Aa
diagnosed 3rd stage Lyme (6y), afraid about heart and death. :(
Yesterday i was diagnosed Lyme disease i probably have undiagnosed since 2006 when i had tick byte in august and in november i had multiple neurological symptoms, weakness and pitting swelling on legs. They did disappeared after weeks but some symptoms persisted months and some do exists even now.
. Since then i had PVC's, EKG showed arrhythmias (and possible myocardial ischemia and possible myocardial injury, going to cardiologist) and i have many more symptoms like pain in fingers, toes, dizzy spells, eye ticks and flashes-floaters in vision)
My question is that can Lyme disease cause permanent heart disease and be ultimately fatal?
And if heart is damaged does it will recover after antibiotic treatment?
. Since then i had PVC's, EKG showed arrhythmias (and possible myocardial ischemia and possible myocardial injury, going to cardiologist) and i have many more symptoms like pain in fingers, toes, dizzy spells, eye ticks and flashes-floaters in vision)
My question is that can Lyme disease cause permanent heart disease and be ultimately fatal?
And if heart is damaged does it will recover after antibiotic treatment?
As a great and kindly man once said: Be not afraid.
It is bad news that you have Lyme, but good news that you have a diagnosis, because now you can begin to get well.
*Untreated* Lyme disease can be dangerous to your health, because it can affect the heart, but now you can be treated. I am not medically trained, and do not know that much about heart disease caused by Lyme, but it is my general understanding that antibiotic treatment will improve all your symptoms, and when the bacteria are dead, they can no longer hurt you. Whether there is lasting *structural* damage to the heart is something your doctor will tell you, but I would not spend time worrying about it, because you have now your best opportunity to avoid serious consequences: treatment!
Arrhythmias may be caused by low magnesium levels in the blood, because the Lyme bacteria use magnesium to reproduce. Muscle twitches, cramps, and pains can be caused by low magnesium levels. The heart is a muscle, so the same concept applies.
You say 'POSSIBLE myocardial injury', and your doctor will keep an eye on that going forward, so try not to worry, because worrying will only stress your immune system further. Get started on treatment, and see how you do.
Would you share with us what treatment your doctor is giving you?
Another thing to remember is that Lyme affects the neurological systems entirely, including the brain, and including body chemistry that affect the brain. The result is often anxiety and fear and depression, caused physically by body chemistry. With treatment, this resolves. Many of us here have been through that.
Be not afraid. (And let us know how you do, okay?)
It is bad news that you have Lyme, but good news that you have a diagnosis, because now you can begin to get well.
*Untreated* Lyme disease can be dangerous to your health, because it can affect the heart, but now you can be treated. I am not medically trained, and do not know that much about heart disease caused by Lyme, but it is my general understanding that antibiotic treatment will improve all your symptoms, and when the bacteria are dead, they can no longer hurt you. Whether there is lasting *structural* damage to the heart is something your doctor will tell you, but I would not spend time worrying about it, because you have now your best opportunity to avoid serious consequences: treatment!
Arrhythmias may be caused by low magnesium levels in the blood, because the Lyme bacteria use magnesium to reproduce. Muscle twitches, cramps, and pains can be caused by low magnesium levels. The heart is a muscle, so the same concept applies.
You say 'POSSIBLE myocardial injury', and your doctor will keep an eye on that going forward, so try not to worry, because worrying will only stress your immune system further. Get started on treatment, and see how you do.
Would you share with us what treatment your doctor is giving you?
Another thing to remember is that Lyme affects the neurological systems entirely, including the brain, and including body chemistry that affect the brain. The result is often anxiety and fear and depression, caused physically by body chemistry. With treatment, this resolves. Many of us here have been through that.
Be not afraid. (And let us know how you do, okay?)
I did suspected Lyme long time but i had no insurance, now on first visit i warned family doctor that they must look borreliosis and it came out positive. Unfortunately i do know more about Lyme than my family doctor, she said herself that infectionist may know much more.
I hope so cause he did write doxu 100mg 2 times on day 20 days, but i KNOW i have long term neuro borreliosis and i need intravenous very serious treatment. All i do afraid now is inadequate treatment.
I hope so cause he did write doxu 100mg 2 times on day 20 days, but i KNOW i have long term neuro borreliosis and i need intravenous very serious treatment. All i do afraid now is inadequate treatment.
she, my family doctor did wrote that doxu preparate. I hope infectionist is more knowledgeable
I'm already on antidepressants cause all that mess and possible Lyme too makes no good for my mental health
Here in the US, intravenous antibiotics are not always used -- the doctors have learned that oral antibiotics are usually just as effective, but each person is different.
20 days of doxy is the standard treatment here, but only by doctors who are not Lyme specialists.
Longer treatment is usually required, but perhaps the infectious disease doctor will know that.
I just searched (on google):
lyme disease estonia
There were some very interesting articles, and I hope you can find a doctor who understands Lyme. Here in the U.S., most infectious disease doctors ("infectionist" as you said) do not understand Lyme and do not give treatment long enough to cure. We in the U.S. have to find doctors who think progressively about Lyme, and you may need to do that in Estonia as well.
If the infectious disease doctor that you see is up to date, but if he or she is not, then find another doctor. It is understandable that you are upset and depressed. That is true for many, many people with Lyme.
Be strong, let us know how you do and what you hear from the doctors.
20 days of doxy is the standard treatment here, but only by doctors who are not Lyme specialists.
Longer treatment is usually required, but perhaps the infectious disease doctor will know that.
I just searched (on google):
lyme disease estonia
There were some very interesting articles, and I hope you can find a doctor who understands Lyme. Here in the U.S., most infectious disease doctors ("infectionist" as you said) do not understand Lyme and do not give treatment long enough to cure. We in the U.S. have to find doctors who think progressively about Lyme, and you may need to do that in Estonia as well.
If the infectious disease doctor that you see is up to date, but if he or she is not, then find another doctor. It is understandable that you are upset and depressed. That is true for many, many people with Lyme.
Be strong, let us know how you do and what you hear from the doctors.
Now its my first day on Doxy, infectionist said that there is no more needed than 20 days and that it is on most cases effective. She also said, that heart block (wich i probably have) is rarely permanent and cardiomegaly even more rare. I hope antibiotics kills those little critters...
Yes, 20 days of doxy is the 'standard' treatment, but many fine and knowledgeable MDs believe that this 'standard' is hugely inadequate because of the particular characteristics of Lyme.
One of those characteristics is a very slow reproductive cycle compared to other bacteria, and it is when dividing that bacteria are most susceptible to antibiotics. Leprosy (Hansen's disease) and tuberculosis (TB) are other bacterial diseases with this same characteristic, and standard medical treatment for these diseases is many months of antibiotics. Why do MDs not take this approach with Lyme? I do not know.
ILADS [dot] org has information useful to an MD in understanding the more progressive view of Lyme. Perhaps your MD would be interested.
Best wishes to you -- let us know how you do.
One of those characteristics is a very slow reproductive cycle compared to other bacteria, and it is when dividing that bacteria are most susceptible to antibiotics. Leprosy (Hansen's disease) and tuberculosis (TB) are other bacterial diseases with this same characteristic, and standard medical treatment for these diseases is many months of antibiotics. Why do MDs not take this approach with Lyme? I do not know.
ILADS [dot] org has information useful to an MD in understanding the more progressive view of Lyme. Perhaps your MD would be interested.
Best wishes to you -- let us know how you do.
"Perhaps your MD would be interested."
I doubt. We have already serious shortage of doctors and medics (many of them are going to other countries where is better income) so i they have no time for longer chat and i have no change to choose someone else. I think i MUST stuck on this treatment they give me and hope that this will work on my particular case.
I doubt. We have already serious shortage of doctors and medics (many of them are going to other countries where is better income) so i they have no time for longer chat and i have no change to choose someone else. I think i MUST stuck on this treatment they give me and hope that this will work on my particular case.
You say, "Pardon my English"? Oh my! Your English is most excellent, and of course far far better than my Estonian, of which I have none.
I understand what you say about your situation with doctors. I would suggest then that you look around on the internet for information about herbal treatment after you take the antibiotics.
There is an herbalist named Stephen Buhner who has written books (available on Amazon . com and elsewhere) on thoughtful treatments for Lyme and co-infections.
One of his books I have is 'Healing Lyme'. While I am not big on herbal medicine generally, I do respect his approach, because he explains it fully instead of saying 'take this' with no explanation.
Best wishes -- let us know how you do.
I understand what you say about your situation with doctors. I would suggest then that you look around on the internet for information about herbal treatment after you take the antibiotics.
There is an herbalist named Stephen Buhner who has written books (available on Amazon . com and elsewhere) on thoughtful treatments for Lyme and co-infections.
One of his books I have is 'Healing Lyme'. While I am not big on herbal medicine generally, I do respect his approach, because he explains it fully instead of saying 'take this' with no explanation.
Best wishes -- let us know how you do.
I have been on doxy 3 months and it actually made some symptoms worse but my high white count and sed rate came down to normal after having it elevated for 6 months that I know of, but nobody knew what was wrong after taking every test in the book.. Mono came back positive at the start of this worsening episode.
I still have thryroid issues that are getting worse and other neuro issues. My nurse friend who has it, says in one way, she is glad I am getting sick because it means that the little critters (as she calls Lyme/co-infections) are fighting back from the anti-biotic and it often happens to people she knows and with her own illness, that when you add a treatment, then it is not unusual that it could become worse before getting better. In addition to being a nurse she is a counselor and since she works in the office in VA where the LLMD is, she gets many clients referred to her that have Lyme and are depressed. I remember her telling me years ago to get tested there but that LLMD, takes no insurance for visits, or the IV treatments or any tests and is super expensive . I just couldn't afford her.
I still have thryroid issues that are getting worse and other neuro issues. My nurse friend who has it, says in one way, she is glad I am getting sick because it means that the little critters (as she calls Lyme/co-infections) are fighting back from the anti-biotic and it often happens to people she knows and with her own illness, that when you add a treatment, then it is not unusual that it could become worse before getting better. In addition to being a nurse she is a counselor and since she works in the office in VA where the LLMD is, she gets many clients referred to her that have Lyme and are depressed. I remember her telling me years ago to get tested there but that LLMD, takes no insurance for visits, or the IV treatments or any tests and is super expensive . I just couldn't afford her.
I have read that Lyme can mess with thyroid function, but don't know the details. Thyroid problems seem to run in families, and it does in mine, so whether mine started because of Lyme or otherwise, I dunno. But I am taking smaller than 'normal' doses now and it works GREAT. It took a while to stabilize on it, and now I feel like regular me.
About IV treatment, I've read and heard that oral meds are often just as effective as IV, and that earlier approaches of commonly using IV are not used as often now. In some cases, I'm guessing there are reasons to do use it, but perhaps fewer now. That would keep the cost down for you.
About IV treatment, I've read and heard that oral meds are often just as effective as IV, and that earlier approaches of commonly using IV are not used as often now. In some cases, I'm guessing there are reasons to do use it, but perhaps fewer now. That would keep the cost down for you.
I hope that 20 days doxy is enough for me cause after acute phase i had relatively little symptoms, i can still ride bicycle 40km on day and no joint pains. Just some shooting finger-toe pains, eye ticks, eye flashes and bad memory. And PVC's.
My EKG results worries me most, i don't smoke, i don't drink, i do exercise and my blood pressure and cholesterol level is great...last thing i want now is that my heart is messed up because of some stupid infection that i haven't any way to avoid of...
My EKG results worries me most, i don't smoke, i don't drink, i do exercise and my blood pressure and cholesterol level is great...last thing i want now is that my heart is messed up because of some stupid infection that i haven't any way to avoid of...
I also hope you are cured. Lyme bacteria can lie dormant (sleeping) for a long time, only to awaken after another illness (or a second infection with Lyme) or severe bodily stress (like a bad accident) occurs. Several people here have reported that, including me. I do not know when I first got Lyme, but had small symptoms for a year or two and then suddenly was very ill with it, after a time spent touring many grassy places on vacation.
How much damage Lyme can do when it is quiet in the body, I do not know, and each person's body is different in how well it holds off the bacteria. The bacteria do live in muscle and cartilege, and the heart is made of ... muscle and cartilege, so ....
I just searched
lyme cardiac
and found many interesting articles. You may wish to do some reading to understand the risks, symptoms, etc. Again, herbal and other alternative treatments may be of interest to you if antibiotics are not obtainable on a long term basis.
How much damage Lyme can do when it is quiet in the body, I do not know, and each person's body is different in how well it holds off the bacteria. The bacteria do live in muscle and cartilege, and the heart is made of ... muscle and cartilege, so ....
I just searched
lyme cardiac
and found many interesting articles. You may wish to do some reading to understand the risks, symptoms, etc. Again, herbal and other alternative treatments may be of interest to you if antibiotics are not obtainable on a long term basis.
_I do not know when I first got Lyme, but had small symptoms for a year or two and then suddenly was very ill with it, after a time spent touring many grassy places on vacation._
As we know, borreliosis does not give immunity, it may well happened that you had another bite and acute symptoms. That worries me too, cause blood test stays positive years after first disease is cured and another infection (especially when bite is undetected) may make things very confusing and messy....
As we know, borreliosis does not give immunity, it may well happened that you had another bite and acute symptoms. That worries me too, cause blood test stays positive years after first disease is cured and another infection (especially when bite is undetected) may make things very confusing and messy....
Yes, I think that is exactly what happened to me: a second tick, and it also brought Babesiosis (like malaria). Not pretty. Like many people, I never saw either tick, and never had a rash, but I was terribly ill.
It is indeed confusing and messy. It is bad enough having a body that hurts, but when the infection also affects the mind and emotions, that is simply cruel.
The thing to do is to not give up. You may be able to find a sympathetic doctor who understands about Lyme and would be willing to treat you aggressively. Everyone here knows how difficult and lonely it is to have Lyme. Is there a support group in your area that you could join?
Here is an abstract of a 2004 article written about Lyme in Estonia. Perhaps if you contact the authors they could give you some help to find a good doctor.
========================================================
Int J Med Microbiol. 2004 Apr;293 Suppl 37:174-8.
Serological description of Estonian patients with Lyme disease, a comparison with control sera from endemic and non-endemic areas.
Kisand KE, Utt M, Kisand KV, Prükk T, Uibo R.
University of Tartu, Department of Immunology, Tartu, Estonia. ***@****
Abstract
Serological tests for Lyme disease are mostly not well standardized and cases of misinterpretation of test results by clinicians are rather common. The diagnostic value of serologic tests may also depend on the seroepidemiological situation of the population. The aim of the study was to compare the immunoblot pattern of Lyme borreliosis patients and control sera from endemic and non-endemic regions and to identify the most suitable interpretation criteria for our immunoblot test. Serum samples of 24 Estonian patients with Lyme disease, 12 sera from patients with tick-borne encephalitis, 40 Estonian control sera, and sera from 50 Laplanders from North Sweden where people usually never come into contact with ticks were tested for IgG antibodies to Borrelia. Sonicated lysate of Borrelia afzelii (strain ACA1) was used in immunoblot as source of antigens. In our test system the following interpretation criteria gave the specificity of 96% for Estonian population: > or = 1 band from p58, p21, p17 and p14 plus > or = 2 bands from p83/100, p39, p34, p30 and p25; or > or = 4 bands from p83/100, p39, p34, p30 and p25. The comparison of Estonian controls with Laplanders showed that subclinical infections with Borrelia are rather common in Estonia. Also the rate of other infections, giving rise to cross-reactive antibodies, may be more frequent in Estonians. The frequent reactions with Borrelia antigens in a healthy population complicate the serodiagnosis of Lyme disease.
PMID:
15147004
[PubMed - indexed for MEDLINE]
==================================================
Best wishes --
It is indeed confusing and messy. It is bad enough having a body that hurts, but when the infection also affects the mind and emotions, that is simply cruel.
The thing to do is to not give up. You may be able to find a sympathetic doctor who understands about Lyme and would be willing to treat you aggressively. Everyone here knows how difficult and lonely it is to have Lyme. Is there a support group in your area that you could join?
Here is an abstract of a 2004 article written about Lyme in Estonia. Perhaps if you contact the authors they could give you some help to find a good doctor.
========================================================
Int J Med Microbiol. 2004 Apr;293 Suppl 37:174-8.
Serological description of Estonian patients with Lyme disease, a comparison with control sera from endemic and non-endemic areas.
Kisand KE, Utt M, Kisand KV, Prükk T, Uibo R.
University of Tartu, Department of Immunology, Tartu, Estonia. ***@****
Abstract
Serological tests for Lyme disease are mostly not well standardized and cases of misinterpretation of test results by clinicians are rather common. The diagnostic value of serologic tests may also depend on the seroepidemiological situation of the population. The aim of the study was to compare the immunoblot pattern of Lyme borreliosis patients and control sera from endemic and non-endemic regions and to identify the most suitable interpretation criteria for our immunoblot test. Serum samples of 24 Estonian patients with Lyme disease, 12 sera from patients with tick-borne encephalitis, 40 Estonian control sera, and sera from 50 Laplanders from North Sweden where people usually never come into contact with ticks were tested for IgG antibodies to Borrelia. Sonicated lysate of Borrelia afzelii (strain ACA1) was used in immunoblot as source of antigens. In our test system the following interpretation criteria gave the specificity of 96% for Estonian population: > or = 1 band from p58, p21, p17 and p14 plus > or = 2 bands from p83/100, p39, p34, p30 and p25; or > or = 4 bands from p83/100, p39, p34, p30 and p25. The comparison of Estonian controls with Laplanders showed that subclinical infections with Borrelia are rather common in Estonia. Also the rate of other infections, giving rise to cross-reactive antibodies, may be more frequent in Estonians. The frequent reactions with Borrelia antigens in a healthy population complicate the serodiagnosis of Lyme disease.
PMID:
15147004
[PubMed - indexed for MEDLINE]
==================================================
Best wishes --
There are also MANY MANY other treatments for LYME besides antibiotics.
My Lyme Literate MD (LLMD) told me yesterday that he thinks that ultimately
that abx will not be the cure. He believes that SAUNAS are extremely important
you have to raise your core body temp over 104 degress (many many times!!)
to KILL the spirochetes. Abx just kill SOME of them, and others HIDE. or turn
into cysts and then come out when you stop the drugs.
Please visit lymefriends.ning.com for more info. Google a lot.
Do not take lyme as a life sentence.
You also must be VERY careful of what you put in your body try to create an alkaline environment becasue lyme likes it ACID! EAt lots of vegetables. limit meat and sugars
and carbs. There are many good books and websites out there.
Watch the movie "Under our Skin" there is hope. There is also a big coverup.
They are not diagnosing lyme adequately (I was also infwcted in 2005 an not treated til 2009) it takes much longer to recover with delayed treatment. but it can be done!
Also many people do not know that lyme is a spirochete like syphillis and could be transmitted in simmilar ways. Your partners may also want to be tested.
You may want to get your CD57+ tested as well as C4a and C3a to check the status of your immune system.
Dont want to overhwlem you, but there is much to learn and knowledge is power.
-Best of health, Sea
My Lyme Literate MD (LLMD) told me yesterday that he thinks that ultimately
that abx will not be the cure. He believes that SAUNAS are extremely important
you have to raise your core body temp over 104 degress (many many times!!)
to KILL the spirochetes. Abx just kill SOME of them, and others HIDE. or turn
into cysts and then come out when you stop the drugs.
Please visit lymefriends.ning.com for more info. Google a lot.
Do not take lyme as a life sentence.
You also must be VERY careful of what you put in your body try to create an alkaline environment becasue lyme likes it ACID! EAt lots of vegetables. limit meat and sugars
and carbs. There are many good books and websites out there.
Watch the movie "Under our Skin" there is hope. There is also a big coverup.
They are not diagnosing lyme adequately (I was also infwcted in 2005 an not treated til 2009) it takes much longer to recover with delayed treatment. but it can be done!
Also many people do not know that lyme is a spirochete like syphillis and could be transmitted in simmilar ways. Your partners may also want to be tested.
You may want to get your CD57+ tested as well as C4a and C3a to check the status of your immune system.
Dont want to overhwlem you, but there is much to learn and knowledge is power.
-Best of health, Sea
I always strengthen my immune system, and i do have healthy lifestyle so i'm not desperate about lyme, i'm pretty sure it will be cured. What worries me most is possible heart condition, it may be permanent and in case of dilated cardiomyopathy (worst possible case), this lyme infection will ultimately prove to be fatal cause it (DCM) will give me only very short time to live...
Cause acute symptoms in 2006 started with signs of heart condition (weakness, pitting bilateral leg edema) i have a reason to worry.
Cause acute symptoms in 2006 started with signs of heart condition (weakness, pitting bilateral leg edema) i have a reason to worry.
The best (and only) thing to do, in my opinion, is to pursue treatment to kill the bacteria. Worrying is part of Lyme, too, but it is a part that we each learn to handle in our own ways. Sometimes the worry is overwhelming, but if I allow myself a half hour to worry, and then get up and go do something else, it helps.
Once treatment is underway, the worry will also recede. I remember being very depressed and anxious, but that is part of the illness, the physical illness.
It may help to speak with a therapist/psychologist for techniques in dealing with the worry. It's not all in your head -- it's a side effect of Lyme, and also a natural emotional and psychological reaction to having Lyme. You are not alone in this reaction: many if not most or all of us have this aspect.
Your doctor may be able to tell you what the likelihood is of permanent heart damage, and ask him/her about whether your life is at risk. It is a very reasonable question, and it deserves a serious answer.
Once you have the medical assessment, then you must decide whether to let the worry haunt you or to consciously set the worry to one side and carry on with life. It really is a conscious choice. Again, some discussion with a psychologist may be very helpful to you.
And remember, you are not alone in having this worry. It is part of the illness.
Once treatment is underway, the worry will also recede. I remember being very depressed and anxious, but that is part of the illness, the physical illness.
It may help to speak with a therapist/psychologist for techniques in dealing with the worry. It's not all in your head -- it's a side effect of Lyme, and also a natural emotional and psychological reaction to having Lyme. You are not alone in this reaction: many if not most or all of us have this aspect.
Your doctor may be able to tell you what the likelihood is of permanent heart damage, and ask him/her about whether your life is at risk. It is a very reasonable question, and it deserves a serious answer.
Once you have the medical assessment, then you must decide whether to let the worry haunt you or to consciously set the worry to one side and carry on with life. It really is a conscious choice. Again, some discussion with a psychologist may be very helpful to you.
And remember, you are not alone in having this worry. It is part of the illness.
Hi, Thyroid problems do not run in my family, but they it is so messed up now.
I am reminded of my depression and anxiety, that came on about 6 years ago along with fatigue. My Lyme Literate nurse friend suggested testing for Lyme then but I had no insurance or money to cover it. I now also have problems with my memory, but I am sure, 6 yrs ago is when it first happened or appeared
.I got better but now it came out of the dormant stage due to stress, maybe of the mono I had in December or maybe from my divorce or because I also find out at the same time that I have genetic Hemachromatosis. Since the hematologist/oncologist tested for it genetically it probably isn't related to Lyme but I find the timing strange.
I still take my depression/anxiety medication since my friend told me too and until I move and see my LLMD. All I can say is this is really tough and worse when you are all alone in a place that I know nobody due to my soon to be ex husband. I was so weak and dizzy that on the way to the grocery store, my car went into a concrete wall that was on the road for construction. Got myself straightened out but cried all the way home. I can't wait to move!
I am reminded of my depression and anxiety, that came on about 6 years ago along with fatigue. My Lyme Literate nurse friend suggested testing for Lyme then but I had no insurance or money to cover it. I now also have problems with my memory, but I am sure, 6 yrs ago is when it first happened or appeared
.I got better but now it came out of the dormant stage due to stress, maybe of the mono I had in December or maybe from my divorce or because I also find out at the same time that I have genetic Hemachromatosis. Since the hematologist/oncologist tested for it genetically it probably isn't related to Lyme but I find the timing strange.
I still take my depression/anxiety medication since my friend told me too and until I move and see my LLMD. All I can say is this is really tough and worse when you are all alone in a place that I know nobody due to my soon to be ex husband. I was so weak and dizzy that on the way to the grocery store, my car went into a concrete wall that was on the road for construction. Got myself straightened out but cried all the way home. I can't wait to move!
You're having a rough time, I can tell. Take care, be careful! Things will get better.
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