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Recurring swelling/itchiness?
Hi all,
This is my first post here. I've not been diagnosed with Lyme, but am starting to suspect that may be the source of a lot of my recent symptoms (lightheadedness/dizziness, facial numbness, knee/ankle pain, fatigue, air hunger, etc etc). I'm in the process of trying to find an LLMD, but in the meantime I actually had a question about the site of the tick bite itself. I was originally bit in November 2011 and although I never got the EM rash, the site of the bite remained swollen, red, and itchy for about 9 months. A couple of months ago, after it had finally healed, the bite seemed to come back (swollen, red, itchy). I thought at the time that maybe I was bit by something again, even though it seemed strange that I would get bit in the exact same spot.
It went away after a week or so, but a couple days ago it came back AGAIN! At this point, I'm pretty sure this is the original bite, seeing as it's now the middle of winter...and really, what are the chances of getting bit in the exact same spot 3 times? Plus, I haven't been outside for any length of time for several days.
Has anyone else had experience with this, or know what causes it and how I might stop this cycle from happening again??
This is my first post here. I've not been diagnosed with Lyme, but am starting to suspect that may be the source of a lot of my recent symptoms (lightheadedness/dizziness, facial numbness, knee/ankle pain, fatigue, air hunger, etc etc). I'm in the process of trying to find an LLMD, but in the meantime I actually had a question about the site of the tick bite itself. I was originally bit in November 2011 and although I never got the EM rash, the site of the bite remained swollen, red, and itchy for about 9 months. A couple of months ago, after it had finally healed, the bite seemed to come back (swollen, red, itchy). I thought at the time that maybe I was bit by something again, even though it seemed strange that I would get bit in the exact same spot.
It went away after a week or so, but a couple days ago it came back AGAIN! At this point, I'm pretty sure this is the original bite, seeing as it's now the middle of winter...and really, what are the chances of getting bit in the exact same spot 3 times? Plus, I haven't been outside for any length of time for several days.
Has anyone else had experience with this, or know what causes it and how I might stop this cycle from happening again??
Best Answer
Hi, everyone gave great advice, I am like Rico, the air hunger is most likely Babesia, which was an addition to my Lyme and Bartonella. I tested negative for Babs many times then weak positive. The Bart's for me is mainly lesions all over the body, including on my brain. I was misdiagnosed with MS and have many neurological problems.
It is not unusual for your symptoms to come and go. I also never had a rash from the tick. Finding an LLMD would be great. Support groups too.
Good luck. Keep us posted!
It is not unusual for your symptoms to come and go. I also never had a rash from the tick. Finding an LLMD would be great. Support groups too.
Good luck. Keep us posted!
You guys rock! Such great info...and it's good to know that I'm not crazy. Sometimes, especially if I've had a few good days (like now), I start to question myself. Although I'm sorry for everything you guys had to go through between illness and inconsiderate doctors (!), it's nice to hear about (and learn from) your experiences...and to know that just because my doctor blows me off doesn't mean that what I'm feeling is all in my head. I'll try to find a local support group and go from there. Will keep you posted! :-)
and PS, meant to mention earlier that doxy won't work against babesiosis -- and babs was my first thought when you named your symptoms.
Rico and others have had really bad babs symptoms, and while mine were pretty disabling, I think I got off lightly by comparison to others.
Everybody's different, and nonLLMDs just don't ever seem to think of babesia. Go figure.
So, we're here when we can help -- take care, keep us posted! J.
Rico and others have had really bad babs symptoms, and while mine were pretty disabling, I think I got off lightly by comparison to others.
Everybody's different, and nonLLMDs just don't ever seem to think of babesia. Go figure.
So, we're here when we can help -- take care, keep us posted! J.
It sounds like you're doing the right thing in finding a new doc. It drives me crazy when doctors are doubtful and dismissive of a patient's story. Unfortunately, too many of them were taught to practice "evidence based" medicine. Unfortunately, to these docs, anything a patient cannot prove doesn't count. Only measurable results or "objective" evidence counts. *Sigh* I think Jackie's neuro should have been a lab researcher or a vet. He obviously has zero concern for his patients' well being.
ILADS is a great source for LLMDs. You'll want to make sure any doc you see follows their treatment guidelines. You might also try to find a local Lyme support group. They will know who's good and who isn't. A state Lyme Disease association can also be helpful. You are wise to tackle it now. It doesn't go away by itself. It also gets more costly to treat as it gets worse.
ILADS is a great source for LLMDs. You'll want to make sure any doc you see follows their treatment guidelines. You might also try to find a local Lyme support group. They will know who's good and who isn't. A state Lyme Disease association can also be helpful. You are wise to tackle it now. It doesn't go away by itself. It also gets more costly to treat as it gets worse.
About people with Lyme not getting the flu etc: I suspect it's because the immune system is already on high alert against Lyme, so any other stray bug that happens to wander onto the battlefield just gets obliterated, no questions asked.
Another major illness or a Lyme reinfection, tho, and it can overwhelm the heroic job your immune system is currently doing.
I think this ability to 'look fine' is something that confuses nonLLMDs, and induces them to conclude it's just someone looking attention ... especially 'neurotic' females. Happened to me in my quest for a diagnosis of what turned out to be Lyme and babesia: I was a fog-brained mess and could hardly find my way out of the shower. One of the 20-odd docs I saw (preLLMD) did a cursory interview/exam with me, then as he left the exam room without saying anything to me about what might be wrong, shouted down the hall to the front desk, "NO FOLLOW UP APPOINTMENT FOR THIS ONE."
True story, word for word. He was a neurologist with a waiting room of people with canes and walkers and palsy and all sorts of obvious ailments. Me? I was deemed a faker because I was still walking and talking. Thinking, no; feeling awful, yes. But I was walking and talking, so couldn't REALLY be sick.
My immune system is wicked strong (knock on wood) like yours, so I hear you about resisting the usual seasonal ailments. Can't remember the last time I had a cold. Just listen to the subtle hints from your body and don't try to minimize them or explain them away... they are real, and they may help you new doc figure out what you might have.
In the old literature, another disease also caused by a spirochetal bacterium (as is Lyme) was called 'the great pretender', because it manifested in so many different ways in different people that docs were easily fooled into a wrong diagnosis. That disease, like Lyme, had subtle and variant effects in different people, and in the same person over time. That disease was and is ... syphilis. First cousin to Lyme. Don't be alarmed by that, but do take it seriously ... as I know you are already.
Treatable and curable, just takes the right doc with the right understanding. You go, girl! Keep us posted --
Another major illness or a Lyme reinfection, tho, and it can overwhelm the heroic job your immune system is currently doing.
I think this ability to 'look fine' is something that confuses nonLLMDs, and induces them to conclude it's just someone looking attention ... especially 'neurotic' females. Happened to me in my quest for a diagnosis of what turned out to be Lyme and babesia: I was a fog-brained mess and could hardly find my way out of the shower. One of the 20-odd docs I saw (preLLMD) did a cursory interview/exam with me, then as he left the exam room without saying anything to me about what might be wrong, shouted down the hall to the front desk, "NO FOLLOW UP APPOINTMENT FOR THIS ONE."
True story, word for word. He was a neurologist with a waiting room of people with canes and walkers and palsy and all sorts of obvious ailments. Me? I was deemed a faker because I was still walking and talking. Thinking, no; feeling awful, yes. But I was walking and talking, so couldn't REALLY be sick.
My immune system is wicked strong (knock on wood) like yours, so I hear you about resisting the usual seasonal ailments. Can't remember the last time I had a cold. Just listen to the subtle hints from your body and don't try to minimize them or explain them away... they are real, and they may help you new doc figure out what you might have.
In the old literature, another disease also caused by a spirochetal bacterium (as is Lyme) was called 'the great pretender', because it manifested in so many different ways in different people that docs were easily fooled into a wrong diagnosis. That disease, like Lyme, had subtle and variant effects in different people, and in the same person over time. That disease was and is ... syphilis. First cousin to Lyme. Don't be alarmed by that, but do take it seriously ... as I know you are already.
Treatable and curable, just takes the right doc with the right understanding. You go, girl! Keep us posted --
Wow, thank you for taking the time to post all that information!! I really appreciate it :-)
Funny you should mention my immune system - I feel like it is pretty strong...I rarely get sick, and don't even remember the last time I had the flu (probably when I was a kid). The thing is, my husband had the flu for over a week at the end of December..and once again, I didn't get sick! I thought if I did have Lyme or another infection, I would certainly get sick considering my immune system would already be compromised. I did some Google searching, and found a lot of people who posted that they never got sick when they had Lyme, even before they'd started treatment. I can't find any reason why that would happen though, other than what other people speculate...but I guess it still doesn't rule out Lyme as a possibility for me.
I'll post to see if anyone can PM me with an LLMD recommendation - thanks again for all your help!
Funny you should mention my immune system - I feel like it is pretty strong...I rarely get sick, and don't even remember the last time I had the flu (probably when I was a kid). The thing is, my husband had the flu for over a week at the end of December..and once again, I didn't get sick! I thought if I did have Lyme or another infection, I would certainly get sick considering my immune system would already be compromised. I did some Google searching, and found a lot of people who posted that they never got sick when they had Lyme, even before they'd started treatment. I can't find any reason why that would happen though, other than what other people speculate...but I guess it still doesn't rule out Lyme as a possibility for me.
I'll post to see if anyone can PM me with an LLMD recommendation - thanks again for all your help!
Thank you both for responding! I haven't been tested for Lyme...back when I got bit, my doctor actually did prescribe a 2 week course of doxy to be safe. What concerns me is that the head of the tick remained stuck inside me for over a month. I asked her if she could remove it, and she said it wasn't necessary since it would work its way out on its own. At the time, I didn't think twice about Lyme...and in fact, hadn't really looked into it until I began feeling unwell several months ago.
I actually have another bite that looks exactly like the first tick bite (only this is in a different area)...I didn't see what bit me there. I thought at first a mosquito, then when it didn't go away I figured it was a spider...now I've had it for 9 months I'm wondering if it wasn't another tick! It's starting to go away now, but if history repeats itself, it will probably come back like the first one has been doing.
Admittedly, my symptoms are mild compared to most. I can still work, drive, do day-to-day activities...I can't exercise much though (just walking my dogs is exhausting). Before this I was running regularly and hiking often. I would like to figure this out sooner rather than later, because it seems if it IS Lyme, things are going to get much worse.
My doctor did do an MRI (normal), cortisol test (normal), and CT scan of my sinuses (normal). I'd like to get some other blood work done to rule out things besides Lyme...unfortunately she's made it clear at this point that she thinks I'm overreacting and is not interested in trying to figure this out. I've now requested my medical records from her office, and once I have them in hand I'm going to try to find a new primary care doctor. As for an LLMD, can I post here and have people PM me with recommendations? I have a couple of names, but I always feel better knowing someone else had a positive experience. Thanks again for your help!!
I actually have another bite that looks exactly like the first tick bite (only this is in a different area)...I didn't see what bit me there. I thought at first a mosquito, then when it didn't go away I figured it was a spider...now I've had it for 9 months I'm wondering if it wasn't another tick! It's starting to go away now, but if history repeats itself, it will probably come back like the first one has been doing.
Admittedly, my symptoms are mild compared to most. I can still work, drive, do day-to-day activities...I can't exercise much though (just walking my dogs is exhausting). Before this I was running regularly and hiking often. I would like to figure this out sooner rather than later, because it seems if it IS Lyme, things are going to get much worse.
My doctor did do an MRI (normal), cortisol test (normal), and CT scan of my sinuses (normal). I'd like to get some other blood work done to rule out things besides Lyme...unfortunately she's made it clear at this point that she thinks I'm overreacting and is not interested in trying to figure this out. I've now requested my medical records from her office, and once I have them in hand I'm going to try to find a new primary care doctor. As for an LLMD, can I post here and have people PM me with recommendations? I have a couple of names, but I always feel better knowing someone else had a positive experience. Thanks again for your help!!
Sorry to hear you're struggling with these symptoms. I have also had the air hunger, and my doc finally concluded I have Babesia in addition to my Lyme and Bartonella. (I tested negative three times for Babesia, and initially herbal treatments didn't seem to make much difference.) While some patients with just Lyme do get air hunger, it is a big red flag for Babesia. That is important, as if you have underlying, untreated Babesia, the Lyme might not go away.
I have read of other Lyme patients with an itchy or raised rash. The good thing about all the publicity about the erythema migrans is that only Lyme causes it. It is definitive for Lyme. But....about half of Lyme patients don't get a rash at all. And of the ones who do, some get a splotchy rash; others get an oval rash without the clearing in the middle. Some get multiple oval or round rashes, or an oval rash with raised bumps in the middle. Some get hives. I had a flat red rash that was a bit warm, like a sunburn. But mine lasted just a couple days, so it was technically a hypersensitivity reaction to the tick bite, and not an erythema migrans.
Unfortunately, doctors are terribly ignorant about this wide spectrum of rashes (and non-rashes!) and many dismiss anything other than a bulls eye rash as "not Lyme." What is even more important than your recurring rash is your symptoms.
Have you been tested yet? A negative does not exclude it. I tested false negative on a blood screening test and a CSF test. I tested positive later at IgeneX. If your regular doc won't diagnose you and treat you, you'll need to find a LLMD. The sooner the better.
I have read of other Lyme patients with an itchy or raised rash. The good thing about all the publicity about the erythema migrans is that only Lyme causes it. It is definitive for Lyme. But....about half of Lyme patients don't get a rash at all. And of the ones who do, some get a splotchy rash; others get an oval rash without the clearing in the middle. Some get multiple oval or round rashes, or an oval rash with raised bumps in the middle. Some get hives. I had a flat red rash that was a bit warm, like a sunburn. But mine lasted just a couple days, so it was technically a hypersensitivity reaction to the tick bite, and not an erythema migrans.
Unfortunately, doctors are terribly ignorant about this wide spectrum of rashes (and non-rashes!) and many dismiss anything other than a bulls eye rash as "not Lyme." What is even more important than your recurring rash is your symptoms.
Have you been tested yet? A negative does not exclude it. I tested false negative on a blood screening test and a CSF test. I tested positive later at IgeneX. If your regular doc won't diagnose you and treat you, you'll need to find a LLMD. The sooner the better.
Welcome to MedHelp Lyme --
I would do what you are doing -- looking to find an LLMD. If you need help, let us know -- someone here may have suggestions to send you by PM (private message) through this site, since we don't post LLMD names here in the open (too easy for the cranky medical boards to track the docs down if we post the names).
I never had a rash OR saw the tick that gave me Lyme, so I'm not in a position to give personal experience, but others here have posted (some quite recently) about an effect similar to what you are having -- on top of the other symptoms, you get a red area that comes and goes.
In your situation, I would first see a knowledgeable doc who can evaluate your symptoms and know what to test you for, since Lyme ticks often carry other infections too that have their own set of symptoms. The tests are useful but not the last word, so the 'knowledgeable' aspect of the doc is critically important to have.
The once you've got the diagnosis, a treatment plan will be set up, because the different infections sometimes need different meds and some are easier and faster to cure, so those often are addressed first.
The air hunger you mention has also been mentioned by others here, and I'll let them speak to that aspect since it's not something I had.
Good for you for approaching this in the way that you are -- thoughtfully and carefully! We're glad to share what we've experienced and learned --
Catch you later --
I would do what you are doing -- looking to find an LLMD. If you need help, let us know -- someone here may have suggestions to send you by PM (private message) through this site, since we don't post LLMD names here in the open (too easy for the cranky medical boards to track the docs down if we post the names).
I never had a rash OR saw the tick that gave me Lyme, so I'm not in a position to give personal experience, but others here have posted (some quite recently) about an effect similar to what you are having -- on top of the other symptoms, you get a red area that comes and goes.
In your situation, I would first see a knowledgeable doc who can evaluate your symptoms and know what to test you for, since Lyme ticks often carry other infections too that have their own set of symptoms. The tests are useful but not the last word, so the 'knowledgeable' aspect of the doc is critically important to have.
The once you've got the diagnosis, a treatment plan will be set up, because the different infections sometimes need different meds and some are easier and faster to cure, so those often are addressed first.
The air hunger you mention has also been mentioned by others here, and I'll let them speak to that aspect since it's not something I had.
Good for you for approaching this in the way that you are -- thoughtfully and carefully! We're glad to share what we've experienced and learned --
Catch you later --
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That your symptoms are mild may simply indicate that you have a strong immune system and are generally healthy -- your immune system can keep things under wraps for a long time, until you get another illness (even the flu) which taxes your body and overruns the immune system's ability to cope with more than one illness.
I felt sort of tired and not great for a couple of years .... which looking back were a mild version of the HUGE version I got after another tick bite back East that gave me Lyme and babesiosis. Another member of my family said the same thing, after we were both treated: I felt tired and run down for a long time, didn't think too much of it except that I was overdoing as usual, but then when I got (re-)infected, my immune system crashed and I was really really sick. That's when I went through 20 docs until one of them in desperation tested me for Lyme, it came back positive, but the doc said I couldn't possibly have Lyme because I wasn't 'near death', as her patients with Lyme were. (Duh. Well, if you don't treat people before they get really really sick, what do you expect?)
So your immune system may be holding off the infection for now, but that doesn't mean you are not infected. The sooner you treat, the easier and surer the cure, and the less likely you will crash into a deep hole that takes a long time to climb out of. Lyme will not go away by itself. So I agree with you to get whatever it is identified and dealt with.
I never saw a tick or had a rash, so that's not a necessary part of diagnosis except to docs who don't really understand Lyme and its coinfections.
MRIs and a CT scan are not useful to diagnose Lyme, and I don't know that a cortisol test would give any useful information except to rule out adrenal insufficiency or something (not medically trained here. Lyme specialists (LLMD is patient slang for a Lyme-literate MD, one who thinks more progressive thoughts about Lyme) often use a SPECT scan instead of an MRI, because a SPECT scan looks for areas of low blood flow (perfusion) in the brain, which is diagnostic for Lyme. (MRIs are typically used to diagnose MS, but some aspects of Lyme will apparently show up in an MRI -- it's just that you can't tell the difference between MS and Lyme thru an MRI. SPECT scans however do. It's like you can eat soup with a fork, but you're going to miss a lot of what's in the bowl if you do.)
About blood work, I wouldn't worry about your current doc not ordering the tests, because like SPECT vs MRI, it takes an LLMD who knows what to order and what to look for to even have Lyme considered as a possibility. The standard tests for Lyme (ELISA and Western blot) are measures of your immune system reaction to an infection, and after a relatively short period of time, the immune system gives up, assuming that it's killed off whatever was ailing you. So you get a negative test, even tho you are still infected with Lyme.
An LLMD would likely order testing through IGeneX labs which look for direct DNA evidence of Lyme bacteria. IGeneX has an extensive website if you are interested. NonLLMDs think IGeneX are quacks, and usually will not order or rely on IGeneX testing. In any event, Lyme is supposed to be a *clinical* diagnosis, based on history (tick bite, if known) and symptoms (you have these), aided by tests -- but nonLLMDs rely wholly on the lousy ELISA/W.blot tests and are happy to tell you that you are fine, go home. This is the reaction you seem to be getting from you current primary doc.
About posting for a Lyme doc, we do NOT post doc's names in the open here, because the local and state medical boards are too often keen to put LLMDs out of business for being quacks. You can however post here a new question like 'Need LLMD near Boston MA' or wherever you are, and then you might get a response through the 'private message' (PM) system here. If you have a message waiting for you, you will see "(1)" next to "Inbox" in the upper right corner of this screen.
Also you can email to
contact [at] ILADS [dot] org
and tell them where you are located and how far you can travel to see an LLMD. ILADS (Intl Lyme and Associated Diseases Society) is the main voluntary group for docs who 'believe' in Lyme, and ILADS can send you the names of member docs near you. Doesn't mean the docs are any good, but they at least 'believe' in Lyme. Keep you antennae out, because there are indeed some wacky docs with wacky ideas, since Lyme is a developing area and very unsettled. You'll figure it out, and if you're uncertain about a course of action recommended to you, you can post here with the recommendations (no dr name of course) and see how it compares with our experiences, if that's helpful.
I know, this is all overwhelming, but you'll get the hang of it. The sooner you are tested, the better, because if you have Lyme and/or a coinfection, the sooner you are treated, the faster and surer the cure.
Sorry to run on here, let us know how we can help. But I would do what you are doing: finding an LLMD for a work up and go from there. You may have to pay out of pocket for the LLMD and then get reimbursed by your insurance company, but it's well worth it.
... And always get copies of all tests done by previous docs and future docs, and keep a set of your own at home, so you can share them with future docs as need be. Longitudinal data (through time) speaks to a doc who knows how to read it.
Let us know how we can help -- best wishes!