Aa
Should I be worried?
Hi there!
I'm an 18 year old male, last summer (2009) I was out at my summer place and a tick thought it would be a blast to go ahead and suck some blood outta me. The day after I had this itchy spot on my ankle and thought it was a musquito bite, turns out it wasnt, the whole area around it got red etc.. So I went to the doctor and was diagnosed with lyme disease. Took the antibiotics, and the swelling went away and that was that.
So anyways today (about 6-7 months later) I was itching the part of my ankle that was infected before, and now the old "bite hole" from the tick (which I thought was gone O_O ) has become slightly visible. It itches a lot if I touch it which it did not do before and I dont know if it could be because I itched it or not, but within about a 1-2mm radius of the bite, It's a little red/pink. If I look at my ankle sideways the bite area has clearly made a "bump" as if theres pus inside the wound or something.
My plan is just to wait a day or two and see if I see more redness around the bite but I've been looking around for answers if lyme disease can reoccur just randomly like this, but the only answers I'm finding are about women who have been pregnant and suffered from symptoms. I myself never had any symptoms when I was diagnosed, I'm guessing thats because I took antibiotics within a week after I got the bite. I'm also not feeling any symptoms now. But I would really appreciate any expert / experienced opinion on if this pus-filling-itchy bite mark could be the lyme coming back, I certaintly hope not =[
I'm an 18 year old male, last summer (2009) I was out at my summer place and a tick thought it would be a blast to go ahead and suck some blood outta me. The day after I had this itchy spot on my ankle and thought it was a musquito bite, turns out it wasnt, the whole area around it got red etc.. So I went to the doctor and was diagnosed with lyme disease. Took the antibiotics, and the swelling went away and that was that.
So anyways today (about 6-7 months later) I was itching the part of my ankle that was infected before, and now the old "bite hole" from the tick (which I thought was gone O_O ) has become slightly visible. It itches a lot if I touch it which it did not do before and I dont know if it could be because I itched it or not, but within about a 1-2mm radius of the bite, It's a little red/pink. If I look at my ankle sideways the bite area has clearly made a "bump" as if theres pus inside the wound or something.
My plan is just to wait a day or two and see if I see more redness around the bite but I've been looking around for answers if lyme disease can reoccur just randomly like this, but the only answers I'm finding are about women who have been pregnant and suffered from symptoms. I myself never had any symptoms when I was diagnosed, I'm guessing thats because I took antibiotics within a week after I got the bite. I'm also not feeling any symptoms now. But I would really appreciate any expert / experienced opinion on if this pus-filling-itchy bite mark could be the lyme coming back, I certaintly hope not =[
Don't blame yourself! All you did was live your life, and so was the tick living his miserable existence making mischief.
A part of Lyme (sometimes a big part) for many of us is anxiety over the illness and the poor treatment we get from MDs (laughing at you! unacceptable behavior) ... and also anxiety that is a side effect of the illness. Your message mentions confusion and fright and thinking horrible thoughts, and all that is a natural reaction -- not only to the prospect of illness, but also a natural reaction to the infection. Lyme does very odd things to each of us, and anxiety and emotionality is very common among Lyme patients.
I personally cannot find the boundary between (1) anxiety over having a disease that is not 'believed' by mainstream medicine and (2) anxiety as a part of the illness. So I have just accepted it all as a big load of anxiety and try to relax and be kind to myself about it.
I saw my LLMD yesterday, and found out that the tick that bit me last May probably gave me Lyme again, along with the other disease that we already knew about. So I've been having a dis-spiriting day here myself. I'm trying to be kind to myself and think of the good things going on, but I know it's hard.
Be kind to yourself, and keep looking for the right MD. He/she is out there. Perhaps your earlier MD can be educated.
... And for those of us in the US looking at turning health care over to the federal government .... think about the message above from our Swedish friend: "But in order for me to see a specialist, I'll have to get a referral from the MD I'm currently seeing." That happens now at HMOs in a certain fashion, but when 'Uncle Sam MD' becomes the only game in town, we will not be able to just pick up the phone and make an appointment with an LLMD we heard about somewhere. When the food is free, the quality ain't all that good. And lack of choice is very frightening to me, as a Lyme patient. /end of rant/
Take care and keep us posted. And be kind to yourself and your ailing body.
A part of Lyme (sometimes a big part) for many of us is anxiety over the illness and the poor treatment we get from MDs (laughing at you! unacceptable behavior) ... and also anxiety that is a side effect of the illness. Your message mentions confusion and fright and thinking horrible thoughts, and all that is a natural reaction -- not only to the prospect of illness, but also a natural reaction to the infection. Lyme does very odd things to each of us, and anxiety and emotionality is very common among Lyme patients.
I personally cannot find the boundary between (1) anxiety over having a disease that is not 'believed' by mainstream medicine and (2) anxiety as a part of the illness. So I have just accepted it all as a big load of anxiety and try to relax and be kind to myself about it.
I saw my LLMD yesterday, and found out that the tick that bit me last May probably gave me Lyme again, along with the other disease that we already knew about. So I've been having a dis-spiriting day here myself. I'm trying to be kind to myself and think of the good things going on, but I know it's hard.
Be kind to yourself, and keep looking for the right MD. He/she is out there. Perhaps your earlier MD can be educated.
... And for those of us in the US looking at turning health care over to the federal government .... think about the message above from our Swedish friend: "But in order for me to see a specialist, I'll have to get a referral from the MD I'm currently seeing." That happens now at HMOs in a certain fashion, but when 'Uncle Sam MD' becomes the only game in town, we will not be able to just pick up the phone and make an appointment with an LLMD we heard about somewhere. When the food is free, the quality ain't all that good. And lack of choice is very frightening to me, as a Lyme patient. /end of rant/
Take care and keep us posted. And be kind to yourself and your ailing body.
Just got back from seeing another MD. Boy o boy did he **** me off, sitting in his chair practically laughing at the fact that I was worried about not getting a high enough dosage of antibiotics and I'm worried 10 days won't kill the spirochetes.
He said the "Kåvepelin fenoximetylpenicillinkalium 1g 3x10" (Name of the antibiotics I'm on) is a high dosage. This is exactly the same crap I got last time 7 months ago, which obviously didn't kill the damn bacteria since I have it again.......But that's to complex for him to understand I suppose. When I called today I asked if there was a MD I could see that has specialized in Lyme or is at least experienced with the disease, and I got an appointment with this guy....Money well wasted.
Also he said he's never heard of chronic Lyme leading to MS/MA and basically "people ending up in wheelchairs" Quote: "If there was a case of this happening, it would end up in the Swedish medical journals and I would have read about it there" So I just said, "Ok, thanks for the information", got up and left (shortly afterwards).
I asked him about getting checked for Ehrlichia, Babesia, Bartonella, that can come from Lyme-bearing ticks and he said that's not necessary.
He told me to not worry about a thing and if symptoms continue after this treatment then I should come back. And as the first MD I met, also said that I should be weary of what I'm reading on the internet, especially what sources the information is coming from. I'm still seeing the first MD I met on next Friday, I hope she has a brain or at least is open-minded towards Lyme..
Although my grandmas old neighbour (she moved, not old as in age =P) is a nurse or MD I'm actually not sure, I've known her since I was a little toddler, has "connections" But in order for me to see a specialist, I'll have to get a referral from the MD I'm currently seeing.
I'm really confused now whether I should be as worried as I'am or take a chill pill. Last night when I was laying in bed I was just thinking horrible thoughts...and I can't stop thinking about Lyme =[ I'm frightened I'll wake up paralyzed the next morning, every time I feel any part of my body hurt for a single second I think I have chronic Lyme.....
And all of this could have been avoided if I didn't wear those long black sweat pants when I was out at my summer house. I know I'll get through this either way but It's just so emotionally frustrating, and I've only recently been diagnosed, I can't imagine what you all have been through but in my eyes your all fighters, and I hope we all live a happy, healthy life and in the near future we all get cured.
He said the "Kåvepelin fenoximetylpenicillinkalium 1g 3x10" (Name of the antibiotics I'm on) is a high dosage. This is exactly the same crap I got last time 7 months ago, which obviously didn't kill the damn bacteria since I have it again.......But that's to complex for him to understand I suppose. When I called today I asked if there was a MD I could see that has specialized in Lyme or is at least experienced with the disease, and I got an appointment with this guy....Money well wasted.
Also he said he's never heard of chronic Lyme leading to MS/MA and basically "people ending up in wheelchairs" Quote: "If there was a case of this happening, it would end up in the Swedish medical journals and I would have read about it there" So I just said, "Ok, thanks for the information", got up and left (shortly afterwards).
I asked him about getting checked for Ehrlichia, Babesia, Bartonella, that can come from Lyme-bearing ticks and he said that's not necessary.
He told me to not worry about a thing and if symptoms continue after this treatment then I should come back. And as the first MD I met, also said that I should be weary of what I'm reading on the internet, especially what sources the information is coming from. I'm still seeing the first MD I met on next Friday, I hope she has a brain or at least is open-minded towards Lyme..
Although my grandmas old neighbour (she moved, not old as in age =P) is a nurse or MD I'm actually not sure, I've known her since I was a little toddler, has "connections" But in order for me to see a specialist, I'll have to get a referral from the MD I'm currently seeing.
I'm really confused now whether I should be as worried as I'am or take a chill pill. Last night when I was laying in bed I was just thinking horrible thoughts...and I can't stop thinking about Lyme =[ I'm frightened I'll wake up paralyzed the next morning, every time I feel any part of my body hurt for a single second I think I have chronic Lyme.....
And all of this could have been avoided if I didn't wear those long black sweat pants when I was out at my summer house. I know I'll get through this either way but It's just so emotionally frustrating, and I've only recently been diagnosed, I can't imagine what you all have been through but in my eyes your all fighters, and I hope we all live a happy, healthy life and in the near future we all get cured.
To our Swedish friend,
Do not give up!
Keep taking the antibiotics you have. It probably can't hurt, and if you stop too soon, then the bacteria that were strong enough to survive a few days of drugs will just reproduce, and you are on the way to drug-resistant bacteria. I am not medically trained, but I read this advice about antibiotics in many places.
If you have not done so already, take photos (even a cell-phone photo) of your bite, and put a ruler next to the bite so the size is indicated. Keep taking one photo every day until the rash is gone. I am amazed at how MDs love to see my little photos -- it is evidence!
Many, many MDs are not knowledgable about Lyme, so keep searching for an MD you feel is up-to-date and open-minded. We all learn to do a careful dance from one MD to another, as we search for the right combination of MDs to treat us.
Some of us here were infected years and years ago, before there were many Lyme MDs, so your infection is relatively new compared to those with old infections. Lyme is very difficult to cure in some people, but even they can be cured after many years. Not always, but often enough that it only makes sense to find a Lyme MD and make the effort. *Do not give up!*
There is a movie called 'Under Our Skin' about Lyme. You might want to watch it, it is on DVD and perhaps online now also. It is a bit scary in places, showing some very sick people, but even they got well. The blonde woman in the film attended a showing of the movie here, and she is very healthy now! She was in very bad shape before treatment. --- There is also a book about Lyme called 'Cure Unknown' by Pamela Weintraub -- it is heavy going to read, and it might be more than you want to go through, but it is very interesting, weaving science and politics and people all together.
You are asking all the right questions, and you are young and sound strong, so you have all the right things going for you to be completely cured. But keep pressing ahead, and stay in touch and let us know how you do and what you do. Best wishes!
Do not give up!
Keep taking the antibiotics you have. It probably can't hurt, and if you stop too soon, then the bacteria that were strong enough to survive a few days of drugs will just reproduce, and you are on the way to drug-resistant bacteria. I am not medically trained, but I read this advice about antibiotics in many places.
If you have not done so already, take photos (even a cell-phone photo) of your bite, and put a ruler next to the bite so the size is indicated. Keep taking one photo every day until the rash is gone. I am amazed at how MDs love to see my little photos -- it is evidence!
Many, many MDs are not knowledgable about Lyme, so keep searching for an MD you feel is up-to-date and open-minded. We all learn to do a careful dance from one MD to another, as we search for the right combination of MDs to treat us.
Some of us here were infected years and years ago, before there were many Lyme MDs, so your infection is relatively new compared to those with old infections. Lyme is very difficult to cure in some people, but even they can be cured after many years. Not always, but often enough that it only makes sense to find a Lyme MD and make the effort. *Do not give up!*
There is a movie called 'Under Our Skin' about Lyme. You might want to watch it, it is on DVD and perhaps online now also. It is a bit scary in places, showing some very sick people, but even they got well. The blonde woman in the film attended a showing of the movie here, and she is very healthy now! She was in very bad shape before treatment. --- There is also a book about Lyme called 'Cure Unknown' by Pamela Weintraub -- it is heavy going to read, and it might be more than you want to go through, but it is very interesting, weaving science and politics and people all together.
You are asking all the right questions, and you are young and sound strong, so you have all the right things going for you to be completely cured. But keep pressing ahead, and stay in touch and let us know how you do and what you do. Best wishes!
Thank you again JackieCalifornia, for replying back with such useful information =]
I did read the Burrascano's guildelines, atleast most of it, the parts I understood.
When you say so recently infected, I don't really understand whether I'am or not. I mean it was about 7 months ago that I got diagnosed, and now it came back, doesn't that mean It's been in my system this whole time?
Every time I do more research I get more and more scared of what this damn Lyme will/can/has do/done to me now or in the near/far future...It's hitting me like a bombshell. It just angers me so much that the previous MD I met didn't give me a heads up at all to look in to it.
I still do not understand the difference between Lyme and Chronic Lyme, could anyone please explain it on a more basic level?
As for the treatment, you are so right. I'm on "normal antibiotics" for 10 days, this is ridiculous, I can't believe she gave me a 10 day subscription!!!!! And the Lyme can just get stronger from crap antibiotics like this. I'm going to wake up early tomorrow and call to ask for a doctor who is serious about Lyme..Should I stop taking these antibiotics I'm on now? Gaahhhh.....this is so messed up.
An update though, the "bullseye" rash is almost completely gone and the skin is feeling soft and normal again after just 1 day. But this is Lyme were talking about...so it could just as well be in my brain/heart/spine apparently.....All I can do is have hope that I'm early enough at treating it.
Thanks for all the help and support =] Major hugs from Sweden!
I did read the Burrascano's guildelines, atleast most of it, the parts I understood.
When you say so recently infected, I don't really understand whether I'am or not. I mean it was about 7 months ago that I got diagnosed, and now it came back, doesn't that mean It's been in my system this whole time?
Every time I do more research I get more and more scared of what this damn Lyme will/can/has do/done to me now or in the near/far future...It's hitting me like a bombshell. It just angers me so much that the previous MD I met didn't give me a heads up at all to look in to it.
I still do not understand the difference between Lyme and Chronic Lyme, could anyone please explain it on a more basic level?
As for the treatment, you are so right. I'm on "normal antibiotics" for 10 days, this is ridiculous, I can't believe she gave me a 10 day subscription!!!!! And the Lyme can just get stronger from crap antibiotics like this. I'm going to wake up early tomorrow and call to ask for a doctor who is serious about Lyme..Should I stop taking these antibiotics I'm on now? Gaahhhh.....this is so messed up.
An update though, the "bullseye" rash is almost completely gone and the skin is feeling soft and normal again after just 1 day. But this is Lyme were talking about...so it could just as well be in my brain/heart/spine apparently.....All I can do is have hope that I'm early enough at treating it.
Thanks for all the help and support =] Major hugs from Sweden!
DOCTORS! I must say, please heed Jackie's post - especially about syphilis. Google neurosyphilis and study that disease. Like she said, it's a spirochete, just like borrellia borgdorferi. Yes, they are different, but if a bacteria can travel thru a tick's "mouth (whatever they have)", why can't they travel in semen?
Good to hear you are making progress with diagnosis etc. I am glad that are feeling better about your situation, but I have some concerns, having been through Lyme personally and also with family and friends, about the approach your MD is taking. I do not want to distress you by my comments, but time is important in getting treated properly, and so I will state plainly what my reactions are ... AFTER reminding everyone that I am NOT medically trained, just a humble Lyme patient still working my way through all this myself after several years.
And so:
I think in English we would say the 'skin' version is 'cutaneous.' However I must say that the idea that bacteria cannot cross into the central nervous system/brain is not logical. Lyme bacteria are spiral in shape (spirochetal) and they are in your bloodstream, not 'just' in your skin. Bacteria in the blood flow freely throughout your body. There has been some talk about not crossing the blood/brain barrier, but to my knowledge, that view has been discredited. How would someone get Lyme in the brain/nervous system if not through the blood? Is there a little strainer or sieve that keeps the bacteria out of the brain, and it just doesn't function in some people? Do people who get 'Lyme brain' get it only if the ticks bite your brain?
Of course not. Lyme is called the 'new great imitator', as syphilis used to be called the 'great imitator' of other diseases. Lyme manifests itself in many ways, and in different ways in different people. Some get it worse in the joints, some worse in the brain, etc., which is part of what makes diagnosis so difficult. The early Lyme researchers were rheumatologists and neurologists, so their standards for diagnosing Lyme depended on finding problems in the part of the body in which they each specialized -- the rheumatologists looked for swollen knees, and if you didn't have swollen knees, then you did not, COULD not, have Lyme. Well, my knees never swelled up, but I have a documented case of Lyme, and so do many other people. Therefore just because you do not have a particular symptom often shown by others does not mean that you do not have Lyme or that Lyme is not lying quietly in your brain, or looking to do so.
(Like syphilis, much of the damage done to the brain by Lyme can perhaps take place later in life. I wonder why there are so many elderly with dementia these days ... I knew many elderly people when I was young, had great grandparents who lived into their 80s and 90s, and only one of them was 'demented' -- she had a stroke when in her 40s and was not quite right in the head after that. Where does the current epidemic of Alzheimers come from? I don't know, but I do wonder ....)
Another point: a different spirochetal bacterium (not the one that causes Lyme) causes syphilis. One gets a sore at the point of entry into the skin, often the genitals, and then eventually, if untreated, the infection moves into the brain via the bloodstream. It is not logical that one spirochete can move from entry site to blood to brain, but another cannot. Can Lyme be transmitted by semen? I have seen little written on that topic, but the answer is at least 'maybe.' Others here may have more data.
And on a final point, 10 days of antibiotics sounds very short from what I understand. Why take the chance?
If you have not read Burrascano's guidelines on ILADS [dot] org, PLEASE do so, and please consider asking your MD to do so -- she sounds kindly and helpful, and so perhaps simply unfamiliar with cutting-edge medicine in regard to Lyme.
I am sorry to bring up all this possible bad news, but you are so recently infected that you stand a VERY good chance of a complete and quick cure if treated properly NOW.
Others here will have suggestions and advice also. Best wishes to you for a fast and full recovery!
And so:
I think in English we would say the 'skin' version is 'cutaneous.' However I must say that the idea that bacteria cannot cross into the central nervous system/brain is not logical. Lyme bacteria are spiral in shape (spirochetal) and they are in your bloodstream, not 'just' in your skin. Bacteria in the blood flow freely throughout your body. There has been some talk about not crossing the blood/brain barrier, but to my knowledge, that view has been discredited. How would someone get Lyme in the brain/nervous system if not through the blood? Is there a little strainer or sieve that keeps the bacteria out of the brain, and it just doesn't function in some people? Do people who get 'Lyme brain' get it only if the ticks bite your brain?
Of course not. Lyme is called the 'new great imitator', as syphilis used to be called the 'great imitator' of other diseases. Lyme manifests itself in many ways, and in different ways in different people. Some get it worse in the joints, some worse in the brain, etc., which is part of what makes diagnosis so difficult. The early Lyme researchers were rheumatologists and neurologists, so their standards for diagnosing Lyme depended on finding problems in the part of the body in which they each specialized -- the rheumatologists looked for swollen knees, and if you didn't have swollen knees, then you did not, COULD not, have Lyme. Well, my knees never swelled up, but I have a documented case of Lyme, and so do many other people. Therefore just because you do not have a particular symptom often shown by others does not mean that you do not have Lyme or that Lyme is not lying quietly in your brain, or looking to do so.
(Like syphilis, much of the damage done to the brain by Lyme can perhaps take place later in life. I wonder why there are so many elderly with dementia these days ... I knew many elderly people when I was young, had great grandparents who lived into their 80s and 90s, and only one of them was 'demented' -- she had a stroke when in her 40s and was not quite right in the head after that. Where does the current epidemic of Alzheimers come from? I don't know, but I do wonder ....)
Another point: a different spirochetal bacterium (not the one that causes Lyme) causes syphilis. One gets a sore at the point of entry into the skin, often the genitals, and then eventually, if untreated, the infection moves into the brain via the bloodstream. It is not logical that one spirochete can move from entry site to blood to brain, but another cannot. Can Lyme be transmitted by semen? I have seen little written on that topic, but the answer is at least 'maybe.' Others here may have more data.
And on a final point, 10 days of antibiotics sounds very short from what I understand. Why take the chance?
If you have not read Burrascano's guidelines on ILADS [dot] org, PLEASE do so, and please consider asking your MD to do so -- she sounds kindly and helpful, and so perhaps simply unfamiliar with cutting-edge medicine in regard to Lyme.
I am sorry to bring up all this possible bad news, but you are so recently infected that you stand a VERY good chance of a complete and quick cure if treated properly NOW.
Others here will have suggestions and advice also. Best wishes to you for a fast and full recovery!
Just got back from the doc, I've been put on antibiotics for 10 days. Confirmed that it was lyme, thankfully I was very early at detecting it, the red "bulls eye" rash is not very red at all so I'm relieved compared to last time. I'm going back on the 29th (in10 days) and we'll see where it goes from there. I'm surely going to get another blood test in a months time just to be able to put my mind at ease. Although the blood tests aren't 100% accurate...
The MD said the type of lyme I have is the "skin version" (Directly translated from Swedish, probably has some more advanced name in latin that the U.S. MD's use) She said it can't go in to the central nervous system (Awesome) but then again, she was not an "LLMD" so I can't help but question her experience/knowledge of Lyme.
I told her I did quite a lot of research on my own and even made this thread, she replied that It's important to have a critical point of view on lyme disease, It's at times brought out of proportion and theres a lot of speculation when it comes to MD's and their "own medical studies" with manipulation of statistics etc. etc.
All I know is that I want to be cured...permanently..I don't want this neurological bacteria to evade blood tests and then in 10 years time end up with numerous problems. And I'm prepared to do anything to make sure that doesn't happen, even if that means a year of antibiotics, so be it.
By the way I've read about chronic Lyme disease, but only cases of women spreading it on to their infants. Will sperm also spread Lyme?
Thanks again all of you at medhelp.org <3
The MD said the type of lyme I have is the "skin version" (Directly translated from Swedish, probably has some more advanced name in latin that the U.S. MD's use) She said it can't go in to the central nervous system (Awesome) but then again, she was not an "LLMD" so I can't help but question her experience/knowledge of Lyme.
I told her I did quite a lot of research on my own and even made this thread, she replied that It's important to have a critical point of view on lyme disease, It's at times brought out of proportion and theres a lot of speculation when it comes to MD's and their "own medical studies" with manipulation of statistics etc. etc.
All I know is that I want to be cured...permanently..I don't want this neurological bacteria to evade blood tests and then in 10 years time end up with numerous problems. And I'm prepared to do anything to make sure that doesn't happen, even if that means a year of antibiotics, so be it.
By the way I've read about chronic Lyme disease, but only cases of women spreading it on to their infants. Will sperm also spread Lyme?
Thanks again all of you at medhelp.org <3
From casual reading I have done online, Germany seems to be approaching Lyme in a somewhat different fashion from even the progressive US MDs, so you may find different thinking in Europe. If you read German, you will be able to search the medical literature. I remember that there was a big meeting in Germany about a year ago of European and US LLMDs, and so I know there is interest in Europe.
I just googled "ilads treatment guidelines" and the first result takes you straight to the 13 page document. I would recommend that you read it before your appointment tomorrow, so that you are well grounded in the thinking from the progressive MDs in the US. The US government and mainstream US medicine take the 'Oh it's not a big deal' approach, while ILADS is more broadminded.
The ILADS Guidelines also discuss briefly the other co-infections: Babesia (named after its Hungarian discoverer), Bartonella and Ehrlichia. There are sub-types of some of these as well, which go by slightly different names, but those are the main classifications. They are all different and respond to different treatments. (I first had B. burgdorferi [=Lyme disease] and Babesiosis; then I got another tick bite and got an Ehrlichia infection. The fun never ends.)
Also, if you want to read about the persistent nature of Lyme bacteria, google "journal neuroinflammation lyme" and the first hit in the search will take you to a 2008 article entitled "Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis." It was written by scientists from the US, Switzerland and Canada. The article discusses the ability of B. burgdorferi to hide in the body and evade the body's immune response, thus producing persistent infection not easily eradicated. This line of thinking seems to me to contradict entirely the position that Lyme is a brief little disease that goes away quickly. You might also take that article to your MD and see what reaction you get. The MDs I took the article to (not my Lyme MD) were not interested in the information. Typical response, unfortunately.
I just googled "ilads treatment guidelines" and the first result takes you straight to the 13 page document. I would recommend that you read it before your appointment tomorrow, so that you are well grounded in the thinking from the progressive MDs in the US. The US government and mainstream US medicine take the 'Oh it's not a big deal' approach, while ILADS is more broadminded.
The ILADS Guidelines also discuss briefly the other co-infections: Babesia (named after its Hungarian discoverer), Bartonella and Ehrlichia. There are sub-types of some of these as well, which go by slightly different names, but those are the main classifications. They are all different and respond to different treatments. (I first had B. burgdorferi [=Lyme disease] and Babesiosis; then I got another tick bite and got an Ehrlichia infection. The fun never ends.)
Also, if you want to read about the persistent nature of Lyme bacteria, google "journal neuroinflammation lyme" and the first hit in the search will take you to a 2008 article entitled "Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis." It was written by scientists from the US, Switzerland and Canada. The article discusses the ability of B. burgdorferi to hide in the body and evade the body's immune response, thus producing persistent infection not easily eradicated. This line of thinking seems to me to contradict entirely the position that Lyme is a brief little disease that goes away quickly. You might also take that article to your MD and see what reaction you get. The MDs I took the article to (not my Lyme MD) were not interested in the information. Typical response, unfortunately.
Thank you for that very informative reply. Yes I do live in Sweden. I'm going to see what the doc says tomorrow, I'm also going to be very straight forward and ask questions to see what he/she does/doesn't know about lyme. I've been looking at a lot of videos and reading some sites today, (Thanks for the tips LFlower) Lyme does seem to be bigger over there in the states, it hasnt gotten much media attention here in Sweden. The fact that the last doctor I visited didn't inform me at all about lyme and the risks that are starting to get more and more plausible to occur in my life, really feels awful, I mean that I should have to get myself informed, which thankfully I did!...All I know is that if I was a MD I'd inform my patients a bit about lyme instead of just saying "yeah you got lyme, take these antibiotics for 10 days and come back if the red rash isn't gone when your done" -__-
By the way, JackieCalifornia, do you happen to know any names of these "other diseases" that I should also be checked out for?
Thanks again for the helpful replies =]
By the way, JackieCalifornia, do you happen to know any names of these "other diseases" that I should also be checked out for?
Thanks again for the helpful replies =]
Take some photos of the bite location, and if it's changing from day to day, take one each day. A cell phone photo is probably enough if that's all you've got. I find MDs pay more attention when they can SEE what I was seeing, and that may have faded in the days it took to get an appointment. Even if the first MD you see doesn't take it seriously, the next one you see may, so don't delete the photos.
Are you in Sweden now? There are different strains of Lyme in Europe than here, but there is some crossover. I do not know if the US tests are used in the UK or Europe, and if the US tests would detect European/UK Lyme.
There are also other tick diseases that are often carried by the same tick that brings Lyme, so being tested for those (depending on symptoms) is something a Lyme MD would probably do.
It is said to be easier to cure Lyme and the co-infections if treated quickly, but late treatment does not necessarily mean treatment failure. There are plenty of people who post here who were diagnosed late or treated incompletely the first time, and tho it may take a bit of effort, a cure does seem entirely possible. There are people whose immune systems do not seem to handle Lyme+ easily, and there are those who do ... there is much that is unknown.
Finding an MD who takes a broad view of Lyme+ is the first and most important thing to do. In the US, they are often called "LLMDs" as a short way to say an MD who does not have a narrow view. It stands for 'Lyme Literate MD.'
Many of us here have been through neurologists, rheumatologists, internists, infectious disease MDs, etc., and unless the particular MD has an interest in something other than Lyme as a brief and easily cured infection, it is difficult to be taken seriously. Therefore the inclination and broadmindedness of the MD is more important than whether they are a particular specialty...Lyme is an acquired understanding.
Your rash may or may not be Lyme, but getting it checked out is a good thing to do. Remember that Lyme is a *clinical* diagnosis (that is, based on your symptoms) supported by lab work. The tests are not 100% accurate (for all kinds of good reasons), so it takes an MD who is willing to look at you as a whole to get a good evaluation.
Don't panic, and don't jump to conclusions about what you have or don't. People with Lyme can be very bad off and still, with treatment, recover. You will have to educate yourself to be able to track whether your MD is being open-minded about your diagnosis. The ILADS dot org website is a good place to start, and it includes Dr Burrascano's treatment guidelines for your reading list.
I am not medically trained, and you cannot rely on me for medical advice. I don't know that anyone here is medically trained, but it is helpful and reassuring to know that there are those who do understand what you are grappling with.
Remember: stay calm, get educated, find an LLMD you can work with. Let us know how you do.
Are you in Sweden now? There are different strains of Lyme in Europe than here, but there is some crossover. I do not know if the US tests are used in the UK or Europe, and if the US tests would detect European/UK Lyme.
There are also other tick diseases that are often carried by the same tick that brings Lyme, so being tested for those (depending on symptoms) is something a Lyme MD would probably do.
It is said to be easier to cure Lyme and the co-infections if treated quickly, but late treatment does not necessarily mean treatment failure. There are plenty of people who post here who were diagnosed late or treated incompletely the first time, and tho it may take a bit of effort, a cure does seem entirely possible. There are people whose immune systems do not seem to handle Lyme+ easily, and there are those who do ... there is much that is unknown.
Finding an MD who takes a broad view of Lyme+ is the first and most important thing to do. In the US, they are often called "LLMDs" as a short way to say an MD who does not have a narrow view. It stands for 'Lyme Literate MD.'
Many of us here have been through neurologists, rheumatologists, internists, infectious disease MDs, etc., and unless the particular MD has an interest in something other than Lyme as a brief and easily cured infection, it is difficult to be taken seriously. Therefore the inclination and broadmindedness of the MD is more important than whether they are a particular specialty...Lyme is an acquired understanding.
Your rash may or may not be Lyme, but getting it checked out is a good thing to do. Remember that Lyme is a *clinical* diagnosis (that is, based on your symptoms) supported by lab work. The tests are not 100% accurate (for all kinds of good reasons), so it takes an MD who is willing to look at you as a whole to get a good evaluation.
Don't panic, and don't jump to conclusions about what you have or don't. People with Lyme can be very bad off and still, with treatment, recover. You will have to educate yourself to be able to track whether your MD is being open-minded about your diagnosis. The ILADS dot org website is a good place to start, and it includes Dr Burrascano's treatment guidelines for your reading list.
I am not medically trained, and you cannot rely on me for medical advice. I don't know that anyone here is medically trained, but it is helpful and reassuring to know that there are those who do understand what you are grappling with.
Remember: stay calm, get educated, find an LLMD you can work with. Let us know how you do.
Update: Day 2 = The red area has gotten larger and the blood/flesh underneath is getting harder. I remember this happening before when I had it. I wanted to get a doctor today but was unable to get a time to see a doctor, it was fully booked apparently (This was at 2:30 PM, *SIGH*) so I'm going there early in the morning tomorrow instead in order to get a blood test, although now I'm about 100% sure It's lyme.
But regarding your reply!! Does this mean I've still had lyme this whole time and it could take up to a year of using antibiotics to get rid of it? Will it ever go away fully? I did not know much about this lyme disease when I was diagnosed, now I'm starting to get really worried! I've read and even know a friends friend that ended up paralyzed in the left side of his body after been diagnosed with lyme.
But regarding your reply!! Does this mean I've still had lyme this whole time and it could take up to a year of using antibiotics to get rid of it? Will it ever go away fully? I did not know much about this lyme disease when I was diagnosed, now I'm starting to get really worried! I've read and even know a friends friend that ended up paralyzed in the left side of his body after been diagnosed with lyme.
Probably it is the same in Sweden as in the US. You may have to pay out of pocket or have special insurance outside of national health care to get treated with longer antibiiotics. The standard regimen of care is only a few weeks of antibiotics. But people with lyme find that that is not enough. You are so lucky to be taking care of this now rather than years down the road. My advise is get your self back on antibiotics. Find a doctor that specializes in lyme. It may take three months, a year, or off and on indefinately depending on your "spirochete load" and your immunity.
Look for Burroscano's guidlines 2008, read "Cure Unknown" and see "Under Our Skin".
Good luck.
Look for Burroscano's guidlines 2008, read "Cure Unknown" and see "Under Our Skin".
Good luck.
Thanks for the quick reply, and no they didn't call me in for a blood test afterwards! And they certaintly didn't tell me it could lay dormit. Do you know if these re occuring rashes are a sign of the lyme going active, or are they just rashes that'll go away again on its own?
I suppose it wouldn't be a bad idea to get a blood test then, thank you very much for your advice. And for the record, lyme *****! and so do Swedish doctors =[
I suppose it wouldn't be a bad idea to get a blood test then, thank you very much for your advice. And for the record, lyme *****! and so do Swedish doctors =[
Hey ( not an expert opinion here but have an opinion! lol) When you were diagnosed the first time when you were done with the antibiotics did they test you again for lyme and make sure it was all gone?
From what I learned Lyme can lay dormit for a very long time some people dont have symptoms for years and years or the symptoms are soo little they dont even notice them and then one day they all just start.
I also learned some patients do get re occuring rashes read that in a lyme book.
Thats all i can tell ya tho sorry... There will be more people around to answer you for sure! Good Luck and I would just get another blood test to make sure it is totaly gone. Never hurts to double check and will put your mind at ease!
From what I learned Lyme can lay dormit for a very long time some people dont have symptoms for years and years or the symptoms are soo little they dont even notice them and then one day they all just start.
I also learned some patients do get re occuring rashes read that in a lyme book.
Thats all i can tell ya tho sorry... There will be more people around to answer you for sure! Good Luck and I would just get another blood test to make sure it is totaly gone. Never hurts to double check and will put your mind at ease!
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