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Thread: Lyme Disease

  1. #101
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    ^ yeah, not sure about that either.
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  2. #102
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    Quote Originally Posted by Gepeto View Post
    Live in a community were something like 1 in 25 children contract lyme. Maternal twins across the way... at 9yrs one contracts lyme. Completely different girls today. Substantial difference in growth and appearance.

    Biggest fight on your hands will be what lasting effects you develop and the fight with your insurance company. Doctors are being hamstrung in their approach to fighting lyme. We have doctors leaving medical groups here because bureaucracy is hamstringing them from prescribing medications not classified to dispense to lyme patients.

    I"m not up on the subject enough, but there is strong advocacy in Washington to help at the bullshit level.

    http://www.lymediseaseassociation.org/

    It changes peoples lives around here pretty regularly, some are flat out losing their fight with lyme. Everyone has become an expert in identification. Lyme is part of the health curriculum at the elementary and middle school levels.

    I didn't do the epic read and I didn't read back this thread, but it is not to be taken lightly.

    There are some seriously debilitating effects, some are or seem to be permanent as a result of lyme.
    This. And there are many other diseases that can be caused by Lyme as well, so don't ignore the co-infections such as the three B's which will need to be treated as well. When I initially was diagnosed with encephalitis, I was also given several tests for Lyme- the Western Blot and ELISA. Both came back negative but I had a different doc test again, and I paid for it out of pocket, because with older cases of Lyme, you can show a false negative more than once.

    But the CDC doesn't recognize chronic lyme (old infection), so insurance doesn't cover it as there is no approved way to treat it. Or, they treat it as CFS or FM.

    To the person who said Lyme and anti-vaxx overlap, you are maybe confused. Lyme patients- the last thing they want is to be around folks who have not vaccinated. Also, there is such a thing as a LLD (Lyme Literate Doctor). You may mock it, but they have helped thousands of people regain some normalcy back into their lives.

    One of my nurses, when I was going through infusion treatment, asked me about Lyme initially (because in rare cases it can cause enceph), confirmed she has seen many many cases of Lyme here in our state, but still 'they', whoever the fuck 'they' are, still say there are no documented cases. It's cray cray the reasoning behind this. She agreed.

    Listen to your body and filter the good info from the bad, there is a lot out there for sure. Shit, I know more about encephalitits here in the US than my own doctor at this point, it's a fucking joke. I respect she went to school, has the papers, etc, but when it comes down to it, I know when something is wrong (like finding out I had kidney disease just yesterday from a blood test I requested, not my doc- it's from the prednisone I am on, long story but don't take that shit regardless). Undoubtedly, your doc fucked up. I mean, you HAD the bullseye and she wasn't happy with the size? Wow. They just don't know everything at the end of the day.

    There are so many unknowns with this illness, and still so much to be learned. Best wishes to your recovery. It seems to me that early treatment is your best bet for greatest recovery. Good luck.

  3. #103
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    Chronic Lyme, as in untreated Lyme from an old and still active infection is recognized, and there is a treatment protocol that can include IV, and is covered by insurance. And it has a very high success rate in clearing the actual infection.

    Lyme that requires more than one round of adhered-to, 28-day antibiotic treatment is also recognized, but not all that common.

    Chronic Lyme, as in Lyme that reappears after successful treatment of the actual infection is not recognized.

    Long term (many month) infusion treatments are not recognized for treating Lyme, and can kill you.

    There is plenty of research left to be done, but good science supports this current view of the landscape.

    I require well designed, empirically driven studies... not anecdotes. Thousands of Reiki practitioners have healed all sorts of non-psychological ailments too according to adherents, but I'm not buying it because science says Reiki doesn't work. I'm open to a good study showing that Reiki does work.

    Rhinos are going extinct because of all those healers who have treated cancer, small peen, and hangover using the magic of fingernail!

  4. #104
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    Not to come off as a total partisan, let me also add:

    - Absolutely there is much research to be done. And co-infection (which isn't caused by Lyme) is one of those areas that needs work. What if we're treating the Lyme, but missing something else?

    - Absolutely it is possible to have neurological or arthritic symptoms-- caused by Lyme infection-- that persist well beyond successful treatment, even chronically, for life. It's shitty, but that happens, and it happens with many diseases, even rarely with very common infections. Anyone who says these symptoms aren't real is a dick, and wrong. But that doesn't mean one has to have active Lyme infection to have these persistent symptoms (they may be post-treatment, they may be cause by something else... they can even be cause by LLD treatments like long-term infusion antibiotics).

    - It's well documented that some antibiotics alone have anti-pain and anti-inflammatory responses, even when poorly understood what the mechanism for this is. Antibiotics can very reasonably seem to be doing one thing (treating "chronic lyme infection") when they're doing something else (covering up symptoms as a result of something else).

    - Medical research makes way for current knowledge to be found wrong. None of this is to say that we should stop researching what we don't know about Lyme, or close our minds to the possibility that we could be wrong.

    There is a reason why Lyme is called the new Great Imitator. Much like syphilis...

    NEJM: http://www.nejm.org/doi/pdf/10.1056/NEJMra072023

    CDC: http://www.cdc.gov/lyme/postlds/

    Unless of course it's all a secret conspiracy or structural inefficiency by the pharma-medical-industrial-complex to save consumers money by limiting treatment courses to 3-4 weeks (of cheap, safe, generic antibiotics) as opposed to up to 18 months of infusion (at huge financial costs to the consumer and huge risk to the patient).

  5. #105
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    I have a very good doc and he has resisted me even getting tested again, saying of the 28-day doxy routine I underwent, "It's therapeutic". On the other hand he wants me on statins, so fuck him.

  6. #106
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    Seasonal bump. Currently working in central NY. Growing up in the Catskill region, it's been ingrained in me to check for ticks. Now, I work a lot outside in vineyards and have been walking through brush, tall grass, etc all year.

    The past week or so I've had a mild stiff neck and lower back (not bad but noticeable enough to feel that something is off - slightly different than a usual stiff or sore back from physical labor). Also my ears seem kinda plugged, glands kinda sore, and mild pressure towards the back of my head. No fever, no joint pain, no rashes.

    Here's my question. I haven't seen or pulled any ticks off and I check pretty thoroughly on a regular basis. No rashes. How do you determine what might just be seasonal allergies vs. something more serious? Given that I work a lot outside and in agriculture, might it be worth just getting checked out or tested?

    About to move out west in a few months and I figure there's better awareness here in NY if I go to a doctor.

  7. #107
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    I'd say it's worthwhile to get tested while you're still in NY and as said above Lyme is the new "Great Imitator" and there's just an abundance of possible symptoms, but the plugged ears, general soreness and head pressure, along with the time of year, would make me think more along the lines of allergy or perhaps sinus infection. I have seasonal allergies (not bad so far this year for whatever reason) and have a history of multiple multiple sinus infections and I also had Lyme.

    I had a sinus infection recently and had no idea I had it, I thought I must have strep as I was feeling super beat down and sore all over and had a wicked sore throat and swollen lymph nodes. Didn't feel any sinus pressure at all but my one ear was all plugged up. But the Doc called out a sinus infection and antibiotics fixed me right up.

    But getting a Lyme test isn't a waste of time. Just remember that only positive Lyme tests are really accurate, negative tests are often wrong. The organism hides.

  8. #108
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    Quote Originally Posted by Groomer Gambler View Post
    Seasonal bump. Currently working in central NY. Growing up in the Catskill region, it's been ingrained in me to check for ticks. Now, I work a lot outside in vineyards and have been walking through brush, tall grass, etc all year.

    The past week or so I've had a mild stiff neck and lower back (not bad but noticeable enough to feel that something is off - slightly different than a usual stiff or sore back from physical labor). Also my ears seem kinda plugged, glands kinda sore, and mild pressure towards the back of my head. No fever, no joint pain, no rashes.

    Here's my question. I haven't seen or pulled any ticks off and I check pretty thoroughly on a regular basis. No rashes. How do you determine what might just be seasonal allergies vs. something more serious? Given that I work a lot outside and in agriculture, might it be worth just getting checked out or tested?

    About to move out west in a few months and I figure there's better awareness here in NY if I go to a doctor.
    I don't fuck around with lyme. I've tested positive twice. I had to request more antibiotic after the 10 day supply ran out. Another 7 days did it for me.

    IMO, it's not the worst thing in the world to get tested and jump right on anibiotics. If it's negative, stop taking meds. if positive then you are ahead of the curve, sooner the better. It might not even be lyme but some other tick born shit.

    Of 5 different docs that I have seen for lyme, each one had their own approach and opinion on treatment etc. One guy wanted to put me on 6 month IV antibiotic which meant going to the hospital every day for an hour or so. I did not go that route.

  9. #109
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    For me, the first sign of Lyme Disease was my knee swelling up the point where it wouldn't bend. I was not aware of any tick bite, although I was living on Long Island and spending time outdoors. Message being, you may not be aware of the bite. Luckily my doc was Lyme-aware and had me tested, then set me up with 3 weeks of daily IV Rocephin after draining 100 mL of spirochetes out of my knee.

    Since then my blood work is permanently positive for Lyme regardless of treatment. I believe I was reinfected once on Long Island and once again in California at Mt. Diablo, both times getting center-clearing rashes and having difficulty getting treatment. Head of infectious diseases at UCSF refused me treatment, after which I found a Lyme aware doctor through a patient network; he tested me for associated diseases and I was positive for Babesia and Bartonella. After extended treatment with an array of antibiotics I'm back to normal although with chronic joint stiffness and occasional neck and back pain and more careful about checking for ticks, which do carry Lyme in California at least.

    To anyone experiencing stiffness and/or general malaise living in tick country I would recommend getting tested for Lyme and associated diseases; ten years ago one had to be aggressive about getting doctors to treat Lyme; I'm not sure if that's changed since then or not.

  10. #110
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    Lyme Disease

    Just tested positive for Lyme on my preliminary test results. Doctor prescribed Doxycycline antibiotic on the spot.

    Unlike the first time this happened, almost 20 years ago, I found the tick and sought treatment fast. Fingers crossed that I recover a lot more quickly than I did then.
    Last edited by Self Jupiter; 06-14-2019 at 06:47 PM.

  11. #111
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    Well that fucking sucks.

    Best of luck. I assume the treatment (or at least the awareness) has come a long way in 20 years.

  12. #112
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    Ticks are real bad this year in my neck of the woods (Mass north shore)

  13. #113
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    Quote Originally Posted by Self Jupiter View Post
    Just tested positive for Lyme. Unlike the first time this happened, almost 20 years ago, I found the tick and got treatment fast. Fingers crossed that I recover a lot more quickly than I did then.
    Any indication/reason you got tested immediately?

    I had it 2 years back (probably posted in this) but never knew I was bit. Sunday I was itching my leg and had one in my shin. Pretty sure it came in on the dog and migrated to me as I don't see it on my nightly check. No red ring yet...
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  14. #114
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    Just got a voicemail an hour ago from my vet that one of the dogs has Lyme, again. This is her third time. Meanwhile none of the other dogs have ever had it. Odd.

  15. #115
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    Quote Originally Posted by The Tortoise View Post
    Well that fucking sucks.

    Best of luck. I assume the treatment (or at least the awareness) has come a long way in 20 years.
    Thanks. Iím hopeful that early detection, along with better general awareness/expertise will lead to a better experience than last time.

    Quote Originally Posted by mcb556 View Post
    Ticks are real bad this year in my neck of the woods (Mass north shore)
    They are bad. I got it on an Elizabethan Island just off Woods Hole

    Quote Originally Posted by krp8128 View Post
    Any indication/reason you got tested immediately?

    I had it 2 years back (probably posted in this) but never knew I was bit. Sunday I was itching my leg and had one in my shin. Pretty sure it came in on the dog and migrated to me as I don't see it on my nightly check. No red ring yet...
    Found the tick about 10 days ago and removed it. No rash or streaking thus far. As of the past couple days I have a fever, aches and chills etc, so I went in for bloodwork. It is odd that I have a really bad cough as well, that isnít a typical symptom. I wouldnít rule out that I tested positive for the previous infection and I have the flu. The on-call urgent care person I just spoke with did not believe that would be the case, but Iím gonna run it up the flag pole irregahdless. I absent-mindedly forgot to ask my doctor about that when I was being seen, but surely they can see my prior history with the disease. I recall them having categorized it as ĎStage 2.í

    Iím not happy that I didnít demand they give me a prophylactic antibiotic as soon as I found the tick.

  16. #116
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    ^^^I chased the dog through the woods memorial day weekend, came in and pulled at least 6 off my clothes. Didn't find any but have felt a bit shitty this week, so it's been on my mind.

    My understanding is one you have it, it is likely you will always test positive. I thought about going in for antibiotics, but it seems like more long term risk then reward.

    Read an interesting article about Lyme masking/mimicin as depression. I'll have to see if I can find it.

    Edit: saved the little fucker in a bag, just read on the mayo clinic site I should have froze him for testing if I developed symptoms.

  17. #117
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    Quote Originally Posted by iceman View Post
    Just got a voicemail an hour ago from my vet that one of the dogs has Lyme, again. This is her third time. Meanwhile none of the other dogs have ever had it. Odd.
    Iíve been thinking of getting our hound tested, due to a bit of back end stiffness, and a general lack of energy, which is atypical of her parent breeds. She has had several ticks latch on over the past couple years, for up to a couple days before discovery. What was your houndís symptoms to indicate testing was advisable, and what is the treatment and associated side effects? Just antibiotic regime with the usual digestion issues?

  18. #118
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    Quote Originally Posted by krp8128 View Post
    My understanding is one you have it, it is likely you will always test positive.
    That's very much at odds with what I've understood, which is that you can have it and test negative, as it goes dormant.

    One of us is probably more correct than the other but I'm not sure which.

  19. #119
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    Lyme Disease

    Quote Originally Posted by iceman View Post
    That's very much at odds with what I've understood, which is that you can have it and test negative, as it goes dormant.

    One of us is probably more correct than the other but I'm not sure which.
    It depends on the type of test. I'm not sure about human testing, but the typical dog test is an antibody test, so once they have become infected it will often always test positive (unless the antibody count is really low). There is a quantitative test on the market for dogs that can give you a better idea if they have an active infection.

    Edit to add: it appears that most tests in humans are also antibody (ELISA) based so the above info would apply.

    Also, the reason you could be infected but get a negative result early after onset of symptoms is that your body hasn't produced enough lyme-specific antibodies yet.

  20. #120
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    If you test IgM positive, it is considered new infection. If you are IgG positive, then it could be new or old infection. Not all Lyme infections give a good IgM, esp.w/o erythema migrans rash. But most all comfirmed lyme will be IgG pos after 30 days.
    Move upside and let the man go through...

  21. #121
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    Quote Originally Posted by BCMtnHound View Post
    I’ve been thinking of getting our hound tested, due to a bit of back end stiffness, and a general lack of energy, which is atypical of her parent breeds. She has had several ticks latch on over the past couple years, for up to a couple days before discovery. What was your hound’s symptoms to indicate testing was advisable, and what is the treatment and associated side effects? Just antibiotic regime with the usual digestion issues?
    Well when she had it the first time it was pretty obvious something was wrong and they tested for it and found it. Since then they test her for it when she goes in for other stuff. I didn't notice any symptoms this time. The first time she was suddenly acting very arthritic, walking and stairs obviously hurt. And she was sleeping all the time, and wasn't very hungry (totally unlike her, she's food-centered for sure).

    In the past they gave her erythromycin and there weren't any really notable side effects. She might have had diarrhea but we ever see them shit, they go out in the woods.. This time we're being given doxycycline but she hasn't started it yet so I guess we'll see.

  22. #122
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    Lyme Disease

    I forgot to clarify that my Ďpreliminary testí showed positive for Lyme but the blot test has not been finished yet. I assume preliminary = ELISA.
    Last edited by Self Jupiter; 06-14-2019 at 08:59 PM.

  23. #123
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    Quote Originally Posted by Self Jupiter View Post
    Shoot, I forgot to clarify that my Ďpreliminary testí showed positive for Lyme but the blot test has not been finished yet. I assume preliminary = ELISA.
    I think you are correct. And doxycycline knocked it out for my dog FWIW. No sign of return almost 2 yrs later.

  24. #124
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    Ice, you get the dogs vaccinated?

    I got the dog after in went through it, so I had him vaccinated right off the bat. Not sure of the effectiveness, but for a few dollars if it lessens the odds I'm all for it.

  25. #125
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    Yeah the other ones have been vaccinated, but I can't remember if the one who currently has Lyme was or not - do they vaccinate if the dog has it or has had it? Not sure. If they do then she has, our vet is good and he's thorough. She went in for shots and a checkup on Wednesday and today I got the message she has it again. It's a numerical result, the counts went way up, so I guess that's the ELISA test?

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