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Old 05-01-2013, 10:36 AM
 
Location: NJ/SC
4,286 posts, read 13,402,156 times
Reputation: 2593

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May is Lyme Disease Awareness Month.

I'm 7 yrs with Lyme and co-infections and on my 6th treatment, there is no cure. It's a chronic, for life disease that most people don't know about or understand. Please if nothing else, use tick repellent and learn to remove a tick properly even if you don't believe in Lyme (I forgive u). LymeDisease.org - central voice for Lyme disease and all tick-borne disease issues is a great source for this info. and explains more about the disease. If you have a wild variety of ailments going on including; extreme fatigue, headaches, limb numbness/pain but dr's can't figure it out but are all too happy to write you a rx for the symptoms without trying to really figure it out, then consider Lyme. I'm not saying you have it, just saying not to discount it. I had it for 3 yrs before I figured it out and it did a lot of damage that cannot be reversed. I wasn't hiking, gardening or anything outdoorsy....all you have to do is walk across the grass and a tick can latch on or your pet can bring one in.

Last edited by Global Friend; 05-05-2013 at 11:19 AM..
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Old 05-01-2013, 05:00 PM
 
Location: Windham County, VT
10,628 posts, read 4,951,024 times
Reputation: 20847
My beloved aunt has Lyme.
She lives in No. Calf. & is an outdoorsy person in rural area-
I'm *not* saying that in a blame-y way at all, I mean that she loves the outdoors & nature, which makes it all the more agonizing for her to have to struggle with fear about going out, esp. since she detests the required toxic chemicals one's supposed to apply. She's read of using lime & clove oils instead, as topical application to exposed skin, hope that works for her. I'm agoraphobic & live in New England, hardly a safe place from Lyme, but I rarely go out, and even less often to rural areas-I worry about ticks, but I also worry about 30,000 other things even more acutely.

Feel bad for my aunt's situation, though I can't pretend to understand Lyme beyond the surface information.
At first, over a decade ago, she thought she had MS, and now she wishes she'd known it was Lyme sooner, so it would've gotten caught earlier & may have been easier to treat effectively.
Now she has to use a rife machine (way beyond my ability to comprehend) & takes all manner of extracts (she's a homeopath), as antibiotics (which she has tried off & on, year after year) have caused side effects too serious to ignore.

So, OP, you have my sympathy as well-for what you continue to go through
& for how marginalized it can make you feel
bc. the general public doesn't seem to realize the chronic nature of it (when it hasn't been caught/identified correctly early on & successfully eradicated from the body).
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Old 05-02-2013, 08:39 AM
 
Location: NJ/SC
4,286 posts, read 13,402,156 times
Reputation: 2593
Thank you so much. Tried to give you reps but I must have already recently for something else. I hope your aunt can find remission one day and have an enjoyable life again.
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Old 05-02-2013, 09:08 AM
 
Location: Bucks, UK
523 posts, read 3,415,944 times
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chronic lyme disease is one of those conditions that creates a lot of controversy among the medical profession (and public) - as things stand, most doctors would probably not believe in its existence, and those that do are a fairly tightly knit group who seem to charge rather high fees...something about this doesnt smell quite right.

i have no doubt that people who think they have (or who have been "diagnosed" with) chronic lyme have very real and problematic symptoms, but i cant help wondering whether there is some other underlying cause for their symptoms that has yet to be identified, but which is convenient to label as being due to lyme (or fibromylagia or chronic fatigue syndrome, for that matter). either that (or possibly in addition) lyme is the trigger for psychological issues. the other possibility is that initial infection triggers an immune response that persists (and causes symptoms) long after the acute infection has been treated and cleared.

i wouldnt be at all surprised if science comes up with a better elucidated and more credible explanation for the symptoms suffered by these unfortunate people in years to come - sadly we are not there yet, making treatment (without knowing the underlying cause) nigh impossible.
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Old 05-02-2013, 09:38 AM
 
Location: Windham County, VT
10,628 posts, read 4,951,024 times
Reputation: 20847
Quote:
Originally Posted by Rapture View Post
Thank you so much. Tried to give you reps but I must have already recently for something else. I hope your aunt can find remission one day and have an enjoyable life again.
Thanks
I hope that for my aunt, too, though both she & I are skeptical about it, as it's been over a decade that she's been so ill from it.
Here's an article she sent me (written by someone else) about the risks of doing some gardening
when one already has Lyme & is afraid (quite reasonably) about being re-infected, bitten by yet another tick
(as my dear aunt recently found a couple more ticks on her arm after going outside, amplifying her difficulties).
I feel for her predicament (having to fear one's environment, yet not wanting to hide indoors):
Garden of Evil? | LifeLoveLyme
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Old 05-02-2013, 05:00 PM
 
Location: NJ/SC
4,286 posts, read 13,402,156 times
Reputation: 2593
Quote:
Originally Posted by kronenborg View Post
chronic lyme disease is one of those conditions that creates a lot of controversy among the medical profession (and public) - as things stand, most doctors would probably not believe in its existence, and those that do are a fairly tightly knit group who seem to charge rather high fees...something about this doesnt smell quite right.

i have no doubt that people who think they have (or who have been "diagnosed" with) chronic lyme have very real and problematic symptoms, but i cant help wondering whether there is some other underlying cause for their symptoms that has yet to be identified, but which is convenient to label as being due to lyme (or fibromylagia or chronic fatigue syndrome, for that matter). either that (or possibly in addition) lyme is the trigger for psychological issues. the other possibility is that initial infection triggers an immune response that persists (and causes symptoms) long after the acute infection has been treated and cleared.

i wouldnt be at all surprised if science comes up with a better elucidated and more credible explanation for the symptoms suffered by these unfortunate people in years to come - sadly we are not there yet, making treatment (without knowing the underlying cause) nigh impossible.
Sorry but no, this is incorrect. Wish I could take the time and explain it in my detail if you were interested in reading. After 7 yrs of actually living with it, I've learned a lot. There is a documentary, "Under Our Skin" that goes in some detail about the controversy and I think it now can be seen on youtube. I bought the video a couple yrs ago. There are politics involved, CDC, greed and some other things. Dr's believe in it, it's just that most don't want to treat it because it's difficult to treat and they don't want to take the time to educate themselves. Considering this and the public with opinions like yours are around and no commercials/PSA's etc...like with other diseases only makes it harder for those of us suffering with it. I had 3 businesses, volunteered and went out and did things at least 5 nights a week with no reason to stop until I got bit and couldn't get a dr to deal with it because of where I live. I finially figured it out and started treatment by a dr that cares and knows what he's doing. Problem is the damage was done, I just have to now hope for remission. I get regular bloodwork and always comes back positive and I have symptoms that back up all of it. I worked my whole life and had a good life that had no reason to give up so none of what you says makes sense, sorry. It's just people are misinformed and uneducated on the subject. Please use tick repellent so that doesn't happen to you.

Last edited by Global Friend; 05-03-2013 at 11:09 AM..
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Old 05-03-2013, 01:31 AM
 
Location: Bucks, UK
523 posts, read 3,415,944 times
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no need to apologise - im not incorrect or misinformed.

and by the way, you are doing nothing to help your cause with posts like that - the blanket position of "You are wrong, I am right", gets nobody anywhere...even my 5 year old daughter knows this. if you want to debate or discuss a specific issue, then do so, otherwise dont expect intelligent discourse.

you refer to "opinions like mine" - my opinion happens to be that there are a significant number of people out there, some of whom are being labelled as "chronic lyme" some of whom are being labelled as "chronic fatigue" and others as "fibromyalgia" - who have a collection of symptoms which may, in fact, be due to another, as yet, undiagnosed condition, or in fact due to an autoimmune response triggered by the original (but now long passed) infection - this is postulation on my behalf, not established fact, but if medicine actually gets to the bottom of whats really going on, it might offer some relief from people like yourself who have suffered so much, for so long.

rather that, than line the pockets of doctors who claim to know how to treat a medical condition which isnt even accepted by the majority of the establishment, and for which there is little decent quality evidence to support, while conveniently making those same doctors very wealthy.

we do agree on something, though - it is best to avoid exposure to ticks as much as possible, wear repellant and appropriate clothing, and do regular whole body checks for ticks if you have been in an area of risk - lyme disease is most definitely a real entity in the acute form (i have had it too), and it can cause some long term health complications
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Old 05-03-2013, 05:21 PM
 
Location: Raleigh
8,047 posts, read 5,903,506 times
Reputation: 9785
Quote:
Originally Posted by cloven View Post
My beloved aunt has Lyme. She lives in No. Calf. & is an outdoorsy person in rural area<>At first, over a decade ago, she thought she had MS, and now she wishes she'd known it was Lyme sooner, so it would've gotten caught earlier & may have been easier to treat effectively.
Now she has to use a rife machine (way beyond my ability to comprehend)<>
So I thought 'rife machine' rang a bell, and wiki has this article:
Royal Rife - Wikipedia, the free encyclopedia
So who told her she "has to use" it?
You may want to do some more research on this illegal, deadly device for her. Or not. You decide.
Crashj "there's a lot of majik in medicine these days" Johnson
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Old 05-03-2013, 06:29 PM
 
Location: Mostly in my head
19,828 posts, read 56,060,783 times
Reputation: 19025
When 2 posters start squabbling, the thread ceases to be of use to anyone. The prior posters are coming at this from different perspectives. Enough.
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Old 05-05-2013, 08:52 AM
 
Location: Bucks, UK
523 posts, read 3,415,944 times
Reputation: 1128
Moderator cut: Off topic

Let's keep the thread on topic or it could be closed

Last edited by Willsson; 05-05-2013 at 10:03 AM.. Reason: Off topic
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