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Chances of Lyme?
Hello, I believe I caught Lyme and co-infections from a friend just over a month ago. On November 23rd, 2013.
Can someone comment, what are the chances of catching it from a casual encounter? I met an old time friend who has been diagnosed with Lyme by igenex. She has NOT been treated in any way and potentially maybe infectious. We just hugged when we met and left were the only times we touched. But she did tear when we were eating supper together at a restaurant and wiped it with her fingers. I showed her my phone after like 5 mins later (a picture) and she touched that. I took my phone back. After I touched my lips so I believe it may have been absorbed through there. We had absolutely no mushy contact at all like kissing or sexual. In fact there was no skin contact even ever. Just clothes to clothes with the hug. She did sneeze 3 times in the evening as well but on her sleeve.
I have had unusual profound symptoms for the past month straight. I don't want to mention my symptoms yet, I just want really like if people can tell me the possibility of contracting it like that? Thanks so much I really appreciate anyone's input and opinion and experience on this matter.
Can someone comment, what are the chances of catching it from a casual encounter? I met an old time friend who has been diagnosed with Lyme by igenex. She has NOT been treated in any way and potentially maybe infectious. We just hugged when we met and left were the only times we touched. But she did tear when we were eating supper together at a restaurant and wiped it with her fingers. I showed her my phone after like 5 mins later (a picture) and she touched that. I took my phone back. After I touched my lips so I believe it may have been absorbed through there. We had absolutely no mushy contact at all like kissing or sexual. In fact there was no skin contact even ever. Just clothes to clothes with the hug. She did sneeze 3 times in the evening as well but on her sleeve.
I have had unusual profound symptoms for the past month straight. I don't want to mention my symptoms yet, I just want really like if people can tell me the possibility of contracting it like that? Thanks so much I really appreciate anyone's input and opinion and experience on this matter.
http://rense.com/general94/provenlym.htm
I'm still certain there was no tick bite or insect bite. I also know this person has been diagnosed and untreated for Lyme disease.
I'm just saying other spirochetes can be transferred person to person, what makes Lyme disease unable to spread? This person has lyme diagnosed and was untreated for some time. I have been doing lots of reading. And there are other people who claim it has happened out there. Something like sexual transmission or placental transmission is more likely though. I'm just saying it has happened and I am also saying it happened to me.
Also Bartonella and Mycoplasma are probably more infectious from person to person than lyme is. Babesia is probably the least likely to be transferred in these situations as I believe it likes to stay in the blood where red blood cells are.
I'm still certain there was no tick bite or insect bite. I also know this person has been diagnosed and untreated for Lyme disease.
I'm just saying other spirochetes can be transferred person to person, what makes Lyme disease unable to spread? This person has lyme diagnosed and was untreated for some time. I have been doing lots of reading. And there are other people who claim it has happened out there. Something like sexual transmission or placental transmission is more likely though. I'm just saying it has happened and I am also saying it happened to me.
Also Bartonella and Mycoplasma are probably more infectious from person to person than lyme is. Babesia is probably the least likely to be transferred in these situations as I believe it likes to stay in the blood where red blood cells are.
Thanks for the tip, it makes me feel like I have a chance.
I have actually been taking 200 mg minocycline every day since 3 days after my infection and it still hasn't treated it.
I added the banderol/samento 30 drops each twice daily 1 month post infection and that worked really well. Got the lyme under control.
Then 2 months post infection added in 600 mg daily of rifampin to the minocycline and banderold and samento. Practically instant relief of the Bartonella symptoms with the rifampin! That resolved my insomnia/anxiety/burning nerves
Tomorrow I switch the rifampin to bactrim for Bartonella and I am adding in tinidazole which I hope knocks the lyme out. I will keep taking minocycline 200 mg daily. I know the tinidazole kills cysts, cleans up lyme biofilm, treats intracellular lyme, and has great tissue penetration. It even hits the spirochetes. So keeping my fingers crossed on this one.
Yes I hear I need to be on the meds at least 2 or 3 months from the day of my last symptom. I plan on doing that.
I have actually been taking 200 mg minocycline every day since 3 days after my infection and it still hasn't treated it.
I added the banderol/samento 30 drops each twice daily 1 month post infection and that worked really well. Got the lyme under control.
Then 2 months post infection added in 600 mg daily of rifampin to the minocycline and banderold and samento. Practically instant relief of the Bartonella symptoms with the rifampin! That resolved my insomnia/anxiety/burning nerves
Tomorrow I switch the rifampin to bactrim for Bartonella and I am adding in tinidazole which I hope knocks the lyme out. I will keep taking minocycline 200 mg daily. I know the tinidazole kills cysts, cleans up lyme biofilm, treats intracellular lyme, and has great tissue penetration. It even hits the spirochetes. So keeping my fingers crossed on this one.
Yes I hear I need to be on the meds at least 2 or 3 months from the day of my last symptom. I plan on doing that.
I'm glad you got your diagnosis. And I'm not surprised about the Bartonella.
I believe that a Lyme infection that's only 3 months old can still be handled with Doxycycline, but you'd probably need several months worth. In spite of your belief about when you got it, a surprising number of people carry Lyme around in their bodies for years without knowing they have it. You still could have had it longer, and a more recent infection of Bart or Mycoplasma could have triggered it. Longer infection means longer treatment.
Having coinfections lengthens the treatment, too. Whatever you take, you'll need to stay on the meds until all symptoms are completely gone for a couple months. Otherwise, there's a good chance of relapse.
It sounds like you're on the right track!
I believe that a Lyme infection that's only 3 months old can still be handled with Doxycycline, but you'd probably need several months worth. In spite of your belief about when you got it, a surprising number of people carry Lyme around in their bodies for years without knowing they have it. You still could have had it longer, and a more recent infection of Bart or Mycoplasma could have triggered it. Longer infection means longer treatment.
Having coinfections lengthens the treatment, too. Whatever you take, you'll need to stay on the meds until all symptoms are completely gone for a couple months. Otherwise, there's a good chance of relapse.
It sounds like you're on the right track!
"1 LLMD made the point of saying 50% of people with Lyme do not recall a tick bite or bulls-eye rash."
What that llmd meant is that some tick bites aren't felt. Nymphal ticks especially because they're so tiny are very often not felt-----and they are the ones most likely to pass on Lyme. They've also been found to have a much higher rate of having the bacteria in them.
Some people don't even feel adult tick bites.
So it's entirely possible that you were bitten and didn't know it and also didn't have any symptoms. Many people have Lyme and never have any symptoms---- it's called asymptomatic Lyme and I wish I'd gotten that kind.
As I said, you have the right to believe what you believe and I'm not trying to talk you out of that belief but other members need to know that science does not back you up.
What that llmd meant is that some tick bites aren't felt. Nymphal ticks especially because they're so tiny are very often not felt-----and they are the ones most likely to pass on Lyme. They've also been found to have a much higher rate of having the bacteria in them.
Some people don't even feel adult tick bites.
So it's entirely possible that you were bitten and didn't know it and also didn't have any symptoms. Many people have Lyme and never have any symptoms---- it's called asymptomatic Lyme and I wish I'd gotten that kind.
As I said, you have the right to believe what you believe and I'm not trying to talk you out of that belief but other members need to know that science does not back you up.
I am 100% certain this is the case. It was accidental exposure of a tear that got onto my phone, and the germs in that tear then got into my mouth. The initial symptoms were in my mouth. There are other people who claim it is in tears as well including Stephen Buhner. I'm not saying Lyme disease is as contagious as the flu or common cold is, but I am saying that it does happen in people that are untreated and therefore more infectious.
I maybe a rare case, but 1 LLMD made the point of saying 50% of people with Lyme do not recall a tick bite or bulls-eye rash. Therefore it was spread in other ways. Another LLND I saw said he had another patient who had a roommate that got bit by a tick and he caught the illness. Also there are new findings saying it is spread sexually as well.
Are there studies done? Probably not and I doubt anyone is going to do a study for this. However they are now being done for sexual transmission. But as far as I'm concerned I'm living proof that it happened. Let's not say that it is impossible. I'm sure if everyone out there didn't put things in their mouth or also washed their hands everytime before they eat they probably wouldn't catch this illness even if they are with someone that has this illness. But again if the person who has Lyme disease is treating, or treated. They are not likely to be infectious. But untreated with a high germ load? I don't think it's right to say it's impossible esspecially when this is my experience that it did happen. I don't want people to think they are safe, I thought I had nothing to worry about and thought it was only spread by tick or insect bites and look what happened to me. Precautions should be made.
Bartonella may even be more potentially infectious as it is saliva and bodily fluids. Mycoplasma maybe passed of in a sneeze.
I maybe a rare case, but 1 LLMD made the point of saying 50% of people with Lyme do not recall a tick bite or bulls-eye rash. Therefore it was spread in other ways. Another LLND I saw said he had another patient who had a roommate that got bit by a tick and he caught the illness. Also there are new findings saying it is spread sexually as well.
Are there studies done? Probably not and I doubt anyone is going to do a study for this. However they are now being done for sexual transmission. But as far as I'm concerned I'm living proof that it happened. Let's not say that it is impossible. I'm sure if everyone out there didn't put things in their mouth or also washed their hands everytime before they eat they probably wouldn't catch this illness even if they are with someone that has this illness. But again if the person who has Lyme disease is treating, or treated. They are not likely to be infectious. But untreated with a high germ load? I don't think it's right to say it's impossible esspecially when this is my experience that it did happen. I don't want people to think they are safe, I thought I had nothing to worry about and thought it was only spread by tick or insect bites and look what happened to me. Precautions should be made.
Bartonella may even be more potentially infectious as it is saliva and bodily fluids. Mycoplasma maybe passed of in a sneeze.
You said "So this method of it being spread in a casual contact really did happen". I have to say, for anyone new reading this thread, that there is no proof, scientifically, that Lyme can be spread by the type of contact you had with your friends (in your first post).
You may continue to believe that---- it's your prerogative. But I hope that newcomers won't believe that.
You may continue to believe that---- it's your prerogative. But I hope that newcomers won't believe that.
Hey all. I just wanted to say... Turns out I did have Lyme. So this method of it being spread in a casual contact really did happen, it's been a bit of a nightmare to say the least.
I got my igenex test, and although it was technically negative, I had 41 a ** which was ++ and 39 and another ** which were IND. so 2 ** were IND. So essentially a "weakly positive result" according to the LLMD.
I also got the lovely co-infections, Bartonella and Mycoplasma. I saw 2 lyme literate doctors and they both said they doubt Babesia. So I will have to keep my fingers crossed on that.
Now treating with rifampin + minocycline.
Does anyone know of a good way to treat lyme that is just 3 months post infection?
I got my igenex test, and although it was technically negative, I had 41 a ** which was ++ and 39 and another ** which were IND. so 2 ** were IND. So essentially a "weakly positive result" according to the LLMD.
I also got the lovely co-infections, Bartonella and Mycoplasma. I saw 2 lyme literate doctors and they both said they doubt Babesia. So I will have to keep my fingers crossed on that.
Now treating with rifampin + minocycline.
Does anyone know of a good way to treat lyme that is just 3 months post infection?
False negatives are fairly common with antibodies. I always had a negative but definitely have Lyme.
A PCR negative only means that that one sample was negative. A next one, if ever done, might well be positive so a negative proves nothing for a PCR.
But a positive is positive---- positively. (grin)
A PCR negative only means that that one sample was negative. A next one, if ever done, might well be positive so a negative proves nothing for a PCR.
But a positive is positive---- positively. (grin)
What are some good treatments that you know of? How about success stories with rifing? How have you been able to treat this?
I got tested for PCR and for antibodies which came back negative that means I did not have this before even. This happened from the method I suggested. I realize it's rare but it happened.
IMPORTANT!
A comment above says: "If you DO find a doctor in Canada it would be great if you would post it here. There are others from Canada who might benefit from that information."
To the contrary, I would ask you NOT to post here the name of any doctors in Canada or anywhere else.
MDs who treat Lyme aggressively and for an extended period of time risk the wrath of the local medical board and authorities, because most medical boards in the US and elsewhere are dominated by MDs who think a few weeks of doxy (regardless of what infections you have) is all you need, and any remaining symptoms are due only to an overactive immune system. Result: incompletely treated Lyme, permanently.
Those medical boards can make life difficult to impossible for docs who treat by ILADS standards, and if those docs are not able to practice according to conscience, there would be many many more people very ill with Lyme and its co-infections.
There are some Lyme specialists who are well known by their own choice, but it is not up to us to 'out' any MD who does not wish to be identified. In the US, some state medical boards have the power to take away the medical license of MDs who treat Lyme aggressively -- and docs have lost their licenses as a result; other states, like California, are more open-minded.
As a rule of thumb, however, we do not post MD's names here, or sometimes refer to the 'famous' one simply as "Dr M recommends ..." and leave it at that, since in a field as small as Lyme medicine, the well known MDs are pretty much known. But that is not excuse to throw their names around in public, given the risks involved to the MDs and to us their patients if the docs lose their medical licenses.
+++++++++++++++++++++++++++++++++++++++++++++++++++++
===>>> To everyone:
Please do NOT post the names of Lyme docs in the open here.
Use the private message board associated with this site if you want to recommend a doc to someone in particular.
+++++++++++++++++++++++++++++++++++++++++++++++++++++
A comment above says: "If you DO find a doctor in Canada it would be great if you would post it here. There are others from Canada who might benefit from that information."
To the contrary, I would ask you NOT to post here the name of any doctors in Canada or anywhere else.
MDs who treat Lyme aggressively and for an extended period of time risk the wrath of the local medical board and authorities, because most medical boards in the US and elsewhere are dominated by MDs who think a few weeks of doxy (regardless of what infections you have) is all you need, and any remaining symptoms are due only to an overactive immune system. Result: incompletely treated Lyme, permanently.
Those medical boards can make life difficult to impossible for docs who treat by ILADS standards, and if those docs are not able to practice according to conscience, there would be many many more people very ill with Lyme and its co-infections.
There are some Lyme specialists who are well known by their own choice, but it is not up to us to 'out' any MD who does not wish to be identified. In the US, some state medical boards have the power to take away the medical license of MDs who treat Lyme aggressively -- and docs have lost their licenses as a result; other states, like California, are more open-minded.
As a rule of thumb, however, we do not post MD's names here, or sometimes refer to the 'famous' one simply as "Dr M recommends ..." and leave it at that, since in a field as small as Lyme medicine, the well known MDs are pretty much known. But that is not excuse to throw their names around in public, given the risks involved to the MDs and to us their patients if the docs lose their medical licenses.
+++++++++++++++++++++++++++++++++++++++++++++++++++++
===>>> To everyone:
Please do NOT post the names of Lyme docs in the open here.
Use the private message board associated with this site if you want to recommend a doc to someone in particular.
+++++++++++++++++++++++++++++++++++++++++++++++++++++
CanLyme has a member's forum a little like this one. I've been a lurker member for a long time but haven't posted there for ages. I do look in on it occasionally and it it seems that many Lyme patients in Canada have to go to the U.S. to get treated for Lyme.
One person said in April of 2013:
"The trouble is that there are no real lyme docs in the country now."
That opinion is repeated over and over throughout the forum. NDs are reported to be helpful but whether they would give long term antibiotics or just supplements to help with some symptoms is up for grabs.
On CanLyme there's a special section for people in Alberta (not in the forum but in the main site)
If you DO find a doctor in Canada it would be great if you would post it here. There are others from Canada who might benefit from that information.
One person said in April of 2013:
"The trouble is that there are no real lyme docs in the country now."
That opinion is repeated over and over throughout the forum. NDs are reported to be helpful but whether they would give long term antibiotics or just supplements to help with some symptoms is up for grabs.
On CanLyme there's a special section for people in Alberta (not in the forum but in the main site)
If you DO find a doctor in Canada it would be great if you would post it here. There are others from Canada who might benefit from that information.
I agree with Jackie. Anxiety, obsessive thoughts, and despair are all signs of Lyme. I've had them, too. They are also signs of Bartonella. It doesn't really matter where you got it (or both), only that you currently have symptoms that need to be addressed.
Please don't fixate on the actions that you think led to this. Regret will only stress you out further, which is the opposite of what you need right now. It is far more likely that you had Lyme or Bartonella in your system already, and an everyday virus or perhaps pure coincidence led it to show itself when it did. What you need is to "work the problem," as Jackie said. Do not give in to a false belief that you're stuck with this for life.
It is well documented that at least half of all Lyme patients never saw a tick or a rash. For a doctor to deny a diagnosis because a patient didn't see a tick is bad medicine indeed. I encourage you not to insist to a doctor that you couldn't possibly have been bit by a tick. It only gives them an excuse to deny you further testing.
When I was sick and learned of Lyme Disease, I was sure I'd never been bit by a tick. I was sure I would have seen one. But eventually, I remembered a time years back when I had a strange little scab on the back of my calf. I thought it was from a small puncture wound that I somehow didn't notice it. It never occured to me it was a bug.
Nymph ticks are very small and are easily mistaken for skin tags, scabs, or even little moles. They can be missed completely when they imbed in the scalp or behind the ear. They can feed and drop off in as little as 8 hours, one night's sleep. (The 24-36 hour requirement to transmit Lyme is based on a small, flawed experiment that used only adult ticks, and didn't wait long enough before testing for transmission.)
However you got it doesn't really matter. What matters is that an infected person get the diagnosis and treatment they need. Be sure to ask your doctor what else could cause your symptoms so you can exclude whatever it's not. You may need testing for other diseases, too.
I am not clear on what kind of testing you've had. An IGeneX Western Blot is very useful, as it usually shows whether or not you have Lyme specific antibodies. (Some people are still be false negative there.)
I encourage you to also get tested for Bartonella at IGeneX. They have a couple tests that are better than most standard labs. I was really sick with it and tested "Not Negative" there, below the standard cutoff for positive at other labs.
Minocycline has been used for Lyme and Bartonella. It is an intracellular antibiotic, but I don't know if it can cure either by itself. Both are hard to kill. It's possible your dose is too low. Acne doses tend to be lower than what's needed for other infections.
And so, pick yourself up, dust yourself off, and decide what your next steps are. Getting to a more sympathetic doctor sounds like an excellent first step. You need further testing. Get to an LLMD in the U.S. if you have to.
Find other Canadians who can offer you suggestions and even names of doctors you could go see. Canadian doctors are restrained by the dictates of the health system, so there's only so much one can do there. But Bartonella is less controversial, even though there is massive ignorance about it.
Don't accept that you're stuck with your symptoms for life. Both infections are treatable. Definitely take some magnesium for the anxiety. It does help. I'm still on it. (Grocery store magnesium oxide is useless. You need Mag citrate, malate, or orotate.) Hang in there!
Please don't fixate on the actions that you think led to this. Regret will only stress you out further, which is the opposite of what you need right now. It is far more likely that you had Lyme or Bartonella in your system already, and an everyday virus or perhaps pure coincidence led it to show itself when it did. What you need is to "work the problem," as Jackie said. Do not give in to a false belief that you're stuck with this for life.
It is well documented that at least half of all Lyme patients never saw a tick or a rash. For a doctor to deny a diagnosis because a patient didn't see a tick is bad medicine indeed. I encourage you not to insist to a doctor that you couldn't possibly have been bit by a tick. It only gives them an excuse to deny you further testing.
When I was sick and learned of Lyme Disease, I was sure I'd never been bit by a tick. I was sure I would have seen one. But eventually, I remembered a time years back when I had a strange little scab on the back of my calf. I thought it was from a small puncture wound that I somehow didn't notice it. It never occured to me it was a bug.
Nymph ticks are very small and are easily mistaken for skin tags, scabs, or even little moles. They can be missed completely when they imbed in the scalp or behind the ear. They can feed and drop off in as little as 8 hours, one night's sleep. (The 24-36 hour requirement to transmit Lyme is based on a small, flawed experiment that used only adult ticks, and didn't wait long enough before testing for transmission.)
However you got it doesn't really matter. What matters is that an infected person get the diagnosis and treatment they need. Be sure to ask your doctor what else could cause your symptoms so you can exclude whatever it's not. You may need testing for other diseases, too.
I am not clear on what kind of testing you've had. An IGeneX Western Blot is very useful, as it usually shows whether or not you have Lyme specific antibodies. (Some people are still be false negative there.)
I encourage you to also get tested for Bartonella at IGeneX. They have a couple tests that are better than most standard labs. I was really sick with it and tested "Not Negative" there, below the standard cutoff for positive at other labs.
Minocycline has been used for Lyme and Bartonella. It is an intracellular antibiotic, but I don't know if it can cure either by itself. Both are hard to kill. It's possible your dose is too low. Acne doses tend to be lower than what's needed for other infections.
And so, pick yourself up, dust yourself off, and decide what your next steps are. Getting to a more sympathetic doctor sounds like an excellent first step. You need further testing. Get to an LLMD in the U.S. if you have to.
Find other Canadians who can offer you suggestions and even names of doctors you could go see. Canadian doctors are restrained by the dictates of the health system, so there's only so much one can do there. But Bartonella is less controversial, even though there is massive ignorance about it.
Don't accept that you're stuck with your symptoms for life. Both infections are treatable. Definitely take some magnesium for the anxiety. It does help. I'm still on it. (Grocery store magnesium oxide is useless. You need Mag citrate, malate, or orotate.) Hang in there!
One more thing:
You say above:
"I have been eating, sleeping, thinking, and reading nothing but Lyme for the past 5 weeks and it is not fun and I realize this is for the rest of my life!"
Wrong. Get an appointment, see the doc, take the treatment, get well, have your life back.
Just do it. And take some magnesium, any variety ending in '-ate', like malate, citrate, etc. Just do it. Mg will help you sleep and relax.
You say above:
"I have been eating, sleeping, thinking, and reading nothing but Lyme for the past 5 weeks and it is not fun and I realize this is for the rest of my life!"
Wrong. Get an appointment, see the doc, take the treatment, get well, have your life back.
Just do it. And take some magnesium, any variety ending in '-ate', like malate, citrate, etc. Just do it. Mg will help you sleep and relax.
Don't be sorry about how you feel! Many people cannot own up to their true feelings, so you are ahead of the game by acknowledging how you feel. Identifying the problem is the first step to fixing it.
And it's NOT you that's having a hard time dealing with Lyme: Lyme CAUSES that feeling. It's parallel to having a fever: you wouldn't blame yourself for having a fever, which is a physical symptom of some diseases, so don't blame yourself for being anxious -- because anxiety IS a symptom of Lyme, caused by the direct biochemical effects of the infection, and also the loss of Mg that is used up by the Lyme bacteria.
So here's your order of battle: (1) get some good Mg supplements [see notes above], and as soon as you get back from the store, then (2) find a Lyme doc.
There ARE Lyme docs in Canada. As in the US, Lyme specialists tend to keep a low profile, because the mainstream medical profession doesn't yet realize what Lyme docs know: that Lyme is common (not rare) and requires extended antibiotics (testing not only for Lyme but also for coinfections carried by the Lyme ticks). The split in the medical community is not your fault, and your job is to accept that the med. community is messed up and to find yourself a good doc.
I just searched online for
----- canada lyme disease ---
and found links to canlyme [dot] com, which is a Lyme organization that takes Lyme and its coinfections seriously. The website has contact information for CanLyme people in various areas of Canada who can help guide you to docs who understand Lyme.
There are likely other groups too that you can find, and don't be shy about checking out several of them, since no one has a monopoly on information. Just do it.
The leftover minocycline you took may well have been inappropriate, because it's not used in treating Lyme, to my knowledge. Not all abx work for all diseases. You must see a Lyme doc who know what to test for (based on your symptoms) and then what meds to give you (depending on your infection[s]).
--- Lyme is not a do-it-yourself illness. ---
Take some magnesium, and then hit the canlyme website and get yourself an appointment. You won't be sorry.
If you don't hit it off with the first doc, then go to another. Just do it!!!
We've all been where you are, and the sooner you are diagnosed, the easier the cure, because the infection is not so established. Treatment for me (for Lyme and babesia) was about a year .... because Lyme has a particularly slow reproductive cycle and it is when the cell wall is dividing that it is most susceptible, and you also need antibiotics that piece the cell wall. Lyme is a special case, and it takes a Lyme specialist to know how to diagnose what infections you have, and how to treat them.
If you focus your nervous energy on the actions outlined above, it will help reduce your anxiety ... AND take magnesium, which will have the same effect. Just do it! You have nothing to lose by your Lyme and other infections. Anxiety makes it hard to focus and do things, but once you are in touch with a good Lyme doc, life will start to look better.
Lyme is NOT hopeless. I am living proof of that, and many others are as well. Your job is to find a Lyme specialist.
Do it today: canlyme.
Do it right now: canlyme.
Then report back to us that you did it, okay? We've all been where you are, and I certainly understand the anxiety. I am not a normally anxious person, and all my life since I was a kid, my family and friends have been amazed at how I am not rattled by stuff ... till I hit Lyme. NOW I understand what anxiety is like.
But even if you were anxious before Lyme, it may be worse WITH Lyme. I know it's hard, but right now, canlyme is waiting to hear from you!!!
So go online to their website and come back and tell us you went to the website and found a doc you have made an appointment with. Okay? OKAY!!!
You can beat this. Take the first step. Now.
And it's NOT you that's having a hard time dealing with Lyme: Lyme CAUSES that feeling. It's parallel to having a fever: you wouldn't blame yourself for having a fever, which is a physical symptom of some diseases, so don't blame yourself for being anxious -- because anxiety IS a symptom of Lyme, caused by the direct biochemical effects of the infection, and also the loss of Mg that is used up by the Lyme bacteria.
So here's your order of battle: (1) get some good Mg supplements [see notes above], and as soon as you get back from the store, then (2) find a Lyme doc.
There ARE Lyme docs in Canada. As in the US, Lyme specialists tend to keep a low profile, because the mainstream medical profession doesn't yet realize what Lyme docs know: that Lyme is common (not rare) and requires extended antibiotics (testing not only for Lyme but also for coinfections carried by the Lyme ticks). The split in the medical community is not your fault, and your job is to accept that the med. community is messed up and to find yourself a good doc.
I just searched online for
----- canada lyme disease ---
and found links to canlyme [dot] com, which is a Lyme organization that takes Lyme and its coinfections seriously. The website has contact information for CanLyme people in various areas of Canada who can help guide you to docs who understand Lyme.
There are likely other groups too that you can find, and don't be shy about checking out several of them, since no one has a monopoly on information. Just do it.
The leftover minocycline you took may well have been inappropriate, because it's not used in treating Lyme, to my knowledge. Not all abx work for all diseases. You must see a Lyme doc who know what to test for (based on your symptoms) and then what meds to give you (depending on your infection[s]).
--- Lyme is not a do-it-yourself illness. ---
Take some magnesium, and then hit the canlyme website and get yourself an appointment. You won't be sorry.
If you don't hit it off with the first doc, then go to another. Just do it!!!
We've all been where you are, and the sooner you are diagnosed, the easier the cure, because the infection is not so established. Treatment for me (for Lyme and babesia) was about a year .... because Lyme has a particularly slow reproductive cycle and it is when the cell wall is dividing that it is most susceptible, and you also need antibiotics that piece the cell wall. Lyme is a special case, and it takes a Lyme specialist to know how to diagnose what infections you have, and how to treat them.
If you focus your nervous energy on the actions outlined above, it will help reduce your anxiety ... AND take magnesium, which will have the same effect. Just do it! You have nothing to lose by your Lyme and other infections. Anxiety makes it hard to focus and do things, but once you are in touch with a good Lyme doc, life will start to look better.
Lyme is NOT hopeless. I am living proof of that, and many others are as well. Your job is to find a Lyme specialist.
Do it today: canlyme.
Do it right now: canlyme.
Then report back to us that you did it, okay? We've all been where you are, and I certainly understand the anxiety. I am not a normally anxious person, and all my life since I was a kid, my family and friends have been amazed at how I am not rattled by stuff ... till I hit Lyme. NOW I understand what anxiety is like.
But even if you were anxious before Lyme, it may be worse WITH Lyme. I know it's hard, but right now, canlyme is waiting to hear from you!!!
So go online to their website and come back and tell us you went to the website and found a doc you have made an appointment with. Okay? OKAY!!!
You can beat this. Take the first step. Now.
Good post, thank you.
Yes my anxiety is throught the roof! I am depressed, confused, disorientated, in a state of daily insomnia (have not slept for 5 weeks), inflamation, burning.
I have extremely high levels of regret that are mind blowing as this is the most difficult event in my entire life! I regret for one meeting this person after not seeing her for 8 years, and I also regret using that eVic vaping device. The 2 elements combined together is what did this to me. Consequences of this continue to run through my mind and I have been eating, sleeping, thinking, and reading nothing but Lyme for the past 5 weeks and it is not fun and I realize this is for the rest of my life!
And yes I am beating myself up about this and don't want to say to what extremes. The more I read on the internet about this the more hopeless it is!
I also live in Canada, and there are no good Lyme treatments here in Canada! BC Canada is probably the only place but that is it, I live in Alberta!
I self medicated with minocycline, it was a prior prescritpion for acne and so i used that in a prayer that it would help. Turns out it hasn't really helped!
I was healthy before this, was exercising daily, sleeping 8-10 hours a day, able to have sex. And now everything was lost, my health was lost. I have never been more deeply hurt about 1 event that happened in my entire life.
Okay that is my rant of deep distress and dispair. And I realize this will have a profound effect on my entire life. After having some problems with life, I finally built my career up to a good place and for once was seeing the light at the end of the tunnel, and now I feel like I fell into a deep dark cavern with no hope of getting out.
Sorry but that is my feelings.
Yes my anxiety is throught the roof! I am depressed, confused, disorientated, in a state of daily insomnia (have not slept for 5 weeks), inflamation, burning.
I have extremely high levels of regret that are mind blowing as this is the most difficult event in my entire life! I regret for one meeting this person after not seeing her for 8 years, and I also regret using that eVic vaping device. The 2 elements combined together is what did this to me. Consequences of this continue to run through my mind and I have been eating, sleeping, thinking, and reading nothing but Lyme for the past 5 weeks and it is not fun and I realize this is for the rest of my life!
And yes I am beating myself up about this and don't want to say to what extremes. The more I read on the internet about this the more hopeless it is!
I also live in Canada, and there are no good Lyme treatments here in Canada! BC Canada is probably the only place but that is it, I live in Alberta!
I self medicated with minocycline, it was a prior prescritpion for acne and so i used that in a prayer that it would help. Turns out it hasn't really helped!
I was healthy before this, was exercising daily, sleeping 8-10 hours a day, able to have sex. And now everything was lost, my health was lost. I have never been more deeply hurt about 1 event that happened in my entire life.
Okay that is my rant of deep distress and dispair. And I realize this will have a profound effect on my entire life. After having some problems with life, I finally built my career up to a good place and for once was seeing the light at the end of the tunnel, and now I feel like I fell into a deep dark cavern with no hope of getting out.
Sorry but that is my feelings.
When you got infected, where you got infected, how you got infected -- don't beat yourself up, because you may never know -- I had Lyme and babesia and never saw a tick or had a rash, and someone in family had the same infections too and also never saw a rash or tick.
Testing is not perfect. Docs who rely only on testing and not on a clinical (that is, symptoms) approach are missing half the picture. If your doc is relying solely on testing, then I'd consider seeing another Lyme specialist.
Did your doc test for co-infections like bartonella? It's no picnic either, but if your doc is focussed only on Lyme, then I'd see another doc. The symptoms of each of the half-dozen common co-infections blend with Lyme symptoms, and it takes a subtle doc to parse it all.
The level of anxiety your message indicates could be a symptom of Lyme and/or a co-infection too, so try not to be hard on yourself. Your body is doing the best it can, and it's on your side in this.
If you get tested by IGeneX and not just the ELISA/western blot tests, then you have a better chance of identifying a Lyme infection, because Lyme suppresses the immune system, and ELISA/western blot tests look for your immune system's reaction to a Lyme infection, not for the Lyme bacteria themselves. IGeneX's test is structured differently, looking for tiny bits of Lyme bacteria DNA, which is *direct* evidence of infection. The IGeneX testing is not generally used by nonLLMDs, but often used by LLMDs.
Minocycline, to my understanding, will (like doxycycline) kill Lyme only early in the infection, and unfortunately there is no magic line where you switch from 'early' to 'late.' I suspect that many of us have low-grade cases of Lyme etc. but our immune systems manage to hold them off until we are re-infected (ticks aren't choosy) or our immune system gets worn down.
If your doc is proposing to treat an entrenched case of Lyme only with minocycline, I'd get a second opinion from an LLMD.
And ... I hope you don't mind me saying, but your posts sound very stressed out, which I can understand, but it can also be a side effect of Lyme and/or co-infections that mess with your whole endocrine system, which affect mood and outlook. I would take your anxiety as a possible symptom of Lyme etc, and be sure the doc takes it into account too.
===>>> So, bottom line: try not to focus on how you got what you have, and instead focus on proper and effective diagnosis and treatment. First step: the right doc.
And try taking magnesium (Mg) supplements ... part of the anxiety in Lyme is that the bacteria use up Mg in your body. And, so I read, the American diet is often deficient in Mg, so Lyme makes it a double whammy. Low Mg --> anxiety.
I've read that the Cal-Mag combo of calcium and Mg is NOT very effective in Lyme, so I'd stick with any good supplement-store formulation that ends in "-ate": Mg malate, orotate, aspartate, citrate, etc. Be sure to tell your docs what you are taking, including supplements, so they can factor it in to your situation.
I'd start shopping for a new doc before blowing off the current one. A graceful transition is a good thing, so that you're not without an MD in a gap period.
Good for you for continuing to 'work the problem', as an engineer once described the process to me: go over the situation and look at it from different angles, till you get to one that makes the most sense, and then try after fixing the problem from that point of view. If that doesn't work, then go back to working the problem and try another approach. It puts some order on what can seem like a chaotic life with Lyme. I know, because I've been there too.
Keep us posted, and keep working the problem, okay? Take care.
Testing is not perfect. Docs who rely only on testing and not on a clinical (that is, symptoms) approach are missing half the picture. If your doc is relying solely on testing, then I'd consider seeing another Lyme specialist.
Did your doc test for co-infections like bartonella? It's no picnic either, but if your doc is focussed only on Lyme, then I'd see another doc. The symptoms of each of the half-dozen common co-infections blend with Lyme symptoms, and it takes a subtle doc to parse it all.
The level of anxiety your message indicates could be a symptom of Lyme and/or a co-infection too, so try not to be hard on yourself. Your body is doing the best it can, and it's on your side in this.
If you get tested by IGeneX and not just the ELISA/western blot tests, then you have a better chance of identifying a Lyme infection, because Lyme suppresses the immune system, and ELISA/western blot tests look for your immune system's reaction to a Lyme infection, not for the Lyme bacteria themselves. IGeneX's test is structured differently, looking for tiny bits of Lyme bacteria DNA, which is *direct* evidence of infection. The IGeneX testing is not generally used by nonLLMDs, but often used by LLMDs.
Minocycline, to my understanding, will (like doxycycline) kill Lyme only early in the infection, and unfortunately there is no magic line where you switch from 'early' to 'late.' I suspect that many of us have low-grade cases of Lyme etc. but our immune systems manage to hold them off until we are re-infected (ticks aren't choosy) or our immune system gets worn down.
If your doc is proposing to treat an entrenched case of Lyme only with minocycline, I'd get a second opinion from an LLMD.
And ... I hope you don't mind me saying, but your posts sound very stressed out, which I can understand, but it can also be a side effect of Lyme and/or co-infections that mess with your whole endocrine system, which affect mood and outlook. I would take your anxiety as a possible symptom of Lyme etc, and be sure the doc takes it into account too.
===>>> So, bottom line: try not to focus on how you got what you have, and instead focus on proper and effective diagnosis and treatment. First step: the right doc.
And try taking magnesium (Mg) supplements ... part of the anxiety in Lyme is that the bacteria use up Mg in your body. And, so I read, the American diet is often deficient in Mg, so Lyme makes it a double whammy. Low Mg --> anxiety.
I've read that the Cal-Mag combo of calcium and Mg is NOT very effective in Lyme, so I'd stick with any good supplement-store formulation that ends in "-ate": Mg malate, orotate, aspartate, citrate, etc. Be sure to tell your docs what you are taking, including supplements, so they can factor it in to your situation.
I'd start shopping for a new doc before blowing off the current one. A graceful transition is a good thing, so that you're not without an MD in a gap period.
Good for you for continuing to 'work the problem', as an engineer once described the process to me: go over the situation and look at it from different angles, till you get to one that makes the most sense, and then try after fixing the problem from that point of view. If that doesn't work, then go back to working the problem and try another approach. It puts some order on what can seem like a chaotic life with Lyme. I know, because I've been there too.
Keep us posted, and keep working the problem, okay? Take care.
Hi all. I still firmly believe I caught this from her. If you check on google there are other people that also believe they caught it from a source other than a tick. I for sure did not get bit by a tick and I am still firm on that mind set. Okay I guess I should be more honest about the transmission method that I believe happened. I am actually ashamed of the transmission route and it alone will probably be an unusual situation. However for the sake of honesty I should mention it.
I used to smoke cigarettes many years back and enjoyed them because I liked how they calmed me down, made me more alert, and relaxed me. But I quit because they made my lungs sore and obvious health reasons that smoking is unhealthy. Just a few months ago I found out about the Ecigs and thought I would try them out as I liked the nicotine feeling and thought these would be safer. I had an eVic which has a plastic mouth peice that you can remove. I used this when after leaving her. You pull the plastic mouth peice off to refill it with e-solution that has nicotine. But I had touched the tip with tip mouth peice with my fingers. What I am saying is that peice touch my lips, the same part that touched my hands, but I unfortuneatly I did not wash my hands. The mouth peice was plastic, and used for a month. So alraedy my own mouth germs were likely present on the mouth peice tip. Perhaps making a biofilm already.
I used this often for the next week. My first symptoms were sore throat, stiff neck, 24 hours later I got a burning in my lips, 48 hours later I started getting neuropathy and my lip buring got worse. 72 hours later my whole tongue caught on fire and was heavily inflamed, my whole lower face caught on fire and was inflamed, I panicked at that moment. Then I woke up that night and my whole brain caught on fire.
I have not been able to sleep since that night after my brain caught on fire and my symptoms have just progressed getting worse and worse. She has been diagnosed with Lyme by Igenex and has co-infections as well. This was passed on. I think that all the germs were passed on including Lyme, Bartonella, Babesia and the one that starts with an E. Just because a Lyme bacteria or these host bacterias can not grow and thrive outside of the host environment, doesn't mean it just dies instantly in an outside world, it may just be dormant, if it doesn't feed for some time it may die or if harsh conditions don't kill it, then it's possible it could be brought back to life in a host environment again.
It has been hard to culture, because this is not the environment it likes right?
There are lots of people on the internet who firmly believe their lyme was passed on by partners, families who belive it was passed on by sharing utensils, etc. There are lots of reports of women who have had it passed off from their male partners, and also lots of women who passed it on to their children. The only exception sometimes is that men are at times less likely to get it from their wives. So there are some husbands who have not yet caught it from their wife. But then there are also some men who say they have caught it from their wives.
Also wouldn't another factor be how infectious a person is? If they are untreated, and been infected for some time, wouldn't their bacterial load be high inside of them? Eventually bacteria are trying to disperse into other environments like diffusion no? She says she may have had it for years and to me she is highly infectious. She also once told me her CD57 was like 17.
I guess I just need to move forward? I am absolutley certain I did not get bit by a tick. This is the CDC standard, but how about ILADs? I realize it is not 'air-borne' otherwise we would have epidemics of this. Tick born is what we do know, who's to say person to person contact has not happened? People have claimed it has, just because there is no science that backs it up because nobody did any studies?
I got tested for 3 genotypes of Lyme bacteria, 3 weeks after exposure but that test came back negative, how long after will it test positive? I am at 6 weeks post exposure right now and am going to get re-tested today.
There is a chance that I am hoping maybe I just caught Bartonella, or some other disease. Anyways I have been taking the Cowden support protocol already and hopefully it will help, also I have been taking minocycline ever since my original infection. Which i have been taking daily 200 mg since 72 hours post exposure.
I talked to Doctors about this but they wouldn't prescribe me anything because they said "NO TICK MEANS NO RISK". And that is not true.
I used to smoke cigarettes many years back and enjoyed them because I liked how they calmed me down, made me more alert, and relaxed me. But I quit because they made my lungs sore and obvious health reasons that smoking is unhealthy. Just a few months ago I found out about the Ecigs and thought I would try them out as I liked the nicotine feeling and thought these would be safer. I had an eVic which has a plastic mouth peice that you can remove. I used this when after leaving her. You pull the plastic mouth peice off to refill it with e-solution that has nicotine. But I had touched the tip with tip mouth peice with my fingers. What I am saying is that peice touch my lips, the same part that touched my hands, but I unfortuneatly I did not wash my hands. The mouth peice was plastic, and used for a month. So alraedy my own mouth germs were likely present on the mouth peice tip. Perhaps making a biofilm already.
I used this often for the next week. My first symptoms were sore throat, stiff neck, 24 hours later I got a burning in my lips, 48 hours later I started getting neuropathy and my lip buring got worse. 72 hours later my whole tongue caught on fire and was heavily inflamed, my whole lower face caught on fire and was inflamed, I panicked at that moment. Then I woke up that night and my whole brain caught on fire.
I have not been able to sleep since that night after my brain caught on fire and my symptoms have just progressed getting worse and worse. She has been diagnosed with Lyme by Igenex and has co-infections as well. This was passed on. I think that all the germs were passed on including Lyme, Bartonella, Babesia and the one that starts with an E. Just because a Lyme bacteria or these host bacterias can not grow and thrive outside of the host environment, doesn't mean it just dies instantly in an outside world, it may just be dormant, if it doesn't feed for some time it may die or if harsh conditions don't kill it, then it's possible it could be brought back to life in a host environment again.
It has been hard to culture, because this is not the environment it likes right?
There are lots of people on the internet who firmly believe their lyme was passed on by partners, families who belive it was passed on by sharing utensils, etc. There are lots of reports of women who have had it passed off from their male partners, and also lots of women who passed it on to their children. The only exception sometimes is that men are at times less likely to get it from their wives. So there are some husbands who have not yet caught it from their wife. But then there are also some men who say they have caught it from their wives.
Also wouldn't another factor be how infectious a person is? If they are untreated, and been infected for some time, wouldn't their bacterial load be high inside of them? Eventually bacteria are trying to disperse into other environments like diffusion no? She says she may have had it for years and to me she is highly infectious. She also once told me her CD57 was like 17.
I guess I just need to move forward? I am absolutley certain I did not get bit by a tick. This is the CDC standard, but how about ILADs? I realize it is not 'air-borne' otherwise we would have epidemics of this. Tick born is what we do know, who's to say person to person contact has not happened? People have claimed it has, just because there is no science that backs it up because nobody did any studies?
I got tested for 3 genotypes of Lyme bacteria, 3 weeks after exposure but that test came back negative, how long after will it test positive? I am at 6 weeks post exposure right now and am going to get re-tested today.
There is a chance that I am hoping maybe I just caught Bartonella, or some other disease. Anyways I have been taking the Cowden support protocol already and hopefully it will help, also I have been taking minocycline ever since my original infection. Which i have been taking daily 200 mg since 72 hours post exposure.
I talked to Doctors about this but they wouldn't prescribe me anything because they said "NO TICK MEANS NO RISK". And that is not true.
I ditto the others. Lyme bacteria cannot survive outside the body like some other bacteria or viruses can (the kind you get from a sneeze). It has proven difficult to study because it is so hard to even culture. It is what they call "fastidious", which means it will die immediately if it doesn't have the exact conditions it needs, unlike the virus that can live on a towel or door knob.
As Cave said, Lyme can lie low in the body for months or years, often flaring up when another illness arrives or a major stressor weakens the immune system (death, surgery, job loss, et.al.). Perhaps you got a typical cold or flu bug from our friend and it set off a previously unknown case of Lyme or perhaps Bartonella. You could have gotten Lyme from a tick last spring, a tick you never saw, and you're just now feeling it. This is not uncommon.
You may be on to something with Bartonella. The symptoms have a great deal of overlap with Lyme, and in some patients, looks just like Lyme. The symptoms can vary greatly from patient to patient. It can be transmitted by about 2 dozen different insects. You could have been bit by something other than a tick, a bug you never saw, and you could have a full blown case of Bart.
I also encourage you to get IGeneX tested for Lyme and Bart. And encourage your friend to get treated for Lyme. She will only get worse over time, and the longer you and she wait, the harder it will be to get well.
As Cave said, Lyme can lie low in the body for months or years, often flaring up when another illness arrives or a major stressor weakens the immune system (death, surgery, job loss, et.al.). Perhaps you got a typical cold or flu bug from our friend and it set off a previously unknown case of Lyme or perhaps Bartonella. You could have gotten Lyme from a tick last spring, a tick you never saw, and you're just now feeling it. This is not uncommon.
You may be on to something with Bartonella. The symptoms have a great deal of overlap with Lyme, and in some patients, looks just like Lyme. The symptoms can vary greatly from patient to patient. It can be transmitted by about 2 dozen different insects. You could have been bit by something other than a tick, a bug you never saw, and you could have a full blown case of Bart.
I also encourage you to get IGeneX tested for Lyme and Bart. And encourage your friend to get treated for Lyme. She will only get worse over time, and the longer you and she wait, the harder it will be to get well.
Many of us never know exactly when we got Lyme and any coinfections, because we didn't see the tick or have a rash. Sometimes the symptoms can be so subtle that it takes time to realize we're actually sick and not just rundown from overdoing it at work or partying.
I have NO idea when exactly I got infected -- no tick, no rash, nothing but just feeling lousy and worn out more than usual, and it took about a year to get diagnosed. So don't stress over when, where, and how -- just confirm with a knowledgeable doc if you have it and if you have any co-infections that often come with it.
Focus forward.
Frustrating, I know, but that's how it goes with Lyme. Sneaky little bug, huh.
I have NO idea when exactly I got infected -- no tick, no rash, nothing but just feeling lousy and worn out more than usual, and it took about a year to get diagnosed. So don't stress over when, where, and how -- just confirm with a knowledgeable doc if you have it and if you have any co-infections that often come with it.
Focus forward.
Frustrating, I know, but that's how it goes with Lyme. Sneaky little bug, huh.
"I am going to be honest, I caught something from my lyme friend, Bartonella, lyme, or babesia, who knows, but it is something. Otherwise I wouldn't be here."
That may well be the case, Patrick but I seriously doubt that it was Lyme passed on through your friend.
You may have Lyme disease, though, as mentioned above, from an unnoticed tick bite in the past----- and it could have been quite a while in the past.
Please find a good llmd and get tested via Igenex as soon as possible in case you DO have Lyme. And ask him if he thinks it's possible to transmit Lyme disease from casual contact. If he says yes, then please ask him to give his reason, the case files that state that and bring it back to us.
As I said before I don't mind being proven wrong but it has to be more than word of mouth or conjecture. I'm still on the fence about Lida Mattman and her findings of live spirochetes in tears. If you can find where she states they were LIVE Borellia burgdorferi I'd like to read that.
That would also bring up the question of just how long could Bb survive on a handkerchief or counter top.
That may well be the case, Patrick but I seriously doubt that it was Lyme passed on through your friend.
You may have Lyme disease, though, as mentioned above, from an unnoticed tick bite in the past----- and it could have been quite a while in the past.
Please find a good llmd and get tested via Igenex as soon as possible in case you DO have Lyme. And ask him if he thinks it's possible to transmit Lyme disease from casual contact. If he says yes, then please ask him to give his reason, the case files that state that and bring it back to us.
As I said before I don't mind being proven wrong but it has to be more than word of mouth or conjecture. I'm still on the fence about Lida Mattman and her findings of live spirochetes in tears. If you can find where she states they were LIVE Borellia burgdorferi I'd like to read that.
That would also bring up the question of just how long could Bb survive on a handkerchief or counter top.
I am going to be honest, I caught something from my lyme friend, Bartonella, lyme, or babesia, who knows, but it is something. Otherwise I wouldn't be here.
So can Lyme and confections live outside a host or would they dry up? Being fragile? Also I heard lyme doesn't like oxygen. Would it try and hide in tissues or blood instead?
Also what about other confections? Like for example Bartonella ? I have read it is quite contagious and can be easily transmitted. Maybe even more so than lyme.
How about if the infection got transferred to a surface that was already colonized by bacteria different strain of bacteria usually safe? Would that make it more liveable? For example a tooth brush or a used straw.
I realize this is all speculation.
Also what about other confections? Like for example Bartonella ? I have read it is quite contagious and can be easily transmitted. Maybe even more so than lyme.
How about if the infection got transferred to a surface that was already colonized by bacteria different strain of bacteria usually safe? Would that make it more liveable? For example a tooth brush or a used straw.
I realize this is all speculation.
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