Topic: Amazing how many people on other sites have lyme sx and don't know it?
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I've been lurking on medhelp.org and a few other sites trying to spread the word about lyme.
I spent a lot of time looking for answers on medhelp when I felt terrible and was not yet dx'd with lyme. I'm trying to "pay it forward" to other people suffering.
I've spent most of my time on the neurology board and anxiety boards. It is crazy how many people there are describing lyme / bart / babs symptoms.
Not everyone, mind you, but the majority are. I feel so bad for them. I'm doing my best to spread the word. I hope they listen!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
It's a total crime how this is all kept so quiet. When my wife asked my LLMD why this is so misdiagnosed/swept under the rug, his immediate reply was the government created it. He didn't state Plum Island or any other testing facility, but it would not surprise me. Until recently, I had the utmost belief in the government and medical system but this disease has made me very synical.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
I just realized something the closest land mass in CT to plum island is Lyme , Ct
has anyone else realized this?
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Wow, what a thought. I live 11 miles from Hamilton MT which is where Willie Borderfor (sp) discovered the spirrochete causing lyme. In the book Cure Unknown, she says Willie was making the most virulent strains of Bb by feeding the brains of dead mice to the baby mice.
I sometimes wonder, how did the wood tick get infected with Bb, bartonella etc here in Montana where these diseases never existed before? Is it unreasonable to wonder if some mad scientist from the lab just let some of these pathogens out?
Now the lab is a level four which means it has the most deadly pathogens known to mankind stored in it. When they were still in the planning stages there was some protest. I felt the lab chose this site because the town is himmed in by mountains on both sides with only one road running through it. If something happened we could all be quaranteened as blocking this road would stop all traffic.
By the way, what was the topic? Oh yeah, that no one knows about it and they are misdiagnosed? Makes no sense to me at all.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I've noted that symptoms of Fibromyalgia and Chronic Fatigue Syndrome are similar in many ways to Lyme disease. But then, with all the naschty manifestations of Lyme - 'the great imitator', I guess it's not rocket science that it loops in with lots of 'mystery' ailments.
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-------------------- "Yes, I'll have a Cosmopolitan... but please, hold the Lyme." Posts: 17 | From Maryland | Registered: Jun 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I have posted on a few fibro boards. I read these people's posts and it's like I could have written it. Symptoms that have NOTHING to do with Fibro...I try to educate them.
Most of the responses I got were warm but many of them said "Oh i was tested for Lyme and it was negative." And so then I tried to explain the testing issues.
I plan on doing many things to get the word out once I start feeling better, I've got way too much going on right now (sick, school, work, kids). But one day...
posted
Paul - it really upset me to read about Plum Island as well and when I first told my wife, she thought I was crazy. She also thought I was crazy that I needed to find a doctor to treat me that was not an ID doctor. I hope this isn't true but whether it is true or not, this is a major issue that needs to be addressed. I can only imagine how much more widespread this will be as the disease spreads more amongst ticks. I think I read they lay/hatch 3,000 eggs and the nymphs are as small as the period at the end of this sentence.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Not everyone who has Lyme symptoms actually has Lyme. Some of the symptoms are common among a number of illnesses. It's just really hard to sort it out since the tests are not accurate.
The Plum Island link has been discussed here. The book Lab 257 by Michael Carroll is very good. There are alot of links to biowarfare & Lyme if you search the internet. There's alot of info here if you do a search, too.
Now, people are considering XMRV as a potential cause of our illness. It's really hard to weed it out to find out the exact cause of the illness many of us suffer.
Some people think that Lyme is the root of everything but I don't think that is the case. It could be a number of things - some of which probably aren't even recognized yet.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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bcb, articles like this show how thoroughly the American doctors have been indoctrinated with the belief that after they have given their patients 28 days of meds, they can't possibly have lyme disease anymore.
So, lyme is thrown out as a possible cause of symptoms, and the patients are left to wander about looking for someone who can figure out what is wrong with them. They need to somehow run into that tiny 2.1% of physicians that believe lyme can be chronic and will treat them for this condition.
That's why you see what you are seeing on the anxiety and neuro boards. Thank the IDSA and their continuing education program regarding lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
That is the MD who stated to my wife and I "I know Lyme and your daughter doesn't have Lyme Disease".
He should be sanctioned. He thinks his patients are cured when in effect they move on to the Lyme Literate Medical Doctors he is trying to isolate.
Its the money.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
bcb - I was just thinking the same thing...I was on the Digestive Healing GAPS diet site and have read numerous posts of people who have RA or JRA or fibromyalgia...and I am pretty sure they have lyme!
The first post I read was a woman who said she had severe fatigue and migraines. I explained it could be lyme and then she said it had started 4-5 years ago with a high fever and then bells palsy and extreme fatigue for months...and she never felt the same after that. Hmmmm...I wonder what that could be? Well, she was open to the lyme thing and even mentioned that a chiro friend had recently done muscle testing on her and told her that she had lyme. She is looking into it now and even asked for more info. So I felt good helping one person, but there are so many more on that site. I feel like they will think I'm crazy if that's all I post about. But I can see it a mile away. It's everywhere. So sad.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I came to the Lyme forums from an online IC support group where it always struck me that so many of us with IC also had fibro and a whole host of other inflammatory diseases. I would love to find a short (1/2 page or less) explanation of symptoms and a convincing write-up on testing problems that I could share with people. I revisit that forum from time to time putting the Lyme idea out there, but many people have been tested and figure a negative result is the end of the issue. It's very difficult to convince them otherwise. Not that I think everyone with IC or fibro has Lyme, but I would like to get the word out that the tests are not difinitive despite what their trusted doctor has told them.
I was tested in 2005 via Elisa by a rheumatologist who told me I definitely did not have Lyme. I was unaware that the tests were not reliable, and took his word for it. It took four more years of misery and declining health before I finally got retested with a WB and was found positive for Lyme and after further tests, with babesia and bartonella, too. Mistake I'd like to help others avoid.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I tried discussing Lyme Disease on a number of forums. It was not well received.
The complexity of Lyme Disease combined with the complexity of these other conditions, makes people not want to invest effort in considering other possibilities, since they're so wrapped up in the diagnosis their doctor gave them.
It takes a lot of time to get up to speed on Lyme Disease. The doubts, fears, and faith patients have in their physicians are all challenged. Unless the patients is spiraling down and headed toward death, few are willing to consider that their doctor's diagnosis may be incorrect.
-------------------- 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.
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I'm amazed too..... So many illnesses seem so obviously to be Lyme, but the denial in the medical community is beyond believe. There are Pink Elephants everyone and NO One will talk about them. It's crazy!
Thank God we have this site to share thoughts. It has been a tremendous comfort to me. After Under Our Skin came out, I decided to become more vocal to get the truth of this thing out to help people. I sometimes feel like an alien in my community. Very few "get it". They must think I am a weird hypochondriac. Plus, I am getting tired of talking endlessly, and so much of what is said falls on deaf ears. In our family too!! It's mystifying.
Started reading Lab 257, in small doses. I totally think this thing was created and released (perhaps accidently, but who knows....)
Paul -- nice to see your positive outlook. I'm in the dredges right now. But glad to see you are "up". It is a lift to share in your good state. Keep going! God bless.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I feel the same way about mentioning Lyme on other boards. People don't want to think that the CDC is lying to us.
The illness that really seems like it was created in a lab and released is Morgellon's. But maybe nature is just doing weird things because it is so out of balance.
I do find it odd that Lyme is growing by leaps and bounds and governments all over the world don't want to acknowledge how serious it is.
But AIDS started out in the same boat, and now, I think, is accepted and treated properly. Hopefully Lyme Disease will follow suit.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
Before my diagnosis, I was told at Mayo Jax, I have "post viral syndrome" They said they see a lot of cases just like mine...People from all over come to these "top respecting teaching" hospitals to be given a diagnosis of post viral syndome. I bet it is all Lyme disease!
I knew there was no way by body would do this to itself...something was causing my body to freak out...Borrelia burgdorferi!
Posts: 747 | From Utah | Registered: Apr 2010
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