View Full Version : Lyme Disease in general
Hey All.... recently got diagnosed with Lyme Disease from general camping (not near the AT). I'm just finishing up the antibiotics and gonna make a follow-up with my MD...I think I caught it right away but still knocked me down on the couch for a few days. Anyone have any insight, experiences and such? :-? Just kinda looking for info from real-life people, ya know?
Thanks!
Hi mtbest,
I live and hike a lot in New Jersey right in the midst of one of the worst Lyme areas. I've had it, my son has had it, my dog has had it. Many of my neighbors and friends have had it.
A good friend got it many years ago before it was well characterized/diagnosed and she suffered significantly. She developed heart problems and at one point was blind. However this was because she wasn't diagnosed for at least ten years after onset.
Generally what I have seen is that with a good course of antibiotic therapy early on the symptoms disappear. There is some controversy over the persistence of the spirochette after infection but nobody I know has had problems after early antibiotic therapy.
I've read a lot about it over the years and in fact am just finishing a new book "Cure Unknown: Inside The Lyme Epidemic" by Pamela Weintraub. It's the most in depth treatment I've read - a little scary but being well informed is the best defense.
I'm glad to hear you recovered so quickly. Don't let it keep you out of the woods. I was fearful for a lot of years and have just decided to be aware but not afraid.
Just Plain Jim
09-03-2008, 16:30
I hiked the SNP back in 2006 and caught the little devil. Being from Alabama, we had no idea what was happening to me. It took the doctor 15 vials of my [precious] blood and my wifes insistance to discover that I had a bad case of Lymes disease.
Let me think...fever, chills, Bells Palsy, loss of appetite, loss of sleep, loss of 20 lbs. double vision.
3 weeks of medication and finally [sort of] back to noral.
Just Plain Jim
09-03-2008, 16:32
[quote=Just Plain Jim;692153]I hiked the SNP back in 2006 and caught the little devil. Being from Alabama, we had no idea what was happening to me. It took the doctor 15 vials of my [precious] blood and my wifes insistance to discover that I had a bad case of Lymes disease.
Let me think...fever, chills, Bells Palsy, loss of appetite, loss of sleep, loss of 20 lbs. double vision.
3 weeks of medication and finally [sort of] back to normal.
Hammock Hanger
09-03-2008, 18:16
I had a really bad case of it back in 2002, was hospitalized for 4 days. It knocked the crap out of me. I had a number of issues for a few months but gradually got back to my normal self, sort of.
Occasionally I get an area on either of my arms that feels like I am being bitten by red ants. It hurts like hell and I scratch at it until I bleed. NO topical ointment will help.
The Dr says it has to do with the nerves not the skin and she seems to think it is related to the Lyme. It comes and goes every year for a month or two. This year I have had it since May and I am going insane with it some nights, when it seems to be the worse.
NICKTHEGREEK
09-03-2008, 18:57
Hey All.... recently got diagnosed with Lyme Disease from general camping (not near the AT). I'm just finishing up the antibiotics and gonna make a follow-up with my MD...I think I caught it right away but still knocked me down on the couch for a few days. Anyone have any insight, experiences and such? :-? Just kinda looking for info from real-life people, ya know?
Thanks!
I had heart block arrythmia and the hospital ran a lyme panel that came back negative. The doc said it's a common side effect of lyme. I'm not a fan of on-line medical help but make sure your health professionals know you are at a high risk of lyme.
My son and I each contracted Lyme's disease one year ago while hiking on the AT south of Harper's Ferry. I had Bell's Palsey and just felt like crap for a few days -- spent one night in the hospital while the doctors studied me to see if it indeed was Lyme's disease and not a stroke. My son's symptom were mostly flu-like. Started treatment early, as did my son, and neither of us has any noticeable symptoms. Seems if you catch it early enough, most of the horrible symptoms we hear about are prevented.
good luck
john gault
09-03-2008, 19:42
[quote=Hammock Hanger;692183]I...Occasionally I get an area on either of my arms that feels like I am being bitten by red ants. It hurts like hell and I scratch at it until I bleed. NO topical ointment will help...[quote]
I get the same thing, irritating as hell. Lyme Disease is a bi*ch.
knicksin2010
09-03-2008, 19:52
I spent a week in the hospital because they were concerned that there was more to it than Lymes. I couldn’t walk, talk, and was so confused I couldn't even give the correct month. I had about 30 of the long list of symptoms. I was on iv antibiotics for 8 weeks, had to tape my eyes shut at night, and had to tape one eye shut during the day because of the double vision. It took a certain amount of stubbornness to get to this point, but luckily I haven't had it come back. The double vision took nearly 3 months and there was some concern it wouldn't go away. The scariest thing was being told I had inflamation around my optic nerve and that could cause blindness.
Hammock Hanger
09-03-2008, 20:19
[quote=Hammock Hanger;692183]I...Occasionally I get an area on either of my arms that feels like I am being bitten by red ants. It hurts like hell and I scratch at it until I bleed. NO topical ointment will help...[quote]
I get the same thing, irritating as hell. Lyme Disease is a bi*ch.
You too! Man it drives me nuts.
Years ago I went out hiking and must have brought back a tick that liked my husband better, cause it crawled over to him. He wound up with Bell's Palsy and didn't even hike. He never let's me forget it either. :rolleyes:
Wow. Thank you all for your input.....I feel terrible that you all suffered that bad though. I had all of the symptoms mentioned above with the exception of the vision problems and the "red ants". Most everything I had I could handle......except for the confusion. Even simple things like making a sandwich...ugh. But that part of it was very brief.
Thank you all again for your replies....I greatly appreciate it.
Not that this post has to end......I'm sure there's many more out there who would like to share.
GoldenBear
09-04-2008, 13:55
I hate to be crass about having Lyme Disease BUT
.
.
check with your doctor about any local testing laboratories that will pay you for your plasma (NOT blood) after you've been positively exposed. I got paid travel expenses plus $100 PER VISIT for such donations, and I could make donations twice a week. Basically, labs need your anti-bodies to ensure their test equipment is properly calibrated, and will gratefully pay you for giving them what they need. It's not a donation -- they're PAYING you for what you have and what they want.
You'll be asked the same medical questions that one is asked prior to giving blood ("At any time in your life, have you ever had sex in exchange for money or drugs?"), so you may choose to avoid the questions and not go. Or you may already know you can't give blood or plasma. Or you may decide you just don't like being poked and drained for money. But if $100 for a couple hours of your time sounds good, ask your doctor.
Land of the Tick: home of the Plague.
After having a severe case of Lyme's during the late spring of 2005 (while living in New Jersey), and taking medication for six weeks, I thought my problems were over. While my blood was being tested several days ago, for a completely unrelated problem, it was discovered that I either had been re-infected or else had a flare up from the original. The Western block test showed I'm heavily infected... again. Tomorrow I'm scheduled for an MRI and soon will have a lumbar puncture to test for the spread into brain and spinal areas.
I've noticed a distinct weakness for the past month or so, but didn't attribute it to Lyme's. I just about got my feet back into shape and now this.
Hammock Hanger
09-04-2008, 15:17
After having a severe case of Lyme's during the late spring of 2005 (while living in New Jersey), and taking medication for six weeks, I thought my problems were over. While my blood was being tested several days ago, for a completely unrelated problem, it was discovered that I either had been re-infected or else had a flare up from the original. The Western block test showed I'm heavily infected... again. Tomorrow I'm scheduled for an MRI and soon will have a lumbar puncture to test for the spread into brain and spinal areas.
I've noticed a distinct weakness for the past month or so, but didn't attribute it to Lyme's. I just about got my feet back into shape and now this.
I had the lumbar puncture when I was in the hospital. It turned out o be painless... and it was good to know that all was clear. With some of the problemI was having the dr thought I may have Meningitis, this showed I didn't.
Blissful
09-04-2008, 19:07
Sorry to hear that - hope it's now knocked out of you. I had a test for it a few weeks ago that came up negative.
fishinfred
09-05-2008, 11:07
I got bit in late May (I think) near Manassas Gap (had 3 ticks on me when I did my nightly tick check ) ,had to come home for a family issue and just felt wiped out for a week ,then the BULLSEYE RASHS appeared.....I thought it was ringworm at first then after about 5 days the FEVER hit . I was totally out of it ...couldn't think straight,my daughter said I was slurring my speech ....she ended up taking me to emergency and they did all the tests and started me on the anti-biotics (28 days worth) ,my rashes disapeared within a day or so but EXTREME FATIGUE ,and confusion continued.Then I got sicker as soon as I finished the anti biotics for about a week .Went back to the Dr and she said I could be feeling this way for months ....well its been like 3 months + and I think I am finally getting better (more good days than bad) I'm even packing up to head up to Maine next week and will hopefully get a months worth of hiking in before the Gathering in Oct. - hopefully......
IT DOES SUCK BIGTIME SO DEET UP OUT THERE !
If you or anyone you know thinks you may have it or want to learn more about it there are some good posts here on WB on the subject of LYME DISEASE
with photos of the rashes ,treatment etc. Great info that after reading I was about 99% sure what I had was LYME ,thanks to the folks who posted all the info !
See ya out there!
PEACE
Wow......so my 21 days on antibiotics isn't gonna clean it up huh? Ugh. Not I know why I've been draggin more than usual.
Appalachian Tater
09-05-2008, 15:30
Learn the symptoms using reliable sources. More than half the posts I have seen on this website regarding Lyme contain errors. It's a serious disease and you can't afford to be misinformed.
Thanks Tater....I am going to make a follow-up appointment and have a long sit-down with the doc.
I appreciate everyones input and sharing experiences. Better cautious than care-free sometimes I guess.
Appalachian Tater
09-05-2008, 15:50
Thanks Tater....I am going to make a follow-up appointment and have a long sit-down with the doc.
I appreciate everyones input and sharing experiences. Better cautious than care-free sometimes I guess.
There are plenty of physicians who are not fully informed about Lyme, either, especially in areas where it is not frequently found. Inform yourself before you talk to your physician again and write down any questions you have or anything you don't completely understand. You could read all of the links from this page: http://www.cdc.gov/ncidod/dvbid/Lyme/
cowboy nichols
09-05-2008, 16:58
My Dr, precribed This after a series of antibotics. Samento a herbal supplement I get it online, nutramedix.com I still can't skip taking it but it is worth it to not have the pain.
Hi folks,
I am currently struggling with late-stage chronic lyme. It really came on after getting bit on the AT near Kent, CT in July 2007. But looking back, I believe I was originally infected during my 2005 thru-hike. What's scary is that at that time I had zero symptoms - NONE. Finished the AT in Aug 05. Then I was having odd issues around Jan 06, then June 06, including lyme-like fatigue and pain, and what I originally thought was shingles - hurt like hell.
Within a month of getting the bulls eye rash in 2007, even though I was on doxycycline, I deteriorated VERY rapidly, so that by early September I couldn't work, walk, talk much, or think at all. Then, I was referred to an infectious disease specialist (not a lyme-literate doc). He put me on 4 weeks IV antibiotics, which gave me NO improvement. But he swore that all the lyme was completely dead, and that I just needed to wait 3 to 18 months ( ! ) before seeing improvement. But no further treatment was prescribed.
Well, finally, after waiting months with no improvement, I went to a lyme specialist in July 08, and am now on a long-term antibiotic regimen, probably for 6-12 months. Unfortunately, waiting didn't help my prospects, as it's now harder to cure. I'm still disabled, can't work, and suffer all kinds of neurological and physical symptoms, but I should slowly begin to see improvement now.
Check out the book "Healing Lyme". It's very well respected, and has several good herbal protocols to follow - one for if you just got infected, one for if you haven't got lyme, but are at risk because of where you live, or because .... you hike. All of it's just to complement proper antibiotic treatment. So, if you think you have lyme, run to a lyme-literate doc (http://www.lymenet.org can refer), and read Healing Lyme. Treat very aggressively.
Additionally, you may want to read my blog, which details my experiences, including some things I wish I had known, and had to learn the hard way. http://lymechronicles.blogspot.com
Regards,
-moosie
I've just about recovered from my third bout with Lyme's in the past 3 1/2 years. The first time: no rash, but quickly diagnosed with a blood test, Doxy for six weeks... and it kicked my a$$. The second time I was bulls-eyed all over my upper body, not just where the bite was. Obviously quickly diagnosed and Doxy for 6 weeks... not so severe this time. Recently was found while my blood was being tested for another problem. I was so weak that I could barely walk. Second test determined that Doxy would probably cure it, again. I've been on it for 7 weeks now and am almost back normal. During the most recent outbreak I've been seriously bitten several times to the point of having to dig one tick out from well below my skin. That may be why it's taking so long this time.
I live a couple of miles west of the AT/LT on the NY/VT/MA tri-border and am in/on woods or trails every day with my dog. It's a constant search for ticks on both of us.
rambunny
10-22-2008, 09:39
Yes, i have it too. It was 21/2 months before i was diagnosed so now i have what they call chronic lyme disease,arthritic,lack of energy catch every bug that comes down the pike. But i consider myself lucky. Any one meet Furtrapper? There's a man who's suffered. Something along the preventative line-cat flea and tick collars from the dollar store around your ankles.People using tarps without ground cloths sometimes get it and don't know because the tick is in the hair. Like they said-don't let it keep you out of the woods. The test is 50% false positive.If you have symptoms get treated. And some people don't get a bullseye.
Jan LiteShoe
10-23-2008, 13:45
Hi folks,
I am currently struggling with late-stage chronic lyme.... So, if you think you have lyme, run to a lyme-literate doc (http://www.lymenet.org can refer), and read Healing Lyme. Treat very aggressively.
Additionally, you may want to read my blog, which details my experiences, including some things I wish I had known, and had to learn the hard way. http://lymechronicles.blogspot.com
Regards,
-moosie
Hi Moosie,
It's good to see you here!
I have ticks all over my garden, and pick them off every spring. Went through a course of doxy this June for fatigue. I don't know if that was it or not, still have intermittent fatigue. They did find a node on my thryoid and removed half the gland - thyroid problems can mimic Lymes somewhat - but only six weeks out, I'm not so sure that wasn't a red herring.
Will check out your blog - just wanted to say hi.
Jan
PS I've used rhodiola myself, to good effect. Not as a substitute for medical, but for the energy aspect:
"Sixteen years ago, Patricia L. Gerbarg, a Kingston, N.Y., psychiatrist, contracted Lyme disease. But as sometimes happens, her blood tests were negative, so the condition was not diagnosed for five years. By that time, she had severe chronic fatigue, painful joints, muscle weakness, balance problems, memory loss and impaired mental function. After her diagnosis, Gerbarg took antibiotics for nine months. “They helped, but I still felt weak, low in energy and mentally fuzzy.
Then her husband, Richard Brown, a psychopharmacologist at Columbia University, learned of a Russian herb, Rhodiola rosea, which purportedly strengthened the whole body. He thought it might help — and it did. “Within 10 days,” Gerbarg recalls, “I felt better. After three months, my energy, memory and mental function were restored.”
Rhodiola and several other herbs are called “adaptogens.” The term was coined in 1947 ...
http://www.motherearthnews.com/Natural-Health/2008-06-01/Adaptogens-Best-Herbal-Tonics.aspx
Hi there Liteshoe!
Yeah, I did look at rhodolia based on your earlier advice to my wife (thank you). At the time my holistic doc thought I should hold off. Now I'm beginning to employ a similar strategy using Siberian Ginseng (eleuthero), which is also an adaptogen. This is recommended in Healing Lyme. I'm combining it with a few other herbs (andrographis, cat's claw, sarsaparilla, and Japanse knotweed) as part of an overall adjunct to my ongoing antibiotic therapy. Haven't started the herbs yet - just ordered them.
Good to hear from you, hope you don't have lyme.
-moosie
Jan LiteShoe
10-23-2008, 14:41
Me too! I'm reading your blog now.
Holy crap! I knew you were sick, but I didn't know about the accompanying brain fog. I'm so sorry you are going through this.
I'm glad your head has cleared enough to record all this. It is a valuable record. I can't stop reading it either - you write well.
I bought some eleuthero too, but haven't used it yet. I've used Kan Jang (andographis) for years for flu and viral-type conditions - it's the only thing I know that makes fever blisters go away, or actually helps a cold. I'd noticed it seemed to help my fatigue and a weird "hollowed out" feeling in the chest area. It strengthens my immune system, I've noticed.
Swansons Vitamins seems to have the best prices on these.
http://www.swansonvitamins.com/SW766/ItemDetail?n=4294967189
They don't carry andographis though. I grew some in my garden this year, after tracking down seeds on the internet. That's how much the stuff impresses me.