Lyme Disease

**spindrift** · 04-28-2006, 10:42 PM

Those of you downplaying this disease are flat out wrong. You are doing the other members here a huge disservice.

It is a very big deal disease. While its course and effects are highly variable, it is actually very serious. If caught and treated early, it is often not such a big deal. If not caught early, it can be debilitating, and even life threatening. I know several people who have had serious complications. One nearly died and is only now, two years later, getting back to normal.

If the disease is not caught and treated early, it enters the central nervous system and other organs - and treatment can become a major ordeal. Think in terms of ports and months of high powered IV antibiotics.

Unless you are personally knowledgeable, the odds of early detection of Lyme are pretty slim outside of the New England and mid-Atlantic states. Two well regarded experts I've talked with (both very mainstream) felt that Lyme is underdiagnosed/misdiagnosed by at least a factor of 10 in much of North America. Informed, as usual, is good. I'm certainly not saying everyone should run out and panic. But is smart to be "Lyme aware" and to take the disease seriously if you suspect you have contracted it.

FWIW, Lyme entered my life (and cloudpeak's) three years ago when our son, a week back from a camping trip in Leavenworth WA and a day after complaining of a severe headache, wandered downstairs with this:

Because this rash was pretty much classic EM, the primary symptom that allows early diagnosis (thanks Google), we were able to get appropriate treatment and his case did turn out to be a small blip. However, as cloudpeak alluded, we went through a lot of crap - and I mean a whole lot - to make sure it was just a small blip.

A few final thoughts... The ticks that carry Lyme are usually very small. They are not the big dog tick most of us notice. The small ones are the size of a period on a page of text. Literally. Very easy not to notice. I saw the one in my son's arm the day he got back and I did not even recognize it as a tick. He asked me to look at what he described as a "weird mosquito bite". I just thought it was some random minor insect or spider bite with a tiny spec of a blood clot in it. Totally fooled me - and I've dealt with ticks plenty of times. If you ever notice a rash like the one in the picture above, think Lyme. Especially if you have been in tick-land and have had any sort of joint pain or headaches in the same timeframe. And consider reading the books cloudpeak mentioned. Good reads and really informative if you spend any time in tick-land.

**Theodore** · 04-28-2006, 10:44 PM

Originally Posted by P_McPoser

Bah, at least I live where I can see mountains.

Yeah! Well.... at least I live where I can see tornadoes...

Originally Posted by cloudpeak

My son's tick was also as tiny as a period like this one. Until the bull's eye rash (erythema migrans) and the splitting headache showed up, we thought the tick was a small scab.

Chances are...

**teledave** · 07-05-2006, 08:37 AM

Bump for the ticks.

Actually my wife just had a tick bite about three weeks ago and developed the "bullseye" rash about 3 days later. When she showed it to me I immediately knew what it was, or at least had a very strong suspicion, but I didn't really know how I knew that. Now, I remember seeing it in this thread.

THe doctors didn't want to believe it was Lyme disease until I showed him a picture that I had Googled up and printed to take with us. They ran a blood test to diagnose it and confirmed my suspicions.

One 10 day cycle of antibiotics later the rash is gone and everything seems to be fine. She has to go back for a retest to confirm that she is clear sometime next week. From everything I read about it it's not a big deal if you catch and treat it early, but if you wait until you develop other systemic symptoms it's a bitch to both treat and get rid of.

**iceman** · 07-05-2006, 08:50 AM

Dave, from everything I've read 10 days of antibiotics is definitely not enough. A month minimum is the recommendation I've heard and I've heard plenty of people say two months is optimal. The problem with a short course of antibiotics is that it knocks the spirochete numbers back to nearly unmeasurable amounts without completely killing all of them and then the little bastards have a chance to multiply over months and even years and when symptoms reappear they may already be established plus enough time may have passed since the original infection that no one even thinks of Lyme disease when symptoms reappear. Best to err on the side of safety.

**GoldMember** · 07-05-2006, 08:55 AM

In looking at the map, we're in a no-risk area but there is one dot shown to indicate that there was one reported case of Lyme's in our county in 2004. Ironically, I remember that case as it was our County Health Director, who is an MD and went undiagnosed for some time. She was sick with it for several months. She had apparently contracted it on a trip to the east but didn't recognize the symptoms herself. I just remember her being on TV commenting on her illness and her embarassment for not having diagnosed it herself. Nasty stuff.

**spindrift** · 07-05-2006, 10:20 AM

Originally Posted by iceman

Dave, from everything I've read 10 days of antibiotics is definitely not enough. A month minimum is the recommendation I've heard and I've heard plenty of people say two months is optimal.

First - I'm no MD. However, when we went through the family Lyme crisis a few years ago, I did a whole lot of reading & contacted a couple of East Coast docs who are arguably considered regional/international Lyme experts respectively. These guys were totally unconnected - one was in New England and the other in Mid-Atlantic/South. Both indicated that, at that time, thinking was starting to run toward shorter courses of antibiotics for early diagnosis treatment. Something like 11-14 days. This was in contrast to the frequently cited 20-30 day cycle that was fairly typical. Interestingly, both of these guys suggested splitting the difference. They felt that 30 days was a long time to have someone on antibiotics unless you really had to. They also felt that while 10+ was starting to look good, the evidence was not all in yet & that a few extra days of antibiotics would probably not hurt anything & might insure the little buggers were wiped out. We ended up with the kid on antibiotics fof 18 days. Both of these guys are well regarded mainstream medical type folks.

In general, the really long courses seem to be for later stage treatment. They typically involve very high powered drugs - often administered intravenously. My friend who nearly died from Lyme (and suffered through Bell's palsy for a couple of years until it subsided) actually had a chemo style port for the IV antibiotics... It was a very big deal.

This is a topic that warrants lots of reading & self-advocacy. My info is a few years old and it is quite possible that treatment standards have been changing as more has become known about the disease. The more you know...

**lemon boy** · 07-05-2006, 10:23 AM

Pulled a wood tick out of the big dog the other day, as he hadn't been anywhere for a week or so we have them in the yard somewhere

Both dogs are now wearing flea/tick collars which IME work well.

**spindrift** · 07-05-2006, 10:24 AM

Originally Posted by GoldMember

In looking at the map, we're in a no-risk area but there is one dot shown to indicate that there was one reported case of Lyme's in our county in 2004. Ironically, I remember that case as it was our County Health Director, who is an MD and went undiagnosed for some time. She was sick with it for several months. She had apparently contracted it on a trip to the east but didn't recognize the symptoms herself. I just remember her being on TV commenting on her illness and her embarassment for not having diagnosed it herself. Nasty stuff.

Both the docs I mentioned in the above post felt that in areas where Lyme is relatively infrequent, it tends to be massively underdiagnosed. Independently, both guessed it was under or misdiagnosed by a factor of 10 in places like WA state. My kid picked up his Lyme carrying tick near Leavenworth. All the stats would have told you that this could not have happened...

**Stymie** · 07-05-2006, 11:54 AM

Live in Old Lyme Connecticut. Have had Lyme disease twice in 7 years. The symptomology of both events were small irregular rashs (neither one could be considered a bulls-eye) coupled with a short duration fever and chills. As someone mentioned earlier the docs around here are well aquanted with the disease and prescibe oral antibiotics as a matter of course and don't put a lot of faith in the bacterial blood titer. I was given doxycycline both times for 21 days. I have not experienced any other symptoms...

We routinely do tick checks on our children and have removed several deer ticks over the years from them. No lymes disease for them yet...

**hev** · 07-05-2006, 08:54 PM

wow. suprised to see two other old/east lymers in here. I grew going to Point O' woods every summer. good times.

**Blatant** · 07-06-2006, 05:10 PM

this is a dog tick, not a deer tick. Know the difference. sorry the pic is so blurred but it's the size that matters. This is one that got on my sister but didn't get the chance to fill up. Got it off.

No additional pics of said sister, you perv's.

werd
b

**crackboy** · 06-05-2008, 04:45 PM

Hey sorry to resurect this dead thing but had some questions for those who have had lymes.

So this past fall i got the lymes disease. Didn't find a tick but had a rash develop into the bullseye. while not as obvious as the picture on the first page, it had a relative bullseye swath. That was a friday. I photo-documented the rash which was a good thing since it went away in only 2-3 days.
I had the extreme fatigue and had joint pain by the monday and was able to see a school doctor. Was able to convince him that it was lyme, but all he really had was the photos i took. i took the blood test and went on 3 weeks of cipro. Blood came back negative, but still did the antibiotics. It really helped alot. fast foward to now and i have been getting the fatigue again. while not quite as bad as when i first had it, it definitly does not seem like normal tiredness. Not only that but i feel like i tire a whole lot faster than i should be

Now i am a west coast person so Lymes is pretty unheard of out here.

For those of you that have had lyme's, is the fatigue a long lasting thing even with antibiotics? Should I go back in to the docs to get tested again? I was negative the first time.

thanks

**stuckathuntermtn** · 06-05-2008, 05:27 PM

do you have a fever? It could be erichiosis (sp?). which is like Rocky Mountain Spotted Fever. It is possible to get Lyme twice. Did you take the antibiotics once a day for the regiment of the drug? If not you didn't kill it all. It's a terrible thing, but you may need to do another 2 or 3 weeks of a different antibiotic. DON'T SKIP DOSES! fwiw, I used to live in Westchester, NY. I went years without getting Lyme Disease and then finally got a bulls eye one day. I got antibiotics the next day and never had symptoms. Pretty much everyone has gotten it there, even the not-outdoorsy types.

**beaterdit** · 06-05-2008, 05:29 PM

Originally Posted by spindrift

Those of you downplaying this disease are flat out wrong. You are doing the other members here a huge disservice.

It is a very big deal disease. While its course and effects are highly variable, it is actually very serious. If caught and treated early, it is often not such a big deal. If not caught early, it can be debilitating, and even life threatening. I know several people who have had serious complications. One nearly died and is only now, two years later, getting back to normal.

If the disease is not caught and treated early, it enters the central nervous system and other organs - and treatment can become a major ordeal. Think in terms of ports and months of high powered IV antibiotics.

Unless you are personally knowledgeable, the odds of early detection of Lyme are pretty slim outside of the New England and mid-Atlantic states. Two well regarded experts I've talked with (both very mainstream) felt that Lyme is underdiagnosed/misdiagnosed by at least a factor of 10 in much of North America. Informed, as usual, is good. I'm certainly not saying everyone should run out and panic. But is smart to be "Lyme aware" and to take the disease seriously if you suspect you have contracted it.

FWIW, Lyme entered my life (and cloudpeak's) three years ago when our son, a week back from a camping trip in Leavenworth WA and a day after complaining of a severe headache, wandered downstairs with this:

Because this rash was pretty much classic EM, the primary symptom that allows early diagnosis (thanks Google), we were able to get appropriate treatment and his case did turn out to be a small blip. However, as cloudpeak alluded, we went through a lot of crap - and I mean a whole lot - to make sure it was just a small blip.

A few final thoughts... The ticks that carry Lyme are usually very small. They are not the big dog tick most of us notice. The small ones are the size of a period on a page of text. Literally. Very easy not to notice. I saw the one in my son's arm the day he got back and I did not even recognize it as a tick. He asked me to look at what he described as a "weird mosquito bite". I just thought it was some random minor insect or spider bite with a tiny spec of a blood clot in it. Totally fooled me - and I've dealt with ticks plenty of times. If you ever notice a rash like the one in the picture above, think Lyme. Especially if you have been in tick-land and have had any sort of joint pain or headaches in the same timeframe. And consider reading the books cloudpeak mentioned. Good reads and really informative if you spend any time in tick-land.

Damn, that's a perfect bullseye.

Been there, done that, it sucked. Felt like when I had Mono, except for six months.

I never got the rash and the blood test, at least at the time was "inconclusive". Maybe it was just some kind of STD.

Almost everyone I knew growing up in NY has had it.

Teh suxxors...

**crackboy** · 06-05-2008, 05:50 PM

yup did the full antibiotics regiment. it sucked worse than the lymes towards the end. Don't think i ever really had a fever, like i said, i had it in the fall. Don't have a fever now either.

**Blatant** · 05-18-2009, 12:48 PM

Here it is again folks, back from the archives, as the time has arrived. Keep a sharp eye out there, TICKS Suck....

http://www.msnbc.msn.com/id/30725967/

**Lonnie** · 05-18-2009, 01:00 PM

Once upon a time I had a job stomping around in the woods of eastern NC. Got into a nest of deer ticks. Literally, I had HUNDREDS of them on my pants leg. Was driving down the road when I noticed. Stripped down to my boxers on the side of the country road I was on, pulled out the deep woods off and fired off about 1/4 of the can on that spot. If I would have had a change of clothes with me, I would have burned those pants right there. When I got home, I did a more thorough check, and had the ex pull the ones off the places I couldn't see/reach. We lost count at 50 something. Not something I want to repeat.

**BigDaddy** · 05-18-2009, 01:02 PM

Thanks Blatant... that's good scary sheet, but relevant. I did some yard work the other day and found 6 deer ticks on me. (I live in the burbs of Boston) None attached, but it's only a matter of time. I called an "organic tick control expert" today, so maybe there is a way to knock down the population.

**Grange** · 05-18-2009, 01:38 PM

In WI deer and wood (dog?) ticks are common. My experience tells me that there are more ticks, especially deer ticks, on the western side of the state. After running my dog it was not uncommon to pick 30 off her on the ride home alone when I lived on the west side of the state. On the east side I usually will find less than 10 on my dogs. I use either Frontline Plus or K-9 Advantix so I will also find dead ticks on the doggie bed. Hell yesterday I took my dogs for a run in the woods and pulled three wood ticks off myself but didn't find any on the dogs.

I've gotten so used to them that they don't phase me anymore, though I will check myself for ticks when I leave the field. I've have a few over the years that were starting to bite (piece of skin in their mouth when pulling them off) when I found them, but only had one that was truly embedded. I do get my dogs a lymes vaccine every year.

**PaSucks** · 05-18-2009, 02:28 PM

I found a dog tick on me at work a few weeks ago and did some research. According to a few websites it is now believed dog ticks can also spread lyme disease, although most sites I visited disputed this. Also, it is believed that the bacteria is transmitted as soon as the bite occurs, not 36 to 48 hours after the tick starts feeding.

**ProHoHater** · 05-18-2009, 04:05 PM

Killed my uncle and almost killed me I was the second case ever reported in Hawaii. Since no one here has a fucking clue about Lyme disease, or much of anything else, and since I did not show any signs until a full month after coming back from a trip in Connecticut, I wasn't diagnosed until I was in the hospital on intravenous. I saw at least ten different doctors who were all scratching there fucking heads and I was freaking the fuck out. The moral....don't get sick in Hawaii. Oh and I might add it was pretty fuckin painful as well. I am pretty sure every joint in my body has been permanently impaired.

**Blatant** · 07-26-2010, 01:55 PM

***********BETTER LATE than never annual bump*******

shit is in full swing.

**HankScorpio** · 07-26-2010, 03:58 PM

Originally Posted by ProHoHater

Killed my uncle and almost killed me I was the second case ever reported in Hawaii. Since no one here has a fucking clue about Lyme disease, or much of anything else, and since I did not show any signs until a full month after coming back from a trip in Connecticut, I wasn't diagnosed until I was in the hospital on intravenous. I saw at least ten different doctors who were all scratching there fucking heads and I was freaking the fuck out. The moral....don't get sick in Hawaii. Oh and I might add it was pretty fuckin painful as well. I am pretty sure every joint in my body has been permanently impaired.

Holy shit, I thought I was the only one who saw stupid doctors about Lyme. Lyme disease fucking sucks. It almost put my in a wheelchair

When I was 18 I had Lyme 2 months before any doctor could figure it out. I don't know when I got it but it got so bad after the first month that I could barely walk, I couldn't even feel my legs. The doctors thought it was a slipped disc in my back, but an MRI showed nothing. They were baffled, so they put me in the hospital for a week or so and ran a shit load of tests. That sucked, I thought I was going to be a cripple. Nothing could explain why my legs didn't work.

Finally, a nuerologist suggested out of the blue that there was a slim chance it was Lyme. The only symptom I had was an irregular heartbeat. Turns out it was Lyme. They caught it just in time, any longer it would've permanently damaged the nerves in my legs.

They gave me a IV with the anti-biotic all day for 4 days straight. I felt better the instant that shit hit my blood stream. Amazing what that shit does.

I hobbled out of the hospital (I couldn't even stand before the anto-biotic). Long story short, 6 months of physical therapy later I was skiing again. My balance is still a little fucked up, but I'd call it a 99.5% recovery.

I also got the Lyme vaccination afterwards, I don't think its on the market anymore, this was in 1998. It didn't have the best rate of prevention, but its better than nothing.

Bottom line is check for ticks, and when you find one torture it and burn it alive. Little fuckers,

**Blatant** · 05-06-2011, 03:57 PM

annual bump.
Don't forget.

**Sparky** · 05-06-2011, 04:26 PM

Timely reminder, however with mild winters we often get them year round. They are a work hazard. I've burnt them out with cigarettes, matches, pulled 'em, and drowned them in grease and alcohol over the years before learning tweezers are best.

Classic photo Spindrift.

They are evil shits. A 40yo contractor/colleague of mine had his central nervous system nuked by them, and was transformed into a vegetable in the space of a few months. My missus is a medic and has seen it happen a few times. I consider I've got of lightly but I'm 99% certain some meat allergy I've experienced has been down tick bites:

Study describes "delayed anaphylaxis," a new notion in diagnosing food allergies
May 14, 2009

Spring is here and more of us are heading outside to enjoy jogging, hiking, gardening and camping. Wherever our outdoor adventures lead, there is a good chance that we'll come in contact with one of nature's most notorious hitchhikers, the tiny seed tick.

New NIH-funded research from the University of Virginia Health System suggests that it is wise to be wary of the seed tick because its bite may set off a cascade of events that not only defy current thinking about food allergies, but also create serious health risks for people with certain blood types.

In a paper published in the February 2009 Journal of Allergy and Clinical Immunology, UVA researchers describe a novel and severe allergic response, which they call delayed anaphylactic shock. The reaction occurs three to six hours after patients eat beef, pork or lamb. Symptoms begin with itching that intensifies as hives develop on the skin's outer and deeper layers. Itching quickly escalates to swelling, intestinal irritation and the alarming, life-threatening symptoms of anaphylaxis: airway constriction, chaotic heart beat, a rapid drop in blood pressure and loss of consciousness.

"Our conventional understanding is that anaphylaxis happens within seconds or minutes of exposure. The notion that it can be delayed for several hours is a paradigm altering discovery," says senior study investigator, Thomas Platts-Mills, M.D., Ph.D., Professor of Medicine and Microbiology at UVA and head of the Division of Allergy and Clinical Immunology.

The researchers found that the delayed response is being triggered by an IgE antibody that binds to a sugar molecule known as galactose-α-1,3-galactose (alpha-gal). The antibody was found in the serum of all 24 adults assessed in the study and in more than 100 other individuals, including six children, now being tracked by the UVA study team.

"Alpha-gal is an unexpected culprit," explains lead author, Scott Commins, M.D., Ph.D., an allergy and immunology fellow at UVA who will join its medical faculty in July. "Today's textbooks tell us that allergic reactions are caused by proteins in food, pollen, dander and venom. They are not supposed to be caused by sugars like alpha-gal."

UVA researchers are still determining what triggers the production of alpha-gal antibodies. So far, evidence strongly suggests that tick bites are the cause. "Eighty percent of our study cohort reported being bitten by ticks either weeks or months before symptoms began. When we consider all the patients in our database, more than 90 percent had tick bites," Commins notes. "We are continuing to investigate this link by gathering patient information from a network of allergists around the U.S. and in four other countries."

"In our findings, we refer to ‘seed' tick, which is the generic term for the larval form of ticks. Ticks such as dog tick, deer tick, Lone Star, etc. are the adult forms. We believe all types of ticks can trigger this reaction," Commins explains.

Blood typing performed at UVA indicates that individuals with Type B or AB blood seem protected from developing IgE to alpha-gal. Commins is concerned that people with other blood types may be unaware of the risks posed by tick bites. "A lot of people suffer symptoms for years without knowing the cause. We worry that the number of undiagnosed or potential cases of alpha-gal sensitivity may be on a dramatic rise," Commins says. "However, we'll need more data to make formal projections."

The UVA study yielded other paradigm-challenging findings. First, the allergist's key diagnostic tool, the skin prick test, proved ineffective in detecting red meat allergy in study patients. (As part of the UVA research effort, Commins developed a skin testing technique to identify this allergy.) Second, most patients began experiencing symptoms as adults, defying the common belief that food allergies rarely develop after childhood.

According to Commins, the study is prompting new thinking about food allergies as well as continued investigation. "Our observations have turned a lot of conventional wisdom upside down while raising a number of important questions," he notes. "We still need to figure out what triggers production of IgE to alpha-gal, why some blood groups are protected and why the allergic reaction is delayed and so severe."

On a practical note, Commins advises quick removal of hitchhiking ticks and monitoring of bite sites. "People who develop the red meat allergy often report they experienced significant itching and redness around the bites," he explains. "Anyone who is concerned about developing the alpha-gal antibody after tick bites should have a screening test. It's far safer than waiting for an allergic reaction to occur."

In addition to Platts-Mills and Commins, the UVA study co-authors were Shama M. Satinover, MS, Jacob Hosen, BS, Jonathan Mozena, MD, Larry Borish, MD, Barrett D. Lewis, MD, Judith A. Woodfolk, MBChB, PhD.

More information about ongoing alpha-gal research at UVA can be obtained from Commins via email, spc7w@virginia.edu, or by phone (434.982.3958 or 434.924.5917).

http://corporate.uvahealth.com/news-...rm=anaphylaxis