Lyme's Disease

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Without going into a looong story, after baffling the docs for a year, they now THINK I have Lyme's Disease (notwithstanding the negative test results to date). I don't think this is disqualifying, and the treatment is antibiotics, so I think I'm still okay to fly. Am I right?
 
It probably depends on the antibiotic.

Please don't take my word...a medical doctor will see you post in a little bit.
 
Without going into a looong story, after baffling the docs for a year, they now THINK I have Lyme's Disease (notwithstanding the negative test results to date). I don't think this is disqualifying, and the treatment is antibiotics, so I think I'm still okay to fly. Am I right?

I have had a chronic case of it, that was not diagnosed until 10 years after I had symptoms of it (in retrospect, it was blatantly obvious; at the time, knee pain and fatigue were normal for a teenage and college student playing a lot of sports known to be hard on the knees). So I understand exactly where you're coming from. I tell everyone that if I hadn't gotten it, I'd have gotten an athletic scholarship, and I'd have gone to Harvard instead of Wake Forest. :)

The good news is that I had zero problems with medicals. I called the AME about it - he appreciated it because he hadn't encountered it in the aviation setting before. He did some research, I went in for the exam, and it didn't involve anything other than him explaining what he'd discovered and that he didn't consider it to be a problem absent some kind of actual symptom (e.g., a resultant heart condition, neural problems, etc.). There also weren't any issues with whatever pills I was taking.

So that's my experience. Good luck, with both the treatment and the medical.
 
That's the weird thing, I have no fatigue, no fever, no neck/head pain, just the knees.

Sequence went: MRI's, knee drainings with hydrocortisone injections, arthoscopic knee surgery to shave down sinova, more MRI's, prednisone to see if it was rheumatoid arthritis, more MRI's, - Docs tell me the only thing left is Lyme's. Structurally my knees are perfect with no signs of wear and tear on the joints. Problem is in the sinova only. Was in the right knee for 10 months and now just started in the left knee!

How long did it take on the treatments before you were considered cured?
 
That's the weird thing, I have no fatigue, no fever, no neck/head pain, just the knees.

Sequence went: MRI's, knee drainings with hydrocortisone injections, arthoscopic knee surgery to shave down sinova, more MRI's, prednisone to see if it was rheumatoid arthritis, more MRI's, - Docs tell me the only thing left is Lyme's. Structurally my knees are perfect with no signs of wear and tear on the joints. Problem is in the sinova only. Was in the right knee for 10 months and now just started in the left knee!

How long did it take on the treatments before you were considered cured?

It's been 6 years worth of treatment. Problem is that you don't really know if you're cured or not after you've had it for a long time. If the symptoms don't return after a lengthy period of time, that's when you know.

The long-term treatment is a pretty hot topic in the medical field, with a lot of accomplished doctors saying that long-term treatments are ineffective. My experience, anecdotally of course, has indicated differently.

In high school, I was repeatedly checked for mono and knee damage. Every time coming up negative. At the time it was: "you're 15, being tired isn't abnormal, and you're playing so many sports that of course your knees will hurt." In college, it got worse - there were times I couldn't walk up the stairs due to knee pain, yet there were no physical abnormalities. The diagnosis, of course, remained the same: "quit staying up late, and stop the sports [lacrosse, skiing, biking], and you'll be fine."

In law school, I had significant difficulty remembering what I had read the night before, in addition to all of the other symptoms. In the summer of my second year, after my entire immediately family was diagnosed clinically and through blood work, we thought it would be a good idea for bloodwork to be done on me. 'Lo und behold, it came back positive. We went over the history of my symptoms, and the doc figured, as best he could, that I picked it up the summer after 9th grade. I was 24 when I was diagnosed.

Immediately started a pretty intensive treatment (not IV, which is the option of last resort). Within roughly 90 days, every symptom was gone - no memory problems, no knee pain, no fatigue. I've since had a few flare-ups of those same problems, which indicates that it's either not gone or a new case - but short doses of antibiotics have taken care of it. As I understand it, this is where part of the debate over treatment comes in - there are several studies showing that long-term treatments do nothing about the long-term symptoms. As I said, my personal experience indicates differently - each one is less severe than the predecessor.

In retrospect, I could bleeping kick myself. Knee pain and fatigue - why in the heck did the possibility of Lyme Disease, on the Eastern Shore of Maryland, a veritable tick heaven, never occur to me? I mean, seriously, did I have my head in a bucket of sand? One of those things that happens. But I still tell people I'd have gone to Harvard Law rather than Wake Forest. :redface:

FYI, there are some really good resources out there. ILADS is one; there are a few others. But, be careful what you trust on the interweb - there is a lot of information that is absolute crap.

Best of luck.
 
That, David, is a very good summary. The diesase is a subtle as syphilis. After all the bug is from the same family.

Dr. Bruce
 
Very difficult disease as there are often false postives and false negatives, so you never really know "for sure" if you have it or don't or still have it or don't. It has a nasty habit of resurfacing years later with a requirement for another round of antibiotics which are best given I.V. for this treatment.

Not a doctor, so take it FWIW.
 
That, David, is a very good summary. The diesase is a subtle as syphilis. After all the bug is from the same family.

Dr. Bruce

Thanks, doc - I was half-expecting someone more knowledgeable than me to write:

"What you've just said is one of the most insanely idiotic things I have ever heard. At no point in your rambling, incoherent response were you even close to anything that could be considered a rational thought. Everyone in this room is now dumber for having listened to it. I award you no points, and may God have mercy on your soul."

:)
 
"What you've just said is one of the most insanely idiotic things I have ever heard. At no point in your rambling, incoherent response were you even close to anything that could be considered a rational thought. Everyone in this room is now dumber for having listened to it. I award you no points, and may God have mercy on your soul."

:)

Well, this is not the red board....

That said. The diagnosis of chronic lyme disease and the treatment with long-term or high-dose antibiotics without proof that there are actual live bugs present are somewhat controversial. I am glad it worked for you, but for completeness sake it should be pointed out that long-term antibiotic treatment is not without associated risks.

An article from the New England Journal of Medicine in 2007 illustrates the critical view of 'chronic lyme disease' and its current treatment:

http://content.nejm.org/cgi/content/full/357/14/1422

Its a bit medicolese reading, but someone who can pass the FAA written should be able to get the idea.
 
Without going into a looong story, after baffling the docs for a year, they now THINK I have Lyme's Disease (notwithstanding the negative test results to date). I don't think this is disqualifying, and the treatment is antibiotics, so I think I'm still okay to fly. Am I right?


Lyme disease can be a very serious condition, and can lead to death. My best friend was killed as a result of having Lyme disease and not getting diagnosed properly. Sad thing, too, as we grew up in SE Connecticut, just 10 minutes from Lyme, Connecticut, the disease's namesake. The disease ended up damaging his kidneys and heart. He was on peritoneal dialysis bags for several years before they found matching organs, but by the time of the transplants his body was just too weak and he lasted less than a month after the surgery.

Make sure that you treat it and monitor your condition!
 
Well, this is not the red board....

That said. The diagnosis of chronic lyme disease and the treatment with long-term or high-dose antibiotics without proof that there are actual live bugs present are somewhat controversial. I am glad it worked for you, but for completeness sake it should be pointed out that long-term antibiotic treatment is not without associated risks.

An article from the New England Journal of Medicine in 2007 illustrates the critical view of 'chronic lyme disease' and its current treatment:

http://content.nejm.org/cgi/content/full/357/14/1422

Its a bit medicolese reading, but someone who can pass the FAA written should be able to get the idea.

No doubt, and thanks for pointing that out. :yes:
 
I had it undiagnosed for something like 16 years. Ultimately my doc did find babesia titers. Not even a ton, truth be told - but they were there.

I had a relatively mild case - chronic knee pain, no memory issues/brain fog (that I am aware of, haha). I've been "cured" (whatever that means) since 2006. I imagine 20 yrs ago when I apparently contracted it, it simply wasn't as well known nor were regular docs clued in to look for it as a matter of course. David, it may be the same with you if that was almost 10 yrs ago...

However, it did ultimately result in blindness in my right eye. The disease triggered an autoimmune response (luckily in only one eye - uveitis) which required daily (and still daily) doses of steroid eye drops. The steroids caused glaucoma, ultimately, which robbed me of the vision in that eye. This was despite heroic efforts by my eye doctor - I was VERY closely monitored but when the pressure went up catastrophically practically overnight, little could be done in time. I had a trab done but it was a little too late.

I've had a few medicals with the one-eye blindness. Hoops to go through, not in surmountable and in fact I guess it's even a little easier these days.

Hope this helps a little?
 
I had it undiagnosed for something like 16 years. Ultimately my doc did find babesia titers. Not even a ton, truth be told - but they were there.

I had a relatively mild case - chronic knee pain, no memory issues/brain fog (that I am aware of, haha). I've been "cured" (whatever that means) since 2006. I imagine 20 yrs ago when I apparently contracted it, it simply wasn't as well known nor were regular docs clued in to look for it as a matter of course. David, it may be the same with you if that was almost 10 yrs ago...

However, it did ultimately result in blindness in my right eye. The disease triggered an autoimmune response (luckily in only one eye - uveitis) which required daily (and still daily) doses of steroid eye drops. The steroids caused glaucoma, ultimately, which robbed me of the vision in that eye. This was despite heroic efforts by my eye doctor - I was VERY closely monitored but when the pressure went up catastrophically practically overnight, little could be done in time. I had a trab done but it was a little too late.

I've had a few medicals with the one-eye blindness. Hoops to go through, not in surmountable and in fact I guess it's even a little easier these days.

Hope this helps a little?

The best guess is that I got mine ~10 years before the diagnosis, which was the summer of 2004. So it was 16 years ago. It just wasn't something that was really on the radar at that point. I don't blame anyone for that (as in, not at all, seriously); but I could kick literally kick myself for not thinking of it - I knew all about Lyme Disease. What none of us knew, however, was that the telltale rash doesn't always occur...and that was the dead (and I think only real) giveaway 16+ years ago.

My diagnosis was based on a combination of clinical diagnosis and bloodwork. It was a "based on your symptoms, I'm sure you have LD, but we'll do some tests, too." The tests were Western Blot, done by a lab using both the CDC guidelines as well as another kind of guidelines the name of which I can't remember anymore; both guidelines indicated indisputable positives.

Anyway, I don't mean to make this thread about me; it isn't. I do hope, however, my personal experiences are of some help to the OP - it's an area where I think I've had more experience than most.
 
Okay, I guess I'll come out of the "closet" so to speak (I get tired of logging out and logging back in to post anonymously).

Any idea how long it can take for symptoms to develop? My first indication was May 10th, 2009. I did live in CT from 1996 to 2001 but 8 years seems a rather long time.

I still haven't tested positive but the doctors say once they've eliminated everything else then that must be it!
 
Lyme is endemic in large parts of the Midwest though. I was tested for it last summer because of a suspicious bullseye rash. (I'd done some hiking in an area one county over from a medium risk area.) See the map at:

http://www.aldf.com/usmap.shtml

South central WI and northern IL are medium to high risk. I'm not sure exactly where St. Charles is but your area is at least medium risk.
 
Shoot, that's me above. I keep forgetting you have to specifically log in on this forum to not post anonymously.
 
I had it undiagnosed for something like 16 years. Ultimately my doc did find babesia titers. Not even a ton, truth be told - but they were there.

I had a relatively mild case - chronic knee pain, no memory issues/brain fog (that I am aware of, haha). I've been "cured" (whatever that means) since 2006. I imagine 20 yrs ago when I apparently contracted it, it simply wasn't as well known nor were regular docs clued in to look for it as a matter of course. David, it may be the same with you if that was almost 10 yrs ago...

However, it did ultimately result in blindness in my right eye. The disease triggered an autoimmune response (luckily in only one eye - uveitis) which required daily (and still daily) doses of steroid eye drops. The steroids caused glaucoma, ultimately, which robbed me of the vision in that eye. This was despite heroic efforts by my eye doctor - I was VERY closely monitored but when the pressure went up catastrophically practically overnight, little could be done in time. I had a trab done but it was a little too late.

I've had a few medicals with the one-eye blindness. Hoops to go through, not in surmountable and in fact I guess it's even a little easier these days.

Hope this helps a little?
Woodstock, Babesiosis is different from b. burgdorferi but shares with it occult symptoms and difficulty in diagnosis. You do get it from ticks, too, but is a protozoan, rather than a bacterium.

I'm just glad yours was caught though barely in time :)
 
Maybe it's the psychosomatic in me, but my recent achy knees and tiredness have me fearing Lyme disease now! Of course, it's probably just Growing Old! :yes:
 
DNA Connexions $650 test
1) Drink a bunch of water
2) Do a strenuous workout for one hour
3) Urinate and drink more water
4) Capture your next urination with the supplied kit
5) Overnight sample to Colorado lab

If B. Burgdorferi DNA is in you it will be found.

Wow, thanks! I’ve always come up negative for Lyme but suffer a lot of non-specific rheumatology symptoms and they have tested me for a bunch of autoimmune diseases and come up with no hard diagnosis. One doctor put me on doxycycline for two years, he said, just in case it’s a false negative. I improved but not completely and didn’t keep it up. Fast forward to now, I have a new swollen and hot joint I’m having trouble managing.
 
I've had Lyme twice a year or two apart, once with Babesiosis at the same time. Never had the rash, but I live in the woods not far from Lyme, CT so doctors are willing to test for it, both times sypmtoms were alternating sweating/shivering and just feel like crap. Both times I felt better within one day of starting a week long antibiotic course. That was over 5 years ago, no trouble since.

Rushie, ask your doctor about "sero negative" rheumatoid arthritis.
 
I live in Lyme, had the disease (one actually never gets rid of it), couldn't pick up a coffee cup... and my oldest son is suffering horribly because of it. The crummiest part of Lyme is "false negative" testing, meaning, a person could have it, but the "tests" come back negative. The science is inexact, the pharmaceuticals are years behind on a cure and there is scant Govt funding. My wife has spent scads of time investigating and one fix that has worked fairly well, believe it or not, is good old Grapefruit Seed Extract from a health food store. The very best extract, in her opinion, is from Douglas Labs (online).
 
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