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Possible Lyme?
Hello, About this time last year I got into a bunch of ticks doing some tree work. Not long after I started experincing muscle soreness in my neck and left shoulder. Then in Ocotober I had a bout of nausea for no reason that took me out of commision for a week. I ended up having a heart problem that put me in the hospital (rythm) that I believe they fixed with an ablation in November of last year. Since then I have had constant nauseouness, tingling in my hands and feet, arms and legs feel very heavy, abdominal pain, toes and fingers hurt and burning sensations. The Drs have sent me thru the neourlogist test mill (MRI on spinal colomun) and the cardiologist had me wear a heart monitor for 30 days. I have had a colonoscopy and endoscopy. All those test show no reson for these symptons. So my question is, could Lyme be casuing these symptons? They go up and down in severity but never really go away. Any help would be appreciated.
This is SUCH a classic response by nonLLMDs. I am so sorry you got that response, but glad for you that you are making progress in diagnosis and toward treatment.
It is not uncommon for LLMDs to get paid by the patient and not be signed up with insurance companies. I understand that the insurance companies try to tell the docs what the insurance company believes is correct treatment, meaning a couple weeks of doxycycline and then bye bye no matter how sick you still are.
My LLMD did not take insurance either, so I paid and then took the receipt the doc gave me and submitted it to my insurance company. The ins. co. always reimbursed me what they would for any other medical expense, and I hear that is pretty common. I think the whole dodge for the ins. companies is that they are supposed to reimburse only for non-wacky, so-called mainstream approaches to medicine, but somehow if it's reimbursement instead of a direct payment to the doc, it's okay. LLMDs don't generally follow the CDC/IDSA approaches to Lyme, and that's where the insurance companies get queasy.
My LLMD didn't need to have a huge billing staff since he didn't send bills to the insurance company, so it also kept the costs down for me. I paid the doc, the doc gave me an itemized receipt, I submitted the receipt to my insurance, and my insurance paid me back at the out-of-network rate, which was quite good.
Call your ins company and ask, "If I see a doc not in your network, what do you need to reimburse me and how do you figure out how much to reimburse?" Even if they don't give you details of what percentage you will get, etc., you will probably get a feel for their process.
If you are truly strapped, there are charities that can help with your medical expenses, so I hear. One is called Lyme-TAP [short for Lyme Test Access Program] and the other I have heard of is the Lymelight Foundation, but I don't know any more than that.
If you need to use your savings, or sell grandpa's restored '37 Buick or grandma's diamond ring, or borrow from family and friends, I'd do it. Lyme won't just go away, and it's worth every penny to be well again.
Hang tough, keep us posted! This is progress.
It is not uncommon for LLMDs to get paid by the patient and not be signed up with insurance companies. I understand that the insurance companies try to tell the docs what the insurance company believes is correct treatment, meaning a couple weeks of doxycycline and then bye bye no matter how sick you still are.
My LLMD did not take insurance either, so I paid and then took the receipt the doc gave me and submitted it to my insurance company. The ins. co. always reimbursed me what they would for any other medical expense, and I hear that is pretty common. I think the whole dodge for the ins. companies is that they are supposed to reimburse only for non-wacky, so-called mainstream approaches to medicine, but somehow if it's reimbursement instead of a direct payment to the doc, it's okay. LLMDs don't generally follow the CDC/IDSA approaches to Lyme, and that's where the insurance companies get queasy.
My LLMD didn't need to have a huge billing staff since he didn't send bills to the insurance company, so it also kept the costs down for me. I paid the doc, the doc gave me an itemized receipt, I submitted the receipt to my insurance, and my insurance paid me back at the out-of-network rate, which was quite good.
Call your ins company and ask, "If I see a doc not in your network, what do you need to reimburse me and how do you figure out how much to reimburse?" Even if they don't give you details of what percentage you will get, etc., you will probably get a feel for their process.
If you are truly strapped, there are charities that can help with your medical expenses, so I hear. One is called Lyme-TAP [short for Lyme Test Access Program] and the other I have heard of is the Lymelight Foundation, but I don't know any more than that.
If you need to use your savings, or sell grandpa's restored '37 Buick or grandma's diamond ring, or borrow from family and friends, I'd do it. Lyme won't just go away, and it's worth every penny to be well again.
Hang tough, keep us posted! This is progress.
Hello again, so since the last time I posted here I have been thru the heart stress stuff and all is good there of course. My Dr finally did a Lyme test (standard ELISA or Western Blot). The test showed I had four of the markers that would indicate Lyme, but she said you need five to have it. She sent me to an infectious disease dr that told me immediatly that he knows nothing about Lyme and I was wasting my time with him. I then took the test results to another infectiouse disease dr that people I know said has helped people with Lyme. She showed me on the test that I didnt have two markers that would indicate Lyme and since I have not been in Conn. or Ohio I do not have Lyme. So now I dont knwo what to do, I did find a LLMD nearby but they dont take insurance so I have to pay for everything up front. I dont mind paying if I thought they could help me get better, or at lest figur out what is going on with me. The infectious disease drs had no interest in trying to figure what I have. Any advice?
Thank you so much for the help, information and encouragment. I do hope to find out what is wrong with me before it progress's to the point of being debilitated.
Yes, treatment is with antibiotics. Docs who don't really understand Lyme very well will often prescribe only doxycycline, which can work very, very early in the infection, but once it is established, the Lyme bacteria hide themselves in slimy areas called biofilms, where doxy can't penetrate. A Lyme specialist knows that, and will use different/additional meds to reach the Lyme where it lives.
Another issue is that the 'Lyme' ticks also carry other, separate infections about half the time. These bonus bugs need different tests from Lyme and usually also need different antibiotics.
So, yes, antibiotics is the treatment. Long term (months) of antibiotics can indeed cause digestive problems by killing off not only the Lyme etc. bacteria, but also killing off the 'good' bacteria that normally populate a healthy gut. The answer for that is to take probiotics while under treatment.
The trick with the probiotics is that antibiotics will kill not only the Lyme etc. bacteria, but also the bacteria that make up the probiotics. There are two ways around that: (1) take a non-bacteria-based probiotic, such as S. boulardii, which is sold under at least one brand name that I am aware of (Florastor); or (2) carefully time taking the probiotic away from the time you take the antibiotics, so that they don't conflict. I don't recall now how far that time gap needs to be, but a pharmacist should know and so should your doc. (I'm thinking a couple of hours? Somebody here correct me.)
[Side note: I had a bad reaction to the S.boulardii, which my doc said was probably just an unusual sensitivty I may have to mold, which is related to fungal-based probiotics like Florastor. Doc said he had 'never' seen that happen to anyone before, so I wouldn't worry about it, just fyi. To get around that problem, I took acidophilus-based probiotic instead, the only trick being that I had to take it at least a couple of hours away from the antibiotics, because if taken too close together in time, the antiobiotics will kill the acidophilus and make the whole effort useless.]
More detail than you wanted, but don't worry about taking antibiotics. There seems to be a concern among many people that taking antibiotics is a bad thing somehow, but if taken for the full course (don't stop early because you 'feel better'), the bacteria will be gone, and that is the whole object of the exercise.
Gotta keep the eye on the ball: getting rid of Lyme.
Another issue is that the 'Lyme' ticks also carry other, separate infections about half the time. These bonus bugs need different tests from Lyme and usually also need different antibiotics.
So, yes, antibiotics is the treatment. Long term (months) of antibiotics can indeed cause digestive problems by killing off not only the Lyme etc. bacteria, but also killing off the 'good' bacteria that normally populate a healthy gut. The answer for that is to take probiotics while under treatment.
The trick with the probiotics is that antibiotics will kill not only the Lyme etc. bacteria, but also the bacteria that make up the probiotics. There are two ways around that: (1) take a non-bacteria-based probiotic, such as S. boulardii, which is sold under at least one brand name that I am aware of (Florastor); or (2) carefully time taking the probiotic away from the time you take the antibiotics, so that they don't conflict. I don't recall now how far that time gap needs to be, but a pharmacist should know and so should your doc. (I'm thinking a couple of hours? Somebody here correct me.)
[Side note: I had a bad reaction to the S.boulardii, which my doc said was probably just an unusual sensitivty I may have to mold, which is related to fungal-based probiotics like Florastor. Doc said he had 'never' seen that happen to anyone before, so I wouldn't worry about it, just fyi. To get around that problem, I took acidophilus-based probiotic instead, the only trick being that I had to take it at least a couple of hours away from the antibiotics, because if taken too close together in time, the antiobiotics will kill the acidophilus and make the whole effort useless.]
More detail than you wanted, but don't worry about taking antibiotics. There seems to be a concern among many people that taking antibiotics is a bad thing somehow, but if taken for the full course (don't stop early because you 'feel better'), the bacteria will be gone, and that is the whole object of the exercise.
Gotta keep the eye on the ball: getting rid of Lyme.
Thanks for trying to help me, I go for the first of two stress test today, but I expect them to find nothing. One last question if you dont mind though. What is the treatment if you have Lymes? I have read that antibiotics is the recommended course but that is not good for your intestines I understand.
Thanks
Thanks
I agree with what you write above. Any 'tick encounter' is indeed suspicious.
My LLMD told me that it's rare to find two patients who have Lyme disease that have the exact same symptoms. It is a multi-systemic disease and when one goes from doctor to doctor without any of them being able to pinpoint the issue, it's a good idea to rule out Lyme disease. Your symptoms sound suspicious, especially given the fact that you had a tick encounter. I agree with Jackie that you should find a Lyme-literate MD (LLMD). Good luck to you!
You're quite welcome. Bear in mind that there are a variety of symptoms in Lyme, and the medical community has overdone trying to make a definitive, final list of what symptoms constitute Lyme. The docs who set diagnostic and treatment standards for Lyme for the IDSA [Infectious Disease Society of America] are stuck on what was known about Lyme several decades ago, and they have not updated their views and conclusions for a very long time.
Like any group of humans, those at the top who are not accountable to anyone but themselves tend to put great weight on their own previous views and conclusions, regardless of how much other research has been done and regardless of the dynamic nature of [in this case] bacterial illnesses and their demographics.
On the flip side, there are docs out there that I wouldn't let diagnose my dog or put gas in my tank, so you still have to be on the lookout for those who think they are wise visionaries but simply aren't. On the other side of the aisle, there is no admission test to be a member of ILADS (the better of the two Lyme associations), and some of the member docs are a bit ... odd. So keep your wits about you, and if things don't feel right, find another doc.
We're lurking here, so feel free to come back with any questions and especially with updates on how you're doing. We've all been where you are, one way or another.
Like any group of humans, those at the top who are not accountable to anyone but themselves tend to put great weight on their own previous views and conclusions, regardless of how much other research has been done and regardless of the dynamic nature of [in this case] bacterial illnesses and their demographics.
On the flip side, there are docs out there that I wouldn't let diagnose my dog or put gas in my tank, so you still have to be on the lookout for those who think they are wise visionaries but simply aren't. On the other side of the aisle, there is no admission test to be a member of ILADS (the better of the two Lyme associations), and some of the member docs are a bit ... odd. So keep your wits about you, and if things don't feel right, find another doc.
We're lurking here, so feel free to come back with any questions and especially with updates on how you're doing. We've all been where you are, one way or another.
Thank you so much for the advice, when I looked up the symptons for Lymes I didnt have the classic ones. But I have felt bad for a year now and the stiffness in my arms and legs is getting worse so I am searchning for any answers I can find. Thanks again.
Welcome to MedHelp -- Sorry to hear what you've been through and are dealing with still --
In your situation, I would find a Lyme specialist for a workup just to be sure about having Lyme or not. It doesn't go away by itself.
Except for *having* Lyme, the hardest thing can be finding a doc who *understands* Lyme. There is a split in the medical community about whether Lyme is serious, how common it is, how to diagnose it, and how to treat it. It's a very strange situation, but it can be coped with once you are aware of it.
The docs you have seen are probably good ones, with lots of training and experience in their fields, and their knowledge of Lyme likely comes from the standard views of the medical profession that Lyme is rare, hard to get, and easy to cure.
Unfortunately, that train left the station a long time ago, because Lyme is everywhere and going strong, it's easy to get because the tiny ticks that carry it are spreading everywhere. The traditional cure of 2 weeks of doxycycline antibiotics just doesn't hack it unless you catch the infection and begin treatment almost immediately after it begins, but many of us don't -- I never saw a tick on myself and never had the legendary 'bullseye' rash, but I sure had Lyme and a co-infection. Maybe half of the 'Lyme' ticks also carry other, equally nasty infections ('co-infections') that need different diagnosis and treatment from Lyme.
The docs you have seen -- and I am sure they are good ones -- are following the diagnostic and treatment standards of the Infectious Disease Society of America (IDSA), which is the main voluntary group of docs who treat ... infectious diseases. Their standards haven't been updated for a while, but Mother Nature and her Lyme ticks have been busy filling the continent with their own evil ways, and it leaves the IDSA docs in the dust.
Fortunately, there is another view of Lyme, held by among others the International Lyme and Associated Diseases Society (ILADS). They have a website with information for both docs and patients, and you might want to take a look, including at Dr. Burrascano's treatment guidelines. ILADS is a voluntary group for docs who understand that Lyme is serious and complex and takes time and effort to diagnose and treat properly, and having an MD who is an ILADS member is usually a good sign (tho every profession has its flakes.).
ILADS docs are held in some contempt by the Infectious Disease docs, so patients often are not properly diagnosed if they are not seeing an ILADS doc. I saw 20 MDs before one finally tested me for Lyme (because I had been tested for everything else under the sun), and when the test came back positive for Lyme, the doc gently said, "Oh, you couldn't possibly have Lyme." -- and never mind the test!
I took the test results and went straight to a Lyme doc, who confirmed Lyme and babesiosis. About half of all those with Lyme also have one or more co-infections, which confuses the clueless docs even more because each extra infections brings its own set of symptoms. Mix all that together, and no wonder the docs are confused.
Fortunately, there are other, wiser docs who do understand Lyme, and that is where I would go if I were you. Many of them are ILADS members, so that's a good sign, but keep in the back of your mind that membership in ILADS is no guarantee that you have a really good doc, and if you get one that doesn't make sense to you, see another one. Always get copies of ALL your test results, so that you are totally portable if it comes to finding a new doc at some point.
So, yes, your symptoms sound like what a lot of us have had before getting a diagnosis of Lyme and/or co-infections carried by the same ticks: babesia, bartonella, and a few others.
In your situation, I would find an ILADS member doc for a consultation without delay. The sooner you start, the sooner you are well.
I just searched on google for
-- florida lyme disease --
and got some promising leads to groups that would have the scoop on Lyme docs near you.
In your situation, I would go to a Lyme doc and get a work up, to see what might be going on. Best wishes, and let us know how you do, okay?
In your situation, I would find a Lyme specialist for a workup just to be sure about having Lyme or not. It doesn't go away by itself.
Except for *having* Lyme, the hardest thing can be finding a doc who *understands* Lyme. There is a split in the medical community about whether Lyme is serious, how common it is, how to diagnose it, and how to treat it. It's a very strange situation, but it can be coped with once you are aware of it.
The docs you have seen are probably good ones, with lots of training and experience in their fields, and their knowledge of Lyme likely comes from the standard views of the medical profession that Lyme is rare, hard to get, and easy to cure.
Unfortunately, that train left the station a long time ago, because Lyme is everywhere and going strong, it's easy to get because the tiny ticks that carry it are spreading everywhere. The traditional cure of 2 weeks of doxycycline antibiotics just doesn't hack it unless you catch the infection and begin treatment almost immediately after it begins, but many of us don't -- I never saw a tick on myself and never had the legendary 'bullseye' rash, but I sure had Lyme and a co-infection. Maybe half of the 'Lyme' ticks also carry other, equally nasty infections ('co-infections') that need different diagnosis and treatment from Lyme.
The docs you have seen -- and I am sure they are good ones -- are following the diagnostic and treatment standards of the Infectious Disease Society of America (IDSA), which is the main voluntary group of docs who treat ... infectious diseases. Their standards haven't been updated for a while, but Mother Nature and her Lyme ticks have been busy filling the continent with their own evil ways, and it leaves the IDSA docs in the dust.
Fortunately, there is another view of Lyme, held by among others the International Lyme and Associated Diseases Society (ILADS). They have a website with information for both docs and patients, and you might want to take a look, including at Dr. Burrascano's treatment guidelines. ILADS is a voluntary group for docs who understand that Lyme is serious and complex and takes time and effort to diagnose and treat properly, and having an MD who is an ILADS member is usually a good sign (tho every profession has its flakes.).
ILADS docs are held in some contempt by the Infectious Disease docs, so patients often are not properly diagnosed if they are not seeing an ILADS doc. I saw 20 MDs before one finally tested me for Lyme (because I had been tested for everything else under the sun), and when the test came back positive for Lyme, the doc gently said, "Oh, you couldn't possibly have Lyme." -- and never mind the test!
I took the test results and went straight to a Lyme doc, who confirmed Lyme and babesiosis. About half of all those with Lyme also have one or more co-infections, which confuses the clueless docs even more because each extra infections brings its own set of symptoms. Mix all that together, and no wonder the docs are confused.
Fortunately, there are other, wiser docs who do understand Lyme, and that is where I would go if I were you. Many of them are ILADS members, so that's a good sign, but keep in the back of your mind that membership in ILADS is no guarantee that you have a really good doc, and if you get one that doesn't make sense to you, see another one. Always get copies of ALL your test results, so that you are totally portable if it comes to finding a new doc at some point.
So, yes, your symptoms sound like what a lot of us have had before getting a diagnosis of Lyme and/or co-infections carried by the same ticks: babesia, bartonella, and a few others.
In your situation, I would find an ILADS member doc for a consultation without delay. The sooner you start, the sooner you are well.
I just searched on google for
-- florida lyme disease --
and got some promising leads to groups that would have the scoop on Lyme docs near you.
In your situation, I would go to a Lyme doc and get a work up, to see what might be going on. Best wishes, and let us know how you do, okay?
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