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  1. #1
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    Tick bite.....LYME disease!

    Hey all, mid June I started feeling weirdddddd.....stiff neck, jaw hurt to open, headaches, joint pain, spike in fever, rash, and many many more symptoms...finally back in july I was diagnosed with Lyme. I've taken a cycle of doxy and I've felt great since! That's just a short version of the course of symptoms I had....wondering if anyone else has gone through what I did....I mountain bike in central IL.

  2. #2
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    You're lucky it was diagnosed quickly. Lyme can turn into a permanent debilitating disease. My sister-in-law has chronic Lyme and she's been rendered disabled and will probably have problems for the rest of her life.

    It's a horrible disease.

  3. #3
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    If you're feeling good post Doxy, that's good. Go with it. They really don't know why some people don't get better after Lyme infection. I've had Lyme's 2x and I've also had 2 vaccines(One, and a booster)which were pulled off the market. One of my Lyme's cases occurred post vaccine. Luckily I produced bulls eye rashes each time and was diagnosed quickly.

  4. #4
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    I've had Lyme and treated it quickly with Doxy. Luckily my symptoms have not returned. I have friends that weren't so lucky and are dealing with the long term Lyme which can be very debilitating.

    There are some newer treatments for long term Lyme that you might not have heard of. One, which sounds the most promising, is the inter-muscular injections of antibiotics. This allows patients to get the meds for longer than their GI tract can handle the oral antibiotics.

    An old gf's brother had long term Lyme and couldn't really function productively for 10 years. He got these treatments and now works full time and earns a good salary. He was treated at the Hudson Valley Healing Arts Center. That was a few years ago and now I know someone that is getting these treatments in New Jersey.

    If you know someone with long term Lyme pass this info on to them! From what I've seen mountain bikers have a pretty good awareness of this disease.

  5. #5
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    Yes, it is a very serious disease and I've lost years of my life to it. I contracted it all the way back in the 80's but it went undiagnosed for probably over 10 years according to my Dr who found it in a spinal tap. My ex gf also once had it but hers was caught quickly and she's fine today. Anyone that things they may have it by all means see a Lyme Literate MD and get treatment, sometimes fooling around trying to find out what's wrong with you can waste precious time and turn something that could be cured with a few weeks of orals into a lifelong struggle.

  6. #6
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    I've had Lyme twice. The last time (April), I took a couple weeks of antibiotics and got better but all of a sudden a month ago I started having heart palipitations and more joint pain. Now I have stage 2 disseminated Lyme. I'm frightened, to say the least. Has anyone else had it this bad and what type of treatment did you get?

    Thanks,

    G MAN
    "There's two shuttles, one to the top and one to the hospital" I LOVE this place!!!

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    I had and still have some of those symptoms. For myself I had lyme quite bad and the only thing that helped me was an IV course of antibiotics. Once lyme gets to a certain point past the blood and into tissues oral antibiotics may not be enough. I'm by no means a professional but the IV Rocephin helped me get back to having a life again, without it I don't now where I'd be today. Seeing a LLMD is important in my opinion, I live in NJ and the Dr. I saw was Amelia Eiras from Jackson.

  8. #8
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    Caution;  Merge;  Workers Ahead!

    Quote Originally Posted by Gman086 View Post
    I've had Lyme twice. The last time (April), I took a couple weeks of antibiotics and got better but all of a sudden a month ago I started having heart palipitations and more joint pain. Now I have stage 2 disseminated Lyme. I'm frightened, to say the least. Has anyone else had it this bad and what type of treatment did you get?

    Thanks,

    G MAN

    The only treatment as of now is some serious dosages of antibiotics. The problem is finding a doctor that will do it. Since the media started raising alarms about the overuse of antibiotics- which is a good idea in most cases- most insurance companies won't pay for more than a couple of weeks of treatment. Unfortunately, some diseases like Lyme get caught in the rush for corporate profits. They lump all stages of Lyme like it's early onset. Unfortunately, no two cases are the same. But try telling that to the pencil pushers. Great country, huh?

    There are a few doctors that will still treat it properly, so finding one is essential. Good luck.

  9. #9
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    Well my doctor is one of my best friends so no problem there. He's prescribing me 4 weeks of doxy which he says "should" clear up stage 2 Lyme. I'll post updates as to how it goes. Thanks for the well wishes!

    Cheers,

    G MAN
    "There's two shuttles, one to the top and one to the hospital" I LOVE this place!!!

  10. #10
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    Quote Originally Posted by ti-triodes View Post
    The only treatment as of now is some serious dosages of antibiotics. The problem is finding a doctor that will do it. Since the media started raising alarms about the overuse of antibiotics- which is a good idea in most cases- most insurance companies won't pay for more than a couple of weeks of treatment. Unfortunately, some diseases like Lyme get caught in the rush for corporate profits. They lump all stages of Lyme like it's early onset. Unfortunately, no two cases are the same. But try telling that to the pencil pushers. Great country, huh?

    There are a few doctors that will still treat it properly, so finding one is essential. Good luck.
    I couldn't agree more with this, I went through the same situation and in the end wound up paying for much of my treatment "out of network" because the doctors under my HMO weren't giving the antibiotic treatments I needed. For my initial treatment I spent some time on lyme message boards talking to people that had lyme and learning their experiences with several doctors that were known to give more treatment than the usual insurance driven employees of our healthcare system.

  11. #11
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    Just be careful with sunlight when you're on doxy, I got a really bad sunburn on my hands while taking it, it was the only part of my body I couldn't cover while working outside. Even strong spf didn't seem to be enough. If you have lyme it's also a good idea to make sure you don't have any coinfections like babesia or elrichosis, I have all 3 myself and different antibiotics seemed to help with them. Great that you have a Dr/friend.

  12. #12
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    My lyme story. No lingering effects at this point.

    Just got though the first 3 days of Lyme disease...

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    I got a tick bite then the cellulitis bullseye rash after trying to forge through a rarely used overgrown trail last June. If you're lucky you get the rash. Took the doxycycline and had no problems. It's nothing to scoff at though. I'm a cardiac RN and people have needed heart transplants and even died from Lyme induced cardiomyopathy not to mention having permanent joint or nervous system damage. If you have a tick that's been imbedded form more than 12 hours you should go see your doctor. I think they typically won't treat you unless it's been imbedded for more than 24 hours but those guidelines change depending on the virility of the organism.

  14. #14
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    I'm a month into treatment (Doxy) and slowly getting better. Have stage 3 - neuro symptoms of tingling in arm/leg, fatigue, feel like I have a constant sinus infection, ear ringing, eye issues, anxiety. I probably got it last June (no rash), as that's when my XC racing season started going downhill (ha) and I had lingering neck and fatigue issues all autumn. Not diagnosed until Dec 19, and my tests were inconclusive. But I live on Cape Cod, deer tick central, so my doc was treating me before he even saw the test results.

    Things that help:
    Grapefruit Seed Extract helps with the sinus thing. 4/5 drops in a cup of water.
    Methyl B12 (2500mcg pills from GNC) seems to help with the neuro issues and gives me a little energy boost.
    Rest, rest and more rest. Good long sleeps.

    Things that hurt:
    Alcohol. Even a couple tasty beers sets me back.
    Exercise or any exertion. Sends me reeling.

    I'm really bummed about not riding, but I'm trying to think of it as an injury that I need to get over, which is hard, as my symptoms are mostly in my head and come and go so much.

    Lyme is different for everyone, but anyone had a similar experience to mine? How long did it take you to get back to riding?
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  15. #15
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    Quote Originally Posted by longshanks View Post
    I'm a month into treatment (Doxy) and slowly getting better. Have stage 3 - neuro symptoms of tingling in arm/leg, fatigue, feel like I have a constant sinus infection, ear ringing, eye issues, anxiety. I probably got it last June (no rash), as that's when my XC racing season started going downhill (ha) and I had lingering neck and fatigue issues all autumn. Not diagnosed until Dec 19, and my tests were inconclusive. But I live on Cape Cod, deer tick central, so my doc was treating me before he even saw the test results.

    Things that help:
    Grapefruit Seed Extract helps with the sinus thing. 4/5 drops in a cup of water.
    Methyl B12 (2500mcg pills from GNC) seems to help with the neuro issues and gives me a little energy boost.
    Rest, rest and more rest. Good long sleeps.

    Things that hurt:
    Alcohol. Even a couple tasty beers sets me back.
    Exercise or any exertion. Sends me reeling.

    I'm really bummed about not riding, but I'm trying to think of it as an injury that I need to get over, which is hard, as my symptoms are mostly in my head and come and go so much.

    Lyme is different for everyone, but anyone had a similar experience to mine? How long did it take you to get back to riding?
    Longshanks I was diagnosed about 2.5 years ago.. I had been sick for at least 6 years.. I was constantly being treated for "sinus infections" and I think this is what delayed me getting really bad. I had terrible headaches all day long. I finally broke out in red patches all over and then developed Bells Palsy. This was a result of the infection and swelling in my brain. I was hospitalized and received iv antibiotics for 3 weeks. Felt much better. Two months later sick as ever. I have been on and off antibiotics ever since. I have made a great deal of progress and started riding my bike again this past summer. For me aerobic exercise has made a big difference. If you want to talk feel free to message me..
    When you've seen someone rupture their scrotum on a bike you won't take the standards for top tube clearance lightly!

  16. #16
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    Thanks RossJamis. I exercised for maybe 20 minutes yesterday and am having an awful day today. Ugh.
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  17. #17
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    Quote Originally Posted by longshanks View Post
    Thanks RossJamis. I exercised for maybe 20 minutes yesterday and am having an awful day today. Ugh.
    One of the difficult parts of this disease is dealing with all the toxins the die off produces. Many people will recommend various forms of detox. Drinking straight lemon juice, taking epsom salt baths etc.. I have found the best way for me to detox is to sweat profusely. At first I did this buy taking sauna baths.. Very hot baths, very hot room. When I first started this I would actually shiver from cold even though I was in very hot water. My average temp was 96. I was wearing ski clothes to bed and still freezing. After a short time of doing this my temp returned to normal. Now I am back to Mt Biking which I haven't really been able to do for years. I still have bad periods but I am so much better. Another important part of recovery is diet if you haven't already found out.
    When you've seen someone rupture their scrotum on a bike you won't take the standards for top tube clearance lightly!

  18. #18
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    I've seen saunas and hot baths come up quite a bit in my recovery research. Going to try that out. Thanks!
    Yes, I am eating very well right now and have lost a few lbs. I was doing lots of core work before I got sick and so with the fat-shedding, I actually look super fit even though I feel like dog, lol.
    Thanks again.
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  19. #19
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    there is a lot of misinformation about lyme disease out there

    plus

    there are still some unresolved questions dealing with long term effects
    ----------
    I have a story about it. 1.5 years long and 2 years ago since it was cured.

    7 months undiagnosed, about a year trying to cure it

    and I was -lucky- taken care of by someone who is on the board of the centers of disease control, and specifically a worldwide expert in lyme. I studied lyme a ton while I was affected by it and had access to this top doctor, so the stuff I say is mostly solid. your mileage may vary


    first of all check for ticks all the time

    rashes only happen in about 60% the occurrences, so lack of rash is no guarantee

    I saw the rash, it was a small red stripe, not a bullseye. I had poison ivy at the same time so I ignored it all, and the poison ivy cleared up in two weeks, the lyme rash in one month, so I blew it off as poison ivy. big mistake. the rash was behind my knee.

    fact: doxycycline can take care of lyme 100%. so can ceftriaxone. after that, other antibiotics can take care of it but have weaker effects, so you may need to be on them long term...like years if you are allergic to all the others and they scrape the bottom barrel for one you can tolerate

    myth: lyme can hide in the body or brain and antibiotics won't help..

    no it cannot hide. antibiotics like doxycycline and ceftriaxone can and will cross the blood brain barrier and kill off lyme. eventually. that is part of the reason you take doxy for 6 solid weeks. if you are on a less preferable antibiotic due to allergy to doxy or ceftriaxone, well then therein lies a problem...in these case then yes you may be in for a really long treatment program.

    the gold standard is ceftriaxone, but it has to go into your heart via PICC so it never the first option. doxycycline is the first option. if doxy doesn't work in 6 weeks, you get a PICC line installed 'if you can afford it' or are insured. insertion is 3 grand and then there is the cost of a nurse coming to your home every 5 days to check on the line whilst you pump huge syringes of ceftriaxone into your heart every day on your own. not fun

    lyme vs doxy: 1st week of bite, 1 single day 2x200 morning and 2x200 evening will nuke it. 1st month of bite, 2 weeks of doxy takes care of it
    after that, 6 weeks of doxy will nuke it. if the doxy works.

    problems:

    you have to be able to tolerate the antibiotic. some people only have the option to take a weaker antibiotic and there we have an issue whether it can kill the lyme, so hope you can tolerate doxy or ceftriaxone

    doxy itself is amazingly good, but you might need to deal with nausea for 6 weeks straight. if you take food with doxy it can reduce it's effectiveness which is what happened to me the first round. I was not on a restriction and it killed my stomach so I ate sunflower seeds a lot and what do you know ? sunflower seeds have magnesium and magnesium renders doxy worthless. so...you gotta basically take doxy on empty stomach, hence, nausea.
    ---------------------------------------------------------------------------------
    OK enough. cliff notes here.

    gotta tick bite same time as poison ivy. I missed out on early detection.

    7 months later my knee ached at night. no biggie I musta tweaked it.

    3 weeks after that, my knee swelled up pain off the charts I am in a wheelchair and in the ER.

    1 huge needle, knee tapped, clear fluid, no lyme test. feelsgoodman
    2 days later back in ER, second knee tap. and a third in 2 days. total of 5 knee taps
    in 10 days. awful big needle going right deep in your knee joint.

    So Finally they test the knee juice. Lyme, and based on the specific variation of antibodies in my blood, they said 'must be 6 months old' and I thought back and said YUP that was what that poison ivy rash must have been 7 months ago.

    get set up with an appointment to see -the world expert- in lyme (just damn lucky is all I can say, he is local to me) and he says straight faced to me: we are gonna take care of this but it may not be easy. you have to be diligent. I am on board because my knee was BULLS**T

    set up with 6 weeks doxy, it failed. all this time I am on crutches and percosets

    set up with PICC line, turns out I am 1 in 10,000 allergic to ceftriaxone. After 7 days suddenly a full body rash and super fevers. Almost died with 105 deg fevers and convulsions in the hospital IC. But once they stopped the ceftriaxone I came around and for the first time, I felt the numbness in my foot just shrink by 1%...enough to think hey I may somehow get lyme fixed. ceftriaxone did something.

    now, all through this I was researching lyme on my own, and figured out it was my diet that maybe screwed the doxy up those first 6 weeks....

    doctor wanted to step back, and send me though a ceftriaxone desensitization program, so I could get back on the PICC. wow really ? I'd do it but ...it wants to kill me

    I proposed, please lets try doxy one more time for 6 weeks I think my diet affected it, and he said 'worth a shot' and I will a) not eat any where near morning or night and b) double-dose at night.

    did this for 6 weeks, hella nausea, but in 2 weeks it started to turn around. after 6 weeks, lyme is cured. total time with swollen knee 10 months ~!!! and this is the hard part, knee will grow into this position since it has been so long...so a long road of physical therapy to get it back in shape

    total weeks on doxy 6 useless and 6 effective
    total weeks on ceftriaxone 1
    days in intensive care due to ceftriaxone trying to kill me 4
    total months with crutches and swollen knee and numb foot 10 !

    ---------------
    SUMMARY

    Lyme is 100% curable with antibiotics. no mystery, no voodoo, lyme cannot hide, it will take care of it...eventually

    Lyme is 100% curable -if you can tolerate the antibiotics-. If you are allergic you may be boned hard or in for a sour ride as you have to go to weaker antibiotics for long periods

    Lyme is 100% curable but early detection is key so any built up damage can be reversed. If you have a year or two of lyme before diagnosis it can do actual damage to the nerves anywhere in your body, spine, and base of brain and you may have long term after effects. Long term antibiotics have no effect on this. it is plain old damage the body will need time to repair, if it can be repaired

    Lyme does not dump toxins in the blood as it is dying and you don't get some sort of toxic effect from killing lyme, that stuff is something else if you feel those symptoms. I asked the experts this is the first thing they chuffed off as useless info. Lyme bacteria are actually fairly harmless to the body directly, they just set up like squatters and hang out and replicate and climb up to the brain...(which is why it can invade and set itself up so sneakily and you can have it for years) ---->it is the bodys Immune response to Lyme which does the damage as it tries to fight it.<---- your failed immune response does most of the long term damage. It is this immune response in my knee which blew the knee up. lyme arthritis masquerading as gout symptoms.

    Long term lyme does have one known effect as clusters of lyme bacteria grow and steal space from human cells, especially nerve cells, those areas can have physical damage (like salted earth where nothing grows) but again, doctors do not think lyme itself has any toxins. they are more like a weed sucking down nutrients and stealing

    -------------
    it's fixable

    it's sneaky

    it can be costly (PICC) so if you are uninsured you may not get the best treatment

    not as many doctors know lyme well enough to immediately get you on the correct antibiotic regimen. again, I was lucky as hell I live right near the leading expert and his team of infectious disease physicians

    I was damn lucky my knee exploded so it got looked at. If that had not happened I might have lyme for years as my symptoms would be general malaise. then I would really be screwed with the long term damage and possibly permanent damage



    and yes...there are still more unknowns about lyme than the experts wish. fact remains, it is 100% curable in all cases where you can tolerate antibiotics, the question is how much permanent damage may have been done by your own immune system before it gets cured

    F! Lyme !
    Last edited by 127.0.0.1; 02-27-2014 at 05:38 AM.

  20. #20
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    Ahh Lyme disease. I've had it twice. Once when I was 18, long story short I ended up in the hospital for 2 weeks and almost lost the use of my legs. That was f_cking scary, it took me months to recover. Then I got it again last year at the age 32. I saw the bite within days, got the antibiotics and I was better within a week.

    Scary stuff. Check for ticks!
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  21. #21
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    Update - 5 weeks of doxy cleared up my stage 2 Lyme 100% (knock on wood). Take it with crackers or bread (something benign that doesn't contain metals like calcium, magnesium, zinc) so it doesn't cause upset stomach. Super stoked to not have heart palpitations every night these days and have my life back! Thanks Dr. Bill!

    Have FUN!

    G MAN
    "There's two shuttles, one to the top and one to the hospital" I LOVE this place!!!

  22. #22
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    ^hear hear !!! I am starting my third season post lyme and I -finally- now predict I will be stronger and faster than before Lyme hit. It is possible to recover, get real mad, and come out better than before.

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