Aa
Can I have your help please?
I could really do with some advice and guidance if anyone can spare a few minutes. I have just realised, by seeing pictures of a lyme rash on a video about hiking on youtube I was watching, that the bullseye rash that I got a year ago from a bite, was probably actually Lyme Disease. Shocked to say the least! I have a few questions if anyone can help, cause I have made an appointment with my doctor next week but not very confident he will know a lot about it. I suppose it's not that common in the UK, which is where I am based. The affected area got quite bad and I felt a bit sick at the time, but as it started getting better after a few days I didn't go to the doctor, as I just thought it was a bite of some sort from camping. I wish I had have now!
1) If you get the classic red circle rash does that mean you definitely contracted Lyme Disease?
2) If this was nearly a year ago, what treatment should the doctor put me under now at this stage? I have read different things from a week or two of antibiotics will sort it, to having weeks and weeks on tablets and IV medicine!
3) I have been in and out of hospital the last few months with heart problems, and have actually been diagnosed with POTs, which I have now read on the internet, can be triggered by Lyme Disease! I have other symptoms too which I am now questioning if they are linked to LD.
I can't believe I may have contracted Lyme Disease a year ago. Still in shock. But trying to get all the info (from people who know!) so I can go armed to my doctor. Many thanks.
1) If you get the classic red circle rash does that mean you definitely contracted Lyme Disease?
2) If this was nearly a year ago, what treatment should the doctor put me under now at this stage? I have read different things from a week or two of antibiotics will sort it, to having weeks and weeks on tablets and IV medicine!
3) I have been in and out of hospital the last few months with heart problems, and have actually been diagnosed with POTs, which I have now read on the internet, can be triggered by Lyme Disease! I have other symptoms too which I am now questioning if they are linked to LD.
I can't believe I may have contracted Lyme Disease a year ago. Still in shock. But trying to get all the info (from people who know!) so I can go armed to my doctor. Many thanks.
Welcome to MedHelp Lyme --
You are asking good questions, and keep on doing that until you are fully satisfied that your MDs have satisfied your inquiries and you feel well again. There is a split in the medical community: the more traditional view of Lyme is that it is rare, hard to get, and easy to cure with a few weeks of doxycycline.
Over time, however, more research has shown that Lyme is more persistent than previously thought, and the medications used early on are effective only if given almost immediately after the bite. Many of us do not know when we were bitten, and it is entirely possible to be bitten more than once. Not all of us get the famous red 'bullseye'-shaped circular rash, but the MDs who studied Lyme early on assumed that the rash *always* happens, and anyone without a rash does not have Lyme: full stop.
More recent research shows that many of us never saw a tick on us and never had a rash, whether circular or otherwise. In addition, the usual tests (called Western blot and ELISA) are far from perfect: if these tests are positive for Lyme, then they are reliable, but if if the tests are negative, they could well be wrong. Why? because the Lyme bacteria are able to suppress the human immune system, and the Western blot and ELISA tests rely on strong positive results from the immune system. Result: it is very possible to have Lyme but have negative Western blot and ELISA tests.
A significant portion of the medical community still rely on Western blot and ELISA, and as a result, many true Lyme infections are overlooked or ignored. Another kind of test, offered by IGeneX Labs, does not rely on the immune system reaction, but instead looks in your blood for bits of the bacteria's DNA -- a direct test. The IGeneX test is called 'PCR', short for polymerase chain reaction -- you might see that in things you read.
Unfortunately, many MDs do not understand the flaws in the Western blot and ELISA tests, and so do not use the far more precise PCR tests. Result: it is possible to have Lyme under the W.blot and ELISA tests, but you are told that you do not have Lyme.
You ask very good questions:
-- "If you get the classic red circle rash does that mean you definitely contracted Lyme Disease?" I suppose there could be a similar rash from another kind of bite, but I would want to be sure that it was *not* Lyme and just assume that it is something else. Lyme will not go away by itself.
-- "If this was nearly a year ago, what treatment should the doctor put me under now at this stage?" It is, to my understanding, never too late to treat for Lyme. Antibiotics are the usual treatment, and that is how I was treated. Different MDs use different kinds of antibiotics, but some common treatments (such as only doxycycline for a few weeks) are often not effective unless the treatment began almost immediately after the bite (and many of us do not know when we were bitten, or if there were previous bites unnoticed). If you are later in the infection, the doxycycline may well not work, because the Lyme bacteria create slimy shields in the body called 'bio-films' where the immune system cannot see or reach them. Doxy cannot readily pierce the bio-films, and other antibiotics are needed. MDs who are not true Lyme specialists may not undertstand or believe in this view.
You say: "I have read different things from a week or two of antibiotics will sort it, to having weeks and weeks on tablets and IV medicine!" All of these are true, and which approach is needed depends on how far into the infection you are and which other infections the ticks were carrying other than Lyme.
You say: "3) I have been in and out of hospital the last few months with heart problems, and have actually been diagnosed with POTs, which I have now read on the internet, can be triggered by Lyme Disease! I have other symptoms too which I am now questioning if they are linked to LD." To my understanding, this is all true, but MDs who are not truly Lyme specialists do not believe these aspects of Lyme.
You say: "I have just realised, by seeing pictures of a lyme rash on a video about hiking on youtube I was watching, that the bullseye rash that I got a year ago from a bite, was probably actually Lyme Disease. Shocked to say the least!" Too true.
You say: "I ... have a few questions if anyone can help, cause I have made an appointment with my doctor next week but not very confident he will know a lot about it." This is not unusual. There is a serious split in the medical community about how serious Lyme is or is not and about how to test, diagnose and treat it. Finding a Lyme specialist who takes an aggressive approach to diagnosis and treatment is preferable imo.
You say: "It's not that common in the UK, which is where I am based." This same thing is said over and over in the US, and while it may once have been correct, Lyme has spread rapidly in many places, but the MDs have not taken it seriously.
You say: "The affected area got quite bad and I felt a bit sick at the time, but as it started getting better after a few days I didn't go to the doctor." Lyme is in the same bacterial family as syphilis, which is a very serious disease -- and all MDs agree on that. Syphilis also goes through an acute early phase and then settles down in the body to work its mischief over time. This is true of Lyme as well.
You say: "1) If you get the classic red circle rash does that mean you definitely contracted Lyme Disease?" I personally would assume that it means I have Lyme until reliable tests (such as the IGeneX PCR testing) prove otherwise.
You say: "2) If this was nearly a year ago, what treatment should the doctor put me under now at this stage? I have read different things from a week or two of antibiotics will sort it, to having weeks and weeks on tablets and IV medicine!" It is not too late to treat, but simple antibiotics for a short time will not pierce the biofilms where the Lyme bacteria hide, and it is also true that the Lyme bacteria have a very slow reproductive cycle, so that two weeks of doxycycline antibiotics will be insufficient for reasons both of piercing the biofilms and encountering enough generations of the bacteria to kill them all.
You say: "3) I have been in and out of hospital the last few months with heart problems, and have actually been diagnosed with POTs, which I have now read on the internet, can be triggered by Lyme Disease! I have other symptoms too which I am now questioning if they are linked to LD." These are good observations, and I would see a Lyme specialist. Lyme can definitely affect the heart, and I believe that a close family member of mine had Lyme and died of heart failure as a result. No MD thought to test her for it.
You say: "I can't believe I may have contracted Lyme Disease a year ago. Still in shock." It took me about a year to finally have a diagnosis too. The sooner treatment is begun, the better, before serious damage is done -- but to my understanding, it is not too late to treat even after quite a while.
You say: "But trying to get all the info (from people who know!) so I can go armed to my doctor. Many thanks." You are asking very good questions -- and if the MD you see does not take your concerns seriously, then find another MD and try again. Always get full copies of ALL your test results, because what looks negative or unimportant to an MD who does not 'believe' in Lyme can say much more to a Lyme specialist.
ILADS (the International Lyme and Associated Diseases Society) has a referral function on its website, and they may be able to give you names of ILADS-member Lyme specialists even in England.
Let us know how you do -- Lyme can be beaten, and the earlier, the better. Best wishes!
You are asking good questions, and keep on doing that until you are fully satisfied that your MDs have satisfied your inquiries and you feel well again. There is a split in the medical community: the more traditional view of Lyme is that it is rare, hard to get, and easy to cure with a few weeks of doxycycline.
Over time, however, more research has shown that Lyme is more persistent than previously thought, and the medications used early on are effective only if given almost immediately after the bite. Many of us do not know when we were bitten, and it is entirely possible to be bitten more than once. Not all of us get the famous red 'bullseye'-shaped circular rash, but the MDs who studied Lyme early on assumed that the rash *always* happens, and anyone without a rash does not have Lyme: full stop.
More recent research shows that many of us never saw a tick on us and never had a rash, whether circular or otherwise. In addition, the usual tests (called Western blot and ELISA) are far from perfect: if these tests are positive for Lyme, then they are reliable, but if if the tests are negative, they could well be wrong. Why? because the Lyme bacteria are able to suppress the human immune system, and the Western blot and ELISA tests rely on strong positive results from the immune system. Result: it is very possible to have Lyme but have negative Western blot and ELISA tests.
A significant portion of the medical community still rely on Western blot and ELISA, and as a result, many true Lyme infections are overlooked or ignored. Another kind of test, offered by IGeneX Labs, does not rely on the immune system reaction, but instead looks in your blood for bits of the bacteria's DNA -- a direct test. The IGeneX test is called 'PCR', short for polymerase chain reaction -- you might see that in things you read.
Unfortunately, many MDs do not understand the flaws in the Western blot and ELISA tests, and so do not use the far more precise PCR tests. Result: it is possible to have Lyme under the W.blot and ELISA tests, but you are told that you do not have Lyme.
You ask very good questions:
-- "If you get the classic red circle rash does that mean you definitely contracted Lyme Disease?" I suppose there could be a similar rash from another kind of bite, but I would want to be sure that it was *not* Lyme and just assume that it is something else. Lyme will not go away by itself.
-- "If this was nearly a year ago, what treatment should the doctor put me under now at this stage?" It is, to my understanding, never too late to treat for Lyme. Antibiotics are the usual treatment, and that is how I was treated. Different MDs use different kinds of antibiotics, but some common treatments (such as only doxycycline for a few weeks) are often not effective unless the treatment began almost immediately after the bite (and many of us do not know when we were bitten, or if there were previous bites unnoticed). If you are later in the infection, the doxycycline may well not work, because the Lyme bacteria create slimy shields in the body called 'bio-films' where the immune system cannot see or reach them. Doxy cannot readily pierce the bio-films, and other antibiotics are needed. MDs who are not true Lyme specialists may not undertstand or believe in this view.
You say: "I have read different things from a week or two of antibiotics will sort it, to having weeks and weeks on tablets and IV medicine!" All of these are true, and which approach is needed depends on how far into the infection you are and which other infections the ticks were carrying other than Lyme.
You say: "3) I have been in and out of hospital the last few months with heart problems, and have actually been diagnosed with POTs, which I have now read on the internet, can be triggered by Lyme Disease! I have other symptoms too which I am now questioning if they are linked to LD." To my understanding, this is all true, but MDs who are not truly Lyme specialists do not believe these aspects of Lyme.
You say: "I have just realised, by seeing pictures of a lyme rash on a video about hiking on youtube I was watching, that the bullseye rash that I got a year ago from a bite, was probably actually Lyme Disease. Shocked to say the least!" Too true.
You say: "I ... have a few questions if anyone can help, cause I have made an appointment with my doctor next week but not very confident he will know a lot about it." This is not unusual. There is a serious split in the medical community about how serious Lyme is or is not and about how to test, diagnose and treat it. Finding a Lyme specialist who takes an aggressive approach to diagnosis and treatment is preferable imo.
You say: "It's not that common in the UK, which is where I am based." This same thing is said over and over in the US, and while it may once have been correct, Lyme has spread rapidly in many places, but the MDs have not taken it seriously.
You say: "The affected area got quite bad and I felt a bit sick at the time, but as it started getting better after a few days I didn't go to the doctor." Lyme is in the same bacterial family as syphilis, which is a very serious disease -- and all MDs agree on that. Syphilis also goes through an acute early phase and then settles down in the body to work its mischief over time. This is true of Lyme as well.
You say: "1) If you get the classic red circle rash does that mean you definitely contracted Lyme Disease?" I personally would assume that it means I have Lyme until reliable tests (such as the IGeneX PCR testing) prove otherwise.
You say: "2) If this was nearly a year ago, what treatment should the doctor put me under now at this stage? I have read different things from a week or two of antibiotics will sort it, to having weeks and weeks on tablets and IV medicine!" It is not too late to treat, but simple antibiotics for a short time will not pierce the biofilms where the Lyme bacteria hide, and it is also true that the Lyme bacteria have a very slow reproductive cycle, so that two weeks of doxycycline antibiotics will be insufficient for reasons both of piercing the biofilms and encountering enough generations of the bacteria to kill them all.
You say: "3) I have been in and out of hospital the last few months with heart problems, and have actually been diagnosed with POTs, which I have now read on the internet, can be triggered by Lyme Disease! I have other symptoms too which I am now questioning if they are linked to LD." These are good observations, and I would see a Lyme specialist. Lyme can definitely affect the heart, and I believe that a close family member of mine had Lyme and died of heart failure as a result. No MD thought to test her for it.
You say: "I can't believe I may have contracted Lyme Disease a year ago. Still in shock." It took me about a year to finally have a diagnosis too. The sooner treatment is begun, the better, before serious damage is done -- but to my understanding, it is not too late to treat even after quite a while.
You say: "But trying to get all the info (from people who know!) so I can go armed to my doctor. Many thanks." You are asking very good questions -- and if the MD you see does not take your concerns seriously, then find another MD and try again. Always get full copies of ALL your test results, because what looks negative or unimportant to an MD who does not 'believe' in Lyme can say much more to a Lyme specialist.
ILADS (the International Lyme and Associated Diseases Society) has a referral function on its website, and they may be able to give you names of ILADS-member Lyme specialists even in England.
Let us know how you do -- Lyme can be beaten, and the earlier, the better. Best wishes!
Welcome to MedHelp Lyme -- we are glad to share our experiences and thoughts with you. You are in the UK, yes? If you would share with us generally what area of the UK ("near Leeds" etc.), that could help us locate some possible sources familiar with Lyme diagnosis and treatment.
More to come! And welcome again.
More to come! And welcome again.
Please forgive my brief response but I am not feeling very well. Jackie will jump in hopefully and give you more details. One of my first symptoms was POTS. I now know it was brought on by Lyme. If I were you, I would start treating now by finding an LLMD. The longer you wait, the worse things get. Take it from me, I went 25 years misdiagnosed and now I am having a really rough time. Everyone is different but if you were bit a year ago, several months to a year of antibiotics is not unusual. I am now on a natural protocol.
Wishing you luck.
Wishing you luck.
Oh and what tests should be done to confirm if I have it or not? Again, I have read different things....a blood test is one option although apparently only specialist labs can do it, and again, not sure we will have this where I live. And then others say if you have the rash, then you definitely have it and don't need a test. But I have also read, that if you get LD, then there is a good chance you have another infection too from the bite. Sorry for all the questions!!!
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