well . Since once patient can have multiple visits per year and not all docs see exclusively lyme patients . Also not all of them work full time (seeing patients thats it).
Anyways all in all I do think there are not that many people with lyme, especially if they confirm XMRV as pathogen and causative agent of CFS.
Does it matter? -not too much . Started thread because I felt like throwing some speculation out there You know like one of those - " how many gas stations there is in NYC ? " questions they sometimes ask you on interviews
Posted by WildCondor (Member # 434) on :
Most of the good LLMD's have over 5,000+ patients
Posted by Tincup (Member # 5829) on :
"Anyways all in all I do think there are not that many people with lyme, especially if they confirm XMRV as pathogen and causative agent of CFS. "
That is so much bologna!
Of the group of the very sickest patients tested in that ONE study...
Repeat... ONE study...
Only 67 percent were positive for the virus.
Why do the others have CFS then?
And... how many of that group were tested for Lyme and were positive?
None.
And none were negative either.
Saying that virus is the cause of CFS is like saying 71 percent of those in the group had brown eyes... so it is the brown eyes that causes the CFS.
If you tested that same group for Epstein Barr and only 6 percent tested positve, it would then, by your way of thinking...
Be safe to assume Epstein Barr is not the cause of CFS.
Or is it possible?
Your calculations remind me of the cutting board/toilet seat study.
In 100 households, researchers tested the toilet seat and the cutting board from the kitchen for bacteria levels.
In all cases, the cutting boards had more germs.
Conclusion....
People should cut up their veggies on their toilet seats.
Posted by Tincup (Member # 5829) on :
Colt said...
"So all in all a best guesstimate is that there is only 50k people in US who have lyme (and know about it). Frankly that is minuscule amount -it is double the CDC numbers (27k in 2007) but still I would say very low."
Not sure where you got your numbers.. but ...
The CDC's estimate of those who contracted Lyme just since reporting began...
3.3 MILLION in the USA alone.
BTW- Did you count those who don't have computers?
And the children who are at the most risk?
And those who have died?
Or the mom's with families where all are infected and only one person posts?
Or the numbers from the LymeNet boards prior to this one?
If memory serves me.. there were 3 previous LymeNet boards.
The others wore out from so much use.
Posted by sometimesdilly (Member # 9982) on :
tin- wow!
i didn't know about that study! Thanks for posting the results.
I'll git going on moving some sound into the bathroom cause i need rhythm when i chop veggies, and i can hang my knives up on the towel rack.. ..
Are there any suggestions in the study about where i should clean the knives afterwards? Do I wash them in the toilet or haul them back out to the germy kitchen?
the choppin' pickle
[ 10-17-2009, 11:22 AM: Message edited by: sometimesdilly ]
Posted by Tincup (Member # 5829) on :
"Are there any suggestions in the study about where i should clean the knives afterwards? Do I wash them in the toilet or haul them back out to the germy kitchen? "
Goofy girl!
But that is the point.
It's all in the way the data is used... and IDSA has a way to squirrel around with it to our detriment.
BTW- If you decide to wash the knives in the toilet... please remind me of that when I come to visit.
T'ain't bad nuff that you will have a cow in the guest room to milk for fresh ice cream when I want it... and cabana boys at my disposal...
But now I have to watch where I sit myself down to do my business!
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