Lyme Disease - Do You Have IT too?

[Dragonfly]

I know there are lots of people who read this forum, and I'm guessing that some of you have Lyme Disease, as I do. I contracted it 8 years ago, but thanks to the tell-tale bull's eye rash, I was diagnosed fairly early. Some aren't as lucky as I was, and as a result, don't know they have Lyme for months or even years. Many of these people are misdiagnosed with MS, Parkinson's, Chronic Fatigue Syndrome, and many other debilitating conditions.

Since getting Lyme Disease, I've sporadically experienced some chronic symptoms in spite of going on antibiotics for 30 days when first diagnosed. Just a few days ago, I experienced what was probably yet another "Lyme meltdown". These meltdowns occur about every 6 to 8 weeks, and usually just require a day of total rest. I'm interested in hearing from fellow Pinelands residents or visitors who have similar symptoms.

Today, I spent several hours researching Chronic Lyme Disease. It seems that a 30-day treatment of oral antibiotics (what I received) is not enough to wipe it out, and recurrence is not unusual. I also read that many doctors will not prescribe what is "really" needed, because insurance companies won't cover it. But it goes deeper:

I also learned about "Plum Island". Has anyone done any research on this place? Does "Operation Paperclip" sound familiar? If you Google "plum island lyme disease", you will open a Pandora's Box on this topic, including 2 books written about this place off the northeast tip of Long Island. And, it's just 6 miles south of the coast of CT. Urban Legend or Fact - I don't know!!

Maybe I'm slightly off-topic by posting this, but there are so many cases of Lyme Disease in the Pine Barrens that I'm hoping to connect with others who have this crazy disease and maybe get some answers!

By the way, I got bitten in my back yard...not walking deep in the Pines. I live on the edge of the Pine Barrens in a residential development. No, I haven't stopped hiking; I just take more precautions. And yes, I fear chiggers more than I do ticks!!!

 

[woodjin]

Sorry about your chronic Lyme's. Ed, who occasionally posts, has it and has had chronic symptoms. Maybe he will chime in. I know he suffered quite a bit as a result of contracting the disease.

Jeff

 

[Sue Gremlin]

I have been to Plum Island, it houses the National Animal Disease Research Center. Not sure what it has to do with Lyme disease though. They mostly study diseases that are a threat to our national agriculture, most diseases there are not found in the US. The bulk of their work is with Foot and Mouth Disease.

Cathy, you really need to see an infectious disease specialist and get the proper treatment. You still may have circulating bacteria and that is something you don't want. Lyme disease is not something you have to live with, it's curable. If you have lingering symptoms, that's one thing, (that happens in chronic unresolved cases), but if you have the active disease, you really need to fix that.

 

[Sue Gremlin]

I just Googled. The implication is that Lyme Disease originates from the NADC on Plum Island?
Just so you know, Plum Island is no secret. I guess it's human nature to be curious about things they don't have access to, but you can call them and ask them anything you want, and I think you can go there if you really want to. The families of the employees are invited there for events, it's not totally restricted to employees. The labs, however, are very restricted, and understandably so! I had some work to do with some of the research animals (pigs) and had to go through the whole isolation routine. It was not a simple process, they make you get totally naked, walk through areas, and shower, including dunking your glasses in solution. I had to remove my contact lenses and they make you scrub out your ears and nose. The people who work there are the cleanest people in the universe! And they apparently are used to seeing each other naked.
In any case, Lyme Disease does not originate from Plum Island. They are there to develop defenses against threats to agricultural animals.

Incidentally, it's a fantastic island, full of decaying military ruins and completely wild coastline, complete with seals. It's one of the more beautiful places I've been. My dream job would be there, and one day that may happen. Seriously, you get to take a boat to work every day! How cool would that be?

 

[Sue Gremlin]

Here's some information. The more you read, the more you realize that it's no secret, and there's no mystery, just strict biosecurity.
http://www.ars.usda.gov/main/site_main.htm?modecode=19400000

 

[Ben Ruset]

I was nervous that I had lymes, so I was tested... came back negative. I have a lot of the symptoms of it, though -- mostly achey muscles and a generally tired feeling all the time. I think I may have fibro, which really sucks.

Still, as my friend Strom would say, "press on!"

 

[piker56]

Dragonfly,
I contracted Lymes in 1990. The diagnosis was made difficult in that I did not get the "bulls eye rash". Once diagnosed (by blood test), my doctor treated it very aggressively. I'd need to look at my records, but I was on a fairly high dose of antibiotics for at least 4 months (July through October). If you have any doubts about the treatment you are receiving, please get another opinion. As Sue said, you don't need to live with it if properly treated. I have had no symptoms since 1990. Best of luck.
Greg

 

[46er]

Here is a link the Lyme Disease Association, located in Jackson NJ, lots of good information with a link for doctor referrals and current studies.

http://www.lymediseaseassociation.org/AboutUs.html

 

[Sue Gremlin]

Ben, there are so many other tick-borne diseases other than Lyme disease. Were you tested for any others?

 

[Dragonfly]

Thanks for all the info, Sue. I figured the Plum Island story had two sides, and it was reassuring to hear you tell the other side! I'd still like to read the book, LAB 257, about the facility. From reading reviews, it's also rumored to be the source of the West Nile outbreak. It sure does sound like a beautiful place, though!

You and Greg are right - I should go to a specialist; my doctor blows it off, as if he doesn't want to get involved with the paperwork. I only get meltdowns occasionally, usually when I'm physically stressed or run down. This time it was - I think - the smoke coming up the South Jersey coast from the fire in VA. I was in AC Saturday, and a brown haze covered the island. It irritated my lungs, and I had my meltdown that night.

Ben, I think you should also get another opinion - from all my reading, I did learn that often tests come back with false negatives. As a result, symptoms are often misdiagnosed. Fibromyalgia and Lyme are often confused: http://www.canlyme.com/fibro.html. I'll let you know if I find a Lyme-literate doctor around the Pines!

 

[Ben Ruset]

Ben, there are so many other tick-borne diseases other than Lyme disease. Were you tested for any others?

No. I was getting bloodwork done anyway and said "hey while you're there, check for lymes."

The only reason why I would think it's fibro is that I have the trigger points. It makes hikes/etc. very tough.

 

[MarkBNJ]

I just had blood drawn last week before my sailing trip due to symptoms similar to what Ben is describing. I had quite a few tiny ticks on my trip to Union Clay a month ago... so better safe than sorry. Haven't heard back yet, though.

 

[bobpbx]

Still, as my friend Strom would say, "press on!"

Yeah, good one Ben. I remember 'ol Strom. I wonder what happened to him.

I think I was probably the guniea pig for Lymes in NJ. I had a weird series of sore throat infections and upset stomach in 1987-1988. I then had a severe bout of depression that lasted 9 months. I dismissed it, but in retrospect I had a tick bite with a red rash around it that just would not go away for a couple months. I really think it may have been Lymes, but I had the Western Blot test 5 years later and it was negative. Maybe my system beat it.

 

[Sue Gremlin]

Here's a pretty informative pamphlet about tick-borne diseases in NJ. Like I've said ad nauseum, there is more than just Lyme disease out there, so when you go to the doctor with suspecions of tick-borne illness, the diagnostics should not be limited to Lyme disease. Not all physicians are up on things, and ultimately our health is our responsibility.
http://www.shore.co.monmouth.nj.us/06270_mcmec/tickborn.pdf

With global climate changes, changes in the distribution of these ticks and the diseases they carry are also changing.

 

[Sue Gremlin]

And I am probably repeating myself, but my boss had both Lyme disease and ehrlichiosis in the same summer last year. It's possible for anyone at any time to get these things, and being bitten by ANY species of tick puts you at risk. Black-legged (deer) ticks are not the only bad ones. They ALL suck!

 

[Dragonfly]

I know someone locally who contracted Babesiosis right in NJ, and it took 2 bouts of high fever (105') before it was diagnosed. So yep, they're all out there, waiting. And they might just be in your own back yard, not necessarily deep in the Pine Barrens!

 

[Boyd]

I am very skeptical of the medical establishment in general. Recently questions were raised about how effective current treatments are: http://news.moneycentral.msn.com/provider/providerarticle.aspx?feed=AP&date=20080503&id=8583146

http://www.cbc.ca/health/story/2007/05/23/lyme-disease.html?ref=rss

For those of you who have been diagnosed, you have my full sympathy; I hope you find lasting relief. For everyone else, you really should learn about the benefits of treating your clothes with Permethrin. Since I started doing this 2 years ago, I don't even give ticks a second thought. It's pretty close to 100% effective in my personal experience, as long as you combine it with some common sense precautions.

Use the search function on this site for "Permethrin" and "Permanone" for lots of info.

 

[Dragonfly]

Thanks for the interesting article. My concern is that insurance might not cover more aggressive therapy, if the majority of the medical world "decides" that 4 weeks is all that's necessary. It still seems like there's a lot of conflict on how to treat Lyme, and no easy answers.

And you're so right about spraying clothes. I was out in the bogs the other day; bugs were flying all over, but none bothered me, since I sprayed first. Wouldn't it be nice if they made FRONTLINE for people??? Once a month and we'd be fine.

 

[Sue Gremlin]

And you're so right about spraying clothes. I was out in the bogs the other day; bugs were flying all over, but none bothered me, since I sprayed first. Wouldn't it be nice if they made FRONTLINE for people??? Once a month and we'd be fine.

That would be great, but Frontline is not a repellent, it's a contact active, meaning the tick isn't repelled by the chemical so it will still jump in you and at least attempt to bite. It is killed by coming in contact with the active ingredient. Even if you coated yourself with it, ticks would still feasibly be able to bite you and transmit disease.

Pyrethroid-class insecticides such as permethrin are still the best repellent for ticks for human use.

 

[Sue Gremlin]

I am very skeptical of the medical establishment in general. Recently questions were raised about how effective current treatments are: http://news.moneycentral.msn.com/provider/providerarticle.aspx?feed=AP&date=20080503&id=8583146

http://www.cbc.ca/health/story/2007/05/23/lyme-disease.html?ref=rss

I don't think it is fair to blame the medical profession. When a newly emerged disease shows itself, there's a lot of learning to be done before we have a handle on it. We knew that the spirochete that is responsible for Lyme disease can penetrate the blood-brain barrier, which is usually impervious to most things, including drugs, so it's actually plausible that long term antibiotic therapy would have a better chance of crossing that barrier and eliminating any bacteria that were hiding in there. We simply don't have any information about this stuff until we look at the epidemiological evidence. This is the case with Lyme Disease as well as anything else that pops up. There's no really good animal model for chronic infection with Lyme bacteria, so we are left to use information we have from our best attempts at curing the disease in humans. Epidemiologic study of what has already occurred is simply the best information we have.