Shop Products
Houzz Logo Print
liriodendron_gw

Another thing you can get from ticks: Anaplasmosis

liriodendron
12 years ago

I live in the upper Hudson Valley (Albany-Saratoga area) and we have had to deal with high-levels of ticks and tick-borne Lyme disease for about 15 years. When we moved here more than three decades ago it was a rare event to find a tick on a dog that had been in the field for days. Heck, I used to nap in the tall grass in my fields in the summer.

That changed in the early-90s: first ticks became common and shortly afterward people started getting sick with something called Lyme disease. I suspect that a fair number of people got sick with Lyme when it was largely unknown and never got treated at all. When you have Lyme initially you may feel sort of OK; may (or occasionally may not) develop the characteristic bull's eye rash but often you just feel sick in an undifferentiated way. Left untreated Lyme can cause joint, neurological, cognitive and for some people, chronic illness. Other people seem to recover, just fine. Most people who are treated recover completely

Luckily for my family we didn't get sick with Lyme until there was enough info out there for us to recognize it and get it treated, promptly. I am out in my fields and woods all the time so my exposure to ticks is relatively high. I've been bitten so many times that I have developed a kind of allergic reaction to any tick bite that is a kind of good thing since I know pretty quickly because of the intense itching. As a kid, I lived in the tropics in some extraordinarily tick-ish places - places that make the NE US seem practically tick-free in comparison - so I attribute my hyper-sensitivity to the 100's of tick bites I've had over the years. Peculiar as it sounds, I count that as a blessing these days.

Anyway, this isn't a thread about Lyme, but about the one of the other diseases you can get from ticks: anaplasmosis. It's primarily found in the NE, and the Upper Midwest. But anywhere there are ticks of one species or another you can get tick-borne diseases that are not Lyme. In the Far West and Rocky Mountain area there are different things to catch. (When I started researching the topic after getting sick, I went to my local medical school library and there are several thick tomes devoted just to the diseases transmitted by ticks; not all insects and spiders, just ticks!)

This is what happened to me: I got a deer tick bite on March 14. No biggie, just wrangled it off with my O�Tom tick twirlers (see Bee's recent thread for info I posted about them) and kept an eye out for Lyme symptoms, which did not develop. This is totally unremarkable for me.

A bit less than two weeks later (on a Tuesday) I felt sort of off-color: tired, listless, headache-y. Just down enough that I awarded myself a rest day. On Wednesday I woke up feeling quite sick to my stomach - very nauseated, but not vomiting or w/diarrhea. But sick enough that I reviewed in my mind what I had eaten and wondered if I had come down with serious food-borne illness. By evening the nausea had abated, but I had a mild temp which increased overnight. I woke up Thursday feeling headache-y, feverish (103F), but hey it's March and I didn't have a flu shot last fall so I figured that was it. (And my DH had had a flu shot which I thought explained why he wasn't feeling sick.) So I prescribed myself more rest and fluids and just waited to get over it. By evening I was much, much sicker with a high spikey fever (104F) accompanied by severe chills and almost convulsive shakes, in alternation. I took some aspirin for the fever, with only modest effect.

Now there's something else unusual about my medical history: as a child I had a severe case of malaria. Malaria makes some permanent changes in your body's response to fever. I can easily get a slight fever from something like a sunburn. And for me, fever is usually accompanied by chills and shakes, but these are just the left-over physiological artifacts of having had malaria so I generally ignore them. I just asssumed the high fever I had was idiosyncratically "normal" to me and the flu.

I woke up in the night even sicker with a fever I couldn't keep down, even with aspirin, and by Friday AM I knew I really had to see a doc. My own primary guy wasn't available and his nurse suggested I go to the ER. It seemed silly to go to the ER for the "flu", but my high, cycling fever worried me. I am terrified of needles so this was a huge decision for me as I knew that would be the first thing they'd do. (I am such a wuss!). My DH took me to the ER and I donned a mask (against spreading the flu) and so it began. I was right, they immediately tested my blood in all the usual ways (CMP, CBC, LFT, blood cultures, plus urinalysis, chest X-ray, the whole works). They gave me IV fluids. We stayed the whole day. In the end, they told me that I didn't have a bacterial infection, (dead wrong on that as you will see), UTI, or pneumonia. So by process of elimination they decided I probably had a viral infection, most likely the flu. And what I needed was rest, fluids and Tylenol to bring down my fever, and yada, yada, yada. I felt like a complete dope having just spent a couple of thousand dollars only to be told that I had the flu and having used the resources of an ER for something that pretty much should be cared for at home. They did note a couple of things: slightly decreased white cell count (the reason they believed no bacterial infections were involved) and my liver function tests were abnormal which they attributed just to be being feverish. They didn't mention that my platelet level was cratering (was 70 on that first day, and headed steeply downward from there), but I wouldn't have recognized the significance of that clue anyway.

So we went home. I thought I was hungry but didn't feel like eating. And as soon as the Tylenol wore off the fever came back, but worse. It was now spiking to 105F and accompanied by fierce chills, sweats, and delirium. Off and on during the night the fever would break in a cataclysmic chill. About 6:30 am I woke drenched in sweat, freezing, but momentarily clear headed. The first thing I thought was: am I dead? After a moment, I figured I'd test that by sitting up and putting on my glasses and checking my temp. (You can't be the home-schooled daughter of a biologist and engineer without wondering if there's some hypothesis to test in any situation.) Obviously, I was still with this world.

In the short period of clarity I had before another cycle of fever started I thought back over all the questions they had asked me in the ER for some other explanation of what was going on. They had asked me when was the last time I had taken antibiotics (cat bite around last Labor Day), but I realized that in my fevered state I had missed a crucial variant to that question: when was the last time you might have considered taking antibiotics, but didn't. Duh! The tick bite when I had NOT taken even an anti-Lyme prophylactic dose because the little beast hadn't been on long enough.

I reached for my laptop and Googled "tick-borne diseases, not Lyme". The first thing that appeared was babeseosis, dubbed "the malaria-like new plague in the NE". Bingo! (Or at least I thought so at the time.) Having had malaria, what I now had seemed so much like it I knew I had to go back to the ER to get tested for babeseosis even if it meant more needles!

In the last few minutes before the fever came roaring back I had one last unmuddled realization that I was facing an important choice: if I didn't go back and get treated whatever I had might very well kill me. It wasn't a scary feeling, simply a clear sense that I was at a turning point and I needed to ACT.

As it happened we were just at that very moment having one of our farm outbuildings burglarized. Luckily one of our neighbors saw the burglars in the act and called us. My DH rushed out of bed, went to deal with it and the ensuing cops, etc. I used the time to get up, wash and dress, so when he walked back in I asked to be taken back to the ER immediately. Afterward, he told me that really scared him as he knows I would do almost anything to avoid an ER.

When we got back to the hosiptal, they protested, but you have the flu, etc. But my by-now 106F fever got their attention, as did my determined insistence on being tested for non-Lyme tick diseases, especially babeseosis. Still, it took five more hours for them to locate an infectious disease specialist and come around to seeing the need for more testing and admission to the hospital.

An important take-away from this whole long story is this: if you have been bitten by a tick and come up really sick, especially with bad headache, unproductive nausea, very high fever, chills, etc. that may feel like the flu on steroids, you need to think not about Lyme but about the possibility of the other tick-borne diseases. Bring the tick bite, or exposure to ticks, up. Be proactive since even in the ER my anaplasmosis was not recognized. Which was too bad because there is a constellation of abnormal results to common blood tests that along with fever and possible exposure to ticks gives a good indication to diagnose anaplasmosis.

The three common changes in lab results are: decreased white blood cells, sharply lowered platelets and abnormal liver function (3 to 4 times normal ranges). All of these were clearly visible on the first day's testing, but were misinterpreted or explained away as the result of a feverish-flu.

The infectious disease doc ordered the full range of tick-borne disease blood tests, but explained to the ER docs about the triad of lab results and recommended I start immediately on some doxy, without waiting for the results of the new tests. They were drawing the blood for the tick tests and holding a cup with 100 mg of doxy over my head. I took the doxy. The fever came down to normal within an hour and I've been recovering steadily ever since. (Took doxy for a further 8 days, as ordered.) My lab results normalized (mostly) over the next few weeks. My recovery has been slow because I went through several days of being a very, very sick puppy. But I have no doubt I will be fine in the end.

Now here's another important point: I went back to the ER because I thought from reading on the net that I had babeseosis because of its similarity to malaria, which quite unusually I was also familiar with. But I was completely wrong, I didn't have babeseosis, I had another tick-borne disease, anaplasmosis. Only afterward when I was reading about it in medical journals did I get the full picture of its symptoms. I had pounced on babeseosis' "malaria-like" symptoms and misdiagnosed myself - though at least it got me back to the ER where an infectious disease doc could sort it out. What you read on the net can often lead you in the wrong direction.

Here's the scoop on anaplasmosis: it's a bacterial disease, not a spirochete-caused disease like Lyme. You can get more than one tick-borne disease in the same bite. There are two other tick-borne bacterial diseases, erlichiosis and babeseosis in the NE and upper midwest. Until recently anaplasmosis and erlichiosis were sometimes combined or thought of as co-variants of the same disease which can be confusing. Lyme, anaplasmosis and erlichiosis are all treated with doxy. (And in the case of anaplasmosis, the therapeutic response to doxy is extraordinarily fast, often it takes just hours before symptoms start to abate.) Babeseosis is treated with a combination of two different (oral) antibiotics.

With anaplasmosis some people never develop clinical illness. Others, like me, are overwhelmed. It is more likely to affect people who are older (I'm 62), or who have weakened immune systems (chemo, transplant, immunosuppressant drugs for other diseases, etc.). It has this extremely characteristic trio of lab results: lower white blood cells, much lower platelets and abnormally high liver function values. Most people recover completely, some without ever knowing they've been infected and with no treatment. If you do get ill, you will need treatment to avoid further illness from the disease's effects, like thrombocytopenia (very low platelets) and possible liver or kidney damage. Some people wind up in the ICU, and a (very) few die.

It is not known how long a bite-exposure is needed to transmit the virus; it may be quite short (mine was probably only a two or three hours). It is believed that post-bite prophylaxis of 200 mg. of doxy, in a single dose will prevent anaplasmosis. There are no known reports of chronic anaplasmosis. And if you have a significant bout of it, your antibody titer may be high enough for some time to prevent re-catching it.

Dogs are susceptible to the same disease and are treated the same way. If your dog has had it, consider yourself at risk of getting it from the same disease reservoir in your area and the same vectors (ticks). The disease reservoir is primarily deer or white-footed mice; ticks are just the unintentional passers-on of all the tick-borne diseases. Their only interest in you is having a hot meal. Both nymph and adult deer ticks can transmit the disease. Larval ticks are not confirmed, only theoretical vectors. Deer can be infected with anaplasmosis and there are reports of deer butchers catching it without exposure to ticks. (Presumably they were exposed to infectious deer blood through small skin cuts, blood contact on their conjunctiva or through inhaled aerosolized blood from meat-cutting saws. Total ick.) The reports of the most serious illness from anaplasmosis actually come from the upper mid-west; until this past year it was mostly considered a milder, uncommon disease in the NE. I haven't left the NE in years, however.

I'm on a small personal mission to alert people to the existence of the other tick-borne diseases and to their symptoms that are so unlike the now-familiar ones of Lyme. If you live in a tick area with known Lyme, consider the other ones as well, if you should become sick. But don't get too caught up in the chronic-disease issue. The main risk now is that these diseases aren't recognized when they occur and can be easily treated. You can help by spreading the word about the symptoms and indications for anaplasmosis.

Of the two other tick-borne diseases (babeseosis and erlichiosis) in both cases you may be quite sick (list of symptoms is very similar, but NOT with the same pattern of lab results), so don't forget to volunteer any possible exposure to ticks when seeking care. It could be the critical clue that's needed to get you the right treatment.

I apologize for the length of this essay, but I wanted to make it into a little story so readers would remember my saga, if they also get sick. If I had known what I now know about these other diseases, I would have been spared the worst of it as I would have recognized it right away.

Liriodendron

Comments (18)

  • sweeby
    12 years ago
    last modified: 9 years ago

    Oh my goodness! I'm so sorry for the terrible ordeal you went through, and glad you're on the mend now. I got a kick out of your clear-headed hypothesis-testing, and can clearly recognize that child-of-brainiac parents shining through! (I'm another child of geeks.)

    Thank you for taking the time to educate us about these potentially life-threatening diseases, and remind us of the importance of being persistent with doctors when we know something's not right...

  • jterrilynn
    12 years ago
    last modified: 9 years ago

    Thank you so much for sharing all this valuable information. I live in Florida and never hear much about ticks except in relation to protecting my dogs. I'm surrounded by acres and acres of wild nature and spend a lot of times outdoors so the heads up on symptoms is greatly appreciated.
    It is good to know you are getting well!

  • allison0704
    12 years ago
    last modified: 9 years ago

    Thank you for sharing your information, and I'm so glad you were proactive getting the care you needed! I live in the south and had a lot of dog tick bites last year. I have a small chart "types of ticks" on my computer and when I find one on me I always check to see what kind of tick it was. (I so hate those tiny things!!!)

    Here's a good website with information.

    Thanks again for posting your story.

    Here is a link that might be useful: Ticks

  • antiquesilver
    12 years ago
    last modified: 9 years ago

    Good information to know. And glad you're okay.

  • hhireno
    12 years ago
    last modified: 9 years ago

    Oh my word! Thanks for sharing your story.

    On the other thread about ticks, allison linked the info on that tick remover. Watching the little video was making me feel sick.

    I won't be going outside anymore.

  • jerseygirl_1
    12 years ago
    last modified: 9 years ago

    I am so happy you caught it. A friend of ours had a similar incident after being bitten by a tick a couple of years ago while golfing.

    He did not know he was bitten. His started having the symptoms you described. Went to the ER and was diagnosed with babeseosis. After a few days in the hospital on antibiotics which he seemed to be responding to he was going to be discharged. Upon discharge a nurse noticed funny sounds coming from his spleen. He had to have his spleen removed in emergency surgery. Babeseosis attacked his spleen and turned it to mush.

    Tick bites are very tricky. If you notice that you have been bitten, please don't let it just go.

  • emagineer
    12 years ago
    last modified: 9 years ago

    Although I was searching for information not related to a tick illness, I came across a controversial document regarding such. So controversial it isn't worth reading, not sure all is true. The bottom line is few doctors know to treat the illnesses and some patients go for years without a diagnosis. Even if they have major symptoms during those years and the symptoms can be all over the place. As is the diagnosis and treatment. One thing I did read was the tests for a tick desease is only 50% accurate, depending on the lab used.

    Good for you searching out information. Plus getting the CDC involved. Sometimes I feel guilty going to my doc and suggesting looking at info found. But most docs are getting used to this and hopefully, as with you, use medical literature (although this too is not always on target)rather than forum recs. Those medical forum posts are all over the place.

  • anele_gw
    12 years ago
    last modified: 9 years ago

    Oh my goodness!!! There are so many scary parts in this story, ranging from being burglarized to being sent home from the ER once and almost again! I know you misdiagnosed yourself but if you had not come with that, you might be gone, given that you would have received no treatment. I can' t wrap my head how you were able to somehow research all of this even with that crazy fever. That moment of clarity you had saved your life.

    There is such a balance between trusting doctors (everyone is fallable!) and advocating for yourself. The way I see it, because of money and potential side effects, doctors must take calculated risks. I wish it did not have to be this way.

    Sorry for the typo below. Nook won' t let me fix it!

    Thank yiu for your story!

  • Oakley
    12 years ago
    last modified: 9 years ago

    What a fascinating read! Are you a writer by any chance, because you had me at the get-go!

    I am so grateful you wrote this. Although I'm not in the East, I am in a state that gets Lyme D. but it's not that common. In fact, whenever there's a case of it here it's always on the local news. lol. But it is becoming more common.

    Tina, thanks for the chart of ticks. Ticks are out in full right now. We've pulled two off Grace the past two days. The thing is, we put Frontline on her (her monthly dose) on Thursday, and she had another one stuck to her yesterday. Shouldn't it have killed the tick when it bit into her?

    And silly me pulls it out with my fingers, but I did wash my hands, so I don't know if that helps or not.

    I used to mark on the calendar when I got a tick bite, then got lazy about it. Now I'll start doing it again!

    Timely topic!

  • luckygal
    12 years ago
    last modified: 9 years ago

    I am grateful you originally posted this on the main home decor forum, otherwise I wouldn't probably have seen it as I don't come to conversations very often. Fortunately you had previous experience so you knew enough to diagnose yourself, even if incorrectly, and get treatment.

    I think about ticks every time I take my dog out as I live in the woods with lots of deer around. I've not, to my knowledge had a tick bite, but did find one on my dog once and on a previous dog when we lived further south.

    Here in western Canada Lyme disease has only recently been recognized as "an emerging tick-borne disease". IMO authorities have been slow to recognize it as it was long known in the western states and it's odd that it would stop at the 49th parallel. Those with clear symptoms of the disease have sometimes had to fight for testing and treatment and I'm sure there are many who have gone undiagnosed.

    Fortunately I live in the north where ticks are apparently not as frequently infected with any of the tick-borne diseases but it's still a possibility. There are advantages to living with cold winters altho with global warming the risks will be increasing.

  • alisande
    11 years ago
    last modified: 9 years ago

    Interesting to read about your experience, L. Thanks for sharing. I've been doing what research I can this spring without getting overly involved with the Lyme groups online.

    I've had fibromyalgia (FMS) for decades, so I'm no stranger to body aches and chronic fatigue. The Lyme people tell me I've had Lyme all along, but who knows? I've been tested for it many times, not that the standard test is at all conclusive. I've blamed the FMS on the excessive radiation I had in childhood. But whatever I have now goes beyond FMS, and I'm certain it's tick-related.

    When I was working as a reporter last summer I did a story on Babesiosis in our donated blood supply. It's a serious concern, and an indication of how widespread the problem is. I've been thinking my current condition might be Babesiosis because twice (in 2010 and 2011) I was bitten by ticks and came down with a high fever, chills, profuse sweats, and profound body aches. The first time, I thought I was getting the worst flu ever, but it didn't develop into flu. Nor did any of the usual explanations for fever present. No sore throat, no upper-respiratory involvement, no intestinal problems. The classic tick-related unexplained fever.

    I did have a number of other symptoms I'd never had before, symptoms that are included on the Lyme list. That first time, I didn't find the tick right away, and even when my Lyme-experienced cousin told me my symptoms sounded Lyme-related, I didn't seek treatment. Fortunately, I did find the (engorged) tick (and again the second time), and got on Doxycycline both times.

    Since then, a couple of symptoms specific to my tick infections have recurred, and twice my doctor put me back on Doxy. The prevailing wisdom seems to be that for some people the infection stays in the body, perhaps dormant, and revives when the person's resistance is lowered.

    This time I was bitten in the head, and the tick was attached (according to the person who analyzed it) for at least four days. I started on Doxy as soon as I found it. In fact, the night before I found it, I experienced those tick-specific symptoms. I didn't think I'd been bitten in mid-March; I figured I was having another relapse.

    No fever this time, but the sweats are definitely back, along with widespread joint pains and a serious loss of energy. I'm on month two of Doxy, and thinking I need to do something more about this. I'm just not sure what.

  • liriodendron
    Original Author
    11 years ago
    last modified: 9 years ago

    To all who have wished me a speedy recovery: Thank You! I am feeling steadily better (1 month out), and expect to be back to full strength shortly.

    @Alisande,

    If you think you may have babeseosis at the moment, then insist on being tested. Same with anaplasmosis, both are less-difficult than Lyme to diagnose from blood smears, I believe. (The issue with the blood supply, aside from the traditional head-in-the-sand attitude of the blood industry, and of course the cost, is that there is no rapid-enough test for babeseosis -or possibly the other tick-borne diseases -to work with the need for fresh blood.)

    But as I mentioned, anaplasmosis has distinct, characteristic, changes in routine blood work that are almost diagnostic. I can check next time I am in the medical library if there are specific changes in the case of babeseosis. I may have that info for erlichiosis, if you'd like to know it.

    Anaplasmosis has distinctive mullberry shaped artifacts (morullae) in the disease-specific blood smears (as does erlichiosis, I believe). Babeseosis is different but unless you, like I, have had malaria it's pretty distinctive in the blood test for it. The tests aren't inexpensive (the unadjusted street price for them is $500-$1,000 -each- but my insurance company whacked both of them down considerably. Since you're on Medicare, you'd only pay a percentage of the CMS-negotiated cost which is likely to be as aggressively moderated as that of my own insurance company's contractual rate.

    Since all three are bacterial, not spirochete, -caused it doesn't require the complex analysis of PCR bands that Lyme does.

    But frankly if I was on my second continuous month of Lyme I would have pretty awful constitutional symptoms from that lengthy treatment alone. I can barely make it out the 30 days of a single course before I have disturbed sleep, night sweats, muscle aches and pains, etc. Part of my fierceness about discovering ticks early is to avoid the need for the lengthy course of anti-Lyme doxy. Since doxy won't really do anything for babeseosis - and other drugs will - why keep taking what may be the wrong cure?

    I don't think you would experience symptoms from babeseosis or anaplasmosis (or even Lyme) infection before locating the tick. The incubation time needed to get sick from a still-attached tick would have resulted in a deer tick as big as a green pea, a nasty pearly-grey tight blob. It's hard to imagine you wouldn't have noticed it well before getting sick if it was still attached. Don't you itch like mad when you have a tick attached for more than a few hours, not to mention days? I'd be wild!

    BTW, the tick-hours-of-bite measurement has a built in problem: the aging relies on analysis of stomach digestive contents. But that assumes, and it is not always true, that the bite the tick was discovered making is the only bite, not a second one. Also you mentioned you squashed the critter in removing it.

    You might want to consider beginning more intensive searches for ticks on your body twice a day in order to not miss one. I have hair so long I can sit on it so I do realize it can be hard to check your scalp and hair. I have also found attached ticks under my breasts, in my belly button, on various unmentionable parts of my bottom, and even larval ones between my toes and fingers. I usually keep my long hair tied up in pigtail outdoors. I tuck the pigtail down the back of my shirt to minimize the likelihood of ticks getting caught in my hair. Of course I always have a hat on outside for sun protection, so my head and scalp are less-common tick areas. I do tick-checks at least twice every day of the year, unless I am away from home overnight in the city. It's just like brushing your teeth.

    I'm not convinced that Lyme "lurks in your body" but given that it is caused by spirochete I suppose it's possible. (Another spirochete-caused illness, syphillis, has a proven habit of lingering on and re-occurring, often despite treatment.)

    I know, for certain, that I have had Lyme (from clearly positive blood tests), been treated successfuly and subsequently had lengthy periods of profound physiological, and mental stress, without Lyme popping back up and adding to the problems. And I still have one band for Lyme on the latest PCR, which indicates an old, resolved infection, so there's no question it's still visible in my blood, but not thankfully making a pest of itself. I also still have serological evidence of malaria in my blood and I haven't had any illness from it in more than fifty years!

    But the bacterial diseases (anaplasmosis, babeseosis and erlichiosis) seem extremely unlikely lurkers and later-pouncers, especially if treated. What I definitely think they can do, however, is damage other organs and systems resulting in consequential, long-term problems (like the poor fellow described above who lost his spleen as a result of a babeseosis infection.)

    Your description of high fevers, muscle aches and pains, etc., sound much more like anaplasmosis than Lyme. Did you have any "regular" blood tests done at the time? The average time from bite to onset of symptoms with anaplasmosis is 8 days. I could look that time up for erlichiosis and babseosis, if needed.

    I don't know enough about Fibro, but aren't night sweats and aches and pains part of that, too?

    You may not need to go to any doctor more specialized than your primary care doc to check for the bacterial tick-borne illnesses. And then you'll be able to know, and treat, any that are there. I didn't get any hint that the tests for them lead to confusing, or contradictory results, as I know the Lyme test can, because it is a different, and more complicated test.. If you test negative for them, including having normal routine blood results, you can cross them off your list of worries and look elsewhere. (And get off the wretched doxy!)

    HTH,

    L.

  • tinam61
    11 years ago
    last modified: 9 years ago

    Thanks for posting about this. Scary for sure! We were outside most of yesterday, camped several days last week,etc. We are in a somewhat wooded area. I have been checking the pup religiously and will be even more careful after hearing your story. It's another gorgeous day though, and I'm headed for some more fun under the sun!

    Tina

  • bonnieann925
    11 years ago
    last modified: 9 years ago

    Great information, which will help people here become more aware of tick-borne diseases, particulary if they live in an area where they are common.

    I've had Lyme disease twice. The first time I spent three days in bed with flu-like symptoms (in June) before finally asking my DH to take me to the local ER. I had a series of tests run (including those for Lyme) and a chest x-ray, and was sent home with the diagnosis on a viral infection.

    By Monday my entire body had broken out in huge spotches and I could not walk on my left foot at all. A red area appeared on one of my toes. I went to my primary care doc and she immediately sent me to the hospital to have my foot x-rayed. She told me to stay there and she'd tell me what the next step would be after she spoke to the radiologist. The next step turned out to be a return visit to her and confirmation of Lyme disease by blood test, which resulted in a course of Doxycycline antibiotic. By this time I had disseminated Lyme disease. She was angry (I was furious) that the ER doc missed one clue that I had a bacterial infection based on the blood tests. It took about three weeks before I felt well again.

    In the meantime I had plenty of advice from friends/family and co-workers about long-term effects of Lyme and chronic Lyme. One guy at work runs a support group for chronic Lyme suffers and has to go to NY state to get the periodic course of antibiotics that he says are critical to his managing the illness. None of the Boston docs bought into the chronic Lyme theory at that time. I'm not sure if it has changed.

    We live on a wooded acre in a suburb of Boston and we were well aware of the increase in tick borne diseases in/around our town. At the time we had both a dog and an outdoor cat. We would find and remove ticks from them on a regular basis and we would treat them both with Advantix, but only during the summer. Our dog also had Lyme and had to be on Doxy. Our cat has since died and our newly adopted cat is an indoor cat.

    I'm terrified of getting Lyme again. It has certainly curtailed my gardening and my hiking in the woods. I wear long sleeves, long jeans, white soaks, sneakers and chemicals when I do anything in parts of our yard where the deer roam. We see deer on a regular basis here.

    DH has had tick bites and has gone to the doc right away and has been put on prophylactic antibiotics. One time we had just gotten to the Carribbean on a cruise ship and I found a couple of embedded ticks on his stomach. I sent him to the infirmary and told him to insist on getting Doxy. The doc totally agreed once he heard where we live.

    My best friend (an avid gardener and my hiking buddy) had undetected Lyme and ended up with severe knee swelling and was treated by an infectious control specialist. He had her wear a porte of IV antibiotics out of concern for the disease getting to her heart. She was so sick. Luckily she seems symptom free today. We keep our walks to trails now and dress accordingly.

    The irony, last week on vacation in CA I had the best vensison ever! It makes me want to hunt those deer, the way my grandfather and father used to. Obviouly our town does not allow that. In fact, a bow and arrow bill was shot town at town meeting.

    Our best solution on our property has been to use Liquid Fence. DH spays it regularly on the periphery of our property where the garden areas meet the woods.

    Do those tick checks. This is not a disease to fool around with.

  • denali2007
    11 years ago
    last modified: 9 years ago

    Thank you so much for taking the time to keep us informed. The more we know the better off we wre.

  • liriodendron
    Original Author
    11 years ago
    last modified: 9 years ago

    I am off to bed shortly but I wanted to point out that deer are not really the key element in lowering tranmission of Lyme and other tick-borne diseases.

    It's the deer (mice) and white-footed mice that are the true disease reservoirs. That's where the ticks get infected in the first place by the diseases that they in turn pass on to their later bitee-s, which includes dogs, cats, coyotes, deer, and humans. The part deer play is that they are larger-ranging mammals and can assist in the geographic spread from one area to the next of previously uncommon diseases. Man plays a part in spreading the diseases, too, when their dogs, cattle, horses, sheep, goats are intentionally moved, they can bring along ticks infected with something novel to the area and start up a new hot-spot when the ticks on the beasts drop off and join the local mouse/tick food-chain.

    Little mice hardly go anywhere and a tick, left to it's own devices and finding enough blood-chow from the resident mice, wouldn't stray more than a yard or two in its lifetime.

    So to control spread of Lyme (and other tick-borne diseases), discouraging mouse habitat is more effective because that gets to the root of the problem, where the disease is resident. It's not the fastest fix, but it's the most lasting.

    Mouse habitat is encouraged by: stone walls and landscaping features; light, open ground cover such as a mulched garden; leaf and brush piles -they love brush piles; decorative shrubs and gardens; lightly wooded areas, trees which drop acorns (mast, which also draws deer to feed.) In other words lots of the same things that we find attractive about suburban, woodsy lots.

    If you wanted to reduce mice and their tick cohorts, limiting plantings, no stonewalls, etc. and keeping a closely-mowed lawn is helpful. Coyotes and predatory birds like hawks and owls are also excellent mouse hunters, so taking steps to encourage them, or at least not discourage them, would also be useful. Some larger snakes also eat mice.

    Deer, of course, are part of the equation but while they are vectors to move infected ticks around for larger distances than ticks would naturally roam on their own, they are also victims of tick bites and some diseases.

    I have had good luck recently fencing off deer from extremely attractive portions of my gardens with 4' tall cattle fencing and two higher "rungs" of thin nylon rope strung between fence posts up to about 6.5 feet. Depending on terrain and snow drifting, I don't believe that fences need to be as high as some people say. Depending on the crop I have areas as large as an acre or more fenced in this manner.

    I have very high deer pressure and very attractive crops: fruit trees, vines, and berry bushes and a commercial lilac area, and large areas of plants to protect. We also manage this property as a wildlife refuge and do not allow hunting so we have literally herds of deer in the fields that aren't fenced.

    I am going to make an effort this summer to reduce mouse habitat around the barns and house somewhat. I wasn't out in the woods when I was bitten; I was walking my cat along a path in the field behind one of my barns.

    HTH,

    L.

  • alisande
    11 years ago
    last modified: 9 years ago

    I don't know enough about Fibro, but aren't night sweats and aches and pains part of that, too?

    Aches and pains definitely, but not night sweats--at least not in my experience. And the sweating I associate with tick bites is rather specific: between my fingers, for example. Another tick-related symptom for me is waking hourly all night. There are others as well.

    BTW, the tick-hours-of-bite measurement has a built in problem: the aging relies on analysis of stomach digestive contents. But that assumes, and it is not always true, that the bite the tick was discovered making is the only bite, not a second one. Also you mentioned you squashed the critter in removing it.

    The Vector Control people use several criteria in their analysis, including the condition of a certain body part (I don't know which one). I didn't exactly squash the tick (nor have I ever been able to squash a tick, unless I put it between two rocks), but I did squeeze the contents of its abdomen back into my bloodstream. Nevertheless, the abdomen didn't shrink, but remained the size it was at engorgement.

    I don't think you would experience symptoms from babeseosis or anaplasmosis (or even Lyme) infection before locating the tick. The incubation time needed to get sick from a still-attached tick would have resulted in a deer tick as big as a green pea, a nasty pearly-grey tight blob. It's hard to imagine you wouldn't have noticed it well before getting sick if it was still attached. Don't you itch like mad when you have a tick attached for more than a few hours, not to mention days? I'd be wild!

    The "big as a green pea, nasty pearly-grey tight blog" description sounds more like dog ticks I've seen. The tick was in the back of my head, on the left side, lower than halfway down. I'm a little surprised I didn't feel it while washing my hair, but I take quick showers and wasn't thinking about ticks in mid-March.

    For a few days before I felt the tick I experienced weird stabbing pains in the left side of my head, going from back to front. A quick stab, nothing more, but unlike anything I'd had before. They happened several times a day for a few days, but disappeared when I removed the tick and started on antibiotics.

    No, the tick site didn't itch until after the tick was removed. I tend to be hyper-sensitive to anything itchy, but in this case I was unaware of it.

    Getting tested is a good idea, and one I'll pursue, thanks!

  • chickadee2_gw
    11 years ago
    last modified: 9 years ago

    Liriodendron, good for you for taking control and insisting on further testing. You probably saved your life. My previously healthy and vivacious cousin died from Erlichiosis last June, just 2 days after her 63rd birthday. I don't know all the particulars in her case, because most of the information I learned immediately after her death came from my 88 year old aunt who was still in a state of shock. I'm not sure if my aunt knew of the definite diagnosis at that time. All she said was that they thought it was from a tick bite and my cousin had been tested for Rocky Mountain Spotted Fever. It wasn't until the memorial service when I asked my cousin's husband if they had ever determined what had killed her that I learned she had tested positive for Erlichiosis.

    My aunt had told me that my cousin had just gotten over a Urinary Tract Infection and still wasn't feeling well. Her husband had been sick recently with a cold or virus, and my cousin just thought she had picked it up from him. She did go to the family doctor who thought the same thing and sent her home. I don't know what her symptoms were or if he gave her any medication. After some time passed and she was only feeling worse, she returned to the family doctor. He sent her directly to the local hospital. My cousin lived on a lake in a rural part of NC about an hour north of Raleigh. I wish I could be more specific about how she was treated but my aunt couldn't tell me. We all live in PA. I don't even know how long she was there before they were told my cousin was extremely ill and they couldn't treat her. They medivaced her to Duke Univ. Hosp. where all the specialists are.

    I suppose by the time she got to Duke the Erlichiosis was already ravaging through her body. Her organs started to fail. She had a massive heart attack and they managed to revive her, but they thought if she lived through this she would have extensive brain damage. By the time my aunt and one of her sisters got to see her, she was in a coma. She didn't survive very long after that. I think it was only a matter of a week to 10 days from when she entered the first hospital until she died from a stupid, stupid tick bite. Such a tragedy.

    There's an old medical adage they still use to train physicians. "When you hear the stomping of hooves, think horses, not zebras." Most of the time the symptoms we present are run of the mill, and it's okay to attribute them to an ordinary illness. But when we as patients feel instinctively that something's not right, we have to step up and become proactive in our medical care and think about the zebras.